46. Advocating While Having Cerebral Palsy With Guest Win Charles

In this episode, we discuss growing up with cerebral palsy. Guest Win Charles is a CP advocate, retired education, writer, and podcaster for 3 podcasts. Win knew at age 6 that she was different from her peers, but she didn’t know how. She was treated as able-bodied in school up until high school and was never treated any differently than her other classmates. She was only told she had “CP” on the first day 7th grade. She did further research on CP in high school, but didn’t discover that she had cerebral palsy until her 20’s, as it was always called “CP” and no one ever explained further to her. When she was initially told she had CP, she became sick to her stomach, but her mother wouldn’t let her stay home from school that day. Later, high school was very hard for her. She was in inclusion classes in all classes until 8th grade and didn’t enter any special education until high school. Kids would knock her over in high school, as they didn’t watch out for her. Unfortunately, people are still not always nice in adulthood, and still occasionally stare.

Win was not provided with any assistance with transition to adulthood. She had to approach the rehab faclities for assistance, find resources for herself, and had to do a lot of research for herself. Win wishes her mom realized how difficul day-to-day living was for Win. Her mother was her primary caregiver until Win was 14, and then others became caregivers for Win as well. Win had therapies from the time she was born, however. As an adult, Win is doing alternative therapies, which unfortunately, insurance doesn’t cover. Win wishes that her mother had sent her to better PTs when she was younger and had better at-home therapy programs. She wishes that medical technology were better back when she was born. Win recommends that once a person receives a diagnosis, parents should ask lots of questions, and do as much research as they can on the condition. For teens, make sure they get involved in Vocational Rehabilitation or find them a job coach. Win also found United Cerebral Palsy Association helpful. Win recommends that parents try to grow a strong social support network for themselves and their children.

Links:
Website
Ask Win Podcast
Artwork From CP Podcast
Amazing Voices of Teachers Podcast
Links to Win’s Books
Twitter
LinkedIn
YouTube
Her Facebook Page
Podcast Facebook Page
United Cerebral Palsy Association

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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

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