Jillian Dickens
Northern News Services

Iqaluit (Sep 12/05) - Jean Voysey knows the frightening reality of fetal alcohol spectrum disorder first hand.

As the student support consultant for the Kitikmeot region, she has spent all of her adult life working with children through the education system. She holds a masters degree in special education, and has an encyclopedia of FASD knowledge embedded in her brain.

But it wasn't until she fostered 12-year-old Anthony for two years that she really learned the true challenges FASD poses for both the person with the disorder and the people in the individual's life.

When Anthony first moved in, Voysey, who now makes her home in Kugluktuk, found life at her home almost intolerable.

It wasn't until she learned the skills to support his strengths that things became easier and even fun.

"It was a nightmare at first. I thought I knew him so well. Then I suddenly became a parent, which is a 24/7 job."

Unlike other disorders, FASD is 100 per cent preventable. The only cause is drinking during pregnancy.

On Sept. 10 - FASD Day - specialists in all aspects of the disorder focused on spreading the word that the disorder is preventable, and just as important, treatable.

Common symptoms are problems with learning, impulse control, co-ordination and physical disabilities such as heart and kidney weakness.

However, FASD effects everyone a differently.

Anthony was challenged in receptive ability. Although he was responsive to dialogue, he did not actually understand what was being conveyed.

"He was so chatty that it really masked the quality of his language skills."

So Voysey broke everything into small steps.

"Getting him ready for bed meant telling him to go upstairs, then I would chase after him to tell him to brush his teeth and so on."

He also was unable to make decisions, like what he wanted for breakfast. So the night before, Voysey would have him choose between either scrambled eggs or cereal, for example, and she would put a picture of his choice above the microwave for the morning. That way there was no going back and forth.

Another obstacle was that Anthony would flood the bath each time he tried to fill it.

"I was cross and he didn't understand why because to him the water just kept coming," Voysey explained. "Then I realized I had to put a big red mark around the tub showing where to fill the water to."

Voysey was learning to work with Anthony's strengths.

"I just had to get organized. He has very concrete visual skills so when talking to him I would have to use visual support."

Another challenge was identifying when Anthony was in pain because FASD sufferers have a high tolerance for pain.

"Once he had an ear infection so bad that by the time I realized it and took him to the doctor I looked almost negligent for letting it go on so long. But he never complained."

Support systems

After learning what supports Anthony needed, life became much simpler for both of them.

"I use the Go-Fish model of teaching a man to fish, he's fed for a lifetime; except when it's kids with FAS you go fishing with them every time."

Anthony, now 19, is living in a group home, but he and Voysey spend time with each other every chance they get.

As a student support teacher, Voysey hosts FAS workshops throughout the Kitikmeot. She says it is common for teachers to assume kids with FASD are being intentionally bad. Her job is to convince the teachers that the problem is a deficit.

"With the skills they realize what changes can be done."

For example, an open bookcase in a classroom will set off an FASD sufferer because clutter makes them unable to focus. A solution is covering the shelf with a cloth.

Pediatrician Dr. Ted Cormode is based in Ontario but comes to Nunavut for 12 days every two months to work with infants and children.

He says the biggest challenge is sending the message to mothers that drinking during pregnancy is the only cause of fetal alcohol syndrome.

"In the five years I've been coming up here I haven't seen a change in the number of pregnant mothers who have admitted to drinking during pregnancy," said Cormode.

"But besides those who are heavy drinkers or alcoholics, pregnant woman will stop drinking when they are told of the risk," said Dr. Cormode.

Another big challenge is the lack of resources to diagnose FASD and then to treat it through the person's life.

"The south has some of these resources but not nearly enough, and the North has almost none."

If a person with FASD is not treated and not given the support needed, they will likely take a tremendous toll on the community, said the doctor.

Sixty per cent of sufferers have run-ins with the law, 50 per cent have spent time in confinement and 50 per cent have engaged in inappropriate sexual behaviour.

"Without help they have terrible social skills and do not learn from experience. If they break into a house and get into trouble they could do it again the next day because they do not appreciate the fact that it is wrong," said Cormode.

"They need supervision forever."

Both Voysey and Cormode say Northern communities have a gift of unconditional acceptance of people with disabilities as compared to the south.

"It is the reality of the Inuit way of life. Everybody has to work together and everybody is equal," said Voysey.

But they both say it's a Catch-22 because there is less of a drive to implement the training and skills needed to improve FASD sufferers way of life.