Winn-ER son!!!

In HIS EYES

He screamed with all his might as he heralded his arrival into this world. The man standing beside the doctor was speechless as he stared at his newborn son! At that very moment, the presence of this life form in front of him has made him a father once again. A father to a second son!

The nurse practitioner checked him out and after counting his fingers and toes, she declared with much delight, “He’s perfect!”

He came with a full set of deep dark brown hair crowning the most perfect baby head, framing the most perfect baby face.  He came in the most perfect way, perhaps, the only thing he needed at the time of his arrival, was a perfect haircut!

He was named after one of the greatest Bolivian Soccer players, a superstar athlete, his parents never even knew existed until a couple of minutes before his journey to the outer world commenced. Until the very hour he was to be born, his parents were still undecided on what to name him. They had known that “it” was going to be a boy. The World Cup of 1994 was on and they watched as this Bolivian wonderboy of soccer scored a goal, his name flashed all over the Hospital TV monitor. Erwin “Plantini” Sanchez, his name was, that world-class soccer player, so Erwin the baby’s name was to be.

His mother had always wanted the name “Nathaniel”, “meaning a precious gift from God.” So it had come to pass that this mighty creature was to be named Erwin Nathaniel. It might have been coincidental or perhaps a touch of fate, the baby’s name derived from a champion, ERWIN added to it the middle initial N had become the anagram of the word WINNER! Both parents smiled as they realized this, indeed the greatest beginning one could hope for!

Erwin passed all his physical milestones with flying colors. In some, like crawling and walking, he shattered the record that his older brother set.  He did all of his “firsts” earlier than what was considered “normal range”.  He was a climber with a great sense of balance. This sure-footed toddler always mounted his landings! His parents thought that a future gymnast was definitely in their midst.

Even his first words came earlier than when his older brother uttered his, no baby talk, clearly and distinctly he said “bubbles”. He would also call “daddy” whenever he wanted to be tickled.

            Sometime between 18 months old and his second birthday, Erwin had become quieter. Although still extremely active, his speech development seemed to have been stalled. The once “talkative” baby had suddenly stopped talking. His vocabulary didn’t increase. In fact, the extent of his verbal language seemed to have lessened considerably. Everyone noticed that he had become introspective. He had become for most parts, an observer rather than a participant. The vibrant twinkle in his eyes had been replaced with intense focus on anything that he chose to gaze upon.

When his second birthday passed and then his third, his parents knew for a fact that there had to be something “wrong” with their wonderboy!  For although he seemed to comprehend everything that was being communicated to him, he didn’t seem to have the ability to express what it was that he needed to say. So began his parent’s quest for answers. They insisted for him to be tested, but his pediatricians didn’t think there was anything to be worried about. After all, he was a boy and in general, boys tend to develop language at a later stage.

His parents viewed videos taken of his older brother when he was two and a half. The first-born son was already speaking in sentences and engaging in conversations at that age. Erwin’s spoken language was limited to a couple of words.  Pointing and grunting had made up for his lack of words. Again, his parents attempted to ask the pediatricians to have him tested. Once again, the experts said that there was not much indication that there was anything wrong with him. Besides, they were a Filipino family and from what the professionals knew, bilingual children usually developed language later too.

Frustrated with the system that won’t allow them to have their son assessed, Erwin’s parents took on a “vigilante” way of approaching this issue. Numerous hours were spent researching, finding anything that might provide a definition to what was wrong with their son. They were determined to find a way to put a label on this “thing” that seemed to be limiting their son’s ability to speak his brilliant mind!

On the next baby well care check-up, his mother brought massive documentation that she found on the Internet and presented them to the pediatrician. There were a couple of diagnoses that could fit the symptoms that their son had.  Nothing definitive though, except somewhere in the hundred pages or so of computer printout, it indicated that due to his severe language delay, her son was somewhere between someone having mild auditory problems to someone having severe neurological abnormality.

The pediatrician finally agreed to authorize some tests to be conducted. And thus Erwin’s evaluation “saga” began.  It started with a simple audiology test. The results were conclusive, he could hear! The tests escalated to having to meet professionals that all had the letters “ists” in their titles: Audiologists, Psychologists, Psychiatrists, Neurologists, Pathologists and all other kinds of therapists, Speech and otherwise! There seemed to be a non-ending supply of so-called experts who were willing to pass on a diagnosis to this precocious toddler!

After the dust settled, there were numerous high profile signatures attached to the twenty-five-page document that comprised Erwin’s diagnosis. “PDD-NOS, Pervasive Development Disorder, Not Otherwise Specified” was the official label to this “thing” that made this little boy so different from his peers. From the research that the parents did, they knew that this was some sort of a “basket” diagnosis. In layman’s terms, simply meant, the experts didn’t have any idea on what was wrong with him exactly, thus the Not Otherwise Specified hyphenated qualifier tagged to it.

  The coordinator that managed the whole evaluation sat with Erwin’s parents and started with a disclaimer: although he didn’t exhibit all the symptoms associated with the diagnosis, he did exhibit some. Because of his severe language delay, he had been categorized as having symptoms of Autism.  PDD-NOS was under the umbrella of the Autism spectrum of diagnoses. The coordinator further warned them that if they desired to seek any kind of service at all, a diagnosis MUST be rendered!

A diagnosis MUST be handed, so a diagnosis MUST be accepted. Erwin was officially labeled with the dreaded “A” word!  With enormous mixed feelings, Erwin’s parents wasted no time in finding a proper school placement for him, which in simple language meant, another round of unending tests! As if the rigorous hospital evaluations weren’t enough, another set of professional “ISTS” had the need to add on their signatures to the already binder thick diagnosis report.

A month shy of his fourth birthday, a placement was finally found, Erwin started going to a special education class that geared their curriculum to children much like him, living in silence, interacting in a world that didn’t seem to cater to who they were.

            His parents, in their desperate desire to custom fit the world for their language-challenged son, began to put up their defenses for the world that seemed to judge them for having borne a somewhat “peculiar” child. The misinformed family members passed on harsh judgments of equating the diagnosis with some sort of punishment for their past transgressions, whatever those might have been! Their heritage that took pride and put much emphasis in the legacy of excellence, didn’t quite know how to deal with such an “imperfect” child. However, in the parallel universe that Erwin was trekking on, he showed them an impeccable sense of perception, an innate knowing of what is and what would be. On that first day of school, as he took his mother’s hand, although no words were uttered, his mother heard what his heart was saying, she heard it loud and clear, “Come follow me, let me lead the way!”

A constant justification of his quirkiness ensued. Every little abnormality was blamed on his diagnosis, in retrospect though the so called-abnormalities were just simply characteristics of any new arrival trying to get to know his brand new world!

The issue about the “lack of eye contact” has always been a point of contention. Erwin’s gaze never lacked for contact. On the contrary, he remains focused on the gaze of those speaking to him. He continues to be engrossed in the moment and attempts to absorb everything that the other person tries to impart. He listens with intent to those who care enough to share their wisdom with him. In his parents’ native culture where “looking in the eye” is an indication of lack of respect, Erwin’s steady gaze has actually proven to be more of a judgment for the lack of decorum. On more than one occasion, when his elders commented about his eye contact, they didn’t complain about the quirkiness of it all, on the contrary they were critical of his parents for allowing him to be too confrontational, which was apparently very un-Filipino! Undeniably, it is with enormous regret that these elders who have spent their whole lives wallowing in their own miseries fail to see that with Erwin’s innate generosity, he offers nothing but his total undivided attention, something, most of them so rarely receive from anyone else!

            As his parents reluctantly accepted his diagnosis and the limitations that were associated with it, they were prepared to live a life in the midst of a child’s disability. They didn’t know where to find the courage to face such an uncertain future. They were bracing for the worst that was yet to come, instead as luck would have it, they found themselves entrenched in a world where days were highlighted with small wonders. They found themselves in a world where defiance to expert assessment was enough testament to merit miracles. His parents found themselves amazed as Erwin gradually showed them the enchantment of his world!

Being in their son’s presence brought a large dose of calmness, the intensity of which they had never experienced in their over-scheduled world. Erwin had a deep sense of serenity in his eyes that his parents, continually mesmerized by his gaze, couldn’t help but re-learn to trust, trust in their instincts and trust in the knowledge that this magnificent being came here for the all the right reasons. Many a times, circumstances proved that he came here to teach them, challenge their beliefs and in the process, enhance their world.

Gradually, his parents learned to abandon the knee-jerk defensive reaction to shield him from the outside world. For those who are fortunate enough to be in his presence, Erwin’s limitless ability for compassion, his ability to systematically ignore the mundane and his heightened awareness of the essential opened up a more majestic view of the universe.

 Inasmuch as his parents wanted to put up the highest barrier for his protection from the meanness of their world, Erwin’s compassion wouldn’t allow them to isolate him from the so-called “normal” world. Instead, in dealing with the rigors of living in a world that labeled him “abnormal”, he responded with the only kind of love he was capable of giving. The kind that was pure, untainted and unadulterated, the only kind that could bring down all the emotional barriers between him and the people who insisted for him to be just like them.

Words like betrayal and fear didn’t exist in his world. Instead, he had an elevated level of unwavering trust. Every time he graciously reaches out for your hand, he declares, “I trust you with everything that I am!”

For his “normal” parents who have been callously pained by all too many betrayals of trust, this intense honesty that their son was capable of expressing was a much-needed antidote for their seemingly dishonest, poisoned world!

In Erwin’s world there was no such thing as “idle chat”. Each word uttered, carefully selected. Each word spoken, sincerely meant. Each moment of silence, spent in retrospection! Never does he waste any sentences to pass judgment on others, nor does he waste any thoughts on ostracizing those, whose convictions are not like his. Instead, he has a strong sense of “feeling” the presence of those around him. For those who are generous with their resources, emotions and otherwise, he is attracted to, for those whose energies are completely self-absorbed, he instinctively repels from. However, unlike most of us who mask our instincts, to mold the “repulsive” person in our own image of them, Erwin and many who are like him have a great sense of respect for those who just want to “be.” Without prejudice and not an ounce of effort to change anyone, they step aside and with their whole being declare, “I respect you enough to let you, be you!” In his world of non-verbal communication, there is no other kind of acceptance but that of the unconditional one!

The silence in Erwin’s parallel universe is a far cry from the noise-ridden airwaves that dominate the “normal” person’s day. Perhaps, it is this precious gift of silence that allows him to focus on the essential bonuses that make his world wonderful.  The vibrant colors of the rainbow, the fluttering wings of the butterfly, the fascinating marching ants, the amazing feeling of having a drop of rain land on the tip of your tongue and last but not least, the natural rhythm of a humming and nurturing universe…these things, his parents have forgotten to appreciate until he came and served as a reminder.

 In his world of silent prayer, every sentence describing the sensationally simple is an expression of gratitude. In his world of silent meditation, adjectives like beautiful, amazing and wonderful when learned are used with a great sense of appreciation. How many of us have used these adjectives to describe our world lately? Perhaps, but a few!

As Erwin’s parents attempted to re-define their own world with what he has brought into their lives, they both realized that perhaps, the world they so wanted their child to fit in didn’t seem worthy enough for such a graceful, magnificent soul! Perhaps, this enchanting world of silence is how they wish their own world would be.  Perhaps, the attributes of this wonderfully non-judgmental world where truth and love reign was how their own world ought to be! 

Just as the season changed, the parallel world that his parents existed in was altered dramatically too. Their season of transformation had begun. For undoubtedly, Erwin’s reason for being is to provide a glimpse of perfection in their seemingly imperfect world!

So instead of mourning for the loss of their son’s future, instead of grieving for the loss of their dreams, Erwin’s parents have learned to celebrate his diversity from the norm. They have learned to “let go”, let go of their fears, let go of the expectations that society insist on imposing upon them. They have once again learned to trust, trust in the generosity of a loving, supportive and an abundant universe. They have once again learned to live in the truth, truth that is communicated not in the myriad of words but with the enormity of feelings.  With the help of a gentle touch from their incredible son, they have begun to view their own world in diamond shaped angles, where the light emanates nothing but brilliance!

There is something so endearingly familiar with this story. Perhaps because I am one of the fortunate few who have been in the presence of Erwin’s magnificence. I have lived in his midst and felt the greatest testament to what is. I have looked into his eyes and seen his lust for life.  I have been gazed upon by his eyes and viewed the reflection of his passion for the wonderfully mundane!

I was there when he arrived perfectly packaged!  I am his mother, the one who wanted him to be named, Nathaniel,  “The precious gift from God”. Indeed, a bequest derived from divine perfection!

Like any woman who has borne a child in this planet we fondly call Mother Earth, I am apprehensive about my son’s future. However, I do not dwell on that thought for I realized early on that there really is no such thing as a “secure” future. I have been witness to fully endowed lives that have been lived half-full.  I now find myself in the midst of lives that have been professionally labeled as “limited”, however made extraordinary by the sheer determination to survive. For it is not important what you have been given, it is what you do with what has been given to you that is essential!

The day they branded my son as deficient was the day I likened my motherhood to Alice who landed in Wonderland! Before my son’s diagnosis, I was never intent on learning about the biographies of the “eccentrically” great, the likes of Albert Einstein, Michelangelo and Andy Warhol. Their documented lives chronicle symptoms of Autism. In addition to their greatness, they all shared the traits of having been late-talkers as children and all three were extremely uncomfortable in crowds as adults. The most striking characteristic they had in common was the intensity of their focus to their chosen vocation. For if you think about it, what “normal” person can spend years atop a church, away from the maddening devotees, to create such a masterpiece as the Sistine Chapel ceiling?  What “common” man can visualize the flawless beauty of the statue of David in an ordinary slab of Italian marble?  What regular patent clerk can get intrigued enough to figure out the Theory of Relativity? On the same trend of thinking, which “average Joe” can find the existential meaning of life by painting a giant version of a Campbell’s soup can?

I do not have currencies by the millions to start a foundation to find a cure for what ails my child. I am but a lowly suburban mother who has dedicated her time and energy to easing her child’s transition to the rigors of normal society. I am a woman who in the process has found the most vital piece of her humanity, the one that defined the purpose by which she chose to be in this lifetime in the first place.

I do not have a grand illusion of educating the masses about my son’s “disabilities” in order to justify his existence or that of mine. I do however have a dire need to share my experience. I would like to put whatever wisdom I might have garnered from this process, somewhere in this world’s consciousness. I would like the rest of the “normal” world to know that there is a parallel universe where a multitude of “non-normal” exist, where mundane rules do not apply and where boundaries are perceived as nothing but indicators of achievement.

History has generously provided us with their splendor. Their eccentricity has produced most of what we now treasure as masterpieces. Unfortunately for them though, the only entrance ticket that the normal society is willing to accept is for these so-called misfits to be nothing less than absolute geniuses.

Perhaps, in being able to chronicle my son’s life, I can pay homage to the millions of children who have been branded like him and their parents who have been harshly judged like us.  Perhaps, in rejoicing in my son’s astonishing endeavors despite the disability that limits him, I can somehow express the deepest of gratitude to the teachers, caseworkers, therapists and all of the people who have offered their compassion along the way. Perhaps, in being able to slightly open the door to such a world, those who may choose to enter might have a glimpse of divinity!

I do not know where my enigmatic son’s roller-coaster path of enchantment will eventually lead us, but so far, it has been a heck of a ride!