Raising a Child with Disabilities: Jane Fischer on Pushing Past “Never”
Jane Fischer
Author, Mother, and Advocate for Children with Disabilities
When Jane Fischer’s daughter Suzy was born in 1974, doctors said she would never walk, talk, or learn. Suzy spent the next five decades proving them wrong. It wasn’t until Suzy was in her late 30s that the family finally learned the name for what she’d been living with all along: Joubert syndrome, a rare genetic disorder. Today, Suzy works in a preschool and lives on her own with support. In this episode, Jane discusses what it was like to raise a daughter with disabilities, push past the doctors’ predictions, and help Suzy build a life of her own.
Hear Jane talk about:
The day Suzy was born, and the doctors’ advice to send her away
Finding help for a child with disabilities before Google
How raising Suzy tested her marriage
Shadowing Suzy at school, and the difference between inclusion and tolerance
Why doctors call Suzy a medical miracle
How a decades-long mystery was finally named Joubert syndrome
What she’d tell herself in that hospital room
Mentioned in this episode:
If You Knew Suzy: Pushing Past the Boundaries of Never by Jane Fischer
Learn more about Joubert syndrome
ECLC of New Jersey: the school for students with disabilities that Suzy attended for preschool and high school
Maplebrook School: the school for young adults with learning differences that Suzy attended after high school
Jespy House: the supervised living program for adults with disabilities where Suzy lived after Maplebrook
About Jane Fischer
Jane Fischer is a mother of three and a longtime advocate for children with disabilities. After teaching elementary school and raising her family, she went back to school for a master’s in special education and spent 25 years as a learning consultant, helping families navigate the special education system. She founded and was the first president of Parents and Professionals for Exceptional Children, a special education PTA, and served on the board of trustees of ECLC, a school for children with disabilities. She is the author of If You Knew Suzy: Pushing Past the Boundaries of Never.
“Predictions are not promises. Nobody knows your child like you.”
Episode 48: Transcript
Coming soon.
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