By Alicia Boyce
@aliciathewriter

My son and I were the only ones in the waiting room, aside from the two receptionists sitting behind glass windows. My eyes traced my son’s movements as he flicked his wrists and paced around the room with a slight bounce to each step. I glanced at the time before returning to my thoughts, fidgeting with the corners of the manila folder in my lap.

Each time I’ve given birth, I’ve marked the occasion ceremoniously by writing the child’s name on the tab of a manila folder. I would christen each folder with a tiny binder clip, which secured the new immunization record and freshly stamped footprints inside, before sliding it next to the other manila folders in a file organizer. To this day, these folders hold each child’s medical records, tests, scans, and hospital visits. One might think I’m an incredibly organized mother, but this was a system birthed from necessity—a habit I formed after my first child entered the world.

“You can come on back now.” My thoughts were interrupted by the occupational therapist popping her head out from behind a door. I reached for my purse, tucked the folder under my arm, and called for my son. We followed the therapist through the door and down the hallway, passing several other rooms and a small play gym before arriving at her room.

“Sorry for the mess,” she apologized as she slid some sensory activities to the side and made room for me at a small horseshoe table. She motioned for me to have a seat while she thumbed through the paperwork I had filled out ahead of time. 

“I can tell you know your stuff,” she remarked.

I gave a weak smile as I took my seat across from her. Whatever strength she saw in my knowledge of a diagnosis paled in comparison to the inadequacy I felt navigating the ins and outs of a diagnosis on a daily basis.

“It’s definitely been a learning curve,” I responded. I placed the manila folder down on the table in front of me, just as I had done for so many other evaluation meetings prior to this one.

***

If I were to place each of my children’s folders side by side on a table, one clearly stands out from all the rest. My son’s folder is thick and tattered. The edges are worn down from the constant friction of pulling it in and out of my bag as I carry it from one appointment to the next. The inside of the folder is covered with sticky notes, scribbled phone numbers, names of specialists, and terms to “google later.”

This is the folder of a child who has a label.

It’s the folder of a boy who has to work harder than most to accomplish the simplest of tasks, a folder filled with words upon words written by specialists and doctors who discuss delays, disorders, and diagnoses in a very clinical format.

I carry it with me to all meetings. Oddly enough, the visual representation of that worn-down folder packed to the brim and still going strong gives me reassurance that maybe I have the capacity to hold more and keep going, too.

***

I did the best I could to catch the therapist up to speed on the last nine years of my son’s life. She asked me questions and I gave her answers. She wondered if I had copies of previous evaluations, and I pulled them from the manila folder like a gun from a holster. This was not my first rodeo, but it was one of the first meetings where I didn’t feel like I was drowning under a sea of clinical terminology.

“This is all very helpful information,” the therapist assured me.

Then, she turned her attention to the responses I had given on the intake forms.

***

Intake forms make up a vast majority of the thickness of my son’s manila folder. When you have a child with a diagnosis, a packet of intake forms is sent to you before you ever make it through the office doors. Often, the packets include 10-12 pages filled to the margins with questions and surveys about your child’s entire life—from womb to present day. To fill out the forms even one time is mentally and emotionally draining. Unfortunately, each specialist requires you to fill out their own set of forms, which means repeating oneself multiple times in response to all the same types of questions. I often joke that I don’t have a baby book for my oldest, but I do have a folder jammed pack with all the details of his development.

Age he sat up on his own: 5 months.

Age he said 2-3 words: 2 years old.

Age he dressed himself: 4 years old.

However, once the rapid round of questions passes, things get personal. The tension builds in my body. It starts in my chest, like a weight pressing against me. Then it surges to my fingers as I begin to anxiously tap my pen on the table. I fix my eyes on the papers, but my mind wants to run far away from the task before me.

The questions are to the point and I’m told to keep responses brief on the very topics I’ve spent countless hours thinking over and sleepless nights praying about. They only want the facts. I’m given three lines to answer when my responses to each question could fill up a page and spill over the margins. I want to curse at no one in particular, throw the papers in the air, and cup my face in my hands. Instead, I choose to take a deep breath and put pen to paper.

Select the type of delivery: head first, normal, or vacuum-assisted?

Since I’m only allowed to recount my birth story from a selection of words, I draw a circle around vacuum-assisted.

But I want to add how I barely felt old enough to be a mother in the first place. I want to say how I labored for hours, trying as hard as I could to deliver my firstborn with my own strength. I want to say I avoided pineapple for my entire pregnancy, because I once read somewhere there was a chance it might harm the baby boy growing inside me. I can’t help but wonder if I’m to blame for the diagnosis he’s received. I want to ask (but I also don’t want to know) if there’s something I could have done differently.

What are your child’s hobbies and favorite interests?

I list out playing with LEGOs, drawing, fishing, and Roblox—since that’s about all I can fit in the space provided.

But I’d like to talk about the time my son, who’s often not expressive, drew a comic. One character looked curious, with an eyebrow arched upwards. Another had eyes wide open and mouth agape as he stared at something in amazement. A series of unfortunate (but humorous) events unfolded, leaving another character looking bewildered, his face sporting a furrowed eyebrow with a question mark above his head. I let out a genuine laugh while my son looked over my shoulder, then tears suddenly brimmed my eyes. It was the moment I realized my son understood emotions, even if he didn’t always express them. It was the moment I realized my son had a sense of humor, even though he couldn’t always articulate his humor fluently with words. That comic was like a window I could peer through and finally see the personality of my son.

What goals would you like to see achieved through our services?

I write about communication skills, self-regulating, and coming up with a treatment plan.

But I’d also like to see my son thrive. I want to know he can function in the big world without the accommodations afforded him at home. Will he learn how to break down big tasks into smaller, more manageable chunks? Will he figure out how to identify his own needs and name what he’s feeling? Will he learn to identify the emotions of others and respond appropriately? I’d like to see him make some really close friends—the kind of friends who will patiently listen to him formulate his thoughts, even if he has to start his sentence over a few times. My hopes and goals for him go far beyond the space provided for me to respond. Ultimately, I want him to know that the way God has created him—complete with labels and diagnoses and disorders—does not disqualify him from the specific tasks God has prepared in advance for him to do.

After answering the rest of the questions, both with written words and all the words I wish they’d give me room to say, I make a copy and slip it into the manila folder. It’s tempting to feel the literal and figurative weight of the folder and allow myself to spiral downwards into the deep abyss of “what ifs” and “if I had onlys.” But I won’t go there.

This is the folder of a boy who has persevered.

It’s a folder of a child who has to work harder at things, so he does, and he’s stronger because of it.

It’s a folder with words written by a mother who has learned how to advocate for the needs of her son.

It’s tattered and worn down, and so am I some days.

Even so, I’ll keep carrying the folder until my help is no longer needed. But the hard-fought achievements of a child and the unwavering determination of a mother represented by that folder—well, I’ll carry that with me always.

Guest essay written by Alicia Boyce. Alicia is the wife of one awesome husband and the mom of four well-traveled kids. When she isn’t drinking her thrice reheated cup of coffee while homeschooling, she’s writing extra long captions on Instagram. She's also the co-host of "It's Tea Time Somewhere" —a podcast for women who live outside of their passport country and want to thrive wherever God has planted them.