Autism Vox

Unheard Melodies: Rocking with Charlie

by Kristina Chew, PhD on May 6th, 2007

“Autism is a tragedy.” “It is a tragedy to find out that your child has autism.” “It is a tragedy that so many children today are being diagnosed with autism.” How often have you heard statements such as these? (Try here and here.) Or a reference to life with autism as “hell,” as recently mentioned on Scobleizer?

Yes, it is not always, or at all, easy to raise an autistic child. Yes, being the parent of an autistic child—of a child who is minimally verbal, far behind his grade level in his academic skills (Charlie still confuses the letters “B” and “D”), has self-injurious behaviors (under control, but the potential for these lurks). Yes, my expectations for success, achievement, etc., etc. , in my son’s life are far different from what they were before he was born. Yes, there are moments when the suffering that goes on around here could break your heart—-but it is not my suffering, nor my husband’s, that is so wrenching. It is Charlie’s suffering that causes the most ache.

I much thank Robert at Scobleizer for sparking an interesting discussion about autism, causes, cures, treatments, the spectrum. Robert notes that he wrote his post, My Parental Heroes, after speaking to Sridhar Vembu, CEO of Zoho; his company also runs Jambav, which contains free online games and teaching tools. The one part of the Scobleizer post that has been in my mind is this:

Anyway, early on in this conversation Sridhar turned to me and said something like “now you understand why I’m not worried about Google or Microsoft when I go home at night” and added that when you face something like this in your personal life that life at work seems pretty easy, even when facing challenges that the rest of us would think are pretty scary.

It is true, taking care of Charlie makes any worry about work, world politics, even global warming, of secondary concern. Our autistic children call on us to be with them, be for them, by their presence, and taking care of them eclipses what many think “larger” concerns.

Nonetheless: It is the case, I seek to represent life raising an autistic child, and autism, with more light than dark because, truly, our life with Charlie is filled with much more light, with a beauty that might seem strange at first and then metamorphizes into something seeringly fine like Bach’s First Prelude in C Major or the Beatles singing In My Life.

Lately I have been more than ever aware of the huge quantities of anxiety that seem to run through my boy. There is anxiety at happy times—my parents coming from California to visit—-and anxiety at sad times—when they went back home on Thursday. There is anxiety when the usual order of things is disrupted—Charlie usually has a Saturday morning ABA session but his therapist was not able to come, and the smile he woke up with faded fast into big-eyed looks at me, requests for “socks on! Michael barber!”, and frequent sallies into the garage to look at the car. (Jim and I decided to cancel our original plans of hanging around the house and we all drove off so that Charlie could get a haircut—he is now sporting a very nice buzz.) When Charlie is anxious, expressions like “tied up in a knot” make complete sense: He often wrings his long-fingered hands and, from the look of supreme discomfort on his face (still with so many traces of that baby I once crooked in the curve of my left arm), I can almost smell how unpleasant he is feeling, as if a stomach pain to end all others was coursing through his intestines.

I have traced this kind of anxious, nervous ache back to the start of some of Charlie’s most difficult behavior moments or squalls in the past. When he was 6 going on 7 going on 8, these got more intense, more frequent, worse. As Charlie in this time was growing into the long-legged guy (if I may, mensch) that I saw swaggering behind me while sipping the rest of his dad’s soda in an industrial part of Harrison, New Jersey (think prime Sopranos territory), worries about his “getting big” have frequently been raised. When the difficult behavior of an autistic child is mentioned, I have noted that that child’s weight is also often mentioned as if to say, it is going to get much worse, he is so big and strong now and he does not understand……. I am not going to get into details about Charlie’s physique, but I will say that I am not more than five feet tall and Charlie is almost as tall as me—we can switch shirts and shoes (not that I want him wearing my flats). But when I see him on the verge of becoming very, very anxious, I have learned not to show visible signs of worry, or to communicate them in any non-verbal way: Charlie picks up on these like a lightning rod.

Instead—as Jim and I did this morning—we go about our business and we even smile. “Cholly, I know you’re worrying and that is fine,” I said. “The schedule is out of order and I would be bothered too!” When we communicate (verbally; non-verbally) to Charlie that all is all right, he starts to move himself out of his worry. (It also helped that I discovered a container of watermelon that my mother had left in the refrigerator.) As I wrote, we smile and shrug and get on with the day: After the barber was a long bike ride over hill and down dale, Charlie leaning over the handlebars and pumping his legs, then a rush to make a 3.10pm train to Newark and a lot of walking, over the McCarter Highway in Newark to Harrison and the PATH train and onto Jersey City and Peacock Palooza, a “battle of the bands” at the college where I teach. Charlie first wanted a hamburger from the grill, relish, a roll, more relish. “Pickles!” he told me and I pointed out that he’d eaten enough for the moment: “Let’s listen to the music.”

And he did, and began to race-pace back and forth while students danced and moved, and we left late to race-walk down Kennedy Boulevard to catch the PATH and then our train back home. And laughing.

“‘We need to find a structure where Autism is the obstacle and the subject are the people,’” Trisha Regan, director of the film Autism: The Musical is quoted as saying on communicates via music, via song and melody—and, as I have been learning, it is something about his being autistic that is part and parcel of his musical communication and even ability, rather as if—perhaps because language eludes him—-music is something that Charlie is particularly able in and responds readily to.

It is thanks to Charlie that I have learned how much music says. To quote the words of the poet John Keats in his Ode On a Grecian Urn:

Heard melodies are sweet, but those unheard
Are sweeter; therefore, ye soft pipes, play on;
Not to the sensual ear, but, more endeared,
Pipe to the spirit dities of no tone.

I do not know what unheard melodies are brewing in Charlie, what pipes he listens to, and bends his ears to. I do know that there is a kind of poetry to any, every day with Charlie, and that, when I stopped worrying about “curing” and “recovering” Charlie from autism and tuned my ear to hear his melodies (sung; unsung) themselves, he started to do better. The SIBs began to fade. Talking came, more and more, and peaceful easy feelingness. The comedy of life with autism became what it was all about.

“[H]appy melodist, unweari-ed, / Forever piping songs forever new,” writes Keats: Here’s to the songs sung and yet unsung by my young musician, melodist, and mensch. Life with autism is teaching me to hear those sweeter, unheard melodies. Maybe the start is kind of rocky but let me tell you, once he gets going, this boy of mine can really rock.

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