FASD Day in the Ontario Legislature

By: Karen Moore

When I first heard about the plan to take 15 families, which included children and youth with FASD, I thought, “Are you kidding me? We are going to travel form Lanark county to Toronto, stay in a hotel overnight and then spend the day at Queens park sharing the journey of FASD?!”

Why would that sound so incredible?

Well, people who live with FASD can find new environments very challenging. Spending FASD Day in the Ontario legislature would naturally have lots of people, lots of action and many new sensory experiences. Also, we were going to do all of this 5 hours away from home for two days and one night, and be responsible for a significant event at Queen’s Park.

No problem. We can do this, right? Right?! Well, we did it. Moreover, it was a magical, empowering and fantastic experience. Let us take it back to the beginning of our FASD Day 2020 journey…

As we came to the grounds of Queens Park, I felt nervous, worried and proud all at the same time. I saw the buildings of our parliament—the place where the country’s leaders made decisions every day that affected people’s lives. The place where we were hoping we would have some influence to help those with power understand our needs, our strengths and dreams so they could use their control to help the children, youth and adults living with FASD.

Within the next few hours, we were going to honestly and vulnerably share the realities of living with FASD. In doing so, we were going to provide a glimpse of our lives so people could better understand what we need for those living with FASD and their supporters. More importantly, we were going to ensure that every MPP there understood. They needed to know that we need more resources for diagnosis and mental health support. Also, we need more resources for transition support from children/youth services to adult services, education and employment support, support for caregivers, and specialized training for professionals.

They did not disappoint. On that day, as we sat in front of our nation’s leaders, the MPPs and staffers listened intently and with reverence. Children, youth and adults with FASD as well as caregivers were finally the experts of their journey, and we were able to share our stories with honesty, knowledge and hope.

After what felt like a slurry of thoughtful conversations and provocative questions, I reflected on our journey thus far. Stigma is a huge issue for people with FASD. Many people make assumptions. Moreover, these assumptions are often limiting, contrary and presume a reduced ability to be successful. This stigma adds additional stress and pain to those who are trying to navigate the world with an invisible disability.

Despite this, MPPs heard directly from the children, youth and adults living and thriving with FASD. They challenged assumptions and stereotypes about FASD just by being who they are and showing and speaking about the fantastic things they have done, plan to do and dream about regularly. They personified the exact opposite of the assumptions that are made in those stigmatizing interactions and shared their skills, talents, strengths, hopes and dreams. Their strength, courage and honesty challenged stigma head-on.

As a mom and a supporter of all those that joined us that day, I shed many tears. I shed some tears out of frustration for the lack of understanding, lack of services for diagnosis and lack of proper support. But many more for the pride and awe I felt when bearing witness to the strength, courage and power of the children, youth and families that participated in FASD Day 2020.

With that said, I do not know where our next steps will take us. Still, I do know that we were in fantastic company. I feel privileged to have shared this journey with all who are working to make things better for people with FASD and their caregivers. More importantly, as a parent with a child with FASD, I will continue to advocate, work for and hope for services and systems that will eventually meet the needs of my child.