By Salena Begley, MBE, Family Fund’s Partnerships Manager, Scotland

Most of us look forward to getting away from it all for a few days over the summer. For parents whose children are disabled or have a serious health condition, this might be the first break they’ve had from being a full-time carer in a long time. One recent survey of carers in Scotland found that 22% hadn’t had even one day away from caring in five years.

As well as parent carers, the siblings of disabled children are more likely to help take care of their brothers or sisters, whilst also being less likely to receive the same amount of attention as siblings of non-disabled children, so a break signifies something especially important for them.

Family Fund provides grants to families on low incomes raising seriously ill or disabled children, and around a quarter of the grants we provide are for support towards a family holiday.

Beyond the costs, the amount of time and energy that families take to plan these special breaks with their children cannot be underestimated. Ensuring that the break meets the needs of a disabled child, as well as those of other family members, can be tricky to say the least. Planning for the unexpected takes on greater significance when the opportunity for a break is scarce or when a child’s health is vulnerable.

For children with complex health needs, this could range from making sure that accommodation has the necessary facilities, such as a refrigerator to store medication or a wet room for accessible showering, to hiring equipment such as a specialist bed, hoist or a portable oxygen tank. Are there Changing Places toilets for those for who standard accessible facilities are inadequate? Is the destination near enough to a hospital, just in case?

If the child has a condition like autism, Tourette’s or a mental health condition, families might prefer somewhere where hotel staff have relevant training or tailored activities on offer. Can they be flexible on things like mealtimes, in case a busy restaurant area causes sensory overload?

Of course, it’s all worth it in the end. Imagine the sense of freedom and relief that a child with a condition like autism experiences in a quiet and tranquil place, where they can play uninterrupted in the sand for hours. Children often have new experiences and learn new skills on holiday. For families with children with life-limiting conditions, memories made together on holiday take on an especially poignant significance.

The world is changing for families with disabled and seriously ill children. The first wheelchair accessible Water Park recently opened in Texas. Websites like Euan’s Guide are popping up - acting as hubs for people seeking to access information on anything from hotels to festivals.

The last word, of course, should come from families, so I wanted to share these messages from parents which beautifully sum up what their holiday meant to them.

Jenna, “Last week we went on a two day break to Legoland. This was the first time we have ever gone anywhere as a family of four and it was the best experience of our lives so far. My two little boys had genuine (rare) smiles on their faces and I couldn't wish for more. I want to thank Family Fund from the bottom of our hearts.”

Hayley, “Thank you Family Fund for your help towards a family holiday this year. Ashton is nine and has a diagnosis of Autism Spectrum Disorder, Sensory Processing Disorder, Spina Bifida Occulta and bowel and bladder issues. We booked our holiday at Haven Riviera sands in Cornwall. Ashton and his brothers had an amazing time there and Ashton was VERY happy and comfortable there. It isn't a massive park, which suits us due to Ashton’s needs, and staff were really good with him, taking their time to listen to him chatting away about his computers that he has an obsession about.”

Rebecca, “This last year or so has been exceptionally hard, not only because of our unique set of circumstances, but due to the death of my mother, who was very close to me, my husband and our children. Being a young special needs mum of two, it took much adjustment.

“I knew we all needed to get away, but we couldn’t really afford it. I applied to Family Fund and I was moved to tears when we were awarded the much needed break.

“We were given vouchers to stay full board, so had absolutely no cooking to do. What a treat! The food court was amazing for my tube fed son, he had a taste or a lick of so many items and tried a few bits, which was a big moment. All the staff were really helpful and made us feel so welcome.

“I can’t even put into words what this has meant to us, to have a breather and a rest. Thank you from the bottom of my heart for giving me and my family time away from everything we face at home, to have fun, to see the boys smiling and laughing, and at times even forget that we are different to anyone else.”