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Tuesday, December 02, 2008

I wanted to post Brendan's comments to my autism post....he tempers my frustration on my rough days so well. He reminded me this article a good friend gave us when Luke was first diagnosed.

WELCOME TO HOLLAND By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.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."But there's been a change in the flight plan. They've landed in Holland and there you must stay.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.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.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.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 for some, the pain of that will never go away... because the loss of that dream is a significant loss.But... 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.

Here are Brendan's comments:
Let me put it another way.Let's say you were planning a trip to Italy. What would you do? You would get a map of the county and read about the history and chart a course for the interesting things to see and do. You may pick up few Italian words or phrases to help yourself get around. You would find the best (safest) way to change US$ to the local currency. You would spend every day looking forward to your trip, excited to see new things and meet new people and enjoy new experiences.Finally, the day has come. You get on the plane fully expecting to arrive in Italy. Only, you didn't. You landed in Amsterdam. What do you know about Amsterdam...nothing. Where do you go next? You don't know because you can't read the street signs and you don't know the language. You have no idea what the local currency rate is, nor where the nearest bank is. You're scared. You wonder "How am I going to get back home?".You immediately jump into survival mode. Find a place to stay and get some food (find the best place in the country to get services for your child and the resources/therapy he needs). Next, mostly through trial and error, you try a few things and venture farther away from your hotel, while being reasonbly safe. (You let your child go to a friend's house for a play date) If that goes well, maybe you let him do it again. If not, then you know you can't go down that street until you know more about it. Then there is the restaurant next to the hotel. The food is delicious, but makes you sick. However, the more and more you eat there, the more and more you want to keep eating there. It's not gluttany though. Turns out, there is something in the food that acts like an opiate on the brain. This is not a simple food allergy. (Try to eliminate all foods with any trace of wheat and/or dairy on a single income. A loaf of rice bread is about $6, which is 1/2 the size of a normal loaf. Soy milk is effectivly over $5 per gallon).However, every once in a while, God reveals to me how beautiful and unique Amsterdam really is. It's not that it's only beautiful once in a while, it's beautiful all the time, I just don't see it cause I'm too focused on the fact it's not Italy.Our son Luke is a beautiful child who is fearfully and wonderfly made. He's bright, funny, a major schedule junkie (needs to know the next two or three events that are going to happen next). He is incredibly sensitive. He's our Amsterdam. We learn more and more about him everyday. Sometimes we're missing several peices to the puzzle, sometimes the picture is real clear.Sorry (again) about the apparent rant. Lesli does a phenomenal job. I can only imagine that she gets her energy from the One who created it all! I pray that the Lord would continue to encourage and uplift her and give her the strength to press on.

Thanks for all the kind notes and comments from all who are lifting us up on this journey.

2 comments:

Karen M. Richards said...

Darling Ones,

I really understand Lesli's well written rant and Brendan's reasoned and articulate response.

The day in day out grind of living with a person in Amsterdam, not Italy, has it's upsides and downsides. Many, if not most, people have never been to Amsterdam and can't possibly understand what it is like...and often don't have time or inclination to read up on it unless they know somebody who lives there. Sometimes, those folks will make uninformed statements about Amsterdam, not knowing it is a wonderful place, just different from Italy...and more expensive. I don't believe they are being mean or biased.

I'll bet they do know somebody in their lives, who have accidentally gone to Russia, the North Pole, Denmark or Burma...with Strokes, Alzheimer's, Multiple Schlerosis, Mental Illness, or found themselves suddenly diverted to Patagonia, with no warning, and no recourse as their fellow beloved allergic passenger unexpectedly died on the plane because of a careless flight attendent who gave him peanuts...an accident that should never have happened.

This is not to minimize the Depth of Sorrow for folks & families suffering from Autism.....it is a shout out to all God's creatures struggling to understand and cope with the Missed Connections, Re-routes, and Other Disasters of Flying The Friendly Family Skies.

Sometimes it isn't the Flight/Itinerary we signed up for, but there are many many many passengers who have landed there, or never landed at all. Sometimes, Amsterdam is the better option over
Zimbabwe or Bangkok or Zanzibar. Sometimes they SOUND like better locations. They aren't.

Very very few of us delightfully and unexpectedly end up in Paris. Many of us have booked wonderful 'safe' fancy hotels, only to be killed at the hands of nut jobs.

Most of us have unexpected Itineraries somewhere in our Circles of Life. Life without Refunds or Do-Overs. These are our Journeys of Discovery with all their sadness, joys, sidetrips, flat tires and dead batteries.

Compassion for each other, even when we don't understand the Language of Amsterdam, et al, is the only way I know, that God gave us to Cope with His Mysterious Planetary Atlas.

Love from a Fellow Travelor,
Nana With The Red Hair

The Ties that Bind Us said...

I enjoyed this post! Join us at http://ourlifestyleoflearning.ning.com/ to discuss homeschool topics.
Brenda@thetiethatbindsus.blogspot.com