Love Is Not Enough: A Mother's Memoir of Autism, Madness, and Hope
288
Love Is Not Enough: A Mother's Memoir of Autism, Madness, and Hope
288eBook
Available on Compatible NOOK devices, the free NOOK App and in My Digital Library.
Related collections and offers
Overview
Jenny vows to do whatever she can to help Lucas connect with his parents and others and live an independent life. Tossed between hope and despair, she begins a frantic effort to research the best among many competing therapies and find exactly the right treatment for her son. Her obsession takes her to the brink of exhaustion—and over, when she suffers a psychotic breakdown and must be committed to a psychiatric clinic. There begins another journey, to find her balance and recover her strong, healthy life, before she can begin again to fight for her son.
Both brutally honest and deeply affecting, Love Is Not Enough is a page-turning memoir that offers insight into autism and what a parent goes through for her child.
Product Details
| ISBN-13: | 9781628724714 |
|---|---|
| Publisher: | Arcade |
| Publication date: | 01/06/2015 |
| Sold by: | SIMON & SCHUSTER |
| Format: | eBook |
| Pages: | 288 |
| File size: | 1 MB |
About the Author
Jenny Lexhed and her husband now have three children. In 1995, they founded the speakers bureau Talarforum in Scandinavia, which has grown to seventy employees and more than eight thousand speakers in its network. Now sixteen, Lucas has learned to communicate, read, write, and do math; he is an independent and happy young adult. Jenny has become a sought-after speaker in Scandinavia and a contributor to various publications. She and her family have lived since 2013 in Florida. Visit her website at www.jennylexhed.com.
Read an Excerpt
CHAPTER 1
HELP ME!
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.
No one anywhere.
Just me.
Alone.
I rest my forehead against the cool windowpane, and tears run slowly down my cheeks.
CHAPTER 2HAPPINESS
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.
CHAPTER 3BIRTH
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 and 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 electric shocks. In emergencies, they use laughing gas, nitrous oxide.
Early on in labor, the pain is manageable, but 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.
CHAPTER 4THE FIRST SIGNS
It's midday, just past twelve. People crowd the main entrance to the Åhléns 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 Åhléns 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.
CHAPTER 5NEVER GOOD ENOUGH
It's nighttime. Lucas, who's one and a half, is asleep in his room, next to our bedroom. Carl 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 Carl, 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. Carl 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 Carl 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. Carl 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 Carl 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 Carl. 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 Carl 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. Carl storms in with Lucas in his arms, their silhouettes are clearly defined against the blinking lights.
"I can't stand it anymore! 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 Carl'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. Carl 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.
Carl'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.
CHAPTER 6DIFFERENT
Lucas is small, only two years old, when I begin to fathom and admit to myself that he's different. It's difficult to say what it is that sets him apart from other children. Initially, it was mostly a feeling, an uneasy omen of the great grief that was to strike us. He is our first-born, and we had no experience of how a child develops and behaves in the different stages. Otherwise, we would probably have reacted sooner.
At the age of one, he could name some things and made an effort to say words when he wanted something, even if he sometimes used the same word when he meant different things, but now he seems to have lost what he once knew. He says almost nothing. It seems like he has regressed. If he wants something, he pulls me along and points to whatever it is. He points, but otherwise he uses no gestures to communicate what he wants to say. He neither shakes his head nor nods. He often gets frustrated and angry when I don't understand. He screams, kicks, and hits.
He often doesn't react to direct address and doesn't respond when we call his name. He can't do what we ask him, unless he can read the situation and understand what is expected of him. If I ask him to pick up a ball that's in front of his feet, he can give me the ball, but he can't go into another room and fetch a ball. We start to wonder if he might have a hearing problem. But does he? When I say, "Candy," he comes running immediately.
He has poor eye contact, except for a few occasions when he's highly motivated, like when he's playing chase. He can play that game endlessly. He's totally focused, and he screams with excitement when we chase him around the house. His eyes light up then, and his gaze is intense and follows our gazes.
Many other times, he is entirely closed in his own world and is hard to reach. He goes off and only wants to watch cartoons and animated movies. Pingu, a stop-motion clay animation series about a little penguin and his family, is a favorite that he watches repeatedly. Short, simple, and very clear little stories, with sound effects but no words. Lucas becomes engrossed with the animation and gets hysterical if we turn off the TV. He seldom sits still while watching TV but runs back and forth. He bounces and jumps with both feet, up and down. Sometimes he drives around in his red Bobby-Car, a small plastic car that he maneuvers expertly. He gets up speed and drives straight over the parquet floor in the living room, then makes a sharp turn, just in time to avoid the recliner in one corner, skids around, and drives back. He backs up and deftly handles his little car like no one else.
His motor development is very good. He began walking on his first birthday, and now, at the age of two, he has a good sense of balance. He climbs around and likes to balance along the back of the couch. However, he doesn't seek out physical contact in the same way other kids do. He doesn't like to hug and cuddle. If I'm sitting on the couch, he may climb up on my back, hug me from behind, and press his chin really hard against my head. If I'm standing somewhere, he may come over, take my hand, and press his chin into it, hard. He seldom sits still, and in his search for contact we become like two magnets that repel instead of attract each other, for his advances are hard and often hurt. Sometimes, when he's very tired, he can sit still for a while in my lap. These are short periods, all too seldom, but I take advantage of every chance I get to hold him.
(Continues…)
Excerpted from "Love Is Not Enough"
by .
Copyright © 2008 Jenny Lexhed.
Excerpted by permission of Skyhorse Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Foreword by Per Naroskin,
Preface to the English-language Edition,
Help Me!,
Happiness,
Birth,
The First Signs,
Never Good Enough,
Different,
Disappearances,
Speech Therapist,
No Time to Lose,
Plan of Action,
Another Way to Learn,
Denial,
Which Method Should We Use?,
The Evaluation,
Seven Days in February,
Have We Chosen the Right Method?,
My Own Method,
My Thoughts Begin to Spin Faster and Faster,
The Boundary Between Dream and Reality Disappears,
Ward 22,
The Spirit of Healing,
Starting to Recover,
Released,
Back to Reality,
Lucas Starts Preschool,
Letter to Lucas,
Medical Examination,
One More Child,
Birthday Party,
The Hairdresser and the Dentist,
Behavioral Therapy — ABA Again,
Sorrow,
Pregnant Again,
Getting Started,
Three Words,
Training,
Pregnancy,
Activities,
A New Paraprofessional,
Daring to Believe,
Skis,
Riding a Bike,
Eyeglasses,
Food,
School,
Afterword,
Acknowledgments,