Monday, July 11, 2011

pondering perseverance

This is the latest article I've written for Autism Asperger's Digest - it will be printed in the October issue, but I'm sharing it here early because, frankly, not may people read my blog :) If you are interested in learning about Autism/Asperger's, I highly recommend this periodical. I write "The Sweet Spot" column (parent's point of view) in each issue, but I find ALL the articles helpful/informative.

and with that, enjoy :)

Got Character?

It was unusually hot the morning our family participated in the Run Too Overcome 5K (an annual event that raises funds and awareness for the exceptional children’s departments of our local schools). My husband, our four children, and I had made an eager start, but we’d barely reached the 1K mark when Luke (our oldest, who has Asperger’s Syndrome) hit the wall. It wasn’t physical exhaustion; Luke has grown used to long hikes and bike rides with the family. But several factors combined to make this an especially intolerable experience. To begin with, it was Saturday morning - his day “off.” It was hot. And we were aimlessly (from his point of view) walking through town on roads meant for cars, in the middle of a great visual sea of people. This might have been tolerable, but there was no motivation, no purpose that had been well communicated to him. And so, with no end in sight, he lay down on the pavement and refused to move. In some ways, he was unable to move. He was done.

Over an hour later my husband and other three children, who had finished long before, stood with the crowd of people waiting at the finish line. Luke and I held hands as we made our way toward them, keeping a slow but steady pace. I can’t recall precisely what transpired in the interim, but at some point along the way Luke experienced a tipping point where he decided he could do this after all. And so, he did. I let go of his hand and jogged in, which made him the absolute last person to finish the event. He walked under the checkered flag, completely unimpressed by the cheers of the crowd, and – without the slightest pause- walked straight to the car.

A fun morning? Not exactly. But the point is, he did it.

Perseverance. The more I get to know people on the spectrum I’m convinced they know more of the true meaning of this word than do any of us. They endure so much we can’t even imagine. My son now tolerates many things that used to send him into a panic. Does that mean these things don’t bother him anymore? Not necessarily. Adults on the spectrum explain it's less accurate to say they are no longer sensitive to such stimuli; rather, they’ve learned to cope. I admire that so much!

I remember listening to Aspie Stephen Shore, a well-known writer and autism advocate, speak once. He explained the frustration of being "high functioning" because, as he put it, people tend to forget and assume you're “just like them.” Then, when you do have a problem of some sort, they become disappointed or annoyed. It is easy to forget that people on the spectrum expend a lot of mental energy tolerating a million different assaults upon their sensory systems and social boundaries. I’m starting to see this reality in Luke's life. He’s almost a teenager now. When he was in kindergarten it didn’t take a rocket scientist to notice, “Something is different with this one.” But now? Well, now it’s less obvious that he processes the world differently, which is what we all wanted for him. But in some ways that makes his life all that much harder.

I’m grateful there are people in Luke’s life who do “get it.” Surprisingly (or not?), those people have been his peers. I say “or not” because I’m coming to appreciate that when you take time to inform kids and answer their honest curiosities about autism, they most often respond with compassion, understanding, and tolerance. Last fall I’d had the pleasure of talking to Luke’s classmates the first week of school, to give them insight into the challenges Asperger's Syndrome presented for Luke. In the months that passed they came to appreciate Luke’s positive attitude and sense of humor, while also growing acutely aware of his quirks and challenges. He hadn’t had a perfect year. Some days were harder than others, like the morning he told his classroom teacher that he needed to talk to the principal. She allowed it, and so Luke walked in “like a man” (as the principal later described to me), cleared his throat and announced, “I want to be fired. I want you to fire me from school.” Of course it took everything in the principal’s power to keep a straight face and convince him, “I can’t fire you Luke, I need you here, man.” Luke sighed, thanked him for his time, and went back to class.

As the year came to a close the class was asked to vote for one student who would receive the character award for perseverance. They chose Luke! Then it was time to choose a grade-level representative from all the classroom winners. Again, they chose Luke. Finally the entire school had to choose one student who would represent them for the character trait of perseverance. They chose Luke!

Perseverance. Yes, he’d earned this honor.

Were we proud? I’m not ashamed to admit that we told everyone! No spelling-bee-winner’s parents could have been prouder. Academic achievements have their place, but perseverance is a character quality crucial to living a life of success and satisfaction. There is so much about this world full of people and noises and smells and changes and expectations that Luke is going to have to push through if he’s to stay engaged and find his way. Some days he will want to check out (don’t we all at times?). But when he feels that way he can look back to fifth grade and remember, “I wanted to check out then, too, but I didn’t, and my peers acknowledged that.” Oh yes, we are proud!

Now Luke has a T-shirt that says, “Got character? I do!” What’s fun for me (insert sarcasm here) is when he wears it out in public on those not-so-good days when he displays anything BUT good character. In those moments, that T-shirt is a good reminder for me to persevere. It reminds me to focus on what is true: that whatever difficult moment we're facing right now, such moments are becoming less and less frequent. It reminds me that this moment is likely the culmination of a million tiny frustrations to which I can't begin to relate. And sure, Luke will have to deal with the consequences of his choices, but the more important question is will I, his mom, his safe place, remember to “get it” and practice some perseverance of my own? Will I take deep, intentional breaths and walk through this difficult moment with my character intact, or will I check out - throwing my hands in the air and spewing hurtful words? If I’m to expect perseverance from him, I have to model it, myself. Needful reminders, indeed.

Luke recently had his fifth grade graduation. It was a surreal experience. I’d had so many concerns for the year, yet here we were: the last day. Fifth grade has had its ups (Luke became a regular superstar among the second graders for his “Stellaluna” performance) and its downs (he just had to know how the fire alarm worked!) But, as far as anyone knows, he didn’t climb on the roof of the school one time! When his name was called at graduation he walked across the stage, gave his teacher a high-five, and the entire fifth grade burst into applause. I was, of course, a blubbering mess of tears.

He’d done it. He persevered!

Yeah … he’s got character, all right.

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