An Uncomplicated Life Page 10

  What happened in the next ten months was a collaboration of hearts and minds. Two people shared what was best about each other. When it was finished, both would be changed profoundly. Congress created IDEA so that relationships could form, like the one between Jillian and Mrs. Croskey. Opportunity met burden, and found it light.

  WHEN NANCY CROSKEY WAS in the sixth grade, her teacher said to her, in front of her classmates, “You’re not as smart as your brother.”

  But Nancy was smart, even if her intelligence was tucked away, inside her shyness, buried beneath an inability to comprehend what she read. She dreaded being embarrassed in front of the class. “I was a slow learner,” she recalls. “If I were in school now, I’d be on an IEP.”

  She knew all the words, and she could pronounce them. She could watch them and study them and roll them across her tongue until they emerged as speech, whole and perfect sounding. It was a grand illusion; Nancy didn’t know what the words meant. Children laughed at her, and that was terrifying.

  This wasn’t limited to reading books. Nancy got lost on math problems that involved words. “If Johnny went to school with three cookies in his lunch bag, and gave away two . . .” Dread arrived in first or second grade when Nancy was made to read aloud to her classmates, and was then asked to describe what she’d just read. “I was humiliated,” Nancy recalls.

  This smart, underachieving little girl began to fear school, until she found an ally in third grade. A teacher she remembers only as Mrs. Daniels recognized her limitations. What previous teachers had seen as a burden, Mrs. Daniels regarded as a chance. She didn’t make Nancy read aloud. She could tell that Nancy was a visual learner.

  Mrs. Daniels taught her multiplication with numbered magnets affixed to a wall. Nancy could understand what she saw. Mrs. Daniels chose books that partnered pictures with the words to further the story. If Nancy could see an idea, she could remember it and express it.

  Mrs. Daniels didn’t have all the answers, though. Nancy continued to struggle. Homework meant hours at night at the kitchen table, grinding, hoping for magic that would make the words have meaning. Her father was patient and insistent, hammering home the essentials of geometry and Stephen Crane. It was sometimes 11:00 p.m. by the time Nancy had finished her homework. Or it had finished her. None of this fazed her father. “Okay,” he’d say. “Get the book and do it again.”

  Starting in third grade, Nancy realized she could learn. The way she learned was different. “It isn’t one size fits all. Children are individuals,” Nancy says.

  Caring teachers could teach her. Nancy didn’t become a teacher because she intended to change lives. She remembered how hard school had been for her, and she simply wanted to make it easier for those she taught. Her aspirations found a perfect partner in Jillian, whose natural perk and sass worked well in a place where kids were still too young to judge someone harshly just because they didn’t quite look like they did. At Loveland Intermediate School, Jillian became known as The Mayor.

  I saw it up close. My odd sportswriter hours allowed me time to help in her classroom. When the class took breaks, to go to the library or for lunch or recess, I’d walk with Jillian through the halls. Every kid, every teacher and all of the administrators said hello to her. And she knew all of their names.

  “Hi, Allison.”

  “Hi, Jillian.”

  “Hi, Brandon.”

  “Hi, Jillian.”

  “How do you know everyone’s name?” I asked her.

  “They’re my friends,” Jillian said.

  The principal, Mr. Brooks, and her second-grade teacher, Mrs. Burke. Andy B and Andy J. Sarah and Sara, the secretaries in the office. The custodian. No one escaped Jillian’s recognition and acknowledgment. Occasionally, she would request a bathroom break. If she didn’t return right away, her teacher sent another student to look for her. Jillian would be in the gym, talking to Mr. McCoy, the phys ed teacher.

  Nancy Croskey may have been shy when she was young, but this kid who needed five minutes to ditch the womb never had that problem. Between classes, she’d walk the halls, singing that Britney Spears song about Oops and doing it again. She’d invite all of her friends to dance with her.

  Jillian’s issues were of intellect, not reticence. Her eagerness to learn was innate. It worked in tune with her desire to please. Jillian never wanted to let anyone down. From Mrs. Croskey, she got the help and extra support she needed. And in turn Mrs. Croskey observed in Jillian a spirit she’d always hoped to see in her students. She admired Jillian’s tenacity, and her ability to relate to other kids. Jillian celebrated her own successes, but no more than everyone else’s. She congratulated her classmates when they did well. She reassured them when they didn’t.

  Jillian never had a bad day. She might start out a little down, but it never lasted. Nancy said Jillian “had that spunkiness about her. She never said I can’t do that. She would try anything. She wanted to be a part of everything.”

  Not everything was easy. Homework was a nightly bang at a wall. The simplest of problems—two-plus-two, literally and figuratively—could be a mystery to Jillian. Sometimes all she had was her will, and sometimes that wasn’t enough.

  Jillian was usually the first to arrive in Room 36, straight from the school bus. She would heave her backpack—WHAM!!—onto a table “Homework not so good,” Jillian would say. “I bring a note from Dad.”

  Dad might have spent an hour the night before, searching for word definitions or the proper formula to solve a math problem. He might have had trouble with the instructions, or he might have found the clues in Jillian’s assignment book less than helpful. Dad might have been frustrated or annoyed or, more likely, a combination. Dad might have slung a few choice words not heard in church. Lots of nights Dad and Jillian were two people in darkness, searching for the damned flashlight.

  “My dad was mad,” Jillian would say. “I don’t want my dad to be mad at me. I try my hardest.”

  “Don’t worry about it,” Nancy would say. “We’ll find a better way to do it. And your dad’s not mad at you.”

  Sufficiently soothed, Jillian would rummage through her backpack, locate her lunch bag, and comment on what Kerry or I had packed for her. “Carrot sticks again,” she’d say.

  With help from classroom aide Mary Smethurst, Nancy taught Jillian. Spelling words, simple math, who lives in the White House. Nancy’s own experience told her that Jillian was a visual learner and suggested we use index cards for Jillian’s vocabulary words. On one card, the word; on another, its definition. Six or eight words a week, cards and definitions arrayed across the kitchen table. Jillian matched the words with their definitions.

  A few years earlier, we’d started playing a child’s version of Concentration. Kerry or I would pick eight pairs from a deck of cards, shuffle them, then place them facedown on the table, in four rows of four. We’d take turns with Jillian, trying to match the pairs. More often than not, Jillian would win. She learned visually, the same as her teacher had, three decades earlier.

  We also started to realize how Jillian’s presence had a positive impact on the other kids. They liked her. She was kind.

  One day, Nancy decided the class would bake a cake together. It combined cooking skills with math know-how as well as the importance of reading and understanding the directions. One of Jillian’s friends, a boy named Layton, had never cooked. He had been homeschooled, Nancy said. “He’d never so much as cracked an egg.” Well, that day Layton broke a few eggs. On the floor. He became frustrated, angry and was crying.

  “I show you,” Jillian said to him.

  “What?”

  “I show you.”

  Jillian cracked the egg on the side of the bowl. It slid into the cake mix. “Like that,” she said. “You try, Layton.”

  Nancy never eased up. She could be as stubborn as Jillian was. “I treated her the way I treated all the kids,” Nancy said. “I would introduce a unit and point out the key things I wanted her to get out of
it. I wanted her to know the three branches of government. I’d write them on the blackboard, I’d show her pictures.”

  The White House, the Capitol building, the Supreme Court.

  Nancy modified the work for Jillian. She increased the type size and included more picture clues. Jillian rewarded those efforts with a determination to get everything right. Nothing was too hard for her. Jillian would try everything. She would never say she couldn’t do something.

  All year, Nancy pushed gently, and Jillian responded. The collaboration produced wins on both sides. Nancy taught Jillian, and Jillian returned the favor. “How can that not affect you, when you have this fourth-grader who thinks nothing’s impossible?” Nancy said. “There are teachers that celebrate having kids like Jillian. I think you have to have a kid like Jillian in your classroom, to open your eyes to what’s possible.”

  I’d always believed teachers were noble people, and that teaching was a noble calling. Long hours, low pay, vital jobs. In a perfect world, teachers would be millionaires, and ballplayers would make $50,000 a year. Teachers would live in big houses and drive expensive cars. Ballplayers would buy their uniforms and pack their lunches in Tupperware. Our public education system rests on the hope that teachers enter the profession with an eye on making a difference. They mold minds and shape lives, one Dick and Jane reader at a time. To believe otherwise is to entrust our children to people who are in it for the summers off and the generous retirement plans.

  There was not a better child than Jillian to determine which ones were which.

  “When school again?” she’d ask, on a Friday.

  “Monday,” we’d answer.

  “When dat?”

  “After Saturday and Sunday.”

  “I love my school.”

  Jillian and Nancy have remained best friends, even as Jillian has gotten too old for Nancy’s classroom. They go shopping. They go out to eat. They talk on the phone. They exchange gifts on their birthdays. Lately, Nancy has advocated for Jillian to get her driver’s license, an almost unheard-of achievement for a person with Down syndrome. Not long ago, Nancy arrived at their dinner date with a copy of the Ohio driver’s manual.

  Nancy champions Jillian, and Jillian lifts up Nancy. They teach each other. “She brought everything to our relationship. I got more from it than she got from me. Jillian knows the important stuff,” Nancy said.

  The miracle of a teacher is that person’s ability to bend a life toward good. The reward for that is to know a person like Jillian. An education for each. Life itself.

  CHAPTER 10

  The Battleground of Dreams

  The special education law doesn’t say we’re supposed

  to provide an optimal education. It says we’re

  supposed to provide a free and

  appropriate education.

  —KEVIN BOYS, FORMER LOVELAND SCHOOLS

  SUPERINTENDENT

  The reasonable man adapts himself to the world.

  The unreasonable one persists in trying to

  adapt the world to himself.

  —GEORGE BERNARD SHAW

  Kevin Boys says the term “Public Law 94-142” “just rolls off the tongue.” That’s the formal name for IDEA, the Individuals with Disabilities Education Act. Congress passed the law right after Boys graduated from high school, and before he attended college with a career in public education his goal. Before this law was passed in 1975, one million kids with disabilities in the United States were denied any public education; four million more were segregated from their non-disabled peers, in a sort of out-of-sight, out-of-mind purgatory. In the land of the free, these kids wore chains. They had no chance.

  Thanks to IDEA, every child would be invited to the learning dance. It was a good deal in 1975 because it pulled back the curtain on the shamefully narrow vision we’d had for our citizens with disabilities. Its principles gave birth to the “Expect, Don’t Accept” way Kerry and I would approach Jillian’s life. Jillian would not be Jillian without IDEA. Because of it, Jillian would have a chance.

  Boys embraced the concept. “The vision in this country is that we educate all our kids,” he said. It was also a topic of debate whenever Loveland schools needed to pass a levy. Some parents who didn’t have kids with special needs questioned the district’s expenditures in that area. Boys usually responded by saying, “This is the greatest country on earth, because we have decided all children deserve an education.” It was more than just a good idea, Boys said. “It’s one of those moral imperatives that sets us apart as a country.”

  But this moral imperative got lost sometimes and was detoured into a school conference room, where it was fought over by two groups of people who supposedly shared the goal of getting a child educated. The problem was that each side came with its own notions of how that would happen. Often what Kerry and I wanted for Jillian differed so much from what the school people desired that it seemed as if we were speaking English and they were hearing Chinese.

  No parents of typical kids have to fight their school district for the right to have their children in a typical classroom. They don’t concern themselves with the stereotypes and perceptions some of their children’s teachers have of students with disabilities. But a quarter century after IDEA became law, we were still convincing school people of its worth. Imagine black Americans in 1989, 25 years after passage of the Civil Rights Act, fighting for a seat at the front of a public bus.

  Any child with disabilities who enters the school systems is given an Individualized Education Plan (IEP), which is a road map that describes what that child’s needs are. The IEP sets “reasonable” learning goals, and it states what the schools will do to attain them. Parents and school people design it together, agree on what is to be done, and how. In our case, the school people were to bring the dedication and skills while Kerry and I were to supply the support and the trust.

  Kumbayas all around. That’s the theory.

  In practice, an IEP meeting can feel like a divorce settlement hearing, without the consensus of a divorce. The two sides sit apart from each other, on opposite sides of a long, rectangular conference table in a room with no windows. On their side is an army of counselors, teachers, therapists, a school psychologist and administrators of all stripes. On our side was basically Kerry and I.

  Some of the people on the other side know Jillian. Most do not. Some see working with her as an opportunity to pursue a calling; some see Jillian as an itch they’d rather not scratch. But as long as Jillian was in this school, we were stuck with each other. I always wanted to pull out a photo of Jillian and put it on the table. I’d say, “This is who we’re here for today. Do you know Jillian? Have you met her? She loves school. Did you know that? She works hard. She isn’t a concept or a philosophy or a line item. She’s a child. Please see her as such, and educate her the way the law says you have to.”

  It wasn’t about money. Issues of funding didn’t come up until high school, when Jillian needed services the school couldn’t provide. It was about perceptions. Could Jillian learn? How much could she learn? Is the attempt worthwhile?

  Once teachers and aides became comfortable with Jillian, those questions were easily answered. Getting them to that point was the challenge. Don’t look at Jillian. See her.

  When you’re trying to get your child a “free and appropriate” education, perceptions are everything. They are the first line of resistance, the last line and everything in between. Educating the educators became central. This isn’t 1965. It’s not just a moral imperative. It’s the law.

  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 to
ld.” 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.