Life is Amazingly Good

When I take a step back
away from the mess of my desk with the precarious pile of bills
away from the house with the leaky tub
away from the bosses who seem determined to make education meaningless
away from the fears of what this country is becoming

When I take a step back
and watch them together
walking together, arm in arm—

I’m reminded of asking dad one day, when I was old enough to have learned of the complete nightmare that was the year of 1968,
“What were you thinking bringing me into that world?” and his reply,
“Well, your mom worried about it, but I thought you’d be okay.”

When I take a step back,
I remember, and
I believe he was right.

I am okay.

In fact, I’m far better than that.
So, thanks for your calm self-assurance, dad.
And your belief in the future.

They’re walking together in your steps.

Be Human

Today, Woody lost his head. Literally.

Woody has been doing his Nearly Headless Nick impersonation for the last day or so, but today, he lost it altogether.

I had been trying to substitute another Woody for the past day; we have many of them in our house. But none of them were the right one. And Woody lost his head before we made it to the store.

And when he did, my boy’s heart snapped in two.

Every time he tried to put Woody’s head back on without success, the boy’s heart broke again.

But he kept trying.

And he handed Woody to me about halfway through the car wash, and through his tears he cried, “I need help, please.”

So I tried. But Woody was as broken as the boy and his daddy, sitting there in the car wash crying together.

When we got home, I took Woody inside for a moment while the boy cried in the car, and Crazy-Glued his head back on.

But the pain was still there. And so for the next hour and a half, we mourned Woody together. One of us, at the top of his lungs, hands to his head, crying out the pain of losing his friend.

Eventually, the tears dried, and the new Woody had arrived home, and the old Woody’s head seemed to be holding.

But the loss of a friend still breaks our hearts.

I mention this not so you’ll mourn with us, but feel free to do so if you want. That’s what the boy wanted today, after all.

I’m mentioning this rather so that I can help you to see that kids on the spectrum are not cold.

They are not dispassionate.

They are not heartless, and they are absolutely not loners.

Yes, there are times when human company is overwhelming for the boy. Hell, there are times when human company is overwhelming for his dad.

But when your friend loses his head, no matter who you are or where you are on the spectrum, you still want someone there who will try and help.

And if help isn’t possible, you still want someone there who will cry with you.

My son wanted me to share his loss.

Cause that’s what it means to be human.

When there’s a story circulating out there that kids on the spectrum are loners and thus dangerous, I hope you’ll remember this. What my boy wanted was someone to cry with him.

Now that Woody is better and new Woody has found a home where he’ll be loved, all my boy wants is someone who will play with him.

Cause that’s what it means to be human, too.

Dreaming Of Space and Acceptance

Dreaming Into Space And Acceptance

“O Me! O Life!”
By Walt Whitman

Oh me! Oh life! of the questions of these recurring,
Of the endless trains of the faithless, of cities fill’d with the foolish,
Of myself forever reproaching myself, (for who more foolish than I, and who more faithless?)
Of eyes that vainly crave the light, of the objects mean, of the struggle ever renew’d,
Of the poor results of all, of the plodding and sordid crowds I see around me,
Of the empty and useless years of the rest, with the rest me intertwined,
The question, O me! so sad, recurring—What good amid these, O me, O life?

Answer.

That you are here—that life exists and identity,
That the powerful play goes on, and you may contribute a verse.

Leaves of Grass (1892)

Even as a child, even before I knew the name of the town, Huntsville was a place of dreams and acceptance.

Believe it or not, I was a kind of a loner as a kid. Growing up in the Deep South, loving books more than football was a bit of a barrier that was difficult to climb over. I didn’t get the passion over a sport that was, when I played it at least, the punishment you survived so you could go home and read the latest Star Trek novel.

And that’s where Huntsville came into play. My mom and dad decided one Saturday morning when we were visiting my Nanny in Opelika that we would take the drive up to Huntsville to visit the Space and Rocket Center. Yes, we were mere inches from Toomer’s Corner, and I honestly didn’t know it existed. I loved going to Auburn though since the Auburn Mall had a Waldenbooks. Having grown up in a town that barely had a library, the tiny (by today’s standards) Waldenbooks could absorb me all day for every day of our visits.

And so I prepared over the three hour drive to Huntsville by re-reading Arthur C. Clarke’s 2001: A Space Odyssey.

I wanted to go into space.

Space, for me, represented a place of dreams, a place where people worked together toward a common goal. A place where everyone’s skill set was crucial because usually you were one of a extremely small crew, and survival depended on being able to work together.

Space embodied the dream of being worthwhile, which was something I struggled with as a kid who didn’t fit in.

And in Huntsville, I was able to climb into the capsule that had taken people up there. I’m certain that the Mercury Capsule in Huntsville that I kept running to the back of the line to climb into again and again was just a mock-up, but it really did not matter. When I was reclined in the seat, I was in space.

And all was right.

Today, the boy climbed into that capsule. And all was right.

I didn’t prompt him; he wanted to. And then he, and Woody, flipped over, put his feet up in the air, closed his eyes, and dreamed.

I don’t know what he dreamed about. My boy, as a result of his being on the Autism Spectrum, doesn’t talk much. He doesn’t share his dreams with me often. But he did specifically, and repeatedly request this week, to go to “The US Space and Rocket Center to see the rockets, please.” So to see the rockets we went. Because when my boy goes to the trouble of asking for something, we try and get it for him.

And while he didn’t tell me what his dreams were, kneeling there, thinking about just how amazing humanity is when we work together, I thought about some of my dreams for my boy.

Like most parents, I dreamed of all the wonders of this world that I would get to share with my boy. All the books he would love. All the Lego Space Ships we would build. All the movies we would see. All the footballs we would toss (yeah, I became a bit more normal as I grew up).

But then his diagnosis interfered. And I spent a long time being angry that autism was screwing up my plans.

Until something weird started happening. The boy and I went to movies, and he liked them. We would read books and enjoy them. We would play with our amazing Star Trek technology that I could only dream of as a kid together.

And he would reach over to take my hand while he was crying from laughing so hard at a movie scene he watched over and over, just as I used to do.

And I realized that life was far, far better than my dreams could have imagined.

While I was looking at him today, sitting in a seat that was at least quite similar to the one that I climbed into when I was basically his age, I realized that my dreams have changed.

I’m not as angry at autism as I once was. It hasn’t taken nearly as much as it has given.

And so while walking among monuments to what humanity can achieve when we work together, I realized that my primary dream today isn’t to rid the world of autism. Don’t get me wrong: if there were something we could give him to make communication easier for him, I would absolutely consider it.

But that isn’t the main thing I wish for today.

Instead, I wish to make our world a place where even the most severely autistic boy or girl is seen as a gift to humanity rather than a burden because of the wonderful gifts that they bring to our lives.

  • The gift to completely live in the moment even when that moment calls for going to the carwash on a rainy day.
  • The gift to dance alone in the grass.
  • The gift to unconsciously laugh harder at three words in a movie the 50th time you watch them than you did the first time cause sometimes things just get funnier.
  • The gift to empathize with complete strangers.
  • The gift to realize that a toy can be the best of friends.

We don’t need space to teach us that we absolutely need one another, and all our one anothers to survive. Our sordid lives are sufficient to that task.

While we may never find a cure for autism, we can change our world so that even those who cannot speak can contribute their verse to this powerful play.

Busted Routine: It Was Going To Be Bad

I knew it was going to be bad.

Just knew it.

Matthew wanted to go to the store. So we went to the store. It was getting late, but we went. It was the beginning of the routine, but it was happening out of order. We should have gone out to jump first. But we didn’t. It was going to be bad.

When we got home, Matthew wanted to jump outside. The routine was happening backwards, but I couldn’t stop it. Every attempt to redirect him toward something else just wasn’t happening. It was no use. He wanted to jump and no amount of iPad screen time would redirect.

(And yeah, I know. Let the boy jump, right? Exercise is FAR better than an iPad. Except, I knew what was coming next.)

So we jumped; even though it was after 8:00pm, we jumped.

And as I was helping him off, he asked for what I had feared in letting him jump: “Wanna go to the library?”

I hate being right.

“The library is closed, buddy.”

“THE LIBRARY IS CLOSED! NOOOOOOOOOO!!!!!”

“Yep, I’m sorry man.”

And so again, I tried to redirect. It didn’t work.

It was going to be bad.

Eventually, we drove to the library. So he could see.

It was going to be bad. The routine was FUBAR.

So we went to the library, and the library was closed.

“THE LIBRARY IS CLOSED! NOOOOOOOOOOOO!!!!!!”

We got out of the car, so he could see. But it didn’t help.

And it became bad.

After twice carrying him back to the car and eventually getting him buckled in, we drove home, screaming all the way.

It was bad.

You see, we struggle with self-injurous behavior. Without the words to express frustration, other outlets replace it. And slapping his head is his go to move for letting us know just how frustrated and hurt he is.

The slapping had started; I could hear it.

So I pulled over despite being less than a half a mile from home to restrain him.

Except when I looked in the mirror, I noticed that the slapping sound interspersed with the screams of protest over the library being closed, was NOT coming from him hitting himself on the head.

This time, despite being a truly bad one, this time, Matthew was slapping his hands together.

Rather than express his pent up frustration at the radical departure from his routine that the closed library was causing him, my son had redirected his anger, on his own, by slapping his hands together.

I was wrong.

It wasn’t bad at all.

It was one of the more amazing moments of growth my son, or anyone I’ve ever known, has ever shown.

Sometimes a busted routine opens a whole new world of awe and wonder. Thanks, little man, for the reminder that terrifying change is often an amazing thing.