“The arm, too,” he insisted. “All four fingers. And the thumb. The other side too.”
Careful to get all of his digits and his forearm covered in glue first, I then reminded him to let it dry, something he rarely has patience for. The purpose of this endeavor? To prevent him from picking all of the skin off of his fingers. Lately, he has even created sores on his arms and his legs from all of the picking. Ever since his current teacher rediscovered the glue, he only wants glue. His world revolves around glue. Glue: don’t leave home without it. Like so many things, once he starts on something, he has to have it all of the time. I guess that’s part of the autism.
So, yes, as I sat in a meeting with a couple of parents about their child and they had two of their other children there, I painfully and meticulously put glue on my child’s hands. I had to seek out glue for this purpose because it became immediately clear that without it, we had a problem. The feet started stomping, and I knew his body would be on the ground next. Better to have a little girl ask why I’m putting glue on his hands than have her ask why he’s hurting himself. Besides, I thought everyone liked that glue trick. I used to.
Compared to other innocent questions and strange looks I get, this one rates a three out of ten, maybe. Probably more like a two or less. When Squeaker walked into school one day wearing his headphones, I little girl turned to her mother and asked, “Why does he have to wear headphones?” I ignored the question. She wasn’t talking to me anyway, and it was a little girl asking an innocent question. Besides, what do I say? “Well, he has autism, and he has a noise sensitivity, so he wears his headphones…” Again, my son seems oblivious to the questions. If he hears them, he appears un-phased by them. I feel it, though. How could we make him more comfortable in his world more inconspicuously? I don’t know. More than anything, I want them all to see him as one of them. Yes, he’s special and I want him to stand out–because of all of the wonderful things about him. His sense of humor. His kindness. His infectious laughter. His ability to remember everything. His random generosity. His good manners. His desire to help.
Too often, he stands out for the things people don’t understand about him. People just watch, mostly. I have a hard time with it, because I don’t know how much people do or don’t accept him. In karate today, I felt certain he would have a hard day. He had a yellow day at school, he had already had a couple of good tantrums in the car, and he was laughing maniacally before class started. However, this was part of our routine. Tuesdays are karate days, and I have to give him a chance to participate. Unfortunately, that just didn’t happen for him. He rolled on the floor. He took off his belt. He swung his belt around in the air. He laughed. He yelled out, “booyakasha!” He refused to follow directions.
When he got told to sit out, he sat down, and then got back up. He wouldn’t stay put. My mind wrestled with how to handle the situation. I had been here before. I had gotten up, grabbed my stuff, and tried to get his shoes on him to carry him out before. Sadly, I do not have the physical strength do carry that out skillfully. It wound up being more disruptive, escalating his behavior, and we didn’t even leave. So we just stay.
My friend, who teaches the karate class, told me it was okay, and signaled for me to stay. I choose not to speak to him in these moments. I doubt any of the other parents understand that. Words do not help. I look. I point. I shake my head. I do not speak to him. If I can help it, I try not to even make eye contact. He knows the expected behavior, and, in class, his instructor tells him what to do. I do not interfere. If I speak to him, he knows he has drawn me in. He gets my attention when he does well. Thumbs up. A smile. Handle signals. Speaking gets him off track, though. At the end of class, he can have my attention again. I wish I could say it’s been easy, but the past couple of months it seems like he’s sat out and lost credit for twice as many classes as he’s gotten credit for because of lack of participation. It feels like he’s going to have that orange belt forever. But I keep taking him because it’s important to stick to things and he needs the social interaction and the discipline.
So those who don’t understand the glue, the headphones, and the off days, I have to say, it’s just par for the course. I don’t think he would’ve done any better today. He woke up in a mood-swingy state this morning. One second he was laughing his head off and the next thing we knew, he had his head banging into a wall. It made no sense. Happy-sad-mad. Quick as a flash. And when he wakes up that way, it spells doom. It does very little good to tell him to “be good” on days like this. He bites me. He intentionally coughs in my face. He kicks and hits me. As much as he hurts me, he hurts himself. Today, he scratched his face several times, leaving long red streaks, just because he was frustrated. I can tell him to stop, I can put him in a hold until he calms down, but at the end of the day, the only thing that will end this whole cycle is the end of the day. And thank God for that. Thank God that tomorrow is a new day. We have hope that tomorrow, he will wake up, his mood will have improved, and we’ll see the Squeaker that hugs and kisses instead of biting and spitting.
And no one can understand that unless they live it. That we can only hope that once our child goes to sleep, he will wake up be our child again. Because it’s like sometimes he wakes up and it feels like something has taken over his body and we wonder where he went. He’s in there somewhere, because we see glimpses of him throughout the day. But, he’ll go to sleep at some point, and he’ll wake up, and, most days, a different child, our child, will emerge the next morning.