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The Gift Of Adversity: A Father’s CFS, His Daughter’s Dravet Syndrome

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Manage episode 293140523 series 2820196
Content provided by Carole Blueweiss and Dr. Carole Blueweiss. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Carole Blueweiss and Dr. Carole Blueweiss or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ro.player.fm/legal.

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?

Find and Follow Carole and Wisdom Shared:

The Wisdom Shared Team

  • Audio Engineering by Steve Heatherington of Good Podcasting Works
  • Co-Producer and Marketing Coordinator: Kayla Nelson
  • Production Assistant: Becki Leigh

  continue reading

41 episoade

Artwork
iconDistribuie
 
Manage episode 293140523 series 2820196
Content provided by Carole Blueweiss and Dr. Carole Blueweiss. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Carole Blueweiss and Dr. Carole Blueweiss or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ro.player.fm/legal.

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?

Find and Follow Carole and Wisdom Shared:

The Wisdom Shared Team

  • Audio Engineering by Steve Heatherington of Good Podcasting Works
  • Co-Producer and Marketing Coordinator: Kayla Nelson
  • Production Assistant: Becki Leigh

  continue reading

41 episoade

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