Saturday, July 8, 2017

a rose by any other name...

a couple of days ago we went to a new doctor...we've had a pleasant break where we havent had to see too many doctors, but we've decided to tackle dom's spasticity in his upper extremities since his legs seem to be relatively good to go after surgery last year.

so we went to a new doctor and started talking to them about dom's diagnosis, his personality and so on.

one of our great mysteries with dominic is his speech regression. when he was about 18 months old he had a decent number of words. he could sing along to songs...and his therapists even wanted us to start working on multiple word sentences with him. then somehow within 6-8 months those words just disappeared. we have no idea what happened.

we've explored every possibility including apraxia of speech, side affects from medication and so on. one thing we did talk to our doctors about was the possibility of dom being on the autism spectrum given some of his other symptoms, but at the time our doctor said that he didnt think that was an issue for us, so we kind of forgot about it.

but in talking to this new doctor the topic of autism came up. and here's the kicker...we never really know what is and what isnt related to dom's CP. it might not be autism...it could be pervasive development disorder. buuuuut, when you add up all of the symptoms: lack of eye contact, on and off again social issues, the occasional inconsolable meltdown, the incidents of self injury when he gets frustrated....all of that kind of paints a picture that looks like autism.

so this is a good news bad news situation. the bad news is that we have to recalibrate our expectations. we thought he'd grow out of some of these behaviors, and that might not be the truth. the good news here is that we've got another label by which to describe him to people that dont know him. in the grand scheme of things isnt that what a diagnosis is? a descriptor/common language so that everyone can get on the same page about stuff?

so it sounds strange, but im oddly grateful to attach a name and a diagnosis to some of the things that have perplexed us about dom. being dom's dad has been a constant process of getting to know him. there's still so much in that head of his that i dont know, and in some sense it feels like we took a step forward with this. he's on the autism spectrum. good deal. what layer of the onion are we going to pull back next gommy goo?

and like the title said...a rose by any other name is still a rose. doesnt matter what a prescription pad or a doctors report says, he's still my dommy...and now we've got language to describe him and his need a little better than we did before...in ways that he cant do so for himself.

im grateful for that.

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