Growing up with Selective Mutism

black and white black and white depressed depression

The drive from Wellington, Florida to Chicago takes nineteen hours for a family of average luck.  Two days between the promise of a new adventure and the realization that I was seeing my house for the last time.  Four hours waiting for the mechanic to fix the U-Haul, which chose the middle of nowhere to break down. Five hours obsessing over the forgotten yellow book left in the closet.

This was before cell phones and Google, and the numbers in the book were my last link to the life I had always known. Amidst the chaos of packing, I hadn’t told anyone other than my neighbors that my dad landed a job in Chicago, and I was moving halfway across the country. I had no numbers memorized. I could barely remember the layout of the room where I wrote my first story, let alone someone else’s phone number.  Four houses. At that point, I had said goodbye to the fourth house I remembered living in. There were more before that, but this was the fifth move my family made while I was old enough to remember.

The pencil shook in my hands as I eagerly painted the paper with graphite. I had told Kayla I would write her when I settled into our new place. I missed her, and I missed my neighborhood. Chicago in August isn’t all that different from Florida. I hadn’t yet met December or the annual yearning that came each time white hell fell from the sky. But I missed days spent at the country club, and I missed the smell of the beach even though I preferred the pool. But more than anything, I missed having a friend. 

I had one friend through most of the early part of my youth, Chris. We met in Kindergarten at a small Catholic school near Royal Palm Beach.  His abuela always had homemade Mexican food, and he liked Power Rangers almost as much as me. I changed schools the following year, coinciding with move number three. The landlord of the house we were renting needed somewhere for his grandmother to stay, and my parents stray away from conflict.

We ended up in a dirt road town close to the orange groves, in a small, dilapidated house that ironically became the source of great conflict, as my mom vowed never again to let my dad choose the house.  A year later, we moved to Wellington. My mom got the house she wanted, and I still had one friend.  Then I met Kayla.  My neighbor.  I finally had a friend that didn’t live thirty minutes away, which is three hours in seven-year-old time. 

So I wrote. I wrote about my new house. I wrote about the road trip to Chicago.  But I mostly asked how she was doing. I wanted to feel connected to my old life, and this was all I had left.  I only knew her address because it was one number off from ours.  Connections come as unnatural to me as the synthetic stuffed animals that lined my bed and kept me company when I had no one else to talk to.

My sister had the luxury of talking to her Florida friends on the phone. But it wasn’t her address book and my lack of a phonebook that made the difference.  I didn’t do phones.  The sound of a ringing phone sent panicky waves coursing through my body.  I’d try to talk, but the best I could manage was passing the phone off to someone else.

Days passed, and my mom handed me a red envelope. I ripped open the seal and retrieved a letter addressed to me. The purple ink told me that I was missed, but life continued in my absence. I read it again and again. Then I found a sheet of paper and composed my next letter.

Since I last wrote, summer had ended, so I wrote about the start of the fourth grade.  I was used to not having friends among my classmates. I hadn’t had any since kindergarten. Kayla went to the public school. I went to the Christian academy. But at the academy, my sister attended the same school and my mom worked as an assistant.

Here, I was completely alone. I signed my name, meticulously drawing the seven letters in cursive, a habit that came from the intersection of the unsatisfactory in handwriting that my second-grade teacher gave me and the perfectionism passed down to me from my dad.  I slid the letter into an envelope, licked the seal, then closed and placed the letter in my dresser drawer for safe keeping.

In the months that followed, I would stumble across the letter every time I lost a book, needed spare change, or by the will of God decided to clean my room, and I would set it aside with a mental reminder to send it. I never did.  Years later it was still in the drawer. Three more moves and hundreds of misplaced books later, the letter is gone.

Having an adventurous spirit and a decorator’s heart, the idea of moving to a new house always excited me initially.  Thirteen bedrooms in twenty-five years made the moving process familiar. It meant more space and the opportunity to mix-up the design. And maybe we would be in one spot long enough for me to have a room I could remember ten years down the line as more than just five different bedrooms jumbled into one makeshift room in my mind.

But that excitement never lasts. It can’t last. Every autistic synapse in my brain tells me to fear change, to dread the disruption of my routine. Excitement turns to stress, which turns to anxiety, which turns to deep-rooted fear. Move number six came two years later. This time, we moved forty minutes away.  I had two friends at my second-to-last elementary school—Louis and Lauren.

Louis befriended me early on.  I was the new kid, and he made an effort to make me feel welcomed.  The second friendship grew more gradually. When I moved, we exchanged numbers and addresses. We were going to keep in touch. I saw Louis once the summer after I moved. That was the last time. Lauren, I never saw again.

But a few months into the new school year, a letter came in the mail, and I was excited to hear that Lauren had a good start to middle school. She joined the cheer-leading squad.  She liked her new teacher.  It was close to Halloween, and she told me about her costume and wanted to hear what my plans were.

With residual excitement, I answered all her questions. I put those answers into a letter, which went into an envelope, which went into a drawer where it died a slow death, wanting nothing more than to have its words read.

Ten years.  Ten years of selective mutism. Ten years of pointing at items on menus instead of speaking the words aloud. Ten years of abandoning the world of the spoken for the land of the written. Ten years of being the kid who used to pace back and forth around the neighborhood streets afraid to ring the doorbell, hoping someone would see me through a window and play with me as if that was the worst it could get. Ten years of sitting in the front of the classroom in complete silence, forgetting that I used to be the know-it-all who always had his hand raised. Ten years of having my abilities questioned by my teachers and students alike. Ten years of quietly waiting for them to eat their words.

Words have always been an enormous part of my identity, but it wasn’t until I was twenty when I realized how much this was true. It was the Tuesday after Thanksgiving, and I had spent the week in the hospital recovering from a spontaneous lung collapse, the second I had experienced that month.  The day before I left the hospital and discovered a classmate in my first college fiction-writing class had died the day before Thanksgiving of a drug overdose.

Our Tuesday, class only met for a few minutes, then we went to the campus café for an impromptu memorial hangout. I felt slightly relieved because it was my day to have my short story work-shopped, and I had been dreading it all semester. I didn’t like being the center of attention because I always found some way to make it awkward. The whole situation was made more awkward by the fact that my lead peer-reviewer was dead.

Sitting around the circle, a dark cloud hung in the air, but the intimacy was equally apparent. Seven hopeful writers suddenly bonded by someone who left too soon, one of us. We’d spent almost an entire semester together. A few had known each other longer. With such a small class size, intimacy was easy, especially since we spent the semester reading each other’s stories.

For me, I knew only what I had read in their fiction. Our teacher suggested we go around in a circle and say why we write. I envied the cocoa and coffee everyone had in hand, too anxious to stand in line and talk to the stranger behind the counter, but I focused on the question. Fifteen years of writing, and I never even thought about what compelled me to right as compulsively as I did.  My biggest passion. And I barely understood it.

“I like creating worlds,” Dani said.

Dane told an anecdote about all the first-edition books he’d collected in his four-decade lifespan, our mutual envy-induced snark that cut through the grief, and for a moment we forgot why we were there.

Eyes turned to me. I stuttered my way to an answer. “I write because it’s my voice. Talking has always been a struggle for me, so writing has been my main form of communicating over the years.”

Dr. Lively happily hummed her consent, “That must be why your voice is so strong.”

I didn’t realize it at the time, but looking back, the answer only told a single layer of a much more complicated story.  I never thought of myself as having a strong voice. Half the time it felt like I opened my mouth and nothing came out. I didn’t have a strong voice all the times I waited in classes for students to guess answers I whispered minutes beforehand. And I certainly didn’t have a strong voice when I couldn’t find the words to tell my grandma I loved her after her stroke.

Sixteen years of mostly unsuccessful speech therapy had made me hate the sound of my own voice. I never thought much of my writing voice either.  I knew those years of practice had made me a decent writer, but I wrote soap operas, nothing that would make you happy-hum.

I let myself find comfort in distance. Writing was safe if no one but me read it. An academic essay I could easily share, or maybe even a fictional story if it didn’t have much of anything to do with what was real about my life.  But the more personal the writing was, the harder sharing it became.  A class blog shielded by humor.   A stack of poems with no heart.  Two letters that held my happiness stuffed in a drawer. 

Thinking back, maybe the resentment I have harbored towards Illinois for sixteen years was a shield, too. Illinois gave me opportunities I would have never gotten in Florida. My parents both grew up in the suburbs of Chicago. My dad’s two brothers both live here, and half of my mom’s eight siblings do, too. I had the opportunity to form bonds with my extended family that I wouldn’t have gotten from occasional summer vacations to my grandma’s house in my birth town of Hilton Head. And when my grandma returned to Chicago after her stroke, I was there.

No. The resentment is real. I wouldn’t still lie in bed awake for hours on hours dreaming of returning to Palm Beach sixteen years after last laying eyes on the Florida coast. I wouldn’t explode inside at the mere thought of my sister partying in Miami. I don’t even party. Although my relationship with my family is closer than it would be had I never moved to Illinois, it reads like a lost opportunity– my cousin, Molly, crying from behind a laptop in China. My sister sobbing into a computer screen unable to talk because she hasn’t seen her cousin in six months. A would-be silent understanding that the last time they saw each other they were grieving Grandma’s death, and without each other to lean on, they didn’t know how to process their pain.  It’s Thanksgiving, and I’m the only one thankful. Or it seemed that way.  We hadn’t had a Thanksgiving without Grams in fourteen years, and all I can think about is how I’m surrounded by family, and I’ve never felt more alone.

But I’m thankful. I don’t miss Thanksgiving for anything. With one lung down, I broke the record for fastest meal, took my last bite, and then screamed bloody mercy and ruined everyone else’s dinner. But there was no way I was having dinner in a hospital bed. This year, my holiday curse had ended. It was a legitimate, Hallmark-recognized holiday, and I didn’t have a headache or a stomach ache. Hell! The food was good, and I could breathe. 

Still, I felt alone.  My voice failed me. I wanted to be a part of the close-knit family, but I had had better conversations with the ceiling above my bed than I had with my family. But I didn’t resent myself for growing suddenly quiet every time I was around them or ignoring my uncle when he asked me how school was for the umpteenth time. I resented them for not trying harder to reach out to me.

I resented them for a concept I barely understand myself. Reaching out? I’d burn my own words before sharing them with the world.  I gave up two of the best friends I ever had for forty-nine cents and a walk to the mailbox. I let myself sink into silence. Ten years with only myself to keep me company.

Sami brought me out of it. I decided to go to a small, local school. I thought it would be easier to make friends. The small class sizes would make the transition easier. I would have an easier time connecting with the faculty.

By senior year, I’d barely said more than three sentences to any of the teachers or students on campus and was left wondering if I would have been better off at a bigger, more-credentialed school if the end result would be the same. On the first day of my senior year, my habit of showing up to class an hour early paid off. 

Sami, a transfer student, walked into the music building in search of her first class, and I was the only one there. She latched on to me because she didn’t know anyone, and she had an interest in special education and had a pretty good understanding of autism.

After a while, I came out of my shell, as much as hermit crab could, anyway.  Ten years of silence and the girl who helped me find my voice again is out of my life. She forever changed me, and I let our friendship die out of inconvenience.  My last two links to real human connection survive on a tenuous bond of mutual hatred of beards, semanticists, and ugly shoes, bond built on the love of soap operas, and a shared moment in time where Dani and I immortalized a person who could have been the next Hemingway on the six-day anniversary of his death.

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One Response

  1. My 6 year old daughter was recently diagnosed with selective mutism. Constantly having to explain to her teachers and to other educators that she does not need to be tested for delayed speech development, and that she can read and write and engages in hour long, thought provoking conversations with me on a daily basis has been more a source of frustration than anything else. I have found that most people respond by telling me that I “just need to make her talk.” Or that, ” it’s not our fault she can’t answer the questions to show us she has mastered the material.”

    I have found that the level of ignorance about selective mutism and the lack of relevant and comprehensive information available is extremely disappointing. I appreciate your drawing attention to this highly misunderstood topic!

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