No more homework for me! The doctor said, “Only do as much homework as she wants to,” and I heard him! After that if I wanted to do the homework, I did. If I didn’t want to do it, I didn’t. But—the tics did not stop.
I squeezed my eyes shut tightly and wiggled my nose after opening them. I opened my mouth stretching my jaw open as far as it could go. These movements were always in the same order. For this series of nonsensical body movements, there was no explanation.
When I started blinking all the time, the doctor thought I should have my eyes checked. I needed to close my eyes anytime I walked outside, anytime I walked inside, and anytime the lighting changed.
The bright light outside in the mornings caused me to keep my eyes shut tight even if I was walking. Opening my eyes was painful. It didn’t matter that I walked into the light pole, fell down the curb into the street, or tumbled over piles of snow because I was not watching where I was going. I could not see where I was going, even if I did open my eyes.
The eye doctor could find no reason for my blinking, or squinting, or holding my eyes shut in the daylight. My vision was perfect; at least that is what his tests said. His diagnosis: I was allergic to the sunlight, and the florescent lights, and to the bright light bulbs.
I walked out of the eye doctor the proud owner of pearl framed, prescription tinted glasses. They made me look like a cross between a Martian and a bug. The tint was to protect my eyes from the light, and prescription lenses were precautionary. Just in case I did need to be able to see a little bit better. Those glasses made it worse. I could not see through the black tint, and they made the world fuzzy—even in the shade.
My sensitivity was attributed to my pale blue eyes. He said my eyes could not handle the bright lights because they were so light themselves. I suppose my blue eyes caused me to hear the buzzing in the light bulbs too?
Many of my strange behaviors were explained away. Rubbing my face on the dog, incessantly smelling the bubble gum, and sticking my head in the fence all had explanations.
Grandma bred German Shepherds. She loved dogs; she liked dogs more than people. I don’t blame her. When I was in the first grade Grandma let me choose one of the puppies for my own. I named her Mindy. Had she been a he, I am sure his name would have been Mork since I really liked watching Mork and Mindy on television. I imagined that I too must be from Ork, another planet.
Mindy followed me wherever I went, maybe because she knew that food was coming her way. I slipped her food under the table, and sat with her on the stairs sharing my pretzels. “One bite for Mindy, one bite for Jeannie.” I often referred to myself in the third person.
Mindy was my protector, and my comforter. When my parents fought, which was often, she stayed by my side. When dishes flew across the room slamming against the wall while my brother and I slept nearby, Mindy stood guard over us.
When I was particularly nervous or upset I used her as a pillow. She was soft, her fur was silken. I rubbed my face back and forth across her back. If I was sitting up I held onto her, and rocked back and forth while rubbing my hands up and down the tuft of fur under her neck.
Some thought my behavior was odd, but Grandma thought it was normal.
“I used to the do the same thing when I was a little girl,” she said.
I loved to sniff bubble gum, especially watermelon flavored gum. Grandpa owned a vending machine route—gumballs. Every night he sat in his golden-yellow arm chair in the parlor, which sat next to Grandma’s pink one, and put his capsules together. The machines that contained gumballs were easy to fill—just open the box and pour them into the top of the machine. But the plastic capsules that contained small toys and other prizes were not as easy. The capsules needed to be assembled.
I sat with Grandpa for hours in the evening time. The two of us filled the bottom of the capsule with a prize, snapped on the top, and tossed the finished ones into a big box. The nightly routine and repetitive motion was comforting. It gave me something to do, and I got to help Grandpa. Besides, it was always more peaceful upstairs in their apartment than downstairs in mine.
The gumballs were kept in the garage. I followed Grandpa through the driveway and into the backyard where he flung open the rolling garage door. There were boxes stacked high to the ceilings filled with toy prizes, hard candies, and gumballs. I searched out the green ones.
The green gumballs were watermelon flavor. I didn’t want to chew them; I only wanted to smell them. I loved the smell of watermelon gum.
“Your grandfather didn’t let you chew the gum,” my mother said, “that’s why you always stood there smelling them.”
She was partially right. He wouldn’t allow me to sit around all day chewing gum, not with my awful teeth. He was sure that if I took a bite into that hard coated gumball my teeth would shatter. He may have been right too.
I’ve always had awful teeth. Milk teeth, my mother always called them, although I don’t know what that means. The dentist said I had soft enamel. By the time I was four years old, I knew my dentist by name.
I had many teeth that had to be extracted probably due to a number of factors. I refused to give up my bottle, sleeping with it until I was over three years old, and the milk, I’m told, rotted my teeth. I had soft enamel—and bad oral hygiene. Brushing regularity was an all-out war. I hated the feel of the toothbrush on my gums, and the taste of the toothpaste made me gag. None of these reasons were why I sniffed the bubblegum then, or the reason I love to sit here and just smell fruity candy and gums (but not chew on them) now.
Some of the things that I did just could not be explained away; the explanations made no sense.
“You just wanted to see the red fire truck” ~Mom
My husband and I were driving home from a doctor’s appointment last week when a fire engine roared past the van. I gritted my teeth, squeezed my eyes closed, and put my fingers in my ears. The sound of that siren scratched my brain and made my teeth hurt.
When the engine was far enough down the road that the sound was bearable, I unclogged my ears and watched it roll out of sight. That’s when I realized that there was no way I was intentionally trying to make the fire truck come to our house.
I have a long list of strange things that I used to do as a child. Sitting very close to the top of the list is getting my head stuck in the fence.
We lived in a two-story, two-family house in Brooklyn. My grandparents lived on the second floor, rented the first floor, and we lived in the basement apartment. A tall maple tree stood in our front yard. My grandmother’s second-floor porch was enclosed by a black wrought-iron fence.
I often played out on Grandma’s porch, either while she was inside the small attached room knitting, or sitting outside sipping coffee. I don’t know what made me stick my head between the bars of the fence. Maybe there was something interesting in the front yard that I could only see by sticking my head as far through the iron fence as I could.
I wasn’t a baby, a toddler, or even a preschooler; I was already in elementary school. My head should not have even fit through the bars.
Grandma heard my screams and came running out onto the porch. I had managed to get my head through the fence, but I couldn’t get it back out. I was stuck, and stuck good. She called my grandfather, and neither of them could dislodge my head. My ears were in the way, so they called the fire department.
I heard the roar of the sirens blazing down 65th street, and could see them stop to make the turn onto 19th Avenue from my space in the fence. The neighbors came out of their houses to see what all the commotion was about. Doors opened, and neighbors walked out onto their terraces to watch the firemen dismount from their truck. Two men entered the front door to come upstairs, while the others waited out front.
When they came out onto the porch, one of the fire fighters knelt down next me. I saw the metal cutter in his hand.
“What are you doing? I asked.
“I’m going to get you out.”
“How?”
/> “I’m going to cut the fence—“
“Why?” I said whipping my head around to look at him. “Don’t do that!” To his amazement I was free, and walked back into my grandparent’s apartment.
Soon the neighbors came out only periodically when the firemen arrived. Instead of worrying there might be a fire, they assumed Jeannie was stuck again.
Chapter Seven
My One Friend; My Only Friend
“Children aren’t coloring books. You don’t get to fill them with your favorite colors.” —Khaled Hosseini
It would have been easier if others could have colored me in with precise, conforming colors; easier for them, that is. Trying to color me in was like coloring with melting crayons. You couldn’t press too hard without winding up with a puddle of something warped and mushy. My colors ran all over the page, poured out of the lines and meshed together to form colors no one had yet recognized. I was different–unique, bold, strong, smart, and hard-headed. I was simply me.
Efforts to fix me, or demand I conform to the normal world around me only resulted in my retreat. I retreated into my own world–further into the depths of my foggy existence. It is surprising to me how much I can recall, and more surprising still, how much I cannot.
I recall things about myself, situations, and places, but recall very few people. I don’t remember much contact with friends or family. They always just seem to be on the outside of my memory, on the fringes, fuzzy and faded out.
Looking back on my early years, and first school experiences, I realize that no one truly understood me. The standing assumption was that all my difficulty was the result of a stubborn mind.
In reality that is not far from the truth. My autistic brain is stubborn, unyielding, and immovable. My thought processes were difficult to change at best and impossible at worst. I simply do not possess the flexibility of mind to tolerate changes in routines, or abrupt changes in activities.
I did not simply want to do things my way; I could not do it any other way. Nor did I comprehend that there was another way to do things, or another way of being. I lived in simple oblivion–confusing oblivion—but oblivion all the same.
I didn’t understand the odd stares, or know to feel left out when children didn’t play with me. I was simply happy playing in my own world without anyone intruding or trying to change the way the game was played. It never occurred to me to feel lonely. It never occurred to me that I was different, or that the difference pushed others away.
I did have friends when I was young; although they were always built-in friends, friends that were in my life as a result of other situations. I played with the children of my mother’s friends, or the children that lived on our block. They were inserted into my life, always present, and so just a natural part of my being.
Making friends outside of my world was a completely different story. Those friends, friends made in school, or girl scouts, or dance class didn’t exist. I did not maintain or cultivate any of those friendships. In fact, I don’t remember having any of those types of friendships during this period in my life. I had no need for them–no need for more than one friend at a time. In fact, I could not tolerate more than one friend at a time—ever.
If I could not play with my friend alone, or if other children showed up, I simply left if I could. Otherwise, I would go play in a corner by myself. These are the times that I began to feel confused and alone. Never could I relate to, or understand the need, to play in groups.
Groups are overwhelming. There are too many things to focus on, too many people to listen to at one time, and too many people to ensure they are playing correctly. It’s exhausting.
I’ve always only had one friend at time; one person to confide in, and share my life with. This is as true today as it was when I was four years old. One friend was all I ever needed, and I discarded the rest.
Friends are time-consuming, dramatic, and exhausting. They take energy, and work. I have never been able to maintain casual relationships, acquaintances, or contacts. They fade quickly into the background like insignificant chit-chat.
My choice of friend is total; all or nothing. I am an all-the-way, all-the-time friend, or nothing at all. My friend will be totally immersed in my life, or completely cut-off.
Don’t fret over the lonely child with only one friend; I was not lonely. I had a friend who was always there with me, getting in trouble alongside me, and sharing the craziness life threw at us. I didn’t choose her, or her me–our mothers were friends. Both our mothers yelled, both our fathers drank–we were a perfect match; Vanessa and I.
Autistic children often show no real fears of danger despite obvious risks of harm.
This may be easy to spot in a young child who bolts for the street at a moment’s notice, or plunges into water with no fear of its depth without being able to swim. But what does it look like in an older child, one on the cusp of adolescence?
"Nannie" is what we call my grandmother on my mother’s side. I’ve never called her grandma; she is Nannie, my other grandmother.
Nannie worked in amusement parks for as long as I can remember; Rockaway Amusement Park, Rye Playland, and Crossbay Amusement Park. Crossbay Amusement Park was a small kiddie park on Crossbay Boulevard in Howard Beach. During the summer when I was 12 years old, Vanessa and I started working with her at the amusement park.
We learned how to operate the kiddie rides, strap in the children, and watch over them as they rode. I manned the motorcycles and Vanessa the boats. The sounds from the honking horns and dinging bells often left my head spinning.
The park closed at 10 p.m., and the last bus into Broad Channel ran at 11 p.m. We often got off of work and took the bus into Broad Channel with Nannie, where my uncle Alan met us and drove us on to her house in Rockaway Beach. On nights when Nannie was not working Vanessa and I took the bus into Broad Channel alone to meet my uncle.
One night after we closed down the rides we hung around the park instead of heading straight for the bus stop. Before we realized the time, eleven o’clock had come and gone, and we missed the last bus running over the bridge. There were no payphones on the corner, and no cellphones in our pockets enabling us to call for a ride, and we needed to get over that bridge. But first, we needed to get to the bridge.
With absolutely no concept of fear, we devised a plan–we would walk. I didn’t say it was a good plan. When a motorcyclist stopped to ask us if we needed a ride, we were ecstatic. I suppose two young girls walking down a deserted street heading for a bridge looked like they needed a ride somewhere. The problem was that we both could not fit on the back of the bike, and even if we could that was dangerous.
I didn’t want to leave Vanessa alone, but needed to get to the entrance of the bridge so we could start walking over it. We decided that I would go first, and Vanessa would stay hidden behind a bush. The man could drop me off by the entrance of the bridge, where I could wait, and then return for her.
Thankfully neither one of us were killed or kidnapped, and we were brought safely to the entrance of the bridge–the vehicle entrance. There was a walking path. A wire fence separated the road from the path. The only route to the walkway from where we were was over the fence. With no thought whatsoever the two of us began to climb the fence on the bridge.
We made it only half way up when we were blinded by headlights and deafened by the sound of a horn.
"What are you doing? Get down from there; you want to get yourselves killed?" My uncle was out of his car and pulling us down off of the fence before I realized who was yelling at us. I guess he figured when we failed to get off the last bus he’d better go looking for us.
It never occurred to me to just wait at the amusement park, or that my uncle would come to pick us up. In my mind I had to get to the meeting place, to the bus stop, and that was what I was going to do. I was a fearless problem solver.
When I get it in my head to do something, it is set in stone, concrete, stuck, immovable.
Many children
cannot perceive the dangers that lurk around them, the dangers that the real world poses. I often tell my own children why their actions were dangerous, and warn them of what could have happened. I can see the light bulb go on (most of the time) when they process what I say and perceive the danger in their actions. My light bulb failed to ever turn on.
I could not imagine that the motorcyclist picking up two hitchhiking young girls could be dangerous. I would not kidnap anyone, I was not thinking about running off with him, so why would he run off with me? I dismissed the lecture of danger; the fact that his intentions could have been any different than my own never crossed my mind.
I should have felt it was dangerous to roam the streets of Brooklyn in the middle of the night, but I felt no such thing. Vanessa and I often snuck out of our houses at nighttime and roamed around the neighborhood. When our parents found us missing in the morning we told them we left very early to go jogging. After all, joggers were out before the sun exercising, weren’t they?
Our parents accepted this jogging excuse. Had they ever realized that we’d roamed around all night long? My parents were too lost, too wrapped up in their own world. I was fortunate to have a friend who came with me to roam the neighborhood in the middle of the night. The times when she could not, I roamed alone.
The more unbearable life at home became, the more I wandered through the streets at night time. I always had difficulty sleeping. I could not fall asleep, and if I did, screaming parents often woke me. The screaming that woke me in the night became frequent, nightly, and then constant.
They fought about money, mostly. My father’s gambling problem was spinning out of control, leaving him broke and angry. The more he gambled, the more he drank; the more he drank, the more he gambled. Holes punched in our walls were a common occurrence when he arrived home from the racetrack.
My mother was no picnic either. She tossed plates at him, smashing them against the walls. The lack of money meant a lack of partying; a lack of alcohol; a lack of drugs. I escaped into the fog, into the quiet, into the night, and I roamed. Just before my twelfth birthday I decided that I was running away.
Twirling Naked in the Streets and No One Noticed; Growing Up With Undiagnosed Autism Page 5
