When Mitchell Levitz and Jason Kingsley were born, their parents were advised to institutionalize them. After all, their parents were told, little could be expected of their sons.
Both had Down’s syndrome, a genetic disorder that carries with it a degree of mental retardation and the stigma of being unable to learn. Emily Kingsley says she was even encouraged to tell people her baby had died in childbirth.
Both sets of parents rejected such counsel and reared their sons at home. Kingsley, now 19, and his best friend, Levitz, 22, are examples of how wrong old medical advice can be.
With the aid of their families they have written a book, “Count Us In. Growing Up With Down’s Syndrome.” They tell how they learned to achieve when there were once no expectations for them.
“I’m glad my parents made the tough decisions when I was young,” Levitz said. “People didn’t think that we were capable. . . . We can learn. We can make (the same) choices as everyone else.”
“We have the same hopes, feelings, goals and dreams as everyone else,” Kingsley said. “We want people to know what it means to be us. We are not just people with Down’s syndrome. We are individuals.”
Down’s syndrome is a genetic disorder; a person is born with 47 chromosomes instead of 46. The disorder affects approximately 5,000 births a year in the United States, according to the National Down’s Syndrome Society. It estimates there are 250,000 affected people in the United States.
Most people with Down’s syndrome have IQs that fall in the mild to moderate range of retardation, according to the society. Children with the disorder are educable to varying degrees.
The days of institutionalizing such children are long over, said Daniel Crimmins, acting program director for developmental disabilities at the Graduate School of Health Sciences of New York Medical College in Valhalla.
“Society has changed to say an institution is not the best place for any child,” Crimmins said.
When Kingsley and Levitz were born, there was already a movement among educators and social workers to work with Down’s syndrome children.
The medical profession lagged behind, Crimmins said, but within the last 15 years it recognized that these children can learn and can do a great deal independently.
Some of the life-limiting aspects of Down’s syndrome, including certain congenital heart problems, can now be corrected through surgery, giving hope for a normal life span, according to Crimmins.
Kingsley and Levitz were lucky. Levitz’s mother, Barbara, was a teacher of special needs children. Kingsley’s mother was a writer for “Sesame Street.”
Barbara Levitz and her husband, Jack, started the Parent Assistance Committee on Down’s Syndrome in their hometown of Peekskill, N.Y. After Jason was born, Emily and Charles Kingsley learned of the Levitzes and reached out to them.
The result was a bond of friendship between the families and especially between Jason and Mitchell.
Both mothers say the key to success was early intervention. “The idea was to try everything,” said Emily Kingsley, even if it meant putting Jason in a tub full of Jell-O when he was 6 months old to enhance his senses.
Jason made his television debut at age 15 months on “Sesame Street,” and Mitchell appeared regularly as well.
Joan Ganz Cooney, the co-founder of the Children’s Television Workshop which started “Sesame Street,” said in a foreword to the book that the show had been looking for ways to include children with disabilities.
The boys’ education wasn’t without hardship. Both were placed in mainstream classes in school. Levitz admits he was often teased and made fun of because he speaks slower and takes a little longer to learn.
But his two younger sisters along with the rest of his family offered sufficient support to get him through the rough spots, and then he helped Kingsley.
The book reproduces the often idiosyncratic syntax of the young men’s speech. In their introduction, the mothers explain that they did not edit the quotes because they didn’t want to camouflage their sons’ disabilities.
The book is the cumulation of three years of dialogue between the two young men and their families, and it is often brutally honest.
Levitz asks his father how he reacted when he learned of his disability. Jack Levitz replies, “Well, I cried. Big time. I was very upset.”
He says he worried his son wouldn’t be able to master Hebrew to have a bar mitzvah. Levitz says one of his proudest moments was undergoing that Jewish religious ritual at age 13 “because it was my father’s dream.”
Their efforts to enhance the rights of the disabled comes at a time when public awareness of the problem is increasing, they say. Federal and state laws now help protect such rights.
Levitz recently moved into an apartment of his own and works for the Westchester Assn. for Retarded Citizens. He’s a member of a citizens advisory panel for the county Department of Mental Health.
Kingsley is still in high school and talks glowingly of his girlfriend, Tami, who lives in Pittsburgh.
“We want to tell people to erase their negative attitudes. Get to know people,” Levitz said.
“With our abilities, we should change it to Up syndrome,” Kingsley said.