What it’s like to be a young carer for a sibling with learning difficulties

Those who have younger siblings know that they can be your first taste of responsibility in the world, from holding their hand down the road to making sure they don’t swing themselves into oblivion at the park.

For many of us, it can be hard to imagine a whole load more responsibility than this at such a young age.

From the age of seven onwards, my friend Chloe was a young carer for her sister, Sophie. Sophie suffers from severe learning disabilities and autistic tendencies. I spoke to Chloe about her experience growing up as a young carer.

What’s your earliest memory of Sophie?

In our first house, when I was about seven, she’d just learnt to roll over and that was the only way she could get around for a while. The memory is still hazy but I can remember laughing because it was the first time she’d done it. She seemed to enjoy it, she was laughing a lot too.

At what points did your parents realise she might have a learning difficulty?

My parents noticed that she hadn’t learnt to crawl by the right age and she took a really long time to learn to sit up. When a baby is born, they learn things at very specific weeks of their life usually, and she kept missing the targets. The doctors didn’t know what was wrong, apart from that she was missing part of a gene. There’s still no real diagnosis for her other than that she has learning disabilities and autistic tendencies.

Later on in life what kind of things did she struggle with?

At school her social skills were really poor. She’d talk at people and couldn’t hold a proper conversation because she couldn’t understand if people were not wanting to talk, she could only understand really basic emotions. She couldn’t read or write either so she couldn’t do any school work.

She also stamps a lot. We thought it was a little idiosyncrasy of hers, but we looked into it and found that people with disabilities like Sophie’s feel things in a different way. She stamps on the floor to reassure herself that the floor is actually there.

Tell me about your role as a young carer

I’d do a lot of activities with her. She likes sticking bits of paper together, tissue paper, newspaper – any kind of paper. At Christmas she’s more interested in the wrapping paper than the present inside. When she was younger she wasn’t able to use the toilet by herself so obviously she needed a hand with that.

I couldn’t have people round our house late at night because she was the room directly below me and couldn’t put up with noise, and sometimes she’d wake up at 1am and cry. She needs a lot of structure in her life which is part of her having autistic tendencies. If she isn’t put to bed on time everything kind of goes to shit. She loves days out, although if she gets tired, then that’s the day done and we have to take her home. I used to take her to feed the ducks a lot, that’s one of her favourite things to do.

Sometimes it was difficult because if she had a fit and started shouting I couldn’t do anything to stop her. She’s also a lot taller than me so it was difficult to hold her back from a lot of things if she saw something she wanted.

Did you have any external support at all?

Sophie had a speech therapist for a little while when she was around four. We don’t get any help apart from when she goes to school because the school provides support for disabled students, but we didn’t get any help at home. It’s strange because if we’d lived a mile down the road we’d get more support from the council. It’s different in every county because of funding.

I had a young carer support group at school but I didn’t want to go to it. It was too depressing to sit around when others were in a worse situation than me. I never felt like I even had much of a carer role because I’d just adapted to it from such a young age.

Having been a young carer for most of your life, it must be difficult to imagine things any other way. How do you look at other siblings’ relationships?

They look more like friendships. I realise now that I was looking after her more than I was spending time with her. For example, if my mum was upstairs and Sophie was downstairs, I’d have to go downstairs to look after her. When I look at other people and their siblings, they can do things together, but they can also do things separately and by themselves. With her, you know exactly what she’s been doing because she’s always had to have someone with her.

The comparison is really hard because she is my only sibling. I was a bit jealous of my friends who had older siblings, because they seemed to be allowed a little bit more freedom. My mum was really protective of us. Sometimes it’s still a bit tricky when I’m at home because I have to plan my day around looking after Sophie if my mum goes out.

What would you say the relationship between you and your sister is like?

I guess like a carer. I never noticed until I was older that I was kind of looking after her, but I don’t really think of it like that because that’s just the way it is and has always been. She has to ask questions all the time because she doesn’t like not knowing what’s going on, like “what are you doing?” or “who are you texting?” She can ask me these up to 100 times a day.

If you could say one thing to her to her right now, what would it be?

I’d just want her to understand how much I really care about her.