Tuesday, 20 May 2014


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

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