He Has Autism

Posted on April 21, 2017 by CNF • Posted in Articles Page, Highlights, Slider Content • Tagged autism, family, jennifer smyth, motherhood, parenting, siblings • Leave a comment

By Jennifer Smyth

After her 8th birthday party in October, my big hearted, brown eyed daughter, Holly, decided this was the year she wanted to educate her classmates about Autism, and more specifically about her twin brother, Nick. A petite girl, and classmate, named Emily had been the impetus that chilly fall night, arriving at our house overwhelmed by Nick’s jumping and loud shrieks of excitement, but leaving with an understanding of him.

“Mom, I want to explain Nick to people, but not because he is doing something they think is weird.” She had become an accidental interpreter for her brother, fielding questions such as “Why won’t your brother say hi to me?” or more hurtful ones, “What’s wrong with him?” from peers on the school playground and from strangers at the grocery store, who apparently felt it was OK to turn to my 8-year-old and say, “What’s he so mad about?”

“He has Autism” had been her dump and run response since we had “given” her that response language in kindergarten. But there had been lots of swings, slides and checkout counters since then, and it just wasn’t enough anymore.

“It doesn’t help to say he has Autism, if no one knows what it is. And I don’t like talking about it in front of Nick. I think it hurts his feelings.” With her teacher’s blessing we chose a Tuesday in April, during Autism Awareness Month, to talk to her class. The night before, I scattered picture books on the dining room table. Kneeling on the chair she leaned forward on her elbows to study each one. Her long brown hair still wet from her bath dripped onto the table as she declared, “This one” with confidence, holding up a brightly illustrated book told from the point of view of a twin sister, whose brother has autism.

“Great choice. Which one of us should read it?” I asked.

“I will,” she said.

Still riding the wave of excitement in the morning, she slid the book into her backpack along with the rubbery blue wristbands with the words Autism Speaks, It’s Time to Listen that we purchased for the class. “I’ll see you in two hours,” I said as she slid out the car door, blowing me a kiss.

Minutes dragged as I cleaned the kitchen and then drove aimlessly up and down streets so I would arrive at just the right time. Waiting outside her classroom door, my stomach churned. Maybe this was a bad idea. What if I cried in front of all these kids? Her teacher, Miss Howard, smiled and welcomed me inside. Holly hid her face in my shoulder and hooked her arm through mine as we situated ourselves on chairs facing the classroom filled with 23 2nd graders who were negotiating their spots on the rug. Emily smiled as she crisscrossed her legs at her chosen location at my feet.

Holly leaned her mouth to my ear, using her hand to shield any would be lip readers, and with a whispery warm breath said, “I don’t want to read by myself, let’s do every other page.” I nodded.

“Some of you have met Holly’s twin brother, Nick. He has Autism, and since April is World Autism Awareness Month, we wanted to share some things with you.” Hands started flying up. Some with extra wiggly fingers as if begging to be called on. “We’re going to start with a book,” I said, as their teacher motioned them to put their hands down. Most of them did. Holding the book up high for everyone to see, Holly read the title “My Brother Charlie” and then the first page. She hesitated, waiting for me to read the next one. “You keep reading,” I said. Her voice grew stronger and steadier with every page. “When we were babies, I pointed out flowers and cats and fireflies … but Charlie was different.” The words of the story could have been her words. It WAS her story. So when she read the line, “One doctor even told Mommy that Charlie would never say ‘I love you'” my throat tightened, I chewed the inside of my mouth and tried to find a point on the wall to stare at, but instead my eyes locked on her teacher who had tears running down her cheeks. Hold it together. This is not about you.

Shutting the book with finality, Holly looked to me. I turned to the class. “Any questions?” Almost every hand went up

“You said it’s hard for him to talk. Does he have a voice box?”

“Does he go to a special school?”

“Is Asperger’s the same as Autism?”

“How does he tell you what he wants?”

They used words like sickness, and disease.

“Will he grow out of it?”

Sitting up straight now and addressing her class, Holly called on students and answered the questions as fast as they were asked. Emboldened by her authority, she went for a little shock value. “He doesn’t get embarrassed like we do. He could walk down the street naked and it wouldn’t bother him.” She giggled when she said it, knowing that she was kind of getting away with something by saying “naked” in her classroom.

And she told the truth. “He will yell and scream when he wants something. It doesn’t matter where he is or who is there. But he’s not a brat, he is sweet. His brain just works different.”

“Noooo,” they protested when Miss Howard announced it was time for recess. Heading towards the classroom door they blurted out the tidbits they still wanted to hear more about as they passed me. Holly had already skipped off with her friends, but there was one boy was hanging back, a sweet class clown of a boy, waiting for my attention.

“Hi Jackson.”

“My grandpa writes poems and there is one I think you would like.”

“Tell me about it.”

“It’s about a guy who accidentally walks into a spider web and thinks it’s really gross. But then he takes a step back and looks at it and realizes how beautiful it is. Anyway, you might like it.”

“Thank you Jackson. That’s beautiful,” I said, dumbstruck by the deep connection he had made. He ran out the door with the rest of the kids.

The next morning, watching my beautiful spider web of a boy saunter into school, my phone dinged the arrival of an email. It was from Emily’s mom.

Here is a photo I took in Emily’s room. After the Autism Awareness talk she came home and taught her dolls all about it!

There were two notebook pages taped up to an easel. Both had “atsam awarnis” written across the top with bullet points from the class conversation. My favorites were “likes to fluff hair” and “they hear everything you say.”

Emily had never met a child with Autism until she met Nick and since then we have met another family with an Autistic child and I don’t think Emily even blinked. Thank you, Jennifer and Holly for raising awareness.

PS I’ll work on her spelling!

Best,

Mindy

Jennifer Smyth is a work in progress. She lives in Fairfield, Connecticut with her wonderful husband and two amazing kids.

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Why I Stopped Reading Parenting Books

Posted on June 23, 2016 by CNF • Posted in Blog, Brain, Child, Featured Blog Posts, Slider Content • Tagged advice, autism, Debbie Urbanski, Dr. Sears, parenting advice, The Baby Book, What to Expect • Leave a comment

By Debbie Urbanski

When I found out I was pregnant, I made some promises to myself. I was going to be a great mother. Being a great mother meant never raising my voice. It meant creating a house of quiet and calm. It meant playgrounds and crafts and my children having play dates all the time. I wanted to give my kids a different childhood than the one I had. As for how to become this kind of mother, I had no idea, so I decided to read some parenting books.

Thankfully there are a lot of parenting books.

I started with The Baby Book by Dr. Sears, which advocates in 769 pages for babywearing and lots of cuddling. This sounded nice. I bought several slings and a baby carrier before my son was born. When my son was born, he cried all the time, whether he was in the sling or not. His cries were neither small nor cute. He was really loud in fact. When he wasn’t crying, he wanted to be nursing. He began nursing all through the night and I wasn’t able to sleep while he was nursing so I became non-functional. A neighbor told me about Dr. Ferber of the rather notorious “cry it out” method. “Do babywearing mothers use Ferber?” I asked this neighbor. “Sure,” she said. We used Dr. Ferber’s book Solve Your Child’s Sleep Problems as a guide to ferberize our child, meaning we set our infant in his nursery, in his crib, and we shut the door. Periodically we checked on him but we were not to pick him up until the morning. Dr. Ferber promised the child would only cry in his crib for a few nights. My son’s crying at night went on for weeks or longer. I don’t remember the exact length of time as I’ve blacked out that part of my life.

This was my first clue that the advice in parenting books was not always accurate for my particular child.

I ignored the clue.

My son grew into a strong-willed child who protested transitions and change. Positive Discipline led to Raising Your Spirited Child after which came The Explosive Child, which recommends collaborative problem solving and negotiation. Instead of problem solving collaboratively, my son screamed at me. Still, I was convinced that some book out there contained the secret to parenting my son. It was only a matter of finding the correct book.

After my son was diagnosed with mild autism, I became buried in an avalanche of books: Asperger Syndrome and Difficult Moments; The Thinking Person’s Guide to Autism; anything by Temple Grandin; 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s. Mothers at social skills classes recommended more books and even some DVD’s: The Calm Parenting University and Stop Defiance Now! and The Nurtured Heart Approach.

Soon every moment of the day became a moment to improve my child using book-approved methods. My nightstand, and in fact my life, had become a mess of notes and parenting books. I felt like I was standing on a cliff beside my son, about to jump, and here I was tying pages of books to our arms like they could be wings.

It was unsustainable, of course.

One morning I woke up one morning and gave all those books away.

The moment the books left my life, I felt like a weight had been taken off of my back.

In some ways, I still miss these books. They were my addiction, my habit. They gave me an easy hope. If I only read enough, and read the right books, and managed to remember the advice such books were telling me, my son might turn into a different child, an easier-to-manage child, and I would end up being that parent, the warm playground-loving parent I hoped I would be

“No,” my child’s therapist corrected me. She said my particular child doesn’t need that parent I imagined, the one who did crafts and gave lot of hugs. “Your son doesn’t even like hugs,” she reminded me. True. My son needed a firmer parent who can teach him how to follow instructions and use silverware. A parent who implements incentive plans and sticks to them and is able to ignore the insults while keeping her temper in check, while using physical guidance if required.

That’s the parent I need to figure out how to be.

Unlike those parenting books, my child’s therapist has never promised me a miracle. Sometimes she asks me what I think I should do. No parenting book ever asked me this question.

Recently, my mom wrote me an email containing some ideas for raising my son. I wrote back and explained I was taking a break from outside parenting advice, that I was just working with my son’s therapist right now and trying one new thing at a time. Progress was slower this way, nobody was expecting a cure, though at least there was progress. My mom and I did not talk for months after I sent that message. She thought I didn’t need her in my life. What I needed, I later told her once I finally called her, is for someone not to tell me what to do, but to tell me I will know what I’m doing someday. To tell me I can figure this out. This is the message I wish more parenting books contained: that being a nurturing mother does not mean mimicking other mothers. It means being the mother your child needs, and what your child needs may not resemble anything that can be contained in a book.

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Debbie Urbanski’s writing has appeared in Orion, The Sun, the Kenyon Review, Nature: the International Weekly Journal of Science, and Terraform. She holds an MFA from Syracuse University. Read more of her work at: debbieurbanski.com or find her on Twitter @debbieurbanski.
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My Kids Does That, Too

Posted on November 12, 2015 by CNF • Posted in Blog, Featured Blog Posts • Tagged autism, autism spectrum, Laurie Foos, occupational therapy, parenting, PDD-NOS, speech therapy • Leave a comment

By Laurie Foos

My son was standing at the window looking out at the cars when I knew. He was four years old and talking to himself, repeating bits of dialogue from television and things he’d heard during the day, a practice I’d learned much later is called “scripting.” I sat next to him by the window as he leaned against the glass. Together we watched the cars whizzing by on the busy road in front of our house.

“See that blue one? Look at the red one,” I said, and he kept looking out at the cars, not at me, and said, “See that blue one? Look at the red one.”

I tried to get him to look at me, but he wouldn’t, even when I said his name. Zachariah.

“The world is a confusing place for you, buddy, isn’t it?” I said, and for a moment it was just the two of us looking out at the cars and saying nothing.

That morning the speech teacher at his developmental preschool had called, a call I realized much later she must have rehearsed many times before picking up the phone. I no longer remember her name, but I know she was young and pretty, as most of my son’s favorite therapists were, and as soon as I heard her voice on the other end, I knew why she was calling.

“I wanted to touch base with you about Zachariah,” she said. She paused, as if waiting for me to cut in, and when I didn’t, she said, “I’m seeing some of the things we talked about, some of those things I mentioned back in January.”

I won’t make you say it, I thought, even though, since everything had begun, the Early Intervention, the hours each week with my son strapped in a booster seat while therapists tried to coax him to say new words, to make eye contact, to feed bottles to baby dolls and send Diego riding an elephant, that all along, I’d been trying to make someone say it. Your son is on the Autism spectrum. I’d spent so many late nights doing Google searches, trying to figure out why all the therapists who traipsed into my home four times a week kept stressing his inability to point at objects in books or call me by name. What were they getting at? I’d wanted to know. What were they all looking for? Why did they keep saying I shouldn’t worry, that it was just a speech delay?

By then, though, I’d done enough Internet searches for “Signs of Autism” to know that my son had nearly all of them.

“I understand,” I said to the speech teacher that day on the phone, “because I’m seeing them, too.”

The actual diagnosis happened rather uneventfully in the basement of the office of a developmental pediatrician. The nurse practitioner tried to get him to do the things all the other therapists had been trying to do: to build a tower of blocks; to comb the dolly’s hair; to point at the duck and the sheep in the book; to answer the questions, “Can you show me the cat?” and “Zachariah, what’s this?”

My son spent much of the time at the window looking at the lawn mower outside. Periodically the nurse practitioner directed him back to the blocks and the doll, but inevitably he’d get up to check on the mower blaring outside.

“He’s worried,” I said. “He’s worried about the lawn mower. It’s very loud.”

I sat on an orange chair in the corner of the office and counted the minutes until the test was over. I wanted the noise outside to stop, for my son to do just one of the things he’d been asked to do, to get us out of that office where I could sit somewhere by myself for a very long time.

Finally the nurse practitioner wrote the letters, “PDD-NOS” — Pervasive Developmental Disorder Not Otherwise Specified, a disorder on the Autism spectrum — in block letters, touched my arm and said, “But mild, though. Mild.”

When I got home that day, I sat in the bathroom on the edge of the tub. My father had died a year and a half earlier after a seven-year battle with colon cancer, and I realized sitting on the edge of that tub how many times I’d sat there worrying about someone I loved: my father, my bereaved mother, my son. I remember I thought that day of writing e-mails to friends about that day at the office, about the testing, about what had been confirmed about my son — this was before the wildfire of texting — but I didn’t know what I’d say, or what they would say in return. What was there, after all, to say?

Eventually I told people that my son had been diagnosed, many of whom told me stories about other children who had needed extra help in school at one time or another or who had recovered from some type of developmental delay.

“Look at Einstein,” one friend said. “He didn’t talk at all until he was four or five.”

“Maybe he’s just tuning you out,” another friend said. “My kid does that all the time.”

Every mother I knew had a story of a child who had triumphed. Did I watch the kid on 48 Hours who had been on that special diet and who no longer had Autism, or had I seen the kid on Youtube who suddenly spoke full sentences at six-and-a-half after being utterly mute? And what about those non-verbal kids who couldn’t speak at all but could type those lines filled with striking images and turns of phrase?

“He’s only four,” they’d say, and I’d agree and try to feel reassured, as I knew they wanted me to, but what I really wanted to say, even to my own mother still in grief and feeling protective of her only grandson was, “I know you mean well, but you just don’t understand.”

Not long after the diagnosis, my husband and I attended a fundraiser at the developmental preschool where our son now received ABA therapy in addition to the speech and occupational therapy, and other therapies that are offered to children like my son. During the break from bidding on baskets of gift certificates to benefit the school, we drifted into the cafeteria where they were serving coffee and donuts and taking membership for the Special Ed PTA. At my typical daughter’s preschool — my kids are sixteen months apart — the moms often walked by each other in the hallways and gave each other those half-smiles at drop off but said little else, and to be fair, I hadn’t made much of an effort with those moms, either.

“Hi,” I said to the woman behind the table who stood over the paperwork. “I’m Laurie, and my son is four, and I just found out that he is on the spectrum…”

Before I could even finish the sentence, this woman I’d seen many mornings at drop off with two boys, one on each arm, a haphazard ponytail and bags under her eyes, reached across the table and took my hand.

“Don’t feel alone,” she said. “Listen to me. You don’t have to feel alone.”

I almost stopped her and said, “Oh, it’s okay. Really, I’m okay,” mentally going through the list of women I had in my life who had listened to me talk about my son. But instead I let her hold my hand. All this time of feeling so self-aware, I had never realized how deeply alone I had felt.

I don’t know what happened to that woman, as our sons ended up in different districts after aging out of the developmental preschool. I never did have the chance to thank her for her kindness that day. Now my son is nine years old and in a self-contained class, a small class made up of children like my son, children with cognitive and social delays that set them distinctly below grade level and unable to be fully integrated into typical classroom settings. He speaks constantly and has made great strides, reads and writes and is distinctly more interested in other children and in the world around him, though he struggles with change and with the kinds of social and cognitive issues that my friend with “typical” children don’t experience. With the advent of Facebook and other social media outlets, support groups, and the like, I have found a way to remind myself when I need to that there are other moms out there like me, other moms with nine-year-old boys who eat the sleeves of their sweatshirts, who can’t understand why babies don’t speak, who scream and cry when the bus has a substitute driver, or when it rains, or when something is moved in their bedrooms.

Sometimes at night when I lay my head on my pillow, there are worries that course through my head, worries about what life will be like for my son when he’s no longer nine, when it’s time for girlfriends and college and jobs. When those moments happen, I think about that woman at the preschool and wonder what her worries are, and I think about all the other mothers like me with children who struggle. I’ve had many other moments since then, with mothers on park benches, in dressing rooms, and in line for the ladies room. We recognize each other; it’s as if we know our own kind. My son may hold his hand over his ears at the sharp sound of the hand dryer, and another boy may flap his hands or walk on tiptoe. We may talk about a fear of haircuts or an endless need to open and close doors. On the days when there are meltdowns or when my son eats the wash cloth or lies down on the floor during homework time, I’ll go into the bathroom before I get into bed, sit on the tub, and think of these other women and the things we say to each other, those snippets of conversation, a phrase here or there, and know that somewhere, one of these women is saying, “My kid does that, too.”

Laurie Foos is the author of Ex Utero, Portrait of the Walrus By a Young Artist, Twinship, Bingo Under the Crucifix, Before Elvis There Was Nothing, The Giant Baby, and a new novel, The Blue Girl, published this July.

Photo: Getty Images

The Beauty of My Autistic Child

Posted on November 8, 2015 by CNF • Posted in Highlights, Slider Content • Tagged autism, Autistic, beauty, mother son, son • Leave a comment

By Alysia Abbott

Before I had children I didn’t think I would care very much about their looks, certainly not in any remarkable way. Doing so would reveal a gross degree of superficiality, a collusion with a society that already places too much emphasis on attractiveness. I believed that to cultivate the value of beauty in my little girl (my first born) would be to short-change her other virtues—the openness of her heart, the spark of her imagination, the steel determination to get what she wants when she wants it.

But something changed when I had my little boy. I know that every parent believes her child to be beautiful. Even the most unfortunate face is the face that only a mother could love. It’s clichéd. So please, take this statement with a grain of salt: My son, Finn, is beautiful.

With large green-speckled brown eyes and cupid-bow lips, soft wavy brown hair that manages to look good no matter how badly I cut it, with the velvety peach fuzz of his soft rounded shoulders, skin that is exquisitely, prohibitively soft, I cultivate, even fetishize his beauty. I praise his looks to his teachers and his babysitter all the time. I take picture after picture of him using every lens available in my iPhone arsenal, studying his face in different states of repose and concentration, sharing the best of these on social media.

I’ve embraced Finn’s beauty because it’s one of the few areas where he can truly thrive. He can’t catch a ball, or throw straight; he can’t draw a picture, or sing a song, say my name, or a write a word. I’m quite certain he’ll never be an academic or even a good conversationalist. If I walk him through the house, pulling him forward by the hand if I’m not carefully watching, he’ll knock his head against the door-jams like a pinball. A teacher once advised us to put him in a helmet. This undiagnosed visual processing disorder was just another complication in his already complicated diagnosis of autism and PDD-NOS (persistent development delay-no other symptom).

Without possessing the means or desire for the sort of communication that forms the basis of typical relationships, Finn may have to rely on his beauty to get the support he’ll need to thrive. I’m hoping his beauty will charm people, as it has charmed his caregivers and teachers. I want him to be protected from the bullies I imagine waiting in the shadows for this soft mute boy.

How do you form a meaningful relationship with a boy like my son? I can’t relate with Finn intellectually. I can’t ask him how he’s doing. I can only learn about his interests incidentally. Watching him interact with toys and books and nature, I can tell you that he likes best digging his hands in dirt, throwing rocks into ponds and street drains, playing musical toys with the speaker pressed tightly against his right ear. If I fall and cry out, he’ll as likely laugh, just as he laughs at any emotion expressed with great intensity, including alarm and anger. He’s not yet shown a facility for compassion or generosity. Yet we—his mother, his father and sister—are incredibly attached to him.

In Finn, I’ve had to learn other ways of relating, of attaching and loving. And with Finn, that’s a physical relationship. Without the understanding that’s achieved through language there is only Finn’s predilection for touch, his extreme sensitivity. The way he slips his narrow fingers between mine, or curls his warm body into the crook of my arm, or wraps himself around my neck like a long mink stole when I’m sitting on the couch. In our relationship touch is everything.

This is how all of us bond with Finn. We lay with him. We breathe him in. We kiss his face. But there have also been times when I’ve bit him. Anything to get a reaction. Anything that would wake him up to my presence. I am here. I am your mother. I’m not like any another. Recognize me.

When I used to come home from a day of work and tried to seek him out, he’d pay me no mind. Distracted, focused on getting his food, or playing with the iPad he would, in these instances, see me only as a distraction, an intrusion into his world. If I was too assertive with my interruption he might try to bite or pinch me. Hard. But it’s me. I wanted to say. I am your mother. You love and miss ME. Hello! But recently, Finn’s been waking up.

I’ve come home from a night and a day in NYC. I call out his name and when he enters my line of vision at the top of the stairs he jumps up like and down like a spring and flaps his arms with excitement. I greet him there, stooping so I can meet him at his level. He would rush over to my lap were it not for the therapist, who stops him. “Who do you want to see, Finn?” she asks. “You want mom?” She prompts him to sign mom: thumb on chin, palm open, fingers outstretched. He holds the sign and the therapist verbally confirms it’s intent. Mom.

He starts to move forward again and again he is stopped, “What do you want from mom?” She prompts him to fold his arms across his chest. “You want to hug mom?” He nods, holding the sign. “Ok, hug mom.” The therapist over enunciates each word, to make sure he understands their assigned meanings. Finn is hugging mom.

And at last he is released into my arms, free to join me for a quick embrace before being ushered back to the table to complete his work for the day. After the long build up, the hug is brief, too brief for me. So I scroll through all the other motions and signs I know he understands that will deliver me the proximity I long for after so many hours away. “Kiss,” I command and he moves his stiff lips to mine for a light peck then quickly pulls way. And I make a kiss sound: Mwah! One of the simple noises I know he can reciprocate. He makes the kiss sound. And I smile. It’s our special thing.

Then his therapist leads him to the table where he will work for the rest of the afternoon and he whimpers, starts to cry a heartbreaking cry. I want to say to the therapist, “It’s okay. He doesn’t need to work now right.” But I know I can’t get in the way. He didn’t used to be able to nod “yes” or “no,” let alone sign “mom” or “hug.” ABA, assisted behavioral analysis, is working for him. It’s how he learns best. Sign “mom” and you will see mom. Sign “drink” and you will have your drink. I’m a tool, a means for him to try harder to adapt to our typical ways of communication. And I’m glad to play the role.

Today, I feel more accepting of Finn. I appreciate his beauty but I also appreciate him as an individual, not despite his peculiarities but because of them. That Finn-ness that is uniquely his, even coupled with his maladaptive autistic behaviors—the biting, the pinching and the hitting, the chewing of rubber-bands, and breaking of beloved things—is still him. And that touch. Jeff likes to say that though developmentally delayed Finn’s abilities to cuddle are freakishly advanced. “He’s a cuddling genius,” he says.

Finn’s sensory disorder, the amount of pleasure he derives from being tickled or having a stiff bristled brush run over his legs and feet is truly awe-inspiring. His expressions of pure glee, a squealing with a face stretched to a toothy grin, accompanied by a sort of thick purr are brilliant, a thing of beauty.

How could we ever trade these qualities for the temperament of another boy? This is a boy made to love. And we four are bound together by this love. Seeing in him a potential that has only grown. This is where he’s been. This is where he’s going. This is who he was. This is who he’s becoming.

Author’s Note: Since writing this essay Finn’s home therapy has been interrupted and his behavior has taken a turn for the worse. These days his touch more often used to communicate frustration (pinching, kicking) than it is to communicate love. But this is part of motherhood too, to absorb and to listen, and to find balance between the mountains and the valleys.

Alysia Abbott is a writer and the author of Fairyland, A Memoir of My Father (W.W. Norton, 2013). Her work has appeared in Vogue, TheAtlantic.com, Slate, Real Simple, TriQuarterly, and Psychology Today, among other publications. She lives with her husband and their children in Cambridge, Massachusetts. You can find her on twitter at @AlysiaAbbott.

Perfect Label

Posted on September 10, 2015 by CNF • Posted in Blog • Tagged autism, children and childhood, labels, Mandy B. Fernandez, motherhood, parenting • Leave a comment

By Mandy B. Fernandez

She was crying, again, my daughter. Red-faced, scrunched up nose, piercing scream crying into my ear. Once Vivian began her fit, I knew it would be at least ten minutes before she’d stop. The noise from the gym could not overshadow my daughter’s tantrum. Other parents and children were now staring. Wailing and arms flinging, my two-year-old was not happy with my decision to move her to the side. She kicked and shouted her entire body spread across the bare floor, becoming even louder. I could not hold in my emotions anymore, my own disappointment for another failed mother-daughter outing. I sat down next to her and began to cry. Why can’t we go anywhere without this happening? Why can’t I comfort her or make her happy these days?

This kind of incident was happening about ten times a day, every day. I was exhausted. My two-year-old seemed exhausted too. I loved Vivian with my entire soul and being, sure. But I didn’t like her very much lately. Who was I kidding, I didn’t like myself much either.

A few weeks later was the play date I’d never forget, at the home of a mom I was just getting to know, with two other mothers and their kids. The other children seemed to play well together with the pretend kitchen, the puzzles and the games. My daughter, however, wasn’t interacting with them. She didn’t want the other kids near her, and she had trouble sharing toys. Vivian had several meltdowns as soon as we’d arrived.

The hostess of the group, a woman I had barely known, watched my daughter’s outbursts. Forty minutes into the visit she asked, “Has Vivian been tested for autism?”

I had several moments of panic… Autism? What? Because of a few outbursts from my child? I never responded to the question. The mom didn’t seem to care because she turned to the other guest and began a normal conversation with her, like what she had asked would have no lasting effect on me.

I looked at my girl—my beautiful, wild-curly haired daughter crying. There is nothing wrong you, with my child! This could not be true! Before I cried in front of the hostess and other mother, I gathered up our things and said we needed to leave for naptime.

With my daughter protesting, I struggled to buckle her into her car seat. And sobbed all the way home agonizing over that mom’s words. Could my child have a form of autism? No, that could not be. How dare she say that to me! She doesn’t even know my child! Then I let her question seep in, and a sense of intense worry followed. Is there something wrong with Vivian? So what if she doesn’t like loud noises or tags on her clothes? Or that she’s not crazy about certain textures of foods. She makes eye contact. She smiles. She hugs. She’s perfect, a little quirky, but still perfect.

I called Jen, a friend of mine, a teacher, someone I trusted, that I felt truly knew my child. I replayed the scene for her. Jen said I should not listen to those crazy words.

“Don’t be ridiculous! Vivian is just fine. She’s played with Sarah with no issues. Maybe Viv didn’t like those kids or perhaps she was just tired.”

I talked to my husband. He too agreed. That I had overreacted to this woman’s ignorance.

Still I made the appointment with our pediatrician to have Viv examined. If for nothing else, for peace of mind.

“I do not think your child has a form of autism. She is particular and perhaps a bit quirky about certain things but Vivian is within the normal behavioral range,” Dr. Wolff’s told us after performing a series of written, oral and physical exams.

He added, “She will probably outgrow her sensitivity to sounds, and textures, but if you want another opinion, have her tested by the county.”

So we had Vivian tested. My husband and I watched as she spent close hours “playing” and answering questions, forming sentences and following directions. The testing lady scribbled notes onto her clipboard.

Vivian didn’t protest, or ask for a snack or even inquire about the bathroom during the assessment. Instead she was just a kid trying to figure out what this grown up wanted and how she could have a little fun.

A week later, we received the official test results. The academic and behavioral exams came back “normal” within the standard range.

I glanced at the notice, then tossed it in the trash. I didn’t need a piece of paper telling me what I had already known, deep down. No one was going to mislabel my kid.

To this day, over three years later, Vivian still has “quirks” as the doctor put it. She can control her feelings and does not have tantrums anymore. But she still doesn’t like loud noises, especially cries from her sister. She still insists on removing the tags from her t-shirts and dresses.

She is my perfect little girl. This is how I choose to label her.

Mandy B. Fernandez is a freelance writer living in Pensacola, Florida with her husband and two children. She writes creatively and professionally on topics such as education, business, creative arts, health, family life, parenting and natural foods. You can learn more about her at www.writtenbymandy.com.

Photo: gettyimages.com

The Outsider

Posted on April 14, 2015 by CNF • Posted in Blog, Featured Blog Posts, General • Tagged autism, family, Lynn Adams, motherhood, parenting, sibling relationships, siblings • Leave a comment

By Lynn Adams

My children have shut me out of their closed relationship, and that’s a wonderful thing.

It began during a friend’s visit, in the playroom with my newborn daughter and two-year-old son. The friend had brought a blanket for Margot and a red pinwheel for James. James wasn’t able to blow yet, and I was concerned about it, and later I’d see it as an early sign of his Autism Spectrum Disorder. So he couldn’t work the pinwheel, even after we showed him. Dread was a familiar feeling by then.

My friend and I talked about my baby. Her delicate size, her tendency to sleep angelically all day and cry all evening, her mop of hair the same color as James’. I looked over at James just in time to see him inspecting the sharp end of the pinwheel’s stick. His gaze next moved to his baby sister’s fuzzy head, then back to the pinwheel. He reached out with the pinwheel and poked her lightly. Their eyes locked, but what passed between them surprised me: a combination of thrill and interest as if they’d each just opened a surprise birthday gift and found the other inside.

This is it, I thought: the beginning of the older brother menacing the younger sister. I’d known it was coming, as that’s what I’d experienced with my own brother, four years older. My brother, now a perfectly respectable father of two, had dipped my face into a creek like a chicken nugget into mustard sauce. He’d given me “noogies” well into his thirties. He’d lure me into his room, turn off the light and close the door, and murmur, “When you least expected it… expect it.”

That evening, when I announced bath time, James shouted, “You can’t hear! Baby cry!” He reversed his pronouns, “I” for “you” and “you” for “I,” another early sign of autism that stoked my dread. But he was also using his new sister as a smokescreen. Could they be working as a team? Could James even do that if he had autism?

There are as many ways of having autism as there are people who have it, and James did eventually receive the diagnosis. Since before Margot’s birth, he had been attending developmental therapies to address his delays, and appointments with specialists to rule out other problems. His main challenges during those early years were language development and big-time tantrums. We also had to work to connect with him socially, to bring him out of his own head and into the world around him. Through the appointments and the tantrums, though, Margot tagged along.

At one, Margot started each day by standing up in her crib and yelling, “Jay! Jay Jay!”

He’d hop in with her and they’d roughhouse for awhile.

One morning I heard James saying, “That’s right, Margot. Just pick up a leg and put it right there. Now pull with your arms. I’ll catch you, don’t be scared.” He was mimicking Ms. Sharon, his occupational therapist, almost word for word.

Bump! Margot hit the floor and they both exploded in giggles. From then on, Margot was out of her crib like a super ball every morning before 6:00, bouncing into James’ room.

The next year, James took Margot’s hand, led her into the bathroom, and closed the door. “Just a minute, Mommy,” he said over his shoulder. “I’m going to teach Margot how to use the potty.”

She was his little doll. Everything that was done to him, the instruction, the encouragement, he did to her.

Soon the shenanigans began. One would distract me with a lost toy or a spill, and the other would get into the forbidden fruit, whatever it was that day: my makeup, the toilet bowl, the cookie jar, the trashcan.

“I can’t bear it,” I said to my mother. “They’re the dynamic duo, working together to spread mayhem. How did you handle it when we were little?”

She paused, then said, “It was different with you two. Mostly your brother just menaced you and you tattled on him. Other than that, you didn’t interact all that much.”

Interaction. One of the main areas of impairment in autism, that’s what James and Margot did all day long. Starting with the curiosity of the pinwheel poke, moving through the brother-to-sister lessons on climbing out of the crib and using the potty, culminating now in the give-and-take of the hi-jinks, James and Margot already had a closer relationship than I’d had with my own brother. And neither of us had had autism. What was next? Empathy, that holy grail of social skills development?

Close relationships are not always harmonious ones. James and Margot do their share of fighting, physically and otherwise. They’ve left longlasting marks on one another’s bodies that other people have noticed. But no scars. I continue to complain to my mother about the fisticuffs, the potty words at the table, the madcap dashing around the house.

I’d worried that Margot would have to take care of James, that she’d visit him in the group home, her kitten heels clack-clacking on the linoleum. And that was because of James’ autism. Even before he was diagnosed, though, I worried I’d have to protect her from the menace of her older brother. Like many a worry, these were misplaced.

One day last year after school, Margot got out of the car, sat down cross-legged on the sidewalk, and refused to move. We’d parked a few houses down from ours, so James and I set off down the block, figuring she’d get up and follow. Instead, she began to scream, “Mommy! Don’t leave me here! Don’t leave me all alone! Mommy!”

The girl just needed to get up and walk into our house. But she wasn’t going to go quietly. This had all started when I told Margot she couldn’t have a stick of gum. Of course, that wasn’t the whole story. It had been a long day. But she wasn’t the one with autism. Why couldn’t she just do as she was told?

How did I handle it? I didn’t. Because before I could get over my internal argument about comforting my distressed child versus giving in to a brat, James came to Margot’s rescue. He walked back down the block, hoisted her up, and carried her home, her little legs flapping against his shins. She rested her cheek on his shoulder and closed her eyes. He put her down on the front steps and kissed her.

“Thanks, James,” I said.

He kissed her again, not even seeming to hear me.

Lynn Adams lives in New Orleans with her husband and two children. Her work has appeared in Brain, Child, Salon, among other publications. She is a co-author of Autism: Understanding the Disorder and Understanding Asperger Syndrome and High Functioning Autism. Read more from Lynn on her website.

Top Ten Books for Parenting Children With Disabilities

Posted on January 29, 2015 by CNF • Posted in Book Reviews, Top Ten Lists • Tagged ADD, ADHD, autism, awareness, booklist, children with disabilities, disabilities, learning disabilities, memoir, parenting advice, special needs, top ten books • Leave a comment

These ten books all make two similar points: 1) Your child is more than a syndrome or symptoms or disability, and 2) Navigating the bureaucracy associated with having a child with a disability is challenging. In their own ways, these memoirs and advice books provide advice and comfort not just to parents whose children share a similar issue, but to all. Lessons about self-reliance and acceptance are important for all kids.

These books were published in this century, which makes sense given that we know so much more about how young brains and bodies develop than we ever have before. All of them also talk about similar acronyms like IDEA, IEE, and 504. While some of the books focus on just one special need (like autism or learning disabilities or genetic conditions or Down’s syndrome), together they look to the future in some way, helping children to develop into adulthood—when they will become adults with disabilities, a specific population two books on the list focus upon.

Be sure to consult the books for lists of resources and suggestions for further reading, and don’t let some of the scientific journal articles listed scare you off. Remember you know your child better than anyone else. Educate yourself and trust your gut.

Parenting Children with Health Issues and Special Needs by Foster Cline and Lisa Greene

This condensed version of 2007’s Parenting Children with Health Issues is a useful volume that focuses on the emotional development of ill children. While originally written for kids who have chronic medical conditions (like diabetes or cystic fibrosis), the 2009 version also includes advice for those with autism, learning disabilities, and other similar conditions. More importantly, it has advice for all parents—like nurturing self-concept and being a consultant parent rather than a drill sergeant or helicopter. The main take-away is that children need to learn to take responsibility for their own bodies and adhere to medical advice. This can happen by 4th or 5th grades, but certainly needs to happen by high school. Parents can let children choose when to do treatments, but not if; banking lots of smaller choices means parents can sometimes cash in bigger requests or respond with, “I love you too much to argue.”

A Good and Perfect Gift: Faith, Expectation, and a Little Girl Named Penny by Amy Julia Becker

I dare you to read this book and not tear up several times at the rawness of Becker’s emotion in describing her relationship with her first-born, Penny. The Beckers faced an unusual situation in this day of prenatal testing: they were surprised when their daughter was born with Down’s syndrome. A Good and Perfect Gift chronicles how Amy Julia and her husband, along with their families, friends, and students, come to understand Penny and what she adds to their communities. Published by a Christian Press there is quite a lot of religiously-motivated discussion, but for those unfamiliar with this point of view it won’t distract from the larger messages of the book. Becker finds that Penny having Down’s syndrome was hardest to deal with in the abstract, but once they were in a room together she became nothing more than their wonderful daughter who happens to have an extra chromosome. The lessons about pity versus compassion will help all of us who know someone with a special needs child.

The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son by Ian Brown

The Boy in the Moon is Canadian journalist Ian Brown’s lyrical memoir about his son, Walker. Walker suffers from a rare orphan genetic syndrome (meaning it comes out of nowhere), labelled Cardiofaciocutaneous (CFC). Given the small numbers who have it not much research is devoted to studying CFC, and as Brown soon learns he often knows more about it than the pediatricians he sees (as do the other parents with CFC children he meets and stays connected with via the Internet). This is partly because, as Brown describes, “High-tech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level.” Yet, parents will see themselves in the constant fights Brown and his wife have over who is getting more sleep (though their fight goes on for 11 years). Brown’s story reminds us that we all need to be advocates for our children to help them develop the best inner and outer lives possible.

Will My Kid Grow Out Of It? A Child Psychologist’s Guide to Understanding Worrisome Behavior by Bonny J. Forrest

Dr. Forrest’s practical guide will appeal to parents who are worried their children may be depressed, autistic, ADHD, schizophrenic, or have an eating or learning disorder. While she is clear that Will My Kid Grow Out Of It? is not meant to be a substitute for professional advice, her advice is plentiful. She believes there is no downside to screening a child because a parent will either get reassurance or get early access to the resources a child needs. Forrest reminds us that, “Although one in seven children has some form of developmental disability, fewer than half the pediatricians in the country screen children for these disorders.” On top of that there are few gold standard research studies in child psychology and lots of “cures” in the popular media; she discusses these and suggests questions parents should ask when choosing professional to help children. Note this book offers a useful bibliography divided into sections like scientific journal articles, books, and websites.

Thinking Differently: An Inspiring Guide for Parents of Children with Learning Disabilities by David Flink

Like Dr. Forrest, Flink pushes testing and assessment for children because it helps families and schools build profiles that can lead to useful interventions. Flink focuses on “learning disabilities,” which are, “Generally understood to be an umbrella term for neurological difficulties in the brain’s ability to receive, process, store, express, and respond to information.” Flink himself has been diagnosed with a learning disability, dyslexia, and ADHD, and he is an expert in navigating how to use the educational system to get help. On top of that, he started a mentoring program called Eye to Eye, that links college students with LDs to middle schoolers. Flink’s own story of attending an Ivy League college, and authorship of this book, should help reassure parents that a label doesn’t define a child. His Chapter 3, “Take Action,” is especially helpful in explaining to parents the laws and evaluations that can help children access help (his discussion about whether to hire an independent evaluator or use the one the school provides is important).

Essential First Steps for Parents of Children with Autism: Helping the Littlest Learners by Lara Delmoline and Sandra L. Harris

This short book by two professors who run the Douglass Developmental Disabilities Center at Rutgers University is packed full of useful information. Each chapter starts with the story of a specific family who has a child with an autism spectrum disorder and ends with a list of further reading and resources related to that chapter whether it be on self-help skills or play. Delmoline and Harris write that 20-30 years ago it would have been unlikely to get a diagnosis for a child under three, and usually not until five or six. But with powerful interventions, like Applied Behavior Analysis, younger children can benefit greatly. The authors emphasize though that any intervention needs to be done by a trained professional who should know just as much about what treatments haven’t worked as those that have. A focus on your individual child and data on him or her is also vital to seeing changes in child’s performance and behavior—so parents, start taking notes!

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz

Sensory processing disorder is seen as a new definition of an old problem. Until recently it was often overlooked, except by occupational therapists who are most effective in helping children with a range of sensory processing issues. Like other authors on this list, Kranowitz is a strong advocate for early intervention—even recognizing that insurance doesn’t always cover the cost of therapy, mainly because the disorder still isn’t included in the latest DSM. Regardless of whether your child has sensory issues, or other medical needs, you should read the section in Chapter 8 on how to build a relationship between a therapist and child (hint: emphasize that it’s fun). Kranowitz presents many checklists and questionnaires throughout the comprehensive book, but her images are also useful, like saying we should think of sensory processing disorder like indigestion of the brain and just like an antacid soothes, kids need occupational therapy to smooth their neural pathways.

The Complete Guide to Creating a Special Needs Life Plan: A Comprehensive Approach Integrating Life, Resource, Financial, and Legal Planning to Ensure a Brighter Future for a Person with a Disability by Hal Wright

Eventually many children with special needs develop into adults with special needs. Hal Wright is a Certified Financial Planner who has a daughter with Down’s syndrome. This book deals with various forms of planning, but the sections on financial and legal planning are especially useful. Wright talks about siblings and how parents need to be fair to help all children financially, while also knowing siblings often take on other burdens related to special needs siblings. He cautions that just as state disability services “are more extensive for people with developmental disabilities than for those with mental illness or physical disabilities. There is also a greater emphasis on the needs of pre-school and school-age children than for adults.” It is up to parents to plan ahead and deal with the practical intricacies as children become adults and this book acts as a sueful guide.

Parenting an Adult with Disabilities or Special Needs: Everything You Need to Know to Plan for and Protect Your Child’s Future by Peggy Lou Morgan

If Wright’s book focuses on the practicalities of having an adult child with special needs, Morgan’s book focuses on the actual caring issues. She writes, “All parents deal with the sometimes-paralyzing question of what happens to adult children when we can no longer be there for them. While legal documents are very important, they may not prepare caregivers, nominated representatives, or others to understand someone who may not be able to communicate his needs directly.” For Morgan the title of Chapter 3 says a lot, “Loneliness is the Only Real Disability.” She explains that even service dogs can be helpful, though many residential homes don’t allow them. Nonetheless creating social connections important for special needs kids/adults—especially if parents are not able to be around much, if at all. The sample caregiver’s manual in the appendices is important for anyone working on this daunting task.

Touchpoints Birth to Three: You Child’s Emotional and Behavioral Development by T. Berry Brazelton and Joshua Sparrow

You might be surprised to find a book on this list that focuses on “typical” developmental milestones. But many parents of special needs kids express, as Becker does in A Good and Perfect Gift, that it can be helpful in a way to see in what ways a child is attaining milestones at around the right time (could be verbal if physical is a problem, or vice versa). Touchpoints recognizes not only development forward, but also regression at certain times. While “touchpoints” are universal, “driven by predictable sequences of early brain development,” they obviously don’t always apply to all. Part 2 discusses various challenges to development in alphabetical order, including allergies and asthma, developmental delays hypersensitivity, and speech, language, and hearing problems. So some special needs parents may learn a bit, but they will also benefit from discussion of other issues like divorce, television, etc. In the end, a book like this reminds us that each child is an individual and not just a symptom, disorder, or disease.

Hilary Levey Friedman is the Book Review Editor at Brain, Child and the author of Playing to Win: Raising Children in a Competitive Culture

Shorts Story

Posted on July 14, 2014 by CNF • Posted in Articles Page, Highlights • Tagged autism, childhood, children, mother, mother and son, mothering, spoecial needs, summemr camp, summer, YMCA • 1 Comment

By Tyann Sheldon Rouw

Early Thursday morning, I awoke to a shadowy figure leaning over my bed, wielding a big pair of black scissors. They weren’t scissors one used to cut paper. No, they were the scissors someone reaches for to finish a heavy-duty job, like cutting wire or a chicken carcass. In one hand, my 12-year-old son Isaac held the scissors, the sharp ends pointed down towards me. In the other, he dangled a pair of shorts. My eyes struggled to focus while I gave him instructions.

“Let me cut the tag off for you,” I said. For most people, the first task of the day might be turning off an alarm clock or walking into the bathroom to pee. For me, it’s occasionally cutting a tag out of clothing for Isaac, who has autism. It’s not the first time it’s happened, and it won’t be the last. Tags irritate him. Literally. Tags must feel like sandpaper when they rub against his skin.

Still in a daze, I told Isaac it was too cold to wear shorts and watched him set the shorts on the couch in the living room. In typical fashion, he didn’t respond. Isaac struggles to verbalize his thoughts. After he was on the bus, I put the shorts back in his dresser.

A few weeks before, a friend had asked me if we would like some clothes her son had outgrown. I was grateful to be the recipient of such generosity, but when she asked what size my boys wore, I was lost.

All of the tags have been cut out.

After rummaging around in Isaac’s drawers, I found a couple of pairs of pants I’d bought at Target labeled size large. That would have to do.

It felt like Christmas when my friend dropped off two bags of clothes. Isaac was particularly happy when he saw the shorts and tried them on right away. He was pleased they fit. The new shorts were long athletic ones with the Nike swoosh, much more casual than anything Isaac owned. The way he strutted around the living room with his faint smile said it all. He had hit the jackpot.

Every Thursday afternoon, Isaac has respite time at the YMCA. He goes with a caregiver, Lacey, giving the rest of our family some much-needed down time. He never deviates from the routine. Never.

Isaac qualifies for respite services based on the severity of his disability. My sweet blond-haired, blue-eyed boy has gained a bit of functional language in the past few years, but it’s not always intelligible to new conversation partners. He suffers from anxiety. He is obsessed with opening doors, turning on water and controlling meal time at our house, such as who is eating when. He loves elevators and swimming pools. He is particular about listening to a certain song in the van as we turn onto a street near our home. He cleans dishes and watches his favorite TV show every night before bed.

For the past few months, Isaac has been “hanging out” at the YMCA during respite time — eating a snack, watching people and opening doors. He used to shoot baskets, hit the racquetball around, play foosball or walk the track, but lately he hasn’t done anything at all. I tried not to make a big deal out of it. As long as he was happy and didn’t cause problems for anyone or himself, let him be, I said.

Later that day when Isaac returned home, I asked Lacey how things had gone.

“It went well,” she said, as she came inside. “Did you know he brought his shorts?”

“No, we were in a hurry and I didn’t see what he packed,” I told her.

“Well, he changed into shorts, and then he went into the gym and played basketball with a group of guys,” she said.

“You played basketball, Isaac?” I asked, surprised.

Isaac didn’t respond.

“I love it when people are nice and let him play with them,” she said.

“Me, too,” I answered. I bit the inside of my lip when I felt the tears well up in my eyes.

I looked at Isaac, who was grinning from ear to ear as he took a bite of a fig bar.

Isaac doesn’t really play basketball. He’s a great shot, but dribbling up and down the court is not his idea of a good time. If someone passes the ball to him, he might not pass it to anyone else. He might take a shot or leave the game altogether and take the ball with him. He may just laugh hysterically as other players pass, dribble, rebound and score. When he’s interested in the game, however, he wants to be part of the group.

It occurred to me that perhaps he dug out those scissors and woke me up this morning because he wanted to play with the other guys. I bet he thought if he looked more like them – everyone wears these long athletic shorts – he could more easily join the group. Could it be?

I imagine a group of junior high or high school students looking his way and allowing him to join. I imagine him shrieking with delight when someone shot the ball and it was nothing but net. If the students are there playing most Thursdays, they have seen Isaac around. I’m sure Isaac had noticed them. If they’ve ever seen him shoot, they’ve likely witnessed him sinking three-pointers, even when he shoots underhanded, granny style. Although he’s not running the offense or making an assist to someone who can score, Isaac loves to play. He just does it his own way. It makes me smile. He has a lot to offer the world. People just need to take time to know him – and to include him.

I am reminded of a passage from The Reason I Jump by Naoki Higashida, who is severely affected by autism and communicates through typing. The introduction states, “Naoki Higashida reiterates repeatedly that . . . he values the company of other people very much. But because communication is so fraught with problems, a person with autism tends to end up alone in a corner, where people then see him or her and think, Aha, classic sign of autism, that. The conclusion is that both emotional poverty and an aversion to company are not symptoms of autism but consequences of autism.”

Hmmm, so someone with autism might be excluded because of his communication challenges? Could it be that these people want to be included and don’t know how to get involved?

Isaac likes people when they understand how to interact with him. He rarely leaves his brothers alone. He is glued to my elbow most of the time. He sticks close to his dad. When his brothers are playing and interacting with him, he radiates pure joy.

Like everyone, he likes to be left alone at times. Who doesn’t? There are times when he doesn’t want to be involved, but at least we extend the invitation. Sometimes his anxiety about a situation doesn’t allow him to participate. We ask anyway.

Can he communicate his wants and needs to people he doesn’t know very well? Not usually. There have been many times he’s been at the YMCA, watching people play ball. Perhaps he has wanted to join them every time? Sometimes fetching a stray ball and refusing to toss it back to a player might be his way of saying, “I’ve got your attention now. Let me play, too.”

I was reminded of a flag football game a few years back in which Isaac’s twin brother Noah played. (Noah has autism, too.) As we were loading up the van to head to the football field, Isaac came outside wearing Noah’s football uniform from the prior year. While the game was underway, Isaac ran across the field and stood on the sidelines, happy to be there. He stood shoulder to shoulder with his brother and Noah’s teammates. I’m not sure Isaac wanted to play football, but that day he was dressed for the part. He was wearing the right clothes so he could belong, too. He was – at that moment – one of them. When he dressed like a football player and wore the basketball shorts, those actions communicated more than his voice ever could. He wanted to be included.

As I watched Isaac interact with his brothers in our living room, my thoughts drifted to the events at the YMCA. I am grateful to the guys at the YMCA who included Isaac, who decided they were not going to play a basketball game that was too competitive, so they could include the kid who was wearing the bright orange shirt and the new-to-him athletic shorts.

I hope they understood what an impact their kindness had on my son — and how happy we both felt when we realized he could belong, just like anyone else.

I need to grab those giant kitchen scissors and dig through Isaac’s dresser to find the other few pairs of shorts we were given. I have the feeling he will be wearing them again at the YMCA. I need to cut out the tags.

Tyann Sheldon Rouw lives in Iowa with her husband and three sons. Her work has appeared in various newspapers, and she is a contributor to the Chicken Soup for the Soul series. She is an autism advocate and blogs regularly at http://tyannsheldonrouw.weebly.com. Follow her at @TyannRouw.

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We Count to Three

Posted on July 11, 2014 by CNF • Posted in Blog, General • Tagged autism, children and childhood, family, Kim Farrar, motherhood, parenthood, poetry • 1 Comment

By Kim Farrar

My daughter has been crowing like a rooster

for thirteen years, and then asking, What does a rooster say?

Some days her charms are irresistible

And I cock-a-doodle-do in response, like a mate

lost in a cornfield. This is wrong

according to Overcoming Autism.

I should redirect the conversation

to something in front of us,

make her touch the carpet and say soft.

When she was born, her father

held her up and her mouth made a perfect

O, as if we had some nerve

plucking her from that dark warmth

into fluorescent light. She scored

well on the Apgar, and without knowing

I rejoiced in her future

all she would learn, every cloud

I could show her, who she might become.

In the park there was a stone frog

that spouted a great arc of water,

but rather than flit and dart

with the other little girls who giggled

in their ruffled bottoms, she’d squat

by the drain and listen

to the dripping echo in the deep

metallic well. Today she’s a good swimmer

and at the public pool she blends

until an honest boy asks, What’s wrong with her?

I explain as best I can then he disappears

among the swarms of screaming children.

We count to three and go under.

Kim Farrar is a poet and essayist living in Astoria, New York. Her poetry has been published most recently in Alaska Quarterly Review, Chicago Quarterly Review, and Rhino. Her chapbook “The Familiar” was published by Finishing Line Press in 2011.

Photo by Scott Boruchov

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Burned

Posted on June 16, 2014 by CNF • Posted in Highlights, Slider Content • Tagged African-American women, autism, children and childhood, Doreen Oliver, emotions, family, SAHM • 5 Comments

By Doreen Oliver

The first time I threw myself a birthday party, my hair caught on fire. I was chatting with a friend in a West Village lounge, unaware burning candles hung centimeters away. With a slight tilt of my head to sip my lemon drop martini, my hair lit up like four out of the five rings at the Sochi Olympics.

I’d never been one to throw myself a party. It had always seemed a bit self-indulgent, celebrating yourself when all you did the day you were born was lie there, bawling. But I had felt isolated in the months leading up to that fateful day, and wanted to be fÃªted. For nearly two years, while my husband went off each day to collaborate with colleagues and clients, I stayed home with my lone co-worker: our first-born son, Xavier. I had abandoned my career as a film producer when he was born, and now he and I were new hires in the roles of mother and child, with neither of us doing a very good job. He had high marks when it came to walking and feeding himself, but wasn’t cutting it in the talking department. If I were a better supervisor—scheduling more play dates, labeling aloud each piece of produce in the supermarket, not stashing him in the Aquarium swing during my morning coffee break with The View—I would have been able to help him speak. Instead, Xavier and I were alone together in our Brooklyn apartment, punching the clock. And he hadn’t uttered two words consistently.

I scheduled another developmental review with New York City’s Early Intervention agency. A few months before they had denied my son free speech therapy services, saying his language was “age appropriate,” but I knew he needed help. This time, my case manager prepped me for the upcoming review,advising me to push for at least two speech therapy services each week. “You might only get one,” she said, “but at least that’s more than none.”

At the meeting, after probing deeper into how below average our pride and joy was, the agency awarded my son three speech therapy sessions per week and two family training sessions per month. They also recommended he undergo a psychological evaluation.

I closed my eyes and finally allowed myself to exhale. A moment later, my eyes flew open.

Wow, I thought. My son must be really messed up.

* * *

Still, my birthday party had to go on, now more than ever! I needed—no, deserved—to celebrate something. After clothing and party accommodations were squared away, I focused on my hair.

Hair had always been where I’d stumbled. During college, the time when many African-American women declare their allegiance to either permed hair or their natural kinks, I vowed never to chemically straighten my hair again. For someone who never liked to think about her mane but refused to cut it off, this decision left me to fight with my thick, coarse mass on a daily basis. It brought me great anxiety, and to make life easier I often covered up my God-given locks with braided extensions or the occasional wig.

Determined to display my natural beauty for my birthday, I indulged in a trip to one of the best natural hair care salons in New York. The stylist massaged my scalp with elements like eucalyptus and lavender; she coaxed my curls into lush, even, shiny waves. I glowed.

At the party, surrounded by only adults, I caught up with friends who did things other than cut up their child’s chicken nuggets. Alison quit her job to ski in Crested Butte. Lorelei started a non-profit in Brazil. Athena, my cousin’s friend, focused on me.

“Your son is so cute!” she said. “The picture you sent of him in the bathtub is adorable!”

“Thanks.” During Xavier’s first year I’d email pictures every week—him at the playground, eating cake, sleeping. Recently I had taken fewer. Only my husband and I knew how hard it was to get him to look at the camera and smile.

“Do you have any new pictures?”

I nibbled the sugar on the rim of my glass. “I’m so used to toting him around I didn’t even think to bring pictures.”

“Where is he now?” she pressed.

“Huh?” I said, thinking of ways to change the subject.

“Where is your son now?” she shouted over the music. “Who is he with?”

“Oh no!” I seized the opportunity to create a diversion and called over to my husband with mock alarm. “Honey! What did we do with Xavier? I thought you had him!”

My husband and Athena looked at me, baffled. I, however, laughed hysterically. I had traded my discomfort for amusement, and I leaned back away from Athena and her questions to take a long, satisfied swallow of my drink.

And then I was aflame.

It was quick and without warning—the low-hanging chandelier caught a strand of my eucalyptus-treated hair and ignited it as if it were the actual leaf. Athena, a parole officer trained in emergency situations, swatted at the middle of my head, extinguishing everything but the smell of burnt hair. A patch in the middle of my head was seared almost to the scalp, and my formerly beautiful tresses now resembled an overgrown lawn, mowed only in the very center.

Within a month after that party, the psychologist diagnosed Xavier with autism, my husband was laid off, and my 35-year-old sister had a stroke. I had tried to runaway from my worries about my son, to focus on myself instead of the nagging guilt that I was failing my child. Instead, I got burned.

* * *

That was six years ago. My husband found a new job, my sister recovered, but sometimes I still wish to run away from motherhood. Xavier was diagnosed early, but at eight years old he still can’t hold a proper conversation. Maybe I’m the problem. My love for him is great, but also heavy, laden with worry and regret. Perhaps it drags him down, stunting his development. Maybe if I left, we’d both be relieved. I imagine stepping out of the kitchen while the kids eat their gluten-free ground turkey and kale wraps, slipping out the back door, then tearing down our tree-lined street.

My fantasy stops there, though, because I have no idea where I would go. I can visualize the escape, but can never picture the destination. That’s the difference between a fantasy and a dream; a vision borne of sadness rather than joy.

I dream Xavier will be a musician. Recently he recorded himself on playing “Let it Be” on the keyboard. He had taught himself to play the chords by ear in the original key. I don’t know if he’ll ever speak like you or me, but I believe his passion for music will be the path to his success—however we define it. When I think about his talent, the accomplishments he’s made in his own time, my love for him is light, buoyant, and joyful.

It is this type of love that cements me in place when self-doubt shouts for me to run. I can see my son’s future, and therefore I must stay. I have to be his voice, his advocate. I have to be his mother.

The patch of hair has grown back since, but recently, after an exhausting few weeks of Xavier waking up in the middle of the night and squealing for up to two hours, I cut off all my hair. It was uneven, the ends were frayed and split, and it was too much to manage. I hated the way it looked and was overwhelmed by the care it needed that I felt I couldn’t give. So I took the kitchen shears, stood over my bathroom sink and cut it, lock by lock. I ran my fingers through the short, healthy roots. They were strong and sturdy, and stood firmly in place.

Doreen Oliver is a writer, performer and producer and mother of two boys. Her work has appeared in the New York Times, Washington Post Sunday Magazine and the 2014 Listen to Your Mother storytelling showcase at Symphony Space in New York City. Follow her at @doreenoliver.

Normal

Posted on June 10, 2014 by CNF • Posted in Articles Page, From The Archives, General • Tagged autism, children's disabilities, disability, education, hippotherapy, horses, Marie Myung-Ok Lee, special needs, spinal cord tumor, stables • Leave a comment

By Marie Myung-Ok Lee

On Saturdays I drive to another state to take J, my three-year-old, post-cancer, autistic son, to the Happy Trails Stables, a facility for hippotherapy for mentally and physically disabled children.

I found out about Happy Trails back in another life—before I had J. As a child, I’d made a promise to myself that I would always try to do some kind of volunteer work. When a friend with a child who has cerebral palsy mentioned the stable, I thought, Aha! The perfect volunteer job. I had shown quarter horses as a child, and my skills could help severely disabled children. Noble and yet secretly indulgent of my addiction to the smell of horse manure.

The idea simmered on the back burner for years, but I never got around to actually calling Happy Trails. Miscarriages, pregnancy, an on-again-off-again writing career, my father’s suicide, and a few other things got in the way—and now my son is one of those riding children whom I once envisioned with a mixture of pity and compassion. And I’m no brave horse-wrangler—I’m just a mom, planting my boot on the side rails, watching the parade of children go by.

Happy Trails is the Platonic ideal of a stable. You enter it via a winding drive that passes woods and rolling sedge fields. There is a barn, an arena, and an outdoor riding ring surrounded by a weathered whitewashed fence—it can’t get any more quaint. Happy Trails even has its own art gallery displaying oil-painted renditions of its bucolic splendor.

What is different from your average stable is a long wooden ramp leading up to what looks like a stage set up in the arena, so that children of varying abilities can mount their horses. Wheelchairs can be pushed up the ramp. The tack room has a neat row of bridles with the horses’ names—Kimmie, Paint, Thor, Gus—but also a row of pediatric helmets hanging next to thick web belts with handles, as well as an assortment of textured rubber balls and other tools used for physical therapy. On a table sits an issue of Equine magazine next to a splayed catalogue of “mobility tools” for the differently abled: foam blocks, chew-toys, full-body wheelchairs, and an assortment of braces—unsettling in their scope and variety—to buttress hypotonic (low muscle) children into a semblance of sitting or standing upright.

When J and I arrive, I put J’s helmet and belt on him. Part of J’s disability involves his extreme dislike of doing anything anyone wants him to do, and so the next phase involves me and his therapist dragging forty pounds of kicking, biting, and screaming J up the ramp and onto the back of his horse, Kimmie, who amazingly ignores the commotion.

The smallest children, like three-year-old J, do not use saddles but instead hang on to a metal steering wheel attached to what looks like a giant canvas luggage strap circling the horse’s middle. The children wear web belts around their middles so that the “side walkers”—an adult volunteer and the therapist—can hold the kid on the horse, while a third volunteer holds the horse’s lead.

Kimmie is a placid gelding the gray-white color of old underwear. In all my years of being a serious rider, I have never seen such unbeautiful horses as I have here. Swaybacked, knock-kneed, strange mixtures of breeds, like the stumpy pony who looks unmistakably part draft horse. These mounts have no wild oats to sow; they are all at least fifteen years old. Gus, the one who is so sway-backed that he looks like some kind of camel, is purportedly fifty years old, which would translate to about 130 years in human age.

They come to Happy Trails in a variety of ways: Most are donated or plucked from the dog food factory line to retire to a nice life of working a few hours a day and then spending the rest lazing in pasture. The horses must have an even, plodding gait and unflappable personalities. As a test, a trainer gets on their backs, screams, flails, falls off—does everything short of shooting a gun. The horses that remain unmoved are accepted.

I think J secretly loves riding, but he is big on what the therapists call “counter-control.” For example, during his Skinner-based therapy, when we reward him with edible treats, he often hands the treats back—after spitting on them—to show us he can’t be bought.

So no matter how much he really enjoys riding, the fact that we are making him do it has to be acknowledged first. As he tantrums up the ramp, J tries to pull off his helmet, kicks at me and the therapist, and reaches over and yanks the patient Kimmie’s mane. (Horses actually have no nerve endings in their hair’s roots, but J doesn’t need to know this). What the therapists have learned to do is to toss J on like a sack of potatoes and start running off the minute J’s little butt hits Kimmie’s back. J has no recourse but to hang on for dear life.

Kimmie trots off. J screams with rage, tiny hands clinging to the steering wheel. But there is a flash of happiness in his eyes. A moving roller coaster! He loves it, truly.

In the lingo of therapists, riding a horse challenges balance, bilateral movement, and cross-midline skills (e.g., moving your right arm to the left, which requires a surprisingly complex brain action), skills that the able-bodied take for granted. For children who have never walked unassisted, being atop a moving horse actually allows them to experience the rocking pelvis sensation of human walking.

J has motor delays, likely stemming from the trauma of his spinal cord cancer, and could use some of that cross-midlining. The therapists also assure us that hippotherapy will help him with his relationship skills, since many autistic children end up bonding with their mounts. And it has the further benefit of being fiscally therapeutic for Mommy and Daddy: we spend more than twenty thousand dollars a year out of pocket on his various therapies, but our state Medicaid, though collapsing under the weight of drastic budget cuts, shells out the ten dollars a week for this.

During our first sessions, I was so consumed with getting J successfully atop his horse, and then bursting with pride to see my little guy bouncing atop Kimmie—what a good seat! just like his mommy!—that I was oblivious to my surroundings, the other children, the other parents. But then the therapists started taking J for little trail rides around the farm, leaving me behind with nothing to do but watch the other kids going ’round and ’round the indoor ring.

My initial impression was that the whole enterprise was a Flannery O’Connor story accompanied by Diane Arbus photos. The bucolic setting, the misfit horses, the impossibly deformed and damaged children. Some kids, like J, scream. Others jibber-jabber. There is also a silent rider, who is microcephalic, adult in size but still able to wear those tiny pediatric helmets.

There’s the family whose daughter (seven? nine? twelve?) is in a full-body wheelchair, her limbs the texture of overcooked spaghetti. I always admire the aplomb with which the father or mother—they seemed to switch off—manages to get their daughter ensconced in the wheelchair, grab their Dunkin’ Donuts coffee out of the van’s cupholder, and wheel to the tack room. One day I saw that the mother had added a baby on her hip to the whole load, and I thought, Wow, that’s nice, at least they have a healthy daughter. Then when I came closer, I saw that the baby had floppy limbs encased in plastic braces, much like her sister’s.

There is also a father and son who have the session right after J’s, so as we finish up, we often see them unloading. The boy, about twelve and quite large, has some kind of mobility problem, but he doesn’t use a wheel-chair: His father hugs him around the armpits from behind and the two of them “walk.” They do this every week, stubbornly, lovingly, insistently. I can’t help wondering what will happen as the boy grows larger—he’s bordering on the obese—and the father weaker. This center will not hold.

Unlike my friends, who spent their pregnancies cupping their hands on their bellies and smiling knowingly, I was tormented during my pregnancy by visions of deformity. The very opacity of my skin over my womb only added to my anxiety. Anything could be growing in there, I thought.

As a child, my physician father tried to get me interested in medicine by bringing home medical texts from the office. I became fascinated with one, Gross Malformations of the Human Anatomy. I could spend hours poring over the pages, cataloging the endless ways things could go haywire in the process of a sixteen-celled blastocyst actually growing, dividing into muscles, bones, organs, skin.

Being at Happy Trails was not unlike seeing the strange wanderings of my mind somehow realized in front of my face. The visual trauma was different than being in the oncology ward, where every child has a chemo stent in his neck, or at J’s autism school, where every kid is staring off into space and making bizarre noises. Here on display is the full wild range of disability and damage: brain injury, malformed limbs, genetic deformities.

One day I spotted an older rider—she had some wrinkles along with obvious mental retardation—and I wondered what she was doing at Happy Trails. Then I saw a much older, much wrinklier couple—her parents—and realized that yes, she is someone’s child, and yes, as these children grow, their deformities will grow along with them. I can’t help being curious now when I see someone new at Happy Trails—what are these riders’ disabilities, and are they physical, mental, or both?

It didn’t take long to find out. Some of the parents look bored out of their skulls and seemed happy to converse with a scruffy Korean-American woman who looks twelve years old. (I am often mistaken for J’s babysitter.) They talked strangely freely of their children’s disabilities and confirmed my suspicions that many of the physically handicapped children have mental problems as well. And here I thought we were such singular victims of bad luck, a child with cancer and autism.

I hesitated over revealing too much in return. There’s a part of me that wants the world to know how much J has suffered—spinal cord tumor at eighteen months, endless painful surgeries, full-body casts and wheelchairs, and now the pain of autism—so the world will be “nice” to him. But at the same time I have a fierce faith that he will recover, and so I don’t want him to be burdened with the history of being the cancer kid, the autistic.

When the parents spoke of their children’s disabilities, I was happy to listen. But when confronted directly with their offspring and their shocking deformities, I had to consciously force myself to act “normal”—i.e., making eye contact but not staring too little or too much, because I know too well how I feel when this is done to us.

But after a few weeks of putting on this careful act, a strange thing happens: I find something in my brain softening and shifting and I start seeing so-and-so’s kid only as so-and-so’s kid. Not to sound too Jerry Lewis, but I start seeing the child and not the disability.

It is the brain’s instinct to normalize, basically. Good and bad things alike. My husband said that his high after being granted tenure at a great university lasted exactly three hours, and then it wasn’t exciting anymore.

After hanging around Happy Trails long enough, the families become familiar as well. Coming from three different states, they are mostly upper-middle-class and educated, typical of people who have the time and skills to seek out such esoteric therapies, basically the same kind of folks I deal with every day in our college town. We talk about meaningless things, the weather—which is always changing, this being New England—as well as about things that matter. How cuts in spending are affecting special education. About new medical procedures that our children have to undergo. Occasionally, of progress.

And it starts feeling good in its own odd way, this mundanity.

“You got enough room, Al?” one of the fathers calls as he moves his car, knowing that Al needs extra elbow room to haul out his enormous son. This casual consideration—not the condescending, you-poor-people, special-needsy politeness but just nice everyday politeness—is rewarding to us all. As Al parks and then struggles with uncorking his gigantic son from the car and then does their plodding tandem walk, a scene that would certainly draw popeyed stares anywhere else, the rest of us chitchat. For us, it’s just another Saturday at Happy Trails.

I used to wonder how they convinced the people in Gross Malformations to submit themselves as models. The photos are uniformly stark, wholly unflattering black-and-whites. The subjects, when their faces are shown, stare off without a trace of emotion—no happiness, rage, shame, anger, or pride. They wear no clothes, no identifying markers except for their deformities. What would be in it for them? I wondered. I doubted they would go home and tell their friends, Hey! I’m appearing in this book called Gross Malformations!

But I remember when I started imagining the people—webbed hands, gaping cleft palate, an unclosed abdominal cavity through which small intestines poke out like polish sausage—back in their lives, back at home with their “gross” malformations. There was probably an altruistic sense that they were helping the cause of medicine. But maybe also a sense of belonging—there’s no reason to be embarrassed over being naked and showing off one’s deformity when everyone else was naked and showing off, too. The more the merrier.

And we, too, welcome any and all to our select society. With our cups of coffee and cars with the handicapped placards hanging off the rearview mirrors instead of graduation tassels, there we stand with our jagged, battered hearts in the middle of life, our lives, lives about which the Buddhist in me says simply: They are what they are. And, just the way I imagined the models for the Gross Malformations book did, after our sessions are over, we pack up our kids—wheelchairs, crutches, braces, damaged brains—and head back into the world with all its grimly fixed judgments, all the while contemplating, What is normal, exactly?

Author’s Note: J now seems to prefer bulldozers to horses, although he occasionally speaks fondly of Kimmie. We have come to the conclusion that autism is a biological disorder of the immune system triggered by environmental factors and thus, his cancer and autism might not be a case of lightning striking twice, but may actually be intimately related, and we are pursuing treatments in this direction with so far small, but significant, improvements.

Marie Myung-Ok Lee is writing a novel about and OB and the future of medicine (forthcoming in 2015 from Simon & Schuster). Her essays have appeared in The New York Times, The Nation, Slate, Salon, and The Atlantic. She teaches creative writing at Columbia. You can find her on Facebook.

Brain, Child (Winter 2006)

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A Flair for the Dramatic

Posted on May 19, 2014 by CNF • Posted in Articles Page • Tagged Aaron White, autism, daughters, fathers, fathers and daughters, special needs • 3 Comments

By Aaron White

Self-Injury

I’ve always had a flair for the dramatic. I’m not proud to admit this. A large part of me wishes I’d outgrown it by the time I reached adulthood. The ideal portrait I’ve always painted of myself is stoic, collected, but I know otherwise. When I was a kid, I often babysat my three younger brothers. I was too young to be left in charge of children, and after hours of angrily trying to corral them, stifle them, all in the hopes of preventing spilt milk on the linoleum or broken glass in the bathroom, I’d had enough. In seething, utter frustration I grabbed my whitest shirt and soaked the front in stage blood from the previous Halloween. Corn syrup crimson, I let it permeate the fabric and rest on my stomach. I then pulled a steak knife from the kitchen drawer and screamed for all the neighbors to hear. Collapsing to the floor, shutting my eyes extra tight, I felt the clustered patter of bare feet. They approached me, timid and cautious. I tried my hardest not to breathe. Soon, a blanket was thrown over my dead frame, and their bellows of laughter were chased by the intense melodrama of my searing rage, pursuing them to the other end of the house, steak knife in hand and bogus blood caked to my torso.

Tantrums

I’ve always had a flair for the dramatic. I’d gotten better about hiding it by the time my daughter was two. I remained stoic and collected in the cold exam room, antiseptic white. My wife, Tiffany, nervously rapped her heel against the slick linoleum. What was concern for an earache soon turned into questions about Harper’s severely regressed speech. The doctor showed unnerving angst for the early stages of autism. That evening, I locked myself in my office. I shut the door tight and wept in secret. I wept and cursed and spat without shame. I slammed my fist on my desk. I knocked pens and paper to the floor. I stomped my feet and hit my head in unison. I despaired the loss of my normal child. What little experience I’d had in the public school system taught me that autistic children are awkward. They’re good with computers, sure, but they walk on their toes and struggle to end a sentence. These kids are corralled into special education classrooms and taught how to shut up, sit straight, act appropriately, and smile accordingly. I collapsed to the floor and wished for a blanket.

Speech Delay

I’ve always had a flair for the dramatic. I try not to let it get the best of me. Just a few weeks before the final diagnosis, before hours spent pouring over pamphlets and web pages and online seminars, before working with a slew of speech and developmental therapists, I got out my phone and snapped a photo of my daughter. Tiffany was away and in my absentmindedness Harper got a hold of an apple. Before I could catch her she’d already started in, her teeth dug tight into its green flesh. The juice bled down her chin and permeated the collar of her shirt. She babbled happily, plump cheeks resting atop a wide smile, and ran from the kitchen to the living room to devour her well-deserved spoils. As she finished up, I wet a napkin and tried to wipe her down. Before I could reach for the core she handed it to me, mouthing in a little voice I so little heard, “Apple, Dada.” I smiled and welled up inside. I inflated and I danced. I stomped my feet and hit my head in unison, in laughter. I hugged and kissed Harper, welcoming her confused, timid expression. I eagerly called my wife and tried to speak but found my mouth useless. The photo was sent to her instantaneously. We rejoiced over the scattering and reassembling of digitized pixels, an accomplishment and reminder that our daughter was going to be okay.

Aggression

I’ve always had a flair for the dramatic. Sometimes it can’t be suppressed. In the pediatrician’s office three hours from home, they diagnosed Harper as autistic, but it sounded wrong. Tiffany’s eyes welled up big and wet and I tried to remain stoic for her and my little girl. I tried so incredibly hard to keep myself from shouting “bullshit” and throwing my chair. Two well-dressed, tight lipped, closed-minded strangers evaluated Harper for a mere hour and a half. They bled color from the word “autism.” They dismissed two years of laughter and growth and love to throw it over her like a wet blanket, to stifle her with a condemnation, a disease, a sickened, blackened word. This was not the same portrait of autism I’d come to know. It was not a new way of thinking, but a wrong way of thinking, of seeing the world. “Take advantage of the Social Security benefits,” they told me. “ABA therapy,” they told me. I wanted to stomp my feet and hit my head. I wanted to shove that picture in their faces, show them my little girl, my Harper, standing on a kitchen chair with that bright, green ball of fruit in her hand. I wanted to tell them, “Apple, Dada!” She said two consecutive words! Unprovoked! She associated the abstract with the tangible, god damn it, can’t you see? I wanted to hold a steak knife to my gut and shout, “Look at me! Look at me!” I wanted them, for just one second longer, to avert their eyes from my daughter, to cast that blanket over me.

Repetitive Behaviors

Harper has a flair for the dramatic. She can melt in a mere moment, kicking and screaming, flailing her arms and legs like something wild. Harper will bite and pinch. She will shake her fists and flap her hands. She will also laugh. And kiss. And wrap her arms around my neck so tight I’ll forget to breathe. Late at night, when I kneel over her bed and the blinds allow only a modest amount of white moonlight to enter the room, I’ll feel her plump arm reach out to me from the void and pull my head toward her chest. Harper’s heart thumps rapid and rhythmic and I know she’s narrowly escaping some nightmarish landscape of phantasm. I pull her fleece blanket close to her chin and static pops in small bursts of blue light, like Fourth of July sparklers, enticing and delusive. I’ll close my eyes and listen to her breathe. When she swaddles my face in milky gusts, the tension finally loosens its grip.

Aaron White recently earned a graduate degree in creative writing from Eastern Illinois University. His work has been published in The Tonic and Heart. His fiction and poetry has won awards from The Academy of American Poets, The Mary-Reid MacBeth Foundation, and The James Jones Literary Society. In grad school. This essay is his first venture into creative nonfiction.

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Things

Posted on April 21, 2014 by CNF • Posted in Blog, Featured Blog Posts • Tagged autism, blended family, children and childhood, family, Kerry Cohen, marriage, parenting, relationships • 1 Comment

By Kerry Cohen

James and I were going to get married at city hall, so I went to the den to tell our combined four kids. Ezra, my ten-year-old autistic son, shook his head.

“No married,” he said.

“You’re coming,” I told him. “I don’t make you do a lot of things you don’t want to do, but this you’re doing. My children will be there when I get married.”

I went back upstairs, rushing around to get things together to leave. Ezra showed up in the kitchen with a blue pool noodle.

“Can you marry this?” he asked.

I laughed, but I did. I performed a quick ceremony in which the pool noodle and I became husband and wife. I never know what is going on in Ezra’s head, or rather, it can take me a while to figure it out. Ezra watched me the whole time like I was crazy, so clearly I wasn’t understanding. He followed me into my bedroom, holding the pool noodle, and he lay on the bed.

“Are you upset that I’m getting married?” I asked him.

“No married.”

I didn’t know whether he didn’t want me to get married because he wanted to stay home, playing on his computer, not having to face the uncertain world, a world he rarely understood and that too often took him by surprise, or if he didn’t want me to get married because I was marrying someone new, someone who wasn’t his father.

“I don’t want you to worry,” I told him. “Everything is going to be just the same. You’ll be here for one week, and then with Daddy the next week, back and forth like always. Nothing is changing.”

“Can James fall into a hole?” he asked.

“You want James to fall into a hole?”

“Can I ruin James?”

I sat next to him and brushed his thick blond hair away from his eyes. I understood this was a big deal for him. It was for all of us. Both James and I had two children each, and the past four years of blending our families had been immensely hard, riddled with complications and arguments and negotiations about how we could make it work. It had been a long road, and I didn’t expect it to get easier, but we had finally made it here.

“I love James,” I told him. “I don’t want him to be ruined or fall into a hole. James loves you. Daddy loves you. And I love you.”

He pointed to a laundry basket. “Can I marry that?” he asked.

“The laundry basket?”

“Can I marry that?” He pointed now to the pool noodle.

“The pool noodle?”

“Can I marry things?”

“I don’t think so,” I said. “I think you can only marry humans.”

“No humans!” he said.

I understood then what he was trying to wrap his head around. Things. They had long been important to him. It’s a classic symptom of autism: more interest in things than people. When he was little, he carried around the flat foam inset animals from a book. If he lost one of them, like the purple cow, he grew upset enough that we had to spend hours retracing our steps to find it, more often than not buried in the mud at a park. We thought we’d be smart and buy a second copy of the book with the flat foam inset animals, but then his collection included two of each animal, and there were more things to lose.

James had been listening to my conversation with Ezra. “Ezra,” he asked. “Do you want to bring the pool noodle with us to get married?”

“Yeah,” Ezra said.

So, we did. The two other boys used it to chase and hit each other, swatting one another on the back. Ezra dipped his shoes in mud, paying no attention to us or the pool noodle, and James’s daughter held all the flowers. It will forever be a part of our story. Because Ezra was right about this one. James and I are the ones doing something terribly difficult, blending our two loopy families and trying to make it work. Almost weekly, something happens in which I feel like I can’t do it, this was a mistake; I should have just married the god damned pool noodle instead. So, I get it. Things. They’re comforting. They’re uncomplicated. They make sense. If you lose one of the parts, you go find it. Usually, it can be found. Whereas we humans can hardly communicate our feelings are so complex. And then we wind up divorced, like Ezra’s dad and me did. The things you lose don’t always come back.

Kerry Cohen is the author of six books, including the memoirs Loose Girl: A Memoir of Promiscuity and Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal. She practices psychotherapy and writes in Portland, Oregon, where she lives with the writer James Bernard Frost and their four children.

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The Invisible Boy

Posted on February 27, 2014 by CNF • Posted in Blog, Featured Blog Posts • Tagged ADHD, Angelena Alston, Aspergerâ€™s Syndrome, autism, children and childhood, emotions, parenting • 1 Comment

By Angelena Alston

“He not singing Mommy,” my three-year-old daughter half-spoke, half-shouted in the crowded middle school auditorium. A few heads swiveled towards us and knowing smirks broke out on the faces of people nearby. Like any good mom would, I hurriedly sshhed her. She went about her business and continued digging in my purse for a handful of multicolored goldfish. The stage was a sea of white tops and black pants. My son was on the far left, almost at the end of his row. And, as usual, my three-year-old was right. Her brother was barely mouthing the words to a popular Christmas song.

My ten-year-old son has a nice singing voice. For the concert that night he had been excited to the point of nervousness. He’d spent days telling me the songs they were going to sing over and over again. Yet, there he was with a faraway look in eyes, his lips barely moving. It’s not that I was surprised, each year he’d stand there looking constipated and barely mouth the words. Admittedly, some years were better than others.

I leaned back in my chair and tried unsuccessfully to grab my purse back from my daughter as she continued to stuff her mouth with pilfered goldfish. It wasn’t always like this. When my son was three and in pre-school he had been so smart, so full of energy and personality. When his class had a nursery rhyme hit parade, he stood in front of a large group of parents singing with the rest of his classmates. He had to go to the bathroom and was holding onto his private parts for dear life during the whole performance. He never stopped singing.

That was Before.

Long Before changing schools, special classes, countless tears from both of us, doctors visits, two trips to the hospital, medication three times a day. Before our lives changed with the official diagnosis of Asperger’s Syndrome, and ADHD.

Even back then, at three, my son had signs of the illness: he was always lining things up, he had an intense sensitivity to noise, and he was unable to adapt to or accept changes. His diagnosis became official when he was seven, a second grader. He was the same age then as my middle daughter is now.

After he was diagnosed everything changed. He started going to a different school, he started therapy, and eventually medication for the ADHD. As he got older his symptoms became more obvious; he couldn’t get along with kids his own age, he couldn’t make friends, he couldn’t deal with everyday frustrations, and his motor skills were delayed.

Autism is so complicated because it’s not about the behavior so much as how the way the brain works; the way we form our thoughts and from there our emotions. It’s about how we make sense of the world. Without a basic understanding of how things work in a real world sense, making decisions, and dealing with other people is a constant struggle.

And the saddest part is that beneath all of that my son is so breathtakingly innocent and considerate and sweet. Anytime he goes to the store and buys something for himself, he makes sure to get something for me and his sisters. He shines, like a piece of glass half buried in the sand. It’s easy to forget the softness that exists as he harasses his seven-year-old sister, as he screams and cries because he can’t find a pencil that was “right there!” as he accuses me of stealing from him when he misbehaves and I take away one of his electronic toys.

All of this is in such sharp contrast to my youngest daughter. Whereas he is easily distracted, easily frustrated, she can be focused as a laser, able to figure out many things on her own. Sometimes I look at her and wonder if only. If only her brother didn’t have This Thing. This Horrible Thing that stands in his way, keeps him from one of the best things in this life, finding real connections with others, making friends.

I hate Autism.

There. I said it. I hate that my son’s own mind works against him, that he gets so stuck moving forward, that growing up is not only hard for him, it’s painful as hell.

Sitting at the concert, watching my son try his best to be “normal” my heart went out to him. I tried to wave and smile encouragement but we were sitting too far back for him to see me. In the end, he sang a little bit, but mostly he stood there looking stiff and uncomfortable. I felt sad for him. And then it was over, my son’s next to last concert as an elementary school student. It was a painful reminder that whether he’s ready or not, a new phase in his life is about to begin. Whether I’m ready or not, too.

As all of the fifth graders filed out the auditorium, I left the girls with their dad and headed for the cafeteria to pick up my son. I caught up with him in the hallway and we headed to the cafeteria to get his coat. As I walked close to my son, he said in a quiet voice, “How was I?” He didn’t yell it so loud that everyone nearby looked in his direction, he didn’t say it in a high-pitched voice so that he sounded much younger than his ten years.

I started to teasingly say, “Great.” Dramatic pause. “But next time you should actually sing.”

Instead, I found myself not saying a word because I had the sense something important was happening. In all the years, he had never once asked how well he had performed. If I really thought about the reason why, it’s probably because I always jump in without hesitation; I tell him how great he did, truth notwithstanding. For the first time, that night, I hesitated. For once, his mother, his faithful cheerleader, was silent; no gushing compliments, no clever quips. As I walked beside him, I suddenly realized what a toll all of this is taking on me.

I try my best to be encouraging and hopeful, to let him know he will always have me. But over the past year or so as his behavior has become less manageable and everything at home has fallen bit by bit into chaos, I have stopped trying so hard. I can’t do it anymore. It is exhausting to constantly micromanage someone else’s emotions, to have to anticipate someone else’s meltdowns. It takes so much energy to get from one day to the next. As his softly spoken question hung in the air for a beat, things seemed simple again; he was just a kid who loves his mom and wants her to think that he is good.

“You were great,” I told him smiling.

And as much as I hate autism, I love him with everything that is in me. As hard as it is, the more I can separate the disease from the essence of who my son is, the better off we’ll both be. It’s not easy to watch my son get hurt over and over, to watch him struggle. But in that moment I realized the hardest thing of all: it’s his fight, not mine. All I can offer is my love and support and hope and pray that when all is said and done that will be enough to help him get through the difficult days ahead.

I reached over and gave him a quick hug and a squeeze. He smiled, his whole face lighting up with something that I can only call pride. That’s better, I thought, feeling some of my strength come back to me. That’s much better.

Angelena Alston is a freelance writer from New York. She is a mother of three children with strong personalities. In between working as a nurse and writing she spends her time acting as a referee/confidante/chauffeur to her boisterous brood.

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Have a Nice Trip

Posted on November 6, 2013 by CNF • Posted in Articles Page, From The Archives • Tagged "Welcome to Holland", autism, childbirth, disability, Jill Cornfield, NICU, pregnancy, special needs • 1 Comment

By Jill Cornfield

If you have a baby with obvious problems, sooner or later someone will hand you an essay called “Welcome to Holland.” It compares having a baby to taking a trip—a valid enough metaphor. But this is a trip for the parents of “special” children. Instead of going to Italy, as they’ve planned, the parents wind up in Holland, where, Emily Perl Kingsley writes, the pace is slower. They are disappointed at first—they’ve dreamed about, planned and looked forward to Italy—but they come to appreciate the special beauty of Holland. Instead of Michelangelo, espresso, and churches, they come to love Rembrandt, tulips, and chocolate. For what it’s worth, some parents find solace in the metaphor. I’m just not one of them.

Our older son spent his first thirteen months in the hospital. He was a tiny baby, our first-born. My obstetricians—a quartet of women—were used to a more orderly sort of pregnancy. They were equipped to handle morning sickness, slightly high blood pressure and routine C-sections. When our baby was found to be way below the average weight on a sonogram, they stopped making quips about junk food and put me on bed rest. They grew increasingly distant as our son stubbornly refused to somehow make up the weight gain and catch up with the rest of his second-trimester cohort. Gradually my doctors handed me off to the high-risk doctors at the hospital, where I was ordered to leave bed rest and come in for daily sonograms, my main form of entertainment. “I promise you won’t be bored when the baby comes,” one said.

From the beginning, it seemed like a bad idea to have a baby delivered more than twelve weeks before term, but this is what the doctors planned. “We’ll take him out and they’ll make him grow,” said one perinatologist, referring to the neonatal intensive care unit (NICU) where he’d be placed. This sounded far-fetched to me, and I didn’t say anything, but I must have looked doubtful because she declared, “A lot of parents are really glad to have the baby out and in the nursery where they can take care of him.”

This was the day I went in for a sonogram and the perinatologist came in, went behind the curtain, and looked at the technician’s numbers. She sighed loudly before greeting me. “I’ll pray for you,” she promised. Meanwhile, the baby (I didn’t know he was a boy yet) zoomed around inside me, back and forth, over and over, in the vastness of my uterus, his tiny size making him hard to find on the sonogram but giving him lots of room to dive and roll. How bad could things be when the baby was so lively?

We spoke to the head of the neonatal unit, a dapper man with a silvery goatee who spoke in calm, measured tones. He didn’t think it was out of the ordinary to have a baby delivered between twenty-six and twenty-eight weeks’ gestation. “Most of our babies go home around the time of their due date,” he informed us. “At twenty-three, twenty-four weeks, things are rough. But you’re looking at something like a ninety percent survival rate.” My husband asked him what had led to his interest in prematurity. “All three of my children were premature,” he said, and we believed him, though we later found out they were premature for having arrived two to three weeks—not two to three months—early.

We were afraid to ask the real questions. Would our son walk? Talk? Would he walk with us to the local kindergarten, or would he ride the short school bus? We reasoned that the doctor would tell us anything we really needed to know.
Nothing prepared me for the sight of Alexander: one pound, five ounces. I’d used more butter than that to make flourless chocolate cakes. I spent about a week in a crying marathon, which made the intensive care nurses very uncomfortable, although one nurse sang to me and then said, on our second day there, that it was all right to cry and that the baby was still connected to me. I found this somehow comforting, even though we hadn’t done a very good job, Alex and I, of making him grow.

“Did he have a brain bleed? Does he have necrotizing enteral colitis? No? Then he’s fine,” snapped my cousin, who is a doctor. But I was not happy, not hopeful. Everything—including breathing, eating and medical adjectives my spell-checker didn’t recognize—was a struggle.

People tell you with the best of intentions that you’ll find yourself on a roller coaster in the NICU: There are ups and downs, good times and bad. We found it to be more like a game of pinball, with our little son playing the part of the metal ball that gets smacked around. Our highlights included intubations, painful eye exams, and spinal taps without anesthesia (“We don’t like to anesthetize these little ones—it’s too dangerous,” said the ophthalmologist), an almost total lack of weight gain (“It’s hard to gain weight on the vent,” said one doctor ruefully, although they had always been so enthusiastic about the benefits of artificial respiration), a respiratory virus that landed our son back on a ventilator, chemically paralyzed so he wouldn’t fight the vent down his throat (still no anesthesia). “Well,” said the neonatal attending physician, “I’ve seen children get this and get over it. And I’ve seen children get this and not get over it,” prompting my brother-in-law to say, “Sounds like the doctor’s taking it pretty well.”

All our “happy” news was happy only by dint of not being tragic. An X-ray: the baby’s lungs are less cloudy! An eye exam: the baby isn’t going blind! A head sonogram: the baby’s brain isn’t bleeding!

Our two months’ stay turned into three, then four months. I watched summer shimmer on my way to the hospital each day. Then leaves were falling. Then I had to dig out winter clothes.

Our insurance company paid and paid without comment the bills for $19,000, $38,000, $16,000. I think when we were all done, thirteen months later, the total topped out at close to a million, a figure that had been negotiated downward by insurance.

* * *

“It’s slower-paced than Italy, less flashy than Italy,” writes Kingsley in “Welcome to Holland.”

I was confused when someone gave me Kingsley’s essay during Alex’s second month or so. We certainly didn’t know at that point that he would be disabled in any way; we certainly didn’t know we were in for many more months of invasive medical presence in our lives. Did the person who gave me “Holland” think Alex would be mentally retarded? Did she think I needed a different lens to view our experience as one that was beautiful if you looked at it the right way?

It turns out that lots of people with babies in the NICU (Neonatal Intensive Care Unit) are given the Holland essay, a piece I think is completely off the mark for anyone with an extremely premature baby, because Kingsley specifically says, “It’s just a different place.”

But most NICUs aren’t just “different.” Most NICUs are alarmingly alien. You have to adjust to flashing monitor lights and tiny sirens, the nurses and doctors and residents and fellows and social workers and sub-specialists—pulmonologists and gastroenterologists and geneticists and neurologists and radiologists and administrators—that come and go. You learn a hierarchy and a discipline you never dreamed you’d have to learn just to have a baby.

Our NICU experience has forever separated me from mothers of typically developing children, even though since the birth of my second son I’m the mother of a typically developing child myself. Watching women—other mothers—leave the hospital with their babies, balloons, and still-swollen bellies filled me with jealousy, rage, and misery. Rage that I’d been put in this situation. Jealousy over what they had and what I’d lost. Misery that the sight of someone else’s happiness filled me with hatred.

Soon after I read “Holland,” a therapist breezed into the isolation room we shared with another family and introduced herself. “Hi! I’m back from maternity leave!” she said. Unable to smile and greet her pleasantly, I settled for a mumbled hello, looking down at some knitting that I’d intended to be stress relieving.

Kingsley writes that it’s important to note that you’re not in a “horrible, disgusting, filthy place, full of pestilence, famine and disease.” But the experience of having a baby in the hospital is akin to being tortured in a Third World prison, leading many NICU survivors to write their own parodies and responses to Kingsley’s piece. A mother I know wrote “Welcome to Afghanistan.” Another friend agrees that having a baby in the hospital is like taking a trip to Holland—under German occupation.

Two pieces floating around the Internet—”Welcome to Beirut,” by Susan F. Rzucidlo and “Holland, Schmolland” by Laura Kreuger Crawford—give the perspective of life in another country from mothers of autistic children.

“Are they kidding? We are not in some peaceful countryside dotted with windmills,” writes Crawford. “We are in a country under siege, dodging bombs, trying to board overloaded helicopters, bribing officials—all the while thinking, ‘What happened to our beautiful life?'”

“Bruised and dazed, you don’t know where you are . . . You don’t know the language and you don’t know what is going on,” writes Rzucidlo. “Bombs are dropping . . . Bullets whiz by.”

We now live in “our own country, with its own unique traditions and customs,” says Crawford. “It’s not a war zone, but it’s still not Holland. Let’s call it Schmolland.” She goes on to describe Schmutch customs, which mirror the traits of autism. “The hard part about living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren’t always successful.”

“Holland” has apparently struck a deep nerve.

Parents of autistic children find “Holland” particularly irritating, I think, because the stresses of living with a child who is semi- or non-communicative are tremendous. There are no smiles from sympathetic native speakers. You don’t speak the language, and there’s a real chance you never will.

“Holland” makes it seem as though disability is a one-size-fits-all package tour, when disabilities and their effects on families are as finely shaded as the differences among pensiones, hostels, and four-star hotels. Most families learn to cope with mild dyslexia, but most parents of severely brain-damaged children generally grapple with serious depression throughout their lives. It feels like “Holland” is telling us not only not to feel sad, but to feel happy in a specific way. Like the hospital personnel who seemed amazed or put out whenever I expressed sadness or anger, Kingsley seems to believe that emotional responses can be generated consciously, and that a little positive thinking is all that’s needed to smooth some ruffled travel plans. Hey, it’s not a canceled boat ride or a closed museum. It’s an adventure!

How should I feel? “Holland” told me, back in those NICU days, that I should feel good. But I didn’t. There is a crumb tossed at the end, where Kingsley acknowledges that the disability of a child is indeed cause for sorrow, calling it “a very, very significant loss.” You’ll feel sad, she says, but if you focus exclusively on the sadness you’ll miss out on the beauty of the life of your child. The mother of another premature baby wrote that her problem with “Holland” is that it was always sent to her by someone without a disabled child, and it made her hesitate to express any negative feelings—”kind of like they were saying, ‘This is how you should feel. Now no more talk about pain, grief, depression, and exhaustion from you!’ “

To the social workers and perinatologists who claimed that parents are thrilled to have a live baby—even one in a hospital—I can say only that not everybody responds identically to similar situations. One mother used to post on an online board for the parents of premature babies. Her child was in the NICU for eighteen days, and I used to wonder why she would post messages at all when so many of us had children who spent months in the hospital. Now I realize that those eighteen days were hell for her—a nightmare that she still relived—and that her worries for her child were every bit as real and valid as mine for my son.

* * *

At the same time parents are struggling with their baby’s NICU course, they are reassured by NICU staff that all will likely turn out well. The prevailing NICU attitude was (and still is) that most premature babies do just fine. That more than sixty percent of babies with a birth weight over three pounds grow up without significant disability.

But my gut always said otherwise, and seven years after the NICU, our son is, in fact, developmentally disabled. Not delayed: that implies he will catch up with other children. When Alex was three, the school board reviewed his evaluations and classified him as a child with significant and severe delays, about fifty percent in most areas, qualifying him for a funded special-ed preschool with built-in therapists. We were glad, because it was what he needed. We were sad, because it was such a clear-cut case.

By now, I’ve had plenty of time to reflect on the sort of expectations Kingsley writes about in “Holland.” I never wanted brilliant children. I never dreamed of my children going to Princeton, Yale, Harvard, taking the academic world by storm in physics or comparative literature. All I really wanted was a baby to play with and some more company at the dinner table. I imagined taking walks in late winter, looking for trees in bud and the first crocuses, discussing how little birds sometimes take their baths in water, other times in dust. I looked forward to all the school stuff–the mimeographed homework assignments and gluey projects and teachers mean or nice and leaving the house on a dark October evening for open school night after a hurried spaghetti dinner.

In the NICU days I used to pray that Alex not be retarded, that he not have cerebral palsy, which I always thought meant not being able to talk. What I didn’t foresee was a child who would hug affectionately and even kiss, sort of, but be so lukewarm about reciprocating anything, from a word to a ball to a willingness to engage in play.

Today Alex is six and a half. He is a child with PDD-NOS, pervasive developmental delay, not otherwise specified: a notch on the autism spectrum. In theory, that puts us quite squarely in Kingsley country. Where once we had a small baby and some hopes of a typical life, we realize now we live in a strange land we didn’t plan to visit.

For years we didn’t go anywhere, and it seemed that having a child with a communicative disorder was more akin to staying home while other parents traveled: we watched them take off for the Hamptons or the Netherlands while we were stuck in the same hot neighborhood. Instead of rejuvenating changes of vista, we summered on steamy streets. While other people spent some time in air-conditioned airport lounges before arriving at beach houses or charming old-world cafés, we were left with nothing more cooling than the sprinklers in city parks and an occasional Mr. Softee truck.

In fact, life with Alex brings to mind not travel, but a different metaphor. Alex is a cat of a boy: smaller than average, he’s sleek and slim. He has my dark eyes and his father’s dark hair and sometimes, it seems, the mannerisms of a cat we used to have—a quiet, self-contained creature who didn’t often seek attention or affection, though he did welcome it. If Alex has a toy or a puzzle or a video he likes, he doesn’t need you.

When your child can’t tell you what’s bothering him, whether it’s a fever or nausea or a bad day at school, it’s not so very different from a sick pet. I never knew how simple a child’s illness could be until my younger son got into bed with me late one night, hot and crying. “My ear hurts!” he moaned. He had Motrin; we went back to sleep; we went straight to the doctor in the morning and said, “He says his ear hurts.”

Alex’s teacher for kindergarten and first grade writes daily to let us know if he seemed tired or enjoyed circle time. If not for her detailed letters, we’d never know that he was doing yoga, that he is fond of carrying around a plush hippo, that he seems to like spending time with his classmate Robert, never know what the red Special Olympics ribbon was for: courage, sharing, joy. What did he share? What gave him joy?

We live in a Hispanic neighborhood where the neighbors know Alex and seem fond of him, perhaps because they have a relative or another neighbor with an autistic child. “Alex is drinking from the puddle at the sprinklers!” they’ll holler at me on the playground. When he rummages through their strollers or bags, they laugh and let him. Often they share with him the chips that attracted him. Occasionally they gently lead him away.

In the playgrounds of more moneyed neighborhoods, we get the looks. Yes, I know he’s in someone else’s stroller. I know he’s taking a plush Elmo doll from a toddler who is walking with her Jamaican nanny. I know he’s spinning with his eyes shut, or leaning too far back on the swing, his expression different from other children’s. Why am I not getting up every fifteen seconds to stop him? If he’s in someone’s bag, I will intervene. But the toddlers are always well attended. The spinning or lapping from a puddle isn’t hurting anyone. And I need to sit in the sun, on this bench and, for a moment, not chase, not intervene.

Perhaps my biggest problem with Kingsley’s metaphor is that it simply doesn’t hold water. A traveler can always catch the next flight out, but no matter which parental country you find yourself in—whether typically developing or autistic or wheelchair-bound—you can’t fly out again.

Author’s Note: Ironically, in the United States outcomes for children born prematurely are poorer than those of their counterparts in the Netherlands, where neonates below specific birth weights and gestational ages are generally not resuscitated.

Brain, Child (Summer 2005)

Jill Cornfield lives in New York City with her husband and two sons.

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Learning Autism

Posted on October 7, 2013 by CNF • Posted in Articles Page, Highlights • Tagged autism, birthday parties, children, jennifer smyth, mothering, special needs • 19 Comments

By Jennifer Smyth

The minivans and SUVs all arrived at once. I held the screen door open as the girls bounced into the house. My daughter Holly had wanted a “Holly-ween” themed party for her 8^th birthday and had invited the 12 other girls in her class. Since it was October, and school had just started a month before, there were a few new faces at our door.

One of those faces was framed by long brown hair that had wayward strands tucked behind one ear. Her name was Emily. The large smiling skull on her purple shirt stood in contrast to her petite frame as she almost tip-toed through the doorway and into the foyer. The last one to arrive, she was instantly enveloped by a throng of excited, screeching girls. Nick, my son, and Holly’s twin brother, was also jumping up and down with excitement, his arms straight and stiff all the way down to his wrists; his hands flapping wildly.

Although Nick went to a different school, most of Holly’s friends knew him from past parties and events. Their interest, curiosity or fear depended on their own personalities, prior experience with “a Nick,” or just the mood du jour. But he was a new experience for Emily. She took a step backwards and stared at Nick, who was a head taller than her and built like a linebacker.

“Emily, this is Holly’s twin brother Nick.” I said, kneeling down, keeping Emily to my left and shifting Nick to my right. And then knowing he was listening to me, despite the fact that his hands were still flapping and he didn’t make eye contact, I spoke to Nick.

“Nick, this is Emily. She’s in Holly’s class this year. Can you say Hi?”

Nick, completely wrapped up in the excitement of the moment, ignored my request and continued to jump and screech with glee.

I herded everyone into the living room, which was adorned with cobwebs and Jack-o-lanterns. Holly and Nick were having separate birthday parties and Holly had been involved in every aspect of the party planning, paying special attention to the décor. “Mom, it can’t be too scary,” she had said. Some of my friends won’t like that.”

Sure enough, we had to remove a dangling skeleton for one friend and a furry spider for another before getting down to the business of tossing bones into cauldrons. Emily was in the corner crying. Tiny little Emily, in a house she had never been to, with grown-ups she had never met and a boy who had very confusing behavior. I crouched down next to her, and saw Holly watching me from across the room.

“What is it sweetie?”

“I want to go home,” she sniffled. She was looking over my shoulder, nervously scanning the room. When she saw Nick, she visibly tensed and cried.

“Is it because of Nick?” I asked. She nodded.

It would be disastrous if she left the party before it even started. My heart ached for my misunderstood son and for my super sensitive daughter who would internalize her shame and anger. And perhaps worst of all, Emily would leave not knowing “a Nick.”

“Emily, please stay. We have lots of fun things planned.”

“I want to go home.”

“Emily, will you do me a favor? Will you be my special helper? You can stay right by my side. Will you try? If you still really want to go, I promise we can call your mom.” She nodded. I needed to show her Nick, not tell her about Nick. The scary skeletons and spiders could be removed, but Nick was permanent.

Although my husband Brendan and I were both home, we had enlisted the help of our niece, Amanda for the party. She had been our go-to babysitter for the last four years. The girls would be vying for her attention. In addition to being “young,” Amanda had beauty and charisma that rivaled the Disney stars the girls worshiped, and more importantly, she was a Nick expert.

Amanda was kneeling down helping one of the girls tie her shoelace when Nick came running up from behind, crashing into her with a big laugh. I pretended not to notice as I asked Emily to help me get the toilet paper ready for The Mummy Wrap. Just keep her close. Let her take it in.

Nick was playfully flicking Amanda’s hair and anticipating her response. She finished with the shoelaces and then reached around and grabbed Nick into a half hug, half tackle while her fingers disappeared under his chin and he laughed his infectious hearty laugh.

In groups of three, the girls raced to be the first team to use all their toilet paper to completely mummify one member. While Emily was safe inside the winding spirals of two friends’ rolls, I waved Brendan over. “Emily is afraid. Can you keep Nick happy, but on the outskirts as much as possible?” I whispered. “I don’t want her to leave, it will be so upsetting to Holly.”

The only problem I could foresee was if Nick wanted me and only me, which happened sometimes. In that case, he would zero in on me like a drone set on its strike zone. He would relentlessly pull at my arm and make loud vocal demands, until I either gave in, or Brendan removed him kicking and screaming. But for the moment Nick was happily ensconced in the chaos of the party.

Once all the mummy wraps had been cleaned up, Emily and I led the giddy girls into the kitchen where those who dared stuck their hands into dark holes to feel zombie brains, witches’ hair and frogs’ eyes. The girls squealed with disgusted delight. Nick came bounding in, grinning ear-to-ear and shrieking before running back out. Emily barely flinched. She had her hand inside a hole, no doubt wondering about the authenticity of what was dripping through her fingers as she squished it.

The girls gobbled up the bread stick “fingers” dipped in pizza sauce before the graveyard cupcakes. As they ate, Amanda summoned them to the living room for Halloween Bingo. I was back and forth from the dining room to the kitchen, clearing plates and getting drinks, until all the appetites were satisfied and all the chairs were empty, including Emily’s. Yay Emily! I exhaled. She had scooted off with the other girls, no longer needing me at her side.

Nick ping-ponged in and out of the rooms, with various levels of excitement; exhibiting the same behaviors that were novel before and which were now “just Nick.” When the front door creaked open for the first parent collecting her chocolate faced, party weary girl, Nick came running. Danielle, who was a regular at our house said goodbye to all the girls, and then turned to Nick with her hand up, “High five?” He high fived her as she left. When Emily’s dad came to the door, Nick came running once again. Nick and Emily were standing in the same spot where it had all begun a few hours earlier, but Emily wasn’t retreating. She was cautiously waiting. For what?

“Do you want to give Nick a high five?” I asked. She nodded. Nick smiled as she high fived him, and I whispered in her ear. “Thank you for staying. I’m proud of you”

That night after I tucked Nick in, I went into Holly’s room. She was sitting on her bed with a look that told me there was something on her mind. Her perfectly shaped lips didn’t turn up at the ends to smile and she had that lost-in-thought gaze, as if trying to solve a puzzle in her mind.

And then the invitation, “Mom?”

“Yes Holly?”

“There’s something bothering me. “

I had an idea where this was headed, but I waited.

“Emily was afraid of Nick at the party today.”

“I know sweetie.”

“It hurt my feelings.”

It had hurt mine too, but I didn’t tell her this.

“I understand, but remember, lots of people have never met “a Nick” before,” I said. “And Emily stayed even though she was afraid and by the time she left, she gave Nick a high five. That’s how things change, one person at a time.”

Holly pushed her long brown hair away from her face, and snuggled into her bed. I began to tuck her into her pink teacup-patterned sheets. She had outgrown both the color and theme of the sheets, but she hadn’t outgrown the ritual of being tucked in. First the sheet, then the blanket, and finally her down comforter. She would kick it all off before even falling asleep, but this was our ritual, and I would do it for as long as she would let me.

Jennifer Smyth is a work in progress. She lives in Fairfield, Connecticut with her wonderful husband and two amazing kids.

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The Inner Husband

Posted on August 26, 2013 by CNF • Posted in Articles Page, Featured Content • Tagged autism, children and childhood, conflict, parenting, relationships, special needs • Leave a comment

By Patricia Stacey

In 2003, I was invited on a radio show to talk about a book I had written about parenting. During a commercial break, the host asked me if I wanted to read a passage. Sitting across from me, tall and stately in front of a large microphone, Diane Rehm, the celebrity I had known for years, (though only through her voice), pierced me with her elegant eyes and I knew something about myself in that moment that I hadn’t understood before. While my book was about helping my young son Ian* recover from autism, the passage I wanted to read had nothing to do with him. Or, everything, depending on how you look at it. What I wanted to read was about the most intimate aspect of my life—my marriage. While Rehm waited for my reply, I realized something even more surprising about myself. I didn’t just want to read the passage about my marriage on national radio; I had to.

If there was any truth to my life as I raised a child at risk for autism, it lay in one ridiculously obvious “secret.” My husband Dave* and I were unhappy. For months we had been like two dogs tied together to the same pole, circling it, around and around, while our chains clanked and strained. We were caught in our certain knowledge that the problem with our lives was each other. Why would I want anyone to know that?

As I paged through my book about how children develop, how the brain functions, about how to help re-write a kid’s brain, I became aware of the world of listeners about to rejoin our frequency. I felt a strange and intimate bond with the listeners. I could not see them but felt them waiting, ready to be as done with their commercial break as I was ready to spill. “You have two and a half minutes,” Rehm said. I began flipping through the book. My fingers felt as if I was trying to find my keys outside in mid-January—fumbling, stiff. I knew the opening line about my marriage as if my heart had engraved it on the page. But where were the other words when I needed them? My eyes darted. I couldn’t focus. Words doubled, shifted. I flipped and I flipped. “Ten seconds,” someone warned. “Nine. Eight. Seven. Six.” A green light turned on, and in that moment the page fell open. I nodded that I’d found it and she began her introduction. And then I read.

The passage described my worrying about Dave coming upstairs to our bedroom. During that period in our lives, I was doing an intensive form of therapy with our toddler, ten twenty-minute sessions a day. Because he had early signs of autism, hypersensitivity, an aversion to human interaction, we needed to train him to become used to a world of human interaction (a job which fell largely to me). The prescription? Play, play, play. Smile, smile, smile. But don’t smile too much; that would be too much for him. I was so tired, so played out, so back-and- forth-communicating-with-a-toddler- wiped-out that I was raw. (Imagine Scheherazade, staying up all night to be entertaining, fearing death … oh yeah, but without the sexy parts.) I often joked that it had been like doing stand-up comedy to save someone’s life. I was so tired of interaction that if you’d plucked me and dumped me on a nuclear sub, I would have wept with joy.

In fact, in that period, I had become, in many ways, like Ian. I was pulling away from a world that wanted too much from me. His autistic-like nervous system was so sensitive he could not tolerate the rustling sound of a plastic bag. Stress, work, and mother-anxiety (scourge of all prophylactic manufacturers) was rupturing that thin filament that connected me to my husband. But crisis had brought out something fierce and unrelenting in me. If my hands had stiffened that day on the radio show while trying to find the passage about my marriage, some deeper part of myself had also stiffened.

Helping my child with autism become highly social had been an ecstatic experience, probably the single greatest accomplishment of my life. But there had been moments along the way when I felt like I’d been sent away to war. Ironically, too often, the blitz had been on home turf. When Ian’s psychiatrist, Stanley Greenspan, had learned of Dave and my constant disagreements, he said quite simply and firmly: “Don’t!”

And we didn’t—for a while. But conflict can engulf a home like defoliant spray, settling on everything alive. It stopped up our senses, corroded our peace. Like villagers in times of heated strife, Dave and I took to using whatever implements we could, inept tools not designed for the job of warfare. The tool we used too often was silence, its own kind of weapon. Do not try this at home.

Over the radio I read: Evenings, often, I lay in bed at night before Dave came up, my body humming still with an edgy static from the hours of frantically gesturing and moving and touching and talking and endlessly, endlessly talking and touching our toddler—hours of what the therapists called “rapid back and forth”—I worried about my husband coming upstairs. I had in those moments a rocking repulsion to the idea of more human contact. Full disclosure: I’d loved reading the word “rocking repulsion” on the radio. It was a relief to tell the truth. Like being in a double bed alone—where you can take up all the space for yourself.

Night after night those early years after Ian’s diagnosis, I often went up to the bedroom by myself to read and research whatever I could to help our son. Dave and I hadn’t been talking much after one rich blowout about selling the house, an old argument we were recycling just to throw some battery acid in each other’s eyes. He wanted to sell; I didn’t.

But after I read the piece on the radio, I immediately felt guilty. All the way home, I remembered one glorious evening. Ian was about two. We were having rendition 289 of the house fight—I went upstairs to read. I wasn’t passion- ate those days about my marriage, but I was at least a passionate student—thrilling at the ideas I encountered in brain and child development books. The book I was most in love with at the time was The Growth of the Mind by Stanley Greenspan. I nestled it between my knees and read about how the emotional self develops in a human. We come into being as sentient selves only by virtue of our senses. Senses in a newborn teach the brain how to learn, how to notice, how to love. It was like nothing I had ever imagined. A baby doesn’t come out done; he comes out ready to learn and to become what he needs to become. In fact, the world itself is what teaches the eyes to see and programs the heart to love. So what about my little boy, whose senses struggled to bear the unbearable world? Or what about me now—so “touched-out”—who sometimes thought I would scream if someone so much as asked for a back rub? That night as I sat in bed and read The Growth of the Mind, the question was still: Did I even have time to think about my marriage? Ian was still a toddler. There was a time limit to when all this brain programming was going on.

The problem with hypersensitive kids is that they often can’t let in the information that will teach their brains to see, hear, and understand. Now all of a sudden, science was changing. Out-of-the-box thinkers like Stanley Greenspan were saying that you could reach a hypersensitive baby, change the course of his life. You could teach him to tolerate the everyday noises that make up the life of a healthy, social baby. But there were windows of opportunity; I often feared the windows were closing. Back then, scientists believed we had just a few months to reach our son, or maybe a year or two. That made it even harder to think about my husband. To even change the subject was to betray our baby. The idea was to give him so much attention that he would become used to it, seek it out, learn to one day play at conversation like a maestro. So what did that leave for my marriage? A nagging sense that while Ian grew closer to us, we grew further apart.

One night when I was reading The Growth of the Mind, I left the bed, padded in my slippers downstairs, and sat beside Dave on the couch. “OK,” I said, “Greenspan believes that the highest point of maturity is when you can discuss something emotionally charged with someone and maintain a picture in your head of that very person and one of yourself simultaneously while you talk.”

Dave looked at me. His eyes looked hollow and watery.

“Are you willing to try that?” I asked.

He nodded.

“OK, you talk first,” I said.

“We need to sell the house.”

“You feel we should sell our house because…?”

“Because I am concerned about money. I’m worried about the baby needing therapy and we need to downscale.”

As he talked about moving, my blood pressure began to rise. I felt fluid surging through my wrists, making them hot and cold at once. I tried to imagine myself going through the process of moving, packing boxes, talking to agents, wrapping knick-knacks, cleaning and making beds and organizing—imagining, all the while, my toddler lying in a corner, staring out the windows, disappearing behind that veil I had seen drop so many times—with “stared though our windows to the outside world.” I saw the lost moments, imaginary days passing like pages off a cinematic calendar, Ian’s neurons starting to trim themselves away for good. I was swimming in images of what it looked like to cut neurons, tallied up all of the hours of therapy lost to this senseless packing and moving of objects from one place to another, all to save some money. I wanted to jump off the couch and yell: “Let’s just set the house on fire if you want to downsize!”

But then I remembered Greenspan’s exhortation. I tried to calm my mind, to lose the scary images, to take a breath and bend my mind back to the place of focus. I quickly brought the little action figure of my husband back into the forefront of my mind and at the same time, I focused on an image of the little hologram of his wife, me, beside him. And the image of Dave began to take true form—a man who told silly jokes, a man who had to get up every Monday morning at 6:00, a man who was feeling that he couldn’t hold up this huge, as he put it, “ship” anymore. All this time we’d been arguing, I’d been frightened by his anger. But now I saw what I hadn’t seen before: a man who wanted rest himself, who was tired of paying big bills. I think I saw him as he really was. I knew that he was frightened. And I felt then that this ability to hold the image and under- standing of the other person in your mind while holding onto an awareness of yourself—to Greenspan, the highest level of emotional maturity—wasn’t just the theory of a Harvard-trained brain. It occurred to me that it was a call to enter the spiritual life itself. Reaching this level—even if I was only able to do it for a few minutes every now and then in an argument—helped me to see the ways that we are all bound together, intricate, defined threads in a tightly woven cloth. Greenspan’s method brought me out of my self-pitying, my tired, my nagging mode for a few moments to truly be a friend to my husband. I told him that I thought he was right; we needed to sell the house.

And in that moment, his eyes opened, they lost their watery distance, the glaze. They rounded and cleared. I think he saw me too that night. Maybe he was looking at the figurine in his own head of a tired woman who’d been feeding a kid who vomited three times a day, the woman on a mission who spent time those days acting like a clown in front of her child, jumping up and down singing a strange, stupid home-cooked song she called “the bottle song.” He looked at me lovingly for the first time in so long, and he opened his arms. We held each other for half an hour and when it was all done, we did not speak about the house for many years.

* Names in this story have been changed

Patricia Stacey is the author of The Boy Who Loved Windows. She has written for The Atlantic Monthly; O, The Oprah magazine; Brain, Child; and other magazines and journals. She lives in Amherst with her family.

Imagining Autism

Posted on July 15, 2013 by CNF • Posted in Articles Page • Tagged autism, parenting, relationships • 9 Comments

By Carrie Montanez

I wake up. The light is so bright. I cover my eyes with the pillow.

“Are you getting up?” I hear my mother yell. She doesn’t know she’s loud but she is. She could call much more softly.

I throw the covers off and roll out from under the pillow. These sheets are scratchy against my skin – I don’t like that. I should probably tell Mom so she can get me new ones. She doesn’t know about that either.

I look around my room. I see my toys by the wall and start thinking about them. I imagine other universes, with cybernetic beings and aliens controlling the world. If I were a cybernetic human, then I could just heal myself whenever someone shot me or hurt me. Or I could just go to the repair bay, where the cybernetic experts can fix my body.

“Don’t forget to get dressed before you come down for breakfast!” My mother’s second call breaks me from my imaginings. Sometimes I forget what I’m supposed to be doing. Mom reminds me though; she’s good at that. Some things she knows.

I go to my dresser and start digging through clothes. I’m still imagining myself as a robotic human, so I’m making mechanical noises as I move. I look for a shirt with no tag because tags really bother me. Most of my shirts have the tags cut off, but sometimes Mom forgets that. I put the shirt on, and start looking for pants. Pants can have tags; those don’t bother me. There are no pants in my dresser that I want, so I put on the ones I wore yesterday. I put on my shoes and leave my room.

I go down the stairs and into the kitchen. I am aware that Mom is folding laundry. I am aware of everything. The music playing in the kitchen. The light coming through the window. The hum of the refrigerator. The hiss of the coffee machine. The smell of the coffee itself. The smell of the laundry mom is folding. The smell of Mom. These are things only I notice. They are all competing for my attention and overwhelming my brain.

The smell of the coffee triggers my gag reflex. I’m getting good at controlling it, though. I grab a bowl and spoon from the clean dishwasher and get my cereal out of the cupboard. Then I go get the milk. I always pour the milk in first, then the cereal. Mom says that’s not the way you’re supposed to do it, but it’s the way I do it so it’s okay.

“Those are the pants you wore yesterday, hun, you can’t wear them again,” Mom says. She hands me a clean pair of pants from the pile she’s folded and tells me to change after breakfast. I nod, my mouth full of cereal, and set the pants on my desk. I sit down to eat. I take very large bites. Mom doesn’t like that; she worries I might choke myself. She reminds me to take smaller, slower bites and chew them really good. I try to remember, but I really love this cereal.

Suddenly, my little brother is in my face and he’s yelling. He’s smiling and laughing, so he must think it’s funny, but I don’t. He is too close and too loud and he’s scaring me. I push him away, but Mom snaps at me. She tells me I have to be careful and remember I am much bigger than my brother. She worries I could hurt him.

“But Mom, he was bothering me. Can’t you tell him to stop it?” My brother and sister like to bother me a lot. I don’t know why they think it’s funny. It really annoys me.

“Stop bothering your brother, little hell-demon. Be nice.” Mom tries to tell him, but he never listens. He just keeps bothering me. I get up and run outside.

Out here, it is quieter. I hear birds twittering, and I hear cars on the highway. The breeze is a little cool and smells like grass. I see my cats sitting on the porch. They come to meet me as I go to pet them. I love my cats. I love coming outside and sitting with them and petting them and talking to them. Cats are soft and quiet. I like to cuddle them. Sometimes when I come home on the bus, they are waiting for me on the sidewalk. Mom says that’s normal for dogs, but not cats.

Mom opens the door. “Don’t forget to change your pants, hun.”

“Oh, I almost forgot! Thanks for reminding me Mom.” I go back inside and grab my pants off the desk. I go into the bathroom and lock the door to make sure nobody bothers me. In the bathroom it is quiet. The lights are not too bright, but it doesn’t always smell the best. Today it smells okay I guess. Mom should probably clean the toilet, though.

I put my pants on and hurry to put my shoes back on. I don’t like the way the rug feels on my toes and feet. Mom thinks it’s a great rug, that it is beautiful and soft, but I think it feels funny. I look in the mirror. I start to imagine again. If I were a cybernetic human, I would have robot arms and a robot body and a human head. I could touch hot things and they wouldn’t hurt me. I wouldn’t have to take a shower because it might fry my circuits. I wouldn’t have to eat things I don’t like.

Mom knocks on the door. “You about done in there? Your sister’s gotta pee.”

“Oh, right!” I say as I open the door. “I got a little distracted.” Mom pats me on the back.

“It’s okay, kiddo, I understand.” Yeah, some things she gets. I start telling her about what I was imagining in there. She nods and asks me questions. It really makes me feel good about telling her what’s in my imagination. After our talk, I sit down and try to finish my cereal. It’s been sitting there for a few minutes, and now it’s mushy. I don’t like that, so I dump it out.

“Coat time!” Mom yells. It is too loud for me, so I plug my ears. When I am sure she isn’t going to yell again, I go to get my jacket on. I find my backpack and my lunchbox right where I left them yesterday. If Mom moves my things she always tries to put them back where I left them so I can find them again. I lose things very easily.

We go outside to wait for the bus. My brother and my sister are playing on the sidewalk, but I am standing on the porch with my cats. I feel safer over here. I know that they won’t bother me if they are busy playing over there. I sit quietly and pet my cats, telling them all about the things in my imagination.

The bus is here. It’s a small bus, and only a few other kids ride on it. I like to sit by the window so I can wave goodbye to Mom when we leave.

Mom says, “Goodbye! I love you! Have a good day!” and we all wave and smile. My brother and sister stick their tongues out at Mom, and she sticks hers back. I don’t like that, I think its gross, so I don’t do it.

At school, my helper comes to meet me. She goes with me to my classes and helps me with my homework. She is really nice and I like her a lot. We are friends.

All the kids in my class are my friends. They are very nice to me and they help me sometimes. They all say hello to me when I walk into the classroom.

“Are you ready for your math test today?” My helper asks.

“Oh no! I forgot the math test!” I am very nervous. Having tests always makes me nervous, even when I’m very good at things. I start to breathe in and out very quickly.

“It’s okay, it’s okay, nothing to get upset about. We studied for it yesterday and you knew all the answers so I know you’re going to do perfect!” My helper’s words calm me down and I start to breathe normally again. She is right. I am good at math and I shouldn’t worry. Besides, she will be there to help me if I can’t figure out a problem. We sit down and review for the math test. Then we go to the math room for the test, and it is really easy. I can’t believe I was ever so worried!

Later, it is lunchtime. I sit at the table with my helper and open my lunch box. Every day my mother puts an apple into my lunchbox. I don’t like them, but I try to eat a little of it anyway. Mom doesn’t like it when I throw them in the trash. I also have a sandwich with only jelly. I used to like peanut butter with jelly, but then I think Mother started using crunchy peanut butter and I didn’t like that. I take the peanut butter half off and eat the jelly side. So now mother only puts jelly on my sandwiches.

After lunch I have English class. We are reading a book. I read very well, but I don’t always understand what I’m reading. We go very slowly and read just one paragraph at a time. Then my helper and I go back through it sentence by sentence and talk about what the paragraph means. It is slow, but it is the way I learn.

In the hallway, there are lots of other kids. They are all talking and it is very loud in my head. I also hear locker doors opening and shutting loudly. I walk by the bathroom and as the door opens I hear the sound of a flushing toilet. Bathrooms always smell bad to me, too. The busyness sometimes makes me feel dizzy and makes my head hurt. I’m glad my helper is here for me.

At the end of the day, I say goodbye to my helper and rush to get on the bus. I want to make sure I get a comfortable seat. I am so glad I don’t ride a big bus; they are so loud and there are too many kids. My brother and sister get on the bus and it is time to go. When we get to our house, my brother rushes in front of me to be the first in the door. Mom reminds me that he likes to be first, but I don’t like that he always gets his way.

I want to get on my computer, but the parental controls are on. I’m not allowed to be on it until five o’clock. I decide to go up to my room and play with my toys until I can get on the computer. Sometimes I like to play with Mom’s tablet. Mom wants me to read books, but I don’t like to. Sometimes it’s too hard and I start thinking of other things instead of thinking about the book. It’s much easier for me to just play with my toys and use my imagination.

Later, Mom calls me down for dinner. She’s made me a grilled cheese sandwich, because she knows I don’t like tacos. I sit at my computer and open my digital designer while I eat. I love making things on my computer, even if I’m just painting. I like to play Minecraft and use my Lego Digital Designer. Everyone seems impressed by the things I make. They are only things from my imagination, though; I see them inside my head all the time. And I don’t like it when people are too impressed. Sometimes all that attention just makes me nervous, so I don’t like people to make a big deal out of things.

“Where does your plate go when you’re finished?” Mom asks me. I remember it goes in the sink, so I get up to take it in there. On the way I start thinking about Transformers and what I would do if I had the Matrix of Leadership and Megatron was trying to take it away from me. I would run very fast, and hide behind things, like this table. All I have to do is get the Matrix to the sink, and everything will be safe. I sense Megatron is coming around the corner of the table, so I jump up and shoot at him. Direct hit!

“Plate. Sink.” Mom reminds me. Oh, right. I got a little distracted again. I put the plate in the sink and go back to my computer. I play for a few hours, designing and creating fantastic things, until Mom says it’s time for bed. Sometimes I like to sleep on the couch, because my sister likes to sleep there and doesn’t want to sleep alone. I usually like to sleep in my own bed, in my room where it’s quiet.

Mom comes in to say goodnight, but I have been thinking and I want to tell her some things.

“Mom, maybe one day I will create a potion that will make you never get hurt, and never be tired. And all your atoms will reproduce faster. And then humans can split apart and still retain their bodily organs. And maybe I can make an aging potion so we can all stay the age we are.”

“Wow that sounds fascinating. You should go to college and be a scientist when you grow up.”

“Well, maybe I’ll go to college for one day – just to learn how to make potions.”

“Whatever makes you happy, kiddo.” Mom kisses me on the forehead and I giggle, embarrassed.

“Goodnight, Mother. Sleep well,” I say to her.

“Goodnight, buddy, I love you.” She turns the light off and shuts the door. The sheets are still scratchy. I should tell Mom about that. But at least it is dark, and the house is quiet. As I fall asleep, my imagination comes to life.

Carrie Montanez is a 32-year-old stay at home mother of three kids, living in Iowa, and Navy wife to Jacob Montanez, who is currently stationed in Pearl Harbor.

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Special Needs Children in Italian Schools

Posted on May 28, 2013 by CNF • Posted in Blog • Tagged autism, children and childhood, motherhood, parenting, special needs, speech • 3 Comments

By Michelle Pina Damiani

A perk of eighth grade in Italy is the annual gita. Italian for “excursion,” this is a three-day rite of passage celebrating the end of middle school—a last “viva!” before the students divide into specialized high schools. Nicolas returned home in bliss from his recent gita and recounted stories of boat rides to Venetian palaces, the discovery of paprika flavored Pringles, and a realization about his classmate, Giovanni.

Giovanni is in one of the other eighth grade classes, so Nicolas didn’t know him before the gita. On the trip, Nicolas discovered that Giovanni is challenged. Though his comprehension seems adequate, his speech is hard to understand, and more than that, Giovanni isn’t fluent in social norms. In short, he hugs too much. He likes to pet students’ hair, and gets closer than is comfortable—even for Italians. He also gets upset easily, and requires a full-time aide.

I can picture this child in the American school system. He would likely be in a different classroom surrounded by children with difficulties ranging from autism to oppositional defiant disorder, where he’d perhaps learn academics, but he would learn little about functioning in mainstream society. He’d have contact with non-special needs students at recess. Where he’d likely be avoided, or perhaps even bullied.

Here is what is striking about Italian schools, or at least Spellani schools. There are no bullies. Let me repeat that, because this is huge. There are no bullies. There are no Queen Bees. And there are no outcasts. My eyes fill with tears as I write this, and if you have ever loved a child who has been victim to the caste system inherent in American schools, I think you will understand why I find it so astonishing, and so moving.

Giovanni is not ostracized. He is loved and accepted. The other children—middle schoolers are as into Justin Bieber and smartphones as kids in the U.S.—have folded him into their lives. They look out for him, they allow him to pet them, they laugh when his awkwardness crosses a boundary, they gently remind him of appropriate behavior when he goes too far.

They give him a place at the table.

And he is not a special case. Gabe has a little girl with Down’s Syndrome, Renata, in his classroom. She also has an aide, not because of an IEP, but because she needed it—much like our children have been given Italian lessons simply because they need them. Yes, Renata struggles with learning academics and also managing social skills, but she is learning all this within the context of being with other children who are also learning something vital.

Everyone gets a place at the table.

The child who is reading several grades below average, the child who is atheist in a country of Catholics, the child who eats chalk for attention, the child from America who doesn’t speak the language. There is an expression in Italian, “Tutto parla la stessa lingua a tavola” (“Everyone speaks the same language at the table.”) It’s a gift to see this in action.

Because it’s not just welcoming for those who don’t have their chromosomes lined up like animals entering Noah’s ark. It’s also invaluable for the rest of the class. Students learn that everyone has value. Everyone. Initially, having a special needs peer proved challenging for Gabe. He would come home every day with annoyed stories about Renata’s atypical behaviors. Now? Gabe’s teacher tells us he is one of the kindest students in the class with her. I am grateful that Gabe is learning to feel good through empathy instead of feeling good through superiority.

And this lesson lasts into adulthood. There’s an older man in Spello who also has Down’s Syndrome. He’s a little challenging to understand, even for locals, but no one rushes him. People stop and listen. He comes into the bakery and eats his pastry behind the counter. The owners weave around him to make espresso, sometimes patting his back with a smile. And then he leaves. The community takes care of him. And in this way, he helps the community. Folding him in increases the town’s flexibility and capacity for care. Everyone wins.

It’s a lesson above all others that I hope my children take from this year. More important than how to make pasta. More important than how to conjugate irregular Italian verbs. More important than an increased sense of scope and possibility. In fact, it’s the most important lesson of all.

We, all of us, get a place at the table.

Michelle Pina Damiani is a freelance writer and food lover currently living in Spello, Italy for a year. A practicing clinical psychologist based in Charlottesville, Virginia, Michelle writes candidly about child-rearing, limitations, finding joy, and loving pasta at Il Bel Centro: a Year in the Beautiful Center. You can find her blog at www.ilbelcentro.com.

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