Shows
Your Child is Normal: with Dr Jessica HochmanThe holistic approach to eczema & practical tips for picky eaters, with Dr Ana Maria TempleSend us a textDr. Ana-Maria Temple is a holistic functional pediatrician practicing in Charlotte, NC and she is the author of two books, "Ending the Eczema Epidemic: Surprising Solutions to Transform Your Child's Skin from Within" and "Healthy Kids in an Unhealthy World: Practical Parenting Tips". In today's episode we discuss her most recent book Ending the Eczema epidemic. Eczema is a frustrating condition affecting 1 in 5 children, and many parents that I meet look for alternative options for treatment. Her books discusses treating eczema using a holistic approach, using diet, supplements, probiotics, various oils etc as tre...2023-04-0341 min
Thriving in the Midst of Chaos: Parenting With Special Needs KidsMaximizing Communication With Your Child With Guest Rosemarie GriffinEpisode 124:Maximizing Communication With Your Child With Guest Rosemarie Griffin In this episode, guest Rosemarie Griffin discusses ways to maximize your communication with your child and ways to help them grow their communication skills. Links: Website 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! We are also on Pinterest! 2022-01-1335 minThriving in the Midst of Chaos: Parenting With Special Needs KidsDemystifying the IEP With Guest Beth LiesenfeldEpisode 123: Demystifying the IEP With Guest Beth Liesenfeld In this episode, we discuss OT in the schools and understanding all the parts of the IEP, to make everything work for each child. Links: 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 us out on Facebook! We are also on Pinterest! Please subscri...2022-01-0654 minThriving in the Midst of Chaos: Parenting With Special Needs KidsPartnering With Care Professionals With Guest Craig ParksEpisode 122: Partnering With Care Professionals With Guest Craig Parks In this episode, guest Craig Parks discusses the best ways to partner with care professionals. Links: Website Email 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! We are also on Pinterest! Please subscribe to our podcast...2021-12-3047 minThriving in the Midst of Chaos: Parenting With Special Needs KidsDivorce and Special Needs ParentingEpisode 121: Divorce and Special Needs Parenting In this episode, Jessica speaks candidly about going through and coping with divorce during the pandemic, while raising children with special needs. 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! We are also on Pinterest! Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leav...2021-12-2317 min
The Spoonie StruggleSpoonie Dating and DivorceEpisode 49: Spoonie Dating and Divorce In this episode, Jessica discusses the trials and tribulations of dating and divorcing while chronically ill. She ponders lots of questions about the "how to" or dating. Website Facebook Instagram Email Twitter 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...2021-12-2217 minThriving in the Midst of Chaos: Parenting With Special Needs KidsBetsy Stover's Experience With Medical TraumaEpisode 120: Betsy Stover's Experience With Medical Trauma In this episode, Betsy Stover, the lovely podcast host of Why Mommy Drinks, discusses her experience with helping her child cope with medical trauma. Her youngest son, Odie, went through two open heart surgeries, one at 2 and one at 5. He coped really well at age 2. However, the doctors didn't listen to him or show him respect after this second surgery and did not explain any medical procedures to him or provide any form of pain management. Betsy discusses how she, her husband, and her son coped with living through and...2021-12-161h 07The Spoonie StruggleSpoonie Self-CareEpisode 48: Spoonie Self-Care In this episode, Jessica offers tons of cheap, quick, and easy suggestions for ways to fit in self-care for spoonies. Website Facebook Instagram Email Twitter 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. Hosted by: Jessica Temple Music by A...2021-12-1520 minThriving in the Midst of Chaos: Parenting With Special Needs KidsI Hate Potty TrainingEpisode 119: I Hate Potty Training In this episode, Jessica discusses the trials and tribulations of potty training children. Spoiler alert: She hates it! 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! 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...2021-12-0912 minThe Spoonie StruggleDistress Management Skills For Beating Pain and BurnoutEpisode 47: Distress Management Skills For Beating Pain and Burnout In this episode, Jessica discusses distress tolerance/management strategies from Dialectical Behavior Therapy and how they can assist with pain, burnout, depression, and anxiety. She provides tons of practical tips. Website Facebook Instagram Email Twitter 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 lik...2021-12-0830 minThriving in the Midst of Chaos: Parenting With Special Needs KidsAll Out of MoneyEpisode 118: All Out of Money In this episode, Jessica discusses the financial toll being chronically ill and raising children with special needs can take, as well as ways to find funding for needed expenses. 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! We are also on Pinterest! Please subscribe to our podcast in the iTune...2021-12-0227 minThe Spoonie StruggleBeating Pain and Spoonie Burnout Through MindfulnessEpisode 46: Beating Pain and Spoonie Burnout Through Mindfulness In this episode, Jessica discusses how mindfulness can benefit everyone and how it can help minimize pain, anxiety, depressed mood, and burnout. She provides tons of mindfulness strategies. Website Facebook Instagram Email Twitter 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 sup...2021-12-0124 minThe Spoonie StruggleThe Spoonie BurnoutEpisode 45: The Spoonie Burnout In this episode, Jessica discusses the reality of burnout when you have chronic illness. She discusses what it is, signs and symptoms, causes, and what to do about it. Website Facebook Instagram Email Twitter 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 pod...2021-11-2418 minThriving in the Midst of Chaos: Parenting With Special Needs KidsThe Impossibility of Finding TherapiesEpisode 116: The Impossibility of Finding Therapies In this episode, Jessica discusses how hard it can be to slog through therapies, therapists, insurance, funded programs, and the like to try, and fail, to find the proper therapies for your 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! We are also on Pinterest! Please subscribe to our podc...2021-11-1820 minThe Spoonie StruggleAdvocacy In The Medical WorldEpisode 44: Advocacy In The Medical World In this episode, Jessica provides tons of useful tips and tricks for making medical appointments work for you, minimize gaslighting and discrimination, and minimize any mistakes or errors. Website Facebook Instagram Email Twitter 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 thi...2021-11-1727 minThriving in the Midst of Chaos: Parenting With Special Needs KidsNavigating Insurance - Again!Episode 115: Navigating Insurance - Again! In this episode, Jessica discusses the trials and tribulations of finding therapies that will take your insurance, as well as finding funding to finance different therapies. 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! We are also on Pinterest! Please subscribe to our podcast in the iTunes store, or wherever you find...2021-11-1119 minThe Spoonie StruggleSpoonie Self-AdvocacyEpisode 43: Spoonie Self-Advocacy In this episode, Jessica discusses tips and tricks for advocating for yourself on a daily basis, with yourself, friends, family, work, and the community. Website Facebook Instagram Email Twitter 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. Hosted by: Jessica Tem...2021-11-1038 minThriving in the Midst of Chaos: Parenting With Special Needs KidsParenting Special Needs Kids While Being Chronically IllEpisode 114: Parenting Special Needs Kids While Being Chronically Ill In this episode, Jessica discusses having a chronic illness/disability while raising special needs children who are constantly in crisis. Spoiler alert: It isn't easy! 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! We are also on Pinterest! Please subscribe to our podcast in the iTunes store, or...2021-11-0425 minThe Spoonie StruggleSpoonie Parenting of Special Needs KidsEpisode 42: Spoonie Parenting of Special Needs Kids In this episode, Jessica provides updates on the struggles of being a parent with a chronic illness/disability while also raising two children with special needs. She talks about the state of finances for children and adults with chronic needs, the difficulty of finding adequate treatment, and living life in a constant crisis. Website Facebook Instagram Email Twitter Please subscribe to our podcast in the iTunes store, or wherev...2021-11-0326 minThe Spoonie StruggleUsing Massage and Movement for Pain Management With Guest Sam VisnicEpisode 41: Using Massage and Movement for Pain Management With Guest Sam Visnic In this episode, guest Sam Visnic discusses using physical therapy, movement, and massage therapy to assist with chronic pain management. When working with a new client, he always starts with a thorough evaluation and plan. He stresses the importance of sleep on reducing symptoms of chronic pain. He works with them to mimic doing manual therapy and movement therapy exercises on their own. He does a lot of experimenting and trial and error to figure out what works best for the individual. Different types of...2021-10-2953 minThriving in the Midst of Chaos: Parenting With Special Needs KidsLindsay Passodelis' Experience Growing Up With CLOVES SyndromeEpisode 113: Lindsay Passodelis' Experience Growing Up With CLOVES Syndrome In this episode, guest Lindsay shares her experience growing up with CLOVES syndrome. CLOVES is a rare overgrowth syndrome with vascular anomalies. Congential lipomatous overgrowth vascular malformation epidermal nevus spinal skeletal anomalies (CLOVES). Everyone has different symptoms, of which there are many. It is caused by a genetic mutation in PIK3CA gene. It is not hereditary. Medical exams would pick up the syndrome. You can also undergo genetic testing to confirm the syndrome. Treatment includes surgery, sclerotherapy, and various medications. Lindsay showed signs of CLOVES at birth...2021-10-2833 minThriving in the Midst of Chaos: Parenting With Special Needs KidsLia McCabe's Experience Raising Two Daughters With AutismEpisode 112: Lia McCabe's Experience Raising Two Daughters With Autism In this episode, guest Lia McCabe discusses her experience raising two children with autism, as well as giving back to the autism community. She noticed signs right away in her first daughter that something was amiss. However, the signs in her other daughter were totally different. She noted that it was hard to get the diagnosis of autism with her first daughter, because she didn’t know much about autism at the time. They had had all sorts of expectation for their children's futures, all of whi...2021-10-2139 minThe Spoonie StruggleDarren Radke's Experience Living With Lupus and Antiphospholipid SyndromeEpisode 40: Darren Radke's Experience Living With Lupus and Antiphospholipid Syndrome In this episode, guest Darren Radke shares his experience living with Lupus and Antiphospholipid Syndrome. He also was diagnosed as a having a hippocampal cyst in his brain, an issue with a heart valve, and a lung issue. His symptoms initially came on really fast, but doctors couldn’t figure out what was going on. He was eventually found to have 2 blood clots. He was immediately placed on blood thinners. He was diagnosed at that time with Lupus, but there was no mention of APS. Yea...2021-10-2052 minThriving in the Midst of Chaos: Parenting With Special Needs KidsJournaling For Mindfulness With Guest Josephine AtluriEpisode 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 t...2021-10-1458 minThe Spoonie StruggleThe Ins and Outs of Antiphospholipid Syndrome With Guest Dr. Jill SchofieldEpisode 39: The Ins and Outs of Antiphospholipid Syndrome With Guest Dr. Jill Schofield In this episode, guest Dr. Schofield discusses Antiphospholipid Syndrome. APS is a complex multisystem autoimmune disease. It is often comorbid with Lupus. It can be primary or secondary. Females are more likely to have APS than males. It tends to occur more in younger females. Women are more likely to have memory loss and migraines than males. This is a lifelong disorder, although as one ages, the antibodies might go away. Symptoms can include migraines, memory loss, stroke, POTS symptoms, s...2021-10-131h 06Thriving in the Midst of Chaos: Parenting With Special Needs KidsUpdates, Crises, and OverwhelmEpisode 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! Links: Chronicles of Zazzles: Connective Tiss...2021-10-0737 minThe Spoonie StruggleUpdates, Crises, and OverwhelmEpisode 38: 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! Links: Chronicles of Zazzles: Connective Tiss...2021-10-0638 minThriving in the Midst of Chaos: Parenting With Special Needs KidsExecutive Functioning Tips From ADHD Coaching With Dr. Norrine RussellEpisode 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 f...2021-09-3051 minThe Spoonie StruggleTreatment and Management of Ehlers Danlos With Guest Dr. Alissa ZingmanEpisode 37: Treatment and Management of Ehlers Danlos With Guest Dr. Alissa Zingman In this episode, Dr. Alissa Zingman discusses management and treatment of Ehlers Danlos Syndrome. Dr. Zingman started to have symptoms of EDS in elementary school, with stomach aches and heel pain. She was very athletic and danced, but kept getting injured and having knee dislocations. She decided to become an orthopedic surgeon when she was attending medical school. After her daughter was born, she started to have a lot of EDS complications, including POTS and MCAS, which led to a career transition. 2021-09-291h 01Thriving in the Midst of Chaos: Parenting With Special Needs KidsLearning An Instrument When One Has Special Needs With Guest Delwyn McKenzieEpisode 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 ex...2021-09-2354 minThe Spoonie StruggleKim "Kid" Curry's Story of Living With Multiple SclerosisEpisode 36: Kim "Kid" Curry's Story of Living With Multiple Sclerosis In this episode, Kim "Kid" Curry discusses his experience with Multiple Sclerosis. Early on in his career, he started feeling stinging sensations in his legs, but he wrote it off as possibly being bitten by fire ants. Later, his eyes were an issue, he was having difficulty with mobility, and he felt like he was bitten, but he again wrote it off. One day years later, he was on his way for a tour at the White House and he had a stress reaction, which led to...2021-09-2249 minThriving in the Midst of Chaos: Parenting With Special Needs KidsPromoting Reading In Children With Learning Disabilities With Guest Dr. Maria ClearyEpisode 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 w...2021-09-1653 minThe Spoonie StruggleBoronia Fallshaw's Story of Living With VulvodyniaEpisode 35: Boronia Fallshaw's Story of Living With Vulvodynia In this episode, Boronia Fallshaw discusses her experience with vulvodynia. Beginning with her first experience with intercourse at age 18, Boronia began to experience vulvodynia. In this condition, every time a person has sex, it feels like they have razor blades inside them. The pain can last for days afterward, including swelling, painful urination, and discomfort when sitting down. She started to feel like less of a woman and felt like she was losing her identity. The doctors told her that her problem was psychological and brushed it off. She...2021-09-151h 01Thriving in the Midst of Chaos: Parenting With Special Needs KidsUsing Summer To Create An Amazing School Year With Guest Dr. Laura ReberEpisode 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...2021-09-0945 minThe Spoonie StruggleHealth Coaching For Teens With Guest Denise Archilla, MSWEpisode 34: Health Coaching For Teens With Guest Denise Archilla, MSW In this episode, guest Denise Archilla discusses chronic illness coaching! Some struggles young folks with chronic illnesses face include unpredictability of age during a time of transition, trying to blend in with peers, social media, people being able to video tape mistakes, accessing education, friendships, friend groups changing, limitations in things they can do with their friends, fatiguing easily, not being able to keep up with friends, judgment of others when you don’t look sick,and being seen in public with a wheelchair or feeding tube. For...2021-09-0851 minThriving in the Midst of Chaos: Parenting With Special Needs KidsBassie Shemtov's Experience Creating Inclusive Communities and Employment OpportunitiesEpisode 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...2021-09-0236 minThe Spoonie StrugglePaul Forchione's Story of Living With Cerebral PalsyEpisode 33: Paul Forchione's Story of Living With Cerebral Palsy In this episode, Paul Forchione shares his story of living with Cerebral Palsy. He was diagbnosed with CP at 2-3 months old. The CP affects mostly his right side. He started physical therapy on a daily basis, which allowed him to learn to walk. Surgery on the tendon on the right side of his foot also helped improve his mobility. His increased mobility after this surgery helped him feel like he was able to fit in with his peers better. He experienced discrimination by peers in middle school...2021-09-0141 minThe Spoonie StruggleHannah Budde's Story of Hypermobile Ehlers Danlos Syndrome and Mild TBIEpisode 32: Hannah Budde's Story of Hypermobile Ehlers Danlos Syndrome and Mild TBI In this episode, guest Hannah Budde shares her story with mTBI and hypermobile EDS. She also has POTS, pelvic floor dysfunction and prolapse, interstitial cystitis, craniocervical instability, asthma, and thoracic outlet syndrome. She has experienced several head injuries. Her last one was in 2013, and she experienced brain fog, fatigue, and head and neck pain. She went to a brain injury clinic, which was really helpful for her. In 2018, she moved and she was involved in physical rehabilitation, where a neuropsychologist told her that her problems...2021-08-251h 06Thriving in the Midst of Chaos: Parenting With Special Needs KidsRaising a Child with STXBP1 With Guest Chloe WeberEpisode 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...2021-08-1942 minThe Spoonie StruggleDafne Wiswell's Story of Raising Children With Type 1 Diabetes and Ankylosing SpondylitisEpisode 31: 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 dia...2021-08-1849 minThe Spoonie StruggleDafne Wiswell's Story of Rheumatoid Arthritis and Hashimoto's ThyroiditisEpisode 30: Dafne Wiswell's Story of Rheumatoid Arthritis and Hashimoto's Thyroiditis In this episode, Dafne Wiswell shares her story of Rheumatoid Arthritis and Hashimoto’s Hypothyroidism. Through diet, spirituality/faith-based practices, setting boundaries, and practicing forgiveness, she was able to eliminate Rheumatoid Arthritis from her experience. She was diagnosed with RA based on imaging. Six months later, she was experiencing extreme fatigue and was sent for bloodwork, which revealed Hashimoto’s Hypothyroidism. She goes out of her way to find good doctors and advocates for herself by leaving doctors if they do not provide good care. Her current regi...2021-08-1138 minThe Spoonie StruggleRaising a Child With Marfan Syndrome With Guest Allison PullinsEpisode 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 len...2021-08-041h 02Thriving in the Midst of Chaos: Parenting With Special Needs KidsRaising a Child With Spinal Muscular Atrophy With Guest Megan FabriziEpisode 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...2021-07-2935 minThe Spoonie StruggleDavid Einsohn's Story With Ankylosing SpondylitisEpisode 28: David Einsohn's Story With Ankylosing Spondylitis In this episode, we discuss David Einsohn’s story with Ankylosing Spondylitis. David started experiencing problems with his legs and back when he was almost 10. He started having difficulty breathing, weakness in his legs, lower back pain, and stiff hips. Doctors initially suspected polio and Guillan Barre. It took over a year to finally find a proper diagnosis, which was eventually detected through an X-ray. Medications helped him significantly through much of the rest of childhood. There were periods where he was in a wheelchair or had long hospital stays....2021-07-2841 minThe Spoonie StruggleMaking Physical Therapy Work For Ehlers Danlos Syndrome with Guest Dr. Logan SwisherEpisode 27: Making Physical Therapy Work For Ehlers Danlos Syndrome with Guest Dr. Logan Swisher In this episode, Dr. Logan Swisher discusses physical therapy and Ehlers Danlos Syndrome. EDS is a connective tissue disorder that affects the person’s whole body. Symptoms can range from mild to debilitating. Our joints are supported by ligaments, tendons, and muscles. If the ligaments are stretched out like in EDS, a person relies more heavily on their muscles to support them. The muscles work so hard, causing muscle pain. Physical therapists notice in patients with EDS chronic pain and pain doing day-to-day act...2021-07-211h 08Thriving in the Midst of Chaos: Parenting With Special Needs KidsDafne Wiswell's Story of Raising Children With Type 1 Diabetes and Ankylosing SpondylitisEpisode 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 dia...2021-07-1556 minThe Spoonie StruggleAmanda Semenoff's Story of Living With Crohn's DiseaseEpisode 26: Amanda Semenoff's Story of Living With Crohn's Disease In this episode, Amanda Semenoff discusses her experience with Crohn’s disease. Misdiagnoses included psychiatric conditions, lupus, pregnancy, eating disorders, and stress. She found that once she had a formal diagnosis, doctors started to take her complaints more seriously and treatment was started more quickly. Her triggers include certain foods such as soy, heat,and stringy fibrous vegetables. She is diligent about calling ahead at restaurants to find out all the ingredients and to determine what she can safely eat. She has to be careful about which medications she...2021-07-141h 02Thriving in the Midst of Chaos: Parenting With Special Needs KidsRaising a Child With Marfan Syndrome With Guest Allison PullinsEpisode 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 di...2021-07-081h 01The Spoonie StruggleAlex Haut's Story with Ehlers Danlos SyndromeEpisode 25: Alex Haut's Story with Ehlers Danlos Syndrome In this episode, Alex Haut discusses her experience with growing up with Ehlers Danlos Syndrome, arthritis, and ulnar nerve entrapment. She also has GI and liver issues. She was diagnosed by her pediatrician when she was in elementary school. She was shocked to be told she had the condition and didn’t quite understand what a chronic condition was at that age. She is currently living in Thailand. She copes by using a red light therapy device, ignoring pain, exercise, knee strengthening, staying busy, and resting. Her rig...2021-07-0741 minThe Spoonie StruggleLet's Talk About Crohn's DiseaseEpisode 24: Let's Talk About Crohn's Disease Crohn’s Disease is one type of inflammatory bowel disease and differs by person. Symptoms include diarrhea, fever, fatigue, abdominal pain and cramping, blood in the stool, mouth sores, reduced appetite, weight loss, inflammation of the skin, eyes, and joints, inflammation of the liver or bile ducts, kidney stones, anemia, delayed growth or sexual development in children, urgent need to move bowels, constipation, bowel obstruction, fissures, fistulas, and strictures. Diagnosis is made through blood tests, stool studies, colonoscopy, CT, MRI, capsule endoscopy, or balloon assisted enteroscopy. Treatments include medications, nutrition therapy, su...2021-07-0511 minThriving in the Midst of Chaos: Parenting With Special Needs KidsAlternative Childcare Solutions With Guest Shannon ParolaEpisode 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 do...2021-07-0147 minThe Spoonie StruggleAn Insider's Look At MAST Cell Activation Syndrome With Guest Dr. Jill SchofieldEpisode 23: An Insider's Look At MAST Cell Activation Syndrome With Guest Dr. Jill Schofield In this episode, Dr. Jill Schofield discusses MAST cell activation syndrome. MAST cells are used to fight off foreign invaders and are present in all areas of the body, but most in the GI tract, genitourinary tract, skin, and sinus system. When they go awry, it causes inflammatory effects. In MCAS, mast cells are inappropriately activated. MCAS can be primary or secondary (to development of autoimmune disease, exposure to mold, Lyme disease, or COVID). Symptoms often can start in very young children. There a...2021-06-301h 08The Spoonie StruggleLet's Talk About Complex Regional Pain SyndromeEpisode 22: Let's Talk About Complex Regional Pain Syndrome Complex Regional Pain Syndrome is a condition defined by prolonged pain and inflammation following an injury to the arm or leg. Symptoms include constant or fluctuating pain after contact or use, changes in skin temperature, skin color, swelling of the affected limb, abnormal sweating and nail and hair growth, stiffness in the affected joints, wasting away or excess bone growth,and impaired muscle strength and movement. CPRS is caused by injury to peripheral sensory nerves and can be caused by fractures, surgery, strains and sprains, burns, cuts, or limb...2021-06-2810 minThe Spoonie StruggleManaging Chronic Pain With Dr. Linda BluesteinEpisode 21: Managing Chronic Pain With Dr. Linda Bluestein In this episode, Dr. Linda Bluestein discusses Ehlers Danlos Syndrome, Fibromyalgia, and chronic pain. Dr. Bluestein noted that it took her over 40 years to get diagnosed with EDS, and once her symptoms caught up with her, she made a career shift to help individuals with EDS. Shortly after she was diagnosed, she started two podcasts, Hypermobility Happy Hour and Bendy Bodies. There are 6 types of pain include visceral pain (body organ pain), nociceptive pain (actual tissue damage), neuropathic pain (damage within the nervous system or coming from...2021-06-231h 12The Spoonie StruggleLet's Talk About Trigeminal NeuralgiaEpisode 20: Let's Talk About Trigeminal Neuralgia Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerves. Symptoms include bouts of facial pain, aching and burning in the face, and pain that gets worse over time. It is usually caused by disruption of function of the trigeminal nerve, aging, multiple sclerosis, a tumor, stroke, surgical injury, or facial trauma. It is diagnosed by symptoms presentation, neurological examination, and/or MRI. Treatment includes medications, botox injections, microvascular decompression, glycerol injection, balloon compression, radiofrequency thermal lesioning, gamma knife surgery, rhizotomy, neurectomy, and complementary approaches. L...2021-06-2108 minThriving in the Midst of Chaos: Parenting With Special Needs KidsBuilding Independence in Your Children With Special Needs With Dr. Sarah AllenEpisode 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...2021-06-1758 minThe Spoonie StruggleMonica Michelle's Story With EDS, CRPS, MCAS, and POTSEpisode 19: Monica Michelle's Story With EDS, CRPS, MCAS, and POTS In this episode, Monica Michelle discusses her chronic illness story with EDS, MCAS, POTS, Fibromyalgia, CRPS, and more. Monica and Jessica go on a lot of fun soap-box rants about the state of healthcare and disability. They discuss the use of mobility aids, and awesome tips and tricks to stay safe. We chat about the complexities of MCAS and trying to figure out our triggers. Jessica rants about how expensive chronic illness is and how much it affects ones finances. Monica discusses the combination of treatments that...2021-06-161h 20The Spoonie StruggleLet's Talk About Postural Orthostatic Tachycardia SyndromeEpisode 18: Let's Talk About Postural Orthostatic Tachycardia Syndrome In this episode, we discuss all things POTS. POTS is a type of dysautonomia. The episode discusses the autonomic nervous system as well as the sympathetic and parasympathetic nervous systems and how they play a role in dysautonomia. Symptoms vary widely by person but can include blood pressure and pulse changes when standing, fatigue, dizziness, headaches, heart palpitations, nausea, cognitive changes, shaking, fainting, coldness or pain in the extremities, shortness of breath, chest pain, GI and bladder problems, and poor sleep. POTS can be caused by another condition or...2021-06-1411 minThe Spoonie StruggleDawn Veselka's Story of Raising a Child With Mixed Connective Tissue DiseaseEpisode 17: 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 he...2021-06-091h 11The Spoonie StruggleLet's Talk About Marfan SyndromeEpisode 16: Let's Talk About Marfan Syndrome In this episode, we discuss all things Marfan Syndrome. Marfan Syndrome is a genetic condition that affects the connective tissues. Symptoms include long arms, legs, and fingers, tall and thin body type, curved spine, chest sticking out or in, flexible joints, flat feet, stretch marks, heart conditions, eye conditions, lung conditions, and other symptoms. It is diagnosed via blood tests, echocardiograms, EKG, eye examination, and imaging. Treatment includes medications to minimize symptoms, and occasionally, surgery. Links: Resources Find a Doctor ...2021-06-0706 minThe Spoonie StruggleLara Bloom's, of the Ehlers Danlos Society, Story With Ehlers Danlos and Associated SyndromesEpisode 15: Lara Bloom's, of the Ehlers Danlos Society, Story With Ehlers Danlos and Associated Syndromes In this episode, President and CEO of the Ehlers Danlos Society, Lara Bloom shares her story of living with Ehlers Danlos Syndrome. She was diagnosed with EDS at age 24, but was initially misdiagnosed with Marfan’s Syndrome. It took 12 years for her to get formally diagnosed. Even though her presentation was textbook for a connective tissue disorder, she wasn’t taken seriously for a long time. Over time, her presentation of symptoms have changed somewhat, and her doctors are still in th...2021-06-021h 08The Spoonie StruggleLet's Talk About Sickle Cell DiseaseEpisode 14: Let's Talk About Sickle Cell Disease In this episode, we discuss all things Sickle Cell Disease. Sickle Cell Disease is an inherited red blood cell disorder in which there aren't enough healthy red blood cells to carry oxygen throughout the body. There are multiple types of the disease. Symptoms include pain, swelling of the hands and feet, malnutrition, slowed growth, vision problems, and more. Complications include splenic sequestration, stroke, acute chest syndrome, pulmonary hypertension, organ damage, DVT and PE. Diagnosis is completed by blood test. The most effective treatments include bone marrow or stem cell transplant.2021-05-3106 minThe Spoonie StruggleSmooth Sailing Spoonie ER Visits With Guest Dr. Harvey CastroEpisode 13: Smooth Sailing Spoonie ER Visits With Guest Dr. Harvey Castro In this episode, we discuss making ER visits more smooth sailing for spoonies and zebras. Guest Dr. Harvey Castro feels that it is important for the ER docs to spend adequate time with the patient, and for the patient not to have to tell their story repeatedly while in the ER. He feels that it is appropriate to go to the ER when the individual feels it is appropriate. Only you know your body, and it is better to be safe, than sorry. Err on the...2021-05-2647 minThe Spoonie StruggleLet's Talk About EndometriosisEpisode 12: Let's Talk About Endometriosis In this episode, we discuss all things Endometriosis. Endometriosis is a painful disorder where the tissue that typically lives inside the uterus begins to grow outside the uterus. Symptoms can include pain, urinary or bowel symptoms, fatigue, infertility, changes in menstruation, and many others. There are multiple hypotheses as to the cause. Diagnosis can be made via pelvic examination, ultrasound, MRI, or laparoscopy. Treatment includes management of pain, hormone therapy, or surgery. Links: Treatments Coping Stages Resources ...2021-05-2409 minThe Spoonie StruggleShayla Symone's Story With Ehlers Danlos Syndrome and Racial DiscriminationEpisode 11: Shayla Symone's Story With Ehlers Danlos Syndrome and Racial Discrimination In this episode, we discuss Shayla Symone’s story with Ehlers Danlos Syndrome. She also has POTS, IBS, and Fibromyalgia. Shayla began to experience symptoms of EDS when she was in elementary school and was formally diagnosed in 2018/2019, a span of almost 15 years. Shayla assumed that all children experienced chronic pain, and didn’t know that it wasn’t normal to experience symptoms like that until she was an adult. Until her formal diagnosis, she was told that her issues were primarily psychological, rather than physical. One phy...2021-05-191h 16The Spoonie StruggleLet's Talk About Ankylosing SpondylitisEpisode 10: Let's Talk About Ankylosing Spondylitis In this episode, we discuss all things Ankylosing spondylitis. Ankylosing spondylitis is a form of arthritis that affects the spine and other joints, causing chronic pain. It can also affect the eyes. It is thought to be genetic. Diagnosis is made vis clinical examination and bloodwork. Treatment is dependent on symptoms and the goal is to relieve pain and stiffness and prevent or delay complications and spinal deformity. Links: Educational Materials Webinars Support Groups Online Groups Links:2021-05-1708 minThe Spoonie StruggleDisability Law With Guest Andrew KantorEpisode 9:Disability Law With Guest Andrew Kantor In this episode, we discuss disability law (ERISA law). Disability discrimination is defined as when you need accommodations and your workplace denies you, even though it would allow you to continue to do your job. Disability law is related to when insurance companies don’t pay for disability benefits when the person is due disability. Private disability insurance through work is governed through ERISA law. In this case, even accommodations would not allow you to do your job. You cannot have a disability discrimination and disability case at the same ti...2021-05-121h 03The Spoonie StruggleLet's Talk About Multiple SclerosisEpisode 8: Let's Talk About Multiple Sclerosis In this episode, we discuss all things Multiple sclerosis. Multiple sclerosis is a chronic disease of the central nervous system, that attacks the myelin that covers the nerve fibers in the brain and spinal cord. Symptoms vary widely, but can include pain, numbness/tingling, eye manifestations, fatigue, difficulty walking, trouble with the bowel or bladder, vision changes, spasticity, cognitive and mood changes, speech problems, swallowing problems, and mood. There are varying courses of Multiple sclerosis. Multiple sclerosis is diagnosed via spinal tap, brain and spinal cord imaging, blood tests, and evoked...2021-05-1012 minThe Spoonie StruggleChase Joseph's Story With RSD, EDS, Tics, Dysautonomia, and AutismEpisode 7: Chase Joseph's Story With RSD, EDS, Tics, Dysautonomia, and Autism In this episode, we discuss Chase Joseph’s story. Chase was diagnosed with autism, Ehlers Danlos Syndrome, OCD, ADHD, dysautonomia (neutrally mediated hypertension), costochondritis, and gastroparesis. When he was 14, he had an exploratory laparotomy, and the surgeon nicked his bowels. The leg compressions in the hospital after that procedure were put on so tight that his muscles atrophied. He was later diagnosed with RSD from the whole ordeal. When he was 16, his tic disorder became so severe that he needed to be sedated at the hospital and...2021-05-0542 minThe Spoonie StruggleLet's Talk About LupusEpisode 6: Let's Talk About Lupus In this episode, we talk about all things Lupus. Lupus (focusing on SLE) is a chronic autoimmune disease that causes inflammation and pain in any part of the body. There are several different types of lupus. Symptoms include fatigue, joint pain or swelling, headaches, fevers, sun sensitivity, butterfly rash, Raynaud’s, and others. It is a genetic condition often diagnosed via blood and urine tests. Treatment can include various medications to address the different symptoms. Links: Symptoms Daily Life Living With Lupus Website Fa...2021-05-0307 minThe Spoonie StruggleLet's Talk About Sjogren's SyndromeEpisode 5: Let's Talk About Sjogren's Syndrome In this episode, we discuss all things Sjogren’s Syndrome. Sjogren’s Syndrome is an autoimmune disease that causes dry eye, dry mouth, fatigue, and joint pain. Additionally, it can cause damage to other organs. It is diagnosed via blood tests, eye tests, and dental tests and is treated with medication and lifestyle changes to minimize uncomfortable symptoms. Links: Your Future Survival Tips Stories Support Groups Website Facebook Instagram Email Twitter Please subscribe to our podcast in t...2021-04-2811 minThe Spoonie StruggleLet's Talk Ehlers Danlos SyndromeEpisode 4: Let's Talk Ehlers Danlos Syndrome In this episode, we discuss all things Ehlers Danlos Syndrome. EDS is a group of usually inherited connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Symptoms vary, but can include widespread joint and muscle pain, walking difficulty, dislocations and subluxations, poor wound healing, problems with the GI system, heart, dysautonomia, headaches, mouth symptoms, sleep, and much much much more. Diagnosis is tough but is sometimes made via genetic testing or clinical symptoms. Treatment varies depending on the symptoms and the clinical manifestations. Links: ...2021-04-2625 minThriving in the Midst of Chaos: Parenting With Special Needs KidsFostering and Adoption Journeys With Children With Special Needs With Guest Daniel HallEpisode 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...2021-04-221h 05The Spoonie StruggleLewis Temple's story with Ehlers Danlos SyndromeEpisode 3: Lewis Temple's story with Ehlers Danlos Syndrome In this episode, guest Lewis Temple shares his story of living life with Ehlers Danlos Syndrome (EDS). He also has POTS, craniocervical and atlantoaxial instability, migraines, dislocations, trigger finger, and TMJ. It took him years to finally get a proper diagnosis. He start getting formal diagnoses at age 23. He received several misdiagnoses along the way. Lewis found that although some doctors listened to him, others didn’t, some looked only for the easiest answers, and some prescribed harmful treatments. Challenges include brain fog, chronic pain, finding doctors who will li...2021-04-2135 minThriving in the Midst of Chaos: Parenting With Special Needs KidsInfant Feeding Challenges With Guest Mallory MilletEpisode 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 m...2021-04-1554 minThe Spoonie StruggleJessica Temple's Story with Ehlers Danlos SyndromeEpisode 2: Jessica Temple's Story with Ehlers Danlos Syndrome In this episode, host Jessica Temple shares her chronic illness journey. She discusses that her medical journey started at age 2, and finally got a formal accurate diagnosis in November 2020. She has a diagnosis of Ehlers Danlos Syndrome, with a ton of associate conditions, such as POTS, gastroparesis, possible MCAS, possible tethered cord, arthritis, possible chiari malformation, thoracic outlet syndrome, tachycardia, central vestibular dysfunction, possible craniocervical and atlantoaxial instability, occipital neuralgia, and many others. Although she was always sick as a kid, it got worse at age 18, then in 2007, 2010, and 2019...2021-04-1457 minThe Spoonie StruggleThe Spoonie StruggleEpisode 1: The Spoonie Struggle In this episode, host Jessica defines what a "spoonie" is, as well as the name "The Spoonie Struggle." She discusses the purpose of and vision of the podcast. She also rants about everyone's favorite questions "what is your current pain level from 0-10?" Links: Website Facebook Instagram Email Twitter 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...2021-04-0315 minThe Spoonie StruggleThe Spoonie Struggle TrailerThe Spoonie Struggle is about the raw, honest look at living life with chronic illnesses and chronic pain conditions. Spoonies of all types are welcome to join us, but we will have a heavier focus on the lesser common, lesser understood, and difficult to diagnose conditions, such as Ehlers Danlos, Marfan’s, Ankylosing spondylitis, Sjogren’s syndrome, lupus, multiple sclerosis, sickle cell anemia, and endometriosis. In this show, we will discuss our own experiences of each aspect of life with our chronic health conditions, speak with other spoonies about their experiences, discuss coping, advocating, and self-care related to chronic illn...2021-04-0302 minThriving in the Midst of Chaos: Parenting With Special Needs KidsSpecial Needs Superheros with Guest John BesoldBonus 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 Facebook B...2021-03-2917 minThriving in the Midst of Chaos: Parenting With Special Needs KidsA Blind View With Guest Ashley WayneEpisode 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 ma...2021-02-2544 minThriving in the Midst of Chaos: Parenting With Special Needs KidsShaping Our Children Through Reading With Guest Sara BradfordEpisode 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...2021-02-181h 01Thriving in the Midst of Chaos: Parenting With Special Needs KidsOnline Speech Therapy With Guest Leanne SherredEpisode 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...2021-01-0746 minThriving in the Midst of Chaos: Parenting With Special Needs KidsLiving With Auditory Processing DisorderBonus 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...2020-12-3019 minThriving in the Midst of Chaos: Parenting With Special Needs KidsAuditory Processing Disorder With Guest Lilach SapersteinEpisode 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. A...2020-12-281h 02Thriving in the Midst of Chaos: Parenting With Special Needs KidsOur Crises of FaithEpisode 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 fol...2020-12-2329 minThriving in the Midst of Chaos: Parenting With Special Needs KidsBullying Prevention With Guest Dr. Claire Thomas-DuckwitzEpisode 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...2020-12-101h 34Thriving in the Midst of Chaos: Parenting With Special Needs KidsMindful Mama Mindful Child With Guest Josephine AtluriEpisode 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...2020-11-2557 minThriving in the Midst of Chaos: Parenting With Special Needs KidsRaising a Child With Down’s Syndrome Into Adulthood With Guest Yvonne PierreEpisode 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...2020-11-191h 02Thriving in the Midst of Chaos: Parenting With Special Needs KidsStanding Strong For Your Child With Guest Jessica BarisanoEpisode 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...2020-10-081h 23Thriving in the Midst of Chaos: Parenting With Special Needs KidsDiagnosis and Treatment Across The World With Guests Jao and Jyothi TekwaniEpisode 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...2020-09-1720 minThriving in the Midst of Chaos: Parenting With Special Needs KidsSearching For Diagnosis and Treatment With Guest Keikilani JacksonEpisode 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...2020-09-101h 02Thriving in the Midst of Chaos: Parenting With Special Needs KidsFinding Special Needs Resources With Guest Contessa Louise CooperEpisode 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...2020-08-1356 minThriving in the Midst of Chaos: Parenting With Special Needs KidsBeating Burnout in 2020Episode 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...2020-08-0638 minThriving in the Midst of Chaos: Parenting With Special Needs KidsWriting Your Special Needs Journey With Guest Anne FrickeEpisode 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...2020-06-111h 07Thriving in the Midst of Chaos: Parenting With Special Needs KidsHaving Autism Spectrum Disorder in The Entertainment Industry With Guest Trey OldsEpisode 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...2020-05-2838 minThriving in the Midst of Chaos: Parenting With Special Needs KidsBeating All The Odds With Guest Linda SmithEpisode 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...2020-05-141h 01Thriving in the Midst of Chaos: Parenting With Special Needs KidsHearing Loss And Achieving Your Fullest Potential With Guest Theresa HarpEpisode 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...2020-04-161h 18