If you have a child with special needs, you have undoubtedly read “Welcome to Holland” by Emily Perl Kingsley (included below – you might want to scan down and read it first if you aren’t familiar with it). It’s a lovely piece which takes us by both hands and implores us to count our many blessings, celebrate our diversity and ultimately accept that unpredictability is the spice of life.
It’s beautiful and altruistic. I admit that I still get teary-eyed and sentimental when I read it. It’s also a great INTRODUCTION to life with a special needs child. But, I’m sure even Ms. Kingsley would have to admit that there are a few key concessions missing.
For starters, where do I find these “guidebooks” that she speaks of? Let’s be realistic…especially with a spectrum disorder such as Autism, there’s no book (even in Dutch) that can assist you in traversing this journey. Each child could have their own “guide”, and it would be outdated daily, sometimes hourly.
And why must we stay in Holland anyway? Can’t we have a summer home on Lake Como? Really? Does life stop because you have a special needs child? Does Peter’s Autism mean that I’ll never facilitate an editorial board meeting again? I can’t finish my education? I don’t think it has to be that way. Certainly right now it can’t be any other way. That’s okay, in fact, that’s optimal. I am learning more being my sons advocate than I could in 20 years of PR work. But I hope to take what I’ve learned here in Holland and share it in Italy. After all, they aren’t worlds apart.
Finally, I’m not so sure that my life in Holland is slower-paced than my life in Italy. Sixty-hours a week working for 10,000 children was far less taxing than 168 hours a week working for one. I have the amazing privilege of a full time support system. A wonderful husband, a mother and father-in-law who can be credited with a majority of the success Peter has had, and six days a week of therapy with the most talented and devoted team on the planet. Peter’s “posse” is formidable. Yet still, I hardly have a moment to catch my breath each day. Add on interviews with preschools, doctors appointments and two hour long phone calls with my good friends at Medicaid, bathtime, meals, playtime, etc. Even with the world class team I’ve been afforded, I often long for 12 hour days of meetings, emails and conference calls. Italy might be more glamorous, but I can assure you that Holland is hoppin’ too.
Yet there’s one passage that always resonates with me.
“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.’” (Kingsley, 1987)
I can’t argue there. When you are the lone person who doesn’t speak Italian, in a world where most “took a semester of Dutch in high school”, it’s hard to find common ground. What’s worse is that you know just enough Italian to feel forever on the fringe…like you could order breakfast but that’s about it. And after you’ve had a taste of Italy, you so desperately want to shout from the cupolas that you’ve seen the Sistine Chapel, you LOVE lemon gelato, the Roman catacombs are fascinating…but it’s not enough. You’re just a tourist. Your life is windmills, and tulips and Rembrandts, which are all amazing in their own right… It’s just that since everyone is so enthralled with Italy there is no need for them to take a trip to Holland; to appreciate its unique beauty.
You love Holland. You couldn’t imagine anything better, even after glimpsing the glamour and je ne sais quoi of Italy. But Italy is not home. It’s a place you can visit; a place you can even yearn for once in a while. But ultimately, it’s your job to ensure that Holland isn’t forgotten amongst the effervescent limelight of Italy.
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.