Collateral Blessings

(Or How to Turn Crappy Days into Gratitude Days)

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

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

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

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

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

Sylvanian Families Collectors PH is ❤️

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

And then disaster struck.

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

To illustrate:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

These are the blessings that sustain us each day.

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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. )

Raising a Child with Autism: Parents Speak

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!

“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! 🤪

Hair-Trigger Meltdowns

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

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

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!