Students learn to cope, triumph over FASD disability

Not everyone can say they’re a published author. But some kids with fetal alcohol spectrum disorder at a Winnipeg school can.

WINNIPEG — Not everyone can say they’re a published author. But some kids with fetal alcohol spectrum disorder at a Winnipeg school can.

One of them is Dani Kaye. Until she was in Grade 2, Dani was an elective mute — she chose not to speak.

“Back then, she just shut down,” said her older brother, Chris. “Now you can’t get her to shut up.

“She’s a typical teenager.”

That’s a ringing endorsement for the Bridges program at David Livingstone Community School which has helped to draw out the best in the Grade 8 girl with fetal alcohol spectrum disorder.

“I want to be a photographer or an actress,” she said, after posing for photos and autographing copies of a book written by her and other kids.

Living and Learning with FASD: Jilly’s Story, launched earlier this month, is believed to be the first book of its kind written and illustrated by kids living with its effects. It’s a frank discussion of what FASD is, how they got it and how they cope.

“I love it,” said Dani’s grandma and guardian, Shirley Cyr. “I think a lot of parents would be helped by it.”

Theresa Larabie is raising her granddaughter, Kaitlin, 14, who also authored the book.

“You need a lot of help and resources,” said Larabie, who said not enough is known about FASD. She’s grateful her granddaughter had the Bridges program to her help her learn how to cope — and to teach her grandma.

“She taught me how to work with her disability,” said Larabie.

“Simple things like colours, lights and activities and noises” can be problems for people with the disorder, said Larabie.

“I couldn’t take her to Wal-Mart.” At home, Kaitlin wouldn’t stay in her room. “It had wallpaper that was full of flowers,” said Larabie. Colours and patterns can be too much for those with FASD, she said. “They can’t relax.”

In the book, the kids talk about their brains being a tool kit, with some things coming easier to them than others.

Some of the kids are more expressive and sociable, but have a hard time with too many people talking at once, or with their motor skills like playing sports.

Dani and her co-author classmates in the program giggled as a DVD version of their book was played and they listened to the narrative they recorded back when they were in elementary school. It’s taken a few years and a few administrators to get the story they wrote and illustrated published with $5,000 funding from Healthy Living Manitoba.

But it’s been worth it, said Deb Thordarson, one of the pioneers of the Bridges program and the teacher who pushed for the book’s completion. “We’ve had such a positive response.” She said they’ve shipped 100 copies of the book to the Northwest Territories and sold another 250 copies at $20 a copy.

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