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October 10, 2018
José Manuel Simián
Community Voices
A little girl leans on a bar in a dance studio. She looks off camera wearing a blush pink leotard.

Music has been a part of Levi’s life since the beginning. Even before we found out she had developmental disabilities, my wife and I would often sing our kids – Levi has two older siblings – to sleep, and she would light up and move to music she liked, even though she was struggling to learn to walk.

As years have gone by and Levi has grown (she’s 5 now), songs have continued to be a source of joy and entertainment for her. She loves music to the point of obsession, listening to the same artist, song, or album day after day until she moves on to the next one.

First, it was Barney. Luckily for us, this stage passed, and we were soon onto the Frozen soundtrack, which was followed by a long ballet stage centered around the Nutcracker (Levi can literally sit and listen to the whole ballet while picturing it in her head) and, more recently, the soundtracks to Moana, Coco, and Annie.

Over and over again, we would play and listen to the same songs , experiencing something all parents, including those of neurotypical kids, have lived, albeit more intensely: that you can start appreciating and liking music you hated at first just by sheer repetition. And, yes, I know what you may be thinking: repetitive behaviors are common in kids with disabilities – Levi has been diagnosed in the spectrum – so there is nothing special to this, but I would stop you right there.

Levi is extremely sensitive to music, more than most kids, to the point that she “lives” it the same way some of us follow movies or a book, giggling in joy at a great horn arrangement as if it were a plot twist, requesting songs that match her mood (“I want scary Coco!”), being able to take ballet classes (hat tip to the amazing program Ballet for All Kids!), and very often, singing much more articulately than she can speak. In many ways, music seems to light up her brain in ways other things don’t, while dancing is an activity where she can find much-needed success easier than at most other physical or cognitive tasks. And while her siblings, Luca, 10, and Maité, 7, understandably get tired at times of listening to the same soundtrack for the third time that Saturday morning in a tiny apartment, music is also a way for them to connect with her in ways language or simple games sometimes fail.

I hadn’t realized how deep this connection was until a few days ago. I was bringing the three of them back home on the back of our family-size bike through some cobbled Brooklyn streets. The sun was setting and they were clearly enjoying themselves, just three kids on the back of a bike while their father pedaled away and dinner was on the horizon. And then, out of nowhere, I heard it: Luca started singing “Tomorrow,” the optimistic anthem of Annie, first almost as a joke, then earnestly. Almost immediately, Maité and Levi joined in, their three voices finding their way together – at first in surprise, then in pure joy. And as the bike rolled down the street and I tried to record them on my phone without killing the four of us, they kept repeating the chorus over and over again, and at that moment I knew we were all together in this, and we’d keep pushing for Levi day after day, as long as the sun would do its job and keep coming out.