Ever since we watched The Polar Express (again) this year, Oscar has starting counting the dogs he sees each day with a tone that is reminiscent of Santa's when he shouts: The FIRST GIFT of CHRISTMAS! as he hands the young boy the jingle bell.
Whenever we leave the house, whether it be at 8am for that early morning OT appointment or not till late afternoon on one of those lazy winter break pajama days Oscar will call out: The FIRST DOG of the DAY! with the same joy and importance that Santa conveyed.
And then he keeps going...
"Mom, there's the FIFTH dog", "the 17th", etc. All day long. Every day.
Many years ago, when Oscar was only 20 months old, we attended a Prader-Willi conference in Utah. In my early hyper mode of trying to understand every nuance about PWS so I could be prepared for any possibility, I didn't shy away from the sessions geared toward families with older kids. In one such behavior session, the speaker emphasized that we can sometimes take advantage of our kids' behavioral traits, using them to our advantage. It sounded too easy, too optimistic, but another mom shared an anecdote about accidentally taking a wrong trail while hiking with her teenage son with PWS, extending the hike by several miles. While, if memory serves, exercise was very challenging for this kid, she got him to happily finish a very long hike by getting him going on his favorite topic: motorcycles. He talked about motorcycles for hours, but didn't complain about food or the long hike!
Listening to a kid perseverate about one subject for an excruciatingly long period of time, as some people with PWS are known to do, can be annoying and boring, especially when it is the same topic day after day. Some days I feel as though I am going to pull my hair out if I hear one more word on the topic du jour. And it's not just the perseveration, it's Oscar's complete inability to do anything else while perseverating. He can't get in the car and put his seatbelt on, get dressed for the day, or brush his teeth when he is perseverating. He follows me around chattering on, oblivious to my body language and everyone else's needs. Oscar will ramble on undeterred, even asking me questions, while Ruby shouts that she needs help in the bathroom or Abe is recounting a rare story from his day or while I'm trying to measure ingredients for a recipe so that we can eat dinner before bedtime. Truthfully, many times I have to tune him out, because otherwise I would probably have to run to the nearest window and scream and I don't think the neighbors would be too fond of that after a while.
Many families we know live with the constant perseveration about food. When is snack? What's for snack? Can I please have some more food now? I'm hunnnngry! Repeat.
Oscar doesn't do that very often, yet. He does perseverate about food, but in a different way. He'll talk for hours about the dairy farm he's going to have when he grows up and what vegetables he'll grow and whether to raise his cattle on grass or corn or some mix.
Oscar has a whole list of topics. Dogs are one, but thankfully that is mostly a counting thing with an occasional venture into how he is going to have dogs when he grows up and is in college.
Anyway, I was thinking about that mom and her son with PWS and that long hike today. I woke up feeling like we all needed to get outside and get some exercise together. All five of us. A rather lofty goal with our varying ages and abilities, but I remembered that there is a 2.7 mile paved loop around a local resevoir. We've done it before, though the kids were younger and even with jogging strollers and backpacks it was a struggle.
We decided to try anyway. I brought Ruby's bike but wasn't sure how we were going to keep Oscar going. Once we arrived, though, I realized it was going to work out just fine. Oscar shouted out "The FIRST DOG of the DAY!" before his feet hit the pavement. The promise of another dog (or two or three) around the next corner kept him going up and down the gentle hills, even jogging occasionally. Paul and Abe ran ahead a couple of miles and doubled back. I chased after Ruby on her bike and pushed her up some of the steeper hills. Oscar kept a steady, though slower pace, while he counted, but he never once complained. We all got exercise!
And Oscar counted 100 dogs. He saw the last one as we arrived back at the car. I don't think he'll ever tire of counting dogs. As I said to Paul, this could easily still work when he's fifteen.