‘A life sentence for nothing’

Diagnosed with FASD at four, woman warns others of the dangers of drinking while pregnant

October 9, 2013 | Young Voices
Krystofer Penner |

Maia was four years old when she was diagnosed with fetal alcohol spectrum disorder (FASD). She remembers being confused and upset. In many ways, the anger the Winnipegger feels towards her mother hasn’t dissipated after more than 30 years. “My mom did what to me?” she asks. “What happened?”

Maia was adopted when she was a year old, and her adoptive parents decided not to send her back to the adoption organization when she was diagnosed. She is lucky they kept her. Up to 80 per cent of children with FASD will not be raised by their biological parents, according to statistics from the Manitoba government, ending up instead in the child welfare system.

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 behavioural disabilities.

Maia has difficulty 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 says. “So if I have a $5, $10 and $20 bill, I won’t know what to do with the $5.”

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,” she says.

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 Healthy Child Manitoba website of the provincial government.

People with FASD can be compulsive and friends may feel they are being smothered. Maia says people often think she is stalking them, but she just doesn’t 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 their space.

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

Maia copes with life through her artistic side. She writes stories about an alien crew of misfits that travel 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. But she has difficulty reading music and mustering the required coordination to play, and is considering quitting. “You try and try to get to the next level, but you can’t,” she says.

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, about the effects of drinking while pregnant.

“It’s like a life sentence for nothing,” she says, adding that those who have FASD “didn’t do anything wrong.” l

The Voice of the Voiceless articles were written for Canadian Mennonite University’s Journalism: Practices and Principles course during the Winter 2013 semester. Teacher Carl DeGurse is vice-chair of Canadian Mennonite’s board of directors and assistant city editor of the Winnipeg Free Press.

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