Tuesday, March 27, 2012

The Most Spectacular Thing of All

Susan Senator

In 1993 when Nat was first diagnosed with Pervasive Developmental Disorder, (PDD) under the “Autism Umbrella,” I asked the doctor what do you do about that, what is the treatment?

“Education,” he replied. He went on to tell me that no one really knew which approach was best, and that there were many schools of thought. “It is up to you to observe and figure out what works for Nat. When something is right for him, you’ll know,” he continued enigmatically.

But I envisioned Nat at school -- though back then I could barely picture that, he seemed so little and vulnerable -- and this advice seemed wrong.  He needed me, not school, I remember feeling. He would be bewildered by school. Lost. But the doctor was saying that he should actually be in school for as many hours as possible. (No one said “at least 30-40 hours a week of intensive one-on-one education. If he had, I would have resisted it.) I did not believe school would work for Nat.

As pre-historic and simplistic as his diagnosis and advice were, the doctor, bless him, was completely right. School, education, a teaching environment has made the greatest difference in Nat’s life. Even when he was in programs that were not the best, he progressed, he did what he could. And when he participated in programs that were right for him, he took off. (Please do not read this as a paean to ABA, just because that was Nat’s best school program. I am not convinced it was the ABA per se that did anything for Nat; more likely it was the one-on-one attention and repetition, and very kind teachers, that did the job for him.) And no, he did not take a rocket ship to Normal. He did not de-Auticize (my favorite term, coined by artist, autism mom, and dear friend NancyBea Miller). Nat maintains his diagnosis -- or one of them, they’ve changed a lot over time, but Nat remains basically pretty deeply involved with autism, PDIA (my own jargon, feel free to use it and make up your own, more accurate versions).

Nat’s education helped him in so many ways. He learned the importance of paying attention to others, of trying to communicate. He learned all the basics: letters, numbers, shapes, reading, writing, typing ... And then when he was 14 we had a conversation with the school that made my heart hurt: they asked us to start shifting him out of academics and into “pragmatics.”

This hurt, but it was hands down the best decision we ever made for Nat so far. Why did it hurt? It hurt my own vanity, to realize once again that this child of mine was not [you fill it in]. He was not going to learn history, chemistry, algebra, or read books at his grade level. He was going the vocational track. He was going to have to focus on what I thought of as the Dull Kind of Adult Life. He was going to have to learn ugly things like food preparation, laundry, house cleaning, street safety, community behavior & appropriateness. No Latin for Nat. Essentially, nothing I could brag about to anyone. Learning Activities of Daily Living, ADLs, and training in basic job skills like serving meals or making boxes -- who in my world did that? Who in my family of doctors, lawyers, educators? My Harvard Medical School Dean neighbor?

I emphasize this ugly shame I felt to illustrate that it was all about my own vanity. That and the death of certain hopes that I had/have for my children, and why not? I belong to a social class that believes in the American Dream, of working your ass off and educating yourself to reach the pinnacles of what the world has to offer.  In my world, it is not just a given that you do college, you also have to go to graduate school. You choose a career that hopefully helps the world in some way. You live in an area where they have the best public schools (you never do private because you believe that social programs and public sector investment are what make the US great), you have children and you pass on the same values to them.

So what happens if your child does not fit that mold? Well, in my case, once I got over the fact that there was only one way to view success — which began with an Ivy League education — my world broke wide open and beautiful things spilled out, like a treasure chest. I laid my eyes on the most spectacular thing of all: Nat was really learning and using what he was taught. Nat could generalize those new skills, too. He learned how to do laundry there, and so he could do it here (with assistance). He was used to cleaning, shopping, making lists, keeping himself safe and healthy, because that is what he learned in school. His mind was not wasted; it was ignited. Suddenly everything made sense to him; everything had real-world application, and for a guy who craves context, that was just perfect for him.

Thus Nat -- still PDIA -- made the leap to living outside of our home, and to working out in the world with hardly a ripple. Do you realize how marvelous that is, a guy with as many challenges as Nat has -- (yes, he has often been officially termed “low functioning,” and “severe.” Even by me, sigh.)?  It is nothing short of the American Dream.

If you open your mind, your definition of education to fit the full spectrum of human beings, then ADLs and job training are truly valid forms of schooling. I believe that all children would benefit from this shift in perspective and approach. Sure, the classics matter. Of course most academics still do matter. But, in addition to that, we must train our children to live in the world. All children, whether diagnosed or not, should be trained in social competence, independent living, and vocations. Education is and always was the way out of darkness.


This post was previously published on Susan's Blog as "Education Is the Answer."