I felt the color rising to my cheeks, knowing how much my son had to contend with on a daily basis. I thanked God that behavior wasn’t one of them. “You keep saying that—behavior, behavior plan—but I can’t for the life of me figure out what you’re referring to.”
“Refusal to do simple tasks,” she said matter-of-factly. “You saw it yourself in the classroom. We all know Rex can walk to the sink. But that day, he refused—and a simple situation became complicated.”
“Refused?” I blinked in amazement, feeling a disconnect between her words and what I knew to be reality. “Rex wasn’t refusing to go to the sink that day. He was unable to. There’s a big difference.”
“Unable to?” she said, incredulous. “All he had to do was take a couple of steps—”
“A couple of steps that he couldn’t take!” I blurted out as the tension in the room escalated. How could it be that they just didn’t understand the complexity of what Rex was dealing with? That they thought he was being lazy or contrary? That they could apply some quick-fix behavior plan to something neurological in origin? Reliving that traumatic scene at the sink, I had no choice but to walk them through it. I took a moment, willing myself to convert anger and frustration into an emotional plea to help my son. “I don’t think you truly understand what Rex goes through. My son was trying with everything he had to get to that sink so he could go outside and be with his classmates. But his senses became overloaded. First he gets pulled by one kid—then bumped by another—turned this way and that. When a blind child can’t get his bearings, he experiences spatial chaos. Then add to that the faucet turning off and on, grating on his nerves, with kids rushing around him and all their chatter setting off his autistic sensitivities, and he was completely disoriented.” His teacher seemed noncommittal. “It was as if his brain just couldn’t take it anymore and short-circuited. I looked around the room, hoping beyond hope that some comprehension might dawn. Then, pleading, “Couldn’t you see that? Don’t you know what blindness together with autism can do to a child?”
Mrs. Spader just stared back, not giving an inch. Either she didn’t believe me or she didn’t want to believe me, because that would mean her student was a far more complex puzzle than she had realized. “I think I know Rex pretty well. I’ve had him every day in my class for some time now.”
Why did she think I was her enemy? Weren’t we on the same side—working for Rex? I caught her testy tone but refused to match it, continuing my emotional plea instead. “And I think there’s a lot about my son that none of us really understands. He has a fragile and variable neurological system that doesn’t produce the same thing day to day. I know how hard that is to work with. Believe me, I know.” I thought back to so many challenges I’d faced day in and day out to address that very issue. “But that’s our job,” I said, throwing myself into the team basket, desperate to be heard. “Yours and mine, to work from Rex outward, not from what we hope he is or what he would be in a perfect world.”
I looked at each face in turn, and everyone was tuned into every word now. “And I believe there are some critical parts of Rex’s education that are failing him. It’s obvious that his needs are enormous, so I think it’s crucial that the areas the team targets are relevant for his life and not just wasting his time—and the time of the people who work with him,” I said, looking first at Karen then at each member of the team in turn, trying to get the idea of collaboration and teamwork across.
Still sure of herself and her decisions, his teacher said, “Believe me, we are targeting areas that are very relevant to Rex’s life, such as making him more independent.”
“And you’ve achieved some good results on that, I agree,” I replied, acknowledging the point. “But let’s talk about an area where he’s not getting results. Did you know that only 10 percent of the blind population reads Braille?” I asked, having just learned the shocking statistic myself. Mrs. Spader looked as surprised as I had been by the statistic, but she remained silent. “So, why, after two years of failing to discriminate even between two Braille letters, is Rex still being force-fed Braille? He can write it. But he can’t read back a word of what he has written. So what’s the point? I’d be bored to death too. And I probably would have just as hard a time staying on task if I had to spend hours at a desk making bumps on paper that had no meaning for me.” Whoops! I didn’t mean to say “bored to death.” That was a bit strong. But the subject is just too emotional for me. In spite of my emotions, I managed to level my voice and in a follow-the-logic kind of way said, “So isn’t that also a waste of Karen’s time . . . and the district’s?”
“So you want to give up on Rex being literate?” his teacher asked, a bit huffy.
“Of course not,” I said. “But obviously, with a 10 percent statistic for Braille, it’s not the only option.” I had done my due diligence, some eye-opening due diligence, and had come to this meeting prepared—not just with concerns but with solutions. After doing some research, it seemed hard to believe that this educational “team” had never discussed alternative means for Rex, a blind and very tactile-defensive child, to achieve the important goal of attaining maximum literacy. It hadn’t taken much on my part to discover the pervasive use of computers and voice actualization for that very purpose. Given Rex’s impressive auditory skills, it seemed a no-brainer, but clearly this team needed to be further educated in literacy options for the visually impaired. “Rex is a good speller and does well in phonics, so let him use those strengths in a way that gets him positive reinforcement. I’m talking about computers. I’m sure his piano keyboard skills would translate to an awareness of a computer keyboard.”
Then I walked them through my vision. “He will learn to type, and with the screen-reading technology available for the blind, the computer will read back his finished product. And he’ll love it!” I said, absolutely convinced. I could even picture Rex getting all excited by a somewhat-robotic computer reading back his work, wanting to type faster just to get that “fun voice.” Then, staring his teacher straight in the eye, I added what I hoped would be the clincher. “And that will give him the motivation to ‘stay on task.’” I emphasized the words that seemed to be the class mantra, a mantra they claimed was impossible for my son.
There was silence in the room for a moment, while the team digested the import of my words. It was clear that a computer for Rex was a completely novel idea to this team, although as a teacher of the visually impaired, Karen certainly knew the option existed. Was it another budgeting issue that had made her keep silent? I’d heard that school districts advised teachers not to inform parents about potentially costly programs or technology options for their children. Meaning we parents needed to find out for ourselves what’s out there for our kids. Mrs. Spader looked at the vision specialist. “Do you think Rex will ever learn to read Braille?”
Karen looked uncomfortable with the attention drawn to her. “He might,” she said, mumbling, clearly not wanting to commit.
“Might?” I almost screamed, having run out of patience on the issue. “And you’ve been working with him three times a week for two years, and he still can’t distinguish an a from an l? And then when he finishes the effort, he’s so drained the rest of his day is a struggle. Is that the ‘appropriate’ education the law guarantees Rex will have?” The words had just come out, but they didn’t say enough. So, with clenched fists and fiercely maternal determination, I let out what I was really thinking. “You’re not just wasting his time, you’re killing him in the process!”
His aide was nodding, looking at me, encouraging me to stay the course. She didn’t dare add her input, but she was the one who had to battle with an exhausted boy all the time, so I imagine she hoped I wouldn’t back down. At the same time, comprehension appeared to be gradually dawning on Mrs. Spader, both in terms of my own determination and in terms of an alternative literacy option to Braille. And, interestingly, she almost looked relieved, as if she’d found an out. She turned to Karen again, avoi
ding any acknowledgement that she’d been unaware the option even existed. “Can we get what we need for Rex—computer, software?”
“I’ll look into it,” she said, in what I took to be a partial affirmation.
“I will need to be informed on your progress in getting it for Rex,” I said, with what was meant to leave no doubt as to my determination to follow through.
“You will be,” said Mrs. Spader as though she wanted this meeting to be over. She wasn’t comfortable with a parent standing up and challenging her. She was used to running the show. But I wasn’t comfortable with a teacher’s ego when my son’s well-being was at stake. So today, whether she liked it or not, I was the one running the show.
“Okay. Then we can talk about the other serious concern I have. And that’s Rex’s socialization in the class and in the school. He needs to be working and playing with the other kids, not off in corners or working with adults all the time. That’s why he’s here. That’s why I brought in the keyboard. It wasn’t meant to be a pacifier. It was supposed to be a creative bridge to his classmates. But you only let him play with his headphones on—so he won’t bother anyone—instead of using it to foster interaction with his peers. Do you realize what an amazing gift my son has? I’ve even been told recently that he’s a musical savant—a genius. But you use his gift in a way that further isolates him. My son is here because I want to do whatever I can to integrate him into the world. But if your view of him is so . . . distorted . . . you’ve already doomed him to failure.”
I hadn’t planned on making speeches today, but I suddenly realized what an opportunity this forum had given me. This was supposed to be “special” education, and I had to believe that every person in this room had chosen the profession in order to help kids with unique needs. I was crying for them to shelve egos and get back to the heart of their profession. That was the only way for my son to succeed. I wanted to believe it could happen, to believe it wasn’t their intent that was distorted, just their perception. For me, that meant their ability not just to think outside of the box, but in Rex’s case, to get rid of the box altogether.
I spoke calmly but with quiet determination. “There’s no denying my son has some challenging weaknesses. But he also has some amazing strengths. Surely there is a way, between us, to take those strengths and use them creatively to make him part of the world. To help him overcome his weaknesses. Isn’t that the point of education? For all children?”
CHAPTER TWELVE
Aftermath
There will always be challenges, obstacles and
less than perfect conditions. So what. Get started now.
—Mark Victor Hansen, author
Everyone left the I.E.P. room quickly—hurrying back to duties, perhaps already mentally trying to reschedule missed service time with other students—but not me. I walked out slowly. Did their hurried departure mean they had already shifted gears, pushing plans for Rex somewhere into the back of their minds . . . and priority lists? Were they embarrassed? Had I gone too far? The questions were suddenly too many, the doubts overwhelming. Crossing the parking lot back to the car, gone was the stride of confidence I’d had going into the meeting. Now my steps were careful, poised, so my legs wouldn’t go spaghetti like Rex’s used to. My arms were limp, hanging at my side like deadweights, and my body felt heavy, drained. I’d given it all I had and could only pray my voice had been heard.
Leaving that room, the truth hit me square in the face, and it was ominous—the law could provide services for a child on paper, but it couldn’t guarantee the quality of those services. That meant the law was only as effective as the people carrying it out—the teachers, the specialists, and the way they collaborated and shared ideas. Effective teamwork was a must with a child as complex as Rex, and as such, appeared to be the joker in his educational deck of cards. Would this group truly get behind my son and use his gifts to help him gain access not only to a more suitable curriculum but to his peers? Or would they be too overextended to give the necessary time and creative effort it might take to do that? In spite of my emotional pitch, sadly I felt the jury was still out. Reaching my car, I placed my hands on the hood to brace myself as my shoulders slumped forward, my head drooping. I was sapped, snapped, worn.
But then, cutting in on my thoughts, I became aware of some footsteps behind me, rushing to catch up. I turned to see the principal. What now? I thought. But she was smiling.
“Cathleen,” she said, a bit out of breath. “I’m glad I caught you. I just had to say a word to Mrs. Spader on her way back to class, but I wanted to let you know how much we love Rex and how committed we are to trying to get it right for him.”
“Thank you,” I said, allowing some of the tenseness in my shoulders to seep away. “I really appreciate that.” Suddenly I felt like a child needing reassurance.
Pat gave it to me in the form of a big maternal hug that made all the difference in the world and said, “What I appreciate is parents who stand behind their children.” Pointing back to the door, she went on. “And I appreciated your words in there. We do get busy, and there’s a lot about the system that’s far from perfect, but I hope you believe we want to get it right. We want to help Rex succeed. And I believe we can do it,” she said with determination in her voice. And then she added just the guarantee I was hoping for: “If we work together.”
THE PRINCIPAL and I had barely finished the expression of belief in Rex’s future, when, once again, he was the one who began to stir up his own kettle of hope.
Two of the biggest questions any of us had about Rex’s cognitive, emotional development were soon to be answered. Would he ever be able to move past concrete experience into abstract reasoning? To date, he couldn’t. And would he ever understand and express complex emotions, or would autism keep them locked up? Like his communication, which tended to be rote and scripted, his understanding of the world was limited to the very concrete. With the flagrant exception of music, where improvisation was his preferred genre and creativity the name of the game, everything else was very literal in his mind, and he showed no evidence of imagination. Whereas Rex’s musical world was a kaleidoscope of myriad colors and shapes and forms, the rest of his world was pretty much black and white. Or was it?
Shortly after the I.E.P. meeting, Rex came home from school with a library book in his backpack. Since he went to the school library once a week, I wasn’t surprised by the presence of a book, just the particular subject of the one he’d chosen: Energy Makes Things Happen. Energy! Now there was an abstract concept.
Tucking Rex in bed that evening, I knew he would ask for his library book. He didn’t disappoint me, and as soon as he had the covers snuggly up to his neck, he said, “I want to read Energy Makes Things Happen.”
Heeding my son’s call for a bedtime story, I opened the book. His face was calm and attentive, like it always was when he listened to stories. However, I wasn’t sure exactly what he got out of all that intense listening, since he struggled to answer even basic comprehension questions linked to a story passage. Tonight I would be reading him a science selection, even more complex than usual.
“‘Did you know that energy comes from the food you eat? From the sun and wind?’” The language in the book was simple, but the concept was not. “‘You need energy to play baseball, or to run, or . . .’” hoping to stretch my son’s comprehension, “to play the piano. ‘A car gets energy from fuel.’ Rex, you get your energy from eating oatmeal in the morning.” The book went on to discuss the different forms taken by energy and how it is transferred among people, machines, and nature. I added examples that Rex could relate to. “You need energy to run. And when you run, you use up your energy, so you’re tired and you’re breathing hard, huffing and puffing, and you say, ‘Mommy, I need to stop running. I need to rest to get more energy so I can run some more.’ ” A few more examples, to try to drive home the concept, and I summed up. “So Rex, like the title says, Energy Makes Things Happen. Do you understand?”
Then came morning. My seven-year-old boy got out of bed a little groggy, and as I pulled his pants and shirt from his dresser, he walked into the bathroom, as he did every morning. But then I heard him calling out to me, all tiredness suddenly gone from his voice. “Mommy, Mommy!”
“What is it, sweetie?” I asked, already heading for the bathroom, fearing a faulty aim and a soggy floor.
Just as I reached the door to see my bare-bottomed boy standing proudly in front of the toilet and bubbling with excitement, he announced, “Look, Mommy, I’m using my energy to pee!”
I’m using my energy to pee!!! Yes! And quite an energetic arc it was, perfectly aimed, descending straight down into the toilet bowl!
He got such a kick out of himself when he knew he got things right. And I got such a kick out of him because he was Rex, the one and only original, doing things his way and in his time. He was beautifully guileless, and I wondered if he would always have that pure, childlike spirit. I hoped so, because it seemed to me that it was in the depths of that innocence that God had chosen to infuse His grace. Sometimes it was cute, just like this bathroom scene—a snapshot, as if He was winking at me through my son’s blind eyes, letting me know He was there. And sometimes it hit me straight in the heart.
IT WAS a pristine Saturday morning, and Rex and I were walking along our sandy beach, hand in hand. The tide was out, but instead of focusing on the tide pools and all the sea life the receding waters had left strewn about, I was giving all my attention to the little boy at my side. His personality was pushing through more and more. Ever since the day he had shown he understood what energy was, we’d been using it. In fact, it had become one of his favorite words that could be thrown into a variety of situations: “Look, Mommy, I’m playing the piano with good energy!” Followed by a big smile and a lively beat. Or, “We’re going to the gas station so our car has energy to go to school. Vroom! Vroom!”
Rex Page 18
