People say I tell a good story. I don’t know whether that’s true or not, but raising a child with autism certainly provides a lot of material.
The story lately concerns Daniel’s obsession with beverages: his, mine, yours — anyone’s. Even the old lady’s at McDonald’s.
It began over a year ago with him snatching staff members’ sodas, at school and in his group home, and gulping them down as fast as possible.
Now any drink is fair game. His beverage swiping has increased so dramatically that we can no longer take him to restaurants or even Starbucks, where, along with his lemon cake, Daniel will help himself to the coffee, latte or Frappuccino of any hapless patron in his path.
The last time I took him inside a McDonald’s was nine months ago, during a Sunday lunchtime.
We finished eating, and Daniel took our trays to the trash as usual, then suddenly bolted toward a family seated a few yards away. Targeting the youngest child, a boy about six or seven, Daniel grabbed the cup from the kid’s hand and raised the straw to his mouth.
Horrified, I heard the boy’s father’s startled protest — “Hey, hey!” — as I struggled to retrieve the cup, which six-foot Daniel held high out of reach. He polished the drink off in seconds. Mission accomplished, he relinquished the cup as I grabbed him by the arm.
“I’m so sorry,” I said, turning to the stunned family behind me. “My son is autistic, and doesn’t always behave the way I’d like him to. I’ll get you another drink.”
The father, grasping the situation, told me not to worry, it was fine, no problem — all the kind, understanding words most people use when encountering the unusual behavior of a disabled person.
His compassion did little to soothe my own upset, though. Dragging Daniel by the arm, I returned to the counter. “I need another drink this size,” I told the clerk, holding up the boy’s cup and pulling two dollars from my wallet, keeping a grip on Daniel with the crook of my arm.
The clerk looked at me blankly, as though a soda had never before been ordered in the history of her McDonald’s employment.
“I need a drink this size,” I repeated urgently, holding the money across the counter. She just stared at me with her mouth open, finally pulling a fresh cup from the stack behind her, then shaking her head when I tried to pay. “I can’t take that,” she whispered, like I was offering her a bribe.
“Well, all right,” I replied, beyond caring whether I paid or not. I grabbed the cup and pulled Daniel back to the victimized family. The father tried to refuse the cup, but acquiesced when he saw my distress. Apologizing profusely, I hustled Daniel toward the door.
But the party wasn’t over quite yet.
Nearing the exit, Daniel abruptly wrenched free, darting to a table occupied by a tiny, white-haired woman in her nineties, and what appeared to be her daughter, herself at least 75. In a flash, he grabbed the older lady’s soda and bolted toward the bathrooms, guzzling the drink as he ran.
“He cannot be allowed to do that!” the daughter called stridently across the restaurant, over my own admonishments in Daniel’s direction. “He cannot be allowed to do that!”
Desperate now, I called to the woman as I rushed past, “I’m sorry, he has autism — ”
“Yes, I realize that,” she called after me. “But he cannot be allowed to get away with that!”
Neighboring customers cast wary glances our way as I snatched the now-empty cup from Daniel’s hand and turned back to his latest casualties.
“I’ll get you another drink,” I told the woman, “after I get him in the car.” Before she could respond I dragged Daniel out the door and into the backseat of my Jeep, rebuking him incoherently across the parking lot. “You stay right here, do you understand me?” I hit the lock on my key fob and ran back inside.
Still clutching the original two dollars, I approached the women’s table, where the daughter had, apparently, undergone a change of heart.
“It’s ok,” she said indulgently, waving off the money I offered. “It’s ok. It’s ok.”
But I’d passed my stress threshold by then.
“It’s not ok!” I cried, verging on hysteria. I tossed the money on the table in front of her. “It’s not ok! It’s never going to be ok, so please, stop saying that word!”
Telling the story in the weeks to come, I was able to laugh along with my audience at the whole preposterous scenario. It was a relief to laugh about it, after the fact.
But that incident underscored how parenting this child, how living for years through these events, has shaped my attitude and behavior, just as autism shapes Daniel’s.
I was telling a family member about my ordeal a few days after it happened, still shaken, mourning my son’s ever-shrinking world, and the disability that had robbed us of sharing even a meal together at McDonald’s.
She was already chuckling as I reached the epilogue: driving from the restaurant, disgraced; me sobbing in hopeless futility while Daniel, already focused on his next request, asked repeatedly for Starbucks. I’m ashamed to admit how I screamed at him, again and again, as we drove back to his group home, another visit ruined by this hideous, inscrutable disorder, and my dismal collapse under its strain.
“It’s actually not that funny,” I said, annoyed by her failure to see the larger, more devastating picture. “This is a pretty big problem for us right now.”
“Well, I’m sorry, Kristen,” she told me, giggling. “But I just have to laugh at that one.”
I said nothing more. But that family member topped my shit list for months to come.
And that is my problem.
All my friends in the special-needs community have experienced these episodes, multiple times, surviving them only by recognizing and rolling with their absurdity. Better to laugh than to cry, right?
There are times when I can’t laugh, though, when the ramifications of Daniel’s behaviors outweigh their hilarity, when idiosyncrasies we once found quaint now impinge so dramatically on his chance to live even the semblance of a normal life.
But is it reasonable to expect those who aren’t living this to truly understand, to intuit the difference between a “funny” ordeal, and that one, final episode that breaks me? Do I have the right to dictate their reactions, when they are patient enough to listen at all, to commiserate with the difficult parts of my life that have no real bearing on their own?
This is my worry to struggle through, as best I can, while the rest of the world struggles through their own. Months of resentment later, I recognize that it is my problem, my failing, to ask those around me to view my experience through a lens that is mine alone.
I suppose it is better just to laugh.
But only when I say so.