Like Sound Through Water: A Mother's Journey Through Auditory Processing Disorder
Autor Karen J. Foli Cuvânt înainte de M.D. Edward M. Hallowell M.D.en Limba Engleză Paperback – 21 iul 2003
This is Ben's story.
He was a happy, healthy boy -- a mother's dream come true. Yet by the age of three, Ben's development was significantly delayed: He couldn't make sense of the simplest phrases, and he still hadn't started talking. When Karen Foli finally took her son, Ben, to a speech and hearing clinic, she was told that he was "probably retarded and perhaps autistic." But Karen knew that Ben was highly perceptive, even frustrated by his inability to communicate. Trusting her "mother's intuition," Karen set out on a journey to learn the truth about her son's condition....and what she found was APD.
A person with auditory processing disorder receives jumbled and distorted sounds. But the ability to hear is usually normal. Even though it affects millions of Americans, APD can be difficult to diagnose and challenging to treat. Through years of research, and personal interviews, Karen Foli learned everything she needed to know about APD in order to help her son achieve the greatest gift of all: communication. Like Sound Through Water is her story -- winning, inspiring, and true.
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Specificații
ISBN-13: 9780743421997
ISBN-10: 074342199X
Pagini: 304
Dimensiuni: 140 x 214 x 23 mm
Greutate: 0.29 kg
Ediția:Reprint
Editura: Atria Books
Colecția Atria Books
ISBN-10: 074342199X
Pagini: 304
Dimensiuni: 140 x 214 x 23 mm
Greutate: 0.29 kg
Ediția:Reprint
Editura: Atria Books
Colecția Atria Books
Notă biografică
Karen J. Foli holds a Ph.D. in communications research from the University of Illinois. A writer who is also a registered nurse with years of experience in teaching, clinical practice, consultation, and research, she lives in Nashville, Indiana, with her husband and their three children. Visit her website at www.karenfoli.com
Cuprins
Contents
Acknowledgments
Foreword by Edward M. Hallowell, M.D.
Introduction
One A Healthy Baby?
Two The Evaluation
Three Through the Looking Glass
Four Separation
Five Purgatory
Six Merry Christmas
Seven Inertia
Eight First Impressions
Nine Riddle Solved
Ten I Can Hear That
Eleven A Child's Labor
Twelve Feeling Sound
Thirteen Down and Up
Fourteen Entering the System
Fifteen Liberty
Sixteen Hindsight and Help
Epilogue One Year Later
Resources
Acknowledgments
Foreword by Edward M. Hallowell, M.D.
Introduction
One A Healthy Baby?
Two The Evaluation
Three Through the Looking Glass
Four Separation
Five Purgatory
Six Merry Christmas
Seven Inertia
Eight First Impressions
Nine Riddle Solved
Ten I Can Hear That
Eleven A Child's Labor
Twelve Feeling Sound
Thirteen Down and Up
Fourteen Entering the System
Fifteen Liberty
Sixteen Hindsight and Help
Epilogue One Year Later
Resources
Extras
Chapter One: A Healthy Baby?
I pushed one final time and felt a tremendous release of pressure. Ben burst into the world, and I heard him gasp his first breath of air. A few seconds later, when he was nestled against my tummy and I counted ten fingers and ten toes, I felt an intense psychological relief that my baby was healthy. Healthy. That's what I believed.
"He looks good," my doctor proclaimed, her eyes excited above the blue surgical mask.
My husband, John, hovered above me and smiled.
"He's okay?" I asked.
"He's great."
And as my eyes met Ben's -- a precious first connection -- I thought so, too.
The pediatrician came into my hospital room the next morning and echoed the same opinion. Ben's Apgar scores had been high immediately after birth, meaning his circulation and respirations were good. Aside from his high bilirubin count, which caused his skin to have an orange/yellow tint or jaundiced appearance, he seemed fine. Ben was released with me to go home. The following three mornings, John and I brought Ben to the hospital for a blood test that checked his bilirubin count. It never exceeded the point that would have required Ben's hospitalization. We pushed fluids -- formula, since my milk hadn't come in fast enough. Ben's body needed to cleanse itself of the bilirubin as soon as possible. The fourth day's blood draw showed a dramatic improvement in his levels. And again, I celebrated the health of my firstborn.
It had been a hard pregnancy. In the sixth month, I was hospitalized with hyperemesis, which meant I couldn't quit vomiting. But I figured it was well worth it. John and I wanted this child so much. We'd met later in life, after John had established a private practice in child psychiatry, and I'd turned in my dissertation toward my Ph.D. in communications. Our marriage took place a little over a year after our first date, and Ben arrived the following year. We didn't plan it that way. It just happened.
So when I had Ben at age thirty-two, I was more than ready for him. That's not to say I knew what I was doing. I was never one of those teenagers who baby-sat. Kids made me nervous. They were unpredictable, uncontrollable, and messy.
Six months after Ben's birth, John and I were reading in bed, enjoying a peaceful end to another busy day. Our baby was upstairs safe and asleep. Suddenly, long, incessant cries from the upstairs nursery broke the silence.
After a few minutes, I looked over at John. I always looked to him when I didn't know what to do. There's something in my husband that I'll never have. It's a quiet demeanor that at first meeting can come across as a weakness. But I knew better. It was a subtle strength that didn't need to advertise itself to the outside world. He kept it in reserve for those around him -- especially for his patients and me.
"Just let him cry it out," John said. "Sometimes, babies just need to cry."
I forced myself to lie back and sighed. "Okay."
Silence. I didn't move, expecting any motion would somehow reach Ben on the floor above me. Maybe John was right. Ben was okay. He was just overtired. And there wasn't anything to do.
My eyes looked at the dresser where the nursery monitor sat. It was the type with bars of lights that responded to the noise in the room. The bars sat in their dark slots, waiting.
I blinked and saw an eruption of new cries. The bars seemed to blow off the side of the box. I shot a glance toward John. Although he was a specialist in children's development and mental health, I was a mother. At that instant, I was more knowledgeable. I threw off the covers, and my bare feet skimmed along the hardwood floors and up the stairs to Ben's bedroom.
I reached Ben's doorway, and he stopped for an instant when he saw me, clearly outraged at being put off for so long. I picked up his hot, strong body and curled him against me in the rocking chair. His nine-month sleeper barely fit him. Its white terrycloth stretched around his plump knees. My feet pushed to get the rhythm of the chair going.
"You're all right, sweetheart. My Benny." I pressed my lips against his moist head of light brown hair that was just beginning to bend in gentle waves. I was amazed at the softness of what was new to this world. He squirmed as if wanting to get down.
"No. Time to go na-na." I used the word from my childhood for sleep.
Ben turned his face toward me, and I watched him wrap tiny fingers around the button of my nightgown. I gently laid his head against my chest, hoping the rocking motion, a soft hum, and the closeness would help him to relax and go back to sleep.
He faced me again, as if expectant, waiting for me to tell him something. The August moon glowed throughout the room, bringing a calm to the night. The gentle light reflected off Ben's pug nose and round eyes, his mouth open and smiling. My perfect baby. An overwhelming sensation came over me.
"I'll always hear you, Ben. Listen for what you need."
His brown eyes, smaller versions of mine, peered at me.
I know he didn't understand the promise I was making to him that night. It was more than just a commitment of not leaving him alone in his crib. It was a pledge that for as long as I lived, I would do everything that I could to make sure he was okay. That I accepted my responsibility to prepare him for the world he would someday face without me. And I made this promise with a smile on my face, feeling his warm, even breath upon my arm as he slept. His legs curled against my abdomen, bent in a natural ball, as if reminding me that he'd spent less of his life outside than inside me.
What I didn't know that night was that my promise would be tested much sooner than I'd thought.
I love to read. I love to write books and stories. It followed that I would read to Ben. When Ben was about two and a half, we had a Winnie the Pooh "first-word" book that he liked to look at. John and I would sit with him and go over the words after his bath.
"Look, Ben, there is a bee. Bzzzzzz. Bee," I said and pointed.
Ben pointed and looked away.
"Here's Piglet. Piglet."
Ben sat there and made a soft utterance. "Ulg."
"Good Ben! Now here's Kanga and Roo."
Silence.
I leaned back, my eyes watching Ben. I'd read that book for weeks. Night after night. Sometimes, Ben would utter an intelligible word, but not consistently.
Later that evening, after Ben had gone to sleep, I said to John, "He's not getting it. He's not talking." I looked over at him, across the kitchen table. His blue eyes stared back gently, yet I could see some uneasiness. "I don't understand. He laughs, he's cuddly, but he's not talking."
"He will. I was a late talker."
"Is he okay?"
"He's fine." John rested his large, protective hand on mine. "He's a great little guy."
"I know he's a great little guy. I didn't say he wasn't. All I'm saying is that he's not talking, and he should be."
John remained silent, but I sensed that he was listening closely.
I poured more water into my glass and offered John some. "Ben's only saying a handful of words. Like 'doggie or boggie,' 'hi,' 'wow,' 'mama,' 'papa,' and 'all gone.' And the phrases that he says are run together so closely, you can hardly understand them." I paused, trying to think of an example. "Like, 'whereyougoin?' and 'whatisit?' He should be saying a lot more by now, right?"
"Kids develop at different rates." John put his hand over his glass, indicating he'd had enough to drink. "Let's give him a little more time. Don't worry. We'll keep working with him."
I wondered. And hoped. Maybe I started to deny that it was anything that couldn't be outgrown. After Ben was born, I'd decided not to go back to work. I'd spent the second decade of my adult life working and earning various degrees. I'd been a bedside nurse and an administrator, a healthcare consultant, taught in schools of nursing, and conducted research. It was time for a break, and I'd been advised that the preschool years went by too quickly. So, I'd kept Ben home with me. Now I was worried I'd deprived him of experiences such as preschool and playgroups that would have stimulated his language skills. My guilt had begun.
At the time, things seemed okay. By age one, Ben would play games with us, running back and forth as we caught him in our arms. He'd walked at nine months, strengthening his leg muscles on his husky frame. He'd also interact with us in a give and take of toys.
But his preverbal years -- when he was one and two -- were marked with gibberish, and he often didn't attempt sound or speech. When we spoke to him, he would often look at us in a puzzled way. If I put a tape in the stereo, he'd go to the speakers, trying to sense the vibrations. Yet he'd turn when his name was called, respond to affection and abrupt sounds in his environment, and when scolded, become tearful and sad.
And we'd added another child to our family, Peter, twenty-eight months younger than Ben. Our second son favored his father in fair coloring and blond hair. Ben looked like me with brown eyes, olive skin undertones, and curly hair. I started to tease John that Ben looked like me on the outside, but was like him on the inside. I'd heard that life grows exponentially when a second child is added, but we weren't prepared for what that really meant. Getting Peter's sleep cycle straightened out, well-child visits to the doctor, John's demanding professional life, and Ben's toddlership made for a busy pace at home.
Ben's compliant nature and sweet disposition diminished concerns over his lack of speech at well-child visits. At his two-year checkup, the doctor, John and I decided to take a "wait and see" approach to his speech development, to give Ben some more time. I'd also noticed Ben was a toe-walker when he first started to walk. The doctor would make offhanded mention of it, but I never pursued an explanation.
I knew next to nothing as far as early childhood development. John would explain it to me; he was my expert. He was the one who'd completed a fellowship in child and adolescent psychiatry, after his general psychiatry residency. He was the one who devoted long hours day after day to the assessment and treatment of children. No, my husband knew more than any pediatrician when it came to his own son's development. And I needed someone to explain what I was seeing in our three-year-old son.
"So what does toe-walking mean? Is it a big deal? Why does everyone keep mentioning it?" John and I were in the car, a rare night out -- a Date Night. We were headed to a favorite restaurant.
"It's what they call a 'soft-neurological sign.' I wouldn't worry about it."
"What's that mean exactly?" I wondered if I wanted to know.
"It means," John explained in his soft, unassuming clinical voice, "that there may be something else going on with the child. It's not like a paralyzed arm, which would be a clear indication that something was severely wrong neurologically. This just means something may be going on. Not that something is going on. In Ben's case, I don't think there are any other deficits to be concerned about."
I took a breath. "I don't know. He doesn't play with his toys like I'd expect. Have you noticed? Take that box of sticks he keeps beside him. He even has one that he looks at a lot. And he stacks his toys in a nestlike pile, then examines them. Does he have any -- I don't know -- characteristics of an autistic child?"
"No," John answered immediately. "Autistic kids live in their own worlds. They don't have correct perceptions of their environment or the things in it. It's not Ben." John shifted his weight. "He's on target for his gross motor skills. He's affectionate. He likes to play with us. He knows the difference between something that's alive -- like the dog -- and something that's not." He steered the car into the parking lot of the restaurant.
"Have you seen that puzzle piece he likes to look at?" There was a Donald Duck puzzle that had large plastic pieces to it. Instead of trying to fit the pieces onto the board, Ben had become fascinated with one particular piece.
"He's all right. Look how he makes his needs known nonverbally."
I looked at John skeptically.
John continued, "He'll climb into his high chair when he's hungry. He points to things around him. He's even a bit on the dramatic side when he's trying to talk to us with his 'ohs' and 'wows.' And he loves to cuddle."
"Especially with you. It's like you two are glued together. I can't get him to sit still in my lap like you do." I caught a pleased look on John's face after my last comment and got out of the car, reaching to take his hand. There was an invisible bond between Ben and his father. Although I spent the majority of time with Ben, the two of them had this silent understanding of father and son.
We went inside and were greeted by the restaurant hostess. The local patrons as well as the tourists in the area favored the food there. Fried biscuits and apple butter were a famous side dish. We'd moved to the area a couple of years earlier -- it was a much smaller community than Indianapolis. The dining room boasted a large hearth and limestone chimney that rose to the ceiling. It was a warm place, not just because of a generous fire going. It was a safe place.
John and I continued to talk about how late speech ran in his family. I recalled my mother-in-law telling me that one of her daughters was a late talker. One day, the little girl was looking at a jar of pickles and uttered, "pickles" clearly and loudly. That was that. Her talking began. I prayed to God that Ben would follow a similar pattern.
"I had a slow start with lots of things. In school, too, I was not what you'd consider a bright kid," John said after we placed our food order.
I took a sip of water, feeling puzzled and curious. "I didn't know you had such a rough time."
"Yeah, our housekeeper, who also watched us three kids, thought I was hard to manage. I remember being told to go outside a lot. And later, in grade school, I had a tutor and speech therapy. I think it was mostly for articulation."
But John's voice seemed light and matter-of-fact, like none of that history was very important, except to assure me that Ben, too, would be okay. We continued to eat and talk, reaching a consensus that Ben would be all right.
Peter was almost one and a really sweet baby. Slept well at night. Smiled all the time. Preverbal and verbal skills right on the mark with enough understandable words to make me comfortable. We just needed to start thinking about how to get that pacifier out of his mouth.
John had been asked to be a guest lecturer to the medical students. His topic: "Growth and Development."
"Why don't you videotape Peter? He's about as textbook as you can get. He's walking -- although a bit unsteadily -- reacts to us, and likes finger foods. I love it when he babbles and grins like he's telling us a big joke. Have the students guess how old he is."
John thought about it, but wasn't sure. My old teaching days kicked in, or perhaps my frustration at not teaching kicked in. "I think it'd be good for them to see it. Growth and development is so dry. Let them see Peter eating, cruising around, going up and down the stairs."
John started to nod. And I added, "We'll have the tape to keep -- you don't use the video camera nearly enough."
It was left unspoken that we couldn't have taken a similar recording of Ben.
Our date night turned into a running dialogue of the boys. But something inside me fluttered and twittered. Deep, deep down. What was going on with Ben? When I was pregnant, I'd worried constantly about having a healthy baby. The nurses would catch me crying in bed while I was hospitalized, wondering what was wrong. The IV in my arm, filled with a cream-colored fluid, ached from the awkward position, but I didn't care because it meant my baby was getting nutrition. And if my baby was being fed, then he'd be all right. Now, I wondered what had happened. What had gone wrong? Was Ben going to catch up? Or did it all mean something more serious? I literally shook my head to try to forget those thoughts.
Everything would be okay, I thought as I reached for my third biscuit.
Our home in the country had everything we wanted. A big, blue, salt-box shaped house, a creek, a pond, seventeen acres. Lots of space and lots of privacy. As Ben grew into his third year of life, I often thought of it as a sanctuary. A place where I could keep him safe, away from neighborhoods with kids who were quicker, sharper, and more able to tease him when he couldn't keep up. I envisioned losing him -- he wouldn't even be able to say his name. I bought a harness, a yellow strap with Velcro closures, so I wouldn't lose him when I shopped.
On an early summer day, my parents came for a visit. My father, an elderly Italian man, was standing across from me as I washed the dishes. My hand knocked the green pot scrubber over the counter, and it fell to the other side of the kitchen island. Ben stood next to my father, and I said to Ben, "Pick that up for me, honey."
Ben looked at me, puzzled. His eye contact was good. I sensed he knew I was speaking to him. "Pick it up." I leaned over and tried to point to it.
d
Ben faced the floor, but didn't move. Then he stared at me again with a blank expression on his face. "Oh, dee."
My father's eyes caught mine. I could see the sadness in them, the pity for me, and the worry for Ben.
"Pick it up!" My voice rose, and my hands fisted under the cold soapy water. I waited and Ben stood immobile. I turned to my father. "Why doesn't he pick it up?"
"He doesn't understand you," my father said evenly. "He just doesn't understand." He stared at Ben, and then, finally, his old eyes turned away.
Ben's face grew serious. He had this ability to sense the emotional wattage in the air. I swallowed, desperately not wanting to cry, and thanked my dad as he handed me the pot scrubber.
After the incident in front of my parents, I decided to try to engage Ben in more active play. I sat with him at the kitchen table, trying to entice him into coloring. He preferred his whale collection or his blankets around him. He loved to watch videos and would stare as the television screen played cartoons or Disney movies. But today, I was going to be a Good Mom. I was going to make this little guy of mine start to use his hands a bit more. After all, I had kept him home long enough. Preschool beckoned. He'd be ready to start this fall, in about five months. I just wasn't sure where.
I situated Ben at the table and held a crayon in my hand. I started to fill in the lines of the sailboat. "See Ben, fill in the bottom of the boat. I'm using a pretty shade of red."
I put a crayon into his hand. He ran the red crayon over the paper a couple of times, and let it fall out. I leaned over and tried it again. The crayon swirled around the paper and again, his hand dropped it. He murmured something unintelligible in his soft voice. Then he pointed with his finger dramatically, said, "Oh, wow!" and went into the living room.
The empty black-and-white pages of the coloring book closed spontaneously, and I put my head in my hands and started to sob. My fingers shook as I paged John.
When he answered, I yelled, "There's something wrong, John. You know there is. I know there is. He's not catching up. He's getting farther behind."
John's silence told me what I needed to know. Then he said, "I have faith in him."
"I'm getting him help. All right?"
"Of course."
"Have we waited too long?"
"No, I don't think so."
"I don't understand what's causing this."
"We'll figure it out."
"It's because I was so sick with him, isn't it?"
"No," he said.
"Was it the jaundice? We took him to the hospital every day. Why didn't they keep him?"
John's smooth, loving voice came across the line. "He'll be all right. He's got a lot going for him. He isn't autistic. Look at how much he loves us. And Peter. He's so gentle with Peter."
John had that way about him. My breathing got easier. I agreed with what he was saying. It was all true. John's strength reached out to me. Maybe it was because of all the pain and suffering he'd seen during his training at the children's hospital. I'm not sure. He didn't like to talk about it, but he'd told me about some of the dying children he'd tried to help. Whatever it was, he was able to ease my fears, provide the stability I needed. I trusted John.
ard
"Are you all right? I'm worried about you. I'll call you later today, okay?" he said.
"I'm calling someone today."
"Okay."
"It'll be all right?"
"Yes," he said.
I hung up the phone, got the directory, and started looking for help. I found the number of a speech and hearing clinic at a local university. A major university. The woman listened in a careful, neutral way with "uh huhs" in all the right places. I told her about my nonverbal little boy. And added how cute he was. How well-behaved. How he made me laugh. Despite the crack in my voice, thick with stress, she didn't veer from her professionalism or invite me in emotionally.
She explained that they had a preschool designed for kids who had language problems. There was a morning and afternoon preschool program two days a week with individual therapy offered during that time. The therapy was delivered by the students and overseen by a faculty member.
"Morning is so much better for him," I said. "He still naps." I wanted to add that he was still a baby in so many ways, but didn't. I tried to focus.
"I'm not sure what the schedule is. Why don't you call me back in about four weeks and, in the meantime, I'll put him on the waiting list. There are usually cancellations. But I'll be able to tell you more then."
She went on to tell me that the program started in the fall, a couple of weeks after the semester started. Then they'd be making the graduate student assignments. But first, the testing. We needed to bring him in for a complete language evaluation. I had no idea what that meant.
"Has he been tested before?"
"No," I said.
"He's how old?"
"He turned three in March, and this is May..."
"Has he been enrolled in any preschool program?"
"No, I've kept him home with me. I have another son, an infant, and we live out in the country."
A long pause.
I licked my lips, and waited, sure she was ready to say what a shitty mother I was, and ask me why I had waited so long to get my kid checked out. Come on, I almost said. Let me have it. Say it.
Instead, she said, "Okay. Let me give you the clinic secretary, and she'll give you a time."
After a thank-you and a transfer, I made an appointment and hung up the phone, feeling a sense of reserved hope. And fear.
Then I felt something soft against my lower arm and looked up to see Ben's hand resting upon it. He cocked his head and laid it against me, trying to tell me it would all be okay. I laced my fingers through his hair and said, "My perfect baby."
Copyright © 2002 by Karen J. Foli, Ph.D.
I pushed one final time and felt a tremendous release of pressure. Ben burst into the world, and I heard him gasp his first breath of air. A few seconds later, when he was nestled against my tummy and I counted ten fingers and ten toes, I felt an intense psychological relief that my baby was healthy. Healthy. That's what I believed.
"He looks good," my doctor proclaimed, her eyes excited above the blue surgical mask.
My husband, John, hovered above me and smiled.
"He's okay?" I asked.
"He's great."
And as my eyes met Ben's -- a precious first connection -- I thought so, too.
The pediatrician came into my hospital room the next morning and echoed the same opinion. Ben's Apgar scores had been high immediately after birth, meaning his circulation and respirations were good. Aside from his high bilirubin count, which caused his skin to have an orange/yellow tint or jaundiced appearance, he seemed fine. Ben was released with me to go home. The following three mornings, John and I brought Ben to the hospital for a blood test that checked his bilirubin count. It never exceeded the point that would have required Ben's hospitalization. We pushed fluids -- formula, since my milk hadn't come in fast enough. Ben's body needed to cleanse itself of the bilirubin as soon as possible. The fourth day's blood draw showed a dramatic improvement in his levels. And again, I celebrated the health of my firstborn.
It had been a hard pregnancy. In the sixth month, I was hospitalized with hyperemesis, which meant I couldn't quit vomiting. But I figured it was well worth it. John and I wanted this child so much. We'd met later in life, after John had established a private practice in child psychiatry, and I'd turned in my dissertation toward my Ph.D. in communications. Our marriage took place a little over a year after our first date, and Ben arrived the following year. We didn't plan it that way. It just happened.
So when I had Ben at age thirty-two, I was more than ready for him. That's not to say I knew what I was doing. I was never one of those teenagers who baby-sat. Kids made me nervous. They were unpredictable, uncontrollable, and messy.
Six months after Ben's birth, John and I were reading in bed, enjoying a peaceful end to another busy day. Our baby was upstairs safe and asleep. Suddenly, long, incessant cries from the upstairs nursery broke the silence.
After a few minutes, I looked over at John. I always looked to him when I didn't know what to do. There's something in my husband that I'll never have. It's a quiet demeanor that at first meeting can come across as a weakness. But I knew better. It was a subtle strength that didn't need to advertise itself to the outside world. He kept it in reserve for those around him -- especially for his patients and me.
"Just let him cry it out," John said. "Sometimes, babies just need to cry."
I forced myself to lie back and sighed. "Okay."
Silence. I didn't move, expecting any motion would somehow reach Ben on the floor above me. Maybe John was right. Ben was okay. He was just overtired. And there wasn't anything to do.
My eyes looked at the dresser where the nursery monitor sat. It was the type with bars of lights that responded to the noise in the room. The bars sat in their dark slots, waiting.
I blinked and saw an eruption of new cries. The bars seemed to blow off the side of the box. I shot a glance toward John. Although he was a specialist in children's development and mental health, I was a mother. At that instant, I was more knowledgeable. I threw off the covers, and my bare feet skimmed along the hardwood floors and up the stairs to Ben's bedroom.
I reached Ben's doorway, and he stopped for an instant when he saw me, clearly outraged at being put off for so long. I picked up his hot, strong body and curled him against me in the rocking chair. His nine-month sleeper barely fit him. Its white terrycloth stretched around his plump knees. My feet pushed to get the rhythm of the chair going.
"You're all right, sweetheart. My Benny." I pressed my lips against his moist head of light brown hair that was just beginning to bend in gentle waves. I was amazed at the softness of what was new to this world. He squirmed as if wanting to get down.
"No. Time to go na-na." I used the word from my childhood for sleep.
Ben turned his face toward me, and I watched him wrap tiny fingers around the button of my nightgown. I gently laid his head against my chest, hoping the rocking motion, a soft hum, and the closeness would help him to relax and go back to sleep.
He faced me again, as if expectant, waiting for me to tell him something. The August moon glowed throughout the room, bringing a calm to the night. The gentle light reflected off Ben's pug nose and round eyes, his mouth open and smiling. My perfect baby. An overwhelming sensation came over me.
"I'll always hear you, Ben. Listen for what you need."
His brown eyes, smaller versions of mine, peered at me.
I know he didn't understand the promise I was making to him that night. It was more than just a commitment of not leaving him alone in his crib. It was a pledge that for as long as I lived, I would do everything that I could to make sure he was okay. That I accepted my responsibility to prepare him for the world he would someday face without me. And I made this promise with a smile on my face, feeling his warm, even breath upon my arm as he slept. His legs curled against my abdomen, bent in a natural ball, as if reminding me that he'd spent less of his life outside than inside me.
What I didn't know that night was that my promise would be tested much sooner than I'd thought.
I love to read. I love to write books and stories. It followed that I would read to Ben. When Ben was about two and a half, we had a Winnie the Pooh "first-word" book that he liked to look at. John and I would sit with him and go over the words after his bath.
"Look, Ben, there is a bee. Bzzzzzz. Bee," I said and pointed.
Ben pointed and looked away.
"Here's Piglet. Piglet."
Ben sat there and made a soft utterance. "Ulg."
"Good Ben! Now here's Kanga and Roo."
Silence.
I leaned back, my eyes watching Ben. I'd read that book for weeks. Night after night. Sometimes, Ben would utter an intelligible word, but not consistently.
Later that evening, after Ben had gone to sleep, I said to John, "He's not getting it. He's not talking." I looked over at him, across the kitchen table. His blue eyes stared back gently, yet I could see some uneasiness. "I don't understand. He laughs, he's cuddly, but he's not talking."
"He will. I was a late talker."
"Is he okay?"
"He's fine." John rested his large, protective hand on mine. "He's a great little guy."
"I know he's a great little guy. I didn't say he wasn't. All I'm saying is that he's not talking, and he should be."
John remained silent, but I sensed that he was listening closely.
I poured more water into my glass and offered John some. "Ben's only saying a handful of words. Like 'doggie or boggie,' 'hi,' 'wow,' 'mama,' 'papa,' and 'all gone.' And the phrases that he says are run together so closely, you can hardly understand them." I paused, trying to think of an example. "Like, 'whereyougoin?' and 'whatisit?' He should be saying a lot more by now, right?"
"Kids develop at different rates." John put his hand over his glass, indicating he'd had enough to drink. "Let's give him a little more time. Don't worry. We'll keep working with him."
I wondered. And hoped. Maybe I started to deny that it was anything that couldn't be outgrown. After Ben was born, I'd decided not to go back to work. I'd spent the second decade of my adult life working and earning various degrees. I'd been a bedside nurse and an administrator, a healthcare consultant, taught in schools of nursing, and conducted research. It was time for a break, and I'd been advised that the preschool years went by too quickly. So, I'd kept Ben home with me. Now I was worried I'd deprived him of experiences such as preschool and playgroups that would have stimulated his language skills. My guilt had begun.
At the time, things seemed okay. By age one, Ben would play games with us, running back and forth as we caught him in our arms. He'd walked at nine months, strengthening his leg muscles on his husky frame. He'd also interact with us in a give and take of toys.
But his preverbal years -- when he was one and two -- were marked with gibberish, and he often didn't attempt sound or speech. When we spoke to him, he would often look at us in a puzzled way. If I put a tape in the stereo, he'd go to the speakers, trying to sense the vibrations. Yet he'd turn when his name was called, respond to affection and abrupt sounds in his environment, and when scolded, become tearful and sad.
And we'd added another child to our family, Peter, twenty-eight months younger than Ben. Our second son favored his father in fair coloring and blond hair. Ben looked like me with brown eyes, olive skin undertones, and curly hair. I started to tease John that Ben looked like me on the outside, but was like him on the inside. I'd heard that life grows exponentially when a second child is added, but we weren't prepared for what that really meant. Getting Peter's sleep cycle straightened out, well-child visits to the doctor, John's demanding professional life, and Ben's toddlership made for a busy pace at home.
Ben's compliant nature and sweet disposition diminished concerns over his lack of speech at well-child visits. At his two-year checkup, the doctor, John and I decided to take a "wait and see" approach to his speech development, to give Ben some more time. I'd also noticed Ben was a toe-walker when he first started to walk. The doctor would make offhanded mention of it, but I never pursued an explanation.
I knew next to nothing as far as early childhood development. John would explain it to me; he was my expert. He was the one who'd completed a fellowship in child and adolescent psychiatry, after his general psychiatry residency. He was the one who devoted long hours day after day to the assessment and treatment of children. No, my husband knew more than any pediatrician when it came to his own son's development. And I needed someone to explain what I was seeing in our three-year-old son.
"So what does toe-walking mean? Is it a big deal? Why does everyone keep mentioning it?" John and I were in the car, a rare night out -- a Date Night. We were headed to a favorite restaurant.
"It's what they call a 'soft-neurological sign.' I wouldn't worry about it."
"What's that mean exactly?" I wondered if I wanted to know.
"It means," John explained in his soft, unassuming clinical voice, "that there may be something else going on with the child. It's not like a paralyzed arm, which would be a clear indication that something was severely wrong neurologically. This just means something may be going on. Not that something is going on. In Ben's case, I don't think there are any other deficits to be concerned about."
I took a breath. "I don't know. He doesn't play with his toys like I'd expect. Have you noticed? Take that box of sticks he keeps beside him. He even has one that he looks at a lot. And he stacks his toys in a nestlike pile, then examines them. Does he have any -- I don't know -- characteristics of an autistic child?"
"No," John answered immediately. "Autistic kids live in their own worlds. They don't have correct perceptions of their environment or the things in it. It's not Ben." John shifted his weight. "He's on target for his gross motor skills. He's affectionate. He likes to play with us. He knows the difference between something that's alive -- like the dog -- and something that's not." He steered the car into the parking lot of the restaurant.
"Have you seen that puzzle piece he likes to look at?" There was a Donald Duck puzzle that had large plastic pieces to it. Instead of trying to fit the pieces onto the board, Ben had become fascinated with one particular piece.
"He's all right. Look how he makes his needs known nonverbally."
I looked at John skeptically.
John continued, "He'll climb into his high chair when he's hungry. He points to things around him. He's even a bit on the dramatic side when he's trying to talk to us with his 'ohs' and 'wows.' And he loves to cuddle."
"Especially with you. It's like you two are glued together. I can't get him to sit still in my lap like you do." I caught a pleased look on John's face after my last comment and got out of the car, reaching to take his hand. There was an invisible bond between Ben and his father. Although I spent the majority of time with Ben, the two of them had this silent understanding of father and son.
We went inside and were greeted by the restaurant hostess. The local patrons as well as the tourists in the area favored the food there. Fried biscuits and apple butter were a famous side dish. We'd moved to the area a couple of years earlier -- it was a much smaller community than Indianapolis. The dining room boasted a large hearth and limestone chimney that rose to the ceiling. It was a warm place, not just because of a generous fire going. It was a safe place.
John and I continued to talk about how late speech ran in his family. I recalled my mother-in-law telling me that one of her daughters was a late talker. One day, the little girl was looking at a jar of pickles and uttered, "pickles" clearly and loudly. That was that. Her talking began. I prayed to God that Ben would follow a similar pattern.
"I had a slow start with lots of things. In school, too, I was not what you'd consider a bright kid," John said after we placed our food order.
I took a sip of water, feeling puzzled and curious. "I didn't know you had such a rough time."
"Yeah, our housekeeper, who also watched us three kids, thought I was hard to manage. I remember being told to go outside a lot. And later, in grade school, I had a tutor and speech therapy. I think it was mostly for articulation."
But John's voice seemed light and matter-of-fact, like none of that history was very important, except to assure me that Ben, too, would be okay. We continued to eat and talk, reaching a consensus that Ben would be all right.
Peter was almost one and a really sweet baby. Slept well at night. Smiled all the time. Preverbal and verbal skills right on the mark with enough understandable words to make me comfortable. We just needed to start thinking about how to get that pacifier out of his mouth.
John had been asked to be a guest lecturer to the medical students. His topic: "Growth and Development."
"Why don't you videotape Peter? He's about as textbook as you can get. He's walking -- although a bit unsteadily -- reacts to us, and likes finger foods. I love it when he babbles and grins like he's telling us a big joke. Have the students guess how old he is."
John thought about it, but wasn't sure. My old teaching days kicked in, or perhaps my frustration at not teaching kicked in. "I think it'd be good for them to see it. Growth and development is so dry. Let them see Peter eating, cruising around, going up and down the stairs."
John started to nod. And I added, "We'll have the tape to keep -- you don't use the video camera nearly enough."
It was left unspoken that we couldn't have taken a similar recording of Ben.
Our date night turned into a running dialogue of the boys. But something inside me fluttered and twittered. Deep, deep down. What was going on with Ben? When I was pregnant, I'd worried constantly about having a healthy baby. The nurses would catch me crying in bed while I was hospitalized, wondering what was wrong. The IV in my arm, filled with a cream-colored fluid, ached from the awkward position, but I didn't care because it meant my baby was getting nutrition. And if my baby was being fed, then he'd be all right. Now, I wondered what had happened. What had gone wrong? Was Ben going to catch up? Or did it all mean something more serious? I literally shook my head to try to forget those thoughts.
Everything would be okay, I thought as I reached for my third biscuit.
Our home in the country had everything we wanted. A big, blue, salt-box shaped house, a creek, a pond, seventeen acres. Lots of space and lots of privacy. As Ben grew into his third year of life, I often thought of it as a sanctuary. A place where I could keep him safe, away from neighborhoods with kids who were quicker, sharper, and more able to tease him when he couldn't keep up. I envisioned losing him -- he wouldn't even be able to say his name. I bought a harness, a yellow strap with Velcro closures, so I wouldn't lose him when I shopped.
On an early summer day, my parents came for a visit. My father, an elderly Italian man, was standing across from me as I washed the dishes. My hand knocked the green pot scrubber over the counter, and it fell to the other side of the kitchen island. Ben stood next to my father, and I said to Ben, "Pick that up for me, honey."
Ben looked at me, puzzled. His eye contact was good. I sensed he knew I was speaking to him. "Pick it up." I leaned over and tried to point to it.
d
Ben faced the floor, but didn't move. Then he stared at me again with a blank expression on his face. "Oh, dee."
My father's eyes caught mine. I could see the sadness in them, the pity for me, and the worry for Ben.
"Pick it up!" My voice rose, and my hands fisted under the cold soapy water. I waited and Ben stood immobile. I turned to my father. "Why doesn't he pick it up?"
"He doesn't understand you," my father said evenly. "He just doesn't understand." He stared at Ben, and then, finally, his old eyes turned away.
Ben's face grew serious. He had this ability to sense the emotional wattage in the air. I swallowed, desperately not wanting to cry, and thanked my dad as he handed me the pot scrubber.
After the incident in front of my parents, I decided to try to engage Ben in more active play. I sat with him at the kitchen table, trying to entice him into coloring. He preferred his whale collection or his blankets around him. He loved to watch videos and would stare as the television screen played cartoons or Disney movies. But today, I was going to be a Good Mom. I was going to make this little guy of mine start to use his hands a bit more. After all, I had kept him home long enough. Preschool beckoned. He'd be ready to start this fall, in about five months. I just wasn't sure where.
I situated Ben at the table and held a crayon in my hand. I started to fill in the lines of the sailboat. "See Ben, fill in the bottom of the boat. I'm using a pretty shade of red."
I put a crayon into his hand. He ran the red crayon over the paper a couple of times, and let it fall out. I leaned over and tried it again. The crayon swirled around the paper and again, his hand dropped it. He murmured something unintelligible in his soft voice. Then he pointed with his finger dramatically, said, "Oh, wow!" and went into the living room.
The empty black-and-white pages of the coloring book closed spontaneously, and I put my head in my hands and started to sob. My fingers shook as I paged John.
When he answered, I yelled, "There's something wrong, John. You know there is. I know there is. He's not catching up. He's getting farther behind."
John's silence told me what I needed to know. Then he said, "I have faith in him."
"I'm getting him help. All right?"
"Of course."
"Have we waited too long?"
"No, I don't think so."
"I don't understand what's causing this."
"We'll figure it out."
"It's because I was so sick with him, isn't it?"
"No," he said.
"Was it the jaundice? We took him to the hospital every day. Why didn't they keep him?"
John's smooth, loving voice came across the line. "He'll be all right. He's got a lot going for him. He isn't autistic. Look at how much he loves us. And Peter. He's so gentle with Peter."
John had that way about him. My breathing got easier. I agreed with what he was saying. It was all true. John's strength reached out to me. Maybe it was because of all the pain and suffering he'd seen during his training at the children's hospital. I'm not sure. He didn't like to talk about it, but he'd told me about some of the dying children he'd tried to help. Whatever it was, he was able to ease my fears, provide the stability I needed. I trusted John.
ard
"Are you all right? I'm worried about you. I'll call you later today, okay?" he said.
"I'm calling someone today."
"Okay."
"It'll be all right?"
"Yes," he said.
I hung up the phone, got the directory, and started looking for help. I found the number of a speech and hearing clinic at a local university. A major university. The woman listened in a careful, neutral way with "uh huhs" in all the right places. I told her about my nonverbal little boy. And added how cute he was. How well-behaved. How he made me laugh. Despite the crack in my voice, thick with stress, she didn't veer from her professionalism or invite me in emotionally.
She explained that they had a preschool designed for kids who had language problems. There was a morning and afternoon preschool program two days a week with individual therapy offered during that time. The therapy was delivered by the students and overseen by a faculty member.
"Morning is so much better for him," I said. "He still naps." I wanted to add that he was still a baby in so many ways, but didn't. I tried to focus.
"I'm not sure what the schedule is. Why don't you call me back in about four weeks and, in the meantime, I'll put him on the waiting list. There are usually cancellations. But I'll be able to tell you more then."
She went on to tell me that the program started in the fall, a couple of weeks after the semester started. Then they'd be making the graduate student assignments. But first, the testing. We needed to bring him in for a complete language evaluation. I had no idea what that meant.
"Has he been tested before?"
"No," I said.
"He's how old?"
"He turned three in March, and this is May..."
"Has he been enrolled in any preschool program?"
"No, I've kept him home with me. I have another son, an infant, and we live out in the country."
A long pause.
I licked my lips, and waited, sure she was ready to say what a shitty mother I was, and ask me why I had waited so long to get my kid checked out. Come on, I almost said. Let me have it. Say it.
Instead, she said, "Okay. Let me give you the clinic secretary, and she'll give you a time."
After a thank-you and a transfer, I made an appointment and hung up the phone, feeling a sense of reserved hope. And fear.
Then I felt something soft against my lower arm and looked up to see Ben's hand resting upon it. He cocked his head and laid it against me, trying to tell me it would all be okay. I laced my fingers through his hair and said, "My perfect baby."
Copyright © 2002 by Karen J. Foli, Ph.D.
Recenzii
Library Journali Thoroughly engaging while providing a wealth of information.
Booklist [A] practical, heartwarming book.
Edward M. Hallowell, M.D. Read this book as you would a novel, a story about discovery and disappointment, understanding and misunderstanding, learning and not learning, hope and despair, and love in the face of difficult times, love that never, never quits.
A parent in Wisconsin Karen's story has meant the world to me.
A parent in Alaska This book has somehow made my family's journey valid. You, Karen, are a lighthouse in my ocean.
Jacqueline Egli, Executive Director PACE Brantley-Hall School, Longwood, Florida This book has become required reading for my staff and a recommended reading for parents. Dr. Foli gives us all a lesson in persistence, patience, hope, and the importance of teamwork.
Booklist [A] practical, heartwarming book.
Edward M. Hallowell, M.D. Read this book as you would a novel, a story about discovery and disappointment, understanding and misunderstanding, learning and not learning, hope and despair, and love in the face of difficult times, love that never, never quits.
A parent in Wisconsin Karen's story has meant the world to me.
A parent in Alaska This book has somehow made my family's journey valid. You, Karen, are a lighthouse in my ocean.
Jacqueline Egli, Executive Director PACE Brantley-Hall School, Longwood, Florida This book has become required reading for my staff and a recommended reading for parents. Dr. Foli gives us all a lesson in persistence, patience, hope, and the importance of teamwork.
Descriere
An impassioned and ultimately inspiring account of one woman's journey to help her son through auditory processing disorder, the aural equivalent to dyslexia that afflicts millions of children worldwide.