If you're a fan of the show "Lost" you probably recognize the quote in my title for this post. In the first season, the survivors of Oceanic flight 815 find themselves stranded on an island after their plane crashes over the ocean in mid-flight. After a series of inexplicable events, they begin to realize that this is no ordinary island. They stare at each other with trepidation and wonder where in the world they are.
Coming to realize that your child has autism is a little bit like that (minus the plane crash?). You're going about your business, being a family and raising your kids, when finally you experience a long enough series of unusual events to finally cause you to stop and ask, "Guys, where ARE we?"
In an attempt to answer that question, you may stumble onto the essay "Welcome to Holland," by Emily Perl Kingsley. I have to admit, when I first read it I thought, "you've got to be kidding me." Don't get me wrong, I found it beautiful and well-written, but incredibly far-removed from my reality. At the time, my twins had just recently been diagnosed with autism. I could no more relate to the author's Holland than I could to her Italy. But if I can carry on the metaphor of parenthood as a journey to another country, here's how I would describe ours:
You board the plane to Italy, prepared with maps and guidebooks. When the plane lands, you take an unplanned detour through quarantine (NICU) but as you leave you are greeted with "Welcome to Italy" signs. So far as you know, you're in Italy like everyone else, just as you'd planned.
Only as time goes on, you find yourself taking longer to reach some of the great destinations than other families. No problem, you think, we'll get there in our own time. Then you find that you just can't seem to find some of the destinations. You check your maps again but keep running into dead end roads. You ask for directions and people look at you like, "you mean you haven't seen the Sistine Chapel yet?!" and give you directions that make it sound SO EASY to get there. You follow their instructions to the T -- turn left here, right there... but still you wind up at dead ends. Your family appears to be alone at these dead ends.
And then it gets worse. You start to wonder if you're in Italy at all or some kind of parallel universe. Because while everyone around you seems to have no problem navigating the streets and towns of Italy, you have discovered that the roads and countryside are littered with landmines. Landmines that you can't see and can't avoid, but that no one else seems to run into. Picture something Acme-style where there's a big blast, you turn all sooty with your hair singed, but then you're ok -- painful, but not fatal. People see the explosions but most of them, rather than trying to help, either try to tell you the landmines are all in your head or that there must be something wrong with you if you keep walking into them. A few kind souls offer you tips on putting out campfires in an attempt to help, but knowing how to handle campfires doesn't help much when it comes to dealing with landmines and other explosive devices, so despite their good intentions, their advice proves unhelpful. You question your sanity and wonder what in the world ever made you think you were cut out for a trip to Italy in the first place.
Eventually you throw your maps and guidebooks away and stop asking for directions, because none of that helps. Somehow you're stuck in a parallel world with explosions and air raids, smoke everywhere and no one else sees it. Whatever, it's your reality and so you deal with it. You try to develop your landmine detection and disarming techniques. You work on your evasive maneuvers. You try to feel your way around in the dark and you constantly crash into unseen obstacles. You forget all about some of the great destinations and find yourself just trying to get through the day in one piece. And yet, sometimes, you are treated to an amazingly beautiful sunset or flower growing up through the rubble, such beauty in such a chaotic world it takes your breath away. You look around, but just like the chaos around you, no one else sees the beauty you've found either.
It is in this desperate warzone that someone finally hands you a lifeline. They tell you what you have sensed intuitively for a while but didn't really know -- you're not in Italy after all. No wonder your maps kept getting you lost. They hand you a flashlight to better see the obstacles around you, and give you some maps and guidebooks that actually relate to where you are. And then send you on your way to figure them out on your own.
At least now you know who to ask for help. You seek out therapists who help teach you how to navigate around the obstacles, and better landmine detection techniques. You find other parents and teachers who understand the difference between campfires and explosives and can offer you some truly helpful suggestions.
Slowly, the smoke around you starts to dissipate and you can see more clearly the landscape around you. When you do, you are amazed that you made it this far. You breathe a sigh of relief, because now you can confirm that the obstacles scattered across your path are real and not imagined. What's more, you begin to see that there are other families blazing similar trails along the countryside, some in the distance and some nearby, and you realize that your family is not alone after all. You begin to notice trailmarkers along your path, indicating that other families have passed this way before. While this rocky and sometimes treacherous terrain doesn't have the sophisticated and detailed maps of Rome, neither is it uncharted territory. You leave your own trailmarkers in hopes that you can assist travelers who come after you.
With renewed strength and greater understanding, you realize you still have a long and cluttered road ahead and so you press on. You revel in the beauty of this world that becomes more and more apparent with time, even more so as you get better at navigating around "problem spots." Although you realize that Italy must be beautiful in its own right, you find yourself feeling immensely blessed that you get to experience the amazing qualities of the land you are in.
And where is that, exactly? It's not quite Holland. I think the essay, "Holland, Schmolland" by Laura Krueger Crawford captures it better :).
Join me tomorrow as I share some of the customs of our particular "Schmolland," and feel free to share your own!
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