Welcome, parents, to
this page that
describes my project, a project where your children
will be the experts, and I’ll be helping them to tell their stories.
IT ALL ABOUT?
My goals in
creating and maintaining this website are to:
I’d like to
with your children over the World Wide Web to learn about their lives.
To learn about their going to school, and making friends, and living
chronic medical problems...And about whatever else they’d like to tell
me. You are welcome to help them answer the questions that I will pose
to guide them, but I'd like the content to come directly from the
others to the
experience of growing up with 'differences'.
age-appropriate information about chronic medical problems in order
that those who live with them might feel somewhat empowered and less
afraid, and that those without might learn that their friends and
classmates are most importantly children, and only secondarily, sick or
the stigma that too often accompanies illness and disability with
attributes associated with being 'special'.
the incidence of
teasing among children as it relates to illness and disability.
children with some ideas
about how to treat one another in school, regardless of their
similarities or differences.
and health care providers to issues raised by children, the true
experts of the website.
forum for children's stories, poetry and essays.
for themes that recur in the stories that I receive, and from them,
developed an educational story for young children, as well as a number
of interactive pages throughout the site. I consider Band-Aides and
a work in progress, and hope to receive more narratives from children
"the word spreads". Their words are so touching and critically
to the project's goal: that of sensitizing others to what it's like to
grow up with medical problems.
YOU DO WITH ALL OF THE INFORMATION?
your permission, I will help your children (should they be interested)
tell their stories for inclusion on my website, Band-Aides and
Blackboards, with the hopes that their words will educate both children and adults
to what it's like to grow up with medical problems. In addition to the
stories, I plan to use the site to
children with age-appropriate
information about health.
children and adults to the issues that accompany illness.
on-line resources to address the needs expressed by you and your
YOU PROTECT THEIR PRIVACY?
require parental permission, as well as child assent, to any material
published from a child.
the children will not be anonymous if you permit the use of their
names, I will handle all of the data that
I receive in a confidential manner.
the identity of the children
nor any identifying information will be used unless you and your
prefer to be identified by name.
- I will
suggest that email links be directed to you rather than to your
children in order that you might screen notes sent their way.
that the children
communicate to me will be used exclusively for the purposes outlined
your permission and
understanding that their identities will be known, I will include
of them at play, in the hospital, with their sisters, brothers,
whatever and whomever they'd like others to see! (Of course, if other
children are featured, I will require their permission and that of one
of their parents).
of their pictures
or any individual stories that they'd like published will of course
the degree of anonymity afforded. I will be happy to include their
or unsigned masterpieces, with your permission.
ANY RISK INVOLVED?
- There is
a risk that children might feel some anxiety as they recall
memories and events related to their illnesses. My experience with
has been that rather than anxiety, they are excited about actually
able to teach their classmates what they deal with and how they learn
to live with it.
Internet is a powerful medium for good, but it can also be dangerous.
Should any child receive questionable or negative email, I advise them to let you
know, to let me know, and to definitely not answer the mail received. In the seven years since
inception of this web project, no child has notified me of receiving
any such mail. Conversely, I have enjoyed many letters telling me of
the incredible support your children have received in relation to their
know that should you or your children request that their stories be
updated, edited or removed from the site, I will immediately do so, at
any time, for any reason.
HOW DO I
GIVE MY PERMISSION?
consent form and then drop
me a line with your permission for your children's participation.
let me know if it's OK for pictures to be published and for a link to
direct mail to you or your child. I can receive pictures as e-mail
attachments, or you can send them to me at the address below.
I hope that you'll be interested in the project, and will forward my
invitation to your children.
have any questions or concerns.
for your assistance and your support of this endeavor!
Fleitas, Ed.D., R.N.
Professor of Nursing, Lehman College, CUNY
New York 10468
updated: March 27, 2009