Twelve years ago, at 31 years old, I seemed to have all the components of a conventionally successful life: a handsome and brilliant husband, a promising career as an English professor at Yale, an adorable toddler and another baby on the way. But when, shortly before his third birthday, my son Benj was diagnosed with a host of special needs, the illusion of my perfect life fell away. Benj had been reading fluently, spelling complicated words, reciting swaths of poetry and doing math problems with ease since he was two, but now these gifts were revealed to be signs of hyperlexia, a developmental disorder often found in autistic children and characterized by early reading, challenges with verbal communication and impaired social skills. He had gross- and fine-motor delays and sensory sensitivities. He suffered from intense anxiety about changes of plan. Aloof, meticulous and compulsive, he spent hours lining up his blocks and toys in fastidious rows.
I, on the other hand, was affectionate, messy and creative. How could I support a child who was so unlike me? As we went from one specialist to another, I hoped that I could learn how to communicate better with Benj, even if I couldn’t completely understand him.
One day a speech therapist was teaching Benj how to ask for help rather than scream in frustration or shut down. As I listened to her repeat the phrase I need help, I realized that I, too, had a hard time saying those words. I was the one who helped. My father had struggled with depression, and I had been the sunny presence that buoyed and comforted him. In school I counseled and offered advice to my friends. I’d minimized my own problems, and all this caregiving and bolstering, this inveterate optimism, had taken its toll on me.
I found a therapist and shared with her my worries about Benj. For the first time ever, I revealed myself as I was: afraid, vulnerable, in need of assistance. What Benj did literally, I soon understood, I had always done figuratively. He marshaled his toys and became agitated if anything was out of alignment. I had married young, planned an academic career and been the first of my friends to get pregnant. I’d plotted things carefully and wanted all the pieces in place. Tackling my child’s special needs had inadvertently freed me from perfectionism and the need to micromanage my future.
The next few years brought great progress for Benj and me. Rather than accelerating my career, I slowed down, reflected and worked on accepting myself. I wrote a memoir exposing my dark, scared feelings—a huge step for someone who’d guarded her inner life and written only dispassionate essays.
Being Benj’s mother has taught me how to celebrate each tiny milestone (Benj accepted a hug! Benj asked his little brother if he’d had a good day!), how to let go and let be, how to not fret over anticipated disaster and how to inhabit the present more fully. Helping him understand that problems will be thrown our way and that there isn’t always one definitive right answer has deepened my own understanding of the essential mystery at the heart of life. No longer what the poet Theodore Roethke calls “time-harried prisoners of Shall and Will,” Benj and I live the questions together.
PRISCILLA GILMAN is the author of The Anti-Romantic Child: A Memoir of Unexpected Joy.
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