Friday, June 12, 2009

The Essay: Part One

Most parents of a special needs child are aware of Emily Perl Kingsley's 1987 essay titled "Welcome to Holland". They've often had it emailed to them from caring friends at least once. There has been at least one book written about it, Road Map to Holland by Jennifer Graf Groneberg, one song written about (if you count mine), and a few very funny parodies of it. Chapters have been written about it in books, including Schuyler's Monster by Rob Rummel-Hudson and my own. The reaction to it is hardly consistent. Yet, it continues to be an important right of passage to the newly minted special needs parent. If you've never heard of it or read, I recommend you do so (click here).

Why has this "Holland Thing" received so much attention?

The only explanation I can give is that it resonates with people. I know it did for me - or at least most of it did. It was the first thing I came across that gave legitimacy to any negative thoughts I may have had about the learning I was the parent of an autistic child. I found the bombardment of "hope" and "healing" messages at the outset of receiving Robbie's diagnosis to be preposterous. I was interested in neither at the time. Well intended comments like "at least he's not.....(some awful thing far worse than PDD-NOS)" or "you think you got it bad, I know a person who's kid is....(some other awful thing far worse than PDD-NOS)". What I needed was the acknowledgment (primarily by me) that I had experienced a loss and, more importantly, I needed to grieve that loss.

What parts connected with you the most?

There are two parts of the essay that connect with me the most: "The Bait and Switch" aspect and "The Loss".

"The Bait and Switch"

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

The whole basis for the essay is the analogy of taking a trip to Italy representing the birth a child. In the analogy, the author learns that her plane has landed in Holland instead of Italy and there's nothing she can do about it. The dreams of her long anticipated trip Italy are dead. She's not going there. It's "Welcome to Holland" instead.

What I love about this analogy is the clear description of the disorientation caused by the experience. Most of us could imagine how we'd feel if we'd taken a long flight only to land somewhere other than our intended destination. The reaction would be that of utter disbelief. Our "trip" has been hijacked. We've been wronged. We've been violated. We're angry. We want retribution. But the hijackers got away. We don't even know who they were. There's nothing left but helpless and frustration.

She could have taken the analogy further and had the airline have you deplane in the middle of nowhere without a map as the plane flew away to its next destination but I'm sort of getting ahead of myself.

"The Loss"

"...the pain...will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss."

Before reading the essay, I understood this part of the experience, the "very significant loss", the least. I knew I was miserable and devastated by the diagnosis. I knew our lives had changed fundamentally (or at least our perceptions about our lives had changed fundamentally ). But I never realized that I was, in fact, grieving a loss. It was hard to see it as a loss when my son was there the whole time. He didn't die. He didn't even change. He was merely diagnosed. Yet, it altered everything. Putting the experience into the context of a loss helped explained the denial. I was in the first (and very long) stage of grief. Knowing this helped me move onto the next stage - unaware that it was going to be a repeating cycle of grief.

The idea that the pain "will never, ever, ever, ever go away" ran counter to all of the hope-filled, inspiring stories I'd become accustomed to hearing. I found this to be a very bold statement; one many of us needed to hear. Sometimes it needs to be said: This Sucks. It doesn't mean our children suck or we suck as parents or even that it sucks to be their parents. It does mean that this experience challenges us well beyond what we think we can handle. It does mean that we sometimes want to grab some around us by the collar and scream, "You have no idea what this is like!"

What parts didn't connect with you?

I'll save that for Part Two.

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