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.
Today is the start of 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. If you’re a regular reader of this blog, you’ll know I need no encouragement on this front. (‘Shut the flippety flip up about PWS’ would be a harsher, but not totally uncalled for, tagline for me and my ramblings).
Today, the PWSA (UK) is talking about...new diagnosis.If you could meet yourself now, what message would you give yourself?
That’s an easy one. It’s to change a thought I had at the time, which I’m convinced is a thought all parents of PWS children have: “Why me?”
To be more precise, it’s “Why my child? Why has this happened to them?”, but boiled down and reduced, it’s essentially “Why me?”
There’s a John Boorman film called Hope And Glory, set in London during the Blitz, where the family are cowering inside during a bombing raid, and someone yells: “Oh, please, God! Not on us!”, and the teenage daughter screams: “Drop it on Mrs Evans, she’s a COW!” I could identify with that selfish, mean-spirited thought. (I didn’t have any specific cows in mind, though, honest. What do you take me for?)
Because in the beginning, in the shocking, frightening, moments when doctors pull the rug from under your feet and tell you your child is disabled, you feel unlucky. Desperately, horribly, unfairly unlucky.
It changes. One day, that thought isn’t there any more, or at least it only surfaces fleetingly, when you occasionally reach the end of your surprisingly long tether.
Once you understand more about the sheer number of things that can go off-plan when you’re talking about the incredibly complicated blueprint of a human being, once you meet other parents dealing with other syndromes affecting other children in other ways, once you see the challenges other parents with non-disabled kids can face, too, “Why me?” is sanded down, and re-chiselled in its place is a different phrase: “Why not me?”.
If it wasn’t me, I wouldn’t have my daughter. And life would not have been the same. It wouldn’t have been as good.
