October 21, 2016 at 6:00 AM
It's 6:45 a.m. on a Tuesday as these words float across the dining room table. My daughter has already finished eating, but my son, Nico, is happily listening to music while consuming an enormous bowl of Cheerios. As usual, he's set the iPad to "Hamilton."
My son is what professionals call "functionally nonverbal." He can talk. He does so all the time. But you, and to some extent I, cannot consistently understand him. He has Down syndrome, and like many people with the genetic condition, his language development is generally delayed. More specifically, though, Nico also has apraxia, which makes planning the muscle movements involved in speech difficult for him. He rarely articulates initial consonants, or, for that matter, final consonants. Instead, his articulations tend to feature mostly connected vowels which one becomes accustomed to decrypting from context.
There are exceptions. The initial "n" in "no" is perfectly clear. He's had a lot of practice.
Nico's life is rich with language in many forms. Along with his oral speech, he signs and uses a speech app on his tablet (it's a communication program in which he selects words and icons, or types out words, and then taps them to have them said aloud). He reads, either silently or by touching each word with his finger and saying them out loud. He speaks all the time, and together we — and by this I mean Nico, his family, his teachers, his classmates, his community — all work very hard to develop mutually intelligible pathways of communication. The effort to find ways to communicate belongs to all of us, not just to a person whose communication methods might be atypical.
While he's always liked music, our habit in the past year of regularly providing him with a tablet with streaming music at mealtimes has created a new way to communicate. He's always needed distraction to help him eat (long story, don't argue), but now he just loads up Amazon Music, scrolls to "recently played," and starts surfing. Initially, following his parents' likes, he picked perky pop songs, thrashing Irish rock, or banjo and fiddle-heavy bluegrass.
But then I downloaded "Hamilton" one day after it became free to listen to it on the way back from a late-night gig and see what the fuss was about. A few days later, Nico played it, and rather than instantly turning away from the rapid-fire rap and erudite wordiness of the musical, he seems to have joined much of America in being hooked.
Nico engages with "Hamilton" as language, not merely rhythm and beat. He chooses a setting in which he can watch the lyrics move, tapping them to repeat key phrases he especially likes. He laughs at the jokes. He makes jokes. When he said "Awesome! Wow!" he mimicked Jonathan Groff (who all parents know as the voice of Kristoff in "Frozen") pretending to be an English king pretending to speak with an American accent. Nico had never said that line before, and when my head jerked up, he was giggling at me, ready to join in my laughter when it came. We laughed together before I went over to hug him.
In fact, his ability to tell jokes around music seems to be empowering, allowing his natural sense of humor to flourish in ways more sophisticated than a good tickle. He grabs at a moment in "Hamilton" when he knows he can get a laugh. When the men of the show all sing, in unison, "With the ladies!" Nico does, too, raising his hands in the air and urging us to join in. Before "Hamilton," he found a moment in "Death Valley Queen," a song by the Irish rock band Flogging Molly (I'm an Irish rock musician), when the music surged from quiet to scream to the lyrics, "I have always loved you." Nico would sit, fist in front of his face, poised like Rodin's Thinker, then surge to his feet and shout, "Rock and roll!" as the music crested.
October is Down Syndrome Awareness Month. I'm not a big fan of disability awareness campaigns, generally, unless they lead us toward accepting people for who they are, for tearing down our own internal ableist narratives about normality or function. That's my goal here, to take an anecdote about the surprising role played by streaming music technology that has allowed my son to reveal new depths of understanding. But those depths were always there, he just hadn't shown them to me, or I just didn't see.
The day after the first "Awesome! Wow!" incident, we were walking to the bus stop and Nico was making a lot of noise. His hands were up, he had a little hip shimmy as he walked, but I couldn't figure out the context. Then I caught the rhythm and said, "Shaboom?" He said, "Boom," and he smiled, realizing I knew he was singing "Hamilton's" "Right Hand Man." He signed by touching his fingertips to his chin, and verbally said, "Thank you."
He seemed pleased I was finally getting better at listening.
David Perry is a history professor at Dominican University in Illinois, and a freelance writer who focuses on disability issues. He can be found at How Did We Get Into This Mess[thismess.net] and on Twitter @lollardfish[twitter.com].
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