Tuesday, April 2, 2013

Forgetting the Score

"So, how would you like to proceed from here?" she asked as the appointment concluded. We were there at the developmental pediatrician for Ethan's third appointment since his initial diagnosis.

"We could meet on an as-needed basis, or next year, or however you would like," she continued.

I heard what she was saying without saying, following this rather run-of-the-mill meeting. There were no surprises, no sweeping exclamations about how well Ethan was doing.

The fact that she didn't really feel the need to see us back in a year spoke volumes, told me what I knew but still didn't quite want to acknowledge.

I saw what she was saying without saying, laid out in an email on my computer screen a few days later. I always tend to remember things after I meet and talk with people. I'd emailed a few questions about Ethan, his development, and his diagnosis.

I agree that 299.00 [an autism rather than PDD-NOS or Asperger's diagnosis] best captures Ethan, she wrote, although, as you say, he is certainly not on the severe end. I didn't re-administer the CARS2 or ADOS but I think that "mild" best captures him.

The first year Ethan had scored surprisingly high on the CARS (Childhood Autism Rating Scale) assessment. The next year his score had gone down considerably, and last year it had leveled off somewhere in the decidedly "mild" classic autism range.

But now, here we were, 3 1/2 years into this, and the doctor didn't feel the need to re-run the assessment.

What I can't so easily predict for, her message continued, is how he will respond to increasing social and communication challenges going forward, especially as things become less concrete and more conceptual.

You see, this is the thing, the thing about these meetings with the experts. You know in the back of your mind what they're going to say. You often agree with much of what they say. Yet, it still kind of hurts to hear them say it.

I knew why she didn't assess Ethan formally again -- because he's five now, and he is, in her opinion, about at the spot on the spectrum where he's going to set up camp and reside.

And while I know there is some truth in that, and I know most kids don't magically lose their diagnosis, something about that still seems wrong. He's five.

For most of the day after reading the email, I pondered and ruminated. I thought about the concern she expressed about the future, as the world around Ethan grows more abstract and conceptual. It's something Dan and I have discussed many times. The more I thought, the easier it became to pick up the burden of trying to solve everything and predict the future and make my son into someone he's not.

But while cleaning the tub of all things, I was struck by this. The simple thought. We love him where he's at. We have to love him where he's at.

The way God loves us. Thank God we are not approved of only when we're cleaned up, dusted off, made and molded into perfection. No. He meets us where we are. Thank God. Because I am so far from scoring the perfect score.

"Guess what we're learning NOW?" Ethan said as we drove away from school that afternoon. "We're learning about the letter 'D.'" He told me words that start with the letter, about drawing upper and lower case "D's". He gushed about doing a cartwheel in gym. He instructed me about handstands.

After dinner, I heard Dan and Ethan working together to build a simple wooden model of a school bus that he'd gotten for Easter. I listened. He wasn't being commanded to sit at the table. He was looking at the directions and helping Dan follow them; hammering nails with assistance. "Look!" he exclaimed proudly when they finished, holding up the bus for me to see. His eyes were bright.

You know, as I started writing this I had forgotten today -- April 2 -- is Autism Awareness Day. Some like to add Autism Acceptance Day to that as well.

Sometimes, I wonder if part of awareness and acceptance is to not just view people with autism through our typical eyes, to see progress as only them becoming "less autistic" and more like the rest of us. That can't be the only way we measure their accomplishments; their worth.

Sometimes, after assessments and appointments, I have to remember first and foremost: Is he happy? Does he feel loved?

Not -- what did he score or not score?

We have to work with them to give them the tools to get along in this world. Becoming more connected and engaged is a good thing. But the true gains, as with any of us, come when they are the ones choosing to connect and engage. A spark ignites and they decide, like Ethan, to sit and work on the bus; to share excitedly about school.

It's not progress when they are coerced and forced, molded into someone's else's ideas. Not when we work to fix. Not when our relationship, our interactions, aren't rooted and grounded in love.

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