In 1987, Emily Perl Kingsley wrote a brief essay about how it feels to be the parent of a child with special needs. The gist of the essay goes like this: When you are preparing to become a parent, it’s like planning a trip to Italy. You’re incredibly excited for your Italian vacation, and you buy all sorts of guide books and plan your trip meticulously. Then, when your plane lands, the flight attendant announces you have landed in Holland, and there you must stay. In short, this sucks at first because it’s not at all what you planned, but once you get used to the idea you realize Holland has all sorts of amazing things going on and if you spend your whole life wishing for your lost Italian vacation, you’ll never really be able to embrace the Land of Tulips and all those wonderful Dutch people for who they really are.
After becoming the parent of a child with special needs, countless people referred me to this essay. When first wading through my stress and grief, Kingsley’s words brought me comfort as they affirmed what I was slowly beginning to understand about my child: Her life will never be like that of her peers, but frankly, that’s okay. It will be an amazing life none the less.
But since those early months of stealing hope and recognition out of the fog of grief, I’ve developed an ongoing annoyance and disappointment with this concept as my daughter now approaches her sixth birthday. I get it: She’s different. Our life is different. My problem with Holland and the idea this essay represents is that it simply doesn’t go far enough. I thank Kingsley for her thoughts, which have no doubt inspired and comforted thousands of special needs parents over the years. I’m simply asking for more.
I now realize that even though Holland is great, you can still see Italy, because on this magical and metaphorical map of Europe, Italy is right next door. You can see your friends and family frolicking in the Tuscan sun while you’re trying to teach your child to walk in wooden shoes. And somehow you’ve got to get your kid to understand how delicious Gouda cheese tastes when she can see all her peers slurping up gelato right across the way. This is the reality of being a parent with a child who is different. And the greatest pain comes when you realize all those kids running around Italy can still communicate very clearly with your Dutch child. Even though they speak different languages, she still somehow understands every remark, jab or unkind question about her disability. Yet she can’t seem to get a word of Dutch in edgewise.
So I’m proposing a new metaphor, because I think we could all benefit from looking at the landscape of disability in a more realistic, inclusive light. I would like to tell every special needs parent that having a child who is different is like landing, along with every other family, in a foreign country. We’re all flying blind when it comes down to it. But let’s say, for the sake of metaphor, we land together in France. It’s a brave new world out there, and we are all bound to have a trip with lots of ups and downs, but the reality for a family whose child is differently abled is that it will be a very difficult, very challenging experience for them. They will see the other families wolfing down a baguette, just to realize their child will never be able to chew bread, or at the least is wheat-intolerant. Other people will zip all over town to see the sights, and for the child with a disability, the trains will often seem on strike. Families will travel in huge groups to the Eiffel Tower, and the families of those with disabilities will have to acknowledge that their child may never get to see the top. This is the reality. We’re all here, all together. Placing the disabled and their families in the metaphor of a “different” country does not help any of us see, embrace, and work like hell to make the reality something more kind, more realistic and more humane exist for all of us.
It wasn’t until the birth of our second child that I realized how painful and isolating my experience of the “Holland” concept felt. Before giving birth to our son, a big healthy boy, I’d begun experiencing anxiety about his arrival in full force. Having a healthy baby somehow meant straddling the fence between Holland and Italy, explaining to a child who could go and do anything, that unfortunately, our family life was in Holland, but we’d do our best to make sure he could visit Italy as much as possible. Would having a second child force us out of Holland, a place we’d worked so hard to create, love and accept? How does a parent in this position mediate the needs of both children, and deal with the stress of a “bi-cultural” life?
That’s when I decided to screw Holland, and invite other people to join me. Nothing against the lovely Dutch and their country, but we’re moving to France. And yes, the rail won’t always work for us. I’m sure at times the people will be rude. We may have to pass on the baguettes, but somehow and someway we will find an existence that incorporates all of our needs, and doesn’t allow us to isolate ourselves or our family because our first born is different. Nor does it allow other people to isolate themselves from our challenges, because they can and do exist and it is part of the human condition for everyone to recognize that. Hopefully, with a 35 hour work week, we might even have time to talk about it.
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| Here is what my backpack looked like after arriving back in Austin from a transatlantic flight. Seemed like a pretty great metaphor for the wear-and-tear of constantly trying to shuttle back and forth between two countries. Like my backpack, it often leaves special needs families feeling tired and haggard. So vive la France, ya'll! |
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