Okasaneko
(http://blog.hellokitty.com/okasaneko)
A Tubby Tabby, Three Konekos, and a Life with Hello Kitty and Autism

Archive for November, 2007

Look-alikes

Thursday, November 29th, 2007

When Alphonse was small, people would remark on his uncanny resemblance to me. So close was the likeness that they dubbed him Ponky, a close approximation of my real nickname. Fortunately, the nickname didn’t stick. (It really sounded quite atrocious!)

On second thought, however, maybe it would’ve been better if it had, for then, Alphonse would not answer favorably to names like Malfoy, Folmoy, Folmonz, Fonzy, Totoy Bato (pronounced toh-toy bah-toh), Buguy (boo-gooy) and Buknoy (book-noy)! Talk about name confusion!

Like mother, like son

Alphonse in my baptismal dress.

Now that he’s a lot bigger, I hardly see the resemblance anymore. I think he looks more like his dad, and I am glad. (I happen to think my husband’s a stud! Hi, honey!) Still, there appears to be some disagreement with my own assessment. What do you think?

Alexander, on the other hand, started off life as a copy of his father. When the obstetrician who delivered him laid eyes on the scrawny, premature, fuzzy baby, he declared that the boy took after the father’s side of the family, and not mine. (The Ob-Gyne is my uncle and he was also the one who delivered me.)

Like father, like son

Papa and Baby Alex: notice the gleaming foreheads, the receding hairlines, and the arched eyebrows, with the almost identical pug stance

If you ask Alex today who he takes after in looks, he has a patented answer: “From the neck up, I look like Papa. From the neck down, Mama.” You’ve got to love smart-aleck answers!

Sorry to disappoint you, son. You didn’t get all your looks from your father. Looks like I get to have a say in the matter too.

From My Heart

Tuesday, November 27th, 2007

I wrote this for the Autism Society Philippines shortly after the National Conference. This was sent out as an email digest, one of ASP President Dang Koe’s enduring legacies (she brought the society to the modern ages!). I’ve written a lot of things in the last ten years or so, but this one is special to me.

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When you start a day with happy tears in your eyes, you know it’s bound to be a good day.

The last time I saw Vell Baria, she was but a gangly, petite preteen whose vocal cords could blow away the competition with her high notes and perfect pitch. At the ASP NC, I found out that she was no longer a child but a graceful, young woman whose voice only seemed to grow stronger with time.

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It’s funny how one single moment could affect the rest of your day, and for me, Vell’s song opened a floodgate of emotions — sadness, relief, happiness, gratitude — that reminded me only too well of our family’s journey with autism. When I looked around our table, I did not see a single dry eye. I didn’t feel too ashamed then to grab a tissue and dab my eyes.  

And this happened each time young men and women of various abilities (young people so close to my son’s age, it seemed) performed so enthusiastically on stage. All those who witnessed their heartfelt performances cheered and clapped and hooted with joy, yet at the same time, kept swallowing back their tears. Perhaps they were tears of pride, some tears of happiness, tinged with a little wistfulness, maybe even a little longing. But I could sense that there was no heartbreak, no envy, and certainly no despair. We all rejoiced at how far our children have come.

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I took a down a lot of notes during the lectures that ran one after the other. This, itself, was a breathless ride. To be faced with so many choices was exhilarating and I marveled at the wellspring of information that many parents can now access. Yet today, I have yet to look back at my notes, and maybe this will wait another day. Right now, I focus on the friendships I forged in those two short days, parents and teachers and professionals, all bent on one goal: to help our children with autism.

It’s amazing how one single thing in our life — autism — could unite so many people from so different walks of life. On those two days, it didn’t matter if you were rich, or poor, or married, or separated, or educated, or intelligent; there was only one ingredient necessary: Love.

I met a dedicated teacher from as far away as Cagayan de Oro willing to shell out money to follow Bimal Rai to Singapore for RDI. (Well, many of us wanted to go after Rai, for not entirely selfless reasons. Oops! I let the cat out of the bag! Rai now has groupies in the Philippines! Haha!)

I met a father from Davao who flew in all the way to meet with support group friends he has never met, except online.

I met a teacher from St. Joseph’s College, Teacher Jane, who struck me with her devotion to even the most behaviorally challenged of our children.

I met the very gracious mom of a handsome fourteen-year-old boy, and were these different times, we would have been a little shy to talk to each other, even if our children came from the same school.

I met prolific artist Gabby Atienza and had my son’s picture drawn. His portrait now occupies a special place in our living room.

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And then there was Gio’s proud father (and even prouder husband of ASP’s President Dang), he who stood by his son’s handmade frames and gave us a charming sales pitch, which only underscored his pride and his devotion to his family.

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I met all these people and more. And each one changed my life in immeasurable ways.

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From each I draw strength and courage and optimism to face good times, bad times and all in-between times. I hope they took away something from me too.
 

HOPE After Diagnosis

Monday, November 26th, 2007

First appeared in HerWord.com on 19 November 2007 

This article is an open letter to parents whose children are newly diagnosed with autism, with special mention of J and S, both moms from different circumstances and vastly different lifestyles, but united by a common interest: their very young sons with autism.

J I know only through an email forwarded to me which was posted in a forum for parents of children with autism. She is a stay-at-home mom of three kids. Her middle child is a four-year-old boy diagnosed with Autism Spectrum Disorder in March of this year. Her son has received sporadic therapy since diagnosis.

S is a recent acquaintance. I met this very accomplished woman through her husband, an old friend I lost touch with many years ago (try 15 years) and just ran into very recently. Her son is also four, diagnosed with PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified) last year, and has been receiving comprehensive early intervention since then.

I thought to write this for them, in the hopes that they might run into this in the wide world of the Internet, and imagine that I speak to them directly — one to one, heart to heart, mother to mother. (more…)

Mirror, mirror, on my blog…

Friday, November 23rd, 2007

Mirror, mirror…

I have created a new mirror site at http://okasaneko.wordpress.com/. While I will not be leaving my original “home,” I have made a new home in Wordpress for the following reasons:

a.) Hello Kitty needs a broader audience.

b.) My husband and son will feel a lot less uncomfortable with my new blog address as it omits any direct mention of Hello Kitty.

It’s a small price to pay for Hello Kitty peace in our Hello Kitty home.

(See how I intentionally inserted Hello Kitty at the oddest places?)

The Gratitude Attitude

Thursday, November 22nd, 2007

Love is… a brother.

Autism’s blessings in this family’s life:

            Understanding,

            Patience,            

            Tolerance,

            Aceptance,

            Selflessness,

            Love

Happy Thanksgiving, everyone! May you all be so blessed!

Giving Thanks

Thursday, November 22nd, 2007

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“Let us rise up and be thankful, for if we didn’t learn a lot today, at least we learned a little, and if we didn’t learn a little, at least we didn’t get sick, and if we got sick, at least we didn’t die; so, let us all be thankful.” - Buddha

Things To Be Grateful For

… for spoken I love you’s

My husband says “I love you” and means it every time. He whispers ”I love you” in my ear in the early mornings, texts me to remind me that he does, and ends all his phone calls to me with it. It is also the last thing I hear from him every night. (This, after 17 years of marriage!)

… for a son’s normal growth and maturity

My eldest son is a strapping young man of fourteen and he no longer holds my apron strings for comfort. It’s hard to let go of the image of my once-little boy with the Mickey Mouse voice. In my mind’s eye, he has barely aged since eight, so when I look at him, a few years short of being a man, I am always in awe of who he is today. 

… for my autistic son’s achievements

When Alphonse was asked today “Where is Mama?” he looked at me, smiled, and pointed a quivering finger at me. This may seem trivial to many, but to me, this is the pot of gold at the end of a rainbow.

… for my home,

messy and filled with clutter, (I really should get back to cleaning) but also filled with the sounds of life.

… for family and all that they bring into our lives

Thank you, Mom, Dad, and Daddy (my father-in-law) for your love and support. And Mommy F, I know you’re happy in heaven now, but I still miss you. To Jas and Joe, the crabby Darla’s of my life, my sisters and friends, thank you.

… for friends, old and new ones: 

my best-est friend in the whole wide world Anthony, my friends Cocok, Cynthia, Gaylie, Ondine, Leirs, Cris, Emi, Sally, Risa, Joville, Cecille,  and Carina

.… for God who remains merciful and loving always

I receive these with an open and grateful heart always.

Wanted: Indestructible Earphones

Monday, November 19th, 2007

I love music. I’ve been singing since I can remember and once, just once, in my young life, I was even offered a professional recording contract.  (Scout’s honor!) Unfortunately, being a minor then, I was not allowed to make my own decisions and my parents turned down that lucrative offer for me to step into the limelight. Still, a part of me can’t help but think…hmmm…what would have turned out different if I had?

Despite that minor glitch in my otherwise predictably orderly life, I continued to love music. And it’s no surprise that I found a husband who nurtured the same interest.  Truth to tell, my husband can do a mean rendition of Bryan Adams’ “Have You Ever Really Loved A Woman?” (The line “when you see your unborn children in her eyes, you know you really love a woman,” completely floors me. Such poetry in a song! But I digress…)  And it came as no surprise, too, that our offspring carried the same genetic predisposition for music. Alex, my firstborn, is a natural baritone, with a deep love for theater music, the opera, and a little of Taylor Hicks’ soul.

Silence began to fill the house when the little one came along.

Alphonse, even at infancy, was highly sensitive to sound. He could not tolerate loud music and he went bonkers when noise overwhelmed him. More often than not, he would cringe in fear and cover his ears when something particularly loud and offensive was within auditory range. When that wasn’t enough, he would go into a fullblown rampage, destroying everything within reach of his hands, wreaking havoc and chaos in our lives. When he was unreachable in his tantrums, we learned to quiet down and diminish our sounds. As the music and noise of ordinary life were turned down in our home, we found out, sadly, that the laughter died too.  Thankfully, over the years, we’ve been able to desensitize his hearing and slowly, the music has returned back into our lives.

Despite his limitations in communication, Alphonse can readily give feedback on what type of music he wants. Josh Groban’s first album, Josh Groban, was a shoo in. So too, Sheryl Crow’s Wildflower album. Andrea Bocelli’s Amore is a Yes. Sharon Cuneta’s Isn’t It Romantic is a Yes. We soon found out that easy listening songs are okay, but he readily grunts his dissent with rock music. His favorite yet? The soundtrack of Joseph, King of Dreams. This one never fails to soothe him.

Because of his sensory issues, we were afraid to let him come near his brother’s iPod or mine. We were afraid that the iPod would somehow channel sounds a little too forcefully on his sensory-excitable hearing. But having read one mom’s account of how her son was able to  deal with his sound hypersensitivity with an iPod , we crossed our fingers and for once, gladly let him use Alex’s old iPod nano. IT WORKED! (♥Thank you, Mom-NOS!♥)

Alphonse enjoying the iPod

Where Alphonse would shout and scream at the top of his lungs when the noise of our home overwhelms him (sometimes, just the drone of the vacuum or the blender is enough to unhinge him), we show him the iPod and in an instant, he quiets down, asks for the earphones (by pointing, so, remind me to make a PECS card of it)), slips them on, and smiles as the music fills his ears. He is a completely different child with the music that he loves.

Ah, but as usual, nothing is ever as easy as pie. Just this weekend, Alphonse was using the iPod while we were waiting for his father to come get us in the car. Alex wanted to lie down on Alphonse’s lap because he was drowsy with sleep. I cautioned him against doing that. Alex is sooo big compared to his younger brother: Alphonse might not appreciate the extra weight on his lap. As unpredictable as autism is, I can predict certain instances that are most likely to draw a negative reaction from Alphonse. Sure as the sun follows rain, Alphonse took a quick peek at his brother’s head on his lap, tousled big brother’s hair, exposed a bit of ear, and … nipped it.

No, he didn’t draw blood but it was enough to make Alex howl in pain and anger. Alphonse jerked back in surprise and indignation, his face registering a look of “what the heck is your problem, bro?” Alex continued to sputter in anger despite my admonitions for him to quiet down. And Alphonse, angered by his brother’s reaction, took the earphones off and ripped it in four pieces. (Picture only shows three; these were all I retrieved from the trash.) 

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Then, he smiled sweetly at me.

Oh, well. Guess we only have to look for indestructible earphones for the iPod now.

Christmas in November

Thursday, November 15th, 2007

My husband and I celebrated our anniversary yesterday. Counting the years we’ve known each other in childhood, the years we became best friends in high school and college, the years we were officially together as a couple, and the years we’ve been married, we’re a year past our “silver” anniversary. Not bad for best friends, really.

We celebrate many anniversaries. The first time he said “I love you.” (January) ♥

The first time I said “I love you.” (February) ♥

The first time we held hands. (March)♥

The first time we kissed. (May) ♥ 

The first time we got married. (September)♥

The second time we got married. (November)♥

Name it, we remember it! When I think about how we find a cause to celebrate almost every day of our lives together, I cannot help but be grateful for this sweet, loving, faithful man.

And to sweeten the icing, he gives me the best gifts ever!

I don’t mean to focus on material gifts alone, although he is an expert when it comes to things I need or want. He can almost sense them intuitively, even when I just need the most basic things like underwear  or lingerie (imagine a grown man buying his wife plus-size underwear and you know he’s one secure individual). More than this, however, he delights in buying me gadgets: cellular phones (this year’s gifts, see picture), digital planners, laptops, gaming consoles (Nintendo DS, PSP, Wii). Gadget geeks, we truly are.

Christmas In November

And while I treasure each and every gift he gives me, the best gifts I remember are those that involve little money and just a lot of love. Like the time he serenaded me with Josh Groban’s You’re Still You at six in the morning. Or the time he sang and recorded my favorite songs in a crowded recording kiosk at the mall, at the risk of humiliating himself in front of everyone listening. Still, one of the best gifts he has ever given me (and he has given me a LOT!) was a song, written in the beginning of our relationship.

Please don’t doubt you’re beautiful/ There’s springtime in your eyes/ Your every touch a poet’s line/ With love in every smile…

He sees my beauty, even when I am at my ugliest. He loves me, even with all my imperfections, flaws, and shortcomings.

With a friend, lover, and husband like him, who says you can’t have Christmas in November? 

Why We Must Persevere

Tuesday, November 13th, 2007

This was written two years ago in January 2005 and published first in HerWord.com. , when the incidence rate was in 1 in 500. Today, Alphonse is 13 years old, and autism strikes 1 in 150 children worldwide.

January is best remembered as Autism Consciousness Month, with a special week heralded to recognize autism in our lives. For many Filipino families, this week hardly merits any attention, but to families like mine, this is an opportune time to underscore our special advocacy.

When Autism Came (Alphonse at 18 months

When Alphonse was diagnosed with autism in 1996, the odds of having a child with Pervasive Developmental Disorder or PDD (the umbrella categorization for several related disabilities, of which autism is the most prominent) was one in 10,000. Alphonse is the first child in both our families to display overt signs of autism, though in hindsight, we could certainly pinpoint a few quirky relatives who displayed little or no social interaction with the rest of the clan. Understandably, his diagnosis came as a shock to us and to our families. (more…)

Hurricane In Our Hands

Tuesday, November 13th, 2007

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Posted December 20, 2004 at HerWord.com, this is an excerpt from A Blessing in Disguise, one of my favorite stories about my son Alphonse.

 Alphonse is proof that you can’t hold a hurricane in your hands. Why we never learn is something that surprises me, even after all these years.

December 7 was the much-awaited stage debut of our son. It was the first time in years that he would be part of something big and something as important as a school play. This was an important test of all the skills he has acquired and mastered this year.

We’ve never had Alphonse try out for anything like this before. We were afraid to push him and make him do more than he could because he can sense disappointment keenly. In a sense, we did not want him to rush and open his wings fully, lest he clip them on the rise and fall fast from the sky. We worried that his buoyant spirit might get hurt irreparably, just as we were afraid that having him near so many children could trigger an outburst or, worse, a regression.

Still, despite our initial reluctance, we bravely stood by and let his teachers teach him his parts for the play. For most Saturdays of the past two months, we accompanied him to the practice venues and watched hopefully as his teachers whisked him with his co-actors to perform their parts in secrecy. We were kept in the dark on what the play would be about. We knew very little about our son’s parts, save for the fact that he needed to be dressed up as a Roman soldier. Piecing together some clues along the way, we later added to our fount of knowledge. To our amusement, Alphonse was to portray the role of a Roman soldier during the time of Jesus.

My husband feigned protest, but he was more than too happy to see Alphonse in any role. He said if Alphonse was to be a Roman soldier, then he would make sure that his son was the best-dressed soldier in all of make-believe Jerusalem! Trooping to a fabrics market one bright and early Saturday morning, my husband and I went from stall to stall in search of the perfect materials. I had researched on the Internet days before and I designed a wearable, comfortable costume based on realistic and historical accounts of a Roman soldier’s dress.

Of course, we had to work within a budget, but by then, my husband was caught in anticipation of seeing his baby on stage. After a week of waiting, the costume was finally finished. As a final touch, I sewed a plastic replica of a breastplate and his nannies and I took turns teaching Alphonse how to hold a plastic sword and shield.

When the day of the play came, Alphonse seemed cooperative and took to his costume like fish to water. He whipped his cape in a Roman’s brisk march and tapped his knuckles on his breastplate to show his pride. When asked to pose for pictures, he repeatedly complied, even yelling in glee a few times.

Alas, it was too much to tempt fate. While Alphonse bore with the waiting amazingly, Murphy’s Law reminded us once again that if something can go wrong, it will. Add to that the maxim that if it’s too good to be true, it usually is, and we’re all set to end a winning streak. Just a scene short of his own entry into the world of entertainment, Alphonse threw a hissy fit. The waiting, the heat, the lights, the noise, and the hunger finally drove my son nuts.

Alphonse was bodily carried backstage while he howled and cried and implored to be let into the elevators. He tapped and pointed, tapped and pointed, and tapped and pointed yet again to the exit, his relentless character finally showing. And when we did not give in to his demands, all hell broke loose.

He was coaxed for one final scene, the scene where the forlorn Roman stands beside a crucified Christ, but he had already missed his moment of glory. In scene 13, Alphonse and his cohorts were to spar with the disciples of Jesus in the Garden of Gethsemane, a one-minute dueling scene. We had practiced this for weeks and, in a flash, the moment was gone. Alas, with our hearts broken and a distraught Alphonse peppering us with kisses to allow him to leave, we finally gave in to our little superstar.

The next day, the little imp woke bright and early and, leading me by the hand, brought me to his Roman soldier’s costume. He raised his arms as if asking to be dressed, and when I did, he ran away in a flurry of action, cape whirling in a frenzy of red, hands gripping tightly his plastic sword and shield. He looked so happy, and for a minute there, it almost seemed like he was a normal boy playing dress-up. I had to smile in spite of myself.

I guess, ultimately, what this teaches us as a family is to live for the moment and savor each as if it were the last. With Alphonse, we cannot plan too much and way ahead for even the best-laid plans can go awry. Perhaps, too, I’ve added a little nugget of wisdom to my aging years: that the hurricane in our hands can give us the whirl of a lifetime, if I just give it a chance.