Questions, Answers, and Stories

The other day I spent an hour filling out yet another set of forms for Ezra. A few months ago, his class in school participated in a new program aimed at teaching social skills to children with autism spectrum disorders. A university study is evaluating the approach’s effectiveness, so they had asked parents to answer a lengthy series of questions before and after the children’s exposure to the program.

Nearly every parent raising a child with autism is familiar with these types of surveys, on which you are asked to assess how closely a series of statements matches you kid.

“My child gets nervous when talking to peers he/she doesn’t know very well.”

“My child likes to do things by him/herself.”

“My child worries about what others think of him/her.”

My wife and I have filled out forms like this countless times in the dozen years since Ezra first started showing signs of autism. Each time, I find the experience simultaneously frustrating and reassuring. It’s frustrating because, of course, these questions merely touch the surface of our son, his challenges, and the complexities of his mind. On the other hand, there is something comforting about finding questions that so directly address Ezra’s set of behaviors and habits.

“Has an unusually narrow range of interests.”

Yep, that’s Ezra. The question triggers a flood of memories of the succession of obsessions Ezra has embraced: dinosaurs, animals, Gumby, Star Wars, Pixar movies. (I dedicate an entire chapter of Following Ezra to this topic.)

I check the box for “Almost Always True,” but that hardly tells the story.

“Separates easily from caregivers.”

Well, it depends. Do you mean, now, or a couple of years ago? I guess you want me to answer for him right now. But can I tell you about the five hundred or so times I walked into Walgreens with him, pausing on the way for the same conversation?

“Ez, stay right by my side. I worry about you when I can’t find you in the store.”

“I will not run away, Abba,” he says. (Abba—Hebrew for ‘Dad’—is what he calls me.) “I will stay with you.”

Within 30 seconds, I turn around and he’s gone, nowhere to be seen. Luckily he usually operates in predictable patterns. Almost every time, I find him in the toy aisle, or occasionally the magazine rack.

And then there was the time at the San Diego Zoo when we arrived before the gates opened and little Ezra, so excited to see the elephants and chimps, slipped away from our family, into a crowd of thousands.

But I digress.

“Walks between two people who are talking.”

How does the person who wrote this questionnaire know my child so well? I smile, thinking of all the hundreds of times Ezra, in his enthusiasm to say something or ask a question, has innocently placed his body so that it blocks me from the person with whom I’m conversing.  It’s part of what makes Ezra Ezra.

I check “Often True” and keep moving down the list.

“Is aware of what others are thinking or feeling.

“Has overly serious facial expressions.”

“Has a sense of humor, understands jokes.”

I do my best to give the answers the evaluators need, thinking about my son and how he has changed over time. These answers may hint at a sense of my son, but they hardly give the whole picture.  Next to nearly every question, what I really want to do is write the same thing:  “Want to hear a story?”

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