FASD

Winnipeg Free Press - PRINT EDITION

It starts with diagnosis

Clinic pinpoints type of FASD, points to treatment

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On first glance, he's a boy like any other. He's working on his Justin Bieber haircut. He could play Call of Duty: Black Ops all day without a break. He's not crazy about school.

But he's three or four years behind in class, can't focus for more than a few minutes at a time and has been on a cocktail of drugs such as Ritalin without success.

"If you give him two pencils, he'll go like this for hours," said granny, air-drumming with her fingers on the table.

The boy's mother consumed as many as a dozen drinks at a sitting when she was pregnant with him. Today, after years of forging ahead on their own, the boy and his grandmother are at the FASD Centre to finish up three days of tests and find out, finally, the 11-year-old has fetal alcohol spectrum disorder.

"I should have done this earlier, is what I think," granny tells Dr. Sally Longstaffe, the clinic's medical director. "I thought, what more can I do? There's has to be something missing. That's when I thought FASD."

The FASD Centre, run out of the pretty brick mansion on Wellington Crescent known as the Rehabilitation Centre for Children, is the only place in Manitoba to obtain an official FASD diagnosis. It serves only children and teens.

Adults are out of luck, as they are almost everywhere in Canada.

And, despite a hefty funding increase a couple of years ago, it still takes months to see the team of experts.

The clinic gets 39 or 40 referrals a month and can only see about 16 kids. FASD doctors estimate 10 or 15 per cent of kids with FASD ever get a diagnosis, meaning thousands struggle along in the dark.

Pre-schoolers get in faster, usually within three to six months. School-aged kids and teens might wait a year or 18 months, especially if they can't get a psychological assessment done beforehand. There's a province-wide shortage of psychologists..

Among the dozens of families, kids and adults struggling with FASD who spoke to the Free Press in recent months, all said the diagnosis was a remarkable relief -- an "ah-ha moment," according to one foster mother. Finally, there's a reason, and a road map forward.

Besides putting a name to what might have been seen as plain bad behaviour or laziness, the team of experts at the FASD Centre are able to pinpoint which of the 10 brain domains have been damaged by alcohol. That helps teachers rejig curriculums and teaching strategies, parents learn better ways to parent and kids understand why they've had such a hard time. It might also open up funding for a teacher aide or respite for stressed-out parents.

****

Today is the third day of testing for the 11-year-old boy, who sits with staff in a deliberately beige and boring room with just a kid-sized table and chairs.

The boy has already gone through the battery of IQ, speech and occupational therapy tests, most of which are more like games. The psychologist found he is below or well-below age and grade level in almost all cognitive areas -- working memory, processing speed, verbal memory, reading, math. He tries hard but just can't focus, even with lots of exercise breaks and "fidget toys."

His language tests found that he ranked below 98 per cent of his peers, which is not unusual.

Now, it's the doctors' turn.

Longstaffe runs the boy through what look like goofy games but which measure everything from balance to motor skills to muscle tone, all of which might be damaged by alcohol in utero. Longstaffe has the boy stand on tip-toes, then on his heels, kick a ball and play a school-yard hand-slapping game. Longstaffe traces a number on the boy's outstretched palms and he had to name the digit, which he does with enthusiasm.

Except for one incident at school that got him suspended, his behaviour is normally pretty good, as it was all afternoon at the clinic. He was polite and cooperative, if not very engaged -- "flat," in the words of one clinician.

As Longstaffe asked about chores and favourite subjects in school, the boy offers bored, one-word answers, his hands over his eyes, frequently yawning. His granny says he often doesn't fall asleep until 2 a.m. Insomnia is a common problem with FASD.

Once Longstaffe is done, a geneticist measures the boys head size, the size of his eyes and checks the divot under his nose -- three telltale markers of alcohol exposure. The boy looks normal, which is also not uncommon.

Then, as the boy plays in the sunny, round playroom down the hall, the experts gather around a small conference table to come up with a diagnosis. They each give a quick Coles Notes on their findings. They are all very consistent and it's pretty clear the boy is going to get a diagnosis of Alcohol-Related Neurodevelopmental Disorder, one of the types of FASD.

This is a process the team has been through hundreds of times since the clinic opened in 1999 and expanded in 2009. So far, about 1,800 kids have been assessed and 1,000 have received a diagnosis.

In 2009, the clinic started seeing teenagers.

As part of its recent expansion, the FASD Clinic got funding to hire seven coordinators in rural areas who help promote the centre's services, link parents with the team of experts and help set up the follow-up services. The coordinators will help create a network of speech experts, occupational therapists, pediatricians and other FASD experts in each rural area so kids don't have to travel to Winnipeg for a diagnosis.

That's a few years off.

And the FASD community is still grappling with how to provide the same kinds of services for kids in rural communities that they might get in Winnipeg, especially when about half the clinic's referrals come from beyond the Perimeter Highway.

FASD services on First Nations reserves are almost nonexistent. Health Canada would not even respond to several requests for information.

****

The grandmother, an elegant woman who speaks matter-of-factly about her life and her grandson, is sitting in the exam room with Longstaffe and outreach and education coordinator Dorothy Schwab, listening to their evaluation of her grandson.

The grandmother is a survivor of the Indian residential school system who had her share of trouble with alcohol, a rough crowd and an abusive relationship as a young mother.

"That's how my children saw me," she tells Longstaffe and Schwab. "I passed it on."

She lost custody of some of her children, and one of her daughters -- the boy's mother -- is now a chronic alcoholic in her own abusive relationship.

Despite that history, which she readily shares, the grandmother is clearly a favourite among the clinic staff. Warm, poised, well-informed and stable, the grandmother is now an elder in her community and has cared for her two grandsons for most of their lives. That's a familiar set-up among families that come through the clinic.

Longstaffe and Schwab do more listening than talking, but they lay out the way forward -- meetings with the boys' school in an effort to get a teacher aide and some curriculum modifications, a way to finagle some respite, a future discussion about newer, better medications, a referral for language and occupational therapy, access to an eight-week crash course in FASD for the grandmother and many other to-do's.

Next up, the grandmother will repeat the same long process for her younger grandson, who also likely has FASD.

"Let's all get to work on these boys," she says.

maryagnes.welch@freepress.mb.ca

DIAGNOSIS DIGITS

472 -- Number of referrals to the FASD Centre in 2010, up 17 per cent.

200 -- Number of assessments scheduled in 2010.

76 -- Percentage of teens who got an FASD diagnosis.

63 -- Percentage of school-aged kids who got an FASD diagnosis.

37 -- Percentage of referrals from doctors or nurses.

34 -- Percentage of referrals from child welfare workers

9 -- Percentage of referrals from birth families, more than from schools.

-- Source: FASD Centre

Republished from the Winnipeg Free Press print edition March 26, 2011 J1

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