Kansas City Star

Just as Christine Perlinger of Overland Park, Kan., sat down to eat her bowl of cereal one morning this week, she heard her two young sons, Brendan and Noah, whooping it up in their bedroom down the hall.

Leaving her cereal on a living-room table, Perlinger carried her 4-month-old daughter, Gretchen, down the hall to the boys' room.

She found that 3-year-old Noah, a chubby-cheeked bundle of energy, had climbed out of bed and was playing with his plastic "Toy Story" action figures. Four-year-old Brendan was yelling for Noah to hand over Woody the cowboy.

But Brendan hadn't climbed out of bed because he can't climb. Brendan has cerebral palsy and relies on others to lift him, carry him, sit him up or stand him up on his own two feet. This morning his mom had already unhooked him from the feeding tube that each night carries a liquid nutritional supplement into his stomach as he sleeps. Brendan lay on his back, waiting for his mom to help him make his first move of the day.

Blue-eyed Brendan, a mere 35 pounds, has lived with the tiny tube in his belly for nearly two years. He was only a few months old when doctors told Perlinger and her husband, Daniel, a computer consultant, that their firstborn has cerebral palsy.

"They told us he'd never walk, he'd never talk, he'd be in a vegetable state forever," says Perlinger, 33. "Can you imagine?"

Their lives now revolve around Brendan, who communicates with a lot of pointing, eye contact and the 80 or so sounds he uses as words. During the day, while her husband is at work, Perlinger feeds, bathes, dresses and watches Brendan constantly, as she does for her newborn daughter. Like any mom with three young ones in the house, the former day-care provider is in constant motion.

When Perlinger saw recent news accounts about a Pennsylvania couple that left their 10-year-old son with cerebral palsy at a Delaware hospital because they felt they could no longer care for him, she says she wasn't horrified, just sad.

"My thought was people can't judge," Perlinger, 33, says. "I'm not saying they were right. But you can't judge unless you're in their footsteps."

Other local parents of children with disabilities share the sentiment. While they don't condone what the couple did, they fall short of condemning them.

As onlookers, these parents suggest that the couple had reached some sort of crisis, a desperate place that some of them know all too well.

"I think if I didn't have a child with a disability, I'd probably feel angry," says Janet Dailey of Grandview, Mo., the mother of 5-year-old Shelby, who has cystic fibrosis, and 3-year-old twin boys. "But if you know some of the stresses, some days it really is hard to cope."

The emotional, physical and financial toll of caring for a child with a severe disability can crush families. These parents learn to do without - without sleep, without evenings out, without baby sitters because lots of people are afraid to care for children with medical needs. They're all members, as one parent put it, of a club they never wanted to join.

And there's this grim yardstick: Research often cited by health-care professionals contends that the divorce rate is higher among couples that have children with disabilities.

Burnout, which most parents deal with at one time or another, has even more dire consequences for parents whose children need their undivided attention 24 hours a day, 7 days a week.

"Every family has its own level at which it says I can't do this anymore because this is a constant demand," says Doris Weber, who runs LifeCare Planning Inc., a nonprofit group in Kansas City that helps parents make long-term plans for their children with disabilities.

"That's why we have to be very cautious when we're working with families to be looking for that, because families are very reluctant to tell you they are there. By the time they are there ... parents are just exhausted.

"I have learned to be very cautious in my criticism, because none of us knows what that endurance level is for each family."

It's that stress that often sends parents seeking information, counsel and consolation from support groups and even in Internet chat rooms, where parents now can log on and commiserate in cyberspace.

The Missouri Developmental Disabilities Resource Center in Kansas City, a clearinghouse of information on disabilities available to parents and the public, started a chat room for parents on its Web site last year.

Professionals who work with the families say that simply reaching out and talking to someone else, other parents, their own family members, friends, social workers, is critical.

There is a plethora of support groups available to parents in the Kansas City area, and new ones spring up often. Children's Mercy Hospital later this month will begin training volunteers to staff a Parent-to-Parent group for families caring for children with cystic fibrosis.

Sometimes, though, parents are too embarrassed or uncomfortable to talk about their own needs. "I would have a hard time having empathy for this family, because there are a lot of supports out there," Jenny Hatfield-Reed, who works in the family support department at the United Cerebral Palsy Association of Greater Kansas City, says of the Pennsylvania parents who abandoned their son.

"They did not choose to look any further when they reached the end of their rope. What's the old saying? "When you reach the end of the rope, tie a knot and hang on.' "

Jodi Arnold of North Kansas City wanted to throw a lifeline to other families like hers when she started the Families Supporting Families group in 1995. She is the mother of 7-year-old Matthew, who has severe cerebral palsy. Matthew cannot speak, has limited use of his hands and negotiates his world, including his first-grade classroom, in a wheelchair.

Arnold's group, which helps more than 100 families in the metropolitan area, meets once a month, sometimes over potluck dinner and often with a guest speaker.

They don't meet to wallow in self-pity. Rather their purpose is positive.

"When we gather together as parents, there's always someone to lift you up," says Arnold, 32, an administrator in grant development at the University of Missouri-Kansas City's Institute for Human Development.

Christine Perlinger finds much of her support closer to home, from her husband, other family members and her Roman Catholic faith. Often the boost comes from Brendan himself.

After the year of crying and feverish research that followed her son's diagnosis, Perlinger and her husband decided to think positively.

No, Brendan can't sit up by himself, can't feed himself and is almost certain to spend the rest of his life in a wheelchair. But his smile is wide when he sits in the colorful choo-choo train chair built by his dad and plays on his laptop computer.

And he giggles when his mother hangs him upside-down, part of his physical therapy routine designed to stretch his leg muscles.

His parents saw joy in his eyes when he was a baby. "We knew he had a personality. I guess that's what kept me going, knowing something was in there," Perlinger says.

It is her sustenance. On this day she certainly didn't get it from her bowl of cereal. It sat soggy and uneaten all morning.

Copyright 2000 The Kansas City Star. All rights reserved.