Meet Tilly
Last year Tilly was one of the first AAC users to try our new low-tech Super Core Communication Book. Tilly’s mum Dolores has answered some of our questions below about Tilly and how she is getting on with the Communication Book almost a year on. How does Tilly communicate? How did her journey with AAC begin? Rett UK then supported us with a loan device. We filmed Tilly using Super Core every week to document her progress and her speech therapist was blown away by her communication skills. At this point, Tilly met the criteria for an NHS referral and 6 months later she got her very own device which she still uses today. How is Tilly getting on with her Super Core Communication Book? The book works really well because we can do Partner Assisted Scanning, where we go through the relevant symbols and Tilly can give us her best yes (shaking her head from side to side) or no (turning her head away). Because the book uses the same vocabulary as her high-tech device, it helps us model all the time. The book is a better option at times when Tilly wants to play, allowing her to focus on an activity while you model and she responds. She gets excited to see it. What motivates Tilly? What’s next for Tilly? Right now she’s learning her letters and numbers, and playing meaningful games with her sister so she can continue to develop her understanding and feel involved and engaged. We played with a keyboard the other day. She loved it and told me she wanted more. Yesterday she told me that she wanted to do art, craft, draw, paint, stick and cut right now. That makes me so happy. The screaming fits of frustration have ended as her eye gaze skills have developed and her sense of being heard is evident in her face. We will continue to advocate for Tilly’s right to be heard and listened to, and we will help her with her engagement and confidence and learning, in her own way, in her own time, on her own terms. She is just walking a different path – an inspiring, meaningful, valuable path that has not only taught Tilly but has taught all of us the importance of communication, in whatever form that stems. None of this is easy. It is very very hard work, and quite overwhelming, but when she then says ‘I want a cuddle’ or ‘I want to eat or drink, right now’, her personality is evident and her demands are actually electronic music to my ears.
Tell us a bit about Tilly?
Tilly is almost 4 and she has Rett Syndrome, a rare genetic syndrome and cannot communicate verbally. Tilly loves people. She loves being in the thick of things with her sister Thea (5) and her friends at nursery. If there is any sort of activity, Tilly wants to be involved. She loves colouring and reading and going outside in her wheelchair. She also loves rolling around on the floor relaxing listening to Taylor Swift!
Tilly uses an eye gaze device with Grid 3, a low-tech Super Core Communication book, and communicates by interacting and vocalising.
We went to a Rett UK open day in 2018, 6 months after Tilly was diagnosed. At aged just 2, Tilly amazed us all when she tried eye gaze for the first time. She spent ages on cause and effect games and just loved it. It showed us that there was a lot going on in her mind that she wanted to tell the world.
Tilly uses her low-tech Super Core book whenever we go out anywhere (sometimes we just take some of the pages). We also use it when we’re playing games, baking, reading, painting or doing anything messy!
Taking an interest in her, communicating with her and engaging with the eye gaze together is so important because she feels you are taking the time and effort to learn her way of communicating. Modelling is so important. She feels listened to and heard and that is key to her motivation.
Tilly is thriving using AAC and we know there’s lots more out there to help her demonstrate her understanding. She’s just started using Look to Read and we’re looking into Rett University and more Smartbox software to help her on her learning and communication journey.