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“Not The Mama”

7 Mar

When I brought out breakfast for the boys yesterday morning, Alphonse came up to me right away and kissed me. I was glad to see him looking happier than he had been of late, so, buoyed by the 3Es of the Son-Rise Program, I celebrated with whoops of joy and a silly dance.

Alphonse turned out to be amazingly responsive, using more vocalisations to respond to me. His “red light” moments were shorter, enabling me to sustain longer interactions with him.

While he was having his breakfast, I kept a running conversation with him. At one point, I asked him, “Did you have a good night’s sleep, Alphonse?” He responded with a loud “Yah” and a vigorous nod. I followed it up with “Did you have a good dream?” Alphonse roared “Yah!” again, smiling broadly and nodding his head in obvious agreement.

Of course, this Mama just had to ask: “Did you dream of Mama?”

Alphonse looked at me quizzically, then shouted a deafening “Eh! Eh!” He shook his head emphatically. An expression that can only be described as “ewww” 🤢 crossed his face fleetingly.

I laughed so hard I almost fell off my seat.

I wish I could have recorded the whole thing in video. When Alphonse opens himself up, he is quite the hilarious fellow.

Then again, do I give him nightmares? 🧐

Update:

Today, I asked him the same questions, and his replies were honestly consistent.

Me: Did you have a good night’s sleep, baby?

Alphonse: (shaking his head) Eh.

Me: Did you have good dreams?

Alphonse: (shaking his head again) Eh.

Me: Did you dream of Mama?

Alphonse: (nods sadly) Ya.

I do give him nightmares! This just cracks me up! 🤪

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Meet Juki

2 Mar

When I came home from Blythe Carnival Singapore last November, I couldn’t stop talking about one particular aspect of the whole experience- the sewing classes. I had been to BlytheCon Japan the year before but I missed out on some of the sewing classes, so for Blythe Carnival Singapore, I made sure to be there for almost all of them.

Admittedly, I am a novice when it comes to sewing, and I can pinpoint the particular moment (throwback: Sewing Frenzy) when I developed a fear of it. Faced with my idols, the sewing geniuses behind Momolita and MisukeToybox, however, I braved abject humiliation and signed up for the short classes under them.

Despite my clumsiness and inexperience, I managed to finish the projects they taught us. I learned how to make a kawaii cloth headband (with a dainty ribbon on top!- see topmost pic under Misuke Toybox‘s tutelage and itty-bitty little socks under Momolita‘s guidance (see pic below). It took me two tries on both projects to come up with decent enough output, but let me tell you that the feeling of accomplishment was so worth it! 😍

I did buy a few souvenir items at the Blythe Carnival, but mindful of wanton splurging, I made sure to keep within my budget. And yet, even as I calculated and re-calculated my purchases, there was one thing I really wanted to bring home (short of owning a custom from Umami Baby or PJdoll, which, at this point in time, is still a big dream, cross my fingers🤞)- the Juki TL2010Q. This was the machine they let us use for the convention workshops. It purred like a kitten under my hand, didn’t bite my fingers off, and was just about as idiot-proof for a “second-rate, trying hard” crafter like me could be. Alas! For about SGD1100, it was more than my budget could allow; moreover, I could not bring it home without paying additional baggage fees.

I must have kept talking about the Juki for a while after I got back, until I found something else to obsess upon (yes, still obsessing about a dream custom) and all talk of the Juki petered out into wistful nostalgia. I learned to re-love my old Singer, (I now call her Jenny Lind, for the late singer in “The Greatest Showman”), never mind that she clangs a whole lot when she bites upon cloth and jars the whole table when starting and stopping. And when she did finally stop working, I resolved to find a repairman for her and not ditch her for a new model.

Then today, I came upon my husband hauling this around. A Juki! Whee! Better yet, it’s the Juki TL2010Q upgraded and released late last year- the Juki TL2200QVP! I am in love. 😍

Today, I am already plotting the hours for when I get to spend some quality time with my Juki. I have ideas brewing at the back of my head, designs for doll fashions I hope I can conjure into reality. Heck, even if I fail, at least I don’t have to manually sew Alphonse’s shirts again. The Juki will see to that.

My grateful thanks to my ever supportive enabler, A❤️, for always listening to me, even if I do go on and on and on obsessively. Thank you for always believing that I can be whoever and whatever I want to be. Love you forever. ❤️

Hair-Trigger Meltdowns

27 Feb

We were four in the car last Sunday, on a short ride which Alphonse asked for. Shortly after one in the afternoon, Alphonse suddenly handed us a set of his clothes (a white shirt and a pair of green shorts) which he had taken- on his own, without prompting– from two different drawers of his dresser, asked for our help in putting them on, and then, willingly- with no delays or lags- boarded the back seat of our car. We were surprised. We hadn’t taken a car ride together in months as the last few times, back in late November, had been fraught with episodes of anxiety. We thought that day would finally be a welcome break to our every day routine.

Sometimes, however, in the excitement of a singular event that comes so rarely in our lives, we forget how difficult transitions can be for someone like Alphonse. Without prior notice, without warning, he falls apart with severe anxiety. Like that afternoon, in the car ride.

Before we left the house, we had told him we were going to buy food along the way. Was he okay with it? We asked a few times to make sure he understood, and he nodded happily in acquiescence. So far, so good, or so we thought. Seated together in the back passenger seats, Alphonse and I held hands in the car; he even pulled me in for a kiss a couple of times. Now and then, he would ask me to blow bubbles for him, which I did, and he flapped happily in his seat, making little squealing noises of joy.

The car ride started out so well that we let our guard down and became complacent. Then too, perhaps a part of me was tired of overthinking things, of always analyzing situations and preparing for them, that I just let things take their course. Sometimes, all I really need is an ordinary day.

But ordinary has never been a routine part of our lives and we all knew it. I should have anticipated that.

The problem started when his dad went down to order food for takeout and in his haste, he forgot to tell Alphonse where he was going and what he was going to do. Within seconds, Alphonse’s happy humming changed into growling. Before the warning had even registered in my brain, he had my head locked underneath one arm as the other hand pulled on my hair. Alex, who was sitting in the front passenger seat, jumped to the back to give me a hand. I cannot describe the anguish I felt at that moment, seeing my sons grapple with each other as Alex sought to hold on to his wildly flailing, kicking, scratching brother. It’s a heartbreak only a few of us will ever know, and no matter how many times it has happened in our lifetime, it is one thing I will never get used to.

I was able to break free with Alex’s help. I called for his dad to come back and as soon as A♥️ showed up, Alphonse began to settle down again. A few more minutes and he was mellow and smiling again.

I am trying hard to remember everything that happened so I can continue to identify the triggers of his anxiety and anger. It’s just that sometimes, it is too hard and too tiring. I close my eyes in the middle of this short reflection, willing myself to find quick answers, but I am drawing a blank. Every day is a roll of the dice, and yet we have no choice but to keep rolling.

It’s back to the playroom for now.

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! ❤️

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