Water, water, everywhere and not a drop to drink”
– Samuel Taylor Coleridge, Rime of The Ancient Mariner
There is so much about autism, yet there is so little to help parents who are faced with the daunting task of raising their autistic children.
It is often an overwhelming, life long, not to mention expensive, endeavor to pin point solutions because autism is not “one” illness. It is neurological, physiological, genetic, behavioral, environmental, dietary, even prenatal. Every child is different, and even doctors call it an “inexact science”. The medical community has few answers that satisfy as it treats individual symptoms, often using a trial and error approach.
People understand cancer, diabetes and the community rallies around the family. Autistic children on the other hand, may be misunderstood, get labelled by peers, friends, teachers, and have few friends. It’s not unusual to be spurned by your own family because autistic kids are not the most easy or fun to live with. It is lonely for both the children – and their parents.
I’ve always been a dreamer and an idealist. When I became a mom, I thought if I smothered my son with love, and gave him every opportunity, he would be a responsible, caring, successful young man. An athlete, reader, musician, maybe groom a new Peter Jennings. And of course he would go to an ivy-league school and change the world. Nobody told me that the law of cause and effect does not apply to raising children.
Today, my goals are less lofty. I am thankful for each day when he’s calm and happy, shows some independence and makes good choices.
You see, my son “Jack” has been diagnosed with PDD – Pervasive Developmental Disorder – a term coined by therapists and the medical community for any and all problems associated with autism that can’t be put into a box. He’s just turned twelve, but has the emotional maturity of maybe an eight year old, is impulsive, has deficits in his speech, suffers from sensory disorders, anxiety, and has learning and attention issues. It took us almost six years to identify each of his problems, label them and try to treat them.
Our ordered comfortable world has turned from carefree and predictable to spinning chaos, our resources and emotions depleted. Unlike other illnesses, autism can’t be treated with a drug, and there are no X-rays, blood test or MRI categorize it. It’s this inconclusive, protracted, maybe life-time problem. I’ve often wondered how other parents handle the challenges. In a country where there is little extended family support, where you’re dealing with an illness with more unknowns than answers, where you try different methods and treatment hoping to find one/ a couple that works, it’s often a very lonely, expensive and terrifying journey.
You are Not Alone
Yet, through the years, we’ve learnt so much, mostly through trial and error, from his school teachers, other moms, research etc. I am not an expert, nor a medical professional, nor am I trained in child behavior, just a mom whose son has gone through many different therapists and therapies, treatments, and tears. There will be blogs from moms, teachers, experts, advocates and others with the same passion sharing their experiences.
We’ve set up this blog as a one stop destination so that parents, family and moms can “gather” with other moms to learn, share, celebrate and cry. It might simplify your search for answers, but if all you get is an encouragement, hope or a tip to make today an easier day, then, we’d have achieved our objective. We hope this can be your virtual community cos it takes a village.
To separate the facts from the hype created by advertising, PR and lobby-biased opinions on treatments and interventions, we plan to feature first-person accounts of what has worked and what hasn’t. Because this website is set up to be a virtual community, there would be an open, honest forum to pose questions and answers so moms can make informed decisions. You’re invited to become a part of this community! Share what’s worked for you and what hasn’t. For example, we’ve tried extensive neurofeedback treatments, which makes me an expert parent on the subject, so I posted a series of blogs on the subject : start with Neurofeedback – Myth or Medicine? … Or take a look at what’s fresh on the blog and please leave a comment to start the dialogue.
I probably have the faith of a mustard seed, enough to let me make it through the bad days and the setbacks. Some days when it seems hopeless and my best efforts futile, it’s the grace of God that props me up. I have not had big revelations on the “whys” which I’m asking less and less, and focusing on the “hows” and often wondering, “when”. Looking Up would have messages from people more qualified than I to help us maybe make sense of it all, or an encouragement that amidst the storm, we find some solace. Shalom!
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