Thanks to @dontplaymepayme for sending me this on Twitter:
WELCOME TO BEIRUT by Susan F. Rzucidlo
(Beginner’s Guide to Autism)
“I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It’s like this..”
There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he’s like your in-laws, and you did marry into the family. It can’t be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don’t know where you are. What’s going to happen to you? Will you live through this? This is the day you get the diagnosis. “YOUR CHILD HAS AUTISM”!
There you are in Beirut, dropped in the middle of a war. You don’t know the language and you don’t know what is going on. Bombs are dropping “Life long diagnosis” and “Neurologically impaired”. Bullets whiz by “refrigerator mother” ” A good smack is all HE needs to straighten up”. Your adrenaline races as the clock ticks away your child’s chances for “recovery”. You sure as heck didn’t sign up for this and want out NOW! God has over estimated your abilities.
Unfortunately, there is no one to send your resignation to. You’ve done everything right in your life, well you tried, well, you weren’t caught too often. Hey! you’ve never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She’ll call you soon. You feel like a lab rat dropped into a maze.
Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.
There is always some new “miracle” drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You’re excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You’re insurance company refuses to provide therapies for “chronic, life long conditions” and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child’s life with the stroke of a pen. You’re exhausted because your child doesn’t sleep.
And yet, hope springs eternal.
Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they’ll understand, they are living through similar times. For those people you will be forever grateful. Don’t get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.
But, there are lulls in wars, times when the bullets aren’t flying and bombs aren’t dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.
I think this is beautiful, and can be applied to any special parent and/or any special child.
By Jill Cornfield
If you have a baby with obvious problems, sooner or later someone will hand you an essay called “Welcome to Holland.” It compares having a baby to taking a trip—a valid enough metaphor. But this is a trip for the parents of “special” children. Instead of going to Italy, as they’ve planned, the parents wind up in Holland, where, Emily Perl Kingsley writes, the pace is slower. They are disappointed at first—they’ve dreamed about, planned and looked forward to Italy—but they come to appreciate the special beauty of Holland. Instead of Michelangelo, espresso, and churches, they come to love Rembrandt, tulips, and chocolate. For what it’s worth, some parents find solace in the metaphor. I’m just not one of them.
Our older son spent his first thirteen months in the hospital. He was a tiny baby, our first-born. My obstetricians—a quartet of women—were used to a more orderly sort of pregnancy. They were equipped to handle morning sickness, slightly high blood pressure and routine C-sections. When our baby was found to be way below the average weight on a sonogram, they stopped making quips about junk food and put me on bed rest. They grew increasingly distant as our son stubbornly refused to somehow make up the weight gain and catch up with the rest of his second-trimester cohort. Gradually my doctors handed me off to the high-risk doctors at the hospital, where I was ordered to leave bed rest and come in for daily sonograms, my main form of entertainment. “I promise you won’t be bored when the baby comes,” one said.
From the beginning, it seemed like a bad idea to have a baby delivered more than twelve weeks before term, but this is what the doctors planned. “We’ll take him out and they’ll make him grow,” said one perinatologist, referring to the neonatal intensive care unit (NICU) where he’d be placed. This sounded far-fetched to me, and I didn’t say anything, but I must have looked doubtful because she declared, “A lot of parents are really glad to have the baby out and in the nursery where they can take care of him.”
This was the day I went in for a sonogram and the perinatologist came in, went behind the curtain, and looked at the technician’s numbers. She sighed loudly before greeting me. “I’ll pray for you,” she promised. Meanwhile, the baby (I didn’t know he was a boy yet) zoomed around inside me, back and forth, over and over, in the vastness of my uterus, his tiny size making him hard to find on the sonogram but giving him lots of room to dive and roll. How bad could things be when the baby was so lively?
We spoke to the head of the neonatal unit, a dapper man with a silvery goatee who spoke in calm, measured tones. He didn’t think it was out of the ordinary to have a baby delivered between twenty-six and twenty-eight weeks’ gestation. “Most of our babies go home around the time of their due date,” he informed us. “At twenty-three, twenty-four weeks, things are rough. But you’re looking at something like a ninety percent survival rate.” My husband asked him what had led to his interest in prematurity. “All three of my children were premature,” he said, and we believed him, though we later found out they were premature for having arrived two to three weeks—not two to three months—early.
We were afraid to ask the real questions. Would our son walk? Talk? Would he walk with us to the local kindergarten, or would he ride the short school bus? We reasoned that the doctor would tell us anything we really needed to know.
Nothing prepared me for the sight of Alexander: one pound, five ounces. I’d used more butter than that to make flourless chocolate cakes. I spent about a week in a crying marathon, which made the intensive care nurses very uncomfortable, although one nurse sang to me and then said, on our second day there, that it was all right to cry and that the baby was still connected to me. I found this somehow comforting, even though we hadn’t done a very good job, Alex and I, of making him grow.
“Did he have a brain bleed? Does he have necrotizing enteral colitis? No? Then he’s fine,” snapped my cousin, who is a doctor. But I was not happy, not hopeful. Everything—including breathing, eating and medical adjectives my spell-checker didn’t recognize—was a struggle.
People tell you with the best of intentions that you’ll find yourself on a roller coaster in the NICU: There are ups and downs, good times and bad. We found it to be more like a game of pinball, with our little son playing the part of the metal ball that gets smacked around. Our highlights included intubations, painful eye exams, and spinal taps without anesthesia (“We don’t like to anesthetize these little ones—it’s too dangerous,” said the ophthalmologist), an almost total lack of weight gain (“It’s hard to gain weight on the vent,” said one doctor ruefully, although they had always been so enthusiastic about the benefits of artificial respiration), a respiratory virus that landed our son back on a ventilator, chemically paralyzed so he wouldn’t fight the vent down his throat (still no anesthesia). “Well,” said the neonatal attending physician, “I’ve seen children get this and get over it. And I’ve seen children get this and not get over it,” prompting my brother-in-law to say, “Sounds like the doctor’s taking it pretty well.”
All our “happy” news was happy only by dint of not being tragic. An X-ray: the baby’s lungs are less cloudy! An eye exam: the baby isn’t going blind! A head sonogram: the baby’s brain isn’t bleeding!
Our two months’ stay turned into three, then four months. I watched summer shimmer on my way to the hospital each day. Then leaves were falling. Then I had to dig out winter clothes.
Our insurance company paid and paid without comment the bills for $19,000, $38,000, $16,000. I think when we were all done, thirteen months later, the total topped out at close to a million, a figure that had been negotiated downward by insurance.
* * *
“It’s slower-paced than Italy, less flashy than Italy,” writes Kingsley in “Welcome to Holland.”
I was confused when someone gave me Kingsley’s essay during Alex’s second month or so. We certainly didn’t know at that point that he would be disabled in any way; we certainly didn’t know we were in for many more months of invasive medical presence in our lives. Did the person who gave me “Holland” think Alex would be mentally retarded? Did she think I needed a different lens to view our experience as one that was beautiful if you looked at it the right way?
It turns out that lots of people with babies in the NICU (Neonatal Intensive Care Unit) are given the Holland essay, a piece I think is completely off the mark for anyone with an extremely premature baby, because Kingsley specifically says, “It’s just a different place.”
But most NICUs aren’t just “different.” Most NICUs are alarmingly alien. You have to adjust to flashing monitor lights and tiny sirens, the nurses and doctors and residents and fellows and social workers and sub-specialists—pulmonologists and gastroenterologists and geneticists and neurologists and radiologists and administrators—that come and go. You learn a hierarchy and a discipline you never dreamed you’d have to learn just to have a baby.
Our NICU experience has forever separated me from mothers of typically developing children, even though since the birth of my second son I’m the mother of a typically developing child myself. Watching women—other mothers—leave the hospital with their babies, balloons, and still-swollen bellies filled me with jealousy, rage, and misery. Rage that I’d been put in this situation. Jealousy over what they had and what I’d lost. Misery that the sight of someone else’s happiness filled me with hatred.
Soon after I read “Holland,” a therapist breezed into the isolation room we shared with another family and introduced herself. “Hi! I’m back from maternity leave!” she said. Unable to smile and greet her pleasantly, I settled for a mumbled hello, looking down at some knitting that I’d intended to be stress relieving.
Kingsley writes that it’s important to note that you’re not in a “horrible, disgusting, filthy place, full of pestilence, famine and disease.” But the experience of having a baby in the hospital is akin to being tortured in a Third World prison, leading many NICU survivors to write their own parodies and responses to Kingsley’s piece. A mother I know wrote “Welcome to Afghanistan.” Another friend agrees that having a baby in the hospital is like taking a trip to Holland—under German occupation.
Two pieces floating around the Internet—”Welcome to Beirut,” by Susan F. Rzucidlo and “Holland, Schmolland” by Laura Kreuger Crawford—give the perspective of life in another country from mothers of autistic children.
“Are they kidding? We are not in some peaceful countryside dotted with windmills,” writes Crawford. “We are in a country under siege, dodging bombs, trying to board overloaded helicopters, bribing officials—all the while thinking, ‘What happened to our beautiful life?'”
“Bruised and dazed, you don’t know where you are . . . You don’t know the language and you don’t know what is going on,” writes Rzucidlo. “Bombs are dropping . . . Bullets whiz by.”
We now live in “our own country, with its own unique traditions and customs,” says Crawford. “It’s not a war zone, but it’s still not Holland. Let’s call it Schmolland.” She goes on to describe Schmutch customs, which mirror the traits of autism. “The hard part about living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren’t always successful.”
“Holland” has apparently struck a deep nerve.
Parents of autistic children find “Holland” particularly irritating, I think, because the stresses of living with a child who is semi- or non-communicative are tremendous. There are no smiles from sympathetic native speakers. You don’t speak the language, and there’s a real chance you never will.
“Holland” makes it seem as though disability is a one-size-fits-all package tour, when disabilities and their effects on families are as finely shaded as the differences among pensiones, hostels, and four-star hotels. Most families learn to cope with mild dyslexia, but most parents of severely brain-damaged children generally grapple with serious depression throughout their lives. It feels like “Holland” is telling us not only not to feel sad, but to feel happy in a specific way. Like the hospital personnel who seemed amazed or put out whenever I expressed sadness or anger, Kingsley seems to believe that emotional responses can be generated consciously, and that a little positive thinking is all that’s needed to smooth some ruffled travel plans. Hey, it’s not a canceled boat ride or a closed museum. It’s an adventure!
How should I feel? “Holland” told me, back in those NICU days, that I should feel good. But I didn’t. There is a crumb tossed at the end, where Kingsley acknowledges that the disability of a child is indeed cause for sorrow, calling it “a very, very significant loss.” You’ll feel sad, she says, but if you focus exclusively on the sadness you’ll miss out on the beauty of the life of your child. The mother of another premature baby wrote that her problem with “Holland” is that it was always sent to her by someone without a disabled child, and it made her hesitate to express any negative feelings—”kind of like they were saying, ‘This is how you should feel. Now no more talk about pain, grief, depression, and exhaustion from you!’ “
To the social workers and perinatologists who claimed that parents are thrilled to have a live baby—even one in a hospital—I can say only that not everybody responds identically to similar situations. One mother used to post on an online board for the parents of premature babies. Her child was in the NICU for eighteen days, and I used to wonder why she would post messages at all when so many of us had children who spent months in the hospital. Now I realize that those eighteen days were hell for her—a nightmare that she still relived—and that her worries for her child were every bit as real and valid as mine for my son.
* * *
At the same time parents are struggling with their baby’s NICU course, they are reassured by NICU staff that all will likely turn out well. The prevailing NICU attitude was (and still is) that most premature babies do just fine. That more than sixty percent of babies with a birth weight over three pounds grow up without significant disability.
But my gut always said otherwise, and seven years after the NICU, our son is, in fact, developmentally disabled. Not delayed: that implies he will catch up with other children. When Alex was three, the school board reviewed his evaluations and classified him as a child with significant and severe delays, about fifty percent in most areas, qualifying him for a funded special-ed preschool with built-in therapists. We were glad, because it was what he needed. We were sad, because it was such a clear-cut case.
By now, I’ve had plenty of time to reflect on the sort of expectations Kingsley writes about in “Holland.” I never wanted brilliant children. I never dreamed of my children going to Princeton, Yale, Harvard, taking the academic world by storm in physics or comparative literature. All I really wanted was a baby to play with and some more company at the dinner table. I imagined taking walks in late winter, looking for trees in bud and the first crocuses, discussing how little birds sometimes take their baths in water, other times in dust. I looked forward to all the school stuff–the mimeographed homework assignments and gluey projects and teachers mean or nice and leaving the house on a dark October evening for open school night after a hurried spaghetti dinner.
In the NICU days I used to pray that Alex not be retarded, that he not have cerebral palsy, which I always thought meant not being able to talk. What I didn’t foresee was a child who would hug affectionately and even kiss, sort of, but be so lukewarm about reciprocating anything, from a word to a ball to a willingness to engage in play.
Today Alex is six and a half. He is a child with PDD-NOS, pervasive developmental delay, not otherwise specified: a notch on the autism spectrum. In theory, that puts us quite squarely in Kingsley country. Where once we had a small baby and some hopes of a typical life, we realize now we live in a strange land we didn’t plan to visit.
For years we didn’t go anywhere, and it seemed that having a child with a communicative disorder was more akin to staying home while other parents traveled: we watched them take off for the Hamptons or the Netherlands while we were stuck in the same hot neighborhood. Instead of rejuvenating changes of vista, we summered on steamy streets. While other people spent some time in air-conditioned airport lounges before arriving at beach houses or charming old-world cafés, we were left with nothing more cooling than the sprinklers in city parks and an occasional Mr. Softee truck.
In fact, life with Alex brings to mind not travel, but a different metaphor. Alex is a cat of a boy: smaller than average, he’s sleek and slim. He has my dark eyes and his father’s dark hair and sometimes, it seems, the mannerisms of a cat we used to have—a quiet, self-contained creature who didn’t often seek attention or affection, though he did welcome it. If Alex has a toy or a puzzle or a video he likes, he doesn’t need you.
When your child can’t tell you what’s bothering him, whether it’s a fever or nausea or a bad day at school, it’s not so very different from a sick pet. I never knew how simple a child’s illness could be until my younger son got into bed with me late one night, hot and crying. “My ear hurts!” he moaned. He had Motrin; we went back to sleep; we went straight to the doctor in the morning and said, “He says his ear hurts.”
Alex’s teacher for kindergarten and first grade writes daily to let us know if he seemed tired or enjoyed circle time. If not for her detailed letters, we’d never know that he was doing yoga, that he is fond of carrying around a plush hippo, that he seems to like spending time with his classmate Robert, never know what the red Special Olympics ribbon was for: courage, sharing, joy. What did he share? What gave him joy?
We live in a Hispanic neighborhood where the neighbors know Alex and seem fond of him, perhaps because they have a relative or another neighbor with an autistic child. “Alex is drinking from the puddle at the sprinklers!” they’ll holler at me on the playground. When he rummages through their strollers or bags, they laugh and let him. Often they share with him the chips that attracted him. Occasionally they gently lead him away.
In the playgrounds of more moneyed neighborhoods, we get the looks. Yes, I know he’s in someone else’s stroller. I know he’s taking a plush Elmo doll from a toddler who is walking with her Jamaican nanny. I know he’s spinning with his eyes shut, or leaning too far back on the swing, his expression different from other children’s. Why am I not getting up every fifteen seconds to stop him? If he’s in someone’s bag, I will intervene. But the toddlers are always well attended. The spinning or lapping from a puddle isn’t hurting anyone. And I need to sit in the sun, on this bench and, for a moment, not chase, not intervene.
Perhaps my biggest problem with Kingsley’s metaphor is that it simply doesn’t hold water. A traveler can always catch the next flight out, but no matter which parental country you find yourself in—whether typically developing or autistic or wheelchair-bound—you can’t fly out again.
Author’s Note: Ironically, in the United States outcomes for children born prematurely are poorer than those of their counterparts in the Netherlands, where neonates below specific birth weights and gestational ages are generally not resuscitated.
Brain, Child (Summer 2005)
Jill Cornfield lives in New York City with her husband and two sons.
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