Wednesday, January 5, 2011

PWS questions

Hi all,

One thing I want to do with this blog, especially for friends/family/acquaintances who may be reading and who may have questions about Prader-Willi Syndrome and how we live with it, is answer some of those questions.  Or at least, provide answers to some of the questions which I think the general public might ask, if given the opportunity.  So here goes, question #1:

Q.  "Since S has PWS and, because of that you are supposed to be counting her calories and watching what she eats, why then do you still go to McDonald's or go out to eat?"

A.  Ah, yes.  The McDonald's question.  Well, I guess my first response is that, even though S does have PWS, and even though that does dictate a good deal of what and how I feed my family, PWS doesn't - and can't - control every single aspect of our lives.  Perhaps if S were and only child, as a family we would definitely live differently.  But, she is not an only child - we have two daughters, and K does not have any eating restrictions.  She doesn't even have any food allergies, and she doesn't have any weight problems.  In addition, she is a busy 6th-grader who, two evenings a week, takes a dance class at a studio which is at least 20 minutes away.  Because of that and the time at which her classes happen, the dinner choices on those two evenings are affected, whether I like it or not.  So my options on those two days are these: eat out (hence McD's for one of those days), or eat dinner at home at what I consider to be an insane hour (4:30), or pack some kind of "dinner" into a cooler and eat it at the dance studio. 

However, sometimes, even with the presence of PWS, parents have to make choices.  Because I am able to purchase a calorie-restricted meal for S at McD's, I choose to do that so that the hours surrounding our excursion to the dance studio don't turn into a huge production - which in and of itself would definitely "up the stress level" for myself and the girls.  I try to make life as simple as possible for all of us, while still attempting (for the most part, successfully) to keep S as healthy as possible.  (And please spare me the "McD's food is the least healthy food on the planet lecture".  Thanks.)  I have said this before: even with a PWS diagnosis, my family does not live in a vacuum where everything can be dictated by the vagaries of the syndrome.  Does S's health still take priority, when we are having a meal? Yes, indeed it does.  Do we still control her portions, and consistently remind her that we have to follow the rules when it comes to food?  Yes, indeed we do.  At the same time, I am required to find a livable middle road between one child who has food-based health concerns, and an older child who has none.  S's imperative is "when will we eat next, and what will it be?"  K's current imperative is living life as similar as possible to the way she sees her peers living it.  My current imperative is somehow find the livable center amongst the two of them, while maintaining my sanity.  Does this sometimes mean eating out, and as we do so making the healthieast choices we can for S? Yes.  Much as the PWS purists out there might disapprove, this is what we have found, that works for us.  Some families go completely vegan/vegetarian/glutein-free/low-carb/high protein, as soon as the PWS diagnosis enters their lives.  Some families completely stop going out to eat at all.  Some families swear off any and all foods that they consider "unhealthy". Whatever works for them is fine, and if their child/children are still well-cared for and healthy, and thriving, then they've made reasonable choices.  In our case, B and I chose to keep our lifestyle as even-keeled, and realistic, as possible - especially because we have two children. After all, it is possible that we won't be the only ones caring for S her whole life; and we ourselves don't live in a bubble.   

I guess the bottom line, in answering a question like this, is just as PWS manifests differently for every child diagnosed, so does that child's family adjust to and deal with it differently.  What works for us and for S, might not work for another child/family.  I know there are probably quite a few parents out there who might judge me quite harshly for how we deal with things.  But, it is what it is, and we do the best we can - and for all of our potential mistakes in this area, S seems to be doing just fine.



Unknown said...

Maybe one clear benefit of having McDonald's on such nights - even with the PWS circumstance - is that, ultimately, Sophie will be older, will inevitably be faced on her own with the prevalence of fast food choices, and will STILL live by the 'rules'. Isn't that what we all try to do as parents, anyway? We try from the start to be realistic about the challenges and choices kids will face as they get older, no matter what their particular issues are, and we realize that someday they will have to make choices on their own. Sophie is smart - she will not be fooled into thinking that there is no such thing as fast food, or cheeseburgers, or frosteez, or potato chips, just as another kid wont be fooled into thinking that there is no such thing as sex, or pot, or cigarettes. There's no point, in my view, to trying to set things in motion so that Sophie doesn't see McDonald's - it's there, and not going anywhere. Better by far to get her familiar - as you are - with how to make choices, and to know what the rules are, than to try to avoid fast food reality everywhere. So, there's my two cents, eh.

Janis said...

I agree with you Jen. We go to McDonald's every now and then, maybe once or twice a month. Try to stick to healthy choices on the menu; the yogurt parfait. It is much easier to stick to a healthy diet now since it is just Audrianna and me at home. It was a nightmare when the other children lived at home. They were always coming home with fast food and they wanted to eat "regular" food sometimes too. Plus eating healthy is very expensive. I am not sure I am getting across what I am trying to say but yes, we eat at Mickey D's once in a while, order in a veggie thin crust pizza sometimes, and splurge on special occasions.