Resources for Families

A Guide to Understanding Moebius Syndrome

The National Organization For Rare Disorders

The Center For Parent Information & Resources

AboutFace Canada

Exceptional Parent Magazine Guide 2018 Navigating Special Needs Resources

Support.com:  Support For Parents of Children with Moebius Syndrome 

Wonder Moms Blog

Advocating at School

Global Genes Toolkit 

Sample School Introductory Letter!

Being a parent of an infant or older child is a much different experience than having a newborn. Hopefully the shock and the first emotions that you felt have given way and you have more of a routine in your life. It is also easier when your child can communicate through speech and tell you what they are feeling. Here is a terrific tool for you to use as your children enter school:

When Your Child Begins a New School Year

This is a letter by parents Debra and Scott Morton. They wrote the letter for the families of the children in their daughter’s first grade class as well as teachers and other school staff. Debra encourages other parents to write similar letters for their children’s classmates and their families. To download a copy in Microsoft Word, click here.

Hi!

We are so thankful for this opportunity to address you. Our son/daughter, (child’s name here), will be in (number) grade with your child, and we are hopeful that they will all have a great experience and build strong friendships that become the cornerstone of a positive academic career. All children have strengths and weaknesses, challenges and differences. Our son/daughter (child’s name here) has some physical differences that may be something your children notice and speak with you about. We hope that with this heads-up, we can reduce any awkwardness or discomfort for the kids.

(Child’s name here) has Moebius syndrome (pronounced “mo-bee-us”). It’s a very rare disorder that affects facial movement and some muscle function. The main feature of this condition is facial paralysis, due to missing nerves. (Child’s name here) cannot blink or squint, and cannot move her eyes left to right. She cannot frown, and because her top lip does not move, she cannot smile like you and I, or fully close her mouth. At times her speech can be difficult to understand also.

This is (child’s name), smiling her biggest smile… (attach a photo here) Moebius syndrome is not progressive, but new challenges arise with age and new social situations. (Child’s name here) does have some muscle weakness and may not keep up with the other kids easily on the playground or in gym class. She gets physical therapy in school to help with this. Other than these differences, (Child’s name here) is a typical (number)- year-old. She is outgoing and friendly, she wants to have friends, join in with her peers and learn new things each day.

In our experience, some children, and adults, may avoid her or stare at (child’s name here). We know they are just unsure, but it can be upsetting. If they ask her about her differences, she may be willing to answer questions. Other children may prefer to ask their parents about it, and we are asking for your support in reassuring them that she is not intellectually disabled, not unhappy, not “pulling a face,” and the syndrome is not “catching.” We are not asking for (child’s name here) to get special treatment, but hope that we can all encourage every child to be friendly, include others and be sensitive in the things we say.

If you have any questions, we will be happy to answer them. Even “Does she have feeling in her face if it’s paralyzed?” to which the answer is yes!  Please don’t hesitate to contact us. Our email address is (your email address).

Many thanks for taking the time to read this, and we hope all the children feel valued and important!

(Signed by parents)