On your marks, get set…

Image by MonikaP from Pixabay 

When was the last time you relaxed? Really, truly, let it all hang out and drift away? Empty headed, loose limbed, unclasped. With nowhere else to be in body or in mind.

I had this conversation with myself last week and realised I couldn’t remember a time since the birth of our children when this has actually happened.

And yet, even with a pretty complicated household that requires a lot of heavy lifting and creative parenting, I couldn’t put my finger on why?

Why is it that when sleep comes, it brings with it a fistful of things I’ve forgotten to do and an anarchical narrative of chaos? When dreams are supposed to perform our back office mental filing, why are mine more of an apocalyptic helter skelter?

Why is it that even in the narrow windows of downtime, I always feel like I am waiting? That my attention cannot commit wholly to a task, a project, or even a book because at any second it is likely to be needed elsewhere.

I’m pretty sure that even in the pitch-dark sensory detachment of an isolation tank, I’d still have half an ear or an eye open and ready.

Stuck at the start line, expectant for a gun to fire that signals me into action. Sprinting to intercept a meltdown or ambush a silent choke on a mouthful of dinner. Picking up the perpetual baton of moving the day forward for children who can’t or maybe won’t do this for themselves. Seeing the hurdles of the SEND system as they come into focus on the horizon and conceiving of how to scale them, before a fall comes.

I am sure this feeling of being always on, always ready, is not at all unique to mothers and fathers of children who have disabilities or health conditions. Perhaps this is just what happens when you put a little piece of yourselves out into the world?

It’s just that, for us, maybe it’s heightened. The light switch is always turned to full, never dimmed even the slightest.

That meltdown isn’t a tantrum that can simply be ignored in the hope it will run out of oxygen, that phone call to book a brain scan or arrange a wheelchair handover isn’t one that can be sent to answer phone to be dealt with another day, that small sound in the darkness of the night might be nothing, or it might be a seizure.

The question of ‘what if’ is always looming overhead, its intensity pressed down on us by the knowledge that we are constantly under the gaze of armies of public sector workers that keep watch over our lives, circling around us in the name of support.

We know we don’t have to be perfect, but there is judgement, and reporting, and for that I know I don’t want to miss a single thing. We never know whether that circling will bring safety, like dolphins protecting their young, or threat, like vultures, sniffing and gliding in search of prey.

There is no off switch. There are very few moments when it is possible to unclip your spikes from the starting blocks and sit down on the warm grass to enjoy the view.

The only option as I see it right now is to buy a really comfy pair of spikes, and maybe some knee pads, and settle in for the long haul. Right there where we need to be, in the starting blocks. Ready to go when our children or the systems that support them need us to spring into action.

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4 Comments

  1. Kerry Fender 05/02/2020 / 5:24 pm

    I think you’ve hit the nail on the head here.
    I’m very fortunate that Freddie’s needs mean I don’t have to be ‘on’ all the time as much as some other parents, I get off relatively lightly, but I always have to have a plan, be thinking one step ahead – if he does that, I’ll have to do this, if he won’t do this, I’ll do that, etc, so life isn’t a constant battle, and I wonder if that’s why I get tired so easily. I’m also lucky that his pattern of needs means I can get away with not engaging with ‘the system’ all that much. I think the system is one of the big causes of stress for SEND parents, but unfortunately one that few are able to get away from.

    • KatherineKowalski
      Author
      06/02/2020 / 9:49 am

      I 100% agree! It’s not (usually) our children that cause us stress, it’s the system. And we always have to anticipate ‘what next’. Exhausting!

  2. Lizzie 05/02/2020 / 9:57 pm

    I can relate to so much of this. SEND parents are also scrutinised in a way that other parents aren’t – and from so many different professionals, it can be totally exhausting. Last year I managed to book in a few child-free weekends away, which massively helped. I intend to do the same this year if I can. When I’m not with the kids and I know they are in safe hands then I’m happy to relax for a couple of days!

    • KatherineKowalski
      Author
      06/02/2020 / 9:51 am

      Yes, the scrutiny is what absolutely kills me and I didn’t realise it was happening until too late. It sort of crept up, and I trusted people, and now they’re all in our lives and I wish to god they weren’t. We had our fingers burned with a bad-egg disabled children’s social worker towards the end of last year and since then I haven’t really felt like letting anyone else in to our lives, but I know it’s coming!

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