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Dangerous [Language]

Dangerous [Language]

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By Sara Hendery

A group of boys. Group—meaning, powerful. Young like first breath, like new morning, like unlearned words. They gather, circling around an old beat-up shed; I sit and watch from an Amtrak train paused on the outskirts of a neighborhood in North Carolina. The boys are spray-painting diligently, as in, These words must be perfect; they must make us look dangerous, masculine, like men. I watch them congratulate each other with heavy high-fives and hawks of spit on the ground.

A woman, the owner of the shed, I assume, walks out of her trailer, finds the group of boys vandalizing her property. Hey, that’s mine. That belongs to me, she must think. She’s yelling, hands swinging as if swatting flies; she doesn’t yet see what they have written. I cannot stand the thought that she will see what they have written.

The boys run, dispersing like excited cockroaches, and I see the large red lettering through the sparse trees. They have written the N-word, followed by the word DIE.

What if the boys stayed? What would the woman say to the white boys, sweaty and creamy-skinned and young? What does she need to say? What is she expected to say?

She is the only one left now. Just a woman and her shed.

I stare at the words. How dangerous, language. The boys have decided this is the woman’s destiny, these words in a place where people will see them, stop, and move forward. See them, stop, and move forward.

Words stay in the body the way lead is still visible after being erased.

The boys are the same age as my students, I think. Those boys could be my students.

The train begins to pull away. Slow, like churning butter. I do not see the woman’s reaction to the words, only her approach to the shed, to the stain left on it.

Dangerous [adjective]:

Able or likely to cause harm or injury;

likely to cause problems or to have adverse consequences.

 

I.

I spend most of my days waiting. For my students to sit down. For boys to return what they have stolen from my desk. For girls to cover their exposed cleavage after having been told to by guidance counselors and teachers. For students to do what they are told. It is fall, I am twenty-two, and at my new job as a middle school journalism teacher, I am given a lot of advice about how to handle children—mostly, they are not called students, but children, boys and girls. The teachers in the lounge sometimes tell me, Boys will be boys, but never, Girls will be girls. I think about the distinction a lot that year.

I start every class with my seventh graders by playing music, often a “Top Hits” station that students beg me to play. I hear the words whore and slut in the chorus of a song, though, and turn down the volume. I hope they didn’t hear it. I think of the girls in the class; I think of the boys in the class. I am always thinking of the boys and girls in the class.

The leader of the boys in the class says, You a white lady who don’t understand black boy music. I know this boy is the leader because other students look to him before they laugh, and I look at him, too, sometimes; he’s smart, quick. The alpha of the pack. The class roars at his comment.

Ha!

Ha!

I’m afraid it is the students who don’t understand. I talk to the boy openly about why I turned down the music. How it is not about my race, not about my gender. It is about you, I say, my student. I don’t want you to believe in those words. But he doesn’t buy what I say, and I’m afraid I don’t either.

Later, I see the alpha in the hallway, and he calls me my white lady when he passes me, when he is with his group of followers. That’s my white lady, he says. When I turn, he is already walking away, being pushed forward by the others in the hallway. I’m gone; he’s gone. The group of people is gone, and without my saying anything, he now has me. I am taller, older, paid a salary, and I am afraid of the alpha, afraid of what he thinks, of what he will continue to think. I want, deeply and profoundly, to understand him. But to him, I have been made, not a woman, but a certain kind of lady.

Lady [noun]:

A woman who behaves in a polite way;

a woman of high social position;

a man’s girlfriend.

 

II.

If you were invisible for a day, what is one fun thing you would do?

It is the middle of the year. I ask a question while I take attendance every day. I look forward to this part—when my students re-become students.

A boy raises his hand. He sits in the back of the room, slumped in his chair, like an old jacket. He never volunteers, but he has a noticeable presence; I often admire his boldness. Please say something, I think. In my head, I tend to name him man because his voice is deep and he towers over me in a way that makes me feel small. The other students rarely question him. He looks like a man. Talks like a man. Technically, he is a boy.

If I were invisible for a day, I would rape any woman I wanted, he says.

The class laughs, like frozen peas rolling around in a fat bag.

Ha!

Ha!

I want to vomit. I notice a girl in the center row snapping a rubber band on her wrist. Somehow I know someone hurt her once. She doesn’t laugh; she looks like a picture of herself.

I ask the boy to step outside, and I realize I now think of him as predator in a way that does not make me proud. I am asking myself questions on the journey to the door—how do I raise a boy? I think of what to say to him, what a woman should say to a boy who looks like a man, who says he wants to rape women. He smirks.

I thought it was funny, he says.

I have nightmares about him that night. He follows me to my car after school, like some kind of starving thing. (Was he panting? I think he was panting.) He brings his friends. (Are they panting?) So hungry, all of them. He takes me by the hand, rubs it like I am his, and forces me into the car, a dark place, a deep wound, and it is done. I wake up.

After I speak with the boy by the classroom door, after I tell him the danger of what he said in class, he walks back to his seat, avoiding my eyes. To everyone, almost everyone, he is a hero, the big man. Later, I go to tell the guidance counselor what happened. I feel like a child, knocking on her door, demanding something be done, trying, in my head, to rename the boy yet again, something more innocent. He is, in fact, a boy.

The guidance counselor is on her way out, so she only half-listens. She tells me he probably just learned the phrase from his brothers and that I need to remember boys will be boys.

The guidance counselor and I do not speak about the incident again. All I think about for hours is the space in which I inhabit as a teacher, a supposed authority even while being so young, with the opportunity to be an example, to be an adult woman in a classroom of children, awkward, unsure of what to do with their own bodies, how to be, who to be. I am an adult woman, no? No, not an adult woman. No, I am an adult woman. I often have trouble understanding what certain words mean.

Woman [noun]:

An adult female human;

a female servant or subordinate;

a wife;

a female lover or sweetheart.

 

III.

There is a boy who points guns; at first, only at the door; then, at the other boys in the class, the boys who call him names. He hates to be called names. I watch him the way a cat watches for a quick mouse to move out of a hole. I watch him shape a gun with his hand: three fingers curled under like dehydrated leaves, the other two in the shape of an “L,” angled upward and, then, straight, accusatory. “L” for lousy, loser, lost.

There is a group of male students in the class who call the boy dog—animal, panter of breath, servant to bring what is fetched, you are a dirty dog, you—and he answers to the name sometimes, as if his name is whatever they call him. The boys who use the name have all been given detention, and now they let the words spill more quietly than before, more like slick oil.

Dog, as they call him, talks a lot about bitcoin mining and playing the violin. He walks with a bowl-like hunch, runs instead of walks actually, in a hurry, running from them, the others, the other boys, swirling the air with his body, counting his steps down the hallway. If he goes any slower than this, they will notice; they will know he is not their kind of man.

I often hear the boy whisper under his breath, much like I hear other boys whisper under their breaths—middle school is the space for whispering breaths.

One day, I will get you, he says, quietly, pointing the gun in the direction of the other boys. I wonder what he is thinking, what he must be thinking, something like Don’t, don’t, don’t hurt me.

The boy doesn’t know I listen. He doesn’t know I see the gun. Fake, made of his tiny hands, but a gun; he doesn’t know I see him pulling the imaginary trigger. I watch him holding it underneath his desk; it looks like he’s hiding a pet snake from home. I want to say to him, This is how they want you to react.

I have trouble saying and not saying.

I tell the boy’s mother about the invisible gun he holds with his fingers. She is worried. Her son translates her high-pitched, lyric-sounding, concerned Chinese, and tells me that recently the boy and his family were driving in their car at a time when traffic was building up. Someone behind their car opened his door out of frustration, yelled a name at them (which one? I don’t ask), and pretended to shoot an imaginary gun in their direction.

Their son must’ve picked up the habit, violence the mouth of bad language.

A boy who knows the touch of a gun is, indeed, a man.

Right?

Right?

A boy who points the right objects is, indeed, a man, right?

Object [noun]

Anything that is visible or tangible and is relatively stable in form;

anything that may be apprehended intellectually.

 

IV.

The boy carries it over to her, like carrying a baby bird that has fallen out of a nest. I assume he said something like, here, touch it. The girl is older than other girls in her grade; she has already been held back several times. Just touch it.

A group of students has snuck away to an isolated back room in the corner of the band auditorium. Their usual teacher is sick, and there is a substitute today. I hear about the incident in the teacher’s lounge, where stories are told, stopped, and moved forward, again. Told, again and again.

Everyone in the auditorium is watching a movie, so no one notices when a group of students brings the mature-figured girl into the back room, her voluptuous breasts her consent.

The girl touches it because it is already touching her. She physically cannot back away, the musical instruments digging craters into her back. Afterward, the girl tells the substitute, the substitute who never noticed the students were gone in the first place. But what is done is already done.

Now the girl is walking down the hallway, and the other girls know.

            Now the boy is walking down the hallway, and the other boys know.

I am not the boy’s teacher; I only see him in the hallways. But sometimes, it feels like you are teaching all of them, always.

Because the boy has a learning disability, his expulsion is handled differently. The principal gathers his teachers in her office to decide if what he did to the girl is related to his learning disability, if he lured a girl into a dark room to touch all the things that make him masculine because of something he was born with or because of something he was taught.

Girl [noun]:

A female child from birth to adulthood;

daughter;

a young unmarried woman;

a single or married woman of any age;

sweetheart;

a female servant or employee.

 

It is debate day. Students move to one or the other side of the classroom to signal whether they agree or disagree with a statement I write on the board. Today, we are talking about gender in the media.

On the board, I write, A woman could be the president of the United States.

Agree or Disagree?

Almost unanimously, both boys and girls disagree with the statement.

One girl wants to explain her opinion. I am happy; she rarely talks, but I often like her words, how she speaks with exclamation. No, I don’t think a woman could be president. Think about it. What if a woman had to stop in the middle of her speech to feed her children? What if she’s on her period? She would be so moody, she says.

The class roars.

Ha!

Ha!

As a teacher of middle school students, I am told I should not share certain opinions with them. I stand in front of these boys and girls, terrified for them, and I feel I can say nothing but, Be careful with your language.

Language [noun]:

The system of words or signs that people use to express thoughts and feelings to each other;

any one of the systems of human language that are used and understood by a particular group of people;

words of a particular kind.

 

VI.

Be manly. Be more masculine. Be aggressive. Be dominant. Be distant. Be lustful. Be large. Be chivalrous. Be a protector. Be a provider. Be a warrior. Be tough. Be hard. Be the breadwinner. Be cold. Be macho. Be a gentleman. Be expendable. Be physical. Be hetero. Be sexual.

Be womanly. Be more feminine. Be gentle. Be inferior. Be the second-in-command. Be sensitive. Be prudish. Be soft. Be small. Be submissive. Be a prisoner. Be fragile. Be loose. Be a servant. Be warm. Be pretty. Be silent. Be a baby. Be thin. Be curvy. Be expendable. Be physical. Be hetero. Be sexual.

Be [verb]:

To have an objective existence, or to have reality or actuality;

to have, maintain, or occupy a place, situation, or position;

to remain unmolested, undisturbed, or uninterrupted;

to take place or occur.

 

VII.

As soon as the boys across the street look in our direction, I think of mothers. Their mothers: who are they? Their fathers: who are they? Their teachers: who are they? Where does one begin to raise a person? Where does it end?

The group of boys is running across the street now. They could be my students; they are young like them, male like them. The boys could be my students.

We are walking. There are three of us: two men and myself. It’s late, dark as a locked room.

The boys, now in the middle of the street, yell a slur in our direction. Faggots, they say. Faggots.

Ha!

Ha!

There are three boys in their group, a herd. They charge us. My friends and I look forward. We look forward, we look forward, we look forward. They’re closer to us now; no, they’re on top of us. No, they’re all over us. They pull, pull, pull. They are ripping clothes, hitting and hitting and hitting—I am a woman in the center of a group of boys. Men? I am pulled away by one of my friends. It feels like a dream, hazy, like war.

I think of my students, of something to say, to do. The girls, when they’re my age. The boys, when they’re their age.

            How do you raise a group? What words, what words, what words?

Men!

Men!

Men!

The police come after I call them, and the men who attacked us are arrested, their faces pressed like dough into the gravel, making permanent indents, I’m sure, into their skin.

Man [noun]:

An adult male person, as distinguished from a boy or a woman;

a member of the species Homo sapiens or all the members of this species collectively, without regard to sex;

prehistoric man;

the human individual as representing the species, without reference to sex;

the human race or humankind;

a human being or person.

 

VIII.

Where did they put the babies?

We are standing in the center of the hallway. I’m on lunch duty, told to rein them in, rein them all in, keep the kids in their right places. One of the assistant principals asks, Where did they put the babies? I know, after learning these words, after listening closely, that he means the students who are mentally challenged, as this is the word commonly used for them by teachers and others. Boys and girls, boys and girls. Regular boys and girls.

Where did they put the babies? I imagine him searching for them, the babies. He will look only in discreet places—dumpsters, garbage cans, places where people put babies when they don’t want them, when they are afraid to raise them.

I look for them, the babies, and I find them eating lunch in a resource room with a teacher, away from everyone else. I find out they watched movies all day, and some days, that’s all they do.

I leave the room and feel strange, the way I feel when I leave my house in the morning, forgetful, wondering, Did I turn all the lights off? Did I leave the coffee pot on? But also if I could be the type of person who might call certain students babies, making it so they will have to answer to it. Baby—sit. Baby—proof. Baby—doll. Baby—blue.

How do we raise the babies?

Baby [noun]:

A very young child;

a very young animal;

the youngest member of a group.

 

It is spring, the end of the school year. I plant a garden with my students. I love the idea of raising things. But I do not know how to grow plants, how much soil to use, where to put what, how to make roses into roses. My students and I decide to try it anyway, to raise something. I am proud of them—I feel as close as I have ever felt to being a mother.

We spend weeks tilling the soil, swatting bees, and placing flowers into the holes we dig for them. The flowers fit perfectly. And so they stay there, rooting their roots, letting weeds grow around them, re-blooming. Everything grows, and we—the students, the teacher, the people surrounding the garden—have almost no control over it. No, not really, but yes, a little.

Person [noun]:

A human being, whether an adult or child;

a human being as distinguished from an animal or a thing;

an individual human being, especially with reference to his or her social relationships and behavioral patterns as conditioned by the culture.

 

X.

I stare, now, at the faces of students who are mostly freshmen in college. I am their teacher, no longer teaching middle school, but teaching an older age, in a new place. I feel renewed as my students ask me questions like, How would you like us to write? What words do we use? Are we doing this right? What do you suggest? I want to tell them, This way, and, No, you’re not doing this right, and, I really suggest you start over. But, all of a sudden, it doesn’t feel so simple; it feels like maybe the hardest thing I have ever done, like the place where soil ends, like rock. I think of the students I once taught, the young ones. I am suddenly craving, deeply, to know where they are, if they ever think of me, if they ever noticed I was their teacher. Or if they knew I cared for them, too much, not enough. Was it too much? Was it not enough? I wonder, in such a moment, if all of them are even still alive.

You, group—as in powerful, young like fresh breath—how am I supposed to have raised you? How am I supposed to raise a person?

Sara Hendery is from North Carolina but currently resides in Chicago. She is an assistant editor for Hotel Amerika literary magazine and is earning her MFA at Columbia College Chicago.

This essay is excerpted from Creative Nonfiction #60 / Summer 2016 / Childhood

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Ground-Level Memories

Ground-Level Memories

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By Jennifer Fliss

ground-level

When I ran a search for “parents with disabilities,” all that came back were articles and experiences on raising a child with disabilities. Scores and scores and scores and probably not nearly enough if you are the parent of a child with special needs. But still, it was not what I was looking for.

I am a full-able-bodied new mother. However, my own mother, who lives nearby and wants to play a visible role in her granddaughter’s life, is not. She is 62 and walks, not very well, with a walker. What started as a limp when she was young has degenerated to an almost lack of mobility in her legs. As a child, I was bullied and only one of the frequent taunting refrains was about my mother being a “cripple.” As if that made her less of a person. As if that made me, her child, less of a person.

It is true that it has made things difficult. For years I’ve had to help her with stairs, walk her to the bathroom, provide the sturdy arm that I always thought should be the parents’ responsibility to their children. It is something I struggle with. Often. But it is also something I’ve had to just get over. Be okay with. Not easy.

When I moved from New York to Seattle, my mother followed. When I had a baby, naturally she wanted to spend time with her grandchild. Isn’t that what so many grandparents want? But how would this work? What would she do? There would be no bouncing on the knee, no pushing in swings (as I remember my mother doing for me, while singing Elvis songs), no walks to the duck pond (as I had done with my beloved grandmother), and later, no bowling or trips to amusement parks.

Of course, going through my mind were frustrations when people would say “Oh, it must be so nice to have help nearby.” The thing is, I couldn’t trust my mother to hold my daughter. In her thin and shaking arms, I was sure she would drop her. I certainly couldn’t get a breather while grandma watched over a sleeping or crying newborn. When out of my mind caring for my colicky girl, I desperately needed the help I thought a mother should provide. But, I couldn’t get it. Yes, she wanted to help. She bought us a stroller, a car seat, and myriad other baby items. But I wanted more than that. I wanted what money could not buy. I wanted someone who would hold me and tell me I was doing a great job and here, why don’t I watch her and you get a break, some sleep Sweetheart. But those fantasies never came to fruition. If my mother came to my house, I had to watch over my baby and my mother. And in that selfish time, I just couldn’t.

So, that led me to my Google search. There had to be parents or grandparents with disabilities and challenges like my mother’s. What did they do? How did they do? Surely there was some kind of online support network with resources. Here is a little game Grandma can play with an eight month old. Look at this new gadget that makes it easier to hold a baby for someone with such little body strength. Read this story on this fantastic parent and her experiences and how wonderful her children turned out. Nothing. The digital version of crickets.

What do I do then? I still struggle selfishly, but as a parent, my selfishness must be put aside for the benefit of my daughter. So, I do what I can to foster their relationship. I bring my now thirteen month old daughter to Grandma’s apartment. I set her on the ground, at the same level as her grandmother. And they laugh together. I’m never very far away. If I’m lucky I can sit up on the couch, check my email, read a book. We have gotten a wheelchair for my mother that allows us to go on walks with her. Baby in a carrier or baby backpack, or if my husband is with us, in a stroller and granddaughter and grandma tour the park next to each other, laughing at the ducks or pointing out the resident elusive heron.

I am never going to have a fully-physically able-bodied mother. It is still going to bother me sometimes; the unfairness of it. But I’m also an adult, one that, I think, turned out pretty well, despite my mother’s declining difficulties. Maybe it’s helped me learn compassion. Maybe I understand that others have situations that are worse. I have a mother. And she lives just up the street, less than a mile away. And walking doesn’t mean loving and holding doesn’t mean laughing. She cannot walk. She cannot hold her granddaughter. But she can love and she can laugh and together, they’ll make wonderful ground-level memories.

Jennifer Fliss is a Seattle-based new mother, writer, reader, runner, and has been known to do the flying trapeze. She has written for book blogs, including The Well Read Fish and BookerMarks and other publications.

Photo by Scott Boruchov

Top Ten Books for Parenting Children With Disabilities

Top Ten Books for Parenting Children With Disabilities

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Special Needs Art !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

 

The Age of Sudden Awareness

The Age of Sudden Awareness

Posted on by • Posted in Articles Page, From The Archives • Tagged , , , , , • 1 Comment

By Marla Kiley

kileyart-1“Grab my other hand,” I say to my five-year-old son, Dillon. He walks to my left side and reaches up higher than normal to reach my short left arm. With my free hand I reach out for my three-year-old, Dane, and we safely navigate the three lanes of traffic to get to the neighborhood library.

As we reach the sidewalk, I catch our reflection in the building’s glass. We look crooked, as if I’m leaning over to say something.

“When will he notice?” I silently wonder. Dillon pulls away and skips ahead to push the automatic door button. So far he has not said anything about my being different from anyone else. It has been my experience that four-year-olds notice. I was expecting Dillon’s observations to begin around that age but, so far, nothing. Dane is at least a year away from seeing anything beyond the end of his nose and, if he’s anything like Dillon, it might be longer.

They have not noticed that I was born without an elbow in my left arm. I have no exciting, or at least interesting, story to add to that fact, which is a shame. The doctors call it a random birth defect, without further explanation. My arm is shaped something like a long banana, half the size of my other arm, with a normal but slightly smaller hand at the end. It’s an unusual deformity in that most people I encounter don’t even notice my arm until I have been around them for an extended period.

Maybe I am just unaware and more people notice than I realize. Perhaps most people are just very polite and discreet in their glances. However, I tend to think my arm is not noticeable because I, for the most part, am completely forgetful of it.

I’m not at all worried about my kids seeing that I look asymmetrical when I reach out my arms for them. All kids seem to go through the textbook phase of being embarrassed by their parents; at least my kids will have a particular feature to be distressed about instead of feeling a generalized horror. Yet, I do wonder how the awareness will manifest itself.

When my niece turned four, she became almost overly fascinated with my arm’s being different. For months, every time I saw her she ran to my left side and said, “There’s your little arm,” almost to reassure herself that it was still there and the whole thing hadn’t been some bizarre fever dream.

Another little girl whom I had seen daily for years (and yes, the girls do seem to notice and comment more than the boys do) suddenly noticed the difference in my arms. She sucked in her breath and cried, “What’s that!?”

I had to explain that my arm had always been this way and that it didn’t hurt—they always ask if it hurts—and that the only difference was that she finally noticed. After accepting all this information and asking countless more questions, she finally resigned herself to the fact that the arm was staying and said, “Poor little arm.” Which she repeated to me day after day after day until she became bored with it.

Only as an adult and only very recently have I had to deal with this strange phenomenon of my arm being the focal point of conversation. When I had infants and toddlers, I was around parents of infants and toddlers, and my arm was a non-issue. It conveniently curled around little ones. But because I now have a three- and a five-year-old, my world is full of three- and five-year-olds in what I call “The Age of Sudden Awareness.” Nowadays, nearly every time I’m around children of this age, a small child will end up pointing her finger, dropping her jaw, and saying, in a flabbergasted rush of air: “What happened to your arm?” followed quickly by, “Does it hurt?”

It surprises me every single time. Occasionally, the comments will fluster me if I am jolted from mentally preparing dinner or something similar, and I stammer for a second while I try to connect the child’s words with an acceptable response. Contrary to what most people think, though, the eruptions startle me, but they never bother me.

It does bother the parents of these children, some of whom are good friends. They fall over themselves trying to distract, reprimand, or apologize for the child. No matter what I say to the flushed parent, it seems to only make it worse for everyone. I understand their embarrassment. I have been in their shoes many times.

Once, after Dillon had pointed out someone who was in a wheelchair very loudly and very rudely, I took him aside and said, “Some people are different. Mommy has a shorter arm. That woman was in a wheelchair. Some people look different than others on the outside, but we are all the same on the inside. Next time you see someone who is different on the outside, wait until we are alone in the car to talk about what you saw so we don’t hurt their feelings.”

I did get him to agree to wait and not yell out his thoughts, but he seemed deaf to my comment about my arm. Shortly after that, we were in a bookstore when a man on crutches who was missing a leg passed by us. Dillon shouted, “Mom, look at that man! I want to talk about him in the car!”

I wish I could tell that story to the parents whose kids approach me. Sometimes I can, but most of the time it would just make them feel worse. I like that kids question what the rest of us see as obvious. I wouldn’t change their honest appraisal of life even if I could.

As a result of my experiences, I have had well-meaning parents solicit my advice on how to teach their children about people with disabilities. Although I always try to say something wise, I’m just being a poseur. I have no idea.

I have had many “sensitivity” talks with Dillon, and just when I think we are over this stage of pointing and staring, he pulls a doozy. Recently I heard him say to a new mother, “Your baby is so cute.” Then he ruthlessly added, “But its face is all ugly.”

Being an adult in this world of The Age of Sudden (and Vocal) Awareness has brought an interesting shift in my life. I have very few childhood memories of anyone talking about my arm, although they must have. My mother wrote in my baby book that when I was asked about my arm, I would matter-of-factly announce, “I was born with it,” in a tone that did not invite further comment.

A few years ago, a mother I know surprised me by anxiously asking if I had been teased at school. I think she was preparing herself for what her daughter, who has a very noticeable physical difference, might experience some day.

My mother and I happened to be together when this concerned woman put forth her question. Before I could respond, my mother flatly said, “I don’t think they would have dared.” Although we probably confused this poor woman more than we assuaged her fears, I knew exactly what my mom meant. Words have always come quickly to me, and sharp, biting words have flowed even more smoothly.

I have argued that my biting words and dry sense of humor may have developed as a defensive mechanism, but my mother assures me that I was delivering caustic quips as soon as I could talk, long before a defense was necessary. The truth was, I never needed to use this “talent” in a defensive way.

I know I am expected to have horrible recollections of being tormented by other children for being different, but I never was. I always had friends and boyfriends, and I was—if I am to cast off all modesty—very popular.

I do recall one ugly event at a football game in high school. My boyfriend informed me that his friend thought I looked like a seal when I clapped. The comment gave me a sharp stab of pain and a sudden desire to break it off with this guy whom I had been crazy about. I was so vain that the comment did not hurt my self-esteem. Strangely, it did make me hate him for noticing that I did look like a seal when I clapped.

I waited a week to break up so that he couldn’t connect the two events. The isolated comment stuck with me, and I mentally prepared several snappy comebacks in case anything like that happened again. But before long, the cruelest of all beings—human teenagers—voted me the homecoming princess. It was hard to hold onto one “seal” comment after having that sparkling crown placed on my head and my flipper filled with roses.

In those days, I was self-conscious of the way I looked, like most teenagers. I felt my worst feature was what I believed to be an enormously poochy stomach. I was five foot eight and one hundred ten pounds. I doubt I had a pooch anywhere except in my eyeballs when they strained to see my stomach. My arm didn’t even make the list of top ten things I thought was wrong with me.

For this, I give my parents all the credit. I was never treated differently from my seven siblings. I did the same chores as everyone else. It might have helped that, with such a large family, my parents didn’t have the time or energy to treat me delicately. I grew up sturdy. I am sure that that led to my ability to forget about my arm and project that same attitude to those around me.

Yet today the four-year-old detectives in my life have bypassed my nice, neat barrier of silence on the subject. Although I could happily have gone my whole life without hearing the “seal” comment, it may have broken me in for what I would hear twenty years later out of the mouths of preschoolers—my favorite being, “That is soooo gross.”

Still, it’s one thing to have other people’s children go into shock over my arm, but another thing altogether to have one of my own children suddenly see me differently. That might affect me. To circumvent this confrontation, I have tried to talk to the kids about my arm, holding it up for display. I swear they cannot see it. I have yet to elicit one word on the subject from either of them, so I have had to let it rest. When they do notice, I’m sure I’ll be the first to know.

Of course, I could be looking at the whole situation completely wrong. I suppose that because I’m their mother, I am how all mothers should look, in their eyes. Who knows, perhaps my children won’t ever notice my arm. Perhaps they’ll wait until we’re in the car and then quietly ask me why so-and-so’s mother has two long arms that look exactly the same.

Author’s Note: After writing this essay, my memory began to kick in about other times in my life that my arm seemed to play a pivotal role. I have had two employers tell me that they were reluctant to hire me because of my “disability.” They shared this with me only years later, after I’d become an insider. I guess that, before, I was an outsider and they had to watch to make sure I wouldn’t file a disability claim or demand special equipment to do my work. Even with these memories, and others that are gently waking, I have a hard time sitting in the victim’s chair. It has never been a comfortable fit. I hope I can pass this attitude on to my children. I don’t think that words can do it—I guess it has to be modeled. Wish me luck! 

Marla Kiley lives and writes in Denver, Colorado. She has worked as the features editor for a local newspaper and a senior writer for a dot com. Her essays can be seen in the Cup of Comfort anthologies or magazines such as Colorado Homes & Lifestyles, The Writer, and Old House Journal.

Brain, Child (Summer 2004)

Illustration by Oliver Weiss

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Mothering Through Two Brain Surgeries

Mothering Through Two Brain Surgeries

Posted on by • Posted in Articles Page, Highlights • Tagged , , , , , • 2 Comments

By Maria Richmond

Brain Tumor ArtThe symptoms snuck up on me—slowly, steadily. A numbness that started in my arm, and eventually reached my legs, then turned into full body numbness in bed each night. One minute I felt fine and the next, I felt like I was trapped in a stranger’s body. I didn’t recognize myself anymore.

I was living a good life in Orlando, Florida with my husband and two beautiful boys; Alex and Caden, then, ages 3 and 5. There were always things to do in Orlando; theme parks, lakes, beaches, and playgrounds. I spent every day playing with my boys, going on fun excursions and adventures.

Until my symptoms grew worse.

“Are you okay, Mommy?” they’d ask, when they’d see me holding my head or grabbing onto the back of a chair for balance. “What’s wrong?”

“I’m ok, guys,” I’d tell them.  “Just a little tired.” But I wasn’t tired. Something else was going on. I knew it.

***

A month after the symptoms started I found a neurologist.  Dr. Arning didn’t know why I was going numb, getting dizzy, or having bouts of mental confusion. He sent me for an MRI. The morning of the MRI Alex and Caden sat with me in the quiet waiting room. “Bye, Mommy,” they said as I followed the technician.

When it was over, the technician told me the doctor would call if he saw anything. My thoughts shuffled: Saw anything? Oh no, do I have cancer? What will happen to my boys?

Dr. Arning called the next day. “You have a brain cyst,” he said. “come into my office in the morning” In his office Dr. Arning explained something called a Cisterna Magna —a Posterior Fossa Arachnoid Cyst. “These things are normally asymptomatic and don’t cause problems,” he said.  Ok, I thought, a cyst is not a tumor, but it was a brain cyst, and from what he described, a very large one at that. And I was already having symptoms, plenty of them, so I was not asymptomatic. All I could think about as I left the office was what would I tell my boys?

At home, Alex and Caden sat playing Legos on the living room floor. “What’s wrong Mommy?  Are you ok?” Alex asked.

“I’m OK,” I said. “I just have kind of a boo-boo in my head.”

***

Over the weeks, my symptoms grew worse. “Can we go to the park today?” my boys would ask. But by now, even a short trip to the park was too much and I didn’t feel comfortable driving, especially with my boys in the car. So more often than not, I’d say, “Sorry, guys, we’ll go soon but not today.” I felt terrible always saying no. Terrible.

Over the following weeks, I searched for another doctor, who specialized in brain cysts. I found one who immediately told me I would need brain surgery. I thought only of my husband and boys, a deep pit in my stomach, what if I don’t survive?

The night before surgery, Alex and Caden stood next to me in my bedroom as I packed, “We have something for you,” Alex told me. He handed me a small black notebook and turned to a page to show me his handwritten note: “Don’t worry, Mom.  God is with you.” I buckled under his tenderness, marveled at how grown up he was, and so calm. The boys didn’t seem worried. I told myself if they weren’t nervous why should I be? But I didn’t want this to be the last time I saw them.

***

After I woke up from surgery, as soon as I was able to, I called Alex and Caden. They bombarded me with questions; “Are you OK now, Mom?” they asked. “When are you coming home?” “Did it hurt?” They wore me out but it felt good to be answering them—because I could. Because I was still here.

When I got home from the hospital a week later the boys greeted me as I walked in the front door.  “Did it hurt?” Alex asked. “Can we see where they did the surgery?” I showed them the scar, “I’m OK now,” I said hugging them, reassuring them.

“Can we go back to the park again now?” Caden asked.

“Yep,” I said.  “Soon, we’ll be going all kinds of places. My brain just has to heal a little.”

***

Things went well for a while.  I gradually gained strength, and ventured out more and more. But about four months later, the headaches, numbness and mental confusion returned. I was back to being homebound. I saw the look of disappointment on Alex’s face—I could hear his thoughts, I thought your surgery was supposed to make you all better.  I was no longer better.

I had a second surgery to get a shunt put in my head — directly into my cyst. It would help keep the fluid draining and the cyst from building pressure. At least we hoped. I was gone again for a week.

As I recovered at home from this second surgery I tried to balance motherhood with umpteen doctor visits, and countless days of not feeling well. I was unable to be the kind of mom I had hoped and planned on being. It was taking a long time to get back into “mommyhood.” Things were now officially beyond difficult.

Often I was too sick to tuck Alex and Caden in. I’d have to say goodnight from my bedroom across the hall. Guilt settled in. I felt like less of a mother when my boys called from their beds, “Goodnight, Mommy. We love you.” I’d sink into the sheets and make wishes for myself and for the kids. I wished for my life back. I wished to be better.

But the shunt wasn’t relieving the pressure, so sometimes Alex and Caden would ask “Why are you crying, Mom?” Caden sometimes thought he had done something wrong, and he’d apologize, “I’m sorry Mommy,” he’d say.  “I didn’t mean to.”

“You’ve done nothing wrong honey,” I would reassure him.  “Mommy is just sick.”

I spent my days at a new doctor’s office. This new doctor didn’t know why the shunt hadn’t worked, and he didn’t seem to want to figure it out. His treatment was to turn my shunt down at each visit so more fluid would drain out and relieve the pressure. But this approach did not work.

***

When I said goodbye to my boys again, they were scared. “When are you coming back?” Alex asked. I knew I didn’t look good, my speech was slurred, and this time we had no idea how long I’d be gone. “Can we come with you?” Caden asked. My husband and I made the 8-hour trip back to the hospital where I’d had my surgeries.

As I lay in my hospital bed again, I worried my boys would forget the kind of mom I had been—that I used to be. I was sure when they grew up all they’d remember about their childhood was how I was sick all the time. They’d no longer remember going to the park, to Disney and Sea World, and all the fun things we did. Instead, their memories would be of being lugged to constant doctor appointments, waiting in the sterile hospital, and watching me recover from surgeries. I didn’t want them to have only those memories. I wanted them to have good memories of us as a family —fun times. But those dreams and thoughts were getting doused more every day. “I’m sorry,” I told my boys in my mind. “I’m sorry I’m always sick now.”

During this hospital stay the doctors determined that the shunt had been over-draining for many months. Too much Cerebral Spinal Fluid had been pulled off my brain and had essentially, let my brain dry-up.

Yes, my brain was drying up, to the point where it was no longer floating – a condition known as sagging brain, and my sagging brain had then caused my brain stem to fall into my spine. I needed more fluid back around my brain before it went into shutdown mode. The doctor turned the shunt pressure back up to allow more fluid to collect around my brain. This would put me out of the “danger zone.” Hopefully.

But there were no guarantees that my brain would ever float back to its normal position, or that this would get rid of all of my symptoms.

This had been, by far, the most frightening and devastating of all the hospitalizations, but I went home a few days later, and once again, there was the big homecoming.

“Are you better now?” The boys asked when we pulled in the driveway.

“I sure hope so,” I told them. “I’m planning on it!”

Months would pass before I’d feel even a little better. And although I was able to eventually be a mom again, I was not the mom I had hoped I’d return to; I was a long way from being the mom I had been years before, before my brain cyst. I would have to search for a long time to find some new normal that my boys would remember, with some joy.

Author’s Note: Alex and Caden are 14 and 12 now. Although there are times I feel like I have missed chunks of my boys’ lives while they’ve been growing up, I remind myself to be grateful for having the privilege of being here.

Maria McCutchen Richmond lives in North Carolina with her two boys. She has been writing for many years; and for the past three years, she has been freelancing and writing articles for the web. She is an activist for those with brain cysts, speaking out and trying to help others by starting a following for arachnoid cysts on EmpowHer.com, starting a blog on www.arachnoidcystsupport.blogspot.com, writing articles about the condition, and educating others about this rare brain disorder.

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