Tuesday, March 22, 2011

Prader-Willi Syndrome questions, #7: What has been the biggest adjustment?

Q. What has been the biggest adjustment for your family, living with your daughter's diagnosis?  What has been easier/harder than you expected?

A. I think my answers to these questions change, somewhat, as time goes by.  S is only 7, so there are parts of PWS which we have not had to tackle yet!  And I am trying to think in general terms here...I'm "wordy" to start with, and PWS is a complex syndrome which affects each child and family a little differently.

I think the biggest adjustment has been, simply, adjusting to the idea that S has special needs!  This has changed who we are as parents, because we have an extra level of care we need to provide for S.  We can't just "coast" with her - and by that I mean, we will never be able to assume much, about her future.  For our older daughter, who does not have special needs, B and I can assume lots of things: that she'll be able to make friends with her peers, that she'll be able to finish high school, go to college, find a job which will support her without the help of state-run programs, move out into her own place, maintain a 'normal' relationship with boyfriend, and if she chooses, to eventually get married and have children. (And yes, I know we can all think of situations, among family/friends, where the "normal" kids in the family have not been able to do these things.  But, I think generally, most parents assume their kids will do these things, and in most cases, their assumptions/expectations for their kids are fulfilled.)

S, on the other hand, will never be completely independent...I do have hope that research will discover things to help our children!  But, for now, I am going on the assumption that S will always need some kind of supervision.  This is neither good nor bad - it is, however, a reality to which we've had to adjust, as parents.

How we handle food issues, and how we even think about food, has been another adjustment!  I think one of the most useful bits of advice to give to parents of newly-diagnosed children, is this: "start paying attention to the nutrition labels on every single bit of packaged food you buy, and buy a book which gives calorie counts for fresh foods"!  The dietitian and the endocrinologist we see with S told us when we needed to really start counting her calories - and reading the nutrition labels for the calories-per-serving (among other info) was really enlightening.  I was shocked to learn that there are over 100 calories per 1/4 cup of raisins...RAISINS!  Do you know how often little kids eat raisins or dried fruit?  I think because of the concentrated sugar, dried fruit is actually pretty high in calories.  So we quickly cut that out of S's diet.  We have made lots of other changes; we use Splenda although I've never been crazy about artificial sweeteners, we make good and constant use of measuring cups to make sure we're not giving S too much, things like that. 

I know I have thought more about "food" in the past 7 years, than I ever expected.  I have also become MUCH more aware of how ever-present food is in our society here in the states (maybe in other countries too, but I'm not well-travelled!).  It is EVERYWHERE - ads about food everywhere you look - on buses, in magazines, on the radio, in the coupons we get in the junk mail. There are whole tv channels about cooking food.  School fundraisers, generally, revolve around the sale of some food item.  Classroom parties are, generally, junkfood-fests.  Although teachers are getting away from this a bit, in many classrooms 'good' students are still rewarded with food.  Want to show someone you love them?  Give them a food-based gift.  Halloween/Easter/Thanksgiving/Christmas?  Holidays which for most people would not be quite the same without the food element.  So, figuring out how to navigate through all of this, and still keep S healthy, has been a huge challenge, and will continue to be one.

I could go on, but I'll stop here.  Thanks for reading!


Terry Guinn said...

Great post Jen. It is amazing what you learn about food, food marketing and food habits... When a life depends on it. It makes you realize that it is not just one life you are saving with all of this new found knowledge and experience.

Mamarazzi~of~4 said...

Well said! I also think one of the more difficult aspects of this syndrome, is how much "outsiders" do not understand about it. Even people that KNOW my child has this, will still, trying to be polite, offer him food. It's somewhat easier to maintain our way of doing things in the comfort of our own home, but once we're out in public, that's not always the case.

The New Model Housewife said...

Great post. I never thought about how present food advertising is, but you are right.

Rachel said...

Thanks for another informative post! I love learning more about your experience with PWS!