Families like ours could benefit so much from respite in the school holidays
Catherine lives in Gainsborough, Lincolnshire, with her partner and her two sons, Marshall, 12, and Reuben, 9. Marshall has a diagnosis of autism and global developmental delay.
Being a parent carer is challenging, rewarding and wonderful all in one.
There is never a dull moment in our house. It’s full of laughter and emotions. On some days the challenges can be harder, but we do our best.
Summer holidays are a difficult time for our family
On a typical day, it can feel a bit like a military operation making sure things run smoothly in our house!
There’s all the usual demands of taking care of two children, plus lots of extra considerations, like making sure Marshall always has ear defenders and sunglasses to help with his sensory difficulties.
We have to make sure our routine is always the same, and try to keep everything running smoothly, so that Marshall doesn’t become overwhelmed.
School holidays are difficult for our family, particularly the summer.
Six weeks of disrupted routines is hard for the kids, and it’s hard to juggle work with accessing activities that cater for our children’s needs.
Our local authority has provided us with a Max Card, which gives us discounts to some activity venues, but there aren’t many places local to us where we can use it.
Accessing places during the school holidays is often expensive, and if it’s busy it can be overwhelming for Marshall, so we don’t stay for long.
It’s during this time that we’d really benefit from respite care, giving us the ability to have a short break from caring. But as parent carers, we don’t receive respite care in our area.
The short breaks offered in our area aren’t enough
In our area, we’re offered short breaks of a couple of hours. This is welcome, but it’s not enough time to actually allow a break.
We’d have to travel there and back to drop the kids off, meaning there’s very little time for an actual rest.
Registering with the service so that we can access these short breaks has also been a really time-consuming process, due to the local authority having staffing issues.
Once you’re registered, it’s difficult to book onto things, as the demand is so high, they are fully booked months in advance.
Even a little respite during this time would allow parents like us to refocus and have a small break. It would stop the cycle of exhaustion and allow us to refocus on priorities.
In an ideal world, there would be local groups in our town that could support people with disabilities. This way, disabled people would be included more, and others would have an opportunity to learn about their experiences.
Siblings need respite too
I think siblings should also have access to activities and respite, along with young carers.
Reuben is such a wonderful brother. He often makes changes to accommodate Marshall. For example, he often needs to adapt around Marshall’s needs when we go out as a family. It can sometimes feel like Reuben has missed out.
Our local authority doesn’t offer any activities or respite for siblings. That’s why we’re so grateful for the opportunities offered by Sense.
Sense’s siblings service allows Reuben to experience new things, outside of the home, without all the extra stress of the whole family having to leave and go out.
He always looks forward to the gaming session to play Fall Guys with his friends, and the book club. Without this project, Reuben wouldn’t have access to these things locally.
All parent carers deserve support and community
Being a parent carer has its difficulties, but a friend once told me, “You’ll find your tribe”.
They were right – when I found others in the same position as me, I felt so supported and understood.
We access our local parent forum groups, where we’ve met other parents of children with additional needs. While it isn’t a complete break, it’s been very comforting and useful.
It’s been a huge help to me as a parent carer. Having more opportunities for this kind of support would be invaluable.
I love caring for Marshall. But having a break from caring allows you to refocus on just being you, and also makes everyone much happier and less stressed. Everybody needs that sometimes.
Everybody deserves a break
Being able to take a break from caring is essential, but many people struggle to access the respite they’re entitled to.
Will you add your name and help give carers the break they need?