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Act Early Against Autism

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  Act Early Outtakes: The Earliest Years

Although autism and mental retardation manifest themselves differently, I later sympathized with how my aunt and uncle must have felt when they were faced with caring for Jennifer alone. In a similar situation with Leo, I was depressed and felt that I had no support from anyone except David and his sisters. My brother never called to ask me how I was doing or if there was anything he could do to help. My mother said I should have gotten an abortion, but I’ve blocked the memory of that conversation. I only have David’s memory to rely on, and he swears she told me just that.

But any debate over what I should’ve done before Leo’s birth is a moot point. Autism isn’t a disorder that can be tested in utero, and even if there were a test, I would have never thought to ask for it. I was more concerned about Down syndrome, given my advanced age, and again my attitude was shaped by an experience I’d had during the time I was in college. I’d call my mom from school and ask her about work and the patients she cared for in the nursing home. I was intrigued with their illnesses, and she talked a lot about a girl with severe mental retardation who lay in a crib all day in a fetal position.

She said the girl, who was my age, was “sickening to look at” and thanked her lucky stars it wasn’t me. On one of my visits home, Mom showed me the girl. She looked just as Mom had described—curled on her side and no longer able to straighten her back. She lay on an absorbent pad because the nursing home frowned on diapers and the rashes they caused. She had short coffee-colored hair, her mouth gaped, and occasionally she laughed for no apparent reason. I wondered if she was conscious of her surroundings, but I thought from the vacant look in her eyes that she probably wasn’t, which was just as well.

When I met David in 1993, he was part of President Clinton’s policy tech team, which worked on the privatization and business use the Internet. I was founder and publisher of The Internet Letter, the first newsletter about the commercialization of the Internet. We met over email but not by accident. I initiated the email under the pretext of inviting him for lunch, as I had done with sources in the past to gain inside information.

I married David when I was forty-one, and we both realized that if were to have children we had to get started right away. The following year, in 1997, I gave birth to our first son, Lucas, but we didn’t want him to be an only child. I had a cousin who’d grown up without a sibling, and Mom had always said what a shame that she didn’t have anyone to play with.

I didn’t want Lucas to be lonely, but I didn’t want to have “Irish twins” like my mom. Ironically, after Lucas’s first birthday, I struggled to get pregnant and turned to a fertility drug. It worked after two tries, and Leo was born after an uncomplicated pregnancy in 1999.

When the doctor handed me my newborn son, I placed him on my chest and knew that I wanted to give him a childhood as wonderful as mine and love him, no matter what.

 
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© 2008 Jayne Lytel
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