Rett syndrome is a neurological disorder caused by a faulty gene that affects mainly girls. Our daughter Amy was diagnosed with it in June 2009, shortly before her second birthday. She also has congenital heart disease. This blog reflects my family's experience of Rett and my own reactions to it.

Tuesday, 3 June 2014

'The reason I jump'

We got back at the weekend from a week's holiday in the Scottish Borders, near to where my parents live. It's a remote and slightly overlooked area, less well-known than other parts of Scotland, far away from major roads, railway stations, airports, and other conveniences of life. It's beautiful, in a gentler sort of way than the Highlands. Whenever I go, I always feel as if time has stopped a bit.

We stayed in a converted stone farm building (all on one level, great for Amy's chair), deep in the Cheviot hills - down a track, through a ford, across two cattle-grids and over a tiny bridge with no sides. (We live in inner London: when we go to the countryside, we like to really go.) All we could hear, at any time of day, was the birds and the sheep and the stream and the distant church bells of Yetholm Kirk. It's the kind of place that makes you go 'Ahh, PEACE'. (After which: What, no internet access? No phone reception either? What...?)

I always think holidays like this will be a perfect reading opportunity. And sometimes they are. This time, though, it didn't really happen. My pile of books remained largely undisturbed, while I spent most of the time staring into space. (And trying to get Amy to pay attention to the rabbits, which played outside the window most mornings. She and I also made progress with 'The BFG', which she's keen on. The descriptions of giants eating children made her laugh.)

But I did read one marvellous book. Written in little bite-size chapters, it suited my concentration levels very well. 'The reason I jump' is a singular account of what it's like to live in a world where your body won't do the things you know it should, and you can't communicate the thoughts that are in your head. The singular thing about it is that it's written by a teenager, Naoki Higashida, who lives with severe autism, and all the experiences and feelings he describes are his own. (He 'writes' by means of an Alphabet Grid, a method of non-vocal communication.)

Amy doesn't have autism, but I was hugely struck by some of the observations in this book, which I'm sure she would agree with - if not now, then possibly in the future, unless we find a way of better understanding her and enabling her to express herself. The author conveys the pain and frustration of being constantly misunderstood, and the effect that can have on a person who has hopes and dreams that they can't share and that other people may not recognise as even existing.

"Children with autism are...growing and developing every single day, yet we are forever being treated like babies... Every single time I'm talked down to, I end up feeling utterly miserable - as if I'm being given zero chance."

The book takes the format of a series of answers to specific questions based on what people think they know about autism. I had a bit of a pang at this one: "Do you prefer to be on your own?" Because sometimes, honestly, Amy does seem to prefer to be on her own. (For short-ish periods - not all day!) But maybe this is her response to other people not understanding, or to the pressure of having to try so hard all the time.

"I can't believe that anyone born as a human being really wants to be left all on their own, not really... The truth is, we'd love to be with other people. But because things never, ever go right, we end up getting used to being alone, without even noticing this is happening."

Am I giving an impression of unremitting doom and gloom? It wasn't all like that. The bits that made me feel bad had that effect because they struck a chord with anxieties I already have about how best to help Amy engage with the world. Other bits I found quite comforting, like Naoki's insight on laughing. Noting that "sometimes people with autism...appear to be having enormous fun on their own, without any obvious reason for it" - yes, Amy often laughs on her own too (not to be confused with the crazy night-time laughing caused by gelastic seizures, which she occasionally has and which aren't one bit amusing for her or us) - he offers this explanation. I like it very much, and hope this might be how it is for Amy too.

"At times like this, we're having 'imaginings'. Or not quite imaginings, but we experience pictures or scenes in our minds that pop up out of nowhere. Maybe it's the memory of something that made us laugh, or maybe it's a page from a book we read."

What goes on in his head - and perhaps Amy's too - is taken up further in his description of 'flashback memories'. These may explain - perhaps - how Amy's memory works and why she is sometimes so upset for no reason that we can work out.

"We do remember what we did, when, where, who we did it with and things like this, but these memories are all scattershot and never connected in the right order. The trouble with scattered memories is that sometimes they replay themselves in my head as if they had only just taken place - and when this happens, the emotions I felt originally all come rushing back to me, like a sudden storm."

I could go on (and on). Naoki is very quotable, and I kept finding questions and answers that seemed to 'fit' - maybe, who knows - with Amy's experience of herself and the world. Why is she so keen on water ("In the water it's so quiet and I'm so free and happy there"), why does she like watching the same babyish TV programmes over and over again ("Not because of childishness, but because we can more easily guess what's going to happen next. This allows us to stay more relaxed and more engaged.") Even why does she keep doing 'that' with her hands: "The repetition doesn't come from our own free will. It's more like our brains keep sending out the same order, time and time again. Then, while we're repeating the action, we get to feel really good and incredibly comforted."

I think what Naoki is really trying to get across - and what I certainly took from his extraordinary book - is the essential 'person-hood', and inner world, of people like my daughter, who look so needy and problematic and dependent but who have huge inner strength. He reminds those of us who need to be reminded - I confess I sometimes do - that what we might have to deal with as parents pales beside what life requires of our children. It makes me admire and appreciate her more.


  1. That was a great post and I am going to look up this book and see if our library has it right now. Thanks for sharing! PS, what 'The BFG'? I'm always looking for new books my Lucy might like and she would probably also like to hear about giants eating children!

    1. Thanks Julie! The BFG = The Big Friendly Giant - by Roald Dahl. It's a great book, and fun to read. All the best to you and Lucy.