|Sometimes I stop during the crazy tumble of days and pause to wonder if my lifelong obsession with normal lives is a coincidence.
Maybe I longed for the order the word “normal” implies because I’ve always possessed a strange habit of diving into life backwards.
Here’s an example-I conceived my first child, married, divorced and then decided I wanted to go back to school-in that order.
I blame the reverse order direction of my early adulthood on being very young-so young that my first run out of the gate didn’t embitter me. I had every intention of getting this normal concept right. It took a while to find the nerve to enter round two, but eventually my biological clock detonated and I ran head first into my future: Mr. Normal. In six months time we courted and married. I quit my middle-management job and settled into a nice, understated home in the suburbs.
By the year’s end, we’d added another perfect daughter to the lovely teenaged girl I brought into our marriage. With our procreation completed, we settled into my carefully wrought version of a normal life.
This vision of mine included some pretty time consuming trappings like homemade bread and gourmet meals concocted from rare ingredients such as portabella mushrooms. I’m sure my husband enjoyed my culinary efforts, but to be honest, I was bored out of my gourd. But hey, I got what I asked for-storybook normal, right down to the big black dog that fancied himself a lap-hound.
Over the course of twenty months my ovaries rebelled against my carefully drawn lines and presented us with some unplanned, but certainly not unwanted additions to our family: two baby boys!
The ink was barely dry on the birth certificates when I began planning my sons’ futures. David would be brilliantly gifted and athletic. Perhaps he’d spend a brief stint in his father’s footsteps as a Navy SEAL, then move on to his run for the Presidency.
When news of Jamie’s arrival hit home, I assigned him with the serious-minded pursuits of a Nobel Prize in literature followed by a Pulitzer or two. I dreamed normal dreams for normal boys.
Cut and fade a few years into the future. Come and visit me and I’ll show you what’s normal for us these days.
While Mr. Normal works overseas to pay our ever-mounting bills, the kids and I spend our days here, in our home on a Dogwood lined cul-de-sac that I love because it has the most precious white gazebo in its center.
Our house is unremarkable in its utter middle America-ness-an aging four-bedroom rancher boasting a huge fenced backyard.
As I invite you inside, I silently hope that you aren’t the nosey type who will look into my fridge. Because if you do you’ll see that the only bread in this kitchen is store bought. A closer inspection will reveal that closest thing I’ve seen to a portabella mushroom lately is the unspecified green stuff growing under the veggie drawer.
I try to distract you from the fridge by inviting you into the dining room.
“Oh!” You exclaim. You are beginning to see that something is amiss. There is no table in our dining room. Instead, you see towering metal frames, pulleys and contraptions that bring to mind a medieval torture chamber. As the fear dawns on your face that maybe something perverse goes on here, I inform you that this is our occupational therapy room.
You ask me-“is someone here ill?”
“No, we’re all perfectly healthy.”
You shake your head in confusion, and cross what remains of my dining room to look out at what used to be a screened in back porch-a Carolina room, we’re fond of calling them down south. But you don’t see the white wicker chaises or the sweetheart roses climbing pristine gingerbread trellises you expected.
What you do see is a scene lifted from a preschool-a room full with a child’s version of a king’s ransom: toys, books, games and puzzles. You also see my son David, the most precious blue-eyed boy in the world, hard at work with his teacher.
“Oh,” you say, “you home-school your kids?”
“Well, yes and no. They go to school, but they also get several hours of one on one teaching after school and on weekends.”
I notice a shadow of disgust in your expression; the moment where you think perhaps a call to social services is in order.
I have mercy on both of us and spill the beans. “The good news is I’m no longer bored out of my gourd. The bad news is that normal has escaped me again. Both of our wonderful, perfect and celebrated little boys were diagnosed with autism within a year of each other.”
I force down the lump in my throat and struggle to tell you that at the time, I wondered if it death would have offered my boys a kinder fate.
This is not a pretty revelation, and in uttering it, I am consumed with the need to redeem myself. “You see, I manage two full time therapy programs designed to teach my kids things that other children learn normally-like waving goodbye, blowing kisses, how to do puzzlesâ€¦”
You look horrified.
I lead you down the hallway to our guestroom and open the door. My son Jamie looks up from the table where he and his teacher practice social skills. My boy smiles the brightest of smiles and says, “Hi, I’m Jamie. How are you?”
You sigh with relief, and say what everyone who meets Jamie these days says: “he doesn’t look autistic to me. He’s so cute!”
“Yes,” I say, “but you didn’t know him three years and four-thousand therapy hours ago. See that scar in the middle of his forehead?”
You see it, because everyone does. You nod and look concerned.
“Jamie got that by slamming his head into the corner of a doorway-on purpose. Hurting himself and others is pretty much all he did before we started this program. Now we have days where we forget he’s autistic.”
“And David?” you ask.
“David is doing better than we ever dreamed possible. He is still undeniably autistic. He talks with pictures, he loves the outdoors, and he is the happiest child I know. He will have a good life.”
I see the pity in your eyes.
I ask you not to feel sorry for my children or myself. We are fine. We are happy.
But you ask anyway-everyone asks-“how do you do this?”
I answer you the same way I’ve answered everyone who has asked before you-I do it because I am a mother.
We are lucky. Every day David and Jamie’s lives become a bit more removed from the tortured children a doctor once told me to consider institutionalizing. With this coming realized, both of my beautiful daughters are free to have more of my time and attention.
Even if my sons never make another lick of progress, I am through with mourning. In discovering the capabilities of the children I have, I buried the dream babies I expected.
Finally, you ask me-everyone who knows me eventually does-“don’t you ever want a normal life?”
It is here that I whip out my Webster’s dictionary and read you the definition of normal: conforming to a usual or typical pattern.
This is our normal. I wouldn’t trade my usual or typical pattern for all the gourmet dinners in the world.
Before you think it appropriate to canonize me a Saint, let me tell you that the ship that carried us on this journey floated on a storm tossed sea of tears. The route our family took to resurrect normal probably sits somewhere due west of the route you would have chosen. It took us a while to get here.
If you should ever come to walk in my shoes, I will hold your hand and cry with you. Then I will tell you the only thing I know is true: when the shock wears off, you will rewrite your version of normal every day. Over time, a new pattern will reset the balance of your upended world.
Now comes the good part, so listen carefully. When all of this happens, a new kind of happiness will come and sustain you through those inevitable moments where you long for something so simple as a gourmet dinner.
About the Author:
Liane Gentry Skye is one of the pennames of an intensely private stay at home mother to four perfect children, two of which happen to have autism. Liane gave up sleeping a few years ago in exchange for the clandestine pursuit of the writer’s life. “Due West of Normal” serves as the forward in her first book, “The Book of Hope: Snapshots from an Autistic Child’s Journey with Visual Communications”, to be released later this year. She is currently working on another book: “The Color of Love: Living Proof that Autism is not a Curse.”