The Story I Tell Instead of ‘Welcome to Holland’

All has gone quiet on the western front. This week has been drama-free. My oldest son is happy. He’s calm. He’s relaxed. So why am I not?

Perhaps it’s because this journey of parenting a child with autism is rather like riding a roller coaster. At this point we are on the up, but who knows what will happen when we turn that corner. It may be a huge and terrifying dip.

When the big lad was first diagnosed, a doctor told me not to look too far ahead and focus on what’s happening now. I listened to that advice, and looking back, nothing has worked out as I expected. It’s actually better than I ever imagined. The big lad has exceeded all of the doctor’s expectations, academically and socially.

I was right to ignore the doctor’s advice. I was right to believe he would make it in regular school. I was right that he could be bilingual. I was right to have high expectations. I only wish somebody had told me that then, but if they had, I probably wouldn’t have believed them.

When the big lad was diagnosed, several friends and colleagues shared Emily Perl Kingsley’s essay “Welcome to Holland” with me. She wrote this “to describe the experience of raising a child with a disability” and to help people “imagine how it would feel.”

Ironically, most people who sent this to me didn’t have children with special needs. I think it was a well-meaning attempt to empathize with how I was feeling, and perhaps they felt it had added significance since I live in Holland.

However, I was never comfortable with the hint of disappointment I believe is implied in Kingsley’s essay. I agree with Mama Dullock’s passionately written post at “Autism, or Something Like It.” It’s more about our expectations of parenthood, and it’s up to us to choose what we make of our experiences. I have tried to put into words what my experience of parenting a child with autism is like:

A Day Out at a Theme Park

You may have planned your trip in advance, or it could be a surprise day out. But either way, you eagerly anticipate the adventure you’re about to embark on.

Everybody rushes towards the popular rides, and the lines are enormous. Some people have fast passes and rush past you with smiling faces. As they embark, they enthusiastically tell you how great it was and dash off to the next roller coaster, leaving you behind.

You have a choice: keep waiting in line patiently, quickly follow the others or go to a shorter line.

Those of you who decide to wait will finally make it onto the main ride. It took a lot of patience and determination, but nevertheless, the experience was fantastic. But there’s also a nagging feeling that while waiting you may have missed out on something.

Those of you who followed the crowd made it onto some rides but missed others. And those of you who left the line went your own way, found some great new rides and had fun exploring and discovering new things. But some were left wondering what the big rides were really like.

At the end of the day, everyone left through the same exit, just at different times. Did you enjoy the day out? Well, that was up to you.

It hasn’t been a smooth ride. At times, it has been scary, and although I love roller coasters (I thrive on the adrenaline rush that I get from them), it is the fear of letting go and losing control that terrifies me. And permanently riding a roller coaster can be exhausting. For the control freak in me, the uncertainty of what’s around the next corner can be crippling.

However, becoming a parent doesn’t come with guarantees, and we need to accept our children for who they are and love them unconditionally. We need to trust that in the end we will all arrive at the place we need to be. One thing is for certain, I am going to make damn sure I enjoy the ride!

We all complain sometimes, and life comes up and bites us on the a**. But it bites us all, in different ways and at different times. Our experiences are unique, and it is how we choose to respond to them that defines us.

Time to let go, face the fear and embrace the unexpected!

Follow this journey on Diary of an Imperfect Mum.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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