Before my son, Charlie’s, second Christmas, he was diagnosed with cerebral palsy. When the doctor at the developmental clinic’s office made her pronouncement, I took it as best as I could. I went numb and stoic and gave her my best poker-face until I escaped to the parking garage. Then I buckled Charlie in, kissed his head, sat in the front seat and cried as silently as I could so he wouldn’t hear.
I didn’t cry much about it after that day. I had too much else to worry about – keeping his tracheotomy and his gastrointestinal tubes clean, stretching his legs when they got cramped and stiff, singing the worst renditions of “Somewhere over the Rainbow” because it made him laugh and when he did his trach bobbed up and down like a little bow tie. We carried on with life.
I knew to expect tight hamstrings and minimal vocal expression and weakness in his hands. But certain things took me by surprise. Charlie could not stand the sound of vacuums, hair dryers, electric razors or loud laughter. He startled often and did not like crowds and the noise they brought. When I took him to his cousin’s pee-wee football game, he cried so hard at the cheering that I gave my apologies and left. It was too much for both of us.
Our First Trip to Meet Santa
And yet, when I took him to the mall to see Santa for the first time, I worried I would run out of snacks or the line would be too long or he would refuse to sit on his lap – all the normal things. At first he was fine. I had Baby Einstein playing on an endless loop on my phone. I held him and when that got old, I rocked him in the stroller. The music playing over the speakers was a loud and terrible remix of Christmas classics. Still, it was bearable – for about twenty minutes. And then a toddler a few people ahead of us began to cry. It was a high-pitched keening without end. The rest of the kids picked it up like a chorus line. I held my breath and looked to Charlie. His face went from pink to red to a deep, blotchy purple as he began to cry with all his might. Because of the trach, it came out as a desperate wheeze. I choked back my own tears and picked him up. I rubbed his back. I sung in his ear. None of it mattered. As the line inched forward, closer to Santa’s snow-frosted hut, all the other kids calmed down, but not Charlie. He only got more agitated.
So we left. Charlie was undone and nothing about this hot, crowded mall and ten-second visit with Santa was going to fix it. Those holiday pictures of kids screaming on Santa’s lap are funny to everybody but the kid. To the child, it is traumatizing. Santa is scary. Especially the mall Santa. He’s aggressively cheery. He’s large and loud and sweaty and smells like cigarettes and Cheetos. I had no problem giving up that “tradition” after Charlie’s first attempt.
Sensory-Friendly Santa
A few years later, Charlie received his secondary diagnosis of a sensory processing disorder, which explained the sensitivities to sounds and crowds. In researching behavioral therapy and whatever tips and tricks I could find to ease his way through this noisy and swarming world, I came across the Sensory-Friendly Santa through Autism Speaks. This was something we could do, designed specifically for people like us, in an environment we could handle. For once, we weren’t having to adapt to the rest of the world’s demands. It was meeting us where we were.
I checked the listings and this Santa was coming to the very same mall where we had our first traumatic visit. This time, however, it was not open to the public. There would no shuffling in long lines and getting jostled by the crowd. Instead, you take a number and then head over to one of the craft tables to color or have a snack or, in our case, read a book and watch YouTube videos. When our number was called, Charlie rolled himself in his wheelchair up to Santa, who asked if he would like to sit on his lap or stay seated. Charlie chose to stay in his chair. And then, using his speaking device, he told him he wanted a Power Ranger book for Christmas. No one rushed him. No one was screaming in line, because there was no line, and all the kids were happily occupied. It was a paradox: an oasis of calm in the middle of the mall three weeks before Christmas.
As we rolled back out to the parking lot that day, I couldn’t help but wonder why we all don’t request a sensory-friendly Santa. This time of year is perhaps the most stressful and anxiety-inducing of all. We are bombarded with music and lights and throngs of people and expectations for the season that are larger than life. For this one small holiday tradition, we deserve to have a little peace and joy.
For More Articles Related to the holidays and Parenting Children with Special Needs:
- Here’s How Our Family Thrives During Holiday Vacations
- I’m a “Catastrophizer” But I’m Trying Not to Let it Ruin the Holidays
- Why Our Family Opts to Stay Home for the Holidays
Jamie Sumner is a special needs mom and author.
Discover her new book, Roll with It.
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