I don’t cover a lot of things as a parent because, because it is harder for me to spot drama there. That’s not to say we don’t have episodes, because we do. All the time.
Thomas and Percy are typical siblings in many ways. They do fuss, argue, fight and tease each other as 7 and 4 year-olds might be prone to do. Percy might be described as the more “typical” of the two, because he is relatively trouble-free and compliant. I think he’ll be dropped from special education within a year or so.
Thomas is a different sort altogether. He requires constant diligence. I’m talking ALL. THE. TIME. He needs to be watched almost every single moment of his waking hours. And that is not small thing when he gets up at 5:30 most mornings. He mostly gets into things. He has always had a thing for getting into the refrigerator. He likes to look over the pantry when it isn’t locked. But by far, his biggest thing is water. Water, water everywhere! He’ll spend gobs of time in the bathroom playing in the sink, washing his wooden trains. Wood and water don’t go so well together. In any case, he’ll also get into the soap, toothpaste, shampoo or whatever he gets his hands on and makes a huge, gigantic mess. Stuff is everywhere!
The other day during Sunday school, he snuck out and into the bathroom, getting the front of his shirt all wet. In church, i was about ready to take him outside, which I have had to do the last couple of Sundays. In fact, it has been intense with Thomas all summer long.
He has tested positive for strep throat several times this summer. Jane has begun correlating his more difficult behaviors with possible infection and she has been right several times. The maddening thing about this, is that he has no other apparent symptoms! Jane started taking him in to the doctor last year when his behavior was getting too bad and the strep screen was positive almost every time. He would undergo a 10 day course of antibiotics and be okay for a bit, but a few weeks later it was all back again. It was absolutely crazy, because he didn’t complain of a sore throat, he had no fever and only occasionally had swollen adenoids. I was beginning to suspect that maybe the screening was all fouled up. They did some cultures, and these showed up normal.
I also admit to wondering if Jane and the pediatrician were both going loony. I have never heard of asymptomatic strep whose only marker was increased behavior difficulty. This is not the sort of antecedent most behaviorists look for when doing a proper analysis. But there appeared to be some correlation, nonetheless. Jane took Thomas to an ENT to discuss the possibility of having Thomas’ tonsils removed. The ENT did not recommend this and is the one who gave Jane the name to pin on this anomaly: PANDAS. I had never heard of it, either. Apparently there is something to it and the NIMH is looking into this apparent OCD/autism/strep connection. I’m still skeptical, but not as much as if I hadn’t witnessed this sort of thing with my own eyes. Thomas has been diagnosed and treated for strep at least 3 times in the last 9 weeks. Percy had it once, Jane had it once and I probably had it once back in June. Back when I did my bus physical in July, I had them do a screen on me and it turned out negative. The ENT seems to think Thomas is some sort of carrier but isn’t certain exactly what to make of it. Thomas tested all normal yesterday, so at least we have a NORMAL result on something!
As if autism didn’t have enough baggage attached, with digestive disorders, neurological disorders, immunity disorders, allergies…there seems to be some sort of other mystery illness to tack on to the list. Like all the others it seems to defy explanation and reason. Like the other things, it is difficult to see and identify. Like the other things, there are correlations and links that are not clear. Like the other things, there is no simple treatment or preventative. I’ve just learned about the existence of PANDAS and am already sick of it!
This is probably another reason why I blog infrequently about stuff with the boys. It’s harder to be a half-way objective observer/commenter/participant when it’s your own child. There are feelings attached to everything I do, but with the boys it is sometimes too near to be able to focus. I know other parent bloggers who do it a lot better than I do so I prefer to let them tell that side of the story while I focus on the little universe of those with severe and profound disabilities and those of us caring for them. Being their teacher is sometimes difficult, but being their parent would be infinitely more challenging. So being a teacher allows me some semblance of detachment from the parent life, although neither teacher-life nor parent-life are ever far from me.
8-17-2010 update: Here’s a video of a doctor talking about PANDAS: