Family in crisis

Life for the Forget family of Sooke was not easy prior to the provincial government announcement that funding for autism treatment was to be cut. Since the mid-September announcement, life looks downright daunting.

Going anywhere with their two autistic children is pretty much out of the question.

“We don’t go out, we stay in our house and we hide,” said Trevor Forget. “Every time we go out it’s an absolute hassle. The kids have meltdowns in the middle of the supermarket. You get parents looking at you like you should have the kids on a leash. We take them to the pool occasionally. We get weird looks and the other kids make fun of them. It’s not a nice thing... it really isn’t. But we deal with it 24 hours a day, seven days a week.”

The family of four includes two autistic children. Both children have been receiving therapy from the Queen Alexandra (QA) Foundation for Children in Saanich.

Just over a week ago the Ministry of Children and Family Development announced cuts to the $5-million Early Intensive Behavioural Intervention program that helps 70 children across the province, 22 of those in Victoria. It will end in January in order to increase “equity” for all B.C. families with autistic children, said Children and Family Development Minister Mary Polak.

The program costs the government $70,000 per child annually. Other autistic children receive $20,000 for therapy. That will be boosted by $2,000 in April equalizing funding across the board.

Options for the Forget children, Nathan, 5 and Allison, 3, are limited because of their need for extensive therapy. Nathan, for example, has been diagnosed as severely autistic.

“There’s a bunch of people trying to advocate to have the decision overturned,” said Trevor Forget last week. “But there’s no word as of yet.”

Forget is a math student at UVIC and he has also been working part time as a chef at a local restaurant. All of the money he earns goes toward the bio-feedback therapy with a psychologist once a week. The fee is $150/hour for each child. They’ve been having these appointments in addition to the 40 hours a week they’ve been spending at the QA centre.

As far as the Forgets are aware they are currently the only Sooke clients at the centre. They know there are other autistic kids living locally but they don’t see them.

Along with their day-to-day challenges the Forgets worry about the long-term outlook.

“Now that the option (QA treatment) is over, what it means for us is that our kids will not improve. Once we pass away, there’s nothing left for them. They won’t have the training to survive on their own. These kids have absolutely no fear and no concept of society or anything like that.”

Both Trevor and his wife Kathleen insist the children have been making noticeable progress as a result of their therapy at QA. The initially non-speaking Nathan, who his dad says has the mental capacity of a six-month-old, has begun to build a collection of words he can understand and respond to. He has even made a start at verbalizing.

The parents are concerned that any gains will be quickly lost with discontinued treatment. With the cuts to the taxpayer-funded program Trevor says they don’t know what they’ll do.

Private treatment is a less than appealing option.

“We’ve been through it before and it just doesn’t work,” he said with a shrug.

Kathleen Forget said, “If there’s a parent at home with an autistic child they can do therapy with that child. But when you have two autistic children you can’t do one-on-one behaviour therapy...’cause they’re trying to kill each other all day. When they start they’re so aggressive. They’re constantly beating each other up and beating me and Trevor up.”

This is a serious problem and one that’s easier to understand by meeting the family. Allison, though just three years old, weighs in at a solid 60 pounds and is more than a handful to deal with when wound up.

“She’s got a low centre of gravity,” explained Trevor, “and she knows how to use her leverage.”

The kids get a synthetic melatonin at bed time, so the parents have some to try and collect themselves. Without the sleep aid Trevor says they’d be awake and active for about 17 hours a day. Not only that, but if the kids were to wake up before their parents there’s no telling what kind of situation they could get into.

There are no possibilities the family is unwilling to consider, including long distance relocation.

That the Forgets are getting by at all is a credit to their patience, perseverance and the love for their children. They, along with all the parents of autistic children who have been benefitting from the QA therapy, will be keen observers of what unfolds, and whether their needs may continue to be accommodated by the public heath care system.