Hi. My name is Ruby. I’m 13 and I’m what people call a Young Carer. I am a young carer because my younger sister has mental disabilities. You don’t actually have to look after a person in your family who is disabled to be a young carer, what matters is the fact that it can still affect you. I decided to write an article about what it’s like to be a young carer, maybe to give new-comers a little bit of an idea on what it can be like and how it can affect you – I’m not saying it will be like this for you though. I’m also writing just to tell other people what it’s like for me.
My sister has some common disabilities, like ADHD (Attention Deficit Hyperactivity Disorder), Dyslexia and Aspergers syndrome. The other disabilities she has I can’t remember, I should really know and remember them but I feel as long as I know the main ones then I am ok.
I vaguely remember when Mum and Dad told me that Lily was different to me and other kids, but it was a good different, and at the time Lily only had Dyslexia, so in a way it was a starting point. They explained to me how it would affect her. At the time we had no idea her disabilities would progress to such a high level. But I was ok with that; I thought “cool, my sister is different.” Since then it’s just become part of my life and I’ve learnt to accept that. But sometimes it can be really difficult.
There are the occasional moments when I really want to scream; “AAAAAAAA MAKE IT STOP!” But then I remember, she’s my sister and I love her. Somewhere deep DEEEP DOWN, I always manage to find my love for her. And then it all comes down to the tantrums and the thumping, screaming and shouting that we receive from her. These are the moments when you think all is gone and life is pointless. I just tell myself: don’t think that way! Yes it is INCREDIBLY EMBARASSING – especially in public – but it is just a fact of life that you learn to live with. It’s the loud and proud part of your family member going “HEY I’m not invisible! Look at MEEEEEE!”
It can be annoying though, because I don’t have my friends home for tea or anything, because she will misunderstand and I wouldn’t be left alone with my friend. When we go out, if Lily starts kicking off I hope that none of my friends or anyone that I know is around to see my sister screaming and shouting. It’s not that I’m ashamed to be her sister; I’m not because her disabilities have caused me to mature at a younger age and actually have some common sense. It’s because people make fun, not just of me, but of her too. That upsets me. She may be different mentally but that doesn’t make her any different to anyone else in this world, she is the same as everyone else, it’s just going to take her longer to learn and stuff. Even if a few kids at school are making fun of someone disabled that I don’t know it sends me up the wall! They automatically think “oh that person is disabled! It’s funny. They look / act different; I can make fun of them because of that!” It’s stupid because they don’t know what it’s like for us, the people who love and look after them, and what the disabled person is really like.
I have things that help me sort of relax and stuff, like music. I LOVE music, I’ll sing in my room until I can’t sing no more – BUT I won’t sing to anyone else, or in public. I also go to a club called Stage Door Juniors. We are putting on Bugsy Malone at the moment, it’s an amazing musical and I have a speaking part! I also like to draw and stuff. I’ll be doing GCSE’s soon. Mum is worried that I won’t be able to study or do homework properly. She thinks Lily might be too much of a distraction but I’ve done alright so far with homework, so I think I’ll do ok.
Only my closest friends and the ones I really trust know about Lily. I think that I shouldn’t really go around saying “I have a disabled sister.” I’m not one to boast, I’m quite shy really. I won’t be the one who is always putting their hand up to answer the teacher’s question. I think that may be one of the ways that my life has affected me – my confidence.
Lily has got more aggressive now and she starts to pick on me more. But in a way, it sort of makes up for the times she didn’t when we were younger. Because all siblings fight, right?
I sometimes get really frustrated in class and in my head I just want to stand up and shout to everyone “ SHUT THE HELL UP!” At home Lily has quite stressful mornings with a lot of screaming and shouting. When I go to school the students in my class aren’t really that peaceful, they can get really loud and then the teacher is trying to get them to shut up by shouting as well and it’s not working, it does my head in, and recently it really has started to get on my nerves a lot. I think that I’ve sort of, instead of left all my concerns about being a young carer at home, they’ve all sort of followed me to school.
We sometimes struggle when it comes to money- I know everyone does but in a way it’s different for us. I know Mum and Dad don’t like me to worry about things like this, but I do. I also don’t like them worrying either. Dad now has two jobs, he is barely home, he wasn’t home much before he got two jobs either. Mum’s job is ok, she does like it, I think, but she would love to be an air hostess or something like that. All my family think she could do the course to get the job, but mum hasn’t got the time, because if she’s not at work she’s looking after Lily. Mum probably would get a different job if she could, but she can’t because she always needs to be able to dash if Lily needs her at school or something. It upsets me because then she isn’t getting the best out of her life.
Another thing that worries me is that Mum and Dad are going to have to look after Lily for the rest of their lives. I don’t want them to constantly have to worry about her forever and ever. Like I said, I do love Lily, I just do want her to grow up and lead her own life.
If you are, or know someone who is a sibling of an individual with a disability, there is much more information available on www.sibs.org.uk including how to tell a sibling that their brother or his sister has a disability.
