lampie

not_hothead_yet


life with talking trees

"I do not intend to tiptoe through life only to arrive safely at death."


Previous Entry Share Next Entry
"Its Not Holland" -by my uber-awesome friend Rhy
blue hair is my normal
not_hothead_yet
Why having a child with a disability is not like being sent to Holland.

This parable bothers me. It bothers me a lot. While it is certainly uplifting, it makes me uncomfortable, because it denies a central and in my mind, undeniable fact about the experiences parents of children with life altering difficulties face: It is much harder and more difficult to parent a child with a disability than it is to parent a neurotypical child with no health challenges.

In my mind, a more accurate analogy would be this:

Imagine planning a trip to Paris for you and your partner. You get your guidebooks, your luggage, your wardrobe and your plane tickets. You research everything about Paris so you'll be ready when you arrive. You make make reservations. You talk with friends and family about their wonderful trips to Paris and how much fun they had. The two of you talk everyday about how much you want to go to Paris and how amazing it's going to be when you get there.

You get on the plane and take off. Suddenly, without explanation, the plane is diverted. Then at 5000 ft you and your partner are yanked out of your seats, strapped into parachutes you only vaguely understand, and tossed out the door.

Some how you manage to make it to the ground.

At first, you just sit, clinging to one another, checking to see if you have any broken bones. Once you're done thanking god that you're still alive, you dust yourselves off and look at the terrain. You look at each other and reassure one another that you're going to get out of this place.

Your first few days in the desert are exhausting. Just getting your basic needs met feels overwhelming. You feel alone, terrified and honestly- You're not sure if you're going to make it. Sometimes you fight, not because either of you is doing anything wrong- but because you're both tired and frustrated, there is sand everywhere, not enough water and there is no one else to yell at.

After many days of struggle, you finally make it to a village. The first thing you find out when you arrive, is that this settlement is made up of people who also got dumped out of a plane. This is what they tell you:

We are on the moon!
No, this is Arizona.
No, we're in the Australian Outback!
It's the airlines fault.
No. It's the flight attendant who pushed us out.
Oh! Another passenger pushed me out. How did that crazy person get past TSA?
There is no hope of rescue.

Wait! There is a rescue effort underway.

There is an 80% chance you and your treasured partner are going to crumble under the strain of this experience.

No, you won't, this experience will make you stronger!

The desert is a gift!

No, it's not. It's a war and war is hell!

Trying to make sense of this, you look around and say, "How did this happen? What made our plane go off track, when all the other planes made it to their destination just fine? If only we'd flown on a different airline. Who is right? Are we going to end up divorced or not? Is there a rescue party coming? Why are all of you talking at once?

Everyone in the crowd starts to shout LOUDER. Their voices jumbling into a unintelligible cacophony . Then, it dawns on you that maybe there are no right answers, because no one really knows. This is more terrifying than any answer you could have heard.

So despite being overwhelmed, despite struggling for the basic necessities and despite not knowing how you got there, you get on with the business of living your life. It's hard. It makes you angry, not at anyone in particular, just angry because it wasn't supposed to be this way. There are moments when the absurdity of it all makes you laugh. You and your partner discover that there are gorgeous sunsets in the desert and here, the stars shine with crystalline clarity. You smile a little more often and you realize that going to get water every day is doable once you know where the water hole is. You're scared sometimes, yes, but not as often as when you first landed. There are days when you wake up and wonder how you are ever going to make it through. At times, you're lonely for all the friends you had who went to Paris. Sometimes you don't recognize this person you're becoming or the person your partner has transformed into.

The desert is your new normal and once it becomes familiar, it's more understandable. You know which plants are poisonous, how to get sand out of your sleeping bag and how to be patient when your partner is screaming "ALL I EVER WANTED WAS A CROISSANT!" The path to the water hole is well worn. You learn how to handle your own meltdowns and you figure out that there are some wonderful people here in the village. Your skin gets toughened by the sun, and you realize you don't need Starbucks to get through the day.

Sometimes at the end of the day, as you gaze up at the endless sky, you wonder, "What would Paris have been like?" But then you realize that the desert has become your home- and you wouldn't give it up for the world.

Rhyannon Morrigan(c)2011

I've always hated that Holland analogy too.

Well done. (mental hugs)

I love this; so much better than that damn "Holland" essay.
**hugs**

Wow, that was really good. The "Holland" poem was written by a mom whose child had down syndrome and is otherwise very healthy. He is pretty high functioning from what I can tell too. I can see why she had/has that perspective. But, that's where my disconnect with "Holland" comes in too. We have two daughters with down syndrome and for the younger one I think it really has been a "Holland" experience for the most part. She is still young but so far parenting her has been fairly "normal", she is high functioning and we have high hopes for her future and her abilities.

Our older daughter, though, is a completely different story. In addition to down syndrome she has a host of other issues including autism and extreme food refusal (as in, you have to feed her via tube or she will very willingly starve to death). It is hard to be her parents and we worry often about what the future will be like for her. It really does feel like a desert. It is not a beautiful thing and if we could get rid of these things, we would in a heartbeat. Just going to "Holland" with our older daughter would be a dream come true. At the moment we are just thrilled with the rare times we come across a water hole to rest at as we continue to journey through the desert.

~Rachel
http://browneyedblessings.blogspot.com

thank you sister of the special needs :)

Holland was good to hear when I was carrying a baby with Down Syndrome. It wss peaceful and it calmed my nerves. Holland still needs to be the first thing a parent sees when getting that news.

That being said.

Then there was Autism.

The moon is good for Autism.

Let the parents go to Holland first. Give them a little time with their babies. Let them have a breath.


Well said, Eileen, for Autism, Down Syndrome, Congenital Heart Disease and so much more!

Another good analogy/allegory. Nicely done.

Perfection. "ALL I WANTED WAS A CROISSANT!"

thank you

(Anonymous)
its all true x

I still need a Starbucks to get through my day :/

It's NOT Holland....

(Anonymous)
I have to say that I always loved "Welcome to Holland." I thought it described the situation pretty well. This is better. More realistic. Really gets to the core of what our lives are like.

YES YES YES. Thank you for this. I have wanted to shove Holland up so many people's arses

Don't hate me but the longer you spend dwelling on the shitty hand you or your child gets dealt the more chance you have of missing out on the good parts/days/moments that this life has. I don't spend my days dwelling on the shitty hand I got dealt- I get on with it the shitty days get enough attention when they roll around. They don't need anymore.

that's the whole point of the piece: its confusing, its scary, its upsetting but over time you find your way. "find your way" doesn't mean you dwell at all; it means you moveon and adapt. That doesn't mean you sit around with a grin plastered on your face pretending like everything is so wonderful, it means you set your jaw, get on with life as best you can.

If you think this piece is about "dwelling on the shitty hand you are dealt" then you totally missed the point.

Holland, the desert and Oz

(Anonymous)
first stop holland final destination OZ!!!!! everyones heard the story of our trip to holland, but not many people have heard the rest of the story.................... as soon as we fueled up we were off! next destination OZ!!!! now oz is scary, much scarier than holland. after all oz has flying monkeys, green witches, lions!, tigers!, and bears! oh my!!, but oz has good witches, munchkins, and a yellow brick road, now that road is long and parts of it are really dangerous, but dont be scared because on that road u will meet the best of friends, cowardly lions , who turn out to be the bravest of all!! brainless scarecrows who will amaze u with their insight!! and the tin man who will show u no matter how hard things get, no matter how dark things seem , you can get through anything with the power of love behind u , all u need is a heart!! you will be amazed at all the new friends and new family you will discover on this wonderous road.......... no one
really knows where the yellow brick road ends, it has so many sidestops and so many destinations, each stop is different for each of us.... all you have to do is grab the ones u love and march arm in arm....we're off to see the wizard...................... holland is just a minor stop when ur flying OZ AIRWAYS!


your story made me cringe, it made me sad, and it made me laugh, exactly what having a child with down syndrome is like, i hope you like my holland anology, victoriasdad

?

Log in

No account? Create an account