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

List

I stumbled across this list yesterday*. It was created by a young man with Prader-Willi Syndrome who had a New Year’s Wish ‘for people to know what it feels like to have PWS’.

When asked how he could get his wish, he said: “People could do some of the things that I feel every day, just for one day and maybe they would understand.”

It's a real eye-opener.

Here’s his list. If you like - and in the spirit of New Year's Resolutions -  you could pick one or two of the challenges to undertake. Just for a day. See how you cope. And then think about living your life like this. Every day.

1. In the summer, turn up the heat and wear extra clothing or in the winter, wear very little clothing and turn the heat down.

2. Only eat ½ of your meal, breakfast , lunch or dinner and leave the table hungry.

3. Go to an office or school party with all the extra food and goodies before eating lunch and DO NOT EAT ANYTHING! 

4. Put cookies, cupcakes, or other goodies that you like on the counter and be sure to walk by them every time you go in the room but you can NOT eat any!

5. When you are really hungry watch someone else eat something that you LOVE, knowing you cannot have it.

6. Do something out of the ordinary or different in public and look around to see someone stare, laugh or tease you because you are different. 

7. Lock your cabinets or refrigerators and give someone else the key. Tell them to only let you eat when it is meal time or time for a snack. DO NOT eat in between meals. 

8. Restrict your calories to only 1100 calories per day including all meals and snacks. Count all calories including drinks. ONLY eat 1100 calories!

9. Drink only sugar free, diet drinks or water do not drink liquids that contain calories.

10. Never go into the kitchen, pantry or cabinets unsupervised. Only enter the kitchen or dining room if someone else is with you and can be watching what you are doing.

Video is Eels - Guest List

*The list came from an entry by Janis Tull Williams on the Prader-Willi Problem Solving And Solutions Exchange page on Facebook

Forget

I sometimes forget my daughter has it.

I sometimes snap at her when she asks me for the 10th time when tea is ready.

I sometimes fail to remember that she’s not just being impatient. She’s not just tired or bored (although if she is either of these things then the intensity of her chef-bothering increases).

Having Prader-Willi Syndrome means my daughter is hungry. Physically hungry. All the time.

I could tell you about the science, and the tiny missing stripe* on one tiny chromosome that causes this. (*Stripe may not be the accepted medical terminology here).

But all you need to know is that the little switch in my daughter’s brain that should click on to tell her she’s full up doesn’t work. 

(Incidentally, the same little switch in my brain seems to develop some kind of fault within 20 feet of a cake. It must be an as yet undiagnosed syndrome. If any scientists are out there, I’m perfectly willing to help with research. As long as I get to eat lots of cakes).

She really can’t help it. She’s not being greedy. And amazingly, for the most part, she doesn’t plague me all the time for food. When her days are structured, and she has her set meal and snack times (a rigid school timetable helps here), she probably begs for grub less often than my toddler, who I believe is starting a new world religion which involves worshipping at the altar of the biscuit tin and praying to a God made entirely of Custard Creams.

So although sometimes I do forget, I try really hard not to. I attempt - not always successfully - to keep a lid on my irritation if she does get stuck in a food loop.

Because when I imagine what it must feel like to always be hungry, my heart aches for her.

Video is Bob Marley - Them Belly Full