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

Archive for the 'Autism' Category

When It Rains, It Pours

Tuesday, April 1st, 2008

a WALL of Awards (wow!)

I love awards as much as the next person, and I certainly welcome any and all awards/ badges that may come my way. This humongous award comes from Teacher Julie and I am astounded at the sheer size of it all. (Thank you! Thank you!)

To top it all, I haven’t gotten around to posting this giant award when she decided to send more love my way via this:

More awards

Oh, my, I feel truly blessed! (Not to mention spoiled!) I do have an issue with the Sexy Blogger Award, not that I mind being called “sexy” (as they say, being sexy is all a state of the mind). May I change it to Hefty Blogger Award, just this once, for me? The latter definitely rings truer. :-) Whenever I hear the word “sexy,” I am reminded of six-year-old Alex’s retort when I asked him why he didn’t used the word to describe me in his essay. “But Mama, that would be a lie!” Yeah, kid, way to suck up to Mom. (Haha!) 

Okay back to the award.

As much as I love receiving these wonderful awards and badges, I can think of no better use for them than to share them and spread the love around. I love all the sites I’ve listed in my blogroll, but I do have some “staples”- places where I can be found hanging out, lurking, loitering, or simply visiting any time of the day. I am drawn to them because they speak of a theme which, despite the thousands of miles among us, unite us: Autism. 

Today being the first day in Worldwide Autism Awareness Month, I am dedicating this to: Susan Senator, Beth of Fragile What?, Bud’s Mom at Mom-NOS, Kim of Mommyhood, Casdok of Mother of ShrekBabs of Awalkabout’s Weblog, Maddy of Whitterer on Autism, Leirs of Mushings, and Cris of Eclectic Journals. These moms are my lifelines in the often confusing world of parenting a child with autism.

So to you, my dear friends, I dedicate these gifts of the heart. In a world often struggling with strife and intolerance, you live with more complex challenges than “normal” families do but you do it with so much aplomb, dignity, and love. I have learned so much from all of you about understanding, acceptance, and tolerance. Your eloquence, empathy, and support make me hopeful that a better world can be created for all our children.

You are my heroes.

Light Bulb Moment

Monday, March 3rd, 2008

Kitty Light Bulb MomentIt rained heavily today, and Alphonse, seeing the opportunity to play in the downpour, was all worked up and excited. From my sickbed, I could hear him yelling in joy, his shouts becoming increasingly shrill as the rain splashed even louder against the roof. As soon as his class was over, he didn’t even bother to look for me in the bedroom or kitchen (as is his daily practice); he simply ran off outside. I could hear his whoops and screeches and laughter from upstairs.

A few minutes later, it dawned on me that he might not be adequately dressed to play in the rain. And I was right. He had taken off all his clothes and was running around in his birthday suit. (Thank God for high fences!) His arms were stretched to the heavens, and he was twirling, spinning, and jumping in joyful abandon. Were I oblivious to who he is, I would’ve said he was a ballet dancer dancing in the rain (ehrm, make that a naked ballet dancer), so graceful and so rhythmic were his movements. :-) He had his eyes closed and a beautiful smile lit up his rain-drenched face. 

He seemed so happy that I felt compelled to run up to him and give him a kiss.

As I drew nearer, however, I suddenly noticed a perceptible change in his expression. He looked at me with a puzzled face, the small knit of his eyebrows erasing any trace of the smile a few seconds before. As soon as I was within range, he plucked my eyeglasses off my face and paused. I held my breath, trying not to hyperventilate. (Inside, however, my mind was screaming, “No, not again!” but I didn’t want to do anything abrupt that might upset him.)

He looked at the  little droplets of water running over the lenses, and the knit turned into a frown, as if remembering something horrible or disturbing from the past. His hands gripped the frame harder, twisting them slightly.

I felt time stop as a light bulb went on in my head. Suddenly, it occurred to me that  something about my glasses — some minuscule change in them — made him unsettled or angry or frustrated.

The water. Yes, the droplets of water running over them — that was the common theme.

The last time he mangled my lenses, I was helping him bathe and I could remember that my glasses were a little wet from his splashing around in the bath. He seemed puzzled and somewhat repulsed, as far as I can tell, from the beads of water on my lenses. I had related this episode to his anxiety over the changes in his daily routine, but what if it was an add-on source of discomfort to an otherwise already uncomfortable day? What if these two were unrelated?

Alphonse has always loved water. He could make a fountain of water dance magically in the air with just two fingers and the slightest change in pressure between them. He could sit on a large basin filled with water for hours (if we let him) and pour and splash and do all sorts of things with it with his hands. But when water strikes a glass pane, as in rain pouring down windows, he would track the beads of water as they dropped and, seeing them disappear in the thin gutter between the window and the pane, would often whine irritably. Was this the same thing?Alphonse and the Hose

I am sooo a dunce! Why didn’t I see this before?

I was silently berating myself over this when as suddenly as he had taken my glasses, he simply handed them back to me without a sound, my eyeglasses bent but none the worse for wear. Perhaps the rains made him a little more forgiving and less anxious, I really couldn’t tell.

Then he was off again, arms stretched out like the wings of an airplane, flying in a whirl of water, dancing in the rain.

Optical Ill-s

Wednesday, February 27th, 2008

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.

Broken EyeglassSince 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. 

“Nano Nano”

Thursday, February 21st, 2008

Mork And MindyNo, 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.

Kitty Ds Cases


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.)Belkin USB Laptop Cooler

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

Pink Nano 3rd gen

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.A Mini and Two Nanos

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?

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.

Walk for Autism, Walk for Alphonse (Part II)

Monday, January 21st, 2008

Walk T-shirt

This is the design of the shirt I will be wearing for the Autism Walk on Sunday, courtesy of my Photoshop tutor and expert, youngest sister Jasmine.

I had two shirts made for Alex and myself last Saturday night at Fax Parcel ‘N Print (FPNP) at SM City North Edsa. When I went inside the shop at The Block, there were three employees there that early evening- a woman and two men. I wanted to wait for the printing but the employee  at the shop said that it’ll take a while so I might as well pick it up the next day. It was just past six in the evening and the mall doesn’t close till nine, but I thought they’d work better without me hovering over them.

I was wrong.

When I picked up my shirts the next day, not only were they improperly printed (misaligned and smudgy), the shirts had stains at the back. And to think that those were new shirts I bought that very same day inside the mall (because they didn’t have shirts in my size).

I didn’t really want to complain. Normally, I don’t like to make a fuss and make myself an object of attention. I am a patient person and I can excuse almost anything, even horribly poor service, if the persons involved are apologetic. I was peeved, however, when one of the employees (who was there both Saturday and Sunday) simply shrugged it off and said “Ganyan po talaga“ (”That’s how it really is.”) to seemingly excuse his co-employee’s sloppy work. 

The fellow who worked on my shirts wasn’t there that day; neither was the female clerk. There was just this one man from Saturday night who kept an impassive, disinterested face and gave me that crappy remark which made me only angrier. The others in the shop were employees who worked only on Sundays, I think.

One of them, sensing my increasing irritation, apologized and decided to make a call to someone, I don’t exactly know who. The result was that he printed two extra shirts to give to me, as ordered by the person he spoke with on the phone. I accepted the shirts and I thanked the man for his concern. Yes, I will continue to do business with FPNP, if only for their gesture of peace; nevertheless, I am wary about doing business with them on a Saturday, when that sloppy employee takes his turn at the t-shirt press again.

I had the same pattern printed at another shop inside the mall. ArtRock is more expensive (PhP400 to FPNP’s PhP250 per t-shirt) but the workmanship is precise and clean. Besides, the employees are also very accommodating and polite.

Alex will have to wear one of the stained shirts (the new shirts don’t fit) because I don’t know when I’ll have the time to go back to the mall this week. I hope the chilly weather stays till Sunday; that way he can cover up the stains with a hoodie.

By the way, here are my sister’s original designs for the t-shirts.

  twodesigns-copy.jpg

Autism Walk Updates

Monday, January 21st, 2008

This just in my inbox- the schedule of the Angels Walk for Autism of the Autism Society Philippines.

 6:00 am     Registration (till 7:00 am)
6:15 am     Warm-Up Exercise
7:00 am     Mass
7:45 am     Opening Ceremonies
8:00 am     Walk
9:00 am     Program: Special NUmbers by Extra Special Kids

Here are some tips to help you and your family prepare for the walk.

a. Orient family members on safety tips. Prepare an assembly spot where everyone can meet and congregate or return to, when lost. Prepare schedule and synchronize watches.
Make sure everyone can be reached by cellular phone, if necessary.

b. Orient Child with Autism of the Walk schedule. Do all of the above, but make sure it is in visual form (words or pictures) that the child can carry to remind himself/herself.

c. Prepare food and drinks (lots of water!)

d. Bring caps or visors.

e. Bring extra clothes and towels.

f. Use sunblock. Very important!

Happy Walking!

Meltdown Ala Mode

Friday, January 18th, 2008

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.

Cure for meltdown (Rx to mom)   

Walk for Autism, Walk for Alphonse

Monday, January 14th, 2008

Walk for Autism

I got this Autism Society Philippines invitation to the Angels Walk for Autism on the 27th of this month. I missed last year’s walk and I am determined to be part of this year’s autism advocacy programs. The next quest: designing a “walk for…” t-shirt with Alphonse in mind.

Bathing with Nuggets

Friday, January 11th, 2008

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.

Bathing with nuggets

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.