Cathleen Lewis - Rex: A Mother, Her Autistic Child, and the Music that Transformed Their Lives

2008 by Cathleen Lewis

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Scripture quotations are from the Holy Bible: New International Version 1973, 1978, 1984 by International Bible Society. Used by permission of Zondervan Publishing House. All rights reserved.

Transcript of 60 Minutes interview with Lesley Stahl is courtesy of CBS News MMV CBS Broadcasting Inc. All Rights Reserved.

ISBN 978-1-59555-208-2 ( IE)

Library of Congress Cataloging-in-Publication Data

Lewis, Cathleen, 1957
Rex : a mother, her autistic child, and the music that transformed their lives / Cathleen Lewis.

p. cm.
ISBN 978-1-59555-150-4
1. Autism in children. 2. Autistic childrenFamily relationships. 3. Parents of autistic children. 4. Music therapy. 5. Creation (Literary, artistic, etc.)Therapeutic use. 6. AutismTreatment. 7. Autistic childrenBiography. I. Title.
RJ506.A9L49 2008
616.85270092dc22
[B]

2008023100

Printed in the United States of America

08 09 10 11 QW 6 5 4 3 2 1

In loving memory of my mother, Fauvette,
that you could have lived to know the blessing of Rex.

If I can love fully and completely as a mother,
its because you loved me fully and completely as a child.

Contents

I walked into the room holding my sons hand. He was excited and buoyant, and his springy steps showed it. As he approached the woman who stood waiting to greet him, his body was almost electric, a grin stretching across the width of his round face. She was elegant as usualperfectly dressed and perfectly coiffed. She was smiling as he approached.

His enthusiasm preceded him, announcing before he even reached her, Its nice to see you, Lesley. Are you having a good day?

Lesley asked if they could shake hands. He extended his hand out limply, a notably odd contrast to his otherwise vigorous and exuberant body movements. It appeared so fragile. But the womans handshake was like a shot of adrenaline to him, and his hand suddenly went taut in her grasp. On pulling it away, he began jumping up and down for a few seconds, and when he stopped jumping, his body seemed unable to contain the emotion. His arms suddenly bent at the elbows, his forearms moving up and down in a rapid flapping motion, while his head began shaking from side to side, like a windup doll suddenly gone haywire.

Lesley didnt appear fazed by this sudden and extreme display of excitement and erratic body movements. A consummate professional, she instead merely said, Rex, why youve grown so tall in the last two years. Lesley Stahl had recorded her first profile on my son two years earlier when he was only seven. Now she was back to see how he was doing.

I stood behind him and laid a hand on each shoulder, applying subtle pressure, which helped his body regain control.

How old are you now, Rex? Lesley asked.

Nine years old! he said, as though it was a proud accomplishment. But he didnt linger there, his thought process already moving forward. I like you, Lesley!

When Lesley responded in kind, perhaps hoping to then move forward in the conversation, Rex said, I like you so much, Lesley!

So Rex, what grade does that put you in now? Lesley asked, referring back to his age, while ignoring what he had just said. I didnt say a wordId been asked to refrain from speaking as much as possiblebut I knew what not intervening would mean.

He repeated eagerly, I like you so much, Lesley, and awaited her response, like he was stuck in gear. Again, she refrained from responding, presumably waiting for him to answer her question about his school grade. I bit my lip as he said again, automatically, I like you so much, Lesley. A broken record. And a stalemate.

Finally, another woman in the room broke in. Shari was the producer, supervising the cameras and sound. The CBS television newsmagazine 60 Minutes was here in force with correspondent Lesley Stahl, who had arrived that day, heading the team. The producer had spent a few days with us prior to this interview, and she explained the situation to Lesley. Hes waiting for you to say, I like you so much too, Rex.

My son had his scripts... indeed he broke them with difficulty in everyday conversation. Until Lesley responded in kind, I like you so much too, Rex, he would be locked in place, unable to move his thought process forward. It was as if he was an automated phone menu, which, not getting a proper response, loops back endlessly to the original cue. Her like response would provide the completion he needed to free him to answer her questions.

I like you so much too, Rex, Lesley said, complying.

It was instantaneous. His body visibly relaxed. And though it was less noticeable, mine did as well as he began to answer her questions.

Although she had stood up to greet Rex as he entered, Lesley was now seated with him standing in front of her, putting them both at eye level. Rex had relaxed for only a moment, but now his body had turned once again to extraneous movements and excitement. She asked if she could support him with one of her hands, but he couldnt seem to hold his arms still enough for that. Again, I tried the best I could to drain some of the excess adrenaline out of him by putting a calming hand on one elbow. It would be hard todayRex was just too amped up.

Lesley continued to interview my son in what was a labored process for him. He sometimes maintained his silence, seemingly confused by a question, or simply answered yes or no without further explanation.

Have you ever been in a swimming pool? Lesley asked him.

No, he answered immediately. Shari had asked me not to jump in unless it was necessary. They wanted Rex to answer on his own, but I couldnt let this one go because I felt his answer to one of his favorite activities called for a little nudge.

But Rex, we have a pool at home. You love swimming, I prompted him, trying to focus his mind on the question at hand.

So, you do swim? Lesley pressed.

Yes, he said. His body was calm now. He was trying so hard. The cameras had caught the whole thing.

He hadnt been expecting the question about swimming pools. Maybe that was it; the context had confused him. Or maybe it was the word ever. Did Rex understand what the word ever meant? It was such an open-ended, abstract word. Surely if shed asked him if hed been swimming yesterday, he would have answered with a hearty, Yes, Lesley! Maybe even adding, And I had a great time swimming. A question needed to be concrete, limited in time and space, in order to be answered by my son.

We were hitting dead ends with too many questions, until Lesley asked him about an autobiography he had written for some students in North Carolina who had mailed him letters. In answer, he recited the whole autobiography verbatim, unable to contain his enthusiasm. It was a script, merely rote memorization, so it was easy communication for him. As he finished by saying, Im learning to snow ski. I like to ski full speed ahead! he was every bit a child who loved his life.