Help-less, not Helpless

16 Feb

It’s Friday morning; one more day and another busy week will come to a close. I look forward to the weekends, as many of us do. It’s when I get a couple more hours of shuteye without interruption, when I don’t have to wake up too early to get a jumpstart on a long day. On weekends, we usually get breakfast to go for the kids and that, by itself, feels like a rewarding treat after a long, hard week. Compared to weekdays, weekends are not as stressful, although they can be just as physically taxing. The time when we spent Sunday mornings in bed doing nothing is a time long gone.

We’re surviving these help-less seasons in our household strongly, something no one would ever have thought possible in a household with autism. In a country where domestic help is legal and available, our family is one of the few who have decided to do things our way. In this case, everyone pitches in and everyone pulls his or her own weight. Not even Alphonse is exempted. Of course, we’re dead tired at night but the house is clean (somewhat, haha), our bellies are full, and Alphonse is almost always happy. That, by itself, is already big change.

When I injured my neck in 2009, I had a lot of difficulty moving my upper extremities. Back then, I couldn’t lift my arms, my hands were thick and numb, and my neck stayed uncomfortably bent for months. I couldn’t do a lot of things that I used to do. I was suddenly very dependent on others to help me with activities of daily living. My husband took care of me when he was at home but when he was at work, we needed more help around the house, people who would care not just for Alphonse but for me as well. Thankfully, my neck got gradually better over a two-year period and I was able to take over some of my previous chores again.

The nannies stayed because Alphonse fell in love with them. They became his lifelines to the world and having just lived through my “limited participation” in his life, we didn’t want to take away any of his emotional and physical security blankets.

In time, however, they all said goodbye to make new lives for themselves. We looked for replacements to help with Alphonse but none worked out. We went through a succession of people before we finally decided to quit the cycle. By then, we noticed the emotional toil this revolving door of nannies left on Alphonse. He was, in turns, self-injurious and highly aggressive, unable to trust anyone, not even us.

In the many months since then, we’ve overhauled how our household works, splitting chores among the three of us and assigning simple tasks to Alphonse (mostly clean up scut work and removing laundry from the laundry wash line). Over time, we also reestablished a new relationship with Alphonse. Today, Alphonse is thriving under our care. He is expressing himself more, and for a nonverbal fellow who is used to using his burly brawn to get his way, it is quite a feat. We haven’t had to use the wrap/restraint his previous caregivers employed for meltdowns (knock on wood) and I think that’s because he feels more secure with us around him. He knows we are always here for him. We don’t put him off for a cellphone call or Facebook. We kiss him more, hug him more, and just love him more.

Lest you think I make it sound so easy, allow me to disabuse you of any rose-colored notion. Being without help isn’t so bad really; any full-grown adult should be able to fend for himself. But when autism gets thrown into the mix, it becomes quite a different thing altogether. Think about having an overgrown man-child constantly needing you, demanding one-on-one time, requiring 24/7 supervision, and think about how one can only do so much in a day and within limits, and you can maybe scratch the surface of what we live with autism.

The truth is, most nights, we are dead on our feet and running on empty. Some nights, even rest isn’t possible as Alphonse occasionally finds sleep elusive. These are the moments that test our patience and strength. When most everyone would be willing to throw in the towel and give up, we draw on our rediscovered sense of unity to help each other get through one more night. And one more day. And maybe just another night again. And so on and so forth.

I guess it’s true. You never really know how strong you are unless you are tested and pushed to your limits. And knowing that, I don’t think we can ever call ourselves helpless again.

Alphonse says hello! ❤️

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His Superpower is Jumping

13 Jan

One of them, anyway. (The other is making water dance!)

Alphonse started jumping even before he could walk. With our hands on his sweaty little armpits, he would bounce and jump for hours till he was tired and ready for bed. It wasn’t all uncommon for him to bounce when held up and this skill evolved into jumping independently by his first birthday.

As he grew older, jumping became his second favorite physical activity (playing with water was the first) and over the years, he has worn out our spring beds, not to mention countless trampolines. Having learned our lesson and refusing to make King Coil any richer, we did away with springs and changed our bed foams to US rubber. The trampolines — well, we didn’t have any real choice on that.

Now that he is adult-sized and heavy to boot, even the largest personal trampoline available in local sports stores gets broken within weeks. We were not only spending money so often for his trampolines; we were also wasting time and energy looking for sports stores that still carried the largest sizes. Only our suking bote-diyaryo guy was ecstatic at the number of trampoline frames and broken springs we were giving him.

Yesterday, we got Alphonse a new trampoline. Finally! He hasn’t had one in months and he has grown fat around the belly from not getting enough exercise. We were afraid he would not like it. Thankfully, he took to it like fish in water. In fact, he loves it so much that he said yes to making a short video! I was so impressed that he even got dressed for it when he is almost always in his birthday suit at home.

See that nice little smile he has? 😊

I’m so glad Bubi Trampolines went on sale. Thank you, Bubi Trampolines, for the great product, as well as your home service and delivery. Special mention to Mr. Jonel Sumbillo for answering all my inquiries and to Mr. Fer John Nicolas for delivering and assembling the trampoline here at home.

P. S. His Mama is his spotter, dancing and jumping like crazy beside him. 3Es, yeah!

P.P.S. This is not a paid post. We paid for the trampoline at listed price.

❤️P

To A❤️

30 Dec

Every year, as the minutes and seconds wind down toward the end of December, we find ourselves with renewed anticipation for the waning days of the year. While Christmas passes sedately in an autism household that does not care much for- or cope with- rowdy and frenzied celebrations, this enthusiasm breathes new life into our holiday merrymaking. This eagerness, however, is not for New Year’s Eve, which will not be for another 24 hours. And certainly not for the first of the New Year, which is a day we all seem to both await and dread. For me and my family, the 30th carries far more weight than any other day of the holiday season, and with good reason. On the 30th of December, we celebrate A❤️’s birthday.

This is one of my favorite pictures of my husband. 😍

I met A❤️ when I was 14 (he was 13) at the Philippine Science High School. We weren’t classmates right away, just two freshies thrown together for a debate team. He was six inches shorter than me, and skinny to boot, with hair always slick wet from Vitalis. Not my type, for sure. 😜 Lest you start to feel sorry for him, though, allow me to state that the feeling was completely mutual. We became good friends, true, and somewhere down the line, we would become best friends, but we never saw each other as anything more than that for years.

We grew up together in the warm, nurturing environment of Pisay, where we were both free to become the geeks and nerds of our dreams. Talk was one thing we had in common. He and I would spend hours freely talking about anything and everything we thought of, and friend that he truly was, he allowed me to hog the conversations most of the time. He bore with me patiently, never mind that he once described me in my junior year slam book as loquacious and voluble, a kindness when I think of it, especially when he could have simply have said I talked too much. Even when he and I went to different colleges, we bridged our friendship with snail mail and calls he made on the pay phone at Bellarmine Hall.

On his 19th birthday, he finally noticed I was a girl. Maybe the chocolate cake I brought to his birthday party did the trick. Maybe it was that single “happy birthday” kiss on his cheek. I don’t know why or how it happened, but having just come back from an extended stay in the United States, he said he woke up one day feeling like he couldn’t breathe without me. Thirty one years later, he says he still feels the same way.

And this is why when the 30th of December rolls around, I am reminded of the greatest gifts the Lord has ever given me- the gifts of undying friendship and unconditional love. This man has seen me at my worst, at my ugliest, and at my fattest, and yet he loves me all the same, cellulite, stretch marks, wrinkles, and all. He has stood by me through our difficult days, leading by example and with such faith and trust in the Lord that I myself did not possess. His is the hand that has pulled me many times from the brink of despair and the edge of sorrow. Today, many years after that day he first told me he loved me, he continues to show me what the meaning of true love is. I only have to look in his eyes to see.

Happy birthday, A❤️, my love, my best friend. I love you so.

Journeys

19 Dec

I came home on Sunday afternoon, rejuvenated, refreshed, and with a newfound sense of purpose, from the Son-Rise Program Start Up, the very first in the Philippines. For the five days I was away from my family, I learned new things, made fast friends, and gained a whole community of support. Over a hundred parents participated in this life-changing program, each one with a different, yet completely relatable, autism journey of his/ her own. In those five days, we learned to shift our mindsets to a new paradigm, forever altering the way we see our interactions with our children in the autism spectrum.

With Ron K. Kaufman

On our last morning, before we all said goodbye to each other, we wrote letters to our children- letters of affirmation, of commitment, of love- and some bravely shared theirs with us. It took all I had not to dissolve into a blabbering, whimpering crybaby as one father said “I would go to hell and back for you.” I still get teary-eyed when I think about it.

Last night, as I said my bedtime prayers after another long day with Alphonse (yes, it’s him and me again!), it struck me how apt and how perfect that line was. Alphonse was reticent and distant the whole day, ignoring me most determinedly. My absence had hurt him, and I knew he was not going to let me back in his life without an apology, which I gave, repeatedly. No dice. He also wasn’t feeling well and a sudden tummy ache turned into a “poo-nami” (think tsunami, but poo😳) at dinner time. While he writhed in what I can only assume to be colicky pain, he threw our dinner to the floor and spilled everything within reach of his hands. Then, he looked at us expectantly, waiting for our reaction. While I silently perused the scene of devastation, A❤️ kept his composure and reached out for Alphonse’s hand. Alphonse took it. My husband helped him get cleaned up, but Alphonse had several more poo-nami episodes that didn’t reach the bathroom just in time. A❤️ patiently washed our son, deftly steering him away from the remains of food and waste on the floor.

It wasn’t the homecoming I expected. After being away, I wanted Alphonse to run to me and act like he missed me. He did kiss and hug me once sincerely, but he moved away just as quickly, eyeing me suspiciously from the corner of his eye. I was hurt, truth to tell, and disappointed, but as my husband talked to Alphonse in a low, soothing voice, I saw in him the lessons I picked up from my time with Son-Rise and, like him, drew strength from love. Even after Alphonse was clean and had drank oral rehydration salts thrice, A❤️ had to scrub a whole section of the house for an hour before it was clean. We had to move furniture to make sure little bits and pieces of our dinner weren’t left for mice to feast on. He scrubbed the floor with bleach and soap and water to remove all traces of poo and I mopped up after him. I laundered the stained chair covers and table mats in one cycle and hang them up to dry. Later, I headed to the kitchen for my hour of washing up and A❤️ followed to help with the rest of our chores.

I realized this is what it means to “go to hell and back for you.” Because every single day, we do. And we do it without complaints, without begrudging him anything, and with much joy and enthusiasm, because we love Alphonse.

Before I finally fell asleep, I remembered something else. I’ve been meaning to write about this picture but a fog had settled in my brain. Anyway, I was sorting the photographs in my camera roll a few nights before I left home last week when my eyes wandered over a particular picture. It was one my husband took while we were in Taipei two weeks before that. It was part of a series of similar pictures- same pose, same squinty smile, same background- and were it not for the figures on the right side of the photograph, this particular photograph would have ended in the deleted pile along with ten others. For some reason, my eyes lingered on those two figures and stayed there.

I drew on my recollection of that day to place them in the picture. On that cold morning, as A❤️ and I ambled along while taking photographs, I didn’t even know that the camera had caught them. What I do remember most was the sound of a male voice mumbling slowly in a monotone behind me as an older female voice talked soothingly and calmly. I remember whirling around to catch a glimpse of where the voices came from. I remember seeing an adult man and an older woman holding hands as she gently led him across the wide main road, talking him through it. I remember thinking that anywhere in the world, a parent loves his/her child with special needs, and this love, while most unique and exceptional, can also be quite common.

Take A❤️, for example. Or the old Chinese woman with her adult son. Or even the father who choked back his tears while reading his letter to his son.

“I would go to hell and back for you.”

Yes, we Will.

Yes, we Do

Fat Woman Changing

10 Dec

Three things happened to me in the year I turned 50.

One, I lost all our temporary help in the household. Which turned out to be a blessing in disguise despite the many difficulties it presented, but that is another story for another day.

Two, I lost my hair. For some reason, my hair started falling out in clumps early this year. I was losing so much hair every single day I decided to have my locks cut off into a shorter style. For the first time in a long while, I have above-the-shoulder length hair. I miss my long hair, but I love the ease and comfort of this new wash-and-wear style.

Three, I lost my “body.” Rewrite that to say I lost some heft, emphasis on some and not all of it yet. This is the story of how that came to be.

In February of this year, I got a complete medical check-up courtesy of my HMO. My husband had to make the appointments for me and he badgered me to keep them. The truth was, I was a little hesitant because I knew I had gained even more weight since my last physical. Also, I hate weigh-ins with a passion. I dodged my doctor’s receptionist every time she called me in for a weigh-in. I would run to the bathroom and hide until my turn at the clinic came up. Then too, at the back of my mind, I was worried that there would be some significant changes in my state of health as I had been experiencing more and more health issues of late.

As expected, some of the results came back on the wrong side of normal. Moreover, I was surprised to find that I had tipped the scales at an all-time high. I had to slyly convince the nurse to shave off 3 kilos from my listed weight by claiming that my jeans, oversized shirt, sweater, and thick socks made up those excess 3 kilos. I was fooling myself, of course, because the weighing scale at home (which I had deftly kicked out of sight under my son’s bed) confirmed this astonishing figure. I guess when you’re with a roomful of people ogling at the weighing scale, your dignity takes a dive when the scales tell you you’re the fattest person in the room and everyone knows it.

So there. I am fat. I’ve always been fat. Even when I wasn’t at my heaviest, I was still bigger and fatter than most girls- and boys- my age. When I was younger, I dieted and exercised myself to injury, losing big patches of my hair due to nutritional deficiency and hurting my back for more than year from over-exertion. I never stayed thin for long, though, and the weight rebounded fast and furiously. It didn’t help that in my youth, the boys I liked all preferred me to be thinner. I starved for one boy, literally, eating nothing but lettuce for weeks. He dumped me later for a thin girl. (What a jerk, right?) Another young man I really liked told me “you have everything I want in a girl, except that you’re fat.” That one, he broke my heart.

When A❤️ came along, he didn’t care whether I was fat or thin. He loved me the way I was, period. The pounds piled on more each year, yet it didn’t seem to faze him. With his encouragement, I learned to love myself the way I was, to be comfortable in my own skin and fat, and accept that I could never ever fit into society’s norms of thinness.

Everything in excess, however, takes its toll, and up till a certain weight, I was still active and healthy. The problem began last year when I began getting sicker and weaker. I caught a bug that evolved into a nasty pneumonia. I developed asthma, with painful bouts of air hunger. My knees ached all the time; my back hurt like crazy. My blood sugar hovered precariously in the prediabetic range. My blood pressure seesawed dangerously. I knew it was time to take control of my life again.

I didn’t want to announce this lest I jinx my progress. Besides, I’ve talked about losing weight so many times over the years that I was afraid people would not believe me anymore. Talk about feeling like the boy who cried wolf. Also, to talk about it would be to commit to it with finality and I wasn’t so sure I was ready to commit to it in the early days. Now, I am.

So here I am, telling you and everyone else who’d care to listen that I have lost 21 kilos in the last few months. That’s 46.2 pounds in the English Imperial system. I wore sizes 24 to 26 in the plus size section three months ago, now I fit into a pair of size 18 jeans. Whoa! I haven’t fit in a size 18 in 14 years!

I am still fat, true, and I have quite a way to go. But knowing what I know now- that I can be healthy and “thin” by changing my mindset and way of eating- I am pretty confident that the next time I step on the scales and people ogle at my numbers, I would no longer get that urge to burrow my head in the sand. I look back at that day in February, thinking of how I invented all kinds of excuses to justify my weight- perhaps my shoes were too heavy?– and I smile at the memory. My husband bought me a new weighing scale recently and I have it front and center in the living room. We’ve gotten quite close, really, and I no longer kick it under the couch. 😜

Here’s to this fat woman, and may she never tire of changing.

One (Wo)Man’s Trash…

9 Dec

Is another (wo)man’s treasure.

I’ve been meaning to get a new case for my phone but I was too stingy to spend for one. I saw some really nice ones in Taipei just recently, but with the peso at a low, it just didn’t seem to make sense to spend for non-necessities right now.

So I made this.

Trash- packaging of Hello Kitty shampoo- turned into treasure- an upcycled iPhone case. What could be cooler than recycling?

Mom on the Run

3 Jul

These days, our household’s daily schedule is very regimented, revolving largely around Alphonse’s schedule. Everything is a function of his needs- food, toileting, medications, therapy. I can speak for all of us, my husband and eldest son included, when I say that our personal needs have taken a backseat to his. It’s certainly difficult but we’re not complaining; it’s just the way it needs to be.

Once in a while, however, we allow each other the time to de-stress and relax. Take for example the time two weeks ago when Alex took charge of Alphonse so that my husband and I can catch a late showing of “Wonder Woman.” We must have been one of the last ones in the city to catch the movie (I had read all the reviews by then), but it still turned out to be a great, if harried, date. Or how about last weekend, when my husband gave me an hour of nap time and cared for Alphonse while Alex was with friends? Despite the lack of extra manpower to aid us, our household continues to function because we all try to give more than, if not as much as, we take, each one of us mindful of the others’ needs. 

Now, one of the things I wanted to do for my birthday last month was to go to the salon for a pampering. Unfortunately, long hours at the salon are now impossible to fit in our schedule, so we had to improvise on an alternative. Instead of getting the full service at the salon, which would not only be time consuming but expensive as well, I split the process  into easier, more manageable, and less costly steps. This way, I don’t stay too far and too long from Alphonse, and I save a few bucks in the process.

I’ve been going to the same hairdresser for the last 20 years, and Rose of David’s Salon SM North EDSA Annex is an expert when it comes to cutting my hair the way I like it. Thus, the hair cut is nonnegotiable and would have to be done by Rose, no ifs or buts. As for hair color, since I like DIYs and I’ve been doing my own color for years, I decided to find an easy alternative.

For those who want a quick, no-frills, affordable hair color service, I discovered that nothing beats the “free application with purchase” service. In the Northern mall landscape, Landmark TriNoma offers this regularly, as opposed to other malls with limited time promotions. It has even provided a dedicated area called The Lounge for patrons who may want to avail of the service, with personnel trained and employed by the hair color companies manning the section.


The only requirement to avail of the service is that the hair color (Revlon at P394.75, for example) must be purchased on the same day as the service. Patrons must keep their receipt and submit it for registration. They are also required to sign a short waiver form stating they have used the product previously and have done a skin test. 

Yes, this is me, with three months of gray hair !


The Lounge can accommodate 5 clients at once and usually, there are enough personnel to keep the line moving. There is a small seating area beside it for clients waiting for their turn. Those who don’t like sitting idly while waiting can go around the mall to shop (as I did, shamelessly, with a black plastic cap on my head) or move to the adjacent nail salon for a manicure or pedicure. 



So how was the service? The color application was good, almost professional even, and for the cost of a bottle of color, well-worth the hour I spent at The Lounge. The attending service personnel definitely eased and hastened the process, especially as a perpetually stiff neck has made it difficult for me to reach the back of my head for an even application. 

A week later, also on a Sunday, I got to finish the process with a visit to my favorite hairdresser. I made sure to come as soon as the mall opened to be first in line, and I was done in no time at all. I’m only sorry I didn’t have enough time to enjoy the other services at the salon. A manicure and pedicure would have been heavenly, as also a hair treatment. Still, just a decent cut is enough to make one feel refreshed and rejuvenated, and that is how I always end up feeling after  Rose does her magic on my mane. The picture speaks for itself- doesn’t my hair look movie star worthy? 

This is what they call “talikod-genic!”


Moms on the run do not always have the luxury of time, but we do deserve pampering. That this is done affordably, with minimal time and effort away from children who need us, made these experiences well worth the effort. Will I be doing this again? Definitely. A great big thumbs up to this!