FASD means a struggle for life

Victor and Viola McIntosh's Whitehorse living room is crowded with pictures of their young children. They only get to see their kids once a week.

Victor and Viola McIntosh’s Whitehorse living room is crowded with pictures of their young children.

They only get to see their kids once a week.

Both have fetal alcohol spectrum disorder, a disability that makes it impossible for them to fully care for their children, who are all under 18.

But like other parents, Victor and Viola still worry about their teenagers smoking and skipping class. They look forward to their children’s birthdays and take their younger kids berry-picking and fishing in the summer.

Victor and Viola tried living with their six children – all of whom are healthy and haven’t been affected by alcohol – a few years ago, but it was too difficult.

There was too much cooking and cleaning to do. And with neither parent able to drive, it meant they couldn’t get their kids to where they needed to go. It was overwhelming.

Something as simple as refolding a newspaper for some people with FASD can be a challenge. Or making it on time to an appointment.

FASD is one of the leading cognitive and developmental disabilities in the Western world. It’s more common than Down syndrome or cerebral palsy and affects one in every 100 people.

And in the Yukon, there’s evidence it might be more common.

A cursory study done in 2000 by the Yukon’s medical officer of health found that 24 of the 378 babies born that year were affected with FASD. That’s more than six times higher than the national rate. However, no official count has ever been done in the territory.

FASD is often called the invisible disability.

If you were to walk into Victor and Viola’s home, you might not even know they have it.

Their apartment is spotless and cozy. They like watching old western movies on their flat-screen television. Both of them work. And like many people with FASD, they don’t look physically different.

But their lives have been a challenge.

Viola grew up in an abusive home. She was placed in a halfway house for teenage girls and constantly ran away. Victor’s parents drank a lot, a habit he later picked up as a teenager.

Things changed when Victor and Viola met each other in their 20s at a basketball game.

“We turned our lives around,” said Viola, who is now 40. “Everything changed when we had kids.”

That’s not always the case with adults with FASD.

Oftentimes they battle lifelong addictions to alcohol and drugs. They may live on the streets or end up in jail. And often, they’ll have children of their own with FASD.

It’s a cycle that’s all too common in the Yukon, says Judy Pakozdy, former director of the Fetal Alcohol Spectrum Society of the Yukon, who now lives in Ontario.

“If you look at some of the families in Whitehorse and in some of the other communities, you’ll find that they’re into their fourth, fifth and sixth generation of kids with FAS having kids with FAS,” she said in a telephone interview.

Having supports is one way of breaking the cycle.

Victor and Viola have had a support worker since they were in their 20s. Their worker helps them with their groceries, takes them to the bank and gives them rides.

When they needed to move in the middle of the winter because their neighbours partied too much and kept them up at night, they asked for help.

They had spent a month looking for a place to live. A friend picked up the phone and within a few days they had an apartment.

“The biggest challenge is housing for many of the people we work with,” said current FASSY director Mike McCann.

The Yukon has a lack of supported housing.

The non-profit society, Options for Independence, offers six suites for adults with FASD in downtown Whitehorse with 15-hour on-site support to tenants.

And there’s a smattering of group homes in the territory that help severely affected individuals with FASD.

But it’s not nearly enough, said Pakozdy.

“Homelessness is a big issue in Yukon and a lot of that is related to FAS. Violence, crime, all that stuff is because we didn’t look after these kids when they were little,” said Pakozdy, who has been working with individuals with FASD since 1973.

A 1996 study by Seattle-based researcher Ann Streissguth found that 80 per cent of adults with FASD are unable to live independently.

Pakozdy has seen what happens to people with FASD who don’t have proper supports.

“They’re in jail, they’re dead or living on the streets. Very few of them are living in safe, happy circumstances,” she said.

And even the ones who are still have problems of their own.

“It’s a struggle every day,” said 41-year-old Rick Sam, who has FASD.

“I don’t have the patience of other human beings. I have a short fuse.”

An angry outburst once led him to snap one of his beloved fishing rods right in half.

And he doesn’t always like to be around lots of people.

But he’s quick to point out his strengths.

“I bail people out of predicaments,” he said. And he’s helped “turn around business” at Lil’s Diner where he works.

He’s had brushes with the law and has spent three years in the Yukon’s justice system.

Following that, he was homeless.

But these days he maintains a quiet life, living alone in a cabin he built off the Long Lake Road.

“I look after myself,” he said.

He doesn’t drink and spends his summers fishing.

Like many people with FASD, he harbours resentment towards his mother for drinking while she was pregnant with him.

“It’s not fair to the baby because the baby has to live with that shit for the rest of their lives,” he said.

He was bounced through the Yukon’s foster system as a child and believes the territory’s child and welfare system needs to be drastically changed.

“They walk all over people, especially people with FAS who have children,” said Sam.

Victor and Viola have had their own struggles with the government.

Right now their children live with four different foster parents in the Yukon. They visit them once a week for an hour and a half. And they only get to see their 2 1/2-year-old daughter, who lives in a small Yukon community, once a month.

“I love (my daughter) so much I cry sometimes,” said Viola. “I miss her a lot. I just want her back in Whitehorse.

Victor and Viola never wanted their daughter to move .

” I said, ‘No’ to the lawyers,” said Viola. “They did it against our will.”

They recently found out that their other three children may be moving to southern B.C. with their foster parent this summer.

“We’ll never see those kids again,” said Victor.

“Me and my wife can’t afford an airplane down there.”

Victor and Viola would like to have all their children live with them again, however, they’d like that to happen in a supported setting.

The couple asked the government whether they would fund support workers to live with them and their children in one house. But the government said no.

They don’t understand why the government isn’t in favour. It’s frustrating, they say.

“We’re working really hard to get our kids back,’ said Victor. “When we get them back we need a house for all of them. With workers.”

This is the first of a six-part series on fetal alcohol syndrome disorder in the Yukon. The writer received assistance from the Canadian Institutes of Health Research for this series.

Fast facts on FASD

• Fetal alcohol spectrum disorder is often called the most expensive, most common and most preventable disability.

• FASD is an umbrella term that refers to a range of disabilities caused by prenatal exposure to alcohol. This includes the more severe fetal alcohol syndrome (FAS) associated with certain facial features, as well as alcohol-related neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD).

• Researchers have pegged the occurrence of FASD at one per cent of the Canadian population.

• Conservative estimate of the number of Yukoners with FASD: 338

• Percentage of individuals with FASD who have experienced verbal, physical and/or sexual abuse: 87 per cent

• Percentage of homeless people in Whitehorse who say they require supported housing: 24 per cent

• Annual cost of FASD to Canada’s health and education system (not including justice): $5.3 billion

(Statistics compiled from the Yukon government 2010 housing adequacy study; The Canadian Journal of Clinical Pharmacology, 2009; Statistics Canada 2011 Census; Journal of FAS International 2004)

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