This is a picture of Dar enjoying my tickles. That’s great when it happens. Not pictured: all the times he doesn’t want to be tickled. During that vast majority of his waking hours, what does Dar want?
For something like eight years, we never knew what Dar wanted. I can hardly understate the difficulty and despair that goes with living this way.
Ever hear the phrase “be careful what you wish for”? Right. Well, be careful wishing for knowing what your kid is wishing for.
In some ways, life is now easier. On the other hand, what he wants isn’t entirely easy for us, and may not be ideal for him.
On normal weekdays, Dar has what you might call a long workday. School for six hours is followed by therapy for three hours. After that, we figure he needs down time, and we also prefer down time for ourselves.
Down time gets extended to most weekends and, now that summer school is done, a lot of summer days. So he’s been doing a LOT of what he likes most. On one level, bully for himmmmm…on another level, hmmmmmm…
Dar has five preferred activities. In ascending order of difficulty for us, they are:
1. Eating. He loves to eat. This is actually easiest for us. If he’s screaming for no reason we may just stuff a graham cracker in his mouth, as you do with a toddler. Actually, he generally eats healthy food. If he just ate all day, we wouldn’t really have any problems other than earning the money to keep food flowing into the house.
2. Watching TV. When this works, it’s great. Electronic babysitter, man. I have come to love the sight of Dar on the couch just staring at the boob tube. One problem is that TV doesn’t seem to hold his interest for more than maybe 30 minutes. (He may be healthier about this than I am.) Another problem is that he prefers Sesame Street, and as much as I admire the show, I didn’t know when he was born that I was signing up for an entire decade of watching it daily.
3. Watching videos on an iPad. When this works, it’s…okay. He burns through a lot of battery. He avoids using his language system (on the same iPad) because he wants to get to the videos. If the Wifi/internet is slow or not working for whatever reason, he melts down. On youtube he rarely lets an entire video play; he starts one and then ten seconds later presses one of the links on the right. I guess that’s some kind of ADD, but it’s annoying and possibly not very helpful to Dar’s development. At other times, he plays the same songs over and over and over and over. Lately, his jam is a Pharrell Williams/Elmo/Cookie Monster song about reading a book. It’s a terrific message. That I don’t need to hear every five minutes.
4. Taking a bath. I love that Dar doesn’t mind getting his face/head wet, a lesson that I wish his brother would learn. I love that the effect of Dar’s hydrophilia is to generally keep him clean. I don’t love that every time we leave Dar unsupervised in the bath, we get a wet bathroom floor. That floor water seeps down into our garage and causes all kinds of problems; I just had our plumber out to the house yesterday, and asked about it, and he said it’s not the kind of problem they can fix. “You gotta stop letting your kid make the floor wet.” Right, so we have to sit there with him while he splashes. Which is okay, but it wastes a lot of our time.
5. The hose. Dar wants to spray the south wall of our house with water from our garden hose. Like, all the time. A year ago, we had the plumber replace the spigot handle with the removable kind so that we could control it. At the time we hoped we were over-reacting, and the hose was just one of Dar’s many phases that he would eventually outgrow. Nope. Nowadays he even insists on me leaving the handle so that he can keep control. The hose is a problem for several reasons. The paint is all peeling off the south wall, and our yard is now littered with little paint chips from the 1940s that present lead danger. We have to clean those and repaint the wall now. Furthermore, the hose water leaks into the street, causing a wet sidewalk, which must be annoying for our neighbors. Further, if we have any guests in our little in-law unit, they pretty much have to walk by this kid who may douse them. Further, Dar likes to be naked, so he’s out in the backyard the way God made him just shooting a hose. Not a great look for the neighbors. We can kind of live with all that, but I find a lot of it annoying. So I bring Dar inside and he freaks and freaks and freaks. This will have to wrap up somewhat when the weather changes, but…sigh.
You might think we could use these things to motivate him to do what we want. Sure, you might think that.
I think my biggest issue is that this list has no #6. I want Dar to want to do other things. Mostly, he doesn’t. They say when God closes a door, He opens a window. Our biggest problem is knowing all the doors that are closed to Dar. Our saving grace now is knowing what he wants. We just need to expand his personal Overton window.