How raising a special-needs daughter fueled my writing.
This was the moment everything changed.
I remember how the neuropsychologist, whose name I don’t recall, sat across from me and my husband in a nondescript office, the white walls covered with framed diplomas and credentials from top medical schools.
I remember the way he shuffled through the sheaf of papers on his desk, recounting a summary of our 4-year-old daughter’s medical history; how he picked up the poster depicting a bell-shaped curve, pointed with his pen, and said, “At the top of the curve, we have normal intelligence, and over here,” he pointed to the left-hand side of the image, “here’s where your daughter Jessica lands.”
He informed us that only 2 percent of the population had an IQ below 70:
“Jessica’s test score reveals this is not a case of your child having a developmental delay. She is profoundly retarded.”
His words hit me like a slap across the face. I gripped the edge of the desk in shock and rose, demanding that he retract his statement. My silent husband folded his arms across his chest, his gaze fixed on the table. The doctor remained still, his hands clasped. He hadn’t even examined Jessica; his assessment was based on a previous report. I wanted to shake him.
I was in deep denial for years, determined to find what I believed would be a “cure” for my daughter. Although I had a supportive family network, I was the one who had to cope with the daily emotional and physical demands of caring for a child with a disability. I dealt with doctor appointments, therapists, and school personnel. I advocated for appropriate school interventions and placements, all while working full time as a teacher.
Among the many challenges I had to face was dealing with Jessica’s specific disability. Although I worried that I’d not done enough to help her, I discovered writing about it helped me cope. It provided a sense of purpose. Every afternoon, after my students were dismissed for the day, I sat in my empty classroom and wrote short snippets about the slow-moving mayhem of my family life. Perhaps I had a story to tell.
The Shape of Normal: A Memoir of Motherhood, Disability & Embracing a Different Kind of Perfect is the book I eventually wrote to illustrate what life is like when you have a child with a disability, to share how it felt to be an outsider around parents of typically developing kids. It took years to see that Jessica wasn’t “broken.” It took years to understand that she did not need “fixing.”
It took years for me to realize that I was the one who needed to change.
Like any parent, I love my daughter and am proud of her. Also like for any parent, raising Jessica has brought pain, worry, and grief — in our case, grief over the loss of the hopes and dreams we had for our daughter, the recurring reminders of what we’ve missed out on. In my book, I wrote about my apprehension about Jessica’s future, whether I was doing enough (or the right things) to help her; about my guilt over the lost time with my other children, my spouse, and our aging parents; about my jealousy and resentment of those with “normal” children. I wrote about the weight I carried.
It can be extremely isolating to parent a child who falls so deep in the margins. I often encountered criticism and judgment from others who didn’t understand my child. Once, when I’d taken the girls to McDonald’s, Jessica had a meltdown about the ketchup on her fries. A woman stormed up to us. “You should control your child,” she said, pointing a finger at Jessica. “What kind of parent allows her kid to behave like that in a restaurant? She’s disturbing everyone in here.” Then she turned and walked away.
Whose kid hasn’t had a meltdown at a bad time in an embarrassing place? What parent has complete control over their child’s behavior at every moment? People like to judge parents. Did Jessica’s tears over ketchup make me a “bad” parent and the other woman a “good” one? Does being a good parent protect you from encountering difficult situations? I needed to explore the answers to these questions.
Six years ago, I retired from teaching and became laser-focused on completing and publishing my book. I enrolled in creative-writing courses to keep myself on track and eventually wrote over 30 drafts, slowly learning what worked and what didn’t. I constantly thought about giving up but told myself this story was important and that I’d never given up on Jessica. I needed to treat this book the same way.
I wrote for parents like me, to be the voice that said, “You are not alone,” to illuminate what it’s like to parent a child with cognitive disabilities and focus on the similarities rather than differences between able-bodied children and ours. The Shape of Normal is for anyone who has ever struggled as a parent, whether with the usual frustrating behaviors of tantrums and meltdowns or with the daunting reality of accepting and loving the child they have and not the child they wished for. I am reaching out to say, “Let’s carry this together, at least for these pages.”
Cathy Shields writes about parenting, disabilities, and self-discovery. In The Shape of Normal, she explores the truths and lies parents tell themselves. Her writing has appeared in NBC Today, Newsweek, Bacopa Literary Review, Grown and Flown, Brevity Blog, Mother Magazine, U Revolution, and Write City Magazine. Cathy resides with her husband in Miami, where they enjoy taking long bike rides and kayaking. Follow her on Instagram at @cathyshieldswriter.
