Love Leads Into Mystery: Raising a Child With Asperger’s
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: 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.
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.
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.
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.
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.
This article was excerpted for YES! Magazine from the book, My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities, edited by Yantra Bertelli, Jennifer Silverman, and Sarah Talbot and published by PM Press.
Caryn Mirriam-Goldberg 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 Ice Cube Books, and her other books include four volumes of poetry, anthologies and more. She teaches at Goddard College, and she blogs at carynmirriamgoldberg.wordpress.com.
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