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Living with Down syndrome for half a century

Monica Merritt with her dog, Max, and father,

Monica Merritt with her dog, Max, and father, George Merritt, 82, in their Levittown home. (March 12,2010) Photo Credit: William Perlman

My sister Monica is reading at the dining room table.

"Buddy Harrelson," she says in her soft, scratchy voice, as she flips through the New York Mets Official 2007 Yearbook.

As her older brother, I'm always happy to hear Monica demonstrate a skill she was never expected to master. Born in 1958 with Down syndrome, Monica wasn't supposed to live beyond her teens, but she and others in her age group with the same disability have defied low expectations and are now part of the intricate tapestry that makes up the Act2 generation.

My kid sister, who never married and has kept her childlike personality, has grown up. At 51, she has become the faithful home companion and main emotional support for my dad, George, 82, a retired letter carrier. She calls him "the old man." He calls her "the eternal teenager."

Monica's opinion about being over 50? "It's the beginning of old age," she says, glancing over at our father. "Soon, I'm going to need Dad's cane."

That's classic Monica -- always ready with a wisecrack.

Over the past half-century, much has changed for adults with Down syndrome. Down syndrome children were once confined to institutions and consigned to early death. Now, they are living longer, on their own or in small neighborhood group homes, and many work in local offices or retail stores.

Over the years, the Special Olympics, movies and TV shows featuring people with Down syndrome have helped to change attitudes about the disability. 

Longer, better-quality lives
"The most important changes in the lives of individuals with Down syndrome have been advances in the medical field, which have increased their life expectancy," says Kathleen Feeley, an associate professor of education at C.W. Post campus of Long Island University and director of Post's Center for Community Inclusion. There also has been more social acceptance, she says, enhancing their quality of life.

Monica, whose bear hugs and gregarious nature have won over many friends, has, no doubt, contributed to and benefitted from this continuing enlightenment.

No one knows how many people with Down syndrome live on Long Island. Available information focuses more on the birth years: one in 750 to 900 live births in women under age 35 are infants with Down syndrome, Feeley says. About 90 percent of women choose to have an abortion after Down syndrome is diagnosed through prenatal testing, according to Feeley.

Newborns who will grow up to be one of the gentle people, like Monica, will have a better history in society than generations before them.

My sister is a survivor of the "dark ages" of the 1950s. When she was born, there was a conspiracy of silence regarding her condition.

The family doctor refused to say why Monica wasn't developing emotionally like other children. And after a Long Island Jewish Medical Center specialist broke the news to Dad and my mom, Virginia, a relative suggested that the "Mongolian idiot" be sent to an institution, something fairly common then for anyone who wasn't considered "normal" by society's rigid standards. No way, Mom said; she would raise her "special child."

We learned that Monica had three Number 21 chromosomes, instead of the usual pair. The condition is also known as Trisomy 21. The extra chromosome didn't mean much to me, my sister Mary, or brother Daniel, born 18 months after Monica. However, it gave Monica the distinct features shared by many people with her disability -- almond-shaped eyes and loose ligaments that result in excessive joint flexibility.

Monica was never made to feel different from her three siblings. She could hit a Wiffle ball across the open field behind our home in Levittown, get extra candy trick-or-treating with cat whiskers painted on her plump, pale cheeks, and swim with a life-preserver in the ice-cold New Hampshire lake where we took family vacations. 

When mean kids teased
We weren't allowed to tease her too much, but when mean kids said, "Your sister is retarded," we would correct them, saying, "Monica is just special."

She started going to the Levittown town pool when she was young and now she swims 20 laps a day in the summer. Everybody there knows her name.

"She was just like all you guys, one of the kids," Dad says. "But naturally we were protective of her."

Monica earned a diploma from the occupational program at Levittown's Center Six and went to the prom. She became a local celebrity when Newsday's Ed Lowe wrote a series of columns about her.

In 1996, as Mom lay dying of cancer, she told Dad, "When I'm gone, you take good care of Monica."

And he has. "She's a good companion," Dad says. "She does anything around this house that I might ask her to do." Monica does plenty of caretaking for Dad, too. She reminds him to take his pills, right after she takes hers and sets the table every night at 5. Dad does the cooking. Monica clears the dishes. On Sundays, they watch "60 Minutes" together.

Other than a hyperactive thyroid and a tendency toward overweight (also common in those with Down syndrome), she is healthy. In 1961, when Monica was 3, the average life expectancy for anyone with Down syndrome was 18 years, Feeley says. Medical advances for cardiac problems and the development of good self-help skills have added decades to their lives, she says. 

Pleasures of retirement
Her pleasures are like others of retirement age. Monica likes to sleep late and watch reruns of shows like "Hill Street Blues" and "M*A*S*H*." She also enjoys current shows, like "The Family Guy."

And when the animated series stoked controversy by featuring a Down syndrome character who described her mother as "the governor of Alaska," Monica gave the show a thumbs up, enjoying the character's voice-over by an actress with Down syndrome.

At home, she makes herself salami sandwiches with loads of mayonnaise (sometimes she holds the salami) and sings along to Susan Boyle's CD. When she ventures out, she likes "cruises to nowhere" and playing slot machines.

For the past 38 years, Monica has marched with the American Legion contingent in the annual Levittown Memorial Day Parade. "I'm an honorary post commander for 10 years," she proudly says. And she's a major sports fan who slams her bedroom door - cussing when the Jets or Mets lose. Last month, during the Olympics, she rooted for speed skater Apolo Anton Ohno, explaining, "he's handsome, he has a goatee."

At the dining room table, I tell her, "They used to say people like you didn't live very long."

"Oh, God," she says, giggling and looking away. Then, quickly, she smiles at me, spreads her arms and says, "Yeah, but look at me now!"

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