Podcast appearances and mentions of lewis temple

American abolitionist, blacksmith, inventor

  • 3PODCASTS
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Best podcasts about lewis temple

Latest podcast episodes about lewis temple

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

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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Betsy Stover's Experience With Medical Trauma

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

Play Episode Listen Later Dec 16, 2021 67:29


Episode 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 observing medical trauma in the day and age of COVID-19.  Links: Why Mommy Drinks Podcast Instagram Betsy's Instagram Illuminati Improv     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

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

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

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

Episode 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 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

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

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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Parenting Special Needs Kids While Being Chronically Ill

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

Play Episode Listen Later Nov 4, 2021 25:28


Episode 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 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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Lindsay Passodelis' Experience Growing Up With CLOVES Syndrome

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

Play Episode Listen Later Oct 28, 2021 33:36


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 Protea 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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Lia McCabe's Experience Raising Two Daughters With Autism

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

Play Episode Listen Later Oct 21, 2021 39:46


Episode 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 which now had to change. The diagnosis didn't hit as hard when they got the diagnosis for the second child, as the systems for helping were already in place. Both children have done speech therapy and occupational therapy and her oldest daughter did physical therapy as well, due to hypotonia. They are currently both in a preschool speech and language/social skills program.   Links: Embracing Neurodivergency with Jessica Eccles, MD AutismWish Embracing Autism Podcast Parents Place of Maryland Floor Time Therapy LISS Funds Facebook Page       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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Journaling For Mindfulness With Guest Josephine Atluri

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

Play Episode Listen Later Oct 14, 2021 58:26


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

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

Episode 110: Updates, Crises, and Overwhelm In this episode, Jessica gives updates on her life and the life of her family. She discusses updates on her health conditions and recent surgery, crazy stressors, and mental health difficulties that accompany autism. She discusses how hard it is to get good medical care and how impossible it is to get adequate care for children with special needs. Jessica lays out how she obtained help for Benji's mental health crisis in Virginia. Spoiler alert, it was haaaaaaard!     Links: Chronicles of Zazzles: Connective Tissue Issues The Bendy Twisty Zebra Bendy Wendy and The Almost Invisible Genetic Syndrome     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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Executive Functioning Tips From ADHD Coaching With Dr. Norrine Russell

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

Play Episode Listen Later Sep 30, 2021 51:15


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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Learning An Instrument When One Has Special Needs With Guest Delwyn McKenzie

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

Play Episode Listen Later Sep 23, 2021 54:39


Episode 108: Learning An Instrument When One Has Special Needs With Guest Delwyn McKenzie In this episode, Delwyn McKenzie discusses the usefulness of learning an instrument for children with special needs. She grew up playing instruments, and made sure her children learned instruments, too. Early on in her childhood, her daughter was diagnosed with dyslexia. She noticed that her daughter had more difficulty learning an instrument than her other children did. This led Delwyn re-evaluate her teaching strategies to be inclusive for all children.    To get your child involved in music, seek out group experiences. She recommends getting involved in singing and starting with a single stave rather than both treble and bass. When getting your child into learning an instrument, think about the style of teaching of the teacher and the style of learning of your child. Beware that playing by ear is helpful, but can make it harder to learn to read music later. Teach the child decoding skills before they learn to play an instrument. Kids can start learning to play an instrument as young as 4, although they may have difficulty learning to read music later on if they learn this way. Difficulties children might have include difficulty with finger dexterity, eye distractions, not looking at the music notes, and distractions in the room. Make sure not to push the child farther than they can manage. Playing music also improves confidence. Any type of performance, even in front of family or friends, can improve confidence. Accent Music School Suzuki Method 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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Promoting Reading In Children With Learning Disabilities With Guest Dr. Maria Cleary

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

Play Episode Listen Later Sep 16, 2021 53:34


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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Using Summer To Create An Amazing School Year With Guest Dr. Laura Reber

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

Play Episode Listen Later Sep 9, 2021 45:01


Episode 106: Using Summer To Create An Amazing School Year With Guest Dr. Laura Reber In this episode, guest Dr. Laura Reber discusses maximizing your summer to help your child with the school year. She discussed the importance of learning executive functioning skills. To help transition from school to summer, keep schedules similar (meals, sleep, activities), set expectations that the children are aware of, consider ESY, and ask the school what you can do at home to maintain skills over the summer. Keep working on literacy over the summer, in whatever way works for your child. She recommends doing reading and writing every day, continue working on IEP goals, read classic books, make a reading club with your child, starting book clubs with friends and neighbors, write with fun stimuli like stickers and shaving cream, pass notes with your child, and teach math by playing games outside with sidewalk chalk. To prepare to return for the fall, check in with the teacher about what the school year will look like and what that will bring, help your student prepare for the schedule or any changes, use social stories, and have your child reconnect with school friends. To help bolster executive functioning, have your child plan fieldtrips and plant a garden.  Progress Parade Awesome Resources ABC Mouse 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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Bassie Shemtov's Experience Creating Inclusive Communities and Employment Opportunities

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

Play Episode Listen Later Sep 2, 2021 36:43


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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Alexa Bigwarfe's Experience of Twin-To-Twin Transfusion, Infant Loss, and Transformation Through Writing

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

Play Episode Listen Later Aug 26, 2021 54:48


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. Write Publish Sell Chrysalis Press Purple Butterfly Press Kat Biggie Press PublishHer Podcast Sunshine After The Storm Women In Publishing Write Publish Sell Blog Ditch The Fear And Just Write It .Workshops Facebook Group The Birth Hour Now I Lay Me Down To Sleep Return To Zero Movie Dr. Kiley Hanish     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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Raising a Child with STXBP1 With Guest Chloe Weber

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

Play Episode Listen Later Aug 19, 2021 42:21


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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Spinal Muscular Atrophy And ADHD With Guest Trudy Citovic 

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

Play Episode Listen Later Aug 12, 2021 45:28


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.   Website Facebook Instagram Evrysdi Headspace App Himalayan Institute How to Talk so Little Kids Will Listen: A Survival Guide to Life with Children Ages 2-7 The Whole-Brain Child Workbook Attention Deficit Disorder: The Unfocused Mind in Children and Adults     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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Raising A Micropreemie Who Uses A Feeding Tube With Guest Gaby Grinberg

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

Play Episode Listen Later Aug 5, 2021 78:25


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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Raising a Child With Spinal Muscular Atrophy With Guest Megan Fabrizi

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

Play Episode Listen Later Jul 29, 2021 35:02


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.   Facebook Love for little Liam's Fight Cure SMA Zac's Play Day             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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Raising a Child With Marfan Syndrome With Guest Allison Pullins

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

Play Episode Listen Later Jul 8, 2021 61:25


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.     Strengths Finder Test Marfan Foundation Children's Program     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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Alternative Childcare Solutions With Guest Shannon Parola

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

Play Episode Listen Later Jul 1, 2021 47:01


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.   Instagram Website     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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Dawn Veselka's Story of Raising a Child With Mixed Connective Tissue Disease

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

Play Episode Listen Later Jun 24, 2021 70:53


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.   Chronic Warriors Collective 1 Chronic Warriors Collective 2 Body Check Journal LinkedIn Instagram Dawn Instagram Chronic Warriors Collective   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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Raising a Micropreemie With Autism With Guest Melissa Harris

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

Play Episode Listen Later Jun 10, 2021 59:43


Episode 93: Raising a Micropreemie With Autism With Guest Melissa Harris In this episode, we discuss a mother's experience raising a micropreemie. Melissa Harris has two children, one of whom was born at 24 weeks gestation. She found that she had a bincorniate uterus, and had to undergo several surgeries to fix the problem. While trying to become pregnant with her second, she experienced several miscarriages. She underwent several IUI's to become pregnant. She had frequent hormone shots to keep the pregnancy going. If there was any hint of a problem, she was placed on strict bed rest for 3 days. She was diagnosed with an “incompetent cervix” which was thought to be the cause of her son being born early. When she went into early labor, she was taken to the hospital, where she had to lay completely still until her son was born. She had to be tipped back 30 degrees as well. They found that the sac had already started to come out and she was contracting frequently. She was given magnesium to stop the contractions. She held on for 6 days before her son was finally born. She had little to do during that time, and passed the time by having visitors and watching shows. She felt very sick with migraines and from the magnesium. Due to her son being a micropreemie, she had to undergo a c-section to have her son. After her son was born, he was taken right to the NICU, where he stayed for 95 days. He required oxygen, two surgeries, had a lot of apneas and bradycardia, his kidneys stopped working, and was found to have retinopathy. Otherwise, he had a relatively calm NICU stay. He had respiratory therapy and occupational therapy for head shape and head positioning. She had numerous complications herself during the first month, including a bad uterine infection. During the NICU stay, she hyperfocused on making sure that everything was ok and she didn't give herself time to process and cope. She struggled to balance care for her daughter and her son. The surgeries were overwhelming for Melissa to deal with. Once her son arrived home, the family was not allowed to leave their house for 6 months. She had to quit her job because they wanted her to come back to work and she was not allowed to leave the house. When her son was 2 years old, he was diagnosed with autism. He was diagnosed quickly and tried lots of different types of therapy. She copes with the busyness of life by writing. One Pound Twelve Ounces   Website Facebook Instagram Twitter Preemie primer book Autism Self Advocacy Network Twitter Link     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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Sensory Processing Disorder With Guest Candice Curtis

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

Play Episode Listen Later Jun 3, 2021 54:54


Episode 92: Sensory Processing Disorder With Guest Candice Curtis In this episode, we discuss sensory processing disorder, meltdowns, and making it all work. Guest Candice Curtis’s, OT, oldest son is autistic. Throughout her training, she began to gravitate toward occupational therapy and sensory processing disorder. There are 8 different sensory systems. Our brains have to organize all of the sensory inputs, decide if it is important or not important, and make all of it available for us to use when we are trying to do different activities and tasks. A disorder happens when our brain can’t do that effectively or easily and it impacts one’s ability to be able to participate in activities. Try to see things through the mind of your child. This will help you figure out what to do to help your child. Her biggest recommendation for sensory strategies is to get your children outside in nature more often. Nature has a huge regulating quality, as it is slower and calmer. Set up a playroom or play areas in your house. Ideas for it include a beanbag chair, swing, trampoline, rocking chair, weighted blankets, and/or lycra blankets. Take your child’s lead to play. Slow down and take your time. Play with them and interact with them. Join in with whatever they are doing. Use rhythmic vestibular activities. During COVID, Candice decided to homeschool her children. She needed to get better at self-care, step back, give herself grace, meal plan, delegate where she could, omit tasks when she could, give herself more credit for all the tasks that she did, think about progress over perfection, write down her routines and do what she was also ready doing but in a different way to make things more efficient, use music and headphones for her son, start her son’s day with sensory strategies, listen to meditations at night, use sensory strategies right before bed, schedule some time buffers into her time, and schedule time in just to sit and exist with her children. For self-care, she recommends shifting your perspective, examining your self-talk, creating a joy list, making an effort to make joy moments part of your every day, paying attention to self-talk, joining book clubs, planning out your week ahead and blocking everything out, and figuring out what to prioritize or simplify. A meltdown occurs when the child is way too overwhelmed. Practice strategies with the child when they are calm, so they have the skills when they need them. Be proactive and use sensory strategies with the child throughout the day. Keep in mind that they are reacting to stress and they can’t help it. It is your job is to keep them calm, find out what could have caused the meltdown, and figure out how to help them through it. Instagram Website Facebook The Autism and Sensory Parenting Podcast Sensory Integration and The Child Balanced and Barefoot     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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
The Science Of Mindfulness, Self-Compassion, The Joy of Living, and Positive Psychology, With Guest Dr. Rabia Subhani

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

Play Episode Listen Later May 27, 2021 48:39


Episode 91: The Science Of Mindfulness, Self-Compassion, The Joy of Living, and Positive Psychology, With Guest Dr. Rabia Subhani Today, we discuss mindfulness, self-compassion, the joy of living, and positive psychology. Guest Dr. Rabia Subhani trained and worked as a pediatric neuropsychologist. However, after she had a child with autism, she found a different path and started working in the area of mindfulness. She found that when she changed her reactions and used mindfulness practices herself, her son’s behaviors changed. Mindfulness is bringing your attention to the present moment with a loving, nonjudgmental awareness. Mindfulness is helpful for neurodiverse children, as it can help with sensory overload, overwhelm, emotional overwhelm, improving focus, calming down, emotional regulation, reducing stress, coming back to the present moment, and managing anxiety. If you help the child practice regularly, then it becomes routine for the child to use these strategies when stressed. Mindfulness can make changes in the brain to help depression, chronic pain, anxiety, memory, monkey mind, and attention/concentration. Mindfulness can help children and parents. Mindfulness can be used at school when the child is stressed, without anyone else seeing or knowing what the child is doing. Strategies include mindful eating or drinking, breathing exercises (including using an expanding and collapsing sphere to demonstrate the breath), 5-5-5 breathing, using cues to remind the child to take deep breaths, sitting meditation, bring attention back to their breath, the raisin exercise, brush teeth or shower mindfully, mindful movements (such as yoga), and modeling mindfulness behaviors for your children. Try to build these practices into a routine. Start off small. Self-compassion is giving yourself the same level of caring and compassion that you would give to someone else, with the intention and motivation to alleviate your suffering. Think about how you would treat someone else in your situation. Treat yourself like you would treat your best friend. If you don’t replenish, it leads to overwhelm and stress. Without self-compassion, it leads to shame, depression, anxiety, overwhelmed, and poor self-image. With more self-compassion, people engage in more exercise, eating well, going to the doctor, and have more optimism, life satisfaction, happiness, and better physical health. Parents can gain self-compassion by soothing touch (giving yourself a hug), doing things that make you feel better (warm bath, massage, drinking a cup of tea, going out in nature), self-compassion meditation, and a self-compassion break (have mindfulness that this is a moment of suffering, shared humanity vs isolation, and self-kindness). The joy of living is about choosing to live each moment with love, joy and gratitude and finding that joy. You are constantly finding new ways to get excited and everything makes you happy. You are consciously living to be optimistic. D what feels aligned with your heart, soul, and mind. Do what feels good to you. Positive psychology can increase joy of living, including savoring and gratitude. Savoring is noticing and appreciating the positive things in life, and letting them linger, the mindful experience of pleasure. Gratitude is recognizing, acknowledging, and being grateful for the good things in life.   Website Giveaway Quiz Facebook Instagram Linkedin Via Institute on Character The Mindful Self-Compassion Program Self-Compassion Resources Self-Compassion Meditations 1 Self-Compassion Meditations 2 Guided Meditations The Spoonie Struggle 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 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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Successfully Navigating College and Employment With Autism, Part 3

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

Play Episode Listen Later May 20, 2021 52:06


Episode 90: Successfully Navigating College With Autism, Part 3 To help with the transition to college, work on independence at home, bit by bit, select the goal with the student and start with the easiest one, rather than the hardest or most importance, then build up from there. Incorporate a reward system into the mix. It is helpful to help the child gain independence in communication with the teacher and have the student ask for the help and supports, especially starting in high school. Same thing with doctor appointments. Have the student schedule their own well visit. If they aren’t comfortable with it or can’t do it, work on self-awareness, anxiety, and social skills that are preventing this from happening. Know that in college, writing and written expression are huge. If a student struggles with written expression, college will be difficult. It is helpful to figure out in high school why they might have trouble and to see what can be done to help, if possible. If there is a subject that the student hates, see if there is a way that they can engage as minimally as possible, but in a way that they will get by in the college courses they need to take. Another big issue is the ability to include oneself. Students need to find ways to make themselves part of communities in college. Without socialization, depression can occur. Create or find ways to do this in high school. Practice having conversations and introducing yourself. Keep in mind that once your child is 18, the college does not have to speak with parents unless the student signs a release. Agree as a family beforehand about the level of involvement of the parent in the college education and have the student sign a release right off the bat. Then develop plans to fade out parent involvement and support and empower students to be their own supports over time. This should start in the high school years. Let the student know ahead of time that parents will start to fade out.   When it comes to employment planning, parents often have great ideas to create or carve out jobs for their children. It is helpful to identify career interests and skills that need to be built, in order to help the student be extra prepared for employment after college. Employment doesn’t always go well because the traditional interviewing and hiring process is a poor fit. The interview process is heavy on social engagement, social nuances, fast rapport building and social communication, navigating small talk and chit chat, and navigating questions about strength and weaknesses. Experience-based/task-based interviews are a better fit. Other things to help with job-finding include finding a career mentor, making sure the students accrue some sort of vocational experience in high school and college, finding jobs that give students an opportunity to practice basic work skills to start off, have them use their school career center to identify opportunities, and connect to vocational rehabilitation services.     Links: Emory Autism Center Education and Transition Services The College Autism Network NASPA  College Autism Summit College Autism Spectrum Frist Center For Autism and Innovation at Vanderbilt     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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Successfully Navigating College With Autism, Part 2

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

Play Episode Listen Later May 13, 2021 89:50


Episode 89: Successfully Navigating College With Autism, Part 2 In this episode, we continue our discussion of  everything college for teens and young adults with autism. Guest Dr. Matt Segall discusses how to decide on the type of college that is right for the teen with autism. When deciding on the type of college to choose, pay the most attention to social maturity of the teen, executive functioning challenges and independence in using strategies to support academics, self-advocacy ability, and the reason for going to college. If a teen has difficult with these, a 4 year college, at least to start, may not be the best choice, or taking a slow approach to school may be beneficial. For these individuals, Dr. Segall recommends a 2 year Associate’s degree option, perhaps transitioning into a 4 year college afterward. For those who are a hands-on or an experiential learner, technical school might be a great option. It can be helpful to start specializing in that area in the high school years as well. The likelihood of those who go to a technical school getting a job after college is much much higher than those who go the traditional college route. Online learning is best for someone who is overwhelmed by learning in person, but has a strong skillset of independent learning and self-management and executive functioning. Make sure to match the educational setting to the person’s life goals.   The four pillars of important support in college include care coordination, skill building, within campus inclusion and capacity building, and vocational development. When looking to see if the school is a good fit for your child, consider the living situation, and examine the distance from home, the requirements to live on campus, classroom size, student support systems, academic coaching, mental health support, care coordination/case management, assistance with skill building, mentors, assistance with executive functioning, independent living skills, and the community of students. When looking for a college, reach out to the autism support networks there and meet with them, get a sense of how the student will register with the office of disabilities, inquire about autism supports on campus, look at academic rigor of the school, think about if the student has nailed down their academic career path, examine the community of students. Don’t start looking into college and doing the aforementioned in the spring right before graduation. Start thinking of these things in the 10th grade year. Think about the level of independence of the student academically, build up independence skills and task management skills, build executive functioning  skills, and engage in person-centered planning to help them identify what they want in a community.   Links: Emory Autism Center Education and Transition Services The Parent’s Guide to College for Students on the Autism Spectrum The College Autism Network NASPA College Autism Summit Eric W. Carter     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

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Successfully Navigating College With Autism, Part 1

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

Play Episode Listen Later May 6, 2021 63:18


Episode 88: Successfully Navigating College With Autism, Part 1 In this episode, we discuss everything college for teens and young adults with autism. Guest Dr. Matt Segall discusses that nowadays, many teens with autism are going to college. However, a low number of them graduates. Those who do graduate tend to have a higher academic ability, good executive functioning skills in the areas of self-management and completing and turning in work, resilience, and the creation of a support team around the individual. In those who do not graduate, often college was not a good choice of postsecondary education or it was the wrong college for them. Choosing to go to college must be an active choice. Passively going to college without reason or supports can lead to anxiety, depression, and shutting down.   Some challenges to success in college include reduced executive functioning, difficulty with social engagement, anxiety, and developmental delays. In college, you need an active and engaged initiation where you use self-advocacy to obtain a support system and accommodations you might need. Creating a strong social network with supports is crucial to success in college. Dr. Segall recommends ways to be more successful in college including accommodations, strong self-advocacy, strong social support network, possibly staying in high school longer, taking the “slow approach” to higher education, and/or dual enrollment in high school and college during the 5th year of high school. It can be helpful for the teen to practice going to their professor/teacher and disclosing their diagnosis and requesting accommodations. They should also practice using office hours, checking in with the professor occasionally, using peer mentors, and using visual schedules and visual supports. It is helpful to pull on self-advocacy and teach the teen helpful strategies, so supports will eventually be successfully faded out. Self-advocacy is key. Self-advocacy is about autonomy of choice and reaching out to get the things you need. In college, the teen can go to the career center to find information about resources, careers or internships, ask for accommodations at the college, speak up for themselves in small groups academic projects, and reach out to the counseling center and request an appointment. Meet with the office of disability services at the school about accommodations. Disclosure and advocacy can be two different things. Disclosure can be a powerful tool that one can use at your disposal. The ideal college situation is an inclusive college campus where they understand the universal design for learning, educate faculty staff and students about autism, and the faculty reaches out to the students if they notice someone has features of autism. There are 100 colleges nation-wide who have college autism support programs. The provide academic accommodation supports, academic coaching, skill building and teaching skills, care coordination, tutoring, mentoring, life skills building, and preparation for employment. However, these come at a higher monetary cost.   Start planning for college in 8th or 9th grade. Think about what accommodations that are benefitting the student at that point that will be helpful in a college environment, and make sure the student is aware of what those things are. Include the student in the IEP process. Fade out what you can when you can. As they approach graduation, get a new psychoeducational evaluation and include the relevant tools, resources, accommodations, modifications. Use this as documentation of needs for the office of disabilities at the college.           Links: Emory Autism Center Education and Transition Services The College Autism Network     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

The Spoonie Struggle
Lewis Temple's story with Ehlers Danlos Syndrome

The Spoonie Struggle

Play Episode Listen Later Apr 21, 2021 35:57


Episode 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 listen, and trying to work. To advocate for himself, he is careful about his wording in appointments with doctors. His life is impacted by not being able to look up or down, and having to take life slower. To cope, he realizes that pain can be changing and fleeting, creates his own meaning in life, plays video games, learns new things, and reads. He shares his fears about the future and his goals for the future. He recommends advocating for yourself by being mindful about how you communicate with your doctor. Links: The Spoonie Struggle Symptom Tracking Journal Hardback The Spoonie Struggle Symptom Tracking Journal Paperback The Ehlers Danlos Society 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 Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Special Education Law During Covid With Guest Catherine Michael

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

Play Episode Listen Later Jan 28, 2021 56:17


Episode 74: Special Education Law During Covid With Guest Catherine Michael   In this episode, we discuss special education law during COVID. Guest Catherine Michael, a special education lawyer, discusses that IEPs and services should not look different during COVID and that all services still need to be provided, although they may be offered in a slightly different format. Cases that have been coming up in 2020 relate to the child not being able to use distance learning due to cognitive impairments or not being able to use a mask due to health or cognitive issues. For those children, schools are looking into therapeutic day placements or ABA facilities. For children who are missing a lot of school, they are also trying to use google hangouts or zoom meetings. To pay for other placements, schools can use their high cost funds, which is used for alternative placements. Some alternative placements are hiring more staff to accommodate these children and may even be offering a discounted rate. Some schools are having children work with behavior techs to assist with the online schooling. If the children are not able to access online education and the schools refuse an alternate placement, the schools have to figure out a way to provide education. The IEP should still be fully implemented. If it is not, you can file a complaint with your state, a due process complaint. All therapies and services should still occur at the stated frequency in the IEP. Some school districts have started hiring people to come to the child’s home to provide the needed services. If the child has not been receiving the related services, the child may be owed compensatory education. Parents need to document what the child is not receiving and also any regressions.  If a parent feels that the child is not being provided with the education he/she is required during COVID, a parent can write a letter to the school, do mediation, or file for due process.     The parent still has the right to have an evaluation for their child. If the parent doesn’t think the evaluation was comprehensive, the parent can request an independent evaluation. However, schools may ask to perform another evaluation on their own first.   She noted that although schools could always use more money, the problem is more poor allocation of money to the needed resources. She recommends that schools look at good charter schools as a model of ways to properly use resources. Connell Michael Kerr The Exceptional Parent’s Guide to Special Education Law and Advocacy Parental Guidance Podcast Lindamood Bell     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 and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Special Education Services Across The World With Guest Jodi Samuels

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

Play Episode Listen Later Jan 21, 2021 73:41


Episode 73: Special Education Services Across The World With Guest Jodi Samuels In this episode, we discuss schooling across two continents for children with special needs. Jodi Samuel’s daughter Caila first began schooling in NYC schools, where she was provided with extensive services through the state. She was lucky in that all of her therapies were provided to her during the school day. She attended school in an open-minded community and accepting school. When Caila was 6, Jodi and her husband debated whether to move to NY suburbs vs Israel. In the end, they chose to move to Israel. They had very little time to pack their bags and move to Israel. Jodi did not speak Hebrew, and teachers did not speak English. To communicate, she used the assistance of Google Translate, friends, neighbors, and her older children. Meetings with teachers and administrators was challenging. Since her daughter started school in Israel at such a young age, they immediately had to start looking for school for the following year. After the first year, finding schooling was challenging, because the first school they tried was a poor fit. Jodi had to go through 11 schools before one school finally accepted Caila. Jodi plans to bring in a consultant when looking for high schools for Caila to help her find choices and figure out what their rights are. School has become more difficult due to speech, cognitive, and language delay, more homework, and learning a new language. As she gets older, Caila spends less time in an inclusion class, depending on where she is educationally with that subject.   In Israel, Caila has an IEP, but does not receive many services in school. She has an in-school shadow 25 hours per week. Her private insurance pays for her other therapies, as schools in Israel tend not to believe in additional services within the school system unless a child is in a self-contained classroom. Due to this, Jodi had to become the CEO of Caila’s intervention team. She had to do a lot more driving Caila to therapies and she had to begin guiding everyone on Caila’s team.   Although Caila adjusted very quickly, socialization has been more difficult for Caila due to the way families and neighborhoods are set up. Although there has been no bullying, she has been excluded by a lot of peers.   Jodi has found that resources are much more limited in Israel. Finding therapies for Caila was easier than finding schooling, since they had already been using services from those places before they even moved to Israel. She found that social support networks have been key for learning valuable information about finding services for her daughter. She also discovered that natural born Israelis felt that people not from there expect too much and complain a lot and so therapists and staff tend not to communicate with parents much about the children.   To cope with being the coordinator of everything for Caila, Jodi recommends coffee and red wine. Find what gives you a boost and an outlet. She noted that creating a support network is mandatory, including a local, someone who speaks the language, other parents, and pioneers in that area. Don’t be scared to ask people for help. Utilize services from advocacy groups. Search for and use all the resources you can find. Use social media for your benefit. Use concierge services upon moving to a new country. Use consultants when you need them. Guest Links: Website  Facebook  Instagram  LinkedIn  Chutzpah, Wisdom, and Wine: The Journey of an Unstoppable Woman    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 and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Free and Appropriate Public Education With Guest Dr. Steve Jacobson

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

Play Episode Listen Later Jan 14, 2021 74:09


Episode 72: Free and Appropriate Public Education With Guest Dr. Steve Jacobson In this episode, we discuss evaluations, FAPE, LRE, nonpublic placements, and giftedness. Guest Dr. Steve Jacobson suggests that if a parent feels something is wrong in the schools, they should talk to the teachers, then request a comprehensive evaluation in writing. Then the district gives something to the parents called a permission to evaluate. Even if a child has gotten an evaluation outside of the district, the school systems still have to do their own evaluation. The district will have 60 calendar days to complete the evaluation. If a district refuses to do an evaluation, let them know that you are thinking of talking to an attorney or plan on doing mediation and then they are more likely to do an evaluation. It is most appropriate to ask for a private evaluation if you completely disagree with the school evaluation. If you already got an outside evaluation, all the school has to do is “consider it.” To increase your chances of it being met with an open mind by the school, let the school know all the outside services your child is receiving, get input from the teachers in some way during the outside evaluation, have your evaluator do an observation in the classroom, have the evaluator be a certified school psychologist, and make sure the evaluator is licensed in the state in which the child is attending school.   If the reports from the school vs the private evaluator are very discrepant and you and the school cannot come to an agreement, you can seek out an attorney, seek mediation, seek the assistance of an advocate, or do a due process hearing. If you ask a district for an outside evaluation, if they say no, they have to request a hearing to defend their decision. Sometimes, the district may agree to pay part of the evaluation or will require you to pick certain evaluators. You can ask to be paid ahead of time or after the fact.   FAPE: Free and appropriate public education. FAPE  grants special education students rights that typical students do not have. These student are entitled to a certain level of quality of education, although appropriate doesn’t necessarily mean best. The placement has to be reasonably calculated to provide the child with benefit and meet the child’s needs. If a parent totally disagrees with the placement, the outcome depends on the reason for the disagreement. First, try to resolve it amicably if possible, and if that doesn’t work, one can do mediation or due process. LRE: Least restrictive environment. Children with disabilities need to be educated with the max extent possible with non-disabled children. This varies by child. The max extent possible is often an inclusion classroom.   Nonpublic placement occurs when a school district is unable to provide the services needed for the child or unable to find an appropriate school system placement that meets the needs of the child of if a child is not progressing in the school system. To have your child enrolled in a nonpublic school, most hearing officers will not order a specific private school. If a school had provided the child with inappropriate education for a lengthy amount of time, the child will be owed compensatory education, which may result in nonpublic placement payment. Otherwise, a parent can start their child in a private school with their own money and the public school may reimburse the parents if the hearing officer agrees that the child needs a nonpublic placement. Some states do not recognize giftedness. In the states that do, the children are still entitled to FAPE, and the district has to find them and find appropriate placements for the child. An IEP may still be required and must be individualized to that child. Sometimes there is a pullout gifted program. However,  independent evaluations will not be paid for or reimbursed. There is also no tuition reimbursement. Moreover, there is also reimbursement for attorney fees for giftedness. The level of quality of a gifted education may vary. School districts have different ways of evaluating giftedness, and a child may not be considered gifted in each district. Links:  The Education Lawyers         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 and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Online Speech Therapy With Guest Leanne Sherred

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

Play Episode Listen Later Jan 7, 2021 46:40


Episode 71: Online Speech Therapy With Guest Leanne Sherred In this episode, we discuss speech therapy in times of COVID for kiddos who are verbal or nonverbal. Guest Leanne Sherred created Expressable, an online speech therapy company, to provide easier access to speech therapy. Speech therapy online is very similar to in-person speech therapy, but can also use additional multimedia and more parent involvement. Online therapy must be decided on an individual basis, as it might be tougher to work on swallowing (to reduce risk of choking and aspiration), or assist children who have a lot of sensory-based needs and have difficulty engaging in sessions. Pros as outlined by Leanne: Very similar to other speech visits, can be done at home on the schedule that works for them, research has supported for teletherapy, therapists can use other media things (screen share, draw on screen, videos, pictures, animations), sessions online are engaging for kids, also uses a parent as a facilitator to help keep the kid engaged, gets parents more involved in treatment, the therapist can provide more parent coaching, the convenience factor, obtain more consistent therapies, and greater ease of carrying over the skills to home and school.   Cons: May not be a good fit for every child, the family might have limited internet or device access.   For kids to get the most out of the session, parents should be really present during the sessions, have a good understanding of the goals for their child, should speak a lot with their child, and should tell the therapist where they need more help in assisting their child with language. To help in daily life, model, narrate what you see, use consistency, surround the child with speech and language, pause and give them a chance to speak, and be patient.   For children who are nonverbal or have not yet acquired language, online speech therapy is doable, but parents would need to become more involved in sessions. They may also use AAC devices or PECS or a switch.   In therapies, therapists will make a plan to include language and practice throughout the day, potentially use alternative communication modalities, will work parallel with a screen or story, ask/answer questions, work with parents to provide them cues for what to do to work with their kids, and teach the child how to use alternative communication systems if they are needed. Guest Links: Blog Website Email YouTube channel     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 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Living With Auditory Processing Disorder

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

Play Episode Listen Later Dec 30, 2020 19:28


Bonus Episode: Living With Auditory Processing Disorder In this episode, Lewis discusses his experience with auditory processing disorder. Lewis was diagnosed with APD by an audiologist after a battery of tests. As a child, he would have difficulty understanding what his friends were saying to him, but he never knew why. In school, he had difficulty understanding what teachers were explaining. He performed better in classes that were more visually oriented. He had more difficulty understanding people in loud areas, and concerts were physically painful for his ears. At home, he misheard what his family was saying, on a regular basis. There was often miscommunication. Currently, APD continues to be challenging for him. At work, he has difficulty comprehending information provided to him at meetings, especially when there are background noises. At doctor appointments, he sometimes misses information or mixes up the information. When he talks to people on the phone, voices sound like gibberish. It is especially challenging when trying to understand his young children speaking, often in whining voices or talking over one another. Wearing headphones in noisy situations has really helped. Asking people to slow down also helps.     Email us if you have any questions or ideas! 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 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Auditory Processing Disorder With Guest Lilach Saperstein

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

Play Episode Listen Later Dec 28, 2020 62:24


Episode 70: Auditory Processing Disorder With Guest Dr. Lilach Saperstein In this episode, we discuss the ins and outs of auditory processing disorder (APD). Guest Dr. Lilach Saperstein noted that APD occurs when the brain can’t properly pick out what is important to hear vs what is noise. APD is more likely to occur in children that have other disorders, such as ADHD or autism, although another possible contributing factor is chronic ear infections between 0-3 years of age. Diagnosis is typically only made starting at age 7, but can be screened starting at age 5.   APD presents differently in each child. Common signs include inattention, not answering to their name, constantly saying “what,” “I didn’t hear you,” “did you call me?,” needing to repeat things to the child, the child not being engaged to sounds around them when it is noisy or busy but attends when it is quiet, and the child experiencing frustration in communicating. Before being diagnosed with APD, one must have had ruled out hearing difficulties and ADHD. It is strongly recommended that a child also have a psychoeducational evaluation, speech and language evaluation, and a medical checkup, and the audiologist will also gather information from the teacher and parent. Although only audiologists can diagnose APD, speech therapists most typically do the treatment. Dr. Saperstein provided the following tips for managing APD: Tips: Visual cues along with auditory cues             Visual schedules for routines             One direction at a time             Repeat information back verbatim             FM system in the classroom (mic to kid’s ear)             Learning an instrument             Preferential seating near front of the room, near the teacher             Pre-teaching key words of the lesson             Chunking information             Play Simon says (start slow, then speed up instructions)             Play chicken dance that gets faster and faster             Copy the beat             Written communication at school and work             Accommodations in the office             Listening to audio books and podcasts (slow down or speed up playback speed)         Guest Links: All About Audiology All About Audiology Guide Instagram Facebook Khan Academy Kids Teachers Pay Teachers   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 2020 Jessica and Lewis Temple                

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

Episode 69: Our Crises of Faith In this episode, Jessica and Lewis discuss their own crises of faith. Jessica’s faith varied throughout her lifetime but was strong before having children. After both kids were diagnosed with special needs, the Jewish community in which she lives, her son was kicked out of a Jewish day school (and also abused him), neglected at another Jewish day school, and the community excluded her family. She started to resent the quantity of holidays that she was unable to participate in, and the huge food restrictions that her children were required to follow, when they were already very picky eaters. After seeing the discrimination and huge lack of support, she lost her faith in her religion.   Lewis tried out different religions growing up before he decided on Judaism. He threw himself headfirst into the religion and became very observant. He felt disconcerted after one Jewish day school neglected his son, and again after the other one kicked his son out for having autism. He later saw how LGBT folks were treated in the Jewish community and using bad terms for them in the scriptures and it being outright forbidden. He started to do more research and didn’t like what he found. It was the last straw, because his deep down beliefs didn’t match up with the scriptures. This led to a lot of resentment toward religion and he lost his faith.     Email us if you have any questions or ideas! 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 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Living An Extraordinary Life With Guest Jodi Samuels

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

Play Episode Listen Later Dec 17, 2020 65:15


Episode 68: Living An Extraordinary Life With Guest Jodi Samuels In this episode, we discuss living an extraordinary life and experiencing crises of faith. Guest Jodi Samuels’ youngest daughter Caila was born with Downs Syndrome. Although she had had testing ahead of time, it was never suggestive of Downs Syndrome, so the diagnosis came as a surprise. Jodi immediately jumped into activism. Once Caila was 2 years old, Jodi decided to place her in school at the same place her older symptoms were attending. However, her family was emphatically told Caila was not allowed to attend there. Jodi began to have community forums and reach out to the media, which led her to find her public voice. She wanted to make sure that others received a positive message about special needs. She remained positive and proactive. Jodi took the approach of treating Caila as if she is neurotypical and Jodi has high expectations for her daughter. A lot of friends and family are accepting and accommodating of Caila. Jodi wanted to have her daughter in an inclusion classroom. However, most schools blindly said no. There was a lot of discrimination, even within the religious community. In sharing her experience, she found that a lot of parents went through similar experiences. Jodi has gone out of her way to live an extraordinary life even while raising a child with special needs. She felt she had to choose between victim and victor, and chose to be the victor and live an extraordinary life. She defines this as living the life you want to and choose to live. She discourages living in complacency and mediocrity. The first step to thriving through a crisis is to believe that we can cope. Next, we need support. It is important to talk about what we are going through. Then put on a positive attitude and start taking steps. Being a supermom is having work, community, and family. She recommends making a to-do list and prioritizing things that have to get done. She also recommends scheduling in office time, home time, personal time, and family time. Delegating is really important, and don’t forget that we are allowed to say no. She also recommends coffee/caffeine and wine. Balance is key. Throughout adulthood and parenting, Jodi has experienced a crisis of faith, especially when her daughter was not allowed to attend Jewish day schools. Her husband says “don’t judge Judaism by the Jews, judge it by the Torah.” She found her faith when she found more accepting communities. Finding role models that she respected was helpful. Guest Links: Website  Facebook  Instagram  LinkedIn  Chutzpah, Wisdom, and Wine: The Journey of an Unstoppable Woman  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 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Bullying Prevention With Guest Dr. Claire Thomas-Duckwitz

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

Play Episode Listen Later Dec 10, 2020 94:45


Episode 67: Bullying Prevention With Guest Dr. Claire Thomas-Duckwitz In this episode, we discuss eliminating bullying against students with special needs. Guest Dr. Claire Thomas-Duckwitz defines bullying as being mean on purpose, imbalance of power, being one-sided, and happening over and over again. An enormous percentage of children with special needs reported being bullied in school, so it is even more important to have a bullying prevention program in schools. Bullying prevention programs should include weekly instruction around concepts, embedding those concepts into the classroom discussions, skill building, good/effective playground supervision, noticing good behaviors, communication between paraprofessionals and teachers, parent training and meetings, the school spending time on positive values, and  having positive relationships with the students.   Parent education should include educating parents on what bullying is, sending home letters to parents of topics to think about, and training parents on how to be advocates for your kids. It is important that teachers get training on how to respond to bullying. Training kids how to be specific about their words, choosing the right moment to report it, training kids how to be upstanders, explaining to kids what the special needs are/mean and why certain behaviors occur, ensuring that there is no opportunity for retaliation, and adequate supervision of children in the halls are all key. Parents should use authoritative parenting and provide their children with warmth. Schools should have a clear written bullying policy, have an evidence based bullying curriculum, talk about what it means to be an upstander, have advocacy goals should be included in the IEP, teach what bullying is and isn’t and use precise language, teach children how to report mean behaviors, and teach them who to report bullying to. After the child has been bullied, validate their feelings, teach the kids to report the bullying, report the bullying yourself, and/or role play with your child what to do. Links: Links : A Little Cerebral Podcast Facebook Twitter Website  Bully Prevention in PBIS Olweus Program Second Step Facing History and Ourselves       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 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Fetal Alcohol Spectrum Disorder With Guest Natalie Vecchione

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

Play Episode Listen Later Dec 3, 2020 58:35


Episode 66: Fetal Alcohol Spectrum Disorder With Guest Natalie Vecchione   In this episode, we discuss the ins and outs of Fetal Alcohol Spectrum Disorder. Guest Natalie Vecchione has an adopted son with FASD. Although it was not diagnosed at the time, he began showing signs of FASD very early on. Symptoms worsened around age 2, with symptoms such as additional sensory needs, attachment difficulties, speech regressions, delayed milestones, and sleep impairments. He started early intervention at an early age, but as he grew older, he no longer qualified for services. He started falling behind his peers at school. Her son has variable memory impairments, which change on a daily basis. As he grew, he also began exhibiting behavior difficulties, exacerbated by puberty. Finding a support group for parents of children with FASD was very helpful for Natalie. Natalie found that doctors never mentioned FASD unless Natalie did, making it difficult to eventually find a diagnosis for her son. Once she got a diagnosis, she began to look into trainings about FASD. She found that brain based or neurobehavioral approaches worked best and were most effective for her son. She found that mental health first aid training was incredibly helpful. Executive functioning of is one main cognitive areas that is impaired in those with FASD. This can affect their developmental age, which is often lower than their chronological age.   Natalie discusses that there are different diagnoses under the FASD umbrella, but it is a whole body disorder. With fetal alcohol syndrome, a child might have certain facial features, shorter stature, smaller head circumference, sensory and mobility issues, and other medical issues. FASD is often very underdiagnosed. Common FASD symptoms include dysmaturity as children get older, variable memory impairments, hyperactivity, executive dysfunction, having difficulty with abstract thinking, reading difficulty, math difficulty, difficulty predicting outcomes, sensory difficulty, slower processing speed (auditory or visual), impulsivity, reduced social skills, anxiety, self-harm, and low self-esteem. Symptoms can arise at any time during childhood. If parents see these signs in their children, parents should seek out an FASD clinic or a state or national FASD organization. For therapies, occupational and speech therapy tend to be most useful. Natalie also recommends that parents get neurobehavioral or brain based training.  Accommodations are key for children with FASD. It is key to focus on the strengths of that child. Accommodations could include visual and tactile cues, extra time, extra emotional support, extra support, minimizing florescent lights, and/or keeping directions short and simple. It is incredibly important to create supports for these children.   Links: Natalie’s Links: Website: "FASD Hope" Podcast (on Podbean, Spotify and most platforms) Instagram Facebook  Pinterest  Natalie Vecchione  fasdhope1@gmail.com or info@fasdhope.com   Helpful Resources: Homeschool Legal Defense Organization CDC information about FASD- FASD Book- "Trying Differently Rather Than Harder" by Diane Malbin, MSW FASD Organizations- Proof Alliance National Organization of FAS  Homeschooling with Special Needs- Facebook Groups  Special Needs Homeschooling   Special Needs Homeschool Homeschooling the FASD Way- A Global Community Blue Collar Homeschool, Special Needs Homeschooling Special Needs Homeschooling High School and Beyond   Websites For Homeschooling             Learn Differently Special Education Homeschool Homeschool.com Mental Health First Aid- Training in Neurobehavioral Approach to parenting / caring for a child with an FASD or Brain Based Diagnosis- The CDC offers fact sheets- Training Aubrey Page, FASD Educator & Trainer     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 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Mindful Mama Mindful Child With Guest Josephine Atluri

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

Play Episode Listen Later Nov 25, 2020 57:52


Episode 65: Mindful Mama Mindful Child With Guest Josephine Atluri In this episode, we discuss surviving quarantine with kids, while keeping your mind and relationships intact. Guest Josephine Atluri discusses tips to survive quarantine. She recommends giving yourself space and being flexible and kind to yourself. She suggests allowing yourself to feel your feelings. She reminds us that COVID is a marathon and not a sprint, and we can to cope differently than we initially did at the beginning. She highly recommends frequently utilizing breathing techniques, including box breathing, the ocean breath, or matching your inhale length to your exhale length, increasing by a second as often as you can. This helps change your moment from something negative to something positive. These are strategies that are great not only for parents, but also for kids of almost any age! For parents who don’t get breaks during the day, during online learning, it is helpful to get creative and find ways to find short breaks, whether to do breathing exercises, using an online meditation app, or practicing affirmations. Jessica recommends doodling or using watercolor pencils or other short creative activities. Quarantine has also been hard on marriage and relationships. To help strengthen relationships, Josephine recommends taking a date day/night/afternoon/hour and checking in about how each other’s days went, ideally once per week. Also, talking with friends, taking a few minutes alone, and doing mindfulness to tune into how you are feeling and also how your spouse is feeling. For mindfulness for parents, Josephine recommends breathing techniques, affirmations, gratitude practices, and a body scan. Josephine offers guided meditation on her website too (see below). When getting started with meditation, start with short sessions, tie it to an existing ritual, and be flexible and kind to yourself. To help your child engage in meditation, start modeling meditation, place importance of self-care for yourself, show them how you handle stress and overwhelm, make a gratitude journal, use affirmations, use chimes, follow audio guided meditations, engage in breathing exercises, do meditations with your children, and do walking meditations.     Links: Josephine’s Web The Mindful Mama Moments Instagram Responding to Life Podcast Headspace Calm   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 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Raising a Child With Down’s Syndrome Into Adulthood With Guest Yvonne Pierre

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

Play Episode Listen Later Nov 19, 2020 62:20


Episode 64: Raising a Child With Down’s Syndrome Into Adulthood With Guest Yvonne Pierre In this episode, we discuss raising a child with Down’s Syndrome into adulthood. Guest Yvonne Pierre’s youngest son, Zyon, was diagnosed with Down’s Syndrome shortly after he was born. He initially had digestive issues and the nurses went to evaluate him and suspected he had Downs Syndrome. This was confirmed later that day. Yvonne was initially devastated by the news, as she didn’t know anything about the condition. More than anything, she was wondering if her child was going to be ok. She is an open book, so she was open with her family and friends about her son’s condition. She also relied heavily on her faith and her love of her child. Everyone she told reacted in a different way. Some researched the conditions, some asked questions, and some reacted negatively. She has found life with her son a blessing. She looks at everything as life lessons, such as how is she supposed to grow from this. Zyon was born 5 weeks early and has a mild heart murmur, which seems to have resolved. Speech has been Zyon’s biggest challenge, although he still struggles with digestive and skin issues. Zyon has a high tolerance for pain, so Yvonne needs to be really aware in order to pick up his cues to see if he is in pain. His school experience has been varied and was dependent on the quality of the teachers. Due to teacher issues, Yvonne homeschooled Zyon for a year. Currently, Zyon has been transitioning to adulthood. He is wanting his privacy, starting to care what people think, and is starting to like girls. It has been challenging for Yvonne to know how to discuss dating and sex with her son. She has also been struggling to figure out how to discuss driving with him. She continues to work with her son on safety in the community. They are working on finding Zyon a job that maximizes his talents. Yvonne has experienced some isolation throughout parenthood, but she has made sure everyone in her family is included in the community, which has helped. For self-care, she meditates, eats well, exercises together as a family, and prays as a family. She also works on having a positive outlook, even when things get hard. She recommends networking with other parents in your community and getting involved. Links: Yvonne’s Website Instagram Facebook Twitter Special olympics Parent to parent   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 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Overcoming Special Needs Stigma with Guest Leah Moore

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

Play Episode Listen Later Nov 12, 2020 71:58


Episode 63: Overcoming Special Needs Stigma with Guest Leah Moore In this episode, we discuss self-care, coping, stigma, advocacy, and helpful teaching techniques that parents can use at home. Guest Leah Moore has 3 children with different needs. Her daughter Jordan was born with Cri Du Chat Syndrome. She began to lag behind developmentally, which led Leah to looking for a diagnosis for Jordan. Symptoms of this disorder can include a kitten-like cry, microcephaly, cognitive and developmental delays, hypotonia, require feeding tubes, and some children are unable to walk or talk. However, Jordan walks and talks but has some cognitive and social challenges. She also has epilepsy and some medical challenges. Due to her husband being a carrier for Cri Du Chat Syndrome, Leah did IVF, and ended up having twins. One of her twins, Austin, had hydrocephalus at birth, although he never required neurosurgery. He does have learning disabilities, but is doing well. Her other twin, Oliver, started developing some spots on his skin at one point. His doctors were concerned that he had leukemia, so he had numerous procedures and tests. He was later instead diagnosed with ITP, idiopathic thrombocytopenia. He is generally healthy,  but has a tendency to bleed more than other children would.   Leah found that she felt isolated during Jordan’s early years, as they were figuring out how to navigate the different needs. Leah also found it terrifying to manage all the needs at the same time. They learned to focus on the children as they were, and not focus on the appointments, and conditions, and paperwork that came with everything. She tries to just focus on who they are as people. When she tried to stop the sadness she was experiencing, she found that she squashed the joy, too. She wanted to remember that even in the worst time, there was still beautiful things happening every day. She found that reaching out to others and sharing her story was incredibly helpful for her. She uses writing as a huge outlet. She and her husband also take turns taking breaks. Keeping everything afloat is a challenge, but having a strong support system, starting psychotherapy, finding enjoyable hobbies, and relying on those tools when she needs them really help. She learned that she can’t be all things at all times. She struggled with finding her community, but she found them within social media, the Cri Du Chat community, and at conferences. She also connected with parents through her special education PTA and through her website. During crazy times, it can be helpful to control what can be controlled. Leah works hard on basic self-care, like dressing fully for the day or dressing up, which really helps to boost her mood. She noticed that any one thing doesn’t work for everyone. Each person is an individual. She noticed that finding tiny ways to care for herself works best. She works hard to be mindful during her day. Leah deals with stigma by educating others. She recommends reading books about differences and disabilities to help lessen stigma. Through teaching an adaptive theater class, Leah learned the following: Use structure and visual calendars. Make sure your child knows what his/her days look like. Be purposeful with your transitions. Be detailed about what will happen. Provide choice within structure. Have transitions look the same each time, when possible. Pause and notice. Notice what is working and when there is an opportunity for more learning. Yes and. Instead of focusing on “no,” say yes to the direction the child is leading you, within reason. Every single person has a voice. Each child has an opinion about something.   Links: Website Email Twitter  Instagram Wolf and Friends Email us if you have any questions or ideas! We are on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook and join our parent group! We also have a Facebook Page with updates about our podcast!   Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org) Hosted by: Jessica Temple and Lewis Temple Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Coping With Loss While Raising a Special Needs Child With Guest LaTanya Sothern

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

Play Episode Listen Later Nov 5, 2020 91:38


Episode 62: Coping With Loss While Raising a Special Needs Child With Guest LaTanya Sothern In this episode, we discuss navigating loss, while also raising a child with special needs. LaTanya Sothern's oldest son, Tre, was born with autism and a musculoskeletal disorder that required numerous surgeries. LaTanya discusses that she had 2 first trimester miscarriages before she gave birth to her oldest son. She got pregnant again when Tre was 3 years old. At that time, Tre always had numerous therapies and had to go to the hospital for appointments frequently. He was also receiving services through Infants and Toddlers. During LaTanya's second trimester, the perinatologist began noticing fetal anomalies in the babies. The baby was later diagnosed with Friends Syndrome. He had a diaphragmatic hernia and a cyst on the back of his head, both of which could be fatal. At 6 months gestation, LaTanya was given the option of terminating the birth, or having a traditional birth or a C-section. She chose not to terminate the pregnancy and switched obstetricians to a doctor who was across the street from the NICU hospital. She went into birth at 37 weeks. After Jay Raphael was born, he went straight to the NICU hospital. The hospital tried to keep his oxygen levels up, but he was only able to breathe with someone manually pumping air into his lungs, so the family decided it didn't make sense to continue rescue efforts. Due to having just had a c-section, LaTanya was not allowed to leave the hospital right after surgery. However, the other hospital allowed her husband to check the baby out of the hospital so he could bring the baby to her. She was able to hold her baby for a few minutes before he passed. During her time with her son, she was still under the influence of medications, so it didn't hit her that she had lost her baby until late that night. Having a strong faith-based community of support really helped her to cope. At first, she felt like she lost herself. However, right before she had her loss, Tre had a prolonged hospital stay due to RSV and was in the ICU for 2 weeks. Then, her grandmother passed away. Then a month later, Tre needed major back surgery. So LaTanya had to focus heavily on Tre. She also had to return to work pretty quickly. This all gave her space to not dwell too much on her loss as much as she could have. Additionally, Tre had lots of therapies and recovery time. Tre was making so many strides, that LaTanya spent all of her focus on Tre. Faith helped LaTanya a lot in coping with her loss. Tre also had a lot of help and people looking out for him. However, she still felt isolated, as there weren't a lot of resources for her at the time. She did a lot of questioning of her body. She later got together with friends and wrote a book about their losses. This helped her to realize that everyone processes loss differently. Victory Through The Rainbow Sothern Education Solutions The Birth of An Advocate Autism Speaks Understood.org Twitter 1 Twitter 2 Facebook Instagram Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook and join our parent group! Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org) Hosted by: Jessica Temple and Lewis Temple Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Transition To Adulthood Part 2: Employment, Socialization, Self-Regulation, and Daily Living Skills With Guest Dr. Matt Segall

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

Play Episode Listen Later Oct 29, 2020 84:19


Episode 61: Transition To Adulthood Part 2: Employment, Socialization, Self-Regulation, and Daily Living Skills With Guest Dr. Matt Segall In this episode, returning guest Dr. Mall Segall discusses the nitty-gritty of the transition to adulthood in teens and young adults with autism, including employment, socialization, self-regulation, and daily living skills. When Dr. Segall works with his clients, who are adolescents and young adults with autism, before he sets goals with the client and works to meet those goals, he takes into account their age, developmental levels, the level of support needed, and who the client actually is (parent or child). He also takes into account the context/setting of the goals, such as the workplace, school-based, personal health, and wellness/at home. If he is working with the young adult, it is really important that the individual participates in goal setting, to have buy-in, or the goal is much less likely to be reached. Dr. Segall finds that the person-centered approach works best, where the young adult is at the center of treatment and they discuss that person's hopes, dreams, and goals. what is meaningful to them. That helps them to determine the skills and contexts they would like to work on. However, there can be some generalizations among skills and settings. The family perspective can also help guide the goals and treatment. Sometimes, going with the easiest goals that have the most buy-in and motivation can help the teen get the most out of treatment. This can help open up options for treatment in the long run.  One goal of huge importance is self-awareness especially if the client is not sure what goal to set. This begins with being aware of their diagnosis, psychoeducation about symptoms, discussing the daily challenges the client experiences due to having autism spectrum disorder (ASD), talking about their strengths, and even having the client participate in their own IEP meetings. Dr. Segall also will discuss how the person sees the world and how the world might see the client. They also discuss what strategies can help them. Parents can help the young adult work toward these goals by assisting with finding a social support network, finding things the young adult loves to do, and helping set up visual supports. Emotion regulation is very important as well. We often teach the children emotions out of context, which can be ineffective. It is important to teach emotions and emotion regulation in the context in which they are most relevant. Emotional regulation and social interactions work hand in hand. Often, individuals are most dysregulated in experiences with other people, as social interactions can be emotionally provocative for those on the spectrum. A lot of times, social skills are present, but emotions are evoked. Dr. Segall helps the young adult to see if we change the environment or instead work on emotional or social coping skills. This would help them think about the context that they are in and then pull from their bank of toolboxes. Instead of appropriate and inappropriate behaviors, Dr. Segall recommends labeling behaviors as expected or unexpected behaviors, as what is expected is situational. This can help one discuss expected behaviors in certain situations, which can bring more awareness into a situation, and the young adult can see if they need to bring in more emotional regulation, behavioral regulation, or a strategy that lets them succeed at a higher level in that context.  Regarding daily living skills, Dr. Segall finds that younger clients are often not interested in working on these. He noted that the key is to start working on these goals young and build up to good habits and systems. It is useful to have family chore charts and rewards systems, then fade in new chores and goals or higher levels of independence. The earlier you start, the better habits we build in, and one can internalize responsibility and values. Parents can help by breaking down the tasks, using visual supports and lots of rewards, and modeling. Social goals in young adults with autism can include focusing on developing interests that give access to peers, finding inclusive peers who are open to learning about diversity or other neurodiverse peers, and finding tasks they want to do to expand their social world. Sometimes a problem is not caused by a social skills deficit but that the person hasn't yet found the right place that "got it." Again, it can be helpful to teach expected and unexpected behaviors in different situations, then how to engage in those behaviors or be a self-advocate. The context of learning social skills is really important. Employment is a huge area one might set goals in. To be successful at work, one needs to be aware of one's own behavior, have a plan, be organized, and have the stamina to engage in a workday and stay on task and complete tasks. Dr. Segall helps young adults plan and build routines, discover what the person would be interested in doing for a job, learn how to disclose about autism, and advocate in the workplace. He helps them learn how to ask for accommodations, which ones to ask for, and how to go about having these conversations. He often recommends that individuals look into autism-specific hiring initiatives, such as those through Microsoft or SAP. Regarding employment readiness, one can always find reasons they are not ready for employment. Dr. Segall instead recommends thinking about what opportunities will maximize one's strengths, talents, and abilities, where ASD challenges will least interfere, where challenges minimized, are where preferences are, and look there. His goals are to create as good a match as one can, know which supports one needs to put in place, and task a dignity of risk. Links: Emory Autism Center Education and Transition Services Transition Tool Kit The Peers Curriculum Social Thinking The Science of Making Friends ADA The Advice Project Neurodiversity hub Getting Hired The Spectrum Careers Autism At Work Roundtable   Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook and join our parent group! Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org) Hosted by: Jessica Temple and Lewis Temple Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Injustices Of Special Education For Dyslexia In The Time Of COVID With Guest Micki Boas

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

Play Episode Listen Later Oct 22, 2020 55:49


Episode 60: Injustices Of Special Education For Dyslexia In The Time Of COVID With Guest Micki Boas In this episode, we discuss dyslexia in the school system and distance learning for children with learning disabilities. Guest Micki Boas has two children with dyslexia. She was able to get her oldest son services through early intervention but Micki started noticing a larger problem once he started 1st grade in a charter school. They had him assessed and he was diagnosed with ADHD and dyslexia, but the school only provided 30 minutes of reading support a week. It took 4 years of fighting, 4 lawyers, and 4 different school formats to get her older son the services he needed.   Due to the injustice she found, she wrote a book called One In Five to help educate parents on the USA school systems and to provide actionable and useful ways to help support their child’s education. There were three main tenants as to why the USA is in the education crisis that it is in: 1) Special education in the USA has been severely underfunded for 47 years. 2) There is a lack of early intervention. Most children are diagnosed with dyslexia years later than they should have been, putting them significantly behind in reading and education. 3) There is inadequate teacher training and not enough educators to work with students with dyslexia. They don’t have to choose the system that is a best fit for your child, as long as they use a structured system. Now, with COVID, teachers are being trained on virtual tools and not on reading programs or special education. IEPs are still required to be fully followed. However, the treatments or education may not 100% translate via tele formats. With Zoom, reading has been more challenging for children with dyslexia. A lot of parents have purchased homeschooling reading programs to use as an adjunct to what the child learns in school. A lot of schools are also doing small group reading, small breakout rooms, using listen-to-read stories, and drilling sight words to teach reading. Although people are not conducting screenings or assessments in person, Micki recommends that you still have your child screened now, if needed, rather than waiting for COVID to end, as waiting could push services off for a long time. Links: Website One In Five Linkedin Simon & Schuster Author Page Invisible Red Tape Instagram Email   Decoding Dyslexia Baby Noggin Dr. Nadine Gaab     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 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Sky Full Of Stars: Battling Murphy's Law in the Special Needs World With Guest Meg Apperson

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

Play Episode Listen Later Oct 15, 2020 75:24


Episode 59: Sky Full Of Stars: Battling Murphy's Law in the Special Needs World With Guest Meg Apperson In this episode, we discuss coping with life when everything that could go wrong, does go wrong. Guest Meg Apperson's daughter Avery was diagnosed with craniosynostosis during the latter part of Meg's pregnancy. They initially thought Meg had placenta previa and found this condition instead. Avery's skull was measuring several weeks behind the measurements of the rest of her body. Meg knew something was very wrong, although the nurse and doctor disagreed. They allowed her to see a specialist, who agreed with Meg that her daughter's condition was serious. After a few more tests, doctors found out that her daughter's condition was more severe than they had originally thought. This meant that not only was the skull and brain affected by this condition, but everything surrounding it could be as well. There could also be abnormalities in other areas of the body. In order to prepare for Avery's birth, Meg did a ton of research. She wanted to be prepared for anything that she might experience after Avery was born. The unknowns started with the birth, as she and the doctors weren't sure what the safest type of birth would be for Avery. From the beginning, Meg listened to her intuition. With labor, she only had one contraction and came to the hospital, and two hours later, Avery was born. Had she not gone in when she did, her placental abruption would not have been found. Once Avery was born, there were so many unknowns as to what would work for treatment and what kinds of impairments she might have. From the beginning, Avery had respiratory difficulties, so Meg only had a few short moments with Avery. Shortly after, Avery was transported to a hospital with a better-equipped NICU. Avery was in the NICU for 6 weeks before she went home. Avery made it 3 days at home before she decompensated and needed another NICU stay. She was home for another 10 days before she had to go back to the hospital. She required a g-tube early on, and a trach not too long after. Complications in the first year included hydrocephalus, feeding issues, respiratory failure, staph in her trach, eye problems, shunt malfunctions leading to a coma, and septic shock. She underwent cranial vault remodeling and other various cranial and brain surgeries. Doctors also found a Chiari Malformation. She coded frequently and required a ventilator. It was a long and painful ride for her and her family.   During every admission, doctors hemmed and hawed about what to do and there was never a consensus about anything. Doctors would never commit to causes or treatments of any complication. Doctors kept trying to delay treatments and surgeries, to the extreme detriment of Avery. Numerous times, she became more ill due to the inaction of the doctor. Due to this, poor Avery had numerous additional complications that never should have occurred. In order to save Avery's life, Meg stuck up for Avery and advocated very heavily for the care she felt Avery required to live. To add to all of this, while Avery was still sick, Meg found out that her son Macson had a serious heart defect and needed almost immediate surgery. Meg found advocating for Avery very difficult at first because she dislikes confrontation. Over time, she learned to trust her instincts and she had done enough research to know she could stand up for her daughter. The more times she was right, the more confident she became. Meg has become an unbelievable and inspiring advocate for her daughter and through this, she has saved her daughter's life many times. Meg recommends doing research about your child's condition and ask every question you have. Write it down and ask all the questions, write the answers down, and ask doctors to clarify if you don't understand. For Meg to cope, she wanted to research everything and get all the information she could, in order to advocate for Avery. Writing and blogging were also very cathartic for her. Facebook groups for Avery's conditions were helpful for learning information and gaining a community. Seeing pictures of other kids with similar conditions also helped, as she could see that there were happy times in the future. Over the years, her coping strategies have changed. She tends to go with the flow, have faith, and let minor concerns go. Meg kept trying to go at a crazy pace, but her body started to protest. Meg had been running on adrenaline, but after a while, her body couldn't do it. To take care of herself, she gets lots of sleep, uses good sleep hygiene, does a lot of writing, has stopped drinking coffee, and uses positive self-talk. Links: Instagram Blog Sky Full Of Stars Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook and join our parent group! Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org) Hosted by: Jessica Temple and Lewis Temple Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Standing Strong For Your Child With Guest Jessica Barisano

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

Play Episode Listen Later Oct 8, 2020 83:55


Episode 58: Standing Strong For Your Child With Guest Jessica Barisano In this episode, we discuss bumpy journeys to diagnosis and treatment, advocating for your children, and making lemonade out of lemons. Guest Jessica Barisano noticed differences in her son early on, but doctors thought it was just lactose intolerance. It took seeing numerous pediatricians over 3 years for him to be properly diagnosed with a genetic growth disorder. This diagnosis opened up a whole new world, and Trent, her son, saw a slew of different doctors. He was later also diagnosed with Autism, ADHD, developmental delays, speech delays, and vision impairment. Having a diagnosis was helpful for Jessica, as she knew her son had something going on and it was relieving and validating that her motherly instincts had been correct.   The first order of treatment was hormone injections, which he will need for the rest of his life. Trent hates the nightly injection but he deals with it as best he can. Once they had the diagnosis of autism, Trent started applied behavioral analysis, which then helped him to engage in occupational and speech therapies. He is currently getting all of his therapies through the school system, including behavioral therapy and speech therapy. Although getting diagnoses was difficult for Jessica and Trent, therapies went quite smoothly, since the therapists were in the same hospital system.   School, however, was a different story. It was the hardest challenge for Jessica and Trent. Trent started daycare at age 1. It was painful for Jessica to see neurotypical children meeting their milestones, while Trent was not. Whenever she picked her son up, Jessica was given behavioral reports. Trent was asked to leave several schools, including private schools, charter schools, and faith-based schools due to behaviors that were beyond his control. Schools were not willing to work with Trent and Jessica. Trent started public school partway through Kindergarten, and it has gone well for him ever since. However, his earlier experiences had really affected his self-esteem. The public school system was able to provide them the proper IEP for Trent and was able to provide him the supports he needed to be successful in school.   Jessica initially went with what the doctors said until her son was finally correctly diagnosed. Once he was, she realized how she could advocate for her son, and began to be a huge advocate for her son. She armed herself with preparation, research, and questions.  Jessica always recommends making sure to have the “right team,” meaning the best doctors and therapists for your child. This may mean going through different doctors and therapists, but it is imperative to find the right fit for your child. It is very important to find a connection with each doctor and therapist. Just know, it may take a few sessions with that person to know if it is a good fit or not. To find helpful resources, as your child’s therapists, as they have all the inside scoop on resources.   Links: Collaborative Corner Facebook Instagram Youtube     Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook and join our parent group! Check out our podcast Facebook page!     Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org) Hosted by: Jessica Temple and Lewis Temple Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
Opposite Ends of The Spectrum With Guest Michele Doss

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

Play Episode Listen Later Oct 1, 2020 57:58


Episode 57 : Opposite Ends of The Spectrum With Guest Michele Doss   In this episode, we discuss opposite ends of the special needs spectrum: from nonverbal to giftedness. Guest Michele Doss's oldest child is gifted, her youngest child has autism and epilepsy and is mostly nonverbal, and her middle child has oppositional defiant disorder, has been kicked out of school twice, and is currently homeschooled. Her youngest son was born with a lot of health issues. He had severe allergies to most of the foods Michele ate during breastfeeding. Once, after she ate cheese dip, he went into anaphalactic shock. Then, when he was 10 months old, he started exhibiting unusual movements and he was later diagnosed with epilepsy (myclonic epilepsy). For the next 2 years, he had up to 30 seizures a day. Her son started in early intervention very early. Because he was involved in early intervention, the state paid for his autism evaluation. He was diagnosed with autism around age 2. He started speech therapy very early through early intervention. At the time, he would repeat what he heard, but would not communicate in any meaningful way. After turning 3, he was enrolled in public school. While at school, he started eloping frequently, but due to not being able to communicate, he couldn't tell anyone his name or the name of his mother, which was very scary to Michele. After that, they started working heavily on speech to improve safety. Her son is now able to say a few important words. He has worked very hard in speech therapy and applied behavioral analysis. Her youngest son has been in both public school and home schooled, but ended up requiring a private school for his special needs. In order to help with eloping while he is at home, she made sure all of her doors at home lock from the inside, and in order to get out, one needs a key. Their backyard is fenced in and there are padlocks on their gates. Now when they go out, they use their service dog, who is attached to her son. However, they don't go out a lot due to the risk of elopement. For language, they initially tried the PECS system, but it wasn't a good fit for him. They used proloquo2go for a long time. Now, to help make sure he can communicate his needs, they talk with him face to face and make sure they take the time to let him say what he needs to say. ABA helped them realize they needed to give him time to process what they are saying and use fewer words, so that he understands what is being asked of him or said to him. It is hard to take him to the doctor because he can't communicate that he doesn't want to be there, doesn't understand why they are there, and that he is afraid. So she takes her other 2 children as well in order to help. When they go out in public and he has a tantrum, it has been hard for the family because other people don't understand why a teenager would have a tantrum. Other people have said things to her under their breath. Her son's epilepsy is now well managed, although it took 5-6 years to find the right medicine for him. During COVID, he has started having more seizures. He now has a different type of seizures, call gelastic seizures, where he he starts laughing hysterically out of nowhere and when they stop, he falls right asleep. Due to the seizures, they limit where they go, because certain things, such as the lighting, can trigger seizures. Her 16 year old son is gifted. He started putting letters in alphabetical order at 8 months old and was reading at 2. In elementary school, the teachers suggested he be assessed for giftedness. During testing for school placement, he passed the giftedness test. He started on the gifted route in 5th grade. When he was young, they needed to keep him busy because he was always thinking. He led the boy scouts for his age group, did sports for a while (until he got a concussion). To help keep him stimulated, he has taken all honors and AP classes. In middle school, he took 4 high school classes, so he was essentially a year ahead when he started high school. This upcoming year, he will be dual enrolled in high school and college. Although he also has sensory processing disorder, he never needed an IEP or 504 plan. If you suspect your child is gifted, Michele recommends keeping in touch with the teachers to see if they think the child should be tested or keep them involved in different activities in the classroom to keep stimulated and engaged in school. As they get older, make sure they are challenged, so they can stay on task. Michele recently got involved with education consulting, where she talks with parents who have kids with different needs, and helps them find out what is going on and how to tailor education to the child's needs. She guides the parents through the steps to find out what the child needs help with and to find different pathways for the child to learn. She helps find options for the children. She recommends finding a support network for you and your children as well as finding activities and groups for your kids to try out and become engaged in.   Links for Michele: Website Facebook Instagram Proloquo2Go Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check out our Facebook Page! Check us out on Facebook and join our parent group! We are also on Pinterest! Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.  Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org) Hosted by: Jessica Temple and Lewis Temple Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2020 Jessica and Lewis Temple

Thriving in the Midst of Chaos: Parenting With Special Needs Kids
The Invisible Disability With Guest Bonnie Wiscombe

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

Play Episode Listen Later Sep 24, 2020 43:50


Episode 56: The Invisible Disability With Guest Bonnie Wiscombe In this episode, we discuss the unique challenges that come with kids who don’t “look” like they have special needs but still need extra patience and consideration. Guest Bonnie Wiscombe homeschools all of her 9 children. Her daughter Vivian has special needs. Vivian is a twin, but her twin doesn't have special needs. This made it easier to pick up on the disabilities more easily. Her milestones were a lot more delayed than her twin's. Vivian has always been homeschooled, but for a few years, she was able to attend public school one day a week, which helped to get her an IEP and resources through the school system. Vivian was diagnosed with a learning disability in kindergarten. Her teacher had brought numerous concerns to Bonnie's attention, and so Bonnie got Vivian assessed through the school district. The school did evaluations for occupational and speech therapy. However, they weren't able to provide a clear-cut diagnosis. Vivian was diagnosed with learning delays. Her daughter also did very in depth testing with the psychologist and was diagnosed with ADHD as well. The psychologist afterward recommended medication to help with attention, which Bonnie chose to help her daughter with symptoms of ADHD. This has been very helpful in assisting her daughter in making progress with her learning disability. Her daughter was having difficulty not only academically but with attention, playing with others, and transitions from one activity to another. She was provided with an IEP early on in schooling. However, she moved to a new district recently, and has been doing only homeschooling, so she does not currently have an IEP. However, when she did have an IEP, they took good data and they re-evaluated Vivian every few months, so they could see continued progress. Vivian is currently seeing a dyslexia tutor to help with learning disabilities, which is helping tremendously. When her daughter is around other kids or families, Bonnie makes sure to communicate with the other parents about what Vivian is going through and what to expect. She asks others to offer warnings to Vivian before ending an activity. Bonnie has struggled with Vivian's peers being mean to her. Therefore, Bonnie tries to explain things to the children in an appropriate way and ask for patience with Vivian. Bonnie also does role plays with her daughter to help Vivian learn how to interact positively with other children.     Links for Bonnie: Blog  Clothing Business Podcast  Instagram ST Math Dyslexia Pros Lindamood Bell System Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check out our Facebook Page! Check us out on Facebook and join our parent group! We are also on Pinterest! Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org) Hosted by: Jessica Temple and Lewis Temple Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2020 Jessica and Lewis Temple