In an ideal world, my girl would be able to take part in food-centred activities without the need for forward planning. But it’s a Prader-Willi World we live in, and foody calls are needed, and appreciated.
Sunday, 28 June 2015
Foody
My phone rang. Some people get booty calls; I get foody calls.
It was my daughter’s teaching assistant, quizzing me about what menu items would be suitable for my girl to have with her classmates at an end of term pub lunch. (We had custard creams and squash at the school disco if we were lucky. This lot get a meal out - it’s not fair, I tell you, not fair).
It’s the kind of phone call I wish people didn’t have to make, and yet I love that they do.
In an ideal world, my girl would be able to take part in food-centred activities without the need for forward planning. But it’s a Prader-Willi World we live in, and foody calls are needed, and appreciated.
“The pub is doing a barbecue for us: we can get some low-fat meat if you like, and something she can have for dessert - you tell us,” the T.A. said.
I rattled off my girl’s barbie faves (Weight Watchers’ Cumberland Sausages, Asda spicy bean burgers, and ‘light’ (lower fat) ice cream.
“No problem,” was the reply.
Two words. Loaded with so much meaning. It wasn’t a problem. Because the school is on board with the importance of thinking ahead, and communicating with me about the potential meltdown minefield of food. They were going to sort, and even shop, to make sure my girl was included.
“They can all have the light ice cream and be the same,” the T.A. told me, warming the already toasty cockles of my heart, which got another blast of heat when I picked up my girl from school a few hours later.
“Mum, mummy, I made some excellent choices today, the teacher said - really excellent.”
“Oh, what was that about?”
“We had a list of things to choose from for when we go to the pub, we have to be independent and choose what we want but we have to choose the right things that we are allowed and we have to choose them ourselves, and I chose low fat sausages and a bun and a salad and low fat ice cream and fruit, and a tomato juice to drink, and they said I had made very excellent choices, and I did, didn’t I?”
You did. You had advance team help, but yeah, you really did.
Song is Brother Jack McDuff - Hot Barbecue
In an ideal world, my girl would be able to take part in food-centred activities without the need for forward planning. But it’s a Prader-Willi World we live in, and foody calls are needed, and appreciated.
Monday, 15 June 2015
Now
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Fascinating thing to the babies' left not pictured. |
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Friendships renewed. Post roll, obviously. |
Sunday, 7 June 2015
Unit
The Season has started. Forget dĂ©butantes coming out and flirting with chinless wonders at polo matches, races at Royal Ascot, and fancy balls. Nope, this is the PWS social season, and it’s more down to earth.
Over the next five weeks, we’re popping along to three events being organised in various parts of the country by parents, friends, and volunteers linked with the Prader-Willi Syndrome Association UK.
The first of this series of family get-togethers took place today in a London park.The Drake contingent was smaller than at first planned after I left my son at home due to him waking up in a thunderously foul mood (‘overtired’ after partying too hard yesterday). His dad, who this sentence could equally apply to, was also left behind and thus forced to deal with the ramifications of my executive decision that the day would be more peaceful and enjoyable if the girls legged it for the train on their own. I’m told he did stop crying, eventually. My son, that is.
We spotted a couple of blue PWSA UK T-shirts, my girl beaming because she was sporting one too. Introductions and re-introductions were made; my girl remembered names that I’d forgotten from last year. Then it was chatting time, as my daughter rambled on amiably, with the “people with PWS just like me”, including a sweet, nine-year-old girl who gave as good as she got in the Talking The Hind Legs Off A Donkey Stakes.
And within just a minute or so of meeting a new face - a 12-year-old boy - my girl was sprawled on a rug with him playing Deadly 60 Top Trumps, to his mum’s amazement. “He wouldn’t normally do that!” she exclaimed. “They definitely wouldn’t normally do that!” we both blurted out, when they were told it was picnic time and both said they wanted to finish the game first. (Although, to be more true to form, they had an almost instantaneous backtrack when they realised the import of what they’d just said and changed their story to: “Yeah, you’ve got the most, you’re the winner, where’s the food?”).
But it’s something I’ve seen many times, and yet is always just as special and astounding - PWS kids buddying up, easy with eachother, on eachother’s wavelength, belonging. Things that don’t happen so easily in ‘real’ life with ‘civilians’.
The Prader-Willi Army is an amazing unit.
Video is Danger Mouse & Daniele Luppi (feat. Norah Jones) - Season's Trees.
The first of this series of family get-togethers took place today in a London park.The Drake contingent was smaller than at first planned after I left my son at home due to him waking up in a thunderously foul mood (‘overtired’ after partying too hard yesterday). His dad, who this sentence could equally apply to, was also left behind and thus forced to deal with the ramifications of my executive decision that the day would be more peaceful and enjoyable if the girls legged it for the train on their own. I’m told he did stop crying, eventually. My son, that is.
Friday, 5 June 2015
Hola
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"I am haviing a lovely time on holiday in spain the weather is lovely in SPain I went to the beach and watch daniel on the Jet Ski I like eating my curry and my paella I went on a boat. I bought with Nanny money a dream catcher and a doll. I Had Chinese the over day. I am having spag bowl to night."
Man, my poker face is good.
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