is Chantal. I'm so happy that you're visiting my page, because
I think you can make quite a difference in changing the way people
behave around kids like me who seem different...through no fault of
I'm 18 years old. Unfortunately,
when people see me, the first thing they notice is NOT that I'm 18, but
that I do not look like the other kids they know, and I think that
makes them uncomfortable. Fortunately, I have one friend who likes me
for who I am. That about says it all. She keeps secrets, she never
laughs at me, and we have good times together. When I think of her, I
feel happy inside. I wish I had more friends like that!
Actually, I do. I forgot to tell you about my boyfriend
amazing...helps me when I need help, and looks after me when mum's not
around. I love him, and I now know what love means. Isn't it grand?
mum and dad run a home church, and I enjoy
my time there, probably because I feel like I'm one of the gang, a
very nice feeling. My
dogs make me happy, and we have great fun together. I love it when my
mum and dad play games with me, too, and when my sister Michelle and I
watch TV. One of my favorite activities is crafts. Why, I even made a
teddy with my mum's help! I would love to become a
but this stupid syndrome I have makes that goal quite a challenge.
Here we are together!
You see, I have something odd
called Rett Syndrome. It's a rare genetic neurological problem that
makes me do some things that appear quite strange to people who don't
know me. Like repetitive hand movements. Sometimes I rub my fingers
together, and other times I push them on things. At times, I bite my
arm (believe me, not intentionally!), and the kids at school ask me if
I'm hungry. I
also occasionally have fits (convulsions). If I could stop the
movements, and the fits, I would, because people are quite mean to me
when they see me as different. They often laugh at me and talk behind
my back. Sometimes, they ask what's wrong with me, and when I tell them
I have Rett syndrome, they laugh even harder. Imagine how that
I want so much to be like everyone else in the world.
One time the kids in the school
yard shoved me against the wall and said, "come on, hit me", and then
they said, "oh, that's right, you can't", and they walked away
laughing. Boy, did that ever hurt my feelings. My mum told the
principal about it and he yelled at the kids. I just wish they
understood what it's like. That's why I'm telling this story, to help
you learn that I may behave differently, but inside I'm just like you
are, happy, sad, funny, frustrated, confused, excited, you name it, I
have all of those feelings.
The good thing about school is
that the teachers are really nice. And the good thing about life
is that there are people in the world like you, who want to understand.
Thanks for visiting my little page on the web! Chantal
Would you like to learn more about
Fleitas, Ed.D., R.N.
Professor of Nursing, Lehman College, CUNY
New York 10468
Published: April 19, 2006
Last updated: April 21, 2006