It can be easy for people to look at Connie and take her as someone who is just different to everyone else but to us she is ‘Just Connie’. She is just the fun loving girl that we have lived with for the past 20 years and we know no different. In the middle of a tropical storm one night on our first family trip to the USA after a day in the theme park trying to explain to people that Connie couldn’t go on the ride that my mum and I realised that there is a whole world that we live in that people have no idea about. On the surface we look to be a totally ‘normal’ family; parents with two daughters and a son. If people could have a real insight into our lives though, it would soon become clear that our lives are far from anything that would be considered ‘normal’ – whatever that is!
A bit of background about Connie for you …
Connie was born in 1996 and for the first eighteen months of her life, everything was exactly as it should be. At around 2 years old, my parents started to notice that she wasn’t able to do the things that were expected of her and her abilities continued to regress. It wasn’t until she aged 13 that we got the diagnosis of Rett Syndrome. Rett Syndrome is a severe lifelong neurological disorder that occurs almost exclusively in girls. It can be life-limiting but definitely life-changing. Connie originally went to a mainstream school with support for about a year but then was moved to a specialist school after it became clear that it wasn’t the right environment for her and has continued to be in specialist education for the rest of her life. She has recently moved to a specialist college that she attends full time. What makes Connie different to others? Connie cannot read or write, cannot wash or bathe herself, cannot go to the toilet alone, cannot be unsupervised – cannot independently do the things that an average 20 year old does. But that doesn’t stop us giving her the opportunity to experience everything that she wants too.
We see Connie as ‘Just Connie’ because that is what she is to us. I have grown up with her as my younger sister and have learnt fast that we should not settle for anything for Connie just because she has a disability.
This blog is for Connie and about Connie. We hope as a family that it will be able to give people a real life insight into what effects disability can have on a family lifestyle and we hope it can help other families in a similar situation to ours. Connie will be out and about socialising in all her favourite places and keeping everyone updated as she goes. My mum and I will be posting on the blog and social media about every single aspect of Connie’s life and about all the things we have had to go through to get Connie to where she is now. From the basics of looking after Connie 24/7 to where the cheapest place is to find products we use everyday like her nappy knickers. From the opportunities Connie has open to her to the experiences we have out and about with her. From airports to cafes, camping to Disney, social workers to socialising- we want to share it all.
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