Thursday, August 28, 2014


You can always tell when Thing Two's annual evaluation with the neurodevelopmental pediatrician (NDP) is coming patience (never my strong suit to begin with) becomes almost nonexistent and my stress levels go through the roof.  I hate those visits with a flaming vengeance even though the doctor is as pleasant and professional as she possibly could be and the news she's delivered the past year or two has actually been more positive than negative.  It's mostly an emotional holdover from the earlier visits with her where we sat and watched him tank all the tests and then had to listen to how far behind he was in pretty much everything language-related...tough to take as a parent.

We take him to her once a year because it's good to have that annual 'snapshot.'  Everyone else he works with sees him so often that they have a hard time stepping back and seeing changes, but she can tell us about progress year-to-year, and she also gives her professional input for his school IEP--what accommodations she thinks they should provide, what therapies he needs, that sort of thing.  Luckily, the school and the NDP are very much on the same page and we haven't had any major conflicts, a situation which I am not taking for granted, believe me.  I'm very much aware how fortunate we are in that respect!

He's never actually had a formal diagnosis, interestingly.  In younger children, behaviors resulting from communication disorders, autism spectrum disorders and ADHD can overlap to such a significant extent that it's hard to tell what's going on with any individual child, since appropriate social behavior, language and the ability to focus are all highly interdependent.  He's in the age range for testing now, but the NDP is reluctant to recommend that we go there because he'll still be getting the same therapies regardless of what the tests show, so there's really no point.

Anyway, back in 2013 the powers that be published the latest update to the Diagnostic and Statistical Manual of Mental Disorders, the American classification tool for psychiatric issues.  The current version is DSM-5, and in this version there is a new diagnosis called Social Pragmatic Communication Disorder.  The NDP showed us the list of diagnostic criteria for this disorder yesterday, and more so than anything else I've seen, it fits this child.  Again, the diagnosis doesn't matter, except inasmuch as it helps us to get our son the help he needs, but in a way it's a relief to see that our kid isn't the only one out there with this specific constellation of issues.

On the bright side, this year's evaluation was very positive.  The tested area with the LOWEST test results has him functioning at grade level (third) and the highest results were fifth to seventh grade level.  The kid is bright, no doubt.  What concerns me is that, precisely BECAUSE he is so bright, the kid on paper is not at all the same as the kid in front of you: the language and social deficits that the test results might otherwise mask are obvious in person.  My concern is that for the first time since this whole bloody mess became apparent, he's entering a gray area where some might say he doesn't need help just because his scores are so good, despite the fact that anybody who actually talks to the kid for more than fifteen seconds can clearly see that there's still a problem.  At any rate, for the first time in the five years we've been seeing her, she dared to predict that his deficits might not be significantly affecting him by the time he gets to high school, which would be such a blessing that I cannot BEGIN to tell you, especially considering how staggeringly low-functioning he was as a preschooler.

He's told me on more than one occasion that he "does not want to need help," itself a reflection of how far his ability to articulate his thoughts has come in the past few years.  He's a proud little guy and hates every.single.minute of all the assistance he gets (speech and OT and social group and all the rest of it) but clearly it's working, and so we will persevere.


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