Why is Seeing, Believing?

Filed Under (Adam, Anxiety, Behaviours, Communication) by Estee on 21-11-2013

I learned another lesson tonight. Adam has had a few difficult days. He was complaining last week that his ear hurt, and I thought maybe he had an ear infection. I took him to the doctor who suggested it could be his 12-year-old molars coming in. I was still worried; I thought the dentist told me they had already come in. A few days passed and Adam wasn’t eating that much. His body began to twitch and spasm more. Yesterday, he placed his body under the cushions of the couch, wanted to watch a Baby Einstein video (as opposed to Shrek or Wall-E) and I knew he needed comfort. These are the things he will do to get it. I then suggested a bath and he headed for the stairs.

Once he got to the front door, however, things were out of place. Adam spent time picking up his coat, and placing his shoes just the way he wanted them and did it again and again. He was stuck in his loop. Then all of a sudden, he layed down on the floor on his goose-down coat and began to scream, biting the fabric of the sweater that was laying beside it. The blood-curdling scream broke my heart. I sat at the top of the stair, where I was waiting for him, calm and quiet. “It’s okay, Adam. I’m right here.” Adam let out a few more screams, but they didn’t last too long. I called my father to come over as I didn’t know what was going to happen next. Grandpa is one of Adam’s favorite people and I thought it would help. But Before Grandpa arrived, I came down the stairs and sat at Adam’s feet. “I’m right here. It’s okay.”

“Okay,” he said in a distressed voice.

“Do you want to move to the couch?” Adam seemed uncertain, needing more of my help to get him there; he got up walked half way down the hall, then back, unsure of where he needed to land.

“Come to the couch,” I repeated. Adam laid down and I sat at the edge of his feet with my hands on his legs. “I love you Adam. Everything’s going to be okay,” I said in my Zen-mother voice. My entire body wanting to absorb the knotted energy around him. I smiled at him lovingly and he smiled back.

“Hand is hurting,” he said looking straight into my eyes.

“Oh, I’m sorry your hand is hurting!” He leaned back and then sat forward again.

“Hand is hurting,” he repeated, holding it out for me.

“Yes your hand is hurting. Do you want me to kiss it or blow on it?”

At that point Grandpa arrived, also quiet and calm in Adam’s presence. Adam lead him to the basement where they typically hang out together. Soon after he came back upstairs for a bath and went to sleep.

This morning on the way to school, Adam sat in the back seat in the car and declared, “tooth hurting,” while pointing to his front tooth. When we arrived at school I checked but couldn’t see anything wrong. Adam had a fine but reportedly cuddly morning with his assistant. She said he became increasingly twitchy. Adam had said “yellow” which is what he has learned from the 5-point scale which symbolizes levels of distress. His assistant immediately took him to the sensory room. Adam began to tell her that his back, bottom, nose, were hurting and indeed he had a nosebleed at lunch time. When I heard he was pale and sweaty, I decided to fetch Adam early from school. Upon hearing about this, Adam assumed that he would not be able to go to circus arts where he is coached in the trampoline and began to scream. I texted (much of this conversation was happening by text) his assistant to say no, we were going no matter what because he had been asking for it all week long.

Adam did well the first half of the session and then let out a yelp. His coach put him in the silk swing until he yelped again. It was time to go home.

Nearly in tears for the way my own body responds to Adam’s distress on the inside, Adam yelped again in my car.
“Adam, I need a word please. I don’t understand screams.” I was expecting protest but Adam was quiet. When we arrived home, he again had a meagre appetite, unusual after rigorous exercise. He again placed his body underneath the cushions of the couch. He then showered and then yelped in his room. I suggested we brush his teeth, and when we did I noticed that a tooth had broken through the skin.

“Oh Adam, poor you. You are in pain!” Adam smiled from ear-to-ear, probably relieved that I finally understood what he had been telling us all along. I hugged him.

“Tired,” he declared as he climbed into bed. “Daddy hurt.” I figured he wanted to tell his father that he was in pain.

“Do you want to call daddy now?”

“No”

“Do you want to see daddy tomorrow?”

“Daddy tomorrow.” That’s an affirmative.

So as I think this through, when Adam says he’s sick and many of us just think sometimes he says things that don’t mean anything, I consider how much MORE listening we all have to do. Why do we need proof? Why do we need to see a tooth is hurting to believe it? I’m not suggesting that people (or I) don’t listen to Adam,but that Adam seems to need a lot more time and affirmation to feel comfortable as he passes through pain. Even for all the words Adam mustered to communicate how he felt, to get help, we didn’t see it and we didn’t know quite what to do for him. It’s not that we didn’t try to be helpful, or that we didn’t go to the doctor, but we beat ourselves up about Adam and his “behaviour” almost to the point of wondering if it had any function at all. Another lesson learned: We don’t always need to see to believe and Adam did the job that we always tell him to do. He communicates like hell.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.