CBC News: Rosetta Bignell’s life used to be very different from how it is now — and looking back, she’s proud of how far she’s come.
Growing up, Bignell describes herself as “a bad kid.” She had challenges at school. She threatened staff at her group home after being taken into child and family services for a few years beginning at age 12. She tried to run away.
It was also around that time she was diagnosed with fetal alcohol spectrum disorder (also known as FASD), which affects the brain and body of a person exposed to alcohol in the womb. Its effects vary, but commonly include difficulties with things like impulsivity and understanding consequences, the Canada FASD Research Network says.
After Bignell was diagnosed, she says she started seeing a therapist, but her challenges continued. Eventually, she was drinking almost daily and getting into trouble with the law. She developed Type 2 diabetes and became a heavy smoker. Bignell dropped out of school in Grade 10 and then, at 23, had a baby who relatives stepped in to raise.
She also struggled with anxiety, which people with FASD have an increased risk of developing, the Canada FASD Research Network says. “I didn’t get the help I needed, that I wanted,” says Bignell, now 41.
Safe place to call home
But in her late 20s, her path changed when she connected with Life’s Journey, a Manitoba organization that works with people who have neurodiversities including FASD and autism spectrum disorder.
Because of challenges recognizing and diagnosing FASD, it’s hard to know exactly how many people in Canada have it. The most recent data available from Health Canada estimates in 2019 the rate was about 0.1 per cent among children and youth, but much higher — 1.2 per cent — for Indigenous people in that age group living off reserve.
And while those numbers include the vast majority of kids and youth, they don’t include those living on reserves, in foster homes or in institutions.
The FASD research network says the actual prevalence rate across all age groups in Canada is likely closer to four per cent of the population.
Over time, Bignell built relationships with staff at Life’s Journey, who listened as she talked about her life and helped her learn how she could approach its challenges.
She also moved to Winnipeg from her home on Opaskwayak Cree Nation — a community about 520 kilometres northwest of the city — after the organization found her a place to stay through its residential program, which Bignell has now been using for over a decade.
Of the handful of homes she’s lived in, the south Winnipeg house she’s in now is her favourite. It’s quiet; a safe place to call home. In the summer, she tends to tomatoes and squash in the backyard garden, which helps keep her mind at ease. Residential support mentors are on shift most of the day to help Bignell and her roommate with things like getting to appointments and remembering to take medication.
Those kinds of tasks — which involve organization and planning ahead, or remembering how to do something, even if it’s been done before — are also among the challenges people with FASD can face.
Roughly 275 people use some kind of supported housing through Life’s Journey. Most participants’ rental costs are covered through provincial income support programs, though a few people pay rent adjusted to their income.
Bignell says she’s a different person now: more careful and caring, better at getting to the bottom of what she’s feeling and finding ways to cope. And thanks to the help she’s gotten with planning balanced meals and setting exercise goals — reminders for which are stuck on the kitchen fridge — she’s also healthier.
Two years ago, she was able to stop taking medication for her diabetes. Before that, she quit smoking. It’s been even longer since the last time she drank. Now she’s focused on online classes she’s taking through an adult learning centre.
It’s a transformation she says would probably surprise her younger self. “I’m much happier anyways, [than] what I was from before — much happier with my life,” she says. “I like me now. I love me more.”
Offering support, ‘no matter what that looks like’
Life’s Journey opened in 2005 to support people with FASD, including those transitioning from child and family services. The organization is also known as Miikana Pimatiziwin — a combination of Ojibway and Cree words that together mean “path to the good life” — and has expanded to offer housing, wellness and outreach support and Indigenous cultural services like drumming groups and ceremonies.
Its spectrum and rural connections programs also provide support for people with an FASD diagnosis — or a social history consistent with one — who aren’t eligible for government programs.
Today, roughly 585 people use the organization’s programs across Winnipeg, the southwestern Manitoba city of Brandon and the southeastern city of Steinbach. Participants don’t need a full diagnosis to access its services.
And because the effects of conditions like FASD vary so widely, so do the experiences of each person.
Some have challenges with executive functioning, including organizing their thoughts or performing daily tasks. Many struggle to do things like budget money. Others contend with issues like homelessness, addictions or involvement with the justice system, says Nicole Cruickshank, who runs an outreach program at the organization.
But whatever circumstance a person is in, the goal is always the same: meet people exactly where they are and help them get to where they want to be.
“We really try to make sure that people understand that we’re here to support them, no matter what that looks like,” Cruickshank says.
For some participants, that support comes through Indigenous spiritual care services, which can be the first time they’re able to connect with their culture.
About 80 per cent of the organization’s participants are Indigenous, and many were separated from their biological family by the child welfare system, says Debbie Cielen — the nookomis, or grandmother — who runs the Indigenous spiritual care services department.
In Manitoba, about 90 per cent of the roughly 10,000 kids in care are Indigenous. One 2014 study suggests kids with FASD could make up a disproportionate percentage of those in care in the province.
Cielen, whose spirit name is Mino Gaagii Kido Mikinak, or Good Talking Turtle, says part of her work is also to build trust and create an environment where people feel comfortable sharing what they’re going through, even — and especially — if it’s something difficult.
She says it’s crucial “that participants not be afraid to tell us that they’re struggling, and that they’re not perfect and that things are gonna happen.” “They’re learning, just like all of us.”
Building trust
David Fehr was taken into the child welfare system at age six and diagnosed with FASD a few years later. Fehr, whose biological mom is from Sandy Bay Ojibway First Nation, says he’s been able to connect with his culture over the last few years through Life’s Journey. He participated in ceremonies and was given a spirit name: Strong Talking Wolf, or Zoongde’e Gaagii Kido Ma’iingan.
But that relationship took time to build.
By the time he connected with the organization in Winnipeg a little over a decade ago, he felt like he’d had to fight his way through life, from being picked on at school, to bouncing between a dozen foster homes in a year after being apprehended, to being homeless after aging out of the child welfare system.
“Nobody knew how to deal with me,” says Fehr, now 32. “It was mainly the anger and just wanting to know more about it. Like, I got diagnosed with something … not even knowing what it was.”
He had also learned to be wary of his tendency to trust people, which got him in trouble more than once — including an incident where he ended up in jail after getting caught up with the wrong person and breaking into a house.
On top of having challenges with impulsivity and understanding consequences, people with FASD can often have difficulty with judgment, which the Canada FASD Research Network says can increase a person’s risk for involvement with the justice system if their circumstances aren’t understood and addressed.
Fehr says he started drinking to cope with his feelings, a habit that partly contributed to repeated stints in jail over a couple of years. But for Fehr, jail was also something he could rely on for meals and a schedule.
Outreach head Cruickshank says identifying the root causes of people’s challenges — and figuring out which purpose their behaviours or habits are serving in their lives — is key to helping them uncover their priorities and what’s really important to them. “It’s [about] kind of digging through that to find out what that is, and really trying to nurture that to help that grow,” she says.
As Fehr started to uncover those priorities for himself, he says his life changed. He got back on his feet following his last release from jail a few years ago, and reconnected with his biological mom and sisters. He found work through Life’s Journey, helping with maintenance and cultural programming. More recently, he stopped drinking.
“Just talking one-on-one with people, I found, was the biggest coping mechanism,” he says.
Access through understanding
Sometimes people with FASD only get connected with needed support once they’re already involved with the justice system. In a way, it’s their last chance once every other mechanism in society has failed, Cruickshank says.
But there are also challenges connecting people with support before it gets to that point, she says. Many don’t have a clear understanding of the resources available for people with FASD or how to navigate social services.
There’s also still stigma around FASD, particularly for mothers — which makes some hesitant to seek an assessment for their children. And alcohol use during pregnancy itself isn’t actually the problem, Cruickshank says, but a symptom of larger issues like trauma and addiction.
“It’s really unfortunate, because it provides a barrier … to receiving that diagnosis and receiving treatment,” Cruickshank says. “But historically, we don’t treat the mothers very well when they do come forward.”
And that treatment rooted in understanding and non-judgmental support can make all the difference.
For Bignell, it’s helped her get to a point where she’s working on her education with the hope of one day finding a job and supporting herself.
For Fehr, it’s meant reconnecting with his family — including newly found nieces and nephews — and thinking about what he might like to do next, like going to school to become a support worker.
“This way I can reach out [with] my story, maybe, to somebody else,” he says.
“I want to help people, is what it comes down to.”
About the Author
Caitlyn Gowriluk has been writing for CBC Manitoba since 2019. Her work has also appeared in the Winnipeg Free Press, and in 2021 she was part of an award-winning team recognized by the Radio Television Digital News Association for its breaking news coverage of COVID-19 vaccines. Get in touch with her at caitlyn.gowriluk@cbc.ca.