Do you have a non-verbal relative or friend? If so, then you likely realize the power and importance of communication. We are so incredibly grateful when our loved ones are able to communicate their basic needs and wants. As a sibling of someone who was non-verbal, all I wanted was to hear my sister talk. I wanted to know what she was thinking, her feelings, what she saw, and in our family, what sarcastic comment she likely had to offer.
For many years, I believed that I needed to be my sister’s voice. Kristi had no effective way to communicate (besides a “Big Mac” button to ask for more, and a 7-level communicator which used a male voice). I recall the first time Kristi used a Tobii… it was only for a few minutes during a Natural History study appointment, but my heart was so full. That brief interaction renewed my desire for Kristi to communicate (effectively) on her own.
In 2015, I attended a Rett U Live seminar and watched videos of Susan Norwell working with girls just like my sister, albeit a bit younger. This further inspired me to want to hear what Kristi had to say. When Susan related, “I have older girls who are learning the Tobii”, I was fully committed. As a special education teacher, I worked very hard to make sure my students had ways to communicate, but all of my students had functional use of their hands. The Tobii eye-gaze technology was new to me, and opened a world of new possibilities and hope for Kristi.
For three months we utilized a trial Tobii, and I observed a side of my sister never before seen. I always knew she was smart (and sassy), but now I had proof. We could even Facetime with our other sister, with Kristi as an active participant and even “telling us off” a few times. But perhaps most rewarding for anyone with a non-verbal loved one, I got to hear those magical words, “I love you”. It was, without comparison, the best day of my life.
As our friend Duncan Millar so elegantly explained, there are times when we must help our loved ones express themselves, but our goal is always to amplify their voice. For any complex-needs individual, we should always strive to provide a robust communication environment wherein they can express everything they have to say. What does that mean for us?
- We need to model and communicate using their language.
- We need to provide opportunities to express their opinions.
- We need to ensure that all who interact (the team) understand the methods to communicate, and allow the time to communicate.
- We need to ensure access to a language system that offers a robust communication platform (not just a Big Mac button).
- And finally, we need to teach them to read, and to write.
Communication is vital, and I am so grateful that I had the chance to communicate with my sister… even the day she told me off. In this season of gratitude, we are so thankful for the technology that enables eye-gaze devices, and also for dedicated families, education teams and other supporters who “presume competence” and seek to amplify the voices of complex-needs individuals. Happy Thanksgiving to all of our amazing Rett U families.
