Saturday, August 7, 2010

Designer Labels, redux

NOTE: I began this entry a month ago. I'm going to finish it as if it were August, and then do another one tomorrow to bring you up to date. Why? Because I can. So there!

Ah, what a glorious thing to always be right!


So, the visit to the Developmental Pediatrician. A swell time had by all. We rose at caffeine o'clock, stumbled into the van, and had a LOOOOONG ride, during which time James sang to me from the moment we started until the moment - several hours later - that we stopped. And he also rocked. And hooted. And threw various things! And generally was in a cheerful uproar. Apparently this getting up before roosters agrees with one of us.

We were early, and greeted by a surly receptionist who informed me, icily, that the doctor might not see me because "it is recommended that both parents attend so that the doctor may talk with one while the other watches the child, so he won't be a distraction."

"Distraction"? Dander: UP.

After informing her with no small amount of ice in my own voice that my son was a PATIENT, and the reason for the doctor having a practice to begin with, thankyouverymuch, I agreed that she should go check with the doctor to see whether this visit was going to take place after all or not. (In my head, I also suggested she check to see if she still had a job the next day, because I wanted to have her fired, publicly humiliated, and quite possibly fried in oil like the huge potato she resembled - but I held my tongue. I am the very embodiment of discretion, oh yes I am!)

So the short story is we had the visit after all, and the doctor was lovely, and we were there for HOURS (James even fell asleep in my lap as we sat on the floor and played), and he was charming and playful and did all his "things" for her, both positive and negative... and in the end, I walked out with the coveted Diagnosis on Paper. (Handwritten on office letterhead, but what the hey.)

As predicted by NostraMomus: PDD-NOS.

So what does this mean? This wonderful classification that we struggled and waited for all these months? That we all agreed would be the ultimate answer, since no other diagnosis fits?

Turns out, not a whole hell of a lot.

I have yet to apply for Social Security benefits for him, which it seems may be the only good reason to have bothered with all of this. We may or may not need the diagnosis to smooth the transition from Early Intervention to the school system - seems the district will be re-evaluating him regardless - and so far, those appear to be the only things we might conceivably have needed it for.

Oh yeah, and our peace of mind.


Funny thing: operating without a 'real' diagnosis felt simultaneously reassuring, because we were Doing Something For Our Son, and disturbing, because we don't really know what's wrong, do we? I mean, we're treating symptoms but not the disease, right? Right?


So oddly, now that we have this diagnosis, all the therapy feels somehow LESS targeted, and more 'throwing S&*^ at the wall to see what sticks'.

New Note: I lied. Evidently, I'm moving right up to now in this post. See where I did that? Slick, huh?

This despite the fact that it became increasingly evident, as end-of-summer changes in schedule made our therapy visits more and more sporadic, that James' behavior was suffering. His sleep patterns went all to hell, his rocking and flapping - which had all but disappeared - seemed to increase daily as Labor Day approached, and even though there were moments of incredible progress (imaginary play that he instigated with his sister's tea set, out of the blue; playfully feeding me a french fry one day when I was trying to feed him; his refusal to eat without his fork; and his sudden discovery of how to use a straw, relegating his bottle abruptly to 'toy i can make messes with' status and his sippy cup with built-in straw to 'must-have'; pointing to items in books correctly on demand), overall, he seemed to be losing ground in the areas that originally drove us to seek help to begin with.

Clearly, he both wanted and needed his wonderful group of pros helping him work all this stuff out, and was feeling their loss - sometimes quite keenly. And yet...

I guess, in retrospect, some foolish part of me had hoped that getting a diagnosis would mean moving ever forward and upward, firmly in control. Since I've never done that in any other part of my life, I'm not sure why I thought this would be the place where I started, but there you have it. Very mixed feelings, after all of this.

BUT: We should end with the most important thing, no? So here it is:

Fear not... it's chocolate frosting!

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?