To Parents of Disabled, Company Is a Comfort

It is safe to say that the world of 10-year-old Robert Downes is radically different from the world most of us know. That’s because Robert is severely retarded.

Robert’s mother, Carolyn, on the other hand, is healthy and intelligent. Yet, because of her son’s handicap, she too spends a good part of her life in a world radically different from the one in which most of us live from day to day.

Carolyn Downes, of Garden Grove, entered this unfamiliar realm the moment a doctor told her that her infant son had a devastating disease, Cyto Meglo Virus (CMV). She found her usually plain speech invaded by complex medical, scientific and legal jargon. She found herself wandering about in a perplexing maze of bureaucracy, where doors opened and shut with the consistency of those in a carnival fun house. And she found herself troubled by thoughts and emotions she felt most people were unable to comprehend.

In July, 1983, eight years after Robert’s disability began transforming her life, Downes and a dozen other mothers of handicapped children got together to form the Parent-to-Parent Support Project. They had become acquainted as members of a parents’ advisory committee for the Regional Center of Orange County, a private, nonprofit service for the developmentally disabled.

“We had become more and more aware of how many parents of handicapped kids were going through this situation all by themselves, not knowing where to get their questions answered,” says Downes.

“There are a lot of things I think the professionals who work with handicapped children take for granted--that they assume you know. But if you’re not in a state of shock at the news that your child is handicapped, you’re probably afraid to ask questions, for fear of sounding stupid.”

Under the auspices of the Team of Advocates for Special Kids, a privately financed, nonprofit organization for handicapped children, based in Orange, the Parent-to-Parent Project tries to help mothers and fathers cope with the complex and sometimes puzzling world of caring for a handicapped child. Parents of children of all ages and with any type of disability are encouraged to join; about 100 members are on the group’s current mailing list.

Among the project’s regular activities are monthly information meetings and “ventilation sessions,” in which parents listen to speakers and discuss their mutual concerns. The main service the group provides, however, is peer counseling. About eight members of the Project who have been trained in counseling techniques act as “supporting parents.”

Parents who contact the Project are put in touch with one of these volunteers. The counseling, much of which is done by telephone, may begin at the time parents discover their child is handicapped and may continue, in some cases, through the child’s death.

“When you find out about a child you brought into the world having a handicap, you feel a sense of loss that’s almost like the death of the normal, healthy child you anticipated you were going to have,” says Downes. “You have to go through all of those feelings and work them out.”

Coming to grips with such emotions is just the first step in a lifetime process. Robert Downes, now 10, is still unable to speak, walk or dress himself. Carolyn Downes and her family--she has three older children in good health--have gradually adjusted to the difficulties Robert’s dependency creates. It is a situation that can seem overwhelming at first, however, Downes says.

The Support Project helps with everything from medical referrals to advice on how to shop for a wheelchair.

Whenever possible, the Project matches the parents of children with similar handicaps, so they can talk over specific problems. Other concerns are shared by the group as a whole.

For instance, experienced parents of handicapped children frequently toss into their conversations a cryptic alpha-numerical sequence, PL 94-142. They are referring to a 1975 law regarding the right of handicapped children to receive a public education. Even to the initiated, however, the complexities of exercising that right can be frustrating, parents say.

“It was when Katie got into the school system that everything got really bad,” says another of the group’s founders, Mary Short, of Fountain Valley, whose 5-year-old daughter was born with the debilitating disease tuberous sclerosis.

“Even once you get into the school system, it’s very very important to keep in touch with other parents and learn about the changes that are happening. To find out about new programs, for instance, or what your rights are as far as getting a school district to pay for programs outside of that district . . . “

The group’s support when a parent is facing a critical decision is particularly important, Short says. Caring for a handicapped daughter--finding specialized child care, taking Katie to her doctor and to the neurologist--was so time-consuming that Short was fired from two jobs. For the past year, she has been employed as a legal secretary, and she can’t afford to jeopardize that position, she says. So when the time came to place Katie in a care facility, Short found the advice and support of other parents especially helpful.

“As a single parent who’s working full time, I can’t take off work and go visit every facility. Basically, I have to take peoples’ word for everything,” Short explained. “So when I made the decision to place my daughter, it was wonderful to have other parents to talk to who had already done that, and who knew about the different kinds of facilities that are available . . . who knew what they were like, from an emotional viewpoint.”

Downes concedes, though, that talking with “new” parents can be difficult. “I have mixed feelings. It brings back a lot of unhappy emotions, but I’m also excited about being able to help other parents through those same feelings. I’m happy that I can be living proof that you do get through it--and that things aren’t all black and all bad.”

In fact, one of the things her participation in the Project impresses upon her, Downes says, is that through concerted effort, things are getting better for the parents of handicapped children. And, no matter how bad one parent’s problem seems, another has had a greater difficulty to overcome.

“We’re trying to educate ourselves, as well as the new parents coming in,” says Downes. “We had one mother speak to us who has an adult son with a learning disability--I think he’s 28. She took us from when he was first in school--when there was no PL-94-142, and there was no special education--and explained to us how she solved some of the problems and met her son’s needs on her own. She showed us how resourceful you can be if you need to be.”

The project members emphasize that their group is not “a crying towel society.” They say that raising a handicapped child has special rewards and pleasures--rewards Downes feels often outweigh those of bringing up a normal child.

Short agrees.

“It’s not all discussion of problems. It’s great to be able to get together with a group of parents and say, ‘Hey, guess what? Katie learned to turn the pages of a book. And she realized she was turning the pages of a book,’ because families don’t always understand these things,” she explained.

Then, with a laugh, she added, “They don’t understand why, when my 5-year-old daughter learned to turn the pages in a book, I was willing to throw a catered party.”