Back to School with Rett Syndrome: Resources for Understanding, Inclusion & Support
As students across Manitoba head back to school, a new school year brings new classrooms, new staff, new classmates... and often, another round of explaining Rett syndrome.
For families, that can sometimes feel overwhelming. Rett syndrome is complex, and it can be difficult to explain what it means for a student’s movement, communication, learning and everyday participation; especially when teachers, educational assistants or classmates may never have met someone with Rett syndrome before.
The Manitoba Rett Syndrome Association has resources available to help make those conversations a little easier. Helping Educators Understand Rett Syndrome A student with Rett syndrome communicates differently, moves differently and may require significant physical support, but those differences should never be mistaken for a lack of understanding, personality or potential.
Our pRETTy Awesome educational materials are designed to provide schools and families with accessible information about Rett syndrome and help create classrooms where students with Rett are better understood, included and supported.
Resources are available in both English and French and include:
● Fact Sheet for Educators English | French
● Fact Sheet for Parents English | French
● Rett Awareness Crossword English | French
● Rett Awareness Posters English Poster 1 | English Poster 2 French Poster 1 | French Poster 2
These educational materials were developed by Acadia Pharmaceuticals (Canada) Inc., with creative input from Canadian Rett syndrome organizations Manitoba Rett Syndrome Association, Saskatchewan Rett Syndrome Association, Rett Syndrome Society of Alberta, Rett Syndrome Society of British Columbia, and Association québécoise du syndrome de Rett.
Meet Ally: A Simple Way to Introduce Rett Syndrome to Students
Explaining Rett syndrome to children can be even more challenging. How do you explain that someone may understand what you are saying but cannot easily respond? Or that their body may not always do what they want it to do? A short animated video available through RettLife.ca can help.
The video introduces Ally, a remarkable girl who lives with Rett syndrome. Ally is curious, intelligent and has plenty to say, and she simply communicates and interacts with the world in her own way and sometimes needs extra help. Created as an easy-to-understand introduction to Rett syndrome, the video is intended for children from kindergarten through Grade 8, although it can be helpful for viewers of any age.
It can be shared with a classroom, school team, siblings, friends, recreational programs or anyone who would benefit from understanding a little more about Rett syndrome and how to positively interact with someone who lives with it.
Meet Ally and watch the Rett syndrome video here.
The educational video was developed by Acadia Pharmaceuticals (Canada) Inc. with creative input from Canadian Rett syndrome organizations Manitoba Rett Syndrome Association, Saskatchewan Rett Syndrome Association, Rett Syndrome Society of Alberta, Rett Syndrome Society of British Columbia, and Association québécoise du syndrome de Rett.
A Little Understanding Can Make a Big Difference
For a student living with Rett syndrome, inclusion often begins with understanding. Understanding that someone who does not speak can still have plenty to say. Understanding that slow or inconsistent physical responses do not necessarily reflect a lack of understanding.
Understanding that communication may happen through eye gaze, facial expressions, AAC technology or other methods. And understanding that a student with Rett syndrome is, first and foremost, a student: with interests, friendships, opinions, humour, strengths and the same need to learn, participate and belong as everyone else.
As the new school year begins, we encourage Rett families to share these resources with teachers, educational assistants, school administrators and classmates. We also encourage educators to use them to start conversations about Rett syndrome, communication, inclusion and the many different ways people participate in the world around them.
MRSA Is Here to Help! All Year Long!
While October is Rett Syndrome Awareness Month, Rett syndrome education and awareness should not be limited to one month of the year.
The Manitoba Rett Syndrome Association is available throughout the school year to support schools, school divisions and staff who would like to learn more about Rett syndrome.
If your school has a student living with Rett syndrome, or your staff would simply benefit from learning more, please reach out to us. MRSA can come to your school or division, provide a presentation, speak with educators, educational assistants, administrators and other staff, answer questions and help build a better understanding of Rett syndrome and how to support students who live with it.
Sometimes the opportunity to speak directly with someone who understands Rett syndrome can help staff feel more informed, comfortable and confident. You do not have to wait until October. We are happy to help whenever the need arises.