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

Episode 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 subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org) Hosted by: Jessica Temple Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2022 Jessica Temple

Episode 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, 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 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 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 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. Behavior and Educational Solutions Blog Facebook LinkedIn Twitter DHHS 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 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 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 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 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: Meet The PROS Comic Book Understanding PROS Instagram Blog 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 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 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: The Mindfulness Journal For Parents Book Website Main Website Instagram Responding To Life 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! 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 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. Coaching Website Blog Email Facebook Instagram LinkedIn Links: Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check 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 help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org) Hosted by: Jessica Temple and Lewis Temple Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple

Episode 107: Promoting Reading In Children With Learning Disabilities With Guest Dr. Maria Cleary In this episode, Dr. Maria Cleary discusses reading literacy and and the importance of continuing to read throughout childhood. Her daughter was showing learning delays when she was young and was found to have left-brain hemiatrophy. Her daughter did well in special education classes in public school until middle school, when things started to change. She started to notice that things were different for her socially. She then went to a special education school, which her daughter loved. As she got older, there weren't any books that were at her reading level, and she stopped reading. Dr. Cleary searched for something, but couldn't find anything for her daughter. Reading is so important because a huge percentage of kids with learning disabilities drop out of school and many are unemployed. Reading affects their success as adults. There has been no improvement in any grade level in reading since 2017 in the USA. By the time you reach middle school, if you stop reading, the neurons that support reading start dying and you start losing your ability to read. Reading is the single factor that leads to life success. Readeezy Email 1 Email 2 Facebook Twitter Instagram Is The Bottom Falling Out For Readers Who Struggle The Most The Brain That Changes Itself The Brain's Way of Healing Links: Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check 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 help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org) Hosted by: Jessica Temple and Lewis Temple Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple

Episode 105: Bassie Shemtov's Experience Creating Inclusive Communities and Employment Opportunities In this episode, guest Bassie Shemtov discusses how to create friendship and inclusion in the community. She and her husband began their career by working in the addictions community. However, Bassie didn't feel as if they were offering everything they could. She reached out to the community, and the community recommended they offer support for teens. They started pairing teens with children with special needs, and the bonds started to become really strong between all involved. To continue to grow, they listened to what the families needed and started building for the needs of the families. As the kids and teens grew, they began to grow their adult services as well. They began to offer amazing vocational programs where the young adulys could gain skills and earn money. She recommends that all communities create spaces for inclusion and allow each child to uncover their true potential. Make sure each child has the opportunity to give and make a difference. Consider starting clubs or organizations that promote inclusion and create new inclusive opportunities. Friendship Circle Facebook Instagram Links: Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check 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 help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org) Hosted by: Jessica Temple and Lewis Temple Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple

Episode 103: Raising a Child with STXBP1 With Guest Chloe Weber In this we discuss rare genetic disorder called STXBP1. Guest Chloe Weber's son Remy has a rare genetic disorder called STXBP1. This condition affects syntax and binding protein. For these individuals, their bodies don't make enough of the protein,the protein is misfolded, and the proteins can affect the brain. The condition can cause delays, cognitive impairments, ataxia, apraxia, parkinsonian tremors, and epilepsy. Remy was referred to early intervention at 9 months, as he was not developing as expected, although Chloe first started seeing signs at 4 months. He was then referred to genetics and neurology. He was diagnosed with a genetic disorder at 2.5 years old. Although her son has a lot of impairments, Remy remains happy and in the moment, even during this therapies. His seizures started when he was 2 years old, around the time he was diagnosed. For treatments, they manage seizures, stress, insomnia, and any symptoms that arise. There is no cure. They have tried intense therapy programs, CBD, oxygen therapy, supplements, movement therapy, ozone therapy, hyperbaric therapy, neurofeedback, and floor time. Remy needs constant supervision, even at night, due to having nocturnal seizures. Chloe discusses all of the advocacy work she has had to do to help Remy, including advocating for him to be allowed to attend school. Remy was kicked out of school twice, causing them to have to move, and uproot her company and leave behind family and friends. When Remy was 3, there was an inclusion program that he was able to attend through the school system, with a lot of supports. As Remy got older, Chloe started getting phone calls to come pick up Remy because the school didn't want to deal with his behaviors. He is now in a great program in Colorado, although the paraprofessionals are mostly in charge of the children, rather than the special educator. For Chloe, she copes by being easier on herself, using positive self-talk, uses Fight Camp, being in nature, and using meditation. Remy's Revenge Radical Roots Herbs Email Brain Balance Program Family Hope Center Fight Camp NAPA intensive therapy Links: Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check 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 help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org) Hosted by: Jessica Temple and Lewis Temple Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple

Episode 101: Raising A Micropreemie Who Uses A Feeding Tube With Guest Gaby Grinberg In this episode, guest Gaby Grinberg discusses prematurity, NICU stays, and feeding journeys. Her daughter Lana Rose was born at 24 weeks gestation, weight 11 ounces. There was no initial sign that she would go into labor early, as her pregnancy was pretty normal. At the 20 week ultrasound, it was found that she had intrauterine growth restriction and reduced amniotic fluid. They completed numerous tests and exams to figure out what to do next. Starting at week 22, she started to feel unusual, with stomach pain, headaches, swelling, nausea, and shoulder pain, and was told that everything was ok. She was twice not diagnosed with preeclampsia and HELLP, even though that was what was occurring. She had been counseled to take Tylenol if she experienced pain, which she did. However, the Tylenol caused problems for HELLP, since she had been misdiagnosed. She began to get very bad chest tightness, and went right to the hospital, where she was immediately admitted. She remained in the hospital for a week before she was rushed for an emergency C-section. Lana Rose was immediately taken to the NICU and intubated. Complications included breathing difficulties, difficulty keeping her weight up, and a very small brain bleed. Lana Rose stayed in the NICU for 6 months before being discharged to home. She was discharged with a G-tube and on continuous oxygen. They were medically quarantined for several months afterward. After the C-section, Gaby was let go from her job. Therefore, they lost their health insurance and had to switch plans, and her husband had to work really long hours. They had to just keep pushing through. Coping was hard. Gaby ran out of breast milk, was not able to breast feed, and was not allowed to bottle feed Lana Rose. Lana Rose had horrible reflux, with food being pushed out of her tubing at every feeding, made worse by undiagnosed lactose intolerance. This led Gaby to finding breast milk for her daughter, as Lana Rose was losing weight and was being labeled as failure to thrive. She was also having horrible rashes and diarrhea from the formula. Due to oral trauma through intubation, Lana Rose refused to eat foods orally. They tried OT and PT and feeding therapy, but Lana Rose still refused. They changed the formula, but Lana Rose was still not gaining weight, since she was not getting food or nutrition in. After age 1, Lana Rose started using a blended diet in her g-tube, which helped her get better nutrition. Gaby experienced horrible postpartum depressed, PTSD, suicidality, and significant overeating. Talking with her husband helped reduced her suicidality. Gaby had to mourn the loss of her pregnancy, having a child with special needs, losing her job. Lana Rose currently has compromised lungs and gut issues, but is otherwise doing well. ProofPoint Marketing LinkedIn Ronald McDonald House March of Dimes Minnesota Neonatal Foundation Preeclampsia Foundation PreFeeding Skills Book Links: Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check 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 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