What Are We Going to Do?

A trip to New York in the fall, during the height of color, was meant to be a family vacation, woven together with visits to relatives and friends along the way. By then, I knew that five-year-old Christopher (Kippy) had autism. What I didn’t yet understand was how deeply it would touch every part of what we did.

He had learned a phrase that clearly held some sort of meaning for him, though we didn’t yet know how much, because it was classic echolalia.

“What are we going to do?” he repeated in a lilting voice.

He sat behind me strapped in his booster seat, in the RV we’d borrowed for the trip. The hum of the engine steady beneath us, his small sneakers tapping lightly against the seat as he repeated it again and again.

“What are we going to do? What are we going to do? What are we going to do?”

“We’re going on a trip to see Grammy,” I answered.

“What are we going to do?”

“We’re going to New York. We’re going to see Grammy.”

“What are we going to do?”

With each repetition, his voice grew louder and more urgent, threaded now with something rising toward panic.

“Why does he keep saying that?” Zack asked, his forehead resting against the cool glass as the Tennessee hills rolled by in long, green waves.

“What are we going to do?” came again from Kippy’s seat, like a needle stuck in a groove.

Twelve-year-old Blair decided the solution was to tell him everything.

“We’re going down this road. The wheels of the car are turning. We’ll stop at a light. Then we’ll go into a restaurant…”

But interestingly, Christopher seemed to listen; his gaze was fixed somewhere above Blair’s dark feathery bangs, his head tilted, brow furrowed.

“He almost seems to understand,” I said to Dan.

“I wouldn’t be surprised if he does,” Dan replied. “Maybe we should tell him more.” And so we began to try to explain, narrating everything, every transition, each step.

“We’re going to stop at the hotel. Daddy will go in first. Then we’ll carry the suitcases. Then we’ll go into the room…” And almost imperceptibly, things began to smooth, but the trip wasn’t over.

I felt distressed by his manners. I didn’t know how people would interpret what they saw. We avoided restaurants, choosing instead to make sandwiches and eat in parks, the fall grass fading from summer green, but still warm from the sun. But actually, the picnics were something of a gift. Still, meals were difficult. The moment I set a dish in front of Kippy, down went his head, eating straight from the plate. At best, he would grab with his hands and shove the food into his mouth, mustard painting his palms and arms. I’d sit beside him, guiding his hands, helping him hold a spoon, one bite at a time. But the moment I turned away, the old pattern returned. No explanations or demonstrations seemed to reach him.

When we at last arrived in upstate New York, it was apple season. The air itself was scented, cool and damp, with the faint sweetness of fallen fruit. Orange maple leaves skittered across the gravel driveway, fluttering along the ground as we climbed out of the motorhome.

Christopher ran wildly around the vehicle, his footsteps crunching over leaves and small stones. He bowed and bent in a crazy dance all his own, muttering grunts to himself.

“What are we going to do? What are we going to do?” he again chanted.

We had borrowed the motorhome intentionally, so Dan and I would stay there with Christopher and the baby, while the other children slept in Grammy’s house. I knew meltdowns would be forthcoming, and the motorhome felt like a small, contained refuge.

It worked out well, and we were able, for the most part, to shelter his struggles from the relatives. We spoke plainly about his autism and the road we were on. Everyone responded with support and kindness.

Our next stop was Connecticut. A small group of families had gathered, interested in community life. They had invited us to come and share, drawn by what we had experienced growing up in community at Homestead Heritage. I was both excited… and uneasy.

By then, I had been teaching child-training classes for a few years. If I am honest, perhaps I’d taken some pride in the success we had seen with our first four children. But then came Christopher. We didn’t introduce ourselves by explaining his autism; that seemed awkward. We simply let thing unfold.

The group had prepared an evening for us, supper in the backyard, a fire crackling low, with thin ribbons of smoke rising. The air had an early-autumn bite that stiffened my fingers and numbed my ears. There was to be singing and worship, so Dan brought his guitar. Helen was to play the piano. At first, all went well with lots of introductions and small talk.

Christopher tugged at my skirt, the fabric twisting in his grip.

“What are we going to do? What are we going to do?” I bent low and whispered each step ahead to him.

The children were seated at a long picnic table, and the adults sat at a nearby separate table. I probably should have had Christopher sit with me, but I asked Helen, at fourteen, to stay close to him.

Hot dogs were served, on glass plates for the adults, paper plates for the children. Someone placed a glass plate in front of Christopher… he flapped his hand in excitement. He was hungry, since dinner had been so delayed. But, the young woman, realizing her mistake, took the glass plate away to replace it with paper.

I saw it happen out of the corner of my eye, and my heart dropped. He was already tired, already hungry. This wasn’t going to go well. He wouldn’t understand. Suddenly, he pitched backwards, rolled off the bench and onto the ground, screaming, writhing in the damp leaves and black soil, now clinging to his clothes and hands. The whole gathering fell silent, as I abruptly left my conversation and rushed to him.

“Kippy, they’re bringing you another plate,” I whispered close to his ear. “They’re bringing you another plate.”

But the screams only grew louder, echoing against the stillness of the yard. He clamped his hands over his ears.

“What are we going to do? What are we going to do?” he cried, until his hoarse words dissolved into breathless sobbing.

I couldn’t calm him, so handing the baby to Helen, I tried to de-escalate things, only to trigger a meltdown from another direction…my baby’s feeding was interrupted when I suddenly pulled him from under the nursing cape.

Christoper was large for five years old, but lifted him anyway—his body rigid, hot with distress, covered in dirt, now soaked in urine—and carried him to the motorhome. The cool night air echoed with his screams. There, I spent the rest of the evening trying to soothe him.

Helen, always conscientious, came quietly, opening and closing the door in intervals, letting in the distant murmur of voices, to ask if we needed food or for her to take over. I fed Christopher a hot dog, one bite at a time, between his shuddering sobs.

Eventually, he fell asleep in my arms, his breathing finally softening, his weight heavy and exhausted against me.

Finally, I laid him down on the couch and sat there a moment in the quiet. By now, the evening was nearly over, and I didn’t know what to say, what to do. I didn’t know how to explain. So I didn’t. Finally, trading places with Helen, I simply stepped back outside for the last moments of fellowship. And tried to act as if it hadn’t happened.

That night, lying beside Dan in the motorhome, the narrow space dark and still, I cried.

“We’ve been a disgrace,” I said. “Everything we stand for… people are going to misunderstand. Maybe we shouldn’t have come. Maybe someone else should have…”

Dan reached over and patted my hand.

“I don’t think they feel that way,” he said gently. “I think it’s obvious he has needs.”

“But what do I do?” I said. “What are we going to do?” Even as I said it, I heard the echo.

What are we going to do?

“God is going to help us,” Dan said. “Step by step. The victories will mean more because of the battles. We have to trust that people will understand what we can’t explain.”

Then he added,

“And you’re going to have to let go of that image… of being the perfect mother.”

I knew he was right, but the path forward felt hidden behind a fog of uncertainty. If only I could have seen a few years ahead. If I could have known that these very people would one day be woven into our lives. And it wouldn’t be our perfection that spoke, but our weakness.

It could never be us speaking only transmitting His voice through the victories God gave, His strength made perfect in our weakness.