Saturday, May 10, 2014

PWS Awareness Day 10: Counting Cookies*

Have you ever noticed how pervasive food is in our culture? I never really paid attention until Oscar was born with PWS and its signature insatiable appetite and caloric restrictions.  Now I see food everywhere. There are the obvious things -- every birthday, soccer game, or five-minute meeting requires food.  Over time we've encountered lollipops at the barber shop, tootsie rolls at the video store, mints at the dry cleaners.  Surprise Halloween treats at Ruby's preschool at the beginning of October.  Ice cream in Abe's 6th grade class for returning signed forms.  Random people on the street have offered my kids cookies.  And finally the more subtle but still distracting references -- the seemingly innocuous cake in the chapter book, candy canes in the preschool workbook, endless tv commercials advertising humongous messy hamburgers. 

When Oscar was in preschool I did my best to remove the food references from his environment. We tried not to sing "Who stole the cookies from the cookie jar", for example.  He perseverated over anything involving food, especially those toy kitchens with the plastic delicacies. Rubbery chocolate chip cookies, pink-iced cakes, miniature fries...all so alluring to a preschooler with PWS who had never eaten any of those items. He was fascinated and couldn't concentrate on anything else when food (pretend or real) was nearby.  Teachers quickly replaced those play kitchens with pretend veterinarian offices, rainforests, and post offices.

Now, at age 13, Oscar continues to be pretty focused on food.  And while he frequently demonstrates sneaky behavior (with food and other items) he's not routinely stealing. Not yet, I remind myself often.  Oscar's pre-occupation with food is not something we can expect to improve, and will almost definitely worsen.

We have an elaborate "food security" plan that we follow that helps alleviate anxiety and behavior issues that arise from uncertainty.  In short, Oscar gets only the food we give him, when we give it to him.  It's the No Hope-No Doubt plan.  No hope for more food. No doubt he will get what he needs. We follow a schedule of breakfast, snack, lunch, dinner so he is always assured of his next meal.  We have locks on the cabinets and eventually the fridge will be locked too.  We keep him out of the kitchen when we are preparing food. It helps that our kitchen is tiny and there is no room for food-gazers.

Several years ago, back in elementary school, one of Oscar's teacher asked me how we did it.  She knew we kept food out of the environment -- he'd been at the school for 3+ years at that point and they got it.  No extra food, not even for birthdays or holidays.  But that day she asked if we also screened every book he read.  He'd been reading one book at school that had a list of food in it, and every time she checked Oscar was reading that same page again, and again, and again. I was grateful she picked up on it, and even more grateful that she helped him smoothly transition to another book. Knowing how and when to interrupt his perseverative tendencies is a finely honed skill.

But, later that week, the math homework reminded me how impossible it is to police the food references. The food yes.  We absolutely police the food and make sure that Oscar is always in a food secure environment.  But those references are impossible.

Here are the math word problems (photocopied from a national math program):

1.  If you have 7 cookies and give 3 to your friend how many do you have left?
2.  If you have two cookies and your sister has 18, how many do you need to have the same number of cookies as your sister?

EIGHTEEN COOKIES? Who needs 18 cookies? What about buttons, or pennies?

(I just laughed. Sometimes that is all you can do.)

And, because pictures are fun and far more interesting than long blog posts about food security, here are some ridiculously cute photos of Oscar swimming with dolphins, taken around the time I originally wrote this post.  

*10/2009 post, somewhat edited and updated.


  1. Wow, I am learning so much, and yes, what's up with all those food references in textbooks and homework!? Happy Mother's Day to an amazing mom.
    And those photos are ADORABLE!

    1. Thanks Joanne! Food is just easy -- I even struggle with alternatives, especially with fractions!

  2. So incredible the things you take for granted when it isn't a problem for you. You are doing an AMAZING job, Mary, and I have never heard you moan or complain once! Gorgeous piccies. (Please turn off the Capcha!!)

    1. Thanks Claire! There are definitely times when it is difficult. But I'm no longer expecting or longing for it to be different, and that helps a lot.

  3. I probably read this back when you first posted it, and it stuck with me. I have written for educational publishers for years, and since I read this I've tried to avoid using food references or activities when something else would work just as well.

    1. Sara -- I am so touched by this!! Thank you from me, and from all the other parents of kids with PWS!

  4. What you struggle with boggles my mind --

    And those photos are outstanding!

  5. I can easily say the same to you. We just do what we need to do, right? Speaking of which, I'm thinking of channeling you and doing a few "How We Do It" posts. Yours are always so poignant and beautifully written and I always learn so much.