Tag Archives: brothers

The Summer of Alphonse’s Smiles

22 Apr

My friend Mayet dropped in on us with a surprise for Alphonse the other day. It was one of my son’s favorites, a homemade flour-free rellenong bangus (deboned stuffed milkfish) that could be fried easily for his afternoon snack times. I knew Alphonse would appreciate the visit so I dragged Mayet inside to say hello, and lo and behold! Alphonse was in his birthday suit, heehee.

I can’t blame the boy. It started to sizzle in the city late in March, with temperatures slowly rising to the mid-3o’s (°Celsius). The other day, we hit 37°C, with no respite in sight. Yesterday was a degree cooler and we had unexpectedly strong rain (with hail in some parts of the island) so we slept better than we have of late. Still, we expect higher temperatures in the next couple of weeks as summer goes into overdrive. The boys and I are hunkering down for the long, hot summer. We stay in darkness or under the shade during the day so we can cut down electricity costs. We settle for electric fans during the day, using only airconditioning at night before Alphonse goes to bed. With a cold drink in hand and the almost-daily afternoon halo-halo, we manage to survive this heat wave one day at a time.

Alphonse does have it better than us. While Alex and I make do with fans and mist sprayers, he has a mini inflatable pool. We can’t set up his large pool (the one big enough to accommodate four large adults) because we need to conserve water so this will have to do for now. At least it gets him cooled down. Water play has always been his favorite activity next to blowing bubbles. 🙂 alphonse in pool We’ve had to let his hair grow a while now because of his ear problems but with the heat bearing down on us, it made sense to give him a short buzzed cut. He’s been tugging at his curls often these days, so even with the open wound on his ear, we went ahead and got him a hair cut. Alphonse summer 01 Judging by the pictures, he enjoyed the visit to the barber. His dad said he kept smiling and giggling the whole time. Props to his barber too, for getting it done really fast and without a fuss. alphonse summer 02 As much as the weather oppresses us with its searing heat, summer has its good moments. When the weather cools down in the evening, the boys gravitate to our bedroom for shared airconditioning. I like these times best, when the boys spend time together. Alex is often preoccupied with his usual pursuits- music, computers, chatting with friends- and Alphonse is so very far behind his big brother’s interests that finding them a common activity has always been difficult. There are times, however, when nothing needs to be said or done, when all that is needed is a touch or a hug to reconnect and strengthen the bonds of brotherhood.

I love that my boys, despite their ages, still have these moments. Autism, for all its difficulties and challenges, does have its gifts and this is one of them- a loving look that passes between siblings, even when both are fully grown. alphonse summer 03 If we continue to measure our lives by Alphonse’s struggles and successes, we do so because we are all he has. We make no apologies for that anymore.

This summer, just like the others that have gone before it, is another chapter we save gladly in our memories. We will draw strength and inspiration from it when the good times become difficult to remember. And until the darkness comes, we will soak in this bright, beautiful world that is Alphonse’s smile and be grateful that the light is here for a while.

Happiness is… (vi)

28 Oct

knowing that even when I leave this world,

Alphonse will always be in good hands. 

 

 “We are not only our brother’s keeper; in countless large and small ways, we are our brother’s maker.”

Comfort

26 Mar

Then...

I woke up this morning to find Alphonse missing from bed. It’s so unlike me to sleep through Alphonse’s movements so I mentally cussed at myself for not waking up in time. Blinking a few times in the soft light of the bedroom, I took a few seconds to adjust to the light. I had forgotten to take off my contact lenses last night so they were stuck to my eyeballs and blurry from almost drying up. I jumped out of bed, my heart in my throat, ready to run and look for Alphonse. A few seconds later, I did find him, safely ensconced in layers of beddings and linens. Apparently, Alphonse had suddenly awakened, decided to use the bathroom, and then went promptly back to sleep. In his Kuya’s (big brother’s) bed.

When the kids were smaller, this was hardly a rare sight. Alphonse sought Alex’s warmth in the early mornings, and little kids that they were, they would sleep entwined, arms around each other, clinging to each other till light.

And Now- taken just this morning

Now, they are both teenagers. Alex, at 17 and a year short of college, has began to carve his own space in this world. He has an identity separate from us. He comes home brimming with stories of his friends, of the people he has met, and of the places he has been. In the last year, particularly, we have seen him grow so fast that he is already light years ahead of his younger, disabled brother.

And yet, whatever else has changed in Alex’s life, one thing remains the same. He is and will always be Alphonse’s early morning comfort.

My Halloween Boys

27 Oct
halloween 04

Skinny Batman with bored sidekick

When Alex and Alphonse were little kids, dressing them in Halloween costumes was always a fun experience. True, the costumes they had 15 years ago seemed primitive and uninspired compared to today’s more intricate designs, but they were wearable, though not exactly cheap. Alex’s choice would always dictate the theme; if he was dressing up as Batman, then Alphonse would have to be Robin. If Alex was dressing up as Red Ranger, then Alphonse would be Blue Ranger. And if Alex was coming as Ash Ketchum, of course, he needed a Pokemon brother to come with him.

halloween 03

“Go, Go, Power Ranger!” Red Ranger shouts while Blue Ranger has to be dragged along

Sadly, Alphonse hated all his costumes. We couldn’t put a finger on it but something about the costumes- the fabric, the make, the style, we don’t know for sure- was driving him crazy. It was hard enough to put him in them, what with his squirming, whining, and crying. It was harder still to keep him in them. That boy could take off his clothes (underwear too) in three seconds flat, I swear.

When Alphonse turned four and was strong enough to kick the living s**t out of us, we stopped forcing him to wear costumes. Without a buddy to do trick or treating with, Alex lost interest soon thereafter. Sometimes, though, I could sense that he missed this activity too, though he was always quick to deny it. I remember the year he was in fourth grade and he had an elaborate costume of a gray and silver milkfish for a school performance. In the car on the way home, he was so hyped up that he said “Ma, this would be perfect for halloween. My friends and I can all dress up the same way and we could be a school of fish!”

halloween 02

With his precious smile

It was genius! I was about to agree  with him when he suddenly added, “Oh, yeah, Alphonse hates costumes. He won’t come with me. Never mind, Ma.” Nothing I said to him that day could make him reconsider his idea. He hid his milkfish outfit at the bottom of his drawers, much like a sublimated desire.

So when Alphonse put on his Roman knight garments for a school play years later, it was a time of joyous celebration. We loved this particular milestone so much that we still have pictures of it around the house. We have also used it on our family’s autism awareness campaign.

castle_ajpeg

This year, Alex had a costume ready for a school play he was writing and directing. When he learned that his little cousin Sese was going trick or treating, he volunteered to come along as an adult companion for the village kids. We knew he wanted to go and wear this particular outfit; he had been wearing it around the house for days, popping out of dark corners and frightening Alphonse’s nannies for fun. But we also knew that he wanted Alphonse to come with him too, to experience another Halloween together.

halloween 06

If all zombies were as goodlooking as this one, I’d volunteer to be eaten alive!

The only costume we could find in the  store nearest to our house barely two hours before trick or treat time was a zombie costume. We knew Alphonse would have issues with it, mostly with the thin strips of cloth that hung around his face. But we held our breath, crossed our fingers, and said a little prayer. Wonder of all wonders, Alphonse wore it with a smile. We were all so proud of him.

What may seem trivial to many “normal” families are exactly the things that define our life with autism. Each moment of happiness is precious; each challenge that we overcome is a source of pride. Halloween may be just another excuse to party, but for us, this year will be remembered long after other years have passed.

From the boys who missed ten years of trick or treats, they’d like to share this proud picture with all of you.

halloween card

The Other Son

9 Feb

Fifteen Years Of Alex

It seems only yesterday, when I delivered a scrawny little baby boy by emergency caesarian section. He was six and a half weeks early, a frail little thing who fit snugly in the small crook of my arm. He was the one who made me a mother.

Today, he turns fifteen, no longer a child, no longer my baby. Where before I would kneel down to look him in the eye, these days, I have to tilt my head up to look into his. I have to remind myself that this young man who stands tall and straight before me is the same child who slept on my bosom most nights, afraid to let go. Some days, I am the one afraid to let go.

On his fifteenth birthday, I wish for him the world on a platter, served sweet and succulent, and life in its fullest measure, sucked dry to the marrow. I wish him a million joys and a thousand successes. I wish him love, gentle and true. Yet, I wish him too the salt of tears, once in a season, so he will know grace in defeat and valor in fear, for a man unused to being broken can never be whole. 

Happy Birthday, Alexander. I do love you so.

~0~

The following piece was written for Alex on his twelfth birthday.

The Other Son

People often refer to me as the “mommy of Alphonse.” In part, it is because I rarely write about my other son, Alexander. In large measure, it is simply because they know me best as a parent and advocate for my child with autism.

Alexander is my neurotypical son; in autism jargon, this simply means that he is NOT a child with autism. He has a normal neural network that processes information and stimuli the way you and I do. In short, Alexander is normal. This is both a blessing and a curse for him.

For all his normalcy, Alex has always been a precocious little boy. He spoke at six months of age. At eight months, he could mutter words like “wower” for flower, “bobo” for ball and “boo” for book. By age one, Alex was no longer using babyspeak, though his lispy enunciation was so cute we didn’t bother correcting him until many months after.
Alex also learned to read much earlier than his peers. At age two, when other little boys were simply beginning to expand their vocabulary, Alexander was already sight-reading. His instinct for associating words with their written counterparts was uncanny. At three, he could read phonetically and, a few weeks after that, he read just about everything he could lay his hands on.

He could pick up languages too. After just a few hours of hanging around with his Nippongo-speaking little Aunt Mina (she was five, he was three), he was able to converse with her in a smattering of Nippongo and English. Today, even as his Nippongo-sparring partner Mina has returned to Japan, he still carries this love affair for the Japanese language in his heart and continues to hope for the day when he could finally go for formal classes in the language.

Yes, Alex has had it easy developmentally. While little brother Alphonse crawls and struggles for every inch of learning he acquires, Alex continues to learn in leaps and bounds. Yet, being “normal” has not always been an easy road for him.

Alexander carries a special sorrow in his heart, one only a sibling of a disabled child can understand and empathize with. He has learned to live with the knowledge that while he is not alone, he actually is. No other person can know what it is to feel like being an only child in a family of two children.

When Alex was much younger, he would take his brother’s hand and push, or pull, even bribe and cajole, his brother simply to get a reaction, any reaction. Many times, he was met with stony indifference; Alphonse would not even deign to give him a glance. At other times, Alex was pushed back so hard he would cry. Sometimes, when exasperated, he would shout “Alphonse hates me,” and run away, only to come back to my lap sobbing and asking why. We had the answers we were prepared to give: that Alphonse is different, that his brain is different, and that he could not understand many things we took for granted. I would hold Alex until his tears dried up, and when he left my lap smiling, I thought he understood.

Then one day, he suddenly developed a fascination for money. It was cute at first, the sight of a five year old counting coins and paper bills. We called him little Alex Keaton, after the business-minded, money-obsessed child from the nineties television series “Family Ties.” He asked us for an allowance, and when we agreed, would remind us dutifully when he was supposed to get his one-peso coin. He coaxed his grandfather to part with absurdly large sums (Alex specified that he wanted one thousand and fifty-two pesos). He played the “cuteness” trump card repeatedly and his aunts and uncles willingly donated to his cause.

By then, we realized that it was getting out of hand. Once, he had even asked a classmate in preschool for two pesos. Furious, I took him by the hand and demanded an explanation. His words failed him then, as silent tears streamed down his cheeks. “I was saving money to buy a brother,” he whispered in quivering voice. That day, we realized that autism had robbed this little boy of his dreams for a friend and a brother.

There have been many similar events since then. Of a frightened Alex crouching into a ball and hiding from a little wisp of a brother bent on wreaking havoc and destruction in our home. Of a tearful Alex patiently removing his brother’s tightly wound fingers from my hair. Of a persistent and relentless Alex forcing his brother to hug him, and being rebuffed again and again and again. Of a heartbroken Alex woefully shedding tears when Alphonse would chew on his books and Yu-Gi-Oh! cards or bite the head off his action figures. Some were extraordinary events, and some were everyday little things that ate at his heart. These were, and are, autism’s curses.

“Was it ever my fault, mama?” he asked me once of his brother’s autism. He remembers, surprisingly well, how when he was a toddler and his brother was a newborn, he would bite his brother’s fingers. Alphonse would howl in the inconsolable way newborns have, and curious Alex, not knowing any better, would try again. He remembers these with a twinge of guilt, as if his toddler’s mind could grasp the complexities of sibling rivalry. He had carried this guilt for many months, he said, and could bear it no longer.

“Of course not!” I emphatically replied. I assuaged his guilt and remorse and explained how autism cannot be explained by one single event or circumstance. It is precisely this nature of autism that makes it difficult to understand, difficult enough for adults and even more incomprehensible to children.

One afternoon, a few summers ago, after a long and tiring day babysitting Alphonse at home, Alex cryptically uttered, “Sometimes, I wish I had autism, too.” He looked at me with sad, wan eyes and continued, “If I were autistic, I would understand Alphonse better. Then he won’t be alone in his world. He’ll have me and we can be friends. He’d love me then for sure.” Before I could reply, he dashed off, with one finger poking his eye in imitation of Alphonse. “Whee, Alphonse, here comes autistic Kuya (big brother)! I am special, too!”

What does one say to that? I could not find the words to tell him that his love for a brother who didn’t know how to love back was an incredible gift to us. That his heart was a gift. That HE was a gift. I ran after him and hugged him tight.

Alexander is 12 today, on the cusp of manhood, yet still on the fringes of a short-lived childhood, much too short, perhaps. Living with his brother, he has had to grow up and mature faster than his peers. He has had to take responsibility for a person other than himself at a time when his own definition of self has not been cast in stone.

He has had to learn patience early on for a disabled brother who did things slowly, if at all. This gracious acceptance that being different isn’t bad at all has strengthened his tolerance and sensitivity for other people’s differences. My son knows no prejudices, and I am most proud of him for that.

And my son knows love. Love for someone who loves him now, albeit in a different way. Two years ago, Alex said, “I think Alphonse has learned to love me.” Alex’s persistence finally paid off. He must have been rebuffed a million times, but he didn’t give up. He kept at it, day in and day out until one day, Alphonse snuggled close to him, willingly, without reservations. Alex almost exploded with joy.

Maturity, acceptance, tolerance, and love. These are autism’s blessings.

I write now of my son Alexander, love of my life, pride of my heart. Too soon, I will have to let my son go to let him find his wings on his own. Already, I feel him pulling away from us at times, and it scares me. Today, however, while he remains a child, I want him to know that he is loved, as loved as his brother and more, and that he is special, too.