"We're trying new medication for Jake," my friend Lauren tells me. Her son, like mine, has autism and seizures.
"We saw bad side effects on that one," I warn.
"I know. The doctor told me Jake might even have hallucinations. So I said, 'Really? How would we be able to tell?'"
We both crack up. We convulse with hysterical laughter.
This is what passes for funny in the Land of Autism. Gallows humor. Our personal shorthand. It's how we cope.
When Lauren's son Jake and my son Mickey are hospitalized at the same time for video EEG monitoring, Lauren and I arrange for the boys to share a room at N.Y.U. Medical Center. Mickey slugs any technician who tries to come near him. But by day's end, both boys wear identical sets of 32 electrodes, glued--with great difficulty--to their scalps. Lauren and I get to share their room for five days too. We collect sheets from the nearby linen closet, make beds out of reclining chairs. We sleep in our clothes. Take turns taking showers down the hall in a cold, tight stall with a warm trickle. After several days of this, I turn to her and announce:"The spa services here suck."
"There are two kinds of days," our friend Alison says. "Bad days and good days that haven't gone bad yet." And there are often exhausting days, when it feels like too much effort to talk to anyone, because I just don't want to have to explain what it's like living with autism. That's when I call Lauren.
"I have to read you the book review in today's New York Times," I tell her. "'A Gallop Toward Hope: One Family's Adventure in Fighting Autism. Rupert Isaacson took his autistic son, Rowan, on a trip to Mongolia to ride horses and seek the help of shamans two years ago. His new book, The Horse Boy, tells the story of their journey.'"
"Gee. If only we'd known," she says.
"Yeah," I say. "Maybe witch doctors are the way to go. Do you think Blue Cross would cover that?"
We saw shamans too, in the beginning. Only they called themselves Alternative Therapists, or Holistic Healers. That's what desperate parents do after the diagnosis. You follow all the prescribed therapies, of course, but pursue every other treatment you can find. You try them all. Crazy diets. Pancreatic enzymes. Epsom salt baths. You deplete your savings on expensive and unproven treatments. Woo-woo stuff. There's a whole cottage industry of people who sell hope. Snake-oil salesmen, each one dangling the carrot of Cure de Jour.
Over the years you learn to temper hope with reason. And along the way, if you are lucky, you find fellow travelers. Wise-cracking mothers who become your lifelines. Together you strip mine the lonely landscape for gold nuggets of humor. The joking insulates you against the despair.
There's a New Yorker cartoon I love: two women are sitting in a bar. One says to the other, "Talk to me. You have wounds. I have salt."
"I just read a book that claims you can heal autism by swimming with the dolphins," reports Lauren. "I'm thinking of pitching a book of my own: How I Cured My Child of Autism by Swimming With Galapagos Turtles."
"Or maybe you should call it The Turtle Cure Diet: How to Coax Your Autistic Kid Out of His Shell?"
The truth, of course, is that we all feel that no matter how much we have done, there will never be enough we can do for our children.
The therapists say euphemistically that our children have "challenging behaviors." They're quirky. Cracking jokes about it may be our version of whistling past the graveyard, but it also feels rich and restorative. Edgy humor keeps us afloat. It's a form of hard-earned bravery.
We are riding in Miriam's van. Her son James likes to issue driving directions. "We have arrived at our destination," he says in a robotic voice.
"You think he can make a career being the voice of G.P.S.?" Miriam asks.
'When am I going to drive?" Jake asks Lauren. She doesn't miss a beat.
"When you're 50," she says.
Lauren emails a story on the AP wire. "Is Facebook addictive?" the article asks. "A British scientist says all that time online could be changing how the brain functions--shortening attention span, even contributing to autism."
"Is that so?" I reply. "But last week some researchers in Seattle insisted it was all the television kids watch on rainy days."
"It wasn't TV," Miriam points out. "They blamed autism on the rain."
"Did you see that new study? The headline said, 'Autism Moms Have Stress Similar to Combat Soldiers.'"
"Someone spent money to study that? They could've just asked us."
Miriam laughs. "Ladies, we need uniforms. With merit badges. Then we could just say, whoa, learned that already. See here? I got this one in Guadalcanal."
Yes. That's us. We are veterans of the Autism War.
Originally published in Skirt! Magazine
Follow Liane Kupferberg Carter on Twitter: www.twitter.com/LianeCarter