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.

Our Daddy Always

When Alex was a year old, we taught him to call his grandparents Daddy and Mommy. (A❤️ and I were Papa and Mama.) He tweaked this a bit by adding Lolo (grandfather) and Lola (grandmother) to their names, thus coming up with Daddy Lolo for my dad and Mommy Lola for my mom. A❤️’s mom was also Mommy Lola, although as he grew up, he decided to call her Mommy Flower (her real name was Flora) or Granny Flower. A❤️’s dad was also Daddy Lolo, but this evolved into Daddy Only, from a telephone conversation they had when Alex was three.  

Three-year-old Alex: I love you, Daddy Lolo.

Daddy: Alex, just call me Daddy. Don’t add Lolo at the end anymore, okay? Daddy only.

Three-year-old Alex: Okay, Daddy Only. I love you.

 The name stuck.

Daddy is, and will always be, my kids’ Daddy Only.

~0~

Daddy Only had a massive hemorrhagic stroke while driving home from a friend’s house last November 8, Friday night. He did not sustain additional injuries from the accident and, thank God, there was little damage to the car and driver he hit. He must have sensed something that made him slow down (and Daddy was always a fast driver, even at his age) but we will never fully know the events of that night as he never regained consciousness. After a few days in the neurological ICU, Daddy passed away at a little past one in the afternoon of November 14, New York time.

Daddy treated me like a real daughter; in the more than 28 years I have been part of his family, he never showed me a single moment of unkindness. He wasn’t the kind to be overtly sentimental and effusive in expression, but as he grew older, he also became softer and less stringent in affection, dropping “I love you’s” in our conversations and laughing heartily when we rained him with more of the same.

Where Alphonse got his good looks

My history with their family dates back to my high school friendship with A❤️ but in those days, I only ever saw his dad from afar. My first real encounter with his father was when I was already a freshman in college. One afternoon, I dropped by their house to deliver a letter for A❤️ and I came upon a really good-looking man sweeping the front yard of their home. He had on a pristinely white shirt with matching white shorts, and his jet-black hair was slicked and combed back. If I remember the event vividly, it was because the man struck me as “movie star handsome.” He broke into a wide smile when I introduced myself and called on his son, who, at that time, was gangly, gawky, and, yes, a bit pimply. I could see A❤️ ‘s close resemblance to his dad, but back then, Daddy cut a more imposing figure than his son. Family lore has it that when he left Silay for Manila to go to college, he was offered to be trained as an actor in one of the old film studios, but he declined because he was shy.

Over the years, I have built an encyclopaedia of memories with and of him. Because of the geographical distance, most of them are from the weekly Skype or phone calls he faithfully made to us. The most precious ones, however, are from his short visits back home or the times we went to New York to see him.

Daddy was always a no-nonsense kind of guy. He was pragmatic, down-to-earth, and not one to waste a single moment dwelling on “what-ifs.” He was thorough and decisive. When faced with difficulties, he was slow to burn, patient, and not quick to anger. I think A❤️ got those same qualities from him.

When their family decided to leave for the United States in the late eighties, Daddy did so with a lot of apprehension but he did it for his family. He left behind a promising position in Manila (he was bank manager of the PNB Rizal Avenue branch) and worked long jobs in the early days to make sure his family would be comfortable in the US. I try to imagine the humility it took to accept jobs that were beneath his education and experience, all to make sure he could build a future for his children, and it is something that still fills me with awe and pride today. With hard work and perseverance, in time, he found a job that he enjoyed, and he stayed with the same company till he retired.

Daddy with Dale and Joyce, A❤️’s younger siblings

I think of Daddy often as a strong man but in truth, he could be silly and soft, too. Joyce, in particular, his only daughter, could melt him in a putty. The grandkids could always elicit laughter from him, never mind that Alphonse could only repeat the same few syllables over and over again. He also never forgot birthdays and he would call to greet them and say that he loved them. He loved his children and their children, no doubt about it.

Daddy and his Junior, the last time they were together

Over the years, as he built a life in New York now apart from his grown children, he made sure he was always there for all of us. Even with almost 9000 miles between us, we knew he would be if we needed him. He guided and advised us, reminding us of things we likely took for granted. And when our lives turned difficult and split us in different directions, like the Father above us, he never wavered in his faith in his children. He always believed in the best of us. He believed we would find our way back to each other again. And we did. Thank you, Daddy.

Now that you will be with us only in our dreams, it is time to upgrade your moniker from Daddy Only to Daddy Always. You will always, always be a Daddy to us all.

Thank you for welcoming me with open arms into your family, Daddy. Thank you for giving me and Alex and Alphonse a space in your heart. We’ll see you in a little while. We love you so.

Above All, Be Kind

No filter. No makeup. Just me, my fat, and all my years on this earth. I realise I am not a makeup or jewellery or expensive clothes/shoes/bags person; I am what you may call a geek. A nerd even. But it’s alright. I am finally happy to be who I am.

I was looking at this picture today, trying to decide if I even wanted to share it. I looked grubby and a bit tired. I was relieved that the stain in my shirt didn’t show. But you know what? I also looked happy, and that kind of happiness, for many, can be quite elusive in these days of worry and anxiety.

Truth is, I am not always a happy person. And for a time, I was saddled with such great unhappiness that I thought the world could move on without me.

For years starting when I was eleven, I slept with a can of insecticide under my bed. It was a daily struggle to want to be alive. For a time, I also cut myself- short, shallow cuts made where no one could see. There was little blood but the acuteness of the pain was an addictive jolt. In later years, I peeled the skin off my feet so deep that my shoes and bedsheets always had blood stains in them.

My closest friends knew what went on in those early years: I was socially awkward. I was called names and made fun of. I received cruel notes that left me in tears. Some even had the gall to say the insults straight to my face.

We don’t like you. Can’t you get that?”

“No one likes you here.”

“You’ll have to find another group. We can’t work with someone like you.”

“You’re cheap.”

When you’re a young person wanting so much to fit in, knowing that you are unwanted by your peers- hated even- is a devastating blow to your sense of self. But I kept my mask up, never admitting to weakness or shame or pain. And I cried, always alone, in the bathroom of my childhood home, scrubbing my face clean off tears and snot before I went back to pretending again.

In time, I became an expert in masking my pain. While I practiced my social skills, I also learned to seek persons whose interests were close to mine. I developed a radar for kindness. I knew that if I “looked” happy, everyone would just assume I was. When one of my teachers described me as “vivacious,” I was amazed because inside, I was anything but. Inside, I carried all those hateful words in those letters. Inside, I still withered.

It took years before I could finally say I was safe and happy. It took a lot of prayer, advice, counselling, and love to scrape my festering wounds clean. It took friendship and family and God.

Over the years, there have been events that pulled me back to the edge of darkness. Some were big events. The death of one of my childhood best friends. Being hurt and dumped twice (!) by a young man I was enamoured with. Being rejected for being fat and ugly. Being disowned by family. Being beaten daily by a child you love more than yourself. Others were smaller, everyday events, but they didn’t hurt any less.

These days, when I am teeter-tottering on the edge again, I remind myself of what I have. I have my family, the one I was born in and the one I have made, and they have been my constant source of strength. I have kept my true friends from that age of unhappiness and they are my staunchest, bravest defenders. Still, if I have to name my saving grace, it would be my bestest friend in the whole world. He has pulled me off the ledge so many times that I have lost count. If I had to credit anyone for me being here today, it would have to be him. He knows me inside and out, sometimes, more than I know my own self. Thank you, A❤️.

Even today, I don’t think I am whole yet. But I am healing a little bit more each day. The desire to stay is stronger now. When I feel the push again, I know I can ask for help and I know I will receive it. My boys, they help me push back now.

I won’t presume to know what’s in the mind and hearts of those who are still hurting, but I hope you know that you are not alone. I made it through the other side and so will you. Just keep repeating that to yourself, even when it’s almost difficult to believe.

Despite all my wounds, my scabs and scars, I feel loved. I AM loved. And yes, I am happy. Truly, that is all I will ever need.

#backfromtheedge #lovingyourself #nofilter #bekind

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.