Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts

Friday, January 11, 2013

The E-Man Chronicles: Through The Looking Glass


Earlier this week, The Thinking Mom's Revolution published Backtime's guest blog "What Makes You Beautiful." It was not only a thrill to be considered a "thinking Mom" even for a day, but it was also a coming-out of sorts as an autism dad.

So I have submitted a follow-up. I hope they have me back on the TMR, but in the meantime here is a sneak preview on Backtime, Through The Looking Glass:


As the saying goes, “To know where you’re going, you have to know where you’ve been.” The past is prologue. History shapes perspective.

I remember E-Man when he was 2 ½ years old, still head-banging and incessantly slamming doors and drawers. He couldn’t talk, didn’t nap, and could barely feed himself. But we invested in aggressive intervention: speech therapy, occupational therapy, college students that spent one-on-one time with him, floortime tasks and drills, and lots of valuable time.

There were fights with insurance companies, lots of parental squabbles, money we’ll never recover, and time from our lives that had to be re-channeled with only incremental results.

Six years later, the progress is astounding. E-Man is doing great in school and he is an engaging and empathetic young man.

You never say you’re “out of the woods,” because just a few months ago he practically tore my shirt off at a pizza joint when I told him no video games until after dinner. But for every step back, there have been two-to-ten steps forward.

Anyway, I was sitting with E-Man last week as he was waiting for a haircut. He doesn’t handle waiting well, so I was trying to engage him on a bunch of subjects. Which is when I caught a glimpse of the future.

A couple of seats away sat a dark-haired pre-teen, a pimply-faced cute boy with black socks and sneakers, playing intently on his Nintendo DS. He didn’t even look up from his game and interrupted our conversation a number of times.

When we were talking about football:

“Football is much better than baseball, but if you play you might get post-concussion syndrome.”

When I was talking about my recent trip to Oklahoma:

“Nothing ever happens in West Virginia. You never see anything on the news about West Virginia.”

And when E-Man was whining about the previous haircut taking so long:

“Cosmetology is a very precise science. Sometimes it takes a long time.”

He was the Asperger’s kid from central casting. And most people wouldn’t get that because he looks so “normal.”

I interacted with him briefly, though it was hard not to be a little uncomfortable. I was now “someone else’s” parent, through the looking glass. I was somewhat put off by an older version of my E-Man, and questions raced through my mind about what steps his parents had taken.

The boy’s mom was there and didn’t react to anything. She didn’t redirect him or even acknowledge that he was speaking.  She didn’t even throw him a disarming, uncomfortable laugh.

You don’t want to speculate about someone else’s family dynamic, but at first I found the mom’s inaction troubling. We were always taught to constantly engage and have as much interaction as possible.

On the other hand, maybe she had intervened tens of thousands of times already, maybe she was having a bad day and just wanted to ignore him and have some peace at the hair salon.

And maybe she was just happy about how far he’d come, and was unconcerned what anyone else thought.

Wednesday, October 10, 2012

What Makes You Beautiful


One of the sites I've been advocating recently is The Thinking Moms' Revolution. It's a grassroots group that's picking up steam nationwide to "come out" in the battle against autism.

When I say "come out" I mean not only the sharing of information and the critical thinking necessary to take the fight to doctors, schools, insurance companies, and government. But it's also a forum for parents to "come out of the closet" and share the heart-breaking, complicated, and sometimes hilarious struggles in raising special needs children. 

As I consider myself to be a Thinking Mom, I decided to join the revolution with a recent story of my own. I opted for hilarious to break the ice. Look for "What Makes You Beautiful" to be posted to the website soon. The events of the below story took place about a month ago: 


I had always described the relationship between my 8-year old "E-Man" and 5-year old "C-Love" as 95% best friends, 5% mortal enemies.

But something happened in recent weeks that created a seismic shift in their universe: We stopped listening to Kids Place Live on XM in the car, in favor of the Disney channel.

It was sort of the end of innocence. There would be no more belly-laughs from Kenny Curtis and the crazy characters on The Animal Farm. Now Justin Bieber is touting himself as a boyfriend, and Carly Rae Jepsen is soliciting phone calls from strangers.

But both kids love the bubblegum pop, and there's no going back to the way it was. This was never more evident than the time One Direction's What Makes You Beautiful came on. If you haven't heard the song, it's extremely catchy - bordering on soul invasion.

And it was the subject of an EPIC lyric deconstruction on The Colbert Report. I dare you to watch the video and not laugh out loud.


But I digress. The point is E-Man knows every word and sings the whole thing. Whether you like his rendition isn't the point. He was diagnosed on the spectrum at 2, and wasn't speaking until he was almost 3, so every note is music to my ears no matter how repetitive it gets.

"You don't know you're beautiful! Oh-Oh! That's what makes you beautiful!"

Well, younger sister C-Love already knows she's beautiful (and talented, and funny, blah, blah, blah) and she's screaming for him to shut up so she can hear the real song. But he wouldn't stop, he couldn't stop, even if he wanted to. So she started lunging across the backseat, wildly hitting to try to get him to shut up.

This was further complicated by the exhaustion of a day at the pool, 95 degree weather, and that they were each holding ice cream cones. And as I often find myself, a single parent behind the wheel, I was powerless to stop any of it.

It's one of those situations that seemed impossibly frustrating at the time, but too funny in retrospect. Which I guess is the mission for the TMR website.

I followed up on my threat and turned the radio off. C-Love was outraged, which was exacerbated by E-Man's continued singing even though the music was off. He claimed the song was stuck in his head. Then as a determined 5-year old might do, she reached across and planted her ice cream cone on her older brother's neck.

I kept my lid from flipping for one minute until we pulled up at our destination, the Kroger parking lot. I used wipes to clean up the kids and I used the swim towels to clean up the car, all while trying to keep them separated. Cooler heads prevailed for about a second until we started walking toward the grocery store entrance.

"You don't know you're beautiful! Oh-Oh! That's what makes you beautiful!"

If I hadn't physically restrained C-Love at that moment, The CSI Unit would be poring over E-Man's chalk outline in the Kroger parking lot.

I should have known better. That was Rule #252, "never play harmonizing boy bands in the car after swimming on a hot summer day while headed to the grocery store with ice cream cones." Shame on me for not following my own rules.

The grocery run didn't happen. The kids were forced to listen to the baseball game in the car on the way home. So there.

You have to be flexible and abandon the plan sometimes. Life doesn't always take you in one direction.