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Tell Me What It's Like
Stacy Raine
Raising a Child with Disabilities: Jane Fischer on Pushing Past “Never”
OCT 20, 202649 MIN
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Description
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.
“ Predictions are not promises. Nobody knows your child like you."
- Jane Fischer on Tell Me What It’s Like
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 go back and tell herself in that hospital room
Mentioned in this episode:
If You Knew Suzy: Pushing Past the Boundaries of Never by Jane Fischer
Joubert syndrome
ECLC of New Jersey
Maplebrook School
Jespy House
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