Category: Uncategorized

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.

for use when buttering anything. ANYTHING.

• 

A few weeks ago Pip and I had a rare Saturday together when the others were busy doing other things. It was during the Christmas break and I was feeling refreshed and invigorated from having spent a lovely couple of weeks with family and friends at home. Pip loves charity donation boxes and particularly the big one in the entrance lobby of the zoology museum in Cambridge. It’s a great glass cabinet filled with a mechanical, articulated, whale and turtle featuring many historical and present day figures from the zoology hall of fame. You pop coins in through a hole (ONE COIN AT A TIME PLEASE) and these roll down a curving brass channel before plopping out into a vortex funnel, down which they languidly swirl before plinking through the plughole and onto a tinkly bell. It’s marvellous and it’s one of Pip’s favourite things to take a quids-worth of coppers and feed them into this worthy receptacle. [I’m super happy with this because importantly it doesn’t involve pocket money going on pointless pieces of plastic or bits of cardboard. You know what I’m talking about.] What I’m leading up to is that I took a unilateral decision that we would Make The Most of the Day™ by visiting the museum with some coins. For a bit of a flair we could go on the Park and Ride bus because that’s fun too. Usefully, I could take back the backup Vans backpack I’d bought in the run up to Christmas as the Vans shop is right there in the nearby shopping centre. Easy.

Car drive to the Park and Ride was very pleasant, uneventful even. Getting close to the Park and Ride some wild gesticulation from Pip communicates that he wants me to stay on the road heading into Cambridge centre, rather than parking up. That’s OK, we can cope with that plot change and secretly I’m happy about it. Arrive at the Grand Arcade car park, park on level 3 [my favourite level: result] and make our way into the shopping centre.

BAD DECISION 1

We went down the stairs rather than taking the lift. FACEPALM!! I forget that Pip hates anything on stairs so he has to stop and pick up the litter on the way down. A squished coffee cup, lid and cardboard sleeve and some wrapper or other. It’s very manky. We head into the shopping centre and manage to get rid of it in the bin but then we have to wash our hands, gross.

After that we are on our way to the museum. There is a fairly direct route, up a mysterious (but importantly clean) back staircase, through a heavy gate and back down some stairs at the side of the museum. Recently though Pip has been boycotting this route in favour of walking around the museum block and going in through the front entrance. That’s fine, but he gets anxious about being rerouted to the shortcut, and in anticipation of this wanted to walk in the middle of the road so that he couldn’t fall victim to being artfully diverted up the mysterious stairs. This is a busy road so I had to use a bit of effort to keep him on the pathway. Part of the pathway was blocked by a deep excavation so we ended up in the road a lot of the time anyway. Pip has little evident sense of road safety so any walk next to a road is a little bit stressy. This was upper-level stressy. But we got to the museum without incident.

Coins all into the hole one by one. He knows what he’s doing, thanks. Other kids wait their turn with their single coins because they know instinctively that Pip is the boss of this machine.

Coins done I insist on a toilet trip. It’s been hours since last wee (him and me!) and Pip doesn’t know where the loo is so it’s useful reconnaissance. We use the disabled loo. No other choice: Pip is 12 so can’t come into the ladies with me and if he did we don’t fit into a single cubicle. He does a wee, I do a wee without him opening the door, we both wash hands. We do not use the hand drier because that would be lunacy. We use my jeans to dry our hands! I go to get the packaged Vans backpack off the hook on the door and that’s when something goes sideways. Pip doesn’t want this. Backpack belongs in the disabled loo and should stay there and he is very determined about this. We have a bit of a mental and physical wrestle on the threshold of the bog in front of a lady and her toddler waiting to come in. It’s embarrassing for me. In the end I shove Pip out of the loo so the poor lady and child can go in. They have to put up with Pip trying to break in to return the backpack and he’s raging. I’m trying to meekly usher him away and distract him/tell him straight that we’re leaving/stop him from breaking into the toilet. He’s banging his head against the toilet door repeatedly and it’s rattling in its frame. The whole 7.65billion population of the entire world is watching us, open mouthed. I get a good ten or so full force clumps from Pip before he very reluctantly is ushered away. Everyone is staring-without-actually-staring and we beat a hasty retreat.

VANS SHOP

Backpack exchange takes a FLIPPIN AGE and while we are waiting Pip prods girls with medium-long brunette hair who have the audacity not to have it in a pony tail. This is his preferred hairstyle for medium-long brunette hair. There are lots of these girls in the Vans shop all of a sudden. I’m really glad to finally see the back of the backpack.

AUTOMATIC DOORS

There is a set and a half of automatic doors between the shops and the car park. They are magnificent. Understandable then that Pip would want to watch them, activate them, admire them. For 20 minutes. Mesmerised. Toddlers doing this is cute and makes passers-by smile. Pubescents doing this is more unusual in my book. After 15 mins I want outta there but there isn’t much you can do about a mesmerised 12 year old sitting in front of some doors. You cannot pick him up or drag them away and they are immune to your pleas because they are fully hypnotised.

BAD DECISION 2

When Pip is back in the room we head back up to the car. I choose the stairs again because they are right by the doors. WHEN WILL I LEARN. Some careless type has allowed large fruity jelly sweets to trail up the stairs. On the plus side they are an incentive for Pip to leave the doors alone but once again he’s picking vile stuff up from the grotty stairs of the car park. I leap up the stairs ahead to pick them up first so he doesn’t have to. Yuk. He focusses on levering up a clod of chewing gum. No bin between the stairs and car so I throw caution to the wind, and the sweets, which go down the middle of the stairwell into the inky blackness of -1. It’s a terrible thing to have done but, in karma terms, neutral, I think, because we picked them up in the first place.

We get in the car and go home. Uneventful.

So really this is a story about my inability to get over What Others Must Be Thinking™. I don’t know why I find this so difficult. What is driving this? Why do I care so much about what people I don’t know are thinking?

*no shopping involved