zen garden image from nationalgeographic.com
I read a lot about autism these days, and one thing that tends to raise my hackles is when people talk about autistic children as broken, kidnapped, lost, or insert bemoaning term here. When Jenny McCarthy released her latest book, I pretty much ignored her, because I just can’t take her seriously. Then PETA decided to try an ad campaign exploiting autistic children. They had billboards with a bowl of soggy Cheerios making a frowny face that read: Got Autism? This was to imply that if you give your child milk, they’ll become miserable autistics. That was bad enough, but when I looked at PETA’s website, there were comments applauding the ad campaign from parents of autistic children and blaming the loss of their children on milk. That was the last straw for me. There has been more and more evidence to support the fact that autism is not caused by vaccines, mercury, or diets, but that it is predominantly genetic. So it seems to me that the conversation should be about what to do to help those individuals deal with and environment that poses constant challenges instead of remaining in this false loop of logic.
Raising autistic children can be, often is, hard. Raising any child can be, often is, hard. Regardless of what each child’s challenges are, it is a parent’s job to do all they can to prepare their child to function in the world. As a parent of an autistic child it is my job, to the best of my ability and to the highest capacity he has to learn, to prepare my son to function in this world-not the world I wish we lived in, but the one that actually exists. And notice, I don’t mention anything about making him “normal.” He’s perfectly normal-for him. (And honestly, some of what is called “normal” in our society is pretty despicable and scary, so let’s leave that word alone.) Yet, I do have to help him to be able to go out there and co-exist with others. Yes, it’s hard, but that doesn’t negate the need or my responsibility. I absolutely get tired of repeating things thousands of times. Of course it’s frustrating to feel like he might never “get” what I’m trying to instill, but I still have to try. And I don’t feel bitter or robbed or any other sort of loss that so often seems to be be the stigma of life with an autistic child.
“You get what you get, and you don’t get upset,” is an appropriate line from one of the dozens of kids’ programs that rule my television. That’s what you sign up for when you make the decision to be come a parent. There’s no menu selection tab for “easy child.” Okay, so my child is autistic…things will be different than I expected, probably a lot harder…move on and deal. It takes time to get there, but ultimately, for the sake of the child you love, you have to.
When Gus was little, he had a fascination with the bottom kitchen cabinets, where I always kept cleaning supplies. I tried a child gate to keep him out of the kitchen, but he was pretty wily and always managed to get around/through/over them. Clearly, he was not to be thwarted, and why should he? At some point, he’d have to be allowed in a kitchen, and he should be able to do so safely. So I moved anything remotely dangerous to a high shelf, and made the cabinet under the sink my place for Tupperware storage. Being allowed to play with the Tupperware was a safe compromise. I still had to redirect him from other cabinets, which he was not always happy with, but eventually he stuck to his area. Lots of repetitive, unpleasant redirection that paid off. He’s asked more than once to take cooking classes.
A more current issue is that Gus has always tended to run around after dinner (in the past it was all during dinner) and unwittingly, he touches anything in his path. The problem is that 90% of the time, his food has to be covered in ketchup or some sort of sauce. For a long time, the walls and curtains always looked a mess and I couldn’t see a way to get a handle on the situation. He’s learned to sit at the table most times, but as soon as he’s done, he goes for a couple of laps around the room. He should, and wants to, respect his home. Finally, we just make him stop in the bathroom to wash his hands before going on his circuit.
These are two pretty minor things we’ve had to deal with. There were bigger lessons that took years to teach Gus like not running into traffic, potty training, or writing his name. Tough challenges, but things he needed to learn. They took patience, creativity, consistency, and faith that he’d do it eventually. There were many days I wanted to just give up, but we just kept re-evaluating where he was at any given time, and working from there. We have to keep looking at our childrens’ strengths and adapt to them.
I’m not suggesting that I know what the future holds for us, or that there aren’t those parents whose children’s autism is so severe that their only choice is to make the hardest decision to honor where their child is by having that child live in a residential care facility. All I’m saying is that our attitude at any given moment, the way we view our autistic children, will have a direct impact on the way they view themselves, and that in turn will greatly effect their ability to navigate the world around them. If we look at them with love, acceptance, and faith we offer them a much greater service than viewing them as damaged or as burdens. By working with their strengths, we give them the confidence to know that they can interact with an environment that isn’t always so attractive. By accepting the reality of the present moment instead of lamenting what we wish it would/could/should be, or worse, looking for scapegoats, we ultimately make things a little better for everyone.
image by John Haslam/foxypar4 on Creative Commons 
