An Uncomplicated Life Read online

  Bobby was the star. Brian played a lot. Evan was, as Jillian put it, “my benchwarmer guy.” That didn’t stop her from lobbying the coach to play him. “Coach, coach! Put in Evan! He’s my dog!”

  That’s when Evan would turn from his well-worn spot on the bench and shoot his biggest fan a look that shouted, “Jillian, you’re going to get me in trouble.”

  Jillian’s penchant for hanging with athletes, and modeling their behavior and tastes in music and fashion, endured into her college years. Her idea of dressing up was tucking in her Loveland Tigers Basketball T-shirt. “Pull your shorts up” was as routine a high school directive from Kerry and me as “clean your room.”

  From her homeys, Jillian developed a sense of belonging. Also an unfortunate taste for hip-hop and rap. Just because Jillian owned an intellectual disability didn’t curb her enthusiasm for Eminem and Snoop Dogg. Kerry and I had Bobby and Evan to thank for that slice of atonal hell emanating from the basement of the house.

  “Yo, Pops,” Jillian might offer, when addressing me.

  “I beg your pardon?”

  “Oh, sorry,” she’d say. “I mean, hey, Dad.”

  High school was a happy time for Jillian, in no small part because of her typical friends. One of them would cap Jillian’s whole high school experience with one defining gesture just as all of them were preparing to leave.

  CHAPTER 19

  Jillian and Ryan

  I promise to be good to your daughter, sir.

  —RYAN

  I love that boy.

  —JILLIAN

  I’d been replaced. That was plain. Forget the daily treks to the school bus stop, the Coffee Song, the reminders that Jillian was no longer my “little girl.” That was nothing. I’d become Number Two on what Jillian called her Best Boy List. As in, “Ryan’s my best boy now, Dad.”

  That first Homecoming date had become much more. Weekends were scheduled around their dates. Most kids with Down syndrome don’t drive, nor do their friends with Down syndrome. If they’re going to go anywhere together, someone has to take them. Kerry and I and Ellen and Dimitri were the designated drivers. After a few months, we decided we’d better paint our cars yellow and install meters on the dashboards.

  This was not going to be a two-person relationship; it would require a six-person team. All of Jillian’s life had been a collaboration. This new chapter would be no different. Jillian and Ryan were capable of having an abiding relationship, but they required a lot of help. They didn’t necessarily want Kerry, Paul, Ellen and Dimitri around, but they most definitely needed us.

  If they went to dinner, we went to dinner. When they went to the Cincinnati Reds game we did, too. Friday night or Saturday night was date night. For kids and adults. The adults were grateful that the kids liked Chinese. It was a good thing we were of like minds when it came to Jillian and Ryan. Our goals were entirely in sync. It was a happy coincidence that our children fell madly for each other.

  Kerry and I lost friends in the Down syndrome community because of the way we’d chosen to raise Jillian. Other friends simply drifted away. Dimitri and Ellen were different. Like Kerry, Ellen had seen a calling realized when her son was born with Down syndrome. Kerry wanted to be a mother; Ellen wanted to be an advocate. It just hadn’t happened for either of them the way they had originally envisioned.

  Ellen knew what she wanted for Ryan’s education, and she came to know the law. She would not be bullied or patronized. The school people she faced across the conference table might have said she was the one who did the bullying. “I don’t accept what others say, unless I think it’s just,” she said. Dimitri concurred: “The unfairness of others drives her.”

  Very early in Jillian and Ryan’s relationship, they requested that during their dates they’d appreciate the adults sitting as far away from them as possible. In the kitchen, perhaps, or in a different country. For the first year or so, we went where they went, but eventually we would simply drop them off and entertain ourselves elsewhere.

  “I am here to take your daughter to a lovely dinner, sir,” Ryan would announce when he arrived.

  I would pound a fist to a palm in mock menace. “You better be good to her, young man,” I’d say, whap-whap-whap.

  “Oh, sir. I love your daughter. I always take good care of her.”

  And he did. He’d open doors for her—to the car, to the restaurant, to the house. On special occasions, he’d arrive with a spray of flowers. Ryan didn’t show up at our front door in ragged blue jeans slung so low on his hips you could see his boxers. He didn’t look away when you spoke to him, or act as if you were old and ridiculous. He dressed nicely. He smiled. He shook hands. He made conversation.

  Our relationship with Dimitri and Ellen grew apace. For a while, disability conversation dominated. It was therapeutic. It was also easy to see, early in our friendship, that Ellen Mavriplis was not to be underestimated. She’d always had a rebel streak and an affinity for the underdog. In high school, she protested against nuclear power. In college, she majored in psychology. Difference attracted her.

  “I had a passion for those who were socially outcast. I never shied from non-traditional thinking,” she said.

  She wanted to find a cure for autism. She married Dimitri, who had come to the states from Greece as a 20-year-old, speaking English as a second language, to get a college education at Ohio University. Before Ryan was born, Ellen had considered adopting a child with Down syndrome.

  Eventually, Ellen would start her own business, Inclusion Advocates, to help the parents of children navigate the special-education system in the public schools.

  More than anything, Ellen is competitive. She wants to win. When she is right, she wants it known. She has an edge that works very well in a confrontational setting, such as an IEP meeting. For Ellen, “advocate” is as much a verb as a noun. She could never have known how her passion would be tested and validated. And then she had Ryan. Some people spend their entire adult lives seeking professional fulfillment. Ellen found hers the day Ryan was born.

  That day, a social worker came to Ellen’s hospital room and urged her “not to make any decisions right away.” Translation: Giving Ryan up for adoption is an option. Ellen had an easy answer: “Thank you. Now go away.” She and Dimitri had no denial when Ryan was born. They were angry, but only at the reactions of others. They received sympathy; they didn’t want it. They didn’t much understand it. They had a beautiful baby.

  Again the thoughts of Ellen and Dimitri paralleled our own. In the days after Ryan was born, they wanted to see success stories. Ellen said, “Give us the possibilities. There is going to be success. How do I make that happen? Don’t tell me what Ryan might not do. Why would I aspire to the low end?”

  An aunt sent Ellen a newspaper story about a young woman with Down syndrome who was bilingual and played tennis. It stuck with Ellen because of the hope it portrayed. “What else can these kids do? If we don’t put limits on them, what can they achieve?”

  After the trauma of the first day—“All I want is for people to love him,” she told a cousin on the phone—Ellen started gathering her wits and her will. The family moved to South Bend, Indiana, soon after Ryan was born. Ellen joined the local Down syndrome support group there. The rebel had found a cause.

  She met with the school system’s director of student services. That’s not unusual for a parent to do, but Ryan was barely a toddler. She wanted full inclusion at a time when full inclusion was the law, but not always the convention. “That was the only option,” she said.

  She became president of the local Down syndrome support group. She changed its name and its mission to include advocacy. That involved challenging the educational system. She helped form a task force of teachers, administrators, parents and local business leaders. The mission was to get the schools in line with IDEA. “I pulled out the law,” she said. “I started researching. My mission was to do everything we possibly could to enhance Ryan’s life.”

  He
r approach was blunt: “This is what the law says. Here’s what my son is entitled to. I want full inclusion. What are we going to do about it?” She got the ball moving in South Bend, then the family returned to Cincinnati when Ryan was three years old.

  By then, he was a rambunctious preschooler. Ellen and Dimitri would open one side of Ryan’s crib to allow him to come and go. He’d climb out and proceed to take all his books from the shelf and pile them in his crib, where he’d sit quietly and flip the pages.

  Ellen enrolled Ryan in a Montessori school. By law, the public schools still had to provide him with services: Occupational and speech therapies, a classroom aide. The Mavriplises switched him to public school in third grade. Between fourth and fifth grades, the school wanted to move Ryan to a special-ed classroom. Before that happened, Ellen asked to observe one.

  “It made me physically sick,” she recalled. “The lowered bar, the watered-down behavior and academic expectations. Adults treating students like babies. So much unrealized potential. The kids in that classroom had no books. This was fifth grade.”

  Ryan’s IEP dictated that he would be in a regular-ed classroom. The school brass couldn’t change that without a due process hearing. No one wanted that, least of all school brass. The law was not on their side. “Let’s not waste time talking about things that aren’t going to happen,” Ellen said. “Let’s talk about how we’re going to make this work.”

  What followed was eight years of persistence, vigilance and the imposition of Ellen’s will. In Ryan’s IEP meetings, she was direct, polite, forceful and intimidating. It helped that she stood just under six feet tall and knew the details of IDEA like an ant knows a picnic. She competed. “I dove into it. It was all about inclusion for me. Nothing else made sense.”

  We’ve debated over the years with me playing devil’s advocate. Sometimes, I’ve actually believed what I’ve said.

  “The feds have given this mandate to the states to give our kids a free and appropriate education,” I might say. “But they haven’t suggested how the states pay for it. I want Jillian educated. I’m willing to use the law as a sledgehammer. I’m also realistic. What if they don’t have the money? What if the school district is tapped out?”

  Ellen didn’t care. She was not one for reasons, most of which she saw as excuses. “They can spend it now, or they can spend it later,” she would say. “If we skimp up front on their education, we pay far more to take care of them the rest of their lives.”

  It was cheaper to educate kids with disabilities than it was not to. Educate them, and they have a fighting chance to become productive, tax-paying members of society. Warehouse them in segregated classrooms, sheltered workshops and group homes, and they’re likely to be on the government dole as long as they live.

  “There aren’t special lines at the grocery store,” Ellen said. “Just because Ryan and Jillian have a disability doesn’t mean they’re less. They’re different. We’re all different.”

  “What if the schools don’t have the money?” I persisted.

  “Our society has made a commitment to take care of our citizens with disabilities,” Ellen would say.

  Three times, she and Dimitri filed due process cases on Ryan’s behalf against stubborn school districts. Once, the district settled before the hearing. The other two times, Ellen won the case, and Ryan got the requested services.

  Ellen turned the emotion she had for Ryan’s situation into pure resolve. Emotion is just a start, she said. “Resolve gets results.”

  Kerry and I enlisted Ellen’s services when Jillian was a sophomore in high school. Her knowledge of the law and her understanding of the IEP process added force to our argument with the school district. Ellen’s presence at IEP meetings became mandatory and so meaningful that most meetings would end with school administrators asking if we intended to bring Ellen to the next meeting.

  When we said yes, we knew the school folks would be bringing a lawyer or two.

  We do our best work when we are inspired beyond ourselves. Ellen lived her work—and saw its results—every time Ryan walked through the door.

  And now, he and Jillian would be walking hand-in-hand, to a restaurant or a movie or a ballgame. It appeared effortless. No agendas, jealousy or guile. No motives beyond enjoying this date and planning the next one. It has never been any different.

  As Ellen put it, “He loves her. He really loves her.” Because love is an emotion, it can be hard to articulate. Ellen gave it a good try.

  “How do I describe that? They act like they’re madly in love, every time they have a date. They have that essential quality that the rest of us spend our entire lives aspiring to. They love and accept each other unconditionally. With that comes respect. It’s not an accident.”

  Long before Jillian met Ryan, she led with her heart. “I love my (fill in the blank).” Mom, Dad, Kelly. School, best friend Katie, Jake the guinea pig. Walker the dog. Her soccer team, her swim team, her neighborhood, her macaroni and cheese. Her life. Jillian expressed unconditional love for her life.

  She wrote us notes. Hundreds, over the years. Sometimes they appeared after she’d done something wrong. For instance, after she’d spent her lunch money on candy and potato chips, Jillian wrote, “I so sorry about my lunch money. I love you guys. You are my heart and dreams.”

  Other times, she just wanted to express herself.

  Dear Paul Daugherty:

  Thank you for be a great dad to me. I did have fun with you all the time. It is so fun to be around with you and take me to dinner with you. Oh last thing, you are my heart and dreams and my best father.

  Love, Jillian

  She’d slip the notes under the door of my office at home. They were handwritten at first. Then, as Jillian became accomplished on the computer, she’d type them and print them out. As she grew older, she switched to journals. A corner of her bedroom was filled with a stack of them, ten at least. Almost all the entries included the phrase “heart and dreams.” Nothing Jillian wrote could leave her head without her heart’s permission. Life, distilled and simplified. Heart and dreams: Don’t leave home without ’em.

  Four years to the day after they attended that first Homecoming dance, Jillian made dinner for Ryan. She was 18. He was 20. She set the table with a linen cloth and a bunch of freshly cut flowers. She lit candles. She inserted two pictures of her and Ryan into a snow globe.

  Jillian wore a black dress, hem just above the knee. Her hair was pulled back and tied. She wore red lipstick, not too much. Makeup like stardust enhanced her gaze. She had bought the spaghetti and the meatballs and the cucumber for the salad. At close to 6:00, she stirred the sauce and tossed the salad. Ryan would arrive momentarily.

  “I’m so excited,” she said.

  Ryan arrived, immaculate and announcing his good intentions. I whap-whap-whapped my fist to my palm, for what by then was easily the 500th time. “I love your daughter, sir,” he said, also for the 500th time. He brought flowers and a bracelet bearing both of their names.

  Kerry and I retreated upstairs to the foreign country of our bedroom, balancing our plates on our knees. We snooped a little.

  Jillian and Ryan laughed at each other’s jokes. “You’re my best boy,” Jillian said.

  Ryan said, “Thank you. I’m afraid of your dad.”

  “Don’t worry about it, Ryan,” Jillian says.

  “No. I am,” Ryan says. From the top of the stairs we hear Ryan’s fist slapping his palm. Whap-whap-whap.

  “He just teasing you. But you love me, right?”

  “Of course,” Ryan says. Then he calls Jillian “darling.”

  Jillian yelled up the stairs when they were done: “You guys can come down now!” After dinner, Kerry cleans up. Jillian and Ryan slow dance to a country song.

  Later, when Ryan has gone home and the night is bright with stars, Jillian and I sit on the deck out back, listening to the music of the night.

  “Good time, sweets?” I ask.

  “Yeah,” she
says. “You know what, Dad?”

  “What?”

  “I love that boy.”

  A few years later, on Valentine’s Day, Jillian again makes dinner: Stuffed shells, salad, bread sticks. Kerry and I bring a folding table into the family room, in front of a fire we’d made for the occasion. Kenny G is on the CD player.

  Ryan appears in a coat and tie, again bearing flowers. Jillian is in a brown dress, worn originally at a formal dance, a prom or a Homecoming in the not-too-distant past. Her closet is filled with formal dresses. It looks like a rainbow of finery.

  They offer toasts.

  Ryan, first: “I just want to say I love your daughter, and I am so happy I am with her tonight, having this wonderful dinner.”

  Then Jillian: “I so happy to be here with you guys and my best boy on Valentine’s Day.”

  Sparkling grape juice all around, before the parents again retreat to the country upstairs, plates on laps.

  Jillian and Ryan sit close on the coach, feet propped on the ottoman, watching the Disney Channel. They know how they feel. They know how they make each other feel. Their love is easy.

  After a while, Jillian gives Kerry and me permission to come downstairs. She asks that I find “Goodnight, My Love” and put it in the CD player. After I pretend to be seriously aggrieved—“That’s our song, Jills!”—I slip it into the machine. Jillian says thanks and tells me I can leave now.

  Well, okay.

  Later, after Jillian and Ryan say their goodbyes, Jillian asks me to put the song back on. She grabs my hand and pulls me onto the dance floor. Her head rests on my chest. “This never gets old,” Jillian says. We dance to “Goodnight, My Love” in slow circles, all the way back to 1989.