I was 3 when Connie was born and for 2 years everything was pretty much as you would expect. Up until I was 5, nothing in my life was any different to anyone else. It was at this age that things started to change for Connie as her Rett Syndrome began to take effect even though we didn’t know that was what was happening (we didn’t get a diagnosis until Connie was 13). It was when Connie was 2 that my life changed forever without me even realising it.
In this picture, we were on our first family holiday abroad in Gran Canaria and this is the furthest back that I can remember having to ‘care’ for Connie. We were both booked into the ‘Kids Club’ but I spent the entire time at the club looking after Connie as there wasn’t any staff member that was ‘trained’ to look after her. It was my job to make sure she was okay, to take her to the toilet and to make sure she was behaving as much as she could so that we didn’t stick out like sore thumbs! Looking back, I can see this was when I started to take on the role of looking after Connie whenever I was with her.
For about 18 months, Connie attended the same primary school as me with a support worker. Most lunchtimes I would go and visit her to make sure she was okay and if they were struggling with her in class then they would send for me to come out of my lesson to go and sit with her in her class. Often her ‘one to one’ support worker was used as more of a teaching assistant for the whole class leaving Connie unsupported. As horrible as it sounds, it was a relief when my parents made the decision to take her out of mainstream education because even though I was gutted that my little sister wasn’t at school with me like everyone else, it stopped me of worrying about her all day.
Growing up I became more and more aware of Connie’s needs and learned fast how to look after her properly. Through high school I was never identified as young carer but I was always happy to talk about Connie to anyone who wanted to know more. I grew up inviting friends round for tea after school whenever I could – it gave them the chance to see and know Connie which was important to me. I have never wanted any of my friends to feel uncomfortable around Connie or around disabilities as a whole so they have been invited to everything. Of course some people weren’t overly interested and it is safe to say they aren’t my friends anymore but the friends I do have now know Connie really well.
As soon as I was old enough, I was helping to dress Connie, helping to wash and feed her, helping with any medication. I never wanted to be out of the loop because I knew that would mean that I wouldn’t be confident in caring for her. This has especially come into play over the past year where seizures have become a part of our life along with all the medication for them – if I hadn’t got involved I would not be able to care for Connie full stop and that would break my heart.
Through growing up learning how to care for Connie and give her everything she needs, I have been able to step in when my parents need a break. With me in place at home they have managed to go away on holidays for a weekend or even a week … I think the longest they managed to get away for was for 10 days. (I was shattered by the end of that one!) I love that I am able to do this and hope this never changes. It works both ways of course because once they have been on their holiday it means I can go away with my friends feeling no guilt at all!
Being a young carer is hard but so many people do it without even realising it. Even though at times I wished I just had a normal family (yes it sounds horrible to say but of course I have thought it sometimes!) growing up caring for Connie has been one of the best experiences I could have asked for and I wouldn’t change that for anything. Yes I have to deal with a lot (you name it, I have seen it or cleared it up!) but that is part of life and any young carer, no matter how big or small their caring duties are, should be proud of what they are doing. They are making a difference. You are making a difference. We are making a difference.