We have all read, or at least heard of, the Emily Perl Kingsley essay made famous by Dear Abby. You know the one, about if you have a child with special needs, it’s like having a wonderful vacation planned for Italy but you end up going to Holland instead. It goes on to say how you can spend the whole time beefing about missing Italy or you can just enjoy Holland. Holland’s wonderful! It’s not as flashy and stylish but has its own special charms, etc. It’s very inspirational. I’ve always loved the essay, especially after I had a child diagnosed with special needs. But it fails to grasp one important component that crops up the moment you begin this new, unexpected journey.
It’s the fact that once you’ve been re-routed to Holland, you’ve still got to spend two-thirds of your vacation on the damn phone finding your luggage, which is sitting in the airport in Rome. Yup, this is what it is really like when the airplane of your life has landed in the country called Special Needs Child and you become the chief translator, problem-solver and point man.
Suddenly you are struggling with a new language, new country, with a sweet, kind, vulnerable baby in your arms and you don’t even have even have a hotel reservation. So you grab a local map, quickly exchange your money and get on the phone. Doctors. Specialists. Scheduling tests. Insurance companies. Scheduling further testing. Insurance companies. Explaining to friends and relatives what’s going on. Billing departments. If this is a later flight, explaining to your wonderful “Dutch” child what the tests are for. Finding the appropriate school. Surviving bad doctors. Insurance companies. Learning to trust your instincts. Driving to physical therapy appointments. Insurance companies. Waiting for your calls to be returned. Money. Insurance companies.
Your vacation is spent in problem solving mode. Sure, you glance out the window from time to time, noticing the beauty and serenity of Holland, but heck, first you’ve got to find a place to stay. So you plow ahead, immersing yourself in fine print, consultations and decisions. “Is this the right diagnosis? Does he need occupational therapy too? What the hell is occupational therapy and how do I explain it to my mother? Am I ignoring my other “Italian” child? Where are those forms? How do I communicate to the teacher/doctor/therapist what my child needs? The doctor said more playdates but when do I schedule one when that stupid little friend’s mother won’t call me back? Am I explaining my child’s condition properly? Should I even explain at all? Am I violating his privacy? Meds=Good? Meds=Bad? If I don’t do the fifty pages of physical therapy homework the therapist gives me to do with him every week, am I a bad mother, forever damaging my child’s chance for a normal life? Should I make dinner and just read the kids a book (not wanting to neglect the “Italian” child) or practice fine motor skill scissor use, with an emphasis on grip, hand position and spatial placement? Am I micro-managing, or am I too casual, neglecting the most important component?”
You’re not even thinking about Italy. You just want to get out of the frickin’ airport terminal.
Once you’ve located most of your luggage (gotten some kind of working diagnosis, gotten your child’s “team” in place, know where to go for therapies, tests, etc.) you’ve still got to learn how to speak your child’s special language. Now this learning curve is steep since you first have to understand how his brain works…how he learns…what he needs. Sometimes that is really, really HARD! These are not easy kids and it seems like the entire world expects you to suddenly be fluent in Dutch, understand each and every nuance and inflection of your child and their particular dialect. Your little Dutch child will bring out the best of you but some days…hell, some weeks and months, it’s radically trying. You are now expected to be the expert on Holland and you just got here yourself! What if you give a specialist the wrong directions? What if you lead your innocent, trusting child into harm’s way just because you make one little, tiny error in judgment?
Finally, you will get pretty comfortable with each other. You play with your Dutch child in your small apartment in Amsterdam. You walk the streets, his warm hand resting in yours.
Holland is beautiful, once you know your way around.
But then your travel agent messes you up again: your tickets to Italy get straightened out. And just when you’ve gotten Holland figured out…your Dutch visa expires. Now, you’ve got to move to Italy. With your Dutch child.
School. Friends. The school bus. Life.
True, you already know how to speak Italian. But your child, well, he just figured out how to negotiate the swing set in the backyard.
But it’s immersion time. He’s got to get fluent in Italian…fast. Your child, this child who thinks in Dutch, this child for whom Italian will always be a second language, will now be a stumbling foreigner among a country of natives. Every child with special needs has to learn how to negotiate their way around Rome. This will be time that you just want an Italian kid. You’ll hate yourself but you’ll wish you had landed in Italy. You would never want a different kid but you will wish for a different version of your kid. Same girl or boy, but easy and smooth, casually strolling the streets of Italy. No matter that your child is one of the most amazing people you’ve ever met. He’s still an outsider and it is agony to watch. You can almost glimpse your beloved baby, free, liberated of all his misfires, social faux pas and eruptions of despair. A child that doesn’t cause your gut to twist as you watch him try to make a friend, your muscles tense and straining as you prevent yourself from running up to the other child to explain that “he’s just learning Italian,” stopping yourself from begging that sophisticated little boy or girl to just give him a chance.
But you’re in Italy now. Big, sprawling Italy. And as nice as Italians are, you are going to quickly come to grips with the fact that they are going to occasionally look down on you and your child. You’ll be misunderstood. Those weird foreigners, they’ll think. But that’s okay. Because those people, those ones that look down on you and your child for not being native Italians, well, screw ’em, because they’ve never once taken a trip outside of their country.
But someday they will. Someday, they’ll step on a train heading for Happy-Retirement-in-Rome and end up in Husband’s-Got-Alzheimer’s Turkey. Or perhaps they’ll go to Venice for a trip and get hijacked and taken to Daughter-With-A-Drug-Problem Chechnya. They might never make it to Holland but trust me; God levels the playing field.
So, you’ve made it to Italy. You know your way around, your child is happy but you know you will never call Italy “home.”
You’ve become too sophisticated to ever settle down. You’ve seen too much, learned about so many other ways of life. You are bilingual, understanding the trials and problems of displaced, re-routed outsiders. You may still feel alone but you are not.
Congratulations. You are now a citizen of the world.