Thaw

I am, by extension, better informed about recent snowfall across Britain than most TV weather presenters. Seriously, slap a bit of lippy on me, give me a green screen and a little button thingy to press, and I could give Carol Kirkwood a run for her money.

This is because there was a new entry in the charts of my daughter’s Prader-Willi Syndrome Next Level Obsessions this week, as SNOW rocketed up the bestseller list, passing BOOKS and - incredibly - FOOD, to take the coveted No 1 slot.

“Mum, how much snow is there where [insert different family member or friend’s name here] lives? Mum, we’ve got more snow than [insert random place name], haven’t we? Mum, my school is going to be closed isn’t it? Mum, is [insert random school name] going to be open? Mum, [insert random day] is going to be the most snowy, isn’t it?”

All of these questions (which continued for approximately four days) have needed to be answered. And have been responded to with daughter’s alarming new habit of essentially accusing me of #fakenews. So I’ve had to put the Google results, Met Office pages, online photos and videos from social media right under her nose, several times over, to convince her of the validity of my answers.

Today, things were back to normal. The temperature has gone up a few degrees, and the snow has pretty much melted. I was supposed to be doing my usual Sunday morning duties of helping corral eight and nine year olds at minis rugby, where for some reason I have ended up as an Assistant Coach, despite the fact that my boy tried rugby for four weeks, then decided he’d prefer to be home in the warm, so I go and he doesn’t.

But today’s session was cancelled, so I took my girl for a little walk down to the pub for a bit of mum and daughter time, a cup of coffee and a chat.

“We’re going out for lunch on the last day of term, Mum, so you need to see the menu, and I liked it when I had pasta arrabiata when we went on the Prader-Willi weekend, and McDonalds’ peri-peri wraps are quite healthy aren’t they, and can I have a melon for my fruit today.”

Yep. all back to normal.

Video is Laura Marling - Goodbye England (Covered In Snow)

Whelming

“I don’t care! I love it!”

A 6ft 2in, built-for-comfort-and-not-for-speed heterosexual man, dancing around the kitchen waving a wooden spoon whilst singing along to Icona Pop, is a sight to behold.

This 5ft 5in, even-more-overly-upholstered heterosexual woman found herself compelled to join in, having also been captured by “the feeling on a summer day when you were gone”.

Our silly dancing ended, and, slightly breathless, we turned to the dining table, to see our daughter looking at us. I’m trying to think about how best to describe her expression; ‘underwhelmed’ doesn’t cover it, because there was no question of her approaching anything remotely resembling a whelm.

Our teenage daughter, who is sometimes so unlike most teenage girls, gave us a pitch perfect teenage look of disdain, and turned her head, to concentrate on her custard. We were reduced to helpless giggles. 

And this is the real story, isn't it? Here were her mum and dad, doing a ridiculous dance to a pop song she loves (the radio edit version, without any shits or bitches, obviously), but she just wasn’t interested, because she has Prader-Willi Syndrome, and food is the be-all and end-all, and she was having her pudding. Duh.

Video is Icona Pop - I Love It. This one has got the shits and bitches in it. I realise this because I've just played a snippet and my daughter has admonished me as she walked past. "Mum, when you are on YouTube, can you please put on the clean version of that song." That's me told.

Chilled

My daughter’s teacher had a quick chat with me yesterday, on a MOLF (Matter Of Life and Food)* 

*This is my own acronym. I’m not going to bother trademarking it.

MOLFs occur at school regularly, of course. Her special school unit has inventive and practical ways of learning, and some of these involve food, which is always an important Matter for someone who has Prader-Willi Syndrome and is consequently EFOF (Extremely Focused On Food)* 

*Note to self: enough of the acronyms. They're getting ruder.

One example of a school MOLF was the tasting of a selection of small pieces of fruit in science to learn about different flavours and how to describe them. Another involved putting small amounts of different puddings in a shot glass to create some form of dessert-based strata, to learn about layers in rock formation, or something. Sounds good, doesn’t it? It was all dull drawings of Oxbow lakes in my day...

Forewarned is forearmed, and staff are always careful to check with me about what my daughter is allowed to eat. She is on a strict low-fat diet and has a set amount of food each day at set times, so I need to know about any additional grub that may mean I need to make some menu adjustments.

Usually, anything they do consume is in small enough quantities for me to just make sure she has a particularly low-calorie afternoon snack to balance things out.

This latest MOLF is a little different, though: a trip out for lunch at Café Rouge. “We’re going to send a letter home, but we thought we’d pre-warn you,” her teacher explained. 

“That should be fine - she can just have that as her main meal of the day, and her packed lunch for tea, instead,” I said, making a mental note to keep reminding my daughter of this fact so that she will have the meal order switch-around clear in her head. “I’ll have a look at the menu...” I continued, but was interrupted by my excited girl.

“It’s OK, mum, I’ve already seen it, and I can have the pasta with tomato and courgette sauce, because that’s healthy and doesn’t have fries, and for afters I can have the fresh banana and chilled custard.”

I’ve just looked it up myself on the restaurant’s website. She’s right, you know. She got the  exact wording of the menu options she’d chosen. And picked the lowest of the low-fat choices herself. What could have been a long, drawn-out process of negotiation, explanation, compromise and mental preparation turned out to be pretty simple. 

Which left both her and me feeling like the custard: chilled. Dude.

Video is Squeeze - Cool For Cats

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. 

Codes

We have a couple of musical codes in our house.

Our daughter is very interested in the size of her dinner. Having Prader-Willi Syndrome means she is always hungry and is obsessed about food, so that moment when her meal is plonked down in front of her is important.

“Is it a big dinner?” she’ll ask, surveying the plate, suspiciously.

“Yes, sweetheart, it’s massive.” I reply.

Although those aren’t the actual words I use.

When she was little, and was getting her words mixed up and jumbled around, she kept saying “mathis” instead of “massive”. It wasn’t a huge leap from there.

“How big is my dinner, Mummy?”

“It’s not just big, darlin’, it’s JOHNNY MATHIS!”

Our entire family uses this phrase now. (Incidentally, putting a meal on a side plate and filling it up right to the edges makes it appear much more Johnny Mathis than having it sit forlornly in the middle of a large dinner plate).

We also have another piece of invented slang derived from musical origins - The Jonny Spencer. This refers to a particularly nuclear nappy-filling (used first for my daughter, later for my son, and now for my great-niece). It's a short form of The Jon Spencer Poos Explosion (do you see what we did there?).

Some people get sniffy about spoonerisms, puerile puns, or poo and bum jokes.

We thrive on 'em. *puts hand under armpit and makes a fart noise*. 

Video is Johnny Mathis & Deniece Williams - Too Much, Too Little, Too Late

Video is The Jon Spencer Blues Explosion - She Said

Panic

My daughter’s face was stricken.

I could see the panic starting in her toes and rising up through her body. I needed to stop it before it reached her head, at which time there would be NO REASONING WITH HER.

“It’s OK, we can sort it out. It’s not a problem. Everything will be fine. Don’t worry. Listen to what I’m saying: it’s all fine. It’s all right,” I insisted, trying to keep my voice firm, and get her to actually listen to what I was saying.

So what had happened to put her in a tailspin?

The Asda delivery truck had been. We were on a tight timescale to have Sunday roast ready in time, and they’d missed one vital item from our order: the chicken.

You need to understand how DISASTROUS this is. It’s why I don’t often order groceries online. Meals have to be precision-planned and to happen at set times in our household - it’s part of the regime needed to keep our hungry daughter happy and calm. There is no margin for error.

“Listen, listen. I ordered chicken breasts too, and they've brought them, so we can have those instead of the roast chicken,” I told my worried girl.

I had to repeat this four or five times before she accepted it. But she wasn’t happy. The menu and method had changed. Food that had been promised had not been delivered. 

And so, despite tucking in to a good, hearty meal, with breast fillets instead of roast chicken, (but piled up, as usual, with plenty of veg), we had the full scale “I’m so hungry!” routine in the evening. It doesn’t happen too often. But the minor mishap had lodged in her brain and food was all she could think of.

So, I’d just like to send a message to the very polite and friendly delivery driver, who whistled a jaunty little tune as he sauntered back to his lorry.

You’re an utter b**stard.

Video is Alan Partridge - Knowing Me, Knowing Yule clip. It's not actually a chicken, but it's how I felt.

Video is The Smiths - Panic

Toast

It’s the simple things that make it all right. The little things other people probably don’t think twice about.

Like our breakfast routine.

Having a daughter with Prader-Willi Syndrome, who’s always physically hungry but has to be on a strict diet, means you have to keep a close eye on her in the kitchen.

But being obsessed with food means she wants to help with the cooking and preparing of meals. So I've started letting her make her own breakfast.

This doesn’t sound amazing, but it is, it really is.

I open the cupboard and lift down the cereal boxes and line them up in a row. My daughter gets her bowl, a spoon and the milk. And makes herself a ‘mix-up’, which is her name for having a little bit of everything. 

I keep out of the way, until she presents me with her bowl for inspection. “Is that too much, Mum?” she asks, anxiously, worrying I’ll take some away. I’ve never had to, so far. She has a knack for judging just the right amount.

Then it’s time for toast. And, incredibly, she’ll stick a slice on for herself, and one for her brother. She’ll spread some marmite on hers, and some chocolate spread on his. And so far, she’s not even sneaked in a crafty lick of the knife. Her desperate need to feel grown-up and independent is so important to her she chooses not to give in to her hunger. Although she knows I'm watching, so I suppose it's like forcing yourself not to kick the centre forward right in front of the ref.

She’s very nearly a teenager. I don’t know how many other mums feel quite so happy at the sight of their awkward, spotty offspring sticking some bread in a toaster. Mostly I think they want to swear at them and their mates for making yet another loaf disappear. 

I bloody love it.

Video is Morecambe & Wise's Breakfast Sketch

Video is Streetband - Toast. This really is a terrible, terrible, song. But it's about toast. And features an unfeasibly young-looking Paul Young, bless him.

First

My daughter spent an amazingly exciting week away at camp, sleeping in a tent, going to Thorpe Park, swimming, having campfire sing-songs, and even caving. So what was her answer when I asked her what the “best bit” of her trip was?

“Spag bol. We had spag bol, Mum.”

Similarly, when she went to a pop concert at Wembley Arena with the Guides, and saw JLS and a host of other young chart-botherers, what was the highlight for her, when quizzed? 
“That chicken pasta meal you packed for me, Mum.”

Our recent holiday on The Isle Of Wight? 

“The sea food platter”.

Can you see a pattern emerging here?

Today, we were round my Mum and Dad's. My husband was working, so didn't know anything about a little gift 'Nanna' had given my daughter: a signed photo of young Arsenal and England star Jack Wilshere, sorted out for my little Gooner by a friend of a friend.  (By the way, my husband, despite being a Spurs fan, manages manfully to curtail his instinctive hatred of the Arsenal when it comes to my daughter's love for them.)

When he arrived back home and settled down for a catch-up chat with his favourite girl, and asked her if anything good had happened today, her face lit up like a beacon. "Ah, bless," I thought to myself. "She's so excited about that picture, she can't wait to tell her Dad!"

Grinning from ear to ear, she looked up at him, her eyes shining.

"We had a LOVELY lasagne."

Now I enjoy a meal as much as the next chubster. But for people with Prader-Willi Syndrome, food is such an all-encompassing force in their lives that it really is their first, their last, their everything.

(Cue Barry:)