Growing Up With Autism: Journeys of Love, Devotion, And Hope: Mothers and Fathers Speak
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Growing Up With Autism - Lirio Sobrevinas-Covey
Prophet.
LIVING WITH AUTISM
by Lirio Sobreviñas-Covey, Ph.D.
Reprinted from the Sunday Lifestyle Section, Philippine Daily Inquirer, June 25, 2011
When my firstborn was not quite four months old, his first nanny had delighted me with the comment, You have a precocious son.
And so it was that Billy became a source of family pride with his growing social, physical, and mental prowess.
So imagine what a shocking blow it was when, several years later, Dr. Isabelle Rapin, a noted neurologist in New York, gently told me that our second son, Mikey, then 3, had what she termed a brain disorder
and would likely need supervision throughout his life. This very general diagnosis followed an earlier labeling of my child that should have been unnerving, but was not at the time. Looking back, I was probably refusing to acknowledge the observation of family and friends, and the doctors’ eventual findings.
First, it was a baby-sitter’s comment when Mikey was 18 months old. He fusses too much,
she complained. Then a cousin, who was a nurse and a mother of two, advised me: You’ll need to always watch over Mikey.
And then Mikey’s second baby-sitter, who cared for him all day while I was at work, told me to take him to a neurologist because she was noticing some unusual signs.
Shortly after that, at his third annual check-up, I asked his pediatrician why Mikey was speaking only single, monosyllabic words, and not responding readily when I called him by name. Dr. Brittis referred me to the Burke Rehabilitation Center in White Plains for a hearing evaluation. His hearing was fine, yet they sent me home with the pamphlet titled Rights of Handicapped Individuals.
I mentally rejected the pamphlet because I did not think the handicapped
label applied. He was not crippled or blind. They gave me a further referral to an early child intervention psychiatric clinic, which made me feel better. Psychiatry? We can handle this; at least, it is not physical.
But it was not to be. So at the age of 3, Mikey began to see a psychiatrist and a psychiatric social worker regularly, to help him develop his speech. Not long after beginning the sessions, however, he began to experience sudden head lurches along with a fall. He would drop to the ground, his head bumping into objects that were in the way. If the object was sharp or hard, it would cut his facial skin. This happened several times. A cut on his nose when his face dived into a glass bowl; a cut on his forehead when his head jerked against the mouth of a metal coffee pot. Another time, his head hit the edge of a wicker table. Each of those times was followed by a trip to the emergency room for stitches to close the head wounds. Each of those times, he struggled on the surgery table. Each of those times, I felt numb.
Mikey’s therapist consulted her former mentor, the noted Oliver Sacks, for a referral. He sent us to Dr. Isabelle Rapin. After an hour and a half of consultation, a normal awake EEG, and an abnormal asleep EEG, she gave us a tentative diagnosis: a brain disorder. It was 1982. At that time, even among experts, little was known about Mikey’s condition.
The therapy sessions continued, the goal being to develop my son’s social skills, to encourage more speech. Several months later, it was time to start nursery school. We were advised to turn to the county’s social services for disabled children, and from here we were directed to special education schools.
Four years and four special schools later, Mikey, at the age of 9, was finally in a school that seemed to match his unusual behavior and limited cognitive skills —or, one could say, impairment. It was a program for kids with autistic