It should have been a good visit. My son had been asking for me all week — “Mah? Mah?” — and even had an outing in mind. “Pee-zah!” he’d declared, again and again. “Mah? Pee-zah?” It seemed he couldn’t wait to see me.
As soon as Daniel spotted me, though, I knew something was off. Rushing toward me demanding “pop,” he gestured to the soda dispensers near the front of the restaurant. His beverage obsession is nothing new, and extra soda is a treat he anticipates when I visit. It’s one of the few pleasures he asks of me, a modest joy I’ve willingly indulged through eight years of structured residential care.
His aide, Brittany, however, was telling him no.
“Uh-uh. No way,” she said firmly. “You’re having juice.” My heart sank, realizing he must have stolen a soda, coffee, or other random beverage that morning, and now had to pay the price. And I knew we’d pay the price with him. His conflict with his caregiver would infect our time together, too.
Daniel grasped my chin, forcing me to look him in the eye. “Pop?” he repeated desperately, his dismay and frustration palpable. “Pop!”
“I don’t know how we’re going to do this without soda,” I told Brittany, longing to grant his simple wish, fearing an ugly, public scene if I let him down. She seemed to waver, then shook her head decisively.
“You can have juice, or we can go home right now,” she told my son. “You rather go home?” She pointed toward the door.
“No!” he cried in alarm, throwing off his coat as he flung himself into the booth my husband and I had claimed.
Would Daniel even understand the connection, I wondered, between stealing pop at his group home, and being denied it now, with me? Brittany’s consequence may do nothing but taint the few hours we had with him. We’d reached a no-win situation five minutes into our visit.
We’re in a unsettled place these days. My son’s aides manage him as I no longer can, and I don’t know whether to laugh or cry. I am his mother, but no longer his caregiver; his most ardent advocate, yet outside his circle of daily life. Their fondness for Daniel is obvious, but tempered by a professional objectivity I can never provide. His team aims for the long term; I live for the fleeting moments of tenderness, of meaningful contact with my son.
He wasn’t fooled by the paper cup holding the Hi-C I dutifully poured for him instead of the Diet Coke he’d been counting on. He knew he’d been cheated. I felt cheated, too, yet obliged to support Brittany’s authority, authority we granted by placing Daniel in her care.
He tore through the sticker book I’d brought him, scattering its pages across the table, requesting pop every few minutes, clenching his hands in anger when we told him no. Andy tried to calm him, squeezing Daniel’s hands in his own as he’s done for years to soothe him. But our merry visit was going south fast.
Making matters worse, we’d caught the attention of a young girl sitting with her parents a few booths away. I noticed her furtive glances when we first sat down, and imagined her mother’s whispered explanation of Daniel’s likely disability, her admonishment not to stare.
Unfortunately, the girl couldn’t seem to resist.
She peered over her shoulder compulsively, regarding Daniel like an exotic carnival attraction. Cautious at first, she quickly grew bolder, staring opening as the minutes ticked by.
Annoyed, I caught and held her eye. I’m on to you, toots. Knock it off.
She returned my stare unabashed for a good ten seconds, finally dropping her gaze, only to renew surveillance of Daniel moments later. When her mother left the table briefly, she shifted position, stretching her legs across the seat to observe the spectacle more comfortably. Her father, meanwhile, was oblivious, his nose stuck in his phone.
I reported this all to Andy and Brittany, who were sitting with their backs to the girl.
“How old do you think she is?” I asked Brittany, whose own children are eight and nine. Perhaps I was expecting more courtesy than a child her age could reasonably demonstrate.
“Oh, she’s old enough to know better,” proclaimed Brittany, glancing behind her. “She must be 11 or 12. She definitely ought to know better.”
I met the girl’s eyes again, my disapproval pulsing across the few yards between us. She stared back, her expression an unsettling cross of innocence and cunning. She knew, I was sure, that staring at my son was wrong, perhaps even distressing. But she did it anyway. I couldn’t imagine my own daughter behaving this way in the face of such obvious adult reproach. It was disconcerting, creepy, even, her brazen gaze an unwelcome spotlight on an already strained, dispirited experience.
Perhaps I’d known from the start that something would blow that day. Or maybe it was the epic struggle for Andy’s drink that broke me.
One momentary lapse of vigilance, and Daniel had snatched the forbidden cup and began sucking frantically on its straw. Andy grabbed back and a tug-of-war ensued, my husband the final victor, but not before iced tea had splashed across the table and onto Daniel’s lap.
Tossing a sodden napkin aside, I looked up to find the girl’s gleeful attention glued to the bizarre scene we presented: a 24-year-old “normal” appearing man’s frenzied struggle with his stepfather over a soda cup in a pizza parlor.
“That’s it,” I muttered, abruptly rising from our booth.
Alarm and guilt washed over the mother’s flushed face as I stood before their table.
“Your daughter has been staring at my son since the moment we got here,” I said in a low, controlled voice. “He is severely autistic and I understand his behavior is unusual. But we are trying to share a meal with him. And apparently your daughter doesn’t understand that it is rude to stare at disabled people.”
Without waiting for a reply I returned to my seat. Glancing up, I saw the girl’s face crumpling as she met her mother’s appalled glare, and heard her belated whimpering: “I’m sorry! I’m sorry!”
I looked down at our napkin strewn table.
“I think she’s apologizing,” Brittany murmured, but I didn’t look up. I didn’t want an apology. I just wanted her to stop staring at my son.
Did I do the right thing? Did I overreact? A friend noted that I could have used the episode as teaching moment, sharing insight into autism and disabilities in general. Our outing could have ended on an positive note.
Honestly, though? I wasn’t inclined to teach that insolent girl a damn thing. My son’s dignity trumped sensitivity training by a mile. Whether or not Daniel was aware of the scrutiny didn’t matter a bit; I knew. My role in his life has diminished, but my instinct to protect him was what mattered in that moment. I’m surprised I didn’t go further, and scream at her out loud: Stop looking at him, you horrid little brat! He can’t help it, he can’t help it and neither can I! This disorder has consumed us both.
Yet I’ve plucked at the layers of this drama a dozen times this week, revealing more questions than answers. Did I lash out merely to assert authority over a ill-behaving child because I’ve lost control of my own? Had I simply unleashed my impotent sorrow, recognizing that transitory moments are all I have left with my son, and one more of these had been stolen by the disorder that rules our lives?
Will my rebuke help that girl in the long run, kindle a new awareness or compassion? Or had I simply punished her for bearing witness to our pain?
Was this, in truth, less about my son than it was about me? Can I possibly separate the two?
Daniel’s care team is playing a long game now; I just want to be his mother for a few precious hours, untethered by rules or consequences or procedures, to engage him on my own terms. Yet I don’t know if my terms are sustainable. I fear alienating the people we are dependent on, who care well for my son, who we are indeed luckier than many to have found. Who am I to question their approach when they’ve shown Daniel a fuller life in the last 12 months than he has experienced in years?
There are no easy answers here. Yet I feel compelled to reclaim my place, my own authority, to form a new set of rules for the two of us, supporting our relationship as mother and son.
I have only my heart to guide me. But that will have to be enough.