Thursday, September 8, 2011

U is for Uncharted Territory

U is for…

Uncharted Territory

What I feel I step out into every day, in my life lived here with my son Jacob, on our own particular wavelength of the Autism Spectrum.

Because he is like other ASD kids in this or that aspect, but his particular constellation of neurobiology is completely unique. A supernova unto himself. 

I have a friend (who himself is on the spectrum w/ NVLD) who says of his SN son: He has a 100% diagnosis of being {NAME}. Of that we are certain.

Sometimes when I tell people I have a "high-ish functioning" kid on the autism spectrum they say, "Oh, Aspergers" and I have to laugh. Because, truth to tell, he is the anti-Aspergers, language processing being his primary deficit.

A little professor he most certainly is not.

When I tell another autism mom he loves baseball she nods and talks of how obsessed with the stats her aspie son is, and I have to laugh. Jake wouldn't know a stat if it bit him in the ass. And his knowledge of the basic rules is sketchy at best (let alone the thousand arcane ones that the baseball obsessed usually revel in being privy to).

No, Jake loves baseball for the... well, I actually have no idea exactly why, other than that his (wonderful) school took the kids to a minor league game on a field trip this July, and somehow he fell in love with the boys of summer that day.

I think perhaps he loves the drama of it all. He likes to shout out: "You're out!" and "He's pitching the ball, Mom!" or "He's hitting the ball, Mom!" excitedly while watching a game on TV. And Jake is over the moon that our family is going to a Mets game soon (his idea).

My little corner of the neurodiverse universe.

And, in another corner of it, today is Ethan's first day of school. 4th grade, a big year. He's anxious (it took him FOREVER to fall asleep last night).

4th grade is his uncharted territory: new teacher, new kids (and none of his close friends in his class), academics ramping up, ADD acting up (anxiety always triggers it).

And, most importantly, standardized tests that count, REALLY count, as in NYC they pretty much determine what middle school he'll get into. And he knows it (the kids talk). And he feels the pressure, and wishes he could go back to simpler times.

Nine years old, and already nostalgic, declaring, "My friend Peter is so lucky he's in 2nd grade, they don't have any big tests yet. 2nd grade was a great year." and sighing.

It was not easy for me to get this post out today, having just rounded the bend from those last lingering weeks of summer vacation, the unstructured days starting out glorious and degenerating into bored, fighting children and exhausted parents barely parenting. There be dragons here.

I almost called this post "U is for Unfinished" and made it a one sentence post:

U is for Unfinishe….

But couldn’t bring myself to do that (even though I gave myself a nice little chuckle at the conceptual humor involved in that stunt) because, well, when have I EVER been short form, really?

So I started to search for other U words, and realized so many of them were "Un-" words. How appropriate, as my life feels like it's full of a lot of Un-s right now.

Some days I feel:






My real self just buried so far:


That the pressures so thoroughly:



Unrelieved, nearly


But I am also:

Unrelenting in my search to find new ways to help and support Jacob

Uncompromising in my insistence that the bar be set high for him

Unbending in my belief in him, that no one should ever, ever

Underestimate his intelligence or

Understanding of what is going on around him.

And my life is also, always:

Unbelievably fulfilling

Unimaginably beautiful, and full of love, here, in the

Uncharted territory I sail off into every day.

And? It's a good thing I like dragons.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And maybe I should have just written about Ukuleles.

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