Autism Awareness

   What do you know about Autism? April is Autism Awareness Month. Probably not that significant unless you are one of the lives touched by Autism.
   We were recently interviewed about our journey parenting a child with a disability. One of the questions put to us was "What do you wish people knew about JR beyond his diagnosis?" I've done quite a bit of thinking about that. One of the things I wish is for people around us to know more about Aspergers. When you can recognize behavior as normal [for someone with Aspergers], it makes such a difference. It seems to me that it is our job then to educate people.
   Another thing I wish for people to know is how intelligent people with Aspergers are. It's easy to get distracted by the quirks and not see what lies beyond them. A classic absent-minded professor, if you will; lacking in social graces but really quite brilliant in their subjects of interest. Is it not true that the root word of Disability is Ability?

   It's been a number of years since I first found the writing "Welcome to Holland", but it's still the best description I've ever found.  

     WELCOME TO HOLLAND

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.
 
   In our case, it took 10 very long years of searching for answers before we arrived at a correct diagnosis. It's only in the last 1.5 years that we are free to enjoy "Holland". I look back at the last year and am infinitely grateful for the smoother sailing. If we had only understood sooner... 
   The irony is that while life would have been less frustrating if we had the key to unlock our son sooner, there are advantages. In our ignorance, we pushed him to change behaviors and achieve things that were very difficult for him. Our ultimate triumph to date is his upcoming high school graduation. We've got a bright future!