Skip to main content

Amy – “I was a young carer for my disabled sister”

I was 6 years old and my sister, Sophie, was nearly 5 years old, when Kathryn was born. Kathryn was a really easy baby, but when it came to her two year check – things weren’t quite right. Physically she was fine, but she wasn’t meeting milestones mentally and didn’t have any language. That has never changed. She has never learned to speak or understand what people say. She’s like an 18 month old.

There was a lot of emphasis on having therapy and trying to teach her to speak before we realised “This is Kathryn”. We needed to change our expectations and understand that she wasn’t going to be able to speak.

I was a young carer

Sophie and I always helped out with Kathryn when she was a baby, and we would have done this whether she’d had disabilities or not. We changed her nappies and looked after her. Our parents both had busy jobs so we were unpaid babysitters when they needed us. You just end up in these roles. People talk about young carers doing too much – but who else is going to do it?

My parents tried to protect me and Sophie from Kathryn’s disability by glossing over it. They didn’t really tell us anything about it. So as children, we filled in the gaps ourselves with all sorts of nonsense. None of it was true! We later found out there was a genetic cause for Kathryn’s disabilities and it really helped me to know this. It helped to make sense of things.

Sophie and I adapted and coped well with day-to-day life with Kathryn. We didn’t really know any different. Looking back, I think Sophie and I coped better because we had each other. We were in our teens by the time Kathryn was in respite at weekends and it was nice not to change nappies so much. My parents said that when Kathryn went into respite at weekends, they would be able to spend more time with us. In reality, that didn’t happen. Instead, they watched rubbish TV and ate takeaways! I’m a parent myself now, and I recognise that they needed this. They were exhausted. It was still disappointing that Sophie and I didn’t have quality time with them though.

I wish I that Sibs had been around when I was a kid! I would have loved a sibling group. When you meet another sibling, there’s so much you don’t have to explain about your life. There must have been other siblings at Kathryn’s school. There seemed to be meet ups for the parents, but nothing for the siblings.

Being a sibling has been difficult at times

Kathryn was quite aggressive and difficult to manage when she was young. She’d have tantrums, strip all of her clothes off…she would run off in car parks – the amount of near misses she had with cars! When Kathryn was 12 and heading towards puberty, she had to come off her epilepsy medication. Her behaviour calmed right down, and we realised it was the medication that had been causing it.

My mum was really difficult at that time too. A lot of shouting and screaming. Occasionally throwing things. It wasn’t very nice. I understand what she was going through – I have children of my own now, I know how hard it can be. Mum worked full time and had three children (one who had severe learning disabilities). Trying to manage all that must have been tough – no wonder she snapped. It was difficult for us all.

My parents see me as ‘the competent one’

I often feel excluded from my family. It’s like my parents see themselves and Kathryn as a unit and see me separately. Like I am the competent one that doesn’t need care, doesn’t have questions and doesn’t have needs. But I do. I’ve never felt like I have the same support from my parents as my peers have from theirs. I think my parents just think I can “get on with it”.

My parents don’t include me in discussions about Kathryn and don’t tell me when things change with her. When I ask, my comments are brushed aside. Sophie asked my parents to have Kathryn tested to see if her disabilities had a genetic cause. A genetic cause was found and my parents told Sophie over social media. That’s how I found out – I saw the posts. They didn’t call me to tell me that I could be a carrier. They didn’t think to tell me.

My friends’ parents help them with their children. My parents don’t help with their grandchildren very much at all – they’re not as interested as other people’s seem to be. My parents see me as having the easy life and I resent this. It’s never easy having two young children and working full-time.

I remember one night when my husband was away with work, my toddler and I were up all night with norovirus. It was the worst night of my life. I called my parents at 7am and asked for help. They said no and they weren’t sympathetic. My friends couldn’t quite believe this. I think from then I got a very clear message from my parents that I was on my own.

It’s hard though. Even in my 30s, I think I’m still trying to impress my parents and gain more of their attention.

Being a sibling has shaped me positively as a person

Being a sibling has shaped my career, shaped me as a parent and shaped me as a person.

As a teenager I did some work experience at Kathryn’s school and loved it. It went from there, and now I’m a special needs teacher. It’s interesting how I just ended up in it, but being a sibling has made me better at my job. I have a better level of insight into the needs of people with disabilities.

Being a sibling makes you a good parent too. I was all set for the planning, the nappies, the organisation – it’s second nature. I know about these things because I grew up with Kathryn. When my first child was born, I kept a very close eye on his development. I felt immense relief when he started to talk – because Kathryn never did.

All names have been changed.

Would you like to help other siblings by sharing your own story? Please get in touch.