Carole Blueweiss is a Doctor of Physical Therapy, Geriatric Clinical Specialist, and Yoga Teacher. She treats adults and children, and has received degrees from Tufts, Boston University and Northeastern University.  She is a practitioner of the Feldenkrais Method® and the Anat Baniel Method® NeuroMovement®.

Carole hosts a podcast titled Wisdom Shared and is a posture coach and documentary photographer on a mission to help people stay tall.

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Meet the experts on the frontlines: the parents of children with special or unique needs.

What do they wish they knew then that they know now? These parents share their insights and experiences with traditional and non-traditional professionals, their advice, and their wisdom. The lessons learned are valuable for all parents, health care workers, and educators.

SHOW NOTES

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Episode Summary

In this episode, I had the privilege of speaking with Simon Ratcliffe—a former advertising executive, husband, father, and podcaster who lives in the UK with his wife and their three children. His podcast, “Turning the Tables,” offers candid and inspiring stories from people who have turned adversity into advantage. It was born out of Simon’s own life experiences, including a severely debilitating bout of Chronic Fatigue Syndrome, and his desire to help listeners find new purpose and fulfillment in life. Simon shares about life as a successful businessman and about parenting his 20-year-old daughter Francesca who was diagnosed at age three with Dravet syndrome. Since then, Francesca has taught him so much—from how greeting people with warmth opens the heart, to how unconventional approaches can lead to amazing outcomes. And his own bout and recovery from Chronic Fatigue has given him tremendous insight into—and compassion for—the experience of adversity and the possibility for transformation that it unlocks. I ran into some adversity myself when I had to rely on the backup audio when putting together this episode. Sometimes wisdom can be found amidst the messy reality. That’s certainly true for this episode, because this story was meant to be told.

 

Episode Notes

RESOURCES MENTIONED IN THIS EPISODE

Dravet Syndrome (aka “severe myoclonic epilepsy of infancy”)
https://www.epilepsy.com/learn/types-epilepsy-syndromes/dravet-syndrome

https://www.dravetfoundation.org

Chronic Fatigue Recovery Program: ANS Rewire
https://ansrewire.com/

Simon’s Podcast: Turning the Tables
https://www.podpage.com/turning-the-tables/    

Simon’s website
https://www.brandwithsimon.com/


SIMON’S RECOMMENDED BOOKS

A New Earth by Ekhart Tolle

The Surrender Experiment by Michael A Singer


EXCERPTS FROM THE INTERVIEW
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 9, Simon Ratcliffe, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”

 

It isn’t a straight line to recovery from Chronic Fatigue Syndrome

 

We’re in the middle of COVID right now. There are many people experiencing very different symptoms and no one has the answer.

 

To get through a chronic illness, you have to completely reframe what the idea of recovery is.

 

It takes a long time for your brain to recondition itself or retrain itself around positive thoughts.

 

Every time I had a negative thought, I would reframe it in my head.

 

It was clear that a developmental delay would mean that she would need in a special school.

Lot of kids with conditions have a lot of potential, but because of the resources needed to bring that out in a child, they end up settling for good average.

 

Education is more geared around helping with independence, which is fine, but a lot of children like Francesca will not be able to live an independent life. 

 

People with special needs, need to be categorized as important as any other diverse group.

 

Recognize that the situation you are in, if you have a child with special needs, puts much greater pressure on you.

 

We need to see individuals not labels.

 

It took the chronic fatigue to enable me to completely re reboot my mental state, my life, my priorities, my thinking.

 

Why don’t we live life with rose-tinted spectacles on? Why is it a good idea to be painfully realistic about everything?

 

KEYWORDS

  • overcome
  • seizure
  • mindfulness
  • epilepsy
  • reframe
  • infant
  • chronic fatigue syndrome
  • adversity
  • dravet
  • diversity
  • brain training
  • illness
  • special needs
  • wisdom
  • education
  • advertising
  • special education

 

Episode Summary

In Episode 8 of Wisdom Shared, I sit down with my friend, Rosemary Bushey, and her 15-year-old daughter Lauren who was diagnosed with a mental illness in 2018. Signs and symptoms appeared much earlier but Rosemary and her husband assumed it was typical teenage defiance. It was only after witnessing a decline in grades, unusual behaviors and what they refer to as The Crisis that led to Lauren’s hospitalization, that they finally received a diagnosis of Obsessive-Compulsive Disorder (OCD). A staunch advocate for her daughter and removing the stigma around mental illness, Rosemary is currently getting her master’s in Clinical Mental Health Counseling. In this episode, she shares some of the behaviors and activities Lauren engaged in, how the family responded, her guilt over not recognizing the patterns sooner, and how she and other parents can advocate for their children and take care of themselves. Lauren speaks openly about what it’s like to be diagnosed with OCD, and she offers up her wisdom to other kids and parents and emphasizes how important it is to talk about what’s going on and not to be ashamed.

Episode Notes

Rosemary Bushey currently lives in New Hampshire with her husband and two daughters, Lauren 16 and Amelia 13. She is a 49-year-old runner, coach, and vegan Instagram influencer. Rosemary was born in Columbia, South America and has lived in New York for most of her life. She is currently completing a master’s degree to work as a bilingual Clinical Mental Health Counselor. She is pursuing this degree because her older daughter was diagnosed with Obsessive-Compulsive Disorder (OCD) at age 14. Rosemary has always been passionate about food, fitness, and the body/mind connection. Two years ago, she adopted a vegan lifestyle, and is avidly exploring the connection between mental health and nutrition. She shares vegan recipes and gorgeous photos of the food she has prepared on her Instagram page, @simplyveggielicious. Lauren loves to write, draw, and sing.

https://www.instagram.com/simplyveggielicious/

Song credit: “idontwannabeyouanymore” by Billie Eilish, sung by Lauren Bushey

 

RESOURCES MENTIONED IN THIS EPISODE

FOUNDATIONS

International OCD Foundation
https://iocdf.org

 

TREATMENT FACILITIES

Bradley Hospital
https://www.lifespan.org/centers-services/intensive-program-obsessive-compulsive-disorder

 

Rogers Hospital
https://rogersbh.org

 

McLean Hospital 
https://www.mcleanhospital.org

 

HOUSING FOR FAMILIES

Ronald McDonald House
https://www.rmhc.org

 

APPROACHES

Integrative Medicine

 

Cognitive Behavioral Therapy

 

Exposure Therapy

 

EXCERPTS FROM THE INTERVIEW
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 8, Rosemary Bushey, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.

 

QUOTES FROM LAUREN:

I always struggled with my OCD, so I always knew something was wrong, but it was so normal for me that I was kind of used to it 

OCD feeds off of stress. So whenever I’m stressed out about something, the OCD just gets much worse.

I always had urges to ritualize. And when I felt uncomfortable, I’d have to fix things a certain way.

I had these fears of my family dying. If I didn’t move something a certain way in my room, I couldn’t leave my room until I fixed everything a certain way, which took a while. 

For the kids that are struggling with this, you know, trust your parents, they’re trying to help you 

You have to help yourself and you have to work towards bettering yourself and you can’t give up.

Stop refusing to take other people’s help. I was refusing to take my medicine because I was too scared. Even the smallest steps can make such a big difference. You have to think of the future you want for yourself. You have to think about how it’s going to help you in the end. It might hurt now, but push yourself.

It gives you more power over your mental illness by feeling free to talk about it with other people, like to be able to learn about it and inform others about it, and really just know everything about what you’re going through.

I feel like the foods that are in the vegan cuisine are much better for your mental health.

 

QUOTES FROM ROSEMARY:

When she was diagnosed with OCD, I had to jump through so many hoops in order to find help.

A lot of her OCD started manifesting in the way her shoes needed to be in certain way.

We had no clue that we were dealing with OCD… it was exhausting.

She would come home and do homework for hours and hours in a way that wasn’t normal. She kept erasing. If a letter wasn’t completely perfect, she had to erase it and do it again. 

I kept seeing the compulsions but I didn’t see the obsessions. The obsessions were hidden.

As parents, the most difficult thing we had to deal with was feeling guilty. The feeling of guilt because I kept saying, “Oh my God, how could I ignore the signs?” I knew they were there, but she was functional. And all her doctors said, “there’s no way you could have known. There’s no way anybody could have known she had OCD,” but I kept blaming myself and saying, “Oh my God, I wish I would have found help before.”

She was looking for me to repeat the same phrase in the same tone of voice exactly the same way I said it before. There were times that she needed to repeat or make me repeat things three times or five times.

There was no way anybody could communicate with her. There was no conversation, no communication. 

She couldn’t dress herself. She couldn’t choose what to put on. She was overwhelmed by choosing what to wear. And then it got to a point where she couldn’t help herself dress. She would be very stiff and we would have to dress her, but she couldn’t help. She would scream and get into a panic and anxiety because she wanted her pants put on a certain way. But she couldn’t move her legs. She had to be stiff. It was extremely weird, bizarre behavior. Then she couldn’t brush her teeth because she wasn’t supposed to move her arm.

For Hispanic people, it is a huge stigma mental illness. They don’t talk about mental illness. In this country too, there’s a lot of stigma related to mental illness.

Last year, I put her basically on a plant-based diet and its helping her and she feels better. She feels good about what she’s putting in her body.

She is so mature and so knowledgeable about her disorder. It really makes me proud.

My beliefs were aligned with my nutrition, with my choices. 

As a parent, and I could say to any parent, we are the best advocates for our children. 

Just knowing other parents are going through the same or similar situations can be very comforting and can help a lot.

Show Less

 

Episode Summary

Beril Tokcan was a designer in Italy before moving back to Turkey to raise her family. Sooner than expected, she gave birth to twins, Emre and Denise. They spent the first five weeks in the neonatal intensive care unit while Beril, a single mother, traveled back and forth from her home multiple times a day to be with them. And when at 13 months Emre was diagnosed with Cerebral Palsy and she told by two doctors that he would never walk or talk, Beril decided to take matters into her own hands.

The one method she intuitively felt would allow Emre to reach his potential, The Anat Baniel Method of Neuromovement, was not available in Turkey so she traveled to Canada. After seeing profound changes in her son, she decided to become a certified ABMN practitioner. Once Beril was certified, she returned to Turkey and opened up a clinic in Istanbul. Practitioners come from all over the world to work in her clinic, helping families from all over Turkey.

Beril is one of the most determined, passionate, honest, and articulate women I have ever met.She describes how she guided Emre’s teachers to give her son agency. She insisted that Emre learn to stand up for himself when bullied; to follow his passions; and to believe in himself. He recently earned his brown belt in judo. Beril wrote a book (soon to be published in the United States) called “I Am Free Now,” something Emre said while in Barnes and Noble after receiving an ABMN lesson. 

NOTES

ABOUT BERIL TOKCAN
After studying graphic design in Milan and visual communication in Sydney respectively, Beril Tokcan returned to her homeland Turkey in 2003 and founded her design studio in Istanbul.

She came across the Anat Baniel Method® NeuroMovement (ABMNM) in 2012, while in search for a method to help her son, who was diagnosed with PVL /CP due to premature birth.

She completed the ABMNM Professional Training in 2015 and consecutively all the ABMNM Mastery Programs (for Children with Special Needs, for Vitality and Anti-Aging, and for High Performers). She also completed Kids Yoga, Yoga Therapy and Jeremy Krauss Approach trainings and participates in the ABMNM Professional Trainings as an assistant.

She works with children and adults at her practise in Istanbul, offering private lessons, group classes and workshops, with the mission of transforming the impossible into possibie and making positive changes in people’s lives.

Beril is the author of ‘I Am Free Now’.

www.beriltokcan.com

Instagram: beriltokcan
@devinim

Anat Baniel Method® NeuroMovement® Practitioner
www.beriltokcan.com
www.devinim.ist
 

RECOMMENDED RESOURCES
(list compiled by Beril)

BOOKS

Awareness Through Movement,  Moshe Feldenkrais

Hardwiring Happiness, Rick Hanson

Hold Onto Your Kids, Dr.Gordon Neufold & Dr.Gabor Maté

Kids Beyond Limits, Anat Baniel

Move Into Lİfe, Anat Baniel

Parenting from the Inside Out, Daniel Siegel and Mary Hartzell

Positive Discipline for Children with Special Needs, Jane Elsen, Steven Foster & Arlene Raphael

Rising Strong, Brené Brown

Soft Wired, Michael Merzenich

The Brain That Changes Itself, Norman Doidge

The Brain’s Way of Healing, Norman Doidge

The Whole Brain Child, Daniel Siege and Tina Payne Bryson

Train Your Mind, Change Your Brain, Sharon Begley

Trauma-Proofing Your Kids, Peter A.Levine, Maggie Kline

HEALTHCARE PRACTITONERS

Dr.Paul Jordan
drjordan@drpauljordan.net
https://drpauljordan.godaddysites.com/

Dr.Roy Nuzzo 
Overlook Hospital, Summit NJ
973-306-9388
video.popc@gmail.com

Dr.Joseph C. D’Amico
212-757-6440
Info@drjosephcdamico.com

SPML
http://www.podopediatrics.net/spml
Facebook Group: SPML – Selective Percutaneous Myofascial Lengthening

Anat Baniel
415-847-1311
scheduling@anatbanielmethod.com

Judith Dack
judithdack@uptownstudio.ca
416-481-2381

Beril Tokcan
www.beriltokcan.com
Instagram: beriltokcan


EXCERPTS FROM THE INTERVIEW

You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 7, Beril Tokcan, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.

You have all these dreams about what’s next in your life.. … suddenly it’s all washed away and you’re left with a big unknown.

The gap was getting larger and larger every day. Our doctors kept telling me …. “They were born prematurely. We should wait a little more.”

There’s that motherly instinct saying, “something is wrong,” but you’re hoping it’s all fine because the doctor is saying it’s all fine.

There should be a more humane way to connect with him and see where he’s at and to help him get to the next step, not go 50 steps ahead. I had no idea what it could be, but I knew there should be a way so that’s when I started doing my research,

I had no idea how much movement has influence on the brain’s potential to learn and change it.

It [ABMN] works in different ways with each child because each brain is unique.

I was feeling very alone and isolated. I thought no one got what I was going through. I built these big walls around me and I just wanted to be inside with the two kids I just didn’t want to have anything to do with the outside world.

I started to see a psychologist. And one of the things that she told me really struck me. She said, “You have to put the oxygen mask to yourself first,” which I found out to be very true. 

I said out loud that I have a child with special needs. And that was the breaking point for me because before that, you know, of course I have a special needs child, but I couldn’t verbalize it. 

The ABM training was wonderful because you could look into each other’s eye and understand each other and feel each other without, without needing for words, it was such a safe place to be. 

I went to the [ABMN] training to learn the tools to help my son and other children, but I had no idea how much it would change me as a person. 

We need to see where the child is and offer different ways for him to figure out how to get to the next step.

He’s a child with confidence and determination and motivation because he figured things out for himself. And by me slowing down and by me connecting with him and by me giving him the space, he figured things out.

At one point he left his walker and started taking steps. And there was more fluidity in his walk and he opened up his arms and he said, “I’m free now.”

When he was diagnosed, we went to see a couple of neurologists and all of them basically gave similar answers of what he will never be able to do in life. 

How come they can speak so firmly about things that my son will never be able to do in life? He’s only one year old. It’s just that motherly instinct saying, I’m going to do everything in my power to help him improve his potential.

Sports has been a part of our journey, a big part of our journey because that’s where he likes to challenge himself and wants to play together with his friends. And I see that as the best therapy.

Trust your intuition in whichever path you want to take. And do a lot of research. Not everything will be useful for your child, but find your own rhythm and pace and what works for you. Don’t wait for answers to come to you.

No one has a magic wand. It’s a long process and it can be hard. But it can also be joyful and fun. Just embrace it all and take care of yourself. I wish I had started taking care of myself and helping me heal earlier. 

Find parents that are going through similar journey and process because you do need someone to walk this path with. 

I don’t believe in labels and I don’t think we need words like special or unique or extraordinary. I think each child is unique and special and extraordinary….. By labeling them, you’re pushing them outside of the circle. 

Be open enough to listen, but then listen to your intuition and let that be the guide in your decision-making process. 

The most important thing is that the child can learn and if they can learn, they can always learn more. 

EPISODE SUMMARY

Jill Bolte Taylor, a Harvard trained neuroanatomist, experienced a major left sided stroke in 1996. In this episode, she tells her story of resilience, perseverance, and the power of the connection and attention her mother bestowed on her. She gives us insight into her eight years of being differently abled, her inability to communicate like everyone else around her, and her feelings of vulnerability and vitality. Jill asks us to question the concept of “normal” and believes that to look at (and celebrate!) one’s abilities is powerful and essential. She speaks to all parents, healthcare workers and educators. Dr. Taylor is Author of “My Stroke of Insight,” and “Whole Brain Living,” and one of Time Magazine’s 100 Most Influential People in the World for 2008. She is the Founder of Jill Bolte Taylor BRAINS, Inc, a not for profit organization.

NOTES

You can follow Dr. Jill on Twitter 
@drjbt

Visit Dr. Jill Bolte Taylor’s website
http://drjilltaylor.com

Dr. Jill’s Ted Talk, “My Stroke of Insight”
https://www.ted.com/talks/jill_bolte_taylor_my_stroke_of_insight

The Harvard Brain Bank
https://hbtrc.mclean.harvard.edu

Fifty Trillion Molecular Geniuses Musical Composition
Cecelia Chorus of NY commissioned The Brothers Balliett for a musical composition, Fifty Trillion Molecular Geniuses, with texts drawn from Dr. Jill Bolte Taylor’s book and TED Talk My Stroke of Insight. The piece was performed at Carnegie Hall on Dr. Jill’s 60th birthday.

Read more: https://ceciliachorusny.org/updates-contact/brad-doug-balliett-composing-fifty-trillion-molecular-geniuses

Moshe Feldenkrais and The Feldenkrais Method®
The Feldenkrais Method® of somatic education was developed by Dr. Moshe Feldenkrais. It is a powerful  approach to improving life that uses gentle, mindful movement to bring new awareness and possibility into every aspect. The Feldenkrais Method is based on principles of physics, biomechanics, and an empirical understanding of learning and human development.Since how you move is how you move through life, these improvements will often enhance your thinking, emotional regulation, and problem-solving capabilities. Read more: https://feldenkrais.com

Anat Baniel and NeuroMovement®
Anat Baniel, a student of Moshe Feldenkrais, developed and evolved NeuroMovement® from  30+ years of  experience with thousands of clients using practical applications of brain plasticity principles. The Anat Baniel Method® approach is founded in neuroscience and the biodynamics of the human body, and utilizes movement and the 9 Essentials to create conditions for the brain to wake up and upgrade its own functioning.

The Nine Essentials
Essential 1 – Movement with Attention; Wake up to Life
Essential 2 – Slow; Luxuriate in the Richness of Feeling
Essential 3 – Variation; Enjoy Abundant Possibilities
Essential 4 – Subtlety; Experience the Power of Gentleness
Essential 5 – Enthusiasm; Turn the Small into the Great
Essential 6 – Flexible Goals; Make the Impossible Possible
Essential 7 – The Learning Switch; Bring in the New
Essential 8 – Imagination & Dreams; Create your Life
Essential 9 – Awareness; Thrive with True Knowledge

Read more about the Nine Essentials: 
https://www.anatbanielmethod.com/about/neuromovement/neuromovement-and-9-essentials

Recommended Reading:

My Stroke of Insight by Dr. Jill Bolte Taylor

Whole Brain Living by Dr. Jill Bolte Taylor (Available May 2021, published by Hay House)

The Feldenkrais Method by Staffan Elgelid, Chrish Kresge, with forward by Jerry Karzen, this book includes  perspective from 26 leaders and experts in the Feldenkrais field. It explains the importance of learning through movement with the brain’s attention as a means for physical and cognitive improvement and transformation. (Available May, 2021, published by Handspring.) Pre-order at feldenkraismovementbook.com to receive 10% off and free shipping in the US/UK. 

Awareness Through Movement by Moshe Feldenkrais

The Potent Self by Moshe Feldenkrais

Kids Beyond Limits by Anat Baniel

_______________________________
Notable Quotes from This Episode
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 6, Dr. Jill Bolte Taylor, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.

“How does our brain create our perception of reality?”

“I could not walk, talk, read, write, or recall any of my life. I became a complete infant in a woman’s body. I was minutes from death.”

“I knew nothing. I had no information in my left brain… I had no perception of my past. I was isolated completely in the present moment. It took eight years to recover all function of my left brain.”

“I was nothing but a breathing body in a bed. That’s how my mother described me.”

“I don’t use the term “victim” because I survived that day. I prefer that instead of calling people stroke victims—the victims died, the survivors survive—I encourage people to call us stroke survivors. It makes a difference. Words have power.”

“If you’re going to be a good teacher, you have to go to the level of the student.”

“When I experienced the stroke, I had incredible right brain ability. I was completely turned on to body language, physical language—all kinds of gifts of the right brain—far beyond the normal person. I could tell in an instant if someone was telling the truth or telling a lie, because the cells that could distract me from being able to tell that someone was telling a lie were turned off.”

“I was very blessed. And this is one of the greatest gifts Gigi gave me. From day to day, I couldn’t remember yesterday or the day before because all I had was the present moment. She kept reminding me of what I couldn’t do yesterday. She was enthusiastic about my ability to get better.”

“Every step is a celebration. I had to stay focused on what I could do, not on what I couldn’t do. So much of our society focuses on the disability. Let’s focus on and enthusiastically say YAY to what’s working, and then ‘what’s the next thing I can learn?'”

EPISODE SUMMARY

“What does it mean to ‘Man Up’? It actually means to stand down, take a good look at the situation, and stand from a platform of humbleness. Stand from a platform where strength comes from saying, I actually don’t know it all. Maybe I had to have a special needs daughter to understand all of that.” —Damas Manderson In this fifth episode of Wisdom Shared, we hear from a New Zealand father, husband and entrepreneur who gave up his career, country, and everything he knew for the opportunity to help his daughter and sustain his family. Damas Manderson’s daughter, now 17, was diagnosed at an early age with Cri du Chat (also known as 5p- syndrome), a rare genetic disorder. In this interview, Damas opens up about what he has learned while raising Kennedy Rose, whose condition includes a range of developmental challenges including autism, severe ADHD, aggressive behavior, lax ligaments, seizures, heart issues, and the possibility of sudden death. Damas describes his journey with conventional and unconventional therapies, navigating well-intended advice, religion and spirituality, and the power of vulnerability and kindness. His story is one of perseverance, hope, compassion, and love. All parents, healthcare professionals and teachers can learn from this father who shares his wisdom so generously.

NOTES

FOR MORE INFORMATION:

The 5P- Society (Cri du Chat)
https://fivepminus.org/

Cri du Chat Society Facebook Page
https://www.facebook.com/CriDuChatSociety

National Organization for Rare Disorders 
https://rarediseases.org/rare-diseases/cri-du-chat-syndrome

 

QUOTES FROM THIS EPISODE:

You are welcome you to share the wisdom from this episode. Please be sure to credit: “Ep. 5, Damas Manderson, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.

22:30 “When you’re hurt, you hurt others”

30:59 “If empathy was the first point of reference for people, that would go a long way”

39:07 – “A handful of special needs parents can fall into the category of where the normal children become caregivers whether they want it or not.”

44:00: “What does it cost me? It’s only cost me money. What have I gained? A loving wholesome family, with a value that we will carry forever. My family is my legacy.”

50:00 “There’s not an instruction book for how to be an effective special needs mother and father or husband and wife.”

51: “Kindness doesn’t mean weakness. Kindness means strength.”

EDITOR’S NOTE: 
Damas and Dina Manderson intend to start a foundation for their daughter, Kennedy Rose. These episode notes will be updated to include foundation information when it is available. (1/9/2021) 

EPISODE SUMMARY

Paria Hassouri admits to being blindsided when the child she gave birth to and called her son announced at 13 1/2 years old that she identified as a girl and wanted to be recognized and acknowledged as her mother’s daughter. In this episode, we explore the topic of gender identity and a parent’s journey from doubt to acceptance. Paria opens up about her personal transformation and how she learned who her daughter is from the inside out, realizing that the way forward is not to judge, but to listen; not to try and fix, but to connect and love.

NOTES

EPISODE SUMMARY

Eleven years ago Mara Yale’s daughter, Mia, had a stroke at birth. In this episode, we hear how Mara’s research, advocacy, self-education, and curiosity informed her approach to parenting and contributed to her daughter’s remarkable recovery. Mara shares considerations that apply across the board for all kids, regardless of age, diagnosis, severity of injury, or track in development as well as information on both the unconventional and conventional therapies she chose for Mia.

NOTES

ABOUT MARA YALE

Website: www.marayale.com
Facebook Page: www.facebook.com/yalemaram
Instagram: @maramyale
Blog: www.marazoemia.net

ABOUT REGAME-VR LAB AT NORTHEASTERN UNIVERSITY

Research in the Rehabilitation Games and Virtual Reality Laboratory at Northeastern University focuses on the sustainable, evidence-based integration of virtual reality (VR) and active video games into rehabilitation practice for children with neuromotor impairments such as cerebral palsy. 

Website: www.web.northeastern.edu/regamevrlab
Facebook: www.facebook.com/regamevrlab
Twitter:@regamevr  

Audio from ReGame-VR lab interviews produced by Benjamin Bertsch and Adam Fischer.

LINKS FROM INTERVIEW 

I-ACQUIRE: www.nihstrokenet.org/i-acquire/family-resources
I-ACQUIRE clinical trial for constraint induced movement therapy: www.clinicaltrials.gov/ct2/show/NCT03910075
Cerebral Palsy Soccer: www.cpsoccer.us
Hand in Hand Parenting: www.handinhandparenting.org
The Reading Promise: www.makeareadingpromise.com
Dr. Karen Pape: www.karenpapemd.com
Children’s Hemiplegia and Stroke Association (CHASA): www.chasa.org
International Alliance for Pediatric Stroke: www.iapediatricstroke.org
Sheryl Field, Field Center for Integrated Development: www.thefieldcenter.org
Feldenkrais: www.feldenkrais.com
Somatic Experiencing: www.traumahealing.org/about-us

EPISODE SUMMARY

In this episode, Claude Winn shares her journey raising her twenty-year-old daughter, Maya, who was diagnosed at an early age as being on the autism spectrum. Claude talks about learning how best to support her extraordinary child; her explorations into alternative therapies; the advocacy needed to ensure Maya’s right to participate in activities available to so-called typical students; and the importance of trusting and caring for herself all throughout the process.


NOTES

About Claude Winn

website: http://claudewinn.com

Insta: @cwinnart

 

Song Credits

How Far I’ll Go
written by Auliʻi Cravalho
© 2016 Walt Disney Records

 

LINKS FROM THE INTERVIEW

http://anatbanielmethod.com

http://suzingreen.com

http://yogalambertville.com

http://theclass.com

http://ramahdarom.com

https://www.autismspeaks.org/verbal-behavior-therapy

https://www.autismspeaks.org/floortime-0

EPISODE SUMMARY

Anne Pratt, from Indianapolis, Indiana is an ABM practitioner and scientist whose 4 year-old son Charlie was diagnosed with cerebral palsy when he was 7 months old. Anne describes her experience with traditional and non-traditional approaches to Charlie’s individual needs, the challenges that her family faced, and how they found their current team of doctors, therapists, and support network. Anne also talks about her ongoing advocacy for Charlie, her own self-care, and offers wisdom to families with unique children. Her point of view is inspiring, informative, and deeply moving.


NOTES

ABOUT ANNE PRATT

Website: www.indymovevolution.com

Email: anne@indymovevolution.com

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Defining the Body

The corpus callosum is the primary commissural region of the brain consisting of white matter tracts that connect the left and right cerebral hemispheres. https://www.ncbi.nlm.nih.gov/books/NBK448209/

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