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.