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How I'm Learning I Can Be 'Perfect' With Sensory Processing Disorder

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There is a famous video in my family, taking place at my first birthday. A beautiful summer day with people milling about the pool, a table of presents, and me, big cheeks sitting in an old wood high chair that had kept many babies out of their mothers’ hair. It still sits in my grandmother’s house, unused with a china blue pillow and matching rooster perched as guard. For my birthday, it was cleaned and sanitized in the expectation of my first time eating cake.

I’m sure my mother had taken much pride in the balloons and clown decorations visible on the now deteriorating film. In the pictures, she has her hair curled and is wearing a dress, despite it being a pool party, and my father stands next to her in a coordinating shirt. My dress brought the whole ensemble together. Oldest child. First moments. Everything planned and prepared to perfection as only a new mother can do.

The cake was placed on the tray of my high chair and my parents waited in anticipation for me to explore the bright blue frosting and plastic clown. I’m not sure why a circus was the backdrop for my party, or if maybe it is now the reason why I resent clowns and find them repulsive, but my mother had gone through a lot of effort to put everything in place. The cake was the crown, a full circus of elephants and clowns and a ferris wheel perched atop all the frosting. Buttercream Bakery in Napa is still famous for their awesome cakes, and we get éclairs whenever we have the chance.

The anticipation was short-lived as my diaper-clad cousin crawls out of the pool, comes over and grabs a chunk of my cake from the tray and waddles away, shoving the frosting all over her face, a trail of cake behind her on the lawn. The camera goes back to me, tentatively picking at the opened cake, curious, but as soon as my hands are only slightly dirty I reach for my mother and begin to cry, begging her to clean my soiled hands. Now they say this should have been the first clue.

Sensory processing disorder refers to the way the nervous system receives messages from the senses and turns them into responses. Previously it was called sensory integration dysfunction. This disorder wasn’t recognized for a long time, and was mistaken for autism in many cases. It creates motor clumsiness, anxiety, depression, and school failure. 1 in 20 children is affected by sensory processing disorder, creating dysfunction and disrupting daily life.

Usually it is identified in children, but at age 19 I was listening to my mom talk to her best friend as they eyed her daughter tentatively stepping on the grass and retreating quickly to her mother’s side, complaining of pain. I’d never seen anyone react like I did to grass. I’d been told I was overreacting and being sensitive, that maybe I was allergic to grass and should just sit on a blanket or towel even though I explained I could still feel it. Kaye was telling my mom about something called sensory processing disorder, and as she described it, I began to identify with what she was saying: not being able to wear shoes with laces, certain clothes that were painful, food textures that made her daughter cringe and pull away, stepping on grass.

I pulled my mom aside that night, curling into my grandma’s couch, trying not to cry. She listened half-distracted by my sisters bickering as I explained to her that I too felt the way Kaye had described, but she didn’t understand. There were many parts I was missing, she told me. No struggles in school. No clumsiness. No excessive meltdowns. “There couldn’t possibly be anything wrong with you,” she told me, stroking my hair so it framed my face better. “You’re my Mary Poppins. Practically perfect in every way.”

A year later, I sat in a psychologist’s office, explaining how I wasn’t perfect, how I was having many excessive meltdowns, and I clearly must have been broken. As we explored my issues, he softly asked, “Have you ever heard of sensory processing disorder?”

Anxiety can be good for people. It causes fight or flight instincts to protect us from potential danger. Goals are proven to be essential for success. A thought-out plan is needed to move forward towards perfection. The way our bodies process the world around us is for stimulation or warning. But when any of these is thrown out of balance, the results can interrupt typical functions. Too much anxiety causes panic attacks. Too many goals can lead to an immediate need for impossible perfection. Too much stimulation can cause breakdowns, pain, misunderstanding, anxiety, tears, and therapy sessions.

I never knew before seeing a therapist that perfectionism was a disorder that could be diagnosed. But he nailed everything on the head as I sat perched on the edge of his leather sofa, refusing to take off my backpack because I liked the comfort the weight of it brought me. He said I have anxiety caused mostly by sensory processing disorder and perfectionism. When he asked me in one of our following visits how I got my idea of what perfect was, I looked at him and said, “Well, doesn’t everyone have the same standard?”

“But if you like causing trouble up in hotel rooms and if you like having secret little rendezvous. If you’d like to do all the things you know that we shouldn’t do, then baby I’m perfect, I’m perfect for you. If you like midnight driving with the windows down, and if you like going places we can’t even pronounce. If you’d like to do whatever you’ve been dreaming about, baby you’re perfect.”

One Direction is a band I’ve been addicted to since the summer after my first year at college. My sisters and I went through stages from what made us beautiful to all our little things that made us lovable, until this anthem of being perfect for someone without being perfect yourself. Harry Styles was telling me I could be perfect for him if I liked going places I couldn’t pronounce and if I’d like to write break up songs about him. But I couldn’t cause trouble. That couldn’t possibly be perfect. Breaking the rules didn’t make someone perfect.

I turned the music up until I thought my car speakers would burst and drove up the canyon, fighting tears. What did this word “perfect” even mean? I couldn’t possibly be perfect because I drove to the lake at midnight last night and thought about the lights across the water, pretending I was really on a Norwegian fjord. I couldn’t be perfect simply because I loved secret meetings, laced with darkness and thrills. There couldn’t be anything perfect about me because clearly I was broken. My body didn’t process a touch of another person correctly, let alone shoes or a blanket or certain kinds of rubbery grips on mechanical pencils. That’s messed up, I convinced myself. That means I’m broken, non-functioning. No matter what Harry tells me, I’ll never be perfect for anyone.

For Christmas, my parents invested in a weighted quilt for me. It’s stitched into squares filled with something that feels like the insides of my old beanie babies and covered in minkie, a fabric that not only doesn’t bother me, but calms me. My mother is finally finding acceptance after years of battling the idea in her head. She has stopped telling me how perfect I am and has started calling me “wonderful” instead. And now my sensory processing has become a joke instead of a disease. Just last week, as we were talking of some of my high school experiences and how I had never snuck out, my mother quipped that of course I wouldn’t. “That would be breaking the rules.” She laughed. “My kid who never breaks rules and doesn’t like dirty hands? Shocker.”

Having my hands dirty is an immediate need for my body to panic. One day in second grade, I was sitting and swinging my legs, watching some of my friends run after each other in some kissing game. I didn’t like running – I could fall. And I didn’t really like girls – they talked too much about shallow things and didn’t know much about Harry Potter. A girl with my same name marched up to me, and I stood, ready to run. She was the bully and I knew she had a reputation of pushing others so they ended up with skinned knees and nurse visits. I needed to avoid that at all possible costs.

Doctors didn’t scare me. Three of my four grandparents are doctors. What worried me was being dirty. I don’t remember what she said, or what she wanted, or why she was mad at me. But I do remember moments later sitting in the mud, trying to get my hands clean of the dirt without wiping my hands on the dress because that would just get the mud on my dress. I sat helpless, telling myself it wasn’t good to cry about mud, and remembering my mother’s insistence that anything could be cleaned. It wasn’t going to be the end of the world.

A playground aide saw me and came to pick me up. She thought the tears in my eyes were because I’d been pushed, so I nodded, zipped my mouth shut and let her guide me to the nurse where they let me call me mom to tell her what happened. “Please come get me.” I begged. “I’m so dirty.” She refused, saying the baby had just gone down for a nap and the aide would help wash my dress out. “Mom, please. Please come get me. I can’t be like this until the end of school. Please. I’m so dirty.”

My sisters and I went to a One Direction concert once as a surprise from our parents. We spent the day shopping for new outfits and listening to every song they had released. We had seen concert clips on the internet and knew the whole lineup. As the boys gathered on a flying stage, we all lifted up our cell phone flashlights and the whole stadium lit up with white light, the noise settling to a murmur.

The lyrics were written by Ed Sheeran and we had them written through our mind by the many nights we had fallen asleep to the acoustic guitar. “I know you’ve never loved the sound of your voice on tape. You never want to know how much you weigh, you still have to squeeze into your jeans, but you’re perfect to me… You’ll never love yourself half as much as I love you and you’ll never treat yourself right darlin’ but I want you to. If I let you know I’m here for you maybe you’ll love yourself like I love you.”

Perfect. With all their flaws, it was possible someone could be perfect and could be loved by someone else. My sisters still haven’t stopped teasing me for crying at the concert.

I still talk to my therapist every week. He says there is progress, especially in my relationship with my mother. He asks me every week if I feel like I am still failing. I answer yes every week. There are long battles that dominate our lives. I tell my friends I can’t go out because I have other plans when really it’s because I’m anxious. I don’t talk in class for fear of being wrong. I feel guilty when I have to buy 50-dollar shoes because those are the only ones I can handle the fabric of without having a panic attack. I sometimes don’t get to all my homework, I don’t eat like I should and I get too anxious to go to the gym. So yes, I’m still failing.

Then he asks if I feel like I am progressing. And I answer yes. Every day, there are less panic attacks. Every day I practice touching different things so I’m able to handle more stimulation on my skin. And as the current One Direction song says, “We’ll always find a way to make it out alive, won’t we?”

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Photo via Thinkstock.

Originally published: April 17, 2017
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