I have Moebius syndrome. Throughout my life, I’ve met many people who have been curious about how I look. Sometimes people are friendly and ask me questions about myself; other times they appear rude and act like they do not want to talk to me or be with me. Although this hurts a great deal, I find it is helpful to remember that it is their loss, not mine.

SCHOOL

In school, I was surprised by the number of questions that people had for me. Sometimes I wanted to answer their questions and other times I wished they would just leave me alone. At first, teachers and children had some difficulty understanding what I said or meant. They weren’t used to how I sound when I speak and had to work extra hard to understand me. I tried to be patient with them, and they soon learned to be patient with me.

I needed some special seating arrangements when I went to school. I needed to sit close to the blackboard, and I needed a special desk. Sometimes, I needed extra time to finish homework. All of these things helped me to become a better student. My parents helped a great deal by going to the school ahead of time and planning with the principal and teachers so that everything went as smoothly as possible.

One of my fondest memories of school is speech therapy. To this day, some 30 years later, I still look back on the lessons I learned during those visits to the speech pathologist as some of the most important of my life!

I always felt it was important for my teachers to get to know me. Even though I had Moebius syndrome, I believed I was an individual just like everyone else, and I wanted my teachers to get to know the “me” inside. In spite of my best efforts, sometimes a teacher would make up his or her mind about me before getting to know me well and would make wrong assumptions about what I could or couldn’t do and what I did or didn’t understand. Some teachers seemed to think I wasn’t intelligent enough to keep up. But I taught them how looks can be deceiving. I showed them that although I did some things differently, given a little extra time, I could get the job done!

FRIENDS

Making friends was hard at first. It seemed to take a long time for me to meet people because of the way I looked. Having Moebius syndrome has always been challenging because it is so rare – most people have never seen it. Some are curious, some are afraid, and some are unpleasant. It was sometimes hard for me and for them because we all lacked experience dealing with Moebius syndrome.

Even though Moebius syndrome made me look different, I learned I was a special person with much to offer. Event though there were times when other children teased and ran away from me, those who did not run away discovered I was a valuable friend with much to share.

PARENTS

It is no secret that parents play the most vital role in the development of their child. Parents of a child with special needs must put forth extra effort and time to be an advocate for the child in school and social situations and to promote self-esteem and development within the child. Like all parents, they have to make sacrifices to help their child achieve his or her goals. One of the greatest gifts that parents can give their child is the unyielding hope for a life filled with quality and promise. At times, parents may have that hope when their child does not. Their support and belief can carry the child through those darker moments.

I suggest that parents always be honest with their child with Moebius syndrome. If the child asks a question about the disorder, about what will happen during a hospital stay, or why a social situation became difficult for him or her, parents should tell the truth. My parents never hid anything from me, nor did they ever lie to me about Moebius syndrome. As a result, I always felt I know what was happening to me.

SOCIALIZING

When I was very young, children would sometimes ask embarrassing, yet innocent, questions. As I became older, I began to expect that people would become more sensitive with me. But I discovered that teenagers and adults also asked painful questions or made comments that made me feel uncomfortable.

Dating is difficult for many of us to deal with, and, like everyone else, I found I wasn’t always prepared for some of life’s awkward and difficult moments. Adolescence was an unstable period in my life because of the pressure and emphasis placed on looks and appearance. In time I learned even this could be overcome; I learned that having a sense of humor could help me soften the painful moments.

THE BOTTOM LINE

I feel that the true experts about Moebius syndrome are those of us who have Moebius syndrome. While it is true that doctors and other health care professionals can help a great deal, I have been the one living my life. And I’ve learned that even though Moebius syndrome does not go away, I could learn to live with it, get beyond it, and have a full and meaningful life.

 

Matthew S. Joffe, MA, Director, Education and Outreach and a Wellness Counselor in the Wellness Center at LaGuardia Community College/CUNY. He lives in New York City. Reprinted from ‘Moebius Syndrome,’ published 1998 by AboutFace and Cleft Palate Foundation, with permission.