A revelation

We are on holiday. R is having a wonderful time in the pool, showing off everything that she has learnt at her swimming lessons: whereas in the past she would mostly bob rather aimlessly in the water, she can now swim the entire length of the pool, albeit with arm bands. She is very pleased and proud and so are we.

Before we left, I had a trip away on my own. A new organisation, Rett Education, had its inaugural conference in Birmingham at the weekend, featuring the very well known (in Rett Syndrome circles) educator, Susan Norwell. What I expected to get out of the day was a few ideas and suggestions for resources for the school and perhaps for her speech and language therapist. There was plenty for me to take home for her teachers, however, in the event, I got rather more out of the day than just this.

Susan Norwell is an engaged and engaging educator. It was great to listen to a professional who – like me – believes that Rett Syndrome is primarily a movement disorder.  Her talks were illustrated with multiple short videos of the girls with whom she works. She pointed out exactly how the girls communicated with high tech devices but also without any devices at all.   It occurred to me that while we mostly manage very well to understand what R wants, we have never been very good at articulating to others how we do this. It just always seemed rather obvious and we have never really unpicked what it is that R does that indicates to us “yes” or “no”.  Unfortunately, many of the professionals working with R, including her teachers,  have really struggled to see how R communicates, and we haven’t been able to give them sufficient pointers to assist them in doing so.

I told R about the conference the next day.  All fired up,  I told her that we were all going to be very consistent from now on and that she had to be too.  Using the model of one of the girls in the videos, I told her that she was to look at us when she wanted to say “yes” and look away when she want to say “no”.  R burst into tears. So here is the thing.  It turns out that this is exactly what R has been doing all along.  We always understood “yes” when she did this, and we mostly understood “no” but we weren’t really conscious of why.

We are spending the holiday with my parents. Together with R, I explained to them on Sunday what R does and what it means.  They have always had a good relationship with R but there is no doubt that for the last few days, they have been able to understand her a whole lot better.  R is excited by this and so am I. The future is, all of a sudden looking, a whole lot brighter.