Rex

by Cathleen Lewis

  Then applause followed, either to encourage or because they thought the song was ending. Would it throw Rex? Disturb his timing in the second verse—the one he had struggled with during practice because of the large jumps it required his tiny hands to make? I glanced discretely at my son as he played through both laughter and applause, not at all distracted. On the contrary, it sparked him on. His face lit up at the sound—the laughter was joy to him, and the applause was the fuel he craved. That’s the way his body worked, as an energy sponge. His hands became stronger, more commanding, as he struck the keys with greater precision and his voice sang out with increased vigor. He now knew how many people were watching him and how enthusiastic they were! And he loved it! As he reached the end of the third verse, to which Richard had added a rousing blues finale, the whole audience was clapping along to the final beats. It spurred Rex on to the final, “Will you still need me, Will you still feed me . . . cause I get hungry . . . when I’m 64? Yeeaaah!”

  The applause was so thunderous that I thought Rex might fall backward off his bench. His eyes went round with exuberance, and his teeth shone bright in the spotlights as he leaned back on his tailbone and started flapping his arms rapidly in his gesture that said excitement was overwhelming his nervous system. He was laughing with such abandon, I wanted to just let it go. But I knew he needed to reign in his emotions to a manageable level, in order to continue, so I put my arm tenderly around his shoulder, in a gesture to calm.

  The apathy of the previous few weeks was clearly a dead issue. Now we were tipping the scale to the opposite extreme as Rex began the only classical piece on the program, Beethoven’s Sonatina in F. It required speed and precision, with the left and right hands playing against each other. He played the piece as though he had pressed the “automatic” button on his hands, setting them loose, while his mind remained caught up in the audience response. His eyes were still alight and far away, not encapsulated in the music, and he punctuated intermittent phrases of the melody with laughter. It was fun. It was funny. It was joyous. No one had ever had such a good time playing that Sonatina. It was like he couldn’t believe himself what was happening to him. As he laughed his way into the final notes, the crowd roared, loving the child and his unconstrained joy even more than the music, with spectators and performer feeding off each other in a sort of escalating response crescendo.

  The expression on my son’s face beaming in the spotlight, sparkling like a rare and priceless diamond, swept over me like a heavenly torrent, a revelation. Music was Rex’s heart, his soul, the special gift God had given him to communicate like no other. It was his language—his grace. I would keep fighting the external battles of our lives, trying to push back the clouds of our existence, but his was an internal battle, and the look on his face said his spirit was winning.

  CHAPTER FOURTEEN

  Beyond the Music

  Hope is that thing with feathers that perches in the soul

  and sings the tune without the words and never stops . . . At all.

  —Emily Dickinson, poet

  I don’t know where Rex’s music is going in the future. Hopefully as far as possible. But I think the most important thing is that it connects him to the world, that it gives him a sense of who he is, that it helps him to socialize. You know, he loves the applause. It really hooks him into the rest of the world.” My words, answering Lesley Stahl’s question, said it all. They also brought Rex’s 60 Minutes profile, “Musically Speaking,” to a close as the logo clock ticked in the station break.

  Rex’s classmates clapped, shouting, “Great job, Rex!”

  “Thank you very much,” said Rex, laughing, on a high from watching himself on TV.

  His principal, Pat Cairns, who had been so supportive ever since he’d entered her school, walked over to where we sat on the couch and said, “That was beautiful.” She was beaming. I felt relief that the profile had truly caught the beauty of my child, and that I’d been right to trust the filming to go forward. We had gathered at a classmate’s home for a “pool and viewing” party so that Rex could be with his peers as we watched his profile air on the year’s season premiere for 60 Minutes.

  But after months of excitement surrounding this profile, I wanted our lives to return to a semblance of normalcy. Inevitably that meant a change of piano teachers, a change from Richard’s obsession with the science of “savant” back to the purity of the child, great composers, and the music. Fortunately, this also came at a time when Richard, who was a piano teacher only by passion and not profession, was struggling to keep up with the infinity of Rex’s musical brain, feeling the weight of his charge.

  Chance led us to a brilliant, somewhat-eccentric man who had been a concert pianist and who, incidentally, had vast experience working with the blind. His name was David Pinto, and he knew how to teach Rex from day one. His own quirkiness and originality was the perfect match for Rex’s own. He met Rex on his own level—bringing his own creative genius to whatever childlike need Rex had at any given moment (and this from a man in his late fifties).

  By the time we met David, Rex’s hand’s had desensitized enough to not only touch, but actually seek out the “soothing” feel of edges and cracks and seams in different surfaces, whether wood, concrete or fabric. It was another repetitive, obsessive movement, but one that was discrete, and which also seemed to calm Rex and provide him with a sense of order. When he was “feeling seams” as I called it, I knew how hard it was to get his attention, and David learned quickly. During his first lesson with his new teacher David said he needed to work one-on-one with my son. So I planted myself a little hesitantly, but silently (as requested) in a distant corner of the room, and watched my eight-year old son dash off a few notes on the piano. But then as David started to say something, Rex removed his right hand from the keys, dropping it to explore the leg of the piano bench, and discovered grooves carved in wood! He couldn’t pull his hand away as his index finger circled the leg again and again. And what David had intended to say faded in Rex’s unhearing ear to “blah, blah, blah,” a voice with no meaning to the autistic brain intent on feeling piano bench grooves. Well instead of attempting to instruct Rex to get his hands back on the piano, which Rex would have heard as more “blah,” this clever man sat down cross-legged on the floor next to my son and said, “these grooves do feel pretty good, shall we count them together?” After joining Rex in counting piano bench grooves he moved the numeric idea along to beats in a measure. And moved Rex’s hand back to the keys, from mindless repetition back to piano notes.

  In Rex’s entire life I had never met a teaching professional of any kind who could establish an instant rapport with my son. He had been able to keep him captivated and involved from the very instant they met, and all without any input from me. And so David Pinto became the undisputed master of helping Rex learn not just music, but musicianship through creative fun. He was in the process of founding the Academy of Music for the Blind, which would incorporate other skills, such as rhythm and dance and social skills, along with piano, to develop the whole child.

  What could be better than this ingenious and holistic approach of learning to tango and tap-dance in addition to piano? But the problem was the sixty-mile commute through heavy Los Angeles traffic it took to get to his establishment. We could go on Saturdays before the traffic hit, but we also needed to be practical. And that meant finding a suitable local teacher who also placed the child before the science. I hoped we could find local support from his original teacher, Lynn Marzulli. Regretfully, this man, who had described my son’s gift as a touch of the Divine, could no longer help us. As with Richard Morton, Rex had moved beyond Lynn’s skills to teach since Lynn was primarily a composer, not a teacher. But he told us about a woman who could sight-read even the most complex musical scores, assuring us she could stay beyond Rex for a good many years. Her name was Sara Banta, and she was the head of instrumental music at Pepperdine University, right next to our home.

  We made an appoin
tment to meet her in a music rehearsal room on campus, where we found the woman alongside two massive Steinway concert grand pianos. I saw kindness in her eyes as she smiled at us in welcome. “I watched the 60 Minutes piece, and I’m happy to give it a try,” she said, then added, “but I’m afraid I don’t know anything about teaching a blind child to play the piano.”

  “Don’t worry, Sara. All you really need to know about Rex you’ll learn from being with him, not from a bunch of reports. Rex’s two former piano teachers didn’t have any experience teaching a blind child either. The training comes in the doing.”

  Sara invited Rex to sit down. I helped my son position himself at the nearby piano as she went around to the second piano. He had begun testing the notes before he was even seated and immediately began improvising, loving this big, resonant instrument.

  Sara had an uncertain, questioning look on her face, not really knowing where to begin or whether she should cut in on his melody. But he wasn’t about to stop, so finally she suggested, “Would you like to play something for me, Rex?” His voice remained silent. He hadn’t even heard her. Only the depth and resonance of this Steinway could speak to him.

  “I don’t think he heard you,” I said, already beginning the Rex education. She would teach him piano, and in return, she would be required to learn about this special boy.

  Sara probably wasn’t used to students ignoring her, but she caught on quickly. She watched for an opening, a break in his notes, and then jumped in on her own piano, mimicking his melancholic style for a few measures. That got his attention, and he listened, intrigued now. She let him back in. Then after he’d played his own measures, he stopped, expectant.

  Sara’s fingers turned melancholy to lightness and cheer, calling it a “Mozart style,” with trills and runs up and down the keys. Cheery was good, and Rex giggled, hardly able to wait for his turn. He practically fell on the keys when she stopped. The dialogue had begun.

  Her eyes widened as she watched him play back to her. Then she shook her head at the speed and creativity of my son’s responses. “None of my college students can respond that quickly, that intuitively,” she said. She began nodding her head now, effusively, and smiling broadly. And as her hands jumped back to the keys with extra vigor, she added, “This is going to be fun!”

  And with that, Rex and I found what would become our new musical home at Pepperdine University, with a lovely woman named Sara. It was a wonderful feeling, having his musical development in her capable and caring hands along with those of David Pinto and his academy. It allowed me a new sense of peace, having found two solid sources of musical input for Rex. And his music began moving forward at an accelerated pace.

  Meanwhile, I felt the need to find other ways to connect him to life, to keep all the rest moving forward as well. As his sensory system matured, allowing him to progressively overcome his touch and sound aversions, the world was becoming increasingly accessible. This allowed us to accept some invitations for Rex to perform his music at various educational and inspirational venues, requiring travel. I thought his music provided a means for Rex to have new and varied experiences that taught him more about the world beyond the music—a means to an end, a connector to life.

  “Get ready for takeoff,” he would shout excitedly at the new experience of an airplane. Or, “Touchdown,” followed by “Put on the brakes,” as the plane would land and come sliding to a halt. Or, “Make the fire go whoosh,” as our hot-air balloon soared over the same desert, after performing his piano at a YPO (Young Presidents Organization) educational conference. Rex’s cry for adventure was obvious in his appeals to others—to pilots and drivers. But there was another cry I felt even stronger—a cry to do for himself, a cry for freedom—the cry of the blackbird.

  Rex’s father, William, lived in Utah, a stone’s throw from various ski resorts, and so it was the perfect opportunity to get Rex on skis. As luck would have it, the Park City Ski Resort was the home of a ski school for the disabled, the National Ability Center. I’d booked him a couple of two-hour ski lessons during our stay with his dad. “I’m going to bomb down the ski slope,” he announced the morning of his first lesson. He was using his father’s words and didn’t yet know their meaning. Same thing for his parka and powder pants. He wondered why he was wearing these fluffy, awkward clothes that made him stiff and robotic as he tried to walk to the car.

  We drove to the Center, which was located right at the base of the mountain. We’d been told they’d have skis and boots there for Rex, as well as gloves and goggles. Rex was excited as we walked through the door and were introduced to a well-tanned ski instructor named Don who would be giving him his lesson. “I’m going to bomb down the ski slope,” Rex stated once again to the man.

  “I’m sure you will, but first we have to get you all suited up in your bombing-down-the-mountain gear, okay?” the instructor said, not missing a beat.

  “Okay, Don,” Rex said confidently.

  “First, I’m going to slip a little vest over your head, Rex, just as a little precaution,” he announced, tying the side straps to secure the bright orange vest, stamped with glaring black letters, which said, “Blind Skier.” Catching my eye, he explained, “It’s for safety.”

  Meanwhile I was struggling to get his ski boots on. “I don’t want to go skiing,” he cried out suddenly, his previous anticipation now obliterated by very real hypersensitivity, as the first boot grabbed and squeezed his foot. His free foot started kicking forward to avoid the other torturous boot.

  “It’s just a ski boot that will help you bomb down the mountain,” I said, praying his still-sensitive feet and hands would not put a stop to the whole thing, right then and there.

  “You’ll see, Rex. You’ll have a blast,” Don promised in a confident, relaxed voice that calmed Rex’s foot long enough for me to slip the other boot on. “You’ll need some gloves too, Rex,” the instructor said matter-of-factly, picking through a box until he came across a pair that looked about my son’s size.

  However, feet were one thing, hands quite another. He batted and flailed, not letting the thing on, until I grabbed his hands, saying, “You won’t be able to ski without gloves to keep your hands from freezing, Rex.” But reason was useless in the face of this kind of autistic sensitivity, and his fingers crumbled up into a ball and simply refused to be pushed into the gloves. Don raised his eyebrows—for a first time—but went back to the box. This time he chose a pair of mittens that opened up with a zipper on the back. That might do the trick. So I uncoiled my son’s fingers, flattened his hand, encased it in the mitten, and zipped before he could refuse. Same process with the other hand, and he was protected from the cold. His hands stuck straight out like rods, as though getting his hands as far away from his body as possible would also distance him from the mittens. And he was now completely stiff as he stood up.

  “All right, Rex, looks like we just need some glasses or goggles and we’re good to go,” Don said.

  But on that one, my son laid down the “law of Rex.” “Take the glasses off !” he wailed, shaking his head violently once I’d stuck them on.

  “Okay, okay, Rex, you don’t need to wear glasses,” I assured him, removing them quickly, seeing my son at his limit. “It’s not that sunny today, so you can just wear your hat.” I popped his baseball cap onto his head, hoping it would be enough to protect his sensitive eyes. Once again, I found myself in that balancing act between what I knew Rex needed for his health and safety and what his sensory system would allow. There he was, fighting that incessant internal battle of his own, fighting autism’s relentless grasp on his brain, needing to overcome his own body to get the freedom that was so easily attainable for others. And I had only one recourse in it all—to maneuver the external, attempting, as always, to pave the way for him.

  But how far should I push? I asked myself as I watched my son seeming to withdraw into the shell of his equipment. He didn’t even know what skiing was. It had all been my idea of something he�
��d enjoy, knowing his love of physical movement and fast and jerky sensations, but maybe he wouldn’t like it, maybe it was way too much. An outsider looking on might consider I was torturing my son, forcing this on him. But remembering back, the same could have been said when I was smearing food on his refusing lips to get him to eat or forcing him to straighten and strengthen his spaghetti legs when all he wanted to do was collapse. And now he was a hearty eater and had strong, capable legs. This was the same thing. I felt God asking me once again to step out in faith. Walk by faith, not by sight. I had to push forward, trusting, or we’d never know, even though I acknowledged a fundamental difference between eating and walking, and skiing. Before, it had been for my son’s very survival that I had been unrelenting, and now it was so he could get the extras. I felt a lump growing in my throat as I remembered how far we’d come. Then I clutched my son’s stiff hand, led him haltingly out the door of the Center, down a small ramp, and onto the snow, leading him beyond mere survival toward “quality of life.”

  Don was taking it all in stride as he witnessed the extreme reticence that had replaced his student’s prior enthusiasm. Rex was taken aback when he touched the “crunchy” snow. He hadn’t known what it would be like, even though I’d tried to explain it to him. He had to experience it himself. “It’s a little crunchier, but it’s soft like sand, isn’t it, Rex?”

  “Yes,” he said, but he didn’t look convinced as he plodded tentatively forward to where Don had placed his skis in the snow.

  “Rex, I’ve got your skis here, and I’m gonna just help you put your right foot in,” the instructor said. “Just hold on to your mom.” With me clutching hold of my son, since his ski mittens made it impossible for him to grab anything, Don lifted his foot, placing the toe into the ski binding. “Now stomp your heel down, Rex.”