Day Five

So, what do you want to know about infamous conquistador Hernán Cortés? (Spoiler - he was a bit of a bastard). 

What about waterfalls? I can tell you all about how they’re formed (and have executive produced my son’s very informative video for you at the end of this blog. HARD ROOOOOCCCCKKK!). 

Essentially, this enforced home schooling lark means that I am smashing the Year 6 curriculum (as well as my head against the wall at my son’s avoidance tactics). 

I’m also carrying out my own science experiment: Does lockdown cause exponential grey hair growth? (initial examinations indicate yes, yes it bloody well does).

I’m doing less well with my daughter’s learning.

My 21-year-old should be at college, on her Steps To Independence course, learning life skills, doing work experience, participating in tutorials, and being helped and encouraged by experienced staff in a safe setting with her friends. 

It’s specialised and tailored to her needs, because she - like everyone with Prader-Willi Syndrome - has learning difficulties.

As with several of the characteristics of PWS, the level of learning difficulties varies from person to person. Some are only mildly affected and are even able to take some mainstream exams, others have a reading and writing age many years below their own.

My girl falls somewhere on the mild to medium spectrum, illustrated perfectly by the fact that the vast majority of my 11-year-old son’s work is too difficult for her.

It’s hard. It’s hard to keep both kids focused and happy. So I’m winging it a bit. I’m cherry-picking little bits of online college work and letting her loose on BBC Bitesize lessons for much younger children (one science quiz involved a cartoon pug, which sent her into paroxysms of joy. If you don’t know why, you have obviously never met her, because if you had she would have shown you her tattoo of a pug in a doughnut).

I’m including her in some of my boy’s ‘wellbeing’ exercises and discussions, and I’m getting her to write film ‘reviews’ (which turn out to be laborious retellings of the entire plot, in the manner of: ‘and then this happened, and then this happened, too’. (Ask me about every frame of the movie Hotel For Dogs, go on, ask me...). 

She's doing word searches, watching Emmerdale, and going to the park on our daily walk, where she throws the ball for our labrador to fetch, and where she points out - every single time she praises him - that she loves him, but not as much as a pug.

She may not be like other ‘typical’ 21-year-olds when it comes to academic performance. But I think back to the painstaking efforts of some of the many professionals who have helped her throughout her life: the portage nurse who taught us games to help us stimulate her as a baby; the speech therapist and Makaton specialist who taught us how to use simplified sign language to encourage her to make her first sounds and talk; the teachers who used visual aids to help her communicate her needs and make sense of her day; the TAs who learned how to circumnavigate her stubbornness and find a different angle to get her to engage with a lesson, the volunteers at the Prader-Willi-Syndrome Association UK who were on the end of the phone when I was at the end of my tether. I look back and wonder and feel all the feels and thank all the thanks, and love all the love.

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

Video is my boy's guide to how waterfalls are formed. HARD ROCK!!!!!!

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 earns you special 'personal' rewards after this crisis is over. And I'm mulling over doing something silly at the end of this blog challenge if I am incentivised by enough donations. Hopefully this thought is far enough down in the small print to be forgotten about if I chicken out...

Day Four

Today, I’m going to break down some of the characteristics of Prader-Willi Syndrome for you. With some pratting about, obviously.

If your reading device only shows you the first few words of a blog before you click on it, then you will have just read the phrase: ‘Today, I’m going to break down’. It’s always a possibility, of course, but don’t worry, I’m still standing. Or “I’m Dill Danding’, as Elton John inexplicably seemed to be singing on that ‘One World: Together In Our Enormous Celebrity Homes’ concert the other night. 

We’ll leave Mr Dwight Divving His Dife Like A Dandle In The Dind for now, and concentrate on one part of PWS that has one of the biggest effects: low muscle tone.

It’s actually called hypotonia (a word which always makes me picture someone manically feeding hundreds of sheets at breakneck speed into a photocopier, but then I’m an idiot).

It starts BEFORE birth, with Sunday-pub-football-level-instead-of-World-Cup-winning kicks in the womb. High numbers of PWS babies are in an abnormal position at delivery, needing assisted delivery or a cesarean (my girl needed the latter, which had one upside I enjoyed - amazing drugs). 

Then, as newborns, PWS babies are very weak, requiring special feeding and arousal techniques. (It’s a coincidence, because as an adult I also require special arousal techniques, but that’s a whole different thing...).

The low muscle tone has consequent motor developmental delays (this phrase makes me think of being stuck at a roundabout in my battered old Honda Jazz automatic cursing the ‘motor developmental delay’ of it having the pedal-to-the-metal acceleration of a roll-along lawnmower).

So a PWS baby might not sit up until they’re one. They might not walk until they’re two (my daughter was three and a half, but more widespread and earlier growth hormone treatment has brought the average age down since she was a tot).

And children with PWS continue to have problems with strength, co-ordination, and balance. They have delays in activities such as jumping, climbing, and catching. They also struggle with their fine motor skills of drawing and writing.

Physio and orthotics (specifically supportive shoes, splints, and braces) help. Complications, such as scoliosis, may require an operation. If you think you know what stress means, book your kid in for a spinal op or two and you will NEVER sweat the small stuff again.

This bastarding hypotonia is for life. Adaptive and modified physical education programmes are recommended to build and maintain strength, tone and function. That means I spend an inordinate amount of time trying to think of sneaky ways to get my daughter up off her arse and doing stuff without it seeming like exercise. It will not surprise you that we have a fit dog.

One interesting fact you might like to know is that my girl is on drugs favoured by bodybuilders - daily growth hormone injections. She has yet to express any desire to don swimwear, sheen herself up with baby oil, and clench her buns and guns. But, incidentally, that is what I ask my husband to do for me as one of my aforementioned special arousal techniques...

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

Song is British Sea Power - It Ended On An Oily Stage

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 - we've already broken the £500 mark, which is amazing! If you can spare just 26p, it would be help. £2.60 would be brilliant. If you donate £26, I'm offering sexual favours to be arranged when social distancing is relaxed, which may or may not involve baby oil. If this lockdown goes on for much longer we could possibly improvise with a rubber glove on the end of a broom. What the hell, it's for a good cause. 

Day Three

Today’s entertainment has consisted of ‘coaxing’ my son to complete a science assignment on axolotl salamanders (his immediate thought, of course, upon learning how they regenerate amputated limbs, being: “What if you cut their WILLY off?”).

It has also included, ambitiously - and regrettably - reading a college-assigned sexual health resource pack with my girl, which was going reasonably well until I came to the sections on genital hygiene tips and anal sex* (*reader, I clicked onto another document faster than a novice nun being caught looking at NakedHotPriests.com by the Mother Superior.)

In other words, it’s just an average Tuesday in lockdown.

I didn’t expect to be home, social distancing, and *ahem* ‘teaching’. Covid-19 has forced us all, like the axolotl, to adapt. But hopefully not to grow a penis.

The thing is, I should be used to adapting. If you’re the parent of a person with PWS, it’s the only way to survive.

Most people, after all, have never heard of Prader-Willi Syndrome. Named after the Swiss doctors who discovered it (wouldn't it have been great if it had been Toblerone-Leerdammer Syndrome?), it is a rare, complex genetic disorder, affecting approximately one in 22,000 births. You don’t carry the gene for it - it just happens. I mean, I can give you the technical cause, if you don't mind some medical jargon. Ready? 

It's because of some random shit that goes on in a chromosome.

If you're interested, I did once explain it in slightly more detail in an earlier blog post [Genetics], in what amounted to a war crime against science teaching. Click on the link and prepare to be blinded by science. Or amused at my ineptitude. Take your pick.

When my daughter was born and we were given her diagnosis - after three weeks of not knowing what was causing her floppy muscles and her inability to feed without a tube - we were floored. No, not floored, bloody well steamrollered. We had to peel ourselves up from the tarmac and adapt. To her path through life being ‘off-track’. To the calendar crammed with medical appointments. To the constant vigilance around food. To the emotional meltdowns. To the future that was just...different.

We’re still adapting.

For example, home school/college lessons this afternoon have adapted into a showing of Hotel For Dogs on Netflix for the kids, and a stiff gin for me. Change is good.

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

Song is Ezra Furman - I Can Change

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. We've already beaten my modest target - and every donation counts. THANK YOU to everyone who has given, and also to those who are just reading and maybe learning a little bit about PWS. 
I'll repeat my scorecard: 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, please advise me if this will be required or not so I can adjust my training regime accordingly.

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 .