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Sharing My Daughter With Autism's Joy This Holiday Season

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Most years I dread the onslaught of early holiday jubilation. The highly wrought cheer and manufactured frivolity only serves to whip my daughter into a frenzy. Erin, who has autism, has trouble self-regulating on a typical day, so the first sign of Rudolph leads to sleepless nights and days of unbridled energy. But after the curveballs of 2020, preemptive holiday revelry has slipped way down on the list of “things that might throw Erin off.” In fact, this year, I found myself rushing the return of reindeer and the 24-hour holiday station, and it was all I could do not to bear hug the life-size Santa in CVS.

Erin, like the rest of us, has had to do a fair amount of processing over the past nine months.  In an effort to self-soothe, she recites the names of teachers and aides, friends and family members we have not seen in too long and asks when she can be with them again. As she sifts through this deep loss of connection, the reassuring rituals and familiar sights and sounds of the Christmas season could not arrive soon enough.

It’s been a confusing year for kids everywhere — but particularly challenging for those who rely on a predictable routine to ground and guide them through their days.  We tried remote learning last spring, for about an hour.  When Erin saw her teachers and classmates boxed alongside each other on a computer screen she pressed her face to the glass and screamed: “I want to go there!” She didn’t understand why they were “all together,” while she was stuck home with me.

Erin did not understand the cancellations, closures and quarantines any more than the regulations required upon reopening.  When a favorite book store welcomed customers again last summer, we were not allowed inside the building, but invited instead to pick up orders at the door. This made no sense to Erin. She’s not a halfway there person. She wants to look and see and touch. She wants to wander the aisles, to discover old favorites and to study the latest version of the cow jumping over the moon. For her it’s all about the process.

Erin’s process entails an up close and tangible investigation of the world around her. She does not adhere to the rules of social distance.  When she sees someone or something she loves, she hugs with abandon — and hug our Christmas decorations she did. After a year that barred her from so many people and places she loves, she held on to every Santa, snowman and angel a little longer than usual as we unwrapped them from last year’s news.

Even my three jaded teenage boys got in on the act, helping, unasked, to pull the boxes from the shelves — delighted to see the dancing gingerbread man, the singing Snoopy and St. Nick whose head keeps falling off but we can’t bear to discard. They laughed at each other’s homemade ornaments and framed pictures of smaller, smiling versions of themselves.

Like Erin, I found myself holding on and looking a little longer at the faces in the photos. Sitting in sandboxes or at the bottom of a slide, they look as carefree and happy as preschoolers are supposed to be. Adolescents seldom smile like that.  This year the divide seems even more stark.

Erin is not the only one left spiraling from the past months. As “PCR” and “rapid results,” “masks” and “temperature checks” entered the lexicon and fabric of every day life, much has been written about the anxiety and isolation teens have experienced at the hands of COVID-19. Aside from commiserating, telling them to buck up and to appreciate all they have, there’s not much parents can do. This thing is larger than we are. We all have to abide by the rules and live with the disappointment of waylaid plans and the threat of impending illness.

I guess that explains the compulsion to join Erin — and Santa — on the rooftops and in CVS this year and to proclaim that school and sports, concerts and dances may be canceled but Christmas is very much on. This year it’s all I can do to throw open the door, pull up a chair and welcome the season back like a long traveling old friend who reminds us who we used to be, how we can be again and however unlikely it may feel at times that music and light, love and laughter can never be kept at bay for long.

Getty image by Lacheev.

Originally published: December 15, 2020
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