Worth It

My husband enjoys pointing out that I look more like my Uncle Bill every day, especially when I’m smiling.  Which wouldn’t be so bad, except Uncle Bill is 90.  Having my picture taken has become an exercise in self-consciousness.

My likeness to my uncle doesn’t bother my son, however.  I’m told by his caregivers that he asks for me every day, wanting to know when I’m coming to visit.  He’ll fetch a photo of me from his bedroom and tap my image to make sure he is understood.

“Mah?” he asks earnestly. “Mah?”

If only my visits these days even remotely resembled the outings I once hoped to provide him.  Instead, the obsessions governing his behavior make it almost impossible to bring Daniel safely into the community when I am alone to manage him.  His impulsivity, bolting, and tendency to grab what he wants, from anywhere or anyone, severely limit our participation in most public experiences.  Autism has dictated the whole course of his life, and now dictates our time together, as well.

We stick to the McDonald’s drive-through, eating in my car in the parking lot, safety locks engaged.  I drive through the rural hills outside town to spend time alone with him, and ask about his life away from me: his activities, his housemates, the meals he most enjoys.  I don’t really know if he’s listening.  He answers with an occasional “Yeah!” or alarmed “No!” if I suggest a new route, a different fast food outlet, a departure from our established routine.

Before long he’s itching to head back, anxious to stop at the gas station for the highlight our visit: selecting a soda from the cooler, which he’s allowed to drink once we’re back at his group home.  He’s ready for me to leave then, sometimes hastening my departure by waving his arm and instructing, “Bye!”

He seems content with this routine.  It appears enough for him just to see me, to receive my kisses and occasionally stroke my hand, reassured that I’ve come back again, his touchstone, his connection to the life we used to share.

I wish it were enough for me, that I could accept these rigidly defined encounters as what he needs from me right now, that his idea of happiness differs from my own.  I try to convince myself that if a soda from a gas station is enough for him, providing that small pleasure should be enough for me.

There are times I can hardly bear it.

I expressed this to his caregivers during my visit a few weeks ago.  I’d brought a pizza for lunch that day to escape the monotony of another meal in the car, and we talked while Daniel and his two housemates ate at the dining table.

“It’s disheartening,” I told the two women on duty at his group home, who I’ve gotten to know during the seven months since Daniel’s move there.  “I feel sick that this is all we share together, that I can’t do more for him, you know?”

They did know.  They face the same challenges when bringing Daniel into the community.  They’ve seen how tightly he clings to ritual, to my visits unfolding precisely the same way each week, perhaps giving him a sense of control when so much of his life is determined for him.

They don’t know the Daniel I remember, who once enjoyed a fuller, more varied experience.  They don’t know that we used to go to parks, and playgrounds, read books together or eat at Perkins without incident; that we’d found a small beach near his former school where he tossed sticks and pebbles across the water as he did when he was a boy.  They couldn’t imagine us strolling through Target, where Daniel chose snacks and sticker books and magazines, unburdened by the compulsions which now drive his waking hours.  They couldn’t fully understand my despair, the loss I feel at his shrinking experience, how week after week I dread confronting anew the reality of his limited, shallow world.

“Do you want us to go with you?” one of his caregivers, Danielle, suddenly offered.  “I mean, we could take the guys and get ice cream or something.  We’ll help you keep an eye on him.”

I considered Dan’s reaction to a break in our prescribed routine, the agitation it may cause, but decided it was worth a try.

We followed them to Frostie Freez, picking up cones in the drive-through, then met at a nearby park.  Disconcerted, Daniel asked repeatedly for “store,” but accepted my assurances that we’d hit the gas station after we had our cones.

We chose a picnic table near the jungle gym, keeping a watchful eye as Daniel spotted the large fountain drink sitting unattended while a father pushed his toddler on the swings.

“Don’t worry, Daniel,” I told him, stroking his arm and squeezing his hand.  “We’ll get a pop when we’re done with our ice cream.”

He plowed through his cone, and I entertained him with photos on my phone while the rest of the group finished their ice cream. After just 10 minutes he’d had enough, anxious for his gas station stop, the activity he’d been counting on.

Walking back toward our cars, though, I was elated.  We’d broken from routine, if only briefly.  Impulsively, I held my phone out to Danielle.  “Will you take our picture?”

I hugged my son around his waist, self-consciousness forgotten, smiling as Danielle snapped a picture, Dan grimacing slightly at the delay but trying to return my affection.

“C’mon, Dan!” the women called, as Daniel produced the cheesy grin he always supplies when told to smile.  “Give us a real smile!”  Danielle kept snapping, trying for a good shot of both of us, as Daniel shuffled his feet, bored with this sentimental journey and ready to move on.

Danielle fiddled with the preview function of my iPhone’s camera.  I let go of Dan and reached forward to examine the phone.

That was all it took.  Daniel was suddenly bolting full speed toward a picnic table 30 yards away, McDonald’s bags and cups spread across its surface.

The scene is scorched on my memory: three middle-aged women running in wild pursuit, knowing we’d be too late, me in flip flops, bulky canvas purse banging against my hip, all of us shouting with desperate futility, “Stop! Daniel! Daniel, stop!”

Danielle cried out in warning to the woman and young girl who watched our approach like deer in the headlights, frozen in puzzled horror as Daniel barreled straight for them: “Grab your food!”

It was over in seconds, frothy milkshake upended, landing with a splat at Daniel’s feet, most of the sticky liquid missing his mouth completely in his haste to consume it, the forbidden beverage, the temptation he may have withstood had I not wanted a photo to commemorate our successful divergence from routine.

I uploaded the pictures to my laptop when I got home.  Daniel looked anxious, torn, trying to roll with the experience but worried by the threat to his ritual.

All week I agonized.  Was forcing an experience I wanted for my son worth a near-catastrophe, another public humiliation?  If Daniel is happy with a trip to the gas station, why isn’t that enough for me?

The following week we stopped for his soda at the onset of our drive rather than on the way home.  He was more relaxed that way, laughing and rocking in his seat, cradling the coveted bottle on his lap, secure, able to more fully enjoy the ride.  It was a positive visit, a happy one.

I looked again at those photos yesterday, at my own image, glowing and smiling freely, joyous to be with my son, in whatever small moment we were allowed, however far it fell from what I dream for him.  The scene that followed does not negate the joy of that moment, the hope sown by reaching for something more.

I don’t know yet how to find the right experiences for my son, those which may bring greater fullness, and curiosity, and joy to his life now, as a young man.  But continuing to seek them is worth it to me.

It will always be worth it.