Opinion: No Services

Opinion: No Services

portrait of a sad little boy in red soccer jersey seated on a bench and holding a ball

By Jenna Bagnini

What do you do when your child isn’t disabled enough to qualify for services, but isn’t typical either?

My eleven-year-old son can’t brush his own teeth. He chews on the brush and he doesn’t know how to spit, no matter how many times I’ve tried to show him. So at some point I gave up, took the toothbrush from his hand, and started brushing his teeth for him every day. He walks around with his shoes untied all day, not because he can’t tie them, but because it’s hard for him and he doesn’t want to expend the effort. He can’t ride a bike. He refuses to go to the movies, because it’s too loud and the sensory piece is overwhelming. He can’t prepare himself a sandwich. He can swim, but he won’t put his head in the water. Yet this same child doesn’t have an Individual Education Plan (IEP) or even a 504 plan to arrange some special help during the day. Despite his high-functioning autism and ADHD, he’s “not disabled enough” to need services at school.

My son used to have an IEP. He got speech and OT and a social skills group. We moved at the start of this school year, and he was immediately declassified. The new district decided that he no longer needed the assistance. And he is a bright child. He gets good grades. But his behavior is not that of a typical eleven-year-old boy. I believe, even though he is getting some counseling as a building-level service, that his behavior at home is suffering because he is not getting the help he needs at school

Though my son has good grades, if you look in his backpack you will see that it’s a complete disaster. He has an accordion folder for all his subjects, but he just shoves things in and then can’t find them. When I need to send something to school with him to hand to a teacher, I’m pretty sure it isn’t ever going to make its way to the intended destination. And he has a very hard time keeping track of his homework. It’s fortunate for him that he has an incredible memory so he does very well on tests without needing to study for them, because he is constantly forgetting when they are scheduled.

We are restarting the process of evaluating my son and I plan on bringing the paperwork from the neuropsychologist to the school to try again for school-based services. Unfortunately, we are unable to afford private OT, so I am hoping that the school will read over the neuropsych’s report carefully and make a decision that is in the best interest of my child. But I am not entirely optimistic, because he simply doesn’t look “disabled enough” to qualify.

The problem with having a child like mine is that he holds it together so well at school that they don’t see the concerning behaviors (meltdowns, crying fits, refusal to leave the house), and we don’t benefit from any of the interventions that other kids with autism could get. I am constantly hearing that “he is able to access the curriculum.” Yes, he is, but that should not be the end of the story. Grades do not make the whole child. He needs to have social skills and he needs to stop the behaviors, such as picking his nose, that make him distasteful to the other kids. I hear stories from him about being picked on and teased, and I’m afraid it will only get worse as he gets older.

I think it behooves the school to redefine what “able to function in the classroom” means. Are we really doing the best for our children without testing their social skills as well as their ability to regurgitate the facts. If our ultimate goal is to raise productive adults, we have to do better for our fringe kids.

Jenna Bagnini is a divorced mom of three boys (one with special needs), feminist, mental health advocate, yogi, and dancer.





A View From The Special Needs Trenches

A View From The Special Needs Trenches

Waves crashing up to the sand beach

By Lisa MacColl

I am the parent to a child with a variety of invisible neuro-developmental, cognitive and behavioural challenges. She has permanent, irreparable brain damage as a result of her birth mother’s use of alcohol and drugs during pregnancy. It is what it is and we deal with it, some days better than others, some days not at all, but we do it, and we get up the next morning and do it all again. Here’s a glimpse of life in our trenches.

Self-Care is a Dream

If one more well-meaning millennial counselor reminds me of the importance of self-care, I may throat punch someone. I know they are coming from a place of genuine concern, because there is a middle aged, frumpy, tired woman sobbing in a chair in the office. I know that I have to take care of myself because when the ringmaster falls, the whole circus falls too.

But here’s the thing. Wanting to do it and having the ability to do it are very different animals. Self-care, especially when it involves things like actually leaving the house for a period of time to do something just for me takes time, planning, energy and money. I can’t just leave my daughter by herself and go for a walk. She may be a tween chronologically, but mentally, cognitively and neuro-developmentally, she’s closer to six or seven. Would you leave a six year old child to fend her herself at home? Neither will I.

We can’t just ask the neighbour’s kid to babysit. We need a babysitter who understands and can handle our daughter’s challenges. That limits us to one babysitter, and we pay well. That also means we limit the use of a babysitter to very special occasions.

The rest of the time, taking time for myself translates to a couple of games of Candy Crush or drinking my coffee while it’s still hot. I used to read voraciously, but now I read for pleasure at bed time. The rest of the time, I’m reading for work or to learn more about my daughter’s challenges so I can be a better parent.

I Doubt Myself

I see you over there, Mrs. Judgey McJudger, with your disapproving stare and your pursed lips. You’re watching the meltdown in progress and you’re thinking that it’s over-indulgence, or poor parenting. I heard you too, Mr. Smugpants with your Stepford wife and your perfect McChildren. I heard your muttered comment about the need for a good smack. I was strong-arming my child out of the store in the middle of a meltdown that day, or I would have obliged you and smacked you upside your head as requested.

When there is no ability to process action-consequence, all the sticker charts in the world will not solve it. When there is no ability to control impulses, no amount of withdrawal of privileges will change the see-want-take. When there is no ability to extrapolate from one situation to the next, every day is groundhog day, and just because my child understood something three days ago does not guarantee she will understand it now. I have to remind her every day to wear socks, to brush her teeth, and tell her what to put in her backpack every single day.

So I doubt myself. I don’t need help on the self-doubt front, so you can just keep your opinions and snark to yourself. You can’t possibly make me feel worse, and seriously you have no idea what we go through in a day, or even in a morning.

I Worry

I worry what will happen to my daughter when we’re gone. I worry who will take care of me when I’m old, because my daughter won’t be able to care for me like I cared for my mother and I’m an only child. I worry that she wants to take a babysitting course, and I know no one in the neighbourhood will hire her because she’s been ostracized. I worry that she wants to go to the mall with her friends unsupervised and with her lack of impulse control it could be a shoplift waiting to happen. I worry that her “friends” would set her up because she just wants to be liked. I worry that she knows she’s different and she gets upset about it. I worry that the kids at school pick on her because she’s different and there’s not a damn thing I can do about it because she has to go to school because homeschool is not an option, because then we won’t have a home to homeschool in. I worry that one day she’ll figure out she can get on a bus, and then she won’t know how to get home and we won’t know where she is. I worry that she’ll want to take driver training when she’s sixteen, and what if she doesn’t pass, or God forbid, what if she does. I worry about teachers who don’t understand her, classmates who are mean, parents of those classmates who are misinformed and make decisions without proper information. I worry that some days I don’t think I can do this parenting thing and I still get up and do it again. I worry about finances, because all those extra therapy sessions and summer camps are expensive and I can’t do my day job if my kid is home from school yet again. I worry.

My Normal isn’t Normal

I live vicariously through other people’s trips with their families. Trips to tropical destinations or Disney, smiling, happy children playing in the sand on the beach, I smile and say all the appropriate things, while I’m crying inside. How could we take a plane because what if a meltdown happens while we’re flying at altitude and there’s no where to go. And if we did manage to get there, would it end up like every other time we’ve gone to an amusement park and the sound and people overwhelm her and we have epic meltdown? I don’t know if it will ever happen, this happy family vacation thing, and it makes me sad.

Our normal is trying to block kicks, punches and flying objects in the middle of a meltdown. Our normal is reassuring the neighbors we aren’t murdering our child just because she’s screaming “don’t touch me,” even though we aren’t within 20 feet of her, or even on the same floor. Our normal is pushing our very tall tween in a shopping cart because that’s what it takes to get groceries done quickly, and spending a fortune on sushi and crab because she will actually eat that right now, and at least it’s protein, which is better than the packs of dried seaweed she was eating before that. Our normal is packing four spoons in her lunch every day because she can’t use the same spoon for different things. Our normal is watching sugary intake like a hawk because artificial dyes, especially red or blue will send my child into orbit for hours because she was born addicted to sugar, and there’s no such thing as “just this once.” Our normal is watching the same show 100 times because she has OCD and is perseverating. Our normal is trying to explain confabulation to someone with no experience, and reassuring the teacher that no, we did not send tequila in her water bottle and there’s no need to call child services. Our normal is casually going for a walk a few minutes after she walks to school by herself to ensure that she actually got there and didn’t get distracted by squirrels, dogs, rocks or random strangers, and conversely, looking out the window at home time until I see her coming around the corner without actually being caught looking out the window until I see her coming around the corner. Our normal is dealing with a tween’s changing emotions and a junior elementary school brain. Our normal is replacing lunch containers and bathing suits because she can’t remember to put them in her backpack. Our normal is hiding snacks if we want to have any. Our normal is a lock on the cake sprinkles, if we buy them at all, because she will eat them with a spoon until she is twitching because she was born addicted to sugar. Our normal is not your normal, and unless you live it, you can’t possibly understand why I buy her the expensive underwear and buy mine in a bag of six at Walmart, because it’s the only underwear she’ll wear and it beats the alternative.

I Grieve

I grieve the child that might have been, while loving the child that is. I grieve the ability to take her to a symphony concert that I am singing in because there is no way she would get through it. I grieve the simple tasks that are so difficult for her, like remembering to wear socks or bring her lunch containers home. I grieve the mean comments, the judgements, the ostracizing and the bullying. I grieve the assumptions that it is my parenting, rather than a neuro-developmental cause. I grieve the loss of myself, because this is so all-consuming and demanding there is no time left for me. I grieve my loss of love of school because it is not a happy place for my child, and by extension, it is no longer a place of happiness for me, a lifelong learner who loved school. I grieve.

I’m Lonely

So often, it’s easier to pretend everything is fine than to try to explain how it’s not. Most of my friends and family know some of the story and the issues, but very few know the whole thing. It’s easier to filter the information than be judged by people who should know better. I don’t need any more suggestions, judgement or “tough love” ideas. I have bookshelves full of them, thank you. So my circle is very small, and getting smaller. It rarely expands.

I’m Scared

I’m scared I don’t take proper care of myself because there aren’t enough hours in the day or dollars in the bank. I’m scared I will fail my daughter. I’m scared all the judgey people are right and it IS my parenting. I’m scared we won’t get the strategies and resources we need in time to help our daughter succeed to the best of her potential. I’m scared I will burn-out, flame-out or implode from the multiple demands and responsibilities and I’m so damn tired. I’m scared I have lost so much of myself that I won’t ever find it again. I’m scared of puberty because adding hormones to this cocktail is going to be so much fun; I already know what the full moons are like. I’m scared of the future because I’m not getting any younger and I was the caregiver to my mother at the end, but who will take care of us because our daughter won’t be able to. I’m scared that her own healthy dose of stubborn and temper will be her undoing and I won’t be able to do anything about it. I’m scared.

I’m Tired

I’m tired of staying up way too late trying to finish work, or find another solution or squeeze five minutes of time to myself because it’s the only time in the day I’m off the clock. I’m tired of the looks, the whispers, the loud comments and the expert pronouncements from people who wouldn’t last as long as it would take us to drive to the end of our street. I’m tired of researching, learning, trying, failing, and doing it again so that I can educate myself, my family, our friends, the health professionals and the educators on what makes my daughter tick, what works, and most importantly, what doesn’t. I’m tired of juggling bills, putting off repairs or begging agencies for resources or assistance so that we can help our daughter succeed. I’m tired of having the same fight with educators every year about the same issues because they haven’t bothered to read the voluminous file that is my child, or even the much smaller IEP that contains the essential information to help her succeed. I’m tired of having to ride my broom into meetings because that seems to be the only way to get people to pay attention. I’m tired of having to be THAT parent, because collaboration and cooperation aren’t working. I’m tired of the look of longing in my child’s eyes when she sees the other kids in the neighborhood playing together, both of us knowing she wouldn’t be welcome if she went down the road. I’m tired of iCarly, Sam and Kat, Drake and Josh and H2O on a constant loop because perseveration and OCD are a lethal combination. I’m tired of whatever the current obsession is, whether it’s Beanie Boos, pill bugs or tattoos and piercings because I will have to hear about it every waking minute of every day until she moves on the to next one. I’m tired of trying to stay a step ahead of whatever it is she will eat for now, and tired of getting the purchase quantities wrong because I misjudged how long the food thing will last this time and I’m stuck with six packs of frozen crab my child is no longer eating and we’re out of the instant oatmeal she is now eating. I’m tired.

Before my child was the one lying in the store having a meltdown, I was smug and judgemental. That changed quickly the first time it was my kid attracting the glares as my mother pushed her grocery cart to the end of the store and disowned us until her granddaughter was back “in control.” I’m sending a blanket apology into the universe to all those other parents that I judged. Sorry about that. I was wrong.

So next time you’re climbing up on your high horse about that kid on the floor in the store, remember this: All parents, biological, adoptive, foster, step or some combination of all of the above want very simple things for their kids: to be happy, to be safe, to be loved, to be accepted and to reach their full potential. Instead of judgment, catch the eye of the mom in the center of the storm and tell her she’s got this. Acceptance and understanding can move mountains. Also coffee. Coffee is good, too.

Lisa MacColl writes about a variety of subjects including finance, investments and parenting. She is a writer, editor, crafter, baker, singer and fights the good fight to keep the cats off the table. www.lisamaccoll.com.




Reflecting on Simple Joys

Reflecting on Simple Joys

By Tyann Sheldon Rouw

Art Balloons in Air copy

I asked my twin sons what they wanted for their upcoming birthdays. Isaac didn’t respond. He’s functionally nonverbal and wasn’t interested in using his speech generating device to answer. He was only interested in watching the garage door rise and fall as he examined how the light spread across the floor.

Noah thought for a moment and said, “I don’t need a new atlas. How about shirts? Then we can laugh when we open them.”

Today family will squeeze into our modest home to eat lunch and celebrate another birthday milestone.

Isaac might reluctantly open one present before escaping to play “Wheel of Fortune” on the computer downstairs. It’s a refuge from the sights and sounds and people that overwhelm his sensory system. Some years he resurfaces when it’s time to sing “Happy Birthday,” even though he can’t coordinate his body to blow out the candles.

Noah loves the attention and company. Once he’s focused, he opens each present quickly. He barely looks to see what’s inside. Occasionally he will say things like, “Is this all there is?” even though he’s been told repeatedly that those words are rude.

Invariably someone will say, “Can you believe they’re 7 years old?”

My husband and I will answer in unison, “Has it only been seven years?” Then we’ll laugh and point to the bags under our eyes.

It’s been a long road since they were diagnosed with autism five years ago.

Isaac’s behavior was so challenging I was not sure he could remain in our home. He didn’t seem to understand language. He seldom slept. Often he was up for the day at 2:00 a.m. He didn’t go back to sleep. Either my husband or I would supervise him while the other slept. Many nights I prayed that Isaac would find comfort – and that we would – and somehow we all could put one foot in front of the other when the sun rose in the morning.

Noah said a few words, but his language wasn’t functional. His only word was “Daddy,” which was handy when I asked him who won the Miss America pageant last year. “Daddy” was his answer to everything. Most people frightened him – especially strangers — and he cried for hours when his routine was disrupted.

When I took them to a park on a beautiful summer day, they ran in opposite directions – and never to the play equipment. In fact, they didn’t seem to notice the slide or playground equipment at all.

They’ve both come so far.

So have I.

Before my boys were born, I never dreamed I could raise a special needs child or two. It seemed like a demanding job that always felt too big for me.

Kids with autism need to be taught everything. They don’t generally pick up cues from the environment the way others do. Problem solving is difficult, as is language, social interaction, and activities of daily living: eating, toileting, bathing, and dressing.

My boys have learned a lot at speech therapy, occupational therapy, and physical therapy. They’ve had feeding therapy, early childhood special education preschool, special education classes, and therapeutic horseback riding.

Now I realize my boys have taught me much more than I’ve taught them. Not all of the lessons have been easy. I’ve learned about acceptance, patience, humility, and unconditional love.

I’ve learned not to worry about the person in the store who’s giving me the evil eye when my child is having a meltdown. I’ve learned to advocate for my sons’ needs. I’ve learned I’m a lot stronger than I ever thought I could be.

I’ve learned that the boy who has no speech has a lot to say. I’ve learned that my son who is a walking encyclopedia views the world from a different lens. I’ve learned that getting angry gets me nowhere. I’ve learned how to recognize the little victories that are big victories in our world. I don’t diminish them.

I often wonder what kind of person I may have become had autism not entered my life. I believe I’d be more rested. But would I be shallow or judgmental? Would my new house or car be my biggest concern? Would I be oblivious to life’s simple joys?

Isaac and Noah are my gifts. They have made me a better person and mother.

Today I will stop to reflect upon their growth during the last year, and I’ll celebrate how richly I’ve been blessed. Then I’ll serve up those thoughts with a big piece of birthday cake.

Tyann Sheldon Rouw has been published on Yahoo Parenting, Scary Mommy, The Mighty, the Chicken Soup for the Soul series, and various newspapers. She blogs at Turn Up the V. Find her on Facebook and Twitter

What the Photographer Saw in My Special Needs Child

What the Photographer Saw in My Special Needs Child

By Marilyn Maloney


When my daughter was born, she was perfect. She had blue eyes like sparkling pools, dimpled cheeks, and a smile that gave her a constant look of a kid opening presents on Christmas morning.

She slowed down in development and started missing milestones around 8 months. When she was 13 months old, an MRI told us she had a Leukodystrophy, a fatal disease with no cure and no treatment. We went from a state of baby bliss to rock bottom and had to start over in a world we had not been exposed to. It was like we had previously looked through a pane of glass at the world of special needs, and now we were on the inside.

Even as my daughter grew, she did not look like she had a disease. She had bouncy curls and a happy smile. Although she did not walk or talk, she was small enough that people didn’t notice. Well, maybe they noticed, but I told myself they didn’t.

When I saw other special needs kids and adults who could not control their movements, arms in odd positions and drool sneaking from the side of their mouths, I was ashamed of my thoughts. “Maddy is different. She is beautiful and any drool is from teething. She holds a spoon and brings it to her mouth.”

As months stretched to years, she slowly began to look like she had special needs. She had a hard time holding up her head. Receiving blankets transitioned to become bibs for the drool. She lost her grasp reflex and could no longer hold the spoon. There was no denying that we were a special needs family.

Avoiding the Texas heat, we had family photos done while visiting my mom in Western New York. We asked the photographer to come to the house during that short time when neither our toddler, Jimmy, nor Maddy would need to eat.

Megan came walking down my mom’s street in a loose white top and shorts, camera hanging from her shoulder. She looked relaxed and welcoming, even while carrying a bean bag chair about half her size. We played and sat with the kids while she snapped photos and chatted. There was no formal setup. The humidity pulled Maddy’s curls up into perfect spirals as she laid on the bean bag chair in the shade.

My mom’s backyard grass was a vivid green color I don’t think exists in Texas. It was soft and cool, a background framed with Rose of Sharon and lilac bushes. Jimmy was quiet and curious, just starting to walk on shaky legs. He stared intently at the camera while holding my hands. Maddy smiled and laughed when my husband, Jim, threw her into the air.

The shoot was simple and easy and the time flew. Megan tried some gluten free coconut chocolate chip cookies my mom made and we thanked her as she said goodbye. She thanked us too, because, we quickly learned, that’s just how she is.

Over the next week or so Megan emailed me about how gorgeous my children are and told me she was interested in learning more about doing photography focused on special needs. Many special needs families don’t bother getting family photos because after the stress of getting the family ready, the photographer may not catch one smile or the slightest hint of eye contact.

Another week passed and Megan sent me the link to our photos. I logged on with a password and there she was–my Maddy. The first photo was the way I saw my daughter every day, as if the camera saw through her disease. She was a beautiful girl with the big blue eyes, bouncing curls, and a smile that makes everyone around her smile. I did not see my daughter struggling to hold her head up or drooling onto her bib while unable to stand and walk. I saw my girl looking right at the camera, smiling and laughing with her dad.

To the outside world, my daughter is the girl in the wheelchair, with children staring and friends who are so sorry she has this disease. These photos showed the girl as we see her, disease-free, holding up her head and smiling proudly, free to be Maddy, instead of Maddy who has Leukodystrophy. These were so much more than family photos.

You know how in some photos, you can tell what the photographer is feeling? In these, I could tell that Megan saw my daughter as her perfect self, Leukodystrophy and all.

Marilyn Maloney is an engineer and late-night medical journal reader.  She lives with her hero of a husband, beautiful puzzle of a daughter, and her cheeky son who likes to jump off the furniture.

Photo: Megan Dempsey

I Just Needed A Hand

I Just Needed A Hand

By Amy Challenger

overwhelmed-mom“Get that kid OUT OF HERE!” yelled Cindy the music teacher, swatting at the air with one hand while holding up a basket of CDs with the other. She elevated the gifts she had promised to the toddlers, high above their chubby grabbing hands. Her torso twisted, pulling at the seams of a tight, bright-colored jacket. One fuzzy-haired 3-year-old grabbed at her polyester pants. Determined to get to the CDs first, he had already leapt across the room to get to her, like a mini ninja warrior, ignoring her request to stay seated. The other toddlers had followed—a drooling sea of arms and “gimmees.” Now Cindy toppled onto herself, tripping on her awkward feet, before regaining her balance. Her round nose wrinkled beneath her eyes bulging downward, glaring at the lead ninja.

My boy.

Did she really just yell that in front of all of these moms and kids? I thought, glancing at the horrified faces of the women standing along the rim of the scene.

My face flushed. I felt like I might pee my pants. I was helplessly on the far side of the mass of little bodies, and now my arms reached out, paddling through the toddler current to get to my boy. Must. Get. There. Before he tantrums! I thought, panting, trying not to fall on top of my seven-week-old baby girl, who was sucking from my breast, beneath a white cotton sling attached to me.

As music class had ended, Cindy announced that she’d give gifts to all children who remained seated, waiting for their names to be called. The gifts were CDs packaged in colorful cases. I had calculated that these “flingable” objects handed around could trigger my boy’s impulse to chase and grab. And surely the word “gift” would zap his impulse control. The excitement could inhibit his ability to consider other bodies, recognize sounds, or follow commands. As I had considered the impending doom, my infant started to cry. Surely this additional shrill sound would only make my boy’s sensitivity worse. I quickly looked down to quiet the baby, latching her on to my nipple beneath the white cotton fabric of my sling. And then my boy disappeared.

Now Cindy’s perfectly manicured fingers were attempting to detach him from her thigh. “Let go!”

While still clinging to the polyester, he screeched back, “Gimee. Gimee da CD!”

He had been diagnosed with ADHD and symptoms of sensory processing disorder. He had anxiety, maybe PTSD, possibly from his open-heart surgery during infancy and the hospitalization and medications he had received for a life-threatening arrhythmia.

“Excuse me, excuse me,” I said nervously, knowing loud noises, chaotic motion, and prizes yanked AWAY would ensure a complete meltdown.

Weeks before that morning, I had explained to Cindy that my boy had special needs. He’d been kicked out of preschool on the first day for no specific reason while I was in the hospital having my third C-section. “He just doesn’t fit here. Can’t return tomorrow,” his preschool teacher had said through the phone by my hospital bed. Since that morning, I had called all sorts of classes, therapy groups, and preschools, searching for help while caring for my two toddlers and infant, all born in less than three years. When I found Cindy, the music teacher, I had explained that my boy sometimes became “over-stimulated,” particularly during transitions; but a calm music class could provide therapeutic benefits if lead by a patient instructor. She had assured me that, with her numerous years of experience teaching in Tiburon, California, she was fully capable of teaching every kind of child—even a boy like mine.

But there we were. Commanded to GET OUT.

“We have to go, honey! Come on!” I tried, when I finally reached my boy. He kept jumping and pulling on Cindy, so I lifted him with my free arm and pulled him away hollering, kicking, and hitting me. Once close to the doorway where our shoes waited, I lowered myself to the floor, with him on the opposite side of the baby still nursing in the sling. I groped for his shoes with my free, shaky hand. “We have to go,” I said, using my feet to slide our bottoms toward the door while my clumsy swinging arm attempted to land a blue crock onto his wild foot. It was hopeless. My boy hated shoes—they itched his skin—they confined him.

Meanwhile, Cindy handed out the CDs, smiling to the other moms and children, compensating for her earlier outburst. She dropped a plastic case next to me with a grimace, reminding me that I needed to leave.

“I’m trying!” I yelped in disbelief as my boy grabbed for his prize.

“Lemme go!” he screamed kicking at the air, scratching my arm. My infant girl finally became irritated, belting out a cry from below. It was all so ridiculous—opposite of how I had imagined motherhood to be. I sucked cracker-smelling air inward, as I tried to imagine a way out of my humiliation. The tears forced their way out with the exhale, exploding down my red cheeks. My sobs jerked uncontrollably, revealing the truth. I was so tired. So lost. So lonely.

I’m a terrible mom, I thought. Pathetic. I couldn’t even get out of the damned classroom. Worse, I was partially blocking the door, like a wet, ugly mat. The other moms’ white sneakers stepped across our sobbing heap on their way out of the classroom, yanking children behind them, tripping and bumping our legs. They did not speak to me. They did not look down at me. They just left. The children stared a little, peering back, as they were pulled out the door.

After most mothers had disappeared, I finally dragged my shrieking boy outside by the legs, into the dry fall breeze. As soon as we reached the pavement, he jumped up and ran barefoot through the busy parking lot. I chased him, seeing Cindy through my tears. She watched through an open window. “I told you about him… I told you,” I cried.

“This was your fault. Not his. Your infant, your breastfeeding was disruptive,” she called like an angry crow. (I had seen many other moms come with infants, so her comment made little sense to me. But nothing did that day.)

Six years later, after thousands more difficult days of parenting, I reflect back on that episode, and I feel sad. I needed kindness. I needed help. But believe it or not, I think that flailing on the floor of a classroom was one of my early motherhood gifts in disguise. That day, I was forced to learn about parenting from down on the floor where part of my pride fell away in a stream of tears. I had to learn to stop seeking approval from Moms. In order to embark on my mothering journey, I had to find my reward in loving, understanding, and advocating for my struggling boy and his siblings. I needed to focus on my family.

And later, as my mama feet became steadier, that lonely low-down perspective taught me to watch closely for the mothers who might need me. Because I know that a hand lowered, a nod, or even one kind word can make all the difference to a mom.

I hope that my lessons from the floor can become another Mom’s bench to rest on—perhaps a sturdy platform to reach out from, finding at last another mother’s welcoming hand to hold.
Amy Challenger is an artist and writer working in Fairfield, CT on her first novel about a boy’s struggles and triumphs growing up “different.” This year her work relating to parenting has been published in the Washington Post, Mamalode and on her two blogs specialneedsblessings.blogspot.com and thefruitofmotherhood.blogspot.com.

Cold Inside

Cold Inside

Toddler Boy Playing ArtBy Lynn Adams

Before I had children, Autism Spectrum Disorders were my specialty. I reduced my child psychology practice to half time after James came along, and soon realized I couldn’t close the door on autism at the end of the workday, because it was in my house.

I first heard about autism in high school, at a children’s residential facility where I volunteered. Sam was lying on his back and spinning around in circles by kicking his feet, as if on an invisible merry-go-round. He wasn’t brushing his teeth alongside the other children, because he was having too much fun at his own carnival.

I determined to become part of Sam’s carnival, and eventually learned to play with kids whose parents thought they couldn’t play. So 20 years later, why did I find myself on our playroom floor, my back against the sofa, writing down everything James said, while he did his own thing? “You sit on that. You like that. You put it down there,” I transcribed, noting he had his pronouns reversed. I hope I took the time to talk to James as I wrote, but I don’t remember.

My son was a loner. It didn’t come naturally to him to connect with anyone, including – and maybe especially – me. Instead of crying or looking for help in a tough situation, James mounted a noisy protest. Every tantrum was a puzzle. When he started talking, my first sign that he’d hurt himself was hearing him screech, “No ice!” as he ran away from me. If I figured out he had a pebble in his shoe, captured him, and removed it, he calmed down immediately.

By contrast, every time I kissed James’ cheek, he would rub the spot with his hand, looking away, like a teenager. He was unaffectionate. He had sensory issues. Of course. He had autism.

I knew that underlying health issues could be a source of toddlers’ developmental and behavioral problems. So, I arranged a medical evaluation for various thyroid, allergy, immune, and metabolic problems that might have been an easy fix. And the doctor found something. We discovered that one of James’ vaccines hadn’t been effective, exposing him to frequent upper respiratory infections. And all that time I thought he had allergies. He got a booster shot and the colds went away, but the autism didn’t.

That’s right, I’m the mom who thought that a vaccine might cure her child’s autism.

Practically speaking, as part of these work-ups three-year-old James had to have his blood drawn three times in three weeks. Although James freaked out the first time, the second and third times he patiently held out his little arm as the nurse poked around for his tiny veins. She kept looking up at his face, waiting for him to blow his stack. He never did.

The nurse remarked, “This is the best-behaved child I’ve ever seen!” Then she gave him a jumbo pack of Starburst and a full roll of stickers.

Her compliment felt like an accusation. I was still out of breath from forcefully extracting James from under the Lego table in the waiting room, where he’d been holed up catlike for a half hour. Before that, I’d pried him out from under the car seat, and then carried his noodle-like body through the parking lot. Back at home, he’d resisted brushing his teeth, getting into his clothes, leaving the house, and getting into the car. The whole way out to the suburban office he’d looked out the window, exclaiming with joy anytime he saw a construction truck. But each time a truck disappeared from his view, he’d kick the back of my seat.

James was a good boy, just not for me.

As my office became a refuge and I accepted a patient who would eventually become James’ first friend, I began to wonder whether I was ever meant to be a mother. One evening, my infant daughter asleep on my shoulder and a glass of gin in my hand, I made a suggestion to my husband Bruce. Maybe I was better off, and James was better off, and the community would be better off, with me as a psychologist rather than as a mother.

A parent-ectomy. That’s what Bruno Bettelheim proposed in his 1967 book, The Empty Fortress, a book my parents might have read if I’d had autism. Early professionals observed that mothers whose children had autism were cold and distant: Refrigerator Mothers. But sometimes it feels better to focus on doing right by your child, than to interact with him. Contemporary studies refer to “parental stress” and investigate the effects of having a child with autism on the parents.

Instead of condemning me for my cold-hearted suggestion, Bruce appealed to my sense of reason. “Think of your favorite families you’ve worked with, your favorite adults with autism,” he suggested. “What did they all have in common? Good psychologists, or good parents?”

Kids in our town had some choices when it came to psychologists. But James had only one mother.

Around this time, I came across a newspaper article. Researchers at the Yale Child Study Center, my old stomping ground, found that administering oxytocin, “the love hormone,” led to activation in the brain’s social regions in a small sample with mild autism. I wondered where I could get some oxytocin for James, and then flagellated myself for wondering.

James needed a mother’s love, and I was giving him everything but that.

I stopped reading about autism, and started reading about motherhood. I especially liked Erma Bombeck, who wrote, “A child needs your love most when he deserves it least.” At first I took my fondness for this quote as further evidence that I’d become a refrigerator mother, but later I realized how many kids it’s kept alive.

So James didn’t know how to connect with people. I did. It was time to show him how.

Neglecting to tell Bruce where I’d learned it, I pulled out the trusty “basket hold,” a form of restraint I’d used during my internship in a children’s psychiatric hospital. It was the only way to get ahold of James. You grab the child’s wrists, cross them in front of him, and pin his body in your lap with your legs crossed over his legs and his head under your chin. It’s a hug you can’t refuse.

As I held James I would say things like, “I know you’re mad because your toy broke. No biting, though. That hurts me. You’re my boy. Mommy loves you no matter what.”

I was talking to myself, more than James.

Over time, I didn’t have to hold James so tight to keep him near me. When he was really upset, he’d often give up his struggles and sob on my shoulder. Then I really felt like his mother. 

One day after a basket hold I kissed James wetly on the cheek, and he immediately wiped it off. I decided to ask him about it. How did I know why he did it?

“Did you wipe that kiss off?”

“No,” James said, still rubbing.

“Well, what are you doing?” I asked.

“Rubbing it in. That way it makes you love me more.”

Now at this point, James had his pronouns reversed. So, he probably meant, “It makes me love you more.” But who cares what direction he was heading? The fact that the word “love” was in his vocabulary suggested I was on the right track.

Author’s Note: James still struggles with the stresses of everyday life, and our family struggles along with him. But I don’t dwell on the word “autism” as much as I did when I started writing this piece. Instead, I focus on James’ love of guitar and flag football, and on his strong relationships with his family, neighbors, teachers, and friends. I’m proud to say he’s the only member of our family who’s consistently described as “sweet.”

Bio: Lynn Adams is now a full-time wife and mother in New Orleans. Her work has appeared on Salon, Brain, Child, and The Mid, as well as in the anthology, It’s Really 10 Months: Special Delivery. Find more at www.lynnadamsphd.com.


Place Between Special and Olympics

Place Between Special and Olympics

By Caurie Putnam


Somewhere in the narrow swath between Olympics and Special Olympics you will find an athlete named Brady. Not Tom Brady or Brady Quinn, but Brady Putnam—my Brady, age 8.

Brady was born with a rare genetic, neurological disorder called hyperekplexia. Hyperekplexia means “exaggerated surprise” and that is exactly what I received when Brady was born. Upon his first breath he went into a prolonged startle, froze and turned blue. It was the first of hundreds of startles Brady would have every day until he began seizure medication to subdue them.

Anything could make Brady startle—a breeze, eye contact, a barking dog, an errant hockey puck hit by his older brother Brice. It was startling. He was startling.

He was also beautiful and strong.

Despite his medications—typically fatigue inducing—he never seemed to tire. Though he hit all of his milestones late, when he hit them, it was with full force.

I secretly wondered if Brady was the son of mine who inherited not just the startle gene, but the Big Time gene. His grandfather had played minor league baseball, his great uncle was a PGA pro, and his distant cousin was a quarterback for the New York Jets—a member of the elite quarterback draft class of 1983.

Yet, when it came time to sign Brady up for Little League and Timbits Hockey, his other gene—the startle gene and the developmental delays that went with it—overpowered his natural athleticism.

I’ll never forget how excited he was to get on the ice for the first time in his padded armor with his first hockey stick. He made it through about ten minutes of practice until the cold sent him into a prolonged startle. “Just breathe baby,” I whispered as I took his sweaty helmet off.

“Me done with it,” Brady said later, of hockey. “Me done.”

Brady was crushed ice hockey was not for him—neither was soccer or swimming or gymnastics. Little League is currently on the chopping block. My boy who has hit at least a single every time at bat this season recently had a prolonged startle in the outfield and had to be removed from the game. “What’s wrong with Brady?” his teammates asked.

It’s complicated.

Brady, who is in an inclusion second grade classroom, has had some luck with adaptive sports—sports modified for children with medical or developmental challenges. He plays adaptive lacrosse, which he loves. The coaches are understanding of his startles, his speech disorder because of his startles, and his need for frequent breaks. Yet, when Brady is “all there” he dominates the net. Sometimes it seems unfair. He is so good.

He did therapeutic horseback riding for years, but he reached a point where walking in circles with a leader was not enough to satiate his love of competition. “Me want to jump barrels,” he said. “Me want to be a cowboy.”

Sometimes during adaptive sports clinics my blonde, lithe, muscular Brady is mistaken for a volunteer—a child from a local mainstream sports team helping out the “special” kids. If you evaluate Brady purely on the force of his throw, the power of his kick, or the speed of his run you would probably make the same mistake.

If you get down on one knee and ask Brady his address or where the nearest bathroom is, you will probably get a blank stare if you get eye contact at all.

I grapple with where Brady belongs. He is clearly an athlete, but what kind of athlete?

One weekend in June, the 2015 Summer Games of the New York State Special Olympics came to our small, college town of Brockport, NY. Brady has been eligible for the Special Olympics since he was a preschooler, but I never pursued it.

With the state games in our backyard, I decided to bring Brady and his brother Brice They were immediately intrigued and we spent most of the weekend watching everything from the opening ceremonies to the closing ceremonies and all sports in between.

There were 2,000 athletes at the games and hundreds of volunteers. At times, I had problems identifying who was who. I had wrongly assumed the Special Olympics were primarily for children with Down syndrome—which Brady, even though he has the distinctive almond eyes, does not have. I was wrong.

The games, it seemed, were for children like Brady. These kids were awesome athletes! Their shot put throws, their moves on the basketball court, their speed in the pool. I don’t know what the majority of their diagnoses are or what is on their IEPs, but their passion, athleticism, and determination was very clear.

Brady wanted a medal, which I explained to him he had to earn by competing.

He understood and I suggested we ask one of the athletes if we could take a photo of her medal instead. He liked that idea.

A very nice young lady agreed to let us photograph her gold medal for swimming, but with one caveat—she wanted her ribbon for 5th place in the photo too. Brady saw me framing the photo with my iPhone and noticed I purposefully did not have the 5th place ribbon in the frame. Did he really want a photo of a place ribbon?

“Mom,” he scolded, “get the ribbon too.”

Brady got it. He got it even before I did. The love of competition, the love of sport—what drove this young woman, what drives him too.

As we were leaving the closing ceremonies Brady said, “Mom, me want to do this. Me want to do the Special Olympics.” I exchanged a look with his sage older brother—the one who would never be content with a 5th place ribbon at an ice hockey tournament—and he nodded in support.

“When we get home Mommy will send an email to the Special Olympics and sign you up,” I said.

My starling beautiful boy smiled.

Caurie Putnam lives in Rochester, New York with her husband and two boys. She is a columnist for the Democrat and Chronicle, blogger for The Huffington Post and stringer for Reuters. Find her on Twitter @CauriePutnam.



WO Wings ARTBy Elizabeth Knapp

This is a story about the one who was brushed aside, the cancer child’s sister…

Four years ago on Valentine’s Day, my four-month-old daughter Molly was diagnosed with infant leukemia.

Four years ago on Valentine’s Day, my older daughter, then four years old, came home from preschool with her first bag of Valentine’s Day cards, brimming with happiness. She kicked off her boots, shrugged out of her puffy winter coat and before I could remind her to hang it up she spilled her many, lovely valentine cards out onto the hardwood floor, rifling through them to show me certain ones.

Then she noticed that her aunt and cousins were there. She noticed her baby sister was sleeping, her head lolling on my shoulder, instead of watching her with wide-awake eyes. She noticed that I wasn’t smiling.

“What’s wrong, Mommy? Look at this one! It’s made from a doily and it has my name on it! And why are my cousins here?” She fired questions at me.

I passed Molly to my sister-in-law and knelt down to be at her level, my heart breaking as I stuffed the cards back into their paper bag without looking at them. “Something’s wrong with Molly. She’s very sick and Daddy and I need to take her to the hospital. We might be gone all night. But you get to have a sleepover with your cousins tonight! Won’t that be fun? You can bring your rolling bag.”

She looked at me dubiously. “Can I at least show you my valentines before you go?”

Tears welled up, threatened to drip down my cheeks. I pushed them away and told her that I couldn’t look at them right now because Daddy and I had to leave right away, but I knew her cousins would be thrilled to sort through them with her. That I would look at them as soon as I could.

We went upstairs together to pack pajamas and a change of clothes. Her special stuffed lamb, Little Lamby, was to ride in the bag with the valentines. We packed her toothbrush and no-pull hairbrush. I took Molly back into my arms, kissed my reluctant and teary older daughter goodbye and watched from the window as she trudged out to the car with her cousins.

This could be a story about my baby who had cancer, but it’s not. There are other stories about that, stories about her scars, about how she almost died twice and then didn’t. Stories still to be written about the days, weeks and months during which we vacillated between fear and hope, dread and desire, boredom and anxiety. Stories that are so filled with horror I wish they were not mine to tell. I wish no one ever had to tell them.

This is a story about the one who was brushed aside, the cancer child’s sister, the one who went to preschool one sunny Valentine’s Day filled with the promise of a party and came home to have all her beautiful cards stuffed back into their drab paper bag. At least it had her name on it, looped in fancy letters: Amelia.

Amelia: my first born, my copper-haired firecracker. Amelia, who threw me into motherhood, introducing me to depths of patience, rage, love and joy I never knew existed. Amelia, who cried for ten months straight until she could crawl. Then, finally able to explore her world on her own terms, stopped crying and began to speak.

At the time Molly was diagnosed with cancer, Amelia was obsessed with fairies. She begged me to read books about fairies again and again and again. She drew fairies and wanted me to cut them out, demanded I talk for them so she could ask them questions. After being in the hospital with Molly for two days and two nights, I knew I had to go home to Amelia. But how do you explain leukemia to a four-year-old? How do you tell your daughter that her sister is just about as ill as a person can get and still be alive?

I made up a story about the fairies. Once upon a time, I told Amelia, there was a family of fairies: a mom, a dad and two sister fairies. One day, the baby sister fairy became very sick. Something happened and her body couldn’t make healthy blood anymore, and all fairies know that if a fairy can’t make healthy blood she gets very, very ill. The baby fairy had to go to the fairy hospital. The doctors at the hospital had to give her special medicine that seemed to make her even sicker but actually, they hoped, would make her better. It was red, and they had to put it directly into her blood.

The baby fairy sister, stuck in the hospital with all this medicine that was supposed to make her better but made her body feel terrible, lay around all day with her wings drooping. The mom and dad fairy were always fluttering over to the hospital, worried about the drooping wings and also worried that their big girl fairy would think they didn’t love her anymore when, in fact, they loved her so much their hearts ached every time they had to leave her. It turned out that the only time the baby fairy’s wings didn’t droop was when her sister fairy was visiting. So it was very, very important that the big sister visit her as much as possible, because all fairies know that you can’t get better if you have constantly drooping wings.

I had to stop here because I was crying too hard to continue.

The weeks that followed developed into a pattern. My husband stayed at the hospital Thursday to Sunday, and I was there Sunday to Thursday. Here is what Amelia remembers about that time. When I was home, we slept together at night, she and I. I had to wake in the middle of the night because, as a breastfeeding mother away from her baby, I needed to pump milk for Molly. Amelia, so in tune with my rhythms, would wake with me and follow me downstairs, the steady whoosh-pop sound of the pump lulling her back to sleep, slumped next to me on the couch.

On switch days, when John and I swapped duties, Amelia would usually come to the hospital, too. Molly’s eyes would light up when her older sister came into the room. Amelia learned quickly to be mindful of the IV lines. She got to know the nurses and the child life specialists, where the art supplies were kept and that the patient kitchen was always stocked with popsicles and ice cream. Sometimes the two of us would explore the hospital, tunneling through dark hallways and popping out in unexpected places. One cloudy spring day, we found our way a secret garden surrounded by towering hospital walls. On warm days, when Molly was well enough to leave her room, we took her with us, her IV pole bumping over the walkway.

After Molly came home, Amelia learned to live with uncertainty. Any fever in a cancer child is cause for a trip to the emergency room. Which also means trips to the emergency room for the sibling. Bringing Amelia with us meant that we loved her just as much as Molly, that she was an integral part of our family, too important to be left behind. Trips to the ER were an adventure for her and she was a distraction for us. As a cancer child, Molly had top priority in the ER but once we were in a room, there was lots of waiting and wondering and sitting around. Amelia’s presence cheered up Molly and made it impossible for us to sink into our own gray worlds of worry and fear.

Once, Amelia received a trophy from an organization that supports siblings of kids with cancer. It still sits in the center of her bureau. “AMELIA,” it reads, “SUPER SIB TO A CANCER KID.” And even now, four years later, when asked what makes her special she replies, “My sister had cancer.”

I have to believe that my thoughtful, serious firstborn baby has learned things—about compassion, about rolling with the punches, about finding your place when the world is not about you—that she may not have learned had her sister not had cancer. She played with kids in the playrooms with smooth, shiny heads like her sister’s, kids in wheelchairs whose cheeks were swollen from long-term steroid use, kids whose IV poles clattered after them wherever they went.

This story began with the cancer child because when you have a child with cancer their sibling, heartbreakingly, comes second. Their valentines will sit unappreciated in their bag. Their own plans for the day will be swept aside when their sister wakes in the night with a fever.

The year Molly had cancer, I recycled Amelia’s crumpled, forgotten valentine bag without ever looking at the cards inside. This year, four years later, Molly went to her own Valentine’s Day party and came home with her own paper bag, a fancy “Molly” scrawled across the top. She turned her bag upside down and the cards fluttered out on the floor. My two girls sat together, admiring the cards, their heads touching, blond hair mingling with orange. Watching them, I could see their wings humming happily behind them.

Author’s note: Molly is almost three years off treatment and remains cancer-free. She delights in provoking her big sister in a myriad of ways. Amelia is a curious and thriving second grader who, despite said provoking, continues to champion her little sister in every way.

Elizabeth Knapp lives with her family in a small town in Vermont. When not enjoying the antics of her two young daughters, she can be found writing, gardening and wandering the woods and fields around her house.

The “R” Word

The “R” Word

WO The R Word ArtBy Susan Lutz

I stopped the cart and wanted to laugh. I wanted to cry.

“My brother has three retarded kids,” a man said as my son, Addison, and I passed him in the canned food section of the grocery store. Addison was sitting in a fire truck shopping cart meant for toddlers. He was eight. He tried to beep the horn, but it didn’t work.

I paused. I turned to look at the man. He smiled and told me he really felt for me. “My brother has three of them,” he said again, as if we were talking about cars.

I made a sound I can only describe as a sputtering chuckle. Should I smile and say thank you? Did he just give me a compliment? Or was it an insult?  Retarded. I cringe at the sound of it. The tone is harsh. Retarded. Images appear in my head of poor, sad victims.

I don’t always have time for an educational lesson on the proper use of the “R” word. Campaigns run across television and the Internet to practice compassion and an end to the “R” word, that unspeakable and degrading term used to refer to people with disabilities. Retarded. I looked at the man’s weathered face. I guessed he was in his late sixties. His cart didn’t have much in it. He just kept staring at us. I felt like my feet were glued to the floor.

When Addison was born, I was given a list of characteristics that were consistent with t21, or Down syndrome: low muscle tone, round flat face, almond-shaped eyes, a palmar crease, eye folds, mental retardation, small ears and flat nape of neck. The “R” word nestled in the group like dish soap on a grocery list. There’s always room to educate, but sometimes it feels preachy and weird. Sometimes even I use the “R” word. Medical or educational moments exist when I can find no substitute. I guess the problem comes with the intent.

“Leben! Leben! Leben!” Addison yelled. He pointed to the sign above his head. We had skipped aisle eleven and gone straight to aisle nine. Addison likes things in order.

“It’s a lot of work,” the man said. He looked at the green beans in his hand and then at my son.

“Yeah,” I said. I nodded and offered a half-assed smile.

“Leben!” Addison yelled even louder. I knew the whole store could hear us. I reached for a can of peas and threw it in the cart. I made that strange chuckling laugh again, waved good-bye to the man and moved on.

Before Addison was born, my exposure to children or adults with special needs was almost non-existent. I had an aunt whose left arm was almost useless, a result of the polio she’d had as a child. But I never thought of her as disabled. She was just my aunt who crocheted me a cool poncho in magenta, my favorite color.

Growing up, I’d lived a few blocks away from an apartment complex where adults with disabilities lived. I’d walked by it many times, curious about the apartments inside. But mostly it scared me. When I saw a resident walking towards me, I would cross the street to avoid being too close. I didn’t know what to do, how to listen or what to say. We were neighbors, yet we lived so far away.

In high school, kids wrestled with issues like racism, sexism and classism. Disabilities didn’t even seem to exist. I don’t remember seeing kids like Addison or with any special needs in my school. Where were they? What I didn’t know was that before the 1980s, children with disabilities were largely educated apart from the general population. But it’s not like I wondered about it.

“Leben,” Addison insisted again.  I’d have no peace until we went back to eleven. We turned the corner and started down the aisle. Addison pointed to the number on the sign above his head and said with joy and relief in his voice, “Leben.” He clapped. He smiled. Then, he started yelling again. “Coookie,” he said, pointing to the Sesame Street characters on the shelf. “Coookie Mosster!”

“Let’s try these,” I said, showing him some crackers.

“No,” he said. He crossed his arms in front of his chest. I pushed the cart forward and grabbed a gluten-free, cheaper brand of cookies and quickly opened them.

“Want one?” I asked. He held out his hand. I broke the cookies in half and fed him until we were finished shopping. The store was crowded. We were third in line to check out. Addison stuck his head out of the fire truck grocery cart and looked back at me. A string of chocolate-laced saliva dribbled down his chin. A ring of black crumbs circled his lips.

“Rink!” he yelled with a mouthful of un-swallowed cookies. Like those moments before a car crash, everything for me slowed down. I felt the heat of everyone staring at me. Addison could throw a tantrum, scream maybe throw something at the lady in front of us. In a second, I might lose control.

“Your drink is in the car,” I said. I looked in my pockets for a napkin and, finding nothing, wiped his face with my sleeve.

When Addison was a baby and a toddler, he was adorable. His cheeks were round and squeezable. It was easy to imagine little wings sprouting out of his back.  More than once, strangers told me I had been gifted an angel from heaven. When his pudgy hands and arms reached out to hug anyone he could find, people reached back.  He will turn nine this year. He is taller and freakishly strong. When he grabs hold of one of my fingers, he can pull me to the floor like some ancient, secret martial arts move. The low muscle tone and flexibility that kept him from walking until he was three has become a useful tool of agility and freedom. He can squirm into small spaces and disappear in a store in seconds.  And he’s fast. If he gets a good lead, he’s hard for me to catch.

“Your drink is in the car,” I told him again.

“Rink!” he said again. I gave him another cookie. The woman in front of us finished putting her items on the conveyer belt. She peered at Addison quickly, put a divider between our groceries and walked to the end of the lane.

People sometimes stare, smile or whisper when we enter a room. I know they often do not know what to say. Perhaps they tolerate or pity us. Sometimes they cross the street or walk in the other direction. Addison is rarely called an angel anymore. At times, it seems like he has traded in his wings for a pitchfork. But I still take him everywhere. By doing normal things, we become a regular sight in the world. Splayed open for all to see, we walk blemished, exposed, loud, awkward and different.

“Out, Mommy,” Addison said. He unfolded his legs from the shopping cart, stepped out and ran to the other side of the lane next to the cash register to help the cashier. He nestled between the woman and the scanner, grabbing items and waiting for the beep.

“Get back here,” I told him.

“It’s OK,” said the cashier. She was older than me and ran her register with confidence. Addison held the can of peas over the scanner until he heard a beep. He picked up a cucumber and waved it.

“Hey,” he said when he heard no beep.

“Get back over here, Addison,” I said, but I didn’t really mean it. I wanted him to have this moment of control. These were brilliant, tiny flashes of light that made a huge difference in his life. I wanted him to grab it and enjoy. I felt a relief from the constant struggle of moving forward.

“No worries,” said the cashier. Between managing my son and running her register, she looked up for a second and waved her free hand at me. I knew she understood. I stepped back and waited at the end of the aisle with my cloth grocery bags.

“Thank you,” I said quietly. Addison grabbed another cucumber.

“Wait,” the cashier said. “You have to put those here.” They set the vegetables on the scale. She pushed a few buttons. “You’re good at this,” she told him. “Do you want a sticker?” she asked when they were finished.

“Yes!” he said. He pushed back his sleeve and she stuck a happy face to the back of his hand. He looked at it, smiled and ran back into the fire truck. I gazed out the big glass windows of the store and saw the man who’d called my son retarded walk to his car. He carried a single bag. He swung his scarf around his neck. It was cold. I put the last of the bags into my cart. The cashier handed me the receipt.

“Thank you,” I said.

“He’s a great helper,” she said. She waved goodbye to Addison.

“Bye,” he said. He tried to beep the horn again.

“Do you need help to your car?” she asked.

“No, but thank you,” I said. “I truly thank you.” I pushed the cart forward and moved on.

Author’s note: The grocery store this story takes place in was small. The narrow aisles forced carts and people to
negotiate a tight squeeze. More than a year later, that store is gone and has been replaced by a big, open space with aisles I can navigate with ease. I am especially thrilled that they now have special needs shopping carts I can buckle Addison into. The cashier in this story was a real hero to me, and the store deserves recognition for employing such helpful, wonderful people.

Susan Lutz is a writer, filmmaker and photographer. Her film, “The Coffee Dance,” was awarded The Pollination Grant in 2014. She teaches filmmaking and is an editor for the Organic page at allthingshealing.com. She writes about special needs and single parenting at nomorenicegirl.com.

Top Ten Books for Parenting Children With Disabilities

Top Ten Books for Parenting Children With Disabilities

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 Geography of Normal

The Geography of Normal

Biography of Normal ArtBy Asha Dore

Right after my daughter, Margot, was born, her doctors noticed that she held her hands clasped together at her chest, her elbows bent at a 45-degree angle, her arms bowed out like wings. Her knees stayed bent like a tiny frog’s. The soles of her feet did not arch; instead, they bowed out, convex, like the bottoms of boats. The doctors in the NICU weren’t familiar with her condition so they didn’t tell me that, like most kids born with tight joints, my daughter looked “her worst”— that is, the most affected—at birth. They didn’t tell me that over the next three years, I would learn the language of her body: how to stretch her arms, legs, and feet to loosen her joints, how to navigate parenthood beside her, how to speak up for her before she learned how to speak herself, how to eventually step back so that Margot could navigate her own space in the world.

Margot was born with a condition called arthrogryposis, which means “curved joints.” About 1 in 3,000 children are born with some form of arthrogryposis, and every child born with this condition has a different level of tightness in various joints, anywhere from stuck straight to stuck bent. Any joint of the body can be affected. Some children are affected in all of their joints. Some are affected in only their hands or feet or hips.

All children with arthrogryposis have joint contractures in at least two areas of the body, and all of these children are expected to have atypical development.

For typically developing babies, those intuitive shifts of the body—sitting, crawling, standing, walking—roll forward like a series of soft waves. For Margot, those shifts develop like a line of dominoes spread too far apart: Pick them up. Set them up. Try again.

Let’s go back to the beginning.

Because of Margot’s bent joints, right after birth, she is immediately locked into a plastic bubble to be observed. Related conditions have to be ruled out. Blood is drawn, chromosomes are counted. An ultrasound wand is rolled over her chest and belly and head. The neonatologists use words like remarkable, impressive, and atypical to describe Margot’s body. Because of the tests, my daughter and I live in the NICU for seven days.

In the NICU, I learn about all the conditions for which Margot is being tested. Most are terminal. I learn that when a doctor says she is unimpressed, she means that whatever condition she has searched for on the topography of my daughter’s body has not been found.

On day eight, when no known cause for Margot’s tightened joints has been found, the automatic hospital doors open for us into a wet winter evening. I hold Margot’s tiny body against my chest. The sky is grey. I walk to my car through a freezing mist. I don’t want to set her down in her car seat for the twenty-minute drive to our apartment, but I do. Far away from my body, strapped in the seat behind mine, she is just my daughter there, just a baby, just Margot away from the skeptical gazes of doctors, their charts and diagnoses, the notes they took about our family history, as if it was a scavenger hunt leading to the elusive explanation for why Margot was born “different.”

Driving home to my husband, I replay the last conversation I had with one of the neonatologists. “Her life will be different, compared to other children,” the doctor said.

“What do you mean?”

“It’s hard to say. You’ll need to follow up with orthopedics, genetics and neurology until they agree on a diagnosis. Hopefully then you’ll find some answers about how her life will look.”

For the next year, I drive Margot’s small body from doctor to doctor, trying to determine the cause of her tight joints, even though she’s thriving. Finally, an orthopedic surgeon glances at Margot and decides that arthrogryposis is her definite diagnosis. I download the single medical text that has been published on the diagnosis and read it all the way through. Afterward, I have to spell arthrogryposis for almost every new doctor we see. At first, I hear myself spelling it with the pride of discovery. Like choosing her name, except this one was chosen for us. Even though it is a vague condition, the diagnosis itself is our compass, my entry point into her world.

Soon, spelling the name unfolds a new narrative: Most doctors have no knowledge of her condition, but in their profession, they are taught to speak in definitive terms.

They say, “She will not walk until she is five.”

They say, “She will never walk.”

They say, “She will need a ten-hour operation for each foot.”

Little they say turns out to be based on science. Margot’s physical therapist tells me, “Doctors lower your expectations so that you’re constantly, pleasantly surprised.”

She shows me how to stretch Margot’s knees and advises me, “Take joy where you can get it.”

I look down at Margot’s hands as they try to press a little triangle into a square-shaped hole. I want to kiss her gorgeous, gentle fingers. They remind me of grass and wind.

Right after Margot turns one, I find a doctor who understands her condition. He works at a hospital two states away. Twice a month, I drive Margot twelve hours round trip to watch this doctor bend her feet into a standing position. He wraps rolls of plaster around her feet and ankles and calves. A couple of weeks later, he saws off the casts, bends her feet and wraps them again. He does this again and again, stretching the muscles until the soles are flat. Later, the doctor will perform a short surgery to build a small arch in the middle of each foot.

A month into Margot’s first series of casts, she catches a bad respiratory infection. I take her to a local children’s ER, and she is admitted. While I’m there, I spell arthrogryposis for the nurses and doctors. As I say the letters, hands scribble them down. They sneak suspicious glances at her casts, then at me. They ask me to explain, again, why she wears them. I give them the phone numbers of the doctor who casts her two states away and her local pediatrician, but it is a Sunday. By the middle of the day on Monday, the doctors have gotten hold of someone who has confirmed my stories. They stop asking questions. They stop staring at Margot’s casts. They shake my hand. They give me a chart to monitor Margot’s O2 saturation. Finally, I’m part of her care team again. When the numbers I record on the chart declare Margot’s again in good health, she is discharged.

Margot wears the casts for almost six months before her scheduled surgery. People approach me to ask the questions, “What’s wrong with her?” or “How did she get hurt?” Or, they declare their judgment more directly, “Watch out. Don’t want to hurt her again, Mom.”

I learn how to squirm my face into a smile. I answer their questions. I spell arthrogryposis. I print out cards that list the name of a website with information on the diagnosis. People approach me at the grocery store, the post office, the mall and the park. I find out that I’m no good with these unexpected social demands. I feel like I have to be friendly. To put on a good show. To fix their language about disability, even though it is a language that I barely understand. I say, “There is nothing wrong. Her name is Margot. This is her diagnosis.”

Some people walk up and point to Margot’s casts and say, “My daughter/granddaughter had to wear casts like that. They’re so heavy, aren’t they?”

I want to hug these people and thank them for closing the space between us. I try to mimic their vibe. I ask one woman whose daughter was born with clubfoot twenty years ago, “How did you deal with the scrutiny from strangers?”

She says, “Back then, we didn’t really leave the house. The world gets better all the time.”

I nod and think about all the times I hurried away to avoid a stranger’s questions instead of trying to smile and connect. I promise myself I’ll reach further. I tell myself, this is my job. I am a parent. Parents are supposed to carve out a space for their kids to move through in the world. I have to carve better.

Margot has surgery on her feet. A month later, her casts are removed. She’s eighteen months old when she is fitted for braces that wrap around the back of her calves, under her foot and around her ankle. It’s summer, so the braces are visible. As more people approach me with questions, I learn how to pack as much information as possible into a short phrase. I learn that sometimes, it’s okay to kindly tell them that our story is none of their business. Still, I feel a responsibility to answer their questions with a small story—her life, seen through the lens of her diagnosis. Like the story I’m telling you right now.

A week before Margot’s second birthday, she starts to crawl. Then she belly laughs and claps and bangs her feet on the ground. My husband and I call everyone in our family to share the news. Mobility. My mother-in-law says she’s so happy to hear it. Then she says, “I’m sure Margot will be normal in a couple of years.”

I don’t know how to respond, to relay the information that my mother-in-law already knows: Margot will most likely wear braces, use various devices and attend therapy throughout childhood. She will also go to the park and school. She will play with her friends and watch T.V. She will love different animals and argue with her sister about who gets to read which book. This is normal.

We’re already there.

Asha Dore’s essays have recently appeared in The Rumpus, Sweet, Burrow Press Review, Best of the Net and other venues. She lives with her husband and two daughters in the Pacific Northwest.

My Hard, Beautiful Love

My Hard, Beautiful Love

WO My hard and beautiful love artBy Heather Kirn Lanier

 “In America we are explicitly taught that a healthy kind of love is a removed love…. Love is the area outside of suffering, not within it. For me the experience of love has always been more primal…. Love is fire. It’s not a sigh; it’s a wail, one part caress and one part claw.” -Arielle Bernstein

I’m not supposed to tell you about the moment I wanted to give my baby up. A mother is not supposed to want to give her baby up. A mother is supposed to adore the need and mystery and flimsiness of her newborn. Photos in Hallmark cards show black and white portraits of naked babies, curled on the chests of half-naked mothers. The babies are sleeping. The mothers’ gazes are cast down toward their babies’ peach-fuzz heads. The mothers’ mouths are upturned so slightly as if to say, This is heaven.

But three months into motherhood, I was not in heaven. I was standing at the lip of hell, and I know I’m not supposed to tell you that the moment I fell in, I had the flash desire to hand my baby back to the doctor who was delivering me news. No. Here you go.

Dear daughter, I’m sorry. You might never be able to read sentences as complex as the ones here. You might never be able to read a single word. But I know at some point you’ll understand this phrase: I’m sorry. I’m sorry that for one microsecond of the turning and ticking world, which churns out baby after baby and new mother after new mother, I wanted to hand you back.

* * *

I was holding my three-month-old in the doctor’s office. My husband sat next to me. Throughout most of the discussion, I’d been nursing my baby, and our nursing became a part of the discussion. The doctor noted that breast milk trailed down my daughter’s cheek, which meant she did not have a strong seal or suck. The doctor noted that I still had to wear a nipple shield, which meant my daughter didn’t latch properly. The doctor noted that it took over an hour to feed my daughter, and yet she still wasn’t more than seven pounds. My husband and I both nodded.

“She’s three months old, and she’s the size of a newborn!” the doctor said, hands raised as though we didn’t know, to which I said,

“We know.”

But there were issues beyond just size and nursing troubles. When the doctor pressed a stethoscope to my daughter’s chest, the doctor said, “She has a murmur.”

When the doctor inspected my daughter’s naked body, the doctor said, “She has a Y-shaped butt crease.”

Finally, when the doctor handed my seven-pound mystery back to me, she said, “I suspect she has some kind of syndrome.”

And that, that is when I felt in my arms the brief exigency to extend them, along with my baby, right back toward the doctor and say, Here.

Of course I didn’t. Of course I loved my daughter already and I loved her too much. But for a fraction—oh, the slightest fraction—of a second, I wanted to hand her back. And that is a moment that haunts me.

* * *

Yesterday I carried my daughter, now two years old, into the hospital. We were not visiting her orthopedist or her geneticist or her cardiologist or her neurologist or her nephrologist. We were not getting a kidney ultrasound or an echocardiogram or an EEG. We were visiting her regular ol’ pediatrician. At fifteen pounds, my daughter is light but not easy to carry. She thrusts her body backward to escape my arms, or she bends forward at the waist and hangs like a rag doll to inspect some spot on the ground. But if I were to set her feet down and let go, she would face-plant into the asphalt. She cannot walk or stand or crawl. She is willowy, her thighs so thin that a thumb and finger can encircle them. She succumbs to gravity like it is an omnipotent god, and she prefers this position: lying face up, her hands fisted into balls.

So when I got to the door of the hospital yesterday, I switched my daughter from hip to hip as she wiggled and slung and strained against me, and I pressed the handicapped button, a sign that once meant “for the benefit of others” and now means, “Oh, thank God.” To my relief, the door opened, and that’s when I saw the flyer.

“Don’t Abandon Your Baby,” it said. “There IS Another Way.”

Since that office visit two years ago, I had not once thought of giving up my baby. But the flyer was comforting. I know how advertising works: if an audience is big enough, a sign is made.

* * *

That moment two years ago was fleeting, so fleeting in fact that it felt foreign, like for one flash second my body had been inhabited by something outside myself. And with my husband at my side, I immediately tamed the urgency in my arms with logic. No need to freak out. My daughter might have a syndrome. But she might not.

Also, the doctor told us that there were many kinds of syndromes, not just the disabling ones I knew about.

“You mean like Lincoln?” my husband asked. “Lincoln had a syndrome.”

My husband cited the former president’s exceptional tallness and thinness, which some physicians offer as evidence that he had Marfan syndrome.

The pediatrician nodded, but as concession rather than confirmation. As in, Okay, sure. I‘ll give you Lincoln. But then she looked down at my baby in my arms. My very small, very thin baby. My daughter was squirming, a writhing question mark. Her cries were so meek they sounded like a cat’s. Without even saying it, we could agree: we did not appear to be looking at another Lincoln.

* * *

In 2010, National Geographic decided to honor Mother’s Day by making even the most insecure mom feel decent at the job. It offered the following:

If a panda has two babies, she’ll often abandon one.

If a hamster has a baby with any congenital anomaly, she’ll sometimes eat the baby.

Hooded grebes incubate two eggs until the first one hatches; the other is left in the nest.

When I felt the urge to hand my daughter back, was it a synaptic impulse from the echo of ancient DNA? Was it in my bones, the behavior fossilized into the calcium? Was it in my cerebellum, that grooved, reptilian chunk at the base of my brain? I think of the leathery skin of lizards, the probing tongues. They don’t make snuggly parents. They lay their eggs, then crawl away.

* * *

We came home from the doctor’s office that afternoon and rushed into making dinner. In less than an hour, my coworker and her two kids would arrive. We vacuumed the carpet, sautéed the meat, chopped the veggies. We had no time to think about genes and chromosomes.

“I forgot how small they are,” my coworker said when I answered the door with my baby in my arms.

My daughter’s eyes were black back then, onyx as Magic Eight balls. They fixed intently on the objects any baby inspects—whirling fans, light through curtains.

My coworker asked to hold my daughter. When she cradled my baby, my coworker lifted her arms up an inch, her eyebrows raised in amazement.. “How much does she weigh?”

I told her. Seven pounds.

She told me about a child she knew who was also quite small, and how doctors fretted and worried the parents. She told me everything had turned out just fine.

Then her youngest child, nearly one year old, clutched our coffee table and side-stepped along it. Then she belly-laughed, a gorgeous ruby-red burst I desperately wanted to hear from my own kid. Instead I heard this, a small voice in my mind: The path of your daughter is different.

Who can dissect fear from gut, especially when one is entertaining guests? So I asked, because I still believed I belonged in the camp of typical parents:

“At what age do they laugh like that?” A belly laugh seemed a great reward for the grueling work of parenting.

To this day I forget my coworker’s answer. Six months? A year? I don’t know when kids first belly laugh. To this day, my daughter, now two, has not belly laughed. She offers many adorable closed-mouth giggles, especially if you dance with her to house beats. Bounce her to Jay-Z, to M.I.A., and her mouth spreads into a wide grin and her blue eyes light up. Out sneak her little giggles like secrets. But I don’t know when babies belly laugh and I don’t know the answer my coworker gave.

What I remember about the exchange is this: I felt envy. I envied the calm, content smile on my coworker’s face as she watched her child laugh and toddle and learn. I envied the certainty she had—her child was side-stepping expectantly toward a healthy future. Both of her children seemed to be known, understandable fixtures of her family, so foundational to the house of their mother’s life that I’m pretty sure she had no strange if brief urge to hand one over to a pediatrician.

My baby was flimsy, literally—she could not hold her head up—and she was flimsy to me emotionally. She felt like a stranger. She felt like a visitor. She asked of me everything and offered only unknowns.

   * * *

At what point did my daughter become a solid fixture to me? Was it when her actual body became more solid? When she could hold her head up, roughly at six months?

No—if she had never learned to hold her head up, as some of her peers don’t, I still would have found her burrowed into some un-mined and immovable part of my being. Her now sapphire eyes are imprinted somewhere in the deepest place in me. Her pink-lipped smirks and bowl-cut head of honey-brown hair rest in a territory so uncharted no ultrasound can scope it. There she is. My daughter. My love. My hard, beautiful love.

So when did it happen? When did she change from strange visitor to solid fixture? Was it during that first echocardiogram, which found the hole in her heart? Was it during the first catheter, inserted so that doctors could test her kidney function? Was it while I sang ABC‘s to her red-hot, sobbing face as the nurse tried again and again to insert a tube into my daughter’s urethra, and then eventually called another nurse?

Was it during the “swallow study,” when a doctor inserted a tube with a camera up my daughter’s nose and down her throat, and then asked me to nurse her? Was it, dear God, during that first seizure? Was it hearing the colloquial name of the seizure—grand mal? Big bad? Was it during the dark, cold walk from the house to the ambulance as I held her, bundled and pale and postictal, in my arms? Was it the weight of her in those arms? Nine pounds?

I can’t pinpoint the moment it happened, the instant my daughter found in my soul a fixed point that clung as fiercely as I clung back. Maybe it grew incrementally each day. Now I’m a mother who drives several hours to specialists for her, who sits through hours of therapy with her, who inserts seizure medication rectally for her, who offers spoon after spoon of food for her, changes diaper after diaper for her, with no promise that she will ever do these things by herself. I have no promise, that is, that she will ever advance beyond her need for me. My love is deep and raw and all consuming. Her need is in perfect balance.

* * *

After my coworker and her kids left, after my husband and our daughter went to bed, I did what one should not do when one possesses just enough navigational information to land into blackness. I Googled. I typed search terms like “wide-set eyes” and “heart murmur” and “Y-shaped butt crevice.” I unearthed from the bowels of the Internet rare syndromes like Turner and Noonan. I was convinced my child had this chromosomal disorder or that, and I read forums from parents on this chromosomal disorder and that. I learned that their kids had digestive issues or excessively bleeding gums or difficulty learning math, but that they were doing okay for the most part. They were even going to college.

And so I envisioned this future for my daughter: tummy troubles, bloody visits to the dentist, long nights at the kitchen table hunched over word problems. But also college. A backpack and a first day of classes and a new crush spotted across the lawn.

I did not, in all my searching, ever stumble across the incredibly, incredibly rare syndrome my daughter did have, does have, Wolf-Hirschhorn syndrome. Thus I escaped the words usually used to describe people with her syndrome: moderate to severe intellectual disabilities or, if the rhetoric is outdated and made to cut, moderate to severe mental retardation.

No, I still had no idea what lay in store for my family.

* * *

“Didn’t you just feel overwhelming love?” older women have asked me, their faces aglow with nostalgia for those early mothering days.

When I held my daughter on day one, I felt what everyone else in the room seemed to feel: fear. Her body was so small that when she emerged, a strange hush fell over the nurses. Our birth plan requested that she be placed on my chest, but instead they whisked her away. She’d been born not one minute and already anxiety trailed behind her like a heavy train on a dress. Something is wrong, the air in the room said, and perhaps that’s when the chemicals of stress eclipsed any oxytocin-induced high I should have felt.

Yet when the doctor on duty held her body up to eye-level, rotating and inspecting her torso, he couldn’t place what that something was. “Her ears are well set,” he said.

On the highway home, the world seemed too full of steel and speed for a person as fragile as my daughter. FRAGILE, read her coming-home onesie, stenciled in a font reminiscent of the letters on a cardboard box. A friend had made the onesie as a baby shower gift, and I’d marveled back then at its tininess. How could a person be so small? But now my baby’s body swam inside that onesie, her lean torso lost in the white folds, her wrists poking out of the short sleeves where underarms should be. She was too small for FRAGILE.

Didn‘t you just feel overwhelming love? Yes. I did. But women ask about overwhelming love with glowing, smiling, punch-drunk faces because they remember this love as pleasurable. My love was shocking. It was mammoth. It was a swell in the middle of the ocean, and I was a speck in a rowboat. I loved her so much I was sinking.

* * *

Eight hours after the pediatrician had suggested a “syndrome,” two hours after my husband and daughter had gone to bed, I finally shut the lid on the laptop. The Internet had done what it does best: stirred my fears into such a strange froth that I no longer knew which way was up and which fact was truth. I mistook my fear for my ground and walked on the shakiness of it, frightened in the dark, and went upstairs to bed.

When I climbed the stairs that night, my arms, empty of my daughter, felt light the way they were pre-child, when the front door was a portal I could easily pass through, when any destination took as long as the fastest route, when all my concerns were about me. Parenthood had dropped me onto a strange new planet whose turning was no longer around the axis of myself.

As I climbed those stairs, I felt the lightness and the freedom of no child to carry, but I also felt the heaviness. The fear in my heart for this new person who now occupied a place there. There was no turning back. No giving her over, even while, just a few hours ago, some reptilian part of my brain had envisioned it. And without knowing much more about her, I sensed that she was going to demand far more from me than anything in my life already had.

So that night, when I reached the bedroom and joined my husband and our newest family member in sleep, I made a change that surprised me. I moved the bassinet closer to me. I’d been feeling almost suffocated by the night feedings, by the relentless round-the-clock-ness and inescapable-ness of parenting. Despite this, I brought my baby even closer. She was swaddled in a cream blanket with only her heart-shaped face exposed. I pressed her bassinet right up against the bed. This way, mid-sleep, I could reach over and touch my daughter. This way her heart would murmur all night next to mine. If she weren’t so small, I would have tucked her into bed with me, curled my body around her seven-pound frame. Together, we’d form the shape of that question mark that hovered above us. If it were physically possible, I would have enfolded her murmuring heart into the very beating of mine. I wanted this. Wanted her inside me again. Wanted to surround her with everything that I was.

And there it is: the painful tension of parenting. Even as I wanted the uncertainty of our lives batted straight out of the ballpark of my life, I also wanted the reason for that uncertainty—my daughter—so close I could hear her breathing. So near I could hear her heart beating. I never wanted to let her go.

Dear Past Self, I think I get it. Get why you wanted to run. You were terrified of becoming the kind of parent you would need to be. Two years later, maybe I can understand the reason for that strange, fast, foreign urge in my arms—the urge to thrust her back. One part of me couldn’t bear what another part of me knew I was going to bear: the raw, gut-wrenching, heart-bruising work of loving someone who utterly needs you. The experience of now-and-forever holding, and being held by, a love so big it hurts.


Heather Kirn Lanier is the author of Teaching in the Terrordome: Two Years in West Baltimore with Teach For America, and The Story You Tell Yourself, winner of the 2010 Wick Poetry Open Chapbook Competition. Her work has appeared in Salon, The Sun, Utne Reader Online, Fourth Genre, and elsewhere. She blogs about her daughter, who is now three years old, at starinhereye.wordpress.com.

Parents in Pain, Parents Ashamed

Parents in Pain, Parents Ashamed


Start from this truth: I love my children with the heat and light of the sun. They are the most fascinating and wonderful people I know. I do not love them all the same, but I love none of them less, whether they have developed typically or are disabled. They are both my home and my grandest adventure.

Even in the presence of this enormous love, there has also been pain so deep it became desperation, despondency, and terror. In the special needs community, there is a loud message that says parents (or other caregivers) of people with disabilities may not express these feelings. We are told that our pain is self-pity, our grief is unwarranted and unkind, and hate of our children’s disabilities is akin to hate for our children.

To be really clear, this is codswallop. Piffle. Crapola. Balderdash. Rubbish. Hogwash. Bollocks. Nonsense. Muddle-headed gibberish. Feelings are morally neutral, neither bad nor good, holy or evil. Feelings are part of being human and my feelings belong to me. No person may declare my feelings wrong.

In this alternate reality, a caregiver’s pain doesn’t much matter, and may be totally invalidated, because the pain of a child with a disability is infinitely worse. Being the parent of a child with mental illness, or cerebral palsy, or autism, or Down’s syndrome, or any other disability may be painful, but since the struggles of the person with the diagnosis are greater, the caregiver’s (usually a parent) pain is null, or worse, it could be called out as self-pity.

Again: codswallop. Piffle. Crapola. Balderdash. Rubbish. Hogwash. Bollocks. Nonsense. Muddle-headed gibberish.

In what my family will forever refer to as The Bad Years (the first eight or so years of my youngest son’s life), I was a tumble of hectic anguish. My pain cascaded out of my face and into the lap of every adult with whom I talked because I was far, far too wrecked to be able to put on a social face and pretend to be OK.

I was greeted mostly with platitudes and scolding. Platitudes hurt because they minimize or invalidate reality. When someone said God never gives us more than we can handle, I heard people telling me I was fine, that if I was in pain it was because I was being a wimp. When I was scolded with statements like you really just have to learn to accept this or you should be grateful he’s alive, I felt deeply ashamed (and what is it about pain that causes people to assume that there is not also gratitude?), which only compounded my agony.

And I want to tell you this: sometimes, during the years 2009-2011, I was in serious trouble. Very, very serious trouble, close to doing terrible things that would have put my family’s name all over the internet and most newspapers in the US and even internationally. I felt hopeless, desperate, and completely alone.

All the scolding had done its job. It silenced me. Even when I feared I would do the worst possible thing, I could not speak it. The feeling, I believed, made me evil, and I wanted to hide that evil. I hoped I could pretend it was not as it was. My family was very nearly destroyed by that silence.

Return, if you will, to the fact that I love all of my children, and Carter, my youngest and my child with disabilities, not one iota less than the others. I was in agony largely because he was suffering and he is my child and I could not ease his pain. He was a whirling dervish of misery and rage. He was sleepless, aggressive, and terrified and in spite of every effort, his torment continued, day and night, for years.

I was also entirely irrational by that time. I wanted to be a good mother. I could sometimes playact at being a good mother, but I was not OK. Years of extreme sleep deprivation take their toll. Years of fear take their toll. Imagine your worst experience with any of your children. For me, before Carter, it was when my daughter Abbie was a toddler and was sick with pneumonia. She was so miserable and fretful for four days that she only slept a few minutes at a time, and only when she lay on top of me. Her fever would spike to 105 and when I gave her antibiotics and acetaminophen, she would vomit it all over me, which in turn caused her nose to gush blood. It was a very hard 4 days.

Now imagine parenting with that level of intensity and fear (except infinitely more fear, because we had no real idea what was wrong with our child) for nine years. It changed me. It destroyed me. I am OK now, but I am not the person I was before my son’s disabilities tore me off my foundation. I am not stronger.

Eventually, I fell into the arms of some parenting support groups (online and in real life) and there, I spilled my tale of woe. It’s awful, so hard, how will we survive? He’s so sick and we never sleep and the medical and educational systems meant to help him don’t, and I can’t go on. I’m in agony. Returned to me, finally, was affirmation. Understanding. Yes, this is awful. So hard. We hear you. We understand you. You are not bad or evil. You are not alone.

I even spilled the darkest of truths, that at that time I wished I’d not had Carter. No one gasped. No one paled. No one misunderstood me and thought I wished this because Carter had disrupted my life. They understood that my beloved son suffered and it felt so damn unfair, so cruel. I felt selfish for choosing to have another child. How could I have created this person if his existence was nothing but torment?

There were no platitudes. No “he is here to test your strength” (he is himself, not my test), or “he is here to make you a better person” (he is himself, not my personal self-improvement exercise), or “God never gives you more than you can handle” (he is himself, not God’s telegram by which God’s confidence in me is communicated).

No one chastised me for my pain and anger. Never were the words self-pity used; never was I admonished to accept my son just as he is. There was simply hearing. There was kindness and understanding.

It may seem paradoxical (although it’s not), but it was finally being heard that enabled me to move away from depression, helplessness, and yes, self-pity, into a place of acceptance. That acceptance is not acquiescence and it doesn’t mean I’m happy my son’s brain was damaged before his birth, but it does mean that I no longer flail against it.

It was kindness, not condemnation that saved me. It was kindness that brought me back to peace and hope. It was kindness that helped me to be (however imperfectly) the mother to my son that I want to be.

My hope is that the special needs community of caregivers, loved ones, and people with disabilities will begin to make space for respectful expression of all feelings, including the darkest and scariest ones. A parent in pain does not have to be a parent ashamed.


Photo by Scott Boruchov



By Marie Myung-Ok Lee

IMG_1024On 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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Bury My Son Before I Die

Bury My Son Before I Die

By Joanne De Simone

joannedesimoneIt goes against everything we believe about motherhood, but I’d rather bury my child than leave him behind.

My son Benjamin was born with Lissencephaly, a rare brain malformation. Developmentally he’s like an infant in a fifteen-year-old body. He can’t walk, talk, or use his hands. I bathe, feed, and diaper him every day. In the not so distant past, Benjamin would have been institutionalized. Without an arsenal of seizure medications, he wouldn’t have lived to see his first birthday. By the age of ten, he was taking twenty-six prescribed pills daily.

Many children with Benjamin’s disorder suffer with chronic pneumonia, and unstoppable seizures. Medical advances and invasive interventions, like tracheostomies and feeding tubes, have extended their lives but cannot change reality. These children die, young. I have spent Benjamin’s entire lifetime mourning the deaths of children I’ve met on the Internet.

When I dreamt of parenthood, I expected to raise children who would grow strong and healthy. I dreamt of watching them graduate college and launch exciting careers. I hoped they would fall in love, marry and fill my life with grandchildren. I never thought I’d envision my son’s name on a headstone in a peaceful resting place.

It began when Benjamin was diagnosed at four months old.  My husband and I were forced to redefine parenthood. We couldn’t protect our son from his physical devastation. Our only goal was to give Benjamin the best quality of life. We knew that the definition of “quality” would be hazy, dependent on Benjamin’s needs and our capabilities. We knew we would always be judged.

The miracle in this situation is the existence of Benjamin’s joyful soul. Although he has constant pain ranging from constipation to his slowly dislocating hip, Benjamin has never gone one day without smiling. He loves when I read, sing and dance for him. He likes to stay up late with company, and sit on his Daddy’s lap for hours. He fills our home with his contagious laughter.

I have looked into Benjamin’s eyes more than I’ve ever looked into anyone’s. I’ll never know his thoughts, but our connection is powerful. He possesses an intangible, indefinable beauty. I love my son in a way I will never love anyone else.

I used to worry about Benjamin dying but now fifteen years in, I worry about him surviving beyond my husband and me. Only we have comforted Benjamin through daily seizures and seven surgeries. We are his one true voice. No one can understand Benjamin the way we do.

A few years ago Benjamin was vomiting for two weeks. The doctors assumed it was a virus, instructed us to wait it out. We watched him grow weak. There was a vacant, lifeless look in his eyes. He was a suffering shadow of himself. I kept pushing the doctors to help him fight to live. I felt selfish. Part of me wanted him to let go and die. That felt selfish too. Because of my persistence, we discovered Benjamin had an atypical presentation of pneumonia. I fear the day my voice is silenced.

If orphaned, Benjamin would need to live in some kind of hospital facility. I’ve seen medical residencies for children like Benjamin. They are sad places. A hospital setting is a business, not a home. I picture Benjamin alone in a bed, hooked up to tubes, nothing more than an insignificant number on a chart. With that in mind, I’d rather see him dead.

I have learned to embrace motherhood with brutal honesty. I don’t actually want to see my son take his last breath. I don’t want to know life without him. For as long as I live, I will do whatever I can to keep Benjamin healthy and give him the best possible quality of life. His happiness is my happiness. He is no less than anyone else, deserves every right and consideration. As Benjamin’s advocate I can guarantee a strong proactive force. When I’m gone, I can do no more.

I will regret some of these thoughts if I do one day find myself standing on Benjamin’s grave, but there will be no peace if he is wheeled across mine.

Joanne De Simone lives in New Jersey with her husband and two sons.  She’s a special educator and writer whose work has appeared in The Huffington Post.

Since this piece was published on Brain Child, Joanne was interviewed on Huffington Post Live. Click here to watch the video.

Lucky Day

Lucky Day

WO Lucky Day ArtBy Amy Silverman

One morning not long ago, I found myself in the bathroom with my 10-year-old daughter, Sophie.

This is not an uncommon occurrence. We live in Tempe, Arizona, in an old house with screened porches and original hardwood floors, but only one bathroom you’d want to spend any amount of time in, and let’s just say its charm is limited. I’m pretty sure that if you tugged too hard on the soap dish in the bathtub, the entire house would come down.


But it’s all we’ve got, and my husband Ray affectionately refers to it as the “his and hers and hers and hers bathroom.”

As our daughters have gotten older, Ray’s bathroom time has shrunk considerably. Our little girls are growing up.

Well, one of them is. At nearly 13, Annabelle is a ballerina, petite and poised; she leaves behind a trail of hair nets, nail polish bottles and Instagram photos, and is appropriately modest about her changing body.

Sophie’s a little more complicated. She has Down syndrome, an extra 21st chromosome that affects every bit of her. From her straight hair to her oddly shaped toes, Sophie doesn’t look like the rest of us. I have heard that sometimes kids with Down syndrome go through puberty early. That is not the case, so far, with Sophie. She’ll soon be 11 and shows no physical signs of change.

She’s not very happy about that.

So there we were, Sophie and me, together in the bathroom one morning before school. We both needed showers, and she was up first. I turned on the water, then turned to Sophie.  Much like getting Sophie to put on her shoes, or eat her dinner, or give me back the iPhone she’s snagged, this task – getting her into the shower – required a serious game plan.

I cajoled and bargained her out of her clothes, and was insisting that no, taking a shower did not deserve the reward of a shopping spree at Barnes and Noble, when Sophie stopped, grinned and held up one arm.

“I have armpit hair!” she insisted. “Feel it!”

“Oh, yeah, sure,” I said, running my fingers along her armpit, distracted by the clock and the day’s long “to do” list.

“Hey, Sophie, I’m sorry,” I said, pulling my hand back and tuning in to the conversation. “I don’t feel any armpit hair. You’ll get it, but you don’t have it yet.”

Her eyes welled with tears, her naked little chest started to heave.

Shit! I thought. At this rate, we’ll never get to school.

“I know!” I said. “Let’s check and see if you have any hair – you know where.”

“Okay!” she said, super excited.

I crouched down and squinted hard, standing up straight to report my findings.  A white lie wouldn’t really hurt, right? We couldn’t afford another tardy at school.

“I see some!” I said.

You would have thought I’d told the kid we were going to live at Disneyland. She jumped up and down, squealing, her entire body shaking with the kind of pure joy most of us are lucky enough to experience once or twice in lifetime, and announced,


It was my lucky day the day Sophie was born, though I certainly didn’t know that then. Before Sophie, I’d never met another person with Down syndrome and had no idea what it meant, other than that this was going to seriously fuck things up. When Sophie was about two weeks old, I suddenly remembered something that made my stomach fall to my ankles: Pink Slip.

In the early 1990s, there was a VHS tape that made the rounds at certain parties in Phoenix. Ray and I had both seen it. Known as “Pink Slip,” it was an instructional video about menstruation from the 1960s or 70s, the kind the school nurse showed, but different because this one was geared toward a girl who was “slow.” That’s all I thought of her as – slow. It wasn’t until Sophie was an infant and I went back and watched the video on YouTube that I realized that, like Sophie, this girl had Down syndrome.

Since she was “slow,” it took a lot of extra explanation to teach this girl, Jill, about her period. In fact, in the video, the entire family gets in on the act. Mom and sister Susie show Jill a big calendar and explain (again and again – and again) that “every 28 days, blood will come out from an opening between your legs for three or four days.”   We all thought it was hilarious. At least, I thought we all did. I know I did, a fact I owned unhappily the day I made the connection between Sophie and Pink Slip.

“I’m going to have to show that video to Sophie someday,” I thought, wincing.

Ten years later, I realized it was time to teach her about puberty. I didn’t know what I was going to do about it, but I did know one thing: No way was “Pink Slip” going to be the way Sophie learned about her period.

There had to be a better way, something less condescending. Something that hadn’t made the rounds at parties – and now on the Internet – as a big, fat joke.  So when the local Down syndrome support group sent out an email advertising a puberty workshop, I signed us up.

The workshop, led by the foremost authority on Down syndrome and puberty, was split into two parts. The first day was for parents only, with a Power Point presentation and hand outs about how to teach a developmentally disabled young person about puberty. The plan was to come back the next day and separate into two groups, boys and girls, for The Talk.

“So tomorrow,” the speaker said as we were wrapping things up on the first day, “I will be showing a video about menstruation. It’s pretty out dated, I know you’ll all laugh at it, but it’s – “

I raised my hand.

“Yes?” she asked.

“Pink Slip,” was all I could get out. Ray was staring shut-the-fuck-up daggers at me.

“Oh no,” she said. “That’s not the name. I don’t recall it at the moment. You’ll love this one. It’s about two sisters -“

“Jill and Susie,” I said, my face hot.

“Well, yes,” the instructor said. “But it’s not called “Pink Slip.””

Oh God, I thought. It has a street name.

“Yes it is,” I said.

“How do you know about it?” she asked.

“Let’s talk after class,” I said.

“Okay, here’s the thing,” I told her after class. “I’m not proud of this, but we used to watch that video at parties and laugh.”

Ray chimed in: “I never thought it was funny.”

Thanks, Ray.

The next day, Sophie and I showed up for the girls-only meeting. We talked about safety and crushes and the girls went into the bathroom to try on pads. When the instructor drew a girl’s figure on the board and asked everyone to add a body part, Sophie added a bra.

When it came time for the video, the foremost authority on Down syndrome and puberty gave me a funny look then showed something else. Not “Pink Slip,” but instead an innocuous, modern, dumbed down explanation about getting your period.

Since the workshop, Sophie has been obsessed with puberty. And so in the morning, when she’s procrastinating, I find myself agreeing to let her wear deodorant – which she doesn’t need – if she brushes her hair first.  Mascara if she takes her thyroid medicine. And always, a bra from her collection.

The other day, Sophie was about to get in the shower when she announced, “I got my period yesterday!”

“You got your what?!” I sputtered.

“My period!” she said.

“Well, okay,” I said. “Here’s the deal. If you really got your period, then there would be blood on your underwear.”

We both looked down at her crumpled Barbie panties on the floor and lunged for them at the same time. A spirited game of keep away ensued.

I held the stain-free panties aloft, victorious.

“I really did get it!” Sophie said.

“You didn’t get it yet, but you will – soon,” I said. “I promise. Now get in the shower.”

Sophie climbed carefully into the tub. I adjusted the temperature of the water, secured the shower curtain, made sure she could reach the No More Tears shampoo. As I walked down the hall to my bedroom, I could hear her singing her ABCs and was reminded that, despite the bra collection and the hair obsession, Sophie is still a very young girl. And on so many levels, despite what happens to her body, she is destined to stay that way.

Amy Silverman is managing editor of Phoenix New Times. Her work has appeared in The New York Times, Washington Post, on the radio show This American Life and on salon.com. She co-teaches the workshop Mothers Who Write and blogs at Girl in a Party Hat [www.girlinapartyhat.com]. Amy lives with her husband and children in Tempe, Arizona.

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Not One of Those Mothers

Not One of Those Mothers

By Kate Trump O’Connor

Not Your Mother WI08The late afternoon sun spills across our table in the corner of the café, near the window. I’m going to confess something very important to you, so ignore the hovering waiter and lean in close.

I never thought I could do this. I never wanted to do this. I never, ever would have chosen this for me, for my one and only life, for my son’s one and only life. This? Mentally and physically handicapped? No way.

I lean over my coffee to emphasize my words as you clutch your cup, uncertain. I confess, before Thomas, my world was largely untouched by disability. Shamefully, I went on with my life, unaffected and unconcerned, and I never had to face my own ignorance. It was easy enough to turn my head the other way.

Then, one beautiful June day, I was forced to face it—and the face it wore looked just like his older brother’s, with smooth round cheeks, a tiny nose, and the deepest brown eyes.

*   *   *

Thomas arrived three weeks early on a sunny Friday in June. After an uneventful pregnancy, my early labor was a surprise, though not worrisome. We made it to the hospital with just enough time to drug me up, something for which in hindsight I am extremely grateful. Not for the physical pain of delivery—as a second-born, his birth was quick and almost too easy—but for the heart-wrenching pain and grief that came after.

Dr. T. is a calm and gentle man. He broke my water, saw meconium, and calmly explained that he would keep the baby from crying until he had suctioned our little one carefully and thoroughly. So when they rushed our new son (another boy!) across the room and huddled around him, we weren’t alarmed. Dr. T. betrayed nothing while, as I now know, he and the nurses worked to resuscitate my baby. I was too giddy to notice as ten, then fifteen minutes passed.

“He’s having a little trouble breathing, so we’re sending him to the special care nursery,” my doctor explained. I remember thinking that it was okay, that it was not a big deal, that these things happen all the time.

Then they brought Thomas to me for the first time, pink, swaddled, and crying. As I took him into my arms, he looked up at me and stopped crying. His dark, solemn eyes stared into mine, and we knew each other without question.

I had no idea, as I handed him back to the nurse for his trip to the special care nursery, that our brief minute together would have to sustain me for the unbearable weeks to come.

Maybe we should have been more concerned in those first minutes and hours. Maybe instead of making giddy phone calls and rejoicing in our new son’s birth, we should have been preparing ourselves. There were warning signs. His initial Apgar score was five. When I finally held him and said, “He looks just like his big brother,” my OB replied, “He does?” Only much later did I realize why he sounded a little surprised.

Hours passed. I was moved to my postpartum room, and still we waited to see him again.

*   *   *

I have to stop here for a minute. If I plunge ahead into the next chapter, you’ll pick up your coffee cup and hold it forgotten for long minutes, staring at me wide-eyed. It’s vital that I get this right so that you don’t do what we all want instinctively to do—put distance between my life and yours.

It’s not personal, I know. But as soon as I say anything, your imagination will stand at the mouth of that dark tunnel, the one my husband and I found ourselves hurtling down when Thomas came into the world. You’ll shake your head to clear the vertigo. Not your path in life. More power to me, but you could not imagine it.

I understand. Before Thomas, given the choice, I’d be leaning over your shoulder looking at some other mother with that same sense of sympathy and awe. “How do you do it? You’re amazing,” we’d echo in unison to that other mother who, but for the grace of God, the universe, Mother Nature, and random chance, could be us.

That other mother (who is not me, if only for one minute) sits a little apart. When she talks about her kid, there’s a certain look in her eyes, like she’s seeing something we don’t. She deals with so much, this special mother of a special child. She speaks a foreign language—of sats and meds, of OT and ST, of IEP and inclusion— that you don’t want to understand. It’s so hard and she’s such an amazing woman to deal with it all, and you know that you wouldn’t have the strength to do it.

You mean this as a compliment, this admission of weakness.

It’s not. It’s the verbal equivalent of throwing salt over your left shoulder. It’s a fervent and silent plea, Don’t pick me. I’m not one of those mothers. I’m not strong enough, I don’t have enough faith, my heart isn’t unselfishand radiantly kind. And what—oh, surely, I am the shallowest mother on earth, another reason I can’t be chosen—what will he look like? And will I be able to love him, truly love him?

You wish desperately to believe what we all say: Special mothers are chosen. God doesn’t give us more than we can handle. Even more, we seek to find ourselves lacking, wishing for the first time to come up short and prove ourselves unworthy. If God or the universe doesn’t give us more than we can handle, and I know I couldn’t handle this, then I’m safe.

I know all of this makes you uncomfortable: my child, the future you can’t or couldn’t have imagined for yourself. For your child. Two years ago if I had been told that at two days old, instead of being discharged home with me, my baby would be put on a lung bypass machine that circulated the blood out of and back into his body; that at two and a half months he would have open heart surgery; that at fourteen weeks old he would come home from the hospital, alive but fragile, with a feeding tube and an oxygen tank; that instead of holding him warm to my breast, the tiny infant I’d felt kick and roll inside of me would be nourished by the milk I pumped five times a day for months—if you had told me all of this, I would have said, Nope, can’t do it, find someone else please.

And if I had been told that my newborn son would be disabled. And if we’d known the first gift we would receive after his birth would come from the chief geneticist at the big-shot hospital, a book titled Babies with Down Syndrome? Certainly I would have paled and looked around. Me? I can’t be the mother you intend for this child. Surely you mean someone else—someone who hears all this and doesn’t turn away in fear. A woman who instead hauls out her breast pump, grabs a medical dictionary, calls the local early intervention program, and gets down to the business of mothering her special child.

Call the waiter over, I think you need a refill. I can see you’re still skeptical. You won’t let go of your certainty that somehow I am a different breed of mother. I know you’re wondering, so I will tell you. No, I didn’t get all the prenatal tests. No, we didn’t want to know. Yes, we chose the uncertainty and accepted the risk. We never really imagined our baby would be born anything but healthy and perfect.

Now, after all I’ve told you, I must concede: I am a different kind of mother. (“Ha!” you cry. “I knew it all along!”)

But let me explain.

Thomas is twenty months old now. At night I sit by his crib and watch him sleep, mouth open, the sleeve of PJs exposing too much wrist because he’s growing so fast. His pudgy hand rests on his baby-blue sheet, the one with the owls. His dark blond hair, exactly like his brother’s, curls in a cowlick over his smooth forehead. His plumpcheeks are covered with white medical tape, which holds the oxygen tube tight in his nose. I glance at the display on his oxygen saturation monitor, the numbers holding steady at 100 where they should be, the bar of green LEDs rising and falling and rising again with his every heart beat. Nearby, my husband stirs in his sleep. The baby is still in our room so we can respond when his alarm goes off, signaling a drop in his oxygen levels. It’s easier than stumbling down the long hall. I should be sleeping, too. Yet I sit and watch Thomas sleep. Because I can. I know when he wakes in themorning, he’ll pull off the oxygen tube (he needs it only when he’s sleeping) and greet me with a loud good-morning babble. His big brother will come in, asking to go downstairs and watch cartoons. “Bring Tommy down, too,” he’ll say, because to my amazement, after all we have been through, they are as close as brothers can be.

If you had told me two years ago that this child would come into my life, I would have wished I could be the mother you thought I was, but I’d have known deep down, and most ashamedly, I was not.

And if you had told me about the woman and her eight-year-old daughter who rushed up to us in the grocery store and said, “Is this your baby? He’s so cute,” I would have looked at you sideways.

And if you had told me that I would sit here today by Thomas’s crib and say that on most days I don’t think much about his having Down syndrome, I would have said you had a fantastic imagination.

But the truth is, whoever or whatever force is in charge of baby placement didn’t see anything in me that is not in every one of us—the capacity to love our children beyond measure and reason, beyond diagnosis and fear, beyond uncertainty and self. I wasn’t picked to be Thomas’s mom because I am special; I was made special because I am his mom. When I took him in my arms for the first time and gazed into his eyes, I saw only my beautiful, perfect son.

So I settle back in my chair here on this side of the café table. It may be hard and unyielding some days, it may wobble a bit when I lean, but it is my seat at the table. I don’t want to trade places. Because what you can’t see from your seat on the other side is the breathtaking view I have gazing out over your shoulder.

Author’s Note: Since Thomas’s birth, I have struggled with the moral and ethical issues surrounding the increasingly early prenatal diagnosis of Down syndrome. I do not want to impose on the personal choices of others, and yet I do not want fear—the fear of differences and the fear of our own inadequacy—to make life and death decisions for us. We are capable of much more than we give ourselves credit for. That’s something Thomas, with his determination and persistence, shows me every day.

Kate Trump O’Connor is a writer, photographer, and artist who lives outside of Boston with her husband, two sons, and twin daughters. Her website is ktoconnor.com.

Brain, Child (Winter 2008)

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Fighting Words

By Elissa Wald

My daughter’s trouble began with the word Mommy. One day I noticed that her name for me had become prolonged, so that it sounded like “Ma-ah-my.” And I guess it was wishful thinking, but at first it seemed as if she were nursing the word, drawing it out on purpose, perhaps out of pleasure.

This special rendering of Mommy went on for a few days before another development surfaced. Charlotte began to repeat the first syllable of whatever she had to say: “I-yi-yi want to go outside.” I thought nothing of this either. Every excitable child sounded like that sometimes.

Then the repetitions became more frequent, sprinkled throughout her sentences. Two or three echoes each time, with not much notice on her part. “Are you hearing this?” I asked my husband. “This speech pattern?” He didn’t, and then he did. We consulted What To Expect: The Toddler Years, and right in the section corresponding with her age, there was a paragraph or two about stuttering. It was very common, the book reassured us, for children her age to experience a period of some disfluency. I told myself not to let my family history distort what was going on here. Her repetitions were few and brief; she was in no apparent distress; it was just a little hitch that she would surely outgrow.

And then came the moment during story hour, just before Charlotte’s bedtime. She was asking for one of her Frog and Toad books when I finally understood exactly where we were. “Fr … fr … fr …” she said. “Fr … fr …  fr …”

She stared at me as she tried to talk. She was wide-eyed, as if something had her by the throat.

“Fr … fr … fr … fr …”

I held her gaze without flinching, even as I waited to be able to breathe.

Stuttering is a mysterious affliction that even the most informed experts don’t understand. The disorder affects more than three million Americans, about one percent of the population. Long thought to be a manifestation of psychological and emotional issues, it is now recognized as a neurological phenomenon with a genetic component (about two-thirds of people who stutter have at least one other relative with the impediment). Stutterers are usually fluent when they whisper, or sing, or impersonate another voice, or speak in unison with other people. They rarely stutter when they talk to animals or to themselves.

In my mother’s family, stuttering has surfaced in every generation as far back as we can trace, affecting her great-uncle, one of her maternal uncles, her cousin, her son (and my brother) Eric, and now her first grandchild. Because of my brother’s lifelong struggle with his speech—which is still with him at the age of thirty-nine—I grew up as a witness to what stuttering can do to a life. I know about the fear of introducing oneself, ordering in a restaurant, picking up the phone, or being called on in class. I know about the weeks or even months of dread that may be inspired by having to deliver a spoken presentation.

While growing up, Eric was resourceful in the ways that stutterers usually are. When his fourth-grade class put on a pageant portraying the history of Pittsburgh—our hometown—Eric imitated the speaking style of sportscaster Howard Cosell while reciting his part about the Steelers. Whenever we went out to eat, he would avoid attempting a hard “c” by asking for a Pepsi.

“We don’t have Pepsi,” was the usual response. “Is Coke okay?”


He never went so far—as so many stutterers have—as to order something he didn’t like, or to incur major inconveniences, for the sake of word substitution. In his memoir Stuttering: A Life Bound Up In Words, Marty Jezer describes buying train tickets to Hartsdale rather than his true destination of White Plains, because the letter “w” was his nemesis: “There were no buses or taxis from the Hartsdale train station, but walking four miles home was preferable to stuttering in front of the ticket seller.” Jaik Campbell, a stutterer who does stand-up comedy, once joked that he was performing for the British Stammering Association when a would-be heckler yelled out: “You’re sh … you’re sh … you’re quite good.”

Eric also never went to the lengths that other stutterers have described in order to avoid speaking. “Often I would make myself physically sick so that I wouldn’t have to talk to or be around people,” prominent zoologist and wildlife conservationist Alan Rabinowitz has confessed. “Once I stabbed a pencil through my hand and had to be taken to the hospital so that I wouldn’t have to read in front of the class.”

Still, there was the time Eric was trying to order in a diner, unable to get the words out, when the waitress sighed with impatience and stalked away. There were the phone calls he made, in which he couldn’t respond to someone’s hello and the person who’d answered would hang up, thinking no one was on the line. There were the taunts on the playground: “W-w-what’s wrong w-w-with you? W-w-why can’t you t-t-talk?” There was the time that even a friend—angry after losing to Eric in a basketball game—called him a stuttering monkey.

And there is also one of my worst memories:

My brother and I were with our grandmother at a McDonald’s in Florida. I was eleven and Eric was nine. We had brought our trays to a table when my brother asked me to get him one of the little packets of salt that they kept behind the counter.

“Why can’t you get it yourself?” I asked.

“You go and get it,” my grandmother told me.

“Me?” I said. “He’s the one who wants it. Why do I have to get it for him?”

“You go,” she said again.

I turned to Eric. “Why can’t you get it yourself?”

“Forget it,” he said.

“No, tell me. Why can’t you?”

“Why are you being this way?” my grandmother asked.

“Being what way?”

“Why are you being mean?”

“How am I being mean? If he wants salt, why doesn’t he get it for himself?”

“You know why,” she said.

“No, I don’t.”

“You know he doesn’t want to ask them for it. Because of his speech.”

I looked at my brother in surprise. (I don’t know how to explain, even to myself, the fact that I was startled at that moment. How could I have failed to understand what his reluctance was about?) He was glaring at me and his eyes had filled with tears. He had to take off his glasses to swipe them away. His little paw was grubby and left faint smears of dirt on his face

After my daughter started to stutter, nearly everyone I knew felt compelled to tell me, “Well, it didn’t hold your brother back.” And certainly that’s true. Eric is now married to a lovely and accomplished woman with whom he has a beautiful son. He is respected and successful, a pediatrician and intensive care specialist, and I believe he brings a special integrity and compassion to his work. Though he puts in long hours and is often exhausted, I have never heard him speak to a child without empathy or warmth. No one would have guessed the words that came to him in response to a young patient’s recent remark.

“You talk funny,” the boy told him.

Yeah, well, my brother refrained from saying, that’s not as bad as having Crohn’s disease, you little bastard.

Because of Charlotte’s physical agility, her intrepid nature, and her ready joy, I had assumed a certain social ease would always be hers. That notion has since deserted me, along with certain traits I’d thought inherent to her character. Within days of beginning to stutter, my little chatterbox seemed to go silent. She no longer prattled in the car, no longer supplied the words she knew in familiar books, no longer tried out every new word she heard me say. Suddenly the most commonplace parental request—”Can you say please?”—was laden with danger. (“P-” she began gamely, the last time I tried that. “P-p-p-…”)

What had been the most empowering part of her life—her ever-increasing speech skills—has become something that frustrates and inhibits her. It’s as if her small body has already betrayed her.

Soon after her speech became affected, I picked Charlotte up from preschool and found a bright orange envelope in her file folder. Inside was an invitation to a classmate’s birthday party. Charlotte had been invited to plenty of parties in the past, but never before had it occurred to me to do what I did then, which was to glance through all the other children’s folders—twelve in all. There were only two other orange envelopes among them. And suddenly I found myself in the midst of an anxious little analysis: Okay … it’s not that they invited every kid in the class. Not even close. And we’re not friends with his parents either. So he chose her; he must have. And standing there, I was overcome by a rush of love for this child. A rush of gratitude, even—gratitude to a three-year-old. Of course this was not only pathetic but far from rational: These kids were too young to discern anything amiss in one another’s speech. But somehow it felt like reassurance that Charlotte would continue to be invited, to be included. I went shopping for the birthday boy the very next morning and spent too much on his present.

Most websites devoted to stuttering post a list of famous people who have struggled with the disorder. When Charlotte joined their ranks, I looked these people up and read about how stuttering had affected their lives. A fairly reliable pattern emerged: early on, stuttering was a source of pain, humiliation and inhibition. The famous person was teased, bullied, silenced, estranged. Then an art form or other calling presented itself—usually as an antidote to, or reprieve from, stuttering—and transcendence was achieved. Stuttering is usually cited as the most essential part of this alchemy.

“I was in a play and when I got onstage I stopped stuttering—I couldn’t believe it. I realized that the reason the stutter stopped was because I was acting.” (Bruce Willis)

“The written word is safe for the stutterer. The script is a sanctuary.” (James Earl Jones)

“Animals were the only things I could talk to as a child.” (Alan Rabinowitz)

“I felt so strangulated talking that I did the natural thing, which is to write songs, because I could sing without stammering.” (Carly Simon)

“It’s a funny thing to say, but even if I could, I wouldn’t wish away the darkest days of my stutter. [It] ended up being a godsend for me … the very things it taught me turned out to be invaluable lessons for my life and my career.” (Joe Biden)

“Scatman” John Larkin, a jazz musician and poet who stuttered, referred to his creative shift into scat singing (a vocal art form comprised of random syllables, nonsense words, or no words at all) as a process of “turning my biggest problem into my biggest asset.”

It would seem that as a culture, we are deeply invested in this particular narrative. I can’t count the number of times I’ve heard that everything happens for a reason; that every problem is an opportunity. Those in whom I confided about Charlotte responded much in the same way.

“Maybe she’s meant to do something really introspective, like writing, and this is the experience that will draw her inward,” one of my closest friends suggested. (If an axe had been handy, I might have split open her skull. Writing? A fate I wouldn’t wish on anyone. Inward? This is my boisterous little spirit, who loves to make noise.)

“I’ll just say—without trying to downplay the difficulties stuttering will create for her—that our troubles and strengths are usually interlinked,” another wrote in an e-mail. This insistence—that the affliction and the gift are inextricable—is reflected even in songs about stuttering, even in jokes:

Everybody’s sayin’ that the Scatman stutters,

But doesn’t ever stutter when he sings.

But what you don’t know, I’m gonna tell you right now:?That the stutter and the scat is the same thing.? (“Scatman” by John Larkin.)

A man asks his doctor, “C-c-can you c-c-cure my s-s-stutter?” After a thorough examination, the doctor says, “I’ve discovered the problem: your penis is too big. If you’ll consent to have half of it removed, your stutter should disappear.” The desperate man agrees to the surgery, the operation is a success, but a few weeks later the guy’s back in the doctor’s office. “I can talk with no trouble now,” he reports, “but my wife and my mistress have both left me. I want you to reattach what you cut off.” The doctor replies: “F-f-fuck y-y-you.”

A scene from the week that Charlotte started to stutter:

It is the middle of the night, and I’ve been awake for hours. I’m in bed beside my sleeping husband, staring at the ceiling. It has been a terrible day. Charlotte had trouble with almost every word she said. I’m picturing her in some future schoolyard, surrounded by jackals. Tears are sliding down my face and into my ears.

This isn’t the worst thing; I know there are far worse things. But I’m heartsick and afraid. I can’t bear the thought of other kids making fun of her, the idea of her singled out and set apart. I feel as if I can’t draw a deep breath and can’t get warm. I’m trembling beneath every extra blanket in the house.

When people attest to having received a divine message, they usually describe it as happening during moments like this. I’m not a believer, but in the deep of this night I find myself overwhelmed by a desire to pray. The only way I can ease into the endeavor is to think of it as an exercise: If I were a person who prayed, what would I say? For that matter, what kind of God would I seek to address? Not some omnipotent magician who might lift the curse—that’s so far afield for me that prayers of this nature would feel worse than useless. But what about just … some source of otherworldly sustenance … some current of gentleness and love, to be accessed on Charlotte’s behalf? I lie there trying to visualize this presence and the closest I can come are the faces—some living, some dead—of the kindest and best people I’ve ever known. I try to hold their images in my mind, but they blur and fade and burn out. Before long, I’m left with only a sense of their collective essence, but it occurs to me that I’m not cold anymore. And then toward four a.m., a message does in fact present itself, like a lone hold high on a rock wall, and I close around it and cling for all I’m worth.

The whole world is hurting.

It would be hard to explain the comfort I took from this idea. It went beyond misery’s love of company, beyond an inventory of the ways that others have it bad or worse. It was more like a sudden and visceral conviction that stuttering did not truly place Charlotte outside of anything. In his song “Scatman,” John Larkin says, Everybody stutters one way or the other. It’s not an insight that adversity and suffering are inevitable, no matter who you are; this is something we all know. But like the fact that one day you’re going to die, it’s one thing to know it in the abstract, another to wake alone in the middle of night and know it in your bones.

My parents used to tell my brother that everyone had problems and struggles and pain, whether it was apparent or not. This seemed like just another lie that adults not only told but appeared to believe. Well, I recall thinking, maybe a few other kids do, but most don’t.

It occurs to me that I know better now; that in fact, the reverse is true. There might be a few kids who are truly (and temporarily) untroubled, but most aren’t—and undreamed-of grief can lodge beneath a faultless surface.

I think of the seven-year-old son of my former boss: The boy might have been a poster child for Aryan supremacy. Once I overheard his father talking to him on the phone. You’re a pussy, he told the kid. You’ll never do the right thing.

And there’s the situation related by my friend Amy, who has chosen to maintain an open adoption policy for her two grade-school-aged sons, Samuel and Matthew. Samuel’s family of origin is eager for regular involvement in his life, but Matthew’s biological mother refuses contact with him. Matthew is tall and good-looking and plays several sports. His birth mother’s ongoing rejection of him is a deep and secret sorrow, of which his classmates have no clue. In fact, he looks so much like Amy that no one would even guess that he’s adopted.

I remember a classmate of my own, from middle school: a talented actress even then, with a flair for comic roles. I didn’t find out until well into adulthood that her father committed suicide when she was in the third grade. He hanged himself in the basement, and she was the one who found him.

Then there are the children whose parents are divorcing, or fighting every day, or just mired in separate miseries. Kids with parents who are gone, or sick, or just terminally preoccupied. Children of alcoholics and drug addicts, kids who are abused and neglected. Driving around, listening to the country music that dominates the airwaves where I live, I hear songs about orphans, unwashed and unwanted children, dirt-poor and hungry children, cowards of the county, boys named Sue.

The whole world is hurting.

My husband and I spend a lot of time reading the current stuttering literature, which tells us there are things we can do to help Charlotte. We can slow our own speech as much as possible, pause often, take turns talking and refrain from interrupting. We should try to do all this not only in conversation with Charlotte, but even with each other when she is present.

These changes, it must be said, do not come naturally to me. I talk too fast; everyone has always said so. I cut in when other people are speaking. I ramble and rant.

We consult a speech therapist, who confirms that these changes are difficult, and that they won’t happen all at once. She suggests that we start by trying to implement them for just five minutes a day.

There are other efforts we can make as well:

Hold her gaze while she’s talking, even when she’s having trouble, despite any temptation to avert your eyes.

Resist the urge to supply a word for her, or finish her sentences.

Listen to what she says, not how she’s saying it.

This last directive is startling, and I wonder what would happen if I tried to heed it in every interpersonal exchange. What if, say, I could listen to a friend’s relentless stream of self-promotion and instead of hearing him say that he’s the greatest, I could hear that he needs affirmation more than he does his next meal?

With the therapist’s advice in mind, I decide to try this for just five minutes a day. The effect is immediate and profound. Right away it’s less manifest that people are power-hungry and greedy and obnoxious and hostile, and more apparent that the whole world is hurting.

On that list of famous people trotted out by the stuttering community, there is one man without a whiff of gratitude about him, and that is John Melendez of The Tonight Show (formerly known as Stuttering John during his time with The Howard Stern Show). In a wildly ironic inversion of the usual scenario, Melendez was one of Stern’s many interns when he was chosen—sight unseen—by the master provocateur to conduct celebrity interviews. (“He stutters?” Stern said. “Hire him.”) Stern was delighted by the possibilities posed by a stuttering interviewer: the tension inherent in every exchange; the idea that celebrities would be afraid to look heartless by snubbing him; its consistency with the “freak factor” that is the show’s trademark.

“Stuttering’s a great defect for radio,” Stern mused on the air to Melendez the day the latter joined the team, “because obviously, we have a guy with no arms or something, no one can see it and … only we enjoy it here in the studio, but stuttering … we always wanted a stutterer. I mean … you’re priceless!”

And Melendez did not disappoint. While on camera, he peppered dozens of celebrities with insulting questions, asking Oliver North if he’d ever had a nightmare where his penis got caught in a paper shredder, Gennifer Flowers whether she would be sleeping with any other presidential candidates. To Imelda Marcos: “If you pass gas at home in front of others, do you blame the family dog?” And to supermodel Claudia Schiffer: “Who’s smarter, Christie Brinkley or Forrest Gump?”

I’m not sure why, among the dozens of other famous people on these lists, Melendez was the one who mesmerized me. Maybe it’s that my brother’s experience of stuttering is the only one I’ve witnessed intimately, and his main response to it seemed to be anger, and John’s chosen line of work was arguably an angry thing to be doing. Or it could be the fact that Melendez is one of the only celebrities who has stuttered mightily in the public eye. Those who identify stuttering as a gift tend to do so in fluent voices; they are usually the ones who have “conquered” the disorder, at least to the extent of controlling it on camera.

On Melendez’s website, along with his bio and blog and event calendar, is a list of tips for stutterers. Over the past several months, I’ve seen many such lists, without much variation among them. But Melendez offers tips that I haven’t read before:

“Know in your heart that whomever you are talking to is no better than you.”

“Laugh at it, let people make fun of it … don’t let it define you, it’s something you do, it’s not who you are.”

And perhaps the one that is most interesting to me: “Get angry in your mind when speaking.”

Late one night, researching Melendez online, I stumble across an interview he did for a radio program called Stuttertalk. Has every parent of a child with a “challenge” flashed on their own version of this fantasy? Let’s find a place where everyone stutters; let’s move there immediately. This channel creates an illusion that there is such a place: Let’s call it The Isle of Stuttering. Everyone on it stutters: the moderators, the guests, the voices on the promotional clips. As on any other radio station, there’s a little riff where a succession of guest stars introduce themselves, saying some version of: This is J-j-joe Blow, and you’re l-l-listening to Stuttertalk. Most dramatically, one woman says, “This is…” and more than ten tortured seconds elapse before she is able to say her name. In this interview, the show’s two stuttering hosts talk at length with Melendez. Listening in the dark to three stuttering voices feels a little surreal, even a little eerie, as if I’m standing in the shadows beside some house on the Isle of Stuttering, eavesdropping beneath the kitchen window.

Toward the end of the interview, Melendez is asked whether he has ever used his stutter to help him pick up women. He seems truly bewildered by the question and says no, if anything it has been a hindrance to picking up women.

The next query, by now, seems inevitable to me.

“John, do you think of your stuttering as a gift? H-h-has it been a gift in your life?”

“A gift?” John repeats. His tone is half incredulous and half uncertain, as if he suspects he has heard wrong, or maybe the host is putting him on.

“Yeah,” his interviewer persists. “A gift.”

No,” he says. “I think it’s a handicap. The truth is, if I could trade in and say, you know, let’s start again, and I’ll be twenty-three again and … here’s my choice: I could be Stuttering John, or I could just speak fluently and go on in my life the way that I would want to—I would choose speaking fluently.”

Ah, I think. Finally.

Having said all this, let me say as well that I wouldn’t choose John Melendez as a role model for Charlotte. And I’m glad that so many inspiring people have wrested something redemptive from their struggles with stuttering.

But I don’t believe everything happens for a reason. I don’t believe every problem is an opportunity, or at least, an opportunity worth the price. And I think that stuttering is unmitigated misery for the majority of those with the disorder. The truth is that if I could choose either happiness or greatness for Charlotte—not that they’re mutually exclusive, and not that the choice is mine—but if it were up to me, and it could only be one or the other, I would want her to be happy. I don’t have any reason to doubt that she’ll eventually be all right. But I want her to be happy now; I want her to have a happy childhood.

Of course, this isn’t up to me either, at least not past a certain point.

Whenever I’m asked whether I see the proverbial glass as half empty or half full, I like to say—truthfully—that I see it as half empty and half full. And so I take a certain satisfaction in this same equivocation from the collective stuttering community. I’m glad that Joe Biden and his ilk are there, and I’m glad that John Melendez is there. And I can even concede that stuttering has already offered me some benefits as a mother: a different way of speaking and hearing; a deeper apprehension of the fellowship of suffering; the understanding, finally, that the point of parenting is not to forever keep adversity at bay for one’s children. The point, I believe—one of the most important points, anyway—is to help one’s children feel at home in the human family.

Not long ago, my husband said something that—in its very simplicity and self-evidence—seemed to me as lovely and wise as anything I’d ever heard. “We will do everything we possibly can to make this go away,” he said. “But if it doesn’t, then we’ll live with it.”

If Charlotte ultimately feels that there’s no silver lining to stuttering, if it offers her not a shred of transcendence, I want her to know that’s all right. And if, on the other hand, she comes to regard it as a gift—one that was given to her for a reason—I devoutly hope I’ll have the grace to stay out of her way.

Someday, in any case, she’ll have made her own way with it. She’ll tell me how it is. And I’ll be listening.

Author’s Note: Although my brother’s struggle with stuttering was a part of everyday life within our childhood home, he and I didn’t talk about it very often. Writing this essay gave me a chance to ask him intimate questions about this very formative experience. I know that it wasn’t easy for him to revisit some of the territory we covered, and I am deeply grateful for his thoughtful and candid answers.

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A Flair for the Dramatic

A Flair for the Dramatic

By Aaron WhiteWO Beating Outside my heart Art


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.


 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.


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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Not a Scary Story

Not a Scary Story

By Kimberly Ford
summer2011_fordFrom where I sit most afternoons, on the second-floor library of my son’s new middle school, I can look out the bank of windows to the outdoor courts where Will practices basketball with his sixth-grade team. Will’s coach recently said, with a note of surprise in his voice, “You sure are one tough kid.” The coach may have been surprised because my eldest loves nothing more than math and reading. He thinks for long stretches before he speaks, an angelic look on his face. But put the kid in at point guard and you’ll rack up a couple of fouls for the good guys.

But then, this kid is surprising in a lot of ways. One Monday afternoon, a few months ago, Will and I—his younger sister and brother home with a sitter—piled into the car to see our beloved Dr. Greene. Will had been thirstier than usual. He’d been waking up to pee—five times a night. Dr. Greene is seventy-one. I’ve known him since I was four. He is levelheaded and calm and charming. I assumed this Monday would bring a little chit-chat, Dr. Greene in the bow tie he always wears, before something like, “Waking to pee? How about no liquids after seven.”

Instead, after Dr. Greene had asked about me and the kids and about Will’s basketball season and what he was reading, my favorite doctor sighed. He sat back in his chair and said, “Kimber, there was sugar in the urine sample.”

Which is when you have the first inkling that your life is going to change and that your kid’s life is going to change. You look at your twelve-year-old, who’s sitting on the high examination table looking very tall and very large but still kicking his size-nine feet like he’s six years old.

Your son asks, “What does ‘sugar in the urine sample’ mean?” and you feel sick because you can’t answer that question, and you don’t know how Dr. Greene is going to answer it, and given that your boy is sitting right there, you can’t ask the questions you want to: about longevity, about life expectancy. At this point, Dr Greene explains to Will that this really only means that he’ll have to have some blood drawn. It’s Dr. Greene who sends the order and who tells Will that sometimes sugar in the urine means the pancreas isn’t doing its job. It’s Dr. Greene who squeezes your shoulder on your way out and smiles, and it’s Dr. Greene who does not say what you want him to, which is that your firstborn is completely fine.

Dr. Greene, in fact, calls less than half an hour later, just after you’ve walked through the door and into the kitchen and begun browning the ground turkey for the tacos.

“Kimber,” he says. “Sounds like you’re cooking dinner. Are you cooking dinner?”

“Yes,” you say. “Tacos,” as if this is important.

“Here’s what I need you to do.  I need you to go into another room where you can be alone for a minute.” And because adrenaline makes your hands and feet and scalp tingly, and because this does not sound good, you walk not into the dining room where the kids might hear you over the TV they’re watching, but upstairs and, for no good reason at all, into your youngest son’s bedroom.

There, Dr. Greene tells you that Will’s blood glucose level is 906. Nine-hundred-six means nothing to you then. Even when Dr. Greene says in a clear, calm voice that normal is about one hundred, the numbers mean nothing. Your pediatrician’s tone is what makes your hands and arms and shoulders start shaking. You stand there, and your knees also begin to shake when Dr. Greene tells you that you need to take Will to the hospital. Right now. You are standing with the phone pressed to your ear, wearing a slim gray skirt and high heels, and when he says he’s already arranged for a bed, you realize that a skirt and heels are not at all what you need for a night in the hospital. As he says, “Bed 302” and “North Wing of Packard,” you kick off your heels and unzip your skirt. There in your youngest son’s bedroom, the one with the dormer windows and the low, angled ceiling, you stand shaking, thinking that yoga pants are what you need for the hospital. You pull down and step out of your skirt and underwear. Dr. Greene repeats “302” and “North Wing” as your husband opens the door to your youngest son’s room. Your husband’s eyes widen. You are standing there with the phone to your ear, visibly shaking. His expression grows quizzical, a little alarmed maybe, as he stares at you, there, in your black sweater and nothing at all from the waist down.

But here’s the good thing. Your husband, Bill, heads back downstairs to tell Will, per Dr. Greene’s last instructions, to stop eating anything he happens to be eating. You follow in your black yoga pants and your black sweater, you and your husband ready to tell your three kids that actually, you need to head on over to the hospital. You worry there will be wailing and crying and small ashen faces. The amazing thing? Your three kids seem to think this is … exciting! Will, who is sitting at the breakfast bar and who feels totally fine, grins at you, curious, like this is some kind of joke. Your daughter, your worrier, gapes from you to your husband and then to her older brother who pretends, then, to faint. Will slumps over onto the countertop, his sister yelling, “That’s not funny!” and you laugh, and your husband laughs, and your worried daughter laughs along with you because this is actually very funny.

And here’s another good thing. It’s clear from the beginning that both of you—both mother and father—are going to the hospital. You need to be there—both of you—for your son, and for each other. So you do what you need to: You think of your mother, who lives two miles away but who is a psychotherapist working eight to eight, six days a week and who is not available on short notice. You do what you’ve never done before: You call her office, and when you get her machine you hang up and call a second time, a third, then again. You imagine her seated in her wing-backed chair across from the little, red answering-machine light that flashes at an incoming call. Your mother might take you for a desperate client who can certainly wait until the end of the current session. She might think you are the most persistent of solicitors. Instead, your mother excuses herself to the client seated on the couch. She crosses the room and picks up the phone, and you say, “Mom?” and she says, “Hi. I’m here with a client,” as if to underscore that she is not, in fact, available. You say, “I’m sorry, but we have to take Will to the hospital. I need you to come over here.” Of course, you could have called a neighbor. Any number of friends would have been more than happy to help. But your younger children will be less worried with the grandmother they adore. You will be less anxious if it’s your mom who is with them. Neither you nor your husband will have to come home in the middle of the night to relieve a friend who has kids of her own at home, and you’re sorry about the client, but the client will just have to understand that the night has come when you’re about to drive your kid across town to the hospital, and the client will just have to accept the fact that the people you love are going to step up.

The nights in the hospital—there are three—are long. That first night, no fewer than four endocrinologists will explain the situation: The pancreas makes insulin, the hormone that allows the body access to the glucose it needs to survive. Your son’s pancreas is no longer producing enough insulin. What they tell you, each in turn so that you can maybe just begin to understand, is that you will essentially have to become your child’s pancreas to gauge needed amounts of the hormone and to deliver those hormones to keep him alive.

It will be nine o’clock, then ten, then eleven, and you will not think, until days later, of how the idea of going to the emergency room used to sound so terrible because it always seemed like something that had to be done at night. The emergency room seemed awful because you, for one, are exhausted by nine. You are almost always asleep by nine-thirty.  The idea of leaving the house after dark means not getting into bed on time, which means not being able to wake up before the kids the next day to enjoy that perfect hour alone, just you and your coffee.

At some point around two-thirty in the morning, though, when your son has been given insulin and his blood glucose has dropped to 506 and he has finally fallen asleep, you will not feel tired in the least. You will feel the need to step out into the hallway. Not because you actually need to check something on your phone, which is the excuse you’ve made, but simply because you need to step out of the room. You will walk into the hallway, and there will be your nurse, a young woman with pretty, dark hair named Erin who has had Type-1 diabetes since she was a kid and who seems healthy and kind and empathetic and who has just had a baby of her own, which instills hope that your kid might have a normal life and that Julia Roberts’s premature, post-partum demise in Steel Magnolias is not the fate of every single person with this disease.

Erin smiles at you in a way that says she understands exactly what you’re going through because, in fact, she does. She asks if you’d like a cup of tea, and you didn’t know before you stepped out into the hallway, but you do want a cup of tea. When Erin leads you to the alcove stocked, especially for parents, with graham crackers and saltines and the tea and the coffee you will absolutely need five hours from now after you’ve gotten no sleep, the little alcove and the comfort of such an empathetic person seem like a miracle. Erin says, “Can I do anything else for you?” and you shake your head and say, “No. Really. Thanks.” Then she says, “This is hard. It’s really hard. But he’ll be okay,” and you believe her.

It’s actually a little harder to believe Erin by the next morning. Not because you haven’t slept at all, but because your son starts to feel bad. It turns out that in some kids, when insulin lowers blood glucose from a life-threatening 906 to a more normal 68, the process can be uncomfortable. Your poor kid spends the whole first day in the hospital vomiting.

One of the things Bill and I learned that first day is that when you are diabetic and verging on ketoacidosis—when blood is overly acidic because the body has begun to digest its own fat stores—vomiting is not good. After Frosted Flakes and apple juice and sugar-free root beer went down and came back up, after several hours of Will throwing up yellow bile, an IV was put in his arm and he was finally able to sleep. By the end of the first twenty-four hours, he kept down half a cup of Rice Krispies. Then a soft white roll. Which meant it was time to begin what we needed to do—master the understanding and management of an extremely complex disease (there would be an exam!)—before we would be allowed to leave the hospital. I have a B.A. and an M.A. and a Ph.D. Never before had I been such a good student. By the second morning, Will and Bill and I were calculating the number of carbohydrates in the foods Will liked to eat, measuring his current blood glucose, drawing up insulin from glass vials into syringes and injecting it into the skin of his belly so that our son might have the exact amount of insulin his body needed to release glucose from his bloodstream into his system.

At some point in the high-stakes studying and care-giving and the large-scale acceptance we were having to undertake, I got a headache. I needed Tylenol, and they had it in the gift shop. I dreaded the trip. The children’s hospital gift shop, I was sure, would be horribly depressing, full of carnations and baby’s breath, Mylar balloons and mawkish greeting cards for critically ill children. Instead, its shelves were lined with colorful books and wooden toys and an array of art supplies that rivaled our local toy store. In the middle was an enormous display of stuffed animals that reached all the way to the high ceiling. Will is the only one of my three children who has ever liked stuffed animals. It always surprised me when a kid who was so athletic and so cerebral would get so excited about the stuffed raccoon my parents gave him for his sixth birthday or the plush bunny in his Easter basket when he was eight. I walked around and around the display, taking out animal after animal to feel the fur and to be certain the eyes weren’t too sad. All the while, I was sure that my twelve-year-old son would think this was stupid. He had just started middle school, his feet had just grown two sizes larger than mine, no one had dared give the kid a stuffed animal in years! Finally, I chose a fox with a velvety body and a wise face whose smile was heartening without being goofy. I swallowed my Tylenol at the cashier stand without water and hustled back to the room with a cup of tea in one hand and a glass of water for Bill in the other, the fox tucked casually under my arm.

Will sat forward from the raised back of the bed. He held both hands out. “Awww,” he said, and actually laughed a little. “Is that for me?”

I nodded. Bill handed the fox to Will who hugged it to his bare chest.

“He’s so soft,” he said.

Bill asked what he was going to name it, and Will said, “I don’t know. Maybe Mr. Fox. Mr. Fox sounds good.”

And I realized that just as Bill and I were beginning to fret about our son’s growing up and leaving us forever, just as he’d started to think maybe it wasn’t that cool for us to pick him up on campus or that certain colleges across the country sounded interesting, this disease would mean more communication and more understanding among the three of us. Diabetes meant we would get to hold him a little closer for a little longer.

*   *   *

Not that any of what we learned in the hospital felt like anything other than torture. Case in point: shots. No one likes shots. The idea of my son having to inject himself four to five times a day, every day, for the rest of his life, seemed like more pain than I could comprehend.

Enter my sister. When Bill and I called my mom, who cancelled her clients for the next three days, my mom called my sister. My sister, who lives forty minutes from us, on the other side of the San Francisco Bay, packed up her one-year-old, cancelled the nursing shift she was supposed to work the next day, said adieu to her husband, and came to stay with Aidan and Quentin until Bill and I could get home. Once Will had begun to feel better after that long first night and Bill and I had begun to understand hypoglycemia and lipohypertrophy and ketoacidosis, I decided it was time to run home to see my younger kids.

Who meets me at the doorstep but my sister, the nurse practitioner.  In her hands are the syringes and vials of saline she’d bought at the pharmacy. With my giddy younger son and daughter at her sides and her own toddler on her hip, she announced that we were going to “inject each other!” My eight-year-old, full of nervous laughter, was so animated that he had a hard time drawing up the saline, but the kid had surprisingly little trouble popping the syringe into my belly. My daughter giggled through a self-injection. My mom—doubled over with laughter—poked the needle right into her stomach but was so keyed-up that she yanked it back out instead of holding it there for the requisite count of five, which seemed—to my little ones—like the funniest thing their grandmother had ever done.

My mom and I have always been close. My sister and I have always been close. On the drive back to the hospital that second day I had a good cry. Not because I was sad, but because I was moved. The three of us had been drawn, by my son having developed a disease, that much closer.

Of course, with this kind of medical situation, there are plenty of tears, and not all of gratitude. You will cry, and your kid will cry. And this—watching your twelve-year-old cry—is harder than measuring out strawberries on the new kitchen scale you buy because you want to be precise about the number of carbohydrates that you need to “cover” with exact dosages of insulin. The tears come, we have found, on Sunday nights, the eve of a new school week, or on the last night of winter vacation when we are all reminded—by a new beginning—that Will’s diabetes isn’t going away.

The sadness, though, is balanced by moments like the first day back to school after Will was discharged. The first day back, of course, happened to be the basketball team’s end-of-season party, replete with the cupcakes and juice that Will and I needed to attempt to “calculate” and “cover.” The team gathered around a picnic table, Coach King just beginning his commentary on the season, my son back with his gang. When he took out the small, black nylon case holding the blood glucose monitor, the other nine boys grew still. He pricked his finger then squeezed it with the other hand, waiting for a large enough drop of blood to collect. In that moment I worried that Coach King had slowed in his comments. I worried that Will was embarrassed by all the staring. I thought maybe he should have checked his blood glucose level over by me, away from the table.

At which point there came, “Cool!” from the boy next to him, one of his best friends. Will grinned at Rory. He wiped his finger on his friend’s navy blue uniform, and Coach laughed, and the boys laughed, and Will beamed. He might have ended up the happiest of them all, once he and I realized that we’d overestimated the number of carbohydrates in the snack and had injected too much insulin. His blood sugar had gone low enough that my son—none of his teammates holding it against him in the slightest—was the only player who had to have a second cupcake.

So, no, I never imagined, when my eldest child graduated from elementary school and started at his new middle school down the street, that I would be on campus every day at 11:50 to help him count the number of carbohydrates in his lunch and inject the exact dosage of insulin. I would have been angry if you’d told me last year that the novel manuscript I was close to finishing was going to be tabled for months while I became an expert at managing a complex disease I barely knew existed before Dr. Greene’s phone call. I would have been full of dread at the number of nights you told me I’d have to spend waking up to check two a.m. blood sugars. I might have been resentful if I’d known the number of days I would have to rush back to school because Will had run out of testing strips or felt “low” and the nurse’s office was locked and he thought he’d left his monitor in the art room but the art room was locked, too, and could I please come over with the spare monitor?

What I wouldn’t have known last year, because I was worried about my children in only the most abstract and dire of ways, was that there is real joy and real satisfaction in sitting here on the second story of the library. Being at my sixth-grader’s school every day was never the plan. But where I sit now, spending all afternoon at school even three months after he was released from the hospital because the baseball season is upon us and there’s no way to know how a new sport will affect his blood glucose levels, I get to watch my son walk back from the cafeteria, talking and joking with friends. I know Will better than I might have, because of his disease. I know his friends better because they come into the nurse’s office at lunch with him and they wave to me and they call me by my name and ask if they can have a roll of the Smarties they know I always carry in my bag in case Will’s levels go too low. These are the same boys who noticed one morning that Will was talking fast and slurring a little and walking “kind of funny” and that maybe he should check his blood glucose. When the number was a dangerously low 38, they were the ones who had him eat some of the candy he always carries in his pockets, one running for the nurse while the others walked him into a nearby classroom until Will showed he was fine again.

Will’s diagnosis on November 30 meant that I got to ask, on the last afternoon of spring break, “So, think you’re ready to do lunchtime injections on your own?” At which point I felt a surge of affection and love—not what I thought I would feel—when he said, “Actually I think I still need you.”

What I didn’t know last year, but I do know now, is that when the reality you don’t want becomes yours, there’s plenty of good to be had.

Author’s Note: Seventeen months after diagnosis means that life is a lot easier. I am no longer at school every day, but I make plenty of drives over when Will’s blood sugar is 389, or his pump site has been yanked out during soccer or he has run out of testing strips. Seventeen months out, there is still plenty of worry and time spent calculating and administering medication, and there are still tears.

I was, however, lucky enough to recently become VP of Research for the Greater Bay Area Board of Juvenile Diabetes Research Foundation, the leading funder of research toward finding a cure for Type-1 diabetes. What my role gives me is direct access to hope. I pass this hope on to Will almost daily.  Last fall I passed some of it along to his new friend, eight-year-old Owen, who, when I asked how long ago he had been diagnosed, said:  “Eight months, three weeks, and … six days.” Just last month I passed that same kind of hope along to eleven-year-old, newly diagnosed Carter. When I told him that JDRF was going to find a cure, Carter spoke to everything you need to know about the real difficulties of Type-1 when he said, “Please, please hurry.” 

Updated Author’s Note: When I heard that the inimitable Brain, Child was going to feature “Not a Scary Story” four-and-a-half years after Will’s diagnosis, I got pretty fired up.  I would write a quick comment about how much EASIER life is.  My eldest is SIXTEEN, a sophomore soccer player who is thriving. Still, two nights ago I checked Will at 1:47 a.m. for the second time that night to find his blood glucose was 38.  I could not have been more worried racing down the stairs in the pj bottoms I sleep in, panicked at the question of how long he’d been so low, at whether or not he was going to seize, of what I would do if I got back upstairs and he was non-responsive.  He hasn’t been 38 since the afternoon I wrote about in the “Story.”  He ended up being just fine . . . after three blood glucose checks, at half-hour intervals through the night;  and more than a little worry on the part of his mom.

Kimberly Ford”s fiction, reviews, and essays have been published in The Believer, Redbook, Mothering, The Threepenny Review, and Brain, Child. Her best-selling non-fiction book, Hump: True Tales of Sex After Kids, was published in 2009. Her short story “Generation” was named a Recommended Story in the O. Henry Prize Stories 2008.


Brain, Child (Summer 2011)

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The Richest Person in the World

The Richest Person in the World

By Adrienne Jones

Jones_BMMom! I have an idea for Valentine’s Day. Let’s get candy coins. You know, those chocolate ones? Then I’ll give them to everyone because I have so many people to love and that makes me the richest person in the whole world. Get it? I’ll give them candy money because I’m so rich!


Mom? Is that a good idea?

Mom! Why are you crying?!?

I’m about the least sentimental person this side of Spock, but those words from my 11-year-old son’s mouth hit me right in my middle. I’m the richest person in the world because I have so many people to love from any child would be wonderful. From this particular little boy, it is miraculous.

Carter was born the very unhappiest baby who grew into the very unhappiest toddler and the very most anxious preschooler. By the time he started school, he had a list of diagnoses as long as his arm, none of which seemed precisely right, and although some of those diagnoses were very big, adult, and scary, they didn’t quite capture the long crisis our lives had become. A few months before Carter turned 7, I had begun to lose hope that he would ever experience any happiness more meaningful than the momentary excitement of a new toy.

What we know now but didn’t then was that Carter suffered a prenatal hypoxic brain injury that impacted his brain from stem to stern. He has a sleep disorder so severe that, when unmedicated, he sleeps every other night, only succumbing to slumber when his body is finally powerless against overwhelming exhaustion. He has hypotonia (low muscle tone) and is weaker on the right side of his body than his left.

In spite of all that, the most arresting reality of life for Carter and all of us who love him was, he was miserable. He suffered seizure-like rages during which he begged me to kill him or have him arrested. He tried to throw himself out of the car on the freeway. I restrained him when he tried to hurt himself and dragged him off of other children when he tried to kill them. My husband and I slept in shifts so we could supervise our wakeful, terrified son. Carter lived like a dervish: never playing, never sitting, rarely smiling. He was a blur of disorganized, frenetic activity, terrified of everything and enjoying nothing.

These days, Carter gives me full permission to tell the stories of those years in any way I like, but he rarely discusses it himself. He can’t bear to think about it. By that fall, he had developed psychotic symptoms, we had removed him from public school because the staff wouldn’t stop punishing him for crying all day, and finally, we got an appointment with a pediatric psychiatrist.

That pediatric psychiatrist was Dr. S, and we had a good many more chaotic months and terrifying experiences ahead of us, but it was a turning point nevertheless. She was not the first professional to listen to us and take Carter’s problems seriously (though there were plenty who scoffed and dismissed me as an over-anxious mother), but she was the first one who took us seriously who was also qualified to help. It took months to find a drug combination that helped Carter sleep and eased his psychosis and rages, but knowing Dr. S was there, working with us, caring about Carter, and available by phone gave me hope.

Then came D, a new therapist, a young guy who looked at my son and saw not a diagnostic puzzle to be solved or a series of symptoms to be squelched, but a child with whom he could develop a relationship. Carter, always a cautious soul who loves his inner circle completely but is very careful about who he allows into that circle, trusted D in a matter of weeks. D was the one to break the news to me that Carter was delusional and hallucinating, and he was the person who stayed on the phone with me for an hour while I cried over this information. Through the fall and winter of 2009 and into the early months of 2010, he answered my questions, lent me books, and lit up with genuine happiness when he greeted Carter. He assured me over and over that, should we need to hospitalize Carter, he would spend time with him every day, and while we never did have to admit our little boy, the knowledge that D would be next to us if that happened was immensely reassuring.

As we began the slow, uncertain journey to stability (an improvement we were never quite confident about until Carter’s illness had been receding for over a year), we were gradually adding new people to our lives. First came a small support group for parents of children with serious mental illness (never underestimate the power of the presence of people who understand your experience). Next, a new school for Carter, a tiny community of children with special needs and their dedicated teachers where my son feels safe and confident enough to learn, and where he has developed his first genuine friendships. Finally, a new faith community, where most people don’t really understand but everyone is willing to listen. Soon, we’ll embark on a brand new adventure when Carter becomes a Special Olympics athlete.

Perhaps all of that sounds a little flippant, like an old fairy tale where everything was dark and scary and suddenly the sun came out and surprise! Everything is wonderful again! In fact, the road to the relative stability we enjoy has been bumpy and profoundly difficult. Our lives are, and will remain, more challenging than they would have been had Carter’s brain not been injured. In spite of all that, Carter really is the richest person in the world because he has so many people to love.

Well, maybe he’s the second richest person in the world and I’m the richest, because I get to be his mom. I got to help him buy chocolate coins and make Valentine’s cards for all the people he loves and who love him in return, and for the mom of the boy who was once filled with little except fear and rage, well…

I think I have something in my eye.

Adrienne Jones lives in Albuquerque with her husband and children, and in the early hours of the morning, just before dawn, you can find her at her desk in the little office next to the kitchen, writing stories. She blogs at No Points for Style [nopointsforstyle.com].

Parenting Multiple Children, When One Has Special Needs

Parenting Multiple Children, When One Has Special Needs

By Adrienne Jones

0-13I was in the waiting room at my youngest son Carter’s therapist’s office in January 2011 when my cell phone rang. I answered and heard the voice of Jacob, my 18-year-old son, his voice choked with fear and pain, telling me that he couldn’t find a job. “I put in tons of applications and I didn’t even get a single interview! You know how bad I’m doing at school, but I really, really tried last semester, Mom. I don’t even think I can graduate this year. I’m going to end up working at fast food restaurants my whole life.”

He began to cry, and I was broken hearted at the despondency in his voice. I wanted nothing but to sit down next to him and reassure him, then help him explore options. I wanted to be with him, to be his mom.

Just as I began murmuring words of love and support (You are smart. We’ll find something. I’m here to help you.), Carter’s therapist tapped me on the shoulder. He had the look on his face that I dread, the one that tells me life has to pause for awhile so I can keep my youngest son safe. My littlest child, the one whose brain got broken before he was born, the one who we all love deeply but who needs much more than we can give.

The one who stole two kids’ mom and one kids’ stepmom.

When Carter’s therapist tapped my shoulder, I froze for a second. This child, or that one? I cannot meet both needs, yet both needs are urgent.

“Jacob, I’m so sorry, but I have to call you back. I’m at Carter’s appointment and his therapist needs to talk to me.”

“Whatever, Mom,” and the phone was dead in my ear.

I’m not quite sure when Jacob’s patience ran out. He was eight when Carter was born and as Carter cried through his first year, Jacob was frustrated. While Carter cried through his second year, he began to get angry. When I began to crumble emotionally during Carter’s third year, Jacob began to develop a resentment that only grew as his brother got sicker and I was less and less available for homework help, dinner cooking, and even simple conversation.

These days, I take Carter to about 100 appointments a year, including lab draws. In his early years, I took him to three times as many, often dragging another child (or 2, or 3) along with me because babysitters were in short supply. They rode to appointments to the sound of their brother’s screams, they sat in boring waiting rooms and tried to occupy themselves with books and games, and they rode home while their brother continued to howl in his carseat.

They asked me for help with homework and I tried to give explanations, Carter in a sling on my chest and wailing so loudly that I had to shout my descriptions of what adverbs do or how to solve for x.

I was at the psychiatrist’s office with Carter when my daughter Abbie (13 at the time) called me from home. “Mom, I think I broke my leg! Please, can you come home Mommy? Please? I really need you,” she begged from the place in our driveway where she had fallen.

Of course I went to her, but her pleading had torn something in me. A child who is hurt should not have to beg for her mother’s presence; her mother should come running. Her fear that I might not come shocked me.

Parenting multiple children tears parents in many directions sometimes, even if all the children are healthy and developing typically. When one or more of the children has out-size needs, though, the parents must make out-size decisions, and the children must make out-size sacrifices (often unknowingly and unwillingly).

During his first three years, Carter was virtually inconsolable by anyone but me (and even with me, he cried hour after everlasting hour), so my older kids missed my presence at their plays, band concerts, and games. I skipped Parents’ Night at school, or left early because Carter was disruptive with his screaming.

During Carter’s preschool and early school years, they missed having a mom because I was exhausted to the point of near collapse for weeks and months at a time. They stayed home alone too often because it was better than dragging them along to yet more long, boring appointments. Throughout it all, they lost sleep because Carter has severe sleep issues and until recently (and sometimes, even now) he was never awake and quiet at the same time.

Carter has been relatively stable for almost three years now, and in that time I have begun working to repair my relationships with my other children, but much damage, much of it likely irreparable, has been done. They lost their mom during some crucial years of childhood, and while I always made sure they had food and clothes, got to school on time, and saw the doctor and the dentist, I was not nearly as available to them as I was before their brother came.

People often reassure me that kids are resilient; that there are benefits to having a sibling with special needs that have yet to reveal themselves. Perhaps. I hope so.

But I also know that sometimes, the fallout from a family crisis reaches very far, much further than we can imagine when we are in the midst of the crisis. I don’t know the solution; even now, thinking back on those years, I don’t know what I could have done differently. I only hoped I could meet all my kids basic needs and keep Carter alive, and by those very basic standards I’ve been successful.

All I can say to Jacob and Abbie and my stepson Spencer is, yes, it was hard, and it’s still hard. I hear your pain, and if I can help you heal, I want to do that.

And still, even now, I have to take Carter to his appointments. I have to stay with him most of the time so that his emotional life is steady. If I can help heal you, I have to do it in the in-between. There is more of that now, but it is still the in-between.

I failed, but I promise I tried to choose all of you.

Adrienne Jones lives in Albuquerque with her husband and children, and in the early hours of the morning, just before dawn, you can find her at her desk in the little office next to the kitchen, writing stories. She blogs at No Points for Style [nopointsforstyle.com].

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Have a Nice Trip

Have a Nice Trip

By Jill Cornfield

hollandartwebIf 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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Informed Adoption for National Adoption Month

Informed Adoption for National Adoption Month

Nutshell logoThree years ago I wrote a feature for Brain, Child called “The Myth of the Forever Family,” which examined adoption disruption—when adoptive parents decide they are unable to parent their adoptive children. Part of the article discussed the underground re-homing movement, specifically quoting two posts from adoptive parents asking people to take their children from the group Christian Homes and Special Kids (CHASK). Movement from family to family like this often happens underground via yahoo group or online message board, out of reach of agency homestudies or social work visits.

Recently a series of articles published by Reuters, The Child Exchange: Inside America’s Market for Adopted Children, looked at the phenomena of re-homing in terrific detail, highlighting the risks for these vulnerable children as well as the lack of post-adoption support, which could make these disruptions less common. Children who are sent to through these underground networks are sexually, physically and emotionally abused.

Now, just in time for November’s Adoption Awareness Month, the Evan B. Donaldson Institute (America’s adoption think tank) has released a 176-page white paper, A Changing World: Shaping Best Practices through Understanding Of the New Realities of Intercountry Adoption, which addresses concerns about international adoption, disruption, illegal re-homing, and the needs of the children in question.

The report highlights the importance of helping countries keep children in their countries of origin whenever possible and when that cannot happen, internationally adopting families should have a great deal of pre-adoption education and post-adoption support. Currently, many agencies pay lip service to educating prospective parents on the special needs of adoptive kids but do very little in the way of real training and do even less when it comes to supporting families post-placement. As the report states, nearly half of all adoptive parents who adopt overseas end up parenting a child with special needs although only a quarter of them realize this pre-adoption.

Many families go overseas to adopt with the understanding that they will be able to avoid some of the challenges of domestic adoption. They hope that there will be fewer birth family complications, a clearer timeline and more control over their choices (a boy or a girl, a child with a physical disability or not, etc.). But as the report states, international adoption has its own unique challenges including the possibility of adopting a child who was trafficked and who was not legally free to adopt, a child whose health history is unknown or deliberately hidden, or a child who was abused while in care. Too, children who spend time in orphanages have institutional behaviors that require a different kind of parenting. They may be developmentally delayed, have feeding challenges or have problems with attachment.

Domestic agencies who serve hopeful families here in the states to adopt internationally may collude with unscrupulous brokers overseas or they may know as little as the adoptive parents they serve. Some downplay the problems that most internationally adopted children have or do little more than recommend books for families to read beforehand. Once the children are home, most agencies offer nothing in the way of support.

Potential adoptive parents need to be smart consumers, researching the agency, the state of adoption in the country of origin, and identifying the support in their community before they adopt. For example, a family lives in a rural community where there is little in the way of special needs services; they may need to reconsider their adoption plans given the likelihood that they will adopt a child who will need those services.

These are difficult conversations to have and potential adoptive parents are sometimes so enamored with the idea of adoption that they have a hard time hearing the potential pitfalls. The responsibility then falls to the agencies who are placing the children.

Social workers who do homestudies and therapists who help families make adoption decisions need to be firm and direct in order to best serve those families as well as the children who may arrive. Families need to be screened more carefully and a safety plan should be in place, addressing what the family will do if they begin to feel overwhelmed, where they can ask for help, and to identify their local community supports.

Hopeful parents also need to understand that children who have faced tremendous loss and trauma usually have challenging behaviors. This does not make them damaged goods; it makes them children who need more loving support and parents with the skills to parent them. We must understand that the children are ultimately innocent parties to a complex, sometimes corrupt and always difficult system. Children who act out or struggle post-placement have the right to have their challenges understood and appropriately treated.

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Learning Autism

Learning Autism

By Jennifer Smyth

Holly and Nick art 3The 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 8th 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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Any Woman’s War

Any Woman’s War

By Sarah Konstantonis

Every Woman's War ArtNot much longer now, I thought while tucking my legs underneath me, perched on the edge of hospital bed.  Any moment and the doctor will come through the door and confirm our discharge, and I take a final moment to revisit the familiar decor, the blue painted walls and stick on cartoon characters surrounding me. I had remained at my infant daughters side for the past 48 hours, unable to hold her tiny body while she sunbathed under lights to decrease her billirubin levels, cruel looking patches protecting her delicate eyes. Now the jaundice has sufficiently decreased and I could bring Analise home where we will join my husband and small children and finally settle into being a family of six. Analise is ten days old and sleeping in the plastic bassinet next to the bed. I look down at her face, pale, smooth and slightly translucent, a roadmap of blue veins visible beneath. She has a mop of feathery auburn hair and I hope that her eyes fluttering beneath thin lids will stay blue, unlike her brothers and sister. I feel so blessed, two daughters and two sons, a loving husband, a life I had always wanted.

It’s early spring, and the dreary view outside the hospital window is of a grey sky with a watery sun over a rooftop parking lot. I was sorry to have only sandals on my feet to carry Analise out to the car, it looks so cold out there, and I shove my icy feet under the faded hospital blanket. Tired of the stack of magazines by the bed, of flipping through the channels on the miniscule pay-as-you-stay TV mounted in the corner, I let out a sigh. Let’s just get on with this, I thought, staring at the door, willing the doctor to our room. I want to go home.

Soon there was a knock and our doctor stepped in with a small smile. She was my age, mid thirties and dressed professionally, with long dark hair swept away from her face. We had met two days ago but already I felt very much at ease with her. I think that under different circumstances that we could have been friends.

“We’re all set.” I say after greeting her, eagerly putting on my shoes. I lift the baby to my chest, wearing her new pink sleeper with the puffy white lambs. After two sons her entire wardrobe was varying shades of pink, and I relished it. “I guess that we’ll see you tomorrow?” I ask, still sitting back on the bed.

The nurse had earlier explained that for the next few days we would have to return Analise to the hospital every morning until her billiruben levels were below an appropriate level. What a pain, I thought mildly. But, if it means that she remains healthy, it’s a small price to pay. We can get back to our schedules and rhythms, albeit with a newborn thrown in the mix. I wonder, absentmindedly, if I should pick up a pizza for dinner on the way to the house.

“Sarah,” the doctor begins softly, “there is something else that I want to talk to you about.” Something in her tone caused my heart to beat faster. She took several steps towards the partially open door leading to the nursing station and closed it. As I watched her it’s as if time slowed down while the air in the room billowed out just before it shut.

“Does Analise look like any of your other children?” she asked.

I found myself suddenly defenceless against something that I had pushed out of my mind over and over since her birth. Something that none of the nurses had noticed, that my midwives, family and neighbours hadn’t commented on. Something that I had almost convinced myself wasn’t actually there.

The truth was that Analise did not resemble any of us the instant she came into this world, three weeks early and within an hour. The midwife had laid her on my stomach while I caught my breath and she looked up at me, covered in blood and life sustaining matter.

Her eyes… I thought with sudden alarm, a sharp and unexpected strike into my heart. But it wasn’t because they were open so soon, or because they were so beautifully blue. It was because these eyes were so foreign and yet vaguely familiar to me. There was no instant joy with her arrival, only confusion and growing inner conflict. There were so many differences from the other babies; the small folded ears, the slope of her forehead. All around me people were welcoming and joyous. No one showing any signs of concern, my husbands’ face a mixture of happiness and pride. Surely what I saw would not raise any flags. This is my child, I thought, I love her.

“She looks like Mickey Rooney.” I whispered to my husband and midwife, and we all had giggled, an effect from the nervous and excited energy around us. I finally sighed with exhaustion and relief while Analise scored a perfect ten on her Apgar Test. We’re safe.

Now here in this room there was no escape back to that moment. I was being confronted with my suspicions and there was nowhere to hide, my worst fear right in front of me.

“It’s Down Syndrome, isn’t it?” I said in a throaty voice I hardly recognized.

The doctor gazed at my precious baby for a moment, sleeping soundly in my arms. I had been so eager to hold her, now that I had permission. My sweet baby girl to complete our family.

“That’s what I wanted to talk to you about.” She said quietly.

A blood test ensued and I numbly agreed to genetic testing. Our doctor also suspected a heart murmur and we immediately went for an echocardiogram which revealed three holes in her heart, one having a fifty percent chance of needing surgery in two years. I called my husband at work to tell him the doctor’s suspicions and results. He said all the right things, that Analise was here and that we will love her no matter what. That she is one of us. We’re a family.

Once the lab left our hospital room with my baby’s vials of blood, I clutched her to me, gazed out the window and let the waiting tears flow down my cheeks. I wept for all the things I dreamed for her, entering a world that until one hour ago I couldn’t wait to introduce her to and now fiercely wanted to shelter her from. A place with words like retard and disability. A world that presumes to know her value and dismisses her potential. I cried because I felt so helpless, so small and alone, unable to protect her, unwilling to accept an inescapable reality.

That night in my own bed I was looking at my daughter’s face. It was the same but entirely different now and I wondered how my body could have betrayed me? It had given me a near perfect pregnancy. I had declined the indicative test that had been offered. My last son’s numbers had shown a higher chance for having a child with Down Syndrome and I had spent the remainder of my nine months worrying. I wasn’t going to do that again, I had thought. I would trust my body that all would be well. But it was my body that allowed this baby’s cell division to fail, that couldn’t put the pieces of her heart together properly. If only I had been stronger.

I read about a study once that a new mother could be blindfolded and choose her baby when it was held close to her face. She could instinctively recognize her infant’s scent from hundreds of others. Before now this finding had comforted me. Reflecting on it briefly while nursing my other children, thinking to myself, I would know you anywhere, little one. And now this person in my arms felt like a stranger to me. Her disability, our connection, was behind the curtain and all I felt was anger and fear.

It was another cloudy afternoon when I sat with Analise asleep in her bucket infant seat, waiting again for the doctor to tell me the result of our genetic testing.

“So, as we thought, Analise does have Down Syndrome,” she said conclusively, leaning against a small desk in a simple room. I knew this was true but a hidden part of me thought that maybe we were wrong, maybe there was hope.  I tried to ask a question that was rolling through the trenches of my mind.

“Was it because I…or because we…”I began but was unable to finish. Thankfully the doctor quickly responded after watching the tears pool in my eyes. “Neither of you are a carrier of the gene.” I bit the inside of my cheek, unwilling to cry, unwilling to react, other than to nod my head. At least I was not a traitor.

“One in approximately seven hundred babies is born with this disorder.” Our doctor said reassuringly “This could have happened to anyone.”

But it didn’t, I thought as I drove home that day. It happened to me.

How would I raise a child with special needs? My other kids seemed, by comparison, half way to adulthood. They could read, write and were quickly grasping issues such as world languages and currency. Both of my school aged children’s teachers had commented on their advanced vocabulary and creativity. I was behind enemy lines, uncharted waters. The next eight weeks were met with waves of thoughts and emotions from despair to tearful joy. During it all I grew to realize that my greatest ally was going to be my child, in those intimate moments that cause my heart to soar. I had to grow to know her, just as I had for my other children. Everything else would fall into place. We were in this together, her and me.

As we embark on this journey every milestone, however minute, feels more like a victory. Her first smile, gurgle, coo and giggle seem indicative of the amazing girl and woman she will become. There are times when miserable thoughts invade my day, oppositional fears for her future, but I am becoming better at ignoring them.

Some nights I wake in a hot bed draped in sweaty sheets. I am disoriented, shaking off the remnants of a dream I had of a daughter that was supposed to be. Like a missing limb, I can still feel her, or rather the idea of her, and I have to remind myself that everything will be all right. I reach out in the dark to touch the bassinet by my bed and listen to the small shallow breaths coming from within. This is my baby. Someone I would die for.

I realized there is a choice I have to make every morning, the choice to surrender. I surrender to the love I have for my daughter.

In the end we are powerless against things such as society, biology or a diagnosis. In the end we raise the white flag and pray. We find peace in the virtue of motherhood, that unending love, the primal bond that unites us to our children despite and because of our flaws. We hold on to our babies and to our faith that with every battle, we will come out the other side together, sometimes bruised, but complete.

Sarah Konstantonis is a freelance writer who has worked as a social programs manager and counselor in British Columbia, Canada. She enjoys writing short stories and is completing her first middle-grade fiction for publication next year. She now lives in Brockville, Ontario with her family and can be reached at skonstantonis@gmail.com.

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The Inner Husband

The Inner Husband

By Patricia Stacey

Dollhouse in human handIn 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.

Little Man

Little Man

By Fran Dorf

Fran DorfOn October 22, 1990, I became the mother of two children. I will always be the mother of two children. Our daughter, Rachel, was already nine, but we’d been unable to conceive a second child after my husband’s shocking bout of cancer two years into our marriage, and so after several miscarriages and years on the artificial insemination rollercoaster, we’d arranged to adopt.  It was a boy. He was a month early.  We were thrilled.

Bob and I flew to the birth mother’s southern city, made our way to the hospital, and stood at the nursery window. The 4-pound incubated baby looked tiny, sickly.  He had an odd, bulging forehead and his skin was dusky and mottled.  I started to cry and Bob put his arm around me.

Later, we made awkward conversation with the birth mother in her hospital room.  She was a fortress of a woman, not fat but about six feet tall and solid, wearing a blue bathrobe, and reeking of cigarette smoke.  She’d mentioned some early pregnancy drinking in her first letter to us, calling it “partying.” My God, I thought, what were we getting ourselves into?

Bob and I spent the next few days in the hospital getting to know the baby, and nights in our hotel room making phone calls.  Our daughter’s pediatrician said the baby would probably be okay, given his normal head size. Bob’s parents said they’d support us, no matter what. My mother, who died only a few years later, said, “Why take on someone else’s problems, Fran?”

We couldn’t reject the baby because he looked sickly.  He was ours.   We’d become attached over months of letter-writing and occasional phone calls with the birth mother, and although I was all over the place in that hotel room, I knew I had to take him on when I had a dream of him, left all alone in a dark, empty nursery.

By preemie standards he wasn’t that small, but the doctors said he needed to stay. Bob flew home and brought Rachel back. Our daughter was overjoyed that she now had the sibling she’d longed for, and we gathered him in and declared him ours. We named him Michael Max, in the Jewish way, after Bob’s favorite grandfather, though most often we called him Mikey, Magoo, or Little Man.

A few days later Bob took Rachel home, and I was alone. Didn’t matter. I was falling in love.  Each morning a nurse took Michael Max out of his warmer and handed him over.  I’d sit in a rocking chair most of the day, watching all the other human dramas unfold in front of me like parchment scrolls, feeding Mikey through a sliver of a nasal tube, unselfconsciously crying and whispering to him: It’s okay, it’s okay. You just have to be the baby, and I’ll be the mommy.

I’m not sure when I took Michael completely into my being as my son. Was it the first time he cried and I rocked him until he settled?  When I changed his diaper and saw how undernourished he was, his skin hanging off his bones?  When I found myself singing to him, though my singing voice isn’t fit to be heard by man or beast? When he looked up at me with deep blue eyes, and we both seemed to know we were meant for each other?

In the evenings for the next three weeks at the hospital, I’d find a restaurant along the local strip, eat dinner alone, and then return to the hospital for a last visit. The chicken in the Greek place gave me food poisoning—nausea and stomach cramps so bad I considered checking into the hospital myself—but by dawn I was ready to resume my vigil. That morning, a young, redheaded teenager sat in the rocker next to me, awkwardly holding her newborn, weeping and wavering in her decision for adoption. I decided I was lucky that Michael’s birth mother was older, steadier. We had agreed to her terms: we would send letters and pictures once a year, one way, through the lawyer.  I was grateful it was only that. I could do that.


Michael became a beautiful child with blue, slightly crossed eyes, a pile of blond curls, and a solid build. Like many parents of children with neurological difficulties we became experts on issues we’d never even heard of before, like sensory integration, and Pervasive Developmental Disorder, Not Otherwise Specified.

Indeed, Mikey was often frustrated and refused to touch certain objects, but everything he would do, he did with uninhibited enthusiasm, especially when it involved water.  Bath time was always hilarious, though convincing him to get out of the tub not so much, and our little man just adored the pool.  We all had to be there to watch, too, including Cookie, our cocker spaniel, and Mikey’s favorite stuffed toy, a puffy bright pink and green turtle.  He’d stand at the pool’s edge, laughing, and jump into our arms, often before we could even get ready to catch him.  He’d put his arms around us, give us one of his squeezes, giggle more, and then scramble up the pool steps to do it again.  And again.  And again.

Perhaps we minimized our son’s problems in our letters to the birth mother, though we often felt overwhelmed by them. Mostly, we told her how much we loved him, how hard we were trying for him.  We described how he giggled and put his whole body and being into hugging us.  We told her that he loved Big Bird, buses, and balls. And we wrote about his sister, who had become very grown up, teaching him, hovering over him like a little mother.

In our third birthday letter, we told her that Michael had finally learned to point, had a vocabulary of about eight words, or maybe word-sounds, and one time shocked everyone by clearly putting together “peanut” and ” butter,” neither of which was one of his words.  We sent the gorgeous photograph Bob had taken that summer of Mikey and his sister in the pool. A photo we enlarged and hung in a frame on the living room wall.


And then came December 7, 1993, my personal Pearl Harbor Day. I put Mikey down for his nap and went to my office to work on a new novel to fulfill a two-book publishing contract. For reasons that remain mysterious and fascinating to me, I’d churned out over a hundred pages in the six weeks prior to that day, working faster than I ever had on a story about the kidnapping of a little boy named Elijah.  Oddly, I’d spent most of those pages not advancing a kidnapping plot but rather imagining his young parent’s grief and terror.  I still wonder if this was a kind of prescience, since I had no real idea at all what grief and terror for your child would be like.  It could also have been an expression of my fears for my troubled son.

Around 4:00 I went to check on Mikey and found him in the midst of a violent seizure. He wasn’t breathing.  My own screams told me that I had arrived in hell, and from that moment on it felt as if I were constantly screaming—screaming when we arrived at our local hospital, screaming when we got to the big medical center where they shipped him a few hours later, screaming at the next hospital, screaming at the next.  Even in my dreams I was screaming.

Michael’s end came on a particular date, of course, though it had already technically ended months before when we stood in front of a light box, looking at rows and rows of illuminated brain slices, after the last of so many MRIs I had lost count.  Each MRI was worse than the last, the blackness at the center of our son’s brain bigger.

The doctor gave us the news. “When tissue is damaged like this it shrinks and takes up less room, and fluid fills the void.  I’m very sorry, but there’s nothing there.  He will never get any better.” Sometimes I still can’t believe I’m a mother who survived hearing that.

After Michael died, I padlocked my office, retreated to the house, and declared I would never write another word.  Writing was what I had done before. This was after. My world sucked into itself like a black hole. I spent the next two years walking around wearing my bathrobe and my shroud of grief, crying or staring vacantly at the walls, only vaguely aware of my daughter and husband coming and going, floaters in my field of vision.

We had to send the birth mother one last, impossible letter, which I struggled and labored over for months.  We agreed to receive one letter from her. She thanked us graciously for the wonderful life we had given Michael, and said she was particularly sorry for our daughter, then thirteen.  She mentioned that she’d had another child.  She wanted to go to Michael’s grave. I was so fragile then, reeling in the early madness of grief; I veered from blaming her, to wishing she’d rescue me, to wanting to beg her forgiveness for failing him.  Yet that child, and his death, was ours, not hers, and we didn’t—couldn’t—allow her into our lives.  I do not have any of her letters now; sometime during those dark years I threw them away in a rage.


Our son would have turned twenty-three this October.  I’m still a writer, but I also work as a grief counselor now; it’s one of the ways I have found to move forward, writing is another.

I’m constantly amazed when I sit with bereaved parents that even though all grief journeys are unique, they’re also similar: the rage and often irrational guilt, the feeling of having slipped into another universe; the decision about whether to have (in our case adopt) another child; the struggle to figure out what to do with the child’s room, his things; the difficulty of dealing with people’s insensitive remarks.

My world is rich and full of laughter, humor, and wonder again.  Our beautiful, brilliant daughter is now thirty-two, a psychologist.  I’m a grandma. Our granddaughter is named after Michael.  We feel almost embarrassed at how much we adore that child.  She is three now, near our son’s last age, though I try not to think about that. A few weeks after giving birth, my daughter’s emotional generosity astounded me. “Now I understand, Mom,” she said. I wish you didn’t, my daughter.  As you raise your own child, I wish you didn’t know firsthand what could happen.

Yes, my life is sweet again, full of blessings. Still, I think I am like every bereaved parent.  No matter how long ago it happened, how compartmentalized the grief becomes, or how reinvested in life, this loss remains, forever imprinted on your soul. I can no sooner give up being Mikey’s mother than I can give up breathing, even though Mikey is no longer here.

Sometimes, even now, I have random after-the-fact realizations, for example, that some of the accouterments that accompanied the opening of my son’s life were replicated at the end: the long daily hospital visits, the vigil, the nasal-tube feeding.  And that all eight words Michael had mastered by the early summer of 1993 were gone by the time autumn came. And that in the large photograph in the pool that still hangs in the living room, our daughter is strangely bathed in sunlight and Michael is in shadow, as if doom were beginning to encroach.

Bob and I are growing old, but the boy who will always be our son has been frozen in time, in our memory and our home, forever a smiling, laughing toddler. We’ve moved several times since then, and we’ve always rehung our photos of him, and his red and blue finger painting that we’d framed like a work of art.  We always put his last pair of shoes in their proper place atop the bureau in our bedroom. Navy Stride Rite sneakers with green laces, well worn, with dirt-caked soles.

Fran Dorf is a psychotherapist and author of three novels, A Reasonable Madness (Birch Lane, 1990/Signet, 1992), Flight (Dutton, 1992/Signet, 1993), and Saving Elijah (Putnam, 2000).  Her writing has been published in anthologies, literary magazines, and online sites, such as McSweeney’s, Ars Medica, Forbes, Bottom Line, and Perigee. She’s currently working on a memoir, from which this essay is adapted. She writes an advice column and blogs as THE BRUISED MUSE at www.frandorf.com, on a variety of topics including psychology, writing, and bereavement, her therapeutic specialty.

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Water Bending

Water Bending

By Chris Fredrick

SU 13 Water Bending ArtAnna fully reclines in the bathtub. Her body and face glide below the surface and her dark tendrils of hair spread out, softly filling the space. She smiles up at me from underwater. “Did my hair do the sunflower?” she asks expectantly, her hair now a sleek stripe along her back. I laugh and nod as we settle in for our daily ritual. I wrap the towel around her preteen body and sit on the edge of the tub holding the Stonyfield Farm yogurt container. But first, I turn on the portable DVD player we’ve nicknamed Little Movie.

Today we are watching an episode from the Nickelodeon series “Avatar, The Last Airbender.” Again. We’ve watched the full series twice before, but Anna’s audience at 9 isn’t what it was at 7, or 5. And, we are both big fans of Katara, the show’s female lead. We learn in the first episode that water bending isn’t magic, it is “an ancient art unique to [their] culture,” and what it means is that Katara can move water without touching it.

When Anna was just two weeks old, she had a large pimple on her face. We were at my dad’s for brunch, and Grandma interrupted a conversation to yell across the room, “Chris! Why does Anna have that thing on her face?” I cringed. I was insulted, or maybe just embarrassed. Anna was my baby girl. She was gorgeous and perfect, and I didn’t want to acknowledge the interloper that I already sensed was ominous.

The following week, to my great relief, the doctor said it was just baby acne and that it “would clear up in a month or two.” It was no longer a single pimple; her face had changed rapidly and now pimples completely covered both cheeks, giving her face a pink, sandpapery texture with some patches elevated to a glossy sheen. I asked again at her two-month and four-month appointments. At the four-month visit, the doctor said, “Well, it doesn’t look like baby acne anymore, it’s probably just eczema.” Just eczema, I thought. Just—just—eczema. It sounded minor and common. It would go away.

I don’t wonder now why she cried so much and had such a hard time sleeping, but at the time I was looking for other reasons. This, after all, was just eczema. I am also embarrassed to say that I didn’t want to take pictures of her when her face was red and sore. It seemed to ebb and flow, so I would wait until her face was clear—and then snap a bunch of shots, changing her clothes and location so it seemed like the pictures were taken more naturally. “Bathe her frequently and apply cream,” I was vaguely directed.

Watching our Little Movie, we are both absorbed in the story. In this episode, both Katara and Avatar Aang learn from a water-bending master in Katara’s sister tribe. They need to be able to “bend water,” to use any avail- able water in stylized kung-fu fighting. The enemy is the Fire Nation—the people who can bend fire. I pour water over Anna while she watches, pausing the show while she submerges, and glancing occasionally at the stopwatch. Katara’s smooth motions direct the responding water and Anna imitates them, dancing her hands on the water’s surface.

By the time Anna was nine months old, I was religiously and doggedly bathing her. But that December 23rd, I noticed a ping-pong ball-sized lump on her collarbone. Panicking, I drove to Anna’s daycare to ask if anything may have happened. I recalled with a sting how she had cried out as I buckled her car seat. A slight fever—how many days had it been? One? Two? I had ignored it because that’s what happens with teething … right?

The next day she had an X-ray that confirmed no broken bones, but an MRI showed an abscess in her lymph node. She had surgery the following morning, her first Christmas, to drain the abscess. After being hospitalized for five days and on strong antibiotics, the skin on her face was once again as clear as it had been during her first two weeks of life. The consensus among the attending physicians was that she had likely scratched an open patch of eczema on the inside of her left elbow. A staph infection had then entered the bloodstream but had been trapped by the lymph node. She would be fine.

We maintained the bath routine we knew, and I tried to think of creative ways to keep her happy. The biggest logistical challenge was keeping her from streaking around the house when I was trying to get the cream on her squirmy little body. She would run away or cry if I restrained her. I was often on edge, and sometimes joined her in tears. “We are in this together,” I confided to her, my 18-month-old. “It is sad for me, too.” Certainly, any place outside our soaking rite, hitting was a strict “no-no.” But many nights, in the small, sweaty bathroom, I let her pound on my legs with her tiny fists while I restrained her and applied the globs. I don’t blame you, I thought. I would hit me, too. This is how the Little Movie was initiated into our club.

In addition to the water-bending tribes, there are other nations that have bending powers. The Air Nomads are air benders, of which Aang is the only survivor. The Earth Kingdom has many earth benders. Of all the elements, though, water is the only one with healing properties, and fire is the most dangerous and the hardest to control. Anna alternates between dunking her head and receiving my Big Gulp pours. She doesn’t flinch when I pour the water; she simply lifts her head to meet it. The water runs as a river, bending around the contours of her face. I watch her cheeks as I pour, and I can see the red drain away. I imagine the healing as the water cools the flames.

When Anna was two, she stopped sleeping through the night and would be up, sometimes for several hours, incessantly scratching. I rocked her, rubbing her arms or legs or back–wherever she was scratching. It was around this time she also starting having problems with her hands. They were so itchy that she would scrape them on furniture or carpeting, trying to get more leverage but tearing off sections of epidermis, revealing raw red patches and what looked like tiny white pearls.

Our allergist gave us new tricks. I was logging daily in a notebook— exactly what body parts (or parts of body parts) were flaring and how I was treating them—so I could perhaps look back and find patterns. The Notebook gave me very few answers, but it did help me identify some of Anna’s more elusive, though inconsistent, enemies. Some of the troublemakers seemed to include: the neighbor’s black lab, the month of April, and the wind.

When Anna turned three, she had worked her way through the allergist’s ideas and had even done a stint on anti-depressants to help us all sleep. She was then referred to the outpatient program at National Jewish Health in Denver, Colorado. During the week we were there, she received a more specific diagnosis: chronic atopic dermatitis. A symptom of this condition is that her skin does not have natural antibiotics, so if her skin is “open,” then it is open wide to infection. The “tapioca pudding” on her hands was diagnosed as dyshidrotic eczema, which was described as stubborn. Her atopic dermatitis, being chronic, was described as debilitating. These words made it into The Notebook in large print, boxed for emphasis.

While at National Jewish, I was trained by nurses as I bathed Anna. I was timed and critiqued. “You missed the top of the toes.” “You missed the eyelids.” “You need to apply that cream as if you were frosting a cake.” At the hospital, I felt relieved when I saw how much better Anna’s skin looked compared to other patients’, followed quickly by a hot flash of guilt. These babies, some seven, eight months old and some as old as Anna were all mummy-wrapped head to toe. Unrecognizable in their wet wraps, they wore bows of pink or blue on their heads. They were little cupcakes toddling through the hospital’s hallways.

Once she comes out of the chest-deep tub, I have three minutes to seal her skin in a combination of ointments and creams. Any reddish patches will get triamcinolone .025% cream, or .01% ointment depending on how stubborn the blotches have been. Her hands will get fluticasone, but only if she hasn’t had it more than three days in a row. These were the everyday sorts of applications, without the complications that would come with infections, scalp patches, molluscum, travelling, illness, stress, or head lice. The application is done as a patchwork quilt—the medicated ointments are not covered with non-medicated, but every centimeter must be covered, and all within three minutes.

By age four, Anna was a much happier child. Twice a day we soaked and sealed her skin as I had been trained. The full process takes over an hour from start to finish, so it took approximately 16 hours a week. The results were astounding, and it was then that our family came to know the real Anna. We had thought of her as high strung, hard to please, and crabby. But now, a new being emerged. She was compassionate, intelligent, and hilarious.

The stopwatch is crossing the 18-minute mark. I pause the Little Movie and move it to the counter while Anna shampoos her hair. Research shows the soak should be longer than 20—but shorter than 30—minutes. If we are outside that window, we aren’t helping and may make matters worse. When she gets out of the tub, her hair is wrapped up high off her face and ears so I can get the cream into every crevice.

Anna knows that she has sensitive skin. “Does anyone else have sensitive skin?” she asks.

“Lots of people have sensitive skin.” I am thinking now of the other cupcakes.

“Not as sensitive as mine. Mine is the sensitivest.” Anna has a large handful of cream that she is using to apply a base layer to her trunk—she has been finger painting “a rabbit holding a carrot” on her belly at this point in our routine. It started on Easter, over a year ago.

As I use the final Q-tip to check her ears, we are done—until tomorrow. And as long as we maintain our vigilance, we will keep the flares at bay. But the face of our enemy changes. I keep adding new hazards to The Notebook: swimming lessons, night- gowns, hand sanitizers, sweat. Now that she’s nine, I brace myself for what will be around the corner. She knows that when all the other girls are lined up for face paint, she needs to find something else, but how soon will she want to wear makeup? How soon before she is invited to a sleepover?

Tomorrow, as today, she will sit in water as deep as the tub allows. The towel will shroud her, and I will pour the water as she gently closes and then opens her eyes. I will bend the water as it flows over her forehead, over her cheeks, willing it to reach and heal every centimeter of skin, every part of her. We will both watch the next challenges that Katara will conquer, another courageous girl, another master of water.

Author’s Note: Tonight, Anna is filling her own bathtub for the first time. She is nearly self- sufficient with her routine. We still love The Last Airbender, but we’ve moved on to TV episodes of “Once Upon a Time” and “Burn Notice” and we’ve started playing Washcloth Basketball, where I shoot the washcloth to her over the shower curtain rod “rim.” And she still pauses to finger paint the rabbit on her belly.

Chris Fredrick spent 20 years writing technical documentation, marketing pieces, training, and (in darker moments) website code. An avid runner and mother of two, she initiated a creative writing sabbatical in the summer of 2012. Chris is currently working on a book chronicling her husband’s life–his childhood in Vietnam and his escape to the US after the fall of Saigon. Her work has appeared in Literary Mama. Read more of her work at: chrisfredrick.wordpress.com.

Illustration by Jane Heinrichs

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Flying with No Helicopter in Sight

Flying with No Helicopter in Sight

By Lucy Berrington

Web Only Helicopter ArtI know what the answers will likely be.  Still, I ask, “Would you let your 16-year-old fly thousands of miles alone, stay in hostels with strangers and pretty much do what he wants?”

Mostly, parents stare at me in disbelief.

And this is before I even mention (in case they didn’t know already) that the 16-year-old in question has Asperger’s syndrome). That’s when they glance at each other,  perhaps betraying an unspoken question, “Who’s calling social services, you or me?”

wouldn’t.”   They add quickly, “but that’s just me.”

No, I say, it really isn’t just you.

“Of course, it depends on the kid,” they say.

That’s true. It depends on the kid.

Still, almost none of the parents I know, it turns out, would allow their 16-year-old to do these things, regardless of the teen’s developmental or neurological status.

Even for me, the obvious response, when my elder son Hugh started asking to do this, was no. “Why exactly?” he wanted to know. Why exactly? Because you’re too young.  “Too young for what exactly?” What exactly? You’re not even old enough for a gap year. High has two more years of high school.

In a New York Times article about preparing any age child for school, Arthur Levine and Diane Dean, authors of Generation on a Tightrope: A Portrait of Today’s College Student, point out , “It’s never too early for parents to start being careful about not being too careful with their children.”

My own high school classics teacher told my class decades ago that she’d left her teen son alone in the middle of nowhere with just a map to find his way home.

I needed friends in the mold of my classics teacher.

I sought out an indomitable mother I knew whose son finagled European citizenship, moved to Amsterdam and got himself into university for zero tuition and zero risk of being busted for pot. “Look,” she told me, “A hundred and fifty years ago these boys would have been sent out west at fourteen with nothing but the expectation that they figure it out.”

Another friend had just dispatched her 17-year-old to Washington, D.C. for a six-week internship. He was staying in the home of some lawyer they’d found on Craigslist.

These were my people.

It must be evident that I am not a helicopter mom by temperament. Still, I felt like one in the early years. When your child has developmental differences, even play and basic tasks become scheduled:  social groups, occupational therapy, counseling.  It’s one appointment after another, enforced helicopter parenting even for moms and dads who never felt comfortable in the chopper. By the time Hugh outgrew his need for most of these appointments,  I was ready to dump the helicopter in some distant, humid jungle and let it rust.  These last few years, both Hugh and his younger brother have preferred that weekdays wind down around 3 p.m., soccer exempted. If I scheduled tennis and Russian and basket weaving I’d have to schedule a family breakdown too.

Like every person who has autism, Hugh is required to inhabit a world that wasn’t designed for him. Its proportions and expectations are all wrong. When his developmental differences became noticeable at two-and-a-half, I asked our early intervention consultant whether he’d ever be able to find his own way in the world. She didn’t know: “Ten years ago we weren’t picking up these things in preschoolers. There’s no precedent.”

With years of appointments and services, some smaller classes, and support maneuvering through the world, Hugh grew up even more supervised than most kids. Yet now, when he sets out for a trip from our home just outside Boston, he won’t accept rides even to the subway station, where he hops on the Green Line to the airport..

Hugh made his first solo trip last July to Washington DC.   “I’d never felt so free as the moment I stepped off the train,” Hugh reported from the hostel the first evening there. His second trip was to Edinburgh, with a layover in Dublin for the National Museum and two days with friends in England. His third, an unexpected gift from Dad, was to San Francisco. And in October he was lucky enough to swing a long weekend in Iceland — an earned reward from his indulgent father.

I haven’t parented other teens so can’t be sure of this, but it seems to me most have other stuff on their minds.  As a Brit, I’ve noticed that travel is intimidating to many Americans, expensive, and not widely perceived as a solo adult endeavor, never mind a teen sport. Europe, though an ideal learning arena for young travelers, with its intricate rail system, hostel network and feckless gap year tradition, is far away. Consequently, it doesn’t tend to pop up as an option. Most US parents aren’t faced with the decision about endorsing solo teen travel.  Instead they spend nearly every day and night with their kids until those kids go to college, and then the parents, bereft, freak out.

That might be how it goes with my 12-year-old, who has no interest in world exploration and regards family vacations as a heinous burden. The boys’ father and I moved to the US from the UK fifteen years ago, and later divorced, so they’re used to back-and-forth between two continents and two parental homes . Ours is in Massachusetts, Dad’s in Manhattan; and the boys tend to fly together as unaccompanied minors.  Because of this regime, our younger son is prematurely travel-weary, whereas Hugh’s expeditions have barely begun. (His plans extend to space, which makes my head explode.)

It isn’t easy, judging when to step out of his way, and how far. Our negotiations are at times anguished. Hugh’s persistence is a mighty force in the universe, or at least our universe — a priceless asset when he’s excited about math, a challenge when he’s into coffee and action at 2:00 a.m. His passion for travel is tricky, exciting, and admirable, and I’m grateful for it.  Many adults with varying forms of autism face colossal obstacles getting out into a world largely indifferent to their needs. Some spend decades in their parents’ basements.

Hugh reads travel guides and schedules, saves money, learns languages, studies how societies and cultures evolved: ancient migrations, genetic patterns, language families, the unexpected presence or absence of certain links. (Did you know English has more in common with the Sri Lankan language than with Hungarian? Or that the Basque people are genetically distinct, descended from Europe’s earliest inhabitants?)

His travel itineraries are filled with museums, galleries, national parks, noteworthy buildings, historical sites, restaurants offering abnormally large burritos. I can hardly complain that he’s not putting these travel opportunities to good use. To the cynics who suspect he’s sneaking into bars and brothels: I think not. Hugh sends photos and detailed reports, is faithful to the rules, and highly motivated not to screw up. Independence is earned, I remind him every time he acts immature. (Note to self: maybe stop doing that? No one can be mature all the time.)

I do think about safety, of course. Hugh is six feet tall, and broad; he doesn’t project vulnerability and is conscientious about minimizing risk. I worry most about unanticipated social situations, especially sharing a dorm with strangers, so this is what we’ve emphasized in the prep (“You’re discriminating against me because I have Asperger’s!”). He knows to be cautious in expressing his strong views on politics and religion, how to get through jetlagged nights without pacing the dorm, and his conversations with fellow travelers have mostly all been friendly. Hugh checks in several times a day via text, phone, Facetime and various social media, and hasn’t yet traveled anywhere we don’t have friends on call for emergencies, except for Iceland, where he joined a guided tour each day, so was fully supervised (the highlight of that trip was climbing the volcano that shut down international flights in 2010).  Right now I’m urgently cultivating email relationships with friends of friends in Slovakia and Poland. Our one problem so far is his teen debit card account, which has been so unreliable I end up wiring Panic Cash. I’m in the market for an alternative.

Although Hugh’s solo trips have so far been to English-speaking destinations, I don’t see that as essential. Where he’s an obvious visitor, Aspergerian differences can become just an indistinct piece of the foreignness. He’s navigated an alien culture his whole life: travelling is his escape from the everyday stress of trying to pass.  That’s why part of me is saying, “Go! Run!”

And while I’m cautious about attributing his characteristics to autism stereotypes, some classic Asperger’s strengths are much in evidence: his fascination with maps, his meticulous research and fidelity to planning, that all-consuming motivation and analysis, his independence, his unconventional vision. If my typically developing younger son ever changes his mind about travel I’ll face a different set of angsts (who are you going with? what exactly is the plan? you know I’ll have you shadowed?)

Flying back from San Francisco recently, Hugh started writing a travel guide: “According to St. Augustine, the world is a book and those who do not travel read only one page. I couldn’t agree more, but would go even further. I would say the world is a book and those who do not travel read only one page, but also cannot judge that page or critique it. … Travel helps us understand other cultures, which is an important thing, because without comparison to other cultures we cannot truly see our own.”

This time, I insisted on meeting him at the airport. (Please. It was midnight.) I waited in baggage claim, reading. Looking up, I took a moment to recognize the tall, smiling man striding towards me with the backpack, and the confidence that the world is after all, becoming his.

Related Link: In Defense of the Nap Year

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Mothering Through Two Brain Surgeries

Mothering Through Two Brain Surgeries

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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Two Hearts Beat as One

Two Hearts Beat as One

fall2009_newmanI am thinking soulfully of the U2 song, but what my kids are thinking of is poop. This is not atypical; poop is, in fact, the paradigm for much of their philosophical reflection. “Gosh, I don’t know,” Birdy is saying. “You’d have to sit and sit and wait and wait and just be so bored while the other person was pooping.” I picture us in the gas station bathroom just yesterday, me leaning against the wall of the stall, breathing through my mouth, eager to get back on the road, while Birdy grunted and groaned and wound toilet paper around and around her hand and hummed a little bit of “Rainbow Connection” and then exclaimed, laughing, “Gosh, I forgot for a second what I was even trying to do in here!”

“You’re right,” I say now. “I bet it can be pretty boring.”

“But you’d never be lonely,” Ben sighs—Ben, this tender-hearted ten-year-old who still bolts into our bedroom in the dead of night, driven by a loneliness that beats in his body like a second heart. “Though it could be kind of hard to learn to swim.”

My children are somewhat obsessed with conjoined twins, their awe and fascination marinated in the brine of a salty something that tastes a lot like existential angst. I get this, and not only because I, too—at their age and still—have felt the tug of curiosity in this exact direction, but also because conjoined twins offer a kind of de facto case study of personhood. Would you still be you if you were your own self in a shared body? Your independent will in a dependent package? As Patty Hensel, the mother of conjoined twins Abby and Brittany, puts it so beautifully, “They’re two girls wrapped in the same blanket.” This particular pair of sisters each has a head and a heart, but share their other limbs and organs: one liver, one uterus, two arms, two legs. Ask them if they have two heads and they roll their eyes, say, “No.” Because, duh, they each have one head.

And I know this because up late in a motel room, Michael and I watched the Discovery Channel special about them turning sixteen and learning to drive. These happy, fearless Minnesotan kids with their shiny ponytails and spunk, bickering over when to signal and turn. My God, can you imagine your kids sharing arms and legs? It’s hard enough for mine to share Laffy Taffy. You can’t help admiring the parents with their Midwestern absence of nonsense: These are kids with household chores and sturdy egos. You can’t help wishing for that kind of confidence and character for your own. In fact, we almost woke ours to watch with us—they would have loved these girls—but then we didn’t know how to feel. It was such a guilty pleasure, this sating of our own voyeuristic curiosity. There they are, so sassy, so teen-glossy, in their cute Aeropostale tank top; there they are, e-mailing their friends, doing each other’s hair, playing softball, stopping at school lockers to gossip and giggle. When Brittany says that they plan to be moms, but then snaps that when and who they date “is none of the world’s business,” you feel slapped, as if she knew that you were just then wondering about that very thing.

Which is how I always felt as a kid reading Very Special People: The Phenomenal Bestseller That Reveals the Real Lives of Human Oddities—Their Loves and Triumphs. This is a book that I rummaged from a bookshop bargain bin, and then spent countless summer afternoons poring over while all my little ten-year-old friends were braiding lanyard key chains and swimming in each other’s pools. Given my own personality, the attraction to human oddities was really no great mystery. But then here was a book that, like pornography, invited you to stare at the very things from which you knew you were supposed to look away: extra and missing limbs, beards on ladies, folks who were microscopically tiny or wildly humongous; The Mule-Faced Woman; The Dog-Faced Boy; The Elastic-Skin Man.

There were photographic plates of all of them, all uncomfortably riveting, but only the conjoined twins opened up a can of existential worms. You’d still be you with three legs or no legs, after all; you’d be you even if you were the limbless “Caterpillar Man,” rolling cigarettes with your lips, or if you were featured hirsutely in the chapter, “Hairy, Hairy People” (as I doubtless will be soon). But what if your body were not yours alone? What about the saxophone-playing Hilton sisters, joined at the spine? What about Radica and Doodica Orissa, connected at the chest? “When one took medicine, the other felt its effect” was a claim that struck—and stuck with—me. Even then it felt like a metaphor, though I wasn’t sure for what. Compassion, maybe? It was a sibling trait I sorely lacked. Somewhere deep down, I worried that my own brother could have lain writhing on the floor, and I would have hopped over him to yoink the last Fudgsicle from the freezer.

But, like that of my own kids now, my curiosity was often scatological in nature. The same way I wondered where Laura and Mary pooped when they were snowed in for shockingly cheerful months on end, I wondered about the Tocci brothers, who, the book pointed out, shared a rectum. (I can’t help picturing my kids in a whining argument about whose turn it is to wipe). Or Chang and Eng Bunker who, married to a pair of sisters, fathered twenty-one children between them. And there’s just no getting around the twenty-one certain instances of conjoined doing it required by that count of offspring. This latter is so preoccupying a subject that it actually seems to have generated a whole entire novel, Chang and Eng, by Darin Strauss. Oh, sure, it’s about other stuff, too: nineteenth-century Thailand and American slavery, for instance. But when you get to the procreation half of the book, you realize that the whole thing has been written in response to the question: How on earth did they have sex? Like the punch line to the joke about porcupines: very carefully. And the imaginary plot twist of one of the twins cheating with the other’s wife is almost too ecstatically strange to bear.

For my own kids, though, it’s not sex they’re curious about, not just yet. It’s the umbrella category privacy—someone else snatching a peek at your nethers, say—that gets them. “For me?” Birdy says suddenly over a plate of spaghetti. “The worst thing if you were a joined twin? You couldn’t get privacy to go to the bathroom.” Really? That’s the worst thing? I scroll through the six years of her life and wonder how many times out of a hundred she has yelled from the bathroom for company, wonder how many times out of a hundred I have actually finished my own wiping and flushed before she barged in.

“I know exactly what you mean,” Ben is saying now. “What if you pulled down your pants, and you were, like, Hey everyone, look at my penis! Then you’d be showing everyone your brother’s penis, too!” Ben thinks for a moment, absentmindedly drinking out of his sister’s water glass. “But I guess you wouldn’t really do that. You just couldn’t. Being a conjoined twin would be good that way—I mean, it would make you a better person, a kinder person. You wouldn’t always get what you wanted.” Another moment of quiet drinking follows. “Not that you do anyways,” he adds, which seems somehow to be the point exactly.

Maybe Ben is wrestling with a fantasy of unfettered independence—a fantasy that keeps getting disrupted by his identification with conjoined twins; he keeps realizing that his own independence is, in fact, fettered. He is not, after all, like my free-bird ex-boyfriend, tripping off to Santa Fe to play ultimate Frisbee and drop acid every other day without a shred of concern for anybody else’s pesky feelings, not that I remember or care. For better or worse, Ben’s life is conjoined with ours. “Or what if you’re on a road trip,” he’s saying now, “and one of you has to use the bathroom, but it’s not actually the best time to stop and find a bathroom?”

“Um, honey?” I say, picturing our various national tours of fast-food restaurant toilets. “That’s basically every road trip our family has ever taken.”

He laughs but can’t stop with his conjoined case studies. “Or, like, at fairs, if one person wanted to go on the roller coaster and the other didn’t? That would be kind of hard.” Yes, that would be kind of hard: I know this, given that my kids insist on each other’s company on the merry-go-round or Tilt-A-Whirl, but rarely agree on which rides to try. “Or on a trip? If one person wanted to go to a clam shack but the other wanted, like, barbecue?”

“Isn’t that kind of what it’s like anyways?” I ask gently, and Ben laughs again.

“Oh yeah, right! It’s not like I’m just eating alone in a clam shack because that’s what I wanted!” I think about the Hensel twins saying, so beautifully simply, “We take turns a lot.” Exactly.

Birdy can’t help taking her visions of conjoinedness to accidentally absurd endpoints. “What if you just had one brain and one face and one body?” Her eyes are wide with the shock of imagination.

“Um, Birdy?” Ben says. “Then you’d just be a regular single person.”

“Oh, right!” Birdy laughs, while Michael whispers to me, “A regular single schizophrenic person.”

But I understand. She’s testing out her difference from us: After years of behaving transparently, kids learn at a certain point that the movie screens of their minds play for them and them alone. Privacy and independence come on suddenly, like a sleeper wave of separation, and children experience this with simultaneous relief and dread. Birdy is different from us—connected, but apart—and after an umbilical fetus-hood and a nursling babyhood, this seems to be hard to grasp. I explain to her about the way Chang and Eng mixed first-person singular and plural in utterances like, “We am Chang-Eng.” It actually reminds me of Birdy herself as a comically pronoun-challenged toddler, never knowing if, as a speaker, she was “I” or “you.” “Are you hungry?” you’d ask her, and she’d reply, heartbreakingly, “You am.”

Thinking about conjoined twins is somehow making concrete for us the family condition of connection and compromise, the childhood condition of separation and dependence, the parental condition of empathy and encumberedness. And it’s not that conjoined twins exist as a metaphor, of course; they’re not here for us; they’re not simply a screen onto which we get to project our curiosity and philosophical questions. One egg split into two consciousnesses, that’s why they’re here, and you only have to watch Abby and Brittany for one minute to grasp their fundamentally unabstract humanness. In fact, I’m thinking now of this one still photo of them as little girls—a black and white picture of them in a swimsuit by the pool, with their frightened faces, their arms wrapped protectively around each other while a little boy gapes at them from the water. And what I feel, looking at that photo, is what it’s like to be their parents. To be any parent. The way you ache when they ache, the way you experience their stomachaches or heartaches or fear in your very self. It’s as if, having once been placentally connected to your beating heart, having once inhabited your actual body, your children continue to live there with you. For better and worse, you are never alone again. Sex might test your apartness from another person, but parental love defies it utterly. With a pair of small, beloved feet pressed hot against my belly, I have burned with a fever not my own; and as Tylenol cooled that body, I have known relief. When one took medicine, the other felt its effect. This love is an affliction, a true human oddity. I have never been so conjoined in all my life.

“We am Birdy-Mama,” my daughter teases from my lap.

But then Ben is saying suddenly, “Oh gosh. Another thing? If one of them dies?” Then the other will die, too. I hear it before he even says it—think of Chang’s dying hours after he felt Eng’s fatal coldness, his heart broken literally and figuratively by the broken heart of his brother. He refused to be separated, even then, even if it meant saving his own life. I think of parents everywhere—the feeling you have that you’d die if your child died, though you wouldn’t. You’d grieve and live and perhaps even thrive in your truncated self, though the ache of the missing part would never leave you. This is an individual feeling, yes, but one that exceeds the beating of a single heart. My eyes fill with tears. Only then what Ben actually says is, “I mean, you’d have to, like, drag around a—yuck—dead body everywhere you went.” He shudders, adds, “Gross,” and I am reminded for the umpteenth time that we have shared a body, this child and I, I have imagined him almost as a second self, but then, like Chang and Eng, like Abby and Brittany, we are two different people after all.

Author’s Note: I’m worried that it sounds here like all we do as a family is sit around chatting merrily about other people’s physical challenges—Wow, if you were blind, you’d sure trip over everything!—especially given the ugly, terrorizing history of the “normal,” which has always felt fully entitled, it seems, to marshal gigantic armies of alleged oddity to define itself against. Which is what I want my children to grasp: that every time you point to another person and think, “That,” you might imagine a filament casting off the rod of your finger to catch that person and reel them in close; you might consider pointing back at yourself, and thinking, “Me, too.”

Brain, Child (Fall 2009)

Catherine Newman is the author of the award-winning memoir Waiting for Birdy, and writes regularly for many different magazines, including FamilyFun, where she is a contributing editor, Real Simple, and the nonprofit kids’ cooking magazine, ChopChop. She writes about cooking and parenting on her blog at benandbirdy.blogspot.com.

Want to read more thought-provoking essays? Subscribe to Brain, Child: The Magazine for Thinking Mothers and see why we’ve been receiving awards for literary excellence since 2000.

Special Needs Children in Italian Schools

Special Needs Children in Italian Schools

By Michelle Pina Damiani

0-2A 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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Hearing Langston’s Smile

Hearing Langston’s Smile

By Kristen Witucki

Langston ArtI stood in front of the changing table wearing just my underpants and nursing bra. My husband James stood next to me so that he could learn how to change Langston’s diapers by touch. James was fully clothed in corduroy pants, a polo shirt, and a fleece pullover. Despite my lack of clothing, I was sweating in our overheated apartment — just knowing what James wore made me sweat even more. My stomach felt like a leaky balloon that wouldn’t fully deflate, my groin was still caked with blood from the recent birth, and my swollen feet felt like they couldn’t hold my weight another second. My fingers smelled, not unpleasantly, of the diaper rash ointment I applied religiously to Langston’s perfectly smooth bottom. His newness and fragility still made me tremble.

“When you put the diaper on,” I was explaining to James, “the two pieces of tape always need to be under the baby so that you can close the diaper from the back.”

Mom, who was watching in the doorway, said, “I have to take a picture of this demo, but don’t worry, I won’t post it on Facebook. I’m going to head home now. You two seem like you’ll be okay on your own.” I wanted to argue, to beg her to stay through the weekend, at least, but I didn’t. After all, I was supposed to be the mother now.

Because we are both blind, most of the doctors and nurses James and I encountered when Langston was born were skeptical of our parenting ability. Too tired to advocate, we kept ourselves surrounded by a pod of rotating friends and family members, until we convinced the medical personnel that a protective membrane always encompassed our family’s nucleus. They cleared us to go home on the Monday after Langston’s birth. Mom stayed with us for four more days. She woke up with me around the clock and helped Langston keep his hands away from my nipples so I could feed him. She changed some of his diapers and cooked simple meals from my childhood: grilled cheese and canned tomato soup, homemade meat loaf and baked potatoes. When mom came, towers of still unopened baby gifts filled the apartment, which, combined with her mothering presence, temporarily added to the chaos. Her laptop and work things took up part of the kitchen table, and an air mattress engulfed most of the living room floor at night. When she left, the homey clutter was gone. The gifts were organized, the air mattress was put away, her work things were in the car, and we were alone with Langston.

I didn’t realize that my mother’s baptismal gift of privacy was the beginning of the reverberating isolation of early motherhood, the kind when shouting into the cave only intensifies your own echo, and your only hope of escape is the bond you forge with your child. Surprisingly few people interrupted our privacy, given the number of visits friends and coworkers promised before Langston’s birth. Later people blamed their distance on the holiday rush and then on winter — Langston was born on the last day of November. And by springtime, he wasn’t new anymore. But I sometimes wondered whether the advent of social media made many of my sighted acquaintances feel as though they had experienced this new person in all his glory right from the convenience of their own screens. From the moment he was born, my relatives and the friends who visited took photos of Langston for me to post on my Facebook profile. I welcomed the pictures, because Langston, as a sighted child, might someday appreciate those glimpses into his early life. But displaying those for all of my friends, may have accentuated my loneliness during early motherhood.

I inwardly panicked on the day James returned to work when Langston was seven weeks old. It wasn’t just, “Who will change diapers and get the baby to sleep so I can have a break between feedings?” In a few short weeks, I had seesawed from longing for privacy to longing for adult conversation — any conversation beyond soothing a baby’s cries.

My days were all nursing and diaper changes, but during the snatches of time when Langston catnapped, I turned to the internet for companionship and support. To make room for baby things in the apartment, I had sold my desk, and now, after Langston was born, I sat cross-legged on my bed, the laptop propped on my knees. The bed was a cozy nook around which my activities could center. I could let Langston sleep next to me while I typed, or I could set up his activity mat beside me so he could stare at toys and kick his feet. I sometimes nursed him on the bed, too, propped up against pillows and the sometimes creaky headboard. But since James had gone to work, the bed was unmade most of the time, and the old quilt, comfortable but flattened by use, was crumpled back, exposing sheets that had enough holes in them to feel unattractive but not enough holes in them to throw them away. I was never interested in making the bed, but when James failed to get around to it, it reminded me of our newly disheveled routine.

One such day on the unmade bed, I received one of my perky weekly emails from BabyCenter, supposedly tracking my baby’s progress. This email cheerfully told me that my first reward for all the sleep deprivation was coming soon in the form of my baby’s first smiles.

Just then, Langston wailed again, even though he had barely slept for twenty minutes. I picked him up and wanted to cry along with him. Suddenly my longing for adult conversation and my pride in having learned to care for my son were eclipsed by my having missed something so small but apparently so monumental. I began to obsess over all of the things I couldn’t do. I couldn’t see which toys he preferred as he stared at the silken bars over him on the activity gym. I couldn’t follow his photographed progress on Facebook. And worst of all, without being able to see and respond to those smiles, I was not a real mother. I was just a milk dispenser and diaper changer. I would meet needs, thereby satisfying the skeptical medical personnel, but I would not be able to create a foundation for love. I imagined all those other mothers, smiling back and forth conversationally with their babies while my mouth felt cracked with the tension I felt inside. Not only was I not connecting to the outside world except through a computer, I was not connecting to the inside world of Langston’s life as a developing sighted baby.

On Valentine’s Day, another work day for James, neither of us bothered to give each other valentines. I wanted to ignore the holiday in support of those it left out. However, I was feeling left out myself, wishing James had chosen to stay home with me, choosing love over work, even though his work directly enabled our love for our new baby. Langston and I were on the unmade bed again. I had already nursed him three or four times that day, had changed countless diapers, and gulped down food and water during his brief naps.

I was bored with the repetitive music of the activity gym, one of the few electronic toys I allowed Langston. Even though he was still so little, I could feel my boredom seeping into him, making him fretful. So I picked up my Victor Reader Stream, an accessible digital audio player and recorder, and pressed the record button. I could feel the baby watching me.

“Daisy, daisy,” I sang, “give me your answer. Do.” The song was one my mom had taught us when we were little. Suddenly, Langston sang an encouraging note. It was little more than “aaaaa,” but I knew he was listening.

“I’m half-crazy,” I continued, my voice wobbling off key as I suppressed my emotion beneath the song, “all for the love of you.”

Again Langston sang, “ooooo, aaaaa.” As I finished the song, he responded to each line, and for the first time, I experienced the validation of call-and-response through the sounds of my son. “Are you singing?” I asked him. “You can sing it. That’s some good singing.” He answered each sentence with a musical variation on “aaa,” not imitating my music so much as he was imitating the act of singing, maybe inventing his own song. It wasn’t the first time I had sung to Langston, but suddenly we were conversing. I knew I was smiling at him and that he was smiling back.

After James returned from work and took Langston to give me a break, I uploaded the recording and posted the link to Facebook. I was overwhelmed by people’s responses, because unlike the photos in which I was a mere bystander, I had nurtured forth those early syllables. I was behind the camera. I was a mother.

The recording did not shatter our solitude. After all, people could now hear as well as see the baby right from the convenience of their own screens, and although it may take a village to raise a child, I’ve accepted that motherhood is, for better or worse, about the mother and the child, as it should be. But that recording was Langston’s first smile, and my first social and emotional connection with him.

Author’s Note: Two years have passed since Langston’s first smile. I showed him the recording of himself approximating song notes as a baby, but he’s more interested in hearing the more recent recording of himself saying “Hi.” Someday, though, Langston might ask about his infant self, and I’ll be able to give him a layered account of the experience. Langston knew I was blind from his earliest days, even though he couldn’t articulate it — just as I learned to mother him, he learned how to thrive as my baby, and I’m profoundly grateful.

Kristen Witucki earned her MFA in creative writing from Sarah Lawrence College. Her first book, The Transcriber, became part of Gemmamedia’s Open Door series. Her non-fiction has appeared in Huffington Post, Literary Mama and the Momoir Project. She teaches English, creative writing, and Braille. She lives in West Virginia with her husband, her son, and her Seeing Eye dog. Visit her at www.kristenwitucki.com.



By Keaghan Turner, Ph.D.

Waiting ArtMaybe because I’m teaching a women’s studies course this semester and everything “personal [seems] political”; maybe because of the most recent recrudescence of the Mother v. feminist debate surrounding last spring’s publication of Elisabeth Badinter’s The Conflict: How Modern Motherhood Undermines the Status of Women (passages from which I will assign to my students), I’ve been thinking about waiting rooms as empowering female spaces lately. Then again, maybe it’s just because I spend time every week as a mother in a waiting room, waiting.

I think this is a safe generalization: When you have a kid with a special need, you spend a good amount of time in waiting rooms.

These waiting rooms are different from the typical pediatrician’s or dentist’s. The waiting rooms I’ve frequented over the past few years are the waiting rooms of specialists—play therapists, occupational therapists, pediatric psychiatrists. When we wait for the pediatrician or the dentist, the only sound—besides maybe some coughing, sneezing, and whining—might be mothers softly reading picture books aloud or kids playing on DSis. These are communal public spaces—we are all sitting there together—but we remain isolated, anonymous, private. As parents, we are not there to make friends or to socialize or to chitchat. We are there, waiting for our child’s name to be called. We are there to see the doctor or dentist. We are there to get results. We are there to have a professional make things better.

In the waiting room of my son’s occupational therapist, the waiting room where I spend the most time on a weekly basis, this is not the case. Here, the same group of mothers whose children have the same Wednesday morning appointment slot wait together. These women talk. A lot. To each other. About everything. What’s more, in this waiting room, none of us expects to get results any time soon and there’s no guarantee the professionals can make things better.

The diagnoses of their children vary; the struggles of their families vary. But two things do not vary in the OT waiting room: it is full of women and the children are all boys.

One of these facts should not be totally surprising if we keep in mind that the Centers for Disease Control report that ADHD alone, the most frequently diagnosed (and controversial) pediatric “invisible disability,” is diagnosed approximately three times as much in boys as in girls in our country. As of a 2011 National Health Interview Survey, 5.2 million American children ages 3-17 have been diagnosed with ADHD; that’s 8.2% of that population. Given the pervasiveness—some would say epidemic—of “invisible disabilities” (which is a catch-all for anything on the Autism spectrum, anything neurologically atypical, anything neurobehavioral, anything to do with mental health), it’s no wonder our behaviorist, when delivering our three-year-old son’s diagnosis (after his first couple years of successfully and dangerously baffling all attempts at discipline and smashing a couple flat-screen TVs), said it’s “only ADHD” with a comforting smile and a relieved shrug while we blinked at her, thunderstruck. (After a couple more years in several different waiting rooms, I get the “only” now).

I have attempted to bring reading and to prep for my women’s studies class in the OT waiting room, but it’s impossible to concentrate amid the lively discussions that inevitably ensue—about the desirability or otherwise of covering forehead lines with bangs, about relieving neck tension by sleeping one night on a hard floor, about the latest developments in an ongoing battle with school administrators over an IEP, about the appropriate time to become a mama grizzly. I mostly just smile and nod, but still I know an awful lot of very personal information about a small group of women whose names I’m not even sure of. I know about their family history with panic attacks, their oversized male first-grader’s problems with a petite girl bully last year, how sorry their sister with three kids is that they could only have one. Eventually, it hit me that while I was staring at the same sentence in my women’s studies anthology, I was failing to appreciate the genuinely feminist, personally political experience happening around me on Wednesday mornings.

The atmosphere in the OT waiting room, despite the circumstances—which are sometimes heartbreaking in the form of preschoolers with feeding tubes and second-graders who will never walk or talk no matter how many waiting rooms their mothers wait in—is surprisingly cheerful. In the face of what most of us would consider tragedy (even those of us whose sons “only” have mainstream neurobehavioral disorders), these mothers manage to smile, laugh, and remark on the progress they observe in each other’s sons, even if the progress is as slight as the straightening of an arm. Being in that waiting room is like being inside of a real-live blog—or an old-school support group. Here is a handful of strangers (essentially) brought together by some degree of common experience, sharing their ideas, telling their stories—talking frustrations, failures, strategies, triumphs—and receiving feedback, edification, suggestions, encouragement, sympathy. The communal waiting room remains somewhat anonymous and so is, like a blog, altogether publicly intimate. All of us in the room together are insiders, and there is palpable relief in not having to explain, justify, or define. There is relief in not being judged and in being simply, immediately understood. Because of this insider-ness, there is a level of honesty, candor, and trust in that waiting room that I have never witnessed in a group of female (or male) acquaintances before. The neighborhood you live in, what your husband does for a living, the car you drive, where your degree is from (or if you have one at all)—none of it matters like it might at the pool, at work, or on Facebook. Our larger cause is common enough among us to affect the dissolution of boundaries (socioeconomic, racial, generational) that usually divide us into a true community motivated by a sense of the common good.

Maybe we should announce our affiliation with our own magnetic car ribbons: OT Waiting Room Mothers Anonymous. Neuroatypical Boy-Moms Anonymous.

Sure, there’s a therapeutic element to these sessions in the waiting room that is valuable in itself, but in trading stories and tips from personal experience, I’ve come to recognize that this group—whether they know it or not—exercises a form of consciousness-raising and call to action that goes beyond traditional notions of therapy or support groups. This community of mothers translates their personal discussions into action that often becomes, at least locally, political as they advocate—tirelessly and perennially—for their underserved and/or vulnerable sons: to teachers, school administrators, school boards, lawyers, insurance companies, health care professionals, society at large. This advocacy on behalf of our special needs children, empowered by a community of women, including not only other mothers but also the doctors, teachers, and therapists we collaborate with, must certainly qualify as some of the most important and practical activism some of us will ever perform as women and in solidarity with other women.

My Wednesday mornings in the waiting room have done more than all of my academic reading and training to prove to me the link rather than the conflict between identifying as a mother and identifying as a feminist. Every week I see that being a feminist mother exists not only in teaching our daughters to reject hollow beauty standards but also in banding together to persevere—personally and politically—in raising typically atypical boys.

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“Special” Sucks

“Special” Sucks

By Jennifer Curran

I lean forward, straining against my seatbelt to catch a glimpse of my little boy’s face in the back of the school bus. His thick lashes rim his wide brown eyes, his mouth is set in a straight line. As the bus rambles along in front of my mud-streaked station wagon, my Mother Vision sees through the rows of bus seats, through the backpacks and bodies of the bustling children, to his uncertainty. I can’t help but be scared for him. I imagine sprinting heroically out of my car and slamming through the bus’s folding doors like a modern day Calamity Jane.

I shake off my protective instincts. Somewhere in the way back of my mind I can’t help but wonder if my child will ever be just a regular little boy whose toughest day includes homework left undone, or choking back green beans to get to the pudding. Some days I would be very happy with average.

Tailing the school bus, I can almost see the noise reverberating off the windows, the hollers and screeches of the other children readying for their first days of first and second grade. They do not make my boy smile. Today, he doesn’t want to smile, play, share, or jump. Not today, maybe tomorrow — maybe not. My boy wants his space, his peace, his toys. He wants his red race car with the yellow flames down the side. It must have “Hot Wheels” engraved in its silver underside because “Matchbox” isn’t his favorite. He can’t read these words, but he knows them by sight. He wants to zoom his cars along the old gold shag carpet of our humble living room with his tinier than average fingers gently resting on their roofs; just him and his metal best friends in his raceway-world.

My boy sits far away from the other kids on the bus, his perfectly shaped nose pressing against the glass as he peers out at the farms rolling by. I wonder if he is looking for the magnificent white horses in the falling-down brown barn we like to wave to, or listening for the dulcet sound of the hoof beats we both cherish. Does he love them only because I do? Does he long to sit on the back of the black-spotted horse with the grey tail and run as fast as the animal pleases, as he leans forward into the wind and observes the world framed by triangle ears?

As I drive behind the bus, I remind myself to call the place — the organization — the non-profit — the one that has riding lessons for boys like him. Special boys.

If the word special doesn’t help on the school bus, it feels irrelevant in the grocery store when I’m carrying my screaming five-year-old over a shoulder out the sliding doors, abandoning our shopping cart that’s almost full with coloring-free, gluten- free, casein- free food — the foods it took me months to discover, whose labels I’ve read, studied, and memorized.

Special is hard. Special gets me scorns and head shakes, and worst of all, patronizing smiles from strangers who should know better. Educated strangers who drop their loose change into the Awareness Canisters and then seem the quickest to judge and remind themselves that they would handle things differently. The enlightened elitists who carry their reusable bags under their arms and are brought to tears when hearing about the autism epidemic on NPR, but can’t bare to acknowledge its truth when it is screaming down the aisles in Target.

I put my pretend blindfold in place so I no longer see the disapproval surrounding us. I crouch down in front of my son and focus my attention on the miniscule chance that he will be able to transition through the suddenness of this change in routine. Fridays are not for shopping. Fridays are for resting and playing. He shields his eyes from the fluorescent glare bouncing back at him from the hard tile of the white floor and the sheen of primary colored plastic wrappings. He focuses on nothing, his eyes wandering the store aisles filled with things he cannot have and all the toys I wish he knew how to use.

Special means appointments, prescriptions that don’t work, wait lists, and therapists. Diets that cost more than rent. Charts, scale ratings, questionnaires, graphs, and independent educational plans. It means late nights scouring the internet for answers and weighing the risks and challenging the chances.

Sometimes I have to put it all aside. Sometimes special boys just need to be boys who revel in a blanket-reinforced fort, boys who dig roads in dirt, and rub their spaghetti sauce-covered hands down their shirts while their mothers feign annoyance.

The bus makes a right turn to my station wagon’s left, leaving me behind a spotlessly clean silver Volvo with the small puzzle piece logo on its sunlit bumper. I stare at it and wonder if the driver has a special boy too. Or if she snatched up the sticker from a convenience store counter because it was free and makes her look compassionate without any actual effort involved.

I approach a stop sign behind the Volvo. I close my eyes and breathe through the urge to slam down onto the gas pedal and smash into the sticker on that bumper. I want to make sure the driver knows my boy is more than a logo, more than a fad or a cause. As I make my solo right turn toward my waiting desk and tiny office, I peer into the rear view mirror and secretly hate the Volvo and its perfectly coiffed driver, a temporary target for my aimless anger. I try to push away my politically incorrect, completely unheroic, fleeting but inescapable, belief: Sometimes, special sucks.

Author’s Note: I wrote “Special Sucks” during a particularly difficult period of time when my son JP was only five years old. I had been on the receiving end of many well-intentioned pats on the head that week and I was aching for some honesty. There are precious few articles or essays that validate the very expected and natural feeling that sometimes, special really does suck. There are days that seem endlessly hopeless, filled with outbursts and meltdowns and exhaustive trips to therapists and grocery stores. Thankfully, there are days of unparalleled joy and hope and progress. Special Sucks was my way of admitting that it’s okay to embrace the bad along with the good, that it’s okay to grieve for “normal” and want to perhaps ram your car into a certain logo or two.

About the Author: Jennifer Curran writes, mothers, works, knits and avoids house cleaning from her little home in Granby, MA.


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