When you become a ‘special needs sibling’, you have to grow up – fast. All of a sudden, there is a new person in your home that needs a lot of extra help and care which naturally means that you have to start doing a lot of things for yourself. In both the best and worst ways, life revolves around the needs and routine of your sibling and ‘getting on with it’ becomes second nature.
The reality of being a ‘special needs sibling’ starts with the little things that you notice. Not being able to invite your friends over for dinner after school, having every single thing you own being broken or chewed and missing out on certain things because your sibling can’t cope with loud noises or big crowds. As time passes, all the little things become so normal that you don’t even notice them anymore and you realise it doesn’t matter anyway because you get to have your sibling in your life. You get to cheer them on when they achieve the tiniest of things – like putting their coat on or having a ‘dry night’. You celebrate the normal everyday events massively and become so grateful for what you can do yourself.
Growing older as a ‘special needs sibling’ has brought new challenges. The days of worrying about what people think of your sibling are well and truly gone and your true friends all understand why you don’t invite them round or why you don’t go out as often. But growing older brings a scarier reality. Over the years, you have listened to thousands of conversations between your parents and all the people that have an input to your siblings life and suddenly, you are involved in the conversations and you become a part of the decision making process. You have to realise there may come a day where you become the one solely responsible for your sibling and it is terrifying. You have to take an active interest into every aspect of your siblings life from their finances to their medication. Whilst you watch other people your age make decisions on travelling the world or what city to go for a night out in next, you are helping decide where your sibling will live, how they will be cared for and how you can help care for them. You start to notice the effect the years of bringing up your sibling has had on your parents and how they, along with you, constantly face the reality that life will never be ‘normal’.
Personally, I wouldn’t change being a ‘special needs sibling’ for anything – I class myself and my brother as young carers and we are proud of it. Neither of us could imagine a world without Connie. Growing up, I always wondered what it must be like to wake up in a house where you all slept through the night, where all the children went to the same school together and you helped your younger siblings with their homework whilst you sat and watched TV. Now, I don’t think I would want to know – I am quite happy to be woken up by Connie climbing into my bed, to sing nursery rhymes with her whilst I get her dressed and to help her go to the toilet. Being a ‘special needs sibling’ is hard work – you can often feel forgotten about or ignored, you can feel like no one understands and you can feel like the world is on your shoulders – but it is SO worth it!