Rex’s hands were flapping excitedly, knowing he was right again. The teacher looked across at him, her exasperation rising. Karen leaned forward to my son and sighed, as if to say ‘same old, same old,’ and said, “Rex, Mrs. Spader just asked you to do your own work and let your classmates do theirs. You have your own sled and bed right here.” She placed a page of Braille words on the table next to the Braillewriter and put Rex’s hands on the page. My son’s hand shot back up. And why not? He couldn’t read Braille. He’d been trying for two years now and couldn’t even distinguish one letter from another, let alone read words. His hands were still too hypersensitive.
“I don’t want to touch the bumps,” he said, getting agitated. And yet that was my son’s sorry task, touching bumps that had no meaning; all the while he wanted to be in the group spelling and doing phonics out loud. It was as plain as day . . . painfully plain. And that’s what he was good at—spelling and decoding with his voice and ears, not his hands. I shifted uncomfortably in my chair, living my son’s frustration, as Karen once more guided his hand onto the Braille page. Rex sat there listlessly, like a child condemned to prison, bored and apathetic. He actually almost toppled out of his chair from pure apathy. Just when I thought I’d seen enough, a girl student stepped over to the electric pencil sharpener near the door. I wanted to jump up and scream, “No!” at her as she stuck her pencil in. Terrified, I looked over at Rex as the high-pitched sound of the pencil grinding down hit the airwaves and his nervous system, so overly sensitized by blindness mixed with autism. His response was instantaneous. Like he’d been struck by a massive electric current, his limp, listless body went rigid, his jaws clenching and trembling, as he pulled his hands away from the book to ram his fingers into his ears, crying, “Turn the pencil sharpener off!”
“I don’t want to touch
the bumps,” he said, getting
agitated. And yet that was my
son’s sorry task, touching
bumps that had no meaning;
all the while he wanted to be
in the group spelling and
doing phonics out loud. It
was as plain as day.
Mrs. Spader looked at Rex, whose face was beet red with the impact of the shock, then said, with unseemly, almost eerie calm, “Trisha, you know you’re supposed to let Rex know every time you sharpen your pencil.”
Acknowledging her oversight, the girl mumbled, “I’m sorry,” as she returned to her seat. Slowly, Rex pulled his fingers out of his ears, although his face was still flushed. He had a wary, defensive look, lest there be a new assault on his sensitive system. I was beginning to see why my son was always so tired after school, as Karen said, “Come on, Rex. You need to calm your body down and do your work.” Calm his body? Didn’t they understand what that did to him, the extent of what had just happened?
I took a deep breath to calm my own body down, while Rex’s hands finally came to rest on the Braille page, not calmed but numbed. He ran them mindlessly back and forth across the page, clearly not feeling anything he was touching, accomplishing nothing. He sat there in a numbed state for a couple of minutes, emotionless, practically comatose, ignoring the specialist who had come to work with him. I wanted to walk over to his teacher and ask why Rex wasn’t in her group, participating, but bit down on the temptation. I was there to observe, not interrupt or advise.
All of a sudden, the school bell rang, another jolt that shocked Rex out of apathy back to hypertension. His fingers shot back to his ears as Karen pulled the almost-empty page Rex had Brailled from the Braillewriter. Mrs. Spader said, “Time for recess, everyone. But remember, we all must wash our hands before we can have our snack and go out to the playground.”
Her students pushed back from their desks and scrambled toward the sink, just behind Rex. The younger students jumped up as well, and the resultant hubbub all around my son caused him to push his fingers even deeper into his ears. As I watched the kids taking turns to wash their hands, I cringed, fearing the running water sound that had always been so hard for Rex. Then I became aware of a sustained pitch emanating from his mouth. “AAAAHHHH.” It was his own personal white noise. Like a pacifier, the sound soothed him, somehow holding the cacophony around him at bay. But for how long?
One of the older boys was just heading for the door when Mrs. Spader stopped him with a request. “Thomas, I’d like you to help Rex today.”
Thomas turned around. “Okay,” he said, walking over to my son’s seat, obviously knowing what his task was. Rex still had his fingers in his ears as Thomas told him, “Rex, I’m going to help you walk to the playground.”
Rex didn’t respond, and so the teacher said, “Stand up, Rex. You need to wash your hands.” When there was still no response, she placed her hands under his arms to prompt him into movement. Slowly he stood up, and she turned him around so he was facing the sink. “Come on, Rex. The sink is right in front of you.”
Just then, a girl who had just finished at the sink turned quickly and bumped into Rex, knocking his fingers from his ears. He stumbled, and as he shifted his weight to avoid falling, his sustained “AAAHHH” sound grew louder, a protective, almost desperate crescendo, struggling to filter out the chatter and chaotic crush around him, struggling against autism and the distortion it caused in his brain. Thomas, impatient to get outside, took Rex by the hand, saying, “Come on, Rex. We’ve gotta go.” He tried to pull him forward to the sink, but Rex couldn’t take any more jostling and jerked his hand free as two more classmates moved past to go outside.
Mrs. Spader instructed, “Try again, Thomas.”
The boy tried again and was resisted again. Rex yanked his hand once again from the older boy’s grasp, saying, “Bye, Thomas. Bye, Thomas. Bye, Thomas”—a desperate try at dismissal.
Mrs. Spader said, “Thomas, you can go ahead. I’ll take care of Rex.” And the boy ran off, relieved. As the last student turned on the faucet, Rex backed up to remove himself from the scene and bumped into his desk. That was the final straw, and it snapped his brain wires, plummeting him deep into the vortex of his autism. He began spinning his body in space, like a whirling top, his brain having been turned to chaos. I watched my child with a searing pain in my gut, as if I was bleeding internally.
I jumped up to intervene, but the teacher stopped me with a look that said, “I will handle it. This is my classroom.”
But this is my son! I thought, clutching my stomach. She spoke firmly, right at him. “If you want to go outside with the others, you need to stop spinning and wash your hands. The sink is right in front of you, Rex.”
I watched in disbelief. Teacher and student were on separate planets, with no lines of communication between the two. As if I were seeing some tragic, distorted theater of the absurd, I was frozen, watching my beautiful son, blind and tragically imprisoned by autism, silently spinning in place, trying to spin his brain back into order. Losing patience, Mrs. Spader demanded, “Do you hear me, Rex?”
That’s when I snapped. It was more than I could take. Rushing across the room, I cut in, breaking my promise not to intervene. Staring straight at the teacher, I was livid. “Don’t you understand? This is a spatial and sensory issue. Can’t you see how hard he was trying to sort out all the confusion and noise? Don’t you think he wants to be outside with the other kids?”
“Trying so hard?” she countered, in a tone of disbelief. “He washes his own hands all the time. So I know he can do it if he wants to, and yet today he chose not to. That’s behavior!”
How could this special-education teacher just not get it? I wanted to shake some sense into her, some understanding. But here, today, all I could do was put my arms around my boy to stop his spinning, applying firm pressure to reassure him, reaffirming my maternal role of comforter. Then, staring at his teacher with protective outrage, bordering on hate, I reaffirmed my maternal authority as well . . . and with that, a mother’s duty to defend her son. And so it was in a voice verging on explosion that
I said, “We have to have an intervention! I want everybody who works with Rex to come to an emergency I.E.P.!”
CHAPTER ELEVEN
I.E.P.
For God did not give us a spirit of timidity,
but a spirit of power, of love and of self-discipline.
—2 Timothy 1:7
I hated confrontation. But I knew there was no choice. It was imminent, just moments away. So I called up the spirit of power, love, and self-discipline through prayer, as I had done before so many times during Rex’s life. In times of confusion, in times when I’d been paralyzed by fear or doubt or anger, when I’d had to “buck myself up” to fight the good fight.
In the days since my classroom observation, I’d been consumed with such intense anger and indignation that it had left me feeling sick and crazy half the time. Internal dialogues would run rampant in my head, back-and-forth discussions attempting to reach ground where mediation and remedy would be possible, but always ending up with a furious indictment: “How could they?” or, “Doesn’t she get it?” Fortunately, the other half the time, I somehow managed to get past the emotion in order to deal with the reality of the situation. That meant doing my homework. What was the reality of the law? And how could theory be made applicable in Rex’s case? I.E.P. stood for Individualized Education Plan, and it had become glaringly obvious I needed a plan of my own. A plan to present at this meeting I had demanded. The I.E.P. was an actual document, the result of team planning at the normally annual meeting. It contained all the vitals for a child’s “appropriate and least restrictive” educational year. Delineated, in black and white. But what they currently had down on paper for Rex, and in their minds, was not only failing my son educationally but undermining his being.
I had delivered Rex to his classroom, and now I sat in our parked car. My senses seemed muted. I couldn’t see blue in the sky or pink in the roses today. The colors faded before my eyes, and textures went flat in this world that was suddenly two-dimensional—black and white, darkness and light. In fact, all I really saw was the door to the meeting room off in the distance, and it was formidable, as the assemblage inside was sure to be. Behind the solid door would be a long table, long enough to seat all the specialists involved in my son’s school education. Everybody would be there today—I had demanded it. I was determined the “team” the law promised would act as such and would include me in the process. But to accomplish that goal, I had to calm my nervous stomach. I also had to transmute rage to righteous outrage and controlled power here and now. Other parents took advocates with them to these meetings in order to stand up to a room full of district specialists and fight for their children. But I didn’t have an advocate, and so, taking a deep breath, I opened the car door to do the job myself.
I strode across the parking lot, head up, shoulders back, using each step to buck myself up a little more. Walking through the door, my eyes swept the room, making a silent head count of the impressive group. All present and accounted for. The principal sat at the head of the table, even though Mrs. Spader, as Rex’s teacher, would be conducting the meeting. Otherwise, the team included the school psychologist, Karen, the vision specialist, the orientation and mobility specialist, the occupational therapist, Coach Gary for adaptive P.E., the speech pathologist, and, upon my expressed request, Rex’s aide.
The door closed decisively, as though a court was now in session. As I sat down, all eyes were on me, and I felt the intensity of that moment in the depths of my soul. I knew just how much was at stake right here, with each word having the power to either mend and empower or aggravate and undermine. And my son’s future in this school hung in the balance.
Rex’s teacher called the meeting to order, looking first at me, directly across the table from her, and then in turn at the other participants at the table. “We are meeting today to discuss some concerns Rex’s mother has regarding his education.” Then facing me, she said, “So go ahead and begin, Cathleen.”
Taking a last silent breath to steady myself, I looked at each person in turn, each member of my son’s team I hoped to draw into a greater spirit of collaboration. I had planned out each issue and would be careful to blend any suggestion and concern with suitable appreciation for the positives. And I knew some parts of his school worked well, like his orientation and mobility instruction that had led to breakthroughs in allowing his sensitive hands to use a white cane effectively to guide his walking, or the efforts of his instructional aides to assist him throughout the day. But then, looking across the table at Mrs. Spader, something in her look (was she just humoring me?) made me lose my composure, and suddenly anything positive I might have mentioned as a warm-up gave way to a whole slew of negatives. “Every day when I pick Rex up from school, he’s just exhausted, and he’s becoming more and more apathetic and nonresponsive when I ask him about his school days. After observing him in the classroom, I understand why that is.” I hadn’t meant to just lay it all out, but there it was.
His teacher cut in,
defensive. “That’s the same
thing we’re trying to address
in the classroom: his apathy.
It’s so difficult to motivate
Rex and keep him on task.
You saw that.”
His teacher cut in, defensive. “That’s the same thing we’re trying to address in the classroom: his apathy. It’s so difficult to motivate Rex and keep him on task. You saw that.”
I leaned forward in my chair, pressing my hands into the table, hoping the pressure would help me refrain from jumping on her statement. Not wanting to play a role of prosecutor, I spoke commands to myself. Pause. Take a breath. Okay, go. “But why is he apathetic? The other day, Rex couldn’t focus on his Braille. Yes, that I saw. But he wasn’t apathetic about phonics—in fact, he jumped on every answer. It seems like a natural thing to want to be part of the group phonics lesson.”
“Rex has special needs that have to be addressed,” the teacher retorted brusquely. “Karen comes to teach Rex Braille three times a week so he’ll be able to read and write. That seems like it should be a priority.” Mrs. Spader then gave me that patronizing look I’d come to hate.
I didn’t want to answer her directly, not when she spoke in that tone. So I addressed his Braille teacher. “I’d like to talk about Braille in a minute, but first I’d like to know, Karen, if you can schedule Rex’s service time outside of the group’s time? Rex also needs phonics skills, and he needs to work with other kids.”
Karen looked uncomfortable, shifted slightly in her seat, and said, “No. It’s the only time that works into my schedule. I have kids with visual impairments in three different districts to provide services for.”
That works into her schedule? I couldn’t just let that pass by me. “Isn’t special education supposed to put the child first and work around his needs, not the needs of the teachers?”
Karen didn’t answer, but Mrs. Spader did. “We try the best we can to work within the constraints of the system.”
I felt as though I was banging my head against a double-enforced iron wall of budgeting and scheduling issues. To pursue that at this point seemed futile and would probably take the steam out of the many other concerns I had. I squeezed my hands together, trying hard to suppress frustration, and took aim at a very critical issue. “I can appreciate how excessive your workload might be, but that only leads back to what your time is really accomplishing. I watched Rex with you for fifty minutes, and he was inattentive to the point he almost fell out of his seat! And his Braille page was all but empty at the end.” I wondered what these other specialists here thought about that. Did they think that type of a session was normal? Or acceptable? I felt a nervous sweat building from this emotional issue. Karen was staring down at her hands on the table as though breaking eye contact would somehow stop me from saying what I was saying. But I couldn’t stop, because I was a mother fighting for her son. “I think you’d have better luck getting Rex’s attention by making his work more
engaging, by having more life in your voice.”
When Karen didn’t reply immediately, Mrs. Spader jumped on it. “What do you want us to do? Make school a game for Rex?”
“No, but it does need to be more stimulating,” I countered.
“Stimulating how?” she asked. “By making him dependent on overly exaggerated speech? He won’t find that in the real world.” She paused, then added with a touch of impatience, “And I think we’ve had this discussion before.”
Why does she insist on baiting me? I thought as I tapped my fingers on the table to calm my nerves. Ever since kindergarten, I had voiced the necessity of speaking to Rex with an animated voice in order to gain his attention. It seemed an obvious necessity, given his blindness and overdependence on auditory input. We seemed to be at a standoff on the issue, and my frustration was mounting as well, having to return to this old issue. “But we’re not talking about the real world. We’re talking about school, and motivating a child with special needs to accomplish a boring, academic school task. What is on every wall of every classroom here? Brightly colored artwork, pictures. Numbers and letters. Why is that?”
The principal was smiling, presumably acknowledging the learning environment in her classrooms. “To stimulate and encourage learning,” she said, then added reflectively, “for the sighted students.” She nodded, as if to say, Makes sense a blind child would need some stimulation of a different sort.
Grateful I’d scored a point, I didn’t want to let the momentum slide. “Do the sighted kids expect to find purple elephants or giant numbers hanging from the sky when they go outside the classroom?” I let the words hang for the briefest second, glaring and obvious, then added, “So why isn’t my child receiving equal treatment to stimulate him?” Couldn’t they see what he needed? Didn’t they know by now? My stomach tightened at the thought that they really didn’t. “Is that fair to Rex?”
There was a moment of silence in the room, no one daring to touch that one. Instead, his teacher chose a different track. “Cathleen, even when I speak loudly to Rex he doesn’t stay on task. He has behavioral issues we need to address before any other teaching technique will have a chance of keeping him on task.”
Rex Page 17