This week, Aaron and I took Tyler to the Marcus Autism Center for Autistic testing. Tyler has Down Syndrome. However, around the age of 3 or 4, we began to suspect he may also have autism. We questioned pediatricians and therapist. We were told time and time again that Down Syndrome and Autism were so similar. Finally, at a focus event, we talked to another family. Their son had a dual diagnosis. Armed with new tools, we talked to specialist at the autism center. This week’s testing has been a long time coming! No matter what the results are, Tyler will still be Tyler. He will be our handsome boy who loves his brothers, loves to play the computer, has a wonderful sense of humor, and a bright personality!
Sitting in the waiting room this week, I looked around. There were beautiful children with a variety of challenges. I looked around at the parents who were patiently entertaining their children, doling out snacks, and calming outburst. Did they know what they had signed up for when they decided to have a child? Do they wonder what their child would be like without the limitations? Do they have doubts about their ability to parent their special needs child? I certainly was surprised to find out my baby was going to be born with Down Syndrome. I am constantly asking what I could be doing to help Tyler reach his goals faster. And yes……….yes, I wonder how my life would be different if I had 3 “typical” children.
The fact is, at the end of the day, I am blessed to be Tyler’s mom. I don’t know what I did to deserve the right to know, love, and raise this amazing life. I want to take a minute to share my favorite article by Emily Perl Kingsley. It says it all………
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
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 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.
