An Uncomplicated Life (25 page)

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.”

Her 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.

Mister Number Two still draws the occasional glance from his Best Girl. She has moved on, and that is the way it should be. Number Two still gets that occasional wink, though.

JILLIAN AND RYAN LIVE
their once-upon-a-times. They are who the street-corner poets wrote about in the still of the night. Their relationship informs us. We look at them and say, “This is how it can be.”

A few days later, Jillian writes this:

Dear Ryan:

I love you so much in my heart and this is amazing we are dating about 6 years. I have been thinking about our love and kisses too. We are wonderful together. I will make a love song for you.

Ryan reads it, and reddens. “I love your daughter, sir,” he says.

As the years have passed, we’ve loosened the leash. They’ve celebrated an anniversary with a dinner cruise on a stern-wheeler, where they delighted the other passengers with their dancing and, later, romancing on the deck of the boat as it plied the Ohio River past the city lights of Cincinnati.

We like to think the way we interpret their relationship is also glimpsed and appreciated by the rest of the world. Acceptance and respect aren’t solely the province of “typical” couples. They can happen to anyone whose mind is open and whose heart is as willing as it is pure.

The Dells once sang, hopefully, that “Love is so simple.” Most of us have disproved that pronouncement, through word and deed. We have regret and sadness. Not all of us, though. Not all of us.

Two years ago, Jillian and Ryan went to dinner at the Cheesecake Factory at a local shopping mall. Ryan appeared especially nervous as we drove them to the restaurant. “You
okay, Ryan?” Jillian asked him. “Yeah, fine,” Ryan said. We dropped them off and arranged a time to pick them up.

After dinner, Ryan said, “I have somewhere I want us to go.”

“On a trip?” Jillian asked.

“No. Better.”

They walked the length of the mall. Ryan held Jillian’s hand.

“Where we going, Ryan?” she asked.

“You’ll see,” he said. They arrived at a jewelry store.

“Oh my God,” said Jillian.

Ryan informed the clerk of his intentions: “We’ve been dating six years. We’re very serious.” Ryan introduced them. “My name is Ryan, and this is Jillian, my lovely girlfriend. I am going to marry her.”

Ryan asked to see engagement rings. The clerk obliged. What the heck.

Ryan took the first diamond between his thumb and forefinger. He got down on one knee in the middle of the jewelry store in the middle of the shopping mall. “Will you make me the happiest man?” Ryan asked.

Of course, Jillian couldn’t say yes fast enough. She tried on several rings, decided she preferred a thin model. “I will definitely hold on to this ring,” the clerk said.

Ryan said that would be great. “I’ll be coming back soon.”

Soon being a relative term, of course.

Ellen once said, in the midst of one of our contrarian discussions, “Everything you’ve fought for is for the bigger purpose of Jillian spreading her wings. I want Jillian and Ryan to be an inspiration to other families. They’re walking the front lines.

“There should be more Ryans and Jillians. There can be. Their stories can be greater than ours.” Ellen imagined the evolution if kids with disabilities jumped on the Ryan-Jillian track at a far earlier age: “If they do in first grade what we didn’t do until high school, who knows how this thing can evolve?”