A conversation with Derek was like storytelling with Rex. He just made things up and fit it in, turning fantasy to fact. But he loved it, and people enjoyed his company. It was his way of being involved, apparently as far as his own mental development would take him. Adam said it best: “Rex is so much more cognitively connected than Derek.” That was the difference. Rex never made things up. Conversation was still a laborious process, not at all automatic as it seemed with Derek. But what he said was real, and that was why his words were few in comparison.
Ask Rex what he would like to get his mother as a present, and he would answer, “I don’t know.” The truth. I asked Derek that same question one day during a break in our filming, while we were strolling through an outdoor marketplace wandering among eateries and boutiques. “Derek, would you like to buy your mother a gift while you’re here in Malibu?”
Derek paused for just a second, before responding in an ingenuous, reflective way, “Why, yes. I think I’d like to buy Mary Ann [his mother] a glass of wine!”
It was cute and rather charming, coming from this aristocratically handsome young man with his upper-crust British accent, even telling of his mother’s tastes, but it was, of course, completely out of context.
During the course of the week we spent together, my fascination with Derek grew, and I found myself wondering how much of what I was seeing would actually be my son in a few years. Derek and Rex had been assigned the same highly unique label of prodigious musical savant, as if they’d gained entry into a club with only a handful of members worldwide. And yet they were individuals. While Derek’s neurological system seemed to border on hyper-tense, conveying almost manic energy at times that he pumped into his endless runs up and down the piano keyboard, Rex’s neurology tipped the scale at the other end of the spectrum. He was hypo-tonic, and it was a struggle to maintain his energy levels. Too much noise and mania around him caused him to shut down and become nonresponsive. Both boys found their balance in the piano—Derek using the instrument to calm and drain nervousness, and Rex using it to infuse energy and creativity into his body.
The two musicians spent the week together collaborating for the biggest performance of their lives, in front of an expected audience of ten thousand at the Mandalay Bay Hotel in Las Vegas. But it wasn’t the gloss of Las Vegas or the prospect of such a big event that became my snapshot for that week. It was the day Derek and Adam came to our home in Malibu, and we all took a walk down to the beach. That was the first time I saw Derek’s personality really shine through. While in London, it had all been about the music and playing piano together. And I’d never seen the young man smile, let alone laugh. He seemed to be the epitome of the dry, overly serious Brit, which was perhaps even accentuated by the mix of disability and genius—not what I wanted my son to become. But back in Malibu I saw quite a different young man in Derek unplugged.
The skies were gray in Malibu—not at all the image the British had of springtime in California, the land of endless sun—but the surf was pounding. Surfers were out in force on the Point, just north of our home, and with documentary cameras in tow, I led Derek and Rex and entourage down to the sand. “It gives atmosphere,” Derek’s piano teacher Adam assured me, when I apologized for the overcast skies.
Derek climbed down seventeen steps to the waterline. He counted the steps as he went, as Rex did, which made me think he did, in fact, have an awareness of numbers. Adam assured me his counting was rote and that he didn’t understand the underlying concept. I wouldn’t let it go, knowing how Rex was just the opposite with numbers, possessing an ability to count silently even such things as the number of times you moved the toothbrush back and forth in his mouth. It had to be exactly twenty in each quadrant. Accidently brush twenty-one times or nineteen, and you were in trouble! “That was twenty-one, not twenty,” he would say through clenched teeth.
Given Derek’s numeric sense in his music, I felt compelled to give him my own test. “Derek, could you clap five times?” Rex could do that in his sleep.
He began clapping as he counted, “One, two, three—” I interrupted. “No, Derek. Do you think you could clap five times for me without counting out loud?”
“I can do that,” he assured me. And began . . . clap, clap, clap, clap, clap, clap, clap . . . Adam looked at me with a smile as if to say, “Satisfied?”
Yes, I was satisfied. I knew my son and Derek were different beings, with unique challenges, in spite of their unique commonalities. But what came to define Derek for me went past the music and past the disability. The young man touched the sand. “Cathleen, I think I’d like to take a walk on the sand. Would Rex like to take a walk on the sand?”
“Rex, what do you think? Are you ready to show Derek your beach?” I asked.
“I’m ready!” Rex said, loving the beach and the adventure of Derek.
Rex was used to walking this beach, but Derek seemed a little reticent and off balance at first. We were all walking arm in arm—Adam, Derek, me, and Rex—trudging in partially wet sand, when I wondered what Derek would be like if I threw some unreserved California energy at him, as I did with Rex all the time. “Derek, shall we run into the surf ?” I asked.
“I think I’d like to run into the surf,” he responded in a rote manner, not knowing what was in the works.
“So let’s go!” I said with urgency that spoke as loud as the words. I moved Rex around so he was facing the water, obliging the others to follow suit, then charged forward. “Into the surf!” I cried out, pulling the trio forward as water splashed around our calves.
“Into the surf !” Rex repeated my chant, laughing as the water encircled his legs. Adam appeared a bit dubious but followed suit. We moved forward and back, advancing into the waves and then pulling back. “Into the surf, Adam and Derek!” Rex shouted again.
Derek was cracking a smile. It encouraged me to push for more. I wanted to see Derek really unplugged. I laughed along with Rex, pulling everyone forward again. “Derek, isn’t this fun running into the surf ?” This time, a slightly larger wave rolled in to clip the bottom of the young man’s rolled-up trousers.
His smile broke into a laugh, which was hesitant at first but began escalating with our movements. “Yes, Cathleen! This is fun running into the surf !” he responded, using echolalia laced with excitement. I didn’t know Derek had laughter in him, but once it broke loose, it became infectious.
I looked out on our ocean to see three different surfers jumping atop their boards just in time to catch a long, rolling wave. They were at one with nature and their sport, and it all looked effortless, a seamless choreography dictated by the waves—dip and lean, shift, straighten.
Adam saw the surfers, too, and made a suggestion. “Derek, since we’re in California, would you like to sing some Beach Boys?”
Still laughing, Derek said, “Why yes, Adam. I think I’d like to sing some Beach Boys.”
And before I even had a chance to wonder how Rex would do with the older British boy singing the classic sun-drenched vacation songs, Derek and Adam had begun “Surfin’ Safari.”
“It’s a song about surfing on the waves, Rex,” I explained, and joined the singing.
With the three of us singing the California beach classic, Rex shouted, “Into the surf one last time,” as he tugged on my arm.
Rex had picked up the chorus, and as “Come on a safari with me . . .” trailed off, Derek shouted, “I love the Beach Boys!” His accent held a touch of British restraint, but his enthusiasm was cut loose, signature California, so reminiscent of his wild, take-no-prisoners improvisations on the piano.
“I love the Beach Boys too!” Rex mimicked, suddenly sounding British himself. And they both burst out laughing, with Derek’s head and torso bobbing forward and back and Rex jumping up and down in the sand. I looked from my little boy to this charming young man, who had so much life inside him to be brought out, and was filled with hope for the future.
At the end of our week together, Rex and Derek
miraculously pulled off their performance at the Mandalay Bay Hotel stadium in Las Vegas. It was big and glitzy and glamorous, and they played beautifully together, but what I remember best about our week with our British friends was conversations with Derek—the yarns he would spin, manipulating words like music to keep the communication going and connect to others—and that day at the beach, laughing and singing and charging forward into the surf, experiencing life.
CHAPTER SIXTEEN
Rex’s Time
I know the plans I have for you, declares the Lord , plans to prosper you
and not to harm you, plans to give you hope and a future.
—Jeremiah 29:11
Musical collaboration with Derek opened an important door for Rex, which came at the same time he finished fifth grade and graduated from elementary school. Over the next months, his musical speech took on new depth. In addition to his numerous solo performances around the country, he began playing with other musicians in his new middle school. Meaning his school peers! This was what I had been hoping for all along, but it hadn’t been easy, and was still a work in progress.
Middle school presented a lot of new challenges to Rex . . . and sources of potential anxiety for Mom—bigger, noisier campus, bigger, tougher kids, changing classrooms throughout the day. But Rex’s musical experiences, and life experiences, and with all the travel and newness, had paved the way for these new daily challenges to his body and mind. He was ready to take on middle school! And by the time we approached the end of his first year of middle school, I had to acknowledge just how much had changed for Rex—in his music, his life, and now at school. Educational issues which had continued to gnaw at me from one degree to another throughout his elementary years, from academics to opportunities to his mixing with other kids, now seemed mostly moot with his entry into middle school and two teachers who really got it . . . and got him.
The first was his special education classroom teacher Lisa Szilagyi, affectionately known as Lisa S. She was his “base camp (or classroom) teacher where he spent a couple of periods a day, working on special skills, from which he then traveled out to other selective “mainstream” classes. Lisa S. redefined “excellence in special education” by working creatively . . . and collaboratively (yes!) . . . to bring out the essence of Rex. She made sure he got numerous opportunities to use his gift to bridge social and educational gaps. And she was able to create that appropriate education (meaning relevant to his life) the law had promised him all along, but which, if truth be told, his elementary school teachers had never quite managed to give him, in spite of the support he had always gotten from caring one-on-one aides. As a result, instead of coming home exhausted by this new, more challenging environment, he seemed to be infused with energy. I’d collect him off the special education bus, which he rode to and from school each day now, and on many a day, he would quite literally be singing (well, let’s say humming) as he stepped from the bus.
Secondly, there was his Period 1 teacher, Bill Bixler, who taught concert band and who was instrumental in affirming Rex in his new school setting. I saw the immediate connection between the two at the very beginning of the year. It was Back to School night, and being new to the middle school “changing classes thing,” Rex and I were running late in finding classrooms. By the time we got to band, the teacher was introducing himself to a room full of parents, sitting wedged between percussion, keyboards, and music stands. “I’m Bill Bixler” he was saying as Rex tromped into the room, with his white cane leading the way past an impressive set of drums. Hearing his teacher’s voice my son confidently announced to all, “Well, I’ll just call you Bill!” Parents couldn’t help smiling, and the band teacher chuckled at the interruption, saying, “It’s nice to see you Rex. And I’m looking forward to your playing piano with us this year.”
His concert band teacher encouraged Rex’s participation in his class, understanding just how important this would be for his life. However, in the beginning of the year, Rex could barely tolerate all the other instruments and the kids in the class, who might be playing wrong notes, or tuning their instruments, or who might simply be in “his musical space”! He would ram his fingers in those sensitive ears, flap his hands to distraction, or just need to leave the room. Rex had made tremendous progress in desensitizing other sensory issues, but music was his sensitivity stronghold. His gift played against him in this area with his musical brain too finely tuned. It seemed his genius had created a level of intolerance that was unbridgeable. But his band teacher took it all in stride, countering any inflexibility in Rex with his own easygoing flexibility, and ability to go with the “Rex flow.” And over the months, the miraculous once again began to unfold—my son’s “sense of affront” began to change. That frustrating brain rigidity, born of autism, was being dealt just enough of a daily blow to progressively stretch it out (without breaking Rex in the process). This created much greater flexibility and a huge increase in what he tolerated. And as a result, the year saw Rex’s dramatic transformation from a child who could barely tolerate musical exchange, even with a brilliant musician like Derek, into a young man who was emerging as a collaborative musician. And yet, I did need to admit that “emerging” was the operative word here.
The defining moment was at the Malibu High School spring instrumental concert, where he would be performing Mozart’s Eighth Piano Concerto, backed up by the school orchestra. Rex’s band teacher had given him an invaluable opportunity and demonstrated confidence that his student would rise to the occasion of being a team player in front of an auditorium full of parents. Playing with a whole stage full of other musician peers would show how music could help him connect to others. At twenty-six, Derek had been described by his teacher as a bomb proof performer. This event would put now eleven-year old Rex to that same test.
I was sitting in the audience, surrounded by friends I had asked to come to support my son and me, and I felt the nerves of life upon me. Would Rex trip up the orchestra if his fingers fumbled? A whole orchestra of kids was counting on him to play flawlessly. And what about them? Would they trip him up with lack of synchronization? His piano had delivered him to a group of peers who were dependent on him and on whom he depended—critical interdependence, so essential for life. Yet, I acknowledged, like so many times before, my son and I were way outside our comfort zones. And so, as the conductor raised his baton and began the orchestral intro of the thirty-six measures Rex had automatically counted, with my special child bouncing up and down on his piano bench while flapping his hands, my prayer was that God would just sit down next to my boy. Hold his hands as he plays . . . and mine as well, while You’re at it.
Rex, get ready! I implored silently, my stomach clutching. As if he’d heard my thoughts, he settled down by the end of the intro and entered perfectly, playing his section with dexterity and tonicity. I finally took a breath. But then the orchestra played a section without the piano, freeing my son’s hands once again. He was battling to keep them near the keys, waiting and ready for his next section, as we had worked on; but the excitement overwhelmed him, and they popped back up, like they were breaking free from societal constraint, and the rapid hand flapping began again.
No, Rex! Your hands need to be ready, sweetheart! How in the world could he land his hands from a mid-air flap in unknown space onto any specific key in a mere instant? He was blind, for goodness’ sake! Here comes your beat, Rex. Your hands, please. I was willing him to hear my thoughts. But his hands kept at it, as if they were playing a game of chicken, up and down, until he had the tiniest fraction of a second to respond. But . . . by the grace of God . . . that was all it took! Reacting with lightning speed, with his arms in full upward extension, his flapping motor jerked to a stop. Then his hands, possessed by the music and knowing exactly where they needed to be, plunged down onto the keys in a free fall! I heard gasps from the audience as he struck the keys with exact precision right on his entry beat. Catastrophe averted, miraculously.
Then h
is hands,
possessed by the music and
knowing exactly where they
needed to be, plunged down
onto the keys in a free fall!
I heard gasps from the
audience as he struck the
keys with exact precision
right on his entry beat.
I relaxed again, but he wasn’t about to let me off lightly. He was determined to test my faith—in him and in God—for the same scene repeated each time the orchestra would take over the score. For the duration of the concerto, he would enter his piano section each time from some new random position in mid-flight. But he didn’t miss a note, and didn’t miss a beat, as though God were grabbing his hands and landing them home in perfect time.
Four beats to a measure. Four–four time. Also known musically as “common time.” Common time! That’s what Mozart had written, but Rex’s time was anything but.
“Uncanny,” came the response from a friend sitting next to me. I also heard “Unbelievable” and “Incredible,” but as I lifted my heart in silent thanks, my own thoughts were, Otherworldly.
As the applause rang out for a stunning performance, I watched a boy in the row in front of us shut off his camcorder. Nathan. He was but a year older than Rex and was a piano prodigy himself, and he aspired to be a concert pianist. Nathan’s mother was sitting next to him, and she turned to ask me how long it had taken Rex to learn the concerto. She shook her head in disbelief when I said, “Three weeks.”
I was suddenly struck with an idea. “Wouldn’t it be great if Rex and Nathan could play something together?”
Nathan turned around in his seat. “That would be fun,” he said. “I played a concerto this year too . . . Beethoven. But it took me three months to learn it.”
Rex Page 23