And so this week’s moment of happiness despite the news.
Recently, we had to go to Olivia’s college to move her things home for the summer. Olivia herself has been home since spring break started in March. COVID-19 was just gaining steam then, and by the end of spring break, her school, like every other school, decided not to bring students back on campus. Olivia stayed home – her things remained in her dorm.
We worked solemnly that day to pack her up. I think all of us were remembering the day in the fall that we brought her and managed in just a few hours to turn an empty room into an Olivia room, filled with her personality and style. Now – we were de-Oliviaing it, and she hadn’t been in it for months.
And I kept thinking about how, despite this challenge, Olivia made it through her freshman year with amazing composure and strength and grace. Her grades: excellent. Solid friendships were made. She spoke up for herself when she needed extra attention or help. She had a feature article published in the literary magazine. She joined the music club, continuing to play her violin despite the fact that the school doesn’t have an orchestra. She excelled.
“Oh, Mama,” she said to me, “I feel like I’m someplace finally where I belong. Where I’m accepted.”
Moving Olivia’s stuff home, we quickly became, well, overstuffed. I redid her room after she moved out, so suddenly, we had double everything. Olivia lived amongst extra furniture and backpacks and artbags and boxes during the last of her online final exams, and then, without my asking, she threw herself into her walk-in closet and began purging. By the time she was done, my trunk and entire back seat of my car was filled with discards. And there were still more bags waiting in the hallway. I’ve already made one trip to Goodwill.
At one point, Olivia brought us a stack of her early artwork and stories. Nestled in there was a small photo book put together by the teachers in her Birth to Three program. Olivia started there because of feeding and sensitivity issues, and then the concern grew to autism. Michael and I both paged through the little book, and at one photo, we both froze. “Oh,” I said. “She’s come so far,” Michael whispered.
It is a photo we don’t remember. Autism isn’t a visual thing – you can’t look at someone and say with absolute certainty, “That person is autistic.” But in this photo…Olivia looks autistic. She is with Santa Claus, and she is totally turned away, her eyes averted. Her hands are in full stim. She’s talking Livvyonian to her fingers – the name we gave to the way Olivia used to speak, when she spoke at all. Mostly, she was silent.
She looks autistic.
When I went to college in the fall of 1978, I intended to major in special ed, with a focus on autism. This was pre-spectrum – not much was known about autism yet. In high school psychology, I read a book called Dibs: In Search of Self, about a boy who was autistic. I was enamored. In my first (and only) special ed class in college, I watched a movie about autism, and it showed something called dance therapy. A dancer mimicked an autistic child’s stimming movements and what happened was magical – the child looked up, locked eyes with the dancer, and leaped into her arms. She “spoke” his language. I didn’t stick with the major – I became a writer. But that scene has always stuck with me.
Then, in the year 2000, I had Olivia. She was my fourth child, and clearly, she was different. But I never thought autistic. She wasn’t the boy named Dibs. She wasn’t the boy in that video. When the A-word came up with her, both Michael and I resisted. As I sat in an appointment with her doctor, and as he told me that Olivia might always see me as no more than a block of wood, she played at my feet. But throughout the conversation, she tapped my shoe. When I looked down, she’d look full in my face and just beam.
I was not a block of wood. Olivia was there. She knew who I was.
You do things sometimes out of a sense of intuition, out of a deep knowing of what is right. Olivia was formally diagnosed as high-functioning autistic when she was three. We were told to take part in all sorts of services and therapies. I dutifully filled out the mountain of paperwork, and I mean mountain. I put it in its already addressed envelope, brought it to the post office, and mailed it. Weeks later, I found that it was lost – it never made it to its destination.
I looked at Olivia then, and she looked up from lining up her massive number of bright-colored counting bears and she smiled at me. This was a daily activity. Our house was filled, right after breakfast, with a straight-lined path of counting bears. It was what she did. It was Olivia.
We didn’t fill out any other paperwork. I remembered that long ago movie, with the dancer reaching out to the autistic boy in his own language, his own movements.
And so we reached. We listened. She told us in her own way what she needed and we provided. She learned language from television – we kept it on constantly. She learned from repetition – we repeated and repeated and repeated. She reacted to music – we put her in a music class, and later, when she demanded a violin in the fourth grade, she got one. We followed her. We listened and we watched.
Olivia burst fully into language when she was seven years old. Her speech therapist, as a reward for a good day, gave her chalk and told her to draw on the board. Olivia drew a story. They had to get her a stepladder so she could reach the entire board. And the most amazing thing – not only did she draw it, she jabbered it. Non-stop. At the end, the therapist took Olivia’s picture, and she stood there, arms upraised in victory, looking right at the camera. The therapist met me at my car that day, pulled me into the classroom, saying through tears, “You have to see this!” And there was Olivia, who calmly told me the entire story again. And smiled.
This week, Olivia was featured in the Waukesha Neighbors magazine. Her photo is on the cover and there’s a full article about her inside. At one point, Olivia said, “Our family motto is ‘Don’t give up.’ I was born autistic, for me personally, it has meant pushing through and showing that I am successful despite my diagnosis. I have grown from these struggles and I know I’m going to make it.”
She already has. From that moment of tapping on my shoe and smiling at me while I was being told I was a block of wood, she made it. There was never ever any doubt. Why don’t we remember that photo? Because we were already seeing past it. We saw her. And she was looking right back at us. Smiling.
And yes, that helps. Despite. Anyway.
