Home is an oasis of hope

Meet the Friesens, proof not all foster homes fail and not every kid with FASD falls through the cracks.

Les and Jennifer are juggling six children -- one biological child, two adopted children and three foster kids. They range in age from toddler to late teens, and four have FASD, each with their own roster of quirks and struggles such as sleeping problems, behavioural issues, developmental delays and learning disabilities.

"I sometimes feel like I don't even know what 'average' kids are anymore," said Jennifer. "When we see our friends' kids, I think, 'Oh my goodness, if our kids were sitting still like that we'd be rushing to the hospital!'"

One of the wee ones loves anything cold -- frozen food, snow -- but can't stand clothes. That's common for kids with FASD who are very sensitive to touch, light and smells. Summer was paradise for the boy because he could zip around the Friesens' acreage or climb onto his mom's lap in nothing but a diaper and didn't have to deal with snowsuits, which freak him out.

"We tried to make a rule that the diaper had to stay on," laughed Jennifer, who is thrilled her boy is now potty trained. "He doesn't seem to mind the underwear, but very rarely wears anything else at home."

When the boy came to the Friesens at just a few weeks old, he would whimper when touched, and he was floppy, with no muscle tone, a byproduct of the variety of drugs, alcohol and sniff he was exposed to before birth.

"He curled up in the fetal position with his eyes pinched shut for a couple of days," recalled Jennifer. "I think just the reality of life was too much for him."

One child was among 10 damaged babies born to a mother with chronic substance abuse issues, but perhaps the most worrisome for the Friesens is one of their middle children, a serious and clear-spoken boy with severe FASD who has signs of psychosis, aggression and even suicidal thoughts. Medications help only a little.

They've been told he may need institutionalization at some point for his own safety, but that's not an option for the Friesens, who argue that any services offered in an institution can be transplanted into their home.

Kids with FASD could be the child welfare system's biggest challenge. Behavioural problems mean foster placements break down easily. Foster parents often don't get enough training or support and kids get stuck in an endless cycle of family failure when they need structure and stability.

That's what makes the Friesens' model so unique.

Several years ago, they sold their business to become full-time foster parents and advocates for their kids, turning their sprawling acreage in rural Manitoba into a kind of carefully structured oasis. With a cool jungle gym in the yard, a wrap-around porch, an old dog who snuffles around and now a horse for their daughter, it almost has the feel of a B&B, except for the cast of aides, tutors, respite workers, physio, behavioural and occupational therapists and "talk-docs" who come to the house or get regular visits from the kids. The Friesens home-school some of the kids, experiment constantly with new techniques and programs to see what works and have become advocates in their community for more services for kids with FASD.

"We have a really sweet setup," said Jennifer, who credits supportive child welfare staff with much of their success. "When I think about a lot of the other foster parents out there, I feel bad for them. I don't think people truly understand how exhausting it can be until you live with it: the emotional exhaustion, worrying about my kids' future."

Jennifer says the long-term goal is to set up a structure for their kids that will survive and evolve as the children become adults, perhaps even a set of houses on the acreage where their kids can live independently but within easy reach of help. In the short term, it means creating a daily schedule of help that gives Les and Jen a second to go to the bathroom.

"Stepping into a puddle of urine on your kitchen floor while a little, giggling nudist is dumping shampoo on the bathroom floor, that's just some of what an average day can look like," said Jen.

The family plans everything from meals to shopping trips to stave off meltdowns. Which parent or helper will stay beside each child? What's the exit strategy if a kid feels overwhelmed? Each outing is a lesson.

Last year, one of their sons got into a scuffle with some other kids in a playground while Les turned away for a few minutes to watch his older boy's soccer game.

"It was a failure on our part," said Les. "To put him in a playground with peers without somebody right beside him, that was a mistake. Now we know."

They talk openly with the older children about FASD, about lingering anger they have at their birth mothers, some of whom are in occasional contact with the Friesens. They try to focus on the things the kids do well and avoid anything that might set them up to fail.

Even so, the kids notice their differences, said Jen. One son is so aware of his disabilities that his first questions to new friends are a search for common ground, a list of things both can do well.

"It breaks my heart. Even with all the focus we put on what he does well, he still is haunted by what he can't do."

maryagnes.welch@freepress.mb.ca

Republished from the Winnipeg Free Press print edition March 12, 2011 J5