I’m giving you this because I want you to understand more about me. You’ll see I am just like everybody else in your class in lots of ways, but in some ways, I’m not the same. I need you to know how I am “different” from the other kids in our class so you can help make school a safe place for me.
I have Moebius Syndrome, which means that I have a paralyzed face. I was born with it. I can’t smile, close my eyes completely, blink, frown or show any facial expression. Believe me. I would have much rather been born with something else because it really hurts at times to have this! Maybe the hardest part about Moebius is that it is so rare and hard for others people to understand. Who ever thought that somebody could never smile?
Besides the facial paralysis, kids with Moebius can be affected in many other ways – speech difficulties, missing or webbed finger, clubfeet – and a lot more.
The hardest part about having any disability is when people are teased, looked ‘down’ upon, or thought to be “weird” or different. I can feel really embarrassed about having Moebius at times, and I’m still learning how to handle this. Teacher, I really need you to understand how important you are in helping me to be the best I can be! I have all the same feelings, needs and emotions as anyone else – but I can’t show them on my face. Help me to use my voice and body language so that people can read my feelings through them. And help others to know that we ALL have differences that need to be respected.
These are some of the things I have trouble with, in having Moebius…
• My face always looks the same, no matter HOW happy or sad I am – so please know that my feelings are just as real and strong as everybody else.
• I sometimes feel really awkward when pictures are taken, because I can’t smile. Maybe, instead of saying, “SMILE!” you could say, “Look CUTE!” or something else. Maybe we can all “not smile” for the camera sometimes?
• Because Moebius is so rare, I feel very alone and different at times. Did you ever feel all alone or different? Maybe we need to learn about times when other people felt all alone and different, and how they helped themselves – and others. I bet there are many famous people who once felt alone and different too! Don’t you think learning how to handle hard feelings is something important to learn?
• When I eat, I can’t shut my mouth completely so food might collect on my teeth. Can you gently remind me when this happens …
• I can’t shut my eyes like other people so I roll them back in my head.
• My speech may not be as clear as other kids’ speech, and my face looks different when I speak. Please give me time to answer your questions though! And remind others that they need to listen, not ‘stare’
• Kids may look at me funny or tease me because I look different. This can hurt so much! Please help me learn ways to deal with this! And please help us all know better ways to get along with others!
• Sometimes people may think I am dumb or not interested because I don’t show facial expression. Help the others in our class to ‘see my emotions’ through my words, gestures and body language.
• My eyes don’t “follow” balls in the air, so playground games can be hard. Can you help me find something at recess that I am good at?
• It’s important to ASK ME if you don’t understand what I am saying, or how I feel. I’d rather you ASK ME a question (because I have to learn how to live with Moebius!) than not ask me anything.
I’m not the only one on earth with Moebius – or even with a disability!
People in many states have enacted laws so that schools teach kids about people with disabilities. Maybe our state already has a law about “Disability awareness” or “Disability History”. In 1991, the United States enacted the Americans with Disabilities Act. This law says that people with disabilities can go to work and school and so many other places, and that all they need is some help at times to do their work or to go to the store. We have this law because, without it, people DISCRIMINATE. Ignorance is never good!
Grownups with Moebius (and so many other disabilities) have shown parents that it is really OK to have a disability. There are grownups who have Moebius who are doctors and nurses, teachers and professors, librarians and truck drivers. I know I am glad to know that when I grow up I can be the best I can be, because others already have done it!
We are celebrating a very special day – its called Moebius Syndrome Awareness Day, and it is on January 24, 2012. People all over the world are planning to CELEBRATE! We want to celebrate – because we have found strength in finding people who also have Moebius syndrome in places all over the world! We want to CELEBRATE because we have learned to live with a very challenging condition! We want to CELEBRATE because we know that it is OK to be different and still feel really good about ourselves and what a positive difference we make in our world!
Maybe we can CELEBRATE in our class! We can learn to talk about the many ways in which people in our class look different, talk different, go to different places for worship, even vote for different people … and learn how to respect those differences. People with Moebius syndrome FROM ALL OVER THE WORLD have shared their ideas and pictures and stories – and you can find them all at www.manyfacesofmoebius.com.
I am not the only child in the world with Moebius. There aren’t millions of us, but there are a growing number of people we have found who live all over the world! We have many organizations around the world that have conferences, and many people find and connect with each other online.
I’d love to tell you that I am this perfect child (except for the Moebius part) but my family will tell you right away that I fool around just like anybody else! I guess I’m really pretty normal!
Thanks for reading this and learning something very important about me. I think you’ll soon find out there’s a lot more to me than just Moebius syndrome!”
(This letter was originally written by Sandy Goodwick, a teacher who also has Moebius syndrome. She wrote it when she learned – during the 1990’s – that kids with Moebius syndrome were still being teased much like she was as a child. It has been used and adapted by parents and children in many different places.)