I would have made a good 17th-century melancholic. Even as a child I was dreary. I remember my mother yelling at me to smile more, like the other kids. I tried, but secretly I didn’t see the point; grinners just didn’t understand the world. Even waking up to a sunny summer day could fill me with dread. A beautiful day only underscored the impermanence of happiness. Beauty today meant rain and wind would get me later for sure.
Becoming a writer was a good-enough cover for bouts of nihilism, depression, and black apparel. But when I had a child, J, who turned out to have serious health problems and autism, I had to look straight into the darkness, with no place to hide, no pose to hold, and really figure out how I believed the universe worked and how I was going to continue to live in it.
When you are told your child has a serious disability, while you’re still in shock, it is common for you, the mother, to be handed an essay, “Welcome to Holland,” by Emily Perl Kingsley. It’s a piece that would not be out of place on a Hallmark card. It compares finding out that you are living every expectant parent’s worst nightmare to being on a plane to Italy but finding yourself landing in Holland instead. So once you get over yourself—I want the Trevi Fountain! Pasta Puttanesca!—and learn to appreciate the tulips and wooden shoes, you’ll be able to see that what happened to you is not what you planned but wonderful in its own way.
No disrespect to Ms. Kingsley (who has a child with Down syndrome), but the women in the excellent parenting group I had the luck to find had only two words for this poem: fuck that. Sometimes a new member came in complaining about “Welcome to Holland,” and we could only cackle. Raising a disabled child can sound noble, but we knew what it meant: screaming fits that lasted for hours, painful bowel problems, seizures, self-injurious behavior, extra large diapers, days and weeks swallowed by doctors’ visits, never hearing the word Mommy.
In our group, we talked about how we all have points when we hate our lives, not because our children are burdens but because we can’t make them happy, or sometimes even comfortable. What bigger failing is there for a parent than not being able to comfort her own child? One parent of a teen spoke of how she had to lock her in the garage and stick her own head in the shower when the second hour of high-pitched screaming pushed her near the edge. (Autism carries with it a 90 percent divorce rate, and the latest awful trend is parents—including a former Bush administration official—killing their children, sometimes in murder-suicides.)
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