Tuesday, 24 April 2012
You may wish to watch this “15 minutes” video first – that way I won’t ’spoil’ the book for you.
Did you watch it to the end? If you did take a deep breath and try not to rant about the bit about autistic people having no emotions. Pity Cathleen wasn’t able to edit that bit out, but I imagine that ‘personal control’ and the ‘media’ are contradictions in terms.
It is an astounding achievement for a first time writer to produce a readable and engaging account of extraordinary lives.
Cathleen is a woman of faith and determination – would that we all had such fortitude. Parents of special needs children will relate to her journey and the struggles they endure, all the more so when Cathleen copes as a single parent.
I read about and understood some of her frustrations, as I cheered her on in the wings, as she dragged herself up the learning curve into a whole new world, one that’s always been there, but not many of us noticed, until we found ourselves in the same place, quite by chance.
I had selfish reasons for reading this book after I watched the video. I’m sure we all admire the talents of savants but I wanted to understand the disconnect between extraordinary abilities and profound disabilities, some insight or clue. Cathleen describes Rex’s trials with the everyday minutiae of life – shoe laces, buttons, snaps – and yet his fingers are alive on the keyboard. My very ordinary children have similar difficulties, but now they’re older, their fingers can manipulate a computer keyboard or any other electronic gaming device, slot together tiny pieces of Lego with determination and creativity. Not the same thing, but sufficiently similar to drive a parent bonkers.
The turning point for me, was towards the end of the book. Rex was struggling at school and unable to learn braille due to his extreme tactile defensiveness. After a particularly difficult encounter with the school, she called an emergency IEP meeting to address her concerns. The tension during that meeting flew off the page, the emotion palpable, but she held it together and advocated for her son in a calm, logical and persuasive manner.
Whatever the future holds for Rex and Cathleen, I’m sure it is far brighter than she ever imagined.
And a quick note to the publisher:-
For those of us who are lucky enough to be able to see and have the ability to read, I thought I’d mention a little detail:-
Maybe you didn’t notice, but those little blocks of italics, with an important quote from the main script are very distracting – the eye hones in on it not matter how hard we try not to.
Also, as the text flows around the little boxes, it makes the pages turn into letters – in this instance ‘S’ and ‘C’ – just in case you hadn’t noticed.
Each book should come with a couple of free thumb covers.
Hope you don’t mind me mentioning it.