An Uncomplicated Life (24 page)

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 homey. 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.

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?”