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Book tells FASD kids' stories

Students learn to cope, triumph over their disability

By: Carol Sanders

21/11/2009 1:00 AM | Comments: 9

Grade 8 David Livingstone student Dani Kaye proudly shows off a page she drew in book published by FASD students. It's already sold 250 copies and 100 more are being shipped to the Northwest Territories.

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Grade 8 David Livingstone student Dani Kaye proudly shows off a page she drew in book published by FASD students. It's already sold 250 copies and 100 more are being shipped to the Northwest Territories.

Not everyone can say they're a published author. But some kids with fetal alcohol spectrum disorder at David Livingstone Community 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 her school's Bridges program that's 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 Friday, 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.

Thordarson tells her students they're in the "gifted class" because they have lots of gifts to share, said school psychologist Al Kircher, of the Child Guidance Clinic.

Taking that approach draws out the best in kids and helps them build on their strengths, he said.

So far, the positivity of the Bridges program has worked for many kids.

Kaitlin, now in Grade 9, attends regular classes in high school and avoids negative influences.

"She separates herself from them and looks for good influences and friends," said her grandma, Theresa.

"She has to make her own choices," said Larabie. Kaitlin knows too well the heartache that can follow bad ones, she said.

"Look at her mom -- she drank and took cocaine for the first five months (of her pregnancy) -- and how it affected her. She lost so much."

carol.sanders@freepress.mb.ca

Republished from the Winnipeg Free Press print edition November 21, 2009 B1

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9 Commentscomment icon

hey there grubfoot you are so racist it stinks there is probably lots of non aboriginal children who have fasd as well but no one ever says any thing about them

There is no way to glorify FASD.

I can only imagine the strength and perseverance it took on the part of teachers and family members to get this book published. The families and affected children have taken a great risk in making their stories and names public.

In reading between the lines it is the grandparents of these children who should also be celebrated for taking on the responsibility of raising young, affected children when it should be their own children looking after them.

This book brings to light a hurtful truth with dignity and celebration....congratulations to all who participated and thank-you for bringing dignity to a hurtful disease.

I think there's a lot more to FASD than having to deal with "...colours, lights, activities and noises." The article gives us the proverbial tip of the iceberg. If the kids' recounting of how they cope helps them, or can help others... great! But there are may other facets to FASD and a multitude of "strategies," some helpful and some not.

This article is breath taking, I applaud the children who wrote this book, it takes courage and determination to reach dreams and these children should stand tall and proud, for doing so. FASD can happen to anyone regardless of race, or community. FASD should be talked about more, awareness is the key.

There are many programs and lots of information in place when it comes to preventing FASD. The sad truth is that it will still happen and continues to happen. This article is focusing on a completely different angle and one that is VERY important. I don't think that this story is glorifying FASD at all-it's telling the truth about what it's like to live with it. The fact is that now there are many children growing up within this spectrum and people need to learn how to deal with and relate to these children because they are different and life will continue to be a struggle for them. There doesn't have to be information on what type of children are more likely to have FASD. It doesn't change the fact that they have it. The children are the ones suffering and they are completely the victims. It's about time they have a little say in this whole situation. I see many cases where I live, what alcohol does to children. It's not fair and I'm happy that they have written a book about it. I can't wait to get one for my classroom.

Grubfoot (appropriate name) - what an incredibly hurtful and racist comment! If you knew anything at all about FASD you would know you are way off base. When we talk about FASD with our students, and others when doing workshop, we always include information about prevention. These children are here now and are true gifts to their parents, teachers and all who love them.
To the other people who asked - this book is available by calling David Livingstone School. Thank you for your interest. (Deb Thordarson)

Where can the public get this book?

=D

One thing missing from this article: how can I purchase a copy of the book?

There's talk about coping with FASD but what about preventing it? This story comes close to glorifying FASD. Considering that the majority of FASD cases occur in aboriginal families, especially those on reserve, there is an obvious omission here.

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