On a sunny day in October in my 28th year, I walked, sweating, into the early intervention building with a giant tub of Jack’s therapy toys under one arm, and two-year-old Jack screaming and flailing in my other arm. I called to four-year-old Henry to stay close to me in the parking lot. We were doing this because our life was in shambles. We didn’t know what to do with Jack. Normal life had bid us goodbye.
There was no receptionist at the desk when we walked in. I didn’t know where to find the sibling child care for Henry. I didn’t know where to find the structured playgroup for Jack in the labyrinthine hallways. No one seemed to be working there for me to ask. I didn’t know how much longer I could hold Jack, who was moaning and trying to slide out of my arms. If I set him down, he would run away. My arms burned and I held him tighter.
“We are here because we are desperate,” I wanted to say loudly to anyone who would listen. “Help, please.”
I abandoned the giant therapy box on a chair and found someone who knew where to find the sibling care room. I left Henry in an unfamiliar class, where he instantly found a box of toys and went to work, playing. If I didn’t have a Jack, I wouldn’t appreciate how amazing this was.
Screaming Jack and I resumed our search for the structured playgroup, which had become, in my mind, a last beacon of hope. When we found it, and I retrieved the giant therapy box and lugged it inside with Jack, there was no one there. The room was empty and dark.
I sat down on the floor mats of the motor therapy room. Jack wandered around moaning. A young woman popped in to tell me that the class had been cancelled today because the instructors were both sick. They had left a message on my home phone after I had already left to make the forty-minute drive. She was sorry. She apologized. She said we could stay and play on the slides and in the ball pit as long as we wanted. She looked at Jack fussing and at my desolate expression and asked, “Bad day?”
“They’re all pretty much like this,” I said.
Flailing Jack, the giant box, Henry, and I made our way back outside. I loaded everyone and everything into the car. As we drove, something that I had pressed down and refused to acknowledge before came loose inside me, with a ripping sensation. The optimism, the competence, the hope I had displayed for months was gone.
This was reality now. It was jagged and it hurt.
“What is that sound you’re making, mom? I don’t know what it is,” Henry said. Hoarse, gulping sobs rasped from me.
“It’s okay, buddy. I’m just sad.”
“I don’t like that sound, mom. It’s scary.”
*more racking, ragged sobs*
“I know, honey.” *gasp* “It’s okay.”
We spent a year and a half of our lives with early intervention. It became a lighthouse when I was floundering in the deep. It didn’t pull me onto dry land, but it did illuminate the landscape.
They didn’t directly teach me how to handle life with a disabled child. No one sat me down and forced me to come to terms with my new, harder life. They didn’t engage me in psychotherapy sessions to draw out my anger, or my fear, or my feelings of helplessness. Nobody made me journal about the challenges.
The growth was indirect. It was an environment of resources, a jet plane chartered to take me from our old life to the New World—a land of disabilities. EI was the flight crew.
The classes, the play groups, the parent training—they all helped me learn the lingo of the special needs world. The onslaught of appointments and classes caused me to begin the slow reordering of the priorities in my life.
A pretty house, play dates and zoo outings, caring about clothes, hosting friends for dinner: these things were once important to me, and now suddenly they weren’t. Now all I wanted was for my son to be able to communicate his basic needs: hunger, pain, happiness, frustration. My perspective began to shift from “this nightmare has got to get better soon,” to “this is the new normal; adjust your expectations.”
And then the best part happened. I met Stephanie, Mandi, Geri, Yolanda, Janet, and Rachel—other moms. They were young and beautiful. They were struggling like I was with a child who they couldn’t really figure out. They were new, like me, to the world of extreme behaviors, aggression, limited communication, sensory integration demands, and so, so many tantrums.
We got together outside of the structured play class for the first time in December at my home. Before that night, parenting had become cold and lonely. Now, I had friends experiencing the same kind of emotional whiplash. I had stumbled from a dark cave into a brilliant cavern of light, water, and glittering gemstones. They understood. They were living it too.
I also met Crystal.
She led the structured play class and taught parent classes about Floortime therapy, sensory integration, and creating an environment of positive reinforcement. Crystal had lost her first son to a rare metabolic disorder, and had just learned that her younger son had the same disorder. It would ultimately take his life, too.
As Jack wailed and tried to squirm away all through every class, Crystal sat by me, patiently trying ideas to help Jack cope.
Her own life was rife with grief and uncertainty, but she exuded a sense of calm.
She taught me how to see things from Jack’s perspective. She encouraged flexibility. Month after month, she worked with Jack and encouraged me.
Taking Jack to structure class never got easier. When he aged out of early intervention and transitioned to preschool, I hugged Crystal.
“You get it,” I said. “You know.”
We looked directly into each other’s eyes. Hers were sad and wise and saw me with compassion.
She nodded, “I do know.”