Autism Vox

I Had to Learn to See Who He Is: An autism mother’s continuing education

by Kristina Chew, PhD on April 29th, 2007

“You can get an education at ringside, but you also bring your own education to ringside.” —- Carlo Rotella, Cut Time: An Education at the Fights

It is Sunday morning, 7.15am according to my cell phone: I can sleep a little more, I think, and close my eyes. I open them almost two hours later to a familiar sound: My son Charlie is talking. One word he repeats over and over, a smile in his voice: It is the name of one his favorite aides. And then, two more words: “School tomorrow!” He runs in and pulls off his pajamas and makes a request: “Clothes on! Socks, shoes.”

I am more than half asleep; Charlie says these words everyday. And yet I am in a state of awe and warm wonder to hear his voice and his voice uttering words. They are mostly nouns; they are not in full sentences; his pronunciation is not crystal-clear perfect. The sound of Charlie’s voice will always be the best music I will ever hear: Once upon a time, Charlie did not talk. Charlie, it seemed, could not talk, and him just saying a sound—duh—brought a strained, if minimal, relief to my husband Jim and me. If he can make sounds, maybe more will come and those will become words and maybe, someday, talking.

Charlie learned to talk one sound—not even a syllable—at a time. Not only did he not talk when he was younger, but when he did start to say words (he was four going on five), these were only comprehensible to Charlie’s therapists, to Jim and to me, and I was the one who understood the most. And, initially, attempts to model words for Charlie to say were unsuccessful because Charlie did not seem to understand that he was supposed to imitate us speaking to him. One of the first things he learned to do in his home ABA program back in September 2006 in St. Paul, Minnesota, was to imitate: We dropped blocks into buckets, clapped our hands, waved, and cheered to the rooftops and swung him around and hugged him when he did as we had done; when we stood up and said “do this” and Charlie stood up too.

These days, Charlie has started imitating on his own—he made his own lunch the other day, without a single request or directive from me. He also recently assigned himself the job of taking out the kitchen garbage and knows to put a new plastic bag into the plastic bin—and knows that the plastic bags are in a certain cabinet—because he has been watching me. When Charlie was younger, it was a home program based on Applied Behavior Analysis (ABA) that taught him to learn how to learn; as he approaches his tenth birthday in the middle of May, I think he may be on his way to starting to teach himself. And, to learn things simply by observing what goes on in the world around him and what other people do. It is a small thing, so the majority of Charlie’s “gains” and “progress” tend to be. Charlie is a student for whom the notion of “don’t compare him to others” more than applies for, measured against himself, Charlie’s accomplishments—-learning to talk, to ride bikes for ten-plus miles, to swim and boogie board in the ocean, to pack that lunch, to bring himself back from the verge of a big “meltdown” and play the piano—are not merely something I am happy to boast about.

To achieve what he has been able to—what my boy, diagnosed with autism of some “severe” or “classic” degree, with apraxia, has been able to—has required a huge effort, somewhat on our part, but most of all on his. I would wager, Charlie has tried as hard to take hold of his racing thoughts, tackle cognitive dissonance, and remember how to match the sounds his mouth produces to the thoughts in his mind, as have untold legions of high school students in their efforts to get into top colleges—into the Ivy League, the Harvards, Yales, and Princetons of the academic world.

I know; I spent my high school years doing everything I possibly could to get into one of those colleges. I was successful. When Charlie was born back in 1997, I mused, as many a parent muses, about what he would be (translation: what high-powered or at least prestigious job will he one day hold?) and whether he would attend my alma mater. And while I grant there is a big difference between one’s child getting into an Ivy League college and one’s child learning to read some and to have the skills necessary to get a job and live in a group home, there is a common lesson to be taken away here. How does a parent come to figure out what is his or her preconception of what they wish a child to be, and what and who that child truly is?

This is how Michael Winerip, a Harvard alum from the 1970s, puts it in Young, Gifted, and Not Getting Into Harvard in the April 29th New York Times:

When my four were little, I used to hope a couple might go to Harvard. I pushed them, but by the end of middle school it was clear my twins, at least, were not made that way. They rebelled, and I had to learn to see who they were.

I came to understand that my own focus on Harvard was a matter of not sophistication but narrowness. I grew up in an unworldly blue-collar environment. Getting perfect grades and attending an elite college was one of the few ways up I could see.

“They rebelled, and I had to learn to see who they were”: I read this sentence and think of my son Charlie’s tough times from when he 6 - 9 years old. I remember the uncertainty and chaos of my thoughts and hopes when Charlie was 6 years old and not only not going to kindergarten, but not being anywhere near anything like “partial mainstreaming.” Charlie had been in a preschool special ed classroom at 4 and 3 months; three months later, he was in a self-contained autism classroom with a 1:1 ratio of students to teachers/aides and in such a setting he has stayed. And while I could not say it then, I say it now: I was disappointed. Did we do enough?, I kept asking myself. We had done ABA and again I was ordering books about RDI and sensory needs and how to get a good IEP. We had done some biomedical treatments for Charlie when he was 2 years old and until he was just turning 5; I made appointments with a DAN practitioner (a nutritionist) and again was collecting samples to send out to labs and putting liquid megavitamins (the nutritionist’s assistant referred to it as “goo” that some man “brewed up” in batches) into an oral syringe, as Charlie would otherwise not drink the stuff. (I would not have either, and regret I had him take it.) I met monthly with the nutritionist; the one time I brought Charlie, the taut way she held her shoulders suggested her displeasure, as if his being in her office was really not necessary. (Remember, we were talking about biomedical treatments for him, not for me.)

“They rebelled, and I had to learn to see who they were”: Winerip’s sentence reverberates in my thoughts. I thought I saw small sparks of something different in Charlie from the vitamin-goo and the cod liver oil and other supplements I gave Charlie, but nothing lasting, and Charlie’s difficulties at school continued, and worsened. This was where things were when we decided it was time to stop seeing the DAN! nutritionist: At our last meeting, I remember her sitting across the coffee table in her mauve-painted office and, following a discussion about the particulars of chelation (it was not the first time we had spoken about it), she said to me words to the effect of “I’m so glad you are joining us on this path.”

Path?

Shortly after, I emailed an old friend—Charlie’s first speech therapist, who taught him how to communicate and then to talk back when we lived in the Midwest—and soon she was flying out to New Jersey and setting up a home program for Charlie and training therapists. After a few months—with Charlie’s communication and speech improving, but his behavior difficulties increasing to the point that the principal of the summer school program insisted I take Charlie out of his classroom now—we contacted the Lovaas agency and, in the months that followed, began Charlie in a home ABA program again. Even more, we gradually winnowed ourselves away from biomedical treatments and advocacy for Charlie’s education came to the forefront. I’ve chronicled Charlie’s educational odyssey of the past few years as the story of Autismland; in that story is mention of nearly every horrible or “kaka” moment that one might experience in raising an autistic child: Thanks to all the good teaching he now gets at school and at home, Charlie is a happy boy who already put his lunchbox in his backpack this Sunday morning, in preparation for hopping onto the yellow schoolbus on Monday morning.

A concentrated, and even (to borrow a phrase from Michael Winerip) “narrow” focus on one goal for one’s child—be it Harvard or “recovery”—can get in the way of seeing how many “avenues of success” there truly are. Writes Winerip:

My four have been raised in an upper-middle-class world. They look around and see lots of avenues to success. My wife’s two brothers struggled as students at mainstream colleges and both have made wonderful full lives, one as a salesman, the other as a builder. Each found his own best path. Each knows excellence.

That day, running on the beach, I was lost in my thoughts when a voice startled me. “Pops, hey, Pops!” It was Sammy, one of my twins, who’s probably heading for a good state school. He was in his wetsuit, surfing alone in the 30-degree weather, the only other person on the beach. “What a day!” he yelled, and his joy filled my heart.

“School tomorrow!” is what Charlie yelled this morning, and his joy fills my heart. I imagine that he has been saying it all day: Charlie has spent this Sunday afternoon in New York City with my parents, who are visiting from California. Jim is on a trip out of town to finish research on his book on the New Jersey/New York waterfront and the Irish mob—a project he began when Charlie was a baby and has had constantly to set aside in the past few years—and I am sitting in the library, in the library I used to consider a second home when I was in college and where, ancient Greek and Latin dictionaries with me always, I read and read: Virgil. Cicero. Homer Euripides. Catullus. Sappho. Sophocles. Ovid. Plato. I am beyond fortunate to be able to sit here in the knowledge that Charlie is doing well. I am able to do this because of all that Charlie is learning.

I wrote this back in September of 2003, in an issue of Princeton Alumni Weekly. This was before Charlie had some of his biggest struggles such that we had to take him out of school and hire a lawyer, but it rings just as true.

As the parent of a child with special needs, my hopes for my son’s future have been rewritten. Charlie will require special education services through his school years. College, driving a car, marriage, grandchildren – these are all uncertainties. In the lives of children like Charlie and Felice [the son of a friend who graduated in the same class as me], graduation from high school, having friends, and saying “I’m thirsty” are cause for joyous celebration.

What is achievement? What makes a child “perfect”?

Charlie is learning to say more and more every day.

In the words of Charlie (who is young, gifted, and not getting out of special ed but going plenty of places): School tomorrow.

“A whale-ship was my Yale College and my Harvard” says Ishmael in Herman Melville’s Moby Dick; I quote a friend in saying that “Yale and Harvard and other schools like them have, in fact, been my Yale College and my Harvard.” Yet my education at Charlie’s side these past few years has been an unparalleled post-doc experience.

And I am not done yet.

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POSTED IN: Charlisms, Classics, College, Education, Family, Language, Parenting, Schoolbus