Friday, April 1, 2011

Every day is Autism Awareness Day 'round these parts

Here is my beautiful son, Jacob. He has Autism:

There, so now you are aware.

OK, as you (hopefully) know, today, April 1st is the kick-off of the very official (and alliterative) sounding: Autism Awareness Month, with tomorrow, April 2nd being World Autism Awareness Day. Well now, that's starting to be a mouthful.

Rumor has it they were originally going set the big "Day" for April 1st, to coincide with the month's kick-off, but then some wise person realized it might be a tad um, cruel? ironic? to have that fall on April Fool's Day. Ya Think?

But around here? Well every day is really about Autism Awareness now, isn't it?

There isn't a day that goes by that I'm not acutely, astoundingly, profoundly and matter-of-factly aware of my son Jacob's autism.

You would think that by now it would seem to be old hat, taken for granted, a given. And in some ways it is;  just Jakey being Jakey.

But this, too: as the boys get older and as the ways that I parent, talk to and interact with Jacob and his (mostly) neuro-typical (NT) twin brother, Ethan, grow more and more disparate?  I am strangely growing more aware of Jake's autism day-to-day, rather than less. Go figure.

The fact that it really isn't going to go away, he really isn't growing out of it, and that this Autism Mom thing is rather surely a lifetime gig? Starting to settle into my consciousness about now, now that he is eight and a half and perched on the edge of little boy becoming big boy, soon to morph into teendom.

I might remember to wear blue today, I might not. I am not in a place to make big promises.

Why is blue now the official color of autism, anyway? (I thought it was "Rainbow Puzzle.") Well... I know some people think it's because that's the color of Autism Speaks logo, but I like to think it's blue from autistic author Daniel Tammet's lovely book "Born on a Blue Day."  Because I really like what Autistic folks have to say, themselves, about themselves and how they experience their neurodiverse brains.

Well, there is a lot of wonderful going on right now...

Buildings are being lit up blue for WAAD. (I'm just not typing the whole thing out each time, OK, you all know what I'm talking about, yes?) The amazing Jess of diary of a mom has been one of those spearheading a campaign to light the White House blue.

Alysia of Try Defying Gravity got Parents Magazine to post autism family stories on their blog all month long starting with hers, today!

Just about every autism blogger I know -- and we are many, a veritable small (and feisty) army -- is posting about it, embracing the blue or explaining why they're not.

I felt I should do one of two things... write another "important, big thoughts" post about autism like this one: From Autist to Artist  or this one: The Beauty of Each, Our Every Child.
Or, on the other hand, I thought I might write a moving tribute to my beautiful son Jacob, celebrate his specialness, the gift that he is in our lives, a balanced view of the joy and the struggles....

But, ahhhhhh, crap, that was just not to be. I've had sick kids home from school (one or both) for three days now. My heart is just not into it. I want to burrow inward, not expand outward.

I am sleeping neither well nor enough. In short: I am really worn out, worn thin. (My soul that is, my body... due to stress eating... thin not the operative word here.)

I feel light-years away from brilliance, from inspiring anyone, least of all myself.

I am so glad that I started the Special Needs Sibling Saturdays guest post series, and have some amazing posts queued up in the hopper, so that at least something useful and wonderful will appear here every Saturday for the next month, and beyond.

And yet, I feel like I have no good excuse for this. There is no one thing, nothing particularly, specifically going wrong in my life.

It's just the cumulative stress; the day in day out, never a day off, never turning the reins over to someone else, never catching my breath before running off to the next mini-crisis, never just turning my responsible brain off even if I have handed a few tasks over to someone else.

I am feeling crushed, not by a boulder but under the million pebbles, the aggregated weight of being a special needs parent, of autism, today.

And I so didn't want this to be the story I told today.  I want to tell you all about the beauty of my son Jacob, who is on the autism spectrum... or has autism... or is autistic or... I don't know what's the "correct" way to phrase it anymore.

My friend Peter, who is himself on the spectrum with NVLD has a son who is likewise "on the spectrum" somewhere but without a clear diagnostic label.  What he says about his son is: "G" has a 100% diagnosis... of being "G."  And some days that's what I want to say about Jake.

Jacob is... Jacob. Unique and beautiful.  My autistic snowflake.

OK, I know I'm rambling now. Some days I like to ramble, to explore my brain, where my tangled thoughts take me. Today I just feel lost, unfocused.  But today, this will just have to do.

This is me, this is my (ADD-rific) brain, this is my family, with autism. Messy, but hanging in there.

Here is my beautiful son, Jacob. His favorite color is yellow. He has Autism:
There, so now you are aware.

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