I had expectations, doesn't everyone? I expected to hold my child in my arms, cradling the downy softness of her head, next to my cheek. I expected to put her to my breast for the first time, meeting her eyes in solemn agreement. I supposed that I would hold her small hand tightly as she lifted her foot for the first time, coming down surely without landing on her bottom. I would see her beam proudly at her accomplishment.
I knew that there would be tantrums, two year old balled up fists and screams of rage. But it would be a stage, not a landing pad, and would pass quickly, into squeals of joy and chubby cheeked eskimo kisses. I expected life would be rosy. What I hadn't expected was the monster.
Who is the monster, you ask? The monster we live with day to day, isn't always out in the open. In fact, sometimes, it isn't visible at all. Those are times when she climbs onto my lap, cuddly with a book in tow. But in the back of my mind, I know that monster is lurking, ready to thump us all with a surprise attack. The evidence is everywhere: the set of the jaw when an answer isn't forthcoming. The balled fiststhat come from a level of anxiety that most people don't live under. The scream, that once it erupts, is more characterized by a car alarm than by a voice. The sibling rivalry which, while on the outside seems innocuous, often stems from misunderstandings and inability to read others' cues. At these times, a simple disagreement can erupt into screams, tears and ultimately, if I don't step in and referee quickly, fisticuffs.
This is the monster called Autism. It isn't always an easy houseguest. It leaves the toilet seat up. It uses the last of the milk and then puts the empty carton back in the fridge. It wipes its mouth with its' sleeve and then refuses to wash its shirt. It interrupts. It has terrible language. It yammers constantly about inane topics. It throws fits. It is a beast. A large, lumbering, elephant under the coffee table beast.
My first fleeting glimpse of this monster was when my son was two. Autism came to visit, but didn't stay long. I think it was just getting the lay of the land: checking out its new digs. It wasn't until my son was in the First Grade that autism moved in. Kindergarten had been uneventful. My son did well; we expected he was a genius since at 5 he knew all the colors in the Crayola box and told his teacher the sky was a beautiful shade of cerulean one day. He dressed as Indiana Jones, and well, though that was a bit er, eccentric, it was still pretty cool, so we indulged it. So what if he had to change to Indy clothes before the van left the curb after school? He was creative!
By the First Grade, it was apparent something was different in relation to his peers. JBear couldn't attend to the classroom. He wouldn't do his work. He spent most of the class time either cutting out pieces for an Indiana Jones board game he was devising, or huddled under a desk. Despite the fact that he had a full-time aide to help him, he couldn't handle the class. We saw the school psychologist. We saw a diagnostician. We saw a psychiatrist. We saw the large, black monster and named it for what it was: High Functioning Autism. Yes, he was brilliant, and stubborn and creative. He had interesting topics of conversation, as long as you were enthralled with his latest obsession, (if you could call it a conversation...mostly he talked and you listened). He had a hard time filtering out distractions, and needed textbooks that were "less busy" than the colorful Mtv-ish books that passed for curricula in public schools. I straightened my shoulders. Ok, we can deal with this, knowledge is power, and I am powerful. And Autism slunk behind us and followed us home.
We learned to cohabitate fairly well. Autism was mostly polite. It stayed out of the way. When it caused a ruckus I waved a stick called Intervention at it and it hid behind the sofa once again. And the years passed slowly on. I homeschooled. JBear learned to read. He learned to add, and subtract and measure. He learned to spell, somewhat. He learned to say, "Please" and "Thank You" and "I'm Sorry" and "I Love You." He learned to say he was hurting, he was angry, he needed help. Autism wasn't such a bad roommate after all.
And then, this last year, Autism stepped out of hiding again. My baby girl, my JBean, was diagnosed with Autistic Disorder, too. Here we go again. Autism erupted with a vengeance. It was twice as strong, wily and ready from its rest. It had learned a thing or two. It learned that loud voices add to already chaos. It learned that anxiety multiplied by two is quadrupled, because everyone suffers. It figured out that once the word is no, a fit is in order. And if not staved, the fit will become a tantrum, which will lead to tears, sometimes mine. It learned to steal my time, by interrupting every activity I try to engage in (yes, even writing) multiple times so that I want to cry in frustration, or just capitulate to its will and abandon my project. It learned to cause separation anxiety that is sometimes so terrible it isn't worth the leaving. It learned to change our lives.
But it isn't as bleak as it sounds. Having Autism as a houseguest makes me realize how thankful I am for the quiet moments. The cuddles in my bed as we are waking up. "Teeth check" after she has brushed her teeth at night before bed, and then the welcome laugh as she throws her arms around my neck spontaneously. Playing "What's This," and holding up my finger, answering the question with, "A Tickle!" and having her dissolve into giggles. Experiences that, by themselves are wonderful, but stolen from Autism make them all the sweeter.
I know my children aren't severely affected. Autism wreaks havoc in many lives, not just ours. But I only know what we experience day to day, living with this unwelcome guest. And now, you know, too. In time, I may be able to look at this monster and not think of it as the invader, the party crasher, the Kato Kaelin of my household. In time, if I don't push it, if I let it happen gradually, perhaps, I may eventually call the monster Life. Perhaps, it is almost too much to hope, I might call it Family.
T, who always feared monsters, but is learning to stand up to them