Sunday, January 10, 2010

100 Dogs

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.


  1. I love this story. It's full of hope and is a wonderful example of adapting, flexibility, creative thinking and making a win-win situation out of what could be otherwise.

    It was also a fun story to read, because we have done the same thing on a walk, counting - not dogs, but starfish - on the beach. Over 200 one day in the spring, years ago! It's one of my cherished memories, wading and walking with the kids and Gregg, enjoying the various colors, types and sizes of the starfish. Thank you for sharing your story, and for reminding me of mine.

  2. I agree with Karen and am amazed at your patience and understanding and strength. PWS is so complex, it seems, and I thank you for explaining these things in such a brilliant way. I totally get your frustration and boredom and the relentlessness of it all -- when my boys want to play the Audi game in the car I just about want to die.

    I am wondering if you might compile some sort of book of essays about PWS -- is there anything like it out there?

  3. Wow! What a great story...turning a maddening trait into something wonderful. And I'm very impressed that you DON'T open the window and older son's incessant talking in just the average talkative eight-year-old way can make me feel that way!

  4. That is actually an amazing trait of PWS. I'm learning a lot from your writings, Mary.

    Funny enough, I was talking with Gabe's resource teacher and she has a cousin with PWS. She asked me if I had ever heard about it because it is not that well known. And I happily replied that I am learning.

    The resource teacher had mentioned that she receives emails from her cousin with countless questions. She answers her cousin, and asks a few of her own, which never get answered. Interesting, eh?

    Anyway, I loved this story of 100 dogs!

  5. Thank you for thinking of donating to Goodwill in Katie's memory, Mary. They do such good work with job training, and helping people who are either new to the U.S., or trying to get their lives on track after prison, etc. I really appreciate the way they see the worth in individuals, and help encourage them to grow. Blessings to you! I hope it will make your kids feel good to donate their outgrown things!

  6. Beautiful family story, Mary. I love how it comes back around to, "The promise of another dog...around the next corner kept him going up and down the gentle hills, even jogging occasionally." A pleasure to read.
    Thanks, Jennifer

  7. I'm in awe at the beauty of you spirit. I have not ever heard of PWS. Thank you for sharing. I hope I did not intrude on something private.

  8. Thanks all for your wonderful comments on this post. I'm really not patient -- I must stop painting myself so (or only telling the stories in which I muster a little.) Elizabeth you have me thinking...and welcome Angie! You are definitely not intruding.