DSL - A New Life Together

Their first apartment -- a rite of passage complete with a hole in the bathroom wall, a doorknob that won't stay on and half a dozen clocks all with a different time.

But none of this seems to matter to Jackie Nalley and Byron Lukins.

They are both 23 -- and read at about a third-grade level.

"Coming to live with her boyfriend is something, when she was little, I would have told you … would never happen," said Nalley's mother, Nita Nalley. But in March, Nita Nalley unpacked her youngest daughter's hope chest at the Highlands apartment. Inside were things Jackie Nalley had been saving for the day she would join Lukins in his one-bedroom apartment next door to his mother -- a swag lamp, a cookbook holder and a wedding-style picture frame.

The wedding date, June 21, is marked on Jackie Nalley's country-music calendar. But Nita Nalley and Lukins' mother, Lynn Lukins, want them to wait a little longer. "Because, really, they're kind of forging ground that's not been forged very often, in some cases, never," Nita Nalley said.

The two have Down syndrome, a chromosomal abnormality that causes both physical and mental impairment. Until recently a home of one's own and a partner were not part of life for people like them. But a societal shift toward inclusion of those with mental disabilities, coupled with medical advances that have dramatically increased the life expectancy for people with Down syndrome, are changing that, said Diana Merzweiler, director of Down Syndrome of Louisville. While exact numbers are hard to come by, Jon Colman with the National Down Syndrome Society said marriage among couples with Down syndrome, while still rare, is on the rise. "This is really the first group of people where we've had those expectations," said Sue Joe, with the National Down Syndrome Congress.

Nalley and Lukins are ready. After her clothes were stowed in the closet, her towels stacked in the hall and her mother and sister busy tidying up, Nalley lay down on the bed next to her boyfriend/fiancé/roommate.

"Are you nervous?" he asked.

"Yeah," she said.

"I love you."

Then they kissed.

A new generation

Letting go of Jackie, said Nita Nalley, is both easier and harder than it was to let go of her older daughter, Michelle Campbell, now 31. Nita Nalley knew Michelle was capable of doing well in school and succeeding in a career and family. She didn't have Down syndrome. But with Jackie, every accomplishment was cause for celebration and fear, because she felt she had to protect her. But her mother also realized she had to let go and see if Jackie could stand on her own.

It didn't start out that way.

"When Jackie was born, I was absolutely devastated," Nita Nalley said. In 1983, the year Jackie Nalley and Byron Lukins were born, the life expectancy for someone with Down syndrome, one of the most frequently occurring chromosomal abnormalities, happening in one out of every 733 live births, was 25. Today, thanks to medical advances, it is in the mid-50s.

Not long ago, said Merzweiler, families were encouraged to place their kids in institutions. Now, she said, institutions have become the exception, and early intervention, good education and life skills training the rule. The organization she heads, Down Syndrome of Louisville, reflects this trend. Founded in 1977, it promotes self-sufficiency, education and social interaction for people with Down syndrome.

When Nita Nalley realized her youngest daughter would do almost everything her older one did, only more slowly, she said her attitude changed from one of despair to one of hope, and she pushed Jackie to be as self-sufficient as possible. Both Jackie Nalley and Byron Lukins, who are in the upper range of functioning for people with Down syndrome, attended regular classes, with resource teachers and adapted material, at the Brown School. After leaving school, she got a part-time gig at Heine Brothers' Coffee, weighing and bagging beans, among other things, and he got a similar job in the kitchen at O'Shea's Irish Pub. He started as a dishwasher, said O'Shea's executive chef Tom Jackson, but worked his way up to a prep cook and part of the O'Shea's family. "He has goals too; he develops. People have a stereotypical idea of what Down syndrome is. …what they don't realize is he develops emotionally, he develops on the job," said Jackson. "He's like everybody else."

But he isn't.

Neither Lukins nor Nalley is allowed to drive -- they don't have the reaction time or judgment. To get to work they walk, take the bus or, in his case, ride a bike. Shopping for basics is done at the nearby grocery store, but anything else comes from their families, who continue to cook dinner for them. For breakfast, lunch and the daily nighttime cheese dip, they are on their own. Laundry is done by their mothers.

The money they earn, and benefits they receive from the government, are controlled by their parents. Their apartment, half of an old house split into two units, was bought by Lynn Lukins and her husband, Nick Waldrop, with help from Lynn Lukins' mother.

Family members usually drive them to softball games, which Waldrop, Byron Lukins' stepfather, helps coach, and other activities. Jackie Nalley's parents are divorced, and her father lives in another state, but her mother and sister take her to dance classes, parties and doctors' appointments.

Still, their families encourage them to try as much as they can.

"Many times what other people think they can do and what I think and what Lynn thinks are worlds apart," Nita Nalley said.

When school testing showed Byron -- the oldest of her four sons -- to have an IQ so low he would have "been basically sitting in a corner," said Lynn Lukins, she had him retested privately, showing he was functioning at a far higher level.

Jackie Nalley's sister said that Jackie Nalley and Byron Lukins "have just enough skills, ability, knowledge and intelligence to know what's out there, and what other people their age are doing. And yet, they know that they can't quite get there." But the real injustice, Campbell said, "would have been not to let them try."

A flair for drama

In their apartment, the 2005 "King Kong" movie played on the television, but Nalley was only half watching. She was born with severe scoliosis, and her back was bothering her. As she hunched over her hope chest, which now, a month after the move, has become the coffee table, she rested a hand on her lower back. Lukins slid up next to her.

"It's OK," he cooed into her ear. "You'll be fine. Calm down."

Then he started to sing "You Are My Sunshine."

Lukins asked Nalley to be his girlfriend in middle school. In high school he bought her a diamond and sapphire promise ring, which she wears on a chain around her neck. When they watch "King Kong," he pretends to be the hero, Jack, and she, the heroine, Ann.

After the movie, dinner was brought to them by Nita Nalley. As she left, Lukins gave her a playful slap on the bottom. As soon as the door closed, Jackie Nalley laid into him.

"Why'd you slap my mother?" she demanded, arms crossed, voice a level below shouting.

"It wasn't that hard," Lukins mumbled, his head down.

They continued until Nalley got Lukins to pinkie-shake that he would treat her mother better.

"They both have a real flair for drama," said Campbell. "So sometimes I think it (fighting) is almost for fun."

Their reality

That night Nalley laid two towels by the bathtub and two robes on top of the closed toilet lid. Earlier, when she had told Lukins they could take a bath together, he had hesitated.

"I don't want my mom to get mad at us if we do this," he said.

"Hello. We live here," Nalley replied. "Hello. It's not her business."

The bath took place, the soundtrack from the 1996 "Romeo + Juliet" movie playing in the background.

Until recently, sexuality was not much of an issue for people with Down syndrome, said Leslie Walker-Hirsch, a leading expert on sexuality in the developmentally disabled. A short life expectancy, limited education and restricted socialization meant the topic rarely surfaced. But as that changes, she said, "they will want to be part of the American dream," which often includes being half of a couple. Men, and possibly even women, with Down syndrome face fertility issues, and research on the subject is sparse.

When Nalley moved in with Lukins, she started using the birth-control patch -- at her mother's urging. Lynn Lukins has also talked to her son about children and brought up the issue of a vasectomy, something they are still looking into. Being a parent, she said, "is just not something he is capable of doing."

But living on his own with his girlfriend seems to be working out. Byron Lukins' father, and Lynn Lukins' ex-husband, Tom Lukins, said that, at first, Byron called it "the apartment." After Nalley moved in, it became "our apartment" and, more recently, "home."

Home is where "King Kong" can be played twice in one night and you can become the hero. Lukins fell asleep during a second showing of the film, but the next morning he left a note for the still-sleeping Nalley. He signed it Jack. Then he headed next door to walk the family dogs before biking to work.

"They've got a puzzle going at all times. There seem to be a lot of movies around," said Tom Lukins. "But the dishes are clean and the bed is made the times I've invited myself in."

"They really have a sense of the importance of taking care of each other."

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