Oscar's obsessed with his watch. I've posted here about his dangerous habit of walking across streets with his gaze fixed on the small blue digital face attached to his slender wrist. This summer I had to confiscate the darn thing during his educational therapy sessions because he was checking the time so frequently that he couldn't concentrate on his work. Today, when I picked him up from school at noon for his weekly OT appointment he looked at his watch, smiled and said,
"You're early. It's only 12:01. You don't usually get here till 12:05." He was talking as if he'd caught me in the act. Of what, I don't know.
He wants to know the exact time for everything -- what time will we leave for school, when will our friends arrive, how long does he have to spend on homework? It drives me a little nuts.
Our biggest issue with time, though, is around naps. Oscar still needs a nap -- he's exhausted after a long day at school where he works so hard physically, cognitively and socially to keep up. He rests every afternoon for 1.5 to 2 hours and if he misses that nap, or stays up too late, we see it almost immediately in his behavior. More meltdowns, less flexibility. Or he falls asleep. After a busy day and late night on Saturday, he just curled up on the couch and dozed off on Sunday morning while Abe and Ruby jumped on the trampoline and built Wedgit structures that inevitably crashed inches from his head. He'd shift or stretch but his eyes stayed closed.
As tired as Oscar gets, he resists the transition to nap. Every single day, as I'm tucking him in, he asks me, "How long?" I never answer with an exact time because I know that if I do he won't go to sleep. Instead he'll just obsessively check his watch until the appointed time and then pop out of his bedroom, pleased but unrested.
Every once in a while one of us will slip and say, as a way of coaxing him into his room, "C'mon Oscar, just a short nap." That one little word -- short -- can set off a 15 minute discussion of what that means exactly. Half-hour? Hour?
Today, as I was tucking his yellow down comforter around his narrow frame and straightening the hand-made quilt on top, Oscar hesitantly asked, "So, when can I get up?"
He knows that some days my patience is gone by tucking time. Some days I've already spent thirty minutes talking him through the pre-nap bathroom routine: sit down, no talking, wipe, flush, wash hands (rinse, soap, rinse, dry). Some days I've emptied and refilled the dishwasher, sponged off the table and counters, taken out the garbage, and thrown in a load of laundry and he's still in the bathroom.
Today was no different, but I was feeling patient.
"Oh, I'll know when you're done napping," I replied with my special all-knowing smile.
"You will?" he asked, smiling back, no doubt relieved at my light response.
"Oh yes", I joked, "I peek in on you when you're sleeping and I can tell. You're like a turkey in the oven with one of those temperature thingies that pops up when it's done cooking."
"I am? Really?" he asked, giggles erupting around the edges of his red lips. I know he was trying to tell if I was teasing him. He was also enjoying the turkey metaphor, even though he's never seen one of those thermometers. (I so rarely reference food when I'm talking to him that the reference alone is worth giggling about.)
He ended up sleeping for two solid hours.
At dinner tonight I challenged him to not look at his watch. Every time he did I would yell "AHA!" and he would laugh and bury his wrist back in his lap. It quickly became a game, with Abe, Ruby and me all baiting him with questions like "So, Oscar, how long, if you had to guess, until bedtime?" and "Daddy said he'll be home in 20 minutes. What time will that be?"
He fell for each silly question -- first lifting his elbow in his slightly exaggerated fashion, then jiggling his wrist to work his sleeve down his forearm to uncover his watch. But, just when his eyes would come to rest on the little blue face, he'd realize and start giggling all over again.
It's taken me a while, but I really think humor is a great behavior management tool for Oscar. Everything we read about PWS when Oscar was a baby emphasized that people with this disorder are too literal and have trouble understanding the humor in situations. Yes, Oscar definitely struggles with subtler social cues. He doesn't get all the jokes, but he actually really enjoys humor and gentle teasing. And I think all the giggling releases some of his pent-up anxiety and wards off tantrums. That's my theory anyway!
Showing posts with label perseveration. Show all posts
Showing posts with label perseveration. Show all posts
Wednesday, September 22, 2010
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.
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.
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