Ottawa

'Every day is a fight': Ottawa rally lifts veil on life with FASD

People with fetal alcohol spectrum disorder (FASD) and their families and supporters rallied in downtown Ottawa today to let others know about resources they can access in the city.

About 4 per cent of Canadians have fetal alcohol spectrum disorder

Families and supporters of people living with FASD gathered on Parliament Hill on Sept. 9, 2018, before walking to Ottawa City Hall. (Krystalle Ramlakhan/CBC)

People with fetal alcohol spectrum disorder (FASD) and their families rallied in downtown Ottawa today to let others know about resources they can access in the city.

Just under 100 people gathered at Parliament Hill Sunday — which is FASD Awareness Day — and walked to Ottawa City Hall for the FASD Awareness Walk.

They were looking to educate, talk about prevention and awareness, and support both those living with the disorder and the people caring for them.

Organizers said it was the first FASD walk in Ottawa in about 10 years. 

Joyce Hamelin is the mother of two adopted children with FASD. She wants other parents to know there's a supportive community in Ottawa they can reach out to. (Krystalle Ramlakhan/CBC)

'Would not change a thing'

FASD is an umbrella term describing three serious conditions that can happen when women drink alcohol during pregnancy. The result is often lifelong brain damage.

Joyce Hamelin shared her story of having two adopted children who live with FASD — one an adult, the other still living at home. 

"OK, this is where I can get tearful. I was devastated and every parent would be devastated to get this diagnosis because we know how challenging it is. But at the same time, I would not change a thing about my child," Hamelin said.

"He is funny … he is social, he loves animals, he's really creative," said Hamelin. "He is just the nicest kid." 

Hamelin said it's been difficult, however, getting proper help.

Her younger son wasn't diagnosed with FASD until he was a preteen, she said, and the other came to the conclusion himself when he was 24.

Hamelin said they struggled through the school system — in part because FASD isn't recognized as a disability but rather a behavioural disorder — but they're doing much better now that they know what they're dealing with.

A man holds a sign at a rally on Parliament Hill ahead of the FASD Awareness Walk in Ottawa on Sunday, Sept. 9, 2018. Just under 100 people took part. (Krystalle Ramlakhan/CBC)

Stigma, lack of funding

"Every day is a fight for school for these children and youth. [It's] so challenging and so difficult. So there were mornings that literally it would take me four hours and my husband … to get our son ready for school," said Hamelin.

Hamelin said it can be difficult to diagnosis FASD because it includes a wide range of symptoms.

Up to four per cent of Canadians have FASD, said Maude Champagne, a social worker and FASD coordinator with Citizen Advocacy Ottawa, one of the groups that organized Sunday's walk.

Champagne said that's higher than the rate of autism, and in the child welfare system, it's closer to 17 per cent. 

"There's a lot of stigma around FASD. So what that means is it's underfunded," Champagne said.

"So it's difficult for people to receive a diagnosis and to receive the support that they need in the future."

She said Citizen Advocacy Ottawa provides help in both English and French and can point people in the right direction for FASD-related services.

Maude Champagne, a social worker and FASD coordinator for Citizen Advocacy Ottawa, says help for the disorder is sparse because it's often misunderstood or misdiagnosed. (Krystalle Ramlakhan/CBC)

Local support networks

Hamelin said she also wants families to know they're not alone and that there's a supportive community of parents and professionals in Ottawa.

"Over the years I have just struggled, like so many of us have, trying to find the right supports and the right care to have our children included," said Hamelin. 

Hamelin also wanted to let people know that the community won't judge mothers of children with FASD. Many women don't even know they're pregnant during their first trimester, she said.

Some of the groups people can reach out to include Adopt4Life, the Fetal Alcohol Resource Program of Citizen Advocacy Ottawa, and the Children's Hospital of Eastern Ontario (CHEO).

The Ottawa Community Fund manages a fund specifically for people with FASD on behalf of the FASD Group of Ottawa. Hamelin also said parents should reach out to their children's schools for support. 

About the Author

Krystalle Ramlakhan is a multi-platform journalist with CBC Ottawa. She has also worked for CBC in P.E.I., Winnipeg and Iqaluit.