His Mama’s Name

Every morning, we follow a routine to get Alphonse ready for the day. Part of this routine is taking his medications after breakfast. Even the order of his medicines has been planned to get him to swallow his pills and capsules first before we shift to those that need to be chewed, such as his supplements.

Every morning, this is our dialogue:

Me: This is your first medicine. It is yellow and small. Are you ready?

Alphonse: Ha! (Which means “yes.”)

I put the yellow pill on his tongue and he dry swallows it. He takes a sip of water afterwards.

Me: This is your second medicine. It is pink. Your Mama’s name is Pinky. Pink color and Mama Pinky!

Alphonse: Ha! (Which means “yes,” again.)

Mama: Are you ready for the second medicine?

Alphonse: Ha! (Which means “hurry up and give it to me already!”😜)

I hand him the second one and he dry swallows again. Sometimes I have to remind him to take a sip of water to wash it down.

Me: Please drink your water.

Alphonse obediently takes a short sip. Then he opens his mouth to show me there is no pill inside.

Alphonse: Ha! (Which means “Look! It’s all gone!”)

Mama: Wow! You did that very well! Thank you for taking your medicine.

We do this until we finish all his morning medications, eight all in all, including chewable supplements.

At the end, I ask him if he remembers his Mama’s name.

Me: Alphonse, do you remember my name, baby? I told you my name at the start.

Alphonse: (pauses to think, then smiles broadly) Ha!

Mama: Okay, big boy. I know you’re smart. What’s your Mama’s name?

Alphonse: (takes a deep breath, then shrieks) Mama!!!

What a smart boy I have! 😂

This is Alphonse being naughty and cute at the same time, hehe. He loves mouthing stuff and would walk around carrying this -or some other thing- in his mouth. (Yes, that’s a KFC gravy cup which we reuse for his little snacks and cut-up fruit. )
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Easter and Autism

Alphonse didn’t sleep on Thursday night, which meant the whole household went with little or no sleep, too. We were all addled and dazed the next day, doing our chores on autopilot even as our brains were blinking red in distress. Lack of sleep, repeated over and over again over time, has a way of wearing all of us down.

While most families were in their rest and relaxation modes for the long weekend, ours was in full work mode- keeping him busy, pacifying his fears, redirecting his aggression, and making him happy. There is no respite in sight. It’s not fair, I know, most especially for Alex, but for better or for worse, this is our life.

Then yesterday, in a sudden fit of anger, Alphonse pulled my hair again -what’s left of it, anyway- and kicked me on the chest while I was down. As I staggered beneath the weight of his heavy hands, I felt his foot connect with my chest. The kick came so unexpectedly that against my better judgment, I shrieked and cried for help. In the last few weeks, talking Alphonse down from the edge had worked rather well, but yesterday, he was in full meltdown mode that he was unable to pull back anymore. My husband, alerted to my cries, rushed to my aid and was able to disengage Alphonse from me. He took over the rest of the afternoon, doing gross motor exercises with Alphonse to tire him for the night.

This morning, my head heavy and throbbing, my chest tender and hurting, I had to summon all of my good cheer and positive energy to face Alphonse again. I have to be honest; sometimes, it isn’t easy to wake up raring to face the world again, more so when the past day has been a particularly bruising one. Some days, I wish I could just bury my head in the sand and not come up for air. But seeing Alphonse- wide-eyed and unsure each morning, stepping into our world with such fear and trepidation- erases all my ambivalence and I dive back head first into our daily grind.

When I reflect upon the Holy Week and what it means to us as a family, I am reminded that Love is a truly powerful force. It is Love that makes forgiveness possible, even when we have been hurt over and over again. It is Love that summons mercy and compassion even when anger and disappointment threaten to overwhelm us. It is Love that covers us with an impenetrable armor of hope and optimism. In the middle of tears, it is Love that makes us laugh and smile again.

I admit I have been dispirited and disheartened many times over the last few weeks. Working with Alphonse daily is exhausting work that requires pouring all my emotions, energy, and attention into him; when he rejects me as he does, I am crushed and defeated, submerged in a sorrow so deep that my strength and determination are often not enough to drag me out of my despair. But Love, even in the darkest, deepest hole, brings a sliver of His light and I am able to recognize- nay, see-something beautiful and hopeful in Alphonse and in our lives again. Without darkness, there is no light, this we know only too well.

In the season of His rebirth, we are grateful to be reborn in hope as well.

“Not The Mama”

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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! 🤪

Journeys

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

Love in Lasagna

lasagna-copyThe very first dish I ever learned to make was a lasagna. Not adobo, which took me 15 years to learn; not sinigang, which I could not stand to eat till I was in my forties. Apart from grilled cheese and liver pâté sandwiches my father taught me to make for our midnight snack dates, lasagna was the only thing I knew how to make for years. I learned from necessity, because I wanted to eat it.

In the beginning, I cooked only for myself. I would make one 9 x 13 pan and devour it in one sitting. No leftovers, I’m not kidding! Well, most of the time, really, heehee. Today, I’m sorry I did not share with my brothers and sisters more, maybe then, I’d  have shared part of my heft too.

When I had made the dish enough times, I found the confidence to share it with others. And so, I made it for my friends in med school. They seemed to like it, judging by the empty pans I would lug home. Well, it was that, or they were just being kind to me.

I also made lasagna to impress my then-boyfriend and years later, when we got married, the dish became his special request for occasions like his birthday or our anniversaries. Of course, as much as we would have wanted to have it everyday, it was a bit over our measly budget as newlyweds and, later on, too labor intensive for new parents.

One memory that comes to mind when I think about lasagna happened when we were very young. On his 25th birthday, amid a series of family disputes (long story), I burnt the lasagna meant for his birthday dinner. In the drama of the day, I totally forgot about it and by the time I remembered, thick, black smoke was coming out of the oven. I remember holding the burnt pan over the sink, crying over it and our woes. I was about to throw the whole thing in the trash when A♥ silently took it from my hands. He set it on the table, helped himself to a huge serving, and ate it without complaint.

“Thank you for a wonderful birthday, hon,” he whispered in my ear.

“It’s burnt,” I bawled loudly.

“I could eat everything in one sitting. I love it because you made it. And I got to spend my birthday with you again,” he said gently.

I cried even harder after that. I also never burned a single pan after that day.

Last weekend, upon request, I made lasagna for the family and an extra pan for Alex’s friends. I worked late Friday night to get them ready and then woke up extra early to bake them. Making them was not easy for my numb, clumsy hands anymore, I discovered, but I worked with only the best ingredients and poured my best efforts into making sure they tasted the same as they always have.

Alex has already asked me to teach him how to make it. On occasions when he is inspired to make something more than a lazy cup of instant ramen, this son of mine dabbles in the kitchen. One day, he will be making the lasagna in the family. Hopefully, he will share it with friends, with loved ones, and with the family he will make. I find this thought comforting.

When he makes his own lasagna, he will be sharing more than just food that has become a special part of our family. He will be passing on years of our memories, of a family history that included one special dish, and all the joys and sorrows that came with it. He will also be passing on love and snippets of our lives.

Which, I hope, much like the lasagna I served for lunch last Saturday, will be enjoyed to the fullest and to the last bite.

When Life Happens: A Birthday Rolls Around Again

I owe you all an apology again for not having updated in a while. Each time something happens, I make a mental note to write about it, even going so far as to draft it in my mind, but for one reason or another, I never get around to sharing it with you. There’s been a flurry of changes in our home in the last three months. Even as the weather has changed from being hot and unbearable to being cold and rainy and then back to hot again, so has our home and our lives. It’s getting harder to just roll with the changes when they do come, I don’t know why. Maybe it’s just me. Maybe it’s just part of getting old.

The biggest news in our lives, and I mean that of the pleasant variety, is that Alphonse turned 22 last week. I’ve been dreaming of throwing him a party for his birthday for forever, but it simply has not happened and not for lack of trying. He still doesn’t do so well in crowds and noisy places so we figured another way to celebrate this special occasion. Instead of one big blowout, we decided to serve him his favorite dishes- one special dish a day- on the days leading to his birthday. We had pizzas one day, KFC fried chicken the next, garlic shrimps after, and Tita Lulu’s tokwa’t baboy (tofu and pork) after that. On his birthday, we went Asian with Chap Chae as his birthday noodles, Korean fried chicken with honey garlic sauce, and Szechuan style prawns. Not bad for a homemade birthday feast, right?

Aside from the special dinner we shared with a few of our extended family, we planned a picnic for him last Saturday. This one may strike you as strange, but it really isn’t, considering he hates crowdsalphonse-nov52016 and noise. So where to have a quiet picnic away from everyone else? At the cemetery, of course. by my dad’s graveside and on a weekend after All Souls’ Day. Perfect, right?

We brought mats and rechargeable fans, an extra tent, umbrellas, and four pizzas, three orders of buffalo wings, and lots of cold drinks. We sat around for two hours and made small talk while we ate, Alphonse in the middle of it all, relaxed and unfettered. When the temperature soared, we packed up our stuff and cleaned up, then headed home. Alphonse was content and happy, singing his wordless ditties all the way home.

Unfortunately, the planned Sunday trip to Tagaytay didn’t push through. We had a sudden home emergency that necessitated scrapping our plans at the last minute. Poor Alphonse! He was all dressed up and ready to go. I knew he was disappointed, judging by the way he puckered his lips into pouts the whole day. Later in the day, he took two short rides with his dad but even those didn’t seem to make up for the canceled plans. We have to reschedule soon because we made a promise to him; here’s hoping the next one pushes through.

I know I haven’t shared much about Alphonse in recent months. Truth is, as Alphonse gets older, it gets harder to keep writing about him. Physically, he is an adult. Already, he has almost four inches on me and can match me pound by pound, weight-wise. He is strong and strapping, with firm arms and sturdy legs. Cognitively, however, he functions somewhere between three and five years old; emotionally, he is at an even lower developmental level. He is impulsive, obsessive, and requires 24/7 attention. The mismatch between his size and mental age have obviously become wider with time. As such, behavior that may be considered amusing when done by a young child no longer seems cute or funny at his age.

As his family, we see him always through the lens of love. Even at the worst of times, when our lives are consumed by rigidity and explosive violence, our anger comes from our own helplessness and failings and not from a place of hate and indifference, not of him or his autism. Unfortunately, the same cannot be said of others who may now view him as threatening and frightening. This is the quandary I find myself in. To keep writing about Alphonse and all his challenges may mean creating fear and revulsion in those who do not know him or have no wish to get to know him. To stop altogether may mean sweeping his story, and many others like his, under the rug, at a time when we severely need to rectify the public’s misconceptions on autism.

Forgive me for the reluctance to share more stories about him in the future. I will not stop writing, that is a promise I made to myself many years ago when I started to blog, but perhaps it is time to reconsider the direction I may wish to take in this online journal. I’d like to think of it as a way to redefine and reshape our relationship as he grows older. And though you may see him still through snippets of our lives, he will occupy less and less space on this journal as I allow him the privacy demanded of his age.

Thank you to all those who have loved him, even from afar. And thank you for watching him grow up through these pages. It’s time for him to be 22.

25

img_3090_20150917I woke up in the middle of the night to a bad dream. I’ve been having a lot of them lately, it seems. I woke up groaning, almost falling down my side of the bed. I reached out to you and snuggled closer, burrowing underneath the sheets, my leg beneath yours. Instinctively, you reached out for my hand and pulled me closer, my hand over your heart. I felt the slow, regular rhythm of your heart through my fingers. In the darkness, I listened to your soft snoring. I counted your breaths till mine matched yours. I closed my eyes to the blackness around me, no longer afraid, because you were there.

Once upon a time, I wondered if love would ever find me. I had been hurt before- yes, duped and dumped- and my heart had been broken many times over. I found love where and when I least expected it. I found it freely given, without expectation of return or reciprocation. I found it stripped of deception and subterfuge, offered honestly and wholeheartedly. And I found it with forgiveness and unconditional acceptance, in a friendship bound by time, loyalty, and a shared history.

img_3111_20150906And what a history it has been. Our friendship has spanned these many years since high school at Pisay, past bitter rivalry and devastating heartbreaks, beyond lonely separations and joyful reunions. From that very first time we met (I was 14, you were 13) to the day we started a new adventure as husband and wife, ours has been a journey of all good things born of our friendship. We made a family. We helped our sons grow. We built a home and set down roots into the deep, hard ground. We stood against challenges that would have bowed and bent many. We not only know each other’s life stories; we have written ours together.

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The heart has no wrinkles. 🙂

All this, and always with your hand in mine.

Today, 25 years to the start of our lifetime together, I am in awe at all we have done together. Thank you for always believing in us. Your unwavering confidence in the inevitability of us, your certainty of who and what we could be together, and your faithful, constant love have healed my wounds and changed me for good.

In you, I have found redemption every single day.

With you, I have found us.

Happy 25th to us, hon. I love you so.