Caring for people with FASD: from joy to pure ‘hell’

Jenny Jackson still chokes up when she talks about seeing her daughter, Crystal, for the first time. She was 17 months old and weighed only 10 1/2 pounds.

Jenny Jackson still chokes up when she talks about seeing her daughter, Crystal, for the first time.

She was 17 months old and weighed only 10 1/2 pounds.

Crystal was so small that when the nurse handed the baby to Jackson she could lace her fingers all the way around her rib cage.

She was told the baby was deaf, blind and would never walk or talk.

Two months after their first visit with Crystal, Jenny and her partner, Ray, privately adopted her.

At the time, they had no idea their child had fetal alcohol spectrum disorder.

That was 35 years ago and FASD was a term that had only been recently coined by a team of Seattle researchers.

“Back in the ‘70s there was nothing on paper to tell you how to take care of a child like this,” said Jenny, who has written a book about her experiences raising a child with FASD.

Crystal is in her mid-30s now and still lives with her parents.

She needs 24-hour care and will never be able to work or live independently.

Crystal isn’t deaf or blind and she is able to walk. But she does have trouble speaking and gets easily overwhelmed.

“I love her so much and guard her with my life,” said Jenny.

But trying to balance work and the needs of her daughter has always been a struggle, she said.

The Yukon government doesn’t offer parents enough respite money to adequately care for children with disabilities.

It took Jackson six months to negotiate just 18 days of respite care for her daughter last year.

And the government doesn’t have a bank of respite workers on staff to choose from.

So it can be hard to find the right worker, particularly for the Jacksons, who live in Haines Junction.

“Crystal is 36 now and it’s very rare for me to be by myself and have a cup of tea at a restaurant,” said Jenny, who is 64.

“If I sign my daughter over to the government because I can’t take care of her, there’s money there for staff and everything she needs. But why isn’t there some money for parents? I’m doing the work of how many people to take of Crystal for one month?”

Last week the government announced it will introduce tax breaks to parents of children with disabilities.

The incentive won’t be too helpful to Jackson.

“What good is a tax break if a person doesn’t have income,” said Jackson. She’s only able to work sporadically because of her daughter.

Sylvie Baril knows firsthand that kids with fetal alcohol spectrum disorder are being shortchanged.

The Whitehorse resident has two special needs children.

One is an adopted son with FASD who often ran away and was prone to hurting himself.

The government wouldn’t give Baril enough respite money to care for him. He ended up in a group home at the age of 15.

Baril’s other son has autism. He’s higher functioning than her other son and yet the government gave her more money for his disability.

Baril only received $380 a month to look after her son with FASD, who needed constant supervision.

No 14-year-old was going to do that job, said Baril.

So she and her partner hired a nanny from Ukraine to look after him when he was younger.

But after two years of paying room, board and salary for that person, they had to stop.

“I was working half my time to pay for someone else to look after my son,” she said.

She knows parents of children with autism who have full-time workers, paid for by the government. They cost about $40,000 a year.

These parents have fought hard to receive additional care but the inequality isn’t right, said Baril.

“It’s the same service. A child with FAS is not worse or better. Every parent with a child with a disability is struggling,” she said.

Keeping children in 24-hour government care costs much more than the $30,000 Baril requested from the government for respite, she said.

And it wasn’t any safer.

Her son escaped the first week he was in the group home.

Sometimes Baril would get a phone call from the home saying that her child had been missing for hours. Once it was for four days.

******

Judy Pakozdy is blunt in describing her experiences raising a teenage boy with FASD.

“It was absolute hell,” said Pakozdy, who was the founder and director of the Fetal Alcohol Spectrum Society of the Yukon.

“He had no judgment and he was desperate to have friends,” she said.

Like many people with FASD, her son was eager to please and was easily manipulated by other students at school.

“They’d encourage drinking and drugging and all sorts of things.”

She had to fight like “a son of a bitch” to get services for her son, she said.

Now he lives in B.C. where the government provides funding for a support worker.

He teaches dance and is doing fairly well for himself, said Pakozdy, who now lives in Ontario.

But he’s in his 30s and still has “teenage angst” about not having any friends, she said.

People with FASD have a hard time connecting with others in their age group. They don’t understand social rules or may behave in a way that people find inappropriate.

It can be heartbreaking to watch a child go through school without friends or the wrong kind of friends, said Deborah Fulmer.

Fulmer remembers throwing birthday parties for her daughter, Jessica, and not a single person showing up.

“She was really alienated by her peers,” said Fulmer, whose adopted daughter has FASD.

When Jessica hit her mid-teens she began disappearing for days at a time.

Once, she phoned her mother from Halifax.

“A guy paid for my plane ticket and I just took off,” said Jessica.

Like Baril, Deborah and her partner were overwhelmed by their teenager.

They approached Child and Family services and said, “Here you deal with her – we can’t.”

It was a hard decision but one that eventually paid off, said Deborah.

Jessica spent two years in a group home for youth. At the age of 19, she received a diagnosis for FASD. This helped Jessica and her family focus on the supports she needed in her life.

Jessica lives independently these days, but relies on help from her parents and extended family, particularly in raising her young daughter.

Baril’s son didn’t fare as well in the system.

Shortly after being placed in a group home, he wound up in jail for theft and mischief.

If the government had financially supported Baril to keep her son at home, she thinks she could have prevented him from ending up behind bars.

“Nothing like that happened when we had him at home for 15 years,” said Baril.

“We lost our child to the system.”

Jackson harbours her own fears about handing her daughter over to government care when she and her partner are no longer able to care for Crystal.

“No one can love my child like I can,” she said.

“It’s heartbreaking to think that there would be people watching my child on shift work. They’re there, they’re watching the clock and then they’re gone.”

In a group home setting, there’s continual changes – staff, timing and program changes – that people with FASD don’t do well with, said Jackson.

She’d like additional respite and support from the government to keep Crystal at home for as long as she can.

At the age of 64, Jackson is burned out from advocating for her daughter.

“It just seems like the government lets parents run themselves into the ground so that they come in broken-hearted and have to turn their adult child over to the great unknown and there waiting in the wings will be all these people with more full-time work,” she said.

“It seems so inhumane because we love and care for our children, do this from our heart and soul, and for someone else this is just a paycheque.”

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

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