Tuesday, October 20, 2009

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.  Now I see food everywhere. There are the obvious things, like every birthday, soccer game, or five minute meeting requires food.  We encounter lollipops at the barber shop and orthodontist, tootsie rolls at the video store, mints at the dry cleaners.  Surprise halloween treats at my daughter's school at the beginning of October.  Ice cream for returning signed forms in 6th grade.  Random people on the street offer 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 eventually replaced those play kitchens with pretend veterinarian offices and the like.

Oscar's still pretty focused on food, but it's not horrible. I do expect it to get worse. We have an elaborate "food security" plan that we follow.  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. No doubt he will get what he needs. We follow a rough schedule of breakfast, snack, lunch, snack, 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 kick 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.

Oscar's teacher asked me recently how we do it.  She knows we keep food out of the environment -- he's been at the school for 3+ years and boy do they get it.  No extra food, not even for birthdays or holidays.  It is so smooth at school that I hardly think about it.  But this week she asked if we also screen every book he reads.  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.

Last night's math homework gave me a good laugh though, and reminded me how impossible it is to police the food references. The food yes.  I absolutely police the food and make sure that Oscar is always in a food secure environment.  But oh those references...

Here are last night's 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?  What's wrong with acorns, or pennies?

Oscar got the first problem without hesitation but got stuck on the second. He was trying to use the grid that was provided to solve the problem, but misunderstood, and ran out of space. 

He finally came up with an answer, an answer I loved:  ZERO cookies.  For a moment, I dared to imagine his reasoning:

I need zero more cookies, Mom, because if you gave me two then that is the right amount for me. It doesn't matter that Ruby has 18. 

Or, better yet:

Zero, Mom! You know cookies aren't healthy for my body!

Of course he didn't say either of those things.  He was just confused.  I considered letting it go... letting him keep that answer at ZERO, but he persevered and figured it out. Sixteen cookies. He would need 16 more cookies to have the same number as his sister.

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


  1. After reading your post, I began to realize how hung up on food our culture really is!

    I admire your ability to get Oscar's school on board, as well as the way you manage to keep Oscar's focus from food! That cannot be an easy thing to do...

    Your post made me realize how much I take for granted when it comes to food, and how fortunate I am to manage my appetite (or not).

    Kudos to you for doing such a great job for Oscar and your family!

  2. PWS is just the weirdest, most amazing disorder and I am grateful that a writer as good as you is educating me about it. I can't imagine how difficult it all is -- and how deeply psychological what with the basic mother/child/eat/food thing as well as how our whole culture is basically centered around food. Yikes. Have you ever read Oliver Sacks? His essays on neurology are really so outstanding -- yours carry the same weight -- the lack of judgment, the observational quality to it. I'm so glad you're writing, Mary.

  3. I just found your blog and it's great!

    I agree about the food thing in our culture and the media -- it's all around us! Congrats on getting such an effective strategy in place (no hope, no doubt). It must be a constant challenge every time you step out the door.

    I look forward to hearing more about Oscar and your adventures. I hope you check the BLOOM blog out too.

    Cheers, Louise

  4. Thanks all, it really is such a strange disorder. When Oscar was diagnosed I thought it was a horrible joke.

    Lianna -- His school is incredible, but it was a tough road to get him there..along story I will write under a pseudonym someday.

    Elizabeth -- I haven't read Oliver Sacks but I looked up some of his work. Looks fascinating and I will HAVE to read his books. Thanks for the compliment!

    Louise -- I'm new to BLOOM and love it already. Thank you!