Thursday, February 14, 2013

When Bill met Shelley: No disability could keep them apart

"If you're that in love, age doesn't mean a thing. Even though my mind was young and my heart was young -- somewhere inside my head I was mentally old enough."
–Bill Ott
“You know that scene in 'Dirty Dancing' where Baby meets Johnny for the first time? It was kind of like that."
–Shelley Belgard
BILL OTT WILL always remember the moment he met Shelley Belgard. It was in spring 1988. He was 12 and sometimes shy. Into music, sports and, suddenly, girls.
Shelley was three years older, chatty and outgoing. They'd both shown up at a Montgomery County social club looking for friends, fun and the kind of acceptance that seems so elusive during teen life.
Shelley smiled. Bill introduced himself. And that was it. "I didn't know what love was," he says. "Until I met her."
He was sure it was the real thing, but nobody ever believes that coming from a 12-year-old.
Certainly not one with Down syndrome.
But Bill knew. "If you're that in love, age doesn’t mean a thing," he says. "Even though my mind was young and my heart was young -- somewhere inside my head I was mentally old enough."
And the feeling was mutual. "You know that scene in 'Dirty Dancing' where Baby meets Johnny for the first time? It was kind of like that," remembers Shelley, a petite brunette who was also born with a mental disability. "You're looking at this awesome-looking guy, and you really don't want to blow it. You kind of want to play it safe and not play it safe at the same moment."
He lived in Silver Spring and she was in Potomac, so they exchanged phone numbers. Their parents would drive them to movies and one another's houses. They frequently met at the social club. Throughout high school, they stayed close.

Bill took Shelley to both his junior and senior proms. Each time he rented a tux, and she picked out a fancy new dress. They wrapped their arms around each other to pose for photos and danced all night long. Bill, who grew up going to Catholic Mass every Sunday, told Shelley's mother he would convert to Judaism if that's what it took to be with her.
But after high school, it became more difficult to remain in each other's lives. They moved into assisted-living programs in different parts of the county. There weren't as many social activities to bring them together and, eventually, they lost contact.
But Bill never forgot. He had known true love -- her name was Shelley.

THEY CALLED IT "water on the brain," and Gail and John Belgard were told that their firstborn would die early and never be functional.
Fluid was building up inside the infant's skull, wreaking havoc on her brain. It was 1974, CAT scans had just been invented, and there were approaches to treat hydrocephalus but certainly no cures. Doctors said the baby would live for six months.
"But she kept not dying," recalls Gail, a psychologist who, like her husband, grew up in Louisiana.
They were living in Houston at the time, and, despite Shelley's persistence in the world, experts at Texas Medical Center insisted Gail and John not take her home. But after nine months, they'd had enough. Their daughter was living, they reasoned, so she might as well live at home.
By the time Shelley was 10 years old, she'd had 29 surgeries. Surgeons put in shunt after shunt to drain the excess fluid from her brain. At 5, she had a craniotomy that lasted through the night and nearly caused blindness.
Despite it all, Shelley was a happy, effervescent little girl. Her verbal and motor skills were delayed, but once she started talking, she never stopped. Once, while in the hospital on her 10th birthday, she tried to bargain her doctors into releasing her for the day, but they didn't budge.
Gail and Bill never knew what Shelley's life would be like in a year or two years, never mind into adulthood -- if, God willing, she made it that far.
"You know what was nice?" Gail remembers. "People have all these expectations of their children or wishes for their children -- to go to Harvard or whatever. For us it was, 'Shelley learned to tie her shoe! She learned to feed herself! Gee, she's walking!' Everything was great. Whatever she was doing was great."
In the early 1980s, the Belgards, who by then had two younger sons, moved to Potomac. Gail had grown frustrated with the opportunities available for Shelley in Houston, so she searched the country for a place where their daughter would have the best chance to grow and make friends. They settled on Montgomery County.

All Gail and John wanted was for Shelley to have the most normal life possible. They knew she would never drive, have children or go very long without a doctor's visit. But she had proved herself more than capable of learning and loving. So even at Shelley's bat mitzvah, the Jewish ceremony that marked her transition to womanhood at 12, Gail insisted the rabbi recite the normal prayer that he'd meet Shelley again one day under her wedding chuppah.
In Montgomery County the Belgards found public school programs tailored to people like Shelley, high-functioning individuals with intellectual impairments. There were after-school programs and social clubs where she made dozens of friends. She went to seven proms and never lacked for weekend activities.
"I felt like I had died and gone to heaven when we moved here," Gail recalls.
Shelley flourished at Walter Johnson High School. She took some classes with the general student population and others through a special education learning center. She loved to read and write. Math came harder, but with the help of dedicated tutors she graduated with a full diploma and stayed on to participate in a two-year job training program.
Then came the new hardest part: figuring out the rest of Shelley's life.
The Belgards were unsatisfied with the special-needs living options available: Some provided too much assistance; others offered too little. So Gail and the mother of one of Shelley's friends worked to set up a program that would suit their needs. They lobbied for state funding, found a company that provides services to high-functioning people with disabilities, and rented a dozen apartments in a building in North Bethesda. Sixteen young adults picked roommates and moved in with the help of graduate students who would serve as counselors and aides.
After stints at a few other places, Shelley found a full-time job in the mailroom of a medical association. She got involved with a weekly theater program, was a fixture at the social gatherings put on by the assisted-living program and saw her family several times a week.
It was what her parents hoped for -- the most normal life imaginable.
Still, it was lacking. When she was sick, no one rubbed her back until she fell asleep. Sometimes she had stories to tell, and there was no one to listen. Her roommates didn't stay up worrying if she was late getting home from work.
Shelley was lonely.
BY HIS MID-20s, Bill was living with a couple of guys in an apartment on the other side of Bethesda. Aides would drop in occasionally to help the three men, who all had intellectual impairments, do chores or go shopping, but for the most part they were on their own.
Bill had held a part-time job at Giant since he was 16 and was an expert at getting himself around on public transportation. Though he didn't walk until he was 3, he grew up to be a wrestler at Springbrook High in Silver Spring. He slogged through all the tests required to earn a full diploma, took up guitar, became an ardent Redskins fan and learned a handful of sayings in other languages so he could greet Giant customers in their native Farsi or Spanish.
"He has a tremendous memory," says his mother, Mary Ott, who still lives in Silver Spring with her husband, Ed. "And he's always been very concerned about people -- very people-oriented."
Bill had always been a romantic, too. He often talked to his parents about marrying someday, about having the kind of relationship they had. After losing touch with Shelley, he dated a few other young women, but nothing seemed quite right. He felt controlled by some of the women, judged by others.
For several years Bill was among a couple of dozen local people with disabilities who went on an annual Caribbean cruise with chaperones. In 2007, Shelley signed up for the trip. Gail Belgard still remembers how excited Bill was when he saw Shelley at the orientation meeting.
But once they set sail, Shelley was overcome by seasickness. Because she was unable to leave her cabin, a chaperone asked for a volunteer to keep her company. Bill's hand shot into the air. "I'm staying with her," he declared.
"I want to be Shelley's hero," he would say later, recalling the moment. "I want to be her avenger."
That December, he told his parents he wanted to marry Shelley.
"I just kept coming back to her," Bill says. "Who was the woman who would not prejudge me from the outside and look inside? I knew Shel would. So I came back to her."
He took her to dinner once, and another time they rode the bus to Montgomery Mall. They one-upped each other with puns. Sometimes Shelley struggles with balance, so she took his arm as they walked. For her birthday in January, they celebrated at a Mexican restaurant. Knowing Shelley liked to read in bed at night, Bill gave her a book light. Then he pulled out another little box. Inside was a small ruby ring he'd bought with savings from the grocery store.
"Shel, will you marry me?" he asked.
She immediately said yes and raced home to tell her roommates. When Bill announced the engagement to his parents, they weren't sure what to think. They knew Bill was serious, "but we had to see how it would work out," Mary says.
But it didn't. Shelley and Bill stuck together for years and continued to insist their love -- and engagement -- were real. Bill took the bus to see her almost every week. They spent holidays together, held hands and made up pet names for each other. They pushed, again and again, to marry.
"It's like going into a new venture -- flying into the world. That's exactly how I think of getting married," Bill says. "It's like two eagles flying into the sky together."
HAD THEY BEEN born a few decades earlier, Bill and Shelley might have been institutionalized. Even if their parents had fought to bring them home, their life expectancy probably wouldn't have stretched much past their 20s. But today people with intellectual impairments often live into their 60s or later, and many have lives that include jobs, active social calendars and no small measure of independence. With increasing frequency, they seek lifelong romance.
Experts say it's difficult to track the number of couples with intellectual impairments, because they often enter into committed relationships without getting married. In many instances, a legal marriage could interfere with Social Security or health-care benefits. But the intellectually impaired and their advocates say it should surprise no one that they often possess an abiding desire to find a partner in life.
  • "There is a bias in our society that is unfounded -- that just because you have Asperger's syndrome or you have Down syndrome that you automatically cannot sustain a relationship. But that's just not true," says Philip Davidson, a professor of pediatrics at the University of Rochester School of Medicine and Dentistry who has studied developmental disabilities. "These people are really not all that different than you and me. Their investment in the lives of other people are as significant as yours and mine."
In the past, stigmas against people with intellectual impairments led to forced sterilization and laws prohibiting them from marriage. In some states those laws remain, though they are rarely enforced. Sexuality continues to be a complicated issue inside and outside the disabled community, especially when it comes to a disabled couple's ability to care for children. But the value of a committed relationship can't be overestimated, say people with developmental disabilities and their families.
Liz Weintraub, a 46-year-old Rockville woman with an intellectual impairment, married her husband, Philip, seven years ago. They met at an advocacy picnic, and it was "love at first sight." She always wanted to wear a white dress and walk down the aisle just as her sister had done. But what came after the wedding was even more significant.
"It's the company," she says. "Knowing that I have someone that I can talk to every day. That I can love someone. And that somebody can love me back."
AFTER TWO YEARS of dating, Bill became Shelley's roommate. He had his own room and a separate bed, but they were together. And it wasn't exactly easy. In the beginning, Bill would come home, say hi to Shelley and retreat to his room to watch television for hours. Shelley would get upset, sometimes so mad "that I nearly threw this ring right at him."
"Getting used to living with Shel was a big trial for me," says Bill, who is broad-shouldered and friendly, quick to offer a wide grin and a bear hug. His speech is sometimes slowed by a stutter but is almost unfailingly thoughtful and poignant. "That was just me trying to get from one part of my life to another. It was a big transition for me, because I was living with guys. Guys watch sports. Guys watch TV. What guys do is what guys do. They watch TV in their underwear. Now I know to keep my pants on."
The pair began seeing a couples therapist every week. They say the therapist helped them learn how to share, listen to each other and respect one another's personal time and space. And he helped convince their parents they were ready for marriage. Gail Belgard was the last holdout.
"We all need to learn to be in a relationship, but it was much more severe," she says of Shelley and Bill's evolution as a couple. "I wanted to make sure this was the right person for Shelley."
The couple frequently came to dinner at the Belgards' house, and as time went on, Gail could see the warmth and depth of emotion between them. Bill learned what to do when Shelley had an epileptic seizure. Shelley helped Bill quit his fast-food habit and cook more at the apartment. They both loved board games, trivia, music and movies. They were attentive, affectionate and deeply concerned with each other's needs.
And they complemented each other even in their disabilities. Shelley, now 38, has problems with visual perception and gets lost easily. Bill, 36, has a tremendous sense of direction. When Bill is grasping for a word, it's often on the tip of Shelley's tongue.
And, above all, they're in love.
"When I see her, she's like a bright penny," says Bill, who tucks his T-shirts into his jeans and wears a belt beneath his round belly. "She's like the color of orange, like a real joyful, lively spirit. Her love is like pink. There is so much good in her that I really fell in love with."
"Awww, honey," Shelley says, blushing and pushing up her red-framed glasses. For her, she adds, the real gift is being "with someone who understands me. When other people think I'm talking in circles, he knows what I'm talking about. I don't have to explain it. He just gets me."
By the end of 2011, wedding planning had begun. It was decided that this would be a commitment ceremony, rather than a legal exchange of vows, because Shelley's health insurance could be jeopardized if she married.
But everyone involved considered it an official wedding. Shelley and her mother shopped for a wedding dress and picked out invitations. They hired the band that played at her bat mitzvah. Bill and Shelley decided the colors for the wedding would be red and white. Red symbolized passion; white evoked purity, because the two decided to hold off on sex until after the wedding.
And last Sept. 2, Shelley walked down the aisle of the Bethesda Marriott to meet Bill under her wedding chuppah. She wore a strapless dress with crystal beading, a glittering tiara and red cowboy boots as an homage to her Texas roots. Bill's chest puffed with pride as he smiled at his bride. A rabbi and a priest presided over the ceremony, asking the pair if they would be committed to each other in good times and bad, sickness and health.
Later that day, they spun around the ballroom. For their first dance, they chose the Etta James ballad "At Last."
Bill Ott and Shelley Belgard’s bed. (Matt McClain/The Washington Post)

A COUPLE OF weeks after the wedding, Bill stayed out late at a friend's place and forgot to tell Shelley where he would be. She was worried and so furious when he came home that she was tempted to call it off. She didn't, of course, because she understands the importance of commitment, and, besides, the anger soon passed. That night she slipped into bed next to Bill, as she has every night since they said "I do."
Their life is one of overarching love and joy, but it is not perfect. They continue to meet with their couples therapist every week. They are still finding their comfort level with sexuality and working to strike the right balance between independence and togetherness.
But as they sat together in December, watching a video of the wedding ceremony, Bill's eyes welled up with tears and Shelley stroked his arm. "You were so handsome, honey," she said.
"I know," he replied with a nod.
"Don't worry," she added. "You'll always be handsome."
Their modern apartment, with granite countertops and French doors, is filled with family photos, board games and Redskins paraphernalia. Shelley has worked at the medical association for 15 years; Bill has been with Giant for 20. In the mornings and evenings, their counselors come in to offer hugs, help with cooking and make sure Shelley has taken her pills. Often the couple gathers with friends in the building to watch movies or share a pizza in honor of someone's birthday. Each month their calendars are marked up with happy occasions.
Still, there are moments of great sadness. Shelley, in particular, is acutely aware of her impairment in a way that many people with intellectual disabilities are not. Gail remembers riding in the car with the couple once and hearing Bill ask whether she would choose to be born without an impairment, if she had the chance. "Of course!" Shelley exclaimed.
"'Well, I wouldn't, because it's fine,'" Gail remembers Bill saying. "But it's not fine with her."
But on most days Shelley's sunny disposition shines through and she makes the most out of life, regardless of her disability. "I didn't choose to be born with hydrocephalus, and there's nothing I can do to change it," she says, shrugging.
Bill and Shelley, along with their parents, decided that Bill would get a vasectomy before the wedding. Their conditions are too severe to healthfully have a child. But Bill especially mourns the loss of children they'll never have.
"I'm such a loving person," he says, arms heavy on a table in the community room of their apartment building. "I have so much love to give. Shelley is such a loving person. And fatherhood is such a big thing to me."
But he knows they are a family, even without children. To him, the best part wasn't wearing a tuxedo to the wedding or dancing at the reception or even going on a honeymoon cruise to Mexico. The best part, he says, is just to "live with a woman who I've loved ever since I met her."
And everyone in their orbit is acutely aware of how much richer their lives are because of each other. On a recent trip with the Otts to visit family in Ohio, Bill's parents were struck by how well the two got on, even for long, boring stretches of travel. "You could see how happy they were together," Mary Ott says. "You could really see it."
Shelley's father, John, is stopped short by tears when he talks about what his daughter has found with Bill.
"You want your children to be happy," he says. "Having a mate -- someone who really cares if you come home at night, someone who cares whether you're well or sick -- that makes life worthwhile."
"Yes," Gail adds. "She's not lonely now."

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