Tuesday, September 20, 2011

The Post I Don't Want to Write

I've started this post four times and can't seem to get it written, or get it right.  Either I, or a sneaky Boo, accidentally published a few errant sentences last week that slipped from my fingers a few weeks ago. I've written snippets here and there on Google Plus, in Facebook messages to friends, and on replies to other people's problems on message boards.  What I haven't done is write about Bean's diagnosis here - it's all still in my head.

The biggest surprise about her "official-after-way-too-much-money-reams-of-forms-and-six-hours-of-testing" diagnosis is that there is a diagnosis.  In that secret place inside my head, way more secret than a Facebook status or the confines of this blog, I really thought the nice neuropsychologist would tell us that Bean is just fucking brilliant and that gifted is not a diagnosis.  

This is not what she said.  Not by a long shot.  She did say that Bean is very bright, gifted even.  She also said that Bean has Asperger's Disorder and ADHD, combined type which is often attendant with Asperger's but is not the main show in town.  Clearly, Bean is high-functioning to be sure, but firmly and squarely on the Autistic Spectrum, not hovering at the edges.

I know, this shouldn't be a surprise.  I mean, I already blogged about it, so it must be true, right? Honestly, until we received the results from the testing, I didn't really believe it.  I was sure I was wrong and that her pediatrician who's known her most of her life wasn't qualified and that the neurologist didn't really talk to her long enough or examine her thoroughly enough.  I was sure that all my well-meaning friends who think she's lovely were on to something and I was just asking for trouble.  (Because she is lovely - if she doesn't wake up after daylight breaks, and you're not rushing her, or using abstract explanations, or trying to get her to do something in a specific way, or clapping near her; or if you're another kid who doesn't really want to hear about dentistry, or doesn't understand why she's thowing her bike across the park because she can't figure out how to peddle the damn thing, or thinks she's standing a bit too close or holding hands or planting a kiss when it's really unexpected, or letting out the odd whoop on the play structure; or when she's had a half-hour too much social interaction for the day and she's getting manic, or melting down, or just drifting off out of reach, like a radio not quite tuned to the right station setting).

I always avoided reading the literature about Asperger's.  I read about giftedness, which seemed kind of, but not totally right.  And I read about ADHD, with similar feelings.  Or I read about the autistic kids who were middle to low functioning and non-verbal, and clearly that wasn't right.  But when I sat listening to the neuropsychologist, who was lovely in her own right - except when she said, "It is definitely Asperger's, every area of deficit, is related to Asperger's" - and when I cracked open the book I smuggled out of the Amazon box before Bean could see it, "Helping Your Child with Non-Verbal Learning Disorder or Asperger's Disorder," I knew this was right.

The biggest surprises of the diagnosis all went hand in hand with each other and with Asperger's: there are no learning disabilities, only poor working memory, slow processing speed, and very little ability to predict outcomes or make inferences.  Well, I'm no expert, but I think this is a working definition of the cognitive aspects of Asperger's that give rise to the social complications.  These issues contribute to Bean's below average reading comprehension skills, despite having decoding skills above the 95th percentile.  Her Asperger's tendencies are also to blame for poor handwriting and persistent dysgraphia - she's insisting that her stronger left brain that doesn't put up with abstractions stay in charge of the operation.  Even her striking attention deficits are more a partner in crime of Asperger's than a stand alone diagnosis.  The results explain why even though every teacher she ever had could tell she was bright, they were confounded by her difficulties with understanding instructions and why she dances beautifully at home, but stiffens up and stumbles over which foot is which in a class setting where there are too many kids for her to concentrate and the instructions don't make sense. (Bean tearfully ended fours years of ballet instruction last week because her beloved teacher is about to give birth and her previous teacher uses terms like "carmel legs" that make no sense to Bean, instead of "real" terms.)

Nearly three weeks later, Dr. Yap and I have finished the late night rehashing of the results. We're starting behavior modification at home (if I had known putting a nickel in a jar labeled Dentistry School Fund would get Bean to wear underwear or do a multiplication problem, or write a sentence - I might have tried it long ago).  Bean has begun meeting with a chid psychologist who specializes in working with kids with Autistic Spectrum Disorders, though she knows it as "friendship coaching." Down the road, when the final written report is in hand (warning to anyone headed down the diagnostic path - these things take months) Bean will start working with an occupational therapist on fine and large motor skills, and sensory issues.  We'll look for a tutor or tutors to help with reading comprehension and the boring math Bean hates.  And maybe, we'll even look for a school placement some time in the future.


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