Connie has Rett Syndrome. The most common question we get asked by people when they find out is “what’s that?” And other than giving the general answer of ‘a neurological disorder’ there isn’t much more we can say. It is too hard to explain without spending an hour or two going into depth about everything. Hopefully, this blog will give people a real insight into the realities that we face of Rett Syndrome … an insight we can’t give by just a sentence describing it. Every Rett girl is different but this is what we as a family face.
One common feature of Rett Syndrome that we can talk about is hands. It is characterised by the loss of purposeful use of the hands and distinctive hand movements and this is the feature that we notice the most in Connie. We never noticed anything about Connie’s hands until it was pointed out at her diagnosis but when we look back we can see it is something that she has done her whole life and it has gradually got worse.
Often, you can look across at Connie and find that she is wringing her hands together in a forceful movement whilst clenching her teeth and making a loud ‘mmmmm’ noise (sorry that’s the best way I can describe it!). For Connie, we think it is an involuntary action and that most of the time she isn’t aware that she is doing it. She repeats this action about 20-30 times a day!
For Connie, it is for the most part involuntary and for us we don’t even notice it – we have become that used to it. That is definitely not the case when we are out and about. Connie gets given a lot of looks and the odd comments (which we could do a whole post on itself…you would not believe what we have heard people say!) but you can’t blame them. How can we get mad at them when they don’t understand. This is one of the main points of this blog – to raise awareness both of Rett Syndrome and of family life. We will be doing some more posts about Rett Syndrome in the coming weeks because October is Rett Syndrome Awareness Month. To find out more about Rett Syndrome head over to Rett UK.
A quick little update on Con this week for you. She has been out at college everyday doing cookery and life skills. Monday night she went to the chip shop in Halton with Aunty Susan which she was very excited about because she hasn’t been there before! Tuesday night was spent being looked after by Nana whilst mum had a meeting … not sure many Nana’s expect to be looking after their 20 year old granddaughters when they are in their 80’s but ours loves it! Her and Connie are best friends!
Keep liking and sharing our posts and we will be back with another post soon!