Last week we had our annual meeting with Henry's public school team. We got a progress report, updated his IEP, and talked about plans for next year. There were no big surprises, but his special ed teacher said something about Henry's verbal skills being at a 23-month old level.
The next day, I was going through some papers in my office and I found a speech evaluation of Henry from about 2.5 years ago.
And there it was: 23 months.
In two and a half years he has made no noticeable gains in his verbal skills.
He has made great gains in social skills, in attention span, and in receptive language (receptive language being how much he understands). All good; all things for which I am grateful.
But GAH! I am still discouraged and -- as my niece would say -- "frus-ter-ated" at that darned 23. He did, we believe, make some gains in the last year but this fall has seen a backslide, possibly because of all the new things in his life: new baby sister, new school, new teachers/team, new schedule. That's a lotta change. Still, 23.
Damn.
Damn.
Damn.
Thus I find myself once again visiting the autism blogs, boards, articles, parent sites, etc. trying to find some answers -- trying to find someone else who is going through or has gone through this. But what am I looking for? Do I want to hear, "Oh, yes, our son wasn't talking at age 6 but now he's 12 and he's just been admitted to Harvard Medical School!" Or even, "Our son wasn't talking at age 6, but now he's 8 and his language skills have progressed nicely!" I don't even know if reading anything like that would help at this point, because we have spent the last few years hearing "reassuring" statements of one kind or another, e.g.
"Once he has the ear tubes in, and his ear infections clear up, he'll be able to hear and his language will just TAKE OFF!" (December 2004)
"I bet he'll be talking well in a year!" (2005)
"I bet he'll be talking well in a year!" (2006)
"I bet he'll be talking well in a year!" (2007)
(lather, rinse, repeat)
and then the seemingly endless variations of "early intervention is the key...if he has x number of hours of VBA...if he goes to special ed pre-school...if he has more speech services...if he has OT to deal with the sensory issues...if he's mainstreamed..."
If, if, if.
The way I'm starting to think about this whole thing is comparing it to current theories of where autism comes from. You've all heard, no doubt, of the vaccine theory -- that the mercury in childhood vaccines caused brain damage in kids -- a theory to which I do not subscribe. Similarly, there are various other single substances that are thrown out there as being the culprit (aspartame, botox, lipstick [note that many of these circle back to mother blame -- mom's vanity -- dieting! trying to look young! getting all tarted up!]).
The people who toss out these little nuggets seem to be trying to discover the magic bullet, the ONE THING responsible for this very complex disorder, when more likely it was not any ONE thing, but a confluence of genetics and environment. As one analogy has it, "Genetic loads the gun; environment pulls the trigger." (I note that many of the analogies you find circulating in the autism community contain war and/or violent imagery. We're at war! At war with autism!)
The cause is unlikely to be singular; so, too, the "cure." Or even treatment. In Henry's case, the kid is bombarded (there it is again! war!) with treatments, therapies, educational instruction -- how many hours in the last few years? Well...lots. And I do believe these have helped him (but which ones, and in which ways, I couldn't begin to say).
But there seems to be something in Henry that is resistant to these interventions where his spoken language is concerned. If there's a magic bullet, it hasn't found its mark. If there's any one treatment that will make his language "take off", we haven't tried it.
And if -- as I suspect -- there is something particular to Henry's neurology, some kind of neurological switch, that -- when flipped -- will indeed make his language go off like a bottle rocket and light gloriously the sky of his development, and blow that dastardly 23 into smithereens, we haven't found it.
Of course my fear is that there is no switch, or that we'll never find it, and that Henry will remain largely non-verbal. It's still too early to tell, but I find that I am steeling myself for it. There aren't enough hours in the day to add more therapies.
This doesn't mean I'm giving up. I have a few idea of different things to try, things that might help make that connection, but it seems that until Henry's switch is ready to be found, ready to be turned on, all we can do is provide the environment -- loving and secure, encouraging, and chock full of hard work for each of us -- that might make that possible.
