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Toronto’s First Gathering and Walk-a-Thon for FASD Awareness

SEPTEMBER 26, 2024

September is Fetal Alcohol Spectrum Disorder (FASD) Awareness Month and for the first time ever, Surrey Place and our Classroom Celebrating Neurodiversity held a FASD Gathering and Walk-a-Thon. On Sunday, September 8, community members, students from The Classroom Celebrating Neurodiversity and Surrey Place staff came together to increase awareness and advocate for FASD social justice.

What is FASD?

FASD is a neurodivergence which may occur when there is alcohol consumption during pregnancy. No two people with FASD are the same and individuals can have various skills, talents but also challenges. Though FASD has the highest prevalence rate compared to other neurodiversities, even if we combine Autism, Down Syndrome and Intellectual Disability, this diagnosis receives the least amount of government funding and supportive services.

Individuals with FASD can experience a combination of challenges, such as focus and attention, regulation, processing, memory, planning and organizing, sensory, life skills and physical body issues. Without support and inclusive environments these challenges can lead to difficulties in socials settings, receiving services, navigating community safely, healthy relationships with family and peers and mental health.

Why do we gather for FASD?

The increasing need for social and government support is what inspired the community to come out for FASD awareness. Stigma and lack of awareness around FASD are causing significant social inequities and a lack of opportunities for equal participation. This results in broad discrimination and higher risk to vulnerabilities.

Individuals with FASD deserve access to equal rights. This requires better awareness, education, consultation, and inclusion of those with FASD.

The event was kicked off by Surrey Place’s CEO, Terri Hewitt who introduced Pete Keshane, Traditional Healer, to lead the group in a traditional land-welcoming.

Speakers and FASD advocates, such as Myles Himmelreich, RJ Formanek, and Maggie May, shared their personal journey with FASD and inspired many on the value of uniting to advocate for the community. Below we share more about our speakers:

  • Myles is a local, national and international trainer on living with a disability, FASD in the legal system, as well as the school system. He is a system changer and advocate with a passion for creating inclusion for community members.
  • Maggie is an adult who was born with FASD from Ireland. Maggie speaks internationally about the effects and impact it has had on her life. She provides advice for those living and working with FASD and supports others with FASD.
  • Having not received an FASD diagnosis until his late forties, RJ was startled to find how many of the strategies he had used throughout life were a result of FASD. RJ speaks widely, advocating for people living on the spectrum.

Thank you to our speakers, one of the most important ways to raise awareness for FASD is to hear directly from people with living experience.

Attendees were also able to take part in activities like face painting, button and poster making and had a chance to learn more information about The Classroom Celebrating Neurodiversity and Surrey Place. Indigenous Dancers and Drummers, and a student from the Classroom Celebrating Neurodiversity, kicked off the walk from St. James Park to the Toronto Courthouse. At the Courthouse, a banner was displayed to reflect the message about moving forward for FASD social justice.

Continuing to advocate for FASD awareness, education and social justice is important to ensure better inclusion for all.

At Surrey Place, we offer a multitude of FASD Services including diagnostic and service coordination. You can learn more about our services here.

We want to thank our project sponsors, SickKids Lotus Health Clinic and Red Shoes Rock, as well as our sponsors, the Ontario Brain Institute, Health Nexus and Pantree.

We want to say thank you to the FASD planning committee for all their work in the event: Lisa Cohen, Amanda Friedman, Courtney Farrow-Lawrence, Defne Inceoglu, Ann Lindsay, Eric Marier, Vathanan Jegatheesan, and Laura Davidson.

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By 2 months

Has your baby had their hearing screened? YES NO

By 6 months

Does the child?

Startle in response to loud noises? YES NO
Turn to where a sound is coming from? YES NO
Make different cries for different needs (hungry, tired)? YES NO
Watch your face as you talk? YES NO
Smile/laugh in response to your smiles and laughs? YES NO
Imitate coughs or other sounds such as ah, eh, buh YES NO

By 9 months

Does the child?

Respond to their name? YES NO
Respond to the telephone ringing or a knock at the door? YES NO
Understand being told no? YES NO
Get what they want through using gestures (reaching to be picked up)? YES NO
Play social games with you (Peek-a-Boo)? YES NO
Enjoy being around people? YES NO
Babble and repeat sounds such as babababa or duhduhduh? YES NO

By 12 months

Does the child?

Follow simple one-step directions (sit down)? YES NO
Look across the room to a toy when adult points at it? YES NO
Consistently use three to five words? YES NO
Use gestures to communicate (waves hi/bye, shakes head for no)? YES NO
Get your attention using sounds, gestures and pointing while looking at your eyes? YES NO
Bring you toys to show you? YES NO
Perform for social attention and praise? YES NO
Combine lots of sounds together as though talking (abada baduh abee)? YES NO
Show an interest in simple picture books? YES NO

By 18 months

Does the child?

Understand the meaning of in and out, off and on? YES NO
Point to more than 2 body parts when asked? YES NO
Use at least 20 words consistently? YES NO
Respond with words or gestures to simple questions (Where's teddy? What's that?)? YES NO
Demonstrate some pretend play with toys (gives teddy bear a drink, pretends a bowl is a hat)? YES NO
Make at least four different consonant sounds (p ,b, m, n, d, g, w, h)? YES NO
Enjoy being read to and sharing simple books with you? YES NO
Point to pictures using one finger? YES NO

By 2 years

Does the child?

Follow two-step directions (Go find your teddy bear and show it to Grandma.)? YES NO
Use 100 to 150 words? YES NO
Use at least two pronouns (you, me, mine)? YES NO
Consistently combine two to four words in short phrases (Daddy hat. Truck go down.)? YES NO
Enjoy being around other children? YES NO
Begin to offer toys to other children and imitate other children's actions and words? YES NO
Use words that are understood by others 50 to 60 per cent of the time? YES NO
Form words or sounds easily and without effort? YES NO
Hold books the right way up and turn the pages? YES NO
Read to stuffed animals or toys? YES NO
Scribble with crayons? YES NO

By 30 months

Does the child?

Understand the concepts of size (big/little) and quantity (a little/a lot, more)? YES NO
Use some adult grammar (two cookies, bird flying, I jumped)? YES NO
Use over 350 words? YES NO
Use action words such as run, spill, fall? YES NO
Participate in some turn-taking activities with peers, using both words and toys? YES NO
Demonstrate concern when another child is hurt or sad? YES NO
Combine several actions in play (puts blocks in the train and drives the train, drops the blocks off.)? YES NO
Put sounds at the beginning of most words? YES NO
Use words with two or more syllables or beats (ba-na-na, com-pu-ter, a-pple)? YES NO
Recognize familiar logos and signs involving print (Stop sign)? YES NO
Remember and understand familiar stories? YES NO

By 3 years

Does the child?

Understand who, what, where and why questions? YES NO
Create long sentences using five to eight words? YES NO
Talk about past events (trip to grandparents house, day at child care)? YES NO
Tell simple stories? YES NO
Show affection for favourite playmates? YES NO
Engage in multi-step pretend play (pretending to cook a meal, repair a car)? YES NO
Talk in a way that most people outside of the family understand what she/he is saying most of the time? YES NO
Have an understanding of the function of print (menus, lists, signs)? YES NO
Show interest in, and awareness of, rhyming words? YES NO
Read to stuffed animals or toys? YES NO
Scribble with crayons? YES NO

By 4 years

Does the child?

Follow directions involving three or more steps (First get some paper, then draw a picture and give it to Mommy)? YES NO
Use adult type grammar? YES NO
Tell stories with a beginning, middle and end? YES NO
Talk to try and solve problems with adults and with other children? YES NO
Show increasingly complex imaginary play? YES NO
Talk in a way that is understood by strangers almost all the time? YES NO
Generate simple rhymes (cat-bat)? YES NO
Match some letters with their sounds (letter b says buh, letter t says tuh)? YES NO