A mother reflects on lessons of her son’s autism: It’s all right to wait’
by Maria Eleanor E. Valeros
When my son Rain, at 15 months old, had a hard time walking beside me on the sidewalk, I knew there was something wrong. When he refused to point at flying objects zooming in the air and talking, the family was alarmed that his hearing may be impaired.
Young Rain on his first birthday with mother Maria Eleanor E. Valeros. He is 7 years old now. CONTRIBUTED PHOTO
I sought the help of a neuro-developmental pediatrician. She recommended the services of an occupational therapist and special education specialist/speech pathologist.
What was initially thought of as a speech delay triggered by a hearing disability turned out to be Sensory Integration Dysfunction (SID). That dysfunction is an impression of Autism Spectrum Disorder (ASD).
“There is something wrong with the way Rain processes things around him. This is a wiring problem in the brain,” the pedia-neurologist explained. “But don’t worry because occupational therapists can assist you with various therapy programs.”
People take in an extraordinary amount of sensory information everyday. We just don’t think twice about it.
Hard time
However, for kids like Rain, the simple task of walking from Colon Street to Santo Niño Basilica can be daunting or impossible.
Walking in a crowd of strangers, crossing a busy street with honking everywhere terrified him.
SID/ASD can impact every aspect of human development, including motor functions, speech and language, perception, adaptive and self-help skills, behavior, attention, visual motor and spatial development.
Like Rain, people with SID/ASD have a hard time making sense of space, time, and sounds, and situations, around them.
The disorder affects the vestibular system in the inner ear, which is very important because it affects a “function that is so widespread… It is the sense that tells us when we’re right side up or upside down. This is responsible for helping with balance and spatial orientation” according to Smileny.com, an online source that has helped me understand my son’s condition.
Piggyback rides
Autism also affects the proprioceptive system, which is a “network of sensors” throughout our muscles and joints that work together to create an internal body map.
” With this we can navigate a dark, unfamiliar environment, or reach and grab something behind us without looking.
When Rain was five years old, a friend of mine in special education advised stimulating his senses through frequent piggy-back rides, “horse ride” pretend play on the lap, throw-and-catch ball games, one-minute dancing with Rain standing on my feet.
This would have helped more if he had started at 3 years old. At a developmental center in Lahug, he first resisted jumping on the trampoline and walking up the stairs.
Last year at age 6, he improved his sense of focus and eye contact.
Kids with special needs need a dynamic, child-directed treatment approach. Each child is different. Each case is special.
Not all parents can afford to send their child to a center fully equipped with a sensory gym.
While I understand what he’s going through, it’s difficult to explain this to everyone I meet, especially those who see Rain throw fits. I melt every time strangers gives a puzzled stare at me.
While I was able to accept my situation with the composure of an Olympian because I’ve been a mainstream media writer for the past 16 years, I could not hold back from weeping and blaming myself for “wanting” a child.
In my early 30s, I murmured the prayer of biblical Sarai or Sarah, who longed to have a child even though she was in her 80s.
Like her, I implored the Awesome God to “never let my womb die so soon.” I relied on Psalm 127:3’s promise that “children are a gift of the Lord,” and that the “fruit of the womb is a reward.”
When the “gift” came, I went through episodes of frustration and depression in that long haul to accept reality.
I considered quitting my job to take care of Rain. My mother was old.
Mount Everest
When she got ill, presumably triggered by fatigue or stress, I had to accept the blame for leaving Rain in her care for 12 hours a day while I was on field.
I took a leave of absence from work to look for professional help from a list of 11 so-called help centers provided by the neuro-pedia specialist.
Four responded to my SMS inquiries. Only one gave me information about what I needed at a time I was navigating my own mountain.
Since 2002, I’ve been a serious backpacker. Trekking rough terrain was easy.
I love the great outdoors – sky and rain, grass and river, fog and waterfalls. I’m mad about forests. But when Rain’s concerns came up, I knew he would be my Mount Everest.
Major challenge
A day’s salary was an hour’s worth of Rain’s therapy sessions. I was ill-equipped for our journey.
Rain’s father, an aeronautics sciences instructor, had his own struggle with a difficult employer. We were both groping for answers for Rain’s special needs in a financially challenged state.
Finances is a major challenge for a parent. I could ignore people who poked fun at my son’s unusual ways.
I could stop blaming heaven for this predicament. But I had to raise funds. An OT evaluation and assessment costs around P2,000.
A therapy session is around P500. Neuro-pedia services vary from P1,500 to P2,000.
An early intervention program costs P9,000 to P16,000 a month. It’s a financial drain. Parents living below the poverty line need a help line or a support group.
There’s no easy way through it. You have to gobble up your ego and seek out benefactors. Help from government is limited. Can I say “whoa!” a la Miriam?
When I knocked on the door of the developmental center where Rain is now, I was in a very low emotional state.
I come from midwest Cebu province. Getting to the center required funds and courage.
“Pang-richie rich man gyud ni nga disorder Lord uy, Giapil pa man ko nimo nga kabalo baya ka where I come from,” I complained. (This condition is for the rich, Lord. You included me even though you know where I come from.)
But Pope Francis is right about allowing God to surprise you. I found answers.
Finest moment
Not only did the center provide a “win-win solution,” it offered an option to settle bills in the most friendly manner.
At age 7, Rain is able to wait. “It’s all right to wait, Rain,” the teachers tell him.
That has become my mantra: It’s all right to wait. Maybe, I was accustomed to life in the fast lane that I got “emotionally bedridden” with Rain’s case.
I had forgotten the lessons of struggling through mountain trails to reach that sweeping view on a summit, to find nature at its finest moment.
New normal
Rain’s special needs have taught me to take a pause. It changed my entire view of child-rearing.
I can’t rely on other people to take care of him. I have to be completely involved. I have to choose between child-rearing and a media career. I have chosen Rain.
Yes, it’s a difficult situation but I’ve learned to face my reality, my new normal: I have to wait. It is okay to wait.
Now when people give me and my son annoying stares, I have a good line to throw back: Autism is not the tragedy. Ignorance is.