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Understanding Moebius Syndrome Through a Child's Letter to Their Teacher
- tim2658
- Aug 2
- 8 min read
In today's world, fostering understanding and compassion in education is more important than ever. This is beautifully illustrated by a heartfelt letter from Sandy Goodwick, a teacher who has lived with Moebius syndrome. Through the innocent perspective of a child, Sandy shares insights about what it means to live with this condition, helping to bridge the gap between awareness and acceptance. This blog post will delve into the themes expressed in her letter, aiming to educate not just teachers, but students, parents, and the wider community about Moebius syndrome.
Who is Sandy Goodwick?
Sandy Goodwick was a schoolteacher who spent much of her life fighting for people with disabilities.
It is with great sadness that I announce the passing of Sandy Goodwick. She died from a heart attack last Friday. Sandy has been an active member of our Moebius syndrome community for over 40 years. She was very active in the early years before the MSF and the MFOMS. Although her name is not well known she helped shape the community and the organizations working in it. Goodbye and thank you Sandy. We will miss you! - Tim Smith
Letter to the Teacher
by Sandy Goodwick
Dear Teacher:
About Moebius Syndrome: I am giving you this because I want you to understand more about me. You will 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, 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 other 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 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 must 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 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 have a very special day when we celebrate who we are – it’s called Moebius Syndrome Awareness Day, and it is on January 24th. 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 in an incredibly challenging condition! We want to CELEBRATE because we know that it is OK to be different and still feel 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 FROM ALL OVER THE WORLD have shared their ideas and pictures and stories – and you can find them all on the Many Faces of Moebius Syndrome website. M,F,O,M,S,.ORG
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 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!”
What is Moebius Syndrome?
Moebius syndrome is a rare neurological condition that primarily impacts the muscles responsible for facial expressions and eye movements. It occurs due to the underdevelopment of the sixth and seventh cranial nerves. This condition can lead to a range of challenges, including difficulties in smiling, frowning, and making eye contact.
While symptoms can vary greatly, some individuals may face additional complications, such as trouble with breathing or feeding. Studies indicate that Moebius syndrome affects about 1 in every 50,000 births, making it a rare but significant condition to understand. Early diagnosis is crucial, typically occurring at birth or shortly after, as it paves the way for targeted support and interventions.
Understanding these challenges is critical for educators and peers alike. It cultivates a supportive environment where children with Moebius syndrome can thrive alongside their peers.
A Child's Perspective
Sandy captures a unique viewpoint in her letter, providing insight into life with Moebius syndrome. The child's voice is both honest and hopeful, demonstrating that feeling different does not equate to feeling hopeless.
The letter begins with “Dear Teacher,” creating a personal and immediate connection. The child expresses how, at times, they may not be able to smile as others do or maintain eye contact. This doesn’t mean they are unfriendly or unkind—it's simply a part of who they are. For example, the child might explain, “Sometimes, I may look serious, but I’m really happy inside.”
This narrative is a powerful reminder of the importance of communication in the classroom. Teachers have a vital role in nurturing an inclusive atmosphere, where every student feels valued. Sandy’s letter highlights how understanding can foster acceptance and what a difference it makes for students with unique needs.
The Importance of Empathy
Empathy is at the heart of education, promoting kindness and respect among all students. Unfortunately, many children with Moebius syndrome face bullying or feel excluded due to misunderstandings about their condition. Sandy’s letter brings this struggle to light, conveying the hurt that comes from feeling 'different.'
As educators and peers become informed about Moebius syndrome, they can encourage a more empathetic classroom environment. Sandy specifically asks her teacher to explain her condition to classmates, aiming to clear up any misconceptions. For instance, she suggests simple classroom activities where students learn about each other's unique qualities, fostering understanding and respect.
Discussions that normalize differences can significantly reduce stigma and enhance the overall social climate of the classroom.
Fostering Inclusivity in the Classroom
Sandy’s letter serves not just as a story, but as a blueprint for educators looking to better support children with Moebius syndrome. Alongside empathy, fostering inclusivity should be a cornerstone of teaching practices. Simple actions, such as actively inviting a child to join group activities or creating collaborative projects that celebrate individual differences, can profoundly impact a child's experience.
When teachers adopt inclusive practices, they nurture a classroom culture that allows every student to feel safe and appreciated. Sandy’s message encourages peers to look beyond appearances and recognize the abilities of each student, regardless of their challenges. For example, a project that emphasizes teamwork can help students see the shared strengths in their group.
Ways to Educate Peers
Sandy’s message stresses the importance of educating classmates about Moebius syndrome. Providing materials like fact sheets, illustrated booklets, or even engaging presentations can deepen students' understanding of the condition. It has been shown that when children encounter differences in a supportive context, they are more likely to approach their classmates with curiosity rather than fear.
Her letter exemplifies how schools can use the personal experiences of students with disabilities to enlighten their peers. Incorporating personal stories can dispel myths about Moebius syndrome and foster a sense of community.
The Power of Communication
Sandy’s letter emphasizes the critical role of communication—not just between teachers and students, but among students themselves. Open discussions about challenges and acceptance can create a stronger bond within the classroom.
When children learn to express their feelings and thoughts openly, it paves the way for collaboration and friendship. Sandy’s text exemplifies this spirit by inviting questions from her classmates, promoting transparency, and emphasizing the need for supportive relationships within the classroom.
A Call to Action for Educators and Peers
Sandy Goodwick's letter is a call to action for understanding and compassion in education. By discussing Moebius syndrome from a child's viewpoint, it challenges us to reflect on how we can craft welcoming and inclusive environments for all students.
Incorporating communication, empathy, and education into classrooms will help foster a culture where every child feels valued and included. The stories we share, like Sandy's, teach us that differences can be spaces for growth and connection, ultimately enriching the educational experience for everyone involved.
In a world that often values sameness, we must shine a light on the unique beauty found in our diversity. Embracing Sandy’s message can act as a catalyst for change, leading to a more inclusive future where every child is celebrated.
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