A singer lends her voice to a conversation about autism

A memoir of learning to listen
By Allison Moorer

Allison Moorer opens her new memoir, “I Dream He Talks to Me,” with a letter to her non-verbal autistic son, John Henry. The Grammy-nominated singer-songwriter writes, “I didn’t know how you would feel if I said these things to people about us, so I wrote every word here imagining you each reading over my shoulder.”

In doing so, Moorer addresses a question that is gaining traction in some circles: is it ethical to write about your children, especially if those children are disabled and unable to give consent? Some argue that autistic stories should be written by autistic people, that parents have dominated the conversation for quite a long time. But what about deeply autistic people, those who lack the means – expressive or intellectual – to tell their own stories? If we silence the parents of these children, who will tell these stories? In “I Dream He Talks to Me,” Allison Moorer proves it can be done with respect.

Moorer was in the middle of a song when she first realized her son was different. She struck a high note in a gospel hymn and her toddler burst into tears, overwhelmed by the sensation. She connected the dots: he was using fewer words, had stopped turning his head towards anyone who said his name. A few months later, John Henry was diagnosed with autism.

Like many parents facing uncertainty, Moorer sought medical advice, read books, tried diets and pursued therapies — anything that might help his son regain his tongue. Her experience was complicated by her divorce from John Henry’s father, musician Steve Earle.

Moorer wonders how she can be a good mother, given her limited ability to understand John Henry and his disorder. At one point, a doorman in his building looks at 6-year-old John Henry and says, “He’ll be fine when he’s 12, 13.” She wonders about the meaning of this benevolent and well-intentioned statement: “Where is the line between good and bad and who decides where it lies?”

Moorer shows how caring for someone with a profound disability can be a relationship defined by duality. You can both love your child and respect their unique outlook while wishing them an easier life, a life where they can express themselves and even live independently.

She writes, “I wish he could sit and turn a block in his hands all day, because that seemed to be what made him feel good.” But, sadly, it’s “not a block-turner’s world and I was going to have to do my best to get it out of block-turner island.”

Then you have to deal with a kid who pulls his hair out and butts his head, like John Henry does. “We’re told to walk away from those who hurt us, but I can’t and don’t want to run away from that person,” Moorer writes. Although she doesn’t explore it here, her father killed her mother before committing suicide, a tragedy she wrote about in her early memoir, “Blood.”

Parts of this book are written directly to John Henry, including the descriptions of the dreams that give the book its title. Others are written to strangers looking at it, “Dear woman in the Yes-I-know-it’s-a-dressing-room-for-women.” Others are written as a guide for parents who find themselves wandering this unfamiliar land, including “Grow Balls the Size of Elephants”.

Sometimes these shifts give the memoir a disjointed look.

Nonetheless, Moorer gives shape and voice to what it means to love and support someone you may never understand: after all, “there is no worse helplessness than that which a parent feels when they cannot not make things right for her child”. Moorer demonstrates the power of surrender – and the importance of asking the right questions: “Where is the line between enough and too much? Between what he needs and what we want, between helping and hurting, between just enough and diminishing returns? »

It is impossible to know if John Henry approved of his mother’s story or if he will ever be able to read it. But in this heartfelt book, Moorer pays a resounding tribute to its powerful impact on his life.

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