Visiting Your Child’s General Education Classroom

Written by Jess Steventon
Video by Kelly Schoeller
Date August 1, 2016

Every year as school starts, it can be challenging for ANY child to start with a new teacher, in a new classroom, with a new group of peers, let alone a child with Rett syndrome. For kids who spend some (or all) of their time in the general education classroom, inclusion can be a great experience for everyone involved, but sometimes it can feel like a daunting job to share information about Rett syndrome.  Mom Jess Steventon shared how she explains Rett syndrome and all about her daughter to the general education class. 

Early on in Riley’s school career, I decided not to let ignorance be the reason that kids didn’t interact with her. So I decided to go to the school and talk to all of the kids in her class and explain Rett syndrome in terms that they can understand.

I begin by explaining that all of us are made up of genes, not jeans, and that those genes determine whether we are going to be short or tall, whether we have blonde hair or red, the color of our eyes, everything about us. Everybody has mutations in those genes, some are just more noticeable than others. We talk about teenage mutant ninja turtles to give a well-known example of these types of mutations. Obviously turtles cannot talk in real life nor do they stand on two feet.

We talk about how Riley bites herself and how she sometimes yells out of frustration. In order to help the kids understand what it is like to be in Riley’s shoes, I give the kids Rett syndrome for a minute – making them put their hands together and not allowing them to talk or respond in any fashion. I then ask them simple questions like what their names are or ask them to do simple task such as writing the numbers 1 – 10 on a piece of paper for me. When I tell them they are cured, they always take a big sigh of relief. We talk about how they understood me but couldn’t do what I asked and how frustrating it would be to live their entire lives like that.

I also talk about seizures with her class. I use one student as a neuron and I am the dendrite. The child stands on the other side of the room and I say, “red rover red rover, send the neuron on over.” The kid comes running across the synaptic gap and I catch him/her imitating natural brain communication. Then all of the kids go on the other side of the room. Again I say, “red rover red rover, send all of the neurons on over.” As they all come running at me, I show them how I can’t catch them all. That’s how seizures work, I explain. There is an over-abundance of communication and the brain just can’t process all of it. 

My favorite part of the talk, though, is when I open up the floor to let the kids ask me any questions that they have about Riley. I have been asked her favorite color, favorite animal, least favorite animal, if she wears diapers, how she eats, how does she take a bath, what is her bed like, what did her voice sound like when she used to talk, will she always have to live with me, and will she ever get better. There are many more questions but they are always very intuitive.

I share that Riley loves music, Thor, and books so that they have conversation pieces to talk about with her. I explain how her DynaVox works and tell them to try it.
We conclude by talking about how everyone is different from each other, whether we are disabled, wear glasses, weigh a little extra, or talk a little funny and that’s ok.

It’s ok to be different, but it is not ok to pick on someone for those differences. I explain that it is ok to ask questions, however it is not polite to stare. Everyone has feelings and would rather discuss those differences than be cast out because of them.

Every year I hear what a difference this conversation makes. The barrier is broken and kids are no longer afraid of the unknown because they now know. Their questions have been answered and they can understand that Riley is just like them with a few differences. The teachers understand this too.

Watch this! Mom Kelly Schoeller explains Rett syndrome to her daughter’s class.

In addition: Consider sending home a letter to parents about your child the first week of school to help general education peers and parents understand your child. Or, consider writing an All About Me book or PowerPoint presentation for your child’s teacher and classroom staff.  For examples of letters and All About Me books click here.