An Uncomplicated Life Page 9

  “Jillian,” said Officer Barnes. “I need to get you back to school, honey.”

  “No,” Jillian said.

  “C’mon, Jillian. Your mom’s worried about you.”

  “I can’t get in the car with you. My mom told me never ride with strangers.”

  Officer Barnes wasn’t a stranger. Jillian knew him well. Jillian knew everybody well.

  Fred finally convinced Jillian to climb aboard.

  Jillian didn’t limit her explorations to the home zip code. We spent a vacation one summer in a cottage on a pond, on Cape Cod. The house was secluded, right on the water. Maybe a half mile away, up a dirt road lined with pine trees, was the main road, a busy two-lane. There was a convenience store across the two-lane.

  One fine very early morning, as Kerry, Kelly and I slept, Jillian arose with the idea that we needed doughnuts, and we needed them now. She knew just where to find them because she and Kelly had walked to the store the day before. She left with a dime and a nickel in her pocket. Nobody heard her.

  We flew into mass panic when we woke up. Jillian was at the store when we found her, trying to negotiate down the price of a dozen doughnuts. Apparently, we’d gone from overly protective parents to parents whose daughter should have become a ward of the state. She’d have been in better hands.

  These were times when Jillian’s disability earned her a pass. Another child found tooling up the road in someone else’s toy Jeep might have faced more severe consequences. A typical eight-year-old finding herself uninvited in a strange house, face-to-torso with a naked guy, might have lost dessert privileges or something. Probably, in our ever-quest for Jillian to be seen as typical, we should have punished her accordingly.

  During the scary times, we let our hearts skip a beat, then we laughed. We laughed in the way other parents would laugh in the retelling of an incident that might have occurred several years earlier. We didn’t tolerate Jillian’s occasional excursions off the ranch. We didn’t condone thievery or breaking and entering. She just didn’t suffer the consequences Kelly would have.

  Kids are kids. Innocence doesn’t discriminate.

  Jillian learned in school that you dial 9-1-1 if there’s an emergency. In one particular instance, her emergency was that she needed some chocolate milk. I was out of town, thank God. Kerry was extremely surprised to see two police cars, lights flashing, in the driveway.

  “Jillia-n-n-n!”

  Afterward, we couldn’t figure what she’d been most sorry about: That she’d called 9-1-1 for a frivolous reason. Or that the officers didn’t have her chocolate milk.

  Jillian also had a lemonade stand. On a day when no one was buying, she drew letters on cut-up pieces of notebook paper and put them in an envelope. Then she went to the Whites’ house (down the drive, on the right) and offered them the whole alphabet, at ten cents a letter.

  Other life events prompted a more serious approach. Jillian hit puberty at age 11, in fourth grade. She had her first period on Christmas Day. This was one area in which Jillian was not delayed. When she noticed the discharge, she screamed for Kerry to come upstairs. “I think I having a baby,” Jillian said.

  Kerry told her what was happening and what it meant, the first of many talks regarding womanhood and the responsibility it entailed. I was delightedly out of that loop. I’d bought Kelly a jock strap, way back, when such accoutrements still existed. That was the extent of my involvement in matters that make men itch.

  “You’re a woman now,” Kerry told Jillian.

  A few days later, they went to a restaurant for lunch. Being small in stature, Jillian was often given a children’s menu without being asked. But this day, the server did ask.

  “And would you be needing a children’s menu?”

  “No,” Jillian said. “I’m a woman now.”

  After Christmas break, Jillian returned to school with what she called her “woman thing”—a sanitary pad—packed in a lunch bag. One day, she asked to go to the restroom, knowing she needed to change her pad. “I have a ’mergency,” she’d announced.

  Problem was, she’d left it in the classroom. After several minutes, she hadn’t returned. An anxious Nancy Croskey went to the bathroom, seeking Jillian.

  “You okay, Jillian?” she asked.

  “Yeah,” Jillian answered. “But I need my pad.”

  She was developing her own personality. It was a unique set of traits that reinforced the fact that Jillian was far more like us than not. Like her mom, Jillian loved to go out to eat. If restaurants were the New World, Kerry would be Columbus. We were running errands one Saturday at close to lunchtime when the subject of food came up.

  “McDonald’s,” Jillian said.

  “We’re not going out to eat,” I said.

  “Applebee’s,” Jillian said. I told her we had food at home.

  “Chili’s,” Jillian said. This was a child who was “cognitively delayed”?

  “Burger King. Arby’s, Frisch’s, Wendy’s.” She proceeded to name every restaurant that had a kitchen. Free verse, with a drive-thru. “Outback, Johnny Rocket’s, Steak-n-Shake, Penn Station, Domino’s, Papa John’s!”

  She was very proud of herself.

  Sometimes, we didn’t know quite what to make of Jillian’s progress. In ninth grade, a classmate had been giving her a hard time. Jillian almost never encountered meanness at school. Her classmates were universally kind, if mostly distant. But this time, one boy was not.

  After a while, Jillian decided she’d heard enough. She passed the boy a note that the teacher intercepted.

  “You’re a deck,” she’d written.

  Now, typically, a parent wouldn’t greet that with a smile, let alone the big laugh I let out when I heard what had happened. We’re pretty sure Jillian wasn’t calling the kid “a floor-like surface wholly or partially occupying one level of a hull, superstructure, or deckhouse.” She was referring to a portion of his anatomy.

  We were upset about that, sort of. We know high school kids can’t go around calling each other decks. But we were darned proud that Jillian was able to offer it in a complete and cogent (if misspelled) thought. And the thought she’d had was entirely “typical” for a ninth-grader.

  Around that time, Jillian visited Kerry’s sister in Baltimore. Janis had been recently divorced, which saddened Jillian. “I love my uncle Marc,” she said, when she was told about the breakup. Jillian’s way of consoling Janis was to offer to help make dinner. “My world-famous pasta salad” was to be Jillian’s contribution.

  Jan had company for dinner that night. “You can make this if you have a husband, or if you don’t,” Jillian announced.

  The house Jan lived in was for sale at the time, and as Janis showed the place to a prospective buyer, Jillian said, “She used to have a husband, but not anymore.” To which the bemused visitor responded, “Been there, honey.”

  Jillian’s ability to provoke laughter was entirely without guile. The innocence of the acts gave the comedy a spontaneous purity that underscored its authenticity. It wasn’t a performance. Jillian didn’t try to make us laugh. She was just Jillian. Her eagerness to stretch came with its own challenges. It would also expand her choices, in all the ways Kerry and I had hoped.

  Meantime, we send our sincerest apologies to The Deck, and to the owner of the Jeep. And to John Slattery. Jillian didn’t mean anything by it. Really.

  CHAPTER 9

  Nancy

  Education is not preparation for life.

  Education is life itself.

  —JOHN DEWEY

  Jillian’s earliest sessions with Martha showed us how eager she was to learn. Jillian wanted to keep up. Once she enrolled in school, the trick was finding teachers who would mine that eagerness.

  When Jillian was two years old, Kerry enrolled her in sort of a pre-preschool that was for kids with special needs. It offered the rudimentaries—sitting up straight, holding silverware, mixing with peers—but more than anything the school showed us what we did not wan
t for Jillian: A school strictly for special-needs children. After that, Jillian spent the next three years in typical preschool, and she loved it. She’d be the first one up in the morning, getting herself ready to go. Pencils packed, scissors stowed, teachers’ names memorized. “Today, I see Miss Jackie,” she’d say. Her brother thought she was strange.

  Jillian was able to keep up for those three years. She adapted easily. In the world of crayons and paste, aptitude wasn’t a concern. Jillian knew what everyone else knew: Letters. Numbers. Colors. How to get along. She got along well. She loved being there. We were convinced that Jillian and teachers would be the perfect match of energy and idealism. Armed with this pleasant naïveté, we enrolled her in kindergarten when she was almost six years old.

  The year before, Kerry had met with the school psychologist at Loveland Elementary, the local public grade school. She wanted to make sure the proper authorities knew Jillian was arriving next September and that a support staff understood that they would need to set aside extra time to provide Jillian with the extra help she would require. At least that was the plan. Immediately we faced resistance.

  Loveland Elementary had what it called a “unit classroom” set up specifically for special-needs students. It was in the windowless basement of the school, segregated metaphorically and otherwise. “The regular-ed teacher might not want Jillian,” an administrator said.

  “You tell the regular-ed teacher it’s the law,” Kerry shot back. She’d attended workshops on this very topic for a few years. Kerry knew what she knew.

  This was the first time we demanded that Jillian be fully included in regular education classrooms. That’s school-speak for, “We want our daughter to be given the same schooling, in the same setting, as every other kid. If you resist, we’ll whack you with the rule book.”

  We wanted Jillian to grow as much socially as academically. Our belief was that she needed to have typical peers as her guides, and through them she would learn the classroom do’s and don’t’s. We also wanted her to get as much book learning as she could. We didn’t see the point of putting her in a segregated class, where much of the modeling she’d be receiving was of behaviors we didn’t want. Children with Down syndrome don’t develop socially as quickly as typical kids. Jillian was already doing well socially. We didn’t want to slow that development by having her in a segregated classroom.

  Kids watch each other. How they behave, what they wear, what movies and music they like. Peer influence is more powerful than anything a parent can offer. If you want kids with disabilities to achieve beyond the norm, why would you put them in a segregated classroom, only with other kids with disabilities? We didn’t know why anyone would want that. This was 1995, not 1955.

  In 1975, Congress passed the Individuals with Disabilities Education Act (IDEA). It was a monumental civil rights triumph for kids who wanted to be in typical classrooms, learning and socializing with their typical peers. What Brown v. Board of Education had done for African Americans, IDEA established for children with disabilities. IDEA made it law that children with disabilities must receive a “free and appropriate” education in the “least restrictive environment,” and that guides—known as Individualized Education Plans—be developed to meet their specific needs. Jillian began her first year of kindergarten with an IEP.

  And that was the beginning of our grand experiment.

  The first day of first grade.

  Charlene Green was Jillian’s kindergarten teacher entirely by chance. The second of Jillian’s guardian angels had appeared. We knew of her reputation as a stern, respected educator whose emphasis on reading fit perfectly with what we wanted for our daughter. Charlene didn’t know Jillian. In fact, she’d taught for 29 years in the Loveland school system and had never had a child with Down syndrome.

  Charlene wanted Jillian in her classroom, though. She was intrigued and concerned. She had no idea how it might turn out. Neither did we. Preschool had been half a day, and though learning was involved, it wasn’t stressed. The social aspect was more important. Kindergarten would be different. Kids would begin in earnest the lifelong learning process. Reading, writing, adding and subtracting. How would Jillian do?

  Kerry met with Charlene shortly before school started and came away elated. This, she said, was a teacher whose philosophy was aligned with ours. Jillian’s exuberance and fearlessness were going to find the ideal task master. Charlene would teach the lion. And tame her a little.

  “You’re in my room, you will be reading before you leave,” Charlene told Kerry. “Jillian will be a student, same as any other child in my classroom. I’m going to teach her the same way I teach everyone else. I will expect her to achieve to her potential.”

  Amen. Jillian had a teacher who would respect what she was capable of doing. That’s all we’d ever ask. It’s all we ever wanted. Allowances would be made. Jillian would have an aide. But expectations would abide. In Charlene Green’s kindergarten class, Jillian would learn the proper way to hold a pencil and a pair of scissors. She would improve upon what she’d gathered in preschool. Most essentially, she would begin to learn to read.

  Charlene produced for Jillian the building blocks of reading: “There is just one way to teach children to read,” she explained. “You know your letters, you know your sounds. You know your phonetic rules. And you repeat them, until you get it right.”

  This was all vital. But equally important was the attitude with which Charlene made it happen. No patronizing, no short cuts. Expect, don’t accept.

  After a year in Charlene’s class, Jillian was close to reading—close enough that Charlene recommended Jillian spend another year in her room. The school administrators were not receptive to this. They didn’t say it. But it was clear to us they thought “flunking” Jillian would look bad on their record.

  What they said was they were worried that going forward Jillian would be too old for her grade level. She’d be an eight-year-old in first grade. Too advanced physically, they said. This was so obviously contrived that when we met to discuss it, I couldn’t help myself and said: “So your biggest fear in Jillian’s education is that she will have breasts before anyone else.”

  Jillian got a second year in Charlene’s class, and she entered first grade knowing how to read.

  Those first few years of school were not a struggle—for us or for Jillian. We nagged on the edge of being overly insistent with everyone who had a hand in Jillian’s education. There were school people who didn’t welcome our presence; at least that was how we felt. No one was overtly resistant, or even unkind. They were just glad when Jillian advanced from their building and into the next one. Generally, we got along, mostly through the benevolence of the teachers themselves.

  In elementary school, the kids don’t switch classes. The teachers have the same group of 25 or 30 for the whole year. They get to know their students. This was especially important with Jillian. Her teachers could view her as a special kid, not just a kid with special needs. Perception is reality. Jillian was always good at making positive perceptions.

  IN MARCH 1990, FIVE months after Jillian’s birth, I wrote a cover story about her for Cincinnati magazine. I’d met the editor at a civic function. She’d heard about Jillian. Everybody had heard about Jillian. Cincinnati is a small place. After the usual awkward expressions of condolence, congratulation and encouragement, the editor asked if I’d explain to her readers what it “really” felt like to be the father a child with Down syndrome.

  I wrote about athletes for a living. Their efforts are uncomplicated and easily described. They win, they lose, they make lots of money. This was different. It was raw and personal. I didn’t hesitate to accept the assignment. I did wonder what I’d say, and how I’d say it. My first thought when asked what it “really” felt like was Compared to what? So I just said it. I wrote 3,000 words in half a day. They roared like the last wild river. The story I offered was a full-blown catharsis. It was tears on a page:

  We had been denied t
he most passionate event of life, the birth of a healthy child. Jillian is a joy, a treasure, a miracle. And she breaks our hearts every day.

  Right after Jillian’s birth, what I saw as a wound was too raw for me to assess reasonably. The self-woe flowed:

  Jillian is only (five) months old. I can’t help feeling her best steps were stolen away from her, before she ever got to the dance . . .

  I wonder if, some enchanted evening, my daughter will know the smell of a boyfriend’s cologne . . .

  Is the fog lifting, or simply gathering silently for a lifetime encore?

  The article ended on a hopeful note—“We want her to be productive, respected and fulfilled. We don’t care if she can be a singer. We just want her to be able to sing”—even though its overall tone reflected an abiding sadness.

  One of the people who read Cincinnati magazine and saw the cover with Kerry, me, and a big-eyed baby in a pink sleeper, staring right at the camera, was Nancy Croskey. It was a happy coincidence that Nancy taught fourth grade in our school district. The day she read the magazine story she became determined to have Jillian in her class. She saw something in that little girl. Maybe it was a memory of how hard her own early school experience had been. Maybe she remembered a caring teacher from her own childhood who had helped her get through some bad times. Perhaps Nancy Croskey talked to Charlene Green. Regardless, Nancy embraced Jillian as no one had before.

  Nancy had been teaching for more than two decades when a tiny, enthusiastic child walked into her classroom, lugging a backpack that hung from her shoulders to the backs of her knees.

  “I’m Jillian,” Jillian announced.

  “I know,” Nancy said.

  What Nancy didn’t know then was that everything she’d experienced in her life before that moment had prepared her for what was about to happen in Room 36 at Loveland Elementary School. Nancy wanted to be a teacher who makes a difference? Well, here was your difference—all three feet eight inches of her, standing in your doorway, carrying a house on her back.