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

Wind-up

Winding back the clocks unsettles my daughter. She can’t move the little hands round in her brain and click the concept into place.

It didn’t help that I used the phrase: “We’ve lost an hour.” The response of: “But where’s it GONE?” was, of course, inevitable.

It’s a difficult enough concept, anyway. Add in the rigid mealtimes required in a semi-militarised Prader-Willi Syndrome household, and it’s a ticking time bomb of confusion.

Luckily, she was tired this morning and had slept in a little, so it was relatively easy to stagger the breakfast/dinner/tea times to fit into an artificial approximation of her usual pattern.

And, thankfully, at the moment, timings don’t have to be quite as exact as they were when our daughter was little. In previous years, when she’s been up with the lark and feeling particularly hungry, we have been known to refer to the clocks going back to something called ‘Greenwich Really Mean Time’).

Our girl understands more now, can be reasoned with to a certain degree, and is more capable of making choices. She’s willing to have her dinner or tea an hour or so later than normal if she knows she’ll be eating out somewhere as a treat with family or friends. Counter-intuitively, despite her fierce hunger, she sometimes gets even more agitated if mealtimes are brought forward, but if it’s for a particular reason that you explain clearly and give her enough advance warning about, she will accept it. Changes to the food timetable in whatever form they take aren’t something you can just spring on her: they have to be carried out in accordance with the detailed blueprints.  And, just like on Grand Designs, you should really try to stick to the architect’s drawings wherever possible, otherwise the ceiling will fall in.

So we had a morning of discussions about time, hours, time going backwards and forwards, how clocks change, why some change by themselves, why I’d forgotten to change the kitchen clock, why her watch was wrong, why her snack time was 10 o’clock but not really 10 o’clock, what time it was now, what time it would have been, and when will it be dinner time.

The clocks weren’t the only tightly wound-up things in our house today.

Video is Dr. Feelgood - She's A Wind-Up

Video is Cher - If I Could Turn Back Time. Just because I turned back time today, and it gave me an urge to wear fishnets and straddle cannons.

Related posts: Clocks