Autism and the Holidays
Parenting an autistic child is sometimes like parenting a typical child; we have our good days and our bad days and ups and downs within those days. Like all children, autistic children have unique quirks. However, the quirky behaviors are so egregious that autistic children are often disinvited to participate in normal parts of life. The parent’s role is to determine what types of things are important for the child to experience and what accommodations would support him or her in doing so.
2e Child During His Holiday Performance
Last week was my autistic son’s first grade holiday musical performance, which is a normal childhood/parenthood experience. My son, let’s call him Tigger, loves to perform but being part of a group is, and always has been, an abnormally stressful thing. This is how it went.
It was a lovely, but not terribly remarkable, autumn afternoon. I left my daughter with her grandparents, who were visiting for a long weekend, to fetch my son from school and take him to his karate lesson. My phone rang fifteen minutes after school had let out. It was his music teacher.
First, this is our family’s autism. A large group of people who are expected to act in unison – whether sitting quietly and listening or standing together reciting pledges at karate – brings forth my son’s first-best self-regulating technique: stimming. Jumping, punching himself in the head, flapping his arms, spinning in circles, shaking his head vigorously left-right-left-right, and rolling on the floor are his go-to behaviors. Since he is gifted, he turns them into games or material fit for being the class clown. Flapping arms become part of a harvest combine; his spinning body is a tornado. At this age, punching his own face and falling down is received as physical comedy by his peers but is, I suspect, his way of capitalizing on his need to give himself more information to process.
Second, he had been teased to tears during his kindergarten performance a mere six months earlier. His need to self-sooth was probably, in part, because he was feeling those feelings again.
His music teacher listened. She exclaimed that there is no reason for him to endure teasing and sadness during the performance. She also expressed sincere hope to include him. The performance is an important part of the music curriculum and she would love to have him participate but not to his detriment nor to the detriment of his classmates.
I assured his teacher that I would talk with him. We would devise a plan and arrive early to the concert so we could pitch it to her. She agreed to be prepared to be flexible and patient.
When I hung up the phone I felt the familiar anxiety of parenting my sensitive and single-minded child. Thoughts raced through my head. Would he be open to talking about it or would he be defensive? Would he want to perform in the concert or skip it? Would he be amenable to making a compromise with me and his teacher about how he would participate? Was I cramming too many things into the evening (pick-up, karate, dinner on the go, concert)? Intuition fortified me. He seemed comfortable and happy, ready to have a solutions-focused discussion with me. I was optimistic.
So I began. “That was your music teacher. What can you tell me about music class today?” He replied, “I had too much energy!”
While my son did karate, I sent messages to my husband and my parents: I had received a phone call from the music teacher. I might have to be backstage; they would probably have to enjoy the concert without me.
After karate, we scarfed dinner in the car on our way back to the school. I asked my son if he would like to perform in the concert or skip it. I was glad he wanted to go. My whole family was looking forward to watching him sing and dance with his classmates. We still had to make a plan.
I opened with, “Let’s make a plan so you can be successful tonight. Where do you want to stand?”
“In my normal spot,” he replied. He wanted to do exactly what he had practiced at school.
“What will you do if you need a break?”
After a while, I offered, “What if you come down off the stage and we take a break together?”
“Where is a good place for me to sit so you will find me when you need me?”
He launched into a detailed description of the stage, the audience, and tried to explain to me where I should be. I waited until he was done and said, “When we get there, will you show me?” He said, “Yes. Can we listen to the audiobook now?” and I took it as my cue to be quiet.
When we arrived at the school the sun had set, the temperature was cooling, and light from street lamps blended with light from the rising full moon. I parked at the end of a long sidewalk. Together we ran toward the front doors laughing and smiling together. Then we walked inside and searched for his music teacher. The theater, which doubles as the cafeteria, was buzzing with noise and energy. More than half the students and their families had also arrived early.
My son’s music teacher greeted us with a smile and listened to our plan. We all agreed that I could get an extra chair to place at the end of the already-full first row. I found my place while Tigger scrambled to his – three rows up the risers and smack dab in the middle of the crowd of squirming children. His squirming was a little more spirited than other kids and they afforded him the space he needed. I felt at ease while I watched him smile and laugh with his classmates.
Then the teacher signaled her students to be quiet. It was time for the show to begin. I held my breath in suspense. How would things unfold?
To start, my son quieted with the rest of the children. I allowed myself a first sigh of relief.
He was working so hard to be there and I was, too. I wanted to allow him the chance to be part of this quintessential childhood experience so I held fast to my seat. By offering big smiles and thumbs-up at every opportunity, I was showing him that I was confident in him and proud. He could see that I was there for him if he needed me. But I hoped that the stage lights shining in his face helped hide the paradoxical tears brimming in my eyes.
Then he did something that made me laugh out loud and turned the tears in my eyes from tears of breathless uncertainty to tears of joy.
There were no hand gestures to accompany the second-to-last song. All the children stood (sort of) still and sang except Tigger. He became the embodiment of an exclamation mark. At the climax of the song, he extended his arm and pointed to the audience like a rock star. Then he pulled his closed fist to his chest and turned his body in an energetic and tense dance pose.
I laughed out loud. A teacher standing behind me laughed out loud. The person sitting beside me laughed, too. My heart was lighter.
The concert ended without incident. My son bounced to me with a smile. I gave him a hug and said, “You did it!” His teachers approached me and exclaimed with relief, “He did it!”
“He did it” is no small accomplishment for my twice exceptional child because for many years he could not do it. His stimming used to be so disruptive that we were asked to leave library story hour, turned away from preschools, and asked to leave my gym’s childcare. Since his diagnosis, he has worked weekly with occupational therapists, speech therapists, teachers, paraeducators, coaches, counselors, and tutors. With their guidance, he has learned and continues to learn how to identify and solve problems based on his unique experience of the world.
My job has been to try to understand his unique experience of the world. In doing so, I am able to act on his behalf as an arbiter. I bring to bear my expertise in my son and my expertise in life to liaise, just like I did for his first grade music performance, toward a successful outcome. One that deserves a hearty celebratory exclamation: “We did it!”
When we succeed, I send a prayer of gratitude to each of people who have helped my child and helped me guide him toward the mainstream world with his essence intact. It is a veritable village that includes the aforementioned professionals but also includes my family, my friends, and my child’s friends’ parents.
This season, in addition to my personal village, I am thinking about those other parents and caregivers watching their quirky child in a holiday performance. My heart knows that in every audience there is someone holding his or her breath, hoping that years of therapy and loving parenting will carry their child to the end of the performance without incident. A parent who is quietly hoping to say “you did it!” to her child that day and everyday.
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