My name is Allie, and my sister is Emma. I am 18, and Emma is 22. Emma is nonverbal, but that does not stop us from doing all the things that sisters do; we still bond, and occasionally we fight, just like typical sisters! One day we may sit on each other and argue, but then the next day we are plotting against our parents. Being Emma’s sister has been exciting, challenging, and everything in between, but she has taught me so many things (responsibility, compassion, and the joy of helping others), and I feel blessed to have learned so much from her. In fact, our journey together has inspired me to major in Elementary/Special Education.
Like typical sisters, Emma and I have experienced many things together, including events like runDisney and various Rett Syndrome benefits. Emma has always loved Rett Syndrome events where she is able to meet new people, interact with her family and friends, and listen to the band! Although Emma cannot communicate verbally, we have found many alternative ways to communicate. I recognize and understand “the looks” I get. There is the “get away from me” face (which I get quite often, considering we are sisters), and the “I am about to laugh so loud” face when she is ready to just have some fun. These are the same looks that all sisters have… the looks that only they know and share together.
Of course, we also have cards that say “yes” and “no” for simple and quick questions, but in my opinion, the coolest form of communication we have is Emma’s eye gaze system. Like many Rett girls, Emma utilizes an eye gaze computer to scan icons and “click” on them with her eyes. When clicking on the icon with her focused gaze, it is highlighted and “speaks” the letter, word, or phrase. It is an amazing technology and a blessing that we are able to communicate with her through a computer using her eyes.
Having eye gaze technology has been incredibly useful. It provides a reliable way to communicate so that Emma does not have to struggle to make her needs and opinions known. There is even a setting to modify her “voice” to sound similar to her natural voice… so Emma can now feel that she is being well represented. She shares her needs, her thoughts, and her emotions with us.
Having access to this type of device is extremely helpful for not only her but our family too. We can be confident to meet her needs, but also enjoy and interact with her through games and other “fun” conversations. While the quick and easy forms of communication (yes/no cards) give her options to choose from, it is so beneficial for all of us to have this more sophisticated form of communication. Not everything can be shared with just “a look” or a yes/no. The eye gaze system gives Emma broader opportunities to share everything she has to say!
My name is Allie, and my sister is Emma. We are 18 and 22 years. Emma is nonverbal but we still fight and bond as sisters do. We still sit on each other and argue but then the next day we are plotting against our parents. I feel lucky to have Emma as my sister. I have learned many things from her that has even brought me to my current college major in elementary and special education. Personally, I have learned about responsibility and helping others. Together, we have gotten to experience many opportunities like runDisney or many Rett Syndrome benefits. Emma always loves the Rett Syndrome Benefits, especially if she can meet lots of people and there is a band. Being Emma’s sister has been both exciting, and challenging, and everything in between.
Although Emma cannot communicate verbally, we have found many ways around that and learned our best forms of communication with her. After my 18 years with her, I recognize and can understand “the looks” I get. There is the “get away from me” face that I get quite often considering we are sisters, and the “I am about to start laughing so loud” face when she is ready to just have some fun. I feel like all sisters have those looks that they just know. We also have cards that say yes and no on them for the simple and quick questions. I have to say though that the coolest form of communication we have with her is Emma’s eye gaze system. Emma can use this eye gaze computer to look at icons and click on them while focusing on it. When clicking on the icon with her concentration, it can highlight around it and speak the letter, word, or phrase to us. It is amazing that we are able to communicate with her through a computer using her eye contact.
Having this eye gaze device has been so useful. Emma has an easy way to communicate with us so that she does not have to struggle. We have a setting to even make it sound similar to what her voice may sound like so that Emma can feel that she is being represented well. She can share her needs, her thoughts, and her emotions with us. Having access to this type of device is extremely helpful for not only her but our family too. We can assist her in any way she may need along with play games and have fun with her.
While it is nice to have the quick and easy forms of communication like the yes and no cards or giving her options to choose, it is so beneficial for all of us to have this larger form of communication. Not everything can be shared with just a look or a yes and no. This eye gaze system gives Emma broader opportunities to share everything she wants to tell us.
