September 9 is International FASD Awareness Day.
Fetal alcohol spectrum disorder describes the impacts on the brain and body of someone exposed to alcohol in the womb.
On Sunday, we participated in a community event at St James Park in downtown Toronto organized by Surrey Place, the wonderful organization that has supported T since he was 1, including completing his FASD diagnosis in 2022.
Lovely tshirts designed by high school students with lived experience. We got shirts for T and us.
It was great to meet self advocates Myles Himmelrich, RJ Formanek and Maggie May, the latter of whom is from Ireland, whose work I've followed and admired.
I joined Surrey Place's Family Advisory Council last summer. I don't have much free time but it was important for me to do my part to advocate.
It was nice to meet members and staff in person. I also reunited with T's developmental coordinator. It was cool to see her 8 years later!
Left to right: The amazing Myles Himmelrich (left), Maggie May and RJ Formanek.
The outdoor event, blessed with great weather, included inspiring talks by the advocate guests and an Indigenous drum performance.
T spent the event going from one dog and owner to another and kept himself nicely occupied.
We then joined 50+ people, with an Indigenous drummer leading our group, to march 2 km to the Ontario Court of Justice.
T did a wonderful job keeping up. I spent most of the walk talking with one of the staff psychologists who supported T's diagnosis. It was our first time meeting in person.
While T was marching and not paying attention, he walked face first into a standing sandwich board advertising happy hour at a pub.
I laughed at the irony of the situation, although the hubby had to pick up and carry our crying child.
Upon arriving, several people fastened a sign by the entrance to advocate for awareness and justice.
An important lesson I've learned in this caregiving journey is T and individuals with FASD are not broken nor do they need fixing.
With the right supports, they can thrive and we can increase understanding and reduce stigma.
Community is important for children and caregivers. We are thankful to be part of a growing community.
With each connection we make, we help T understand he is not alone. FASD is just one part of him; it does not define him.
There's a lot of work to be done with the school board, government and at the societal level.
Tomorrow night, CN Tower will be lit red to recognize FASD Day along with monuments around the world, as far as Australia (hello Australia! 🥰).
It is heartening to see awareness increasing globally. One step, one heart at a time.
T changed our world and we're gonna work with him and others to help change the world.
After the event, we walked to City Hall and enjoyed hot dogs and ice cream at Nathan Phillips Square.
As we were putting T to bed at night, we told him how proud we are of him.
Then he declared he was not going to school today. "It's FASD Day and I have FASD, so I'm staying home!"
"Nice try," I said. "You're still going to school." 😆
No comments:
Post a Comment