Sunday, June 28, 2009

The Essay: Part Two

While the "The Bait and Switch" and "Loss" aspects of Emily Perl Kingsley's essay "Welcome to Holland" resonated with me, there is a third aspect with which I struggled.

"The Very Lovely Things About Holland"

In the following lines, a reader is left with the impression that the author has learned to accept that she is in Holland and is glad to be there:

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

To be honest, I didn't pay much attention to these lines at first. The other parts of the essay resonated so strongly with me that I never contemplated how I felt about being in Holland. I was simply glad to begin understanding what I was going through. As I began researching my memoir, I came across other comments about "Holland" and was surprised by the different perspectives. Some stated flatly that they didn't want to be there.

Is there a choice? I had never considered looking at it this way. Late last year, I had a song about Holland rattling around my head. The line that first formed was "and of all of the places that I'd rather be, I guess that it's Holland for me". On the Saturday after Thanksgiving, I sat down and wrote and recorded the second - one day (it took me a week to finish my post about it on MySpace).

I blogged about this in my only blog post on MySpace:

Parents have mixed reactions to "Welcome to Holland". For some, like me, it resonates with our own experiences. I had it sent to me at a time when I needed to hear it most. Others don't want to be in Holland and I'm not sure I blame them.

The hardest line in the song to complete was the last line. I couldn't decide whether to use "I guess that it's Holland for me" or "I'm glad that it's Holland for me" (I recorded it both ways). It's a tough call that I think goes to the heart of the reaction to the essay. To decide, I asked myself three questions:

a) Would I rather not be in this situation? Probably.
b) Do I wish that the situation was easier on everybody, especially my son? Definitely.
c) Would I change my son to accomplish a) or b)? Not a chance.

I'm crazy about my son. He's perfect in every way. This isn't something he just has; it's something that he is. It's a part of him. I can't imagine him being any different, nor would I want him to be. I'm glad just the way he is. We'll have to make the situation easier through other means.

Therefore, "glad" won.

Would I change my son? That's the ultimate question. He is who he is. I love him for whom he is, not for the expectations I unknowingly had about him before receiving the diagnosis.

But despite any appearance of magnanimity, being "glad" is not an easy call. Even after the caveats above, it's still a 51/49 decision. There are many times I'm not glad to be in Holland. Sometimes I hate it. There are times that it flat out sucks. There are times I feel like I've landed in Somalia not Holland but that's for the final post of the trilogy.

Sunday, June 21, 2009

Happy Father's Day.

Happy Father's Day to all fathers out there.

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.

Thursday, June 11, 2009

The Movies: A Great Alternative.

We have yet to take advantage of this but this is a great idea by the Autism Society of America.
(oops - we means "I" - Joy and the kids did take advantage of it and it went well)

Don't Miss the Next Sensory Friendly Film!: Up

June 13, 2009

AMC Entertainment (AMC) and ASA have teamed up to bring families affected by autism and other disabilities a special opportunity to enjoy their favorite films in a safe and accepting environment on a monthly basis with the "Sensory Friendly Films" program.

In order to provide a more accepting and comfortable setting for this unique audience, the movie auditoriums will have their lights brought up and the sound turned down, families will be able to bring in their own gluten-free, casein-free snacks, and no previews or advertisements will be shown before the movie. Additionally, audience members are welcome to get up and dance, walk, shout or sing - in other words, AMC’s “Silence is Golden®” policy will not be enforced unless the safety of the audience is questioned.

Thursday, June 4, 2009

The Last Days of School: Morale

Tomorrow is the last day of school for the kids. Kelly and Robbie are both pretty excited for summer. As someone who works from home, summer creates a bit more stress but Joy keeps both of them pretty busy and they understand how important it is not to bother me during the work day.

I'm very proud of both of them. Kelly ended the year on a high note by scoring excellent on her TAKS tests (statewide standardized tests). She was commended in math and was one question away from being commended in writing. I'll withhold my judgment about the disparity of her standardized test scores with her classroom scores. I'll just say that Joy did a great job preparing her.

Robbie had a roller coaster of a year but it ended very well. I couldn't be happier for him or with him.

Today, each of the grades had a party at school. Robbie had been dreading his party for days. He'd been talking about it a lot, hoping to convince Joy to let him stay home. It was obviously a great source of anxiety for him. I'm not sure if he feared the noise or the emotions or just wanted an excuse to stay home from school. Nonetheless, Joy finally convinced him that if he went to school and then the party, but didn't like the party, he could come home. Daddy would be there if he wanted to come home.

Daddy was there.

How did it go?

Questions like this are usually considered rhetorical. It's like, "How are you?" Most times, people expect "fine" or "good" or some other brief, unimportant response. In Autism World, this is never a rhetorical question. Whether it's a trip to the occupational therapist, a trip to the mall or even a visit to a friend's house, this question demands a thorough answer. "Fine" isn't going to cut it.

So, how did it go?

I thought about this as I watched the first grade class enjoy its party. All of them were outside enjoying a series of games. It was like one big recess. I knew I would be asked how it went so I was already thinking about my answer before the party was over.

As a I thought about it, the concept of morale came into my mind. When someone asks, "How's morale?" what they're really asking is "How's everyone dealing with a situation that sucks?" Morale is usually spoken in the context of troops in a war or employees after layoffs or a company set back. Nobody asks, "How's the morale?" of a hockey team that just won the Stanley Cup. Asking about morale applies context to the question without actually describing it.

If I answer the question above without context the answer will be quite different than if I answered with context.

So, how did it go - without context?

I caught up with Robbie's class when they were already outside. Most of the kids were playing with jump ropes or four-square or just having fun with each other. Robbie stood off to the side by himself, in his own little world. He'd spin around and mutter to himself a bit. When it was time for the class to move on to the next area, his teacher had to pull him into the line because he didn't come on his own. He didn't play any of the games. After a while, he just sat down next to the teacher.

After a few "stations", each of the kids was given a freeze pop to cool off. Robbie wanted a red one. Unfortunately, the parent helping gave Robbie a lemon flavored one - not a red one. I don't know why she didn't give him a red one. They still had a few. He took one bite of the lemon flavored one, told her it was "yucky" and threw it away.

When his class arrived at the place where they could write with chalk, Robbie was excited. He grabbed a piece of chalk and wrote away. When he walked over to another area to continue his artistry, he tripped on a curb and skinned his leg pretty badly - blood and all. I whisked him down to the nurse's office, where he proclaimed, "That party is dangerous!"

After, a quick swab to clean the wound and two Band-Aids later, we went back to the party as it was ending. I followed him back into his classroom. He'd had enough. It was time to go home - 5 minutes before final bell.

So, how did it go - with context?

When I arrived at the party late, I was surprised to see Robbie with the class. I expected him to be angry with me for being late and want to leave immediately. But he didn't. He made it clear to both me and his teacher that he wanted to stay (though, I don't think he realized that this was the party - I think he was expecting something in the classroom). He was enjoying himself. When the teacher asked him to do something, like get in line to move to the next play areas, he did it. No fussing. No tantrums. Nice smooth transitions.

When he didn't get the red freeze pop, he was disappointed. But he didn't throw a fit, or yell or kick or scream. He told the woman he wanted a red one and she didn't give it to him. He was disappointed and expressed his disappointment. When I asked her a few minutes later if they still had a red one, she pulled one out of the ice chest and handed it to Robbie. Disaster averted. A few minutes later, a little girl walked up to him and said, "Look, Robbie. I've got a red one just like you!"

Although he was in real pain after his fall, he handled himself very well. After it happened, he walked up to me and said (with a wince) that he'd hurt himself and needed to go to the nurse's office. When I saw the size of the scrape and blood, I agreed. No one knew what had happened. They were surprised to see us go. He went to the nurse's office calmly. It was a far walk for a first grader with a limp. When we arrived, he didn't want her to clean the wound but didn't give her any trouble when she did. When I asked if he wanted to go home or back to the party, he chose the party. When we returned, his teacher and the special education specialist were astounded. Nobody (including me) expected him to return. I thought the day was done.

He left his class five minutes early; which was sixty-five minutes later than I expected.

So, how did it go - really?

It went great. Much better than I ever expected. Thanks for asking.