Rex

by Cathleen Lewis

  I searched her face for a reaction, but there was none. She smiled again and said, “They told me in the office you were here, Mrs. Lewis, and I think you’ll find we have a lot to offer Rex.” She used his name with such loving ease. She also caught my look of longing as I glanced one more time at the kids on the playground. “And they say, here at Cabrillo, we have the nicest students in Malibu because our kids are used to being around children with disabilities.”

  As I listened to her, it was obvious this woman loved children of all abilities. It was in her voice and on her face, like she wanted this to work out for Rex as much as I did. She told me that all the children in Malibu with disabilities were grouped in this school, and that there were two different classrooms on the campus solely devoted to special ed, along with a lot of other services they would be able to offer Rex. “Room 30, where you’re headed, is a special day class with intensive services.”

  “What, exactly, does that mean?” I asked hopefully.

  “It means that all the students need supports such as speech or occupational therapy, and maybe physical therapy, along with academic help. Of course, the district would also provide your son with vision specialists, who would come here to work with him and consult with his teacher as well.”

  It all sounded great, with therapists to address feeding and use-of-hands issues as well as communication. Plus, Rex would also have the vision support as he had at the Blind Children’s Center. That meant Rex would receive orientation and mobility training to help him learn spatial concepts and how to use a cane to navigate his way around his class and campus. It also meant he would have a teacher to teach Braille and skills such as tactile discrimination. Mrs. Cairns went on to explain that Rex’s class would be made up of eight to ten kids of various disabilities and ages, ranging from kindergarten to fifth grade. They needed to group different ages together in order to get enough kids to justify the program, but each student would have an individualized curriculum.

  Rex’s eyes were frozen, transfixed on me, as though he was just waiting for an explanation . . . but how do you explain invasive brain surgery to an 8-week-old baby?

  Here we were at home, right after learning Rex was blind. But “at home,” and the safe refuge that implied suddenly seemed to have no meaning. How were we to go on in a world that was suddenly so unsafe?

  “It’s my party and I can cry if I want to.” Rex turning one at the Blind Childrens Center.

  We came here to his favorite park almost every day to swing, hopeful he’d take his first step. “You can do it Rex! Just lift your leg and put it forward.” Rex, however, remained obstinate in his refusal to budge or be budged without his legs going spaghetti.

  Why do they keep tricking me into putting my hands in this stuff ? This 2-year old does not like finger-painting!

  Saving sensitive hands for the piano? Two-year old Rex testing the limits of the Blind Childrens Center piano, with Barney the Bear standing guard.

  “No more spaghetti legs for me, thank you very much”! Three and 1/2 year-old Rex walking proud along his home beach.

  Above: Rex has always loved the water, fearless in the pool with mom and inner tube

  Below: “Just when I’ve got this walking thing down, leave it to Mom to put me on wheels”!

  Above: Rex gets a winner’s hug from mom, after completing the 1 K walk/run at The Long Beach Marathon for team Blind Childrens Center.

  Right: A moment unto itself at home for Mom and 4-year old Rex. With love and laughter, all the rest doesn’t exist.

  Above: Rex demonstrating his “difficulty crossing midline” has no place at the piano as he executes effortless crossovers, and floats up into that world where disability doesn’t exist.

  Below: Proud Blind Childrens Center preschool graduate Rex, ready to take on the sighted world.

  Above: To Rex, my hero. I want everyone here to know what I tell you every day. I am so proud of you!”

  Below: “We did it Rex”! Rex with Mom and Uncle Al proudly showing off his preschool graduation diploma.

  Below left: Rex taking the lead! He discovered newfound freedom now that his hands will actually hold a cane. Leaving playground swings behind, he is proud to change roles with his faithful friend and aide KD, who is used to guiding Rex around.

  Below middle: Leaving hard school days behind, Rex takes refuge in the world where he is at ease. Like a great artist standing before his palette. “He sees all the colors, each subtlety, instantly, while the rest of us see only black and white.”

  Below right: “Feelin’ Groovy! A new big boy bike, the beach, and Rex barreling down the boardwalk to the beat of life!

  Above: Rex not only lives piano, but dreams it as well, and at times turns it into his bed. “Mom, I know it’s past my bedtime, but I think if I just rest for a second I can play my new Beethoven Sonata one more time!”

  Below: Mother and son—an unbreakable bond of love. The one absolute.

  Above left: Rex takes to the slopes at Park City, Utah. “I think I’ve got the hang of it. Now can I bomb down the mountain”?

  Above right: Now this is living! Rex bombs down the ski slope, lands in a heap, and begs for more—here with mom and National Ability Center Ski Instructor Don.

  Left: Rex gets more skiing, and even puts sunglasses on for the photo op (before asking mom to take them back off his sensitive face)

  After playing his piano for a Young Presidents Organization (YPO) Regional Conference in Arizona, Rex goes off-site and shows that the sky’s the limit! Not only does he get to touch the clouds in his hot air balloon, but he has fun with Mom making a bouncy desert landing as other YPO Conference-goers touch down behind.

  Above: Rex begins to travel—when in Paris . .

  Below: In Paris . . .Rex does a happy Louvre pose with Mom, but will forego the masterpieces inside in favor of a jazz afternoon in the cross town Luxembourg gardens.

  Above: Tokyo performance by night, visiting the city by day. Rex is intrigued by the sounds of the busy marketplace Asakusa.

  Below: Taking it to the limit one more time! Rex is honored by Austin YPOs (Young President’s Organization) to play on the famous Austin City Limits stage.

  Rex sharing a laugh with older British counterpart Derek during filming break for Discovery Health documentary, “Musical Savants.”

  Above right: Rex taking on a sophisticated air as his music branches out into a new genre . . . jazz.

  Above left: Rex’s Time.

  I hesitated, almost not daring to hope for even more. “But will he be able to interact with those kids,” I said, pointing out to the playground.

  This woman was probably a mother herself, and she knew exactly what I was feeling. “Of course he will,” she said, placing her hand on my arm in a reassuring gesture. “At recess, lunch, and then he’ll most likely ‘mainstream’ for part of his day.” She used the word I knew that meant Rex would spend part of his day in a regular classroom.

  It was the perfect situation, a small classroom to provide him with the quiet environment his sensory system still required, while gradually allowing him to acclimate to more noise and “real life.” Finally, in addition to all the other supports, if the team felt he needed it, a one-on-one aide would be hired to assist him throughout the day.

  This caring principal walked me to Room 30, and as she delivered me to the teacher, her parting smile told me God had hit this one out of the ballpark!

  THE TEN minutes were up, and the first bell rang in the day, but it wasn’t easy to just leave—leave Rex. Did other parents have an easier time? I couldn’t believe any parents of a kindergartner would feel any differently, even if their child didn’t have special needs. It was more than normal for me to suffer the separation, with all of Rex’s needs. Things had been different in preschool, where I could always go back and sneak a peek into his classroom to see how things were going. But this was a public school, and that meant parents weren’t allowed to just drop in. I was really handing Rex over to
his teacher, and it was very hard.

  I’d met his teacher, Mrs. Spader, on three occasions already: during that first school visit, during the team meeting to plan Rex’s goals for the year, and when she had made a home visit before the school year had begun. She had wanted to see Rex in his home environment, and I considered the visit a wonderful gesture on her part, promising a teacher who cared. She had watched in amazement as he played his piano, and when I asked if it would be possible to bring in a keyboard for him to have in the classroom, she said it would be great. All systems were go, and she was excited with the prospect of having a blind child in her classroom. A first!

  I gave Rex a last hug, to reassure myself as much as him, then I extended his hand to his teacher. As I steadied myself to go, Mrs. Spader gave me a smile, a reassuring nod, and said, “He’ll be just fine.” Then she led him to a semicircle of chairs where the class would begin their day, while I backed up to the door, needing to see him up to the very last second before the door closed behind me.

  Trusting that he would be okay was all part of the process of being a parent. I knew that. I also knew that all parents go through it to some degree, but with Rex’s intense needs the whole thing was multiplied exponentially. However, during those first weeks I allowed myself to trust the system because I was trusting in God to watch over my little boy.

  Rex became entrenched with his schedule, with all the specialists who came to teach him so many needed skills, and with his group classroom activities. He had been provided with a one-on-one aide named Khadevis, or KD for short, who helped him during the day. I had Rex’s schedule written down and knew his days were full, but I found myself ignorant of what he was actually doing during all the different services and activities. Rex couldn’t tell me, because his conversational skills were still extremely limited. When I tried to get specifics from Mrs. Spader at the end of each school day, she always seemed to be in a hurry. Granted, she was still in class with the older kids when Rex’s shorter kindergarten day ended, but her manner also said, “You need to trust me to do my job.” This wasn’t the collaboration I had been hoping for, but I hung on to the small bits I did get. From time to time, she would tell me about some skill she was working on with him, such as learning the days of the week, but generally a “He’s doing fine” comment was all I would get before she’d rush back into the classroom. I tried to tell myself that not being able to share my child’s school day was normal, but then I would be reminded that other talkative little kindergartners could tell their parents the things Rex couldn’t. What they did in school, what they liked or disliked, giving their parents at least the gist of the experience.

  So one day, I pushed the matter with Mrs. Spader as she led my son out at pick-up time. “I would really like to know what skills you’re working on with Rex, so I can reinforce them at home.” Hadn’t that been the philosophy behind education for the blind? Skills had to be reinforced around the clock.

  Smiling at me, as though indulging a needy parent, she gave in. “We’re working on a lot of independence skills with Rex. I’m sure you know how difficult that is for Rex, things like washing his own hands, hanging up his own backpack.”

  “Yes, of course I know. So how’s he doing?”

  She shrugged. “It’s slow,” she said. “But on the other hand, he has a great memory for numbers and rote sequences. He always knows the day of the week and the date. He’s doing very well during Calendar. And in P.E. today, he really surprised us. Coach Gary had begun leading warm-ups by counting in different foreign languages. He did it for the first time yesterday, and today Rex was able to count along with him!”

  Thinking he had probably counted along in Spanish, I looked at Rex and asked, “What did you do in P.E. today, sweetie?”

  “I counted to ten in P.E. today,” he answered. He went on to say, “And I counted to ten in German in P.E. today.” Then Rex proceeded to list all the languages he had counted in: French, Spanish, Japanese, Hawaiian, Farsi, Russian, and Biepenese (I figured that might be Vietnamese). With the look of a boy with a big secret busting to get out, he said, “I want to count to ten in German.”

  Then as he began his counting, Mrs. Spader extended her hand toward Rex as if to say, “See for yourself, he’s doing fine,” and then waved to say, “Gotta go. Kids are waiting.” The classroom door banged shut. I was dismissed. We headed to our car with Rex counting first in one language, then another, until he had exhausted his list of eight foreign languages! Order, tonal sequences, that’s what he excelled in, but what about all the rest? What about speech? Communication with other kids? His involvement in the class?

  Mrs. Spader had given me something to chew on, to keep me in a holding pattern, even though I had a growing sense I wasn’t being included in his education at all. I let it go until a morning in late October. I had just gotten Rex out of bed, and he greeted the day in the usual way, with his calendar spiel. He said exactly the same thing every morning, just changing the day and the date. “It’s a brand-new day, Mommy. What day is today?” Without taking a breath, he answered himself. “Today is Friday, and the date is October 19.”

  “That’s right, Rex. It’s Friday, and it’s a brand-new and beautiful day,” I said, adding some information. “So what’s the weather like today?”

  “It’s sunny, Mommy! A beautiful day is a sunny day.”

  “Yes, it is. That’s exactly what beautiful means here.” I got his shirt ready for him. “Let’s put your shirt on, sweetie. Left hand, right hand—over your head and . . .”

  “Jump up and down!” Rex had the shirt on and was jumping up and down, loving the dressing game I’d made up to help him sequence his movements.

  I continued. “Left sock, right sock, shoes on . . .”

  “To beat the clock!” He was beaming and ready for the day.

  “All dressed for your last school day of the week. And when I pick you up, before we come home, you have a birthday party to go to. Arthur’s birthday. Won’t that be fun?”

  “That will be very fun!” he answered.

  In fact, it was Arthur’s mother who had invited us. They were our neighbors in our condo complex, and Arthur was in first grade at Rex’s school. So she’d asked us to join some of Arthur’s first-grade friends for a small celebration at the school.

  I accepted gratefully, wanting so much for Rex to be included with other kids. That was the whole point of his going to the school he’s in. Rex never talked about any kids at the school unless I asked him about a specific child. He could recite the names of all his classmates when asked, almost like they were numbers and not kids. Like the rest of his school day, I wanted to know. “Rex, can you tell me who your friends are at school?”

  He was still revved up from the dressing game, but he didn’t respond. I made the question more specific. “Rex, can you give me the name of one friend you have at school?”

  “KD is your friend,” he said, confusing pronouns as usual.

  “Yes, of course KD is your friend, sweetie, but he’s your aide. What kids are your friends? Can you give me the name of one kid who is your friend?” Rex grew silent, with a perplexed look on his face. “Who do you play with at recess?” I asked, trying to help him.

  “You play with KD at recess,” he said, again exchanging “you” for “I.” The look on his face said he was hoping this was the right answer, the one his mother was looking for. Even though I felt my heart aching, I couldn’t let it go.

  “Okay, sweetheart, that’s fine. I’m sure KD helps you swing and play with the other kids. So what kids do you have lunch with?” When he didn’t answer, I changed the question, making it unmistakably specific. “Who do you sit next to at lunch?” The tone of my voice had a slight tinge of frustration, in spite of myself.

  “KD,” he said quietly, sensing his mother wasn’t happy about something.

  Rex was so sensitive to my tone of voice; I didn’t want him to feel anything other than excitement for his school day. As I drove him to sc
hool, I told him how much fun I knew school was going to be, all capped off by a birthday party! But the instant I handed him over to KD, I acknowledged my own thoughts, my concern about his reticence (or was it inability?) to talk about the kids in his school. I would have asked KD myself that morning, but I had been informed about the district policy that aides were not allowed to discuss their students with the parents. Only the teacher could do that. All of a sudden, that policy seemed absurd, even troubling, and I decided it was time I took a look myself at what was going on at school. Today was Friday, which was a minimum day, meaning the students would be dismissed right after lunch and the final recess. I would go in a little early and observe. Although I couldn’t go into the classroom without a scheduled observation, no one could keep me from observing lunch and playground activities, visible as they were from the parking lot at the back of the school where the disabled parking spaces and school buses were located.

  So there I was, parked and watching, waiting for the kids to come out for lunch. I felt excited and a little covert, but also anxious. Then I saw the door to Room 30 burst open, and just as a third grader named Justin was about to run off, a classroom aide slowed his movement. There were the other students and classroom aides, and they were all moving down the corridor toward the lunch area. But where was Rex? And where was KD? The other students had reached the picnic table, and Rex still hadn’t appeared. Just as I was about to go marching down to his classroom to find him, I saw the red ball on the end of his new white cane appear in the doorway, assuring the opening was obstacle-free. I had a proud catch in my throat as I watched him grip the cane his sensitive hands had refused to hold for so long. He stopped in the doorway, and KD handed him his baseball cap to protect his sensitive eyes. I watched as Rex put it on crooked with the backside smashed underneath. KD took the hat off and handed it to him again. He made another attempt, and this was better, a bit crooked but not scrunched up. KD helped him straighten it and gave him a high five. It made me smile, and Rex was smiling too, as his aide walked with him to the picnic table. It was obvious his aide knew well how to work with him, and they did look like pals walking along that corridor, just like Rex had said.