Respite

Posted by Sharon F on 12th January 2024 Additional Needs, Advice & Support, Disabilities

As my social circles have expanded over the years, I have become more conscious when it comes to festive greetings. Instead of wishing people a happy Christmas on an email, I tend to wish them a relaxing break or a good holiday. This is because, particularly when I am talking to people professionally, I don’t know if they celebrate Christmas. I was responding to a parent carer recently with whom I work on a university research project, and started to write ‘I hope you had a relaxing break’ only to realise that of course this would be entirely inappropriate. She has a disabled child. I imagine she is feeling the relief of the holidays coming to an end as much as I am.

It's important to say here that we had the most gorgeous festive season, our little girl had a seizure-free Christmas and Boxing day which was a treat.

There was so much warmth, cosiness and cheekiness.

I loved it. But I am also still in the middle of what feels like a giant exhalation as school has started again. I feel utterly strung out, I have sensory overload from the constant and very loud demands, the grabbing of my hands whatever I was doing, being dragged off the sofa every time I tried to be still. It is not possible to describe the mental, emotional and physical exhaustion this causes. If parent carers are reading this, I don’t need to describe it; they know.

We had been unable to find an enabler this Christmas holiday so, while we had care support at home, we had no respite. There’s a huge difference between care support (which I would say takes the pressure off about 20-30%, depending on the carer’s experience with my child) and respite or enabling which, for the hours my daughter is out of the house, removes 99% of the pressure (I reserve 1% for the anxious phone-watching).

I thought we could manage it.

While we did physically get through it, I am still taking stock of the price we have paid by having no break. I have taken myself off for more than a few walks in the pouring rain to get some respite. During this time I have concluded that it makes absolutely no sense that special schools do not have in-built provision to support students and families over the holidays. I have extensively written on the fact that special schools are far more than simply schools.

They provide essential care and respite, much more aligned to the essential services of a care home or day care centre, where repeated and prolonged shut downs would be unimaginable. The school day is a lifeline for families like mine. Yet it is, at regular intervals through the year, snatched away for weeks on end, just because that’s what schools for non-disabled children do.

It’s nonsense.

My little girl has no understanding of why her school taxi suddenly stops coming, and why she can no longer see her friends. Due to her severe learning disability, I have no way of explaining this to her. She then looks bewildered and confused when it starts up again (while I am close to tears with relief, and sadness at needing school so much). I would love future governments to stop and consider this, and for formal holiday respite to be in place for every special school in the country. Just one or two optional days a week would be life-changing for disabled children and their families and potentially could stop many reaching crisis point during the ‘breaks’.

Some charities do great work on highlighting this issue but I would love to see a clear proposal and lobbying for real change that tackles it properly.

Leaving families with wildly varying resources to recruit, train and manage private enablers (if they have been lucky enough to secure funding in the first place) is unrealistic and unfair. We need a more equitable, predictable and reliable system to remove the pressure. It’s way overdue.