Facing FASD together

Retreat workshop for parents and caregivers offers comfort and connection

Being the person who cares for a child or adult living with FASD can be a trying thing.

Events like Friday’s, where caregivers and parents can come together without their children to talk about their victories and struggles, can help ease some of that stress.

“It’s cool to connect caregivers with other caregivers,” said Shana Mohr, training co-ordinator with the FASD Network. “Today is all about empowering them and finding the positive.”

The network has been holding retreats like Friday’s in Saskatoon and Prince Albert for about a decade, but this year, decided to take their show on the road. Mohr travelled to Moose Jaw on Friday and was set to be in Estevan the following day. She said getting out to more communities makes it easier for parents to get to the workshop, though they have always been welcome at the ones held in Saskatoon.

“It helps when you realize you’re not alone in this,” Mohr, who herself has a daughter living with FASD, said. “I know what’s normal in our house is not what’s normal in other people’s houses.”

Sandy Overs attended the workshop, held at the Western Development Museum, but it was hardly her first. She told the Times-Herald that she has been to many over the years and that what keeps her coming back is the sense of connection with the other parents and caregivers.

“It’s that validation of some of the situations and challenges you’re going through. “And there’s the education piece as well. I always learn something new.”

About 10 people turned out for the retreat, which Mohr said was less than in other communities. While there is more going on in Saskatoon – in terms of workshops and support groups, particularly – she said Friday’s gathering could be the start of something new in Moose Jaw as well.

Still, compared to when Overs’ children were young, she said there is a lot more support and positive information out there, though accessing services can still be a struggle.

“It has to do with the expectations of individuals,” she explained, noting that those expectations should always be based on a person’s functional ability, not on their age. “It may change as they get older, but they’re always going to need some kind of support and services.”

Some of the discussion around the table was about the challenges facing caregivers trying to access funding for supports like occupational therapists and specialized instructors. Many programs need to be reapplied for every year and sometimes twice a year, creating a mess of paperwork and bureaucracy for parents to wade through.

While people living with FASD can have developmental, cognitive, and sensory disabilities, Mohr said they are not what they have been called in the past. Words like hopeless and broken have no place in how these people are conceived of, and neither does the stereotype that they are either easy targets or inclined towards criminality.

“As a parent, I feel like I always have to go to, ‘Don’t worry, she’s a really good kid,’” Mohr said. “I wish I didn’t have to make that reassurance.”

There is so much stigma around the disability that Mohr said she understands why some parents and caregivers are reluctant to tell people their child is living with FASD, and even wonders if she herself is every making things more difficult for herself and her daughter by being so open about it. But then, the good outweighs the possible negative.

“How do you change it unless you talk about it?” she asked. “When they’re supported and the disability is understood, they’re successful.”