There’s a very famous poem called “Welcome to Holland,” written by Emily Perl Kingsley. It’s a beautiful poem, if you haven’t read it.

To summarize, Kingsley describes what it feels like to raise a child with special needs. She says that planning for a child is like planning an exciting trip to Italy. But when your child has a disability, your plane winds up in Holland instead.

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Holland isn’t as flashy or exciting as Italy. But it’s pretty, slower paced, and has windmills. And even though you really wanted that trip to Italy, you appreciate Holland for all of its beauty and serenity.

I used to love that poem. I would post it on my Facebook page and tag moms I thought would appreciate the gesture. I’ve even been sent that poem from time to time by well-meaning loved ones. And I appreciated the gesture. I still do.

But the truth is, in my house, autism is nothing like going to Holland. Autism isn’t pretty. It isn’t serene. It isn’t slow paced.

In my house, autism is more like trekking through the jungle without a map. It’s loud. It’s confusing. It’s unforgiving.

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The jungle is filled with cries that I can’t understand. It’s littered with obstacles that take all my strength to work through. There are dead ends around each corner, forcing me to backtrack and rethink my approach.

Don’t be fooled by the media, portraying the jungle as exotic and intriguing. I can assure you that’s only on the outskirts. Deep in the trenches, the jungle is often harsh, and it rarely sleeps.

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The jungle can be a lonely place sometimes. It’s isolating. Sure, there are times I could call my friends in Italy, but I’m simply too exhausted from my daily excursions.

Luckily, most of the locals are very friendly and eager to help. You see, these locals have been on their own journeys for quite a while now. They are much more knowledgeable than I am.

But they’ve split into different tribes. Each tribe has their own idea of the best path. And they end up sending me in opposite directions.

So I try to absorb all the knowledge I can from each of them, and I continue to push through – knowing I will wind up lost and need their help again.

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Don’t get me wrong. There’s fun to be had in the jungle. There are times of exploration and silliness. It just takes a lot more planning than it would in Italy or Holland. It takes more effort to make sure we stay safe.

There are also moments of intense beauty – like when the sun sets just after a storm. The entire sky lights up with colors I haven’t seen in a long, long time.

And there are moments of surprise and accomplishment – Like happening upon a hidden waterfall after a long, strenuous hike.

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Those are the moments I hold on to – Those are the moments the jungle doesn’t seem so scary.

This journey we’re on is nothing like I ever imagined. But I will continue to keep us moving forward, even when I feel weary, because my little ones are worth it.

⚠️ UPDATE! ⚠️

We’re now two years into our autism journey, and the jungle is much less scary! Many days, I’d even call it enchanted!

My boys are in kindergarten now, and they’re thriving! I think their teachers are learning just as much as they are. 😉

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So, what’s changed? Where do I start???

1. Over the past two years, we’ve worked hard to help the boys communicate effectively. This was the most critical task for our family.

One of my boys uses an AAC device now. It’s been a real game-changer for him. The screams that used to fill our house, have now turned into words that we can understand! I’m so happy for him.

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2. I’ve also educated myself by reading autistic blogs and books. One of my favorite blogs is Edge of the Playground. The author was once nonverbal, like one of my boys. I’ve gained great insights from her.

Also, when I have a question about ANYTHING, I turn to Twitter, and use #askingautistics. I can’t tell you how much I’ve learned from them, and how thankful I am for their candid responses.

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3. We’ve gotten out more! I know it seems like a daunting task, but start with just one outing. Find a local autism group through Facebook, or through your local Autism Society.

Our area has a really active autism community, with multiple activities every week. The boys have joined a running club, gone ice skating, and started swimming lessons.

If you feel like you’re lost in the jungle, reach out! You’re not alone. Start following some autistic bloggers on Facebook and ask questions.

 

Follow our journey on Facebook at Not an Autism Mom! I share articles, resources, and more to help you on your own journey. ❤


Not an Autism Mom
Not an Autism Mom

I am a daughter, sister, wife, friend, and MOM. I write about parenting, autism, prematurity, and whatever else comes through these fingertips. Enjoy!

    31 replies to "Autism Is Nothing Like Going to Holland"

    • […] through the jungle without a map. It’s loud. It’s confusing. It’s unforgiving…….Click here for the whole […]

    • dad|THEORY

      Brilliant. Lovely piece!

    • aristotleandarchimedes

      Beautifully written! I am the mom of two autistic boys and you summed up the experience so well. Our kids are so challenging, but they bring a level of closeness and love that no one else can. I can’t wait to read through the rest of your posts!

    • Anonymous

      I love this Meg! Keep up the amazing work. God knew what he was doing when he gave you YOUR boys. Xo.

    • Katie Feavel

      When we first began this journey, a friend sent the Holland poem to me. What you’ve voiced is exactly how I felt about it. The intention is good and the picture painted is oh so lovely, but it just isn’t our reality either. I love the way you’ve framed this and it’s what I needed to hear today <3

      • Not an Autism Mom

        Thank you for reading and commenting. It’s nice to know I’m not alone. ❤

    • dlberek

      Reblogged this on Celebrating Individual Abilities and commented:
      “Welcome to Holland” is a lovely poem, and so is Holland. While the piece offers comforting thoughts for parents of an autistic child, it is not always a realistic portrayal. A jungle is at times more accurate – wild, untamed, seemingly chaotic… but still beautiful.

      • Not an Autism Mom

        Thank you for the reblog. Untamed and chaotic is right! ❤

    • Special Needs Moms Support Network

      Shared on our facebook page, great job!

    • nefulkerson

      Thank you for sharing this perspective with people! I can’t begin to imagine how difficult and “jungle-like” your day to day is. You are a strong woman!

      • Not an Autism Mom

        It’s pure insanity! Luckily we all have a pretty good sense of humor. Thank you for reading. ❤

    • Heather Erickson

      So many times I have thought this same thing. It also reminds me of the time my husband was drinking from a coffee cup that had the poem “What Cancer can’t-Do,” on it. He said, “What a load of crap. Cancer CAN do all of these things.” Then he proceeded to list just how. Platitudes sound nice but don’t hold up in the light of reality. Thanks for a great post!

    • Christen

      This is so beautiful!!

    • Helen

      Beautiful and accurate. I too loved the Holland poem but it’s at a greeting card level for describing autism. This piece is so relatable and I can honestly say the closest anyone has ever come to describing our experience. It truly is a jungle. Thank you and please keep sharing. You have a gift.

      • Not an Autism Mom

        Thank you for your kind words. And thank you for reading. ❤

    • Anonymous

      Guess I’m going to be flamed, but I really felt like bringing my two cents; just remember that it’s just about my own experience I’m talking about, and everyone (with or without ASD) is different. In my house, ASD doesn’t feel like a trip to the jungle. It feels like I planned for Italy while constantly dreading to land in Holland (in clear, there is a history of ASD in my husband’s family and I was really, really scared our child would end up having ASD too). We did land in Holland after all, and it turns out that Holland is nothing like the cold and rainy and dreary country I imagined it to be. My autistic son is very affectionate, he has a great sense of humor and a wonderful imagination (three things I always believed autistic people can’t have); he really has a knack for asking the questions that matter and for coming up with the most expressive phrases. While Holland is sometimes challenging (among numerous other things, they don’t sleep much in this country, and they won’t ever take no for an answer), it’s often very beautiful. I just felt like saying that, in case someone whose kid has just been diagnosed lands here and feels weighed down. Now fire away (shrugs).

      • Not an Autism Mom

        No bashing here! Everyone’s experience is different. My little one is the sweetest boy ever. This wasn’t an article to complain, but to vent. Thank you for reading… And for your comment. ❤

    • francescheda

      So inspiring. That “welcome to Holland” piece was given to me by our SLP during our beginning steps in early intervention. Love your thoughts on this!! And I totally agree! ♥️

    • peterblakerblog

      I was shown the ‘welcome to Holland’ poem many years ago on a teacher training course. I remember wondering at the time what it was actually meant to mean, as it did seem to belittle the life experiences of families coping with children who can present incredible challenges. In the end I decided that, for me, it was a good poem simply because it did make me think, despite the fact I still have no answers. Love and good luck to you and your family!

    • […] no one plans the exact same trip or finds the same difficulties along the way. It’s just like Not An Autism Mom reminded me with her awesome post  Autism is Nothing Like Going to Holland. I think she and I […]

    • […] sorry you will feel alone sometimes, because you think nobody understands what you’re going […]

    • Kirsty

      Emily Pearl Kingsley wrote Welcome to Holland about her son with Down Syndrome. He didn’t have Autisum, and while the poem has been popular with all special need families to convey how it feels to being up a child with a disability it was never meant to depict how it feels to raise a child with autism. I have a child with Down Syndrome and I can honestly say the poem is a good fit, for how I feel about my son Joey and how it feels raising him and being his mum. I don’t think it’s fair to pick apart a poem that wasn’t really meant for you.

      • Not an Autism Mom

        Thanks for your comment, Kristy. Have a wonderful day. ❤

    • Lisa

      Sounds like you described parenting in general! It full of ups, downs, twists and turns….. no one is really ever prepared and other more experienced moms help guide us to be great moms we need to be. Whether a mentally challenged child or a strong willed child, parenting isn’t for sissys!

      • Not an Autism Mom

        That’s exactly right. Parenting is a demanding job, no matter what. Thank you for reading. ❤

    • runningafterdark

      I don’t know when you wrote this but I’ve stumbled across it so thank you. I needed to read this today. It’s been a couple of weeks filled with phone calls from teachers and the principal, getting the medication all wrong and yes, losing a lot of sleep. Last week my son cried and told me that the word he hears most in his life is “stop.” I kept him home from school the next day and we rode our bikes for 6 miles. Certainly not every day is easy, but some are easier than others. And then sometimes, you have a great day. And I know we’ll both remember those forever. ❤️

      • Not an Autism Mom

        Thank you for your wonderful comment. ❤ I wrote this article about a year ago… It was a very loud day and night in my house.

        I’m sorry you and you’re little one have been having a rough patch. But I’m happy you planned an escape. That bike ride sounds perfect!

        I’d love for you to follow my Facebook page so we can keep in touch. ❤

    • Dmkonicki

      Wow, this hit home to me, it’s been almost a year and we are still in that jungle. I myself received multiple copies of this beautiful poem. Your take on it is so spot on.

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