Finding My “Normal”

Kim Tucker

By Kimberly Gerry-Tucker

With kids returning to school, my early experiences come to mind and so does the longing for kids to be allowed to ‘just be’ who they are, with no one getting to decide what normal is.

Growing up, I never bothered looking at people long enough to see them as anything other than blurry models out of Matisse paintings; jumbled but interesting. I especially hated pictures of relatives hanging on walls. You could never avoid their staring gazes. I’d dash past the eyes; usually looking right into your own.

I also couldn’t sit in vinyl chairs, eat mushy things, flush the toilet when I was stressed (the guttural noise at times terrifying), step on the black parts of the linoleum, wear noisy “click-clack” shoes or take showers (as opposed to baths.)

For seven years straight I had the same thing for my grade school bagged lunch: One jelly sandwich, Fritos, and pudding (hot in the thermos), with some milk. I changed things up in high school and for the next few years had one orange, chocolate milk, and a cheese sandwich for lunch. I was proud of myself. It proved I could be flexible.

I did like the academic side of schooling. But balls would bounce off my face in gym. Not once did I ever consider it as a place to acquire friends. In fact, the others held their hands in front of my face, “Yoo-hoo? Is anyone in there?”

There was a girl in my grade school class who would kick me till I was black and blue because I did not speak. She couldn’t figure me out, so she lashed out. In addition to Aspergers, I’ve got a dual diagnosis of selective mutism. This means my oral speech takes a freefall down my throat like a runaway elevator. Every time that girl walked down the aisle by my desk, she casually, discreetly, kicked my leg, hard. After a while, I began sticking my other leg in the aisle too. I wanted both legs to get bruised evenly. I was telling my mother I was clumsy, falling down a lot, falling off my bike. She would never believe I was only falling down on one side.

When I was diagnosed with Aspergers around 2000, I was told by a peer that I would “feel a kinship, a belonging such as I had never known, with others that have Aspergers, and also with even the most severely affected on the autistic spectrum.”

Kimberly Gerry-Tucker "Metamorphosis"
Kimberly Gerry-Tucker “Metamorphosis”

This statement proved to be true. Long distance communication through snail mail pen pals has been a big part of my life since the 90s. It’s easier than face to face. I came to know a little girl in my neighborhood who was the age of five (she moved away when she was 12) who unlike me, had never had oral speech. This was not selective mutism. This was in fact her expression of autism. She knew a little sign language, so I learned a few signs too. But if you paid attention, she “spoke” in many, many ways; if you listened.

She had such unrestrained joy on her face when, in her family’s living room, she squeezed in between their big wooden entertainment unit and the wall, to access the heating grate so she could make sounds by running her hands along it. This was music and she had made it herself. I squeezed in there too, and she did not cringe from my close proximity. We made music together.

Outside, she liked to climb in between an old shed and a fence, where a discarded slide was wedged. She’d climb partway up, suspend there, lean back her head, and with the sun shining through the branches of the Maple tree, she’d sit there as long as she was allowed to, just watching the dappled patterns and the way they changed through the mosaic of branches when the sun shined through and the wind rustled them. Now her face was awe-filled and from afar, I recognized this as one of my favorite past-times as a child something I still adore.

I eventually realized there were people who understood me; in much the way I understood the little girl, not only peers with similar diagnoses, but people in the programs like the one I was a part of for several years after my husband died in 2005: The Connecticut Autism Pilot Project. It was Alison, from that program, who asked me to retrieve dusty (literally they were dusty) painted canvases from my closet to show her. Some had areas cut out and stored in an envelope. All were kept in the dark, unseen by anyone but me and my family who’d seen me paint them.

Alison led me towards developing my interests, passions, and talents and showed me that these were there all along, ways I was communicating and so I began to (reluctantly) share these expressions.

My interest in writing started young, on napkins, in diaries, on discarded paper plates. My Grandma was hearing impaired. She was a fragile woman with a playful air about her, thin wisps of white hair on her head and a cigarette always smoldering nearby. She always had a sly wink for me.

Kimberly Gerry-Tucker writing notes
Me writing notes to my deaf grandmother

We were so unlike. As a child I had an aversion all things smoking-related. Had to watch the ground everywhere I walked so as not to even step on a cigarette butt. I don’t think I ever have to this day. If I feel anything, through the soles of my shoes- a bottle cap, a pebble, I shudder.

Being adopted, this grandmother and I bore no resemblance to each other. I had very thick unruly black hair; and was a tall amazon even at age 12. She was my contrast: thin, short, frail. I barely spoke, and she couldn’t hear. Unfortunately, she could read everyone’s lips but mine.

I didn’t speak up, they said.

I didn’t enunciate, they said.

No matter, because we found our own way to communicate. I found a way to have a voice. I wrote her long sprawling notes in my little kid scrawl and she read every single word silently to herself, answering me aloud afterward.

In 2012, as an adult, when I saw the movie The King’s Speech I was near tears throughout it, as I could identify with the humility, anger, frustration, embarrassment, sadness and all the other mixed emotions that impaired communication can bring. I brought this to the attention of my speech pathologist at the time, the wonderful Judith Rosenfield, and because of my connection to this film, and the way in which I described my attachment to the inability to communicate when one wanted to the most- Judy renamed her facility “King’s Speech & Learning Center.” It still has that name to this day and I highly recommend her, she truly ‘gets it.’

What’s important to acknowledge for anyone with a communication challenge, is the perseverance needed; the strength summoned to face every day, the pep talks one gives one’s self, and also the importance of accepting help when one is by nature a true loner.

I admire fluent oral speakers, but I remind myself that they too possess fears and foibles. Speaking is an art. Tom Iland is someone who is excelling at this; and I am so in awe of him. I will never take speech for granted. When I was 12, I thought drinking a bottle of vodka would make me a “chatty Kathy.” It put me in a coma and I nearly died. My attempt to change my natural inclination toward silence nearly silenced me forever. I had to learn to accept my ‘biological make-up.’ Over the years, I would come to embrace it.
But it wasn’t easy? Is anything worthwhile easy?

Nowadays I can ‘help’ others behind the scenes, as I sometimes act as a consult to young college students studying to be teachers who work with children with developmental challenges and also with selective mutism.

Like my young friend I mentioned earlier, I wanted to sit on a rock in the woods in all my free time; and stare at the lacy tree canopy in its shades of emerald, celery, and pea green…above my head, rather than join the kids in their boisterous and noisy games on the cul de sac.

Now I know that that was MY normal, and that’s okay. I connect with nature. It fills me the way social engagement fills other sorts of people. With paints, with grout when I do mosaics, with cats, dogs, trees, I am filled. The ‘low battery’ light stops flickering. Too much social engagement? The battery dies and needs a recharge.

Taking a break to visit a plant
Taking a Break from Collage Workshop to visit a plant

Trees especially, I can hear them and feel them. My hands are never still. And neither is my thinking. Maybe my vocal cords have not been used as much as other people throughout my lifetime, when it seemed to matter the most; but my hands have been loud. Oh- there is such a thing as mimicking, or studying interactions, and developing a way to mask, “small talk” one’s way through daily social interactions (that seem meaningless), but that is exhausting and against my grain so it can’t be kept up.

Communication (and that can be through writing, or speaking or through art) connects, soothes, reaches multitudes, teaches, moves, inspires, and more. Anxiety is a cruel slayer of spoken word, of expression. Not having words makes you so vulnerable. But through the arts of writing and painting, I find expression easiest of all. With autism, people can listen with their eyes. And look with their ears.

Kimberly Gerry-Tucker "Blue Hand"
Immersed in Art

There are loud hands all around, busily communicating if your heart listens. Whoever said autistic people don’t use body language? And I’m not talking about when they’re masking.

Pay attention.

I am a student, a mother, a person who has tried to turn my natural strengths (writing, painting, attention to detail, researching, nurturing) into sustaining and rewarding activities and a job in software too. I had to learn to accept help before any of that was possible. I had to do so much that was beyond my comfort bubble, (my invisibly mime’s box) and I had to accept rejection a lot; and just keep going.

I have to think of the invisible box now, not as the mime forever palming it and trying to break through, but as a necessary go-to, like Wonder Woman’s invisible car always being available when needed.

I think of the clique of girls in high school who didn’t understand me, and the one who would always corner me when I was alone. She would say, “Are you gonna’ be a shy little bitch your whole life?” Or she would sometimes exchange the word “bitch” with “scared little rabbit.”

Through the arts, the uninterrupted flow of expression is a means to say simply, ‘Here I am. I exist.’ I am not shy. I am not scared. My expressions don’t match my inside emotion a lot of the time. I am autistic.

By the way, I’m strong enough now to take less crap from people. If someone kicked me, I wouldn’t kick back (that would be stooping to their level) but I would definitely find a way to communicate my displeasure!

Kimberly Gerry-Tucker

Kimberly Gerry-Tucker is an artist, QA tester, and writer. She is the author of Under The Banana Moon, living, loving, loss and aspergers/selective mutism. She resides in Connecticut with her pets and significant other Al and serves on the board for The Art of Autism.

2 Comments

  • Wow . . . This is an incredibly beautiful and poignant work of written art, thank you so much for sharing it, Kimberly. The flow, the details and images, and the deep insights into the first-hand experience of growing up and living as an adult on the spectrum–all very moving and thought-provoking.

    I especially liked these lines: “Anxiety is a cruel slayer of the spoken word, of expression. Not having words makes you so vulnerable. But through the arts of writing and painting, I find expression easiest of all. With autism, people can listen with their eyes. And look with their ears.”

  • Your post, although well written was stabbing and poignant to the point of a flashback. I was not for it! I am an older autistic dog — undiagnosed — but fervent in the knowledge I have gained of autism over a tough life as an Asperger’s. It is me, and I am finally home.

    The good part is I know where the fly is in the ointment. I know where to look, I know what to recognize quickly before the tragedy begins. I understand the quirks and bingles and scruples. The tics and needs for an order. The fastidious mind and high drawer art that I have demanded of my soul as payment for life this way.

    If I must be in hell sometimes then I demand that heaven allow me to see within… I must be the Gemini: Castor and Pollux. An emotional wreck with the visionary god.

    I feel strange in that knowledge sometimes outside of myself looking in, always objectifying to gain a closer truth to the knowledge of us. We are a separate species blessed and cursed by the lord of the universe because we can handle it, and our days as children allowed us to take the pain and make it into pearls to cast.

    Today when I read your post it was not the right day — my skin felt it was on backwards and I have been waking up on the wrong side of the bed this last week — my dreams give me the answers to my questions of a universe and then I forget them — and godammit my emotion are on the outside — everybody can see them, is nothing private anymore?

    And here I speak in this place?

    Your words and that goofy paint on your face broke the glass dam and I watched it flow out; ribbons of emotion — some endless, some short, some so very old from a boy who I must constantly talk to about his attitude towards himself. He feels retarded and believes what they told him so very long ago. I must be his father now that I am older and he has remained the same stuck back there in those short pants sometimes.

    The bullying was bad. It hurt me in so many ways, for I was a poor and small for my age — new to Canada and new in my Canadian school. With a uniform; a blazer with breast pocket insignia of the Saint, and short pants and high knee socks with the burgundy grey and black and white colours of my August teachers in an advanced catholic school back in Ireland.

    St Augustines was school for scholara. School uniforms: that was a requirement in catholic school back in Ireland in 1960. I was advanced for my age when I arrived in canada and so I was put ahead two grades in my new Canadian school, with bigger cruel boys and teachers.

    I sat at the front of the class, obeyant to the teacher who thought I should sit there so he might keep an eye on such a strange child and of course those evil-older-boys. My autism; my…Belfast accent brought explosions of laughter and ridicule that destroyed me. It was unbearable and brought on fugues of emotion and rage, detrimental to the situation. The threats by those bullies to do their homework for them brought terrible stomach cramps; the robbing of any money or valuables; the destruction of my rather detailed and handwritten and carefully finished homework — which I took great pride in and was my only solace in this teen hell.

    I spoke fluent Latin and Celtic, was an artistic genius upon their testing. And then I started to dumb myself down to be normal.

    The physical torture and constant bruising on my nipples from one student who towered over me and constantly twisted them, brought back emotions of loss and humiliation and weakness at such a small age, by your experiences with your kicker in your days at school, turned me in the former days into an angry and violent young man. And in the reading of your words, brought an avalanche of emotion that I wasn’t expecting and was ill-prepared for today…but that’s not your fault. For catharsis is a warm dark stranger who leaves a gift after the tears.

    Your story is a witness to so many millions of us that are laughed at, and bullied, ostracized and forced to be alone (and who also choose that safety) are giggled at by knuckle-dragging gym teachers who can’t seem to understand why you won’t have gym because you are hiding bruises on your nipples and showering in front of older bigger boys in their puberty, and me feeling embarrassed, modest and still a child.

    Finding normal? I gave up on that, it is not mine to have and I have stopped craving it, and choose instead to fly alone from now on in…I am singular, I am an individual of profound and honourable quality. And I am proud of myself.

    Friendless and creatively driven I will probably always be, gold refusing to be coins.

    I write poems now Kimberly, about my insight into life — I paint pictures on canvas and draw my dreams in a book, and play my guitars which, all of this I have taught myself. I explain the knowledge of the many lives I have spent here on planet earth. I tell the story of our immortality and fragile mortal coil; of our feet on the ground and our heads in the clouds.

    I throw away more good ideas in a day than I use, and I like to write — and have a lot of stories and song and poem, and find as you do, solace in that, a quiet garden of my making, a place in my mind where I go to think clearly. The place of the self, the true self; the place were the light shines with a different light than that sun we see every day.

    I thank you, Kimberly, it is nice to see those who could not be broke, speak as you have.

    I admire your courage. And so I will leave you this poem of mine s a gift.

    YELLOW FISH
    by Michael Burns

    I was painting ten paintings the other day. In the music studio and lost an idea among a pile of dead poems sitting on a shelf,

    it was a good idea!

    It was something about the sound a bird makes after a terrible storm;

    for the world is stilled and made over completely in that single solitary second.

    This is not the only world…by far.

    A thousand million universes compel the worst to be imagined…and the very best.

    And yet, there is still more.

    All-round and threaded on a string like pearls around my lover’s neck.

    This fake world stops as it does, at my ceiling, the real thing above it all, collides with it itself endlessly…and I am safe in this false cave.

    It all ended I feel before I was born.

    A subversive’s poetry sung by his revenant…

    from another dimension.

    A message in a lonely dream…a warning to the future ones “Beware all, pay attention. For the cancer of the universe draws near.”

    If not closed off and in a box…

    in hope that the future is not shut then forever, and exalted for the good, as good.

    Barred off, and running round, a fence, a paint peeled sign; for sale.

    Shutters closed, the door nailed shut. The weeds are long and the house is dressed in a veil of dust.

    Old newspapers cling to past-time walls, the monthly bills under a foot…heaped up flyers collect to a barbed wire fence around its heart.

    And echos fall back and to the boulevard of unleafed trees.

    Long shadows cast, and the sun is low, red and on that last day.

    There will be no tomorrow.

    A cat walks past that mouseless place, on the street where no one lives.

    Were, no one a has ever lived. A dream with no one dreaming it.

    I’ve seen this place within, and wake from it in…exhausted hurry.

    The last one again…time will move on slowly. At it own pace; and I will sleep it through another aeon

    Looking up, and I see the grey imitation and come to worry why I had not noticed this, long before.

    Or had pretended that I had not noticed.

    I watch the watchers watching, and they, unaware, that I am not really here but in the other.

    I will always be safe now…I know that,

    for I have come to the end of that long journey of fear, and there is none here but me.

    A tall woman, the most beautiful woman in the world; her breasts rose and slightly fell saying, “Summer is quick here, and we are cheated, like unrequited lovers…hours are stolen from us…and in the fall, a war for the soul continues and still the heart of a man beats on.”

    And then she sang it in a song.

    I looked out this morning and turned a deaf ear

    At the coldness, the din of a harvest assaulting my flowers.

    Wooden ducks gather at my back door, waiting for their messenger to return and say its time for them to leave; and the once-great migration will begin.

    And the few that are ancestral to those millions that once leapt into a granite sky,

    leave on time and in an orderly fashion, bit players in that grand play.

    A storm starting…rains that block the sky with clouds as thick as oily smoke, lightning moves through them like, yellow fish in a barrel of dirty water.

    The thunder yells to my ears about its power…and then it wanes and waits for his brother’s reply.

    I was painting ten paintings the other day. In the music studio and lost an idea among a pile of dead poems sitting on a shelf,

    it was a good idea!

    It was something about the sound a bird makes after a terrible storm,

    for the world is stilled and made over completely in that single-solitary-second.

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