I was beyond privileged to participate in the Anishinabek G7 FASD conference last week in Sault Ste. Marie, Canada. The conference was hands down the most positive experience I have had since starting my journey with FASD. There was no sleight of hand or Pollyanna-ish glossing over the difficult realities that surround those affected by prenatal alcohol exposure but there was a pervasive faith in the ability of all those affected to rise above the challenges and a focus on what was needed to make that possible I have never seen at any other event.
The shining stars of the event were those that live with FASD every day. To RJ Formanek, James Gideon, Savanna Pietrantionio, Tanya Northcott, Amy Shawanda, Julian Assinewai, Matt Sinclair, Myles Himmelreich, and Daniel Cutknife, Thank you – thank you so much for being willing to share your lives and experiences with all of us. Your stories moved me to tears – more than once. In fact by the second day I had given up on mascara entirely. Never doubt the power of your words to make a difference in the world.
I participated in the conference as speaker as well as an attendee and the sessions I led were new for me. When participating in events like this I usually confine my topics to factual information – things like specifics about FASD prevalence, primary and secondary characteristics, the connection between brain function and behavioral symptoms, and sensory issues. I use lots of power point slides of brain images and research studies to make points. This time I chose to simply talk with the participants, to ask them to engage with me in imagining a world where seeing, hearing feeling things differently from one another didn’t make one of us right and the other wrong but both of us just another facet of the human experience. I asked them to step outside the box with me, and with all of our neuro diverse brethren and just be – without needing to delineate the differences between us.
It was very scary for me. First of all because I am hopelessly neuro typical and I LIKE my box. I find it very cozy. Also because I am used to relying on my slides and facts to keep me insulated from connecting with strangers. I am not comfortable in a large room of folks I don’t know. So having a formal “role” with the appropriate props helps me manage that. I believe all humans have our own strategies we use to buffer us from the parts of the world we are less comfortable with. Putting aside my buffer felt important when I was talking about how we expect – even demand - that those who are neuro diverse conform to the boxes that make us neuro typical types comfortable. We often describe people who are neuro diverse (be it FASD or ASD or other forms) as rigid, inflexible in their thinking, perseverative in their habits etc. which makes it funny (sad funny not genuinely amusing) how rigid, inflexible and insistent we neuro typicals are in trying to force those that think differently into doing things the neuro typical way.
I try very, very hard to live outside my comfy box with my son every day. Allowing him the “room” he needs to thrive without constantly bruising himself against walls that I may prefer – but do not NEED to be present in the same way he NEEDS them to be gone. I fail often, imposing expectations that are completely irrelevant simply because they are “usual”. Thankfully he continues to bloom in spite of my bungling. For me the most important part of the conference was the words of one of the attendees on the fetal alcohol spectrum about my session:
“I really need to hear your presentation again. Mesmerizing. I’ve never experienced that acceptance before. Your words are words I need to hear over and over until one day I believe it!!!”
No matter how often I fail - I cannot ever stop trying to speak and live acceptance every single day – because I want my son to know – without doubt – with no need for convincing – how wonderful he is just as he is. Thank you to the conference organizers and all of the participants for reminding me what is most important about this journey we are all on.