Everything I've Never Said

Everything I’ve never said, Samantha Wheeler

This great tween book is about Ava, an 11 year old girl with Rett Syndrome, which means she cannot speak, move her head or feed herself, and has very limited muscle control. She adores her big sister Nic and her parents, but is also aware that they don’t really know her or what she is thinking because she can’t express herself.

School is a constant frustration because the teacher thinks Ava should be able to point to various communication cards, but Ava can’t get her body to do it right. When pushed really hard or overstimulated she screams uncontrollably or pinches, all the while longing to be able to express herself in ways people understand. When circumstances mean that another member of her family also can no longer communicate, people around Ava start searching harder for a solution to help her talk.

It is a heartfelt book, expressing what is must be like to be trapped with your own thoughts in a body that won’t do what you want it to. Author Samantha Wheeler has a daughter with Rett Syndrome so she is writing from personal experience and it shows. There are some wonderful characters who help with children with disabilities, and also people who clearly shouldn’t. She expresses the frustration of dealing with disability services (this book is based in Queensland) and trying to get the assessments needed to qualify for assistance.

In many ways there are very similar parallels to Out of My Mind but in an Australian context. Highly recommended reading for anyone age 9-10 right through to adults.