‘I told a woman at the gym my son got into college. She replied, ‘Don’t celebrate too openly, other families may still be waiting.’: Special needs mom explains importance of celebrating milestones, ‘Let us have this’

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“Hi. My name is Carrie. I am married to a man named Joe, and we have five kids. Our second child, Jack, is diagnosed with autism. He is sixteen years old.

We spend a lot of time working on open-ended questions with Jack: whowhatwherewhen, and why. 

Who is your favorite teacher? What would you like for dinner? Where did you put your glasses? When do you want to leave for the store? Why do you think Cardi B is the greatest singer of all time?

See, you can’t answer these kinds of questions with a simple yes or no. You have to provide a response. You have to show how much you understand concepts like context, and perspective.

When it comes my son’s diagnosis, I know the who, the what, the where, and the when.

Jack has autism. He has it in his brain and his heart and his soul and his body.

It is the result of a complicated mutation in genetics, and DNA. He will have it forever. But I don’t know the why.

I don’t know why he has it but my other kids don’t. I don’t know why he needs exactly six pillows to sleep at night.

I don’t know why I told a woman at the gym my oldest son Joseph got into college and she cautioned me to not celebrate too openly because other families may still be waiting for their good news.

I don’t know why I felt a flicker of rage so strong, I had to look down at my hands for a moment. Wait. Yes, I do.

For sixteen years now, I have openly celebrated milestones as they happened all around me, even as we longed to have them for ourselves.

The first word, followed by a sentence. A sleepover, a birthday party. A tux for the prom, a driver’s license, a chance to cross the long, long stage in a cap and gown. Babies, weddings, promotions, new houses, shiny cars.

When it comes to autism, milestones are a little like the brightly colored fireflies I chased as a kid.

You run in circles through the darkness, hoping to catch one, but you rarely do. They are fast, these fireflies. They blur your vision with their radiance. Yet you stare into their glow, wildly hoping for an answer.

What I am trying to say is, I have had to swallow my pride, and my heartache, more than once. Not once, but one thousand times, if I’m being honest. And so has he.

Still, we dig deep into our reservoir of grace, and we find a way to celebrate the color of others, even as our own days remain firmly in the landscape of black and white.

For sixteen years, I have sat back, and watched the world through autism’s eyes. It has been a world of loss, and hope, and discovery, and surprise.

We have held our breath for the smallest step forward, while we endured the backslide of progress common to the wily beast that is this spectrum disorder.

I have worn a brave face, even as my insides were crumpling. When it comes to autism, I constantly search for context, and perspective.

I guess you might say we are still waiting for our good news. But why?

Why must this boy travel through the rest of his life, trying with all of his might for the very things most take for granted? Because he does. And he will.

Like stretching your fingertips too close to a flame, some things aren’t worth considering. You’ll only walk away burned.

He just wants to drive. My son. He wants to sit behind the wheel of a car and drive himself to the grocery store and buy his favorite ice cream.

Is that really asking too much? Apparently, autism thinks it is.

And so we have learned to chase the firefly our own way. I guess you could say we’ve created our own milestones—a tentative hug, a small smile during dinner, powerful brotherly connection.

‘Joey. For you. Are going to college.’

‘Yes, buddy. I think I am.’

‘Nothing here. Will be the same. Without you.’

Let us have this. Please, let us find whatever bright yellow spots we can. We live amidst a colorless backdrop more than you know.

People are good. I believe this. I have to, you see. Otherwise I will spend the rest of my life storming off the treadmill.

Why does my son have autism? I don’t think there is a simple yes or no answer here. For me, the question will remain open-ended for the rest of time.

For now, I have the chance to know a person who is unlike any other person I have ever known.

A person who is complicated, and honest, and tenacious, and pure. This person, well, he changed who I thought I was. And who I planned to be.

He is a boy named Jack. And I love him fiercely.”

Courtesy of Carrie Carriello

This story was submitted to Love What Matters by Carrie Cariello. You can follow her journey on Facebook. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos. 

Read more from Carrie here:

‘You’re hired!’ His face lit up. My boy was smiling. He cannot read social cues and gets easily overwhelmed. He has no restaurant experience. But they gave him a chance.’: Mom thanks restaurant for hiring son with autism, ‘There are still good people’

‘He gave up visions of Little League for IEP meetings and speech therapy. He avoids the stares, holding his teenager’s hand, and his entire heart.’: Woman pens appreciation letter to Autism Dads

‘There are no shortcuts, no finish line. I root for the boy who never spoke, for exactly who you are, and the person you may become.’: Special needs mom shares journey with autism 

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