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Retarded Children Can Fortify Family

Society: Because of an increased life expectancy, parents of offspring with Down syndrome seek to encourage self-reliance to ensure a grown child's well-being.


COLT'S NECK, N.J. -- A few weeks after her second daughter was born, Carole Ehlinger received a card from longtime friends. The gist of the message: "You're so lucky."

Struggling to absorb the fact that her newborn had Down syndrome, Ehlinger found the card perplexing -- although not for long.

"I didn't understand right away, but that message has really rung true," Ehlinger said. "Catherine has brought out the best in all of us."

Catherine is 23 now, a high school graduate with a boyfriend, working three afternoons a week bagging groceries at a supermarket. Adult and independent in many ways, trustingly childlike in others, she has -- like other young people with mental disabilities -- provided her parents with a distinctive set of challenges and joys.

"I remember coming home from the hospital and looking at the comics in the paper and thinking, 'I'll never be able to laugh again, " Ehlinger recalled. "If only I'd known how wonderful it was going to be."

In the span of one generation, the dynamics of families like the Ehlingers have been transformed as the life expectancy of people with Down syndrome -- the most common form of mental retardation -- increased from 25 years to more than 50.

Parents no longer assume that they will outlive their child, and the option of mental institutions has fallen from favor. Parents and child often spend many more years together than in the past, and parents face difficult decisions about encouraging self-reliance and ensuring a grown child's well-being after their death.

For Carole Ehlinger and her husband, Jim, an executive with AT&T Corp., concerns about the future are eased somewhat by their expectation that Catherine's siblings -- Christine and James -- could keep an eye on her.

The future has more question marks for others.

Maureen Maimone's 17-year-old son, J.C., also has Down syndrome, but he is an only child. Maimone worries about what might happen if she dies before he does.

"I have such a profound fear about when I'm not here any more," she said. "Who's going to think about where he'll go for Thanksgiving? Who's going to know he's afraid of thunderstorms?"

Divorced when J.C. was 5, Maimone has been her son's constant companion since his birth. Aside from one 10-day separation many years ago, when she attended a meeting in Hawaii, they haven't been apart more than three days. She wants to encourage his sense of self-sufficiency, but knows not to push too fast.

"He's extremely friendly; he talks to strangers," she said at their home in Ocean, N.J. "I try to teach him to be cautious, but not make him fearful."

J.C. attends regular classes at the local high school; he also takes special math and reading courses.

"J.C. is very popular in school," his mother said. "Unfortunately, it doesn't carry over to the weekends. His schoolmates aren't going to call."

The result is that Maimone, 46, and her longtime partner, 59-year-old lawyer Andy Kimmel, are J.C.'s weekend playmates -- a role they find rejuvenating. They go to concerts, play mini-golf, travel -- railroad museums are among J.C.'s favorite destinations.

"The challenge is getting our energy level up," Maimone said. "We're usually on the go all weekend. Sometimes we're pooped, and all three of us just hang out in the bookstore."

Maimone grew up in a large family and wishes that J.C. could have the same opportunity.

"Sometimes I think his biggest disability is being an only child," she said. "I have the finances and the time to do what I want to do with him, but he doesn't have the other stimulation. I wish he had a brother or sister to tease him, play with him."

Maimone recalled being stunned, after J.C.'s birth, at learning he had Down syndrome.

"There was no history of it in our families," she said. "We thought, 'He's not ours. It's a mistake.' It was the initial shock, and then 'Let's roll up our sleeves and learn about it.' "

She read advice books, contacted experts, founded a support group. Her life -- which includes some part-time legal work done from home -- has been demanding but rewarding.

"I have those moments where I see that it's different here, that most parents don't have to do all this," she said. "But I truly think that's a small price to pay for what I've gotten back from him. If there's any kind of plus-minus scale, it's 1,000 times on the plus side."

On most Saturdays, J.C. gets a visit from his biological father, who takes him to drum lessons. The role of day-to-day father is embraced zestfully by Kimmel, who like Maimone is divorced. He says his relationship with J.C. is more intense than with his two grown children.

"I love them dearly, but it's not the same thing," Kimmel said. "J.C. is an extraordinary person."

With Kimmel's help, Maimone is now looking ahead, talking about vocational training and future living arrangements for J.C., and about estate planning.

"Who wants to think about these things? But you have to," Maimone said. "If you don't make plans, they just get dumped somewhere."

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