It’s Carers Week in the UK in June. When most people think about being a carer, I imagine they envisage looking after an elderly relative, maybe a spouse or elderly parent, I certainly would have before having a disabled child. As a parent of a disabled child it took a while for me to realise I was a ‘carer’ and that my other child was a ‘young carer’.
This family carer role is so much more complex than the typical parenting role. It includes a hefty serving of admin. Not admin of the car insurance variety, this turbo-charged admin can be very painful, such as listing all the ways in which your child and you struggle, to strangers who will then discuss your situation.
It can be pressurised, such as ensuing your child’s care team get paid on time, their expenses are done and you have paid their tax to HMRC. That’s without even getting started on the day to day care, whatever that looks like for each family with a disabled child / children. Special diets, seizures, medical equipment, behavioural support, emotional regulation, medications, therapies, surgery recovery, continence care.
There is relatively little respite available, in my experience.
Even if there was more, I am not sure it would touch the sides for any families looking after a disabled child. In fact, sometimes I don’t want my child taken off to respite, I’d rather have her here with us but not have to worry about the cooking or cleaning.
Can you imagine how amazing it would be if cleaning services were provided to every family with a child with a disability and, let’s say twice a week a healthy home cooked meal turned up. While I’m dreaming, maybe every family with a disabled child would be given a virtual PA to handle all of the day to day admin, order meds and book appointments. Oh, and the cleaner would also do the laundry and clean the windows. This sounds like, and is, a fantasy. However it does get me thinking about how families with disabled children could be better supported. Maybe it is about more than respite.
For young carers, the offer seems to be some trips out now and then.
While I am grateful this is on offer and I am sure many benefit, my 12 year old daughter, quite understandably, will not attend as she does not know anyone. I get it. It’s like me voluntarily going to a networking event. No thanks. How could this offer be better? Maybe counselling for young people, or a small budget for them to spend on a wellbeing activity of their choice, with their own friends. Again, there’s room for thinking outside of the box here (and outside of the budget I am sure, but we have to have goals).
I’d love to hear other ideas of how families could be better cared for. Right now, I find we are all too often ‘lumped in’ with all other carers, when each type of caring role is unique. Being a parent carer is a role that anyone who has not done it can’t begin to imagine.