Music played as all of the Center’s student body marched out with their respective teachers. First came the parade of babies, with their teachers and mothers, the Mommy and Me class where we’d begun, then on up through the years. There was a three-year-old using his cane to guide his class, others holding the hand of a teacher. Then came the graduates, wearing caps and gowns of royal blue. I’d never seen graduation gowns on preschoolers before, but somehow it seemed fitting here, and they all looked so proud in them. Rex’s class came last, and he brought up the rear, with his head bobbing ever so slightly to the beat of the music, the tassel on his cap jiggling as he moved.
Arranged by class, the students sat down on wooden blocks skirting the parent chairs. Each class had prepared a song for the ceremony, and Rex would be singing a solo during his class presentation. But before the kids took the stage, I was to take it myself. Each graduation the Center chose a parent to say a few words, since they knew it was as much our graduation as our kids’. We had all grown in ways we hadn’t thought possible. As I stood on the stage, I looked first at the parents, so full of their own emotions, then at members of the teaching staff, who’d become like family over the years, then finally at the kids themselves. My eyes panned from the babies all the way over to the graduates, but it was my own son I was seeing in each face, the kaleidoscope of his years parading in my mind’s eye. I took a deep breath, pulling myself together, and then I spoke.
“I remember the first day I walked through the doors of the Blind Children’s Center as though it were yesterday. And yet, it was over four and a half years ago, a lifetime ago. Rex’s lifetime.” I looked once more at the babies, so like my son in the beginning, then back at the parents, and continued, “Rex was barely five months old at the time, and the world as I’d known it had been shattered two weeks before in the space of an instant by a doctor’s blunt words: ‘Your son is blind.’ ”
I went on to pour out the emotions of the journey of those four and a half years, and to thank the teachers and staff at the Center for helping us make it through. Holding back my tears, I said, “Thank you for helping me see the child Rex, to hear his laughter and to see how the similarities between him and other kids far outweigh the differences.” Like a family, they had seen me through sorrow and had shared my joy when things started turning around. I looked around the emotional crowd that seemed to be hanging on each word, and I continued, animated. “Thank you for helping Rex fight the monstrous odds he faces each day.”
As I stood there speaking, I knew the future was holding out its hand to us, beckoning. The “real world” outside the safety of the Center, which had once been so scary and chaotic, now seemed to hold promise. And the light of that promise seemed very bright from where we stood today—on the other side of darkness. My voice swelled as I thanked the staff a last time and thanked the other parents. I was just getting ready for my final, very special thank-you, when it suddenly became too much, the feelings too intense. My voice began shaking, my knees buckling. Five years of raw emotion swept over me in a torrent as I fought to keep from breaking down. I paused to steady myself, my eyes sweeping the audience to give me time, and then they came to rest on a little blond graduate. He was flicking the tassel on his cap with the back of his hand. My eyes blurred, seeing those perfectly formed baby hands reaching out for me that first time, almost five years before. Then, with my heart full and my own hand extending out toward him in honor of his being, I spoke my final words. “And thank you to my own little sweetheart, Rex, my hero. I want everyone here to know what I tell you every day: I am so proud of you!”
“I am so proud of you!” Those six words played over and over in my mind as I waited for him to take the stage. Then I saw Rex trooping onto the graduation stage with his three classmates and teacher. Of course, it was no surprise to me that his class would be singing a song from the ’70s, and for this big event it would be Three Dog Night’s “Joy to the World.” And my boy would be singing a solo. The crowd was expectant. Then the foot stomping began, with Rex ready to burst from excitement, as they sang of a world full of girls and boys and fish and joy!
Rex looked like he’d split his seams from the thrill of it all, clapping his hands to the beat. Then as leader of the band, the child they’d thought would never speak, shouted, “One more time” into the mike. One more time! Just to show them that you can, show them it’s real, is that it? No more crisis of doubt, just give ’em all you’ve got, Rex! After another chorus it was his solo, and with his teacher holding the mike up to his mouth, and belted out the lyrics like a rock star:
“If I was the king of the world . . .”
Yeah! This time I was the one ready to split my seams with pride as my son finished his verse and the crowd came to their feet, cheering. Then the class hit the final chorus amidst a jumble of Rex jumping up and down, stomping his foot, and clapping his hands, somehow all at the same time. It was his exclamation point to say, “I really made it!” Now he would be moving forward, beyond these walls. By the looks of it, I believed he’d be clapping and stomping his way full-speed ahead into the world of the sighted!
CHAPTER EIGHT
The Real World
You too must not count too much on your reality as you feel it today,
since like yesterday, it may prove an illusion for you tomorrow.
—Luigi Pirandello
That summer, Rex learned to ride a bike, just like other kids, sort of. It was hard to believe how far he’d come, far enough to be pedaling an adaptive bike. It was actually a three-wheeler with a backrest to aid his posture and Velcro straps to keep his feet from sliding off. But it was shiny and red and had a bell, and he loved it just as much as any other five-year-old loves his first bike. It took some work to get his feet and legs to move the pedals at first, because he did not really understand the motion, but he got it. On the other hand, his balance was surprisingly good, and he became very adept at steering, adjusting the handlebars “just a tad to the right” or “a smidgen to the left,” as I guided him with my voice. If he made more than just that slight adjustment to keep him in a straight line, he’d throw the bike into a sideways tilt and fall over.
His favorite place to ride his bike was near our house down the roadway that skirted the beach. The “beach road”—that’s what we called Latigo Shore Drive. It was a private road with few cars. But it had lots of warped pavement with cracks and odd tilts and slants that made Rex’s rides more harrowing, challenging, and, to my surprise, more fun. He loved all the rockin’ and rollin’ that the aging and weathered road gave him on his little bike. When his legs would tire, he would a rest in the sand, listening to the “small, rippling” waves or the “big, booming” waves, depending on the day. Then it’d be back home for some rockin’ and rollin’ of a different kind. It was time for more piano and his latest musical passion—the Beatles. The sun had barely set on his preschool graduation, and the ’70s music was out in favor of the Fab Four! Even his classical favorites, Mozart and Beethoven, couldn’t compete with such Beatles tunes as “Here Comes the Sun” or “Let It Be.” Not that summer. He was just being a five-year-old. It was a summer of bikes, the beach, and the Beatles. Life was sunny, and he was feelin’ groovy!
LABOR DAY signaled the end of summer, and the back-to-school bell was about to ring in the first day at Rex’s new school. Older kids were rushing to their classrooms, while the younger ones walked more tentatively with their parents. But all were excited to find a new class, meet a new teacher, make new friends. I’d brought Rex in early, not knowing the routines or how long any of it would take, and so we were sitting on the classroom rug waiting. Ten more minutes until the bell was scheduled to ring.
A little girl saw Rex and ran over and plopped down on the floor next to him. She was long, lean, and very pretty, probably a couple of years older. “Can he see?” she asked me. “Is he blind?”
Not what I was expecting. I steadied myself before responding, “Well hello. What’s your name?�
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“Cindy,” she answered.
“Well, Cindy, this is Rex, and no he can’t see in the same way you and I can see. And yes, he is blind, which means he uses his hands or his ears to be his eyes.”
She peered closely into Rex’s face, which was slightly down-cast, obviously trying to get a look at his eyes. She had to lower her own head to see them. “But it looks like he can see.” I assumed she was referring to his open eyes.
It had been innocent enough, a child’s curiosity. Her questions had just caught me off guard; I wasn’t expecting it on day one in Rex’s new classroom. The teacher must have said something to his new classmate, and she would do the same with the other kids in the class. That was normal.
Cindy had obviously been caught by surprise herself on her first day of school. She seemed stricken by the idea of her new classmate being blind. “I didn’t know a kid could be blind,” she said quietly.
As Cindy jumped back up to join two other students, having obviously satisfied her curiosity, I realized I didn’t know how to educate kids about blindness. We were clearly entering a brand-new world. But this was the first day of kindergarten, and it was an exciting new world. It should be exciting! Here we were in the real world outside the walls of the Blind Children’s Center, and although the children in Rex’s classroom all had some kind of special needs, it was in a regular school with “regular” kids. It’s a new miracle just being here, I thought to myself. But still, I couldn’t quite ward off a sense of foreboding.
I HAD begun the search for a new school for Rex six months before his preschool graduation. Given his significant needs, I was sure it would be a formidable task finding a school that would be able to educate him. The whole process made me nervous and worried, but in the parent support groups at the Blind Children’s Center, Miranda had told me the best way to do it was to compile a list of potential school programs and then go visit them. Seeing the classroom would be telling, and hopefully I’d find one to fit.
After some research into what was out there, I came up with three options—three very different types of programs that might be able to educate Rex. I made school visits to each. The first was to another school for the blind, similar to the Blind Children’s Center but for elementary-age kids. Like the Center, it had the advantage of a highly qualified staff to work with the students. I definitely liked the idea of specialists working with Rex, but it was very far from our home, which would mean more years of commuting. Not at all what I wanted. As I was walking to visit the kindergarten facility, I passed a classroom of older students. The line of white canes the students had hung next to their classroom door suddenly spoke to me of isolation. This school wasn’t in his community, and it would keep him segregated from his sighted peers who made up the rest of the world. This school couldn’t allow him to mix or teach him how to socialize in a real-world situation, which was what he would need when he left preschool.
The second option was another specialized school, but this one worked with children who had various disabilities, a generic mix of children with differing mental and physical disabilities, such as cerebral palsy, mental retardation, or autism. Autism! Even though it had never been officially added to his educational diagnosis, which stood as “multiply disabled,” Rex exhibited a fair number of autistic behaviors. There were all his repetitive body movements, his echolalia and scripted speech patterns, and, of course, his “raw” sensory system which created hypersensitivity in his hands and ears. So in spite of the fact that he could socially connect to people in a way many others with autism could not, I couldn’t deny he was “on the autistic spectrum,” as they put it. Autism was a part of those “multiple disabilities,” and a pretty substantial part. I had finally come to accept it. Having been in denial for three years, I had finally come to see the truth in his teacher’s frightening assessment of then-eighteen- month-old Rex—“I’m afraid Rex is autistic.” I wasn’t ready to hear that back then; it was too much, too soon. I simply couldn’t handle it. But now I accepted the term “autistic,” having grown into it because it was part and parcel of the child I loved so much. And now I was determined to use it only as a source of understanding, a springboard to work from, not in any way as a label that would limit my son.
This school had been suggested to me as a way to address Rex’s other non-blindness issues in a singular setting, meaning onsite access to speech, occupational, and physical therapists. In a word, this school was supposed to address the autism aspect of my son. I knew that Rex would benefit from the expertise of staff trained to work with all sorts of mental and physical issues, in addition to blindness, so I made the visit. But when I got there and took one look at the massive concrete structure, I felt my head spinning. It looked more like an institution than an elementary school, with its wide hallways filled with wheelchairs and children wearing protective helmets. Did that mean children were here who had aggressive behaviors in addition to everything else? I wanted to flee as fast as I could, but I felt unsteady on my feet. Staggering back to the car, I slumped into the seat, nauseated and scared. It had been a very big strike two, with just a month to go until Rex’s graduation from the Blind Children’s Center.
Then I made my third visit. Walking into a garden perched atop a Malibu hillside, with rows of carefully tended flowers and greenery, I stared out at a breathtaking sweep of ocean down below. Had I taken a wrong turn somewhere? Gotten the address wrong? My feet were floating more than walking; I felt as if I’d arrived in some sort of paradise. But this was the right place. On this scenic road overlooking the vast Pacific, it was the school I was looking for, located only five miles up the coast from our home. From the moment I set foot on the campus, I held my breath, wanting so much for this to be the place, and not a mirage. Could a place this beautiful really have a program suitable for Rex? It was a public school just a stone’s throw from our house where our neighbors’ kids went. Could it possibly be the one?
I’d learned everything I knew about the education of the disabled from parent support groups at the Blind Children’s Center. They taught us the intricacies of the system in order to empower us to help our children. We the parents would need to protect our kids once they left the protective walls of the Center. We would need to be their advocates. The Center had taught me about the big shift in education since 1975, when the groundbreaking legislation whose acronym is IDEA became law. IDEA stands for Individuals with Disabilities Educational Act, and it assured children with disabilities a “free and appropriate” education in the “least restrictive environment” possible. The statute states that the public school system will pay to provide all support necessary for each child’s needs. The “least restrictive environment” clause focused on the importance of socialization for children with disabilities. Simply put, the law was intended to get the disabled out of institutions or specialized schools, like the schools for the blind, and integrate them into typical classrooms in regular schools to the greatest degree possible. Ideally, it would help children with disabilities learn to function in a real-life setting with nondisabled peers in order to help prepare them for the real world. The goal at the Blind Children’s Center was to help our blind kids be normal, or at least fit in as best they can—and that’s what I dreamed of for my son.
Prior to IDEA, there had not been any educational equality for the disabled, and a child like Rex might not have received an education at all. Or if he were able to attain anything, it would have been in an institutionalized setting; perhaps similar to the school I’d just visited, which was equipped to address his heavy-duty issues. But the law was clear—discrimination on the basis of disability would not be tolerated, and no child would be neglected in government-funded facilities because of a disability, no matter how severe. The burden was on the schools to meet the needs of our children through the provision of an appropriate program and extra supports necessary for each child to function within his school placement. The law was obviously a big social victory for the disabled and
for their parents. We the parents were to be included in the whole educational process, from finding a program to helping set priorities and goals for our children. The law itself empowered the parents by making us important members of what would become an educational team. The teacher wouldn’t be a lone gun but would be the head of a whole team, where collaboration would be the key to success. Information and expertise would be shared to support the child. Since I had long been aware that it took not only a village to raise Rex but a highly skilled village, I loved the idea of teamwork among specialists. The law was behind me, it was behind Rex, and so maybe . . . just maybe . . .
I’d stopped in the front office and gotten directions to my destination, Room 30. As I walked down the corridor to the classroom, I passed the playground. Kids were rushing to form lines. As I watched a little boy, maybe a first grader, race back up to the top of a winding slide for one last go, just beating his teacher’s whistle, I was praying for nothing short of another miracle. My heart was aching for it. I wanted Rex to come to this school, make friends with these kids, be a part of the real world.
I stopped for a moment to watch the kids as they waited in their lines, and I was approached by a woman whose smile preceded her. I felt as though she fit in this place of sunshine and flowers, where the corridors were lined with such neat rose gardens. In fact, she looked to be someone who must love flowers and dogs and children—and who was loved back. Extending her hand, she introduced herself. “I’m Pat Cairns, the principal.”
Well I’d been right; she did fit in this school like a hand and glove. “Cathleen Lewis,” I said in return, shaking her hand. “I’ve come to visit your specialed program for my son Rex.” And then, feeling the need to explain, I continued. “He’s blind, and . . .” I paused for a second and then voiced what I hoped wouldn’t exclude him from her school, “and multidisabled.”
Rex Page 12
