A website by, for and about children with illness
A lot of wisdom has gone into the 250-page website called, "Bandaides & Blackboards - When Chronic Illness ... or Some Other Medical Problem ... Goes to School." And most of that wisdom comes from children.
Gently guided by Dr. Joan Fleitas, an assistant professor of nursing at Fairfield University, the children teach others about living in bodies that don't always behave, and how it feels to be growing up in a world too frequently insensitive to their needs. Arranged on brightly colored and inviting pages, visitors to the website can choose to click into a frog pond or click on a hopping frog to find information for kids, teens or adults.
As the website has grown and become recognized for its quality, over 800 individuals and organizations, the major search engines, and several teaching hospitals have created electronic links to it from their own web pages. Dr. Fleitas added a "Site for Siblings," who often feel alone with their frustrations and fears, as well as a list of books they might find helpful. While initially conceived for elementary and middle school children, she began to receive narratives from adolescents as well, and so added a "Teen Site."
"I wanted to give these children a voice and a way to break through the isolation so many of them feel," says Dr. Fleitas, who teaches pediatric nursing and supervises University students in their clinical rotations at Yale-New Haven Hospital. "That sense of isolation can get compounded when families try to keep the child's illness a secret. Secrecy is so sad. It suggests to children that something about them is awful; it reduces the amount of social support and services available to them; and it consumes an enormous amount of energy on everyone's part."
Dr. Fleitas began compiling narratives from children during her doctoral work at Columbia Teacher's College. "The thing these kids want most is to be normal," she explains. "Initially I was afraid they might not want to be associated with a website concerned with things they wish they did not have." But that concern was soon quelled when she started receiving stories both online and by mail that children (some with the help of their parents) wrote about what it's like to have leukemia, chemotherapy, cardiac disease, muscular dystrophy, lupus, arthritis, Crohn's Disease, amputation, cerebral palsy, Rett's Syndrome, and so on.
Perhaps what made Dr. Fleitas so attuned to the struggles of children with illness was her own experience with her daughter Amanda, who has Down Syndrome and alopecia (baldness). "The stigma that accompanies such conditions becomes an illness on top of illness, and a double burden for these kids," she notes.
Her work in establishing "Bandaides and Blackboards" has been an effort to sensitize people to what it's like to grow up with differences. One student with cystic fibrosis, for example, wrote of her gratitude when her teacher allowed all the kids in class to have water bottles on their desks. "It made me not feel weird," she said, referring to her need to have water on hand.
Another youngster was delighted when each student in class had a different day to tell "What's Special About Me." Not only did it give her a forum to talk about what it was like to have had 22 operations, but it made her the "go to" person for any child in school going into the hospital."
Dr. Fleitas says, "I have been the student and children have been my teachers." The most important thing she says she has learned is that "they are first of all children, with the same needs, joys, hurts and misconceptions that all children share. Their chronic illness or other medical conditions are part of them, but do not define them. I hope they will learn as they grow that they can be proud of who they are and that what's going on with their health is part of that pride, not something to be ashamed of."
Media Contact: Nancy Habetz, (203) 254-4000, ext. 2647, firstname.lastname@example.org
Posted on August 1, 1999
Vol. 32, No. 42