Oh, you guys.. ok..you..guy.. I seem to have one person read this consistently.. This is alternately frightening (since these are my thoughts, and not really about popularity) and AMAZING (cuz someone likes me!!).
After I last posted, we had another round of evaluation paperwork and another appointment. The evaluations showed autism ( I know! I was surprised too! *eye roll*), and the visit was another rollar coaster ride from hell.
You see, Dr. B decided that if Mad was pointing at the pictures on her walls than he probably WASN’T on the spectrum.. WHUCK?? Didn’t we do this the week before last, and then you changed your mind last week.. and now back to this? UGH. I think my brain imploded. She most certainly means well, but good gravy marie, this is ridiculous.
We had an appointment scheduled this month after an 8 month waiting list. It was for a really well known Dev. Ped. at a major university in our area. It is an hour away from home, so not too far, but not next door either. It would be a trek with a very stimmy, sensory seeking little boy… who unbuckles every five EFFING feet.. AHEM. sorry.. Got a little carried away. Anywho.. we asked Dr. B if we needed to keep the appointment. She said no. He was obviously on the spectrum, so it wasn’t really necessary. Okey dokey then. Hubby said he’d call the big university dev.ped. and cancel.
I went to last weeks appointment with Dr. B and after her announcement that he WAS NOT on the spectrum (oh, my blood pressure is rising again), I asked AGAIN (AAAHHH) if we should be going to the big university dev. ped. She said YES. Holy Mother, you have got to be joking me!
Fortunately, hubby is a notorious procrastinator and never called to cancel. For once, this came in handy! (Also, I like caps and exclamation marks – in case you hadn’t noticed). Out to — the big city– we went. Boy was that fun.
The appointment was LONG. More evaluations, more questionnaires, more simple games for Mad to “play.” The usual. Big City Dev. Ped asked all sorts of questions I have answered for 2 1/2, years, but with one major difference. He LISTENED. (<– see I used CAPS again). At one point, he asked about Mad’s sensory seeking behaviors. I was mid-answer when I looked over at Mad. There he was, on knees and elbows, tongue to the carpet, propelling himself along in one GINORMOUS lick. OMG.. SO NASTY. Big City doc saw this and says.. “HMMM.. I guess that’s a YES on sensory seeking behavior!” It’s also an understatement.
Big City Doc was surprised that Mad was not yet formally diagnosed, but could see the hold-up. Mad shows some joint attention, intermittent eye contact, and some social interaction. The difference between Big City Doc (BCD from here on out) and everyone else was that he felt the quality of Mad’s social interaction was very imature and superficial. Basically, it was a skill we have taught him and praised him well for, thereby making it hardly valid as a real social skill (Evaluation wise, anyway).
The long and short is this. Mad is now diagnosed as PDDNOS. BCD felt that he may later test as HFA, but for now, PDDNOS fits. The main point was that no one, until now, was willing to take the risk of “labeling” what may turn out later to be a mostly “typical” child after therapies and school. Sounds reasonable. Except, that without the label? He won’t get therapies and school.
Is it always like this you guys guy? Will it always be such a fight? Such a battle for my child’s life? I am about all done in.
I hate socks... 