From One Caregiver to Another on FASD Awareness Day

Posted byAbPosted inADHD, adoption, FASD, gratitude, growth mindset, ParentingTags:, , , ,

September 9 is recognized annually around the world as FASD Awareness Day and to raise awareness of fetal alcohol spectrum disorder.

This year, I was honored to be part of Surrey Place’s FASD Day event this recent Sunday.

The hubby and T also attended the event and T spent most of the event playing with another boy he has become familiar with through events hosted by Surrey Place.

During the panel, I was asked: “What advice would you give a caregiver new to the FASD journey?”

Here’s a video of my response (watch on Instagram):

We were also asked to each prepare short remarks before the panel. Due to time, the moderator did not prompt us to share them.

So I’m sharing them here instead. 😊

“Hi, my name is Ab., my pronouns are he/him and I’m the proud father of an amazing, bright, funny, kind 10-year-old boy with FASD.

I’m also a member of Surrey Place’s Family Advisory Council and thank you to today’s organizers for inviting me to be a part of this event.

It was nearly 10 years ago that we adopted our son after a 7-year journey through the CAS system. We didn’t know too much about FASD at the time.

I’m very thankful to our family doctor for referring us to Surrey Place after learning of our son’s medical history. We received a prognosis of at-risk FASD at 18 months and a formal diagnosis at age 7.

There were many tears and fears along the way, because of all the things my husband and I quickly learned and experienced about FASD.

But there were even more fun and happy memories. We are very thankful for our son in our life and do our best to live life with hope, humour, heart and adventure.

FASD Day, to me, is about raising awareness of a little known disability that impacts more Canadians than those with Autism Spectrum Disorder, Cerebral Palsy and Down Syndrome combined.

And yet, is often a source of misunderstanding, negative stereotypes, stigma and shame. As a caregiver, that is unacceptable to me.

And that is why we’re here today as a community – to raise awareness and to reframe the conversation about FASD.

I work in public libraries – and as my colleagues and I know and understand, especially during these uncertain times, knowledge is power.

In one way, knowing about our son’s prognosis and later diagnosis was hard in the beginning. Today, it provides us with a powerful tool to engage the world.

We just finished the first of week of Grade 5 and I can’t help but feel extra nostalgic, because this will be our son’s final year in his school after 7 years. The school feels like a community.

The schooling journey has not been without its challenges or meeting people who just did not get FASD.

But our son is able to experience successes and positive outcomes, because of an FASD aware and supportive environment thanks to his diagnosis and the supports the school has provided, including our son’s amazing Child Youth Worker.

I will never forget how, in his Grade 3 year, his teacher invited one of Surrey Place’s FASD Coordinator to speak to his class about children of all abilities.

We all know that FASD is a lifelong condition. But we can make life better by changing the environment around our children and individuals with FASD.

One step, one person, one community, one story at a time.

I want to end with a story. In April, we introduced our son to a tutor.

Her name is Ms Karen and our son’s first reaction was “Aren’t Karens mean?”

But she’s lovely. A retired teacher who has two adult autistic sons. She just gets it. She works with our son once a week to build his reading interest, stamina and confidence – an area of growth identified by his teacher.

Over the summer, she introduced him to The Bad Guys chapter book series. Our son loves them – I mean, who doesn’t love a main character who’s a gassy farting piranha.

Earlier this week, he crushed his summer reading challenge goal to finish not 1 but 5 chapters books. We could not be prouder.

I share this small win with you, because as this community that’s here today knows all too well, our small wins really are big wins.

That these wins are made possible when our children are surrounded by people who are aware, support them and who believe in them.

These are moments that feel rewarding, meaningful and that fill our hearts and give us the motivation to keep going during the harder times.

And that’s the message I want to share on this FASD Awareness Day. Thank you.”

As I shared with my fellow panelists after, the FASD caregiving journey can feel isolating. So I am thankful for community and to people who get it.

What a great day and event.

48 thoughts on “From One Caregiver to Another on FASD Awareness Day”

  1. I loved your video on Instagram – so powerful- and your comment about the teacher waiting to retire because she wanted to be with T – You have created an amazing community with your advocacy, writing, HUMOR, empathy and strong meaningful parent advice – Bravo, my friend!

    Liked by 1 person

    Reply

  3. I love how society is finally starting to understand FASD and other disabilities, thanks to people like you Ab! I remember walking to high school and every day a young man was always sitting on the porch with his body swaying back and forth. Nobody knew about this young man and I never saw him in the community. Now, at least in my community, kids and adults are doing everything in our community. You are such an inspiration and I can’t wait to read your book!

    Liked by 1 person

    Reply

    1. Thanks Diane. 🥰 I think some people get it, others don’t and won’t, but you have to keep on moving. Inclusion is so important so that people like that young man on the porch are included in everyday life. I also needed this kind word of encouragement from you. Today was a harder day so your comment came just at the right time! 💕🙏

      Like

      Reply

    1. Thanks Gary. 🥰 Oh, it can be very challenging on many days but we do our best to keep going forward. Thanks for the encouraging vote of confidence!

      Like

      Reply

  6. This is wonderful, Ab. You are doing much to reframe and support the conversation around FASD.

    I so appreciate the place in your video response where you gently reinforce that FASD is one part of the whole child. ❤️ Beautiful and true.

    Liked by 1 person

    Reply

  7. It’s wonderful how you’ve been so vocal about raising awareness for FASD and have been engaged with the community and other caregivers who are going through a similar journey. I enjoyed the video you posted and got a few good laughs in when you made reference to T probably climbing a tree and how he went to speech therapy and now he doesn’t shut up. It certainly sounds like it was a great event. And yay for T crushing his summer reading challenge goal!

    Liked by 1 person

    Reply

    1. Thanks Linda, it’s been a positive start to the school year and this FASD event was a nice anchor to that. 🥰 And I hope this becomes an annual tradition for our family and the community too. Hope M is having a great start to daycare too – and mom too!

      Like

      Reply

  10. Everyone has said it ahead of me, Ab. T is so fortunate to have such a caring and compassionate father, and the community around you, including your blogging community, is fortunate to have such a compassionate and articulate person willing to share those gifts.

    Liked by 1 person

    Reply

  11. Ab, this is beautiful and touching. T, Surrey Place, your local community, and everyone here is so lucky to have your care, passion, knowledge, and advocacy. You are certainly doing your part to make the world a better place. ❤️

    Liked by 1 person

    Reply

  14. A person is more than his/her disability. T has a brighter future. He has many strengths than can be nurtured, and having parents who are so supportive and with Ms. Karen’s help, surely, T will be an achiever. Congratulations, Ab.

    Liked by 1 person

    Reply

  15. I loved your comprehensive and honest advice, AB. It’s clear that you and your partner love T and are just like the rest of us who want what’s best for our children. I especially like the wisdom on latching on to someone who gets it and can offer support.

    Liked by 1 person

    Reply

    1. Thanks Pete. 🥰 The love is real but the days can feel long and hard. I know you can relate as both a parent (now grandparent) and also through your years as a teacher. One step and day at a time!

      Liked by 1 person

      Reply

  16. I love your panel answer – your humor and heart shine through in all of this, Ab. And “That these wins are made possible when our children are surrounded by people who are aware, support them and who believe in them.” — so incredibly powerful! Thank goodness for people like you!

    Liked by 1 person

    Reply

    1. Thanks Wynne. 🥰 The funny thing is that I had prepped for specific questions and the moderator asked me a question that I did not prep for and was meant for another panelist. Thankfully, I just spoke out of my ass and somehow sounded coherent! 🤣 I really do believe in the important of awareness, support and faith – and I’m so happy you picked up on that specific thread!

      Liked by 2 people

      Reply

  17. how wonderful and I loved your speech to the audience. you were so relaxed and confident and positive and I’m sure that really helped many parents who may be worried or struggling, or just beginning their journey with their child, to have some hope. you and your hubby are really finding your rhythm with T, he’s helping you find it, and it certainly hasn’t been easy, but you are doing it, and how wonderful is that?

    Liked by 1 person

    Reply

    1. Thanks Beth. 🥰 It was a good morning and a great community and the calm feeling was thankfully a reflection of that. Everything I/we can do to support caregivers at different parts of this… non-boring journey can help make their lives better and more importantly, their children’s lives more positive. 🙏

      Liked by 1 person

      Reply

  18. thanks for sharing. I knew nothing about FASD until I became a teacher and had three children in my class with this disorder. Glad to hear there is more being done to get the word out.

    Liked by 2 people

    Reply

    1. Thanks for sharing VJ! 🥰 The general lack of awareness about FASD, despite its prevalence, is dismaying. It often leads to misunderstanding and ineffective and stigmatizing approaches to addressing the behaviours, at the detriment to the students. But, as you said, thankfully more is being done to getting the word out. And generally, not always, principals and teachers have open minds and hearts to supporting children with FASD. One step at a time! 🙏

      Liked by 2 people

      Reply

    1. Thanks AnneMarie. 🥰 We’re fortunate to be part of a community where we can do our part at the local level – while advocating for systemic change at the macro level.

      No need to apologize! 😊 Language is important and we’re all learning or re-learning. And yes, the statistical prevalence is widespread but the supports and awareness are disproportionately less so. And that needs to change!

      Liked by 2 people

      Reply

Leave a Reply