Having a child with Autism no matter the age is daunting to say the least but once they’re an adult in the eyes of the state they pretty much cease to exist other than as a number on a file which they send money to and a medical plan they administer. Any other services you secure for your child after age 18, you advocated and fought for.
Which is why getting a doctor for my son Colin was such a big deal after years of having doors slammed in our face. As far a neurological support goes? So far nada. But we’ll have to see how that goes because I’ll be pushing hard for some kind of support come Monday.
For the last six weeks, Colin has been having multiple daily meltdowns. This has been a recurring cycle in his life since he was born. These cycles of extreme agitation don’t always occur bang on every eighteen months but they’re close enough to be expected. Of course because he’s non verbal, there’s no way to know what set off the episode and once he’s in the grip of these things, there’s no way to talk him down as he’s well past any sort of reason at that point.
Some episodes timing are impeccable. Usually between 12am or whatever early morning hour his disorder decided to go off at. Last night started just after midnight and ended around 2am. He actually ended up taking a shower as he looked like he’d just run a marathon. That was bad enough but he seemed pretty intent on reentering the behaviour this morning upon waking.
It’s times like these that leave you pretty raw as a parent and the worst part is you feel pretty helpless as far as supports go.
It doesn’t help that he can’t help himself. At 2am, things feel pretty personal. The other side of the coin is lack of sleep exacerbates my own symptoms of PTSD. So today I feel stretched really thin emotionally. Which means I have to question every action I take regardless of what it might be.
I took these series of pictures with a very specific theme in mind. Colin lives in a very insular world of self. I sometimes get the feeling that for him, he’s the rock and the rest of the world, myself included are the water that flows around him. If he can’t touch it, eat it or drink it, it really doesn’t matter to him. He’s always walking ahead or wandering off and while for the most part he circles me, there are times where if he’s comfortable (too comfortable sometimes) in his environment, he’ll just up and go. It’s why I’ll take him by myself to the Bike show which is a reasonable size and easy to see around by myself but it’s a full family mobilisation to hit the car show where he will up and vanish for hours if you take your eyes off of him for a second. So I always feel that even though I’m with him, he’s walking alone.
Now I want to be clear, I’m not speaking as if this is the way it is for all parents of an Autistic child or Adult, it’s just mine and my family’s. This cycle will pass and we’ll have some new temporary mechanisms to help him through these episodes (temporary because change is the only constant here) and hopefully, fingers crossed we’ll have some neurological support to help him, where he needs it.