Arcade Publishing • New York
Copyright © 2008 by Jenny Lexhed
English-language translation copyright © 2015 by Jenny Lexhed
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First English-language Edition
The author has changed some names for reasons of privacy.
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Cover design by [TK]
Cover photo credit [TK]
Ebook ISBN: 978-1-62872-471-4
Printed in the United States of America
To my dear mother-in-law,
for all you have done for our son and our family.
There are no words to do you justice.
Foreword, by Per Naroskin
Preface to the English-language Edition
The First Signs
Never Good Enough
No Time to Lose
Plan of Action
Another Way to Learn
Which Method Should We Use?
Seven Days in February
Have We Chosen the Right Method?
My Thoughts Begin to Spin Faster and Faster
The Boundary Between Dream and Reality Disappears
The Spirit of Healing
Starting to Recover
Back to Reality
Lucas Starts Preschool
Letter to Lucas
One More Child
The Hairdresser and the Dentist
Behavioral Therapy—ABA Again
A New Paraprofessional
Daring to Believe
Riding a Bike
All parents can empathize with anxiety over the risk of your child having a disorder. With being torn between wishing it were only your imagination and the persistent vague feeling in the pit of your stomach that won't be dispelled by reassurances. It may disappear for a while, but only to return when a new warning sign manifests itself.
In most cases, our fears are unfounded, but sometimes there is something that is not right. Love Is Not Enough is Jenny Lexhed's story of the creeping suspicion that their first child, Lucas, is not like other children. She describes the reluctant, difficult movement toward a painful insight. The book isn't only a story about the search for the correct diagnosis or the best treatment. It's about a parent's struggle to gain respect for her child from her community, despite all the diagnoses.
When I was at school to become a psychologist, knowledge in Sweden about autism was very limited, and the common hypothesis was that autism, in some vague manner, was caused by the parents' inability to embrace and bond with their child. When I read Love Is Not Enough, I think about all the suspicion these parents were subjected to. It's painful to imagine the burden of guilt that must have been placed on them, not to mention the feelings of powerlessness and vulnerability.
Theories about autism are being developed constantly, even though many questions are still unanswered. Some professionals still harbor preconceived notions, but many of us have developed a more nuanced view. We don't lay the blame on the parents anymore. Most of us have realized that the parents need support, even if support alone is not enough. In addition, many therapists have realized that the parents must be closely involved for the therapy to be effective.
It's hard not to be drawn into Jenny Lexhed's description of being lost in a forest of contradictory theories about autism and about the effectiveness of various treatment methods. For her, the never-ending hunt for knowledge led to a psychosis, which becomes understandable when you've followed her in her unrelenting efforts to comprehend, to put firm ground beneath her feet. Her weeks in the psychiatric ward are a nightmare in her account. Despite the fact that her depiction of her time there is free of anger and accusations—or maybe because of this—it becomes difficult to shy away from the huge shortcomings in psychiatry. The contrast between Jenny's ambition to put her son's needs before her own and the inability of psychiatry to listen to Jenny's own deep distress becomes heartrending.
Stories like this are critical for those of us who work in health care and education. They place the uniqueness of human existence at the forefront and increase our ability to empathize. That empathy is what gives us the power to develop treatments, support, and educational methods fitted to the needs of the individual patient and parent.
This is an important book, which can help other parents and families walking down similar paths. It will undoubtedly make it easier for them to find their way and help them feel a little less alone. And perhaps it will help them perceive the sunlight, even when things look very dark.
psychologist and psychotherapist
Preface to the English-language Edition
Love Is Not Enough is a bestseller in my home country, Sweden. It has been read by the mothers, fathers, relatives, and friends of people on the autism spectrum or with other disabilities, and by people going through a life crisis. But it has also been read by many others who simply treasure true-life stories.
I started writing because I wanted to put words to my feelings, to understand things better and make it possible to put hard times behind me. I took a writing class and received very positive feedback from my teachers, who encouraged me to publish my story. At first the thought frightened me, because I had really written from the heart and what I wrote is extremely frank and revealing. Would we want to share our life, our ups and downs with everyone else? Then I remembered that, when I first realized our son was different, it helped me a lot to meet other parents and hear about their experience. I figured sharing our story could possibly help others and maybe make their life a little easier. So I decided to send the manuscript to several publishers, and three accepted it right away!
When the book was released, it received many positive reviews, and the media coverage was extensive. I was interviewed in newspapers and magazines, did radio interviews, and appeared on TV shows. From being reluctant to publish and share our story, I now had to face standing in the spotlight, which I wasn't used to and certainly hadn't desired. All of a sudden, I had to talk about having a son with autism and what it was like when I was committed to a hospital after suffering a psychotic breakdown caused by stress, exhaustion, and lack of sleep. This last part we had kept a secret, and only our close family knew. Writing the book, though, gave me the confidence I needed to stand up and acknowledge what had happened.
The fact that a few years had passed also made it easier. Our son was doing well, and I myself was leading a healthy life and working at our business. I wanted to show other people that it is possible to come back after going through tough times. The truth is, in the year 2001 I had an isolated psychosis due to a highly stressful life event in combination with a lack of sleep. Since then I have not had any relapses, and I'm not on any medication. I know, though, how important it is to lead a balanced life, and I always see to it that I get enough sleep (sure, sometimes it's less than it should be . . .), eat healthy, exercise, have time for myself and my friends, and most of all have time for my family. Having a loving family around me is a blessing.
After the book was published, I received many public speaking requests. I hadn't done a lot of public speaking before and I wasn't thrilled about getting up on a stage and sharing our life. The first request came from the chief of staff at a mental ward. The hospital that had recently hired her was going through a transformation. Her background was in hospice care, and at her new job she was horrified by how they treated their patients. She wanted to incorporate the caring attitude that she was used to from hospice care. At the hospital, they had recently done a forced injection to a patient, and it had been an awful situation. She had read my book; she knew what I had gone through during the time I was committed and wanted me to come and share my story with the staff. I thought she was brave to change the way things worked on the ward, so even though I was scared to death, I accepted. If I could help the ward attendants, nurses, psychologists, and doctors to understand what a patient goes through and have them change their standard practice, then my fear of public speaking would be a small price to pay.
My lecture was for a small group of only fifteen people (which is much harder than talking to a hundred: a small group is more intimate, and you get much closer to your audience), but the lecture went well. The caregivers were somewhat hostile at first, because they thought I was just going to criticize their way of working, but they softened after hearing my story, and there was a great discussion afterward.
That was my first public speaking engagement. From that day it rolled on, and over the years I have had more than a hundred engagements. I am of course far from perfect, but these days I have a lot more confidence when giving talks. One of my events was for an audience of nearly a thousand people and was broadcast on national television in Sweden. That was a challenge, and I prepared thoroughly for it in advance. I was, of course, very nervous. In situations like that, I calm myself by thinking of what I have that's best, and that is my family. Thinking of my kids gets me grounded and relaxed, because I know that even if I mess up and don't deliver a perfect speech, they don't care. They'll always love me, and that's what's important.
Besides having reached a broad audience, the book is also used in various educational programs and at universities, in courses like special education, psychology, psychiatry, and others. There are just so many things you can teach with facts, but reading about a real-life experience gives you insight that's priceless.
I receive many emails from readers and people who have heard me speak. Though I'd been hesitant at first to publish the book, I now know that I've touched many people out there, and I know our story has made a difference. One email I got was from a teenage girl. She had been committed to a psychiatric ward but was back home again. She had been depressed and wanted to end her life but now was feeling better and had read my book. She wrote that reading about my struggle gave her the strength she needed. She realized that she would overcome her own hardship and was inspired to fight on and keep on living. That email really warmed my heart. Another email I got was from the mother of a child with autism:
We fight, struggle, and argue for the sake of our kids. No one gives me the extra energy to make it through the day except, yes, my wonderful little daughter, whose laughter reaches way down into my soul. And my wonderful, proud son, who protects his sister at all times! And then there's your wonderful book. I bought it for all my relatives, and I'm giving it to anyone having a birthday. Through your words, they will better understand my life. Your story describes, purely and without varnish, what it's like to struggle for your child, to struggle until you go crazy, and then get up again and continue the struggle. Many thanks to you for taking the time and energy to bravely write Love Is Not Enough.
I hope my book touches you as well.
Jenny Lexhed, 2014
I dedicate this book to my mother-in-law. She is the one who has taken the most responsibility for our son's training. In doing so, she placed the unconditional love of her grandchild at risk, but she put his development before all else. Much to our joy, their relationship has deepened from all the time they've spent together. My mother-in-law is an outstanding person, and we're lucky to have her in our lives.
Thanks also to all the other people—therapists, teachers, doctors, relatives, and friends— who meet our son with an open mind, who encounter him with love, warmth, and respect. You must know that you're important. You're making a huge difference in his life.
Love Is Not Enough
Can anyone help me? Get me out of here! I go to the light switch by the door again. I flick the ceiling light on and off, my only way to communicate with the outside world. I let it shine for three short seconds, then three long, three short: S-O-S.
When I've turned off the light, darkness sinks into my room on the seventh floor, my prison, Ward 22. I cross over to the window and look out into the dusky summer night on its way toward dawn. I peer out over parking lots, buildings, houses, and homes.
Is nobody there? Nobody listening, hearing, or seeing?
No one anywhere.
I rest my forehead against the cool windowpane, and tears run slowly down my cheeks.
Three years earlier, I'm sitting at my office desk, gazing over Johannes Park in Stockholm. It's early December, and the snowfall is light and flakey. It swirls slowly outside the window. A lone man passes by with his dog. A sudden pain inside my stomach, high up under my ribcage, is uncomfortable, and I move to change position. It's my first contraction, but I only realize that later on. I'm at the end of my first pregnancy. My baby is due in little more than a week, and I'm trying to finish some business and clean off my desk.
The office is lively. Telephones are ringing everywhere. People are answering them, chatting and laughing. There are ten of us working here now. The company is thriving, and we're being written up in the press. When we started out, it was just the two of us, my husband Carl and me. Talarforum is our company, our baby, in which we invest all our waking hours, from early mornings to late at night. In those early days, we worked out of a basement in Vasastan, a vibrant, fashionable neighborhood near the city center.
That was back when people still faxed each other, and the Internet hardly existed. We run a speakers' bureau and make our living on the spoken word. "Speech is golden" is our motto, in contrast to the adage, "Speech is silver, but silence is golden." We help businesses and organizations find the right speakers for conferences and courses. We seek out speakers who have a burning devotion and desire to share their knowledge and experience, from politicians, CEOs, and experts to celebrities and performers.
I remember how Carl and I met just a couple of years ago: Moved in together, started a business together, got engaged, got married, bought a house, and now, soon we'll have a baby. It's all happened so fast, and it's been great. Sometimes I wonder what we did to deserve it all. Life can't get much better.
Lucas is born on a cold winter's day. It ends up being a long, drawn-out labor. The clinic believes that birthing should be natural, since there's less risk to the baby or mother. They believe it's safe to trust your body's own capacity to give birth. To ease the pain, they recommend warm baths, yoga, hypnosis, mental exercises, acupuncture, and TENS –transcutaneous electrical nerve stimulation—tiny electrical shocks. In emergencies, they use laughing gas, nitrous oxide.
Early on in labor, the pain is manageable and, when it begins to feel too hard to handle on my own, I try TENS. It doesn't eliminate the pain, but at least I have something else to concentrate on—small, irritating electric shocks. After many long hours, the contractions ebb. The doctor doesn't want to wait, because my water broke the day before and the risk of infection is high. They give me something to bring on new contractions.
My labor pains accelerate again: strong, constant contractions, with no respite between them. It feels like my body is going to explode, and I fight the contractions instead of giving in and trying to relax. A succession of contractions wracks my body. The pain is intolerable, and I beg for laughing gas. I clutch the mask to my face, enter the clouds, and stay there. The gas makes me unaware of my surroundings but heightens the sense of pain, rather than dampening it. Finally, I can't stand it and ask for an epidural, but it's too late, the final-stage contractions have begun.
Forty-five minutes later (the worst forty-five minutes of my life), he is born. Lucas is blue on arrival. I barely get a chance to see him before they whisk him off, clean out his windpipe, and spray oxygen over his face. Soon, Lucas comes around, and I can hold his warm, soft little body on my stomach. He crawls up and finds my breast. A small miracle.
Is there anything softer than a newborn baby? New skin, soft and unblemished. I brush my lips over his velvety forehead and inhale his perfume. What if you could preserve that feeling in a little jar? A jar you could bring out and open from time to time, to remind you of life's wonders.
The First Signs
It's midday, just past twelve. People crowd the main entrance to the Åhlén's City department store. Efficient businessmen and women enter the doors with decisive strides, running errands on their lunch breaks. There are people everywhere, but they flow smoothly and without bumping into each other, to the escalator that takes them up into the upper stories. Others stroll about idly, trying out perfume and looking at makeup in the cosmetics department here on the ground floor. Two teenage girls giggle with joy when a sales clerk helps one of them apply some eye shadow.
Lucas and I are waiting for an elevator. All the moms know that the best changing room in town is on the fourth floor of Åhléns. It is large and well organized, with couches to sit on and nurse your infant, several tables for diaper changes, toilets for moms and dads, a play area for siblings, and a microwave for heating baby food. It's on the same floor as the children's clothing department. When you've finished caring for your little ones and they're fed and satisfied, there's always time to look for some new garment they may need. The people at Åhlén's know how to get parents to shop.
The elevators take a while. I see that both of them are on the top floor. Next to me is another mother. In her arms, she's holding a little boy with curly brown hair.
"Hola, guapocito, mi cariño," she addresses him in Spanish.
She kisses, cuddles, and teases him.
She tickles his ribs. He wriggles, trying to avoid it, nearly choking with laughter. Then he sees me. Maybe I'm staring, I don't know. My gaze meets his. He turns serious, his lips pucker, and I wonder if he's going to cry. But then he breaks into a giant smile. I smile back at him, and his brown eyes sparkle. He hands me his pacifier. It's blue and white, with a little brown bear printed on the middle.
"How nice," I say and hand it back to him.
It looks like he nods before quickly stuffing it back in his mouth. His eyes are still sparkling.
I turn to his mother and ask, "How old is he?"
"He'll be six months next week," she answers in broken Swedish and strokes his cheek.
"He's very sweet," I say, and she smiles.
I look at my own son. He has a tight grip on the edge of the carriage. He's just learned to sit up and still tumbles over easily. He seems entirely unaware of the little boy his own age right next to him. Lucas sits with his face turned away.
What is he watching? I follow his gaze. Maybe it's the small white table fan spinning on the counter over there, maybe something else. I don't know.
Ding! —my thoughts are interrupted. The elevator is here, and the doors open. People exit, and we enter. It's crowded. Two baby carriages, elderly ladies, young girls and men. A lady in a green coat stands close to Lucas. She smiles at him and tries to catch his attention, but he ignores her and looks in another direction. She seems disappointed. I watch the little Hispanic boy. He's smiling at anyone who looks at him, fully enjoying all the attention.
Faces don't seem to mean anything to Lucas. Strangers don't interest him at all. He's more fascinated with physical objects, like spinning fans or a fountain that sprays water, but also with shadows playing on the wall or bright lights. I think back to how, at his four-month checkup, I asked the doctor why Lucas didn't want to look at me or meet my gaze. She asked me to hold him close, turn him toward me, and say something to him. He took a quick look and then turned away.
"There, you see?" she said. "He looks at you just fine!"
"But just quickly," I said.
"Don't worry. He's still little. He'll react more and more the older he gets."
She had no idea how wrong she was.
Never Good Enough
It's nighttime. Lucas, who's one and a half, is asleep in his room, next to our bedroom. Calle and I are sleeping in our big double bed with Sara, our newborn baby. We bought the biggest bed we could find, so the kids would also fit in. It's more than six and a half feet wide and brimming with soft pillows and a couple of fluffy down comforters.
I wake up to Sara's small head searching and butting me. She's hungry. I give her a breast, and she settles down. We lie on our sides with our bodies close. I can feel the warmth of her. Her tiny body vibrates when she breathes. I caress her head. Her hair is so soft. She is four weeks old. I stretch for the alarm clock under the pillow and press the button that lights up the face. It's two thirty. I always sleep with a clock nearby. Lucas wakes up many times every night. It's important to get to him quickly so he can go back to sleep. If we wait too long, it can be impossible to comfort him. He can cry for hours, and nothing helps. I always want to know what time it is, so I know if there's any chance of getting him to go back to sleep. If it gets to be around five or five thirty, it's often better to let him get up. The clock also serves as my nightlight. If Sara can't find my breast, I can use the soft light to help her out.
Suddenly, I hear Lucas begin screaming in the room next door. I need to move fast. I nudge Calle, who's snoring beside us.
"Cut it out," he mutters in his sleep.
He's impossible to wake when he's in a deep sleep. Since Lucas was born, I always sleep with one ear open and wake up at the slightest sound. I give him a harder push
"Lucas is awake. You need to go get him."
"You go, I'm asleep," he slurs.
"I can't. I'm nursing Sara. Get a move on before he gets hysterical."
Lucas's screams are louder and louder. Calle is completely out of it and doesn't seem to hear a thing.
"Come on," I say and pull the blanket off.
"What the f—?" he says, pissed off.
"You have to go get Lucas! He's screaming."
"Jeeesusss . . . Can't a man get any sleep? I've gotta work tomorrow."
He finally gets up, but Lucas is screaming to the high heavens.
"Try and give him some carrot juice," I say carefully. "It's on the table by his bed."
When I stopped nursing Lucas, we gave him formula. He refused to use a pacifier, so when he woke up at night, we gave him a bottle of formula to get him to go back to sleep. It turned into a vicious circle, since he woke up so often. Sometimes he would drink as much as four bottles a night. He had no limits and could drink until he vomited. When we weighed him at the children's health clinic, he'd gained almost nine pounds in four months and we stopped giving him formula. Instead, we changed to carrot juice, which he liked. He didn't drink as much, but it was enough to give his skin a yellowish glow. People would comment on what a healthy tan he had.
I'm in bed and can hear how Calle tries to comfort him. He walks around, carrying him, singing and shushing him, but Lucas won't calm down. On the contrary, he screams even louder.
Door hinges squeak, and I hear they're in the bathroom. Calle turns on the shower. The heavy jets echo against the slate tiles. I know he's steaming up the shower to make it resemble a steam bath. Then they'll stand in the dampness while the shower continues spraying water. The dimmed ceiling light shines on a pillar of fog in the dark room. Sometimes the moisture and heat have a calming effect on Lucas, but not this time. His cries ring in my ears. The two of them stand there for a long while, but the screaming doesn't stop. Then Calle wraps him in a towel, and they go out onto the balcony. The chilly September air surrounds them. Sometimes, the shock of the chill makes Lucas hesitate, quiet down, and forget what he was doing, but not now. The crying won't stop tonight. The full moon is high in the night sky and lights up the two on the balcony. I wonder what the neighbors are thinking.
In my mind, I blame Calle. Why didn't you get up when I told you to? Why did you wait so long? You know how he can get, how it just escalates.
After a while, they come in again. They go into Lucas's room. I hear Calle trying in vain to give him a bottle. I wonder, how can a child scream that long?
Suddenly, the bedroom door is thrown wide open and the light from the big Nacka communications tower shines straight into my eyes. Calle storms in with Lucas in his arms, their silhouettes are clearly defined against the blinking lights.
"I can't stand it any more! It's impossible to calm him. Damn it!" he shouts and throws the bottle of carrot juice at the wall.
The juice splashes everywhere, on the wall, the bed, the nightstand. Sara wakes up and starts crying. She's already used to Lucas's cries but not to Calle's shouting.
"You're out of your mind!" I shout. "Why are you doing that? Now you woke up Sara too!"
"Here, take him."
He nearly throws Lucas down on the bed.
"You get him to calm down, then. You're his mother. You should be able to get him to stop."
Then he leaves, and I'm alone with two screaming children.
I pick up Lucas, who's crying so hard he's shaking. I put him on one side of me and hold him close. We stay that way for a long time. The kids scream, and I weep. Sara calms down after a while, and somewhere around early morning Lucas goes to sleep too. I lie awake for a while longer. I can hear the TV downstairs. Calle has fallen asleep, exhausted, on the couch.
We do everything possible and then some, but it's still not enough. It never seems to turn out right. It's undermining our parental self-confidence, and we feel powerless.
Calle's feeling of inadequacy, about not being able to reach Lucas, leads to frustration and is transformed into anger, which never leads anywhere. It just makes things worse. He often thinks I'm the one who's in the wrong, that I should do this or that instead, I should learn to understand Lucas so I can comfort him correctly. It's just that there's never a correct way to do it.
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