80: The Blister

80: The Blister

From Chicken Soup for the Soul: Raising Kids on the Spectrum

The Blister

If you don’t like something change it; if you can’t change it, change the way you think about it.

~Mary Engelbreit

Click. Clack. It was the soundtrack of my day, the sound of my five-year-old son Judah tapping his wooden toy trains together. A pot of soup simmered on the stove.

I sat at my kitchen table and picked up the dog-eared notebook Judah carried back and forth to school. That notebook. Every day like clockwork it came, its black and white marbled cover an intruder in my daily routine. My husband would be home soon. Judah and his brother Seth, two and a half, were watching Mr. Rogers’ Neighborhood in the next room. Time to read the notebook.

Next to today’s date was a sticker. “This is what I did today!” exclaimed the bright yellow happy face. “Language therapy today: He/I; I/you. Judah still confuses these words. Echolalia noted. Comments: We are trying to redirect Judah’s behavior regarding unstructured free play. He has a tendency to go off on his own and become engrossed in one object, e.g. trains. He is in his own little world. He isolates himself and will not tolerate other children. Self-stimulatory behavior observed. Poor eye contact.”

The clear message was this: Your son is imperfect, damaged, broken. God’s mistake. Sometimes it felt as if we were locked in a nightmarish tug-of-war with my husband and me on one side desperately pulling our son’s body from the jaws of a monster. The monster was autism.

Click. Clack. Judah wandered by, a toy train in each fist. He had chewed his turtleneck collar to shreds.

“Hi, honey.” I leaned toward him, cupping his chin in my hand and twisting his face to mine. My eyes captured his and grasped them forcefully. “Judah, it’s almost time for dinner.” I paused, watching the blank face for signs of recognition.

It was like waiting for a gumball machine. The quarter went in, chugged its way down. Then, the gumball climbed a conveyor belt to the top of the transparent dome, and descended, sliding its way through roller-coaster turns, riding up and around and down until it finally plopped into the cup.

“You are having macaroni?” Judah finally said.

“You mean you would like macaroni.”

“Okay.”

“Okay, Judah. We can have macaroni. Will you help me?”

Again, the wait.

“Judah can help me?” he suggested.

“Judah can help me.”

“Okay.”

I propped him up on his tiptoes on top of the stepstool, and turned on the faucet. Together, we filled the saucepan and set it on the stove, moving the stool as we went along. While Judah perched near the stove, gawking at the water, I turned to stir the soup. Judah must have reached over, because suddenly I heard, “W-a-a-a-h!” Face red, mouth contorted, Judah wrung his hands, his shriek exploding over the house.

I dropped the spoon and swept him up in my arms.

“Oh, honey, are you hurt? What is it?”

He raised one trembling hand.

“Did you burn yourself?” Amidst his screams I pushed his hand under the faucet and let the cool water run over the burn. Then I used a clean dishtowel to swaddle his hand.

Judah glared at the bundle.

“It’s a burn, honey. I know it hurts, but Momma will make it better.”

I unwrapped the finger like a present. There it was, a new blister. My breath stuck in my throat.

“A tissue!” he screamed.

“A tissue? What for?”

“Wipe it off! Wipe it off!”

“Judah, no, it’s a blister. Part of your own skin. It doesn’t come off.”

“Take off the Band-Aid!”

“It’s not a Band-Aid. It doesn’t come off. It’s a kind of boo-boo and it will get better soon.” I touched the blister to my lips.

He sniffed.

I gathered him up in my arms, wrapped myself around my son’s bony body. Judah needed my reservoir of calm; I dipped into it with both hands.

He said nothing and did not return my embrace.

And then I realized. I’d said it myself. The blister was part of his own skin — like autism. His chewed-up shirt, his gnawed fingernails, his confused pronouns, his tantrums, were all part of him. They wouldn’t come off. They were woven into his gentle nature, inseparable from the presence I saw in those unfathomable hazel eyes.

He studied me as if I were a hieroglyphic, and I found myself deciphering him the same way. I dwelled on his flushed cheeks, his tearless eyes, the small sucking motion of his lips, almost picturing the gears, lifts and pulleys running the colorful mechanism of his mind.

I could see his question landing with its familiar plunk. “You are playing with trains?”

“No, honey. You, Judah, you want to play with trains.” I pointed to him.

He looked down at my finger touching his chest. The quiet eyes inched over my hand like a caterpillar, climbing the skin of my arm to my shoulder, neck, face. Eyes.

Eye contact. Something in me let go. I felt my heart fall backwards and land, surprised to look around and find that the tug-of-war was over, and Judah was safe, looking at me with his hopeful wordless eyes.

In that moment Judah gave me a great gift. I knew then something it takes most parents years to learn — that my child doesn’t belong to me, he is himself, not a reflection of my ego. That he is not broken but whole — created in the image of God, a God who understands disability, because there are things even God can’t control, things for which God needs our help.

Supper could wait. I took my son’s hand. “Yes, Judah. I’ll play trains with you,” I said, and I turned off the stove.

~Faith Paulsen

More stories from our partners