Release

When the dentist informed our daughter her teeth would need straightening, we braced for impact.

She hated the idea. We had long, long talks before her braces were fitted, where I explained why it was necessary and how she’d get used to it. It didn't seem to soften her resistance. And of course, we suspected from the start that the obsessional nature of our daughter’s Prader-Willi Syndrome would make the process more difficult.

We were right. Three days after her top brace was fitted, she completely dismantled the metalwork during the night, and I ended up taking her to A & E* (*see previous entry Scrap).

But after this Gonzo Audition For Scrapwork Challenge kind of start, things calmed down. She accepted the fitting of a bottom brace, the installation of slightly different style braces at later appointments, and even the joys of elastic bands at night during the final couple of months of treatment.

And this week, after only nine months instead of the expected year, her teeth were freed. They were let off for good behaviour. The scaffolding came off, and the previously higgledy piggledy gnashers were revealed: neat, tidy, and straight, having paid their debt to society for their previous waywardness.

“I liked my braces, Mum,” my girl said to me. The one who’d initially said: “No thank you, I’m not interested,” when the dentist first mentioned the plan. The girl who’d ripped out the Mark 1 model. The one who hated her food getting stuck in between the metalwork.

“It’s a shame they had to come out.”

Song is Diana Ross - I'm Coming Out

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Elastic

Elastic

It was an almighty harumph, from a champion harumpher. My husband stomped past me, muttering. I was only able to pick out a few words in between the mumbled oaths. In a brief moment of articulation, he built up from a Muttley style “Shnikinrickin fashinrockn rassafrassa rickinrackets” to a climactic Jim Royle-esque “Easy? My arse!”.

The source of his impatience was a bag of tiny elastic bands and a plastic tool. Earlier, he’d taken my daughter to the orthodontist, who'd shown him, effortlessly, how the bands needed to be attached to hooks on her top and bottom braces to pull her gnashers together while she slept. His stomp was due to the lack of success on his inaugural attempt.

“I can’t remember you being this rubbish at Operation...” I commented, as I walked past him, with the irritating air of one who is convinced they will be able to swan in, adeptly perform the task the other failed at, and then be all smug about it. I'd picked this dig at his board game skills over the obvious, but ruder: "Should have thought you'd be used to manipulating a tiny, pink, tool..."

Once upstairs, I picked up the hook implement, and approached my daughter, who was lying in her bed. 

“Don’t worry, sweetheart, Mum’ll sort you out,” I reassured my slightly anxious-looking girl. With a few deft moves, one side was hooked, lined and sinkered.

We smiled at eachother. “I don’t think Daddy was very good at this, was he?” I whispered.“Let’s get this other side done, and we can tell him he was rubb...”  I didn’t reach the ‘ish’. The second band was proving a bit trickier, and suddenly it slipped, and catapulted up from the bottom of her mouth to her top gum, with an almighty TWAAAAAANGGGGG!. 

“Are you all right?” I asked, thinking that the elastic missile must have hurt. My girl couldn’t answer. She was shaking. Concerned, I grabbed her face in my hands and looked at her, and it was then that I realised she was giggling, uncontrollably.

Sometimes a mishap or a setback can reverberate, and set my daughter's nerves jangling. Less often, unpredictably, amazingly, she might even find it funny; this was one of those occasions. She set me off, too.  We were reduced to a heap of jelly, both giggling and making intermittent "Dddd-DOING!" noises, our laughs pinging backward and forward like the wayward band.

Video is Sultans Of Ping FC - Where's Me Jumper?

Scrap

You hear about these metal thieves, nicking road signs, piping, and wiring from remote locations for its scrap value. Well, maybe my daughter has identifed a future career path.

Her brand new brace is no longer intact.

This morning, shortly after writing a blog entry here about her first set of braces, and just under three days after the scaffolding was put up, I noticed something odd about her new tooth furniture.

Half of it was gone.

All of the wire, threaded horizontally across her upper set of teeth, attached and anchored by the small squares of metal glued on to her choppers, had disappeared. A couple of the squares on the back teeth were also missing. The rest remained, like tiny symmetrical islands. The ‘bridges’ between them were AWOL. Absent most bloody definitely Without Leave.

“Where are the bits from your braces? Where’s the wire?” I asked my daughter, the panic rising in my throat. One look at her exhausted face told me I wasn’t going to get any sense out of her. She was at the latter end of one of her sleepless weeks, and basically in a trance. When I asked her if she’d pulled off the wire with her fingers in bed (was that possible?), or yanked it off with a toothbrush in the bathroom), she replied “Yes.” To both questions.

I stripped her bed, got on my hands and knees, scoured her bedroom floor, emptied the bathroom bin, checked the sink, peered down the loo, and searched anywhere I could think the bits of missing metal might be. Because the alternative was dawning on me. There was no blood, which was slightly reassuring, but at moments like these the high pain threshold that comes with Prader-Willi Syndrome was uppermost in my mind. Could she? Might she have? Had she swallowed them?

A couple of hours later, after a visit to A & E, an examination, and an X-Ray, I got my answer: no. The NHS staff were all wonderfully friendly, reassuring, caring and knowledgeable, which made me feel less embarrassed about what was, in the end, a waste of their time. What was always more likely to have happened must have happened: the bits of wire must have been washed down the sink or flushed down the loo.

The photo at the top of the page is my daughter, playing ‘pairs’ in the garden at Nanna’s house this afternoon - a game where she normally lines up the cards in meticulously neat rows. It doesn’t really look like her. This is the mildly catatonic state she ends up in after a batch of sleepless nights; this is where we’re at now.

We’re back to see the orthodontist tomorrow. I’m not sure how she’s going to cope. I’m not sure what the plan is going to be. 

Song is Wire - Fragile

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Jaws

My daughter now sports some more metalwork to go with the titanium rods in her spine: a set of disco pink braces adorning her top set of gnashers.

The fitting went smoothly. My girl was biddable and compliant, despite a ragged couple of nights' sleep. The orthodontist and dental nurse were like a Formula One pitstop team, working swiftly and efficiently to fit, adjust and tighten, then wave her off. (They didn't actually have flags).

Before the appointment, I’d tied her hair in two bunches at the sides rather than her current preference for a ponytail at the back, thinking it might be more comfortable for her as she lay on the dentist’s chair whilst her braces were fitted.

So as I helped her up, and she gave me a big smile to show off her new fretwork, a thought suddenly popped into my head: she looked like the love child of James Bond’s steel-toothed enemy Jaws and his diminutive be-pigtailed girlfriend Dolly, in Moonraker. 

We’ve had a ropey couple of days since. The braces obviously feel odd, and although she’s been insisting - with monotonous regularity - that she likes them, my girl has struggled with how they feel inside her mouth. 

She’s been doing the night-time wandering around in a daze thing, which means she’s been dog-tired in the day, which means she doesn’t take in any instructions from me, which means it's been a bit wearing.

My efforts to tell her to try to eat normally, close her mouth more so she doesn’t dribble, and not to stick her fingers in her gob and fiddle, have had to be repeated over and over again, sometimes with me holding the sides of her face and telling her to look at me as I try to hold her darting, flitting gaze for just a few seconds so she can listen.

I realised too that her habit of wringing her hands together right up against her face with her head leaning slightly forward means she is actually pressing her mouth against the metalwork inside, which is going to cause some soreness and bleeding if we don’t keep on top of it. We need to try to ensure she has something in her hands she can tinker with, and displace the movement to a safer position.

Then there’s the cleaning, a process for which the word palaver seems to have been invented. Removing the gubbins stuck behind the wire and metal joints is no mean feat. We are now armed with a special toothbrush, a tiny wire brush thingy to poke under and around the hard-to-reach bits, and instructions on swilling, rinsing, and spitting. At the moment I’m having to do the mushed-up food removing duties, as in her insomniac space cadet mode, she’s too jittery and distracted to even attempt it. When she finally gets some sleep, and I give her a few lessons, we’ll see if she has the dexterity and concentration to manage it. (Close supervision is, I’m sure, going to be needed).

She needs a little time. She needs to get used to it. Then in six weeks, she’s getting another set for her bottom row of teeth.

Video is Ben E. King - Brace Yourself

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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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Dentist

My daughter saw the school dentist the other day. Yes, I was surprised they had one, too. Apparently, he’s an NHS dentist who visits the special schools in his mobile dentist’s surgery. Which is in a van. (Now I’ve explained that, he actually sounds a bit like a serial killer, and I’m starting to worry...but I digress).

At this point I would like to remind you that my daughter is obsessed with her teeth.  To elucidate: she has asked me at least half a dozen times every day for the past year how many teeth she has; I then ask if any have fallen out since the last time she asked me; she replies “No”; and I tell her “That means you’ve still got 28.” Then it’s rinse and repeat.

Today, she arrived home happy after school, but then when I asked her how her day had been, she got that look. A potential meltdown was brewing, and I hadn’t spotted it beneath the surface. 

Her eyes brimmed with tears as she recalled her conversation with Dr H. Lecter, or whatever his name was.

“The dentist said I might have to have a brace, Mum. But he might have to take four teeth out.” She looked horrified at the thought of her beloved figure of 28 being ruined. 

And then, thankfully, her face changed again, like a warm wind had suddenly thawed her chilly thoughts. She looked at me, nonchalantly, and raised an eyebrow.

“I told him I wasn’t interested.”

Video is Steve Martin - You'll Be A Dentist (from Little Shop Of Horrors)


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