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RELATIONSHIPS : Trapped Forever in Childhood : Bill Ouderkerken of Cypress is 38 and can appear a child one minute and an adult the next. But he is making his way. And his parents couldn't be prouder.

September 28, 1993|JULIE BAWDEN DAVIS | SPECIAL TO THE TIMES

Framed in a place of prominence on Bill Ouderkerken's bedroom wall are monthly bus passes dating back to 1989 when he began riding Orange County buses.

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"I love getting to school on my own," he says, pulling his current bus pass out of his wallet and displaying it. "Isn't that a great looking card?"

For Ouderkerken, 38, who stands in the room he's called home since childhood, the bus passes symbolize a sense of hard-earned independence and self-confidence, even though his life remains closely intertwined with that of his parents, Marie and Mike Ouderkerken. Bill is developmentally disabled and has always lived with his parents in their Cypress home.

A lanky 6-foot-8, Bill is trusting and outgoing. His physical appearance belies the difficulties he faces in addressing certain day-to-day tasks; he can appear to be an adult one minute and a child the next. Shortly after birth, he suffered oxygen deprivation, which resulted in brain damage.

Caring for Bill at home has meant a lifelong commitment for Mike, 73, and Marie, who will be 70 soon. While most children grow into full adulthood and move out on their own, that has never been the assumption between Bill and his parents.

In many ways their relationship is like that between parents and young child. When Bill comes home from school--which he has attended for more than 20 years--his mother is there waiting for him. At 5:30, they all sit down to dinner and trade stories of their day.

Bill is a good kid, his mom says. He's nearly always in a good mood. They help each other in large and small ways. Marie helps Bill hang the baseball caps he loves to collect--he has 96 so far--but it's his job to keep them dusted. With some guidance, Bill does chores around the house, such as mowing the lawn.

"I would love to live on my own, but I don't think I could," Bill says. "I know about white and dark clothes, but I don't know how to separate them and turn on the washing machine. I do know how to load the dishwasher, though, and I clean my room myself."

Every Monday through Thursday, Bill gets up by himself and travels to Anaheim-based Hope University, a private fine arts college for gifted developmentally disabled people. Once there, he studies a variety of basic subjects. On Fridays, and the weekends he performs with a musical group from the school; on Saturday mornings, he likes to bowl.

Although Bill is able to manage by himself in the house during the day, he cannot stay in the house alone at night. If Mike and Marie want to go out for the evening or overnight, they need to find someone to stay with Bill.

"It's hard to find someone to watch a 38-year-old man," says Marie. "We can't have just anyone come in here. We have to find someone we know and trust, who also knows Bill."

In the evenings, Bill likes to watch TV--especially soap operas--and play his CDs. He goes to bed at 11.

"When we have company and send him to his room, he'll come out every once in awhile to show guests pictures of movie stars, which is something most 38-year-olds don't do," says Mike.

During the course of normal adult chitchat, Bill will suddenly ask childlike questions of his mother. "Mom, if they operated on the left side of my brain because it's brain damaged, would I still be living?"

"They wouldn't operate on your brain. They can't put in what isn't there," she explained. "Wow, I'm lucky I'm alive."

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Ouderkerken is one of many Orange County adults who continue to live at home because of limiting mental and physical conditions like mental retardation, Down's syndrome, cerebral palsy, autism and other disabilities.

Out of 7,400 developmentally disabled people served by the Developmental Disability Center of Orange County, 4,600 live at home, says Paula Fiebert, associate director of the center. The actual numbers of developmentally disabled are higher. According to state estimates, 1% of the population suffers from these disorders.

Those families who keep a developmentally disabled family member in the home on an extended basis are faced with many challenges. While some disabled individuals have physical problems that require 24-hour attention, others, like Bill, have mental limitations that also necessitate close supervision. This constant care makes it difficult for care-givers to go off on their own--respite care is often hard to find.

"Sometimes it's hard to see our friends who can just walk out of the house and close the door whenever they want to go out for the night or leave for vacation," Mike acknowledges.

This constant care of an "adult/child" can be challenging. "It takes special people to care for special children," says Mike. And "a lot of love and plenty of patience."

Acceptance is also very important, says Doris Walker, executive director and founder of Hope University.

"The parents who keep children at home tend to be very accepting of their kids and see them, disabled or not, as valuable human beings," Walker says.

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