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CAMH Stories Centre for Addiction
and Mental Health

Breaking the cycle of Fetal Alcohol Spectrum Disorder

This is the third feature in CAMH’s series on Fetal Alcohol Spectrum Disorder (FASD). September 9th was International FASD Awareness Day.

45-year-old “Betty” lives in Ontario’s Kenora district, northwest of Thunder Bay. She’s a foster mom who’s raised seven children ranging in age from seven to 24, six of whom have been diagnosed with Fetal Alcohol Spectrum Disorder (FASD). As part of her work, she also teaches others about FASD. For decades, she’s known the challenges that come with the disorder.

In fact, her experiences with FASD started before she was born.

Moment of realization

Betty knew her mom drank alcohol while pregnant with her. As a child, she grew up unable to organize things, struggling with her memory. But she didn’t understand the connection between the two until one day, as an adult, when she was sitting in one of her social work classes.

She was sitting in an auditorium listening to a brief description of FASD. She got up, left and went to the bathroom and looked at herself in the mirror.

“I was like, oh my god, this makes complete sense to me now.”FASD in Canada infographic
Betty is one of approximately one percent of Canadians who live with FASD. FASD covers a wide range of symptoms, including inconsistent memory and recall, decreased mental stamina, impulsivity and poor judgement, inability to predict outcomes. People with FASD can experience higher rates of mental health problems, imprisonment, substance dependence and problems with employment. Women who drink during pregnancy, but are not alcohol dependent, can also give birth to children with FASD.

Growing up, Betty faced many of those challenges. “Looking back, did I see the disability in myself? Absolutely. I started in school very, very disorganized. I was the kind of kid that forgot everything that I was supposed to. When I was 18 I hitchhiked to Toronto with no money, no plan. I worked at strip clubs. My life was basically a train wreck until I was about 25.”

She turned her life around bit by bit through education, going back to school and taking one course after another.

Betty remembers her mother, who also had FASD, struggling with alcohol addiction. Mom was abusive. “My mother was involved with mental health services her whole life. Four or five times a year she would be admitted to hospital for mental health treatment and get her meds stabilized.” When her mother was 45, a doctor told her she might have been “an alcohol baby”.

It wasn’t until that moment in her social work class that the pieces starting falling into place, that she could begin to place where her mother’s behaviour was coming from.

“It gave me a sense of understanding and peace. It made me realize my mother wasn’t just abusive and neglectful and self-centered. It made me realize that she, too, was living with a disability. It created an environment of forgiveness for sure.”

And then the children came

Both Betty and her husband have been exposed to alcohol prenatally, but do not have a diagnosis of FASD. They had fertility issues and decided to adopt and foster.

Starting in 1999, one by one, the children came, some who were only expected to stay one night and never left. Like their now 19-year-old daughter who arrived when she was five, and another daughter, now 23, who was eight when she showed up at the house that first time. Betty is friends with the mother of her seven-year-old boy. His mother has FASD and has also been diagnosed with cancer. Betty would babysit the child when his mom would leave town to get treatment. His mom developed alcohol dependence and he came to live with Betty’s family.

There are now two boys and five girls in the family, six of whom still live with Betty and her husband.

They ended up with more than they bargained for, with six of seven children having a diagnosis of FASD and another child who, despite not having an official diagnosis, was exposed to alcohol prenatally.

“I can honestly tell you I don’t know what it’s like to parent a child without FASD. I’ve never parented a child without a developmental disability,” says Betty. “It’s so different for every single one of them. I just think that an ability to be organized and remember things, that’s tough for all of them. And then it’s tough for me because I have to remember things for everybody.”

They have to make allowances to balance their lives. “I’ve had to learn to live life so I don’t have everybody involved in a whole bunch of activities. When we’re going to doctor’s appointments I just take a day off and we all go together and we make a family event of it. We can’t be involved in a ton of things. Our home life and evening time has to be down time. I used to have my kids in a lot of activities and they would say to me, ‘you know what, can we just stay home, can we just rest?’ I think that’s the key.”

And through it all, the family keeps the lines of communication open. All the children know about FASD and how their family is affected by it, and the dialogue allows for lots of shared and somewhat unexpected happiness. Betty recalls a recent vacation the family took.

“We were all at the airport and the airport guy says, ‘anyone with disabilities, you can come now’ and our daughter looks up and says, ‘that’s all of us, let’s go!’ We don’t take our disabilities too seriously. We all laugh at our issues.”

Breaking the cycle

FASD is frequently a generational occurrence in families because, as Betty says, “the disability in and of itself causes impulsivity and the inability to see anything abstract. Generally a woman with FASD who is pregnant only thinks about meeting their needs in the moment.”

One of the greatest gifts of their open family dialogue about FASD is Betty’s three grandchildren, none of whom are alcohol exposed. Her 17-year-old daughter gave birth to a son recently. “We take drinking and pregnancy seriously and we talked about it a lot when my daughter was pregnant.”

Her voice softens. “I’ve never looked after a baby my whole life that wasn’t alcohol exposed and he is so easy, so easy to please. She’s an amazing mother...and she’s very proud that she’s broken the cycle.”

With a lifetime of FASD experiences, it’s only natural Betty has a few things to say to people about it. “People with FASD have a right to live in a world that fits for them...and women need to understand the effects of alcohol on children.”

“I want them to know it’s serious. And children who have FASD become adults who have FASD and they do suffer,” says Betty. But she and her family are living proof that it’s possible to thrive.  

“It’s not a death sentence and you can still have a really good life”.

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