Day Twelve

There are some things humans yearn for. You know: eternal youth, comfy pants, world peace, a self-replenishing wine glass. That sort of thing.

What I find myself wishing for most often, apart from the wine glass thingy, is a little bit of calm.

Anxiety looms large in our household. Chief Loomer is my daughter. Anxiety is a huge issue with many children and adults who have Prader-Willi Syndrome, and my girl can sometimes be a little fizzing firework of anxiousness.

It’s fuelled by the PWS physical hunger and obsession with food and the inability to deal with emotions. It’s sparked by changes to routine and random - innoculous, and sometimes...um...nocculous, triggers. 

Patience is needed. You have to learn when to let the anxiety run its course, when to intervene, when to ignore and how to distract. I always do the right thing and never lose my shit, obviously. Well, I say never, but I would like you to see something my daughter wrote on the poster she filled out after a morning of persistent, repetitive, anxious avalanches. On it, she had to describe what she could see hear, touch and smell in her immediate surroundings.

First on the list of sounds was...shouting. Yes, on the family Mindfulness exercise, designed to instigate calm and restore equilibrium, the thing she listed hearing most was me, shouting.

The smells she listed in the next section included wet dog and bonfire smoke (incidentally, if it been last week she could have actually put down barbecued dog hair, as the dog managed to wedge himself under the barbecue for long enough to set himself ever so slightly on fire), but she missed the strongest aroma. The stench of guilt coming from me.

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

Song is The Housemartins - Anxious

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 and donate anything you can spare - a few pence or a few pounds, it all counts. You can be motivated by altruism or even guilt, I don't mind.

Day Eleven

Technology brings me several joys (including the obvious, like Netflix, Spotify, and reading my Kindle in the bath. Although, in case you're wondering, no, unlike a real book, an overnight straddling of a radiator will not revive a dipped Kindle. But it will burn your thighs *thank you, I'm here all week*).

I could happily binge all day on my daughter's texts and emails, for example. A particular favourite during the lockdown has been discovering that she emailed the local library to ask if she can join the annual summer reading scheme. Upon closer inspection - and discounting the fact that libraries are currently closed due to the Covid-19 crisis - it seems she's actually messaged the Tennessee State Library & Archives, who sent a very friendly reply, suggesting that perhaps she meant to send it to the Nashville Public Library. She really didn't.

But the biggest joy today was watching my girl video chat with her little PWS buddy Polly, who is celebrating her 9th birthday.

She first met Polly years ago at one of the Prader-Willi Syndrome Association UK family weekends, and usually sees her every year at one of these amazing events, where people with PWS and their friends and families get the chance to meet, swap advice, share stories, and just hang out in a world where your abnormal normal is EVERYONE'S normal.

We thought it would be nice to wish Polly a socially-distanced Happy Birthday online, so we prised the laptop from my son's cold dead hands (the only way he'd relinquish custody of it), set up a Zoom meeting, and let the girls hold one of their very unique conversations. These chats, as in real life, are stop start, a bit random, and involve every level of interaction from intense interest to daydreaming and silence, with giggles in between.

The highlight was the off-camera arrival of the postman at Polly's house, delivering a birthday present from some family friends, which was then brought into camera shot, and opened. My daughter thought the live-streamed unwrapping of a personalised cushion was the best darn tootin' thing she'd seen all day, as they'd probably say at Nashville Public Library.

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

Song is Carole King - Wrap Around Joy

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 and donate anything you can spare - a few pence or a few pounds, it all counts. I've not donated as much as I wanted to, for example, as I suspect I'm  going to have to save up for some transatlantic library fines...

Day Ten

The last attempt to help my daughter with college maths work saw me not only reach the end of my tether but run screaming towards the distant horizon with it looped by a single strand around my ankle. 

Today we returned to the subject.

This was, obviously, only after I'd cleared my head of the Post Traumatic Maths Disorder flashbacks of my girl simply refusing to tell me a Rubik's cube was called a Rubik's cube just to make the point that she definitely didn't know the names of 3D shapes, including the ones she did.

So in my capacity as Headteacher, Adminstrator, and ‘Specialist In Every Subject Once I’ve Googled The Answer’ at the laughably chaotic home education unit formerly known as my home, I tried something new with her: the hands-off approach.

In general, my daydreamy girl needs prompting to complete tasks. When it comes to maths, there's the added difficulty of her stubbornly announcing over and over again that ‘this is not my strong point’ as she decides she cannot do a task before she has even looked at it.

So I presented her with a fait accompli, deliberately printing off an easier exercise from the college website, telling her she was perfectly capable of completing it without help, and leaving her to it. 

I’d love to add that I then retired to the garden for a mojito, cigar, and an intimate massage from my live-in Cuban pool boy, but this did not happen, as I’ve had to furlough Miguel, because there’s only so many staff you can keep on in these difficult times. So instead, in...you know...the actual real world, I grabbed a cuppa and transferred my attention to my son's schooling, the highlight of which was us looking at our garden as a microhabitat, and him asking me if the empty beer bottles spilling out of our recyclying bin counted as part of the ecosystem. The cheeky git.

More than an hour later, my daughter announced she had finished. The handful of questions (involving counting and comparing the amounts of different items of fruit) had taken a loooooong time, partly because she had obviously been grappling with her ‘can’t do maths’ blinkers, and partly because she’d decided to hand-write a 100 number grid to help her add up sums like 6 plus 4. (If you look at the picture, you’ll see she must at some point have realised she didn’t need to go all the way to 100, and scribbled out all the numbers above 14).

But she did it. I don’t care that she’s 21, and the questions were easy enough for a very young child. She did it. And I discovered that sometimes the best method of teaching her is not to.

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

Song is Arlette Zola - Mathématique Elémentaire 

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. Thanks to every one of you who has donated 2.6 bananas, or 26 bananas, or any other amount of fruit. Please give money next time, though, yeah?

Day Nine

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Day Eight

My hour-long daily dog walk gives me time for some deep contemplation about life and the beauty of nature. Although this morning I had to pick up a labrador turd from next to a dead pigeon, so, there’s that.

It was a fragrant start to what, by my calculations, is the 42nd day of UK lockdown measures, and Day Eight of my charidee blogathon. Only Day Eight and I’m writing about dog poo. God help us all.

Yesterday I spoke about food, and the insatiable appetite that affects people with Prader-Willi Syndrome. 

Today, it’s another biggie - emotional immaturity.

I’m not talking about simply having a short fuse, like my brother did when we were kids and I used to be able to make him lose his shit instantly, with one laser-targeted insult. It was as easy as snapping my fingers, which was ironic, as he did, on one occasion, snap my finger. And burst a blood vessel in my eye when his wild attempt to give me a dead arm missed and connected with my eyeball instead. He’s a police officer now, which I hope you will find reassuring.

No, the kind of emotional immaturity I’m talking about is the PWS person’s inability to understand and control their emotions. 

The loss of control can take different forms: ‘temper tantrums’ more akin to a toddler’s; violent rages (a hefty teenage boy with PWS who has had testosterone supplements can be a frightening, unstoppable force); or sobbing meltdowns.

My girl’s speciality is the latter, a wave of crying that comes over her - sometimes with an obvious cause, sometimes not - that you have to sit and wait out, as while it happens she is oblivious to anything you are saying. You know, like how your mate got after she came round and drank two bottles of merlot after that terrible break-up and then just wouldn’t stop, despite you telling her she was better off without the bastard. The only difference with my girl is that when the tide rolls back and she stops crying, she suddenly clicks back to normal, as if nothing has happened. Not like your mate, who will spend the next half hour telling you she bloody loves you. And then puke.

The flip side of my daughter’s emotional meltdowns are that when you think she might have one, she won’t. When my mum, her beloved Nanna, died, she informed me that she felt like she should cry but she probably wouldn’t. She doesn’t understand emotions, even if she sometimes gets the theory of them, she can’t always recognise what she or others are feeling. 

Today, the feels are good, though. My daughter is curled up on the sofa watching a 1994 film adaptation of Black Beauty, happy and fascinated and not questioning the logic of a horse whose inner voice is narrated by Alan Cummings. My boy is near me, but not needing my immediate attention, as he is lost in the world of Minecraft. So I’ve been left alone long enough in daylight hours (for 42 minutes to be precise) to listen uninterrupted to an entire LP (a rather splendid pink vinyl copy of St. Vincent’s Masseducation). Although it may now have a scratch on it from where I was a bit clumsy leaping up to lift the needle when I remembered too late that the chorus to 'New York' contains not one, not two, but three perfectly enunciated ‘motherf***er’s.

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

Song is St. Vincent - New York. You're all right if your kids are listening: this version says 'you're the only other sucker'. I mean, I prefer the sweary one, but I thought I'd treat you to the catsuit.

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. All of you who have donated 26p, £2.60, £26 or any other amount are awesome motherf***ers, sorry, suckers.

Day Seven

As the Great Discombobulation of 2020™ continues its relentless progress, my erudite and philosophical* marathon musings (*brainfart blogs) continue apace.

Writing a blog a day for 26 days during the Covid-19 lockdown (to raise funds for the Prader-Willi Syndrome Association UK) is more taxing than you might think. My fingertips are vaselined up to prevent keyboard chafing, and I've done my nipples too, but that was just because it felt nice.

So as we reach Day Seven, I've decided to talk about the biggest cannon in the syndrome's artillery: FOOD. Or more specifically, the overwhelming and insatiable appetite that affects people with Prader-Willi, and their consequent obsession with food.

It's both physical (the trigger in their brain which should signal that their stomach is full doesn't work), and mental (imagine being hungry all the time and how much this would dominate your every thought).

Some families have to lock their fridges, kitchen cupboards, and even bins, to prevent their PWS child or adult food seeking and stealing (there have been cases of people eating frozen food when fridges but not freezers were locked). Not every person with PWS has such extreme behaviours, but almost all have a life-changing and challenging relationship with food.

So the current Covid-19 shituation (yes, I have spelled shituation correctly) is particularly effing excruciating for many PWS families. Someone with PWS finds coping with changes to routine difficult at the best of times, so many just cannot understand why the supermarkets have gone all weird, their favourite foods are often not available, and when it comes to shopping for food, their Mum or Dad are no longer preferring the 'little and often' technique, but instead are doing it 'on a bigger scale but less frequently'* (*coincidentally, this last phrase also applies - thanks to my husband's shift patterns and the kids being home all the bleeding time - to our sex life.  Oh, God, I seem to have typed that out loud).

Where was I? Oh yes, the food thing. In lockdown this is proving doubly difficult for everyone because normal distraction techniques often involve taking the PWS person away from the home and in particular away from the temptations contained within the kitchen (for us this means going to the library, heading to the cinema, visiting Grandad, or going for a walk, the first three of which we can't do, and the last of which we can only do once a day).

So if you're currently enjoying an 'interesting' relationship with food (aimless fridge foraging I believe is a current 'thing'), just subsitute raging hunger as your motivation to munch instead of merely just boredom, and spare a thought for someone with PWS.

You could also spare a quid or two, if you like.

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

Song is Spearhead - Food For The Masses 

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. I can't express my gratitude enough to everyone who has contributed so far. Well, I can't express it now, but I can when social distancing rules are relaxed. 
You guys who have given are great. You other guys who haven't given yet could achieve greatness. And OK, I promise not to thrust greatness upon you.

Day Six

I’m not saying things have gone feral here, but I have been reduced to grunting and burning stuff.

I had a pile of paperwork half as tall as me to dispose of, but once my ancient shredder died after three sheets, I decided fire was a valid option. Being all middle class, this resulted in me ordering a chiminea.  A cheap chiminea, cheap chiminea, chim chim chiminea (apologies, but I’ve been singing this all day). 

When the socially-distanced delivery driver dropped it and ran, I roped the kids into helping me with the Some Assembly Required. The only lesson anyone learned from this decision was ‘Don’t’. Don’t involve your kids in any form of required assembly.

So I’m sitting in the garden, eyeing the grey clouds and incinerating my way through the stack of papers. If you're wondering where the pile has come from, most of it is from my daughter, and is related to her Prader-Willi Syndrome (PWS). Because when someone has PWS they also automatically become a GOSOP (Generator Of Shitoads Of Paperwork). This monster pile included my girl’s old Independent Education Plans, out of date Statements of Special Education Needs, and hospital letters from long-retired consultants, much of it dating back to the early 2000s (I’ve got three boxes of more recent paperwork that are going to remain in the loft, probably for another decade or so!). 

For those of you who would like to paint a mental image of me, my rapidly greying hair is sticking up in wind-blown tufts and I have a 1000-yard stare from this morning's home schooling (which included a science experiment involving a bag of margarine and some ice cubes, plus a lesson with my maths-intolerant daughter on 3D shapes which left me wanting to make a human sacrifice of myself on this very chiminea). 

I am dressed, optimistically, in a T-shirt, shorts and flip flops, which is OK because this bonfire of the sanities is generating some proper heat, and I don’t care, it’s April, and I will now be wearing my shorts until October, because I’m hard, me.

My daughter has emerged from inside, asked if she can poke the flames, and announced that I ‘smell of smoke’. 

“Why do you think that is?” I asked.

“Oh, it’s because you’re using the chimpanzee-er.”

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

Song is Isobel Campbell & Mark Lanegan - The Flame That Burns

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. I've been overwhelmed by everyone's generosity in these uncertain times. THANK YOU to everyone who has already donated! 26p or £2.60 or any amount you care to give - it's all hugely appreciated, unlike my promise to hand out post social distancing sexual favours to those donating £26 or above, which has seen a number of less than enthusiastic responses. What's wrong with you all? If you could see me in my flip flops, standing by the chiminea, holding the fire tongs provocatively, you'd soon change your tune...