Dealing with Day-to-Day Health Concerns (when your child can’t always tell you about them)
Thanks to everyone for your kind wishes and comments about Charlie and our latest ER experience. The pediatricians' office called us yesterday afternoon to check in on Charlie. I need to stop by there later this week anyways, to get a form from Charlie's school filled out. I'm hopeful that we'll still be able to take him back there; we've already been rethinking our waiting room strategy. (Most likely, we'll have Charlie wait outside or in the car with Jim.)
This latest experience has highlighted some of the challenges of dealing with health problems with Charlie. I don't mean getting EEGs or blood testing, or any of the "health issues" that one might be seeking to "treat" in a child if you're following various "biomedical" protocols. I mean dealing with day-to-day health issues, like cutting fingernails (I stopped trying to do this on a sleeping Charlie when he was 5 and very slowly taught him to let me trim both his finger and toe nails) or removing a splinter (a two-person operation at home; another time, Charlie got one on the sole of his foot, and a doctor from the pediatricians' office removed it). (Yes we have been through many a visit with them.)
One of the hardest things is simply knowing that Charlie has something like a hangnail, a splinter, or a sore in his mouth. When he was about 7, we were flummoxed because Charlie kept saying "pi-ah-pi-ah," and little else. He still let us brush his teeth and ate as usual. Then a speech therapist happened to get a look deep inside his mouth and noted that he had a sore. As it had been some days, there was—as we were horrified to discover –an infection that poor Charlie must have been patiently suffering through. Fortunately, a mixture of maalox and Benadryl applied regularly to the sore (suggested by the doctors' office) led to its going away quickly, and it was "pi-ah-pi-ah" no more.
We only found out that Charlie had bit his mouth on Tuesday because of a note from the school. Again, Charlie's appetite was the same and we didn't note anything amiss until Wednesday, when he started pulling at his lower lip. Still, he looked all right until (of course) Friday—Christmas—morning and then the "excitement" of the day after Christmas in the ER.
Charlie can talk but mostly about (1) things he wants; (2) things that he likes a lot (and often no longer has, like Barney); (3) people he likes a lot. That is, he's not able to use words to describe his interior state, whether physical or mental. If we don't see obvious physical symptoms in Charlie, we pretty much have to go by changes in his behavior and, in particular in self-injurious behaviors> When Charlie was younger, if he fell or even just stubbed a toe, he'd often hit his head—maybe to further "register" that the pain he felt was, indeed, pain. While we're always attentive (all those years of ABA) the "antecedents" of Charlie's behaviors, sometimes it just seems like so many things can be possible "triggers" for a behavior, some more obvious (hearing a fork drop, for instance), some less so.
On Saturday, it rained and rained non-stop—a big change in the barometric pressure from the day before. Even though we spent most of the day inside, the drizzle and downpour were constant and were pretty much insult to injury for Charlie on Saturday morning and throughout the day.
Sunday it was sunny and very mild. The happy result of all of that rain was that most of the snow was melted and so, after a morning car ride and some quiet time in which I read over the social story about being "on vacation" to Charlie, and a number of "no's," Jim got out the bikes for a late December bike ride. Charlie got up from the couch and asked for "helmet," and the had the biggest smile on his face as he took his bike out into the street and ran back and forth. They took the (not so) new urban route and, when Jim ran into a friend, he was able to stop and briefly chat before catching up with Charlie.
The forecast is for back to freezing cold temperatures in the upcoming week which is, of course, also a school-less week. I'm glad Charlie has it off as he's definitely got "something," and both slept in and went to bed early. Jim and I are both off from teaching so we can spend lots of time with him and keep a watch on him—because, really, when it comes to keeping track of Charlie's health, I don't yet know of a substitute for careful, loving vigilance.