Tuesday, May 09, 2006

What's in a word

I will never forget the day the word "autism" became part of my life.

I was sitting in a small, windowless room, trying to keep my three-month-old baby from crying by rocking his stroller, watching my two-year-old baby not react to anything the speech pathologist was doing. He had picked up a small car that she had gotten out of a little showbox, and nothing she did could detract him from it. She rang a bell behind her back- no reaction. She asked him questions. Nothing. She asked him to feed a bear, play with another toy, hand her an object. Nothing.

The adventure had actually begin two months before my second son was born. Joey had been quite the star at each of his check-ups; every milestone the doctor had asked about had been acheieved with flying colors. He always smiled, laughed, and seemed to be a happy kid, sitting on the examination table or opening all the cabinets and slamming them closed. His two-year appointment was markedly different. For one, Joey had taken to being fascinated with the edges of things, and wandered about the room with his eyes less than an inch from the edges of the countertops and windowsills. But all kids have eccentricities, right? Then came the big question: was he talking?

Joey never spoke. Before you launch into your favorite my-cousin's-best-friend's-first-child-didn't-talk-until-he-was-four story, unless that child had a serious speech problem, it isn't the same thing. Most kids who speak late say things like "mama" and "dada". They point to objects they want. They pull on your pantleg and let you know they want a cookie. If they are hungry or thirsty, they let you know its time to eat. They wave bye-bye. Joey did not do any of these things. He was just as happy to shop all afternoon, even if lunch was late. He had never pointed to anything in his life. If he was unhappy (especially if we were encouraging him to speak for a treat or redirecting him from an activity), he would prostrate himself on the floor in a howling tantrum we called the "I'm Not Worthy". If you waved at him, he looked at you like you were nuts. This child did not just "not speak"- he did not communicate.

However, he was clearly a happy, affectionate little guy. He would hug and kiss me if I asked him to. He made facial expressions, he laughed, he threw his toys around. He wasn't doing things like jumping, but kids develop at different rates, so there was no real alarm. The doctor told us to see if the birth of the baby would have any effect- perhaps having a need for attention would spur him into speaking.

At the baby's six-week check-up, things were not just not better, but they seemed to be getting oddly worse. He was still a happy little guy, but a quieter little guy who smiled less. He still loved edges, spinning balls (which he did himself), and slamming doors. We decided we needed some help- we were obviously spoiling him, and we could use some pointers for how to get him talking. Off to the speech pathologist!

Which brings us back to me rocking a stroller, watching my son ignore said speech pathologist. She looked up at me.

"I don't know you," she explained with an odd look on her face that made me uncomfortable. "How blunt do you want me to be?"
"You might as well be blunt," I had responded, as if the words were coming from somehwere about four inches behind my head. She thought for just a moment. That pause marked a change in my life, in my sons' lives, in our whole future. It was the calm before the storm.
There were other words that emerged from her lips, but the ones I will always remember were: "Your son is either profundly deaf, or profoundly autistic."

I am an educated person, In fact, I have two master's degrees and a PhD. When I got pregnant, it was done with careful planning and education; my husband and I read books about child development, child psychology, parenting, and pregnancy. We took courses on breastfeeding, first aid, and parenting. We made the choice to have children; an educated, informed choice. We even knew there would be a second child, because the research we knew indicated that having a second child was a benefit to both children.

Nowhere in anything we read, any class we took, any website we examined, had we come across autism as any more than a passing possibility. We knew enough about it to ask our doctor about Joey's vaccinations and thimerasol, but that was about it. It was a word that was relegated to the shadows of statistical improbability. We had no family history of problems. Joey had no thimerasol shots. He head grew normally. He was happy and affectionate. There were no red flags for us, until the flag was slapped in my face on August 31, 2004.

So this blog is about living with autism. My Joey is not just an autistic child; autism is a fact of our entire family. It pervades our lives in a way that can only be compared to the way having a child in and of itself pervades your life. Its like the toys that lay scattered not just in the bedrooms, but also in my livingroom, my kitchen, my diningroom, my bathrooms, and even what was once our basement recroom (and is now Joey's therapy room). Even our front porch, back deck, and yard have the presence of toys. Trying to put them away is useless; I might be able to fool someone for an afternoon that I don't have small children, but why would I? Even when everything is put away, you turn around and step on a matchbox car. They live here.

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