What My Daughter on the Spectrum Has Taught Me About Christmastime

I watched the Rockefeller tree lighting with my kids this week. As you would expect there were Christmas songs and dancing, interspersed with commercials about the holidays and what to buy.

“Christmas is here!” Al Roker announced.

On cue my 15-year-old daughter, who’s on the autism spectrum, sat up and asked when we were leaving for Grandma’s house. “Not for a few weeks,” I said, as my 9-year-old wondered how it could be snowing in the city when it was 50 degrees and raining at our house 20 miles away.

Watching white flakes fall around a sparkling Sarah McLachlan, I explained that for some people snow means Christmas, but that snow was not real. As I tried to prevent Erin from having a full-fledged meltdown because we were not immediately packing up to go over the river and through the woods, it felt as if the accelerated commercialization of Christmas and global warming had conspired to turn this short homework break into a panel discussion on climate change and the subjectivity of time.

I tried to play the role of wisdom-filled parent but understood their confusion. This time of year can feel like a fun house where nothing is at seems, and retailers (and Facebook) will have you believe everyone is rushing to a fabulous party and time is moving at lightning speed. Act now, buy now, do not wait! As the weather remains temperate, the gradual climate shift only seems to compound the uncertainty. In our
northeastern suburb it seems incongruous to haul gifts and evergreens over a doorstep full of fallen leaves. It’s hard to usher in a new season when another refuses to leave.

This can be a bewildering time for anyone, let alone someone with cognitive disabilities, who might have trouble conceptualizing the length of a day, a week or a month or understanding that however high those Rockettes kick we are not going to Grandma’s now but instead four weeks from now. It’s no easy lesson.

Over the years Erin has learned to use the traditional markers of time to give order to her days. The sun rises in the morning. Morning means raisin toast and the yellow bus. She thrives on routine, so we break her days into small increments. Every evening we write the next day and date on a white board and list the order of activities, including any and all minutiae, “Wake up, brush teeth, eat breakfast…” If she’s going to do it, it’s on there. She finds this an intensely grounding and joyful activity.

Through the repetition of this routine she has learned what certain days signify.  Mondays: music, Tuesday: cooking class, Wednesday: fit club. Similarly she understands what to expect on holidays: Valentine’s Day: hearts and chocolate (good), Fourth of July: barbecues and fireworks (loud), and Christmas: Grandma’s House (bliss).

We celebrate Christmas at my parents’ house, and aside from her birthday it’s Erin’s favorite day of the year. My mom creates an evening that plays to all of Erin’s strengths. There are stockings bulging with gifts, music, dancing, Christmas books and stories read aloud. A Santa’s helper even arrives with a sack full of toys. Each of my kids revel in every detail but Erin more than most – because Erin believes.

She delights in the magic of Christmas. She takes the holiday and much of life at face value and does not question out loud the how or why of its traditions. Rotund man dressed in red, up and down the chimney. No problem. Let’s just be sure to leave him cookies and wish him well along the way.

What Erin does question is if Christmas is “here” and “now,” why are we not “there”? Distraught by the reality, she spent the rest of that evening sitting on the stairs – her signature protest move.

I empathize with her frustration. I too find the season overwhelming and swing daily between denial and panic. It can’t be December; I don’t even need a jacket. Oh my God, did that woman just say she’s finished with all her holiday shopping? What’s wrong with people? What’s wrong with me? I fully understand Erin’s inclination to plant herself on the staircase until she can wrap her head around the situation.

Sometimes I join her, and we just sit and listen to each other breathe — until we remember what helps get us moving again: the schedule. We pull out the white board and review what activities comprise tomorrow: dance class, a field trip to Target, a visit to our neighbors and slowly a smile emerges. We’ve learned when you’re caught in a tidal wave of a day or a week, sometimes the only way out is to live moment to moment and to focus on the routine – on the small things.

Erin’s hyper focus on tasks allows an intense recognition and appreciation of each and every minute. An uncanny focus on the present is what brings her joy – and every day brings its own set of magic and miracles. Erin has taught us to slow down and take the moments as they come, understanding that not unlike stepping stones, if we get too far ahead we may slip and lose track of ourselves and time itself.

So until it’s time to leave for Grandma’s house, we are going to keep TV watching to a minimum, keep the white board close at hand and hold fast to the most essential details of our days: wake up, brush teeth, have breakfast, breathe.

God Bless Us Everyone.

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Thinkstock photo by Artfolio photo