A Trip to Holland: My Take on this Special Needs Poem
It is really hard to describe the range of emotions that a parent has when their child is diagnosed with Autism. For us, we had known that something was ‘off’ with S for some time- so the diagnosis was a bit of relief mixed with a ton hopelessness. Getting a formal diagnosis left me feeling so desperate and so out of control that I still can’t even accurately put it into words.
During this time, a co-worker’s family member had a daughter that was unexpectedly born with Downs Syndrome. This came as a complete shock to the family and it took them a few weeks to settle into their new role as parents of a special needs child. Once they began to come to terms with their daughter’s diagnosis, they sent the following poem out to family to help describe where they were emotionally. My co-worker quickly relayed the poem to me, in hopes that it would offer some support.
The poem is called “A Trip to Holland” by Emily Perl Kingsley and a version of the poem may be found here. I have copied it below for those who can’t access the link:
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 Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several 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 guidebooks. 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. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. The loss of that dream is a 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.
Now, initially, this poem made a great deal of sense to me and really helped me through that first week of coming to terms with S’s diagnosis. After all, S is still the same little boy that I have adored since I first held him in my arms. He hasn’t changed, we just now know why he is the way he is. I embraced the idea that S’s diagnosis was just a little detour in life, an unexpected journey into new territory… I bought this poem… hook. line. sinker. After all, it is a very logical poem that really makes coming to terms with this diagnosis seem very straight forward and simple. What was not to like?
But, what this poem doesn’t touch on, is the reality of this detour. This is not as simple as leaving for Italy and landing in Holland and not even realizing you were headed in the wrong direction in the first place. When your child is going through the process of an autism diagnosis, you know that it is coming.
You know your plane is heading off course.
But, you tell yourself that you must have remembered the route wrong, or that each pilot has his own flight path, but that your final destination will be the same. Once you realize that no, your pilot is most certainly taking you somewhere else, you will desperately do everything in your power to stop him- but, there is nothing you can do- because you are trapped in the plane and there is no. way. out. In fact, you may have to fight a million battles just to get him to land.
Then, once you land, not only are you forced abruptly off the plane- but you are left alone to figure it all out on your own. Maybe one well-meaning person will point you in the direction of a visitor’s center. But, I can assure you that all of the information you will need is in another language and will cost you twice as much as you have brought for your trip. Sure, you will learn the language and the land, but how will you survive in the meantime? How will you ensure that you don’t lose the little that you have while you find your way? Let’s not forget to mention that all of the ‘best’ information changes daily and most of it conflicts with each other. How do you know what to believe?
Once you have decided to make the best of your trip to Holland, you will find that in order to actually see any of the sights, you will need to take a seemingly impossible to navigate travel system. 75% of the time, that system will not take you to the sight you want to see. You will constantly have to transfer cars in an attempt to get where you are going… when one fails, you move on to the next. Except, each transfer costs you thousands of dollars and days of your time and before you can transfer, there is a ton of paperwork to fill out and applications that need to be approved. And, there is no guarantee any of this will get you closer to where you want to go. Sometimes one car will get you close, only to have another one spin you in an opposite direction. All the while, well meaning friends and family try to assure you that you are, indeed, in Italy.
Overall, “A Trip to Holland” is a good way of explaining the basic emotional process that you go through to friends and family. The ultimate message that I received from this poem is that you need to accept that things are going to be the way they are and that you might as well enjoy them. After all, the only other option is to be miserable… and that is no way to live life.
I have accepted that my son has autism and I am doing my best to enjoy every day that I have with him; after all, there are many mommies out there who won’t get to tuck their children in tonight. I am so very grateful for all that our family has in life.
However, it doesn’t mean that S’s autism has just caused a simple little detour in our lives. It is not like taking a wrong turn and being delighted to find a new awesome coffee shop around the corner. It is like everything you need or want to do in Holland is ten times more difficult and costly than in Italy. No matter what you do in Holland, you feel completely alone and like you stand out like a sore thumb… and you just know you would have blended right in in Italy. Not to mention, this is NOT a vacation. You do not get to leave and go back home one day… the life you knew before the diagnosis and the one you had always envisioned for your family in the future is gone. Your child will deal with this detour forever.
When you are raising an autistic child, your Holland is filled with a lot of additional, and very difficult, obstacles… and everyone around is sipping coffee in Venice.