Kelly shares her children's journey with Rett Syndrome and Down Syndrome on her blog http://specialmommyx2.com/ .
Kelly and her daughter Brooklyn
Written by Kelly Butler
March 24, 2010
Brooklyn and I went to Fremont Elementary School to speak to the 2nd and 3rd graders today. It was great for them to be introduced to Brooklyn AND Rett Syndrome. They are hosting a Dress Up 2 Cure day this Friday to raise money for Team Brooklyn. www.dressup2cure.org
Ingrid helped me with a great presentation - I thought I might share it with you - it is a great way to help explain what communicating with Rett Syndrome is like!
I recorded a "Hello my name is Brooklyn and my mommy and I are here to talk to you about Rett Syndrome" message on her talker to start out the presentation.
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 tell you -- eye to look at color, hand to point, mouth to tell and foot to walk up...
Then I asked a few to come up and tell me without using the 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 pointed with their elbow or nose but one STARED 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! So it ends up being the one to make some noise and latching onto me with their eyes....
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 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 did not let them speak -- I pointed out that even though they couldn't tell me, that the answer still popped into their head and they know! :-) 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!
We then had 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? and lots more. It was FANTASTIC.
It would be a great way to start off each year with your daughter's class I think too - to "explain" Rett Syndrome a bit to the kids that will be interacting with your daughter each day in class.
Here is Brooklyn's Eye Gaze board that I used along with the sheet with the body parts on it.