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.
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.
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.
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.
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.
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. 😉
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.
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.
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. ❤