KD was pushing independence, I could see that as Rex led with his cane. This was good, but it seemed to take forever to get to the table to join the others. And then, when they finally got there, came an endlessly long process of getting him seated at the table, reminding me of his physical therapy sessions. Find the table, then the bench, sit down, swivel right leg, then left leg over to face the table. There it was, another sequence, but here it seemed interminable. KD gave him minimal assistance, and he finally made it. His aide then placed his lunch container on the table, and just as I was thinking how grateful I was he wasn’t refusing to eat these days, Justin and another boy finished their lunches, having obviously gobbled them down, and ran off to recess. By the time KD unscrewed the top on Rex’s container, two girls had left the table. I wanted to hold the kids there, or hurry Rex up; the whole thing was beginning to make me uncomfortable. By the time he had finally scooped his lunch onto his plate, the others had gone off to play. Off to play, while Rex’s work was just beginning. There he sat, my little son, scooping and spilling and scooping again, eating his lunch all alone with his aide.
Finally he made it to the playground, where I hoped he would join some of the others to play. But each time he managed to catch up to a couple of classmates, they would be at the end of their activity and running off. I saw it on the climbing structure and the teeter-totter boat, as if he was out of sync and just couldn’t quite get there in time. A student who wasn’t in his class came up to him as he walked toward the swings, maybe to greet him. KD looked to be trying to facilitate interaction, to hold the boy there with Rex, but could keep him only a second before he ran off again. With only minutes to the bell, Rex climbed on the swing. As the other kids were now moving in the opposite direction, heading back toward the classroom, there he sat at the far extremity of the playground, swinging back and forth with the faithful KD. He seemed content in his own little world, with KD clearly filling in a lot of gaps. And once again, it was clear, his aide was his friend, but what about other kids? Was there not even one playmate? And as I watched my little boy being pushed by his tall companion, seemingly his only school friend, my heart ached for him, flooding me with an intense feeling of loneliness.
The bell rang, and Rex’s classmates headed either for parent pick-up in the front of the school or to catch a bus at the back. I’d come from my observation point in the parking lot to walk Rex over to the birthday party. As we approached the picnic table, I was determined to help my son get to know some of the kids at Arthur’s party. I was determined now to get him to be included with the others. The table was full of kids I didn’t recognize, except for Arthur and his older sister. Arthur’s mother was getting the cake out and passing around paper plates. It would be a simple gathering, and the good news was that the kids would obviously be captive here at the table, eating cake, and couldn’t leave Rex in the dust. He would have a chance!
Rex and I sat at the end of the long table, across from a girl and two boys. My son looked small next to this table full of first graders, and Arthur was down at the far end. I asked the girl next to him her name. She looked shy and said, “Susie.”
“Susie, this is Rex. Rex, can you say hello to Susie?”
He said, “Hi, Susie. It’s nice to meet you. How are you today?”
“I’m fine,” she said, giggling like a shy first grader meeting someone new.
Then I asked the girl across the table her name. She said it was Maria. Rex said, “Hi, Maria. It’s nice to meet you. How are you today?”
“I’m fine,” she said, giggling as well, but this time it was more amusement than shyness. I thought it was because Rex’s voice still tended to be singsongy, especially when he spoke lines that were rote to him, like greetings. It sounded a bit robotic, I suppose, with the same tonal cadence repeating exactly the same words, like he was repeating lines from a script.
What happened next had a sort of surreal quality about it, it happened so quickly. Indeed, far too quickly. I turned to the boy across the table. His name was Drew, but this time when Rex repeated his scripted greeting, Drew didn’t say he was fine. Instead, he began mimicking my son to his buddy on the bench next to him: “It’s nice to meet you. How are you today?” This incited his friend to pick up the beat, and he began parroting Rex as well: “How are you today? How are you today?” Then they began laughing, making themselves hoot. Maria looked uneasy, having caught the outrage in my eyes. Before I could say anything, Rex had plunged his fingers into his ears, hiding from their taunting voices. But the boys were caught up in their own meanness. They’d found their mark, and they were going to drive it home now. Before I knew it, the boys had stopped the mimicking and had now begun whispering to each other while pointing at Rex, who was just now daring to pull his fingers out of his ears. Suddenly, Drew flung his hand out and began waving it right in front of my son’s face. When there was no response from Rex, who obviously hadn’t seen the hand, his friend did the same thing. And that really made them hoot!
I had felt hurt rising in me when they had first parroted my child’s voice. But now, as Drew flung his hand out once again, a real bully on a roll, the hurt changed to rage. Standing up, I grabbed the waving arm as it approached Rex’s face. “Stop it!” I shouted, his arm still in my grip. “What do you think you’re doing? Do you think it’s funny to be blind? To not be able to see?” I was looming over Drew now, having released his hand. “How dare you bully a blind child! How would you like to have to try so hard all the time? Yeah, you don’t know anything about trying, do you?”
“Stop it!” I shouted, his
arm still in my grip. “What
do you think you’re doing?
Do you think it’s funny to be
blind? To not be able to
see?” I was looming over
Drew now, having released
his hand. “How dare you
bully a blind child!”
The anger in my voice as I shouted made the boy shrink down and back into his friend’s shoulder. No longer a bully caught up in automatic meanness, knifing until he drew blood, he was changing back into what he was, a six-year-old who had obviously not intended to take on an adult. He was a kid again, and I was an adult, and he got what that meant, murmuring, “I’m sorry.”
With my eyes locked on the boy, who didn’t dare look away, and barely controlling myself, I said, “How would you like it if your eyes were broken?” In one hurried movement, I whisked Rex off the bench and then, putting my arm around his shoulder, I hustled him away from that table. I needed to get him away, to get him home to safety.
CHAPTER NINE
Savant
The human mind—so mystifying in its capacity to accommodate
both disability and genius in the same person.
—Lesley Stahl, 60 Minutes correspondent
Who was I kidding? Rex wasn’t even safe in his own home. As I watched my son struggling to find his rocking chair in the living room, I wondered how many times I had walked him through the route—twenty-five, thirty times? Giving him the essential spatial indicators: pass the big fluffy chair (feel the wrought-iron frame), the coffee table (feel the stone edge), then turn left to the chair. Yet he did the same thing all the time—he got lost in this small room. He had made it past the coffee table, but then he had turned right instead of left, bumping into a plant. The leaves brushing his face made him stop, then take a step backward. But then, as though the plant would just go away on a second try and the rocking chair would magically appear, he stepped right back into the plant. Touching leaves again, he looked confused. Where did the rocking chair go? “The rocking chair is to your left, Rex,” I said, trying to keep my voice level. “It’s where it always is.” Finally, he turned left, but he might have walked right in front of the chair if his right hand hadn’t mercifully grazed the armrest.
On other days, without my help he might have circled the coffee table endlessly. It was like his brain was filled with spatial confusion. Th
e routes I had worked on with him, again and again, came back randomly when he tried them on his own. Today, once he found the rocking chair, I watched him place his right hand on the first armrest, like I had shown him numerous times. A reference point. But instead of locating the seat and turning his body around in front of the chair so he could sit down, he swiveled his body in the wrong direction. That put him to the side of the chair, causing him to try to plant his bottom in open space! He just didn’t get it! I couldn’t just sit back anymore, not today, when I was still reeling from school bullies, and so I rushed to assist, to provide safety once again.
The only thing Rex could find easily in the room was his piano. It was uncanny, almost like that little keyboard was emitting an electronic pulse my son couldn’t miss, and he would walk straight to it every time, sitting on his piano chair with ease. No randomness there! And there was certainly nothing random about his sense of space when he was seated at the keyboard. Each interval seemed to make sense to him, his fingers knowing how to jump to the notes he wanted, and his brain could relax and just “be.” And he was safe. There at his piano he was safe.
It was the safety of that piano that I needed on what I considered my least favorite holiday, at least since Rex’s birth. For the last five years I had considered Halloween a chore, an obligated ritual, unchosen and unwanted. Ghosts and goblins had been such fun for me as a child, but now they were just unseen costumes that meant nothing to my son. And what was trick-or-treating? Getting a bag full of candy he couldn’t eat? But this year I had wanted to get him connected somehow to the holiday, at least to the social side. In the aftermath of those boys making Rex a target for ridicule, I accepted a mother’s need to keep her son safe, to protect him, but I knew that withdrawal wasn’t the answer. Somehow I needed to bring safety to the real world for Rex and for me.
Although ninjas and pirates had been popular the morning of his school Halloween parade, on this holiday of childhood dreams and fantasies, Rex had to go as what he was—a musician. Not just any old musician, but one he would really relate to. Who else but one of the Beatles? However, it wasn’t the black suit or white shirt or even the Beatles bob hairdo that meant anything to him. It was only the mini-accessory guitar slung over his shoulder and the songs “Hey Jude” and “Yesterday” he got to play on his keyboard during his class party that allowed him to understand why he was supposed to say, “I’m dressed as Paul McCartney” whenever someone asked. Safe and yet connected.
Rex’s school activities were followed by a Halloween party in our condominium clubhouse. It was a first for us, since I’d never dared come to such a party with Rex’s ears still so sensitive. But this year, in the form of his keyboard, I’d found an entry point for us into that noisy environment. With swirls of ghostly white cobwebs hanging from the ceiling and jack-o’-lanterns flickering by the entrance door, I stood by Rex in the far corner of the clubhouse. With his costume accessory of McCartney’s bass guitar lying next to him, he was filtering out the party din by playing “Let It Be” on the piano. As I took in the room—mostly adults, with a few kids—I had hopes of actually getting to know some of my neighbors tonight.
A couple who lived a few doors down from us meandered over, catching the last half of Rex’s song. When he finished, the man said, “You’ve given ‘in costume’ new meaning. That was amazing.” Rex seemed to be enjoying himself, proceeding through his Beatles repertoire, playing song after song, so I took the opportunity to leave him “safely independent” as I crossed the room to have a rare moment of adult conversation. After a couple of minutes of conversation, I was about to rejoin my son when I became aware of a tall gentleman a few yards from him. The man was dressed casually, slightly rumpled, with the look of an intellectual. His head was closely shaven, to within a mere quarter of an inch, with a balding half moon in the front. But what was more striking than his appearance was the intensity of his gaze. He was watching my son, transfixed. A neighbor named Rick said something to the man, but he didn’t respond, so intent was he on studying a little blind boy playing a keyboard. Rex was oblivious to the rest of the party, but so was this man as he stood there, his eyes not wavering. I was just about to go introduce myself when a woman grabbed the man’s arm and pulled him into her group.
The party was still in full swing, but it was after Rex’s bedtime, so I unplugged his keyboard, getting ready to head home, when the man approached us. After a brief introduction that told us his name was Richard Morton and that he lived in the very front of the condo complex, he asked simply, “Has your son ever played a full-sized piano?” Without waiting for an answer, he said, “Because I have one in my apartment, and I think he might like it.”
I asked this Richard if he was a pianist, to which he responded, “It’s a passionate hobby, not my profession, but I’d love to have your son play my piano.”
So I put the question to him. “Rex, would you like to play a real piano?” Using “real” as the word he would associate with an eighty-eight-key instrument.
“You would like to play a real piano,” he answered. You would like to play a real piano! Even with pronoun confusion and echolalia combined to form a response, those words came straight from my son’s heart. I would take him to play our neighbor’s piano, but little did I know the dramatic events that would come into our lives as a result of this chance meeting at a party we almost didn’t attend.
Two days later we were knocking on Richard Morton’s door. His six-foot-three heavyset frame towered over my diminutive five-year-old, providing a striking visual contrast as we walked into the room where the piano was located. “I’m so glad you could come, Rex,” he said, smiling broadly. Richard was dressed in baggy shorts and a T-shirt, standard beachwear, and in spite of the intellectual air about him, the excited twinkle in his eye gave him a childlike quality.
Rex laid his tiny fingers on the piano, and he became instantly captivated. This instrument had the rich tonal quality of a real piano, but because it was digital, he didn’t have to fight with the keys to get sound out, and my son’s usual light touch was sufficient. Absorbed into the rich resonance of the notes, his improvisations took flight.
Richard watched with a look almost as faraway and absorbed as the one on my son’s face. “No one taught him how to do that?” he asked in disbelief.
“No. He’s taught himself everything,” I said. I also knew that Rex’s home instrument would now need to be seriously upgraded.
“Unbelievable!” he said, shaking his head in amazement at Rex’s mastery of the keyboard, the quality of the harmonies he was creating. After watching in silence for many minutes, Richard asked, “Rex, can I play something for you now?” I helped my son off the bench and onto my lap; then our host took his place.
He turned to us and said, “How about a little Bach?”
I repeated the question to my son. “Rex, how about a little Bach?”
Rex’s answer was complete echolalia. “How about a little Bach?” he asked.
I nodded to Richard, and he said, “This is called the Goldberg Variation Aria: in the key of G.” The Bach notes were light and ephemeral, hanging suspended in the air at moments, and the look on Rex’s face said he wanted to rise up and grab them, make them his own, or maybe flit off with them. My son looked to be leaving his body there on his mother’s lap, while his spirit flew free and weightless on the melody.
“Did you like that one, Rex?” Richard asked as the final notes came to rest.
“Yes,” my son responded, in a trance.
Richard tried a couple of other pieces, but Rex started objecting very loudly, whining. So our host relinquished the bench back to his guest, otherwise known as my tyrant son. It was hard for Rex to be near a piano for long and not be the one doing the playing. I acknowledged he was a bit rigid in that regard, but it seemed to affect him so physically that I never went against his will. At home, nobody could even touch his piano in his presence. Now he was happily back in possession of those keys that were so es
sential to his being. But this time he didn’t begin more improvising. Instead, the melody that came forth, rising up from the keys, surging from the depths of Rex’s musical being, was what Richard had just played! He didn’t have to trouble it out or listen to it a few times, as he’d done with far simpler songs in the past, but he played the Goldberg Variation Aria melody back almost verbatim! My son’s tiny right hand had instantly replicated hundreds of notes, complete with intricate trills, while his left hand provided musically sound harmonies.
“How many times has he heard that piece?” Richard asked as soon as Rex had finished. It was a normal question, but the answer he got back was anything but, and left him dumbstruck!
Solemnly, I said, “That was the first time,” feeling reverence was required. Tears were rising up at the feeling of being blessed to bear witness to something so phenomenal and holy. No one spoke then, as though words simply could not express what had just occurred.
I began taking Rex to Richard’s house almost every day so he could play that piano he loved so. And the man who had studied music and musical theory in depth watched and assessed. He wasn’t a piano teacher; he was a writer and the intellectual I had taken him to be, a Rhodes scholar. Richard’s fascination in my son grew daily. After a couple of weeks he began explaining parts of my little boy’s gift to me in musical terms.
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