sleepover

PROLOGUE

Rewind by nearly a decade and we are looking around prospective schools for Pip. At the one we decide we love [because the first thing the wonderful head teacher did when we arrived was to crouch down and address Pip directly to welcome him and tell him how lovely it would be if he joined ] the head of primary passes us some information about respite breaks. “You might not want this now but the kids love it and it gives them a much needed change of scene and different experiences.”

The thought totally horrified us: Someone else, looking after Pip, overnight, without us? But he’s so TINY! And no-one understands his needs as well as us. It would be a cruelty! I don’t know what happened to that leaflet.

SUMMER 2016.

After much soul searching we push the button on getting respite because me and Dad are running on empty. To cut a long story short this involves a deal with Social Services whereby you tell them absolutely everything, open yourself up to scrutiny/judgement/loss of privacy* and Pip receives the designation Child in Need; and they get you a respite carer so you don’t throw yourself out of a window. Protracted period of locating a suitable respite carer follows and from 2017 for a very happy two years Pip goes on a weekday sleepover, about once a fortnight, with his matched respite family. The weekday night happens to be the same night as football and netball training for the neurotips so we don’t actually go out and “do” anything, but me and Dad get a break from attending to Pip’s personal needs which we do appreciate.

Me or Dad getting Pip’s overnight bag ready in the morning on respite days is his his cue that he is going on what we call “sleepover”. This means he can get his head around it, which he mostly was able to do, after an initial period of prevaricating. After a while Pip created his own hand sign for sleepover, which is a bit like the sign for “horse” but sideways. We think this is because he sees horses when he is on his sleepover. Clever.

AUTUMN 2019

One morning Pip doesn’t want sleepover. He forcibly unpacks sleepover bag once we’ve packed it and signs “sleepover: finished”. We eventually use misdirection and diversions to get the bag repacked. But within a few weeks Pip is resolutely refusing to go. And so begins the end of respite care.

One morning, when Pip was due to go on a sleepover, I woke him up as per usual.

Me: Wake up Pip!
Pip [signing]: sleepover finished.
Me: OK, sleepover finished. No more sleepover. 

And that’s that.

Sleepover finished.

I should make it clear that his respite family was AMAZING and I doubt that it’s anything to do with them. We don’t understand what it was about. Possibilities are:

• getting to respite involved some undesirable aspect selected from type of transport, transport personnel or route (possibly inconsistent)
• going to respite involved missing out on his usual journey between home and school, which he loves
• he sometimes arrives at school late after respite which means he misses a bit of sensory circuits
• bored of it/can’t be bothered anymore
• lack of iPad when he’s there
• other

Whatever, respite care ends at that point because it’s clearly too much stress and hassle for everyone involved and that is very much Not The Point of Respite. So we find ourselves in the current position of not having respite. Me and Dad realise that we are very lucky not to need to worry about many things in life. Everyone at home is happy and healthy and we can afford what we need to live a contented life. However, providing full-time care for Pip is like walking on a tightrope: Keep your balance and don’t wobble. Eyes front, not down. Everything clenched. Senses super alert. Hope for no unexpected side-winds or some git bouncing on the rope up ahead. Steady does it. The respite breaks are like the little platforms between the end of one tightrope and the beginning of the next. The platforms give you a chance to look back at where you’ve been, feel a sense of accomplishment, and plan how you are going to get to the next platform. So at the moment it just feels like we are wobbling along a never ending tightrope and we are just a bit tired really, and ready to step off the rope.

EPILOGUE

A couple of weeks or so after the end of respite, Pip starts doing the sign for sleepover again, triggering us to trill that “sleepover is finished” with a simultaneous elaborate delivery of the sign for “finished”. This is HILARIOUS to Pip. The game has now developed to the point where we have to get the sleepover bag out and fake wrestle with Pip over it before letting him win and put it away again. In the extended version, we get to the point where we’ve put some pyjamas in it before it gets unpacked again and put away. Let me make it clear, this is a game that Pip instigates and which must be played. A good few times a day. Which is quite good fun if you can see a platform ahead.

*what it feels like, not what is happening in reality. All of the social workers we have ever met seem to do an amazing and very challenging job. My thanks to them.