One of the most critical aspects of raising a child with PWS is “locking up" the food. Whether locking is just figurative – with a food security plan and no hope of acquiring extra food beyond what’s planned – or also literal – chains looped through the doors of the refrigerator, padlocks on the cabinets, keyed access to the kitchen – it relieves the anxiety and allows the person with PWS to function more calmly and at a higher level. Consider what it would be like to learn multiplication or discuss plot and character traits if your mind was consumed with the possibility of obtaining the one thing you couldn’t stop thinking about.
For Oscar, though, and I suspect many with PWS, lack of satiety extends beyond food to other items and experiences.
Last summer, we had to "lock up" the money too. Oscar had become obsessed with it. He talked constantly about ways to earn more, about how much he had. Like food, "enough was never enough". He woke in the middle of the night
to count the coins he kept in the back of his sock drawer. He asked daily to check his bank
balance and quizzed me about interest rates. He snuck onto the computer and googled conversion rates for his foreign coins. We started keeping his
wallet on a high shelf, but caught him reaching up to grab it so he could re-count
his five dollar bills. His desk was covered with papers filled with scrawled
sums – the adding up of the coins, the wallet money, his bank balance. He was anxious, perseverating,
and prone to meltdowns. Thoughts of money
were consuming him and jeopardizing his behavior, much like what happens when
food security is not in place. The few rules we placed on counting and talking about money weren't effective. We needed more.
"Here's the plan," I told him one afternoon, as he lay facedown on his bed crying. He was panicking again about the number of five dollar bills in his wallet, worried he had lost some. But he stopped sobbing to listen.
"It's all going into the bank," I said. "All of it. Even the coins. We can check your balance once a week, on Sunday night."
He climbed out of bed and wrapped his stick-thin arms around my waist. He buried his head in my chest. "Thank you Mommy," he said, relief flooding his limbs.
Oscar stopped obsessing about money that day. With no more opportunities to count it, no possibility of losing it, but, importantly, the assurance we could still talk about it once a week, his mind was freed. On Sunday nights I transfer his allowance into his account along with any additional money he might have received from a birthday or a cat-sitting gig. He writes down his balance, and then he goes off...to listen to pop music on his ipod, play monopoly with Ruby, chat with his girlfriend. (Or, honestly, to talk about the A's with Paul.)
Here are a few pictures of Oscar hard at work at a cat-sitting job.