Susan Senator

For years I have been certain that when parenting an autistic child — or any for that matter — one should not give up hope. It’s too bad that the word “hope” can sometimes conjure up images of sugary, mawkish sentiment, bright-eyed kittens or teddy bears holding balloons. Because the truth is, hope works. Hope is a really good thing and should not become sentimentalized, turned into a four-letter-word.

Today I read a friend’s blogpost about her little boy, and his IEP meeting. The nadir of the meeting was when she was told of her son’s IQ testing and what it led to. You can probably guess. Without going further into that, and how I could relate to the sense of injustice elicited by our children’s low IQ scores, I want to write about where this wonderful mom “K” went with this. The jumping-off point was the IQ/MR thing, but the important thing to me was what K forgot when she jumped.

The whole testing thing made her think about abilities, “normal,” and otherwise. K thought back to some commercial, where a young boy comes home to an empty house and because he’s hungry, he goes and makes himself some mac and cheese. He reads the directions on the box, executes them correctly, serves and then successfully feeds himself. K writes — correctly — about how this mundane set of tasks is actually a miracle. She says

“Do you know how amazing a feat all of that is, for a child to take the initiative to seek out something to eat, read the instructions and follow them, seek out and find the proper utensils for preparation of said food, use the microwave safely and correctly, and then eat the food without burning themselves or dropping the food? To just be able to use a fork? That commercial is a goddamned miracle. M just barely learned how to use a fork about 2 months ago. Just the motion of stabbing the food with the tines and ensuring you don’t overload the fork is actually a very complex task that most people take for granted. M being able to carry out all the steps depicted in that commercial seems like something straight out of a science fiction novel to me.”

K is absolutely correct here. Both the boy in the commercial and her own son have done miraculous things. K knows this.

I remember feeling this way, too. Sometimes I still do. I, too, have watched commercials, birthday parties, sporting events, loving interactions between mother and child, and I, too have come away thinking about how Nat is so different and so unable, and yet I could also understand how amazing Nat’s accomplishments were.

The thing is, there were also times like this, six years ago, where I had no hope that Nat would ever be able to master the next level or the next. It seemed like so many levels to rise to. It seemed like childhood — that precious time in life where many inabilities are forgiven — was too short a time for what he needed to learn.

Yesterday Nat came home and simply — and miraculously — asked me, unprompted, for a snack. Today Nat came into the kitchen and simply — and miraculously — made his own bagel. Yes, they were pre-sliced. Yes, I had briefly gone over his choices. But, at 20, he now can — pretty much — take care of his own physical needs. He did learn how to cook simple meals for himself. Just as, years ago, at last, he did learn how to use a toilet. He learned, over time. He developed, over time. No magic, just good ole education and perseverance. You decide how to pronounce the latter.

Nat’s body and brain grew and developed. There has been no capping-off point, no closing-of-the-window. 0-3 means nothing when you are atypically wired. Just as we don’t have to take to heart what the DSM 1-5 says about us or our kids, we don’t have to take to heart the whole snapping of the elastic mind warnings. They are just guidelines. But the results have infinite variations.

I always thought I had so little time. Now I realize that Nat had time to develop, but that now I have so little time to appreciate my boys as children, for who they are. I squandered so much time worrying about what they were not.