In the days before Rett, I’m not sure that I ever really gave much thought to what accessible means.  I’m pretty sure, for example, that I thought an accessible toilet was one with a door wide enough for a wheelchair to pass through.  Once inside, I must have imagined that the user would swing like a paralympian in one easy and athletic move from chair to pan. One of the reasons for this delusion must surely be because a toilet with a wider doorway is pretty much what passes for a disabled toilet in most places*. People with disabilities are rarely able to swing athletically around public conveniences, however.  Girls with Rett Syndrome never can.

We have a pressing need to make our house more accessible for R. We moved to our present home thinking that it would work for us, but a decline in R’s mobility shortly before we moved in, the need now for overnight care and possibly also an overly optimistic view of the future at the time of purchase mean that the house is fast becoming unsuitable for R’s needs. G and I can still carry R up and down the stairs, but she is much too heavy for her grandparents.  Lifting R in and out of the bath is still possible but we won’t be able to do this safely forever.

In these straitened times, our local council has taken the decision to cease the payment of grants for extensions.  The Occupational Therapist informed me that, instead, the council will pay for a lift to be installed.  She arranged for a sales representative to visit.  After considering the layout of our house, the rep said that the only possible location for this would be through our living room and up into our bedroom.  Having a “feature lift” in our living room is not terribly appealing.  In any case, hideous or not, the drawback of this solution for me is that it deprives R of the independence to move freely around her home because she would be unable to operate it alone.  How much nicer would it be if she could take herself off to her bedroom if she wanted to?

We don’t want to move. We like it here.  Moving was helpfully suggested by the Planning Office when I told them that unless we made major adaptations to our house, we would need a long and unsightly ramp running the length of the front of the building. (Moving is all very well but where to?  Where are all the accessible houses? Oh, there are none).

After several years of saving and procrastination, we have finally started along this road.  We met with an architect this week. R liked him.  He said that it was the first time the client – and R is the client – had given him a cuddle at the start of a project.  The implication, it seemed, was that clients do feel so moved at the end of the build, which I found immensely reassuring.  It’s going to be heart-stoppingly expensive, of course.  Already our wish list has been pruned back to the bare essentials. There is no alternative, however.  We need to create an accessible space for R.

*Truly accessible toilets look like this

On swimming lessons

I have a confession: I hated every minute of F and EB’s swimming lessons. The whole process was a chore. F and EB (EB especially) would moan throughout. It was cold. The timing was always inconvenient. There was always a parent who would reserve the one disabled/family cubicle*, with her bags, for her one child, while I struggled with my three. There were never enough showers. There was always a parent who would hog the shower, completely oblivious to EB, who was turning blue, while her (it was usually a women, I’m afraid) offspring underwent a full spa treatment. I can’t begin to tell you how relieved I was (we all were) when EB finally graduated.

We hadn’t really considered swimming lessons for R. She likes swimming though and seems to be the most naturally boyant of the three. Her school has a hydrotherapy pool, known as “The Spa” (no irony intended – its lovely and is fitted out with sensory room style lighting) and she gets to go swimming every week there.

Not long ago, our local council announced that they would be offering swimming classes for children with disabilities and so forgetting all my misgivings about swimming lessons, I immediately signed R up. In retrospect, I’m not sure that the council had given sufficient consideration as to how this would work. The range of disability in the classes, for example, spans a broad spectrum, from mild to severe, and includes physical and learning disabilities. Certainly, the staff ratio is good (better than 1:1 most weeks). But the coaches are mainly young and inexperienced and while they are almost all open, fun and friendly, I’m sure that the majority have little experience with teaching children like R. It’s quite an ask of such young people.

After a few weeks, watching the young coach assigned to R swoosh her around the pool, while looking over the top of her head and not speaking to her once, I decided to offer a bit of constructive criticism. I suggested, not unkindly I thought, that perhaps talking to R and allowing her to move independently around the pool might be more productive. It would seem, however, that coach  felt a little differently about my softly softly approach to feedback and now she won’t look me in the eye either. And R has been allocated a new coach. This coach is a little older – in her twenties at least – and has taken to R and R to her. She has been working hard with R to encourage her to kick her legs in the water, and even to swim (float) on her back. It’s been great to watch. R shrieks with delight when we tell her Dad afterwards what she has been doing.

The final week in every 4 week block is “Family Fun Week”. F and EB enjoy this as much as R. I dread it. As someone who has been cursed with that least attractive of the celtic skin tones – North-East Blue – I try to avoid exposing my flesh in public places. So I was watching through the glass today as this lovely young coach spent the first half of this session (when all the other coaches were playing on the inflatables) demonstrating to G what she and R have been doing and discussing where they should go next. R beamed the whole time. Whatever this young women gets paid, it surely isn’t enough. R is so lucky to have found her. R’s lessons are a joy.

*Note to Councils – having a family is not a disability.  People with disabilities and their families need accessible changing rooms and should not have to compete with families with school age children for the use of these. Next week: the need for coat hooks and nappy bins in disabled toilets.

On hospital admin and IT

R is back in hospital. I am writing this, as R sleeps, to a non-stop soundtrack of “The Big Bang Theory”, courtesy of the teenage boy in the opposite bed (please let it stop soon).

It was a planned admission this time, which is something of a novelty. But it’s been far from straightforward getting this far. Clinical care, as always, has been good. When your child has a complex health history, it seems that you are spared, by and large, being treated by junior doctors: for as long as I can remember R’s care has been delivered by consultants, regardless of the specialty (the unfortunate exception to this is A and E where there is a tradition of using junior doctors as canon fodder).

This high quality of care contrasts sharply with the administration procedures in place to support it. In particular, it seems that the (new and hugely expensive) computer system at R’s hospital is seriously flawed. R’s current admission required coordination between a number of specialties. This proved almost impossible to achieve. Letters from one specialty to another do not appear to be flagged up by the system for action by the consultants involved. It was me that had to coordinate things in the end. One specialist was informed this morning that R was a no-show by the day surgery unit. That she had been admitted to a ward several hours earlier surely ought to appear on the hospital computer system but apparently it doesn’t.

From where I’m sitting, it would appear that the problem lies in procedures which assume a linear – and predictable – patient journey. Patients with complex needs may be a minority group but they account for a disproportionate number of hospital appointments and admissions. A system optimised for this group would work for all patients. The fault lies not with programmers, I suspect, but with the administrators and managers who commissioned the software. Who did they consult? Not me. Had they asked, I would have also suggested that every patient record have a front page listing all the current diagnoses and medications and involved specialities; that it would be impossible to close a record without this being updated; that all new prescriptions be automatically shared with the GP. But they didn’t and it doesn’t.

Things went ok today in the end and R is recovering well. But it could all have been so much better.


Saturdays are stupidly busy in our house.  Alongside all the usual weekend chores, the programme for the day includes three gymnastics classes and orchestra for EB.  Gymnastics is a bit of a “thing” in my family.  My mum did it, I did it and, since they were very small, so have F and EB. It was never the grand plan but somehow they found themselves directed towards a branch of the sport called Acrobatic Gymnastics, in which gymnasts perform in pairs or groups.  For a busy mother (is there any other kind?), this has one particular advantage over most other sports: boys and girls always train together.

F and EB used to train in an elite facility in the city.  It was a very serious business, and the training hours were long and always increasing.  Training was held behind closed doors. Parents saw their children perform only when they they were entered for competitions.  They were only entered for competitions if they were expected to win.  F, in particular, stopped finding it fun, stopped working hard and stopped progressing. It might have been a very serious club but their coach was nevertheless a very reasonable man.  He suggested that F and EB should try a different club.  Not only that, he facilitated the transfer.

The move to the new club has been a great success (one of the keys to this, is that the new club also offers members the chance to compete in Tumbling; as my friend C commented, Tumbling is just another word for showing off).  R and I loved the new club straight away because here we could see the children train: both Tumbling and Acrobatics are spectacular sports and great to watch. However, R quickly decided that spectating wasn’t enough.  She wanted to join in too.  She made this very clear by tapping the registration sheet very pointedly every time we arrived and by screaming very angrily when she wasn’t allowed to join in.

If you have read this blog before, or know something about Rett, you will appreciate that gymnastics isn’t the most obvious sport for R. That said, the alternatives typically offered to children with significant disability – like Boccia – aren’t really suitable either (besides which, R thinks that they are beyond tedious). A chance conversation with another parent at school alerted me to the fact that there was a recreational class for young people with disabilities back at the old gym where F and EB used to train.   With R anxiously looking over my shoulder, I composed an email to the Head Coach, including frank details of R’s disabilities.  The same evening, the coach emailed back offering R a place in the class.

So it is that for the last year, our final gymnastics class on a Saturday, and undoubtedly the highlight of our week is R’s class.  There cannot be a more enjoyable class anywhere.  F and EB are allowed to take part and they love it too. R is the most physically disabled child in the class … and it really doesn’t matter. We have discovered that R is a natural on the beam (yes, really) and she loves the trampoline.  Socially it’s brilliant, for R but also for me.  And not long ago, one of F and EB’s coaches told me about Disability Acrobatics, in which one (or more) of the partners is able-bodied and supports the partner with a disability.  It rather seems like that there may have been a grand plan after all.