Tuesday, October 14, 2008

Searching for diagnosis, Part 1

When Shea was about 2 1/2, his teacher at the Developmental Preschool gently suggested that we get a Neurological screening from the UW. Apparently, they have a pretty extensive facility just focusing on Human Development and Disability called the CHDD.

We didn't know much about it at first and were only given a phone number by the teacher. I left a message, waited, left another message and waited. Nothing. I waited a couple of months and tried again. Nothing. All in all, and I am not exaggerating, I had to have left more than 15 or 20 messages. Each one getting a little more concerned, frustrated and exasperated.

Maybe I have a bad number? That is when I started doing some thorough checking of the CHDD website trying to find an alternative number or some way to access a scheduling person. Nope. I had the right number. And, it did seem to be a real, legitimate facility that has access to all the experts to do a full screen for Shea. As more time passed with no response, I began to wonder; Was there so many kids needing Neurological screenings that they can't get back to us all? Did they not want to see him until he was older? Why weren't they calling me back? Even just to tell me there was a year waiting list and to hang in there?

The irony was sharp. Of all the parents who need some help, compassion and the luxury of not being blown off, it's parents with special needs kids.

I hit the wall; I begged my GP to find someone at Children's Hospital that we could go see. UW was non-responsive and I wasn't going to wait around for those jack-asses to pull it together. By the way, they actually did finally call me 18 months after my first call. They had no excuse, gave a minor apology and some lame CYA story about that scheduling person is no longer with us. Whatever. We did go through with the screening and I will cover that in Part 2.

We got appointments with a Speech Pathologist and a Geneticist at Children's Hospital when Shea was about 3 1/2. They sent us to the Cranial Facial clinic which is where they do all the amazing reconstructive surgery for cleft pallet kids. There was some initial concern that Shea's problem was physiological so we started there.

Jake and I together took Shea and spent a good chunk of the day. And, let me say, if there is a more wonderful, super kid friendly hospital in the world, I would genuinely be surprised. They made the experience very easy and not in the lease awful for all of us. I was so grateful to have some more expert eyes on him that I felt like weeping. But, I did keep it together pretty much.

The Geneticist came in and wanted to check for chromosome abnormality, so we would have to get a blood draw and wait 2 weeks for results. I remember the nurse was this huge, gentle giant of a black guy who took blood from Shea so quickly that he didn't really know what hit him.

Our meeting with the Speech Pathologist seemed to confirm the previous Apraxia diagnosis which I describe as a Neurological disconnect in the language center of the brain.

She did not see evidence of Autism which also had been brought up and reaffirmed by Bubble Lady. But, I wanted more. I asked for prognosis, "What happens to these kids? Do they ever speak? Will he have a life? What do you think, honestly."

She said, "Oh yes, the brain re-maps and creates new pathways. The brain learns to compensate for something that is difficult and finds other ways around it. Like when they are in college and they stay up all night studying, they may have difficulty finding certain words or running their thoughts together."

Holy cow! College!? I have been wondering if my kid was going to be mainstreamed in school! Wondering if I would ever hear "I love you" come out of his mouth! Wondering if he will ever be considered somewhat "normal" with friends and activities. And, she had him in college!

I don't know if she knew how happy she made me when she said that. I suppose I kept my cool but it was the stand out piece of info that came from that meeting. And, for a long while I clung to that thought, repeating it to all who knew me or dared to ask. Closing my eyes I began to see my little boy growing up to be a man who gets a little word jumbled when he is tired.

It seemed like a gift.

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