Tuesday, December 09, 2008


So we finally have an official diagnoses. Pervasive developmental disorder - not otherwise specified.

Am I surprised? - no

Am I relieved? - a little

Am I sad? - you betcha

He is on the spectrum but based on the outcome of the ADOS and clinical observation. He didn't test clearly in one area though, thus the PDD-NOS diagnoses. The women who performed the test and our doctor who reviewed the session all said he was atypical in his scores. There was a lot to take in during our appointment today so it will be good to get the written report and read it over with no distractions.

The developmental pediatrician kept talking about how we need to focus on his behavior as the result of a deficit in his knowledge/understanding and not because he is choosing to be "bad." She gave us recommendations on some books and websites to look at to get more information on helping him with his social skills.

I think I've known intellectually that his behavior is the result of a "deficit" for a while, but remembering it in the moment is much harder.

I'm not sure yet if this is going to change anything that we are already doing, at least as far as the services he is getting. He's doing very well in his emotional support class so clearly what the teacher is doing with him is working.

At home Rich and I are going to have to keep remembering that much of his behavior isn't purposeful and that he has to be taught the correct way to read a situation/person and how to respond appropriately. It definitely means I need to keep working on ways to improve my patience and parenting skills.

I definitely have some mixed feelings right now...
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  1. Remembering that the behavior isn't personal is so difficult. So much more so than it sounds. I wish I had any good things to say besides sending you my love.

  2. I am both sorry and glad for you.

  3. My son has the same diagnosis. I think he was about five (or maybe six) when he got it. He is eight now and his behavior has been improving. It is still a lot harder to raise him than our typical six year old daughter but I am seeing some positive changes in the past couple of years.

    Good luck!

  4. Wow. I can relate to your reaction. We took our daughter for spectum testing. She isn't on the spectrum, but she does have a non-verbal lanugage delay / disability.

    The diagnosis felt a little like someone telling me I was drunk after I consumed four drinks in an hour. I KNEW what was going on for the longest time, but now it was on paper. It changed NOTHING. It didn't help me relate to her when she was in tears because she couldn't find the words to tell me about the visitor who presented at school.

    We still get frustrsated. She does too. But we are trying to understand that she doesn't hear what we do. Her processing of the verbal information presents differently.

    (sigh) Unconditional love and patience is all I can bring to the table...on a good day.

  5. I'd say welcome to the club, but like the rest of us you really don't want to be here. My daughter was given the label PDD-NOS a year ago, and I remember feeling very similar to how you're feeling.

    I know it's hard to hear, but knowing the diagnosis can be a good thing, too. Now that you know, you can hopefully get additional treatment for him. My daughter has made the most stunning progress in the past year thanks to her therapy.

    You're already doing the most important thing, which is being an advocate for him. A loving, determined, united family is the best therapy of all, in my opinion.

  6. Stop by to see my blog summary from today where you littlest one stole the show!