This stupid syndrome


My name 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 their own. 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 Evan. He's 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?

Chantal and Evan
Here we are together!

My 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 disability worker, but this stupid syndrome I have makes that goal quite a challenge.

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 feels!  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

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Published: April  19, 2006
Last updated: April 21, 2006