Saturday, October 17, 2009

No Wonder

Most of my day revolved around the storytelling festival at the kids' school. Well, technically, it is just Oscar's school now...with Abe in middle school and Ruby not yet in Kindergarten. But I see it as our school, our community, regardless of how many children are technically enrolled at any one time. 

I worked most of the day, picking up sushi for the event, and (wo)manning the food booth for three hours.  I always find it ironic when I end up on food duty given our family's strange relationship with food.  Not that I mind...if anything PWS has made me more obsessed with food as well.  Back in the shady parking lot made festive with colorful California Sycamore leaves scattered about, I drank two cups of decaf Peets with three sugars and an ample amount of half and half.  I chatted with fellow food workers and patrons.  I ate California rolls and fresh ginger cookies. There are definitely worse jobs.

At 3pm, when my shift was up, I settled into a folding chair in the warm sun to listen to Joel ben Izzy.  Oscar was up front with a friend, and Ruby was sitting with Paul.  I lucked out, sitting with just our friend who popped down for the event, and Abe.  I'd heard Joel ben Izzy's stories before, but live is always better so it was nice to relax and listen. 

By the 4pm break though I was tired and ready to go.  Abe was coughing and feeling a bit sick, and neither Ruby nor Oscar had had a nap so leaving made sense to me.  But Oscar apparently wanted to stay because when I told him the plan he started screaming and crying so loudly he startled everyone around him.  Even his 1st grade teacher who has seen her share of Oscar tantrums over the years looked surprised at the intensity. All I could do was take his hand and lead him out the gate.  The screaming continued all the way down the block, drawing stares from neighbors and passersby. At one point I picked him up and carried him to move our show along.  At the end of the block I handed him off to Paul because I still needed to shop for dinner.  He screamed the rest of the way to the car, and all the way home. When I finally arrived home 45 minutes later his eyes were still red.  He wanted to talk about it some more with me, so, of course, his screaming started again.

Instead of feeling compassion for this kid who thrives on routine, advance warning, and predictability (none of which I provided this afternoon), my frustration rose when he launched into his argument all over again.  And when Oscar is upset he fabricates -- so he embellished, exaggerated, and lied about the afternoon's events trying to convince me that we should have stayed to listen to the next storyteller.  I spoke calmly but inside I was steaming, impatient. I shuffled papers and sorted mail while he yelled at me.  I wouldn't look at him.  I just wanted him to stop.  I reminded him three times that if he had spoken calmly while we were at school we might have been able to work something out. He only screamed louder.

Eventually we insisted that he take a break in his room to calm his body down.  He did, and it worked. It always works.

But while he was resting and I was making guacamole for our chicken tacos, I realized how much energy this consumes, and how we suck it up and don't talk about it that much. We are so used to it, so much so that we wonder why we are tired and stretched and why nothing ever gets done. Okay maybe I am exaggerating a little...but when you add it all up -- the extra doctor appointments, meetings, food planning, tantrums and naps, well no wonder. NO WONDER.


  1. No wonder. That's an apt expression. No wonder. There is absolutely no wonder, sometimes, in this life we lead, and the only thing I can think of is that we just have to make it up. Make up the wonder. Or look for it when it goes hiding. And you do, you always find the wonder. This is a great post with a surprise ending.

  2. Personally, I think many people don't understand the internal energy zapper parents of children with special needs possess.

    Often, I am tired and I know that other people just don't understand why I am so tired.

    But, internally, emotionally, cognitively, whatever you want to call it, there are parts of any given day when I feel like I've run a marathon for the very first time.

    Throw into the mix my own applied pressures like "am I doing enough?", and well, I'm just not the gal I used to be. I have good days and bad days...just like Gabriel.

    One thing that I find can be challenging is accepting when I am frustrated, or disappointed, or angry as a mother. This probably has less to do with Gabe having Ds, but I think that the urge to supress these more negative emotions is stronger because he does have Ds.

    Finding coping strategies (like asking Oscar to go to his room to let his body relax) is a brilliant idea -- and I think you've offered me more insight about what I could be doing to cope a little better with some behaviours.

    Thank you!

  3. I'm so glad that you ARE talking about it here. You need a place where you can do that, and other people need a place where they can read about it. This is so important, Mary!

  4. Hi Mary,

    Thanks so much for your comments and your offer of No More Tears writing program!

    I wanted to say that I would gladly pay for the No More Tears program and shipping. Please let me know if this works for you.

    I'm at if you want to let me know...

    Many many thanks!