As a Caregiver, I am very aware of the importance of taking care of oneself and connecting with others experiencing the same challenges. For me, the personal connections I make are just as important as any information or education.
My first observation, though, was the result of self-reflection. After spending 2 days in workshops where I had to really think while dealing with the crowds, noise, lights, etc., my brain grew tired, and I had to escape the stimulation at times. My observation was this is how my son, Jacob feels every day at school when he’s trying to learn while dealing with all his sensory challenges. Just before I had left, he was saying “my brain hurts” when he was describing what school is like for him. Reducing his academic expectations was one of the first changes I made when I got home, and he hasn’t said “my brain hurts” ever since.
The conference organizers were also intentional in bringing caregivers together for lunch on the first day where we had an opportunity to network and exchange ideas/information. I spoke with parents from BC, Alberta and Germany and heard stories of inspiration, successes and similar challenges no matter where we lived. BC and Alberta have been on the FASD journey far longer than Ontario and have implemented some great programs and models. In Ontario, we feel so far behind, but caregivers from the other provinces also struggle with access to service, the education system, the adoption system and consistent funding opportunities. If the collaboration that existed at this conference could exist at provincial and federal government levels, there’s an opportunity for better lives and outcomes for those with FASD, their families, communities, and our nation.
Let me first say that over the first two days, I had the opportunity to hear the FASD Change Makers open the conference and had the chance to interact with them. I was impressed, but by Friday afternoon after spending so much time taking in the research and science, my brain was done. So instead of listening to another presentation, I met Myles Himmelreich, an FASD Change Maker and speaker. He told me about the “Playing to Our Strengths: Peer Mentoring for Teens and Adults with FASD” session on Saturday. So, I decided to switch to this session instead and I’m so happy I did. Myles and Katrina Griffin, another FASD Change Maker along with Michelle Stewart and Krystal Glowatski presented a peer to peer mentoring project that they’ve been working on with the Assante Centre out of British Columbia. In the fall 2017, the Assante Centre began this program “where adults and youth living with FASD spent time together, learning about their disability, making friends, building community, and focusing on their strengths.” Dr. Michelle Stewart’s research “Playing to Our Strengths Improvisation Toolkit” was brought into the mentoring program using blended visual, verbal and experiential approaches, specifically improv. Myles and Katrina showed us concrete examples of these approaches. While I observed all this amazing work helping youth and adults understand their disability, I was more inspired by the ownership they take to live with FASD and making a difference using their strengths. I saw, in my head, my 19-year-old daughter embracing this type of group to understand her disability, own it and live her best life. By the end of the session, I was in tears. Not tears of sadness or fear, but tears of joy, hope, great-fullness, anticipation and a desire to bring this program back to Ontario. Six weeks later, that experience still makes my eyes well up with tears. I’ve reached out to the Assante Centre, spoke with our Rural FASD Support Network executive and are finding ways to raise money to bring Myles, Katrina and this amazing program to rural Eastern Ontario. It was the highlight of the conference for me!
If you’ve never been to the International FASD Conference in Vancouver, I highly recommend it! Come prepared and take your time to digest all the information afterwards. Next year’s conference on April 22 to 25, 2020 at the Hyatt Regency in Vancouver promises to be great as it will have more for adolescents and adults living with FASD and their caregivers. I know Rob and I hope to bring our kids and enjoy all that they have planned.
Thank you to the FASD Change Makers, CanFASD, University of British Columbia and all the researchers, organizations and volunteers that put this event on. It was more than I expected and has inspired me to move forward on our advocacy and support work that we’re doing with the Rural FASD Support Network.