Just What We Want
Write about vaccines, get lotsa comments; a few accusations that I'm somehow, albeit secretly (so secretly that I don't even know about it myself) employed by Merck or "Big Pharma Inc."; statements that we and other families with children with disabilities "just want to know the cause" and are daily overwhelmed by the mystery of what our children have and of what to do for them.
I aim, some might say, a bit lower.
The main thing I'd like to know is how to keep making it possible for Charlie and us to have such good days as we've been having. With each passing day that Jim and I are fortunate to share with Charlie, we can see, more and more, why Charlie is as he is; why he struggles with anxiety and obsessions and compulsions, why he can be hyper-attentive about some things at some times and quite unable to stay focused about other things at other times.
Charlie is like us. Sometimes it seems that a lot of things from both sides of our family—things that people often don't want to talk about, like depression, psychiatric conditions, OCD, and a host of other things "not otherwise specified—have all come together in Charlie. I don't know why that had to happen for our boy but I am glad that Jim and I are Charlie's parents, as I think, due to some of the things we've ourselves had to contend with, we're a bit more fortified to help him.
Last week (after the, well, agony of snow days + President's Day = days off from school) was four fine days, mostly thanks to the return of Charlie's preferred "school then home" routine. (Yes, I am already feeling some trepidation when he has Spring Break in April.) Saturday turned out to be another fine day. Charlie woke up around 8.30, went into the bathroom, and then went back to bed.
No big deal—-yes big deal. In the not too long ago "not always good ol' days," it was not unusual for me to start the day with a total changing of the sheets, pillows, and blankets on Charlie's bed. Certain connections between the body (needing to perform a certain basic function) and the mind (telling other parts of the body, get out of this bed and into the bathroom pronto) just did not seem to happen for Charlie. There are devices one can buy and programs and protocols to follow to address this, ah, soggy situation, but Jim and I felt it more important that Charlie slept through the night (especially after some years when he had a lot of sleep problems); I always prefer piles of laundry to an unhappy boy. Though, it is true, it's not a very happy circumstance to wake up in a cold, damp bed.
So it seems that body-mind connection is getting made for Charlie. Too, I think he used to think, "once I get up I can't go back to bed even if I really want to." Seems he's gotten more flexible about this (and therefore, more happy: who doesn't welcome the prospect of a few more minutes in bed?).
Saturday passed in walks; a trip to the grocery store during which (gasp) Charlie wanted to buy neither sushi nor any sweet items (except for watermelon; I think he knew that we had plenty of cavity-inducing items in our cabinets already); a mid-day rest for both dad and son (so I did some work on my too-often-put-aside translation); dinner at a friend's house.
Charlie actually spent most of that dinner in the white car, by his choice. He'd visited these friends two summers ago and, over the course of a few hours, made his way onto the porch, into the living room, into the back yard. Last night, he ventured in on his own after a bit, said "hi's" and "no's" and then went back out (the white car has become quite the refuge). And then, "see ya next time" to our (very kindly and wonderful) hosts who'd come out to say good-bye.
While I suspect Charlie meant pretty much "bye" with that "see ya next time," I'm going to take him, and keep him, to his word. I think he might well have hung out in the back and front yards, and on the porch, if it had been warmer (and these friends are so kind and wonderful that I'm quite sure we'll be visiting again).
Once home, and after I'd gone back out to the car with a flashlight to retrieve some miscellaneous blue items Charlie likes to have near by (found one on the snow), Charlie took off his shoes and socks and fixed his gaze on us before saying:
To which we had no objections.