So, with really no good choices, we’ve had Ray on his medication now for about a week. It’s been… interesting.
Ray is on Daytrana, which is a patch that provides the medication directly into the bloodstream. It’s sticky- and best of all, can be taken off when needed and can be cut down in size if needed. Unfortunately, it takes about 2 hours to kick in, and about 3 hours to wear off. So, there’s a lot of planning of WHEN to put on the patch and WHERE it should go. It’s supposed to go on his hip. But the stickiness of it means that it leaves a residue like a really gunky Band-Aid, so we’re rotating around where it goes. And it can’t go where it hits his underwear, and it can’t go where his pants rub against it, and it can’t go… you get the idea.
I can’t quite figure out if it’s a good thing… but there are some interesting results.
For the first time ever, my son could tell me how he was feeling. Of course, he was telling me “Mommy, I feel funny- all jumpy inside. This makes my anxiety worse”- but he did so in a calm, focused manner. No screaming. No grunting. Words. Words that showed introspection. WORDS!! We held entire conversations that had a beginning, a middle and an end. “What shall we do today?” “Let’s go to the museum”. “What is it about the museum that you like?” “It’s got cool things to play with.” See the give-and-take? I hadn’t really realized until this past week that while Ray has a lot to SAY, he doesn’t TALK with you. I could see “him”- the real, thoughtful HIM that is fractured by attention and sensory issues. He had focus!
However, what he focused on during Spring Break was controlling his anxiety. He used his words, true, but his words were all about how bad he was feeling and how the medication was giving him “jumps” in his legs and making his heart race. He looked panic-stricken a couple of times and said “Mommy, I feel scared, but there’s nothing to feel scared about”.
And his Tourette’s was much, much worse. He’s started spitting, which is just gross now. Tics? I’m ok with. People might look and wonder, but most don’t say anything. Clearing of throat? Also fine. But spitting? Spitting gets people agitated. Spitting is a problem. And there’s very little he can do.
Oh, he tries. He spent a great deal of his new-found focus trying to breathe through his need to spit. He’s started trying to aim his focus at something else in an attempt to reduce his tics. He read recently about a kid who focuses on a spot on the wall to get past the tic. Generally, it works. But so much of his time this break was spent with him staring at walls, that I started to feel concerned.
There was a list of expected side effects that we didn’t see- for example, reduction in appetite. Well, he never had much of an appetite, so we didn’t see much of a difference. He still didn’t eat much, but it wasn’t less than usual.
Of course, he was on Spring Break, so there weren’t a lot of highly structured activities for him to complete. So, I’m not sure how well he’s going to do in school. The teacher today said that he did “fine”. What the heck is “fine”? And to make matters worse, THE test, the state test, the test upon which moving up to the next grade is dependent upon- is next week. So, it’s very, very important that he be able to focus in school. The test is raising MY anxiety level….
I’m worried that if we take him off of it he won’t be able to focus at all. And I’m worried that if we leave him on it, he’ll focus too much on trying to control his Tourette’s. In either case, he won’t be able to focus on the test itself. Or on school, or on friends, or on all of the things that make up his life.
Which just leaves me unfocused all the way around…