That Was Then, This Is Now

Charlie and Jim getting ready to bike on the road by the river

Charlie did good at school, as his teacher emailed me and Jim noted. He took the bus home and then wanted my dad to sit in the front seat of the black car.

It was another instance of Charlie having some idea, some image, in mind about how things should be when my dad and mom are around. Once upon a time, they’d drive our black stationwagon on their visits, back in the day when my mom and dad took Charlie to all manner of places (the big aquarium in South Jersey, a local zoo, New York city, shopping). 

But that was then and now the black car is limited to local trips (though a year ago the dealership told us if we didn’t get the couple/several thousand dollar repair the car would be a goner—and here it is still running, if a bit balkily). And, my mom and dad don’t take Charlie on outings with just the three of them.

And, the longer the old black car scenario (Gong Gong and Po Po in the front seat, Charlie in the back seat), the longer it would take to ease Charlie out of it and up to the present moment.

So Jim continued to put the bikes on the back of the white car and explained that—and I’m quoting heavily from his texts as I was not there, being in Ottawa and spending some 9 hours listening to papers about the social construction of autism, the problems and limitations of discourse about autism, inclusion and community and rights, science and ethics, and a great deal more —well, here’s what Jim said:

….cha[rlie] actually prefers the right way of doing things be modeled by us for him

…. when we do what should be done it actually organizes reality for c ….

Some little strategies about how to proceed when Charlie is trying to recreate what used to be, or rather his memory/idea/image of what used to be (I’m thinking again of a comment from Kent on memory and ‘choke’ and how this affects our ‘short term ability to do things’)—it helps Charlie to see us really doing things to help him ‘organize reality.’ 

This might seem a simple principle to practice: All we have to do to get Charlie to do some thing when he’s insisting on doing something else is, to do it.

What makes it harder: Charlie’s own very insistent verbal requests for something else. Charlie seems inclined (able?) only to say a very few words in response to questions such as ‘what would you like?’ and ‘what do you want?’, perhaps because it’s hard for him to retrieve more and other words, perhaps because whatever he’s saying (‘ride in the black car’) is the first response he ever learned to a particular question asked when my parents were visiting? I’m not sure. I do know, pressing to hard with those sorts of questions, makes Charlie’s anxiety level go up up up.

Friday afternoon Jim’s modeling worked. Charlie didn’t get into the black car and he and Jim and my parents drove back out to New Jersey horse country. The sun was starting to set by that time so Jim had them bike by the river there, where there’s an open path; the trail, being well-covered with trees, gets darker earlier. 

Later after a ride and dinner, Jim and Charlie were in a school playground and there was a ‘moment of duress’ when Charlie became over-insistent about going into the (closed and locked) school building. This too passed. Jim and Charlie had ridden their bikes by the house of Jim’s friends and I’m sure Charlie picked up very much on all the emotions

More and more, it seems to me, you just have to wait a little (sometimes a lot) and let there be a bit of a delay and uncertainty, and (sometimes very slowly, very very slowly) Charlie works it through and then is ready for what next awaits.

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