Dear Sibling Caregivers of a Child With a Disability

Dear young carer,

Let me start this letter by telling you who I am, and to do that I must tell you where I have been. I have a message for you, but I know you won’t believe me until you know I understand you.

• The Mighty’s Caregiving Toolkit

Growing up I was what is known as a young carer. My childhood was different from lots of other children. I had responsibilities that most children don’t have, because I have a brother with autism. Just before I turned 2, my mum came home with a new small little person. Apparently, I didn’t quite understand who he was to me at first, I was just excited and knew it was a baby. As time went on that baby learned and unlearned how to speak, he didn’t play in the same way as the other brother that came after, and he went through a phase of always wanting to be naked. I distinctly remember my parents’ wedding where there was much effort made to keep him clothed! He learned to talk again and spoke in a repetitive way, and sometimes he got angry and would pinch my mum or me if I got too close.

When I started school, people started visiting our house. They came to talk to my mum about my brother and soon I learned a new word to describe the ways in which my brother was different. My brother had autism. I had no clue what autism was or what it meant, all I knew was he was my brother and it was my job to protect him. Kids weren’t always nice about him being different, and neither were their parents sometimes though I didn’t notice it back then.

A few years passed and then I went to see the strange doctors and I learned another word, Asperger’s, though my little mind heard it as “ass burgers” (luckily in England, ass meaning butt isn’t such a common word). I didn’t realize this meant we were the same for some time. It was quite confusing, but I always knew I loved him and he needed to be looked after.

As I became a teenager, I had almost 80 scars from my brother, but that didn’t faze me or change how I felt. Kids didn’t like me much, I was different and I viewed things quite differently. I couldn’t always finish homework, sometimes my brother had meltdowns, other times I was just being lazy or was stressed with problems he was facing at school.

I was lucky enough to find other children like me when I joined a support group called Carers First. I met other young carers and learned more about who I was, how helping my brother had affected me. Up until then, it was just normal, it was life. I met a girl who cared for her mum, and a girl with her own autistic brother with the same name as mine.

I realized more about who I was, and the older I got, the more I could help. I was able to look after him more, which I was quite happy to do most of the time. Sometimes I would pull the teenager thing of wanting to see friends, but I had bigger responsibilities. I had someone else to care for, not just myself. Carers usually get worse grades and tend to struggle in school, but I excelled, to a lot of my teachers’ surprise. I got 15 GCSEs and went to a good university.

When I moved to university was when I really realized what it had meant to have a brother on the autism spectrum. Flatmates didn’t understand why I instantly got stressed and apologized when I dropped anything making a loud noise; I was used to meltdowns following loud sounds. I suddenly had so much free time. I also saw that my flatmates were unsure how to do things I had been doing since I was a small child. They were just learning to take care of themselves, but I had been independent for years. It was then I realized the difficult parts of caring for my brother. I had always just thought about how much I loved him and cared for him, about how I was able to help my parents, but I missed out on a lot too.

I will always want to help and do more for him, but I know now how it changed my life, why there were so many of us at that support group. Sometimes I meet people and they say I seem old, much older than I am. They say when they talk to me I carry weight to me you don’t often see in 20-year-olds. Once I had learned to see how my life was affected, I saw how strong it made me.

I could get university work done twice as fast, I had learned to work with distractions. I already knew how to wash up the dishes, cook for myself, do the washing and budget a food shop by the time I had moved out. I don’t get so angry during arguments with friends over little things; I know what’s important. I have always known who I am; I didn’t always act it and sometimes I tried to hide it or change it, but I have always known. I am strong and can deal with things most adults can’t. Although I am only 20, I have acted as a teacher, a therapist and a parent. There isn’t much that scares me these days; I know how to look after myself and those I love. When a friend has a mental health crisis, I don’t panic, I know what to do.

I will always want to care for my brother. I will care for him in some capacity for the rest of my life, but not because I have to. I don’t believe any young carer should ever feel obligated to do so. Go to university, go traveling for a year or move out and start your own family. Always be true to yourself and know how strong you are.

There are a lot of downsides in growing up a carer, but it makes us who we are. It’s a part of us and we can use those traits in every part of life. Be proud of who you are. It’s hard, harder than most other things, but you will get through it. Whether you are 6, 16, 26 or 36, caring for a sibling is always a special kind of job. One no one else can understand.

I am not writing this for pity, as you will understand better than anyone. I am writing to you to say you are not alone. You have brothers and sisters you have never known who share the same experiences. It’s OK to admit the hardships and the parts of childhood you missed out on. It’s OK to be angry about life forcing us to grow up too early. It’s all right to step away from your caring role as you grow up.

You are more than just a carer, but it is a big part of us and a part that for better or worse shapes who we are. It’s something that is hard to talk about, and there can be times where you are desperate to speak out but don’t have the words, because how can you articulate how this impacted you when you know nothing else? We are more likely to struggle with poor mental health, more likely to fall behind at school, but more likely to manage money better and be able to care for ourselves at young ages.

I can’t tell you how to feel about your own journey, I can only share mine to show you that it is OK. I can hope this letter finds you at a time you need to hear these words. I can tell you a story that might resonate with your own.

So, the reason I am writing to you is this: I want to say well done. Well done for everything you do. I am proud of you as your family should be proud of you. It’s not an obligatory thing, it’s a choice we make. Know I love you, so please love yourself. Be proud of who you are and where you have been. Your story is nothing to be ashamed of. You will never be alone, not for a single day. We are all brothers and sisters and we can care for each other the same way we care for our parents or our siblings with disabilities.

Take pride in who you are.