Friday, August 6, 2010

Designer Labels

Welcome back. Sorry for the latest delay; we've moved, and all kinds of domestic business and insanity has occurred. We've switched a bunch of therapists, and our Psych, OT and Speech folks (Jeff, Gr-beckah - as dubbed by Her Royal Highness Miss Muffet - and Rita, in order) now all come more than once a week.

And we have team consensus!

James is adorable, we all think. (So wise, these therapists.) And a conundrum. Behaviorally, he's... definitely something... but... what?

He picks up new skills like a sponge. He will now point to things in books, wave bye-bye sometimes, sign "more" a LOT, and has several times strung two words or word/signs together: most famously when he had just generally HAD it with being dragged around WalMart, and specifically HAD IT with his idiot mother, who kept cooing maternal inanities at him but who is - as he so clearly pointed out when he was finally pushed past all the limits of reasonable endurance, and was forced to shout, with great emphasis, "MO BAH!" in her face to get a damn drink - a bit dim in the what-to-do-to-solve-this-problem department.

Dear gods, was that even a sentence?

Anyway. He uses his fork with very little reminding, and is getting better with spoons. (Meaning, they stay in his hands, and sometimes even have food on them. Hey, it's an improvement!) He is getting pretty good at drinking from cups, although heaven help the fool who tries to pry his BAH out of his hands in the morning. He stacks blocks with reckless abandon, and will sometimes help you put things away. He rarely rocks or flaps these days. He never has a real tantrum, and has none of the rigidity about textures, schedules, light, noise, temperatures, or ANYTHING that is commonly associated with autism (or even his siblings)... and yet... he's just not... there's something... he doesn't...

Shit. No one knows. None of us! We all agree he's crazy-bright and sunshine-smiley and funny as hell when he giggles, which is often, and he does eye-contact and loves snuggles and what the hell do we CALL this?

So tomorrow, the long-awaited appointment with the Developmental Pediatrician. ::cue booming reverb echo:: - trician - trician -trician...

.. and supposedly, we will come out with a diagnosis. A DIAGNOSIS -osis - osis.

A diagnosis will enable me to, among other things, get him Social Security benefits, and assist me in procuring any and all services I might desire to get him, should any problems in doing so ever come up.

Which is good, right?


So, while I should be sleeping, and despite having missed a gajillion posts between then and this, I am instead feeling very put-upon by the imminent application of a label - a label I WANT, mind you, a USEFUL label - to my baby.

I know what it will be. (Jump back, Nostradamus, Momma bear is in dah HOUSE!) It will be PDD-NOS. You watch.

Why? Because N-O-S stands for "not otherwise specified", and if ever there was a kid with a pervasive developmental disorder that couldn't be specified, lawdy, this one's it.

The good doctor has been in business for 37 years doing this. She is, coincidentally, in the place I consider my spiritual home, my touchstone, where I go to recharge: Woodstock. She comes so highly recommended that it took me months to get in to see her, and I am getting up before fricking roosters to drive up there (2+ hours) just to let her ask me all the same questions I answered when I filled out the MASSIVE application (application?!) for the appointment - you remember. The one I slyly (Oh, Mom, you're so clever! How DO you do it?) put his picture on top of, so she wouldn't forget he's a somebody, not just a pile of reports, or a bunch of behaviors, or a label.

A label.

By this time tomorrow, we will have a label, and my Jamesy will be, once and for all, irrevocably, an autistic statistic. A tick on a graph. One of the crowd. A file folder in someone's office and a bunch of reports on some computers, a problem to be solved, even a success to be applauded (given how wonderfully our therapists are doing) - but no longer JUST Jamesy, who, you know, we know he's somewhere on the spectrum, but we're not sure what's up, and hey, did you see he puts his arms in his shirt all by himself now? And watch him draw a face - he adds hair! And ears!


Clearly, this post needs to end like this:

In't he cute?

1 comment:

  1. Dang it, Peachy, ya got me tearing up with the photo at the end! What a wonderful description of what you've gone through and all you're experiencing now. Yes, James may become a statistic or a tick on a graph, but a very IMPORTANT one to be added!! Because the more we can document it, the more funding will become available for research and benefits. So take heart in the fact that even though he's going through so much, and he'll be labeled by the doctor's diagnosis, he does matter so very much, in so many ways. And first and foremost, he is JAMESY!!! ;)

    Good luck with the appointment - my prayers go with you, sistermine!!! >>hugs<<