The World of A- an essay I submitted for the Palanca that didn't win

My jaw clenched when I saw the ocean of glistening cars in the midday sun.  Then the first wave of sweltering punches arrives, sudden and intense. I patiently absorb the thuds on my car seat. It grows stronger as his wild frustration agitates him, the idling cars triggering the rise of the tempest. The howling beside my ears intensifies and a hard tug radiated in my scalp. I desperately pull my weakened strands from his determined fingers. If he doesn’t let go, I will have to resort to intense measures like painfully squeezing his stubby fingers or biting it if I have to. Wow, what a scene must we look like, I thought, mother and son grappling inside a vehicle in the heat of day.

When the cyclone leaves, the sun rises in his eyes, melting all traces of the aggression that occurred.  But I’m not always unscathed because a surprising irritation can translate to a lightning headbutt, a tumultuous earthquake rocking my senses leaving me to endure a prickling frost tapped on my bruised cheek. This is my world now, a world interspersed with his, a world not many will belong to, only those selected smiled or cursed by fate whatever your state of my mind may be. This is a world that is continuously unfurling, surprisingly temperamental and each revelation is awaited with unflinching anxiety.  

But before I was transported here, I thought I already passed the worst catastrophes in life from broken childhood to shattering losses of loved ones. I also thought that I passed the rites of motherhood after surviving an arduous labor and weeks of unbearable fatigue from hovering at his crib while the rooster slumbered and lurid thoughts of scraping my wrist kept me company.  I was wrong it seems, this was only the start. After the kinship of early morning feedings with other mothers has passed, I was led to a different path in the Motherhood road. Some went to la la land and I, and a handful of others went straight to the land of the lost.

It is a land where disturbing thoughts of the future stretches like lands of scorching desert or plains of immaculate snow, when disheartening realizations become furious tsunamis crashing all your plans with fury, wasting it as an obsolete part of the past. It is a world deformed by a cruel asteroid. And  not many people will enter this warped world, this surreal universe I’m in where tempests abound riddled with icy storms, searing heat, cascading floods and sudden earthquakes. This is my world now, this is my son’s world, a world touched with autism.

Silent darkness…Crashing earthquake.

I didn’t wake up in this world in an instant. I weaved around in darkness as others silently watched. Before the doctor confirmed my fears, ominous signs like his almost nonexistent words at three, lining up cars obsessively in a straight line, watching the whirling electric fan blades with absurd fascination and irrational fears of entering unfamiliar rooms hovered in my thoughts, wondering if these were parts of childhood quirks or parts of a more serious developmental problem.  When people in authority offered no clue, letting me feel my way through the abyss. That time I can’t fathom my pediatrician’s uneasy smiles when asked about my son’s condition though she repeatedly pushed me to contact her developmental pedia colleague. My father, also a doctor urges me the same, have him checked by a specialist. No one told me of their worst fears, no one wanted to be the bearer of a doomed verdict, conveniently closing the door to a lost person.

Feeling my way through the bleakness of space, a neutral angel emerges, the internet. It silently unwrapped its wings and revealed some symptoms that characterized different ailments, one of which is autism. Reading this word though, I felt like I was in suspended animation, one where I awaited to be gloriously enlightened or wretchedly devastated. Still, my husband clutched his to slivers of hope, confidently guessing that it must be ADHD. It was sweet ambiguity. I wanted him to be right, so much, especially this time. Then the asteroid hit. A doctor confirmed it. Autism.  I felt my world triggered an earthquake so catastrophic that it carelessly decimated all structures that adamantly refused to bow before it. The doctor was speaking and I couldn’t hear it. Like survivors in a crash and an unforgiving quake I was confused. There were no hysterics and the world fell silent. Life carried on for others but I was never the same again. Suddenly, I was different from the rest of humanity.

A part of me died that day, the part where wistful dreams for my child resides, the part where I can see a multi-hued future. I only saw the absence of light because it is a future aggravated by a creeping fear within, one that hysterically cried, who will care for my son?  What will happen to him when my stiff hands have been ravaged by age and I can’t smooth the wrinkles of his clothes and lightly wipe the smudge off his cheek? Who will comfort him when I am at my deathbed, feebly wrestling death to the finish and my last struggling thought will be about his welfare. How will I leave a helpless adult at the care of others who may not understand? Whichever way I saw it, a tragic ending seemed to await us. Gathering him in my arms, I saw a child who may not marry, raise kids, talk back, someone who can argue with me or slam the door. Maybe I won’t have those. I might not even have a grandchild.  Looking back, the tears I shed at dark altars rivaled the gushing, uncontrollable waters of Ondoy. Bargains were made to spare my son and I offered all the wishes and prayers I have in all my days, for all my birthdays, all my Christmases. I offered it like mothers offering their children to GIs leaving a war torn Vietnam. Take him, save him. But the silence dripped within me as the reality of another, unknown world dawned.

There are no books to prepare you for this, when your world transforms into a scary world, when tantrum storms erupt for no reason, when aghast stares follow you like rapacious vultures waiting for their prey and when the isolation freezes like a polar wind. I live in the world of A. Some people live here too and they cope. All of us have learned to. Sometimes I pass other travelers in this world, mothers like me, coping, worrying. Like veterans in a forgotten war, we exchange stories with forced hilarity, trying to mask the hard realities we’re facing with veiled humor. And one of the hard parts we discuss is the inability of our kids to converse, when you have to prompt them to speak.  So it is both a joy and a pain to hear other kids talking to their mothers when one word from our children is a hard-fought reward.  Fortunately, my son have started to utter words, three -stringed words I can wriggle out of him, luring him out of his world. In a strange way, I am fortunate that he can communicate and I won’t have to decipher grunts and wails anymore. But there are still unknown landmines I have to live with. He still hates the sound of high-pitched voices like a female voice on TV or sounds of women eating on the dinner table or unbelievably, background music of some movies or TV shows, slight detection wakes the hurricane inside him unleashing it, throwing him to the ground, kicking and screaming. I read it up and some experts call it sensory integration problems. Somehow, these sounds arrive to him in a distorted manner. Then there are moments when he suddenly becomes fearful in a mall and closes his eyes while walking. Something may have caused it, a light, a sound, an image. It is a normal world for you but to him, certain sounds or sights can be debilitating. It is a world we both learn to survive.

Sitting on the hard steps of a therapy center watching cars passing by, people walking, I wonder if they would ever know what people from the world of A are going through, the sadness, the uncertainty they feel for their child’s future. It  is a world where finances almost double with therapy sessions, special schools and assistants even if the staggering reality is there is still no cure for autism, that measures are set so these kids can function in daily life, learning how to eat  and dress by themselves. And parents can only hope that they have saved enough so their child can be provided for after they’ve gone, hoping that a stable financial future could ease their palpable fear that their child would be alone, unattended and unloved.

Torrential rains…Melting lava.

The rains come regularly after the great quake and it’s not coming from above, the water flows from my eyes. It feels unending, pounding at inopportune times. The first few months of discovery feels like waking up in the middle of battlefield, chaotic, devastating. There is almost no one to talk to because not many people understand this ailment. There is also a feeling of being lost, wandering without a map, hoping to get to a destination you’re not sure exists. It happens when new behaviors baffle me, when no answers are given and I have to bear it until it goes away or until I get used to it.  I often look at him while playing, silent in his own world. Then he smiles and the clouds break, flooding moisture to my cheeks. How can something so innocent as a smile hide something so difficult and heartbreaking?  

Echolalia. Occupation Therapy. Speech therapy. Stimming.  I hear these terms over and over from doctors to SPED teachers. I have also learned other medical terms after ingratiating myself on autism books and scoured the web for alternative treatments. But there is no specific remedy for autism. Each child is different. Some may be better at talking while some have lesser tantrums. Others like my son have severe sensory integration issues. Then just as I’m untangling myself from these unfamiliar medial concepts, another part of this world unfolds.

Deep radiations of antipathy begin to sting. Bold stares, loud whispers about my son’s outbursts begin to irritate me. I tried to develop a thicker hide so the heated cuts wouldn’t permeate so much. But when it seeps inside a flicker of anger is usually awakened. With total strangers, the hide works and you can almost forgive their ignorance hoping that they were better informed but when relatives keep you at bay because of the inconvenience of having your child around, the hurt turns to anger. With all your sensitivities heightened, the lack of tact bruises you because additional jabs like this make the load heavier. Fueled by isolation and confusion, the pressure often builds and eruption occurs, fiery lava of words begin to flow freely, melting weak bridges along the way.

Artic Wind… Rays of sun and Eclipses

Ruminating about the future is walking in a field of unending snow, serenely white and eerie. No sun, only nimbus skies. Grating wind brushes in varying degrees, fear and desolation. I don’t know where I’m going and where does it all lead to? Exhausted, I sometimes huddle in a cave, give in to self-pity and stare at my ragged sanctuary. Fatigue pushes me down, succumbing me in this Artic surroundings. But often rays of sunlight filter through this encased sanctuary, valiantly escaping the icy skies and illuminating my harsh cavern. Voices of trusted friends of close relatives envelope this cave, their concern warming and comforting me.  

Lying down sometimes, wracked and weakened, I go through a bout of wishful thinking. What if I didn’t marry and had a child? I could have been an avid traveler not a wife and mother burdened my domestic duties. I wouldn’t know about this world and I would still be me, not an automaton anticipating and nourishing a child’s every need. I would still be self-involved, juvenile instead of selfless and matured. My soft hands would be retained not calloused by dishwashing lather. My pictures would reflect my spoiled youth not the wisdom I collected from the hardships I encountered. Distanced from the naïve life I once knew, I have adapted to this hardy environment, my life is now a boot camp drilling me into drudgery, forging my character into a stronger core.

Twinkle, twinkle little star, how I wonder what you are, up above the world so high, like a diamond in the sky…  yes, just a harmless nursery rhyme. But when I hum it, my son crumples and cover his ears while shouting no more, no more! How can the sound of my voice irritate him so that he hits or spits at times? Funny, I’m sure I sing on tune. Why does the music from some movie make him tailspin and rush out of the room as if in pain? My husband and I couldn’t even watch a decent movie without him making a dive to the covers, screaming and his hands on his ears. Simple moments for others it but formidable events for us, it strikes without warning.  If other people could just know what we live with everyday, what we bear in addition to the struggles of daily life,  on top of constant bills, marital concerns and chores. It is clambering up a mountain with a heavy sack or a thorn in your thigh. You climb no matter what, you don’t acknowledge the pain. You haul yourself up even when it throbs.

The Manila traffic is not only a bore to some or an inconvenience; to us it is a scourge. My son likes things on the go and when everything is at a standstill, his fists and his feet are up in the air, thumps and strikes abound, sometimes hitting you on the head. Scratches and pinches are also a staple and you try to deflect it as you hold on to the wheel. Like carrying a young bull at the backseat, there is no peace as you pray that the traffic would ease up and he can crane his head at all the vehicles passing along.

Traversing the unforgiving world of A, I also encounter full eclipses, darkening my world momentarily, causing panic. Glimpses of the future reveal itself in unexpected moments. My husband and I were hearing mass with my son outside the church when we saw a father with his son who seems to be of the special kind too. The latter is in his teenage years with his hairy legs and maturing physique. Unlike my son who is busy running around the gated playground, this young man was sitting silently, his father standing like a guard on alert. He then quickly hands a small bag of chips he keeps on his back when the boy stirred. I avert my eyes in case he glances our way but something silently descends on me, the same feeling I have when I meet older kids with autism, the sense of dread. My mind will again be overrun with questions. Will my son look like that when he’s older? Can we possibly take care of him as an adult when we’re in our old age? When he’s bigger and we can’t handle his gigantic tantrums?  Would we have enough money to hire bulky assistants to help us? I wonder if that father knows if my child has autism or if he is reminded of his child’s younger days when he saw him? I hope not. It’s hard for me to see this, to see what the distant future may offer.

Then I also remember a teenage boy staring at me in a lobby of a special school, he was obviously waiting for his ride. He was looking at me and making strange noises. I knew what it was a form of stimming, repetitive behavior but I was still unnerved.  I remember my son making noises like these at times and I feel the dread again. Will others look at him like this and wonder if he’s crazy and fear him? Or will he be seen as a heartbreaking sight like the eighteen year old girl I also saw, rocking back and forth with scabs on her arm? She was still in diapers I heard. I look at her and the other kids with autism and I remember my son, I remember the world I’m exploring, the one me and their parents are still surviving.

They say that when you discover that your child has autism, you mourn even if he is still alive. You mourn for the boy who can win scholarships, do a fast break in a basketball game and sit in a coffeshop with a girl he likes. I have mourned that. But I have tried to move on because my son lives in a different world, in a different dimension if you will. He won’t be the boy who will go to fistfights or experiment with drugs because he will have a more structured life. Maybe for that I should be grateful

Sunrise and Rainbows… Treasures

It’s been four years and in June it will be five. I would like to say that I have adopted myself in this environment but no, everyday is still a minefield, an uncharted world carved with unpredictable weather. Each storm still tests me. Each new discovery marvels and dismays me. And I have no choice. I have to live here. So despite the harsh terrain, I still load myself with pails of patience and compassion, hoping that it could trickle down to my son’s parched understanding. I shower it on him so he can thrive and wouldn’t escape to his own world. And I cultivate his stubborn soil of sensory problems with gentle firmness to push him beyond his perceived limits. If there is progress, it is slow and a result of a multitude of embarrassment and hardiness.

My wandering has also not been fruitless because I am starting to witness magnificent sunrises along the way, shading the sky with amber hues and orange shades. I have began to hear stories of thriving autistic children, going to school, finishing college and going to work.  Moreover, new words have also began sprouting in my son’s vocabulary like small leaves slowly pushing itself out the dry soil.  Heard on television, he imitates these words with abandon. And after brushing his nose to my hair, he now looks me and acknowledges me as Mommy.  To be recognized by your child especially one diagnosed with autism is a sparkling gem I clasp with care and treasured more are the ruby red jewels forged by the words Love You Mommy, a priceless find painfully dug from the dirt bed of autism. An added treasure too is his newfound sense of empathy. He has began caring for his menagerie of stuffed animals and toy cars with parental care, covering them with a blanket like children asleep and feeding them cereals. He has started to step out of his world and I’m glad that he has recognized me.

In addition to witnessing the brilliant sunrises, I have also encountered bountiful rainbows in the gray sky in the form of dog-eared informative autism books excavated from secondhand bookstores and stories of new and alternative treatments. Being thankful for these events is an understatement. It has given me renewed vigor that maybe I may not be alone in this journey, that something or someone is leaving me clues to find the right path to maneuver myself in this world. Moreover, new encounters with group of travelers comprised of mothers, fathers, and grandparents have also increased. Like feverish nomads finding temporary shelter from blustering sandstorms, we exchange stories about our wards, our struggles, our fears and our hopes. For a while, we feel like kindred spirits not outcasts in the “normal” world.

More than anything, I discovered a lot about myself in this world, my ability to endure and survive even the hardest emotional terrain possible. It has been a test of faith, of strength, of courage. It is finding the good in the bad, finding treasure in the catastrophe and finding hope in the midst of uncertainty. My son is only four years old and I have been in the eye of the storms so many times and I know this is still the beginning. I brace myself for more tempests to come, arming myself with excavated knowledge, gathering firewood of support from friends and family. Honestly, I don’t know what the future holds, the same way nobody does but I’m preparing for it, mentally, emotionally and little by little financially. It is my only hope that I can always take care of my son but I know it is not always possible. So now I am I have decided to put my trust in the basic goodness of people, the inherent part of our nature to take care of the weak, the helpless, the visceral part that is still there, that even if I’m gone there are still people who will care for him.

And when I think about children who won’t be diagnosed because their parents were poor or uninformed, I worry for them. Without the proper early intervention, life can be harder for them because I know how difficult it is to live with this disease and the financial and emotional cost it entails.  Undiagnosed and abandoned, some of these children could wander the streets bathed in soot unable to speak or chained in empty rooms labeled as possessed or deranged. So here goes another part of this journey, to give aid to new travelers in this world, point them to professionals who can help or just be a friend who can empathize and cry with them when the asteroid hits. Maybe when they have learned to adapt in this world, they can also witness their own sunrises and rainbows.

 I’m still worried when I see the traffic ahead but I’m no longer as terrified. I have learned not to let him control the situation and let the fear engulf me anymore. I would tell my son to stop hitting, fixing my eyes on him, drawing in the strength I have harvested from this world and psychically implying a mightier force of nature within me. I enunciate each word with a firm voice implying a threat of a thousand tornadoes if he doesn’t cooperate and the tempest gathering in him weakens. There are still some eruptions but I now counteract it with a cold front, freezing it down until it evaporates and the sun rises again. Sulking in the back, fiddling with his toy, I can now relax and smile as I realize nothing beats Mother Nature even in the world of A.