Invisible disability

DSC_0924I was having a moan with a colleague this week.  She is also a carer and we were talking about support.  I grumbled that, three years on from our referral to social work, we still hadn’t been fully assessed for support, far less received any.  She found that astonishing, she said, because she knew of few children more disabled than R.  I was taken aback. She’s right, of course, but the odd thing is, we just don’t see it. In fact, by and large, we don’t really notice R’s disability at all. Sure, her health issues are a constant source of concern; yes, I am worried about her education; true, she has mobility, feeding, breathing and all manner of other issues.  But disability? Don’t see it.

I have no idea if this is typical and of course there are times when the disparity between R and other children is impossible for me to overlook.  Transitions are terrible.  R’s enrolment at school still stands out as one of the worst experiences that I have ever had as a parent. With a breath-taking absence of sensitivity, the council required that children who would attend the special school enrol at their local mainstream school.  Our local primary school is very popular, so this meant standing in a queue with almost a hundred other parents and children excitedly chatting about starting school, waiting our turn to see the Head Teacher.  R was the only child going to the special school. It was heartbreaking.

But apart from these odd occasions, what we see, when we look at R is only our bright and adorable little girl.  We see a girl who is cheeky, who likes her own way, who loves The Beatles, who would pick Pringles over parsnips every time. We don’t see her disabilities. We just see R. Perhaps that’s the point: Rett does not define R.  She is a little girl who happens to have Rett and all the baggage that comes with it; she is not a Rett girl (I hate that term). She is just R and that is a lovely thing to be.


While the news about the writing is exciting, I think that its only fair to R to point out that she is far from being a one trick pony. Her literacy has been preoccupying me recently primarily because we already know that she is numerate, indeed that she has an aptitude for numbers.

We discovered this entirely by accident.

We made the move to suburbia in time for R starting school. We had been living in a flat on the top floor of a beautiful Georgian tenement. This, of course, meant stairs. Lots of them. F and EB had to change schools. EB found herself in a very able class, which had been covering the curriculum much faster than at her previous school. Worse, we had taken our eye off the ball with EB, who started school the very week that R was diagnosed. EB was bright enough to work out very quickly that there was absolutely no need to learn number bonds or times tables when these decorated the walls of every classroom in her old school. In the new school, the lack of these basic skills meant that, despite being good at maths, she began to fall behind.

We started practising number bonds at the dinner table. Before long, we noticed that R pulled a face every time EB made a mistake. Sometimes, she was definitely scoffing. G said – confidently – that this was because R was good with numbers and knew the correct answer. I said that this was impossible – she hadn’t done counting at school, probably didn’t know what the numbers looked like and certainly hadn’t done arithmetic. So G tore up a piece of paper into rough squares, wrote a number on each and tested her, giving her a choice of two options each time. R looked at the correct answer, again and again.

We told her teacher the next day. She tested her – and again R got every question right. By the following night, R had maths homework.

Things have progressed slowly here too. In part this has to do with R being unwell for most of the last couple of years. But its also in part to do with the need to repeat the sums many times more than you would with a verbal child, just to be sure that R isn’t just getting them right by chance. (No one has told R about probability. Sometimes, when she is feeling contrary, she will deliberately get every single one of her homework questions wrong. She doesn’t know that 0/12 is just as good as 12/12 on a two alternative forced choice task and we are not going to be the ones to tell her. At least not any time soon).

R has been feeling a bit better over the last week or so (I am nervous typing that). Her success with writing stands as evidence to this. Still rather giddy with this success, we attended R’s parents evening this week. The SLT – who is, I have to say, now fully on board – and I have been discussing ways to allow R to make choices in a low pressure environment. In common with most girls with Rett, R gets stressed very easily. When R is stressed, she is unable to make even the simplest of choices. I suggested recording her responses so that her teacher could assess her performance off-line. The SLT has come up with a couple of templates for her Tobii – one for maths and one for reading comprehension – that the teacher can easily modify for homework. R was not thrilled by this news; she cast the SLT the blackest of looks. But we are excited. The picture is not great, and you will have to take my word for it that she didn’t just get lucky, but here is R, rather reluctantly, trying it out.


I can write

We have always believed that R is smart. Even when she was scoring a big fat zero in the IQ test, our belief in her abilities was unshakable (the educational psychologist was stupid, not R). Not only that, but that R is articulate, if only with her eyes. We have all become quite expert at interpreting R’s eye-language but, unfortunately, few outside our home understand much of it at all.

We established quite early on that R could read some words. On visits to our local museum, R would tap the text, demanding it be read, clearly indicating that she understood that words conveyed meaning. I mentioned this to her home visiting teacher, who brought along a few flash cards on her next visit. R surprised us all by pointing immediately to her name and then to each of the other words on request.

Progress has been slow since then. In fact, R has been bringing home Level 1 books from the reading scheme since she started school three and a half years ago. And while I don’t really blame the school – its very hard to know whether R is comprehending the task – I can’t begin to imagine just how dull this must be for R.

R was lucky enough to have a high tech communication aid – a Tobii eye gaze computer – funded by the education department. We were hopeful that this might help to accelerate her pace of learning but neither we (nor the school) have received much support to help R use it. She seems to find the limited array of symbols offered to her uninteresting. In its current set up it is inflexible and apart from as an MP3 player, R doesn’t generally care to use it at all.

But R has apparently decided to take things her own hands. She has a couple of alphabet toys like this one that she is fond of. Mostly, she likes to press the music button. Over Christmas, she started pressing the letters more often, and it quickly became clear that the letters she was pressing were associated with things that she wanted: D for Daddy, M for Mummy and so on. The Peppa Pig alphabet toy has “i for ill”, which she used to indicate how she was feeling.

Today, G asked if she would like a snack. “Y”. Would she like an apple or banana? R pressed “P”. Anyone that knows R, will understand that this was not a slip of the hand but in fact stands for “Pringles”. G said no. And R said “W” (why, *cross face*).

All of which is almost worthy of the blog post, but then this happened.


Orange is for The Amber Spyglass

amber_spyglass_coverThe children have been back at school for a week. A new year and a new term. It’s a big year for EB who will join F at high school after the summer. It’s a great school by any bench mark. F is being motivated and challenged and pushed on in every subject (not just the academic ones either) and he is thriving. EB is going to love it too, I’m sure.

Watching F and EB progress at school only serves to emphasise just how slowly things move in R’s. R enjoys school and she is very happy there and there is no question that it’s the best option available at present. A disastrous placement in a mainstream nursery confirmed that to us. But still, the gap between what R is learning and what eight year olds in a mainstream setting learn is growing – depressingly – ever wider. This week, R’s switch conveyed the news that they were learning all about “Orange”. R has been secure in her colours since P1 at least. That she should be revising these once again in P4 makes me despair.

U, a colleague of ours, has been the source of many books and audiobooks for our children. Her choices are never obvious and always interesting. A while back, U gave R Rudyard Kipling’s Just So Stories, read by Johnnie Morris. To my admitted surprise, it turns out that R enjoys many of them. The best part is that she doesn’t like them all. “How the Whale got its Throat” makes her chuckle; “How the Camel got its Hump” is always greeted with complaints. This is true regardless of the order in which they are played.

Since the arrival of our children, we have listened to a lot of audiobooks. Long journeys, such as those that we regularly make to Germany, Austria and Switzerland, require audiobooks for entertainment. These days, I tend to pick classic children’s novels that F and EB may not perhaps (read: would never in a million years) choose for themselves. So at various times we have listened to The Borrowers (we all loved this), The Railway Children (ditto), Anne of Green Gables (ditto), Emil and the Detectives (in German, to the undisguised disgust of the children, though they enjoyed it all the same), Ballet Shoes (only EB and I liked this one) and so on. R’s tolerance for these varies and, particularly when she is unwell, she frequently prefers to listen to stories that she already knows well. We all know The Enormous Crocodile by heart, complete with the full range of Stephen Fry voices.

Before we left for Christmas this year, U presented the children with unabridged audio copies of Phillip Pullman’s trilogy His Dark Materials. For anyone who hasn’t read these – do it now. I am not a fan of the fantasy genre (I am not afraid to say that I don’t like Tolkien) but these are terrific. They are brilliantly imagined but very convoluted and demand your attention. So, not perhaps everyone’s first choice for an (allegedly) cognitively impaired eight year old.

We didn’t dare try the books on the way to Germany because R was so agitated and it wasn’t until we were half way to Switzerland that we put on the first CD. And then there was silence in the car. Everyone, including R, was rapt. No one slept. We listened to the story without interruption all the way to Switzerland and then all the way home. We reached the end of book two just as we arrived back in Glasgow.

What this means of course, is that we are all desperate to find out how the story ends, and so R’s current bedtime story is the final book in the trilogy, The Amber Spyglass. The cover is a lovely burnt metallic orange. A perfect example for her colour homework, I think.