My daughter Eva has Rett Syndrome; a rare neurological disorder that in her case, left her locked in a body that would not work for her from the age of 9 months. I went from being a photographer to being a mum to being a rudimentary therapist, advocate and ranter. This blog is here to share ideas, thoughts, therapies, recipes, advice and sometimes have a rant. or two.

Monday, March 26, 2012

Yes No Yes!

We have had lots of issues with Eva's communication and only recently found a method that works for all of us. At the start of this year I had reached breaking point wondering if Eva was really there. We had had weeks of inconsistency and uncommunicative behaviour and I was feeling disillusioned and confused. I felt so guilty about not having faith in her that I kept putting off what I should have done a long time ago: I rang a woman I can only describe as a legend. She is a Speech Pathologist who has worked with many girls with Rett Syndrome and came highly recommended. She saw straight away that we were asking Eva to respond in so many different ways that she was just as confused as we were. We had leg-kicking for yes, nod for yes, look at yes with eye gaze, try and vocalise for yes, stay still for no, shake your head for no, look at no. It was a nightmare. 
With her suggestion we now have a little biscuit box covered in white paper and velcro strips with little laminated symbols for yes/no and a variety of other words. We can make it as simple or as complex as Eva can handle and after just three weeks she is reaching for her answer with almost no assistance at all. It's blown us all away.  I don't know if she was just ready to do it or whether we just happened to stumble upon something that works for her. We all still have our training wheels on but I feel for the first time in ages that we are opening up the lines of communication and our little girl has responded with a very definite YES!

Eva's 'talking stick'

Sunday, March 25, 2012

Sunny Sunday afternoon

Today we went to our kindergarten welcome party.. there was around 150 kids and adults in a small grassy playground and it was mayhem. There was a sausage sizzle, bongo drums, sunshine and nervous parents all hoping to like the other parents. Especially the parents of their kids friends. Eva is the only person in her kindy with a disability and it's never more out there and full-on than when we are surrounded like we were today. But I met a couple of lovely parents and lucky for me the parents of Eva's mates are lovely, normal, friendly people. Of course they are - that's why their kids have treated Eva no differently right from day one. Champions!