Episode 111: Journaling For Mindfulness With Guest Josephine Atluri
In this episode, Josephine Atluri discusses using journaling to help with mindfulness and parenting. She discussed ways to engage in mindfulness along with your child, as well as ways to communicate in a mindful way with your child. She provides examples for when mindfulness worked in parenting for her. Discussed the importance of examining expectations as a parent and to set intentions in your interactions with your children. Otherwise, you might be placing too much your child and placing extra demands on them. Use intentions to let things flow, rather than fighting obstacles to make things happen. It allows you to let unhelpful thoughts go. You can engage in emotional awareness by spending time being mindful just being aware of what you are doing and feeling. You can always set an alarm to check in with your body and your emotions. Then, give yourself whatever you need in the moment to care for yourself. Affirmations are really helpful to improve mood and self-esteem. It is a way of giving yourself extra love and caring. Document triggers throughout the week. This recognition of the patterns helps you to put strategies in place to avoid the situation or better cope with them in order to minimize anger or stress. You can better use stress management techniques and using what works for you. With practice, you can recognize other triggers more easily. Letting go and letting go of control is useful to allow the child to be who they are and to be able to enjoy therm. They will be heard and supported and that they were given what they needed in the moment. Take in the joy of others. Try to allow yourself to experience joy each day, without participating in it. Watch the happiness of your children. Help others. Enjoy a self-care moment.
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The Mindfulness Journal For Parents
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Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 110: Updates, Crises, and Overwhelm
In this episode, Jessica gives updates on her life and the life of her family. She discusses updates on her health conditions and recent surgery, crazy stressors, and mental health difficulties that accompany autism. She discusses how hard it is to get good medical care and how impossible it is to get adequate care for children with special needs. Jessica lays out how she obtained help for Benji’s mental health crisis in Virginia. Spoiler alert, it was haaaaaaard!
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Chronicles of Zazzles: Connective Tissue Issues
Bendy Wendy and The Almost Invisible Genetic Syndrome
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Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 109: Executive Functioning Tips From ADHD Coaching With Dr. Norrine Russell
In this episode, Dr. Norrine Russell discusses the benefits to ADHD coaching and provides tips to help with executive dysfunction. Her son and daughter both have autism, ADHD, and anxiety. She noted that one of the hardest parts of parenthood is feeling alone. Although her children have the same diagnoses, they have very different presentations.
ADHD coaching is about teaching skills that kids with ADHD are delayed in developing, such as executive functioning. They provide support, collaboration, skill building, and scaffolding. They figure out what are their strengths and where are areas for development. Then they build executive functioning or social-emotional skills. They start by building the relationship. They then set goals, and teach and manage executive functioning skills. They use a project manager, including planning with reflection, practice, skill development, and goal setting. They work to break down barriers to get the kids where the kids want to go.
Coaching is helpful when their mental health is stable but they are still struggling due to a lack of skills. To use planners, they take the planner out, wait while they write down assignments, and sometimes have people text or email the child assignments, so they have them in writing.
Have a dedicated in and out box dedicated for school things. The child puts things in the box that the parent needs to see. The parent completes whatever it is, and then places the completed item in the out box. The child then needs to check the out box before leaving for school every day.
Make sure your child has a red folder. Every piece of paper they get in school goes in the red folder. When they get home, they open up the red folder, they figure out what goes in the parent in tray and what is homework. When the homework is done, it goes in the return side of the folder.
Have refreshers of every school supply item and remind your kid to go and replenish each thing once per month.
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Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 108: Learning An Instrument When One Has Special Needs With Guest Delwyn McKenzie
In this episode, Delwyn McKenzie discusses the usefulness of learning an instrument for children with special needs. She grew up playing instruments, and made sure her children learned instruments, too. Early on in her childhood, her daughter was diagnosed with dyslexia. She noticed that her daughter had more difficulty learning an instrument than her other children did. This led Delwyn re-evaluate her teaching strategies to be inclusive for all children.
To get your child involved in music, seek out group experiences. She recommends getting involved in singing and starting with a single stave rather than both treble and bass. When getting your child into learning an instrument, think about the style of teaching of the teacher and the style of learning of your child. Beware that playing by ear is helpful, but can make it harder to learn to read music later. Teach the child decoding skills before they learn to play an instrument.
Kids can start learning to play an instrument as young as 4, although they may have difficulty learning to read music later on if they learn this way. Difficulties children might have include difficulty with finger dexterity, eye distractions, not looking at the music notes, and distractions in the room. Make sure not to push the child farther than they can manage.
Playing music also improves confidence. Any type of performance, even in front of family or friends, can improve confidence.
Accent Music School
Suzuki Method
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Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 107: Promoting Reading In Children With Learning Disabilities With Guest Dr. Maria Cleary
In this episode, Dr. Maria Cleary discusses reading literacy and and the importance of continuing to read throughout childhood.
Her daughter was showing learning delays when she was young and was found to have left-brain hemiatrophy. Her daughter did well in special education classes in public school until middle school, when things started to change. She started to notice that things were different for her socially. She then went to a special education school, which her daughter loved. As she got older, there weren't any books that were at her reading level, and she stopped reading. Dr. Cleary searched for something, but couldn't find anything for her daughter.
Reading is so important because a huge percentage of kids with learning disabilities drop out of school and many are unemployed. Reading affects their success as adults. There has been no improvement in any grade level in reading since 2017 in the USA. By the time you reach middle school, if you stop reading, the neurons that support reading start dying and you start losing your ability to read. Reading is the single factor that leads to life success.
Readeezy
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Is The Bottom Falling Out For Readers Who Struggle The Most
The Brain That Changes Itself
The Brain's Way of Healing
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Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 106: Using Summer To Create An Amazing School Year With Guest Dr. Laura Reber
In this episode, guest Dr. Laura Reber discusses maximizing your summer to help your child with the school year. She discussed the importance of learning executive functioning skills. To help transition from school to summer, keep schedules similar (meals, sleep, activities), set expectations that the children are aware of, consider ESY, and ask the school what you can do at home to maintain skills over the summer. Keep working on literacy over the summer, in whatever way works for your child. She recommends doing reading and writing every day, continue working on IEP goals, read classic books, make a reading club with your child, starting book clubs with friends and neighbors, write with fun stimuli like stickers and shaving cream, pass notes with your child, and teach math by playing games outside with sidewalk chalk. To prepare to return for the fall, check in with the teacher about what the school year will look like and what that will bring, help your student prepare for the schedule or any changes, use social stories, and have your child reconnect with school friends. To help bolster executive functioning, have your child plan fieldtrips and plant a garden.
Progress Parade
Awesome Resources
ABC Mouse
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Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 105: Bassie Shemtov's Experience Creating Inclusive Communities and Employment Opportunities
In this episode, guest Bassie Shemtov discusses how to create friendship and inclusion in the community. She and her husband began their career by working in the addictions community. However, Bassie didn't feel as if they were offering everything they could. She reached out to the community, and the community recommended they offer support for teens. They started pairing teens with children with special needs, and the bonds started to become really strong between all involved. To continue to grow, they listened to what the families needed and started building for the needs of the families. As the kids and teens grew, they began to grow their adult services as well. They began to offer amazing vocational programs where the young adulys could gain skills and earn money.
She recommends that all communities create spaces for inclusion and allow each child to uncover their true potential. Make sure each child has the opportunity to give and make a difference. Consider starting clubs or organizations that promote inclusion and create new inclusive opportunities.
Friendship Circle
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Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 104: Alexa Bigwarfe's Experience of Twin-To-Twin Transfusion, Infant Loss, and Transformation Through Writing
In this episode, Alexa Bigwarfe discusses her experience with twin-to-twin transfusion syndrome and child loss. During her third pregnancy, she should have been followed as a high risk pregnancy with a maternal fetal medicine doctors, although the OB who was following her did not do her due diligence and missed the twin-to-twin transfusion. At the 12 week scan, her doctor nonchalantly mentioned twin-to-twin, but didn’t seem concerned. The doctor skipped the 16 week ultrasound altogether. At the 20 week ultrasound, they found the transfusion and immediately transferred her to labor and delivery. At the hospital, she saw an MFM, who provided her options for management of the transfusion. She was hospitalized three times during her pregnancy to do an amniocentesis. During her last hospitalization, she was bedridden in the hospital to be monitored for a month. Her twins were born 9.5 weeks early, as she naturally went into labor. Katherine passed away after two days. Her surviving twin was growth restricted in the womb and spent 3 months in the NICU. After the fact, Alexa found that there could have been other treatments provided for her children, but her doctors either didn’t know or didn’t offer those treatments.
The NICU stay was very hard for Alexa because she had to pass the spot where he other daughter passed away. Her other daughter had some touch-and-go moments, but was otherwise lucky in her health that she didn’t have lung, eye, or bowel issues. Meanwhile, Alexa was also caring for a 2 and 4 year old. Milk flow was low due to stress and trauma and Alexa had to pump every 2 hours around the clock to maintain her milk flow. Her daughter had issues with reflux, had trouble with suck-breathe-swallow, and needed a few minor surgeries. She was still a low weight due to feeding difficulties, so she had a g-tube placed. She had a hole in her heart when she was born, and it closed on its own by 18 months.
Alexa initially coped by compartmentalizing, and put her grief aside to take care of her other children. Afterward, she coped by using writing, support groups, blogging, Facebook groups, and connecting with other moms.
To write a book, start with an outline. Interview other people who have gone through the process to get other perspectives as well. Spend some time figuring out how you want to publish. Hire someone to do the things you aren’t good at. Get educated on all the different steps.
Ditch The Fear And Just Write It
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Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 103: Raising a Child with STXBP1 With Guest Chloe Weber
In this we discuss rare genetic disorder called STXBP1. Guest Chloe Weber’s son Remy has a rare genetic disorder called STXBP1. This condition affects syntax and binding protein. For these individuals, their bodies don’t make enough of the protein,the protein is misfolded, and the proteins can affect the brain. The condition can cause delays, cognitive impairments, ataxia, apraxia, parkinsonian tremors, and epilepsy.
Remy was referred to early intervention at 9 months, as he was not developing as expected, although Chloe first started seeing signs at 4 months. He was then referred to genetics and neurology. He was diagnosed with a genetic disorder at 2.5 years old.
Although her son has a lot of impairments, Remy remains happy and in the moment, even during this therapies. His seizures started when he was 2 years old, around the time he was diagnosed. For treatments, they manage seizures, stress, insomnia, and any symptoms that arise. There is no cure. They have tried intense therapy programs, CBD, oxygen therapy, supplements, movement therapy, ozone therapy, hyperbaric therapy, neurofeedback, and floor time. Remy needs constant supervision, even at night, due to having nocturnal seizures.
Chloe discusses all of the advocacy work she has had to do to help Remy, including advocating for him to be allowed to attend school. Remy was kicked out of school twice, causing them to have to move, and uproot her company and leave behind family and friends. When Remy was 3, there was an inclusion program that he was able to attend through the school system, with a lot of supports. As Remy got older, Chloe started getting phone calls to come pick up Remy because the school didn’t want to deal with his behaviors. He is now in a great program in Colorado, although the paraprofessionals are mostly in charge of the children, rather than the special educator.
For Chloe, she copes by being easier on herself, using positive self-talk, uses Fight Camp, being in nature, and using meditation.
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Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 102: Spinal Muscular Atrophy And ADHD With Guest Trudy Citovic
In this episode, guest Trudy Citovic discusses raising a child with spinal muscular atrophy. Her daughter, Alina, was diagnosed with SMA when she was 5 years old. She never lost any skills but started experiencing weakness and less stamina. She was about to lose skills when she was formally diagnosed. Her nanny initially picked up on the symptoms, as Alina was not developing at the same rate as another child of the same age. Alina couldn’t go up the stairs well and couldn’t run, and this spurred Trudy to take Alina to the doctor. They spent two years searching for a diagnosis, and a lot was ruled out, but they weren’t sure what was going on. Due to well-timed genetic testing at age 5, Alina was quickly diagnosed with SMA and was provided with treatment just as it was coming out. She initially completed the SMA treatment that used a spinal tap, where the medical was injected intrathecally, although it caused her PTSD due to a horrible spinal fluid leak from the first treatment. The doctor who injected it was on vacation, the ER doctors on call were not familiar with her condition, and misdiagnosed her as fine and sent Alina home. The next morning, the head of radiology called them and said Alina needed to immediately come to the hospital for MRIs, and found that she had a horrible spinal fluid leak. The only treatment at the time was for her to lay flat for 3 days. After this treatment for the leak, Alina still had to go back for 4 more spinal tap treatments. To help with the PTSD, Alina underwent psychotherapy, which was helpful.
Once Evrydsi came out, they immediately switched to that, which has been very helpful to Alina. Alina no longer has to undergo invasive treatments and can simply take a pill every day. Alina no longer has to be exposed to trauma or anesthesia, no longer misses school, and no longer has a several hour drive to get treatment.
Teachers at school didn’t understand Alina’s condition, which led to Trudy pulling her out of that school. Getting a 504 plan and switching schools was really helpful in minimizing difficulties for Alina. They taught Alina how to advocate for herself, which has been great for Alina. Nowadays, other than living on a house that is all on one floor, there are minimal impacts of SMA on their lives.
Initially, coping was really hard for Trudy and her family, especially due to the medical trauma. She and her husband separated for a short-while, and they engaged in a lot of self-reflection. They sought help from a doctor, who diagnosed them with ADHD and anxiety/depression and prescribed supplements and medications that helped with they mental health. Trudy also began to engage in more yoga, teach yoga, and do daily meditation.
How to Talk so Little Kids Will Listen: A Survival Guide to Life with Children Ages 2-7
The Whole-Brain Child Workbook
Attention Deficit Disorder: The Unfocused Mind in Children and Adults
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Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 101: Raising A Micropreemie Who Uses A Feeding Tube With Guest Gaby Grinberg
In this episode, guest Gaby Grinberg discusses prematurity, NICU stays, and feeding journeys. Her daughter Lana Rose was born at 24 weeks gestation, weight 11 ounces. There was no initial sign that she would go into labor early, as her pregnancy was pretty normal. At the 20 week ultrasound, it was found that she had intrauterine growth restriction and reduced amniotic fluid. They completed numerous tests and exams to figure out what to do next. Starting at week 22, she started to feel unusual, with stomach pain, headaches, swelling, nausea, and shoulder pain, and was told that everything was ok. She was twice not diagnosed with preeclampsia and HELLP, even though that was what was occurring. She had been counseled to take Tylenol if she experienced pain, which she did. However, the Tylenol caused problems for HELLP, since she had been misdiagnosed. She began to get very bad chest tightness, and went right to the hospital, where she was immediately admitted. She remained in the hospital for a week before she was rushed for an emergency C-section. Lana Rose was immediately taken to the NICU and intubated. Complications included breathing difficulties, difficulty keeping her weight up, and a very small brain bleed. Lana Rose stayed in the NICU for 6 months before being discharged to home. She was discharged with a G-tube and on continuous oxygen. They were medically quarantined for several months afterward. After the C-section, Gaby was let go from her job. Therefore, they lost their health insurance and had to switch plans, and her husband had to work really long hours. They had to just keep pushing through. Coping was hard. Gaby ran out of breast milk, was not able to breast feed, and was not allowed to bottle feed Lana Rose. Lana Rose had horrible reflux, with food being pushed out of her tubing at every feeding, made worse by undiagnosed lactose intolerance. This led Gaby to finding breast milk for her daughter, as Lana Rose was losing weight and was being labeled as failure to thrive. She was also having horrible rashes and diarrhea from the formula. Due to oral trauma through intubation, Lana Rose refused to eat foods orally. They tried OT and PT and feeding therapy, but Lana Rose still refused. They changed the formula, but Lana Rose was still not gaining weight, since she was not getting food or nutrition in. After age 1, Lana Rose started using a blended diet in her g-tube, which helped her get better nutrition. Gaby experienced horrible postpartum depressed, PTSD, suicidality, and significant overeating. Talking with her husband helped reduced her suicidality. Gaby had to mourn the loss of her pregnancy, having a child with special needs, losing her job. Lana Rose currently has compromised lungs and gut issues, but is otherwise doing well.
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Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 100: Raising a Child With Spinal Muscular Atrophy With Guest Megan Fabrizi
In this episode, guest Megan Fabrizi discusses raising children with spinal muscular atrophy. When Liam was born, he was having difficulty regulating his temperature. He wasn’t moving his body. At his 4 month visit, he was diagnosed with hypotonia. The pediatrician was concerned and got him in immediately to a neurologist. When he was 5 months old, he got genetic testing and was diagnosed with SMA Type 1. Megan first noticed symptoms when he would cry and then gasp for breath. Through his treatments, they were able to halt the progression of his SMA and slowly make progress. He has been in PT and OT for most of his life. Liam as had trouble making friends due to other children being nervous about his medical conditions. However, he has a lot of online friends with SMA. Current treatments include a feeding tube, medication, and respiratory treatments.
As he has grown up, he is a happy kid and has remained happy through all of life’s difficulties. Megan has found it challenging to make sure to give each child her all, due to their complex and intensive but differing needs, but goes out of her way to try. They do a lot of video chats, sensory time, and therapies during their day. Through this, she has dealt with anxiety, depression, and PTSD, for which psychotherapy has been very helpful. She also does meditation, playing the ukulele, and singing. She copes by using social support.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 99: Raising a Child With Multiple Complex Medical Conditions With Guest Tammy Flynn
In this episode, guest Tammy Flynn discusses raising children with complex medical conditions. Her son Marcus has numerous complex medical conditions, including Ehlers Danlos syndrome, Sherman’s kyphosis, EOE (eosinophilia of the esophagus), a bleeding disorder, encephalopathy upon birth, low tone, poor fine motor skills, differently shaped ear canals, slow motility, reflux( as a child), and cancerous moles on his back.
Other than heavy morning sickness that spanned her pregnancy, her pregnancy was relatively normal. Toward the end, she thought her water broke, but it turned out that she was hemorrhaging. The labor and delivery ended up being pretty normal. Marcus was initially jaundiced and had difficulty with feeding from the beginning. Once he started feeding, he started throwing up a lot. He got an infection early on in life and kept getting infections. Marcus bounced from doctor to doctor, with them trying to figure out what was going on. He kept having ear infections, was failure to thrive, was throwing up all of his feeds, and was very developmentally delayed. Doctors didn’t know what was going on. At his 9 month visit, Tammy brought up her concerns with the pediatrician, and it was recommended that Marcus start PT and OT. At that time, he was functioning at the level of a one month old. Tammy felt like she was in a whirlwind, as her other 2 children had lots of activities going on, and Tammy was running a business as well. When he was 3, Marcus had a nerve and muscle biopsy done, which revealed brain encephalopathy. This started her down the road of obtaining additional services, including feeding therapy and speech therapy. They started seeing a lot of specialists, but still were not getting answers. 10 years later, a doctor re-looked at the nerve and muscle biopsy that had been done when Marcus was 3, and found that it was done wrong, and wasn’t a good enough sample to give them enough answers. Marcus was involved in therapies on a daily basis. Around age 12, Marcus started to look hunched over. He underwent imaging and results showed Sherman’s kyphosis and he was fitted for a back brace. Once he got to 97 degrees hunched over, they started doing genetic testing to see what they should do next. The doctors started looking at possible syndromes to try to figure out what condition Marcus had. When he was 19 years old, Marcus’ spine started collapsing. They needed to decide quickly whether they would operate or not. Therefore, they went on a strict diet, did therapies and exercises every day, and tried to get in him the best shape possible for the best possible outcome for surgery. He underwent the 10 hour surgery and remained in the hospital for weeks afterward. He then did in-home therapies for months.
Tammy found that social support and connection with other medical parents key to helping her son. She found that reaching out to the organization related to the diagnosis was really helpful to get recommendations for treatments and doctors. She also found creating an incredible medical team and firing anyone who isn’t a good fit very helpful for Marcus. Give yourself a moment to allow yourself to feel your emotions. However, try not to bring those feelings to the medical appointments. When Tammy gets a new overwhelming diagnosis, she schedules a follow up appointment to come back and ask all the questions, so she can give herself time to cope emotionally.
For hospital stays and ER visits, have a GO bag packed, with activities, things to do, things that bring you joy, work to do, a toiletries bag, things to help your child feel more comfortable, and things that will make you feel more comfortable.
For children who have multiple conditions, keep a packet with diagnoses, medications, adverse reactions, where they find spot to drop blood off at, lists of specialists and doctors, hospital numbers, and scheduling numbers. Start making your chart early, and add to it. List out how the conditions affect your child, what the treatments are currently, and everything that changes. Update the chart every 6 months to a year. Work on building your case for services, when they are needed.
Keep the medications organized. Listen to podcasts, Find low costs tools. Talk to others who have been through the same things. Use your state organizations when you need information.
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Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 98: Dafne Wiswell's Story of Raising Children With Type 1 Diabetes and Ankylosing Spondylitis
In this episode, Dafne Wiswell discusses her son’s experience with Diabetes Type 1 and her daughter’s experience with juvenile arthritis and Ankylosing Spondylitis. Her son was diagnosed with Diabetes when he was 2. He started having accidents, drinking a lot of water, had reduced appetite, and experienced intermittent vomiting. Once a friend wasn’t able to recognize her child, she called the pediatrician ASAP. The pediatrician ran a bunch of tests and sent them immediately to the hospital where he was found to be in diabetic ketoacidosis. Treatment has included insulin, initially being injections and later using the pump. He also has a service dog that will sense when his blood sugar is low.
Her daughter started to experience pain starting at age 6. She took her daughter to a pediatric rheumatologist, where she was diagnosed with psoriatic juvenile arthritis. She was later diagnosed with Ankylosing Spondylitis. She has tried numerous medications for her conditions, but thus far, nothing has really worked. She is currently doing infusions once a month.
Challenges have included learning how to help a child who has a potentially life-threatening condition, learning to recognize and treat patterns, helping her child have a normal childhood and learn to manage his diabetes, finding ways to make it safe for her son to go out with friends, maintaining a romantic relationship, and having limitations on travel. She has advocated for her children by teaching them their rights, helping him learn how to advocate for himself at school, and finding less expensive ways to get medications for her children. She copes by prayer, allows herself to feel her emotions, knowing that her children can still live a good life, using social support, and removing toxic people from her life.
She recommends starting earlier with helping your children learn to advocate for themselves, helping them be informed about their healthcare, telling them to shop around for prices for supplies and insurance, and knowing your child’s rights.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 97: Raising a Child With Marfan Syndrome With Guest Allison Pullins
Episode 29: Raising a Child With Marfan Syndrome With Guest Allison Pullins
In this episode, Allison Pullins discusses her experience raising a child with Marfan Syndrome. James was diagnosed with this connective tissue disorder when he was 2 years old. He experiences an aortic aneurysm, is very nearsighted, has dislocated lenses in his eyes, and low muscle tone. The first signs of something different was asymmetry in James’ eyes. Things were fine at the first eye doctor appointment, but 6 months later, his vision prescription was drastically different. He needed glasses by age 1. Around age 2, he was found to have lens dislocation in his eyes. He then underwent an echocardiogram, which found an aortic aneurysm. It was recommended that he undergo genetic testing, which quickly found Marfan syndrome.
When Allison got the diagnosis, she went through a year-long grief process, where she had difficulty coping. She still functioned, but emotionally, she was having difficulty. To cope now, she engages in a lot of self-care. She exercises, meditates, eats healthfully, and makes sure to stay in the present. She also moved closer to Buddhism, found a community, found her higher purpose,and strengthened her relationships. She has found that being in the moment has made her a better person and parent. She discusses her fears and concerns for her son and discusses her son’s understanding of the condition. She discusses the lack of advancement of treatment for the condition. His condition is relatively stable currently. Treatments are limited for Marfan Syndrome but James has used losartan and a beta blocker.
The family is choosing to move to be closer to family in order to advocate for James and to use their social support. She found a lot of social support and relies heavily on the Marfan Foundation. Going to conferences really helped her meet people. When raising a child with special needs, consider your child’s needs, get to know your child, listen to your child, and make the best decisions you can. Allison discussed the sibling challenges of special needs.
Marfan Foundation Children’s Program
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Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 96: Alternative Childcare Solutions With Guest Shannon Parola
In this episode, guest Shannon Parola discusses alternative child care options for families with special needs children. During COVID-times, child care has been very tough to find, and often not safe. Shannon discusses that there are numerous options for care for children, including Nannies, au pairs, nanny pods, nanny shares, family, friends, in-home daycare, daycare, and family babysitting shares. Some people moved closer to family to have extra help. If you can’t afford full-time care, hire someone to help give you respite for an hour or two. Write down a list of possible options for your family. Ask family and friends for suggestions. Take your time to find the right fit; don’t just hire anyone who comes through the door. Listen to your gut. Find a nanny that will do what you ask of them. If you use an agency, read through the fine print to know what the terms are. Go to colleges and inquire about students who are studying to be therapist. Post a listing for care there. Post on LinkedIn to see if someone is interested in the job. Look in your local Facebook mom’s groups for daycare center recommendations. Consider splitting care with another family who has a child with the same needs. Get a letter of recommendations from your recent nanny that you can offer to future nannies. Look into medical caregiving through your insurance. Look for inexpensive memberships for childcare through your job. Build your village. Once you have found your person, use a communication notebook on a daily basis to help.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 95: Dawn Veselka's Story of Raising a Child With Mixed Connective Tissue Disease
In this episode, guest Dawn Veselka discusses her experience raising a daughter with a mixed connective tissue disorder. Her mix is juvenile arthritis, scleroderma, Raynaud’s and dermatomyositis. Sadie’s triggers are exposure to viruses, sunlight, and certain foods. They determined her triggers through trial and error. Her daughter, Sadie, started showing signs of her condition at 18 months. She started showing trunk rashes, stopped being able to walk, not eating much due to jaw pain, wouldn’t hold a spoon or pencil, and ate with her fingers. Dawn tried to find a diagnosis for her, but the doctors didn’t think she needed to get testing for Sadie. Eventually, she couldn’t move or get off the floor. She was told that she was just a worried first time mom, was told that she was putting her child through horrible tests for herself and not her child. She had to research things on the internet to find a proper doctor, and then Sadie was properly tested to find her actual diagnoses. Dawn recommends listening to your parenting instincts.
To help Sadie, they tried a lot of different treatments, including medications, shots, IVIG, infusions, anti-inflammatory diets, chiropractic, and acupuncture. It took a lot of time and treatments for Sadie to be able to be more independent with activities, physically. Due to discrimination from others, Dawn and Sadie decided to do homeschooling, which has worked very well for Sadie. Dawn heard so many stories of teacher’s discrimination against children with chronic illnesses. Sadie did a lot of co-ops to help with school. Although Dawn didn’t want Sadie to have to use a wheelchair, Sadie greatly increased her independence and abilities when using a wheelchair, so she started using one.
Dawn recommends making family a priority. Sadie prioritizes her energy and plans in down time or recovery time for afterward. Dawn has advocated for Sadie by standing up for her, getting involved in foundations, teaching Sadie to follow her internal voice, and giving up expectations others put on her. Sadie has found kind and empathetic friends who are really compassionate. Dawn taught Sadie how to stand up for herself. They use video chats to help Sadie be social when she doesn’t feel well enough to get together in person. Sadie is finally in a place where her condition is very stable.
Dawn uses social supports by talking with other medical moms and running a charity. To advocate for yourself, never give up, and don’t search for advice from people who haven’t been through it because they won’t understand.
Instagram Chronic Warriors Collective
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Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 94: Building Independence in Your Children With Special Needs With Dr. Sarah Allen
In this episode, we discuss developing and promoting independent skill building in children with special needs. Guest Dr. Sarah Levin Allen, AKA The Brain Gal, discusses ways to minimize anxiety in children with autism. She also provides tips for how to help kids cope with changes within the family. For independence, remember to teach the skill. Don’t just rely on sticker charts. Things don’t always come as naturally to children with special needs. Break down the parts to the skills and help the kids to understand what they are doing. Use reflective questioning. She discusses areas to work on the most and ways to get around challenges. She discusses ways to build self-advocacy in young children. We converse about aiding children in coping with divorce and explaining dating and blending families to children with special needs.
Raising Brains : Mindful Meddling to Raise Successful, Happy, Connected Kids
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 93: Raising a Micropreemie With Autism With Guest Melissa Harris
In this episode, we discuss a mother’s experience raising a micropreemie. Melissa Harris has two children, one of whom was born at 24 weeks gestation. She found that she had a bincorniate uterus, and had to undergo several surgeries to fix the problem. While trying to become pregnant with her second, she experienced several miscarriages. She underwent several IUI’s to become pregnant. She had frequent hormone shots to keep the pregnancy going. If there was any hint of a problem, she was placed on strict bed rest for 3 days. She was diagnosed with an “incompetent cervix” which was thought to be the cause of her son being born early. When she went into early labor, she was taken to the hospital, where she had to lay completely still until her son was born. She had to be tipped back 30 degrees as well. They found that the sac had already started to come out and she was contracting frequently. She was given magnesium to stop the contractions. She held on for 6 days before her son was finally born. She had little to do during that time, and passed the time by having visitors and watching shows. She felt very sick with migraines and from the magnesium. Due to her son being a micropreemie, she had to undergo a c-section to have her son.
After her son was born, he was taken right to the NICU, where he stayed for 95 days. He required oxygen, two surgeries, had a lot of apneas and bradycardia, his kidneys stopped working, and was found to have retinopathy. Otherwise, he had a relatively calm NICU stay. He had respiratory therapy and occupational therapy for head shape and head positioning.
She had numerous complications herself during the first month, including a bad uterine infection. During the NICU stay, she hyperfocused on making sure that everything was ok and she didn’t give herself time to process and cope. She struggled to balance care for her daughter and her son. The surgeries were overwhelming for Melissa to deal with.
Once her son arrived home, the family was not allowed to leave their house for 6 months. She had to quit her job because they wanted her to come back to work and she was not allowed to leave the house.
When her son was 2 years old, he was diagnosed with autism. He was diagnosed quickly and tried lots of different types of therapy. She copes with the busyness of life by writing.
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 92: Sensory Processing Disorder With Guest Candice Curtis
In this episode, we discuss sensory processing disorder, meltdowns, and making it all work. Guest Candice Curtis’s, OT, oldest son is autistic. Throughout her training, she began to gravitate toward occupational therapy and sensory processing disorder. There are 8 different sensory systems. Our brains have to organize all of the sensory inputs, decide if it is important or not important, and make all of it available for us to use when we are trying to do different activities and tasks. A disorder happens when our brain can’t do that effectively or easily and it impacts one’s ability to be able to participate in activities.
Try to see things through the mind of your child. This will help you figure out what to do to help your child. Her biggest recommendation for sensory strategies is to get your children outside in nature more often. Nature has a huge regulating quality, as it is slower and calmer. Set up a playroom or play areas in your house. Ideas for it include a beanbag chair, swing, trampoline, rocking chair, weighted blankets, and/or lycra blankets. Take your child’s lead to play. Slow down and take your time. Play with them and interact with them. Join in with whatever they are doing. Use rhythmic vestibular activities.
During COVID, Candice decided to homeschool her children. She needed to get better at self-care, step back, give herself grace, meal plan, delegate where she could, omit tasks when she could, give herself more credit for all the tasks that she did, think about progress over perfection, write down her routines and do what she was also ready doing but in a different way to make things more efficient, use music and headphones for her son, start her son’s day with sensory strategies, listen to meditations at night, use sensory strategies right before bed, schedule some time buffers into her time, and schedule time in just to sit and exist with her children. For self-care, she recommends shifting your perspective, examining your self-talk, creating a joy list, making an effort to make joy moments part of your every day, paying attention to self-talk, joining book clubs, planning out your week ahead and blocking everything out, and figuring out what to prioritize or simplify.
A meltdown occurs when the child is way too overwhelmed. Practice strategies with the child when they are calm, so they have the skills when they need them. Be proactive and use sensory strategies with the child throughout the day. Keep in mind that they are reacting to stress and they can’t help it. It is your job is to keep them calm, find out what could have caused the meltdown, and figure out how to help them through it.
The Autism and Sensory Parenting Podcast
Sensory Integration and The Child
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 91: The Science Of Mindfulness, Self-Compassion, The Joy of Living, and Positive Psychology, With Guest Dr. Rabia Subhani
Today, we discuss mindfulness, self-compassion, the joy of living, and positive psychology. Guest Dr. Rabia Subhani trained and worked as a pediatric neuropsychologist. However, after she had a child with autism, she found a different path and started working in the area of mindfulness. She found that when she changed her reactions and used mindfulness practices herself, her son’s behaviors changed. Mindfulness is bringing your attention to the present moment with a loving, nonjudgmental awareness.
Mindfulness is helpful for neurodiverse children, as it can help with sensory overload, overwhelm, emotional overwhelm, improving focus, calming down, emotional regulation, reducing stress, coming back to the present moment, and managing anxiety. If you help the child practice regularly, then it becomes routine for the child to use these strategies when stressed. Mindfulness can make changes in the brain to help depression, chronic pain, anxiety, memory, monkey mind, and attention/concentration.
Mindfulness can help children and parents. Mindfulness can be used at school when the child is stressed, without anyone else seeing or knowing what the child is doing. Strategies include mindful eating or drinking, breathing exercises (including using an expanding and collapsing sphere to demonstrate the breath), 5-5-5 breathing, using cues to remind the child to take deep breaths, sitting meditation, bring attention back to their breath, the raisin exercise, brush teeth or shower mindfully, mindful movements (such as yoga), and modeling mindfulness behaviors for your children. Try to build these practices into a routine. Start off small.
Self-compassion is giving yourself the same level of caring and compassion that you would give to someone else, with the intention and motivation to alleviate your suffering. Think about how you would treat someone else in your situation. Treat yourself like you would treat your best friend. If you don’t replenish, it leads to overwhelm and stress. Without self-compassion, it leads to shame, depression, anxiety, overwhelmed, and poor self-image. With more self-compassion, people engage in more exercise, eating well, going to the doctor, and have more optimism, life satisfaction, happiness, and better physical health. Parents can gain self-compassion by soothing touch (giving yourself a hug), doing things that make you feel better (warm bath, massage, drinking a cup of tea, going out in nature), self-compassion meditation, and a self-compassion break (have mindfulness that this is a moment of suffering, shared humanity vs isolation, and self-kindness).
The joy of living is about choosing to live each moment with love, joy and gratitude and finding that joy. You are constantly finding new ways to get excited and everything makes you happy. You are consciously living to be optimistic. D what feels aligned with your heart, soul, and mind. Do what feels good to you.
Positive psychology can increase joy of living, including savoring and gratitude. Savoring is noticing and appreciating the positive things in life, and letting them linger, the mindful experience of pleasure. Gratitude is recognizing, acknowledging, and being grateful for the good things in life.
The Mindful Self-Compassion Program
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 90: Successfully Navigating College With Autism, Part 3
To help with the transition to college, work on independence at home, bit by bit, select the goal with the student and start with the easiest one, rather than the hardest or most importance, then build up from there. Incorporate a reward system into the mix. It is helpful to help the child gain independence in communication with the teacher and have the student ask for the help and supports, especially starting in high school. Same thing with doctor appointments. Have the student schedule their own well visit. If they aren’t comfortable with it or can’t do it, work on self-awareness, anxiety, and social skills that are preventing this from happening.
Know that in college, writing and written expression are huge. If a student struggles with written expression, college will be difficult. It is helpful to figure out in high school why they might have trouble and to see what can be done to help, if possible. If there is a subject that the student hates, see if there is a way that they can engage as minimally as possible, but in a way that they will get by in the college courses they need to take.
Another big issue is the ability to include oneself. Students need to find ways to make themselves part of communities in college. Without socialization, depression can occur. Create or find ways to do this in high school. Practice having conversations and introducing yourself. Keep in mind that once your child is 18, the college does not have to speak with parents unless the student signs a release. Agree as a family beforehand about the level of involvement of the parent in the college education and have the student sign a release right off the bat. Then develop plans to fade out parent involvement and support and empower students to be their own supports over time. This should start in the high school years. Let the student know ahead of time that parents will start to fade out.
When it comes to employment planning, parents often have great ideas to create or carve out jobs for their children. It is helpful to identify career interests and skills that need to be built, in order to help the student be extra prepared for employment after college. Employment doesn’t always go well because the traditional interviewing and hiring process is a poor fit. The interview process is heavy on social engagement, social nuances, fast rapport building and social communication, navigating small talk and chit chat, and navigating questions about strength and weaknesses. Experience-based/task-based interviews are a better fit. Other things to help with job-finding include finding a career mentor, making sure the students accrue some sort of vocational experience in high school and college, finding jobs that give students an opportunity to practice basic work skills to start off, have them use their school career center to identify opportunities, and connect to vocational rehabilitation services.
Links:
Emory Autism Center Education and Transition Services
Frist Center For Autism and Innovation at Vanderbilt
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 89: Successfully Navigating College With Autism, Part 2
In this episode, we continue our discussion of everything college for teens and young adults with autism. Guest Dr. Matt Segall discusses how to decide on the type of college that is right for the teen with autism. When deciding on the type of college to choose, pay the most attention to social maturity of the teen, executive functioning challenges and independence in using strategies to support academics, self-advocacy ability, and the reason for going to college. If a teen has difficult with these, a 4 year college, at least to start, may not be the best choice, or taking a slow approach to school may be beneficial. For these individuals, Dr. Segall recommends a 2 year Associate’s degree option, perhaps transitioning into a 4 year college afterward. For those who are a hands-on or an experiential learner, technical school might be a great option. It can be helpful to start specializing in that area in the high school years as well. The likelihood of those who go to a technical school getting a job after college is much much higher than those who go the traditional college route. Online learning is best for someone who is overwhelmed by learning in person, but has a strong skillset of independent learning and self-management and executive functioning. Make sure to match the educational setting to the person’s life goals.
The four pillars of important support in college include care coordination, skill building, within campus inclusion and capacity building, and vocational development.
When looking to see if the school is a good fit for your child, consider the living situation, and examine the distance from home, the requirements to live on campus, classroom size, student support systems, academic coaching, mental health support, care coordination/case management, assistance with skill building, mentors, assistance with executive functioning, independent living skills, and the community of students. When looking for a college, reach out to the autism support networks there and meet with them, get a sense of how the student will register with the office of disabilities, inquire about autism supports on campus, look at academic rigor of the school, think about if the student has nailed down their academic career path, examine the community of students.
Don’t start looking into college and doing the aforementioned in the spring right before graduation. Start thinking of these things in the 10th grade year. Think about the level of independence of the student academically, build up independence skills and task management skills, build executive functioning skills, and engage in person-centered planning to help them identify what they want in a community.
Links:
Emory Autism Center Education and Transition Services
The Parent’s Guide to College for Students on the Autism Spectrum
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 88: Successfully Navigating College With Autism, Part 1
In this episode, we discuss everything college for teens and young adults with autism. Guest Dr. Matt Segall discusses that nowadays, many teens with autism are going to college. However, a low number of them graduates. Those who do graduate tend to have a higher academic ability, good executive functioning skills in the areas of self-management and completing and turning in work, resilience, and the creation of a support team around the individual. In those who do not graduate, often college was not a good choice of postsecondary education or it was the wrong college for them. Choosing to go to college must be an active choice. Passively going to college without reason or supports can lead to anxiety, depression, and shutting down.
Some challenges to success in college include reduced executive functioning, difficulty with social engagement, anxiety, and developmental delays.
In college, you need an active and engaged initiation where you use self-advocacy to obtain a support system and accommodations you might need. Creating a strong social network with supports is crucial to success in college. Dr. Segall recommends ways to be more successful in college including accommodations, strong self-advocacy, strong social support network, possibly staying in high school longer, taking the “slow approach” to higher education, and/or dual enrollment in high school and college during the 5th year of high school. It can be helpful for the teen to practice going to their professor/teacher and disclosing their diagnosis and requesting accommodations. They should also practice using office hours, checking in with the professor occasionally, using peer mentors, and using visual schedules and visual supports. It is helpful to pull on self-advocacy and teach the teen helpful strategies, so supports will eventually be successfully faded out.
Self-advocacy is key. Self-advocacy is about autonomy of choice and reaching out to get the things you need. In college, the teen can go to the career center to find information about resources, careers or internships, ask for accommodations at the college, speak up for themselves in small groups academic projects, and reach out to the counseling center and request an appointment. Meet with the office of disability services at the school about accommodations. Disclosure and advocacy can be two different things. Disclosure can be a powerful tool that one can use at your disposal.
The ideal college situation is an inclusive college campus where they understand the universal design for learning, educate faculty staff and students about autism, and the faculty reaches out to the students if they notice someone has features of autism. There are 100 colleges nation-wide who have college autism support programs. The provide academic accommodation supports, academic coaching, skill building and teaching skills, care coordination, tutoring, mentoring, life skills building, and preparation for employment. However, these come at a higher monetary cost.
Start planning for college in 8th or 9th grade. Think about what accommodations that are benefitting the student at that point that will be helpful in a college environment, and make sure the student is aware of what those things are. Include the student in the IEP process. Fade out what you can when you can. As they approach graduation, get a new psychoeducational evaluation and include the relevant tools, resources, accommodations, modifications. Use this as documentation of needs for the office of disabilities at the college.
Links:
Emory Autism Center Education and Transition Services
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 87: All Things Physical Therapy With Guest Lucia Montuonto
In this episode, guest Lucia Matuonto discusses physiotherapy! Physical therapists (PTs) work in rehabilitation and accident prevention. Their goal is to improve the patient’s quality of life. A child needs a PT when there are developmental delays, the child is not meeting milestones, or when there are birth defects, cerebral palsy, accidents, spinal cord problems, spina bifida, hypotonia, down syndrome, ataxias, dystonia, and peripheral nerve issues, as well as many others. If there is a difference with your child, PT might be useful. Parents should bring their child to a PT as soon as they see that the child is having a developmental delay or struggling to reach a physical milestone. The sooner they begin, the better the chance that the child can recover completely.
They use joint mobilization, strengthening, stretching, gait and vestibular training, ultrasound, and using other devices to help the children. They educate patients to prevent falls, fit them for wheelchairs, and provide orthotics training. PTs use tools and methods to help with balance, coordination, fine and gross motor, and wheelchair trainings. They can use methods like the Swiss ball, weight training, Pediasuit, and “monkey cage.”
To help engage the children, Lucia started telling the children stories. This led to her writing and publishing her stories. Reading stories about children or animals with special needs can help teach children, lead to compassion, and help with inclusion.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 86: Fostering and Adoption Journeys With Children With Special Needs With Guest Daniel Hall
In this episode, Daniel Hall discusses adoption and special needs. He and his wife have 5 children with special needs of varying degrees. Conditions ranged from Autism, drug exposure, Fetal Alcohol Symptoms, slowed processing speed, Reactive Attachment Disorder, developmental delays, PTSD, and possible Dissociative Identity Disorder. Daniel himself was in foster care as a young child, and was later adopted by the Hall family. His foster car experiences were abusive and traumatic prior to being adopted by the Hall family.
After adopting children (5 at a time), he was asked to be a trainer for parents who would like to foster or adopt children. He learned a lot by adopting his children. At first, it was hard to reach some of them. Over time, he learned about their traumas, how to reach them, and the best ways to interact with them and reach them.
Before you decide to foster or adopt, know your limits and get a good sense of what you will be like as a parent. Realize that you will have to learn about their trauma, learn about trauma in general, and help the children self-regulate. Be prepared for friendships to change. Surround yourself with people who understand. Listen to your children. Show interest in what your children are doing. Advocate for them. Look into foster parent associations to gain additional useful social support.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 85: Infant Feeding Challenges With Guest Mallory Millet
In this episode, Mallory Millet discusses feeding difficulties in infants and young children. Her three children experienced their own feeding difficulties, including difficulty nursing and reflux. She shared their stories. She noted that both speech therapists and occupational therapists (and occasionally physical therapists) can be feeding therapists, with the right training. They can assist with bottle feeding, breastfeeding, or both. If the parent feels like anything is wrong during feeding, it is beneficial to seek a specialist. If there is clicking, reflux, gas, loss of milk out of the mouth, popping on and off of the breast, coughing, or choking on liquids, it would be useful to seek an assessment. Some conditions are more likely to require feeding therapy, including cerebral palsy, Down syndrome, congenital heart disease, low tone babies, cleft palate, and cleft lip. The most common feeding issues are reflux, dysphasia, aspiration of food, and tongue tie. The earlier things are addressed, the better. A big sign to look for is open mouth posture.
To evaluate the children, a therapist will take a good history, learn about the feeding journey up to that point, will evaluate the mouth, and watch the baby feed. Feeding therapy is baby dependent, but should be pushing baby to do more, releasing tension in the baby’s mouths, education for parents of what to do at home, teaching the baby oral play, and teaching the parent how to interact during feeding time.
To help their babies, parents should get in the baby’s mouth, encourage oral play, and let baby stretch and open their neck. To help make mealtime more pleasant for mom and baby, relax during feeding time. With toddlers, don’t be afraid to push for them to try different foods, allow them to work through gagging (as long as they aren’t choking), don’t fight with them if they say no, offer preferred foods at each meal, offer one nonpreferred food at each meal, limit the amount of food on their plate, don’t make food a battle, and set up expectations early. To find a good feeding therapist, find someone who specializes in feeding therapy, ask why they do each activity and ask what the goals will be for feeding therapists.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 84: Divorce and Special Needs Children With Guest Jackie Harounian
In this episode, we discuss divorce while having children with special needs. Guest Jacqueline Harounian, Esq, has found that her field has become very busy during COVID, with an increase in fighting, domestic violence, mental health issues, and substance abuse leading to divorce. A lot depends on the couple, how well they communicate, and whether they are willing to see eye to eye on a lot of issues affecting special needs children. To avoid divorce, keep the lines of communication. More divorced families are using joint custody. The better the attitude of the family, the easier the divorce will be on the children.
When one is divorcing and has children, it is important that parents agree on where the children live and how they will be supported. The goal for divorce should be to avoid court, for the two parents to reach an agreement without a judge. It is best if parents work out their own schedule based on the needs of the child, replicate the schedule that was going on before the divorce, and see which parent is available when and what they are able to do or help with. If parents cannot do it themselves, it would be beneficial to sit down together with a coach, mediatory, or lawyer. Cases that go to trial are very costly.
For a divorce where children have special needs, sometimes one parent disagrees with the diagnosis or treatment, doesn’t think that a medication or treatment is necessary, parents disagree on vaccines, or there is a major issue and the parties don’t agree and one parent doesn’t agree with the doctor or medical advice.
Joint custody occurs when the parents equally split the time and resources with the children. It requires that the parents communicate well, get along well, and live in the same school district. Because everything is equal, no one pays child support.
Everyone reacts to divorce differently, impacted by the interactions and relationships of the parents, unresolved anger, and the desire to blame and shame one another. Counseling is beneficial for couples. For those with children with special needs, there is the added concern of finances, so compromising and budgeting in important. To manage financial hardship, get bank statements and tax returns in order, get your finances in order, get paystubs, create a budget, start to have conversations with your co-parent about the timeline, and discuss what you are going to do with your assets.
To make the divorce process easier on the parents, ask for help, reach out to family and friends, ask for breaks, try new things in your life, try to have a team approach with your team, try to be united in how your raise your child, practice forgiveness, maintain a positive attitude, maintain consistency, and improve communication with your co-parent.
To best explain divorce to children with special needs, do the announcement with your partner, in a non-emotional way, and at a time where the children have time to ask questions and have a chance to react, don’t make the announcement too early, and don’t tell them more than they need to know. Consider making the announcement on the weekend so the child has time to adjust to the information.
The impact of divorce on the child is dependent on the child and the age of the child. Consider conferring with your child’s therapist before making the announcement. Be mindful of their schedules and routines and minimize disruptions and changes in routines. Account for the child’s own stressors and preferences. With children with special needs, it is even more important to keep everything consistent. Consider psychotherapy for the children.
Keep in mind, it is not about winning, it is about moving forward. Parents can help their children cope by not fighting in front of them, not discussing financials in front of the child, not letting others talk negatively about the situation, not disagreeing in front of them, trying to reach an agreement on custody as soon as possible, and not focusing on the financials first. Easier and less expensive ways to divorce include using a mediator or doing collaborative law.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 83: Momming With Autism With Guest Alicia Trautwein
In this episode, we discuss raising children with special needs and different diagnoses. Alicia Trautwein has 4 children, 3 of whom are autistic. Alicia was diagnosed with autism at age 33, after her children were formally diagnosed. She knew that something was different about herself but doctors provided her with numerous incorrect diagnoses. However, for 3 years prior to her official diagnosis, she started to suspect that she had autism, due to similarities between her and her children. She found it very challenging to find someone to assess and evaluate her for autism. Her brother was also diagnosed with autism, but Alicia was an adult by the time he was diagnosed. Regarding parent, she learned from her brother to take things with a grain of salt. Benefits of having autism and raising children who have autism is understanding where they are coming from and understanding what they don’t quite understand, seeing and comprehending the bigger picture of what is happening with her children, figuring out her children’s triggers, knowing how to balance everyone’ sensory needs, figuring out how to navigate everyone’s general needs, seeing things from a different perspective, celebrating the small things, and slowing down.
To parent children with special needs, she recommends developing and establishing routines, having predictable routines, reducing unnecessary surprises, using visual schedules, blaming the schedule rather than yourself, and giving transition warnings. For resources, she recommends using tiktok for educational information about diagnoses and support, using fidget toys, and using social stories.
She knew her son had a special need upon his birth as he did not make eye contact and lost all language at age 19 months, and then she got him involved with early intervention. He had his autism evaluation and received his diagnosis at 2 years old. He immediately started speech therapy. Her daughter was always advanced in her milestones, but Alicia still knew that something was going on. Her daughter was misdiagnosed for a long time. Her other daughter had speech delays and went through speech therapy as a young child. After her son was diagnosed, her daughters were both diagnosed. It was at the appointment when her oldest daughter with autism was diagnosed that the doctor brought up to Alicia that she might be autistic. Her older children got involved with Horse therapy and psychotherapy.
To bolster relationships, communication is key. Ask for breaks, rely on your social support, take advantage of help, and use respite care. To manage everything, only book what needs to be scheduled, space things out, don’t overschedule, focus on what works best, use a family/shared calendar, put everything in the calendar, have older kids help out if they can, consider also keeping a paper calendar, and put things on the calendar as soon as they are scheduled.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Bonus Episode: Special Needs Superheros with Guest John Besold
In this episode, we discuss special needs superheros. Guest John Besold always believed in helping others, but when he experienced polymyosistis in 1999, his eyes were opened to the special needs world, during his several weeks hospital stay. His experience inspired him to write SPARQE. He decided to write a book where kids had special abilities rather than special needs. This book is best for kids ages 10-15, but can be useful for adults as well.
Links
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 82: Adoption Of Special Needs Children with Guest Dr. John Cranham
In this episode, Dr. John Cranham discuss adoption of special needs children. His son Cornell was born at 23 weeks. He spent the first 6 months of his life on a ventilator and trached before moving to a transitional unit. John’s wife initially worked with Cornell in the hospital as his therapist, and then decided that they should take him home as a foster child. They thought about it for a while, and then decided to move forward with it. They went through 2 months of training. Cornell initially required, PT, OT, speech, PEG tube, trach, and nursing care. When he was around 2, the ENT found that the tissue around the trach site was closed off and air wasn’t getting to his vocal cords. He then required surgery, which did not go well, leading to him stopping breathing frequently. It took another year to take the trach out and do the next surgery. At age 11, he was having difficulty breathing again and found that the trachea area hadn’t grown, and he needed surgery to fix it. John couldn’t meet Cornell until he was approved to be a foster parent when Cornell was more than 1 year old. Even though it was incredibly challenging, he found a lot of joy in going to see him. He had to do an overnight stay with Cornell in the hospital, which John found frightening at first. For a while, John had a lot of doubts. Over time, Cornell began to really feel like theirs. They experienced joy, fear, sadness, loss of your life.
John and his wife decided to adopt Cornell after his 2nd birthday, he went into respiratory distress, they didn’t think Cornell was going to make it, John started reflecting on his own resilience, he thought Cornell was going to pass away, and then a few seconds later, Cornell started fighting even harder. Then John decided that if Cornell could fight that hard, John was willing to fight for him. Early after the adoption, they went to see a psychologist, who told them that it was important to tell Cornell about the adoption before age 5.
Creating an IEP for him was challenging. Educationally, they had such a bad time moving him from Kindergarten to first grade that they took him out of public school. After attending a special school through 6th grade, he went back to the public school. There, he attended some inclusion classes and some special education classes.
Socially, Cornell was in an unusual place because he didn’t fit in with mainstream or special education children, so he didn’t have a lot of friends growing up. Nowadays, he has a larger social group through his religious organization.
For the transition to adulthood, Cornell had difficulty coping because his younger sister was able to go off to college and he wasn’t. However, he was able to attend a rehab facility which had some similarities to college, and Cornell really enjoyed it. To learn to drive, Cornell practiced with simulators, and persisted with trying to take the written test. He currently still lives at home, but does laundry, cooks dinner for the family twice per week, and is working on getting ready to go out and live on his own.
John coped by working at work really hard, using nursing care, respite care. Themes in the book include not comparing himself to others (comparison is the enemy of contentment), persistence, perseverance, purpose and passion, and embracing your obstacles as your biggest gifts.
Links:
The Cornell Effect: A Family's Journey towards Happiness, Fulfillment and Peace
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 81: All About Dyslexia With Guest Lizzie Shearing
Today, we discuss all things dyslexia. Guest Lizzie Shearing discusses that dyslexia is a reading learning disability. Individuals process written words differently in their brain, such that they rely on the left frontal lobe, rather than more on the left posterior areas of their brain. They show inefficient patterns of brain activity. Dyslexia occurs in 1 in 10 people. Symptoms include difficulty with reading, reluctance to read out loud or to read at all, reading being slow, reading fluency being slow, reduced awareness of patterns of words, spelling difficulty, and difficulty remembering words (working memory and phonological memory). Symptoms parents can look out for include difficulty following multistep directions, poor working memory, a delayed ability to read, misreading words, guessing words and rushing through, spelling difficulty, event sequencing difficulty, labored reading, and choosing not to read. Educational psychologists and dyslexia specialists can make the diagnosis. It cannot be a pediatrician who diagnoses. To make the diagnosis, they assess working memory, handwriting, reading fluency, spelling, and IQ. They also need to rule out visual difficulties, including Irlen syndrome, as well as hearing impairments. The earlier a child is diagnosed, the better things are for them, including emotionally. The earlier a child enters treatment for dyslexia and the more treatment they get, the better the outcome.
Treatments include going back to the beginning and making sure the child has grasped and mastered all the skills that they have been previously taught, a cumulative structured phonics program, filling in all the gaps, inference learning, trying to visualize scenes, and support with reading fluency. If children don’t get treatment, they tend to experience anxiety.
Regarding school, accommodations can be helpful, including differentiated teaching across lessons, list of spelling for key vocabulary, writing frame provided for the student, use of voice to text, use of bullet points rather than writing essays, extra time on tests, prompting, and rest breaks. Other helpful tools are quizlet/flashcards. Tech accommodations include immersive readers and dictation.
To help their kids, parents can encourage reading in any form, use audiobooks and read along with it, obtain specialist support for your child, make sure the specialist has a good relationship with your child, use google books, and use audiobooks from the library. To emotionally support children with dyslexia, help your child develop a growth mindset, help promote resilience, and help your child find a hobby they love.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 80: LGBTQ In the Autism Community With Guest Danielle Sullivan
In this episode, Danielle Sullivan discusses the gender and sexuality spectrum in the autism community. LGBTQ is very common in the autism community. There is also a high number of individuals who are autistic in the LGBTQ community. Individuals in the LGBTQ community have a higher likelihood of depression, anxiety, and suicidality as are individuals who are autistic. Therefore, support is really important. Start talking to your children about gender early. Start talking with young children about pronouns and demonstrate use of pronouns respectfully in daily life. Identify people you don’t know with “they.” Show that you get to decide your own gender and pronouns. Use the pronouns people ask you to use for them. Talk about how different bodies are different. Read books to the kids about conception and birth that are not gendered. Let them know that just because a body looks a certain way, we can’t assume that we know the status of the body’s reproductive organs. Read diverse books and watch diverse TV. Remember, you will not hurt your child by talking to them about sex. The more familiar they are with their body, the less likely they will experience sexual assault. Sex education is important. Start it at home at an age appropriate level. Don’t depend on school sex ed.
To support your child in coming out, know your location (state/country) and if it safe. Show your child that you know they are valid and you see them and you know them and one day it will be safe to come out. If your child is one of the first trans kids in their school to come out, consider going into the school and talking to the teacher and principal ahead of time to tell them about their pronouns and answer any questions they have. Provide them with a list of commonly asked questions and ways they can answer them, if other children have questions. Consider doing an informative presentation with your child in their class. Find support groups online. Find LGBTQ friends for your children.
In her experience, most kids disclose easily to their friends, with relatively little difficulty. Talk with your child that fitting in may not be the goals, but rather being your authentic self may be their goal. Children may even already have a friend who has come out. For younger kids, just reassure them that they are loved and supported. A friend will be your friend regardless of what you are dressed in or wearing makeup and if not, they are bad friends. A friend supports you and is there for you.
For coming out to family, the child’s joy and wellbeing may be more important to you than what family members think, or their opinions. Family are grownups and are responsible for themselves. You are the parent and are responsible for your child’s wellbeing. It is your job as a parent to support your child. If a child’s gender and sexuality are not being authenticated, suicide rates rise. It is your job as a parent to inform your child that there is nothing wrong with them. They are celebrated for who they are. Anyone who has a problem with that, is the problem.
To support your children, listen to them. Get them in groups with other autistic peers and/or support or friends group with other LGBTQ children. Local autism society chapters often have peer social groups for children and teens. Ask other parents where they are getting their support. Consider therapists for autistic LBGTQ support.
To reduce transphobia and homophobia in the community, try to get the school library to have LGBTQ resources in it, see if the school can celebrate LGBTQ holidays. Ensure that the school is offering disciplinary behavior to exclusionary or discriminatory teachers. Get support from other parents and group up to make your voices heard. As far as therapists, they are supposed to be supporting your child. If they are homophobic, they are actively harming your child. It is helpful to decide if the therapy they are doing is worth the damage there are doing to your child.
Books:
Julian is a Mermaid by Jessica Love
What Makes A Baby by Cory Silverberg
I Am Jazz by Jessica Herthel and Jazz Jennings
It Feels Good To Be Yourself By Teresa Thorn and Nicke Grigni
Podcast Episodes
Organization for Autism Research
Autistic Women and Nonbinary network
Trans Autistic Healthcare guide
The Autistic Self Advocacy Network
Guide to Holding Inclusive Events
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 79: Living With Autism While Parenting Special Needs Kids With Guest Danielle Sullivan
In this episode, we discuss inclusivity, organizational tools for special needs parents, and living as a parent with autism. Guest Danielle Sullivan discusses that all places should be as accessible and inclusive as possible, even for invisible disabilities. The world needs to consider light, noise, and visual clutter as well as physical disabilities. Listen to others when they suggest ways to be more inclusive. Awareness is key. Acknowledge and expect that people will behave differently. Model acceptance of different kinds of behaviors. Remember, differences are not harmful, they are just differences. Consider doing presentations in your child’s classroom about neurodiversity to assist with open-mindedness for the other children. Get involved in your local education system to see what change you can make toward inclusivity. Advocate for sensory friendly times and activities in your area. Suggest that paces offer sensory friendly bags with headphones and other sensory friendly objects. Clinics that offer autism evaluations could provide more evaluators to ensure it takes less time to get an autism evaluation.
Danielle was diagnosed with autism as an adult, as once her oldest child was diagnosed with ASD, as she began to see a lot of herself in him. She experienced depression and anxiety and sensory meltdowns (which she thought were panic attacks). It was helpful for her to find out that she was autistic. As far as having a leg-up on parenting, she feels that she understands her son well, and can figure out why he gets stuck and how to help him through it. She understood him better when he was learning to talk. They both have sensory processing and auditory issues, think in certain similar ways, are sensitive to certain stimuli, and have similar difficulties with social niceties, which helps her to be closer to her son and be able to parent him with more understanding.
She finds it helpful to be able to hyperfixate when needed. She finds it helpful to notice what is absolutely necessary and not necessary for interacting with others, prioritizing, and maximizing her use of her energy with her kids, prioritizing their sensory needs. The biggest challenge of having autism and parenting is the amount of noise, touch overwhelm, the effects of sleep deprivation hits her differently, and more difficulty adapting to changes in routine. Coping skills that have helped her include neurodiversity resources, focusing on scheduling, prioritizing basic needs, reducing sensory input, setting up signals to her partner that she needs a break, getting headphones and earplugs for herself, having sensory fidgets, and explaining her triggers to her kids. To help her child with auditory processing disorder, she may touch him or physically guide him to help him follow instructions, touch him on the shoulder, get in his space to make sure he realizes she is there, get closer to him, make sure he sees her mouth, repeat herself as needed, slow down, enunciate, turn off other noise, and make sure he has noticed that she is talking to him.
For creating household systems for neurodivergent individuals, she uses a loose routine, smaller routines that she can use at points during the day but are adaptable, breaks things down based on their priority to the family, focuses on what the kids need, builds in breaks, and has helpers like a list of food options, a list for every room she needs to clean, a shared google calendar, communication apps, and lots of lists. These systems can from trial and error and figuring out where she ran into problems the most.
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 78: A Blind View With Guest Ashley Wayne
In this episode, Ashley Wayne discusses parenting children with special needs through the lens of blindness. Ashley was born blind, as were her two older children. Her son also has cerebral palsy. She was initially worried about how she would be able to parent while blind. However, no one else appeared concerned, so she pressed on. She had done some babysitting in the past, and it hadn’t gone well. However, she found successful ways to parent by trial and error. She found that her children being blind actually made learning to parent easier. She found that her own experience was helpful in teaching her children tips and tricks to make living with blindness easier. To help her she uses braille labels, a braille tablet, Facebook groups and support, taking her time, and a screen reader. She has found it helpful for the kids to use a braille typewriter. She copes by enjoying silence, drinking soda, prayer, social support, and dates with her husband. She recommends taking it one day at a time, letting the children go at their own pace, and reaching out to others.
Facebook: A Blind View by Ashley Wayne
National Federation for the blind
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 77: Shaping Our Children Through Reading With Guest Sara Bradford
In this episode, guest Sara Bradford discusses how children can benefit from reading children’s books about special needs. Her daughter has dyslexia and her older two children, as well as her husband, have autism. She discussed finding out during quarantine that her younger daughter has dyslexia, as school never picked it up. Sara chose to write children’s books about differences to make sure children could see themselves in the books, to explain the conditions they experience, and to provide information to other children. She also found it helpful, since she has physical differences as well, and was bullied for it as a child. She hopes to help discontinue bullying in future generations. Writing her books has inspired her daughter to publish her own book. Her books are written for children in preschool through third grade. Books such as this can help the children to understand their own emotional maturity and the emotional wellbeing of the children with special needs. She would recommend having the teachers read the books to the kids and having them in the class library. Parents can read them as bedtime stories and place them in community libraries.
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 76: Live Like Sean With Guest TJ Nelligan
In this episode, we discuss living like Sean; living your best life. When Sean was young, he was diagnosed with an intellectual disability. Guest TJ Nelligan initially began mourning the child he thought he was going to have. After that, life got busy managing doctor appointments, medications, and therapy appointments. A friend later told him about Special Olympics. TJ and Sean went to check it out and loved it. They and their entire family quickly became involved in the organization.
Through raising Sean, TJ learned lots of lessons. The first was to advocate for your child by heavily researching and visiting schools to find the right fit for your child and then get involved in that school. Will this school meet the needs of your child and maximize their ability through the school’s resources? When an issue arose, TJ never backed down.
Another lesson is be present. Sean always lived in the moment, which made everyone he met feel special and seen. By being present, Sean made lots of friends and enjoyed every moment of his life. It also led him to some really exciting experiences that wouldn’t have occurred had he not lived in the moment. Gratitude is another lesson. Sean only focused on his strengths, which led him to be a grateful person. Tying that with being in the moment, he woke up every day with a great outlook and enjoyed every day. Over time, this led TJ to see Sean’s strengths, rather than deficits. Sean taught TJ to be happy. Find your passion and it will bring you happiness. You can make your own happiness by being in the moment. Happiness is a journey, not a destination. Ignore the destination and work on the journey. To stay in the moment, TJ now focuses only on what he can accomplish that day. Allow your child to inspire you. For TJ, that was in part from the Special Olympics. He found that that organization and unified sports really helped. These led to so much more kindness. TJ found it important to include TJ and everything. Make sure the children have time around their peers and spend time in the community. Help your child find their passion.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 75: Hypoplastic Left Heart Syndrome With Guests Dr. Thomas Glenn and Tawanna Nishibayashi
In this episode, we discuss hypoplastic left heart syndrome. Dr. Thomas Glenn discussed that the condition is a congenital heart disease where the left side of the heart is underdeveloped. Nowadays, a diagnosis is done prenatally, but once kids are born, the diagnosis is confirmed via an echocardiogram. Doctors also test the saturation around the baby’s body before they go home to make sure the baby is ok. If the condition is not diagnosed prenatally, visible symptoms might include blue color to the child, changing breathing pattern, fast breathing, the child having a difficult time breathing, perfusion being different, mottling of extremities, and the child not feeding initially. This is a condition that can only be treated at 10-15 centers around the country, successfully, so it important to catch this condition early.
The main treatments are surgery, transplant, or palliative care. The three main surgeries include the Norwood, Glenn, and Fontan. The goal of these surgeries is to get the right side of the heart to do what the left side would have done and then to redirect the blood from the heart to the lungs. During the early periods, these kids are followed every week and have echocardiograms at least once a week. Medications are always needed. Parents need to be careful about the exposure the children have to other people during the interstage phase.
Dr. Glenn shared his personal experienced with Hypoplastic left heart syndrome. Tawanna Nishibayashi’s daughter Avery was also born with that condition. Tawanna shares Avery’s story. Avery had a complex case, fraught with complications, including needing a Berlin heart and a heart transplant with rejection, and injury to other bodily organs.
Some possible complications of the condition and surgery include involvement of the liver, kidney, and needing NG tubes for feeding. There is a possible need for a heart and liver transplant in adulthood. A lot of patients have to deal with PTSD, anxiety, and depression. These children may not grow as fast as their peers and may experience developmental delays. Factors contributing to this is frequent anesthesia, lower saturations, abnormal brain development in utero, and spending a lot of time in the hospital.
Tawanna recommends that once you have found out that your child has this condition, take time to process. Begin the morning process early (of a normal pregnancy, baby shower) and the death of normalcy. Process the length of time your child might be in the hospital. Learn the science as much as you can, including treatments, outcomes, mortality, conditions, centers, procedures, surgeons, care teams, follow up, and support. Be an advocate for your child. Develop a relationship with your team. Expect the unexpected and prepare for that as much as you can.
Quality of life is also an issue for children, including ICU psychosis, aspiration, feeding troubles, nausea, and trust issues. Moreover, parents often experience PTSD and CPTSD.
To prepare the children for medical appointments, cluster care, read books with them about the procedure, watch shows about doctors and shots, have the child hold the stethoscope, get their permission, let them know what to expect, bring their favorite things, and maintain a routine.
Be prepared for financial difficulty. Often, one parent is no longer able to work due to helping their child. Sometimes, neither parent can work, in order to care for the child. Treatments, procedures, medical equipment, medications, anything insurance doesn’t cover, outside therapies, hospital stays, home health nurses, parking, food, laundry, and groceries all factor into financial difficulties.
For advocacy, use your voice. Ask a lot of questions. Attend all the rounds. Spend a lot of time with your child. Have someone with your child as often as you can. Keep in touch with your support team, even while you are outpatient.
Being a medical mom can be very challenging, as it is intensive, time consuming, people might not understand, and you have less time for fun things. Expect the unexpected. Roll with the punches. Other coping strategies include hospital relationships, carving out your own quiet time, having a routine, learning to ask what you need, taking time outside of the hospital and get fresh air, yoga, and music therapy.
Links:
Dr. Glenn:
Tawanna:
Hypoplastic Left Heart Symptoms Facebook group
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica Temple
Episode 74: Special Education Law During Covid With Guest Catherine Michael
In this episode, we discuss special education law during COVID. Guest Catherine Michael, a special education lawyer, discusses that IEPs and services should not look different during COVID and that all services still need to be provided, although they may be offered in a slightly different format. Cases that have been coming up in 2020 relate to the child not being able to use distance learning due to cognitive impairments or not being able to use a mask due to health or cognitive issues.
For those children, schools are looking into therapeutic day placements or ABA facilities. For children who are missing a lot of school, they are also trying to use google hangouts or zoom meetings. To pay for other placements, schools can use their high cost funds, which is used for alternative placements. Some alternative placements are hiring more staff to accommodate these children and may even be offering a discounted rate. Some schools are having children work with behavior techs to assist with the online schooling.
If the children are not able to access online education and the schools refuse an alternate placement, the schools have to figure out a way to provide education. The IEP should still be fully implemented. If it is not, you can file a complaint with your state, a due process complaint. All therapies and services should still occur at the stated frequency in the IEP. Some school districts have started hiring people to come to the child’s home to provide the needed services. If the child has not been receiving the related services, the child may be owed compensatory education. Parents need to document what the child is not receiving and also any regressions. If a parent feels that the child is not being provided with the education he/she is required during COVID, a parent can write a letter to the school, do mediation, or file for due process.
The parent still has the right to have an evaluation for their child. If the parent doesn’t think the evaluation was comprehensive, the parent can request an independent evaluation. However, schools may ask to perform another evaluation on their own first.
She noted that although schools could always use more money, the problem is more poor allocation of money to the needed resources. She recommends that schools look at good charter schools as a model of ways to properly use resources.
The Exceptional Parent’s Guide to Special Education Law and Advocacy
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica and Lewis Temple
Episode 73: Special Education Services Across The World With Guest Jodi Samuels
In this episode, we discuss schooling across two continents for children with special needs. Jodi Samuel’s daughter Caila first began schooling in NYC schools, where she was provided with extensive services through the state. She was lucky in that all of her therapies were provided to her during the school day. She attended school in an open-minded community and accepting school. When Caila was 6, Jodi and her husband debated whether to move to NY suburbs vs Israel. In the end, they chose to move to Israel.
They had very little time to pack their bags and move to Israel. Jodi did not speak Hebrew, and teachers did not speak English. To communicate, she used the assistance of Google Translate, friends, neighbors, and her older children. Meetings with teachers and administrators was challenging. Since her daughter started school in Israel at such a young age, they immediately had to start looking for school for the following year. After the first year, finding schooling was challenging, because the first school they tried was a poor fit. Jodi had to go through 11 schools before one school finally accepted Caila. Jodi plans to bring in a consultant when looking for high schools for Caila to help her find choices and figure out what their rights are. School has become more difficult due to speech, cognitive, and language delay, more homework, and learning a new language. As she gets older, Caila spends less time in an inclusion class, depending on where she is educationally with that subject.
In Israel, Caila has an IEP, but does not receive many services in school. She has an in-school shadow 25 hours per week. Her private insurance pays for her other therapies, as schools in Israel tend not to believe in additional services within the school system unless a child is in a self-contained classroom. Due to this, Jodi had to become the CEO of Caila’s intervention team. She had to do a lot more driving Caila to therapies and she had to begin guiding everyone on Caila’s team.
Although Caila adjusted very quickly, socialization has been more difficult for Caila due to the way families and neighborhoods are set up. Although there has been no bullying, she has been excluded by a lot of peers.
Jodi has found that resources are much more limited in Israel. Finding therapies for Caila was easier than finding schooling, since they had already been using services from those places before they even moved to Israel. She found that social support networks have been key for learning valuable information about finding services for her daughter. She also discovered that natural born Israelis felt that people not from there expect too much and complain a lot and so therapists and staff tend not to communicate with parents much about the children.
To cope with being the coordinator of everything for Caila, Jodi recommends coffee and red wine. Find what gives you a boost and an outlet. She noted that creating a support network is mandatory, including a local, someone who speaks the language, other parents, and pioneers in that area. Don’t be scared to ask people for help. Utilize services from advocacy groups. Search for and use all the resources you can find. Use social media for your benefit. Use concierge services upon moving to a new country. Use consultants when you need them.
Guest Links:
Chutzpah, Wisdom, and Wine: The Journey of an Unstoppable Woman
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica and Lewis Temple
Episode 72: Free and Appropriate Public Education With Guest Dr. Steve Jacobson
In this episode, we discuss evaluations, FAPE, LRE, nonpublic placements, and giftedness. Guest Dr. Steve Jacobson suggests that if a parent feels something is wrong in the schools, they should talk to the teachers, then request a comprehensive evaluation in writing. Then the district gives something to the parents called a permission to evaluate. Even if a child has gotten an evaluation outside of the district, the school systems still have to do their own evaluation. The district will have 60 calendar days to complete the evaluation. If a district refuses to do an evaluation, let them know that you are thinking of talking to an attorney or plan on doing mediation and then they are more likely to do an evaluation.
It is most appropriate to ask for a private evaluation if you completely disagree with the school evaluation. If you already got an outside evaluation, all the school has to do is “consider it.” To increase your chances of it being met with an open mind by the school, let the school know all the outside services your child is receiving, get input from the teachers in some way during the outside evaluation, have your evaluator do an observation in the classroom, have the evaluator be a certified school psychologist, and make sure the evaluator is licensed in the state in which the child is attending school.
If the reports from the school vs the private evaluator are very discrepant and you and the school cannot come to an agreement, you can seek out an attorney, seek mediation, seek the assistance of an advocate, or do a due process hearing. If you ask a district for an outside evaluation, if they say no, they have to request a hearing to defend their decision. Sometimes, the district may agree to pay part of the evaluation or will require you to pick certain evaluators. You can ask to be paid ahead of time or after the fact.
FAPE: Free and appropriate public education. FAPE grants special education students rights that typical students do not have. These student are entitled to a certain level of quality of education, although appropriate doesn’t necessarily mean best. The placement has to be reasonably calculated to provide the child with benefit and meet the child’s needs. If a parent totally disagrees with the placement, the outcome depends on the reason for the disagreement. First, try to resolve it amicably if possible, and if that doesn’t work, one can do mediation or due process.
LRE: Least restrictive environment. Children with disabilities need to be educated with the max extent possible with non-disabled children. This varies by child. The max extent possible is often an inclusion classroom.
Nonpublic placement occurs when a school district is unable to provide the services needed for the child or unable to find an appropriate school system placement that meets the needs of the child of if a child is not progressing in the school system. To have your child enrolled in a nonpublic school, most hearing officers will not order a specific private school. If a school had provided the child with inappropriate education for a lengthy amount of time, the child will be owed compensatory education, which may result in nonpublic placement payment. Otherwise, a parent can start their child in a private school with their own money and the public school may reimburse the parents if the hearing officer agrees that the child needs a nonpublic placement.
Some states do not recognize giftedness. In the states that do, the children are still entitled to FAPE, and the district has to find them and find appropriate placements for the child. An IEP may still be required and must be individualized to that child. Sometimes there is a pullout gifted program. However, independent evaluations will not be paid for or reimbursed. There is also no tuition reimbursement. Moreover, there is also reimbursement for attorney fees for giftedness. The level of quality of a gifted education may vary. School districts have different ways of evaluating giftedness, and a child may not be considered gifted in each district.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2021 Jessica and Lewis Temple
Episode 71: Online Speech Therapy With Guest Leanne Sherred
In this episode, we discuss speech therapy in times of COVID for kiddos who are verbal or nonverbal. Guest Leanne Sherred created Expressable, an online speech therapy company, to provide easier access to speech therapy. Speech therapy online is very similar to in-person speech therapy, but can also use additional multimedia and more parent involvement. Online therapy must be decided on an individual basis, as it might be tougher to work on swallowing (to reduce risk of choking and aspiration), or assist children who have a lot of sensory-based needs and have difficulty engaging in sessions.
Pros as outlined by Leanne: Very similar to other speech visits, can be done at home on the schedule that works for them, research has supported for teletherapy, therapists can use other media things (screen share, draw on screen, videos, pictures, animations), sessions online are engaging for kids, also uses a parent as a facilitator to help keep the kid engaged, gets parents more involved in treatment, the therapist can provide more parent coaching, the convenience factor, obtain more consistent therapies, and greater ease of carrying over the skills to home and school.
Cons: May not be a good fit for every child, the family might have limited internet or device access.
For kids to get the most out of the session, parents should be really present during the sessions, have a good understanding of the goals for their child, should speak a lot with their child, and should tell the therapist where they need more help in assisting their child with language. To help in daily life, model, narrate what you see, use consistency, surround the child with speech and language, pause and give them a chance to speak, and be patient.
For children who are nonverbal or have not yet acquired language, online speech therapy is doable, but parents would need to become more involved in sessions. They may also use AAC devices or PECS or a switch.
In therapies, therapists will make a plan to include language and practice throughout the day, potentially use alternative communication modalities, will work parallel with a screen or story, ask/answer questions, work with parents to provide them cues for what to do to work with their kids, and teach the child how to use alternative communication systems if they are needed.
Guest Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Bonus Episode: Living With Auditory Processing Disorder
In this episode, Lewis discusses his experience with auditory processing disorder. Lewis was diagnosed with APD by an audiologist after a battery of tests. As a child, he would have difficulty understanding what his friends were saying to him, but he never knew why. In school, he had difficulty understanding what teachers were explaining. He performed better in classes that were more visually oriented. He had more difficulty understanding people in loud areas, and concerts were physically painful for his ears. At home, he misheard what his family was saying, on a regular basis. There was often miscommunication. Currently, APD continues to be challenging for him. At work, he has difficulty comprehending information provided to him at meetings, especially when there are background noises. At doctor appointments, he sometimes misses information or mixes up the information. When he talks to people on the phone, voices sound like gibberish. It is especially challenging when trying to understand his young children speaking, often in whining voices or talking over one another. Wearing headphones in noisy situations has really helped. Asking people to slow down also helps.
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 70: Auditory Processing Disorder With Guest Dr. Lilach Saperstein
In this episode, we discuss the ins and outs of auditory processing disorder (APD). Guest Dr. Lilach Saperstein noted that APD occurs when the brain can’t properly pick out what is important to hear vs what is noise. APD is more likely to occur in children that have other disorders, such as ADHD or autism, although another possible contributing factor is chronic ear infections between 0-3 years of age. Diagnosis is typically only made starting at age 7, but can be screened starting at age 5.
APD presents differently in each child. Common signs include inattention, not answering to their name, constantly saying “what,” “I didn’t hear you,” “did you call me?,” needing to repeat things to the child, the child not being engaged to sounds around them when it is noisy or busy but attends when it is quiet, and the child experiencing frustration in communicating. Before being diagnosed with APD, one must have had ruled out hearing difficulties and ADHD. It is strongly recommended that a child also have a psychoeducational evaluation, speech and language evaluation, and a medical checkup, and the audiologist will also gather information from the teacher and parent. Although only audiologists can diagnose APD, speech therapists most typically do the treatment.
Dr. Saperstein provided the following tips for managing APD:
Tips: Visual cues along with auditory cues
Visual schedules for routines
One direction at a time
Repeat information back verbatim
FM system in the classroom (mic to kid’s ear)
Learning an instrument
Preferential seating near front of the room, near the teacher
Pre-teaching key words of the lesson
Chunking information
Play Simon says (start slow, then speed up instructions)
Play chicken dance that gets faster and faster
Copy the beat
Written communication at school and work
Accommodations in the office
Listening to audio books and podcasts (slow down or speed up playback speed)
Guest Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 69: Our Crises of Faith
In this episode, Jessica and Lewis discuss their own crises of faith. Jessica’s faith varied throughout her lifetime but was strong before having children. After both kids were diagnosed with special needs, the Jewish community in which she lives, her son was kicked out of a Jewish day school (and also abused him), neglected at another Jewish day school, and the community excluded her family. She started to resent the quantity of holidays that she was unable to participate in, and the huge food restrictions that her children were required to follow, when they were already very picky eaters. After seeing the discrimination and huge lack of support, she lost her faith in her religion.
Lewis tried out different religions growing up before he decided on Judaism. He threw himself headfirst into the religion and became very observant. He felt disconcerted after one Jewish day school neglected his son, and again after the other one kicked his son out for having autism. He later saw how LGBT folks were treated in the Jewish community and using bad terms for them in the scriptures and it being outright forbidden. He started to do more research and didn’t like what he found. It was the last straw, because his deep down beliefs didn’t match up with the scriptures. This led to a lot of resentment toward religion and he lost his faith.
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 68: Living An Extraordinary Life With Guest Jodi Samuels
In this episode, we discuss living an extraordinary life and experiencing crises of faith. Guest Jodi Samuels’ youngest daughter Caila was born with Downs Syndrome. Although she had had testing ahead of time, it was never suggestive of Downs Syndrome, so the diagnosis came as a surprise. Jodi immediately jumped into activism. Once Caila was 2 years old, Jodi decided to place her in school at the same place her older symptoms were attending. However, her family was emphatically told Caila was not allowed to attend there. Jodi began to have community forums and reach out to the media, which led her to find her public voice.
She wanted to make sure that others received a positive message about special needs. She remained positive and proactive. Jodi took the approach of treating Caila as if she is neurotypical and Jodi has high expectations for her daughter. A lot of friends and family are accepting and accommodating of Caila. Jodi wanted to have her daughter in an inclusion classroom. However, most schools blindly said no. There was a lot of discrimination, even within the religious community. In sharing her experience, she found that a lot of parents went through similar experiences. Jodi has gone out of her way to live an extraordinary life even while raising a child with special needs.
She felt she had to choose between victim and victor, and chose to be the victor and live an extraordinary life. She defines this as living the life you want to and choose to live. She discourages living in complacency and mediocrity. The first step to thriving through a crisis is to believe that we can cope. Next, we need support. It is important to talk about what we are going through. Then put on a positive attitude and start taking steps. Being a supermom is having work, community, and family. She recommends making a to-do list and prioritizing things that have to get done. She also recommends scheduling in office time, home time, personal time, and family time. Delegating is really important, and don’t forget that we are allowed to say no. She also recommends coffee/caffeine and wine. Balance is key.
Throughout adulthood and parenting, Jodi has experienced a crisis of faith, especially when her daughter was not allowed to attend Jewish day schools. Her husband says “don’t judge Judaism by the Jews, judge it by the Torah.” She found her faith when she found more accepting communities. Finding role models that she respected was helpful.
Guest Links:
Chutzpah, Wisdom, and Wine: The Journey of an Unstoppable Woman
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 67: Bullying Prevention With Guest Dr. Claire Thomas-Duckwitz
In this episode, we discuss eliminating bullying against students with special needs. Guest Dr. Claire Thomas-Duckwitz defines bullying as being mean on purpose, imbalance of power, being one-sided, and happening over and over again. An enormous percentage of children with special needs reported being bullied in school, so it is even more important to have a bullying prevention program in schools. Bullying prevention programs should include weekly instruction around concepts, embedding those concepts into the classroom discussions, skill building, good/effective playground supervision, noticing good behaviors, communication between paraprofessionals and teachers, parent training and meetings, the school spending time on positive values, and having positive relationships with the students.
Parent education should include educating parents on what bullying is, sending home letters to parents of topics to think about, and training parents on how to be advocates for your kids. It is important that teachers get training on how to respond to bullying. Training kids how to be specific about their words, choosing the right moment to report it, training kids how to be upstanders, explaining to kids what the special needs are/mean and why certain behaviors occur, ensuring that there is no opportunity for retaliation, and adequate supervision of children in the halls are all key. Parents should use authoritative parenting and provide their children with warmth. Schools should have a clear written bullying policy, have an evidence based bullying curriculum, talk about what it means to be an upstander, have advocacy goals should be included in the IEP, teach what bullying is and isn’t and use precise language, teach children how to report mean behaviors, and teach them who to report bullying to. After the child has been bullied, validate their feelings, teach the kids to report the bullying, report the bullying yourself, and/or role play with your child what to do.
Links:
Links :
A Little Cerebral Podcast
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 66: Fetal Alcohol Spectrum Disorder With Guest Natalie Vecchione
In this episode, we discuss the ins and outs of Fetal Alcohol Spectrum Disorder. Guest Natalie Vecchione has an adopted son with FASD. Although it was not diagnosed at the time, he began showing signs of FASD very early on. Symptoms worsened around age 2, with symptoms such as additional sensory needs, attachment difficulties, speech regressions, delayed milestones, and sleep impairments. He started early intervention at an early age, but as he grew older, he no longer qualified for services. He started falling behind his peers at school. Her son has variable memory impairments, which change on a daily basis. As he grew, he also began exhibiting behavior difficulties, exacerbated by puberty.
Finding a support group for parents of children with FASD was very helpful for Natalie. Natalie found that doctors never mentioned FASD unless Natalie did, making it difficult to eventually find a diagnosis for her son. Once she got a diagnosis, she began to look into trainings about FASD. She found that brain based or neurobehavioral approaches worked best and were most effective for her son. She found that mental health first aid training was incredibly helpful. Executive functioning of is one main cognitive areas that is impaired in those with FASD. This can affect their developmental age, which is often lower than their chronological age.
Natalie discusses that there are different diagnoses under the FASD umbrella, but it is a whole body disorder. With fetal alcohol syndrome, a child might have certain facial features, shorter stature, smaller head circumference, sensory and mobility issues, and other medical issues. FASD is often very underdiagnosed. Common FASD symptoms include dysmaturity as children get older, variable memory impairments, hyperactivity, executive dysfunction, having difficulty with abstract thinking, reading difficulty, math difficulty, difficulty predicting outcomes, sensory difficulty, slower processing speed (auditory or visual), impulsivity, reduced social skills, anxiety, self-harm, and low self-esteem.
Symptoms can arise at any time during childhood. If parents see these signs in their children, parents should seek out an FASD clinic or a state or national FASD organization. For therapies, occupational and speech therapy tend to be most useful. Natalie also recommends that parents get neurobehavioral or brain based training. Accommodations are key for children with FASD. It is key to focus on the strengths of that child. Accommodations could include visual and tactile cues, extra time, extra emotional support, extra support, minimizing florescent lights, and/or keeping directions short and simple. It is incredibly important to create supports for these children.
Links:
Natalie’s Links:
"FASD Hope" Podcast (on Podbean, Spotify and most platforms)
Natalie Vecchione fasdhope1@gmail.com or info@fasdhope.com
Helpful Resources:
Homeschool Legal Defense Organization
FASD Book- "Trying Differently Rather Than Harder" by Diane Malbin, MSW
FASD Organizations-
Homeschooling with Special Needs-
Facebook Groups
Special Needs Homeschool
Homeschooling the FASD Way- A Global Community
Blue Collar Homeschool, Special Needs Homeschooling
Special Needs Homeschooling High School and Beyond
Websites For Homeschooling
Aubrey Page, FASD Educator & Trainer
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 65: Mindful Mama Mindful Child With Guest Josephine Atluri
In this episode, we discuss surviving quarantine with kids, while keeping your mind and relationships intact. Guest Josephine Atluri discusses tips to survive quarantine. She recommends giving yourself space and being flexible and kind to yourself. She suggests allowing yourself to feel your feelings. She reminds us that COVID is a marathon and not a sprint, and we can to cope differently than we initially did at the beginning. She highly recommends frequently utilizing breathing techniques, including box breathing, the ocean breath, or matching your inhale length to your exhale length, increasing by a second as often as you can. This helps change your moment from something negative to something positive. These are strategies that are great not only for parents, but also for kids of almost any age!
For parents who don’t get breaks during the day, during online learning, it is helpful to get creative and find ways to find short breaks, whether to do breathing exercises, using an online meditation app, or practicing affirmations. Jessica recommends doodling or using watercolor pencils or other short creative activities.
Quarantine has also been hard on marriage and relationships. To help strengthen relationships, Josephine recommends taking a date day/night/afternoon/hour and checking in about how each other’s days went, ideally once per week. Also, talking with friends, taking a few minutes alone, and doing mindfulness to tune into how you are feeling and also how your spouse is feeling.
For mindfulness for parents, Josephine recommends breathing techniques, affirmations, gratitude practices, and a body scan. Josephine offers guided meditation on her website too (see below). When getting started with meditation, start with short sessions, tie it to an existing ritual, and be flexible and kind to yourself.
To help your child engage in meditation, start modeling meditation, place importance of self-care for yourself, show them how you handle stress and overwhelm, make a gratitude journal, use affirmations, use chimes, follow audio guided meditations, engage in breathing exercises, do meditations with your children, and do walking meditations.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 64: Raising a Child With Down’s Syndrome Into Adulthood With Guest Yvonne Pierre
In this episode, we discuss raising a child with Down’s Syndrome into adulthood. Guest Yvonne Pierre’s youngest son, Zyon, was diagnosed with Down’s Syndrome shortly after he was born. He initially had digestive issues and the nurses went to evaluate him and suspected he had Downs Syndrome. This was confirmed later that day. Yvonne was initially devastated by the news, as she didn’t know anything about the condition. More than anything, she was wondering if her child was going to be ok. She is an open book, so she was open with her family and friends about her son’s condition. She also relied heavily on her faith and her love of her child. Everyone she told reacted in a different way. Some researched the conditions, some asked questions, and some reacted negatively.
She has found life with her son a blessing. She looks at everything as life lessons, such as how is she supposed to grow from this. Zyon was born 5 weeks early and has a mild heart murmur, which seems to have resolved. Speech has been Zyon’s biggest challenge, although he still struggles with digestive and skin issues. Zyon has a high tolerance for pain, so Yvonne needs to be really aware in order to pick up his cues to see if he is in pain.
His school experience has been varied and was dependent on the quality of the teachers. Due to teacher issues, Yvonne homeschooled Zyon for a year. Currently, Zyon has been transitioning to adulthood. He is wanting his privacy, starting to care what people think, and is starting to like girls. It has been challenging for Yvonne to know how to discuss dating and sex with her son. She has also been struggling to figure out how to discuss driving with him. She continues to work with her son on safety in the community. They are working on finding Zyon a job that maximizes his talents.
Yvonne has experienced some isolation throughout parenthood, but she has made sure everyone in her family is included in the community, which has helped. For self-care, she meditates, eats well, exercises together as a family, and prays as a family. She also works on having a positive outlook, even when things get hard. She recommends networking with other parents in your community and getting involved.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 63: Overcoming Special Needs Stigma with Guest Leah Moore
In this episode, we discuss self-care, coping, stigma, advocacy, and helpful teaching techniques that parents can use at home. Guest Leah Moore has 3 children with different needs. Her daughter Jordan was born with Cri Du Chat Syndrome. She began to lag behind developmentally, which led Leah to looking for a diagnosis for Jordan. Symptoms of this disorder can include a kitten-like cry, microcephaly, cognitive and developmental delays, hypotonia, require feeding tubes, and some children are unable to walk or talk. However, Jordan walks and talks but has some cognitive and social challenges. She also has epilepsy and some medical challenges.
Due to her husband being a carrier for Cri Du Chat Syndrome, Leah did IVF, and ended up having twins. One of her twins, Austin, had hydrocephalus at birth, although he never required neurosurgery. He does have learning disabilities, but is doing well. Her other twin, Oliver, started developing some spots on his skin at one point. His doctors were concerned that he had leukemia, so he had numerous procedures and tests. He was later instead diagnosed with ITP, idiopathic thrombocytopenia. He is generally healthy, but has a tendency to bleed more than other children would.
Leah found that she felt isolated during Jordan’s early years, as they were figuring out how to navigate the different needs. Leah also found it terrifying to manage all the needs at the same time. They learned to focus on the children as they were, and not focus on the appointments, and conditions, and paperwork that came with everything. She tries to just focus on who they are as people. When she tried to stop the sadness she was experiencing, she found that she squashed the joy, too. She wanted to remember that even in the worst time, there was still beautiful things happening every day. She found that reaching out to others and sharing her story was incredibly helpful for her. She uses writing as a huge outlet. She and her husband also take turns taking breaks. Keeping everything afloat is a challenge, but having a strong support system, starting psychotherapy, finding enjoyable hobbies, and relying on those tools when she needs them really help. She learned that she can’t be all things at all times. She struggled with finding her community, but she found them within social media, the Cri Du Chat community, and at conferences. She also connected with parents through her special education PTA and through her website.
During crazy times, it can be helpful to control what can be controlled. Leah works hard on basic self-care, like dressing fully for the day or dressing up, which really helps to boost her mood. She noticed that any one thing doesn’t work for everyone. Each person is an individual. She noticed that finding tiny ways to care for herself works best. She works hard to be mindful during her day.
Leah deals with stigma by educating others. She recommends reading books about differences and disabilities to help lessen stigma.
Through teaching an adaptive theater class, Leah learned the following:
- Use structure and visual calendars. Make sure your child knows what his/her days look like.
- Be purposeful with your transitions. Be detailed about what will happen. Provide choice within structure. Have transitions look the same each time, when possible.
- Pause and notice. Notice what is working and when there is an opportunity for more learning.
- Yes and. Instead of focusing on “no,” say yes to the direction the child is leading you, within reason.
- Every single person has a voice. Each child has an opinion about something.
Links:
Email us if you have any questions or ideas!
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Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
We also have a Facebook Page with updates about our podcast!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 62: Coping With Loss While Raising a Special Needs Child With Guest LaTanya Sothern
In this episode, we discuss navigating loss, while also raising a child with special needs. LaTanya Sothern's oldest son, Tre, was born with autism and a musculoskeletal disorder that required numerous surgeries. LaTanya discusses that she had 2 first trimester miscarriages before she gave birth to her oldest son. She got pregnant again when Tre was 3 years old. At that time, Tre always had numerous therapies and had to go to the hospital for appointments frequently. He was also receiving services through Infants and Toddlers. During LaTanya's second trimester, the perinatologist began noticing fetal anomalies in the babies. The baby was later diagnosed with Friends Syndrome. He had a diaphragmatic hernia and a cyst on the back of his head, both of which could be fatal. At 6 months gestation, LaTanya was given the option of terminating the birth, or having a traditional birth or a C-section. She chose not to terminate the pregnancy and switched obstetricians to a doctor who was across the street from the NICU hospital. She went into birth at 37 weeks. After Jay Raphael was born, he went straight to the NICU hospital. The hospital tried to keep his oxygen levels up, but he was only able to breathe with someone manually pumping air into his lungs, so the family decided it didn't make sense to continue rescue efforts. Due to having just had a c-section, LaTanya was not allowed to leave the hospital right after surgery. However, the other hospital allowed her husband to check the baby out of the hospital so he could bring the baby to her. She was able to hold her baby for a few minutes before he passed.
During her time with her son, she was still under the influence of medications, so it didn't hit her that she had lost her baby until late that night. Having a strong faith-based community of support really helped her to cope. At first, she felt like she lost herself. However, right before she had her loss, Tre had a prolonged hospital stay due to RSV and was in the ICU for 2 weeks. Then, her grandmother passed away. Then a month later, Tre needed major back surgery. So LaTanya had to focus heavily on Tre. She also had to return to work pretty quickly. This all gave her space to not dwell too much on her loss as much as she could have.
Additionally, Tre had lots of therapies and recovery time. Tre was making so many strides, that LaTanya spent all of her focus on Tre. Faith helped LaTanya a lot in coping with her loss. Tre also had a lot of help and people looking out for him. However, she still felt isolated, as there weren't a lot of resources for her at the time. She did a lot of questioning of her body. She later got together with friends and wrote a book about their losses. This helped her to realize that everyone processes loss differently.
Victory Through The Rainbow
Sothern Education Solutions
The Birth of An Advocate
Autism Speaks
Understood.org
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Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 61: Transition To Adulthood Part 2: Employment, Socialization, Self-Regulation, and Daily Living Skills With Guest Dr. Matt Segall
In this episode, returning guest Dr. Mall Segall discusses the nitty-gritty of the transition to adulthood in teens and young adults with autism, including employment, socialization, self-regulation, and daily living skills. When Dr. Segall works with his clients, who are adolescents and young adults with autism, before he sets goals with the client and works to meet those goals, he takes into account their age, developmental levels, the level of support needed, and who the client actually is (parent or child). He also takes into account the context/setting of the goals, such as the workplace, school-based, personal health, and wellness/at home. If he is working with the young adult, it is really important that the individual participates in goal setting, to have buy-in, or the goal is much less likely to be reached. Dr. Segall finds that the person-centered approach works best, where the young adult is at the center of treatment and they discuss that person's hopes, dreams, and goals. what is meaningful to them. That helps them to determine the skills and contexts they would like to work on. However, there can be some generalizations among skills and settings. The family perspective can also help guide the goals and treatment. Sometimes, going with the easiest goals that have the most buy-in and motivation can help the teen get the most out of treatment. This can help open up options for treatment in the long run.
One goal of huge importance is self-awareness especially if the client is not sure what goal to set. This begins with being aware of their diagnosis, psychoeducation about symptoms, discussing the daily challenges the client experiences due to having autism spectrum disorder (ASD), talking about their strengths, and even having the client participate in their own IEP meetings. Dr. Segall also will discuss how the person sees the world and how the world might see the client. They also discuss what strategies can help them. Parents can help the young adult work toward these goals by assisting with finding a social support network, finding things the young adult loves to do, and helping set up visual supports.
Emotion regulation is very important as well. We often teach the children emotions out of context, which can be ineffective. It is important to teach emotions and emotion regulation in the context in which they are most relevant. Emotional regulation and social interactions work hand in hand. Often, individuals are most dysregulated in experiences with other people, as social interactions can be emotionally provocative for those on the spectrum. A lot of times, social skills are present, but emotions are evoked. Dr. Segall helps the young adult to see if we change the environment or instead work on emotional or social coping skills. This would help them think about the context that they are in and then pull from their bank of toolboxes. Instead of appropriate and inappropriate behaviors, Dr. Segall recommends labeling behaviors as expected or unexpected behaviors, as what is expected is situational. This can help one discuss expected behaviors in certain situations, which can bring more awareness into a situation, and the young adult can see if they need to bring in more emotional regulation, behavioral regulation, or a strategy that lets them succeed at a higher level in that context.
Regarding daily living skills, Dr. Segall finds that younger clients are often not interested in working on these. He noted that the key is to start working on these goals young and build up to good habits and systems. It is useful to have family chore charts and rewards systems, then fade in new chores and goals or higher levels of independence. The earlier you start, the better habits we build in, and one can internalize responsibility and values. Parents can help by breaking down the tasks, using visual supports and lots of rewards, and modeling.
Social goals in young adults with autism can include focusing on developing interests that give access to peers, finding inclusive peers who are open to learning about diversity or other neurodiverse peers, and finding tasks they want to do to expand their social world. Sometimes a problem is not caused by a social skills deficit but that the person hasn't yet found the right place that "got it." Again, it can be helpful to teach expected and unexpected behaviors in different situations, then how to engage in those behaviors or be a self-advocate. The context of learning social skills is really important.
Employment is a huge area one might set goals in. To be successful at work, one needs to be aware of one's own behavior, have a plan, be organized, and have the stamina to engage in a workday and stay on task and complete tasks. Dr. Segall helps young adults plan and build routines, discover what the person would be interested in doing for a job, learn how to disclose about autism, and advocate in the workplace. He helps them learn how to ask for accommodations, which ones to ask for, and how to go about having these conversations. He often recommends that individuals look into autism-specific hiring initiatives, such as those through Microsoft or SAP. Regarding employment readiness, one can always find reasons they are not ready for employment. Dr. Segall instead recommends thinking about what opportunities will maximize one's strengths, talents, and abilities, where ASD challenges will least interfere, where challenges minimized, are where preferences are, and look there. His goals are to create as good a match as one can, know which supports one needs to put in place, and task a dignity of risk.
Links:
Emory Autism Center Education and Transition Services
The Peers Curriculum
Social Thinking
The Science of Making Friends
ADA
The Advice Project
Neurodiversity hub
Getting Hired
The Spectrum Careers
Autism At Work Roundtable
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 60: Injustices Of Special Education For Dyslexia In The Time Of COVID With Guest Micki Boas
In this episode, we discuss dyslexia in the school system and distance learning for children with learning disabilities. Guest Micki Boas has two children with dyslexia. She was able to get her oldest son services through early intervention but Micki started noticing a larger problem once he started 1st grade in a charter school. They had him assessed and he was diagnosed with ADHD and dyslexia, but the school only provided 30 minutes of reading support a week. It took 4 years of fighting, 4 lawyers, and 4 different school formats to get her older son the services he needed.
Due to the injustice she found, she wrote a book called One In Five to help educate parents on the USA school systems and to provide actionable and useful ways to help support their child’s education. There were three main tenants as to why the USA is in the education crisis that it is in:
1) Special education in the USA has been severely underfunded for 47 years.
2) There is a lack of early intervention. Most children are diagnosed with dyslexia years later than they should have been, putting them significantly behind in reading and education.
3) There is inadequate teacher training and not enough educators to work with students with dyslexia. They don’t have to choose the system that is a best fit for your child, as long as they use a structured system.
Now, with COVID, teachers are being trained on virtual tools and not on reading programs or special education. IEPs are still required to be fully followed. However, the treatments or education may not 100% translate via tele formats. With Zoom, reading has been more challenging for children with dyslexia. A lot of parents have purchased homeschooling reading programs to use as an adjunct to what the child learns in school. A lot of schools are also doing small group reading, small breakout rooms, using listen-to-read stories, and drilling sight words to teach reading. Although people are not conducting screenings or assessments in person, Micki recommends that you still have your child screened now, if needed, rather than waiting for COVID to end, as waiting could push services off for a long time.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 59: Sky Full Of Stars: Battling Murphy's Law in the Special Needs World With Guest Meg Apperson
In this episode, we discuss coping with life when everything that could go wrong, does go wrong. Guest Meg Apperson's daughter Avery was diagnosed with craniosynostosis during the latter part of Meg's pregnancy. They initially thought Meg had placenta previa and found this condition instead. Avery's skull was measuring several weeks behind the measurements of the rest of her body. Meg knew something was very wrong, although the nurse and doctor disagreed. They allowed her to see a specialist, who agreed with Meg that her daughter's condition was serious. After a few more tests, doctors found out that her daughter's condition was more severe than they had originally thought. This meant that not only was the skull and brain affected by this condition, but everything surrounding it could be as well. There could also be abnormalities in other areas of the body.
In order to prepare for Avery's birth, Meg did a ton of research. She wanted to be prepared for anything that she might experience after Avery was born. The unknowns started with the birth, as she and the doctors weren't sure what the safest type of birth would be for Avery. From the beginning, Meg listened to her intuition. With labor, she only had one contraction and came to the hospital, and two hours later, Avery was born. Had she not gone in when she did, her placental abruption would not have been found. Once Avery was born, there were so many unknowns as to what would work for treatment and what kinds of impairments she might have.
From the beginning, Avery had respiratory difficulties, so Meg only had a few short moments with Avery. Shortly after, Avery was transported to a hospital with a better-equipped NICU. Avery was in the NICU for 6 weeks before she went home. Avery made it 3 days at home before she decompensated and needed another NICU stay. She was home for another 10 days before she had to go back to the hospital. She required a g-tube early on, and a trach not too long after. Complications in the first year included hydrocephalus, feeding issues, respiratory failure, staph in her trach, eye problems, shunt malfunctions leading to a coma, and septic shock. She underwent cranial vault remodeling and other various cranial and brain surgeries. Doctors also found a Chiari Malformation. She coded frequently and required a ventilator. It was a long and painful ride for her and her family.
During every admission, doctors hemmed and hawed about what to do and there was never a consensus about anything. Doctors would never commit to causes or treatments of any complication. Doctors kept trying to delay treatments and surgeries, to the extreme detriment of Avery. Numerous times, she became more ill due to the inaction of the doctor. Due to this, poor Avery had numerous additional complications that never should have occurred. In order to save Avery's life, Meg stuck up for Avery and advocated very heavily for the care she felt Avery required to live. To add to all of this, while Avery was still sick, Meg found out that her son Macson had a serious heart defect and needed almost immediate surgery.
Meg found advocating for Avery very difficult at first because she dislikes confrontation. Over time, she learned to trust her instincts and she had done enough research to know she could stand up for her daughter. The more times she was right, the more confident she became. Meg has become an unbelievable and inspiring advocate for her daughter and through this, she has saved her daughter's life many times. Meg recommends doing research about your child's condition and ask every question you have. Write it down and ask all the questions, write the answers down, and ask doctors to clarify if you don't understand.
For Meg to cope, she wanted to research everything and get all the information she could, in order to advocate for Avery. Writing and blogging were also very cathartic for her. Facebook groups for Avery's conditions were helpful for learning information and gaining a community. Seeing pictures of other kids with similar conditions also helped, as she could see that there were happy times in the future.
Over the years, her coping strategies have changed. She tends to go with the flow, have faith, and let minor concerns go. Meg kept trying to go at a crazy pace, but her body started to protest. Meg had been running on adrenaline, but after a while, her body couldn't do it. To take care of herself, she gets lots of sleep, uses good sleep hygiene, does a lot of writing, has stopped drinking coffee, and uses positive self-talk.
Links:
Instagram
Blog
Sky Full Of Stars
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 58: Standing Strong For Your Child With Guest Jessica Barisano
In this episode, we discuss bumpy journeys to diagnosis and treatment, advocating for your children, and making lemonade out of lemons. Guest Jessica Barisano noticed differences in her son early on, but doctors thought it was just lactose intolerance. It took seeing numerous pediatricians over 3 years for him to be properly diagnosed with a genetic growth disorder. This diagnosis opened up a whole new world, and Trent, her son, saw a slew of different doctors. He was later also diagnosed with Autism, ADHD, developmental delays, speech delays, and vision impairment. Having a diagnosis was helpful for Jessica, as she knew her son had something going on and it was relieving and validating that her motherly instincts had been correct.
The first order of treatment was hormone injections, which he will need for the rest of his life. Trent hates the nightly injection but he deals with it as best he can. Once they had the diagnosis of autism, Trent started applied behavioral analysis, which then helped him to engage in occupational and speech therapies. He is currently getting all of his therapies through the school system, including behavioral therapy and speech therapy. Although getting diagnoses was difficult for Jessica and Trent, therapies went quite smoothly, since the therapists were in the same hospital system.
School, however, was a different story. It was the hardest challenge for Jessica and Trent. Trent started daycare at age 1. It was painful for Jessica to see neurotypical children meeting their milestones, while Trent was not. Whenever she picked her son up, Jessica was given behavioral reports. Trent was asked to leave several schools, including private schools, charter schools, and faith-based schools due to behaviors that were beyond his control. Schools were not willing to work with Trent and Jessica. Trent started public school partway through Kindergarten, and it has gone well for him ever since. However, his earlier experiences had really affected his self-esteem. The public school system was able to provide them the proper IEP for Trent and was able to provide him the supports he needed to be successful in school.
Jessica initially went with what the doctors said until her son was finally correctly diagnosed. Once he was, she realized how she could advocate for her son, and began to be a huge advocate for her son. She armed herself with preparation, research, and questions. Jessica always recommends making sure to have the “right team,” meaning the best doctors and therapists for your child. This may mean going through different doctors and therapists, but it is imperative to find the right fit for your child. It is very important to find a connection with each doctor and therapist. Just know, it may take a few sessions with that person to know if it is a good fit or not. To find helpful resources, as your child’s therapists, as they have all the inside scoop on resources.
Links:
Email us if you have any questions or ideas!
Check out updates on our website.
Check us out on Facebook and join our parent group!
Check out our podcast Facebook page!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 57 : Opposite Ends of The Spectrum With Guest Michele Doss
In this episode, we discuss opposite ends of the special needs spectrum: from nonverbal to giftedness. Guest Michele Doss's oldest child is gifted, her youngest child has autism and epilepsy and is mostly nonverbal, and her middle child has oppositional defiant disorder, has been kicked out of school twice, and is currently homeschooled.
Her youngest son was born with a lot of health issues. He had severe allergies to most of the foods Michele ate during breastfeeding. Once, after she ate cheese dip, he went into anaphalactic shock. Then, when he was 10 months old, he started exhibiting unusual movements and he was later diagnosed with epilepsy (myclonic epilepsy). For the next 2 years, he had up to 30 seizures a day. Her son started in early intervention very early. Because he was involved in early intervention, the state paid for his autism evaluation. He was diagnosed with autism around age 2. He started speech therapy very early through early intervention. At the time, he would repeat what he heard, but would not communicate in any meaningful way. After turning 3, he was enrolled in public school. While at school, he started eloping frequently, but due to not being able to communicate, he couldn't tell anyone his name or the name of his mother, which was very scary to Michele. After that, they started working heavily on speech to improve safety. Her son is now able to say a few important words. He has worked very hard in speech therapy and applied behavioral analysis. Her youngest son has been in both public school and home schooled, but ended up requiring a private school for his special needs.
In order to help with eloping while he is at home, she made sure all of her doors at home lock from the inside, and in order to get out, one needs a key. Their backyard is fenced in and there are padlocks on their gates. Now when they go out, they use their service dog, who is attached to her son. However, they don't go out a lot due to the risk of elopement.
For language, they initially tried the PECS system, but it wasn't a good fit for him. They used proloquo2go for a long time. Now, to help make sure he can communicate his needs, they talk with him face to face and make sure they take the time to let him say what he needs to say. ABA helped them realize they needed to give him time to process what they are saying and use fewer words, so that he understands what is being asked of him or said to him. It is hard to take him to the doctor because he can't communicate that he doesn't want to be there, doesn't understand why they are there, and that he is afraid. So she takes her other 2 children as well in order to help. When they go out in public and he has a tantrum, it has been hard for the family because other people don't understand why a teenager would have a tantrum. Other people have said things to her under their breath.
Her son's epilepsy is now well managed, although it took 5-6 years to find the right medicine for him. During COVID, he has started having more seizures. He now has a different type of seizures, call gelastic seizures, where he he starts laughing hysterically out of nowhere and when they stop, he falls right asleep. Due to the seizures, they limit where they go, because certain things, such as the lighting, can trigger seizures.
Her 16 year old son is gifted. He started putting letters in alphabetical order at 8 months old and was reading at 2. In elementary school, the teachers suggested he be assessed for giftedness. During testing for school placement, he passed the giftedness test. He started on the gifted route in 5th grade. When he was young, they needed to keep him busy because he was always thinking. He led the boy scouts for his age group, did sports for a while (until he got a concussion). To help keep him stimulated, he has taken all honors and AP classes. In middle school, he took 4 high school classes, so he was essentially a year ahead when he started high school. This upcoming year, he will be dual enrolled in high school and college. Although he also has sensory processing disorder, he never needed an IEP or 504 plan.
If you suspect your child is gifted, Michele recommends keeping in touch with the teachers to see if they think the child should be tested or keep them involved in different activities in the classroom to keep stimulated and engaged in school. As they get older, make sure they are challenged, so they can stay on task.
Michele recently got involved with education consulting, where she talks with parents who have kids with different needs, and helps them find out what is going on and how to tailor education to the child's needs. She guides the parents through the steps to find out what the child needs help with and to find different pathways for the child to learn. She helps find options for the children. She recommends finding a support network for you and your children as well as finding activities and groups for your kids to try out and become engaged in.
Links for Michele:
Website
Facebook
Instagram
Proloquo2Go
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check out our Facebook Page!
Check us out on Facebook and join our parent group!
We are also on Pinterest!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 56: The Invisible Disability With Guest Bonnie Wiscombe
In this episode, we discuss the unique challenges that come with kids who don’t “look” like they have special needs but still need extra patience and consideration. Guest Bonnie Wiscombe homeschools all of her 9 children. Her daughter Vivian has special needs. Vivian is a twin, but her twin doesn't have special needs. This made it easier to pick up on the disabilities more easily. Her milestones were a lot more delayed than her twin's. Vivian has always been homeschooled, but for a few years, she was able to attend public school one day a week, which helped to get her an IEP and resources through the school system.
Vivian was diagnosed with a learning disability in kindergarten. Her teacher had brought numerous concerns to Bonnie's attention, and so Bonnie got Vivian assessed through the school district. The school did evaluations for occupational and speech therapy. However, they weren't able to provide a clear-cut diagnosis. Vivian was diagnosed with learning delays. Her daughter also did very in depth testing with the psychologist and was diagnosed with ADHD as well. The psychologist afterward recommended medication to help with attention, which Bonnie chose to help her daughter with symptoms of ADHD. This has been very helpful in assisting her daughter in making progress with her learning disability. Her daughter was having difficulty not only academically but with attention, playing with others, and transitions from one activity to another.
She was provided with an IEP early on in schooling. However, she moved to a new district recently, and has been doing only homeschooling, so she does not currently have an IEP. However, when she did have an IEP, they took good data and they re-evaluated Vivian every few months, so they could see continued progress. Vivian is currently seeing a dyslexia tutor to help with learning disabilities, which is helping tremendously.
When her daughter is around other kids or families, Bonnie makes sure to communicate with the other parents about what Vivian is going through and what to expect. She asks others to offer warnings to Vivian before ending an activity. Bonnie has struggled with Vivian's peers being mean to her. Therefore, Bonnie tries to explain things to the children in an appropriate way and ask for patience with Vivian. Bonnie also does role plays with her daughter to help Vivian learn how to interact positively with other children.
Links for Bonnie:
Blog
Clothing Business
Podcast
Instagram
ST Math
Dyslexia Pros
Lindamood Bell System
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check out our Facebook Page!
Check us out on Facebook and join our parent group!
We are also on Pinterest!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 55: Diagnosis and Treatment Across The World With Guests Jao and Jyothi Tekwani
In this episode, we discuss we discuss growing up with disabilities in different countries and continents, and how that affects diagnosis and treatment, as well as the stigma related to having a disability. Guests Jao and Jyothi Tekwani's daughter was diagnosed with Cerebral Palsy both in India and in Miami. In India, she was able to see any doctor her parents chose and was able to see them within a few days of calling. Her parents moved to Curacao when she was 2 years old. In Miami, she got surgery on a tendon and has been using splints and inserts in her shoes for her feet. She also has obtained physical, occupational, and speech therapy. Her parents noted that since they moved, India now uses private insurance. Curacao has state sponsored insurance and organized therapies, and their country subsidizes the treatments. She noted that India now has a bigger and more supportive disability community than it used to. India is also now becoming wheelchair friendly. They have found strong support in both countries. However, although people are helpful, families in Curacao tend not to take their disabled children out of the house very often.
Links:
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check out our Facebook Page!
Check us out on Facebook and join our parent group!
We are also on Pinterest!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 54: Searching For Diagnosis and Treatment With Guest Keikilani Jackson
In this episode, we discuss having difficulty getting proper diagnosis and treatment. Guest Keikilani Jackson noticed differences in her youngest children as early as 3 weeks. However, doctors told her that there was no problem with them and that she should not be concerned. Keikilani continued to notice difficulties throughout her daughters' early years. Her daughters were tested for Autism a few times and were found not to have ASD. However, doctors didn't know what was going on. They just kept giving Keikilani parenting advice. She finally saw a therapist who diagnosed her children with sensory processing disorder. They were later diagnosed with ADHD.
In order to get treatment for her children, she and the doctors had to find numerous workarounds to get the diagnosis and treatment that her children require. The symptoms of ADHD and sensory processing disorder were affecting life for her children both at home and school, and Keikilani wanted to find help for them. She found information and resources from Facebook groups and searching information on the internet. Some days, she had to just google providers and call them and hope they could see her and would take her insurance.
The school didn't really help her find a diagnosis or resources. Her children were finally accepted for special education, but the school has not yet implemented any strategies to help her children. However, the school plans to implement numerous sensory strategies next year. Her daughters are currently in occupational therapy to help manage sensory processing disorder. The therapist comes to their house and teaches Keikilani how to help meet the sensory needs of her daughters. She is trying to get behavior therapy for her daughters but either insurance won't cover services or the fee for services is too high. She has found that appealing insurance denials has been very helpful in obtaining needed services.
Links for Keikilani:
Blog
Instagram
Facebook
Foster Care & Adoption Resource
Email
Thrive Skilled Pediatric Care
Why Mommy Drinks
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check out our Facebook Page!
Check us out on Facebook and join our parent group!
We are also on Pinterest!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 53: Understanding Special Education Law With Guest Jennifer Price
In this episode, we discuss special education law. A special needs attorney is someone who represents the child/family and can consult with the family, help facilitate an IEP meeting, file a due process complaint, and/or can negotiate settlements to ensure that the child is getting the education he/she is supposed to get. A parent may need a special needs attorney if parents have requested in writing an evaluation and they haven't been provided one or if the school continues not to comply with the IEP. One can find a special needs attorney by doing a google search, or using COPAA. When looking for a special needs attorney, you should look for someone who understands the situation you are going through, comprehends your emotional state, and is still able to explains the law and gets the best results they can get. It is highly recommended that parents don't go to the IEP meetings by themselves, in order to have emotional support and to have someone take notes for them.
Start with Child Find and then get an evaluation through the school or have one done on your own outside of the school. However, schools do not have to accept outside diagnoses or evaluations. You can always choose to challenge the conclusion to the school evaluation and request an independent evaluation. A lot of times, the school doesn't accept the diagnosis because they cannot or choose not to provided accommodations or services related to that diagnosis. Make sure IEP goals are measurable goals, so teachers can take data and provide you with progress updates, so you are making sure they are following the IEP goals and that your child is meeting his goals.
When a parent disagrees with the IEP or the classroom placement, you should start out with a conversation with the team. Make sure to document this with a follow up email summary. If this doesn't work, you can file a due process complaint requesting a hearing, you can do mediation, or you can request a facilitated IEP meeting. A due process hearing is a legal hearing with an impartial hearing officer who hears the evidence, with witnesses on both sides who testify. It is just like a regular court case; you get the decision via email but it is a legally binding decision, which can be appealed. Mediation is a process with a meeting with a neutral mediator who sees if a negotiated settlement can be reached. A facilitated IEP meeting is when you want an IEP meeting to resolve outstanding issues but you feeling like communication is poor and you ask the office of dispute resolution to facilitate the meeting. If a parent feels that their child's rights have been violated, you can also file for a due process hearing. If you lose, you can appeal to federal court.
Links for Attorney Price:
Website 1
Website 2
Twitter
Instagram
Facebook
Council Of Parent Attorneys and Advocates
Don't IEP Alone
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check out our Facebook Page!
Check us out on Facebook and join our parent group!
We are also on Pinterest!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 52: Implementing The IEP With Guest Anna Distefano
In this episode, we discuss the nitty gritty of implementing your child's IEP. Guest Anna Distefano noted that a child can be "flagged" for special education in preschool. Before even having an IEP meeting, the child's teacher is supposed to take data, gather information, observational and anecdotal information and get a sense for where the child is having difficulty and then bring that information to the parent. During the IEP meeting, parents should ask what their child's day looks like. Parents should make sure that it is a day that the child can actually handle. Sometimes, when children are in special education classes, their days are very busy because they are not only in classes, but they are in numerous therapies as well, with lots of transitions.
The teacher and specialist should have an idea of what setting would be the most apporpriate for the child. In an inclusion classroom, the teacher should be able to provide differentiated instruction and scaffolded work to make sure that the child can access the information. This works best when the general education and special education teacher work together. When there is an aide in the classroom, the goal is that the aide should make sure the class is set up to let the child be as independent as possible and the aide should jump in as needed. Inclusion is more difficult in upper grades because the curriculum and content becomes more difficult. Therefore, the child may benefit more from being in a special education class for some classes and in inclusion classes for other subjects. The purpose of inclusion classrooms vary by child. This could be to learn academics, social skills, gross motor skills, or something else.
You have the right to observe your child in his/her classroom to see if your child is appropriately accessing their education in their self-contained or inclusion classroom. Schools and teachers should be taking consistent data on the child for the IEP goals. This can help the parent and team see if the IEP is being implemented properly and to see if it is working. Each teacher that works with the child should be taking data for the child in some way. However, there are many ways to take this data.
Teacher should have the training to be able to implement the IEP.
Parents should be getting progress reports every quarter. These reports should show progress on each goal. If not, it may be helpful to call an IEP meeting to figure out what to do. If the child has mastered a goal, it can also be helpful to call a meeting to update the goals to go to the next level.
Links For Anna:
Twitter
Instagram
Facebook
LinkedIn
Website
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check out our Facebook Page!
Check us out on Facebook and join our parent group!
We are also on Pinterest!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 51: Coping With NICU Stays While Abroad With Guest April Wilhelm
In this episode, we discuss managing NICU stays while attempting to return home abroad and also managing your newborn's special needs. Guest April Wilhelm was living in Japan, where her Navy husband was stationed. She went to visit her family in the States before giving birth. As she was on the way to the airport to return home, she went into labor! She thought she was experiencing Braxton Hicks, but her husband recommended that she get checked out by her doctor. She went to the ER, only to find out that she actually was in labor! Her water broke at 26 weeks. She had to transfer hospitals to one where they felt comfortable taking care of preemie babies. She gave birth 2-3 days later. Her daughter was in the NICU for 90 days.
For April, the NICU stay was really hard because she had nowhere to stay, and had to change hotels every few days. She also didn't have a car for transportation. Plus, her older son was with her and needed to stay with someone and attend school, since he was nowhere near his school. Eventually, she found a space at the Ronald McDonald House. Her husband was still on active duty, and could get a call from his command and would have to leave immediately. Her daughter's condition was also tenuous. Therefore, of course, April really struggled to cope. April experienced a lot of guilt in the NICU, because if her child was having a good day, another child might not be.
The Ronald McDonald House was really helpful to help April cope, because it was a positive atmosphere and the other parents often reached out to her. At the house, they provided counselors and cooked for her, and always asked how her daughter was doing. At the hospital, the resource and support center was able to help get her son enrolled in school. They helped her find cool places to eat, and gave her free bus passes to help her explore the city. After her daughter was released from the hospital, her family was unable to return to Japan, because there were very strict regulations and restrictions regarding health, and her daughter was deemed too sick to return. Her husband was transferred to San Diego, where her daughter would be able to get excellent care for her health conditions.
Currently, her daughter is experiencing developmental delays, but is making gains across the board. Her daughter was born with underdeveloped lungs, with subsequent chronic lung disease, due to being born so early, and she also heart heart defects. Her daughter is 17 months old and she still uses oxygen at night to reduce apneas. She also gets a shot every month to protect her lungs and her immune system. April has an older son, who goes to school. Unfortunately, if he brings illnesses home from school, her daughter's cold turns into pneumonia.
Reaching out to other people who understand what it is like was very helpful to April. Counseling has also been helpful. Having an outlet, such as work, was very useful.
Links:
Instagram
Ronald McDonald House
Calm App
BuzzFeed Hot Mess Mom Video
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check out our Facebook Page!
Check us out on Facebook and join our parent group!
We are also on Pinterest!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 50: Finding Special Needs Resources With Guest Contessa Louise Cooper
In this episode, we discuss having adult children with autism and developing resources for others. Guest Contessa Louise Cooper was a young mom. Her son was born at 34 weeks and had a NICU stay. She knew early on that he had special needs, but back when he was born, there were no diagnostic resources, so he wasn't diagnosed with autism until age 9. She noted that back in the 1980's and 1990's, there were no resources, guidance, therapies, or help for her. She had to trust her gut and her maternal instincts and do the best she could for her son. She chose to take him out of traditional high school and instead have him do a work-study program to prepare him for the work world. This program had him try a different job every semester. However, even working with 5 job coaches, there were no jobs available to him and the job coaches were not able to help. Unfortunately, if there were jobs available, he would have to work with another person to provide support for him, and this would lead to a significant added expense. Additionally, there is a very long wait list for jobs such as these. Contessa had just gotten her son into a weekly social outing group, which is now canceled due to COVID.
She noted that four things help her cope. Puberty allowed her son to calm, which led to a reduced number of outbursts. She lets her son he as independent at her can be. She also got to know her son very well and makes sure that he gets what he needs. She also learned to pick and choose her battles and only enforces the more important rules.
For a long time, she experienced terrible isolation. She didn't know anyone else who had children with autism. Other parents didn't want their kids to her around her son because they though their children would "catch" autism. Or, the didn't want their children to be around her son's behaviors. She also noticed that people talked about her and her son behind their backs. The saving grace was one of her son's teachers, who ended up adopting a child with special needs. Having someone that she could share everything with greatly helped to lessen her isolation.
Links for Contessa:
MAA Center
Unpuzzled
Her Website
Instagram
Twitter
Facebook
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check out our Facebook Page!
Check us out on Facebook and join our parent group!
We are also on Pinterest!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 49: Beating Burnout in 2020
In this episode, we discuss beating burnout in this crazy year of 2020. Burnout can happen in many ways but is super common due to crazy work schedules or raising children with numerous special needs. We discuss the signs and symptoms of burnout, as well as our experiences with burnout. Jess speaks about the easy ways to beat burnout, including:
- Staying social and finding support.
- Delegating and saying no, when possible.
- Make healthy choices.
- Engage in pleasurable activities on a daily basis.
- Use relaxation strategies like slowed deep breathing, body scan, or mental vacations.
- Bring back creativity!
- And, of course, mindfulness!
Email us if you have any questions or ideas!
Check out updates on our website.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 48 : Supermom Is Getting Burnt Out With Guest Torie Henderson
In this episode, we discuss burnout in special needs parents and how to combat burnout. Guest Torie Henderson defines supermoms as moms who try really hard to do everything right, so they get exhausted and they put the children's needs before their own. Torie discusses 4 stages of burnout. The first stage is when you are all in, putting the supermom cape on and throwing yourself into trying to fix the problem. But we can't stay in that stage, as we need to take time to ourselves, or we will continue to burn out. The second stage is self-care wear, where your children are thriving but you are dragging, your health and exercise has dwindled, and you feel guilty if you take a break. Your to-do list is dragging you throughout your day. We start sneaking in indulgences, like watching more TV, drinking more alcohol, or eating more food. Stage 3 is being chronically cranky. You always wake up tired and are always grumpy. You are snappy and impatient and can't get into a good mood. You always feel burdened and look for someone to blame (often ourselves or our spouse). Everything feels overwhelming. Happy people annoy you. Stage 4 is full burnout, where you are going through the motions but don't feel alive. You don't even know what you like or what you miss anymore. You don't feel like yourself anymore. This is when the hospital fantasies kick in. We get to stage 4 by not taking care of ourselves and not asking ourselves what we need.
To combat burnout, Torie recommends writing yourself a letter from your future child thanking you for all the wonderful things you have done for the child and then reading it whenever you need to see it. It is important to be getting as much as you are giving, in order not to get burnt out. We need to do self-care things that let us surrender, like yoga, massage, or chiropractic. Torie also recommends writing in a journal, which can help you stay in touch with yourself and see what is going on in your head/doing brain dump. This can help you figure out what you are feeling and what you want at that moment. You can fantasize about all the things you want your life to be in the future. It helps you figure out what could be next for you and to remember that you have an identity that is separate from your kids. It helps you find out what can fill your cup back up. When you are moving toward or are already in burnout, life coaching can be helpful. Self-care is very important, but moments or rituals of pleasure are key. If you can take some time away from the house, even for a short period of time, it can help as well, because it is hard for us to focus on ourselves when others are around. Getting outside can help a lot. Work on prioritizing what is important to you. If people don't have the time or money for self-care, it is time to remember that "you have to, you need to, and you should" take care of yourself in any way you can. We need to remember that we have choices and that everything we do is a choice, even if it is something that doesn't feel good or has negative consequences. This gives us empowerment.
Links for Torie:
Website
Journal Prompt
Facebook Page
Facebook Group - Supermom is Getting Tired
Supermom is Getting Tired Podcast
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check out our Facebook Page!
Check us out on Facebook and join our parent group!
We are also on Pinterest!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 47: Emotion Regulation in Children With ADHD and Autism With Guest Dr. Claire Thomas-Duckwitz
In this episode, we discuss emotion regulation in children with ADHD and autism. Guest Dr. Claire Thomas-Duckwitz discusses that emotion regulation means managing strong emotions. Emotions have two parts: the physiological aspect and the subjective feeling state. To regulate emotions, you need to notice them and then manage them. Emotion dyregulation is defined as not effectively managing strong emotions. There are two types of behaviors that stem from emotion dysregulation: internalizing and externalizing behaviors. Internalizing behaviors are when one holds the emotions in, and this may look like anxiety and depression. A person might withdraw, and have headaches, stomacheaches, and/or dizziness. Externalizing behaviors happen when one expresses emotions outwardly, such as verbal or physical aggression.
It is important to note that all emotions have purpose. There is no such thing as good or bad emotions, just comfortable and uncomfortable emotions. Subtle emotions come first, and then the big ones, but we tend not to pay attention to the subtle ones, which we also need to pay attention to. It is important to note that emotions are transient. One can imagine that emotions are like clouds in the sky and just move on by. She recommends observing negative self talk and replacing it with realistic self-talk.
To prevent dysregulation, practicing mindfulness is very helpful. Mindfulness is being aware of your body in the moment, without judging your feelings or thoughts. It can bring permanent positive changes in the brain. Dr. Thomas-Duckwitz usually has her students use different mindfulness apps, as they provide needed structure. She recommends engaging in daily mindfulness. It is important for parents to help cue the children, because children often forget. One can use strategies such as noticing your breath or being mindfulness of sounds, or 54321 grounding. 54321 grounding is the following: noticing 5 things you see, 4 things you hear, 3 things you feel, 2 things you smell, and 1 thing you taste. She recommends using this strategy when one is experiencing strong emotions to get one back in the moment. If one is noticing that their mind is wandering during mindfulness practice, she recommends thinking "oops" and then bringing their mind back to breathing. Parents of children with autism can find and read social stories for mindfulness to their children to help them learn the strategies. She also recommends using biofeedback strategies.
There are lots of things that parents can do to help their children with emotion regulation. First, parents need to regulate their own emotions. We can show our emotions and then model/explain what we are doing to manage them; in other words, narrate our experience. If we "mess up," we can tell our children what we should have done instead. Parents can also cue their children to engage in mindfulness and biofeedback strategies. Parents can also help children notice the child's strong emotions in the moment. We can help in other moments by naming subjective feeling states.
Links :
Links :
A Little Cerebral Podcast
Facebook
Twitter
Website
Second Step
Committee for Children
Smiley Minds App
Mightier
Whole Brain Child
DBT Self Help
Headspace App
Think Social
Everyday Speech
No Drama Discipline
Dr. Ross Greene
Research on why mindfulness works:
Paper 1
Paper 2
Paper 3
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check out our Facebook Page!
Check us out on Facebook and join our parent group!
We are also on Pinterest!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 46: Advocating While Having Cerebral Palsy With Guest Win Charles
In this episode, we discuss growing up with cerebral palsy. Guest Win Charles is a CP advocate, retired education, writer, and podcaster for 3 podcasts. Win knew at age 6 that she was different from her peers, but she didn't know how. She was treated as able-bodied in school up until high school and was never treated any differently than her other classmates. She was only told she had "CP" on the first day 7th grade. She did further research on CP in high school, but didn't discover that she had cerebral palsy until her 20's, as it was always called "CP" and no one ever explained further to her. When she was initially told she had CP, she became sick to her stomach, but her mother wouldn't let her stay home from school that day. Later, high school was very hard for her. She was in inclusion classes in all classes until 8th grade and didn't enter any special education until high school. Kids would knock her over in high school, as they didn't watch out for her. Unfortunately, people are still not always nice in adulthood, and still occasionally stare.
Win was not provided with any assistance with transition to adulthood. She had to approach the rehab faclities for assistance, find resources for herself, and had to do a lot of research for herself. Win wishes her mom realized how difficul day-to-day living was for Win. Her mother was her primary caregiver until Win was 14, and then others became caregivers for Win as well. Win had therapies from the time she was born, however. As an adult, Win is doing alternative therapies, which unfortunately, insurance doesn't cover. Win wishes that her mother had sent her to better PTs when she was younger and had better at-home therapy programs. She wishes that medical technology were better back when she was born. Win recommends that once a person receives a diagnosis, parents should ask lots of questions, and do as much research as they can on the condition. For teens, make sure they get involved in Vocational Rehabilitation or find them a job coach. Win also found United Cerebral Palsy Association helpful. Win recommends that parents try to grow a strong social support network for themselves and their children.
Links:
Website
Ask Win Podcast
Artwork From CP Podcast
Amazing Voices of Teachers Podcast
Links to Win's Books
Twitter
LinkedIn
YouTube
Her Facebook Page
Podcast Facebook Page
United Cerebral Palsy Association
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 45: Combating Racial Discrimination In The Special Needs World
In this episode, we discuss discrimination and adversity against minorities in the special needs world and how to start combating discrimination. Guest Latasha Lewis experienced discrimination and diversity across all areas of maternal care and care for her son, who experienced a pediatric traumatic brain injury. Latasha discusses that children of color tend to have a higher rate of suspension, juvenile justice encounters, and a lack of graduation. This is a biproduct of discrimination and bias. Implicit bias is a bias that shows up in those working with children of color who have special needs. Implicit or unconscious bias comes from the messages one receives growing up about minorities, to the point where it is hard to discern what is true and what you have been taught. The mind makes assumptions based on the stories one has been told. Students of color therefore receive (negative) differential treatment due to the messages others have received growing up about individuals of color and therefore the student is sent to the office more often or is seen as a trouble maker more frequently. A lot of teachers or providers are unaware of this bias, and so the treatment may not be intentional, but it is there nonetheless.
In school, black males are often seen as more threatening and menacing by white female teachers. Dr. William T. Lewis discusses that “white" is often the standard and as one gets further in color from white, one is seen as having more deficiencies than white students, especially since the teacher has less common life experiences to the student. Teachers may look at the white male’s behavior as being “boys will be boys” and the black male’s behavior as being overly aggressive. This leads to systematic racism.
The IEPs are often focused on disability rather than ability, and therefore, the goals are often below what the child is capable of. Students of color who have disabilities may also be ignored or overdiagnosed. Latasha and William discuss how states receive money based on the severity of the diagnosis of the children are and therefore, sometimes overdiagnose especially in lower-income areas. Black males are often most overdiagnosed, which leads to economic oppression. There is data to show that black males who are in special education have double or triple the chance of ending up in the justice systems.
Moreover, a lot of children get stuck in special education classes when they don’t need one, and end up with a certificate of completion, rather than a diploma, and therefore, can only get jobs that barely provide a liveable wage. Some parents aren’t able to be as involved in their student’s education because they need to work very long hours at work to provide necessities for their family, which needs to come first. Other parents may be involved but they trust the educational system and when they go to the meetings and trust they have the best interests of your child, when that may not be the case. On the other hand, there may be a power differential, where the parents are intimidated by the IEP process and education system, so they may not engage or be an advocate, because they do not see themselves in a position of power. To start changing the education system, teachers have to be better and differently educated. And remember, you always have the right to have someone else attend your IEP meeting or have someone else go in your place.
Both guests have concerns over the safety of their sons, even from the police, as the children may frighten if the police approach, due to sensory issues. This may be taken by the police as evading the police, not complying, or becoming combative, and may lead to the children being harmed or killed.
To work toward change, the first step is self-awareness. The second step is having a conversation about how this issue affects yourself and others. Next, we have to work toward intentional action (advocating change in policy, training).
Links:
Dr. William T. Lewis: Beyond Color Blind
Email us if you have any questions or ideas!
Check out updates on our website.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 44: Managing Overwhelm In Parenthood With Guest Laura Hernandez
In this episode, we discuss managing overwhelm in parenthood and putting systems in place to make special needs parenting more manageable. Guest Laura Hernandez has 10 children who live at home, and she homeschools many of her children. Three of her children have special needs. She needed to put systems in place for herself and her family, in order to make life so much more manageable. After helping some friends do the same, she chose to create her own home management company, Mama Systems. A home management coach sees where the stress points are in a parent's life and comes up with ways to manage those things. She finds aspects of their lives to delegate and finds ways spouses and children can help. She also helps parents find time for themselves and time to engage in self-care.
Paperwork is very overwhelming and is never-ending in the special needs world. For health, education, and everything specific to that child, Laura recommends that everything should be kept in one binder. Keeping paper copies is helpful, even if you can access the records online. In this binder, there should be sections for health, school, and evaluations. There should be a separate binder for therapies and evaluations completed through therapy. The binder should be split up into each service. It can be helpful to also have a section for pre-filled out time sheets. This last part saves a ton of time and chaos.
Getting prescription medications delivered and automatically refilled saves Laura a ton of time. Hiring someone or using a grandparent if possible, to take the children to therapies can save gobs of time.
Navigating paperwork related to grants is crazy making. Making a google spreadsheet about all the grants is helpful. Make columns for the date you applied, when you got the grant, and when you can apply again. Keep a copy of the actual paperwork. Highlight it in red if you are completely denied for the grant. You should keep a separate binder just for grants.
Laura became overwhelmed by the quantity of paperwork related to IEPs. Her special education teach said that it is only important to keep FIEs, the IEP only for that year, and any updates during the year.
Regarding home life and mentally managing life, first, sit down and take note of what you want and what you don't want. Make a plan for your ideal day and week, what you would want to happen, and who you would want to make each item happen. Then, see how much you can make happen. Batching work-days is also helpful (like wednesday laundry day). When you have young children, you can make life smoother by using lots of charts and structure, to give them expectations. Set consequences if the rules are not followed, and make sure you follow through each time.
To better delegate, make a list of everything you are doing during the day and everything you want to be doing during the day, pay attention to your daily experiences, figure out what brings you life and what doesn't, and delegate the things that anger you. Give yourself permission to take care of yourself. Think about what you would like to do and prioritize to make it happen. See which things are nonnegotiable, and what you can move around so that you have more time to yourself.
Links:
Website
Instagram
Youtube
Facebook
Email us if you have any questions or ideas!
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Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 43: Managing Sensory Processing Disorder With Guest Erin Grujic
In this episode, we discuss sensory processing disorder and how occupational therapy can assist. Sensory processing disorder looks like different things in different people. Everyone, neurotypical or not, has different sensory preferences and it is important to make sure those sensory needs are met. This disorder can be difficult to get diagnosed since it is not in the DSM-5. However, occupational therapists can assess the child's sensory needs and aversions and how their sensory processing impacts a child's daily functioning.
Regarding touch, when children have lots of touch needs, the child may not be able to their hands to themselves and they like to touch everything. They like to be messy and they are seeking more input. When a child is touch avoidant, they don't like having their body washed or their hair cut. In some kids, their brain doesn't make sense of touch, and so they don't know how much pressure to use when writing or how strong or light they are being. A child who is visual averse might be overwhelmed by bright lights and rooms. Additionally, when there is a lot of information on the page, sometimes the words can jumble and things might not make sense to the child.
For auditory aversion, sounds can be too loud and the child may need to use headphones. If they aren't processing the auditory information properly, parents can make eye contact or tap the child on the shoulder to make sure that the child is attending. For vestibular dysfunction or aversion, there is too much input into your vestibular and visual system. Some children get car sick, are scared of heights, or have a fear of their feet leaving the ground. On the other side, children may not be able to sit still or they might love to spin. They tend to want to move and climb and jump and need more input.
In a sensory diet, it is important to give the child the big input they need, like running, climbing, jumping, and crawling through tunnels. Vestibular, proprioceptive and tactile input are the three most important things to include in the sensory diet, because children get the most out of them more quickly. Proprioception is heavy work which gives information to the joints, but it can ramp up or calm down the nervous system, depending on what the body needs at that moment. Trampolines, exercise, and lifting are really good. However, it depends on the child and what he or she needs at that moment.
To implement this, find a therapist that has the right training. They will try different activities in session and see what works for the child and then will teach the parents and teachers how to implement this. They will teach parents to notice when a child needs more or less sensory input.
Links for Erin:
Instagram
Facebook
Website
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Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 42: Coping With Pediatric Traumatic Brain Injury With Guest Latasha Lewis
In this episode, we discuss coping with pediatric traumatic brain injury as well as dealing with adversity in the medical community against minorities. Latasha Lewis has 2 children with special needs, one with autism, and one with a pediatric traumatic brain injury. Latasha gave birth to her son Cam 3 weeks early. However, due to her race, she was not provided with adequate medical care during labor and delivery. Doctors didn’t listen to her when she was concerned about having a vaginal birth with a 10 pound baby or when she asked for pain medication during labor. As a result, her son was born with a traumatic brain injury, although this was not diagnosed until years later. When her son was born, he immediately was taken to the NICU. Latasha was told the that doctor saw her son, but she was not allowed to be in the room when the doctor evaluated her son and she was never allowed to speak with the doctor about the results.
Although Latasha noticed differences in her son early on, it was challenging for her to get her son a diagnosis. Latasha first noticed something was different around 18 months old. Later, once he was in a classroom, he wasn’t able to do things the same as his same aged peers. But although he had a speech impediment, he couldn’t get treatment because no one had been able to provide with a diagnosis. They weren’t able to obtain a diagnosis for him until Cam was 9 years old.
Cam has been in several types of schools. Latasha was able to obtain special education services for him until age 7 and he had an IEP in the public school and charter school. However, once he turned 7, he was required to obtain a formal diagnosis in order to receive special education. Once his physical school closed, he did an interesting homeschool program, where he worked in his own business most of the time, and other times, he participated in a homeschooling co-op. He had tried numerous types of schooling, but none was a perfect fit. Latasha was excited about his coffee company because Cam learned how to take care of himself, so that if he does not go on to college, he will be able to do any job in business and be able to successfully take care of himself in the world. He now attends a charter school part time and works in the shop part time, but he now has a new IEP. Due to her background in education, Latasha was able to fight the school system and obtain the needed resources for her son. When there were IEP meetings, Latasha attended with a red pen to let the team know what she didn’t agree with and fixed the goals to make an appropriate IEP for her son.
In order to be a good parent to Cam, she had to really learn about her child and adapt her parenting style to what he needed to be successful. She had to learn that each child is different and different strategies work for different children. One has to be a different parent to each child.
Latasha recommends creating a system. When a child is crying or acting out, 1) identify the problem with them 2) talk through the solution 3) talk about what outcomes you/they want to see. Doing these steps the same way over and over creates a new way of thinking and a solution.
Latasha made sure that Cam’s life was a safe place for him, which helped the family to solve any problems or challenges brought up. Latasha created a support system and help for him before he was diagnosed, because she felt that help wasn’t going to come. Therefore, once the diagnosis came, she had already put in place everything he needed. However, a diagnosis did give him access to different services, but it didn’t change anything they were doing at home. They put systems in place to treat the symptoms, rather than the diagnosis. When he was upset, Latasha allowed Cam to experience his experience when he was angry, with some slight parameters. As he began to adapt, the parameters became slightly stricter, allowing him to appropriately cope with anger, without “telling him” how he had to cope. She didn’t want to tell him how he “had to be mad.” She created an appropriate box for him to express his emotions in, and as he aged and learned more strategies, then the box got smaller. Latasha has coped with having 2 special needs children by having a very strong social support network.
Latasha discusses that the parent is the gatekeeper for their child and nothing gets to their child without it getting past the parent first. More of her words of wisdom: You can’t afford to be the kind of parent that you want to be. You need to be the kind of parent your kid needs. Throw out any preconceived notions you had of parenthood. Only take the parenting advice that applies to your kid. Only change a few things at a time. You can’t do it all at one time. Focus on one issue or behavior at a time. Failure is just as important as success. Letting go of the things that aren’t important is a must.
Links:
To Medicate Or Not To Medicate?
Email us if you have any questions or ideas!
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Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 41: Benefits of Inclusion in The Community With Guest Genia Stephen
In this episode, we discuss what it was like growing up in a with a great community that had a positive vision for people with disabilities and their families and how that helped our guest when her son was born with significant disabilities. Guest Genia Stephen's younger sister was born with a disability, so Genia was exposed to differences at a young age. Her mom, although never exposed to individuals with disabilities in the past, was a huge advocate and supporter of her daughter. Her mother took to the yellow pages to search for treatments for her daughter, and was very lucky that those who she chose were on the cutting edge of their professions and worked hard to make sure that inclusion was a huge focus for children. Genia's mom and the leaders at her daughter's preschool were working very hard to increase inclusion in schools.
Later in life, Genia gave birth to a son who has an intellectual disability. Due to her prior experiences and her health care background, she found that she was more prepared to raise her son with disabilities than she otherwise would have been. She found it was helpful to already have connections with people who understood disabilities and were supportive. She found that in close to 40 years, very little has changed in the disability world. She met numerous people who hadn't ever had a positive experience with someone with a disability. Having grown up with her sister, she knew ways to maximize the good life for her son, such as inclusion in school and in the community. She knew from the beginning that her son would be in an inclusive classroom in school. She was very preemptive about schooling for her son and interviewed schools to make sure they would be inclusive. She made sure that when he was very young, her son went to school as often as he could (although it was for a minimal about of time), which prepared him for when he started Kindergarten. Another plus was that his classmates and teachers already knew him.
Genia noted that there is lots of evidence that the self-contained classrooms do not work and may be negative experiences for the children. Being in a self-contained classroom may also reduce your child's chance of being hired for a job after high school. Role-modeling in inclusive classrooms, however, has been shown to be very effective. She made sure her son engaged in the community and is on several community sports teams. She made sure she found out what her son's interests were, what the social roles were for children of that age, and found where those activities were happening that her son wanted to engage in. She made sure that he was included in these activities, but also that the accommodations were reasonable, so he was able to maximally participate without minimizing the activity to him or others.
Her website came about because she wanted to meet parents where they were early in their journey and to provide them the opportunity to be introduced to a disability-inclusive community and have the opportunities for thinking and learning that she had growing up, since not every community has in-person opportunities to learn. She offers paid courses and memberships to help with the "how-to" over time and offers free monthly expert presentations by world thought-leaders.
Links:
Website
Facebook Group
Podcast
Instagram
Theory of Social Role Valorization
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 40: Having a Healthy High-Risk Pregnancy and Coping With Birth Trauma With Guest Parijat Deshpande
In this episode, we discuss experiencing trauma when parenting a child with ongoing medical complications. Guest Parijat Deshpande's parenting journey began with an ectopic pregnancy rupture, IVF and prolonged bedrest. She eventually got pregnant with her first child, experienced PPROM and went into labor very early, and delivered at 24 weeks after having been in the hospital for 15 days to ensure that she remained pregnant as long as possible. Shortly before she went into active labor, she looked up what a 24-weeker looked like, which she felt made a humongous difference for her when her son was born, because how he looked didn't surprise her. Her son had a 109 day NICU stay and then due to his fragile medical conditions, he was on at-home lockdown for 2 years. The NICU stay was a huge shock for her; the noises, the sounds, the machines, the nurses who didn't know anything about her. Toward the end of her son's NICU stay, he had to switch hospitals due to possibly needing a surgery that the initial hospital wouldn't be able to provide. Then, they were at a new hospital, with new routines, new people, and no familiarity, which was really difficulty for Parijat. She was thrilled on the day of discharge, as they were finally free! However, she still needed to navigate preemie parenthood and just parenthood in general. They had countless doctor and specialist appointments and a huge team of people still following him. Therefore, life was a lot busier after discharge. There were also a lot of identity shifts, such as discovering who her son was now that he was home and who she was as a first time parent. Additionally, as a parent of special needs, Parijat found herself wearing zillions of different hats (mother, therapist...).
During the 15 days between being in the hospital and delivering her son, she realized that whenever her anxiety rose, her contractions picked up and every time she calmed her body down, her contraction would stop. She didn't want her child to be born due to anxiety; she wanted him to be born when it was time for him to be born. Therefore, she delegated things to others and focused herself on keeping her body as tension free as possible. Later, when she looked into it, she found 70 years of research on nervous system regulation and pregnancy outcomes. This led her to want to become a high risk pregnancy specialist and trauma professional.
High risk pregnancy specialists (not MFM's) provide mind-body support in relation to nervous system regulation. They can help before, during, and after pregnancy, to retain a resilient healthy nervous system, which can help keep the rest of the body health and safe. Pregnancy, labor, and delivery have the potential to lead to and cause the experience of trauma, due to perceiveing yourself or your child might be in danger, and then we can get stuck in survival mode. When you have a preemie, this can lead to the perception of danger, which can lead to the experience of trauma for the parents. Then there are triggers in our lives that continue to make us feel unsafe. Having a child with ongoing medical conditions can also lead the parent to experience feelings of trauma. This is because everything starts to pile on top of each other, and there are lots of unknowns and things that cannot be predicted. Uncertainty can lead us to feel like we are experiencing danger.
Symptoms of trauma can include flashbacks and nightmares, but also possibly things like crying out of nowhere and feeling all of a sudden overwhelmed, having a hard time settling into being happy, and getting really angry out of nowhere. Sometimes this can present as a sudden chronic illness. Parijat discussed "conventional wisdom" that doesn't work. Parijat noted that it is important to retrain the nervous system to return to baseline. She noted that types of professionals that could be helpful are "trauma trained," including but not limited to: psychologists, yoga instructors, pilates instructors, somatic experiencing practitioners, and EMDR therapists. The "right" type of person differs with each individual. To find which might be right for you, educate yourself and look into these different practices and see what makes the most sense to you. Mindfulness can also be really helpful to allow your body to adjust to being still. An easy way to start doing that is to start by noticing the basics, like thirst and hunger.
Links:
Website
Pregnancy Brain
Healing Hearts
Facebook
Instagram
Delivering Miracles Podcast
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 39: Writing Your Special Needs Journey With Guest Anne Fricke
In this episode, we discuss how writing can help parents in the journey of raising children with special needs. Writing and storytelling has long been a helpful part of life for guest Anne Fricke. She started doing a lot more writing, through her blog, shortly after her daughter, Freya, was born with Prader Willie Syndrome. After making a different podcast, her blog led into her creating a special needs parenting podcast called Walking With Freya. Four to five years ago, Anne started reading her poetry out loud to an audience, which was really meaningful and touching to the audience. Shortly after, she started her podcast, which has been inspiring and informative to others in her community. Writing can be a helpful coping process and a way to help guide your special needs journey. Anne also started Storyteller night in her town, which has been very powerful for her and those in attendance. Writing became so beneficial for her, that she chose to create a journal for other special needs parents, where she provide prompts and breaks it down into different aspects of the special needs journey. As she was creating the journal, she found that when she was writing, major aspects of her journey started to pop up that she found she needed to process. She found that this often became the case during her writing, which was very powerful to her.
In the special needs journey, writing can help us clear our heads and figure out where to begin. Writing can also be a release or can clarify the experiences that we had. It can also remind us of things that we used to do that worked, but that we may have forgotten about. Writing also helps keep our thoughts in order. Writing regularly makes the whole process easier. If you don't know what you need to write about, start writing about your day or pick a sentence and keep rewriting it until something else comes out. Using quote can be really inspiring. Anne also joined a writing group, which has been inspiring to her. She learned through this process that sharing your story is important. She also recommends reaching out to your local community to find and gain support and connect with others.
Links:
Podcast: Walking With Freya
Website
There Is Joy To Be Found Here; a writing journal for parents of children with special needs
Instagram
Good Reads
Nonviolent Communications
Move Play Thrive
A Mother's Rest
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 38: Medical Moms of NICU With Guest Tanisha Burke-Wormley
In this episode, we discuss NICU stays, navigating complex medical systems, and NICU PSTD. Tanisha Burke-Wormley had a very long and complex experience with the NICU system. At 20 weeks pregnant, she found out that her son had urinary tract blockages and chronic kidney disease, and she had minimal amniotic fluid. She was told that if her son survived (which they weren't sure that he would), he would need a long NICU stay. They traveled to Ohio to get prenatal care for her son. They did fetal care intervention, meaning they placed artificial amniotic fluid inside her. She also needed fetal care surgery to get a shunt in her son's kidney to drain his kidney and alleviate the pressure. She also needed steroid shots twice. Before her son was born, she needed to be in the hospital for several months. Her son was born at almost 37 weeks. Once he was born, he was taken immediately to the NICU because he needed respiratory intervention and treatment for his lungs and kidneys. The NICU stay was very overwhelming for Tanisha and her husband. She felt she was missing out on the baby milestones and experiences and felt that the NICU nurses were being more of a mom to her son than she was.
Being at the Ronald McDonald house helped her feel a sense of community and feel that she wasn't alone. The Ronald McDonald house provided games, videos, board games, live entertainment, meals, tickets for activities around the area, and gifts, as well as a place to stay. Tanisha stayed with her son in the NICU over the holidays and Ronald McDonald house had Christmas trees, Santa, and Christmas carols. They also provide toys and activities for the children who are staying there. Child Life also helped her to cope. They provided activities to help celebrate the child's NICU milestones, posted pictures of her child, personalized his space, provided toys, provided music therapy, helped Tanisha find ways to bond with her child, made collages of her child from his stay, craft days for parents to get together and make crafts for their children. Social media helped her slightly to cope, but was a bit overwhelming, as some people were providing too much sad news. She was also able to talk to her husband and really bond with him. Care conferences with all of his specialty doctors were also very helpful, since her doctors were captive and she could get all the information she needed from them all at one time. Her son required 10 surgeries prior to returning home. Tanisha felt that she experienced what she terms "NICU PTSD" from seeing her son so sick and having had so many surgeries, and experieincing trauma during his NICU stay. He was sent home from the NICU twice and was rushed right back to the ER for severe medical problems. She started being better able to cope with the PTSD once her son was getting healthier and was home for a full year. To help her coach, she used the NICU pictures and wrote down her emotions from the time when she was in the NICU. Networking on social media helped, as did attending the NICU birthday party and seeing the other moms with whom she traveled her NICU journey.
To manage the complex medical community, it was helpful for her to use the binder from Kangaroo Kids Pouch CLT to navigate all of the information she had. Tubie Friends was also helpful, because she was provided a build-a-bear type stuffed animal which had the same tubes as the children have. Card For Kids was also helpful to uplift her and her son. She decided to do home dialysis, which would be easier on her son's body and minimize additional appointments outside of the home. Having time to speak with the NICU residents was helpful, as they were great resources. Her home health nurse helps to cut down on extra appointments, as they can do labs and bloodwork in their home. She found the right doctors by watching the doctors in the NICU to see which doctors she liked the most. Jaleel, her son, was also able to obtain some in-home therapies. She recommends that if you have a long commute to the different doctors, to be open about that and ask if they can have multiple appointments on the same day. Working with a social worker to find financial resources and networking with other moms can be really helpful to help manage complex medical conditions.
Links:
Tanisha Burke-Wormley Facebook Page
Medical Moms of NICU Facebook Group
Instagram
Linked In
Ronald McDonald House
Child Life
Tubie Friends
Child Life On Call
Kangaroo Kids
Kangaroo Kids Pouch CLT
Cards For Kids
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 37: Having Autism Spectrum Disorder in The Entertainment Industry With Guest Trey Olds
In this episode, we discuss being in the entertainment industry while also having autism spectrum disorder. Guest Trey Olds has ASD, is 19-years-old, and broke into the industry at age 13. He has had his own radio show, and also has been a DJ, writer, and actor. Trey broke into the entertainment industry at the recommendation of friends, who thought he would make a voice actor. He has progressed through different parts of the industry. Trey discusses further how he got into each area of the entertainment industry. Practicing and hard work help Trey to get more comfortable in the industry and to improve his performance and writing. He mentioned that there are ups and downs in every area of the business, so persistence is key. Having ASD was initially a challenge for him in the industry as some agents wouldn't speak to him due to him having the disorder. He was also very shy. However, he adapted and practiced to help him get through being so shy. He also found that going out and meeting new people helped him to network and find new opportunities. Sometimes, he was able to use ASD to his advantage, as occasionally it got him more interviews on his radio shows. Some acting roles came his way specifically because he had autism. He found that staying positive helped him progress through this industry. He also found that he could learn from failure. He recommends that folks be persistent, but nice and not pushy or rude. Having a thick skin can also help. Make sure to have a backup plan or a regular job to keep a steady income. And always be respectful and nice to your fans.
Links:
Trey's YouTube Channel
Facebook
Actors of The Past
Trey Olds Radio Show
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 36: Self-Care For Parents and Advocating For Your Special Needs Teen With Guest Britney Dent
In this episode, we discuss self-care for parents and advocating for you special needs teen. Guest Britney Dent started off as a social worker and teacher. When she started staying home to take care of her children, she chose to start a coaching business for teens and their parents. Self-care is so important to parents. If we don't take good care of ourselves, we won't feel well and it will impact how we are able to take care of our children. Self-care often falls by the wayside due to lack of time, guilt over taking time for ourselves, having other priorities, and traditions. Some ways to do self-care include exercise, listening to music, or taking a nap. Britney started the 260 movement, meaning finding the time to enjoy with your children and also to take care of yourself on Saturdays, the day we are most likely with our children. To find the time, you have to look and see what needs to happen and what can wait in order to try to take care of ourselves. It is important to prioritize the time to do self-care. To minimize feeling guilty about taking time for yourself, you have to change your mindset. If you don't have the money for self-care, free events are awesome! Facebook can be a great resource to find free events. You can also go to the dollar store and get crafts to do for fun. Sometimes, you have to get creative in order to find ways to do self-care. If you don't have the energy for self-care, make sure you are intentional about what you do. Drinking water, taking naps, taking coffee naps, listening to music, mindfulness, meditation, the miracle morning savers routine, yoga, zumba, finding things on YouTube, meditation apps, and coloring apps are some relatively easy ways to get more energy during your day. Sometimes in order to get self-care in, we need to ask for help. College students can be great to help you find more time, by watching your kids.
Regarding advocating for your teen, you should start as soon as possible. The earlier you learn about your child's condition and the more you learn, the better off you will be. The starting place for each parent is different, but it is recommended to read as much as you can about what you are dealing with. There can be local talks and events to meet others and learn additional information. We most often have to advocate for their health and their education. It can be helpful to look into your local laws and regulations to make sure you have all the information you need. Self-advocacy for teens can look like feeling confident that they can handle situations, an understanding of what they want, attending their own IEP meetings, including them in decisions, and preparing them ahead of time to advocate for something. Advocates and coaches can also help the teen self-advocate. A guidance counselor and/or social worker can be excellent resources, but a job coach can also be useful.
Links:
Britney Dent
Website
Facebook
Instagram
Email
Miracle Morning Savers
Yoga With Adriene
Smart Kids With LD
Bullet Journals
Bullet Journals
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 35: Beating All The Odds With Guest Linda Smith
In this episode, we discuss guest Linda Smith's story of raising her son, Christopher. At an early age, Linda overcame her childhood abuse. As an adult, she experienced homelessness but also fame with being a dancer, actress, and model. She and her husband were living in Las Vegas during her pregnancy, but at 8 months pregnant, she chose to fly back to Canada. However, she went into labor on the airplane. She landed in Canada and had her baby 3 hours later. Her son, Christopher was born with Downs Syndrome. This meant that he was not allowed citizenship or even entrance in the USA due to his diagnosis. Linda had to fight for 18 years to allow him entrance into and citizenship in the USA. Linda further shares her and her son's incredible story. There were times, in addition to immigration issues, that were very difficult. People often misunderstood the disorder, had lots of misconceptions, or turned away from him. At the time he was born, there was no education available to him and there were no jobs for him. Linda created her foundation Christopher Smith Foundation to help caregivers and to thank them for all of their hard work. Linda wrote Unwanted about her journey raising Christopher. Those proceeds go to the Christopher Smith Foundation.
Links:
Linda's Website
Email
Christopher Smith Foundation
Downs Syndrome Organizations
Autism Society
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 34: Financial Planning for Special Needs Children with Guest Zaccary Call
In this episode, we discuss financial planning for children with special needs. Our guest, Zaccary Call, explained that there are many different facets to Social Security. Social security/retirement income is what we think of retirement benefits and starts at age 62 (or later if you choose). Supplemental security income (SSI) and Social Security Disability (SSDI) both have disability requirements when it comes to children.
SSI is a benefit paid based on need, whereas SSDI is based on the child's earnings (if they have worked for at least 10 years) or their parent's earnings. To qualify for and keep SSI, you cannot have more than $2000 in assets, excluding your home and your car. Under SSI, you can earn only $19,000 a year, although they don't count all of the income, as they have some allowable deductions, such as for sustaining life (like housing and food). SSI is funded by general tax revenues. The Federal Benefit Rate (FBR) is $771 for one individual and $1157 for a qualified couple, as of 2019. SSDI is based on someone who is insured, meaning they have been in the workforce for at least 10 years (or 10 years worth of quarters) to qualify for SSI benefits. There is a family maximum of 150-200% of the parent's SSI.
SSDI is not paid due to low income, but it is paid because the child has worked or their parents have worked. Of note, SSDI is often denied the first time, but you are allowed to appeal or reapply. Most children who qualify for SSDI are adults when they become eligible for SSDI. Another, and unfortunate, way to qualify is if a parent passes away, as you can use the SSI death benefit. To qualify for a disability under SSDI, you need to show the child can't do any typical job. They look at current work status of the child, how much money the child and parents are earning, how severe the medical condition of the child is (lasting at least 12 months or expecting to result in death), can the child do the job he/she was doing, and can the child do any job at all. However, if the child is blind, they automatically qualify for SSDI. A state disability agency makes the determination of disability. If this information is confusing, there is a child disability starter kit which can help you figure out where to start.
Social security planning can be very important, as there are a lot of benefits within social security and there is a lot to navigate. There can be a lot of swapping with SSI, so it can be helpful to meet with a financial planner to discuss eventualities and the best option for your SSI. Do not contact SSA for help, as they tend not to give accurate answers. Attorneys can help with this process, but they tend to cost money. Financial planners can be very helpful, however, and less expensive.
Retirement and income planning can be very complex when you have a child who has special needs and is likely to outlive you. Special needs attorneys can help. Special needs trusts may also be helpful. A trust is a document that lays out a set of instructions that are to be carried out. A person with a disability can receive money from with without it hurting their ability to obtain SSI. These are irrevocable gifts from a legal perspective and this should be the amount you feel that family member needs. You can set up a secial needs trust for anyone who is disabled, and rules are not as strict as an ABLE account or SSI/SSDI. The purpose of this is to make sure you can provide additional money to the child without jeopardizing their SSI. To create a special needs trust, you would need to work with an attorney to help you draft the documents. This typically costs $1500-2500. Make sure that attorney is very familiar with special needs trusts.
An ABLE account is easier to set up and less expensive to set up. It is a tax-advantaged account. It is similar to a 529 plan, but for the needs of children with special needs. A family can put money into this account and have the money invested and take it out and spend it on things that the disabled person needs, such as food, medical expenses, and living expenses. For these accounts, you take the money out and use whenever you need it. It can also help avoid losing SSI, while also providing additional money to the child. Max contribution is $15,000 per year. The max lifetime contribution is around $300,000. The first $100,000 (at a time) is exempt from impacting eligibility for SSI. If there is money left after the person passes away, Medicaid can recoup some money, but the rest will go to a beneficiary that was previously designated. To be eligible for ABLE accounts, you must meet criteria for a disability, with similar criteria as SSDI. To set up an ABLE account, find the state that you would like to set up your ABLE account with and follow their instructions.
Links:
Financial Planning Firm
Podcast/Blog
Twitter
Instagram
Facebook: Zaccary Call
Linkedin: Zaccary S Call
SSA disability page
Brochure about Disability
How do you qualify?
Child disability starter kit.
Able accounts
https://www.able-now.com/
Special Needs Trust
Investopedia
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 33: Planning for Transition To Adulthood With Autism With Guest Dr. Matt Segall
In this episode, we discuss preparing for the transition to adulthood in teenagers with autism. Dr. Matt Segall discussed that it is important to realize that autism is not a disorder of childhood. He noted that although some teenagers may appear that they have outgrown autism, this is a not a disorder that people can grow out of. Usually, these individuals have learned ways to compensate for the difficulties they have, but work so hard to compensate, that they are exhausted by the end of the day. Even if they appear to function well, developmentally, they may actually be younger than their neurotypical peers.
It is important to plan for transition as there is a lot to plan for. It is important to determine what how to manage inclusion after high school. It gives us a framework for identifying where we see the student after graduation and entering the community, and to identify what skills are missing and take advantage of the years they have to maximize the years. A transition assessment can aide this process. A transition assessment should be focused on identifying where this individual going to live, what are they going to do vocationally, and what do they need to be part of a community. The answers to these should lead to goals to populate into the IEP.
Parents should ideally begin thinking about thinking about transition in 8th or 9th grade. This helps to determine they type of degree they will graduate with, the type of testing they will have. However, the school system doesn't often begin planning for the transition until the last year of high school.
There are numerous factors for parents to consider during this transition process, including your child's social skills, their adaptive behaviors, how they are as a part of the community, psychological status, safety, work, finances, health, independent living, self-awareness, self-advocacy, self-determination, continued or higher education, executive functioning, continuity of service, finding their passion and engaging in that passion, maintaining health insurance, the teen understanding their healthcare needs, and understanding community and social rules.
It is important when creating an IEP that functional aspects are just as important to include as academic skills. However, those aspects can be difficult to put into practice in the schools. The children need to be taught the social skills, practice them, and learn from mistakes. Dr. Segall noted that it is important to plan for the transition to make the most of high school, to teach skills, obtain feedback, to determine where we expect the child to end up after high school. This doesn't mean college vs no college. Some teens who are college capable do not have the desire to go to college. We need to be ok with this and assist them in finding the right path for them and create opportunities for them. We want to make sure we are taking into account what the teens want. There are multiple avenues for additional education if the child desires, such as technical schools, dual enrollment in high school, or an Associate's Degree. There are also nondegreed programs on college campuses where the teen could learn academics, social skills, life skills, and vocational skills. Inclusive education is incredibly important to both teens with autism and other teens.
Even if students are capable of managing the academic component of higher education, it is important that the teen is also capable of regulating and managing their day, planing their day, achieve their goals, be goal directed, and manage their own emotions. If the child doesn't have that ability, then these should be IEP goals so that they have a successful start to college.
Self-advocacy is a major factor. There are 4 critical skills everyone needs, the first being social skills. Self-awareness skills are very important and are the precursor to self-determination and self-advocacy skills. These skills must be taught in order to develop self-determination and self-advocacy skills. These teens need to be able to know and communicate strengths and interests, know their challenges, know how they see the world differently as a result of being on the spectrum, how the world sees them differently, and what works for them. Self-determination encompasses setting a goal, making a plan to achieve the goal, and having the intention to implement the plan to achieve that goal. Self-advocacy encompasses the ability to communicate about what you need, what you want, and what you would prefer to do.
To assist in preparing the teen for the transition, the IEP goals need to be their own and goals that they want to work on. In order to do this, the teen has to know their diagnosis, even this is uncomfortable for the parent or teachers. This can also help to determine eligibility for the program the teen wants to get into and working on that. It is then important to start working on these goals one by one. We have to realize that it can be overwhelming for them. However, transition will happen no matter what, so making sure everyone is prepared will set the teen up success. Having a support system for both you and your child can help significantly. Independent living skills tend to decline in those who are higher functioning, whereas those who have moderate functioning tend to improve in those skills, because people continue to work with them. Teens can experience anxiety or depressive symptoms around this time, and they may not have the coping skills or communication skills to use a strategy or reach out for help. Poor outcomes in school and work are devastating to them, but are avoidable with good planning. Therefore, the goals should always be about creating or maintaining opportunities for the student.
Parents can cope with this transition by engaging more heavily in the planning process. Toolkits on Autism Speaks about everything related to coping, transitions, and even diagnosis. Connecting with other families helps to not feel isolated during this process. It is important to set up small successes and reinforcing how well the child did with that task. It is important to focus on the positives in the situations, as best we can.
Links:
Think College
Self-Determined Learning Model of Instruction
Transition Tool Kit
Waisman Center
OCALI
VCU Autism Center For Excellence
Vocational Rehabilitation
Emory Autism Center Education and Transition Services
Organization For Autism Research
OAR Finding Your Way: A College Guide For Students On The Spectrum
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 32: Successfully Homeschooling Children With Special Needs With Guest Cindy La Joy
In this episode, we discuss homeschooling children with special needs, working as a team with your children, and grieving the loss of normal. Guest Cindy La Joy has homeschooled her 5 children for the past 11 years. Cindy adopted her children and when her children came home, they either didn't speak English, or had had minimal schooling, so she had to start back from preschool to educate her children. All her her children had different needs. However, she had to figure out the diagnoses for each of the children, as no one else was assisting her with the diagnosis process. Cindy also had to teach her children English.
Cindy tried various homeschool programs, but no particular program was a good fit for any of the children. Therefore, she tried different programs and used the pieces that worked for each individual child. The did a lot of in person trips/field trips and excursions for hands-on learning. They chose to homeschool year round, and if it was too much, they would take brief breaks and then return to school. They did a lot of activities that taught them real-life skills. Her children adjusted to homeschooling relatively well, as it was a good fit for them, less overwhelming, and more tailored to their needs than public school. Cindy had to educate herself on various special needs, teaching, as well as educating children with special needs.
Their family considers themselves a team, and calls themselves Team La Joy. Her family chose to see disabilities as the outside common enemy, which was something they could work on together. She loves the relationships among her family, as her family works really well together and the kids have never fought with one another. They have a saying "hard isn't bad, it is just hard." This makes anything much easier to cope with. They always put relationships first before challenges.
At first, Cindy felt very isolated, but she worked hard on finding social supports and other homeschooling parents. She had a small social support network and didn't feel like anyone understood or could really help her. However, Cindy noted that although she had a lot on her plate, things piled up gradually, so her "coping muscle" strengthened and she was able to find ways to cope better as time went on.
As time went on, she started to grieve the loss of normal. She grieved not being able to rock her baby and not having the early years with her children. She grieved the fact that her children still need assistance in adulthood and that she and her husband can never go away together. Her life is very different than what she expected it would be, but she loves her life the way it is.
Links:
Email Cindy
Blue Collar Homeschool Group
Blue Collar Homeschool Facebook Group
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Coronavirus Update: Part 2
This episode is chock full of recommendations for if your child is having trouble sleeping, trouble keeping a schedule, or trouble meeting his/her sensory needs.
Check out these resources:
Episode 31: Hearing Loss And Achieving Your Fullest Potential With Guest Theresa Harp
In this episode, we discuss learning helping your child learn language when they have hearing loss, as well as helping your child to achieve their fullest potential. When guest Theresa Harp was about 10 years old, her brother was born, who was later diagnosed with Down's Syndrome. When he was in elementary school, he began to experience hearing loss. This coincided with Theresa's college years and her coursework in speech therapy and audiology. This helped guide her to her career in speech therapy with children who have hearing loss.
With kids, she works with American Sign Language (ASL) and spoken language, although this depends on what the family wants to focus on. This can change as the child's strengths and needs change. Each family is different; some focus only on ASL, some focus only on spoken language, and some choose to use a blend of both. The goal is to make sure that whatever approach the family chooses, that the family can communicate with the child and that the child can communicate with the family. Sessions typically look like playtime, and family is always included in sessions. Sessions are flexible and dependent on what the needs of the child and family are that week. The approach is different for each family, because each family is at a different phase of grief, and each family has different needs at different points in time.
To reach the child's fullest potential, Theresa asks parents how they envision their child's life 5 and 20 years from now and what their goals might be. Theresa educates the families on what that child's potential could be, and gaining social supports of other parents in the same situation helps as well. Theresa has noticed that social support has been key for these families, including Facebook groups. It is important to know that you can work on language development very very early on, including talking and/or signing to you baby, using language well, and using language often. Speech therapy strategies can be easily implemented into daily life, without having to have tons of timeout of your schedule.
Links:
Theresa Harp
Facebook
Instagram
Signing Time Videos
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 30: Raising Twins In The Special Needs World With Guest Cecily White-Cooper
In this episode, we discuss raising twins, one neurotypical and one with autism. Cecily White-Cooper's son was diagnosed with autism at age 4. However, she noticed around age 18mo that he was having delays, and he received services through early intervention early on. He was able to receive speech therapy, occupational therapy, and psychotherapy. He tried applied behavioral analysis, but the family was not able to do 10-15 hours of therapy per week outside of school, and doing one hour per week was not useful, so they discontinued ABA. She noted that her son continues to do speech therapy. She makes sure her son gets the therapies that he needs, but she also makes sure she and her family don't "eat, live, and breathe autism."
Her son is in the public school system in an autism program. However, both children go to different schools. Cecily noted that she doesn't feel he is getting a stellar education in his current school placement, but that homeschooling is not currently an option. However, she works hard with him at home on his schoolwork to compensate. Her son requires more assistance and routines than his twin sister does. Both twins are helpful around the house, but Cecily has to repeat herself a few times with her son before he helps out.
His twin sister initiates play with Cecily's son, as he tends not to initiate play. She stated that he is not overly social currently, but he doesn't appear upset by that. She and her children can go most places together, but he prefers not to go to malls. She does special trips with each child. She noted that her twins act like typically siblings, being sneaky, and fussing at each other at times. They tend to bond over their shared birthday. Her son doesn't have a lot of public meltdowns. However, he does like to touch the hair of other people. For her self-care routine, she listens to podcasts, watches youtube, meditates, listens to sermons, goes to spas, gets her nails done, and exercises.
Links:
Teacher Ces Podcast
ITunes
Spotify
YouTube
Instagram:
Twitter:
Facebook
Yoga With Adriene
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 29: Mastering IEPs and 504 Plans With Guest Courtney Burnett
In this episode, we discuss IEPs and 504 plans. Courtney Burnett's daughter was diagnosed with Cerebral Palsy at age 4. Courtney began working in advocacy due to seeing parents struggling with the special education systems. She felt the push to help and initially got started through word of mouth, calling people, and emailing people. She completed trainings to become a Master IEP Coach.
In order to have an IEP, a child needs to qualify for one through an evaluation. These are children who have educational goals and require related services, such as occupational therapy, speech therapy, vision therapy, small group interventions, and the like. A 504 plan is created for children who have medical or physical needs who need additional accommodations in order to access their education. A big difference is that 504 plans can follow you to college, whereas IEPs cannot. Courtney recommends considering switching to a 504 plan in your child's senior year of high school, if possible, so the child can continue to obtain accommodations in college without requiring an additional evaluation.
To obtain an IEP or 504, a teacher can reach out to the family and initiate the process of an evaluation, or a parent can reach out to the school (ideally in writing). If the school pushes back, parents can provide a written request to the school for an IEP meeting, which can start the ball rolling to determine if the child needs an IEP or if there are other strategies that the school may want to try first. If you have a young child and are concerned, ask for an evaluation to see if they require an IEP and accommodations. If your child doesn't qualify, keep an eye on the concerns that you have, because your child may meet criteria for services several months down the road.
Before an IEP meeting, it is important to prepare a parent input or vision statement. Having pre-IEP meetings with teachers can also be helpful. Come up with ideas for what you would like in the IEP prior to attending the IEP meeting. Reviewing the prior progress notes can also be helpful prior to the IEP meeting. Also, review their service minutes, so you can compare the prior IEP to the current one. When coming up with IEP plans and goals, it is always important to think about how it will actually be implemented, and how many service minutes vs consultative minutes a therapist would need to work with your child. It is always helpful to bring someone to the IEP meeting who knows the child well, or who is part of their treatment team (such as an outside therapist). However, as a courtesy, let the team know in advance that you are bringing someone. Sometimes, it can be helpful to let teachers know that we don't expect perfection, but that we want to make sure we are all in communication with each other, so we can help and support teach other.
If you are told that something isn't possible that you feel is a reasonable accommodation for your child, always ask if they can point out where that policy is written down. If things aren't moving forward, parents have the right to disagree with the team. If the school still disagrees with the parents, it is time to bring in an advocate or IEP coach. If the IEP team gives you more pushback, you can kindly explain how the accommodation can actually help the school and the other children. Of note, private preschools do not have to follow IEP recommendations. If you do not agree with the school, there are options for due process, and you can always reach out to an advocate or IEP coach who can help you through that process.
She wishes she knew that parents have a voice in the process and that there are different options within the school district with regards to placement. Additional resources include the Arc, Raising Special Kids, and Partners in Leadership. Community networking can also be very helpful.
Links:
Courtney Burnett
Facebook
Instagram
Freebies
Master IEP Coach Program
13 Categories to Obtain an IEP
IEP Coaches
The ARC
Raising Special Kids
Partners in Leadership
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
We are sick, overwhelmed, and losing our minds. No show notes this time ;)
Episode 28: Raising a Special Needs Child Into Adulthood With Guest Harriet Cabelly
In this episode, we discuss raising a child with special needs children into adulthood, and grief over the "loss of a shattered dream." Harriet's daughter, Nava, was born with agenesis of the corpus callosum. When her daughter was diagnosed, Harriet became very upset. She heard a lecture from a doctor who discussed parents going through the grief process when their child is diagnosed with a different need. She found psychotherapy and group therapy very helpful to help her through her grief. When you are pregnant, you expect a "normal and healthy" baby and when that doesn't happen, your dream may feel shattered. She found it helpful to "rebuild her new reality" and to set new dreams and goals within that new reality.
Her daughter is now an adult. However, Harriet had to figure out how to facilitate the transition to adulthood. She first decided to think about what she was parenting toward, meaning what are your ultimate goals for the child and how can you assist the child to be as independent as they can be. To prepare her daughter for the transition, she made sure not to pity or enable her daughter, tolerate it when her daughter struggled, and to assist her daughter with being as independent as she could be. Assisting the child in gaining a sense of self-pride and self-esteem was very important. She highly recommends getting on a wait-list for independent living a few years prior to when you expect your child to be ready to move into independent living. It was also helpful for her to find and work with a special needs attorney or elder lawyer, in order to gain assistance and education regarding supplemental needs trusts and guardianship. Regarding work, she also recommends that the child obtain assistance and services through vocational rehabilitation. It is helpful to think about what your child likes and what his/her strengths are to help him/her find a job that is a good fit. She also found it helpful to have a Medicaid service coordinator that oversees things. If you have other children, it is really important to make sure you have one on one time with those other children as well.
Links:
Harriet Cabelly
Email
Facebook
Twitter
LinkedIn
Living Well Despite Adversity
Special Needs Trust
Vocational Rehabilitation
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 27: Three Secrets Every Special Needs Parent Needs To Know With Guest Melissa Corkum
In this episode, we discuss three secrets every special needs parent needs to know. Melissa Corkum and her husband have 6 children, two of whom have special needs. Over the course of raising her children, she developed an individual and group parent coaching business, providing the knowledge she had learned over the years to others who require assistance. She noticed that her family exhibited blocked care. She sought to figure out how to treat this by utilizing numerous trainings and readings to help release the blocked care. These taught her about high structure and high nurture parenting, which helped her family grow in a positive manner. In order to cope with challenging situations, finding social support and connecting to others in similar situations on social media was very helpful to her. It was also helpful to her to redefine success as a parent to not revolve around her children's maladaptive behaviors. Through her coaching company, she has drop-in group coaching, but she has also created short courses that are manageable and digestible. Other resources she has found helpful are essential oils, having a mindset shift, the safe and sound protocol, EMDR, relaxation and mindfulness apps.
Melissa divulged her three secret every special needs parent needs to know.
Secret 1: It is not your child's fault or your fault that the child "can't act his age." When children are supported appropriately, they do not misbehave. Therefore, it is up to us as parents to figure out what they are.
Secret 2: Bad behavior is your child's way of telling you he/she needs something. There are 5 things to examine that might be leading to the "bad behavior." Do they feel tired, hungry, sick or thirsty? How is this affecting their sensory processing? What are their emotional regulation needs? Are they feeling safe? Do they have the skills needed to do what is asked of them?
Secret 3: You don't have to choose between being the bad guy and being a pushover. You can choose both structure and nurture.
Melissa is offering our listeners free access to her Laugh More, Yell Less Challenge. Check it out!
Links:
Melissa Corkum
Laugh More, Yell Less Challenge
Empowered to Connect
The Connected Child
Trust Based Relational Intervention
Safe and Sound Protocol
Eye Movement Desensitization and Processing (EMDR)
Stop, Breathe, Think
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 26: Advocating For Our Children with Guest Tosha Rollins
In this episode, we discuss advocating for our children and finding and utilizing resources. Tosha Rollins' oldest sons were diagnosed with autism spectrum disorder (ASD) and ADHD when they were in middle school. Her oldest son was initially misdiagnosed with oppositional defiant disorder, due to misinformation on the part of the doctors about ASD. In order to advocate for her sons in school, Tosha had to educate herself about the accommodations that were available to her children in school. She obtained assistance with the IEP process through the South Carolina Autism Society. One of her son's had undiagnosed auditory processing disorder, and school became too overwhelming to him in high school. Therefore, Tosha allowed him to do homeschooling, and her son excelled in school. Vocational rehabilitation also helped her sons both in school and out of schools to work on vocational goals and transition into adulthood. She and her children also worked with South Carolina's Department of Disabilities and Special Needs (DDSN). She used the community waiver, which allowed her in-home respite care. These providers take her children to doctor's appointments, counseling, shopping, equestrian sessions, spend time with her sons in the community, and assist with social skills. The DDSN also provided her family with a case manager. Currently, she struggles to find independent living options for her children, as options are few and far between and resources are incredibly limited. In order to be successful in advocating for her children, she had to make sure she engaged in self-care and made herself a priority. She found it crucial to ask for help when she needs it. She initially had difficulty finding resources, and wouldn't have found any had it not been for her son's guidance counselor.
Links:
Tosha Rollins, LPCA
Facebook
Instagram
Autism In Action Podcast
South Carolina Autism Society
Vocational Rehabilitation
Department of Disabilities and Special Needs
Community Waiver
Gratitude App
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 25: Growing up With Different Abilities with Erin Magennis
In this episode, we discuss what it was like growing up with multiple disabilities as a teenager. When she was 14, Erin Magennis began to experience a sudden change in her health and was eventually diagnosed with several different medical conditions, including EDS (Ehlers Danlos Syndrome), POTS (Postural Orthostatic Tachycardia Syndrome), and sensory processing disorder. It was difficult for doctors to diagnose the different conditions. Additionally, she had to find doctors who understood the conditions and navigate the medical system as a teenager. The transition in care from childhood to adulthood was also very difficult, since the doctors did not know her history, did not have access to all of her medical records, and the disorders are relatively rare, so there was little research about treatment of the conditions.
Growing up with EDS, her joints would roll a lot, and her joints were shaped unusually. In order to cope, she had to be very attuned to her body so she wouldn't get hurt. Due to her conditions, she was only able to stay in school for 1-2 hours per day, much of that being spent in the nurse's office. Erin had to learn how to cope with chronic pain, but also how to communicate how her pain was affecting her.
With POTS, some days, she had difficulty being upright. This made school and exercise very difficult. In order to treat it, she exercises, eats salt, drinks a lot of water, wears compression stockings, and changed her diet. She had to set up a disability plan in order to manage school, where she spent 1-2 hours in classes focusing on her core classes and taking other classes online. POTS made it so that she had very little energy, so she needed to take each day one at a time.
For sensory processing disorder, she experiences sensory stimuli much stronger than others. Sometimes, strong senses are experienced as pain. She used cognitive behavioral therapy strategies to expose herself to stimuli, to reduce their effects on her.
Links:
Erin Magennis
Instagram
Facebook
Twitter
CalmLet
Email us if you have any questions or ideas!
We are on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 24: Finding a Family Navigator with Guest Colette Cox
In this episode, we discuss family navigators. Colette explains that family navigators are people who can help you navigate through and find resources for your child who has special needs and for your family. They are people who can support you when no one else is able. They can help with referrals, education, and 1:1 planning. They know all the ins and outs of everything special needs, and they have been through it all themselves. Family navigators can even attend IEP meetings with you if desired. Some have created peer mentor services as well. She noted that she feels that the hardest system to navigate is the school system. To navigate the school system, it is important to learn how to communicate your vision for school and your child's future. When attending an IEP meeting, it can be helpful to bring notes that you have prepared, bring information about what your child excels at, and be an active participant. Find other parents who have been through this, and utilize Facebook groups, podcasts, and youtube videos that can help you navigate the school system. To help realize your vision of the future, think of your goals and then create next steps. For states that don't have a peer navigator, consider going to your county boards or bureaus of special health needs and asking why this doesn't exist in your area. Parent to parent USA, also has helpful resources.
Links:
Colette Cox
Podcast: Building Buchanan
National Community of Practice
Charting the Life Course
Wright's Law
Parent to Parent USA
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow Thriving on Twitter.
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 23: Finding and Building a Village With Guest Amy Neilsen
In this episode, we discuss finding and building a village, otherwise known as a support network. Amy wrote her book at her lowest point of parenthood. She initially saw autism as an obstacle. She planned for her son to go to ABA for 6 weeks with the expectation that the autism symptoms would remit and then he would be able to go to preschool in the fall. However, things did not go as planned. Her friends were in completely different places emotionally, so she temporarily ended friendships. She decided to seek therapy, particularly with a therapist who worked with families where a member had a developmental disability. She found therapy very helpful, and she learned that she was judging herself for feeling ill equipped for being a special needs parents and that it was ok for her to not have all the answers. She also learned that she needed to build a support system. She found that finding a support network helped her find important answers that she needed to find to feel better equipped as a parent. Amy suggests that one's village should have many layers. Your village should include yourself (including time for self-care and meeting your own needs), your home (getting your home organized and uncluttered), family (physical or emotional support), friends (within the special needs community and outside of the special needs community), professionals (who are experts in areas in which you are not), and nonprofit organizations. The nonprofit organizations offer a lot of resources that can be very helpful. Online Facebook groups can also be good resources. The best way to start building your village is to make a list of every person that you consider someone that is or could be part of your support system, and try to figure out how to move that person from a small part of your support system to a larger part of your support system. Her favorite self-care strategies include taking a bath, doing a skin-care regimen every day, physical activity while her son takes a shower, fitness classes, texting with friends, and talking with friends over Facebook.
Links:
Amy Neilsen
Blog and Podcast
Facebook Group
It Takes A Village Book
Autism Society
Easter Seals
Autism Speaks
Special Needs Alliance
Early Signs of Autism
https://www.autismspeaks.org/signs-autism
https://www.healthychildren.org/English/health-issues/conditions/Autism/Pages/Early-Signs-of-Autism-Spectrum-Disorders.aspx
https://www.cdc.gov/ncbddd/autism/signs.html
MCHAT Free Autism Online Assessment
Far From The Tree
Email us if you have any questions or ideas!
We are now on instagram!
Check out updates on our website.
Follow FUBAR on Twitter
Check us out on Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.
Show Music:
Lion Roar: Lion Roar by Iwan Gabovitch under CC-BY 3.0 License (www.freesound.org)
Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple
Episode 29: Getting Kicked Out Of School
In this episode, we discuss getting kicked out of school. Benji's school initially stated that they we