As a parent who raised a child with a disability, I know firsthand the feelings of exhaustion and helplessness that shapes our daily reality. When my son was diagnosed with autism, the hardest part wasn’t his diagnosis. It was realizing I had to raise him in a world that saw his limitations rather than his potential.
Like every parent, my wish was simple: for my child to be accepted, to grow, and to thrive alongside his peers. But back in the 1980s, children with disabilities were often segregated from their peers, and programs would routinely turn us away because they “weren’t equipped” to support him. I spent countless sleepless nights researching, advocating, and fighting for my son’s fundamental right to simply belong.
Things have progressed since then, but what I learned, and what drives my work now, is that the barriers our children face aren’t inherent to their disabilities. They are constructed by systems that haven’t learned to see ability within difference.
This experience has given me deep empathy for parents of children with Fetal Alcohol Spectrum Disorder (FASD). In addition to living with the daily realities of supporting a child with a lifelong brain injury, these families also face the weight of the stigma and judgment attached to the disability— a burden that compounds their isolation and exhaustion.
FASD is a brain-based disability resulting from prenatal alcohol exposure, impacting critical executive functions including memory, learning, judgment, decision-making, among others. (Canada FASD Research Network) It affects over 1.5 million Canadians, but many remain undiagnosed, hidden by stigma and misunderstanding. Unlike other disabilities, FASD carries the additional judgment towards birth mothers, unfounded assumptions about choice, and misconceptions about prevention that create shame where there should be support, silence where there should be advocacy.
The consequences are devastating. Parents find themselves navigating systems designed for other disabilities, working with well-meaning professionals who lack FASD-specific knowledge. Their children’s unique needs— the distinct ways they process information, respond to environments, or regulate emotions— are often misunderstood as defiance, manipulation, or poor parenting. And when these young people age out of social services at 18, often without proper supports, they face increased risks of substance abuse, homelessness, and criminal justice involvement.
The economic impact is also staggering at $1.8 billion annually in Canada. But the human cost is immeasurable: families fighting to be understood, young people struggling to fit into a world that has made no space for their way of being.
In recognizing this gap and the costs of ignoring it, ABLE2 launched the Fetal Alcohol Resource Program in 2015 in partnership with Kids Brain Health Network (KBHN), the Children’s Aid Society of Ottawa, and CHEO to provide support to people of all ages with FASD and their families. The goal was simple but urgent: provide specialized, evidence-based support to people with FASD and their families, while building the knowledge of service providers across sectors.
Since then, we have seen what becomes possible when stigma is replaced with compassionate understanding. Families who once felt isolated now have robust networks of support. Educators, justice workers, healthcare providers, and social workers trained by FARP bring new insights, empathy, and evidence-based strategies to their work. And most importantly, individuals with FASD once dismissed as “non-compliant” or “difficult,” are finally being recognized for what they have always been: people with unique needs, considerable strengths, and the right to thrive.
I was privileged to eventually find the support that helped my son thrive. Today, he is supported to live the life he wants, and contributes meaningfully to his community. But I carry the sober awareness that this outcome isn’t available to every family, and I stand in solidarity with parents who simply want their children to thrive, to have meaningful and fulfilling lives, and to belong without condition.
September marks FASD Awareness Month, with this year’s powerful theme: “Everyone Plays A Part: Take Action!” I want to challenge all of us, as individuals, professionals, and community members, to move far beyond the comfortable realm of awareness, toward the work of compassionate understanding and systemic change.
That means recognizing FASD as the complex, lifelong neurological disability that it is. It means training professionals across sectors in FASD-informed approaches that honour both challenges and capabilities. Building communities that offer practical support without judgment, resources without shame. Most critically, shifting our collective narrative from blame to shared responsibility, acknowledging that creating inclusive, supportive environments isn’t just good policy or compliance, it’s a moral imperative.
Every child deserves to be seen not through the narrow lens of their challenges, but through the promise of their potential. Children with FASD aren’t ‘difficult’ and the question is not whether these children can succeed— it’s whether we’ll finally build the supports that allow them to succeed.
Beyond September, I invite you to play your part for families caring for individuals with FASD. Listen to their stories with empathy. Advocate for FASD-informed training in your workplace and community. Support policies that recognize FASD as a disability deserving of accommodation and support. Challenge stigma wherever you encounter it.
When we choose understanding over judgment, support over stigma, and action over awareness alone, we don’t just change outcomes for individuals with FASD, but we truly become the inclusive, compassionate society we claim to be.