Dialogue: A look at life with
a bleeding disorder.
Topic: Summer Camp
Is it better to send your child with a bleeding disorder to
a camp especially for children with bleeding disorders, a camp
for children with different disabilities, or a camp not based
on disabilities?
Bob Graham has Hemophilia A and is the Director
of Camp High Hopes in the state of New York for boys with bleeding
disorders and Camp Little Oak for girls with bleeding disorders.
Edward Sotherden has Hemophilia A and is a Matrix
Health Regional Care Coordinator covering the Northeastern States.
Ed attended camp as a child and is now a volunteer camp counselor.
What kind of camps did you go to as a child?
Ed: I spent a couple years
as a young child at Camp High Hopes (for boys with bleeding
disorders). I also spent a few years as a young teenager at
Camp Hole in the Woods, one of the Paul Newman camps for children
with disabilities. I never went to an ordinary camp for a week,
but I did do weekend camps with the Scouts and my church.
Bob: I spent several years at an Easter Seals
camp for children with all disabilities, and one year at a Kiwanis
camp for children without disabilities. There was no camp just
for children with bleeding disorders in New York when I was
growing up.
What was it like to go to camp with children who had different
disabilities?
Ed: Disabilities camp, like
the Paul Newman Hole in the Woods Camp, was great for me as
a child. At bleeding disorders camp, surrounded by other boys
with hemophilia, I pitied myself because I was in worse shape
due to inhibitors. At Hole in the Wall, I learned from other
children with all types of disabilities and grew to have less
self pity.
Bob: Sometimes I didn’t
feel like I belonged because compared to a child who’s
blind or has cerebral palsy I was normal. But in other ways
it did help me feel like I was lucky to only have a bleeding
disorder.
Do you think there is an advantage to going
to one of these camps?
Ed: They offer excellent medical
attention, which allows the children the chance to be active
like all kids, because they provide a safe environment should
anything happen.
Bob: You can see how children
with much worse problems than you learn to live and be happy
in spite of their problems.
What is an advantage of going to a camp just for children with
bleeding disorders?
Ed: Bleeding disorders camps
also provide excellent medical attention from the nurses who
volunteer at camp. Also, because the counselors have bleeding
disorders too, they have good eyes to catch injuries early and
make sure they are treated quickly. Scrapes, cuts, bumps and
bruises are all a part of childhood. Balancing the “kids
will be kids” approach with the desire to prevent injury
and joint damage is important and bleeding disorders camps provide
a good mix.
Bob: The children and their
families don’t have to worry about getting the right treatment
for bleeds, prophylaxis or a port. The children can do more
things – like play sports or try repelling – because
we know what’s safe for them, or how to make it safe.
The children can feel “normal” because everyone
has a disorder like them.
What can a bleeding disorders camp offer a child that other
camps can’t?
Ed: Most camps for children with bleeding disorders
are run by camp directors and counselors who have hemophilia.
I think that is the best part about camp; the kids get to see
grownups with hemophilia that have been through many of the
same trials.
Bob: When a child with a bleeding
disorder meets other children who share similar experiences,
fears, and hopes they don’t feel nearly as isolated. They
can better accept their disorder. When they meet adults like
them, the children get to see how they can live and cope with
their disorders, which helps the children get on with their
lives.
Are there other advantages to bleeding disorders camps?
Ed: Bleeding disorders camps
are important because they give kids the chance to hear about
life experience from others just like them. It is especially
rewarding to see when older campers take younger ones under
their wings. You can see the confidence it gives the younger
ones and the pride the older campers get in helping out.
Bob: Absolutely. The sharing,
learning and growing a child does at a bleeding disorders camp
can change their life, and they can’t get the experience
anywhere else.
Does going to a bleeding disorder camp make a child focus
on being “different”?
Ed: No, it teaches them self
reliance, which helps them fit into the world more easily.
Bob: No. The more a child understands
about their disorder the more they can do, the more self confident
they will feel and the happier they will be.
Do you think it’s better to go to one kind of camp or
another?
Ed: I believe that decision
needs to be made for each child by the parents and healthcare
workers who know them best. A child who depends too much on
Mom and Dad could benefit from bleeding disorders camp where
they can learn to infuse and talk to older kids. An inhibitor
patient who struggles with constant bleeding could benefit from
a disabilities camp by seeing that maybe their life isn’t
as bad as it sometimes seems. A child who rarely bleeds and
plays sports for their school team may do best at an “ordinary”
basketball or baseball camp.
Bob: That’s a pretty
sharp answer for a guy with Ed’s history of head bleeds.
(Note from Ed: Bob is joking.) I agree the decision really depends
on the child. Which camp is best may be different at different
ages as well. However, I also think every child with a bleeding
disorder should spend at least three summers at a camp for bleeding
disorders because these camps are so unique.
What was it like for you to go to a camp not based on disabilities?
Ed: It wasn’t always
easy for me to get in because of my limitations from bleeding
and joint damage. But it was important to me to go to the same
campouts the other boys in the neighborhood, or my school, were
attending.
Bob: One year I went to a non-disabilities
camp. They had no idea how to deal with a bleeding disorder
so they didn’t allow me to do much that was physically
active. After that I didn’t want to go back to a camp
like that.
If you could be a child again, which camp would you most like
to go to?
Ed: I would go back to Camp
High Hopes. I stopped going because it coincided with the week
my family went to the shore. Returning as a counselor, I have
had the opportunity to see how camp enables some of the guys
to develop lifelong friendships.
Bob: I would want to go to
a bleeding disorders camp so I could have the chance to just
be one of the kids - that, and I could finally sleep late at
camp for once!
