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

Archive for the 'Parenting' Category

A Valentine for Autism

Wednesday, February 13th, 2008

Kitty’s Valentine for AutismWhenever 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.

Zombie Mom

Friday, February 1st, 2008

I’ve been averaging less than four hours sleep a night for a week now and my sleep cycle’s shot. Our air-conditioning is on the fritz and Alphonse has been waking up earlier and earlier each day. As soon as the air-conditioner ices up, he’s wide awake. The other day, he was up at quarter till five; today, we were running around the house at five thirty. As a result, I feel sleepy at the oddest hours of the day. Last night, I hadn’t realized that Alex was talking to me until he said “Mama, you look like a zombie” as I stared blank-faced at him. Hey, sometimes, I do feel like a zombie. :-(

To make things worse, I can’t go to sleep at night. After I put Alphonse to bed and I’ve made a quick check of Alex’s school work, I still have other things to do. Like picking up after the boys. Or packing away the books for the nth time. Or working on the PECS project. When I lay my head on the pillow, my eyes simply won’t shut. I lay there awake, thoughts turning in my head, until I decide to give up and do something else.

So, last night, I gave up all attempts at sleeping. I decided I have more productive uses for my time than to stay wide-eyed and staring at the ceiling. I surfed the net and bloghopped like a crazed Energizer bunny. And what do you know, you really do find the oddest assortments of information right at the tip of your fingers.  (I also found some really great blogs to add to my links, but that’s for another post.)

I chanced upon this unusual toy at Nerd ApprovedSuper Mom I think you would have to agree that this is definitely Mom Approved. If I had a daughter, I’d get her this doll right away. I think every little girl dreaming of motherhood in her future ought to spend some time playing with dolls like these, and not just the oh-so-cool Barbies that only get frazzled by bad hair days. If you don’t believe the toy is real, click here and see where you can get a Happy Worker Everyday Superhero Super Mom toy  for only $14.99!. If you visit the creator’s site, there are links for fun mom facts and an FAQ on mothering. Just imagine your eight-year-old rattling these facts: “Mom, by your grandson’s 2nd birthday, I’d have changed 7300 diapers! Neat!” or “Super Moms don’t need to sit!” Happy Worker, creator of these innovative dolls, also has a collection of men dolls called Geekman, Moneyman and Bossman. I think Super Mom looks good with Geekman, but then again, that’s just me, always a tad partial to geeky (but cute!) men.

Watch her change from calm to frrazzled in seconds! And yes, maybe they’ll come out with new variations of Super Mom. How about a Zombie Mom, one who’s not only frazzled but also sleep-deprived, with slathered glop on the face, and with puffy eyebags and deep furrows on her forehead. She’ll be still in her jammies and curlers at noon; she desperately wants to blog but just doesn’t have all the time in the world. The house is a mess. The baby needs his milk. Baby’s clothes are still drying in the living room. See the eyebags and the wrinkles! See her sexy panda pajamas! Oh, my, I see myself!

ZOMBIE MOM: She’ll scare the —- out of you!

Zombie Mom

Peace On Earth… Begins At Home

Tuesday, December 11th, 2007

Peace on earth begins at home.

This is for Megamom’s tag :To cane or not to cane?

“My son is severely autistic. I mince no words and tell people that up front. In the wide spectrum called Pervasive Developmental Disorder, my son is at the tail end of the most severely affected and severely limited group. Even now, eight and a half years after diagnosis, my son is, in many ways, still at the far end of the bell curve of normal — a little child trapped in his own world and in his own body. The label, however, is only that: a label. For despite his many disabilities, Alphonse is everything beautiful and hopeful and wondrous in this world.

“My son was violent for close to five years. For a little child no more than 50 pounds in weight, Alphonse had uncontrollable strength that could inflict a most terrible physical pain. He pulled my hair daily for almost three years, no matter how short I wore it. Clumps of hair wrenched violently from my scalp left me bruised for many months after. Many times, too, while he held me down by my hair, he would kick me repeatedly in the chest and abdomen. And when he clamped his little jaws firmly and solidly on my flesh, he tore away more than just flesh; he ripped open my heart.

“Today, I can look back at those times with renewed hope and wonder if all those moments of anguish were simply part of an extended nightmare. For once, I can even joke and laugh about all the times of pain. I can see with clarity the silver lining in the desperation of those months and years and I am all the more thankful that we lived through those trying times. Autism in our lives has brought us to hell and back again.”  ~ From “Getting Back the Laughter,” HerWord.com, 19 November 2004

My family and I know firsthand the horror of violence in our home. Late last year, just when we thought that we were over it, my son went on a rampage again. Living under the shadow of anger and pain is a nightmare. The lesson we’ve all learned from all those days and weeks and months and years is unanimously clear: violence is always unacceptable.

Long before marriage, my then-boyfriend-soon-to-be-husband and I agreed that corporal punishment would not be our form of discipline for our children. Truth to tell, our personal experiences completely defined our principles in parenting. I was never spanked or hurt as a child even when my more adventurous younger sister Joee or my two rambunctious brothers often got a swat in their behinds for misbehaving. (I was really a sweet pink girl! J) My husband, the eldest of three and the most precocious, was his mother’s favorite bongo drum. Years later, my mother-in-law would often express regret at having spanked her son, even when he turned out perfectly normal and adjusted. “There is no excuse for hitting in anger,” she would often say.

And we agree.  

There are many reasons NOT to beat or slap or swat or spank a child, just as there are many other ways to instill discipline with love. (For our eldest, we use positive reinforcement coupled with a token economy system; our youngest son thrives on positive reinforcement and extinction for more aggressive behaviors.) Ours is made even simpler by the circumstances we live in: having been on the receiving end of Alphonse’s anger, we know how pain feels firsthand. Why would we wish it intentionally on someone we love?

Just a couple of resources to look at :

Spare the Rod, Spare the Child at http://www.thenewhomemaker.com/node/697 

The Center for Effective Discipline http://www.stophitting.com/

Since I don’t have anyone to tag (except maybe Leirs, mare, a little help, please?), I leave it to readers to ponder on the question with the hope that they will find compassion in their hearts for the littlest and weakest of our society, our children.

Crossing The Game Divide

Thursday, December 6th, 2007

Animal Crossing Screen Shots- Kitty in Dogtowne 

I got my pink Nintendo DS Lite last year as an anniversary present. Bundled with the handheld console were games that my husband chose for me, among them Nintendogs and Animal Crossing Wild World. And just like my sleepless nights with my Sony PSP (black at first) a few months before that (I got the pink one for Valentine’s Day this year), the DS Lite became a new and consuming passion.

On Christmas Day last year, my eldest son got his own DS Lite, and soon after, on New Year’s Day, my husband got one for himself too. When summer vacation rolled by, it was time to test the wireless multiplayer ability of the DS Lite. When we were feeling frisky and playful, we played against each other in Mario Kart races that lasted for hours. (Alex always chose Bowser, his parents were always versions of Yoshi in different race karts.) Yet on some nights, as we played quietly together, we would visit each other in the Animal Crossing community I created, Dogtowne. There, I was Kitty, Alex was Alpha, and Papa was, well, the unimaginatively named, hmmm, Papa. We would trade fruits, give gifts, help dig fossils, visit friends, write letters, hit rocks, catch insects, plant trees– name it, we did it in our virtual world. Somehow, I could sense that Alex was happiest on those nights, when in our make-believe world, he was the sole center of our existence if only for a short time.

And this got me thinking last night, while reading through the Happy Blog. I wanted to share with you a story which was featured last month on the Happy Blog, but which was originally from a 2005 entry of a Korean weblog called Loliel the Black Onion Brigade. Here is the comic strip  from the Happy Blog but I’m also including links to the videos from Gametrailers.com and YouTube. (more…)

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…)

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

alphonse-knight.jpg

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.