Unhinged

Two hours sleep is not enough to survive on. It makes you slightly unhinged. Margaret Thatcher managed on four, and to be honest that explains a lot.

Last night we had meltdown. I’m still trying to get to the bottom of why it happened, but so far I’m stumped. 120 minutes kip is not sufficient to keep the brain cells whirring fast enough to do the necessary sleuthing. I’m chalking it up to ‘just one of those days’.

My daughter had had a twitchy evening, asking random questions, repeating herself, and nervously sticking her fingers in her mouth.

The volume got louder, the questions more off-kilter.

“Am I going to shrink. Shrink. SHRINK?” was the starter for ten (explained by the fact that her prescription for growth hormone hadn’t been ready at the chemists, so she knew she’d miss her injection for one night).

Next minute, it was “Is Hitler alive? Hitler. Hitler. HITLER!” (this one made me laugh, I must admit. She’d been learning about World War II in her history lesson. Apparently at one stage, she thought he was in the school toilets). 

“No, he’s dead. He died in 1945, sweetheart. Sixty something years ago.”

“Ah, so if he hadn’t died he’d be dead.”

“Er...yes.”

“IF HE HADN’T DIED HITLER WOULD BE DEAD.”

“That’s right.”

This was a bright spot in a dark night.

From this point onwards, my usually compliant, polite daughter clambered into her stubborn shoes and wouldn’t take the cement bastards off.

Getting her to have a shower was a battle I wish I’d never started. Getting her to clean her teeth was another. Persuading her to stop cleaning them was another. She didn’t want to go to bed, she got up six times for a wee, she turned her light back on countless times, searching her room for books she couldn’t find, wandering down the stairs to put them in her school bag and take them out again. All the time, all requests were ignored or given some serious attitude. “NO. I WON’T. I’M JUST DOING THIS. No, no, NO. I will NOT.” Every time I told her off, she giggled to the point of hysterics. Threats to ban favourite toys, and subsequent confiscations, had no impact.

I tried ignoring her because surely she’d flag, but after hours more of footsteps, bangs and crashes from her room, more visits to the loo, her dad ominously putting a shelf-load of books in a black bin-bag, more loud backchat, and finally, the piéce de resistance - wetting the bed (quite deliberately) at 4am, I gave up. Nothing, and I mean nothing was going to stop her mini-rampage. So I left her to it, and snatched a couple of hours kip.

This morning, I was shattered. My daughter, of course, was bright and breezy. 

She smiled up at me, bashfully. “I’m sorry, Mummy. I’m going to be really good today.”

Video is Eels - Unhinged

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Meltdown
Wave
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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

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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.

Choices

My daughter tied herself in knots today, struggling with choices.

She was red-eyed and wild-headed when she got home from school.

Her teachers are trying to gently wean her off her current obsession with Hello Kitty by trying to get her to occasionally choose something else when she has the option. 

She’s so single-minded about her inexplicable love for the Japanese animated cat character that she’s announced she doesn’t like anything apart from Hello Kitty.

So the innocent suggestion that maybe she could pick a different picture to be used on her reward tokens went down like a cat in a sack in a well.

The tokens are little laminated pictures that the teachers stick on the wall of the classroom under the pupils’ names when they complete good work, or behave well. Unsuprisingly, my daughter’s icons have a feline theme. And she really didn’t want to change them.

We had a good hour of discussion on the matter. I say discussion, it was like looping the loop on a verbal rollercoaster and ending up back where we started, slightly out of breath and with a headache.

After some further contemplation, however, she suddenly voiced a new mantra.

“I am going to try and be good with choices, Mum,” she informed me. “You have to learn to make choices, don’t you? That’s what I’m going to do. I’m going to try and choose different things. Because you need to choose, don’t you?”

I agreed. The first time she said it, and then the second, third, fourth and fifth. By the 50th, despite my ability to filter out the repetition (a skill I’ve developed over the years to cope with the perseveration element of her syndrome, although my Mum would say I’ve always had ‘selective hearing’) I’d lost interest and much of the will to live.

I patiently explained to her that perhaps she’d talked about this whole thing for a little bit too long and that it might possibly have started to become annoying.

She tipped her head to one side, raised her eyebrow, and gave me a withering look.

“It’s because I’ve got Prader-Willi Syndrome, mum. You should know that by now.”

Video is Fat Boy Slim - Weapon Of Choice

"You can go with this,
Or you can go with that".

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Perseveration

Bed

It’s a thought that she can’t shake. It’s an idea that’s stuck. It’s something that goes round and round in her brain.

She’ll mention it. Then she’ll mention it again. And again. And again.

I’m about to use some technical language here, so bear with me. There is, absolutely bugger all chance of getting her to change the subject.

Today’s superglue phrase was “adult single bed”.

My daughter’s friend at school had told her she’d got a new bed. A cabin bed with steps up to the mattress and a little ‘tent’ area underneath.

“How big is Bethany’s bed, Mum?” My daughter asked me, at the beginning of what I didn’t realise then was going to be a Very Long Conversation.

“Oh, it’ll be the same size as yours, it’s just it’s taller and got a bit underneath it. But I should think it’ll be a single bed size.”

“A children’s bed?”

“Well, probably not. Single bed size, I suppose, is an adult size.”

“So an adult single bed, then.”

“Yes. An adult single bed.”

And so it began. This phrase was repeated scores of times as my girl talked to me about it, then to herself, then back to me, and then back to herself.

The great debate was interspersed with supplementary questions. “Why don’t you have an adult single bed, Mum? You’ve got a double one, haven’t you? Is that a double adult single bed? Can a double be a single? Is it an adult bed? Can you get a children’s double bed?”

It got a bit wearing. My husband arrived home. I greeted him with the words: “Can you talk to your daughter about her adult single bed, please, because if I have to say it one more time I’m going to go and play in traffic.”

We had a respite while she ate her tea. Someone with Prader-Willi Syndrome isn’t all that chatty when polishing off every last scrap on their plate. Anything else they’re obsessing about takes a back seat for a while.

But then it was back with a vengeance. I finally cracked. In a reasonably calm manner, but through gritted teeth, I said: “Enough now. It’s not all that interesting talking about beds all the time. Let’s forget about it now.”

She looked at me solemnly. 

“OK, Mum. I’m not talking about beds any more. I’m tired. I’m going to bed. I’m going to bed right now. And I’m not talking about beds. It’s not very good is it, to talk about beds. I’m going to got to bed and not talk about beds any more. In my adult single bed. Because that’s what I’ve got: an adult single bed.”

Video is They Might Be Giants - Bed Bed Bed