A Very Special Wedding

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Carrie's mother Peggy became concerned about her daughter's social and romantic needs as Carrie entered adulthood. "When the loneliness began to loom around 21 and she saw her sister and brother having relationships and getting married, she longed for it," says Peggy. Group discussions at a nearby resource center for people with disabilities brought "some comfort," she says, but Carrie continued to talk about meeting her "Mr. Right." Says Peggy: "We never dreamed it would happen."

Sujeet's mother Sindoor, however, says she "had marriage in sight straightaway" once Sujeet expressed interest in Carrie. "We come from a different culture," she explains. As India-born Hindus, Sindoor and Sharad Desai, both dentists, "don't expect dating and breaking [up]." Nor did Sindoor wish to expose her vulnerable son to the emotional upheavals of serial entanglements.

With help from their families, who live about 90 minutes apart in upstate New York, the couple began dating. At a Valentine's Day party, "I had my eyes on her all the time," Sujeet recalls. Later that night, "I started to kiss her. She loved it!" The two began speaking by phone daily. Says Peggy: "They can talk about things"--like what they plan to eat for lunch that day--"that we'd get bored with." Finally, with plenty of plotting by both families, Sujeet popped the question onstage after he played a concert for people with disabilities, a moment that can be viewed on his website, Sujeet.com Says Carrie, who has exemplary verbal skills: "There are not many words to express how much I really love him. He's beyond words."

While love was blooming, the two families worked hard to create a system that might support an eventual marriage. There were few role models to follow. Many older adults with DS live in residential facilities that do not accommodate married couples. Another reason such marriages are rare--no one knows exactly how many there are--is that marital status can affect the amount of support that adults with disabilities receive from federal aid programs administered by the states. "People who might otherwise be interested in marriage don't want to risk losing their benefits," says Dr. William Schwab of Madison, Wis., who has worked as a consultant on sexuality issues for the National Down Syndrome Society.

Luckily for Carrie and Suj, New York State offers an innovative pilot program that allows individuals with developmental disabilities to design their own support plan, subject to state approval. The endlessly devoted Desais and Bergerons pressed for a plan that would allow the newlyweds to live together in their own apartment, located midway between the two family homes, and receive part-time aid with tasks like cooking. "They don't need baby sitting every hour," explains Sindoor. "What they need is money management and transportation" to part-time jobs, volunteer work, exercise classes and other activities. The "self-determination" program requires enormous initiative and hard work from the young couple, as well as those in their circle of support, but it allows them to take considerable responsibility for their own lives. "We want them to become as independent as they could be," says Sindoor, "so when we are not around, they can manage."