How I Handled Life After My Son’s Autism Diagnosis. (Spoiler Alert: Not Great)

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Those first few months after Jackson's autism diagnosis were a whirlwind. Some days I wandered through the day a little foggy, yet, unwilling to tone down the hyper vigilance. Other days, I would cry after hearing a story about someone's pet passing away or a frustrating event with someone's family. Most days I just pretended that all was going to be fine. Just a slight delay. We all reach the finish line.

You know those moms who tell you, "Don't worry, every kid walks, talks, and poops on the potty. None of them go to college without mastering these things."

And we all laugh. We look at ourselves and realize we are placing a huge burden of struggle where there isn't one.

But...here's the thing....

Not all kids on the spectrum GO to college.

Not all kids on the spectrum master these basic skills.

Some never talk.
Some need help for years beyond what you plan for.

And that's really the struggle. The planning. Like it or not we really do dream up the future for our kids. We see ourselves or our kids in the stories we watch, the accomplishments we hear, and the stuff of our imaginations.

Normal is this strange goal no one wants - unless you have a child with special needs. Then, normal, becomes the most sought-after thing on the planet.

"Why won't he just TELL me when he has to poop?"
"Why does every single restaurant excursion have to be a battle?"
"Why can't this kid just act like a NORMAL kid?" 

It's depressing. It's isolating. It's easy to fall into the "why me" mentality.

That was what I was afraid of. I could see how easy it was to crawl into that place. That cozy and warm sadness, that place where I feel sad, I feel bad, I can't pick myself back up and others click their tongues and know we have it SO HARD.

But, truthfully? That pity only lasts so long. And in the end, it's more than likely not what anyone wants.

So I'm glossing over some of this emotional journey, (as I'm sure I'll be addressing more specifics as I continue to write about it), to bring you to a specific moment with a specific person.

When we learned about Jackson's confirmed diagnosis in July 2016, my husband and I made it our mission to be open, upfront, and public about it. We feel like it is absolutely nothing to be ashamed of (for us or for our son), and the more we shared the more we could help others who needed it.

Yeah, we were brand-spanking new to the whole experience but if we share what we are going through, maybe someone else who is afraid to take the first step to help their own child will actually take a leap of faith and get their kiddo some help.

We made a video and posted it on Facebook. We explained the diagnosis and our positivity and our expectation for good things. We highlighted Jackson's strengths and how we were going to help him grow and learn and be a contributing member of society.

We painted the positive picture.

And still I was screaming inside. Terrified. Horrified. And this is all knowing full-well what the diagnosis would be when walking into that doctor's office.

Once we made the video - we got flooded with information, comments, ideas, thoughts, "you got this" sentiments, and so forth.

It was amazing and, yet, felt incredibly overwhelming. Everyone was trying to "help" but I still felt totally alone. I answered every single message. I commented back. I thanked everyone like a good person. And I tried to wade through all the info.

But it just felt exhausting.

Then, a few months later, I was understudying a show. It was a lovely play with an equally lovely playwright whom I knew online but had never met in person. This theatre company really focuses on new works and championing the playwright so she was at many rehearsals and offering new pages and rewrites.

One day, during rehearsal, she reached over and touched my shoulder and told me she'd seen my video. She wanted to share more but we were interrupted. She told me later she would message me.

A few days later I got her message on Facebook. The bulk of my messaging had died down a few months prior so hers showed up like a beacon of light in a clear night sky rather than a tiny sapling in an evergreen forest.

Her message was simple:
"Are you familiar with Welcome To Holland? It really got me through some tough times."

And then she linked the essay. If you've never read it, here it is:

WELCOME TO 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.

I cried when I read it.

But not much.

Because I still felt like, "No...that's not me. That's not us. That's not really my kid. Just wait until he proves it. You just wait."

I thanked this lovely woman for reaching out. And I expected this to fall away into the far recesses of my brain as all the other pieces of information we were bombarded with early on finally did.

But I couldn't forget it. And I found myself revisiting this essay. Monthly. Then weekly. And I really had to take a long, hard look at what I was doing to my kid by denying who he is.

It would be like not accepting my child because he's left-handed. Autism is a part of who he is. It always will be.

Over the last year I know I've come to some greater acceptance. It's not the plan I dreamed up when he was in the womb or trying to crawl or giggling at the way we sneezed. And, now that he's almost 5, we are still navigating the "normal", while I'm still finding my own way into the daily joys. I'm happy to say I have found some positive ways to dive in with my kid, get on his level, and just breathe in a little bit more of Holland.

 

 

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