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.

Thursday, April 1, 2010

The Month: Autism Awareness Month

It's April. Time again for Autism Awareness month. It's also time for a new book about autism.

It used to be, when I thought of former USC quarterback, Rodney Peete, I thought of him as he's shown in this clip - getting leveled by Notre Dame's Frank Stams.

(Here's the link if you're reading this in a note on Facebook).

I wonder if Rodney had a Frank Stams Awareness Month after that? Ah, yes. The glory days of Notre Dame Football. So long ago.

Now, Rodney and I - along with many, many fathers both known and unknown - are members of the same team. The team of autism fathers.

This Saturday, Rodney's new memoir Not My Boy! will be released. What a great title. You can imagine a father saying those words in defiance, in a fit of denial, or while pleading to God with tears streaming down his face.

Or all three.

Having read the prologue and the first chapter on Amazon, I can say without hesitation that I'm excited to read this book. It appears he has taken a head-on approach - warts and all - in discussing his experiences with his son RJ's autism.

It's been a while since I've read an autism memoir. I had read too many as I was writing my own and after a while I found it too overwhelming. It was just too much. I needed a break from it. I recently read a chapter from my own and found it to be a bizarre experience. It was as if I was reading someone else's story. I'd written when my wounds were fresh, much fresher than they are now. I was angry, angrier than I am now. And I was still in denial, much more than I am now. Writing that story helped me transcend all of three to get me to where I am now. All of us need something to get us across that chasm of anger, fear and denial. I chose to write a memoir to do it. So did Rodney Peete.

According to Publishers Weekly, Not My Boy! Rodney recollects his "golden memories of a supportive father's role in his successful life, he imagines a similar time with his son, R.J., but everything changes for the worse when R.J. is diagnosed with autism at age three. His marriage almost collapses under the weight of the diagnosis while his valiant wife, Holly Robinson Peete, emerges as the child's advocate amid Rodney's overwhelming anger and denial, ultimately triumphant in getting R.J. the proper attention. This invaluable parental primer on guiding an autistic child through the medical and therapeutic maze along with strengthening a besieged marriage will give renewed hope to all those in the same situation."

In other words, RJ's diagnosis was a lot like Frank Stams. Rodney never saw it coming and then it knocked him flat on his ass. Then it jumped on top of him and pinned him into the ground. But eventually, he got back up. It just took a helluva lot longer and was a helluva a lot harder than it was to get back off the Coliseum turf in 1988.

Go watch that clip again. That's what it was like as a father hearing that diagnosis.

But we got up.

Way to go, Rodney. This time, I'm cheering for you. Except on November 27th. Then, for a day, we'll be rivals again. On November 28th, I'll be back in your corner.

Here's the link to buy the book on Amazon. (click here)

Here's the link to the Autism Society of America's page about Autism Month. (click here)