Severely disabled rearing children

Original Print Date: August 5, 1990

Just 20 years ago, adults with cerebral palsy or mental retardation rarely married or had children.

Usually, they were consigned to state institutions or isolated at home, and if a woman did get pregnant, her baby might have been taken at birth to be adopted.

Today, as more people with severe disabilities are raising families, child-development specialists are looking closely at their children.

"In society, generally, there is still a taboo on mentally retarded people being parents," says Alexander Tymchuk, a UCLA professor and adviser to the President's Committee on Mental Retardation. "There is almost a limit on their citizenship."

He reels off some prevailing myths: that retarded parents' children will have the same disabilities or will develop them; that retarded parents abuse their children; that they cannot learn to care for them.

He counters those notions with results from ongoing research.

"The problem is not inherent in the mother or the father," says Tymchuk, who notes that people with severe genetic problems, such as those with Down's Syndrome, are infertile.

Most people with cerebral palsy and mental retardation have normal reproductive systems. But cerebral palsy and most mild forms of retardation are not inherited.

No one knows if the children of such parents will suffer from an environment that is not enriched.

"Children are remarkably resilient," says Ken Beauchamp, a developmental psychologist at Stockton's University of the Pacific.

"If you want a child who's going to be accepted by Harvard, you need a home filled with books and newspapers, and you need to talk about news events daily. But is that required? No. A child can be a normal, healthy child in other situations."

Stevanne Auerbach, Ph.D., a child-development author with a background in special education, says, "Being disabled alone does not necessitate their ineffectiveness as parents as long as the child is encouraged to play with other children, is enrolled in some kind of early child-development program and is provided with stimulation, love and the support of the family."

The research of UCLA's Tymchuk, though, shows there could be greater implications with parents who are mentally retarded.

Sometimes they inadvertently ignore their baby's needs for good health care, stimulation and emotionally development, he says.

They might forget to hold or feed the baby, for instance, or they might not interact enough.

"Generally, the cognitive delays don't appear until language starts to appear," says Tymchuk. "What happens is that babies naturally start to make noises. If the mother just sits there quietly, with no response, then nothing happens. With no language stimulation, you will see a marked deterioration."

Studies show that fathers, friends and family members, even day cares, can provide the necessary stimulation to reverse the deterioration.

Tymchuk would rather prevent the developmental and resulting behavioral problems, however, with good parenting education.

"The real problem," he says, "is that society is not willing to provide services to bring them up to the level of skills necessary to provide care."

He hopes that will change soon.

The U.S. Department of Health and Human Services has approved a recommendation from the President's Committee on Mental Retardation that federal funds be set aside to help mentally retarded parents.

Local agencies say they could use the help.

"We're seeing more of our clients becoming parents," says Liz Oakes, supervisor of adult services for the state-funded Valley Mountain Regional Center.

"They are folks who want to be like everyone else, and they really love their children, but they're lost. And that's a real problem, because we offer only minimal parenting training."