Fetal alcohol syndrome students need tailored support, parents say
Program provides workers to help families dealing with the disorder
A Winchester couple with two adopted boys who have fetal alcohol spectrum disorder say those with the condition require unique, carefully tailored supports in the classroom.
Tracy and Eric Moisan’s boys, aged 9 and 14, have both been diagnosed with FASD. Their older sister, 17, has not been diagnosed, but her parents believe she’s on the same spectrum.
FASD results from a fetus being exposed to alcohol during a mother’s pregnancy; it causes brain damage, growth problems and short-term memory issues. The disorder affects people in vastly different ways, but it often leads to difficulties in school and problems coping with daily life.
“FASD, for someone who’s not informed about it, often looks to them like kids with really bad behaviours,” said Tracy Moisan, 47, a high-tech worker who has scaled back her career to care and advocate for her children.
Moisan said too many schoolchildren with FASD are being labelled as “kids with behaviour problems” or “bad kids,” when in fact many are simply overwhelmed by noisy, chaotic classrooms.
Her youngest son, she said, has sensory issues that make classrooms challenging. The hum of fluorescent lights bothers him, and a room with brightly coloured posters can induce anxiety.
“That environment is completely overwhelming to him,” she said. “That anxiety creates behavioural problems.”
At first, Moisan said, his school focused solely on those behavioural issues. Only after he was formally diagnosed with FASD did educators begin to examine how to create a better classroom environment for him. He now works with an educational assistant and leaves the classroom at specific times every day to give his sensory system a break.
“That works very much for him,” she says.
Her older son, in Grade 9, has a modified timetable, with one period every day devoted to working with a small group on organization, study habits and homework.
The family’s home life is based on routine, since anxiety is an issue for both children.
One son has a tent in his bedroom with stuffed animals that gives him place to retreat; their older son likes to bounce a basketball to settle down.
“These are amazing kids, they have a ton of strengths, but every day is hard for them,” Moisan says. “We deal with a lot of behavioural issues: It’s hard to regulate.”
Eric Moisan compares it to a shaken can of pop: “That’s what’s happening at school all day; when they get home, they open the can.”
The Moisans shared their experience Wednesday to highlight a program aimed at helping families like theirs. The FASD Worker Program provides supports to families with children and teenagers who have both been diagnosed with the disorder and those believed to have it (since a diagnosis can sometimes be difficult to obtain).
In April 2018, the province financed 34 FASD workers across the province; three were assigned to the Ottawa region.
In Ottawa, the program represents a partnership between CHEO and Citizen Advocacy Ottawa, an agency that launched the region’s first FASD resource program five years ago.
Program manager Nancy Lockwood said the FASD workers also educate teachers, social workers and justice officials about the condition, since it remains misunderstood. For instance, she said, teachers often apply the same approach to students with FASD that they use for those with autism. But that tends to be a recipe for failure, she said.
“FASD is a permanent brain injury, so people with FASD tend not to learn from their mistakes,” Lockwood said. “They can’t usually take information from one situation and apply it to another. Or they have trouble with memory.
“But behavioural intervention plans — the strategy used for children with autism — are based on being rewarded for doing the right thing. But if you have a brain injury that stops you from being able to do that, you don’t get the reward, and then you end up with more frustration.”
Moisan said the FASD Worker Program helps parents connect with the resources they need, and alleviates the responsibility of coordinating those services. “It lets us focus first and foremost on being their parents,” she said.
According to the Canada FASD Research Network, about four per cent of people in the country have some form of FASD.
The Moisans adopted their first two children 10 years ago, then welcomed their youngest son to the family when he was seven months old. They knew at the time that the children had developmental delays.
They pursued a diagnosis for their two boys — they suspected FASD — but it took them years, and a battery of speech, developmental, and neuropsychology assessments, to have the diagnosis confirmed by the genetics clinic at CHEO.
Said Moisan: “I think it’s important for our kids to know what’s going on: Here’s why your brain reacts differently and why you learn differently. It allows them to advocate for themselves, particularly in school.”
These are amazing kids, they have a ton of strengths, but everyday is hard for them.