Imagine that every day when you drive away from your home to run errands or to go to work, you must cross a train track. Imagine that every single time you come to that train track, there is a train on it, traveling ever so slowly. You must wait on that train to pass before you can cross the track and continue on your way. Then when you drive home later, the same thing happens. Any time you try to cross that train track, no matter the time of day or how many times you have to drive over that track in a day, the same thing happens. Over and over again, you must stop and wait on that train to slowly pass. You begin to dread it and you find yourself very irritated about this slow moving train. Some days you handle it better than others, but eventually on a bad day, you find yourself saying, “I hate that train!!”
This is how I sometimes feel about autism. Not Aaron, mind you…..but autism itself. I love Aaron so much. I love how unique he is…..how he views the world while opening up his view to me……all the many, many lessons he has taught me over the years as I have lived with him….all the times that he has made me laugh at the funny things he says.
But some days it’s like running into that slow train every day. On those days, if I’m tired or troubled, it can be especially difficult to remain upbeat or to see the fun in Aaron’s way of living in his world. That’s because his way of living in his world usually involves me to some degree, and often that involvement causes me to stop what I’m doing and do what he wants…..or demands. Just like that slow train that impedes my day, at times Aaron’s rigid routine makes me stop what I am doing while I meet his needs.
For instance, his bedtime routine at night. At night, when I am more tired. He absolutely does not want to go to his room to get things situated unless I go with him. He wants me to help get his blanket on the bed just right, close his blinds, set his clothes out for the next day, and say goodnight in his room near his door…..not out in the hall or on the right side of his bed, but in his room near his door on the left side of the bed.
If I am on the computer he will come to stand behind me and he will hover. He is waiting for me to come up to his room for the bedtime ritual. If I tell him to go on and brush his teeth and take his pills, he will do that and then return to stand behind me and hover some more. I just know that he will not go to bed unless I stop what I am doing and go with him. There’s that slow train, every day the same.
Or getting his coffee in the mornings. When Aaron comes down to the kitchen, he wants his coffee. I don’t mind that at all, unless he’s demanding. But he will linger as he waits for the coffee to finish perking, if I’m making fresh, and he will linger as he waits for me to pour the coffee. And he really wants me to carry it upstairs right away. The other morning he was hovering, wanting me to pour his coffee. I poured his cups of coffee and went back to what I was doing. I always carry his coffee up to his room because he is so shaky that he spills it. So he stood there, hovering, waiting for me to carry his coffee upstairs.
“Are you carrying my coffee to my room?” he asked. I told him that I would get it in a minute. He walked in the living room, but soon was back in the kitchen…..hovering again.
“Are you getting my coffee?” he asked again. So I told him to go on upstairs and take his shower, and I would bring his coffee up while he showered. This didn’t suit him at all.
“Mom!” he said with impatience. “Aren’t you getting my coffee?” He started walking away, but I knew we weren’t done….and I knew I would need to carry his coffee upstairs now.
This made me very irritated on this particular morning. I rinsed my soapy hands off under the running water at the sink. And thinking he couldn’t hear me, I muttered, “I hate autism!”
But Aaron did hear me. He heard my careless remark, and he did not like it…..not one bit. Since that morning I have had to do some damage control. I’ve explained to Aaron several times what I meant when I said those words, assuring him that I did not mean that I hate him. I reminded him that Granddaddy died of cancer, and that I hate cancer. I told him that Grandmother has Alzheimer’s and that I hate Alzheimer’s. I’ve explained that I hate his seizures.
Explaining to him why I sometimes hate his autism has been a little trickier. I’ve talked to Aaron about how sometimes life for him is very stressful because of his autism and how it makes some situations difficult for him to handle. Aaron really doesn’t want to go into great detail about those things, though. And I don’t either, because I don’t want him to feel that I think his life is bad or hard. I wish I could take back that moment, and that I hadn’t said those words in my frustration. Yet on the other hand, at least it’s opened up some conversation between us and enabled me to talk openly to him in a way I don’t normally do.
Aaron and I were watching a movie on Saturday night, one that he had looked forward to watching with me. Suddenly he turned to me and said that he was having a dream, and then went into a big seizure. Gary and I stayed with him, and when he was able we went upstairs to his room so he could go to bed. The movie would wait until another night. I got his bed covers all ready while he brushed his teeth. His head was hurting from the seizure, and he was slow and weak.
Despite how he felt, though, he went about his bedtime routine as he normally does. I watched him carefully place his stuffed snake and skunk in the bed, under the covers, just right…..and then pull the covers up just to a certain point. I watched him open his notebook and record the time he was going to bed, so meticulously. I watched him make sure that his back scratcher and other items were on his desk where they belong….that his clock light was dimmed…..that his glasses were just where he always leaves them beside his watch that he was sure to remove from his arm.
His routines are his life. Even when he feels terrible after a big seizure, he still maintains his definition of normalcy and routine. I do admire him for that. He’s so determined despite how his body works against him. So strong even though he’s weak at times like this.
Yes, I do hate autism and how it has altered Aaron’s life in huge ways. It has also altered my life in huge ways. But I do need to be careful not to let my anger at autism be a cause for hurting Aaron’s heart. I think he understands my statement from the other morning. I still wish I hadn’t said it. Lesson learned, I hope.
That train will be on that track every single day. I can’t change its path or its inconvenience in my life. But I can change my attitude, and when I feel like muttering useless words I need to pray instead……count to 10 or to 100……go sit in the flower bed with Aaron for some mulch therapy……clap a few times like Aaron does to relieve my tension…..whistle or whoop out loud with Aaron…..
Poor Gary. I don’t know if he could handle two of us in the house.