by Amy Mackin
We arrived early for our first group session at the Early Intervention center and waited in the reception area until everyone else arrived. Henry had been referred to state-sponsored services by our pediatrician when he was sixteen months old. Since then, a therapist had come to our home twice a week to provide speech and occupational therapy and to teach him, and me, some basic sign language. The therapist had mentioned several times that she thought a group setting would help the process along, but only now, four months later, had a spot opened up.
The center was located in a small strip mall and consisted of a single-level space, split down the middle, with an open play area on one side and offices and conference rooms on the other. The reception area and front desk straddled the two halves with a three-quarter wall that adults could see over, but young children could not. The play area had distinct sections—a reading nook with low bookshelves and beanbags to sit on, a flat rubber surface for ride-on toys, a corner with puzzles and building blocks, and an area with crescent-shaped tables for arts and crafts or snack time.
When the group officially started, Henry and the rest of the kids were guided into the play area, and I was directed toward one of the adjacent conference rooms. There was one long table that spanned most of the room, and several whiteboards lined an interior wall. Two large windows on the north side looked out over the weed-infested parking lot of a crumbling brick factory building that loomed beyond. Glass inserts on the south side of the room overlooked the other half of the center where the children played.
Parents entered the conference room intermittently and began chatting, but I was more interested in the activity happening on the other side of the space. I stood by the glass inserts and watched. Most of the children appeared to have a combination of physical and intellectual challenges resulting from disorders like Down syndrome or cerebral palsy. They all seemed genuinely excited to be there—pleased to play with the other kids and eager to engage with the adult staff.
Henry, on the other hand, had identified the darkest, quietest corner of the room within the first thirty seconds, grabbed a board book on the way, and secluded himself. He wanted no part of the interaction.
It happened to be that month’s parent-to-parent day, so once the kids were settled, the adults all sat down at the conference table. The program coordinator introduced me as a new member and explained that this meeting was conducted every third Thursday of the month to give parents and caregivers an opportunity to ask questions and discuss challenges relating to our “special-needs children.” The terminology took me aback. I didn’t consider Henry to have special needs; he was just a bit behind. His older sister Danielle had a speech delay that required some early intervention, too. She caught up with her peers within a year and went on to be a typically developing preschooler. Both my brother and my husband had speech problems as children. With this impediment running on both sides of the family, I wasn’t surprised that my own kids had similar issues.
As a social worker wrote out talking points on one of the whiteboards, the other mothers, fathers, and grandparents in the room commiserated about the lack of accessible playgrounds in our area and shared tips on where to find babysitters who knew how to adjust hearing aids, put on leg braces, or manage sleep apnea. I smiled and nodded and tried to empathize, but Henry had no physical disability that required specialized equipment, and he slept 10 hours straight—only waking in the middle of the night if he was ill. He was utterly exhausted by the end of a normal day and a breeze to care for in the evenings; he just wanted to be left alone after dinner. My husband and I hadn’t gone out together in more than two years, true, but that was more due to a lack of funds than a shortage of competent caregivers.
Henry could certainly be a handful during the day, and if I’d attempted to put him into daycare and gone back to work, problems would surely have arisen. But I couldn’t have trained someone to manage those situations even if I’d wanted to. You’d have had to possess a psychic ability to understand why Henry melted down when he did, if you weren’t already intimately familiar with his routines. Even if you were familiar, any number of things in a foreign environment might unexpectedly set him off—things that he’d never been exposed to before and to which his reactions were impossible to predict. At home, there were far fewer variables. Still, Henry would occasionally develop some new compulsion or order of things that eluded me for a time. On the occasions when I, the person who knew him best, finally managed to figure out what was frustrating him or what he needed, it seemed like a miraculous triumph—a success emerging from hours of careful deduction, trial and error. But I was sure that as his communication skills improved, these compulsions and their associated meltdowns would become less frequent and eventually disappear altogether.
The coordinator formally started the parent discussion. I kept quiet, content to just listen, but when the conversation turned toward specific therapies and opinions on the best practitioners in the area, the social worker turned to me and invited my input. I didn’t know what to say. Henry wasn’t communicating; I didn’t know why. He had no diagnosis and up until recently, I hadn’t even realized his developmental delays were all that serious. I couldn’t remember exactly how much Danielle was talking at Henry’s age, but many people told me that boys often developed on a different timetable than girls. My mother, a retired nurse, was convinced Henry was just a late bloomer, and my in-laws dismissed any concerns as foolish. “He’s perfectly normal,” they insisted.
“It’s some sort of speech and motor skills delay,” I told the group. “That’s really all we know at this point. We don’t utilize any special therapies or practitioners, other than his regular pediatrician and these Early Intervention services. He did see an ENT for ear infections, but he had ear tubes put in, and now that’s all cleared up.” The social worker offered a concerned smile that made me wonder if she knew something I didn’t.
When it was time for the kids in the group to have snack, an intern arranged portable plastic dividers to wall-off the play area. The kids were split into groups of six and directed to sit at one of three large crescent-shaped tables. A facilitator sat in the middle of each one but on the opposite side, flanked by a semicircle of children facing her. Our parent discussion hour was up, and we could wait in the reception area and read or check our phones—electronic devices were not allowed anywhere else on the floor—or we could sit in the now vacant part of the divided area and peek over the barriers to not only watch, but also listen to the interactions. We weren’t allowed to speak to our children or in any way try to gain their attention. “The kids need to do this on their own,” the social worker said.
I chose to watch, and I quickly realized that Henry had the most deficient communication skills of the group. The other kids seemed to know the words required for this activity and were working on better articulation, or they were mastering sign language instead. I wasn’t sure Henry even had the words in his head.
According to Early Intervention’s recent evaluation, both Henry’s receptive and expressive language skills were approximately a year behind—no better than that of an eight-month-old’s. A gap of an entire year was a lot for a child who wasn’t even two yet. To add to the frustration, his motor skills were also several months behind, making the physical act of communicating with sign language that much more challenging. Still, he moved around fine at home and played with little difficulty. He was never around children his own age and rarely around any other little boys at all; his social experiences were mostly defined by Danielle and her friends. This group session was the first true comparison I’d had.
A staff member pulled jugs of apple juice and water from a nearby storage cabinet and placed them on the tables. Child after child said “drink” or signed it, and the facilitator responded by pouring a few tablespoons of juice or water into small plastic cups and handing them out. But Henry grabbed the whole bottle of juice and pulled it toward him.
“No, no,” the facilitator said firmly as she took the bottle back. “Tell me what you want, Henry.”
He reached for one of the plastic cups, but the facilitator pulled it away. Henry banged on the table in frustration.
“Tell me,” the woman repeated.
Henry glared up at her, his big blue eyes filled with indignation. I imagined him thinking, Listen, you dimwitted cow, what do I have to do to make you understand that I want a drink? Is reaching for the bottle not obvious enough? Grabbing the cup isn’t clear? The apple juice turned into Jack Daniels in my mind, and Henry morphed into a talking baby making inappropriate adult-like comments in some ridiculous family sitcom—a talking baby who no one but other inappropriately adult-like talking babies could understand.
When this scene became so unbearable to witness that even these dreamed-up scripts failed to distract me from the reality of the situation, I silently pleaded with him, hoping some sort of parent-child telepathy would allow him to hear me. You have to conform, Henry. You have to behave like everybody else so people don’t have to work so hard.
But inappropriate talking baby images and silent pleas aside, nothing changed. Henry didn’t say or sign a word. While the facilitator put away the juice and crackers and the other children picked up toys to a prerecorded clean-up song, Henry remained at the table, banging his fists on it with such anger I thought his knuckles might bleed. Clearly, he was not going to recover from this injustice soon enough to participate in whatever other end-of-session rituals were scheduled.
“Can I get him? Please, can I get him now?” I yelled across the room. I was about ready to leap over the barricade like some rabid mommy ninja when the facilitator nodded to another employee, who then pulled one of the modular dividers back. I descended upon the table, picked Henry up in one swift swoop, and held him tightly against me. “I’m sorry,” I said, as I marched out of the building with my inconsolable toddler. I don’t know if I was apologizing to the facilitator or to Henry.
Despite this less-than-stellar beginning, our Early Intervention therapist insisted the group was good for Henry and cautioned that if we relinquished our spot now we’d be hard pressed to get it back, so I agreed to give it more time.
For several weeks, the one-sided dialogue between the facilitator and Henry endlessly repeated itself until Henry began to cry or scream, sometimes collapsing in a defeated heap, with no understanding of why this woman wouldn’t give him a drink or a cracker or a block he wanted to play with. That was my cue. Once he started full-on crying and disrupting the entire group, I was summoned. I held him close, willing some of the tension to leave his body and sink into my own, but I felt otherwise helpless to improve the exchange. And guilty. I, his mother, was taking him to a place where he was made to sit and watch food and toys being shared with every other kid but him. A place where he was consistently pushed to create communication that he found excruciatingly difficult, but that seemed effortless and instinctual for his peers. A place where his mind was being manipulated to work in a way it obviously wasn’t designed to. In any other context, it would be deemed cruel.
After enduring what seemed like an eternity of this agony, but was probably closer to a couple of months, Henry sat in a chair at the snack table when the facilitator once again said, “Tell me what you want.” Henry lifted his left arm in front of him, made a fist with his right hand, then banged that fist forcefully against his left elbow—the sign for “cracker.” She gave him a handful of Pepperidge Farm Goldfish and then looked over at me where I sat in my designated corner, to make sure I’d been watching.
Henry scooped the treats into his mouth with no fanfare, never looking at me, never offering a hint as to whether he understood the significance of this achievement or not, but a surge of emotion rose through my body with such uncontrollable primal force that I had to leave the room. Tears blurred my vision as I hurried out the door toward the lobby. I thought my legs might buckle underneath me. The velocity and intensity of feeling was so completely unexpected and so impossible to hide that I felt like an irrational, inexplicable absurdity of a mother. I struggled to find a tissue in my voluminous diaper bag under the watchful eyes of a confused and concerned receptionist.
“Are you okay?” she asked.
“I’ll be fine, thanks,” I replied, avoiding her gaze. “I’m just going to step outside for a moment. I need a little air.”
I leaned against the glass of the front entrance, grateful for the spring breeze that still held a slight sting of winter in its gentle current. The muscles of my body were loose, shaky, and I slid down to a crouch, relenting to their hesitation. I held my head in my hands. Before that moment, I could never have imagined the unadulterated, insuppressible joy a few little goldfish-shaped crackers would bring me.
After pulling myself together, I went back inside and watched as Henry participated in the clean-up, gathering the puzzles and blocks and dropping them into their appropriate storage boxes. I left that day with a content child rather than a sobbing one, for the first time since we started the group, and I praised him all the way home. But beneath this joy lurked a terrifying thought. Would every accomplishment, every uttered word or gesture made, every milestone, no matter how small, prove equally elusive? It’s a question every parent of a special-needs child is plagued by, I suppose, the one thing we all have in common no matter what our children’s challenges are.
Henry went on to enjoy the group, but preschool, then primary school, brought their own set of difficulties, and I carried that question with me for a long time. I still do, albeit in a more minimized form. Henry eventually received an autism diagnosis that qualified him for continued therapeutic services, and he is now a happy, healthy teenager, but he will always be vulnerable to a world that hasn’t been designed for him, and the next steps—driving and college and work—will all bring their own unique hurdles to overcome. I still feel like a helpless observer when I watch my son struggle with one skill or another. I still want to alleviate his anger and frustration by absorbing it into my own skin, my own soul, where it can fester as it wishes and let my son be free. But unlike those early days, I now understand that I can’t carry Henry’s pain for him, and I can’t remove all the obstacles in his way; I can only try to give him the tools required for the job. It’s up to him to decide how and when to use them.
Amy Mackin writes about topics related to family dynamics, labor history, postwar cinema, and American culture. Her essays have appeared in The Atlantic, Brain Child, Literary Mama, Ploughshares Blog, Witness, and elsewhere. She received her MFA in Creative Nonfiction from Vermont College of Fine Arts and is currently a graduate student and teaching assistant in the American Studies department at the University of Massachusetts.