Chorus of Absurdity: Autism and the Holiday Show   13 comments

Is there legal precedent whereby a parent is forced to hand over his cellphone to a court of law as evidence against his child in the event of her causing property destruction, injury, and even death at a school holiday show? This was the question running through my mind as I awaited Skylar and her class to the take the stage last week. It’s fair to say there are few things I dread more than my daughter’s participation in this annual event. My dread is well-earned.

It’s impossible to raise a child with autism without a deep appreciation for absurdity and, through the years, Skylar has provided plenty of absurd moments at these shows. For example, there was the time she launched her kazoo from the stage, somehow bypassing everyone seated in the very front to nail a frail grandmotherly-type in the second row. Was it horrifying to witness? Yes, but it was also difficult not to be impressed by my daughter’s throwing accuracy. Even more horrifying/impressive was the time she dropped to the floor mid-song, sat in a W-position, and proceeded to grind the stage with an intensity that may well have inspired Miley Cyrus’ infamous 2013 VMA Performance. Or was she stealing Madonna in the wedding dress from years back? My daughter is a trendsetter/copycat.

Skylar’s autism is nothing if not versatile, however, so the action hasn’t always emanated from the stage. One year she had such earthshaking fit in the hallway waiting go to on stage that seemingly three-quarters of the audience turned around from the show to take it in. Of course, that doesn’t compare to the year she threw such an earthshaking fit in the hallway waiting go to on stage that she never even made it to the stage. Big deal—a true performer doesn’t need a stage.

Skylar’s unique approach to her holiday show participation can also be powerful enough to bring out the inner-revolutionary in others. This was never more apparent than the time she began to cry and yell mid-performance, prompting my then-two-year old daughter Alyssa to jump from my lap and bolt towards the stage herself, calling out “I’ll save you, Sky-wah!” As I grappled with 25 pounds of redheaded little sister fury for all to enjoy, it struck me that it wasn’t just Skylar who was the problem: you can’t take us Dalys anywhere.

I make light of all this because the alternative would be to jump off a high bridge or, worse, not show up to support my daughter out of fear of being embarrassed. It would probably help if Skylar’s schoolmates, their parents, and the staff at her school weren’t so accepting and loving of her and my family because if they were the types of jerks you so often hear about at other schools, I’d feel a sense of vengeful pride about my daughter’s autism compromising their enjoyment instead of a massive sense of guilt. But I wanted the show to go flawlessly for their sakes because I loved them all just as much. It was hard to imagine this happening with Skylar involved, though.

As I readied my cellphone camera to record the show for our enjoyment/possible evidence, I started to consider just why the holiday shows were such an annual disaster for Skylar. The simple answer is that she’s a child with autism being forced to both stand in front of a crowd and wait, both extremely common stressors for a child prone to overstimulation and in need of movement breaks. But like most things with Skylar’s autism, the answer probably wasn’t that simple. If it were, why would she have given such excellent, incident-free performances at dance recitals and karaoke party performances in front of even larger crowds in the past? Maybe it was hearing and seeing the kids around her on the stage more than it was the crowd? Or the expectation she remained in one place throughout the performance? Or not being able to sing the song she wanted to? Whatever the culprit, it was time to stop pondering the whys, as Skylar took the stage with about 25 of her fellow fourth graders for the first of two songs.

I zeroed in on her with my camera phone, pressed record, and started laughing, as her self-chosen attire made the transition from introspection to embracing absurdity easy. You see, while almost all of the other fourth graders were dressed in red, green, Santa hats, and so on, Skylar rocked a blue dress and headband she’d decorated with every color of duct tape known to man—besides any typically associated with Christmas, that is. Naturally, a feather taped to said headband rounded out the winning ensemble. Happy Belated Thanksgiving, Happy Belated Halloween, or Happy Martian Day? Seriously, if presenting herself in such a bizarre way relieved her stress enough to keep any impending criminal activity more of the misdemeanor than felony variety, it was fine by me. Topping things off, Skylar was handed to sign to hold reading “Shalom-Peace”. Hahahahahaha! Apparently, whoever put the show together had jokes.

I was hopeful the sign wouldn’t be used for javelin or assault purposes because Skylar has thankfully outgrown such behavior. On the other hand, the odds of “Shalom-Peace” remaining in one piece with my PICA-leaning child in such a high stress environment were remote. As the first song began, Skylar didn’t sing along or do any of the basic choreography but she rocked to the music and treated the sign well outside a bit of twirling. Not bad at all. When the next song began, her 1:1 grabbed the sign away (not punitively but because it no longer fit the show content) and she mildly stimmed by rubbing her hands together and scratching her cheeks. Once again, she didn’t sing or move in synch with her classmates but overall represented herself in quite a dignified manner. Wow! Was that it? That was great!

As she left the stage, I stopped recording a bit early to applaud my heart out. Skylar had just given far and away her best holiday performance ever. And this is where the inspiring story ends. Happy holidays, everyone…wait. No, the story doesn’t end here. What happened next proved to be much worse for my delicate Autism Dad psyche than mayhem or absurdity would have been. What happened next was devastating: the school chorus took the stage.

They sounded amazing. What a collection of gifted singers. Their voices caused me to think of another gifted singer I know—Skylar. My little girl has perfect pitch, can hit any note, and has an audio library of thousands in her brain that ranges from humming Beethoven to rapping like Tupac to melodizing like Jenny Lewis. She’ll bust out these renditions at any time and only on her terms (she does not take requests) but they aren’t a product of echolalia; they’re one of her primary means of expression and they’re perfect.

My mind drifted back to when she performed Katy Perry’s “California Gurls” at her grandmother’s retirement party. Skylar had nearly two-hundred people mesmerized. That audience exploded in applause when she finished and I remember the joy on my little girl’s beautiful face as she jumped up and down, thus proving she does like to sing for others. Being in a chorus would certainly provide such opportunity. But how would that work? I’d just been celebrating the fact she didn’t murder anyone during her holiday show and now I’m thinking about her in the chorus? Really? I was embracing absurdity all right! The heartbreaking realization Skylar could never be a part of the artistry taking place up on stage hit me hard.

Skylar perfoming “California Gurls” by Katy Perry at her Nana’s Retirement party

The depression intensified as I drove Skylar home and listened to her sing “Sirens” by Pearl Jam better than Eddie Vedder does. Moments where I despair about what might have been for my daughter have lessened as the years go by. I’ve sincerely come to accept that her path is destined to be very different but not necessarily any worse than anyone else’s. Still, self-pity parties still do take place every now and then and I was at a rager, wallowing away when my cell phone rang. It noticed on the ID it was a friend and fellow school parent.

“Sean, I made a joke that somebody overheard about what if Skylar hits somebody with that sign and a parent of one of the younger kids reported me to the Principal,” she began, sounding breathless. “The Principal brought me to her office to ask me about what I’d said and I told her how much I love Skylar and how we’re friends and how you were probably thinking the same thing about the sign. You know I didn’t mean anything by it!”

My heart filled and my sadness instantly vanished. This misunderstanding was yet another example of how well and how universally my would-be-misfit daughter fits in at her school. She has a principal who cares about her enough to address a situation other principals would have just shrugged off. She has schoolmates with parents who don’t even know her who are still willing to stand up for her. And she has schoolmates with parents who know her well enough to feel comfortable in making a good-natured joke versus demanding she not take part in the performance again after years of disasters or condescending to her with unnecessary empathy. “Don’t worry,” I replied to my friend, laughing. “I was thinking she’d eat the sign.” The entire situation was absurd—absurdly encouraging. Why couldn’t Skylar be in the chorus again?

I realized the answer is she absolutely can be. Not this year but perhaps next or the year after. My daughter has the voice, desire to perform, and, most importantly, support system of an entire school of people rooting for her. Sure, there’s lots of work to be done but she’ll get there, just like we got her to the point of finally tolerating being in the holiday show. I wish I could end this blog with a rousing triumph of how she went from screaming in the hallway to chorus star but I predict that will be my entry this time a year from now. For now, happy holidays and thanks for reading!

Retro picture of Skylar and Alyssa probably around time Alyssa's stage rush occurred. Note presence of a gate around tree. Autism+gate can often=friends

Retro picture of Skylar and Alyssa probably around time Alyssa’s attempted stage rush occurred

13 responses to “Chorus of Absurdity: Autism and the Holiday Show

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  1. Sean, this is great thanks for sharing!! I really enjoy your writing!!

  2. Thank you, Monique! Skylar gives me no shortage of material.

  3. I’m deeply touched to read about Skylar. I have a nephew, Jack, whom we love so much. He just turned 13 and has been hired as the beverage manager at Steak n Shake in Carmel, Indiana. This is major news! He has always brightened my world. He has known all the planets since he was 2. And a couple of years ago while we were visiting for Christmas, he had asked and received a smoke alarm and a mouse trap and sat under the tree pushing the smoke alarm occasionally just to see if we were all still awake! I hope you will continue writing about your journey, as I am sure it will help build greater awareness of autism, and also allows you to share with humor your experiences.

  4. Hi Rebecca. Thank you for kind words and how exciting about your nephew’s job! I advise most people to start doing job prep for kids with ASD around his age but he’s ahead of the curve. Did you blog about his great accomplishment? If not, can I? 🙂

  5. I love your blog posts, as well as your wife’s! I have never had the honor of meeting Skylar or Alyssa, but feel like they are my kind of little girls. I am so happy that you have such a supportive community around you, but I feel I simply must say that you and Jen are a huge reason behind that. If I learned anything from the two of you, it was to embrace each and every person that comes into your life and accept and love them for who they truly are on the inside. You inspire people to be better than they thought they could be. Keep up the blog entries, I think you are makin a bigger impact than you realize with these posts. And Merry Christmas to you and your family!

    • Thank you so much, Betsy! I will say Jen and I always made a point of being social and friendly with parents of kids with and without autism at Sky’s school. We did this mostly because we genuinely like the people but also in small part because we recognize Skylar wasn’t capable of breaking the ice, so to speak, and things would be better for her there if she were popular with parents. I advise other autism parents to let guard down and always go extra mile to make sure their kid goes to every birthday party they’re invited to and school functions.

  6. love it! Thanks for the smile

  7. Keep up the good work! Love it!

    Joanne Doyle Kuzborski
  8. HI Sean – Thank you for the blog. I have never introduced myself to you, but I will. As a parent of a child on the spectrum who is in Kindergarten at the same school, I have seen our daughter have a tough go at the holiday shows. Thank you for your blog. It helps.

    • Hi Matt. Thanks for reading! I think the school is a lot better equipped to handle our kids nowadays than they were when Skylar started there six years ago so hopefully your daughter has an easier time of it during those shows as time goes on.

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