There is power and purpose in sharing stories. One voice can join a chorus to make a difference.
This week, I joined a director from the Surrey Place to make a deputation to our school board, the largest school board in Canada and one of the largest in North America.
Our goal was to raise awareness about FASD and to advocate for more awareness, supports and training for students and staff – including commemorating FASD Day every September and recognizing FASD as an exceptionality.
We had been planning to do this since Spring and our last two tries were postponed as the relevant committee meetings were cancelled.
It worked out for the best as the meeting we deputed at was the one attended by all school trustees, which are citizen-elected positions.
This was my second time making a deputation; the first was in January 2020 after T’s specialized program was cancelled due to budget cuts.
As a special needs parent, it is essential to be your child’s advocate.
It is exhausting and can be demoralizing as you often wonder if your voice is making a difference.
I believe it does. And when joined together with a community chorus, the message can be amplified.
I walked into the delegation room and immediately felt nervous.
It was a different room from my last deputation; larger, double the member seats and two large screens displaying members joining virtually, meaning I was being broadcast online.
I do public speaking for work, but the stakes were personal, so I felt antsy. I had a busy day at work so I didn’t get to practice.
I reminded myself I only had to speak for 2.5 minutes and I thought about T, the hubby, his CYW and school, and it calmed me down.
The meeting started and we were up first; the Surrey Place director and I had 5 minutes total.
She went over by a minute and made good points. I lost 40% of my time and improvised on the spot by skipping over chunks of my speech, while keeping an eye on the countdown on the big screen. I finished with three seconds to spare!
The reaction from the trustees reinforced why it’s important to advocate for FASD.
I thought we’d be met with crickets but we generated good discussion.
One trustee asked if we think it should be up to the Ministry at the provincial level and not the Board at the city level to determine if FASD is an exceptionality.
This is the frustrating ping-pong game politicians play to pass the responsibility.
So I said the trustees and board can advocate to the Ministry. What I wished I said, in hindsight, was the board can demonstrate leadership by setting a good example for other boards to follow.
Another trustee asked what is the impact of having a student with FASD in the classroom on other kids.
I responded by reminding him the board has an inclusive approach to education and that with the right supports, students with FASD can succeed.
Another trustee asked what is it that we hope to achieve with awareness.
I responded by saying that with awareness, we can build understanding and empathy. I shared that it wasn’t until 7 years ago that I knew what FASD was and I am often reminded just how little awareness there is of this invisible disability.
With awareness, training and supports, teachers can provide the right approach for students with FASD to help them thrive.
The pleasant surprise came when one trustee shared that in February 2020, a month after my first deputation, a motion was made to recognize September as FASD Awareness Month.
She was the co-author of the motion and I politely let her know that as a parent, I have not seen any action from the board to recognize this month and she agreed they need to do better.
As we walked out after our deputation, another trustee approached us and let us know that a message is sent to board staff during FASD month.
I let her know the message needs to trickle down to school staff, parents and students – and that schools need to visibly recognize this day – for this motion to have meaningful impact.
And so, the advocacy continues.
The amazing FASD coordinator at Surrey Place had gathered 30 statements from parents, students with FASD, service providers and medical experts and provided a package of printed statements to each trustee at the meeting.
We will follow up with the two trustees whom we agreed came across as allies to continue the advocacy conversation.
I’m not naive enough to think a 5-minute deputation will change the world.
But every contribution counts towards a larger whole.
If we just helped a few light bulbs go off in that room then I consider it a job well done.
And I think we did.
Transcript of My Deputation
Here’s a link to an edited transcript of my delegation. I edited identifying details out for privacy reasons.
T had grown taller! And you were brave!
Thank you, Serena! He is 3 inches away from being able to go on all the roller coasters at the amusement park. It’s his motivation to eat and drink more protein! 😆
There are some positive outcomes already from the deputation which I’ll share in a bit. Take care,
3 inches is easy to achieve, with adolescent growth spurt .
It takes courage to do what you are doing. To advocate for not only the one you love but for all others as well. In recovery there is a saying : “We learn to stand for something so we don’t fall for everything.”
When your heart and truth are in the right place it all works out as it should ❤️❤️good luck my friend
Thanks Danielle. This is very kind of you to say. I think and agree that we all win when we advocate for each other beyond our own circumstances. 😊🙏
Bravo!!!!!!!
Thank you!
It’s amazing that you made the effort to make a deputation to your school board to raise awareness about FASD and to advocate for more support. And nicely done with being able to improvise to make up for some lost time, especially considering how big the audience was. The questions from the trustees clearly demonstrates a lack of understanding and that more can be done. You’re probably right, a 5 minute deputation may not change things, but it’s an important step. You have to start somewhere and just hope it’ll gain traction. You should be proud of yourself.
Thanks Linda. Slowly but steadily. 🙂 I think learning to advocate and navigate within the political system is so important in the FASD advocacy journey. I learned a lot from this recent experience and it won’t be the last. 🙂
Hope you’re having a good week. A long one for me as I have to work this Saturday. Haha. But next week will be a 4-day week and even longer Thanksgiving weekend. 🙂 Take care!
Sorry to hear that you have to work this Saturday. But at least you have Thanksgiving to look forward to! I can’t wait to stuff my face with all the pumpkin flavoured desserts. Happy Friday!
Mmm that sounds delicious. One more week to go!
People like you , Ab, will hopefully start the change that is needed! Kudos for having the courage to speak up, I think I would have stuttered the entire time! Lol
Thanks Diane. There are so many people around the world doing the great work now and before me to advocate for FASD – and I’m happy to join the chorus. So much work to be done. 😊🙏 Stuttering makes us all human and relatable, so stutter away!
You never know where advocacy will take you and the impact it will make. I applaud your efforts!
Thank you Margie. It’s always worth a try for the very reason you said – you never know who is listening and how they can help make change happen.
What an important thing Ab, both for the FASD community as a whole but also for your family. You are giving T the best example of what dads (and folks in general) can do to speak up and out when recognition and change is needed. Applause to you and keep at it!
Thank you Deb! It’s funny you said we’re setting an example for T.
When we went swimming yesterday, the lifeguard was about to put the wrist band on him, to identify his age, and he spoke up and said to not put the sticky part on his skin like the lifeguard did last week because it hurt. He said it so calmly, politely and articulately. Made me proud. 😊
Wow, this is so awesome, AB! You just never know who might hear your words and make moves towards change. You’ve already opened so many eyes already!
Thank you Belle. I think you said it best, you never know who is listening, and hence you do your best with each advocacy moment. 🙏
Nice work, Ab! It is hard to feel like it matters especially when they haven’t even recognized FASD awareness month. But I love, “But every contribution counts towards a larger whole.” Yes! Good for you for showing up to do the work, the advocacy, and the follow-up. Amazing and impressive!
Thanks Wynne for the ongoing support. The interesting thing is they appear to have recognized it by sending internal memo. But it seems it’s only to a select group of staff. I’m hoping to clarify this. The important thing is to get the message out to staff in schools and to parents, caregivers and students. We’ll keep chipping away at it. 🙂
Congrats Ab! I realize there’s more work to be done & I’m glad you shared the transcript yet this is still progress. Please let me know what I can do from this end.
I wasn’t aware of FASD until meeting you and although I can’t disclose my new line of work just yet, because of what I’ve learned from you & doing my research, I’ve been able to advocate for families & teach them how to have the uncomfortable but necessary conversations w/ loved ones to educate & learn how to be supportive. Many of my clients think/feel their families don’t care when in most cases by not speaking openly about it intentions are often misunderstood.
Thank you Tammy for sharing this. There is so much more work to be done but we can all do our part to chip away at the larger whole.
I’m glad to hear bits and pieces about your work. It sounds very interesting and impactful. And I agree so much of it is about creating space for dialogue.