If anyone has any ideas that may help, I would appriciate it!
Archive: June 2006
If anyone has any ideas that may help, I would appriciate it!
"One sees clearly only with the heart. Anything essential is invisible to the eyes." - from The Little Prince by Antoine de Saint-Exupery
HAVING a son with autism comes with as much difficulties and continuing challenges as there are quite a number of blessings. Three years ago, after my son was officially diagnosed with the autism spectrum disorder (ASD), I must have misunderstood my readings about the said disability and the expert advices I received saying that "autism (was going to be) a lifetime condition".
My son, Jay who was 3 years old at that time, did not speak any comprehensible word -- not even "mama" -- except some barbaric syllables. He would run around the house aimlessly, stare at a Sesame Street box cover, roll himself on the sand, cry endlessly with almost impossible remedies, giggle without any cause, urinate just about anywhere, would not excrete in the toilet bowl and refuse to sleep until the next early morning. He would evade looking at me or anyone else when spoken to and this made teaching him any skill simply difficult. He stopped taking any solid meal except milk from a feeding bottle. And then I pictured Jay behaving the same way, this time at the age of 40... I felt my heart getting crumpled.
On the first two years of his therapies, I would cling to every little improvement that Jay would show. Deep inside my heart, however, I knew that as a human being, he deserved to be in a better condition at the very least. I had this aching desire in my heart that one day, Jay would suddenly snap out of the autism syndrome... Impossible?
At the very moment that I'm writing this article, Jay has just finished eating his dinner -- rice and crispy fried chicken. He has set-up his eating utensils and fed himself just like any independent kids of his age -- he is now six and a half years old. He can also bathe and get dressed by himself, among other life skills. He is already potty trained. Some of the words that he can say are "water", "soap", "apple", "banana", "open", "dog", etcetera. Just last week, he started to read whole words and will be getting into an SRA (Science Research Associates, Inc.) reading program. He doesn't jump in place nor run without direction anymore. I haven't noted any remarkable giggling by him for quite some time now. But these are only some of the positive indications that our odyssey towards recovery has just begun. We have a long way to go.
Our battle against autism seemed tedious. The way we started with only a search for some cure or effective treatments in mind turned out to be a journey of forming bonds with people that we hardly even knew. There are quite a number of persons who are more than willing to help Jay overcome his disabilities and make him whole again, as a person. Ms. UL, our mentor and the principal of Sta. Isabel Learning Center has repeatedly emphasized that we only need faith in God and in Jay's capacity. "In God's time, ten years could mean one day for Him," I would remember her say. Patience in such a case would mean to keep on going despite the seemingly unremarkable improvements. Putting it this way, however, would only simplify her impact on our lives. I think that the best thing that Ms. UL has ever given us is self-empowerment.
Continuous searching, researching, and keeping an open mind has also been a virtue that I had to learn. Once, I chanced upon a website that said, "Autism can be cured". I almost did not access the site because I have always been led to believe that this disease or disability was permanent and one can only develop some skills that a child needed in order to go through adult life with a certain degree of independence. But then again, a parent's gut feeling and faith in his child were what propelled Dr. Bernard Rimland and a group of strong-willed parents and professionals to form what is now known as the Autism Research Institute whose main undertakings are to find research-based medical treatments for curing autism. There are now an increasing number of children, mostly in the United States and some parts of Asia, who have recovered and do not even exhibit a trace of the autistic behaviors. Had I closed my mind, and threw off the descriptive line as one of those phony advertising come-ons, Jay would have never gotten into the first level of the series of the biomedical approach.
I guess that one of the greatest blessings that Jay has also given us is the miracle of forming friendships with people that we haven't met physically. And yet, we were able to know each other through the kindness and generosity that has always been within each one of us, and the goodness of the human heart. I have recently found and registered in an online discussion group over autismpinoy.com. It is Philippine-based and most of the parents in this group are into the biomedical approach and it is simply amazing how each one of us can express support, advices, and comfort to each other amidst, in the face of, and even beyond our very own struggles. And to think that most of us have not even seen what the other looks like! We only knew each other by heart. The website host, Awit Dalusong, is one incredible woman who put up the said website for the main purpose of helping others who is undergoing the same trials as she does.
There are also people who are simply benevolent and sympathetic to our cause even if they are not directly involved. Our big-hearted editor-in-chief Kathy Cinco is only one of them. I cannot thank her enough for patiently publishing my articles on autism. What is even extraordinary is how she can feel so happy for every little triumph that I would relate to her about my son, Jay, whom she barely knows. I guess that a good heart basically is just too big for any human triumph.
With this article, I would like to encourage every mother, father, sister, brother, friend or neighbor to advocate for our special children. Given the right opportunity, each one of us, including special persons, can become positive contributors in our society. For those who want to share their stories, worries, or concerns on autism, please don't hesitate to email me at email@example.com or you may access www.autismpinoy.com for a comprehensive discussion of autism treatments.
~By Jeanne Tan Te
"The eagle, who believed he was a chicken, wasn't. However, until he discovered what he was, he was limited to live as one." -Unknown
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