Autism Tales: Reflecting on Holland

A proud mom from Grant/Adams Counties shares about her son.

We recently celebrated Gustavo's 16th birthday.  He's more than just a little taller than me---  it still seems impossible but you can't deny the pictures.

When I first found out Gustavo had autism I was given the phone number to a program called Parent to Parent.  I never called.  Thankfully they were persistent and knew something I did not.  I needed to talk.  I had questions that the doctor could not answer.  Some questions no one could answer.  I wondered if I had done something wrong while pregnant.  I spent hours thinking about what I might have eaten or drank that could have caused autism.  There is a story on this blog that tells more about those early days-- Autism Tales: He Gets It From Me.

Parent to Parent is a program that connects parents of children with special needs with parents of newly diagnosed children with special needs.  In the reading material Jennifer, my helping parent had left me I found this story on brightly colored paper.  I keep a copy folded in my wallet.

Here is what Emily Kingsley and Jennifer gave to me.

"Welcome to Holland:  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."