Background

Benjamin is eight years old and lives in Warrington with dad, Alan, mum, Rachel, and his older brother.

Alan explains that Benjamin has cerebral palsy. “He has right sided hemiplegia, but you know he is such a happy lad.”

“He doesn’t understand tomorrow or yesterday, he lives in the moment, which is why he is so happy all the time and you know he loves to run around. He can kick a football harder than anyone I know.”

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Benjamin’s condition              

Alan says that Benjamin’s condition came as a result of a traumatic birth. “After he was born he was put into an oxygen chamber and was fitting for the next six hours. Then we were transferred to Liverpool Women’s Hospital where they reduced his core temperature to give him hypothermia which stops the brain cells dying.”

Benjamin’s start to life has left a substantial impact, which affects everything from his movement, to speech and vision. 

“He has quadriplegia, mainly on his right-side, he had gross motor movements in his left hand. On his right side his hand is smaller and closed, we say that there is an Angel’s kiss inside. We made up a poem that me and Benjamin say, and when we do it, he will open up his hand for us.

“He has microcephaly on one side because of the brain damage as well as visual impairment so if you approach him from the right-hand side, he won’t be able to see you, and he can’t see below as well. He doesn’t have depth perception so everything is flat, so we have little orange lines around the house where the steps are or on the banisters.

“We used Makaton when he was younger. His speech can seem lazy and some people can’t understand him, but because we talk to him all the time, we understand him.”

Alan adds that people respond to Benjamin differently, which can be emotional. “It does hurt me sometimes, in summertime it’s the worst. People will look at him funny or in the past parents have pulled their kids away from him, which is heart-breaking. I wish they would just come over and ask. But at the end of the day Benjamin is all that matters.”

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Impact on the family

Benjamin’s condition from birth meant that he needed his parents as full time carers. Alan explains, “Unfortunately, because of Ben’s condition my partner Rach had to give up work and I had to change my job so I could look after him when he gets home from school. I used to be a chef in a care home for disabled people and Rach was a carer for disabled people, then we had our own little star.”

Now that Benjamin is older, Alan has been able to start working more while he is at school. “I’m a maintenance man for a local homeless shelter and it’s so rewarding. It’s a job where I can put my all on for six hours and it takes my mind off Benjamin for a little while, which I know sounds horrible, bit everyone needs a break sometimes.”

However, outside of those hours, Alan and Rachel still need to care for Benjamin. Alan describes their routine as “regimented, everything is a routine from the moment he wakes up. Brushes teeth, has to have breaks before he can eat, we have Amazon Alexa’s throughout the house with set timers going off all the time. If anything changes in the routine that’s it, you could lose the rest of the day because he can’t handle it.”

Alan also has to understand that Benjamin’s behaviour is a result of his condition, even when it may be difficult. “I cut his hair the other day and he screams and shouts and bites and punches me and all I can say is ‘I love you’ and he will say ‘I love you too but don’t cut my hair’ so little things like that.”

 

Lockdown and coronavirus

Benjamin is very energetic, so would usually attend lots of sport groups in his local area. “We used to go to the Cerebral Palsy Football Club and I would take him to Manchester Swimming Centre through one of their Swimming Schemes, we used to go trampolining in Warrington, but everything has been put on hold. But we are lucky we have a park two doors away and I have set him up a football pitch in the garden.”

Fortunately, Alan explains that home-schooling was manageable. “He goes to a special school and had to home school for the first five to six weeks, they would set daily tasks for him like making a dream catcher, so the house is full of stuff he has made. We stuck to that same routine that he knows.”

But one of the biggest differences the family faced this year was not being able to have a break together. “We have really missed going on holiday this year. On holiday you are not a family with a disabled child, you are a family. It’s totally different, you know. You haven’t got the regimented routines, we were free.”

 

How we helped

“We have had support from Family Fund ever since Ben was born, as we were told about it six months after he was born.

“The first time we used it was to get sensory toys from Learning Space, which was brilliant. I didn’t realise how much you could get with the £200 contribution, he got loads. We still buy stuff from them now.

“Every year since we have had family break grants. We went to Devon, Cornwall, we even went to Monkey World one year which was brilliant.

“This year we decided to get him a Nintendo Switch, he can use it with one hand and we play two games of FIFA together every night. We are both Wolverhampton Wanderer’s fans. Sunday to Saturday he will play it on the telly for two hours and then Saturday he will play on it most of the day.”

How it made a difference

“It has really helped his fine motor skills, so when we are playing football its pass or shoot and he has to use different buttons which get his fingers moving, which is amazing. It’s just a Switch but for him it means he’s learning through play.”

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Benjamin's story is part of Family Fund's #InTheirShoes appeal. To find out more and donate, click here.