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Summer 2000 Table of Contents
Versión Español de este artículo (Spanish Version)

By Wayne Cuthbertson, 19 year-old law student at the University of Aberdeen, Scotland

Reprinted with permission from Exceptional Parent, July 1999

Editor's Note: This article is reprinted from the July 1999 issue of Exceptional Parent magazine which is available by subscription at the toll-free number 1(877)372-7368 or www.eparent.com. It originally appeared in the February 1999 issue of The Moebius Syndrome News. Information about Moebius Syndrome is available at (660) 834-3406 or www.ciaccess.com/moebius or read the article Moebius Syndrome- A Life Without Smiles

As a child, the fact that I have Moebius syndrome never troubled me at all. From a fairly young age, I have been aware of the fact that I am different. It never had a name; it was just there all the time. To me it was the things I could not do: I could not smile, move my lips, move my eyes from side to side or suck properly. I was just different from everybody else. There were always people who pointed at me, made jokes and comments, and tried to show up my deficiencies, but I let it all wash over me. I had lots of support, and I had a strong sense of self-worth and inner belief and confidence. I do not know when it happened, but suddenly when I started high school, among lots of new people and in a different place, the world seemed bigger and stranger, and infinitely more daunting. For the first time in my life, I was not just aware that I was different, I was acutely aware. Perhaps it is this increased level of consciousness that comes with adolescence that helped to shape me. Forget the warm hugs of your parents and the support of your friends. When you hit your teens, it is time to stand up and be counted as a person. Here is a little of what I have learned, and some advice I can give to anyone who has Moebius syndrome or any other disability.

  1. You need to get over being so aware of how different you are, that it makes you shy, or overly sensitive. Believe that you are a beautiful person; believe in yourself.
  2. Never forget that we are each our own individuals formed in a singular and unique way, and never let anyone say you are not special. There is no such thing as perfection. Perfection is an unattainable ideal which can be striven for but never achieved. If anyone tells you that you are not "normal" ask them what "normal" is. That often makes them think, but some people are remarkably cruel at this age. If they still persist, tell them: "I don't care what you think, none of us are `normal' we are all different and beautiful in our own ways." If they laugh at you, then have a laugh yourself as they are probably so immature, close-minded and wrapped up in their own prejudices that it isn't really worth caring about what they think.
  3. When you talk face-to-face with someone, maintain eye contact. It oozes self-confidence, and people will respect that. Also remember that it is not always how you say things, but what you say that counts. If you can come to terms with being different, then so can other people. Just believe in yourself.
  4. It all comes down to confidence. This is what getting through your teens is all about. You need to love the person you are. Stand up for yourself and never let anyone brush you off. Most of all, be assertive. Show people what you are like on the inside, and you will find that they will like you more than you think. Have confidence in your abilities, and let nothing stand in the way of what you want in life. Love and believe in yourself, and you will go a lot further than you think.
  5. Making friends can get much tougher as you mature. As you become aware of how different you are, don't be afraid to put yourself out there when you meet someone new. If you can't lift your head up and offer them a warm smile, let your inner warmth come out in other ways. Be honest and open - other people will always respect that. Be confident when meeting people. Getting involved in lots of group activities and sports, if you are able, will expose you to new people all the time and allow you to grow in stature as a person. Try something new!
  6. The other sex: Don't be afraid to talk to the other sex. If you have confidence in yourself then anyone will like you. But no one who cowers away in the corner ever has any success. If someone likes you, then they will like you as the person you are. If they don't like you because of the condition you have, then they are probably not worth knowing anyway! Try not to be too shy, although I know it can be very difficult. Now, kissing for someone who has Moebius syndrome is quite a proposition. I mean, if you can't move your lips, how can you kiss someone properly? The simple answer is you can't. However, you would be surprised at what can be achieved with a little effort. Kissing is possible just don't be too embarrassed to try. Use what abilities you do have the best way you can.
  7. The teen years can be a hard period. It was hard for me. Come to terms with it and with your place in the world. I have always found that it helps to be able to just have a quiet "thought" about things to yourself. Take a step backward, and upward, and have a look around; you will often see yourself and other people in a different light.
  8. Life is a constant learning process. There is no such thing as failure, only feedback.
  9. There were times during my teens when I thought I was the only person in the world like this, and I was just being punished. I often felt like, "Why do I bother when people only seem to try and knock me down?" Well, I have been there and have gone through it, and I am 10 times better for it. I am nowhere nearly as shy as I used to be. (Shyness isn't necessarily a bad thing. It is often a sign of sensitivity.)
  10. Enjoy your teens. While it can be one of the hardest times in your life, it can also be one of the happiest.

Much of this advice may apply all throughout your life. During your teens, however, you are more aware of your own idiosyncrasies, making this time even more difficult. Never forget those who love and support you, but that they can't be there forever. That is why we all need to build our futures through our own strengths and courage.

Parents may wonder how they can help their child to do this. It seems to me the greatest thing parents can give to their children who have Moebius syndrome, or any other disability, is love. My mother never treated me any differently than my brother and sister - she loved me just the same. Giving children the strength and confidence to love the people they are and believe in themselves will get them through the most difficult times. This will help them become more independent and able to tackle the world on their own. Parents are a solid foundation for children to build from. With a loving parent who encourages, supports, and believes in them, I see no reason why children who have Moebius syndrome, or any other disability, cannot achieve a great deal. I don't intend to let it hold me back.

Many will tell you that people who have Moebius syndrome can't smile, but I have never believed them. I can't physically smile, but I have been smiling all my life. I feel warm and happy and joyful inside - isn't that what smiling is all about? People who know you well will know when you are smiling. I have always believed that while I can't make my lips form the shape, everything else is there.