Thriving in the Midst of Chaos: Parenting With Special Needs Kids

Welcome to Thriving in the Midst of Chaos! This show is about surviving parenthood while having a child with special needs, while attempting to keep your self and your sanity intact. We share our experiences and discuss how we survived, what worked for us, and what didn’t work for us. This is a nonjudgmental space, to realize that we all actually WILL live through this and to make thriving in parenthood an actual possibility. We will also be sharing fails, nails, and comical tales, as well as one self-care strategy each week that helped keep us sane.

Maximizing Communication With Your Child With Guest Rosemarie Griffin 01/13/2022

Demystifying the IEP With Guest Beth Liesenfeld 01/06/2022

Partnering With Care Professionals With Guest Craig Parks 12/30/2021

Divorce and Special Needs Parenting 12/23/2021

Betsy Stover's Experience With Medical Trauma 12/16/2021

I Hate Potty Training 12/09/2021

All Out of Money 12/02/2021

Thriving Through The Holidays 11/25/2021

Thriving Through The Holidays Episode 117: Thriving Through The Holidays In this episode, Dr. Koonce discusses the best ways to thrive through the holidays with children who have special needs. She also discusses helpful at-home ABA strategies. It is important to prepare for the holidays with your special needs kids for many reasons, including loss of routine, change in structure, trying to set a new routine for a short time, having other people living in or visiting in our space, more planning for things that are new, eating schedules, bathing schedules, navigating face masks, and fatigue. She recommends that you as a parent see what emotional resources you have available before trying a lot of new things during the holidays. Keep your children in contact with some daily routines during the holiday season. Figure out where your strengths are, and play up those. Think about what is actually doable for you and your family during the holiday break. Use a tag-team approach. Preplan all troubleshooting, when possible. Try to set up a village or community with other parents, in order to have a partnership or extra assistance. For family who cannot make it in person to celebrate the holidays, find creative ways to “include” them. Schedule things based on activities rather than time. Make sure to keep your needs in mind and offer yourself self-care. Don’t try to make things perfect. Instead, focus on the things that mean the most to you. Involve your children in the activities as much as possible, in ways they can participate. Share experiences with them. Plan fun activities to look forward to in the future. The best at-home ABA strategy is to create antecedent interventions. Figure out what you and your child need in the moment. Model behaviors that you want them to do. It is ok for us to make mistakes. Think about what is actually doable. Ask providers what you can do in the meantime while you are on the waiting list. Do other therapies in the meantime. Consider a one-time consult to help in the interim. ABA can also provide recommendations to your school providers for ways that the school could help support or help that child. Sometimes, you can start in clinic ABA prior to starting at-home ABA. Dr. Koonce recommends several ways to find trainings for parents in ABA. Reach out to local universities, as practicum students may be able to offer trainings for credit. There are lots of online ABA trainings as well. There can be live online collaborations or courses. You can go through the registered behavior technician trainings. 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/index/show/fubarpod/id/21231692

The Impossibility of Finding Therapies 11/18/2021

Navigating Insurance - Again! 11/11/2021

Parenting Special Needs Kids While Being Chronically Ill 11/04/2021

Lindsay Passodelis' Experience Growing Up With CLOVES Syndrome 10/28/2021

Lindsay Passodelis' Experience Growing Up With CLOVES Syndrome Episode 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. However, they misdiagnosed her as having Proteus Syndrome. Once she was finally correctly diagnosed, she was really relieved. Lindsay talks about her experience with CLOVES growing up. She discussed complications, difficulty in daily life with CLOVES, coping, and medication trials. Links: 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/index/show/fubarpod/id/20591489

Lia McCabe's Experience Raising Two Daughters With Autism 10/21/2021

Journaling For Mindfulness With Guest Josephine Atluri 10/14/2021

Journaling For Mindfulness With Guest Josephine Atluri 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. Links: 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/index/show/fubarpod/id/20591453

Updates, Crises, and Overwhelm 10/07/2021

Executive Functioning Tips From ADHD Coaching With Dr. Norrine Russell 09/30/2021

Executive Functioning Tips From ADHD Coaching With Dr. Norrine Russell 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. Links: 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/index/show/fubarpod/id/19822766

Learning An Instrument When One Has Special Needs With Guest Delwyn McKenzie 09/23/2021

Learning An Instrument When One Has Special Needs With Guest Delwyn McKenzie 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. Links: 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/index/show/fubarpod/id/19822754

Promoting Reading In Children With Learning Disabilities With Guest Dr. Maria Cleary 09/16/2021

Promoting Reading In Children With Learning Disabilities With Guest Dr. Maria Cleary 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. Links: 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/index/show/fubarpod/id/19822742

Using Summer To Create An Amazing School Year With Guest Dr. Laura Reber 09/09/2021

Using Summer To Create An Amazing School Year With Guest Dr. Laura Reber 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. Links: 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/index/show/fubarpod/id/19822721

Bassie Shemtov's Experience Creating Inclusive Communities and Employment Opportunities 09/02/2021

Bassie Shemtov's Experience Creating Inclusive Communities and Employment Opportunities 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. Links: 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/index/show/fubarpod/id/19594544

Alexa Bigwarfe's Experience of Twin-To-Twin Transfusion, Infant Loss, and Transformation Through Writing 08/26/2021

Alexa Bigwarfe's Experience of Twin-To-Twin Transfusion, Infant Loss, and Transformation Through Writing 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. Links: 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/index/show/fubarpod/id/19562336

Raising a Child with STXBP1 With Guest Chloe Weber 08/19/2021

Raising a Child with STXBP1 With Guest Chloe Weber 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. Links: 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/index/show/fubarpod/id/19551554

Spinal Muscular Atrophy And ADHD With Guest Trudy Citovic 08/12/2021

Spinal Muscular Atrophy And ADHD With Guest Trudy Citovic 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. Links: 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/index/show/fubarpod/id/19497107

Raising A Micropreemie Who Uses A Feeding Tube With Guest Gaby Grinberg 08/05/2021

Raising A Micropreemie Who Uses A Feeding Tube With Guest Gaby Grinberg 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. Links: 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/index/show/fubarpod/id/19446746

Raising a Child With Spinal Muscular Atrophy With Guest Megan Fabrizi 07/29/2021

Raising a Child With Spinal Muscular Atrophy With Guest Megan Fabrizi 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: 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/index/show/fubarpod/id/19431614

Raising a Child With Multiple Complex Medical Conditions With Guest Tammy Flynn 07/22/2021

Raising a Child With Multiple Complex Medical Conditions With Guest Tammy Flynn 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. Links: 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/index/show/fubarpod/id/19414166

Dafne Wiswell's Story of Raising Children With Type 1 Diabetes and Ankylosing Spondylitis 07/15/2021

Dafne Wiswell's Story of Raising Children With Type 1 Diabetes and Ankylosing Spondylitis 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: 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/index/show/fubarpod/id/19392968

Raising a Child With Marfan Syndrome With Guest Allison Pullins 07/08/2021

Raising a Child With Marfan Syndrome With Guest Allison Pullins 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. Links: 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/index/show/fubarpod/id/19326959

Alternative Childcare Solutions With Guest Shannon Parola 07/01/2021

Alternative Childcare Solutions With Guest Shannon Parola 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: 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/index/show/fubarpod/id/19100117

Dawn Veselka's Story of Raising a Child With Mixed Connective Tissue Disease 06/24/2021

Dawn Veselka's Story of Raising a Child With Mixed Connective Tissue Disease 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. Links: 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/index/show/fubarpod/id/19091417

Thriving in the Midst of Chaos: Parenting With Special Needs Kids

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