On weekdays, I enjoy the relative peace and quiet of a household with just Alphonse, his nannies, and myself. The addition of two grown, lumbering males in the household during weekends (Alex and his dad, the Big A) often screws up the delicate balance of things and I jump from one end of the scale to another to prevent it from tipping over. Sometimes, though, not even my magic supermom powers can stop our world from spinning off its axis.    

Teacher J was absent for most of last week to take care of an ailing parent. He also missed this week’s Monday’s session with Alphonse. As a result, our home schedule was shot to hell and Alphonse, short of declaring a sit-down strike, refused to work at any of the times his morning teacher was absent. During the week, we were able to coax Alphonse a few times to join his substitute teacher in the study room (his afternoon teacher serves as Teacher J’s sub,  as she willingly takes the slack when Teacher J is absent) but his sessions were often disrupted with aggressive episodes. On the last day of the workweek, Friday morning, he was dressed early and prepared to work again with the substitute teacher, but as soon as he noticed Teacher J’s absence, he ran back upstairs and huddled beneath a pile of coverlets. He squeezed his eyes shut, started a stream of verbal stimming, and refused to budge from under the sheets. We had to bodily drag him out of bed and force him back to the study room.

It was the same thing all over again Monday morning. Monday was a holiday and the boys were all at home. Aside from his teacher’s unexpected absence, this was another point for concern as Alphonse relates his brother’s and father’s presence with weekends of relaxation. We stuck to his schedule as best as we could but the unexpected changes  seemed to gnaw at him. He was impulsive and disorganized. He refused to look us in the eyes. He whined continuously. Many times, he would try to run off. By midday, he was visibly edgy and uneasy; we could sense that his mood was volatile and explosive. I crossed my fingers, took a deep breath, and mentally steeled myself for a full-scale meltdown. I didn’t have long to wait.

At lunchtime, while I prepared his food, he ran to the refrigerator and threw everything he could grab to the floor. The first casualties were a dozen eggs, followed by a Tupperware of leftovers, half a loaf of bread (which he casually ripped into little pieces), and a jar of peanut butter (which bounced, thanks to Skippy’s child-friendly packaging). Thankfully, we were able to stop him before he could throw away a week’s worth of provisions.

Since he was covered in egg yolks (and whites), he had to bathe again. While I supervised his bathing to give his nannies some time to pick up after him, he zeroed in on me. I was caught unaware when he deftly plucked my eyeglasses off my face and proceeded to mangle them with as much strength as he could muster. I was able to grab hold of the lenses to prevent him from smashing them to bits, but as I did, he twisted the frames more at the edges. And because he was still slippery and wet, we grappled a bit before I could get a hold of his hands.  By the time help came, he had completely ruined my only pair of eyeglasses (he had ruined my other pair a few months back and I haven’t had time to get another pair). I couldn’t even see him clearly anymore.
 
A took charge of Alphonse while I got dressed (in the tussle, Alphonse got me wet). I had actually anticipated this- prepared myself for it even- yet when it came, it still caught me unexpected. Alone in my room, away from Alphonse, I cried.  

Then I wiped my face clean and dry, and walked out of the room to meet a forlorn boy sitting by the steps of the stairs with his dad. He stood up to kiss me gently on the cheeks, a soft, tentative kiss, as if expecting to be met with anger. When I gave him a slight smile, he slid his arms under mine and hugged me. As he burrowed his head on my shoulders, I heard the faintest whisper.

“Ayayu.” (“I love you.”)

When our world spins off its axis, sometimes it takes its own sweet time coming back. 

No, this is not an homage to the seventies’ hit show Mork and Mindy, though I am reminded of it each time I hear the word Nano. Mork (Robin Williams) and Mindy (Pam Dawber) brought into our consciousness a sense of quickfire humor, as well as the cultural hallmark of the era, the “Nanu-Nanu” (Orkan for “hello”) and its accompanying hand signal. And while I would love to reminisce more on my era of growing up, this post isn’t really about Mork or Mindy, but about Apple’s iPod Nano.

I’ve been fortunate enough to acquire the new 3rd generation iPod nano in pink, a gift from my gadget-geek husband who knew that his gadget-geek wife appreciated, well, duh, gadgets. I’m not much of a flowers-and-chocolate kind of person, though he does buy me flowers weekly (mums and chrysanthemums), and he indulges my sweet tooth very often, perhaps much too often. :-) But for special occasions, we both agree that while flowers may be beautiful and romantic, they wilt and die all too soon, and decadently rich chocolates in a fancy box get eaten just as fast as they are unwrapped, the sweetness gone before they are even savored. As such, nothing beats a gift of a gadget (or a household appliance.) Rather unromantic, some would say, but not for a gal who get chills down the spine just from the letters P-S-P.

For Valentine’s Day this year, A got me three gifts:
a.) a Hello Kitty Nintendo DS Case to add to my collection of Kitty stuff.

b.) a Belkin USB laptop cooling stand which I soooo love because my laptop does not overheat anymore even after four hours of The Sims2  It makes me wonder, how did I ever live without it? (You can see a great review of the item here.)

c.) and an eight GB 3rd generation pink iPod Nano.

This is my 3rd ipod in as many years. The first was a pink iPod mini, followed a year later by a 1st generation iPod Nano in black. (See it below, dressed in a Kitty case.) The mini and Nano1 still work perfectly (the batteries haven’t died out yet, thank God!) but the new iPod is a most welcome gift, as Alphonse will be the direct beneficiary of an older unit. Just to show you how attached he is to pink (okay, okay, blame the mother…), here is a snippet of the conversation we had today.

Me: Look, Alphonse, two iPods! (Mom points to mini and Nano1)

Alphonse nods. “Yes”

Me: Do you want to have one?

Alphonse nods again. “Yes”

Me: You can choose which one you like. Black or pink? (Holds one on each hand.)

Alphonse flashes a big grin, and shyly points to… pink.

Me: You can have the black one. (Mom instantly regrets giving the child a choice. Talk about confusing the poor child!)

Alphonse shakes his head emphatically (“NO!”), then makes a grab for the pink mini.

Me: Well… okay then, pink it is. 

He then puts the earphones in his ear and motions for me to play his favorite songs from the Joseph King of Dreams soundtrack. He is in bliss.

Ah, a son who loves pink. What did I do right?

Whenever people meet Alphonse for the first time, they can’t help but ask questions. Most of the time, their first question would be, “Was he born with it?” to which I would reply with a straight, no-nonsense “Yes.” While Alphonse was officially diagnosed at eighteen months, looking back, I can’t help but see some of the signs. Like how fond he was of squinting at lights even at three months old. Or how, at eight months, he’d play with the rotor blades of his Fisher-Price helicopter, twirling it round and round and round, blissful in his seemingly endless escape from the demands of the world. Little signs, yes, for Alphonse was still connected enough with us and it was easy enough to ignore them as merely quirks or eccentricities in his personality. After all, who among us doesn’t have a flaw or two?

Then they would ask more questions, like “How did you know?” and “What are the signs of autism?” These are easy enough to answer, and for the most part, these require straightforward replies that smack of textbooks.

Once in a while, though, an unexpected question blows me away, and I lose almost all poise and polish as its absurdity completely floors me.

“Do you believe that autism is caused by diablos (demons)?”

A few days ago, I came face to face with a man who asked me this question. He had come into the house to do some repair, and since my husband was not home at the time, I was left to supervise his work. He was a chatty fellow and he noticed Alphonse running playfully around the house. He started asking questions when Alphonse came up to him and gestured to him to play.

At first, it seemed benign enough, and I wanted to be polite. From general questions about my son’s condition, he segued into spirituality. We agreed on some things, and despite some differences in our religious beliefs (he calls himself a born-again Christian, while I think of myself as Catholic Christian), we both believed that the path to salvation is one and the same. He quoted scripture with a flourish. I smiled despite his increasingly insistent tone because he reminded me so much of a Bible-toting preacher. But then, he took a step further than I liked with the discussion, by asking me the worst question in the world to ask a mother of a child with autism.

“Do you believe that autism is caused by diablos (demons)?”

My eyes widened in disbelief and I was forced to cover my gaping mouth and pretend a yawn. I didn’t want to offend this man whom I’ve only just met. Yet I didn’t want to stay there saying nothing at all in my son’s defense.

He obviously didn’t notice my increasing discomfort. He continued along the same line of thought: that man’s sicknesses, disabilities, and impairments are the work of demons and we only have to believe and have faith to be healed. That children born with disabilities are the handiwork of evil running loose in this world, challenging God. He made it sound oh-so-perfectly reasonable, but it is precisely this narrow-minded, perverse view of autism that has caused many a child to die from ignorant, intolerant, and relentless pursuits for a cure.

In truth, I was itching for a full-scale showdown. My beliefs against his. While I certainly do not discount the possibility of evil forces in this world, I bristle at the thought that my son’s condition is an offshoot of the devil’s work. This would imply that my son is “evil” at the core, and that he, or we, his parents, somehow deserved this. That autism is a “punishment.” That autism, like other disabilities, is justice meted on the “guilty.”

I looked him in the eye and politely responded, “Excuse me, sir, but I would have to stop you there. I do not believe in what you say. My son’s spirit is perfect, and if he is who he is, it is because God made him that way. Not to teach him a lesson, but to teach us — the people around him — lessons on tolerance, forgiveness, love, and mercy. He was made imperfect to perfect the spirits of those around him. He is not of the devil’s; he is not of your Diablo’s.” I was shaking then. It was all I could do not to ask him to leave.

Ruminating upon this experience, I have had to ask myself questions that seek the core of my faith. If I did not believe that autism is a manifestation of a spiritual condition, why, then, did I bring my son to healing nuns and priests for blessing? Why did I stand in line and bear more than five hours of waiting for Alphonse to be prayed upon by Father Suarez last year? Why did I seek Sr. Raquel? Am I a hypocrite? To believe that my son is perfect and yet look for a “cure?”

In the beginning, when I was much younger and naïve and yes, stupid, I looked for a “cure” wherever I could find it. In religion, in science, wherever, whatever. And like many other parents who desperately wanted to change their children into the world’s definition of “normal,” I fell into this trap of my own making. As I grew in love, wisdom, and spirit, I realized that as much as Alphonse needed help in coping with the world, I needed to accept him and embrace him as he is. More than the autism and the host of challenges that come with it, Alphonse will always be, first and foremost, my son.

And so, when I sought Father Suarez last year, or Sister Raquel or Father Corsi many years before that, I did not pray for Alphonse to be healed of his autism. I prayed that Alphonse may find his happiness. I prayed for an end to his hurting, to his anger and violence. I prayed that Alphonse learn of how great our love is for him, and knowing this, find solace and comfort in our arms when he is fearful of things. I prayed that he know his parents would move heaven and earth to help him and his brother be the best that they can be.

No, I no longer pray for a cure. Today, I pray for tolerance and acceptance in a world that sees beauty only in the perfect and whole. I pray for a little slice of the world, where Alphonse, and many other beautiful children like him, whole or not, normal or differently abled, can revel in the gifts that have been bestowed by our merciful Creator. And I pray for all the love the world can muster for my son, on Valentine’s Days he will never fully experience, and for every day of his life.

Happy Valentine’s Day, angel of our lives. Papa, Mama, and Kuya love you so much.

It seems only yesterday, when I delivered a scrawny little baby boy by emergency caesarian section. He was six and a half weeks early, a frail little thing who fit snugly in the small crook of my arm. He was the one who made me a mother.

Today, he turns fifteen, no longer a child, no longer my baby. Where before I would kneel down to look him in the eye, these days, I have to tilt my head up to look into his. I have to remind myself that this young man who stands tall and straight before me is the same child who slept on my bosom most nights, afraid to let go. Some days, I am the one afraid to let go.

On his fifteenth birthday, I wish for him the world on a platter, served sweet and succulent, and life in its fullest measure, sucked dry to the marrow. I wish him a million joys and a thousand successes. I wish him love, gentle and true. Yet, I wish him too the salt of tears, once in a season, so he will know grace in defeat and valor in fear, for a man unused to being broken can never be whole. 

Happy Birthday, Alexander. I do love you so.

~0~

The following piece was written for Alex on his twelfth birthday.

The Other Son

People often refer to me as the “mommy of Alphonse.” In part, it is because I rarely write about my other son, Alexander. In large measure, it is simply because they know me best as a parent and advocate for my child with autism.

Alexander is my neurotypical son; in autism jargon, this simply means that he is NOT a child with autism. He has a normal neural network that processes information and stimuli the way you and I do. In short, Alexander is normal. This is both a blessing and a curse for him.

For all his normalcy, Alex has always been a precocious little boy. He spoke at six months of age. At eight months, he could mutter words like “wower” for flower, “bobo” for ball and “boo” for book. By age one, Alex was no longer using babyspeak, though his lispy enunciation was so cute we didn’t bother correcting him until many months after.
Alex also learned to read much earlier than his peers. At age two, when other little boys were simply beginning to expand their vocabulary, Alexander was already sight-reading. His instinct for associating words with their written counterparts was uncanny. At three, he could read phonetically and, a few weeks after that, he read just about everything he could lay his hands on.

He could pick up languages too. After just a few hours of hanging around with his Nippongo-speaking little Aunt Mina (she was five, he was three), he was able to converse with her in a smattering of Nippongo and English. Today, even as his Nippongo-sparring partner Mina has returned to Japan, he still carries this love affair for the Japanese language in his heart and continues to hope for the day when he could finally go for formal classes in the language.

Yes, Alex has had it easy developmentally. While little brother Alphonse crawls and struggles for every inch of learning he acquires, Alex continues to learn in leaps and bounds. Yet, being “normal” has not always been an easy road for him.

Alexander carries a special sorrow in his heart, one only a sibling of a disabled child can understand and empathize with. He has learned to live with the knowledge that while he is not alone, he actually is. No other person can know what it is to feel like being an only child in a family of two children.

When Alex was much younger, he would take his brother’s hand and push, or pull, even bribe and cajole, his brother simply to get a reaction, any reaction. Many times, he was met with stony indifference; Alphonse would not even deign to give him a glance. At other times, Alex was pushed back so hard he would cry. Sometimes, when exasperated, he would shout “Alphonse hates me,” and run away, only to come back to my lap sobbing and asking why. We had the answers we were prepared to give: that Alphonse is different, that his brain is different, and that he could not understand many things we took for granted. I would hold Alex until his tears dried up, and when he left my lap smiling, I thought he understood.

Then one day, he suddenly developed a fascination for money. It was cute at first, the sight of a five year old counting coins and paper bills. We called him little Alex Keaton, after the business-minded, money-obsessed child from the nineties television series “Family Ties.” He asked us for an allowance, and when we agreed, would remind us dutifully when he was supposed to get his one-peso coin. He coaxed his grandfather to part with absurdly large sums (Alex specified that he wanted one thousand and fifty-two pesos). He played the “cuteness” trump card repeatedly and his aunts and uncles willingly donated to his cause.

By then, we realized that it was getting out of hand. Once, he had even asked a classmate in preschool for two pesos. Furious, I took him by the hand and demanded an explanation. His words failed him then, as silent tears streamed down his cheeks. “I was saving money to buy a brother,” he whispered in quivering voice. That day, we realized that autism had robbed this little boy of his dreams for a friend and a brother.

There have been many similar events since then. Of a frightened Alex crouching into a ball and hiding from a little wisp of a brother bent on wreaking havoc and destruction in our home. Of a tearful Alex patiently removing his brother’s tightly wound fingers from my hair. Of a persistent and relentless Alex forcing his brother to hug him, and being rebuffed again and again and again. Of a heartbroken Alex woefully shedding tears when Alphonse would chew on his books and Yu-Gi-Oh! cards or bite the head off his action figures. Some were extraordinary events, and some were everyday little things that ate at his heart. These were, and are, autism’s curses.

“Was it ever my fault, mama?” he asked me once of his brother’s autism. He remembers, surprisingly well, how when he was a toddler and his brother was a newborn, he would bite his brother’s fingers. Alphonse would howl in the inconsolable way newborns have, and curious Alex, not knowing any better, would try again. He remembers these with a twinge of guilt, as if his toddler’s mind could grasp the complexities of sibling rivalry. He had carried this guilt for many months, he said, and could bear it no longer.

“Of course not!” I emphatically replied. I assuaged his guilt and remorse and explained how autism cannot be explained by one single event or circumstance. It is precisely this nature of autism that makes it difficult to understand, difficult enough for adults and even more incomprehensible to children.

One afternoon, a few summers ago, after a long and tiring day babysitting Alphonse at home, Alex cryptically uttered, “Sometimes, I wish I had autism, too.” He looked at me with sad, wan eyes and continued, “If I were autistic, I would understand Alphonse better. Then he won’t be alone in his world. He’ll have me and we can be friends. He’d love me then for sure.” Before I could reply, he dashed off, with one finger poking his eye in imitation of Alphonse. “Whee, Alphonse, here comes autistic Kuya (big brother)! I am special, too!”

What does one say to that? I could not find the words to tell him that his love for a brother who didn’t know how to love back was an incredible gift to us. That his heart was a gift. That HE was a gift. I ran after him and hugged him tight.

Alexander is 12 today, on the cusp of manhood, yet still on the fringes of a short-lived childhood, much too short, perhaps. Living with his brother, he has had to grow up and mature faster than his peers. He has had to take responsibility for a person other than himself at a time when his own definition of self has not been cast in stone.

He has had to learn patience early on for a disabled brother who did things slowly, if at all. This gracious acceptance that being different isn’t bad at all has strengthened his tolerance and sensitivity for other people’s differences. My son knows no prejudices, and I am most proud of him for that.

And my son knows love. Love for someone who loves him now, albeit in a different way. Two years ago, Alex said, “I think Alphonse has learned to love me.” Alex’s persistence finally paid off. He must have been rebuffed a million times, but he didn’t give up. He kept at it, day in and day out until one day, Alphonse snuggled close to him, willingly, without reservations. Alex almost exploded with joy.

Maturity, acceptance, tolerance, and love. These are autism’s blessings.

I write now of my son Alexander, love of my life, pride of my heart. Too soon, I will have to let my son go to let him find his wings on his own. Already, I feel him pulling away from us at times, and it scares me. Today, however, while he remains a child, I want him to know that he is loved, as loved as his brother and more, and that he is special, too.
 

Alphonse threw a tantrum last night, complete with hair pulling, hair twisting, and his patented maneuver, “yanking till the roots come *&#@ out.” I should have seen it coming. He’s been having some really bad days lately. He seems more on the edge, more antsy, more unsettled of late.  

I think it comes from not having a real rapport with his new teacher. Of course, Teacher J tries hard, but he seems to lack the ability to knock down Alphonse’s walls. I don’t know if time will ease the transition issues (Teacher J replaced Teacher P, Alphonse’s teacher for the last 10 months, only last December) or if it’s some flaw in their relationship that I can’t pin down yet. Let it pass, Lord.

I had to physically restrain Alphonse as he struggled to grab and pull my hair. He’s almost as tall as me, with a longer reach and really strong arms. We struggled for a while, but as soon as I wrapped his arms with a towel, he started to cry- a real heart wrenching cry that made me tear up, even as I struggled not to betray my emotions in front of him. I had to appear under control at all times.

When he started to calm down, I started to talk to him in hushed tones. He would nod or shake his head to answer me.

Does something hurt? No.

Are you angry? Yes.

Are you angry because I said No to you spilling the cooking oil? Yes.

Spilling the oil was wrong. Yes.

I love you. Yes.

Don’t pull my hair. Yes

Touch gently. Yes

Are you calm now? Yes.

I let him go after that. Slowly, he touched my hair tentatively and looked at me, as if waiting for me to react. He kissed me, softly, and I hugged my son, my big boy, my forever-baby.

So this morning, I am nursing some sore spots on my head. I rub them with ice and they don’t feel as tender as they did last night. These are the rough spots of our lives that make the smooth times feel even better. When you know how low your life can actually go, you learn to be grateful for the sunshine that comes after the storm.  

Got me some boo-boos; no biggie today. Nothing that a pint of Cherry Garcia can’t make all better.

I was in hurry to take a bath last night. I’d forgotten that A and I had a date to pick up some items from the store. I was writing an article when he called to say that he’d be home in less than 20 minutes. And was I ready?

I jumped from the bed, grabbed my towels, and made for the bath. I tossed my eyeglasses on the sink counter while my other hand made a lather with the shampoo. Between my poor eyesight and the bubbles in my hair, I could hardly see anything. I dunked my head in the tub of water a few times. On the last dunk, I caught something in my mouth.

It was squishy, mushy, and soaking wet. It crumbled in my lips and my tongue made an instinctive motion to flick it off, revulsion rising in my throat. As I cleared my eyes of shampoo, I saw it… them… lying at the bottom of the tub.

Nuggets.

Chicken nuggets.

Or more precisely, Alphonse’s chicken nuggets.

My revulsion turned to laughter.

I pieced together the mystery of the Bath Nuggets later. Apparently, Alphonse threw, or rather “buried,” his uneaten nuggets in the tub of water as he tried to evade his nanny’s repeated attempts to have him finish his snack. Teacher J had been leaving big portions of Alphonse’s morning snacks untouched and Alphonse was feeling the pressure to finish them off. Alphonse has a quirk when it comes to food: he cannot stand seeing leftovers; either he finishes them all (even the garnishings) or he throws them away. Anything for a clean container.

After his morning class, he quickly and deftly eluded his “surveillance team” (aka nanny), apparently made a quick dash to bathroom, and went back to his nanny a few seconds after she noticed he was missing from her side. He was also sporting a big grin. Nanny, sensing that Alphonse did or was going to do mischief, asked him: “Have you been a bad boy?”

He shook his head to say No, and laughed out loud.

Oh, well. If I had known the nuggets were there, I would have added some barbecue sauce.

~o~

I took Alphonse aside after the incident and tried to explain that what he did was wrong. This was our conversation.

Kittymama: Alphonse, please do not throw food into the bath water. Do you understand Mama?

Alphonse nods his head to say Yes.

Kittymama: Are you a bad boy?

He shakes his head to say No.

Kittymama: Will you throw food in the bath water again?

Alphonse pauses, thinks for a while, smiles sweetly, and nods Yes.

Kids.  Gotta love them.

My son brought home an A+ from his English poetry class yesterday and my heart swelled with pride and joy. I am glad that he loves the written word as much as his parents do, and even gladder that Ms. SLT (his English Teacher, whose name I will only disclose at the end of the school year) finds a way to inspire Alex and tap into his love for prose and poetry every single day.

By Alexander *

Two warriors do stand
On that barren hill
One protects, upholds
One slaughters and kills

Two warriors remain
Stalwart, unbroken
Silence complete
Words unspoken

Opposites they were
Opposites they are
Different from each other
Like moons and stars

One, Light,
Is good, kind
His kin, the Dark
A Shadow that Binds

Their armies are formed
Women and men
Weapons at ready
The Chaos descends

The battle echoes
Cries uneven
Sounding like that
Of Hell and Heaven

As they clash, fight
Duel, struggle
The ground breaks
The dirt buckles

Retainers, soldiers
Witches fall
Yet two men remain,
Standing tall.

Light and Dark
Destined to fight
Forever, an accursed
Blight

When Light falls, he
Must stand once more
And resist Sleep’s
Eternal call

Dark must not let up
Let the balance shake
Lest he be crushed
‘neath Light’s mighty wake

So two champions,
Light and dark
Fight still, forevermore
Solid and stark

On air that cries
Without a sound
On ground that weeps
With terror abound