Our Perception Problem

Two years ago this week I was staying in a hotel outside of Washington DC with my mother (heretofore known as Bubbe, the Yiddish word for grandmother,) my husband and Milo. We were there to watch my daughter compete in the World Jumprope Championships. (Yes, jump rope. Double Dutch, single rope, power, multiples, rope manipulation. . . .more about this freaky subculture later. It’s gonna be a long summer. . .)

It was stupid hot in DC. Every morning we rode the Metro to George Washington University for the competition. My mother, a one woman support team and personal pit crew for my daughter, was stationed in the arena. She knit, she drank coffee and she cheered. My husband and I alternated sitting and cheering with my mother, and squiring Milo in and out of as much free air conditioning as we could find.

The National Mall is a bonanza of cool stuff for kids. And most of it is indeed free. But it’s mobbed in the summer. I mean Dr. Zhivago-get the-hell-out-of-Russia mobbed. And Milo doesn’t do so well with mobs. (You’re thinking, frankly, who does? And you’re right. If I acknowledged every time I thought Milo’s limitations made him wise rather than crazy, I’d be reaching for the lithium myself.)

So,  I took him to the Spy Museum because that costs money and weeds out the prudent parents with less spoiled children. And we also managed a de facto ice cream parlor tour of the district.

Toward the end of the visit my mother and I took Milo out of the arena and were headed for a museum when Milo announced that he didn’t want to see another museum, he wanted to see the steepest Metro escalator I knew of. So we went to DuPont Circle and exited the Metro. And WOWY, there’s a Ben & Jerry’s at the top, so. . . success. Milo’s happy, Bubbe is happy, I am hot and tired but happy enough.

We head back to the Metro to return to our hotel. Bubbe’s Metrocard is tapped out and she fumbles with the reloading machine. Milo hears a train coming and is antsy to get through the turnstiles and onto the platform in time to catch this particular train. But I don’t want to be separated from my mother, so I make him wait. He starts to boil. He is certain that we need to board THAT PARTICULAR TRAIN. THAT ONE!!!  NOW!!

Bubbe gets through the entry process but not in time for that train. Milo is mad. He starts to stomp and raise his voice when another train arrives. We get on it. But Milo is now at 11. He is screeching and thrashing and spitting, literally spitting, mad. I wrap my arms around him in the therapeutic hold that I have been taught and move him into a corner at the far end of the train. People stare. I am crouched behind Milo and he is slamming his head into my chest. The thud resonates throughout the train. He is clawing at the back of my hands with his ragged fingernails. In his demon child voice he is wailing, “Let Go! Let Go! Let Go!” People are visibly disturbed. My mother asks, “What do we do now?”

“Get off the train.”

“Where?”

“At the next stop.”

“What is the next stop?”

“Who the fuck knows. Just. Get. Off.”

The train stops, the doors open. People rush off and away from us. My mom gets off, I carry the hysterical Milo off the train. Luckily, we were on the very first car. No one is around. It is cool and dark. We sit together on a stone bench. But Milo is still screaming, “Let Go! Let Go! Let Go!”  The curved underground Metro station is an echo chamber and his terrified cries ring out across the platform.

Two policemen approach us. “M’am, is that your child?”

“Yes, he’s mine.”

“Is he okay?”

“Well. . . .”

Bubbe jumps up and motions the policemen to follow her. And they do. This is not unusual. My mother is a force. People have been following her for years.

Milo is starting to tire out.  My mother and the policemen are standing nearby in the shadows. I can see her gesticulating. One cop nods his head.  The three of them return and the taller cop says to Milo, “Son, are you hurt? Has anyone hurt you?” Milo buries his head in my stomach and clings to me. It’s such a surprising response that I lean over and cover him with my whole body. He is crying, I am stone faced. The cops give my mother a knowing look and walk away.

We sit on the bench for a while as Milo calms all the way down. He is exhausted. He closes his eyes and drifts off with his head in my lap. But only for a minute. When he opens his eyes again he says, in a sweet, recognizable voice, “Okay Mommy, let’s go back to the hotel.” He stands up and walks ahead.

I turn and take my mother’s hand.

“Wow, mom, we had the cops all over us, and we weren’t even at a proper protest.”

She laughs. And asks, “What do you think happens to kids like Milo who don’t have parents with your emotional and, well, financial resources?”

“I think they get beat.”

I have thought that my life would be easier if Milo were in a wheelchair. Or blind. Or deaf. His life would be differently hard, but mine would be considerably far less self conscious. Physically disabled children inspire immediate compassion. They wear their vulnerability openly and innocently.  Milo’s illness is hard to spot as illness. It looks like bad behavior. It looks like the result of inconsistent parenting. Sometimes it looks like the result of abusive parenting.  And all too often it acquaints me with the police.

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4 thoughts on “Our Perception Problem

  1. DC in the summer could make anyone feel insane.
    You did what you knew to do – what you needed to do. And damn what anyone else thinks. The police managed to understand (thank goodness for actually perceptive cops), and your son got what he needed to grind through his moment. That’s all anyone could ask.

  2. Thank you for writing this blog. I am bipolar, have likely been so since at least Milo’s age, and while mercifully I have never been as afflicted as Milo is, I have had my moments. This blog gives me something to relate to, both as the adult I am now, and the troubled child I was then. And thanks for the reminder that I have people in my life who will love me not matter what.

  3. Being “consistently self-conscious” is an apt description for those of us with physically and cognitively disabled children as well. I have been so for more than eighteen years.

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