Thursday, April 28, 2011

Welcome to Holland. Or is it Beirut?

Lots of families look for a way to describe and understand their feelings after they receive a diagnosis and learn that they will be raising a child with autism. Thankfully, there are some essays out there that are widely shared and might help you sort out your thoughts and recognize that you are not alone in this path. “Welcome to Holland,” is very well-known in the autism community as an expression of coping with a special needs diagnosis. A more recent essay, “Welcome to Beirut,” gives an entirely different perspective on being a parent to a child with autism. I will attempt to paraphrase each of them and then also share a couple of new ones I found.
Let’s start with the most popular, “Welcome to Holland.” It was intended to discuss the experience of raising a child with Down syndrome. In recent years it has become associated with autism. To view the original essay in its entirety, click here. This is my attempt at an overview:
You have been planning a dream vacation to Italy. In preparation for your trip you have purchased guide books, you have been learning the language, and you have dreamt of all the fascinating places you will visit while you are there. The day arrives and you get on the plane. When you arrive at your destination the flight attendant says, “Welcome to Holland.” You are confused and upset. You will not be going to Italy after all. So, you get some new guide books and do the best that you can. Although it is not what you had hoped for, you also find there are many wonderful things about Holland.     
Honestly, I think it’s beautiful. It’s very simple and nice. But autism is not always nice. It can be very ugly. A majority of autism parents I know (including myself) refer to themselves as warriors at some point or another. It’s a fitting term for what we have to do to help our children. Thus, a new essay was written called, “Welcome to Beirut.” It talks about the ugly that isn’t always visible to others. For the full version of the essay, click here. Here is my short take on it:
Starting with the diagnosis of autism, it feels like someone has thrown a bag over your head and kidnapped you, taking you to the middle of war zone. You are terrified and have no idea what will happen to you. You find yourself in Beirut, a place you’ve never been. You are unable to speak the language and don’t know what to do next. As you exist in your new world you find yourself coping, but then suddenly things can change and you could easily be wounded from a stray bullet. There are always quiet moments in war when things feel somewhat peaceful, and you make the best of those times because you know the war could flare back up at any moment.
I think this version is accurate to what many people feel as they try to navigate the world of autism. Getting the proper medical, therapeutic, and educational interventions can be a constant, exhausting battle. If you feel somewhere in-between a battle field and the land of tulips, then you might appreciate “Holland Schmolland.” You can read it here. This is my version:
Schmolland is a place that is a bit different. In Schmolland it is customary to do things like: line up your toys, repeat lines from a video, or bounce endlessly on the couch. The citizens of Schmolland struggle to mimic the customs of people from other countries and many cultural misunderstandings occur. One thing is certain - the population of Schmolland continues to grow.
This one demonstrates that autism families and children are truly different and I like that it makes a cultural distinction. Despite the very hard work our kids do to fit in elsewhere, they ultimately find comfort living in a land where it’s okay to have their own customs. If you want to take the idea of Schmolland a step further, then you will arrive in the subarctic region of Canada. “Welcome to Yellowknife” is a very interesting read and you can view it here. This is my synopsis:
Your family lives in San Francisco and finds themselves suddenly relocating to the cold, subarctic climate of Yellowknife. To survive, you have to be prepared. It’s isolated, challenging, and very expensive to live there. Yellowknife is a land full of strong people and those who arrive may not always stay or wish to be there. Yellowknife families might try to move closer to the US to be more comfortable, but it’s still obvious they are different. Some families are able to move back to California in time, but they might not ever live in San Francisco again. For those who stay in Yellowknife, they learn how to live there and enjoy it, despite the hardships.     
Each of these views on living with an autism diagnosis is great in its own way. I enjoy seeing the different perspectives and truly have a level of understanding with each of them. Which one is your favorite?

April is Autism Awareness Month! A group of mommy bloggers have joined together to help spread the word about autism. Please visit these wonderful blogs!
Join us, won’t you?
  

21 comments:

Lexi said...

I love it! I wrote a post forever ago about changing the story to "welcome to Walmart". Welcome to Holland works for Down syndrome (I have a baby with Down syndrome) but not for autism. Autism is much harder. And a lot like fricking walmart.

Yvonne Liu said...


This comes closer to describing my experience with prematurity and autism:

http://www.narof.org/docs/atlantic.htm

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