Jessica Fulmer graduated from high school two weeks ago.
It’s no small feat for the 25-year-old Whitehorse resident. She has fetal alcohol syndrome.
But she didn’t know that when she dropped out at age 17. She hadn’t yet been diagnosed.
This much Fulmer knew: She was easily distracted and easily overwhelmed.
Peers teased her. “Teachers told me I couldn’t to it,” she said.
So she dropped out. But, rather than give up, she spent seven years upgrading at Yukon College.
Now, she finally has her high school equivalency certificate.
At age 20, Fulmer was finally diagnosed with her condition. It helped explain the challenges she’s faced.
It’s been nearly 40 years since doctors established that maternal consumption of alcohol produced a variety of birth defects. Today, the broader category of fetal alcohol spectrum disorder is often used to capture people who suffer some, but not all, symptoms of FAS.
Fulmer has full-blown FAS. Her biological mother gave her up shortly after she was born.
But she’s higher functioning than many people with the disorder. In 2008, she received her driver’s licence - something that many people with FAS never receive.
Fulmer works for her adopted father, who owns Fireweed Home Comfort. She helps fold and deliver flyers and with office administration tasks.
Fulmer credits the love and support of her adopted parents for helping her cope with her challenges.
Fulmer has taken to talking to high school classes about her condition. She worries that misconceptions remain rife.
There is no cure. “You can’t grow out of FAS,” said Fulmer.
And Fulmer’s living proof that people with FAS have strengths of their own. She’s an accomplished swimmer and biathlete. She loves to Ski-Doo and waterski.
Many Yukoners with FAS don’t fare so well. They become entangled in addiction, mental illness and criminal behaviour.
And once they enter Yukon’s justice system, they have a tough time wending their way through appropriate government channels for help.
The Fetal Alcohol Syndrome Society of the Yukon helps with this. Mary Amerongen, 66, is an outreach worker.
Once, she managed social housing in Edmonton. Part of her job involved evicting tenants.
“Looking back, some of the people must have had FASD,” she said. “They needed different supports than we had in place.”
Today, her job is to provide some of that support to clients in their dealings with social assistance staff, justice workers, landlords and employers.
But the society’s goal is to encourage their clients to become independent, so that eventually, they can fend for themselves, like Fulmer.
“We give out a lot more bus tickets and do a lot less driving than we did,” said Amerongen.
Amerongen does a lot of paraphrasing and translation for clients.
Lawyers tend to use big words. She remembers one who tried to simplify, but still overwhelmed the client.
“First she said, ‘He’s nice, isn’t he.’ Then she said, ‘What did he say?’”
But lawyers and judges are willing to adapt, if given direction. Amerongen once gave a lawyer a handout with advice on how to slow down and use simple words.
The paper was circulated in court. It changed the whole proceeding. Even Justice Ronald Veale took note.
“He was working so hard to be clear, so the client could follow what he was saying,” said Amerongen.
No one knows how many Yukon residents have FASD. But the Department of Justice has launched a study this year to find out.
Diagnosis is complicated and expensive. It requires a team of doctors, psychologists and occupational and physiotherapists, who visit the Yukon from Alberta each year. The territory is considering creating its own diagnosis team.
“We really feel there’s a need for more diagnosis,” said Mike McCann, FASSY’s executive director.
It costs about $5,000 per diagnosis. The territory spends about $50,000 annually on diagnosis, said McCann.
That’s money well spent, if it helps keep Yukoners out of the hospital and courts, he said.
FASSY has approximately 40 clients. It has three outreach workers in Whitehorse and one in the communities, as well as a prevention education worker, an office assistant, and an executive assistant.
The organization holds about six education workshops in the communities each year. Their key message is that there’s no safe amount of alcohol to consume while you’re pregnant.
Contact John Thompson at
johnt@yukon-news.com.