It All Makes Sense Now
Mommy, today's gonna be a good day.
I walked with them down the hall slowly, as if I was walking to my death. Dead Jen walking! I thought to myself with some sort of dark humor, trying to keep the dread from taking over. My stomach was sick and my body was cold. I tried to muster up strength and bravery for whatever pain lay ahead.
We entered an empty classroom where there lay a four-point board in the middle. Nothing else. Even with the blinds wide open, sunlight refused to pour in, as if the day knew to be respectful of my impending doom. I didn’t fight even though I knew something beyond terror was coming. I forced myself into a matter-of-fact calm. This was going to be bad. This was going to hurt—but I wasn’t going to let them see my fear. I was not going to give them the satisfaction of knowing my terror. My life flashed before my eyes. How in the world did this become my reality?
*****
Mom and I walked hand in hand across the parking lot into the mall. The year was 1979 and I was three years old. The local mall was a happy, thriving shopper’s destination. But for me it was a nightmare. Not five minutes into our trip, the floor beneath me began to shift and contort like a funhouse mirror. The items on the shelves had blended together into a swirly, whirly, blurry, enveloping fog. I felt like I was attempting to walk on an uneven surface that kept changing and morphing into new twists and dips. I tried to compensate and find my balance, but I couldn’t see through the fog in front of me. I clung to my mom’s leg, terrified the floor would swallow me. I closed my eyes and waited desperately to get out of there.
“What is wrong, Jenny?” my mom asked as I tugged on her leg. But I did not have the words to answer her. Once we left the chaos and got into the open parking lot, the ground started to settle, and the air cleared. After around twenty minutes of riding in the car, I felt like myself again.
This was a regularly occurring episode for me.
In my mind I desperately wanted to tell my mom about the swirly, whirly colors and shape-shifting floor, but I didn’t have the words. I was able to use words to express my needs and wants, but I had no words for my feelings. Especially ones as bizarre as these.
Looking back, it’s clear to me that my little brain and young sensory system couldn’t handle the busyness of the mall. The diverse-colored items lining the shelves, the sound of the blenders at Orange Julius, along with the mixed smells of pizza and gyros coming from the food court were too much. The swarm of people, each one coming with his or her own smell, sound, and color were simply staggering. My senses, in turn, short-circuited and couldn’t process the information I needed. To this day I still get overwhelmed in busy places; as an adult, however, I am able to understand why it is happening so I can manage it.
I was a happy and positive child. My mom recalls that every morning when she would wake me I would declare, “Mommy, today’s gonna be a good day.” My optimistic spirit was there from the start. I would later fight to preserve this precious gift from God.
When I was three, my mom taught me to read simple books. I fell in love with words. I was insatiably eager to read and spell new words so I could keep up with my two older brothers. Words made sense because language came with a set of rules. If you followed these rules you could read and spell even more words! I loved rules and structure. They made me feel safe. In no time, I was trying to read everything I could get my hands on. I loved getting my brothers’ church magazines and circling every word I knew. I wouldn’t cheat. I painstakingly circled only the words I could read, every “the,” “and,” “but,” and “God” I could find. Only words I knew—that was my rule.
This was just the beginning of the rules I would create for myself in an attempt to keep my world predictable.
During this same time, my older sister began attending the local high school. My mom and I would drop her off every morning. I looked forward to car rides. I loved to stare out the window, unfocus my eyes, and let the movement of the trees and houses relax my brain. The blur gave me a kind of high, as I would become super focused on a single point in the distance. I had a hard time looking away. I would go into another world and it was hard to bring myself back to the real one.
This was a stark—and welcome—contrast to my everyday experience with the chaotic world. One particular day, a street sign that we had passed many times suddenly came into focus. I could read it: “Not a Tough Street.” What did it mean? Then it hit me and I shouted to my mom, “Mommy, that’s not a tough street! We can go down that street!”
Being one to take things literally, “Not a tough street” meant to me that it was a safe street with no high school kids allowed. I was terrified of the high schoolers, who looked like thugs to me with their ripped jean jackets and cigarettes (this was the 1980s when students were allowed to smoke outside). I was so happy. The rules worked on Not-a-Tough-Street. My mom thought this was the cutest thing ever, but being a teacher and lover of words, she corrected me. She explained the sign actually read “Not a Through Street,” which had a totally different meaning. She congratulated me on my close attempt, and that became a story we enjoy to this day. I found a way to tell my mom my feelings through a misreading of a sign. What a gift!
By age five I was able to articulate more specifically, However I started to hide my strange sensory experiences. For example, the feeling of meat in my mouth had at one point become unbearable. I don’t know if it was the fatty feeling but I did not want to chew it nor swallow it. Instead of expressing that, I simply said, “I don’t like it.” That was all I could make sense of at the time. All my family knew was that one day I developed an aversion to meat. They couldn’t understand it, but my dad loved to cook so he would make me a separate vegetarian option. Vegetables didn’t have the repulsive texture of meat.
My favorite meal was Tender Tips. They were made of soy or whey protein and my dad would fry them up in a pan with seasoning. I loved Tender Tips! I couldn’t pronounce them correctly and I called them Pretend-a-tips—which is kind of funny since they were pretend meat.
After dinner, my job as the youngest child was to empty the clean dishes out of the dishwasher. For most people, this would not be a daunting task, but for me the feeling of the squeaky-clean glasses and dishes on my hands was too intense. The sensation was like nails on a chalkboard or styrofoam rubbing together. The feeling would shoot up my body and make me shudder. I loathed this chore. I would try every tactic to get out of it. It wasn’t that I was disobedient; it was that the sensations were too much.
I believed my mom would not understand that I found touching the dishes intolerable. Even at my young age, I had begun to realize that I was different. My family and friends did not seem affected by squeaky glasses, odd textures, and loud noises. Eventually I found a coping mechanism, which would become a common practice for me in life. To avoid that terrible feeling, I kept my hands wet while I was touching the dishes. Every three or four dishes I would have to re-wet my hands. This perplexed my mom. She would ask me why I kept doing this, but all I could muster was a shoulder shrug and an “I don’t know.” Why didn’t I just tell her? Why didn’t I believe she would understand?
I don’t know.
According to my mom, I was a very happy and outgoing baby. However, around the age of two I suddenly stopped wanting to interact with people and preferred to play by myself. My understanding is that age two is when autism starts to be noticeable. But my family didn’t know at the time that I would be diagnosed with autism.
I stopped letting people hold me, except my immediate family. I would scream and cry if anyone else tried to touch or interact with me. I remember hating it because it felt like I was being poked all over with a dull object. I felt suffocated and confined. The rough skin, the smells, the voices in my ears were terrifying and unpredictable. I just wanted my mom. She was soft and familiar and she spoke quietly in my ears.
My mom worried that I had developed an aversion to other people so she enrolled me in preschool. She thought maybe I simply needed to develop better social skills.
The start of a school year always means new shoes. I love new shoes! I remember specifically: she took me to get them at Thom McAn, a popular shoe store at the time. She was showing me all the cute little pink sneakers with bows on them, but it was too late. Something else had caught my eye. I spotted the most amazing pair of little brown construction boots and I knew they were mine. I grabbed my mom’s hand and said, “Mommy…’struction boots!” But to my dismay, she was not as impressed as I was. She gently tried to lead me back to the little pink sneakers, but I just dug in more. “Mommy, ’struction boots!” That was it. I was fixated.
My mom, being the incredible person she is, made me a deal. She said we would come back to the store the next day, and if I still wanted the boots, I could have them. I thought about those boots all night. The next day, sure enough, I was walking out of the store with my new boots on and they felt great! I liked the structure of them. The pressure around my feet and ankles soothed me and calmed my body. I had preferred boys’ clothes because they felt more comfortable to me and they never had itchy lace, bows, or sequins on them. They were soft, plain, sensible, and predictable.
Off to preschool I went. Only it didn’t go quite that smoothly. When I realized my mom was going to leave, I lost it. I was so afraid because I did not want to be separated from her. She was my safe place. I remember crying and crying in the beginning. Eventually the teachers told me that if I kept it up, I would be put into the baby room because I was acting like a baby. This terrified me even more. Eventually I calmed down and settled into the routine. I remember enjoying recess because I loved to be outside. I also liked naptime, even though I wouldn’t sleep, because it was quiet and dark and cool. Sweet relief for my senses. I remember struggling when naptime was over because of the transition from quiet back to all the activity. I dreaded it.
Dread would become a familiar feeling in my life. It would taunt me, it would be there to provoke me—just out of reach and out of my control.
