On a Wednesday afternoon at the beginning of February, I was at a support group for mothers of disabled children. Jean, one of the mothers, turned to me, one eyebrow raised, and said, “I didn’t realize he’s mentally retarded,” referring to my five-year-old son, Matthew.
We’d deposited ourselves on the floor with our children, among crumpled napkins and paper plates. Orange cheese curl powder crusted Matthew’s fingers and lips.
“What?” I asked. It’s not that I hadn’t heard or understood the words, nor had I taken offense. Or at least I didn’t think so. I’d just never been asked the question quite that way.
“Didn’t you just say Matthew attends the intermediate unit preschool?” she clarified, smoothing a napkin over and over again with her fingers until it began to tear.
“Yes, he’s mentally retarded,” I blurted. It was the first time I’d said that phrase out loud, and I felt that I was doing Matthew an injustice.
Today, people like Matthew are called developmentally delayed or intellectually disabled. I’ve always used these words freely—with my husband, my family, my friends. I’m even in the habit of inserting them early into conversation, to preempt people from puzzling over why Matthew behaves differently.
The words mental retardation, however, belong to a bygone era—one where children in tattered clothing rocked in corners of places with names like Forest Haven or Pennhurst. Surely those words had nothing to do with my boy, who was giggling as he threw odd puzzle pieces, shredded monopoly money, and plastic coins into a purple bin. I tried to imagine him in such an institution, and it induced a sensation of nausea.
I’d already been at Sherry’s home for two hours. The other mothers were preparing to leave, tossing plastic cups and paper plates into the trash. Matthew raised his hands and grunted, “eeehhhh eeeehhhh.” I bent down and scooped him up over one hip. He rested his head on my shoulder, and for a brief moment I was transported back to his babyhood, before his diagnosis, to what felt like a more innocent time. But the feeling didn’t last long. I could hear his physical therapist chiding me for carrying him, instead of insisting that he walk to the door. And though I was surrounded by mothers who should’ve been predisposed to understand, I worried they might judge me for indulging him.
A biting wind whipped our cheeks as we made for the car. Matthew clutched my neck with his soft arms. The headache I’d been nursing intensified. Not until I inhaled the clean smell of an approaching snowstorm was I able to relax the muscles in my face.
The heater in my old Honda rattled and wasn’t generating much warmth. What could I do to shift my mental gears? I decided I’d bake bread. That is, if I could install Matthew in front of a Baby Mozart video. I’d never baked bread before, but I’d been wanting to attempt it. I’d purchased flour and yeast several weeks ago, and they’d been languishing in my pantry. The single-mindedness of measuring ingredients, kneading dough, and watching the dough rise appealed to me.
As a kid, I was the problem-solver in my family. When my mother announced she’d no longer prepare dinners, I stepped in. At the age of 16, I shopped at the local Pathmark and cooked meals straight out of our Betty Crocker cookbook. I believed there wasn’t a problem that I couldn’t fix.
Twenty years later, I gave birth to Matthew. His rare genetic disorder didn’t align well with my inclination to problem-solve. I scheduled appointments with geneticists, neurologists, cardiologists, developmental pediatricians. None of them could answer the basic questions: Will he talk? Will he walk? Will he live independently one day?
I arranged for a slew of therapists to come to my home: physical therapists, speech therapists, occupational therapists, behavioral therapists. Each of them would evaluate Matthew and give me directives to carry out to improve him. Make him use every other foot when he climbs the stairs. Make him request a cookie, using his speech device, before giving it to him. Don’t let him eat with his hands. Give him a spoon. If he refuses to use it, take away his food until he does. Make sure his play is functional. Don’t let him take books off the shelf and put them back on. Tell him to bring one to you so that you can read it to him. You want his play to mirror that of his typical peers as much as possible.
At the beginning, I hungered for guidance. But over time, these edicts triggered me to see him as broken. And when I couldn’t repair him, I wondered if it was because I’d failed him where another, better mother would’ve succeeded.
I wondered if the other mothers felt as guilty and exhausted as I did. I fantasized about someone consoling me, saying, Oh honey, let the poor child be. Or, Did you ever notice none of these therapists are parents of disabled children? Let them walk a mile in our shoes before they tell us what to do.
Matthew settled in front of the television, and I began assembling the ingredients for the bread. Flour. Yeast. Salt. Water. Easy enough. Here was something I could manage. Then my mistakes started adding up. The recipe called for active dry yeast, and I’d purchased instant yeast. Instead of adding one cup of water to the flour mixture, I added one and one-half cups. Should I add more flour to compensate for too much water? I decided to leave well enough alone. The dough was already resting in a ball. Overworking it could change the texture.
My feeling of control was fraying, and my anxiety crept in. What if none of the doctor appointments and therapist visits were making a difference? What if I was spinning my wheels for nothing, depleting myself and irritating Matthew? The problem was I couldn’t give myself permission to stop “fixing” him if there was even a slight possibility that I could alter his course for the better.
I craved the support of others. Which is why, when I saw a flyer about a newly forming support group for mothers of disabled children tacked to a bulletin board at the Healthplex where Matthew received physical therapy, I tore off one of the tabs.
That first meeting took place at Sherry’s home, a large, nondescript, boxlike structure, which appeared frozen in time. Unlike the surrounding homes, no trees or plantings adorned it. A grass lawn bordered the property, but the scene looked as if a blight had prevented anything else from growing. A wide-bodied, two-toned blue van, dented on one side, languished in the driveway. It was the sort of vehicle the Flintstones would own if one of their children needed a wheelchair.
Matthew lumbered across the lawn, his braces slowing him down. He rang the doorbell, and Sherry, blond and sloping-shouldered, opened the door. Wearing a gray sweatsuit with a wet stain across her middle, she bent down at eye level to Matthew and said, “Hi.”
Autistic and nonverbal, he didn’t look at her or respond. Instead, he bounded into the house flapping his hands, which is what he does when he’s excited to be in a new environment. Sherry took the plate of chocolate chip cookies I was holding and said, “Come in.” Her good humor belied the fact that she’s a single mother of seven-year-old triplets. Dylan has cerebral palsy. Tyler is autistic, and Marissa is learning-disabled. A voice in my head shouted, If you think you have it bad, just look at Sherry’s life. Not the sort of comfort I’d hoped for that day.
Still, I couldn’t help comparing Matthew to the other children. Dylan slumped two inches from a large television screen, his breath misting the glass. Over and over, he rewound a Barney video and watched the same 20-second snippet. The elastic waistband of his pants drooped and a diaper peeked over the edge. What if Matthew was still wearing diapers at seven? A rising anxiety lodged in my chest.
Rectangles of notebook paper dotted the walls. On them, in a child’s hand, were written the words EXIT, STOP, FIRE ALARM. Tyler, kneeling on a kitchen chair, was cutting paper along a penciled line. Pursing his lips, he snipped. When he missed a line, even by an eighth of an inch, he crumpled the entire page and threw it into the center of the table. At least he’s able to spell and write words. At least he knows how to use scissors.
A clatter of objects hitting the floor in the foyer drew my attention. Matthew had overturned a large plastic laundry basket. Dolls with tangled hair, miniature plastic dishes, a snarled Slinky came to rest in what could’ve been a modern art installation.
“I’m sorry,” I said, making eye contact with Sherry.
She waved a hand. “Are you kidding?”
She had the wan expression of somebody who hadn’t slept in three days. I had the feeling that if a bomb had dropped into her backyard, she might welcome the interruption and curl up in a ball in the corner to get some sleep.
Chloe, a girl who looked to be several years older than Matthew, lurched toward me and yanked the barrette out of my hair. Her mother, Donna, dressed in a fuzzy cardigan with a pearl necklace, whispered, “I’m so sorry.” Then she chased after Chloe, but not before Chloe had snatched a headband off Laura, the mother of Joey, a spindly boy clutching a tattered board-book version of Goodnight Moon.
Betty lifted her son, Jonathan, out of his wheelchair and deposited him dangerously close to Matthew. She procured toys her son couldn’t reach. The position of Jonathan’s legs and torso reminded me of the woman in Andrew Wyeth’s painting Christina’s World. Like her, he portrayed a certain vulnerability—a physical defenseless that didn’t exist in Matthew.
Jonathan and his mom took turns playing Candy Land—an activity far beyond anything Matthew was capable of. My throat caught. More and more, I noticed that Matthew’s peers had mastered what he hadn’t begun to grasp. I wanted to talk about this feeling—with people who’d understand. I was tired of hearing admonitions like God doesn’t give you more than you can handle, or There’s a reason for everything. But here at Sherry’s house, there was no professional to guide us. And Betty wouldn’t understand, because Jonathan had no cognitive delays. His disability was purely physical. If someone had asked me that day if I would’ve traded Matthew’s intellectual disability for Jonathan’s physical disability, I would’ve given it some thought.
Matthew wore a turtleneck with tiny red, green, and blue dinosaurs I’d tucked neatly into his sweatpants. The hair at the nape of his neck curled over the collar. The remnants of his toddler belly contrasted with his thin arms and legs. He was throwing each toy back into the laundry basket, the sound of plastic hitting plastic delighting him. He didn’t know his play wasn’t “functional.” All he knew was that it was a thrill for him to be at Sherry’s house, where no adult shooed him away from delicate vases or picture frames, like at his grandparents’ house.
Sherry’s nonchalance about her splotchy carpeting, her smudgy television set, her walls covered in rectangular labels, the blinds that hung at an angle in her window, all had the effect of loosening me up. Nothing Matthew could do would faze her. Still, I didn’t feel I could leave Matthew’s side to speak to the other mothers across the room. What if he stepped on Jonathan? What if he figured out how to open Sherry’s front door and wandered away? I stayed put, resigning myself to little adult conversation. That’s when Betty asked me, “Where does Matthew go to school?”
“The Montgomery County Intermediate Unit,” I answered. Her eyes narrowed like she was trying to solve a math problem.
“They run an autistic-support classroom,” I added. Her eyes darted to Matthew.
“I didn’t realize he’s mentally retarded,” she said.
It would take years for me to accept Matthew’s limitations. He didn’t stop wearing diapers until he was older than Tyler on the day of the meeting. By the time he was toilet trained, I could reconcile myself to the fact that he was years behind his peers in reaching this milestone. But if someone had told me at the support group that day that Matthew wouldn’t be free from diapers until he was 10, I would’ve been alarmed.
The support group didn’t endure. I chalk it up to the fact that we were struggling to manage our children while attempting to make conversation.
I’d still see Sherry at the Healthplex on occasion when our kids’ schedules overlapped. The mere fact that she made it there week after week heartened me. We were still in this together.
Matthew is now 23, and he’s just learning to string a sentence together with the help of his iPad. I feel encouraged by his progress, instead of crushed that he can’t speak. He continues to grow.
If I could return to that moment with Betty 18 years ago, I know what I’d say to myself. Matthew was always going to be intellectually disabled. You couldn’t fix that. He was never going to form intelligible words. All the speech therapy in the world couldn’t alter that reality. But he could learn to use some sign language to communicate. And that wouldn’t have happened without your guidance. Having you as a mother would make a difference in his life, but not quite in the way you hoped. Remember the instructional video you made for him when he was 10? Using a doll, “Betsy Wetsy,” you showed him the proper way of sitting on the toilet, and washing hands. You tried to speak in a serious tone of voice, but you mostly laughed at the absurdity of what you were doing. Then and now when Matthew watches the video, he doesn’t care about the substance of it. He watches it because he takes pleasure in laughing with you, because seeing you untroubled and happy is one of the great joys in his life.
The morning after the support group, the dough had doubled in size. Snow blanketed the neighborhood. Our radiator clanged as hot water surged through its pipes. I placed the mixture in my oven and watched it transform into something that resembled bread. Its colors ranged from deep mahogany to golden brown.
When I took it out of the oven, the loaf bulged to one side. Not a picture you’d expect to find in a cookbook. In spite of that, it steamed when I sliced into it, trailing an earthy warmth. I slathered a hunk with butter and jam and handed it to Matthew. Before taking a bite, he made the sign for more by pressing his index fingers together. His confidence in my bread-making gratified me. I cut a second piece for myself and took a bite. Too salty and dense. But I relished the crackly crust as it dissolved in my mouth.
How I fretted about baking bread. Every step seemed so important. What I didn’t know is that the process is more forgiving than I anticipated. The wrong yeast and too much water didn’t ruin it. Four simple ingredients will become bread, whether you do everything right or not. The result wasn’t perfect, but I didn’t need it to be.
Debra Fox is an adoption attorney, founder of Story Tributes, and amateur dancer. She lives outside of Philadelphia with her husband and 24-year-old son.