Wednesday, December 14, 2011

The Story of Our Lives

"All the world's a stage,
And all the men and women merely players."
-William Shakespeare 

During the month of November, people around the world lose their minds and decide to write a 50,000 word novel as part of NaNoWriMo. I participated for the first time this year, and am proud to say I was a winner. "Winning" simply means I completed the 50,000 words.

The best thing about NaNoWriMo was that every day I knew what my priority was for that day: write at least 1,667 words. Of course, I still had my family to care for, but beyond that, everything else could wait. I felt no guilt leaving dishes in the sink or delaying the laundry another day, or even neglecting my blog, because I had a job that needed to get done.

It also felt wonderful to complete something. The novel isn't by any stretch of imagination a great work of literature. But it is a complete story, with characters and a plot and a beginning, middle and end. I had a goal, I worked to make it happen, and I finished it.

I had lofty ideas about what to do with all that time I would get back after November was over. Go to the gym! Write my blog every day! Prepare meals for the week! But now that December is here, I am back to the scattered reality that is part and parcel of being a parent to two children, one of whom has special needs. This month I have been: researching new ABA providers, finding a dog trainer, working through the functional behavior analysis (FBA) process to try to determine why my son is being aggressive at school, organizing Moe's growing paper trail (see previous item), sending out holiday cards, buying a new dishwasher, finding a new babysitter or two, and more.

Some of these tasks have been on my to-do list for quite a while, and many are ongoing tasks that won't ever truly be complete. My list has always looked a little like this, but at least I used to be able to stop and find some focus when I was writing my blog. For some reason, it is harder now.

My blog provides a great emotional outlet (as many of us say, it is cheaper than therapy) but it is not the distraction from reality that the novel was. My blog chronicles my life, including the many challenges involved with raising an autistic preschooler. It provides a place where I can explore my feelings, come up with a plan of action, and connect with others. But it can also be difficult to re-tell some of my more unhappy moments difficult situations.

When I was working on the novel, even though the characters and events were loosely based on personal experience, I was writing about somebody else. I was in somebody else's world, and I was in complete control of the events. I controlled whether the main character's special needs child spoke or didn't, how he interacted with other kids, and how quickly he progressed. I controlled how much my main character and her husband fought, or how easily they made decisions together about their son's care. I controlled what meltdowns happened and when, how friends and family reacted, and who stuck around to the end. My characters' behaviors may not have always been pretty, but they were under my complete control.

The lack of control really is the one of toughest things about being the parent of a child with autism. There is so much uncertainty about really big questions. Will my child even learn to use the toilet? Will he speak? Will he ever live an independent life? Will he be loved and taken care of after I'm gone?

As parents, we try to gain control. We write IEP goals and implement systems. We research therapies, diets and medications. But ultimately, so much has to do simply with time and development - and those darn kids who insist upon having wills of their own.

How much would we give to be able to simply write the story and make it so?

But we know life doesn't work that way. And so it is time to get back to reality and write once again about the events that make up my family's story, some mundane and some extraordinary, but always real. At least until next November.


  1. Congratulations (again) on winning NaNoWriMo! I have to agree, having that sharply defined goal with a clearly delineated endpoint was wonderful...and of course, God-like control over everything that happened or didn't happen was nice, too!
    Our son picked up a rash (head to toe), the week after Thanksgiving that we're still fighting. It's hard when his pain threshold is so high that he will literally scratch himself bloody without realizing it. He turns 17 in one month, and we're no closer to the big answers than we were when he was little. I'd LOVE to be able to write the ending to his story and give him "happily ever after." For now though, I'm working on being satisfied with "mostly under control."

  2. you are amazing!!! don't ever forget it. your blog is also my therapy. sorry to be selfish about it -- but put quite simply...i missed it while you were busy writing. i am glad you're back because even though we both have all of those unanswered questions, we have each other. and, for me, that means a lot. xoxo

  3. Congrats on a great accomplishment. Writing is so important for those who are called to do it. As a special needs parent it is a way of keeping one little part of yourself...when so much needs to be given away.

  4. Jen - I wish you could publish your novel. I'd love to read any book you write. I love stories.
    Really happy you could dive into another world for the month of Nov. Congratulations on the discipline.