I am a parent. A parent to someone with Rett Syndrome. A child with Rett Syndrome who indisputably is in great general health, so far dodging many of the major symptoms and challenging her diagnosis every day, but a child with Rett Syndrome nonetheless.
She is visually very alert, very responsive to others and to her environment. She communicates well-using expression and actions. She also has an eye gaze device which she has been using daily for 18 months. She rocks it at school: she knows all her phonics, numbers, colors and shapes. She is learning to read and spell and construct sentences. She voices her many opinions using it. Via her Tobii she asks questions, makes comments, tells us her feelings. She is 6.
I am a parent. A parent to a child who is neurotypical. He runs and jumps, climbs and falls; he laughs and cries, he jokes and sulks. He NEVER stops talking. He asks his sister questions, always giving her a choice and seeing how she reacts. He doesn’t yet understand that she has Rett Syndrome. He is 3.
I am a wife. A wife who has stayed home from work to raise our children during their early years, ensuring that I don’t miss any of those precious milestones whatever they might be. A wife who has chased and continues to chase medical appointments, therapy appointments, preschool, and school meetings, advocating on behalf of our children whilst my husband works.
I am an AAC teacher. A teacher who feels extra pressure to use the eye gaze device all the time at home because that’s what we have to do, right? Give our child a voice …
I do not manage to sit with my child and her Tobii as often as I would like. It may be because we are out, or busy, or she doesn’t want to, or her brother is too distracting, or because I have jobs to get done. Or because I’m just too damn tired.
Eye gaze technology is wonderful. But it isn’t a complete solution to all communication obstacles. It is just a part of the whole. Presuming competence and defining and recognizing a good “yes” are really what’s most important. We use this approach most at home. Always communicating with both children in an age-appropriate way. Always giving an opportunity to answer yes or no. Always ensuring exposure to language and communication because this is how all children grow and learn. We give endless choices for activities/food/clothes/people, etc. Having a good solid understanding of how each other communicates is crucial. Being tuned into the nuances of expression, breathing and eye pointing; using the Tobii when you can. Not turning it into a chore or a pressure but rather treating it as an outlet, a microphone, an alternative way of expressing her thoughts and wishes. Always presuming competence and cognition and giving her adequate time to respond. Not assuming that a non-response should be taken as a lack of understanding. Rather perhaps that we haven’t got to the answer yet, keep trying mummy.
Today there was the annual neighborhood party. My daughter didn’t want to go. Using yes/no I established it was because she couldn’t join in in the way that she wanted and that the other kids don’t really talk to her. She refused to go. I tried persuasion, bribery and threats. She wouldn’t go. She walked in the opposite direction repeatedly. She walked to our house and angrily stared at the front door.
We went indoors and I sat her in front of her Tobii. She immediately said she wanted to talk to me about someone. About herself. Said she was feeling sad, frustrated, angry. Said she felt disorganised and that scared her. Then she navigated to tell me she was done, goodbye, see you later alligator.
Am I shattered by what she told me? Yes. As we keep plodding along the path Rett is dictating that we will follow there is moment after moment when my heart has been, is, and will be broken all over again.
Am I proud of her and relieved that she was able to let me know what the problem was? Absolutely. She had the tools to express herself, even if it wasn’t exactly what I wanted to hear. However bad the issue, it’s better to have known what it is than not to. Enabling a communication channel where she feels trusted, relaxed and safe to express herself is crucial as she has shown time and again. It isn’t all about the Tobii. It isn’t all about how we understand her body language. It’s a symbiosis between the two, each approach reinforcing and strengthening the other, for all of us.
I am a parent. I am doing my best. And that’s ok.
Abigail, I am sure you have expressed how so many “mums” feel. You make it real, for all of us! You reminded me there is a bigger picture here than just all of my well meaning goals and endeavors on behalf of the kiddos with Rett Syndrome. It is the relationship that you have with Ésme and your undoubting belief in her that makes you work and work to figure her out! Even when you are tired and that’s better than OK in my book!
Aw shucks. Thanks. We do it together I think..
Wonderful article I can relate to as a fellow Rett mum. Thank you. X