Day Two

Returning from my state-sanctioned daily exercise under Covid-19 lockdown rules (having studiously avoided several wild-eyed owners and exhausted looking dogs), I stopped in the street outside my home, where a couple of neighbours were having a socially-distanced chat.

We shared a joke about us all going stir crazy, and the older chap who lives a few doors down, who I don’t really know, nodded at the poster in my window (see photo) and said: “Very amusing!” sparking off a discussion about having to teach the kids at home.

“Anyone who actually chooses to home school must be completely bonkers,” I said.  His face went a bit odd, before he volunteered, in a tight voice: “I did, with all my kids.”

I suddenly found I had to retire into my own personal house-shaped gated community, sharpish. A strong cup of tea settled my nerves (as although the yard-arm is considerably lower than a few weeks ago, I couldn’t justify gin for at least another half an hour).

Inside, I decided upon some facts to share with you today, as this burbling is, after all, part of my 2.6 Challenge to try to help save PWSA UK and should actually be telling you some facts about my daughter’s condition: Prader-Willi Syndrome.

Here we go. Deep breath. (This is from the PWSA UK's website).

Prader-Willi Syndrome (PWS) is a rare, complex genetic disorder that affects people from birth and throughout their lives. It causes low muscle tone with consequent motor developmental delays, mild to moderate learning difficulties, incomplete sexual development, and emotional and social immaturity, which can lead to challenging behaviours. During childhood, an overwhelming and insatiable chronic appetite usually develops which, without rigorous food management and exercise regimes, leads to leads to food seeking, stealing, and life threatening obesity. PWS occurs randomly in about 1:22,000 births and it is estimated there are about 2,000 people living with PWS in the UK.

Blimey. That’s a lot, innit. Just 100 words, but... a lot. Words with some series bombpower. In subsequent blogs I’ll explain and defuse each bomb like Sandra Bullock in Speed. No, wait, she drove the bus, didn’t she? And after five weeks of lockdown I’m probably more like the mad bomber, Dennis Hopper. So popquiz, hotshots. There’ll be a another blog on here tomorrow. If you read it faster than 50 words a minute, the bomb is armed. If you go below 50, it blows up. What do you do? What do you DO?

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page. THANK YOU to everyone who has already donated! If you can spare just 26p, it would be help. £2.60 would be brilliant. £26 may earn you a sexual favour after social distancing is relaxed, although my dance card is getting a little full. Hubba hubba! Henry, I see you paid £25.99 to avoid your reward, which has crushed me, I tell you, crushed me. 

Day One

So you pay your taxes (unless your name is Richard Branson, in which case you can self isolate right up your own jacksie). You take part in the Thursday night clap for the NHS. You’re a good person. If you’re really honest, you are a little bit fed up of everyone doing marathons in their back gardens and cycling the route of the Tour de France on their exercise bike (where are they now hanging their clothes, that’s what I want to know?), because it feels like the Just Giving website should be renamed OhGodNotAnotherOne.com

But. Yes, I have a huge but. (Yeah, yeah, laugh it up, but judge me when you’ve tried on your skinny jeans for the first time after five weeks of lockdown snacking...)

The Covid-19 pandemic is not only a killer, it’s a killer with a side hustle in collateral damage. Some of the knock-on effects are more obvious: the tanking worldwide economy, increased poverty, damage to people’s mental health. But there’s something else: this disease is threatening the existence of hundreds of small charities. Charities who’ve had to cancel fundraising activities because of social distancing and the lockdown. Charities whose income has plummeted, and who don’t have massive cash reserves to tide them over until life returns to normal. Charities who are vital to the people they help, and who save the Government thousands of pounds by stepping in to provide what in many cases the state doesn’t: expert advice; research funding; resources for families and professionals; emotional support, a listening ear; social contacts and events; and hope, above all else, hope.

The Prader-Willi Syndrome Association UK is one such charity. When my daughter was born, 21 years ago, and she was diagnosed with this terrifying condition, and we felt like we’d stepped off a cliff and were in freefall, they were there to catch us. They were there to throw us the ropes to hold fast to as we slowly pulled ourselves up to safety and solid ground. And that’s why I’ve decided to take part in the 2.6 Challenge and climb Mount Everest 26 times in my bedroom!

Have I f*ck. 

I’m going for the wordy option instead. I’ll be writing a blog a day for 26 days.

You may think this is easy. But I am in lockdown with a 21-year-old person with Prader-Willi, an 11-year-old smart-arse, and a 55-year old man who left the room during a Zoom lockdown party and returned with crayoned-in circular piece of cardboard Pritt-sticked to his head as 'an experimantal miracle bald spot cure'. If I manage to type out anything apart from: “Help me!” in the next 26 days, it’ll be a bleedin’ miracle.

The PWSA UK will fold. It will die, unless it continues to get money coming in at a time when it cannot fundraise as normal. I’m not being hyperbolic or glib when I say that this charity saves lives and for some people makes lives worth living. 

Please go to my Just Giving (you know, OhGodNotAnotherOne) page. If you can spare just 26p, it would be help. £2.60 would be brilliant. £26 will earn you a small sexual favour of your choice, once social distancing is relaxed. 

Don’t take the piss and go for 2.6p, though. I’m going through enough.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is Courtney Barnett - Charity

 


 

Inspinayshiaroul

It was a proud and astounding day for feminism in my household today. 

Let me explain. My girl is ploughing her way through a piece of light holiday reading - I Am Malala: The Girl Who Stood Up for Education and Was Shot by The Taliban.

I use the word 'ploughing' intentionally, and I mean it in the sense of back-breaking hand tilling with no modern tractors involved; it's hard labour for her (not only does she read pages over and over again, but she also carries out regular inch-by-inch examinations of the cover, spine and corners of the book for minute imperfections, just to make the process more time-consuming).

She is definitely taking in the story of the young Pakistani female rights activist, though, demonstrated by her suddenly announcing to me that Malala was "inspinayshiarol".

"Do you mean 'inspirational', sweetheart?"
"Yes."
"Do you know what inspirational means?" I asked, suspecting that she didn't. There was a long pause.
"Yes. Women."
"Inspirational means women?"
"Yes."

I beamed at the brilliant definition, but felt I needed to make her expand a little.

"What kind of women?"

There was another pause. Again, I doubted she would be able to follow-up her line of thinking. I shouldn't have.

"Clever. 
"And brave.
"And kind, Mummy."

I miraculously resisted the urge to respond to her amazing womanly wisdom with a loud: "F**k, yeah!", but I was "F**k, yeah!"ing in my head at top volume, I can tell you.

Video is Sleater Kinney - Modern Girl (NPR Music Front Row)

We've been helped hugely over the years by the PWSA UK (Prader-Willi Syndrome UK) - an amazing charity which does tremendous work supporting people with PWS, their families, and professionals who work with them. Like many charities, the coronavirus lockdown is placing them under unprecendented financial strain - with fundraising events cancelled because of social distancing rules and with no government bailouts for charities, they are facing the very real threat of closure if they don't receive donations. Lots of people are struggling to make ends meet at gthe moment, but if you have anything to spare, even just the price of a coffee, please click on the Donate button on their home page, which can be found here . 

Alpacapanic

People are really struggling as they stare into the abyss of the coronavirus pandemic.

They’re worried and frightened about themselves or their loved ones dying, and they’re having to deal with these fears whilst coping with lockdown restrictions.

My daughter has Prader-Willi Syndrome, which means she hates change, gets incredibly obsessional and anxious, and can become completely overwhelmed by her emotions.

So we’ve had some meltdowns. 

Not, as you’d imagine, centered around worries about her own health or the health of her family. Oh no. That would be too logical for a girl whose anxieties put the tangent in tangential. 

Her biggest recent emotional blow-out was about alpacas. 

She sat in the living room, the panic in her voice rising as she called out, frantically: “Mum! Peter faces a struggle to save a baby alpaca that was born in a storm, but Julian is helping deliver an alpaca in a breech position and they’re NOT THE SAME, MUM!” This very specific worry was repeated, three times, each time with more urgency. 

I had questions, of course. Who is Peter, who is Julian, and was there a lockdown in the alpaca community nine months ago*, or is there another reason for what seems to be an alpaca baby boom?” (*having later consulted Google, I underestimated the gestation period by 3 months).

The kerfuffle around camelids* (*I googled the hell out of alpacas, what of it? Did you know they hum, snort, grumble, cluck, and scream? Well now, you do). Where was I? Oh, yes, the kerfuffle around camelids was actually to do with a telly-related mistake. The 30 word listing in my daughter’s well-thumbed TV choice magazine (which she uses to obsessively check the blurb for every episode of her favourite shows, in advance, during and after watching them), didn’t match the listing on the telly’s Virgin Media guide for the latest edition of The Yorkshire Vet. She wanted the new episode with Peter doing gynaecological things with a jumper-donating South American mammal in adverse weather conditions, NOT the one with Julian dealing with a breech birth, because that was a repeat. 

“It should be series 10, Mum. PETER FACES A STRUGGLE TO SAVE A BABY ALPACA...”

I tried to cut her off, but her mental blinkers were locked and loaded, and we had to hear the same conflicted, specific, sentence about differing vets and differing births for the fourth, fifth and sixth times before I seized upon a longer pause for breath, and dived in with a solution.

“Look, don’t worry, it’s obviously a mistake. Either the magazine or the telly have put in the wrong description. All we need to do is record it, and then when you watch it back, you’ll find out if it’s the new one you want to watch. If it’s the old one, you can delete it.”

I smiled at her. She looked at me, nodded calmly, and said; ‘MUM! IT SAYS PETER FACES A STRUGGLE TO SAVE...”  et cetera, et cetera.

I don’t know about Peter, but I faced a bleedin’ struggle. For the following four hours. She really didn’t want Julian to be butting in with the breech. We had tears, exhaustion, repetition, and teary, exhausted, repetitive, reading-out-louds of the listings. She couldn’t forget about it, be distracted, or focus on anything else. And when the programme finally aired, we watched with bated breath and breathed a sigh of relief. A storm was on the way and Peter was the man.

“I can go to bed now,” she announced, perfectly happy and content, switching off the TV, after seeing just the first minute, and checking the red recording light was on. 

She’s still not watched the f***ing programme.

Song is Sam The Sham & The Pharaohs - Wooly Bully 

We've been helped hugely over the years by the PWSA UK (Prader-Willi Syndrome UK) - an amazing charity which does tremendous work supporting people with PWS, their families, and professionals who work with them. Like many charities, the coronavirus lockdown is placing them under unprecendented financial strain - with fundraising events cancelled because of social distancing rules and with no government bailouts for charities, they are facing the very real threat of closure if they don't receive donations. Lots of people are struggling to make ends meet at gthe moment, but if you have anything to spare, even just the price of a coffee, please click on the Donate Now button on the right hand side of their home page, which can be found here . 

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

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

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).