J is for a Jenny Story: What is the Most Important Thing You’ve Ever Done?

Yowza! Y’all sure did get your cool discussion on for yesterday’s Introvert vs. Extrovert post. I’m continuing the deep thoughts for today’s Thoughty Thursday blog.

Hubby and I got into a discussion this week about the most important thing we’ve ever done in terms of the greater good (aka: the world beyond our immediate lives).

Let’s face it, most of the time, the only people who really care about what we’re up to on a day-to-day basis are our friends and family.

That doesn’t mean I don’t think our personal choices are important. I do.

Our actions can ripple far beyond us. But most people don’t get to see how their actions change the world. One of the biggest motivators for many writers is that seductive idea of making a ripple on the world with their stories.

Note for my non-writing pals: Writers think “story” is more exciting than anything.

But as hubby and I talked, I realized I could think of something I was privileged to do and see the results from.

I used to teach autistic kids in a 40 county area in mid-Missouri. It was a really fun and rewarding job.

The goal of the Autism Project was to help all the autistic individuals in rural areas because they used to fall through the cracks A LOT.

I don’t know how many of you come from small towns but I’d never really spent much time in them before this particular job.

An example of the cultural difference between Los Angeles (where I grew up) and Cairo, MO where the oldest kid in my caseload lived:

In 1991, Cairo had a population of 243, all Caucasian, ALL living in rural areas, most of them on working farms.  There was a feed store, a storefront city hall and post office, four churches, ONE school (K-12), NO gas station, and a cafe.

But even though you could blink and miss it, I was happy to go to Cairo anytime.  Cairo had David, and he was a fascinating puzzle I longed to solve.

David was a compliant, funny, personable twenty year-old and he tried so hard.  He was non-verbal, except for some syllables, but David communicated and understood me extremely well.

He would nod his head yes, or shake his head no, in answer to questions.  He would point correctly to any object he had previously seen.  He could identify pictures of any of his family and he would always give the picture of his mother an extra pat.

However, David didn’t seem to be able to learn anything new.

I would ask him a question about something that he had no experience with, always with a picture to be pointed to. He would know that he did not know the answer, and just hover his finger over all the pictures before putting his hands back on the table and staring at them.

Everyone in my office was positive that David was bright and I was so excited that he was assigned to me.  But his story was heartbreaking.

This beautiful boy had been in an institution for the mentally retarded since he was eight years-old.  The family doctor told David’s mother that it was the best thing for him and she complied. In the 1970’s very little was known about autism. Remember, this was the age of Bettleheim and his “refrigerator mothers” theory.

Only David wasn’t retarded. He was simply non-verbal and therefore hard to test and evaluate. After 12 years in that institution, one of our caseworkers found him, evaluated him and determined that he’d been misdiagnosed.

No one at that facility taught him much of anything because they didn’t think he was able to learn.  Instead they had him sorting boxes of nuts and bolts and screws.

This kid was dying to learn.  It was in every line of his body when we worked together.

After three months, David showed major improvement with things like eye contact and social skills. More importantly, he began to trust me.  I introduced facilitated communication, a process where non-verbal individuals communicate via a keyboard with the help of their therapist, and we began working on that.

One day we were having a session and David was extremely excited.  He wasn’t usually so animated and his mom clued me in when she walked through the room:

“He always wants to watch Michael Jordan whenever he’s on TV…he just loves him.”

I smiled at David and asked him if he liked Michael. He immediately typed out YS.

Now this was the first time that David had ever typed a word that was close to English, and I got pretty excited.  “David, are you saying ‘Yes’ you really like Michael Jordan?”  He nodded his head and typed YS again.

I asked David if I could borrow the device and he nodded.  I typed in YES and turned it around.  “David, here is how you spell ‘yes.'”

He looked down for a minute and then he pulled the keyboard over, tapped out “IDGNOMIABCS” and pushed the machine back to me. 

I sounded these eleven letters out for a minute, sounding out things like “I dig no…” or “I ding…” David shook his head “NO” and pushed the machine an inch closer to me.

I tried to sound it out again, skipping around to the things I could understand – “’I’..’NO’..’ABC’” – and David began nodding and getting more agitated.

All of a sudden, I got it. “I don’t know my ABCs…David, is that what you’re saying?”

He nodded his head as hard as he could. I still get goose bumps thinking about it.

I told him I needed him to answer me on the machine so I really knew that we were talking about the same thing.  And he typed “YES.”

“Would you like to learn?”

He nodded again and, for the first time ever, reached out and touched me.  He pulled on my sleeve and flicked his eyes to make contact with me, really briefly. Then he nodded  and sat back in his chair with a tiny smile.

I lucked out that summer day to be the one who asked David the right question, in the way that he needed it. Yes, David learned to spell and, eventually, to speak, though he was always a bit garbled. He learned to write and to sign, and used one to supplement the other.

In his first official “interview” with the Project, one of the interviewers asked him what he wanted to do for a living, and he said he wanted to produce movies.

She asked him what he wanted other people to know about him.  His answer: “I want them to know that I’m not dull.”

The interviewer was so surprised by his answer, she questioned him about the word “dull.”

David smiled and flicked a quick glance up at her before typing, “I am not saying dumb.  They know now that I am not dumb.  I don’t want them to think that I am dull.  I want them to talk to me.  I want them to think I have something important to say.”

Despite helping David learn to read and write and speak, he taught me far more than I taught him. Working with him remains, to me, the single most important thing I’ve ever done.

Photo from http://www.thoughtsthatstick.com/

What do you consider to be your crowning achievement? Does it involve a child, your book, a job or a project, or something else entirely? Enquiring minds LOVE to know these things here at More Cowbell!

Jenny

Reminder: April is Autism Awareness Month. For more information, click here.