Autism’s Purple Sky

The teenage boy stood from his seat and climbed the steps to the stage.  

Dressed in khaki pants and a plaid shirt, he shook hands easily—with confidence. He stood tall. 

Watching him, my heart swelled with pride for who he is, and who he may become.

At the exact same moment, my mind flashed to another boy, sitting at home.

This boy is also tall.

When we’d left for the awards ceremony, he was making himself macaroni and cheese for dinner.

In halting tones, he explained “the plan” to watch his favorite show on television. 

He always has a plan.

He promised to lock the door behind us and call if he needed anything. 

This is the tale of two brothers—close in age, yet wildly far apart. 

One brother won the genetic lottery, while the other sits firmly on the autism bell curve.

One pitches for the school team. He gets Chipotle with friends. He has dark hair and an easy smile.

One goes to a special school. He doesn’t drive. He has no friends. 

Both are good and whole and right.

I have a child who does not fit the cultural norm or the academic structure or the expectations of society.

This boy Jack is not an athlete.

He did not make the honor roll.

He never ran for Student Council.

He didn’t take the SAT or go to the prom. He may never have the chance accept an award onstage.

In a culture determined to divide between spectators and stars, where does he land?

The boy who cannot whisper but bakes chocolate cake from scratch?

The boy who cannot comprehend the idea of a mortgage, or a lease, or a loan for a car?

Kids like Jack are often judged by their mistakes. They are viewed through the lens of their worst moments. There are precious few chances to celebrate his milestones, simply because they are milestones most take for granted.  

I used to think success meant following a certain trajectory: high school, college, career, marriage, family.

But I have this boy now and his dreams are like so many twinkling lights scattered across a purple sky. They are elusive and luminous and bright and difficult. He cannot quite hold them in the palm of his hand. 

But they are real to him.

He wants to take a course in broadcasting.

He wants to learn how to use an immersion blender.

He doesn’t dream of wealth, or status, or accomplishment. 

He wants to live an ordinary life. 

He is whole, and right, and good.

I know this, but I cannot seem to shake the idea that the world does not quite grasp it. 

How do we make room for every learner, dreamer, planner, student?

I mean, we have awards for the Most Valuable Player and good sportsmanship.

We give out trophies the size of swans for spelling bees, honor society, most improved, highest batting average.

What about him?  I want to ask.

Where is his award for simply walking out the door in the face of crushing anxiety?

Where is the trophy for managing his own medication, and learning to turn the stove off, and wearing a shirt with a tag?

What about us? I want to shout.

What about those of us who raise the quirky, the complicated, the misunderstood, the unseen?

We did everything that was asked.

We went to the meetings. 

We sat in uncomfortable chairs and listened to reports and compromised about inclusion. 

We raced to speech therapy the way other families race to soccer fields.

We broke and we healed and we broke again. 

We celebrated the small steps forward while our peers sprinted into the stratosphere of driver’s ed and diplomas and tuxedos on wide green lawns.

We have lived parenthood one moment at a time—searching for the meaning and the purpose and the future of a diagnosed child.

We are as committed to our joy as we are our fear.

We are table-builders, seat-makers, ceiling-reachers.

I root for him. I do. I’ve simply learned to root for different things. 

I root for exactly who he is, and the person he may become.

The thing is, he is more than a statistic. He is a story.

He is a bigger than a diagnosis. He is a discovery. 

For me, for now, this is the tale of two brothers who will live a life of wonder, and delight, and joy—each in their own way.

After all, a life lived differently is not a life less lived.

Every once while, the line between spectator and star blurs.

Jack, this cake is amazing.

Yes. For I made it. For you. For your award.