My wife called me on my way to work this morning. In the background, I could hear my fourteen-year-old daughter complaining, quite loudly, because I had left the house. Our conversation was punctuated by my daughter screaming, "Daddy!" from the living room.
Now, most of you with teenagers who read this won't be able to relate. Most teens would prefer their parents not be at home. In fact, most would prefer not to have contact with their parents at all until they are in their twenties. To use the vernacular of my generation: we're a drag.
However, our daughter Sara's teenage years are flipped one-hundred-eighty degrees. We live in bizarro land also known as opposite world.
Sara has autism.
Now, there are varying degrees of autism ranging from difficulty with social interactions all the way up to a complete detachment from the physical world and an inability to communicate. Our daughter falls somewhere past the middle of the spectrum: she can speak in simple sentences and she is well grounded in reality 90% of the time.
Occasionally, she goes off into a cartoon land. We will hear her carrying on conversations with Caillou, Winnie the Pooh, or Dorothy the Dinosaur. It's a world where we might recognize the landscape, but where we cannot follow. When she ventures into cartoon land, our job is to act as a beacon, a lighthouse to guide her back home.
"Sara, snap out of it. Come back to Mommy and Daddy," we will say. Her eyes will focus on us, and her expression will either be one of happiness or annoyance depending on how pleasant her conversation had been with Pooh.
In the back of our minds, there is always the fear she will be too far away to hear us calling her, and she will lose her way, never to return. It's an irrational fear, of course: she always comes back. But, the fear is always there.
For parents living day to day with an autistic child, fear is a constant. Will she decide to venture outside into the street when we're not looking? She escaped from a preschool when she was two years old. She stopped to play in the snow just outside the door which is the only thing that saved her.
Our house is Fort Knox with a smart Catahoula Leopard dog who somehow knows instinctively Sara can't leave the house without Mom and Dad. She stopped her from leaving through the backdoor once with a pitiful howl alerting my wife.
Sara's issue is with cause and effect. Water is fun and fire is pretty, the fact they are also dangerous doesn't enter into her thinking. It's not a lack of intelligence - she can master any electronic device within minutes and has picked up the piano quickly.
Cause and effect are the issue. She either fails to see the correlation between fire and burn, water and drown, cars in the street and being squished - or, she simply chooses to ignore those correlations.
Take for instance, the correlation between lying down and getting choked on something she is eating. We've become adept at recognizing the sound of her choking. Over the last fourteen years, we've had at least two close calls with blocked airways - the most memorable being a strawberry getting lodged in her throat which ended with her biting my fingers followed by impressive projectile vomiting.
Fear and worry are the daily norm.
And, then there is the big fear we rarely speak of: what happens to her when we are gone? When I'm seventy-six, Sara will be forty. I will be nearing the end of my life while Sara will be less than half way through her own. She has no siblings and the likelihood she will be alone for several decades is very high. This is the worry that will keep you up at night, more terrifying than lodged strawberries and escape attempts.
I write horror novels, and the thought of her being alone is more terrifying than anything I can imagine.
You might ask why I'm writing this? It isn't to garner sympathy - fear aside, we have a very nice life. A normal teenager doesn't give their parents the time of day, but Sara wants three stories at bedtime and a few verses of "Baby Mine" from Dumbo before she goes to sleep. She complains when I go to work. We dance in grocery stores - try that with your typical teenager and they'll die of embarrassment.
No, I'm writing this because there are multitudes of families going through the same fears whether it
be from autism, cerebral palsy, or downs. Many of these families don't talk about it because they're too busy *living* it. But, talking about it is how we explore it. It's how we learn from it and show others what these conditions mean for the families experiencing them.
I'm an optimist by nature. I believe one day autism will be treated by some science fiction means like stem cell therapy, nanotechnology repair of neural pathways, heck, maybe even a symbiotic relationship between artificial intelligence and the autistic mind - somebody will figure it out. Maybe during my lifetime, but I hope and pray during hers.
Or, maybe she's just laughing at us. She watches us worry while she actually knows she will be okay, she just can't be bothered to come out of her mind long enough to tell us.
Before she was born, I had a dream. I'm from Appalachia, dreams have meaning, they're not random. We place a lot of weight on dreams.
The pregnancy was rough and one night I dreamt I was standing in a house. The wind was blowing outside, and I could see a nightmare landscape of storms and tornadoes outside the windows. The maelstrom was bearing down on me.
There was a small hand in mine, a little girl with long blonde hair and my wife's green eyes. She looked up at me and smiled. "It's going to be okay, Daddy."
Those were the only words she said. The dream ended, but to this day I can still see the image of her face, Sara's face a decade before that face would become her own.
Letting go of fear is hard, but I've learned to do it. Somebody once told me God only puts on you what you can withstand. I think this is true.
I can't control Sara's future. I can do my best to guide it, but I can't control it.
Sometimes I feel she has been cheated. She will have adventures, but maybe not the adventures most of us experience.
So, I write adventures for her in the hope someday she will read them and understand they were for her. She is Sinead Landry trained to fight by her crazy step-grandmother. She is Melissa Ames sitting beside a pond discussing "To Kill a Mockingbird" with a werewolf. She is a girl named Rat with pink hair wisecracking her way through the Apocalypse.
She is all these and a hundred others I haven't written yet.
A small repayment for the little girl in a dream who told me everything is going to be okay.