Stories, was her answers:

But after years as an empowered and optimistic parent with a
reputation for maintaining a sense of humor, I resisted incarceration
in this Opposite Land where all of our good stories were “bad” and
all of our bad stories were “good.”

From later in the essay:

Is there anything else we should know?

Yes. After years of singing Yes, I can! filling out those forms became
my debut as a diva of No, I can’t. Of course, I’d written about
my experiences with Stuart before then, but always post-crisis, in the
glow of a victory. The hard truths were there, but those stories all
ended on the upsweep with at least some optimism and a whiff of
earned redemption. Now I had to renounce my faith in my ability to
care for my child in order to get the services he needed—an experience
another group home mother compared to a Christian being
forced to deny Christ.

And I did it. I told on him; I gave evidence against my son.
The shame of that betrayal merged with the recognition
of the truth in those stories to keep my head pounding and my
stomach churning for five days.

Is there anything else we should know?

Yes. Of course I remember that day the previous summer on
the beach at the end of our street. My husband and I swimming with
our kids in Lake Michigan, and then warming ourselves on the sand.
It seemed just a little bit reckless to sit there together with Eve and
Stuart still out there, waist deep in the water. My husband, Arnell,
disagreed. Maybe he’s right, I thought, Stuart would never, even
inadvertently,do anything to endanger his little sister. He adores her.

But I stayed alert, watching Stuart’s every move, watching my
watchfulness, squinting through sunglasses as Arnell lay on his
towel. We’re like that: he’s optimistic about the present
moment—until something goes wrong—but pessimistic about our
future. I always assume we’ll all be okay in the lovely hazy future,
but what might happen right here, right now, freaks me out.

I watched them splash, playing. Stuart laughing. Eve dolphin-leaping
up and under. Both such strong swimmers. A plane razzed its
single engine at us, turning there just below Chicago’s northern border
to circle south again with its cell phone banner ad in tow. Somebody
kayaked past, beyond the buoys. Arnell wondered aloud if the
radio-controlled airplane we’d seen the previous week might return.
A jet ski howled away from the next beach south, zooming the kayak.

Then I saw Stuart’s broad back, trouser cleavage, and red bathing
suit as he dove under the water, but no Eve. The lifeguard on the
concrete jetty had only two others to watch but she saw a game—
nothing alarming. Eve’s arm surfaced then vanished. I slapped my
husband’s leg and stood for a better view. Her open mouth appeared,
her face sheeted in dark hair, but her brother’s hand on her neck
pulled her down.

“No! Stuart, stop!” The lifeguard looked at me, then him. They
were both under again. Eve is less than half Stuart’s size. He likes to
pretend we can all swim underwater like the seals, penguins, and
mermaids in his videos. He only wanted to watch her. He meant her
no harm. I started running. Arnell passed me. I was not afraid for
her life because we had plenty of time to save her—they were only
thirty feet from the beach—plenty of time to wonder if I’d been
stupid and callous.

Before Arnell’s swimsuit was wet, Eve popped up ten feet away
from her brother and kept going. I’d watched the beginning, the
middle, the end, felt no surprise. We had plenty of time.

Eve walked out of the water, head down, round shouldered.
She let me hug her with the towel. I told her she did the right thing,
and she was a strong girl to swim away like that, and I was sorry.
She nodded.

“He didn’t mean to hurt you.”

“I know, Mom.”

Everything I could say to her on the beach was
already obvious, just the way it’s always been for us.

“That was scary. You okay?”

She nodded. I thought of her dead guinea pig and everything
I’d said then, and how forgiving she’d been as she cried, explaining to
me that Stuart didn’t understand what he did. This is what happens
when her parents foolishly pretend to have a normal family.

(The essay continues in the book.)

Pinkham’s family, including Stuart, adjusted to the transition and, to this reader’s great relief, she writes near the end of the essay, “we’re telling good stories again”. From Pinkham:

Stuart just turned 17 on February eighth. He’s a mostly happy guy, but still has a few rough tantrums every couple of weeks. His biggest pleasures when he’s home on weekends (besides Jello, toy trains, train videos, Sonic the Hedgehog and Wallace and Gromit) is his music. He rolls my desk chair in front of the stereo and cranks up the N’Sync, and then “It’s Raining Men” and then “Holding Out for a Hero”. He’ll spin and dance for a half hour or more, sometimes at six in the morning. Of course, the music drives his sister Eve nuts, but my husband and I are thinking about hanging a disco ball in our living room.

His longterm future is foremost in my mind these days. What will happen when he turns 22 and is no longer eligible for school district funding? The rate that our state pays to the group home agency will be less by then too because there’s a wildly mistaken bureaucratic assumption that adults are less expensive to care for than children. Illinois’s funding level for adults with developmental disabilities is 51st in the nation. (We’re even behind the District of Columbia.) It’s nearly impossible for an agency here to provide the level of care that my son will require for a decent life. Nearly! The people at his current agency are passionately working to expand their adult residential and vocational programing. We’re working and hoping with them to find additional funding sources, but if they can’t do it, our family will be forced to leave the state and the city we’ve loved for 29 years.

During the 1980s, B. E. Pinkham was an artist and earned all the fine art degrees she would ever want. During the 1990s, she was a landlord and acquired all the buildings and tenants that she would ever want. By 2000, she was a mother and had all the children she would ever want. Since then, she’s been writing. She hasn’t yet written everything she wants. Her work has appeared in Brain, Child Magazine. She is seeking a publisher for her memoir, Let Me Look at You, in which autism plays a shockingly minor role.

In “The Visit”, Matthew is home from his residential school soon after his 16  year-old brother Andy has gotten his driver’s license, a hallmark of independence that was unlikely for Matthew anytime soon. From Shumaker’s essay:

Matthew had just mowed the lawn and asked if he could wash
my car. I thought this was fine and perhaps a good chore to distract
him from lawn care,one of his current obsessions. He thoroughly
washed the car and we praised him enthusiastically. He rewarded
us with one of his wide, honest smiles.

He asked that since he had done such a great job, could he please
drive the car five feet into the garage. His only experience with driving
until then had been in the parking lot of our local church in Peter’s car,
with Peter’s hand planted firmly on the emergency brake. We knew
that this concession could further inspire Matthew to pursue getting a
driver’s license, but we were worn down by relentless petitioning.

In a moment of weakness, I asked Peter to sit in the passenger’s
seat of my car while Matthew drove the car into the garage. I stood
in the driveway, and, already wondering what in the hell we were
doing, watched Matthew get in the driver’s seat. As Matthew started
the car, Peter, who was not familiar with my car, asked, “Where is the
emergency brake?”

Before I could reply, the car had plowed into the garage wall,
crushing a number of full paint cans in its path and destroying two
bicycles. Paint was everywhere, but fortunately, no one was hurt.
Andy, whose room shared a wall with the garage, ran out of the
house looking dazed. “There’s a big hole in my wall.”

As we surveyed the damage in stunned silence, Matthew said
that maybe he shouldn’t drive until he was twenty-one. John offered
to pay for the damage with his allowance money. Andy shook his
head and resumed his telephone conversation with his girlfriend.

“I can’t believe what idiots we are,” Peter mumbled. We both
recognized our lapse in judgment. We also knew that we had been
driven to this by our desire to keep the peace and to try to help Matthew
feel like a regular eighteen-year-old.

Matthew’s remorse following the incident was genuine. We
believed he would share our logic that this mishap proved that he
should not drive the car this summer—or ever. Still, we hid all extra
car keys and kept the ones we needed in our pockets.

In the days that followed, I kept Matthew very busy. He
mowed and edged our lawn compulsively, so much that it looked
like a putting green. I took him for a walk over the Golden Gate
Bridge one day and then on a ferry boat ride to Alcatraz the next.
We went bowling three days in a row, and I was beginning to crack.
So I took him to the Blockbuster to rent video games, and we came
home with a stack.

I must have set my keys down for a second while I got a diet
Coke out of the fridge and popped it open.

Silence. Why was the house deadly quiet?

Where was Matthew?

“Matthew?” No answer. “MATTHEW?” I yelled out the back
door. I walked out my front door and noticed the garage door was
open. The car was gone.

BUT WHICH WAY?

The Middle School down the street—I’ll bet he went there to
show off.

I sprinted down the street in my clogs and around the corner to
the middle school, my purse still hooked to my arm. Sure enough,
there was my car parked crookedly in the parking lot, Matthew standing
nearby looking scared, hugging his shoulders in reassurance, head
down. A group of fourteen-year-old girls who had been playing basketball
huddled nearby.

“He, like, almost totally hit us,” said one. Another was crying to
her mother on her cell phone.

Somehow, I got Matthew back in the car and drove him home.
I knew it was important that I choose my words carefully. Keep it
simple, I thought. Don’t lose control.

Matthew sat across from me in our living room with a nervous
smile, rocking and waiting. I was still out of breath from running,
and from the horror of what could have transpired. Finally, I said, “I
am very angry with you right now.”

“Well, I’m angry with you for yelling at me in front of all those
hot girls,” he said, stomping his foot. “You should be proud of me
for driving so well!”

And then as if on cue, the police car pulled into my driveway.

“Uh, oh,” Matthew muttered.

(The essay continues in the book.)

I won’t say any more other than, no one gets hurt and the ending is, well, maybe not what you expected.

Laura Shumaker is the author of A Regular Guy: Growing Up with Autism, a memoir about raising her autistic son, Matthew, to young adulthood. She is a regular contributor to NPR Perspectives and a columnist for www.5minutesforspecialneeds.com. Laura’s essays have appeared in the San Francisco Chronicle, the Contra Costa Times, the East Bay Monthly, The Autism Advocate, on cnn.com, A Cup of Comfort, and Voices of Autism among others. Laura speaks regularly to schools and book and disability groups. She lives in Lafayette, California with her husband, Peter, and her three sons.

At first, you may have done what Quinn does: “You smile. You nod your head, perhaps a little too vigorously. All is well in my world, is what you hope to convey. But what you think is Please can we not do the parenting check-in thing?” Then you “launch into an interrogation about his family, his offspring, everything in the world you can think to ask.”  Invariably, there is a pause. From the essay:

Today, your colleague asks, “How’s your daughter?”

You feel a wave of weariness. But you nod quickly. You smile brightly. You say your daughter’s name. You say she’s eighteen. You glance above the double doors to see where the elevator is now, how many more floors must you wait.

“Eighteen, already? Wow.” He will probably ask next where she goes to school. He does.

You push the elevator’s Up button again and make yourself answer matter-of-factly, cheerfully, without hesitation, “A small highschool for kids with neurocognitive disorders.”

Then you step back.

You wait.

Often—maybe 60 percent of the time—the response to this is, “Oh.” Because neurocognitive sounds so messy and not fixable, and it always seems to thwart the natural momentum and rhythm of congenial discourse. For people to inquire further, something special is required, something like a straight—yet supple—spine. The remaining 40 percent, those with straight, supple spines, might ask neurocognitive means. Is that some kind of learning disability, like dyslexia?

Your colleague today surprises you; perhaps, after all, he is a superior supple-spine person. At this point you elaborate (briefly, very briefly), that your daughter’s school is for kids with one of several brain disorders on the autism spectrum. But there is that word autism, and it sounds even scarier than neurocognitive, and often after you use it, you can move directly to weekend plans and the weather.

“Ah,” your colleague is nodding heartily now. He, too, checks the status of the elevator. He tries to decide if that Up button needs further pressing. “So,” he asks finally, “any plans for the weekend?”

But a small percentage—maybe 10 percent—won’t be content to stop there. These are the people who will ask how your daughter came to have this disorder. These are the people into whose faces you will look, and if you detect a certain quiet calm in their eyes, you will consider suspending your conversational acrobatics and saying, again without diving into detail, that your daughter had a rough start. You may say (very lightly, very casually and conversationally) that she arrived twelve weeks early, one of those micro-preemies who weighed not quite two pounds.

“But she’s okay now?” the optimists will want to know. “Except for the learning disability?” How they long to hear one of those triumph-over-all-odds, happy-ending stories! Here you face another turning point. You will bob your head around in what is mostly a yes, with a tiny suggestion of not exactly, because by now you are unwilling to minimize, unwilling to construct that simplified, satisfying conclusion. You could, and you don’t know why, but now you won’t. You just won’t do it. Instead, you reward their quiet eyes with that little head-bobbing triangle of truth. Not exactly.

You have no need to elaborate. If you can wrap it up comfortably now, and usually you can, you will say something wry and inclusive, something to chase away the small cloud of misfortune, like, “Parenting…always full of surprises.”

If yet more is required, which is rare, you will say to the remaining 2 percent, those few with supple spines and quiet eyes and something more—that lovely combination of gravitas and grace resulting from suffering—that your daughter has health issues still, but she is also an incredibly brave and wonderful kid. You smile reassuringly. You thank them for asking. By then, surely, your elevator will have arrived.

(The essay continues in the print version of the book.)

I received this update from Quinn about her daughter, Molly:

Molly (left), looking magnificent

On February 14th, twelve days before her twenty-fourth birthday, my daughter Molly opened her apartment door to find a valentine on her doorstep.

Actually she’d been alerted to its presence via a text message from her shy and handsome new friend, K.—whose apartment door is about 100 feet from hers—while she was eating a microwaved frozen meat-paste burrito and a Coke for breakfast. Perhaps K. was concerned she might not find the pink envelope he’d left for her, but find it she did and it precipitated a flood of phone calls home. What did this mean? Was this a friend thing or a love thing? What does one do in a situation like this?

“What about walking down to Walgreen’s to get a valentine for him?” Dan asked.

From Walgreen’s she called to ask if she should get the one with bees on the front that said Bee Mine, or something more neutral, like the one with a cartoon Shakespeare writing illegible (and, therefore, neutral) messages on wee little candy hearts, and also, there were these little heart-shaped chocolates, should she get those, too?—and once back in her apartment, should she write an additional message inside the card, and if so, what should she say?

“Well,” I said, taking the call this time, “you could say something like: I’m happy that you joined the program and I’m looking forward to getting to know you better…”

“Wait, slow down. I’m happy that…what?”

Two days later she called sobbing because her longtime online celebrity role-playing (histrionic, bi-polar) friend—her closest friend in the world for 2+ years (whom she’s never actually met)—was livid about Molly’s exchange of valentines with K. and was now doing and saying mean and hurtful things on purpose.

For years Dan and I have been suggesting with increasing vehemence—but without success—that flesh-and-blood friends are so very much more satisfying than virtual ones. So when Molly announced through her tears, “I can’t do this anymore, Mom. I want to leave the game and change my phone number,” I jumped around the kitchen in silent ecstasy. And despite all the discharges of telephoned grief over the ensuing days and nights, Dan and I, and all the flesh-and-blood human friends we had notified about this important development, remained ecstatic.

Several days later, Molly called Dan all out of breath. “Dad. Dad. I have amazing news.”

“What?!” he said, putting her on speakerphone.

“Guess.”

“K. held your hand?”

“No, but close.”

“He kissed you?”

“Dad. No! Come on.”

“I don’t know, honey. Just tell me.”

“K. just asked me out!”

“Hi honey, it’s Mom,” I said, leaning closer to the speaker. “That’s fantastic! Is he there now?”

“No, he just texted me.”

“And you texted him back?”

“Yes! Isn’t this fantastic?”

“Do you maybe want to invite him to come over?”

So she did, and he did, and there was actual human cuddling on the couch and, a few days later, declarations of undying something, and all of this was cause for a weeklong series of celebratory gin and tonics for Dan and me.

Our gaiety continued for several days until we received a text that sandwiched this breezy message: “A creepy guy just offered me a ride while I was waiting at the bus stop,” between two gushing assertions that K. is the kindest, handsomest, most loving person she has ever known—that she will ever know—and she has never, never been happier.

“How nice,” I texted her back, fumbling for the 24-hour hotline to her program’s director whilst trying to decide if the police should be the first call I made.

After a period of intense investigation that evening, Dan located a five-foot-tall woman with a 10^th degree black belt in something who had already worked with a few people on the autism spectrum. In an hour he’ll make the 2-hour drive to Monterey so he and Molly can spend six hours learning how to kick the shit out of a heavily padded pervert-shaped person.

In the meantime, Molly appears to be avoiding our attempts to reach her. We learned from her therapist this week that she canceled a 9 AM session at the last minute because it was “too early” and she was “too tired” ($125 down the drain). From one of the coordinators in her program we heard that she wants to drop one of her classes at the community college because it’s “stressing her out.” In the past, this behavior would mean the beginning of a downward spiral of the sort that often results in her inability to leave her bedroom. Now, however, it might simply mean that she’s assigned a higher priority to the pursuit of human contact on the couch with K.

In either case, Dan will soon arrive to handle whatever needs to be handled, and I have this day to enjoy a quiet home in which there no longer lives the lonely young woman who watched movies all day, and ate microwaved chicken nuggets and chocolate chemical cake, and pretended to be Anna Popplewell from the Narnia movies in an online game with someone who pretended to be James McAvoy—instead of learning to be a human who is truly attached to other humans.

For me, a pretty good day.

Lesley Quinn is an essayist and writing coach who specializes in assisting high school seniors create deeply felt and compelling college application essays. Her work has been published in The New York Times, The San Francisco Chronicle, and numerous literary magazines and anthologies. She lives with her husband, a psychologist, and her daughter when she’s visiting, in Berkeley, California.

When Oliver was still an infant and toddler there was never any
doubt—any question, even—that I was the expert on my child. I
never would have thought to ask anyone for input on my parenting.
I am a believer in attachment parenting and that’s what I did:
I breastfed him until he chose to stop at two and a half, he never slept
anywhere but with me until he was ready to move to his own bed,
and I carried him close to my heart in a sling until he grew too heavy.
I never let him cry without attending to him. I wanted him to feel
secure, attached, and not alone in this world. That was the best way,
I thought, to help him feel confident enough to develop independence.
I never would have thought that someone understood Oliver better than I.

After the diagnosis, my grasp on motherhood, already shaky
from the intuitive knowledge that I somehow wasn’t fully meeting
Oliver’s needs, loosened. Or perhaps it became undone altogether.
All of the difficult parenting issues that we had faced up until this
point suddenly became pathological. It wasn’t his personality that
made him so incredibly stubborn; it was the autism. It wasn’t that
I had not been fully equipped with the information that I needed
to parent Oliver well; it was the autism. Suddenly there were others
(psychologists, social workers, teachers, therapists) who claimed to
understand Oliver, who could help us navigate life with this little boy
of ours more successfully.

In the wake of the diagnosis, I found myself leaning heavily
on the advice of those professionals. During a time when I felt unmoored
and lost, it became easy to turn to people who spoke with
such confidence. And yet, I now see how much our parenting strategies
changed, the dynamics in our house shifted; we were parenting
by committee. I see how vulnerable we all were and how we lost
something intangible and yet so valuable. Here I was, a mother who
had carried my child in a sling for his first year of life so that he
could feel and hear my heart beating as he had in the womb, and I
had somehow agreed to let him “work” with therapists for thirty-five
hours per week, shut away from his family and our daily activities.
The trust and attachment that I had worked so hard to foster since
his birth had lost its priority to all things in service of the autism.
Over a period of just a few months we had lost whatever remaining
grip we had on our feelings of competency as Oliver’s parents.

The essay continues in the print version of the book, but I can tell you here that Christine most definitely did navigate her way back to her parenting by her own intuitive wisdom. Her update:

A few weeks ago when a fat white envelope bearing the return address of Woodbine Press arrived, I eagerly opened it, excited to hold in my hands the much anticipated Gravity Pulls You In. Little did I know that I would soon have competition for the book. Almost immediately Oliver claimed it for his own. Perhaps drawn to the colorful image on the front or the weight and size of it or the shiny cover stock, Oliver has carried the book with him nearly constantly since it arrived. At night, after he falls asleep I sneak like a thief into his dark room and grope for it under the covers so that I get my fair share. Tonight I snapped a picture of him as he sat at my desk holding it, then noted that he was following the line of the word Perspectives over and over again with his index finger. How apropos, I thought, for the boy who has compelled me, again and again, to carefully consider – and reconsider – so much of what I once thought I knew.

As I write these words, Oliver is off on a bike ride with his father and younger brother. They navigate the streets of our town with incredible ease and grace. If you were to ride along with our family sometime you might be struck by the joy written on our faces. Oliver is in love with movement, speed and balance; his father and I are in love with the sight of our boy totally unencumbered by the many things in life that are so difficult for him. I’m not the first to describe parenting a child with extra needs as a journey but when we ride together I am reminded of what a joy it is to navigate together, focusing on nothing but the road in front of us. In the face of so much that can be difficult, it is often a daily challenge for me to keep this perspective. All the better that I have a boy who can, apparently, point it out for me from time to time.

Christine Stephan, a program certified RDI® consultant, lives in Virginia with her husband and three sons. She and her family can often be found navigating the streets of her hometown by bicycle.

Ann Douglas is a phenomenon, a passionate advocate of families–kids of all ages and their parents. Her essay,  ”As Great as Trees” captures the period following her son’s dismissal from fifth grade just before he was diagnosed with Asperger’s.

Ian says goodbye to his classmates on a Wednesday afternoon,
three weeks into fifth grade. His classmates present him
with a piece of goodbye cake. Conveniently, his birthday has fallen
the day before, so they are able to save him a piece of the birthday
cake they ended up eating without him—the downside of being suspended
from school on your very own birthday. When the decision
to suspend him evolves into a request (nonnegotiable) that we withdraw
him, the birthday cake morphs into goodbye cake to go.

Everyone stands at the front of the classroom, while I snap a few
photos at Ian’s request. The teachers and the principal try to smile and
pretend to look relaxed, but they come across as awkward and uncomfortable
when I look at the photos later on. And as for the kids: they
are either glancing sideways at one another and snickering or standing
frozen like statues who have been asked to play themselves in some
mime version of an ordinary day at school. The boy Ian hit, resulting
in his suspension, is standing next to him, making like they’re best
buddies. Poor kid. He’s probably as confused as Ian is, if not more. I’ll
have to tag this batch of pictures “Theatre of the Absurd.”

Getting out of the building isn’t as easy as snapping the pictures.
By the time I come back for Ian’s third load of stuff—how can
anyone accumulate three loads of stuff in three weeks of school?—he
is crying. Hard. I hug him and guide him out of the school, doing
the shuffle-walk that is the only option when you’re holding on to
someone for dear life.

As we make our final exit, we pass a wall-sized bulletin board
gleaming with photos of shiny apples and the smiling faces of
every child in the school except my child. I guess he wasn’t the
right kind of apple.

Ann had concerns about her son when he was two but it took eight more years before he was diagnosed correctly. From later in the piece:

Eight years is a long time to wait to get the correct label for
your kid and even longer if you’re the little boy waiting for someone
to solve the puzzle that is your life. It means added days, weeks,
months, even years of being teased and tormented, mislabeled and
misunderstood; of having your reputation cemented in your neighborhood
and at school; of starting to believe that you’re bad or defective
or crazy—or all of the above—because you’ve heard people say
that about you often enough.

(The essay continues in the print version of Gravity.)

Writers witness our own experiences. It is through reading their words that we often find our own clarity and direction. It is also through writing that one finds our way through turbulent times as Ann describes in her update:

I wrote this essay — “As Great as Trees” — a few months after my then 10-year-old son Ian was diagnosed with Asperger’s syndrome.

I was dealing with so many powerful emotions at the time; and writing the essay gave me the opportunity to start sorting through some of the confusing thoughts that were spiraling around in my head.

As I re-read it, I’m surprised the essay is as coherent as it is – although you will note, if you read it in its entirety, that I jump from scene to scene and my emotions shift just as quickly as I describe the series of events that changed everything for our family, suddenly and unexpectedly.

If I were to write this same essay today, I might be tempted to edit out some of the emotional lurches, for the sake of clarity. But that’s not how I experienced it when I was living it. I think it’s more authentic in its raw, real-time form.

Since this essay was written, I have found my parenting equilibrium again. I have connected with other parents who have kids on the spectrum. I no longer feel scared or uncertain when I think about what the future will hold for Ian or the rest of the family. How could I? He is thriving and we are living mostly happily ever after in the new normal.

Ann Douglas is the creator of the internationally bestselling The Mother of All® Books series and The Mother of All Solutions, the coauthor of The Unofficial Guide to Having a Baby and Trying Again: A Guide to Pregnancy After Miscarriage, Stillbirth, and Infant Loss, and, along with her daughters, wrote the award-winning body image book for teens, Body Talk: The Straight Goods on Fitness, Nutrition, and Feeling Great about Yourself. She contributes to numerous pregnancy and parenting magazine in addition to her own columns in Yahoo! Canada, and Conceive Magazine.  Ann is the mother of four children. She lives with her family in Canada.

As the parent of a child who failed to sit up, walk or talk when expected, I faced the question of what to call his condition. Never fond of euphemisms, I still dreaded the harsh sound and still harsher meaning of the “r” word and yearned to call my son anything else. At the same time, I wanted to say the word before it was said to me. More than anything, I hoped my son would never hear it, would never know this cruel fact about himself.

Maggie’s story “Joyful Noise,” appears in the anthology Love You to Pieces: Creative Writers on Raising a Child with Special Needs, edited by Suzanne Kamata. Kast is also the author of and The Crack between the Worlds: a Dancer’s Memoir of Loss, Faith and Family (Wipf and Stock, 2009).

Day 1. For the last six months, my developmentally disabled
son, Stefan, has been trying to make himself throw up, sticking
his slender hand down his throat to the wrist, and he can’t tell us
why. He knows he shouldn’t. He will even tease us with a hand-to-mouth
feint, a crafty look in his eyes, but he can’t say what compels
him. Today we have an early appointment at the GI Clinic of a large,
teaching hospital, where he’s been under treatment for Crohn’s,
inflammatory bowel disease, for eight years. I’m apprehensive,
knowing he continues to lose weight.

“Hi, Pumpkin,” says a nurse. “How are you?”

“Hi,” says Stefan. “How you?” He steps forward to shake
her hand with a slightly uneven gait, one foot turned out more
than the other, then follows her into an examining room. Neatly
dressed in summer shorts and a T-shirt, he’s thirty-four years old
but less than five feet tall and beardless, his hair gelled into little
spikes. Suddenly he begins to shiver in a way I’ve never seen anyone
do before: deep, bone-shaking tremors that run through his
whole body, and I’m aghast. His gastroenterologist appears in the
doorway, takes one look and says, “ER—now.” We hustle Stefan,
frightened and screaming, into a wheelchair, grab the hands he’s
trying to put down his throat, and hurry down the hall. The doctor
explains as we go that chills called rigors (pronounced rye-gores)
are caused by an immune response in which the set point for body
temperature in the hypothalamus rises, and the body shivers in an
attempt to warm up.

“Can’t we go directly to Admissions?” I ask the doc, hoping to
avoid the busy, impersonal ER where no one knows or has time to
understand Stefan.

“It wouldn’t be fast enough,” he says, explaining that rigors are
a common symptom of septicemia, or blood poisoning, and require
immediate treatment. Blood tests soon confirm that diagnosis.

“How do you get septicemia?” I ask an ER nurse as she hurries
by our curtained cubicle.

“From infection in any part of the body,” she says. “Often from
hospitalization.” Vaguely I remember hearing about resistant organisms
living in hospitals, but I can’t stop to think that the help Stefan
needs might come bundled with lethal exposure. He’s trying hard
to put his hand down his throat, and it takes all my strength and
concentration to prevent him. We’re both scared, and sometimes I
think swallowing his hand has become a response to fear in addition
to whatever is going on in his stomach. Soon his heart races out of
control and an ER doctor comes in and starts massaging his carotid
artery, watching the wall, not looking at Stefan.

“I’m not trying to choke you,” he says, “I’m just trying to get
your heart rate down.” I don’t understand how this works, and Stefan
even less, but he lies fairly still, eyes searching for escape like the
eyes of a horse in a fire. His usual patter in the hospital—“Almost
finished? Go home soon?”—is oddly absent. The bottom falls out of
my stomach and my world as I realize that he’s sicker than he’s ever
been before.

From Maggie:

“No Pity,” my contribution to Gravity Pulls You In, deals with my son S.’s hospitalization and final illness, but in most ways this time was the polar opposite of his life. Sick, he was quiet, weak and depleted; well, he was enthusiastic, outgoing, and humorous. Despite limited speech, he loved to engage strangers in conversation and could easily persuade them to buy him a candy bar or a coke. His passions ranged from watching the clothes go round in a front-loading washer (at age six) to joining in rhythm jams with his brother’s rock band (as a teen-ager) to church, concerts and anything with music, the jazzier the better.

In the hospital, S. was isolated, connected to the fabric of his life only by me and the occasional music-loving nurse-tech. But most of his life he was enmeshed with others, first at home, where his closest brother taught him to walk by constructing a tricycle-wagon contraption that allowed S. to hang on, toddling behind while the older boy rode.  Always engaged in family ritual, S. learned at a young age to raise a glass for a toast and say, “Posit.” Though symbolic action was hardly his strong point, he watched when we acted out gifts in charades and tried to guess, enjoying our raucous applause when he got something right. Our other kids always looked out for him and included him in family life, from trick-or-treating to cooking to camping out. Stories about his early schooling, first communion and moral development can be found in my book, The Crack between the Worlds: a dancer’s memoir of loss, faith and family (Wipf and Stock, 2009).

S. loved to make his father’s favorite, Liptauer, a spread made with cream cheese, blue cheese, mustard and Worcestershire sauce, and he often asked for it after his father’s death. This love competed with his fondness for music, creating the conflict in “Joyful Noise,” the story anthologized in Love You to Pieces (Beacon Press, 2008). And he was uniquely skilled at finding remote items in our refrigerator, filled with leftovers and supplies of a six-person family. “Find me the mustard,” I’d say, and he would shift items carefully from side to side until he found the missing jar.

S. participated fully in his group home, El Valor, where he lived from age eighteen. At his funeral, his loving housemates mourned him by placing flowers on the coffin, shuffling or striding to the altar in an uneven line, erasing the isolation of his time in the hospital. And this tribute brought to mind the way he had burst into applause at my mother’s memorial the year before, reacting to a Dixie combo that played some of her favorite tunes. As we followed S.’s coffin out of the church where he’d loved and been loved, we clapped as well as wept, singing “This Little Light of Mine.” I could almost hear his excited yips of joy.

Maggie Kast is the author of The Crack between the Worlds: a dancer’s memoir of loss, faith and family (Wipf and Stock, 2009). Her fiction has appeared in The Sun, Rosebud, Nimrod, Paper Street and others and her essays in America, Image, Writer’s Chronicle and ACM/Another Chicago Magazine.  Her work has received two Pushcart nominations and a Literary Award from the Illinois Arts Council. Excerpts from her book can be found at www.maggiekast.com; links to reviews at ritualandrhubarbpie.blogspot.com.

THE STONE

was heavy.
The family carried it
with them, all day.
Not one
could bear
its weight, alone.
Yet how they loved it.
No other stone had
its denseness,
its particular way
of bending the light.
They could not take
the stone
out in public,
had to keep it home,
let it sing songs
in its own strange language,
syllables of schist and shale.
When the mother’s back ached,
the father took the stone
for a while, then passed it
from sister to sister.
The stone
became a part of them,
a bit of granite
in the spine,
a shard of calcite
in the heart.
Sometimes
its weight
pressed them
thin, transparent
as wildflowers
left in the dictionary.

Sometimes it was
lighter
than air.
The stone
did not talk.
But it shone.

From Barbara:

One of the things I hoped to convey in this poem is how we’re all in it together, our entire family, which now consists of two married daughters, their spouses, and grandson.  Having our son David, now 26, in our lives has made us all more compassionate.  Our little grandson Dan was singled out by his pre-school teacher for having done more for the Inclusion kids in his class than all their therapists combined.  No one told him to do this; he just instinctively knew that his Uncle David is different and doesn’t talk much. But they share common interests:  Sesame Street, Star Wars, the Beatles. Dan refuses to give up on getting Dave to talk.  And he often succeeds.

In the poem, I have the myth of Sisyphus in mind, but since you’ve given me this soapbox, I want to make it clear that Dave is not the burden; rather, it’s his future, the one we have to provide for after we’re gone that weighs on me, especially since nothing is currently being funded—no group homes, no job coaches, no sheltered workshops, no transportation. . . .

Sorry to be grim.  But I think everyone needs to know that during the eight years of the Bush administration, ALL social services dollars for new clients went to fund the war, and so far, we haven’t gotten them back, so no one new coming into the system is getting federally funded.  Medicaid is the funding stream for group homes; all these “taxpayer revolt” groups out there whose mantra is “no new taxes” really mean “no new services” for your kids and mine.

Here’s another poem that was taken, but not used:

GRATING PARMESAN

A winter evening,
sky, the color of cobalt,
the night coming down like the lid on a pot.
On the stove, the ghosts of summer simmer:
tomatoes, garlic, basil, oregano.
Steam from the kettle rises,
wreathes the windows.
You come running when I reach for the grater,
“Help me?” you ask, reversing the pronouns,
part of your mind’s disordered scramble.
Together, we hold the rind of the cheese,
scrape our knuckles on the metal teeth.
A fresh pungency enters the room.
You put your fingers in the fallen crumbs:
“Snow,” you proudly exclaim, and look at me.
Three years old, nearly mute,
but the master of metaphor.
Most of the time, we speak without words.

Outside, the icy stones in the sky
glitter in their random order.
It’s a night so cold, the very air freezes flesh,
a knife in the lungs, wind rushing
over the coil of the planet
straight from Siberia,
a high howl from the wolves of the steppes.
As we grate and grate, the drift rises higher.
When the family gathers together,
puts pasta in their bowls,
ladles on the simmered sauce,
you will bless each one
with a wave of your spoon:
“Snowflakes falling
all around.”
You’re the weatherman
of the kitchen table.
And, light as feathers,
the parmesan sprinkles down,
its newly fallen snow
gracing each plate.

This poem was inspired by my son with his intuitive grasp of metaphoric language. I also wanted to show another form of Inclusion; like other sons of Italian-American immigrants, he’s grating cheese with his mother. There’s a layer of irony here because when David was around 8, I discovered the gluten and casein-free diet. He made huge gains and we’ve never looked back. So my meatballs no longer have Parmesan in them, nor slices of stale bread soaked in water, then squeezed and shredded.

When I entered the world of autism as a writer, I had no idea how it would influence me. I’d been an adjunct for years, and would get evaluations that said, “Ms. Crooker could teach anyone anything.” But now I had a child I couldn’t teach a single thing to; so he taught me just how to be.

I’m pleased to report that David does have a life, thanks in part to the mom-from-hell (that would be me) who pushed and pushed for our school district to embrace Inclusion (which they did, when he was in third grade). Without any real early childhood education (there was little or no educational component to his program behind closed doors in segregated special ed), he entered the regular education world (always with an Inclusion aide), and graduated with a “real” Pennsylvania high school diploma (as opposed to the “attendance” one most special ed kids receive). He went to the prom, had a graduation party, etc.

He has two jobs, one at a department store in shipping and receiving, one in a sheltered workshop. He sings in the church choir and continues with karate in a regular adult class. His social life is comprised of family, period. But this doesn’t seem to bother him; one of his pluses is that he doesn’t realize his parents aren’t “cool.” His household jobs are to mow the lawn and shovel snow and he does these without being asked. Except for his inexplicable taste for Lawrence Welk re-runs (every Saturday night), he’s pleasant to be around, and his off-beat humor adds a certain ‘je ne sais quois’ to our lives.

Barbara Crooker’s book, Radiance, won the 2005 Word Press First Book Award and was a finalist for the 2006 Paterson Poetry Prize. Her second book, Line Dance (Word Press, 2008), won the 2009 Paterson Prize for Literary Excellence. Her third book, More, will be published later this year by C & R Press. Her poems appear in a variety of literary journals and many anthologies, including Good Poems for Hard Times (Garrison Keillor, editor)(Viking Penguin). She has won a number of awards, including the WB Yeats Society of NY Prize (Grace Schulman, judge), the Thomas Merton Poetry of the Sacred Prize (Stanley Kunitz, judge), and the Rosebud Ekphrastic Poetry Award. She is the mother of a twenty-six-year-old son with autism.

Yet, all the poetry in Gravity stands alone and Aileen Murphy’s poignant, “Proverbs 13:24″, is no exception. The view that we can snap our children out of their ‘bad behavior’, discipline them in such a way so they can ‘play well with others’ is, unfortunately, one of the most common misunderstandings about the spectrum.

Proverbs 13:24

He who spares the rod hates his son. . . .

She called to say we needed to talk
knocked on the front door with one fist
held her Bible in the other
Your three-year-old needs spanking
she smiled
he pushes too much
smaller children in his space
does not play well with others
I gaped, fascinated
having lived in the south for not quite a year

I held the door open with my body
waiting while she gathered her things
She and her husband spanked their children
she urged, finger still on a Bible verse
the book closed around it
as she hurried her purse strap over her shoulder

Upstairs, I spied from his doorway
as he lay, face on the floor
brio train cars rolling past his eyes
a tune coming from his chest

One year earlier a priest had said the same
nodding confidently, like I would accept his words
based on his profession, his position
as so many others do, as my mother had
when she spanked my child once
when we were out at a movie

I knew nothing
just to not add pain to his curious world
just that he was happy alone
in his sunlit, toy-strewn room
singing alphabet songs
without others pressing into
and popping the bubble of light
around him

From Aileen:

I have read the whole collection of Gravity Pulls You In, and I have never felt like so many people on the planet understand me, as I do now.  I feel like there are so many strengths and insights and ways of seeing that our children have given us, all of us.  The voices of mothers and fathers in here help me to breathe easier.  The stories of the children, young and older tell me that we are all going to be okay.  One good friend of our family who has a son about eight years older than our son, and who also has Asperger’s told us once that what it comes down to is that it is all just parenting.  We become the parents we need to become, just as any people do.

I wrote this poem probably eight or more years after the event itself, but everything was so solid in my mind about that insane visit by another parent from a play group we had been involved with, that it was not hard to remember details.  I did see this same woman a few years after she came to my house with her Bible, and she sort of apologized, although it took the form of blaming another parent in the group who had put her up to it.

The amazing thing is that when she called to ask if she could come over, I had had the worst week ever with my son.  While visiting another person’s house, he had seen a baby standing up in a crib and had pushed the baby backwards, which was the end for me.  That day, I took him out into the grass and told him to sit there while I got my things together, and not to move.  The baby was okay, but I drove home crying and telling myself that until I figured out what was wrong, I was not going to ever bring him back to another play group or any gathering where there were other children.  When the Bible mother called me, I told her “If this is about my son and his difficulties with other children, don’t worry.  We are not coming back.”  And she assured me “No, no, it isn’t that–it’s just fine–I just wanted to talk to you!”  So, stupidly, I invited her to come over, and the poem tells the rest.

My son these days is a high school senior who will be going to college next year.  He is very independent, and has been all throughout high school, in getting all his homework done, enjoying movies, keeping his room neat, and taking care of our cats, who he loves.  Our cats also love him.

Years ago, when he was young, maybe a little older than the time of the poem, my parents were coming to visit us, and while they were driving, my mother said something she had said before–that she hoped that her grandson would let her hug him.  She and my husband’s mother had both noticed that they could not really get warm, happy hugs from him, from the very start.  My father told her one of the wisest and most perceptive things we have ever heard about our son.  He said to my mother:  ”Your problem is that you come in the door and lunge for him.  You can’t do that with this child.  He is like a cat.  You don’t lunge for a cat.  You have to come in, take your coat off, sit down, have a drink, have some conversation, and then the cat comes to find you.  He might come close and then closer, and pretty soon, he will be in your lap.  You have to be patient.  Our grandson is like a cat.”  And that has turned out to be very true:  Quiet, independent, smart, thoughtful, and able to function just fine with minimal human interaction!

(If you have never seen this book, it is great: All Cats Have Asperger’s Syndrome by Kathy Hoopmann.  She also has a book called All Dogs Have ADHD.)

When my son was first diagnosed, I mostly cried in the car, whenever I was driving, usually taking him to school, driving to work, or shopping.  Not like out loud sobbing, just quietly, so I could still talk to him and hear what he was saying.  A song on one of the tapes we always had in the car was Kermit the Frog singing “It’s Not Easy Being Green” which would tear me to pieces. On the surface, you think it is sad to be green, to be different from everyone else–but as it turns out, he ends up being happy to be just what he is: “I am green and it’ll do fine, it’s beautiful. And I think it’s what I want to be.” And this is how we feel about our green boy.  He is fine, he is beautiful, and he is what he wants to be.

Thanks Kyra and Vicki for letting me be a part of this book.

Aileen Murphy is the author of a chapbook, There Will Be Cats (Finishing Line Press), and the Assistant Director of Creative Writing at Virginia Tech, where she has taught writing since 1994. She is also the Co-Director of the Southwest Virginia Writing Project. She lives with her husband, Paul, and her two children in Blacksburg, Virginia.

A couple of posts from my blog Autismland were revised to create my essay “The Wages of Autism.” All the posts—”Autism Hearts Club,” “Ache,” The Wages of Autism”—touched on similar themes of love, loss, and bittersweet, as conveyed through snippets of life with Charlie, especially those concerning Charlie’s communication and language.

Talking and words have always bedeviled Charlie. He learned to round his lips and pull his tongue and move his teeth to form each vowel sound, each consonant (initial and final—the latter were far harder), one by one. He was nearly 8 years old when he was could form most of the sounds of American English (not that he could always do so on command). Charlie’s words being so few, each one seems a precious coin. New ones heard for the first time—”taco,” Charlie said just a few days ago—equal larger denominations. Indeed, as I wrote in The Wages of Autism,

The exchange rate in Autismland is more than a bit lopsided. To make these quick currency conversions into Charlie-pence (or kronas, or euros, or rupees, or ren min bi), I have had to take several crash courses in a strange and curious economics, a mathematics in which I’m not always sure a point isn’t a line or a curve…

Yes, it was years and years and years of therapy and school and practicing and a few other ingredients (bike-riding, I suspect) that helped Charlie “have words.”

Like many parents, Jim and I seem forever to find ourselves having to pay off something or other. And yes indeed, while the exchange rate can get pretty high, the payoff is always worth it: This was the theme of “The Wages of Autism,” and a theme running through my writing about Charlie all the time.

Nevertheless, I have to confess, I kept forgetting that I’d titled my essay “The Wages of Autism.” Up until I saw my essay in the book Kyra and Vicki so lovingly put together, I thought I’d called my essay “Autism Fragments.”  This was the title of another old blog post that compared reading a fragment of the ancient poet Sappho of Lesbos with understanding, “translating” Charlie’s language, both verbal and non-verbal.

To read those three words of Sappho, I need my big Greek dictionary, a couple of commentaries, several translations, a few books and essays about Sappho–the same amount of reference materials and resources I need to read Charlie, not to mention a home ABA therapy team, Charlie’s teachers and school behaviorist, two SLPs, our VB therapist.

“Fragments”: Little bits of things, parts and pieces. “Fragments” can describe Charlie’s words, his language that provides just the very crystalline tip of the iceberg of what he’s striving to express. “Fragments,” you could say, are what you get from those wages of autism, little bobs and bits.

So little, for so great an effort, some might say.

But just as, to a classical philologist, a shred of papyrus from the sands of Egypt with a few words from a poem of Sappho is sufficient to spawn a career-making article in a peer-reviewed journal, so a couple of words from Charlie make long labors and long, long days not simply bearable, but warm and bright and rich.

What seems like fragments, broken things, to some, are—thanks to all we’ve lived through with Charlie—jewels we treasure, and keep close to our hearts.

Kristina Chew is an Associate Professor of Classics at Saint Peter’s College in Jersey City, New Jersey. She is writing a book (working title: We Go with Him) about autism, language, and translation; has published a number of articles about literature about autism, disabilities studies, and literature; and has made numerous presentations about advocacy, teaching college students who have ASDs, and literature about autism. From 2006-2009 she wrote two widely-read blogs about autism, Autism Vox and the autism blog at Change.org; she now writes daily about life with Charlie on her current blog, We Go With Him. She has also published a translation of Virgil’s Georgics (2002) and written about classics and multiculturalism. Her son, Charlie, was born in 1997.