Light

It took a few days.

Soothing, saving, sleep came; smiles returned; and she started to acclimatise herself to her new dental brace (refitted without drama, fuss or agitation on Monday after she'd succesfully dismantled it at the weekend).

Her teeth were no longer her main focus - buzzing insects were. You may think that the sunshine we’ve been experiencing this week was the signal that summer is finally here, but it wasn't. We work to our own almanac: summer arrives precisely when my daughter starts obsessively discussing the evil nature of wasps. Which she did, repeatedly. The insect-based refrain is refreshingly, comfortingly familiar. I can fire off my answers to her questions like a sharpshooter, knowing exactly what she wants me to say. "Yes, that's right, we love bees because they make honey, no, nobody really likes wasps, no, they won't sting you, not unless you tread on them or really annoy them, yes, your cousin got stung three times, no, I've never been stung, and yes, yes, I think you're right, wasps are evil."

I stood watching her today, at the special school’s garden party, just for a minute. I was there to take photos for the school newsletter (the party had been organised to celebrate the head being awarded an OBE earlier in the year). I’d even worn a frock for the occasion, a wardrobe choice usually strictly confined to weddings, christenings and funerals.

My daughter was in her best flowery dress. She caught my eye, then dipped her head, grinning shyly. I snapped the picture, above, then walked across to her and pushed her glasses up from the end of her nose.

She was back. My girl had reappeared like the sun, startling and tingling my skin.

I let the light wash over me. And squinted a bit, dazzled by the disco pink bands of her braces. 

Video is Madonna - Ray Of Light. "And I feel/Like I just got home."

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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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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