It’s not always Holland
A short vent from a mom of a neurodiverse child…
If someone shares the essay “Holland” with me one more time, I may scream.
If you don’t know what I’m talking about, “Holland’’ was written in the late 1980s by Emily Perl Kingsley, a parent of a child with Down Syndrome. Intended to comfort other parents who struggle to come to terms with having special needs kids, the essay likens having a child with special needs to planning a fabulous trip to Italy but unexpectedly ending up in the less exciting country of Holland. The intent is to help parents find their paths: even if not the preconceived blissful one of having a neurotypical child, one that provides a different yet still beautifully fulfilling experience.
Parents (like myself) of “neurodiverse” kids often come across this essay. It’s frequently read aloud at back-to-school nights, posted in social media support groups, and emailed by well-meaning friends and family who stumble across it and send it to you with the requisite heart emoji.
I am not knocking the essay; it’s lovely and not dismissive of the painful sense of loss parents of special needs children feel. In fact, the first time I heard it, I was moved to tears. I often am in awe of my child’s kindness, intelligence, sense of humor, and amazing talents and think to myself, “This is not what I expected but gives me joy beyond my wildest dreams.”
But you don’t always wind up in Holland. Sometimes you find yourself in destinations like post-nuclear explosion Chernobyl or the Gowanus Canal on a hot summer’s day. While the essay acknowledges the feelings of loss and difficulty, it doesn’t quite own up to the reality that your journey will sometimes take you to some really, really, difficult places. Places hard to recover from and difficult to escape from once you are there.
I have this fantasy about going to my next back-to-school night and reading an essay called “The Holland Tunnel.” I would speak about the feelings that so often come up when you are struggling to find the right doctor/drugs/therapies/schools. Or how it feels when you are in line at Starbucks and see someone stare at your child for just a little too long. These moments are far from the lovely tulips in Holland.
Emily Perl Kingsley wrote a touching and uplifting essay. But sometimes, and for some of us, we need recognition that raising neurodiverse children is not always a canal cruise. It’s sometimes a soul-crushing voyage that takes you places you don’t want to be.
A friend of mine who battled cancer once told me, “I really hate it when people tell me how brave I am. I’m not brave. I’m scared sh!tless. What would really be helpful is a simple acknowledgment that what I am going through truly sucks. Sometimes I think people try to make themselves feel better by saying something inspirational. What would make me feel better is if they were ‘real’ about my pain — and maybe sent me a super funny joke.”
Those comments stuck with me. I’m not fighting cancer, but I want people in my life to acknowledge my situation as difficult and sometimes upsetting. I am touched when my friends want to do something for me, but I don’t want to be brave or uplifted. I want recognition, and I also want to laugh, so perhaps instead of sending “Holland,” maybe send me a fun video of Tom Holland, hint: this is my personal fave.
“Holland” by Emily Perl Kingsley
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.
