This is part 5 in the series Two Children, One Spectrum. If you’re new to the series, you can catch up here:
Part 1: Two Children, One Spectrum: A New Series
Part 2: Two Children, One Spectrum: Communication
Part 3: Two Children, One Spectrum: Feeding Issues
Part 4: Two Children, One Spectrum: Sensory Issues
Today Jen, from Anybody Want a Peanut, and I will be writing about behavior issues.
This is by far our biggest challenge. Moe has many, undesirable behaviors. We are on constant vigilance in our house.
Moe can be aggressive, especially when he’s frustrated or we say no, though sometimes it seems to come out of nowhere. He scratches, pulls hair and bites. These are usually directed toward an adult, but Moe has been known to grab or even bite the dog or his sister. Jelly, who is five, loves Moe, but is also scared of him and we spend all of our waking time running interference between Moe, Jelly, and the dog.
Moe is also impulsive, so will, for example, walk into the kitchen and just start splashing in the sink, or go to the bathroom and pump all the soap out. For this reason, every room in our house has some kind of lock on it. Other than the main family room, the only room Moe has free access to is his room.
Moe doesn’t really play and it is hard to keep him engaged in an activity for more than a few minutes. We are constantly exhausted with his energy, but he is usually well behaved when we are out. This can be stressful too, but we are generally able to do things like go out to a meal as a family. When we are home, however, Moe gets bored, and that boredom often manifests itself in impulsive or hyperactive behaviors, like running up and down the hall, crashing into walls, or climbing. I had no idea that “bouncing off the walls” and “climbing the walls” could be taken so literally.
Moe also has trouble sleeping, although thankfully that has gotten much better because of medications. For many years, however, Moe had serious trouble falling and staying asleep, even with melatonin.
I’ve been putting off this topic because I don’t like thinking or writing about behavior. It brings back fresh, painful memories that I’d rather keep buried, not that they’re ever very far away from my conscious thought.
Beginning at age 3, Connor had challenges with aggression. I can’t even write it in a straight-forward manner. Let me try again. At age 3, Connor became aggressive. His aggression was infrequent at home, but was very frequent in the daycare, and later, the school setting with peers. He had no ability to handle his frustration and would immediately hit, push, or kick another child that did or said anything that made him angry or upset. Over time, the aggression became a regular occurrence, resulting in him being kicked out of three different daycares and two summer camps. Can I blame them? No, I suppose not. But I do wish they had a better staffing ratio to actually serve children with disabilities like they say they’ll do.
There were no services available to us. None. I even called Easter Seals and was flatly denied because they would not serve a child with a history of aggression. The only alternative was a special needs daycare that cost just over $1,000 a month. We scraped by. I wondered constantly how other people manage in these situations when they simply don’t have the means to shell out that kind of money.
With maturity and medication, we eventually got the aggression under control. But it took years; painful, guilt-ridden, gut-wrenching years. Between the guilt of not being able to make my child stop hurting others, and the terrible knowledge that he couldn’t control it and was constantly labeled the “bad” child, we all suffered.
And that’s all I have to say about that.
There are other behaviors to mention. There was and still is a lot of scripting. TV shows, movies, commercials, etc., he repeats lines that appeal to him for whatever reason. If I ask him why he does it, he can only tell me that it’s because he likes to do it. Fair enough. It’s mildly annoying, but livable. Sometimes it’s even rather funny when he tells me I should buy Oxi-Clean so we’ll have whiter whites, or begins singing the good neighbor/State Farm song at just the right time.
The other major behavior is arguing. Connor tends to argue or debate almost anything. Sometimes it’s from a desire to better understand the request, but other times it’s a desire to have control over the situation. The desire for control sometimes stems from anxiety, but not always. This is the one behavior I understand the most because I’m very similar. It’s difficult to articulate, but the best way to put it is when I “comply” with a request or demand, it’s like a little piece of me was taken away. Connor isn’t able to articulate it, or even explain why he does it, but that’s my best guess as to what’s behind that behavior.
Last, but not least, is sleep. He’s always had sleep issues and still does. We use Melatonin, but there are still many nights that he simply can’t fall asleep. We’ve developed a routine where he must stay in his room, but doesn’t have to sleep (because we certainly can’t make him). Often he’ll pull out one of his Minecraft books and read, and that’s okay with us.
Next week we’ll return and cover the topics of independent skills and school. Feel free to write about your child and link your post in the comments.