Sunday, November 25, 2007

The Alphabet Soup of Diagnosis

I think we have reached an impasse. I am really struggling with what to do. On the one hand I refuse to be beholden to diagnosis, I don't want my child prejudged or held down by man made labels. I try to tell myself that the letters that exist after his name are already enough for a 9 year old, do I really want to add more? For what purpose? As it is we had a school meeting a few weeks ago and the Special Education coordinator was new and I spent five minutes just listing the various diagnosis and "issues" - all the while trying to start with my sons strengths and being respectful of all his wonderful qualities rather than making him sound like a walking DSM-IV

So here is the situation - when C had neuropsychological testing a couple years ago it showed that he had "multiple learning disabilities". Actually, it really said "what best could be described as multiple learning disabilities" or something to that effect. I won't rehash the whole experience but lets just say we have never really understood what that meant. We were not given specifics about which specific learning disabilities he has. Fast forward to Grade 4 and I am being told that he is reading at grade level and his Math is just slightly behind (not sure that I agree with the math but he is making steady progress). His writing is behind but considering his "below first percentile" in the Occupational Therapy testing and that he just got his computer this past September, he's doing well. I knew at the time the testing was completed that no one had a crystal ball and he was so young that we had to interpret the results with caution (even if the administering Psychologist didn't).

Everyone agrees that C has made huge academic progress and we are all delighted. Why then can I not just sit back a relax. Other parents grappling with the same issues will understand. I cannot sit back because there is soooooo much more to be done. C is still not allowed to eat lunch with his class. He "sometimes" gets recess and truthfully, he has no real friends. More and more he is struggling to understand social interactions. He just doesn't interact the way that "typical" kids do. He talks to people assuming that they already know what he is talking about, he dominates conversations or juss walks away when people are talking to him. He is enamored by a classmate and has made her feel extremely uncomfortable by trying to give her presents, staring at her and yelling "I love you" across the playground. He comes across as selfish and self centered and I know this is not true. The relationship between he and my husband is more strained than ever. Today he (C, not my husband) had a meltdown in the middle of Walmart, complete with punching me in the back and rolling around on the floor. Who is this child and why is it that this doesn't seem like just LD's or the OCD, or the ADHD or blah blah blah. Something else is going on and I am really thinking that we need to know.


  1. Hang in there, you'll find out what's going on. Has he been screened for an Autism Specturm Disorder? My son, Jaysen has ASD, and those meltdowns are a weekly occurance.

    Also, you mentioned that your son was diagnosed with TS (as mine is now speculated to have)- would it be anything to do with the TS? I don't know too much about it, but the Neurologist did attribute some of Jaysen's behaviors to it.

    Also, is he going through some pretty big progresses recently? It's pretty often that when a child makes major advances in one area, another area gets "put on pause". Jaysen has been making great strides in his social interactions lately, but has fallen behind academically (where academics were once a strong point of his). It should even out once it becomes more familiar.

    As far as Alphabet Soup diagnoses- forget about the actual letters...what does C need? Do you feel it's OT/PT therapy? Behavior management? Social work? Speech? Social Skills? Whatever they are, that's where to start. Work with C, not his diagnosis. He certainly sounds like a great kid that keeps you on your toes! ;)

  2. Thanks mommy dearest for you words of encouragement. it's been a long road and we haven't ruled out ASD. As for the TS, not to say it doesn't play a role in all of this but many kids can have TS and not have the difficulty reading social situations and using social language which makes me think it's not "just TS".