Charlie is now 16 years old and Wednesday morning I packed his book bag with store-bought cupcakes wrapped in brown paper (I'm not sure but I wager he might be tempted to eat them on the bus) and wrote a note in his communication book, thanking his teacher for helping him get this far.
Charlie had a fine day at school (he had two cupcakes) and two bike rides. Inbetween, we went for a drive and Charlie's insistence we go 'this way' turned into us discovering a fairly efficient way home via downtown Newark, in the midst of rush hour traffic.
Tuesday night Charlie's nervousness had risen (it didn't help that the barometric pressure changed and the cool-enough-to-turn-on-the-heat temperatures went decidedly in the opposite direction) and his mind was frozen around one request, 'shopping cart.' We had him wait a half hour, went out to the grocery store, Charlie looked for things that were not to be found -- or rather, whatever was driving his anxiety led to him asking incessantly for the one type of crackers (in a red box) the store no longer has. He was quite keyed up at that point and it was clear the request to go to the store was not a request but a manifestation of worry that set off Charlie's fight or flight response.
It's been so, so long that Jim taught late on Wednesdays that it seems likely Charlie's got his body programmed for it. We assured, assured and assured him that Jim would be home on Wednesday when Charlie got off the bus but words are just words, air, breath. Charlie has experienced plenty of moments when he was told 'it'll be okay' and it wasn't or when he 'just had to wait five more minutes and X would happen' and it didn't.
We got home Tuesday night all right and saying 'shopping cart' turned into a semi-joke. (I'm definitely still not in favor of taking Charlie to the store no matter how much he says the word, supermarkets having become as sensory overloaded for Charlie as Disneyland would be).
I had been reminded of words' uncanny lightness yet power earlier on Tuesday. Charlie had an EEG and, quite differently from about a month ago, he never tried to pull off the cap of electrons and sat equitably, iPad timer ticking down 41 minutes and me holding up another iPad while playing games; bingo (nice animations after winning a round), tic tac toe (rather boring), puzzles (which one could do in one of three different languages so I chose French, curious to review the names of the continents and planets in that language).
Yes, I played the games and Charlie watched and Jim sat opposite him and the technician watched Charlie's brain waves on her screen. It's been years and years since I sat at the little blue table we used to have and did Aba programs with Charlie but the memory, visceral, psychic, remains. Somehow the situation -- the task at hand of having him sit with the electrodes on-- got me to realize that my voice uttering words would register as requests for Charlie to do something so I was quiet. His eyes were glued to the visuals on the iPad screen; the sound was turned off, so the numerous jingle jangly noises kids' games are overstuffed with were absent.
A 41 minute EEG.
I had thought Charlie might have some 'lag' after such success and that in combination with worrying (against his conscious knowledge) about Jim being home or not was too much on Tuesday night.
I had hoped getting the nerves out the day before would mean a happy birthday. I am pleased to say it did and the birthday was quiet with just enough fanfare and so a good one. Indeed, the celebrating in the party sense is not yet begun.