The Po Show

Wrong Turn?

So I've been told by two people, a child psychiatrist and a pediatric neurologist, this week that they feel Matthew might not have Asperger's.

I know it will be a good thing if this is not true, but the whole idea just blew my fucking mind. The thought that we have been seeking counsel and therapy for Matthew for 4 years based on an incorrect diagnosis makes me feel like running out into traffic. The psychatrist was APPALLED that we had never brought him to a psychiatrist before, and was really shocked that we had never had him evaluated by a neurologist. So basically I felt like the worst damn parent in the world, sitting there answering "No" over and over again. The neurologist kept asking me what behavioral modifications Matthew had received after his diagnosis (and I soon realized he meant *formal* modifications like ABA, not the little in-class plans they have put in effect every year), and was surprised when I said none. Again, making me feel like shit (he was nicer about it than the psych had been though). He did say he usually sees "kids like Matthew" between the ages of 18 months and 4 (giving the implication that Matthew really should have been seen a lot earlier, certainly earlier than age 9. BUT NO ONE EVER ADVISED US TO SEE A NEUROLOGIST!). He went on and on about how CA has been at the forefront of establishing the standard of therapy for PDD/NOS kids and how impressive care has been there. I finally said, "That sounds great, but that was *not* our experience." He just couldn't seem to believe that we had had to fight for services while in CA and we had gone through so many avenues with just no help whatsoever.

Anyway, I know it's good that Matthew's gotten OT and pragmatic speech and social skills group and his one on one aide all these years, and regardless of his final diagnosis, these were all beneficial therapies for him. But what if they are not all, or primarily, what he needed? What if we've wasted all these years, half his life, not giving him the help he needs the most? He has suffered *so* much over these years; what if much of it could have been avoided? What if we took a wrong turn four years ago, and the road we missed would have so much smoother?

I know a lot of people disagree with this, but I feel that my job, my primary directive, is to help my children be as happy as they possibly can be. Not on a minute to minute basis, but in a global sense. And I feel like a miserable failure.