Ciaran

Last night, the BBC Two documentary series Keeping Britain Alive: The NHS In A Day, featured a 25-year-old with Prader-Willi Syndrome.

I’m not gonna lie to you (<--this sentence comes to you in a Welsh accent like Nessa from Gavin & Stacey), this was a tough watch.

We were introduced to Ciaran, a fiercely independent young man living in supported accommodation in County Antrim, and learned a little about the many challenges of his adult life since leaving home at 18.

There were, inevitably, a couple of scenes in the kitchen.

Ciaran makes his own meals, under the supervision of staff. Food is carefully padlocked away. His menu is pinned to the fridge door, as is his busy diary of activities and exercise. “I know my schedule,” he tells a carer, witheringly, when he informs Ciaran that he’s got swimming later. “It’s Zumba today. Zumba,” Ciaran explains, impatiently.

“If they didn’t lock your fridge, would you eat the food in it?” the film-maker asks him.

“No, I won’t. But other Prader-Willis would,” Ciaran replies. “If they overeat, they put on a lot of weight, then the wee heart stops and that’ll be the end of them. I’m still alive because I just watch what I eat,” he says, then adds, tellingly: “Sometimes.”

Things escalate when Ciaran is making his sandwich and salad and spots the soups as he is preparing his meal. He bustles around, getting a pan, to the rising alarm of the carer, who knows soup isn’t on today’s menu. Ciaran knows he knows, and when it’s pointed out that he shouldn’t be having the extra item, he loses it. “Go on, make a big fuss of it! Fuck away off! Fuck away off!” he yells, jumping up and down and clenching his fists with anger, the adult language jarring cruelly with the childish tantrum.

It’s difficult to watch, knowing of the physical reality of his hunger and the medical importance of keeping his weight under control.

We saw his mum visiting him and clearing up, checking for hidden food she suspected he might have slipped past the carers. She reveals his nickname of Houdini, given to him because of his magician-like skills of deception when it comes to obtaining food. 

“Can you sometimes be manipulative to get food?” Ciaran is asked.

He gives a wry smile. “If I was hungry. Yeah.” The disingenuousness of his answer brings the same wry smile to my lips. “Which, of course, is all the time,” is the unsaid coda of his reply, hanging in the air almost palpably.

Some things had me and my husband glancing at eachother with recognition: the way Ciaran walks down the stairs putting one foot on one step and the other on the same step, not on alternate steps like most, more co-ordinated people do; and his explanation for his smoking habit as “something I can do with my hands. I don’t like my hands just lying flat. It’s just the way I go.” Our daughter isn’t on the gaspers, thankfully, but is constantly wringing her hands and fiddling with small items. That’s just the way she goes, too.

The film-maker asks Ciaran another question: “Does smoking take your mind off the food?” 

“Er...no. Not really,” he says, puffing on his fag, dressed in his best suit, looking like a boy in the body of a man, wanting to be normal, wanting to be grown up, desperately needing his independence with a desire that seems almost as strong as his insatiable appetite.

His mum was great. We saw her love and concern for her son written all over her face and behind her teary eyes at one point, as she recalled the day he was handcuffed in an ambulance and sectioned in the secure institution after threatening college staff.

And then we saw his mum and dad walking along the seafront with him, chatting about what he’d been up to. Meeting up. Doing normal things. Being together. Being strong.

And the programme faded out to the thumping sounds of the Spencer Davis Group’s Gimme Some Lovin’, and a shot of Ciaran concentrating hard, decked out in his sports gear, as he stepped and hopped and waved along in his Zumba class. Zumba, not swimming.

It's been a hard day
Nothing went too good
Now we’re gonna relax

Like everybody should

And I'm
So glad we made it
So glad we made it
You gotta
Gimme some lovin'
Gimme some lovin'
Gimme some lovin' everyday

Video is The Spencer Davis Group - Gimme Some Lovin'

You can watch the Keeping Britain Alive: The NHS In A Day episode on the BBC iplayer (available until 24 May). Ciaran's appearances are at 06:56, 27:38, 48:57, 50:37, and 56:48

Related Posts: 
Oisin (with a link to a fantastic radio documentary about an 8-year-old boy with PWS)

Howling

My daughter has achieved some great things in her 14 years on Planet Earth.

Despite the weak muscles in her legs, she learned to walk. Despite the weak muscles in her mouth, she learned to talk. Despite her constant hunger, she learned how food comes only at particular set times. (I’m not saying she likes this, but she has learned it).

And then there’s her instinctive savviness with technology.

When I was told my daughter had Prader-Willi Syndrome and was likely to have learning difficulties, I never imagined I’d sit and watch her Googling for her favourite TV character on a laptop. Admittedly, compared to other 14-year-olds - who are speedily updating their relationship status and sharing the minutiae of their lives in a flash on Facebleughrk - her keyboard speed is slow. She’ll painstakingly type out the seach terms by copying the title from a DVD or magazine. But she does it. She bloody well does it.

Even more impressively, she can also work our AV system, which is no mean feat, as it consists of more amps, boxes, and remotes than the average Richer Sounds shop.

She asked me a year or so ago how to put on a track through our Sonos system, which accesses the millions of choons on the Spotify streaming service. And she’s pretty adept at it, now. Watching her type in this week’s favourite artist, or the latest NOW album, and studying her face screwing up with concentration as she chooses and controls her own music still gives me a thrill every time. 

Well. I say every time. Not any more. 

Her intermittent night-time wanderings have sometimes pushed me to the very limits of my patience and understanding. But now it’s gone too far. She’s crossed a line. This morning, at 4.40am, she padded downstairs, and started playing the Mamma Mia soundtrack. 

Nowhere in the parenting manual, not even in the small print at the back, does it tell you how to cope with Pierce Brosnan caterwauling through the house in the early hours. Nowhere.

Video is The Phantom Band - The Howling. Well I'm NOT going to post Pierce. I'm suffering from PTYBD - Post Traumatic Yodelling Brosnan Disorder. It's hell. You don't know, you weren't there, man.

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

Related Blog Posts: 
Dentist
Visual
Straight

Flop

“Mum! He said a rude word!”

“I DIDN’T!”

“He did, he said boobies.”

“I DIDN’T!”

“He did.”

On the balance of probabilities, my daughter was probably telling the truth about her brother.

She continued. “You shouldn’t say boobies. You should say breasts.”

I silently concluded that actually it was marginally more preferable that my four-year-old boy ran around shouting “BOOBIES!” rather than “BREASTS!” but even so felt compelled to suggest: “Well, maybe both of you should talk about something else.”

My girl looked at me scornfully.

“They are just part of our bodies, Mum.”

I felt suitably chastised*, and quite proud of my daughter’s display of maturity.

A moment later, I was slightly less proud of my son, who looked at her solemnly, considered the wisdom of her words, then turned to me and announced: “Yes, they are just part of our bodies, booby-head.” 

The little tit.

*Vocabulary addendum:

I went with chastised instead of my original choice of word, which was chastened - although the dictionary definition of the latter has a rather fine example of usage, considering the subject of this post: 

verb [trans.] (usu. be chastened) (of a reproof or misfortune) have a restraining or moderating effect on: the director was somewhat chastened by his recent flops.  

Having seen this, I will now be compelled, every single night when I take my bra off, to utter: “I am somewhat chastened by my recent flops.”

Big Joe Turner - Flip, Flop And Fly

Shakes

It's my own fault, I admit it.

In my post Anchor, last week, I wrote about the relative peace and calm we were experiencing. I spoke of how my daughter's night-time jitterybugness seemed to be more under control.

So, of course, tonight looks like being the fifth night in a row of quietly-building, goggle-eyed, wandering-about, hallucinogenic sleeplessness. She's so tired she looks like she's got Parkinson's: her head is nodding, her hands are twitchy, and her eyes are darting about like Eric Bristow on steroids. She has what I have decided to christen 'the half-baked awake shakes'. My beautiful, unrecognisable daughter with the syndrome that means she is always physically hungry, was so exhausted tonight she forgot how to eat.

Next time, maybe I'll keep my mouth shut. You know that saying about tempting fate? I think I must have done a pole dance for the bastard.

Video is Feist - Pine Moon. "Pine moon, spoke too soon..."

Bird

"Bird" No.1. Gouache & Acrylic Ink, by Peter Ray Billington.

This painting is my new pride and joy, although technically it's not mine. I bought it for my husband’s birthday, which just so happens to be today. Actually, to be precise, I commissioned it. Commissioning a painting makes me sound very grown-up and grand, when I am very clearly neither, so this is phrase that tickles me.

It’s called "Bird" No. 1, and it’s by a friend of mine, a rather splendid artist and all round decent dude who goes by the name of Pencilsqueezer (scroll down for a link to his website).

I gave him very few instructions, apart from: it’s going in the room where we listen to music, and I want it bright and beautiful. 

My husband unwrapped the surprise present before he went to work - and he was bowled over. He loves it. We're going to sit and listen to records tonight and just stare at it, if that's OK with you.

The computer I’m writing this on is in a different room, and I keep popping back in to look at the painting hanging on the wall in the sunlight. The colours are bursting off the canvas and it’s a stirring sight. Somehow it’s captured the joyous feeling you get from music that moves you, soothes you, fuels you, fools you, lifts you up, brings you down, and spins you all around.

It reminds me of something else, too. A moment when my life changed.

Much, much younger versions of my husband and me were in a rubbish wine bar. 

He kissed me and I didn’t know where I was any more. The world swirled away like an amazing CGI effect, only this was so long ago that CGI didn’t really exist so it would probably been done with plasticine. 

I came out of it blinking in the light like a mole, or an escaped kidnap victim. I was lost, but at the same time I was exactly where I wanted to be. 

I still feel the same. And that’s what I see when I look at this picture. Wrap it up, I'll take it.

Song is Sam & Dave - Wrap It Up

Pencilsqueezer (aka Peter Ray Billington), has a website called Dark Matters, where you can see more of his amazing artwork. He is available for commissions at extremely reasonable rates, and just think of this: a home without a Pencilsqueezer painting is not half as splendid as one with. Contact him through his website, here.

Anchored

I was going to call this post ‘Becalmed’ but when I looked up the dictionary definition and it said something about ‘lack of wind’ I knew I couldn’t apply the word to the flatulent occupants of this house. Especially after the homemade Jalfrezi we had tonight.

So I continued paddling around sailing analogies and landed on ‘Anchored’ instead. 

After being washed overboard by the choppy waters of the last few months (yes, I am going to persist with this - just call me Captain Birdseye), we’ve navigated to calmer waters. We know where we are: moored up in a safe harbour.

Our daughter’s sleepless nights, rebellious behaviour, spaced-out hysteria, and previously unseen levels of anger have subsided. (See previous posts Maelstrom and Oink).

There are still nights when she looks like she’s about to bubble over, but we currently seem to be able to reason with her and talk her down before things escalate. She appears happier, calmer, more in control.  

She surprised me a few times with her awareness. At the height of The Troubles, I asked her if she wanted me to put some of her books back in her room (we’d been forced to remove them, as she was piling them up in her bed, throwing some of them around and reading others all through the night), and she thought about if for an age before she told me: “No, not yet Mummy. I think I’ll want to get up and read them.”

But gradually, with slow agreement and as a reward for good behaviour, we’ve returned the books and magazines and toys that were being strewn all over the place, and so far they’ve stayed put on the shelves. This may have something to do with me continuously ‘forgetting’ to replace the bulb in her main bedroom light (at first subconsciously, but then - look away Social Services - deliberately). The only light in her bedroom now comes from the soft, glow of the streetlamp outside, leaking dimly through her curtains. So she can see to pad to the bathroom if she needs to, but she can’t get up and constantly switch the big light on anymore while she rummages through her stuff, as she was doing. Judge me if you like, but it’s bloody well working, I tell you.

We’ve had the MRI scan and opthalmology exam and the results were all fine and dandy. There is nothing alarming going on inside her head, unless you count her inexplicable love for the criminally dire children’s show Me Too, which strikes me as VERY ALARMING INDEED.

It looks as if the tsunami of feelings was just a build-up of anxiety, mixed with emotional immaturity and a large helping of teenage hormones.

I’m sure it’s not over: she’ll be back to school after the Easter Holidays next week, where she’ll be steering around the rocky reefs of friendships and lessons and emotions and PE. She loves school, but it is the open sea and it may set her brain whizzing again. 

Then, next month, there’s the looming removal of four teeth and the addition of a brace, which I know has the potential for much whizzery and dizzery.

But that’s ahead of us. 

For now we’ve laid anchor.

Video is Ólafur Arnalds - Near Light