This Part Is the Worst Part
The mother of a non-speaking autistic son yearns to know the answer to one simple question: ‘What is wrong?’,
This Part Is the Worst Part
The mother of a non-speaking autistic son yearns to know the answer to one simple question: ‘What is wrong?’
By Allison Moorer
Singer-songwriter Allison Moorer has an 11-year-old son, John Henry, who was diagnosed with profound autism when he was 23 months old. His inability to express himself with words, and her inability to know how to help him in times of distress, remain the hardest issues for her to deal with.
I’d heard him start to cry after we’d both gone to bed. I gave it a beat to see if maybe he was having a bad dream and had cried out in his sleep, thinking that if he had, he’d settle back down. The cries kept coming.
I threw back my covers, went to his room, and sat down beside him on the bed where he lay. He writhed and buried his head in his pillow. I tried to put my arms around him but his body was as stiff as a board.
“What’s wrong, baby?”
He sat up. Tears poured down his flushed face, his mouth open in an anguished shape, his eyes terrified. He put his hands over his ears and alternated between flopping down and shrieking into his pillow, and trying to stop himself from crying while doing the most heartbreaking thing that children do when something has gone terribly wrong — trying to breathe normally after they’ve become so upset that the rhythm has gone ragged. His bottom lip quivered as he struggled to reclaim some depth for his shallow, stuttering, double breaths.
I started to cry too, though silently, so maybe he wouldn’t know.
I can’t stand this part.
This part is the worst part.
This part is a nightmare.
In fact, I hate these moments the most of all the moments I hate. More than the exclusion, more than the staring and misunderstanding of other people, more than the harrowing vision of a future we’re unprepared for, more than anything. With all of the helplessness I feel in so many situations, I feel it most intensely in this one. These moments are the ones in which I know the least.
If I am unable to know what’s wrong, how can I help?
If I am unable to know, then who is able? If no one can figure out what hurts him, where does that leave him? A crying fit can lead my mind from the present moment to a vision of my son abandoned, alone and hurt in five seconds flat. How the mind spirals. Yes, this part is the worst part.
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I went through the list of possible causes in my mind. Is he in physical pain? I stood up and got three chewable ibuprofen from his bathroom cabinet. I tried to get him to take them but he pushed my hand away and refused them. I bit one in half and chewed it up so he might think they were candy. He loves candy. He then took them from my hand, put one to his tongue and gave them back to me. I put them on his night stand. I offered him a drink of water but he pushed that away too. I tried everything I could think of — rubbing his back, applying deep pressure to his arms and legs from my hands — I did everything short of getting him out of bed, which didn’t seem like a smart move if I wanted to get us back to sleep. It was clear that I couldn’t do anything but just be there. So that’s what I did.
I lay by his side and wondered … Does he have an ear infection? He’s in the water every single day and now his hands are over his ears, particularly the right one. Could just be that he isn’t wearing his headphones right now, but I know what water in the ear feels like and it hurts like hell. I hope he’ll take the ibuprofen. He might when I’m not looking. He could have a headache. A migraine? God, please don’t let him have those. A brain tumor?
Appendicitis? Is he touching his side? The virus? Growing pains? Leg cramps? I had terrible leg cramps when I was his age. Did he see something on his iPad that scared him or made him sad? Is it the ghost that lives in the guest room? What is he feeling? Is he intuiting something? Is this a delayed reaction to something that happened today? Is he worried about his brother? Is he thinking about me getting mad at him for splashing so much water out of the tub during his bath tonight? It took two towels to mop it all up and he thought it was funny, or he at least laughed when I got angry. Hell, I don’t know. All I can do is pray, I guess.
Please God, please God, please God, please God, please God, let him be OK. Let him settle down and not feel pain. Let me know that he will be OK. Please bring peace and comfort to him. Please. Please.
I know we have to hurt sometimes. I know we all get sick, I know we all have to cry. But not having anyone understand our pain of whatever kind must create a whole separate sort of agony. Does his experience, whatever it is, ever really register as real if he cannot have someone know what it is they’re witnessing happen to or within him? I am his witness, yet I don’t know what I’m supposed to reflect back to him. I can acknowledge that he’s upset, but I don’t know how to specifically validate whatever it is that’s causing the trouble. I don’t know what I’m supposed to have empathy for other than a generalized sense of his pain. That’s agonizing for me, and it must be crazy-making for him. How could he help but feel trapped inside his discomfort? This part of experience — the part where another person understands and acknowledges what you’re feeling — is something I can’t give him.
Oh, my heart.
Oh, his heart.
I lay there beside him, rubbing his back when he’d let me, telling him it would be all right, prayers and questions squirming against one another in my brain. He started to settle down. He inched closer to me and threw his arm over my upper abdomen, which is a bit out of character for him. He is physically affectionate but in a mostly fleeting manner. He hugs freely, but for only as long as it is his idea. His arm was flung over me and he nestled his head in the hollowed-out spot between my clavicle and breast.
I thought I’d start crying again, but held it in and concentrated on holding him. His breathing evened out, his body loosened and he slipped under the first veil of sleep, turning over as he felt me move my shoulder out from under him. He finally released one deep, extended sigh. I stood up from the bed and let go a sigh of my own, pulled the covers up around his shoulders and left his room.
I slipped back under my covers, worried and shaken. I thought about mind reading — how much of it we do as human beings, how much communication is unspoken and how much isn’t. I can generally know, because my son cries, that he is upset or that something is wrong. I can’t specifically know, because I don’t understand his language. As much as we work on communication, the subtleties that can never be relayed from touching a photograph with a label on an iPad are endless. Does he even know how much I love him when I can’t give him all that he needs or wants? Does he think I’m just ignoring him? I said another prayer that he doesn’t, that he would remain asleep, and that peace would cover us.
This essay was adapted from “I Dream He Talks to Me” by Allison Moorer, copyright (C) 2021 by Allison Moorer. Used with permission of Hachette Book Group, Inc.