By Maria Dwyer, SafeMinds Board Member
“NO THANK YOU!” Colin, six years old, screamed over and over as if he were being stung by a thousand yellow jackets. We were 33 seconds into a 16-hour drive on I-95 from New York to Florida. No one had any idea why Colin was so upset.
It took us twenty minutes to figure it out.
My husband, who was driving, had put down the visor to shield his eyes from the sun.
Children like my son who are diagnosed with autism spectrum disorders struggle with rigidity in their daily routines and any deviation from the norm can provoke screaming, tantrums, and even violent behavior.
(Colin also could not bear for my husband Tim to wear sunglasses or turn the radio on while driving. It was a tough road trip to Florida that year.)
As parents, we are constantly looking for ways to help kids with autism become more flexible. But as hard as it is for us, our children find great solace from a clear and consistent routine. Some routines take a long time to put into place, but once you have them—provided you always follow the script—life becomes much more harmonious.
My friend and fellow SafeMinds board member Heidi Roger’s son Andrew is obsessed with pizza. He would ask for pizza everyday by opening the freezer where Heidi usually kept extra slices, pointing in, and saying “Cheese! Cheese! Cheese!” He also asked for “Pizza delivery man” every night at dinnertime. It got so bad that when Heidi’s ex-husband said, “No pizza tonight,” Andrew physically attacked him.
But Heidi and her ex didn’t think it was healthy for Andrew to eat pizza for breakfast, lunch, and dinner. So they worked out a schedule where Andrew eats pizza for dinner every Wednesday night.
Heidi tells me that sometimes Andrew still asks for pizza on a night other than Wednesday. Heidi reminds him that only Wednesday is pizza night and then tells him the day of the week. But when she asks him to repeat right back to what day it is, Andrew answers, “Wednesday!” Who says kids with autism can’t lie?
Like Andrew and so many other children on the autism spectrum, Colin, who is 15 now and much less rigid than he used to be, will not be celebrating a graduation, getting his driver’s license, or receiving a sports award from his high school.
Without those rites of passage and special celebrations, maintaining familiar routines and celebrating holidays is especially important for our kids. Planning and celebrating all the major holidays gives Colin more than just a sense of familiarity and routine, it helps him better understand dates, seasons, and the passage of time.
So, yes, thank you very much, we’re that family: The one that has the scarecrow in the yard sitting on a bale of hay by November 15th and the giant bunnies on lawn display for Easter.
It doesn’t hurt that I work at Martha Stewart Living where we start planning Christmas in August.
Lest you judge me too harshly, I’ve never decorated with a blow-up, so I consider my beautifications non-offensive to the neighborhood.
One of our biggest celebrations is St. Patrick’s Day. We have a local parade that passes by the corner our house and we invite all our friends to a big house party with corned beef and cabbage, beer, and lots of green! Colin and I also attend the 5th Avenue St. Patrick’s Day parade. He looks forward to the bagpipe bands for weeks in advance, watching bagpipe band videos on YouTube non-stop and marching around the house pretending to play the drums and the bagpipes.
We also celebrate Thanksgiving, Easter, Christmas, New Year’s, 4th of July, and birthdays in a big way. There is always a holiday coming up and we talk about it in advance. Colin is instrumental in planning the fun.
Everywhere I look these days I see advertisements about kids going back-to-school. But Colin, like most spectrum kids, attends a 12-month school program and only gets two weeks off at the end of August. Back to school, like many other mainstream things that parents of neurotypical kids take for granted, is not relevant for him. Our kids work so hard but don’t get to enjoy a summer break like their siblings. We filled Colin’s two-week break with activities that he loves, like swimming in the ocean and going to the zoo, and then it’s back to same routine.
Routine is important for our kids to help them understand what is coming next, so the world doesn’t feel like such a scary and unpredictable place.
Here are three tips to help you and your family establish a routine:
✔Make it big: Use an oversized calendar or a big chart on the wall, like this one, that everyone can easily see. Hang it in a central location. Some families also have good luck using visual flipbooks, like these.
✔Keep it simple: Use hand drawn pictures or large photographs for children who can’t read, or simple one-word visuals for children who can.
✔Keep it consistent: Kids on the spectrum like to do the same things in the same order. Even just the doorbell ringing can lead to full blown panic. The more consistent the regular routine, the better.
Autism is not a celebration. It’s a disaster. Though we love celebrating holidays and our family has come to embrace fixed schedules and routine for Colin’s sake, all of us at SafeMinds with children on the spectrum have the same wish: that an effective treatment for autism will be found in our lifetimes.
Until that day comes, we move forward in raising and loving our kids, doing the best we can, finding innovative ways to deal with the complexities of autism, and, yes, reveling in the routines.
What routines do you have in your family? Do you find having a routine helps your children thrive?
Maria Dwyer, a mother of four and Director of Broadcast Sales and Strategy at Martha Stewart Living Omnimedia, is on the Board of Directors of SafeMinds and oversees the Communications Committee.
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