An Uncomplicated Life Read online

  “When I get on the elevator, I go to the second floor,” Jillian announced.

  “Yes,” I said.

  She also had a form that allowed her to use a digital recorder to tape the lectures. Jillian will ask another student to take notes for her. They will supplement Jillian’s own notes. Missy Jones will appoint a mentor to help Jillian with her work and getting socialized.

  She will take two classes, American History Since 1865 and University 101, an introduction to NKU all students must take. Between the mentor, the note taker, the tape recorder and Jillian’s own efforts, we will scale this newest hill. Sometimes at a sprint, sometimes while running in place. Always ready should the wheels come off.

  I don’t recall what I expected of that day specifically, or of the thousand or so since. You can have high expectations without being specific. General goals are flexible and more easily adjusted. I know I wanted the same for Jillian that day that I wanted for all of her first days: Do your best. Be your best. Seize the moment. Be Jillian.

  I was afraid, though. For every other milestone, we’d held Jillian’s hand, sometimes literally. If we weren’t at school, we were a ten-minute drive away. Public secondary school was a leap, but within a self-contained environment. One building, all day, cocooned by any number of teachers and peers, most of whom knew her, and she them. Jillian’s newest future was on 400 acres, with more than 40 buildings, filled with 13,000 undergrads. This big, sprawling room of possibility didn’t know my daughter.

  During the previous year, when she was a senior in high school, we drove Jillian to NKU four times, twice in February and twice more in April. She took an orientation tour of the campus, observed classes and met potential mentors. Twice during the summer, after Jillian had gotten her schedule, Kerry walked her to her classrooms.

  Kerry also made sure Jillian’s college experience included things a typical college student would need if she were going away to school. Jillian and Kerry went shopping for new comforters and pillows and towels, as if Jillian would be moving into a dorm room. The preparation had been thorough. Jillian was as ready for college as all of us could make her. What of the expectations?

  I had a vague notion of what I wanted college to be for her. I wasn’t silly enough to think Jillian would learn the way a typical college student would. She had graduated from high school mostly because she’d met all the requirements, not because she was as adept at her schoolwork as even the lowest-achieving typical child.

  College would accelerate that. Jillian would do what she’d done in high school: Learn at her pace, with help. Work as hard as anyone. She wouldn’t get a degree. She was registered as a non–degree-seeking student. But that didn’t mean she wouldn’t get an education. It didn’t mean she wouldn’t learn. I wanted Jillian to learn more how to belong, how to get along. It would be a social experiment as much as anything. I wanted her to cope with her disability in a wider world. I wanted her to sing her triumphs to a broader audience, one older and wiser enough to see her for who she was, not who she wasn’t.

  I wanted all this in the larger landscape beyond one building and seven bells a day. I wanted her to have friendships. Not superficial, patronizing acquaintances, but relationships, deep and impactful. I wanted people to feel better for having known her. I wanted them to understand that learning defies shapes and sizes and boundaries. We’re all lifetime learners.

  As much as I wanted Jillian to be taught, I wanted her to teach.

  There was an implied contract I wanted satisfied. I wanted NKU to be open-minded and big-hearted. I wanted Jillian embraced in a way she never was in high school, and I wanted it because it was the right and enlightened thing to do.

  I wanted her to come to the party bearing gifts, not just receiving them. I believed she would emerge more independent and more self-assured, in the way all adults should be. I wanted her time at NKU to be joyous and responsible and fulfilling. I wanted her to leave there purposeful and confident, and happy for the time she’d spent. I wanted everyone she met to feel the same.

  I wanted all that from her very first day. I had no idea if any of it would happen.

  There was a model, though. There was a precedent. A few years earlier, I had met Deb Hart. Hart is the director of education and transition at the Institute for Community Inclusion at UMass-Boston. That is a big title for someone who is basically a grassroots battler. Hart has spent 40 years plowing the hard and dry fields of Why-Not. She can tell you about perceptions and stereotypes and the act of moving a mountain. “It’s very hard for humans to change,” she says.

  Hart began her work in 1973, 16 years before Jillian was born, as a student teacher in the Massachusetts public schools. We forget now what it was like in 1973 to be someone like Jillian or Ryan. Deb Hart recalls it vividly. Much of her work involved changing hearts and minds, and not just those within the school and governmental bureaucracies. Parents also needed educating. “You have to have high expectations,” she said.

  PARENTS SHARED IN THE low expectations. Part of the problem was that nobody had ever told them their kids could learn. Nobody ever offered them a Why-Not. From the maternity ward to the public schools, parents had been told their kids with special needs could not achieve.

  Parents also had grown comfortable with the babysitting approach to special education. It’s safe and easy. Parents welcome the extra four years of high school that the law allows. They want the benefits that accrue from not working.

  “They’ve had to fight for benefits. The thought of something that’s going to mess with that” doesn’t appeal to them, Hart said. “To get Social Security benefits you have to show you can’t work. Our special education system has had the unintended consequence of enabling dependence. It encourages students with disabilities to be satisfied. Their families didn’t teach independent living skills, so special ed did.”

  Into this evolving landscape marched Jillian Daugherty. We arrived at the drop-off area, and Jillian looked up from her notes. “This is it, Dad,” she said. “I’m a little bit nervous, a little bit.”

  “Everybody’s nervous on their first day,” I said. “You have your phone and your directions?”

  “Yes, Dad.”

  “Lunch?”

  “Yep.”

  I told her everything would be fine. I said it more for my benefit than Jillian’s. Assuring Jillian that college would be fine was like lecturing a mouse on the possibilities in 300 pounds of cheese. Even if she was nervous, a little bit.

  “You’re good, right?” I asked. So lame.

  “Yes, Dad.”

  I squeezed her hand as she exited the car. “I can’t tell you how proud we are of you,” I say. “I love you very much. What a great day. Have fun.”

  “Okay, Dad,” Jillian says.

  I told her I’d wait in the lot a few minutes. “Call if you need help,” I said

  “Don’t worry ’bout it,” Jillian answered. “Your little girl is in college now.”

  And there she went.

  CHAPTER 23

  In the Swing

  I am not concerned that you have fallen—I am

  concerned that you arise.

  —ABRAHAM LINCOLN

  We picked her up at 2:30 p.m. in the same place I’d dropped her off. We didn’t know what to expect. We should have though. Just because Kerry and I had been fearful didn’t mean Jillian would be. And she wasn’t.

  “My history teacher, oh my God, he makes me laugh,” she said the minute she got in the backseat.

  “So, you had a good day?”

  “Yeah. You guys, it was the best,” Jillian said.

  That wasn’t exactly true. It was Jillian, spinning the moment to fit her personality.

  In her second class, the professor suggested a getting-to-know-you game. The students stood, declared their names, then offered an alliterative description of themselves.

  I’m Rob, and I’m romantic. I’m Melissa who’s money-conscious.

  Jillian jumped up at her ap
pointed moment. “I’m Jillian, and I like to eat.”

  “Okay, this is Jillian who likes to read,” the professor said, misunderstanding Jillian’s words.

  “She doesn’t understand me,” Jillian said of the professor later, at home. She seemed a little overwhelmed. “I don’t know anyone,” she said.

  “It was your first day, sweets,” I said. “Everybody feels a little weird their first day of college.” I meant what I said. I wasn’t sure I believed it in Jillian’s case. Her college experience would be as new to me as it was to her.

  Jillian spent a few hours after that writing manically in her journal. It was a written version of the Jillian Daugherty Show. There were names of people she met, what her professors said, how she navigated successfully from classroom to Student Union, back to classroom. And this, the last sentence of the entry: “My parents are proud of their college girl.”

  We were just getting warmed up.

  Calling what was happening to Jillian a “college experience” explains everything and nothing. No two are quite alike. When someone says he had a good experience in college, I picture fraternity debauchery and Southern Comfort at football games. Kerry laments that part of my existence. “I wouldn’t have liked you when you were in college,” she says.

  Where I went to school, it was not an expellable offense to set ablaze a rival frat’s grand piano and roll it down the center of the street. I attended an all-male college surrounded by five women’s colleges, each conveniently located within an hour’s drive. We misbehaved at our leisure on weekdays. On weekends, we took it seriously.

  Kerry went to school to get her degree. She was on the dance team. She was a straight-arrow student. I wouldn’t have liked her either when she was in college.

  We convened on the back deck after Jillian’s first day to share our impressions. I asked Kerry what she wanted Jillian to take from NKU. She said “a typical college experience.”

  I said if she got anywhere near a fraternity house, I would lock her in her room for four years straight.

  “I want her to take academic classes,” Kerry corrected. “I want her walking the campus, being part of a community.”

  We could have driven Jillian to class and killed time until she finished, then picked her up. Instead, we dropped her off in time for her 10:00 a.m. class and picked her up late in the afternoon. We encouraged her to discover the campus. To fill the in-between hours, Jillian had to be engaged and resourceful.

  She ate lunch in the Student Union, often going through the buffet line. She found a place with wireless and used her laptop to surf the Net. She took gym clothes and worked out in the Health Center. She needed to mind the time, to be where she needed to be. This is what Kerry meant by a “college experience.” Jillian was getting her wings. We wanted her to fly as far as she could.

  Some parents were incredulous that we would set Jillian free that way. They said we were setting her up to fail. They missed the point. We did want Jillian to fail.

  Not entirely, of course. Every day of that first year I worried that Jillian would become lost and confused and scared. I worried that someone on campus would take advantage of her kindness and innocence. Jillian believes everyone is good. That’s nice, in a conceptual kind of way, but scary on a wide-open campus of 13,000 students.

  But everyday, small-scale failure was okay.

  “That’s how we learn,” Kerry said that first day. “I hope Jillian gets lost. I want her to get lost. I want things to go wrong. Then I want her to figure them out and make them right.”

  We weren’t raising Jillian to stay with us. We were raising her to leave. Same as her brother. This was the next step.

  It turns out she did get lost. Missy Jones would e-mail Kerry occasionally to say that Jillian was in the wrong building. Missy offered to appoint a student to walk Jillian to class, but we said no. Jillian had a cell phone and a campus full of peers. She had her index cards. She could call someone or ask for help. She can cope. That’s part of why she’s there.

  And so she did. Soon enough, Jillian stopped getting lost. She never called Kerry or me for help. She had no escorts. She started enjoying her time on campus and away from us. She had her favorite places. She ate lunch with Ryan, she ran on the treadmill at the Health Center. She asked to be picked up later in the day. “I love my school,” she said daily.

  It changed her in other ways too. Jillian became more independent, which meant she needed us less. Her developmental delays had extended to her attitude. The Parents Are Gross era that most kids experience in intermediate school and high school came on for Jillian as a college student. “How was your day?” would be answered with “Good.”

  “What did you do? Tell me everything,” I might say. To which Jillian would respond, “Dad, I’m a college student now. I do lots of things.”

  Well, okay. We were put off by her responses but pleased at the independence they described.

  Jillian knows she isn’t like everyone else. But at school, she feels she is. She’s part of the universal to-and-from, the easy here-and-there that defines college life. She has a backpack, an iPod and a Mac. She has a purse and an All-Card for student activities and a key card that gets her into the gym. She uses the same books everyone else does. She’s a manager on the basketball team, too, a duty that occupies two hours a day, five days a week, not including games.

  There was another piece to the independence puzzle though. Jillian needed to learn to get from A to B without us. NKU was essentially a commuter school. Its typical students drove or took the bus to campus. Jillian had to learn to use public transportation.

  Transportation is freedom. Freedom is independence. Independence is what we’re working toward here. If Jillian and Ryan could manage public transportation, they could get places on their own. It would let them get to the grocery store, the mall, the movies—and eventually from their own apartment to the essentials and the pleasures of the day to day.

  We started this next grand experiment the second semester of Jillian’s second year at NKU. Initially, the plan was for Jillian to take the bus to NKU only. We’d pick her up after school. In the mornings, I would drive Jillian to the Metro stop closest to our house, getting her there in time to catch an 8:05 a.m. bus to downtown Cincinnati. From there, she would transfer to another bus that would get her to school.

  Step two involved the reverse: NKU to home.

  First, we made a dry run. I met Jillian and Ryan on campus on a blustery day in January.

  The Number 11 TANK (Transportation Authority of Northern Kentucky) bus leaves the NKU campus at 2:01 p.m. “Not 2:00,” I tell Ryan and Jillian. “Not 2:02.” The inference was, Be on time. Not as freighted with worldly concerns as the rest of us, Ryan and Jillian tend to float. They don’t take straight lines to places. They prefer the winding road. The scenery’s better.

  “If you’re late, the bus leaves without you.”

  “Yes, sir,” Ryan says.

  This was a big day in their lives. It was heavy with symbolism. Get up in the morning, get on the bus. Go to work. Produce. Enter the land of the meaningful. Feel you belong and act on the feeling. Get on the bus.

  I tell Jillian and Ryan to be at the bus stop at 1:50 p.m. They get there at 1:50 p.m., fresh from class, holding hands, smiling, ready. They want to know everything. Will it stop right here? Do I need money? How do I know when I’m finished? That’s what Jillian asked: “How do I know when I’m finished?”

  “Listen to me,” I say.

  “Yes, sir,” Ryan says.

  Jillian has a fistful of bus schedules and her student ID that will allow her to ride for free on the first leg of the journey, the eight miles from NKU to downtown Cincinnati. For the second leg, which will cost $2.65, she has packed a Zip-Loc sandwich bag full of quarters. The bag must hold 40 quarters.

  I tell Ryan the first bus is free with his ID card. “I have this,” he says, fishing through his wallet. He pulls out a card that is good for a free bowl of soup. “Keep l
ooking,” I say.

  I will ride with them. I will tell them when to get off the first bus and where to get on and off the second bus. I’ll tell them what it costs. I’ll help them to slide the dollar bills into the money box: “Flat. President Washington’s head pointing this way, like the diagram.”

  “See?”

  “Yes, sir.”

  I will show them the marquee attached to the ceiling at the front of the bus. It runs continuously, a stream of information, like a sports crawl across the bottom of an ESPN channel: Bus name, bus destination, time of day. I will tell them when the bus is scheduled to arrive at its destination. “Look at the time up there,” I say to them. “When that time gets close to the time you’re supposed to get off, start paying attention.”

  They nod.

  I show Ryan the cord above his head. “You pull that when you want to get off,” I say.

  “Got it,” he says.

  The first bus arrives precisely at 2:01 p.m. “See?” I say. “Right on time. You guys need to be prompt when you take the bus. Do you know what prompt means?”

  “I think so,” Jillian says. “What?”

  “It means be here exactly when you’re supposed to be,” I say.

  “Exactly,” says Jillian.

  Ryan says, “Yes, sir.”

  The inside of a city bus isn’t the likeliest place to discover wonder or contentment. It’s all about poker faces and gum beneath the seats. Unless you are Jillian and Ryan, who find wonder in just about everything. The bus moves slowly, circuitously and with frequent stops. Ryan and Jillian can relate. Ryan reads aloud the sign that hangs above the seats closest to the doors: “Please allow seniors and persons with disabilities to use these seats when requested.”