In October, I went on two courses. One was run by Rett Education UK, and the other (a two day course) was run by Rett University. Both courses were presented by the amazing Susan Norwell, who runs Rett University, and were focused on teaching our Rett girls to communicate, read and write.
There was so much information presented on these courses, and at times I felt very overwhelmed - both at the steep learning curve ahead for me and Jess, and also the sense of responsibility of wanting to make sure we do the best for Jess, and give her every opportunity possible.
I so much want Jess to be able to communicate fully with us - to be able to say whatever it is she wants to say, whenever she wants to say it; and not be forced just to choose from two options. I want to get to know her properly. Being able to communicate fully like this would improve her quality of life - for her entire life - so much. Being able to tell us when she is in pain, who looks after her well, being able to communicate with ANYONE, not just us or those who know her well. The difference this would make to her life is immeasurable.
The courses really brought home to me was that Rett Syndrome is NOT a cognitive disorder, but a neurological, physical disorder. Rett girls are traditionally thought to have a severe learning disability, but with the advances in technology and the use of Eye Gaze computers, this assumption is being challenged. Many Rett girls, given the appropriate tools to communicate, are showing that actually they fully understand everything going on around them - they are just not able to express themselves easily. Susan had so many amazing videos of Rett girls and women communicating in a wide variety of ways - all in context and meaningfully, demonstrating that they had full understanding of the topics being discussed.
One of the factors that significantly affects Rett girl's ability to communicate is their apraxia. Apraxia is the difficulty or delay that they experience in completing a physical act on command. In simple terms it is the delay after the message leaves the brain, and then results in a physical action, even though the cognitive understanding and intention were there. This delay in a Rett girl responding to a question or command may mean their response is missed or misunderstood. It also means that people may assume that the Rett girl didn't understand the question or instruction, but this is not necessarily the case.
The other major take-away message from both courses was, no matter what form of communication your Rett girl is using - PODD books, Tobii, high or low tech - the key is in modelling it. Talk to them using their form of communication - in essence, learn to speak "symbol"! By constantly using their form of communication, they will see how to use it, as you are demonstrating it to them. They will be able to learn what lots of different symbols mean, and you will be able to really immerse yourself into the techniques required, and will see what works, what doesn't work, what symbols are missing and be able to amend as needed. However, this is much easier said than done, and this did made me feel very overwhelmed - how on earth are we going to achieve this?
There was so much information over the three days - far too much to include on the blog here - even if I had understood it all, which I didn't! So I will just put the links to Susan's two websites:
Focused Learning Solutions
Rett University provides on-line courses for teaching Rett Girls literacy, reading and writing. If you are thinking of doing this, then definitely do look at these websites, if you haven't already. The guided Reading 1 course provides suggestions on how to adapt reading books and activities to teach the girls to read, which is something we are planning to do with Jess.
So, using the information from these days, we have started to use the flip chart books, sold through Rett University:
Here is a link to Susan Norwell demonstrating how to use these books:
flip book demo
The first time I showed these to Jess, I showed her how to use them by writing "I love Jess". I wrote the "I" and the "love" using the core word book, and then spelt out "Jess" with the alphabet book. This is what she wrote back:
|This is what Jess wrote on the day her new hospital bed was delivered - she was very excited!!!|
|Anna is Jess's little sister.|
|This is the Eye Gaze Device mounted to her wheelchair|