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Love Leads Into Mystery: Raising a Child With Asperger’s

My son was not like other kids. But he taught me to drop my expectations about what life and parenting are all about.

Starry Sky photo by Nara Simhan

Photo by Nara Simhan.


We’re driving home around sunset, late summer. Daniel, age nine, says aloud, “Mom, what do you think is at the end of the universe? Dragonflies? Or just inky blackness?”

I write it down. A good moment when what shines in him shines through, but there are plenty of bad moments, too. Daniel, as exquisitely creative, loving, and intelligent as he is, suffers from what experts label an invisible disability, a chemical imbalance, a little extra electricity in his system.

To kids his own age he’s a nuisance. To the school district he’s a special needs child. To psychologists he’s a quandary. To teachers he’s a challenge. To relatives he’s a little too hyper. To other parents, he’s annoying. To piles of paperwork he’s another diagnosis of Asperger’s syndrome, epilepsy, hyperactivity. To child-rearing books he’s an exception to the rule.

To my husband, Ken, and me, he’s just Daniel, but even we can’t say what in his behavior is chemical, what’s within his control, what he’ll outgrow, what will sculpt and contour his growth in ways we cannot see, what’s a good sign, what’s a bad one. All inky blackness so much of the time, with moments of dragonflies flashing their brilliance across a dulled sky.

***    

Nothing about Daniel’s life has followed anything I read in child-rearing books or heard about friends who already had kids. Even the birth itself was a surprise. After a long and very painful labor, I finally pushed Daniel out, a baby the color of old-fashioned dark lilacs. The midwife placed him belly-down on my belly, cord still attached, and he opened his eyes for the first time.

In some cultures, kids who have seizures, see visions, talk about spirit and death and the curve of the universe, are groomed to be visionaries for the community.

His black eyes burned into mine with an intensity that suggested wherever he came from, he brought it along with him.

“I don’t care where she is, get the doctor now!” the midwife whisper-yelled to the nurse. I wasn’t supposed to hear that something was wrong, that the Apgar score on this baby was only about four out of ten, that my first child was damaged in some way.

“He inhaled amniotic fluid,” they told me, “and he’s not responding to oxygen enough to breathe on his own.” We chose to go to the hospital, hopeful that our wait in the Neonatal Intensive Care Unit would only be a day or so.

A week later, after one minor problem after another, we finally took him home. It was France’s bicentennial, and “La Marseillaise” played on the radio. “You’re free!” we told him, but was he really? He could only sleep when in our bed, and he needed to be held constantly. We figured such intensity was a reaction to a week in the NICU where he was poked and probed according to a constant explosion of beeps and lights. So we held him. So we slept with him. Being that he was our first baby, his intensity didn’t seem unusual.

A year later he almost died when his small intestine telescoped into his large one. Less than a year after that, when he could talk with great skill and a detailed vocabulary, he mainly discussed two topics: death and God.

“Mom, I’m going to die soon,” he said.

“No, you can’t do that. I’d be broken forever.”

He looked at me thoughtfully, and a few days later, said, “Mom, I’m going to die soon, but it’ll be okay. I’ll have God send you another boy.”

“No, it will not be okay. I’d still be broken forever.”

I negotiated with this two-year-old over his life for several weeks, until he told me he decided to live, but he also asked, “Do all babies, after they’re born, leave their parents to go back to God, and then come back?”

“No, Daniel, all babies don’t do that,” I told him.

And most toddlers do not approach other kids at the playground swings to ask them where their god monsters are, and what planets they come from.

I wondered if my panic while in labor the first time caused him to inhale amniotic fluid, and that caused him to have problems. I told the midwife this halfway through labor with my second child, a girl who would be very different than Daniel.

“I see our planet, the water, the land … I see it getting closer, and then I see a group of women singing and waving their arms. In a circle, dancing, laughing and singing and calling to me.”

“No, that’s ridiculous,” she reassured me.

But when your child is challenged, you can’t help but to blame yourself, as if you have any control. My daughter, born when Daniel was three, is the polar opposite of him. At three months old, she knows how to toss her head-full of dark curls and coyly look almost away when someone shows interest. By the time she’s walking, she can work the room of any group, drawing their attention to herself without sacrificing any charm. She’s born with an innate sense of knowing about all social situations, the secret language that eluded me as a kid that largely eludes Daniel now, encoded in her DNA.

The third child, another boy, follows her lead, flowing into groups of babies, then toddlers, then preschoolers without a blip. Like his sister, he knows how to work the system, while Daniel, on the other hand, doesn’t know without being reminded that there is a system, a way of relating in families, in classes, in clumps of kids who find each other on playground equipment.

Daniel looks past his siblings to me one night in the kitchen, pausing in the middle of a six-hour reading marathon that calms him like nothing else. “I’m feeling rather melancholy tonight,” he says, then returns to his book.

***    

In some cultures, kids who have seizures, see visions, talk about spirit and death and the curve of the universe, are groomed to be visionaries for the community. Shamans who mediate between this world and the one beyond this world.

There is no answer. But I can’t stop looking. Not when I tuck my kid in at night, and he says, “I’m just a bad person.”

“In the place I come from,” says Cherry, a sixty-year-old African-American woman who grew up in Black community of post-war Detroit, “the old people would watch a child like that very closely. Because they would know he’s got something.”

When she visits, she and Daniel cuddle up on the couch and read Shel Silverstein poems aloud, together, then alternating who reads each line, their voices creating a harmonics of poetry about washing a butt not your own and losing peanut butter sandwiches.

“What do you see?” my husband asks Daniel one night. Sweet Honey in the Rock music is playing in his room, and Daniel has been staring out into space for some time.

“I see our planet, the water, the land … I see it getting closer, and then I see a group of women singing and waving their arms. In a circle, dancing, laughing and singing and calling to me.”

***

Daniel is in third grade, and I’m on the phone with his after-school day-care provider, who is throwing him out of her day-care center.

“It’s not that I’m throwing him out,” she explains to me repeatedly, and then goes on about how if Daniel has a sudden breakdown, and she focuses her attention on him and not on the toddlers there, one of the toddlers might get hurt, and then she would lose her business, and then her house. So can’t I understand? This is the third after-school program he’s been tossed from in two years.

My Baby Rides the Short Bus Book Cover

My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities
Edited by Yantra Bertelli, Jennifer Silverman, and Sarah Talbot
PM Press, 2009, 336 pages, $20.

Daniel cannot keep still. He must do his schoolwork and eat his meals while pacing the room, but that doesn’t worry me. What does worry me is that the falling down on the floor and crying has dissolved into outbursts of anger, of violence. He kicks a kid who makes fun of him. He rips someone’s shirt. “Accidentally,” he tells me later.

What does worry me is that he has no friends. That he’s been invited to fewer birthday parties than I can count on one hand. That no one ever invites him to their house to play.

What worries me are the looks family members give Ken and me at holiday meals when he yells out at the wrong time—looks that clearly tell us precisely what they say behind our backs.

What does worry me is that I’ve felt compelled to continually explain the medical terminology for Daniel’s conditions to other parents so that they won’t think he’s a bad child or I’m a bad mother. “He’s got Asperger’s disorder, that’s an autism spectrum disorder that basically means he can’t read social cues,” I tell them. “And on top of that, he has epilepsy and he’s kinda hyperactive. It all goes together—too much electricity in his brain, or he’s too inner-directed, or he’s too emotional and sensitive. A chemical thing. We can’t help it.” I buy into the explanations because it gives me some way to convey the impossible, to at least fend off people shunning him because they believe he’s bad, although sometimes I wonder if pity is any better than condemnation.

I sit in my room at night, right across from his room, and listen to the incredible stories he tells himself aloud at night when he’s falling asleep: long narratives about his life, his birth trauma, places he’s visited, how Pluto was formed, or how patterns of electricity work.

No one but those close to him knows he’s gifted also. All most people see are the problems—the behavioral problems or the disability, and it takes a long time to see behind that veil, to see that it’s not his intention to be obnoxious.

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