We went down to the beach yesterday and Charlie and Jim had a splendid, sun-warmed, crosswind blowing, 18 mile bike ride.
It was our first trip back to the beach since, while I was sitting down to dinner with my students in Delphi, Jim texted me that, just before they had gotten to the beach, Charlie had gotten very upset at my mother. A very tough situation had followed, rendered all the worse by the fact that the four of them (my dad had been sitting in the front seat of the white car, my mother in the back with Charlie) were nowhere near our house. Things turned out all right-- Jim and I are, as you know, no strangers to extremely difficult moments that involve a flailing, now adult-size, child---but to say it was harrowing is the greatest of understatements. I did think I might have to head back home, which would have meant the end of the Greece trip for all of us. I was the only professor with my nine students, my colleague who was also to come having had to stay home as her grandmother had passed away the morning we departed.
Things turned out all right, the trip went on (and was exceedingly fabulous), Jim and Charlie and my parents made it through the week (though three-quarters of them have spent the pass week coughing and sick). My parents remain unflinchingly loving of Charlie, even when he has his very worst moments.
I have to say, it all made Jim and me wonder, what happens when there aren't people around who care so much for Charlie that, when something really difficult happens, they don't just write him off, up the psychiatric meds, and pronounce him only suited to live in an institutional setting?
I don't know the answer or if there is an answer. Obviously we and Charlie's teachers and therapists work everyday to teach him other ways to communicate everything from a stomach ache, an uncomfortable shirt, to severe distress. We seem to be doing a decent job with the day to day things; no small coup, considering Charlie's minimal verbal ability and apparently limited capacity for recalling words as he needs them. But when anyone is upset, fearful, tired, anxious, grouchy, it can be far harder to follow all those nice protocols you've been taught.
One thing I can say: That night in Delphi, as the students were helping themselves to big slices of bread and trying out the olive oil, I mentioned what had happened with Charlie. I also said that I was going to be very rude and spend the meal texting and staring at my cell phone.
The response was universally sympathetic, kindly, and concerned. The students asked about how my mother and Charlie were, and some did so for the rest of the trip. In my teaching, I have frequently mentioned Charlie and life with autism, but not so much with this group of students, who I started the trip not knowing as well as others on previous trips. On meeting a number of them last Tuesday, I was pleased to discover that the sense of camaraderie and (not that they would put it this way) fellowship they had grown to have after spending several days together traveling in a foreign country had remained.
It makes me feel hopeful, to think that there are more than a few out there who have such sympathy about Charlie. I like to think that no one can take care of him as well as Jim and I do and I have a hard time thinking that, should this indeed be the case, Charlie will flounder on finding himself reliant on others who don't do as we do. But I suspect I will have, albeit gradually, to let go of this fear, and teach Charlie to learn to be with others. Certainly it means a great deal to know that some others might be so kindly disposed towards him, even in the tough moments.
After we got back from the beach, Charlie and Jim rested a bit and then did another brisk bike ride. Despite all that exercise, Charlie did not go to sleep past 11. And, he didn't go to sleep in his bed, but stretched out on the big black couch, across the room from where Jim and I were sitting. I rather think, he wanted to share in whatever we were doing.
He is great company, is Charlie.
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