My final blog post of 2015 wasn’t going to be any kind of happy ending. I was not in a great mood regarding Dar and autism as last weekend ended. We had given him his first White Christmas, up in Lake Tahoe, and yet…let’s say everything wasn’t hunky-dory. But then something changed.
My wife and I are very close to another couple raising a child whose age and autism severity level are both comparable to Dar’s. They’re stunned and impressed that we take vacations as often as we do. We reply it’s the only way to preserve our sanity, and we don’t want Dar to prevent us from living our dreams, and the change of scenery is probably salutary for him.
Sunday night, I wanted to eat those words. In the old days, Dar would wake up screaming at 3am, 4, 5, who knew. For many months now, we’ve been Benadryling Dar to sleep. Around 7pm, I ask my wife “is it Ben o’clock yet?” This is around the time that we “Ben” Dar. And normally, he falls asleep around an hour later. Normally, it’s good for him, because he gets the 10+ hours he needs, and we get the 7+ hours that we need to be good parents. Normally, it works.
Our one night at Harrah’s in South Lake Tahoe wasn’t normal. Dar didn’t fall asleep with the Ben. This kept his brother up longer as well, who finally drifted off around 9:30. We often find that Dar is in a better mood when his brother is no longer around to distract us (for whatever reason). This was the opposite of that. Dar began screaming and screaming like a kettle on the boil. No way to stop him, no way to know if he’ll wake up his brother, no way to know how many hotel guests were being disturbed.
10:00 rolled around, so wifey and I decided to just go to sleep. We turned off most of the lights except for a nightlight. Dar kept screaming. Lying in the bed, my earplugs doing no kind of job, I was having terrible, horrible, vituperative thoughts. Some of the least of them are similar, perhaps to your average Clark Griswold rant: “I take you all this way and you show no appreciation. Why do I bother? What are you or I getting out of this?” Others are more like: “Why does each scream raise my stress level? Why can’t I hear him the way that New Yorkers hear car horns at night, just part of the background? Is it because each scream is not only a reminder of his handicap, of the irony of his complete lack of communication, but also somehow a striking ingratitude?” And: “Why can’t we just put him in a soundproof booth? Or with some kind of astronaut-like soundproof helmet? Is that really so cruel and unusual?”
Dar eventually fell asleep. And then, so did we. He was first up, at 6:30am or so, tee-tee-teeing merrily as though nothing had ever happened.
At that point, I began planning perhaps the bitterest blog post I’ve yet written. And you, loyal reader: you know that’s saying something.
Then something weird happened. I won’t quite call it the Grinch hearing the Whos singing in Whoville, but it was close enough for my world.
We went sledding in the thick just-fallen snow. More specifically, wifey and I paid for an hour’s rental of a huge inner tube and a couple of slopes made for easy, kid-friendly riding. Dar and I went first. When we got to the bottom, he seemed…uh, okay. Then he defiantly placed his bottom on the tube…uh, at the bottom of the hill. I’m like, “Dar, we have to get to the top to ride again.” He didn’t want to move, so I just shoved him into the middle of the tube (the bottom is sealed shut by sewn rubber) and dragged him up the hill. He was happy. Then we did the hill again. And again. So what if he – and the snowfall, and his never-ending situation – were a little heavy?
Then I decided that his brother needed a turn. We only rented the one tube. Dar freaked out. I mean five-alarm fire style, get all the 300 nearby people staring style. And yet, for once, I could feel my stress level NOT rising. Because Dar was – little drummer boy drum roll please – communicating. He was telling us he did NOT want something taken away from him, not even for a second. He was telling us that this vacation had not been a complete waste. I smiled. I rode his brother down the hill; he hated it (and said so, as is his wont); I picked up screaming Dar from his mom; Dar calmed as we did a few more rides.
Dar eventually got tired of inner-tubing, walked over to the same open field’s horse-drawn sleighs. We had taken one the day before. No idea, then, if Dar had liked it; true he hadn’t screamed on it, but it was possibly he’d barely tolerated it. Now he insisted on getting on. Well, our trip had cost three figures, so no, Dar, you can’t just jump on one again. I steered him away from the sleighs; he screamed.
Then: another Christmas milagrito, by which I mean a little almost-miracle. The owner of the horse-drawn sleighs (there were at least five of them, coming and going,) sat alone in a parked one and insisted that Dar join her. She had remembered Dar from the day before. She asked him things. I said, “uh, he can’t talk.” She said in a calm voice, “I figured.” She gave me a certain look, which prompted me to say, “yeah, he’s never spoken.” I could almost predict her next words, because this kind of thing has happened so often, and yes she said them: “My nephew is the same way.”
But then, as Dar stood there on the empty sleigh with the woman, something happened that Gollum (me) did not expect. She said, “You know Native Americans celebrate people like him. They believe their spiritual connection to nature is stronger than theirs.” Part of me wanted to roll my eyes and ask “Which Native Americans?” but I suddenly sensed in her voice and manner that she was Native American, and that question didn’t seem appropriate. Instead I probably mumbled “That’s wonderful.”
Dar stood there with her in the rumbleseat for minutes, his brother joined him for minutes, all this time that the woman could have been renting the sled to others. Sure, maybe the horses needed to eat, maybe the driver was taking a break, but considering she was running a business, her sense of place and time and chi was astonishing.
Sounds like the most ridiculous, Jim Morrisony thing as I type it, doesn’t it? White men encounter indigenous soothsayer, walk away feeling uniquely blessed? Part of you wants to roll your eyes, right?
Finally we had to go, and the woman said to me almost in a whisper, “He’ll find his place.” She hugged him, kissed his forehead, said to him, “You’ll find your place.”
Dar and I and wifey and R walked away slowly, our close-together snowy footprints making testament to our pace, our daze, our revenant.
Happy New Year, everyone.