“You get resentful as you see other families go out so easily”

As summer arrives, families raising disabled or seriously ill children are faced with a lack of accessible activities and support, leaving them feeling overwhelmed and exhausted.

Families tell us that finding a safe and inclusive activity for their children can be one of the biggest barriers to enjoying the summer, with 61% of parents saying mainstream providers are unwilling to make suitable adaptations to make sure their child can take part.

Our Summer for everyone campaign is raising awareness, as well as much needed funds, to support families with grants that can transform summer – for things like outdoor play equipment to give a seriously ill child a safe space to play, and digital devices that offer entertainment and connection for a disabled child, as well as a much needed break for parent/carers.

Jess’s story

Jess tells us how summer looks at home with her sons, Mason, Archie and Arthur, and how grants from Family Fund relieve stress and bring joy for the whole family.

Mason, 13, has cerebral palsy and a learning disability. He can’t sit unaided and is nonverbal. Day to day, Mason requires full time support from an adult.

Jess tell us, “for the first eight years of Mason’s life, it was very full on. We had a lot of appointments – physio, dietitian, orthopaedics and many more. When that world is new to you, it is a lot to take in. I don’t think there was a week that went by where there wasn’t an appointment for Mason.” 

Archie, 11, was diagnosed with autism when he was three. Jess says, “we have had a journey with him as well. He is quite high functioning, he likes a routine and to know what is going on. With the planning for Mason, that prepares Archie. He is very regimented so if we go somewhere and have to cut it short due to access needs for Mason, Archie can get dysregulated.”

Recently returning to work part time at a local special needs school, Jess spends summer as a full time carer, juggling timings and plans to best support all three boys.

“I find the biggest barrier in the summer holidays is finding an activity that we can all do together as a family, safely.”

“With Mason in a wheelchair, it can be more difficult to do activities the other two boys want to do, like go to the park. Mason can’t physically go on a swing and be pushed or join in. We are constantly pulled between two things. We usually go for a walk first with Mason then his brothers can play afterwards. Mason can get impatient so it’s usually that I have to go back.”

“We can’t do a spontaneous day out. We have to do the research with accessibility.”

“I have to think about parking: do they have enough disabled parking places? We have a vehicle with a ramp at the back so we need the space to get him out. We have to think about a lift instead of steps. Changing facilities is a big one – we need a changing place where there is a hoist and a bed to change him on. Even down to eating, he eats orally but he has to have pureed food.”

“I have to constantly plan ahead. You end up in a bubble at home as going out is very hard.” 

“You do get very isolated and resentful as you see other families go out so easily. You think ‘I’d love to be able to jump in the car and go out spontaneously’. From a parenting point of view, you get guilt for the other siblings.” 

“We plan days out but we do one a week at max because I can’t do any more physically, mentally and financially too – more than ever it is a financial burden.”  

How Family Fund have helped

Jess says, “when we apply for Family Fund we apply for things they we either really need in the house like a washing machine which is invaluable for us, if it’s needed at the time. Or we focus on days out that we can enjoy as a family in the summer months. That relieves the financial burden on us and it takes the thinking out of it as you know breaks are going to be accessible.” 

“Our most recent grant was a dishwasher to replace ours that broke. A dishwasher saves time for me. Especially in summer, we find ourselves falling behind on daily tasks around the home – even showering in the morning, I have to get up extra early to fit all things in before Mason gets up.”

“Once he goes to bed, I have to eat and get all the jobs done that didn’t get done in the day. It’s great to throw everything in there, set it off and not think about it.” 

“We have also benefited from days out including trips to Peppa Pig World and a LEGO Land break which was really nice.” 

You can help more children like Mason experience the joy of summer

Whether you’re able to donate, hold a summer fundraiser or share our campaign, every action you take helps us to give families the support they deserve this summer.

Would you like to share your family story?

If you’ve been supported by Family Fund and would like to share your story, we’d love to hear from you.