Reasonable people, p.16
Reasonable People, page 16
“Listen, Cathy,” Emily had replied. “We can either do this in a friendly manner or an unfriendly manner. My husband and I vote for the friendly manner at DJ’s neighborhood school, but, of course, the choice is yours.” The woman wisely agreed to hold the meeting at Linney, ascertaining, I think, that we were the wrong people to mess with. She could make things as difficult as possible, but she’d heard in Emily’s carefully modulated tone a will and resources that could come back to bite her if she went too far.
I pick up Emily’s account with a kind of pre-game pep talk:
The strategy was this: remain calm, kind, and firm. Prepare for a barrage of hogwash and condescending “expertise” with a varnish of charitable “good intentions” for “what’s ultimately best for the child.” Do not, repeat, do NOT be incited to anger by nonsensical remarks—most likely to come from the special education teachers and/ or possibly the county ESE supervisor. Remember the cognitive behavioral strategy you use to teach anger management: take a deep breath, remind yourself that none of these people know how to teach kids with autism. (There had never been a nonspeaking child in a regular classroom in the county’s history.) Remind them that this is a partnership and you’ll be there to help. Use things they’ve said to prove your point.
The law mandates that IEP decisions be made in this order: first, establish goals; then, decide what “level of support” is needed to reach those goals. In other words, what is innocuously labeled “Description of Current Level of Functioning” serves, in fact, as a prescription of who that student can become in the future. We emphasized three key areas: literacy, social-emotional development, and communication. We crafted the goals to dictate teacher instruction—the kind we wanted for DJ. My husband’s insistence that we include the phrase “to begin to ask him important questions about his life” took an hour to get on the IEP and was scoffed at by the center school crowd. The first half of that goal—“Will learn to answer ‘wh’ questions”—had taken forty-five minutes, so averse were these people to imagining DJ’s future competence.
Once the goals were in place, the county argued for a class at the center school with “more emphasis on academics.” “It’d be hard to have any less, that’s for sure,” I thought, but then smiled and said, “That would be great if our only concerns were for academics. To be quite honest, I feel I can teach DJ lots of his academic skills one-on-one at home. (And I had. In the previous month, he’d learned a lot; in the previous three years at the center school—they’d documented it themselves—he’d learned nothing.) What we can’t give him at home and what the center school can’t give him at school is constant exposure to peers who model verbal communication and social skills. You mentioned earlier that DJ has shown no competence in receptive language skills. If, in fact, he is able to think only visually, then for all we know, DJ has concluded that when he gets to be as tall or as old as an adult, he’ll magically be able to speak. And if socializing is very difficult for DJ because of his autism, then he needs to be around kids for whom it’s easy, so that some of them might begin to reach out to him.”
“At this point, DJ has not been able to achieve a single IEP goal. How could he possibly make it in a regular kindergarten class?” the resource room teacher at Linney asked.
“I agree with you,” I responded. “It’s disturbing that DJ has not met a single IEP goal in his three years in school. But I would be more concerned about trying something else if he’d made some progress. [These goals had included buttoning and unbuttoning his shirt, putting pegs in a peg-board and staying on task for ten seconds.] Now, correct me if I’m wrong, but I think the law states that children must start out in the least restrictive environment and only be placed in more restrictive environments if it’s absolutely necessary. So, aren’t we coming at this from the wrong direction? Shouldn’t we be seeing if his learning rate improves in a regular class? Aren’t we actually obligated by law to do so? Perhaps now that he has glasses [the school district and the Department of Children and Family had done nothing to address a lazy eye that had gotten so bad that DJ’s face, neck, and chest muscles had atrophied] and a safe and stable home, he might thrive. [Here, Ralph chimed in with his ready-made exhortation about saving underprivileged kids, giving them a legitimate chance to prove themselves.] I don’t really see that the law affords us any other choice.”
“OK,” the county supervisor reluctantly conceded, “then he’ll start first grade at F.F. Linney.”
“First grade?” I queried, looking to the Linney principal. We’d never discussed first grade, only kindergarten. The county was trying to increase the likelihood of his failure.
“Well, he graduated kindergarten last year,” the vice principal of the center school stated.
“Look, he may have completed his third year of attendance at the center school, but you certainly aren’t saying DJ has mastered the kindergarten curriculum.”
“Well, no, but—”
“Plus,” I added, “his birthday’s in July, so he’d be one of the youngest first graders in his class. [DJ had just turned six.] Certainly DJ wouldn’t be the first young first grader to repeat kindergarten?”
“Well, no, but—”
“This strikes me as a no-brainer. Somebody tell me what’s at stake here. You’re all experienced and dedicated educators. You can’t tell me you support his promotion to first grade because it’s ‘in his best interest.’ ”
It was the Linney principal who spoke up, winning my trust with her honesty: “The district is strongly discouraging retaining ESE students. It’s concerned the students might remain the responsibility of the school district until they’re twenty-three or twenty-four, and it doesn’t think that’s a good idea.” [Aha, the logic behind the irrational. At that time in Florida, ESE students were being “excused” from standardized testing, and no alternative means of assessing student learning had been put in place. Concerned about the prospect of indefinite retention, schools were promoting students who hadn’t met their goals. On the one hand, DJ wasn’t competent enough to attend Linney; on the other, he had to start in the first grade, though—that’s right—he hadn’t achieved first-grade competence. The point was to take DJ’s learning seriously, not to envision a better, less depressing holding facility for the cognitively disabled.]
“We don’t intend to have DJ in secondary school past the age of nineteen,” I insisted. “Is it possible to sign a document attesting to this fact?”
“I’ve never heard of such a thing,” the Linney principal said. “But I think I have a way around the issue. How would you feel if I turned DJ’s class into a kindergarten-first grade classroom? That would enable DJ to be in a kindergarten class. No one would even have to know he was a first grader on paper.”
I believed, right then, that we could make it, though the skirmishes weren’t over. The resource room teacher who’d have DJ thirty minutes a day for extra cognitive learning would remain our biggest concern (until the latter part of the year when, noticing he possessed an astonishing visual memory, she’d decide that she might actually be able to teach him how to read). But we now had in our corner a very decent, problem-solving principal who’d adopted a child herself and understood how people work. She had heard us, I felt certain. DJ had gained an advocate.
As the group dispersed, Ralph and I were approached by the vice principal of DJ’s former school, who knew we’d explicitly asked that she—not the principal—attend the meeting. With tears in her eyes, she said, “DJ is certainly very lucky to have such well educated, articulate, and devoted parents as the two of you.”
“Thank you,” I said, half-stunned by her comment. At the time, I’d have forgiven my worst enemy, so profound was my relief at having sneaked DJ through the gates of Ellis Island, but I wondered what it was like for her to leave that meeting. Did she feel any discomfort acknowledging to her fellow teachers that DJ hadn’t learned a single thing at her school? Was she ashamed that when asked what his greatest school-related strength was, she had replied, “His good looks. He’s a physically beautiful child.”?
Emily had done it. Like Jennifer Garner in Alias, she’d vanquished the enemy and completed the mission without disturbing a single hair on her head—this despite the rhetorical somersaults and tonal duck and dodge. Driving home, my inclusion superwoman confessed that she’d stood in front of the mirror that morning and cried, wondering if she really could pull off a miracle. I thought back to how, once, picking up DJ at the center school, I’d heard a teacher refer to her class as “God’s little idiots.” I understood why Florida ranked second from the bottom with respect to services for the disabled and why families without our resources, in such a subtly acrimonious and obstacle-ridden struggle with God’s special educators, often didn’t have a prayer of mainstreaming their kids.
* * *
—
There were only ten days before the kindergarten open house, and the principal still needed to assign a teacher and hire a para-educator. At one point, amidst the panic and commotion of preparing for the start of the school year, she suggested we might be better off delaying DJ’s arrival for a couple of weeks. It would allow them time to fill his aide position and to firmly establish the school routine, something she’d gathered a child with autism required. Emily and I objected vociferously. Though we understood the awkwardness of using temporary paras for the first two or three weeks, we knew that part of belonging to a group is being there from the start. If DJ’s anxiety and confusion were ever going to fit in, they would do so alongside the discombobulated responses of the nineteen other first-time school children.
On the Thursday before school began (Friday was the open house), Emily met for about forty minutes with the woman picked to be DJ’s teacher. Alice Thompson had taught kindergarten for years and seemed relatively receptive to, though completely ignorant about, having a child with autism in her classroom. She said she’d done some reading about autism on the Internet, which made Emily cringe, as she knew the picture provided was invariably grim, if not downright hopeless. In fact, she was certain Alice had come across the phrase “devastating developmental disorder” because that descriptor (“devastating”) always seemed to come attached to the phenomenon, like some standard finish on a piece of furniture. Emily explained she’d be in the classroom for the first two weeks to train the aides and to get DJ acclimated. She had tons of sick leave available, and she planned to use it to keep close tabs on how things were going. Her colleagues at CARD were very flexible, understanding Emily’s absence as work: a kind of outreach that might end up helping kids other than DJ, for if he could be included successfully, then maybe they could as well.
The three of us went to the open house like defendants awaiting a verdict, defendants who hadn’t yet been tried! We were that nervous. Whether DJ understood what was awaiting him wasn’t clear, though he’d certainly picked up on the vibe of his parents and was flapping vehemently. Emily looked like she was about to vomit, and I was telling everyone to relax in the most unrelaxed manner. We’d reached the moment when a beautiful idea—inclusion—alights on the ground of reality, like a snowflake on warm macadam. We found DJ’s classroom and entered tentatively. Once inside, it seemed as if no one would speak to us. The other parents were standoffish, and as soon as DJ commenced flapping, people began to stare. We were too immersed in our own anxiety to recognize that many of the parents were probably sending their first child off to school and so were themselves preoccupied. Mrs. Thompson came up, knelt down to be at eye level with DJ and told him something encouraging. DJ was unresponsive, and this surprised her, as if she’d never before tried her kid-centered greeting and had it fail. Near the end of the open house, a woman approached, saying, “Are you Emily and Ralph Savarese?”
“Yes,” we replied. She turned out to be a former colleague of our friend Caroline. Caroline had been in a car accident that had left her a quadraplegic and ended her career as a gynecologist. The woman, who had a daughter in DJ’s class, had heard a lot about the fundraiser Emily and I had organized to buy a van that would accommodate a motorized wheelchair.
“You’re legends at the hospital,” she said. The woman was incredibly kind and kept the day from being a total disaster.
* * *
—
We were glad from the moment Monday began that we’d decided to have DJ start the year with everyone else. It was clear that Mrs. Thompson’s teaching style was going to help DJ and that she was going to have time to work with him. “She can teach kindergarten in her sleep,” Emily said. She was that good. She truly understood young kids: the importance of predictable routines and the advantage of kinesthetic learning. Valuable to typical kids, these things are essential for kids with autism. It would end up being a tremendous boon that Mrs. Thompson knew sign language, as we’d already discovered sign’s usefulness in escorting DJ into the province of abstraction. Combining photographs, words, and signs would prove decisive in helping DJ to acquire proficiency with representational systems. Moreover, because DJ didn’t seem to understand spoken language, sign language allowed us to exploit his obvious visual strengths.
But it was the kids’ reaction to DJ that really confirmed our decision. At our first PBS (Positive Behavioral Support) meeting, Mrs. Thompson remarked, “The kids have convinced me this is the right thing to do. I was shocked to discover our adult concerns about their acceptance of DJ were just that: adult concerns. They absolutely love him and don’t question for a second whether or not he belongs.” Such a remark, so early in the school year, helped to set a tone of enthusiastic endorsement, especially at meetings intended to confront problematic behavior. Mrs. Thompson was right: the kids did love DJ. A boy named Austin regularly offered Emily words of encouragement: “DJ was a little nervous today, but I bet he’ll feel better tomorrow.” His would be the first of multiple birthday invitations DJ received—each of them treasured but Austin’s particularly sweet for two reasons: first, except for one other kindergartener at Linney who lived across the street from him, Austin invited only nonschool friends, and second, he told his parents he wanted to have his party at Skate Station because he thought DJ would love it. Kids used his photo schedule to see what classes came next, whether they had PE or library that day. Other kids volunteered to be the recorded voice on his communication devices, to be his partner in line, to sit beside him in circle. Three little African-American girls flirted with DJ, admiring his curly locks and slate-blue eyes. “He’s so fine,” one of them said, giggling. “He’s sooooooo fine,” another replied.
Still, at times the task of settling DJ into the classroom was daunting. For starters, he had a very hard time physically supporting his body in the cross-legged position required of every Circle Time participant. After two or three minutes, he’d grow weary and lie down unless propped up against one of us or seated in a chair at the end of a table that abutted the Circle rug. Later in the year, we’d decide that letting him “draw” with markers at the table enabled him to sit most independently during Circle Time, so that’s what we did.
DJ’s way of coping with stress was to go to the bathroom (which was located inside the classroom) and repeatedly flush the toilet. He loved to watch the swirling water, and he’d flap, whir, and moan in a frenzied manner. This particular coping strategy made Emily very uncomfortable because Mrs. Thompson was married to a firefighter, and, more than anyone at Linney, she understood the importance of conserving water. All summer the state had been plagued by terrible fires and drought conditions; one fire had made it within a few miles of our town. Along with his periodic meltdowns and occasional hitting and scratching, DJ’s perseverative tendencies taxed everyone—though, interestingly enough, the adults more than the children. Late in the year, after most of our fears about DJ making it had subsided, the principal would tell Emily a funny anecdote about the first time Mrs. Thompson showed up at her office, beaming about DJ’s success. “He’s doing much better,” Mrs. Thompson reported. “Today he only flushed the toilet three times.” Mrs. Bollinger remembered being unprepared for such a report. She’d say it was a turning point for her, a moment when she realized that “DJ’s gains would be numerous and quite different from those of his peers.”
As the first month wore on, Emily and Mrs. Thompson developed a sturdy, even affectionate, bond. Because she hadn’t attended the IEP, Mrs. Thompson hadn’t heard about DJ’s heartrending past. Emily was so modest and discreet that she’d neglected to use this Archimedian lever, assuming, I think, that the principal must have informed her. When she finally learned of the abandonment, abuse, and separation from his sister, Mrs. Thompson committed herself even more to DJ’s inclusion. “I want you to know I’m a hundred and fifty percent behind making DJ’s year in kindergarten a success,” she told Emily one morning. “I don’t know all of the answers, and I’m sure there will be hiccups along the way, but I feel strongly that DJ’s in my class for a reason. It’s clear the children know he belongs with them, and we understand each other well. Having you in the class periodically is easy, and I feel like I can ask you for help whenever I need it.” Emily wanted to collapse in tears, she later told me, so grateful was she for Mrs. Thompson’s boundless generosity.
By the end of the year, she’d barely be able to say good-bye to Alice. As Emily would explain, the woman had possessed the same power so many other teachers possess and use to remove children from their classes, but she had never, ever used it. Nor, finally, had any of DJ’s other teachers at Linney, even when legitimately provoked. Mrs. Thompson, however, had welcomed hope when hope seemed most alarming. If you consider how poorly paid American teachers are and the many hardships they put up with, it’s amazing they aren’t all incorrigibly jaded and resentful. It’s amazing, too, what kind of cooperative community can be forged when parents involve themselves intensely in their kids’ educations, volunteering time, offering support and gratitude.
