This guest post is by Jane Kim. A writer and mom of a nine-year-old with autism, she works in the field of immigration and lives with family in the Philadelphia suburbs. Find Jane on Twitter @JkimRites.
It’s often hard to venture out and try new things when your child is on the autism spectrum. Unexpectedly, the pandemic gave us extra courage to step out of our comfort zone and establish new routines.
Playdates, celebrations, the shuffling to and from lessons and sporting events were never an ingrained part of our routine. For almost a decade, my family has established our own routines. My son, T, was diagnosed with Autism Spectrum Disorder (ASD) at age three. When he was a little kid, we had a team of therapists that would visit our home. When T started school, most of those therapies transitioned to school, so after school and on weekends, we spent time outdoors hiking, visiting playgrounds, riding scooters and biking. When the weather was colder, we read, played board games and listened to music. There were few playdates. Reflecting on our lives back then, the activities that filled our lives in our free time mirrored those that many pursued during the pandemic.
Then in March of 2020, the pandemic was upon us. With racial injustice, death and social and economic disparities on our collective conscious, we learned to be kinder to each other. Months into the pandemic, I felt the shift. People said thank you and showed up bare-faced on Zoom meetings. Life slowed down long enough for us to ask each other how we were doing, how our families were doing and to listen and to give real answers. The vulnerability in those answers often gave me new appreciation into the struggles they were facing. Life right now is tough, but we’re in this together. We’ll get through this. The pandemic provided a bit of a respite from the lack of participation in All the Typical Things a 9 Year Old Does. It demanded isolation be the norm, and it took time to recognize that feeling I had been missing for so long: We were now part of the group, sharing the same experiences.
When the world started to open up again and much of our community was vaccinated, I spoke with T about some ideas I had, based on his interests. He was all in. In the fall of 2021, T began group swimming lessons and joined a choir. I could not have imagined the support and camaraderie that would come next — only that I won’t know for certain if it would have occurred without the backdrop of the pandemic. Regardless, I am filled with hope that when the right people enter your lives at the right time, inclusion can happen organically.
T joined a group swimming class. The pool was indoors and heated, with bright citrus colors on the walls. There were many lanes, with each class occupying a lane. It was loud, splashy and fun – all the ingredients needed to feed a kid’s soul during a pandemic. T made progress the first 3 months, and then he stalled. After a couple more weeks, I spoke with one of the instructors about giving him an extra push, as he often needs that to get to the next level. She told me they would keep a closer eye out on how he was doing next class. When T arrived for the next class, he was instructed to go to another lane. She encouraged, cheered and taught T one on one for the entire class. By the end, I was in disbelief – I had never seen him swim at that level. She had taken the time to see his abilities and trusted he could do it. Since then, he’s had more individual lessons, unprompted by me.
T also joined a group choir. In speaking with Rae Ann Anderson, Director of the Children’s Choir at Settlement Music School, about T and the novelty and uncertainty of fitting in with the group, she said, “Let’s give it a try.” T auditioned and promptly became a junior choir member. Practices were weekly, for an hour in the evenings, and they were fast and furious. T was assigned a seat in the front row, in an effort to minimize distractions and so Mrs. Anderson could provide more guidance if needed. Sitting outside the auditorium in the lobby, craning my neck to see what and how he was doing, was futile - I needed to get more comfortable with not knowing. Over the course of 5 weeks, I witnessed snippets of T learning the ropes: Mrs. Anderson would subtly point at a section in the sheet music or put a hand on T’s shoulder if he was fidgeting too much.
T’s laughter could be heard as the group warmed up their voices with zees and zoos, and then an older choir member helped T assemble his music in a neat package at the end of the practice. At home, I’d overhear the occasional Hebrew stanza. The practices would culminate in a Spring Concert, where four other choir branches would all participate. In addition to the weekly practices, combined monthly choir practices started in January. They were two hours, with about 70 choir members. I spoke with Mrs. Anderson and gave her the heads up that T may leave after an hour, and we would play it by year. T remained engaged in practice for about an hour and a half. But then he saw Mrs. Anderson conducting and wanted to be a part of that. He stood next to her, and for the rest of the time helped her do her job. Many of the kids gave him a thumbs up and continued singing. And he continued singing as well, just from a different vantage point.
I will look back on the pandemic with an array of emotions. But most notably, I will remember taking that first step to venture out and establish new routines — and being embraced and supported during a time of isolation.
At the end of every choir practice, the song is always the same:
May you go in peace and joy,
May you be surrounded with love.
May your days be long, seasoned with a song,
May you always go with peace and joy.
Wishing this for you and your families as we enter spring.
A special thank you to Goldfish Swim School in Media, PA, and Rae Ann Anderson, Settlement Music School.
