It could have been my baby-brain, which lasted for the first five years of E’s life, but this is what I remember: At about four, he “saw” people, a few seconds or so before they came into view. It happened just three or four times one summer, enough for me to take note, puzzle over, then “forget.”
It happened once at an outdoor coffee shop, between his early intervention sessions. He woke from a snooze in his stroller, gazed at me with his long sleepy eyes, and babble-spoke about the man with a hat, then about the baby girl with her mom. The sidewalk was empty at the time. Momentarily, and as if on cue, a Hasidic Jewish gentleman sweating under his black furry hat rounded the corner, and jogger-mom pushing her ribbon-haired girl rolled by.
Then it was three years later, and we lived in the suburbs. With an autism play-therapy program in full-tilt, we thought we’d take take a break and travel some. We wanted cheap, cheesy and summery: the Jersey Shore!
The first night we planned to stay in a “cozy” room with bunk beds for just a song. Such a deal, we thought, and the building was yards away from the boardwalk!
Cozy it was: we could boil pasta while playing cards on the bottom bunk. Everything in the room. including the Led Zeppelin poster, was washed in a thin coat of ocean salt. As a beach-lover, this to me was one of the finer points of our accommodations.
The toilet had a lot to say, and made groaning and velching noises—-that’s right, velching, something like a belch, with an added whine. No big deal, we told each other. So it has some plumbing problems. (Yaw-yaw-yaw-gurgle-gurgle). It was only one night. We’d leave early next morning.
A little while before we had met Gail, a resident who told us about the building. It had been blown over and flooded from hurricane Sandy six years ago, and the rebuild was ongoing. It was so much better now, she said breathlessly, excitedly, convincingly: with hardwood floors, thick strong windows, and walk-in closets! I only hoped her place was bigger than ours. We met a few more residents who sat unhurriedly on the outside benches—also Ocean City veterans.
At midnight the toilet was singing again, except now it was groaning, burbling, velching, and flooding. Such excitement! This hadn’t happened since living in New York City. I almost missed it.
We called the owner. He was a man in stretchy white pants, tall black boots, crimson tailcoat, a musket and a plunger at his side. He was a part-time Civil War Reenactor, he said. I couldn’t not believe him. Then he squared his padded shoulders and told us how this rarely happened, how shocked he was, how he needed to be on the battlefield by dawn. That part of the story I couldn’t get behind.
Minutes later an indignant downstairs neighbor in pjs knocked on our door with the superintendent in tow. It was raining through his ceiling.
The Super spoke first “What happened?” he demanded. “How many times did you flush?” He wanted to know, “You gotta give it some time before you flush again. This is delicate stuff, these pipes.” After doing battle with plungers and a mop, they finally left. We were grateful to get to sleep.
But sleep came much later, and when it did it was a fall into shallow, murky water, thin mattress and all.
Not long after, a bright light appeared. It was mostly shapeless, and it hissed and wheezed as it rushed towards me. It made thirsty, sucking sounds, as if it had needed a drink for the past five years. I could make out a gaping mouth and holes where the eyes would be. When it reached the tip of my nose, I woke, gasping. At that moment a sleepy, small voice emerged from the top bunk, it was E: “Are there such things as ghosts?”
It’s 4:00 in the morning and we are trundling out the door, our only conscious plan is to GET OUT.
From the safety of a bright, spacious bed and breakfast three blocks away, I ask the kid what he saw back there. “A blue light,” he said from under a pile of covers. (What else? For how long? Did it make sounds?) But the sun was sneaking through the blinds, and we had forgotten to sleep.
He saw the air-sucking blob too. I’m sorry he did. But, selfishly, I like that he can see what I see, and probably much more.
I don’t remember much else from the trip, except for the retro-indoor amusement park. The main feature was a roller coaster held twelve feet in the air by creaky wooden latticework.
The boardwalk stores also seemed to be suspended in time—somewhere in the late ’90’s. It was as if the khaki baseball hats and sparkle-snow globes whispered comforting words: that nothing will change, that this Coney Island Affair will always be here, waiting for our return.
But nothing is permanent, and everything I own, including the body I’m in, is temporary. That goes for people too. I cannot “keep” a child, partner, or friend.
But what if you try to hold on anyway, and you get stuck holding onto someone or something? Whether you believe there is a person you simply cannot live without, or you become so entrenched in a feeling, such as anger, jealousy, or resentment, that you take a wrong turn or just freeze when it’s your Big Departure Date, like the soul stuck back there in the pipes?
I guess this is a fun, cautionary tale about hanging on.
But “letting go” is hard. It implies giving something up, and that could take a lot of work. How do you bring yourself to “give up” the idea that the uncontrollable can be controlled, for instance? To be able to let go, for just a minute. of the belief that if I work hard enough, long enough, and if I do all the right research, E’s autism will just go away, little by little, until one day, it disappears– *poof?*
Can the ego step aside long enough to allow unpleasant, limiting facts like disability, illness, and loss to sink in? A big part of me cries NO, No, and Noooooooo. There is always a solution, I say, there is always a way around or past, it is just a matter of getting information, plus endurance. With these skills I can make whatever needs to happen, happen, by God. It is exhausting.
Don’t get me wrong. I like to work hard. Seeing results feels good, even great. And sometimes it is hard to discern what can and cannot be changed. But most of the time, autism cannot be reversed…diminished, yes, skills developed to compensate for it–absolutely! But at its heart, it seems impossible to change certain neurological differences. At least for now.
In the meantime, there is life–and even happiness–in unexpected and goofy ways.
Especially when I can let go of my expectations.
*God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.*
It never gets old.
Photo credits: MD-Zahid-Hasan-Joy for Unsplash, Domenico-Daniele for Unsplash, Caleb-Brown for Unsplash