Welcome to Holland.....a Follow Up and the Amsterdam International

I was given 'Welcome to Holland' when Cameron was quite young and it was the first time that I read something that spoke to me. This person knew how I was feeling, I had found a person who understood me.

Years later the 'Follow Up' was circulated and once again I read my own feelings on the page. My life had progressed along with the writers and I felt comforted by the words, I was not on my own in this foreign land.  

Some people will read this post and sigh because they have read these words so many times and others will read this for the first time and will probably shed a tear or two. (So what's new around here?)  Most parents of children with special needs feel an affinity with these beautifully written words.

Welcome to Holland
Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved.


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 Rembrandt.

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 t
hings ... about Holland


copyright 1995-2003 all rights reserved tjf 20021125

And a Follow Up:

Follow up to Welcome to Holland by Cathy Anthony Parent Advocate

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.

I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger - the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad. I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me  in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned.

Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest.

And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its' tulips, windmills and Rembrandt.

I have come to love Holland and call it home.

Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

(Cathy Anthony is a parent, advocate and presently the executive director of the Family Support Institute in Vancouver, BC)

Thank you Emily and Cathy for putting into words so beautifully what a lot of us struggle to express and for the comfort you have given so many of us by helping us realize we are not alone in our thoughts. Holland isn't that bad now that we've taken a breathe and gotten over the shock of it all.

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Addition to post on 15.9.2011

Now there is another instalment to the Holland saga - Amsterdam International. Written by Dana Nieder on her blog Uncommon Sense.

Dana talks about what it is like to land in Amsterdam's International Airport, in Holland, and realize you can not leave. This is a more in depth look at the emotions a parent goes through before reaching acceptance and settling in Holland.

Amsterdam International
Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.
(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this god damned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)
And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

(Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”)
Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010 All Rights Reserved  mailto:uncommonfeedback@gmail.com

Blog - Uncommon Sense = http://niederfamily.blogspot.com/2010/10/amsterdam-international.html

I'm sure when Emily Perl Kingsley wrote Welcome to Holland she had no idea the impact her words would make around the world.

Comments

  1. Yes, having a child with special needs is definitely like landing in a foreign country where you don't know the language and have no idea what you're supposed to do.

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  2. It's the steepest learning curve, isn't it Sharon. In the early days I used to become overloaded with new knowledge. It's amazing how quickly you become comfortable in your new existence.

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  3. I am always searching online for articles that can help me. There is obviously a lot to know about this. I think you made some good points in Features also. Keep working, great job ! ルーレット

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  4. Thanks for the blog post buddy! Keep them coming... last minute camping niederlande

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  5. None of you are talking about what happens 20 and 30 years later. That is the part that is truly a challenge. We are older and they are still stuck in adolescence...if that. This is the hardest and most challenging part of all.

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    1. When I wrote this post in 2011 Cameron was in his teens and now in 2021 he is 25 years old. I was given a copy of Welcome to Holland when Cameron was little. If a child is a baby or young this story resonates so strongly with the loss and confusion you experience. However you are correct, for some of us it gets harder as they age and stay stuck in a child or adolescents brain. Cameron is developmentally only a 2 ish year old but he is now a 25 year old man.

      When I was posting on this blog almost every day Cameron was young so it does not reflect the daily challenges of parenting an adult child. My posts dropped off mainly because I grew weary and was concerned about appropriateness at sharing some stories which would make some people feel uncomfortable - however it is my daily reality.

      I wish society would acknowledge more openly that disabled children grow up and become disabled adults. Maybe not as cute and definitely not as easy to manage. People don't talk about the exhaustion their childhood leaves you with and that it never stops. I have many started by unfinished blog posts about the realities of our lives now - one day I may finish them and post them.

      I hope there are good days for you and that you are able to access some support. I understand the frustration, grief and tiredness. Sending you a hug.

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  6. I hadn't ever thought I could leave a comment on any site but particularly this last comment has prompted me to say a little.

    I met my wife to be and her disabled son in 1998 when he was 3. I guess I had visited Amsterdam though my sisters Downs son, so meeting and interacting with him wasn't frightening for me. In NZ there's fairly good disability support though there's always room for improvement.

    For us, after accepting and settling into life, things were easier in those infant and childhood years. They definitely got more difficult in the adolescent years. Our boy has a mental age of around 6 with some intuitive abilities of maybe a 10 year old. Consequences of actions don't register. With hormones kicking in, mood swings were common and tantrums .
    At around 18 we realized he was very reliant mum and dad (us) and the older he got the harder it would be for him when one day we would be around. Though hopefully this would be years off, getting him settled into a long term living arrangement, suitable to his level of care, would be best and "kinder" for him.

    Please don't get me wrong, this will be different for everyone. There's a big chance our boy will live into his 50s or 60s, maybe older and the time to move was right for him.

    If took 3 months to find the right place and 2 years for him to accept it was his home. Nearly 10 years on and while he would still prefer to live with us he's living a full life. For us, the unrealized stress of constant care and "watching out" for his safety and those around him, was a mighty weight off our shoulders. Though we've had to put certain parameters around his life we talk to him often, have him visit some weekends and go to visit him.

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    1. Thank you for sharing your journey. Society really doesn't understand the challenges faced by parents as their disabled children grow older. I'm glad you've been able to arrange living arrangements that work well for your son. It is such a scary step and it takes bravery to take it.
      The more we all share our stories and talk about our journeys and challenges the more we can educate and open our communities eyes.

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    2. Much of what I have read here resonates with me. My severely disabled son is now 27yrs old. I too was given ‘Welcome to Holland’ when he was very young. Almost 3 years ago my son moved into supported accommodation, the hardest decision I have ever had to make. It’s still hard but we were so concerned about his future it felt the right thing to do. I have written much about my experience on my blog if anyone would like to read it. ourlearningdisabilitiesblog.co.uk

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    3. I can imagine the stress you've gone through in moving your son into supported accommodation. Our goal is to create independent accommodation on our property so our son can live independently with support whilst we can keep an eye on things. At present I have zero trust of other people looking after him fulltime. Thanks for sharing your link - I will go and read you blog.

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