Baby’s Vax Day Out

We signed up Alphonse and Alex to our local government’s vaccination program, QC Vax Easy, last month and to the home vaccination program of our barangay three weeks ago. At around the same time, I was also able to submit their names for home vaccination to the co-chair of our city’s vaccination program. To cover all our bases, we signed them up to the vaccine registries of other cities that allowed nonresidents to apply for drive-thru vaccination. We were fully aware that the supply of vaccines was limited, but we were also hopeful that because they belong to the A3 priority group (people with comorbidities), their names would be called up soon.

Nonetheless, my brother-in-law John, a surgeon working in the frontlines, kept us abreast of schedules and venues of forthcoming vaccination drives. Short of the home vaccination program, we felt that a drive-thru vaccination was the only other feasible option. Alphonse cannot wear a mask longer than a few minutes, and even then, that would be stretching his patience thin. He also has a hard time dealing with crowds and is almost always likely to have a meltdown in public. Given these, we followed the news and announcements from the city governments, from our barangay, and from my brother-in-law. When a local vaccination drive nearby opened up, John hurriedly signed up the boys to reserve their slots.

~0~

On our way to the vaccination site

Well, today was V-day. Vax Day! Alphonse woke up without complaints this morning. At 7am, he was dressed and ready for the day. We promised him a Jollibee or McDonald’s breakfast after his “tenteki”* and he nodded his head in agreement.

Alphonse was happy and excited on the way to the vaccination site. This was his first car ride in a year, and he was so thrilled that he kissed me a few times on my face shield. He held my hand throughout the drive, humming happily. We arrived at the vax site at 7:45am; we actually got there ahead of John, who texted that he was a little behind but he was on his way.

He seemed happy enough while waiting in the car. Outside the multipurpose hall, we could see people coming and going, setting up for the day’s activities. He seemed unconcerned at first, giggling happily and demanding for the Nips chocolate bits he found in my bag. John came at 8, right on the dot. When Alphonse saw his dad lower the window to wave at John, he stopped to look at his uncle. His face darkened a bit, probably remembering all the times this particular “Ninong Doctor” (Ninong is godfather in Filipino) had “tortured” him during home check-ups and wound debridement sessions that came after. Alphonse has such a long memory for hurt that he carries his “grudge” for a long time. Still, I was able to distract Alphonse with more Nips and his dark mood dissipated. I was even able to coax him to wear a mask, a few seconds at a time, which he tried to take off hurriedly, because, you know, Nips.

After Anthony filled in the registration forms, John motioned for us to drive the car inside the hall. There, he and the nurse took Alex’s BP and temperature. When they tried to do the same with Alphonse, that started a lot of groaning and screeching. Temperature check was easy; the vaccinators had an infrared thermometer. But we couldn’t get Alphonse to cooperate for the sphygmomanometer or even the pulse oximeter because he got so worked up. He didn’t want to be touched, didn’t want the vaccinators anywhere near him, and struggled against them. After a few minutes of back and forth and trying, the Vax staff gave up, and we heaved a sigh of relief. At that point, I felt they could have just asked us to sign a waiver for Alphonse. Even during hospital stays, the only way Alphonse’s vital signs can be taken is when he is knocked out cold by anesthesia. Awake, he would struggle and fight till he injured himself or hurt others.

When it was time for the actual vaccination, Alex received his dose first. I saw Alphonse stop and peek at his brother’s arm, his eyes widening in alarm. When Alphonse saw the needle beside his door, he started screeching loudly and kicking his legs against the back of the front seat. I couldn’t get him to sit still and when his dad and brother intervened, he fought them off. In the struggle, Alphonse had to be restrained manually by the strongest member of the family- Alex.

His body wrapped in his brother’s arms, with Anthony holding his right arm and me holding the other, Alphonse was able to receive his vaccine. He didn’t even flinch or make a sound when the needle went in. To him, the anticipation, aggravated by the departure to his daily routine, was worse than the actual event, which was over very quickly and with negligible pain.

We were handed their vaccination cards right away. Alphonse was still agitated then, his eyes alert and distrustful. When John said his goodbye, Alphonse gave him evil side glances. He isn’t likely to forget today, and we kidded John that he has become a marked man, hehe.

On the way home, Alphonse continued to be anxious and flustered. He ripped off the adhesive bandage the nurse left on his upper arm, shredded it into pieces, and swallowed a few small bits before I could stop him. He only brightened up considerably when we drove up to the fast food restaurant’s drive-thru. As soon as our orders were handed to us, he tapped his brother’s shoulder and begged for his share of the food. We drove straight home after that short stop.

As soon as we got home, both boys discarded their clothing to a waiting soapy wash, got bathed, brushed their teeth, and finally got their breakfast meals. The whole process took just a little more than an hour, but certain parts of it felt much longer. Like so many of our family’s life events, today turned out to be another rollercoaster ride- exciting, exhilarating, and also a lot scary.

Now that I’ve had the day to gather my thoughts, there were some things that I wish I could have improved upon:

1. Home vaccination would still have been the best option for Alphonse. In the struggle to restrain him, Alex dropped his face shield and lost his mask. It would have been easier to restrain Alphonse at home. BUT with the threat of Delta, we wanted to do it at the earliest possible time, and given the opportunity that was presented, this was a lot better than other available options.

2. Despite our attempts to teach Alphonse to mask up, his sensitivities have made it difficult for him to get used to wearing this. Note that this is a person who has never worn a hat or a hoodie in his entire life, who hated having his hair brushed or his face washed, and who only got used to haircuts when he was already in his teens. As a general rule, we usually check out locations and procedures in advance so we can anticipate his reactions and work on preparing him. This was the reason his dad and I received the vaccine ahead, using the drive-thru option available in EZ Consult. Alas, when this option was discontinued, we struggled to find kinder options for him. Persons with autism, in particular, would benefit from longer prep time and advanced notice so they can manage their fears and anxiety.

3. It’s been repeated over and over again by doctors of the Philippine Heart Association and the Philippine Society of Hypertension that blood pressure screening isn’t necessary to receiving the vaccine, but for some reason, this has remained part of the vaccine administration protocol. I wish there was a waiver for people for whom this procedure is next to impossible to perform. I was able to make Alphonse wear a mask for short periods of time, but when he became agitated with the BP screening, he ripped his masks repeatedly.

3. Because Alphonse is scared of doctors and nurses, I feel like for the next dose, the vaccine syringe and needle should be hidden from his view. We should still put him in some form of a support hold, just to be sure, but removing his fear would definitely make the whole process move faster.

4. We should have asked someone else on site to take a picture for posterity. Because we were all hands on deck this morning, we weren’t able to take a picture of Alphonse receiving his vaccine. On second thought, it wouldn’t be a good picture because we were all over him. Still, the picture would have made a good argument for home vaccination. It is extremely difficult to perform any medical procedure on severely disabled individuals like Alphonse. As such, I pray that the local governments take this into consideration in their vaccination programs.

Despite the difficulties, my family and I are extremely grateful for today. We are grateful for the sacrifice our health care workers continue to make and the hard work our local government officials pour into making our every day lives work in this pandemic. As a promise, we will continue to exercise every precaution to keep us, our family, and everyone around us safe. We will mask up, shelter at home, keep ourselves healthy, and encourage friends and family to get vaccinated. It’s the least we can do to help end this pandemic.

Stay safe, friends! Peace and love to you all always.

Keep “Moo-ing”

The cats, Nanay and KiTwo, have been providing us with afternoon entertainment these days. They’re always jumping on each other’s backs, nipping each other, or cuddling together. Most of the time, Alphonse ignores them. But once in a while, I catch him looking at them, and it becomes an opportunity to engage him in a conversation.

Case in point:

Mama: Are you a boy, Alphonse?

Alphonse shakes his head. “No.”

I see him looking at the cats from the corner of his eye so I ask a follow-up question.

Mama: Are you a cat?

Alphonse nods.”Yes.”

Mama: Can you say “meow?”

Alphonse: Moooooo

Mama: You’re a cow, not a cat! 😂

Alphonse starts laughing.

With quarantine still in place, some days are still hard for Alphonse. But once in a while, they can also be silly fun. Keep mooing, Alphonse!

Thankful

“Gratitude turns what we have into enough.” ~Melody Beattie

A life with autism was not something we wanted for our son or for our family. When my husband and I were newly married, we prayed for children- daughters, to be exact- and we asked for healthy, bouncy baby girls.

Our first child was a son, born six and a half weeks early, and he was a cute little boy with a lightbulb-shaped head and a button nose who made us forget we asked for daughters, “California-rolling-baby-style.” Eighteen months later, we had our second child, and early sonograms told us we were expecting a daughter- yes! Because there were complications with this pregnancy, we had bi-monthly check-ups to track growth and development. At the last sonogram barely a week before delivery, “she” turned around and flashed us with a highly visible third leg. This baby was already playing tricks on us early on, so his Mama decided to get even. Alphonse wore pink during his entire infancy, haha.

So we were zero for two- no daughters and our sons didn’t exactly come into this world perfectly healthy and bouncy. Both boys had early health issues, but a lot of them were resolved by their sixth month, and let me tell you, they were the two most beautiful babies we had ever seen in our life!

While Alex went on to blossom beautifully, Alphonse’s development began lagging. After his first birthday, he lost his words and stopped making eye contact. When he needed something, he would grab us by the hands and lead us to what he wanted. He didn’t know how to ask. He no longer tried to speak; he just grunted a lot. He flapped his arms and hands, walked on tiptoes, and spun everything he could lay his hands on, even Oreo cookies. After some wait, at a year and a half old, Alphonse received a clear-cut diagnosis of autism.

In the last 25 years, we have had a rollercoaster ride with autism; it has led us to depths and places we never even knew existed. To say it has been difficult would be an understatement because the truth is, this kind of life is not something we would wish on anyone. It is draining, exhausting, incapacitating, and a lot of times, demoralizing. When you deal with meltdowns, aggression, and self-injury on a daily basis, it takes all your energy just to get through another day.

Still, what we lack in so many things that make up a “normal” life, we try to make up for it in the things that matter. Laughter. Love. Faith. Grit. Gratitude.

These are the things that allow us to wake up every single morning, get out of bed, and do the same things over and over again. They allow us to bravely welcome a struggling man-child into our arms to calm and soothe him, certain that we will get hurt in the process. They allow us to laugh, to take things in stride, and say “Hey, at least, it wasn’t THIS bad.” They remind us that this difficult, prickly, oftentimes combative, young person is a child we have loved since the day he was conceived; we just always wish we could make things easier for him.

When you have love, you have gratitude. And when you have gratitude, everything is enough.

This smile, this moment captured forever in this photograph, this is enough.

Tears for Fears

Towards the fifth month of our kitchen training/enterprise with Alphonse Reece, our son with severe autism, we realized one thing: although he was encouraged by the extremely gracious feedback we were getting, he was also becoming increasingly jittery, anxious, self-harming, and aggressive over the last few weeks. Every day, we experienced longer and longer meltdowns triggered by just about anything. We knew the signs; we had seen them before. It was time for a break.

So, last week, we decided to take a brief respite from the kitchen to reorganise his activities and identify his key participation points. We decided that we would use the time to decompress and allow all of us to regain our equilibrium. We wanted to be able to get back to the kitchen with joy and inspiration, and not have it feel like a chore or a responsibility he would dread each day.

We planned the break to coincide with the short trip I was taking with friends. Before I left, my husband and I discussed what we wanted out of his regular days at home- a little work, a lot of play. They would keep his activities light and demand-free. Through all of these, daily affirmations were required given with as much enthusiasm, energy, and excitement as we could muster. (This was harder done than said- we are mostly boring people, haha!) Anthony and Alex had to remind him continuously that we will help him always and that we love him, no matter what.

Daily phone calls kept me abreast of developments at home. Alphonse was clingy and possessive of his dad, as expected. Throughout the day, if he didn’t have a hand on his dad’s arm, he would glance at his dad to check on him and see if he had moved from his spot. If he did, say, even just to use the toilet, he would immediately run after him. There was less fear now but the insecurity was difficult to shake off.

When I got back, Alphonse was sweet and loving but still very apprehensive. His heart would race when one of us would go away even for a short time and we had to reassure him repeatedly with a pinky promise that we were coming back. There were some tense moments, with flashes of anger and aggression directed at us, but we really didn’t know the depths of his despair and fear until the night he broke down in tears.

Alphonse cries a lot, but they’re mostly vocal sounds- grunts, groans, howls, ululations- with no tears. We haven’t seen him cry with real tears in years, so we know that when he does, they come from a place of such deep anguish, pain, and grief.

A few nights ago, for reasons still unknown to all of us, he just started sobbing louder and louder, tears streaming down his face until he was all spent. We still don’t know why. All we know is at that moment, he poured his heart into those tears and we could do little but wipe them dry and remind him over and over again that he is loved.

Truth is, we’ve always wondered what he thinks. It’s a puzzle to us, even after all these years. His difficulty in acquiring more complex skills has limited his ability to communicate. When we started incorporating Son-Rise techniques in our everyday life, he developed more expressive vocalisations, more “eh-eh-eh-eh” with distinct intonations and patterns. His PECS cards come in handy but his volatility oftentimes preempts their use. Falling short, he has always resorted to self-injury and aggression.

Because of this, we’ve decided to extend our break for a few more days. Next week, when we resume our training, we hope to be stronger, happier, and healthier. May I ask you then, dear friends, a favour please? Please keep Alphonse and our family in your thoughts and prayers. We need them most now.

Thank you so much and God bless you all!

Mismatched Slippers and Broken Wings

The other day, Alphonse cried for hours straight- three hours, to be exact- and no amount of redirection, of trampoline time and water play, of coaxing and cajoling, and of kissing and hugging, could make it better. That day, he wanted only one person. And it wasn’t me.

While we waited for that person (guess who?) to come home, we did all that was humanly possible to occupy his thoughts and his time. It wasn’t easy, but at the end of the third hour, he managed to give us a wan smile.

When his Dad came home in the late afternoon, Alphonse was feeling considerably better but with the arrival of his favourite person, he turned absolutely ecstatic. He stayed by his Dad’s side the whole time, holding his hands and gripping them in uncomfortable positions. He insisted on sitting on his Papa’s lap, and if you can imagine a grown man being cradled gingerly on the lap of another, that’s exactly what they looked like. Alphonse didn’t even ask for a car ride or a McDonald’s treat. All he wanted was time in the world to be with his Papa.

Later that night, after Alphonse went inside the schoolhouse to decompress for the day, A❤️ found a pair of mismatched slippers by the schoolhouse door.

“Hon, these are Alphonse’s slippers but they’re from different pairs. Where are the matching pairs?” he asked me.

“Lemme see… I think he left them in the kitchen. Ohh, wait, here they are!” I replied. I saw one foot by the microwave stand, the other by the fridge, a sure sign that he had kicked them off in a hurry. I picked up the slippers and a fleeting ache twinged ever so slightly as I stepped outside to give the slippers to my husband.

It’s funny how one snapshot of a random thing in your busy day could be a cause for endless worry. Those slippers reminded me of the extent of Alphonse’s needs. Alphonse will be 25 in less than two months and he still needs us to remind him to wear the correct pair of slippers and on the correct feet. In his distress that day, he ran around the house crying, naked but for those mismatched slippers. I suddenly found myself weeping again, as my heart ached for the possibilities that have been denied him.

While parents of young men and women lament their empty nests, my husband and I will never experience that in our lifetime. And it isn’t because of lack of trying. It’s just the way it is. Some birds never leave the nest because of their broken wings, and it’s alright too. We never give up hoping, praying, and working to give our children the opportunities for flight but in the end, all we can really do is to love them.

Only When Drunk?

I was browsing through an old planner when I read this entry. As you can tell, Big Brother Alex can be a bit of a wise-a**, but he never fails to make me smile.

~0~

August 3, 2015

From where we were in the house, Alex and I could hear Alphonse laughing out loud, his deep man voice punctuated with girlish squeals and giggles.

Alex: I love Alphonse’s laughter, Ma. There’s something really sweet about it. 😍

Mama: That’s because it’s so genuine and heartfelt. And it’s so hearty. 😍

Alex: Well, you can just imagine, Ma, that were he not autistic, you’d only get to hear that kind of laughter when he is drunk.😉

Mama: Toinks! 😳🤪😂

Freaky Friday, Believe It or Not

So Alphonse has been having a lot of sleepless nights over the last few years, and this was a strange occurrence because it rarely happened when he was much younger. Back then, you could always count on him to fall asleep at a reasonable time and stay asleep the whole night. Sleeplessness was one of the things we didn’t really experience much of when he was a child so we were totally unprepared for the changes that came during adolescence.

In his teens and, now, early adulthood, the frequency and duration of his sleep issues have multiplied exponentially. We knew that physical discomfort (usually GI distress) was a major culprit in his insomnia so he received periodic treatment for these issues. We also kept a closer watch over his diet, adding more supplements and probiotics to ease his tummy problems. These helped a lot, but not entirely. Sometimes, he would stay awake for no discernible reason. He would be irritable but would not seem to be in pain, so we would just stay with him, watch and observe him through the night, and assist him in his needs.

I don’t recall exactly when the realization dawned on us, but we noticed that when there was a death in the family- a relative, a close friend, even a neighbor- Alphonse would have one or two of his sleepless nights. Then we realized something even weirder. Alphonse’s episodes of sleeplessness always preceded our knowledge of that person’s passing. What would happen was this: Alphonse would stay awake the whole night and THEN we would find out the next day that someone we knew had died.

Which brings to mind the night my Dad passed away. For some reason, Alphonse was awake beyond his 10pm bedtime. Back then, he would be in bed by 9, and be fast asleep an hour later. That night, however, he seemed restless and anxious. He paced around our room and resisted our attempts to put him to bed. When the phone suddenly rang at eleven, he stopped his pacing, stood still at the foot of our bed, and looked at us expectantly.

The call came from my sister-in-law, and she asked me to tell Mommy that Daddy was gone. I remember looking to my husband in confusion, tears streaming down my face, and seeing Alphonse still standing at the foot of our bed. He looked relieved. And then, just like that, he went to bed without a sound, without fuss. I’ve often wondered what was going through his mind then. A part of me believes now that he already knew- that Daddy had said goodbye to him and told him not to sleep till we knew- and this idea, however absurd it may seem, doesn’t seem so far fetched in light of what else we have observed in the years since.

We didn’t really make the connection till much later, but when one of my cousins died, he didn’t sleep a wink till the next day. When my aunt passed away, we had a series of those sleepless nights again. The idea began to take root when our regular handyman, our kindly neighbor who repaired all of the things Alphonse accidentally or willfully destroys in the house, passed away suddenly from a stroke. We found out the news the next day, after another long night staying awake.

A few nights ago, Alphonse had another episode of his “extended wakefulness.” We kept asking if he had an “ouchie,” and he just kept answering “no.” But for some reason, sleep for him was elusive, so we were all sleepless that night too.

The next day, we saw one of our neighbors setting up an open tent in front of their house. By mid-afternoon, we observed that there were preparations for a wake in their home. A lightbulb turned on in my head so I thought to ask Alphonse this: “Alphonse, do you see ghosts?”

Alphonse nodded. You should have seen my jaw drop.

I wasn’t even sure he knew what a ghost was so I kept probing. I needed to check if he was nodding on default or if he was really listening and paying attention. I asked a series of different questions.

Me: “Alphonse, do you have an ouchie?”

Alphonse shook his head.

Me: “Alphonse, when you can’t sleep, do you see poop?”

Alphonse smiled a bit and shook his head again. He looked at me intently. The eye contact was unexpected.

Me: “You see ghosts?”

Alphonse nodded.

Me: “Are you scared?”

He nodded again.

Me: “Are they good ghosts?”

A nod.

Me: “Are there bad ghosts?”

Another nod.

Me: “Is that why you can’t sleep?”

He looked at me with those wide, innocent eyes and I felt the hairs on my arms rise.

He nodded.

Me: “When you’re scared, you pray to Jesus, okay?”

He looked at me, smiled, and nodded.

Me: “Mama and Papa and Kuya will help you.”

He shook his head.

Me: “Really, Alphonse, we will always help you.”

He gave me a kiss, then stood up and walked away.

Conversation over, Mama, he seemed to say.

I don’t know what to say. Truth is, I don’t know what to believe. But I think that Alphonse is more attuned to this world more than we think he is, and if I think this, then I believe that he sees and feels beyond what our normal senses can.

Oh, I feel the hair in my arms stand up again.

Autism, Work, and The Search for a Meaningful Life

When Alphonse was diagnosed with autism at a year and a half, the future was vague, nebulous, and filled with so much uncertainty that we could not think or plan beyond what was right in front of us. The diagnosis of severe autism and how it will change the trajectory of all our lives shook us to our very core.

Alphonse at 18 months of age

When he grew a little bit more and became a child and later on, a teenager, we lived through periods of perpetual crises that came one after the other. While parents of neurotypical children could help their kids plan ahead for college and career paths, we remained at a standstill working on the very same issues year after year. Toilet training and how it appears and disappears at a whim. Aggression. Self-injury. Pica. Obsessions and compulsions that dictate the very rhythm of our lives. When you have your hands full and your mind constantly preoccupied with even the most basic of life skills, the future is not something you can readily imagine.

The years passed quickly, and before we knew it, Alphonse has grown to adulthood. Despite early intervention, years of behaviour and social skills training, and continuing vocational instruction, his challenges and difficulties have made it nearly impossible for him to find a comfortable place to settle, bloom, and become his own person. In the last few years, we have explored different areas of interest Alphonse might enjoy, and we have found none to keep him motivated. Unlike some of his differently-abled peers who have found success in the workplace, employment isn’t going to happen for him anytime soon, not unless we help make it happen for him.

We find ourselves now staring at this once dreaded future, standing at these crossroads where independence and opportunity meet. Even as we continue to struggle with issues of independence, we must now create the opportunities to make self-sufficiency happen in our lifetimes.

This is the raison d’être of Reece’s Pizzas and Treats, the dream that we could help our son find purposeful meaning to his life through work. Reece’s Pizzas and Treats, as we envisioned it, would be a line of low-carb, gluten-free, and keto-friendly products based on Alphonse’s favourite food- PIZZA! 🍕

As my husband takes on the major task of building on funds for our son’s welfare and needs, the plans for making Reece’s Pizzas happen fall upon my shoulders. Training Alphonse to take on different tasks, as well as incorporating these into his daily routine, has already begun, but as is often our experience, this is a long, tedious process that finds us doubting our capabilities and flagging in spirits. I have to admit that with so many hats my husband and I wear everyday, we sometimes find ourselves overwhelmed and in need of a clearer direction. Personally, entrepreneurship is something that is foreign to my natural inclination, education, and experience, and I find myself second-guessing my decisions for Alphonse and the business many times throughout the day.

Alas, the Universe always sends me a kindness when and where I least expect it. From out of nowhere, an invitation drops into my lap and it seems like an answered prayer.

The fourth run of “Game Plan for Success” begins on April 13, a short two weeks from now. In its previous iterations, it has helped more than 40 women find clarity in their goals and achieve them. The event is interactive, allowing participants to explore their personal motivations and manage the resources they will need to make their goals viable successes. Sponsored by The Fulfilled Women, a community organization of women led by Ms. Viviene Bigornia, this is a workshop made for women by women.

If you want to translate your unique ideas into realizable business, come and join us! Find out how this can help you get in track to fulfilling your goals and check out this event page in Facebook:

https://www.facebook.com/events/547073455785377/?ti=cl

Ladies, it’s our time. Let’s make this happen.

A Safe Space for Alphonse

So I finally did it. The first batch of my Sylvanian toys has been shipped to their new owners and Project Alphonse’s Safe Space is officially started!

Alphonse and his “six-teeth-less” smile, heehee

As many of you already know, I started collecting Sylvanian Families at one of the lowest points in my life. At that time, I had injured my neck and suffered stiffness and mobility issues in my neck, spine, and upper limbs. After one particularly rough day, my husband gave me a set of Sylvanian Families figures to make me feel better. Something in that gift ignited and fuelled an interest and passion for all things Sylvanian, and from that single four-figured family set (and a baby!), my collection grew exponentially over the years. Pretty soon, my Sylvanian Families toys took over every nook and cranny of our home.

Over time, I acquired items not only from local toy stores but also from abroad, all while navigating online websites for great deals. With my husband’s unwavering support and encouragement, I was also able to tick off my bucket list some Sylvanian-inspired dreams. A few years ago, I travelled to London to visit SSK (Sylvanian Storekeepers) and, in the same year, visited Japan to see the Sylvanian theme park in Grinpa. Collecting Sylvanian Families proved to be instrumental in my physical recovery from my injuries. Best of all, it linked me to a worldwide community of collectors who became my friends. Looking back, I truly enjoyed every second of this ride.

And then one day, when one of my old high school friends passed away unexpectedly, it suddenly dawned on me how little time is really given to each one of us. I was also reminded of the tedious, exhausting year I spent disposing of my father’s collection of various items when he died- knowing none of us had the time or predilection to care for it- and the burden, sorrow, and dread it filled me every single day. I certainly didn’t want to pass on this same burden to Alex when he will have enough on his plate with the care of his brother.

As I pondered on all these, I was faced with another pressing concern. As Alphonse grew bigger and stronger than us, we realized that our daily living accommodations were no longer enough to keep him protected; we needed to create a “safe space” for him for those nights when his energy refuses to dissipate into rest or for those times when his anxiety and anger get the better of him. While Alphonse already has his playroom (which doubles as his bedroom), we felt we needed an even more controlled environment where he could decompress and relax. The room we envisioned would be padded, sensory-friendly, and child-safe, but also relaxing and comfortable.

One night without sleep is one night too many. 🤯

When Alphonse doesn’t sleep, we don’t sleep! 🥴

We looked at the Internet for inspiration and we found companies that specialized and custom-built them. I spent more than a few nights poring over pictures and prices, customization and colors, sizes, and designs. Alas, not only were they expensive; they were also available only in Europe and in the US. The cost of transporting one to the country, with the current tax measures in place, would be more than our pockets can bear.

The most logical option is to DIY one for him. After taking a good look at our home’s layout, we found the perfect location to be my Sylvanian storeroom. This extra space could easily be an adjunct to his living space, making the transition easier for him.

Ultimately, it was Alphonse’s need that proved to be the tipping point in my decision to let go of some of my Sylvanian Families, dolls, and other sundries. When the Sylvanian storeroom is cleared enough, the funds acquired from this sale will jumpstart the renovation to install wall and floor paddings, smart lights, cctv cameras, and audio/video equipment.

Over the last few months, I have already re-homed some of my precious toys, but there are still more to be organized, sorted, and sold. I will keep my favourites to give to my future grandkids, but the rest will have to go to give Alphonse his safe space.

Should you be interested in the purchase of Sylvanian Families or dolls (I also have duplicates of Blythes, Barbies, and accessories) or even just in helping out to make Alphonse’s safe space a reality, please send me a message here or on Facebook. I welcome all help.

Someone asked me if this means I am saying goodbye to toy collecting, and, consequently, to the friends I’ve made. Truthfully, I don’t feel like I am giving up on my community of collector friends. The desire to enjoy Sylvanian Families toys remains just as strong as the first time I laid eyes on them. I look at this decision as simply an opportunity to enjoy playing again instead of always obsessing for the next big thing.

The long and short of it is this: I want to love more and want less. And in wanting less, I hope we will be able to give Alphonse his own safe place.

Kittymama loves her new SF family! 😍

Collateral Blessings

(Or How to Turn Crappy Days into Gratitude Days)

I came home with a rare social high from back-to-back outings recently. Truth is, it has been a long time since I did anything for myself and by myself that did not have anything to do with household chores and management.

The other Friday, I had gone to a very informative, whole-day baking class under Ms. Beng Legaspi. I learned loads about the science and art of gluten-free/sugar-free baking and picked up tips and tricks that can come only from years of research and experience. I also made new “Baking Mama” friends, some of whom were already pros in the kitchen.

With my “classmates” (Photo credit: Ms. Jan Rubi)

Our class photo (Photo credit: Ms. Beng Legaspi)

Then the next day, a Saturday, I attended a Sylvanian Families Christmas Party luncheon hosted by Sylvanian Families Collectors PH. I was reunited with old collector friends, Analyn and Ledz, both of whom I haven’t seen in years. I also met new collector friends, some of whom I have only seen in Facebook. I’m grateful and honoured to be friends with Rose and Robert, one of my favourite couples in the world, and with Joann, Nenette, Blair, Christine, Mely, and many others who welcomed this old Sylvanian junkie with open arms!

Sylvanian Families Collectors PH is ❤️

As you can already tell, I have been home bound for much of these past few months, taking care of Alphonse and nursing my knee injuries, that days out for myself and with friends have definitely been rare and far-in-between. A❤️, bless his kind heart, gave me the time to enjoy these events by taking over Alphonse’s care for those days. Alex, my eldest, pitched in to help, forgoing sleep to sub for his dad when A❤️ needed to do something else.

And then disaster struck.

Within an hour of my return home that Saturday, Alphonse had a meltdown that ended with Christmas ham and gluten-free chocolate cake samplers being smooshed all over my head. My short absence, coupled with the unexpected visit of relatives that day, had set him on edge, making him anxious and irritable. Even after that episode ended, when he would have otherwise been able to shrug off his nervous energy, he never lost his angry snarls and discomfiting whines. He was rigid, obsessive, and controlling, barking his often unintelligible demands one after the other the rest of the day.

To illustrate:

“Heh!” Alphonse shouts loudly to his dad. Translation: “Don’t move your leg, Papa!” A❤️ moves his leg slowly to return to an “acceptable” position.

“Heh!” Alphonse shouts again, this time at me. Translation: “Touch your glasses twice, Mama!” I nudge my glasses down my nose and up again.

“Heh!” Alphonse directs his bossiness at his brother. Translation: “Go back the house again!” Alex steps inside the house and steps back out, doing this twice, to complete a ritual that exists only in Alphonse’s head.

By early evening, we were all exhausted and impatient for the day to end. Our nerves were frayed, and we felt beaten. In the last few weeks, we had been hopeful that we had found a good formula of routine, play, and exercise to keep his bad days to a minimum. Saturday was a sudden turnaround to the progress we had been making. As is often the case with our journey with autism, when we take one step forward, we wind up taking two steps back again.

The following days turned out to be more of the same, angry, dark days that got worse at each transition point. Somehow, we found the strength to stand up and carry through each day, pacifying, calming, and working with Alphonse to dispel his anxieties.

But something worth telling happened to me that Saturday. While Alphonse had my head in a wrestling hold, his fingers alternately pulling out strands of my hair and massaging as much cake and ham as possible to my curly ‘do, I felt an unexpected wave of calm wash over me. It was weird because I suddenly felt disconnected from myself. At that moment, it dawned on me that even in that lock hold, there were still things I was in control of. I could choose to wallow in the sorrow of the occasion, or I could choose to be grateful. I had a choice.

With that, I quit struggling under Alphonse’s strong hands. My breathing slowed down. Instead of pulling away, I pushed nearer him and quietly stroked his hands. And then, I began to list all the things I could think of, making mental notes of each one and giving thanks in a silent prayer.

It started with this epiphany: Hey, my head didn’t hurt as much! It seems that short hair, even when pulled with all the strength of a vigorous, severely autistic, young man, doesn’t give in as easily as long hair does. I had rued the loss of my locks for a time but ultimately, I was grateful that Rose, my longtime hairdresser friend, had given me my (fat) pixie look.

Next, Ms. Beng’s gluten-free and sugar-free chocolate cake did not only taste good, it felt really soothing on my scalp too! Who’d have thought that was possible?

Also, Alphonse may have been raging with fury, but some semblance of restraint kicked in that day. The old Alphonse would’ve fought us off till he was spent of all his anger. His next move was patented: he would’ve kicked me in the chest even as he pulled down my hair. Yes, Alphonse would’ve wrought maximum damage easily had he wanted to. Saturday, however, despite his shouts of protests, he listened and backed down. Thank God for that!

Then too, and most important of all, A❤️ and Alex relieved me of the burden of Alphonse’s care until I could change and wash my hair. True, for a while, I did give in to tears, more from disappointment than from pain, but when my boys’ consoling arms enveloped me in a family hug, I was able to wipe my eyes dry again and feign a smile till it became real.

The way I see it, there will always be unintended, unintentional damage when it comes to dealing with profound autism. We get hurt, physically and emotionally. God knows how many cuts, bruises, bites, and wounds we’ve had to endure over the years. We get frustrated and disappointed. We become angry and afraid. We are, after all, human.

But if there’s one thing we’ve learned through the years, however, it is this: that autism, despite its many difficulties, also has its fair share of goodness – what I’d like to think of as collateral blessings.

Because of autism- and Alphonse- we discovered our personal strengths. We learned to roll with the punches and to shrug off episodes of sorrow and anger as just “blips” to a normal day. We learned to live with hope and optimism always, even when things look bleak and dreary. We honed our ability to laugh and celebrate even when we are hurt and in pain.

We found within ourselves a fount of complete forgiveness – one that comes easily and bears no ill will or grudges. This process goes both ways, as we have sometimes also inadvertently wronged Alphonse in our lack of understanding of his needs. We learned to live each day with overwhelming gratitude that springs from rare moments of peace and joy. Perhaps, best of all, we are able to recall and summon love- at will- even in the midst of horrible, debilitating despair.

Life with autism is often wearisome and difficult. But Love, we’ve learned, is not.

These are the blessings that sustain us each day.