An Uncomplicated Life (14 page)

Teachers are no different than the rest of us who might have been doing something a certain way for a long while. They’re resistant to change. They’ve taught a certain way, with a class full of typical kids, and they don’t like being told how to do their jobs.

They resist because, as Nancy Croskey suggested, “Some of the younger teachers think of it as an easy way to earn a living. They don’t want to ruffle feathers. They do what they’re told.” Nancy also believed that special-ed teachers “pigeonhole kids like Jillian. They set goals that were too low, because they knew they could reach them.”

After Jillian finished fourth grade, she would go into a new building for fifth grade, and again the district wanted to place her in a special-ed unit classroom. Unit classrooms were a relic from the 1960s. The belief was they made it easier to
“manage” “those” children if they were all in one group. Little consideration was given to the fact that they would receive a lesser chance to learn academically or they would miss out on being integrated into the school culture as a whole. Unit classrooms were easy and cost efficient. There was no need to “bother” classroom teachers with kids with special needs.

During the summer before fifth grade, Kerry and Nancy Croskey met with the intermediate school principal and the special-education teacher. Nancy argued that Jillian had to be in the regular classroom. “Not just for her sake,” she said, “but for yours, too. You’d be doing a disservice to your teachers, and to the rest of your students, not to include Jillian in their classrooms. It will make them better teachers. It will make your students better people.”

Nancy was persuasive. Jillian would be in the regular-ed classroom.

Meantime, the IEP meetings with Jillian’s “team” of teachers and aides continued. We’d meet in the spring, to set the goals for the next year. We’d meet again in the fall, to make sure everything was in order. We’d meet other times, too, when Kerry and I had issues. We had lots of issues.

We’d ask that homework assignments be modified so the amount of work was at a more manageable level for Jillian. We also requested that the classroom aide or the special-ed teacher amend the questions or problems to Jillian’s aptitudes. What we got, generally, was less homework with the same degree of difficulty. If the rest of the class had ten questions, Jillian got six or seven. That’s not modifying.

We’d beg that aides help Jillian with her assignment book, the paperback-size ringed binder that kept her day straight.
We asked them to go over it with her before she left for the day to make sure it was complete and accurate. Often, it was anything but. Jillian managed it herself most days.

“Did the teacher help you with this?” we might ask after looking at the assignment book at home.

“No,” Jillian would say. “I do it myself.”

Later, in high school, the aides often took Jillian out of the regular classroom and brought her into what was known as the “resource room” to work on classroom assignments. The resource room was a place for her to feel excluded. It was a place for students with special needs to be segregated from their typical peers. It was easier for the aides to work with Jillian there, apparently, though no explanations were ever offered. But it wasn’t the law. It wasn’t part of Jillian’s IEP. Kerry and I had to insist that Jillian not be pulled from regular-ed classes.

We also requested that we be given a week’s notice before major tests. That rarely happened. We asked that teachers provide a modified study guide for those tests. Generally, Kerry and I did the modifying. We’d send notes in with Jillian, asking teachers to do better. Sometimes, after a long and fruitless homework session, frustration would do me in. I’d write machine-gun blasts in the margins of the assignment book.

“DON’T UNDERSTAND THIS. NOT MODIFIED.”

On other occasions, my notes would be longer, tamer and filled with begging:

“We want to help Jillian. She’s eager to do the work. We need you to make sure her assignments are accurate and modified. Help us help her. Thank you.”

Or, on nights when I simply wasn’t in the mood:

“ANOTHER WASTED EVENING. PLEASE DO YOUR JOB.”

It wasn’t the hours required. It wasn’t Jillian’s lack of trying. It was the grinding exasperation that, seemingly, the teachers and the aides didn’t understand what we needed. Or worse, didn’t care.

I felt as if I were pushing the same boulders around the same room every night. Home should be a haven, where you go to escape the workday crush. For a few hours lots of weekday evenings, it was anything but.

Happily, it never affected the way we dealt with each other. If anything, the homework frustrations tightened our collective fist. We couldn’t fight for Jillian if we fought each other. And since Jillian’s education wasn’t Kelly’s concern, we didn’t let our anger impact anything we did with him.

We coped by plowing ahead. We fed off Jillian’s successes. Singular pursuits have no room for sideshows.

After a while, though, Kerry did wise up to my exasperation. She’d filter my anger. Or toss it away. “You can’t say that,” she’d say.

“The hell I can’t.”

“That isn’t helping.”

“It helps me,” I’d say. “Besides, what is helping? We have the same discussion, over and over.”

There were other things. The intermediate school didn’t give Jillian a lock for her locker because they didn’t think she could manage a combination. She went a few months with an unsecured locker until Kerry visited her and noticed it. Kerry requested a lock. We worked with Jillian for a few hours until she learned how to use it. This seems a small thing, one play
early in the first inning of a baseball game. But when you’re dealing with perceptions that need to be changed, a child without a lock for her locker represents the bottom of the ninth.

The constant push-pull served no one’s needs. Months of frustration would gather and spill over at the IEP meetings. The meetings became a contrary mash of tension and tediousness. After a few minutes of introductory, forced politeness, we’d address the IEP itself. It was 12 pages of vague and obvious goals—“Jillian needs to fully and successfully participate in the general education classroom”—and concrete services that were often ignored: “Chapter outlines for Science, Social Studies and English provided at beginning of each unit (by regular teachers).” That kind of thing happened rarely, and usually only when we insisted.

Still, Kerry and I continued to attend the school meetings, and she had faith that the teachers would teach Jillian to the best of their abilities no matter what was written in the IEPs. They would challenge Jillian and set goals. We assumed that if she could handle more than the goal, they’d give her more.

Kerry didn’t take the time to read and study the IEPs. She trusted. I didn’t study them either. I trusted too. These IEPs were coma inducing. We trusted the school to do what it said it would do. It would follow the road map. It would alter the route when necessary. We assumed this. Jillian’s elementary school experience suggested we should. That was a mistake.

As Jillian advanced to high school and tested far below grade level, Kerry went back through Jillian’s IEPs for grades five through eight. What she discovered was that entire IEPs had stayed exactly the same from one year to the next. Not only weren’t the teachers modifying tests and homework, they
weren’t revising the IEPs either. Nor did they ever take into account Jillian’s achievement and deviate from what was in the IEP. The road map never changed even as new highways were built.

Jillian’s teachers did what was easiest, not what was right. Least resistance was the preferred path. They took advantage of our trust. They stunted Jillian’s education. They did it for years. It felt like a punch in the gut.

“I should have been more vigilant,” Kerry said. Maybe so. But it wasn’t our vigilance that needed to be questioned—it was our trust. We believed in teachers, partly because Kerry was one. She knew the challenges. “I realize there are only so many hours in a day,” she said.

That wasn’t it either. Time didn’t shortchange Jillian. Attitudes did. The only time the shackles of perception—Can this child really learn at her grade level?—loosened was when Kerry and I were a perpetual pain in the ass at Loveland Intermediate. But it was a constant struggle, and the shackles never came off completely.

When Kevin Boys said, “By and large, school people are good people who want to do the right thing,” we agreed. Why wouldn’t they want to do right? As Boys added, “The person you’re arguing with across the table has children, too.”

Yes. But his child isn’t my child. If that were so, chances are he’d be arguing and fighting on behalf of his child the same way I was. There was never anyone on our IEP team who had a child with an intellectual disability. No one walked with us on that path. I wonder how that might have changed things, if anything might have been different.

I was not George Bernard Shaw’s “reasonable man.” I fully
expected the world to adapt to me. I had the law on my side. Some parents of kids with special needs are grateful that their children are even in regular classrooms. I wasn’t one of those parents. Neither was Kerry. We knew Jillian deserved better than she was getting. And we were right.

“Why don’t you people simply obey the law?” I said during one IEP gathering.

“I don’t think there’s any call for argument,” came the answer. “We all want what’s best for Jillian.”

“Then do it,” I said.

That’s when everyone would flip the page of the IEP, metaphorically flipping me off and returning to the tense and false civility that marked most of these meetings. It was always easier for the school people to hide behind vaguely defined “goals” than to actually defend their position, that Jillian couldn’t learn to the extent we believed she could, so why try? Which, strictly speaking, was indefensible.

There was an ideal in all of this. As the IDEA ideal was originally conceived, it was supposed to look like this: Teachers and typical kids engage a child whose ability to learn was compromised in the womb. They come to realize that she takes longer to learn, to speak, to grasp. Being with Jillian is life in slow motion.

In return, they get a friend. Someone guaranteed never to judge them or make them feel small. Jillian’s intellectual blinders allow only good thoughts. Her capacity for uplift was limited only by those who declined to embrace it. Jillian lived up to her end of the deal. She gave, freely. Teachers and peers never got cheated. They would come to understand that different isn’t bad.

Ideally, it’s a good contract. Everybody wins. That was the argument Kerry and I would make, time after time at the meetings.

That’s when someone would say, “Let’s turn to page eight.”

In Jillian’s 16 years of education—counting preschool and two years of kindergarten—I never owned a firm grip on how lots of Jillian’s teachers regarded her. Burden or opportunity? A willing participant in the learning experience? Or a drag on the day-to-day progress of the entire class of kids? It’s unfair to say they all felt more burdened than enriched by having her in class. It’s easy to say they didn’t work hard enough. I’m not a teacher. I don’t know the challenges they face every day.

I know my daughter though. I know the opportunities missed by teachers who thought she was burdensome. When her time was done, I credited her cap-and-gown moment as much to her as to the people to whom we’d lent her seven hours a day, five days a week.

When Congress passed IDEA in 1975, its members didn’t envision this sort of showdown. They just wanted to give kids with disabilities a fighting chance. We fought, all right. After a few years of this, and certainly by the time Jillian was in high school, it became less about getting her the services to which she was entitled, and more about principle. It became about winning.

Education speaks to the heart of everything we wanted for Jillian. The fight to get her educated brought every element of dealing with a disabled individual into play. What we want for Jillian and what the world believes is possible are getting closer, but they’re still not the same. Until we span that canyon, lots of people’s talents will never be utilized fully.
This issue isn’t only about kids with disabilities. It’s about how perceptions limit or expand potential. Ask African Americans: How many of our citizens have been denied a chance to shine? How much light did the rest of us miss because of it?

Jillian was in the eye of it all, the most eager of students. On the morning of her last day of her fifth-grade year, Jillian sat at the kitchen table, pounding a bowl of Frosted Flakes. She was unusually quiet. I don’t like morning. It’s best not to speak to me before noon. Jillian never followed that rule. Most mornings, she was a rooster.

“What’s up, Jills?” I asked.

“I know I’m weird,” she said. “But I’m really gonna miss school.”

CHAPTER 11

Homework

I am defeated all the time. Yet to victory I am born.
—
RALPH WALDO EMERSON

E
ven during the worst of the IEP collisions, no one doubted Jillian’s determination and effort. She’d inherited Kerry’s steel will, and she had her own desire to make people happy. Nowhere was Jillian’s school spirit more defined than at the homework table.

Homework became a metaphor for everything we were up against. We had demanded that she be fully included in regular-ed classrooms. Homework was the symbol, sometimes mocking us, that Jillian be given her rightful chance. So here she was, in the midst of a nightly homework morass. You asked for it . . .

Kerry and I felt a certain pressure to justify what we’d insisted on for Jillian, and at times we’d despair when it didn’t work. Homework was the first line of resistance in a school
system we were forcing to change. It was front and center in our ongoing battle to get Jillian the education to which she was entitled. Kerry and I were Daniel Boone. We were blazing trails at school. Homework was the bear in the woods.

Jillian’s backpack was an impressive place. It was an exaggerated purse. Fossilized items—peanut butter and jelly sandwiches, for instance—could be found at the bottom. Anything a kid who loved school could ever possibly need was jammed into that stretched assemblage of nylon.