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!


  1. I love the way you honest and heart felt.

  2. I've told ya before that I, too, love how you write; straight forward, down-to-earth & so compassionately. So for Gods' sakes, will ya write that book already???

  3. I love this blog!!! Ever since my Todd started showing signs it was a constant battle with the school district just to get him eveluated. I feel your stress over the "back sliding", for lack of a better term, that goes on during the summer when services are all but absent. I can't believe your district wants to evaluate him themselves, my district was happy to take the diagnosis from anyone rather than spend thier precious budget on a evaluation. I finally just had the psychiatrist right "the magic letter" to the district with the PDD NOS diagnosis just so this kid could get more help! BTW, I agree you should write a book!