Saturday, April 10, 2010

The Song: Living With it Every Day

An excerpt from the memoir Kicking and Screaming:

The trip to Autism World is a one-way journey. It’s one thing to accept the diagnosis; it’s another to accept the permanence of our new life. We’re not tourists. Our trip to “Holland” (or Mars, for that matter) wasn’t a vacation. It was a relocation. We’ve unwittingly become residents of this strange new world – a world where nothing is straight forward.

We’ve learned this is a life of trial and error. It’s hard to get into specifics about what to do in the future because we remain challenged about what to do now. Every child is different, and what worked yesterday might not work today or tomorrow. We’re learning every day. Each day is either a triumph or a setback or a mixture of both. We’re making progress. However, I’ve got to be careful not to enjoy successes in some areas at the risk of ignoring important needs for improvement in others.

Even two years later, those opening paragraphs from the chapter titled Living With it Every Day ring true. I've treated Autism World as the new place we live as a result of this diagnosis. We have had to learn to adapt to what it's like living in this place as if we've physically moved to live in a different country. A different language. Different customs. Different rules. It's all there.

After writing the chapter, I tried to sum up my feelings in a song by the same name. The song is a vague reference to my experience with autism - so vague that Joy didn't catch it at first. I wrote it slightly in the vein of Harry Chapin's Cat's in the Cradle, whereas I tried to make each verse reflect a chronological step forward in life. But there are a few lines that specifically reflect how I've felt about this.

Both the lines old thoughts that couldn't be and I can't read the lines of my life refer to the same aspect of receiving an autism diagnosis: the dashed or challenged dreams.

I had no idea until the moment we received the diagnosis just how much of our kids' lives we script in our mind. We imagine them going to school, graduating, getting a job, falling in love, getting married, having children, etc., etc. We create these imagines with amazing depth and texture. The autism diagnosis erases all of them. That doesn't mean that those things won't happen. But to have all of them put in doubt is a very painful loss.

I can't embed the mp3 player without blasting your computer with music, so here's the link to my old MySpace page It's the fourth song down.

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