There were times when my tendency to quote others to convey my feelings landed me in a heap of trouble. As “grown-up” as I sounded at almost four years old, I still had my bottle. It was something I was absolutely unwilling to give up. The doctors were not concerned, and actually encouraged my parents to allow me to have it as long as I wanted since I ate next to nothing.
“Milk is food,” Grandma said. So why would I need to eat anything else? My father, however, didn’t share this view.
When he insisted that I eat the dinner my mother prepared, I, as always, refused. This time he persisted.
“You are going to eat it,” he said.
“Why?”
“Because I said so, now eat it!” I had somehow made him angry, but not as angry as he made me. Maybe he shouldn’t have played so much Billy Joel music around me; he should have seen this coming.
“You cannot tell me what to do. It’s my life!” I said. “Go ahead with your own life, leave me alone!”
I ran up the stairs, clutching the bottle in my hand.
My grandparents lived on the second floor of our two-family home. Grandma says milk is food. I don’t need to eat my mother’s food, I have my own.
This time Grandma was on their side. She wanted me to eat. I sniffed the pasta, I sniffed the meatballs, I sniffed the cheese, and then I retched.
“No! I don’t want your stinky cheese; I don’t need your stinky cheese; I have my bottle. Milk is food!”
That was the last time I saw that bottle, or any other one. So for the next year I lived on peanut butter.
There were times when my speech and comprehension appeared advanced. It may have appeared to my parents that I was being obstinate and difficult—that I only wanted my way. But the truth is I had no idea the real implications and meanings behind the words I recited from the song, My Life. It just appeared that I applied it correctly.
Since I was already able to read, I often used “scripts” to speak to people. I recited passages from books that seemed appropriate at the time. I sang song lyrics, or in this case, screamed song lyrics at others. I also repeated what I heard adults saying applying it to my situations haphazardly. Because I was smart, everyone assumed that the words were my own, my thoughts, and that I knew exactly what I was saying. I am sure I did not.
My grandparents owned a weekend home in Sullivan County in upstate New York, which was a three hour drive from our house in Brooklyn. Every Friday night right after my father came home from work we packed our luggage in the car and traveled upstate. As soon as we crossed the Hudson River and headed up into the mountains it started; they knew it was coming.
My eyes grew wide as I watched the mountains come into view. Soon the road would be going up and down. I waited for it.
As the car started driving on an incline I started.
“Up the hill.”
The other side brought a decline.
“Down the hill.”
A steeper hill warranted a louder voice, “UP THE HILL.” And a deep drop—a softer voice, “down the hill.” On our way, “up the hill,” my head leaned back so I could look up into the sky. On our way, “down the hill,” my head sagged forward to look down to the floor.
“The whole way there—you drove us crazy,” my mother said.
The only thing that ever changed during the trip was the volume of my voice. This continued for the rest of the trip into the mountains—for two more hours, each and every time we drove there.
These car rides into the country were worse for my parents if my Uncle Patrick came along. He made me sick. If he was sitting in the backseat with me, I would vomit before I made it to my hills. Soon, I rode upstate with my grandparents.
It took me a long time to figure out why my uncle Pat made me sick. He smelled like motor oil. No matter how many times he washed his hands the grease from working on his cars did not completely come off, and I could smell it. Even now, I cannot stomach the smell of motor oil. I will avoid mechanic’s shops at all costs.
My “up the hill, down the hill,” routine lasted for many years. When I grew older I learned to whisper it to myself, and avoid the smack that would inevitably come from the front seat.
Mom decided there was nothing wrong with me. I just wanted my own way; to be stubborn; to be “a little bitch”.
There is not a time I can remember that I didn’t have the need to feel and touch everything before putting it on, or smell something before eating it. It was not a choice; it was a compulsion. I had to, but the question is why?
On my sixth birthday I was happily tearing through the wrapping paper to get to my gifts. I already knew what was inside most of the boxes, because I hated surprises.
My parents had learned to take me to the store to pick out my own gifts because if I didn’t like the looks of something, I would not touch it. I was picky—about everything, but it was more than that.
Dad would take me shopping and let me choose a gift, bring it home and wrap it. I never complained about having to wait to open my presents, a week, or even a month was fine so long as I knew what was in the box before I opened it.
When it came time to open a gift from my godmother, I tore through the paper as usual, but I was already worried. I had no idea what that box contained. I needed to know—ahead of time. I carefully lifted the top off the box and peered inside.
“I’m not wearing those, take them back to the store.”
My mother face reddened. “You are going to wear them,” she said through gritted teeth. “Say thank you.”
“Thank you. Can you take them back?”
My mother was furious. She insisted that my godmother not return the shirts and that I was indeed going to wear them. I never did.
Several days earlier my mother and father had a huge fight.
“You always spoil her, and let her get her own way!”
Dad took me to Toys R Us to pick out a birthday present. We walked up and down the aisles looking for the Barbie head. Do you remember the Barbie head? Barbie’s head was bigger than my own, with long blond hair that cascaded over the shoulders. It came complete with brushes and make-up.
I wanted her—not to play with her of course, just to sit her on my dresser in my room. Maybe she would be another imaginary friend. I could arrange her things, brushes, make-up, and even give her a hat if it was cold outside.
“What is wrong with you? This is why she’s spoiled!” she yelled. “Twenty-five dollars for something she is not even going to play with.”
I will never forget my sixth birthday, and the venom that my mother spewed toward my father for allowing me to pick out my own gift—for spoiling me, for giving in, for letting me have my own way. Why did she hate me so much?
What was wrong with the shirts? Why did I dig my heels in and refuse to wear them knowing it would bring my mother’s wrath? Did I just want to aggravate her?
The shirts felt funny. I could tell just by looking at them. And they were multi-colored stripes—dizzying.
“You can’t tell how something will feel by looking at it. You never even touched the shirts before being nasty and telling your godmother to return them. You just didn’t like them,” my mother said. More than thirty years later she is still telling the story of what a nasty ungrateful child I was.
Even now when I stroll through a store shopping for clothing, which I hate doing, I go directly to the items that “look” like they will feel good. I shop by touching the fabric, running my hands back and forth over it, and then rubbing it on my cheeks. Sometimes, I look like a crazy woman.
If I get ahold of a soft blanket or furry throw pillow, I catch myself toting it around like a security blanket, especially if I am stressed, or in a large overwhelming store. I suppose I may have learned to shop this way—from my grandmother.
Grandma made my dresses. She made my hats, scarves, gloves, and sweaters for winter. I could not wear any store bought ones, they were scratchy and I tore them off. The wool made me itch. My skin became red
and blotchy, and I would scratch until I bled. Grandma’s clothes were soft.
Holding my hands, Grandma and I walked down 18th Avenue where I grew up in Brooklyn. We crossed the four lanes of traffic at 65th Street when the light said it was safe to do so—we followed the rules; walked past Da Vinci’s pizzeria on our way to the fabric store where Grandma bought her yarn. Sometimes we stopped along the way so I could go on the quarter rides sitting in front of the store windows. I liked to walk to the fabric store—the avenue smelled good.
I loved the smells coming from the bakery. Fresh baked Italian bread, and cookies. We always stopped for cookies—amaretto cookies. The smell of baked cheeses and tomato sauce floated out of the pizzerias. I liked how the cheese sizzled and the sauce bubbled on the round pies that came out of the oven, and then slid onto the pizza trays. I loved everything about the trips to the fabric store.
Grandma roamed up and down the narrow aisles searching for the right yarn.
“Do you like this one?” she asked handing me a fluffy ball.
I rubbed it on my cheek, nodded, and continued following behind her. Grandma went up and down the aisles until we collected enough of those tiny balls of yarn for my sweater.
“Making a baby blanket?” the woman behind the register asked.
“No, a sweater for my granddaughter” Grandma said, pointing to me.
The woman’s eyebrows arched upward like two arrows pointing up to the sky. I looked up wondering what they were pointing at. Why was she making that odd face?
“She has expensive taste,” grandma said, a smile spreading across her face, “just like mine.” Then she paid the lady with the arrow eyebrows, and we were on our way.
My new sweater would be soft. There would be no itching, no scratching, no tearing it off my body, and no tags!
“You tore out all your tags so I never knew what size anything was.”~ Mom
I did; I tore them all out—out of every piece of clothing I owned. If the item was tolerable, the tag had to go, because it was not. I knew that tearing the tag out of my clothing and leaving a gaping hole behind would get me into trouble, but it didn’t matter. There was no discussing it. I had no choice. The tag had to go!
To me, the hole left behind was a good thing. It was a mark indicating that I would wear the clothes—my mark of approval. I guess my mother didn’t see it that way.
Attempts to force me to wear clothing I couldn’t tolerate resulted in a naked kid. I didn’t mind being naked either, in fact, I preferred it.
Ripping my clothes off started as soon as I was able to wriggle out of my cloth diaper and take off running through the house. My mother thought she was fortunate; she began having babies when new disposable diapers were all the rage. It’s too bad that I could not wear them.
Even as an infant I was hyper-sensitive; I had tactile sensitivities. My skin blistered under the disposable diapers, so the doctor determined that I must be allergic to them. Allergies were used to explain away many of my sensitivities throughout my childhood.
If my mother forced me to wear the clothes that I didn’t want to wear, I would wind up taking them off and leaving them somewhere in the street. In the cold New York City winters, tossing your hat and scarf into the street to be rid of them makes for an icicle child. I think that my mother would have just let me freeze until I learned to not throw away my mittens, but grandma didn’t want me to get sick. She continued to make my winter bundles.
I was not the most organized child; actually, I was a mess.
“You would lose your head if it wasn’t attached.” ~Mom
She was right. I lost everything including my grandmother’s handmade hats, scarves, gloves, and sweaters. I lost them all the time. It is a good thing Grandma could knit very quickly and always had extras on hand. She spent hours and hours, usually alone, knitting away. I didn’t realize until much later how incredibly expensive it was to make my angora scarves.
Maybe she started putting tags into my things to shut my mother up, so my clothes would have a tag in them to write a size down on. Or, maybe it was so I could recover some of my hats—so the lost and found at school would know they were mine.
Grandma began sewing her own custom made tags on the inside of my things. I remember her designing and ordering the tags from a company that specialized in custom clothing items. The tags were made of a soft sateen white material. The baby blue embroidery (I liked everything to be blue.) said:
Especially Made By Grandma for Jeannie.
Now there was a place to put my name on my clothes, and yes—a size too.
Grandma carefully sewed each tag in by hand, weaving in and out of the fabric with silken thread. She made sure to sew them completely flat so the tag did not stick up to irritate my skin.
Chapter Three
The Princess, Her Socks, and Her Late Pass
“You tried on ten pairs of socks every morning before deciding which pair you would wear” ~ Mom
I hate socks. I hate the way they feel on my feet, the way they bunch up in my shoes, and how the seams rub against my toes when I walk. Socks make me hot. When I’m overheated the first thing I need to do is rip them off—now.
To make matters worse my mother liked to buy thin nylon socks trimmed with lace. Not many materials irritate me more than scratchy lace. The thin nylon socks made my feet sweaty. My feet slid around inside my hard patent leather school shoes. They were not good shoes for a clumsy kindergartner.
When I finally found a pair of socks that I could wear, they usually did not match. Mom insisted that I just didn’t like any of the socks, but if that was the case then why did I need to try each pair on? Why did I need to see how they felt on my feet? Wouldn’t I have just flat out refused to put them on because I didn’t like them?
By the time I was dressed, and my three year old brother was in the carriage, we were rushing to make it to school on time.
“You could not make Jeannie move fast.” ~ Mom
Every morning the three of us set out to walk the five blocks to school. We headed up the avenue in the opposite direction of Grandma’s fabric store. We walked past the pork store, my favorite candy store, which was still closed and covered with a steel shutter, past the bagel store, the Becker’s carpet shop, and across 61st street with the crossing guard waving us onward.
“Jeannie you’re going to be late,” Mom said. I had stopped short in front of the side entrance to the school. My mother turned to the right heading toward the schoolyard where the kindergarteners entered, and I turned left.
“You can still go in through the schoolyard,” Mom said.
I said nothing, stayed the path, and marched around the corner heading for the front entrance; Mom followed.
I stepped inside the door just when the bell rang.
“Good Morning, Jeannie,” a woman’s voice said from the small desk that sat just to the left side of the entrance. I kept walking.
My mother was still wrestling my brother out of his carriage when I started climbing the towering steps. When I reached the first landing I stopped and stooped down.
“Hurry up Jeannie, you’re late,” the woman’s voice came from below.
“I have to fix my shoes.”
When I was satisfied with my adjustments, I continued my ascent to the first floor, and marched to the main office.
I walked straight past the ladies behind the desk, around the counter, past the school secretary, and into the principal’s office.
Mr. Hiler was a huge man; he towered over me, his head reached almost to the ceiling when he stood up.
“Hello Jeannie,” he said walking out from behind his desk. He handed me a small piece of paper all ready and waiting for me. I hopped up into the seat in front of his desk.
“She still won’t come in through the school yard,” mother said. She was slightly out of breath from toting my brother up the stairs on her hip.
Mr. Hiler smiled; mother did not.
“Why won’t you come in thro
ugh the schoolyard?” he asked.
“She just wants to be late, “mother said.
“I have to see Mr. Hiler for my late pass.”
“You wouldn’t need a late pass if you went in the other way,” mom argued.
“I need to see Mr. Hiler for my late pass!” I said in a slightly louder voice than before to make my point clearer. Mom’s face turned red. Why does her face turn that color?
“It’s alright, Jeannie can come to see me whenever she likes,” Mr. Hiler said. “Now off to class, Mrs. Divine is waiting for you.”
I smiled, and walked out of his office scowling at my mother as I went by. Why didn’t she understand? She knows I have to get my late pass.
To my mother, I was just being difficult; I wanted to do things my own way. I had a mind of my own and no one was going to change it—ever.
The leaves dried up, snow fell, flowers bloomed, and days changed. My patent leather shoes changed into snow boots, and my boots to sandals, but the routine never changed. I marched to the front entrance, up the stairs to the landing, fixed my shoes, walked into the office, ignored the ladies, and drifted into Mr. Hiler’s office to retrieve my late pass. Then, and only then, did I go to see Mrs. Divine, my kindergarten teacher.
Mr. Hiler’s words, Jeannie can come to see me whenever she likes, proved troublesome for years to come.
Looking back I now know my morning sock routine was due to tactile sensitivities. I needed to find a pair I could tolerate. I know this because I am the same today, very picky about my socks. What about the rest of my routine? Was my pause to fix my shoes on the landing born from the socks and shoes being irritating? Why did I only fix them on that landing—every single day without deviation for the entire school year?
I could not stray from that routine. I suspect that it was the routine I adopted on the first day of school, and that was how every day of school thereafter had to go. Yes—I was late on my first day of kindergarten because of the rocks in my socks that no one could find.
Twirling Naked in the Streets and No One Noticed; Growing Up With Undiagnosed Autism Page 2
