Charlie came out of his school with an aide beside him Wednesday afternoon, went around to the back of our car (it's a small SUV), opened the trunk, put his bookbag and swim bag in, and slammed the back down. And got into the car which, SUV or not, pretty much only fits three people.
Charlie requires the whole backseat.
He has---as you may have noticed in my photos---gone quite wiry (noticeable when comparing beanpole Charlie now to the rounder boy of a year and some ago). This is the result of: medication change (it's been a year since Charlie stopped taking Risperdal), lotsa lotsa exercise every day (which seems to be having the additional benefit of helping him lessen things like SIBs), genetics, one growth spurt after another (Charlie is, as also evident in the photos, almost as tall as Jim). And a long-limbed, long-legged boy needs to spread those legs out when sitting in the car----hence our five-seater car has become a three seater, and only in part because of the stuff Charlie likes to bring with him.
Now that he's 13, he is become a teenager, something I've realized I've been dreading for, oh, the past 13 or so years. When Charlie was around 8 and looking me eye to eye---and, too, at the start of what was to become five years of serious behavior trouble (which has been something we've had to deal with for pretty much most of Charlie's life, but a bigger, taller, child is---let's face it---much harder to help)---8 was when I could see the little boy was gone and that we were soon going to have an adolescent son---a teenager.
Of course, every parent has to face their child growing up. But when my child is disabled, and has had a much slower, much more irregular, development, and I really didn't know what 'growing up' would look like for Charlie. I read other parents' accounts and autobiographical accounts, read what professionals and caretakers and 'experts' and researchers had to say, read an awful lot of really saddening, maddening articles in newspapers. Some of it was hopeful and loving. and much of it was tough and terrifying.
Saddening, maddening, tough and terrifying: Yup, those all describe what the past years (starting with Charlie entering puberty at the age of 11) have been like. I so hate to say it, but--when Charlie was a preschooler---I would not have wanted to hear what I'm writing now. Things seemed so tough already. Charlie struggled so much (still does). Charlie couldn't talk, slapped his head, cried and screeched when we tried to have him walk a different direction down the sidewalk. I wouldn't have been happy to hear that my child would always be in a special ed classroom, would be watching the PBS kiddy shows (the same ones that he first saw when he was 2 years old), and would have made it possible for me to break into fairly accurate renditions of numerous classic Barney songs at a moment's notice.
(It's just me, but I really do not like Barney and don't get me started about Baby Bop.)
Hopeful and loving: These words equally describe what life with Charlie has been like, even at some very dark and difficult times. We loved him the first moment we saw him at Missouri Baptist Medical Center late on May 15, 1997, and we've loved him even in those difficult, difficult-est moments, all the way to him being tall enough to take hold of the trunk door without having to strain and stretch.
I, though, had to stretch up my arm to help him cover his mouth when he coughed yesterday evening, as we waited for our order at a Mexican take-out restaurant. Charlie had had a very good day at school (they'd gone swimming, too) followed by a bike ride with Jim and a long walk whose first half was more of a combo sprint/power-walk. It was no surprise that he was hungry and he was very serious as we drove to the restaurant. As we waited, he suddenly turned to me and said,
'Chinese food! Eat your Chinese food!'
And he smiled and I said something to the effect that, no, we were waiting to get Mexican food, a burrito. Charlie smiled bigger: I had gotten his joke, and he repeated it a few more times. I provided what I guess was the punch line.
Sharing a joke and using the trunk of the car on his own, without my urging: These things make me hopeful and make me realize, a growing up boy---a boy who insists on getting himself out of bed, showered and dressed and ready for school all on his own; a boy who likes those kiddy shows and who is becoming a jazz fan---is something, someone, great and even grand.
I think I may be getting a glimpse of what a grown-up Charlie is like, and, while there's a lot more growing up for him to do, I'm liking what I'm seeing.