Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.
So, Wes and I have been in the Rett Syndrome business for three years now. In that time, we have talked about Abby and her battle with RS a lot, but usually it is with people who work with Abby or our family and friends. We haven't done any news articles or talked about the strollathon on our local news. Ive thought about it, but haven't been quite comfortable enough to do it yet. This week, though, we took a step out of our comfort zone to raise awareness, and hopefully funds, for Rett Syndrome.
Wes's employer participates in a giving campaign that encourages it's employees to make charitable contributions taken out of their paycheck to the United Way. During the past year, he has worked to enable employees to make their donation to IRSF, through their United Way donations. Last week, they held a meeting which, in part, discussed their contributions. It was the perfect opportunity to educate the other members of his department about RS, and what an impact their contribution could make. He invited Jenni Grammer from IRSF to talk about the foundation and what their mission is. She showed a terrific video, talked about what RS and what a difference they could make by making a financial contribution. Jenni is a great speaker and advocate for our girls. It was awesome seeing her again! I introduced everyone to Abby and talked a little about her and her journey with RS. I kept her introduction pretty short because the last thing I wanted to do was get teary eyed. It worked well. I asked if anyone had any questions....and they did, which was great. They asked lots of questions that gave us the opportunity to share all kinds of aspects of Abby's life that I wouldn't have thought to mention. I'm so proud of Wes for getting the whole process started. He was a little anxious about sharing this part of our family with everyone that he works with, but he is now glad that he did. They were extremely supportive.
Abby getting a hug from Jenni before she heads back to Cincinnati
It was a small step, but I talked about Abby and Rett Syndrome to a group of people, some who I don't even know, without getting too flustered or crying at all. I can think of things that I wish I had said, but I guess that will always be the case. After all, Abby's journey is not one that can be summed up easily in an hour. The response was very positive, which gives my confidence to do it again.
First of all, let me explain why we need to have a trial for an eye gaze device. As you all know, Abby doesn't talk and doesn't have functional use of her hands. Yeah, Rett Syndrome, thanks for that. This combination makes communication extremely complicated. Her most reliable means of communication is her body language and her eyes. With her eye gaze, she responds to yes/no questions and makes choices. This very simple communication system doesn't allow her many options to express herself. This is where an eye gaze device comes in to play. These devices are meant for people just like Abby. It allows a person to use their eye gaze to activate a device that generates speech. With the device, Abby can use her eye gaze (or dwell) on a symbol that represents a phrase or word, and it will say that phrase, or lead to another page of words to say. It can be as simple or as complex as the user needs. Pretty cool.
While we know that Abby can use this type of device, a trial is necessary for insurance. Her speech therapist will submit documentation that Abby is able to successfully complete a trial. We want to trial the ECO2 and the Tobii Ceye because we want to see which one is easier for her to access and which language system is the best fit. One device may work better with her glasses, her head movements, her strabismus, and such. Also, the language system in one device may be preferable to the other. The Adapting Creatively blog describes the trial process very well.
So now we have our first trial, the ECO2. Wow. It's just amazing. I played with it for a day before getting Abby in front of it to personalize some of the pages and get it ready for her. I found it fairly easy to create and modify pages. There is a lot of personalizing that can be done, which is great. The first task with Abby was to calibrate it to her eyes. At first, I used the dot that she was supposed to follow with her eyes. We found she was more successful when she tracked a zebra picture. Her glasses and strabismus don't seem to be a problem, which is a relief. After calibrating it, I gave her some time to "target practice". She needs to figure out how long to dwell on an object before it is selected. There are a few different ways to practice, but the train demo seemed to suit her. It is a simple enough activity that kept her interested.
There are a few different communication sets that we are using for the trial. There is a exploration wizard with a 15 key area that is working well. The symbols/icons on this device are foreign to Abby, so an area with only 15 keys is low stress and will give her a decent amount of things to say. Each of the keys leads to different pages with more choices. I have also been giving her time working on a user area with up to 45 keys. This would be the user area she would use if we decide to go with the Eco2, so I want to see how she is able to work with that user area also. It is set up different than most other devices, so I want to see how she can navigate it. I am just giving her time to explore, and responding to anything she says. Its important to make it is as no-stress as possible. So far, I'm noticing that she is able to make choices in the center of the screen easier. I sort of expected that. She will go to the outer keys, though, just not as often. I have also noticed that she navigates to a few of the pages more often. She has been going to the phrase based page about herself repeatedly. She says "my birthday is April 13th", "my name is Abby", and "I am five years old" over and over. That seems pretty typical for a kid playing with language for the first time.
I am resisting the urge to ask her questions that would result in a right or wrong answer. The teacher in me wants to get some sort of assessment of her progress, but I 'm realizing that Abby doesn't quite fit into that model. Thanks Colleen for reminding me that the device is for Abby to communicate whatever she wants, not just for me to assess what she understands.
I am SO anxious for her to really be able to use a device to start expressing herself, but that's going to take a while. Learning the meaning of the symbols and the navigation through the pages is going to take a long time, but it will be so worth it. She already is enjoying being able to choose what she wants to say, even if she hasn't completely figured it out yet. It's just amazing....and we're just in our first week. We have it until August 18th, so I'll be posting updates.
I have lots of videos that I have on my phone that I will post. I'm having trouble getting them on my computer, though. It is telling me that they are corrupt?? Wes will figure it out and I'll post them later.
