Indentured

I’ve got a virtual suit of armour. It was forged during the long, wild, terrifying day when surgeons bolted titanium rods into my daughter’s spine. It resides in a box in my brain, where I can rummage around and find it when I am in need of a bit of protection. There are a few other crazy items in the cranium cupboard, including a sink plunger and rubber chicken, but I have no idea where they came from or what I might need them for. But the armour is fished out regularly, and I’m only just packing it away now after its second airing in the space of a week, during which time I became an indentured* knight.  (*Teeth. I’m going to talk about teeth, you see).

My daughter needs to have braces fitted, and this week she’s had two visits to the dentist in preparation, to have two lots of two teeth removed. And I had to sit there about three feet away whilst they stuck an enormous needle in her gums and pulled out a couple of teeth, plonking them in a little tray right next to me, the roots covered in blood. Then watch it all over again seven days later.

It wasn’t actually squeamishness on either mine or my daughter’s part that had me preparing to don my battle armour, though. Her syndrome comes with a high pain threshold, which sometimes is a Good Thing. Needles and blood don’t especially bother either of us. But I was expecting tears, tantrums, and a general mêlée (wasn’t that the name of the car in the Dukes of Hazzard?) - simply because of a number.

Over the last few months, as my girl has struggled to cope with her anxieties and emotions, she’s been turbo perturbed by the idea of having teeth out. Subtraction has been at the root of her root subtraction. She’s been worried by the idea of having less than 28 teeth. She loved having 28 teeth. That specific number. She likes to ask everyone else how many teeth they have, and a common sight if you watch her talking to someone is how quickly into the conversation she will persuade them to stick their fingers into their mouth and dutifully count up their pearly whites. 

And yet, a meltdown didn’t happen. I think a slight Eureka! moment a few weeks back when we saw an X-ray of her mouth where her wisdom teeth were visible may have helped. “Look!” I told her, grasping at the opportunity that had suddenly presented itself to me. “See those four ‘secret’ teeth there, that you don’t normally see, well, if you count them that means you WILL still have 28!”

Cometh, the hour, cometh the man, or girl in this case. We went in, the uprooting was done, and we went back in the next week and repeated the removal process. Not one word of protest, not one flinch, not one conversation expressing dissatisfaction or worry about the whole thing. 

I shouted out a checklist to her this morning before school.

“Got your bag?”

“Yes.”

“Got your coat?”

“Yes.”

“Got your teeth?” 

“Yes.”

Well, she had to take them in and show them off, didn’t she?

Talking Heads - Pull Up The Roots

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Visual

We’re going visual.

We’ve had two peaceful nights and a successful couple of days in getting my daughter back on an even keel after phantom night-pirates hijacked her and temporarily left a small banshee in her place.

Thankfully, she seems to have been swapped back.

A decision to use more visual aids and prompts in an effort to focus her thoughts and answer her questions seems to be helping.  

People with Prader-Willi Syndrome don’t have very a good short term auditory memory. So a long discussion about why she shouldn’t behave in a certain way and what she should do instead is going to lose her attention before any important points have sunk in. To be honest, I haven’t got PWS and I nearly nodded off before the end of that last sentence, so I can kind of sympathise.

So, at the suggestion of her teacher, we’re making cards and pictures and visual representations of IMPORTANT STUFF. Things like how tall my daughter is in relation to her friends. How many teeth her cousins have. You know, the usual things a 14-year-old obsesses about. Well the usual things this 14-year-old obsesses about.

The Tooth Count Card, in particular, is going to be well-thumbed. I suspect it may have had more than a little to do with my girl’s recent wayward sleeping patterns. Because yesterday we had an orthodontist appointment, and my daughter was told she will have to have four teeth out and braces fitted. 

I was pretty pleased with her calm reaction to bad news. Although we already knew this was probably what the orthodontist was going to say, it was still news that my girl didn’t really want to hear. I’d had a chat with the orthodontist beforehand and asked if she could use pictures and visual images to explain everything to my daughter, and she couldn’t have been more patient, or more clear. My girl was miffed, there was no denying it. “I’m not very happy,” she said, looking not very happy. But we kept things simple, kept things calm, and told her that if her teeth were just left to continue growing wonky, then she’d end up only being able to eat soup. Sometimes you just gotta use the food thing. The dentist also provided a picture showing which teeth are going to be taken out. It's there in black and white if Josie asks the question: "Do I have to have any teeth out?" or "How many?", which she will. Many times. 

So I’m ringing round tonight, to get all her cousins who have had braces fitted to tell me a) if they had to have any teeth out and b) to count up how many gnashers they’ve got left. This will provide the raw data for an artwork which won't win any prizes but just might save my sanity.

Blondie - Picture This

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Grind

Some things about Prader-Willi can grind you down. Sometimes it can be one little thing. Something you thought was sorted but turns out not to be.

Popping its nasty little head up over the horizon like a mangy meerkat this week was something grinding. In both senses of the word. 

We went to a new dentist, and she chatted away to my daughter, keeping her engaged, and telling her how well she’d been cleaning her teeth. All good.

But of course, I hadn’t warned our friendly tooth mechanic not to mention the g-word. ‘“There might be evidence of a little grinding, and we just need to keep an eye on it,” she said.

A klaxon sounded in my head. You see, my daughter is quite obsessed with this subject. She used to grind her baby teeth noisily and constantly, until the top set were worn right down (see picture).

Now she's older, she's got a nice set of pearly whites. When the adult teeth came through, she managed, as suddenly as she started, to stop mashing those jaws together. Gone was the clacking and grinding. I’d like to say it was more peaceful, but my girl managed to replace the actual grinding with talking, endessly, about how happy she was that she’d stopped doing it. Which was almost as annoying.

So then it came.  A wave.  In the corner of the examining room, where my daughter sat, as she waited for me to complete the ritual humiliation of being told to floss more.  Her shoulders shook and she sobbed, much to the concern of the dentist and her nurse. I got up and hugged my stricken girl until it passed.

“I don’t grind my teeth anymore,” she muttered, still sniffing. I whispered a brief explanation to the dentist, who told her that she wasn’t in trouble, her teeth weren’t going to fall out, and she was still the Number One Cleaner of Teeth In Chief.

So the crisis was averted. At least I thought it was. And then my non-clacking, non-grinding, toothsome daughter spent the next three days asking me if I was happy she doesn’t grind her teeth like she used to. Over and over again.

What’s that noise? What is it? Oh yes, that would be me. Gnashing my teeth together.

Video Is Grinderman - When My Love Comes Down