Leah BensonThe beginning: DIagnosis Autism (LINK)
June 18th 2008 06:43
As with any great story, this one has a beginning. It begins with the birth of my first and only son, Max. Max came into the world on June 1st, 2000, exactly 5 weeks before his scheduled date of birth. He weighed a slight five pounds and within minutes of his first cries, was diagnosed with multiple birth defects. "He will need surgery to repair these problems," the midwife announced matter-of-factly, "but don't worry about that now."
Don't worry? I thought, looking over at the baby that had just tore through my body. "Ten fingers," I thought to myself. "At least he has ten fingers".
Worry would grow like cancer over those first months. Every diaper brought bloody stools as Max’s severe food allergies to everything he ate (breast milk, soy, elemental formulas, etc.) caused severe ulcerative colitis and began eating away Max's tiny intestines. At five-weeks-old, Max was re-hospitalized for failure to thrive and severe anemia. Max spent more time at Children's Hospital and Mayo Clinic than in his own house. He had surgery to repair his birth defects, including hypospadias, multiple eye problems, and an intestinal malrotation. The latter led to a year's worth of projectile vomiting, staining our furniture, bedding, clothes, and so forth, in fact, our carpet-- a brownish tan burber-- still resembles a spotted twister board!
At the same time, Max began having seizures and was eventually diagnosed with Epilepsy. We saw a geneticist who remarked that Max had frontal embossing, or an abnormality of the shape of his skull, low setting eyes, and webbed toes. Combined with his other birth defects and severe food allergies, the doctor felt confident that he would someday fit a particular “syndrome,” but at this time, that syndrome doesn’t exist. Both my husband and I demonstrated no tendency for genetic problems, but my husband had a vasectomy just to be certain. it was a rough twelve months, to say the least. We were first time parents who were struggling financially, emotionally and physically and the toll of sleep-deprivation and constant fear began aggravating an already strained marriage.
Somewhere near his first birthday, Max stopped using his eyes to search for people, sounds, and lights. "But he doesn’t seem to be deaf," the pediatrician concluded. We hit pans behind him just to make sure. Sometimes he would startle and start crying, other times he sat motionless, completely unaware of the banging behind him. He was too intent on the flapping fingers flashing past his eyes: over and over and over (we weren't yet familiar with stimming).
“Preemies always lag behind their peers,” people tried to reassure us. But there was something building in our hearts, some ever-present anxiety. Max couldn't recognize us, his parents. We took him to the Mall and put him five feet from us, but within seconds he was looking right past us, completely unaware of any familiarity. “Max… Max…” we called out to him but he wouldn’t turn his head. I developed a roll of film from his first birthday and caught myself crying at the familiar look on his face. As you can see in the following picture, Max's eyes never seemed to find the camera, instead focusing somewhere above our heads.
We scheduled another appointment, this time with a neurologist. “His development is definitely behind,” he concluded, “but he has spent a lot of time hospitalized, without normal childhood experiences, and he might need more time to catch up.” Catch up? I found myself questioning the old exisential problem of relativity. Catch up to whom?
But irregardless, we followed the neurologist's recommendation and got out son's name on the waiting list to be assessed for developmental problems. In the interim, he steered us towards Childhood Early Intervention through our school district and within weeks, Max was receiving speech and occupational therapy at our home two times a week.
At the same time we we’re getting Max on the waiting list; I went online and started researching developmental delays. It was late at night; I was alone in the computer room. I followed a link to a page where the word autism stared back at me. I remember the women I knew in graduate school, the one’s who did their internship at a school for autistic toddlers. My shoulders rolled forward, the tension building in the muscles running up my neck. My eyes followed the neon bullet points, each point detailing another “symptom,” each “symptom” perfectly describing my son. Without thinking, I printed out the list and carried it into the other room, waking my husband from a rare-moment’s sleep. “Max has autism,” I blurted out to him. And that was all it took: the hereto unspeakable truth had somehow snuck through a open window, and now the last shreds of our denial were blowing away.
Five months later, after a full day of grueling diagnostic testing, a team of developmental psychologists sat down with my husband and myself and said those same words: “your son has severe autism and mental retardation, and at this age he clearly fits the criteria for ADHD.” Mental retardation? Our son is retarded, I thought to myself, and just as quickly felt ashamed for my reaction to those words. “We have estimated his IQ at 54, but the autism can make it very difficult to accurately assess intelligent quotients.” I remember very little after that pronouncement.
Images of brains, neurotransmitters, and synapses flashed before me. All these things I had once studied at the University were now laughing at me. "I would NEVER work with those kids," I had said in response to a story about a gal who was severely bitten by one of her autistic students. At the time, I couldn't imagine anything worse. But these are the things that will be addressed in future blogs. Stories about me, my husband, about how we both succeeded and failed in the early years following Max's diagnosis. I will offer pratical information, reflect on current debates around the issue of what causes Autism, and more than anything else, try and use my experiences to teach, advocate, reach out to, and benefit anyone currently swimming (or drowning) in the powerful continuum called Autistic Spectrum Disorders. WELCOME TO ALL-THINGS-AUTISM!
1. [B]Open Window, Collioure by Henri Matisse, 1905. Oil on canvas, 55.25 x 46.04 cm, 21 3/4 x 18 1/8 in. Collection of Mr. and Mrs. John Hay Whitney, 1998.74.7.
2. Originally this was taken from Major Brain Structures Implicated in Autism, but that resource no longer exists. An inferior copy of it, in GIF form, is in Major Brain Structures Implicated in Autism, an image that appears in: Strock, M (2007). "Autism spectrum disorders (pervasive developmental disorders)". National Institute of Mental Health. Retrieved on 2007-10-05.
This work is in the public domain in the United States because it is a work of the United States Federal Government under the terms of Title 17, Chapter 1, Section 105 of the US Code. See Copyright.
Don't worry? I thought, looking over at the baby that had just tore through my body. "Ten fingers," I thought to myself. "At least he has ten fingers".
Worry would grow like cancer over those first months. Every diaper brought bloody stools as Max’s severe food allergies to everything he ate (breast milk, soy, elemental formulas, etc.) caused severe ulcerative colitis and began eating away Max's tiny intestines. At five-weeks-old, Max was re-hospitalized for failure to thrive and severe anemia. Max spent more time at Children's Hospital and Mayo Clinic than in his own house. He had surgery to repair his birth defects, including hypospadias, multiple eye problems, and an intestinal malrotation. The latter led to a year's worth of projectile vomiting, staining our furniture, bedding, clothes, and so forth, in fact, our carpet-- a brownish tan burber-- still resembles a spotted twister board!
“Preemies always lag behind their peers,” people tried to reassure us. But there was something building in our hearts, some ever-present anxiety. Max couldn't recognize us, his parents. We took him to the Mall and put him five feet from us, but within seconds he was looking right past us, completely unaware of any familiarity. “Max… Max…” we called out to him but he wouldn’t turn his head. I developed a roll of film from his first birthday and caught myself crying at the familiar look on his face. As you can see in the following picture, Max's eyes never seemed to find the camera, instead focusing somewhere above our heads.
We scheduled another appointment, this time with a neurologist. “His development is definitely behind,” he concluded, “but he has spent a lot of time hospitalized, without normal childhood experiences, and he might need more time to catch up.” Catch up? I found myself questioning the old exisential problem of relativity. Catch up to whom?
But irregardless, we followed the neurologist's recommendation and got out son's name on the waiting list to be assessed for developmental problems. In the interim, he steered us towards Childhood Early Intervention through our school district and within weeks, Max was receiving speech and occupational therapy at our home two times a week.
One day we covered the kitchen floor
with cheerios for sensory therapy.
other days we used noodles, flour, or play-do!
with cheerios for sensory therapy.
other days we used noodles, flour, or play-do!
At the same time we we’re getting Max on the waiting list; I went online and started researching developmental delays. It was late at night; I was alone in the computer room. I followed a link to a page where the word autism stared back at me. I remember the women I knew in graduate school, the one’s who did their internship at a school for autistic toddlers. My shoulders rolled forward, the tension building in the muscles running up my neck. My eyes followed the neon bullet points, each point detailing another “symptom,” each “symptom” perfectly describing my son. Without thinking, I printed out the list and carried it into the other room, waking my husband from a rare-moment’s sleep. “Max has autism,” I blurted out to him. And that was all it took: the hereto unspeakable truth had somehow snuck through a open window, and now the last shreds of our denial were blowing away.
matisse
Five months later, after a full day of grueling diagnostic testing, a team of developmental psychologists sat down with my husband and myself and said those same words: “your son has severe autism and mental retardation, and at this age he clearly fits the criteria for ADHD.” Mental retardation? Our son is retarded, I thought to myself, and just as quickly felt ashamed for my reaction to those words. “We have estimated his IQ at 54, but the autism can make it very difficult to accurately assess intelligent quotients.” I remember very little after that pronouncement.
1. [B]Open Window, Collioure by Henri Matisse, 1905. Oil on canvas, 55.25 x 46.04 cm, 21 3/4 x 18 1/8 in. Collection of Mr. and Mrs. John Hay Whitney, 1998.74.7.
2. Originally this was taken from Major Brain Structures Implicated in Autism, but that resource no longer exists. An inferior copy of it, in GIF form, is in Major Brain Structures Implicated in Autism, an image that appears in: Strock, M (2007). "Autism spectrum disorders (pervasive developmental disorders)". National Institute of Mental Health. Retrieved on 2007-10-05.
This work is in the public domain in the United States because it is a work of the United States Federal Government under the terms of Title 17, Chapter 1, Section 105 of the US Code. See Copyright.
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