By Valerie (Simon)
This is a copy of an e-mail sent to the K-T Support Group e-mail list. It is re-printed with permision of the author.
Talking to kids about K-T
Dear Sibelia,
As a grown woman of almost 43, when I saw your message yesterday
regarding talking to your son, I started to reflect on my own experiences as
a little girl who had a "very strange looking" and different left leg. I
was on my way to yet another type of trial treatment for pain control and went
with my mom and discussed the situation with her, as she was the one who
could best recollect my very younger days. While she and I may not see
exactly things the same way, I have to agree that the way she treated the
situation as a young child was best for me in the long run.
Basically, I received no special attention for it at all (unless it was
acting up, in pain, bleeding, checking out a new doctor or treatment
occassionally, etc.). I too, was always told that it was a "birthmark" and
that became the simple and standard response. Other little kids with very
few exceptions, are oblivious to massive differences as soon as they are
exposed to it and given the short explaination of "it's a birthmark" and
then everybody went about their business and I was never excluded or treated as
an oddity--perhaps it was my infectious smiling and laughing that helped. I
was fortunate to have grown up in the same neighborhood with the same kids and
it was in the 60's when little girls couldn't wear pants to school so there was
no way to hide it, which was probably a good thing. I recall many wonderful
summers of attending regular summer camp (wearing shorts, swimming, etc.)
doing all the things that other children did and recall a very happy
childhood. Even my older brother used me as an occassional punching bag as
siblings often do when annoyed with each other, so he treated me no
different, either. Although I remember trips to some "specialists", mom
made no special compensations for me unless it needed tending to and in the long
run, I think that was best, as I look back at those years as terrific times.
Trips back from doctors and treatments did warrant special treats, as any
loving parent would do for any sick kid, but as soon as it was better, it
was back to life as normal.
It wasn't until the 8th grade when the school allowed girls to wear long
pants that I began to "hide" it. Perhaps that wasn't such a great thing.
It was then, that it became more of an issue of being acutely aware that I WAS
different and never did I feel comfortable again to bring it out (well, not
until my 30's and even then it does bring on a feeling of great
embarassment, until I have gotten to know someone well and even then, they don't seem to
notice it once they know ME).
As my mom and I were discussing this yesterday, we both agreed that the
pants issue was probably one of the downfalls of my "wonder years". Little
kids would probably not notice if one of their little friends grew an extra
head...her quote...and from my experience, she is probably right. Bottom
line, the less hiding it, the less one feels (especially children) that
there is something to hide, thus they are not "different" or sickly. In my whole
experience of early childhood, there was only one little boy who "picked on
me" and he had a deformed ear, which I never made fun of in return. Looking
back, I realized he must have been uncomfortable with himself and felt
"different" and needed to find someone else (much worse) to take his
frustration out on.
I appreciated the comment of teachers explaining tolerance. That should
be done no matter what the circumstance of anyone. Chirldren are highly
resistant and resiliant. Far more than us "adults". I was never told I was
"special" because of my leg, but "special" for my talents, abilities, being
adorable, funny, or whatever a parent chooses to focus on the positive
qualities a child has. It's almost strange looking back at the young years
and realizing that I actually have to remember that I had a very
debilitating ailment which no one else I ever knew had (until finding all of you on this
web site). I thought I had a very normal (and happy) childhood. Even
attending ballet class, when I'd have to come home and soak off the
blood-stained pink tights in a bathtub and pull parts of my leg off with it,
(Did have to give up ballet due to that), but was still not treated as if it
were not "normal" for me.
As my parents were divorced when I was very young, my father had a
completely different attitude towards my leg. He used to take pictures of
it (to monitor it's changes, who knows...but it made me very uncomfortable and
embarrassed). When it came to buying clothes for special occassions, mom
would buy me pretty little short dresses and dad would buy me fancy pants
outfits. It sent the message that there WAS something wrong with me and
that I should hide it and on one particular occassion I remember, I was in
terrible pain, practically climbing the wall literally, and mom was taking
care of me in the usual method..resting, some pain meds, trying to take my
mind off it with singing and reading...but still not overracting. My dad
came over and saw the pain I was in and began to sob and kinda go
hysterical, which only made me feel worse for him (and me) and embarrassed and
frustrated that I had upset him so much and I actually tried to calm him down and tell
him it was OK. Mom got very upset with his reaction and I hated that I
seemed to be causing all this fuss and I resented my dad so much at that
time I just wanted him to go away. That moment stands out so clearly. Children,
sick or normal, don't want to cause their parents pain, even through their
own, and I strongly believe that treating the situation as much as possibly,
as "normal" is the best way to go. Focus on all your son (or daughters in
the case of parents that are reading this) does well, enjoys and with love,
fun and joy and they will have as "normal" a childhood as any kid. While I
understand that occassionally lots of attention does need to be focused on
the K-T and related problems which flare up, the less of a negative focus
placed on it the better. The less "fuss" the parents make over it, the less
"different" the child feels and it's almost amazing that when I look back
upon my childhood, I almost hardly don't remember the problems associated
with it, but the fun and good times had.
Adolescence is a whole different story and that's luckily quite a ways
off still. That brings a whole different set of problems, but let your
child enjoy as much of childhood as possible and they can look back with as much
joy and normalacy as I did. Wishing you all the best and I hope my
experience has helped a little.