Hard, Hard Questions: Residential Placement?

The death (said to be, on his death certificate, due to a seizure) of 16-year-old Jett Travolta has been the main story referred to if you look up autism news since late last week (despite his not being diagnosed with autism). There's been something of a surfeit of speculation about what is, to me as another parent of a disabled child, something that's just very very sad. At 16, Jett Travolta was just a few years older than my son Charlie and all the talk about seizures and medication and about the bathtub where he may or may not have hit his head touches something very close inside me. I don't know what life was like for Jett or his family, but just reading about something like this happening to a disabled child, makes me think about---about some hard questions.

Charlie does not have seizures----that is, we don't yet know if he does. It's been noted that the onset of seizures in autistic adolescents and adults is a "relatively common occurrence, having been reported for about one-quarter of the cases studied." During the past year, Charlie has entered adolescence early and fast, and it's been something very new for all of us to deal with. He's grown several inches and we speculate about growth spurts. Little boyness, in a physical sense, is gone.

Parents whose children are older than Charlie and autistic adults have noted to us that adolescence was not an easy time (understatement). Yesterday morning---Charlie's first day back at school---started slow and became wrenching in a matter of a minute and it was back to holding onto him and we weren't sure he could get on the bus (he did and his school day was good). As I wrote in my primer on advocacy, a few months ago, our school district suggested to us that we ought to consider a "temporary residential placement" for Charlie in the future, and possibly the not so near future. We were shocked---life with Charlie is simply our life---and asked the school district to do more to accommodate Charlie in his classroom. His teacher has been wonderful, attentive, carefully taking note of his learning style and of what motivates him. And things were good, and then came the disruptions of the holidays, and Charlie seeming to grow a little taller every day.

I have been learning more about residential placements, from my readings and have been hearing from some who've been sharing personal experiences, of relatives, of themselves. I keep thinking about all we have done to help him. I keep factoring in the reality of how little speech Charlie has----he could not tell us if something happened to him. I keep thinking of how much life for us is to be the three of us. I keep thinking; I stop thinking and sit down by Charlie, lying on his blue chair and munching some of the crackers he selected at the grocery store this afternoon.

I think about how, from 2.30 pm until he goes to bed, I'm always listening for Charlie's voice.

I think about how glad I am that he's right here with us.