Reveling

Little Man has always taken intense likings to specific words or sounds.  He repeats them over and over, in high squeaky tones or low booming ones, whisper quiet or ear piercingly loud.  He's never shown much interest in the meaning or context of the current favorite.  This week however, has seen a new development. I found him yesterday spinning in circles and mumbling something I could not quite catch under his breath.  What'cha doing buddy?  I asked,

I'm REVELING he sang out, still spinning.  And sure enough revel, revel, revel was what he was repeating.  Do you know what revel means? I asked him and he stopped cold not even swaying - when I would be staggering from the constant spin.

"Sure" he says, "I'm liking it a super lot"  and off he went spinning and reveling away.

After spending time on some of the negative stats surrounding FASD again, I needed to write this.  He reminds me of my friends RJ and Savanna and their word salad just now.  I really need to get them to explain it some time as they understand it.  From the out side it looks like just tossing certain words back and forth to each other - ones that satisfy their ears and mouths I assume.

But I watch how happy it makes them and it makes me smile to see.  I see the healthy, happy, wonderful people they are and I see the reflections of them in my Little Man,

And I am reveling in Little Man's revels.

Image is children playing on metal playground merry go round

The Most Important Part

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.  

Perspectives

Image is a staircase perspective by Luciano Testoni taken from wikipedia

I am so very grateful to have met so many adults in the FASD community and for how openly they share their perspectives.  I was chatting with R.J. Formanek about fitting in vs standing out.   I get pretty passionate about respecting neurodiversity and not forcing people into molds.   R.J. reminded me that “sometimes remaining invisible is a good way to avoid things. Bad things, such as stigma and judgement”  He goes on to say that being invisible “can also cut you off from good things like sharing and love.”  R.J. told me “In the end, I enjoy having the ability to either fit in, or stand out. Not many people are lucky enough to have that 'ability'.”

Looking at Little Man’s ability to “pass” as neurotypical in some environments as a strength seems completely foreign to me but I respect R.J. and the other adults I have connected with so I need to really spend some time with this perspective.  I value these folks not only for the window they give me into Little Man’s perspective but also for their combined experience and accomplishments.  These are some pretty awesome people, ones I am proud to call friends, so to dismiss their voices or perspective would be not only short sighted and rude but, well, arrogant.  (Boy looking into the face of your own ableism is not pretty)

My first impulse is to counter with how much better it would be if we could change the world so no one felt the need to cultivate invisibility or blending in as a strength, but that is just defending my perspective.  I say all the time – I can’t know what it is to be neurodiverse – I’m just not.  I’m about as neruodamntypical as you get.  So if I can’t know the other perspective without asking – well then I need to really listen when I hear it right?

I want to chat about this more, with R.J. and with others, neruodiverse and neurotypical.   I really do believe the ability to enjoy or appreciate standing out and being unique comes from seeing difference being valued by others. If kids / people do not see others in their lives (especially people in “authority” like teachers, parents, other popular figures) value their differences then where will they learn it from? What upset me in my son’s IEP meeting was definitely not simply that someone commented that my son has the ability to "blend" but the feeling I got that it was expected he should - that not blending was not ok.  I don't want him internalizing that message. I don’t think it is healthy.  I want him to feel valued and appreciated just as much when he doesn't blend in as when he does - so he can feel good about making either choice for himself. Does that make sense?

But, clearly, I have some work still to do on me.  It may just be my bias – my perspective - that the need to value difference is so very important that made me read more into a comment than was really there.  That belief is so strong for me I was ready to gloss over R.J.’s words without really spending some time with them at first and that is not ok.  Besides - respecting my son, the person he is, means someday respecting if he chooses to “pass”.  After all that would be HIS choice to make right?

Non Speaking

I'm having trouble composing my own words right now so I thought I'd share with you a few things I am reading.  These are primarily from the adult Autistic community.  I long for the day when more of our adult FASD community speak out as freely and prolifically.  We so desperately need their voices.  I really believe it is the voices from within the Autistic community that has finally begun to turn the conversation from how to fix or force those who are neurologically different into the neurotypical mold.  Having the adults from our community add their voices would be a powerful thing.

Radical Neurodivergence Speaking

We Are Like Your Child

Just Stimming

Outrunning the Storm


Ann is one adult on both spectrums that blogs - Check her out for sure.

Living With FASD