Day Nineteen

Being in a household with a Prader-Willi person means you do learn to filter stuff out.

I can wilfully, skilfully ignore a level of background blatherings that would cause a random visitor (remember them?) to remark: “How can you hear yourself think?

When my husband and I do our unspoken tag team thing - otherwise known as when I sidle out of the room just after my daughter corners him in a particularly repetitive conversation cycle - I still vaguely register the conversation, but unconsciously filter it out to a background hum.

This happened yesterday, but my filter gradually failed as my daughter’s voice grew more panicky, and my husband’s started to sound as if his teeth were being well and truly gritted. I flipped my ear switch from ‘ignore’ to ‘earwig’, as I detected potential entertainment.

Her dad seemed to be explaining to her what ‘pixellating’ meant. He sounded like he was coming to the limit of the number of times he was prepared to answer the same question. I surmised this was what the last 15 minutes of ‘background hum’ had been about, but I couldn’t work out the context.

“I’m not going to tell you again, because I’ve already explained it, A LOT,” he said firmly, his exasperation clearly audible. “If you want me to watch ‘The A Word’ with you, you need to stop asking me that and PLAY the programme!”

Cue another anxious barrage of questions from her about ‘pixellating’. I started heading towards the door, motivated by a combination of nosiness, support, and the desire to take the piss. And just as I got there, the mystery of where the question had come from was solved.

“But it says in the listings that Joe is pixellated on his teacher!” said Josie, the confusion clear in her voice, possibly because she was trying to understand why Joe’s face would need to be disguised.

“All this time you didn’t think to tell me it’s in the listings?” came my husband’s accusatory voice, followed first by a pause as he located the remote and checked the programme synopsis, and then by a very large sigh.  “No,” he said, in the voice of a soldier, tired of war, “it doesn’t say that. It says Joe is fixated on his teacher. Fixated!”

"Oh!" came her unabashed reply. "Well, I know what that is."

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

Song is Céu - Amor Pixelado - if you watch the video, you'll see she starts off well with the social distancing, but lets herself down by the end. Where's your 'common sense', woman?

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 know I keep banging on about it. You could say I'm pixellated on it.

Chronicles

I came up with a new non-sweary swear today. It was a tweak of Sylvester the cat’s “Sufferin’ succotash”. “Perseveratin’ balderdash!” hasn’t quite got the same ring to it, but saying it to myself in a lispy cartoon moggy voice possibly saved my sanity (although if anyone had overheard they would have thought otherwise).

You see, my daughter has been putting the persevere into perseveration this week. (Perseveration is the uncontrollable repetition of certain phrases and questions. It’s a common trait with Prader-Willi Syndrome. She’s done it forever, and ever, and ever, and ever, and ever, and ever...well, you get the idea).

Some of her questions and mantras have been around for a while, but what I realised today that one in particular is growing. It is having extensions added to it. 

I had a little search through the posts on this blog, and discovered the earliest recorded instance of the pick of her perseverations was in April 2011, when I noted that “Have I still got lots of teeth?” was high up in that week's Top Five of her repetitive sayings. Over the months, this morphed into “Do I grind my teeth?” and later: “Do I gnash my teeth. I don’t gnash my teeth do I?”, and then later still the addendum: “This tooth is worn down more than that one, isn’t it?”

A few weeks ago, I broke my rule of not engaging with the tooth questions after five times of answering them, and told her in no uncertain terms that she didn’t need to ask them any longer as she hadn’t ground her teeth together since she was little. She demanded to know exactly how long, and I came up with an arbitrary answer, which has now been tacked on. So the perseveratin’ balderdash now goes something like this (keep in mind this is a sample of my girl having a complete conversation with herself, answering all her own questions in a slightly exasperated manner, at the same time as directing all the questions to the silently teeth-gnashing me)...“Do I gnash my teeth? I don’t, do I? No, of course you don’t. Is this tooth worn down more than that one? It is, isn’t it? No it’s not. Do I gnash my teeth? I don’t do I? No, of course not. You haven’t done it for 12 years!” 

Ad. Bleedin’. Infinitum.

So I’ve started to have this thought. It’s kind of wicked. I’m going to have to think carefully about it, because it has every chance of backfiring. But I’ve realised that I probably have the power to shape the continuing growth of the Tooth Chronicles. What will the next clause be? And can I lob in something random, just to amuse myself?

I’ll report back in a few weeks. I’m thinking along the lines of: “You’re not a pterodactyl in a tutu.” 

Video is Edwyn Collins - Do It Again

Furtive

I frequently make furtive phone calls. Sometimes I stand at the bottom of my garden, sometimes I lock myself in the loo, and on occasions, I’ve made them from the middle of a vaguely soundproofed homemade duvet cave. (I would like to point out that I am neither a drug dealer nor an adultress, and my motives are pure, even if my methods are a little sneaky). What I am doing when I get my furtive on is trying to escape my daughter’s superhuman hearing skills.

My girl has Prader-Willi Syndrome, which means her muscles are weak and the part of her brain that should tell her she’s full up doesn’t work. But one thing does work, well enough to pass the Justice League and Avengers Entrance Exam: her ears. 

Her ability to hear conversations from across the room, the house, and even from a different floor, is amazing. I’m considering fashioning her a lycra suit, some shiny pants to wear on the outside, a cape, an eye mask, and a symbol to signify her powers. Not Superman’s S or Batman’s bat - it’s going to have to be an earwig. Because earwigging is her great skill. You cannot start a conversation with anyone without her popping up like a meerkat, blurting out her Earwiggingwoman catchphrase: “What do you MEAN?”

This makes it difficult when we have appointments or meetings or are arranging visits. Because in order to make life easier, sometimes I need to do a bit of explaining beforehand. Last week, I needed to tell the new dentist that on no account should they mention teeth grinding, as my daughter is obsessed with whether she grinds her teeth or not (she doesn’t), and a careless use of the ‘g’ word could set her off repeating grinding questions for weeks on end. (I’m shuddering as I imagine what would have happened if my girl had heard this conversation. “Grinding? What do you MEAN, grinding?”). The other day I needed to check with my friend that they were still coming over on Friday night for a curry, because if I tell my daughter it’s happening and then it doesn’t, we will have a meltdown strong enough to liquify poppadoms at 500 paces. (“They’re not coming? What do you MEAN, they’re not coming?”)

So whispered conversations have be sneaked in. The furtiveness is not only necessary, it’s sanity preserving. Particularly in the summer holidays, when PWS serial repetitiveness is unbroken by the school day, and has got to the stage now where it is inside my head and making my eyeballs rattle. There are just over two weeks, or to be more precise 15 full days, to go. I continue to be unashamed of my countdown. 

Fifteen. What do you MEAN, fifteen?

Song is Dr. Feelgood - Sneakin' Suspicion