DSC_0005R hardly ever cries. But when the tears come, it’s heartbreaking.  R never cries out of frustration – though she has much to be frustrated about – or anger, only sadness.  As her mother, of course I want to be able to stem the flow of the tears and offer her words of reassurance and comfort.  Not knowing why R is sad is painful and comforting her is so very hard to do.

It happened again tonight.  R has had a good day.  She went horse-riding with friends from school and had a great time.  Later as EB, R and I sat cuddled on the sofa watching television, the cat – we have been adopted by a cat – came and sat by her for the first time, much to her joy. It’s an absolute outlaw of a cat but it likes R because she leaves it alone.  She squealed happily as we recounted her day to G, who had been away. And then, as G brushed her teeth at bedtime, her face fell and the tears started to fall. Great big tear drops rolled down her little cheeks. Everyone tried to comfort her.  F even stopped playing on his drums, which helped a little (me, anyway).  EB clucked.  And then G spotted it. The platypus.

EB has been tidying up.  What this means in practice is the transfer of toys and books that EB considers that she has outgrown from her side of the bedroom to R’s.  EB got a huge fluffy canary yellow duck-billed platypus pillow (!) from a friend as a birthday present a few years ago. EB had arranged this platypus in R’s bed today.  I moved the platypus while G was brushing R’s teeth, because there was no room in the bed for me when I read R her bedtime story.  R was very disappointed.

So tonight in R’s little bed, alongside her teddy, is an enormous canary yellow duck-billed platypus.  And a very happy little girl.


We are lucky in the UK. Healthcare is free at the point of use and by and large access to it is very good.  Some provision, however, is uneven, with a clear weighting away from paediatric and towards adult (and old age) services.  If I were cynical, I might suggest that this is because paediatric patients, especially those with complex needs, do not vote and may never be in a position to exercise their vote.

Take Speech and Language therapy for example.  R has an obvious need – she is non verbal.  Her need for Speech and Language input is explicitly stated in her Coordinated Support Plan, a document which outlines the services that R should be provided with in order for her to access education.

Speech and Language therapy (or SALT) for children falls within the shadowlands of the NHS, part funded by the NHS and part funded by the council education department.  The service is delivered at school. (When R was very little, she couldn’t access it at all as she wasn’t granted a specialist nursery placement. Without the nursery placement, the waiting list was more than 18 months for a triage appointment.)  I understand the benefits of providing this service at school – reduced travel time for staff and/or parents, fewer missed appointments and the ability to support the teaching staff to apply appropriate strategies in the classroom.  All of this I understand.  What I don’t understand is the reluctance to fund this service at a level that is in any way useful.

At well over 100 pupils, R’s school is large for a special school.  Virtually all of the pupils at the school require SALT at some level.  A rough calculation would suggest that across the school day, allowing for snack time and lunch, a SALT could comfortably see 9 or 10 pupils – lets call it 10.  This allows for a bit of report writing and interaction with the class teachers.  So, if 100 pupils receive input one day a week that would require 100 sessions over 5 days.  So, R’s school needs at least two full time members of staff.  Ideally, the children would be seen more than once a week.  So, not less than four full time members of staff then.  The sums aren’t hard.  Why then, when the allocation is made, does the school only have the equivalent of a single SALT three days a week?  The consequences of this miserable allocation are that no one gets a satisfactory service.  The caseload is quite simply too much.  R has yet to receive a single set of targets after nearly four years at the school.  Apparently targets have been set.  They have never been communicated to us or to her teachers, presumably because there is no time available to do this.  Reports are never written. And despite a formal complaint – which was upheld – the service has not improved. It’s clear that it won’t improve until it is adequately resourced.

By contrast, adults with acquired speech and language impairments are well served. The service which they receive is differently organised and differently funded but the nagging suspicion remains that the primary difference is that children are lower priority.  I am genuinely baffled by this.  Politicians should surely be able to recognise that it is potentially going to cost them far more to support a young person for the length of their life than an older person.  The more that the young person can be supported towards independence, then, the greater the saving to the public purse in the longer term. But perhaps, politicians are only thinking as far as the next election, and R and her school mates won’t be voting any time soon.


We received R’s report card this week. The report comments that R can be inconsistent when she is tired or unwell and that, as a result of this inconsistency, she is not ready to move on. I am disappointed and a bit frustrated. In mainstream schools, perfect performance on multiple tests is not required for a child to be allowed move on to the next level. This seems to be what is being asked of R.

In psychology, a common experimental procedure is to ask a subject to make a choice between two alternatives; only one alternative is correct. This procedure will be repeated on several (sometimes many hundreds of) occasions. If the subject makes the correct choice half of the time then it can be reasonably assumed that he is only guessing. If the subject makes the correct choice on three out of four occasions on average, then the chance that the correct answer has been arrived at purely by guessing is very small and the subject is assumed to have been able to do the task. R is usually tested by this procedure and she regularly gets every question right. Occasionally, her score drops below 100% but rarely below 75%. And very occasionally, when she really doesn’t want to do it, R gets every question wrong. (This is exactly equivalent to getting every question right.)

For psychologists, one of the ways to think about how humans are able to process information (or signals) is to consider the noise that is present within the system. For example, imagine the scene – R is unwell, and I am concerned with making sure she is comfortable, F is upstairs playing on his drum kit (what were we thinking?) and EB asks for a biscuit. I nod my assent. Two minutes later, I ask EB why she took a biscuit without asking. There is noise in the most literal sense here – provided by F’s drumming – but my focus on R and how she is feeling introduces further “noise” which also interferes with my ability to hear and to process EB’s question. Psychologists also think about the noise on a much more “microscopic” level – within cells of the nervous system itself.

Increasing the noise in a system whether at the macro or micro level, decreases the chance that any signal is going to be detected: if you have noise on a phone line it can be hard to understand what a caller is saying. If you have Rett syndrome, there is a whole lot of noise in the system. The level of the noise varies. For example, when R is well, she is much better able to communicate via her Eye Gaze computer than when she is unwell. It’s a complex procedure after all. We ask R a question, she must hear this question, process the information, formulate a response, and send the message to her eye muscles in order to move her eyes such that she fixes on the correct answer. When R is unwell, the increased noise at any of these stages could be enough to prevent her from completing the task. The experimental psychologist would be happy with her picking the correct answer three times out of four. Special schools seem to set the threshold far higher.

Post Script

Reading it back over, I am concerned that this post implies rather more criticism of R’s school than I had intended.  So to be clear: my criticism is of the system of education rather than her teachers.  Her teachers try very hard to find ways to explore R’s understanding but they are starting from scratch and I doubt very much whether teacher training includes classes on Signal Detection Theory.  Perhaps it should.