Thursday, November 20, 2014

The Fourth of July

On the 4th of July this year, Conor rode his bike quite slowly in the neighborhood parade along with the toddlers and their wagons, their dogs, and their moms. He ate a red, white, and blue popsicle, and--towering over the younger kids--danced and jumped in the water shower emanating from the firetruck that parked at the end of the street.

And then he drank water from a cup he found on the street, dipping it into a pothole by the front passenger-side tire of the red-white-and-gold firetruck, lifting it to his lips, and gulping.

Yeah, that's what I said. On the Fourth of July, Conor drank water from a pothole in the road, using a clear, plastic cup he found on the street.

I learned this from his aid, Paisley, who accompanied me on the outing. She told me as we walked Conor and his bike down the alley to our house, the two of them soaked through from the firetruck shower.

(It's a fire pump truck, right? Is that the technical term? No matter, I suppose.) I was relatively dry, having stood by a tree with our bikes a short distance away. I justified my dryness by telling myself that she was getting paid for her time, so it was ok that I was being a jerk, standing away from the jumble of jumping little kids and the water shower.

"I tried to get there to block him from doing it," she said a bit dejectedly. I could tell she felt badly. "But I couldn't get there fast enough." I just stared at her. "Shit," I said, my stomach sinking. She nodded.

I fell silent. What was there to say? Mutely, we put the bike back in the garage, walked Conor into the house, and I followed Conor up the stairs to his bedroom to change his sopping clothes. Paisley disappeared into the powder room to change as well. (This wasn't her first 4th of July with us, so she came prepared. Clearly, I've been a jerk before.)

After a few minutes, Conor--in dry t-shirt and shorts--threw the sopping clothes in the laundry basket, and I escorted him back downstairs so Paisley could help him with his lunch. Quietly, I took my husband aside and told him what Conor had done. That our 15 year-old had drank water from a pothole in the road, using a clear plastic cup he found on the street.

And then I trudged wearily back up the stairs. I sat on the edge of our king-sized bed, and I cried. Not the hot, tumultuous tears of pain and anger and frustration that I often emit after one of my son's amazing tantrums. No, these were the quiet kind, just a few of them, really. I felt queasy.

You know, my son has so many skills. He's made great progress since he regressed. He's quite verbal (although still struggling conversationally). He's independent in the bathroom (yet he still struggles with that at times, too). He's an artist and a baker. He loves listening to music and bouncing a basketball, often at the same time. He's a keen observer of his environment, and he doesn't miss much even if you think he's not listening.

But still... but still, so disabled.

What is that, I wondered to myself as the tears plopped down on the back of my freckled, increasingly wizened hands. What makes him think--hey, there's a cup there, and here's a pool of water in the road, and I'm going to use this dirty cup to drink this dirty water?

What part of his brain thinks, WOW, what a great idea!?!

What is that?

Sure, he could be thirsty. I get that. But this is a kid who wouldn't drink bottled Deer Park spring water in the Sahara desert at high noon. No, not my kid. He hates water.

Cranberry juice, root beer, Crystal Light, lemonade--these are the things in his repertoire. He knows, he asks me for a drink all the time. All the time!

I'm thirsty, he might say, can we stop at the 7 Eleven on Falls Road?

I used to think that if I gave my son enough therapy, enough medical attention, enough typical peer interaction, enough community inclusion, he wouldn't do such inexplicable things anymore.

I guess not. It's not enough therapy, or maybe not the right things. I don't know. I suppose it doesn't matter what we do. It just is. You know, I'm not sure why this incident continues to bother me, nag at me. It makes me feel defeated, I guess. Beaten down.

This summer, on the Fourth of July, Conor drank water from a pothole in the road, using a clear, plastic cup he found on the street. What is that?