The "food life" of the PWS* parent

[*PWS = Prader-Willi Syndrome]

The topic sometimes comes up, among PWS parents, of "how have your/your family's eating habits changed since your child was diagnosed with PWS?".  Because Prader-Willi Syndrome has almost everything to do with the scheduled consumption of food by one's child, and the calorie-count of that food, it is often a standard consequence that the eating/food preparation habits of everyone in the household are affected, both for better and for worse.  Some parents are able to change their life 100% with the entrance of the PWS diagnosis, and they devote all of their time to becoming nutrition and supplement experts.  Most parents, though, are doing the best they can, keeping their child-with-PWS as healthy and slim as they can while muddling through as far as feeding the rest of the family.  "Food" and its preparation becomes a source of questioning and recalculating of eating habits that have been in practice for many years before the entrance of the PWS diagnosis. 
Take me, for example.

Like a good number of PWS parents, I sneak snacks.  I eat stuff I shouldn't, when I know Sophie won't see me.  Eating in the late hours of the day when she is definitely in bed is now a bad habit of mine.  I sometimes eat when I'm not at all hungry, because if I don't, I know that I'll become hungry in a moment when Sophie should not be eating, and to eat in front of her at that time would be cruel.

Then there is the "recipe collection".  I have probably 100 back issues of food-based magazines; "Cooking Light", "Everyday Food", to name a few.  There are several stacks of cookbooks on various shelves around the house.  I have a binder bursting with several hundred recipes clipped from magazines and printed off from the internet.

But...do I actually "cook", anymore?  As in, follow a recipe, make something "from scratch", spend any prolonged time in the kitchen?

Not really, for various PWS-related reasons. 

Any extra time spent in the kitchen, when Sophie is home, in problematic.  She likes to hang out in the kitchen and sometimes wants to help me, even if what I'm making is really simple.  So then I worry, should she even be IN the kitchen at all?  If she's watching me warm this up or make that, will she at some point sneak into the kitchen and try to make it herself (because I am ALWAYS telling her that this or that food item, if eaten without cooking it first, will make her very very sick - so as to somehow deter her from eating raw food product.  Except then, will she just use her clever brain, take the food anyway, and try to cook it herself??).  There is also the concern that, if something is cooking for a few hours and sending tantalizing smells all through the house, does that bother Sophie and cause her added stress?  Do I open all the windows to decrease the smells?  Should I just not cook or bake much at all?

And then, with all these cookbooks and food magazines and clipped recipes, of course it is now mandatory to consider the calorie-count-per-serving for whatever recipe. Sophie is eight years old now, and with the passing years I have kind of lost my desire to make much of anything - there is no longer any justification for making a recipe "just because it tastes or looks good" or "just because it was a comfort food when I was a kid", if one serving equals 200, 300, 400+ calories.  Certainly Sophie's portion can be adjusted so that she can at least have some, and the rest of her meal would be suitably lightened up.  That isn't hard to do, and I have certainly done that on occasions when it has been necessary.  It gets tiring and depressing, though, to approach every recipe with that precaution in mind.  Really, the more recipes I read, I start to question why any recipe, for any main dish, side dish, dessert, whatever, needs to be made with full-fat or full-calorie ingredients.  If the population of the U.S. is in the midst of an obesity epidemic, then why does any company or chef or food magazine or cookbook author produce recipes with seemingly no regard for the calorie-count-per-serving?  I have looked at recipes where the count is 600 calories-per-serving, and the serving size is one cup.  Now, obviously I am not going to make that particular recipe, as that is not healthy for anyone in my house let alone Sophie, plus her portion size for such a recipe would be so minute that it wouldn't even be worth it to put any on her plate.  But even though I know right away that I won't be making that recipe, I just have to wonder why anyone would make that recipe.  Why put your health at risk for the sake of that plateful of "whatever"?  Is it worth it?  Why spend the money on the ingredients to make something which, even as it tastes good, is increasing your weight or your risk of heart disease?  Why....

And on, and on....all these questions from looking at just one recipe. 

Looking at food magazines and cookbooks etc etc is fraught with conflict, questions, self-doubt and second-guessing, anymore.  I know of families where the entire family has gone vegetarian/vegan/gluten-free/sugar-free/carb-free/all-or-some-of-the-above, as a result of the PWS diagnosis.  One family switched to juiced-everything, and says that not only has this helped their child-with-PWS, the whole family feels so much healthier.  It seems inevitable that with the PWS diagnosis, simply walking into one's kitchen or eating anything at all, is an action which is so much less clear-cut than for the "typical" person or family.  Food consumption becomes a guilty pleasure, or a hoped-for cure-all for your child's diagnosis, or it's just a every-two-hour-chore with no joy in it at all.  I watch cooking shows sometimes and drool, not just because of what is being cooked but because of the person's freedom to cook whatever, without having to agonize over the calories and ingredients of the recipe.  The people on the cooking show actually enjoy what they are doing!  I'd like to get back to that, somehow.  I'd like to be able to cook and bake in my kitchen without feeling like I have to do it in the middle of the night or only when Sophie is at school, so as not to cause her any extra distress.

Well, off to figure out what to make for dinner.... :-).

Later,
Jen

My own eating habits? ummmmm....

In my post from yesterday I did a little ranting about food issues, specifically about parents who dislike the fact that our gradeschool has a new policy about providing healthy snacks/treats for birthdays and holiday parties.

But, can I just say, that my own eating habits have gone down the toilet since I've had kids??  And that they've probably gotten worse since the entrance of Prader-Willi Syndrome into our lives?

So really, I probably shouldn't be very judgemental of these other parents who are upset that they can't provide junkfood for their child's classroom, because God knows I make poor eating choices for myself all day long.  Especially after my kids are in bed, because then I can eat whatever I choose without feeling guilty, or having to 'hide' it from S.    That has been a consequence of the PWS diagnosis:  it has definitely influenced what foods I feel I am entitled to eat, since I feel I sort of  'deprive myself' all day long for S's sake.  It's complicated, and of course I may very well have gotten to this point even without having to adjust to PWS. 

I guess when it comes to this subject of what kinds of snacks or treats our kids eat at school, in the context of school parties especially, I am perfectly okay with a school district saying "enough already" and placing some guidelines about what parents can provide.  I've been in K's classroom enough times, and seen what kinds of food they are given to eat (quickly) before getting ready to go home, to dread these scenarios for S.
 
Because what am I supposed to suggest as alternatives for her, when these situations come up next year?  Keep her out of school that day?  Find some way for her to not be in the classroom for the eating part of the day?  Pick her up early, and make it obvious to her and everyone else that she's missing part of the activities? This is the very, very fine line that PWS parents have to walk:  to what extent do you allow the syndrome to influence the mainstreaming of your child's education?  I want S to have an educational experience that puts her with the other students as much as possible - but not if that puts her in an unsafe situation, where she eats foods that cause her to gain two pounds in one day.  And not if being around that kind of junkfood causes her so much anxiety that the day isn't fun for her anyway.  Last Friday in her classroom, they did do some Halloween-type things, and she wore her costume to school (I have to try and convince her to pick a non-dress costume next year - I was having waves of anxiety, thinking about her going up and down the stairs with that thing on!).  But just the change in the regular routine was enough to unsettle her, and I could tell she was out of sorts when I met up with her after the little costume parade they had.  I'm glad she is able to participate in these kinds of situations...but that's now, when the "Extreme Junkfood" school parties haven't even started yet.

As for me and my poor eating habits...tonight I've had ice cream, and now I will have to exert some extreme self-control to keep out of the Halloween candy.  S. does still go trick-or-treating, only because a)she's cognitively able to want to participate in the whole thing, and b) she generally forgets about all the candy once I've put it out of sight.  I, however, need to stay out of the candy...eating this late in the day is especially bad!

JB

School Parties without the junkfood??? No way!

Our school district here has, starting with the 2009-2010 school year, instituted a healthy-food policy regarding the treats brought in for birthdays and school parties (Halloween, Holiday, Valentine's Day, etc.).  There's probably an actual title for this policy, but I can't recall it at the moment. 

You would think someone had demanded that parents supply only brussels sprouts for parties, the way they have reacted to this policy.  I happened to be in my older daughter's classroom on Friday, helping out with their Halloween party, and the other moms and I got to talking about this new policy.  Their general feeling was that they were not in favor of it, and not only did they express some general disappointment at the "healthy" snacks (bagged popcorn, pretzels - hardly brussels sprouts) that had been provided, one room mom even chose to go against the policy and bring in chocolate cupcakes with the requisite gooey frosting.  I brought in some juice boxes (which, in my opinion, are probably of less nutritional value than the home-made cupcakes!).

Now, let me explain where I am coming from with my take on this new policy.  Over the past 5+ years, since Sophie's diagnosis of Prader-Willi Syndrome, my feelings towards food in general - any food, not just junkfood - have changed.  I have never spent so much time thinking about food, and the calories in various types/quantities of food, than I have in the last five years.  The PWS diagnosis demands that B. and I, as S's caregivers, pay strict attention to every calorie of every bite of food/drink of anything that goes in her mouth, right down to the T.ums she takes with every meal.  Granted, this puts us as parents into the "extreme" end of vigilance about what our kids eat.  On my part, I grew up in a lower-middle-class, large family - the youngest in a family of 10 children with Depression-era parents who, because of necessity and their own backgrounds, were not able or willing to feed us with mountains of junkfood.  We didn't ever drink pop.  All of our dinners were home-made, and if we had sweets it was home-made cookies.  We almost never went out to eat.  So, when I had my own children, I too was not (and still am not) into buying lots of pop/junkfood/candy/chips etc.  Not that we never have those things - they just aren't considered the main food group in our house.  As a matter of fact, I personally have grown rather tired of the whole concept of food in general, both because of PWS and because I am quite tired of spending so much of my time either shopping for food, or cooking it, or cleaning up after the eating of it!!  I often have the thought that maybe someday, humans will evolve to the point where we just drink protein shakes all day, or take some kind of Super-Vitamin-Pill, and that's our nutrition for the day.  Think how much time, and perhaps money, we would save.  The act of sustaining human life would become simply a 10-second-routine, a brief moment a few times a day, emptied of all of its emotional and psychological baggage.  Hard to stand in front of a frig eating half of a chocolate cake, when there is no frig, and no need for a chocolate cake.

Yeah, I know.  Sounds like a sci-fi novel.  And even I would miss the pleasure of having a piece of a good chocolate cake with ganache icing on it!

But anyway, I guess my point is that PWS has shown me how to place MUCH less importance on food.  In our house, food is absolutely never used as a reward.  Never.  We just can't do things this way, not with S. and also not with K.  The thing is, I don't think K or S will suffer at all, or have a miserable childhood, as a result!  I was never big into the food-as-a-reward thing even before S. came along - I'd rather buy my kids a book or a new box of crayons, anyway.  It doesn't bother me one bit that my kids hopefully won't be stuffing themselves with junk at school parties, or coming home with a bag full of candy because it was someone's birthday.  In talking with those moms on Friday, they commented that part of their dislike of this new policy is that it's a bit hypocritical on the school district's part, given that the lunches served in the cafeteria every day are not healthy at all.  In that case, I say, pack your child's lunch.  Don't even give your child the option to use their lunch-money-account to buy ice-cream sandwhiches!  Yes it's a chore to pack lunches, but then the parent has control over what their child is eating.  K. takes the same thing for lunch every day, and she's fine with it, and there really isn't any question in my mind as to what she's having for lunch.  As far as the party in classroom on Friday, well, I didn't hear ANY of the kids complaining about the pretzels, or the popcorn, or the jello jigglers!!  I heard more complaining from the parents!  Personally I think the kids are just excited that they get to wear their costumes and do something different with their afternoon at school....and aren't they going to go trick-or-treating and collect bags of candy anyway???

Sheesh.

JB