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.




Sister Act

Sister Act

Back view of two little girls on caribbean vacation

By Maryanne Curran

The hostess seats the two of us at a booth. The restaurant is fairly quiet – just a handful of other diners are there.   We are late for lunch, but early for dinner. I’m not sure what to call a meal at this time of day.

My dining partner is Gail, my sister and best friend. We are not Foodies. Our tastes run to simple fare like the type of meals you can find at chain restaurants. I suppose that makes us Chainies. Give us a good burger, chicken teriyaki, or the like, and we’re happy.

As soon as I tell Gail that we are going out to eat, she starts smiling.   She loves going out to eat.

Strangers often mistake us for mother and daughter. Although, there is only an eight-year difference in our ages, Gail looks considerably younger. Gail is developmentally disabled and functions at about the level of a six-year-old. She has a sweetness and simplicity to her face that makes her look far younger than she is. That coupled with the fact that I speak for Gail and order her meal along with mine, would make any new acquaintances assume this is a maternal relationship, and not a sisterly one.

Eating out with Gail is a fun activity for both of us. But it does require me to serve up an extra helping of patience, because Gail uses the time to pose an endless litany of questions and comments before, during, and after our meal.

Sometimes, it feels like Gail is Perry Mason cross-examining me on the witness stand asking me one question after another.

I answer her questions as best I can. Sometimes my answers are not completely truthful – but I have to phrase my responses in ways that Gail can easily comprehend. Because of our relationship, Gail trusts me and what I say to her. To Gail, I am a fountain of all knowledge, and I do my best to provide the information.

Once we have placed our order is when the questions begin. “What’s her name?” asks Gail about our server.

I can’t remember what the server said. “I’ll find out when she comes back,” is my response.

When our server returns in a few minutes, I check her badge. After she leaves, I say, “Her name is Diane.”

“That’s a good name,” says Gail. “Where does she live?”

I’ve just met this woman. I’m not going to ask her where she lives like some kind of creepy stalker. I always tell Gail that the server lives in the same town as the restaurant is. It’s a guess. But it’s probably a good one.

“How old is she?” asks Gail. That question is a little easier.

“Thirty-four,” I guess.

I could say that our server was 16 or 66. The actual number is unimportant, as Gail doesn’t have a clear understanding of what various numbers mean. When asked how old she is, Gail often says the wrong number.

For the most part, Gail’s questions are simple ones. Occasionally, she poses a question that is not so black-and-white. It’s the gray questions that stretch my sisterly caregiving skills thin.

In particular, Gail’s questions about the whereabouts of our parents are an going exercise in patience for me. Our mother passed away in 2008; dad followed a few years. Gail knows that our parents are gone and now reside in a place called heaven.

Gail thinks heaven is like the mall and wonders why her mom and dad can’t drive back to see her. I try to provide consistency when answering these particular questions and choose words that are easy for her to understand. But it can be difficult to explain a spiritual concept to someone who sees things as simply as Gail does.

Thankfully, today’s questions are her standard ones and easy enough to answer to satisfy Gail. When our meals arrive, Gail starts eating and enjoying her meal. As I watch her, I’m struck by how lucky I am to have Gail in my life.

Lucky? You? (I can almost hear the disbelief as you read these words.) Yes, I’m lucky to have Gail in my life.

I’m not pretending that there aren’t challenges to caring for an adult with special needs. Every day, there are issues that cause me concern. I worry about her safety. I worry that she is healthy. I worry that others will be kind to her. Most of all, I worry that she is happy. I try to make sure she has a good life.

My friends sometimes wonder about how I handle caring for Gail, 24/7. It’s easy. When you love someone as much as I love my sister Gail. The joyous moments that we share together outweigh any challenges that we may face.

Occasionally, I wonder what my life may have been like if Gail was not in it. I would have been a very different person, most certainly. Because of our relationship, the positive attributes that make up my character make me a better person.

Because of Gail, Santa Claus lives, rainbows make me smile, and I know what unconditional love is.

Maryanne Curran is a freelance writer from Lexington, Mass.  When not exploring new places to walk with her sister, Maryanne enjoys reading, traveling, and spending time with family and friends.

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

The Surgeon’s Words Haunt Me

The Surgeon’s Words Haunt Me

By Joanne De Simone

feeding tube

My husband and I sat in the orthopedic surgeon’s office debating my fifteen-year-old son’s need for hip surgery, and foot surgery, plus a procedure to remove unnecessary screws from a previous scoliosis surgery. I could manage all of that, but when the doctor suggested we first have a feeding tube placed, I lost it.

When Benjamin was just eighteen months old, a geneticist told us, “Your son has a fifty percent chance of living to the age of ten.” Benjamin would need a feeding tube in the near future and, in his experience, fifty percent of children with feeding tubes died within a ten year time period. John and I immediately decided we wanted to avoid feeding tubes. Of course we knew feeding tubes alone didn’t cause death, but no rational discussion could excise the geneticist’s correlation.

To his credit, the orthopedic surgeon made a strong case. “A feeding tube will improve everyone’s quality of life. It will be easier for you to regulate calories. Additional weight gain will improve his overall health. Benjamin won’t have to take his twenty-seven daily pills by mouth. It will be easier for others to take care of him in the future.”

Distracted by my tears, John and I struggled to explain our resistance. The surgeon was calm yet clearly frustrated. “Why are parents so conflicted about feeding tubes? Benjamin will be the same child.” His longing for an answer haunts me.

When we first met this surgeon, some thirteen years ago, John and I had liked him right away. He recognized Benjamin’s total well-being—beyond orthopedic issues—and our daily challenges. Today we appreciated his desire to teach us lessons we might not be ready to learn. But that’s not an easy task.

When you have a child with a rare brain malformation, a fragile lifespan, whose development won’t exceed an infant’s, every decision is heavy. John and I try to gauge Benjamin’s vitality. We look into the future, when Benjamin most likely will no longer be with us. Then we ask ourselves, “Are we making the right choices? If he doesn’t wake up tomorrow, will we still be able to sleep at night?”

We have fought Benjamin’s disorder with seizure medications, orthopedic surgeries, physical, occupational, and alternative therapies. We’ve pushed him to live because we love him and we know he loves us. Not one day has been easy. Nature has not been kind to Benjamin, but he’s alive and he’s happy.

I want the surgeon to understand the depth of my emotions. I don’t want Benjamin to need a feeding tube. It’s foreign, unnatural, and that state of being already holds us captive. It will be a visual reminder of his dependence, as if everything else weren’t reminder enough. It will scar his flesh, the belly I kissed when he was a baby and still do. It threatens a familial social bonding activity, and we have so few of those. It will move us even farther away from normal, and a part of us will always feel denied. It will pin him onto predicted medical statistics, and for the past fifteen years we’ve been fighting for Benjamin’s right to a place in this world devoid of numerical markers.

Every invasive procedure scars my soul, threatens my humanity, my place as Benjamin’s mother. Every time a doctor needs to intervene my fears build like a tsunami after an earthquake. In order to give my son up to a doctor, I have to push myself under the wave. I’m always in a state of drowning. Drowning my motherhood.

One of Benjamin’s doctors suggested that parents harbor guilt about feeding tubes because we feel as if we’ve failed to sufficiently nourish our child. It’s a reasonable explanation, but guilt is so much more complicated for parents like me. When Benjamin is suffering, I feel guilty for giving him this life and with every intervention for giving him the means to survive it.

I don’t imagine these realizations are uncommon for parents with children who have severe disabilities. Perhaps the surgeon’s vision of outcome just differs from ours. He believes a feeding tube improves quality of life. But “quality of life” does not have one static definition. Just because something might seem better, doesn’t mean it will make life better. There is nothing that will make our lives better. Perhaps it will be more manageable once we’ve adopted the new norm. But better? No.

Still, hoping to give Benjamin a chance of greater comfort, John and I decided to schedule the feeding tube surgery. We believe it’s the right choice, although I’ll never be happy about it. These are feelings I am well accustomed to.

Benjamin has a team of eight different specialists caring for him. After all these years of sitting in their offices, I like to think I understand the culture in which medical professionals live. I know I have really only strained to see through the peephole. It is the same for doctors. I don’t expect anyone to “get” my truths because mine are a pair of glasses that fit only me. I can give them to this surgeon, but all he’ll get is the reflection of his assumptions, judgments, and perhaps a blurred sense of my reality.

I am haunted by the illusion of the doctor/patient relationship. There is a tenuous line between clinical provider and compassionate caregiver. I’m not sure how far to nudge that distinction. I expect my emotions to influence my choices. That’s my burden. I need doctors to give me concrete facts and their best medical judgment so that I can make rational decisions. I am thankful that Benjamin’s orthopedist strives to understand the family behind the patient, but I don’t want anyone to obstruct his ability to do his job. Not even me.

Joanne De Simone lives in New Jersey with her husband and two sons.  She’s a special educator and writer. After Joanne’s “Bury My Son Before I Die” piece was published on Brain Child, she was interviewed on Huffington Post Live. Click here to watch the video.



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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When Your Child Can’t Compete

When Your Child Can’t Compete

By Nicole Matos

9MusesMeandAlexThose bumper stickers that read, “My karate star can beat up your honors student”? Those sometimes make me cry.  I’ve got neither a karate star nor an honors student. At the moment, my son—quirky, funny, enthusiastic, endlessly beloved by my husband and I—is something I don’t hear many parents in today’s culture talk about.

He’s not especially good at anything.

This isn’t just my perception, but an actual diagnostic category.  His official diagnosis has shifted around over the last few years, but one possibility is what is termed PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). In favorable company, I like to re-letter this as PDD-WTF?, since it essentially stands for behind the average in multiple areas for reasons unknown. Jack of all trades—and until I had a child who struggled to learn, it had escaped me how many “trades” the average day involves—master of none.

The very nature of my son’s disability, at least at the moment, means that he can’t compete favorably—not academically, not athletically, not socially or emotionally—with other children his age.  But it doesn’t rescue him from the need to: from the clarion call of a competitive, capitalist society, or the inner drive, so natural and human, to look at others and compare.

And, perhaps most problematic, it doesn’t rescue me from my own displaced competitive drives, from my own desire to be an achiever who produces other gold-star achievers, from the universal temptation to read my son as a synecdoche of self.

“Everyone has a talent,” we are told. But such a thing, were we to quantify it, would not be mathematically possible.  I’ve become well-versed in the language of percentiles, of subscores and cohorts, and as of now, my child falls between the 3rd and the 18th percentile of every area in which he has been tested.

Sure, he might be underperforming—perhaps with time and with therapies, these numbers will change. “Someone‘s got to be in the 11th percentile,” my husband says, well-meaning, as my eyes welled up over yet another less-than-stellar, less than even average, report. “The 11th percentile is normal, it is someone’s normal.” Yes: it is our normal, Alex’s normal.  I just never knew—nothing every prepared me for—how that would feel.

I think of it as Average Privilege—something like White or Male Privilege, the invisible-to-its-hosts constellation of unacknowledged benefits that accrue to parents when their children are, well, at least average: the middle of the pack.  We can all image what it is like to envy the honors student, the music star, the wrestling champion.  But to the parent of a child with a mild disability, every city is in fact Lake Wobegon, where all the children are above (your) average.

Parents with Average Privilege receive social credit for and are positively reinforced for the clear cause-and-effect of their efforts and sacrifices.  “Reading already!” the elderly lady beams, to the mother and child sounding out words ahead of me at the drugstore.  The mother replies, eyes shining, “I read to him every night.” I also read to my son every night, but he is not reading yet, and I don’t know when he will.

Parents with Average Privilege receive compliments on their children that are both believable and bankable; that is, they represent a legitimate area of competitive ability, and they are a talent they can envision their child cashing in on, building into some sort of productive future. “Sarah is such a graceful dancer;” “Nevaeh might be a mathematician someday;” “Jorge is quite a writer—way to go!”

What I’ve heard is “Alex tries so hard.” And though I do not dismiss the honor and integrity in the compliment—I cling to its promise of persistence, more than you know—I’ve heard it way too often, because it is too often the first obvious “good” thing there is to say.

Parents with Average Privilege can walk up to a bulletin board without fear. Even if their child’s art is not the absolute best, they can unconsciously trust it is likely not to stand out.  I never walk up to a bulletin board without girding my loins; the chance is good that my child will be the contrast that adds gilt to your Lily—not once or twice, but each and every time.

And parents with Average Privilege never need to hide these competitive feelings—admittedly self-centered, damaging to all if not critically examined—or to worry that they will be seen as some sort of monster, cold-eyed, unloving, if they admit these feelings are there.

In the end, there’s lots about my son that is exceptional that isn’t captured in testing.  But more to the point, there’s lots that is important about him, valuable, meaningful and precious, that might not ever be, necessarily, exceptional.  That’s a value system that isn’t espoused enough, even and perhaps especially, in the world of children. When supposedly public school systems stratify students by selective enrollment, and when bad parenting is assumed to be the evil behind a child’s social and behavioral difficulties, families like mine are only the first to feel the pain.

Because, all else aside, my husband is right: there’s always someone, 49% of us to be exact, making the best out of something less than average, and we deserve some measure of privilege too.

Nicole Matos is a Chicago-based writer, professor, roller derby girl, and special needs mom. Her work has appeared in Salon, The Classical, The Rumpus, theNewerYork, The Atticus Review, Full Grown People, and others. Follow her on Twitter at @nicole_matos2.

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Love Regardless

Love Regardless

By Roberta F. King

noah scans-118I tried to pluck it from him because I thought it was one of my stray curly hairs. I seem to lose a lot of them and they appear on my dark clothing, on our black car seats, between book pages and occasionally in food I’ve cooked.

Just after a shower, Mike carried our fifteen-year-old son, Noah, who was swaddled in a big blue towel, from the shower chair in our bathroom to his bed, where I was waiting to put pajamas on him. I instinctively pulled on the hair down there. It was stuck.

“Ouch!” Noah said. The little blonde curly hair was his own, his first pube.

“Mike, come in here,” I called out to my husband. “You need to see this—Noah has a hair, several hairs, down there.”

Noah winced and blushed. “Mom, don’t…”

“I noticed it a while back,” Mike said as he entered the room.

“And you didn’t mention it, why?”

“I thought you already saw it. Saw them,” he said as he tried not to laugh. “Before too long he’ll have a pencil-thin moustache and a wife.”

“I’m cold,” Noah said, as he lay naked and still wet on the towel as we discussed facial hair and upcoming weddings.

When you dress and undress your child for years, you notice all sorts of things. Noah had a dark mole on his left butt cheek and for fun, we called him moldy butt. Sometimes when Mike carried him over his shoulder, like a bag of charcoal briquettes, from shower to bedroom, he’d stop, unveil Noah’s moldy butt, and I’d give it a gentle slap. Laughing, Noah would warn us, “Butt splash!” as if his butt was so wet it would splash water on our faces.

Most parents don’t have to bathe their kids or see them naked after they’re done with elementary school. But, kids with severe disabilities, especially those with mobility issues, rely on their parents or other people for personal care throughout their lives. Noah, because of his cerebral palsy was no different in the care he needed at three, ten or seventeen years old. Despite his disability, we never thought of him as helpless. He told us what he wanted and what he was thinking. He had opinions and ideas, but, without our help, he couldn’t execute his physical intentions. As his parents and caregivers, we were part of his private moments, as well as the everyday tasks that most people don’t think about.

Parents understand the organization needed to venture out with a baby. With a disabled child, the organization grows and becomes more complicated as the years pass. Kids become teens, get bigger, heavier and longer and often need help just as they did when younger. We became expert life planners. I’d always imagined that Mike and I were hippie-like people, free and easy-going, but the reality is, we might have been at one time, but by the time Noah was five, we were not. Our skill in being structured crept up on us, almost like the severity of Noah’s disability.

For normal sorts of activities, like going to Mass, we needed to structure in small, amounts of additional time. Noah needed to get into his jacket, settled into his wheelchair, out of the house, down the ramp, onto the van lift buckled and strapped into the van and then get the lift folded back into the van. At the church, we needed extra time to unbuckle and unstrap Noah’s wheelchair, lower the lift, remove Noah from the lift, fold the lift back up, roll into the church to find a pew with an empty space on the end so Noah could sit next to me, since church pews don’t quite accommodate wheelchairs. We needed extra space to turn him around to get to the back of the church and get up the aisle for communion.

We didn’t leave the house without a plan. Accessibility was always a concern—would there be steps? If so, how many? We could handle a few, but taking his chair up a flight or two wasn’t safe or easy, though we did it more than once. Before we chose a restaurant, we checked out the seating and the bathrooms—we needed a table, not a booth or a high top and a bathroom without barriers.

Part of the structure of our life was getting Noah up and moving in the morning. Sometimes, even when he was in high school we’d sneak into his room together, throw on the lights and sing, with motions, an old Girl Scout camp song: Way Up in the Sky. We sang the words loudly, startling Noah awake.

Way up in the sky,

the big birds fly,

while down in the nest the little birds rest.

With a wing on the left and a wing on the right,

the little birds sleep all through the night.

Shh, they’re sleeping.

The bright sun comes up,

the dew falls away,

Good morning! Good morning! the little birds say.

Every single day we dressed him—unless he was in wake and wear, a clothing combination of plaid flannel pants from L.L. Bean and a long or short sleeve t-shirt that could be worn for pajamas and to school. He needed his ankle foot orthotics strapped on, which required a few minutes of foot stretching. He also wore a splint on his clenched and tight right hand. It gave him more range of motion and flexibility. Nothing with Noah was fast, easy or uncomplicated.

Mike usually fed Noah breakfast while I dressed for work. When they were done eating, I came in with a hot, wet washcloth to de-crustify his face and brush his teeth. “Ouch! You’re hurting me,” Noah said, thrashing away from me as I attempted to wipe sleep from his eyes or remove egg matter from around his mouth. Moving through the morning routine, the next stop was the toilet (a large potty chair over the toilet with a big belt that Velcroed around his waist) where we put him and where he sat captive until one of us came to get him. Sometimes he told us he had to go, other times we just put him there when the time seemed right, like in the morning. It was all part of our rigid organization. Neither of us wanted our teenage son pooping his pants.

“I’m done. I pooped,” he called out. “Come get me!”

“Are you sure?” I’d tease him from outside the door.

“I’m sure.”

“You better be sure,” I said.

Mike and I sometimes debated who would do the wipe and toilet dismount. It usually depended on who was running ahead or behind schedule that morning.

Leaning Noah forward onto the toilet, I’d have a wad of paper in my hand to wipe his butt.

“There’s no poop in there,” I said looking into the bowl.

“Just kidding,” Noah said. “I’ll poop at school.”

“That’s weird, you’re a school pooper.”

Noah laughed at the idea of being a school pooper.

As a toddler he could feed himself—not really well, but good enough. By the time he was three, the tone and spasms in his hands and arms increased and he began to fling food or poke himself in the face with a fork.

“Come on Noah,” we coached. “Steady does it.” We guided his arm, hand and fork toward his mouth. We tried to feed him things that would stick on a fork. Chunks of cheese, scrambled eggs, macaroni and individual peas worked well.

“I can do it,” he said and then the idea, the excitement of success kicked in and his hand would spasm and off went the food. Meals with Noah feeding himself lasted at least an hour, and the food intake was minimal. So we fed him when he was a toddler and when he was a teen. We never thought much about it or how it might look to others when we went out to eat. It was just normal to us.

Disability makes for a close family mostly because accessibility makes friendships for disabled kids difficult. If there are steps to a friend’s home, or a playground isn’t accessible, the kid in the wheelchair is likely to be left out. Even when there’s a desire for inclusion, the logistics of moving a kid in a wheelchair without a specialized van is a challenge. We did as much picking up and dropping off as we were able, but it wasn’t enough for Noah to develop the deep friendships that other kids enjoy as they become teenagers. That continual contact that kids have with one another from about middle school to high school just didn’t exist for Noah. There were no sleepovers, video game hangouts, car rides, prep sports events, or dates for him. He had good friends in school, there were kids he talked about and socialized with during the day. He’d talk with kids on the phone sometimes, but after school and on weekends, it was just family. Mike and I were Noah’s parents and his best friends. If it bothered him that he had no close friends, he never mentioned it or complained to us. Of course, we wished things were different for our son, but that kind of normal would never be our reality.

As I did almost every night since he was a baby, I put his pajamas on him, first one damp foot, then the other, trying not to catch his toe on the fleece material. As I pulled the top over his face I hesitated, leaving him trapped. His wet hair was all I could see.

“Let me out. Help!” he said, his voice muffled. I waited a minute and laughed as he rolled his head around and finally escaped the neck of the PJs. I kissed his shampoo-scented head, propped him with pillows, then shut off the lights and left him to dream the dreams of a teenage boy.

Roberta F. King lives in Muskegon, Michigan and is the VP of PR & Marketing at Grand Rapids Community Foundation. Her articles and essays have been published in Atticus Review, Boiler Journal, Hippocampus and Lifelines (Dartmouth College Medical School). Her memoir about the life and death of her son Noah will be published by Principia Media in May 2014. Find her at: www.robertafking.com

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The Age of Sudden Awareness

The Age of Sudden Awareness

By Marla Kiley

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Brain, Child (Summer 2004)

Illustration by Oliver Weiss

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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.

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.