Wednesday, May 21, 2014

PWS Awareness Day 21: Rigid Thinking

I peeked in on Oscar in the bathroom at 7:25 this morning.  He needed to leave for the van stop in ten minutes, and I wasn’t sure if he was even dressed. I’d asked him to shower, which always slows things down, and when I opened the door, he was standing in front of the mirror, still naked, dabbing his face with cleansing pads.

“Oskie, you just took a shower.  Remember, you don’t need to use those pads when you’ve already washed your face.”

We’ve been working on this for months.  This, and putting his Harry Potter book in the main compartment of his backpack, not a separate pocket, because that one extra zipper adds too much time. And only wetting his hands for one second before soaping up.  His current routine is this – turn on the faucet and run hands under water for twenty seconds. Turn off water, soap up until hands so white with lather he looks like he’s wearing mittens, then rinse for another twenty.  Drying requires removing the towel from the bar and slapping his hands back and forth across the terrycloth until they are completely dry.  This can take another twenty to thirty.  He doesn’t count the seconds, but I do when I am watching him.

In my less patient moments I intervene, wresting the soap from his hands, turning the water off, proclaiming his hands “dry enough” after one quick swipe. Some days he’ll roll with my brusque manner, other days this could trigger a meltdown. It’s a gamble.

Oscar is a rigid thinker.  Most people with PWS are.  He struggles with changing patterns once they are formed.  He needs to follow the steps of each task in the exact same order every time, and resists adjusting the routine, even when’s running behind.  Even when he’s late for a favored activity. 

So much of parenting Oscar is about trying to foster (or force) flexibility.  We explicitly teach him how to take faster showers by skipping some body parts when we're late, to erase only the part of the math problem that is incorrect, that he doesn't need to zip his jacket all the way to the top before he leaves the house.  That flannel-lined pants aren't appropriate for 70 degree days. That cleansing pads are unnecessary when he's just washed his face.   Some days he can make small adjustments, other days it's like trying to budge a boulder.

The rigidity demonstrated here?  All artwork, even hama bead creations, incorporates yellow and orange.  (I kinda like that though - yellowish-orange is his signature color.) 


  1. I swear I thought about this this morning at 6am when I was awake because the cat likes to talk at 6am and I am trying to use this as a reason to get up and get work done. It is so hard to change routines.

    1. I'm honestly not much better either at shifting routines, but Oscar doesn't have a blog and there is no "Mommy Awareness Month."

  2. I know how difficult all of this is, but I'm finding your stories fascinating. Thank you for sharing these details with us -- I hope these posts are getting wide readership.

  3. Thanks Elizabeth! It's been a fascinating exercise for me as well. I wish I could have approached it more systematically but I've enjoyed writing about what inspires me each day.