Wednesday, May 23, 2012

Welcome to Holland


WELCOME TO HOLLAND

by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
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 the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very 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.

Have you ever in your life been forced against your will to attend a continuing education class? You know the ones where you go and keep looking at your clock thinking "  I have so much more better things to be doing with my time than this ." The first time I heard this poem I was in said class. I was just out of high school and working at a day care center while attending dental school. As our daycare had a special needs child , we were forced to attend a special education class. I thought , "why do i have to take this class on my Friday night? " The kid isn't even  in my room and I don't plan on having any special needs kids. Here is where God's sense of humor came in as I myself am a mother to a very special little guy. This class wasn't boring to me , I remember to this day this poem and thought what a wonderful way to put it . Reading it now as a mother of a special needs kid I think of how amazingly accurate it is. I felt almost entitled to have have this perfectly amazingly "normal " child. I mean I'm a good girl , never got into any trouble as a kid , I mean execpt the one night of wine coolers which my parents still won't let me live it down. :) . I finished high school at the top of my class , chose a career , fell in love with a amazing man , got married , bought a house and now since I did all these things and in  societies perfect order I am ready to receive my prize. We tried for a baby for to me what seemed like a eternity . Everyone kept saying, "God is making the perfect baby for you ". I finally got pregnant and I read all the books , changed my diet , exercised , read all the books and it was finally my turn!  Ethan was special from the day he was born . This little monster came into this world a week late at 10.2lbs . He was a nursery celebrity. Everyone had to come see this humongous baby. To me and Tommy he was simply our little guy but it was hard to argue that he did look huge next to the 6 pounder next to us.  But he was gorgeous in every way . We would attract so much attention everywhere we went , waitresses would even uncomfortably oogle over him for ever , But i didn't care as he was mine! He met all of his milestones even if it was the last day it was considered in normal range . But something to me didn't seem right , he didn't make eye contact even as a baby , he would throw a full on meltdown if we would change the routine or go somewhere new.  He became a very particular child. But as we were new parents and had no other child to compare we thought "He'll grow out of it".  We took Ethan to his 18month well check and voiced our concerns that he wasn't yet talking even a little . They did a questionnaire on him and found out that he had a lot of red flags for autism.  When i heard the word Autism my heart melted as I remembered working with a girl who had a autistic son and seeing his behavior and at that point I took the doctors suggestion and left it at the door. Ethan's not autistic . How could this doctor tell anyway. Ethan is 18months old a little young if you ask me. Even though I saw all the signs and knew in my heart it was true I didn't want to believe it . I mean this kind of thing doesn't happen to me . I am not the right mom for this and no I don't want to . God made a perfect baby for me and I am not perfect for that role so no no no no and no , not happenning.  Once we accepted it and came to terms with it I decided to move to autism island. How if the statistics say that 1 in 88 kids will be diagnosed with autism  do I feel like the only mother on the planet with a child with autism.  I have worked really hard my whole life to fit in with the crowd and not stand out but another one of God's humors, Ethan stands out wherever we go. Its hard not to notice a 5 year old boy that looks like a 7 year old riding in a grocery cart making all kinds of interesting sounds while his 2 year old sister is walking the whole time next to the cart . Or how we can't just go to any restaraunt to eat , it has to have a GFCF menu or we have to bring a special meal for him, or if we go anywhere new we have to have backyardigans available to watch so he can retreat on his own.  Autism Island is a place for all of the autistic children to go where its okay to be loud , and has all pefect menu's at all the restaraunts and is full of trampoline's and pools and swings and all sensory things. Where all the parents can sympothize with you as they too go through it and can give you actual advice on potty training, food, temper tantrums because they know what works for these kids. Yes this is where i want to live . I am not all about inclusion , I saw what some of the so called cool kids from my highs chool did to a special needs kid and as difficult as it is to say I laughed about it. Now putting my own self into that mom's shoes and how she must have felt my heart breaks. So I am happy to live in Holland its all the Italian visitors who can make it tough. Cause for me its okay if Ethan doesn't make eye contact as Grandpa wouldn't have it any other way and its okay if he  wants to dance on stage at church to praise God, and its okay if he doesn't get potty trained til he's six not three and its okay if he gets loud when he's excited because I will take whatever smile I can get out of him and cherish it forever.

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