Along with Rett Syndrome, Connie also has severe learning difficulties. For Connie, this means that she cannot read or write and has the mental age of a 2-3 year old.
When it comes to writing, Connie isn’t able to hold a pen properly or draw shapes. If you are lucky enough to manage to get her interested in writing then on average the most you will get is a squiggle or her version of a circle. If you are extremely lucky, she will attempt to follow the dots to sign her name on someone’s birthday card but by the time she gets to he first ‘n’ she loses patience.
Unlike with writing, where Connie will have a sort of attempt, Connie cannot read at all and this limits her everyday life completely. She cannot read signs, notices, instructions etc. and this can put her in danger. Her latest thing when we are in the car is asking what every sign says … not too bad if you are just nipping to the local shop but on our recent trip on the motorway to Manchester Airport I saw the downside to her curiosity! Instead of reading a book, Connie loves to read the Argos catalogues. She sits at night and looks for things that people might need or want. You can imagine her excitement when the latest Argos catalogue is released!
Connie is able to talk – and don’t we know it! Her talking can sometimes be a struggle for us to understand and for those who do not communicate with her every single day it can be hard to understand what she is meaning. One day she had us searching around the house for a ‘pring’ … we had absolutely no idea what she meant but she was adamant she wanted a pring. After searching high and low trying to find a pring she managed to find what she was looking for … a spring! We have no idea why she wanted a spring but it was a struggle to watch her get agitated trying to make us understand what she meant. Often if we don’t understand her she will look for a visual that she can use to show us and help her explain … finding a visual of a sprig was very hard for her! She is forever chatting away – which is of course a good thing – and it is mostly questions. She asks herself them and everyone else. She loves to know what people are doing, what they are wearing, where she will be going. God forbid you tell her anything exiting is happening in advance. Our cousin recently got engaged and we get asked every single day without fail what we will all be wearing for the wedding. The event isn’t taking place until 2018 … it is going to be a longggggg wait!
Even though Connie has severe learning difficulties, one of the amazing things about her is her memory. She seems to remember everything! If someone moves a picture frame in their house or changes where they keep the TV remotes, you can guarantee that the next time Connie arrives she will notice it straight away and ask you about it. She regularly brings up names of people we knew years ago and asks where they are, where they are living – basically their whole life story! She loves being nosey … just like the rest of us! If you are out driving she will remember if a road is closed or if you are going the wrong way and let you know straight away believe me.
Having severe learning difficulties has majorly affected Connie’s life and ours. We live in a constant world of CBeebies, cuddly toys and picture books. It is the reason that means she is unable to do so many things that we all take for granted. Linking in with her Rett Syndrome, it is bittersweet to look back on how she was at the age of 18months-2years. She was achieving everything a person of that age should be and to look back now we realise she is still at that same point. But the reality is that we just have to encourage what she can do and embrace it. Any little everyday achievement is a massive thing for Connie so we celebrate it!