Here it is, Sunday early afternoon, and I hear, "Is someone coming down for lunch, or are we just not eating today?" It's my daughter, the one with PWS. I know I won't be able to finish this blog until she's had lunch... so...
Later: This week has been a little tiring insomuch as food has been even higher on the list of priorities. We've had a wedding and a baptism to attend and, of course, this is always around food in one way or another. I remember when she was very little, before she was diagnosed, we went to Church one Sunday, and I took her up to Communion whereupon she thrust out her hand to the Vicar and demanded to be fed, "I want bread! I want bread!". Unfortunately, at the same time, she upset the chalice of red wine all down his white cassock. I didn't know quite where to put myself and quickly carried her down the aisle to our seat, with her demanding very loudly all the way back, "I want bread! I want bread!" I don't think it went down all that well with either the Vicar or the congregation.
Trying to avoid food issues is a huge struggle for most of us: parents, caregivers, family or friends - whoever the person with PWS is with, and it is quite possibly the most tyrannical issue to deal with. Society demands that food is a natural part of socialising. As our sons/daughters get older, they know this and adapt their tactics accordingly... they know that in a crowd of people, parents are less likely to refuse them food as the thought of a socially embarrassing outburst is not what they want. My daughter, particularly. What's more, she's extremely adept at manoeuvering her way out of sight, and picking her times when I'm deep in conversation. I find social events a huge trial and would rather stay home than face the test!
Last week as we were struggling to reach 35 lengths (walking) up and down the pool, the chief topic of conversation was, yes, food. It's all about what she wants me to buy, whether I have this, or that on the grocery list, when I'm going to get it, what looks as though it's about to run out etc. Whenever she comes shopping with me, and this is something I do try to avoid if at all possible, I notice that she always puts two of whatever into the shopping trolly. Two packets of this, two packets of that. I always take one out, saying we won't starve and the car won't break down, so we can always come back. But she seems to harbour this inate fear of running out of food and won't stop her habit of storing. She also has a cat which is here with us at the moment - that cat has such a backup of food that I swear we could feed all feral cats within several miles.
I asked her the other day whether she felt full after her meal. She said she did. She knows the difference between feeling hungry and feeling full, or even just feeling ok. She can even hold off and wait for a meal if she's busy doing something else. Once all the food has been cleared away and cupboards locked, she doesn't food-seek or ask for food until she judges it time for her meals. But she is a fully-fledged opportunist and should any opportunity for accessing food arise, she will take it. So, it's always a situation of being 'on guard', locks secured, guests warned, and situations scanned for any weak spots.
I know it will never go away and I know I will never hear the truth about what happened to the packet of biscuits left out on the bench, and I know there will still be slip-ups with who's got the key, and I realise I will never get the better of the social situations either, but it's amazing how quickly you learn to to use those eyes in the back of your head, practice your own sleight of hand, and to lie, yes, outright bareface lie, about things to do with food.
Later: This week has been a little tiring insomuch as food has been even higher on the list of priorities. We've had a wedding and a baptism to attend and, of course, this is always around food in one way or another. I remember when she was very little, before she was diagnosed, we went to Church one Sunday, and I took her up to Communion whereupon she thrust out her hand to the Vicar and demanded to be fed, "I want bread! I want bread!". Unfortunately, at the same time, she upset the chalice of red wine all down his white cassock. I didn't know quite where to put myself and quickly carried her down the aisle to our seat, with her demanding very loudly all the way back, "I want bread! I want bread!" I don't think it went down all that well with either the Vicar or the congregation.
Trying to avoid food issues is a huge struggle for most of us: parents, caregivers, family or friends - whoever the person with PWS is with, and it is quite possibly the most tyrannical issue to deal with. Society demands that food is a natural part of socialising. As our sons/daughters get older, they know this and adapt their tactics accordingly... they know that in a crowd of people, parents are less likely to refuse them food as the thought of a socially embarrassing outburst is not what they want. My daughter, particularly. What's more, she's extremely adept at manoeuvering her way out of sight, and picking her times when I'm deep in conversation. I find social events a huge trial and would rather stay home than face the test!
Last week as we were struggling to reach 35 lengths (walking) up and down the pool, the chief topic of conversation was, yes, food. It's all about what she wants me to buy, whether I have this, or that on the grocery list, when I'm going to get it, what looks as though it's about to run out etc. Whenever she comes shopping with me, and this is something I do try to avoid if at all possible, I notice that she always puts two of whatever into the shopping trolly. Two packets of this, two packets of that. I always take one out, saying we won't starve and the car won't break down, so we can always come back. But she seems to harbour this inate fear of running out of food and won't stop her habit of storing. She also has a cat which is here with us at the moment - that cat has such a backup of food that I swear we could feed all feral cats within several miles.
I asked her the other day whether she felt full after her meal. She said she did. She knows the difference between feeling hungry and feeling full, or even just feeling ok. She can even hold off and wait for a meal if she's busy doing something else. Once all the food has been cleared away and cupboards locked, she doesn't food-seek or ask for food until she judges it time for her meals. But she is a fully-fledged opportunist and should any opportunity for accessing food arise, she will take it. So, it's always a situation of being 'on guard', locks secured, guests warned, and situations scanned for any weak spots.
I know it will never go away and I know I will never hear the truth about what happened to the packet of biscuits left out on the bench, and I know there will still be slip-ups with who's got the key, and I realise I will never get the better of the social situations either, but it's amazing how quickly you learn to to use those eyes in the back of your head, practice your own sleight of hand, and to lie, yes, outright bareface lie, about things to do with food.
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