'We are citizens," says Tom Wilkinson in his slightly halting voice. "People with FAS have a right to a decent life."
At 23, Tom is a tall, skinny young man with cropped blond hair and very good manners. To look at him, you wouldn't know he was poisoned before birth by alcohol. He has FAE, fetal alcohol effect, a milder version of the full-blown syndrome, FAS. He's one of the lucky ones. He's been properly diagnosed and his family is devoted to him. He's not in jail or on the streets. Yet.
"I want to reach a goal, to be able to live on my own some day," he explains. His goal is to raise money for a group home and treatment centre for people like him. It would be Canada's first.
The need is urgent. There are tens and tens of thousands of people like Tom. They make up 40 per cent or more of the people who fill our jails. In the right environment, they can thrive. Without it, they're sentenced to a lifetime in the underclass. "We either get locked up in prison or go to an institution," he says.
I asked him to describe a bit of his life.
"It's hard to understand what people are talking about sometimes." When he was younger, he often ran away and got in trouble with the law. "I stole from a store and got charged with stealing. I wrecked somebody's car. I got charged with an assault."
Tom has worked hard to stay out of trouble. "They take the charges away if you've been good for five years," he says proudly.
Tom's parents, Jill and Joe Dockrill, adopted him when he was 3. Although he came from a severely abusive and neglectful family, they were told he was a normal, healthy child. It took them years to learn the truth.
"He was very destructive," says Jill, who is a cheerful, relaxed and clearly loving mom. "He tore apart his Tuff Stuff fire engine. He'd bite himself, bite his older sister, bite me. He would eat till he vomited. At first, I thought, well, he's a boy, and that's how boys behaved."
Then Tom reached kindergarten. The school told her he was out of control.
What came next is a common story for such families -- an endless, futile round of doctors, drugs and diagnoses. Tom was said to suffer from hyperactivity, or CP, or attention-deficit disorder. Tom was so disruptive that their doctor advised his parents to return him to Children's Aid for the good of the family. "We figured we saw 40 professionals by the time he was 13," says Jill.
The answer came by accident. One evening, she saw a movie on TV called The Broken Cord,the story of an adopted child with FAS. She got the book and took it to her doctor, and he located an expert on FAS who finally diagnosed her son. "He was the first one who didn't blame me," she recalls. Understanding his condition also made a world of difference to Tom. "I started believing in myself," he says.
Tom has an IQ in the low 70s. He reads at about Grade 3 level, and has the social and emotional development of a six- to eight-year-old. "He's always had manners," says his mother. "Of all our five children, he is the most kind, loving, polite and nurturing." He even holds down a part-time cleaning job at Wal-Mart.
But like 80 per cent of sufferers, her son can't live independently. "Tom would go out and buy 50 CDs rather than eat," she says. He's so trusting that anyone can take advantage of him.
Until now, Tom has had a one-on-one social worker at his home for 30 hours a week. One weekend a month, he went to stay at a residential home that offered respite care for families. Those services are in jeopardy now because of provincial funding cutbacks. One day, Tom's parents will be gone, too.
Last year, Jill hatched the idea of raising money for a group home. She sent out 94 packages to breweries and distilleries asking them for donations. She figures they helped cause the problem, so they should help solve it. All she got back was one $1,500 donation from Bacardi.
Tom was crushed. Then he saw a story about a girl who had rollerbladed across the country to raise money for cancer, and he volunteered to do the same. Rollerblading wasn't practical (he has a balance problem), but walking was. So Tom, his mother and his Aunt Pat devised a fundraiser called Tom's Walk, which is taking them across Ontario from their hometown of Belleville to Windsor. They're halfway through. Along the way, they're knocking on the doors of breweries, wineries, distilleries and city halls to make their pitch and raise public awareness. The brewers' association turned them down, but Spirits Canada came up with $5,000.
FAS and FAE are a human and social disaster of staggering proportions. They are the only birth defect that is completely preventable. Prevention efforts are in their infancy. Meantime, we have a choice: make a home for people like Tom, or pay and pay and pay the price.
"We think we're just as good as anyone else," says Tom. "We deserve a shot."
Tom's Walk: