Today I went in to Brooklyn’s fifth grade class to do a brief presentation on Rett Syndrome and how to communicate with Brooklyn. I try to do this each year at the beginning of the year so that her classmates and new teacher have a better understanding of Brooklyn. This year there were only three students that had never been in class with her! I upate my presentation a bit each year as she gets older to try to make it more “age appropriate.” This year I changed it up quite a bit.
Here is the link to my blog post with my previous presentation: http://specialmommyx2.com/2014/08/17/communicating-with-my-girl/
This year I began by introducing myself and asking the kids to help me out real quick. I asked them to take their left had and put it over their mouth, take their right hand and sit on it, and take their feet and wrap them around the legs of their chair. “This is what Rett does to Brooklyn’s body. She WANTS to communicate but she can’t talk, use her hands or her legs.”
I then took out a Taylor Swift CD and a Wiggles CD.
I called on her friend Kendall – “On the way home from school do you want to listen to Taylor Swift OR the Wiggles?” (her eyes got BIG but she just sat there) After all – HOW do you communicate when you can’t use your hands, mouth, or feet to walk up to the front of the room to tell me?
“I guess since you aren’t telling me, you do not care…..WIGGLES IT IS! WOOHOO the WHOLE. WAY. HOME.”
Then I asked her friend Bailey if she has any pets – again – blank stare, a little wiggling but nothing…
“ummmm weird, SHE must not know if she has any pets, hmmmmm – in the FIFTH grade and she DOESN’T KNOW if she has any pets – (whispering to the class – she must be dumb.) I mean come on, even a two year old knows if they have a pet!”
Then I take out a bag of carrots and a bag of Pixie Sticks and ask her friend Marina – “OK it is OUR day to take in treats for the class – I will let you choose – do you think your class would like carrots or pixie sticks?” (this ALMOST back fired because Marina LOVES carrots lol) but again – she can’t talk, use her hands or walk to communicate her choice – I say – I guess you don’t care what your friends like – CARROTS FOR EVERYONE!!! Because mom ALWAYS chooses the HEALTHY SNACKS” (moans coming from the class lol)
I then told the kiddos they can uncover their mouths – they can now talk and use their hands and feet again.
I went back to each of the students and pointed out how frustrating it was for them to not get to choose their favorite CD to listen too, to be accused of being dumb, or not caring what their friends like all because I did not take the time to HELP THEM TELL ME. I went on to show them how they could tell me with their eyes and that is how Brooklyn communicates and that if you take the time to get to know her you will find out it is pretty easy to know what she wants/needs MOST days.
I talked about how on the inside she is just like them – there are things she likes, hates, things that annoy her, things that make her laugh, things that make her sad. There are things that she loves to do and things she doesn’t – just like them. We talked about some of those things :)
I talked about how basically – (ok – VERY basic for Rett) in her brain she WANTS to say and do the things they do but her brain mixes up the signals to her body and they just do not happen. I said – for instance (picking up a box of crayons sitting on the desk in front of me) “I want to color my “about me” poster – so I pick up this box, open it and grab the color I want. Brooklyn wants to color her “about me” poster too – but even though her body WANTS to pick up the box and her mind KNOWS what color she wants – she can’t because those messages aren’t making it from her brain to her hands….SUPER FRUSTRATING don’t ya think?” (entire class – YES…OH MAN…etc)
I also took time and introduced her 1:1 aides and let them know that they are AWESOME and are there to help them communicate with Brooklyn if they have trouble.
I then opened the floor up to questions from the kiddos and also a purple card and a letter will go home(see photo below) in their folders for them to read with their parents. I encouraged them to call us to hang out outside of school anytime! Also – Mrs. Klink-Fee has one of her “class jobs” as chauffeur :) Throughout the year her peers will be the one pushing her wheelchair around during the school day. It will give each classmate a chance for some 1:1 time with her.