Facing the Moment of Truth
A Mother Finds Painful Answer to Question: ‘Is It Autism?'
A Mother Finds Painful Answer to Question: ‘Is It Autism?'
by Tamar Bihari
Editor's note: The opinions expressed herein are those of the author exclusively.
Editor's note: The opinions expressed herein are those of the author exclusively.
When my son Damian was two-and-a-half-years old, my husband and I enrolled him in a sweet little preschool about ten blocks away from home. It was the best decision we ever made. Not because Damian did well there, but because he didn't.
During the first week of January 2001, as I sat on the floor of the classroom with a group of mothers while our children got acclimated, I got a chance to compare and contrast: Damian versus every other child in the room. A boy brought me a toy: "It's a di-saur." Two other boys crashed their trucks into each other, exclaiming with glee. A girl toddled up and asked what was in my backpack.
Where was my son? He lay on the rug, waving a toy car in the air, watching it out of the corner of his eye as he ignored the children around him.
At circle time, while the kids clamored to talk to the teacher and her fuzzy puppets, Damian stood at the other end of the room by the fish tank, watching silently. I hurt for him. He seemed so isolated, so fragile. I wanted to hug him tight and never let him go.
Until I sat in that classroom, surrounded by the warm chatter of young children, I hadn't realized how much my son was missing out on the spontaneous delight of childhood. How much we both were.
"You should take him to a pediatrician, get him checked out," another mother told me. "He's either a genius or there's something wrong."
After a week in the classroom, I was ready to hear her sharp but kind words. Ready to begin the journey.
Before Diagnosis, In Denial
In my head now, I divide my son's life into the time Before Diagnosis and the time After Diagnosis. He hadn't changed from one day to the next, but I had. If you step outside on a sunny day, the light stabs your eyes, turning the world white and strange. My awakening felt like that, blinking in dismay after so long in the dark.
I'd become accustomed to attributing his odd behavior to the idiosyncrasies of a moody toddler.
When he sobbed in the park swing, I would think, "Oh, he's sensitive," and take him out with a reassuring hug. When he lay prostrate on the filthy floor in the toy store aisle, I would think, "Oh, he's tired," and take him home. When he babbled lines from Goodnight Moon but never said "I love you, Mommy" or "I want juice," I quoted "Good night mouse, good night house," right back at him and learned to read clues about what he wanted from the tilt of his head or the tenor of his wails. When another boy ripped a toy out of his hand at the playground, I watched as Damian turned away, avoiding confrontation. I labeled him a junior pacifist and was perversely pleased.
It was harder to justify his terror at play group, the way he'd recoil from a room filled with happy toddlers, but there too, I called him a loner, a leader, an iconoclast.
If Damian had been doubled over in pain from recurrent headaches, if he had spiked a fever of 106 degrees or fallen to the floor in an epileptic fit, I would have rushed him to the doctor in adrenaline-boosted maternal overdrive. Why didn't his abnormal behavior give me the same parental jitters? Why did I work so hard to rationalize every oddity?
Maybe it's because neurological issues can feel like a curse rather than an ailment. There's no magic pill, no surgery that can cure the problem; the doctor won't hand you a prescription to "take two daily and call me in ten days." Coping with a diagnosis of autism is far more complex. Back then, it felt like a great yawning vacuum, a terrifying unknown.
Taking the First Step
I called the pediatrician and asked for a speech consult. I thought, "Well, if he can't tell us what he wants and thinks and feels, that could make him shy, make him frustrated, make him odd." That's as far as my heart allowed me to go with the thought.
When the doctor walked into the examining room, Damian was playing with a bead rollercoaster toy, running the colorful beads along the wires. He didn't look up.
The doctor smiled, a winning, beautiful smile, and said, "Hi, Damian."
No response.
The doctor looked at us with concern and compassion. "I thought you said speech consult, not behavior consult."
That conversation was the first time I heard the word autism in connection with my son. But I didn't hear it, not really. I heard, "Bright children sometimes talk late," I heard, "Developmental expressive aphasia," I heard, "Possible hearing problem."
Autism? Isn't that label reserved for children who can't laugh, can't respond, can't feel? That wasn't my son. Damian would sit on my lap for hugs, giggle when we played tickle games, cry when I left the room. Autistic? He couldn't be.
That night, after Damian was asleep, his breathing so soft and even, the ambient light limning the curve of his round baby cheeks and his luxurious long lashes, my husband Dan and I got on our computers and began typing "speech delay" and "book quoting" and "fear of socialization" into all the internet search engines. We paged through descriptions of apraxia (doesn't sound like him), selective mutism (not really that either), and, yes, autism (can it be?). I took an online autism questionnaire. The answer came back: See a doctor. There is cause for concern.
So There It Is
In the dark of that night and the next days, I began to understand. My eyes began adjusting to the truth. By the time I took Damian to see the speech pathologist who would teach him to talk, I already knew the answer. As I watched him running cars back and forth on the floor, barely responding to her playful initiation, I knew she saw it too. But I had to ask.
"Is it autism?"
Her answer: "I'm not qualified to give an official diagnosis, but based on what I'm seeing, yes, it looks like it could well be." So careful, just as she should be, not stepping outside her clinical boundaries. But it was exactly the confirmation I needed.
The turning point is not the diagnosis itself, I think. It's the willingness to see. To understand that your child has this condition, that the way he or she is acting is not willful, is not unique, and is not something he or she will grow past, not without help.
Back then, it felt like I was stepping into an alternate universe, one where light was dark, good was bad and a child was broken inside, where someone said "How are you?" and I burst into tears.
Looking back, I see it differently. With knowledge comes power. Once I knew Damian's diagnosis, once I understood what was wrong, I could work with him, learn to engage him and bring him step by step into the world. And so I became a firsthand witness to the most profound transformation I will ever experience: ultimately, my son becoming himself, a chatty, sassy, imaginative eight-year-old boy.
If my husband and I hadn't taken that astonishingly painful first step from denial into realization, Damian would never have had the chance to blossom.
Tamar Bihari is a freelance writer living in New Jersey with her husband and son. Her website, Hidden Laughter, chronicles her son's journey through autism.
Where was my son? He lay on the rug, waving a toy car in the air, watching it out of the corner of his eye as he ignored the children around him.
At circle time, while the kids clamored to talk to the teacher and her fuzzy puppets, Damian stood at the other end of the room by the fish tank, watching silently. I hurt for him. He seemed so isolated, so fragile. I wanted to hug him tight and never let him go.
Until I sat in that classroom, surrounded by the warm chatter of young children, I hadn't realized how much my son was missing out on the spontaneous delight of childhood. How much we both were.
"You should take him to a pediatrician, get him checked out," another mother told me. "He's either a genius or there's something wrong."
After a week in the classroom, I was ready to hear her sharp but kind words. Ready to begin the journey.
Before Diagnosis, In Denial
In my head now, I divide my son's life into the time Before Diagnosis and the time After Diagnosis. He hadn't changed from one day to the next, but I had. If you step outside on a sunny day, the light stabs your eyes, turning the world white and strange. My awakening felt like that, blinking in dismay after so long in the dark.
I'd become accustomed to attributing his odd behavior to the idiosyncrasies of a moody toddler.
When he sobbed in the park swing, I would think, "Oh, he's sensitive," and take him out with a reassuring hug. When he lay prostrate on the filthy floor in the toy store aisle, I would think, "Oh, he's tired," and take him home. When he babbled lines from Goodnight Moon but never said "I love you, Mommy" or "I want juice," I quoted "Good night mouse, good night house," right back at him and learned to read clues about what he wanted from the tilt of his head or the tenor of his wails. When another boy ripped a toy out of his hand at the playground, I watched as Damian turned away, avoiding confrontation. I labeled him a junior pacifist and was perversely pleased.
It was harder to justify his terror at play group, the way he'd recoil from a room filled with happy toddlers, but there too, I called him a loner, a leader, an iconoclast.
If Damian had been doubled over in pain from recurrent headaches, if he had spiked a fever of 106 degrees or fallen to the floor in an epileptic fit, I would have rushed him to the doctor in adrenaline-boosted maternal overdrive. Why didn't his abnormal behavior give me the same parental jitters? Why did I work so hard to rationalize every oddity?
Maybe it's because neurological issues can feel like a curse rather than an ailment. There's no magic pill, no surgery that can cure the problem; the doctor won't hand you a prescription to "take two daily and call me in ten days." Coping with a diagnosis of autism is far more complex. Back then, it felt like a great yawning vacuum, a terrifying unknown.
Taking the First Step
I called the pediatrician and asked for a speech consult. I thought, "Well, if he can't tell us what he wants and thinks and feels, that could make him shy, make him frustrated, make him odd." That's as far as my heart allowed me to go with the thought.
When the doctor walked into the examining room, Damian was playing with a bead rollercoaster toy, running the colorful beads along the wires. He didn't look up.
The doctor smiled, a winning, beautiful smile, and said, "Hi, Damian."
No response.
The doctor looked at us with concern and compassion. "I thought you said speech consult, not behavior consult."
That conversation was the first time I heard the word autism in connection with my son. But I didn't hear it, not really. I heard, "Bright children sometimes talk late," I heard, "Developmental expressive aphasia," I heard, "Possible hearing problem."
Autism? Isn't that label reserved for children who can't laugh, can't respond, can't feel? That wasn't my son. Damian would sit on my lap for hugs, giggle when we played tickle games, cry when I left the room. Autistic? He couldn't be.
That night, after Damian was asleep, his breathing so soft and even, the ambient light limning the curve of his round baby cheeks and his luxurious long lashes, my husband Dan and I got on our computers and began typing "speech delay" and "book quoting" and "fear of socialization" into all the internet search engines. We paged through descriptions of apraxia (doesn't sound like him), selective mutism (not really that either), and, yes, autism (can it be?). I took an online autism questionnaire. The answer came back: See a doctor. There is cause for concern.
So There It Is
In the dark of that night and the next days, I began to understand. My eyes began adjusting to the truth. By the time I took Damian to see the speech pathologist who would teach him to talk, I already knew the answer. As I watched him running cars back and forth on the floor, barely responding to her playful initiation, I knew she saw it too. But I had to ask.
"Is it autism?"
Her answer: "I'm not qualified to give an official diagnosis, but based on what I'm seeing, yes, it looks like it could well be." So careful, just as she should be, not stepping outside her clinical boundaries. But it was exactly the confirmation I needed.
The turning point is not the diagnosis itself, I think. It's the willingness to see. To understand that your child has this condition, that the way he or she is acting is not willful, is not unique, and is not something he or she will grow past, not without help.
Back then, it felt like I was stepping into an alternate universe, one where light was dark, good was bad and a child was broken inside, where someone said "How are you?" and I burst into tears.
Looking back, I see it differently. With knowledge comes power. Once I knew Damian's diagnosis, once I understood what was wrong, I could work with him, learn to engage him and bring him step by step into the world. And so I became a firsthand witness to the most profound transformation I will ever experience: ultimately, my son becoming himself, a chatty, sassy, imaginative eight-year-old boy.
If my husband and I hadn't taken that astonishingly painful first step from denial into realization, Damian would never have had the chance to blossom.
Tamar Bihari is a freelance writer living in New Jersey with her husband and son. Her website, Hidden Laughter, chronicles her son's journey through autism.
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