An Uncomplicated Life Read online

  “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.r />
  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

  Even 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.

  You could also count on finding various lunch accoutrements. I packed her lunch half the time, but that didn’t stop Jillian from adding to the scripted menu. Oreos were a favorite as she got older, but there were potato chips and crackers of all sorts. At Halloween, all manner of bite-size teeth killers got in the bag. “I love my lunch,” she explained. Jillian packed for school as if she were going on an eating vacation. And don’t forget the miniature football, for recess with the guys. And a frame, containing a three-by-five-inch picture of Walker, our black Labrador retriever. “Why do you take a picture of Walker to school?” I asked.

  “Because I love my Walker,” Jillian said.

  The backpack was so big, we worried about back pain. If Jillian weighed 85 pounds in fourth grade, 25 of them were owed to this appendage she yanked onto her shoulders. She looked like a mover hauling a refrigerator.

  “Is that thing too heavy? Let’s see what we can take out of there,” I asked occasionally.

  “It’s fine, Dad. My ’portant stuff.”

  We pondered getting Jillian a small, wheeled suitcase, but we didn’t know how she’d manage climbing the school bus steps. So we sent her off every morning with a refrigerator on her back. Pencils, pens, markers. Reams of notebook paper. A ruler, a big eraser. Why do you need a thousand sheets of paper? “For big mistakes,” Jillian offered. Separate three-ring plastic folders for each subject. A hairbrush.

  And an assignment book. That weighed the most. On all of us.

  Every student had an assignment book for homework details. It was the size of a five-by-eight-inch book. Each lined page had a day and a date. All students were expected to write down their homework assignments; so was Jillian, though she often had help from an aide. Sometimes, the assignment book was perfect, the key to the homework highway for that particular night. On those days, each subject would be followed by a colon, then the pages to be read or the problems to be worked. Jillian had written it all in, in her diligent scrawl that was just legible enough. Just as often, the aide had done the writing. On those blessed nights, we could begin the homework task assured that we were doing the right work.

  On other nights, the assignments would be wrong. On those nights, the assignment book assumed a life all its own. It was an evil existence, full of fear and dread and my four-letter frustrations that sometimes made Jillian cry. “The damned homework is hard enough when the assignment is right!” I’d say. “What is so (expletive) hard about an aide or a teacher looking at the (expletive) assignment, to make sure Jillian copied the (expletive) thing the right (expletive) way?”

  All kids need help with homework sometimes. With Jillian, help with homework was an occupation that became a preoccupation that became an obsession that, on occasion, became a full-blown source of rage and doubting.

  Kerry and I alternated homework nights, because after working all day ourselves, neither of us relished consecutive nights at the kitchen table. Kerry was far more patient than I, partly because she was a teacher and patience is a teacher’s best friend. She was also more closely involved with Jillian’s day-to-day learning and thus better equipped to deal with the setbacks.

  I just got mad a lot.

  “Whaddaya got?” I’d say.

  Jillian would haul in the backpack, toss it onto the kitchen table, an act of physical strength and an unburdening.

  “Math and vocab,” she’d say.

  “Lemme see the assignment book.”

  Jillian would scrape through the backpack and tentatively hand it over.

  On the good nights, we’d start right away. “It says, ‘Review vocab words for test Friday.’ You got the words?”

  There’d be more pawing, deep into the maw of the backpack, where she’d find 16 three-by-five index cards. Eight with words on them—eight with definitions. So far, so smooth.

  Mary Smethurst had picked the words. Mary was Jillian’s aide for three years, grades two through four. Caring, empathetic and kind, Mary became the engine of Jillian’s aspirations. If Jillian was able to learn something, Mary would see that she did. She wrote the vocabulary words on one side of the index card. Sometimes, on the other side, she’d draw a picture to illustrate the word. We’d look up the word, then write its definition on a separate card.

  This side of the kitchen table: Words.

  That side: Definitions. It was like when we played Concentration with playing cards.

  “You ready?” I’d say.

 
Jillian was always ready. She was born ready. “Of course,” she’d answer.

  “Challenge,” I said. A fitting word to start with, I thought.

  “Change,” Jillian said.

  “No, sweetie. ChaLLenge.” I’d press the tip of my tongue to the bottom of my upper lip. I’d draw out the L sound. Lllll. ChaLLenge.”

  “Change.”

  “Look at me. ChaLLenge. Two Ls in the middle,” I said. “Le, le, le.”

  “ChaLLenge,” she said. “Le, le, le.”

  “A call or summons to engage in any contest,” I said.

  The card with that definition was in the opposite row. “Do you see it?”

  Jillian scrunched up her face in concentration so that her brow furrowed and her nose assumed the shape of a rabbit’s. “No,” she said.

  “Look closer.” I repeated the definition, slower this time.

  Jillian scanned the list. “What was the ‘denition’ again?”

  “It’s deFInition, Jills. There’s an FI in the middle.”

  More face scrunching. It was never Jillian who became impatient or discouraged. That was my job. “De-FI-nition,” she echoed. “That one.” She pointed to a card.

  “Great job!” I said.

  “Thanks, Daddy-O,” she said.

  And so it would go. When Jillian matched a pair correctly, she’d remove it from the table. On the good nights, the words were pronounced and defined and the 16 cards were off the table in two hours. Eight vocabulary words, two hours. Fifteen minutes a word. The lifting was heavy and exhausting, on the good nights.

  On the bad nights, it was something else. Jillian’s lesser intellect intersected with her teachers’ occasional apathy to produce in me a frustration that could slip into sadness. On nights when the homework careened off track, I could lose touch with Jillian’s guts and determination. I’d fall down the rabbit hole and into despair.