Monday, 23 March 2020


These are anxious times. 

Admittedly, all times are anxious times when you live with someone with Prader-Willi Syndrome, but these are especially anxious times.

Someone with PWS needs routine, structure, and black and white answers to questions. Changes and uncertainty are the most common triggers for emotional meltdowns. The worst word in our household is ‘might’, especially when used in the sentence: ‘it might happen or it might not’. The coronavirus pandemic is a perfect storm of ‘mights’, and wobbly facts.

This has made the last couple of weeks interesting, in a ‘How the effity jeffity are we going to get through this and stay sane?’ kind of way.

My daughter has been bombarding me with questions, most of which are impossible to give a straight answer to. Opaque, contradictory and downright inept strategies and communications from the government have exacerbated the situation. Bastards.

Issues included:
- The wobbly fact schools might close, but they might not
- The wobbly fact that colleges might close, but they might not
- The wobbly fact that she might qualify as being the the group of students who can still go to college, but she might not
- The wobbly fact Mum might be working, or she might not 
- The wobbly fact Dad will still be working, but he might not if he shows symptoms
- The wobbly fact that people might show symptoms if they have the virus but they might not
- the wobbly fact that supermarket shelves might be empty or they might not *double anxiety because this one involves food klaxon*

We had a better weekend, because some of the wobbly facts were resolved.
- My son’s school is closed
- My daughter’s college is closed
- Although she technically qualifies as a vulnerable student because of her syndrome and having an Education Health and Care Plan, the college very kindly sent a letter with clear advice saying not to send my daughter in if she could safely be cared for at home
- Her dad’s still working (although don’t get me started on the ignoring of ‘social distancing’ rules by his employer. He’s chucking his work clothes through the open door of the washing machine and showering the moment he gets in the door). 
- I’m still working...a bit. One of my part time freelance gigs has been shut down, but I’m working in a reduced capacity on another that I can do safely.
- I’ve told my daughter there are no empty supermarket shelves anymore and am desperately hoping this won’t come back to bite me on the arse when I can no longer get her her favourite banana flavoured malt loaf bars. You may think banana flavoured malt loaf bars are unimportant. You are very wrong.

So, I am now what can loosely, and inaccurately, be termed, an ‘educator’. God love teachers, this whole thing might make millions of parents appreciate them a bit more.

The Drakes’ School of Fish is now open for business.
My son chose the name. It is a pun, he painstakingly explained, because a group of fish is called a school, you see. After five minutes of teaching him this morning, I was close to crossing it out and calling it the School of Crows, because the collective noun for these is a ‘murder’.

We made a school poster and agreed some rules. My daughter, not really understanding how asterixes and letters give you clues to swear words, think my rules about ‘Mum and Dad not losing their s**t’ thinks that the incomplete word is ‘temper’. 

We did some stretches, then some maths and English work that had been set online, some spellings, some reading, a dog walk, some PE (video of which will be edited into a silly You Tube video, ‘cos that’s like I.T. innit?). We kept some structure (my daughter is ensuring we stick to the day’s agreed timetable with Mussolini-running-the-trains style precision). My son was pretty darn well-behaved, apart from the massive row we had at 8:53am BEFORE the school timetable had started when I did lose my f***ing t***per.

But we did it. Our personal little maelstrom in the wider, wilder maelstrom world can be kept under control with enough planning, patience, and the anticipation of a 3.30pm gin.

Keep safe everyone. Stay home. If you absolutely have to go out, STAY 2M APART, which, if you’re too much of a numpty to work it out for yourself, as I saw in the most effective meme of the day, is the DISTANCE OF A DEAD RELATIVE. Don’t be an idiot. Don’t throttle your children. And above all else, don’t stockpile banana flavoured malt loaf bars.

Song: Cornershop - St Marie Under Canon (if you want a lift in these troubling times, the new Cornershop album will bring you joy).

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