Many parents know the particular stress of boarding an airplane with a baby, a toddler or, worse yet, both. Packed at the ready are pacifiers, snacks, favorite toys, iPads with downloads for the toddler. When my children were still of nursing age, I wore loose shirts so I could face plant a whimpering infant to my bosom in T-minus three seconds.
Having nowhere to go with a noisy child, parents on an airplane become like low-expectations party hosts. They aren’t trying to make everyone’s flight great, they just don’t want people to have a bad time. The parent holding a fussy, noisy baby is keenly aware of each sideway glance, shaken head, grumbling and, occasionally, outright nasty comment.
If you’ve ever been that parent on an airplane, you pretty much know how it feels to take a child with an intellectual disability to a live performance. We want to share the experience of concerts and theatrical productions with our children, but do not want their behavior to compromise the event for other audience members.
Each year there is no shortage of festive performances in Akron in December. My youngest son, Leif, is 14 and my only daughter, Lyra, is 12 and, as regular readers of this column know, she has Down syndrome. The first event we attended, along with their father, was Handel’s “Messiah” performed by Apollo’s Fire at St. Paul’s Episcopal Church. Most know the “Hallelujah Chorus” of what is an otherwise beautiful but long opera. Lyra and I missed the “Hallelujah Chorus” because it occurs after the intermission.
From the beginning, Lyra, who sat between her brother and me, fidgeted, flopped around in the pew in the back balcony and made quiet comments. Two people offered us cough drops when she began fake coughing. Lyra enjoyed the music, but with little to look at the performance is challenging for children with or without intellectual disabilities. As Lyra and I put on our coats at intermission, people seated near us said, “Please don’t leave on our account!” I felt a sense of relief that caused me to realize how stressed I’d felt trying to keep Lyra quiet and still.
In mid-December we attended Ohio Shakespeare Festival’s “Every Christmas Story Ever Told” at Greystone Hall. It is reminiscent of “The Complete Works of Shakespeare” in that it smashes several stories into one athletic performance involving frequent instances of audience participation. Seated in a front row of the thrust theater, Lyra was engaged by the actors’ antics and it was impossible for her laughter and movement to bother anyone.
Less formal than the Handel opera, but more so than the play, we also attended Akron Symphony’s holiday pops concert at EJ Thomas. Lyra is a pro at the concerts because last year my then-boyfriend and I had season tickets for us and the children. Akron Symphony is an arts gem in our community that, in my opinion, does not get the attention and plaudits it deserves. The concerts are varied in many and often surprising ways, while the conductor, Maestro Christopher Wilkins, marvelously engages the audience between pieces.
Children with intellectual disabilities commonly also have sensory issues, which manifest differently. Some desire sensory input and want to wear tight-fitting clothes. Others, like Lyra, are the opposite. At a symphony concert last March, Lyra chose to wear sparkly blue leggings under her dress. Seated in the center balcony, Lyra soon began rubbing her legs. “They’re itchy, ” she whispered. After asking three times if she wanted to remove her leggings, Lyra agreed.
While the symphony’s talented musicians transported the audience with the heavenly sounds of Bruckner’s Symphony No. 4 “Romantic,” Lyra and I performed something a little more Gypsy Rose Lee. From our seats I removed each of Lyra’s shoes. She then lifted her bottom and slid the leggings down. I pulled one, then the second leg off of her before slipping back on each shoe. Though we were stealthily quiet, anxiety sweat beaded up on my brow.
At the recent Holiday Pops concert, we walked past a young girl and her family to get to our seats in the same row. The child had fidget toys, was waving her arms and wouldn’t put down her legs. “Don’t worry, I’ll step over them, my daughter with Down syndrome is seated just ahead with her brother.” The girl’s mother mentioned her daughter’s autism.
The girl make a sound or two during the fun concert, but when I looked down the row during the final sing-along the family was gone. I found them in the lobby after the concert and went to tell them that their daughter was not disruptive. If someone can’t hear a child happily hoot during “Sleigh Ride,” it is perhaps they who should skip the concert.
All children learn proper public decorum by being in public, whether it’s how to act in a restaurant or a live performance. Yes, if my child becomes truly disruptive, I will remove them. Most parents of children with disabilities err on the side of caution because we fear anger and rejection are close at hand.
The audience at St. Paul’s for the “Messiah” production modeled the behavior of acceptance and grace. I encourage everyone to do the same, and not just passively. Display with smiles and words that all are welcome. For remember, we are all on the path to disability.
This was first published in the Akron Beacon Journal on Sunday, December 29, 2024.
Whoopsie Piggle 