Rowan Found Her Voice—I Found a Better Way
Twenty-five years ago I gave birth to the most amazing little girl in the history of the world. She was perfect in every way, and we were crazy in love with her. But Rowan didn’t want to be touched or held.
No child ever comes with a user’s guide, but in Rowan’s case, it was as though I had given birth to a tiny being from another planet. As exquisite as she was, she wasn’t comforted by being cradled or held close in my arms. She found her peace when I held her out in front of me at arm’s length, facing away from me while I gently rocked her back and forth.
While other children crawled and leaped through their developmental stages in fits and starts, Rowan struggled to find her way, alone in her own world. She struggled to find her voice, not speaking until she was three years old. Even then, expressive language was difficult for her. She struggled to make friends with children who teased and harassed her, but she couldn’t understand them, and they couldn’t understand her.
We lived in a rural part of Wisconsin, where no child in our school district had yet been diagnosed with Asperger’s syndrome. When the first children were diagnosed a few years later, they were all boys, because at that time it was thought that girls didn’t have autism.
No psychologist, physician, or occupational therapist had a conclusive answer about Rowan’s behavior, but they all told us the same thing. They’d never seen a child like her, and while they couldn’t tell us exactly what to expect, it was always ‘don’t expect too much.’ They agreed that she shouldn’t be given ‘too much’ stimulation, as that triggered major tantrums that took her hours to recover from.
While she had anxiety and meltdowns, I experienced sadness, depression, and fear that eventually turned to anger. I would think about Rowan from the minute I woke up in the morning to when I closed my eyes at night, loving her and worrying. Holding my breath trying to figure out how she could function in a world that wasn’t designed for who she was.
We’d been told that she wouldn’t be able to learn to read, so I became obsessed with learning everything I could find about the nervous system, patterns, embodied cognition, music and rhythm, imitation, social connectedness and anything that might possibly help her. Then Rowan and I started to play our game.
That game contained the seeds of MeMoves, a patented system that has helped thousands of children with autism. Each morning and night we would stand or sit facing each other. I sang a rhythmic melody with no words, and slowly and rhythmically moved my hands in simple patterns in front of my body, above my head, out to the side. She started slowly at first and then more easily imitating my movements, then my expressions, until it felt like there was something visceral and real binding us together, my heart to her heart. We kept doing it because it connected us. It was play, it was fun, and it felt good.
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We did this for about a month, and one day, while driving to the grocery store, Rowan suddenly called out, “Mama, Stop!” She was pointing at a stop sign, imitating me when she called out “Stop!” as I had done, many times before. I was thrilled and told her she’d done a good job. But she got mad at me, yelling out once again, “Mama, Stop!” louder and more insistent. She was clearly frustrated, as though I was not paying attention to something so simple and obvious to her. She continued to become more and more upset until she finally yelled at the top of her lungs, “S! T! O! P!”
I had been told that my daughter was developmentally delayed, that she would never be able to read, that she didn’t even know letters. But Rowan, my amazing, brilliant little girl, knew her letters. I was filled with chills and emotion recalculating everything that I had been told, everything I thought I knew. How could this be? What else was possible?
When we got home, we pulled out some books and sat together on the couch. My daughter, who didn’t want to be touched or held, leaned up against me. She rested her head on my shoulder as I held her close and we began to read.
It took years before Rowan finally received a diagnosis of Asperger’s, and we officially entered the dizzying world of autism, rife with factions divided by cause and effect. I don’t know why Rowan has autism, and I never hoped to ‘cure’ her from being different from other people. My only goal was, and always will be, to make her life a little easier and help her accomplish more than what was expected of her.
Rowan my beautiful girl from whom we were told to never “expect too much,” is now 25 years old and has autism. She is also a voracious reader and is comfortable speaking and reading Japanese. She’s a gifted writer and possesses a fast, curious and compassionate mind. She works part-time as a veterinary technician, with plans to specialize in behavioral and shelter medicine. Rowan has friends and work that give meaning to her life. She also has an exquisite, tiny dragon tattoo and an astonishing mastery of certain video games.
It isn’t easy to be a parent and even harder to be the parent of a child with autism. The life that I’ve been lucky enough to share with Rowan has taught me that the world is far more interesting and wonderful than I’d ever supposed. I learned that some of the most incredible people are far from neurotypical.
Nearly 20 years after Rowan and I first played our game together, I still work to help the families and friends of those on the spectrum to “find their children.” Whether they’ve received a diagnosis or are like me and have been advised to simply “expect little,” there are ways to reach and support our children. I’m very grateful to have found a way to connect with my daughter. Through all the misdiagnoses and confusion, we found each other.
After that car ride there were more difficult years before Rowan was finally diagnosed with Asperger’s, but that day I learned my daughter had a voice worth fighting for, a smart and curious brain, and the ability to grow far beyond the life that experts had predicted for her.
This article was featured in Issue 78 – Back to School Success