Tag Archives: Herword.com

Self-Injury

25 Nov

head banging 02 copy

Originally published in HerWord.com on November 24, 2014, link here.

The first time it happened, Alphonse was barely two years old. Before that day, he had been a happy, if a little “distant,” toddler, and were it not for the diagnosis of classical autism a few months earlier, we could have happily gone on believing that the road to recovery would be a smooth and easy one. When you’re young and naive, I guess you can almost believe your own hype about being a supermom, the one who can fix anything, even autism.

That day, Alphonse was strapped to a hospital bed and tethered by an IV line. He had had an infection raging inside his lungs for days and forcing down oral and rectal medications had become a losing battle of wills. He screamed and shrieked like a howling banshee, only to withdraw and whimper pitifully when we touched him. He struggled and fought desperately, his eyes betraying that wounded animal look we would get to know so well over the years. But he was small, and just barely two, we had the edge when it came to strength and physical power. And so, I imagine, feeling helpless and wanting very much to escape, he did what his mind thought was the logical answer to his woes: he started to bang his head.

It started with one loud thud as the back of his head connected with the headboard of his hospital bed. We all turned around to look for the source of that alarming sound, and before we knew it, he had seized upon the idea of hitting his head with so much zeal that his eyeballs started rolling backwards in his head. We panicked.

The next few days became a whirlwind of anxious anticipation. Only one thing could happen at any one moment: he would hit his head on the walls or we would physically stop it. Most of the time, he won; he was that fast. The times we did, however, he started diving, head first, from the bed to the cold, hard floor. We hardly slept a wink then.

Self injury AlphonsePicture copy

That bruised cheek was the result of weeks of smashing his face- cheek first- against walls.

These self-injurious episodes would come and go over the years. The themes would vary- sometimes it would be head banging- hitting his head, face and ears against walls or his fists; other times it would be teeth-or cheek-bashing, the former the cause of his permanently chipped right incisor; or it would be scratching and gouging of his skin till he drew fresh blood. And although they were actually less common occurrences than the daily, gut-wrenching aggression we lived with for years, these episodes were so severe that it was, in fact, easier to bear with violence directed towards us than to see him beat himself repeatedly.

It is estimated that roughly a third of all individuals with autism and severe intellectual disabilities exhibit varying degrees and types of self-injurious behavior or SIB. The causes of this behavior may differ from person to person, but it is telling that this affects the more severely affected individuals in greater proportion than those who are able to function better socially and cognitively. This most devastating behavior is responsible for limiting the individual’s access to the world around him as the potential consequences include not only permanent injury or death, but isolation from the community, as well.

I write this today as we deal with the aftermath of his current self-injurious phase. After weeks of hitting his head, his right ear is swollen and infected. There is blood pooling in his outer ear, stretching it taut and deforming it. The doctor diagnosed it as perichondritis, an inflammation of the cartilage in the ear and a complication of perichondrial (ear cartilage) hematoma. Laymen know it as boxer’s ear or cauliflower ear and the condition is seen in prizefighters of wrestling, boxing, and full-contact body sports. While it is regarded as a badge of courage for these sportsmen, for individuals with autism and other developmental disabilities, it is a chilling reminder of the difficulties they face as they try to adjust and thrive in the world the rest of us live in.

Behaviorists teach us that behavior always has an antecedent and a consequence. When I reflect upon all the changes our family has been through these past months, I can understand how this particular behavior reappeared after years of being controlled. That these all started when my dad passed away is particularly significant in its proximity to the onset of these events. Then, our house was in shambles from my parents’ move and our routines were scuttled by the long, necessary days at the hospital and, thereafter, the funeral home. Even today, as we struggle to find normalcy in our post-Daddy lives, what we were before July has become vastly different from what and who we are now. Alphonse must be hurting and grieving, too, and unable to express these, he lashes at himself, perhaps to relieve his sorrow, perhaps to vent his rage. Moreover, it didn’t help our cause when his teacher of more than a year left to pursue other employment opportunities last month, leaving him feeling abandoned and more bereft in his sorrow.

Any change in our environment, family dynamics, schedules and routines can provoke a reaction, we know this only too well. Often, we are able to head off emotional distress successfully and he turns back into his happy self. Regrettably, this is one of those times when we have failed to protect him completely.

We’ve taken all necessary precautions for his protection as we work to redirect his self-injuring energy. Padded cushions of foam mats have been placed on the walls at (his) head level. Where he sits at the dinner table, a plastic corrugated board is duct taped at the edges of the table and glass top to prevent the sharp edges from cutting into his skin. (He has already sustained a laceration on his forehead from hitting it on this edge.) Comforters and other thick beddings cover hard spaces he could get into. Additional foam mats are mounted and spread all over the house- in the bathroom, in the kitchen, in the bedroom- all designed to give him a safer space to move in. Unfortunately, despite our best efforts, we still cannot protect him from his own fists, and this is an egregious failing that continues to nag at our conscience.

It is extremely difficult to be calm when your child intentionally hurts himself. Still, in these many years, we have learned that it is best not to panic. In truth, we have only succeeded in masking our pain with a seemingly confident assurance that all will be well in the end. Left to our own thoughts late at night, we sublimate our sorrows, busy ourselves brainstorming more ways to keep him safe, and then get back to the real hard work of doing so.

Under “normal” circumstances, the treatment for his ear is simple and can be routinely done even in a doctor’s office. But given his history of aggression, his unusual strength, extraordinary reactions to stress and change, and aversion to medical treatment, this simple procedure of draining the ear will have to be done in an operating room and under general anesthesia. I wish we could spare him of all these troubles, but the option to continue conservative management has been lost. There is nothing else to be done but to stop him from inflicting more damage to himself.

Despite all these setbacks, we are confident we can hurdle these latest lows in our autism roller-coaster life. Although we have lost the sense of peace we value so much in our home, what we have in abundance balances this loss: the determination and vigilance to keep him safe at all costs. With your prayers, dear friends, we will overcome.

We did it before; we can do it again.

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The Wanderers

25 May

The original piece was posted in HerWord.com on May 24, 2013.

My son, Alphonse, is a wanderer. He has always been one, even as a wee toddler. We never take our eyes off him, not for one second, and not if we can help it.Running copy

We hold his hands wherever he goes because we know that if we didn’t, he’d bolt and run. When he goes for walks in the familiar surroundings of our neighborhood, he may not be tethered or held, but he is always flanked by his brother, his teacher, and the nannies. It’s the only way we know he will be safe.

Even now that he is almost grown, it’s a behavior that has posed great difficulties for us. In the past, there have been times when he would suddenly wake up in the middle of the night, jump off the bed and run, even before we’ve had a chance to rub the sleep off our eyes. Slide bolts on doors used to do the trick before he learned how to open them. These days, we are all expert light sleepers. A little movement, a little fidget, a groan, and we all wake up. Nothing short of willful and cautious anticipation will suffice. When he is with us, we are always, always alert.

Yet, for all our precaution, there was one time when Alphonse still managed to slip away from us, unnoticed. He was barely in his teens then. One afternoon, I left him in the garage to play with his nanny. I went upstairs for a bit- I don’t exactly remember for what- but I know that I wasn’t away long. When I went down to check up on him, I found the nanny deep in conversation on her cellular phone and Alphonse nowhere in sight. That was when I noticed the open gate.

You know those movies where they transition into action scenes using very slow motion? That is exactly how I felt that day; I felt my life running on freeze frames. I screamed at the top of my lungs, grabbed the nanny’s hand, and dragged her outside to run after Alphonse. For those brief seconds when Alphonse was lost, I swear I could not breathe. My lungs seized up inside me as I felt my heart hammering in my throat.

I scanned the road quickly and within seconds, I found Alphonse in a small huddle of curious kids. He was still in our street, almost naked except for a pair of flimsy boxer shorts. He didn’t even have his slippers on. Somehow, he had taken off most of his clothes and left them by the gate and the nanny hadn’t even noticed. He stood in front of a neighbor’s sari-sari store, looking at the packets of food they had on sale. He had a small bag of chips in his hand already.

I hugged and kissed Alphonse, apologized to the store owner and paid, and led him back home. From then on, my husband and I made sure everyone in our household stayed vigilant. We made sure the doors were always locked, alarms were set, and all points of exit were secured. Whenever we went through a change of nannies, this was one lesson we never failed to repeat over and over again.

I recall a similar incident that has stayed at the back of my mind all these years. Five or six years ago, the 13-year-old son of a friend’s friend, also with ASD (Autism Spectrum Disorder/s), was able to leave his house in the south of the metro undetected. He was found five days after he disappeared but his adventure was simply baffling. No one knows for sure where he went, where he spent the first night, what he ate, or if he ate at all. Like many children with autism, this boy also had difficulties in communication.

What was apparent, however, based on events pieced together by his parents, was that on the second afternoon, he boarded a bus that headed farther south to Laguna and Cavite. As the bus ended its route late evening, the conductor finally noticed him. It was fortunate that the conductor was a kindly man who noticed that the boy was “different.” On the bus’ return to the city, the conductor handed him over to a friend. This friend then took the boy the next day to the local office of the Department of Social Welfare and Development (DSWD). From the third to the fifth day, the child was in the custody of the DSWD but the lack of a coordinated, systematic computerized network among the different offices of the DSWD slowed the parents’ search for the son. When he was reunited with his distraught parents, he was none the worse for wear.

walkingWe were lucky, but surely, not many are. Last year in the local news, an 18-year-old man with autism wandered into a neighbor’s house and was mistaken for a burglar. When they physically accosted him, the young man, as expected, fought back. They tied him up and beat him. By the time another neighbor alerted the mother to her son’s whereabouts, he was bloodied and wounded. Had she been late, perhaps, her son would have been beaten to death, as he continued to fight those who held him down. I know that reaction only too well.

Wandering or elopement is a huge problem across the spectrum of autism. In a study published by the journal Pediatrics in October 2012, 49% of the respondents in this online survey reported that “their child with an ASD had attempted to elope at least once after age 4 years.” This is in contrast to data gathered from families with neurotypical children that reported only 11% of typically developing children wandered.

Of those missing, 24% or almost a quarter were in danger of drowning while 65% were jeopardized by pedestrian accidents. The more severe the autism, the greater was the risk of elopement. The study also called for interventions to reduce the risks of this behavior, to support families with this issue, and train professionals handling the rescue and recovery of these children.

Sadly, all these will come too late for some parents. Just this past week, three children with autism, Owen Black, 7, Mikaela Lynch, 9, and Drew Howell, 2, drowned in separate incidents after wandering away from their homes. Their families are devastated and we can only pray that they find some comfort in the love and support of those around them. In difficult moments like these, there is no blame to cast or judgment to be made, only a sad, cautious tale to be told over and over and over again.

The Box

15 Feb

This Valentine’s Day story appeared on HerWord.com yesterday, February 14, 2013.

She pulled out a box from beneath the bed. It was old and a not a little dusty. The corners were bent where the box had squeezed in with the other things hidden beneath their bed. A floppy ear of a torn stuffed doll was caught in a hinge, and she smiled wryly, remembering the hours she had spent looking for that miserable piece of fluff.

She took out the box once a year, in February. It was as much as a habit as a ritual, and old habits die hard. She heaved the box on top of their bed and felt the sudden weight bear down on her shoulders. The box, it seemed, was weighted down with memories.

She had kept the box under the bed on the fifth year of their marriage. She liked having it near. Liked knowing where it was. In the early years, she opened it regularly, sometimes, to read, often, just to look at it. In recent years, as the box got moved and shuffled in the netherworld called the underbed, she had simply looked at it from time to time, just to reassure herself that it was still there. “My precious,” she whispered to herself in Gollum’s voice. True, she thought, after all these years, this box was still most precious to her.

She opened the box and lifted an old card on top. It was yellow with age, the paper fragile and crackling. She looked at the little brown bear doing cartwheels and thought back to the time when she first held it at fourteen. The words, written in black ink with a careful script, made her smile. “How young we were then,” she murmured.

She took out more cards and more paper, folded in various sizes and shapes. The bear doing cartwheels soon found company in a monkey hanging from a tree, and then later joined by Ziggy and Garfield, icons of the eighties. She sorted in rapid succession, looking for something, holding her breath. A few seconds later, she found it.

A plain white card—given on the sixth year and the only one of its kind in a box of youthful, if sometimes cheesy, mementos—emerged from beneath the pile of childish cartoons. As she opened it, she was struck by the dedication written solemnly in careful script and signed with a flourish. She stared at those three little words, as if mesmerized.  How easy it was, back then, to decide on a course of fate and gamble their hearts upon it. Was it courage or foolhardiness that pushed them to a then-unknown future? She shook her head in quiet disbelief.

Time, it seemed, was kind to them, even as it ushered them forward to assume new roles in their changing lives. Classmate, best friend, confidante. Lover, spouse, parent,  partner. From a friendship forged early by similar passions, theirs became a love that deepened with a shared history and with respect for the journey their lives had taken together. Over the years, their two became four, and four formed a family. Their family.

She counted the cards and letters, all sent on February 14s of each year, from the bear in cartwheels to the last one, a letter penned in the middle of the night. There were 31 of them now. One for each year of their friendship, their relationship, and their marriage. Each one told a different story, of a different time and a different place. The pictures and styles changed with time, with age, and with need. But even 31 years apart, the cartwheeling bear and the letter both told the same story. The sentiment remained the same.

Each and every Valentine, she held his heart in her hands. And for as long as they  lived, it was hers to keep, he promised. The paper may age, it may yellow and fade and crumble, but for as long as a February 14 rolled around each year, he would renew his promise and keep his faith in the three little words that changed both their lives.

As the day ended, she took the newest card, read it again, and gently laid it on top of the pile. She straightened the bent corners of the box and smoothed out the edges. Gently, she closed it and whispered a silent prayer of thanks. She would keep his heart forever. It was a promise she held on to with the very breath of her life.

“Forever and a day,” he wrote, “forever my Valentine.”

~0~

And this man, my friends, has been my Valentine date for 31 years.

Two tayo forever 31 and forever. 🙂

 

 

Eyes of the World

13 Aug

My first article for HerWord.com since I left over a year ago. It feels good to be back home. 🙂

I was doing groceries early yesterday morning, trying to finish everything before the lunch crowd came to the mall. I remember I was in the shampoo and soap aisle, holding on to a nine-pack of pink Safeguard, when I started hearing screams, growls, and wailing. Everyone rushed to where the sounds were coming from. Everyone… but me.

I knew right away what it was. I’ve seen and heard it probably a million times before. The sounds of a meltdown—worse, a meltdown in public—were all too obvious. I took my time with the soap, trying to decide on the scent and color, trivial details, of course. I just didn’t want to be where everyone was and be part of the staring, the ogling, the whispering. I’ve seen those looks before. I knew them all.

When I got back to the cashier check-out counter, I knew I was right. There were people watching, holding their breaths, as if waiting for the next scene in a movie. Many just didn’t know what to do and stared dumbfounded. But a few had the look I hated most—the look of disdain in their faces. You can almost read their thoughts there and then. Of how autism had rudely interrupted their lives and they were annoyed at the momentary distraction. Of how the child was holding up the line, making a scene. And how the parents were pathetic fools who did not know how to control and discipline their child. It’s funny how easy it is to read aversion in the faces of men. Nothing can mask hate.

My husband gave me a lowdown on what had happened. He had been at the checkout line before me when I had run to get the soap. The boy, probably ten years old, had something taken away from him- food, my husband thought—and he was disconsolate at the loss. The boy had his mom and several other adults with him.

“Do they need our help?” I asked my husband.

“No,” he said. “His mom’s a pro. Look at how calm she is. She’s got it under control.”

I smiled and whispered again, “Now, if we can only get all these people to stop staring. I hate it when the same thing happens to us.”

“They just don’t know what autism is. They’re probably curious too, you know,” he said kindly.

I have to admire my husband’s compassion for those who cannot summon the same for children with autism. He’s always been an idealist. I used to be one too, but these days, I think of myself as a realist. A pragmatist. And as much as I continue to hope and pray for a future of acceptance for my son with autism, I have given up holding my breath for it to happen soon.

Once in your lifetime, you will come across a mom or a dad struggling with a child in full meltdown mode. If and when you do, please, please do not stare. If you would like to help, approach the parent and, in a gentle voice, ask if there is anything you can do to help. Many times, that parent will decline your offer of help. We autism parents are often like that. We don’t want to bother anyone else with our problems; we bend over backwards to make accommodations that others will not do for us. Offer it again anyway. If he or she accepts, then help with an open heart. If he or she says no, then stand back and move away, but leave a parting word of encouragement, if you can.

If you must look and keep a watchful eye, do so with this thought in mind: that what looks like a wild, undisciplined child may be a child in pain and his/her parents are doing all they can to help him/her. They need help and understanding, not judgment and scorn.

They say it takes a village to raise a child. I say it takes the whole world to raise a child with autism. Please stop staring and be part of the world.

Now 16, Forever Sweet

3 Nov

Today, Alphonse turns sixteen.

It never ceases to amaze me when I look at him, now almost grown up. He stands three inches taller than me, fits into men’s clothing, and sports a slightly disheveled moustache which matches the smattering of hair in his armpits. Everywhere I look, I no longer see a trace of the baby or the child he once was. All I see is a man.

The truth is, I miss my baby. I miss the sweetness of his breath in the morning. I miss the softness of his unblemished skin. I miss being able to carry  him in the crook of my arm to sing him to sleep.

 I miss the way he fits in the side of my body when he curls up in bed with me.

I miss his chubby cheeks and his round, heavy body. I miss the hibernating porkchop and his pouty lips.

I miss his childlike smile, the one that erases all my fears away. 

But even as I miss those mementoes of his childhood, I marvel at who he has become today. Almost a man, but not quite. Loud, quirky, opinionated, determined. Headstrong and bullish. Sweet and trusting. 

It has been a long journey from then to now. There were many days of pain and heartache, and of grief and despair, but for each one of those miserable days, our lives were blessed a millionfold by what we have learned living with and loving him. Alphonse has taught us patience and tolerance, forgiveness and acceptance, gratitude and surrender. Most of all, he has taught us how to love without hope or thought of reciprocity. We love him because we do, and not because of anything he does to make us love him. It’s as simple as that.

Happy birthday, our dear sweet child, our Alphonse.  Papa, Mama, and Kuya Alex love you so much.

~0~

While on the subject of birthday celebrations, this blog also turns a year older this month. Happy 3rd birthday to Okasaneko Chronicles!

In 2007, when I started blogging, I was lucky to get even just ten people a day to read my blog. Three years later, despite the lack of promotion (I’ve never really been very big at that) and the freedom to express myself, those numbers have multiplied exponentially. In this little corner of the Internet I call Kittymama’s home, I have made many friends. I have also become part of a larger community of people I would never have met were it not for this wonderful experience. Thank you to all those who have come, visited, read, lingered, commented, returned, or even just glanced at the pages of my life. I am humbled by your kindness and love.

The Okasaneko Chronicles’ 3rd Blog Birthday Giveaway starts today so please be sure to leave a comment in this blog post to join. You can read the mechanics here for the full details on the giveaway. Many, many thanks to all those who have helped make this giveaway a reality: Sanrio Gift Gate Philippines, Ban Kee Trading, Inc., BusinessWorld/HerWord.com, Autism Society Philippines, The Fairy Godmother, and Alphie (who is none other than Alphonse, the birthday boy who wishes to share his birthday blessings with his Mama).

 

Herword is Our Word

29 Oct

Today, I am featuring the gift sent in by Ms. Judith S. Juntilla, my editor at HerWord.com, and Ms. Melody Bonus, the site’s webmistress, and it’s a beauty!

CH Carolina Herrera eau de toilette 1.7 fl.oz (50 ml) natural spray 

I’m not a big perfume person (I live on Philosophy’s Baby Grace and Amazing Grace, with the occasional spritz of Clinique Happy or Estee Lauder Pleasures Exotic) so I feel totally unqualified to review this. Instead, I will let the experts speak their mind to you:

The new Carolina Herrera perfume is floral, with a fresh start and an oriental finish. The composition is opened with fresh notes of bergamot, orange, grapefruit and a juicy melon. In the sweet heart there are Bulgarian rose, jasmine and praline. Cinnamon, woody notes and leather lock the composition down. (source: www.frantica.com)

Carolina Herrera CH features bergamot, orange, pomelo, melon, rose, jasmine, praline and cinnamon over woody base notes. (source: www.nstperfume.com)

I don’t know about you guys but I am just about sold on this. Were this not sealed new in cellophane, I’d be tempted to take a whiff or two and let my senses soar with the pleasure of a deeply luscious scent. Moreover, I love the aesthetics of this bottle. Deep red, in leather and metal, this bottle plays upon the imagination as well.

CH is expressed in leather, metal and intense red. A fusion between classic tradition and contemporary innovation, the fantasy and romanticism (source: www.carolinaherrera.com)

There’s a great review of this scent on the net and you can find it here. Check it out if you want to know more.

I am deeply grateful to HerWord.com for their support. As a voice of the Filipina woman, HerWord.com has advocated for the Filipina’s many roles in society. HerWord.com is also my home, where my writings have reached an audience of similar interests and passions.

If you want to win this beauty, be sure to come back for the 3rd OC Blog Birthday Giveaway! Five more days before it starts! 

Countdown to November

26 Oct

As November approaches, Alphonse senses something special is coming up and acts giddy and excited. It doesn’t hurt that another long break is overdue, what with the All Saints’ Day/All Souls’ Day holidays coinciding with most schools’ semestral break. Despite Alphonse’s lack of knowledge and concern about dates, he gets a lot of cues from the people around him and instinctively anticipates the coming days.

I can’t help but feel giddy as well. The OC (short for Okasaneko Chronicles, but funny how it simply dawned on me now that another form of OC is perfectly apt for me- obssessive compulsive, heehee) 3rd Blog Birthday Giveaways will be starting on November 3  and all the people I’ve asked for support has responded very favorably. Even HerWord.com, BusinessWorld’s e-zine for women, is sending a gift for giveaway! Yippee!  The mechanics will be up very soon so please watch out this week for more news on the giveaway.

To get Alphonse prepped for his birthday road trip, we started him on short trips again. His behavior looks very promising. He has been very well behaved on our short trips and save for some minor shouting (he does love his verbal stims), there have been no major problems with grabbing or running away. Two weeks ago, at the grocery store, Alphonse wanted to ride the shopping cart the way he used to when he was a small child. I can’t help but smile when I remember how he took off his size 8 shoes and tried to lift one leg to put inside the large shopping cart. He’s almost five feet five inches now so the sight of him inside one can’t be considered cute anymore. Good thing he’s very pliable these days and we were able to convince him to walk with us instead.

Yesterday was another holiday because of the local barangay elections. Taking advantage of another free day, we decided to start Alphonse’s day with a visit to Granny Flower’s ossuary (Granny Flower is A’s mom).

Then it was off to  my Mom and Dad’s house for a visit. We didn’t stay too long, though. We wanted to give him an hour or two at the mall before it was overrun with people.  We also wanted to tire him out by walking the stretch of the SM North EDSA Sky Garden’s 400-meter covered walk way.

Alphonse was met with a lot of curious stares as his dad and big brother held his hands while walking. He didn’t seem to mind the gawking; in fact, he had a ready smile for everyone he crossed paths with.

He fell in love with this overgrown pumpkin decoration and sat down and fiddled with it before we could entice him to walk again. He even laid down a few seconds on the grass right beside it.

But we made sure to keep our promise of afternoon merienda (snack). Food is always a highlight of any trip for him and he loves Ineng’s succulent pork barbecue on a stick. He had one while sitting, another one while walking back to the car, and a third one inside the car. When we got home, he ate two more! This boy can definitely eat!

It doesn’t take much to make him happy, as you can see.  We didn’t even have to spend for anything other than food. At yet, at the end of the day,  you can tell by his smiles and kisses that he absolutely loves these mini-dates. Here’s crossing our fingers he’ll love our birthday surprise for him!