In my room sits an empty cardboard box that my middle son gave me for Mother’s Day. “I don’t understand why you have pillows on your bed that you don’t use for sleeping,” he said. “But I thought I would make you a place to keep them at night.”
This box is, in so many ways, emblematic of my son. He doesn’t always understand “normal” things like decorative pillows; he often doesn’t understand this world. But he loves the people who do crazy things like own pillows they don’t use for sleeping. He wants us to know that, in his own way, he’s trying to accommodate us, too.
The closest we’ve been able to come to a diagnosis is something like-but-not-quite autism. My son has defied labels, stumped experts, confounded the special education team at his school. I joke that if his IEP meetings were drinking games, and I did a shot every time someone described him as a “puzzle,” I would end every one with alcohol poisoning.
Sunday morning, after waking, dressing, and feeding my four other children, I check to make sure my son’s blue plate is clean and follow the precise directions we’ve typed out for his breakfast.
I pull him from bed, still mostly asleep, and steer him down the hall.
“I want my breakfast,” he mumbles sleepily.
“After you’ve showered,” I say.
Instantly, he is fully awake. He tries to bolt: “I don’t want to take a shower!” He screams, kicks, and cries. Sometimes he bites me. But I get him showered and wrapped in a comforter, and he eats breakfast while relaying that his food is too hot, then too cold, the cheese is out of alignment, something smells like vinegar, he wants coffee, he wants to go back to bed, he hates church, he hates me.
After breakfast I wash my three-year-old’s face, tie my six-year-old’s shoes, remind my eleven-year-old he’s volunteering in the tech booth, and my thirteen-year-old that she’s acolyting. My middle son bounds onto the couch where he curls up in a tight ball under his comforter.
“In five minutes, you need to get dressed for church,” I address the comforter lump. There is no response. I repeat myself in one-minute intervals while I clear the table and clean up a potty accident.
“It is time to get dressed,” I announce at the five-minute mark. “You can dress yourself, or I can help you. I know you do not like it when I help you; therefore, it would behoove you to go upstairs and get dressed yourself.”
Logic, coupled with at least the illusion of choice. My son doesn’t like to be treated like a child.
The comforter flies off the couch with an explosive thrust. “Why do I have to get dressed? I hate getting dressed!”
“You have to get dressed because we are going to church,” I reply.
“Why do we have to go to church? I hate church!” he screams. For this I do not have a good answer. Over the years we’ve tried all sorts of scriptural and theological responses, before finally saying, in a moment of defeat, “This is what we do on Sundays.”
“I hate church!” My son stomps upstairs, reappearing in pajama pants and a ripped t-shirt. “I’m wearing these clothes,” he says.
“Those are not church clothes,” I respond. “Please put on the clothes I laid out for you.”
“Why do I have to wear church clothes?” he challenges. I weigh the various responses running through my mind and decide on total honesty. “Because at our church, people expect you to wear nice clothes on Sunday. When you don’t, they judge me. And they’re already judging me for your behavior. I’d like you to look nice so I’m judged a teeny-tiny bit less.”
He looks at me, face scrunched into a scowl, nostrils flaring, hands clenched into fists. But I see in his eyes we’ve achieved a point of connection. He will go back into the bedroom and emerge in his Sunday clothes without a further fight.
“I HATE CHRISTIANS!” he screams as he goes. “I HATE CHRISTIANS SO MUCH!”
Sometimes I do, too, I think. I recall a time at church when a parishioner told me there was no such thing as autism; I just needed to smack my son until he behaved. I remember the time another parishioner dismissed me with the words, “He looks normal to me.”
My husband and I believe in God, but put much of our faith in science. We’ve never taken our son to a healing service. I’ve prayed for divine help with the struggles he faces, fasted and prayed that he wouldn’t get kicked out of kindergarten (which he did), but I’ve never prayed that God would “heal” him.
Part of my reluctance is that I’m not sure I believe God would “heal” my son. And part of my reluctance is that I wonder, in our rush to embrace the miraculous, if we lose sight of the miracles God is already working. My son sees the world differently. And in that difference there is beauty and wonder, for those who stop and listen. Our family has put our faith in science because science has offered us what our community of faith thus far has not: education, understanding, adaptive behaviors. And the possibility of a changed environment, where institutions will adapt to a child, instead of the work of change being wholly incumbent on the one who has been labeled “disabled.”
Rage finds us out of nowhere as we finish dinner. My son is curled up on the floor, sobbing, the anger he feels at the general injustice and unfairness of the world focused on me with laserlike precision.
“You are not empathetic!” he screams as he sobs, his voice cracking. “You are not a good parent. You are worse than a mass murderer.” His thin shoulders heave and shake. “You are not a normal mother!”
“This is true,” I reply. “By definition. I cannot be a normal mother because I am mother to you.”
Abrupt silence at this new thought. I sink to the floor and he lets me wrap my arms around him, the planes and angles of his body softening into curves as he leans into me.
“If somebody offered me a ‘normal’ kid instead of you, do you know what I would say?” I ask him. “I would say, ‘No way.’”
His face is tear-streaked and marked with red scratches left by his fingernails. “If you got to pick any little boy you wanted, would you choose me?”
“Today, tomorrow, and always,” I tell him. “I would pick you. I am so, so happy God chose me to be your mother.”
Life with my “disabled,” extraordinary, incredible son has become my “normal.” And I would choose this life any day, because I see the beauty and wonder. This is normal to me.
Contributor: Elrena Evans
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Elrena Evans is Editor and Content Strategist for Evangelicals for Social Action. She holds an M.F.A. in creative writing from Penn State, and has also worked for Christianity Today and American Bible Society. She is the author of a short story collection, This Crowded Night, and co-author of the essay collection Mama, PhD: Women Write About Motherhood and Academic Life. She enjoys spending time with her family, dancing, and making spreadsheets.