Saturday, November 14, 2015

The Golden Ticket

There are too many things crowding my brain these days all competing for attention at the same time like a bunch of unruly toddlers constantly interrupting each other and shoving one another out of my lap before I have even registered fully which is there.  I can’t seem to impose any order there inside my head so I’m spewing them out here in hopes that on paper they will be more manageable.  That I’ll be able to order them into some understandable pattern I can then address.  I have to stay as I get started I’m not very optimistic.

Little Man told me a story this morning.  Or more accurately I coaxed one out of him based on a random comment he made to me.  As we were driving back from the grocery store he told me
“Mom I wish I could dive in the pond and swim with a fish.” 

I could have just let it go with a “Mm Hmm that’s nice honey”  (I’m ashamed to admit that many days I probably would have – I let myself get to busy with things that don’t really matter)  But instead I turned down the radio and asked him, “What would you do with the fish?”

“We would play tag” 

“What kind of fish would this be?” 

“Big….and friendly …. And white with black fins and tail.”  (This, of course, is the color of the gold fish that swims the little tank in his room) 

“And what would you do after you finished playing tag?” I asked. 

“We would eat peanut butter sandwiches and laugh and laugh and laugh.“

My brain is trying to weave all those many things that have been jumping about in my head into that short interchange; Little Man’s communication struggles and what to do about them, his trouble making friends at school. The behavior issues we’ve been seeing at school (and home),  the wider issues with public schooling in general, the need to make the world more inclusive and accommodating.

How easy it is to miss what is really important in an interlude like this if we don’t stay in tune with what is going on in each moment!  Little Man’s inner life and imagination are so rich.  Yes of course it must be frustrating for him to struggle so to share it.  There will always be time to worry that his imaginary friends dominate his life because he has so few real ones.  And time to be sad that the world is so rushed all the time they can’t slow down enough to know him.  But the real wonder here is that he stays so sweet so funny and so interested in the world that rushes by him. 

I have no idea where I am going with this post.  Trying to spill my thoughts out on paper is not making them any more manageable.  I am sad that I can’t seem to find a way to make the world work better for my beautiful boy but I’m also so overwhelmingly happy that I have him, that when I remember to slow down and really try, I can peek into his world.  It is a world of magic and whimsy.  It is such an unimaginably lovely place, one where little boys and silvery white fishies slump together in tired contentment munching on peanut butter sandwiches after a long golden afternoon’s play.

I stumbled across an artist James Browne recently – one that draws fairies and elves and magical pictures that he inserts his own little boy’s image into.  I wish I had that kind of talent.  I wish I could illustrate my Little Man’s dreams but sadly I struggle to make stick figures look presentable.  I suppose that instead of bringing his world out for all to see what I really need to do is spend more time entering into it with him and just enjoying the fact that I am welcome there.   I am one of the few, after all, that has been granted an entry ticket.

Monday, November 2, 2015

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.