The young woman was sitting in a wheelchair in the neurology waiting room today when we returned there after R had been weighed (she’s losing weight now; one more thing to worry about). The young woman started to grind her teeth and her mother moved away from the seating area to the corridor where R was plotting her escape. Her mother apologised for the teeth grinding. I genuinely hadn’t noticed. She started to chat. Her daughter was 40 (she looked 20 years younger) and was “severely mentally handicapped”. It was their first visit to the hospital for many years. Apparently nothing very much had changed. The mother told me that her little grandson had just been diagnosed with epilepsy and because her daughter had epilepsy too, she was now to have genetic tests to establish whether they shared a diagnosis. The daughter had never been given a diagnosis and now finally it looked as though she might be. She watched R wander about, always trying to make another bid for freedom. Her daughter had been the same when she was small, she said. Kept her on her toes.
The daughter was sitting quietly in her wheelchair – save for the teeth grinding – wringing her hands. I asked her if she was feeling nervous, if she ground her teeth when she was anxious. I told her that R did that and that she was always nervous when she visited the neurologist. She turned and looked straight at me with clear eyes.
Of course, I’m not a neurologist, and maybe this woman doesn’t have Rett Syndrome but our encounter today gave me pause. We’ve never been in any doubt that R is cognitively far better than she presents, despite being assured by specialists from health and education that she was profoundly cognitively impaired. There now seems to be an increasing consensus that professionals should, at the very least, retain an open mind about the abilities of women and girls with Rett. But what if we had listened? What if we had been persuaded that R understood very little?
We were lucky enough to be able to visit Great Ormond Street Hospital for a consultation with the excellent Dr C a few years ago. This was a specialist Rett clinic and we waited with another couple whose little daughter had just been diagnosed. The waiting area was a narrow corridor. Two women arrived wheeling in a young women with Rett Syndrome. The two new women found themselves a seat, turned the wheelchair to face the wall, out of the way, and proceeded to completely ignore the woman that they had brought. Its easy to be judgemental about this but just think: if you have been told that it makes no difference to someone whether or not you interact with them, that that person understands nothing of what is going on in the world around them, perhaps you might park the wheelchair facing the wall too. The thought brings me out in goosebumps.
We enjoy a bedtime story in our house. We tend not to over-think our choices. Usually we pick the next unread book in the pile. Right now, we are reading Bugsy Malone. The book was a gift from my mum, no doubt with a nod to my performance in the stage show when I was a teenager. (It was one line only as I recall – the smallest named part in the script. The show wasn’t as bad as you might think, thanks largely to the star quality of the pudgy kid who played Fat Sam, now a chisel jawed actor). I very briefly toyed with a career in the theatre but a pitch to my parents by my drama teacher was quickly dismissed and so the closest I get to a performance is the nightly bedtime story. I make the very most of my moment but I have a very limited range of accents, with most characters sounding a bit “Wallace and Gromit”. Bugsy Malone is a bit of a stretch.
Mostly R enjoys the stories that we read. She particularly likes funny books – we all loved David Walliams’ “The boy in the dress” – but she and I both enjoy Michael Murpurgo books too. The problem for me though is that I have yet to get to the end of one of Michael Murpurgo’s stories without crying at least once. I have read “I believe in Unicorns” at least half a dozen times and been a snivelling mess on every occasion. (Its very difficult to remain in character in this state.) I read Murpurgo’s “Cool” to R a while back. Both F and EB had loved the book. The story is about a boy who is knocked down by a car and finds himself in hospital in a coma (its not actually his saddest book). I thought, wrongly, that she might be interested in a story told from the point of view of a child without a voice. But it upset R and we didn’t finish the book.
Still though, F and EB’s response to this story and to Jacqueline Wilson’s “Sleepovers” (the main character has a profoundly disabled sister) encouraged me to look for other children’s books that might reflect their experience. I found one recommended on a website: “Out of my Mind” by Sharon M Draper. The reviews on Amazon and everywhere else were 5 star (lots of hyperbole about it being a “must read” book). There are lesson plans on the internet. The “award-winning” author had apparently been inspired by the non-verbal child of a friend. I don’t know why I decided to read the story before giving it to the children. I never normally do. But the decision was serendipitous. The central character has a condition that has left her unable to walk or talk but with a photographic memory. Her intelligence goes unnoticed until she gets a new communication device. All good, so far. Against the odds, and a whole lot of prejudice, she makes the school quiz team and is the reason that the team make it through the regional heats and into the national finals. And then, the team sneaks off to the competition and leaves her behind because they are embarrassed to have a disabled child in the team. They don’t win. Book ends. That’s it. THAT’S IT. No consequences. Nothing.
I might be still a little raw, still a bit sensitive but this book also made me cry, only this time they were angry tears. This is a book aimed at children. The adults in the story were appalling; the children in the story were appalling and no-one comes out with any credit at all. Many of the reviews were stressing how important this book is. It’s not. Its a horrible book. And no child of mine is ever going to read it, least of all R.
R’s grandparents arrived today from Germany. My usually high levels of stress always go through the roof when they come. The problem is mine really, or rather it’s the result of the peculiar miscommunication that exists between us.
It’s not actually the language that is the barrier. I understand German really very well. I have said before that I am one of those British English speakers who prefers requests to be cushioned by the liberal use of phrases like “if it wouldn’t be too much trouble, could you perhaps …”. Criticism should, where possible, only ever be hinted at in the most oblique terms and never said openly and directly. My in-laws are the Yin to my Yang in this regard. When he first visited our house after we moved in, my father-in-law, having surveyed the property, turned to us and said “Well, really the only thing you can do with this house is take it down and build a new one”. Followed by “I’m allowed to give my opinion, am I not?”, presumably because both G and I looked so crestfallen. That’s not to say that my father-in-law is a cruel man. Far from it, he is very kind and generous. He is just a very direct man.
This afternoon I was setting up R’s Tobii eye gaze computer and gushing to my father-in-law about how well she is doing and how smart she is. I told my father-in-law (again) about her being able to write. He looked, not for the first time, skeptical and said “you know that it’s very hard for us to believe that”. My father-in-law, as usual, was telling me straight. I am disappointed but its not because I am afraid that he doesn’t care about R because I know that he does. What really troubles me is the suspicion that he is not alone in this belief. Perhaps its just that he is the only one to tell me what he really thinks.