Years ago, while I worked for the church a block from my home, I’d sometimes bring my son along when he had a day off school. His wonderful sitter was unavailable only on the Jewish High Holidays, so fortunately this didn’t happen very often.
My boss, the church pastor Chris Coon, didn’t mind, or never told me if he did. A typical kid Daniel’s age could stay home unsupervised, but Chris understood that wasn’t an option for my 13-year-old with autism. He was fine with Daniel hanging out in the nursery across the hall from my office, examining the trove of books and toys stowed in colorful bins, while I hustled through the most pressing tasks before his patience wore thin.
Walking down the sidewalk to the church one such day, I explained to Daniel that we’d have lunch at Dear Franks as soon as I finished working. He endorsed this idea by gesturing over his shoulder in the direction of the popular hot dog shop a few blocks away.
“Hot dog?” he verified, and I happily concurred. “Yes, hot dog! We’ll get a hot dog soon!”
We’d been settled in for just a few minutes when Daniel crossed the hall from the nursery to confirm the plan.
“Hot dog?” he repeated, planting himself in front of my desk.
“Yes, buddy, we’ll have hot dogs as soon as I’m done.” Reassured, he returned to the nursery.
A few minutes later he was back, ambivalence creasing his brow.
“Burger?” he asked dubiously.
“Well, sure, you can have a burger,” I replied. “Whatever you want.” Satisfied, he returned to the nursery once more.
A minute later he was rounding my desk and hovering over my chair.
“Hot dog?” he asked, his eyes boring into mine for emphasis.
“Yes, a hot dog’s fine,” I responded, repressing a sigh. “You can have whatever you’d like.” I gave him a piece of candy from the jar on my desk. “You can have a hot dog or a burger. Fries, too!” Mollified, he went back to the nursery where he remained for 90 seconds.
“Burger?”
We volleyed this way for 45 minutes, until Chris came out of his adjoining office and stood behind my computer monitor. We must have been driving him crazy.
“I don’t know how you do it,” he observed honestly. “You’re incredibly patient.”
Ruefully, I explained that these exchanges were so commonplace that they seemed entirely normal by now. Sending off one last email, I called it a day, and Daniel and I walked back down the sidewalk toward the hot dog stand.
Halfway there he stopped in his tracks and seized my arm.
“Chicken?”
*****
Ten years later Daniel and I sat at the kitchen table in his group home, eating the fajitas I’d picked up at Chipotle. As usual, he polished off his diet Coke in no time, and pointed to my cup.
“No, Dan, this one’s mine,” I told him. “You drank yours already, remember?”
My repeated assurances that he’d have another drink at eight o’clock, his scheduled soda time, did little to assuage his desire for mine, as I finished my own meal and stuffed the remains in the bag.
“Pop?” he asked every 30 seconds or so.
Every 30 seconds or so I told him no.
Switching tactics, he began pointing to the driveway. For years I’d stash a soda in a cooler in my car, his treat for the ride during my visits. He hasn’t forgotten.
I told him no half a dozen times.
After lunch he sat in his bedroom, temporarily distracted by the sticker book I’d brought for him, naming, impatiently, various animals and objects as I pointed to them.
We examined a few puzzles he enjoys on his iPad. I asked him about a T-shirt he’d selected at the Renaissance Faire. He showed me the new pair of gym shoes he’d picked out at Sports Authority.
Every minute or so he pointed to the hallway and asked me for “car.”
I told him no again and again.
His agitation mounting, we moved to the patio so Daniel could blow bubbles. He pointed again toward the driveway.
“Let’s hang out here, Daniel,” I replied brightly. “Show me your backyard!”
He unscrewed the top of his bubble dispenser and hurled its contents to the grass, clenching his hands in front of his face in rage.
“OK, Dan, no more bubbles today,” his one-on-one aide, Brittany, called from the backdoor. Daniel turned to me and asked plaintively, “Buh buh?”
Knowing I must support her authority, and the consequence he’d brought on himself, I told him no once more.
*****
For eight years my visits have meant reassurance that I’m still in Daniel’s life, but also the modest treats he craves: sticker books, chocolate covered pretzels, the blasted, coveted soda, his obsession for which shows no signs of stopping. His case manager advises modeling a new kind of relationship, transcending the tangible offerings I use to demonstrate my affection, and letting go of routines honed over years to find a fresh connection as mother and son.
Changing Daniel’s expectations of me, though, seems almost impossible sometimes. I simply don’t know how to do it.
We sat in the living room following the outburst in the yard, Daniel resigned, it seemed, to disappointment.
“It’s hard to tell him no all the time,” I remarked dolefully. His aide nodded in understanding. Brittany’s affection for my son is obvious even as she enforces the rules his team has established.
“I can’t imagine how it feels for him,” I went on, “to be denied again and again, when he wants so little from me.” I paused, fighting to control my voice. “Just once I’d like to tell him yes.”
Brittany murmured consolingly.
“I mean, I get it,” I continued, unsure what I was even trying to express. “He must be desperate to exert control, when so much in his life is determined for him.” My voice trailed off uncertainly. “I know he’s happy until he sees me and starts remembering… I know he’s happy most of the time — ”
From her seat in the kitchen, the other staff member on duty that day suddenly chimed in.
“Some people just need structure,” she pointed out matter-of-factly.
I stared at her, fumbling for an appropriate response.
“Well, duh, lady,” came to mind. “Why do you think he’s living here with you instead of at home where he belongs?”
How to explain that my despair in that moment had nothing to do with what my son needs, but everything to do with the emotion those needs prevoke?
“You don’t know my son as I do,” I thought defensively, “and you certainly don’t love him as I have since the day he was born.”
These discouraging visits make me question whether I should be heeding my son’s new team at all, continuing to follow their lead as my heart screams otherwise. At the same time I’m wracked with self-doubt, asking, in my darkest moments, where my love has taken us. My mother’s heart ultimately failed to provide what he needs to live safely and productively, after all, the structure that makes his experiences now possible. Who am I to question the professionals who have succeeded in showing him a broader world, a world in which I am a mere visitor?
*****
There is no black and white with autism, nor in our shifting reactions to its far-reaching effects. It’s not so cut and dried, mired here in ambiguity, the chronic, desperate search for what is best for our children, stumbling our way through the fallout of this hideous, inscrutable disorder.
I’m learning, though. My role is changing, but I’ll always be his mother, whatever growing pains we are experiencing now. Outside Daniel’s group home we manage fairly well, when I join him and his aide at a restaurant, or wave to him, smiling at his joy, as he swims at the sports complex nearby.
I am part of his new life in these venues, rather than a reminder of the life we used to share. That’s where he needs me now.
But I’m aiming for the day we can simply walk down a sidewalk again, eager for a hot dog, or a burger, or a chicken sandwich.
The day when I can say yes once more.
