Modern day parenting can be so isolating.  It's an unfortunate reality many of us are struggling with.  If you have a child or children with neurodiversity, medically complexities, or disabilities, it can feel downright lonely.  But you are NEVER alone in this journey.   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES:  Need to talk to someone? The Center for Family Involvement has family navigators ready to listen! They provide 1:1 emotional and informational support as well as community service and systems navigational support. These are volunteers with lived experience who are trained to meet families where they are.  Call or email our help line and someone will be in touch within 48 hours. If you live outside of Virginia, we can connect you with a sister network in your area. Helpline: 877.567.1122 Email: cfihelpline@vcu.edu   David Egan is an advocate, speaker, author, and extraordinary person who you can learn more about here.   John Franklin "Frank" Stephens is a disability advocate, actor, and athlete who penned this brilliant rebuttlle to Ann Coulter following her referring to President Barack Obama as "the retard" in 2012.   TRANSCRIPT: 01:00:07:17 - 01:00:37:00 Speaker 1 Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down  Syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:37:02 - 01:01:05:13 Speaker 1 This podcast explores the triumphs and the hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we've tackled the tough stuff, too. There's been a whole lot of hard in my life lately, so I'm changing it up. Rather than an interview, it's just going to be me. So without further ado, here I go.   01:01:05:15 - 01:01:32:23 Speaker 1 Parenting can be so isolating if you add disability, neurodiversity, medical complexities into the mix, it's often even more so. And it starts from the very beginning. When I was pregnant with my son. I remember so distinctly how excited my husband and I were when the doctor did the ultrasound and said, Everything's good. You have a perfectly healthy baby.   01:01:33:00 - 01:01:58:05 Speaker 1 And now I find the term perfectly healthy to be kind of triggering because what is healthy? My son is perfect. This was in 2010. So this was before we had all the blood tests that come now. The ultrasound didn't show anything of concern, and we went ahead and decided not to do the amniocentesis because there was a risk of miscarriage.   01:01:58:05 - 01:02:26:22 Speaker 1 And we just thought, okay, well, everything looks okay. There's nothing to worry about. We'll continue on. And I had this really lovely pregnancy and we were living in Malaysia at the time. So we traveled. We went to a friend's wedding in India and a babymoon in Bali and all of these wonderful, fun things. I just have the best memories and honestly, I'm really thankful for that because it was just this really great worry.   01:02:26:22 - 01:02:59:03 Speaker 1 Free pregnancy and all of a sudden at 39 weeks, his movement slowed and virtually stopped. It's interesting to me, though, I have this beautiful, beautiful pregnancy. I was reading all the baby books and all of the things and then poof, everything changed. My son stopped moving. We went into the doctor. We were told to have an emergency C-section.   01:02:59:05 - 01:03:27:01 Speaker 1 And because of all the things I read, it made me question all those things. And so I was thinking that I shouldn't have an emergency C-section. What if the doctor's wrong? What if the doctor just wants to have the weekend off? Because I think it was a Friday. It just set me up for so much more hurt than was necessary.   01:03:27:03 - 01:03:53:02 Speaker 1 This doctor was brilliant. She was able to calmly convince me to have this C-section and not to wait. She calmly stressed that waiting would be bad so that doctors saved my son's life. Had we waited, had I not gone in when he stopped moving and had we waited to try to push, Arlo probably would not be here today.   01:03:53:04 - 01:04:17:03 Speaker 1 When he was born, he was my first child, so I didn't realize until I had my other two children that the silence that we experienced after they got him out was actually eerie and scary. I was allowed to give Arlo a kiss on the head and they took him away and he went to the Nikko and I went to the recovery room.   01:04:17:05 - 01:04:42:21 Speaker 1 When I came to and was up in our room, room. The pediatrician came in and told my husband and I that he suspected that Arlo had Down syndrome. And this came as a total shock to us, just absolutely floored and honestly devastated.   01:04:42:23 - 01:05:10:16 Speaker 2 Which is a terrible feeling to have when you just had your first child. Arlo Having Down syndrome is one of the best things that ever happened to me. He has taught me more about life and myself and this world than I could ever imagine. But the fact is he is the first person I met in this entire world with Down syndrome.   01:05:10:18 - 01:05:49:02 Speaker 2 I was 33 at the time. I mean, that alone just felt lonely to have no understanding of what my child's life would be. And then sitting there while he was basically in a bubble with oxygen, reading about Down syndrome and learning about life expectancy and all of these things that our world considers wrong because we are so scared to say the word disability or celebrate the word disability or understand or accept or embrace it.   01:05:49:04 - 01:05:52:21 Speaker 2 And it's really frustrating to me in retrospect because.   01:05:52:23 - 01:06:39:03 Speaker 1 One in four Americans have a disability that impact their everyday life. Down syndrome is fairly common. We know more about it than a lot of other conditions, but yet we know so little about it. I know now because I've been in this for 14 years and I've been able to really think about things. Part of the reason it felt so devastating and so shocking is because we still segregate our world between people who are disabled and not disabled, especially when it comes to intellectual and developmental disabilities.   01:06:39:03 - 01:06:55:24 Speaker 1 Because anyone who speaks in an untraditional way and communicate differently and looks or behaves in a way that doesn't conform to what we think are societal norms is looked at differently.   01:06:56:01 - 01:07:24:16 Speaker 1 My son has Down syndrome. It's common, but he still gets stared at in stores and it stinks. I think about how this world is and how people look at my son and friends of his and friends of mine who have other disability sees and how my peers, adults my age, older and younger as well. They're in similar positions that I was in when Arlo was born.   01:07:24:18 - 01:07:56:19 Speaker 1 They've probably not had an actual meaningful interaction with anyone who's disabled. I'm certainly not anyone with an intellectual or developmental disability, and I think that's a challenge that we as parents of kids who have disabilities don't talk about enough. Not only are we learning to navigate the world with our child and for our child because we are our child's voice for the foreseeable future.   01:07:56:21 - 01:08:06:12 Speaker 1 And as much as I help my son advocate for himself, even at the age of 13, he doesn't communicate in a traditional way. He doesn't.   01:08:06:15 - 01:08:08:02 Speaker 2 Really.   01:08:08:04 - 01:08:44:16 Speaker 1 Care about a lot of the things that I'm fighting for for him. I don't know if he understands them or not. I am trying to help him find his voice. Until then, I am his voice and there is a lot of learning that we have to do as parents to be able to do that. Disability is such a separate condition that if you're someone who has never been a part of the disability community and you have a child with a disability, you have a tremendous learning curve.   01:08:44:18 - 01:09:02:18 Speaker 1 In addition to being that person's parent and learning how to be a parent. You also have to learn about the medical components that go into caring for your child, the community based living components that go with taking care of your child, which.   01:09:02:20 - 01:09:04:11 Speaker 2 My gosh.   01:09:04:13 - 01:09:58:13 Speaker 1 Are so hard to figure out. And they vary from state to state. There's early intervention, which is fabulous, but it varies from state to state, and you've got to figure that out. And then the schools. I still remember being at the farmer's market with Arlo when he was a wee one and a mother of an adult child with a disability, just coming to me and almost tearfully telling me how hard it was helping her child navigate the schools and said to me how she still feels the bruises from that time in her life because the schools just don't understand or don't have the funds or don't have the want to support students with disabilities.   01:09:58:15 - 01:10:53:24 Speaker 1 It's hard. So we have to learn all this new jargon and learn all of this medical staff and understand the finances of supporting someone for their entire life. And my gosh, the mounds of paperwork that you have to do. I have three kids. The paperwork for Arlo, because of his disability is three times as much as my other two children and then while we're doing all of this work to help our child and advocate for our child and help our child learn to advocate for themselves, we're also having to overcome and understand our own herbalism these things that are ingrained in us that we don't even realize are there because it's this societal weight.   01:10:54:01 - 01:11:16:23 Speaker 1 There's a societal weight that is put on the shoulders of people with disabilities, and it's ridiculous. And we don't call it out enough. And as parents, I'm not even sure we understand how significant this is until our children get older or unless we speak to adults with disabilities.   01:11:17:00 - 01:11:17:20 Speaker 2 Who.   01:11:17:22 - 01:11:51:00 Speaker 1 Can truly speak about their own experiences. If we really stop and think about it, our systems are set up to fix disability, not to accept it. Our mindset as a society, I mean not just in the United States but around the world, is that disability is something that we should overcome instead of accept and live with. We constantly see in the media how overcoming disability is celebrated.   01:11:51:02 - 01:12:18:16 Speaker 1 Oftentimes it's a physical disability that you see someone who maybe is an amputee and then they get prosthetics and they start running and they win races and they're back again. And that's great. But you know what? There are a lot of disabilities that are just here, and it's part of our existence. There are people who use wheelchairs who they don't care that they use a wheelchair.   01:12:18:18 - 01:12:38:22 Speaker 1 It's part of their life. They wouldn't change it. It's just who they are. And the thing that they would rather have change is the accessibility so they can go wherever they want, when they need to. And this mindset, I mean, it starts from the beginning. And as parents, it takes a while to come out of it. And some parents, I'm not sure ever do.   01:12:38:22 - 01:13:08:18 Speaker 1 But even in early intervention, a lot of what is taught is trying to fix a child or get the child to conform to societal norms. I remember how important it was to me that Arlo could communicate clearly, and I remember seeing these amazing people with Down syndrome early on. A friend of mine, David Egan, amazing speaker, right? He wrote a book.   01:13:08:20 - 01:13:39:04 Speaker 1 Brilliant guy. Frank Stevens, also a man with Down syndrome who is brilliant and my gosh, I'll put in the show notes his rebuttal to Ann Colter about the R word just absolutely perfect. And as a parent, you have these hopes and dreams and wishes for your child based on your experience. And so when your child's born, you still have those.   01:13:39:06 - 01:14:07:02 Speaker 1 And early intervention comes in and you look and you see potential and you want your child to reach their full potential. But not all of our kids are going to be Frank Stevens or David Egan or whomever, and not all of them want to be. And I spent so much time and energy and money in addition to early intervention, we did extra speech therapy and it was great.   01:14:07:02 - 01:14:46:10 Speaker 1 And the speech therapist, my gosh, I still love this woman and I need to reach out to her and tell her this because I miss her. But Arlo's 13 now, and you know what? I don't think he'll ever speak clearly. But there's only so much those therapies and interventions can do. There's so much emphasis put on that full potential component that as parents, I feel like it takes a while and you're so busy doing that and you're just thrown into this cycle of helping, helping, helping, fixing, fixing, fixing.   01:14:46:12 - 01:15:10:17 Speaker 1 And you're so busy being a parent and an advocate and a caregiver that you can't see the forest for the trees. And if I could turn back time, I would just do early intervention and I'd cut all the other stuff out and I'd take him to the playground and I let his brother have his naps and not have those be interrupted.   01:15:10:19 - 01:15:39:17 Speaker 1 And I would save all the money we spent on co-pays and take them on a vacation. But I can't do that, and I know that now, so I don't kick myself, but I feel like I should share it so other parents don't feel that need to do, do, do all the time. It's okay to stop and just enjoy your child.   01:15:39:19 - 01:16:18:19 Speaker 1 But no one's there to tell us that because we're trying to do the best for them in our mindset in this country about achievement and progress and growth. And for potential is so great that we're pushing, pushing, pushing. And you have to wonder what for, because life is short and there are some curveballs that come our way and we need to stop and experience some joy to.   01:16:18:21 - 01:16:54:20 Speaker 1 So if there's something we can cut out, we should. And if we as parents are so stressed and so lonely, then we should find our own network of support because a happy parent equals a happy child. I find myself since Arlo was born, always gravitating toward other parents who have children with disabilities because they just get it. We naturally understand how difficult it is.   01:16:54:22 - 01:17:02:16 Speaker 1 I can look at some of my friends and I see their face and I see their eyes and I see how tired they are.   01:17:02:18 - 01:17:21:16 Speaker 2 And I understand it because with significant disabilities, literally every day you're going up against something. It could be something as seemingly innocuous as there are no accessible spaces.   01:17:21:18 - 01:17:30:09 Speaker 1 So how am I going to get my child with a wheelchair to such and such place? Or there's bikes in the sidewalk.   01:17:30:11 - 01:17:54:19 Speaker 2 Or there's a school dance and my child doesn't even want to go because he doesn't feel a part of the school. It causes more anxiety to try to go to fun social things that you're supposed to really look forward to because people don't understand or accept or celebrate disability.   01:17:54:20 - 01:18:33:14 Speaker 1 I remember early on when Arlo was 81, family elders had all sorts of advice and one of them said something that if I could turn back time I have so many rebuttals for. But back then I just was so shellshocked. I just kind of took everything in and thought they actually maybe knew what they were talking about. They told me how hard parenting is and how there's always disappointment and expectations that are sort of shattered.   01:18:33:16 - 01:18:44:05 Speaker 1 And I just got that up front all at once at the beginning instead of throughout. And what a.   01:18:44:05 - 01:18:47:01 Speaker 2 Load of.   01:18:47:03 - 01:18:56:11 Speaker 1 So many expletives. Okay. Like that is the most ridiculous thing I've ever heard because.   01:18:56:13 - 01:18:58:14 Speaker 2 One.   01:18:58:16 - 01:19:45:00 Speaker 1 There's no disappointment. I like the disappointment I feel has everything to do with the world that is inaccessible and nothing to do with my son, who is absolutely amazing. And I still have wishes and hopes and dreams for him. They're different, but they're there. Yeah, there are letdowns, and it's not for my son's lack of trying. It's often because of the obstacles set up from an in accessible world, from a world that doesn't accept people with disabilities.   01:19:45:02 - 01:20:18:06 Speaker 1 And as parents, we see this every day. And I think sometimes I see my peers with disabilities handle this so much better because they're just used to it. Whereas I get angry and upset because that's my child. It's just it's interesting. And those are conversations I feel like we need to have. But you know that mama bear feeling you have when you have a child who is just marginalized because of their chromosome.   01:20:18:06 - 01:20:19:08 Speaker 2 Ends or.   01:20:19:08 - 01:20:57:13 Speaker 1 Marginalized because of something that happened during birth or marginalized because of being neurodiverse or whatever. It's hard and it's relentless and it's exhausting. And the supports that we have are so hard to access between lack of funding and lack of staff and shortages and all of the things. So when I say you're not alone and I'm just talking into a microphone here, I.   01:20:57:13 - 01:20:58:14 Speaker 2 Just hope.   01:20:58:14 - 01:21:11:23 Speaker 1 That other parents, other caregivers out there hear this and know that we're here doing this together, doing this hard work, but we're not.   01:21:11:23 - 01:21:14:01 Speaker 2 Alone.   01:21:14:03 - 01:21:19:06 Speaker 1 We're all in our little bubbles, I guess.   01:21:19:08 - 01:21:23:08 Speaker 2 But we're not alone.   01:21:23:10 - 01:21:52:17 Speaker 1 Whenever I drive in my car to and from my son's appointments, because we have to go so far to see so many of these specialists. And it's always been a lot. Because even if you're not far from a specialist and you live in a bigger city, you're dealing with rush hour traffic. I mean, it's a lot of time taken to go to see doctors and therapists and whomever.   01:21:52:19 - 01:21:58:23 Speaker 1 And when I'm driving to and from these places, I think how many other parents are doing.   01:21:58:23 - 01:22:00:01 Speaker 2 This.   01:22:00:03 - 01:22:10:15 Speaker 1 With their children and probably just so tired and so tapped out.   01:22:10:17 - 01:22:51:04 Speaker 2 And feeling so alone. And I'm crying because that loneliness is more than just being in the car alone. I mean, you have your child there, so it's not really alone. I love my son. It's like I love hanging out with him. I wish that we weren't driving to a doctor. I wish that we were driving somewhere fun or all that time and money and energy was spent on a fun vacation or going to the movies.   01:22:51:06 - 01:23:09:09 Speaker 2 But that's the thing. We're not alone. We're not the only parents out there giving all we got just to, like, keep that ball moving right? And there are other parents who can't find a night nurse. It's unfortunate, but we're not alone. We're in this together.   01:23:09:11 - 01:23:13:06 Speaker 1 And I hope that through talking about this.   01:23:13:06 - 01:23:24:00 Speaker 2 On a podcast and if I'm ever not driving all the time writing about it, that we can connect people. I mean, that's part of what my work is, is connecting.   01:23:24:00 - 01:23:52:00 Speaker 1 Families so they don't feel alone. This isolation and this loneliness, we feel it's so complex and there's so many nuance as to it. There are things that are hard to even talk about, like the fact that a lot of us face potentially outliving our child and that weird thing where.   01:23:52:02 - 01:23:55:10 Speaker 2 You don't want this child to be.   01:23:55:10 - 01:23:56:20 Speaker 1 Alone in the world without.   01:23:56:20 - 01:23:57:24 Speaker 2 You because.   01:23:57:24 - 01:24:03:04 Speaker 1 You know how brutal it is when you have a disability.   01:24:03:06 - 01:24:06:08 Speaker 2 And so you're willing to sacrifice.   01:24:06:10 - 01:24:07:11 Speaker 1 Enduring.   01:24:07:11 - 01:24:17:14 Speaker 2 The pain of having to say goodbye to your child. So they're never alone. And if we have other children.   01:24:17:16 - 01:24:19:00 Speaker 1 We're making sure that we.   01:24:19:00 - 01:24:23:03 Speaker 2 Set them up so.   01:24:23:05 - 01:24:34:02 Speaker 1 They are not the person who's responsible for their sibling if something happens to you. But at the same time.   01:24:34:04 - 01:24:34:19 Speaker 2 You hope.   01:24:34:19 - 01:24:43:10 Speaker 1 That they'll want to be there, but then you hope that they don't have to be there. It's these weird mixes of emotion.   01:24:43:10 - 01:24:44:06 Speaker 2 That.   01:24:44:08 - 01:24:57:06 Speaker 1 You can't explain. And so when I see my friends who are in similar situations, I swear there's just this look in our eyes.   01:24:57:08 - 01:25:05:13 Speaker 2 I can see into their soul and understand.   01:25:05:15 - 01:25:24:15 Speaker 1 When I see other parents who have kids with disabilities, I just feel connected to them because there is this heaviness that we carry that you cannot understand unless you're in it as well. It's this extreme.   01:25:24:15 - 01:25:28:17 Speaker 2 Joy and pride that we have.   01:25:28:19 - 01:25:41:11 Speaker 1 For our children, but it's also this burden not of our children.   01:25:41:13 - 01:25:41:22 Speaker 2 But of.   01:25:42:01 - 01:25:47:11 Speaker 1 All the other stuff that is just not.   01:25:47:13 - 01:25:48:09 Speaker 2 Inclusive.   01:25:48:09 - 01:25:48:15 Speaker 1 Or.   01:25:48:15 - 01:25:50:14 Speaker 2 Equitable.   01:25:50:16 - 01:25:58:00 Speaker 1 Or any of the things it needs to be or that it intends to be.   01:25:58:02 - 01:26:59:14 Speaker 1 There are all these systems set up to support our kids, but the implementation of them isn't there yet, not in community based living, not in our schools. And when you try to just do something like everybody else, sometimes it feels impossible and it shouldn't. And these hurdles exist practically everywhere we turn. And so not only are we tired and exhausted from the day to day caregiving aspect of this, which is completely different from parenting, but we're exhausted from just the lack of accessibility, even when things are quote unquote accessible.   01:26:59:16 - 01:27:17:07 Speaker 1 Because unless there's a change in our thinking as a society or our behaviors or our mindsets, it it's going to remain inaccessible. I mean, I know parents.   01:27:17:07 - 01:27:19:14 Speaker 2 That have not had a proper night's.   01:27:19:14 - 01:27:25:18 Speaker 1 Sleep in years.   01:27:25:20 - 01:28:01:24 Speaker 1 This is some heavy stuff that I'm laying out here, and I get that. But I'm doing this for a reason. It's not that there is not joy. I love my son. I love my children. I love my life. But sometimes sugarcoating it does a disservice to what is really happening. And I cannot say enough that it is never about him.   01:28:02:01 - 01:28:20:23 Speaker 1 My sadness, my frustration and my anger. It's never about my son. It's never about anything but what we're up against because.   01:28:20:23 - 01:28:21:12 Speaker 2 People.   01:28:21:12 - 01:28:58:24 Speaker 1 Don't understand. And that's why I want to be real right now, especially in this age of social media and smiling pictures and reels that are all laughing and funny and hilarious. There is a heaviness there in a lot of our lives, and I want people to know that they're not alone in that heaviness that despite the pictures they see, I would bet that so many other people are feeling it, too.   01:28:59:01 - 01:29:40:12 Speaker 1 And I hope that we can start talking about it more and being open about it. There's always this effort to switch and make things positive and share the good as well, and that's really important. And that's why I cannot stress enough how amazing and beautiful parenting is. But as caregivers for people who truly do have to do caregiving in addition to parenting or grandparenting or whatever aspect of this you're in, caregiving is hard.   01:29:40:14 - 01:30:01:21 Speaker 1 We're taught to sandwich things with sort of good, tough stuff. Good and I don't want to do that today. I don't want to twist this and make some funny story or tell anyone it's all going to be okay because you know what?   01:30:01:23 - 01:30:18:12 Speaker 2 Sometimes it's not okay. Sometimes things don't work out. But that's why hope and perseverance are so important, because that combination can.   01:30:18:12 - 01:30:38:08 Speaker 1 Get us through the day, the week, the years. And I hope that by being open about how hard things are and letting people know that despite how things might seem on the exterior, a lot of us are.   01:30:38:08 - 01:30:40:11 Speaker 2 Struggling and that.   01:30:40:11 - 01:31:32:08 Speaker 1 This journey is hard and that even people who seem to understand it and know it and navigate it well, that doesn't mean that they have all the answers or that they're okay just means they're getting through the day. So if that's where you're at right now, know that there are other people struggling right along with you. And for all of us, just kindness, patience, understanding, offering a smile or help instead of passing judgment can make these hard days a little easier.   01:31:32:10 - 01:31:53:21 Speaker 1 Thanks for listening. Please rate review, share and subscribe and let me know what you want to learn more about. There's no shortage of issues to cover, but I'll gladly move a hot topic to the top of the list. This is The Odyssey. Parenting. Caregiving, Disability. I'm Erin Croyle. We'll talk soon.    

You are what you eat. That adage has been around forever for a reason.  The foods we consume have changed drastically over the last few decades. Packaged, highly processed foods have flooded groceries, gas stations, schools, sporting events, and gatherings. It's practically impossible for a child or adult to go a day without having ultra-processed fare offered or simply sitting out to grab.  We're still learning the full impact this has on our minds and bodies. So far the data and anecdotal evidence show it's not good. And to be clear, this has nothing to do with weight or appearance. We're talking overall health, growth, behavior, and how we feel.  Shunta Summers sees this every day. She is the owner and president of Foundations Learning Academy. She's dedicated her life's work to childhood education and nutrition because she understands how it impacts the lives and futures of young people. The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    TRANSCRIPT: 01:00:07:20 - 01:00:36:07 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores the turn our lives take when a loved one has a disability. I join the club, so to speak, in 2010, when my first child was born with Down's Syndrome. I left my career as a television journalist to immerse myself in parenting and understanding all things disability.   01:00:36:09 - 01:01:03:01 Erin Croyle This eventually led to my work at the Center for Family Involvement at VCU's Partnership for People with Disabilities as a communications specialist. The impact our diets have on our brains and bodies has always interested me. Becoming a parent of three very different children and learning what families and schools are dealing with when it comes to nutrition made me realize how complicated feeding children can be.   01:01:03:03 - 01:01:21:01 Erin Croyle Shunta Summers is going to break this down with me today. She's the owner and president of Foundations Learning Academy in Richmond, Virginia. Her child care center has a focus on early childhood education and nutrition.   01:01:21:03 - 01:01:44:22 Erin Croyle Shunta, thank you so much for joining me. You have such an interesting background. Born in Queens, graduate from high school in Chesterfield, majored in food science at North Carolina State University. You own and run a successful business. You do volunteer and advocacy work. You're a mother of four. I don't know how you do it all. Maybe we should start with a what I eat in a day quiz.   01:01:44:22 - 01:01:49:00 Erin Croyle Right to figure it out. Seriously, though, how do you do it all?   01:01:49:02 - 01:02:16:08 Shunta Summers Well, thank you so much, Erin, for having me today. I like all of you. We're in this together. We're growing and learning as we live. One of the things that I do is I try to plan as much as possible, but life happens, throws us curveballs. We can't always do what we planned to do in the day. So that's one of the reasons why one of the key things is prepping.   01:02:16:10 - 01:02:37:16 Shunta Summers I'm a big advocate for prepping at the center as well as at my home, because a lot of times I have to spend more time at the center. There are times that I don't get to provide the home cooked meals that I want to at home. So my alternative is to have meals prepped for my children so that they can grab and go.   01:02:37:17 - 01:03:00:15 Shunta Summers It makes a lot easier that they're getting older, but I still want to make sure that they're given the best choices as possible, knowing that there's so many alternatives at their fingertips that they could just order food to come to their homes whenever. So I do understand the importance of having food too readily available at home as well as at the center.   01:03:00:15 - 01:03:05:05 Shunta Summers And that's one of the things we try to educate our families about as well.   01:03:05:07 - 01:03:23:03 Erin Croyle And we're going to get into what you suggested prep later on. I'm writing it down on my notes to make sure we follow up with that question. But I want to give you a little bit more background to who you are. I'm really interested in what got you interested in food science and the connection to early childhood.   01:03:23:05 - 01:03:47:15 Shunta Summers One of the things was I was actually pre-med in school and then I did well, biochemistry, organic chemistry, loved it. But then once I had to start getting into working with humans and blood, I just didn't enjoy it. But then I also was fascinated me was how much food really does affect our bodies on a daily basis. So that's one of the reasons why I went into food science.   01:03:47:17 - 01:04:25:15 Shunta Summers And I absolutely loved it because what I learned at school, a lot of times people say, what you learn school you don't really use in the real world. But those basic concepts that I learned early on still provides the framework for what I do now, even with early childhood development, because I take it our holistic approach. We don't just look at the educational needs, we look at social, emotional, plus the nutritional needs of these children, because we're actually helping families too, because a lot of our families, they don't know how to properly feed their children.   01:04:25:15 - 01:04:53:17 Shunta Summers There's a lot of processed food, so introducing the child as early as possible to healthy, nutritious meals, you can really help their tastebuds very early on so that they don't want and need and crave the highly processed, salty, sugary, sweet foods that don't have high nutritional value that's going to last and help them grow and develop either.   01:04:53:19 - 01:05:25:05 Erin Croyle I am so glad that you brought that up because something that so many parents struggle with is how hard it is to feed our kiddos. Right? And by right I don't mean right versus wrong or good food versus bad food. This conversation is not going to be about more diet culture nonsense. It's about nourishment. And in my experience as a parent, as someone who is involved in schools and someone who's at sporting events, when I say it's hard to feed our children, right, I mean that they are inundated with heavily in ultra processed foods.   01:05:25:11 - 01:05:45:10 Erin Croyle Everywhere they go. There is these things called Scooby Snacks that are like on the label. They say they're good for kids and multigrain. But if you look at the actual packaging, I mean, it's all refined ingredients. Yes. Sugar. So much of the convenient stuff for toddlers and children and adults, for that matter. It's engineered for all of us to want more, right?   01:05:45:11 - 01:05:55:15 Erin Croyle Yes. And then you couple that with food aversions and all these other things, it's really hard to establish and maintain a palate for foods. So tell me more about your experience with this.   01:05:55:17 - 01:06:25:23 Shunta Summers So it is very challenging just from even the childcare perspective is because you want to do especially post-COVID, you want to have as many individually wrapped items as possible, but then that also means highly processed foods that are the lower nutritional value. So just last week I was at a food show. They know that we're vegetarian, So one of the things that they had was Kellogg's.   01:06:26:00 - 01:07:01:00 Shunta Summers They came in, we went to to them and I saw the stuff. But then I also know there's another smaller company that has a whole grain that uses oats versus the refined and the enriched flour. Those type of things where you have to be aware of. Yes, the packaging is not as pretty, but at the end of the day, when I can serve crisp rice over wheat cracker, that goes a lot longer, especially when I have so many children with allergies.   01:07:01:02 - 01:07:25:09 Shunta Summers So that's one of the things is just looking at it like with meal prepping, just like as far as our yogurt, we would just get the tubs of the nonfat yogurt and we would make our own parfaits. But that's a part of prepping. And then at home, that's what I would do too. So we would have the oats or a granola and then we'd have the yogurt and then we'd have the fresh fruit.   01:07:25:11 - 01:07:52:18 Shunta Summers So that's one of the things that we do with the children. We give them the exercise of putting their parfaits together. But on the go, you would have that ready to go. It is very challenging because it takes more time to cut up fruits and vegetables. It takes more time to look at all of the ingredients that goes into a product versus just looking at the big names that's on the front of the product.   01:07:52:21 - 01:07:55:11 Shunta Summers It is very, very challenging.   01:07:55:13 - 01:08:16:09 Erin Croyle Let's talk more about those challenges. Like you mentioned with yogurt. I know I ran into this when my kids were younger, where I would try to give them all that plain yogurt and then just put some fruit in it and maybe a little honey. And then they went out and were introduced to all the other stuff, and they don't like that anymore.   01:08:16:11 - 01:08:28:01 Erin Croyle So what are some ways that we can prep and help keep our our children's palates kind of geared towards less processed stuff?   01:08:28:03 - 01:08:54:01 Shunta Summers It's either be honest with you, it's so much easier birth to five and then once they get into school, you can't help. They're introduced with so many different things, like you said, with the yogurt, because the schools are going to do the prepackaged yogurts. And even when you pack your child's lunch, after a while, they're going to want some of the things that they see other kids have and they'll, Why do you have this?   01:08:54:01 - 01:09:26:01 Shunta Summers Why do you have that? So it's more so of just honestly educating them early on with the nutritional value of the the foods that they're putting in their body, what it what it does like with my pre-teens, I have a daughter she goes she likes going to altar. But one of the things I say is instead of having to do all the acne and all of those things, if you put good things in, you don't have to worry about all of these bad things coming out.   01:09:26:03 - 01:09:50:18 Shunta Summers So one of the things that I like, if you do drink a juice, make sure you followed up with that same amount of water. Little things you just instill in them. Yes. They may not always get it initially, but in the back of their mind they'll they'll go back to it. I had a parent tell me that she did all the right things and then their teenager exposed to very various different things.   01:09:50:18 - 01:10:13:08 Shunta Summers And then, you know, they followed what everyone else did. And then later on, 1819, that's when they realized, hey, what mom was was doing actually made me feel better. And it was a lot easier to do. So all we can do is we can educate, train them, show them the good, the bad and the ugly. But be realistic about it.   01:10:13:08 - 01:10:33:21 Shunta Summers Not just saying that, don't do this. We explain what what goes into them depending on their age so that they really do understand and so they can make that decision for themselves. I think that that makes it a lot better for them. And if they have more buy in, like I have a teenage son in high school.   01:10:34:01 - 01:10:58:21 Shunta Summers So he was like, Well, I want to make sure my chicken breasts. So I said, Well, here is the non salt seasoning. So he was like, okay. And then I can add something else. Yes. So you're not adding salted seasoning plus any condiments or anything that has that. So you compromise. And so as long as they can understand that, of course you can explain that to our five or seven year old.   01:10:58:23 - 01:11:08:17 Shunta Summers But the older the child is, you you try to prepare them for life. And so you you do it in phases and stages as they're developmentally ready.   01:11:08:19 - 01:11:28:12 Erin Croyle I really love that you mentioned that. And I'm going to share my own story because I have three kids and my oldest, as I mentioned, has Down syndrome. Early on, he needed to gain weight. We're like working with the doctors to make sure he got all the food he needed. It was my first kid, so I had time.   01:11:28:12 - 01:11:49:23 Erin Croyle It was extra egg yolks in the scrambled eggs, heavy whipping cream in the scrambled eggs. I would always add baby spinach to those eggs because you can't taste it. You may see green flecks. It's nothing. A little turmeric in there, extra olive oil here and there, avocados. But it was so interesting to me because my mother in law, for instance, was like, well, he has to gain weight.   01:11:49:23 - 01:12:19:22 Erin Croyle Why aren't you giving him ice cream? And I'm like, because he's like, not even one yet. And I don't want him to want cake and cookie and ice cream. I want him to want the things that are good for his body, that are good for his brain. And I so often see that with kids. So especially when you're thinking intellectual disabilities, developmental disabilities, if you can help them, just give them all the good stuff early and I really kept the processed stuff out of his food.   01:12:19:22 - 01:12:42:16 Erin Croyle Aversions came his favorite foods. Because of everything, I pushed our hummus and the only produce he'll eat is clementines. But I'll take it and I can make smoothies and mix in a bunch of vegetables. Right? I was able to build a really good foundation, and now I'm trying to introduce more foods back in, and I can get into that later with ideas for others who are struggling with that.   01:12:42:18 - 01:13:01:06 Erin Croyle But I just feel like it's so important. But yet we see everyone around us trying to push the and again, I don't want to do diet culture, but some of it is just junk food in it and he didn't like lollipops and candies. He only liked chocolate. And so I was riding that wave as long as I could.   01:13:01:06 - 01:13:07:21 Erin Croyle And it was interesting to me to see how many people tried to push like, you know, the gummy fruits.   01:13:07:23 - 01:13:09:21 Shunta Summers gosh, yes. But why do.   01:13:09:21 - 01:13:11:20 Erin Croyle People give kids gummy fruits?   01:13:11:22 - 01:13:40:22 Shunta Summers I have no idea. No idea. I see. And that's one of the things like something like the gummies. My daughter has severe food allergies, so I had to dig into what makes those gummies. Even the gummy vitamins that they push, it has carnauba wax in it and that is a derivative of a tree nut. So that's one of the reasons why I don't do the gummies.   01:13:40:24 - 01:14:02:13 Shunta Summers When she was younger and I had more control, that was easier for me. But now that she's older, I want her to understand what that does to her. So when she starts breaking out, when she does not feel so good, it's because of that. So she's making that choice. Even though I see everyone eating those, I don't want to because of the way it makes me feel.   01:14:02:15 - 01:14:27:06 Shunta Summers So even with children that as they get older, they start having the food aversions, the core and the foundation that you laid. It is inherently in them and eventually it'll come out. But the one thing is to give them that time and space to try new things. But yes, Clementine's I'm all for it, you know, let's go with that.   01:14:27:06 - 01:14:56:10 Shunta Summers And like you said, the smoothies, you're doing that. But it is very, very hard nowadays when even I mean, love it grandparents or other family members that don't share your same philosophy when they come in and they're like, I want to give them a treat. Okay, let's bake together, not let's take them out for ice cream and all these other things that just is not good for them.   01:14:56:12 - 01:15:21:22 Shunta Summers That's one of the things that I tried to do, even in my own family, is just educate them on the importance of eating more wholesome foods because you you actually feel better and it stays on you a lot longer than those highly processed food where you had those sugar spikes and then you had those crashes and you just do not feel well at all.   01:15:21:24 - 01:15:46:09 Erin Croyle You see so many different kids and you have been doing this for over 20 years with your foundations Learning Academy, seeing different generations. I find it interesting how little we know about nutrition. I see it with my husband who thinks certain things are healthy and I'm like, no, no, no. They need some protein for breakfast or else they're going to be hungry in an hour sort of thing, right?   01:15:46:11 - 01:16:00:10 Erin Croyle How do we help with the mindset of parents and family members to understand and children? What we put in our bodies really impacts how we feel throughout the day.   01:16:00:12 - 01:16:26:14 Shunta Summers That is that the challenge that I have right now. Just last week we had a child just he comes in at 630 in the morning and he is very amped up, not even in kindergarten. And mom brings him in bags of chips. But I was like, Hey, what did you drink this morning? I had some soda and he had candy on the way there just to get him in there.   01:16:26:14 - 01:16:48:17 Shunta Summers But mind you, the child had been coming here for years, and I could tell that he just could not sit still. He couldn't do this at any other. And I had to call mom. I said, Mom, I know I maybe crossed a line, but can you help us out? We give him wholesome breakfast. Just please, if you can refrain from doing that.   01:16:48:17 - 01:17:17:20 Shunta Summers So that be the first thing that's on his stomach in the morning that can help us and also help him once he goes to school throughout the day because he has numerous behavior issues. But it's because he is like amped up on sugar constantly. That's where it's very challenging. I try to do workshops. Not as many parents participate, but I want to get back into doing our little daily tidbit of information that we send to parents.   01:17:17:22 - 01:17:41:11 Shunta Summers Some small thing that they can read not throw in statistics and everything at home. Just say, Hey, let's start the morning out with this. Let's try this, let's try that. Parents are a lot of times they're in a lot. There's rushing and it's just a lot, especially with the social emotional aspect that families are dealing with post COVID that goes hand in hand with nutrition.   01:17:41:13 - 01:18:14:13 Shunta Summers So many people have had to move. Family life has changed on a permanent basis. Sometimes you have families that have had to move in with grandparents and everything. So that dynamic changes to when you tell a parent, hey, meal prep, they may not have the space or the capacity to do it. So you try to take baby steps now when you're trying to food, one of the things we try to do is we'll take pictures of the child so we can share that with the parent so that they have more buy in because they see it's their child that's eating that food.   01:18:14:19 - 01:18:29:19 Shunta Summers And then we'll send home a recipe so that they could possibly try it as well. It is just very challenging. I will say as soon as you think you have it figured out, that's when the child goes and changes and you're like, my gosh.   01:18:29:21 - 01:18:31:08 Erin Croyle Every time, right?   01:18:31:08 - 01:18:33:11 Shunta Summers Yes, yes, yes.   01:18:33:13 - 01:19:03:07 Erin Croyle Yeah. I feel like we're at a really tough point in so many ways. This intersection of post COVID or living with COVID after being isolated, but then also the economy is booming, but people are hurting. We've got inflation. Grocery prices are more expensive than ever. Families are working so hard, kids are exposed to so much lousy food. And on top of that, I love the anti diet movement.   01:19:03:07 - 01:19:19:23 Erin Croyle I love that we're finally fighting against diet culture. But at the same time, I was working with a nutritionist for a while for my own sort of disordered eating, growing up in coming of age in the nineties that focus on being rail thin really does a number on you, right?   01:19:19:24 - 01:19:20:17 Shunta Summers Right.   01:19:20:19 - 01:19:48:00 Erin Croyle So there's a generation of parents trying to undo what was done to them as kids and a lot of that and the nutritionist advice to me was to give my kids access to whatever. And I don't think those nutritionists have kids. When you think about the recommended level of sugar and then what they get just in a school day or anywhere, I am terrified to even do the math of sugar amounts that our kids are exposed to.   01:19:48:02 - 01:20:19:22 Shunta Summers That's right. That's right. That's one of the challenges. I know my daughter, she is very in tune with watching nutrition and she was just like, yeah, things change when Michelle Obama had that initiative in the push for healthier lunches because all of our good juices and all our good stuff is gone now. But it was very good so that they do have better choices in the schools for the children, but it's still not where it could be.   01:20:19:22 - 01:20:52:21 Shunta Summers But I understand that it's high is really tough because of the cost of the foods. I know that the cost of food, it is really, really high. Right. It is very challenging for the prepared foods that the children have available to them in the school system as well as in a lot of childcare centers here. And then just imagine where a parent where you have to grab something and go just because you're constantly doing, doing, doing.   01:20:52:21 - 01:21:20:13 Shunta Summers Like you said, I live it, you know, with the children, they have access to DoorDash, Uber eats all of that. So no matter what I prepare, sometimes they'll order stuff before I get home and I'm like, Guys, I had it already prepared for you. With all the food allergies. That's one of the problems that I have, is that you don't know all the byproducts, everything that goes into making of your food.   01:21:20:13 - 01:21:43:12 Shunta Summers So you have to be very, very careful sometimes when they're there just feeling sluggish. And I said, You didn't put anything good in so you were eating nothing. But fillers is going to come out later on. So that's why you're not feeling so good. So from time to time we'd have to do like almost like a detox. I wouldn't call it that to them with my children.   01:21:43:14 - 01:22:10:03 Shunta Summers That's where it really is challenging. I haven't seen so many children with so many issues with bowel movements and everything, and that's because of the food that they're getting in. They're not getting enough fiber, they're not getting enough of their nutrients and everything in on a daily basis. And parents like old, they don't eat vegetables. Okay. What what what can we do to try that to start that?   01:22:10:03 - 01:22:19:21 Shunta Summers Don't just give them the option of only having the fruit. You have to find something or creative way of preparing it so that it's it's fun for them.   01:22:19:23 - 01:22:23:04 Erin Croyle And how do you do that at your academy? You have ages.   01:22:23:04 - 01:22:46:24 Shunta Summers What Actually, my passion is always with infants. This is the first year that we don't have an And so I start like at 14 months and we technically go up to 12 years old, but we stop at second grade. Those are the ages that we primarily serve. And my focus is really preschool, toddlers and preschool. So one and a half to five years old, those are a majority of our children.   01:22:47:01 - 01:23:00:04 Erin Croyle And you have this amazing program or you're feeding them healthy vegetarian foods. What ways is that food prepared to get them excited about it and trying new things and all of the above.   01:23:00:06 - 01:23:26:16 Shunta Summers We have our food activities that the children participate in. So when we would show them almost like the gummy candies, we would dry it fruit. I had the child friendly knives and all the little things like that. So that was an activity. They would cut up their strawberries, they would cut out the bananas and then we would dry it because they did it.   01:23:26:18 - 01:23:46:11 Shunta Summers They were more apt to try it. And then when they took it home, that was the thing that they talked to their. I made this and try this mommy. And so that had more buy in. One of the things that we're working with, too is Virginia State, their ag department. So we're going to do almost like a smaller urban garden.   01:23:46:16 - 01:24:08:23 Shunta Summers So the children are growing it because that's what we've seen, is they have buy in, they're doing it. They're touching, feeling and smelling it. They're more likely to taste it. That's one of the things that we we're very excited to do. So we have the raised bed gardens and all of that that's going to be popping up for this spring at my mother's center.   01:24:08:23 - 01:24:32:24 Shunta Summers They do that too. So getting children to try tomatoes, gosh, that was like unheard of. But because they saw the evolution of the tomato growing, how they dug the seed in there and they saw it, the vines growing, and then they finally saw this little tomato that grew, allowing them to pick it, that had more body. And so they can at least try to say, hey, I like it, or I don't like it.   01:24:32:24 - 01:24:47:00 Shunta Summers Not just because sometimes the parents would say, Well, either I didn't like it, so I'm not I didn't serve it to my children. That was a way of introducing new foods to the children so that they would be excited about it.   01:24:47:02 - 01:25:05:23 Erin Croyle I love that. I am actually lucky. My 11 year old has always have a picture of me at the farmer's market when he's like nine months old and eating tomatoes with this big smile and his cheeks full. Yes, right. The growing him is so fun. You could grow a tomato plant on your dad. You don't have to have a garden right?   01:25:06:00 - 01:25:24:17 Shunta Summers One of the projects we would do is, okay, you have a balcony because you live in apartment. Okay, put that out there. Or let's say you don't even have a balcony. We can put it on the windowsill and let's see it grow. The children really love that. And so that take home was that it got them talking about it, got the parents involved with it.   01:25:24:17 - 01:25:45:01 Shunta Summers That made it exciting that some of the extra vegetables and a couple of tomatoes we would put out for the parents and they were like, I don't either. I said, Well, your child tried it. And then of course, when the child is ready to go, Mom, can we get one? It's still small steps to help the children and the fence as well.   01:25:45:03 - 01:25:53:05 Erin Croyle Yeah. The thing is, it's you have to walk the walk. You can't just talk the talk. And I think as parents, you set the example.   01:25:53:07 - 01:26:13:15 Shunta Summers That's right. And that's one of the things I tell my staff. I said, we're actually teacher parents to the children. That's one of the ways that we would get through to them was that we would introduce new things and then the children could go and explain this to the parent. And then that would encourage at least hopefully it would encourage some talk.   01:26:13:17 - 01:26:30:22 Shunta Summers Even the vegetarian meals. There's a lot of ways to do it, that child friendly, but it's just depending on the ingredients that you do use that makes it more nutritious. And also so they don't feel like they're eating vegetarian food.   01:26:30:24 - 01:26:57:03 Erin Croyle Yeah. So both as a journalist, I've studied nutrition and big food industries and then having a son with Down's Syndrome and ADHD and now a daughter that has ADHD, I've had to really teach myself, and I'm lucky enough to have a nutritionist at the Down Syndrome clinic in Boston who really gets it, because I think some of the families listening might like to see a nutritionist.   01:26:57:03 - 01:27:20:06 Erin Croyle I know people who have, and some of the ideas are like, make a train out of vegetables, great. But that does not work for my kiddo, for kids who really have a hard time like my son. The other day, someone had a birthday party at school. They serve this Black Forest cake and my son loves chocolate, but it had two raspberries on it so he wouldn't touch it because there were raspberries on it.   01:27:20:06 - 01:27:49:00 Erin Croyle Some aversions are really that big. Know what the nutritionist has pushed is that you have a plate of the things that the child will eat that are healthy and the favorites. But then you have just a tiny, tiny bit of that new food. And that tiny bit of new food is something that is also familiar to them. So I've actually tried since my son will only eat clementines, I put a little piece of an actual big orange, a regular orange.   01:27:49:02 - 01:28:10:03 Erin Croyle I haven't really gotten anywhere with him yet, but he won't push the plate away. He just won't eat that piece. It really is a lot of patience and understanding and consistency. Yeah, I think to try to get our kiddos to really expand their palate and their mindset for food. Right? And it is work for parents.   01:28:10:05 - 01:28:38:00 Shunta Summers It's very challenging because when we have younger children that come in that that are undiagnosed, but we can tell there's a lot of times I'm asking, what does your child normally eat? Especially when they don't eat very well at the center and we can't let them go hungry. So we encourage that parents, tell us what your child normally eats and then you see, okay, a lot of French fries, tater tots, those type of things.   01:28:38:00 - 01:29:03:24 Shunta Summers I said, okay, those are highly precious, but it's also textures. So how can we introduce that and how can we incorporate understanding that we may set that plate in front of the child? We may have to have some alternative to back up because he still needs to have some type of nutritional value so that they can go throughout the day, but at least introduce them to something that they can at least see.   01:29:04:01 - 01:29:36:06 Shunta Summers They may not touch it the first few times, but the repetition of it, you're right, it takes a lot of patience because that takes time for us to to be able to do that. And when you're talking about on a larger scale of having those children that have those foods and not only that they haven't been exposed to or introduced to those children that just don't like those textures, some children only want the softer foods or semi hard foods.   01:29:36:09 - 01:29:55:08 Shunta Summers They won't touch anything that's too hard. So how do you compromise? You have to have some type of backup. So that's one of the reasons why it is a passion. But you have to work with the parents as well as you can say, Hey, your child tried this today. Can you try that with us or even give them a small amount?   01:29:55:08 - 01:30:15:14 Shunta Summers This is what we did, because I've had parents ask us before, how do you prepare it? Because I can't get my child to eat this, that or the other. That's one of the things. And then having very thoughtful staff that we're going to have old school journaling so we can see if there's a pattern. So let's say they're not going to a feeding clinic yet.   01:30:15:19 - 01:30:44:17 Shunta Summers We kind of need to see that pattern of what that child likes and what that child doesn't like so we can slowly start to introduce some new foods. So let's say it's a whole wheat roll. If it's hard, the child won't eat it. We have to soften it. You got to maybe sometimes cut it, cut into force. You have to try various different things just so that they could try to eat that new food that you're trying to introduce to them.   01:30:44:17 - 01:31:08:01 Shunta Summers It is very, very challenging. Like with the cauliflower we had a whole what was the week of the cauliflower. So we did various different ways. I didn't let them shredded because I can find the child friendly shredders, but I showed them the shredding process and then some of them said, it looks like rice. I said, Yes, You get them thinking it's a learning experience.   01:31:08:01 - 01:31:31:05 Shunta Summers It really, really is. It's a learning experience. So it does make it a lot harder because when you have a child with disabilities, you tend to want to stay in that safe space because you were like, I got to get this amount of nutrition in them and I know the foods that they'll eat. I've had parents that I had a child that had significant developmental delays and he was at a feeding clinic.   01:31:31:05 - 01:31:54:20 Shunta Summers And then once he got off of the feeding tube and he was starting to telephone, it was a lot of processed foods. My time. He was in elementary school. That's all he asked for. I want my lunchbox. I said, listen, let's try this eventually, if we had him over the summer, that's when we saw the biggest change where he was able to eat our foods.   01:31:54:21 - 01:32:20:14 Shunta Summers It wasn't that he couldn't. He was just so used to having the pizza Lunchables because the mom knew that's one thing I could get in them. He was going to be fed because weight gain was always an issue. I said, Let's try some of the potatoes and we'll add a little root vegetable mixed in there. And a mom's like, I never even thought about that.   01:32:20:14 - 01:32:46:05 Shunta Summers And I said, That will help instead of the lunchable, you know, So trying to educate her as well. I will never, never forget that because a child now, he graduated high school and I see his father and his mom from time to time and so he does remember that we kind of said, we're going to try this because his parents never want him to try anything because that was their only child.   01:32:46:06 - 01:33:06:24 Shunta Summers So they just let him kind of be in the driver's seat. So now that he's in college, he's starting to venture out on some different foods. You know, he's not there yet because he stays at home, but he he just remembers how much we pushed him. We'll try this. I know you like the banana, but he wanted it cut up.   01:33:07:01 - 01:33:29:20 Shunta Summers I said, listen, what about if you hold it, maybe put it on a fork? So it was like, gosh, no, I'm not going to bite it. I said, Just try it. So I do understand even that action of biting it off of the actual whole banana, that was something just mentally he he did not want that. If it was cut up in bite sized pieces where he can grab with his fingers, he was fine.   01:33:29:22 - 01:33:35:08 Shunta Summers So eventually we got him to start to eat the larger pieces. So it's it's very challenging.   01:33:35:14 - 01:33:41:23 Erin Croyle It's complicated. And I think because we all bring our own food issues to the table, so to speak.   01:33:42:00 - 01:33:42:22 Shunta Summers Yes.   01:33:42:24 - 01:34:07:04 Erin Croyle That, you know, we're like either trying to not pass them off or accidentally passing them off. Yeah, yeah. We're talking about it too much and just there's so much pressure on food and there's research that shows that children, because they don't have control of much in their lives, will then create a fight with food because they can say yes or no to what they're putting in their mouth.   01:34:07:06 - 01:34:09:14 Shunta Summers Yes. Yes.   01:34:09:16 - 01:34:16:18 Erin Croyle So how do we take the fight out of food then, to make it just less of a challenge? Do you have any suggestions for that.   01:34:16:20 - 01:34:40:11 Shunta Summers As a parent, knowing your child? And so you're just going to have to do a little bit of research knowing that, okay, just for like that, that child with the bananas, we're not trying to get him to try Kiwi or the sea thing. no, no, no. That was definitely out the water. But let's start small. Let's try a larger piece of the banana.   01:34:40:11 - 01:35:08:02 Shunta Summers Let's try some things that has the same texture as the banana. Don't try to give them like a mango that textures to smooth to watery. They wouldn't want that. Just trying to do different things so your child can still be within their comfort zone. But try it. Try new things. I would never say mix the foods up, especially with food aversions.   01:35:08:04 - 01:35:38:19 Shunta Summers That's not respecting the child's desire to have control. I just I'm a person too. I don't like my food touching, so I try to respect that with the children. So we'll keep everything separate. Now, if they want to dump it in the plate, fine. But at least you're having that control too. So even something as small as how it's presented, it makes a difference sometimes when you're trying to introduce the food, we have the whole food and we're letting them touch it.   01:35:38:21 - 01:36:25:06 Shunta Summers Like, Well, we tried the Kiwi. They were like, my gosh, it feels so weird. But I said, Look at the inside. It is very different. So it's taking into consideration the small things to do to make a difference. Like the lunchable with the, the child that only eight that texture food. What can I mimic that is like that but it's a little bit more nutritious for that child so that they don't have to get a majority of their nutritional value from like a pediasure or and ensure as they get older, which I understand there's there is that need there but like you said, doing the the whole food trying to do have you whipping   01:36:25:06 - 01:36:30:22 Shunta Summers cream into your eggs and things like that, that does go a long way.   01:36:30:24 - 01:36:54:12 Erin Croyle It's important to to remember with texture, you know, even my neurotypical child, he loves blueberries, he loves tomatoes. But if you taste the blueberries, sometimes they're mushy and I don't want to eat them. And sometimes they're perfectly firm but sour. And I'm like, it took me a while to realize I would get frustrated because I would be excited.   01:36:54:12 - 01:37:19:05 Erin Croyle I'm like, All right, I got your tomatoes and your blueberries. And then he wouldn't touch them. It finally has clicked that it's, these are kind of gross. And so what I do as a parent is if we sometimes get a batch of blueberries that he's just not into, I put them in the freezer and those are saved for either making muffins or smoothies or protein pancake, which we're big on in this house and things like that.   01:37:19:05 - 01:37:20:14 Erin Croyle So I'm not wasting food.   01:37:20:20 - 01:37:21:19 Shunta Summers Easier.   01:37:21:21 - 01:37:34:15 Erin Croyle Because it's expensive or tomatoes. You can roast them and, you know, make something out of them. If you invest in a food and you're frustrated, your kid's not going to eat it. Think about how you can freeze it and do something else with it.   01:37:34:17 - 01:37:56:03 Shunta Summers Absolutely. That goes a long way. Like you and like you said, with with the fresh fruits, you can't always tell when they're like you said, they're mushy or they're firm, but they're they're just sour. And you don't want to say, okay, I'm a throw it away. You definitely you can freeze it. There is no one way of doing this, honestly.   01:37:56:03 - 01:38:17:14 Shunta Summers It's just trial and error. But you keep plugging along. If they can verbalize to you what they don't like about it, it is. Sometimes it's hard because they're just like, it's just yucky. Unfortunately, sometimes if they're at a certain age or a development that one time that you try it, that can have that setback that we don't want.   01:38:17:20 - 01:38:39:23 Shunta Summers That's one of the things we just have to take them to consideration. Just say, okay, maybe we'll try that at a later time down the road, a couple of months down the road, but just know that it's not a permanent thing. But you have to know that you can't keep pushing, pushing, pushing because all it's going to do, like you said, that the child has that control when they feel like they have the power to say, no, I don't want it.   01:38:40:00 - 01:38:52:18 Shunta Summers You do have to make sure that they have buy in too, so that they feel empowered. That's the main thing, is letting them feel empowered. But you don't want to cater to the wrong habits, if that makes sense.   01:38:52:20 - 01:39:13:08 Erin Croyle it makes total sense. And it can be very hard, especially when you have outside influences and grandparents and family members who are pitching in and just allowing a free for all with certain things. It's really hard to undo the damage and it really is damage because it really can change your palette and the way that you taste things.   01:39:13:08 - 01:39:29:08 Erin Croyle And yes, I notice myself, if I have been eating ice cream and my God, I love a good brownie, right? And then I go to have blueberries. They don't taste as good. But if I say, okay, guys, you know what? We've been eating so much stuff, let's just kind of do some unprocessed for a week or two.   01:39:29:08 - 01:39:42:12 Erin Croyle And really, those blueberries taste like heaven, like the sweetest I've ever had. You kind of have to give your body and mind a break to have those. Yeah, it's really good.   01:39:42:12 - 01:40:04:19 Shunta Summers Again, that's what I was saying when I when I had to kind of detox when we're just doing all the bad things and I'm starting to see that, that, that they are wanting all of those foods. That's what I said. Okay, let's take that break and just do the process for all just a little while. I say it has to be permanent, but it's important to get back to our basics and what we know.   01:40:04:21 - 01:40:08:12 Shunta Summers Yeah. So yeah, I totally agree with that. And I've done that myself.   01:40:08:12 - 01:40:48:01 Erin Croyle So yeah, one, it's important to remember too that there are foods literally designed and tested to make us want to eat more, to have a specific mouthfeel specific. In fact, I think it's Doritos and like certain chips, right? These food science tests are looking at the mouthfeel. They literally are making sure it's not too spicy, just kind of bland enough to make you want to eat a lot of it as opposed to when you eat a really good rich dessert and you're like, gosh, I'm done, because that's just a really good dessert and you're done.   01:40:48:01 - 01:41:15:22 Erin Croyle But these foods are meant to make you want more and more and more. Yeah, and that's what we're contending with everywhere our kids go. And not only that, but like, our schools don't have a lot of money for food. And these companies literally design food to give to students. So we're talking Kellogg's, General Mills, whoever, very specific cereal bars to get kids to be brand loyal.   01:41:15:24 - 01:41:18:20 Shunta Summers Yes. Want that. That's right.   01:41:18:22 - 01:41:30:14 Erin Croyle How do we contend with that, if that's what they're getting fed? They're literally trying to be programed to want foods. What what are we to do.   01:41:30:16 - 01:42:01:23 Shunta Summers That That's probably the biggest challenge because like even the preschoolers, they know logos, They know brand recognition, even before they can recognize true alphabets and words and everything. They know brand recognition. You ask them McDonald's, Taco Bell, you know, all of these places, they know what those images are, even if they don't know what the words are. And like you said, especially in the schools like you had, there are prepackaged foods that are all wonderful and colorful.   01:42:01:23 - 01:42:23:19 Shunta Summers Like just last week I was at the food show and again, it's nothing wrong with it but to to see all the bright colors, the Kellogg's things that they were trying to push as healthier alternatives. All of this like Trix yogurt and all that stuff like that, when I know that there's other alternatives. And yes, the packaging is not as good.   01:42:23:19 - 01:42:43:16 Shunta Summers And that's one of the reasons why I go to that type of food, because I don't want the children to I don't I don't want to buy into that brand loyalty. And then also that mindset that if it's not that, then it's not as good. That's one of the problems that we have with the younger generation, not just with food.   01:42:43:18 - 01:43:13:11 Shunta Summers It has to be a certain brand name for it to be good. Not saying that the actual quality is there, but because the marketing was so well done that this is why this is so much better for you than anything else that makes a difference. My family and I, we go to Canada every year and one of the things that I had introduced them a couple of years ago was let's go into a Walmart.   01:43:13:13 - 01:43:52:01 Shunta Summers It is so different. We bought home like Froot Loops, same company. I said, Tell me if you can tell me the biggest difference. the the packaging doesn't look as nice as the American. They don't have blue like we do. And I said, okay, so now that they're old, I said, Turn and look at the ingredients. They use beet juice as their food coloring, whereas we use red dye number five yellow and all that carcinogenic.   01:43:52:03 - 01:44:26:22 Shunta Summers Why are we and it's the same company, same American company, why are we allowing that to happen for us Americans? But we send overseas the better quality So they literally their aisle for cereals is nowhere near the size as our cereal aisle is. And so that's one of the things that we notice when we say there everyone feels better, I say it because I know I'm going off on a tangent, but the government regulates sugar and salt amounts in all the foods that are sold in Canada.   01:44:26:24 - 01:45:10:15 Shunta Summers So what happens is you can't get high fructose corn sirup, you can't get some of the things that we have. So at least if you did have the processed food, it was a little bit better for you. That's not available to us. For example, because I follow the Child Adele food program. I'll serve cereal once every two weeks, and it has to have under a certain gram of sugar and the children like, I don't know this and the other, but they are the brand name cereals that they make with less sugar that I can purchase, but we can't purchase in the grocery stores.   01:45:10:17 - 01:45:49:05 Shunta Summers Why is that? So if something as bad as like, like Cocoa Puffs, something like that, I have the ability to buy it at 40% less sugar than at the grocery store. Why do we even offer that other alternative? So it would help our families that if they had to do processed, at least it was a healthier alternative. At a food show last week, Lady was like she was so happy that the waffle all we do the the food is all natural vegetable food coloring with same thing that they use over in Canada.   01:45:49:07 - 01:46:21:03 Shunta Summers So that's available food service wise, but not to the general public. So I'm just like, my gosh, where are we missing the ball? I mean, food science, it can be done. We're choosing not to do it. So you have to be very careful of what you put in front of your children to eat. And so that's one reason why I do choose not to have the well-known brands of foods.   01:46:21:03 - 01:46:32:23 Shunta Summers Even if we have a snack that is prepackaged, it's going to say a cinnamon granola bite, of course, is going to be less sugar than the post or Kellogg's version of it.   01:46:33:00 - 01:46:57:21 Erin Croyle I very much am right there with you with my frustration on this, because you're right, Canada and Europe have much more stringent controls in Europe. Things like Mountain Dew, which has terrible food dye, terrible amounts of sugar, like certain things, just they are not legal, but yet we sell them here. Yes. I feel like as parents, caregivers were up against it.   01:46:58:01 - 01:47:07:08 Erin Croyle And you mentioned the sugar content in cereal. So Cheerios like one gram of sugar, whereas Honey Nut Cheerios.   01:47:07:10 - 01:47:35:14 Shunta Summers wow. And that's not even we can't serve Honey Nut Cheerios because of the amount of sugar. But I can get it because it's available with the lower sugar content. And I'm like, So if you guys make it, why not just do away with the really bad stuff? That's the thing I don't get. Like I literally can buy not the honey, not too many food allergies, but there's apple cinnamon.   01:47:35:16 - 01:47:53:15 Shunta Summers But if you buy it in the grocery store, it is not credible. But when I buy it from the vendor, it is credible because they make it worth less sugar. I go figure, I don't I don't understand that. That's one of the reasons why we don't do very much of the the cereals. They're up for a little bit.   01:47:53:15 - 01:47:59:22 Shunta Summers And then by 930, 10:00, they're crashing again because they're hungry, because the cereal didn't fill them. Yeah.   01:48:00:03 - 01:48:27:15 Erin Croyle And what's scary to me is that for our children, it's anyone over the age of two is recommended less than six teaspoons a day. That's 25 grams. Okay, So if you think a bowl of Honey Nut Cheerios has 12, you're already halfway there. A 12 ounce can of Coca-Cola has 39 grams of sugar. And let's not forget juice, because if you're drinking juice, you're taking all the fiber out.   01:48:27:18 - 01:48:33:02 Erin Croyle And so it just turns into sugar anyway. I mean, what do you recommend with the whole Juice conundrum?   01:48:33:04 - 01:48:58:22 Shunta Summers Well, one of the things that we do well help to cut up the fruit that they can put into their water. Yes, you can do a 100% juice that doesn't have the added sugar, but it still has sugar in it. But as a parent, you can buy and you're thinking, I go to the store, I get Tropicana, because you're thinking, okay, this is wonderful, but there's very little of the real fruit juice.   01:48:58:22 - 01:49:20:22 Shunta Summers And there is certain things that I really do try to avoid and parents like, well, I don't understand. And once I start explaining that to them how that can have an effect on a child's behavior, sometimes parents are like, my child is hyper. And this. And yet I said, Well, especially at one, two years old, when they're really, really young.   01:49:20:22 - 01:49:47:17 Shunta Summers I said, Well, let us try to look at what their food intake is, because sometimes I'm not saying this all the time, but sometimes we can adjust their behavior with the food that they're eating and drinking because like I said, if they're coming in there with a big cup of juice, it's nothing but sugar. And then you also have the dyes, all the other chemicals in there too, that is just not needed.   01:49:47:19 - 01:50:10:15 Shunta Summers That really does have an effect on them. So a lot of times I tell the parents, let's start with that, because parents like, well, they don't drink milk. So I just gave them juice and I'm just like, my gosh, you know, that's not the same equivalent to say juice is equivalent to any type of milk that's just not.   01:50:10:17 - 01:50:27:00 Erin Croyle Drinks or such a hard one. Shunta What should we be giving our kids to drink? And I think there's a fallacy thinking that cow's milk is the best source of calcium. So when we're thinking about drinks, what's the best thing to drink? And also what's the best source of calcium?   01:50:27:02 - 01:51:03:10 Shunta Summers Honestly, water and I know they get tired of it, but that's one of the reasons why we try different ways to drink it. They'll try, like in the summertime when we cut up, the pineapples put it in there so they could taste it, just have a little infusion of the fruit in there. That's what I encourage is the water and then with the milk, I'm it's kind of hard for me because I have to follow the child and L food program, but I'm not really a big proponent on dairy getting your calcium from even other sources of dairy.   01:51:03:12 - 01:51:21:16 Shunta Summers Like you said, as long as is good quality yogurt, some cheeses, almond milk, you have your soy, your oat milk. I find that those are wonderful sources of the calcium. I really am not a big proponent. One cow's milk, although I have to.   01:51:21:18 - 01:51:47:18 Erin Croyle You mentioned before you see kids with food aversions and kids who aren't yet diagnosed. One thing I don't think we even realize are that some of our children's eating habits can actually be an indicator of potential neurodiversity or developmental disabilities. A good example is my own child. I could just see a lot of gravitating to sugar and just craving that kind of food.   01:51:47:18 - 01:52:11:16 Erin Croyle And as I learned more about my own ADHD diagnosis, I saw that they were looking for dopamine. And sugar is a really great, fast, cheap, easy way to get dopamine. It's not actually great, though, because not good for you, right? What do you see in your experiences of some of those food things and how they relate to potential disabilities?   01:52:11:18 - 01:52:50:09 Shunta Summers So probably one of the easiest things that we can tell is that the child really does not want to eat certain foods a lot of times is the the foods that are too soft for like a toddler or an older child. They don't like the like the applesauce or the really smooth foods that they can't bite into. On the other hand, we've also seen where children don't like the textured foods they like, spongy type soft foods that they can like mash in their mouth without having to chew.   01:52:50:11 - 01:53:23:23 Shunta Summers That's of the indicators to a food that is soft but not too soft. That's an indicator where there really is a true distinction, where the child's like and I don't want that because it's it's a little too crunchy or sometimes it's a little too soft. We definitely would see children that the cracker type foods that were harder to bite into where you had to bite and chew, that was another big indicator because that's a skill to learn how to bite and chew.   01:53:24:00 - 01:53:42:18 Shunta Summers So when they would just mash it up or they would almost stuff food into their mouth, so it would be in pockets in their mouth where they would let their saliva break down the food. So they're actually not chewing, so they're actually holding it in their mouth. You know, sometimes parents would like, they're just holding their food.   01:53:42:20 - 01:54:07:08 Shunta Summers They don't want to chew or they're stubborn. No, sometimes that's an indicator there's something going on. Yes. That they can't chew. Something is not connecting where they need to bite and chew and then swallow. That's one of the big things is textures. One of the things that I would see with the children that had the disabilities was the compacting of the food in their mouth.   01:54:07:10 - 01:54:14:23 Erin Croyle Yeah. When you see like sensory seeking or sensory avoidant behavior, it usually means you should talk to your pediatrician.   01:54:15:00 - 01:54:15:13 Shunta Summers Right?   01:54:15:13 - 01:54:34:13 Erin Croyle And it's something more might be going on. So I think it's important to monitor. You know, another thing that's really common with a lot of kiddos is overeating. And so that might be dopamine seeking behavior. I mean, how do you deal with overeating without giving kiddos complexes about?   01:54:34:15 - 01:54:58:09 Shunta Summers That's also an indicator with us where there's a signal that the child is not getting to say that I'm full now, that that definitely is another indicator. When their child is like especially a younger child, they're just eating, eating, eating. That would be a concern. And it may not always be that the child is overweight because a child and maybe burning calories fast because they're growing.   01:54:58:11 - 01:55:25:18 Shunta Summers So a parent may not always see it as, they're overeating, but when they cannot stop and it's obvious that for this portion size, it should be enough, That could be another indicator to being careful, knowing that the child's age and there's going to be times where they will need extra calories because they're just going through a growth spurt, but just being aware that it may be fine for like a week or two.   01:55:25:18 - 01:55:50:12 Shunta Summers But then once it goes on and on and on, that's when you need to start looking at maybe it's more to it than just the growth spurt. A parent was like, Well, they just can't eating. Then you have to look at what types of foods are you giving them, Because if you're giving them foods that are like empty calories, yes, they're going to be hungry in a short amount of time.   01:55:50:12 - 01:55:59:21 Shunta Summers So are they really over eating or are they trying to compensate for the lack of quality food that they have gotten in?   01:55:59:23 - 01:56:18:20 Erin Croyle Yeah, we both alluded to before some of those foods that they're made for us, even though they're heavy in calories or high in calories, they're made for us to digest and move through quickly to want more. Yeah, it's a matter of keeping in the house. I think what is best for everyone in the House. I think two more things I want to touch on.   01:56:18:20 - 01:56:40:13 Erin Croyle They complement each other. So it's it's one what do you see through your work but also through your studies? How does diet impact how children behave and interact with adults and people around them? What differences do you see when you see a child's diet change significantly for the better or worse?   01:56:40:15 - 01:57:08:17 Shunta Summers So when I see the child's diet change, let's say from a positive, there's times where the child is happier, less agitated, they can focus more so they're not just up jumping around like they can actually enjoy the moment that they're in less sick days. That's a big thing. There's less sick days because their immune system is stronger. They actually sleep better.   01:57:08:19 - 01:57:42:08 Shunta Summers So when I see the diet change for the positive, those are the big things that are just telltale signs. They can interact with people, whether it's other children and other adults to a better extent. When you see the the diet change in a negative way, the first thing there's more agitation. And unfortunately, I think sometimes there's more diagnose or misdiagnosis of a child's adverse behavior when it can be controlled.   01:57:42:08 - 01:58:32:01 Shunta Summers A lot of times with their diet, you have to do as best as you can. You can't help that there are certain things no person is perfect. But like you said, a child, they cannot express to you, to the adult. I feel awful. You know, I don't feel well. So when you asked me how diet does affect is not 100%, but it has a very, very high percentage on the outcomes of if a child does have a disability, how we can better help the child in the positive on that positive path to being a successful adult, to having a happy life, not saying that's the end all, be all the cure, but to eliminate as   01:58:32:01 - 01:59:09:21 Shunta Summers many obstacles and barriers as we can so the child can really learn and thrive, and even the family learn how to engage and support that child along that journey. Because, like you said, is a journey we're all going through is no book on every single child we're learning. So this journey, we try to give the best step forward and the easiest thing we can do is through our diet is not everything, but it definitely does have a route in that child's outcome.   01:59:09:23 - 01:59:37:12 Shunta Summers Is several children that I've seen like that that because they have such a poor diet, they have in their file, they are aggressive, they're hyper. Are they really? Or if we could make them a little more comfortable, like the child has problems with his problems. So then all of a sudden he goes to the bathroom and he can't control it because he has medication that has to go.   01:59:37:16 - 02:00:07:19 Shunta Summers So that's a whole nother bear. Now, what are we doing to his social emotional being, that aspect of his development? So his diet now has poured into not only his behavior, his social, emotional, he can't interact with other children because he he doesn't feel good. He has an accident on himself. He can't recognize that, you know, So it's so many different levels to this that if we just do diet, it can help in so many different ways.   02:00:07:19 - 02:00:28:10 Shunta Summers And I know that that that's not the end all be all because if you have a child that has various degrees on the spectrum, like you said, a child with Down's syndrome, one of my close friends, she has a child with Down's syndrome and my hackles all to her as well as you. It's so many different factors there.   02:00:28:12 - 02:00:52:16 Shunta Summers But the one thing that we can help as much as possible is with the diet. That's a start for anyone to look at, like you said, is an indicator for any type of issue that they may have. But also, if we can see it for the better, it can really change a lot of things. I've seen that I've seen that happen so many times.   02:00:52:18 - 02:01:17:22 Erin Croyle But it's also part of our medical systems where they don't stress to parents diet first, they medicate first. We are missing that connection to helping. And you think about sad when we think about sad, which is what we refer to as the standard American diet. Yes, right. I am anti fast food and it makes me feel awful if I eat fast food.   02:01:17:22 - 02:01:36:18 Erin Croyle So it just doesn't happen. And I don't really let my kids eat it. I think this summer was the first time they ever had Wendy's and it really hurt inside to let them eat that. But at the same time, it's going to be everywhere and it's this tough balance of what do you hold back? And you make them want more because you restrict it and doing the best for them.   02:01:36:18 - 02:01:49:12 Erin Croyle But we think about how food makes us feel. Think about that little growing body if we're not feeding it right and what it can do to their bodies and brains, it must be really hard.   02:01:49:14 - 02:02:28:08 Shunta Summers Where I live, I live in Chesterfield, where my center is in Richmond. I look at it, it's so obvious a kindergartner in my children's school versus a kindergarten in many of the other schools, their average weight and height is significantly different. Diet. The families out here, they had parents like you and me. They knew the effect that proper nutrition can have early on.   02:02:28:10 - 02:03:02:14 Shunta Summers So the children were much healthier, taller. They weighed more. They were just stronger. I see it all the time because I'm just like, wow, the children that are in kindergarten here, they're in Richmond. And I hate to say it for the most part, they're much smaller because they were raised on processed foods from birth up. I don't have statistics on it, but I know if I really pulled it, I just know I've gone through this one elementary school.   02:03:02:16 - 02:03:26:11 Shunta Summers All four of my children, we were there for 11 years. We celebrated the first year. We didn't have to go to that school bus stop for that elementary school. All of the children in general were much, much bigger. I'm not saying smarter, not anything, just in the height and weight themselves from the average child from the city of Richmond that I, I dealt with.   02:03:26:13 - 02:04:00:22 Shunta Summers And I know a lot of it has to do with the diet because the exposure to home cooked meals, preparing foods and just having the the education to know that there is a correlation between diet and brain development. That's one of the things that the people that are listening to your podcast right now, they are so much further ahead than the target that needs to hear this message because they're even listening to it.   02:04:00:24 - 02:04:33:21 Shunta Summers The people that really need to hear this, they're not it. And unfortunately sometimes they're getting it after the fact because we know birth to five and those critical times, those synapses are being built, we're not getting that message to the population that it's really it really does need to get out too early on. And that's something I I'm trying, but I don't know how to bridge that because those are the children that really do need to hear what you're saying about.   02:04:33:21 - 02:04:59:20 Shunta Summers The correlation about not having processed foods all the time. It goes into like not just the food deserts and everything, like in the convenience stores, the juices and I'm sure the juices, all the juices, the h

People with intellectual disabilities are sexually assaulted at a rate SEVEN TIMES HIGHER than people without disabilities. And that figure is likely a substantial underestimate, as it doesn't take into account repeated abuse or people living in institutions and group homes.  There are steps we can take to prevent abuse and empower our loved ones to protect themselves and understand the difference between healthy and unhealthy relationships.  We spoke with Molly Dellinger-Wray who leads LEAP - Leadership for Empowerment and Abuse Prevention - at VCU's Partnership for People with Disabilities and LEAP trainer Rose Sutton.   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES:  As Rose mentioned, caregivers need to take care of themselves, too!!  To register for the upcoming LEAP webinar on March 18th, click here! For more about Healthy Relationships and Abuse Prevention, check out LEAP’s website. LEAP is currently funded by the Individual and Family Support Program at Virginia’s Department of Behavioral Health and Human Services.  Partners in Policymaking is a leadership development and advocacy education program for people with disabilities and family members. This free program is offered across the country and online in some areas. PIP started in Minnesota in the late 1980s.  The NPR report on abuse can be found here. The latest statistics on abuse are here.  The Adult Down Syndrome Center/Advocate Health Care webpage has many adaptive visual aids to help people with IDD with various things. Including:  Bathing and Showering Sexual Health and Relationships Self Care and Hygiene Social Skills   01:00:07:20 - 01:00:34:11 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when a loved one has a disability. My new path started in 2010, when my first child was born with Down's Syndrome. I joined the Center for Family Involvement at VCU's Partnership for People with Disabilities a few years after he was born.   01:00:34:12 - 01:00:47:05 Erin Croyle Using my journalism and television producer background as a communication specialist, I have the privilege of bringing much needed attention to issues facing our community.   01:00:47:07 - 01:01:20:02 Erin Croyle Unfortunately, rampant abuse is one of them. NPR's 2018 report The Sexual Assault Epidemic No one talks About brought this to light. Correspondent Joseph Shapiro's yearlong investigation found that people with intellectual disabilities are sexually assaulted at a rate seven times higher than people without disabilities. And that's likely an underestimate, as the report notes, because government surveys used to compile this data don't include people living in institutions or group homes.   01:01:20:04 - 01:01:51:19 Erin Croyle These statistics are integrating heartbreaking and terrifying, but there are steps we can take to prevent abuse. That's why I asked Molly Dellinger-Wray and Rose Sutton to join me. Molly leads a program at VCU called LEAP, which stands for Leadership for Empowerment and Abuse Prevention. LEAP provides training on healthy relationships and information for preventing abuse to adults and teens with intellectual and developmental disabilities.   01:01:51:21 - 01:02:18:10 Erin Croyle LEAP was founded in 2014 and is currently funded through the Individual and Family Support PrOgram at Virginia's Department of Behavioral Health and Developmental Services. Rose Sutton is a disability advocate, autism specialist, mother and a sleep trainer. Molly and Rose. Thank you for joining me. Molly, let's start with you telling us more about LEAP and your involvement with it.   01:02:18:11 - 01:02:48:20 Molly Dellinger-Wray The Partnership for People with Disabilities has been addressing the problem of abuse and neglect of children with disabilities since, I think, 2015. They used to have a grant, a multi-disciplinary grant about teaching multidisciplinary teams about child abuse. And I got involved with that project and felt like we were providing training for law enforcement for school social workers, for court personnel, and for lots of adults.   01:02:48:20 - 01:03:06:10 Molly Dellinger-Wray But we weren't. No one was actually providing training to the people who really needed it, and that's people with disabilities. And so LEAP is taught by a person with a disability and a coach trainer to teach people with disabilities about healthy relationships in Molly.   01:03:06:12 - 01:03:14:05 Erin Croyle What is your role? So what brought you to the partnership and what got you interested in this sort of work?   01:03:14:07 - 01:03:51:10 Molly Dellinger-Wray My role started in positive behavior support and one of the things that we know on positive behavior support is we're always looking. We're like trying to solve a puzzle of why people may be struggling and exhibiting behaviors that make people around them frustrated and angry. And one of the big reasons for that is past trauma. And when you look at the statistics and the data surrounding the numbers of people who have experienced trauma and abuse, that can often lead to some challenging behaviors.   01:03:51:10 - 01:04:14:14 Molly Dellinger-Wray And so that sort of pulled me down the rabbit hole of thinking, you know, we really want to help people with the quality of life. We need to think about their past trauma. And because my background is in special education, I always think, you know, I would much rather prevent abuse than have to help someone work through it on the other side.   01:04:14:16 - 01:04:38:05 Erin Croyle Rose You and I actually know each other from Partners in Policy making the Virginia Class of 2013, which is a long time ago now for folks not familiar Partners in Policy Making is a leadership development and advocacy education program for people with disabilities and family members. The three programs offered in most states and I can put more information about that and leap in the show notes.   01:04:38:07 - 01:04:44:03 Erin Croyle ROSE Can you tell us a little more about yourself and what led you to become a lead trainer?   01:04:44:05 - 01:05:02:19 Rose Sutton So thank you for having me. For myself, what brought me to leap was after we had good partners in policymaking, I had learned how to advocate since where military family. I wanted to know what the rules and regulations were for the state of Virginia. So I went through that class and that opened doors for me. On being able to speak freely about different things.   01:05:02:21 - 01:05:25:15 Rose Sutton So when I found the AR that they were looking for late trainers, I was really interested in that because of my four children, two of them have autism. And at one point they were moderate to severe. And so I wanted to know for myself as a mother how I can help teach them how to be safe with relationships of all different types.   01:05:25:17 - 01:05:45:04 Rose Sutton And when we think about relationships, a lot of times you hear them think about only like boyfriend or girlfriend, those type of things. But we don't talk about paid staff members or are those type of things. And people with disabilities sometimes do not know that they have the right to say no to something or may not even know how.   01:05:45:06 - 01:06:02:05 Rose Sutton So I think that leap was able to give them practice on what it looks like, as well as being able to practice it while we're doing trainings, And I think that that's been very powerful, not only in my own home with my own children when we first started doing it, but I was able to practice on them to see how it was working.   01:06:02:07 - 01:06:22:22 Rose Sutton But I think that it's just very empowering to be able to catch them before end, to end, to help them really some of that energy and to be able to have a safe space, to be able to practice what it means that to have a relationship is not just if you have a boyfriend or girlfriend. It's all relationships, whether you're friends, whether you're strangers, anybody within your in your space or in your world.   01:06:22:24 - 01:06:43:15 Molly Dellinger-Wray And I just want to ask Rose, when we first got started with the leap and we had like a three day training program to train the trainers where we taught people about the problem of abuse happening and about relationship maps and setting boundaries. What was that like for you as a mom?   01:06:43:17 - 01:07:07:24 Rose Sutton For myself, coming from a family of abuse, also, but from the mother's perspective, having children with disabilities, my children can sometimes be very affectionate and very trusting. We see a lot of different specialists, a lot of different types of people daily, and they needed to know what it look like for when someone's trying to help you or when someone's trying to hurt you.   01:07:08:01 - 01:07:37:10 Rose Sutton And so it was important for me, especially when we started, because VCU and and, and Virginia board with people with disabilities, you guys had a program already set up. So we were learning it, but we also were able to give feedback on what that was like and if there was any types of things that maybe we needed to add or not or take out, which is really beneficial for me as a mom, as we were learning it back then, I was able to practice that on my children and see how it affected them and what they were learning.   01:07:37:10 - 01:07:58:05 Rose Sutton And with them being on different ends of the spectrum, it was really empowering. And so for me it's more of a passion of teaching this course, and that's why I'm still here, to give other people a chance with disabilities of all levels of disabilities permission and what does it look like? And to practice it because we can hear a lot of things, but we don't always know what that means or some of those things.   01:07:58:05 - 01:08:21:13 Rose Sutton We don't know what they mean. So being able to practice what this looks like and what does it feel like inside of our bodies and what that that little niche in your stomach, that's like something's just not right. It gives a name to those things. And I think that people with disabilities really need to understand that. And this training is so great because it's a series of before and each day built on the day prior and then adds on to more.   01:08:21:15 - 01:08:51:23 Rose Sutton And so I really like this program and as a special ed teacher as well, I feel that it uses a lot of our senses. And so the more senses we use when we're learning something, the more that we're going to retain it. And this thing is so repetitive within the training that I think that. But at the time it's so neat to see them a session for which is the final session and to really know what they've learned and what they took from it, and to be able to give that feedback to you all who provide, you know, the training opportunities.   01:08:52:00 - 01:09:08:02 Rose Sutton I think it's great because we're able to still provide feedback on what they're learning or what no longer works. And over the years I think it's just been really great as a parent and as an advocate to be able to share that with with the community. That affects my family directly.   01:09:08:04 - 01:09:35:02 Molly Dellinger-Wray Right. So LEAP is four sessions. Each session is 90 minutes, and each session because it's designed for adults with intellectual disabilities. We know you can't just say something once and people are just going to remember it. And so each session builds upon the previous sessions, so they hear all of the information from session one, they hear in Session two, and then we bring out a little bit of new information and then session three.   01:09:35:06 - 01:09:57:24 Molly Dellinger-Wray We hear about session one, session two, and then a little bit of new information until session for the last session, which just each session brings in a little bit of new information, but reiterates the previous information. And also what Rose alluded to was we we developed this project with funding from the Virginia board for people with disability to whom I'll be forever grateful.   01:09:58:01 - 01:10:16:16 Molly Dellinger-Wray And then we had an opportunity to really do research. And so we really needed to firm up figure out how we're going to measure that. This little leap was actually helping people. We knew people liked it a lot, seemed to have fun. And it is fun. It's really fun to train it and it's fun to participate in, I think.   01:10:16:18 - 01:10:44:01 Molly Dellinger-Wray But what we learned through our research is that people actually learned a lot better able to distinguish what a healthy relationship is versus an unhealthy relationship. And as Rose said, they developed a vocabulary to help them explain why a relationship was unhealthy. People might have known prior to the training that, you know, this doesn't feel right, but they couldn't really put it into words.   01:10:44:03 - 01:11:06:13 Molly Dellinger-Wray And so we discovered a big increase in that. And we also discovered that in a lot of opportunities, it's very easy to blame the victim and that people really kind of were better able to say, you know, this is not their fault that this happened to them. It wasn't because they were bad or they deserved it. Somehow. So that was nice to see that increase in that kind of knowledge.   01:11:06:17 - 01:11:08:05 Molly Dellinger-Wray Also.   01:11:08:07 - 01:11:34:14 Erin Croyle Let's take it back to that point before the training, because a lot of the people listening might not be able to attend to training or might not live in Virginia. I remember distinctly as a parent of a kid that has Down syndrome and very limited, traditional expressive language. It was at the arc and it was a law enforcement official who said Abuse it.   01:11:34:17 - 01:11:58:16 Erin Croyle Think of it as it's not if it's going to happen, it's when it's going to happen. And I found that to be very scary. But also very real. And to me, what makes that such a reality is that we teach kids, especially kids with intellectual and developmental disabilities. It's such compliance to listen and they always have people in their lives showing them what to do.   01:11:58:18 - 01:12:24:13 Erin Croyle They're having people help them change themselves at a later ages. And so there's this level of privacy and intimacy that they have with people that most non-disabled kiddos don't experience, like they're potty trained and they're dressing themselves at a certain point and it's done and the boundaries are there. Whereas people with intellectual and developmental disabilities don't get to experience or learn those boundaries.   01:12:24:15 - 01:12:33:00 Erin Croyle So what are some things parents should know about early stages? What sort of boundaries we should be setting up?   01:12:33:02 - 01:12:56:00 Rose Sutton So for myself, I think that one thing that's very important is two of my kids are neurotypical and then I have two that have autism and different things. And for me it was a big gap. It's very different because when I raised the first two, it was all about culturally, your is here, go give them a hug or so-and-so's here and we bring them in your house.   01:12:56:00 - 01:13:15:12 Rose Sutton We'll give them a hug and say hi. And it was fine. They did it and and on command. And the younger, too, one of my my older autistic son. So he's kid number three. He wasn't feeling that. And at first, as a parent, I think it starts with us to understand that sometimes they don't like the touch. Some kids don't like to be touched.   01:13:15:12 - 01:13:37:12 Rose Sutton Some people, you know, they see someone coming in, especially if you don't see the person very often and you're making them go and hug the person because they're a family member. And a lot of times those are the abusers, right? So the thing is that as a parent, I feel that one thing that we could do is to for the parent to become educated so that we can educate our children.   01:13:37:14 - 01:13:57:06 Rose Sutton And what I mean by that is give them some space, learn about what your child is doing. Learn about that. We need to teach our children how to ask permission and how do we do that? We need to practice it, right? So like Molly mentioned earlier, the repetition of things. This training gives it repetition. And so me as a parent, I change my mindset also with the repetition.   01:13:57:08 - 01:14:15:20 Rose Sutton Okay, let me let me tell them. Let me talk to them what they're doing. Let me ask them if they're ready to put their shoes on. At first that that backfired because my kids have sensory issues and so they were taking all these clothes off. And so I'm trying to put them on and trying to get them to get these things and the stuff comes right off.   01:14:15:22 - 01:14:39:06 Rose Sutton And so I have to learn how to understand what was happening before I could help my children. And I think that now, knowing the information that I have now has helped to be able to understand that kids need to know boundaries, you know, they need to be able to make choices if your child is nonverbal. I think that, you know, with our neurotypical children, we said, okay, what outfit do you want to wear?   01:14:39:06 - 01:14:54:09 Rose Sutton What color do you want to wear? What kind of shoes do you want? You know, are you into something? And I think that taking that interest into our children and giving them permission to say no. Now, of course, as a mom of four, you know, we don't want our kids talking back and we want that respect, you know.   01:14:54:09 - 01:15:18:20 Rose Sutton So I get that. But when it comes to keeping our children safe, I think that they really need to know that there are some things that we have to do, even though we don't like to do them. And there are things that they still will have to do even though they don't want to do it. And then there are some times where you have a boundary that you can have your own safe space, that if the child wants to have some quiet time, that they're able to do that.   01:15:18:22 - 01:15:37:15 Rose Sutton And my son, now that he's he's about to be 21 next month, he still uses, you know, when he comes home on the weekends or something. He always says that this is his safe space, like kids from a safe space. And so as parents, we need to understand that, that we all need somewhere to go to feel safe.   01:15:37:17 - 01:16:03:14 Rose Sutton And within our home, there are spaces that are safe. And so as parents, we need to practice as kids are very young. I mean, from from the moment that they're born is to practice these things over and over again daily. Make it a part of your habit so that children know that they have the right to say no, or that something makes them feel comfortable or that what they may have told you is going to be taken seriously and at least be looked into.   01:16:03:16 - 01:16:26:15 Erin Croyle Rosen I really love that you said that because our kids are just kind of forced to do so much from a young age with early intervention and all of these other things and letting them have that space is so important and letting them know that they can say no and the hugging and saying no to hugs. I just want to reinforce that.   01:16:26:17 - 01:16:30:03 Erin Croyle So thank you, Molly. Please go ahead.   01:16:30:05 - 01:16:54:10 Molly Dellinger-Wray So when we can model, as Rose said, like it's important that our kids, what we teach in LEAP is that you get to decide who touches you. You get to decide who touches you. And we can model that as family members by saying, you know, hey, is it okay if I give you a hug now? And if they say no, as Rose said, like, you got to respect that.   01:16:54:12 - 01:17:15:00 Molly Dellinger-Wray And and and making it fun. You know, if you're bathing a child and saying, like, is it okay if I wash your face? Now, if you ask them to wash their hair, my kids would have always said no. They were super tactile, defensive on their faces and heads, but just honoring that permission and asking and making it fun.   01:17:15:00 - 01:17:31:06 Molly Dellinger-Wray And you can make it fun by showing your child from an early age or from any age that their body is their body and they get to decide who touches them. And as Rose said, you know, go give your grandma a hug and go give your uncle a hug. Or also, when you receive a gift, your child receives a gift.   01:17:31:06 - 01:17:49:13 Molly Dellinger-Wray It doesn't mean that the person who gave them the gift deserves a physical touch. That's not part of giving a gift. That's that's different. Giving a gift certainly requires a thank you, but doesn't require a physical touch or a hug or a kiss. It doesn't.   01:17:49:15 - 01:18:12:18 Rose Sutton Also, what we see in this class, and even with one of my two, is that they just go and they want to hug everybody. They want to touch everybody. They want to give everyone a hug. So whether it's someone in your home or whether it's someone in the community, they just want to give hugs. And when the kids are little, people that are receiving it are like, your kid came up and said hi and whatever.   01:18:12:18 - 01:18:29:00 Rose Sutton Like, okay, But when they get older, especially males, unfortunately, you know, you're getting the hug from somebody out of the blue. And I remember my one of my first sessions with Leap the six foot two or really tall gentleman came and just gave me a hug. And it was like a bulldozer, right? He's like, come in. And he was hugging me.   01:18:29:03 - 01:18:53:08 Rose Sutton He was so excited. And it was like really hit home because we're thinking, okay, you don't know who's receiving that hug or if that person is a caretaker and feels that that might be in an affectionate touch or an inappropriate touch and they maybe take advantage of that, then that's where abuse comes in, is that you have these trusting students or these individuals with disabilities.   01:18:53:10 - 01:19:07:21 Rose Sutton And the problem is that sometimes they don't even know their own boundaries. And and so it's up to the person to be able to to guide them through that and the person being able to say no. And so we have to really watch that. Like we had a training. And what happened was, is that we were talking about permission.   01:19:07:23 - 01:19:27:03 Rose Sutton And what end up happening is, is that we do use words like consent or permission. Some of these words they may not understand. So what we do as trainers is we actually show them what that means. We we talk about what does even deserve even mean? What is that? What are these words that you hear people using? And we teach those things.   01:19:27:03 - 01:19:47:20 Rose Sutton And so last night we ended up having a whole hug session because all the participants wanted to have a hug. So myself, as the person with a disability and my coach trainer, we were able to oblige with that. But we also made them practice this as we were doing it to ask permission and different ways to ask permission.   01:19:47:20 - 01:20:11:02 Rose Sutton We actually had to improv and add that in because everyone wanted to touch and we had to be able to incorporate that into the session and we got a chance to practice it and practice different ways and it became such a fun experience for everyone and it was very important and they're very excited when they know we're coming back and they expect to know when we're coming back.   01:20:11:04 - 01:20:19:21 Rose Sutton And I think that is very important. To practice these things at any age is touch and inappropriate Touch and who can touch Molly?   01:20:19:21 - 01:20:21:13 Erin Croyle Did you want to add more to that?   01:20:21:15 - 01:20:44:08 Molly Dellinger-Wray You know, I love what we teach in Leap as how to say no. Everybody has a different way to say no. I think oftentimes what you read about is people saying that you should shout no and stamp your foot and be really forceful. But the truth is, we all have different ways to say no. And what's important and what we teach in Leap is you got to get out of the situation that makes you uncomfortable.   01:20:44:10 - 01:21:17:02 Molly Dellinger-Wray And you need to find a way that works for you. That's what's most important is stopping the opportunities from happening of things that might make you feel uncomfortable. But I think also when we talk about unhealthy relationships and that's that's what we're talking about, it's not not only sexual assault. There's lots of platonic, unhealthy relationships. And any parent knows that one kid that their kid is friends with, that they wish they weren't friends with because they see a lot of unfortunate power dynamics.   01:21:17:02 - 01:21:42:09 Molly Dellinger-Wray And so one of the things that we talk a lot about is what is a friend? Friend is sort of a term that we use fast and loose right now. Are your Facebook friends, your friends who are your friend and what is being a friend mean? And so we talk about a friend is someone who would never hurt you on purpose and who's going to work to help keep you safe.   01:21:42:11 - 01:22:07:16 Molly Dellinger-Wray That's what a friend is. And if someone hurts you on purpose, even though you might really like them or love them, that's not a healthy relationship that makes you feel uncomfortable. If that person you don't feel safe with that person, even though you might love them, that's an unhealthy relationship. And the way we categorize it is to put things into sort of three buckets and rows.   01:22:07:16 - 01:22:09:10 Molly Dellinger-Wray Do you want to talk about that?   01:22:09:12 - 01:22:17:12 Rose Sutton So we talk about unhealthy, unhealthy and confusing relationships and what that is, and we delve deeply into those and what they look like.   01:22:17:14 - 01:22:43:13 Molly Dellinger-Wray So we give people an opportunity to really look at a relationship and we spend a lot of time saying, we know relationships are not just romantic relationships, but you have a relationship with everyone. How do you feel when you're in this relationship and do you think you feel confused by it? We spend a lot of time talking about that, and I think talking about friends, I've spent a lot of time in special ed classrooms and hear teachers say like, Go sit with your friends over there.   01:22:43:15 - 01:23:07:18 Molly Dellinger-Wray Well, are they your friends because you happened to go to the same school together? Are they is everybody your friend? More people say, you know, a stranger is a friend I haven't met yet. You know, kind of not a stranger is a stranger. They might become a friend. We don't want to close that opportunity off to anyone. But the term friend is something that I think we need to be a little bit careful about.   01:23:07:21 - 01:23:27:13 Molly Dellinger-Wray And it's very difficult for people to separate friends from paid support staff because paid support staff help us with a lot of things and they do a lot of the same things that friends do. You know, they listen to you, they help advocate for you, they help you problem solve. But oftentimes they're not there when it's their day off.   01:23:27:15 - 01:23:53:14 Molly Dellinger-Wray Another thing is that as ran, this really goes back to the sort of the foundation of person centered practices is thinking about the language that we use to describe the people with disabilities in our life, who we love. And that is to start by describing them by things that we like and admire as opposed to their diagnosis or their deficits.   01:23:53:16 - 01:24:15:03 Molly Dellinger-Wray You know, he's non-verbal. He uses a wheelchair, a really saying he has a great sense of humor and he always makes me laugh. And he's really smart and he uses a wheelchair. It just creates a different frame surrounding a person that really presents them in a much more positive light.   01:24:15:05 - 01:24:47:22 Erin Croyle Minus all really interesting because it is so complicated because we're talking about individuals and every individual is so different. So something that resonates with me is that, yes, a lot of times you can look at the data out there and it shows that a lot of adults with disabilities, when they do activities like going to the movies or going to the store, going to a restaurant, it's often with family or paid support staff because friendships are so hard for a lot of kiddos.   01:24:47:22 - 01:25:19:03 Erin Croyle I mean, my son is one of them. It's really difficult. The middle school is really hard. On the flip side, there are other kids with intellectual disabilities I see who are have lots of friends and are very social. It just depends on the individual right. And so where do you find that divide? It's such a fine line trying to help children, adults make friends, but then making sure that those friends are safe friends and then making sure they understand that the paid support staff is not a friend.   01:25:19:05 - 01:25:49:19 Erin Croyle How are you going to navigate that? But also make sure that they are protected? Because when you look at the abuse statistics, it's almost always somebody that the person knows. And unfortunately there are predators that work in group homes and institution INS and even in schools who know, you know, there's grooming that's happening. So how do you help children, adults with disabilities understand that and navigate that effectively?   01:25:49:21 - 01:26:11:07 Rose Sutton So we have what's called a map of your world, and it looks like like a snail shell. So it's like a spiral thing. And we have a star in the middle of it. And in the star we talk about that is the person themselves and that they're the most important person out of all these people. As as we come out of that Star Space, we talk about some friends and families can be close to you.   01:26:11:07 - 01:26:34:20 Rose Sutton We talk about the different people in their world to include people that we no longer want in our world. And if they have a romantic partner. And so what we distinguish a lot of is your right is that because we, our kiddos, don't have a lot of friends sometimes now they turn to social media and they you friended them or you have a lot of gamers that have disabilities and they're able to speak freely or their language really comes out.   01:26:34:20 - 01:26:52:20 Rose Sutton You see a lot of that thing. And so they're like, those are my friends. And so we teach them how to set boundaries with those things and not to use your name with each group of people, we talk about what you tell these people in these different spaces. So if we come out of that little circle, we talk about what do you tell this person?   01:26:52:22 - 01:27:13:16 Rose Sutton How do you trust them? We really break down what trust even means and what that looks like to include that. The length of time that you've known the person, what do you tell this person? We show that by modeling that in the class, because a lot of times what happens? We go to these trainings and they see us come in and they immediately want to touch and hug and, you know my name.   01:27:13:16 - 01:27:35:13 Rose Sutton So now I'm going to go and I'm going to hug you. And we have to show them by modeling that that they need to ask permission. So we always stop them at the beginning. And so when we're talking about leave, we do extensively go into who is the friend. Your parents may be the closest person to you, you may tell them everything, but then it is not mean that you allow them to touch you inappropriately.   01:27:35:13 - 01:28:00:21 Rose Sutton So we really delve into close friends, friends that are just kind of friends that you see every day. Maybe you're at the same group home, maybe at the same day support. Maybe you don't even know their name. So we really, really dive in on what that feels like inside. We give it a name and we actually even use a Pulpex board communication board within the program for those that may need additional assistance.   01:28:00:21 - 01:28:17:15 Rose Sutton But it's so hands on and interactive that we're trying to use as many centers as we can to really differentiate who is just a friend, who is not a friend, who is a stranger, what is a romantic partner. If you were to have one. We see that a lot where it's like, well, I see her every day and we're in the same group.   01:28:17:19 - 01:28:37:17 Rose Sutton So that's my girlfriend. Do you actually know that? You both people know that and they feel sometimes that if they are boyfriend and girlfriend, that that gives them permission to touch the other person even when they don't want to be touched? We really delve into, okay, well, my friend gave me a hug in the morning and in the afternoon.   01:28:37:20 - 01:29:00:18 Rose Sutton I'm just going to hug them again and maybe the person is a wanted. So all of a sudden they don't want to be touched. And so we talk about someone who might change their mind, even talk about if you're in a romantic relationship, even if you are a boyfriend or a girlfriend and you're interacting with this person and maybe you're out on the outing, you can tell your partner, No, I don't want to be touched.   01:29:00:20 - 01:29:18:20 Rose Sutton And that person is going to respect that. So we talk about not only giving permission, but receiving that information, receiving those questions, and that sometimes people don't say anything. Sometimes you may ask the person, Hey, can I have a hug? And sometimes there's no response. So they figured, okay, well, they didn't say no, so let me go in there.   01:29:18:22 - 01:29:46:20 Rose Sutton We practice. What does no mean by going around the room individually and saying we throw out different silly ones like, Hey, can I have your hat? Hey, can I have your glasses? And we specifically practice saying that we practice practicing. Yes, we practice different things and we demonstrate different ways of doing that to include sign language. Here we include nonverbal communication and what it looks like in each individual type of relationship.   01:29:46:22 - 01:30:10:21 Molly Dellinger-Wray I want to add to that too. And when we talk about unhealthy relationships as family members, first of all, what I always say to people is there's no shame. And being in an unhealthy relationship, I talk about this a lot and I've talked to a lot of people and I have never met anyone who has not been in an unhealthy relationship at some point in their life.   01:30:10:23 - 01:30:32:01 Molly Dellinger-Wray That's important to remember. We are not all traumatized by those unhealthy relationships for the rest of our lives, but we all know what an unhealthy relationship feels like. And we've all been in an unhealthy relationship. And I think that's important to remember. And I always say to people, everybody's been in an unhealthy relationship. Your parents have been in one, the president has been in one.   01:30:32:01 - 01:31:01:21 Molly Dellinger-Wray Everybody has had an unhealthy relationship at some point in their life. There's no shame in that. And then also what we know about trauma and what we know about abuse is that if you experience something that seems unhealthy or even illegal, which is hard to discriminate, if you tell one person it doesn't have to be law enforcement, it doesn't have to be the YWCA, a domestic violence shelter.   01:31:01:23 - 01:31:35:23 Molly Dellinger-Wray If you tell one person that is the first step in getting to the other side of that trauma. So just one person and oftentimes it's a parent, although we can't assume that every child has a healthy relationship with their own parents, we want a trusted adult from school, a neighbor, a family friend, someone who is that person's go to person, that if they're in a relationship that makes them uncomfortable for any reason, that they can talk to this person.   01:31:36:00 - 01:31:58:13 Molly Dellinger-Wray And as adults, we do this all the time. We might have an interaction with somebody and say to a friend or or a partner, you know, wow, the weirdest thing just happened. I said this to the mail carrier and he said this to me, You think that's weird? I think that's really weird. And so we kind of process those things in our own way, and we want our kids to be able to do that, too.   01:31:58:13 - 01:32:20:13 Molly Dellinger-Wray To have one person who they can trust, who's not going to judge them, who's not going to blame them and say, well, maybe if you weren't wearing that, this wouldn't have happened. So we want to skip the blaming the victim and just be able to have that one person that they can trust and talk to if they're in a relationship that makes them uncomfortable in any way.   01:32:20:15 - 01:32:39:21 Molly Dellinger-Wray And the other thing, and I think most families know this now, is that you want to establish a code word that your kids can say or a phrase that's just a way for them to say, you know, I want to get out of this situation and I, I don't know how to do it. And I need help from an adult with my kids.   01:32:39:21 - 01:33:02:06 Molly Dellinger-Wray And I'm a parent of a child who is diagnosed with autism. Also, we had a code word for when he was with a friend that he wanted the friend to leave or he was at someone's house. So they extended an invitation and he didn't know how to get out of it. And with my daughter, too, we had a phrase that they would say and I'd say like, okay, you know, I'll step in and say, they've got to come home now.   01:33:02:06 - 01:33:09:07 Molly Dellinger-Wray We have stuff to do, but they can't be with you anymore. It's good to have that code word that a skateboard.   01:33:09:09 - 01:33:31:16 Erin Croyle It's interesting you say that because it was literally writing down as we're talking to. Remember, the question's not even a question for y'all, but so many of our kiddos. I say kiddos because our demographic here for the podcast are parents and caregivers, right? I'm not trying to contribute to the infant realization of people with intellectual disabilities. I think that's part of the abuse problem.   01:33:31:16 - 01:33:56:17 Erin Croyle Frankly, I think it's important that we look to our communication devices that our children use so they have a place on their device where they can have that safe word, but also have ways to report abuse. And I would encourage people to, even if your child is working with a speech therapist at school who uses devices to make sure that that's included in some of the work that they do, because this is such a ramp IT issue.   01:33:56:19 - 01:34:21:17 Erin Croyle In fact, the US Department of Justice, its most recent report, found that the rate of violent victimization against people with disabilities is almost four times the rate of people without. So that's 46.2 people per 1000 and that's age 12 or older. And then when you break it down by disability, those with cognitive disabilities have the highest rate, so it's 83.3 per 1000.   01:34:21:19 - 01:34:45:21 Erin Croyle And those numbers don't even account for the repeat victimization that we see. That's really common. You know, Molly, you and I have talked about this a lot. Some of the ways that we can prevent this because it just continues to happen. In my personal circumstance, we make sure that all of our kids know to say penis, vulva, vagina, breast, like we we have silly words, Sure.   01:34:45:21 - 01:35:03:15 Erin Croyle But we use the real words. So what are what are some ways that we can prevent abuse but also help our children be able to talk about whatever is happening to them so people can understand them? And when I say talk, I mean communicate in whatever way that we communicate.   01:35:03:17 - 01:35:31:02 Molly Dellinger-Wray Well, I think you you mentioned a really important one, which is making sure that kids know the correct name for body parts, but also that saying the word penis or vagina or vulva or anus is not dirty or secret or bad, that it's okay to say those words. It's not a word that you want to be shouting out at the mall or or whatever, but that it is it's okay to say those words that nothing bad is going to happen to you if you say those words.   01:35:31:02 - 01:35:55:19 Molly Dellinger-Wray So it's important that that they're just aware of those correct terms if they need it so that everybody understands what they're talking about. And if someone asks them a question, they know what that means. Like, did someone touch your vagina? So that's certainly a big step. What Rose had talked about is asking permission to touch and respecting your child's boundaries is another super, super important thing to do.   01:35:55:23 - 01:36:20:10 Molly Dellinger-Wray Just honoring what is a friend and having that trusted person is also really important and making sure that your child knows the rules for healthy touch. And the rules are you get to decide who touches you and the second rule is you can change your mind because someone touched you yesterday doesn't mean they have permission to touch you today.   01:36:20:12 - 01:36:55:10 Molly Dellinger-Wray You can change your mind and actually you can change your mind in the middle of them touching you if you want. When you say I want this to stop now, it has to stop now. And the other thing that we need to explain to people is that private touch is okay and sexual touches okay, as long as it happens between two people who consent and then it's an place, you know, we hear a lot about people with disabilities who want to touch each other sexually in a closet or in a and someplace where they can be alone, which is not an appropriate place.   01:36:55:12 - 01:37:18:15 Molly Dellinger-Wray I talked to a parents once whose daughter went out on a date, and when she came home, she said to her mom, He kissed me and the first thing her mom said was, Did you like it? Which I thought was such a great way to to honor and respect that child, was that this has to be something that you like and enjoy, you know, didn't make you feel uncomfortable.   01:37:18:19 - 01:37:43:06 Molly Dellinger-Wray And that's the other question. It is really kind of just checking in with people about is there anything that happened that made you uncomfortable? Is there anything we could do differently next time when you're with this person? You know, my child with a disability, he spent a lot of time in rooms with the doors closed, with speech therapists, an occupational therapists and tutors.   01:37:43:08 - 01:37:57:01 Molly Dellinger-Wray That's part of what is a necessity in life. But I think it's also something that we need to say. You know, is there anything that made you feel uncomfortable or you want to change for next time? Because if there is, let's talk about that.   01:37:57:03 - 01:38:25:04 Rose Sutton I'd like to add to that. So in our second day that we're there. We do talk about the body part and we talk about the names of them. And it was such an eye opener that one time we did go in and teaching them the appropriate names for body parts. Some of the kids, the students have never heard of those body part names because it's so much slang that's used that they were offended because we were use the proper names for these body parts.   01:38:25:06 - 01:38:45:12 Rose Sutton So we do explain that the reason why we have to learn the proper names for these body parts is because if you're in an accident or if you need to call 911 for any reason that you have to know what body part hurts. So we break it down per men. And then we do a female version. We're not taught to be able to talk about these things.   01:38:45:12 - 01:39:17:12 Rose Sutton We're not taught to understand that we're even allowed to even say these words. I mean, we you know, our kids go through sex education, but with this class, we actually go into it a little bit more. We actually talk on this difficult subject that we have like this little popcorn game. And what we do is to get the students laughing and giggling and to make a little bit more light of a very serious topic is we create a list by the students and they can speak it freely.   01:39:17:12 - 01:39:33:14 Rose Sutton And what we do is we start with men first and we start with them and then we do women separately. And the goal is to talk about all this language. So we say, you know, what are the slang words for men? Body parts? And you hear all different types of jargon that people use for slang words for people's body parts.   01:39:33:14 - 01:39:56:05 Rose Sutton And we talk about, you know, your ass or your tits or your boobs or your penis. I'm not your penis. I'm sorry, but your dick. And sometimes we hear people saying, My Wilson or Big Dog or you hear these things and someone on the receiving end, what that means. And so we really try to talk about it by practicing what's the words they probably hear.   01:39:56:07 - 01:40:20:04 Rose Sutton But what are we talking about? So we're giving them permission to be able to say these things. And sometimes when we go and this is the first time they've actually heard the proper term for these things. So that's really an eye opening and we give them permission to talk about it. And last night was such a cute group because we were talking about it and some of the students that were my deaf students really weren't feeling it.   01:40:20:04 - 01:40:42:03 Rose Sutton They must have been having a bad day. And we started talking about the body parts and giving them permission to actually say these words, which normally you don't hear them saying or you hear them just saying them loosely, really caught the attention of the students and really brought it to life by us. Just taking this difficult topic and making light of it and that it's okay to talk about it here with staff.   01:40:42:03 - 01:41:00:11 Rose Sutton But we also tell them, But you only can talk about these things here. We don't want you to go out and start saying these words randomly. we do want you to know where these things are appropriate to talk about. How do you appropriately say these things? And by giving them the opportunity to practice shouting out different slang terms.   01:41:00:11 - 01:41:17:18 Rose Sutton And some of them, we don't even know what they are. We write them down. They get to see that all we wrote their thing down. They matter. Their voice matters because we wrote it down on the board. You know, we wrote it down so that even if it was a duplicate, even if someone says another word, someone else had said, we still write it down.   01:41:17:18 - 01:41:26:18 Rose Sutton Why? Because that gives them power that what they said mattered. And it shows by it's on the board, something as simple as that. So it's a great tool.   01:41:26:20 - 01:41:50:18 Molly Dellinger-Wray And Rose, you do a really good job at teaching people the correct names for body parts and teaching that it's okay to say them. There are some trainers that are really uncomfortable talking about this. Rosa and I have worked with a lot of younger trainers who are really just out of school themselves and they're they feel a little weird talking about penises and vaginas.   01:41:50:20 - 01:42:07:16 Molly Dellinger-Wray And I I'm not faulting them, although we do say this is part of being a lead trainers. You have to be able to say these words without flinching. And Rose, you just do such a great job with it and just has fun with it, you know, just have fun with people while you're going over it. You just do a great job.   01:42:07:18 - 01:42:22:24 Rose Sutton And thank you. I think part of that is I take it to heart when these students come to me that I feel like I'm training one of teaching one of my kids. And in sex education, I don't think that we get the opportunity. We're just shown films, We talk about these different things and we want our students with disabilities to remember these things.   01:42:22:24 - 01:42:37:21 Rose Sutton And so we make fun of it, and then we talk about what is appropriate, and we even give them permission that if they feel a little uncomfortable, put your hand over your heart or raise your hand or step out for a moment if you're allowed to and understand this is a little bit uncomfortable and we're trying to help you through it as best as we can.   01:42:37:21 - 01:42:59:03 Rose Sutton And in the sessions, we usually don't have their caretakers or their aides or their in the room so that we can get them by themselves to just talk to them. But yesterday was so great. So we had a lot of interaction and it makes it a lot more fun because the kids are able to just say words they normally can't say.   01:42:59:05 - 01:43:13:04 Rose Sutton And we did it in the safe space and talk about, you know, that it was a safe space and we were giving them permission to to talk about it. And they're not used to getting permission to say those bad words. And so we gave them permission to do that. It's a really great program.   01:43:13:06 - 01:43:39:11 Erin Croyle Because you bring up such a good point. And you mentioned sex education and LEAP is way more than that. But when we think about what our children are taught in schools, we talk about modifying curriculum, but we don't do a good job modifying sex education. And then I think about when you have self-contained classrooms, you have a completely different experience from what a lot of other non-disabled students have.   01:43:39:13 - 01:44:04:20 Erin Croyle And my house is different because we're very, very open. My mom was a nurse. I've always talked openly about body parts and all those things, but I think about some families who there are words that are just not okay and people who are not comfortable saying penis or breasts or whatever. And so it's really code words. But I also see my 13 year old son with Down syndrome who loves to say penis and finds it hilarious.   01:44:04:20 - 01:44:24:07 Erin Croyle And so to give people space to be who they are and be the adults in the silly sexual, ridiculous humans that we all are, that sounds like a really great way to be able to relate and get them to open up and learn because we learn through having fun, don't we?   01:44:24:09 - 01:44:49:00 Molly Dellinger-Wray And what is what you said to Erin about, you know, oftentimes kids with disabilities are excluded from family life education, or they have to participate with permission from a family member who's uncomfortable with it. So oftentimes they miss out on that. And what I always say about Leap, which I don't think we mentioned earlier, LEAP stands for Leadership for Empowerment and Abuse Prevention.   01:44:49:05 - 01:45:26:04 Molly Dellinger-Wray And I'm pretty clear that a lot of what they talk about is family life, education, our sex education, our topics that we talk about and leap as far as consent, but leap just to kind of stay in our lane. Leap is not about dating. It's not about social skills. It's not about sex ed in terms of what goes where it's healthy relationships and healthy relationships affect all of us, whether there are relationships with our family members or with our peers at school, or with adults who are in our lives or our neighbors or people that, you know, on the Internet.   01:45:26:04 - 01:45:46:06 Molly Dellinger-Wray They're all relationships. And those relationships are in those three buckets healthy, unhealthy or confusing, even if you've never met the person, if it's an Internet relationship, if you've never had a relationship face to face with that person, those kinds of rules about healthy relationships apply to all relationships.   01:45:46:08 - 01:46:12:19 Erin Croyle I want to take a minute here. When we're talking about relationships, we're all parents and we are the ones that are modeling for our children. What a relationship should look like. And I want to be very, very real and transparent here. For anyone listening as parents, and especially when you have a child who has significant needs, it can be really hard.   01:46:12:21 - 01:46:37:24 Erin Croyle And we are imperfect people. And I will admit that there are times where I have yelled at my son or got frustrated with my son and even lately just helping him make sure he's bathing properly and, you know, maybe him being frustrated with me washing hair or whatever. And I find myself thinking, okay, I'm his mom, so okay, there's a boundary, but less of a boundary.   01:46:37:24 - 01:46:58:14 Erin Croyle But he's 13, so there should be a boundary. And so when I cross the boundary myself, because we do and I do things I regret all the time, I find myself saying, Arlo, I'm so sorry. You're right. I shouldn't have blah, blah, blah. You have every right to be mad and to say no, and I'm going to respect that next time and please keep sticking up.   01:46:58:16 - 01:47:19:18 Erin Croyle So what's the line for parents between what is just normal every day? This is hard frustration and parents. Okay, This is borderline abusive. And how can we take what we're doing and make sure our kids are learning what's right from wrong, even though we are imperfect and making mistakes all the time with them?   01:47:19:20 - 01:47:46:14 Molly Dellinger-Wray I absolutely agree with you. There were times with my own kids that I would say like, I'm so mad, I'm putting myself in timeout. I'm going screw and closing the door and no one even opened it. So I think we all have these moments of, my gosh, have I have I been a terrible parent? And I think one thing to notice is that abusive relationships are different from anger management.   01:47:46:20 - 01:48:08:23 Molly Dellinger-Wray Okay. So when you hear about anger management or people that have a problem with anger, that's like someone who's going to punch somebody out in front of a policeman or for basketball fans. I also think about the technical foul. The person who deliberately does something in front of a referee that is going to get them in trouble. That is an anger management issue.   01:48:08:23 - 01:48:40:10 Molly Dellinger-Wray And when you snap at your child or you've had enough and it's one of those days and it's a one and done, that's not abuse, okay? Abuse is very calculated and perpetrators of abuse are very, very it's not losing control. They are extremely controlled. They control when they're have opportunities to be alone with that person. They take a long time to really create those opportunities that they can weasel their way in.   01:48:40:14 - 01:48:53:17 Molly Dellinger-Wray So it's very different from, as I said, a one and done parent who's angry with their child and blows up. That's not abuse, that's being angry. And oftentimes it's very justified. Anger.   01:48:53:19 - 01:49:14:16 Rose Sutton I think that touches on a good point because we do talk about feelings in this class a lot and that it is okay to have certain failings, even if someone else does not have those feelings. And in this training, we have a power statement and we do it at the beginning and at the end of every session and it says I am strong, my feelings are important, I deserve to feel safe and I deserve respect.   01:49:14:16 - 01:49:34:17 Rose Sutton And we talk about what those things are. So as a parent and, you know, for myself, there are those power struggles and that is why early intervention is really key. Because if you can model these things and practice these things, eventually you can build on an each time. So like for my kids who are on different ends of the spectrum for the younger two kids, they have boundary issues.   01:49:34:19 - 01:49:56:08 Rose Sutton And so we really had to practice that. And in order to keep myself calm was to kind of learn about it myself to either get help if I did not know and to give myself permission to to know that I am an imperfect person and then I am going to make mistakes. But being woman enough to demonstrate that, I can say to my child, you know, I'm sorry, I was wrong.   01:49:56:08 - 01:50:20:05 Rose Sutton So like you said, Erin, for us as parents or even caretakers to demonstrate that sometimes we even make mistakes and there are times, yes, we do have to wash their hair. We do have to touch them. And you're right, as my son was getting older and my husband being deployed, a lot of times I wanted to set an appropriate boundary on making sure that he cleaned properly.   01:50:20:07 - 01:50:44:24 Rose Sutton And so I learned techniques by asking, you know, their providers and other parents, how can I give him space as a young male to be able to properly do hygiene? And so what we ended up coming up with was a picture schedule that we laminated and put in the shower. That way I was able to give him space and my son, he wanted like all this hair and he did not like to have this haircut.   01:50:44:24 - 01:50:58:17 Rose Sutton So we had all this hair and so he did not like us touching it because we were going to mess it up. And so I had to explain why I needed to wash his hair and that we would do it at a different time, that it didn't have to be when he was taking a shower. We would do it separately.   01:50:58:17 - 01:51:15:22 Rose Sutton So that way he was dressed and I was respecting his boundaries that he was that I acknowledge that he was developing into a young male. So like you said, Arlo's 2013 and my Christian, he he was incontinent for a long time. I mean, till he was like ten, you know, he didn't want me to go in there and clean his bottom.   01:51:15:22 - 01:51:41:03 Rose Sutton If I did try to go in there, he would get very upset. So I had to honor that. And it's very a different type of parenting, especially when my older two were neurotypical to to catch my own self on what I'm doing inappropriately. And once again, to find something that worked for that time. And when you finally think that you have the right solution and it's working and you're like, Great, this is working, can wash his own hair.   01:51:41:05 - 01:52:01:05 Rose Sutton You can take his own bath. We do a smell check afterwards, and we still we figured out that he missed some place. We send him back in. You think you have it and you're on a routine and then something happens and then it changes. So as a parent, you know, we want to be flexible, you know, and how can we adapt these things to make it that you're empowering them on making decisions.   01:52:01:05 - 01:52:19:02 Rose Sutton And if you have to do something that that may be inappropriate or you're washing your child, you don't want to go and then have to wipe the child's, you know, But so as a parent, you have to teach them, are we going to do this that is appropriate for them to do it on their own? And there's different techniques and.   01:52:19:02 - 01:52:35:22 Rose Sutton It's really hard to find the right one. So as more to the parent, you try to figure out what is the best source, but like you said, is by educating ourselves or learning or talking about or just trying something randomly, just trying and seeing how you can get your child to you want to empower them on how to be able to do it themselves.   01:52:35:22 - 01:52:53:11 Rose Sutton And it takes a lot of work and it can be very stressful. And I always tell parents, you know, you need to practice self-care and what does that look like? And for me, I didn't even know what self-care is because you're constantly on the goal. You're constantly having to make sure they. Both of my kids were loopers, so I'm having to chase them down and I'm constantly tired.   01:52:53:11 - 01:53:14:06 Rose Sutton They don't sleep, they don't like touch, they don't like certain things. So as a parent, you're constantly going, but if you think about it this way is that if you can empower your child to do these things for themselves, yes, it's a lot of hard work, but then you don't take a lot of load off of you and you're empowering them to be able to set their own boundaries so that way a lot of us parents, we worry about what happens when when we pass away.   01:53:14:12 - 01:53:30:04 Rose Sutton Well, if you can teach them every little step as you continue to grow, that that repetition will eventually build to where you won't have to even think about it anymore, where they'll have some understanding of what is appropriate, what is not appropriate, and how to handle some self care on their own.   01:53:30:06 - 01:53:46:08 Erin Croyle Rose I'm like internally clapping because everything you said is so spot on. And I love the idea of the picture schedule for the shower. I'm going to try that because I think for all my kids, honestly, hygiene and at a certain point they.   01:53:46:08 - 01:53:47:19 Molly Dellinger-Wray Don't quite get that you.   01:53:47:19 - 01:54:12:21 Erin Croyle Need to wash certain spots or you're going to be the stinky kid. And I love that. You also said you have to just keep trying different things because I know for privacy, whatnot, there's all sorts of social stories out there and I'll put some links in there for social stories and other strategies that people can use for some of these really touchy things that have to do with privacy and showering and toileting because it is hard.   01:54:12:24 - 01:54:30:19 Erin Croyle And in my own experience too, sometimes you try and try and try and sometimes you just have to give them the time to get to that point. So you may be pulling your hair out, but it it'll be something else. Once they master the thing you're trying, they'll be something else to do. But anyway, Molly, you have a heart out.   01:54:30:19 - 01:54:56:06 Erin Croyle So I want to get to just at least two more questions. And one of them I really want to know because you two will probably know what are signs of abuse. I mean, especially when communication is nontraditional or limited. What should parents, caregivers, teacher, whoever is listening, what should we be looking for if our person is not able to communicate it?   01:54:56:08 - 01:55:29:17 Molly Dellinger-Wray Well, that's a really good question. And what I say is every parent knows their child and if their child doesn't communicate with words, they have another way to communicate. And so parents know their child. If there's a change that you don't understand, if there's a behavioral change, sleep problems, problems with not wanting to bathe or keeping a lot of clothes on, or just a behavioral change, that's something like we we just need to investigate that.   01:55:29:17 - 01:55:59:18 Molly Dellinger-Wray And it could be a number of things. It could be an illness, it could be any number of different things. But any kind of change, just as something to kind of have your antenna out for. As I said, also, I left my kid in rooms with adults and the door closed hundreds of times and thankfully had the most wonderful adults in my child's life and a lot of early intervention that really created such a difference for him.   01:55:59:18 - 01:56:24:23 Molly Dellinger-Wray And I am eternally grateful for every single one of those people that helped him. But not everyone is that person, and a lot of people who seek power seek out opportunities to work with a very vulnerable population, and that is AIDS and special education classrooms and people who work in nursing homes. And, you know, a lot of of those opportunities.   01:56:25:00 - 01:57:00:11 Molly Dellinger-Wray And so just honestly, just being aware and acknowledging the hard fact that a lot of kids with disabilities do experience abuse. And then the other thing to remember is if a child does experience abuse, an unhealthy relationship, a sexual, there are lots of ways now to come out on the other side of that. So they will not be scarred for life and they can grow up to lead rich, healthy adult lives with healthy sexual relationships.   01:57:00:13 - 01:57:23:15 Molly Dellinger-Wray On the other side of that, the the main thing is that it is not compounded by shame and guilt. And one of the biggest things that we do as family members and our parents and adults said to us are the don't rules. Okay. One of the don't rules to keep yourself safe. Don't get into a car with someone.   01:57:23:17 - 01:57:59:21 Molly Dellinger-Wray Don't talk to strangers. One woman with a disability told me, don't sit next to a man. And so we teach. A lot of these don't rules, but what we know is that perpetrators are really clever and we don't like to think of this. But perpetrators are super smart about creating opportunities with potential victims. And so what we want to do is not have our kids be a soft target for those people, but also to not create a lot of shame surrounding, my gosh, I got into a car with someone.   01:57:59:21 - 01:58:22:03 Molly Dellinger-Wray This is all my fault. I wore a sexy dress. This is all

Self-care is something we all need to do. But for many of us, it's an elusive practice. Caregivers are working harder than ever. Which makes self-care more important than ever. Knowing how real this struggle is, I reached out to my friend and chiropractor Dr. Sarah Gardner. She gets it, and has so many practical, doable ideas for how we can make self-care happen!   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES:   Dr. Sarah Gardner is co-founder and co-owner of FLX Athlete Retreat.    All of the suggestions for movement, hydration, nutrition, apps, and much more are here.      TRANSCRIPT: 01:00:07:23 - 01:00:35:00 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives takes when a loved one has a disability. My beautiful tangent came in 2010 when my first child was born with Down's Syndrome. I joined the Center for Family Involvement at VCU's Partnership for People with Disabilities. A few years after he was born.   01:00:35:02 - 01:00:58:14 Erin Croyle Utilizing my journalism and television producer background as a communications specialist, it's amazing to be in a position where I can share stories unique to families like ours. One thing we talk about in our circles, but certainly don't do enough of is self-care. In fact, many caregivers I know scoff at the idea, myself included. It's not that we don't see its value.   01:00:58:18 - 01:01:21:22 Erin Croyle We just can't seem to make it happen. The lives of folks like us who are caring for a loved one for life are just different. The physical, mental and emotional demands are constant. Even if you manage to get some time away, there's no time off when someone you love needs constant support. This is why basic self-care is so critical for us.   01:01:21:24 - 01:01:46:11 Erin Croyle So how do we make it happen? To talk about this, I've invited my friend and my chiropractor, Dr. Sarah Gardner, on. She and I have been shooting the breeze for nearly two years. I found this amazing woman while recovering from hip surgery. Dr. Sarah gets it. She provides care with compassion and understanding in our many hours together, we've laughed at how ridiculous fad diets are.   01:01:46:13 - 01:02:00:22 Erin Croyle We commiserate on how impossible it is to juggle it all as parents. We praise the Almighty Oatmilk latte and we swear way too much.   01:02:00:24 - 01:02:25:02 Erin Croyle Sarah, thank you for spending some of your precious free time with me. For our listeners, I just want to paint a picture here. You're a mother of two, a business owner and ultra marathoner who's married to a CrossFit instructor. You're all about body positivity and health at any size. You stressed the importance of rest and having fun. The times when I've come in and admitted to you that I haven't done any of the things I should have.   01:02:25:03 - 01:02:49:07 Erin Croyle You validated how hard it is and encouraged me to just try to do one or two things. I always leave our appointments feeling heard, understood, and more hopeful. The business, by the way, is Flex Athlete Retreat, located in the Finger Lakes, Ithaca, New York, to be precise. It's this little haven where you have chiropractic services. Your colleagues do massage therapy and acupuncture.   01:02:49:09 - 01:02:56:01 Erin Croyle The space is this oasis with an amazing green velvet couch. Did I sum it up correctly?   01:02:56:03 - 01:03:16:16 Dr. Sarah Gardner Yeah, I think you summed it up. Thank you for the introduction. I think the first time I met Arlo was on the green couch, so some good memories there. And yeah, absolutely. The almighty book Milk Latte is what powers me through my day most of the time. Yeah, I'm pretty in it in terms of trying to figure out that work life balance.   01:03:16:17 - 01:03:26:11 Dr. Sarah Gardner My kids are two and seven and this business basically eats up my entire life. So I think I think you got it all correct there.   01:03:26:13 - 01:03:38:05 Erin Croyle I always love hearing people's origin stories. So what drew you to this kind of work? And then also, I'm really curious how your perspective has changed over the years, seeing so many different people.   01:03:38:07 - 01:03:59:06 Dr. Sarah Gardner Yeah, so I was a collegiate track and field athlete. I read Cross Country as well, and then I had an injury my freshman year and I was just really kind of underwhelmed with the way my Western med practitioners handled it. They weren't making contact with the problem area, vaguely listening, but kind of just throwing and NZ at it.   01:03:59:06 - 01:04:36:15 Dr. Sarah Gardner And I just felt like we could have managed that a lot better as a team. So I became kind of disenchanted with Western medicine. My undergraduate studies were an exercise physiology, which is just pretty broad spectrum. Learning a lot about human movement and biomechanics and just general health and biology. And we actually had a chiropractor come and speak to one of my survey classes and described what he did, and it was one of those moments for me where it was like, I can take everything I learned and have loved about biomechanics from being an athlete and really combine it with health care and caring for people and sort of contribute to the world   01:04:36:15 - 01:05:05:23 Dr. Sarah Gardner of sport for years after when I'm able to be a competitive athlete myself, I think my my goal when I started out was to just kind of create a space where people felt safe and listened to just because that hadn't been my experience, the whole other podcast. But yeah, and I think breaking down that doctor patient boundary and fostering trust and open communication with my patients with the goal of creating better outcomes and I do think that that's worked over the years.   01:05:06:03 - 01:05:36:08 Dr. Sarah Gardner And then as far as my perspectives changing, it really has I started off marketing specifically to athletes just because that's the world I came from. But I get to talk to, let's say 6 to 14 people a day, one on one for 30 to 60 minutes. And so my understanding of how we define athlete has definitely evolved over the past ten years, just because I've learned and appreciate so much differently the physical, emotional and mental demands of everybody's day to day.   01:05:36:09 - 01:05:55:23 Dr. Sarah Gardner So when my business is called athlete retreat, but really we  treat everybody. I mean, we have people in the perimenopausal stage, we have people giving birth, we have teenagers, we have older adults, we have people recovering from surgery like yourself. So, yeah, it's we get to see a pretty diverse patient population. So yeah.   01:05:55:24 - 01:06:18:02 Erin Croyle Yeah, you must see caregivers that some of us have a lot of strain on our body just because we care for another person so intensely. It's really a lot of effort. In some ways, I know that some of my friends, some of the lifting that they do and some of the work that they do is is on par with heavy lifting and athletics.   01:06:18:02 - 01:06:19:03 Erin Croyle Yeah.   01:06:19:05 - 01:06:41:08 Dr. Sarah Gardner my God. I think that I mean, really what it boils down to it, everybody I see is a caregiver in some way. I have a ton of parents with children with or without disability. I have people caring for their parents, which I think is very challenging and a new chapter in a lot of their lives. So a lot of emotional stress which can manifest physically.   01:06:41:10 - 01:07:03:19 Dr. Sarah Gardner Everybody has these different things that they're caring for that are occupying a lot of space in their mind and body. Obviously, the most obvious definition of caregiver comes with caring for children, caring for an elderly relative, or caring for a child with disability. And those are where I see the most physical challenges versus the emotional strain that can also be very pervasive.   01:07:03:21 - 01:07:22:19 Erin Croyle One of the other things that I just love about you and why I just have to talk about this is that you keep it so real. You know, when I share with you in our sessions how hard it is to fit in strength training and you share your own struggles, like how you're doing this ten minute a day movement challenge.   01:07:22:21 - 01:07:44:22 Erin Croyle And then even though you're this accomplished athlete, it was hard at times. yeah. So when you're thinking about caregivers who are just up to their ears in it all the time, what can they do to build and maintain strength? Think about the beginners out there who might just be getting started. You have people who they get started and then things hit the fan.   01:07:44:22 - 01:07:46:18 Erin Croyle Kind of like me.   01:07:46:20 - 01:08:05:13 Dr. Sarah Gardner Sir. Well, I think the first thing we can do is take it just to define strength training. I think the form of exercise that everyone is the most familiar with is cardio. And that's where you're you're running, you're on the bike, you're getting your heart rate up, you're sweating, and you're really working your cardiovascular system and your circulatory system.   01:08:05:19 - 01:08:26:19 Dr. Sarah Gardner And that's incredibly important as well. And I don't think people struggle as much to identify ways that they can get cardio and. Right. You know, we all know we can take a walk. We all know we can we can bike whatever strength training is a little harder to pin down in strength. Training is any form of exercise where you use resistance to strengthen your muscles.   01:08:26:21 - 01:08:49:06 Dr. Sarah Gardner So I think that the go to for most people's minds is to picture like the big, neat, heavy type at across the gym, like my husband throwing around these huge weights. But that's really doesn't need to be our definition of strength training. I mean, we can look at ladies power, yoga, bodyweight exercise, resistance bands, all of these are different types of strengthening exercises.   01:08:49:08 - 01:09:17:01 Dr. Sarah Gardner And there's really no one size fits all for everyone that's going to be determined by your interests, your experience level, if you have any preexisting conditions or injuries, space, that it requires accessibility to a gym and no one is better than the others. So I think now that we have defined strength training, this is the tough one. We need to sort of reframe the paradigm in our mind when we're strength training for life instead of straight training for a sport, right?   01:09:17:03 - 01:09:42:01 Dr. Sarah Gardner So the trajectory when you're doing that looks a little bit different. And so you had mentioned the people who sort of get into it and then they fall out of it and they have to start from square one. And I think we have to start talking to ourselves that way and making it seem like the work we've done in the past doesn't count because it does count, you know, and just because you stepped away from an exercise for a while doesn't mean that you're starting from scratch.   01:09:42:01 - 01:10:04:07 Dr. Sarah Gardner You are still stronger than when you had done no exercise before. When we think about it like restarting and starting from scratch, that's a really real mental barrier for people. So if you're thinking about it like a continuation of something you already started, I don't think it seems so daunting. Do you know what I mean? So I like to think about it as a slow burn versus an explosion.   01:10:04:07 - 01:10:30:13 Dr. Sarah Gardner I would so much rather somebody choose a type of exercise that's maybe lower intensity, but they're able to do it consistently, maybe three times a week versus somebody going really hard with CrossFit. And I don't mean to speak ill of CrossFit, I love CrossFit, but something more high intensity like that where you exhaust yourself and you burn out and you can't recover and then you're taking weeks off at a time and then you are upset because you didn't meet your own expectations.   01:10:30:15 - 01:11:04:14 Dr. Sarah Gardner So I think having realistic expectations is almost as important as finding the type of exercise that works best for you. So that kind of leads me to my next point, which is I'll use myself as an example. I run ultramarathons and I ran one back in September with Koven, which was we're going to we're going to leave out the adjectives that I might use to describe that, but I think I'm dealing with a little bit of long-covid, and I just continued to try to push through it with the types of exercises I was asking myself to do.   01:11:04:14 - 01:11:20:19 Dr. Sarah Gardner I was still trying to run. I was still trying to weight train and it just wasn't working and I was exhausted. I couldn't recover and then I would take like a week off. I'd be upset with myself. And finally, I think during that little reset between the Christmas and New Year, I was like, You need to stop working against yourself.   01:11:20:19 - 01:11:38:13 Dr. Sarah Gardner Let's try something lower impact to work with my body instead of against it. So I've been doing a lot more Pilates, I'm doing a lot more yoga. And I think when you're coming from that place where you were an athlete or, you know, you used to be more active, it's really hard to be okay with lowering the intensity.   01:11:38:15 - 01:11:58:02 Dr. Sarah Gardner At the same time, I'm really appreciating the benefits of those exercises without exhausting myself. It wasn't realistic to keep asking myself to push through what I was experiencing. I am feeling a lot better now, but I definitely was able to get back into a better rhythm by pulling back a little bit and being realistic about my expectations. That's kind of my point.   01:11:58:02 - 01:12:21:21 Dr. Sarah Gardner There is obviously have goals, but don't set unrealistic expectations for the frequency or intensity of the type of exercise you're choosing. And also feel free to try new things. You're not committing to one form of exercise for the rest of your life. You're not getting less benefit because you're not doing the same thing all the time. In fact, I think you're probably benefiting more from switching it up and you're not going to stick with something you don't like.   01:12:22:01 - 01:12:29:17 Dr. Sarah Gardner If you're finding something isn't the right fit for you. Just know that having fun is the biggest key to consistency with exercise.   01:12:29:19 - 01:12:50:10 Erin Croyle Absolutely. I know it's funny. For me personally, running is this huge stress relief. Like, I just feel better, right? It's not the same when I walk. And so when I was injured so long, I felt it. But also at the same time, there are days you do that mantra where it's like, just go out for 10 minutes. Yeah, I don't.   01:12:50:10 - 01:13:04:06 Erin Croyle I went for a run yesterday and I was miserable. I hated every minute of it. How do we find that divide between something we find joyful and movement and also just making sure we move?   01:13:04:08 - 01:13:17:03 Dr. Sarah Gardner Yeah, I totally get that. And that's one thing that I always kind of tell myself that I also love running and I don't ever want to get to the point where I resent it and don't want to do it. And I think the biggest thing that I've learned is that sometimes I need to step away and I need to take a break.   01:13:17:03 - 01:13:33:04 Dr. Sarah Gardner And when I start to get that itch, like, I really want to go for a run, it's like, where, you know, we're back to a healthier place with it. Now I'm going to start running. If you start to force it, you're going to start to hate it. You don't want to get to that place. And I think that's where you want to explore different types of movement.   01:13:33:07 - 01:13:50:03 Dr. Sarah Gardner Yoga is one of those things that I can do even on those days where I'm like, I don't want to, I don't want to move. I'm tired. I can get down in cash cow and move my body, stretch my legs out in a downward facing dog. Other things you can incorporate or dance, just turn some music on and like be silly for 10 minutes with your kids.   01:13:50:03 - 01:14:13:14 Dr. Sarah Gardner Whatever. Just get your heart rate up, move your body, just make it enjoyable and again, you can switch it up as much as you need to. And then when you start to feel like you want to go back to the forms of exercise that you're most familiar with, that's a good time to transition back in. I also think that there, you know, whether it's spoken or not, coming from a running background, when you're not running, I feel shame and guilt when I'm not running.   01:14:13:14 - 01:14:29:13 Dr. Sarah Gardner And I also feel shame and guilt when I don't want to run. So trying to be aware that those feelings probably come up for some of us and then just, you know, talking ourselves through it like you've nothing to be guilty about. You have a crazy week right now. You will go back to it. You're just taking a day.   01:14:29:13 - 01:14:33:06 Dr. Sarah Gardner You're not quitting the sport. You're taking a day. You know.   01:14:33:08 - 01:14:58:15 Erin Croyle I do. And I'm so glad you said that because I know in my personal experience and then I know a lot of the caregivers in my life where you feel like you're in a rhythm and then your child has to have surgery or someone's sick, or if you're seeing specialist, it's 4 hours in a car one day. Not only are you not doing the exercise, you need to you don't want to drink the water because you're going to have to pee in the car.   01:14:58:17 - 01:15:17:20 Erin Croyle So it just falls apart. And then, you know, we all have our own stuff. For me personally, I have ADHD, which comes with this all or nothing mindset. And so I know some of the things that I do, like if my son's in the hospital or we have to travel for a thing, doctors, I'll take a kettlebell and make sure I keep doing workouts or a yoga mat.   01:15:17:24 - 01:15:33:10 Erin Croyle What are some ways for people who life just gets in the way so often and so often breaks up a routine? What are some simple recommendations you can give to just make sure you stick with some sort of movement?   01:15:33:12 - 01:15:57:13 Dr. Sarah Gardner I think the big thing is, well, it's actually people who end up traveling maybe just keep a set of weights in the car, keep a yoga mat in the car with you obviously don't want to keep plastic water bottles in a hot car, but have some sort of hydration ready to go so that when you do find yourself a pair of running shoes would be another good example, just so that when you do find yourself having a spare hour, which like how nice does that sound?   01:15:57:15 - 01:16:20:06 Dr. Sarah Gardner You're not kicking yourself for not having if you're always leaving. I have like a yoga mat at my office. So if I have a patient that cancels and I can squeeze in some yoga during the day and I don't have to disrupt my kids schedule later, awesome. I'll just try to squeeze it in when I can. But I think being prepared that you might have the opportunity, then when the opportunity arises, you're ready and you can you can actually use that time.   01:16:20:08 - 01:16:35:06 Erin Croyle Yeah. And it's funny because you mentioned shame and guilt and I learned a long time ago to let go of any shame or embarrassment. I feel for like doing a kettlebell workout or doing pushups in a waiting room. Like, I just Yeah, do your squats wherever you do them.   01:16:35:08 - 01:16:36:09 Dr. Sarah Gardner Right? Exactly.   01:16:36:15 - 01:17:02:22 Erin Croyle Yeah. So there are a lot of physical demands that come with caregiving and lifting someone who weighs as much or more than you changing clothes on someone who can't do it themselves. The bathing, I mean the putting on shoes when your back is tweaking, there's gear, there can be wheelchairs. Are there specific movements or routines that caregivers who have these additional physical demands on their bodies should be focusing on?   01:17:02:22 - 01:17:19:00 Erin Croyle And also, you know, for parent caregivers, where our children start to get bigger and stronger as we get older, I mean, I can pick my son up now at 46, but what's that going to look like in my sixties and seventies? What should we specifically be thinking about?   01:17:19:02 - 01:17:42:20 Dr. Sarah Gardner Again, no one system or one exercise is going to be right for everybody. But I do think that the one thing everybody needs to be incorporating, especially people in these roles, are core stability and flexibility. And these are going to be the two biggest players in longevity and injury prevention core. A lot of times people think about ABS, but we're also talking about the transverse abdominals, which helps stabilize their pelvic floor.   01:17:43:01 - 01:18:06:00 Dr. Sarah Gardner We're also talking about our lower back muscles and our pelvis and our glutes, everything that's going to give you a nice, strong foundation so that when you do have to lift someone or something heavy, you have preparedness there and then flexibility. This it's kind of on the same idea. If you have a lot of rigidity in your muscles and you find yourself having to bend in two funky positions, you're far more likely to tweak something or injure yourself.   01:18:06:05 - 01:18:24:04 Dr. Sarah Gardner So I think those are the two main things. And again, there's a lot of different ways to strengthen those areas and to stretch those areas. But as long as you're incorporating some core and some flexibility into the workout of your choice, I think that's going to be really helpful. The other thing I would recommend is working with your child or your elderly relatives.   01:18:24:06 - 01:18:46:03 Dr. Sarah Gardner Occupational therapist, whether it's the in-school occupational therapist or it's somebody that they could point you in the direction of, You can have an occupational therapist sort of coach you on lifting technique and, you know, ergonomically advantageous ways to accomplish the things that you need to accomplish without putting yourself in positions that are going to compromise your health and safety.   01:18:46:07 - 01:19:13:18 Dr. Sarah Gardner And that's true for any profession. I know that when I was in chiropractic school they would really harp on us for the way we needed over the table and the way we used our hands. Because if you enter yourself, you're out of a job right? So your ergonomics can be incredibly important. And then the other thing I would say is, and I think occupational therapists do this as well, some will do at home visits and kind of look at your space and they can help you make recommendations to minimize fall risk for people with mobility issues.   01:19:13:18 - 01:19:31:19 Dr. Sarah Gardner But also look at the arrangement of furniture so that you're minimizing the amount of like bending and twisting you're doing or having the scooch behind equipment when you could have it set up in a way that's maybe not as esthetically pleasing, but a little bit more sustainable in terms of you having to work around a larger child or a larger patient.   01:19:31:21 - 01:19:51:22 Erin Croyle I never thought about that. That's brilliant. It's interesting because I don't think parents think about this, but when you're in early intervention, so children up until age three, a lot of times you do have occupational therapists and physical therapists coming into the home. Yeah, So what a great idea to already consider that when they're younger, when you already have someone.   01:19:51:22 - 01:19:54:23 Erin Croyle I love that you suggested that.   01:19:55:00 - 01:20:15:06 Dr. Sarah Gardner Yeah. And I also think like, you know, the more you practice, if they can look at your lifting technique, the way that you lift somebody has probably changed already. The way you lift. Our love has probably changed already. And so just checking in and making sure that your technique is safe, the more you practice that safe technique, the more second nature it's going to become as you age and as he ages and gets larger.   01:20:15:08 - 01:20:25:23 Dr. Sarah Gardner So it's good to just check in with somebody every once in a while and just like make sure there's nowhere that you could improve or tweak or use a tool or a bolster, just things like that as as things change.   01:20:26:00 - 01:20:42:01 Erin Croyle Yeah, I love that. Let's talk about nutrition. Yeah, We always see headlines about ultra processed foods and preserved foods and all of this. How much of a difference does it really make in what you eat versus how you feel?   01:20:42:03 - 01:21:04:16 Dr. Sarah Gardner my gosh. I think it might be the biggest the biggest tool we have in terms of controlling the way that we feel. That's something that my husband, as you mentioned, was a CrossFit coach, and he and I would talk about some of his client outcomes and even the people who were extremely diligent about their exercises and showed up and did the work, it's when they didn't have their nutrition nailed down that they would fall short of their goals.   01:21:04:21 - 01:21:25:06 Dr. Sarah Gardner And I think it's another paradigm shift. The way that we look at food has to evolve. If we stop viewing it as a way to control and manipulate weight or to punish ourselves and we start considering it as fuel and a way to recover our muscles and to build strength, I think that's when we start to fall into healthier patterns with it.   01:21:25:10 - 01:21:41:14 Dr. Sarah Gardner It takes practice, though, and you know, I come from a disordered eating background. I'm in a way better place with food now, but I think a lot of us do fall into those patterns of like, God, I ate McDonald's on the road. Now I need to punish myself by not eating or by eating a salad or just not getting enough calories the next day.   01:21:41:17 - 01:22:08:02 Dr. Sarah Gardner I think that another thing that people fall into is just not eating when they get busy, which is the worst thing you can do as a care provider because you can't. Or from an ending up. The way that I look at it is focusing on clean, nutrient dense foods that gives you real energy to burn it. When I say real, what I mean is like, okay, so I more often than not, I'm relying on an iced oat milk latte to get me through my morning.   01:22:08:04 - 01:22:32:15 Dr. Sarah Gardner And a lot of times I'm grabbing a scone one of their and don't get me wrong, it's delicious and I will continue to do this. But I do notice that on those mornings my energy steeply drops off by ten. I mean, like it's just not. It's high glycemic index. It's high processed carbs and sugar and it sustains me for 14 seconds and then it's done where if I made a piece of toast, put some peanut butter on it and a banana, is it ideal?   01:22:32:15 - 01:22:50:12 Dr. Sarah Gardner No, but we've got some nice unrefined grains. We've got some peanut butter which has the fat and the protein, and you can use almond butter whatever you want. And then we have the banana, which has fiber. It's got a little bit of natural sugar and it's going to give me energy that might actually last through the morning. And again, it's not we're not looking for perfection.   01:22:50:12 - 01:22:58:13 Dr. Sarah Gardner We're looking for something consistently and we're looking for progress for lunch, for example. I'm not a meal. Are you a meal, Prepper?   01:22:58:17 - 01:23:00:11 Erin Croyle No, I wish I was. I can't do it.   01:23:00:12 - 01:23:12:14 Dr. Sarah Gardner No, I know. Same. That's how I feel too. You know, you see these people on Instagram with these beautiful, like, great little dishes all in a row with their chicken meals for the whole week. I can't do it. I kind of. I like it. I get.   01:23:12:14 - 01:23:12:23 Erin Croyle Sick of.   01:23:12:23 - 01:23:33:19 Dr. Sarah Gardner It. Well, not only do I get sick of it, I'm not going to spend my Sunday doing it. You know, It's like that's it. Downtime is incredibly precious, especially when you have kids or you're caring for somebody. And so I well, I'll tell you what I brought for lunch today. I brought lettuce, meat, turkey, cheese slices and some almond flour crackers.   01:23:33:21 - 01:23:51:18 Dr. Sarah Gardner I didn't put them in like a cute bento box or anything. I put them in a target bag and then I made myself like a poor man charcuterie board for lunch. And it's not pretty, but I didn't have to spend the 10 minutes to make a sandwich, which I'm sorry. I just don't have it in the morning. And maybe you don't either, but I still got my protein.   01:23:51:18 - 01:24:09:12 Dr. Sarah Gardner I still got some dairy and calcium, which has the fat in it as well. I still got a little bit of eggs with the greens and then I got some greens and protein with the almond flour crackers. So I was hitting all my basses. It's better than just like being overly starving when I get home and eating a bag of chips, which I absolutely do.   01:24:09:12 - 01:24:23:13 Dr. Sarah Gardner When I skip the meal. Now I think another really good supplement here would be like a premade protein shake. I'm definitely guilty of buying the powder and then having it sit there because I'm not going to take the 5 seconds to put it in the shaker bottle.   01:24:23:17 - 01:24:32:23 Erin Croyle I'm literally holding on to my protein shake, which I was going to ask because I feel it's part of the Ph.D., it's part of being a mom and a caregiver.   01:24:33:00 - 01:24:33:15 Dr. Sarah Gardner Yes.   01:24:33:15 - 01:24:35:02 Erin Croyle So this is okay.   01:24:35:04 - 01:24:58:17 Dr. Sarah Gardner I think those are your. my God. Yes, absolutely. I do. The pre premade ones. I wish I could say that I was going to sit at my blender every morning and put like fruit and everything in there and make it this beautiful smoothie. I'm not. And while they're a little bit more expensive to buy them ready made, it's more value than if you're just going to have that powder that's going to sit in your closet and go bad and you're not going to use it.   01:24:58:19 - 01:25:24:01 Dr. Sarah Gardner So I think, yeah, supplementing with a protein shake is genius. Have them places, have some in your car, have some at work, just have them in your fridge ready to go. And even when you don't feel like eating, just have one of those. It's better than nothing. Right? It's the same thing as with the exercise. Be realistic about the time that you have to commit to meals and don't go to the grocery store with this fantasy of these beautiful, like three course lunches that you're going to have.   01:25:24:01 - 01:25:30:05 Dr. Sarah Gardner It's not going to happen. Pick things that you can do and stick with it. I think that's the key with nutrition.   01:25:30:07 - 01:25:48:22 Erin Croyle It's refreshing to hear, too, because as a journalist, I'm always reading, you know, we shouldn't eat processed foods, we shouldn't eat lunchmeat. Well, you know, I'd love to grill a bunch of chicken every week to throw on a salad, but I don't have time. So. Right. We're not going to die. Yes. We have lunch meat sometimes, right? We're better off eating now.   01:25:49:00 - 01:26:08:11 Dr. Sarah Gardner You're not going to die. I feel like that's exactly, exactly where another really good one is. Like canned tuna for protein. You can even get little if you're not a person that consumes me. A little nut butter packets, just things like that. There are tofu. There's a lot of options that you have to make. Quick, easy. I can literally put all of this in a bag for the bag in the fridge.   01:26:08:11 - 01:26:11:03 Dr. Sarah Gardner It will work. It doesn't have to be a whole ordeal.   01:26:11:05 - 01:26:36:22 Erin Croyle Yeah, that's refreshing to hear. What about the comfort food factor? Yeah, like you said, a lot of times, if you don't eat, you get home and you just have chips and we all do that. But yeah, how detrimental is that comfort food if you're eating a cookie every day or, you know, we keep hearing about how bad sugar is for us, what is the balance, how do we know what's too much and what's.   01:26:36:24 - 01:26:56:05 Dr. Sarah Gardner You know, like if if every meal that you're eating is like that, if every meal is a cookie or you're skipping meals, that now we have a problem. But I'm a big fan of like little treat culture. I love that. That's career preference right now. It's okay to reward yourself with it. And also, you know, like thinking about food as a reward disordered plot right off the bat.   01:26:56:07 - 01:27:23:14 Dr. Sarah Gardner Like, I recognize it, but it's okay. It's fine. And sometimes you do need a little bit of sugar to give you a bit of a boost because you don't have time to sit down and have a turkey sandwich. You know, I don't think there's anything wrong with that. I think the line is crossed when everything you're eating is processed or everything you're having is high in sugar, or when you get that coffee, it's like a whipped cream, high sugar, like lots of syrupy kind of stuff like that candy bar.   01:27:23:14 - 01:27:23:19 Erin Croyle In a.   01:27:23:19 - 01:27:43:21 Dr. Sarah Gardner Cup. Yeah, exactly. That's the perfect description. But if you're having, like, a latte and have a cookie, it's great. Enjoy. You know, like, I do that every day, it's. But then the rest of my meals, I try to make them at least calorie dense enough that it's going to carry me through. I think portion control is huge, but also having the expectation that you're not you're going to cut out sugar completely.   01:27:43:21 - 01:27:53:08 Dr. Sarah Gardner It's unrealistic when you feel like you're depriving yourself. That's when you're going to crave those things more than if you were to just have a cookie a day. Be like, yeah, I had my sweet thing, I'm good.   01:27:53:10 - 01:28:12:07 Erin Croyle Well, that brings us to hydration. And I think you and I are both guilty of drinking so much coffee that we shake. Okay, I'm not great at water. You are much better at water. Where does water fit into this? How important is it? Do you get enough through food? Should we be chugging a certain amount? Does it really make you feel that much better?   01:28:12:07 - 01:28:12:23 Erin Croyle Tell me about.   01:28:12:23 - 01:28:39:06 Dr. Sarah Gardner Water. Yeah, we definitely need to be drinking water. And like you said, I used to make this joke in graduate school where I was drinking so much coffee, I was no longer peeing. I was considering it excreting at that point because it was just just me, straight myself, past the point of recognition. But yeah, on average I would say you want to shoot for about three liters a day, which are three of those like pulling spring size bottles, which is attainable.   01:28:39:06 - 01:29:02:06 Dr. Sarah Gardner But that's also going to vary depending on, you know, with body size a little bit are you pregnant? Are you nursing? Are you on a medication that's a diuretic and causing you to go to the bathroom more? Everybody is slightly different, but I would say in general, we need to be drinking at least three liters a day. And the reason is because almost every single metabolic process you have in your body requires water to happen.   01:29:02:08 - 01:29:31:10 Dr. Sarah Gardner We're talking digestion, we're talking cell regeneration, muscle building, muscle recovery function. All of it requires water. So when you start to step the water back, you might not notice big symptoms at first, but you're going to experience things like brain fog and maybe your stomach is feeling a little crafty. Or maybe you notice that you are having trouble thermo regulating and all these weird different doctor's office settings that you're having to sit in because you're not sweating appropriately.   01:29:31:10 - 01:29:51:07 Dr. Sarah Gardner Every system has a place where water fits a very important role. So it's it's really not something you can skip on. As much as I would love to drink coffee all day long if I was going to get different food. There are sources of food that contain some water, but unless you're eating like four watermelons a day and even that I don't think is going to cut the mustard.   01:29:51:12 - 01:30:17:08 Dr. Sarah Gardner You definitely need to be drinking it on its own. Then one thing I would add to that is I think considering adding an electrolyte supplement to at least one of your water bottles a day, adding nutrients like magnesium, potassium, sodium is also going to really aid in muscle function and muscle recovery, which when we're talking about the sustainability of our muscles over the years, I think that's really going to help you kind of keep up with the demands that you have on your body.   01:30:17:12 - 01:30:38:00 Dr. Sarah Gardner I really like element. It's LMNT. It's a little higher in the sodium. I love it because I tend towards low, low blood pressure or prostatic hypertension, so I get dizzy when I don't have enough salt. And so for me, that's perfect. I feel like it really gives me a little bit of a boost in it. I have less of that lightheaded, dizzy sensation.   01:30:38:02 - 01:30:46:06 Dr. Sarah Gardner Some people can't tolerate the salt taste for them. I would recommend something like a liquid I.V. It's got all the important stuff in it. It's just a little easier to get down.   01:30:46:08 - 01:30:54:16 Erin Croyle Some people don't like the taste of just plain water, so finding an electrolyte supplement is helpful. What about Bubbly water? Seltzers   01:30:54:21 - 01:31:18:18 Dr. Sarah Gardner Yeah, absolutely. I think there's probably a point of diminishing return that I remember. I am. I can tell that anecdote. My husband will kill me. But I think that I think there's some, if I remember correctly, sometimes carbonation can be a little rough for your decision or your teeth. I think that obviously, like, you know, consuming too much carbonated stuff is going to make you a little bloated and maybe you don't feel super great.   01:31:18:18 - 01:31:37:22 Dr. Sarah Gardner But yeah, add in a little bit of bubbly water just to switch it up a little bit. Try to steer clear of the ones that have added sugar. But other than that, yeah, no, I think seltzer is a great alternative. The big one you want to steer clear of is soda. Unfortunately, also juice, if it's not fresh pressed or if there's added sugar, really not great for you.   01:31:37:24 - 01:31:58:03 Dr. Sarah Gardner Even the juices that you're making yourself are very high in sugar. If you're using that as part of a balanced diet or just a way to get additional nutrients, that's okay. But even sugar from fruit is processed in your body the way sugar is. So try to stay away from beverages that have a lot of added sugars, but you can definitely switch it up with things like seltzer.   01:31:58:03 - 01:32:00:04 Dr. Sarah Gardner I think that's a really good option.   01:32:00:06 - 01:32:20:23 Erin Croyle What about that other stuff that we hear about so often, like those easy fixes? A friend of mine was just swearing by a castor oil wrap that got rid of pain. And I'm like, Ooh, I almost bought it. And then of course, there's all these supplements out there which can be scary if you don't have low levels of some like vitamin B, Should you really be taking it?   01:32:21:00 - 01:32:29:01 Erin Croyle Are there simple things we can do or buy that might make some sort of tangible difference?   01:32:29:03 - 01:32:49:12 Dr. Sarah Gardner Yeah, no, it's so one thing we did talk about in school is that if somebody says they have a system or a product that's going to take away all your issues, they're probably lying. And to really be wary of that sort of thing in terms of the things I take, I take a probiotic, I take collagen and I take an anti depressants.   01:32:49:12 - 01:33:11:14 Dr. Sarah Gardner I'm pretty minimalist with supplementation and medication. And as far as supplements that you can buy at the store, a lot of that like, yes, it is scary that people might be taking things that they don't need, but a lot of them are so poor in quality that you're just peeing without any. So honestly, and I hate to say it as a person who's the this industry, a lot of it's a total waste of money.   01:33:11:15 - 01:33:35:21 Dr. Sarah Gardner You know, I think that if you are able to get stuff from a reputable source and it's been recommended to you because you are deficient, that's one thing that's going to be different for everybody. And I don't think that having a friend who did well with something doesn't necessarily mean that you'll do well with it, too. There are good products out there, but I think it's it's far easier to rely on your nutrition to get a lot of those nutrients.   01:33:35:23 - 01:34:00:14 Dr. Sarah Gardner And that's another good place that protein shakes will fall to because a lot of them do have some micronutrients there that maybe you're missing with your your day to day food, you know, things that I would generally recommend to everybody are heating pad for when you inevitably tweak a sore muscle Epsom salt you can do an Epsom salt soak in emotional support coffee you know I think sometimes that can be a very, very powerful tool.   01:34:00:14 - 01:34:20:15 Dr. Sarah Gardner I love little treat culture, but I don't think that it's worth spending money on these crazy supplements that promise to do these cool things or like castor oil wraps can be really good for an acute knee injury. It's not necessarily something you need to have in your medicine cabinet all the time. I would say save your money and just kind of like revel in that financial security.   01:34:20:19 - 01:34:42:15 Dr. Sarah Gardner Yeah, right. In 2024 or save up. And when the stars align, get yourself a massage. Obviously not realistic all the time, but stick to the things that you know will work for you and don't be looking outside of yourself for the thing that's going to work. You have all the tools. It's just a matter of using them appropriately and actually spending the time in caring for yourself.   01:34:42:17 - 01:35:07:22 Erin Croyle Yeah, And actually, speaking of that, we haven't even talked about chiropractic care. Sure. Achy back, a lot of pains are I'm sure are stress related because the world is on your shoulders. You carry it. Great. How much do you recommend someone go like you're your back doesn't have to go out to see a chiropractor. What sort of things can a chiropractor or you know, not Western medicine do for people?   01:35:07:24 - 01:35:29:04 Dr. Sarah Gardner my gosh, they all sorts of things. At my practice. As you mentioned before, we have chiropractic, we have acupuncture and massage and a lot of what we do is proactive care. So sort of keeping the body in healthy alignment and in pretty good homeostasis so that you're less likely to have a major blowout. And certainly we have people who come in after they've had a big problem too.   01:35:29:04 - 01:35:53:13 Dr. Sarah Gardner But probably the biggest area that I work on are people's pelvic bones or their their pelvic area. And so in chiropractic, we consider the pelvis sort of the foundation for healthy movement, because it's these huge bones that attach to the bottom of your spine, to your hips, right? So when you have a problem with one of those bones, you're going to have big issues and we're going to have a lot of pain and we're going to have limited mobility, etc., etc..   01:35:53:19 - 01:36:11:07 Dr. Sarah Gardner So one of the things I do with every single patient who walks in is I look and make sure that their hips are in alignment so their that one isn't higher than the other and that you have equal movement from side to side and finding little imbalances before they become a problem. And correcting them can really help prevent injury.   01:36:11:07 - 01:36:32:17 Dr. Sarah Gardner When you're doing something like yes, moving somebody, but let's say your child slips and falls, you're not expecting it and you go to catch them. And if you had a little imbalance, that suddenly becomes a huge imbalance and now you're symptomatic. So keeping people's bodies prepared for what they can't be prepared for is a big focus that I have at my office.   01:36:32:19 - 01:36:50:11 Dr. Sarah Gardner But like you said, outside of the demands of caregiving, we all have body demands driving, sitting at a desk, reading, writing, all of these things can cause stress throughout the spine and through the shoulders, through the arms and legs. So basically, when I have a person come in and you can speak to this is, all right, what's going on?   01:36:50:13 - 01:37:06:03 Dr. Sarah Gardner Like, what are we working out today? Is there a particular area of or do we just kind of want to to you up and make sure we're good to go? And that's different for everybody every time. So, yeah, it really depends on the patient's needs. But I would absolutely say you don't have to be injured to come to an office like this.   01:37:06:03 - 01:37:21:04 Dr. Sarah Gardner You can use it as wellness care. It can be a little treat, it can be just a feel good thing, but also use tools like this to make sure that you're able to healthily show up for your loved ones and for yourself rather than waiting until you have a big problem.   01:37:21:06 - 01:37:44:10 Erin Croyle That is exactly what I found is that I see like my stuff is involved, I guess, but not. It's weird. Like I feel healthy, but basically I'm achy all the time, right? I'm 46 here for three kids. I'm caring for a dog that's dying. You know, it's just constant. she can hear you and well, she's losing her hearing.   01:37:44:12 - 01:37:46:09 Dr. Sarah Gardner Okay. Right.   01:37:46:11 - 01:37:46:24 Erin Croyle She's just like.   01:37:47:04 - 01:37:47:10 Dr. Sarah Gardner A.   01:37:47:12 - 01:38:14:08 Erin Croyle The to me, seeing you, seeing a chiropractor is self-care. And those well visits like making sure I get my mammogram and my dental appointments and all those things. You know, when we talk about self-care, it's not about a manicure. It's not about getting Botox. This is about feeling good and living a life where you can actually move and feel good for as long as possible.   01:38:14:10 - 01:38:41:21 Dr. Sarah Gardner Yeah. And yes, absolutely. And I so there was a quote I just remember that kind of pertains to this. And it's pain is not a lifestyle. And I do think that in caregiving positions and I mean just not even just with caregiving like the hustle culture we live in, right? Sometimes we like wear this pain as a badge of honor, like I'm so tough and I'm so resilient and I'm pushing through it and I'm not taking time to take care of myself as if that equates to like toughness and success.   01:38:41:23 - 01:39:16:13 Dr. Sarah Gardner That's a very limiting it's a very limiting way to live your life. It's okay to need help. It's okay to spend money on yourself to get the care that you need. I think again, just the way we're raised, there's guilt with taking time and space for yourself. Yeah, you know what I mean? Yeah. So I think again, just trying to find areas where maybe we have these self-limiting beliefs about what's appropriate to do for ourselves and what's okay and just making more space for you to exist.   01:39:16:15 - 01:39:47:10 Dr. Sarah Gardner You know, you make space for everybody else to exist, the people you're caring for, and then we're the people that get the short end of the stick. Yeah. And it's okay to want to do those things for yourself. And that said, the Botox, the mayonnaise, the whatever, do it. If it makes you feel good, right? What you do, even if it's like silly things, if that brings you joy and it just gives you a little bit of like, okay, I feel like me again, That's totally okay to just make sure you're also doing the foundational things like eating, drinking, moving, sleeping that are going to really debut.   01:39:47:12 - 01:40:05:21 Erin Croyle Yeah. And I find that myself and the caregivers, I know you have to really remind yourself to do those things. It is, yeah, added effort. And unfortunately, sometimes what I have to tell myself to do them is that I am actually doing this for other people because if I don't maintain my health, I can't take care of them.   01:40:05:21 - 01:40:09:04 Erin Croyle And sometimes that's the only logic that works for me.   01:40:09:06 - 01:40:15:00 Dr. Sarah Gardner Sure. Yeah. You know, you can't poor from an empty cup. And if you have to trick yourself into that.   01:40:15:02 - 01:40:15:24 Erin Croyle I think it's.   01:40:15:24 - 01:40:44:11 Dr. Sarah Gardner Okay. I just, you know, with the recognition that I matter to you and yeah it's I do think that we sometimes get really pulled down into our identity as a caregiver. And it's not always voluntary, you know, it just volunteers are the right word. It's not always a conscious decision. It's just your life becomes so wrapped up and involved in these appointments and these meetings and everything that you truly do tend to lose yourself a little bit.   01:40:44:13 - 01:41:04:07 Dr. Sarah Gardner I know that I turn to ultrarunning after I had my son because I wanted to feel like myself again, and it's almost like I had something to prove. I'm not sure to, I guess me that, you know, I still had value. I still had some of those things I had before I had kids because society's really ready to tell you who you are once you become a caregiver.   01:41:04:09 - 01:41:07:18 Dr. Sarah Gardner So it's nice to remind yourself, you know.   01:41:07:20 - 01:41:10:05 Erin Croyle Yeah. And especially as a female, right?   01:41:10:10 - 01:41:12:18 Dr. Sarah Gardner my God, yes. I like that.   01:41:12:18 - 01:41:37:08 Erin Croyle Kind of gender inclusive. But, you know, the primary caregiver, you just fall into this role and sometimes it's like falling on a sword. But it's societal, too. It's really it's interesting And it's interesting. You said I didn't realize you got into the ultra after your son because part of the reason I know that I used to want to train for races is to have that time to myself.   01:41:37:08 - 01:41:38:03 Erin Croyle Like I have.   01:41:38:03 - 01:41:38:18 Dr. Sarah Gardner To. Yeah.   01:41:38:18 - 01:41:46:17 Erin Croyle And to force me to leave. Right. Which to force me to leave because otherwise I would fail at this race. So I had to go and run for 3 hours, right.   01:41:46:19 - 01:42:10:22 Dr. Sarah Gardner Yeah, yeah, yeah. I think a big thing too is just kind of recognizing what your why is and is your why coming from a good place or is it coming from a place of self punishment or some expectation that you had of yourself in the past that maybe is no longer serving you? And I think we kind of touched on that a little bit when I was talking about how, you know, I was trying to force myself to run.   01:42:10:24 - 01:42:27:09 Dr. Sarah Gardner And I had this realization during the race where I was like, I was really struggling. I was having some stomach issues during the race and I was like, why am I doing that? Yes, Yes, I enjoy running. Yes, I enjoy training. But I had COVID. I knew I had COVID when I started the race. I couldn't let go of the fact that I had trained for nine months.   01:42:27:15 - 01:42:43:03 Dr. Sarah Gardner I was like, I'm not not doing this. I have to do it. And then I realized that was it coming from a place of self-love, that was coming from a place of, well, I have to prove that I can still do it. I have to prove that I'm still good enough. Again, I don't know who I was trying to prove it to because everybody was like, You're being stupid.   01:42:43:05 - 01:43:03:15 Dr. Sarah Gardner But that really did make me take pause and think like, why am I doing right? What is my motivation for this? Is it something like undying need to be skinny still? Is it some undying need to like, Well, if I'm if I'm not doing the most, I'm nothing. What is it? Right. So it's like that made me pause and reexamine.   01:43:03:15 - 01:43:24:21 Dr. Sarah Gardner Like, why are you exercising? And if it's to punish yourself, we need to reframe that quickly, because that can very quickly become this, like, toxic relationship with exercise, which is like probably more than we needed to get into with this podcast. But I do think that that's an issue that women struggle with is like, Ah, am I exercising because I want to stay healthy or do I have these voices in the back of my head saying I'm not good enough?   01:43:24:23 - 01:43:33:04 Dr. Sarah Gardner And it just becomes more and more complicated when you have people that you're caring for in the max. It's like hard enough as a single person to mitigate those issues.   01:43:33:04 - 01:43:47:24 Erin Croyle But I'm actually glad you said all that because all the ready, I'm like, All right, we need to do a follow up podcast and just talk about people's expectations. I mean, so much of what I think women do and men are falling into this trap as well is just for appearance. yeah, instead of just for their health.   01:43:48:04 - 01:44:07:05 Erin Croyle But that is another podcast. Yeah, I do have one more question. I think, you know, easy to talk about all this and feel excited and it doesn't sound like it's that hard right to do a couple of minutes here and to just eat clean. Right? But I know when I go home and I actually try to do it it's never is easy as I think it's going to be.   01:44:07:05 - 01:44:26:00 Erin Croyle So what should people do, you know what do you say to people who haven't had a solid night's sleep in literally years because there's a shortages and they can't find a night nurse or people who are always on the go and there's an IEP meeting or a doctor's appointment and then they have to work at night to catch up on their day job.   01:44:26:02 - 01:44:33:00 Erin Croyle What are some basic things to do to stay functional if you can't even find 10 minutes? Like is it standing at your desk? What can we.   01:44:33:00 - 01:44:52:03 Dr. Sarah Gardner Do? I mean, I think the biggest thing is practicing grace with yourself. And it is a practice because it's not easy. I think that we immediately go into that guilt cycle right? But you need to practice as much grace with yourself as you do with the person that you're caring for, not only because you deserve it, but also because it's unrealistic to have any other expectation for yourself.   01:44:52:05 - 01:45:14:04 Dr. Sarah Gardner And one thing I do find really helpful is to Sunday spend 20 minutes looking at all of the appointments I have throughout the week, different meetings, different things at the school, and look for spaces where we can schedule some exercise. Flying by the seat of your pants might seem like a good idea, but realistically, if you don't plan it, especially with kids, something you're caring with, it's going to happen.   01:45:14:06 - 01:45:41:17 Dr. Sarah Gardner So look and set aside that time for yourself so that it's written out on your calendar as one of those things you have to do. That said, if something comes up and you can't do it, it's not the end of the world. Don't punish yourself. See if you can maybe shift it, like move it to a different day, pivot and you don't need to plan meals, but you know, make a plan about what types of foods you're going to bring with you to have ready for you realistic plans, of course, and just kind of commit to that, at least for yourself.   01:45:41:22 - 01:45:58:03 Dr. Sarah Gardner I think the biggest things are going to be rest food and a little bit of movement. And that comes in all shapes and sizes. And one day is better than zero days. Every little bit helps. So even if you have a week where you're not able to do a lot, just have enough respect for yourself to not punish yourself.   01:45:58:05 - 01:46:02:02 Erin Croyle I love it. And then I like I do have one last question.   01:46:02:04 - 01:46:03:01 Dr. Sarah Gardner Sure.   01:46:03:03 - 01:46:24:07 Erin Croyle I'll be putting some stuff in the show notes for folks recommendation like the hydration and whatnot. Yeah, you know, you say movement and you talked about some of the yoga poses. Do you have any recommendations for places where people can find certain poses? So They don't know yoga or they don't know certain moves? yeah, Yeah.   01:46:24:09 - 01:46:45:03 Dr. Sarah Gardner So I love I meant to mention this earlier. There's a lot of apps that you can use so that you can exercise in your bed. You know, you don't actually physically have to get to a gym. I know that's a very limiting factor for me because I just. I cannot find the time. Yeah, I like to do lot of my exercises at home because a limiting factor for me is actually physically getting to a gym.   01:46:45:03 - 01:47:16:07 Dr. Sarah Gardner It's just not going to happen. The app that I love the absolute most is a slow moves and I can send you that link, Erin so you can put it in the show notes. I want to say that the price is about $200 for the year, which if you think about a monthly membership, like it kind of hurts upfront, but you'd be paying ten times that much for some gyms and they have Pilates bar, yoga, hip classes, interval classes like cycling suggestions and running suggestions.   01:47:16:12 - 01:47:36:08 Dr. Sarah Gardner They have everything. And I know there's a lot of apps out there like that, like the Peloton app has some great classes, look online and see if you can't find some studio style classes that you can do from anywhere. I think that's a hugely helpful tool and it's one of those things from COVID that I'm so glad it came about.   01:47:36:08 - 01:47:42:12 Dr. Sarah Gardner Right. It's just everything is a lot more accessible from anywhere. Yeah. Yes. Is, is just super important.   01:47:42:14 - 01:47:48:13 Erin Croyle Yeah. And I do know to for folks on a budget where 200 bucks is like too much.   01:47:48:15 - 01:48:12:01 Dr. Sarah Gardner YouTube YouTube that YouTube. yeah. Big time. So much There's so much out there that said there's some crap there. Yeah, so be it. Be a intelligent consumer but yeah I think there's a I've done 50 videos off of YouTube and been totally satisfied with all of them. So yeah, you can very much find cost effective ways to get those classes.   01:48:12:03 - 01:48:17:03 Erin Croyle Yeah. And like you said before, if you hate it, then stop it and find you like it.   01:48:17:04 - 01:48:27:04 Dr. Sarah Gardner Like totally, you know, and there's probably stuff we haven't even mentioned out there, you know, like there's literally something for everybody by, you know, cosmic kids, yoga.   01:48:27:06 - 01:48:28:07 Erin Croyle I've heard of it.   01:48:28:09 - 01:49:01:04 Dr. Sarah Gardner It's it's I'm not going to call her insufferable on air. If this woman who does themed yoga classes for children where you're like, going through these yoga poses and she's she's narrating get to the story of Frozen so she'll rename a pose to hold the interest of the child. And there's classes like that for adults, too, where if you're super into, you know, this is a weird example, but like the people who do like live action roleplaying like their yoga class incorporate things like that to keep it interesting for you.   01:49:01:06 - 01:49:07:13 Dr. Sarah Gardner So just because you haven't found a thing that you love yet doesn't mean it's not out there. Just keep looking. Because there is. There's a lot of good fits.   01:49:07:15 - 01:49:13:06 Erin Croyle That's hilarious. I'm like thinking like, my kids would marvel. I bet there's some marvel weird cosmic you dress.   01:49:13:08 - 01:49:22:08 Dr. Sarah Gardner So there's like, yeah, yeah. There's like, I know the Cosmic kids Lady has like a Lego movie. Yoga. Like to have everything. Deb Everything.   01:49:22:14 - 01:49:23:04 Erin Croyle my gosh.   01:49:23:04 - 01:49:24:21 Dr. Sarah Gardner That's yeah, good to know.   01:49:24:21 - 01:49:30:12 Erin Croyle I guess they got a lot of parents listening and yeah, annoying for grown ups, but great for kids.   01:49:30:15 - 01:49:34:19 Dr. Sarah Gardner Yes, but it occupies them for 20 minutes at a time, which is beautiful.   01:49:34:21 - 01:49:36:20 Erin Croyle And hopefully they're moving and not just what.   01:49:36:20 - 01:49:39:13 Dr. Sarah Gardner Exactly, Exactly.   01:49:39:15 - 01:49:44:09 Erin Croyle my gosh, I cannot thank you enough. Is there anything else that we didn't touch on that you want to talk about?   01:49:44:11 - 01:49:48:16 Dr. Sarah Gardner No, I don't think so. This is really fun. Thanks for having me on the chat.   01:49:48:18 - 01:49:50:12 Erin Croyle Are you kidding? We'll have to do it again.   01:49:50:14 - 01:49:57:20 Dr. Sarah Gardner Yeah, definitely.   01:49:57:22 - 01:50:20:23 Erin Croyle And thank you listeners for joining us. We're so excited for what's ahead for season two. Some topics we're going to cover in the coming months. The complexity of proper nutrition for children with disabilities, searching for meaningful employment and so much more. Please rate review and share this podcast of ours and tell us what you want to hear about.   01:50:21:00 - 01:50:27:12 Erin Croyle This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.        

This odyssey of parenting, caregiving, and disability can be so many things: isolating, overwhelming, joyous, lonely, full, exhausting, exhilerating. The extreme ups and downs; the highs and lows. You can't fully understand it unless you live it.  This episode explores why professional family to family support is so critical - so peers with lived experience can give us the information and empathy we so desperately need. We also celebrate the many accomplishments of our Center for Family Involvement staff, and share how their work is changing lives.  The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES:  Nickie Brandenburger is the Director of the CFI's Family to Family Network.  More about I'm Determined. Interview with I'm Determined founding member Dr. John McNaught.  More about the sibling perspective.  Lisa Richard is the CFI's Regional Network Coordinator for Southwest Virginia. She is also the Rural Outreach Specialist.  Lisa is also a part of the Genetic Navigator Program.  More about Carilion which Lisa mentioned.   River's Way is the community organization that Lisa's children find benificial. Lisa was a guest on the podcast back in May, sharing her experiences as a parent, advocate, and person.   Jen Reese is the Regional Network Coordinator for Northern Virginia and part of the Genetic Navigator Program.  The STXBP1 Disorders website features the lattest on the condition as well as the FDA recording that Jen participated in. A podcast on the diagnostic odyssey one mother faced for her child's rare genetic condition.   Parenting Special Needs feature on transitioning to the empty nest.  Mauretta, Edgar, Lisa, and Patrice are all part of the CFI's Cultural Broker Initiative Elderhood and Aging Families.      TRANSCRIPT:   01:00:07:21 - 01:00:37:14 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives takes when a loved one has a disability. I joined the club, so to speak, when my first child was born with Down's Syndrome in 2010. Arlo didn't just make me a parent. He transformed me into an advocate for all people with disabilities.   01:00:37:20 - 01:01:05:11 Erin Croyle He was also the catalyst for a major career shift. I joined the Center for Family Involvement at VCU's, Partnership for People with Disabilities, a few years after he was born. Utilizing my journalism and television producer background as a communications specialist, it's some of the most meaningful work I've ever done because we provide emotional and informational support to people with disabilities and their families.   01:01:05:13 - 01:01:36:22 Erin Croyle People like me, my husband Arlo, and his amazing, gorgeous, younger siblings. I know how important this kind of support is because even though I provide it, I need it too, because I'll never forget how devastated and lost I was sitting next to my son while he was in the Negro. Because I'll forever be on this roller coaster of medical mysteries, decoding behaviors, waves of grief, caregiving, fighting, embolism, advocacy and all of the things.   01:01:36:24 - 01:02:03:05 Erin Croyle The beauty of the Center for Family Involvement is that every staff member and volunteer gets this because they live it too. Everyone at the CFI has a loved one with a disability. At the same time, we're rich in diversity, culturally, socioeconomically, generationally, education really and so much more, including the many disabilities, were not eligible for our final podcast of 2023.   01:02:03:07 - 01:02:29:08 Erin Croyle We're celebrating the Center for Family involvement by sharing what exactly it is we do all day, why we do what we do, and why this work is so important. We start with the director of the CFI Family two Family Network, Nickie Brandenburger. Nickie, I'm so glad you're here. You came to CFI in 2015 after working as a service coordinator for nearly two decades.   01:02:29:10 - 01:02:38:19 Erin Croyle Can you tell us how you ended up with the Center for Family Involvement and how your professional and lived experiences have informed your work?   01:02:38:21 - 01:03:02:11 Nickie Brandenburger So I am a special education teacher by trade. I went to college with the intent to be a special ed teacher end of my college career. I was having a difficult time thinking about being within the four walls of a classroom. I was really fascinated and couldn't stop thinking about what was happening when that child got off the school bus.   01:03:02:11 - 01:03:33:22 Nickie Brandenburger At the end of the day and went home. What was their family life situation like? Who were those other people that were involved in their life? What happened after graduation? During the summer, when school sessions not end, I could not stop thinking about life outside of the school system for families that are raising children with disabilities. So I sort of shifted gears and got a job right out of school at 22, working with a community services board in Lynchburg, Virginia, providing what's called support coordination.   01:03:33:23 - 01:04:04:14 Nickie Brandenburger Back then, the phrase was case management, basically providing support to families of children and adults with developmental disabilities. So I did that for about 21 years. Was exposed to so many different types of families, different dynamics. And it was I love the work. About 11 years into the work, I became a mother and I had my son Thomas, in 2005 and perfectly normal pregnancy and delivery.   01:04:04:14 - 01:04:31:02 Nickie Brandenburger But around three months we started to notice, you know, something was a little off and he was having difficulty feeding and eating. He started to he stopped gaining weight. And I can remember taking him to the pediatrician because he was refusing to nurse and wasn't sleeping well. And something was off. And I remember looking over the physician shoulder to the notes that he was writing, and I saw the term failure to thrive.   01:04:31:02 - 01:04:51:17 Nickie Brandenburger And I thought, my gosh, what does this mean? So that kind of began us trying to find diagnosis and what exactly was happening with him and with Thomas. It was hard. You can't really label it with one thing. There were a lot of little things that kind of combined made things more difficult for him. Around 18 months, he really didn't have language.   01:04:51:19 - 01:05:16:15 Nickie Brandenburger He would go from 0 to 10 really quickly, biting, difficulty sleeping. So we were assessed by our local community Services Board in Henrico County, and he qualified for early intervention. They determined that he had some sensory processing issues and just a global greater than 25% delay. And that's sort of kind of how you begin to access early intervention services.   01:05:16:15 - 01:05:38:11 Nickie Brandenburger And at the time, you know, I was very overwhelmed and I can definitely remember being confused about what my next steps were. But I was pretty tough on myself in that I was suddenly accessing services from a service delivery system that I'd been a part of for 11 years. And suddenly I was wearing this parent hat and it was very uncomfortable for me.   01:05:38:12 - 01:06:00:20 Nickie Brandenburger You know, there were professionals that were trying to support us in our early intervention journey with our son that knew me, you know, as a professional. And suddenly I was a parent, too. And I didn't know how to handle that and process it at the time. So, you know, now that my son is 18, I can look back and acknowledge and say that there was definitely a little bit of shame and maybe some embarrassment.   01:06:00:20 - 01:06:23:11 Nickie Brandenburger And I didn't know how to articulate that. So that probably resulted in making it harder for myself than it really had to be, because I was trying to process exactly what was happening. And I think there's something to be said about parents if you're blissfully clueless about disabilities. But I knew enough to make it a little scary, so that was pretty tough for us.   01:06:23:11 - 01:06:48:16 Nickie Brandenburger So I had great support from friends and family. My husband and I benefit from having family members that are in the field. My husband is a public school educator. His sister is a special education teacher. My mother in law's occupational therapist, father in law is a physical therapist. My brother's wife is a special ed teacher and has a brother with Down's syndrome, you know.   01:06:48:18 - 01:07:05:10 Nickie Brandenburger So we had all of these family members and professionals kind of around us that knew. So there was a lot of support, but I was definitely hard on myself. So fast forward to, you know, 2015 and I was actually when I found out about the job at the Center for Family Involvement, I wasn't looking for a job change.   01:07:05:11 - 01:07:25:06 Nickie Brandenburger I was happy where I was, but I was trying to find resources for a family that I was supporting and I was trying to find some resources for them, Other parents that had children with disabilities that were also Latino. And so I kind of came across the website. I knew about the Partnership for People with Disabilities. I didn't know specifically about the Center for Family involvement.   01:07:25:08 - 01:07:58:12 Nickie Brandenburger So I kind of fell upon the website and saw I notice about a job position and I read the job description and the director for family, the Family Services, and I thought, my gosh, I could do this. This is a perfect way to sort of marry my two very specific experiences. Being a professional in the field and supporting so many families over the years that had children with disabilities and then suddenly being a parent, accessing supports and advocating for my son and I could marry those two together into one.   01:07:58:12 - 01:08:00:14 Nickie Brandenburger And so I applied and I got the job.   01:08:00:16 - 01:08:27:06 Jen Reese I find it so strange that we've worked together for so long, and I didn't know the many details of what I like to call origin story. I can't help but think because of all the families we help and we talked to after you had your son. How did that change your perspective of the work you did in your CSB?   01:08:27:07 - 01:08:51:16 Jen Reese Because I know that for me and so many other parents, it seems these are great. Everyone in early intervention was was great, but they also didn't have all the information that you need because it's just not part of their scope of work. And so here you are on the tightrope of both. So how did your perspective change?   01:08:51:18 - 01:09:22:20 Nickie Brandenburger That's a really good question. So the first couple of years, because I can admit now that there was some embarrassment and shame and I was still processing all of it. I don't know if it affected me that much, but eventually I do think it helped me to be so much more empathetic to what families were going through. I could stand in their shoes for a bit right, if you will, when I would attend IEP meetings for families to help support them, and the mothers would get emotional talking about the needs their children have.   01:09:22:22 - 01:09:42:16 Nickie Brandenburger I would get emotional with them because I could relate so much, but I have this story, so I think my son was probably about six or seven. It was just before I came to CFI and I was working with a family, a mother who had a son with Down syndrome. And at the time her son was probably three or four and we had become really close.   01:09:42:16 - 01:10:04:03 Nickie Brandenburger This mom and I and I would visit them every three months and, you know, and get to know her son and advocate for them. And one day we were having this conversation and I had felt comfortable enough telling this mother that I had a child that was accessing early intervention services and struggling in school. And at that point, I believe he was having a lot of medical issues and we had just begun his five of four.   01:10:04:08 - 01:10:24:19 Nickie Brandenburger And so I was sort of I felt comfortable in telling this mom kind of what was going on with me personally. And so she was sitting and listening. You know, this is a mom again, I had been giving professional support to for many years. So she's listening and she's nodding as I'm telling the story of, you know, trying to wrap supports around him and managing all of these appointments and this and that.   01:10:24:21 - 01:10:45:24 Nickie Brandenburger And she kind of got a little smirk on her face and she paused for a second. She said, Nickie can I give you a little bit of advice? And I said, Sure, why I'm telling you. And she said, Stay in your lane. And I at first I thought, What in the world does she mean? Stay my lane? And she kind of laughed and she said, You know, you have been a fantastic support coordinator for our family.   01:10:46:01 - 01:11:06:00 Nickie Brandenburger We have really benefited from your knowledge and your resources. And I think, you know, I'm so appreciative of it. But you are also Thomas mom. And I think sometimes it's easy to get into being a case manager or support coordinator for your son. And it's important because you do have a lot to manage, she said. But stay in your lane, stay in your mom.   01:11:06:00 - 01:11:43:11 Nickie Brandenburger LANE And that's what she meant by that. And I was actually speech less, but in a good way because she was right. I really needed to learn to balance it better. The universe sort of gives you what you need at the time you need it. And that incident was probably about a year before I came to CFI. But that really that moment was really pivotal for me in terms of being able to marry those two things together, being a parent and advocating and understanding the challenges, but also supporting other parents and working with professionals so that that's really when it pivoted.   01:11:43:13 - 01:12:13:21 Jen Reese That is a really good example of what we deal with at the Center for Family Involvement all the time. And I think about how sometimes it's not possible to stay in your lane because when we have to deal with the IEP process or getting second opinions and really going up against what a doctor tells you, because in your bones, you know that it's wrong and these things are hard and.   01:12:13:23 - 01:12:14:10 Nickie Brandenburger Sometimes you.   01:12:14:10 - 01:12:34:12 Jen Reese Want to stay in your lane, but you can't. With the CVI, as we know how to help people kind of do that. And that's why we're so passionate about the work that we do. So can you give some examples of some of the work we've done where we have helped families in this way to kind of figure out how to navigate this road?   01:12:34:12 - 01:12:43:03 Jen Reese Because it's hard and there aren't that many of us who have children with disabilities. It's just such a different world.   01:12:43:08 - 01:13:14:06 Nickie Brandenburger And I think that's one of the things that's unique about the Center for Family involvement. And, you know, our staff that are spread throughout the state of Virginia and our network of what we call family navigators, which are parents and family members and caregivers that have loved ones with disabilities. And they're spread throughout the state of Virginia. So our network has, you know, 40 plus volunteers and then 20 odd staff who all have very different experiences, you know, very different cultural backgrounds.   01:13:14:08 - 01:13:33:04 Nickie Brandenburger Some of us were born in a country outside of the U.S. Some of us were in military families, and we had that transient sort of lifestyle and childhood. Some of us live in rural communities with very few resources or limited resources, and some of us live in cities where we're almost overwhelmed with resources. And there's everything in between.   01:13:33:06 - 01:14:03:19 Nickie Brandenburger We have children of all ages with all different types of disabilities, but the one common denominator that we all have at the Center for Family Involvement is we have someone we love very dearly that has a disability or some sort of special health care need the magic in the work that we do, the family to family, parent to parent support is that when you can connect with that person, that has reached out looking for help, when you can connect with that parent and say, me too.   01:14:03:21 - 01:14:32:24 Nickie Brandenburger There's a magic that happens and sometimes you'll feel a little goose bumps on your skin. You feel that connection when you can share a story and it helps another parent feel validated in how they're feeling, what they're experiencing. Because you say, Yeah, me too. Been there, done that. And it helps even more when the person you're talking to looks like you maybe is from the same cultural background is you lives in the same community.   01:14:33:01 - 01:14:53:03 Nickie Brandenburger And that is also unique, I think, to the Center for Family involvement because we tried to ensure that when a family calls us and asks to be matched with another parent that we have taken into account a lot of different things, we want that match to be, you know, for there to be some perceived sameness among those two parents.   01:14:53:03 - 01:15:15:06 Nickie Brandenburger And sometimes that perceived sameness is the diagnosis that the child, if you've got a child with a really unique, rare genetic disorder and you find another parent that has that exact same rare genetic disorder, that's the perceived sameness and the connection, sometimes it's cultural background. You know, your children may have a very different diagnosis, but if you both are from South America, that's that connection.   01:15:15:06 - 01:15:34:02 Nickie Brandenburger You know, you speak the same language. And I think that that is one of the driving forces behind the work that we do. And I think because we also at the Virginia Center for Family Involvement have connections with partners outside of Virginia. And so we also have a unique opportunity to be able to match and support parents outside of the state.   01:15:34:04 - 01:15:55:02 Nickie Brandenburger You know, we have these other network sister organizations that also do parent to parent, family to family support throughout the United States. And we can reach out to each other and say, hey, I've got this family. This is what they're dealing with. This is the dynamic. And you can send that out to all of the other state organizations and match.   01:15:55:02 - 01:16:17:14 Nickie Brandenburger And I've supported parents in Texas and South Carolina. We've supported parents in Alaska. That model of support, which really kind of started a long time ago, the parent to parent model started, I think, in the seventies with parents sitting around a kitchen table saying, hey, you know, we we have lived experience that should count for something, lived experience should equate to some sort of professional experience.   01:16:17:14 - 01:16:46:05 Nickie Brandenburger And I think that that is also at the the basis of what we do at the Center for Family involvement, because, yes, we're parents, but we've been accessing those services and resources for our family members. So we have knowledge which equates to professional experience. And so it's all about where in those two hats. And I think another thing that we do is we're able to coach parents that haven't had an opportunity to learn how to be a collaborative advocate.   01:16:46:08 - 01:17:03:01 Nickie Brandenburger It's it doesn't come naturally to parents. This child is born to you. You're you love them. You want what's best for them. But there's a period of grief. I think, that every parent goes through like I did with my own son, a period of denial and grief of what is in front of you with raising this child with a disability.   01:17:03:01 - 01:17:31:11 Nickie Brandenburger And that takes a while sometimes for parents to get through that. And they may not have the resources around them to help them cope with that. I have lots of resources around me and I still struggle, right? And so I love the opportunity to be able to work with a parent that needs that kind of coaching and mentor and they need someone to one, validate what they've experienced and not shame them or immediately start pointing them in the direction, say, call this person, do this.   01:17:31:11 - 01:17:52:15 Nickie Brandenburger And you know, some families aren't able to take in information from you about resources they can tap into because they're still processing their emotions. So you got to sometimes have to step back and slow down. And the first line of support is just shut up and listen. Just listen to their story. You can take notes, but hear them out first.   01:17:52:15 - 01:18:12:24 Nickie Brandenburger Don't immediately start diving in to provide support and resources. I think there's a lot of organizations out there that do that. That's what I did as a support coordinator. My job was to immediately lengthen to services, right? But I didn't have that emotional connection with them before I became a parent. I might have been a really good support coordinator and I could say, have you tried this resource?   01:18:12:24 - 01:18:37:21 Nickie Brandenburger And, you know, I'd been in the field long enough. I knew a lot, but I certainly didn't know what it was like to be a parent. But I think that's definitely something at the Center for Family Involvement that makes us really unique from some of the other parent organizations that we really do try to focus on that emotional support using active listening skills and motivational interviewing techniques to try to get at what's behind the emotion.   01:18:38:01 - 01:19:02:15 Nickie Brandenburger Something like anger. When you're working with a parent that's angry or frustrated, there's something behind that, that emotion of anger and frustration. Usually it's fear or sadness. And so when you can get to that, sometimes it can break down those walls so that that parent can process those emotions, acknowledge it, realize it's validated emotion, and then move on to a place where they're willing to accept help and resources.   01:19:02:17 - 01:19:09:06 Nickie Brandenburger That doesn't come to everybody naturally. Sometimes they need to be taught that or somebody needs to mentor them.   01:19:09:08 - 01:19:32:13 Jen Reese I think something that is also important before we have to wrap is we talk about family to family support and we match families with people with similar needs. But it's not just it's so much more than what you think of just sitting and chatting in a coffee shop because the people with Center for Family Involvement, the staff and the volunteers, they have training.   01:19:32:16 - 01:20:06:05 Jen Reese This is family engagement, but this is intentional and informed engagement. And so it's a little bit different than just joining a group on Facebook and chatting there. So often I see a group of well-meaning people get together and it is just a lot of letting things out. But there's no movement forward, there's no solutions based ideas, and I feel like the work that we do, you can let it all out, but then you can also offer solutions and ways to deal with what you're going through.   01:20:06:07 - 01:20:09:01 Erin Croyle You're doing the training. Nickie  What do you see?   01:20:09:03 - 01:20:27:06 Nickie Brandenburger It is so important when you're providing support to a parent and they're asking for resources. It needs to be unbiased information. I do think that there are some organizations and support networks out there that are great about when a parent wants to have a place to vent their frustration. You know, that may be the intent of a certain group, and that's okay.   01:20:27:11 - 01:20:44:18 Nickie Brandenburger But, you know, to move past that to make progress, you need to kind of know what resources are available. And I can get a little frustrated sometimes with some of the like, for example, social media groups where, you know, you can go out there and put a comment or ask a question about your child and you're going to get an opinion whether you like it or not.   01:20:44:18 - 01:21:07:22 Nickie Brandenburger But there's a lot of like if you put the information out there, someone is going to say something. And just because one parent may have had a bad experience with an organization doesn't mean that you will. And so I think one thing we really emphasize in our training with staff and volunteers is the information and resources that we share and needs to be unbiased, because what works for one family may not work for another, but they need to at least know what's available.   01:21:07:22 - 01:21:25:00 Nickie Brandenburger And I think there is a little too much bias sometimes, and that's very confusing for a family and it can really lead them down. You know, the wrong path. If somebody is saying, don't do that, that's a terrible option for you, how do you know it might have not worked out for your family, but it can for somebody else's.   01:21:25:00 - 01:21:47:15 Nickie Brandenburger And we really are very careful about that because I think, like I said, it can be very overwhelming for a family if they are led down a path that doesn't get them anywhere or even led down or encouraged to be volatile and collaborative. If you're supporting a parent and you're encouraging them, let's go into that IEP and and we're going to really let them have it in the end.   01:21:47:15 - 01:22:11:19 Nickie Brandenburger I just don't think that is very effective for everybody. Especially educators are stressed and overwhelmed these days. They have a lot going on. And so to kind of come in at that, the whole system is against my child. That can be really a tough situation that doesn't really get you in the end what you're looking for. And so really trying to encourage collaboration and sitting back and taking all the information in and making an informed choice.   01:22:11:19 - 01:22:25:10 Nickie Brandenburger So when you offer that information in an unbiased way, it does allow that parent to take a step back and process it and then make an informed choice. And I think that that is a really important part of our work for sure.   01:22:25:12 - 01:22:29:13 Erin Croyle Absolutely. And I think something that it even helps me.   01:22:29:15 - 01:22:31:04 Nickie Brandenburger Is.   01:22:31:06 - 01:22:55:01 Erin Croyle The honesty that we share when we talk about this is I look at our colleagues, I look at Dana Yarborough, I look at everyone when we talk about IEP meetings. We know how to help families do it. But we will go ahead and tell you, like I can say, I cry at almost every IEP meeting. I just get emotionally because it's your child, it's your heart sitting there on the table.   01:22:55:01 - 01:23:22:07 Erin Croyle So we know that it's easy to say how to do things and and whatnot, but we also know how hard it all is and will help validate that. So you don't feel I mean, you know how sometimes you feel crazy? I mean, literally and I but she's our mental health specialist. I'm sorry. I know we're not supposed to use that word, but I mean that literally it's the hardest job in the world, parenting.   01:23:22:09 - 01:23:45:22 Erin Croyle And so to have parents in a similar experience who also have training, too, to guide you is such a rare thing to be able to offer. And, Nickie, I know you have to go. I have one last two part question. Okay. I'm looking at the work that we've done in 2023. I'd love to know a couple of things that you're most proud of, and I want to know what you're excited about.   01:23:45:24 - 01:23:47:13 Erin Croyle For 2024.   01:23:47:15 - 01:24:07:22 Nickie Brandenburger I love so much about my job, but one of my most favorite projects is working on the I'm Determined State team, which is sponsored by the Virginia Department of Education. But it really is a wonderful program that really encourages self determination among students with disabilities. And there is an element of, you know, how can youth learn how to become more self-determined?   01:24:08:00 - 01:24:38:21 Nickie Brandenburger How can the parents support their youth to be more self-determined? And how can educators support the students and parents self-determined? So it's a beautiful, like triangular relationship. And I've had such a wonderful experience over this past year working on that project, because not only at my supporting parents, but I'm actually able to to work directly with youth and these wonderful youth leaders, youth that have disabilities that are learning how to be leaders around the state, to support other youth with disabilities to become more self-determined.   01:24:38:21 - 01:25:05:00 Nickie Brandenburger And we've had great opportunities to work with special educators. I just came off of a conference last week, the Undetermined Aspire Symposium. We had just over 100 specialized teachers from all over Virginia attend. I was able to lead a session with. I had to Co-presenters one is a former youth leader, a young woman who has a disability and received special education services, and now she's actually a paraprofessional working in the school system.   01:25:05:00 - 01:25:27:22 Nickie Brandenburger So she was sharing her perspective as a former youth leader and a current paraprofessional and using, I'm determined, tools to support children to be more self determined. My other colleague is with James Madison University, the training and technical assistance there and she's got just argued for her dissertation in August and now has her doctorate in education. And she was there giving her perspective as a special educator.   01:25:27:24 - 01:25:44:14 Nickie Brandenburger And I had a chance to give my perspective as a parent on how we supported our son with Self-determine the Nation and identifying what his strengths and needs were. And it was just such a great opportunity to be able to be with teachers and youth leaders and parents all together so that I'd just really enjoyed that project this year.   01:25:44:14 - 01:25:49:02 Nickie Brandenburger And we've done some really wonderful things. And again, next year I think we've got some even better things planned.   01:25:49:02 - 01:25:55:12 Erin Croyle So I love that you brought up youth and the future, and I just.   01:25:55:14 - 01:25:56:01 Erin Croyle Have to.   01:25:56:01 - 01:26:13:04 Erin Croyle Add the self-determination is so important. We actually also do work with siblings and talk a lot about supporting siblings. And some of the wisdom I hear from, you know, the siblings and the self advocates. I mean, I it gives me so much hope for our future.   01:26:13:06 - 01:26:32:11 Nickie Brandenburger Yeah. You know, and I think, you know, the reason why I've probably been so excited this year about that work because I have an opportunity to work so much closer with the youth leaders on that project is that my son just transitioned from high school and he is now a freshman in college. You know, 18 years ago, if you'd told me that we'd be here, I don't know if I would have believed it.   01:26:32:13 - 01:26:53:11 Nickie Brandenburger And so because we went through that transition with him and he's doing really well, you know, all of that work the last eight years to support him has paid off. And I see all these fantastic youth leaders doing the work now and connecting with other kids around the state of Virginia and encouraging them to be self-determined and speak up for themselves and has their own motivation.   01:26:53:11 - 01:26:57:20 Nickie Brandenburger So it benefits everybody, really. But yeah, it's one of my favorite projects.   01:26:57:22 - 01:27:07:24 Erin Croyle Yeah. And I'll put a link to Undetermined in the show notes. And we also interviewed one of undetermined founders, John McNaught, earlier this year. I'll put the link to that in the show notes as well.   01:27:08:01 - 01:27:15:19 Nickie Brandenburger Thank you so much for having me. I absolutely love talking and bragging a little bit about our work, so I've really enjoyed our conversation. I could talk to you forever, I think.   01:27:15:19 - 01:27:19:00 Erin Croyle Erin, Same. And we'll do this again.   01:27:19:02 - 01:27:44:04 Erin Croyle As Nickie mentioned, we have family navigators all across Virginia and connections across the country. We know how different our lives are based on where we live. For families in rural areas, getting the care and services you need can be complicated. That's why we have a rural outreach specialist. Her name is Lisa Richard and she dropped in for the best of 2023 podcast as well.   01:27:44:06 - 01:27:59:19 Erin Croyle Lisa, I spoke to you earlier in 2023 about Mother's Day for that special kind of talking about how different the experience is for us having children with disabilities. Lisa, Can we start, though, for a refresher? Can you tell folks a little bit about yourself?   01:27:59:21 - 01:28:21:15 Lisa Richard Yeah, sure. Erin. My name is Lisa Richard, and I work at the Center for Family Involvement. I currently cover Southwest Virginia, but first and foremost, I'm always a parent. My oldest daughter, Zoe, has Down syndrome, and we have a rather large family. If you remember from the podcast in May, I have seven kids and my fourth child is adopted.   01:28:21:15 - 01:28:31:06 Lisa Richard His name's Camden. He also has Down's syndrome and I just really enjoy working at the partnership and supporting families and caregivers.   01:28:31:08 - 01:28:55:07 Erin Croyle Yeah, same. I never expected to like a job so much because it just relates so much to our life. Can you tell me and those listening a little bit more about the specific work that you do for the partnership? We have people across the Center for Family Involvement that just work with demographics that don't have enough attention, and that rural component is huge.   01:28:55:07 - 01:28:59:11 Erin Croyle So fill us in on on your your work.   01:28:59:13 - 01:29:29:03 Lisa Richard Yeah, sure, Erin You know, it's been a really fulfilling part of what I do because when I was asked by Nickie and Dana a while back now a few years ago if I would be interested in the rural outreach position, I never realized like how much of it actually means to me or how much the difference between trying to receive support and help and raise a child or family or live with a family member that has a disability.   01:29:29:03 - 01:30:04:08 Lisa Richard The difference in being in a rural community and just the cultural part of that, the transportation part of that, the information and lack of information or misinformation part of that. And it's become a really rewarding part of what I do because I also live in a rural community and I've lived in many rural communities and just recognizing I just had a conversation with someone this morning and I my daughter needed some medical attention and I'm going to have to drive one hour away to get that for her.   01:30:04:08 - 01:30:40:13 Lisa Richard And just like how you have to reorganize your day, your work, your time, your efforts and in trying to do those things that I'm not saying it's not difficult in areas that are more suburban or urban. It's just a different type of support that's needed in rural communities. And so I have really sort of grown this outreach program and one of the great things that happened is that I was able to partner with Carilion, and Carilion now sends me and refers lots of families that live and we are really rural and remote parts of southwest Virginia that I'm able to support and help.   01:30:40:13 - 01:30:46:00 Lisa Richard And that's been an amazing part of what I've been able to do these last couple of years.   01:30:46:02 - 01:30:47:23 Erin Croyle And what is Carilion?   01:30:48:00 - 01:31:09:16 Lisa Richard So Carilion is a medical center in Roanoke, Virginia, and I was able to connect with an education consultant. I had done a presentation with Nickie and Rebecca a few years back, and she eventually just reached back out to me and said, you know, I have a family that I'm worried about. Would you possibly be able to support them?   01:31:09:16 - 01:31:27:17 Lisa Richard If you can tell me a little bit more about what you do? And I'm like, This is exactly what I do. I'd be happy. And that has since grown. Now I work with the educational consultant, I work with the social worker, I work with the primary care physician, I work with the nurse practitioner, and they send referrals to me consistently every week.   01:31:27:21 - 01:31:36:08 Lisa Richard Different families that they've worked with that they thought would benefit from help to see if I just navigating systems or providing emotional support to them.   01:31:36:10 - 01:31:38:24 Erin Croyle Thanks, Lisa, and I'll be sure to put some more.   01:31:38:24 - 01:31:39:21 Erin Croyle Information about.   01:31:39:21 - 01:31:41:09 Erin Croyle Carelon in the show notes.   01:31:41:09 - 01:31:43:03 Erin Croyle For anyone interested.   01:31:43:05 - 01:32:06:12 Erin Croyle I grew up in a rural area as you know, in northeast Ohio. Yeah. And now I live it's not quite rural, but I live somewhere where you have to drive a really long way to get to doctor's and especially doctors that understand some of the really complex issues that children and adults with disabilities face. Yeah. So I'm just curious, Lisa, I'd like to hear a couple of highlights.   01:32:06:12 - 01:32:19:11 Erin Croyle Of course, without sharing private information, which we would never do from year to year, because I don't think that all of our listeners really understand some of the specific things that families in rural areas face.   01:32:19:13 - 01:32:51:04 Lisa Richard As you know, Erin there's like incredibly long wait lists for all kinds of things, whether you live close to them or you don't, because people oftentimes in rural communities don't have those resources nearby. The one just not aware of them or transportation is a huge issue for some of them because it requires so much time. It's not even necessarily the vehicle, but, you know, can you take a whole day off of work and and what that costs to get there and then you possibly have to stay overnight.   01:32:51:06 - 01:33:20:04 Lisa Richard So oftentimes those big medical appointments are put off or they're not scheduled at all. And just the supports that are available possibly in the community, very little rest that support is available. We talk a lot about telehealth, but there's a digital divide and digital literacy is often an issue. I have families that I speak with that still have landlines and are not even able to access some of those resources.   01:33:20:04 - 01:33:46:11 Lisa Richard Even if they knew about the Boston Times, what I do is I feel like a form of triage, you know, where we'll speak and we'll kind of look at what's the most important thing right now? What are you really struggling with? You need information about waivers. You need information about school IEP or just additional resources like ABA. I think families that don't know that their insurance would possibly cover special therapies.   01:33:46:13 - 01:34:12:21 Lisa Richard And so disability, I have found, can be very isolating. And it's even more isolating in these tiny communities. And I have found that communities do tend to be very supportive, these rural communities, but they also just don't necessarily always have information that can be helpful. So, you know, the benefits are that you're often in a tight knit community that can be supportive.   01:34:12:23 - 01:34:40:04 Lisa Richard But, you know, the downside is what are the resources that are out there? And really just looking at those kind of remote areas, understanding culture of them, there's trust issues sometimes, you know, getting resources outside of your community. So there's lots of different layers, but, you know, as I've done it over the years, I know better like the questions to ask and better able to listen.   01:34:40:04 - 01:35:06:21 Lisa Richard I mean, we get great training on active listening. And I mean, that's a lot of what I do is just listening to families and then better understanding what supports they're in need of and then trying to find those supports. I mean, the great thing about CFI is we have so many wonderful, talented, educated people to reach out to that if I don't know the answer, I'm always like, Hey, I'll I'll be happy to say I don't know if I don't know and reach out to somebody that does.   01:35:07:02 - 01:35:18:14 Lisa Richard And I do that quite often. The rural communities have my heart. I know what it's like. I love helping them and assisting them, and it's been a real gift to be able to do so.   01:35:18:16 - 01:35:39:17 Erin Croyle Yeah, even us within the Center for Family Involvement, we're always helping each other because even if we're well-versed in something, something happens with our kiddos or a different kiddo has something that happens and we lean on each other. And just like you said, if we don't know the answers, we know who to look to to find the answers.   01:35:39:18 - 01:35:41:23 Erin Croyle It's a really great network.   01:35:42:00 - 01:36:05:12 Lisa Richard 100%. I mean, Dawn Snow, which works with blind and hard of hearing, she was the one that taught me about waivers. And then Jen Reese is the one that consistently keeps me informed about them. And I can't even tell you how many people I've helped with waiver resources in rural communities because of those two women and CFI and how learning from them has helped me to help so many other people.   01:36:05:12 - 01:36:24:04 Lisa Richard And the CSB is now are reaching out to me because that waiver waitlist is so long and they'll say, could you possibly work with some of these families and see if they're eligible for the Medicaid waiver? The key plus and I'm able to help them now because I learned from Dawn and Jen. So we do we learn from each other.   01:36:24:04 - 01:36:25:24 Lisa Richard And it's a great support system.   01:36:26:01 - 01:36:43:13 Erin Croyle Exactly. We actually just did a special with the folks that handle IFSP funds, and I'll put a link to that in the show notes. Lisa, you do so much. Can you just talk quickly about some of your other roles within CFI and as a community member?   01:36:43:15 - 01:37:09:15 Lisa Richard I serve on multiple boards. I'm real excited about a board. Well, it's not necessarily a board. It's a regional council that Dana actually referred me to, which is Ballard Health Regional Advisory Council, and those are all the hospital systems in southwest Virginia, northeast Tennessee. And I've been able to participate in that as I've been well trained to do, bring the family perspective and the importance of that to the roles.   01:37:09:15 - 01:37:35:03 Lisa Richard And then I recently was appointed a board member for Southwest Virginia for the community service boards, for all of them in Southwest Virginia, and was just recently at a conference and asked to sit on another regional advisory council. So just sharing information about that family perspective and how important it is and necessary it is when making any sort of decisions, policy decisions or otherwise.   01:37:35:03 - 01:38:07:08 Lisa Richard And we always need to look to families and I would always say families first, because if you don't talk to the families, then it's not going to work out. It's policies don't support the families, then there's just really no need to proceed because it's never going to happen. You just can't push forward whatever your initiative is. And then personally, I sit on a community board that my son and daughter participate called River's Way, and that's just this incredible program is very inclusive and it has this remarkable walking program.   01:38:07:08 - 01:38:36:01 Lisa Richard And Zoe in Camden, my son and daughter, every day walk in different high schools, middle schools and elementary schools, as they're called, game changers, where they walk with typical students and students that are also served by special education services. And they talk to the classrooms, they walk through the classrooms, they new community theater. They do all types of different things in the community.   01:38:36:03 - 01:39:06:09 Lisa Richard It's been a real honor to sit on that board and just see how people intellectual disabilities aren't just living in the community, but they're thriving and they're providing real change and direction. I mean, they're called game changers because their people look to them for inspiration. I mean, my son sometimes walks five, six miles a and Zoe usually walks 1 to 2 miles a day, and they have a social media account.   01:39:06:09 - 01:39:23:16 Lisa Richard And so it's it's really fun to see everybody say, you know what I saw Zoe walk two miles today. So I got up off my chair and got outside. And it's been great to see them really contributing to their community and not just receiving services but being part of it.   01:39:23:18 - 01:39:39:05 Erin Croyle Yeah, and just hearing that, I think about, you know, I have a younger son with Down syndrome and the representation for students with disabilities to see they're not peers, but older people who look like them must really mean something.   01:39:39:07 - 01:40:01:07 Lisa Richard It's been so great. Erin And also this just happened the other day. I took Zoe on Saturday to McDonald's and a young woman stopped in and she grabbed Zoe and they hugged each other and she said, I remember walking with Zoe in middle school and it was such a great experience. And this happens to me time and again in the community that people recognize them.   01:40:01:07 - 01:40:34:08 Lisa Richard And then it makes me so happy because, you know, Zoe and Camden are older now and those opportunities weren't available and everybody was still really looking at segregated classrooms and specialized instruction. And and I've just seen the benefit of Zoe and Kim now being in the classrooms with kids that will hopefully not look at segregation as the option, but say, I remember having them walking with us and being with us and talking to them and why would we put them in a place far away?   01:40:34:08 - 01:40:47:23 Lisa Richard So I feel like it's doing so many things for the community and it's also helping people recognize the disabilities natural. And it's just a part of life and they're just like us. They just need additional supports.   01:40:48:00 - 01:41:01:14 Erin Croyle Yeah, absolutely. That's refreshing. So on top of all the things you're doing with work and your family, you also are a genetics navigator and you got a degree this year. Can you tell us a little.   01:41:01:14 - 01:41:02:24 Erin Croyle Bit about how you.   01:41:02:24 - 01:41:05:12 Erin Croyle Did all that and what you did?   01:41:05:14 - 01:41:35:08 Lisa Richard Wow. So I will speak briefly about the Genetics Navigator program. Really excited about that because we collaborated with Nine Mack, which is in New York Mid Atlantic Caribbean Regional Network Center, and they're seven across the country. And That collaboration has been really eye opening because we recognize a lot of people have a genetic diagnosis or don't have a diagnosis, and that genetics might be the answer for them, or at least an answer that they're looking for or to work things out.   01:41:35:10 - 01:42:13:04 Lisa Richard We're of course not in any way genetics counselors, and I know very little about genetics, but I am able, along with there's ten of us trained across Virginia to help families better access genetic services. And we've been trained to really help people better understand genetics and why it's important to understanding your child's diagnosis. And then it's not necessarily visiting a geneticist one time and getting a diagnosis that you can kind of see how whatever it is, your diagnosis is kind of works across the lifespan because different things will happen at different times.   01:42:13:04 - 01:42:35:16 Lisa Richard And it's really great to have access to a genetics counselor or to a geneticist and then really having that literacy and being able to have those discussions. So this has been a really exciting program and we continue to do outreach and presentations about it across the state. We're also partnered with the Virginia Department of Health in this program, So that's been really a great program.   01:42:35:18 - 01:43:04:03 Erin Croyle We ran into some technical difficulties, just as Lisa shared that she earned her master's in science from Virginia Commonwealth University this year. She's a remarkable woman with so much insight, as is our regional network coordinator for Northern Virginia, Jen Reese I like to refer to Jen as our waiver guru. She's always on top of the latest in that complex web of services that is so critical for so many individuals and families.   01:43:04:05 - 01:43:18:22 Erin Croyle When Jen isn't working or with her family, she's a powerful advocate for people with disabilities, especially those who are medically and diagnostically complex. I invited her to share more about her work with CFI and the FDA.   01:43:18:24 - 01:43:35:07 Erin Croyle Jen, thank you so much for joining us. I want to start by you giving us an introduction about who you are, but also who we were before I Children informs what we do so you can kind of include who you were before kids and then how your your girls changed you.   01:43:35:09 - 01:44:06:07 Jen Reese You are so before I had kids, I had a communications web content career that was at least 20 years. And then once my daughter was in 2008, I took on a real advocate role for her in her health care. And then whatever I learned, I always made sure to share with other families that progressed more, and we started sharing our story with some elected officials and decision makers to try to make sure people got resources they needed.   01:44:06:09 - 01:44:20:18 Lisa Richard So two daughters, both with disabilities, my older ones are much more prevalent and you can see it on her. And my other daughter has they call invisible disabilities, which is more mental health, atypical kind of stuff.   01:44:20:20 - 01:44:40:13 Erin Croyle Well, Jen, talking about that advocacy, you did it from the get go, which a rare thing. And I think that comes with having a rare diagnosis. I'd like to hear a little bit more about you paving the way with that and the work that you've done.   01:44:40:15 - 01:45:08:16 Jen Reese When my daughter was born, she had a really bad seizure disorder and they always assumed it was something genetic. But then they did a lot of genetic testing and everything would come back negative. And so I took the stance of we have to wait for science to catch up to her. And so finally, when she was four, she got a genetic diagnosis of a non inherited, which is considered called a noble genetic anomaly called step one.   01:45:08:19 - 01:45:31:19 Jen Reese And it is an issue with the processing of proteins in the brain. And so for a lot of the kids, it causes retractable seizures, intellectual developmental disabilities, and then everything that comes with that, you know, once we got that diagnosis, I got involved. When I Googled it first, there was nothing online except the like chemistry drawing of the proteins in the brain.   01:45:31:21 - 01:45:58:20 Jen Reese And so I created the first Facebook group for the diagnosis and was able to connect. And now we have connections worldwide with that group. Very interesting. There are some kids who get diagnosed now like three weeks old because they'll start having seizures and then genetic testing is way more prevalent now and much easier to get with insurance. And so they just send off for the whole exome genome and find, you know, anomalies.   01:45:58:20 - 01:46:38:24 Jen Reese And so kids are getting diagnosed at three weeks old. And then the oldest that we know of is in her forties. I think there's lots more people who have this diagnosis. It's it's a big spectrum and a lot of people just present with like a severe form of autism, not necessarily having seizures. So, you know, some of my advocacy also has included working with the little lobbyists, which is a group of parents that came together when the Medicaid was being threatened and, you know, has just turned into a very powerful resource organization for folks with or, you know, especially kids with any sort of high medical needs.   01:46:39:01 - 01:46:39:18 Erin Croyle Yeah, that's.   01:46:39:18 - 01:47:03:20 Erin Croyle A great group. And I'll put links to all of that in the show notes, both for your daughter's specific disability, but also little lobbyists, which it is tremendous. And we need to unite together to make any changes, as we've found out in our own work. You spoke in front of the FDA or submitted. Can you tell me more about that?   01:47:03:20 - 01:47:05:14 Erin Croyle Because that's a pretty big deal. Jen.   01:47:05:16 - 01:47:31:08 Jen Reese You are. So this is actually the second time I've done it. I back in 2019. What happens is the FDA wants to learn more about specific diagnoses, especially rare genetic diagnoses and rare diagnoses in general, and how it affects the people who have that diagnosis, their families and everything in everyday life. And so in 2019, I was invited to one before COVID in person in Baltimore.   01:47:31:08 - 01:48:13:15 Jen Reese It was connected with Johns Hopkins Hospital, and it talked about the kind of seizure disorder she has, which is called Lennox Gusto. It was great. We met in person. There were lots of other families. There were people from the FDA, people who work in the fields to really get a feeling and understanding of what that diagnosis means. So this year, the foundation for my daughter's genetic diagnosis, XP One Foundation, was working with the FDA to do a similar meeting to explain the needs of the kids, with the people, with the diagnosis, the families, and really give the FDA researchers, neuroscientists an understanding of what's going on in our lives.   01:48:13:15 - 01:48:34:12 Jen Reese And so it was an all day meeting this time it was on Zoom. They switched to Zoom after COVID and don't do anything in-person anymore. So there was an all day meeting and what they had done is identify a bunch of speakers beforehand who recorded their stories, and mine was on the topic of current and future treatments and how that would affect our family and my daughter in particular.   01:48:34:12 - 01:48:54:02 Jen Reese And so I recorded a video and they over laid some photos of my family, and I think there were ten videos that were played that day. And in addition to that, there was panel discussions and, you know, other speakers. And they also left it open for question and answer. She could call in. So we talked about all the different things.   01:48:54:04 - 01:49:15:20 Jen Reese You know, again, my daughter's diagnosis, a big spectrum. You know, there are some kids who are verbal and can walk and just have real severe behavior, you know, similar to a severe autism diagnosis. And then there are some kids like my daughter who are on the way more involved spectrum where the seizures have just cause irreparable damage to her brain.   01:49:15:20 - 01:49:36:24 Jen Reese And so she's really much more medically fragile. She needs total care. I explained, you know, her situation to people just so they get an understanding. Don't really like saying it this way, but that she's a infant in a 15 year old's body. And so, you know, like everything she needs, everything done for her. She even has a feeding tube.   01:49:37:01 - 01:50:00:10 Jen Reese And, you know, she she takes being sick a lot harder than some people and oftentimes ends up with pneumonia. So I talked about that and really the the in-depth care that she needs and what it really means for our family. And at one point, a lot of the parents on the session talking about how they wish their child could talk and and tell them when they were hurting.   01:50:00:10 - 01:50:22:24 Jen Reese And I started getting frustrated because, yes, being able to communicate would be great. But I want them to stop dying because just in the past month we've lost three more kids with this diagnosis. And it's either from SUDEP, which is sudden unexplained death from epilepsy. So it's a seizure you just can't recover from, or a lot of kids passed from severe respiratory issues.   01:50:23:01 - 01:50:43:05 Jen Reese So COVID was just a nightmare for us. People were talking about it would be great if they could communicate. And I'm like, Yes, that would be great. And I've always told Kailyn that if her first word is a four letter word, I am fine with that. But, you know, the fact that we were focusing on communication, I wanted the research to understand, yes, that's a good area to focus on.   01:50:43:05 - 01:50:54:00 Jen Reese But the overall, you know, too many of these babies are dying. So I really brought it back to that. It was it was an interesting day and it was a good discussion. And I think it'll make a difference.   01:50:54:02 - 01:50:59:10 Erin Croyle Well, Jen, thank you so much. It's always a pleasure talking to you.   01:50:59:12 - 01:51:07:24 Jen Reese Thank you.   01:51:08:01 - 01:51:37:13 Erin Croyle What Nickie, Lisa and Jen shared barely scratches the surface of what we do, Some other huge accomplishments for this year. Our mental health specialist, Patrice Beard, served as a AUCD’s, children's mental health champion from Virginia. AUCD is the Association of University Centers on Disabilities. It's a member organization that supports and promotes national network of university based interdisciplinary programs focused on disability.   01:51:37:15 - 01:52:03:00 Erin Croyle Its mental health champions work in partnership with the Centers for Disease Control to develop state specific strategic plans for mental health promotion, prevention supports and the creation of networks. Think schools, medical professionals, communities. This is to promote better connections within these systems. We're so thrilled that Patrice is being recognized as the champion we've always known her to be.    Cultural brokers   01:52:03:00 - 01:52:27:01 Erin Croyle Mauretta Copeland and Edgar Gamba are both family support specialist with Project Peace. In this case, peace stands for Promoting Employment After High School through Community Expertise. This project focuses on giving a voice to youth with disabilities so they can be part of the decision making process as they transition out of high school and into the community. Finding meaningful employment.   01:52:27:03 - 01:53:01:15 Erin Croyle As cultural broker to the LatinX community, Edgar runs the El Camino Support Group. The English translation for El Camino is “the way” which beautifully summarizes what families do for one another. We show each other the way,; something we all need as we journey through the twists and turns that come with caregiving.    Mauretta has had a jam packed year. In addition to her work as CFI’s cultural broker to the African-American community, she earned her bachelor's degree and became an empty nester, which can be a very different milestone when you have a child with a disability.   01:53:01:17 - 01:53:30:16 Erin Croyle Mauretta shared her experience with parenting Special Needs Magazine. I'll provide a link to that article in the show notes. It's got a lot of useful information for families whose kids are considering moving out.    Amel Ibrahim, our cultural broker to the Arabic and refugee communities, managed to publish a book in her free time. It's a 280 page book of poetry about love, homesickness, being a mother, being a human being, and having an autistic child.   01:53:30:18 - 01:53:48:03 Erin Croyle Amal has been writing since she was a child but put it on hold while raising her children. She returned to writing as a way to deal with pain and challenges. We'll be sure to let you know when the book is more widely available. This is just some of the work that we do outside of our everyday work of supporting families.   01:53:48:08 - 01:54:12:14 Erin Croyle That includes conferences in Virginia and nationally, collaborating with our funders and community partners, attending events where we can meet families and so much more. And of course, this podcast, which I launched in January in collaboration with my communications partner and friend Jill Rose, we've long recognized that there's a huge lack of information and content out there for families like ours.   01:54:12:16 - 01:54:31:01 Erin Croyle Our goal is to fill that void with entertaining, engaging, fact and resource filled programs that are relatable. We do this because we love podcasts and we recognize that there aren't really any parenting podcasts that touch on the things that we face every single day. So keep listening; rate, review, and   01:54:31:01 - 01:54:32:11 Jen Reese share this almost one year   01:54:32:11 - 01:54:40:08 Erin Croyle Old podcast of ours. This is the Odyssey Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.    

It's natural for parents to want their children to reach their full potential. But who decides what that is? And at what cost? In part two of my interview with Heather Trammell, we explore how dangerous societal expectations can be; and how inaccurate and harmful it is to label people as high-functioning and low-functioning. (You can listen to Part 1 here!)   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES: Heather Trammell is the Director of Family Support at the Down Syndrome Association of Northern Virginia. She took on that role after her first child was born with Down syndrome more than 20 years ago.  Freebird - the award winning short film Heather mentioning in the episode. It is a MUST watch. More about IDEA - the Individuals with Disabilities Education Act. More about the ADA - the Americans with Disabilities Act.     TRANSCRIPT 01:00:07:18 - 01:00:36:21 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down Syndrome in 2010. Now I work with the Center for Family Involvement at VCU’s Partnership for People with Disabilities.   01:00:37:11 - 01:01:01:24 Erin Croyle This podcast explores the triumphs and the hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we tackle the tough stuff too, which is why I've invited Heather Trammell to join us. Heather knows hard. She too has a child with Down syndrome. And how the medical team broke that news to her is both shocking and heartbreaking.   01:01:02:14 - 01:01:30:20 Erin Croyle After the dust settled, Heather became the director of Family Support at the Down Syndrome Association of Northern Virginia. She's one of the first people that parents talk to after they learned their child has Down syndrome. She sees firsthand how drastic different families handle diagnoses. Heather's also a powerful advocate for acceptance of all abilities so often the disability community showcases exceptional individuals.   01:01:31:05 - 01:02:01:21 Erin Croyle These people certainly should be celebrated. In doing so, though, are we perpetuating the offensive and inaccurate idea that some people are high functioning and others low functioning? We're going to get into all of this and so much more. So let's get started. Heather, I am so excited you're here. I should add that this is part two of my conversation with Heather, a link to part one, What to Expect when the unexpected Happens is in the show notes.   01:02:02:08 - 01:02:15:19 Erin Croyle Heather, this is something you've opened my eyes to and alluded to in part one. You're very outspoken about the harm that propping up and celebrating the best of the best of people with disabilities can do. Can you tell us more about that?   01:02:16:00 - 01:02:43:20 Heather Trammell Yeah, I'm definitely seeing it. And I've seen it change a little bit over the years, too. So I think in the early years when success stories were shared through via newspaper Internet websites, whatever, it did some good and it still does some good to see representation in media, positive representation in media of people with disabilities. It really does.   01:02:44:04 - 01:03:20:19 Heather Trammell I'm not saying it does nothing, but it's not a very complete picture either. I think sometimes, especially back in the day, we would see those stories and it would not naturally occurring to us to question whether that was the experience of every person with Down syndrome. We automatically assume that it could or should be. Every experience a person with Down syndrome, they all should get to be homecoming kings.   01:03:21:03 - 01:03:47:19 Heather Trammell They all should do this or do that, graduate from high school, etc. They all should do this. I don't think we question it as much. But then I think now we question those more. I think we we ask ourselves, is inspiration pouring okay, now and back then we can ask ourselves whether it was okay, we just did it.   01:03:48:05 - 01:04:16:14 Heather Trammell Now, mind you, my child was born. There was the early 2000s. We were coming out of the 1990s 1980s where positive thinking, let alone positive representation of people with Down syndrome and disabilities wasn't out there hardly at all. Remember, idea was a long till 1970, I think five, right? At the ADA, it was never. Was it always on the books?   01:04:16:19 - 01:04:41:18 Heather Trammell I mean, positive thinking about people with guns and girls wasn't a norm. And so I think people were glad to put that kind of stuff out there. But I think we can't get over or rely on it. And we we forgot that human nature doesn't naturally get curious about stuff. Human nature would normally bend towards us not being curious.   01:04:42:00 - 01:05:07:07 Heather Trammell We wouldn't ask ourselves because every person with Down syndrome experienced this. Maybe, maybe not. What did those parents do that made their child so amazing? I don't think we were as curious back then. I don't think human nature is yet still as curious as we could be. Maybe it served a purpose for our time. I don't know that it serves every purpose.   01:05:09:09 - 01:05:36:00 Erin Croyle Yeah. I mean, I feel one could argue that it's dangerous, that it implies that someone who isn't as advanced, if you will, isn't as worthy you alluded to in the first episode. And these terms are outdated now and we shouldn't use them. But in this context, we're going to use them high functioning and low functioning. Can you go into that a little bit more?   01:05:36:12 - 01:06:01:21 Heather Trammell I wish they were more outdated than they are those terms, but yet I hear them quite often. I hear it in both the communities that I set my fucking through, both autism and in Down Syndrome. I think one of the things that makes those really harmful is I think when we categorize people with that like that, first of all, we detract from their humanity.   01:06:02:07 - 01:06:26:00 Heather Trammell That you can have a good day and a bad day. I have good days and bad days. I do taekwondo and CrossFit, and I'll tell you, some days I'm on the white board. I'm doing great. Some days I land the head shut and some days I don't. You know, am I a high functioning person or a low functioning person?   01:06:26:17 - 01:06:50:10 Heather Trammell Well, some days I'm great. Some days are not. So I think it does a disservice that way because we're not letting people be human. We're not letting people have good days and bad days. We're categorizing them by how much we get from them if they meet our needs, if they line up on our dotted line and make it easier for us.   01:06:50:16 - 01:07:18:07 Heather Trammell They must be high functioning. Mhm. And, and if they're not then they're low. So my daughter with Down syndrome can do X and Y and Z. And her friend with Down syndrome cannot. We don't ask ourselves who's more worthy of a human being. We're asking ourselves, who is making my life easier? How does it affect me? It can be kind of self-centered.   01:07:18:19 - 01:07:46:11 Heather Trammell It also doesn't actually tell us everything we really need to know. Really. So if I drop my child off at camp and they're asking me, is she high functioning or low functioning? Answering that question will not give them the information that they need. What they really need to know is she does need help in the bathroom. But if you guys go on a two mile hike, she'll be fine.   01:07:47:10 - 01:08:06:10 Heather Trammell She does not speak very well or very clearly, but believe me, she has everything you say. She'll she'll let you know when things are not going right. So it doesn't really tell us what we need to know. It also doesn't. I mean, you tell me if you agree or not, does it? It kind of put people in a box.   01:08:06:11 - 01:08:34:13 Heather Trammell Oh, yeah. Like they never change. Yeah. Like this is this. You are high functioning. Therefore you will always be high functioning. You will be high functioning. Every situation. You'll be as high functioning at ten as you are at 21. It's not giving people room for growth. Right. I know that my daughter with Down syndrome is much more communicative in certain situations than she is in other situations.   01:08:35:04 - 01:08:59:07 Heather Trammell Does that mean she's high functioning or low function? What area are we talking about? High functioning, low voice. And you can just tell me what area we're talking about. My daughter with Down Syndrome can read, but she does not do math. High functioning or low functioning is kind of a broad term that doesn't really tell us what we need to know.   01:09:00:10 - 01:09:33:18 Heather Trammell And it divides parents in every possible crushing way. I just could not go into how disappointing it is to me to hear parents talk to each other about high functioning and low functioning, or to have to insinuate that Parent A has better because their child is quote unquote high functioning and then Parent B has a much harder time because their child is low functioning.   01:09:34:19 - 01:09:58:02 Heather Trammell We're not saying that quote unquote, high functioning kids don't have needs. If we go ahead and categorize somebody as high functioning, we could go down the path of thinking they need no help at all. Well, sometimes they actually do. Or I think, conversely, that if we categorize someone as low functioning, they have nothing to say, but they don't have nothing to say.   01:09:58:02 - 01:10:27:20 Heather Trammell They have everything you say, they have lots to contribute. But we're not going to hear that because we put them in the school box. That's called both function as very, very arduous. I just hearing parents insinuate or actually say, if you would only X, Y, z, then your child would be doing better as if we were parenting little vending machines.   01:10:28:14 - 01:11:03:01 Heather Trammell Quarter in, candy out right. If I, X, y, z, then ABC will happen. But there's no guarantee of that at all. I know a parent in my local area whose has all the money all the time, all the resources, all the therapy, a huge house time, enough to invest in anything. And yet her child struggles a lot, has needs a lot of support.   01:11:04:18 - 01:11:36:09 Heather Trammell We are not parenting vending machines and we're also not trying to be you know, my child is a project parent either. So I think sometimes when we divide between high functioning, low functioning, the next question is, well, what did you do? What did you do to make their skills so great? What did you do that they were so high functioning and that we insinuate that, of course, it's all on us is we're the ones that that made that happen.   01:11:37:12 - 01:11:57:21 Heather Trammell But even the parents I know whose children are doing very well, they don't always appreciate being quizzed like that. They don't appreciate that question at all. You might think they'd be flattered by it because their children are doing so well, but they're actually not flattered by the question at all. They're like, I just let them be themselves. I'm just working with raw material here.   01:11:58:09 - 01:12:36:00 Heather Trammell They didn't do something. It was like the magic therapy, the magic supplement, the perfect educational situation, and that's how they did it. Boom, poof. There I got like, I hope I'm shrinking now. Not necessarily. Some parents are doing everything they possibly can and their children skills struggle. And I think when we divide in high functioning emotion categories, we are putting a lot of pressure on our kids to not be themselves, not letting our children be themselves.   01:12:36:08 - 01:12:47:21 Heather Trammell And we're putting pressure on ourselves to be the deciding factor of how well our children are doing as that depending solely on us. And I'm not I don't believe it does.   01:12:49:22 - 01:13:09:04 Erin Croyle I think more parents need to hear that. I shout it from the rooftops because it really is something that exists. And I have had parents of older children with Down syndrome make very sweet suggestions, mind you, but.   01:13:09:10 - 01:13:10:23 Heather Trammell Comes from a good place. I'm sure.   01:13:11:05 - 01:13:41:21 Erin Croyle It does. Yeah, it was. You know, here here's like this accomplished adult and I hear from the parent, Oh, well, I read this with him and I did this with them and I did this. And here I am. I've invested all this time and money in the learning program. I can't even get my son to engage. I can't I take the materials out and he won't sit with the same, same and but when you attend the courses, they're like, Oh, well, then you're doing it wrong.   01:13:42:00 - 01:13:43:03 Heather Trammell Yeah, maybe it.   01:13:43:03 - 01:13:58:02 Erin Croyle It is so frustrating because especially as mothers, I think we put it on ourselves as if it's our failure and then it does our child a disservice because we're we're like trying to push them to do something that they just aren't there for.   01:13:58:07 - 01:14:29:24 Heather Trammell And begging ourselves up on the way. As parents, you know, think about our friends whose children have Down syndrome and autism together. That cajoling nurses, this very challenging situation. They are doing everything they possibly can to help their children. They love their children. They would want their children to be as successful as they possibly can, but their children might have challenges that other kids don't who don't have a diagnosis like that.   01:14:31:08 - 01:14:58:08 Heather Trammell Let's not beat the parents up. Let's not encourage other parents picking them up and let's not encourage them to beat themselves up either. They are doing the best they can. Sometimes in my parents support experience, I will be perfectly honest with you. And there are some parents I find very frustrating to talk to. Go figure. Sometimes I do everything I can to make the best suggestions possible and I don't see them pick up on it.   01:14:58:19 - 01:15:23:13 Heather Trammell They don't move forward with any of the suggestions that I took a lot of time to pull together for them. And I do find that very, very frustrating. But they really still are doing the very best that they can. I think of some families where they don't have a lot of margin. You've heard you've heard the phrase about margins.   01:15:23:13 - 01:15:47:22 Heather Trammell Maybe you've read the book. I have a certain amount of margin in my life. We are a stable family with stable finances. I am not in danger of the lights being cut off. I'm not in danger of food not being on the table. I have margins that way. There are some families that don't have those margins. They have their finances are extreme and we take they are food scarce at the end of the month.   01:15:48:04 - 01:16:07:11 Heather Trammell Maybe their children experience more difficulties than my children do. Their margins are a little bit smaller. And so even when I have frustrating conversations with parents or frustrating situations and I'm like, I don't know what else I can do to help this parent, I have to realize that they are doing the best that they can with the margins that they have.   01:16:08:01 - 01:16:22:11 Heather Trammell And sometimes when children struggle more, when they have more high support needs, our margins might be a little bit smaller. And I think we need to recognize that and still celebrate that person and support that parent.   01:16:23:24 - 01:16:26:22 Erin Croyle Yeah, and support that parent maybe even more so.   01:16:26:22 - 01:16:27:12 Heather Trammell Yeah, even.   01:16:27:12 - 01:16:33:00 Erin Croyle More. And it's that analogy is interesting because I think about how our margins shift over time. You know.   01:16:33:03 - 01:16:33:17 Heather Trammell They do.   01:16:33:17 - 01:16:35:15 Erin Croyle You have aging parents, and you have to help them.   01:16:35:16 - 01:16:36:18 Heather Trammell True.   01:16:36:20 - 01:16:39:18 Erin Croyle Right. Or loses a job or.   01:16:39:24 - 01:17:01:17 Heather Trammell Yeah my margins were a lot smaller last school year than they are going to be this school year. My children had educational needs last year. That just took a lot of time for me, lost a lot of sleep over it. What about peace? Enjoyed stress free living. So last year was not my best year and I had to drop out of my gym classes.   01:17:01:22 - 01:17:32:09 Heather Trammell I love my gym classes very much, but because my family needed me, I had to cut loose some stuff. So my margins were a little bit smaller last year. I'm looking forward to them being a little bit bigger this year. That'll be great. But when my family needs change, I change with them. If I did have a health care condition last year or any time, if the main breadwinning parent dies or something, your margins change and they would naturally change.   01:17:32:09 - 01:17:56:05 Heather Trammell If your child's struggles were different one year than they were to another year too. So again, that's what, you know, the whole high functioning, low functioning discussion is so boxy that it doesn't allow for any changes. We've just categorized them. Poof, you are high functioning, you know, And then they they never can change. They can never, never get out of the box.   01:17:56:22 - 01:17:57:20 Heather Trammell I find that difficult.   01:17:58:11 - 01:18:15:12 Erin Croyle Yeah. And I think it's rooted in able ism. I think about right through. Yeah. When my son was young and I was seeing the geneticist and specialist and driving him in there. Yeah, I remember before knowing how terrible the term is, asking what you think he'll be high functioning and like.   01:18:15:12 - 01:18:15:22 Heather Trammell Really.   01:18:16:07 - 01:18:23:06 Erin Croyle Clinging on to that. And then in the Down syndrome community, we have these amazing figures like David Egan in.   01:18:23:06 - 01:18:23:19 Heather Trammell Yeah, true.   01:18:23:22 - 01:18:27:05 Erin Croyle Frank Stevens and all these other amazing people.   01:18:27:14 - 01:18:28:00 Heather Trammell They are.   01:18:28:01 - 01:18:40:03 Erin Croyle And that is a true inspiration. You know, I had my son and I got to meet these people and, you know, David's of friends and yeah, but in my mind I was like, Well, that could be my son.   01:18:40:17 - 01:18:41:01 Heather Trammell Right?   01:18:41:06 - 01:19:06:15 Erin Croyle But those are my dreams. And it's become clear that one, those are my dreams, right, too. Not every kid can get a standard diploma if they have Down syndrome. And fighting for that, it puts pressure on you as a parent, but also pressure on your child that maybe we need to rethink our dreams as a parent and look at who are kid is, right.   01:19:07:10 - 01:19:37:05 Heather Trammell Oh, you think? Yeah, maybe we do, you know, And I think that I think that's part of a real challenge when you're when your child is very young enough, is to be chasing those things down, chasing down your dreams rather than their dreams. And to have have a vision in your mind about what you want. And you will not settle for anything less than that.   01:19:37:23 - 01:19:56:06 Heather Trammell Nothing will change that. I'm not saying that some of us don't have deeply held values and convictions, that we like it that way, and we are going to keep it. You know, people who have faith convictions, they are not going to think they love God the way they love God and they plan on changing that. And and I'm one of them.   01:19:56:23 - 01:20:29:08 Heather Trammell But I think people change. And so I want to appreciate the fact that my daughter daughter's plural, will change throughout their lives. And they're not a little box. And I could have had a dream that my older daughter would get a scan their diploma, but she did not get a scan or diploma. Well, what happens to me then, if your child doesn't reach X, Y, Z level of high functioning, what will happen to you?   01:20:30:04 - 01:20:58:08 Heather Trammell Will you fall apart? Will you blow up into a thousand pieces? What will happen to you? I appreciate parents going for the gusto, especially when their children are young. You don't know what your child is going to accomplish. Go for it. Live it up and go for it. And if it changes, change with it. Ask yourself what's going to happen if you don't get X, Y, z?   01:20:58:21 - 01:21:10:12 Erin Croyle What kind of person will you be? It's a good question to ask as we pursue the high functioning path. If that's the path that matters, keep my dog. I love my dog.   01:21:11:04 - 01:21:31:22 Erin Croyle I love my dog. I love that you just said that. You've put it in such a perfect way to go for it when they're kids. But I also want to touch on the predatory businesses I think about. I don't know if this speech pathologist is still marketing certain tools, but I think.   01:21:31:22 - 01:21:32:11 Heather Trammell About.   01:21:33:12 - 01:21:43:11 Erin Croyle This program where there were tools to use, and this would help with the low muscle tone, and your child will speak clearly and come to our seminar and buy the tools. It's $900 a person.   01:21:43:17 - 01:21:47:21 Heather Trammell Exactly. And then the tools are $500, right?   01:21:47:21 - 01:21:56:13 Erin Croyle Yes. And then you go and you spend this money and then your kid's still not doing it and you blame yourself. And there you are as a family, stressing out.   01:21:56:16 - 01:21:57:06 Heather Trammell Right.   01:21:57:12 - 01:21:59:02 Heather Trammell And you have money left for vacation.   01:21:59:02 - 01:22:29:22 Heather Trammell Right, right, right. I share your concern here. And predatory is not and is not a bad word. Use that. That's pretty well said. Predatory. If it is so good, if it's just the bomb dot com therapy and really every child should do this, then what about my parents who have financial needs? What about low income families? Families who don't speak English as a first language?   01:22:30:12 - 01:23:00:12 Heather Trammell Can this program be implemented? If I have two children or 12, can I implement this program as a single parent? Can I implement this program with a not so cooperating co-parent? Will this program be effective if school doesn't do it? If I'm the only one doing it predatory? If you don't buy my product, do my thing. Your child is not going to do well.   01:23:01:18 - 01:23:27:09 Heather Trammell Oh, I can't tell you how disappointing I hear that that is just really, really crushing. And you make such a good point. It's like, well, now you have no money left over for vacation. Now you are sick. It’s mortgaging your house on the thought that your child might respond well to this thing, whatever it is maybe your child does.   01:23:27:19 - 01:23:38:24 Heather Trammell But then again, maybe they go right. What happens if they don't? Now you second mortgaged your house. You have quit the job you love. Well, blood work that matters to you so much.   01:23:39:18 - 01:23:57:15 Erin Croyle Yeah, it's really harmful. And you see it a lot. And I think it's a societal thing where we see disability and we either want to overcome it. Yeah, we want to fix it, but we have yet to just accept it and let people be who they are.   01:23:58:02 - 01:24:08:11 Heather Trammell Correct. Correct. I'm sure you saw this YouTube video years ago. The name of it is called Freberg. Ring a Bell for You?   01:24:08:11 - 01:24:09:13 Heather Trammell Sounds familiar.   01:24:09:13 - 01:24:35:07 Heather Trammell Okay. If you if you see it, it's an animated saying follows the life of a baby with Down syndrome all the way until they're an adult. At the very end of the video, they have these little snippets of people with Down syndrome. Again, it's animated, but they are real people. They have a caring Gaffney in there and they have the phrase says free to be got got it.   01:24:36:03 - 01:25:06:20 Heather Trammell And then underneath they'll say, Mary, for 25 years, free to be a guy, which is caring. Gaffney has a free to be and the guy and there's there's a couple of different scenarios The very last person that they showcase in that little video is it says Free to be. And then parentheses never learn to speak lived in his his small community all his life.   01:25:08:05 - 01:25:37:05 Heather Trammell So basically he can grow up to be like, amazing. Like whatever we think the high functioning amazing is. And then the video takes that phrase where it says free could be dot, dot, dot, and it takes out the dots until there's one period. Free to be, just free to be. Hmm. Wouldn't that solve the high functioning, malfunctioning question if we were all just free to be, period?   01:25:37:14 - 01:26:05:17 Heather Trammell Not free to be and then fill in the blank? Yeah, You. I mean, Americans are like this. We think anything can happen, right? Western thinking is just like this. But I think just to be just be without being amazing, without being what the world thinks is amazing. What America thinks is amazing, what Indonesia thinks is amazing. Just be I love that video.   01:26:05:17 - 01:26:10:03 Heather Trammell I highly recommend it to Everybody is called Free Bird.   01:26:10:05 - 01:26:37:05 Erin Croyle I'll make sure I put the link in the description. And I love that idea too, because I think about different people, whether disabled or not. And high functioning, low functioning. Let's think about just who you are as a person. We're all good at some things and not so good at others. And for and so some people are exceptional and there we see them in politics or on a national global scale.   01:26:37:17 - 01:26:47:08 Erin Croyle And then some people are just really, really good at being a good community member or really good at playing pickleball or, you know, whatever.   01:26:48:09 - 01:27:16:02 Heather Trammell What if Beth Trammell, if nobody ever knows Beth Trammell beyond Central Springfield, Virginia. Mm hmm. That's it. Let's say she always lives in central Springfield. She never writes a book. She does not go to university. She doesn't get married. She's not on anybody's blog or podcast. What if what if she just lives a quiet life in her community?   01:27:17:07 - 01:27:37:11 Heather Trammell Is that a bad thing? Well, if I ask you American, that I mean, we all want to be like so accomplished. Accomplishments are very big in America. That's why we want our kids to go to top colleges and stuff like that. That's why we push them so hard in high school so that they'll have great college entrance recipes and stuff like that.   01:27:38:13 - 01:27:43:24 Heather Trammell We do it to our typical kids as much as we do to our kids with disability. The outcome is not better.   01:27:45:09 - 01:28:05:14 Erin Croyle No, and I think about programs like Think College, where you can send a child with an intellectual developmental disability to school, to live on campus, to do the things. Yep, it's incredibly expensive. And when they get out, there's no guarantee for a job or rec.   01:28:06:12 - 01:28:39:17 Heather Trammell Correct? That is true. If even if we spend all the money on the therapy and the therapy tools and we a we die on the hill of inclusion all the way through their high school graduation, they're still going to have Down syndrome. They're not going to stop having Down syndrome. And society will not evolve that fast, that our individuals with Down syndrome really will be afforded all the same opportunities as somebody without.   01:28:40:05 - 01:29:10:11 Heather Trammell Now, mind you, our society is light years ahead of some non-Western countries. Let me tell you. That's just that's my personal professional experience. Our society does not move quick. We still have a long way to go. Sometimes some of the foreign-born parents that I know who immigrate here, who actually immigrate here purposefully legally to give their children a better life here, are coming from countries where there's like zero.   01:29:10:16 - 01:29:37:11 Heather Trammell There's just nothing, you know, and so something is better than nothing. Sometimes disappointing for them when things aren't magically better or they're magically easier. There's nothing easy about special education. It's a very arduous system. They're disappointed when things don't just magically get better. I think the same thing for all the therapy and stuff that we invest in, we we get disappointed when things aren't magically better.   01:29:37:22 - 01:29:51:03 Erin Croyle They might get better. And I'm glad when they do believe me, but sometimes they might not. What then? Can we just be? Period? Can my daughter just be? I hope so.   01:29:52:21 - 01:30:23:07 Erin Croyle You know, there's still these just embedded ablest ideas in our society. And I think some of that starts even in earlier intervention. I think don't get me wrong, early intervention is one of the best things ever and it should exist and continue and we should support it and do more of it. But I just know in my personal experience how you start early intervention and then you're thinking I need more and you add more therapies on.   01:30:23:07 - 01:30:44:07 Erin Croyle And I found myself just so stressed out. We would do early intervention and then we would tack on some speech therapy to help in the future. And I would be lugging my son and then his little brother would never get a proper nap because I thought I was doing what I had to do for him.   01:30:44:10 - 01:30:57:18 Heather Trammell Through hyperventilation and parenting. All that hyperventilation, Parenting or My child is my project parenting. Yeah, the very, very difficult. Difficult on the family.   01:30:57:18 - 01:31:01:20 Erin Croyle It is. But the medical models really push that still.   01:31:02:01 - 01:31:02:12 Heather Trammell Right?   01:31:02:18 - 01:31:18:18 Erin Croyle And you see a geneticist or whomever and they refer you to a behaviorist and you know, the behaviorist will give you these things to do that are. Yeah, possible unless you're like superwoman.   01:31:19:08 - 01:32:02:13 Heather Trammell Right. Or there's somehow the average day extending 8 hours. Right. Or you didn't have to parent your one, two, three other children or whatever. I hear that often from newly diagnosed parents in my autism circles where the professionals will will recommend ABA therapy every single time. That's the way to go. And then when they contact ABA therapists, if they find anybody that has an opening, and if those people accept their insurance, which is not always true, they're recommending 20 to 30 hours a week of therapy on top of preschool or, you know, enhanced autism classes that they're already going to.   01:32:03:05 - 01:32:23:14 Heather Trammell But when does this little guy get a breach already? I feel really badly about that. And that's, again, I think, to what you said before, looking at disability as a medical model, it has to be fixed. Therefore, we're going to fix it. Some people have benefited from ABA therapy, some people have, but some people have been greatly harmed by it too.   01:32:24:15 - 01:32:43:01 Erin Croyle Yeah, and therapies in general. I just I guess I want to say this because I wish I could go back and give myself a hug in those early years and I still beat myself up now. But, you know, you're supposed to bring Pax cards with you all everywhere you go to help your kiddo speak or.   01:32:43:04 - 01:32:43:11 Heather Trammell To the.   01:32:43:11 - 01:32:54:21 Erin Croyle Beach. Well, I mean, that's the thing. They instead of teaching American Sign language and having that be the standard by having teachers learn it. Yes. Parents want to do all of these things.   01:32:55:02 - 01:32:56:00 Heather Trammell Yes.   01:32:56:00 - 01:33:08:09 Erin Croyle Yeah, I work and then I plans which. Okay, great pro quo is great, but guess what? ASL is better. I don't have to worry about my kid jumping on YouTube. I don't have to charge batteries. It's everywhere.   01:33:08:09 - 01:33:27:01 Heather Trammell It's not going to break. Your kid won't throw it or throw it out the window while you're driving or whatever, right? I mean, yeah, I I've always felt that way about sign language as well, is that I wish more people would use it with my daughter with Down syndrome or at least fake it.   01:33:27:04 - 01:33:27:13 Heather Trammell Right.   01:33:27:21 - 01:33:49:14 Heather Trammell You know, I mean, with all due respect to the deaf and hard of hearing community, I would rather at least see my somebody try by using gestures or something with my daughter takes first of all, it keeps her attention better. And she will certainly be following your directions much better than if you give her a paragraph long essay about what you want her to do, you know.   01:33:49:14 - 01:33:59:24 Heather Trammell And she didn't take it to the beach. She can take it on a plane. It doesn't need to be charged, it won't wear out, etc.. Right. I totally agree. Love it.   01:34:01:17 - 01:34:15:06 Erin Croyle It's really difficult. And I think that it's really damaging for parents to keep having these models of just the best that we see everywhere.   01:34:15:06 - 01:34:15:19 Heather Trammell Yeah.   01:34:16:05 - 01:34:27:09 Erin Croyle Not being able to love your child for who they are. I mean, I know that people love their child, but worse. Why are we trying to fix them? Why aren't we trying to fix society?   01:34:28:11 - 01:34:55:16 Heather Trammell Yep, yep. My younger daughter actually told me that once she was in fifth grade, I think fifth grade. And I said, Well, do you want to go to the IEP meeting with me? No, I want to go. Okay, that's fine. Well, what would you like me to tell them? I'm here to speak for you. And she said, Tell them I'm not broken and I don't need to be fixed like that From a fifth grade autistic.   01:34:56:00 - 01:35:19:08 Heather Trammell I'm like, Bravo, girl. You are my people. I love you. I do feel really heartbroken for my parents who beat themselves up thinking they need to do everything to enhance their child's high functioning. This, so to speak. Have you ever gone to the national conferences, National Down Syndrome, Congress convention?   01:35:19:13 - 01:35:22:11 Heather Trammell I did years ago when it was in D.C..   01:35:22:17 - 01:35:58:21 Heather Trammell Okay. I went when Beth was very little, just a newborn. And I remember meeting other parents and actually being that parent who would walk around the national conference thinking, I need to do this. I think we're not doing this. Oh, my gosh, we're not doing this. You know, And I remember feeling that real anxiety. And I, I caught myself because, first of all, know, my husband and I had already discussed that, you know, we were we're not going to do every single therapy known to the free world.   01:35:58:21 - 01:36:12:07 Heather Trammell We already had that normalize. But I could see the anxiety that it raised in other parents. And it really hurts my heart to see other parents with that kind of anxiety is hyperventilation parenting, so to speak?   01:36:12:15 - 01:36:35:13 Erin Croyle It is. I don't think it's something that the parents can help. I think it's something that we need to change. And I wonder, Heather, with your experience all this time, I'm 13 years into it. You're 20 some years into it. What could we do that's different? We showcase these amazing individuals, but is it a matter of showcasing everybody?   01:36:35:13 - 01:36:41:09 Erin Croyle How can we change? There's perception that everybody has value.   01:36:42:00 - 01:37:21:11 Heather Trammell I'd like to see everybody get involved. So not just the parents. I want to see teachers treat their students like that, like case managers. You service people, employers, everybody would have to get involved. You can't have one segment of society like stepping up their game and the rest of us not. I'd like to see everybody get involved. I think it would take a fundamental change in the hearts and minds of Western American thinking that we just really a disability or no disability.   01:37:21:11 - 01:37:47:19 Heather Trammell We value people with skills. We're all about it. Remember that community college is not second rate college. If your child doesn't go to university, the same for trade school. You know your child has settled just because they went to trade school. This is a fundamental change in American thinking and every segment of American society, we have to be involved in that.   01:37:48:08 - 01:37:51:21 Heather Trammell We have to be we have to rally the troops, so to speak.   01:37:52:02 - 01:37:54:15 Heather Trammell Yeah, just a minute of mind shift.   01:37:55:05 - 01:38:19:14 Heather Trammell A mind shift of everybody. Everybody we have in bulk. So really, we we parents have been on this train for years. I mean, that's why we started the idea, because we were like, well, children, we have a right to go to school. So, yeah, I mean, we've wanted our children to have the best all along, wanted people to accept them all along.   01:38:19:20 - 01:38:41:18 Heather Trammell And we keep having to drag different segments of society along with us. The medical establishment, the educational establishment, the service people. We keep on having to drag people along. It's been very hard. If everybody would get on the train, I think we could make that actually, that would help.   01:38:42:21 - 01:39:12:18 Erin Croyle You mentioned IDEA, which some people say I-D-E-A. So for anyone listening, it's the individuals with disabilities education, which was passed in 1975. But here now, it's still not fully funded. The Americans with Disabilities Act was passed in 1990. We're still not really fully compliant. That mindset shifts. I think part of that happens with representation. So how do we change our representation to represent the full scope of what disability is?   01:39:14:22 - 01:39:38:02 Heather Trammell One of the things that I am going to do this year is that I had invited a grand marshal and a CO grand marshal for our buddy walk. I'm not involved in the Buddy Walk planning except for grand marshal. That's my that's my job for our buddy walk this year, buddy. Walk our big outdoor fund raising awareness festival for our organizations.   01:39:38:04 - 01:40:07:17 Heather Trammell It's really a great, fun time. And I invited a grand marshal who is well known in our area, whose skill development is stratospheric, fabulous individual. Everybody wants their child to be like her. And then I invited a co- grand marshal who has a co diagnosis of autism and Down syndrome, and her remarks will probably be read or will be used for an and augmentative communication device.   01:40:08:02 - 01:40:38:13 Heather Trammell Whatever remarks she shares with our organization on that gate, I've invited her to be on the platform that day because we're not just the high functioning group. We're not just the group that champions the stars. We champion all people with Down syndrome. That's one thing that I am doing. I think we could be giving more airspace to people who just be.   01:40:39:10 - 01:41:31:11 Heather Trammell What if Beth Trimble had a blog and you can see her going to the post-secondary amazing university program in my area? But you saw her going to her favorite youth group activity on Wednesday night or go to church with us on Sunday morning or go to school every day where she receives quite a bit of assistance and school just be well, if there is a blog out there just for that, what if we encouraged and and highlighted those things to our newer families so that they would see the entire spectrum of life with Down syndrome, not just the very highly skilled, capable individuals.   01:41:32:18 - 01:41:33:09 Heather Trammell I love that.   01:41:33:09 - 01:41:37:18 Heather Trammell Heather It would be a great, great way to go. Media goes a lot of things.   01:41:38:03 - 01:41:49:03 Erin Croyle Right? It does. At the grassroots efforts really help the social media. Social media helps because, you know, the networks don't cover this stuff necessarily.   01:41:49:16 - 01:42:12:15 Heather Trammell Yes, correct. Networks like the Homecoming king, I guess, you know, they love that kind of stuff. And I'm not saying that that person deserved to be homecoming king or whoever they were, whatever school it was. And I'm sure they enjoyed that moment. But so did the the kid in the band who's playing the cowbell, did we not We didn't give him any airtime.   01:42:13:07 - 01:42:34:10 Heather Trammell Right. Or my daughter, who will never be in anybody's band anywhere if she's in the stands and her favorite, you play all the music and she will be dancing back and forth for the entire night, I assure you. Right? That's how she rolls with music. She's not going to get a video spot on the NBC that night.   01:42:36:10 - 01:42:41:14 Heather Trammell Why don't we ask ourselves why that is? Do we ever ask ourselves why is that? No right?   01:42:41:23 - 01:42:43:22 Heather Trammell I have a theory of why that is.   01:42:44:12 - 01:42:45:03 Heather Trammell What's your theory?   01:42:45:03 - 01:43:00:17 Erin Croyle Tell me when we post the homecoming king or we post the kid that makes the basket at the end of the game. We're celebrating the kid with a disability. Sure, But it's more celebrating ourselves because we helped him do that. And so we feel good about ourselves as a non-disabled.   01:43:00:24 - 01:43:23:18 Heather Trammell Right? It's all about us. Isn't that sad? Isn't that sad? It's one of the things that I emphasize to the volunteers I work with in our parents support program, wonderful volunteers. They really want to, you know, be there to be a mentor, support to new parents and stuff. And have to go through a long training to do that with our organization.   01:43:24:02 - 01:43:44:22 Heather Trammell One of the things that I emphasize a lot throughout the day is it's not about you. This is not about how you feel about Down syndrome. It's not about getting others to feel the way you do about Down syndrome. It's not telling others what you think they need to know about Down syndrome. It's actually listening and being there for them.   01:43:45:19 - 01:44:08:01 Heather Trammell Whatever our new parents are thinking or feeling at that moment, however, whatever non people first language they use, if they have the R word Lacey in their entire conversation, if they're so upset, they can hardly get through a sentence with you. If they just think that the world is coming to an end. That's where they're at right now.   01:44:08:22 - 01:44:24:24 Heather Trammell So listen to them right now. I'm sorry. That doesn't have to do with high functioning, low functioning subject of the day. But those just came up to me that we need to listen to people, listen to all people, regardless of whether they have spotlight activities or not.   01:44:25:19 - 01:44:47:03 Erin Croyle And I think, too, we have to remember that the people that we're seeing who are doing the public speaking and out in front, they communicate in a traditional way. If we made an effort to communicate with other people who don't communicate traditionally, we would hear some amazing things from those people as well.   01:44:47:20 - 01:44:59:13 Heather Trammell You would. You would. And we need to hear those people much more often than we do or have whatever they're trying to tell us translated so that the rest of us can understand. Yeah, agree, agree.   01:45:00:02 - 01:45:16:00 Erin Croyle And keep in mind, too, that a lot of the people who are speaking and are able to communicate traditionally they're getting assistance in in writing those and in practicing. So there's no shame in anyone getting assistance, in communicating in the way that they do.   01:45:16:05 - 01:45:43:19 Heather Trammell I mean, I think we forget that. I think that some of the local self advocates that I know who have done a lot of speaking from the platform keynote presentation, etc., they get a tremendous amount of help from their families to create those presentations. They're reading those presentations. They didn't memorize those presentations. They're reading them because they wrote them already and they had help writing them, right?   01:45:43:19 - 01:45:49:05 Heather Trammell Yeah, absolutely. We all still need support. We all do. Good grief.   01:45:50:07 - 01:46:03:18 Erin Croyle Everybody. The president of the United States has good writers, so let's do that. Some things. Heather, I have kept you for so long. Is there anything you want to add? I could talk about this forever, so.   01:46:03:20 - 01:46:14:04 Heather Trammell Oh, I could talk with you about anything for hours. Same thing now. We covered a lot of really good stuff, Erin. Thank you.   01:46:20:24 - 01:46:35:07 Erin Croyle And thank you listeners for joining us. We're just getting started and cannot wait to bring you more. Please rate review and share and tell us what you want to hear. We've got tons of topics in the pipeline.   01:46:35:10 - 01:46:44:07 Erin Croyle And are always welcome to ideas. This is the Odyssey Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.    

When you have a child with a disability, you become more than just a parent. You become a caregiver. And many of us “parent-caregiver hybrids” have a lot to learn about supporting a child with a lifelong disability.    Medicaid waivers can be one of the hardest things to understand. Under broad federal guidelines, states can develop home and community based (HCBS) waivers to support people who want to live at home or in their community; “waiving” the option of living in an institution. These HCBS waivers are offered by nearly all states and Washington DC. The shift to community based living and person-centered care is an ongoing process. As is phasing out state-run institutions that are still operating in more than 30 states.     Waiver programs vary greatly when you cross state lines. You can find more information about each state on the federal medicaid website.    While Virginia offers multiple Medicaid waiver programs, the two most commonly used by people with intellectual and developmental disabilities are the Developmental Disability Waiver or the “DD Waiver” and the Commonwealth Coordinated Care Plus Waiver or the “CCC Plus Waiver.”    Like institutions, waivers deserve a podcast of their own. The Virginia waiver system is complicated and subject to change. The My Life, My Community website has more information and helpful links. The Arc of Virginia has an in-depth and easy to understand breakdown of Virginia Medicaid waiver programs that is updated regularly. And the Center for Family Involvement has 1:1 informational and emotional support with staff that focuses on the nuances of Virginia waivers and can walk folks through what can feel like an endless maze. If you’re not in Virginia, Parent to Parent USA can connect you with supports in your own state to help you understand the systems there.    Bottom line: waivers are a crucial component in accessing the supports needed to live independently. It’s critical for parents to understand them; and if a waiver is needed, prioritize applying for one. That’s because the waitlist is long. More than 14 thousand Virginians with disabilities are on it. Many of them have been on it for years. Which brings us to the heart of this episode: help and hope for people who are on that waitlist, and for their families.    The Individual and Family Support Program or IFSP provides funds for those on the Virginia waiver wait list. But you have to apply. That’s why we brought on IFSP Support Coordination Supervisor Rhonda Gaines and Program Manager Heather Hines to explain more.    SHOW NOTES:   IFSP Call Center Monday-Friday 9:00am - 4:00pm: (844) 603-9248 My Life, My Community   IFSP Resources   For more IFSP Council Information email and to apply: ifspcommunity@dbhds.virginia.gov   Facebook Pages for IFSP Councils: https://mylifemycommunityvirginia.org/taxonomy/mlmc-menu-zone/connect-ifsps-regional-councils             TRANSCRIPT: 01:00:07:17 - 01:00:34:18 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down's syndrome in 2010. Not only did I have to learn how to be a mom, I had to educate myself about how to support a child with a lifelong disability.   01:00:34:20 - 01:01:04:16 Erin Croyle Medicaid waivers were and still are, one of the hardest things to understand. Under broad federal guidelines, states can develop home and community based waivers to support people who want to live at home or in their community, waiving the option of living in an institution. State run institutions are still operating in more than 30 states. These HCBS waivers are offered in nearly all states and Washington, DC.   01:01:04:18 - 01:01:29:14 Erin Croyle The shift to community based living and person centered care is an ongoing process, and waiver programs can vary greatly when you cross state lines. I'll provide more information on waivers in the show notes. While Virginia offers multiple Medicaid waiver programs, the two most commonly used by people with intellectual and developmental disabilities are the developmental disability waiver or the DDD waiver and the Commonwealth Coordinated Care plus waiver or the CCC plus waiver. The Virginia waiver system is complicated and subject to change. I'll put more information about Virginia waivers in the show notes as well. What is important to know is that for many people with disabilities, waivers can be crucial for accessing the supports they need to live independently.   01:01:54:09 - 01:02:19:13 Erin Croyle It's critical for parents to understand them, and if a waiver is needed, prioritize applying for one. That's because the wait list is long. More than 14,000 Virginians with disabilities are on it. Many of them have been on it for years. Which brings us to the heart of this episode. Help and hope for people who are on that wait list and for their families.   01:02:19:15 - 01:02:39:14 Erin Croyle It's called IFSP, which is short for individual and family support program. And joining me today to break it all down are IFSP Support coordination supervisor Rhonda Gaines and program manager Heather Hines.   01:02:39:16 - 01:02:50:08 Erin Croyle Hello and welcome. Although our focus today is on funding and counsels. Heather, can you take a moment to tell us a little bit about all four service components of IFSP?   01:02:50:10 - 01:03:24:16 Heather Hines Yes. Thanks, Erin. It's great to be here. We really appreciate you giving this program some attention. We are part of the individual and family support program, as you said, IFSP, and that is part of the developmental services Division within the Department of Behavioral Health and Developmental Services. So IFSP will try to stay away from the acronyms. But yes, we'll be talking a lot about the funding program today and our state and regional councils.   01:03:24:18 - 01:03:56:02 Heather Hines But we do have multiple components of our program. I want to tell you a little bit about this. Our primary goal is to provide supports and resources to individuals regardless of their age and their families who are waiting for a waiver slot. You did a nice job of describing what that is a little earlier. We recognize, first of all, that if you were on an 80 waivers waitlist just by the fact that you're on that waitlist, you have significant needs.   01:03:56:04 - 01:04:24:20 Heather Hines So the level of urgency may vary from person to person and family to family, but we know that there is not a single person on that waitlist sitting around filling their fingers and saying, oh, life is easy. We also understand that navigating the system, the DD system, and knowing where to go for resources can be overwhelming. We also know that many families feel isolated and might not know anyone else going through what they're going through.   01:04:25:01 - 01:04:45:13 Heather Hines Feeling alone, not knowing where to go, not knowing what to do next is a lot. And so it's exciting to be part of a team that can hopefully, as you said, bring some help, bring some help to those families and to the individuals while they wait for that funding. A little bit more about the different parts of our program.   01:04:45:15 - 01:05:11:15 Heather Hines So, as you know, Erin, we have a partnership with your team, the Center for Family Involvement, and we fund some of the work that you all do to support families. And we truly believe that family mentoring is extremely valuable and that families deserve to be able to talk to someone who has been where they are and can provide that emotional support while also helping them figure out what to do, where to go next.   01:05:11:17 - 01:05:50:17 Heather Hines And that is wherever they are on their journey. Our partnership with VCU is very important. It also includes LEAP training, which stands for Leadership for Empowerment and Abuse Prevention training. We're excited to partner with you on that. Another partnership we have is with The Arc of Virginia, and that is to provide peer mentoring opportunities. Peer mentors are people with developmental disabilities who are hired, trained and paid to provide guidance and support and resources to other people with developmental disabilities to help those people achieve the life that they want.   01:05:50:19 - 01:06:11:17 Heather Hines Peer mentors are dedicated to helping others reach new levels of independence and inclusion in their communities. Then we have our community coordination program that supports community action and engages individuals and families through our regional and state councils. And you will hear when Rhonda gets to talk a little bit more, she'll tell you a little bit more about those.   01:06:11:18 - 01:06:40:05 Heather Hines We also have a partnership with Senior Navigator, which provides education information and general referrals through the My Life My Community website. I'm sure you're going to have links to that website in your show notes. Some families may have used this website for reference to my life, my community website, the IFSP resource for Family page, A specifically for families, individuals who are looking for resources, waiver, non waiver, anything goes here.   01:06:40:05 - 01:07:04:07 Heather Hines But we just want to make sure people have information that is important to them in one place and folks need help navigating the system or finding services support. There's actually a call center that we have with my life, my community. There's a toll free number that maybe we can add in your notes as well. Anyone can call and speak to a live person between nine and four on Monday through Friday.   01:07:04:09 - 01:07:31:05 Heather Hines So that's a great partnership as well. We encourage families to check out that website and we hope it's helpful for folks. And then we have a communication component. We have a monthly digest that we put out to individuals and families targeting, again, primarily people that are on the DD waiver waitlist. But it's really for anyone that's interested and trainings, events, resources, usually low cost or free.   01:07:31:05 - 01:07:43:03 Heather Hines That's one of our roles. And we have annual messaging that goes out to everyone on the waitlist, social media presence and a lot more. So there's more to IFSP than funding.   01:07:43:05 - 01:08:08:22 Erin Croyle There is a lot more. And those partnerships you mentioned, I know all of us at the Center for Family Involvement and the Partnership for People with Disabilities, which CFI falls under. We care deeply about helping individuals and families and many of us are those families. We have lived experience and we know how hard this can be. We want to make it easier and we collaborate with our community partners, such as The Arc of Virginia to do that.   01:08:08:24 - 01:08:17:15 Erin Croyle Of course, we realize how important the funding is to families. So let's turn to that now. Tell us more about the IFSP funding piece.   01:08:17:17 - 01:08:48:03 Heather Hines So the IFSP team administers this funding annually. It is one time for fiscal year, not calendar year. So that's one time between July and June every year. The funding portal opens for application for 30 days, so it opens Monday the 16th and is open for 30 days, closing on November 14th at 5 p.m.. The funds are allocated by the General Assembly and are intended to enhance or improve an applicant's quality of life.   01:08:48:05 - 01:09:16:10 Heather Hines Promote their independence and of course their continued residence in their own home or in their family's home. To be eligible, the applicants must be on the DD waivers waiting list, and they also must be living at home or in their family's home. Those are the two main criteria. Now, who can apply is the individual who's on the waitlist themselves or what's called their custodial family member.   01:09:16:11 - 01:09:38:15 Heather Hines I'm not a fan of that term. That's not the most person-centered term, but that's what's in the regulations. So that's why we use it, because I don't want to confuse anyone. And what that means is it can't just be any family member. So it's a family member who has primary authority to make all major decisions affecting the individual and with whom the individual primarily resides.   01:09:38:17 - 01:09:50:18 Heather Hines That's just to be clear, those are the only two people that can apply is the person or their custodial  family member. I can tell you a lot more about it, but that's the gist of what the program is.   01:09:50:20 - 01:10:13:20 Erin Croyle So I want to talk about the application process for the IFSP and for funding. In the past it was a first come, first serve basis, which, if memory serves, could be a really chaotic 24 hours for applicants and plus the lead up time to that deadline. You know, it was really stressful just getting online and having poor Internet or Internet lag.   01:10:14:00 - 01:10:25:20 Erin Croyle It could be messy, but that's over now, right. And now it's a combination of priority and lottery. I know this can be complicated to explain, but can you give us the basics about these changes?   01:10:25:20 - 01:10:49:10 Heather Hines SURE. So now what we're doing is basing how we distribute the funds on urgency of need or what's called risk of institutionalization. So you mentioned earlier when you were describing what a waiver is. Again, it's waiving someone's rights to an institution. That's where that language comes in, is we want to make sure that it's going to the people with the highest level of need.   01:10:49:12 - 01:11:10:07 Heather Hines And again, yes, we wanted to make sure that everyone had access to it so that it is fairly distributed. And when it was first come, first serve and may have unfairly benefited people who were already more connected to resources and easy access to a computer, for example. And so we wanted to make sure that everyone had the same access.   01:11:10:07 - 01:11:32:00 Heather Hines And so that's why it runs for 30 days. So everybody has time to get the information, to find out about it and to get to a computer and be able to apply and get the support they need to be able to apply amounts that applicants can request now is based on a funding category. The funding categories are based on each individual's priority status on the waitlist.   01:11:32:00 - 01:11:57:23 Heather Hines So go to the CSB, get on the waitlist. When you meet with the case manager or the intake staff, they do some assessments based on a bunch of questions that they ask. They find that you need a certain priority criteria. So there's probably one, two and three are you. One is the highest level of needs. That's the folks that have the most complex needs and what we would consider the most at risk.   01:11:58:00 - 01:12:19:16 Heather Hines Those individuals are the top priority for the funding as well. So they're the top priority in order to get a waiver. So they're top there on the waiting list and they're also top priority for getting the IFSP funding. That is the annual funding. If they apply, 50% of the funding goes to those on priority one. The way we determine who gets it is based on their critical needs summary Score. Again, that's something that's common with your CSB staff case manager and they ask questions on the form and there's a score attached to each person that tells how urgent their needs are within that priority one category. Funding approval is given to individuals and priority one who are most at risk of institutional elevation. As I said, highest level of need indicated by that critical needs summary score.   01:12:49:23 - 01:13:18:07 Heather Hines So funds will be awarded to those with the highest critical need. Summary score. Until there's no funding left for that category. Families don't need to know what their score is before they apply. We have access to all of that information. They do need to be staying in touch with the CSB, with their case manager, if they have one, to make sure that their information is current and accurate in the system, because that's where we get the information when we're making our determinations for funding.   01:13:18:09 - 01:13:43:18 Heather Hines We'll stay in touch with that case manager. So something changes in your life. They know what it is and they can update your priority. So maybe you should be priority one, but you forgot to tell them that a primary caregiver had a new situation. And maybe something really critical has changed for that person. So then for priority two and three, it's done a little differently for people that are on the waitlist and have a priority two or three status.   01:13:43:20 - 01:14:06:02 Heather Hines Funding is given randomly to those applicants. So it's like a lottery system; this many people for priority two and three have applied for funding and then it's basically randomized because not even Rhonda or I that do it, someone gives us numbers and names attached to those and it's totally random. So we give funds to those people until we run out for that.   01:14:06:04 - 01:14:30:11 Heather Hines One thing to note, though, is that if you have a priority two or three status and did receive funding during the last funding cycle, you can still apply this time. But we're awarding funding first to those in priority two or three who did not receive funding during the last cycle. If there is funding left, then those who received funding last cycle will be considered again.   01:14:30:12 - 01:14:50:12 Heather Hines That's to make sure everybody has a chance. Over the three years I didn't get the randomization last time. Maybe I'll be more likely to get it this time. We want as many families as possible to have access to the funding. We want those with the highest level of needs to have access. So this is our way of trying to do all of that with a limited amount of funds.   01:14:50:14 - 01:15:19:18 Erin Croyle That's really helpful. And I just want to also say when you're reaching out to your community services boards, if it's something you haven't done before, just know that they're regional, county, city based and sometimes you really have to go through a phone tree to get to someone who knows about waivers and programs. So be patient. And again, if you need help, you know, see if I can help you navigate getting through to your CSB, because depending on where you live, it can be a complex process until you get to someone who knows what you're talking about.   01:15:19:20 - 01:15:34:20 Erin Croyle I want to know how many families are able to get some financial relief from this program if we're talking 14,000 on a waiting list. How many do you see apply typically? And then how many do actually get funds and how much money are you talking here?   01:15:34:22 - 01:16:12:15 Heather Hines The total amount available, this funding period, as well as back in January, February, each time it's been $2.5 million. So that's the total. During the winter of 2023, applications were submitted for every $3 million. We could only award 2.5 million, but that meant that we were able to approve 3770 applications. So that's 3770 individuals or families that received funds, almost 4000 people, which is great, but obviously not close to 14,000, as you said.   01:16:12:17 - 01:16:39:06 Heather Hines But with limited funds, it's good to see that many people getting something. We expect that number to be about the same this fall since we again have 2.5 million and the amounts for priority have not changed. So we are thinking, let's see, last time the total number of people that applied was 4914, as I said. And then the number that were approved was 3770.   01:16:39:06 - 01:16:59:23 Heather Hines So that 77% of people who applied were able to receive funds. If we get more applications this year, which it's looking like it might, the percentage will be lower. But we would think that the total number would be about the same. Getting close to 4000 individuals or families would get funding.   01:17:00:00 - 01:17:04:06 Erin Croyle How much money do families typically get when they apply?   01:17:04:07 - 01:17:21:22 Heather Hines If they're on priority two and three? They couldn't get more than 500. So you can ask for less than 500, but you can't get more than 500. Then for priority one is 1000. You can't get more than 1000, but you could get less if you ask for less than we had people that have asked for half of that.   01:17:21:22 - 01:17:33:22 Heather Hines But typically most people, when you look at the types of things that you can apply for, usually there are several items that people add together to make up to get up to that 1000 or to that 500.   01:17:33:24 - 01:17:46:15 Erin Croyle Well, let's talk about what they apply for. These funds are meant to help individuals and their families dealing with complex needs and that are at risk for long term care. So what do people tend to use the money for?   01:17:46:17 - 01:18:09:13 Heather Hines Like we were just talking about $500, 1000. It is not life-changing. We recognize that in terms of addressing complex needs, it's not a lot, but it does provide a certain level of financial relief for families to obtain items or services that at least help in the short term or some life stability or to get the basic need met.   01:18:09:14 - 01:18:37:14 Heather Hines The categories that the funding is allowed to cover are improved health outcomes so that something like therapies, medication and co-pays that are not covered by insurance. This funding cannot be used for anything if there is another funding source that covers it. So if you have a CCC plus waiver and it covers the service, you can't then use that IFSP funding for that.   01:18:37:14 - 01:19:04:08 Heather Hines That's one of the rules and regulations. So again, improved health outcomes on that covers therapies, medications and co-pays that aren't covered by insurance, communication devices, even something like dental care. There's a whole list of items and services that are allowable under that category, and that's going to be something you can get really detailed information about in our guidelines, which you're going to link to that in the notes.   01:19:04:10 - 01:19:44:09 Heather Hines They're safe living categories, so that's anything to help the person stay safe in their home, such as furniture, handrails, appliances, ramps, stairlifts. There's again, a long list of items under that. Those are just a few examples. Community integration, that's the third category. So something to help someone be part of their community covers a lot of different things like companion services, transportation services, recreational opportunities, even modifications to a vehicle so that someone can go into their community and participate in the world.   01:19:44:11 - 01:20:18:16 Heather Hines There's a lot of different options under there. Another thing about funding, we have multiple tools to help people with the application process. We want to make sure that when you go on to apply, you have everything you need to make it go smoothly and make it go quickly. On our My Life, My Community Resources Funding Page, we have a two page quick reference guide a video tutorial, a full user guide, a list of frequently asked questions and answers, all to help families to get the help that they need.   01:20:18:16 - 01:20:22:06 Heather Hines And several of those documents are also available in Spanish.   01:20:22:08 - 01:20:46:14 Erin Croyle Before we move forward, I do want to clarify, because I'm not sure if I said or you said; and it's so confusing for everyone. You can have the CCC plus waiver while you're on the DD waiver waitlist. And it's actually a good thing to apply for because that would then give you Medicaid, which can help with the co-pays. And it sounds like most of the funds that people apply for are those things that they would get if they had the DD waiver.   01:20:46:14 - 01:20:58:00 Erin Croyle So environmental modifications, adaptive tools and support with with respite and all sorts of things that are why people are looking for the DD waiver.   01:20:58:02 - 01:21:01:09 Heather Hines Right. Exactly. Really good point.   01:21:01:11 - 01:21:27:21 Erin Croyle The other thing I want to point out is that the job that you do, I may be projecting here, but I feel like you care deeply. Anyone who thinks like this isn't enough money or why can't we serve more people? Nobody here on this podcast can do much about that. But if you connect with The Arc of Virginia, they actually do advocacy work and have a day where they go and see the General Assembly in the early parts of it's usually January, February.   01:21:27:23 - 01:21:49:03 Erin Croyle So that's where you advocate to try to change this. You know, the people here are just doing the work, but if you want to help change things and move them along, I highly recommend connecting with The Arc of Virginia and they always want more voices to speak to our legislators to help them understand how important funding these initiatives are.   01:21:49:05 - 01:22:04:10 Erin Croyle Let's talk about the data breach in 2019 and then again in 2021. There was a data breach on the IFSP portals where parents were applying and individuals were applying. What's being done to ensure that that doesn't happen again?   01:22:04:12 - 01:22:33:07 Heather Hines A data breach did occur. Those two years. Rhonda and I joined the team last summer and we've been part of the course correction and that has been to use a trusted and reliable application portal. Some people may have heard of WAM. It's also called the waiver management System. That is a system that has already been used by the Department of Behavioral Health and Developmental Services.   01:22:33:09 - 01:23:04:18 Heather Hines It's the same place that people on the DDwaivers waitlist go for their annual forms that they need to fill out. If someone is on the DD waivers waiting list, then they may already know about this spot of the waitlist portal or the IFSP portal. The funding portal is what was developed in preparation for the January and February funding programs. A lot of work was done to prevent future issues.   01:23:04:20 - 01:23:34:06 Heather Hines That were experienced in previous years. There was lots of testing and that was internal testing within the department is also testing with the vendor who we worked with on the WAM system. Over 4000 people applied using that system in January, in February, and there was zero breaches of protected information. So we've had a successful year and our team is available throughout the application process, along with the My life, my community call center staff to troubleshoot and resolve errors. Any time people were applying and had questions that way, everyone had a successful opportunity to get the application submitted. Again, with this launch, the cycle has had no breaches and we're hearing from applicants that they can submit their applications in under 5 minutes. We're hearing from our partners at my life, my community.   01:24:00:19 - 01:24:28:17 Heather Hines Yes, people are calling with some questions here or there, but overall, it's going really smoothly for folks. And we're looking, always looking, to learn more about what's working and not working. So each year that we can continue to enhance the process for everyone and make it easier for people to apply because we want everyone to have an opportunity and we don't want glitches or anything like that to get in the way for this important funding, even though, as you said, people would love for it to be more.   01:24:28:17 - 01:24:46:06 Heather Hines And that's not something that we have control over on this podcast, the three of us. But what we do have control over is trying to make it, make it work and make it work for people to be able to apply easily. So we've been working really, really hard on that and we hope that is felt by people when they complete the application we've mentioned.   01:24:46:06 - 01:24:59:04 Erin Croyle We're going to put all sorts of links in the shownotes, including your FAQ page, but while you're here, what's a couple of frequently asked questions that are the most important things folks should know about?   01:24:59:06 - 01:25:31:18 Rhonda Gaines Well, Erin, outcome in and answer to that question, again, thank you for having Heather and I here today to share information. Some of the most frequently answered questions a comprehensive guide can be found at the My Life My Community website, under Resources for Family, under funding. So I'll just mention a few just for quick reference. A lot of people want to know how long it takes before a funding decision is reached after they submit their application.   01:25:31:20 - 01:26:01:21 Rhonda Gaines In general, once funding closes, we reach out and notify applicants of an award decision within 1 to 2 months. That's after screening and making decisions for those who apply. When you receive an approval for funding or you receive a denial of funding, those decisions will come to the email address that is listed on the application. So you will know one way or the other.   01:26:01:23 - 01:26:41:02 Rhonda Gaines Another question is asked, I need the IFSP application translated into another language. Currently, the IFSP funding portal in WAM has a Spanish translation function. You can see our user guide, again, on the My Life My Community IFC Funding page for instructions on how to translate the application. Another question: Who can help me complete my application? So if you need assistance, you can reach out to your Community Services Board, the assigned support coordinator or intake specialist.   01:26:41:04 - 01:27:07:05 Rhonda Gaines You can get assistance from IFSP utilizing the funding FAQs. You can also access a trusted family or friend to help you apply for funding. We also have a quick reference guide on the My Life My Community web page, under funding. It's a quick seven, eight step guide to get you through the funding process in the most efficient way.   01:27:07:07 - 01:27:35:19 Rhonda Gaines Another question: Can I be reimbursed for things I have already paid for before my award notification was received? Unfortunately, you cannot be reimbursed for items that were previously purchased before you received the funding award. All purchases must take place after the card or the funding is received. I live in a rural area and my wife Fi is unreliable.   01:27:35:21 - 01:28:08:11 Rhonda Gaines I do not have a computer. How can I apply? Is there someone who can help me? All applications currently must be submitted online. In addition to using a computer, now you can complete the application using a smartphone, phone, or a tablet. If you do not have access to any of these devices. Please consider accessing using a computer at a local public library. So that information is general to everyone in the city or county that you live.   01:28:08:13 - 01:28:36:22 Rhonda Gaines And you can access those devices for free. What do I do with my receipt after purchase? Recipients should hold on to receipts for three years. Keep them in your personal records. Don't send them to IFSP. However, be prepared to provide them upon request as part of our ongoing quality improvement process, IFSP may contact recipients to learn more about how they utilize the funds.   01:28:36:24 - 01:29:00:15 Heather Hines And I will jump in real quick to add. Rhonda, you mentioned using the different browsers and mobile. Our vendors made some improvements to the use of the application on a mobile device, but we got to admit it is a little tricky. It's not as user friendly as we'd like it to be. And so you can physically do it on a mobile phone.   01:29:00:15 - 01:29:21:04 Heather Hines But we really recommend using a laptop or tablet just because of the quirkiness of it on the mobile devices. And we have had people that have used their phone to do it, but it's a lot of pinching and resizing things. And so it's not as simple as just saying, Hey, make it available on mobile phone. It costs funds to do that.   01:29:21:06 - 01:29:26:08 Heather Hines We're just wanted to be clear that it's better on the laptop.   01:29:26:10 - 01:29:32:20 Erin Croyle Yeah. And I love Rhonda that you reminded us to use our libraries. It's a resource I think we forget about sometimes.   01:29:32:22 - 01:29:33:24 Rhonda Gaines Absolutely.   01:29:34:01 - 01:29:44:03 Erin Croyle I think it's really exciting that you've started regional and state IFSP Councils. Rhonda, can you explain what these are and how people can get involved?     01:29:45:01 - 01:30:17:00 Rhonda Gaines Sure. This is near and dear to my heart because of course this is the coordination that I provide. Our state and regional councils are a coalition of members and they work collaboratively to build on existing community connections and resources in Virginia. They help to identify service gaps and we make resources, services and support available to individuals and families who are on the waitlist and the community at large.   01:30:17:01 - 01:30:52:14 Rhonda Gaines So that information is shared during our council meetings and on our social media platform. IFSP administers the council component and we also facilitate the work of the Council. We all come together to educate, inform, and encourage our community. I'll make the distinction between what State Council does and what regional council activities are. For State Council, again, they are representative of the five service regions across Virginia.   01:30:52:18 - 01:31:30:22 Rhonda Gaines They all volunteer their time. There is at least one member for each region and those regions are region one is considered Western, region two Northern, Region three south Western, region four Central Virginia, and Region five is Eastern Virginia. Some of the things I do is that they serve as an advisory board to IFSP. They provide feedback on the state goals in an effort to focus on the immediate needs of resources for those who are on the waitlist.   01:31:30:24 - 01:32:00:17 Rhonda Gaines They provide oversight towards progress planning goals. We have some very talented people on our council, so they utilize their gifts, their professional gifts, their personal gifts, their lived experience gifts, and they help us when we're developing questions for survey data. They give us feedback on how certain information is presented in terms of how is it presented in the best language for the community at large.   01:32:00:23 - 01:32:47:07 Rhonda Gaines Their insight to some of the work we do is very critical and some things we just need a different eye before we put the information out to the community at large. They suggest operational enhancements for the current funding component. A lot of our members are also parents. They're individuals with lived experience and they may also apply for funding and they give us their feedback in terms of what that experience was like for them.  And we've actually used their feedback and the public in general, their feedback through our surveys to make some of the enhancements that we have in place this year for this current funding cycle.   01:32:47:09 - 01:33:20:08 Rhonda Gaines DBHDS Staff, along with Virginia Commonwealth University, RNCS ( regional network coordinators) and the Council. Together we recruit, screen and select new council members and we're in the process of starting that now with beginning the application process. And through the end of November, we will screen interview and make our selections for the beginning of 2024. The State Council has four annual meetings.   01:33:20:10 - 01:34:02:07 Rhonda Gaines AppointeeS serve a one year voluntary term reappointment is allowed for a maximum of three terms. So that's all for State Council. Our IFSP Regional Council Leadership Board, they are representatives of five regions across Virginia and they volunteer their time as well. There are at least four members for each of the regions, which I have stated previously. Western, northern, southwestern, central and eastern. The Regional Council operate a little bit different in that they work at a grassroots level to improve the supports in their community.   01:34:02:07 - 01:34:50:09 Rhonda Gaines They come together to identify, develop and coordinate important educational presentations to the community.  And some that we've had this year has been on health care advocacy, disparities and in equities that individuals may face and their families when they go in for health care and emergency care and when they're hospitalized. We have presentations and they give us really good tools, information for family to access so that they can become better advocates for themselves and so that families can also advocate in a better way for the individual. Members, they live in, the localities that they're serving. As part of the makeup and for full representation of our council's,    01:34:50:10 - 01:35:19:05 Rhonda Gaines we have a person who must be a self advocate so that we can always have their perspective, family members, so that we can have their perspectives. Caregivers, community professionals and even providers can be part of our council. The council serves a one year term and reappointment is allowed.  So there are currently no restrictions on the number of terms.  I FSP Council, they work closely in partnership with Virginia Commonwealth University, Center for Family Involvement. Their respective regional network coordinators from CFI are available to help facilitate the activities of council and support in planning and implementation of meetings and events. So our ences work closely with Council to identify and make available resources to their communities via social media. So each region has a Facebook social media page and that's where we primarily share resources.   01:35:54:17 - 01:36:28:08 Rhonda Gaines We share current resources, we share new resources, we share unique resources to that particular region, trying to close a service gap need. They make contact with organizations in trying to develop partnerships and sharing resources and coming together where some of the presentations that we do also direct marketing to other agencies. The RNCS also help council work together to comprise monthly reports and quarterly reports on the progress of council activities.   01:36:28:08 - 01:36:58:07 Rhonda Gaines So we get an opportunity from their perspective to see where they are currently and how they're performing as a council towards meeting our state planning goals and then make recommendations in terms of where they'd like to go next. What is the future planning for state and regional councils? So currently IFSP is recruiting and if anyone is interested, please email us and Erin   01:36:58:07 - 01:37:19:21 Rhonda Gaines you can also include this in your links, but I will state in case someone is listening and want to write it down immediately. It is I-F-S-P community spelled out so it is c-o-m-m-u-n-i-t-y  at D-B-H-D-S dot Virginia spelled out dot G-O-V.   01:37:19:23 - 01:37:35:21 Erin Croyle Rhonda I love hearing about this. It's so important. You know, we always hear representation matters and you have this rich, diverse mix of people on these councils. I am so curious, a couple of the specific bits of feedback that you're getting from these councils.   01:37:35:23 - 01:38:08:02 Rhonda Gaines The most beautiful thing about our council members is their passion and dedication as a whole. They're genuinely interested in being part of something that can make a difference, even if it's just to one person or a family's life. They offer and share their perspective, their lived experience, triumphs and challenges of everyday living for someone with a disability diagnosis, and that helps them help other people.   01:38:08:04 - 01:38:54:10 Rhonda Gaines As self advocates, families who support these are the people that are comprised of our council. They could be a caregiver or professional advising on how to navigate services system. All of these people are critical sources of information and they can help someone who may be feeling like they're on an island and they're not sure what to do. So their feedback and the work that we do is incredibly important for us moving forward and coming up with new ways as much as we can to provide the best services to people who are currently on the waitlist.   01:38:54:12 - 01:39:26:15 Rhonda Gaines Sometimes we get focused on major issues of government, which can take a lot of time to improve our community services systems. But individual schools and their families, they're just concerned about getting through daily challenges. They want to be included. They want good medical treatment, access to employment, education.  And our council, They are resources to help some of those people kind of find their way.   01:39:26:17 - 01:39:53:21 Rhonda Gaines Their mere presence in our service component speaks volumes and adds to the legitimacy of what we're doing. Some of those in the community who participate in our meetings, be educational presentations, they join in on conversations. They seem to feel inspired and reassured that they can find a way to make things better for themselves and for their loved ones.   01:39:54:01 - 01:40:15:07 Rhonda Gaines So the feedback that we receive from councils, the information that they can extend to the community, seems to be the major point of this whole component of what we're working with and what we're offering to the community.   01:40:15:09 - 01:40:45:06 Erin Croyle Yeah, you know, time and time again, one person's experience, it may seem selfish to share it, but so many other people are going through it that if you can help fix it for one person, we know how to fix it for multiple people. I bet it's so beneficial in so many ways. Absolutely. Right. And the fact that you're connected both to CFI and other things, I'm sure some of the issues that might not have to do with IFSP get put up to whoever might be able to help with it.   01:40:45:06 - 01:40:46:21 Erin Croyle Do you experience that at all?   01:40:46:23 - 01:41:20:12 Rhonda Gaines Oh, absolutely. Our council is made up of professionals with a lot of the organizations that we collaborate with, and so we have just this large pool of resources. We can pose a question to our council and someone will say, Hey, I know a person at LEAP or PEATC or the Department of Education, and we can connect with them, or someone sends a question to our support box or to our community box.   01:41:20:14 - 01:41:36:20 Rhonda Gaines We can send that out a particular council member, because on their application we have information in terms of their background, the work that they've done and organizations that they're connected with and it's so easy for us to all of information to help someone.   01:41:36:22 - 01:41:39:19 Erin Croyle I love it. It's just changemakers, right?   01:41:39:21 - 01:41:41:03 Rhonda Gaines Absolutely.   01:41:41:05 - 01:41:52:01 Erin Croyle So anyone interested in this, can you tell us a little bit more about the application process for the councils and also if there's any stipends or reimbursements for travel and child care?   01:41:52:03 - 01:42:27:03 Rhonda Gaines Currently, anyone who's interested in serving on the council and they have the time to commit and a volunteering capacity on state or regional councils may obtain application by emailing us and that email address you can also include in your links. But it's I-F-S-P community spelled out C-O-M-M-U-N-I-T-Y at D-B-H-D-S dot Virginia spelled out dot G-O-V . A member from our IFSP team will respond to your inquiry and tell you more about the application process.   01:42:27:03 - 01:43:11:23 Rhonda Gaines But we're starting now, so we're getting applications ready and we will actively begin recruitment and this will go through November and we expect to have appointments identified the 1st of December so that we can start 2024. Currently, there are no stipends or reimbursements. We're meeting virtually. So it does not require our council at this time to be away from home or find transportation in or have any out-of-pocket expenses currently other than just attending our meetings and communicating through our platforms.   01:43:12:00 - 01:43:21:14 Erin Croyle All the horrors of the pandemic, the one bright light is learning to meet differently. It really, really helps. Participation is so much wider now.   01:43:21:15 - 01:43:22:18 Rhonda Gaines Absolutely.   01:43:22:20 - 01:43:28:04 Erin Croyle Looking to the future. When's the next IFSP funding application period?   01:43:28:06 - 01:44:04:15 Heather Hines Well, we're actually in the middle of it or just began it on Monday, October the 16th. We will be accepting applications for 30 days and that ends on November 14th, 2023 at 5 p.m.. Our goal is to annually have the application portal open in the fall.  So we're thinking around October ish each year. Again, we want to get some feedback from our council on the timing and see what others have to say about if that timing is good for families and individuals.   01:44:04:17 - 01:44:20:17 Heather Hines But right now and in the past it has been in the fall. It just this past year it ended up being early January and February for a variety of reasons. But like I said, our goal is to have it in the fall every year. If that works for people.   01:44:20:19 - 01:44:46:19 Erin Croyle We've got to wrap up here. But before we go, I've got to ask and it's a little strange, but in a dream world, our jobs wouldn't exist. People with disabilities would have the supports they need. There'd be no wait lists. But that's not happening. And we learned today that your job is so much more than just funding. You're looking to support families and hear from families to get them what they need throughout their lives.   01:44:46:21 - 01:44:54:05 Erin Croyle I'm really curious what's your favorite part of the work that you do?   01:44:54:07 - 01:45:22:10 Heather Hines I have a brother with an intellectual disability, so my world has been advocacy for my brother, for people with developmental disabilities since I was born because he's my older brother. So when I found this role last summer, I just thought, Oh my gosh, this is exactly the population that I care so much about. It's not just the individual, but it's their family.   01:45:22:15 - 01:45:42:17 Heather Hines There's all different kinds of families. Some families are really involved. Some families you might not hear from, but like once a year, some people's families have a lot of drama. Some people's families get along great. But no matter what, their family. Professionals are going to come in and out of your life. But your family is always your family.   01:45:42:21 - 01:46:08:08 Heather Hines So we can't provide quality services to an individual without thinking about their family. When we think about person centered services and how important is; family centered services does not mean that we're not focusing on the person. It means we're focusing on the person in the context of their family, in the context of their community, which all of these things are important.   01:46:08:10 - 01:46:33:13 Heather Hines The state government is not going to be able to solve all the problems. And so I'm really passionate about working with individuals and families to help them understand what the government does offer and what is available to them, how to find it so that it doesn't need to be overwhelming so we can do things to make that better for people.   01:46:33:15 - 01:47:14:08 Heather Hines But then also like Rhonda was saying, through the councils, even if we figure out how to get those resources, we still need to not feel alone. We still need to be around other people that we can talk to. We need emotional support, we need community. It's not only about getting that IFSP funding. That's one little thing really, in the grand scheme of things, if the councils continue to grow and strengthen in their coalitions and achieve their goals, that to me means that the quality of life for individuals across Commonwealth will improve because they will know where to go to get information.   01:47:14:10 - 01:47:34:08 Heather Hines They will feel like they have other people that they connect to. They will have access to training, to information. And I just really truly believe in the mission of what our vision is all about, what our team is all about. And so it's really nice to be part of a team where, as you can see, Rhonda cares greatly as well.   01:47:34:10 - 01:47:55:09 Heather Hines We have a communications and program coordinator who is also very passionate and knowledgeable. Between the three of us. It's just been a wonderful experience. I'm just excited to see Virginia come together. Different agencies across the state, different organizations who are all focused on not only this, the individual, but their family making life just a little bit better.   01:47:55:11 - 01:48:17:13 Rhonda Gaines My passion, it must just be a part of my makeup because my desire to care for other people. It started at a very young age and I used to get in trouble because I would take my things and give it to other people that needed things. You know, my my parents would like, you know, why are you giving your stuff away?   01:48:17:13 - 01:48:40:11 Rhonda Gaines My answer was like, Well, because I know I can get more, I can get other things, and I don't know if that person can get another coat or a scarf or whatever. That was kind of I think the foundation in elementary school, you know, and to care about other people, it's just very personal to me. I'm very sensitive about that.   01:48:40:11 - 01:49:31:07 Rhonda Gaines And I am very affected when a certain group or class of people are marginalized and treated, I just want to do something about it. And this field Community Services has been a great vehicle for me to be able to express that in many ways, whether it was direct care or quality assurance or data review. And now in the role of community coordination and working with the councils on the other side of those who are waiting for slots, which can be a very frustrating period of time.  You kind of identify what is it that you can do within your capacity, within your team, within your division, within your agency to try to make a difference for other   01:49:31:07 - 01:50:12:07 Rhonda Gaines people. That's what me, the council and the RNCs - we're working to try to figure out the best way within our power and our capacity to help those who are on the waitlist, who may be incredibly frustrated and at times giving up. And usually if you can provide one thing to give relief there and there's hope that they can keep moving through the process, you know, not just stopping.   01:50:12:09 - 01:50:40:13 Rhonda Gaines Yes, it's work and it's employment, but it's also a passion for me. I don't have children, but I do have two nieces who are on the autism spectrum, and I have a nephew who is on the autism spectrum. And I am quite the advocate at when it comes to services that they need within their educational systems. And I help my brother and my sister.   01:50:40:15 - 01:51:06:05 Rhonda Gaines I guide them with trying to navigate their systems in Kentucky and in Michigan. Unfortunately, all services are not created equal, you know, state to state. But the information I do provide them gives them a certain level of empowerment to advocate at a very high level for their children. And that I feel good about. IFSP in all any of the work I've done in the past.   01:51:06:05 - 01:51:20:09 Rhonda Gaines And what I'm doing currently is generated on a passion to do so.  And want things to do better. Kind of within my little my little power circle, you know?   01:51:20:11 - 01:51:40:05 Erin Croyle Oh my gosh. I mean, both of you, I just I kind of have chills because a lot of times families get in this process and a lot of people that we come across, they don't really have lived experience. They can clock out at the end of the day. And it just doesn't feel like they truly understand. And hearing both of your stories, you do get it.   01:51:40:05 - 01:51:58:24 Erin Croyle You know what we're going through and you understand the hardships and how 500 hundred bucks isn't much at all, but it helps. But also, if we do not have a waitlist anymore and we don't need the application for these funds, you all still have a lot of work to do and I am so glad you're doing it.   01:51:59:01 - 01:51:59:21 Rhonda Gaines Thank you.   01:51:59:23 - 01:52:01:11 Heather Hines Thank you.   01:52:01:13 - 01:52:29:02 Erin Croyle Thank you. And thank you listeners for joining us. Waivers can be a complicated process. Let us know what questions you have and what you might want to learn more about in future episodes. And while you're at it, please rate review and share. This is The Odyssey. Parenting. Caregiving, Disability. I'm Erin Croyle. We'll talk soon.    

The wishes, hopes, and dreams of expectant parents are many.  Their baby having a lifelong disability usually is not one of them.  When that happens, it can be devastating for families.  The staff and volunteers at the  Center for Family Involvement have family members with a disability. Some of us have disabilities. That lived experience makes a huge difference when providing emotional and informational support to people with disabilities and their families. We understand how complicated the mix of grief, joy, disappointment, and gratitude can be. So does Heather Trammell. She's the Director of Family Support at the Down Syndrome Association of Northern Virginia. She took on that role after her first child was born with Down syndrome more than 20 years ago.  She helps parents through the wide range of emotions that flood them after they learn of their child's diagnosis. Heather also sees time and time again, families coming out of the dense fog of grief bursting with pride and happiness.  In this two-part interview, Heather shares how her job has evolved with the rapidly changing media landscape and talks about how toxic the high-functioning/low-functioning mindset can be.    The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    TRANSCRIPT: 01:00:07:18 - 01:00:36:07 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle the creator and host.  The Odyssey podcast explores the turn our lives take when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:36:09 - 01:00:59:17 Erin Croyle This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we tackle the tough stuff, too, which is why I've invited Heather Trammell to join us. Heather knows hard. She too has a child with Down's syndrome. And how the medical team broke the news to her is both shocking and heartbreaking.   01:00:59:19 - 01:01:26:21 Erin Croyle After the dust settled, Heather became the director of Family Support at the Down's Syndrome Association of Northern Virginia. She's one of the first people that parents talk to after they learned their child has Down syndrome. She sees firsthand how drastically different families handle diagnoses. She also witnesses countless transformations from scared, sad and confused to happy, fulfilled and proud.   01:01:26:23 - 01:01:47:15 Erin Croyle Heather's love for her work is palpable. She's the first one to tell you that she's a sucker for a changed life. Heather, I want to jump right in and have you tell us a bit about yourself. But I like to do this a little bit differently because I think a lot of us are one person before children and then another after.   01:01:47:19 - 01:02:04:06 Erin Croyle And for us parents who have a child with a disability, that change is a lot more drastic in advocates like you. To me, it's like a superhero origin story, frankly. So can you tell me who you were before children and who you are now and how your daughter's transformed you?   01:02:04:08 - 01:02:32:15 Heather Trammell Well, I wouldn't call myself a superstar or anything. Thank you so much for having me on the podcast. Erin, it's a pleasure to be with you. It's great to chat with you about any subject at all. So I had my first child when I was 35, so there was a lot of Heather before that. And I actually do believe that everything that came before that diagnosis informs that moment.   01:02:32:17 - 01:02:55:09 Heather Trammell So the moment you hear your child has Down syndrome, that's that's a moment in time. But how you feel about that moment had everything to do with all the years before that. I grew up in a small town in Michigan, and two of the things that are significant about my younger years was that I was born with a cleft lip and cleft palate that was continually under construction.   01:02:55:09 - 01:03:25:00 Heather Trammell Now these days, children with cleft lip and cleft palate have this space age remarkable surgery, and it's all done by the time they're in kindergarten. But mine went all the way through college, and so I was just kind of a work in progress, so to speak, as far as my face goes. And so I had to, you know, go to school with surgical scars, lips not applying the right way, nose not allowing the right way speech difficulties.   01:03:25:06 - 01:04:00:10 Heather Trammell And that was really hard. That was hard. Kids are not always very forgiving about that kind of thing. Also, at the same time, I grew up with a bipolar parent who also struggled with her mental health, was sometimes compliant with medication therapy, sometimes not. And the times that were not were very difficult for us. So those two things, I think, are what came crashing to my mind when I heard that my unborn child was going to have Down's Syndrome.   01:04:00:12 - 01:04:26:20 Heather Trammell Then we got that chip off, the ultrasound chip off the day before 911. And I thought September 10th, 2011 couldn't be the worst day of anybody's life. It certainly was the worst day of mine. And then September 11th happened, really, and the whole world was falling apart. I thought, you know, that is that one of the hardest things that's ever happened for me?   01:04:26:22 - 01:04:54:00 Heather Trammell And now I am sure that the second half of my life is probably going to be as difficult as the first. I really had it in my mind that I was happily married. We were expecting our first child. It was all going to be great from now on because I had already checked the box on the hard stuff and I got through it and I grew from it.   01:04:54:02 - 01:05:20:07 Heather Trammell Good. Let's just move on. But that was the first thing that came to my mind when we got that diagnosis. That was a prenatal diagnosis. It was pretty early. It was early enough to have amnio. So the noninvasive prenatal screenings were not terribly were either weren't available or they weren't terribly good back then. So if you're really wanting to know, then get an amnio.   01:05:20:09 - 01:05:53:07 Heather Trammell And we felt like that was worth getting. So we got it. And I had in my recollection, I could be wrong here, but my recollection was I had asked my doctor not to share that news with me during the work day. He had called me with the ultrasound information on September 10th, during the work day, I had a very hard time keeping my brain together in the very busy Georgetown law firm where I worked.   01:05:53:09 - 01:06:18:10 Heather Trammell And so I thought, Let's not do that again. Don't call me at the office. But either I did not tell him that or he forgot because he did call me with the amnio results at the office and I was speechless. Of course, breath taken away and he said, I'd like you to come to my office right away. I stumbled and said, Well, what about Thursday?   01:06:18:12 - 01:06:44:21 Heather Trammell He said, Well, no, I mean, now I'll clear my calendar. Come right now. And I'm like, okay. So I took leave of my colleagues. I stomped my way back up the sidewalk the way I had just come down a half an hour earlier. And it was one of those beautiful October days where the sun is shining. It's not hot anymore.   01:06:44:23 - 01:07:11:17 Heather Trammell You fall is starting to show. It was just gorgeous. And I thought to myself, How dare the sun be shining today? This is really this is not good. And then I got on the train, the subway, which in Washington, D.C., from the north part of Washington, D.C., down to Virginia, you have to pass by the Pentagon station, which at that time was completely closed.   01:07:11:17 - 01:07:37:10 Heather Trammell Then you could still smell the smoke from the Pentagon attack as you passed by. So my mood did not get better all the way at the office. So my my husband and I met at the train station. We went to his office. He sat across his big oak desk with a very serious expression on his face. He didn't say anything like nothing at all.   01:07:37:12 - 01:08:02:03 Heather Trammell We weren't sure what to say either, so we. We just picked things out of the air where we weren't even sure what to ask. We said so is the baby okay? He said, Well, we're going to get a level two ultrasound. Here's your prescription, and that'll tell us more. Great. Am I okay? He said, Oh, you know, your health is good.   01:08:02:03 - 01:08:32:05 Heather Trammell This will not affect your health. Good. And then we're still fishing for things to say. We said, Well, so is it a girl or a boy? And he shuffled some papers and he said, it's female. And in my mind now, my husband is much more generous and thoughtful than I am. But in my mind he had just reduced my unborn child to a tadpole experiment.   01:08:32:07 - 01:09:01:20 Heather Trammell And I thought that was just it was really unreasonable of him medically. Yes, he's right. Female ex-wife. Got your exit? Sorry. Got it. But we were having a girl or a boy. I'm not giving birth to a thing. Giving birth to a real person so we could leave of his office. He didn't give us any other information. No books to read, websites to consult people to talk to.   01:09:01:22 - 01:09:29:23 Heather Trammell That was either because he forgot he didn't know or I'm not sure why he didn't, but or he maybe he expected the maternal fetal medicine people to do that. Whatever his reason was. We spent the rest of the day deciding on a name for our little girl because she was no longer going to be known as the baby or the problem when she was our little girl and she had to have a name.   01:09:30:00 - 01:09:55:03 Heather Trammell So we we named her Elizabeth. And that very moment, she was going to be Beth forever. So we went on with the rest of our pregnancy many days. I woke up in the morning after a nice night's sleep. You know, when you wake up in the morning and you've had a good night's sleep and you feel, ah, you just have that feeling like you have you have done well.   01:09:55:05 - 01:10:22:23 Heather Trammell And then I remembered my situation and then the bottom fell out of my stomach, like kind of every morning. So that was really, really difficult. One of the things I did during that time and in retrospect I would say it was somewhat self preservation. Self preservation being I didn't want to tell other people about our news. I really didn't want to hear what sweet children they were, how God.   01:10:22:23 - 01:10:53:01 Heather Trammell When we give special children to special parents or whatever, I might have thought I was going to hear and threatened my husband with certain death if he told anybody. But we did have lunch with a college buddy of mine and his wife. For some reason I just felt really comfortable with them and I told them our news over dinner and the next day she introduced me via email to somebody she worked with at the middle school where she was a teacher.   01:10:53:03 - 01:11:19:02 Heather Trammell This woman was a special educator at the middle school, and I thought to myself, Well, if we're having a baby with Down's syndrome, I am going to be the best prepared parent known to the free world. And so, yes, I think I had better learn about this special ed thing now. I prepared a whole list of notes, you know, and I went to a sit down with this lady at her home.   01:11:19:04 - 01:11:50:02 Heather Trammell Her family was out of town for a family event. I sat in her living room with my cookies and my orange juice, and I opened up my notebook of my voluminous notes. I was ready. I was not going to waste this woman's time. The first thing out of her mouth was, So tell me your story. And you know what, Erin, we can talk about, especially for the next 4 hours, we can talk about special ed at all.   01:11:50:04 - 01:12:12:19 Heather Trammell We talked about how I was feeling, what I was thinking, what I was excited about, what I was scared about, questions I could ask and get answered for hours. The sun went down and I never ask a single special ed question the entire afternoon because what I really needed was to be heard and to be heard in my heart and soul.   01:12:12:21 - 01:12:34:24 Heather Trammell Eventually, I found out everything I need to know about special ed and more that I didn't want to know about special. You get me, right, Erin? Oh, yeah. So we ended our conversation, and on my way back to the car, I thought to myself, You know, if the world of disability is filled with cool people like her, I think I'm going to like it here.   01:12:35:01 - 01:13:02:11 Heather Trammell And I was right. There's lots of cool people out there like her. And I met them. You are one of them and many others. So I've met some wonderful people in the land of disability. And I think that really started me also on the path of yet another career turn in the road. I swear my resume looks like a meandering silver thread.   01:13:02:13 - 01:13:26:15 Heather Trammell Mm. So I was a music major in college. I was a concert promoter and a booking agent. After I was in college. Then I was a paralegal, and then I was a non-lawyer support professional. And then I was a parent support professional because that's what I just really made a difference to me. How that woman helped me. I wanted to be that kind of help to other people, too.   01:13:26:17 - 01:13:44:15 Heather Trammell And I had already had a little bit of training in that kind of thing, so I was glad to pick up the mantle of leadership in that way. That was 20 years ago, if you can believe it. Like 20 years. This very year I have been serving parents and I've loved every minute of it.   01:13:44:17 - 01:13:46:05 Erin Croyle And you are so good at it.   01:13:46:06 - 01:13:52:03 Heather Trammell Oh, thank you. You're welcome. I even got myself a little 20 European from Amazon.   01:13:52:05 - 01:13:54:12 Erin Croyle As you should. Someone should have done that.   01:13:54:14 - 01:13:55:02 Heather Trammell Oh.   01:13:55:04 - 01:14:08:23 Erin Croyle My goodness. So when you moved on to that role, did that role exist? Did you create it? Tell me a little bit about what you do, but also how you started doing that.   01:14:09:00 - 01:14:37:22 Heather Trammell Sure. Yes. The role did exist before I got there, and the role had been held by several people before me. People who were at that time legends in their own time. When I took over that mantle of leadership, I had a small group of volunteers that were open to be ing, volunteer, mentor parents. And so I thought, Well, I will call all these people and introduce myself that I'm the new director of Family Support and just wanting to introduce myself.   01:14:37:24 - 01:15:00:08 Heather Trammell And every time I probably could, 80% of them said, Oh, wow, that's really nice. Warm welcome. It's nice to meet you. Oh, you know, Amy, I love Amy. She's just the best. She was there when my little boy was born. And I thought to myself, Oh, my. What kind of shoes are my stepping into? I was a little bit.   01:15:00:08 - 01:15:27:02 Heather Trammell And I was excited, but a little bit intimidating. Right. One of the things that was really instructive to me at that time was that I was noticing so many parents at that time. Now we're talking this is 2003. We're not getting in touch with our organization until their babies were six months old. And I thought, Oh, well, that's just really shouldn't they have gotten in touch with us earlier?   01:15:27:03 - 01:15:55:00 Heather Trammell I mean, not everybody had great Internet access at that time. Our website at that time was really not that good. It wasn't verifiable. So, of course, I mean, maybe people just didn't know about it. So I went to the director of the organization at that time and I said, Hey, what is up with this? Why do people not call us until like six, nine months after their babies are born?   01:15:55:02 - 01:16:21:02 Heather Trammell She said, you know, I think I wouldn't worry about that so much as what I would focus on is you go make this the best it it can be. You be the best you can be so that when they call and they will, that you are there for them being the best and giving the best that you have for them.   01:16:21:04 - 01:16:44:20 Heather Trammell And I took that as my marching orders. I did a little bit of revamp to that program. I was glad to get tremendous advice from other parent support directors around the country and learned a lot from them to implement into that program. So, yes, it did exist before I got there. And yeah, I did tweak it a little bit as time went by.   01:16:44:22 - 01:17:08:11 Erin Croyle When we think about parents that are just getting a diagnosis, whether it be Down's syndrome or cerebral palsy or any of the other things that go on, you know, the rare diagnoses too, as some of my friends have told me, we don't have a club. Right. What I do love is that we help anyone who needs help because so many of our experiences are similar.   01:17:08:13 - 01:17:20:05 Erin Croyle You're able to reach so many parents at such a vulnerable time. Can you talk about some of the different reactions you've seen throughout the years?   01:17:20:07 - 01:17:46:23 Heather Trammell I think it's a good idea to remember that you never stand in the same river twice. So even though I can sit here and tell you that some of the stories I've heard are are very common or even repetitious, I mean, some things are just so common. I could almost write other people's birth story, but I never stand in the same river twice.   01:17:46:24 - 01:18:14:23 Heather Trammell I'm not the same person now as I was 20 years ago. Being the brand new parent support director and the parents that I meet now are certainly not the same people that they were then. First of all, the child rearing years of the people I meet now, I mean, these people grew up on the Internet. They grew up with cell phones and social media accounts.   01:18:15:00 - 01:18:39:14 Heather Trammell They are very, very well connected. So a lot of times when I meet a new or expectant parent for the first time, they have already done quite a bit of Internet reading. They have maybe gotten in touch with some other parents via social media. I'm just another step on the train. So a little bit of a difference now from back then.   01:18:39:15 - 01:19:06:00 Heather Trammell So 20 years ago, maybe there wasn't really anything for them to go look at, really. And it certainly wasn't very cheerful. I think in the twins or anything before the twins, you could find some websites about Down's syndrome and you're sorry you looked it, which is really not very cheerful. They were very medical based, not telling you anything about what life was like with Down's syndrome.   01:19:06:04 - 01:19:45:08 Heather Trammell And if they did, it was gloom and doom. Nobody wanted to hear that. So some of the parents I've met now have definitely got a lot more homework before they get to me. And if they have a prenatal diagnosis, they're going to have that information through noninvasive prenatal testing. So much more now than ever before. So back in 2000, the noninvasive testing you could get was an AFP test, which was accuracy was always never very good.   01:19:45:10 - 01:20:07:16 Heather Trammell So you actually really hardly could take that seriously. Back then, the noninvasive prenatal testing is now is quite accurate. So we just take it as, yeah, you're having a baby with Down's syndrome even though you didn't have a normal or serious test. So people know a lot beforehand. Sometimes I used to still go talk to parents who are surprised at birth.   01:20:07:17 - 01:20:35:12 Heather Trammell Some parents just refuse prenatal testing on moral grounds. They are not interested in getting that information. They are scared of any risk to their child's health at all. They just want to have a happy pregnancy. She or they are just convinced that there's just no way in the world they could ever have a baby with Down's syndrome because A, B, C, D, you know, go on with whatever reason they thought.   01:20:35:14 - 01:21:05:24 Heather Trammell So I do find parents to be a little bit more prepared by the time they talk to me. They have tested the waters in social media about who there are. People are, so to speak. So back in 2000, you could call Heather Trimble and you were. You just really hoped that she was a really nice person and that she was going to answer your call because you really have any idea what kind of moron I was?   01:21:06:00 - 01:21:25:02 Heather Trammell I mean, you had really good. No. But now they have all already been a part of social media circles and they have already met people virtually. And they kind of know, well, I like these kind of people. Are my people. These kind of people are my people. And then by the time they get to me, I guess it matter like whether I'm a jerk or not.   01:21:25:02 - 01:21:48:21 Heather Trammell I mean, they're just like, well, let's just get the local people on board. I am as much of a social media freak as anybody you will ever meet. I can spend hours on Facebook just whiling the afternoon away. I'd learn good luck. I've met people. I have become a better parent, a better person. I learned so much through social media.   01:21:49:02 - 01:22:20:10 Heather Trammell There's still something lost by not having in real life people to talk to. Even during FaceTime or Zoom. When we say it out loud. She's somebody else. My child has a disability. I think that helps us move down the road in a way that social media doesn't have. Social media, we can be anybody we want to be. We can feel any way we want to feel.   01:22:20:10 - 01:22:37:23 Heather Trammell We can curate any way we want to. But when you're actually with somebody, you have to look them in the eye and tell them, My child has a disability. You say it out loud. I think that helps us move forward in our parenting a lot.   01:22:38:00 - 01:22:57:03 Erin Croyle I love that you said that. I think about social media sometimes in the work that I do with my colleagues. You know, we make sure that we're meeting people on social media. I find myself having a difficult time wanting to interact with someone in real time because we do it so much less now.   01:22:57:05 - 01:22:58:06 Heather Trammell No.   01:22:58:08 - 01:23:12:18 Erin Croyle But at the same time, I still remember at Down's Syndrome Association of Northern Virginia, DSM-V, I think it was a Christmas party or a spring party or whatever. I met my people.   01:23:12:23 - 01:23:13:23 Heather Trammell I met a whole.   01:23:13:23 - 01:23:35:00 Erin Croyle Group of people and all of our kids were babies and they just laid on the thing together and we became friends. And what was beautiful about that is that in social media you find your people and you find your bubble. But in this group of people, we had all these different ideas and opinions that we could share and they weren't bubbled, right?   01:23:35:01 - 01:23:42:08 Erin Croyle We knew we could we could share different opinions. And when you meet someone in person, like you're saying, it is a different dynamic because.   01:23:42:10 - 01:24:06:17 Heather Trammell You know, am I saying it's better or worse? I just think it's a it's a nuance we really miss if we don't get together in real life. Now, that being said, thank God for social media because there are people who live way out in the very far western part of Virginia. I don't even know what road they go to to get to the store because they are just so far out there and they're not going to be.   01:24:06:18 - 01:24:32:02 Heather Trammell There's not like the monstrous Girls and Girl Association of Northern Virginia or the gown, you know, Virginia Gown Singer Association, which is really big, too. If you live within two miles of the Virginia border out west, there's not a lot of girls and girl existence out there. So thank God that there is social media connections for people who aren't able to be a part of anything in real life.   01:24:32:04 - 01:24:55:19 Heather Trammell And there are I mean, certainly there are some parents who are immigrants, recent immigrants in the United States. They're not very confident about their English. They spending the entire afternoon with people speaking English without them is going to be very, very difficult. And they are able to Google translate things that they're on the Internet, so they feel a little bit more comfortable.   01:24:55:21 - 01:25:06:02 Erin Croyle I think the beauty of that, too, is because we have really strong organizations across Virginia. For instance, you could send someone to the Center for Family Involvement. We have a.   01:25:06:02 - 01:25:07:03 Heather Trammell Rural.   01:25:07:05 - 01:25:37:04 Erin Croyle Right. We have a rural specialist who lives in southern Virginia who can speak to those issues we have. One of my colleagues is specializes in refugee support and she has multilingual staff members. We really make an effort between all of the organizations across Virginia to really support any family that comes our way. I think military families, really it's a hard time for them because they have to learn systems in whatever state they transfer into.   01:25:37:06 - 01:26:03:06 Heather Trammell Certainly. And and conversely, I have a hard time understanding their system, too. I think whenever I hear the word TRICARE, my eyes glaze over because I don't really understand that system very well. And I have no I've I've hardly moved ever in my entire life, but my military friends move all the time. So I do feel for them to every every demographic is going to have their challenges, I think.   01:26:03:06 - 01:26:11:19 Heather Trammell And we are definitely glad to I and we are glad I could definitely support anybody from anywhere. Yeah.   01:26:11:21 - 01:26:42:09 Erin Croyle Yeah, yeah. And I think the the beauty of the parent to parent support that a lot of groups like ours and yours offer is that we've been there that lived experience we understand the urgency we understand these feelings. I think it's very important that we have that support because I know that in the professional circles when you have to go to say, a community services board or even early intervention to some extent, you know, the people are wonderful, but they don't really understand what you're living.   01:26:42:11 - 01:27:06:20 Heather Trammell At all right. Right. You know, what's really funny is that sometimes, even to this day, and I'm not sure why it is, but sometimes I will talk to newer, expectant parents and they'll say, oh, well, do you have a child with Down's syndrome? And to me, in the one part of my brain, I'm thinking, Well, yes, of course I have a child with Down's syndrome.   01:27:06:20 - 01:27:26:21 Heather Trammell Why do you think I do this? You know, of course I have a child with Down's syndrome, but somehow, somehow they think I'm a social worker or something. I don't know if that's my lovely voice or they hadn't thought about it or I don't know. But I'm like, Yes, I, too have been on this path where you are.   01:27:26:22 - 01:27:51:23 Heather Trammell Now, one of the things that I, I try to remind myself not to say is I know how you feel now. I know how I felt when I was at your point, but I don't know how you feel because I don't know you and all the 30 some years that came before you found out your baby had Down syndrome, that informs how you feel at that moment.   01:27:51:23 - 01:28:15:22 Heather Trammell As I was saying with my own story, I know how you feel is totally not totally, but largely dependent on who you were before that moment. And I don't know that. So I want people to know that I have been in this spot before. That doesn't mean I know you, but I know I know how this spot looks because I've been there.   01:28:15:24 - 01:28:49:00 Erin Croyle And let's talk about that spot because I think that grief is something that probably most parents experience. And I know that a lot of us experience it through different parts of our life. But I think that the people you're seeing and the people that you're helping, the new parents, it's that grieving of the parenting experience you thought you were going to have and realizing the milestones that are going to look different than non-disabled siblings and cousins and friends.   01:28:49:02 - 01:29:16:16 Erin Croyle You know, one of the hardest things we have to face is that you could potentially outlive your child. There are these things I know in my own experience before my son, my first child, I didn't have to deal with the medical community. I didn't understand doctors, you know, doctors. I took them for their word. So it was this massive amount of grief compiled with this mass amount of information I had to take in.   01:29:16:18 - 01:29:20:19 Erin Croyle And so those first months.   01:29:20:21 - 01:29:21:10 Heather Trammell Yeah.   01:29:21:12 - 01:29:43:17 Erin Croyle When you were talking about like not wanting to talk to anybody, I remember telling people when my son was first diagnosed, he was diagnosed after birth and it was very confusing time. There was a test that came back and first he had it and then he didn't. And I don't I mean, that's a whole podcast in itself, but.   01:29:43:19 - 01:30:01:06 Erin Croyle Right. Yeah. I remember telling people, Please don't blow sunshine up my ass. Right. Like, just don't I know it's going to be okay one day. I get that. But right now I just need to feel what I'm feeling. And I remember. Right.   01:30:01:07 - 01:30:28:06 Heather Trammell And I know you could not be more right. I have heard it many, many times throughout my years in serving parents that they have had it with the unicorns and rainbows stories that they hear on the Internet and they're like, just give it to me straight already. Now, some people want unicorns and rainbows. I'm like, okay, that's fine.   01:30:28:08 - 01:31:02:00 Heather Trammell They don't want to hear about the medical concerns that they might have to deal with. They don't want to know how arduous special education is. They just want to have them enjoy their pregnancies, enjoy their new babies. They want to hear how life is beautiful and life is beautiful. Nothing. It's not. That's what they want to hear. But other parents feel like that is, as you so eloquently put it, blowing sunshine up my ass and they are like not having any of it.   01:31:02:02 - 01:31:08:21 Heather Trammell And they want to hear. They want to hear the whole story, not just one part of it. They want to hear the whole thing.   01:31:08:23 - 01:31:24:11 Erin Croyle So what would you say with 20 years, Heather? You mentioned before some of the commonalities and something you see a lot of the time or most of the time. But can you run through sort of the gamut of different reactions when you welcome new parents?   01:31:24:13 - 01:31:52:00 Heather Trammell Sure. I mean, when I whenever I pick up the phone or see a new email come by, I'm always a little I have a little bit of trepidation because I'm like, I don't know who's going to be on the other end. How are they doing? Fortunately, having grown up with a bipolar parent, I have become pretty good at reading between the lines with people when they tell me they're doing great.   01:31:52:02 - 01:32:19:02 Heather Trammell I'm like, okay, I'm accepting that at face value. I don't know that I necessarily believe it, but I don't believe it because of all the other things you said. But we'll just take it at face value. You think you're doing great. That's good. Some parents are doing just fine. They really do not have that excessive grief that can really happen with other parents.   01:32:19:04 - 01:32:44:15 Heather Trammell That is because I think in my experience, I've seen the parents who do not experience that kind of grief or loss. Feelings are parents who are just so excited to have a baby at all. Egal care whether their baby has Down syndrome or Up syndrome or Sideways Syndrome, they don't care. They're just so excited to be parents. They are great.   01:32:44:16 - 01:33:20:10 Heather Trammell They will just take any baby at all. Parents who adopt have already low times done their homework on Down's syndrome. Not always, but most all of them have. And they're prepared for the idea that their child has a disability. They've already got that. There are parents I have met who want all the information right now. They open the fire hydrant for them and they want everything they want to know about Medicaid and Social Security, and they want to know about early intervention, every single medical thing that happened.   01:33:20:10 - 01:33:48:01 Heather Trammell And they want to know right now, other parents do not want to know hardly. They don't want to talk about Down's syndrome at all. They may not believe the baby has Down's syndrome until the blood test comes back, which is they're like, they're not going to call me until the blood test comes back. Other parents call me from their hospital beds and they're not even out of the hospital yet because they want to get connected.   01:33:48:03 - 01:34:20:05 Heather Trammell Some parents want to hear stories. They want to know what life, daily life is with Down's syndrome. Others do not just want the facts, like the medical practical facts, like what tests we need to do. What tests do we need to do? Who I need to call. They really don't want to hear about other people's stories. So every parent is just really, really different.   01:34:20:07 - 01:34:39:08 Heather Trammell Some are, well, almost all not seriously. All of us are shocked, right? I mean, we're all surprised that we can actually sit out and plan to have a baby with Down's syndrome. Hey, honey, let's have sex. Can I maybe we'll have a baby with Down's syndrome if we get down our heads by the Atlantic Ocean at midnight, you know, kind of thing.   01:34:39:12 - 01:35:10:11 Heather Trammell Like they want to have a baby with Down's syndrome, and they're trying. So most of us are very surprised whether you get it prenatally or positively. Sometimes the the feelings are of surprise are very much the same between a prenatally diagnosed parent or a postnatal diagnosed parent. But with the slight nuance that the prenatal diagnosed parent hasn't met the baby yet, they can't see that they have my eyes and his nose.   01:35:10:15 - 01:35:36:01 Heather Trammell All they know is a diagnosis. That was all we knew when we were pregnant. She has diagnosis, but then she was born and we're like, Oh my goodness, you're just like him. She's got my hair. And she then looks she looks just like him. And everybody thinks they look just like him to this day. And and and we don't know what their personality is like.   01:35:36:03 - 01:36:13:23 Heather Trammell I think that's that's a little that colors that colors the surprise when it's prenatal versus postnatal. The challenging things about postnatal hours that you're getting all the information right when you are postpartum which is such an physically hard August. Physically, emotionally, mentally, every other way. Postpartum is hard for a woman and in general, and then you have all this information to absorb, whereas the prenatal prenatal diagnosed parents may have almost always got that information.   01:36:14:04 - 01:36:52:06 Heather Trammell They already know to ask the doctor about a heart defect. They already know what phone number to call for early intervention. They've they've got that. So that's a little bit of difference there. Most everybody is surprised. Not everybody is shocked and disappointed. How we feel about it would be some kind color by culture because some of my foreign born parents, their their home country culture affecting how they feel about their baby with Down's syndrome because this this this, their experience.   01:36:52:06 - 01:37:06:00 Heather Trammell And they knew about people with Down's syndrome in their home country, but they don't know what it's like here. So sometimes that will color their how their grief experience or their surprise at having a baby with Down's syndrome.   01:37:06:02 - 01:37:13:22 Erin Croyle How do you help families who are stuck in that grief cycle pull themselves out?   01:37:13:24 - 01:37:39:04 Heather Trammell I think parents for calling, as that is the first step of of moving forward in the universe is just picking up the phone. It weighs £9,000. So you should you should be congratulated for calling. You should be congratulated that you have a baby with Down's syndrome. So congratulations on your new baby. I've met very few parents in my life.   01:37:39:06 - 01:38:08:15 Heather Trammell 20 years of service. I can count on maybe one hand the number of parents I think have not ever moved forward in their life with Down's syndrome. I just believe in parents. I believe in parenting. I believe that parents will pull themselves together. I just have faith that way. Now, how I help them do that, I hope by listening to their stories.   01:38:08:17 - 01:38:30:13 Heather Trammell Tell me about your story. That's what made the difference for me. And I want to hold that space for them. Let them tell me about their story, how they're feeling, what they're thinking. They may or may not share all of what they're feeling or thinking because they are so disgusted with what they feel or think, or they think it's awful.   01:38:30:15 - 01:38:54:05 Heather Trammell Why would I say it out loud? I don't want Heather to think I'm a moron. Whatever. They don't want me to think badly of them because of what they may be thinking or feeling. The news is, though, that I have probably thought or felt it myself already, so it's not going to be a real shock to me. And in 20 years of service, I'm pretty unshakable, too.   01:38:54:05 - 01:39:19:08 Heather Trammell I've heard. I've heard it all. You can't mess me up, you know. So I hope that they will that when they share their stories, when they say it out loud that their child has a disability. I think that is a great first step. Just say it out loud. Other great steps are to and this will be increasing in bravery to meet other parents.   01:39:19:10 - 01:39:49:10 Heather Trammell So I will meet. I will have them join our email group. I'll suggest a Facebook page. I will invite them to new parent breakfast so that they can meet other parents. And I think that so so makes the journey better. You mentioned get yourself when you all you and all your baby, you got all your babies. They're all the quote at the picnic and you realize that you are not alone.   01:39:49:12 - 01:40:16:14 Heather Trammell You had you had similar experiences. And you can look at each other in the eye and you you just know you're going to be okay because you're not by yourself. And I think I think isolation would make parenting harder, I think not moving forward in this journey. Isolation would keep a parent from moving forward. So I want to invite a parent to get out of isolation, to poke their head up above the rabbit hole, so to speak.   01:40:16:16 - 01:40:50:17 Heather Trammell Now, I'm going to talk, right, because I'm the one who threatened my husband with certain death. If you told anybody that we had we're having a baby with Down's syndrome. So I recognized that that may take time. You know, it may not be the first indication I give you. It may not be the fifth invitation that I extend but eventually, when they when they do, I see so much positive forward motion in meeting other people online, if you must in real life would be great, too.   01:40:50:19 - 01:41:16:18 Heather Trammell So I think that really does help a lot. I think it helps parents move forward when they can see either through a blog or through what I share or through meeting other parents that they're so much joy to be had in raising our kids, too. Of course, there's difficult things. I am not going to gloss them over for a second, let me tell you.   01:41:16:18 - 01:41:40:12 Heather Trammell No, I'm not. But there's a lot of joy in raising our kids, too. We see their personalities develop. We see how what a positive impact they have on other people. We see us change to engaging. I am not the same person now as I was then. My husband would tell you that I am and I love him for saying this.   01:41:40:14 - 01:42:17:00 Heather Trammell He would say I am. How do you say you're the best version of you you've ever been? Hmm. Well, so I'm evolving. That's great. And so I love to see parents evolve. That's one of the most thrilling things about my work, is seeing parents go from A to B. I there is if I die, someone just put that on my tombstone somehow, You know, she was a sucker for a change of life, you know, And that's what that's what I love seeing is change life.   01:42:17:01 - 01:42:41:22 Heather Trammell Evil people who go from this is the worst thing that's ever happened to me. We will never smile again to. I love it here. Parenting is great. You know, I've seen that happen. I have met parents who, in the beginning were you couldn't get a positive word out of them. If you got any word out of them at all.   01:42:41:22 - 01:43:08:04 Heather Trammell Like they didn't come to Christmas party. Right. They they just didn't. And who gave them time? They eventually came to see the special things they loved about their child. They came to want to have other people see the special things that are true about their child. And they want to share it with the world. It's been fabulous seeing how that I have stories.   01:43:08:07 - 01:43:20:20 Heather Trammell Oh, my goodness, Erin, I have stories when I am very, very old and rocking in my rocking chair. I'll write down all the stories of all the parents I've loved over the years. It's going to be a great book.   01:43:20:22 - 01:43:26:05 Erin Croyle So tell me one of them. Tell me one of your.   01:43:26:07 - 01:43:56:00 Heather Trammell This lady, I knew she had a preschooler at home. She had a new baby with Down's and girl. And I invited her to a very small home gathering. We were going to just view this new video that it came out really small. There was going to be, you know, eight people there, tops. But she brought her family and the hostess of the event had a teenager with girls and girl.   01:43:56:02 - 01:44:17:07 Heather Trammell The teenager was just go. Just a really neat, interactive guy. Oh, he really wanted to meet you, you know, kind of thing. Just really a neat guy. His his speech articulation was very difficult to understand, though. I had to have his mom translate for me because I didn't know him, you know, So I couldn't understand what he was saying.   01:44:17:09 - 01:44:36:12 Heather Trammell We we went to go sit down to view the video and I walked around and this new family was there and I asked the hostess, I say, Wasn't Mary her family just here? I swear I just saw them 2 seconds ago. It's not a big house. She said, Well, I think it was just too much for them, huh?   01:44:36:14 - 01:44:57:19 Heather Trammell I thought to myself, What? Eight people was too much. Wow. Wow. Okay. All right. She's having a difficult time. That's like, all right. Well, over the next year, year and a half, her husband would come and bring the baby to events, but she never came. And I thought, Oh, let me show you, sir. Give my wife your best.   01:44:57:21 - 01:45:19:14 Heather Trammell You know, I just tell her, as it has about a year and a half later, she and I got together for coffee and Engie. She confirmed what was true for me and true for so many other parents. I Just need time to get my head around it. And she good. And not only is she get her head around it, but she held it up.   01:45:19:16 - 01:45:53:05 Heather Trammell A big photo shoot we were having for our association. She was the kingpin for this photo shoot. At the photo shoot, she was hugging all the babies, handshaking, all the parents smiles, just aglow all over because she just needed time to get her head around it. So I I'm always remembering that. True for me, true for so many other parents, whether it takes you 5 minutes, can get your head around it or a few years to get your head around it.   01:45:53:07 - 01:46:02:00 Heather Trammell If that time matters to you, then that time matters to you. And I want to hold that space for them. It helps.   01:46:02:02 - 01:46:41:09 Erin Croyle I'm glad that you said that because I think we're all so different and we all need time to figure it out on our own. I wonder when you were saying this, it made me think of myself and how I had kind of the reverse thing. And I still do in some ways where if I'm with friends or family who have non-disabled children, I remember specifically one time when my son was was young toddler preschool age and I had to leave this like moms night because people were complaining about you know, their kid and playing hockey or this or that.   01:46:41:09 - 01:47:15:16 Erin Croyle And it was just it just felt almost cruel to me because my experience was so vastly different. And so a lot of times I find myself gravitating to parents who have kids with disabilities because there's this unspoken understanding there where if my son does something strange or I have to leave suddenly or you know, all of the things that we have to endure, they just get it.   01:47:15:18 - 01:47:40:12 Heather Trammell Yeah. Again, people who get it really do make a difference. And that that lady I told you about that I met when I was pregnant. She had an illustration that I have kept in my heart all these years too. She said, You know, Heather, there are muggles and there are wizards in the land of disability. The Wizards are the people who get it.   01:47:40:14 - 01:48:08:07 Heather Trammell You know, we understand each other. We know there's platform nine in three quarters. We know how to get there. You know, we know each other. And then there are muggles. They don't get it. They just don't get it. Now there are kind hearted muggles and there are stupid muggles. There are kindhearted wizards and there are evil wizards. Believe me, there's plenty of people in the way of disability who I don't care to have storybooks with.   01:48:08:09 - 01:48:19:16 Heather Trammell They're just not my people. But there are muggles and there are wizards. Some people get it, some people don't. And there's a real camaraderie when we have people who get it. I totally agree.   01:48:19:18 - 01:48:49:03 Erin Croyle That is the most interesting analogy I've ever heard. And it just it also highlights the beauty of disability and the uniqueness and the way that it expands who you are as a person. You touched on this earlier, but I think a lot of us feel like if it weren't for my son, I don't think I would be as worldly and as tolerant and as patient as I am now.   01:48:49:03 - 01:48:57:21 Erin Croyle I just there are things that I get and there's an empathy that I have that I'm not sure would have existed or matured in me. Right.   01:48:58:00 - 01:49:16:09 Heather Trammell Our kids change us all the way. Well, parenting will change anybody. You know on any day of the week. But I think parenting changes us when disability is in the mix in a much different way. It's so much more of a primal way, I think.   01:49:16:11 - 01:49:34:21 Erin Croyle Yeah, and it informs the way. So I have two younger kids is, you know, and it informs the way we parent them. And I've put less emphasis on certain things that I realize now aren't important, but I'm not sure if I would have if it weren't for my oldest.   01:49:34:23 - 01:49:52:17 Heather Trammell My oldest held Down's syndrome, but my younger daughter is on the autism spectrum and understanding my older daughter's needs. And having rearranged my mind about, you know, developmental milestones.   01:49:52:19 - 01:49:53:14 Erin Croyle And.   01:49:53:16 - 01:50:22:04 Heather Trammell What what she should and shouldn't be doing it any age appropriate thing has helped me a lot. When my younger daughter was diagnosed on the autism spectrum because I was not did not experience that grief response with her that I did with her sister, because with her I was like, Well, okay, she has a disability is autism. I don't know much about autism, but I'm going to find out and I know exactly where to look.   01:50:22:10 - 01:50:50:05 Heather Trammell I know who you ask. And so I think in one way, parenting our younger daughter has been enhanced or helped because we're like, okay, so this is you. This is you where you're at right now. I am here too. I'm here for you to move you to whatever your next level is of understanding or development or whatever you need.   01:50:50:07 - 01:51:09:21 Heather Trammell Here I am. Whereas with, you know, when we first felt that our daughter had girls and girl and we were like, Well, there's absolutely nothing we can do about that kind of thing, we felt like the world had crashed and burned right there, but we didn't feel that way with our younger daughter. We were we were. What's the what's the word?   01:51:09:21 - 01:51:35:20 Heather Trammell I want to use? Curious, inquisitive. We were like, Well, so tell me, what can I do for you? You know? And I think that my world has come crashing down, but more like so this is interesting. So let's do this. Let's do this thing. So I think it was definitely different the second time around.   01:51:35:22 - 01:51:47:17 Erin Croyle Interesting. And this is I just have to ask out of my own journalistic curiosity, what differences do you see in the Down's syndrome community and the autism community as a parent?   01:51:47:19 - 01:52:23:13 Heather Trammell MM Different. Yeah. Well, I am one of those really weird autistic mom people who embraces neurodiversity like I'm going to wave my neuron diversity flag, you know, like somebody to have the puzzle pieces. But I like neurodiversity. I think I see one of the differences is the language we use people first language reflective, reflected we in the girls and girl community, but they use identity first language in the autism community.   01:52:23:18 - 01:52:43:20 Heather Trammell So I am more likely to you're more likely to hear me say in conversation, Yes, I have a daughter with Down's syndrome and I also have an autistic child as well. Well, I would never say I have a Down's syndrome child. Right. And I would not so I would not stand in my autism circles and say, oh, my child has autism.   01:52:43:20 - 01:53:20:07 Heather Trammell I would say she's autistic. I what I see, sadly sometimes even in both communities, but for different reasons, is when parents divide parents can really divide in both communities, and it just breaks my heart to see it every time Are in the autism community. There can be a very sharp divide between children, autistic children who need an incredible amount of support and those who don't need as much support, i.e., high functioning, low functioning.   01:53:20:09 - 01:53:44:22 Heather Trammell My gosh, we could go into this forever. But I see that divide a lot in the autism community and believing that autism can be cured by X, Y, and Z. I mean, this could really give my parents a lot how we treat what we do for autism, how we help people who are autistic in the gaps in your own community.   01:53:44:22 - 01:54:18:04 Heather Trammell I think we definitely can divide yet again on the high functioning, role functioning people. That can be really difficult. I think in the towns in your own community, we know it's genetic, we know it's a genetic condition. We already know this medical science has spoken. It is a genetic condition. There's no gray area about that. But then sometimes we'll divide again on educational choices.   01:54:18:06 - 01:54:46:00 Heather Trammell What disappoints me and hurts me so bad is to hear parents in either community beat each other up for their choices. Like if you went only X, Y, z, then your child would be doing better. You should ABC, you should do. You should do this, you should do that. You should do that because are not your child is not going as well.   01:54:46:02 - 01:55:17:17 Heather Trammell Because you're not you are not as good a parent. This is the unspoken kind of thing that happens in both communities. And I find it so disheartening and so disappointing. Inclusion, school inclusion choices, health care. Whether you use this therapy, that therapy, this supplement or that supplement, I just it just disappoints me so much to hear parents beat each other up about that and divide about that crushing, absolutely crushing.   01:55:17:19 - 01:55:43:01 Erin Croyle Well, Heather, you just provided the perfect tease for our part to pull. That's what we're going to talk in the next episode. Yeah, because I can't wait to talk about that. Yeah, I have one more question. I think just one more related to kind of the parenting thing and I am curious about how extended family and close friends affect your work.   01:55:43:01 - 01:56:01:18 Erin Croyle What you see, because I know that in my own circles it can range from like supportive family who understands and makes an effort and then others that try to understand but really don't. And then you have, you know, family and friends who think that they get it, but they don't. And they talk to your kid as if they're a child.   01:56:01:18 - 01:56:24:18 Erin Croyle And it's like, oh, yeah, of course you have people who are downright offensive and might use the R word or might say something terrible and then get mad when you call them out. Right. So, you know, do you deal with those dynamics and, you know, how do you how do you help families navigate that? Like, really difficult sort of.   01:56:24:20 - 01:57:01:07 Heather Trammell Yeah. Yeah. I think in Down's Syndrome circles, I am not called upon to assist with new parents having problems with their new the new grandparents. Like their parents, sometimes they will have difficulty, like the grandparents will not believe the diagnosis. They just don't have Down syndrome. They all look like they have Down's syndrome. Therefore they don't have Down syndrome or grandparents.   01:57:01:09 - 01:57:25:18 Heather Trammell Well, again, we're talking about a different generation. I mean, my parents in their eighties did not see adults with Down's syndrome walking around because they didn't have that life expectancy then. But now I'm going to go visit my dad next week in his eighties. And if he doesn't know it already, my daughter will outlive me. Well, what's that going to be about?   01:57:25:18 - 01:57:52:00 Heather Trammell That never happened in this day and age. So sometimes grandparents perceptions can be very colored that way. And then other grandparents, like my own parents, they're like Johnny on the spot. You tell us what we need to know, what we need to think when we need to show up, and we are all about it. You just tell us, you know, I'll tell you a story that really, really mattered a lot to me when I was new parent.   01:57:52:00 - 01:58:12:16 Heather Trammell My daughter with Down's syndrome was in neonatal intensive care for about a month, and they gave us, of course, no indication of exactly when she was going to go home. You know, we'll see that kind of thing. So my dad and his fiancee wanted to come out and visit us. And I said, Well, Dad, I don't know if the baby's going to be out of the hospital by then.   01:58:12:18 - 01:58:31:23 Heather Trammell And your fiancee is not family yet. So I don't know if she's going to be actually allowed to come into the nick. You. I didn't even know her then. I didn't even know, like, if I wanted her to meet the baby. He said, well, we're just going to come anyway, okay? And I'm like, okay, your wife come on out, you know?   01:58:31:23 - 01:58:56:23 Heather Trammell So they got a hotel room and they met us at the hospital one day. And my that his fiancee, now my mother said, Hey, why don't Scott and I go get a coffee in the cafeteria? You take your girl upstairs to go visit the baby. Great. You know, So I went upstairs and they're all a flutter upstairs. So, Heather, today's the day you're ready.   01:58:56:23 - 01:59:19:23 Heather Trammell And I'm like, Ready for what they said to be going all day. And I'm like, No, seriously, it's going home. I didn't even have the car seat, you know, kind of thing. So we went back downstairs. We said, Hey, guess what is going home? Gay? Surprise, surprise. My now stepmother, then father's fiancee, said, Wow, that's so exciting. That's great.   01:59:19:23 - 01:59:41:22 Heather Trammell Hey, here's what your dad and I can do. You can. I can go back to the hotel you guys give all situated and squared away here at the hospital. Go home, chill out, get some rest. Call us when you want to come over. Will bring dinner. I was like, Awesome. That's great. So I, I, we got all situated, got back home.   01:59:41:22 - 02:00:03:19 Heather Trammell It all went exactly that way. Later on, I thought to myself, you know, if it had been my dad's second wife who had already who had passed away by this time, but if my dad's second wife had been a part of this scenario, it would not have gone down like that. She would have badgered the McHugh staff to come inside to the McHugh.   02:00:03:21 - 02:00:32:18 Heather Trammell She would have hovered over us on way out the McHugh because there's just no way we could have done this by ourselves because we weren't capable. She didn't see us as adults. We couldn't possibly handle this without her expertise, you know, And she would have probably just barged ragged right there at home. And I thought to myself, you know, this is absolutely I couldn't give I couldn't have planned this better myself.   02:00:32:20 - 02:01:04:09 Heather Trammell I love this way, Dad, Marry her now. You know, she's great today, but I always remember that about her, that she gave us space and she believed that we had it in us to be the perfect parents for the job. And if I ever hear difficult stories from new parents about their parents, about their the new grandparents, it's usually the kind of story that starts with they don't think we can do it.   02:01:04:11 - 02:01:27:14 Heather Trammell They don't think we have it in us. They've seen us screw up this, that and the other thing, and they're sure we can't handle this. So I find that very disappointing. That doesn't happen very often. I'm glad to say that there are grandparents out there, like my parents who are all over it. They are glad to read and understand whatever you tell them to read and understand.   02:01:27:16 - 02:02:03:15 Heather Trammell They are all they're loving on the new baby and loving on their adult children. And they are absolutely awesome. I think in autism parent circles I hear much more challenging situations with extended family, brothers and sisters who won't let their children around because because yours is just too wild or, you know, whatever too much grandparents who are most certain this child doesn't have autism at all.   02:02:03:19 - 02:02:34:23 Heather Trammell They just need a good spanking. You don't disappoint them enough. They can't possibly be autistic friends. Some friends have stepped up beautifully. And yet I do hear heartbreaking stories about other friends who are so they're so afraid of saying the wrong thing that they say nothing. And then they go years of saying nothing, and then the relationship moves on, which is very, very sad.   02:02:35:00 - 02:02:39:16 Heather Trammell Those are some of the things that I've heard. Difficult.   02:02:39:18 - 02:02:40:12 Erin Croyle Yeah.   02:02:40:14 - 02:03:15:06 Heather Trammell Not always. Some families are fabulous. You know, they all come to Buddy, walk with their team t shirts on and everything, and they've got it. They've got it in the bag. But then others not so much difficult generations can be make that difficult culture can make that difficult. Lack of understanding about the disability can make that difficult. I know some of my foreign born parents have not told their parents back in their home country that their child has Down syndrome because then their parents back in their home country would worry about them a lot.   02:03:15:08 - 02:03:25:17 Heather Trammell They wouldn't get it. They wouldn't understand it all. Yeah, that would be very difficult. Has that been your experience of of your colleagues?   02:03:25:20 - 02:03:53:09 Erin Croyle I mean, it's similar. Yeah, there's very different. I mean, it just runs all over and yeah, the cultural differences are significant where, I mean, you know, my son was born in Malaysia and when he was born and we saw doctors there like, well, no one here. If someone has a disability here, you don't see them, right? They just they're just kind of kept in their homes and I don't know about you, but after my son was born, I hadn't.   02:03:53:11 - 02:04:06:00 Erin Croyle My son was the first person I met with Down syndrome. And so after he was born, then I saw every thing and I started noticing where people are at all.   02:04:06:00 - 02:04:06:13 Heather Trammell Right.   02:04:06:15 - 02:04:22:00 Erin Croyle Right. And well, and then the whole. But you're part of the club thing, like, it gets really embarrassing when my it's really embarrassing when my son isn't with me because I'll see like a parent with somebody or an adult and I'll just want to who has Down syndrome and I just want to go up and talk to them.   02:04:22:02 - 02:04:41:07 Heather Trammell Right? Right. Yeah, I know, I know. Yeah, yeah. If you had your son with you, you have more of an end to have that conversation. I remember being in a cardiologist office with my younger daughter one day. Now my younger daughter is autistic, but you know, that doesn't have a look about it. So we were just there waiting for our appointment.   02:04:41:09 - 02:05:02:21 Heather Trammell And there was a young mom there with her little boy who had a genetic condition, some kind of genetic condition. She was entertaining her little boy with toys and engaging him. And they were very cute together. And I was just sitting there with my daughter. You know, I was reading a magazine. She was reading a book. We were waiting for our appointment.   02:05:02:23 - 02:05:23:08 Heather Trammell And I'm willing to, like, get the t shirt or the mug that said, I get it right. You know, I don't don't sit here and think I'm the person that doesn't get it just because this one looks typical. You know, I'm one of you. Me? See, I got the t shirt, you know, I just wanted to, like, pop out there.   02:05:23:10 - 02:05:44:20 Heather Trammell But I also realized that, you know, not everybody funny enough, not everybody wants to meet me. You were right. You know, sometimes people are just going to the grocery store. Sometimes they're just playing with their kids. Sometimes they are just pumping gas. Just leave me alone. But they really don't want to talk about this one.   02:05:44:22 - 02:05:54:16 Erin Croyle I know. I think I talked about this with somebody else. I just wish there was like a sign or something. We could give each other a support. Those moments because I know, right. Some sort of.   02:05:54:18 - 02:05:56:01 Heather Trammell You know, signal.   02:05:56:03 - 02:06:10:17 Erin Croyle Because I've had a moment where I've been in a store with my son and I've gotten the worst looks. Yeah. And I don't really want to talk to anybody with that about that. But I would love a comforting something from someone who gets it.   02:06:10:19 - 02:06:42:21 Heather Trammell Yeah. That there could be the like, look of disdain or disgust, that kind of thing. Or that could be the pity book. I feel so sorry for you. Look. Or or a to that would be the. Oh, isn't she sweet? Look kind of thing. I'm like, Well, yes, I will tell you, she is actually very sweet, but she's also 21 and you can say hi.   02:06:42:23 - 02:06:58:00 Heather Trammell She may say hi back. She may not, you know, I mean, she she's not just a cute stuffed animal, you know? I mean, she's not just a cute little thing. She's a person, right? Like a real person. And so those can be very difficult times. I agree. Yeah.   02:06:58:02 - 02:07:04:03 Erin Croyle And I sometimes wonder, I don't know about you and this is really bleak, so I'm going to ask a happy question after this.   02:07:04:05 - 02:07:05:10 Heather Trammell Okay.   02:07:05:12 - 02:07:31:14 Erin Croyle People make choices when they find out their child has a disability and it's prenatal and that's their choice. I wonder, though, how they feel when they see our kids. I wonder how I would feel had I made that choice and I wonder sometim

The back to school grind is tough for everyone, but it’s over in a flash and parents get a breather during school hours. Except when they don’t.  The parents and caregivers of students with disabilities live in back to school mode all year long. It’s almost like Santa preparing for Christmas. The first day of school is the main event, but elves are busy all year long. Come to think of it, Santa might have it easier.  This episode is here to make things easier for families. The Center for Family Involvement’s Blind and Vision Impaired Specialist Dawn Pfeifer-Snow supports countless people with questions about school. She’s also a mother with lived experience navigating school.  Meg Druga taught in an inclusive preschool classroom for 11 years. She is an Early Child Coordinator with the Training and Technical Assistance Center (TTAC) at James Madison University. She’s also a Determinator with I’m Determined. To learn more about that program and its origins, check out our episode, “Why We Need More than Inclusion.”  Between the host and guests, there are tips, insights, and validations that everyone can use, from the Pre-K set all the way to high school and beyond.   Take a listen and please, share your experiences with us!   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.      TRANSCRIPT   01:00:07:17 - 01:00:32:11 Speaker 1 Welcome to The Odyssey. Parenting Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores the turn our lives take when a loved one has a disability. I've been on this less traveled road since 2010, when my first child was born with Down's Syndrome. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:32:13 - 01:00:58:09 Speaker 1 This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we don't shy away from the tough stuff either. Among the hardest of the hard for many families is school. The back to school vibe is completely different when students have ideas and five offers. I see this with my own three children.   01:00:58:11 - 01:01:19:15 Speaker 1 For my younger nondisabled kiddos, it's a breeze. We just get the stuff they need from their school supply list. Let them know their teacher and room number and poof, off they go. For my oldest, who's now a teenager. The fall back to school prep starts in January. His monthly IEP meetings shift their focus to the next academic year.   01:01:19:17 - 01:01:40:19 Speaker 1 School supply shopping consists of my staring at a long list, wondering what he'll actually need and use in the weeks and days leading up to the first day. I'm in touch with his school team so we can make the transition as seamless as possible. He needs help getting to all the new classrooms, not just on the first day, but until he gets the new routine down.   01:01:40:21 - 01:02:03:04 Speaker 1 And it doesn't stop after the first day. There is constant communication as my son and his new team figure each other out. And of course, in middle school and high school, these transitions come each quarter with new classes and teachers. Unfortunately, the challenges I face with my son are just a drop in the bucket compared to what many caregivers juggle during the school year.   01:02:03:06 - 01:02:27:08 Speaker 1 That's why I've asked Dawn Pfiefer-Snow and Meg Druga to join me today. Dawn is the Center for Family Involvement, Blind and Vision Impaired Specialist and the Family Engagement specialist with the Virginia Deaf-Blind Project. She's supported countless families with back to school questions and other issues. She's also a mother with lived experience, navigating schools and so much more.   01:02:27:10 - 01:02:53:06 Speaker 1 Meg taught in an inclusive preschool classroom for 11 years. She's now an early childhood coordinator with TTAC the Training and Technical Assistance Center at James Madison University. She's also a determined eater with I'm determined. And if you want to know more about that program and its origins, check out our episode Why We Need More than Inclusion. Now, both of you, you're here.   01:02:53:07 - 01:03:08:05 Speaker 1 I'm so excited. I think this is a very important conversation for parents and caregivers to hear because it is such a tough time. I would love to hear from you both to just give a little context of who you are and why they should listen to you. Meg, can we start with you?   01:03:08:07 - 01:03:37:09 Speaker 2 Sure. Thank you, Erin, for having me today. I am very excited to be here, as Erin mentioned. My name's Meg Druga. I'm an early childhood coordinator at the Training and Technical Assistance Center. I've been in my role for almost three years. I'm getting ready to come in to my three year anniversary. Prior to that, I was an inclusive preschool teacher in the school division in which we had 100% inclusion in our preschool program.   01:03:37:11 - 01:04:07:17 Speaker 2 I am duly endorsed in early childhood and early childhood special education, and I came into my career a little late. I actually started down this path in my path. I was going to school in agriculture and applied economics about halfway through my college experience. I realized that's not what I wanted to do. So I literally came back home, showed up on my parents doorstep, and started trying to figure out what I wanted to do with life.   01:04:07:17 - 01:04:33:03 Speaker 2 And through that journey, I happened to bump into an amazing early childhood special education teacher who told me that she needed a new educator in her classroom and so brought me into it. And after the first day of school and her newly inclusive preschool classroom, because it was a new program that Virginia was running, I fell in love and decided that that's what I wanted to do.   01:04:33:04 - 01:05:03:07 Speaker 2 So for three years, I worked as a peer educator and went back to finish my degree in early childhood special education. So I fell in love with early childhood special education and realized that that's where I want to be. I'm also a mom of a very spunky eight year old, and people often hear me talk about Lizzie. We live in a beautiful rural community with my husband and our dog, Bo.   01:05:03:09 - 01:05:25:13 Speaker 1 I love it, Meg, and I love a good origin story because, Dawn, I don't know about you, but I was a journalist before this and I didn't know much about disability or any of it. And then I have my son and that's why I'm here. I'm always curious when someone's not really affected by disability, what brings them into the field, what brings them into the profession, whether it be special education or policy?   01:05:25:15 - 01:05:35:23 Speaker 1 So hearing that and hearing that you fell in love in a classroom, just kind of it makes my heart sing because those are the people who we want teaching our kids anyway, don't we?   01:05:36:00 - 01:05:52:23 Speaker 2 Yeah. Yeah, it was I always say it was a life changing moment for me. That class I still carry with me and they have graduated now. But in my mind they're still these three four year olds that forever shaped my career path in my life. And I'm always very grateful.   01:05:53:00 - 01:05:55:13 Speaker 1 Dawn, can you tell us a little more about yourself?   01:05:55:19 - 01:06:18:12 Speaker 3 Yeah. Like you, Erin, I love to hear the why and the how of people getting into, you know, the disability world, for lack of a better, better word, much like you, because I've heard you share your story as well. Erin, I had really never been around anyone with disabilities before. I remember one young man in high school, and that's it, right until I had my daughter.   01:06:18:17 - 01:06:38:13 Speaker 3 And that's really when people ask me, you know, what do I do? That's usually my first thing. I'm a mom first, right? I'm a mom. And then I also provide support to families who are have loved ones who are blind, visually impaired or deaf blind. But yeah, my daughter brought me into this work and, you know, I'm forever grateful She likewise changed my life for the better.   01:06:38:15 - 01:07:06:07 Speaker 3 So, yeah, So I'm a mom first. I always identify as having three children with visual impairments. So my oldest biological daughter is 21, freshman in college. She's blind. She's identifies on the autism spectrum, has hydrocephalus and a seizure disorder. My youngest biological child is getting ready to go off to her freshman year of college, and she is blind in one eye and also has ADHD.   01:07:06:12 - 01:07:32:01 Speaker 3 Totally different eye conditions. And then I was blessed to have a bonus daughter stepdaughter, I call her bonus daughter, who is forever 18 and seven, and she had a genetic degenerative neurological condition that caused her to lose her vision first. And then it affected all of her other abilities over time. But when she was young, she had already lost all of her vision, which also led me to my wonderful husband.   01:07:32:03 - 01:08:11:04 Speaker 3 So I've been doing this work now for probably 19, 20 years, is when I first started really reaching out and trying to connect with families and found myself providing support to other families because I was doing was attending and taking so many trainings and workshops to educate myself and as I was establishing a network of support for myself, I was very quickly finding that even parents of older children had not taken a lot of these trainings and had not were not aware of their rights, were not aware of all the various options that they had.   01:08:11:06 - 01:08:28:24 Speaker 3 And so I found myself naturally helping other parents really early on. So I would say 19, 20 years of doing this work informally and going on 12 years with the Partnership for People with Disabilities, doing this work in a more formal way of helping families navigate the services and systems.   01:08:29:01 - 01:08:52:16 Speaker 1 Yeah, it's interesting. So many people I meet like you and I don, I think we know how hard it's been for ourselves and we just want to make that easier for others and just so we can enjoy our kids. And I think that's why I really wanted to do this special. You know, I think so many people equate back to school for parents, especially mothers, frankly, is like, oh, your kids are back in school.   01:08:52:16 - 01:09:10:24 Speaker 1 You can take a break and take a load off. But when you have a kid with a disability, it's a whole couple notches up. And so I really would like to start with what do you recommend to ease that transition back into school? Dawn, I want to start with you because you have older children, but also you've been through the whole spectrum of it.   01:09:11:01 - 01:09:13:06 Speaker 1 So what what tips do you have there?   01:09:13:08 - 01:09:42:09 Speaker 3 So easing back into school, if I was to look at it from just the summertime and preparing for that first day of school, my answer is going to look very different versus preparing for that upcoming year, because I start that in the winter of the previous year. But looking at it from the perspective of from the summertime, what we have always done and what I found was very helpful was, you know, orienting to the space.   01:09:42:09 - 01:10:13:09 Speaker 3 Now, granted, I'm thinking of this from the perspective of having a blind child, but really, I think that applies to all, all children, you know, having a chance to go in, not necessarily on back to school night because that's busy is crazy and you have very limited time. But, you know, carving out that time when the school is more empty, quiet, just the teachers are in there working on their classrooms and having a chance to orient to where your classes are going to be, even in elementary school, if that's just one class, it might be a different class.   01:10:13:14 - 01:10:32:05 Speaker 3 And another thing that was always very helpful was arranging a team meeting with all of the teachers that were going to be involved for the year. That way you gave everybody an opportunity to meet each other, talk about supports that might be needed, help my child feel comfortable and ask questions that needed to be asked.   01:10:32:07 - 01:10:56:10 Speaker 1 I completely agree. For context, my son is going to be 13 and going into seventh grade. And yeah, those team meetings. Not only do I ask for one ahead of school, but in my son's IEP. I have so many meetings per year and I typically try to frontload those meetings because that transition time is difficult. So like maybe two meetings in the first month and another meeting in October.   01:10:56:10 - 01:11:22:13 Speaker 1 And just because any kid transitioning is difficult, you add a disability into the mix and those transitions are so much harder. You add intellectual disability into the mix and just finding a classroom can be hard. And so I totally agree. If you can work with that school team in a range of time to get your child in before the chaos, is there, it is so useful.   01:11:22:15 - 01:11:42:23 Speaker 1 Another thing I've tried to do too, sometimes that first day is so busy. The overwhelm component is there either request that he comes before the crowd or after the crowd. And with middle school, because you have this 20 minute window before school starts, they allow me to go ahead and take him to his homeroom so he can like avoid that chaos and yelling.   01:11:42:23 - 01:12:16:15 Speaker 1 I mean, middle school is loud and chaotic. And then one other thing before I go to IMAG, something that I've always done, I do sort of a resume for my son. So his team, since he has limited expressive language, I want his team to be able to know who he is. So certain things that might set him off, certain things that might help him if he's having a tough time, you know, his favorite songs that can help in transitions, helping him get water, reminders for the bathroom, who his siblings are, because the teachers, if they don't know you, they're not going to know who your child relates to.   01:12:16:15 - 01:12:38:08 Speaker 1 And if he's not able to say it, our children can miss out on a lot of those first day conversations. If the team isn't aware of the bigger picture of who this child is. So I think especially if your child has communication difficulties, really helping to prevent any sort of missed items so they can be involved is really important.   01:12:38:10 - 01:12:40:03 Speaker 1 Meg, how about you?   01:12:40:05 - 01:13:04:15 Speaker 2 I feel like everything that both of you guys were saying, I'm just nodding in agreement. First of all, my perspective is a little different because I have preschoolers. And so I recognized that parents, whether your student had a disability or not, because we were an inclusive classroom for many parents, they were handing their child off to me for the first time of handing them over to somebody else.   01:13:04:17 - 01:13:36:21 Speaker 2 And that's scary in general when you have a student with a disability. I think that that anxiety that the parents feel and that it's just it's so it's ten times more and so we worked really hard on setting to bring down that anxiety a little bit. I always open my classroom before the school year. I think it's important to request that they come in and see the classroom, see the space, get acclimated to the space.   01:13:37:01 - 01:14:00:21 Speaker 2 For example, I had a student one year who had various mobility needs, and so the way I thought I had arranged my classroom and the centers, I thought it would work well. And then the student came in and I realized, oh my goodness, they can't access the block center easily or the easel that I placed here is really preventing them from getting to their cubbies.   01:14:00:21 - 01:14:29:18 Speaker 2 And so we needed to make some arrangements. So it helped me figure out ways that we can even just adjust being so that so that the burden or not the burden, the fear of that access of not having access is gone so that we make our environment completely accessible. It gave the parents and I am I always invited the school team that be working with the with the students as well, including my peer educator.   01:14:29:20 - 01:14:49:20 Speaker 2 It gave us time to chat, to get to know each other and to start building that relationship. As an educator, I think one of most important things is to build relationships not with just our students, but with our families as well. And so it gave them a chance to get to know me a little bit better and gave me a chance to get to know them.   01:14:50:00 - 01:15:10:07 Speaker 2 I think, Erin, you were talking about giving the resumé. I used to have them fill out this form of what's the favorite food where you know, what shows to be like with their toys, like who lives in the house. Siblings names are one pager on the undetermined website can also be a great tool for that and you can fill it out as a family.   01:15:10:07 - 01:15:35:18 Speaker 2 So you can talk about here's the family strengths, here's our family's preferences, here's our family's interest. Then here are our needs. Like this is our need of how we need communication right now going into this, how we need to know that services are being met. I know that as a parent myself, like when I drop my child off to daycare for the first time, I needed a picture of my child smiling within the first hour.   01:15:35:18 - 01:15:54:03 Speaker 2 If I could get it. And so even just stating that, like I need at least one picture during the day so I can see my child is safe and is doing okay, and so you can fill that out on your student, but fill it out as a family as well, I think is really important.   01:15:54:08 - 01:16:17:04 Speaker 1 That is a really great idea. I think, especially with the younger kids, because you do need that context. And I also want to say you mentioned the word burden, Meg, and that is something that I talk about a bit because I think people outside that don't live our lives see our children as a burden. But I think in the context you used it in the context that we feel it our children are never a burden.   01:16:17:04 - 01:16:28:03 Speaker 1 It's the it's the lack of universal design, It's the lack of access, it's the lack of ramps, it's the lack of understanding society's the burden, not our children.   01:16:28:05 - 01:16:50:01 Speaker 2 Yes. Yes, it is. It's and it's more of the burden of how you guys are feeling of all this is one more thing that I have to worry about, that my child's not going to have the access that every other child in that classroom has. And so to take that burden of worry off of the parents, I think is important.   01:16:50:01 - 01:17:12:22 Speaker 2 I was recently in a training in which our presenter made and I wrote it down because I have been carrying it with me now, made a wonderful point of our children can be ready for anything that we put them in. It's the environment that we have to make sure that is ready for for our children, and that falls on us as the educator.   01:17:12:24 - 01:17:34:21 Speaker 2 And I love that. So that's making sure again that we are able to access the blocks and the cubbies that we have, everything that we need for all of our students to be able to participate and the support that they need and that we're making our families feel welcome and comfortable in the environment as well.   01:17:34:23 - 01:17:58:00 Speaker 1 Absolutely. I have one more question that has to do with early childhood that I was just having this conversation with my family last night because we were talking about I'm determined, we were talking about self-determination and I was talking about regrets. And one of my biggest regrets with my son is his amazing preschool teacher. She was amazing in the most understated way.   01:17:58:01 - 01:18:22:18 Speaker 1 And she confidently told me, because if you have a disability, you can start in Virginia preschool at the age of two. And so he did. And he wasn't quite potty trained yet. And it was a huge source of anxiety for me. And she confidently said, I got this, just send him in his underwear. But I was so worried about him having an accident on the bus that was like, no, he needs to, you know, No, I want to.   01:18:22:20 - 01:18:43:12 Speaker 1 And it's a huge mistake because an accident on the bus in preschool is much less of an issue than an accident on the bus in grade school or fourth grade developmental delays just mean that that stuff comes later. What do you wish you could tell parents to ease their minds and have a little trust in that school team?   01:18:43:14 - 01:19:16:17 Speaker 2 I always ask them to let me know their concerns. If your child having a bathroom accident is really causing angst and anxiety, be honest with the school team because then I can say we got this because not to get into a potty training discussion, but early childhood teachers. Bye bye trade. Potty training is what we do. And one of the most meaningful IEP meetings I think I sat in is when you get to the the part and you say, okay, where are the parental concerns?   01:19:16:19 - 01:19:42:05 Speaker 2 And the parents pulled out a list multiple pages long. It was so important for them to list all their concerns, whether it related to the IEP or just a concern for their child in general. And I think especially as an early childhood educator, we we have that time to sit there and listen to them and say, all right, what can I take off of you?   01:19:42:05 - 01:20:02:01 Speaker 2 Because that's really that's a lot to say. Okay. Let let let us absorb a little bit of that because we got this. So I just would say be open and honest. And I know that's easier said than done. Has that. That can also be really anxiety provoking if you feel like you can't be open and honest again with your words.   01:20:02:01 - 01:20:13:22 Speaker 2 Then again, kind of all, I keep going back to the one pager, but that's where maybe those needs may be a really good place to write down some of the concerns that you may have.   01:20:13:24 - 01:20:37:21 Speaker 1 I totally agree. And I think both one pagers and IEPs are where you need to have things and the important thing is there's a difference. The IEP is legally binding. The one pager is not. So anything that you want to ensure absolute happens at school has to be any IEP. The one pager is a really good resource to just get to know a student.   01:20:37:21 - 01:21:08:21 Speaker 1 One thing that I do for my son is, you know, you talk about writers and rock stars or movie stars, how they have the requests of ridiculous only Green Eminem's or only green and blue because they want to make sure that whoever is handling it read it. So I actually put a couple nuggets as like my son's writer to see if someone reads it, because there's a couple of really cool things that would be absolutely brought up in conversation if it were read and there's been quite a few times it hasn't.   01:21:09:00 - 01:21:19:11 Speaker 1 And so I find that that's important, I think as well. And I want to move to talking about the IEP. How do you prepare the team? How do you prepare the IEP for that new school year.   01:21:19:13 - 01:21:43:12 Speaker 3 As I mentioned earlier, is that I start preparing the winter ahead of the school year. So if my daughter's starting into first grade next year, I start preparing the winter of her kindergarten year. For me, what I always found to be very helpful is and this is kind of both, it's it's helping prepare for the IEP team, but it's also preparing the special education teachers that are involved in her plan.   01:21:43:12 - 01:22:04:10 Speaker 3 And then ultimately, it'll help the teachers, you know, as we get closer to the upcoming school year. But what I would do is I would go on to the Department of Ed's website and look up the curriculum and the standards of learning for the upcoming year. Some people might think that I'm a little over the top with that, but it was so helpful.   01:22:04:12 - 01:22:25:23 Speaker 3 I would print it out for each subject and then I would go through it and make notes. I would think about, okay, how is my child going to access this? How is she going to learn X, Y, Z in the course? You can't address every single thing, right? So ultimately, I would try to narrow it down to the heavy hitters of what I thought was important and it would make the biggest impact.   01:22:26:04 - 01:22:52:22 Speaker 3 A lot of times it covered many things. Then I would start researching what would a goal look like, right? And I would make notes on ideas for goals and I may not write it out word for word, but I would have a bullet list of what some of the goals might look like. I would research what kind of devices or technology low tech 3D items might be helpful in supporting her, learning the various things.   01:22:53:00 - 01:23:18:01 Speaker 3 And again, I would make a list. And that list, when we had our IEP meeting, it started out with when we had our IEP meeting, I would take that list with me. I would ask our teacher for the visually impaired because usually that with a student who is blind or visually impaired or a deaf blind, the teacher for the visually impaired is often in charge of ordering a lot of the materials, educational materials for the student.   01:23:18:01 - 01:23:40:20 Speaker 3 So I would hand a list of items to her to order and we would discuss all of it during the IEP meeting. But it got to the point with our team where we just became so comfortable with the routine that the teacher for the visually impaired and I would have a pre-meeting. There were a couple pre meetings where we would discuss all of that and even craft out some ideas for goals.   01:23:40:20 - 01:24:07:21 Speaker 3 And then that way when we met as a full team, it just went a lot smoother and was a lot, a lot shorter. But that was really, really, really made a huge impact in many ways. One helping to prepare for the IEP too. I knew what my daughter was going to be expected to learn. Three The team knew I was an involved parent, right?   01:24:07:23 - 01:24:12:15 Speaker 3 So that's the way I handled it.   01:24:12:17 - 01:24:45:03 Speaker 1 Dawn, this is such a great strategy. I'm always taken aback by how, even though I've done all these trainings and I've been doing this for a long time and conferences and books, I learn something new and sometimes it's from someone I've known for years and we've just never talked about this. I wonder, though, what about those students who aren't at grade level who aren't going for the standard diploma, who are in middle school but doing kindergarten level work because they're just not there yet?   01:24:45:09 - 01:24:50:03 Speaker 1 How can they utilize the things that you're talking about?   01:24:50:05 - 01:25:07:20 Speaker 3 I would still say looking at the standards of learning overview, right? So I just want to be clear that we're not talking about looking at like a nasal test. You know, you're looking at the standards of learning overview, you're looking at the breakdown of the curriculum because I can't remember the details, but I could pull different things from each document.   01:25:07:24 - 01:25:28:09 Speaker 3 But taking a look at that and then and then thinking about what makes sense for my child. And so maybe it's not everything that's on there. Maybe it's only one thing from each section. How would that be modified for your child so that it made sense and was meaningful? That's the way that I think you could approach it that way.   01:25:28:09 - 01:25:41:20 Speaker 3 You're still looking at what is everyone else in the classroom or what does everyone else at that grade level being exposed to and you finding a way to make that meaningful and inclusive?   01:25:41:22 - 01:26:01:17 Speaker 1 Meaningful is the key word there, Dawn. I think a lot of times and I've written about this and I've talked about it, we do inclusion for the sake of inclusion without providing the supports and materials needed for it to truly be inclusive. And I think meaningful is key. Meg, what do you see in your work where you see meaningful inclusion.   01:26:01:19 - 01:26:39:19 Speaker 2 Meaningful inclusion? I mean, it is more just than to have a spot in the classroom. It's that and meaningful intentional modifications and supports and opportunities for interactions. When Dawn was talking, I was thinking about a student that we had one year that when it was time for her to start transitioning out preschool into kindergarten, there was a large discussion around Lori and moving either from my fully inclusive preschool classroom at her home school to a different classroom, a more self-contained classroom in a different school, the parent said, Absolutely not.   01:26:39:20 - 01:27:05:12 Speaker 2 We want her to continue to be in her home school. I said, Absolutely not. She needs to continue to be in her home school. And there were questions of, well, then how are we going to write an IEP to address the needs with the swells? So then what I did is I got with her new case manager for kindergarten, and we looked at the soils and we looked at the one that sticking out my mind is the literacy of the well.   01:27:05:12 - 01:27:34:20 Speaker 2 And we were talking about learning about characters and plots and settings and we're like, okay, we can do this. It's just we're going to modify it and we're going to adapt it. We are not changing the content that she is learning. We are modifying how it's being delivered. We are modifying how she's going to demonstrate that she has learned it, but she is still learning the same information and that her peers are learning.   01:27:34:20 - 01:27:58:01 Speaker 2 And I think that we talk about IEPs and we talk about inclusion. We are providing the same opportunities. It's just the way that it's being presented. We all learn differently. I mean, I take that information much different than my husband. My husband is a walking calculator in his head. I'm the one that still pulls out my phone when we have to tip somebody and typed in the calculator.   01:27:58:01 - 01:28:19:20 Speaker 2 And so I think we often forget that we all have very different learning modes in the ways we learn. And so I think for parents to ask and maybe to look at the Sols and do what I love, Hamilton said that she went through them and looked at them. I had a guardian one year, two years in preschool.   01:28:19:20 - 01:28:43:03 Speaker 2 I get I love most of the time I had the children two or three years, but she had a binder and when I had her grandson, the binder was really, really small. I just went to his fifth grade graduation and in May, and she said, The binder is now this big. But she kept everything. She kept notes, she kept her own notes and documented what was said in the IEP meetings past IEP.   01:28:43:03 - 01:29:06:04 Speaker 2 She came with questions. She did her research. When Dawn was talking earlier, a tip I thought was every single meeting. We said, okay, well here, would you like a copy of your rights? She said, Absolutely. I know parents are, and family members may get tired of having that. I don't know if it's a purple booklet or not, but a copy of the rights.   01:29:06:06 - 01:29:11:08 Speaker 2 But I think saying, Yep, I want it because I know that I have rights.   01:29:11:10 - 01:29:12:01 Speaker 1 It sends an.   01:29:12:01 - 01:29:42:08 Speaker 2 Important reminder sometimes to the IEP team that as family members you are an equal part of that IEP team. Your voice matters, your questions matter, and and it's not educators versus families. It is truly a equal partnership and a team. And I think sometimes the same. You know what I have I guess I have rights too, and I have questions about that or I I've looked at these souls and I want to figure out how was this goal that we are creating?   01:29:42:08 - 01:29:46:17 Speaker 2 How's that going to support my student and meeting that?   01:29:46:20 - 01:30:16:11 Speaker 3 So I was just going to add one little thing to that as it just bubbled up in my mind. It's one of my big passions, but something you said triggered it. When we think about looking at those standards, we're thinking usually math, science, history, all of that. But almost every division or every system across the United States, somewhere on their website, or at least if they don't have a piece of the website, they've got it somewhere.   01:30:16:13 - 01:30:37:15 Speaker 3 Is also there standards for technology instruction. And that is in this day and age, just as important. So I just wanted to add and I'll talk about that I'm sure some time during our conversation, but I just wanted to add that other little tidbit is when we're thinking about looking at those standards is don't forget about the technology standards.   01:30:37:15 - 01:30:38:13 Speaker 3 Right.   01:30:38:15 - 01:30:57:18 Speaker 1 What struck me, Meg, as well is you pointing out how important the family is on the team. I like to say that the most important member is the student. The second most important member are the parents or caregivers that are involved because they're the ones that live it and experience it and see it.   01:30:57:20 - 01:31:25:10 Speaker 2 I think that, yes, that the student is the most important member. I, I had somebody asked me recently, how many times did you have a student show up at your IEP meeting? So I said every single time, because I think even in preschool, having the student be present, I was that teacher that be walking down the hallway with like all these boxes of manipulatives and toys and coloring things because we were going to play if we had to.   01:31:25:12 - 01:31:48:03 Speaker 2 Having the student present brings back the human aspect and brings back why we're here and that that's important. You know, I don't take my child to the pediatrician's office without my child present there. They're there. They're having a conversation at the pediatrician with me. And I think that the child should be present in the IEP process as well.   01:31:48:03 - 01:32:12:06 Speaker 2 And even in preschool. This is a plug for a different time. They can start being involved. You know, again, they can say during their present level, their strengths. They can say, Hey, I'm really good at running, or they can point to things that they like, or they can show pictures or they can draw, they can have a voice in that IEP process.   01:32:12:06 - 01:32:19:03 Speaker 2 And I don't think it's too young to have them start having a little bit of a voice in their IEP meeting.   01:32:19:05 - 01:32:55:15 Speaker 1 I totally agree. I think having your child, your loved one students attend from the get go is really important and I want to remind people that they might not be able to participate. But being there is important because I know sometimes I'll hear stories about a parent helping a child do a whole PowerPoint or, you know, presenting at their IEP meeting, and that stuff kind of hurts some people to hear, If I were to do that for my son, that would be just more work on me and he would probably fight it because of overwhelm or whatever.   01:32:55:17 - 01:33:13:15 Speaker 1 But being there is enough. I hope that whoever's listening when you hear this, you take what you need from it and you don't feel like you're not doing enough. Because I know that parents are doing enough and we carry the world on our shoulders and that's stress. And I wish someone could go back and tell me to enjoy my kid.   01:33:13:17 - 01:33:23:11 Speaker 1 So I think everything you're hearing now, okay, yes, try to do it, but also do what you can and just be a parent and live your life, too.   01:33:23:13 - 01:33:45:16 Speaker 3 I'm glad you said that. I wanted to add how important that is to recognize as well. There were years I've always been a really involved and pretty intense parent, but there were years speckled throughout where I didn't do quite as much for whatever reason, what whatever was going on with our family, you know, there would be a couple of months period where I just had backed off.   01:33:45:20 - 01:34:05:16 Speaker 3 I needed to I needed time to kind of recenter myself. I was noticing maybe something not going well at home or whatever, the kids, whatever the reasons. So I just wanted to validate that statement and how important it is to also recognize your own mental health and your children's mental health through the process.   01:34:05:18 - 01:34:23:17 Speaker 1 Yeah, I think we forget that sometimes we push and I have to remind myself how stressed I feel and I'm able to say that and verbalize it, but my kids can't. And so when they're like, I don't want to do it or, you know, behaviors, communication. We have to remember this is hard for them, too.   01:34:23:19 - 01:34:56:24 Speaker 2 And I'm glad you guys brought that point to because I wanted to make a point. And again, my perspectives, early childhood, perhaps sitting at a long IEP meeting for children for any early childhood age student is really tough. And so as a parent, if you're feeling uncomfortable that your child may start to struggle and may start having communicating that they don't want to be there anymore and then maybe work out with the team, hey, can can we figure out a way to do this where I can have somebody come pick up my child or can we take a break?   01:34:57:03 - 01:35:19:02 Speaker 2 There were times that I would ask the family or, Hey, are you comfortable if I get my educator to come and we'll take the child back down to the classroom OR do we just need to go to a different space so that when some discussions need to be had, that the parents then also feel like they can fully focus on the discussions that are being had.   01:35:19:02 - 01:35:27:22 Speaker 2 So I think it's it's also finding the comfort level that's best for you and for your family and communicate that with the IEP team.   01:35:27:24 - 01:35:54:01 Speaker 1 Yeah, and I think it's very important for the students to be in the meetings. But sometimes parents caregivers need to discuss something with the team that the student probably shouldn't hear. Unfortunately, we do have to have those conversations, but having the student there, at least initially it does, humanizes it, especially if it's a contentious relationship. Which actually brings me to my next question, which is what are some of the biggest challenges you face?   01:35:54:01 - 01:36:15:18 Speaker 1 And I know that I had a really tough time when my son was in kindergarten and first grade. We have since moved, but we lived in Northern Virginia at the time and he was the first kid in his elementary school with Down's syndrome to be in the general ed classroom. Everyone else was put in an ID classroom, an intellectual disability classroom that was literally the name for it.   01:36:15:20 - 01:36:40:00 Speaker 1 And so in kindergarten, it was a little bit of a fight to get him in general. ED But it happened. And I remember having conversations with the speech therapist who was not so gently pushing and saying, Oh, what about the classroom and the first grade team? I would get calls almost every day to the point where I still get a call from the school, and I think it's going to be negative.   01:36:40:03 - 01:37:01:23 Speaker 1 It really felt like they were building a case to move him to a self-contained classroom. Thankfully, I have done, like you were saying, we have the training and the education and the time to advocate strongly and fiercely. But I know so many parents who want their kid in a general ed classroom who are denied it. They don't even have a chance.   01:37:01:23 - 01:37:24:18 Speaker 1 The school, their interpretation of the law is that this student is self-contained and maybe they push in for this and this and this and that in the schools mind inclusion that's a personal challenge and I handled it by being tough. But that was years ago and I still feel that it still hurts. And part of the reason I do this work is because I know families are still dealing with that.   01:37:24:18 - 01:37:38:18 Speaker 1 And it's devastating to me that we can't include kids in a meaningful way or just at all. So, Dawn, what are some of the challenges that you faced and how did you handle them?   01:37:38:20 - 01:38:00:03 Speaker 3 So I have to laugh because we had the same experience, ironically, with a speech therapist when we were trying to decide on or when we were having our transition meeting from early childhood to kindergarten, you know, and I was pushing for the regular education classroom and the speech therapist was the one who was the most vocal. So I just think that's kind of funny.   01:38:00:06 - 01:38:37:24 Speaker 3 In fact, when my daughter graduated, I actually tried to look her up because I would just send her a letter. But anyway, that was a big challenge. When I think back about it, trying to advocate for her home school and, you know, the mainstream classrooms versus self-contained. But I think the biggest challenge that we had was technology, the accessible technology, accessible digital materials and access to a qualified instructor, someone who understood the software that she needed to use as well as what was going on in the classrooms, like understanding it from an educational standpoint.   01:38:38:01 - 01:39:02:19 Speaker 3 There were a lot of instructors that teach the assistive technology that she uses that are not involved in education and that just we did try that, but that didn't work out very well. You know, I started advocating for instruction in the technology I'm speaking about is screen reading technology for people who are blind. And there's also magnification software that's very similar for people with low vision.   01:39:02:23 - 01:39:41:10 Speaker 3 So I started advocating when she was in elementary school. Really, if I think back about it, I wish I would have pushed harder for more intense instruction. She would get like a couple of weeks in the summer. You know, we would generally get that in elementary school during my extended school year services. And of course, if she didn't use it and nobody could support her throughout the school year, she lost the skills and so we'd have to revisit it when she entered sixth grade, that is when there were several school divisions in Virginia who had started the pilot program of going into the I think it was the 21st century learning skills or learning platform   01:39:41:10 - 01:40:03:21 Speaker 3 at that time is what it was called, basically where students were given laptops and they started to move to using all digital materials, digital assignments versus paper assignments, and nothing was accessible with her screen reader. That was the one time it really got intense and I had to start, okay, let me buckle down and make sure everything's in writing and advocating keeping my documentation.   01:40:03:23 - 01:40:25:14 Speaker 3 And it was a year and a half before it was resolved, which really when I think about what some other parents have to deal with, that wasn't very long. But I swear that year and a half it almost broke me. That was the toughest year. Those were the toughest years. I really thought I was going to have the breakdown.   01:40:25:16 - 01:40:43:13 Speaker 3 I don't think there was a day that went by that I didn't cry. A yanked my daughter out of school, moved on to homebound, eventually ended up having to get attorneys to get it resolved. And we did. They settled with us and we ended up getting everything we needed. And they put things in place to correct the actions within the division.   01:40:43:15 - 01:41:06:24 Speaker 3 But I wasn't going to back down. You know, my daughter was sitting in a classroom not understanding what was going on and not having instruction and even how to access the things that she needed. So. Right. I don't know. That was I kind of lost sight of your question, Erin, but that that was kind of that was the toughest period of time for us in how we handled it.   01:41:07:01 - 01:41:31:17 Speaker 1 It's wild to me, Dawn, because your story is one of many. These are matters of access and families and students aren't even able to access education. I know. I mean, we think about our personal examples, right, because of what we live in, our lived experience. I mean, you think about students who need nursing support during the day, but you have a nursing shortage.   01:41:31:17 - 01:42:08:18 Speaker 1 So if there's no nurse, that student can't go to school. And that happens when we're talking about communication devices and the lack of understanding how to get those to students and finding something that actually works for a student, it's shocking. I constantly think about why we're not teaching American sign language in schools as a secondary language. We're turning to packs in all of these forms of communication, and when we have one, there are students who could use ASL, but instead we're doing cumbersome card things that they tell families, Oh, just take this home.   01:42:08:20 - 01:42:32:06 Speaker 1 Who who can live their life carrying around a deck of cards while you're trying to do something? I've tried it. It's ridiculous. Even the iPad sometimes to help. It's these ideas that are thrown without any thought or consideration for what our life is about and the things that started school that go beyond or the fact that schools just aren't accessible.   01:42:32:08 - 01:42:54:01 Speaker 1 Hearing loss and the fact that we don't have microphones readily available in schools at one point when my son was dealing with hearing loss and I was trying to get hearing aids, but it wasn't there yet, and the audiologist said you should have the school get an FM system, which for anyone who doesn't know, it's the system that helps amplify for a student with hearing hearing loss.   01:42:54:03 - 01:43:28:11 Speaker 1 And the school claimed that they don't use FM systems anymore when in fact they very much do and they're everywhere. And he uses one now, just these roadblocks that are there because of misinformation and this breakdown in higher education where our educators are not educated in special education and universal designs for living and learning. And here we are as parents and individuals, spending so much time fixing things that shouldn't be a problem.   01:43:28:13 - 01:43:43:01 Speaker 1 Okay, so now I'm just venting. But I mean, it's there. And I guess I just want to validate anyone who's listening, like everyone deals with it. And there are people trying to fix it. Meg, turning to you for some of the biggest challenges, I guess maybe you haven't faced, but you've seen.   01:43:43:03 - 01:44:06:09 Speaker 2 I wanted to touch base real fast on what you were saying about higher ed because I demonstrated this in the beginning, but I also adjuncts some here at James Madison University, especially for James Madison University, he has an inclusive early childhood educator program. So they are educating future teachers to be duly endorsed in early childhood and early childhood special education.   01:44:06:11 - 01:44:31:00 Speaker 2 And one of the things that I have been working with, with a group of students is understanding and making that universal design for learning nature and to set up your classroom so that if you have a student who is using a communication device or an alternative form of communication, it is not just that one student that is using it, but it's everybody.   01:44:31:00 - 01:44:55:11 Speaker 2 So we're not singling out anybody that we are really making a classroom that has a total communication system, whether we have corps boards, if we have pictures, if we have signs, if we have English language learners, we have multiple languages posted in our classrooms so that we're really working on making this space as accessible to everything single learner.   01:44:55:11 - 01:45:22:19 Speaker 2 And I think that's where when we talk about higher ed, that's where we really need to start, because one of the challenges I think that I experienced the most was transitioning students out of my classroom into kindergarten, into those general ed settings, because the teachers had not had the training and they didn't feel like they have the knowledge to support that.   01:45:22:19 - 01:45:50:01 Speaker 2 The students that were coming and that was causing them angst and anxiety. So we started having transition conferences in February and we would start breaking down what they need. And then I would even support the student a little bit into the beginning of the year to check in with the kindergarten teacher, to check in with the kindergarten case manager to make sure that things were put in place.   01:45:50:02 - 01:46:13:07 Speaker 2 If I had things that I used that if I could pass them along, I would pass them along so that things were consistent. But I think it's sometimes the lack of the lack of learning. We have professional development that lots and lots and lots of things in education. We haven't really touched base a lot on that universal design for learning and that support it.   01:46:13:07 - 01:46:20:07 Speaker 2 And I think that's something that as an education system as a whole, we need to work on and address.   01:46:20:09 - 01:46:51:13 Speaker 3 It benefits everyone. It makes me think of the handful of teachers that we've had experience with over the years and they always stand out that have had some of that training in a variety of ways. But you can tell and it it impacts and impacts everyone in that classroom. Everyone, when I think back, I could actually see it with the elementary school students as well with this one teacher that is popping into my mind, but they are naturally supporting each other as well.   01:46:51:15 - 01:47:17:03 Speaker 1 It's funny you say that, Dawn, because I remember when I moved. So I live in upstate New York now. We relocated from Virginia and when I moved and left that very much not inclusive environment and my son started elementary school up here. He got invited to a birthday party for the first time, and I truly believe it was because they could feel that inclusiveness from the teachers.   01:47:17:03 - 01:47:33:16 Speaker 1 The students did and they belonged. Whereas before he was in other. And it just is there. It's not just the practices, it's the mindset. And if we can shift those mindsets, that's what is that really huge shift?   01:47:33:18 - 01:47:34:19 Speaker 3 Absolutely.   01:47:34:21 - 01:47:36:12 Speaker 1 Yeah.   01:47:36:14 - 01:47:59:23 Speaker 2 And I think for me that's been one of the biggest challenges too. I am a self-proclaimed inclusion ist. I often don't know. I'm learning in my in my new position. I had no other kind of professional experience other than full on inclusion. My view, my my way of thinking of like, well, why can't we include them? Why can't we modify things?   01:48:00:01 - 01:48:25:21 Speaker 2 Why not? But I recognize that that's not always the mindset. And so I think one of the biggest challenges is overcoming that. I was thinking earlier about how we overcame one of the challenges. We were transitioning that student from preschool to kindergarten. In the kindergarten team said, Well, you have you have a peer educator with you all day long.   01:48:25:23 - 01:48:44:12 Speaker 2 And so they get that one on one support. And so what we did is that we took the preschool schedule, we took the kindergarten schedule, and we highlighted all the places that that student was really getting. One one support, which was very little. And then we looked.   01:48:44:12 - 01:48:45:18 Speaker 1 At.   01:48:45:20 - 01:49:10:08 Speaker 2 The kindergarten schedule and said, okay, well here, here that areas that the student would need support and oh, well, you know, one of them is just getting from the bus to the classroom and we have lots of adults in the hallway. So how can we solve that? Oh, and then look upon this. This will be solved by the speech language pathologist coming into the classroom and providing services.   01:49:10:08 - 01:49:32:05 Speaker 2 And oh, look, this is the time that the special educator coming into the classroom can support this. So it's really not this intense need. And then look at all the peer support. Let's let's look at the peers and the friendships that they have made and let's put a couple of those peers that can support the student into the classroom.   01:49:32:05 - 01:49:58:09 Speaker 2 And I think once you start looking at it from a different lens, that helped, but that shifted, it come causation of, well, there's no way we can support the student too. Okay, I think we can do that. I think sometimes it's just taking a step back, taking a moment and breathing and saying, okay, let's change the lens, to change, to focus on how we're looking at it.   01:49:58:11 - 01:50:22:08 Speaker 1 Something I will say to my son's school team over and over again is my son is going to learn more from his peers than he will from his teachers. So he needs to be included in a general, a classroom, a self-contained classroom is not what the real world looks like. So why are we doing this now? If school is to prepare them for life, then why are we putting them in this little bubble?   01:50:22:10 - 01:50:42:10 Speaker 1 I don't want that. So my son may never be at grade level. A student may never be at grade level. You can still modify the work and you can still have them with their peers, and that's critical for their life after school, which is much longer than your life in school. But it's hard for people to understand that this they don't live it.   01:50:42:12 - 01:51:07:04 Speaker 2 Well and their peers are the ones that are going to continue to follow them, not their teachers. Again, I think all these stories I'm telling, I'm thinking those of my students and in my mind, they're still preschool age where they're not anymore. They have outgrown the need for Mr. Ruga, and that is wonderful. But their peers at that same network of peers that follow them.   01:51:07:06 - 01:51:38:00 Speaker 2 And so I think it is important that we work on having that support from the get go. Research shows that inclusion and having inclusive environments builds more empathetic learning communities, builds an understanding for peers with and without differing abilities. It just benefits everyone. And I think that's the mindset that we have to start shifting towards.   01:51:38:02 - 01:52:04:07 Speaker 1 Yes, and their peers are going to be the ones hiring them when the time to come to employment happens. Inclusion in school is what will lead to inclusion in life. And it's interesting to Meg, you mentioned quite a while ago now, but you you reminded me of the handling of the baton from one year to the next. And Dawn, I'm curious if you had to do this every single school year, you have to do it all over again.   01:52:04:09 - 01:52:22:23 Speaker 1 And this is one of those other frustrations when we talk about universal design, simple things that you request. One, you're like, Hey, there's sensory issues. Can we put tennis balls on the bottom of the chairs so you don't have to hear that? Or, hey, can we get better lights than the fluorescent ones? Because that's really disruptive sensory wise.   01:52:23:00 - 01:52:39:00 Speaker 1 Not only does that benefit everyone, including the teachers, and if it was just a best practice within the school, you wouldn't have to redo the whole thing every year. I mean, it's like a broken don. Have have you felt that in your years.   01:52:39:02 - 01:53:06:15 Speaker 3 Now, which part? Yes. So I think that where I saw that broken record piece the most was in middle. I'm not sure why that was. I mean, yes, we had to revisit things every year, but and I saw this with elementary school and then again with high school is that those first couple of years in that school, it was definitely intense.   01:53:06:17 - 01:53:29:03 Speaker 3 But after a couple of years after like the first two years, the teachers, the up and coming teachers, most of them were already familiar with my daughter, you know, seeing her in the hallway and as she's changing classes or whatever and talking to other teachers and seeing her at events and things like that. And she was a very it still is a very social child.   01:53:29:03 - 01:53:46:14 Speaker 3 So everybody's her friend. And so a lot of times she knew these teachers that she was getting. And so there was a little bit of BPD in preparing, but not as much. And the other thing is same thing with the students. They had gotten to know her. Now we we moved to a different county when she entered high school.   01:53:46:14 - 01:54:09:03 Speaker 3 And so that was kind of like starting over in a new division. But as we got settled in the students, she was in their classrooms. They got to know where they were, the ones who could step in when there was a substitute teacher. Right. Especially as we faded out, the poorer support students would step in and be like, Oh my gosh, you're having a computer problem here.   01:54:09:04 - 01:54:27:09 Speaker 3 Let me let me help you with this. Or oh my gosh, did did so-and-so teacher might have forgotten to share the accessible document. And this happened one time that I remember. And my daughter is using her smartphone to text me from school. She's panicking, right? And then I get another Texas. Oh, no worries. So-and-so fixed it for me.   01:54:27:09 - 01:54:36:21 Speaker 3 One of the other students just, bam, got it done. Senate emailed it to her. It was taken care of. I don't know. Again, I've forgotten your question.   01:54:36:23 - 01:54:48:04 Speaker 1 No, you answered it. You did? It's. Yeah. How do we make sure the IEP is being followed? Dawn, I'm going to turn to you first. Again.   01:54:48:06 - 01:55:12:10 Speaker 3 This is actually become like a little bit of a concern for me in regards to the topic of homework. That was the best gauge for me in knowing whether her goals were being addressed. Maybe that was because so many of her goals were around literacy, because she was learning Braille and learning the Nemeth code, which is the Braille math code.   01:55:12:12 - 01:55:36:24 Speaker 3 And I'm thinking again, mainly elementary years is what I'm referencing to now. But having her work and doing that with her is how I was able to know a lot at the time if things were being addressed. Her communication skills also kind of gauging how that was improving. And I could tell based on the way she was responding to things if that was being worked on.   01:55:37:04 - 01:56:01:07 Speaker 3 Yeah, I mean, her work for me was the biggest part. And again, like kind of like I referenced earlier, I was a little bit over the top. People might have thought of me as a helicopter parent, but I felt like I needed to be to be able to know again if those goals were being addressed or not. Then as she got older, it was asking questions like always trying to know throughout all of the years what was being worked on.   01:56:01:07 - 01:56:19:05 Speaker 3 And I might have asked the teacher like, Hey, what are you guys doing this week at school? You know, I might ask on a monday or something like that. And then I'd ask my child questions about it. So having that conversation and then when things moved to digital as she got older, I kept things logged in as her.   01:56:19:05 - 01:56:40:22 Speaker 3 So I had access. I didn't do her work or anything like that, but it was my way of being able to see one. How things being presented to her too. Was she able to submit them? Was she able to complete them? How did she complete them? Where again, I didn't look at every single thing every single day, but at least every couple of days.   01:56:40:22 - 01:56:49:06 Speaker 3 I was as she got older, I would kind of check in on things to see how she was doing. Right. Yeah. Well.   01:56:49:08 - 01:57:14:02 Speaker 1 It's interesting you say that because I keep thinking about how different everyone's situation is. I have to look at my son's IEP, but I think I have that no homework is part of his IEP because it is really difficult to get him to engage at home and for my family, which I know is in many families, I'm not able to ask him about the school day when I say Hello, how was your day?   01:57:14:04 - 01:57:41:00 Speaker 1 He's like, Thanks. And the cutest way. Like, really happy to see me. Arlo, How is school today? Thanks. That's his answer. And it's amazing because in his way, saying it was good and so for me to have a conversation with him will show me nothing about what's going on. So in my case, it is monitoring. And unfortunately I've had situations where there have been services that he has not gotten because of, again, there's been a lot of shortages.   01:57:41:00 - 01:58:04:09 Speaker 1 We're living still through unprecedented times with the pandemic and it's really changed things. When you have a child who cannot tell you what's happening at school, it's it's another layer of vigilance. And I have to be completely honest. I'm a strong advocate and I care deeply. But that is something I really cannot keep up with. I just can't.   01:58:04:11 - 01:58:20:15 Speaker 1 He's my oldest of three, two other kids, even though I have access digitally to what he's doing at school with those, what, seven different courses, I can barely get my job done. So how am I going to do that? So, Meg, maybe you have the magic answer.   01:58:20:17 - 01:58:48:23 Speaker 2 No, I don't think I have the magic answer. I'm trying to just think I have found each family was different. Each student need was different, and my preferences changed over the years. I often tell people all the time when I became a mom, I became a much different teacher. I understood that need for communication and really clear communication more once I became a mom.   01:58:49:00 - 01:59:25:17 Speaker 2 I also I never like to keep a journal back and forth because as tone can be really perceived really differently. So I always encouraged families. If you have a question, let's talk about it on the phone. I had a family that wanted to know because their child was not able to communicate what they did during the day. And so we worked out a form that either myself or my para and then whatever related service provider came in to the classroom just really quickly, a circle.   01:59:25:17 - 01:59:54:10 Speaker 2 So if speech came, speech came and circled. Hey, I came today. This is the amount of time that I worked on. And then we would just say, just put go two or three. Like, what did you address today in the IEP? And so that that way the family could see that we were still addressing the IEP goals. We had a student one year that it was really important for us to keep track medically the number of changes, how much fluid the student was consuming.   01:59:54:10 - 02:00:20:15 Speaker 2 And so we had a separate form for that. And then scheduling weekly or biweekly, even five minute check ins on the phone with the family. I'm a communicator, so I always like to really have clear communication. We also did progress reports, not just your IEP, but because they were an inclusive setting. I said, Nope, we're going to take the same.   02:00:20:15 - 02:00:51:00 Speaker 2 We did this authentic data collection for all the students. So they're also going to be observed through this data collection site that we have, and we're going to track learning and development the same way we're going to track all students because development, child development is a continuum. So it just may be a little different where your child is on the continuum, but you're going to get the snapshots of, Hey, today we worked on this and here's a picture of your child doing this activity.   02:00:51:00 - 02:01:12:19 Speaker 2 And this is what developmental milestones that we worked on. But that's early childhood. And I understand that that's not that's not upper elementary or middle school or high school. So I think I think goes to communication and figuring out what works best for you and for your teen, I think, is that that's the best way to go about it.   02:01:12:21 - 02:01:42:09 Speaker 3 Yeah, I think that's important. I mean, that is going to look different for everyone. And just to kind of circle back around to what I was sharing about the way I approached it was that always checking every single day or every couple of days know if there was a comfort level there, and I felt like things were progressing then I wasn't having to look every time, especially she got older, I would pay more attention when I was concerned about something and thinking that maybe something wasn't being addressed.   02:01:42:09

An estimated 1 in 4 Americans has a disability significant enough that it impacts their daily life.  When the Americans with Disabilities Act was signed into law on July 26th, 1990 it was celebrated as groundbreaking legislation that would grant access to jobs, schools, transportation, and public spaces.  More than 30 years later, the ADA is showing its age.  Advocates argue that while the ADA banned disability-based discrimination, people with disabilities still have to fight to be included. Long-standing policies make it difficult for many people to find meaningful employment, obtain sufficient housing, relocate, and, in some cases, get married.  Rapid advances in technology can be hugely benificial for disabled people. But the lack of best practices and understanding of what accessible means for different disabilities often places the burden of access on individuals.  It's time for a change. This is why we reached out to Matthew Shapiro and Lilith Holmes. Matthew is a public speaker, consultant, and founder of 6 Wheels Consulting. Lilith is a high school student and fierce advocate who plans on going to medical school.  Listen and learn about the challenges they see in their lives and their advocacy work and how we can make meaningful improvements.  The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.          TRANSCRIPT: 01:00:07:19 - 01:00:39:16 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, The creator and host of The Odyssey podcast explores the turn our lives take When a loved one has a disability. Even though an estimated one in four Americans has a disability, so many obstacles that interfere with simply existing remain. I learned this immediately after my first child was born with Down's Syndrome in 2010. 01:00:39:18 - 01:01:07:17 Erin Croyle Instead of celebrating this beautiful baby, everyone around us, from doctors to friends to family, was saying sorry. Instead of joy, I felt devastation. I dug out of that pit of despair by first educating myself and later advocating for the human rights that we all deserve. That journey brought me here, working for the Center for Family Involvement at VCU's, Partnership for People with Disabilities. 01:01:07:19 - 01:01:22:09 Erin Croyle This podcast explores the triumphs and the hardships, will revel in how amazing the odyssey of parenting, caregiving and disability is. But we won't shy away from the tough stuff either. 01:01:22:11 - 01:01:53:14 Erin Croyle The Americans with Disabilities Act is indeed both marvelous and deeply flawed. When President George H.W. Bush signed it into law on July 26, 1990, it was groundbreaking. The ADA banned disability based discrimination granting access to jobs, school transportation and public spaces. 30 plus years later, the ADA is showing its age. In fact, some advocates point out that the legislation failed to shift mindsets. 01:01:53:16 - 01:02:19:03 Erin Croyle So while there are laws in place, institutions and individuals have to be reminded to abide by them. And sometimes that can be a fight that folks don't have the time, energy or resources to take on. This is why I had to talk to Matthew Shapiro and Lilith Holmes. Matthew is a consultant and public speaker. Lilith is a high school student who is the epitome of self-determination. 01:02:19:05 - 01:02:27:07 Erin Croyle Both of them were born after the ADA came to be. 01:02:27:09 - 01:02:46:04 Erin Croyle Matthew and Lilith, I'd like to start with you telling us a little bit about yourselves. Given what we're talking about, I think it would help the listeners if you could also explain a bit about your disability for context. At the same time, reminding folks that somebody's disability is nobody's business. Matthew, let's start with you. 01:02:46:06 - 01:03:10:19 Matthew Sure. So I'm very excited to be here for a wonderful conversation on such an important topic. For me, I am in my early thirties and have known the ADA all my life. I was born in 1991, so I have grown up with the ADA. I am a person who is in a wheelchair due to being diagnosed with cerebral palsy. 01:03:10:21 - 01:03:35:07 Matthew Basically that means that the messages don't get from my brain to the rest of my body effectively. And that requires me to use a wheelchair to navigate this world that we all get to inhabit on a day to day basis. And yeah, I think your intro really hit it on the head, right? I think there is a lot of improvement that needs to be done around the area. 01:03:35:07 - 01:04:01:24 Matthew And I, I've often said that we one needed to have another disability rights movement, but to really needed to be intentional about updating it because we are currently in a world where the issues and challenges that were faced in 1990 are still issues and challenges today and 2023. We are not focusing on the next generation of challenges that are affecting the disability community. 01:04:01:24 - 01:04:20:05 Matthew You know, digital access, work from home, shortages in care, attendance like those were issues back then, but they're even more so issues now because we haven't addressed transportation, we haven't addressed employment that were issues when the bill first passed. So there's a lot of ground that I think we still need to cover. 01:04:20:07 - 01:04:54:07 Erin Croyle Absolutely. Before Lilith, we go to you, I want to just point out, Judy Heumann, amazing woman, amazing advocate who passed away recently when she was advocating for the ADA. She was citing Section 504, part of the 1973 Rehabilitation Act. And so her advocacy was actually updating legislation and guidelines that already existed. And so it's interesting to be having this conversation now and you mentioning having another movement because it makes total sense were overdue. 01:04:54:09 - 01:05:01:03 Erin Croyle But we can dive into that more later. Lilith, can you go ahead and tell us a little bit about yourself? 01:05:01:05 - 01:05:19:23 Lilith Hi, I'm Lilith Homes. I was born in 2008 and I have albinism, which causes a loss of pigment in my entire body. That affects my vision because I have nystagmus and I have no pigment in my retinas black light. So I have to use a white cane for accessibility. 01:05:20:00 - 01:05:20:05 Erin Croyle And. 01:05:20:05 - 01:05:43:22 Lilith I read Braille. My school is a public school, but I go to a magnet school for profoundly gifted students. And while that has definitely been an amazing experience, the shortcomings of the ADA are highlighted by some of my teachers' actions. I'm not going to go too deeply into that, but I definitely feel as the world develops, the ADA should develop with it. 01:05:43:24 - 01:06:07:12 Erin Croyle A moment ago I mentioned that disabilities are no one's business, but in order to get those accommodate and we do have to disclose our disabilities. So this is of course, a complicated question. Some disabilities are obvious, others are invisible. But a lot of times we apply for things without ever meeting somebody. You know, you you need to know what to disclose and what not to. 01:06:07:14 - 01:06:13:24 Erin Croyle And it's like walking a tightrope. Matthew, we'll start again with you. How do you manage that? 01:06:14:01 - 01:06:33:20 Matthew I get asked this question a lot, right? And it's always been a situation where I pretty much immediately disclose that I am a person with a disability for a number of reasons. Right. One. Like, let's say I'm doing a job interview, right? That job interview needs to be in a location that is wheelchair accessible. I'm a power wheelchair user. 01:06:33:22 - 01:07:05:20 Matthew I have to be able to access where the interview is taking place. And so it's always in my view that if I'm not telling someone that that is a need, then then I could be walking into a situation where, you know, like the interview is on the second floor and they don't have an elevator. I've also always found that if you disclose, you're sort of getting out in front of it and you're, for lack of a better way of saying it right, you're not making things awkward when you are all doing things. 01:07:05:22 - 01:07:44:20 Matthew I understand how people with invisible disabilities may not feel the need to disclose, but I always tell people as soon as I roll into a room, you see my wheelchair and you know that clearly I have something going on. You might not know what the specifics of it are and you might not know how it affects me, but I think it's really important to help put people at ease in having that conversation right away, you know, where they're not having to guess, they're not having to assume what my accommodations are. 01:07:44:22 - 01:08:07:19 Matthew And you are developing a rapport with either your direct report, if you're working at a job or someone else that is in a position of power to help navigate. All right, Matthew, we've had this conversation. What can we do to help? You know, you have made us aware that, like, these are what your struggles are in the workplace or in any environment. 01:08:07:24 - 01:08:24:09 Matthew What can we do to make that more easy for you? And I think without disclosing that, you know, that conversation can be more tricky. So I've always been very open minded and very direct in my disclosure of my disability. 01:08:24:11 - 01:08:50:16 Erin Croyle Matthew, I want to follow up with that, though, because you have a consulting company and the work you do is very much disability related. And so in your circle of friends, in the people that you consult with, do you see something different though? Do you see people denied interviews if they disclose? Because there are stories of that and reports of that happening? 01:08:50:18 - 01:09:14:05 Matthew Yes, I haven't seen that directly. But you're right that there are stories of that happening. A lot of what I get is how do we handle it Right? And it's a situation of, I would argue, being prepared to handle it both ways. Right. Be prepared for someone to disclose, but don't expect that they would write again. If you're using me as the example, I would disclose. 01:09:14:05 - 01:09:36:21 Matthew I don't know how Lewis feels. I don't know how the next person with disabilities feel, but I think as a as an employer, be prepared for both and be good at handling both so that if someone discloses, you know, how to deal with that and if they don't, you have the system in place to help guarantee that they are successful in that role as well. 01:09:37:01 - 01:09:58:00 Matthew Because I think the opposite of that is true as well. Like if they don't disclose and then they're struggling because they didn't disclose it, you know, does that is that a detriment to them and their ability to be able to do their jobs? Probably there's not a right or wrong answer to that question. And right like it varies person to person. 01:09:58:00 - 01:10:10:15 Matthew And that's that's an argument I would make for disability wide on any number of topics. It really does come down to communication and what the person's personal beliefs are. 01:10:10:17 - 01:10:30:23 Erin Croyle Well, as your situation is different, I mean, you're in high school, but I'm sure you face a whole sort of different dynamic. You're also looking ahead to the future. I mean, you're I assume college applications and all sorts of things. I would love to hear how different your experience is. 01:10:31:00 - 01:11:00:16 Lilith Well, my parents haven't yet kicked me out of the house and said, get a job. So I haven't yet had the job interview, but I have had to do interviews. When I applied for specialty centers and I had to tell them that I had a disability not because they needed to do anything special for me just for the interview, but because if I were to go to that school, they would need to have a system in place to help manage my accommodations. 01:11:00:18 - 01:11:24:16 Lilith But it seems just like everywhere in public, people want you to disclose your disability. They ask you more questions than a doctor would most of the time. So I think it is up to the individual. But disclosure of your disability is important to those who need to know. But if the random strangers walks up in public and goes, what's wrong with you? 01:11:24:17 - 01:11:35:00 Lilith Because they see me with my cane, Matthew with his wheelchair and they would just march up and go, What's wrong with you? Do you need help? I think that's not appropriate. 01:11:35:02 - 01:11:45:01 Erin Croyle Yeah. And that level of discrimination just exists in this weird vacuum where people are completely clueless. 01:11:45:03 - 01:12:07:21 Matthew Can I. Can I piggyback on that? To work with what Little said. I agree with what she said. Right. In terms of when people randomly come up to you and say, hey, what's wrong with you? What's your disability? I can make an argument for the opposite of that too, though, because I've always viewed that. And again, there's no right or wrong answer in this situation. 01:12:07:23 - 01:12:31:19 Matthew I've always viewed that as an opportunity to educate and to expose people to disability, particularly younger youngsters. And I've frame that. I've always framed that as like my grocery store story, right? Where a little kid will see me in the grocery store and you get to look all the time, right? They'll see me with my wheelchair and their eyes will get as big as saucers, right? 01:12:31:19 - 01:12:56:09 Matthew Because they're so surprised by this device that I'm using to navigate the world. Oftentimes, if I'm in a space where I notice that they're doing that and I'm in a space where they can be safe with it, I will let them engage with my wheelchair, right? I'll let them drive my chair a little bit. I'll let them push the buttons on the chair that are the lights and the horn and stuff. 01:12:56:11 - 01:13:22:11 Matthew But nine times out of ten, the parents will come up and snatch the child away before that interaction can really take hold. And I think that does a couple of things, right? It it reestablishes like stranger danger, which I understand. I'm not I'm not advocating for people to speak to strangers, but I'm open. I'm open, I'm honest, I'm very approachable. 01:13:22:13 - 01:13:41:11 Matthew And then it also reignites the stigma around disability. I'm like, Oh, that kid. The next time they see some disability, they're gonna be like, Well, I went and tried to talk to Matthew, right? And when I did, my parents got mad at me. So I'm not going to try and engage with that next person that I see. And I don't think that's the right strategy either. 01:13:41:11 - 01:13:54:13 Matthew Right? Because we need to be teaching inclusion. We need to be teaching that all people are valued. If we're doing that, we're setting up young people for misinformation, I guess is the right way to describe it. 01:13:54:15 - 01:14:22:23 Erin Croyle That is such an important point and it's nice to hear that you still have the patience and tolerance for that. I think it is easier with children and I think too, it's different with intellectual disabilities and disabilities where communication is difficult, it scares people. I find it really strange with my son having Down's syndrome, you know, when he was little it was cute and people looked at him with adoring eyes. 01:14:22:23 - 01:14:36:08 Erin Croyle But he's, you know, almost 13. And as he gets older, it's it's a lot of stares, which actually to me because it's quite a common disability and people stare and they're not kind stares. 01:14:36:10 - 01:14:57:09 Matthew Yeah and honestly that will get worse before it gets better right? I ran into that same situation when I got like when I was younger, I was the cute kid in the wheelchair and everyone wanted to push me around and and all those things. But then when I got into like middle school and older, like, I wasn't frankly, I wasn't necessarily invited to parties. 01:14:57:09 - 01:15:27:09 Matthew And so I had to create my own social circles and my house became the hangout spot. But now as an adult or I try to act like an adult on a regular basis, I still feel like I'm a kid at heart as an adult, right? Like, I have the tools and the skills and the, you know, my parents let my friends drive my van on a regular basis, so I go out with them whenever I want and I have ramps to get into people's houses so I can, you know, go hang out at different places. 01:15:27:11 - 01:15:31:16 Matthew But it changes. I think people need to be aware of that. 01:15:31:18 - 01:15:59:01 Erin Croyle I love that you said this because I want to talk about, like what perceptions of disability and accessibility are because it's one of those factors of an inclusive community that people don't really understand. I think unless you are part of the disability community, when you hear accessible, you think maybe wheelchair accessible and maybe Braille, but it's so much more than that. 01:15:59:03 - 01:16:16:05 Erin Croyle It's screen readers, it's using camel case. When you do hashtags for those that don't know, it's capitalizing the first letter of a word. So a screen reader will read it as a separate word and the hashtags are not legible. The screen reader without that. 01:16:16:07 - 01:16:19:08 Matthew See, I didn't know that. See, like I just learned something. 01:16:19:10 - 01:16:45:11 Erin Croyle Right? And well, so there are best practices and standards that we are not practicing best practices as a society. I often think, how can we change that, you know, as we wait? I don't I don't feel like there's a movement to update the ADA. What would you want to tell the world about accessibility and what it means to different people? 01:16:45:11 - 01:16:51:01 Erin Croyle And Lilith, since Matthew and I have been dominating, I would really love to hear from you first. 01:16:51:03 - 01:17:19:21 Lilith Oh, of course, I. I feel like a lot of people think accessibility detracts from something like putting your Facebook post in legible font importing image description somewhere in. It makes your posts meaningless. But I want people to understand that accessibility doesn't just benefit the person who needs it. It can also sometimes benefit people who don't necessarily need it, like some people I've heard of. 01:17:19:21 - 01:17:42:12 Lilith They use closed captions when watching TV, even though they are not deaf. It just helps them focus more. And I'm not saying that people without disability should go gung ho and taking up all the resources, like just standing in the wheelchair ramp like some people at my school do. But I just want people to understand that accessibility is important for everyone. 01:17:42:18 - 01:17:52:12 Lilith It is not just something we have to do to make the disabled person be quiet because that's just not very nice. And yet a lot of people say that. 01:17:52:14 - 01:17:54:04 Matthew Well said. 01:17:54:06 - 01:18:06:14 Erin Croyle Exactly what else do you experience at school, Ellis? I mean, what sort of things are you asking for that come across as as like a burden, if you will? 01:18:06:16 - 01:18:26:05 Lilith I wouldn't like to throw my school under the bus too much, but a lot of some of my teachers have been treating my IEP as optional or complaining about it or acting like it takes away from the whole class. If they write in a legible font and make their mouth bigger than an end on the screen. I mean, when they're presenting it. 01:18:26:07 - 01:18:40:10 Erin Croyle You know, it's funny, as is aware, as I like to consider myself, I didn't even think of font size. That is such a simple thing to adjust. And you find folks not wanting to do that. 01:18:40:12 - 01:18:46:06 Lilith Yes, many folks think that it's just too much effort. 01:18:46:08 - 01:19:11:11 Erin Croyle It's interesting, when I was researching ahead of this interview, you know, just thinking outside the box about accessibility, modifying door handles for someone whose arms, you know, maybe you don't have hands. I know in my own personal experience with a child who eloped, having access to fenced in playgrounds that had gates that were childproof was a lifesaver. And it's hard to come by those. 01:19:11:13 - 01:19:37:08 Erin Croyle I find that I run into roadblocks because people find fencing to be almost related to jail, but that's keeping kids alive. How can we find a middle ground on what is aesthetically pleasing and what is a safety issue? It's actually hurtful to see how little people want to change. Matthew. I mean, being someone using a wheelchair, you must see it all. 01:19:37:10 - 01:20:09:19 Matthew It is quite an adventure to navigate the world from a seated and six wheeled situation. People think that the bare minimum of accessibility, meaning ADA, compliance and different things like that is all that we need to be doing when in truth and in reality. In my work, I always challenge people to say, Let's go above and beyond what's required by the ACA to make the space as most accessible and inclusive as possible. 01:20:09:21 - 01:20:40:16 Matthew What does that look like? Well, that could be open floor planning, right? Where there's not. You're not in a space that is cluttered by desks or extra staff around the place, like extra boxes and extra cabinets and extra, you know, whatevers that take up additional space for from an accessibility standpoint, whether you're a wheelchair user, whether you're like Luis and how it cane, whether you're somebody who uses a walker, all of those things matter. 01:20:40:18 - 01:21:03:18 Matthew And one thing that often blows people's minds and I was talking about this on a panel I was on recently, carpeting is super important. If we have a carpet that has like a design in it, if you're navigating that space as a wheelchair user, that design is going to pull you in a certain direction because of how the thread on the carpet is. 01:21:03:20 - 01:21:27:04 Matthew And so when I'm working with my architect clients and my builder clients, I'm saying like get rug that doesn't have design in it because it's going to make it easier thinking about layouts of of office spaces, right? Thinking about instead of having, you know, if you have a bunch of desks, make them all standing desks so that that is immediately accessible to everyone, right? 01:21:27:04 - 01:21:45:04 Matthew I can go up to my desk and I can push a button and that raises my desk up. You know, I'm coming to you from my office right now. And over Christmas, my my parents bought me a standing desk for accessibility purposes so that I could in programing I could raise my desk up in trying to navigate under my desk. 01:21:45:04 - 01:22:01:24 Matthew I can raise my desk up. I now love this desk, and it makes me so much more productive. You know, we've got to think about sidewalks and spaces to get to and from spaces, you know, are that are the stones coming up through the sidewalk? Are they compliant? Are there curb cuts compliant? You know, all of those things. 01:22:02:01 - 01:22:23:04 Matthew So my brain is constantly evaluating and looking for the right path and looking for the right way to go about things. I would love a day when, you know, I could go somewhere and not have to worry about that. I think we're a long way from that, but that is definitely a goal that I would like to see achieved. 01:22:23:06 - 01:22:51:13 Erin Croyle As someone who's 45, I remember in 1990 the buzz around ADA, but I was quite young then. Still to not fully understand how amazing it was. And you know, people with disabilities were segregated quite a bit still. So I didn't know anyone who could share with me the impact of it. But I remember very well the conversations around businesses not wanting to comply and being angry and complaining about costs. 01:22:51:15 - 01:23:19:17 Erin Croyle And to some extent I get that because small businesses can't afford to change everything. But at the same time, here we are, 33 years later and I see new constructions, I see remodeling and a complete failure to try to use universal design for living. I don't understand why we can't do ramps. I don't understand why any public bathroom does not have an adult changing table. 01:23:19:17 - 01:23:27:09 Erin Croyle You know, I don't understand why showers cannot be fully accessible. It it is heartbreaking. 01:23:27:11 - 01:23:51:02 Matthew There's an element to where I think the most exhausting thing for me and I'd be curious to know your thoughts with your son and know if I would like to know this from YouTube. But the amount of planning that is required to make sure that like, okay, we're going to go to this restaurant or there's very little that can be done spontaneously as a person with a disability because we want to go to this restaurant. 01:23:51:02 - 01:24:13:23 Matthew Well, Darren, there's a step to get in there. Well, how do we do that? Do they have a ramp? Oh, we'll carry you in. No, you won't. Right. Like there's all these things that occur or, you know, we want to go stay at this resort. Well, you only have one room with a rolling shower and somebody is using it and they don't have beds that are for limited beds for somebody like myself who uses a royal lift. 01:24:13:23 - 01:24:29:01 Matthew And for those that don't know what a horror lift is, it's a piece of equipment that can be rolled under the bed that will help you transfer from your wheelchair to the bed. And in order to do that, you have to be able to roll it underneath the bed. But nine times out of ten now we have platform beds. 01:24:29:03 - 01:24:51:21 Matthew Those are just a couple examples. There is a laundry list of things that you have to concern yourself with before you even try to do something on a day to day basis. So yes, it's part of life. But again, I would love a scenario where that would not be required. But as of right now, because of the way the world is set up, it is still required. 01:24:51:21 - 01:25:00:02 Matthew And that's what motivates me to try to change the way we have these conversations in the work that I do. 01:25:00:04 - 01:25:04:12 Erin Croyle Before I say anything little, if I'm curious what you have to say. 01:25:04:14 - 01:25:28:23 Lilith Sorry. Yeah, I agree with that. I feel like it's difficult not being able to just get up and go somewhere and enjoy it without wondering, okay, who is going to fall and break their nose on the steps and on the bathroom signs actually properly labeled because I think I mentioned this on a panel. The bathroom sign at Barnes and Noble and Braille. 01:25:28:23 - 01:25:52:12 Lilith It was upside down. And so pointing that if you put your finger on it, you'd stop yourself. So, yes, I feel like it's difficult with the lack of universal design to be able to do anything without a lot of careful planning and agonizing over Is it worth the risk? Should we complain to them? Stuff like that. 01:25:52:14 - 01:26:12:00 Erin Croyle But I want to ask you to to tell us a little more, because I think, you know, we know a lot of things that happen with wheelchairs, but I don't think there's a great understanding of folks who are visually impaired because I think there's a perception that you have a cane or a guide and that's it. You're fine. 01:26:12:02 - 01:26:16:18 Erin Croyle So can you tell us a little more about some of the daily obstacles you face? 01:26:16:20 - 01:26:46:21 Lilith It's hard when the crosswalk is not very visible crossing the road, but when I go outside, I cannot see anything at all because I have no pigment in my eyes to block the sun. So I just can't see anything at home. So it's very hard crossing the road when you have this guy in the car waving and waving and waving and waving and waiting for you to go because you think he thinks you can see his hand or when the sidewalk is bent up and cracked, because that's hard for me to navigate with my cane. 01:26:46:23 - 01:26:54:14 Lilith I think it's hard for most people to those with disabilities and without to manage that anyway. But it's very hard to see. 01:26:54:16 - 01:27:15:20 Erin Croyle It's interesting to me too. I find a lot of the hurdles are our fellow humans; people leaving bikes in the curb-cut outs or things on sidewalks, or just standing there and not being aware of those around them, just in their own little bubble of reality. And it's not a universal reality. 01:27:15:22 - 01:27:37:06 Matthew Well, and I think that's so interesting, right? I have a couple of thoughts on what Lewis said. First of all, the fact that Barnes and Noble has the Braille sign upside down, like that's a problem. Like somebody didn't install that properly. So like, what are we doing to fix that? I can't tell you how many times I'm on the sidewalk, right. 01:27:37:08 - 01:27:55:22 Matthew And somebody is walking towards me and they're doing the universal. I'm on a sidewalk from my head down and I'm going to be looking at my phone situation. I stay on my path. I do not move because it is not my job to move for you. You need to look up and you need to realize, Oh, I'm about to run into somebody in a wheelchair. 01:27:55:24 - 01:28:16:23 Matthew And a lot of times when that happens, to your point, hearing like people not being aware of what's going on around them, they'll hit me and look at me like it was my fault. When you got your head down in your phone and you're not paying attention to where you're walking. That happens to me more than I would like to admit. 01:28:16:23 - 01:28:23:20 Matthew It is a frequent occurrence when I'm in big cities like New York, DC, places like that. 01:28:23:22 - 01:28:50:11 Erin Croyle Yeah, you see that everywhere. It's a lack of empathy and a lack of knowledge. And quite frankly, ignorance. I think as a society we still look at disability as this thing that will never happen to me. But one in four Americans. That means pretty much either you or someone you love will have a disability that impacts your daily life before you die. 01:28:50:13 - 01:29:14:11 Erin Croyle And I talk about this when I speak to university students about inclusion. I feel like my dad is a really good example and I'm a good example of that. I didn't know anyone really with a disability until my son was born. He was the first person I met with Down syndrome. Because of that. I think part of the devastation I felt when he was born was just not knowing anyone because we just pretend it doesn't happen. 01:29:14:13 - 01:29:40:15 Erin Croyle And then my father had a stroke and he had to use a wheelchair and it was devastating for him. And my mother, who's a nurse, but old school used the word invalid, you know, to describe him, which to me is one of the most hurtful, awful words you can use to describe a human being to to say invalid, which is essentially invalid. 01:29:40:17 - 01:30:03:13 Lilith What I mean about a lot of people, they they don't know they're doing it well, or maybe they do, but they say a rude word like retarded, invalid, stuff like that. And I'm not sure how many of them know that they're saying something. They really should not say someone with a disability. But that's just it's very hurtful even when they don't mean it. 01:30:03:15 - 01:30:13:18 Matthew So and it's interesting that you say that. Well, is right when I run into a lot of times, as I'm glad you're out today. Right. I'm glad you're here. 01:30:13:20 - 01:30:15:05 Erin Croyle Oh, my God. 01:30:15:07 - 01:30:18:22 Matthew Oh, I get it. I get it regularly and my such. 01:30:18:22 - 01:30:20:22 Lilith Oh, I'm sorry. I didn't mean to interrupt you. 01:30:20:23 - 01:30:23:13 Matthew No, no, go ahead. Well, the such an inspiration. 01:30:23:13 - 01:30:26:09 Lilith You're so brave. You got up this morning and came to work. 01:30:26:13 - 01:30:45:13 Matthew Yep. Yeah, It's that or it's. I'm glad you're out today, right? And my friends have gotten to the point where they'll make jokes with me, like, Oh, I'm glad you're out to do that, but they'll, like, Come pick me up. Right, and do all the things like the language we use is so important. I am not to love your point. 01:30:45:13 - 01:31:13:03 Matthew I'm not an inspiration because I wake up every day and I put my pants on my messages might be inspirational. My way of doing my work might be inspirational, but just because I live my life doesn't make me a godlike figure because I'm quote unquote, overcoming my disability. I'm not overcoming my disability. Right. I'm living with it. I am living to love it. 01:31:13:03 - 01:31:44:08 Matthew I am living to navigate life with it. I have the same wants, desires and needs as everyone. At 32, I'm actively in the dating scene and let me tell you, it's an adventure and it's it's hard to deal with all of that as a person who uses a wheelchair, frankly, because society doesn't look at you in a romantic sense, which is hard. 01:31:44:10 - 01:32:14:09 Matthew So I'm dealing with the same things people my own age are navigating as nondisabled folks. But there are elements that make it harder because you're having to break through societal misunderstandings more than anyone else. Sorry, I went on a soapbox for a second, but it's it's very, very hard and is very, very frustrating that you have to jump over five hurdles before you get what you want. 01:32:14:11 - 01:32:32:14 Erin Croyle I have to ask you a question which is totally off topic, and then we'll jump back. And maybe this is a topic for another episode, but someone recently asked me, you know, they have dating apps for almost every niche anywhere. I mean, do they have specific dating dating apps? 01:32:32:16 - 01:33:03:04 Matthew They do. However, and this is not a not a lot of those people are older. A lot of those people are into weird fetish things. And so for I'm a younger person, I am 32, right? I'm not trying to date again, like not a knock. I'm not trying to date someone 52. And so, yes, there are, but the pool is not as vast, if that makes any sense. 01:33:03:06 - 01:33:17:16 Erin Croyle It makes total sense. And I don't see any reason why you wouldn't want to date someone without a disability. It doesn't make sense to have a separate app, but yeah, but that's to me, that's cutting down on the dating pool for you. 01:33:17:18 - 01:33:21:18 Matthew I honestly would go ahead with this and then I'll. I'll add again. 01:33:21:24 - 01:33:58:00 Lilith I'm sorry, it's very hard because I am not look any way looking for a life right now but when I get to that phase, if I am going into an area where people are more likely to fall in love with each other, I would not like if someone were to walk up with me, I would. To me, I would prefer them to say, If you want to go on a date rather than, Oh, you're so inspirational because it's ability, as sad as it is, that people don't see people with disabilities in a romantic way, they see them as inspirations or less nice things. 01:33:58:02 - 01:34:22:21 Matthew As somebody that is navigating that now, you're right. And Erin, I'm I'm on traditional dating apps like I'm on the bumble's of the world. I was on eHarmony for a while. I was on match for a while. And there are hurdles not to be completely got off topic of the conversation, but there are hurdles that are really, really hard to get through. 01:34:22:23 - 01:34:51:20 Matthew And here's the other thing. And I've said this to my therapist. I've said this to my parents. I've said this to a lot of people. I feel like my like I'm doing things now in the dating world that you would typically probably do in your early twenties. And so I have felt stunted by all of that because people when I was growing up again, I was like the best friend. 01:34:51:20 - 01:35:14:07 Matthew And you know, for a lot of people it's still the case because I am a genuinely gay. People don't often view me in a romantic sense. But what people don't know, it's like I'm going to treat you how you're supposed to be treated, right? And I'm going to be the best partner out there. But then the other element to that is there's more that comes with the relationship with me than than a traditional relationship. 01:35:14:07 - 01:35:31:05 Matthew So I don't want to get us too far down the rabbit hole. But yeah, it's a fun it's a fun thing to explore. And by fun, I mean, that's fun, but not fun. I mean, argh! But we're, we're doing what we can. 01:35:31:07 - 01:36:14:16 Erin Croyle Well, I love a good Segway, and actually, I think is the perfect Segway because you mention hurdles and I'm thinking about how we view disability in this society and how it impacts people in lack of understanding impacts everything from dating to universal design to how we build structures. A lot of times when I have to work with my son and help my son get access to the things he wants to do, his level of accessibility is more about changing mindsets because when you have an intellectual disability, everything's hard from communication to acceptance to just doing things. 01:36:14:16 - 01:36:41:16 Erin Croyle And we've had situations where, for example, I wanted my son to be on the local swim team. He loves swimming. He is not going to swim like the other kids. And I had to jump through hoops even in this city that considers itself inclusive, but not really jumping through hoops with people who consider themselves inclusive and who are amazing people. 01:36:41:18 - 01:36:54:13 Erin Croyle It was hard and it was a lot of work on my part and he's on the team and it's great. But the process of getting them there was not it was not accessible. 01:36:54:15 - 01:37:02:08 Matthew How is it now that he's on the team like what's that like? But granted, there were challenges getting him on the team. But what's it like now that he's on the team? 01:37:02:10 - 01:37:21:23 Erin Croyle Well, the irony, Matthew, is it's a noncompetitive swim team. So the fact that it was hard to get him on the team is ridiculous. We found a great person to help him. That was part of allowing him on the team, was having a support person in the pool with him and he's doing okay. He's a good swimmer. Maybe he doesn't get the exact stroke he should be doing at that time. 01:37:21:23 - 01:37:29:23 Erin Croyle Right. But he's an athlete. It's just he doesn't, the competition part isn't something he cares about, but I think that will come. 01:37:30:00 - 01:37:33:04 Matthew Yeah, well, and it sounds like he just likes being in the water. 01:37:33:06 - 01:38:06:23 Erin Croyle Water? Yeah. Waters is his happy place. Yeah. So when I think about that story and I share that story, I share it because everywhere I see roadblocks, it's due to ignorance from the schools to our buildings to our mindsets. And I say this again when I talk about inclusive schooling, I do not understand how we are not teaching about disability more in schools, both in our public schools, where we go every day, but also higher education. 01:38:07:04 - 01:38:34:23 Erin Croyle Because when we're talking about accessibility in school, when we're talking about universal design, maybe if our architects and engineers understood things like ramps and how showers should be designed and platforms that are needed for beds, maybe then that could be best standard practices. And the other thing that I find is because our mindset mindsets have not shifted. People don't think they'll ever become disabled. 01:38:34:23 - 01:38:54:13 Erin Croyle And so they're putting in steps and multiple floors and spiral staircases. And there's just this lack of understanding about how we could create things that are accessible and beautiful and everyone can enjoy them. And it means that you can enjoy it for a lifetime no matter what happens to you. 01:38:54:15 - 01:38:56:17 Matthew Well, do you want to go first? 01:38:56:19 - 01:38:58:04 Lilith I'm sorry, I didn't hear. 01:38:58:07 - 01:39:39:09 Erin Croyle There's not really a question there I love. I'm curious, in your experience, if I could turn this into a question, if you think things would change, if we would introduce disability history, but also the needs for accessibility and modifications both in our public schools, grade schools, secondary, but especially in higher education. So for example, if every teacher, even if you're not planning to be a special ed teacher, but every teacher took special ed classes to understand idea, to understand how powerful and important teaching is, to understand different disabilities, and how adapting a classroom can help all students. 01:39:39:12 - 01:39:50:18 Erin Croyle If architects could do these things, what impact do you think that could have? Lilith And what would you want to see change to help impact that universal change? 01:39:50:20 - 01:40:22:19 Lilith I think that educating people on disability access would be very important because there are several ramps that I've seen so far that make Mt. Everest look accessible. Educating people because it isn't just wheelchair ramps, it's everything educating people about disability and how to make things accessible, which is very important. People should understand these things because most people have never even heard or had never even met someone with a disability. 01:40:23:00 - 01:40:43:06 Lilith And they are very confident, I'm never going to be disabled, I'm fine. And then they wake up one morning and they're disabled and then they're just they don't know what to do with themselves. So I feel like teaching people about disabilities and accessibility wouldn't just benefit people in the disability community, it would benefit everyone. 01:40:43:08 - 01:41:04:00 Erin Croyle And Lilith, how do you think if we had already started that, if this had been something that had been a part of the ADA that we would introduce learning about disability in our education systems to change mindsets, how different do you think your life could be if that had been something that had happened? 01:41:04:02 - 01:41:19:15 Lilith I think it would be different. I think that it would be easier for me because people would understand my needs and other people's needs. It wouldn't be a big deal. It would just be a natural part of life. 01:41:19:17 - 01:41:30:08 Erin Croyle What kind of things have you had to teach people just so you could access school or extracurriculars? How much educating do you do in your circles? 01:41:30:10 - 01:41:42:16 Lilith I have to educate a lot of my teachers on exactly how to accommodate me, and I probably shouldn't have to do this. But why they should accommodate me. 01:41:42:18 - 01:42:16:10 Matthew And Erin, I have I have so many thoughts on the last five or ten minute conversation we've been having about should we be teaching accessibility, Should we should it be part of our education system, all that stuff? The short answer is yes, I have never understood why in any conversation, disability is not in the same mold as people of color. 01:42:16:12 - 01:42:54:13 Matthew People on the LGBTQ spectrum. Why it is not more forefront in our education. And yes, I think everyone, every teacher to be should be learning about idea, should be learning about the ADA. You should be having this knowledge base because to not understand disability as a teacher is frankly I think, unacceptable. Right? Because at any point you could be teaching somebody with a disability and you don't know it. 01:42:54:15 - 01:43:14:20 Matthew What I have loved is that it would have been a primary thing that came out of the 88. Yes, But also what we're talking about right here is the crux of my work. I am trying to do that education. I am trying to make architects more aware of accessibility, so much so that I'm on to architect projects right now. 01:43:14:22 - 01:43:37:11 Matthew I'm trying to have conversations with builders to say, hey, build more universally design things that, yes, it could be used as an ADR apartment, but it could also be used as a traditional apartment. Build it in the structure of what you already have. Yeah, I think there's a lot of work and a lot of conversation that could be had about Lilith and I. 01:43:37:11 - 01:43:58:16 Matthew To be part of those conversations. Bring us in. Like, I would love to know more of Louis perspective as somebody who's blind and visually impaired, I can only imagine now, like I know what navigating the world is like for me. And I have all my senses. I can imagine being blind and visually impaired. Now granted, you would figure it out just like anything else. 01:43:58:16 - 01:44:09:01 Matthew But we all have different ways of going things. But I think the more people knew about those things, the better off we would be. 01:44:09:03 - 01:44:37:11 Erin Croyle You know, we're talking about education and a lot of what folks do talk about right now is DTI, diversity, equity and inclusion. But in my experience, unless an organization is disability focused, DTI is for everyone but disabled people. We're still outliers. The White House issued an executive order in 2021, changing it to diversity equity, inclusion and accessibility. But that really hasn't gone mainstream. 01:44:37:11 - 01:44:50:13 Erin Croyle It's only federal guidelines and I never hear anyone talking about it. So I'm curious for both of you what your experience has been with DTI practices. 01:44:50:15 - 01:45:18:11 Matthew DTI is another one of my hot topics and things that I work on regularly. I do a ton of programing about DTI and bringing people with disabilities into the workplace. And one of the things I always say about the is we need to make sure disability is part of that conversation. Oftentimes I am in the back of the space and disability is not brought up and I'm like, How much more diverse of a population do you want? 01:45:18:17 - 01:45:40:23 Matthew Our population crosses all other populations. You can be a person of color. You can be a person of color who is also gay. You can be a person of color who is also gay, who is also atheist, right? I'm just making stuff up. It all came across. DEI is so important and disability needs to be a regular part of that conversation. 01:45:41:03 - 01:46:00:21 Matthew I do that on a lot of panels. I do that with a lot of groups I work with. You know, how are we developing the strategies and when we're developing the strategies, if we have a DEA statement, does that include disability in the language? If we're coming up with a guide plan, like what are we doing for disability programing to make sure that's part of it? 01:46:00:23 - 01:46:05:09 Matthew I have a lot of thoughts on the idea, but I'm curious to see what Luis has to say. 01:46:05:11 - 01:46:30:15 Lilith I feel like it's hard to talk about inclusion without talking about disability, and yet everyone acts like disability is a bad word. I feel like the fact that the White House added accessibility to that is good, but people still aren't taking it seriously yet. Disability should have been a part of it from the beginning because disability is not like this really rare thing. 01:46:30:17 - 01:46:42:16 Lilith It is very common and it's important that people with disabilities are treated the same way as everyone else or in the correct way that they need. 01:46:42:18 - 01:47:08:05 Erin Croyle One of my favorite things to talk about when we talk about the ADA is the pandemic. And let me say, I don't really like talking about the pandemic. It was traumatic. It still is. It's still hurting people. But I guess one of the few things positive that came out of it is that we were able to see accommodations for people with disabilities that they've been asking for for years, happened virtually overnight. 01:47:08:07 - 01:47:39:21 Erin Croyle Virtual meetings, telehealth, virtual IEP meetings, the ability to participate in local government remotely. It was just amazing. And at the time the realist in me was like, Oh, this is fleeting. But there was hope that maybe it wouldn't be. But we're seeing now telehealth with the end of the public health emergency is going to slowly be phased out and we're going back to this ill informed idea of normal. 01:47:39:23 - 01:47:53:07 Erin Croyle And so I'm curious for you to what changes would you like to see be made permanent and what other changes in general would you like to see that you think that we can do after seeing what we were able to do so quickly? 01:47:53:09 - 01:48:13:24 Lilith I felt like telehealth was a really good step because prior to the pandemic, any time that US three needed to go to the doctor, we had to drive sometimes an hour to the office, then sit in the waiting room, and then basically be sat on by our parents and stop us from looking them off the chair in the sick section. 01:48:14:01 - 01:48:33:21 Lilith After telehealth, we could just get in front of our computer and be a few minutes later we would be talking to our doctor and then we would not have to worry about who was going to climb on top of the table. So I really think telehealth should be made permanent because while some appointments do require you to be face to face for testing, a lot of appointments don't. 01:48:33:21 - 01:49:05:18 Lilith So it's very good that you can do a doctor's appointment in the comfort your own home without getting every germ from the hospital and bringing it with you. I also feel like masking was a good thing because while it's really difficult to wear a mask for 8 hours straight at school, the amount of sickness, COVID and just any other illness in general that decreased our family, you didn't really get sick at all in 2020 when prior to masking one person a week was bringing home some really nasty germs. 01:49:05:23 - 01:49:10:18 Lilith So I think more people should embrace masking and telehealth should be made permanent. 01:49:10:20 - 01:49:12:12 Erin Croyle Matthew, what about you? 01:49:12:14 - 01:49:37:00 Matthew I will say that the time during the pandemic was the most productive I think I've ever been, because I would attend 3 to 4 meetings on a regular basis and I wouldn't have to travel. I could get so much more done because I was not having to go from point A to point B to point C to attend meetings or to do something in person. 01:49:37:02 - 01:50:06:16 Matthew We can't go backwards. We can't go back to what we were before the pandemic because it has made life so much more easy for people with disabilities, so much so that in the coming weeks I'm attending the National AIDS Symposium virtually to re-up my credits for being a coordinator. I could have gone in-person, yes, but it is actually so much more productive, so much more accessible to be able to do it from my home office, all my computer. 01:50:06:18 - 01:50:39:22 Matthew I can do the session and then go to my kitchen and grab a glass of water or eat some lunch or work on else while I'm waiting in between sessions. I think that every event, everything that we're doing in business, in school, there should always be a virtual component. I know that people dislike getting on Zoom meetings, but there are times when I can't get to a physical space, be it because I don't have a ride it because I'm not feeling well and it's just easier for me to jump on the zoom. 01:50:39:24 - 01:51:01:06 Matthew That has to remain and I will be very disappointed if we go back to the norm. And frankly, I don't think we are. I think in some spaces we are, but I think people have seen the value in people working from home. There happier right there, there being better productive work done, more quality work done. Yeah, I hope it's not. 01:51:01:08 - 01:51:08:11 Matthew You must come in from 9 to 5 and you must do X, Y, z because that's not a productive way of thinking about things. 01:51:08:13 - 01:51:28:06 Erin Croyle You know, it's funny when you discuss productivity about working from home. I find working from home, if no one's home, there are less distractions than an office. No one's dropping by to chat. No one's interrupting. No one saying, Let's go to lunch. You can get a lot more done in a short amount of time because there's no chatter. 01:51:28:08 - 01:51:51:06 Erin Croyle No, I feel like I need to add as a parent and caregiver when we're talking about some of the adaptive tions with the pandemic that have changed for the positive, for me to have a child who has a lot of needs at school. I have IEP meetings every month with his team. He sees, I think, eight different specialists. 01:51:51:06 - 01:52:14:19 Erin Croyle Some of them are 6 hours away. So to be able to have telehealth and virtual IEP meetings was a complete game changer. I got hours back from my day because no one wants to stay in chat on a Zoom call. They're like Sia and they hang up. And so even if a school is 10 minutes away, you cut out that that extra. 01:52:14:19 - 01:52:39:10 Erin Croyle And then you think about families who don't have transportation, who it's hard to make it to IEP meetings. This gives them a chance to actually participate. This opens up participation for people who have not been able to, because of their socioeconomic status, their employment status, their transportation status. It is a game changer and we need to keep looking at how we can evolve those practices, I think. 01:52:39:12 - 01:52:40:14 Matthew No, I agree. 01:52:40:16 - 01:52:52:20 Erin Croyle I have to ask you, Matthew, we're talking about the ADA and you just mentioned being an 88 coordinator. So can you tell us more about that? And it sounds like you got the inside scoop there. So why haven't you made changes? 01:52:52:22 - 01:53:12:21 Matthew Well, I wish I had that. I wish I had that power and authority because I would. There is a certification you can get that says you are an 88 coordinator. So I took a bunch of courses and learned as much as I could about the ADA. Am I an expert? No. But I have my notes everywhere from from the courses that I took. 01:53:12:21 - 01:53:38:09 Matthew So I have resources available to go back and look. And I really did that for my work. When I'm doing assessments or any of my other work, I'm thinking about things above and beyond the ACA compliance, right? What can we do to make this space more fully inclusive and accessible? So, you know, I have that mindset going in, but now I also have the knowledge of what the ADA requires so I can look at it from both perspectives and I can give the best product to my clients. 01:53:38:09 - 01:53:55:21 Matthew That is possible because I have that common sense approach. And then I also have what the ADA says. It was really a knowledge learning thing for me. I've had it for about two or three years now. I need to kind of go back and again, that's why I'm taking the courses next week, kind of re up my credits. 01:53:55:21 - 01:54:01:15 Matthew Yeah, it just gives me a wider breadth of knowledge that I can provide to my clients. 01:54:01:17 - 01:54:08:09 Erin Croyle So give us something then. Lois and I are here. What's something about the ADA? Do you think, that maybe we don't know. 01:54:08:11 - 01:54:36:00 Matthew Everything turned out not to be. I know if I have, like, a specific thing. Let me. Let me. Let me give you an example of what I would like to see. Mm hmm. So two things. One, airplanes aren't necessarily covered by the ADA, so the airline industry has their own legislation for that which they're working on that I know I've seen stuff lately on LinkedIn and stuff where they're trying to figure out ways to get wheelchairs on planes so people don't have to leave their chairs. 01:54:36:05 - 01:55:01:06 Matthew But one of the things I would love to see within the ADA, rather than strict doors, have to be 32 inches or, you know, light switches have to be X, Y inches, make it ranges to say that if a light switch is between here and here, you're compliant because like, let's say I wanted a light switch at a lower register because I'm a seated person and I like light switches at a lower spot. 01:55:01:06 - 01:55:22:04 Matthew So I don't have to strain to turn them on and off. Or let's say I wanted wider doorways in my house to allow for me to freely navigate as a wheelchair user. So if we developed ranges rather than mandating like it has to be 32 inches, I think that that would help with universal design, that would help with more inclusive accessibility. 01:55:22:09 - 01:55:30:00 Matthew That's something I brought up to a lot of different folks. There's not been any kind of movement on it, but that's definitely something I would be open to seeing for sure. 01:55:30:02 - 01:55:35:05 Erin Croyle Is there something in the ADA that's interesting for non wheelchair users? 01:55:35:07 - 01:55:59:20 Lilith The fact that Braille is required to be on all bathrooms is great, but either there is no regulation about how the quality of the Braille should be or people just don't listen to it. Because like I said, the upside down sign, the fact Braille is pointing to the fact there is typos all in it. I do not know if that is covered by the ADA, but if it isn't, it definitely should be. 01:55:59:20 - 01:56:13:18 Lilith And if it is, people should pay better attention to it. And again, that shouldn't be strictly the Braille is to look exactly like this and me exactly with texture. But they should at least make it so that Braille is legible. 01:56:13:24 - 01:56:16:24 Erin Croyle So the good quality control component there. 01:56:17:01 - 01:56:24:10 Lilith So that if you put your finger on the door, it does not slice your finger right through when you try and read if you're going to the right restroom. 01:56:24:12 - 01:56:25:18 Matthew Right. 01:56:25:20 - 01:56:53:19 Erin Croyle Lilith, I like to describe you when I tell people about you because I really admire you. I describe you as a firecracker and it's, ah, my my grandma used to say, and I find it to be a great term. I say this because earlier you mentioned reluctance to bring it up, and I'm curious what that reluctance is given what a strong advocate you are. 01:56:53:21 - 01:57:14:21 Lilith Mostly, I'm just pretty sure no one's ever brought it to their attention and it's left the reluctance to bring it up. Then me wondering if they're actually going to do anything about it, if they're going to go, yeah, okay. And then turn around and say how annoying I am without ever fixing the Braille. It's more of I want to make sure that if I say something, it will mean something to someone, not just me. 01:57:14:23 - 01:57:38:11 Lilith Spelling hot air from my mouth to no avail. And I would like to advocate for important things like I am doing right now rather than talking to the wall. I'm not saying you shouldn't advocate. I'm saying that I would. Most of the time I would, but I don't like that It never goes anywhere. 01:57:38:13 - 01:57:56:14 Erin Croyle Yeah, it's exhausting, isn't it? Yes. You know, the ADA was written before the Internet even existed and before smartphones were here. So if you had a chance to modernize the ADA, what would you do? What would you add? What would you change? 01:57:56:16 - 01:58:28:24 Matthew Make sure all websites are mandated that they become and be made accessible. There's a lot of websites that are still not accessible. I would think about AI and how that could potentially benefit people with disabilities. I would think about the use all smart devices like I just recently in my bathroom, put in smart light bulbs and I can now say, Hey, Google turn on my bathroom lights and it'll do it. 01:58:29:01 - 01:58:51:18 Matthew It's important that we get with the times and what the modern world is. And I don't know if the ADA does that. So those are things I would like to see. And unfortunately to Erin, I need to get ready to run. I have to get to the gym and try to get my summer beach body going. 01:58:51:20 - 01:58:53:22 Erin Croyle Matthew, can I ask you one last question? 01:58:53:24 - 01:58:54:21 Matthew Sure. 01:58:54:23 - 01:59:02:17 Erin Croyle We've talked a lot about what you would change. I want to know how we can change. 01:59:02:19 - 01:59:23:10 Matthew By working together. Let's say Wilson. I worked on a project together, right? She's coming at it from being a person who's visually impaired. I'm coming at it from being Mobility Challenge. Why can't the whole community, why can't the whole 36 million Americans in this country work together to challenge lawmakers to say, I'm tired of you threatening to cut Social Security? 01:59:23:10 - 01:59:48:01 Matthew I'm tired of you not passing legislation that actually would benefit people with disabilities. Right. There was a huge chunk of the Build back better act that the president put forward that was going to help people with in-home care and other elements of things that impact people with disabilities. But that got taken out. Why did that get taken out? 01:59:48:06 - 02:00:11:13 Matthew And we need legislation that is working with the new generation of the ADA in the new world that we live in. And because the ADA is so old, can we really see that and can that really be the case? So yeah, I think it's a matter of all of us working together to make the world as best as it can be. 02:00:11:15 - 02:00:14:08 Erin Croyle I love it. Go get that beach body. 02:00:14:10 - 02:00:21:14 Matthew I will. I will work on that. But it was very nice to see you guys. And thank you for having me on the podcast. And if I can do anything else, let me know. 02:00:21:16 - 02:00:31:06 Erin Croyle Oh, we're going to talk dating soon. I got to. I got to think that one over for. So what ideas do you have to modernize the ADA? 02:00:31:08 - 02:00:54:14 Lilith I agree with what Matthew said. I think that more technology should be incorporated into it because accessibility on computers is very different. Like, I am not endorsing any specific company here, but I turned on my Mac for the first time and said, Set up your accessibility. I turned on my Windows computer. It was the tiniest font ever. The mouse was invisible. 02:00:54:16 - 02:01:25:16 Lilith I had to install like 16 drivers to get my accessibility onto it. So again, I am not dissing Windows. They are great, but I think they really should incorporate a regulation for how computers should be accessible without people having to turn their pockets out just to be able to work from their computer. That said, also they I, I think that that should also be improved to optimize accessibility for anyone who would need it, like close captions are often very inaccurate. 02:01:25:17 - 02:01:39:22 Lilith Most days I cannot get Siri to turn on voice over even if I wanted her to. She's like, What? What? What? So technology should be a bigger part of the ADA as it becomes a bigger part of our lives. 02:01:40:02 - 02:02:00:17 Erin Croyle And I imagine because technology's hard if you're not really savvy anyway. And so if you add that component in with disability and then you also think about how useful it would be to just be able to go to the Mac store, but then how much work it is to plan trips to get out to wherever because of your disability. 02:02:00:17 - 02:02:06:23 Erin Croyle I mean, it must just add so many extra unnecessary layers to your life. 02:02:07:00 - 02:02:07:22 Lilith It definitely. 02:02:07:22 - 02:02:29:13 Erin Croyle Does. What do you think could help peel the onion, if you will, of those layers, making technology accessible? What else do you think our society could do to just take some of those steps away that you have to take to make sure things are accessible for you? 02:02:29:15 - 02:02:59:01 Lilith It's different for me since my disability is different from Matthew's. I do not require a wheelchair, but it is still very difficult for us to plan an outing because we cannot see. No one can control the sun, but we have to make sure it's very dark outside. It's just a lot of planning for us. And if there are more universal design, it may be easier, like better sidewalks, better regulations for people on the road, stuff like that. 02:02:59:01 - 02:03:06:22 Lilith That will make it much easier for us to travel more freely without it being like four days of planning for a one hour outing. 02:03:06:24 - 02:03:15:18 Erin Croyle We talked a lot about vision impairment, but I mean, your albinism must also affect your daily living greatly. 02:03:15:21 - 02:03:21:17 Lilith About a bottle of sunscreen. Every time we step foot out the front door for playtime for that. 02:03:21:17 - 02:03:31:20 Erin Croyle Is there anything you think as a community we could do better or do you just have to adapt to the places that are indoors? 02:03:31:22 - 02:03:44:20 Lilith We adapt to that, yes, but a possibility will be a shade. Your area is for people who don't like bright light or who cannot cope with bright light like me and my siblings. 02:03:44:22 - 02:04:09:16 Erin Croyle It's interesting you say that because something I wanted to touch on before we go is when we talk about accessibility. Sometimes it does mean taking away like crowds can be very overwhelming and light and sound can be very overwhelm. And a lot of the thin

Reaching full potential. Becoming independent. We want these things for our children. For kids with disabilities, providing the assistance they need while trying to achieve these goals is like walking a tightrope. Help from even the most well-intentioned people, often is not helpful. It’s not just educators, parents unintentionally hold their children back as well.  Dr. John McNaught has made it his life’s work to reshape how we teach students with disabilities. Early on, he realized parents need to be educated too. The lesson plan: SELF-DETERMINATION.  He has witnessed first hand the transformation that happens when you give children the tools to make decisions for themselves. He has watched students move from self-contained classrooms, to general education classrooms, and onto college campuses.  Take a listen and learn how powerful self-determination and meaningful inclusion can be when done right.   The Odyssey: Parenting. Caregiving. Disability.    The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.  You can learn more about I’m Determined here.  You can read the research article Dr. McNaught’s mentioned about struggles students face because they don’t understand their disability here.      TRANSCRIPT Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down's Syndrome in 2010. His diagnosis hit me like a freight train. It's the most common chromosomal condition diagnosed in the United States. Yet so little is known. I was a new parent with a newborn son who was the first person I ever met with Down syndrome. I had so much to learn. So I started right there next to him in the neonatal ICU. Now I'm here working with the Center for Family Involvement at VCU's Partnership for People with Disabilities. This podcast digs deep into the joys and hardships we face. We're going to celebrate how amazing the odyssey of parenting, caregiving and disability is. But we won't shy away from the tough stuff either. Something a lot of families struggle with are the many roadblocks our children face throughout their lives. These roadblocks are in our communities, our workforce, our schools, even in ourselves. Thankfully, more and more bridges to independence are being built for our children. One of those bridges is a program called I'm Determined. This state directed project funded by the Virginia Department of Education. Works with youth, especially those with disabilities, to help them steer the course of their lives rather than being the passenger. It's all about self-determination. The program isn't just for youth, though. There's a family component that helps parents learn how to better listen to and support their children. And there are resources for educators as well. Joining me today is Dr. John McNaught. he was one of the first people in Virginia to implement student directed IEP meetings. His focus has always been bringing the student voice to the forefront. He's also the founding member and principal investigator of the I'm Determined Project. so. John, I'm so excited to talk to you. I've known about I'm determined for years, but last year was the first time I was able to attend the summit working with its communications team. I have to be honest, while I've known about I'm determined for ages, it's hard to fully grasp what it's about without being there. I would love to start with you as a founding member. Summarizing, I'm determined in a nutshell, So in a nutshell, I'm determined is all about opportunities to practice self-determined behaviors in an environment that supports those behaviors. And so it's that simple. I think a lot of times we where we fail with self determination is we do a little bit of an instruction and we toss a kid into an potentially unsupportive or scary environment. And what if we approached life that way? What if the first time you drive a car, you know there's no instruction or there you read the manual and then you just get in the car and drive by yourself with nobody there. And so it's all about scaffolding supports providing that environment, right? You become competent in your ability to do things like advocate or problem solve, and you do it around people who are, you know, supportive. And that gives you the ability and the confidence then to go try that somewhere else like school. So that's how you know, in a nutshell, that's how I would describe it. There's a lot of probably 10,000 intertwining pieces that make that happen. But that's the best case. John, before we dive in deeper, there's something that kind of always intrigues me reading your full bio, right? I wonder what brought you to this place professionally. And I ask this because until I had my son, I was totally ignorant, to the struggles and marginalization that people with disabilities face. And by the time my son was one, I was then immersed in advocacy. my son, he's just opened up my life in this spectacular, fair way. So I now see all the room for growth in our educational systems, our workforce, our community that I wasn't aware of. So I'm really, really curious if there was an event or a person or something that put you on this path. Yeah. So there are multiple things. So I'll start with, know, I grew up in a small town. It was a kindergarten through eighth grade school and everybody knew everybody and it was an inclusive model. our football coach, his son, was an individual with Down's syndrome. He's the same age as us. Chris was his name was in all of our classes he was the manager of the football team. And, you know, he was just one of one of the guys. Right. and then we graduated eighth grade and we went to regional high school. And my mom was actually a teacher at that high school. And I can remember, like after about two weeks, you know, I probably wasn't even in two weeks realizing, Hey, where the heck is Chris? I haven't seen him, you know, in two weeks. And I remember asking my mom and I'm like, Hey, where's Chris? And she's like, What are you talking about? I'm like, I haven't seen Chris, you know, since school started. And she's like, Oh, well, you know, he's in the special ed program. And I'm like, All right, well, where is that? And, you know, I mean, you know the story, right down the hall, down the stairs, around the corner, next to the boiler. And that just kind of stuck with me as just not being right, not feeling right. He was such a part of our everyday life. And then it's like you don't even see the kid. that's how it was for four years, you know? I mean, we you know, we tried to, you know, break him out, but inclusive education was certainly not a thing. And social inclusion was definitely not a thing. And so that that kind of stuck with me. And then honestly, I did some volunteer work in college at a place called the Virginia Home for Boys you know, it was just a lot of kids would with different stories, but some of it was behavior related. Almost all of it was disability intersectionality of disability and and some other issues. 01:06:31:12 - 01:06:40:21 Unknown And, you know, just kind of watching them at such a young age like, you know, teenagers just in this home, residential, no choice, no voice. And it just kind of brought me back to this idea of Chris and then I graduated college and I didn't know what I wanted to do. And so I decided to hike the Appalachian Trail from Maine down to Georgia. And in the middle of that hike in Virginia, I ran into this group of kids from this wilderness school, and they fed me an and remarkably, one of the kids from the Virginia home for boys that I had volunteered with was a student in this wilderness school who recognized me. And so we started having this conversation and it turned out this was a school for, you know, kids with ADHD, emotional disability, learning disability. And they were there because they also had some behavioral issues. So they were either there because they had a problem in school, their parents sent them or the court sent them. And I was like, this is this is interesting. And we just kind of hung out all night. And so I got off, finished the trail and I was telling my dad how I didn't want to my major, what my undergrad major was business. And I was like, There's no way I'm going to work in business. And he happened to see an ad for a wilderness school. I go on the interview and it's that school and those kids are still there. so I started a week later. did that for three years, living out in the woods and eventually decided that, you know what I want to learn more about special education, went back, got a master's degree, and then went into teaching. And my first kind of foray into teaching was I was given a room. So I was working was I got hired as a teacher of students with emotional disabilities, and they gave me my first classroom and it was like, you know, I don't know, an eight by eight closet with no windows. And an A caseload of 25, but I had seven who were seniors who were 100% self-contained I was just like, wait a second, we're supposed to hang out in this room for 6 hours together by ourselves. So I was like, This is crazy. I don't think we're going to do this. I will never forget this. I thought this was such a great idea. I on the first day of school, I handed them all their IEPs and they said, What's this? I was like, Get your IEP. And they're like, What's an IEP? Whoa. Now I can start getting a little bit nervous. And then, you know, back in the day it was called emotional disturbance. So they see their name, they see the word emotional disturbance, and they're starting to get, you know, what the heck's emotional disturbance? Well, then they start reading the present level. And in hindsight, I probably should have read those a little more closely through a different lens. So they were super negative, right? It was basically summary of every bad thing that kid ever did and every, you know, And so they're starting to get upset. And I'm like, Who wrote this? And I said, This is my first day teaching. I mean, look at the back page, see who signed it. Like, I didn't write it. So, you know, we sat we started having a conversation and these kids didn't know they were in special ed and they had been in special ed since third grade. They're now 18 or 17. It's fall semester of senior year. And so I talked to the principal. I'm like, Yeah, we're not going to do this self-contained thing. We're going to these kids, This is crazy. And, you know, we moved to an inclusive model with the idea that if there's behavior problems that I'm going to have to deal with it and we're going to, go back to the old model. If we have to. And, you know, I just watched trying to give these kids some choice, and they were just so unwilling to take the leap because they'd been told what to do forever. And now they're 17 and some new young kids in their talent on that. They're in charge and they're like, I don't think so, man. Like, I don't you know, I don't trust you. I don't know you. I don't even know what to do and how to be in charge. it was a hard year. We made a lot of strides. But you cannot in one year make up for six years of, you know, self-contained education or lack of education. And so I was a little, you know, like, all right, we got to change this whole model. And then that that same year at the time we had what was called IEP Day. And so it's April and I had like 27 on my caseload, including and those kids were all graduating. So they didn't they didn't need I didn't need to rewrite their IEP, but 27 kids every IEP do on the same day. And you know, for anyone my age or older, you'll remember pre computers, we had the NCR paper. So each sheet of the IEP was like seven pages thick and you had to write really hard. That's right. Right. So, you know, I wrote 27 IEPs, I'll do the same day. And so then the kids would come to school until noon and then leave because it was a half day. And then we were supposed to schedule 27 IEP meetings from 1 p.m. to 9 p.m. like in every special. The teacher in the school is doing this. And so I was like, This is crazy, but okay, this is what we do. So we're going to do it. And I told the kids, I said, Look, if you come to your IEP meetings, I know I knew from asking them they hadn't done it before. You come to your IEP, meet me, I'll buy you pizza the next day. And they're like, Yeah, yeah, yeah, we'll see you there. So I thought they were going to show up. And so the day comes, they leave the meeting start. I've got administrators just walking in and out of classrooms, just signing their name and leaving. I've got, you know, parents who, you know, some want to sit down and have a meeting, but some just want to sign it and walk out the door. And out of 27 possible kids, I had zero show up. this is like a bad origin story. I was so annoyed at those kids for not showing up. Right? And so I go to school the next day. I'm like, I can't believe you didn't show up. What is the deal? I was going to buy you pizza. And they're like, they're like, Look, dude, school ended at 12? So let me just get this straight. You want me to come back to school? That which I hate? You want me to sit in a meeting with a bunch of people? I don't like so I can hear about all the things I can't do? They're like, No, thanks. And I'm like, WhatIf you had looked at the IEP, I wrote, but they had no say in it, right? They didn't. You hadn't even seen it. And so in hindsight, not a big shock. They didn't show up. So I said to them, out of out of frustration, you know what? Anyone who's not a senior, you're going to write your own IEP next year. I'm just not going to do it. And I just happened to go to a conference a month later and met one guy out of Northern Virginia, and he had this grainy VHS tape of this kid participating in his meeting. And I was like, Oh, this is a thing like, we're doing it like this is a thing. And so the next year I started what I called back then, student led IEPs. we went for it and we did it it was awesome. It was a lot of work, but it was a lot of relationship building and it totally changed. It changed the kids, it changed the parents, it changed the administrator perspective of the kids. It changed the general education perception of the students. it was really just this magic thing that they just kind of took off. And my wife was also a special education teacher at the time in the same district at a neighboring high school. And she started doing it and it started taking off. this is all kind of pre undetermined. Right. I'm a term wasn't a thing yet. so that's a long way of around how I got to coming up with this thing called undetermined John I just have to say what really strikes me in my heart as a mother of a kid with Down syndrome and as a person who helps other families, you know, do this, it is just like, wow, that was one student. This all started because of inclusion with one student back in elementary school. And I just think, so often, parents still have to fight to have their kids included. You know, they you have a certain code and automatically you are put in a self-contained classroom, you're segregated. And that argument that we still have to make constantly as advocates, which is, inclusion is better for everyone. students with disabilities do as well, if not better, and students without do as well, if not better. And your story is like this beautiful example of what a difference it can make. Just seeing someone with a disability in the same room as you. I mean, that changed your entire trajectory. It did. I'm floored. I just to me, it speaks volumes to inclusion and then to hear the stories, about the IEPs, that does not shock me. I mean, we're still at a place where a lot of schools,  you have to fight to have a student lead their IEPs. I mean, you know, I've been doing this now for 25 years you know, I'm finally I'm finally the old guy in the room who's like, we've been talking about this for 25 years. People like, come on, You know, I mean, I can remember thinking, oh, I'm never going to be able to say that, yet here I am. Like, we're still talking about getting kids involved in their IEP meeting, what's happening now we're trying to fight against, right, is that students participating in their IEP. It's it's awesome. It's a feel good moment, but it is not going to move the needle for the kid. Okay. It's a it's a once a year thing. What moves the needle for the kid is opportunities to practice being self-determined at home, in school and in the community on a daily basis. Right. And so that's where, you know, and you can still do still what? IEPs because it's fun and it's cool. Just can't be the only thing you do. And so it's all about those opportunities to practice. You know, I look at it now, you know, my lens now, 25 years later is, you know, I'm a researcher, I'm a teacher, but I'm also a parent of two high school girls, one of which has a disability, has ADHD, anxiety and OCD. And so I come at this through those three lenses. Right. And if you're only working on this stuff at school, it's not going to cut it, right? You've got to have families and teachers speaking in common language, working together, providing those opportunities. And I watched it with my own kid because, look, my my daughter is at the high school that my wife and I taught at. Okay. I know almost every teacher. I know all of the administrators. All right. She has a wonderful plan. I have all the privilege in the world. I mean, I am a white male with a terminal degree, and I have all the connections at the school. Right. You know how my kid gets accommodations? She advocates because when she wasn't advocating, it wasn't happening. And if it's not happening for me, right, then it's not happening for anybody, I can promise you. Right. Because if there's anybody's kid that should be getting it, they would be like, Oh, look, watch out for this guy, right? Make sure his kids are getting what they need, not the case. And so I'm like, all right, you know what? Then you're going to go do it. And luckily, you know, we've been raising her as a self-determining, self-determined child for so long. She was like, okay. and what a change. Like, what a change. Like, I haven't had to have one conversation in a year and a half with anybody because she's taking care of it. And that was my like, light bulb moment. Like, Wow, you got to put it in the hands of the kids. You do. And that's this is perfect is I want to talk about that more. I want to talk about I'm determined. And I think also the beauty of I'm determined, right, is one, it's an ongoing project. It's not just the summit, but also, you know, you work with kids who have disabilities, but those disabilities vary greatly. And I think a lot of times we talk about student LED IEP, but what about those students who don't have, traditional expressive language abilities, who have a very hard time communicating in a way that, non-disabled people understand? You know, my son is a perfect example. I have had him attend his IEP meetings since preschool I'm still working to have that participation be meaningful because that communication piece is just not there yet. So I would love to hear more about I'm determined and how you help kids of all levels and ages and all of it.   so.  Communication is like that's the heart of everything, right? And it's so hard being a parent. And I'm a parent with a degree in special ed and I still feel like I don't know, I don't know everything, but to I had to get out of this mindset of like, automatically looking at the teacher as the expert. Well, I'm not going to question right. Even myself and also understand you as a teacher. They don't necessarily get exposed to all of the resources that are out there, especially around communication. Right. Technology's changing every minute. And so a lot of the work we do is exposing teachers, kids and families to assistive technology because there is so much out there. Right. And not everything has to cost $10,000. Right? There are all sorts of apps or functional communication devices, speech generating devices. And what is so one of the things we did that I really love is is through I'm determined and a t tac in the College of Education at James Madison University is we opened up what we call the Accessibility and Inclusion lab where we've invested, you know, a quarter of $1,000,000 in technology and accessibility and we open it to free service teachers, in-service teachers, parents and kids. Let's say you have a kid who's strong, who's who's got some communication needs and you can't necessarily figure it out. You come to the lab and you can try everything, right? Because if the kid isn't motivated to use a device, it's not going to be a good fit. I've had kids weighing iPads across the room because they don't want the iPad. Right. And so it's a heck of a lot easier to come to us and throw our iPad across the room than it is for a parent to drop two grand on an iPad and then it's broken or a school division, whatever. every kid is different. Every need is different. And again, it's that opportunity to practice, right? So exposure and understanding that, not everyone's got the budget or the ability to bring all these pieces together for somebody to try. And, you know, that's one of the goals of the lab. So like, come in, explore it. And we've seen you know, we worked with a student, Chloe, who's an amateur one youth leader. She's actually about to graduate from VCU as a journalism major. She has cerebral palsy. She absolutely hates to use a speech generating device. Now, I work with Chloe all the time. I've known Chloe for almost a decade. I don't have an issue understanding her. But if you just met her, you're potentially going to have an issue. for Chloe, it was like it was all about speed, right? If I asked you if someone asked the question. Right. The fast processors can always answer first. If she's got to always type it into a device. Right. Especially if it's a kind of a antiquated device. They're already on six questions down. She's still trying to get her device geared for question one. There are question six, And so, hey, understanding that we got to find the right piece for her, but her also understanding that there's going to be times where, although it's not her preferred mode of communication, she's going to have to use something to get her point across. And that for her, that was a process that she really had to kind of come to. And then having her the ability to try all this new technology and be like, Oh, so I can have something preprogramed and boom, click and I'm right in it. it's sad sometimes. You see kids are still walking around with like, like a picture exchange communication system book, right? The thing weighs like 600 pounds. You know, you got to flip 80 pages to get to hamburger. I mean, I don't know how functional that is, right? I mean, are you going to be walking around with that thing in the community? I just think this idea of embracing technology and understanding that everyone has a desire to communicate, right. And if they can't do it verbally, they'll do it through behavior. we've got to find out where they are. I've had students lead IEP meetings with every disability you can imagine. one of my first years, I had a kindergartner with Down's syndrome, run his own meeting, show his PowerPoint. You know, I ran into the kid like two months ago. It's got a full time job at Costco. And I was like, Oh my gosh, oh, my gosh. She's I'm like, oh, he's got like a full beard. You know? I'm like, I remember you from kindergarten. it's accessibility in the ability to understand that these resources are available. We got know how to source them. And that's hard That's hard for families. That is I mean, you say JMU for those listening, that's in Harrisonburg, which is kind of central Virginia, beautiful town. And you mentioned TTAC. So I want to stop for clarity that one, if you can explain TTAC. But also the question is, do you know of other places that do a lab like this where where can people find something like this locally? So Virginia has a model where as far as technical assistance to schools for special education, we have offices at seven different state universities and we cover the entire state. We're free resource the schools. And so for Virginia, you know, that's great, right? There are some other universities in Virginia, George Mason, Virginia Tech, that all have access to these kind of resources. But the reality is, no matter where you are in the country, universities is where you need to look. if you're in New York, I'm looking at, you know, maybe Cornell, if that's the area of the state you're in, what is their special ed? You know, who's our special ed department head? What do they have to offer? Because, you know, in my experience, you're going to have a better chance finding it at a university than you are at a local school system. Right? I mean, local school systems are just not equipped for funding wise to create this kind of they can do it for individual kids potentially, but they're not going to have a room where you can try all these different devices out. as a teacher prior to coming to the university, that was not on my radar. Mike. I had no idea that that's where I should look. And so that's where I would start as a parent. That's good to know. So I want to move towards we've kind of gone everywhere, so let's go backward so we can go forward. So you start the student letter IEP process and then how does that kind of evolve into I'm determined, there was an opportunity for a job at James Madison at TTAC. I decided to interview for and I got it. about a year later I was 25. And then in 2006, we were tasked the Department of Ed, through the Tea Tax, were tasked with coming up with a solution to or post-school outcomes for individuals with disabilities. we did a bunch of research and some things we found out were that at the time in Virginia, kids were not attending IEP meetings. Kids did not know what their disability was. They couldn't tell you any of their strengths. They couldn't tell you any of their accommodations. They couldn't tell you any of their rights under idea. you know, we had poor for post-school employment outcomes, for post-school secondary education outcomes. based on that and in our research, we said, well, self-determination sounds like an area we need to dig deeper into. And at the time, Mike Meyer out of Kansas was doing a lot of research that we would kind of grasp on to. And then the second piece was we knew it had to be in the very beginning teacher friendly, and so it had to be something we had to create something that teachers could use quickly that didn't feel like a curriculum because they weren't going to do it. And so we brought in some teachers from across Virginia, we came up with what we call the three core tools of I'm Determined. So you got the one pager, which honestly is just a simple way to come up with strengths, preference, interests, needs. We created the goal plan because another piece of that data was that kids had they didn't have short term goals. They didn't have long term goals. There was no real goal setting going on. So the goal plan and then the Good Day plan, which was just simply like, what's going on now? You know, or what happens on it? What on your perfect day, what happens? Is it happening now? What needs to happen to fix it and who can help you? And those were three easy tools and everyone loved them  and they jumped on board. And then I got to focus on, okay, as a result of these three tools, let's keep this student let IEP train. And I started moving, right? And so we brought in some professional film crew and just started making movies of kids leading IEP meetings, kids talking about their disability, understanding what their strengths were general education, teacher, special education, teachers, administrators, parents. Right. And honestly took I'm determined from from the nine pilot schools we started with in 2006 to, all the school divisions in Virginia, plus over 40 states that I've worked with over the past. You know, however many years has been the video storytelling. Right. Because people can see themselves in the stories. And that's powerful. And they want it. They want to see it, to believe it kind of thing. focused a lot in the beginning on driving around the schools in Virginia and shooting video, that was probably, you know, I don't know, maybe the first ten years of work. And then with that, this idea started in the year two. Okay, Well, that's the teachers now. We got to hit the kids directly. And so we came up with this idea of a summit. And so the very first summit, it was just a youth summit. And we had 15 kids with disabilities from across the state. And had kids with L.D., kids with autism, kids with Ida. And, you know, we had one kid who was the leader she ran this this two and one half day summit. And the whole time I couldn't get rid of the parents. So the parents are sitting outside our doors trying to, like, poke their head in, see their kids, okay. And they're driving me crazy. And and I wasn't a parent at the time. Okay? My wife was pregnant with our first kid, I couldn't really know why these parents are killing me and my colleagues. Like, we need to do an event at the same time for the parents, I was like, Man, I don't want to do that. That's going to be a pain in the butt. And she's like, It's going to be easier than this. And I'm like, All right, let's do it. And so the next year, five of those kids from the original summit came back as the leaders, we we said, All right, parents, we got something for you, too. And we went from like, you know, a summit of 15 to 20 to 50. and we found that and the parents had so many questions, right? So many questions around disability, around opportunity, around just navigating school and life and these these parents formed this like, support group outside of us back in the times everyone's using Facebook. The youth formed their own support group on Facebook and left us out of it. you know, we did another year of 50 and then next year we're at 100 and 150 you know what I found with parents? And this kind of speaks to why we really try to get a wide array of individuals with disabilities as if my kid has ADHD. I want to hear from another parent whose kid has ADHD. And if my kid has Down syndrome, I want to hear from another parent whose kid has Down syndrome. And at first I didn't totally understand it, but I kind of get it more now because it's just that like they can totally relate, And so we made sure that we had a wide range so that everyone had. if I'm if my kid is, 13 and just kind of going through it and I can run into a parent whose kid is now 19 or 20 and they can kind of tell me all the hoops they jump through and all the barriers they broke. For the parents, they can see the light and they learn some tricks for the kids, This is the crazy part. Every time a kid came to the summit and I wrote a whole article on this, they they'd say, I thought I was the only kid with L.D.. I thought I was the only kid with dyslexia in the world. I thought I was the only kid with intellectual disability in the world or autism. And then I come and I meet all of these other and this kid's got the same disability as me, and they're in college. Like, I can do that. That's a thing. And it just started right. The ceiling, just their own ceiling started raising. And so then we knew at that point, okay, we got the kids, we got the parents, we've got the special ed teachers. Now we got to raise the general led ceiling. you know, if I could do the whole thing over again, I would have never build this as a special ed initiatives. honestly, after about year five with my work with schools, I build it as an all kid initiative. And if you want to make inclusion happen, that's how you do it, right? All kids need these skills. All kids need to tell you what their strengths are, what their needs are, and by doing that right, I've got schools that every single kid's got a one pager, every single kid's got a good day plan, and it just changes. It's just more of an inclusive mindset. So I wish that I had that kind of foresight way back when we first started it, because the places where I started as a special ed initiative, it was really hard to kind of remarket it as something for all kids. And that's still kind of drives me crazy. Yeah, I can see that. Although I think, it may not belong to you because it's your baby and you've been doing it a while, but it is still young and there's so much room for growth. And I love that you've brought this up because I'm quite curious, you know, when you were talking earlier about special education in that first room you started in and that mantra that we learn as advocates, special education is a service, not a place is so important. And hearing what you're saying now, when I speak to university students and I talk about inclusion with them, and one of the things they mention is, is the failure of higher education to teach special education to all teachers, including general ed teachers, because these practices, these practices benefit every single student and co teaching models are beneficial, all students. And we just see in our structures that lack of funding of public schools, the lack of education in higher education to make this happen. John, if you could change something what do you think the the thing is that could have the most impact? Yeah, honestly, you hit the nail on the head and I'm I'm involved in a project and that's what we're doing right now in it is re-envisioning educator prep programs because we can't keep churning out teachers who are not prepared. And so like you said, especially with the teacher shortage right there, kids, students with disabilities are going to be in general education. And that's just a fact. End of story. A lot of our educator prep programs, right. You can you can say I want to be a high school math teacher. And outside of your intro to Ed class, never hear the word disability. Ever. And then you come out and you're teaching algebra one in 15 to 20% in the kids in the room have an IEP and you even know what it stands for. Now, what kind of that model makes no sense right, Right. And so we're working on both at, you know, with the Department of Education and a select number of universities in Virginia is just, hey, that model makes no sense. We need to do better than that. The other side of that coin is this. You're going to want you're going to college because you want to be a special ed teacher, okay? At some colleges, you can go through four years and never interact with a general education undergrad, and then then they get a job and it's like, Oh, cool, I want you to go co teach math. And they're like, Whoa, what? I that's not what I do. I'm not. I'm not that. And so we're failing and on both sides, And so we're teaching this model that is like honestly, like a pre 1975 model. Yeah. And we're still doing it. I came to that realization like maybe two years ago in this, this grant opportunity showed up a year ago. So I was all over it because I'm like, I'm tired of constantly going into in-service classrooms and trying to fix things that need that could be addressed in re service universities. And so to me, like that's what we need to do and that's what I'm excited about kind of moving forward. And I'm a little I'm a little worried about with the teacher shortage, with all these people going coming in my kind of alternate route who aren't necessarily having those classes like that scares me a little bit. But I'm putting my eggs in that basket. We need to we need to fix those educator prep programs. We need to get them aligned. They got to work together they got to understand, like all kids means all kids both and need to understand that. you know, I have hope for the future because I think we're getting there. I think we're we're looking at that model. And I know some universities already have like what I'm talking about, like, I know Radford University in Southwest Virginia has been doing a model like that for years. And guess what? Those teachers come out better prepared because I've seen them. So we can do it. Yeah. And Radford has a great reputation. It's unfortunate. I mean, we have the teacher shortage and then we also are seeing some colleges and universities are losing money and they're having to get rid of programs that were actually hugely beneficial. And I guess we can just I mean, hope is great. So let's hope that it starts to see the pendulum start swinging back. But I think advocacy is also necessary speaking about these things and spreading it. I know so many teachers who care deeply about teaching, but it's a struggle because they have to relearn so much. After going through school and getting a master's here, they are relearning through professional development. And you know that same question like from a parent lens. Yeah, I think what I've learned is that you've got to put 100% of your effort into creating the most self-determined son or daughter that you can because even though I know better, I wanted to solve my kids problems. I wanted to call those teachers out and be like, what are you doing right? And I did that sometimes like, I would. I did it sometimes. And it didn't have a it didn't have any effect. Right? And so watching my own kid learn to navigate the system and just be fearless about it because they they've been practicing it for so long that, you know, as a parent lens, that's what I'm going for. And I'm going to make, you know, my kid has more significant support needs. I'm going to make sure 100% they have some kind of communication device. So when I'm not there, they can communicate those needs and we're going to practice that all the time. that's just as a parent, that's where I am. And, you know, I'm going to feel like, okay, my kids prepared. Well, let's touch on that more, because I think and I bet you've run into this a lot and I bet the parent summit helps. But, as parents, you know, that parental instinct to protect your child is so ingrained in us. Yeah. And then when you combine that and having a child with an intellectual or developmental disability, that protection radar is just up a notch. And I think as parents, we can sometimes do a huge disservice to our children in just thinking that we're protecting them and thinking that we're helping them and thinking that they need these things. We kind of hold them back a little bit. So I'm curious, you know, how often you see that and also how you help parents kind of understand how detrimental it can be, though. I see it all the time and I've been guilty of it myself. But so I think with self determination right at home you start small. I'll give you this example. So my kids who are now about to be 16 and 17 when they are around five, one night a week, they pick, they pick a meal, they make the grocery list, we go shopping and they help cook the meal cook. And so, you know, here we are at 17 and 16. They're both extremely competent and confident in the kitchen. I've got one who's like a master dessert maker and one who can cook any kind of pasta and loves to grill cook. And so taking the time to give that opportunity to think about when they're in an argument, right, they're only a year apart. Like there were times as a parent where I'm like, You be quiet and sit over here. You be quiet and sit over here. But then 5 seconds later, they're in that same problem, right? So and not every moment, a teachable moment. Right. But your default all needs to be teachable moments. Okay? And that's how you're going to start building that up. Think of choices. Our kids can go through school, Think of elementary school. There's like zero choice built in, Right? I think my kids couldn't even pick where they ate lunch by until fifth grade. You imagine that? And so how can we build some choices and build in some autonomy, as they get older? And this is the hard part. Okay. They've got a decision to make. And I say, look, if you choose this path, these are the consequences, meaning this is what's going to happen potentially you choose this path. These are the consequences. Hard part is stepping that stepping back as the parent and letting them choose the path, especially when it's not the one you would choose. I've watched my kids make mistakes and, you know, cringe. And the key pieces, which we don't do well in school. Okay. Failure Is the middle, not the end. We chose the wrong path. We have some consequences. Let's reassess what went wrong. What should I maybe done, what didn't I think about? And then let's try something again. Think about how they go through school. They fail a test. The next day you're on to New material, right? In their mind, failures. In the end, you can't go through life that way, You've got to learn to look at failure as the middle. And so the more that we can kind of instill that in our kids, you know, my my teaching, my oldest attire, shoes, she's a lefty. You know, at one point I was like, you know what? We're just going to buy Velcro because I can I am not a fine motor skill visual. Like, I just can't do it. And so, you know, also knowing when we're just going to need Velcro and we'll figure this out later, giving yourself some grace, but really looking at how you your family system, how much choice is built in, how much opportunity to try things are built in, how much are you connecting, what they're interested in. You know, when my kids were in high school, they always had a chore list. But this is more recent. The rule was chores had to be done at 3 p.m. on Sunday. Right? And they were just blowing it off. They just weren't doing and it was annoying. And my wife was annoyed and I was annoyed and were nagging them nonstop and it was just unenjoyable and I was like, What do we do? I talk about this stuff all the time and I'm doing everything I said not to do, right? And so I was like, okay, new plan, Here's your chore list, Here's your chore list. This is the this is the plan. I don't care when you do them, but they need to be done by 3 p.m. on Sunday. If they're not, then you turn in your cell phone until they're done. Well, my youngest looks at me and she's like, Yeah, right. You always say this kind of stuff. You're not going to follow through. I don't really care. Mike Okay, let's see, right? First Sunday rolls around, my oldest Saturday, all the chores are done. She's not feeling any pressure. My youngest, Sunday, real five. Still not done. Mike, give me the phone. She's like, now to get the phone back. Do I have to do them or is this just like a time thing? I'm like, No, you got to do it. You get the phone back, right? So she learns. So now, you know, three years later, my oldest still does a on Saturday in my youngest, although she's never missed another deadline, is still sprinting through the house at 259 on Sunday. The difference is I'm not annoyed. My wife's not annoyed. And it's her conscious choice to do it that way. And little things like that. build up our kids. You know, I set this up thinking we're just going to talk. I'm determined. And here I think you might have problem solved. One of my biggest frustrations, I'm going to give this I mean, they don't have phones, but I can think of something. I'm going to give this a shot. So thank you. I think so often, looking at this as a parent, we put people like you, John, and  my colleague Dana Yarbrough, who I just think is the best thing since sliced bread. we put professionals on a pedestal because we see what you say. But to hear you talk about implementing it at home being difficult, it just makes it easier for us to not feel so bad about our failures because you can try so many different things and it depends on the kid, you know? Absolutely. I've done so many things wrong. Yeah, yeah. I mean, and yeah. And then you have a self determined kid who doesn't want to listen to you because they're self determined. And so it's like that. That's what I have now. I've got two teenagers are like, I got this, I got this like, hey, I just scheduled myself for junior and senior year, and oh, my youngest says, and I signed your name. So I'm like, Whoa, dude, there's a line between self-determined and forgery. Like, I need to at least see what you're planning. But they're just taking control. And so, I mean, it's cool, but there's definitely, like, as a parent, there's like, Oh, remember the good old days when I could just control you? Yeah, that's, you know, it's a whole it's a thing. Well, and I, you know, I have an eight year old who? My daughter, they were born self-determined  I just got to hold on to the seat tightly until they're mature enough to make decisions that are not harmful. But I think that's the beauty of I'm determined. Right? So you have this perennial project that is year round where you're constantly working with schools and then this summit and I have to tell you, after finally being able to go to the summit last year and watching these young people just grow so much in three days, it is inspiring. And frankly, it's just electric. So can you kind of walk us through the thought process? Because not every person is born like my daughter who comes out just ready to take on the world. So how do you work on like building confidence and teaching these young people self-determined Nation? what makes the summit special is that it's kids leading kids, kids to disabilities, leading kids to disabilities and the adults really take a back seat and we are there, but we're there if there's a problem, if there's a question, you know, if a student's got a, you know, significant support need and whatever, we can do that. And look, that can be it's two things. It's very scary for parents because I purposely put parents on the other side of campus and I set up, face time stations in case there's, an issue. But it's almost always the parent wanting to talk to the kid and not the kid wanting to talk to the parent. Kids just inherently take care of kids. Right? And so I had a mom who's like, well, who's going to who's going to cut my daughter's food at the dining hall if I'm not there? I'm like, it's not going to be an issue. in a what? And I didn't even set it up right a kid, they all walk together. It's like, Oh, what do you need help with? And I just took a little video and texted it to her of like, Here, here's your kid with another kid and everything's cool, that's not something you teach or train. That's just kids accepting kids and feeling like they're not getting judged. There's no hierarchy. And that's what the kids of the kids talk about all the time. I don't think it's anything we do other than consciously we're not in charge. Right? And so in the leaders, we do a lot of training with our leaders who are anywhere age 13 through 21, and they're trained to, you know, make sure everybody's involved. They're trained to certainly when to ask for help from an adult. But it's just like this, natural kind of we're just going to take care of each other. And for parents, where I get a lot of heat is this is the first time mom or dad has ever like given this level of independence to their kid. I have a better appreciation now for how scary that can be. My younger self found it mildly annoying but I get it because they are away and they're not. they say goodbye in the morning and they're not going to see them again to like 6 p.m.. And there's there's some unstructured time built in there. I still remember this mom. She came back and she couldn't find her son. I said, all right, well, what's what's his name? Because I take pictures of everybody and I look and she's frantic. I mean, tears. And I walked downstairs and her son made a friend and they're in the room shooting pool. And so I just take a picture of them and walk back upstairs. she was just like, there was relief. But there was also just like, shock, right? Like, my kid doesn't have friends. I'm like, well, he does now. I mean, like, I can go get him if, you know. No, no, no. So, you know, it's just it's a big step for parents. And a lot of the Parents Summit focuses on how to take that step. And it's the first steps, the hardest. And then it gets easier and easier and easier. and I think once the parents start hearing from other parents who have been through exactly what they're going through currently, that's really powerful for them. I know for myself and my kid was first diagnosed we got done with the initial eligibility and the special ed teacher was like, you know, it was like, hey, you know, I have a daughter a little bit older who who is literally a carbon copy of your kid. and just was like, if you ever want to talk secure in And so that's huge, right parents I mean if you think back to like initial eligibility especially if your kid got identified at a young age. Right. You're sitting in this meeting, you hear the word disability and you hear all these other words and you've got 10,000 things going through your head, And you're not even half listening to what everybody's saying. When's the next opportunity as a parent that you have to get all those people together again in the same room? For a lot of our families, that could be years and years are never that feeling of aloneness is a real thing. That's real, right? And so the summit for them just kind of like makes them feel less alone. that's huge. And then immediately when they reconvene that first night, we have a dinner together and the kids don't want to eat with their parents because they've made friends. And for some it's like, oh, it's it's hard, you know, they let it happen. And I am like, Look, Jimmy's not going to eat dinner with you. I know you think Jimmy's going to eat dinner with you, but I promise you, it's not going to happen right? And they're like, Yeah, whatever. That's not. and purposely I do. I stagger it. So the kids go to dinner or 15 minutes early so I can kind of get them through the food line and get them all settled so that the parents can walk in and be like, Well, how'd you get a cheeseburger? You're eating a cheeseburger. I'm just like, you know, so don't hover parents. it can be an intense experience for parents, seriously, because it's a lot of independence. you know, I think they leave and they're just like they kind of see the light like, okay, I get it. I know. there's light potentially at the end of the tunnel. I've met some people who have gone through what I'm going through. My kid has made some friends. I mean, we do a a social the last night for the kids. And we get a DJ, we get karaoke for years parents would beg me to come to it. I'm like, No, you can't. This is a kid social. finally one year I was like, All right, this is the deal. You can go up on the balcony for 5 minutes at a time. You cannot call your kid's name, but you can watch for 5 minutes. And I mean, their kids are dancing. Their kids are singing karaoke and they're the parents are just bawling. They're like, we don't ever have this opportunity. And I can't believe our kids on the dance floor, you know, or singing karaoke. And, It's cool to let them see that, sometimes, you know, you're just not going to believe it without seeing it. it's quite an experience for sure. It's interesting to everything you're saying. I'm soaking in and I'm just thinking about the constructs we set up for our young people with disabilities. You know, you need the support in school. So a lot of times you have a teaching assistant or a 1 to 1 support, makes them dependent on someone else. Instead of building independence. And I think parents do that accidentally. And I think that parents forget from basically from 11 on, if your kid wants to hang out with you, you're lucky and a group. And it doesn't matter if you have a disability or not. It's beautiful that they are finally having an opportunity to make friends without an adult hovering over them. And I hope I mean, do you see when you see that experience there, do you see those parents taking that as a learning experience and hopefully trying to foster that when they get back home? Yeah, I think so. First learned helplessness is a real thing for everybody, right? So like, if someone's going to do something for me, especially if I don't really want to do it, I'm not going to change my behavior, right? I don't like making myself a sandwich. If my wife was going to make me a sandwich every day, I'd be like, Heck yeah, do it now. That's not a disability thing. That's just a human nature thing, Yeah, I think for parents, I think what I've learned is so I had a mom call me one time and they came to their first summit and the mom called me and she's like, you know, I just want to I just wanted to say we had a great time at the summit. But, Emily just not being self-determined. and I kind of in my head laughs. I'm like, Look, this isn't a magic pill. You don't come here for three days and boom, you're going to start being self-determined, right? You're you're getting exposed it. And I think for most kids and parents, like three years in a row is like the sweet spot. I think it's the first year it's so overwhelming, especially for parents that you've got so much in your head. And I try to tell them, leave here and try one thing, Don't go home and give your kid a chore list and make them cook dinner and you know, and like. Right, because their heads are going to spin, Try one thing and then come back. think that after at least two years, especially if they stay involved with the parent group, the idea of learned helplessness. They grasp it. But I will tell you this, if your kid is 15 understands learned helplessness and has not done a certain task for 15 years that's non-preferred, and all of a sudden you're trying to make them do it, or her do, it's going to take a while and it's not going to be fun, right? I mean, that's a real saying that, but doesn't mean you shouldn't try it. And I think sometimes we get like the whole, paraprofessional one on one support thing. I think we just need to be really careful. And I talk to parents a lot about and teachers. What does scaffolded support look like, how do we promote independence and failures? Not a bad word. I would rather give a kid too much independence, fail at something, reassess, try again with a little more support than give too much support in the beginning to where we never take it away because we're getting the expected outcome I mean, I struggle with that today with my own kids. You know, one just got our license and one is currently I'm teaching her how to drive. And so it's a constant battle. You're not just I've been talking self-determination for 25 years. I still have to think about it sometimes in the context of my own children and what this is going to look like today. It's just a journey. And it doesn't end when school's out, I've been around long enough that some of my original youth leaders are married. They're almost 40. They have jobs. they say, like self-determination is a thing I practice every day. And disability doesn't disappear just because you graduate high school or college it's still there. You might have learned how to use accommodations, focus on your strengths, but it's still a struggle. And I've got tools to overcome barriers. But, at the end of the day, I still have autism and I've got to work on certain things and for whatever reason, a lot of our kids came to us with This idea of disability is only a school thing, and when I get done with school, I'm not going to have it anymore. And it was kind of like, Huh, where does that come from? We got to figure that out a little bit. That's how. Have you ever tapped into figuring out why they feel that way? I think that because it's often associated with where they're experiencing the most failure. if you constantly go to the place and fail, you're going to think that when I get out of that place, I'm not going to experience all that failure. I've had a difficult time really pinpointing outside of they all experience a lot of fear of failure at an early age in school really think that's it. but yeah, it's interesting. It's been an interesting phenomenon. The other interesting thing, I just I just want to touch back on that you talked about briefly is those supports in the scaffolding of support. I think that when doing the IEPs have to be very intentional to say that it's okay if something happens. I want this independence, especially the 1 to 1 support, they don't make a lot of money. They're not trained properly. They feel like their job is just to keep the students safe. And so they they hover. And this poor kid is is stripped of any chance of not just independence, but of making friends because. No, you know, middle schooler or high schooler wants to hang out with the grown up. But the kid who's hanging out with the grown up all the time. I mean, how do you help students and parents with an IEP to make that sort of thing clear? Honestly, with parents, I haven't talked to other parents that are I mean, the whole idea of a one on one support outside of a kid with some significant medical needs. I mean, there's just a lot of research in this does more harm than good. And so I direct them to and they can hear me say it, but I don't have a kid who had one on one supports right now. I have, you know, parents who have gone through that and and kind of talk them through it. And, you know, for the most part, they get their and then we also train paraprofessionals we just trained 300 paraprofessionals for our school division. Right. Because you're exactly right. They think their job is to protect the kid or prevent failure. Right. And when you do that, what are we actually doing that that's not that's not really your job. special ed teachers sometimes. And I as a former or current special ed teacher, former high school special education teacher, sometimes we're worst. Sometimes we're trying to prevent failure so much. My first couple of years teaching, all I was trying to do was prevent any failure because. They've experienced so much already. problem is I'm putting this bubble around them and then they leave and then the bubbles gone right and they fail and they don't know what to do. sometimes special ed teachers are the worst. And honestly, sometimes that starts in pre-K in elementary school. Oh, this kid's really cute. I'm going to do all this stuff for them because. And they think they're being helpful, but they're not. And then you got learned helplessness, right? And that that creeps in so early. So a lot of what I like to do is talk to parents of young children because it is so much easier, you know, so much easier. You know, when I started this project, my personal focus was high school and you can get there, but it is a lot of work. But if you can start this young and get parents on board young and teachers on board young man, it is just so much easier. So, John, with that, I'm curious, what's your vision? take, all the roadblocks out of it? Like, what would your vision be for? I'm determined. Would it start in pre-K? would it expand nationally? Like, what is your lottery winning vision for what I'm determined could be? Yeah. So the two things, one, we just we just expanded into early childhood a year ago because it just it just makes sense. you can build choices into early childhood, just like you can build it into third grade, eighth grade and grade. The second side of that is I'm determined is great and it's cool. And we got a cool logo. But the core of our work, Honestly, we were we're not a curriculum for a reason. And the core of our work is changing teacher practices, changing parent practices. And if I could get people to understand that it is the every day opportunities it is if you're a teacher, it is how you engage your class. So if you if you asked a question to the class and you're only your your procedure is whoever raises their hand, that's who you call on the fastest processors raise their hands. They always get called on. You're not going to build confidence or competence in a kid who never gets asked a question and gets a chance to answer it correctly. Right. So change your everyday practices. Give kids a piece of paper, say write down your answer. Nobody talk, give wait time. When you say go, everyone holds their whiteboard or piece of paper. You see what everyone answered. You can give specific feedback to every many kids you want, It doesn't have to be this epic thing of of leading an IEP meeting of bringing 500 kids to campus for three days and running a summit. Those are all awesome. They work. But what really works are those everyday opportunities that we're not always doing in the classroom. And so if I could get people to just understand that and have an inclusive school, I don't I don't care if it's co teaching Pinocchio teaching, right. But if we look at post-school outcomes, if you grew up in a small town and you went to high school and you never saw kid with a disability and you went to college and you come back home and you open a business, When I walk in trying to get my friend with Down syndrome a job, what's chances you're going to hire them? The chance is zero, right? Because you have no exposure, you have no history. Now go back to you have an inclusive high school. You've got kids with autism walking around in classes with you, kids with Down's syndrome, whatever. Right. You've experienced that. You've grown up with it. They're a part of the community. Then you come back home, you open a business. What are the chances that you're going to hire that kid? I've done it. It goes up exponentially. Okay. But we can't you can't keep doing this isolated model and expecting that the data is going to change, Because it's not. I mean, we've got 30 years of that data, right? And so one community, one school at a time, understanding that that's what moves the needle for kids. And, you know, I've seen I've seen it happen and I've seen it happen. you know, that's how we do it. There'll be companies out there who are going to try to sell you a self-determination curriculum, and you're going to go to this workbook and there might be a good activity in there, but it's not what it's about, sometimes we overcomplicate it, and it doesn't have to cost any money. I mean, it's really just opportunities and opportunities and inclusive mindset cohesion between families and schools and community. if you do enough digging and you look for positive post-school outcomes, that's the equation right there. Think I have to stop myself from like standing up and giving you a standing ovation because that is just a it's so spot on and it's just baffling how we don't realize that yet in our society and that we're still kind of stuck in this cycle of what we're doing. We're almost out of time. I want to hear before we go, just one success story, or two or, whatever, sum up something that just makes you happy when you look back at all the work you've done. Yeah. So I'll tell you story of Daniela. She was at an elementary age. She was diagnosed with a learning disability. They stuck her in self-contained classes. She got to high school. She was still in that self-contained model and got exposed and determined and said, Well, want to go to college? Like I've seen kids with a learning disability who are in college. And she was significantly behind academically because been in self-contained K-8. She fights the counselor, she fights the school, she gets into the classes, she graduates, she gets accepted into a college, she makes it through college, she gets her master's degree, and she's now a lead teacher teaching in an elementary school in an inclusive model, working with students with autism. I mean, that's that's it, right? The sad part is that she's got to fight counselors and fight educators, To get access to it. Look, I can tell you ten of those exact same stories. We've got another student, Ben, on the autism spectrum. His parents tell the story of he woke up one day and he's 16 and going to be out of the house in two years. And they're like, this kid can't cook, this kid can't do laundry. We've been so focused on the every day survival that we have on any future planning. And Ben starts participating in on determined, learns how to advocate, learns how to kind of take charge, learns how to set goals, decides he wants to

There is no crystal ball to give us insight into what parenting a child with a disability is like. But conversations with Lisa Richard sure come close.    Lisa is a mother to seven children ranging from ages 18 to 30. Two of her kids have Down syndrome.    Lisa's honesty and insight is refreshing. She is the first to affirm how hard the early years are and will NEVER tell you that you'll miss those days. She's seen first hand that while early intervention and therapy are important for our children, it only does so much. It's OK to do less, to slow down, to just take a moment to take the caregiver hat off and be a mom.    Almost every parent I've talked to who has a child with a disability says that they are a better person because of their child. Lisa is no exception. She also sees how that experience has shaped the lives of her other children in amazing ways. And she shares how her children's disabilities are making her better at her newest role as a grandmother!   This interview with Lisa is our Mothers Day gift to you.    The Odyssey: Parenting. Caregiving. Disability.    The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.  https://centerforfamilyinvolvementblog.org/family-to-family-network/   TRANSCRIPT:  Speaker 1 (00:00:07): Welcome to the Odyssey Parenting Caregiving Disability. I'm Erin Croyle, the creator and host. Speaker 1 (00:00:19): The Odyssey Podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down Syndrome in 2010. His diagnosis was a shock. I had some idea of what motherhood would be like, but parenting a child with a disability, not a clue. It put my life on a completely different trajectory. Working with the Center for Family Involvement at VCUs, partnership for people with disabilities, we provide children and adults with disabilities and their families with emotional and informational support. Instead of returning to a newsroom, I now utilize my journalism skills to share stories about what it's like living with a disability in a society that has yet to accept, understand, and celebrate it. This podcast digs deep into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving, and disability is, but we don't sugarcoat it for our Mother's Day special. I just had to talk to Lisa Richard. She is a mother to seven children. Two of them have Down Syndrome. Not only is she my colleague at the Center for Family Involvement, she is someone I have long looked up to. Most of her kids are adults now, and not once has she done the whole, you'll miss it someday bit. That is such a slap in the face for those of us struggling to just get through the day. Speaker 1 (00:01:45): Lisa, you are the absolute perfect person to have on for this Mother's Day special. Your perspectives really grounded me through some frantic times, and given that, I wanna start with you telling me and our listeners, if you could go back in time and sit with your younger self ahead of having your first child, what would you say? Speaker 2 (00:02:05): Well, first of all, Erin, thanks so much for having me. I'd really appreciate you inviting me on the podcast today. You know, it's such a significant question. I mean, the first thing I mean, is I would tell myself this journey is gonna turn out just to be more amazing than you ever imagined in ways that you never imagined. You're gonna have to learn a lot. You're gonna have to change your worldview on pretty much everything. But, uh, it's, it's gonna be okay. And it, it has been, it's been better than okay. I mean, my, my life now, um, despite it not turning out in any way that I thought it would is, is just really remarkable. And, and I owe a lot of that to the work that I get to do every day. And the children that I get to parent, Speaker 1 (00:02:54): I feel the same way. I, I can remember vividly when my son was born and we didn't know, and all of a sudden, you know, the Down Syndrome diagnosis was there and I was so worried, you know, I just was like combing through everything I could read, and I was devastated. But deep down, I knew it was gonna be okay. I just had to ask people around me to give me space to mourn and grieve and, and wrap my head around the fact that this is completely different and this child is gonna need me their entire life. I mean, you are kind of in that point. Um, can you tell us a little bit about your kids and how old they are and where you are in your life? Speaker 2 (00:03:39): Y you know, it was a very similar experience for me, Erin. I, I did not know. Um, Zoe is 30 years old now, and in a couple weeks she'll be 31. And so when she was born, she was our first child and she was the first gen child, uh, grandchild on both sides 30 years ago. This was considered to be a very traumatic event, and I'm not saying that might not still be for some people today, but back in the day, this was when the life expectancy was still 25 years old and children were not getting life saving surgeries that they needed when she was born. Um, my worldview and, and the one that I was brought up in was that, you know, your intellect is everything. Whatever you don't have in this world can be made up with trying hard and, and having smarts and, and really pursuing and achieving. Speaker 2 (00:04:33): And so to have a child that sort of instantly deflated that worldview was so overwhelming to me, I completely shut down and was pretty much shut down for about six months. And I mean, that's a whole story in and of itself. They sent a nurse home with me. They were very nervous for me, but I was asked if they wanted, if I wanted to put Zoe in an institution, um, wow. At that point. And, uh, we had decided no, but things got increasingly better as I just started to fall more and more in love with her. I mean, admittedly, I would go out in public and try and hide her because people would say things to me and had some very cool things said to me when she was just a small baby. Um, but as I realized that I was being put in a different situation, I just kept thinking about how can I look at this differently and how can I look at her differently? Speaker 2 (00:05:33): Anyway, I mean, that's a whole story in and of itself. And we've talked about, I ended up pursuing, uh, toys or us had just decided to start using children with disabilities. And I went to a place that said that they did modeling head shots like this, you know, cheesy place. We lived in Connecticut at the time, and you know, she was 18 months, and I just thought she was the cutest thing in the world, and I felt like the needed to recognize that our children were more alike than they were different. And they refused to take her headshot. They wouldn't do it. And we got into this big argument about it, and I just said, well, what would the process look like if we did do it? And they said, well, you know, they explained it. And I said, well, let's pretend she doesn't have a disability and do it anyway. Speaker 2 (00:06:17): And I said, it's their grandparents' money. Just spend her grandparents' money. What's, what are you hurting? Of course, literally within two days we had gotten a call from toys and she was in the first ever catalog that they did. And it was at the time. It was specifically for children with disabilities, but it was really groundbreaking at the time. And so that really started my advocacy in recognizing that if I spoke up and, and I was able to really possibly change a worldview that I felt like had been correct for a while. And I ended up, oddly enough, Erin, because I'm pretty much of an introvert, but I ended up with this group of women that I don't even know how it happened, but it was when I first recognized that if you were with people that were in similar situations, it could just quite possibly save you. Speaker 2 (00:07:09): And I, I don't say that, you know, lightly. I felt like it did. And there were three other women in this group that had just had babies with Down Syndrome. And so just to, we all had different experiences. Some were having heart surgery or looking for it because their hospital didn't offer it to babies with Down Syndrome. They were possibly just being monitored. But having and knowing people that were like me made all the difference after a lot of, um, for us thought and prayer, we ended up deciding to have another baby, and then we had a, a third child after Delaney. We thought possibly our family was complete at that point. And then we made the decision to adopt a baby with Down Syndrome. We heard about a baby in Connecticut that had been left at the hospital after his parents found out he had Down Syndrome. Speaker 2 (00:07:59): And, um, we had the good fortune to adopt Camden. But, you know, at this point, I don't want listeners to like think it was so rosy and exciting and like, I just loved being a mom to a kid with Down Syndrome so much. It, it was more about, um, just for me and for other people recognizing, gosh, their value and they're fun and their, but I was really nervous about it. I was terrified. In fact, in fact, every day I was like, why am why am I doing this? This was probably the most insane thing I've ever done because Zoe was relatively healthy and Tim had multiple health issues. And, um, he had a family that was very devastated. It was an open adoption. So I knew I was inviting like another family into our lives. Berkeley at the time was only eight months old, and so just even the thought of it, Zoe was only six and Delany was two and a half. Speaker 2 (00:08:58): And, and so bringing this other baby, and there's a picture of me with all four of them on my lap, , and I just look about as terrified and nervous as any human, um, ever. And so Cam seamlessly just like moved into our family. And then about, uh, three and a half years later, we found out we were expecting twins. So that was a real surprise. And, and then three years after that we had my daughter Sarah. So right now there's 12 years total between all seven. Zoe is 30, and then my youngest Sarah is 18, and she's just about to graduate high school. Speaker 1 (00:09:39): Wow. When you were speaking, I automatically had two questions, but I wanted to wait. One what? I can't imagine, what would someone say about a baby? I mean, my son has gotten looks and it just makes my blood boil. But what, you've mentioned someone saying something about Zoe as a baby. Speaker 2 (00:10:01): Oh, yeah. Well, again, because of the time 30 years ago, I had a woman approach me in a bathroom, uh, once at a restaurant. We had her, she said to me, um, that, uh, she hoped that if this were to happen to us again, we would make a different decision and not to have the baby. I just was like so shocked. I remember I didn't even say anything to her. I've never forgotten it and have gone through my head all the things that I would say to her now. But, you know, more or less, she just basically told me Zoe had zero value and no worth, and, and that I should, if possible, prevent it from happening the second time. That's Speaker 1 (00:10:44): Shocking though, because 30 years ago is still, I'm not great at math, Lisa, so, but tell me, nineteen ninety, ninety two, Speaker 2 (00:10:53): She was born Speaker 1 (00:10:54): 1992. I mean, for you and I, okay, it's 30 years, but that still feels pretty modern to me. Yeah, Speaker 2 (00:11:01): Right. No, I mean, yeah, we're not talking 1950s or sixties. Um, yeah, no, it was, and it even surprised me and people would just make comments under their breath, different things that they would say about her. I noticed it mostly in the first three months, but partially because I was listening. I mean, you know, after she was six months old, I didn't care, didn't listen, took her out, and was really proud of her and excited to kind of, you know, what, I almost treat as this new learning experience with her, like this opportunity. But I mean, I have grieved for her at all different stages of life. Mm-hmm. when her older siblings learned to drive, and I knew she never would, and they started to leave the house. And, um, I knew she wouldn't be leaving anytime soon when they started college. Um, just so many experiences that possibly some young adults get to experience with Down Syndrome, but Zoe did not and Kim did not. Speaker 2 (00:12:06): And so it's, it's an interesting thing how you feel like you're in a good place and then all of a sudden a life event will happen that makes you realize how different your situation is from everybody else. And sometimes it's a life event in your own family, and you're excited for that child to go and do and learn and drive and get their first job at 16 that, you know, all my kids did. And those weren't, you know, the similar experiences for Zoe and Kim. And so that sadness, you know, in the back of your mind, there's always that little bit of sadness that I don't know that I wish things would've been different, but I wish the world was different for them, that people were more accommodating and wanting to hire them. And all the things that, you know, the difficulties that we face with them since they've become teenagers, I mean, we're, we're in a really pretty good place now. Um, but that doesn't mean tomorrow I might be sad all over again. Speaker 1 (00:13:12): You and I have talked about this before and I think that most people listening who can relate to these situations, we do. We know those waves of grief. It, it's at the first diagnosis or another comorbidity, those dual diagnoses that we so often see with one disability or, I know I personally have a really hard time with my brother's son who's almost the same age as my son. And just seeing milestones and things that just will never be, it was harder earlier. Now it's easier, I guess. But it's interesting because when you mentioned finding space like a safe space with those friends who also had kids with Down syndrome, that's why I find myself gravitating towards friends that also have kids with disabilities because it's just such a different experience. It's a safe space for me where I know if we're hanging out with our kids and they do something that isn't, as you were saying, accepted by society, we can just not, we look at each other and we understand. Speaker 2 (00:14:20): So true, so, so true. I was recently at a wedding with Camden. He was standing in the back with his headphones on just rocking out, which I, you know, would typically let him do. But because we were at this function, I knew there were people videotaping. And I just got that sense of like, my gosh, instead of letting him be, I was like, how do I make this better? How do I fix this? Like this worry that I'm putting other people out, which I usually don't feel, but this event, you know, it was a wedding and um, I walked up to him and, and he just was, you know, singing and . I just was like, well, do I say something? Do I not say something? You know, I ended up kind of tapping him on the shoulder and told him he needed to be a little quieter. Speaker 2 (00:15:11): And you know, again, it's just like, because I could see everybody staring at him and I don't know, there's just so many different experiences. I have a million of 'em. Some have been really interesting ones and some I would laugh off now, but it's been a real journey with the both of them. It's not easy, but I'm a better person. I'm grateful every day for what I've learned for the people I've met. I've just met all kinds of people I would've never known, just been involved in things I would've never been involved in. I mean, it's, it's truly been life changing, but, but it's been hard. Speaker 1 (00:15:45): Yeah. And I wanna, I wanna dive into that a little bit because like I mentioned in our intro, you so often remind me and where we work, everyone has a loved one with a disability. You remind the parents who have younger kids, it gets easier. These years are hard. Don't feel like you need to look back on them as if they were great because they're so hard. So let's talk about those hards. I want to hear about the hards and also the loss of joy of parenting we get, because those societal expectations put on us as soon as our child's born, they enter early intervention, which is amazing, don't get me wrong, but in a lot of ways there's still this fix your kid mentality instead of Yeah. Instead of just letting them be. And you've often used the example of being able to see your oldest Zoe and then Cam, and how all the therapy in the world, it doesn't always matter. So I'd like to hear more about the hard and the societal expectations, but also how society makes us lose out on, on those joys. Speaker 2 (00:16:55): So you're absolutely right, Erin, because I, I mean, I feel like even now we're, we're very deficit focused on how to fix and you know, we benefited from early intervention. I, I think one of the greatest benefits for me was not necessarily any therapies that I received, but just that they came in and talked to me and gave me great parenting skills, like skills that I was able to use with all the rest of my children. This conversation that you're talking about. So like, if you take somebody that's super achievement oriented and is always really focused on doing the best and working hard, and, and so I, when I had Zoe and when I sort of overcame the trauma and the shock of that, I was like, wow, this is just gonna be the most adorable, smartest child with Down syndrome ever. You know, which of course I look back on that now and just sort of see the ridiculousness of that. Speaker 2 (00:17:53): But I mean, we did put Zoe into all types of therapies and she rode horses and I mean, we were just really, really busy and involved with her. And so you fast forward to when we adopt Camden, uh, I now have four children under the age of five poor cam, like, as far as like therapies, like they were so minimal what he, he did get early intervention, but no equine therapy, you know, you know, like all the different things we did with Zoe and there, I mean, it's just so many, anything that was available to her, like we signed her up, you know, I'm not saying I'm not glad I did that, but you're right, like this sort of loss of time of just enjoying my baby, like everything I did was focused on, I remember being a McDonald's and there was a baby drinking out of a straw. Speaker 2 (00:18:46): I don't know what it was drinking, cuz I don't know why baby should be drinking out of a straw McDonald's. But I walked over to this parrot and was like, so excuse me, how did you teach your baby how to drink out of a straw? And I remember her looking at me and she's like, I just stuck it in her mouth and she like drank. It wasn't until I had my second daughter Delaney and was able to put a straw in her mouth and she just drank that. I'm guessing for you too, like if it's your first baby, you don't really know how behind they actually are until you have a typical child and you're like, oh my gosh, they're walking their, they just kind of do things magically it looks like because all the effort that I put in. But so back to my original, you know, story where Kim received hardly any of the therapies, he, for lack of a better term, just is, is much more capable of doing things for himself. Speaker 2 (00:19:43): He's moving about the world. Like I'm thinking of all the therapies that we provided for her and the, and the minimal therapies that Camden got and yet his ability to navigate understand money, like all the things that we tried to get Zoe to do through these different therapies is just like far superior to her. It's, it's just so interesting to me and I feel like sometimes I lost time, you know, and I'm not anti therapy or anything, but I don't know that I would've been so focused as I was like using every minute to try and make sure that she was better or could do things differently or just always like trying to catch her up. I felt like when I was, I was trying to be parent this recognition now at 30 that she's one obviously not gonna catch up and why was I winning her to catch up? Speaker 2 (00:20:42): I mean, gosh, Zoe, everywhere we go, everybody knows her. Everybody loves her. She is most times in public selectively mute. And so we use a thumbs up, thumbs down kind of paddle. We use low tech for her to kind of say yes or no, talks up a storm at home, but we thought it was due to social anxiety and so, you know, we looked into that but it, she just won't speak in public. She is just loved for all that she contributes in whatever way she contributes. And this need for me to make her something different than what she was, that makes me sad. Like I wished many, many years ago I would've just stopped really pushing her to be something other than she was. It's, it's a really tough conversation Erin, because like I said, I'm not anti therapy and I'm not against making sure they have every opportunity cuz I've done that for all seven of my children. Speaker 2 (00:21:40): But certainly Cam had way less opportunity than Zoe and you know, they're just, they're gonna come with their talents and their strengths. I mean, if you would've told me who would've done better as just far as like as the way society judges, I would've told you Zoe, she was the first and she had every opportunity and we were able to throw everything at her and, and Cam was just like, did, was he fed today? Uh, did you know like, uh, what time's his bedtime is he dressed? Um, when was the last time we bathed him? You know, those types of questions when you have that many little kids, I mean, you know, you had a whole group under a certain age as well, Erin, and so like the questions, it's about keeping him alive and he just does so remarkably well. I mean even we are amazed what he's able to do. Speaker 2 (00:22:30): So it was a real sort of interesting experiment if you wanna call it that, that I never planned to have or never thought about. But just as the years went by, he just continued to surpass her and what he was able to do. It was just so interesting to me that, you know, would be the lesser amount of time and energy than we were able to give him. He still did so well. And then, and, and I've seen this in, in some of the other families where there have been parents that have said, you know what, we're just gonna provide the basic supports of the family because the child was the birth order of like the third or the fourth, like Camden and they just didn't have the time and the child did really well or the child did poorly. And the parents like, oh, if I'd only done, and I'm like, you know, I don't know, it might not have made as much of a difference as you thought. Speaker 2 (00:23:23): I feel like we have all this guilt around am I providing enough, like every day am I providing enough to make them the best that they can be? And it's not that we don't have those conversations around our typical children, but it's not like this burning question like, if I don't provide enough, they're not gonna be able to live on their own or do all these things that, you know, we would hope that maybe they would be able to access at some point. And, and how as a society we value independence so much. Like so important to go off somewhere live on your own and be this or that and, and why that's so important to us. Because in other cultures it isn't, family members never moved more than a house or two away. And so I even just like as a culture, I think in the states, we just tend to really value independence so highly and, and so Cam is very independent and Zoe is not. And so in our culture she's looked at not being able to do as much, but everywhere we go, she's the one that everybody talks to that everybody needs to. And it's not that they don't love Cam, but it's just remarkable what she's been able to do with what society would say is very limited abilities. It's just completely shifted the wagon with everything, especially in the disability. Speaker 1 (00:24:42): You really hit the nail on the head when you talk about culture. Lisa, I feel like Americans were so achievement focused, like what can you contribute? What can you do? And time and time again, I find myself overcoming my own ableism with my expectations. And I want things for Arlo that I'm not even sure that he cares about him reaching his full potential isn't the same as my hopes or expectations of him. And I think part of this is because of the whole inspiration porn that we're constantly fed where we're fawning over these stories of people with disabilities overcoming their disability. That happens I think within our own little disability bubbles, probably more so for parents than people with disabilities. So for example, when Arlo was born, you know, I kept looking, trying to learn about Down syndrome and then I saw these leaders in the Down Syndrome community and one of them is a really good friend of mine, David Egan, just an amazing speaker and he's spoken at the UN and done all of these things early on in my son's life. Speaker 1 (00:25:44): It was just like, okay, well if I do the speech therapy and I do the learning program and I do this, he's gonna be able to do all those things too. And I just hit a wall, I put the pressure on myself thinking Arlo's not speaking clearly at 12 because I didn't do enough or he's not reading yet because I didn't do these things enough, but I'm now seeing that it's not about me, it's about him. Like he just does not want to work on these things and some of these things are harder. And you know, I asked you about turning back time, but I look back at like all the therapies that I took him to, but then I also dragged his younger siblings to where I was stressed trying to like beat, you know, we lived in Northern Virginia at the time, so trying to beat the DC traffic to get to aquatics and speech therapy and then my two year old's naps were all messed up and I was killing myself trying to live up to expectations. Speaker 1 (00:26:50): And I think we as parents do each other this disservice by not just being honest and saying, you know, you meet one kid with Down syndrome, you meet one kid with Down syndrome, you meet one kid with autism, that's one kid with autism. And we're constantly putting the valedictorians of that community on these pedestals and it's, it, it sets unrealistic expectations, which we should celebrate these people. Sure. But that it's doing a disservice I think, to our children because we're putting pressure on them to do something that, that I don't not sure they care about. I don't know. I mean I think that's why your perspective is so valuable because you have this living example in your home of doing all the quote unquote right things and then just letting it be, I, I don't know, I, I wish that we could have more honest conversations and I think especially as mothers, any inadequacy of our children is automatically put on mothers either from ourselves or from society. Do you feel that sort of pressure as a mother or are you able to let it go at this point? Speaker 2 (00:28:07): There's sometimes that I do still feel it. My, my children all follow on Instagram, multiple families that have children with Down syndrome or they follow adults with Down syndrome. And, and usually these stories are remarkable. These either as children or young adults, they're modeling or doing really significant things as young adults or teenagers and my daughters, you know, bring to me in like, look at this and, and there'll always be this moment of like, oh my gosh, maybe I didn't put enough time into it or effort or maybe I wasn't just aware or just the many kind of rabbit holes that all fall into when I see those things, which I didn't have. Like you guys are kind of in a different situation because I, you know, I didn't have social media that I only had me and the few people that I knew. And then of course the really antiquated books that I read. Speaker 2 (00:29:04): So there was no real push. I mean I think mine was an internal just because of who I am. It's really unfortunate because I feel like part of why we do that is because it makes society more accepting of them. Like, wow, down Syndrome is cool because they really can do so much, you know, and is it as cool when they're not doing as much or they're doing something that's considered embarrassing or whatever. And there's this one young woman that my daughter follows and she's just such a beautiful girl and she's really trim and she's learned to drive a car and just like all these things. And I'm like, oh my goodness. But I mean, at the same time I I, I understand it and I realize that parents are possibly doing this because it does help. It's like your typical children, if you have a really bright child, schools really wanna help that child and wanna, you know, the smarter the whatever they are that people really kind of rally around that. Speaker 2 (00:30:09): And so I, I mean, I can understand why it happens, it's just unfortunate to some extent because in finally letting go of my expectations and Zoe and like you said, focusing on things that matter to her. Like what is really important to her because that's what she's good at. What she, what she, what's important to her is what she ends up being good at. Cuz that's what she'll focus on. She is a master crochet. We've tried to have her teach people how to crochet, but she's so fast you can't learn from her because she's just so fast and she makes all these really interesting patterns and colors and, but she loves creating. And so focusing on those things as opposed to like, do people understand her speech all the time? Is she learning to do the things that everybody else says she should be learning to do? Speaker 2 (00:30:56): And really focusing on her creative side and the cool things that she's able to do when she crochets. And the more interesting part is sometimes Erin she'll make these just like crocheted squares, right? So they, I mean it's a square, the interesting colors and she'll give them to people and I'm always like, oh my gosh, okay, she's given one of her squares away. The responses are so interesting to me. So first of all, everybody tries to make it into something. Oh, I'll use this as a pot holder or I'll use this surf or whatever. And then they're always so grateful. Like, I'm just amazed at how grateful and how fun those interactions are with Zoe because people are appreciative of her efforts. People don't normally just give things to people and, and they're always like, wow, that's so cool. Thank you for thinking of me. Speaker 2 (00:31:49): You know, it's just true. Like try and force 'em to do things that they don't wanna do and yet, gosh, their talents would be so much better used elsewhere in the ways that they wanna direct them. But as a parent it's just really hard to let go and it's really hard to let go, especially if you're in a school that's saying, we need 'em to do X, Y, Z or you're in a doctor's office, it says we'd really like 'em to be able to achieve this. I mean, it wasn't really until Zoe and Cam got outta school, which is its own sort of traumatic thing of transitioning into adulthood that I was able to let go and say, well what, what do, what do they want? Not like, what does everybody else want? What does a school want? What of all the therapists that they had at school want? And what is it that's really important to Zoe and Cam in looking at those things? And it, it's made a big difference for us. Well, Lisa, tell me a Speaker 1 (00:32:38): Little about that. As any parent knows, you blink and oh my God, they're 12. Yeah. And I, you know, now I know I'm gonna blink and my son's gonna be graduating from high school. Yeah. And we hear a lot about the transition cliff and I think we like to think it won't happen to us. So tell me a little B bit about that and kind of how you navigated it and how it's going because it's still going even though Zoe's 30 and Cam's 25, I assume. Speaker 2 (00:33:10): Yeah, it is. Um, it was, uh, it was really hard. And again, that was one of those periods of grieving again, because recognizing that the state we're in doesn't offer a lot of supports. Neither of them. They've been on the waiver wait list for years and still hadn't been able to access it. And I don't know that that would've even been that helpful at that point in time. What I missed was, and what they really missed was the structure of their everyday life because structure's important to them and it's important to a lot of people and they no longer had it. And Zoe didn't quite understand why she couldn't go back to school. I mean, she grasped that she had graduated, but it's kind of an abstract concept. And so, you know, she wanted to go back. She missed her friend, she missed the people, she missed the interaction. Speaker 2 (00:33:59): And um, and so grieving around that and what was I going to do for her now and how would I provide some sort of everyday stimulation for her? Like where would she go? Wasn't like she had really close friends, unfortunately that hadn't left to go on to school. I mean, there's lovely people in her life, but they live their lives and eventually they end up moving or marrying or, you know, over the course of many years since she's graduated, even those that are most well-intentioned move on to something else at some point. And so this has probably been the greatest challenge I feel is, is how to kind of help them create a meaningful life after they graduate high school because they're, there's nowhere to go. And that's been real tricky in saying all of that, focusing on the things that are important to them. Speaker 2 (00:34:55): I mean, I've really discovered some interesting talents that they have that I probably never would have. Kim is a master at editing videos and he is like the keeper of all of our get together a lot. I have kids all over the country now that have left to go to school and they're doing multiple things. And two of my children are married and anytime we're all together, which is as much as possible, Kim's taking videos and he's editing videos and photos and he puts them in our group chat and we have just all these like great memories because Cam has done these remarkable videos of all of us and used a really sophisticated sort of editing software to do it. My kids have all incorporated things that Zoe's made for them into their lives. They're on their refrigerators or hanging up in their rooms, or she's making like a small lap blanket for them. Speaker 2 (00:35:51): And they have that. And this crocheting that she does has really kind of been such a bright spot in all of our lives because she'll give them as gifts and at Christmas and different things. And we have been fortunate enough in our community that we have a nonprofit that now does multiple things for young adults with disabilities. And so they're kept very busy in something that they are engaged in and love every day. And that has made a big difference. But I recognize so many families don't have that. We just were really fortunate where we live. Speaker 1 (00:36:27): Yeah, and I wanna touch on that too because, you know, you mentioned the waivers and I think something that no one realizes unless they're in it. I know that none of my extended family can even fathom what waivers mean and understanding like you're waiving your right to live in an institution, but there's so many funds out there. So the funds are for community-based living, but Virginia's wait list is, is it tens of thousands long? I mean it's, Speaker 2 (00:36:55): It's about almost 15,000 now. Speaker 1 (00:36:57): 15,000. And so, you know, I relocated from Virginia to a state where there is no waiting list and you can get a waiver, but it's interesting in any way, like us as parents and you as a person, Lisa, like the way that our children's disability will impact our lives forever. I know for my husband and I, I'm not sure we'll ever leave the state that we're in because of what my son gets to that waiver that he absolutely needs because, you know, he is not gonna be able to function in our society the way that everybody else can. So he needs those supports in place that provides for personal care, attendance and support staff and medical care. And so how has this impacted you and your life and how you're handling your future and the dreams that you had for yourself as you grow older? I, I think that it transforms from the time that they're born. And so it feels like it's a given, you know, by the time you're where we are, I know I will probably never live in Europe or wherever, like I'm here , whereas before I might have like retired to Costa Rica or wherever. Yeah. You know what I mean? Right. Speaker 2 (00:38:17): Yeah. No, Speaker 1 (00:38:19): We talk so much about our kids because there are everything and we're mothers. Yeah. But what about you? What about your dreams and how those have changed and how you're finding joy in your dreams, the way Speaker 2 (00:38:34): That they've been modified? Oh, it's such a great question Erin, because I'm really adventurous person and I love to travel. And so there have been many times where I've just thought about, this is a horrible word to use, but I feel trapped somehow in the state of Virginia. So Camden has gotten the waiver now and Zoe's on a medical waiver. And the thought of leaving the resources that we do have now is just really scary. And I'm not saying we couldn't move to another state and access a different waiver set, um, but these are the resources. I know we waited a really, really long time to get them. I have friends that are empty nesters now that have sold their homes and moved to other places that were sunnier or near a beach or on a lake and, and I am just like, you know, again, that was, I don't wanna say I grieved, but just that realization that, uh, that would probably not be mean. Speaker 2 (00:39:36): That we are gonna stay where we're at. I mean, certainly we could move where we wanted in Virginia, but even that gets interesting because different parts of the state access resources in different ways and you know, is that a good place to go? Is that actually gonna work? Like you get nervous about leaving because you know what you have here and is it gonna be better or worse? And especially as they get older, and Zoe and Kim have learned to love where they're at and they have people that they love here. So it's, it's an interesting question. I look at it differently now, you know, as I've gotten older, I'm in my mid fifties now, and you start to appreciate things in a different way. Mm-hmm. those things that were super important to me about leaving or doing or going have sort of transformed into, do I have peace in my life? Speaker 2 (00:40:31): You know, are there good people in my life? Um, I able to see my children as much as possible. Those things have become almost more important to me now. You know, I always say I wanna, and of course I can say this to you because you'd understand, I always like, I would love to live one day longer than Zoe, you know? Yeah. Um, one day longer than Cam, just to make sure that they're okay. And that's probably not gonna happen. I, I value different things that I valued maybe 20 years ago or even 10 years ago. I am more content, I think with less the adventure side of me will always wanna go and do. And, and that maybe will be a loss for me. But again, I feel like I've gained so much more. I've learned so much and just been so privileged. I feel in different ways. Speaker 2 (00:41:24): In some ways it's been really, really hard. But, you know, cam, when he was little, he ran away all the time. He had a little issues. I thought I would never live through it. We had the police called on us, he, he hit in a hot van. A neighbor called the police on us and we were threatened to be taken to jail. And, uh, we live on a creek and I thought maybe he was in the creek. I mean, I just can't even tell you the times where I was hysterically upset, traumatized by our lives just because of their disability and how it manifested itself. Zoe was not a runner, but Cameron ran all the time and we didn't even know where he was going. I don't even Cam knew where he, he had away from school once and was two miles up the road on, on an, an interstate. Speaker 2 (00:42:12): And the police department found him down running down the road. I mean, there's just been so many times that this has been so, so hard. I mean, it's still really, really hard. I mean, there are days that are really, really hard, but that's kind of what I'm saying. Like having some peace and knowing they're happy and good and my other children are happy and good. Those are one of the things that are most important to me now. Not that I still don't hope to travel and do all those fun things, but it's just changed a little for me. I think Speaker 1 (00:42:42): Lisa, everything you've said is just so powerful and spot on and I just find myself clinging too when you said you wanna live one day longer than Zoe and one day longer than Cam. And I'm having a hard time keeping my composure. I don't think I've ever heard you put it that way before. Um, and that's a lot for us to live with as parents because I don't think you're alone in that. I know that you're not alone. It's something we hear repeated over and over by our peers, uh, by fellow parents that are in similar circumstances. Speaker 2 (00:43:23): That's right. I mean, am I right? Like that's it one day longer. That's all I wanna do. So I do, I do think about it a lot. You know, how long I'll live, but I'm like, well if I could live to 84, you know, then Zoe would be six. Maybe she'd be okay and may maybe I'd know that she was already, but you know, I don't know that any age will be enough for me, Erin, that I'll be comfortable leaving Zoe and Cam because in some ways it's like leaving children behind. Um, you know, and I don't mean to insult them in any way by calling them children, but because they're always gonna have to have people look after them. It's, it's hard and it's sad and Speaker 1 (00:44:05): It's this interesting thing where, um, it comes up constantly with us. This is part of why I gravitate to friends who are in it because this is something that most people, you don't have to think about every day. Yeah, of course. It's a fear as a parent, we have to outlive our kids. We want to, because we know that the supports aren't necessarily there. I mean, it's just something that, that was one of the first things I read about life expectancy and Down syndrome. And I know a lot of parents with children with different disabilities, the life expectancy is lower, but you know, there's still that cusp of like, will I outlive my kid? And the devastation of that, will they understand losing a parent? I mean, this is just this unspoken horror that we have in the back of our minds all the time. Speaker 2 (00:45:07): Yeah. Speaker 1 (00:45:08): Um, and I think we need to talk about it more. And I hope that by building community and being open with these things, maybe we can help each other in that or help fix some of the errors or flaws in our systems. So this doesn't have to weigh so heavily on parents like us. It is such a struggle. You know, our children require a lot of care and a lot of assistance in activities of daily living as we call ADLs. Right. But we have friends, we have colleagues who it is total care Yeah. Whose backs are going out because their children are becoming older and like they need lifting. And it, I mean, where do we find help for this? Because community-based living should not heal the parents. Like I, like I I I wonder how we change this. Speaker 2 (00:46:12): Uh, I don't know, Erin. I mean I, I feel like we're so fortunate cuz we're in such a strong community of colleagues and friends and people that know some of our struggles. But at the same time, you know, I was talking to my a adult daughter the other day and she's in the past said that she is really, really comfortable with taking either Zoe or Kim or both if we're unable to get them into a situation where they're able to live even semi independently. And this past weekend, she doesn't even know this, this past weekend she came in and she was talking about how she was saying about living in Tennessee cuz they wanted to buy land. And I, unbeknownst to her, instantly panicked because I'm like, well that means the loss of their waivers and then that means you're no longer a viable option to me. Speaker 2 (00:47:10): Like it became this really weird conversation in my head that I would never have otherwise. And I didn't say anything to her nor would I because I would don't wanna change her life trajectory. But it, it really scared me and all of a sudden pulled out a support that I was just like sort of banking on and thinking about. And I don't know what the answer is, Erin. I don't know that there is, it's just a lot of trust and hope and systems maybe will get better. And you know, you've asked me many times about, and I'll try and say this without getting emotional, you know, when I look back when the kids were little, I was completely overwhelmed. Cam was running away, the twins were running everywhere. Um, I was trying to figure out how to help Zoe with different things and, and, and then trying to fulfill the needs of all my typical children and all that they wanted to do. Speaker 2 (00:48:14): And I have adamantly, as you know, said, I will never look back on this time and say, oh, I wish I could go back to this because I would've so many people come up to me and say, these are the best times. I'm like, really? I haven't showered in three days. I haven't slept in probably years. Um, I mean literally went through years where I probably never got more than three hours of sleep at night. And so now that I'm on the other side of that, that's super intense caregiving. I don't miss it. It was, it was a lot. And I was lucky to live through it. Quite honestly, what I miss her is thinking that I had time and I realized my, my time is getting shorter. That's what I miss. I miss more time to figure this out. Like how do I figure all this out? Speaker 2 (00:49:05): How do I, how do I make it work for them so that they're happy and loved and my typical children are able to enjoy them as siblings and not as possibly people that I need them to take because I don't know where else for them to go or how to set this up. I mean, there's just so many questions that I still have and there's, you know, there's lots of great programs and there's circles and all those things that we're supposed to look at and like in the inner circle, in the outer circle and who are the people you trust and, and all that stuff. And yet one day your child can say, oh, you know what I'm thinking about living in a different state. And then it completely changes what you thought was gonna happen. And so I don't miss every day like being so overwhelmed and traumatized by like my many caregiving tasks, but I do miss feeling like I had more time to manage what would be coming in the future. And now, I mean, my youngest isn't even for college this year, and so it's just gonna be myself and Zoe and Cam. So I'm hoping that now I can really put some efforts into figuring this all out. Speaker 1 (00:50:21): It's funny when you say that, Lisa, like I'm going from being emotional to being mad as hell because there are easy answers for, for this, which are changing our policies on a state and federal level. Why can't these waivers cross borders? There are so many roadblocks that are systematically in place when you have a disability. I just think about the advocacy that I wish I could do. But then I realized that just last week, our friends in the Down syndrome community, they had an advocacy day on Capitol Hill in DC and one of the things that they're fighting for is to stop organ transplant discrimination. Yeah. Because some states still don't allow someone with Down syndrome to get a life-saving organ transplant because they don't believe their quality of life is worthy enough of having their life saved. And so when I think about something as simple as let's fix our waiver system so our adult children can live as independently as possible, and if someone wants to move to a different state for whatever reason, they can still have the supports in place. We still have to fight for surgeries that save your life. I can't even imagine like, how are we gonna convince Congress to do that? There are only so many hours in the day and I just get so mad that, that the ableism in our, our world is just so blatant, but yet no one cares to change it. It's infuriating. Speaker 2 (00:52:04): You know, Erin , I mean you think about Zoe being born 30 years ago and, and like I said, the life expectancy was 25 and it was because they weren't performing any surgeries and that 30 years later we're still fighting just for them to be recipients of organ transplants. It's, it is remarkable and it shows the little amount of progress that we have made. I, I'm amazed all the time in doing and taking camp places because I do try and, you know, Zoe and I are flying this coming week actually we leave on Wednesday, cam refuses to fly and I'm taking Zoe with me and worried about getting on the plane and how that's gonna work and I'm worried about going to another state and how that's gonna look when I, you know, get off the plane. And there's still, even though I'm not looking at, you know, accessing those physical needs as far as like wheelchairs and things like that, it's even, we went to a play the other day to see cats, you know, where we were sitting. Speaker 2 (00:53:12): It wasn't accessible to her to see the stage because she's so short. But we weren't really eligible for the accessible seating because she wasn't in a wheelchair. And so just like trying to navigate all these like little things that every day that I have to think about with her is just really a struggle. I definitely hear you. I mean, why, why can't I move to another state if I want to? Because I'm so afraid of leaving with the little resources that I have here and why can't my children go wherever and still be able to maybe have their siblings live with them because they have a waiver, but they can't, it just doesn't work that way. I mean it's just like you said, we're so far back that we're still fighting for organ transplant. How do we even get to policy to keep waivers so that they're, you know, um, working across state lines. Speaker 2 (00:54:02): So, and Tennessee is so different from Virginia. I mean it's completely different waiver system. It's not even similar. It's completely different. You do everything differently in Tennessee. This is the other thing about it too, Erin. It's not only that the waiver is different, it took me years to understand the waivers and how they work. Like now I would have to go to another state and not only do I lose the waiver now I've gotta learn an entire system and the mental energy to try and figure all of it out and who I need to know and where I need to go. And because there is no single entry point for anything in any of the states and like all the different places that I would have to try and figure things out. It's just, it's, it's so overwhelming sometimes that, you know, you're like, I'll just stay put. I'm just staying here, just gonna . I might have moved but I'm not gonna move. I'm just gonna sit right here in Virginia and uh, know what I know and I'm happy to know it. Speaker 1 (00:54:55): I can very much relate because I was in Virginia, my son actually did because of pregnancy complications, got the creme de la creme of waivers in Virginia. And the only way I would leave Virginia is to go to a state where I knew there wasn't a waiting list because unfortunately getting a waiver, which is necessary, it's like winning the lottery in some states. Yeah, Speaker 2 (00:55:21): It is here, but I Speaker 1 (00:55:22): It is in Virginia. Um, thankfully it's not here, but I mean I am still not up to understanding everything here. And I've been here five years now. Even the school's jargon is different and I'm still wrapping my head around it. And not only that, but establishing medical care in another state. Yeah. For a kiddo with complex medical needs. And then knowing that when you have down syndrome, if you live long enough, you will get Alzheimer's. That is literally does happen medical proof that that is what we're looking at. So, you know, you need to have established medical care wherever you're going and finding specialists that care. I mean, I went through five ENTs before I found a good one for my son. Took me like two to three years to find an E N T that cared about understanding down syndrome. It's exhausting. Speaker 2 (00:56:21): It is exhausting and is exhausting and I wish it were different thinking about Zoe and Kim and their medical care and then transitioning to adult medical care and all that comes with that because pediatricians don't necessarily even know enough about Down syndrome. And then having to move out of pediatric care into adult care, especially when there's complex needs involved and things that people don't understand and physicians don't understand. And then you're trying to educate the physician on what they need to be looking for. And especially, I live in a rural community, so when just the numbers are small, there's not a lot of people that are interested in educating themselves in all of Southwest Virginia. Neurology's an issue finding a neurologist. There's only a geneticist on the Tennessee line and at Carilion and Roanoke. And so we have no access to that. And really looking at those social determinants of health, had I known better, I would've made sure I'd planted myself in a place that I had access to a lot of things. Speaker 2 (00:57:27): Um, it's worked out because Zoe and Kim right now are medically stable and we can, we can take care of their care, but I I, I have a lot of friends that are in really tough situations in rural areas and they just don't have the means to get out and they're having to cross state lines and insurances aren't paying for this or that and they're on phones for hours fighting for different types of care just to keep their children alive. It's a story that a lot of people don't know about. And then friends that have children with really significant behaviors, there's not enough residential facilities. It's just, it's a lot. It's really a lot. And it's, and it just, and it keeps changing, you know, as you get older like, and they get older, what can you still handle mentally and physically as an adult because you tend to get more tired and sicker too as we age and come up with different things. And yet we're still managing the care for our adult children with disabilities and trying to figure out what's best for them. I talk to, as somebody that supports parents and families and caregivers, some of them are just in really, really tough situations, and it's heartbreaking for them and for their children and for siblings too that sometimes end up taking a really significant level of stress on because the parents no longer able to do it. Speaker 1 (00:58:47): Oh my gosh. Yeah. To the point of communities not being supportive, I live in an area that likes to think of itself as very inclusive and, and very aware of events. And when they talk about diversity, equity, inclusion, there's so much excitement there. But if you say, well, but we need to make sure that disability is included in that equity and inclusion. Speaker 2 (00:59:09): Yeah. Yeah. They're Speaker 1 (00:59:11): Like, oh, but we can't get to that yet. Literally, we'll basically say that, right? It's d e i, but not when it comes to disability. And I hear this conversation time and time again, and it again, it's infuriating, you know, recognizing the intersectionality if you include racism and then ableism. Holy cow. That is awful. Yeah. So we need to do something. This is so serious, and I'm feeling like angst inside me. I wanna, I wanna transition to siblings and maybe talk about some of the joy in what you see. Yeah. Because I, I could use a little joy right now. , um, uh, agreed. Very dark, which is important. But I mean, Lisa, I see with my kids this level of love with the siblings, with their brother. This level of, of not taking any crap just because he has Down syndrome. It's just this really unique, beautiful situation that I just love watching. Speaker 1 (01:00:08): Uh, it's also really hard too though, so I wanna hear about some of the joys that you see and maybe also give a little advice for us that have younger kids, because I know that for me, with that sibling dynamic, I know so often you, we say, oh, I don't give my kid the Down syndrome card. They have to do all the things, but I can't get my oldest to do chores. And so if Arlo won't do chores, then his younger brother and sister are gonna be like, well, Arlo didn't do it. So I'm not doing that today. So I wanna hear about some of the joys, but also maybe some ideas for helping with some of that equity within our own household. Speaker 2 (01:00:46): Yeah. So if we had a five hour podcast, I couldn't talk about all the joys, you know, like there's my gosh, you know, they love Zoe and Cam so much, Zoe and Cam love them so much. It's uh, it's just such a fun dynamic to watch them all get together and do things together. And there is like, kind of what you mentioned with Arlo, like zero excuse. Zoe's not helping, Zoe's not doing this. Cam's bothering me. Like nobody's sitting around in my house like, oh, cam Zo down syndrome, so I won't say this or that to them, you know, it's complete equal treatment for the most part as far as ribbing and having fun and teasing and being annoyed and, you know, seeing them grow up. They would ask me questions and, and this whole recognition of, you know, them being different and what that means, and we've had that conversation many times, but it has transformed into this fierce advocacy on their behalf and on other people's behalf. Speaker 2 (01:01:53): They just grew up with this sort of, um, entrenched sense of social justice because they would see Z cam maybe, you know, cam once got in school suspension for something that was really ridiculous and he had no reason to be forgetting is ss for that. And, and my kids, you know, going to the office and my youngest, we, we have this really unfortunate situation here in my town where the town track is not allowed to have wheels on it. Oh. Which includes wheelchairs. Okay. . So they won't allow it because, so they said no bikes, no strollers, no wheelchairs. Well if that's your, how you access your environment, like how do you go on the track with your family? Mm-hmm. and my daughter has stood up to her superintendent has stood up in meetings, and Zoe or Cam don't use a wheelchair, but it's just so infuriating to her. Speaker 2 (01:02:55): My daughter Berkeley, who's an artist, has started an accessible art camp that she does once a year. She gets a grant for and is able to teach all different types of art to all ability levels of children, typical and otherwise. And, and how she's really built this into something that she wants to continue to pursue. And my other daughter, and she has her master's degree now, and she has turned all her advocacy into like, how do we help people that are unable to help themselves, whatever that looks like, you know, and, um, works in domestic violence shelters and does all kinds of stuff. And so this social justice component that I could have maybe talked to them about it endlessly, they grew up like seeing how there were injustices against their siblings. And they learned to just recognize now instantly, no matter what that social injustice is, you know, whether it is racism or ableism or whatever, they're always like, that's wrong. Speaker 2 (01:04:04): How can we fix it? What do we need to do? How can I change it as a parent, my gosh. Like, I couldn't hope for anything better than them to be these amazing people that are trying to do amazing things in the world and help those that are unable to, for whatever reason, help themselves or are not in a situation to do so. And, and they're just so fun, you know, like they're so adult. Children are so fun and they're so great with Zoe and Cam, and we go to the beach and we just do all these like, fun things. And even when we're just at home, which is a lot of the time, because as you know, it's very hard to travel. And there's been many things we've been unable to do because of Zoe and Cam, for whatever reason, I went to Disney World once, it was, it was the place of torture for me. Speaker 2 (01:04:46): Zoe wouldn't walk, cam wouldn't get on a ride. And I'm like, this is supposed to be the most magical place on earth. It's turned into the worst place for me. And I would, I was thinking like, they're gonna love it. And like, you spent all this money and it was just like, and in the end, we, the three of us, I was left with Cam and Zoe because my typical kids were like running off the different rides and stuff. And the three of us all like silently agreed we would never return because it was just too hard. But it's been really amazing. Like the the sibling thing, the sibling dynamic has been something I never would've anticipated, never realized like what a gift that would've been. And you know, I always thought, well, maybe they're gonna be embarrassed, but my son is picking me up at the airport with Zoe next week and can't wait to show Zoe to all of his friends and out at college and is like planning on taking her to the pool and like all these great things. Speaker 2 (01:05:39): So I think that's gonna be something really fun that you see, Erin, I mean there's, the equity piece is interesting because they'll do the same thing to me. Like, well, if you're not gonna make Zoe do it, then why do I, they'll do that. They'll pull that stone on me as a adult, not the older adults, not the late 20 adults like that. 18, 21 year old adults will try and pull that stuff on me. And I'm like, well, you know what? Why don't you assist though? The two of you can do it together, that piece you're, you're gonna love. It's great. And it's, uh, it's been, yeah, it's too much for me. Hardly even, like, I just can't even believe how wonderful that has turned out. And I would've never guessed it. Speaker 1 (01:06:18): I love that you say that. I, it's interesting I have to share. My 10 year old said something, uh, he is so wise and he said, mom, you know, I wish that they would teach more about disability history in school because we're learning so much about race and things are getting better the more we learn about it. So maybe if we learn more about disabilities, people will be better to people with disabilities. It's like, yeah, thank you. Speaker 2 (01:06:45): Yeah. , I instead out of the mouth of babes, right? It's, uh, it is amazing and he'll just, I mean that, that beautiful spirit will just keep growing and doing amazing things because he's already learned this at 10. Most adults don't know this, Erin. He's learned it at 10 years old. And that'll just continue to just like grow in his sense of justice and, and helping. It's just, you'll just be so proud. I'm just so proud of all seven of my kids for all different kinds of reasons and, and the different paths they've chosen and, and all of them have been heavily influenced by Zoe and Camden and the families we've known and things that they've seen and learned just growing up with, with siblings that are considered different. It's been amazing and it's been really beneficial to Zoe and Kim as well. And, and I know that there are families and they're not siblings and so that's a different dynamic, but sometimes there's cousins or other family members. Speaker 2 (01:07:46): It's definitely been a gift for Zoe and Kim and it's been a, a gift for my other children. I mean, if you were to ask any of my children, even the 18 year old, they would've not chosen our family to be any other way despite all the things we couldn't do. And there were many, I have lots of friends that take really significant family hikes. I would've loved to have been a hiking family or a biking family and Zoe couldn't ride a bike and she wouldn't walk for long periods of time. She can actually walk for longer periods of time, she just won't walk for long. Mm-hmm. . And so those like fun outdoorsy things that I always thought we would do as a family we weren't able to do. I don't know, I just think we have so much joy in other ways that I just really try and focus on those things and, and they've never let me down. Like there's just so much other things that I've been grateful for that I've not really missed that stuff too

Every April 10th our social media feeds are flooded with throwback photos in honor of Siblings Day. It may seem like a stunt to keep us scrolling, but it's much more than that. In fact, there is an ongoing effort to get the United Nations to officially declare it "International Siblings Day."    Siblings Day hits differently when a brother or sister has a disability, especially one that comes with medical complexities. The dynamic looks nothing like the stereotypes we've come to know. In some houses, the big brother/sister role might be blurred. In others, a sibling might have to pitch in with caregiving.    Try as they may, although there is always more than enough love to go around, it's nearly impossible for parents to distribute their time and attention evenly.   That's why we're dedicating this episode to the siblings that we see go above and beyond every day. The young people joining us understand empathy and patience better than most adults.    Take a listen, you might learn something.    The Odyssey: Parenting. Caregiving. Disability.    The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.  https://centerforfamilyinvolvementblog.org/family-to-family-network/         TRANSCRIPT Speaker 1 (00:07): Welcome to the Odyssey. Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host. The Odyssey Podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down Syndrome in 2010. His diagnosis has taken my life on some unexpected and spectacular turns. (00:36): This wild ride has brought me here, working with the Center for Family Involvement at VCU'S Partnership for People with Disabilities. This podcast digs deep into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving, and disability is. But we don't sugarcoat it. The challenges are many, most of them because our society has yet to fully accept or understand disability. You know who does seem to get it though? The siblings. That's what I've seen in my years of being a mother and a disability rights advocate. And I see it in my own house with my son's younger brother and sister. In fact, my 10 year old a Emil is the catalyst for the Siblings Day special. A Emil's understanding and empathy of the human condition is greater than most adults. I know (01:31): You may be aware of Siblings Day. It's observed in the United States on April 10th. And while a lot of us see it as sort of a social media stunt to post pictures, it's much more than that. Three US presidents have recognized the day, most recently, president Barack Obama in 2016. There is an ongoing effort to get the United Nations to officially declare an international siblings day. Now, when I think of Siblings Day, I think of the guests I have here today, Dean Rigdon, Neela Chatterjee, and a Emil Croyle-Sheire. All of these young people have a sibling, not just with a disability, but also with significant medical needs. I am so excited you're here. Welcome. Uh, I wanna say that I am sharing a mic, and so my son a Emil is a little fidgety, so if you hear a little background noise, that's it. I wanna start with each of you telling us a little bit about yourself, your age, your life, you know, maybe what grade you're in, what you love to do, share kind of your family dynamic for us. Dean, why don't we start with you since you're the oldest. Speaker 2 (02:38): Oh boy, I thought you'd say that. Well, I'm Dean. I'm a senior in high school right now. I enjoy, I guess Dungeons and Dragons. I enjoy, um, swimming. I enjoy writing too. I'm a writer, family dynamic. Oh boy. I mean, Penny's awesome. That's my sister. I also have a brother, so they're 14 and 12, both younger than me. I am the oldest. Um, we didn't have Penny until I was about four, so I do actually remember that. Um, Speaker 1 (03:10): Dean, can you just tell us, uh, I know Penny, I'm lucky. I wanted to have people here that I knew so I could kind of help with questions, so I know all of these kids well. So Penny is your sister and she has Down Syndrome and some other medical needs. Are you comfortable describing those? I mean, they're no one's business, but if you feel like you wanna give a little background, you can or you don't have to give any Speaker 2 (03:32): Yeah, I can. Uh, even just recently there's also been a lot of developments. So she has Down Syndrome, which she's had for, you know, her entire life. That's how that works. And then, uh, she's also had, was diagnosed with Type one diabetes three or four years back, so type one diabetes. Uh, and more recently also diagnosed with, uh, celiac and Alors Danlos, like connective tissue disorder. So a lot of stuff recently that we've been dealing with, so. Speaker 1 (03:59): Okay. And I wanna, we're gonna dive a little deeper into that in a bit, but I wanna go next to Neela. So just a refresher. So I wanna know a little bit about you, maybe what grade you're in, what age you are. Uh, if you could tell us about your new pup and your brother. And if you want your mom and dad, it'd be great. Speaker 3 (04:17): I'm Neela. I turned 11 about a week ago. I'm in fifth grade. And um, my brother is Oliver. He's 15 and he was born with cerebral palsy. So he uses a wheelchair. He can't walk. He uses an iPad to, um, communicate and talk. And he is chin fed. In, um, August we got a new dog named Rocket. He's a Bernadoodle and he's six months old. And some things I enjoy. I like climbing, I like, um, I like drawing and writing and I like swimming and stuff. Speaker 1 (05:03): Uh, next up I'm moving the microphone over to my son, a Emil, a Emil. Do you Speaker 4 (05:08): Remember the questions or do you want me to repeat them? Can you repeat them? So Emil, I want you to tell Speaker 1 (05:12): Folks how old you are, what grade you're in, the things that you like to do, and then describe, uh, maybe the family dynamic, your Speaker 4 (05:20): Brother, your sister, your dog. Uh, my name's am Emil. I'm 10 years old in fourth grade. Uh, my hobbies are swimming, reading, a lot of reading. Uh, my brother Arlo, he was, he was born with Down Syndrome. I, I was born at least two years after him. Arlo is usually dis kind of disgusting. He lick my face unannounced. Uh, it's a lot of random stuff and he repeats movies over and over again. I'm not sure what else to say about Arlo, but Speaker 1 (06:05): Can I push back on disgusting? Yeah, because I observe it. So I, I do see Arlo lick your face, but um, I also see you kind of like, have fun with them and laugh about it. So can you tell me more, a little bit about how close you and your brother are? Speaker 4 (06:20): Uh, Arlo I, uh, are basically probably the most close siblings. My sister hates me and Arlo, she hates her guts. But, uh, me and Arlo have a lot more fun. We agree on more stuff and because I, I don't know what to say, either he actually has guts or it's because he doesn't really understand movies that well. I get to watch a lot of horror movies and he laughs at me when I get scared. So it's, it's fun with him around with him. Speaker 1 (07:04): I'll just add to that. So Arlo has Down syndrome, but he also has, um, he's immunocompromised, so he has to have infusions at home to boost his, uh, antibodies. He has hearing aids, he has glasses. We see lots of specialists. It requires a lot of travel in a lot of patience from a meal. And in defense of the younger sister Maya, who's not here, Maya is eight and they are, yeah, they don't really take any prisoners, um, and do not put up with much. And uh, it's an interesting dynamic here. I wanna move forward Now, you know, Dean, you touched on something a moment ago and I'm really curious, you know, with you being the oldest in your family and you being four when Penny was born, can you remember how things changed? Can you remember the feeling in the house when, when that was all happening? Speaker 2 (07:55): Yeah, actually I can, she was born like four days before my birthday, so she's the 23rd and I'm the 27th. And so we're right. So I remember walking into the kitchen on like the 23rd and it was our friend from across the street that was there. And I, I remembered that feeling of like, why are you here in the morning? Like, my dad's always here making like pancakes or something. And so he was there and he was like, I get a glass of water. And I was like, wait, what are you doing? And so she was back in the hospital with like jaundice for my birthday. So, uh, yeah, she's been in the hospital a couple times on my birthday actually, which she's been back with jaundice. Um, and what's the lung thing? Um, Speaker 1 (08:37): Pneumonia. Speaker 2 (08:38): Pneumonia, yeah, pneumonia. So that was uh, kind of scary, but yeah, I do remember that. Yeah. Speaker 1 (08:45): And Dean, what's it been like being the oldest brother? Because your brother Toby, you said it so it's like you're each two years apart. What's it like in that dynamic? Do you feel like you're more responsible? Do you feel like you've lost any of your childhood because of the dynamics? I mean, I want you to be really honest here. Speaker 2 (09:05): I think definitely I'm the more responsible one for sure. I don't mind. Um, I kinda like it. It's uh, we still have fun. I still get to enjoy being, you know, a kid. I'm never gonna lose that for sure. But like, I guess me and Toby have always kind of had a, you know, we're the brothers kind of dynamic duo thing and Penny's always had different interests than us, so we certainly made her more. We, we've, she's been, she's done a lot of things that have been modeled after us, I guess. Speaker 1 (09:38): That's really cool. Nea, I'm gonna move on to you and I'm gonna ask this question. I, I wanna say like, I have the perspective of a parent I see in my own house with a meal and Maya like sometimes the expectations that I have to put on them, like the responsibilities because of their older brother's needs are a lot for a younger sibling. And so Mila, do you feel like you have to be put on the back burner when, when your brother's needs are many? Can you talk about that and how that feels and, and what you experience? Speaker 3 (10:09): Yeah. Um, I don't know. My brother needs like, so much like, um, he like, um, he's like a lot to take care of. He's so much work and my parents have to be like with him all the time. So that's kind of hard. Like I don't get a lot of time with them and like, I don't know. Yeah, like I feel like a lot of this stuff is about oie. Speaker 1 (10:39): Mm. Thank you Mila. I know that's a hard question. Um, and I can say as a parent that it's hard for us because we know that it's often not really fair. The amount of attention we have to give to one sibling as opposed to the other. And we wish it could be different. We really do. Mila, tell me if there's one thing in this world that you could change, if you could wave a magic wand, what would you change to make your life easier, your brother's life easier, your family's life? Easier. Speaker 3 (11:10): I would wish it was like, um, easier for him to actually do stuff with other kids cause um, and like get more like help with nurses and stuff cuz we don't have a lot of those and that's kind of hard cuz my parents have to do so much. Speaker 1 (11:28): Yeah, the nursing shortage and the medical staff shortage and that is a constant struggle and it's been made worse from the pandemic Dean, I know, you know, your sister's needs are many and I know because I've been with you that you've had to help monitor her blood sugar and do things. How does that feel for you? Is that a level of stress for you or do you just kind of go with the flow? What's that been like? Speaker 2 (11:51): I always go with the flow. That's kind of my personality. So I mean I, I definitely help Penny a lot. Like it's, it used to be like when she first got diabetes it would be hard for them to leave the house at all like ever. And so I definitely had to learn how to take care of her diabetes and how to, you know, take care of a lot of the issues that she has so that they could, you know, leave and go get groceries while my dad works or something like that. So now my mom feels a lot more free to go to meetings. Uh, there's a lot of stuff that, you know, she'll be able to leave me alone with Penny for sure now, but every time there's kind of a new diagnosis, there's a little bit of a period of learning. Speaker 1 (12:30): Absolutely. You know, Emil, I'm not even sure you remember a lot of the stuff with your brother. I'm gonna bring the mic back down since we're sharing, but I remember a, uh, a Christmas where Arlo had pneumonia and he was hospitalized because of his asthma and issues. Right. How do you feel Arlo's health issues impact your life? Speaker 4 (12:52): Honestly, it's hard. I feel like I've lost a lot of time because of Arlo. I've been, honestly, almost every month I have to go on this. I have to drive with my mom and Arlo and Maya and dad. My dad, uh, two hospitals in Boston, Syracuse we're basically all over the place. I mean, I enjoy being with Arlo and his personality because he has all his disabilities. His personality is different from a lot of people. Speaker 1 (13:39): Emil, you bring up something that I wanna ask actually. You know, you're talking about other people and being different. How different does your life feel Amil than those of your friends? Do you feel like your friends have a very different life because their siblings don't have a disability? Can you talk about what it feels like when you go to other kids' houses? Speaker 4 (14:02): It feels kind of weird to go to my friend's houses, uh, and hang out. But the reason is I go in there, they each, I mean everyone's unique. Every family is unique because of Arlo having a disability and world down syndrome day is so close. My teacher starts talking about it. And one of my friends when I didn't raise my hand and we were talking about down down syndrome, he told me to raise my hand and I don't, I don't blame him. I would've said that to him If his brother or sister, if he had a sister at a disability, I'd tell him to raise his hand too. But here's the thing, I feel, I feel kind of weird when people look at me in my school and think he probably knows everything about Down syndrome. I don't know everything and people kind of expect me to. Speaker 1 (15:00): That's interesting. Like you don't wanna be the expert on your brother's disability. Yeah. Is that what I'm hearing? I'm not a doctor. You're not a doctor. I mean, Mila, do you get that from people sometimes? Can you talk a little bit about how that feels? Speaker 3 (15:14): I don't get that a lot. Um, but sometimes I do. Just like Emil said, when people are like talking about my brother, they're like, oh, hey look, she has a brother with a big disability. Let's ask her about that. She probably knows all about that. Speaker 1 (15:31): That's interesting because there's uh, a very powerful expression in the disability community for people with disabilities, which is nothing about us without us because a lot of times people with disabilities are left out of the conversation. And I think what's interesting hearing from you and Dean, I can't wait to hear what you have to say as well, is that maybe as parents and then also teachers, the adults in your life, rather than asking your sibling or finding a way to communicate with your sibling who has difficulty communicating in a traditional way, they turn to you. I mean, what is, is that what you kind of get Neela? Speaker 3 (16:09): Yeah, sometimes. Speaker 1 (16:11): And is that frustrating? Speaker 3 (16:13): Yeah, , it's Speaker 1 (16:16): Dean, what's been your experience with all these things? Speaker 2 (16:18): Uh, well I know for you guys it's a little bit your, your siblings are older than you. So I, there's no like, I'm the first one in the grade to meet all the teachers. So they don't really, they don't have a previous experience even with, um, even with Toby. Like teachers will call him my name instead of, instead of Toby, they'll be like, oh, it's Dean. And then they'll realize that I'm in the high school already and Toby was in middle school. And so I think a lot of that is just like, it's your older sibling and they've been through that already. Like they've been through the grade, they know the teacher or they know or the grade, the teachers in the grade know them and then you kind of get a little bit of, oh, they must know a lot about this or they have some kind of, you're not a blank slate essentially. Speaker 1 (17:03): I feel like there's a little bit of pain with Mila and a Emil and I get that and I'm really glad you two are opening up and I wanna hear, I don't wanna jump away from that and jump away from things that are uncomfortable. So I wanna, I wanna just see if there's anything you wanna add about your experience that maybe I'm not touching on. Uh, and am Emil, I'm your mom so this might be uncomfortable, but what do you think your biggest frustrations are? Either in general or with your parents Speaker 4 (17:31): In general? Arlo actually only has, I'd say two best friends. And it feels kind of sad to me how he has to deal with some people when they exit the middle school. They look at him funny. Like I, I don't think my mom notices it, but uh, I definitely see people looking at Arlo. It, it makes me feel bad for him and I wish I could just change that. Like people would look at him with smiles and ask to be his friend. But I mean that's how our world is. But anyways, Speaker 1 (18:16): Emil, I'm glad you pointed that out because I see that every day and it breaks my heart and I've seen it for years because you know, all of the siblings we're talking about today have visible disabilities. And so I'm sure every single one of us has experienced those stares. Not of love, but of like curiosity but sometimes of like not coming from a nice place. You know. Dean, you're nodding. Can you share some of what you've experienced? Speaker 2 (18:44): Eighth grade girls are mean dude, eighth grade girls are mean. Um, I know it's really hard for Penny to kind of, she's very friendly and very open so I know she has a couple of very good friends. Um, and you know, they're wonderful people and I know they have a lot of fun together. But, um, I think sometimes parents don't hear everything that's kind of said or like, you know, cuz I'm closer to the age of all the people that Penny hangs out with and I know sometimes it's hard for a parent to kind of understand or to to have the kid be doing what they would normally do next to that. My siblings parent, right. Um, I see more, I feel like I see more than maybe my mom or my dad will. Speaker 1 (19:34): Dean, what do you mean by that? Like, have someone see like what, what are you seeing? Speaker 2 (19:39): Sometimes people think it's funny when Penny gets mad or something and they'll just do like little antagonistic things. Uh, Toby likes antagonizing her so he ends up doing a lot of, you know, he's the, he's a middle child and so , but you know, she, she's used to responding with a ah, don't do that. Um, or something like that. Just, you know, come on Toby. People think it's funny when she gets mad or something and so they'll do antagonistic things that get her in trouble and then it's not really her fault and I just, I don't know. I don't think that's fair. Speaker 1 (20:12): No, it's not. And I wonder, I mean do you share things with your parents or do you filter them to like save them from heartache? Speaker 2 (20:21): I don't think there's much they can do besides do what they're already doing. Like I think if I was gonna change something in the world as maybe to the previous question, it would just have everybody be educated on how stuff like this works and how disabilities, um, are just, you know, they should be accepted and be normal and you know, be part of your life. And so yeah, I wish everybody would just have a better empathy and understanding of people with disabilities. Speaker 1 (20:52): Absolutely. Mila, I mean what sort of things do you see in, in the circles that you're in in fifth grade? Speaker 3 (20:59): Sometimes when I'm out with my brother and my parents people or like when my brother's in school, sometimes people treat him, he's like doesn't know anything and stuff and sometimes like they just think he's not smart and he doesn't really have any friends. Cause people just, yeah, I just feel like everyone thinks he's really weird and they don't get it. Speaker 1 (21:31): Yeah, it's strange isn't it? And it's hard and I think I'm similar ages to all of your parents, right? So when we went to school, inclusion wasn't a thing. So, um, I say this a lot but I think it really drives home the point. Arla was the first person I ever met with Down Syndrome. And so in some ways I expect the looks from adults and, but I'm always surprised when the kids do it because I hope that their peers have been with them their whole lives. But from what you're saying, even though that's happening and they have known Penny and Oliver and Arlo their whole lives, they're still different. Is that in the eyes of their peers, they're still very different. Is that what you're seeing? Speaker 3 (22:21): Yeah, yeah, Speaker 1 (22:23): Yeah. You know, when we talk about name calling and we talk about diversity and equity and inclusion, I was just speaking to someone else yesterday who is a Chinese American and a woman who talks about all of the discrimination that she has faced in her life and said that none of it has stacked up to the ableism. She sees her daughter who also has Down syndrome face and I, I know in my work I see that as well when we talk about diversity and equity and inclusion, disabilities often not included in that. And so I'm curious and Dean, I'm gonna start with you on this one. When we talk about that work that you see that everyone talks about in school, there's a dis there's a free for all in discrimination still when it comes to disability. Do you see that at school? Speaker 2 (23:16): Um, yeah. I mean people really try not to say slurs generally. I mean obviously they should not say slurs. Um, it's derogatory and awful but when it comes to like the R word, people just casually throw it out there. It's a lot more casually used and I feel like it's just because there isn't as much publicity or you know, as much education on the subject. Like when I was in high school, when I was like a freshman, I would hear, especially the seniors, I think a lot of people in my grade, um, are very good about not using the R word. I don't hear it very often. Um, I know my school's smaller and so I know everybody in my grade it's a lot easier to kind of know them all personally. And they all know me pretty well so, you know, I've had conversations with a lot of them about it actually. And I've definitely put a stop to it in my grade. But like when I was a freshman it was hard to, I would not talk to the seniors about them saying it, of course in like the locker room and they're like throwing around horrible slurs and I didn't wanna say anything cuz they're going to, I don't know, gimme a swirly . Speaker 1 (24:24): Wait a minute. So I'm, I'm, I'm 45 now. Dean, I don't know if swirly exist. What's a swirly? Speaker 2 (24:30): Oh gosh. Oh I wasn't gonna really get a swirly but just like facing the toilet, Speaker 1 (24:36): Crush it. Okay, okay. I didn't know that was called a swirly. I mean that happened then, you know, but I don't know if it had a name. Okay, good to know. Thank you for the humor. We need a break for humor. Um, Mila, so I know this is a complex and it was certainly a long-winded question, but you know, as a fifth grader do you see that as well? Do you see like people easily making fun of kids with disabilities but not so much others? Speaker 3 (25:02): Yeah. Um, I only went to school with my brother for one year when he was in fifth grade and I was in kindergarten so I never really saw anything during that time. But when I'm like out with him, um, once when we were at the swim club, some kid walked up and asked him why does he look so weird? What's wrong with him? And so like that type of stuff. So that, that happens a lot cause like people never say really bad things but they can say like mean things. Speaker 1 (25:37): Do you think people even realize how mean it is? Speaker 3 (25:40): Some people do some, I think some are just like asking and others are trying to be me. Speaker 1 (25:48): Yeah. Which is unfortunate because we're all on this together, right? Neela, I wanna have a follow up question for you as a fifth grader, what about what you're learning in school about diversity, equity, inclusion? Do you, when you have those lessons, is disability included in that or not much? Speaker 3 (26:08): No, not really. It's just like black lives but they've never said anything about disabilities and Speaker 1 (26:15): Like And how does that make you feel? Speaker 3 (26:18): Like they have things like diversity but like in the pictures they just show different like black and white people and not people and like wheelchairs or with disabilities. Speaker 1 (26:30): That's interesting because we talk so much about representation mattering and I feel like if we really wanna make a change, we need to see right, everybody. A Emil you know, I know that you learn about diversity, equity, and inclusion in school. Do you feel like you talk about disability much? Speaker 4 (26:50): Uh, basically only one day. One day each year? Uh, it was only starting in third grade and honestly it wa I think it the only reason it happened and the only reason we actually did that was because my mom sent an email. So honestly I'm gonna swear here that it really pisses me off. Basically, if you really want to learn about this, I feel like you're gonna have to learn it out of school. You're gonna have to learn all everything you want to know that you don't learn in school outta school. And I feel like leading up to third grade, we never really talked about disabilities or anything. Speaker 1 (27:42): You know, I wanna move on to something. This has been really dark and I wanna move on to some joy. And so we're gonna kind of slowly transition, but I wonder. Um, and again, like I mentioned before, like I know because I was never around anyone with a disability until I was 33 and that is absolutely sad. And then my life changed because of my son in this beautiful way. It was hard because there was such a learning curve, but Arlo brought this love in my life. Arlo made me wanna have more kids and now I have three Arlo expanded my world. I would literally not be talking to you guys today if it weren't for my son. We wouldn't know each other. But we're connected through this thing that no one ever really hopes to have a disability. But it's not a bad thing, it's just part of the human condition. So I wanna ask this question in a positive way that because of your exposure, because your entire life you have been close to someone with a disability and you always will be and because of understanding it more, how do you feel it impacts your daily life? How do you feel like your sibling and your life experience impacts how you move through this world? Dean, let's start with you. Speaker 2 (29:00): I feel like I'm a lot kinder, um, just to everyone. It's given me a lot of empathy I think. And I see through, through things that we're learning at school maybe. And when you know the teachers like analyze this, what's going on here? And a lot of kids struggle maybe with, I don't know, what's the dynamic between, you know, these two groups of people. And I think you just get a different perspective and it's a lot easier to see uh, and understand people's differences in communication. Especially like penny communicates in non-verbal ways a lot of the time. Um, sometimes it's, you know, just flopping or doing something to get a response and you kind of have to think about why people are doing what they're doing to, you know, figure out you know, what they want. Speaker 1 (29:50): Mila, how's your experience with Oliver kind of shape your worldview? Speaker 3 (29:55): I feel like a lot of things that a lot of people take for granted, like being able to scratch your own itch or pull up your blanket. We like really appreciate those things cuz all he can't do any of that. Like, he can't like control anything he does. So I think we really appreciate those little things and having friends, like we can communicate to them and we can like make friends. He can't do that. So I think that's one of those that's positive. Speaker 1 (30:32): Emil, how is having Arlo shaped your worldview Speaker 4 (30:36): In good ways or bad Speaker 1 (30:37): Ways? In good ways? Speaker 4 (30:39): I'd say this kind of both, but we have to walk to pick Arlo out from school because he can't really, I mean he knows the pathway to to home, but we don't know if he's just gonna run a different direction. The good thing about that is every time I go to see Arlo, every time I go to pick up Arlo, he runs up to me and gives me the biggest hug and smile before my mom Speaker 1 (31:09): Am Emil can I ask a follow up question? Yeah, sure. Don't apologize and I'm sorry for cutting you off. Um, no worries. I, because I get to see you every day. There's this really beautiful dynamic between you and your brother where you are able to anticipate his needs and there's also, even though he's the big brother, I mean Arlo calls you big brother. Does that feel good the way that Arlo looks up to you? Can you, can you describe how it feels to have someone adore you so much? Speaker 4 (31:39): Baby? I'm not, I'm not really sure. I feel it feels kind of weird for my 12 year old brother to tell hi, to call me his little brother, big brother. It feels kind of weird, but it gives me this sense of pride, how Arlo trusts me and how he follows me. It makes me happy. Speaker 1 (32:05): I wanna touch on something because I've heard you all say it Dean, you mentioned Penny has friends, but all of you have mentioned, you know, difficulty with friendships and so I wanna ask, you could recommend to your peers how to cultivate a friendship and how important that is because I, as a parent, I say it with my home own son and it breaks my heart and I, I don't know how to make that happen. I keep trying but you all have this different perspective and you have perspective not just as a sibling but as someone who has people your own age who have, you know, different life experiences and disabilities and whatever. What advice would you give for cultivating friendships both to parents trying to do it, but also to your peers who should be having a friendship with whoever? Speaker 2 (32:54): I think just in order to cultivate a friendship you have to kind of let some stuff go. Uh, you don't have to hold everything they say against them. Nobody's gonna be perfect. Nobody's gonna be the ideal friend as long as they lift you up and you know, don't drag you down, then that's a good friend. Um, that's all you really need in a friendship. I think. Speaker 1 (33:16): Ah, god, a lot of adults need to hear that. Mila. Um, what perspective do you have there? Speaker 3 (33:23): Well, like for being friends with Ali, I think they should have, they should learn like, like how he communicates and be patient with him because it takes a long time for him to communicate with his iPad and like when he blinks yes with his eyes and shakes his head now when he says no and they should just like, I feel like one of the most important things is patience cause he can take a long time to um, communicate with other people. So I think that's probably the most important thing. Speaker 1 (33:59): Yeah, that's interesting you say that ne I do the same thing with my son for his I e P where I'm like, you gotta give him extra time to answer. You just have to allow for that space. Everyone in your life has to amil. What do you, what do you see from both yourself and your peers? How, how can we cultivate friendships? Speaker 4 (34:18): Uh, I agree with both Mila and Dean, but there are some things I would add. I realize that Arlo has this way of communicating. Sometimes she'll just, uh, sometimes he uses sign language, he uses all these different things to communicate and you just have to deal with them. He usually uses this, your middle finger and pointer finger, no ring finger, middle finger and point, uh, ring finger dam, pinky up, uh, index, uh, Speaker 1 (34:57): It's, it's a lot of people know this. Sign a Emil. I'm gonna interrupt and interject to make it easier. It's the American sign language sign for I love you. Speaker 4 (35:04): So it's basically you're doing loser, which is just this, and then you just add your pinky up. Speaker 1 (35:12): Yeah, Speaker 4 (35:14): He usually does that. And then he doesn't really use sign language that much, but it really depends on which, who, who you're talking about. That's how I, that's how I create a friendship with Arlo Mila. That's probably how you create a friendship with uh, Ali and Dean. That's probably how you create a friendship with Penny. You always have different ways because no one's exactly the same. Speaker 1 (35:42): Oh, well there's that spot on too, right? No one is the same. Everyone's different. I'm curious too, since you all are in school, and this is something that parents struggle with and a lot of parents are gonna be listening to this. Okay. Is that our, your siblings? My kids, our kids, they need assistance in school and um, a lot of times that comes with an adult person with them. I think in Oliver's case it's a nurse, it's a teaching assistant. It can be one-to-one. I'm curious how you all feel, not so much as siblings, but as kids that are in school, do you think that creates a barrier to cultivating those friendships? Because there's always an adult around this kid. So I'm, I'm gonna make this a two-parter because the one that adult I think creates a barrier for friendships. But also do you think that adult helps stop bullying? Is it a double edge sword where it's necessary or not necessary? I think this is something that adults struggle with and I would really love the opinion of you all as students. Dean, we're gonna start with you again. Speaker 2 (36:48): I am not in school with Penny in the same, the same building, but I know if the adult that is with her is like good at what they do and knows Penny really well, it's a lot easier to, um, you have to find the right person. I think it's not, it's not a clear answer, but like I'm sure the adult can be a barrier for her. I know Penny really likes a lot of her, you know, aids or teacher assistance or something like that. She, she really likes all those people. But sometimes she'll be like, yeah, I'm gonna invite my friend Ms. Emerson over and you know, it's hard cuz she kind of equates that with, you know, Ms. Emerson is my friend, but she is, but it's hard to explain that the person who's with you all day isn't exactly like, it's more of a professional relationship, uh, kind of side of relationships. So I think there's a little bit of confusion in there too, as well as with uh, you know, maybe a block to talking with other kids. Speaker 1 (37:48): That makes sense. And I know there's a lot of disability rights advocates. They really stress your staff is not your friend. That's not, and that's, it's important to get those friendships happening elsewhere, but it's, it's a really tough thing to do. Mila, I know you and Oliver are very far apart in school, so I, I mean, but you also have other students in your school who need support. I'm curious what you see with Oliver, but what do you also see in your own school with students who need that extra support? Speaker 3 (38:17): In my own school, there's not that many people in my grade with a disability or like in the school that I see a lot. Okay. There's um, one or two, I think they have like autism so it's not as bad, but it's still a big disability and they don't need an adult with them all the time. Like during, like when we have like PE or art or stuff, they can be on their own but sometimes like for class they need an adult with them and they need like special classes. So I think that sometimes can get in the way of us trying to like talk to him or make friends with him and with my brother, um, as like you said, I'm not in school with him, he's in 10th grade , so I don't know that much about him, but having a nurse at home with us, I think like having her around, it's sometimes hard to be close to him cuz she's just always there. I'm like, yeah, Speaker 1 (39:26): Yeah, it's, I I know that's weird. We've had that sort of presence all the time and they kind of become part of the family, but they're kind of not and it can be really uncomfortable, can't it? Speaker 3 (39:36): Yeah. Speaker 1 (39:37): Yeah. Speaker 3 (39:39): So Speaker 1 (39:40): A Emil talked about earlier needing to travel a lot and needing to do things because of siblings. And I know that our lives are different because of that, but also I know that there are things that are better because of it. So even though the long drives and the car stink because Arlo has to go to Boston, uh, our family gets to go to Boston and so even though it's for doctor's appointments, we make a vacation out of it and we find a hotel with a swimming pool and we went to Salem and saw the witch stuff and we see the ocean and we make the best of these things because of him. And I know in our family, because Arlo's the oldest, but he has so many developmental delays, it lends to him wanting to watch movies with his eight year old sister that they both like and being able to do things that are younger that most 12 year olds would be like, no, Arlo's cool with. So there's some silver linings there in our family and when I get toil he might disagree, but I'm curious what silver linings you have from the tough stuff. Speaker 2 (40:44): I think Silver linings for sure. Like we went to uh, New Zealand with the, our whole family three ish years ago, right before the pandemic and Penny doesn't like to walk a lot. Um, so she would just flop and when she flops we would always kind of take a second to look around and I think we got a much better picture of where we were. And I dunno, it's interesting what you see when you don't just walk right through quickly and you kind of stay there a while and wait for the flop to be over. So just a lot of stuff she does, I think gives me a different perspective on what we're doing at the time. Speaker 1 (41:24): That's interesting Dean. And it's probably a little different from you being older because it's the reverse of what we've experienced with Arlo. You've probably had to compromise a lot in your activities. Have you felt that? Speaker 2 (41:38): I am, uh, Troy in high school musical? Uh, so when we, when we sing, I am always, I'm always Troy in high school musical. I'm, I play a lot of the Disney princesses too. Uh, I'm an actor, so yeah, I compromise. Um, but it's fun and I make it fun and I have fun anyway, so Speaker 1 (41:58): That's nice. Mila, what about you? Are there some silver linings with, uh, Ollie? Speaker 3 (42:03): Um, we can't really travel because we can't like get on a plane or go on a really long car ride. That's all hard. But when my parents have to take all the way down to Rochester, Syracuse for an appointment, I usually get to end up, um, spending more time like at a friend's house or with my aunt or cousins that's like one silver lining. I get to spend more time with like other family or friends when my brother's away. Speaker 1 (42:37): Oh, that's nice. That's probably a bond you wouldn't normally have. That's awesome. Emil. What silver linings do you see with your brother? Speaker 4 (42:46): Silver Linings with Arlo? Is that basically the reverse from a Neela is we get to travel, we get to travel a lot and sure we have a lot of arguments, but usually when we get there we have a lot of fun. We get to visit new places and I can't remember if it was a business trip with my dad or it was a doctor's appointment for my brother, but we went to New York one time and it was so fun. Uh, we got to go into the Harry Potter shop. There were, it was, it's fun with Arlo around, but another silver lining is, and I think I've already mentioned this, but Arlo probably less of a fear than most 12 year olds, honestly. I mean, because of Arlo getting into more scary stuff, we, we've started watching Ray Dar war movies, uh, well actually only one I believe, but Arlo doesn't really care, but he loves, there are some certain songs, I don't know if you can hear it right now, but he is listening to Thriller Michael Jackson thriller and those are one of the songs he basically repeats and he plays super loud. (44:12): It's very annoying, but Arlo usually listens if he wants to, and I agree with him. He usually, uh, turns it down a little. Me and Arlo have this arrangement and here's another silver lining where he gets listen to music. I get to play video games, games and I have a, probably a longer curfew than most, most kids my age, uh, especially on weekends. I've pulled in all nighter at least three times in my life, which is honestly a lot for me. But, uh, Arlo agrees with a lot of stuff. Arlo has a lot of silver linings and it would take me at least an hour to name them. Speaker 1 (44:54): The three of you just keep expressing so much love to your sibling and it just, it brings joy to my heart and it's making me wanna ask a question that a lot of parents have, but they're afraid to ask. And honestly, it was a question I had after my son was born, which is, should I have another child? I know that this beautiful baby I have has a lot of needs. And someone told my husband and I early on like how wonderful it was to see big families surrounding this child that had a disability. And that brought me a lot of comfort. And I can say hands down, the best thing I ever did was have a meal here and my daughter and Arlo, I wouldn't change anything. But parents have this question and I mean, what would you as a sibling say for parents who are wondering what is your life like? What would you like to share about that? If they were to ask you your opinion on it, what would you say? At the same time, you do not have to answer this question. Absolutely not. It is a really tough question, but you all are wise and mature beyond your years and that's the only reason I feel like it's okay to ask you. So Dean, being that you're the oldest, it would be wonderful if we could start with you. Speaker 2 (46:22): I think my life is better because of Penny really. I mean, I don't know, I feel like I'd be much worse, just not a, as educated and kind as I, as I am. I know it's changed my parents too and the way that they've raised me and that's, that's a huge influence when you're growing up. Yeah, I think, I think I'm a better person cuz of Penny. So if you were going to, if you didn't want to have another kid or you don't think it's gonna be fair to your kid, I think you're gonna raise them better. You wanna make the world better for people with disabilities. Siblings are, I think, the best suited to do that. Even if they're not gonna go into something directly related, they'll do something that's like, they'll keep that in mind when they're doing whatever job they come across. And I think that'll help everything be inclusive and everyone be inclusive. Speaker 1 (47:18): Mila, is this something you even wanna answer? Um, if you do, go for it. If not, you can say no, Speaker 4 (47:25): I don know. Speaker 1 (47:28): It's okay. You can about it. Okay. Uh, Neil, do you remember the question? Speaker 4 (47:33): Not exactly. Can you repeat it? Speaker 1 (47:35): So if, if there's a parent who has a child with a disability already and is on the fence about whether to have another kid cause they're not sure if it's gonna be fair or, you know, what's their life gonna be like? Here you are, you have two siblings, what, what would you tell that parent looking for advice? Speaker 4 (47:55): Uh, I'd tell that parent, honestly, it's up to you, but I feel like I honestly have more privileges than Arlo. I, I get to do a lot because of Arlo and because he's well different from most people. I wanna say, uh, Arlow gets to do a lot. Maya gets to do a lot. I mean, I'd say you should get another kid and you should see, you should see what that child is going to do and how that child is what's gonna happen because it's all up to you. Speaker 1 (48:38): So Neil, if I may, I, it sounds like what you're saying is if you don't wanna have another kid, don't if you do, do because it's not that big of a deal. Is that kind of Speaker 4 (48:48): Yeah, that's a quick summary. Speaker 1 (48:50): Okay. I wanna make sure I don't mince your words. Neela, we're gonna move on to the last question. And you've been so patient, I'm gonna see though first, do you wanna answer that question or no, still? No, that's cool. Uh, the last question, I want it to be happy. Okay. I wanna know what your wishes, hopes, and dreams are for not only your future but for your siblings future. Speaker 2 (49:14): Uh, I mean right now I'm, you know, embroiled and finding colleges and stuff, so, uh, I'm looking at kind of what I wanna do, but for Penny, I think the biggest goal is just to have her be independent and have her be able to like, function on her own and not need as much support. Um, being able to just do things for herself and be self-sufficient. I think she would really like that. She always talks about, I dunno, she wants to be a fashion designer, so we'll see how that goes. You know, we always encourage the things that she wants to do. Like, I think, um, my girlfriend's gonna give her sewing lessons and see how that goes. There's just a lot of fun stuff that, you know, we just encourage whatever she thinks is fun and, and hopefully one day she'll be able to do something with that and do it on her own. Speaker 1 (50:06): I love it. Neela, are you ready for this one? Speaker 3 (50:09): Um, mostly for like Ali's future, um, I hope that he gets more respect and more like help to live a happier life and that like, if he goes to a college, he can do like math and algebra. He really likes doing that stuff. He's really smart and I don't have to like dedicate my whole life to just helping him. Speaker 1 (50:36): Mila, do you feel like that might be something that you might have to do? Speaker 3 (50:41): I mean, I know I'm gonna have to like help him a lot, but I don't want to do that like my whole life Speaker 1 (50:51): Yeah, I understand that and I think that, I think that a lot of kids feel that. Um, and I can't speak for other parents, but I can tell you that I know personally for myself and for so many others, that's not what we want for our, for our children. And I know that in our, in our situation, we are setting up everything we can. So Arlo has his own life and his siblings that's, he is not his sibling's responsibility? Speaker 3 (51:21): Yeah, like I was never asked to, but I feel like I'm going to like, I I should, but I don't wanna do that like all the time. Speaker 1 (51:31): Yeah, I think that's a real concern for a lot of, a lot of siblings and it's legitimate because when your parents are gone, you know? Yeah, I'm sure that weighs on you. Um, thankfully that's a long way from now. Emil, what about you kiddo wishes, hopes and dreams for your future and your brothers? Speaker 4 (51:55): Honestly, for Arlo, I hope that he becomes an, a musician. I'm not sure if he loves, uh, to play the saxophone or not, but I've never really heard, heard him practice, but I feel like that's a wish and hope for him. I believe I googled this one time, but I it's, I think it's one outta five, uh, people with a disability get married, I think, I'm not sure. I don't remember it, but I believe I saw that on Google somewhere. I hope Arlo becomes a famous saxophonist and I don't really have any wishes, hopes and dreams for myself. Speaker 1 (52:46): Will I have plenty for you? Dean am Emil Neela, thank you so much and thank you listeners for joining us. We're just getting started and cannot wait to bring you more. Please rate, review and share and tell us what you wanna hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon. Speaker 4 (53:20): Listen to the next episode, please bye. This time for real.  

Summer camp sign ups are well underway across the country. Parents and caregivers are scrambling to secure spots so they can work while their children make new friends, learn new skills, and have fun.    It's not so simple for the estimated 17% of children ages 3 through 17 who have one or more developmental disabilities. If a child needs extra support or even the smallest modifications for activities and access, the options become extremely limited and, in some cases, obsolete.    Jessye Cohen-Filipic and Cindy Lui are mothers, advocates, and professionals who have ran into road blocks both getting into and keeping their children in summer camps. They shared details of their struggles with The Odyssey.    Even better - they shared strategies for navigating systems, how advocates can support one another, what needs to be done to create meaningful change, and their hopes for the future.    Listen in and share your summer camp struggles and solutions with us. Perhaps there's a follow up episode in our future ...    The Odyssey: Parenting. Caregiving. Disability.    Need emotional or informational support from a parent who's been through situations similar to your own? The Center for Family Involvement can help. https://centerforfamilyinvolvementblog.org/family-to-family-network/   Check out Cindy Lui's TedX talk!  https://www.youtube.com/watch?v=mr_Fff6ZiXI   Inclusive Camp mentioned in episode: Melwood's Camp Accomplish https://melwood.org/recreation-programs/camp/camp-accomplish/         TRANSCRIPT: Speaker 1 (00:00:07): Welcome to the Odyssey Parenting Caregiving Disability. I'm Erin Croyle, the creator and host. (00:00:19): The Odyssey Podcast explores the unique journey we're sent on when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down Syndrome. Even though everyone knows what Down Syndrome is, we still don't know that much about it. And as a new parent, I knew absolutely nothing. My journey weaved its way here, working with the Center for Family Involvement at vcu U'S Partnership for people with disabilities. We provide families with emotional and informational support. This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving, and disability is, while calling out the inequities that our children face, living in a world that still fails to understand and embrace disability. Today we're talking summer camp, that rite of passage, so many kids remember fondly that chance to get away from home and be with your peers, either for the day or overnight. (00:01:22): For many adults, though, summer camp is a necessity. School is out, and we need childcare for many, many weeks because we have to work and pay the bills. Even if families are lucky enough to have someone at home. Summer is this seemingly endless stretch of unconstructed time you have to fill. And even the most patient and seasoned child whisperer needs a break from time to time. The offerings for summer programming in most areas are many, for many children with disabilities, though it's Slim Pickens with sometimes no options, it's a heartbreaking reality that many parents and caregivers face and something both of today's guests understand because they live it too. And so do I. So we're going to get into this. Joining me is mother advocate and psychologist, Jessye Cohen, philippic and mother advocate and social entrepreneur, Cindy Lui. Cindy and Jessye, I'm so happy you're both here. We've talked about this over the years, and now we're able to really kind of tear it apart. I'd like for each of you to share some of the biggest challenges that you face. Uh, Cindy, can we start with you? Speaker 2 (00:02:36): Yeah. Hi everyone. Thanks for having me on. Um, I have to apologize in advance. I'm getting over a little cold zone if I sound a little stuffy. That's what it is. I am also part of the Down Syndrome community, and I have, uh, two children. You know, I think I begin the advocacy advocating for my, my daughter who has Down Syndrome, but recognizing that if she doesn't have equal access and equitable opportunities, it also affects my other child, my son. So specifically to summer camps. Your intro is so, it's so touching and moving, and it's also so painful to recognize that these, the summertime joys are not inclusive or not by design inclusive of, of kids with disabilities. And when it comes to education, for example, we talk about multi-tiered systems of support. It's really not that hard to implement that for summer camp, but I think many camp organizers assume that just allowing a parent to bring an aid is inclusion. And that really doesn't, doesn't really shift the culture or the mindset of the campers of the community integration approach, the holistic child approach. I've honestly decided not to do summer camps anymore. Um, because between the private ones and what's offered at Parks and rec inclusion is still the burden of the parent, and that's really hard. Speaker 1 (00:04:10): Yeah. And you know, we talk about burden here often, and I always wanna clarify, and you said it perfectly, but the burden is never the child. The burden is the societal structures that we're up against. Jessye, how about you? Speaker 3 (00:04:25): Yeah, thanks for having me. And you know, I know we're here to talk about camps and, and I will work hard to focus on that. But as I've said to you many times, right, this blurs, the lines are blurred between all forms of childcare and all forms of recreation. My daughter is nine and a half, and we had our first foray into summer camp when she was five. Again, out of necessity, she was in summer school. And summer school ended at, I think, noon at that point. And we needed something for the afternoons and literally fell apart on day one at the only option we had available to us. And, um, yeah, so, so echoing what Cindy said. So I don't find that there's even sometimes an opportunity for inclusion that, that I bear the burden of, right? So I find some places aren't even open to my bringing an aid, and that's if I can find an aid and pay an aid and re you know, retain someone to work. (00:05:20): But, um, I also have been really struck recently by what I I see as performative inclusion. So camps that specifically talk about being inclusive, and then I listen to their spiel and it says, we're really designed for the kids with a mild classification, or we're a camp for kids with autism who don't have any difficulty regulating their emotions. That speaks volumes to me about what they're looking for and about the ableism inherent in their criteria. And the other piece, I know we'll get into this, um, you know, my, my kid really wants friends. She, she near needs socialization. She needs socialization outside of the academic environment, which is challenging for her. Um, she's desperate to do it, but what I'm finding is as she gets a little bit older, there are camps that are inclusive if I'm willing to travel and pay a lot of money. But they're overnight camps. And I don't know that my child will ever go to an overnight camp, but she certainly can't go to overnight camp before she's had an opportunity to do a day camp. So I'm grateful that those places exist, , but I can't possibly make the leap from zero summer recreation to sending my child to another state overnight. It has been a, a perpetually frustrating experience. Speaker 1 (00:06:43): And Jessye, you you point something out that I, I always think is interesting because there are in some places, camps specifically designed for kids with disabilities and sometimes more significant disabilities. I know that I'm personally, like I have a really hard time with that because that is still segregation. And whenever you design special programming, you're setting everyone up to continue that on, not just the expectations for our own children with disabilities who think like they only belong with kids, quote unquote like them, right? But their non-disabled peers are not then exposed to what people are like outside of the vacuum they're put in too. And if we keep perpetuating that, and if we keep doing this, then what is gonna happen to our workforce? How will we fully include people with disabilities if we start segregating them in summer camp and like we do in our schools with, you know, self-contained classrooms? (00:07:42): But it's more than that part. I, I'm, I imagine you, but I'm not sure if our listeners have ever listened to or read N p r Reporter Joe Shapiro's report back from 2018 about people with disabilities and abuse. It touched on the sexual assault epidemic that no one talks about. I'll put the link in the description for this podcast, but everyone has to read this. And one thing that it pointed out is that people with intellectual disabilities are the victims of sexual assault at a rate seven times higher than those without disabilities. And I remember early on in my son's life, he's 12 now, my oldest has down syndrome. I have two younger children who are both non-disabled. So early on in my son's life, I was going to all these trainings and conferences, and I remember one of the speakers talking about, um, sexual abuse in our kids. (00:08:30): And he said, I want you to think about, not if this happens to my child, but when, and so when I think about summer camps or, you know, special programs designed for children with intellectual and developmental disabilities, I just, you know, I know that this might not be fair, but I think of them as sort of magnets for predators because people are aware that children with limited traditional expressive language are often an easy target With all of that, I'm curious how both of you feel about camps designed specifically for kids, um, with disabilities. Cindy, what are your thoughts? Speaker 2 (00:09:08): Um, first I wanna go crawl into a ball and, and, uh, have a cocktail because it is, uh, it is something that keeps me up at night. And then my advocacy work related to public safety and even education through K-12 on sex ed. It's an area that I, that that article that you pointed to specifically sits with me every day. So it, it's interesting too, because I can't help but mark the time in our, in our history where Judy Human died on March 4th and her whole revolution, the civil rights movement started with a camp on all of those individuals started going to a camp that was primarily for disabled individuals. But I think the difference is that it was also run and supported by individuals with disabilities cut to modern day. It certainly is a challenge because, you know, I always think of our kids having, having a long ramp of education and learning, and that involves socialization as well, understanding peers, understanding the sophisticated dance of peer relations, understanding their own emotions, and they are human beings and have natural sexual desires as well. (00:10:30): But understanding what informed consent means, which could be a challenge for the non-disabled individual. Mm-hmm. , I don't have any solutions, but I, I, I guess I, it is, it is a concern. And in that case, it sort of boils to access and privilege. If you have the privilege to be able to afford a trusted support person, caregiver behavioralist aid to be with your child, that is a financial privilege. But it also, the other side of it is access. Would there be a camp that is accessible even with all those systems of support? And again, the financial burden is on the parent. Um, you know, and Jessye mentioned something about performative inclusion, , which kind of got me on this, this summer camp thing. Um, and if I can just share a quick story of my experience of pre Covid summer camp, please. It was, it was a private camp that I went to, and within the hour they called me and said, you need to come pick her up. (00:11:36): And I said, why? Well, she's not going with other campers. Okay, well, what have you tried? Is it a physical inability because could we put her in a, in a trolley that other kids like this is the part of inclusion that's really not that hard. I she physically not able to keep up because she's not running yet, but could she be in a, a scooter that other kids would love to push and take turns sitting in? That would be inclusive solution. So I give that camp at least credit for trying. The second camp that I went to or was looking into to Jessye's point about performative inclusion, made all these statements on their website about social justice and the kind of training and d e I and, and I'm sure everyone in the room listing, like noticing when it's d e I work that doesn't include individuals with disability. (00:12:30): It's not d e I work mm-hmm. . And so I actually called and I said, I'm slow to share that my daughter has Down Syndrome, because that instantly closes doors to conversations. I said, you know, she does have a disability, but I wanna talk about how we can support blah blah. Three phone calls. The last one was returned and the, the camp owner said, we can't support her needs. And so he didn't even have the courage to talk to me directly. He went through his admin and I said, how does he know what her needs are? He's never met her, he's never met me. We've never been on campus. And when they said that, I said, great, can you put that in writing and send that to me? And when people don't wanna put it in writing, they know that they've done something wrong. Mm-hmm. (00:13:21): , and I'm not a litigious person, but thank God. And you know, the ADA A was passed, and we're talking about Judy Human a little bit. I filed a complaint with the Department of Justice. The Department of Justice felt that I had a viable complaint and offered to mediate, but it depended on the camp if they wanted to engage in that mediation. And they refused. And here in the states, the, the American Camping Association has put out guidance that there is no such thing as grandfathered in from the a away from the a d a, there's no grandfather clauses. So you do have to be compliant and work and discuss reasonable accommodations. But that clearly didn't happen because of ableism and bias. It's not a kind of camp that I would wanna send my child to when it truly is performative. And they're talking about how well they train, but they're not including disability in that conversation, or they're not even willing to engage in a parent who's willing to be collaborative. Speaker 1 (00:14:25): Jeff. I think that's more common than we realize. And I know that Jessye and I have talked about that, in fact. So Jessye, I'm not like I have a question posed, but we have this conversation, so I want you to go whatever direction you're feeling now and what you say next. Speaker 3 (00:14:41): So I, I realize there's one important piece of my personal history that I think I should share. And it leads to my next comment, which is that I'm ambivalent about, about specialized, specific camps. Um, I agree with everything that has been said, but I dream of the day when my kid could go to a camp where she'd meet other kids like her in some ways, , and they have a specially trained staff to kind of get her, um, if I think about it from a, a neuro divergent lens, like I would love that. But, but the important piece of my history that I'll share, um, so I was someone for whom summer camp was not a great personal experience. Day camp was fine. Overnight camp was a long history in my family, and I wasn't great for me. But I spent the very first summer of my life, uh, living in a closet of a cabin in, um, upstate New York. (00:15:33): My parents as, um, I guess during my, my parents' graduate schooling. And after they started a camp specifically for kids in this, uh, metropolitan area, who essentially kids who were classified, this was the early mid seventies classified as emotionally disturbed. We, of course, have luckily moved on from a lot of that, but kids with significant behavioral challenges who also were at risk of removal from their families and had involvement with various service agencies. So my parents, along with their friends who were these eager graduate students in psychology, started this program so kids, those kids could get a camp experience that was nurturing and positive and loving. So I grew up along with a couple of peers, like literally sleeping on a shelf in a closet so our parents could run this camp. The fascinating thing that they did at the time was that they then provided wraparound services through the course of the year. (00:16:30): It was really a very early model in sort of community psychology, which wasn't happening. And so they, they said, that's great. We can get these kids out to camp, but what's gonna happen when they go back to their schools and their families without support? And so they started providing some wraparound case management and support services and, and again, really sort of informed the future of, of good community psychology work. And my parents moved away from the area, but there are people, my parents' peers who are, you know, in their seventies who are still in touch with campers from that program 40 something years later. So that, for me was a very early model of a specialized camp that really was there to meet the individualized needs. And for those kids at the time, all of their other experiences were, were integrated. There weren't any other options. (00:17:20): And so it felt like a, a haven. So I guess in some ways I have this vision that someday my, my kid could have that haven could have a place. Um, but you're absolutely right that segregation is not inclusion. And you know, Cindy, when you were telling that story, very different experience for different reasons, but the same thing an hour into camp, you know, you gotta take your kid. It was so very clear to me that they just understood nothing about my child. But I've been told similar things like all, you know, and, and unfortunately, sometimes I don't play my cards close to my chest. And I'll say, you know, okay, my daughter has an autism diagnosis, and I'll hear immediately, oh, we can't meet her needs. Well, you, again, you don't know what her needs are. First of all, you have literally just heard a diagnostic category. (00:18:06): But even that diagnostic category is a spectrum. There's a reason we talk about it as a spectrum, but you know nothing about my kid. Don't tell me that she needs to be accompanied by an adult at all times in the pool. She taught herself to swim when she was three. You know, or tell me that, oh, well, if the aide that I'm ready to send with her isn't there, she can't come on that day, that is not inclusion. Or, oh, we won't have room on the bus for an additional person for the field trip. So she might not be able to go on the field trips unless she's transported separately. These are inexcusable conversations, particularly in this day and age. And the financial burden is real. Erin, you and I have talked about this. My current frustration is with extreme privilege that comes with my professional background, my education, my advocacy, and the resources available. I actually have access to a lot of money to pay for these services. And I can't find anyone to take my money because I can't find a staff person, or I can't find a program. And again, I say that I am extremely fortunate that I have this privilege, but it's a privilege that I can't access because I cannot find ways to give people, Speaker 2 (00:19:25): If I can interject. It often helps non-disabled people to really understand the level of bigotry and discrimination ableism when we just take out, my daughter has autism, down syndrome, cerebral palsy, you name the disability and you replace it with, my daughter is black, my daughter is, um, Chinese. And the example that, and the experiences that we both all have lived, the three of us. And I'm sure to the listeners who can relate that if you replace any disability with any ethnicity, the bigotry becomes so clear because what the quest, the question they should respond with when we share is, how can we support your child? Or let's discuss how and if we can support your child, you know, let's meet, let's look at the space. Let's see, let's look at the calendar of what we have planned. You know, these things are not difficult. Um, I think it's, it's really a closed mindset. And I know that a lot of summer camps are run by small businesses, and I like to support small businesses. But if you're out there parading yourself as a social justice, restorative justice, d e i , and the response is side unseen, we can't support your child, well, then you're also a bigot. There's no way around it. Speaker 1 (00:21:08): I, um, Cindy, I've always loved that you just don't hold back. And you're right, it is so hard. And disability is not included in most d e I work. When we say inclusion as a society, we don't often mean disability. I think sometimes those of us who do have children with disabilities or who are in the disability world, we, we feel like we are included in inclusion because we talk about it so much. But when you go outside the bubble that we live in, it's not really there. And I think it's funny too, that the three of us are here, and all three of us have experienced sending our child to camp and getting a call within hours. I remember getting my son set up for a science camp, contacting them, doing all the things, them assuring me everything was fine. And two hours later, he basically got kicked out of camp. (00:22:06): There's just so much here because when we're talking about, you know, the financial burdens, you know, even if you have the money, like you said, Jessye, to pay for help, you often cannot find people. And that's why I wish that camps would do due diligence to look to support people, especially when you have young people who want to work and want to learn and are probably more open-minded. You know, Cindy, you brought up, uh, Judy Human earlier, who is just an icon. And I wanna bring up, um, the late great David Berger, and I'm not, I don't think as many people have heard of him, but he was an amazing advocate. He spoke to individuals with disabilities about sexual autonomy, and he would speak to, you know, their parents about how your child is a sexual being. You need to accept that and learn that. But he was also just a fierce advocate in, in general. And he said something, um, once, and I'm paraphrasing this, but he said, never ask permission, because asking permission implies that no is an acceptable answer. And he's so right. But at the same time, like everything that we've experienced, it's not safe for us not to mm-hmm. , it's not safe for our child, for us to just put them in something and go ahead. I've Speaker 3 (00:23:27): Experiment. No, I've experimented with that. I tried that. It failed miserably. You know, there was a time in my life where I thought, screw them. I'm not gonna tell them, you know, why should no other kid comes in, right? No other parent of a kid who's identified without a disability, who's not identified with a disability. Oh, you know, Joey has a tantrum if you ask him to take a nap or he eats, you know, only brown foods because whatever. Like, and so I tried, I tried it several times and it hurt my kid. Like you said, it's not safe. Speaker 2 (00:24:02): And I, I, I try it as a conversation is honestly a litmus test to me mm-hmm. to see where they really are on their knowledge base of inclusion. And, and listen, I'm still learning about what that looks like and what supports look like, and I'm still learning about my children, both of them. But for me, the, if the conversation goes, whoa, and you feel the walls come up, then for me, I know, okay, that it's not a safe place for my kid. And this person doesn't even have the mindset and, and mindset for me is at least 70% of the challenge. If the mindset is there, the openness is there, the willingness is there, the seeing the child is there, we might be able to work it out. And it's a lot of work, on the parent's part, but it's willing, I'm willing to do that for the benefit of not just my children, but to, I can't remember who said it, or to the all of society, the community that my kids are gonna be in. (00:25:10): And I have so much faith in this next generation, the youth generation, the leaders, I think there's so much more awareness and understanding and appreciation. I think for right or wrong, even though the inclusion levels aren't where I want them to be, I think that they have been more exposed to disabled individuals in their daily life, their school than I ever was growing up. And so I have a lot of faith that we can work and train, and they are so good at just seeing the kid and trying to have fun. And that's really what summertime and summer camp can be. I also like that approach of, you know, it kind of depends on what it is, but the risk of not taking no for an answer is a pretty high risk when it comes to children who, um, have trouble or challenges communicating, need more time to process to understand. I love that quote though, Erin. It's really inspiring because , there's so many different ways, right? Like Speaker 1 (00:26:18): It's spot on. And I think that because we're in this situation talking about our children, I think that quote more applies to us, um mm-hmm. and how we do it. But I mean, Cindy just mentioned this, and Jessye, I mean, we talked about this, here we are, we're three women who are smart. And before kids probably had a total different life, right? Mm-hmm. . And I sometimes wonder, and again, I like all three of my kids are the best thing that ever happened to me. And my son having Down syndrome has made me worlds better of a better person. So I'm not saying I wanna take that away, but I do wonder if it weren't for all the work that came along with busting through the barriers that society has put up, what my life would be like now, I, I would like to touch on like, how can we change it and what can we do to make it better Now for people like us who are really just getting by, Jessye, what do you think? Speaker 3 (00:27:20): Of course, you're gonna start with me on that one, the tough one. . Um, thank you Eric . So it all comes back to, to advocacy for me at this point, we've talked about the, not, you know, the not-for-profits and the, but for me it's starting with places like Parks and Rec and city organizations, because I think they are the most compliance is required, right? From those places. I have one option locally, and they have very limited resources, and I really value the person who oversees the program. And so two years we registered, and two years those both years, that person contacted me and said, here's why I don't think it's a great fit this summer for your kid. It wasn't ableism, it really was, I'm looking out for your kid. Here are the structural issues, like an acknowledgement that there were structural and staffing issues that were gonna make it not a good place. (00:28:13): And so we're, we're crossing our fingers to try it again. But this year there's so many people interested and their resources haven't expanded that they're talking about having to prioritize people who sign up for a whole summer. Well, guess what, if I sign up for a whole summer and it bombs on day one, what am I supposed to do for my whole summer? Two, they're talking about maybe only being able to send people for half days. Same thing. I can't do my job or live my life with half day camp options so that, you know, those, those are larger systemic and structural issues. But I do think the same way that we demand, and I don't wanna pit this as disability versus some other dimension of diversity and inclusion, right? I think all of it needs to be, and, and what we're not even talking about so far is the additional burdens that, that you talk about if you're talking about kids of color with disabilities, right? (00:29:05): And that, that, that's even more, but that we say, okay, this is a community with X number of kids with disabilities in the school system. The only option cannot be summer school. What are you gonna do? And either the district needs to pony something up, or the town or the city, or whatever it is. And again, maybe it's me doing that on behalf of people who don't have the time and energy to do that. It's different from saying, you have to take my kid to this particular program right now. And more, it's unacceptable to have communities with significant numbers of people with disabilities not being served any recreation setting and asking people to do better. Speaker 1 (00:29:46): Cindy, go ahead. Speaker 2 (00:29:48): I like what you said, Jessye. Um, I will say from a personal point of view, my sister said this to me. She's like, I feel like every developmental stage your daughter is in, and I, I won't, obviously she said her name, but I won't say her name. Um, it's part of a system that you have to change. It's one more thing you have to change. It's like, yeah, you're not wrong. every grade she's in, we've got, there's something we had, she hits, you know, third, fourth grade, fifth grade, sixth grade, whatever, sex ed, you gotta change that access to the gen ed, blah, blah, blah, blah, blah. And then you go to the community and it's exhausting. And covid, I, I think we, we have to talk about the impact, the ongoing long tail impact of covid on us as advocates on us as parents, on our kids, and their access, not only necessarily regression, but loss of skills, be it academic and or social. (00:30:48): So there's a lot of things that can be really overwhelming, but I think we can all take a bite of this giant elephant in this way. I really love, Jessye, that you talked about Parks and Rec, because as tax paying constituents, that seems like a very, very, very reasonable, relatively easy way to initiate conversation and demand for change. So get your two or three minute public speaking comment. Write letters to at least where we live. There's a board that is elected that oversees Parks and Rec. There's also usually a foundational fundraising that supports the things that tax doesn't support. So understand you're a parks and rec municipality because as you, as you said, Jessye, there are, there are compliance things that they have to participate in. And where we are, there's a whole 30 pages of summer activities and then 10 pages for therapeutic rec. (00:31:58): I will say the therapeutic rec is accessible and supportive, and Manny families love it. And I would love the conversation to move to how can we, this is where our community is. How can we integrate as a step towards inclusion, right? So why not the summer training for, for summer camp counselors, you get funding to hire two, three more adults, two, three more kids, college kids, get someone to train them on top 10 ways to be inclusive, top 10 ways to see ability, not disability, top 10 ways to make summer camp engaging. So I think starting with your municipality is a good way. And then coalition building, it really doesn't take more than one plus one as a team, right? . So if you get plus two, you got three people that can speak in, right? Unfortunately, I think it is going to be, uh, an initiative locally. (00:33:00): And then of course there's, there's guidance, there's associations, at least in the state's, camp associations that have put out guidance, legal guidance. And if you have a camp that's privately run that at least show some mindset towards that, I think maybe reach out and talk about ways that can be collaborative, easy ways that are not expensive for them, but that really make it more open and inclusive. And hey, you get a larger community and consumer group because let's remember, as Jessye said, we've got money to spend, we need a place to spend it. So those two things maybe, but honestly, I'm tired. I'm tired of educating the experts that are supposed to be good at this. And some days you just wanna take care of your kid. Speaker 1 (00:33:51): I think that's a tough one for all of us. You're like thrust into this when your child's born and right away you go into early intervention and you go into the therapies and all the things, and there's this big learning curve. If you're a parent who, who doesn't have a disability or doesn't have a relative, like said this before, but my son was the first person I ever met with Down Syndrome. And so yeah, he's 12 and I'm tired, and Cindy, I'm right there with you, with, you know, doing the systems level change and going to speak. And I took it to the next level and I started getting on boards and, you know, running for things because I realized that speaking there wasn't enough to really be a part of the change. You have to be a voice on the board, but it's exhausting. And it's even more exhausting when you have a kid at home with a disability who has more needs, who has more medical appointments. I don't know about you, but I, it's become clear to me that the only time I get out of my house is when I'm gonna go to a board, a board meeting. I like, don't go on a date night, I leave my kids at home to go to work for free. Speaker 2 (00:35:05): Right? Speaker 1 (00:35:06): So how do we rectify that? Like how do we better mobilize the efforts we're doing? Do you have any ideas? Speaker 2 (00:35:14): Nope. , um, well first of all, thank you for putting yourself out there to run for elected office. It's so, so, so important. I think speaking from a parent point of view, you gotta take care of yourself so that you can take care of others. And that's really hard, I think as women, particularly women who also have professional system change goals, a aspirations, et cetera. For me personally, I think everyone in this room is similar. You need something that stimulates your mind too. But it is hard. And I, I think if you need to take a pause, then do, because hopefully it's a choir out there that someone else will be inspired. And sometimes if you're not in the room, someone else like, oh, okay, it's on me now. Right? All I can sort of recommend is take a break if you need to, but always come back and I think when you are at the table, be willing to mentor and train. Sometimes, and based on my experience, it can be a competitive viewpoint of disability as though it's a scarcity model. Like, no, there's a lot of disabled people. We all can have a moment at the mic. We all have a moment at the, but how do you build that bench strike? So it's not you. You're right. I don't know what a date night is. I'm just, I know I say it to my husband, I love you more than sleep. So you go ahead, you sleep . (00:36:49): I'll take the morning shift. . Speaker 1 (00:36:51): Jessie, how about you? I mean, how exhausted are you? What are you doing to like create change but also survive? Speaker 3 (00:36:59): Oh, good question. Well, as you know, I also took on a local leadership position, not elected as the president of the special ed p t a. And, and it's selfish. It's not, it's not all in service, right? To meet other adults who can relate in some way. I met someone at one of those meetings and they're new to town and I'm not, and we forced our kids to get together and hang out a little bit. And it was kind of a disaster, but it was great. I'm on sabbatical this semester, so I'm actually doing pretty remarkable self-care and have the luxury of having some time when my kids are in school. We have given up on trying to even find sitters because again, how many times can my kid experience rejection or incompetence or somebody who's not able to handle her? I dream of knowing other parents who have enough capacity and we know each other's kids enough that we could at least do some sort of, you know, co-op exchange of, of childcare, of anything that's clearly not in the, in the works here. (00:38:03): I've had to reach out and connect with parents of kids with disabilities online and social media and joined groups. And even summer camp, I reached out to this na, you know, a national group of parents and said, where do your kids go and what works? And, and not even spec, you know, specialized camps, but like, hey, you live in a different part of the northeast than I do and it seems like you've got more options. What are the just general camps there that don't kick your kids out? And so trying to mobilize those resources and recognizing, again, the privilege that I would consider driving, you know, six hours to stay in a hotel so that my kid could get a camp experience. This is, this is not on that question specifically, but just if I can, I feel like, and I have to be careful how much I talk about the other kiddo in my house right now, but I, I feel like I have this little built in control group because I have one kid in my house who is identified with labels and, and one kid who's not. (00:39:00): And, um, I think it's gendered in some ways, and it's also about age, but I am finding that I have lots of options available to me for the younger boy who hasn't been identified, even though he doesn't look that different at home or in daily life, right? There's lots of similarities in terms of behaviors and processing and energy, but he hasn't gotten that label. And he is a young, charming boy and it just speaks to me again, and I know this is the broken record, right to the ableism that I can send him. I probably have five choices, six choices of places I can send him this summer, but it also has a built-in comparison. And so we have to have conversations and I'm curious if you do this in your households, but like, he'll say, why can't she come to my afterschool? And we'll say, because I mean, he explains it now as they were mean to her, but I was like, because, and she says because they don't think kids with autism can have fun and they're dumb and I wanna read them a book about autism so they can know that's not true. (00:40:04): But basically, yeah, no, she's, she's awesome in that way, but basically she can't come because adults are, are dumb, are mean, right? I don't know what other words to use, but because they wouldn't bother to get to know her, uh, well enough to, to have her in that setting. But then she has to ask that about not only about him, but about other kids she knows who are there. Speaker 2 (00:40:28): Mm-hmm. that happened to me too, our family. You realize you're at the moment where like, ooh, I am going to, this could be pivotal, right? Yeah. So disability is a family affair for our family and we're cautious about everything is associated with Down syndrome X so-and-so can't do X because of we're like, hmm, might not be Down syndrome. It could also be, you know, because she's 10 and she has her own personality, right? But back to that camp where we got a call within the hour because my daughter quote wouldn't leave the area, you know, after about a week my son went and I said, whatever you wanna decide, we'll honor, I know you're having fun and you've had a week there, but I'll tell you, I'll tell you why we decided to, to not take your sister anymore. Speaker 3 (00:41:22): Mm-hmm. , Speaker 2 (00:41:23): She doesn't feel welcome. They don't know how to welcome her. They may want to in their heart, but they don't know how to do it. And that could really her, that could hurt her heart. Talk about mom guilt, right? But you decide son, whatever you Speaker 3 (00:41:39): Want. Right? Right. , you still wanna go even though they betrayed her. Right? Speaker 2 (00:41:44): Yeah. Um, and I was really proud of him because, you know, he's a little narcissist. That's what they're supposed to be at that age. Yeah. And he's like, well, I don't wanna, he, he actually said, one of the camp kids said, you're, she's so weird. And he didn't know that that camp kid didn't know that he was talking about my son's sister. And so my son in that moment, beautiful advocacy, just looked at him and said, yeah, but weird's cool and walked on. Speaker 1 (00:42:14): Perfect. Speaker 2 (00:42:15): So that was a proud parent moment. And then ultimately he did say, you know, it's fun, but if they're not gonna welcome my sister, then I don't really wanna go. I think that's a teaching moment. I think secretly I want him to be a civil rights advocate, , but he was able to recognize that. And I think the beauty of siblings is not only are they are, is their narcissism beneficial because it is a sense of equality and they balance me as parents, but there also is a tenderheartedness that goes with it that mm-hmm. , I really try to treasure, Speaker 1 (00:42:51): I, I gotta say with three kids, I very much see it this beautiful relationship where yeah, it's self-focused and there's a lot of like questions of fairness, but there's also this, I mean, I know I have built in bias and I just see like the lack of it with disability when it comes to my kids because they've just been, it's their life, right? But at the same time, like the empathy that's there, they also don't take any crap from each other. And especially their brother. There's no like, there's no like down syndrome card for them. Like he gets a pass and I'm like, sometimes I've gotta be like, no guys, he needs a pass on this. And no way. Speaker 2 (00:43:33): Nope. Speaker 3 (00:43:33): Can't change the rose midstream mom. Speaker 2 (00:43:35): No . Speaker 1 (00:43:37): Jessie, can you give us some context as to, you know, you and your wife, you have two children, but you're careful about talking to them. Can you just explain to our listeners why? Speaker 3 (00:43:46): Sure. So, um, my wife and I have been foster parents for about 10 years. And, um, so the other child in my house right now is, has lived with us for about a year, but as in foster care, my daughter has had a lot of kids come through our house since she's been around, but typically it's been teenagers. So this has been a new experience to have a younger kid who's with us long term. I would say, you know, I hear a lot how good it's been for her from people who are well intentioned, but it's really good for both of these kids to have each other. And we're navigating all of what comes with that, right? When, when kids live together as siblings, even if it's short term, but also what happens when someone moves in who you didn't know when they were a baby for the kid and for the adults, right? (00:44:32): It's a, it's all new. And I think balancing that, her sense of herself and just being nine and a half and in that 20 age where she's trying to figure out what is her and what is, you know, who is she? And, and sometimes wanting to explain things away or sort of get the pressure off of her by saying, well, it's because I have autism. And sometimes we have to say like, Nope, it's because you are between, or, Nope, it's because you are you. So yeah, thanks for, for asking that as absolutely shaped our experience as parents and has shaped my kids' experience of kind of us as a family. And again, my parents were foster parents before I was on the scene. So one of those other things that I've kind of come by naturally ish. Speaker 1 (00:45:22): No, it's the generational stuff is beautiful. It really shapes who we are. And that's why like Cindy, when you were saying earlier that hope for our future, I really feel like it's moving too slow for us and it's moving too slow for our kids. But when I think about how we are making steps towards inclusion, this generation coming up can really move the marker, right? Speaker 3 (00:45:43): I I, yeah, and I mean, this is a school thing, not a, not a camp thing, but just back to this issue, some, my daughter will sometimes say in her classroom, well, it's because I'm the only one with autism. And her teacher, her current teacher, I really appreciate this. She was like, you have no idea what's going on with other kids' brains in the classroom. You're certainly not the only person whose brain might work differently. And so that teacher above and beyond whatever required social emotional learning they're doing is bringing in the concept of neurodiversity and neuro divergence and like explicitly introducing stories about people whose brains and bodies are different. And yeah, some of that is to help my kid, but some of it is just because she knows it's good practice and that she is training this next generation of empathic, compassionate, you know, inclusive people. Speaker 2 (00:46:36): I think that's amazing. And I think what I'm, what I'm seeing with our youth leaders and youth in general and the impact of Covid is they really had to be introspective and reflective and try to identify emotions and feelings and, and, and learn coping mechanisms beyond their age. That, let's be honest, some adults still don't have . Like most people are in arrested development at a certain age, and it's not their chronological age. But I think this next generation, hopefully we can get to a tipping point where there is, you know, coupled with legislation and coupled with, with compliance and coupled with mandates, I think we can get there, but it involves speaking up. And I, that's the one thing to your question, Erin, what we can all do is, what you're doing is, it's not hard, it's to share your story. It's to share. (00:47:29): Everyone has a phrase that they remember that some jerk said to them out of ignorance, ignorant malice. And we can remember those phrases and harken back to that moment, even if it was 10 years ago, sharing those moments and sharing those stories as part of the education process, trying not to shame, but if one feels shame, hopefully that opens the door to understanding themselves. And I'm still on that process. I wasn't a social justice warrior, I wasn't like a disability advocate until it hit my life. But I, I always say, boy, as a, as a Asian woman, I have experienced sexism. I have experienced racism, and as I'm getting up in age, I'm gonna start experiencing ageism. But there's nothing like ableism. It is so deeply rooted in, in justified that there's a lot to dismantle and the, the disability rights movement is still fairly young and we've accomplished so much. So I think it, the one thing we can continue doing that's not too hard is collectively sharing the stories and helping people listen and understand and finding that way. Well, we've all felt outcast, unaccepted, not belonging and using that as an entryway to really understanding and making change Speaker 1 (00:48:57): That is really beautiful. And Cindy, you've put it so perfectly because as a white woman from rural Ohio was where I grew up. And then you just didn't, you know, you didn't see much of anything. And so my perspective on ableism, you know, I considered myself worldly since, but ableism feels really brutal compared to the other things I've witnessed. But aside from sexism, I've witnessed those from the outside. So to hear your perspective as someone who has felt that and, and sees ableism as something a little darker and deeper, that kind of validates my perception of it. Cause it, it just feels awful. Speaker 2 (00:49:36): Yeah. There's, and the education of it is so behind, right? So disability wasn't included in the Civil Rights Act of 1964. So there's a lot of history and educational opportunities that were missed that I grew up understanding, well, racism, because I'm Chinese and heard the ching ch China and, and you know, when Coronavirus go back to your country, I was like, I was born here in, in the States race is based on how you look. Yep. Right? Not so we can have first generation Europeans, but they're not considered immigrants because of they don't reflect a look that's different from what's considered quote, non hyphenated America. But I wanna sort of frame this as a positive. The, the discussion, even looking regardless of your politics, but seeing disability in the national, global ether is really promising. And just to continue those conversations, I think is where we need to go to get a tipping point. (00:50:43): It's never gonna be fast enough, but I think it, it will gain momentum continually if we, if we don't stay silent. And sometimes that's the hardest part for parents. Like someone asks me, he is like, oh, you must love public speaking. I hate it. I hate public speaking. I hate it. The TED talk, the TEDx talk, I hated it. Every second of it. I think I blacked out like halfway through I was like, Ooh. But you get out of that comfort zone, out of necessity and then you go home and you do what you need to unwind or you, you do what you need to. Even if your voice cracks, tell your story. I don't care because it makes an impact. Speaker 1 (00:51:20): I'm literally gonna make sure I add to the description. You're a TEDx talk by the way, because it is spectacular. Speaker 2 (00:51:27): Oh God. you're brilliant. Black out. Sorry, I wasn't trying to name drive, but that was like, someone's like, can you do it again? I was like, nuh, no, that's, no I don't wanna do it again cuz I blacked out and I don't know why I wore that outfit. But here we are. . Speaker 1 (00:51:44): Oh, Speaker 3 (00:51:45): Well Speaker 1 (00:51:46): Before we move on to the next question, because I am gonna get back to summer camp. Um, before we wrap up, I'm curious if you have anything to add to this part of the conversation? Speaker 3 (00:51:55): I was just gonna jump in. You know, my evolution has been fascinating. So I, I grew up again with parents who were pretty, um, ahead of the game around inclusion of various sorts, including disability and a and ableism as a, as a kid. It was just, it was something that we talked about, um, although I can remember some, not my, in my family, but some pretty like things that make me s shutter in school. And then I got involved in mental health advocacy and activism as a very young person and continued to do that sort of on the side. And then did a master's in rehab counseling where I was trained for two years on helping people with disabilities get jobs and, uh, you know, access resources. And all the while was living as a person with a not visible disability and, and really not able to advocate for myself, but could advocate in these sort of other ways and now have become a passionate advocate for my kid and other kids. (00:52:59): And so I've been doing some reflecting around why didn't I think I was worth that, right? Why, why, why could I do this? And obviously as a parent it taps into something very different, but I could do it sort of tangentially, right? I could do it on behalf of a community or on behalf of an issue and, and it was part of my profession and my education. Um, and certainly as a psychologist, I worked to help people with lots of different struggles. But it has been a, you know, I wonder, was it my own internalized ableism? Was it, uh, self-confidence? What, you know, what is it? And I'm not gonna find the answer on this podcast, but it is something that I've been thinking a lot about. There's Speaker 2 (00:53:33): Actually, there's actually a, sorry, just to interject, it would be really interesting and I'll tie it to summer camp, if we could, uh, encourage camp owners and camp counselors to take a disability bias test. Yeah. I took one recently not as , not as good as I thought I would be. , it's so deeply ingrained, especially, you know, coming from an immigrant family and the harder you work, the more you achieve, the more get this degree, get that degree you all to be competitive. And then to really reframe that in a way where as it relates to disability takes a lot of learning and unlearning and, and self-awareness. But that would be a fascinating experiment, is to have camp organizers start with a, a disability bias quiz that takes 20 minutes and then use that as a conversation starter. Speaker 1 (00:54:34): I wonder if there's a way we could advocate to require that. It's a, it's an interesting question and it's interesting too because I think I kind of went on a tirade earlier about camps specially designed for kids with disabilities, right? But I recognize my own bias there because I, um, my son really enjoys Special Olympics and he's a special Olympian skier and he's on the swim team now. And I see the benefit of that, but I still have a hard time fully accepting it. And I don't know if that's about me or about him mm-hmm. and even though I have concerns about camp, you know, how do I know he wouldn't really enjoy a camp that had more kids like him? I don't, I don't know, uh, where that's coming from. I do know that inclusion is important. I do know that segregation is not great, but Speaker 3 (00:55:25): Sorry to interrupt you, but for me it's about choice. I wanna be able to choose whether I send my kid to a specialty camp where she can meet a bunch of kids that maybe are like her or whether I choose that she loves Minecraft and she just gets to go to Minecraft camp. And I don't have to think beyond that, right? I want it, I want it to be about access. I want everyone to have that choice. You know, I, I'm talking about a community where there's tons of camp choice, like, I don't know, there's so many specialized camps based on interest or mm-hmm. or, you know, sport, but, but not in these other ways. So, Speaker 2 (00:56:00): And I, I think it also boils down to belonging, right? Yeah. Erin, I really appreciate you sharing that because, and being vulnerable about that, because I think that's part of, and you and I both have children who have visible disabilities, so you have an invisible disability and, and I always empathize with parents who went on that journey because at birth they're like, Ooh, it's, she's a genetic overachiever and this is what you can expect, right? Or he's at whatever with Down syndrome, any other genetic anomaly. But when you have a child who doesn't have a visible disability, I think there's so much more growth and awareness in, how do I say, self-doubt, parenting doubt, maybe. But I think to your point about Special Olympics, I'm such a radical inclusionist and, and I realize that that's what I want. And sometimes I have to hit pause and my daughter's really good about, bye mom. . Like, she says it like, bye Felicia. And I'm like, okay, . It's finding a place where she belongs. And I can relate to that in terms of growing up in the US being Chinese and going to Chinese school and having a quote, a subculture so that I felt a sense of belonging and other people who had a hyphenated, hyphenated definition of American. It, it's a tough one. So I appreciate you sharing that vulnerability. Speaker 1 (00:57:20): Hmm. Thank you. I, I wanna talk about this one camp that my son did go to. We lived in the DC area and there's a camp called Camp, uh, accomplish. It's through a, a organization called Melwood, and it's fantastic. Okay. They offer day camps, they offer overnight camps. It is a camp for everyone, disabled or non-disabled. Everyone is welcome. A lot of the kids that did not have disabilities were siblings. It's like on this sprawling acreage kind of in Maryland where you'd have to like get on a bus to go down. Um, my son was younger at the time. It took a lot of, you know, letting go for me to let him go there. But when I went there for orientation for him, they were able to accommodate virtually everyone. They had nurses on staff when I talked about my son's elopement. Um, and we, I say elopement like everyone knows, my son's prone to runoff and he was very fast. (00:58:19): He's still very fast. He still does it. But then it was like a lot. And so I would always be on high alert and if there were roads and all that. And when I was running that through the camp folks at orientation, I was like, so how do you handle that? Will you stop him? They're like, we don't touch the kids. We do not restrain them in any way. And I was happy about that, but I was still concerned. But what if they're like, we know what we're doing. We will never restrain your son. That has never been a problem. It will not happen. And that's a lot of faith to put in someone. But when I saw it in the works, it was just amazing. I mean, there was proper training to the point where I wish that this place would put on a seminar of seminar for school systems. And I wish there were more camps like that mm-hmm. . And so to me, this is the closest thing I've ever seen to like a dream camp. You know? I'm sure it's not perfect. I know a friend whose daughter goes there, uses a G-tube, needs assistance walking and has a ball every year. Right. Wow. Like they are able to do this. What's So I'm curious, oh, sorry, Cindy, Speaker 2 (00:59:26): Sorry. I'm like, I'm taking notes. What's this camp called? Speaker 1 (00:59:28): . Bellwood. Bellwood. And I can put a link in the, in the description and I, Speaker 3 (00:59:32): Yeah, I just pulled up the webpage. Speaker 1 (00:59:34): . Yeah. If this could be something that would happen across the country, to me this is like the framework. This would be the framework for something. If, if we were to do this. Now, Jessye, I know you've put a lot of thought into this and Cindy, I'm guessing you have, but I'll start with Jessye to give Cindy a break. Jessye, what would your dream camp be? Speaker 3 (00:59:52): So it's so much about the framework and not about the actual, right. So it would be, instead of telling me what they can't do, it would be starting with we know what we're doing and we're, you know, we're gonna keep your kid safe. But it would start with a question of what would make this a successful experience for your kid? And I'm not a Pollyanna, I know not everything can be individualized, but I want someone to start with, how can we make sure your kid has fun and feels welcome rather than, here are all the things we can't do. We can't give meds, we can't do this, we can't do that. We can't promise this. It would be two pieces. One, communication that we've got this and we're professionals and we have experience and more than experience, we have interest. We don't want you to force us to make an exception. We're a big tent camp and so we welcome you in. And then the second piece would be, how can we make sure your kid has a blast? Not how can we manage her behavior? Speaker 1 (01:00:51): I love that. Cindy, how about you? Speaker 2 (01:00:54): Uh, pretty much what Jessye said, , um, seeing the, seeing the kid first and um, giving me, as a parent a sense of faith that they know what they're doing and that it's, we talk about universal design all the time in education K-12, that there are universally designed options for what camp can look like and that there's a respect for what my daughter and my son may or may not want to do. And ways to support that in those moments. Cuz it, summer camp should be about fun. Speaker 1 (01:01:31): I love that. And I think it's important too because a lot of times our only option for our kids is summer school. And I mean, summer school's made to be a little more fun, but it's still at school. And it's still school. Mm-hmm. . And that's not fair. Ending on a happy note, what are your favorite memories of summer with your children? Speaker 3 (01:01:55): Oh, this is hard. Yesterday I came across pictures. My phone, you know, happily suggests memories. And so interestingly we were traveling to New York City to, to participate in a study, but we decided to stop outside of the city at amusement park. I had gone to, actually, my wife and I had both gone to when we were kids. My daughter, who consistently has gone to bed very early her whole life, stayed up late enough and got to see fireworks. And they're just these incredible pictures of her, first of all with a ca a cotton candy that's like, she was five I think at cotton candy as big as her body. Um, and then these pictures that I captured of her seeing fireworks for the first time and she had ear protectors and like, we made sure the sound wasn't overwhelming to her and it was quiet cuz it was, you know, a weeknight, I think and just a magical look on her face of like, I can't believe this is real. Every other time that we had been around or available for firework, she was asleep or it was too, it was sensory overload. It was too loud, it was too crowded. And we found a way to do it a couple times since then. But that is just this, like, her cheeks are tan and pink and, and she's sweaty and she's just ridden, uh, carousel in the, you know, dark. Um, so that's one that, that there's lots, but that's one that just came to mind this week cuz I was reminded of the picture. Speaker 1 (01:03:18): Beautiful. Cindy, what about you? Speaker 2 (01:03:20): We're lucky to live in southern California or in California. There's stretches of coast and beach so we can drive 20 minutes and really enjoy the beach and the sand. And, uh, both kids love it. It's a great family place because they're too scared to get in the water. So I can actually sit and give them a little, a little length to be away. And both kids love it. They, we dig for sand crabs, make sand castles, go up and get fish tacos and it's a great way to spend the day and enjoy outside and it's free and it's a family thing. So those are some of the happy memories of summer and then getting together with family, um, over 4th of July as well. Speaker 1 (01:04:06): Oh, that sounds dreamy. Yeah. On that note, I wanna say goodbye and thank you both so much for joining me. Speaker 3 (01:04:14): Thank you for, for giving voice to this topic. Speaker 2 (01:04:17): Yeah, Erin, thank you very much. This was fun on Speaker 1 (01:04:25): And thank you listeners for joining us. We're just getting started with this podcast and can't wait to bring you more. Please rate, review and share and tell us what you wanna hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle and we'll talk soon.  

The moment you become a parent, your life is transformed forever.    For parents of children with disabilities this transformation is on a whole other level. For some of us, it's a defining moment where our life is split in two: before and after. Because we're not just parents anymore. We're caregivers.   The end to that caregiving role isn't after high school or college or when our child moves out. It's for life. And the heartbreaking reality is that we're caregivers until we die or, the unthinkable, our child dies before us. That part is rarely talked about because it's so painful, but also because the joy and honor of being our child's caregiver overshadows it.    Jamie Bruen bravely opened up to The Odyssey about all of it. Who she was before she was a mother. The trauma of her son Liam's birth. The amazingness of who Liam is. The beauty of the family and community that surrounds her. And the evolution of her existence from a war veteran to an adaptive physical education teacher, to a mother and caregiver, and now a professional baker.    Her journey is a powerful one, her story is worth every second of this nearly 90 minute listen. Join us.   The Odyssey: Parenting. Caregiving. Disability.   Need emotional or informational support from a parent who's been through situations similar to your own? The Center for Family Involvement can help. https://centerforfamilyinvolvementblog.org/family-to-family-network/     You MUST take a look at Jamie's cookie and cake creations!!   Facebook:  https://www.facebook.com/sweetgratitude   Instagram: https://www.instagram.com/sweet_gratitude_bakery/   Email: sweet.gratitude.bakery@gmail.com     If you want to learn more about Jamie's nutrition coach, you can check her out here. BONUS: Anyone who mentions the podcast gets a discount! https://www.rdnutritionandwellness.com/    Tobaccology, the cigar shop Jamie raves about: https://tobaccology.com   Maggie Austin's sugar flower immersion class: https://maggieaustincake.com/products/sugar-flower-immersion   The Make-A-Wish Foundation:  https://wish.org     TRANSCRIPT: Speaker 1 (00:00:06): Welcome to The Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host. The Odyssey Podcast explores the unique journey we're sent on when a loved one has a disability. I started down that path 12 years ago when my first child was born with Down Syndrome. Arlo was the first person I met with what is the most common chromosomal condition in the United States. I was ready to be a parent, but I wasn't ready for this. No parenting book. No wisdom from the elders in my life had any insight on what it would be like to have a child who needed support for the rest of our lives. My search for answers and support brought me here, working with the Center for Family Involvement at VCU'S Partnership for People with Disabilities. We provide families with emotional and informational support that is so desperately needed. Our podcast digs deep into the joys and hardships we face. We're gonna celebrate how amazing this odyssey of parenting, caregiving, and disability is, but we're not gonna shy away from the tough stuff either. And today we're doing all of it with our guest who happens to be a family navigator with the Center for Family Involvement. And someone I'm lucky enough to call my friend Jamie Bruen. (00:01:22): Jamie, rather than formally introduce you, I want you to tell us who you are. Your life story is so compelling, and I've always been in awe of you. And like many of us, you're almost two completely different people. The one you were before your child and the one you became because of your son. Liam, why don't you start us off with who you were and what you did before you became a mother. Speaker 2 (00:01:46): Sure. Um, I honestly think my whole life I've kind of been trying to figure out who I am or where I kind of fit into the world. It took me nine years to get my undergrad, and in between that time I joined the Army Reserve. I did one deployment, went to Iraq when we, um, invaded the country. Um, but after that, I decided after my six years, um, and being overseas, that wasn't, not that it wasn't for me, but that I eventually would love to have a family. And it's hard on any parent, but especially a mother. Um, not that I had any near future plans of being a parent, um, single no way. But, you know, just thinking down the line and, you know, war's, war's, not fun. So I stopped and finished up and I, I eventually, I had my, um, undergraduate in health and physical education teacher and I decided to go get my master's in adapted physical education. (00:02:40): Um, the program was amazing, fully paid for, and a stipend. I wasn't sure if this is what I was going to actually be doing, but I figured, hey, if you can teach a child with different disabilities, everybody's on different skill levels cuz you could even have a child that does not have a disability whose skill levels are so poor that whatever you learn from working with people with disabilities that are stereotyped to having these horrible skills, it's gonna help because a good teacher should be able to target any child at their skill level, healthy, non-disabled. So it couldn't hurt and I wanted to go to UVA my whole life. So it was like a dream come true. So I did go get my master's in what a wonderful experience. The program was great. I loved working with the kids. Um, it was just amazing. But after I left, after I graduated, I should say I'd always wanted to live in Boston. (00:03:37): So I figured, hey, let's go up and teach in the city because I don't know what I'm gonna be teaching adapted pe but I'm guessing stereotyping that city schools are not fully funded. Kids are probably lacking in certain skills, so let's go for it. And I wanna live in Boston. So I did. I went up and taught elementary and middle school, pe um, and yes, skill levels all over the place. Equipment underfunding a lot of the stereotypes about the inner city schools, but also some of the most amazing kids. It was, you know, I can't say it was a great experience, but it was an experience and still have communication with some of the kids and parents from 14 years ago. And it's been fun to see a lot of them succeed. Um, but while my last year of teaching, I became pregnant, um, single mom and I was like, okay, I'm gonna do this. (00:04:34): I have a very supportive family. My first pregnancy, I was working full-time plus extra hours coaching and it was an extended school. So all the tests, everything came back fine. Looking back at it afterwards, I was like, oh, you know, there was no movement but I felt with a water moving around. So I was like, oh, that must be it. But I never had any of those kicks or anything like that. Um, and actually at one time I think they did a test in his marker came up that he could be positive for. He had a risk, he was at higher risk for down syndrome. And I was like, so you know, that's my kid. That's gonna be my kid. We're going forward no matter what because I'm connected to this child and he's gonna be loved. Little did I know that was not it. (00:05:18): Um, so his birth, I don't, I don't, this this population that I'm talking to you guys right now, listeners, you'll, you'll understand this. I don't really talk about this much with other people cuz it is a very, very hard topic. Um, his birth was very traumatic. Um, you know, my water broke a month early. Um, my brother-in-law and sister came over, rushed me to the hospital, took a while. His heart rate was going up and down. They tried to induce me. Um, he didn't come out. So we went in for the emergency C-section. Um, and when that came, when that came, I remember sitting there and just at that point before he's come out, the reality of everything hit me. And I was talking to the anesthesiologist saying, please let everything be okay. My sister's there with me and I'm holding her hand and I'm saying, please let everything be okay. They get Liam out. I hear what a beautiful head of hair. And then silence and he's just rushed out of the room. Um, it was Memorial Day weekend, so there wasn't much staff there. It was horrible, horrible, horrible, horrible. Um, I was, since the C-section, they brought him up to the nicu, you know, they had him intubated, they brought him to the NICU and I had the C-section and I couldn't, um, do anything. And I'm still drugged up. And the questions coming in were, what drugs have you taken? What have you done? And I'm sitting there like nothing. What's going on with my son? (00:06:53): What's going on with my son? Um, I didn't get to see him for a while. I forget exactly how long cuz everything was such a blur. Such a blur when I got up there. Most beautiful little boy ever. His head full of dark hair. Oh so much hair and not moving one bit. All these wires and tubes through him. And I just see this little kid sleeping peacefully and a Red Sox fan. Big Red Sox fan. And I remember sitting in there over his little, I forget what they're called, his little egg shell thing, whatever it is, plastic thing banging on it. Same please Liam, we'll take you to a Yankees game. Please, Liam, just move. Be okay. All you can, you can, you can, you can like any sports team you like, just be okay. Just be okay. I'm okay. So then we just had to wait. Um, the nursing staff were there was amazing. I think it took 48 hours for me able to be able to hold him where a nurse who had been like, I have a child with a disability. Have you held your son? And I'm sitting there saying no. She put him on my chest and I just held him and hugged him. (00:08:17): Uh, um, and it was most beautiful thing ever. And so there began our journey, um, not knowing what was going on. (00:08:32): No one could have known. There's no test for what he has. He was actually misdiagnosed. They did some a biopsy. They said he had a lot of glycogen storage, a glycogen buildup in his muscles. And um, they misdiagnosed him with glycogen storage Type four. I think there's no treatment. Um, there's no treatment for anything he was diagnosed with really. So not it would've mattered. But what I did was I, um, saw all his symptoms, how he presented what you needed to support with everything. I got online and I found congenital myopathies. Um, and the one that he seen the most, like was called mild tubular myopathy. N t ntm affects mostly boys. It can't be X-linked. So I reached out to them and they put me in touch with other people. Um, because now I had to go through the process where my son can't breathe, he can't move and he can't feed. (00:09:31): What am I gonna do? Am I gonna bring 'em home? Or was uh, they put it, was I gonna let him expire? Um, is just a horrible way of saying it. Horrible. Who the hell says that? That's awful. Mind you, this is not the nurses. Nurses are amazing. Um, so I mean in truth is, and saying Am I gonna let him. Are you? Because it would be nature taking its course. It's not letting you know, it's not, I hate that because this is the worst. This is an extraordinary situation with pressures on parents. Um, and just the way to say, to say it just puts different pressures on people and people have no clue. Um, but the m t m people got in touch with me. Um, and I started talking to people online, to people that had let their sons peacefully leave this earth. (00:10:30): And uh, one person in particular who had let one son leave instead of it was the worst thing she's ever done. Um, and then her next son she had who had the same condition and it's a hard life. It's a very hard life, but it was a harder life watching her son leave. It was the worst thing she ever did. And other people who had with their sons and felt that that was the correct thing for their children. Um, I even had one mom, her name is Erin. She's the most amazing woman in the world whose son was 12, I think about the same age as mine, who was at Boston Children's Hospital. He's so, like, he was so like Liam, come and visit me while I was in the NICU. And I remember I was so tired. I was like, I can't handle this. (00:11:15): I didn't answer her calls and she came with her son anyways. I wouldn't recommend that to most people for, unless you live our lives. Don't, don't go be busting on people's doors or doing anything , especially at that time. But I'm forever grateful. she will who passed away a year ago in February from his, my tubular, my apathy came and visit me in the hospital where she talked to me. I got to talk to him and see what life would be like real hand. Um, and the impact that has made on me was amazing. But I also did, um, have all the tests done to see what Liam's, well not tests, but just whatever they could do to see is Liam in any pain? Um, is Liam in any pain? Is he suffering? Cause he is. And he was. And he still is my number one. (00:12:10): Everything is for him. Um, and there was nothing, there was one time where I came in and his stomach was distended and they weren't sure if he was gonna tolerate his needs. Um, so they decided to give him a G tube, or do the do feeding through the g tube. And he was fine. And I, I don't know, it could have just been a bad day cuz he has been fed through his G-tube by mistake from nurses and he is been fine. But that time I was like, I don't know if my kid's gonna even be able to have nourishment. Um, but he was fine. Um, so after that we, he was in no pain. He was just the most peaceful sweet little guy. Um, and I talked to my family, being a single mom and uh, just the support. I was so blessed. My dad was like, we can do this. (00:12:58): We can do this. Not, not pressuring me, but we can do this. What do you want to do? And there I am thinking, okay, cause they're giving me all these timelines. What life's gonna be like. The doctors are telling me, I'm like, okay, it's gonna be a couple years. I can do this. Couple years. They're gonna tell me he's gonna die. And what they told me he had, no one had lived past seven months at that point, or very rare. There was only a couple people that had lived past seven months. And I'm like, you know what, if I've got seven months, I'm gonna make this the best. Um, oh boy that came into that seven month who was just like around there. It was just wow. Terrifying. Um, so I decided since as my mother's instinct, Liam was peaceful, happy. (00:13:44): I was gonna give him a chance of life and whatever. People who don't live our life say quality of life here. I had this mom whose son came in to see me talking to me about the beauty and these moms, they never soft coated it. I would, they would've never told me this was gonna be easy, never once to try to influence me. I was so grateful for that. I mean, I went into this knowing it was gonna be hard, not fully understanding cause I hadn't lived how hard it's gonna be. But I also had this amazing support from my family, online people. Um, I said, okay, I'm gonna do this little did I know what I was getting myself into. Holy smokes, what the okay, . Um, no regrets, trust me. No regrets. Um, so he was at the Boston for two months and we were actually able to have insurance pay for our flight down cuz my family lived in DC area, Virginia. And where he transferred Children's Hospital. And then we went to a hospital, they changed the name now, but it was called Hospital for Sick Children. Last time I looked, they, no, last time I looked they changed it to HSC, formerly known as Hospital for Sick Children. (00:15:03): I felt, I'm like, oh yeah, that makes it a lot better. And cuz he came early. I hadn't been, I'd been teaching, obviously I had my time off. I was able to go see him every day. Every day. And I had two…  one sister and another friend who lived up there, who were there, who came with me when I was in Boston. Mm-hmm. every day to the hospital pretty much every day. My mom drove up every day we were going in there, which was also crazy cause I was holding him. And I ended up having a blood clot a week later after he was born and having to call an ambulance cause I'm on the floor rubbing it, which is the worst thing in the world. Um, in my leg. A  DVT, um Right. I'm jumping around cause I already got to DC but now I'm back to Virginia. (00:15:41): I'm, I mean, as I already got to Virginia now I'm back to DC . Um, so that was also in there too with the emotional postpartum, everything. But we did get to HSC where he was there between Children's and HSC for another two months. He came home at four months. We had to, we had to have a nurse come home with us. She worked one night I think and said good luck and left . Oh wow. I know. Oh. So, uh, talking about nursing, as many of you all know in this home healthcare, the stories, whew. I, unfortunately, I have a very good network of three nurses. I could use a little more help. Two night nurses right now, and the one's been with us since that October. He came home in September and she started working that October. And she's been with us ever since. Speaker 1 (00:16:26): Are you serious? Speaker 2 (00:16:27): I am, but I also knew. Because she, she came in with a notebook, taking notes, walking around it, just her attention to detail. And I was like, Hmm. Then she … she talked to me later. She was like, I don't think I'm gonna be able to work because I need to be able to get home at this time to get my kids on the bus. But I said, okay, that's an hour earlier. We will be down. We will be down. You can leave earlier. Can you please work? And guess what, she's still here. Which, oh, sorry. Did you have a Speaker 1 (00:16:57): Well, no, I was gonna say, let's stop for a second because Liam is how old now? Speaker 2 (00:17:01): He's 13 now. He's 13 and a half. He'll be 14. She's been with us for over 13 years. And that is almost unheard of. Speaker 1 (00:17:09): Oh. Uh, that as anyone with any, most of our listeners would have knowledge, I would think, given the topic. Right, Speaker 2 (00:17:17): Right. Speaker 1 (00:17:18): That is unheard of. That is a dream come true. I bet she must be like part of the family at this point. Speaker 2 (00:17:24): She is all my nurses. Well I, like I said, I only have three, are part of the family, you know. But it has taken…  I am blessed that my parents are able, they open their home to me, their finances, to Liam and myself. So I'm also, I, I know how fortunate I am where I've been able to adjust to adapt to her schedule where she'd have to leave a lot of times in the summer to go to Puerto Rico to visit her family. So I had that extra benefit of being like, okay, I need you here. She was working nights. She now brings Liam to school. I don't know if I could ever find another nurse that I trust like her. So there's been a lot like of give and take on both of our ends. That I'm in a situation that I know a lot of people aren't in.  That situation to be able to adapt your own schedule when you have a good nurse. If I hadn't been able to adapt continuously, she wouldn't have been able to stay and then, and go through all this craziness with people. Speaker 1 (00:18:14): I think that that in and of itself, Jamie, is something that we should have a whole separate podcast about. Because I think perhaps, uh, think about like, like how to work with someone who's amazing to keep them for as long as possible. That in and of itself is just, we can dive in. I wanna go back and I wanna first off, thank you because you were crying. I was crying and anyone listening, I, I can't imagine they have dry eyes because anyone who has been through something similar can very much relate to what you've been through. I mean, I know what it's like to not be able to hold your kid in the NICU. Speaker 2 (00:18:55): Right, right. And I, I don't, I don't talk about it with people. And this is the first time I've gone over it in probably years. You know, every now and then I'll talk about it with other moms one-on-one that might be in a situation. And I might not go into all that detail, but they talk about PTSD. I mean the first six months, if anybody was having a baby about to have a baby where I'd be crawled up in a ball on the floor, on the floor crying and still sometimes it just, it hits you. Yeah. It hits you so hard. And it's like you can't, you can't control it. That the continual trauma also that is involved but that birth trauma. And I can't imagine the parents that go through this and then have to leave permanently without their child. I mean, how that like, my heart, my heart to these parents that's suffering. I mean, we don't talk about it enough in this society. I've … the quote, the parent, the quote that there's always a husband that loses his wife is a widow or a wife that loses her husband is a widow. A child that loses their parent is an orphan. But what is a parent that loses their child? We don't talk about that. And then having a traumatic birth and then someone leaving without their child. Oh my heart. Speaker 1 (00:20:16): It's, it's unnatural. I mean, I think about losing a kid at this point. You know, at any point, you know, my children are 12 and 10 and almost eight. And as I tell them, they, you know how kids ask strange questions and like, what would you do? I'm like, I don't know. I would have to live for the rest of them, but I would be dead inside. Speaker 2 (00:20:39): And that, that's honestly one is my, my biggest, I try, I, and I'll talk here about it. I try not to, I might say that to people, but I have to because my son, I have to outlive my son. (00:20:50): Yeah. And when I, and I can say that, but when I actually stop to think about it, seeing other friends that are outliving their children, or especially if they don't have any other children and seeing how they can function, the other children might help you cuz you have to for them to survive for them. But at some point, like, I need to outlive my son. He cannot go into an institution, he cannot be hospitalized. It would destroy him. It would kill him. Um, so that, yeah, that's a hard reality. Like a smack in the face. It's just, i I don't have words for that because it's just a reminder right now, living in the moment. I mean, we have everything prepared. We have his graveyard, I have my graveyard prepared. My parents help out with this again too I’m  so blessed. You know, I have my son's graveyard, his plot ,mine. And that when you stop and think about that, it's just, it's morbid. It's horrible, horrible. This is something that has to, nothing can happen to me. Speaker 1 (00:21:54): That level of pressure and stress that we live under, that is something I don't think parents of non-disabled children can even begin to understand what that does. That constant, it is always in the back of our heads. Um, Speaker 2 (00:22:12): Always, Speaker 1 (00:22:13): Always, Speaker 2 (00:22:15): Always, Speaker 1 (00:22:15): Always. Speaker 2 (00:22:16): People that will know that they will outlive their kids. They have to have the money, they have to have, who's gonna care for them. Kids can't live on their own as they become adults. And that pressure is just, it's unreal. Speaker 1 (00:22:29): It is unreal. I, I once had someone say to me, and I'm sure you've heard the gambit of the most ridiculous, insensitive, ableist commentary, but someone once said to me is, you know, my son has down syndrome. And they said, oh, you know, parenting always comes with letdowns and disappointments. You just got yours at the very beginning. And I was a new parent at the time. Uh, if I could turn back time right now, like I would've said some expletives because that's really all it deserves. But instead I just sat there thinking, you know, this is someone in their seventies and I should listen to them because they're wise and it still makes me angry. I mean, what kind of things have you had to deal with? Speaker 2 (00:23:13): Oh boy. Well, the first thing is why would I ever make my son live like this? Speaker 1 (00:23:20): Oh. Speaker 2 (00:23:21): Why would I do this? Because he's got tubes, he's got wires. He relies on everybody else for everything. Why would I do this? And I, and when people say that now then I, I used to get defensive. Um, now when people say it, I just, I feel so sorry for them. Mm. Because my son has known more love in his 13 years. Probably more love in his first year than most people will ever know. He can communicate with his eyes, with sounds and through a communication device. Yeah. He has his moments. He's a 13 year old boy, but he is pretty much the happiest person I have ever met. And it just blows my mind cuz he doesn't give me time when I'm with him to feel sorry for myself. Like, I hate that if he has a hard time, like there have been times over the years where I've almost lost him and he'll bounce back and two minutes later he's ready to go. (00:24:23): And I'm like, Liam, you need to stop being so happy right now. I need to curl up in my corner and feel sorry for myself. Mm-hmm. Um, and he does not, he does not do that. I ask him all the time, Liam, do you like your life? He's, he'll tell me. He loves it. He loves his life and he doesn't wanna be anyone else. And it just, it's that constant reminder that when people say, oh, quality of life, I'm like, how dare you look at someone's life and tell them what their quality of life is. Just because in this society where everything is, especially in the States, what do you earn? What do you do? What do you buy? How big and flashy are things? And I do believe in God. And that to me, when I when I hear that, I'm like, that's not the purpose of this life. (00:25:17): My purpose is not to be out there trying to go buy things. Sure I have my moments. I like it. We're human. But when I see that smile and that happiness from this kid, I mean this is what, this is what it should be about. Not that pressure. Their shoes. And like I said, again, give me some fancy baking stuff or some workout clothes. And I am like, heck yeah, take my money right now. I want it. Mm-hmm. , um, instant gratification with that too. But deep down, I, I mean there's more of a purpose in this life than that. And if people can't see that, no matter their beliefs, if this is where you think you're actually getting your happiness from external things, you're crazy. I shouldn't say you're crazy. It's probably not appropriate to say but . But you know, you know what I mean? (00:26:10): I know what you mean. Your priorities wrong. You have your priorities wrong. People should be your priority and we can't save the world. That's one thing I've had to learn. Cause I try to save the world. I can't save the world. It could just be the saying hi to a cashier type of thing or smiley and not bickering at people. You know, he's that constant reminder to me of this. Actually when he was little in the hospital, the first week we had the talk with the doctors and I had never seen him open his eyes. So I asked the doctors, okay doc, is he gonna open his eyes? And the doctor told me he might never open his eyes. So, you know, I am distraught as can be. And I go back to the nurses and the nurses are like, they didn't read the charts. (00:26:52): He opened them last night. Okay. And so, you know, our, from that motto, because Liam can move his eyes, um, he can move his little fingers and he can move his eyes, his tongue. And our, our motto has been eyes wide open, kind of living life the Liam way. And yes, I am not perfect at it. There are many times I want to strangle someone, throw a book, punch a wall, um, just get so frustrated with people. And his, his purpose in life is not to open anyone else's eyes. I hate that when people say, oh, but he's done this for you or changed your life. Yes, I'm very appreciative of that. But that is not his purpose. He does do it. He does make me a better person. He makes, I think most people around him, if they are willing to let him into their lives and actually see him as a person, a better person. I mean, I wanna, I wanna go out, I wanna have fun. Sometimes still, I like to think I'm still young at 45. I mean, I do occasionally here and there, but it's, it's not, it's not my number one thing. Speaker 1 (00:27:54): Yeah. Isn't it funny how the things that you think are gonna be great, even even experiences we try to create with our children, whether it be going somewhere or getting them something special, you know, I find the kids just don't care as much as something as simple as listening to a favorite song or Yeah. Or like watching a favorite movie or just hanging out. Like the joy does not come from spending money. The joy comes from just being together. It's sounds cheesy and, and and whatever you wanna call it. But it's absolutely true. Speaker 2 (00:28:34): A hundred percent true. I mean, people are always like, what can we get him or what can we do? And I'm like, yes. He gets excited at a present, he does. But then literally five minutes after he gets his present, he could really care less about it. And if there's a present, I'm like, tell people come over and watch, actually watch a show with him for 30 minutes. Interact with him in the show cuz he likes to interact with the show. And that is the most exciting thing for him. But going back to what you said about like going out, and that's been hard on me because, and I should say it was hard on me. The pressure's okay, I want him to go out, I want him to do this much stuff. Um, I want him to experience this where I realize now as he gets older, he's very adamant he doesn't wanna do certain things, which is also very typical. (00:29:18): Right. And I need to respect that. And when I've started to do that, realizing I don't need to, not that I was ever keeping up with the Joneses, but even trying to do things that I thought he might like or that he can do with friends. Trying to push that where he's like, I don’t  wanna do it. And, and when I've started to learn to respect that, I'd be like, it's okay. It's okay that we don't do this. It's made my life a lot more peaceful. It's okay that I don't have to meet other people's expectations. What their 13 year old might be doing in a way that Liam could do it. Obviously we're not gonna be doing things that most 13 year olds can do. Not not even close. Right. Um, but even from like his birthday or he doesn't even like to go to the movies anymore. (00:30:02): He used to love to go to the movies and now he's like, it's just too loud. It's not as comfortable in his chair, his wheelchair. And he'd rather be at home and watch a movie at home. And you know, that took me, I tried to make him go a couple times and he's just like, I don't want to. And he was not upset about it. He's okay with that. Where I had to be like, okay, he is okay with this. This is what he prefers. He's telling you be thankful that he is telling you this is what he wants to do and he's happy about it. He's not happy when you're making him try to do something. Speaker 1 (00:30:30): I wanna touch on this a little more because this is actually in the list of questions I had for you Jamie. I think it's interesting. I have a similar issue where it's not the logistics you have to deal with, right? Like wheelchair and equipment and whatnot that Liam needs. But, uh, behavioral stuff. And I think the families and the people listening can relate. Like doing simple things like going on a vacation or going to watch the sunset or going to a movie or a baseball game or a school dance. I don't know, you name it. Right? It feels like lifting a mountain, just getting my son to go to school in the morning because of behavioral stuff is like every day as this like task that brings such stress. And so I think often we feel like we need to keep pushing because we want some sort of normalcy. We want to make sure that they have friends because that's the expectation and normalcy. Speaker 2 (00:31:30): So that word normalcy because it seems it's normal to do these things, right? And we've seen that be my, my life is not quote unquote normal and being able to actually get over that. But see here's the thing too. A lot of people and you included have more than one kid. I only have one. So that adds the extra pressure. Cause I know siblings, a lot of times of kids that disabled kids, they have got, they make sacrifices, they make big time sacrifices where the pressure on a parent like you is different because you want your other kid to enjoy something. The pressure on me is different cuz this is what society or this is what's normal and he should be doing. And then when I say to him, okay, we're gonna do it. If we're gonna go outside, we're gonna go outside for as long as you want. And if he's only out there for 10 minutes, guess what? He's happy about it. And then we're back inside and yeah, I'm exhausted. But he's happy. He's completely happy about it. I think since I've been able to let go of that, it's been great. But you have a different burden. I, I hate burden. But you, you have a different pressure. Speaker 1 (00:32:40): I'm okay using the other kids. It's true. The other kids, and I always wanna distinguish the burden is never our children. Correct. The burden is that the world is not accessible. The burden is the ableism society puts on us. I, I just, I I hope that whenever we talk about that it, I wanna make that clear. Speaker 2 (00:33:01): And you know, a lot of times when I have people ask me what's wrong with him, I will now look at them. I was just talking about this with another friend who's people or adults were asking her, what's wrong with your kid? Um, and when adults ask that it, when kids ask it, do I say it a little differently? A lot differently, right? Because kids are kids. They're supposed to. I'll be with adults, ask it. I look at them, I said, there's nothing wrong with him. There's something wrong with the world that can't accept him. be more like, oh okay , Speaker 1 (00:33:29): It's perfect though, Speaker 2 (00:33:30): But I wanna make clear there. It's absolutely zero wrong with my child. And when kids ask it, I'll be like, Hey, there's nothing wrong with him. He might just need a little extra help with his breathing. Where I've had kids be like, oh, so it's like air conditioning .And as most of us probably know, kids are like so accepting and they're like, oh okay. Oh that's pretty cool. Or before it would be like, oh wow, he's got wheels or he doesn't have to go to school certain days cause he only goes part-time, you know? Mm-hmm. Kids, kids are lovely. Why do people have to grow up? But adults, I don't have the patience. Not the patience, but I don't have the bandwidth I should say really for questions like that now because this is my son and the person I love. What's wrong? What is wrong with society? (00:34:12): And I know that times have changed and a lot of us, including myself, you know, I look up when I grew up what's, when I grew up, there'd always be the MDA  Marathon Jerry's kids. Mm-hmm . And that was such a thing to make fun of other kids for, to being a Jerry's kid. Right. Guess what? My son's a Jerry's kid.  That's muscular dystrophy. I look now and I'm like, oh thank God certain things have changied or now we're understanding or that the fact that disabled people are out in society more, it's not like, oh you see someone, you're like, oh wow, you see someone, it's like oh wow, look at that person cuz they're never out and about where now it's nice to see you go to, I go to church. When there're power wheelchairs. There are wheelchairs. Yes. I don't go out too much. But even every now and then, you know, I'll go out and say at a restaurant and you'll see more disabled people or kids And that's the way it not the, I mean yeah it is the way it should be cuz they are members of our society and there's nothing wrong with a disabled person. Speaker 1 (00:35:17): No. Um, and I often think that part of the reason, I'm not sure if you feel this way, part of the reason it was so hard for me when my son was diagnosed with Down syndrome is because I'm also 45 and we did not have people with disabilities in the same classrooms as us. We didn't even have them on the same buses as us. It just didn't happen. We are of the age where our peers with disabilities were left to die, were institutionalized. You know, if we have a peer with a disability who lives in society, our, that is our age. Like I, I wanna go and thank that parent for bucking the trend and being the amazing person they were to say, Uh-uh - this person's coming home with me. This child is my child. Like things have changed dramatically. And I feel like kids now, if we don't mess them up with our silly adult ableist ideas are going to be much more accepting. They already are so much more accepting. It's very, very different. Speaker 2 (00:36:23): Thank goodness. I mean just, I mean that was my big fear too with him going to school. And I know he's sheltered even at school cause he does have a nurse and he does have a one-to-one aide, but he'll be in the hallways and he will have kids coming in. He is in middle school too. As we all know, I taught middle school, we all know if we have kids being middle schoolers, that is the one of the toughest ages. And the kids will come up and say hi to him, make a point. And I'm sure there are kids that make fun of him, but I mean there's kids that do that about everybody. But he is sheltered from that because he does have adults with him all the time. Um, but that was one of my biggest fears going out and people staring and or just completely rejecting him and how hardened it is. Hard. It still is hard. I do also have to remember sometimes when I go out without him, if I see like a power wheelchair and it's all decked out, I'm like, Ooh, let me check it out. And I'm like, Jamie, you don't have Liam with them. They probably think you're staring. Just, you know, kind of do it incognito where I'm like, what's that equipment? What's that new thing? And then cuz you know, it gets old when people are always staring or pointing. It gets really, really old. Speaker 1 (00:37:26): But I think we all do that. Like don't I, I, I wonder and I would love to hear from some listeners to commenting or whatever, whenever my son is not with me or whenever I see someone using a wheelchair because like when you're part of the disability community, I feel like you're just part of it. Right? It's, I do not like, I do not discriminate my love of people with disabilities. Like I, I just, I just have this extra connection because of my son. So whenever I see someone with Down syndrome, I do the same thing. I'm like staring. And so it's almost nice to have Arlo with me so I can be like, hey, and, and so I think you must not be alone, but I feel like we probably give off a different vibe. I hope so. They can feel that like, oh yeah, they're part of the club. Speaker 2 (00:38:13): , I sure hope so because they're at times when I've literally done like a 180 at a wheelchair and I'm like, oh man. Or, but there have been times when I've been out and about if I haven't been with Liam, I actually go up and say hi and be like, I'm checking that out because of my son. Speaker 1 (00:38:27): Right. Speaker 2 (00:38:27): Um, where we are, it's like there's, where's the secret handshake? We need like the secret handshake or sign to be like, Hey, what's up? You know, we're family. We are. Speaker 1 (00:38:35): So Yeah. Speaker 2 (00:38:36): Yeah. A hundred percent. Speaker 1 (00:38:38): I know. And in fact, that reminds me of something you said to me ages ago because um, I actually got to know you when, uh, my husband and I are filmmakers. We did some early intervention stuff and I, I think it was, we were at the Air and Space Museum out in Chantilly and Liam was there. Speaker 2 (00:38:59): That was the second, that was the second time. Cause was at the ice cream shop the first time to watch trucks. Speaker 1 (00:39:02): Yes. And well you said to me there like, I think that Arlo might have been using um, a walker then. I don't remember. And I said something about how hard it is, but then I corrected myself because I was like, well Jamie has it so much harder. And I don't remember exactly what you said, but it was something like, we're all in this together. Don't even do that. Do you remember? Speaker 2 (00:39:23): You know, I get that a lot from people just because of how Liam presents. I mean you see him and you know that he's got some extreme medical issues and I'll get people, even typical people that will tell…  typical people, , um, people with typical kids, no disabilities. Typical even that word sometimes drives me crazy. Um, yeah, that'll say that. Oh but you do this, you know, and you do that. And I'm like, that is your child. If you are not constantly bitching and complaining to me, sure, come to me please. That is your child. That is your child. That's your heart right there. And you have different hardships that I might have that I might don't have. Like in school for instance, Liam does great in school and the schools are so great with him because he is on track to take us SOLs. You know, he uses communication device, gets good grades, behavior. (00:40:13): I don't have to deal with that with IEPs difficulties. Mm-hmm. , um, where a lot of parents that kids might not give the same feedback that Liam does, don't get the attention that Liam does. So I don't have that stress in my life. And you might have that stress. It's not, this is not, yes. This is not a competition. I hate that when people try, even in this world as parents, we try to one up uh, each other on who has it harder or just not complaining because someone else might be going through that. But we need to talk about these things. And if someone whose child might have a different type of disability does not understand if you're not constantly, and we all know, we all know the people that are always constantly woes me. Mm-hmm. , poor me, blah blah blah, constantly. I mean, we all go through that. (00:41:03): We all do. And there's nothing wrong with that. We are human and we all need people to pick each other up. But if someone's child or an adult's disability is different and they don't understand that you might need to vent about something, don't feel bad telling 'em that person's not, I shouldn't say they're not worth your time, but they need a little readjustment because we all we're, yes we are in this together. This is so hard. These are our kids, this is our heart. I mean, even people that have kids that are healthy all the time and then they might end up in the hospital for something at that moment. You know what, that is your heart. That is your child. And if you didn't feel bad or you didn't feel miserable, something's wrong. And as your friend, we should be able to talk. Now if your kid's get in a sore throat and you're going to the doctor's every week and saying, oh whoa is me. I feel so sad or I, I I can't deal, I cannot deal with that. And especially in our world, when our kids are going to the doctors so much, oh and we need to talk to each other when we need to vent. It's still hard. And there's certain things that are so easy for me with Liam, I'm trying to think of what they are. , (00:42:09): I mean he doesn't give me any attitude he has. Well okay, he does give me attitude. He thinks it's funny, but he, he can't act out obviously cuz he can't move the same way other people can. He's not running off. He gives me attitude about shows or if I don't change his shows fast enough. Or sometimes he knows I'm so tired and he just likes to poke at me for little things. And he has a noise he makes that's like nails on a chalkboard. I, but that's like the worst of my behavior with him. I don't have to deal with him running off. I don't have to deal with a child who might be violent. Um, I have, I have things obviously and everybody in this community has different things that we have to deal with. And Liam's never been hospitalized, knock on wood, since he's come home. Yes. My home can be like a hospital sometimes. Yes. I don't sleep, but many of us don't. And it's not if I can't take some of your burden off of you by you talking to me. Whereas sometime you might, I may need to talk to you. I mean, or then we're not all the don't, that should not be the case. That's not, I guess I'm, I'm telling you right now, as you already know, after so many years that person's not your friend. Speaker 1 (00:43:22): . , Speaker 2 (00:43:24): Sorry. But yes, we are all in this together. We should be at least we should be. And I find most people are, most of us are. Speaker 1 (00:43:32): No, you're right. And you helped me early on and you helped me see too, like when we talk about accessibility, you know, someone like Liam needs accessibility for his wheelchair. He needs accessibility for his learning and his I gaze equipment. And then we have people like my son who accessibility means a playground with fences because he does run off. You know, accessibility means locking ourselves into the house because he'll escape. You know, it's, it's different and every family is different and yeah, some, sometimes those could be those violent behaviors like yeah that that it's a different kind of struggle that that each of us face. And I think that the stress of it though is very similar. And I think that PTSD that we have and that ongoing grief, right for like every milestone that is joyous for most families with non-disabled kids brings with it a, a pretty significant level of grief for families like ours. Speaker 2 (00:44:40): It's funny cuz I was just texting with a friend yesterday about a cake for one of her son's birthdays. But she was telling me how she doesn't typically celebrate her kids' birthdays. Her oldest daughter has a lot of health issues and she's got two younger ones. One's just turning one and she's like, don't, don't judge me. I might be a bad mom. I don't typically celebrate 'em but I'm trying to be better. And I just let, I just stopped and said wait, hold up birthdays, milestones. Even when we celebrate them, for most of us it's like a knife through the heart. Mm-hmm and our milestones are different. But at the grief that can still come because everything that is different about our lives, his life is like, comes to the surface at that time. And I told her, I think this is pretty common. This is really common in our world And don't, and I've told her it's only gotten better for me as Leo's been like more laid backer. (00:45:32): I don't feel like I have to keep up with other people. Or he's like, eh, like his birthday is like let's go do smores with some friends outside and and I'm like this is beautiful. This is perfect. Mm, this is perfect. So relaxed with friends that are like family. So nice. So yeah, all the milestones or the times for me … it'll be at times I'm driving home cuz the PE teacher played sports love sports and I'll randomly drive by a soccer baseball field. Mm-hmm and it is like I got sucker punched, it comes, I could be having a great day and then I see it just for some reason at that time was, it doesn't happen often, but it just happens. Whereas just like I lost, I can't breathe and I'm not having a panic attack, but you just get sucker punched and adjust these little reminders that we deal with. That's just how different things are. I mean, I mean no one's owed health, no one has owed anything in this world. But when it's the person that you love the most and that you would do anything for, it hits so hard. Uh, such a reminder just how different things are. Speaker 1 (00:46:39): It is, it is one of the biggest struggles I've had and, and it's less so now, but is watching my nephews uh, and nieces. Right. Like those, those things that my brothers are going through with their kids and my husband's brothers. Yeah. It's like, oh yeah, that's different. And then the lack of understanding from family, you know, those people that have been such a close part of your life, your whole life understand it the least. And I think that's why I lean on the friends that have made like you and and some others that we mutually know. There's people really close to you who are your family of circumstance. Right. I lean so heavily and even though we don't always have time to talk to each other, as much as I hate social media, you know, that that's often our connection because our lives are so busy we can kind of follow each other and feel connected just by looking at pictures. Speaker 2 (00:47:35): Oh a hundred percent. So I have a nephew who is six months younger than Liam. Mm-hmm . It's pretty much he's doing everything that I had dreamed. The sports just being the active and it was, his birth was really, really hard cause that was one of the first kids after… Also and being a boy and then just watching him grow up just has been hard cuz it's that reminder. And he is just a sweet kid. Just a sweet boy, sweet boy. And some reason we've always, even as a baby, like we got along. Like I would hold him and he'd sometimes get annoyed with my mom and want me where I'd be like, what is going on? You know, I'm like this is so, so hard. Um, yeah. And my brother and sister-in-law are great. They're wonderful. My family obviously certain people can't know the depths and they're our friends that I can just pour my heart out about everything cuz they walk my shoes. (00:48:33): But my family is so lovely. Um, and they just, they've taken me at my own pace with things. I started recently started ADHD meds where I was able to talk to my brother and tell him for the first time just how hard it can be sometimes. And I feel, I do feel bad about that because his family is so beautiful. Like the oldest brother who um, I'm gonna brag a little, is a rower and gonna go to um, university of Penn to row. Yeah. And it is just Liam's favorite person in the world and is always so sweet to Liam. Um, my niece, the niece just so sweet. They came up last Christmas and it was just the best time. But also that's the first time I have thrown a ball with my nephew at 13 years old. Mm. Cause I was gonna be the high school coach and I was gonna take my son to all these sporting events and I was gonna do all these things with him. (00:49:29): I was gonna get off. Right. Um, and then seeing my nephew who is 13 doing ex, not exactly, but pretty much what I planned out was sports and doing things. And my mom going down there and watching sports. Liam hates sports. He hates it. He hates it. And he won't watch 'em with me. And it drives me crazy. Drives me crazy. So this past Christmas when they came up, I threw the ball with them and you know what, it was really nice. It was, it's hard. It's really hard. But being able to tell them …  my brother, how I felt before, not how I felt or just how hard it's been. And then to be like, okay Jamie, you can do this because you've let them know. And again, I am so blessed that when I told my brother, he's just like, I love you Jamie. (00:50:22): Um, we're here for you. I love you. Um, but I think of the times I've lost out with them and that also is, that's something I regret and where I want to now. I threw the ball and I wanna go see him play baseball. I, I, it's gonna be hard. And I told my brother that it's gonna be really hard and I'll probably cry the hell out the night before or the night after. But you know what, in that moment it's about my nephew and my relationship with him and being like, okay. Cause I think in the long run it's gonna be better for me instead of hiding in my little hole. And there are times I'm gonna hide in my hole. There are times I'm gonna hide in my hole cause we all need to put up boundaries. But I'm gonna do this. I'm determined to do this and to sit there and enjoy that and be thankful for what I have with Liam and to be super thankful. (00:51:13): Sometimes I hate being thankful be thankful for being able to have family that took me … I mean I've gone down there, I've visited, I've done things, I've thrown a football with my other nephew. But it was always easier cuz he was older. He came first and Liam adored him with the nephew. That was Liam's exact age. It was always so much harder. Yeah. But I'm, I'm gonna do it. I'm gonna do it before it's too late because I don't wanna regret that. And I need to, I I'm ready to. And I'm not saying for everybody that's not ready, especially in the first couple years … Yeah. Where everything is hard. It's, it's like you said grief. Grief is there throughout our whole life. Cause we did lose something. We lost our hopes and we lost our dreams and we're human. That's what I keep always saying, we're human It … there's nothing wrong with how we have felt. (00:52:04): It's just how we continuously to act on that. I might be mad at the world for this, but that's not my nephew's fault. That is not his fault. And of course if they were not so loving with Liam, it would be a lot harder. Yeah. I would be like, why would I waste my time? But that's not the case. I've got this amazing family. So, um, yeah, it's time and, and I think people will know when it's time. I, I'm sad it is 13 years later because while I can't do this with Liam, it felt so good to throw the baseball where I'm like, this is part of me that's been missing. And Liam loves basketball outside. Like we go around and we have to help him shoot and that's fun. But my sport growing up, playing with softball but getting out there and throwing that baseball, cause I haven't really thrown but actually going out there and playing with someone Liam's age thinking about what we could have been doing or what we quote unquote should have been doing. Cuz no, no we shouldn't be doing that. Like I said, it's not guaranteed. Nothing is guaranteed. Speaker 1 (00:53:01): I think it's amazing that you can talk to your brother and probably one day your nephew too, when he is old enough to understand, to explain why you needed time, Speaker 2 (00:53:11): You know, reality, me coming to my harsh reality with myself. Yeah. That he does take a lot of time, but you could make the time for one, one night down. You know, I don't really go away for many days, but you could, you have to make that time. And my, when we said I wanted to come. My nephew was just so sweet and excited about it. Or I'm like, yep, Jamie. It, it was the right thing. Speaker 1 (00:53:33): The feelings that we have are so complicated. You know, I, again, three children and Arlo's the oldest, so a 10 year old and an eight year old. There are things that they feel aren't fair and they don't understand. And, and I have to say, like we have conversations. I'm like, one day you'll understand. One day you'll understand why sometimes rules are different for him than they are for you. One day you'll, you know, one day. Right. And I think, I think that goes the same for cousins as well. Like they, they kind of get it and they kind of don't. And it's, it's just, you know, they probably get it more than we do or did. Speaker 2 (00:54:10): Yes, I have to say, because I do live with my parents and my parents give me so much support with Liam, but that has also taken away from so much time that my parents give to their other grandchildren. And they've got a bunch of 'em. I've got six siblings. I'm sure it's been hard on my siblings to not have that extra support. Just how understanding they have been of this situation and knowing that my mom and dad give so much to me and Liam and not taking that out on me or Liam. And that when my mom can help them where they're so grateful about that too, that right there from them blows my mind. Cause there was the longest time I felt guilty about that too. And I would tell them that and they'd be like, don't worry Jean. They'd blow my mind. And I'm just again, a blessed and I know how blessed I am from hearing about other people, about families that get upset or mad because grandparents are helping more with the child with say like someone like Liam than their kids. Overall, my family's been nothing but supportive. Speaker 1 (00:55:17): I think it's amazing and I think it's good that you're, you know, you're kind of pointing out the differences because you also have situations where family members don't even know how to deal with having, uh, grandchild, nephew, niece with a disability. So I think it all runs the gambit and our experiences are all different. I think it's beautiful that you're sharing how lucky your situation is in that regard. I also wanna make sure that we have time to transition Earlier. You're saying you, you know, you don't have any time for yourself. I think for a lot of us parents, primary caregivers, to a child with a disability who has a lot of needs, a lot of times we laugh at self-care because it's not really possible. Right? And if you do do it, you're sacrificing something else. And then you're dealing with that guilt and the guilt just eats away at you. (00:56:08): But Jamie, I have watched you over the years evolve from like milling wheat to all of these things. And so, you know, you gave us the background of, of where you were and adaptive PE which is amazing by the way, the, the, the way that life works out. That you have that background, but then you found something, didn't you, that that brought you joy. And I, I would like to hear about the evolution from how that started a little bit. And then I, you gotta, I mean the, the creations you're making, we are gonna plug what you're doing because you … people have to see the pictures. I am beside myself, so why don't, why don't I shut up and let you? Speaker 2 (00:56:52): So being home with Liam 24/7 not having constant help, it was petrifying to even shower sometimes. And I did not know hell the hell I was gonna keep doing this. I was like, how does anyone do this? How are they so calm? Is this just my child? Cause he hadn't been doing that at the hospital. So I needed to find something that I thought would be fun to do in the house, that would be mine. And I said, Hey, I'm, I got a book on bread and I'm gonna start baking bread. And I would just bake. And it turned into a way that, oh, I can thank people for their help. I mean, well and on everybody else for everything. I can't do much but I can bake, which I never did before. Liam. And I am not someone like with Liam, I pay attention to details. (00:57:34): But all my life it's been like, oh yeah, schoolwork, whatever. Mm-hmm. , okay, I'll get to this when I have to. But baking that fixation. Um, but it's like, okay, this is kind of fun because I would hold Liam at nighttime and we watched like all the Food Network cake decorating shows. I'm like, well why don't I try this? Yeah. That at that point, cake decorating didn't really come out too well. Um, I stuck with bread and I grew wheat one year and the growing the wheats real easy. It's just that you have to actually like take care of it. And I never got to it. And mice got into the garage and ate it. So I never actually ate the wheat. I grew surprised. I saw that I found milling flour cause it's supposed to be healthier and I wanted to do whole wheat and I needed something else. (00:58:15): So I start milling flour and making sourdough different types of breads. And then it just evolved into like cookies. So I stuck mostly with like cookies and little things or cupcakes. People seem to love my stuff. Teachers, friends, nurses, just everybody. Neighbor. My … my street, my neighbors are amazing too. Mm-hmm , um, always helping whenever they can. I have one neighbor that comes out every morning when Liam goes to school to say hi. And when he gets off the bus almost every day he'll come out and get Liam off and on the bus with us and other neighbors that used to. But Liam went to middle school so he gets home too early now where the three boys and their dad will come out every day to say hi, hi to Liam. Even if it's only two minutes and Liam doesn't wanna stay out every day. (00:58:58): Just little things like that where I'm like, oh, you know, I'm gonna bake for people. This is a great way. And everybody seemed to love it. There we go. And then I decided I was going to do a hike for Make-A-Wish as a fundraiser where I had to raise $10,000. How am I gonna get people to donate? You know? And I probably didn't have to bake, but I hate asking people for money. Same. Hate it. And even for such a great cause where people were thanking me for doing this. But I was like, okay, I'm gonna bake for people. If they donate, I'm gonna bake them something. Occasionally I'll smoke a cigar. So there was a cigar shop that would have a big um, crawfish boil. And I talked to the owner, if you're in Virginia and you like cigars up in Northern Virginia to Tobacology, go to there, they're wonderful. (00:59:41): I was like, can I put up a table and raise money for my hike for Make-A-Wish? And the owner was like, of course. So I just did a whole bunch of cookies and things and overall I raised more than my 10,000. I had to do that day. But just with donations of course people were drinking, having a great time, but I'm just baking for everybody. And then, you know, people asking to buy. One time I sold Thanksgiving pies and I was like, oh, so covid hit and I felt like, I'm sure you did. We were prepared for this. I mean people whining about being isolated. I'm like training all my life. But I was like, okay. So you know, I just was like, maybe I should start a home base bakery and guess what I did? I'm, and my first thought was, okay, I'm gonna sell. (01:00:21): I love to make macarons and like drop cookies. I want that to be my focus. And so that's what I started off with is pies. 2022 came around and it was March. One of my friends that I had known from CrossFit was like, I want you to make my kids birthday cakes. I mean I liked making cakes but I did not like decorating them. I like to bake. And I was like, okay, you know the business with the cookies, it's all doing fine. I'll give this a go. So I made her cakes and I like to think that my stuff tastes really good. I like to use quality ingredients, attention to detail. Okay. I don't like to think it does. If you don't like it then I'm just not for you. No, I'm and I made her cakes and I was like, okay, I think I might be able to do this. So I started taking cake orders that were just kind of basic. She let me do whatever designs and one of 'em was covered in fondant. I'm not as big of a fan of fondant and it was a hot mess fondant. But she was okay with it. Um, and it was wonderful cause she was actually a registered dietician and we bartered at that point for her to help me with my eating with cakes. Yeah, I know, right? That's Speaker 1 (01:01:19): Amazing. Speaker 2 (01:01:20): I know. Sweet, sweet person lover. And then I just kind of started doing more cakes. People were like, oh cakes. And that's just taken off where I'm like, this is kind of fun. I mean I love my macarons, I love my cookies. There's not really the money in the cookies, there's not really money in any of this really. I mean there's some, but with cakes you can add on decorations or trying to start to make like fondant figures. I'm still torn about covering cakes and fondant because fondant, because I do see it as a beautiful canvas. I just don't like the way it tastes as much. There is a very expensive brand from Europe that I might try cuz I am big on taste. Um, I do love like my buttercream cakes where everything is smooth, crisp, clean. Oh, Speaker 1 (01:02:05): And I have to pause you because just recently you posted a picture of a buttercream beer pouring cake, uh, that looked like it could be from “Is It Cake”? And it was buttercream and not fondant. I, oh my God. Speaker 2 (01:02:20): Eat buttercream. Yeah. I love that challenge of trying to work with buttercream and making it something that people might typically do in fondant because honestly most people don't like to eat fondant. Um, Speaker 1 (01:02:30): Can you explain, not everyone knows like okay, what they eat when they eat a cake. So quickly explain the difference between fondant and buttercream. Speaker 2 (01:02:37): So there's different types of buttercream first, but I'll, I'll use one that's more of a egg-based Swiss meringue. So it's not overly sweet like you might get at the um, grocery store. Softer, lighter and done, right, just delicious. And then fondant, usually you'll have buttercream under fondant or a ganache, but fondant is that really sweet. It can be hard after it sits out a while. Layer of just like sugar. If that's on top, that is great for making fancy fun cakes. Mm-hmm. it is good for that, but for eating it's not as good. And like say for weddings when you can get this white cake that's all fondant or do different things, it can be beautiful. But if you want something that's really tastes good, it isn't beautiful, you can, it can be done in buttercream, it can be. So that's what I enjoy. And I actually, I decided I would, my business has been doing well. (01:03:26): I decide

One of the hardest things families go through is when something seems wrong with their baby or child. When we envision becoming parents, the hopes and dreams we have usually do not include a disability. Socital norms focus so much on "healthy" babies that getting a diagnosis of intellectual or deveopmental disabilities shatters our preconceived notions of what being a parent is.  Then there are rare diagnoses. The ones that have no name. The ones that might require extensive testing. The ones that don't have networks of support like autism and Down syndrome do. So on top of the parenting curveball you've been thrown, you're left with even more questions and almost no peer support.  That's why we had to talk to Sarah Lepore. Sarah has a Master of Science in Nursing and is a Board Certified Neonatal Nurse Practitioner. She is also one of the founders and the Vice President of the Smith-Kingsmore Syndrome Foundation. And of course, she is a parent and a caregiver. She's going to tell us about how her own odyssey with her youngest son Charlie brought her to us.  The Odyssey: Parenting. Caregiving. Disability. Click here for more about the Center for Family Involvement's Genetic Navigator program.  For more about the Center for Family Involvement: https://centerforfamilyinvolvementblog.org For more about the diagnostic odyssey:  https://centerforfamilyinvolvementblog.org/2023/01/03/finding-your-way-in-a-diagnostic-odyssey/         TRANSCRIPT:  Welcome to The Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle, creator and host. The Odyssey Podcast will explore the unique journey we're sent on when a loved one has a disability. I started down that path 12 years ago when my first child was born with Down syndrome. Even though it's the most common chromosomal condition diagnosed in the United States, we still know so little. And at the time, as a new parent, I knew nothing. And so my journey has brought me here. Working with the Center for Family Involvement at VCUs, Partnership for People with Disabilities. We provide families with emotional and informational support. Our podcast digs deep into the joys and hardships we face. We're going to celebrate how amazing the odyssey of parenting, caregiving and disability is. But we're not gonna shy away from the tough stuff either. One of the hardest things families go through is the diagnosis itself. Parenting is portrayed a certain way in our world. So much focuses on the healthy baby. So if anything with a baby or child strays away from our society's notions of normal or healthy alarm bells go off. It shatters our preconceived notions of what being a parent is. Then there are rare diagnoses, the ones that have no name, the ones that might require extensive testing, the ones that don't have networks of support like autism and Down syndrome do. So, on top of the parenting curveball you've been thrown, you're left with even more questions and almost no peer support. There's help though. A new statewide effort is helping Virginians navigate and access genetic services. The Virginia Department of Health and the CFI have launched a genetic navigator program to provide support at no charge to families in collaboration with our regional genetics network. If you need support with genetics or anything else relating to this odyssey we're on, you can call or email our helpline. All of that information is in the show notes. You should also keep listening because today we're joined by Sarah Lepore. Sarah has a Master of Science in Nursing, and is a board certified neonatal nurse practitioner. She is also one of the founders and the vice president of the Smith-Kingsmore Syndrome Foundation. And of course, she is a parent and a caregiver. She's going to tell us about how her own Odyssey brought her here today. So welcome. I'm so excited to talk to you today. Sarah Lepore. We at the Center for Family Involvement, you know, our world revolves around parenting and caregiving and navigating that world and empowering folks to be able to do that as well as they can. And your story is so powerful because you have had to really pave the way. Can you just start us off, Sarah, and tell us a little bit about, I guess, your son, Charlie, and that journey? Yes, thanks for having me, Erin. Um, so, you know, I, Charlie was my third pregnancy, and, um, I was a nurse at the time, so, you know, I felt pretty in tune with what, how the pregnancy should be going. And early on, um, our O B G Y N was concerned about Charlie's head growth. All of my kids had big heads, um, but Charlie's was a little larger than the others, and he was following that real closely. And, you know, he, when he was born, um, everything looked good besides his head being big, otherwise, he, you know, was a great normal baby. Happy baby fed well, slept well. Um, we didn't really have any concerns until about two months. Um, when, you know, you start to expect some of those infant milestones and they just weren't coming. He wasn't, um, reaching for toys. He wasn't really, um, lifting his head up. He had severe head lag. Um, and so that's when I started reaching out to my pediatrician, um, and talking to her more about, you know, could this, could there be something wrong with Charlie? Um, you know, of course, like most pediatricians would to a mom at, uh, two to three months of age, they might say, let's just wait. So we did wait a little bit until about between six to eight months where, um, we did notice that he was just not hitting milestones and getting further and further behind his peers. Um, so with the help of our pediatrician, um, she was able to get us in at U V A, um, through the developmental, um, pediatrician group, which I feel really lucky that at that point in time we, you know, we only had about a, a three to six month wait. I can't remember the exact wait, but it was, you know, it's felt long, but I know right now the waits can be upwards of a year. Um, so, you know, we got in relatively early and started our journey and, um, you know, we started up with the developmental pediatrician. Sarah, I'm gonna interrupt you actually really quickly because I think a lot of times people don't actually know. Can you explain what the difference is between a pediatrician and a developmental pediatrician? Yeah, absolutely. So a developmental pediatrician, um, is just that they are, they follow, um, infants through adolescents through their development. So their, um, emotional development, their physical developments, um, and, uh, they support your pediatrician. Um, where the pediatrician, um, is more for well sick visits. Um, they, the pediatrician does look at your developmental milestones also, but they would refer out to a developmental pediatricians if there was concern for a baby or child not meeting milestones, um, at the, the time that the line that the American Academy of Pediatrics has published. Um, so your developmental, um, is kind of a gateway. I I consider them really in those beginning stages of, um, looking for a diagnosis, your gateway, um, doctor to help you, um, connect with other, um, specialists, other services, if your child needs to, um, see other services, especially if it's kind of this gray, like we're not meeting milestones, but, you know, we don't have anything else specific. Um, it's, it's different when you already have like some, some other symptom that's really clear. Like if you have seizures, you might go the route of a neurologist, but if you don't have any real specific symptoms other than milestones, going to the developmental pediatrician is usually the the first place you would be sent. And I, I'm curious too, um, and again, I wanna get back to your story, but it's so hard to find a developmental pediatrician and because you're on this journey and because we're talking about this now, I mean, what do you recommend someone do if they can't find a developmental pediatrician? Or if the wait is indeed a year and you're just feeling really lost, um, what do you think the best route is to go? Well, Erin, I think it really depends on the symptoms that your child is experiencing. Um, but you know, first and foremost, get on the wait list, get that appointment, and then, you know, seek out a community. And there's a lot of social media out there that can help us connect to a community of other parents who are going through the same thing. Families are just wanting to help each other. Um, so I think in the meantime, while you're waiting, it's really good to crowdsource connect with other parents who are experiencing some of the same similarities you're experiencing. Yeah, and I have to say, I have to add, um, because I, I think our sons are my son's 12. And your son's also 11. 11, yeah. Um, and my son has Down syndrome and a lot of other, uh, stuff to go along with it. And not only do you get on those waiting lists, but I would highly recommend staying with those doctors and continuously seeing them annually or biannually, because even if it seems like you don't need that doctor something, especially when you have complex medical needs, something can pop up later and you don't wanna have to get back on the end of that waiting list. That's a really good point. In fact, U v a if you, um, un established care if, if you're seeing developmental pediatricians at uva, if you stablish care, which is somewhere greater than a year because they expect a yearly visit, I think depending on your diagnosis, it may be three years. I'm not a hundred percent sure on that. But if you end up lapsing and and not going, then you have to start over and reestablished care and those wait lists are, uh, right now, I think eight months to 12 months long. So, um, definitely wanna continue to go and, and there's been times where we've gone and it's like, I don't really need to go, I don't, like there's not, I'm not really gonna gain anything from it. And so you walk this line, it's like, do I wanna put my child through another visit? But, um, you know, developmental pediatricians are usually, they're, you're gonna do a lot more talking and they're real engaging. I mean, our experience has been wonderful. We see, we've seen quite a few at U V A, um, our, our current one is Dr. Frazier, um, and she is really engaging with my son. Um, she, you know, really, um, connects with him. So it's, the appointments aren't, aren't, um, too traumatizing for him at all. Um, but keeping those up with those appointments are really important cuz they have been hugely impactful for me when it comes time for things like writing IEPs. Absolutely. And I find too, if, if your child has a condition where certain things are common, so for instance, with Down Syndrome, it's common to have thyroid issues, even if your child doesn't have set issues at that time, perhaps seeing an endocrinologist annually, if those issues crop up, you can be on MyChart and message and do all the things you need to do if something hits the fan. Um, but now we're going on this huge tangent and I wanna get back to Charlie and your story. Thanks. So please start, start from where we left off. All right. So we, we got in with our developmental pediatrician and he recommended, um, he offered, do we wanna go the route of genetic testing. Um, so it wasn't like, what, you know, you must do it, it was offered to families, which is really important. Genetic testing is something that families should be consented to. Um, it shouldn't, you know, some people don't wanna go that route and that's, you know, totally their choice. You know, I, as a, um, a nurse at this point, I was, um, I was still a nurse. I was in grad school getting, um, my master's, um, and I, um, really wanted to find out all the reasons why like I needed, I needed to know the answers. So we did go the route of the geneticists and we had our first appointment about four months later. Charlie had a microarray done, a chromosomal microarray. And the first, um, test that result we got back from the chromosomal microarray showed that Charlie had a micro deletion of a gene called a U T S two or OTs two. Um, and that gene was, was recently, uh, discovered and there wasn't a lot written about it, but over the course of a couple of months, paper started popping up. And as I'm reading, um, about this, um, genetic syndrome, I'm finding that almost all of the cases RF kids with small heads or microcephaly and Charlie had macrocephaly or a large head knowing that that's kind of a major difference in development. I wanted to question, I questioned like, maybe this isn't the right diagnosis. So I did some research and I reached out to some of the, um, doctors and researchers that have written articles on OS two. I shared with them Charlie's genetic diagnosis, um, sheet from MyChart from, um, from our hospital. And, um, you know, waited. I emailed and waited to see if I'd get any responses. And sure enough I had two, um, experts and s to respond back to me. And they said that they would recommend Charlie getting whole exome sequencing, that they did not feel that, um, s two really fit Charlie, um, and that we should continue to seek out a different diagnosis. Um, meanwhile, I, um, with another, um, parent, I'd started a Facebook group frauds too, because there was nothing out there. And again, I wanted to connect with people. Um, I had a lot of friends, uh, a couple of friends, not a lot of, couple of friends that had kids with Down syndrome and I had attended some of their, um, community events and the, like, it was just amazing to me to see this community come together. Um, and, you know, we always, we wanted to participate because of that feeling, but like, I still, you know, that wasn't Charlie's diagnosis. So finding our people was really important to me. Um, and so we started this group, um, and, uh, that group has really grown and since, um, over the years I've kind of transferred the, um, leadership onto other families. Um, and we continued our, our, um, diagnostic odyssey to try to find, uh, the right diagnosis to fit Charlie. At the time, whole exm sequencing was not being offered. It was like in the beginning research stage, there were places across the country that were starting to do it. And you know, as I'm trying to figure out can we get this done, I'm hearing back from our team at UVA that they're not offering it yet, and then they're only offering it if insurance is covering it. And at that time, our insurance was not covering it. So again, I went out on to social media to try to see what I could do and just reaching out to other parents across the country on what their experience has been. And I found out that, um, the lab, gene Dx was running these tests for, um, not free, but they were, um, at least trying to bill your insurance and then they were rebilling, um, and kind of running, like doing the fight for you so you didn't have to do all of that. And when it came down to it, by the time we finally got it done, our insurance, um, and Gene DX ended up covering it. So we didn't have any out-of-pocket at the time. It was a $28,000 test. Um, it's, it's much more affordable now, but it's still, it's not, um, free, um, to everybody. And, uh, and so, you know, accessibility, um, was a big issue for us and it took over a year and a half to get the right testing done for Charlie. But then we got the whole XM sequencing and it came back normal. And so of course I was a little bit disappointed, you know, we went through all of this and we get this test that's normal. But when I say normal, what it had was a, uh, variant on the gene mTOR that was unknown, unknown significance. So what I was told is it's normal. You're gonna, there's always gonna be a gene of unknown significance with a variant that happens on everybody if normal. Okay. I ended up reaching out to, um, the same doctors that I had talked to, um, previously about OTs two syndrome, just to kind of pick their brain on everything. And at the exact same time that this was going on in the background, another Dr. Lori Smith, discovered a child who had a variant on mTOR, and she actually published a paper on it. Her and her colleague Dr. Kingsmore, they described in the literature a mutation of the gene mTOR that, um, caused some symptoms that were so similar to Charlie as this information is all kind of coming together. Our geneticists at the time reached out and said, Hey, we're gonna ask the lab to rerun it, rerun your test. Which when Gene DX reruns your, your whole exome sequencing, they don't actually need another blood sample. They can just rerun it against their database. And when they rerun it against their database, we again got back variant of unknown significance. All right? So we've now had it done twice. There's this variant of unknown significance. There's this paper that's been written about Smith Kingsmore syndrome, we yet to find anything out about this. And I thought, okay, I, I kind of had closed the book. I was like, all right, Charlie's just unique. He's rare. I, I'm not sure what we're gonna do, but I'm just gonna move forward with what he needs, which is the therapies to help him meet the milestones that he's, that he's able to achieve. And to just get past that point of grieving the like why and what, and move forward with, okay, we have to have action to make things better. Um, so we kind of threw ourselves into therapy. We were already doing a bunch of therapy and just rolled with what, what we needed to do to, to really help Charlie be the best that he could be. I'm gonna have you pause there because you mentioned the grieving, right? And you know so much here about all the things and, and so many families like ours, like, we have to go into this mode where it's research and advocacy and research and advocacy and fighting for this and insurance and paperwork, and it's a full-time job. So I wanna pause and I wanna know at this point, you know, you are going through all of these things and so how are you at this time and how is Charlie at this time? I mean, at this point where you are in the story, can you tell us how long the journey's been and how you're holding up? And I wanna know about motherhood in these conditions because I know for me, having my oldest have a disability and having two younger siblings, we are robbed of so many experiences being parents that it, it just sometimes feels unfair and there are a lot of emotions that I feel like we brush off. So I wanna know where you were at this time emotionally and where your family was and how you all got through this while you were doing all these things on top of being a mother, on top of being a professional. How were you? Um, well, you know, it was, it was a difficult time for me for sure, and I was in therapy. Um, I, that was one of the things that I did for myself to kind of work through that grieving process of, um, you know, grieving what, um, what I expected out of the pregnancy, what I expected out of my newborn, a period. And that, that really helped me. And I, I worked through, um, with my therapist, I worked through, um, that grieving process. Um, and, you know, I just started trying to take better care of myself and also taking, you know, really kind of putting myself, really putting everything I can into helping Charlie. And by doing that, I, that actually ended up kind of being like therapy for me because I, I was able to put aside the, we can't figure out the why, but I actually can do something to, to help. So this was about 2015 was when we had the second whole exm sequencing result come back as variant of unknown significance. Charlie was four, almost five years old, he was in school. We were seeking out, trying to find a diagnosis, a school diagnosis for him where he could get the services that he needed. So we went back to the developmental pediatrician with some of the concerns that his teacher and I had, I really was seeking, you know, is, is seeking out, is this autism, is Charlie, is he autistic? And, you know, our first, um, visit, our doctors weren't too sure, but after about a year, you know, his, his signs of autism really did start to show. And so he was diagnosed with autism and that really helped us be able to work with a specific i e p team at, at his school and get him the services that he needed to. Um, but you're right, Erin, it, it was like a full-time job and you know, they're doing that on top of working full-time. At this point I had graduated, I was a nurse working as a nurse practitioner, really managing my child's day-to-day life. And this therapy's on top of that. There was a time period, o o over about two and a half years was when Charlie was getting 20 hours of therapy on top of school. So outside of his school hours, 20 hours a week of therapy. You Serious? Yes. So we, How, how did you even fit that? Cuz I thought a few days of week were a lot like how did you fit that into your lives? So every day he had speech, P t O t music therapy. He did the hippo, uh, therapy, horseback riding. And then on top of that we had a b a. And so our a b a therapist was here, you know, for hours in the afternoon and evening. And it really, um, for us, ABA was the right choice then. It, it's not the right choice for every family. And you know, I totally respect that. But it worked. We had a really wonderful, um, ABA specialist and it, she connected us and with Charlie and really helped me as a parent manage some of his, his behavioral challenges in the home, um, so that I could be a better parent to him. Uh, I got just as much out of it as he did so did, so did my husband. It was really, um, a wonderful experience for us. So yeah, I mean that was kind of where we were at. We were like, all right, well we have to just really try to help Charlie be the best that he can be. Um, and Charlie was such a trooper and he, like, he really worked really hard in therapy. But, you know, my mama heart was still very sad because we, he, he mis he ended up trading out play dates for therapy dates and, you know, over time not having those play dates , I realize that now, like he, you know, he doesn't have the, the same play skills and is that because we ended up having to do all this therapy? You know, I try not to blame myself because I do think we've done the best that we can do given the circumstances, but you know, it's really hard as a parent to, to not second guess like, did we do too much? Did we not give him like the normal things that he could do? And so, you know, he, I I still feel like we did the best we can, but it was, it's been a journey that's for sure. And wouldn't you say, I mean, in my experience, because it wasn't 20 hours of therapy a week, but I did find myself with my son taking his sibling to go to Aqua therapy and to go to all these speech therapy and I, I just, I mean I found myself getting angry, but then I also think about societal constructs and the medical constructs where really these therapies, and that's the beauty of early intervention, should be coming to the playgrounds, to the cafes. Um, so the therapists can work with our children in these settings that are natural instead of a clinic or even in the home all the time. Um, and helping facilitate some of the conversations and playing I, which I mean, again, our societal constructs in our insurance system does not really allow for that. Cuz you have to fit so many people into a day in order to get paid. But I just feel like it's, it's not a failing on us as parents. It is a failing on the way that our system is set up and our poor kids. There's this complex that they have to be fixed and um, I, I don't know, I just find it really difficult that in, in this day and age we haven't found a way to make it easier for them to get what they need but also be a child. I totally agree with you on that. We had a physical therapist, um, Charlie's long-term physical therapist in through early intervention and we stayed with her private um, until he was eight and a half. She would take him to the park. She, we would go to the park and she would try to, you know, if a child would come over she would definitely try to do that. But that was far and few between like that just didn't happen very often. Sarah we're going all over the place here. So let's go back to the testing and where you were with Charlie. I think you said it was 2015? Yes. So you know, like I said, we had kind of moved on from the why and what, and we're just focusing on what we could do to help. Um, and we were sticking with our appointments, you know, our yearly genetic geneticist appointment, our yearly developmental pediatrician appointment. And we just happened to be super lucky that it's very interesting story. But one of the specialists that I had reached out to for OS too emailed me instead of the UVA a geneticist about her paper that she was writing on OS two. And so I forwarded it to our U V A geneticist at the time and she said, let's, um, you know what, it's been a while. Let's see if Gene DX will re-look at Charlie's whole exome sequencing. And this was 2018 and a couple months went by, I didn't hear anything and then I get a phone call, the uh, genetic counselor said, Charlie's whole exome sequencing test has been changed to, from a variant of unknown significance to a variant of causing pathological disease. He sent me the report and there was reference to Smith Kingsmore syndrome, which I had at that point. I had already read the article that had been published, um, which it was, you know, only published a couple years prior and it kind of matched Charlie, but still there were some differences. So, you know, I was hesitant to like fully accept the diagnosis and wanted to continue to reach out and see what we could do. So, um, like I had to do from the beginning, I continued to reach out to these specialists that I had met and I mean I was lucky cuz I know that families have emailed specialists before and that they don't respond because they're so busy. I get it. They have their own patient population or the emails just don't get through to them because in, you know, big hospital institutions, it's hard sometimes to reach them. And I think we just got really lucky. And again, this doctor that we were, um, that had been corresponding with in Seattle, she said, yes, this Charlie does fit that and there's a lot of new information coming out about uropathies, which S K S Smith Kingsmore syndrome is an M enteropathy. So, you know, I think you're in the right, What is an M … what is that? And then no, it's ok. And actually I you know, I think it would help if you told us some of, uh, the symptoms as well. Um, Sure. So, um, Charlie has a variant on the gene mTOR. So the gene mTOR is on a pathway that helps our cells and our body communicate if there's a variant, it can cause the cells to change and grow differently, sometimes rapidly. Um, and so because of that, it can cause different symptoms like large head size, large brain size seizures, um, global developmental delay, autism intellectual delay, and there's some other like hypotonia, focal cortical dysplasia. And it can cause some pretty significant changes in your M R I. And I haven't mentioned this to this point, but Charlie had had an M r I already, so we had some information about his, um, brain abnormalities that looking at it at that early prior to having the diagnosis of sks, we were told, well, there's no genetic picture that matches this yet. And that's the thing about genetics is we got told a lot of it hasn't caught up with you yet. Like there may be something later on, you know, and I think there's a lot of families that kind of sit in that window of waiting to, for the diagnosis to be discovered are like, people are hesitant to say it's this one person has this thing. Like they wanna see that there are multiple people having the same symptoms with this genetic variant. So we, we had our diagnosis, I had a doctor that confirmed it, and then I went back to social media trying to find people that I could connect to and I did. And um, I found a Facebook group. There was like 30 people on it and I started reading and I started sobbing. I mean that was like the, the pivotal point for us. It was like these were our people, these, these families are going through the exact same thing we're going through. Um, our, the pictures, I was like blown away. Like my son looks like these kids, like they could be siblings, um, even with different hair color, they had so many similarities and um, you know, it just like, I was happy and sad and had so many emotions. Um, but then the balls just kept rolling. Like people were motivated. We found that there were doctors that were motivated and we were able to connect with these specialists that, um, were outside of our state. And luckily we were able to travel and, and meet these doctors and other families who really wanted to start a, uh, foundation so that we can raise awareness of our small rare disease. Because living the life of, of trying to get a diagnosis for an ultra rare disease is such a long, painful journey. And if we can help others get that diagnosis earlier, then we're cutting years off of the, of that pain for them. And now we know there are babies that are getting diagnosed because there's more literature about s K s. I like to think that our foundation has had a part to do with that because we've been pushing to put information out there about Smith-Kingsmore syndrome. It, it feels like, had there been more early on with Charlie, like with the larger head size in and of itself and what you saw, had that been associated then, do you, I mean, little things like that could have cut that journey for you down so much? No, Absolutely. And I think, I think now in, in 2023, um, it is because we, we know like genetics has already advanced so much in just this short period of time that there are gene panels that have like seizure and large head and they're looking at, you know, specific diagnoses that match that. So if you present, if your child presents with a specific list of symptoms, then instead of having to get this whole exome sequencing approved, they can do just a specific panel which is cost efficient and helps really kind of hone in on the diagnosis. So I think we are getting to the point where it's getting faster, but there are so many of us that it took so long to get there. And there's still, I know there's still people out there that are living this journey where heir child's diagnosis has not been discovered yet. There are lots of families that are on this undiagnosed journey and hopefully as more time goes on, you know, they'll be less and less. But I think we're gonna be sitting in a, in a time period where genetics is gonna rapidly change. I mean, yeah, I wrote this article and we'll put a link in our, in our stuff for y'all that are listening, um, interviewing you and some doctors and, and I mean it is, it's changing rapidly and it's advancing rapidly, but it's still, you know, for families that are in it, it feels like a snail’s pace. And I can't help but think, you know, there's so much more information now. But what about those families who don't have the privilege that you and I have who are working two jobs who English is not their first language, you know, who are single parents and just don't have the health insurance or the time or the resources to do the research. Is there anything for them? Like is there support for them and, and how do we do better getting this information out to those who, who don't even know where to start looking? You know, Erin, these are such great questions and I know that there's some work, um, that the, that your center's working on that V C U is working on that are hopefully gonna be helping lots of families in Virginia. I think, you know, social media, I mean, is is definitely a way to help families connect, but we're still kind of missing out on, on ways to really reach these families that wouldn't even go to the doctor to begin with, to, to kind of get the ball rolling and, you know, I think reaching out to or have like having our, our pediatricians be able to have a way to get these families to connect to other families. You know, whether like, especially like not even thinking of a specific diagnosis, but like if our, if our pediatricians are concerned that there may be abnormal or development of a, a child, like connecting them to another family so that they have support, um, because those of us that have been through it, like we wanna support other people, being able to do that in some way, shape or form, I think would be, uh, amazing. But right now, um, I'm not really sure of all the ways that that, I mean, I don't think there's a lot, that lot going on besides the work that you guys are, are getting ready to start, which I think is gonna be incredible for Virginia. Well, yeah, so the Center for Family Involvement, not only do we have a family navigator program that helps families, um, we match families with similar conditions. So if you have a family who has someone with Down syndrome, a child with Down syndrome, we find a parent through our volunteer program to match who you can talk to. But the beauty of it is we have so many different rare conditions, right? But also cultural differences. And we, we take great effort to find people to find their people, not just with whatever disorder they may be dealing with, but whatever cultural sensitivities that go along with it. And then yes, we have just launched, um, a genetic navigator program, um, which does something similar but with these specific questions about genetics. But, you know, it, it is, it is one of those things where we're there we have help and uh, it's, it's that not everyone knows where to look. And I think the beautiful thing, you know, we're talking about S K S and we're talking about the Center for Family Involvement, and we can talk about autism and Down syndrome, but I always stress to people that we don't silo ourselves because disability is, is still just such a small minority when you look at our country and our world, right? And developmental and intellectual disabilities are even smaller. And then when you look at rare diseases, according to the National Human Genome Research Institute, there are around 350 million people on earth with rare disorders. So this is a disorder or condition with fewer than 200,000 people diagnosed. And about 80% of these rare disorders are genetic in origin, and 95% of them don't even have a single treatment authorized and approved by the F D A, right? So when we're talking about these things that we're dealing with, it's great to find our people. And I do like, you know, like I'm sure with S K S, you, you have this, these niches to talk about. And whenever I meet a parent of someone with Down syndrome or a person with Down syndrome, there are certain things we just know about because it's so common within the condition. But when we talk about the bigger movement in helping families and, and helping understand rare disorders, uh, I mean it's, I I I cannot stress how important it's that we work together. That's why I love having this conversation with you and learning so much more. Yes, I think it's so important that we are supporting each other, um, regardless of what the, our child's diagnosis is because we're going to experience the same challenges, access to medical care, access to specialists, how to write that I E P for certain challenges that your child is going through, how to navigate the transition time period when your child, um, is becoming an adult. So there's so many challenges that we're going to experience that have really nothing to do with our specific diagnosis, but do have to do with those larger symptoms that our, our children's share. And so together, you know, we can really kind of make a bigger impact, not only with our own children, but with helping others. I really think it's important to give back to those that are starting off the journey, not just how to find the diagnosis, but how to access things in their community that can help their, their child, help their family to be able to, you know, have just a more quality, better quality of life. Absolutely. And you know, something you said earlier really struck me because it's so common with so many families, is that you have to have a diagnosis to, you know, for your I E P, which is just, it's such a ridiculous thing that schools put upon families. A developmental delay is a developmental delay. We don't need to categorize it into a certain diagnosis or ID or DED or whatever, ed. I mean, it's, it's categorizing and labeling is doing such a disservice if we could just treat the student and not worry about, uh, uh, it just, uh, it's baffling individualized education plan. Look at the individual, the diagnosis should have nothing to do with it. Well, Erin, I think we could have a whole other podcast about IEPs, , I think you're right. And the challenges that we face in, in, in Virginia and probably in every state, but yes, I I we have been fighting that battle and it's, it is very true. Like the labels do not really define our children. Putting the resources together to help each child meet their milestones and be able to access their curriculum and access their surroundings and be a child is what really the focus should be on. Hmm, Absolutely. And you're right. I, I could dive into this and that is a whole wormhole that I'm gonna keep closed because we need to, uh, we need to do an entire podcast on that. Sarah's the, the thing that I see in my family and, and some of the struggles I see have nothing to do with my son with a disability. It just has to do with everything that goes along with it. Like we've been talking and my son has, or so my son, I have three children and, and Arlo, my oldest has two younger siblings. And I see how all of the things that I have to do to support him, impact them, and they roll with it so easily because it's just part of their life. But sometimes they do feel it. And I think you kind of have the opposite, right? You have two older children. I mean, how has that journey been for them? Like, how has it been difficult? Are they understanding, are they supportive? What's that been like as a whole family? I mean it's, you know, when you have a, a child that is, that has struggles with either developmental delay or intellectual impairment, autism, any, any diagnosis like that, it's a family affair no matter what. Right? So I think having a younger child when therapy started, um, you know, he was an early intervention. So we, I did everything during the day while my kids were at school. But then as he aged out of early intervention and went into the public school system, everything became after school. And so it was very taxing on everybody. We had to divide and conquer often, um, where one parent is taking one child to do their extracurriculars and the other parent is doing the therapies. And I had three kids. So my middle son Brady often went with me and Charlie to do the therapies. So he has really kind of been living the life of, um, of that, um, right next to Charlie, like the longest where my oldest older son was, is five and a half years older. So he kind of already was, you know, on the path of what sports he was into. And, and so we, we, you know, divided and conquered. We luckily, um, had grandparents that live in the area, so they also were able to help. But there were times where we had no help and it was just us. And that becomes a true family affair. I definitely recommend looking to your therapy centers, to your pediatricians to find sibling classes. You know, we did those over the years. Both of my kids participated and they were always really helpful. Empathy is is something that comes from within, but also sometimes kids need to be taught a little bit about empathy and going to those classes, I found that my kids came back like refreshed and more, had more of an understanding and also making sure that they had time for themselves too. And even if that was, once I put Charlie to bed, I did movie night with just my older two, cuz that was all we could manage to, to pull off. I make sure that we have time for each child, but that's, it's an exhausting task as a parent to, to do that. You know, I definitely feel for, for all parents that are going through that, It's really hard. I find myself struggling and realizing that I need to like find someone to be with my oldest who's 12, who should be able to stay home alone so I can spend time with the other two. Sometimes he, my oldest just will not do something. And it, it really, like, you can be out like exploring a town and looking at shops and he'll just refuse and wanna go home and there is literally no stopping him. And so, as hard as it is to like, not have him included, sometimes it's the best thing to do for the other two to experience things that they wanna do. And it's just, it's such an inner conflict dealing with this all the time. And especially when, like, we don't have family nearest, we have no supports. Every support we have is hired or asking a friend to do a favor that I might not be able to return. So I don't wanna ask them. Yes, I to I totally understand that. And it's, it, you know, anything that we do in this house after seven o'clock is not with Charlie because that is the, that's the bedtime for him. And if we vary from that bedtime, then we do not have the best version of Charlie. And, and no, it's not fun for anybody. Um, so Erin, we, that happens to us a lot also, and there's a lot of inner conflict as a parent because you, you know, and I, I try not to, um, look at other families who are experiencing those things as a whole and rec and, and then, you know, you realize that you're not able to do that as a whole. Um, because I don't wanna put myself back in that cycle of grief, but it's very easy to, to be able to compare. It really is. And I love that you said that, Sarah. I love that. You know, you just don't compare because it, it can be hard, especially like hanging out with my brothers and their kids, and it's just seeing how different their life is just by some chromosomes, you know, it's, it's really interesting. But yes, the but there are things that they'll never get to experience. There's joys and struggles that are so unique that they'll never know. And I guess that's the beauty of finding your people, right? Because you can share with them. And I wanted to ask you too before we run out of time, because I think what is unique about a lot of groups that we find, and what I heard when I spoke with someone that works with your organization is how much the doctors learn from parents like us because we are so busy researching because we have to, because there is no research out there on some of the conditions that people face. So as parents, we are as much a part of the medical teams in many cases as, as the doctors. I mean, has that been your experience? 100%. First of all, my advice to other families are if you are not being treated at that level with the, the team that you're working with, seek another team. Especially when you're on the journey to a diagnosis, you need to be heard and you need to be respected. And you know, people are human. You're not always gonna have that path. So if you're not finding that path, I recommend trying to seek another team, seek another specialist if you can, because you definitely need to be heard and respected in order to help your child get to that diagnosis. I, I mean, I've l I've learned from so many of medical professionals over the years, not just about Charlie's diagnosis, but others. And many times the ones that are, that stick out to me are the ones that always say, I learned from the families. The families are teaching me along the way. Um, you want that partnership, that partnership is so important. You want to feel that they really do understand and and want to help you. Yeah. It's, it's amazing to me the relationships that you form with doctors and nurses and other professionals because of this. And I, I had to like, I was someone who never needed to see a doctor and then all of a sudden my first child stopped moving and emergency c-section and, and like my whole world flipped upside down. Right? And now I'm like talking to doctors all the time and I've learned so much. They're not like on this pedestal that we put them on. And one of the most important things I think, that I learned from one of my son's specialists is that it's a lot of guesswork and you don't realize that like they're just throwing things against the wall hoping it helps. My son has immunology stuff going on that's so complex and not understood that it's not even an official name for it. Right. And one of the doctors I worked with, I was like, can I read something? I wanna understand what these blood levels mean. He's like, there's no research to read on this. No one's been able to even see this before. This is first. So yeah, if you have a doctor that's dismissing something you're saying and doesn't wanna listen and, and doesn't take your concerns seriously, find a new one. Absolutely. But easier said than done, especially if you have insurance that dictates exactly who you're supposed to go to or, um, you have language barriers so you don't even understand how to get, get to the, the other, um, specialists that could possibly see your child or see you. It's definitely part of the journey and it's hard, but I think that's where family supports groups can come into play. Or you know, what the Genetic Navigator program where you have, you know, if somebody is let, if somebody tells me in the beginning their journey that they're struggling, even with like early intervention therapists, I always say, if it's not a good fit for you, then it's not gonna be a good fit for your child. Like, you gotta make sure that you feel good about it because you want to learn from them and you want them to help your child. So I always try to give that advice to families when I'm paired up with, with somebody who's starting a, a new journey like this. I think that's why it's so important to find a group to get your ideas and push them off on somebody else. So whether it's the Center for Family Involvement or like you said, you could, I mean, our communities, our individual communities are so accepting. If you have something going on and you don't know what it is, you will be welcomed. People will bend over backwards to help answer your questions. I've found that over and over again. They just wanna help because they know how hard it is. It's just reaching out. Yeah, absolutely. Together we're stronger. Right? Together we're stronger. That is so spot on and the perfect way to end this. But before we do, Sarah, is there anything that you'd like to add? No, I think, you know, this is, this is a really important topic, uh, to put out there so that people know, um, how to get started, um, what somebody else has gone through and, um, what to do when you're on this journey. So I really appreciate all that you're doing to kind of highlight and raise awareness to, um, you know, walking this diagnostic odyssey to getting a genetic diagnosis, especially of rare diseases. Well, thank you for your work in helping people find out, I mean, patient registries and working with specialists and having medical professionals be a part of your organization. I mean, this is just, this is just so important and, and it's so inspiring, um, your work. Thank you. Well, thank you very much. It's, you know, it's really important to me that, you know, we raise awareness not just for s k s but for, um, for rare disease in general and for anybody being going through this journey so that we can kind of help them and shed some light on what we've gone through. Excellent. Thank you Sarah. And thank you listeners for joining us. We're just getting started and cannot wait to bring you more. Please rate, review and share and tell us what you wanna hear about. We've got tons of topics in the pipeline and are always welcome to ideas. You are listening to The Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle. We'll talk soon.