Monday, 30 March 2020

Coronaclip


Oh, I cannot remember the last time I had so much fun.

I couldn’t wait any longer. No matter that we’ve only been in lockdown a week. 

My excuse is, his hair was in desperate need of a cut anyway. The truth is, I just wanted to be let loose on his head, armed only with really cheap clippers, blunt kitchen scissors, the faint memory of a cursory glance at a YouTube 'how to' video, and above all else, ineptitude, sheer ineptitude.

Laughing uncontrollably whilst wielding clippers is not necessarily recommended. It left a less-than-even finish, and minor cuts to three of the knuckles on my left hand.

We all decided the first attempt to comply with his request to ‘please keep it long on top’ was a triumph, but only if being judged in a Jim Carey in Dumb and Dumber lookeelikee competition.

Despite a day’s worth of ‘It’s fine, no, really, it’s not as bad I as thought it would be,’ protestations from him, I told my boy we had to salvage his dignity (ha! a total lie) and ‘even things up’.

He now looks an extra from the opening scene from Full Metal Jacket.

“I’m baldy. I didn’t know you were going to do it like that!” he beseeched. 

I feel alive, so alive.



Video is Johnny Wright - Hello Vietnam, from Full Metal Jacket

Sunday, 29 March 2020

Pandemonium

Daily yard exercise, supervised by the dog
Lockdown Week One is nearly over.

My cellmates and I haven’t shivved eachother, although the hierarchy of our isolation wing has been cast into doubt. I think the dog is the Daddy now.

There have been issues. 11-year-old Inmate 1 has slipped on the Coronavirus Home Learning Enthusiasm Scale from ‘slightly keen’ to ‘downright resentful'.

Twenty-one-year-old Inmate 2 (a member of the feared PWS gang, easily recognisable by her distinctive ‘pug in a donut’ tattoo), has added to her repertoire of pandemic-inspired perseveration with new worries added to her ever-increasing list. Top of the current pops is TV listings (a favourite at the best of times, but more pressing now with the prospect of CHANGES TO THE SCHEDULE. We have spent several hours discussing how soaps are made in advance, so will contunue to be aired for some time, especially if they eke out the episodes they have in the can. “But WHEN will Eastenders run out?” my girl pleaded, semi-hysterically, over and over, before finishing with the admission: “I don’t even watch it, Mum.”

The difference in my two fellow incarcerees’ ages and skills has proved a stumbling block. Both need prompting and supervision, which proved difficult when their dad was working for most of the week, leaving me ostensibly in charge on my own (single parents, I bloody salute you, I really do).

I tried to think of jobs the little lags could do for me which can be framed as ‘life skills lessons’. So they cleaned my car, did some washing and drying up, and helped sort out the crap piled up in their bedrooms. Like the corrupt warden in The Shawshank Redemption, I would have had Inmate 1 do my taxes, but as I now have no work and my unusual mish mash of weird agency/PAYE but not PAYE/self-employed jobs mean I am earning f*** all, as opposed to not f***ing much at all, it’s all kind of irrelevant.

Talking of The Shawshank Redemption, do you remember the scene where to alleviate boredom, instil hope, and attempt to broaden the cultural horizons of the downtrodden prisoners, Andy Dufresne played Mozart’s Duettino - Sull’aria, from The Marriage of Figaro, over the tannoy? I'd like to say this inspired me, too. I'd like to say it, but unfortunately, where Andy went high, I went low. I've simply gone for threats, and leapt straight to the nuclear option. My loudspeaker message was simply this: “REMEMBER, I WILL BE CUTTING YOUR HAIR”.



Video: The Mozart scene from The Shawshank Redemption

Monday, 23 March 2020

Pandemicology

These are anxious times. 

Admittedly, all times are anxious times when you live with someone with Prader-Willi Syndrome, but these are especially anxious times.

Someone with PWS needs routine, structure, and black and white answers to questions. Changes and uncertainty are the most common triggers for emotional meltdowns. The worst word in our household is ‘might’, especially when used in the sentence: ‘it might happen or it might not’. The coronavirus pandemic is a perfect storm of ‘mights’, and wobbly facts.

This has made the last couple of weeks interesting, in a ‘How the effity jeffity are we going to get through this and stay sane?’ kind of way.

My daughter has been bombarding me with questions, most of which are impossible to give a straight answer to. Opaque, contradictory and downright inept strategies and communications from the government have exacerbated the situation. Bastards.

Issues included:
- The wobbly fact schools might close, but they might not
- The wobbly fact that colleges might close, but they might not
- The wobbly fact that she might qualify as being the the group of students who can still go to college, but she might not
- The wobbly fact Mum might be working, or she might not 
- The wobbly fact Dad will still be working, but he might not if he shows symptoms
- The wobbly fact that people might show symptoms if they have the virus but they might not
- the wobbly fact that supermarket shelves might be empty or they might not *double anxiety because this one involves food klaxon*

We had a better weekend, because some of the wobbly facts were resolved.
- My son’s school is closed
- My daughter’s college is closed
- Although she technically qualifies as a vulnerable student because of her syndrome and having an Education Health and Care Plan, the college very kindly sent a letter with clear advice saying not to send my daughter in if she could safely be cared for at home
- Her dad’s still working (although don’t get me started on the ignoring of ‘social distancing’ rules by his employer. He’s chucking his work clothes through the open door of the washing machine and showering the moment he gets in the door). 
- I’m still working...a bit. One of my part time freelance gigs has been shut down, but I’m working in a reduced capacity on another that I can do safely.
- I’ve told my daughter there are no empty supermarket shelves anymore and am desperately hoping this won’t come back to bite me on the arse when I can no longer get her her favourite banana flavoured malt loaf bars. You may think banana flavoured malt loaf bars are unimportant. You are very wrong.

So, I am now what can loosely, and inaccurately, be termed, an ‘educator’. God love teachers, this whole thing might make millions of parents appreciate them a bit more.

The Drakes’ School of Fish is now open for business.
 
My son chose the name. It is a pun, he painstakingly explained, because a group of fish is called a school, you see. After five minutes of teaching him this morning, I was close to crossing it out and calling it the School of Crows, because the collective noun for these is a ‘murder’.

We made a school poster and agreed some rules. My daughter, not really understanding how asterixes and letters give you clues to swear words, think my rules about ‘Mum and Dad not losing their s**t’ thinks that the incomplete word is ‘temper’. 

We did some stretches, then some maths and English work that had been set online, some spellings, some reading, a dog walk, some PE (video of which will be edited into a silly You Tube video, ‘cos that’s like I.T. innit?). We kept some structure (my daughter is ensuring we stick to the day’s agreed timetable with Mussolini-running-the-trains style precision). My son was pretty darn well-behaved, apart from the massive row we had at 8:53am BEFORE the school timetable had started when I did lose my f***ing t***per.

But we did it. Our personal little maelstrom in the wider, wilder maelstrom world can be kept under control with enough planning, patience, and the anticipation of a 3.30pm gin.

Keep safe everyone. Stay home. If you absolutely have to go out, STAY 2M APART, which, if you’re too much of a numpty to work it out for yourself, as I saw in the most effective meme of the day, is the DISTANCE OF A DEAD RELATIVE. Don’t be an idiot. Don’t throttle your children. And above all else, don’t stockpile banana flavoured malt loaf bars.



Song: Cornershop - St Marie Under Canon (if you want a lift in these troubling times, the new Cornershop album will bring you joy).

Friday, 4 October 2019

21


My girl is 21. 

She’s come a long way since she was a little scrap in special care, struggling to feed.
We were lost and the future was terrifying. As she grew stronger, so did we. Every milestone reached bolstered our souls.

I remember strapping her leg splints on, to help strengthen her muscles. Signing to her for months until she finally signed back and made her first sound, her first words. Pimping her walking frame with furry dice to impress the gang at playgroup. Clutching her hand on her first day at school. Waiting for hours as surgeons fused her spine. Grinning as she bottle fed her baby brother. 


Time has marched on just as my daughter has marched through life, with a wobbly walk, and some trips and falls along the way.

Twenty-one years is a long time, but it feels like a snap of the fingers. She’s at college. She’s got a tattoo. But she’s still that smily, sweet, stubborn star. I still wish she didn’t have to deal with everything that PWS overloads her with, but I know that she is who she is partly because of it, and she’s amazing. She’s 21. 





Song is Snap Your Fingers - Joe Henderson.


We've been helped hugely over the years by the PWSA UK (Prader-Willi Syndrome UK) - an amazing charity who do tremendous work supporting people with PWS, their families, and professionals who work with them. To find out more about the condition and the charity click here .  If you can spare a few quid please click on the Donate Now button on the right hand side of their home page.

Monday, 19 August 2019

Inked


The day finally came. D-Day. Or more precisely P in a D-Day.

After years of insistent lobbying, and following a dramatic alcohol-fuelled New Year’s Eve capitulation on my part, my daughter now sports a pug in a donut tattoo.

I know I said it was a monstrosity. I know I said I’d rather buy her a real doughnut and a real dog before I agreed to her having this inked on her forever. I know. (Incidentally, we do now have a dog, although it’s a labrador and not a pug, but that’s another story).

But I realised that, for once, my girl with Prader-Willi Syndrome, the rare chromosome disorder that shapes and dictates so much of her life, deserved a choice. Something of her own. Something that made her beam with happiness. And trust me - she’s beaming.

The kindness of strangers never fails to smoothe the world’s sharp edges. Tattooist Pete charmed by my daughter’s anxious excitement, came in on his day off to painstakingly paint the pugnacious creation. 
He gave her a special price, for a special girl, for her special birthday (it’s an early 21st present). And he listened and chatted and explained as she quizzed him, told him random plotlines from Emmerdale, repeated how she was “obsessed with pugs” over and over again, but didn’t moan once - in three hours - about any discomfort. This wasn’t a surprise; PWS comes with a high pain threshold, but I’m sure her stubbornness and determination would have carried her through anyway.  

Something quite magical happened; as I watched the design take shape, it changed. It was copied from the original screengrab, and was still - very definitely - a pug in a doughnut. In my head it wasn’t what I would have chosen. But as the happiness radiated from my daughter, and Pete and the other tattooists’ delighted in her delight, my head took a back seat to my heart. It was perfect. It was my girl’s silly, sprinkled, singular choice. It was her.  

Oh, and did I mention? I got tattooed too.



Song is Carter USM - Let's Get Tattoos


We've been helped hugely over the years by the PWSA UK (Prader-Willi Syndrome UK) - an amazing charity who do tremendous work supporting people with PWS, their families, and professionals who work with them. To find out more about the condition and the charity click here .  If you can spare a few quid please click on the Donate Now button on the right hand side of their home page.

Friday, 31 May 2019

Roca


A trait that almost all people with Prader-Willi Syndrome share is stubbornness. Proper, full-on, foot-down, unshiftable, unshakeable, granite-set stubbornness. 


It can make life hugely difficult. 

When my daughter has an idea stuck in her head, stuff that’s supposed to happen, ways of doing things that cannot be deviated from, she is about as stubborn as it’s possible to be. She can’t adapt easily. She can’t be flexible. She can’t wing it.

But - and oh, that ‘but’ word can sometimes bring beauty and comfort - her stubbornness can occasionally produce something amazing. 

Sometimes it makes her climb mountains.

I say mountains, when what I’m actually talking about is a rock. A great big rock in Spain. Calpe Rock is a big, huge, sticky-up thing that takes an age to scale. (I say scale, I mean trudge along the zig-zaggy, rocky paths until you get to a tunnel marking the beginning of the much steeper last third, and realise it just ain’t gonna happen in flip-flops).


We were on holiday with my brother and sister-in-law, who live just a few miles from Calpe Sticky-Up Thingy, and my girl had decided she would make it all the way up to the tunnel. It was a hot, hard, route, and as I flip-flopped my way ahead to try and keep my mountain goat son in view, I was convinced my daughter would never make it that far. 

I was wrong. Out of the blue and pretty in pink, she clutched her dad’s hand, and walked and walked and walked without complaining. 

Her muscles are weak, her gait and balance is wobbly, her stamina is poor. But she’d told her Aunty Jill she was going to do it, and by ‘eck, that meant she would do it. 

She did.
She rocks.
She was so tired she had a siesta that resembled a mild coma.

My stubborn girl.



We've been helped hugely over the years by the PWSA UK (Prader-Willi Syndrome UK) - an amazing charity who do tremendous work supporting people with PWS, their families, and professionals who work with them. To find out more about the condition and the charity click here .  If you can spare a few quid please click on the Donate Now button on the right hand side of their home page.


Wednesday, 15 May 2019

Checklist


I don’t know what it feels like.

My daughter has Prader-Willi Syndrome and it affects her life and our family’s life every day, but I don’t know how it feels inside her head.

I don’t know what it feels like to be hungry all the time. I don’t know what it feels like to have anxiety levels that can be overwhelming. I sometimes imagine her worries to be like a swarm of bees, humming and buzzing in the background, but I don’t know what it feels like.

Flip the coin, though; I do know what it feels like when I watch my daughter cope, and I do know what it feels like when she surprises me.

Like today, when she came home from college, beaming, showing me a booklet she’s been working on with her tutors about mental health awareness.

“I did really well today, Mum. Look at my big list of anxieties I made.”

Shout
pacing
shut down
fidget
crying
shakes
freeze
faint
not talking
random words
stomach turning
blood heart go quicker

My first thought was "That sounds like my symptoms after a hen night involving ill-advised consumption levels of tequila", but my second thought was "That’s a pretty self-aware list".

She was really proud of herself for writing out the feelings and ways in which her anxieties manifest themselves. (Although she’s never fainted, so quite where that one came from I don’t know). And I felt proud too. It’s actually a pretty good check-list, and a demonstration of the very different ways in which her mental health issues can surface.

It’s a bit weird, isn’t it, a parent and a child smiling at eachother and high-fiving over a long list of ways she demonstrates being upset? 

But when it comes to PWS, weird is normal and normal is odd. I can’t get inside her head when she’s being amazing, brave and strong, but I really hope it feels good in there. It should. 



We've been helped hugely over the years by the PWSA UK (Prader-Willi Syndrome UK) - an amazing charity who do tremendous work supporting people with PWS, their families, and professionals who work with them. To find out more about the condition and the charity click here .  If you can spare a few quid please click on the Donate Now button on the right hand side of their home page.



Song is Ty Segall - Feel