My child has autism. Here's how I help her thrive.
It's all about routine
Most days we manage to stay on task and in the moment. We get up, brush our teeth, find or don't find our shoes and clothes and favorite hat. We catch the bus and the carpool — go our separate ways for a few hours — and then regroup for the afternoon's festivities of snacks, sports, homework, dinner, showers (maybe), sleep, and the dream of doing it all over again.
It's our very own version of the movie Groundhog Day, in which Bill Murray maddeningly gets stuck repeating the same day over and over again. But for our family of four kids and a dog, as long as we stick to the schedule and no one gets hurt, I have come to realize Groundhog Day has its perks.
Any parenting expert, any parent, will report that kids thrive on a predictable routine. Parents of children with autism know that some kids take "routine" to a whole other level.
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In our kitchen we have a dry-erase board and every night at Erin's prompting I write the schedule for the next day. She smiles and claps her hands in delight as I record what time the bus will arrive, what time it will deliver her home, what classes or activities lay in store, will there be visitors or guests, will there be a trip to the library or CVS or the grocery store. For Erin a regular routine brings comfort and joy — and there is magic in the mundane.
I'm not a planner by nature. In fact, in my former life there was nothing I relished more than a day that held nothing more than possibility. Erin, 14, and her younger brothers to a lesser extent, have conditioned me to understand and embrace the merits of routine — and have taught me how tricky life can be when we veer off course.
While other kids celebrate a snow or vacation day, Erin grows anxious. I now do, too. I frantically scribble a list of the minutiae: Wake up, feed the dog, eat breakfast, brush our teeth, watch a show, read a book, go for a walk, bake cookies. I insert a lot of smiley faces throughout in an effort to reassure that this uncharted terrain is okay; it is manageable and we will get through.
But there are days and moments that defy routine and my smiley faces. They are unavoidable.
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On one recent night, the boys brought up "the future." In most families, I imagine, this is a reasonable topic. Kids everywhere like to ponder: Where will I live? Who will I be? But in our home this line of hypothetical questioning inevitably leads to shaky ground.
While we're all okay with the fact that Jay, 8, may never play in the NBA, we are less okay with the unlikely prospect of Erin ever living independently. With the boys I feel confident in my hopes that they will one day find a job and friends and live on their own or with someone who loves them. Erin — I don't know and I have no real answers to her brothers' questions: Who will she live with? Who will take care of her? Will they be nice to her?
"She will be safe and happy and cared for," I tell them. But I don't know if this is true.
What I do know is what Erin asks me to see and to celebrate every day: The sun comes up, the sun goes down, and in between we have a day.
We have our routine.
We have our dry-erase board. Its confines keep us in check and keep us contained. Thankfully there is space for only so much: four kids, one dog, one mom, one day. Repeat.
Eileen Flood O'Connor is a writer and mother of four children, the oldest of whom has an autistic spectrum disorder. She graduated from the University of Virginia, holds an MA in literature from University of London, and attended Columbia School of Journalism.
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