First off I want to give a huge thank you to Ingrid who helped me with this great presentation FOUR years ago! Over the years I have had people ask me to share it with them and realized I have never written a blog about it! I thought I might share it with you here – it is a great way to help explain what communicating with Rett Syndrome is like! (especially for kids) AND back to schol time is the perfect time to utilize this presentation.
To start the presentation I recorded a “Hello my name is Brooklyn and my mom and I are here to talk to you about Rett Syndrome.” Now, this part would not apply if your daughter never uses a switch. BUT your could of course use her Tobii if she has one! We have never done the presentation with her Tobii yet – maybe next year!
I printed out 6 blocks of colors and taped them to Brooklyn’s Eye Gaze Board and then a piece of paper with the following body parts (mouth, hands, feet, eyes)
I showed the kids the colors and asked a few one by one to come up and tell me what their favorite color is — then I showed them how they used all those body tools to choose their favorite color and let me know — eyes to look at color, hand to point, mouth to tell me and foot to walk up to the front of the room…
Then I asked a few to come up and tell me without using their mouth (I crossed off the mouth on the paper) — then I showed how they still used their feet, hands and eyes —
I then took away hands— (they still of course used their feet to come up to the front pointed with their elbow or nose but one did STARE really hard with his eyes!)
Finally I took take away feet — they get stumped with this one and try to raise their hand — but no hands! Try to yell it out — but no mouth! So it ends up being the one to make some noise (moaning, grunting) and latching onto me with their eyes to get my attention that I choose to “tell ” me their favorite color….
I talked about how this is Brooklyn’s tool that she uses…. and talked about how they all got pretty ansy and noisy when tools were taken and they had less to work with — and that is why people with less tools (control over their body) sometimes move and sound funny — they are trying to use everything they can to communicate .
I then went around the room and asked them their name and if they have a pet, but again did not let them speak — I pointed out that even though they couldn’t physically tell me with their words, the answer still popped into their head and of course they know IF they have a pet and what its name is! :-) I explained how frustrating it was for Brooklyn at times – knowing what she wants to say to the other kids around and not being able too!
Over the years I have changed the presentation to make it more age appropriate using things like tv shows instead of colors:
After I do the presentation I open up the floor for a Q & A with the kids who asked GREAT questions: Does Rett Syndrome Hurt? How does she sleep? How does she eat? Does she have a pet? How do you “get” Rett Syndrome? Can I get Rett Syndrome? and lots more. It was FANTASTIC.
It is amazing how this simple act of SHOWING them how Brooklyn communicates opens the door to typical peer friendships/conversations – they see how she is like them on the inside – she thinks, feels, and likes things just they way they do but just needs to communicate it all in a different way. I love seeing her friends interact with her! Over the years they have gotten SO GREAT at talking with her – helping be her voice both at school and in social situations.
I hope that this presentation can help other kiddos too! If you have any questions email me: firstname.lastname@example.org.
*Other blog posts you might like on communication, friendship, and kids that just “get it”