Day Seventeen

I don’t know about you, but I could really do with a pint. 

My phone served up a random memory from my photo feed today - the lovely sight of my girl manning the pumps behind the Rovers Return. Although I would have preferred it if it had actually served up a pint, instead of a pic. When is technology going to match my expectations? Yes, we’ve got the internet, but why can’t I materialise a Mojito in my hand? Is it too much to ask? And while I’m at it, where the hell are our jetpacks? I blame Elon Musk. I don’t know why; maybe it’s because he looks like a waxwork dummy of Rick Astley that’s been left next to a hot radiator since 1987, but I blame Elon Musk.

My hostelry-yearning has been sparked by lockdown life and my daughter plaguing me about going to the pub. 

“When will the pubs  open Mum? When can we go?”

If social services overheard the number of times she’s asked this in the past few days, I’d be put on both a reckless mother list and a 12 Step programme. 

Perseveration, it’s called. People with Prader-Willi Syndrome often perseverate. It’s when an idea, a word, a phrase, or a question gets stuck in their mind, and recurs, even when the stimulus is no longer there. My girl just can’t shift gears sometimes, and repeats and repeats and repeats herself. Answering the question doesn’t help, even if you’ve got a nice black or white response. She’ll still repeat her query, over and over - and when the answer is ‘I don’t know’, then we’re in for Perseveration, The Director’s Cut.

“So when will the pubs open, Mum? When can we go?”

I probably should explain: her desire is actually for a specific family tradition - various members heading to the pub on a Saturday morning to have a coffee with Grandad. My uncle and aunt are regulars. Different combinations of nieces and nephews of mine intermittently attend. And my daughter is a stalwart of the pub troop. The coffee is often followed by a Guinness for Grandad and half a cider for my girl, possibly not unconnected with the fact that the Saturday Club has also been witness to some extremely ‘interesting’ pronouncements, declared by my daughter at high volume in no filter mode (telling her cousin she needed to visit a sperm bank, being one of the most memorable).

“So when will the pubs open, Mum? When can we go?”

I don’t know, sweetheart. 

The pub club is on hold, like so many things are at the moment. thanks to the insidious Covidious coronavirus. 

Like Covid-19 her perseveration is catching. She keeps reminding me of what I’m really missing: the warmth, the company, the hugs, the laughs, and the simple loving heart of these visits.

Plus the beer.

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

Related blog posts: Corrie, Baster

Song is Amos Milburn - One Scotch, One Bourbon, One Beer

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. And while you're at it, write to Elon Musk, would you, and get him to knock the space travel on the head and invent a beer materialiser, please. 

Voice

Special Forces do it with white noise. My daughter does it with her precisely pitched, heat-seeking missile voice. On a good day, I can laugh about it, or filter it out, and let it wash over me. On a day like today, I’m willing to give her my name, rank, serial number, and my secret D-Day plans, if only she would promise to STOP.

My girl’s chromosome disorder means she’s prone to perseveration. She has more repeats than episodes of QI on the Dave channel. If a thing's worth saying once, it's worth saying 50 times. Sometimes it includes a long run-up: she’ll start a sentence, lose track in the middle and begin again, only to stumble at the same point, and repeat the slow-mo stutter.

There are ways to deal with this: Gently asking her to take a breath and concentrate; reminding her that she’s already said the same thing (although this can backfire, and she’ll end up repeating “I’m not going to repeat myself”); and sometimes simply walking out of the room and taking a moment to remind myself that she can’t help it.

Lately, it’s been more difficult. Her voice has changed. It’s become more nasal, louder, and has developed a declamatory tone. She’s started to talk like she’s READING... EVERYTHING... OUT... even when she's just announcing that she's going for a wee. Her tone is deliberate, slow, piercing, and slightly robotic. She slips in some words as reassuring totems for herself: “Hell-o Kitt-y”, “Top-sy and Tim”, and “Lib-rar-y”. 

I’m not sure what’s causing this. She seems to have become acutely aware of her mouth and lips when she speaks, mouthing shapes and whispers in between words, which is oddly disconcerting as from the other side of the room it looks like she’s in a badly-dubbed martial arts movie.

Is the possibility of having a brace for her teeth preying on her mind, or is it another worry - perhaps that she's starting her new school soon?

I’m hoping it’s simply a case of Familial Cabin Fever (on both our parts), otherwise known as Bloody Hell, It’s The Fifth Week Of The Summer Holidays, Surely They’re Over Soon Syndrome.

Video is LCD Soundsystem - On Repeat

Related posts:
Stuck
Perseveration

Stuck

“It’s because I’ve got Prader-Willi Syndrome!” my daughter yelled at her classmate, slamming her hand down on the table.