Tuesday, March 3, 2009

The First Step: Publish a Post on Your Blog

Growing up in Western New York in the age of above-ground swimming pools without heaters, I'm accustomed to swimming in cold water - at least I used to be. The key to swimming in cold water was simple. Just jump right in. If you don't, someone's just going to push you in anyhow.

At first, you experience the initial shock, wondering why in the hell swimming in this godforsaken water was so damn important in the first place. After a while, your body starts to adjust and the shock wears off. Before too long you're enjoying the pool as much as you'd enjoy it if it was 80 degrees (my new lower threshold for swimming). And by the time you get out, you wonder what the big deal was all about in the first place.

Nearly every milestone I've achieved along this reluctant journey into the world of autism had to be approached like I was going to swim in cold water. Sometimes I stared at that water for months, even years, before deciding to jump in. Once I was in, my head started to adjust and the shock wore off. However, I've never wondered what the big deal was all about.

A little background.

In February of 2007, my son Robbie was diagnosed with Pervasive Development Disorder - Not Otherwise Specified or PDD-NOS, which,
when it was first explained to me, sounded like some kind of autism catch-all diagnosis. My opinion has changed little since then. "PDD-NOS is a high-functioning form of autism", is the second best explanation I've ever read to describe it. The best belongs to Robert Rummel-Hudson, author of Schuyler's Monster: A Father's Journey With His Wordless Daughter. When his daughter was diagnosed (incorrectly) with PDD-NOS, he didn't find the definitions any more helpful than I did. As he eloquently stated, PDD-NOS from the vantage point of the one giving the diagnosis appears to mean: "beats the sh*t out of me but I am a PhD from Yale so I can say that."

When my wife and I received the diagnosis, I was in deep denial about the entire situation. Prior to that, I had gone along with the difficult decisions we needed to make up to that point, such as to have Robbie evaluated in the first place and send him to a Preschool Programs for Children with Disabilities (PPCD) school
, but those isolated events had no effect on my overall attitude. In my mind, this autism thing wasn't real and all of this autism talk was going to go away soon. He's just Robbie. That's all. As a result, there's no reason to tell anyone about it and needlessly hang this label around his neck for the rest of his life.

In November of 2007, I had my first conversation with another father "in the same boat" - an event I had avoided from the minute I'd heard the word "autism"
two years earlier to possibly describe Robbie's condition. After I gave this father, a college friend and former Notre Dame Football player, the background of our situation and asked him for some advice, the first words out of his mouth were just what I needed to hear and opened the door that had trapped me in my denial for so long:

"Sorry to hear that Bru (my nickname), but I know what you're going through."

"I know what you're going through." That was the magic phrase. After that conversation, I began to slowly emerge from my isolation and begin my journey, which has included frustration, acceptance, connection and even a book. Making that first connection with another father of an autistic child helped me begin to open up about the topic I'd hidden from for such a long time and to understand how important it is for fathers to interact with others like us who "get it".

The idea for doing a blog about fathers and autism hit about a year ago. It sounded like a good idea at the time but I was terrified to do it. I stared at that icy water for a long time before jumping in and now that I've done it, I have to admit that the water is pretty damn cold and I'm still waiting for the shock to wear off.

Nonetheless, Step 1 for this part of the journey is complete.

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