An Uncomplicated Life Read online

  By extension: Should we stop pushing so forcefully for further classroom education? Maybe Jillian’s future should not include college. A vocational program might be more fitting. We want to prepare her for a life of independence. Should that include higher education or job training?

  My old familiar doubts came calling: Whose dream is it?

  This is what I wonder as Ellen and Kerry face off with the school people. Then I think of Jillian. How hard she works. “One more time,” she’ll say as we slog through history questions at 10:00 p.m. on a school night. Why not give Jillian the opportunity she has earned?

  I’m not going to limit her. Why should I allow anyone else to?

  “Can I say something?” I ask.

  “Go right ahead,” the special-ed director says.

  My passion is always new, even as my words are rote. I go on for several minutes: Look at Jillian, don’t see her . . . she wants to learn . . . she wants to please you . . . an opportunity, not a burden . . . she’ll help you as much as you help her. I close with, “Those of you who look at Jillian as someone with Down syndrome aren’t seeing the child who can help make you a better teacher and person, while you give her the education to which she’s legally entitled.”

  “Can we all turn to page seven of the IEP?” the special-ed director asks.

  “You might even be glad when Jillian leaves here,” I continue. “But we’re not the last family you’re going to have to deal with in the coming years. We’re the first. So you might as well figure out something that works for everyone.”

  “Thank you, Mr. Daugherty,” the special-ed guy says. His face betrays no emotion. He asks if we could all turn the page. He means the IEP summary.

  The law forced the school district to pay for services it might not have had the money for. “I’m a teacher,” Kerry said then. “I understood there are only so many minutes in a day, and that school districts only have so much money.”

  If the fight were just about money, we’d have closed our mouths and opened our wallets. We could afford the $40,000, or whatever the cost ended up being. At its core, the struggle was about perception.

  Kevin Boys cast an accountant’s eye at the proceedings. Boys felt compassion for Jillian. But not so much that he wouldn’t fight us to save money. As he admitted a few years after Jillian graduated from high school, “It boils down to money and how you spend it. Nobody’s going to tell you that. Not having money is not an acceptable reason not to do something.

  “When that law was originally passed in the ’70s, there was an expectation it would be funded at a certain level. That hasn’t happened. What happens is, the local school district picks up the rest. That’s a financial challenge. As a school superintendent, I champion offering optimal programs for our kids. But that’s not my job. My job is to provide a good education for our kids, given the resources we have.

  “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. If I want to provide optimal education for my son, it’d look a lot different and cost a lot more.

  “There’s the expectation you provide the optimal education. You don’t have the resources.”

  “You’re saying we were unrealistic in what we expected for Jillian,” I said to Boys.

  “A lot of parents are unrealistic,” Boys said.

  This is what happens when a family’s dreams collide head-on with a school system’s priorities.

  During Jillian’s junior year, Kevin Boys made an entirely unexpected appearance in the gym, where Kerry was teaching a class. We’d threatened due process, yet again.

  Boys handed her an envelope. “I’d rather do this than pay for lawyers,” he said. The envelope contained a signed memorandum, stating that the district would pay for Jillian’s time at Langsford for the rest of that year.

  We were happy, but not elated. Happy that Jillian would at least get the chance to be a better reader. Less than elated that we’d spent so long working at cross-purposes, at Jillian’s expense. I still wonder if my competitiveness served my daughter or hindered her. I wanted the reading program. I also wanted to win.

  Times change. Hopefully, we progress. What worked 30 years ago doesn’t work now. Some of Jillian’s biggest wins came at school. Also, some of our most enduring sadness. It depended on who was looking, and who was seeing.

  Meantime, the seemingly endless struggle produced repercussions beyond the IEP conference room. In the spring of Jillian’s junior year, the principal tried to fire my wife.

  Not fire, exactly. Kerry was offered a new one-year contract. In the 11 years she’d been teaching Health and Physical Education at the high school, Kerry always had worked with three-year deals. This was standard for any established teacher. The one-year offer was a shot across Kerry’s bow.

  The message was clear: You have caused trouble around here. Here’s your new contract. Enjoy. It was clumsy and vengeful, and we had been expecting it. In our effort to get Jillian an education, Kerry and I became a general nuisance to those who ran the school district. They didn’t like us. They wanted us to go away. That’s how Kerry had ended up in the principal’s office, summoned like a sophomore who’d set a bathroom trash can on fire.

  “Come up and see me at the end of the day,” the principal said.

  Kerry went. “We’re reducing you to a one-year contract,” the principal told her.

  Kerry asked why. The principal cited an instance in which Kerry hadn’t supervised the locker room carefully enough and, because of that, money was taken from a student’s gym locker. She said that students “didn’t seem happy” coming to Kerry’s Phys Ed class. She said Kerry “didn’t socialize enough” with the other teachers.

  Well, okay. Kerry responded that she had been teaching a class when the money was stolen, and she couldn’t be watching the locker room at the same time. She didn’t understand what the principal meant by unhappy kids. She said it was hard to socialize with teachers she’d criticized during IEP meetings. It was uncomfortable for everyone.

  And really, since when is not socializing a reason to have a contract shortened?

  “This is about Jillian, isn’t it?” Kerry asked the principal.

  “That’s just the attitude I’m talking about,” the principal said.

  Apparently, fighting for your child’s education is having an “attitude.”

  The principal denied it had anything to do with Jillian. That was laughable.

  Kerry contacted her union representative the same day the principal offered the one-year contract, and shortly thereafter, she and the rep met with the principal, armed with ten years of excellent teacher evaluations. Nothing changed. The rep filed a grievance on Kerry’s behalf, against the principal, and another against the district. Kevin Boys backed his principal. A mediator was summoned. Our fight with Loveland Schools rolled on, in a different direction. It wasn’t just the aides and teachers who occasionally looked at Jillian and saw problems and not opportunities.

  The previous October, Kerry and I had met with the principal in her office, in yet another attempt at locating the elusive, happy middle between learning and learning under budget. It didn’t work, of course. The school was in business to save money, not to spend it on Jillian. Due process comes into play when parents sue the school district for not following the law, as it applies to providing an education to a student with a disability. The cases can be long and costly. Ellen Mavriplis, Ryan’s mother and founder of Inclusion Advocates, says schools win these cases more often than not.

  That said, districts often prefer to settle if the cases against them are solid, as was the case with Jillian.

  Money was an issue, but mainly as a symbol: The school district felt Jillian wasn’t worth the expense. Jillian was an inconvenience. Now Kerry was, too. It was during those times that frustration assumed in me a living presence. It became as much a part of me as my hands and feet.

  “You’ve
failed my daughter,” I told the principal on that October day. I looked her dead in the eye, with all the polite malice I could muster. Diplomacy isn’t my best trait, and after years of IEP meetings, I wasn’t in a congenial mood. So I said it again, in case she’d missed it the first time.

  You’ve failed my daughter.

  If that hit the principal the same way “Jillian can’t learn”—uttered by a speech therapist at an IEP meeting Jillian’s junior year—had hit me, well, there you go.

  Later, after I’d left the building, the principal looked at Kerry from across her desk. “Tell him not to say that,” she said. A school levy loomed on the November ballot. Election Day was less than a month away.

  Everyone at Loveland High School knew I worked at the Cincinnati Enquirer. But the school people didn’t know me well enough to know I’d never use my position to further a personal cause. I had opinions, but I didn’t offer them from the bully pulpit. I would never editorialize publicly on their shortcomings, but I would tell someone who might. The levy was critical. No one connected with the schools wanted bad publicity.

  “I’m not telling him anything,” Kerry replied.

  Saying what I did that day didn’t come easily. Jillian attended school there. It was where Kerry drew a paycheck. But even more difficult was understanding why I needed to say anything at all. This was 2007. IDEA was 32 years old. Middle-aged. It should have evolved from an ideal to a policy to a respected truth.

  It’s hard being Daniel Boone. We heard often from other parents of children with disabilities who hadn’t stomped their feet. They were grateful and slightly amazed. Compared to earlier generations of parents of kids with disabilities, Kerry and I were moving heaven and earth. And compared with earlier years, Loveland High was doing some of the same, even though it wasn’t enough. Parents praised our trail blazing. We appreciated their support. Sometimes, we just wanted to take off our backpacks and boots and rub the soreness.

  Kerry and her union representative would meet again with the principal and other school officials regarding her stunted contract. Soon enough, the school people saw they didn’t have a case because Kerry’s record had been exemplary. The charges were heavy-handed coercion.

  Kerry agreed to a one-year deal, with a two-year extension.

  The principal received a formal reprimand from the school district, and Kerry’s case was brought up during the next labor negotiation between teachers and the district. The result was a ruling that a school principal could no longer reduce the length of a teacher’s contract without proper documentation.

  The union rep asked Kerry if she’d like a written apology from the principal, but she declined. It wasn’t necessary. Everyone knew who was right. And who wasn’t.

  All because of a disagreement over how an eager student should be educated. By the middle of Jillian’s senior year, Kerry and I decided Jillian’s reading progress had leveled off. We informed the school that we’d no longer need the extra services at the Langsford Center. We thanked everyone for what they’d done.

  CHAPTER 18

  Belonging

  She genuinely cares about other people.

  —EVAN STANLEY

  The irony was, Jillian was doing beautifully. She had no idea her trailblazing parents were rubbing their feet. Jillian would not have understood anyway. She had neither the heart nor the intellect to question people’s best intentions. The thought that her teachers would be anything less than entirely enthusiastic on her behalf wouldn’t register with her.

  One day after school in her sophomore year, Jillian announced she had to be back at school at 5:00 p.m.

  “What for?” Kerry asked.

  “I have my dance team tryouts.”

  This was the first we’d heard about this. Jillian had seen the sign-up sheet and added her name. She’d never been on a team. She’d never danced publicly. Most of Jillian’s dancing was done in her room, during the Jillian Daugherty Show.

  She auditioned for the junior varsity team. The girls entertained during half-time at the JV basketball games. They wore skimpy outfits that made their grandparents blush. They danced to rock and hip-hop that was played over a scratchy PA system, minded by students who sometimes forgot to start the music on time, or at all.

  Kerry recruited a varsity dancer to perform the JV routine, which Kerry videotaped. She gave the video to Jillian. We moved a full-length mirror into the basement. Jillian reprised the JD Show, this time to music. She spent hours practicing. Her two-wheeler mind-set was at work again, this time indoors. Early in the tryouts, the JV coach had suggested to Kerry that Jillian could be on the team—as the student charged with cuing the music. Kerry politely said that Jillian was either good enough to dance or she wouldn’t be on the team.

  As it was, there were no cuts, so Jillian made the team. Was she good enough?

  Mostly, yes. She was coordinated; she had rhythm. Had Jillian been a typical kid, she’d have been an athlete. It’s true there were times during the dance team’s routines when she was a fraction of a second behind. If you looked only at Jillian, you’d notice. No parents looked only at Jillian, except Jillian’s parents. They were all busy looking at their own children.

  It didn’t matter to them if the execution was jittery. Their kids were great.

  Jillian worked tirelessly at learning the routines. She would come home, grab a snack and head to the basement. “I do my dance practice now.” She’d start the music and square up to the mirror. She’d dance.

  If I had to hear Aerosmith and Run-DMC do “Walk This Way” one more time, I was going to personally kidnap Steven Tyler and make him listen to Pat Boone.

  Hour after hour, thumping around the basement room. Just gimme a kiss . . .

  Jillian wasn’t as good as the best dancers, and she never would have made the varsity team. But she was fearless, and she wasn’t at all self-conscious. She danced for joy.

  We would not have allowed Jillian to dance if we didn’t know she could keep up. It wouldn’t have been fair to her or to her teammates. The last thing we wanted as parents was to put Jillian in a position where she embarrassed herself. The dance had to look good. If it didn’t, and Jillian was the reason, she’d ruin it for everyone. The dance never looked bad.

  Years later, in college, Jillian would say, “I really miss my dance team.” She’d ask if she could try out for her college’s team. We said no. We told her she wasn’t good enough. Sometimes, even parents wanting more than anything to let their daughter define herself had to step in and do some of the defining.

  Jillian’s dance teammates treated her like the rest of her typical peers did: Arm’s-length pleasant. They didn’t mind having her on the team. But I don’t think they relished it either. They included her in team functions; pre-game dinners, sign-painting, that sort of thing. After practice or games, they went their ways, and Jillian went home. We didn’t know if the girls hung out together after practice. We never asked.

  Jillian loved to dance though. She did it well enough to belong.

  That was her way of participating in extracurriculars. Jillian’s will and joy always overrode any thoughts of not being more fully included by her teammates.

  Jillian also set Loveland High School records for weightlifting. The sight of this four-foot-eight, 100-pound child deadlifting barbells was amusing and bizarre. She loved lifting—and she especially loved being around lots of boys. She liked wearing sweats, T-shirts and a backward baseball cap. She also got a kick out of the plaque on the weight room wall that proved she held school records for squat, bench press and deadlift. Just because there weren’t a lot of 100-pound people lifting heavy weights didn’t make Jillian think her records were anything less than awesome.

  She liked athletes and referred to her favorites as her “homeys.” Bobby Capobianco, a six-foot-seven center who would go on to play college ball at Indiana, and then Valparaiso, was a homey. Brian Wozniak, a football player at Loveland and then at the University of Wisconsin, was a home
y. And then there was Evan Stanley.

  Evan wasn’t just a homey. In Jillian’s orbit, he was her “home dog,” a name so special she reserved it only for him. Before school started in the mornings, Jillian would wait for her home dog at the back entrance to the school, the entrance that was closest to the student parking lot. That’s where they’d meet and walk to class.

  I asked Jillian once what they talked about, and she said, “Our lives.”

  As the parent of a child with Down syndrome, I’ve heard lots of people tell me things like, “She’s happy all the time.” “She enjoys every day.” “She’s positive.” “She makes me laugh.” I’ve heard these descriptions so often they can come off as patronizing, depending on who’s doing the praising. It can often sound saccharine and thin. What a nice little girl she is. It makes Jillian sound like a golden retriever.

  Evan said a lot of those things too, but he wasn’t patronizing her. He had known Jillian since they were in grade school together. Jillian had made sure they were more than just acquaintances by the time they were seniors at Loveland High. Jillian had lots of acquaintances. Just about every kid in school, basically. But Evan was really her friend, and she was his. He got something from the transaction. His other friends were quick to talk about themselves; Jillian wanted to talk about Evan: What’s new? How are things at basketball practice? How are your mom and dad? How’s your girlfriend?

  Evan saw their morning walk to class as the highlight of his day because Jillian was selfless, in a setting not known for it. “It’s refreshing to have someone like that in your life. She genuinely cares about other people,” Evan said.

  To Evan, Jillian was J-Dog. To Jillian, Evan was her link to typical. She never mentioned her disability, let alone lamented it. But she knew its shackles. In the court of peer opinion, she didn’t win a lot, but when she did, she soaked it in. She was never more alive than when she was with Evan and her homeys.

  Some of Jillian’s best high school memories involved her support of her guys. She’d ask for a hall pass to use the girl’s room, but instead go to the attendance office, where home dog Evan and homey Bobby worked. At the Loveland home basketball games, she’d make us get there early so she could be sure she’d get a seat in the first row, behind the team bench, so she could scream encouragement while these guys played. She made Kerry and me sit deep in the bleachers, far away and anonymous.