Janice Light leans over and points to an interviewer's pad. "Look at what you're doing. You're writing to disseminate information to other people.

"We write to make notes to remember things. We write for lots of reasons.

"For people who have severe communication disabilities, there's added importance. Very often they use writing as their channel of communication. If they can't speak, and they want to be able to tell you things, to tell you absolutely anything that occurs to them, they need to be able to write and spell.

"And in terms of enjoying life—look at the restrictions. For you or me to just pick up and go somewhere, that's a fairly easy matter. But people who have severe physical disabilities may not be able to travel, they may not have access to buildings, so access to knowledge—through reading—may give them experiences."

According to Light, approximately one percent of American children can't communicate through speech. The reasons are many: congenital disabilities like cerebral palsy or autism, strokes, degenerative diseases like muscular distrophy, birth trauma or premature birth, or head injuries from a car accident or a fall from some height. Parents and technicians have devised ways to help: from homemade notebooks full of necessary handwritten phrases ("I need oxygen") to the high-tech portable computer systems which provide recorded or synthesized voices at the touch of a key.

Unfortunately, "kids with severe communication disabilities end up having literacy problems as well," Light notes. "We wanted to backtrack and ask, What's happening at the early stages? Are they entering school with the foundations that they should have? We can't afford to have them be behind from the beginning," she adds, "because everything's going to take them longer in terms of learning."

In a study comparing families of disabled and nondisabled kids, Light and her colleagues found that "both had lots of books and magazines around, and lots of family members modeling reading and writing, for functional purposes and for enjoyment.

"The differences set in when it came to access of those materials. Children with physical disabilities are not able to walk over and grab a book and run up to their mom or dad, grab them, and say, 'Read to me.' These children have to wait. They're left without a way to initiate things. Even if a book is put in front of them, it just sits there. They can't turn the pages."

The problem is not that the parents don't try. "One of the shocking things to us was realizing the caregiving demands," Light says. "Parents of nondisabled kids, for example, reported that their kids spent about 90 minutes a day eating—a minimum amount of time—versus more than three hours for parents of disabled kids. And that's parent time, too. The parent is involved in the feeding. And until your children are eating well, it's hard to worry about whether they're reading or not."

When parents and children did sit down with books together, Light saw another difference. "Parents of nondisabled kids reported that their kids asked lots of questions about the book, pretended to read, turned the pages. Parents of kids with disabilities reported that their kids were more caught up in the mechanics of turning the pages or seeing what's under the flap and weren't as involved in asking questions about the text or talking about the meaning of the story."

Videotaping some reading sessions, Light learned why. "We saw parents really dominating the interactions, even when the book was very familiar. They did almost all the speaking. Kids might do something minimal like nodding or pointing, even though cognitively they were capable of much more. With nondisabled kids, once the books are familiar, they start to be the predominant interactors. They tell you the story. Their parents take a much more minimal role in the interaction. We didn't see that shift happening for the disabled kids."

Wondering why, Light analyzed the "turn-exchange time"—"the time from when I quit talking to when you start your turn"—between parent and child. "Our normal 'turn-exchange time' is about 2 to 3 seconds. We've found that kids with disabilities need as much as 30 or 40 seconds—much, much longer—and parents are uncomfortable with that. They have trouble waiting for the child to get the meaning across. Yet we found that silence is incredibly effective in getting kids to participate. All they needed in many cases was time.

"Just think of children who can't speak. If they're asked a question, they have to think of the answer and then figure out how to express it and then control their body to do it. For many of these kids that's difficult."

Light and her colleagues are currently exploring what social skills such children might learn so that they will be given the time they need to communicate. "People assumed that whatever a speaking person would need to communicate effectively is what these kids need. But there are some fundamental differences. One of the skills we're looking at, for example, is how to put people at ease. Most people's first reaction is discomfort. We've got one videotape, for example, of a little boy who's involved in the study going up to the counter at a fast-food restaurant and the woman at the counter walking away, because she doesn't want to deal with the situation, doesn't know what to do. Obviously, that's something this little guy is going to confront all his life, so he needs ways to introduce himself to her and to put her enough at ease with him and the way he communicates that she'll at least take his order."

Janice Light, Ph.D., is associate professor of communications disorders in the College of Health and Human Development, 217 Moore Building, University Park, PA 16802; 814-863-2010. Her collaborators were Alison Kelford Smith of McMaster University, and Penn State research assistant Cathy Binger. Reported by Tina Hay.