Lottie's story

Lottie is 22 and has cared for her brother Harvey for 19 years. Watch her story.

Harvey has Angelman syndrome, autism and ADHD. Lottie told us about her life as a young and young adult carer.

I became a carer the moment my brother, Harvey, was born. He has Angelman syndrome, autism and ADHD meaning his development is severely delayed and although he’s 19 years old, he still has the mental age of a nine-month-old baby. At 22, I’m three years older than him, meaning I’ve been a carer for 19 years.

I’ve always found myself acting as a second mother to him. There was never a question as to whether I wanted to look after him, I simply always have wanted to because there are things he can’t do for himself and things my parents can’t do alone. As I’m sure is the same for many young carers, it’s just been a part of growing up and has always been completely normal.

One of my first memories was from when he was diagnosed. I distinctly remember my mum crying in the kitchen and helping my dad to make her a cup of tea. When Harvey was really little, I just remember all he would do was scream, he wasn’t like a regular baby, not doing regular baby things, you could just tell he was different.

A typical day as a young carer for me was waking up when Harvey would wake up and going into the bedroom to do his nappy and getting him ready for the day. Getting him dressed, brushing his teeth, putting on his deodorant, all of that kind of thing, taking him down for breakfast, watching him while we waited for his bus to come and my parents were getting ready.

Harvey is very, very active – and one of my roles was, and still is, to help keep an eye on him. He likes to run the taps in the bathroom and to put his hand in the hot cooker. He’s so strong now and when he’s bored and frustrated he’ll rip radiators from the wall, tear doors from their hinges and pull light fittings down from the ceilings. If he sees a puddle in the park and he’s thirsty he will get down on his hands and knees and drink from it.

He’s also very grabby, he likes to pull hair and rip clothes, and if you’re in the supermarket or any shops you have to keep him directly in the centre of the aisles as he’ll grab whatever he can get his hands on from the shelves, loaves of bread, raw chickens, things out of peoples’ handbags.

Once he grabbed a massive 20 litre tin of emulsion paint off the shelf and it split open and went everywhere – all over him, over the floor and anyone who was passing by. At the time I remember feeling humiliated and like I wanted a hole to swallow me up before anyone I knew from school saw me. Now I’m proud to be seen out and about with my brother, but when you’re young you’re just scared of what people might think.

When I was younger there were always people in and out of our house to see Harvey. Doctors, consultants, carers – I remember being so jealous because none of them were coming to see me, I used to think: ‘When’s my person coming into the house. Who’s going to look after me, who wants to talk to me?’

So once this lady came and she said: ‘I’m here to play with you’ and I was so amazed. It was so fantastically fun for me because she had just come to see me and do crafts with me and take me out and go for walks and play in the park and do things like that. I felt important and cared for and it really boosted my confidence as a child.

When I was younger it was so important to have that kind of support out there for siblings and young carers. It’s so good to reach out to somebody who’s not in your family or a friend, somebody who is a stranger and they’re only there to talk to you. You just see them for that one specific thing and you can offload everything onto them and then you feel so much better.

I definitely think it’s good to go to young carers groups or have your own hobbies and do activities that are just for you. It’s so important sometimes just to get away for an hour or two and do something that you love.

As being a young carer was and still is such a big part of my life, I feel it is important to raise awareness of the importance of looking after young people who have responsibilities to care for others. As part of my artistic practice I have made a sculpture to represent the weight of responsibility that young carers carry at such a young age. It’s a huge red man, about twice the size of a regular person, stuffed with sand to make it almost impossible to lift. It’s soft like a teddy bear and represents looking after someone who’s much bigger and heavier than you are. You are invited to interact with the sculpture and touch and play with it, you can lift it up or put an arm around you, which is surprisingly heavy.

The action of holding the entire weight on your back is a physical metaphor for the backbreaking constant burden that these young people carry around with them every day. The piece however is not intended to be purely negative, there are many pros and cons that come alongside being a carer.

To reflect this, the sculpture is soft and so inviting to touch, if you sit against it and wrap the arms around your shoulders, the weight provides comfort and an almost cocoon like feeling of being safe and loved.

Lottie recently graduated with a First Class Honours in Illustration and Animation.