Voices of the Voiceless: Learning to live with FASD

Articles, Student Projects — By on May 29, 2013 10:00 AM

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By Krystofer Penner

Maia was 4 years old when she was diagnosed with fetal alcohol spectrum disorder (FASD). She remembers being confused and upset.

“My mom did what to me? What happened?”

In many ways, the anger the Winnipegger feels toward her mother hasn’t dissipated after more than 30 years.

Up to 80 per cent of children with FASD will not be raised by their biological parents, according to statistics from the Province of Manitoba. They end up in the child welfare system.

Maia was adopted when she was 1 year old, and her adoptive parents decided not to send her back to the adoption organization when she was diagnosed.

FASD is a physical disability that alters the brain of a fetus when a mother drinks alcohol while pregnant. It results in mental, cognitive, and behavioral disabilities.

Maia, for example, has difficulties with multiplication tables and counting money. A handful of change can stump her, and she even has trouble with bills.

“I can only understand multiples of 10,” she explains. “So if I have a five, 10 and 20 dollar bill, I won’t know what to do with the five.”

Like many people with FASD, sensory perception is important to Maia. She has a self-proclaimed obsession with down pillows and blankets, because she loves the way they feel. She often plays with things, such as jingling a pocket full of change, which people may see as rude.

“I need things to fiddle with, otherwise I’d go crazy.”

Academics were difficult for Maia, and she was bullied in school. Boys on her street would chase her, throw things at her, laugh, and call her names. One teenage boy used to pull down her pants and spank her every day.

Another, who also had FASD, raped her. She stopped going outside because she was afraid, and didn’t even know how to explain these things to her parents.

“It was really awful,” she says.

Forming and keeping healthy relationships is also difficult for Maia, a trait common to many people with FASD, according to the Government of Manitoba’s Healthy Child Manitoba website.

People with FASD can be compulsive and friends may feel they are being smothered. Maia says people often think she is stalking them, when in reality she simply does not recognize boundaries.

This often results in friends telling her she can only call on certain days or at certain times. Maia finds this offensive, but understands that people need space.

“It’s just difficult because I don’t have a lot of friends,” she says.

Maia copes with life through art. She writes stories about an alien crew of misfits that travels through the galaxy.

She also enjoys playing the bagpipes.

“I really like the drones and the feeling of the bag under my arm,” she says.

Still, she has difficulty reading music and mustering the required coordination to play the bagpipes, and is considering quitting.

“You try and try to get to the next level, but you can’t.”

A favourite activity is her work with the Manitoba Visions and Voices program, which lets Maia speak in schools about her disability. She doesn’t want other children to suffer the challenges of FASD because their mother didn’t know, or care.

“It’s like a life sentence for nothing,” Maia says. “You didn’t do anything wrong.”

Krystofer Penner is a student at Canadian Mennonite University. He wrote this article as part of his work in the course Journalism—Principles and Practices. “Voices of the Voiceless” is a class project that aims to chronicle the humanity of often-ignored people on the margins of our community.

 

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