Drumming Heartbeats for FASD Awareness Day

Posted byAbPosted inADHD, adoption, FASD, Parenting, Resiliency, TorontoTags:, , , , ,

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.” 😆

38 thoughts on “Drumming Heartbeats for FASD Awareness Day”

  1. Pingback: Story of My Life – My Life With T

  4. I loved so much about this post – these two lines stood out – “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.”

    “T changed our world and we’re gonna work with him and others to help change the world.”

    I had no idea that CN tower was lit to celebrate awareness of FASD- I wonder what is done in the states –

    And your ending made me chuckle! Nice try, T – Great essay, AB

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    1. Thank you, Vickie! It really is just one part of him and I have to remind myself of that. I know you can relate with Jess’ journey too. 💕

      It’s amazing how many monuments are getting lit up in red from around the world. Thanks to the work of tireless advocates all around us. 🙏

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  6. “Not broken, nor do they need fixing.” I have just been reading accounts of African societies, written by Caucasian indwellers in the 1950’s. They describe a societal perspective in which what we see as deformations were seen then as simply part of that individual’s uniqueness, as we now see the number of branches on any particular tree.

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  7. Glad to hear that T had a great time at the event as well. I couldn’t help but laugh about how he walked into the advertising board. Awww. And how cute that he made friends with all the dogs. It’s great how there’s more awareness of FASD Day and that the CN Tower was lit red in recognition.

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    1. Yes, I was like, uhh, no more happy hour for you. It’s why we’re here in the first place. 😆🤣

      This kid is so amazing with dogs now whereas a year ago he was so terrified of them. Just today, he went up to a woman with a dog and asked if he could pet her (the dog, not the woman 😆) and then he hugged the dog. So cute.

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      2. Not if the cats are still here. I’ve actually reached out to a paw therapy program to see if they do 1-1 visits and fingers crossed we can make it work!

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  8. It gave me goosebumps to read that buildings will be lit up across the globe to recognize FASD Day. Wow! It’s truly incredible what can be accomplished when a small group of people who care come together, and what a gift it is to T that you’re so involved, and that he can see that. 🥰

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    1. Thanks Erin. It’s amazing how this movement is gaining traction and so nice to see it growing each year. Thankful for the community of advocates that made this happen and proud to do our small part to help advance the movement too. 🙏

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  9. Such beautiful pictures of your city. I love your observation that “with the right supports, they can thrive.” No doubt you and your hubby are great supports and this day of marching, community building, and awareness making is just one great example.

    And I’m still giggling about the day off. Good one, T!

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    1. Thanks Wynne. It was a wonderful day. As we were walking, I was telling the hubby that it was nice to be back downtown even though we’ve moved away into the suburbs. The energy is different.

      And yes, nice try but no cigar, T! 😆

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    1. Thanks Diane. I’m thankful for the organization putting this event together. 💕🙏 T got over the sign incident quickly and it still makes me laugh thinking about it.

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  11. It’s very encouraging indeed to see the level of support cities in different countries show to people with FASD. Unfortunately, it’s not something most people in my part of the world are aware of yet, but hopefully in the near future FASD Day can be celebrated globally. By the way, nice try, T! 😂

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    1. Thanks Bama. One story and one person at a time is how change works. Most of my Asian family are not aware of FASD either so I’m thankful to get to do my part.

      And yes, nice try but no cigar, T! 😂

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    1. Thanks Brian. Although T didn’t sit still for most of the speeches, I do hope he felt part of a larger community. One of the older teens who participated noted that and it’s why I’m so thankful for community events such as these. 🙏

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    1. Thanks Vicki. The tshirts were made by high school students in an innovate FASD-informed classroom run by the school board with Surrey Place. Good cause and approach. 🙏

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    1. Thanks Jane. It was the first event and what I hope will become an annual event. So heartening to see the awareness grow with each successive year.

      His awareness is high indeed! 😆

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