A Baffled Head on a Stiff Neck

What a week it’s been! Let me tell you, you do not want to be around this kid when he’s getting sick. First a cough and cold, now pink eye! Yeah, we only did two days of school this week, and boy were they challenging. It seems that sickness urges my boy to be stubborn and rude.

During our school day, he has the opportunity to earn three cones, one for each set of work jobs he does with the right attitude and behavior. They’re these cute miniature road cones I picked up at the dollar store. For each cone earned, he gets 10 minutes on his favorite computer game. He’s gotten really obsessive about “the dragon game” and I got tired of him asking for it all the time, so I decided to use it as an incentive while simultaneously limiting it. Two birds with three cones. That was terribly cheesy, but somehow I couldn’t resist. If he earns all three cones, he gets a “Superstar” cone that is worth a treasure box toy. Overindulgent? You betcha. Desperate times call for desperate measures. My child well learn.

He “earned” a superstar cone Monday by the hair of his chinny chin chin. He didn’t really deserve it, but this is a semi-new system we’re using and I want as much positive reinforcement a I can reasonably give. Tuesday, he didn’t earn a single cone. The frustrating thing about positive reinforcement is that there has to be something positive to reinforce. Thus I end up resorting solely to punishment, leaving us both escalating in frustration. It is mildly reassuring that upon looking back I can attribute some of this behavior to oncoming sickness.

I’m guessing it’s also due to the sickness that he’s been so much more rigid, insecure, and obsessive. It makes sense. All off our worst traits emerge when we’re sick. I just haven’t realized until now that it’s a double whammy for autistic people. They have those same “worst traits” to contends with that we do, plus an explosion of autistic traits that they can normally control reasonably well. Sounds kind of scary fire them actually.

I’ve been seriously working on getting our household clutter under control. The clutter has been in control of us for years, so I’ve got my work cut out for me. But I’m feeling empowered now that I’ve got a good start. Javan has not made this process easy by any means. When I’m working on sorting items or cleaning, he is so closely underfoot that I can hardly breathe. “That’s where my body is! Your body can’t be there too!” “Personal SPACE!” I have said these and other similar phrases so much that even my internal voice is hoarse. It’s completely exhausting.

I’ve been so frustrated about it. I assumed the problem was that I wasn’t paying all of my attention to him. And that is probably a large part of it. As I cleaned out and reorganized my lower kitchen cupboards, he was constantly in my space doing things to purposely annoy me. The thing that shredded my nerves the most and the fastest was when he continually walked through the kitchen shutting all the cabinet doors. He did this calmly, not as a personal affront to me, but because the doors are supposed to be shut. A kitchen full of open cupboard doors is probably as nerve-grating to him as him being always in my personal space is to me.

But it wasn’t until later in the day, long after I was finished with that chore, that he began an odd behavior that finally shed some light on what the main problem was. He was now continually walking through the kitchen opening all the cupboard doors one by one, peering in solemnly and moving on to the next one. Or stopping this activity altogether and becoming abruptly angry or mean. I asked him several times why he was doing that. It just didn’t make sense. It’s not like any of my kitchen things were of value to him. Why should he care if I toss some out and reorganize the rest?
I wonder how many times I ask him a question and he doesn’t answer me because I didn’t ask it right.

Not long before bedtime I finally asked it right. “Is something about the cupboards bothering you?” He nods. “What bothers you about the cupboards?” He shakes his hand back and fourth in a too-quick expressive motion that indicates everything inside the particular cupboard he’s currently examining and says, “This. Just. All this.” It’s easy to see that whatever is bothering him, it’s extremely difficult to express, either because he’s overwhelmed or because he’s still figuring out for himself what’s bothering him. Finally he says, “It’s too empty.”

People don’t like change. Autistic people despise change. Even minor, insignificant change that hides behind cupboard doors making itself easy to ignore. He knows change is there. He cannot ignore it.

He did another interesting thing while peering into that cabinet. He saw the pipes to the kitchen sink. He instinctively reached for the union (so my husband says it’s called. I call it the joint thingy that turns.). As my husband is telling him not to mess with that, he looks up and says, “It’s loose.” My husband bent down, gave it a twist and said, “Wow. That really is loose.” Remember that post about the loose bolts on the McDonald’s playground? Well my conviction that Javan could one day make the world’s best quality control engineer has been exponentially increased. I bet those guys make good money too.

Now if I could just get the kid interested in learning to read. We have this little set of phonics readers I found at a thrift store a while back. He gets a star sticker on his reader chart each time he masters one. He currently has thee star stickers. Not bad. But he’s not reading then either. He can blend sounds to read thee letter words, but he doesn’t like to. Getting an autistic person to do something they don’t like and don’t see a purpose to is practically impossible. He’s memorized the three books and pays no attention to the words as he’s “reading.” I try to get him to point to each word as he reads so I can know he’s associating a written word to a spoken word. He refuses. Because it’s hard. He doesn’t really get that concept yet. And more to the point, that’s not how Mom and Dad read. This week I couldn’t even get him to read the books aloud. He just flipped through the pages silently because, he says to me, “that’s how you read.” And I certainly don’t point to each word in my book as I read. I’m still waiting on my little “Aha” moment when I realize the key to making him realize the importance of learning to read my way. Because, like many other autistic people, he won’t do it until my way somehow becomes his way.

It reminds me of a favorite movie line from “My Big Fat Greek Wedding” in which the mother wisely counsels her daughter that “the man may be the head of the family, but the woman is the neck.” Javan came pre-wired to be the head of his life, his thoughts, and his actions. I have to be his neck. I have to turn him, direct him, where he should go, where he should look. And I have to make it look good to him, because after all he its the feet as well.

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