trying

This summer we went to Morgans Wonderland. In case you’re not familiar with the place, Morgans Wonderland is an inclusive amusement park designed for folks with disabilities. We went specifically to check out their new water park, and everyone had a good time.

I had one experience there that will stay with me for a long time. Dom and I were over in one area of the park walking through some sprinklers and we happened to walk by a mom wheeling her daughter (who had some varying level of paralysis) through the same water features. The child didn’t seem to be reacting to the water all that much…and at one point the mom looked over at me, smiled, and said “I don’t know whether she’s enjoying this”

Its hard for me to define or describe the tone in which she said it…because on the surface that seems like a bit of a downer statement…but it was said with so much hope, and so much dedication, and so much love. The follow up to “I don’t know whether she’s enjoying this” was an implied awkward “I want so bad for her to enjoy this…and I’m going to keep trying things she might enjoy”. There was so much effort in what she was doing.

I think about that often, and I think about it especially around this time of year. Buying Christmas presents for Dom isn’t easy. It involves a lot of thought about what he likes doing, and how we can get him things that will engage him both cognitively and in a sensory capacity. We look around at therapy equipment, we look at his functional capabilities…we do our best and all of it is done with that same sense of hopeful “I don’t know whether he’s going to enjoy this” mentality.

Sometimes we miss. But sometimes we nail it. We had a rubber inflatable donkey we bought when he was a baby….we figured it would be something he could rest against and climb on as he tried to figure out the whole gross motor skill thing. And he absolutely adored the donkey (lovingly named “ponkey donkey” by his nonnie). We nailed that one. And nothing feels better than to get him something he loves.

Christmas and birthdays are hard. Heck they’re hard for any parent of any kid. But implied within that continuous “I don’t know if they’ll enjoy this” part of buying presents is a deep sense of resilient hope…that even if they don’t enjoy this, we’ll work tirelessly until we find that thing that they enjoy. And then we’ll sit back and revel in their enjoyment.

“I don’t know if she’s enjoying this” is a statement that will be in my mind for a long long time.

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.