Bits and Pieces

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.

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4 Comments (+add yours?)

  1. lynnes
    Mar 25, 2011 @ 11:09:07

    Hi there! I followed your comments on another blog back here and have been reading from that point forward.

    I think this period of, “is it/isn’t it” is the worst of it. Too much mental energy spent on analyzing every social interaction and behavior, trying to fit those behaviors into checkboxes on yet another form. And for me, whenever someone told me G couldn’t be autistic because he had such a great vocabulary I second-guessed myself, worried that I was trying to shove the label on him. Once you get the professionals to consistently agree and you get the label that grants you access to services, it gets easier. Because you’re just accepting and dealing with what is instead of wondering, ‘what is it’

    Hooray for BCP for actually listening!

    Reply

    • sockmommy
      Mar 25, 2011 @ 13:16:27

      Thanks for commenting!
      The yes/no, can’t be/of course it is, I must be crazy and seeing things that aren’t there/no way is this typical, is just EXHAUSTING! It’s a relief to finally have a diagnosis. Which of course makes me feel guilty, because who is excited that their child has a neurological disorder…I guess that would be me.

      Reply

  2. kris
    Mar 26, 2011 @ 00:42:27

    I feel as though I am coming in halfway through the story, as this is my first time to your blog. I am so happy that you finally have a diagnosis . . . but I do not know enough about what this diagnosis means to speak to what the future might hold for you and your family.

    I need to go back and read some more posts.

    You know @jillsmo on Twitter?

    She is awesome. Go check her out.

    Reply

    • sockmommy
      Mar 28, 2011 @ 08:57:44

      I haven’t read her on twitter,but I do read her blog. She is great. I hope some of my past posts clear some things up. If not, please feel free to let me know, so that I can fill in some of the blanks. Thanks for dropping by!

      Reply

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