Without Consequences

Yesterday Joy had to take a keyboard to the school.

Dylan doesn't like much, so when he likes something, we get it for him. Or when we think he likes something. Or when we hope he would like something. Mostly it's the latter one. But we're pretty sure he likes keyboards.

A long time ago, Dylan showed an interest in a small electronic keyboard at school. So we got him one at home. And hoped. By then, we didn't really say what we were hoping for, but it was there anyway, or at least, it was there in me. I'm not sure about Joy because, like I said, we don't talk about it, and haven't since the day of the puppies.

A longer time ago, we had heard about therapy animals and the effect they have on children with special needs. There was a pet store on the other side of town where they kept the puppies in an enclosure in the middle of the store and you could pet them and play with them. We took the boys there to pet the puppies. We were not going to buy a dog, probably. We just wanted the boys to play with them for a bit.

They did play with them, a little. They petted some of the puppies and let them lick their hands and then lost interest and that was it. We were both mildly disappointed, which is the most disappointed you should let yourself be when you don't win the lottery. On the way out of the pet store, I confessed to Joy that I had hoped that maybe the puppies would have been a breakthrough for Dylan. That he would start talking, and noticing the world around him, and being part of our world in a fuller sense.

That's the thing with autism: you can't help but hope that there will be a miracle breakthrough, that one day there will be something that changes everything, and Dylan will stop hitting himself and start talking.

Sometimes I ask myself, if I had the ability to actually take away his autism, just like give him a pill or something and he would have no special needs anymore, would I?

It seems simple to say oh yes of course I would but then you have to think about it. Mostly, Dylan is happy, or at least not unhappy. Or so we think, because we can't really tell most of the time, but when he's not crying or moaning or hitting himself or being enraged or throwing himself back and forth and instead is sitting quietly watching the same few seconds of "Despicable Me" over and over again, we assume that he is at least content with his life.

So if you magically transformed him from someone without autism into someone who is more neurologically standard, would you be doing him a favor? Dylan will never have to have a job. He doesn't have to worry about grades. He doesn't face peer pressure; you can't pressure someone who is indifferent to you and your entire world. He doesn't have to help (much) with chores. He won't have a mortgage, student loans, a car that needs a new transmission, a divorce. He won't have any of those problems. True, he has his own problems, and they are mostly unfathomable to us, but he also has an entire team of people who will leap in to help him try to fix any problems he might have.

Like when he is at school and his keyboard at school breaks. He has a keyboard at school that they let him play as a reward for doing the things he is "supposed" to be doing at school, which is mostly learning life skills like folding laundry and sweeping.

When he plays his keyboard, he doesn't play songs. I tried a while back to start teaching him how to play piano for real, trying to teach him the notes and how to play a scale, to see if he would like it, but he didn't like it and I had to stop because trying to make him do something my way might kill off the thing entirely for him. When he was 3 1/2, his in-home therapy workers tried to teach him to ask for milk by taking a small picture of a milk carton off the poster it was velcroed to and handing it to someone. Anytime he wanted a cup of milk they steered him to the wants-and-needs poster and had him take off the picture and hand it to them. In response, Dylan stopped drinking milk and has not drunk milk since then. He is 14.

I didn't push the piano teaching, even though a part of me still thinks they keyboard *might* be the breakthrough, that he will start playing and then miraculously start talking to me and telling me what's really wrong with him when he first stares into space for a minute and then goes into overdrive and starts flinging himself around and hitting his head and screaming. Instead, he still plays the keyboard the way he wants, a mixture of notes that sounds like it could be a song but it's discordant and arhythmic. But he likes it. He will play for sometimes as much as thirty minutes, and much of the time he does that while wearing a blanket around his shoulders and bouncing on an oversized exercise ball that sits in his place at the table instead of a chair. He ends up sweaty and disheveled and quiet.

When his keyboard broke at school yesterday, they took the keyboard to the tech ed teacher, who agreed to try to fix it. While they were waiting for that, they called Joy, who took our home keyboard to the school right away, then came home and ordered a second keyboard for our house in case the school one was unfixable. We have probably bought in excess of fifty keyboards for Dylan, an average of nearly four a year for his lifetime. He's hard on them. He takes the keys out, and he plays rough with them. He tries to bring them in the car sometimes for our nightly rides, or he did before we found a supposedly indestructible keyboard that rolls up and is flexible and can be easily transported but is not so easy to play when you are in the car because it requires a wide, flat, solid surface to play it on. Draping it over your thighs does not work. Also, the keyboard is not indestructible. The special ed teacher who recommended it to us told us it was indestructible because the school had had one for years and it was never broken. We have bought five of them. Dylan is very strong and very determined and does not seem to understand that doing some of the things he does breaks his keyboard, and would leave him without a keyboard, at least until we could get a new one, if we did not always have a spare for him, so that if he breaks one we can pull out the spare immediately.

It is a life without consequences, at least the way we would understand them.