My eight-year-old daughter, Ashley, began working with Susan Norwell three years ago. At the time, Ashley was rejecting her eye-gaze device, both at home and school, preferring instead to whine or cry to communicate her preferences. Susan’s occasional in-person consults over the ensuing two years were helpful as they gave us some tools and approaches to help drive more purposeful communication for our daughter. However, Susan’s visits were quick hits – intense interventions with immediate improvements that we struggled to maintain as a busy family with several young children. We relied on the next “Susan visit” to help us get back on track and continue to progress Ashley’s communication skills. Then, the pandemic hit, and we panicked over what this would mean for Ashley’s learning (as we did for all of our children).
Fortunately, Rett University had a great solution – Susan could remote into Ashley’s eye-gaze device to track and model communication as she simultaneously taught her on a zoom-like platform. And just like that, Susan was a regular in our living room. Through these routine remote sessions, Susan gained an appreciation for Ashley’s likes and dislikes, sensitivities, apprehensions, motivations, good days, and bad days. And the list goes on. In short, she made it a priority to learn Ashley, so Ashley could learn.
The learning didn’t stop there. Indeed, Susan patiently and gently taught our family and caretakers how to support Ashley in her learning. This – you see – was the place that I now understand needed the most attention. Understanding how to model on an eye-gaze device is akin to learning a foreign language. Ashley absorbed it quickly but her mother …. not so much. For me, it took repetition and the opportunity to watch a trained professional engage my child to feel more confident in doing so myself.
Remote sessions through Rett University also afforded Ashley the opportunity to push herself in the comfort of her own home where she was more at ease. Susan told her she could do hard things, pushed her to tackle them, and celebrated her when she did. The sessions follow the Balanced Literacy Model with blocks that include self-selected reading, guided reading, word study, and writing. Building the stamina and endurance to get through a Susan session took time. And, we’ve had some very hard days where Ashley frankly just didn’t want to play. Who could blame her? But, with Susan’s support, she has had 100x as many good days as bad days, and her overall disposition to learning has changed as a result.
So perhaps the best testament to the remote sessions from my perch is Ashley’s obvious sense of pride and achievement in her work, and her newfound belief in herself. The poet laureate Amanda Gorman eloquently said, “For there is always light if only we’re brave enough to see it. If only we’re brave enough to be it.” Remote sessions at Rett University have instilled that light in my daughter, and we have so much hope for her continued learning. What a gift!
This is an Awesome program! I’m just learning about Rett syndrome. We are beginning too foster parent our 11 year old cousin. She has not had the care she needs, but we are going too start now! She walks but doesn’t use her hands. We are looking into getting her a tobii but it’s a process, hoping too get a rental or something because she wants too communicate! I know she smart! Loving! And wants too feel accomplished! I have a special needs daughter also who has a diagnosis of Stxbp1. She has came a long way with lots of therapy. She has learned too use a accent 1000. Abbie ( our Rett girl) is so interested in my daughters device! I can’t wait too see what she can do once we start working together! Thank you!
We are so happy you are loving our program and please let us know if we can support Abbie’s communication journey in any way. Our girls and boys are definitely super smart and totally lovable. If you need support, please email me, kourtney@gp2c.Org.