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Symbol Communication in Rett Syndrome

Posted Dec 12 2011 12:00am
We have been brain storming and working on our Communication page for RettGirl to include many of the symbol choices you have in our non-verbal world while trying to find something that works for our daughter's both at home and at school.

So, Kelly Butler and I want to share what we are doing with our girls.

As you know, the same method will not work for every girl and we do believe in the Multi Modal Communication System for Rettgirls .

This, by no means is the answer to everything, we change things up as our daughters learn and as new things are introduced to them.

We thought it might be easiest to show you in pictures. I will start with what Kelly uses with her precious Brooklyn.

As you can see Brooklyn's main form of eye gaze communication is through a plexiglass Eye Gaze Board. I hold it up in front of her and can see through as she makes her choice.
This one is her choice of activities "I want to read, I want to play a game, etc." Depending on which choice she makes, that leads to other questions.
If she chooses watch TV, she then gets options of movies to watch like this. We generally give her four movies to choose from. We hold up the choices in front of her and she looks at her choice.
These are her needs choices - "I'm Hungry, I'm tired, I'm Hot, etc"
We got the alphabet letters that they use in first grade and made boards for that too
Of course she ALWAYS has her yes/no. We do hold them up on the same side. Yes is always on her right

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I use a few different things with Abby. After we were denied an eye gaze system I made it my mission to build her a system that works so she can effectively communicate in a way those around her can understand. We started with themed communication boards. (Boardmaker Symbols) and had them laminated.
At meal or snack time we break out this one. She can choose each time she wants a bite or a drink and weather she want's more or is, "all done."
When reading a book we bring out this page. She cant tell us when to turn the page, how she feels and when she is done.
When watching TV we break out 3 boards like this with different shows on them. We also have a no on it so she doesn't have to choose from either page is she doesn't want to.
This is a multi purpose board for many things. More, all done, yes and no.
School Board (class choices.)

When on the road or doing several things we have a book we carry
We started with baseball card sleeves and fit the symbols to the sleeve size

We have a flexible 3 ring binder
Colored seperation tabs by category

I attempted to follow the color coding that the PODD system uses.

Each sheet and section is easy to find
The sheets come with 9 squares so there is separation between each choice if needed

TV page


TV Show choices

We follow the same pattern as the boards so the same pictures are always in the same place whether it be board or book.
As you can also see by her reading page in her book
Bed time routine

Family
Greetings
These are the laminated YES/No cards we keep everywhere. At school. In her diaper bag,book bag and every room of the house. Yes is always on the left for Abby and No on the right because that is how they choose at school.

It is very important to keep school and home the same in the symbols you use and the placement of the symbols.Also known as the LAMP system. Children who are non verbal motor plan better with consistent placement.

We hope we have given you some ideas especially if you are still in mid fight for eye gaze equipment or have found that mobile picture symbols work better for your girl.

Any of these we have shown here are also a great way to start communicating with your girl.

Please feel free to email us with any questions,comments or things that work for you at:vejrfam@yahoo.com

Good luck,
Terri and Kelly

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