Autism Walk Northland

Personal Stories

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 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.

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©1987 by Emily Perl Kingsley. All rights reserved.

The stories you will read here have all been submitted by people who participate in the walk. We haven't changed their words, because we wanted them to share their stories with you. Although Autism awareness is growing, there is still much work to be done. We hope that these stories will help give you insight into the challenges - and joys - these families face.

If you'd like to submit your own story, please email it - along with no more than three photos - to info@autismwalknorthland.org

Some facts about autism (taken from the Autism Speaks website, located here):

Did you know ...

Autism now affects 1 in 110 children and 1 in 70 boys
Autism prevalence figures are growing
More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
Autism is the fastest-growing serious developmental disability in the U.S.
Autism costs the nation over $35 billion per year, a figure expected to significantly increase in the next decade
Autism receives less than 5% of the research funding of many less prevalent childhood diseases
Boys are four times more likely than girls to have autism
There is no medical detection or cure for autism

Prevalence vs. Private Funding

Leukemia: Affects 1 in 1,200 / Funding: $277 million
Muscular Dystrophy: Affects 1 in 100,000 / Funding: $162 million
Pediatric AIDS: Affects 1 in 300 / Funding: $394 million
Juvenile Diabetes: Affects 1 in 500 / Funding: $156 million
Autism: Affects 1 in 110 / Funding: $79 million