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.