Tag Archives: Kids

His Mama’s Name

9 May

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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Raising a Child with Autism: Parents Speak

23 Mar

Three weeks ago, I was invited to be part of a seven-member panel of parents for a forum on raising children with autism. Organized and sponsored by Kaakibat ng Autism Society Philippines Multi-purpose Cooperative (KASPI-MPC), the forum was spearheaded by its hardworking President, Ms. Josephine Palomares, and was open to both members and nonmembers of the cooperative. Ms. Mayang Pascual facilitated the discussion and helped us get comfortable with the exchange and sharing. I was joined by one father and six mothers; our children’s ages range from 10 to 49. Each of us had at least one child in the spectrum.

I am grateful to Jo and Mayang for allowing me to share parts of Alphonse’s journey with the audience. Our story has often elicited sympathy, if not outright pity, from those who have never met Alphonse. Sure, our life is filled with meltdowns, with aggression and self-injury, with daily challenges that continue to confound us to this day, but Alphonse’s story is also a story of hope and perseverance amid a mountain of difficulties. It is a story of grit and love. And while it is important to hear those not-so-rosy parts to give people a “real” view of what autism in the far end of the spectrum is, it is equally important to recognize Alphonse as one who struggles bravely to master himself and his environment resolutely.

(Photo credit: KASPI-MPC)

We were asked to prepare a short introduction of our children for the audience. We were also given a shortlist of questions to help us prepare for the question-and-answer style of the forum. Below is the introduction I wrote, and some of the answers to the questions I was asked. It is my hope that parents who read this find encouragement and recognize that their love and acceptance can open up their child’s world.

Alphonse is exactly 23 years and 3 months old today, and yet, for all the years he has lived, he remains very much a child in interests and behavior. He loves Disney musicals, Ava and Dave, and Princess Sofia. He is afraid of the dark, of fire, and of spiders. On hot days such as this, you can almost always find him playing with a large basin and a hose. He jumps in his big trampoline when he feels like it or paces around the house, but you’d most often find him in the garage, sitting in his plastic patio chair, blowing endless bubbles.

“Blues brothers cool!”

Alphonse lives a solitary life with his parents and brother. He has no playmates or friends. He hardly goes out because crowds and noises overwhelm him. The closest person to a friend he has is his older brother. Together, they hang out in the schoolhouse aka playroom aka boys’ pad, Kuya playing with his consoles while Alphonse watches or blows bubbles beside him. Despite this, he is a generally happy fellow, sweet and lovable. He loves to sit on his dad’s lap. He helps his mom adjust her glasses when it falls off her nose. And he follows Kuya everywhere, even to the toilet, where he sits by the door and patiently waits.

“Aarrr, I am cutie,” says pirate Alphonse, with his hook nose and nasty snarl. Argh!

To many, Alphonse may seem to live a limited life, holed up within the four walls of our home. The happiness Alphonse shows, however, proves that he is exactly where he needs to be, doing exactly what he wants to. He is at peace, and, as a result, so are we.

Q: When you found out that your child has autism, How did you feel and what did you do to deal with the situation? Did you have a denial phase?

A: Alphonse was diagnosed at 18 months of age, a few months after we began to notice that he was no longer talking. I think the period between recognition and diagnosis was my denial phase. Back then, there were days when Alphonse seemed connected to us, making acceptance difficult, if not impossible. I dealt with the denial by burrowing myself in information, trying to convince myself that what we were seeing had some other possible explanation, something other than autism. When the developmental pediatrician gave us the diagnosis in no uncertain terms, denial was no longer possible. What came next was a period of grief and guilt, of wondering how and what I could have done to change the outcome of things.

Q: What challenges did you face or are currently facing now at this particular stage?

A: Alphonse is 23 and is a young adult. Were he neurotypical, he would have graduated from college by now, be employed, perhaps even have a girlfriend. Today, he is a man-child, someone whose interests are limited still to childish pursuits, and yet he is physically and physiologically a full grown adult male. The greatest challenge we face these days is trying to reconcile his physical strength to his cognitive abilities. The disparity is so great that it has caused our family difficulties, especially during his periods of stress.

Q: What were the kinds of interventions you employed and what were the most effective? Did you undergo any difficulty engaging those services?

A: A few days right after diagnosis, Alphonse went to school for early intervention. We did the usual- sped, speech, occupational therapy. As he grew older, we added additional services such as play and aqua therapy. We changed and supplemented his diet. His behavior started to deteriorate when he was four, causing concern and reluctance in some institutions to allow him enrolment. For many years, Alphonse could not be accommodated in group therapies and received one-on-one intervention. When he was nine, we made the decision to home school him. That, I think, has given us a better outcome, albeit it has not been a perfect one.

For us, ABA was the most effective way by which Alphonse learned. Today, however, because he is slowly manifesting a greater desire to participate in relationships, I feel that the Son-Rise program is also helping us make headway in acquiring his full trust.

Q: What were the big & little victories of your child and what were the personal breakthroughs that you had or are presently having?

A: No one knew Alphonse could read. We never even tried to teach him because we got stuck in the alphabet. Whenever teachers would try to read him books, Alphonse would grab the books and rip them to shreds. We noticed, however, that whenever we would read aloud to his big brother, Alphonse never left the room. This was the time Harry Potter was really big and my eldest son was so engrossed in it. On a whim, we decided to ask Alphonse questions about the book and give him choices written in paper. He gave us the correct answer each time.

I wish I could tell you that this was the magic bullet that solved all our challenges. Alphonse’s difficulties are so severe that moments such are these are few and far-in-between. Yet each time he looks at us, comes to us for a request, asks us of anything, that I feel is already a breakthrough because it goes completely against isolation and everything his autism is.

Q: How did having a child with autism change you & your family?

A: I have to admit, Alphonse was and is the center of our world. I wish I could undo that, for my eldest son’s sake, but that is done and nothing can change that anymore. Perhaps that’s one of the few things I would want to change- to not be so caught up in autism that everything else in our lives became secondary, sometimes even our own personal needs and desires.

The best thing to come out of my son’s autism is that our family has become stronger and more united. I’m sure a lot of families can identify with that but our son’s difficulties have taught us that we are stronger than we think we are, that there is nothing that can bend or bow us as long as we love each other.

Q: What are your aspirations for your child and how do you plan on making that happen?

A: I am still working on giving Alphonse his voice, so no matter how old he is, we have not stopped his education. As he grows older, I have learned to modify my expectations and not set his value based on what he can do or not do. In the end, I just want him to be happy. To know that he is always loved so he need not hurt others. To find peace in his body and mind so he will no longer hurt himself.

~0~

My grateful thanks again to KASPI-MPC, and to all the other parents who shared their experiences with us. I learned a lot from all of them; their willingness to teach and share what they have learned in their own journeys is a gift to those who follow in their footsteps. To Max, Doris, Imee, Ma’am Emma, Dr. Lirio, Ma’am Carmel, and to Jo and Mayang, God bless you all!

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“Not The Mama”

7 Mar

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

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

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

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

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

I laughed so hard I almost fell off my seat.

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

Then again, do I give him nightmares? 🧐

Update:

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

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

Alphonse: (shaking his head) Eh.

Me: Did you have good dreams?

Alphonse: (shaking his head again) Eh.

Me: Did you dream of Mama?

Alphonse: (nods sadly) Ya.

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

Hair-Trigger Meltdowns

27 Feb

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

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

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

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

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

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

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

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

It’s back to the playroom for now.

Present and Accounted For

25 Jan

I’ve been trying to think of a word to describe how Alphonse has been in the last month or so, but no matter how I rack my brain to do it, nothing seems to fit. Aware? Conscious? Sensitive? I find myself at a loss for words. Somehow, these don’t seem apt at all. Then too, if I use them, do they betray a prejudice against individuals with autism by attributing them with the lack or absence of these traits? Alphonse is certainly aware, conscious, and sensitive of us and his environment; if at all, he is painfully burdened by an over-awareness of everything that goes around him. Perhaps the word or words I am looking for are more related to a perceived emotional distance, an aloofness that disconnects him with other’s intentions and motivations.

And yet, today, even as I write this, Alphonse seems more here, more present with us these days. I can’t explain it at all. I don’t know why or how, he just is.

He tries to reach out more often, making himself seen and heard. Would you believe that we’ve been able to have conversations with him- funny ones at that? Despite his inability to communicate through spoken language, he has managed to make his responses understood. There is also a remarkable degree of restraint in him these days, something we have not seen in a long while.

Consider this.  When his nanny absconded early last year, despite a promise to return (with an advance on her salary, a paid-for return airplane ticket, and a borrowed cellular phone), Alphonse didn’t break out in tantrums right away. We had given him a social story on his iPad to read before and during his nanny’s absence. I made sure to include a calendar marked with her vacation days. Three days after she was due to return and with news that she had eloped, Alphonse finally had that full-scale meltdown. He pulled our hair, threw all our borrowed dining chairs, and even tried, on several occasions, to bite us. It took about a week before he calmed down.

Knowing his reactions to loss, we resolved to make the next transitions smoother. With our previous successes with social stories fresh on my mind, I worked on poster pictures for Alphonse, giving him copies on his iPad and printing out some to post on the walls. I even kept copies on my mobile phone so would always have them on hand and ready for viewing. We showed the pictures to him every day, and after about two weeks, he began to really understand what they were for.

No pulling hairWhen another nanny informed us of her plans to “retire” soon after the others, we redoubled our efforts at showing him these pictures. Three weeks before his nanny left, I gave him another social story, a goodbye book to prepare him for her departure. We took pictures of his nanny waving goodbye. We told him she would not be coming back, but that she would keep in touch through Facebook and phone calls. On the night he first read the book, Alphonse shrieked and yelled in heartbreak. With tears streaming down his cheeks, he proceeded to throw what he could lay his hands on BUT he did not pull our hair. When I ran toward him to comfort him, he sobbed even louder, burying his head in my shoulder. I noticed his hands were clenched in tight fists. He had clenched them so tightly that his hands were bright red and his nails had dug marks into his palms. That was when we began to realize the extent of his self-restraint (no pulling hair, Alphonse!) and his new-found understanding of what he may and may not do.

That he’s been more attuned to us continues to be a source of our amazement and joy. We ask him questions and surprisingly, he gives us answers. The easiest questions are those he can reply to with a nod or a shake of his head. Of late, he has also started verbalizing more, often accompanying his nod with a “Ya” and the shake of his head with a “Na/No.” Even more amazing, he would say “Ayaw ayaw ayaw” (I don’t want to, I don’t want to, I don’t want to) when pressed into doing something against his will (like bathing with cold water, heehee). When presented with choices, it’s comforting to know he knows what he wants and can often choose to his satisfaction. Little things to many, but for one who has never had his own voice, they certainly mean a lot.

Just this New Year, on the way to lunch with the rest of the family, we asked him what he wanted to have for lunch.

Do you want chicken? Na.

Do you want pizza? Ya.

Shakey’s? Ya.

Pizza Hut? Ya.

Yellow cab? Weh? (He’s never had Yellow Cab Pizza, I forgot.)

Poor thing. We ended up eating at Max’s Fried Chicken because Shakey’s was closed and we didn’t want to take another stab at finding parking. It took a while before his gloomy face brightened and only after we bribed him with a whole Max’s fried chicken. Still, it makes us happy to know he has opinions and choices; we only need to find a way to help him bring them out in the open.

I can only imagine what the future has in store for us and for Alphonse. But if this is any indication of what we can expect, then we shall see Alphonse evolve and continue to grow as he ages. All children grow, and children with autism are no exception. But Time, it seems, is what they need the most of.

For now, it is enough he is here, present and accounted for, struggling against the mighty wall of his disabilities. We shall continue to arm him with the picks and axes he needs to tear down these walls. Time, I pray, will do the rest.

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Alphonse at 20

3 Nov

Alphonse newbornTwenty years ago, at six am on All Saints Day, I woke up to the feeling of wetness on my skin. I was hugely pregnant and bloated on my 37th week, but my delivery date, which was supposed to be a scheduled repeat Caesarean section, was still more than two weeks away. On that morning, however, as I dragged myself to the bathroom with fluid leaking between my legs,  I knew that this baby was not going to wait two more weeks.

Less than two hours later, I was in the labor room and my contractions were coming steady, strong, and in increasingly shorter intervals as the hours wore on. I never went into labor with my first son, so it was a novel experience, albeit an excruciating one. I remember looking at the clock very often, counting the minutes and hours till they could wheel me out to the delivery room, and trying to distract myself from screaming through the pain by watching television through squinted eyes. (I had no eyeglasses and the nurses made me take off my contact lenses; I was almost blind.)

At four in the afternoon, my labor was suddenly halted by tocolytics injected in my intravenous line. November 1 would not be my delivery date, my obstetrician had instructed in a phone call. My repeat C-section would take place two days later, on November 3.

And this was how Alphonse came into this world, two weeks early but also two days late. That his earliest days were marked by indecision and confusion seemed eerily appropriate as it foretold a lifetime of straddling worlds- his and ours.

Today, Alphonse turns twenty. This year is especially significant as he chucks off the last physical vestiges of childhood and adolescence and steps into adulthood. True, his cognition is still that of a young child, but the world sees him as a full-grown man now, and were he any other young man at the cusp of his life, we would be planning careers instead of carers.

Twenty years of Alphonse and twenty years of autism. That one cannot exist without the other is no longer a source of our grief or shame. We have moved beyond the sorrow, the guilt, and the blame, to a point where only Love exists. We have made peace with the fact that autism will be our constant companion for the rest of our days. While it has made our son’s life- and ours- difficult, it has also woven and bonded our family into a formidable force that protects and loves Alphonse unconditionally.

Indeed, we have lived through much. But our joys have also far exceeded our sorrows. We have learned to appreciate life more keenly, to value the seconds and treasure them as if they were our last. We have learned to be grateful for every little smile of our often long and tiring days. We have learned to work together, to trust and support each other, even when other families have been torn apart. And we have learned to accept and love each other for all our weaknesses and frailties, knowing that our strength as a family trumps any of our individual failings.

Today, on Alphonse’s 20th birthday, I must admit we still have many of the same questions we had when we first started our journey with him. Who is he? What does he really want? How will he be ten, twenty years, from now? The truth is, we don’t know the answers to these still. Just like any other child, his is an unwritten future and we can only guess at them for now.

The only difference between then and now is this: the certainty that whatever happens, we will go through them together. Alphonse will never walk alone.

Alphonse and mama 02

Happy birthday, dearest one! Mama, Papa and Kuya love you always!

 

Sons and Connections

26 Apr
Alex- back when just holding on was love2

When holding on was all it took to feel loved

One Saturday afternoon when Alex was eight, I heard a loud scream coming from the kitchen. I was still upstairs in the second floor and startled by the cries, I ran down as fast as my feet could carry me. I had Alphonse tucked in one arm, flailing helplessly. When I got there, I saw Alex cradling his right arm and crying in pain.

Later, after his wounds were dressed in the hospital emergency room and his crying had subsided into soft sobs, Alex told us- his dad, the doctor, and me- how it happened. It was almost lunch time, he said, and he was already hungry. He could’ve asked me for help but he knew Alphonse was having a bad day. He could do it himself, he thought. So, he grabbed a stool, stood on it to reach the kitchen countertops, and with his right hand, lifted the cover of the rice cooker. The steam from inside the cooker gave him second degree burns. Within minutes, his arm had puffed up in large blisters.

At that moment, as I responded to his aid, I realized how hard Alex had always tried to be independent of me. At five, he learned to bathe all by himself. He learned because Alphonse kept running away from the bathroom for their joint baths and he was usually left alone to finish the job by himself. (I had no help most of the time, and joint baths solved the problem of bathing the boys without leaving Alphonse unattended). At an age when most young children still relied on their mommies or nannies to wash them after going to the toilet, he was doing it by himself, unassisted. I didn’t teach him many of the skills he picked up then- folding sheets, packing away pillows, eating alone- because he always just tried very hard not to be in Alphonse’s or my way.

Alex- before there was alphonse2

Before there was Alphonse

I knew Alex needed me then but Alphonse always seemed to need me more. And so in one fashion or another, I passed off his needs for a later time, for when Alphonse was in a better mood, or sleeping, or preoccupied. Too often, by the time those moments actually came, Alex didn’t need me anymore.

I write this because I am thinking of Alex right now and trying to analyze where and when I could have done better to see to his needs. He’s been having some rough days of late, to be honest. I sense his real need to be severed from my apron strings, but I also sense that he still needs me, or at the very least, wants to need me. Sometimes, though, no matter how hard I try to reach him, he’s not ready to be connected to me again.

I can’t write of Alex the way I do about Alphonse, where I don’t spare any details and give everyone sideline seats to our lives. He has always been very private and expects me to respect this privacy. But I think I need this to be spoken out loud; I need to acknowledge the difficulties the special circumstances in our lives have brought us, and consequently, him. I pray that when he is ready, he realizes that I have stopped putting him off for later, that there is time for him NOW, however late it may be. And I hope he knows that I am just waiting, without judgment or prejudice, and always with love.