Our One Day

"I love you,"
"You yuv mee."
"We're a happy family"
"Wee a gey bee huh"
"And a kiss from me to you"
"Won yoo say"
"You love me..."
"Choo.."

Today. I sing the first line of the ever famous Barney song. Garret sings the second line. And so on and so forth. We are lying on the bed on this rainy afternoon, my left hand holding his and we are singing. Together. Wait, let me rewind. Let me repeat that in case you missed one crucial point-- Garret is singing the lines, actually verbalizing the words. We finish the last notes of this song and my heart is twisted in knots marveling at how far my little prince have come.


July 18, 2013. Three weeks ago. My little Prince said the most beautiful word to my ears for the very first time. "Mama". When he said it three times, yes not just once, but one, two, three times, my world literally spun that I didn't know where to put their bug spray and their bag. I was stupefied, amazed, awed. All the synonyms of that emotion that leave your mouth hanging open and heart bursting at the seams would pretty much describe how I felt at that time until now.

I have heard too many testimonies of how when mothers saw their children for the first time in their arms, they cried and felt that one unbreakable bond in an instant. And even more stories of their children's first words at 10 months old or younger. Words as significant as "Mama". When I gave birth to Garret, all the testimonies and stories I heard remained just that-- narratives to me. Of course there is no question, I love him with the whole weight of the universe but somehow I couldn't connect to him the way I expected to. I don't know if Autism caused this "disconnection" that I so deeply felt but wanted badly to deny, maybe it did. And when the months went by until he turned 3 years old, when still no "mama" or "papa" was heard from his lips, questions began to pile up in my head and in my heart waiting to be hurled to the universe of which no answers were heard as well.

From the time Garret was then diagnosed at three years old hence, and a slew of therapies and special education commenced, life began unfolding in ways I could not even predict or sometimes even understand. What was clear in the years that have gone by was the one undeniable truth of how my little prince was teaching me the ropes of life. And not the other way around. Acceptance. Gratitude. Courage. Strength. Resilience, And Love above all. Among the questions that piled up was the one that bore the heaviest load, "Why Autism? Why my sons?" I only have to look at my Garret and my Morgan and see the joy in their faces at the simplest things and see the courage in the full breadth of their souls to face everyday hurdles in living in this normal world of ours and I find the answers I am searching for.

To be honest, my faith has seen countless days of wavering strength. Frustration came in all forms. Anger directed at the universe of the "unfairness" of it all. More questions--"Why couldn't my son still not talk? Will I have the strength to carry on?" How did I get through days like this? I just let go. I asked the hard questions and allowed myself to weep and be angry. And then when everything that was toxic and dark and not good went out of my system, I gathered whatever strength there was left and pooled the support and love of friends and family and used it to support my weight long enough to stand on my own two feet again. "Mama said there'd be days like this. "

And days of bliss...

Just when I was about to give up, the tide turned. Our One Day came. Let me tell you the details of what transpired the day my world spun:

I was blow-drying my hair, getting ready for school a.k.a. work a.k.a. teacher-momma mode. And in the mirror, I saw Garret approach me, wanting me to be done with whatever I was doing because he wanted to go already. I turned off the blow dryer and looked at the mirror, I cupped his face and said, "Look, Mama and Garret." I pointed to our faces in the mirror. He then said, nonchalantly, "Ma-ma". I was dumbfounded so I brought him outside and told his father, "He said, Mama." His father said, "Maybe it was ma-na (finish in our vernacular), as in he wanted you to finish blow drying your hair." I told Garret this time, "Garret say, Mama." To which he said, "ma-ma". I requested that he say it again. And he said "Mama" Twice. And that was when my world transformed into a roller coaster of joy and tears.

8 years. A slew of therapists and therapies. One word. "Mama." Miracles happen. Breakthroughs are possible. The Universe certainly knows what it's doing.

As I am typing this now, Garret approaches me with his pack of biscuit. He says, "A-ma Bea, O-wan." I open his biscuit and hands it to him, I cue him, "Tha--" He continues, "Chan-chyu."

Mama Bea. Open. Thank you. Five words. And more coming.

It has taken me a long time to write about this fateful day. Because I wanted to give it justice by writing it when all my senses are attuned to celebrate and laud my little prince. Because as much as this is about him saying the word that fills my heart with the greatest joy and content, this is about him breaking through one seemingly unbreakable wall of autism. One being this wall of apraxia that afflicts most kids on the spectrum. This is about my little prince Garret's courage and strength. This is about him experiencing the world as never before, being able to communicate, to explicitly express himself. One day, it won't be his mama anymore telling his and his brother's story. One day he will tell you himself. One day, Morgan too will tell his story. And I believe this with all my heart.

And this day wouldn't be possible at all without the love and dedication of his therapists, teachers and doctors and the unfaltering support of family and friends. I thank all of you. You know who you are. I will be forever grateful for your kindness and love you give to my boys and my entire family.

In the meantime, we continue to do what we always do. What my boys have taught me to do, live each day as if it were the first and last day of life, give it my all, do whatever it is that lights my fire, appreciate every single blessing, see everything as miracles and know that no matter what happens, hope is not lost.

And on this note...

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all...

-Emily Dickinson-

Lastly, as if I would forget the one who is looking down on everything perhaps in utter amusement at my lack of faith and human questioning, maybe even saying, " I told you so.", thank you, Universe.

Khalil Gibran and the Reality of Autism

A father's toast to her daughter on her wedding day. So wonderfully, eloquently delivered to guests of 300 or so. Maintaining composure all the while fighting back tears with the realization of how powerfully true Khalil Gibran's words were.

On Children
Kahlil Gibran

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable

The first time I read Kahlil Gibran's The Prophet, I was still 22 years old. With all the youthfulness, idealism, excitement and immaturity of that age. I read it and was moved at the poetry of such words. How truth was elaborately worded out in such language! When I read the above passage at the time, I felt a connection with it almost immediately because of how my papa and mom raised me. Never once did I hear them impose an ambition on me. Never once did I feel that I had to be this and be that. They let me be my own person, make my own decisions and face the consequences of those decisions. For better or for worse. And I will always be grateful for them for being that way.

Through many discussions, my mom and I talked about how one of the many wonders of bringing a child in to this world is to ironically care for him, feed him, clothe him, love him as he needs to be loved. And yet, and this is where the irony enters, when he grows up and is able to make his own decisions, stand on his own two feet, literally and metaphorically, you need to let him grow his own wings. Let him explore the world on his own, make goals and dreams for himself, let him work for it, let him live out the values instilled in him and let him face his own failures and successes. So what else can a parent do? What else can a father or mother do? Their roles transform from that of being a caregiver into a soul-giver. A parent becomes a safe refuge, a coming home haven, that no matter what happens, whenever the child needs solace and rest, he can always come home to them, whatever the child's or adult son or daughter's soul needs--wisdom, insight, inspiration, renewal of strength, love, hope, faith. At 22 years old, in many of my aspirations, I looked forward to having children of my own and letting them be whoever they want to be in this world. And I had this concrete picture in my mind of how things would play out.

Of course, things never turn out the way we expect them to turn out. At least not in the way we think. There's a higher power at work.

The second time I was reminded of Khalil Gibran's words was at a relative's wedding, July of this year. And I was jolted from my senses. How differently it impacted me right now compared to 10 years ago.

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

When I attended an international autism conference two years ago, in one of the plenary sessions on socialization, a parent asked the speaker,"Will our children ever have a chance to marry and have a family of their own?" The speaker responded in a light manner, "Well, the challenges of marriage for normal people are hard enough, how much more for them?" At this, the audience released a series of laughter, of amusement, of nervous realization of reality, of relief? I don't really know which was which. In my case, it was an admission of one of the realities of autism. Looking at it in a positive light, I see it as having that simple comfort that I now have somebody to hold hands with till the end of my days. A life partner in my son. On the starker side of reality, the letting him grow wings, exploring the world on his own, having a family and children of his own, does not seem to be part of the scheme of his life. I have mixed emotions about this. And I am trying to sort it out as I am typing right now.

Sad. I am sad because I so looked forward to letting my own child aspire great dreams, work hard for it,find his passion, find a job that suits his passion, meet his soul mate, marry, have children of his own. I was eager to raise him the way I was raised by my own parents. I looked forward to letting him be his own person, able to withstand the challenges of the world and face it head on, and channel his strength to his family.

I feel enlightened. Is enlightenment an emotion? I think not. Let me try again. I am enlightened. By the fact that my definition of joy, fulfillment and contentment is largely influenced by what society thinks it should be. Whoever said, that the only way to be happy, fulfilled and contented is to follow the "normal" path, is seriously in for a perspective overhaul. I am in for a perspective overhaul. Everyday it seems. A voice deep down inside me is admonishing me that letting my own child grow his wings, exploring the world on his own, being his own person is happening right now as we speak. Everyday I am looking at my little prince doing exactly that. The only difference is that I have the chance to witness it literally everyday. I have to be there. Because Garret needs me to be there for him. To protect him. To care for him. To love him as he is. To let him grow his own wings. Maybe not in the way I mapped out 10 years ago. But in the way the universe wants him to.

I bore my little prince for nine months but he does not belong to me. He is the very manifestation of the universe, of life longing for itself. He is the angel assigned to me by the heavens. I brought him into this world but not for me to own him. But for him to teach me what life is really all about-- Surrender. Letting go.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

I am here on this earth to give them all the love a mother can give. But I cannot teach them to look at life the way I see it. Garret and Morgan teach me everyday to be more patient, to be more brave, to be more kind, to be more resilient. I have to strive to learn the lessons they are teaching me through their own persons. I can only show them the way a parent can. But it is up to them to carve their own path. Whatever the universe has planned out for them, will be. And so be it.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

Even as autism breaks to us this reality that our children will always need us literally, until the very end, in between now and the future is what is important. There are lessons to be learned, values to be lived out, lives to be enriched not just our own but the lives of other families. Even if my boys may never follow the path that normal society dictates it to be, they will reach far. They are their own persons. And what is my role? I am a caregiver and soul giver. Always. Until the very end. I am the bow from which my boys will soar wherever the universe may take them. Whatever angle the heavens may bend my strength so that my boys will reach far and wide. I have to be a rock , hard and unmoving and be like the flowing water all at the same time. I have to be the bow that the heavens will bend so my sons will reach their true potential. And at the end of every day, I have to trust in that higher power that he loves my boys so much to know what he is doing. And I have to have faith that he loves me as well. Especially through the toughest times.

So back to that wedding toast. At that moment, it seemed as if I was frozen in time as I listened to every word the father intoned of Khalil Gibran's wisdom. I was no longer awed merely by the beauty of the poetry that struck me 10 years ago. I was moved at how powerfully real his wisdom was...My boys are not my boys. They are of the universe. I am a parent, but I do not own them. I am a caregiver and a soul giver until the time they need me to be. I may not be able to make that toast that a mother gives to his son on his wedding day, but it's okay. Garret, my little prince and Morgan, my feisty king will be whoever the universe wants them to be. This is what joy, fulfillment and contentment means, after all.

Thank you Khalil Gibran. Thank you autism. Thank you universe for giving me Garret and Morgan.

Days Like These...

It's just one of those days where I'm in the "why" zone. One of the many moods and zones I go through being an autism mom. Right now I don't even want to call myself "warrior mom" as I profess myself to be. I'm in that place where nothing seems to make sense and I am on the verge of having a nervous break down even if I don't have time for it. And even thinking that I am still blessed and fortunate than many others, does not even seem to change my perspective. Judge me if you want. It doesn't make autism go away anyway. I am just asking the question, "why?". Why my boys? Why the task avoidance, why the frustration tolerance? Why the heightened sensitivities? Why?

"If your path is more difficult, it is because of your high calling." I read this on an fb wall of a fellow autism mom. And she commented to this effect, "Is there such thing as a low calling? Because if there is, I would very much take that over anything else right now." This exactly what I feel right now. If I could just scream like hell into a pillow or an empty room in the hopes that some logical answer might come. By logical I mean, something that could radically shift my mood, alter my "why" zone right now into the "What can I do about it? Because I will do it because I'm a warrior mom" zone.

Last night as I rocked my feisty king in the rocking chair so he could sleep, for the first time in a very long time, I prayed not for strength. I prayed for help. Literally asking all the angels looking out after us out there to help me. Because my load is too heavy. I did not ask for a strong back but for the load to be lifted literally off my aching tired shoulders. I am not complaining. I am just saying that I am tired. So could somebody, anybody, out there please help me? Because I cannot do it all. I cannot keep it together all the time. I cannot always find a reason to be grateful. I cannot always see the blessing behind the ugliness of autism. I just cannot. My prayer was not even that of letting go and letting the higher power do its work. My prayer was a demand to the heavens that please, if you could just spare me a little help down here, do something!!!

I'm a bit ashamed of what I am going through right now. Because there is so much to be thankful for. And I always have a choice-- to focus on what breaks me or what holds me together. I know that in my head, a bit too much, and in my heart, all too well. But you know how it is, knowing is different from actually doing it. Applying the theory, because of so many variables. So what else is there for me to do right now? Nothing. Because there is nothing I can do about autism. It's there. It's something I deal with, we all deal with everyday--tantrums, meltdowns, manipulative behaviors and all. I forget, there is one thing I can do just like what I did last night. Take out all the human variables and reasoning and logic. and Pray. I can pray.What to pray for? I don't even know anymore.

Can you pray with me and for me and for all the autism moms out there? I hope you do because we need all the answers we can get especially to the questions why, what and how. Why Autism, What can we do about it and how do we carry on? Prayers move mountains, my mom constantly reminds me. I know this. Maybe it's time I stop the knowing, the logic, the reasoning and start doing. And start praying.

Because maybe this thing that moves mountains will get me back on track and radically revert me back to my "warrior mom" mode. And I think I should stop the "maybe" thing going and start believing. Faith, yes, what I need right now, especially on days like these...

Acceptance: Love, Let Go, Have Faith.

Many friends have often told me how they commend me for my attitude and acceptance towards my son's autism. And every time this happens, I respond to them how acceptance is an everyday process for me. It didn't happen overnight. It certainly didn't happen in a blink of an eye or a surge of will. It is an everyday habit, a consistent practice of will, an opening of the heart and mind, a certain fortitude, a decision to let go and let the universe do its work.

This afternoon, I was confronted with something that for the first time, I was speechless, stopped in my tracks and could only reply, "I know and I understand how you must feel." It was a declaration of the reality of autism, its mystery, its incomprehensibility. It was a raw admission of human emotion, human frailty. And it made me ask the question myself, "How do you accept autism and all its reality into your family? How?"

All the research, resources and references read cover to cover could not satisfy the question of why. I am not even talking about the causes of autism. Because the literature is already out there-- genetic vulnerability coupled with environmental elements. I am talking about the real question parents ask the universe, "Why us? Why my child?". Before we even get to the "how" part-- how to deal with it, how to manage our child's behavior, how we'll get through the financial burden of therapy, schooling, doctor's tests and check-ups, we have to confront the universe, and ourselves, with the question, "Why???". And most often than not, we come up with no answers.

Sooner or later, we find out that we have exhausted our mental capacities, our heart and soul from endlessly questioning that our head literally hurts like hell and all our senses dead tired. We find out that there are no understandable answers, no logical reasoning--it simply does not make sense at all. And the insensibility of it all breaks us down, knocks down the walls of our defenses until we are on our knees. What do we do then when we fall down on our knees? We raise our hands as a gesture of surrender to the heavens. This is when the answers come.

I have often relayed to parents, mothers and fathers alike the story of Garret's diagnosis, how we reacted, how I particularly reacted, how my partner responded, how we didn't know what the first step to do was, which professional to approach first, how we had to travel to another island to see qualified doctors, how Garret screamed with all his might during his first plane ride, and most importantly that point where the doctor finally gave the diagnosis. After the diagnosis, I narrated to them how we did what we did-- do all the intervention needed for him, contacting a therapist from another island to travel every week for 1 whole year and how we dutifully followed through with the intervention. Along the lines of narrating to them our story, one question remains unanswered, "What made you accept the truth?" I have no concrete answers for them. It is not a yes or no kind of question after all. "Was there something you did to make the truth easier to swallow?" All I could answer to these questions was, "When the doctors told us, we knew this was it. We had to help our son. We knew right then and there we were going to do everything for him." And it's true, after finding the most reasonable way to have Garret's therapy, the rest was history. So when a parent declared to me this raw admission of truth--" It is so damn hard to accept why my son has autism" statement, it was as if someone just punched me in the face and forced me to recall how truly have I come to accept autism in our lives.

I do have one concrete answer though. Although this does not answer directly the question "why or how?" Here it is: All I know is that in order for any intervention-- therapy, schooling, diagnosis, or whatever intervention there is, to be in working condition, to be effective, in order to see progress and improvement in our children, there has to be some form of acceptance on the part of the parents, even from just one parent to start with. In the end, all the best therapies, therapists and teachers in the world could not even help our children when we ourselves cannot help them. And truly helping our children is rooted down to the very core of our unconditional love for them. To truly help our children is to love them for who they are, what they have. To truly love them is to accept them no matter what.

So on this note I would like to try to answer the question, "How do / did you accept autism into your life?"

I began by looking into my own heart the very source of love for my son. I dug deep, scooped all the raw contents of this fierce emotion that overturns any kind of disorder, this thing called love. I then poured it forth onto my son. I let go of any form of construct, standards, rules and expectations that society and myself had imposed on how my son should be, on how he should live his life. I looked for this deep place of love in my heart and let go. Human as I am, I of course still went through the process of bombarding myself with unanswerable questions. Until I finally raised my arms in surrender. As I let go and let the universe do its work, I prayed to my God. I held steadfast to my faith. All these I practiced everyday, every single day for the past 4 years and I will certainly keep doing this for as long as my son needs me. As to answering the question, "why us, why my son?", the answers unfolded as soon as I began the process of acceptance. As to the answers, there are many, of which I will soon be writing about. For now, what I can answer is how.

I do not claim to be brave. Though what I do, I realize, and as studies have proven how stress levels of autism parents are comparable to those soldiers in combat, what all parents of children of autism do, takes courage and fortitude enough to mobilize an entire cavalry of soldiers, a whole battalion of military men. By no means am I perfect, or have the autism alphabet down to the letter. But I do my best. Even if I fail in some other important areas in my son's life, I make sure that I don't fail in the most important thing of all, everyday, -- accepting my son for who and what he is, a beautiful, beautiful creation of the Universe.


I end this post with this quote:

If we could answer all the "whys" we would not need faith. -Vance Havner-