I finally had my appointment at Children’s Hospital today to get the results of Charlie’s neuro testing two weeks ago.  I’m not really sure why I had to go in to Seattle to hear what they had to say.  They could have just sent me a letter that said, “We don’t know anything new.”

• He clearly has ADHD
• He clearly has ODD (Oppositional Defiance Disorder)
• He may or may not be autistic

Thanks!  I could have told them that.  In fact, I’m pretty sure I did.

The ADHD and ODD doesn’t really need to be addressed, because everyeone I’ve ever met agrees with me that he has that symptoms to qualify being diagnosed with both of these things.

But what I don’t get is why no one can tell me why he is developmentally delayed.  What is the underlying factor/disease/condition.  He is clearly intelligent.  So why did he not speak conversationally (minimally, even then) until he was 4-1/2 and the delay in potty training and motor skills and the tantrums and behavior problems.

Everyone told me that Children’s Hospital neuro team would be the one’s to figure it out.  What they told me is that they don’t know and we may never know.  They not only couldn’t tell me why the delay, but couldn’t tell me whether he would continue to be delayed now that his speech has kicked in and he is getting extra help.

The only “new” info they had for me was just a solid number - That he was in the 16th percentile for speech cognition - basically how he processes what he hears said to him.  16th percentil means that he is only better than 15% of the rest of the kids his age.  To be average would be to be in the 50th percentile.

So really, that is not news to me, but at least it’s a solid, measurable figure, I guess.  Oh, and it doesn’t do us any good, because to qualify for special help (one on one speech therapy) at school, he needs to be in the 15th percentile.

They said he clearly has many autistic traits and they pretty much matched my opinion that he meets all criteria for autism except the social aspect - but that he does kind of qualify for the social aspect.  He does not make friends and does not have satisfying social interactions because of a lot of his behaviors.  So they said that he may or may not be autistic.

They want him to go to a behavioral psychologist and try an ADHD medication specialist to find the right meds for him.  Then wait a year and if he still can not make and maintain appropriate relationships/interactions with others, he could still be diagnosed as autistic.

I’m not happy about waiting a year to see what is wrong with him.  A diagnosis of autism is not going to help him any.  I wanted to know what else it could possibly, and they said there is nothing else to explore.

So my plan is to work with him myself on his weak areas - speech cognition and vocabulary (though I’m not sure how to do this) - and find out what I can about his sensory problems possibly causing his ADHD symptoms (which she admitted could be happening) - and only then explore medication.  Based on my own research and the opinion of a sensory specialist.

I don’t want to jump right into medication.  Because what if medication blocks his ability to express that he is uncomfortable?  And if he is uncomfortable, what can I do to make it right?  What sensory things can be done for him to prevent his discomfort and these ADHD-like symptoms from keeping him from learning, understanding and developing normally?

So anyway, there is is.  He continues to be Developmentally Disabled with additional diagnoses of ADHD and ODD.  (I think ODD is bunk, by the way - he’s just stubborn and on his own agenda - but that’s what they said he has.)

1 Comment »

1. 

   this is really cool. keep writing. i’m curious to learn more and i’m wishing you and your son the best!

   Comment by reader — January 27, 2009 @ 9:12 am

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