By Patricia McAdams, Staff Writer, Nevus Outreach
Band-Aides & Blackboards is dedicated to teaching others that kids with medical problems are not defined by these conditions.
Joan Fleitas has been working with children and teens in hospitals for over 30 years.
Having been immersed in pediatric nursing for many years, Joan Fleitas, EdD, RN, knew that kids with medical problems wanted people to know that these conditions do not define who they are. She designed Band-Aides and Blackboards to communicate this central fact to youngsters, parents, teachers, and health professionals.
One look at Band-Aides and Blackboards will show you that the site is anchored by their stories of growing up with diseases and disorders that they didn’t ask for, don’t like, and can’t get rid of. What is amazing, she says, is the incredible resilience they demonstrate in coping, while at the same time-sharing childhood joys and frustrations with their non-affected siblings and age mates.
Long-time members of the Nevus family may remember Fleitas from earlier Nevus Outreach conferences, as she has been a popular speaker for more than a decade. Youngsters have told her of the many ongoing concerns.
Getting to know kids and what makes them tick
“Kids worry the most about teasing, isolation, fear of prognosis, and fear of being different,” says Fleitas. “And, not surprisingly, they desire to be like everyone else.
“I love kids and I thought I have a responsibility to address these themes for them. For example, I have a ton of teasing pages.”
Many people have told her that Band-Aides and Blackboards is a great site for kids with disabling conditions. But her intention is much more ambitious and far reaching. She hopes that all students from kindergarten through high school should dive into the pages of the site, as well as anyone who deals with children — family, parents, educators, and health care professionals.
Children with chronic medical issues want you to know what makes them tick, she says. They want you to know what it’s like for them at school and at home. They want you to know what they want to do when they grow up.
Stories for and from parents and siblings
In addition to a wealth of children’s pages, Band-Aides and Blackboards has a collection of stories from parents of children with chronic medical conditions. In “Finding Nemo,” for example, one mom tells of the lesson she learned from Nemo about raising her two sons with cystic fibrosis. The lesson is not to overprotect, but to encourage our children to face life courageously and joyfully in the face of adversity and suffering.
Siblings have a voice in Band-Aides and Blackboards, as well, and get to share what it is like for them to have a sister or brother with special needs.
An educational tool too
Fleitas uses Band-Aides and Blackboards to describe a number of rare diagnoses. She does this through the magic of poetry. She writes some of the poetry herself, and children send her other poems. One poem, by Madeleine Alston, is entitled “See Me,” which says it all.
Band-Aides and Blackboards has well over a hundred stories online now, as well as resources, poetry, a hospital tour, and health education related to specific medical conditions. Stories are posted to Band-Aides only after parents have given permission and children have agreed that the final versions of their stories say exactly what they want them to say.
Just saying hello
Fleitas has included e-mail addresses on many of the children’s pages, if parents give their okay, but she has some reservations about the dangers of the Internet where kids are concerned. While children have not reported receiving any strange or objectionable emails, she prefers that e-mail addresses belong to the parents. Parents then can screen all e-mails before forwarding them to their children.
Making a difference
“I hear from lots of people about my site,” Fleitas says. “I was delighted that children and their parents note the power of disclosure, and the positive difference their stories (and responses to them) make in their lives. I am aware, though, that the youngsters who write on my site do not represent all kids with medical problems, many of whom prefer secrecy to revealing aspects of their life that are difficult and scary. The kids who contribute to Band-Aides know that for them, secrecy is not advantageous. The ones who don’t write are the ones who cope with their conditions in other ways.
“Some of the youngsters will write things like, ‘This site saved my life.’ Or ‘I really didn’t think anybody could possibly understand.’ Or, ‘as a result of my page, I’ve gotten so much supportive e-mail.’ Or, ‘I’ve met other people who are also coping with this problem.’
Finding a friend
“Feeling that you are all alone is a terrible part of anything,” she adds, noting especially the importance of friendships to all of these children.
Fleitas praises the ongoing efforts of Nevus Outreach to create real communities: scheduling swim dates and other kinds of gatherings throughout the year, so kids and their families can get to know one another and have a good time.
“One thing I’ve learned from Band-Aides and Blackboards is that people are incredibly resilient,” she says. “It is perfectly okay if children don’t want to share their stories, as that is just another way of coping. But I’m hoping that through the site, these children will still learn that, ‘Hey, other people are coping with this issue too.’ ‘Look — this person went to college, and this one did that.’
“The whole point of resilience is not ignoring what is happening, but sort of accepting it and using it — like a lot of kids with nevi do — and being okay with it. What is important to me is that when children are born with a nevus, or any medical condition, or acquire one as they grow up, that it need not define who they are.
“You are much more important than that,” she tells them. “It is a piece of you, so it’s tough to ignore it. And sometimes it’s impossible to ignore it — like visible nevi.
“But that is not who you are. That’s what all these children are saying in so many different ways.”
In recognition of this kid-friendly and truly inspirational site, Band-Aides and Blackboards has received many dozens of awards for excellence — and gets more than 100,000 hits each week! If you would like to share your story, please write to Dr. Fleitas at: eat1@eau1eav1eaw1
A similar Web site, designed for adults, is Patients Like Me. This health data-sharing platform was co-founded in 2004 by three engineers from Massachusetts Institute of Technology in an effort to search the world for ideas that would extend and improve the life of a friend diagnosed with Lou Gehrig’s disease at age 29. The site was launched with the belief that by sharing their real-world health experiences, patients can better manage their conditions on a day-to-day basis, thus improving the quality of their lives.