Frenzy

The phrase ‘feeding frenzy’ is an interesting one. It usually comes up in two contexts: the first is when the tabloid media goes bananas over the latest celebrity scandal; the second involves sharks or piranhas. Just imagine if there was scandal about a celebrity who got eaten by piranhas - there’d be a feeding frenzy over a feeding frenzy...

Our life has included long, difficult, feeding frenzies that have nothing to do with Sun reporters or Great Whites. Feeding frenzies in a Prader-Willi household are a whole different thing.

For some PWS parents, they can be literal. They’re when a child gives in to their uncontrollable hunger and sneaks downstairs in the middle of night, and eats and eats and eats. The discovery of which ends in a frenzy of bolted doors, locked fridges, rage and tears.

For our family, the frenzy part has been more about us, the parents, than it has been about our daughter, the hungry one, who as yet has not discovered the illicit joys of night-time foraging.* (*Dear God, I mis-typed that and it came up with ‘the illicit joys of night-time Farage-ing’, which is possibly the most disturbing thing I’ve ever written).  

From the moment your child is diagnosed with a disorder that is so wrapped up in the issue of hunger and diet and overeating and satiety, you become frenzied about feeding. It’s fear, a fear that you will provide the wrong food, that you’ll fail to foresee temptations, that you’ll give them too much food, or too little, you’ll serve up things that are too fattening, or not fattening enough, that they’re missing out because you’re too strict, or that you’re making it tougher because you’re too soft.

You’re surrounded by it, enveloped by it, obsessed by it. And all the while you know that however much thoughts of food dominate your life (for eminently practical reasons), you’re a mere amateur compared to your PWS child. They really take the biscuit, if you’ll pardon the expression.

Your feeding frenzy isn’t constant, though. Just like the Government escalates and de-escalates terror threat levels from ‘substantial’ to ‘severe’ and back down to ‘chillax’* (*possibly), you learn to live with the idea that you have to supervise your child’s diet carefully and continually. You become so used to it, it becomes second nature, and doesn’t sit at the forefront of your mind all the blummin’ time. 

We’re lucky: our daughter, at the moment, despite being 4 foot 10 and half inches of stubborn, pretty much accepts the food rules. 

We appreciate this isn’t the same for everyone, and we know our frenzy levels may need to be raised to ‘ohmygodohmygodsweetmarymotherofjesusonaunicycle’ at any point.

But frenzies aren’t good for you, believe me. Whatever your circumstances, if there’s any way you can de-frenz, try your best. Food is a big issue. A huge, calorific, mountain of an issue. But it is only part of your life. And like all parts of your life, you will get it wrong sometimes, and other people will get it wrong sometimes, and do you know what? That’s OK. You’ll get by, with a little help, and less frenz.

Video is The Fall - Victoria (from the album The Frenz Experiment, you see). Thought I was going for The Beatles or Joe Cocker, dint'cha?

This post first appeared in the October edition of PWS News, the newsletter of the Prader-Willi Syndrome Association UK. They have a very informative website here.

Subterfuge

This week is PWSA (UK) Awareness Week. The Prader-Willi Syndrome Association (UK) want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families. “Talk about PWS” is the strapline. 

Today the PWSA (UK) is talking about healthy living. Do parents have any tips about helping a PWS person eat healthily?

Well, in our case, it’s all to do with subterfuge.

Don't get me wrong, you have to be honest with a person with Prader-Willi. They have to know that they need to try their best to abide by some pretty strict rules when it comes to food, despite their constant hunger, or actually because of their constant hunger. My daughter knows she will become ill if she was allowed to eat whatever she wanted, because when it comes down to it, people with PWS want everything.

So whilst I am brutally honest with her about the whys and wherefores, I use a shitload of subterfuge when it comes to the hows. I employ deceit, tricks, manipulation, and all kinds of underhand shenanigans to help my daughter eat healthily. (Plus my magic handbag, containing emergency rations for those thankfully rare, but potentially explosive, times when circumstances mug you and suddenly find yourself not where you are supposed to be at an allotted mealtime). 

In summary, it pays to be sneaky mother.

Here are my Top Five Sneaky Tips for keeping a PWS person on the straight and narrow:

1) Don’t be like Alan Partridge at the Linton Travel Tavern’s All You Can Eat Buffet - downsize their plate

My daughter’s main meals are served up on a side plate. The portion is a good size and fills the small plate right to the edges. I’m convinced this makes her feel as if she is getting a bigger portion.* (*Note to self regarding bigger portions: perhaps I should get my husband to wear smaller underpants).

2) Strength in depth - have a substitute warming up

There have been occasions when my daughter has dropped a spoonful of rice onto the floor. There have also been occasions when my son has done a fusilli smash and grab raid from his sister's plate and nicked a single piece of pasta. My daughter calmly and methodically devours every last crumb of every meal. If she feels diddled out of just one flipping fusilli, then meltdown can ensue. Hold a spoonful back and have it ready on the bench, for when a replacement is needed quickly. 

3) Packaging is there to be tampered with

You know those little boxes of raisins? You can split the contents in half and stick one lot in an empty box. That way two ‘boxes’ of raisins have the same amount as one. Also, Easter egg packaging can be sliced open and the chocolate replaced with a plastic egg filled with no-sugar, low fat treats. (Bonus: the slicer gets to dispose of the chocolate egg in whatever way they see fit).

4) Embrace the word ‘instead’

If they can’t have a Magnum ice cream, they can have a mini-milk lolly instead. If they can’t have a Mars Bar, they can have a Jaffa cake instead. Yes, the important stuff is the healthy, low fat meals, but PWS people can still have treats - they just need to be planned and accounted for in your daily food routine, and you just need to learn what’s low calorie and low fat and can be given to your child instead. 

5) Maybe it’s not that bad if they don’t understand fractions very well

Especially if you’ve spent several years explaining that when you cut something in half, yes, there’s TWICE as much. 

I probably shouldn't have told you that last one. 

Video is Imelda May - Sneaky Freak

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)

Reverie

We've just spent a splendid weekend with family up in Yorkshire.

The highlight for my daughter, of course, was today's Sunday roast, the sight and smell of which elicited a huge gasp of delight as it was served up. "That looks LOVELY!" she uttered, her eyes gleaming at the sight of the carved chicken. We should hire her out to chefs undergoing a crisis of confidence, because praise never sounded so heartfelt.

Her Sunday highlight followed her Saturday highlight, which was an Indian takeaway (heavy on the tikka, light on sauces and rice).  When she eats this treat, her eyes close, and she goes into a kind of religious reverie.

When someone has Prader-Willi Syndrome it's only natural that the focus is on the dangerous and upsetting aspects of their physical, all-encompassing hunger. Their body does not send them the signals that say they are full up, and once diagnosed life quickly becomes about control and limitation of food.

But sometimes it's good to step back and take a fresh look at mealtimes. My daughter is truly happy when she's tucking in to food. An uncomplicated, natural joy. I see it flooding through her, as she savours every mouthful. Putting everything else to one side, it's a wonderful sight. It always has been. Probably even more so when her face is painted with tiger stripes (see the picture above).

My husband, on the other hand, mint sauce drooling down his chin after too much red wine? Not so much.

While we were up north, we went to a fabulous gig by Geordie folk band The Unthanks, at Holmfirth Picturedrome. They did a wonderful version of the song in this video - Here's The Tender Coming. 

Clean

The food thing.

It's a huge issue. I mean, it still stops me in my tracks when I actually think about it, even after all these years of living with my daughter's Prader-Willi Syndrome.

She never feels full up. We have to be rigid and regimented about mealtimes and portions and punctuality, and she courageously sticks to the rules. But her brain just does not tell her that she's had enough. We have to do that for her.

But sometimes it's good to turn the issue on its head. There is a flip side: By God, she enjoys her food.

Watching my daughter eat is a sight to behold. She doesn't dive in. She gets herself steady and comfortable, grips her knife and fork, and starts the slow, methodical, demolition of her meal.

Every spoonful is savoured. Head down, her hair flopping over her face, she will leisurely hoover up every last pasta shell or grain of rice. She'll scrape the lining off the bottom of every yoghurt pot. She is the Founder, the Secretary and the goddamn President of the Clean Plate Club.

She'll try ANYTHING. Recent favourites are a spoonful of lime pickle alongside a rogan gosh. She'll have crab, cockles, and sardines. Brussels, cauliflower, beetroot, radishes, and spinach. Muesli. Flaming hot Thai green curry. Pickled onions. Salads, casseroles, tagines, stir-frys and gumbo. Separately, obviously. Although, technically, I suppose, she would quite happily eat all of these together...

She's a chef's dream.

The toddler is another story.

Video is Dr John - Let The Good Times Roll (from the album Dr John's Gumbo)

Genius

We finished our tea last night and, as usual, my daughter had eaten every last scrap.

When your child has Prader-Willi Syndrome, their insatiable appetite means you don’t have to worry about anything being left on the plate. They will scoff the lot. Without exception. Even Brussels Sprouts, the weirdos.

She always has three courses for her lunch and dinner: main, low-fat pudding, and fruit. The Holy Trinity.

So she had polished off the lot. She clonked down her knife and fork. She rubbed her finger up and down on each side of her mouth in turn. She pushed her glasses up from the end of her nose, and flicked back a stray strand of fringe.

She looked me straight in the eye. And declared:

“I’m a bloomin’ genius."
 

Video is Ian McNabb - I'm A Genius