Tuesday, November 01, 2005

Let's Just Go Dutch

Recently, over at Darn Tootin, I put my two cents in on a discussion about the well-known "Holland" passage.

(Well. I should clarify. Well-known to me. And maybe a bunch of parents who have special needs children. And some other folks too. But not well known to Jete. If you asked him about the "Holland" passage, he'd probably think it was like the Panama canal or something.)

For Jete and any of you others who live under a rock, "Welcome to Holland" is an essay written by Emily Perl Kingsley explaining what it's like to have a child with a disability. If you've never read it, you can read it here. Even if you have read it, go read it again, just as a refresher. Go on. I'll wait.


All set? Ok. Moving on...

Shortened, the discussion at DT was about the opinions and advice of outsiders and how people react to a parents' choice of words regarding their child. Namely, calling them "special" versus calling them "broken". Several of the comments got down to "anti-Holland" sentiment. I perceived some people as saying that "Holland" is a steaming pile of crap and anyone who believes in that sort of thing is a big, dumb stupid-head.

Or something less juvenile. (Cut me some slack. It's late and I'm still on a sugar high from trick-or-treating yesterday.)

This discussion hit me at a particularly bad time. I've been feeling unsure of my parenting skills lately, and I've been beating myself up for not doing Enough for Ethan. Whatever Enough is. While my gut tells me we're doing everything we can for him, I still have doubts. I think, "Someone else would do a better job at this." Whether or not it's true, it makes me extra sensitive to people judging me from the outside.

With my own doubts compounding, I got a bit defensive and put a comment out there, which, I'm sure, immediately alienated me from the cooler, better writers who read this site. Basically, I wanted to know where all the Holland hatin' was coming from. I was starting to feel like I was SUPPOSED to hate the passage, and just by finding something good in it, I became a Bad Parent. One of those parents who uses the TV to babysit their kids, and feeds them Chef Boyardee for dinner, and lets their daughter wear mini skirts in the third grade. Who doesn't fight to fix their kid's problems, but instead gives up and uses labels to patch what ails them. A parent who just doesn't give a damn. I wanted to point out that there some parents who can appreciate "Holland" and still fight for our children.

In return, a new friend commented on my site and pointed me to this article to explain why she doesn't like the Holland essay. My first thought was, "Wow. That Cornfield lady is a much better writer than I am." And I could totally relate to her opinions. It's an excellent article, and she defends her position well. It didn't change my opinion, but I could see where she was coming from.

My second thought was, "Wow. That Cornfield lady is a hell of a lot deeper than I am."

See, I'm no dummy. I'm pretty smart. Got a 5 on the AP Calculus test. But when it came to my literature courses, I did slightly less well. I never really excelled at that whole "ripping literature to shreds" bit. The part where you take a 3 line poem and write a 10 page paper analyzing every. detail. inside the author's mind at the time they wrote it. I was the girl who wanted to say, "That was a really good poem. I think it's about a bird, and how a bird can represent hope. The end."

My experiences with "Holland" were just about that deep. I read it for the first time and thought, "Huh. That's a pretty good analogy. I like that." (I'm guessing analogy is the wrong word. My resident English expert - E? What's the right word? Metaphor?) That was it. End of analysis.

From the Cornfield article and the comments at DT, I'm guessing a lot of parents had completely different reactions when they read it. It sounds like it is partly tainted by the delivery. Passed out by people with no experience in the matter who thought, "Look! Have some sunshine you depressed parents! Now cheer up!" I can see how that would irritate someone.

I honestly can't remember where I first read it. Maybe on someone's website, or maybe I caught it in a magazine. Or maybe an acquaintance, whose special needs brother recently passed away, gave me a copy. All I know is that it wasn't thrust on me in the midst of my grief to try to make me smile and suck it up.

Also, I thought of the audience when reading this. The essay is meant to be directed toward people who are NOT parents of special needs children. To give outsiders a small glimpse of what the inital few days/weeks/months do to a parent. To explain that we are not just dealing with the worries and fears for our child, but with the loss of everything we thought parenting would be like. Everything we had imagined for ourselves and our child; their birth, their homecoming, first smiles, first steps. It's a readjusting of expectations.

Obviously, this essay doesn't apply to all parents with children who have special needs. It isn't meant to be a One-Size-Fits-All t-shirt. But it also doesn't only apply to those who have severe needs, like Ethan. I would imagine the parent whose child has "only" a hearing impairment, or "only" a learning disability must go through a similar process of grief and adjustment.

I didn't write the essay, so I don't take it personally if you hate it. I just take it personally if you say I am an idiot for liking it. And I don't like it because I stroll through the tulips every day with a stupid grin plastered on my face. I don't want to come across as if I'm happy with Ethan's situation. Lord knows I'm not. I'm bitter as hell. I hate everything about this. I'm angry a lot of the time. But I've redirected my anger. I'm not angry at Ms. Kingsley, or doctors, or well-meaning but ignorant family members. I'm angry at the unknown, the "why" for which we'll never have answers. Mostly, I'm just sad. And I think quotes like this convey that pretty well:

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

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

And I think it's very true - if I wasted all of my energy being Angry, I'd be losing energy that could be spent enjoying Ethan. If I spent all my time Sad that he will never walk or talk, I'd miss out on his beautiful smiles and joyous laughter.

But I know I'm unique. I'm very lucky, as I've mentioned before. I have a wonderful partner, awesome friends, and a terrific extended family who help us out whenever they can. There are single parents out there whose children have far less needs that have a rougher time of it than I am. So I'm sure they'd have a lot to say to me about appreciating life in the face of so much adversity.

The thing is, I never read too deeply into the "Holland" essay. I didn't expect it to be the Ultimate Guide to Special Needs Parenting. It was a short, simple, metaphor. Obviously, there are flaws to the metaphor. You can't simplify something so complex, so painful, so monumental, in a few short sentences. But I think it was a good effort, and I got her point. I could relate. And really, isn't that what writing is all about? Relating to your audience?

My point is, I liked the Holland piece because of it's simplicity. It made sense to me. Because, even though I've rambled on for three dozen paragraphs, I like a clear and simple message.

Honest. I do.


Gwensarah said...

I only made it through the AP math programs kicking, sceaming and with the help of one of those spooky math genius people. Your math stories (like that test you took) leave me filled with awe since I loathe math. Calculators are my pals. I secretly suspect that my math loving kid might be a changeling. Like I said earlier, I felt like an Asshole (cue Dennis Leary song) after reading some of your linked journal but you're right about something you said, the fear of being a Bad Parent. I feel it everyday. My son doesn't have a mommy AND a daddy, he doesn't think it's a big deal and I honestly don't buy into the stereotype of the 'poor fatherless urchin' but sometimes in the wee hours of the night I think, "what if it messes him up?" What if our current struggles make some sort of dent on him. Hell, is letting him have mac and cheese two nights wrong. Does living in a town where he's the only single parent child in the entire first grade without the siblings he so desperately wants make him look at his life and think, "wow, I got screwed." Personally I think you're the last thing from a bad parent. I applauded your decision to not send Ethan to school rather than ignore your instinct. It's so obvious that you love both of your children for their own unique qualities and I find your honesty regarding the ghosts of the Ethan that might have been to be some of the best writings I've read. It's interesting though, I wonder if it were me. If it were my son. How would I deal? Would I resent every child that reached the milestones mine couldn't. I might. When it comes to Rymer I'm horribly selfish, I get pissy when I see those type of kids who pushed Schuyler with their perfect houses, in their perfect towns with two parents and the requisite SUV where mom can have as many kids as she wants. Why? Because Rymer's a thousand times the kid they are and while he's not living in a cardboard box, we don't have options right now either. He should have the world and I'm sure you feel the same way about your boys. So would I be bitter and angry? Most likely, it's a shameful weakness but I own up to it. The line between Italy and Holland is a very thin one, people don't seem to get that. A car accident, an illness, a near drowning can change the landscape in one nightmarish instant so I'm trying not to judge those in either 'country' but hope that maybe a bridge of understanding can be built between them.
Or something heh.
You calling me friend was cool because you're someone that I'd love to have as a friend. We geeks have to stick together.

sete said...

Didn't I give you that Holland thing? I am almost certain I did. Either way I have read that before. I got it in my "Children with Special Needs" course. I know....this comment is really irrelevant to the blog entry. Sorry. Anyway, you know I support what you say! You're the smartest girl I know :)

Day said...

I quite like the Holland essay...I thought it was meant to help, meant to bring hope, kind of like, "it's not okay, but it is."
If that makes me a Pollyanna stupid-head, so be it.
I've never understood why all things intellectual have to be so negative.

I like your site, by the way.

Mel said...

I am not a parent so I can not totally relate to what a parent goes thru when they learn thier child will never be normal. However I have 2 nephews with special needs. B is 11 and has CP, his older brother C is 14 and severly autistic. Immedialy upon getting thier respective diagnosis we knew the boys would never be normal. Trying to explain that to friends and family is difficult to say the very least. An article like Holland no matter how simple the language, breaks down what a parent or primary care giver of a special needs child has to accept. That being the loss of the dreams you had for this child and putd into language that anyone can understand. Though for some Holland might not go deep enough into the pain, the raw emotion, followed by detailed accounts of Doctors and tests and meds and the uncoditional love you have for this child I personally think it is a good start.

Gwensarah said...

I just saw your comment and I think you may have a very good point. Now that he's older, listens to music with the same passion I do and we can talk about stuff..it's a completely different phase than we were in back when he was 3 (when the longing and bitterness were nauseatingly bad) I don't think I'm closed off, just realistic about my odds. The only thing I'm somewhat mourning now is the loss of any hope of having another child. In some ways it feels like a death.

trisha said...

I love you!

Yeah, it's late, er, um, early in the morning and my son is awake, so therefore, I am, too. I wish I had a deep comment, but I don't. I really enjoyed this post. You are a good write.

Rob said...

I quite like the Holland essay...I thought it was meant to help, meant to bring hope, kind of like, "it's not okay, but it is."
If that makes me a Pollyanna stupid-head, so be it.
I've never understood why all things intellectual have to be so negative.

My distaste for the Holland essay has nothing to do with being an intelectual snob; as a parent of a special child, I find that accusation offensive. My objection has everything to do with whether or not "acceptance" is appropriate for every child. It's not, and for a kid whose future is uncertain and who may have options that have yet to be discovered, accepting their disability can be tantamount to giving up the fight.

Acceptance isn't always hope. Sometimes it's resignation. Ask someone who knows before you start equating disagreement with intellectual negativity.

Mete said...

Rob, I just want to clarify - this post wasn't a personal attack towards you or your beliefs. It was related to the discussion I had seen on your site, and the article gwensarah had forwarded me. I was naive to the fact that so many people hated this essay. I love a good debate, and hearing both sides of the story. I just wanted to put mine out there.

I still say the Holland essay is about accepting the PARENTS' new roles, not the child's problems. About dealing with a crappy situation, and trying to make the best of it.

You can all disagree. I give you permission. :)

We all have different approaches, but none of you are my enemies. It's the special needs - whatever they are - that we should be fighting against, not each other.

Rob said...

Iknow, Mete. I was specifically responding to the Pollyannna stupid-head.

Anonymous said...

Having grown up without special treatment to go with my 'special needs', I read Holland as the land that my parents never knew they lived in but did the best they could to navigate without a map. I can see how it's easier to apply the Netherlands to children who are in a sense in a nether region between "normal" and obviously "broken"; for those who are very, very different, it doesn't seem quite so apropos.