Wisdom Shared with Carole Blueweiss

NEUROMOVEMENT THERAPY: Anat Baniel and NeuroMovement® (ABMN®)

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.

Read more about the Nine Essentials:

https://www.anatbanielmethod.com/about/neuromovement/neuromovement-and-9-essentials

THE PODCASTING WORKSHOP WITH SETH GODIN: how I learned to podcast!

https://akimbo.com/thepodcastingworkshop

EPISODE SUMMARY

JoAnne Robb is a psychotherapist from Oakland, California, who counsels adults and parents of children with Type 1 Diabetes. She is a mother of three. Her oldest and youngest have diabetes and her middle child does not, although as you'll learn through our conversation, he is still very much impacted by the disease. In this episode, JoAnne shares first-hand knowledge and personal stories. We learn why managing  Type 1 Diabetes is as much an art as a science; why children and  teenagers have their own dynamics, how technology can be a double-edged sword when it comes to managing the disorder, and how support is available if you know where to look.  

JoAnne explains why Type 1 is a family disease and the importance of finding support and community. She speaks of the advantages and disadvantages  of different insulin delivery systems, the role food plays, the intense financial implications of managing Diabetes, and much more. 

Select Quotes

You are welcome to share the wisdom from this episode. Please be sure to credit: “_Ep. 11, JoAnne Robb, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”

“When we first were diagnosed—you'll see that I'm using the word ‘we’; I think of [Type 1] as a family disease in a lot of ways, especially when kids are young. It's too much for the kids to carry by themselves.”

“When I thought about what would be hard for a kid around diabetes management, I would have thought of the shots and the needles and the pokes, but really what's hard is having this constant numbers game.”

“There's a lot of anxiety about being a parent of a kid with Type 1. And I feel like some of the information out there kind of heightens that anxiety. I feel like my contribution to this dialogue is to say, there's a way to do this more calmly.”

"Pump supplies are really expensive, CGM is really expensive, insulin is really expensive."

“How we approach [Type 1 Diabetes] emotionally truly makes a difference in our relationship to the disease…and ultimately in our children's relationship to the disease.”

"And the other thing that's been completely invaluable, which I could not pitch more strongly, is diabetes camp...we went to family camp and we gained a lot of community, but also a lot of information.

“Restricting food too much can have a mental health boomerang effect that you really don’t want.”

"This is not just a medical condition, even though it seems like it is, It's also an emotional condition...and a lowercase t trauma."

"I do think that the way that parents talk about this trauma of diabetes makes a difference in the child's relationship to the disease."

“Learning Diabetes is like drinking from a fire hose.”

“The Diabetes community in general is very generous about wanting to help each other because we all know exactly what we're going through.”

“My biggest piece of advice is that you will learn this and your child will be okay and you will be okay. And that doesn't mean everything will be good all the time, but this is survivable.”

Resources from this Episode

SUPPORT RESOURCES

• SWEET TALK: JoAnne’s parenting support site
  www.diabetessweettalk.com
• BRAVE BUDDIES, an online listserv which supports parents of kids with Type 1
  https://groups.io/g/BraveBuddies
• DIABETES CONNECTIONS PODCAST with Stacey Simms
  https://diabetes-connections.com

CAMPS

• https://dyf.org
  JoAnne writes, “My personal attachment is to DYF, which is local to the Bay Area and has an amazing camp, for kids and kids with their families, in Kings Canyon National Park.”
• Camp Sweeney in Texas
  https://campsweeney.org
• Camp Kudzu in Georgia
  https://www.campkudzu.org
• Clara Barton & Camp Joslin Resident Camps in Massachusetts
  https://www.bartoncenter.org/programs/resident-camps/
• Camp Morris in North Carolina
  https://www.thedfc.org/campmorris

LEARN MORE ABOUT THE HIGH PRICE OF INSULIN

• https://www.rand.org/news/press/2020/10/06.html](https://www.rand.org/news/press/2020/10/06.html
• https://www.rand.org/blog/rand-review/2021/01/the-astronomical-price-of-insulin-hurts-american-families.html

Ariana Speyer is an experienced editor, writer, and copywriter turned Anat Baniel Method NeuroMovement® (ABMN®) practitioner. She lives in New York City with her husband Pat and their nine-year-old daughter, Calliope. In this episode, Ariana shares about life with Calliope, who has a rare genetic syndrome called Sturge Weber Syndrome, and how ABMN® has made a difference in their health and well-being. Ariana underscores that people are more multidimensional than their diagnosis, and reminds us how isolating it can be to live outside of society’s so-called norms. When you break it all down, we’re all seeking to belong and to be part of a welcoming community. Learn more about Ariana and her work at arianaspeyer.com.

You are welcome to share the wisdom from this episode. Please be sure to credit: “_Ep. 10, Ariana Speyer, Courtesy of Wisdom Shared Podcast with Carole Blueweiss._”

In my conversation with Ariana, we covered a lot of ground. Here are some of the highlights.

1. Parenting a child with special needs in some ways prepared Ariana and her husband for the COVID-19 pandemic, “Because risk-benefit analysis is something we've been very used to doing since my daughter was very little, and that's something people are grappling with a lot of: Is this worth it? Does this make sense? Is the benefit worth the risk? You know, all of those questions we have to ask ourselves now all the time we were already pretty used to asking ourselves, like, is it worth it to have an MRI?”
2. We discuss labels, and how the bureaucratic drive to quantify every special needs child is an ongoing challenge for parents. “If I were to talk about her as a human, as somebody that I love, I would say she's silly. She loves to dance. She's nine years old. She enjoys all kinds of music and hanging out with her grandparents and watching movies. If I was going to talk about her labels, I would say that she's non-ambulatory, non-verbal, and she has multiple disabilities.”
3. Bedside manner isn’t something every doctor is trained in, but it can make all the difference. “Ideally, a doctor will come with a certain amount of positivity and kind of connectedness. That makes you feel safe and like you're working together collaboratively to figure out the next best thing.”
4. The Anat Baniel Method, or ABM Method, provided a transformational, movement-based way of working with Calliope and a new career and community for Ariana. “From the very beginning, I just felt a visceral response to the ABM approach, which is so gentle. And so hard to describe—giving Calliope movement experiences that she wouldn't have on her own in a way that would develop her own potential.”
5. In ABM, resting is part of learning. “Rest is so essential to how ABM operates in every movement lesson. There's so much resting and that's a time when you can kind of notice differences and noticing differences in our work is the fundamental unit of learning. So having intensive practice time, and then resting in between to see what happens with how the system takes that information in is an interesting model. And it's been shown to work pretty powerfully.”
6. It’s hard not to compare your neurodiverse child’s development to “typical” children. “Every birthday was incredibly painful and the uncertainty felt more overwhelming than it does now. There's something to be said just for the passage of time and it not being so fresh, but…there's always going to be grief.”
7. Having a community of other special needs parents can be really good medicine. “The support of that community is essential for mitigating or at least bonding over all of these challenges so that they feel less isolating and also less scary.”
8. I always ask parents who I interview how they take care of themselves. For Ariana, it’s a combination: “ABM movement lessons saved my sanity and my body during the pandemic. I've become very dependent on them in a way that I hadn't anticipated would be possible. Going for walks has been another thing that I've found incredibly therapeutic. And then other than that, you know, trashy TV, ice cream, and beer.” 

TERMS, TREATMENT MODALITIES, and RESOURCES in this EPISODE

ARIANA SPEYER
https://www.arianaspeyer.com

ANAT BANIEL AND NEUROMOVEMENT®
https://www.anatbanielmethod.com

EMDR
https://www.emdr.com

EQUINE THERAPY
https://www.goodtherapy.org/learn-about-therapy/types/equine-assisted-therapy

FRUIT-EZE
https://www.fruiteze.com

MUSIC THERAPY
https://www.musictherapy.org

SUZANNE MORRIS, Speech Therapist, Virginia
https://www.new-vis.com 
 

STURGE-WEBER SYNDROME
https://rarediseases.info.nih.gov/diseases/7706/sturge-weber-syndrome

THE WORLD’S BIGGEST PIANO MAT by SMART PLANET
Search for this product online and purchase from your preferred retailer.
 

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?

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

• https://www.drweil.com/health-wellness/balanced-living/meet-dr-weil/what-is-integrative-medicine/
• https://www.mayoclinic.org/tests-procedures/complementary-alternative-medicine/about/pac-20393581
• https://health.usnews.com/health-conditions/heart-health/integrative-medicine/overview

Cognitive Behavioral Therapy

• https://www.apa.org/ptsd-guideline/patients-and-families/cognitive-behavioral
• https://www.mayoclinic.org/tests-procedures/cognitive-behavioral-therapy/about/pac-20384610
• https://www.healthline.com/health/cognitive-behavioral-therapy

Exposure Therapy

• https://www.apa.org/ptsd-guideline/patients-and-families/exposure-therapy
• https://www.goodtherapy.org/learn-about-therapy/types/exposure-therapy
• https://www.mayoclinic.org/medical-professionals/psychiatry-psychology/news/exposure-therapy-effective-for-pediatric-anxiety-and-ocd/mac-20429918

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.

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
[email protected]
https://drpauljordan.godaddysites.com/

Dr.Roy Nuzzo 
Overlook Hospital, Summit NJ
973-306-9388
[email protected]

Dr.Joseph C. D’Amico
212-757-6440
[email protected]

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

Anat Baniel
415-847-1311
[email protected]

Judith Dack
[email protected]
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. 

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?'"

WISDOM SHARED PRODUCTION TEAM:
Produced by: Dr. Carole Blueweiss
Audio Engineering: Keith Pyatt
Marketing and Promotion: Coby Green-Rifkin

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

NOTABLE 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) 

ABOUT PARIA HASSOURI

Website: www.PariaHassouri.com

Book: Found in Transition

Facebook: www.facebook.com/paria.hassouri

Instagram: @laparia

Twitter: @pariahassouri

LINKS FROM INTERVIEW 

https://themoth.org/storytellers/cybele-abbett

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