Casualties of War

Excerpted from the Book "Autism, Heartfelt Thoughts from Fathers"

I’m sitting in my living room on a cold January evening, listening to the wind and staring into my computer’s blank screen. It has been well over an hour, but my mind won’t budge. I’m working on the lyrics to the final song of an album that tells stories of parents raising children with autism. There are 11 songs in total; the first 10 were difficult, but they’re done. This last one, however, is fighting me tooth and nail.

The song is about the traumatic impact that an autism diagnosis can have on a parent. The words swirl around me, but never come together. I sometimes come close, finding a phrase, even a single word. But when I begin to write, I’m overwhelmed. Every attempt is a glance into four long, painful years.

I remember sitting in a hospital room, staring down at a linoleum floor, while a cold voice says the words, “your son has autism.” I see my son, strapped into a booster seat in our living room, a wooden shape toy on its tray. I’m kneeling before him, urging him to connect. “Hey Buddy!” I say, hiding a mounting panic. “Look at me! Where are my eyes? That’s it. Good job!” I see a school administrator talking at me, my boy no more than a line item. I want to lash out, but heed our attorney’s advice. “Never raise your voice. Ask questions. Gather data.” The stress is unbearable.

I’m pulled from my trance when my wife returns home from a get-together with friends. I ask her about the party; she recounts a story from a woman whose brother had recently returned from a tour of duty in Iraq and was having a difficult time re-adjusting to civilian life. Apparently, he could no longer relate to those who were not there, who didn’t understand what it was like to come so close to the edge, day in, day out. Her brother, she said, was a different person, distant, humorless…a stranger.

And there it was, the experience of raising a child with autism. It is war, struggling to stay sane in a world that has gone insane, and watching yourself slowly eroded from the strain of it. It is knowing that the life you once knew has been blown away, replaced by one in which you fight constantly, for your child’s life and your own peace of mind; fighting insurance companies, school systems, unethical practitioners, bullies, even friends. It is trying to hold it together while people who have no idea how hard you’re fighting give you answers without knowing the questions. It is the awful realization that you’re alone, banished, different, adrift in a sinking rowboat, watching the world pass by on yachts, waving and wishing you luck. It is an urgent, desperate need for justice and retribution that you know will never come.

And so I wrote. I had found the elephant in my room; it was anger, overwhelming and fierce. I couldn’t write the words because I couldn’t bear to see them, to face the anger of a father of a child with autism. I was supposed to be my boy’s protector, but I could not protect him from autism, and the problems that he would face throughout his life as a result of it. All I could do was fight. But that fighting, as it did for the soldier, had taken a part of me that I knew I’d never see again. It was innocence, the feeling that the world was filled with an endless string of beautiful tomorrows.

Here are the words and music that became the song "Surrender"

Writing this song, and the others on the album What Remains, proved very therapeutic. Reading the words I’d written showed me that I had a lot of work ahead of me if I was to find some peace. But feedback from other parents has shown me that these feelings are real, and fairly common among parents raising children with autism. We are all casualties of war. And though it is a just war, and worth the fight, the experience changes us. We are stronger, wiser, and more compassionate. But we are also sadder, more suspicious, and angry. Such is the price of war.