July 21, 2012

The Boss

“I have to return Born in the U.S.A. to the library today,” I told Ben this morning as he put his shoes on. He’s been falling asleep to the title track on repeat for the past two weeks, and I wanted him to be prepared. Little does he know that for his birthday tomorrow, we’ve bought him a three CD Springsteen collection. That and pebbles for the bottom of his fish tank.

When I think of where he was a year ago – when I think of where I was a year ago – I can hardly believe we’re the same people. On his fifth birthday, I was exhausted and depressed from nonstop occupational therapy. He was out of control, sometimes needing to be pinned down while we told his siblings to run out of the room so he couldn’t hurt them. I didn’t think it would ever end: he’d never learn to plan more than one step at a time, he’d never learn to self-regulate, we’d never be able to enjoy one another as a family.

Look, he still has issues with impulse control, and he sure as shootin’ still has intense sensory needs, but he’s come a long way, baby. Part of that is because we’ve learned more about how to parent this very special child. We’ve come to accept that his cognitive needs are incredibly high, we’ve learned to meet some of his sensory needs. But more of it is him.

This boy has worked so hard. So hard. Watching him struggle to self-regulate his stimulation levels and to control his aggression has filled me with awe. Yes, he’s incredibly gifted in about a hundred ways, but what I’ve come to realize in the last year is that it’s not what you do with your gifts that matters. It’s the way you overcome your limitations that defines you as a person.

This thing he does with music is crucial. I only partly understand by analogy to the way I relate to books, but it’s so separate from my experience that the best I can do is respect his relationship with music. He folds himself up inside of the song, pressing himself into the music. He pulls it apart, deconstructs it from within, pulling the patterns to pieces in some mathematical way I cannot understand, then putting it back together in his mind. He told his piano teacher he sometimes sees colors when he hears music. I’m not a part of it – except when it’s time to discuss lyrics – but I find it so beautiful.

We got in the car to drive to camp – where he’s again trying so hard to control his physical reactions to other people – and I stuck in a new CD I bought yesterday. “What’s this?” he asked as the music began.

“Just wait,” I answered, and a moment later, the singing started.

“Oh, it’s Bruce Springsteen,” he exclaimed.  Now, mind you, it’s a Springsteen album he’s never heard, from almost three decades after the songs he knows, but within the first few words, he recognized the voice. I tell you that not because it has any deep meaning, but because he’s my kid and I can brag about him if I want to.

After I dropped him and his brother in Boston and then turned around and brought Lilah to her preschool camp, I could finally turn off the music and listen to the news. And that’s when I heard about the shooting in Aurora.

Any day I send them out into the world, they can be hurt. Whether I’m with them or they’re alone, something can happen to them. There’s nothing I can do about that. The best I can do is watch as they grow into the types of people who can make a difference in the world.

Tonight, on the eve of his sixth birthday, I held him close. “You’re special,” I told him. “You’re special because you can use your mind and heart and strength to help other people.”

On his stereo, Springsteen’s “We Take Care of Our Own” played loudly on repeat.

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  • Reply Karen July 21, 2012 at 1:13 am

    This made my heart sing!

  • Reply Marnie July 21, 2012 at 2:51 am

    Lovely post. Happy Sixth Birthday to your son! Also I wonder if Ben seeing colors when he hears music is connected to synesthesia. I read the YA book, A Mango-Shaped Space, years ago in which the main character has synesthesia and I found it enthralling.

  • Reply K July 21, 2012 at 11:44 am

    I came to make essentially the same comment as Marnie. Happy Birthday to your son! There’s a specific form of synesthesia called chromesthesia in which people see color in response to music.

  • Reply Lilian Nattel July 25, 2012 at 10:45 pm

    Happy birthday to a brave little guy and his brave mom.

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