“I DEAL with each day as it comes and try not to worry about it,” says Ciaran Hand.
“I just wake up each morning and get on with it.”
The 11-year-old’s outlook is wise beyond his years – but then he has had to grow up faster than most boys his age.
Two years ago his father Jason, 34, was diagnosed with motor neurone disease and the degenerative condition has gradually robbed him of movement and speech.
In that time, Ciaran has not only had to come to terms with the gravity of his father’s illness but has also taken on responsibility for caring for him, helping his mother Michelle, 33, and looking after his brother Ethan, eight.
“At first he was just falling over a lot,” recalls the budding young actor.
“Me and Ethan were really scared about him because one day he fell over and banged his head on the windowsill.
“He banged his nose and there was blood everywhere.
“About two months after we found out what he’d got.
“It wasn’t very long after that that he couldn’t speak. It has gone quite quickly.”
As his condition has worsened, Ciaran has had to help his father to communicate by using a sheet printed with the letters of the alphabet.
“We point at it and if he blinks that’s the letter he wants to use,” says Ciaran.
“Me and my mum, we’ve learned how to understand him because he can grunt and you can kind of make out words.
“But when he asks me for something I can’t really understand, I just get really frustrated.”
Ciaran’s main caring duties are helping to keep his father comfortable.
“I do stuff like lift his legs and cross them over and put a neck cushion behind him and move his arms, and I change the TV for him” he says.
“He’s got a toilet chair and I help my uncle and my mum pick him up and push the chair under.”
He also carries out household chores such as washing up to free up his mother to care for her husband.
“My mum does a lot for him so I do a lot of stuff that my mum would do,” says Ciaran.
“I’m alright about it because I know I’m helping my dad but I do get agitated. Sometimes I get upset and want to shout.”
As a big brother, Ciaran also worries about how Ethan is coping with their father’s illness.
“When he’s upset I try and help him but I don’t think he understands,” he says.
“When he’s upset about it he says he’s upset about something else. He doesn’t let people help him.”
Unlike many young carers, who often report that their responsibilities at home cause their education to suffer, Ciaran is doing well at school, where he says his teachers and friends have been supportive.
“Some of my friends know and some of them don’t,” he says.
“At first I started getting upset at school so more people started asking, so more people knew.
“After a while I’ve got more used to it so I don’t get as upset but I still get upset sometimes.”
But outside school, his father’s condition means Ciaran no longer gets to see his friends as much as he would like.
“Because of my dad we were going to move house, but we had to find somewhere where we could build an extension with a toilet downstairs so he can get to it,” he says.
“The only place we could find is quite far away from my friends’ houses so when they are larking about with each other I can’t.
“I can only go once or twice a week or so. My mum finds it hard to get me places.”
Now he and Ethan visit Barnardo’s Hull Young Carers twice a week where they get one-to-one support and a break from their responsibilities.
He has also been able to spend time with other young carers on days out and weekends away such as a recent trip to Grinton Lodge activity centre in the Dales.
“It was good because I knew they were all dealing with the same as me,” he says. “It just gets me away from the house a bit.”
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