Love Leads Into Mystery: The Heartbreak and Hope of 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.
Under Stars photo from Shutterstock

Photo from Shutterstock.


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.

----

Page 2

You wonder how it starts, and you wonder where it came from. I was a kid who probably had Asperger’s disorder myself. I had no friends in school: In fact, I was the kid other kids built their reputations upon. So I got beaten up constantly.

StoryCorps video still
StoryCorps: The Tough Questions
Video: A 12-year-old boy with Asperger’s syndrome interviews his mother about the challenges–and joys–of raising him.

I blamed it on growing up in Brooklyn and central Jersey, on being small and a smart-ass, on having parents who slapped me around. But I see now I had the same problem Daniel has: I couldn’t read social cues to save my life. I would see a group of kids, want to be part of them, but had no idea what to do, and in fact, what I did do was usually the worst choice.

Negative attention is better than no attention? So I thought.

Where did that come from? Upon hearing what Asperger’s disorder is, my stepmother tells me that is absolutely what my father must have. She, his seeing-eye wife into the social world, would know. He has no idea what to say and often says what insults people most. But the more I hear of his childhood, the more I discover someone who grew up friendless and awkward, tormented and ignored. Like his mother behind him. Like her father before her.

He is the one, more than anyone or anything else in my life, who challenges me to improvise, to forget how it should be, to drop my expectations and ideas about what life is, what a child is, what a parent is.

I trace the Asperger’s line through my family. I stop at Daniel.

Yet I realize how strange it is to call “not reading social cues” a disorder, especially when it’s rooted in reading too much from the inside in, instead of the outside in. Yet I collude with the school’s category of “other health impaired” so he can get services to help him not turn completely in on himself.

***

The advice rolls in regularly, the panacea of drug, alternative, and other treatments. We try everything. We visit psychologists, shrinks, neurologists, nurse-practitioners, herbalists, massage therapists, homeopaths, social works, general practitioners, Asperger specialists, occupational therapists. The Ritalin, as well as some other drugs, make him violent and depressed.

“You just have to realize,” says a friend of mine whose son suffered from severe learning differences all through his schooling, “that nothing will work. There is no magic pill.”

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.”

“No, you’re not. You’re a good person.”

“That’s not true. Something is wrong with me.”

But it’s not your fault, I want to scream into his bones. You did nothing to deserve this.

***

Both the center of my heart and the edge of my universe contain Daniel. He is the one, more than anyone or anything else in my life, who challenges me to improvise, to forget how it should be, to drop my expectations and ideas about what life is, what a child is, what a parent is.

He teaches me about the psychic wounds I carry into my parenting, and my only choice is to heal myself.

I make many mistakes with him, moments I wish I could do over. I also do many things right, hold him in the middle of the day on the couch mid-winter for no reason, listen to him carefully.
“Mom, I have to make my own mistakes,” he says wisely, like any child would. But it’s very hard to watch a kid whose days are spent being shunned by peers, analyzed or dismissed or hoped upon by teachers, medicalized by health professionals, isolated by his own choices and the constant reinforcement of others who chose to isolate him. To watch your kid.

Daniel teaches me that all rules are arbitrary, answers are illusory, future visions are incomplete. He teaches me about the psychic wounds I carry into my parenting, and my only choice is to heal myself. He teaches me to be more patient, more accepting, more tolerant not just of him but of other kids. I see a nine-year-old hyper boy out in public these days, and I don’t get irritated with him; instead, I feel empathy and wonder how his parents are doing.

Mostly, Daniel teaches me that love is never arbitrary.

That love leads us into mystery where no one can say what comes next, or how, or why.

***

To my shock, everyone comes to his ninth birthday party, except one boy whose mother doesn’t want him to associate with Daniel. We meet in a pizzeria where Daniel opens presents in a haze of joy. Some of the girls argue over who gets to sit next to him. One kisses his cheek every time he opens another gift.

I hope what’s different about him in the best sense doesn’t get sanded off by the life ahead. Yet the life behind us shows me that Daniel has gotten through so far with his Daniel-ness fully intact.

In the future, there will be Daniel wanting to make pickets to go and storm the new chain bookstore that drove our locally owned one out of business. Daniel determined to teach a boy who torments him that “it’s not right” and not just. Daniel lecturing the other kids until they lecture us about the evils of McDonald’s and the loss of rainforest lands for grazing cattle.

And Daniel at Yom Kippur services with me, hitting his heart as he sings the prayers, determined and utterly earnest in his determination to ask forgiveness, to start again.

Now he is at college, a small nest-like college in a small Mennonite Kansas town. Immersed in a community where everyone knows everyone, social activities tend to be all-inclusive, and being a little different and a lot Jewish is seen as exotic, he’s thriving. He has friends, he’s pursuing his passion for prairie restoration and ecological activism, and he’s found a mild form of a Ritalin-like substance, which helps him study more steadily. Somehow he’s grown into and through his various diagnoses. A success story, his old special education teachers, autism specialists and paraprofessionals tell me whenever we see each other at the coffee shop.

Still, I worry, surely more than I would have had he not tunneled through rock and steel throughout his childhood. At the same time, I hope what’s different about him in the best sense doesn’t get sanded off by the life ahead. Yet the life behind us shows me that Daniel has gotten through so far with his Daniel-ness fully intact.

***
Dragonfly Photo by Eddie X

Metaphors are ways to contain the uncontainable. Symbols to hold what cannot be held, like fear or hope contained in darkness and dragonflies. Illusions, but what other way can we get close to the center of what’s real?

It’s like the myriad of names for God in Judaism—all ways to circle around what cannot be touched.

I remember Daniel at age nine: he sits at the kitchen table, and over his pasta, tells us he’s convinced the universe does actually end at some point, that space curves into this ending. So there is an end, but he doesn’t know what’s there. He just knows all things curve into the future, into endings and infinity at once. And he can hold both the endings and the infinity in his head at once.

Like dragonflies in the inky blackness. Like Daniel in this world.


is the Poet Laureate of Kansas and author of 14 books in print or forthcoming. Her novel The Divorce Girl is due out this summer from , and her other books include four volumes of poetry, anthologies and more. She teaches at Goddard College, and she blogs at .

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