Celebrating Ethan

Someone sent me the best article the other day. It had run in Ladies Home Journal, and was, I kid you not, an article called "Accepting Ethan," written by a mom who's son has autism. The article hit me and hit me hard. I read it three times. I saved it to read many more. In it the author talks about the search, back in the early days (her son is now 13) to make her son lose his diagnosis. The pushing, the struggles, the drills, the tears. Her son is a teenager now and not "cured," but she's learned that the best thing she's ever done for him was learn to accept him just as he is.

Certain parts of the article jumped out at me. This in particular: I don't ever look back and wish I'd done less when Ethan was younger, but I do wish I'd understood sooner the battle was not an all-or-nothing one. I wish I'd learned earlier to see and celebrate the small victories when they came instead of holding my breath for the bigger ones.

Ouch.

Last night in bed I kept thinking about the article, about how she recounted desperately trying to teach her son the basics of pretend play, immersing him with flash cards to develop language, setting goals and writing lists. And always, when he reached a goal, there was a but. Sure, he can do this, but what about this? Always the next milestone. Always a carrot dangling out in front.

I saw me. I didn't like seeing me.

At about 2:30am I realized I was wide awake. So I got up, went downstairs, and before I knew it, started to cry. Just a few hours before I had peeked in on the kids and thought about how quickly they grow...how the moments, the years just zoom by. And as I lay downstairs on the couch in the middle of the night with tears streaming down my face, I was seeing how so much of Ethan's little life had been overshadowed by my fears, by the way I saw first everything he wasn't doing, or did late, or didn't do in the typical way.

The fear was always there, like a whisper. Like a cloud. And so when he wasn't smiling yet, I worried. And when he smiled late, I worried. When he grasped things early, I was happy...not so much because of what he had learned but rather because it assuaged my fears. I took him to the doctor when he was five months old, worried because one foot turned out. I drove away from Target after a photo appointment crying because the guy could not get him to smile. At age one I wondered why he seemed so "out of it" compared to Anna at her first birthday. I celebrated his first words briefly and then fretted because they were all objects rather than people. I kept wondering, thinking, brooding, and all the while, I was missing. Missing adorable baby giggles. Missing the simple pleasure that comes from smelling baby shampoo and lotion on softer than soft baby skin. Missing his perfect smallness.

Then, after getting his diagnosis, the gnawing fear was replaced by a gnawing urge to do something, anything, everything, to try to make him better. Try to fix him without technically thinking the word "fix." Always thinking of the next thing we could try, the next achievement, the next milestone to reach. Always remembering where other kids were in their development and where he should be. And so, instead of the sheer joy that could have come from realizing his vocabulary had blossomed from about 30 words than more than 200 in just a few months, I settled on the fact that he was so good at labeling or requesting but not so great at communicating. And while Ethan has figured out his shapes, knows some letters and numbers, and is starting to learn his colors now, at just 2 1/2, I often shove those achievements aside because he needs to figure out pretend play. He needs to learn how to play with others. Whatever he's accomplishing, it's never quite enough.

At least, that's how I've felt, deep inside. Last night something changed. Last night I sat with regret and felt grateful that I could learn these lessons now, while Ethan is still a little one. After awhile I dried my tears and decided that I could, right there, relive all of the sweet and successful Ethan moments that had previously been overshadowed. So I closed my eyes and saw his gummy grin as he beamed up at me from his bouncer seat at eight weeks old, the day he decided to start really smiling in earnest. I saw his little self lying on the bed, kicking with joy as he grasped at a balloon that had drifted up on the ceiling over his head. I remembered how ticklish and giggly he was at the doctor, and saw him playing with his musical toys and banging his hands to rhythm (with Ethan, it's always been about the music), and the way his entire face lights up when he sees me, and how incredibly quickly he picks up a new skill, and him belting out "Fire truck, fire truck, I wanna ride on a fire truck!"

In my mind I celebrated with Ethan. I celebrated Ethan, without all of the conditions that had always been there. And somewhere in the middle of all that, I drifted off into a sweet and weightless sleep.