Wednesday, January 4, 2012

Yet Another Diagnosis

I haven't been ready to type the words until now. Autism Spectrum Disorder. There, I did it.

In October, Culley had his autism evaluation. We were referred to this organization because they had a doctor who had extensive experience with children with hearing loss who was also a child psychologist qualified to evaluate children for autism. We'd been trying to get this evaluation scheduled for almost 6 months. By the time it came around, Culley was doing so much better than none of his therapists believed he would get the diagnosis. But he did. On the day of the eval, he had just started a cold and was pretty miserable. He did a lot of "nice things" like shared interest and appropriate play. But I guess he did just enough inappropriate things, like not making enough eye contact with the doctor and not showing enough facial expressions, to get the diagnosis.

So, on the day he was evaluated he was on the very high functioning end of the spectrum. I say it like that because I realize that 6 months before he wouldn't have fared nearly so well, but 6 months before that he would have tested much better. Two months ago, I have my doubts that he would've gotten the diagnosis at all, but last weekend I know he would have. I know, that doesn't make any sense right? Autism doesn't come and go like that. But in Culley's case it seems to do just that.

What I used to call his "sensory seeking behaviors" which go hand in hand with his attention/willingness to connect with people and language development, I guess I can just call symptoms of autism? Well those symptoms were at an all time high when he was about 2 1/2 years old. With lots of varying OT they began to diminish and then disappeared all together by the time he was 3. Three months later and one month after his first cochlear implant, they reemerged in full force. It took 6 more months of intensive therapy (of all sorts) before they diminished again. We'll see a small sign here or there but we know when those here and theres start adding up that they're on the rise again. After a huge language explosion that began about  2 months ago, the symptoms began increasing over the last couple weeks. I couldn't get into see the OT soon enough. Luckily, most of his language had been "cemented" so he didn't lose much. He had began to finally get the hang of personal pronouns but he's lost it again. I've gone back to trying to explain who "you" and "me" are:(  The cause of the increase in symptoms is always difficult to determine. It started mid-December, just a week before Christmas break. The 19 days off from school definitely exacerbated the problem. Now that we've resumed the cranioscral massage that was so beneficial the last time this happened, school is back in session and we are seriously limiting playdates - since most of our friends don't realize that coming over for many hours while their kids run rampant, isn't appropriate- I'm confident that we'll see the symptoms subside again.

Even considering this recent setback, Culley has been doing amazingly well. He's using 5-7 word sentences, including most connecting words and I can understand him 90% of the time. He loves all his friends in preschool and calls them by name. He just had his 4th birthday!! His party was at the ice skating rink but I was too busy corralling and entertaining 14 preschoolers to take many pictures:( Since this is the first birthday he really understood was coming, we felt it important to make a big deal of it. Next year, I think we'll lay low.

2 comments:

  1. There's nothing like the gravity of the diagnosis, is there. So confusing, and with the hearing issue to boot, I feel for you.

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  2. Hi,

    My name is John and I have a quick question about your blog! Could you please email me?

    Thank you,

    John

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