Sunday, January 16, 2011


Good Day RettGirls!

After hearing tremendous stories from many of you about your eye gaze devices, journeys and hardships in getting them for your girls we decided to put together a page at as a resource to help you find out what is out there and how to get it! You can find this all on our new EYE GAZE PAGE!

[An "eye gaze" device is a type of computer screen that uses infared technology to "read" where the user's eyes are looking -- the user can then use their eyes to control the mouse pointer and access software that "speaks" the words the user looks at.]

Some of us here at RettGirl are on our own journeys to get devices for our girls. After seeing the complete and total control one of our own daughters had when testing a device, we knew this was something we had to put together for everyone. When you see a RettGirl answer questions immediately with her eyes then hear a voice give the answer it is amazing! There is such a sense of relief and a giant urge to dance around the room screaming, "I told you so!"

We all struggle with Speech and Language Therapists, caseworkers, insurance companies and schools over communication, apraxia and our girls' hidden abilities to communicate.

We hope to ease this fight for all of us. Very soon. Please read through what we have and use it to your advantage.

As always, if you have any ideas or success stories we would love to hear about it so we can share them with other families.

Included on our new EYE GAZE PAGE:

  • Links to four eye gaze systems
  • Two Medical Necessity Letter examples
  • NEW! Join our EYE GAZE GROUP HUB to share information with other Rett Syndrome families seeking or using an eye gaze device.

TIP! When speaking with insurance companies, use the term “SPEECH GENERATING DEVICE.”

Enjoy and Good Luck!

Terri V~For RettGirl


  1. You are providing a much needed place to share the good news of Rett Girls' abilities. Too much time is spent on the disability!!!

    Remember that even when using a device that reads their eye gaze, professionals need an attitude of assuming competence and resist the urge to TEST!!! Make sure there on things on the device THEY want to say. Ways to comment, joke, argue, have fun!

    Engage and communicate and they will show you why there has always been that light in their eyes.

  2. I want to really encourage all families to try an eye gaze device with their little ones. I have five 22 month to 3 year olds successfully using eye gaze devices. So young and so capable!!! They are better on the device than I am. There is an Easter Seals AT group near me that really get these girls and are getting great assessment data to justify purchase of devices. Ask around and find those people - they are out there.

    Susan Norwell