Feature

What my special needs daughter taught me about Christmas

Keep it simple. Breathe.

A few weeks ago, I watched the Rockefeller Center tree lighting on television with my kids. There was much Christmas music and dancing, interspersed with commercials about the holiday and what to buy. At one point, Al Roker cheerily announced, "Christmas is here!"

On cue, my 15-year-old daughter, who has a form of autism, sat up and asked when we were leaving for Grandma's house. "Not for a few weeks," I said. And then I tried to prevent my daughter from having a full-fledged meltdown because we were not immediately packing up to go over the river and through the woods.

This can be a confusing time for anyone, let alone a teenager with cognitive disabilities. Erin has trouble conceptualizing the length of a day, a week, or a month — or 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 breakfast and the yellow bus. She thrives on routine, so we break her days into small increments. Every morning we write the day and date on a white board and list the order of activities, including any and all minutiae, "Wake up, brush teeth, have 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. Monday: music. Tuesday: cooking class. Wednesday: fit club. Similarly, she understands what to expect on holidays. Valentine's Day: red hearts and chocolate (good). Fourth of July: barbecues and fireworks (loud). Christmas: Grandma's house (bliss).

Every year 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. All my kids revel in every detail, but Erin more than most, because Erin believes.

Erin delights in the magic of Christmas. She takes the holiday and much of life at face value and does not question 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 particular evening sitting on the stairs — her signature protest move.

I empathize with her frustration. I also find the season overwhelming and swing daily between denial and panic attacks. 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 just sit on the staircase until she can wrap her head around the situation. Sometimes I join her.

But eventually we fall back on what helps most: the schedule. We pull out the white board and review what activities comprise tomorrow: the yellow bus, a field trip to Target, a visit to our neighbors. Slowly, a smile emerges.

We've learned it's best to just stick to the routine, to the small things.

This hyper focus on the simplest of tasks allows an intense recognition of each and every minute. An uncanny focus on the present is what brings her joy. Erin has taught us to slow down and to 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 and hold fast to the most essential details of our days: wake up, brush teeth, have breakfast, breathe.

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