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.

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We have just had to add a new "guidebook" to our journey. As we have our ups and downs of learning how to meet Logan's needs with his Optic Nerve Hypoplasia (ONH), we now have it confirmed that Logan has Asperger's Syndrome which is part of the Autism Spectrum Disorders. I have suspected it for a little while, so this summer we took steps to get him tested and just received the results this week. It's a relief in a way, because instead of thinking that everything is related to his visual impairments we now know what else causes some of his challenges and we now have more places to turn to and resources to utilize. On the other hand, it was really hard to have to deal with another "label". I especially feel bad because I am not the best social person and learning social skills will be an area that Logan will have to work on. James is a true strength as he tells me that nothing about Logan has changed. He is still the same amazing, wonderful, loving child. So now we have more resources to help him and can gain a better understanding of what makes him "him" and how to help him through school and life. We sure do love Holland:)