Photo courtesy of Dana L. Davis
At 2 a.m. the sound of feet stomping on hardwood wakes me from deep sleep. My eyes flutter open. “Mom,” my kid whispers. “There are flowers on my floor. I’m scared. Yellow flowers. They’re moving.”
I sigh. So begins another day of living with a child on the autism spectrum. I know I should be sympathetic. Jump out of bed. Cue up my Julie Andrews accent and haul out my guitar. “You know what I do when I feel scared?! I simply remember my favorite things!” But my inner Fräulein Maria left the building years ago. The person who remains is tired, anxious and mostly heartbroken. I got no songs to sing. A lifetime battling my kid’s autism? I never would have imagined.
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I don’t whip out my guitar but I do follow my daughter to her room. I flip on the lights and assure her there are no moving yellow flowers on her floor. She’s not convinced. Defeated and exhausted, I let her crawl into bed with me.
By the time she drifts back into a snoring slumber, it’s 5 a.m. and I’m in a quiet panic. Cameron won’t be fully rested at school. This means her behavior will be worse than normal—and since her “normal” is already quite stressful for her teacher (who needs to verbally prompt and redirect her to keep her safe and on task), worse than normal is unbearable. Will she hit other students? She does sometimes.
Cameron’s medical diagnosis of autism came when she was 7 and a terror of a child. I say “terror” with love. Until she was 5, she slept only in increments of a few hours. When things didn’t go her way--, she had nuclear
meltdowns. (Cameron losing a game like Connect 4 could end in objects being hurled at family members and pictures pulled off walls.) She screamed at strangers if they got too close. She was overly clumsy and would
hurt herself. She ran into walls and utility poles; she tumbled down stairs and slammed onto concrete.
And yet, when family and close friends came around, she would put on her 10,000-watt smile and say “Hi, guys!” with curls bouncing as she hopped up and down excitedly.
Autistic? Ha. No one believed me. That’s because there’s a vast spectrum of autism, and the top-tier children—labeled high-functioning autistic—are verbal and can do quite well in familiar social situations. A day at the beach (the literal kind) might present the ideal environment for a “good day,” as we refer to them in our household. A blaring fire alarm, on the other hand, could result in sensory overload, causing violent reactions.
“Aren’t autistic kids the ones who don’t speak?” one friend would ask. “But she makes eye contact? I’m confused,” another would say. “Autistic kids are antisocial. She seems fine to me!” a third would declare. And, a personal favorite, “I think she just needs better discipline.”
As professionals struggle to clearly define the vast spectrum of autism and all it encompasses (and doesn’t), society has made up its mind that autism looks and sounds a certain way. My kid doesn’t fit the stereotype. For lack of a better way to put it, my kid often seems like a “typical” kid, if typical were defined by what people have come to expect. So what happens to parents when their special-needs child doesn’t appear to have special needs?
“I think somebody needs a spanking,” an older woman declared during one of Cameron’s epic meltdowns while we were standing at the post office. Kids on the spectrum struggle with reasoning, so long lines can be unbearable for them. True, post office waits are pretty intolerable for all of us—but we know our turn will eventually come up. An autistic child can’t reach this conclusion as easily and might respond with impulsive or even violent behavior. In this particular line, there was no way to discipline effectively, and I simply hung my head to avoid eye contact with the woman as I tried a little harder to contain Cam’s explosive temper. Are there shirts that say “I swear I’m not a bad parent—my kid’s on the spectrum”? I’d buy one.
Over the years, we’ve worked to scale down tantrums, but this often feels futile. While we take one step, another kid in Cameron’s class has taken 10. It seems as if we’re always playing catch-up. Because her capacity to learn isn’t disabled, Cameron is in a general-education classroom, not a special-education one. She has an IEP (individualized education plan) with resources to assist her, but no one, aside from select school staff, is privy to the details. So, essentially, no one knows she is on the spectrum.
“You must be the mother of Cameron,” one mother said to me when we first met in Cameron’s kindergarten class.
“Yes. I hope she hasn’t been too much trouble. Cam can be...” “Awkward?” she offered, cutting me off. I wasn’t gonna say that but, “OK.” She gave me a condescending smirk and said, “She’ll catch up. She’ll figure it out.”
As the days battling autism turned into months, and the months into many years, I fell into a deep depression and began to struggle with an anxiety disorder—not uncommon among parents of children with special needs. I’d been an actress since 1998, in both TV shows and movies, but my anxiety inhibited my auditioning and I couldn’t do the job I held dear. Money dwindled down to nothing, and friends began to fade away. Hope seemed lost.
Photo courtesy of Dana L. Davis
“I have a confession,” I said to one of the few friends I had left. “I’m overwhelmed. I can’t work. I can’t watch TV. I can’t read. I can’t even laugh. I’m lost.” I was crying so hard I couldn’t breathe.
“What do you do when Cameron sleeps?” my friend asked. “You mean if she sleeps?” “Yes,” he replied kindly. I sighed. “I write. It’s the only thing I can do.”
“Dana,” he said excitedly. “This doesn’t sound like a problem. If all you can do is write, then write.” And so that’s what I did. Writing became my meditation—creating characters, delving into dialogue. All the things I’d been missing, I was able to recapture through creating young adult novels. A 13-year-old girl who fell into a magical world. A 15-year-old time traveler. A 16-year-old overcoming the trauma of losing her mom to cancer.
Shaping these stories, guiding these characters through their arcs gave me a realization: Cameron and I weren’t suffering through autism. We were simply in the middle of our story. You know, the part where the hero is presented with a challenge and, on the other side, becomes brand-new? The dark night of the soul. The part where all hope seems lost until...hope springs anew.
“I hate you!” a young boy says to his mom while I’m shopping alone. He pulls at her shirt and claws to get away. “This is not OK,” she articulates. “You need to calm down.” “Not OK!” the boy repeats. “Calm down!”
Most would brand the boy a brat, but I note the repeating of words as something called echolalia. I watch him flap his arms and hands the way Cameron used to. For me it’s quite clear: He’s autistic. But in this moment, I connect to the mom. I recognize the pain etched in her face. I see the way she focuses on the floor to avoid eye contact with anyone. I sense her pain. I want her to look at me. If only she would make eye contact. “Please let her look at me,” I think. “Please.”
For some reason, she does. And I smile. It’s all I want to do. I give her my most genuine smile. And if my smile could speak, it would say this: “I think I know your story. It’s mine too. I don’t judge you. Or him. I understand. This does not define you. In fact, you’re the main character in a beautiful story. I believe in you. I believe in you both.”
Maybe my smile says more than I imagine, because for some reason her eyes well with tears. She smiles back.
Dana L. Davis is a writer of YA novels and an actor who lives in Los Angeles. She currently voice acts in the animated series Star vs. the Forces of Evil. She is the author of Tiffany Sly Lives Here Now and The Voice In My Head, coming out in May.