Finding Help for Learning Disabled : Mother Starts Foundation to Aid Others Facing Problem

“I thought I was going to give a party, sell tickets, raise millions of dollars, and give it away. Talk about being totally naive!” Carrie Rozelle says, describing how she first got involved in raising money for learning-disabled children. Her “party,” seven years ago, grew into the Foundation for Children With Learning Disabilities, of which she is president and which last year awarded close to $650,000 in grants.

Personal Aim

The foundation’s purpose, and Rozelle’s personal aim, is to increase public awareness of learning disabilities. Recently she was in San Francisco to attend a wedding and a football game--she is married to NFL Commissioner Pete Rozelle--and she says, “I’ll be in an airport, or a hotel lobby, and someone will come up and say, ‘Don’t you work with kids with LD?’ I keep a pad in my purse to take down their name, address and phone number, so I can get information to them.”

Two of Rozelle’s four children from an earlier marriage are learning disabled, and she says when the eldest boy, who is now 22, was diagnosed in second grade, she “didn’t know where to begin. A lot more people will talk about it now, but then people didn’t understand. There was no information out there.”

Although she was concerned, and financially able to pay for the best of help, she was not always able to find it in those early days. Her sons went to a procession of schools, sometimes good, more often mediocre or even bad. One that she thought was for learning-disabled students was full of youngsters with emotional problems; another, a private boarding school, “was not really ready for LD kids,” it was just filling its beds, she says.

“Now LD is a rather popular problem, so now a lot of schools are being forced to address it intelligently. There is adequate help available for these kids; I wouldn’t have said that five years ago,” she says.

Getting the Word Out

“We (FCLD) have had a lot to do with that, because our thrust has been to get the word out. The information is there now, and a lot of professionals are much more sensitive to the needs of the parents and the children.”

She defines learning disabilities as a related group of physiological problems, neurological in origin, that hinder a child’s ability to learn in the usual way, but don’t affect intelligence. People with learning disabilities have average or above-average intelligence; indeed they are sometimes gifted--Thomas Edison, Nelson Rockefeller, Winston Churchill and Pablo Picasso were learning disabled.

Generally, Rozelle points out, their problems are minimal, and not a handicap unless they go undetected. “It is estimated now that there are in excess of 10 million children in this country who are learning disabled. The real numbers must be staggering,” she says. She would like to see tests to detect learning disabilities become a part of a youngster’s annual medical checkup, and wonders why such tests are not automatic when a child enters school. “Some of the early signs can be seen even pre-nursery school,” she says.

She believes that “every school should have special education classes available for these kids. For every one of us who is lucky enough to be able to afford tuition, there must be who knows how many who can’t. Some schools now cost $25,000 a year, and that’s at the sixth-grade level. It really aggravates me.”

As with her search for help for her own children, Rozelle acknowledges that when she launched the foundation, “I didn’t know what I was starting.” United Way of America, of which she is a national board member, offered to teach her how to put an organization together, and about fund-raising and management. And she had help from some friends in high places.

“I knew I had to have a board of directors,” she recalls. “The first one I pressed into service was Pete, because I thought he would know what to do.” She signed on some friends who were corporate heads (“I knew I was going to have to raise some money”), and also “a good friend I play tennis with who understood figures. I talked her into being a volunteer, and eventually she evolved into being business manager.”

From the beginning, Rozelle had access to radio and television talk shows. “I would see the network people at parties, I’d do a show, and the phones would be ringing off the hook,” she says. “People needed information about testing, clinics, therapy, schools, at every level. We were not prepared.” So three years ago the foundation put together “The FCLD Learning Disabilities Resource Guide: A State-by-State Directory of Special Programs, Schools, and Services,” which was recently updated and greatly expanded. (For example, college listings were increased from 100 to 537.)

Resource Guide

The guide, the only one of its kind, lists schools, summer camps and programs, vocational programs, colleges and universities with special programs and services, hospital clinics, and other services in each state. There are also sections that give general information about learning disabilities, the rights of children with LD and sources of information and help. The guide is available from FCLD, P.O. Box 2929, Grand Central Station, New York, N.Y. 10163; $5 for postage and handling.

The foundation also puts out a magazine, Their World, which publishes articles and stories, poems and artwork by youngsters with learning disabilities and their parents, as well as articles by experts in the field ($2 from the same address).

A message Rozelle finds herself repeating over and over to those parents who approach her with their stories is that they should “forget guilt.” She acknowledges that at first she too couldn’t help but wonder if somehow she had done something wrong. “I quickly got over that, though,” she says. “I found it counterproductive. It is self-serving, and debilitating, and it doesn’t do any good.”

Her message to professionals in the field is that they should not humiliate parents, and should teach parents not to humiliate their children.

“I have been talked to by professionals as if I were an absolute blithering idiot,” she says. “I resent it to this day. I have a very long memory.”

Supporting Model Programs

At first, Rozelle says, the foundation “had to go looking for programs (to fund) because no one knew we were there.” No longer. Last year, FCLD supported model programs in schools, camps, recreation and day care centers, libraries and museums. Rozelle explains that “many of these kids are very creative, so we felt they should be exposed to museums, even though sometimes that doesn’t work out too well for the museum--LD kids can be hyperactive.” Other grants provide training in the link between undetected learning disabilities and juvenile delinquency to judges, lawyers, police and probation officers.