Saturday, June 30, 2012

Days of Grace

Sometimes when words fail me, photographs save me...

The cool breeze of the afternoon air, the soothing sun rays bursting through magnificent clouds...and our son in his quiet place of joy...Is there anything else more of a sight to behold?

"Just remember it's the cracks in your heart that let the sun shine in..." -Steve Holy-

Bianca, our dobe, understanding my little prince for all that he is, fully.

Our adorable, feisty Morgan...

Our two boys...oh how beautiful...

And all these under one magnificent afternoon sky...

Friday, June 29, 2012

All I Really Need to Know

A few nights ago, as we were getting ready for bed, Morgan, clutching his trio of straws,went out of the room to their play area looking for more toys. I followed him out with Garret right behind me, eyes getting droopier by the minute, already wanting to sleep. I called out, "Morgan, come let's go back inside the room na...Time for bed." Morgan, as usual, naughty, as ever, did not heed my call and walked round and round instead. I repeated, " Morgaaan... come na.", this time with a higher pitch. At this cue, Garret approached his little brother and poked him on the arm, seemingly prodding him to come. At this move, I quickly motioned for their papa to see what Garret just did. We were so amused by Garret's action, we were all smiles until we laughed our hearts out. We were so happy at the idea that Garret understood so well that I really wanted Morgan to come to the room, to the extent that he physically poked his brother to come. This is a big deal for us. Another milestone for our little Prince. Think Theory of Mind, to actually understand what I wanted his brother to do. His brother and not him to do, and to actually make his brother do what I wanted him to do. Correct me if I'm wrong but I seriously think this is one of the very basic foundations of abstract thinking and problem solving. A big "yay!" for our Kuya Garret!

After we recovered from our hearty laughter at what just transpired, I immediately remembered how I've been asking Garret to hold his brother's hand while walking around the school before going in for Sped class. So I asked him after he poked Morgan that night, "Garret, hold Morgan's hand." He so willingly complied and held Morgan's wrist, for how could he hold his brother's hand when it was closed tight around his favorite straws. Then they walked hand in hand back to their bedroom. We finally got ready for bed, turned the lights off and settled in for the night.

I smile at the very memory of it now. I smile as I see my boys walk hand in hand around the preschool campus in the morning. My heart is so full, I don't know whether to cry or to laugh. My heart is full because whenever I see them holding hands, I just feel that the universe is working towards what we need. When my Little Prince and Feisty King hold each hands while walking, looking at their surroundings, Garret smiling at the other kids running and playing around, Morgan with the perpetual frown on his face, I feel everything is right with the world again. What's that term I'm looking for? Grace. Blessed. I feel with all my heart how truly blessed I am. How Grace is abundant in our lives. As I am looking at both my sons, I am looking at the very face of joy and grace. And more than anything, I am once more filled with that purpose that drives me to wake up every single day with a passion in my heart and fortitude in my soul. Whenever I am filled with doubt as to whether or not I know what I am doing in my work, in my family, in raising my boys with my partner, in my relationships with friends, I am comforted because my boys are teaching me all the basic things in life... They are teaching me all I really need to know. Robert Fulghum was right, you know...:-)

All I Really Need to Know I Learned in Kindergarten

Most of what I really need

To know about how to live

And what to do and how to be

I learned in kindergarten.

Wisdom was not at the top

Of the graduate school mountain,

But there in the sandpile at Sunday school.

These are the things I learned:

Share everything.

Play fair.

Don't hit people.

Put things back where you found them.

Clean up your own mess.

Don't take things that aren't yours.

Say you're sorry when you hurt somebody.

Wash your hands before you eat.


Warm cookies and cold milk are good for you.

Live a balanced life -

Learn some and think some

And draw and paint and sing and dance

And play and work everyday some.

Take a nap every afternoon.

When you go out into the world,

Watch out for traffic,

Hold hands and stick together.

Be aware of wonder.

-Robert Fulghum-

I still don't know what the future holds for us. For Garret and Morgan. But what I can do is to teach my boys to always hold hands and stick together. I know in my heart, they will always have this innate sense of innocence and wonderment about the world around them. In fact, everyday they are my teachers and I their student. I only hope as a mother, I can teach them well and enough about what they need to know in this life as they are constantly reminding me everyday all I really need to know.

Wednesday, June 20, 2012

The Answer

I still don't know if I have the correct answer much less a fixed answer to the question "Why?". As in "Why autism and why my son, why my family?" Because I think the answer has evolved over time and will still continue evolving. For the past 4 years, going through all the motions of facing autism, getting the diagnosis, doing the intervention, carrying on with our lives with more love, more patience, more endurance, more resilience, more courage and more fortitude, I may have found some answers.

As one therapist once revealed to me after evaluating my two boys for speech and language, "You do know why you were given Garret and Morgan, don't you? It is so that you can create a center for other children who needs special education." To be able to help other children with special needs, to help other parents and families who are battling the same challenges albeit in different forms, seems to be one of the answers to the question I have asked since then, "Why Autism and why my son?" Autism and my son, so that a center, a school, an accepting, loving place of learning can be created for others in the community who need it.

In a recent post I proudly announced how one of our kids at the Center has been mainstreamed last December and two more kids this school year. When one of the parents, came out of the rooms from a parent-teacher conference with our Sped teacher, and informed me how the neuro-developmental pediatrician has recommended her son to be mainstreamed, my heart was in knots with joy for her and her child, that I literally clapped my hands and was almost in tears. She may have mistaken my expression for a wistfulness for Garret perhaps, that he has not yet been included in mainstream education, that she remarked, "It's okay ma'am, time will come when it will be your turn too." And I hastily shrugged her comment off emphasizing that it didn't bother me at all and in fact I was truly very happy for her and her son. And I meant every word of it. Yesterday, after a long conversation with another mom at the center, she remarked how our Sped teacher commented after seeing her son dragging his stroller bag, in complete regular uniform, "You are already a school boy, Gabby." She choked on her words trying to hold back tears of joy at how her son has indeed have come so far. I marvel at the fact how the third kid has learned to greet me every time he sees me with a perfect English pronunciation of, "Hi Ma'am Bea, goodbye Ma'am Bea.", with an American accent, take note. I can only smile with all my might at his progress as well. Kudos to his mother who I know for a fact has painstakingly and lovingly followed through with all the intervention and showered him and his brother with all the love and acceptance, carrying on with all these while her husband works equally hard overseas. I recalled how these kids started out at the center a year ago-- hyperactive, lacking in impulse control, waiting and sitting skills were nowhere to be seen, focus and attention were everywhere in the room. And look where they are now. How far they have come! My heart is in my throat right now. Now I am the one all choked up holding back the tears as I write these words.

"Why autism, and why my son?" So that I can see the milestones these kids at the center have achieved, how far they have come. They are everyday miracles, gifts from the Universe, poignant reminders at how life is so beautifully crafted despite and in spite of all its mystery.

Why autism and why my family? So that I can see mothers and fathers beaming and all choked up with tears of utter joy and elation, all at the same time, at how their hard work has paid off, how it was all worth all the tears, the screaming, the almost giving up, the crying, the incomprehensible moments autism brings. So that I can see their joy and rejoice in their happiness, and know what pure joy is-- to be truly happy at another one's joy.

One of the Sped teachers at the center posted on her status update sometime last year, something that goes like this, "My passion are my students. They make me so happy." I'm not so sure if I got the exact words, but I'm sure you get the idea. Everyday, these teachers see their students in their brightest most behaved moments down to the worst possible kind of behavior, from the pinkness of health down to the worst of asthma attacks, they teach these kids like they were their own children, giving them tough love, laughter and humor. They teach them how to behave, focus, sit, wait, control their impulses, socialize appropriately. They embed in our kids volumes of lessons that can never be bought from toys 'r' us or any department store, they share the deepest kind of humanity and passion that cannot be measured by college diplomas and certificates. When our sped teachers see their students arrive, their eyes fire up spontaneously, like their day has just really begun to take light. I am so blessed to see this kind of passion everyday at our center. It reminds me of my own humanity, it makes me reach deep down into the very core of my being and scoop up that extra ounce of care and love that my boys and the other kids at the center need every day. Because they need to feel this humanity, this passion, this ability to care deeply from all around, most especially from their learning environment. So again, why autism, why my son? So that I can be more human-- so I can care more deeply and unselfishly pour out love and affection to my own boys and other special kids out there especially those who are discriminated against or are hidden from view. So that I can live my passion, as I am doing right now, writing these words.

Finally. Garret and Morgan have taught me a million lessons that I would never bargain for anything in the world. Everyday. Without fail. I have often asked my self, "If things were different, if things were "normal" in our lives, would I be the same hands-on mother that I am right now? Would I have the same values that I have acquired? Would I have the same strength and courage that I try to muster everyday?" The answer would always be "Probably not." What comes after this answer is usually, "Thank God, things are not "normal". Because I would rather have all the patience, endurance, resilience, fortitude, acceptance and love right now with autism teaching me all these, with my little Prince and feisty King embodying all these, enabling and persistently empowering me to live these values every day. Without fail.

So my final answer to Why autism and why my son? Why my family? Autism and my son and my family-- To teach me what it is to truly love, to teach me what courage is, to teach me what endurance is, to build me up as a person of character and worth, to teach me to think more than myself, that there is a bigger world out there, there are other people who are equally in need and not just myself,to do something about it, to reach out to other families struggling with similar seemingly insurmountable struggles, to serve a purpose greater than the self, to teach me what life is really all about-- thriving with love, fortitude, passion and purpose. Oh how I thank the Universe right now for this "disorder" called Autism. If anything, it has put my life into the best possible order and perspective.

Monday, June 11, 2012

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-

My Own Version of Rest and Relaxation

Another summer has come and gone and I have yet to have that taste of sand, salt water and sea breeze on my tired, tired senses. If I am right, it's been about 5 years since I've been to the beach. And I do mean white sand and clear blue water and miles away from home, a break from the daily grind. I've been having these self-defeating thoughts how I badly need this kind of vacation for me to function well again. I say self-defeating because I realize how I am reinforcing the misconceived notion that in order to be happy , or to be rejuvenated, I have to be physically and literally in the place I want to be.That I have to literally get away from the daily routine and challenges that face me everyday to a achieve a sense of well-being. Misconceived, yes because happiness, has always been a state of mind-- an attitude, a mental disposition, a choice-- a conscious choice. A former student just recently wrote about how happiness should not be in the hands of other people, and in my case, in specific places. A wise one she is of a 20-year old. Was I that full of wisdom at her age?, I wonder. What a great thing for her. And I hope she never loses that.

So this afternoon, after a while of driving around with the boys, Garret was back at our koi pond splishing and splashing away. The koi in turn, having gotten used to Garret's disturbing their peaceful lives every afternoon, swim and swam this way and that, gathering around the leaves Garret throws in the pond. I, in turn held the garden water hose directed it at my son's head and back, watching the trickles of water down his hair, listening to his delighted squeals and hums and murmurs, listening to the sound of the water as he kicks it this way and that, coupled with the constant bubbling of the oxygen gadget in the pond. As usual, as I am amidst all this, my mind wanders to other things-- work, the sped and speech classes of the boys on Monday, etc. Then suddenly, I stop myself. I do not need to think about all that for now. Even for just 15 to 30 minutes. What if I just close my mind off those wanderings and imagine instead that the water sounds I hear from my son and the pond are the waves of the beach that I so long for, lapping on the shore of an island I have yet to go to? What if I picture myself relaxing on a lounge chair and feeling the sea breeze on my senses? And I did. I simply did. It was remarkably calming, soothing and relaxing. I looked at my son's face, and his was a picture of pure content, pure joy, pure peace. "Give me a kiss, Garret", I requested of him. My ever kind son complied and puffed his right cheek just for me to kiss. And I continued to shower him with the water from the garden hose until it was time to go inside in time for dinner.

Happiness, peace of mind, a sense of well-being, restfulness, all these are a state of mind. It's a matter of choice. Conscious choice. All the while my son has been teaching me to stay still, yet I still had no idea what that meant. It is not just being physically staying put, immobile. It is deciding to stay put in the mind. Cease all wanderings. Cease all worries and anxieties. Breathe in, breathe out. Inhale, exhale. Think happy, calm thoughts. Close your eyes, if you must. Be in tune with the wind, the water, the sky, the earth. Be in tune with the universe. Let go. Even for just 15-30 minutes. Even for 5 minutes. This I can do. This I have done. Now I know what my son has been trying to teach me. The challenge is to now practice it. Everyday if I must. As long as I need it for the nourishment of my soul, my well-being. Not just for my boys, my family, but equally important, for me, as well.

Wednesday, June 6, 2012

Of Hearts, Stars and Independence

Recent events have opened an avenue of opportune moments for us in our family. Most especially for our Little Prince and Feisty King. It has forced us to face several facts, head-on, unblinking. For one, Our boys need to learn how to be independent as soon as possible. Two, because the hope of ever finding reliable help (yaya) seems to dwindle by the passing days. And three, in the end, after all, what and who the boys will have after all the "help" has come and gone, is our presence, our love, our unconditional acceptance for who and what they are, and in the end, the only thing constant in their lives is their mama and papa.

In my previous post, I noted how I was postponing teaching Garret to really sit down while finishing his meal. Well, guess what? I finally did it. Correction, Garret finally did it, with a little guidance, urging and prodding. Now, whenever it is time for meals, he motions me to prepare their mickey mouse table set so he can already eat. As I watch him scoop his food with the spoon and fork, brow furrowed in concentration, careful not to let any morsel of rice and pork chop fall off, I cannot help but be proud of him. I have to stop myself from kissing his cheeks which would otherwise interrupt his process of scooping and eating. Oh I am a hopeless mother who delights in every little thing my son achieves. :-) (in the vernacular, "perteng mabawag kalipay.") But I don't care. That's just where my joy lies.

Morgan, on the other hand, "sipat" (naughty) that he is, has consistently been showing how a little grown-up he has become as he removes his crocs and places them on the shoe rack, all on his own. This is a milestone for him. Oh, and during his speech class, he articulated, "yeeee" as his teacher indicated the color yellow, and "geeee" for the color green. When we look at his favorite app on the iPad, when he sees the photo of a turtle, and I say, "turtle", he says, "ttt-h". His pointing has been more pronounced lately too. His joint attention has been clearly observed as well. Whenever his teacher asks him to "get red triangle." He looks at the flashcard first, then at the teacher, seemingly waits for the teacher's confirmation and then gets the red triangle.

A little tidbit about Joint Attention in Autism: Joint Attention is a prerequisite skill in developing social cognition and language-- the ability to perceive and understand what others are thinking and to therefore to be able to engage in social interaction and communication. Clinical research indicates that autism is characterized by chronic, pronounced impairments in initiating joint attention. In other words, autistics show a lack of spontaneous sharing experiences with others. Mundy also points out that individual differences in joint attention are related to the intensity of social symptoms, responsiveness to interventions, and long-term social outcomes in children with autism.(

I realize that while I am getting a little scientific here, and may be boring the reader, this is an effort on my part in explaining why my son's particular achievement means so much to us. So I do hope you all bear with me.

But back to where I was going with this post. My two boys have been accomplishing these remarkable milestones. Little they are not. They cannot be quantified as such because whatever they have achieved and will keep on achieving are equivalent to enormous medals for us. Again, I am a hopelessly proud mother of my boys. And they are my joy.

I read in one of the wall posts of a public figure here on Facebook:

"Here is something I have learned about achievements...the joy lies in the person you are and that you have become in trying to achieve them."

While losing the "help" may have created this opportunity for us to really push Garret to be independent, feed and dress himself among other things, while this may have allowed Morgan to be more self-reliant in his own way, in and by itself, this is an achievement for both of them and for them. As of the moment, while they still cannot verbalize what joy they have in their own accomplishments, I can, as a mother, as their hopelessly proud mother. This is what I would like to articulate-- I would like to think that I have come to rediscover how I am content with simplicity and all the blessings and challenges I have been given. I would like to think that I have become a more grateful person, more grounded to the earth, more thankful to the universe. I truly, truly have found my joy-- not just in my boys but in who I have and have chosen to become because of them.

I entitled this post as "Of Hearts, Stars and Independence", indicating the words my dear Garret has consistently uttered in the past few weeks and the independence that we are trying to inculcate in both him and Morgan with clearly positive results, really. But then, it's just not really about what my boys have achieved or what situations drove us to reach these milestones, more than anything else, I am realizing that this is also about my rediscovering who I am and what I have become from the situations that have been given to me. And as much as I am a mother to Garret and Morgan, if there is anything I've learned for the past 8 years of my life, it is that who I am as a woman, as a person is equally important to my role as a mother, among other equally important roles as well. To be a strong, brave and resilient mother, I first have to be a woman of strength, courage and fortitude. This is why I should never ever stop learning, discovering and searching for enlightenment, enhancement in whatever aspect in my life. Whether it is from the most mundane of things in what my boys do or from a search for educational and personal advancement, what is important is the person I have become in each of my achievements. Therein lies my joy.

So I was thinking of another title to this post, but then I realize, there could be no title more fitting than this. As Isabel Allende emphatically cited in one of her insights from bearing one of the Olympic Flags in Italy many years ago, "While skill and luck are what comprises winning, it is the heart, the passion that wins the gold medal." The heart I have inside me as I mother my boys and to be the woman I ought to be is what will enrich my life. For this, I thank the stars, the heavens, the universe, God for everything that has happened. With the passion I have in my heart, with utter gratefulness to life itself, I know my boys will, in time, be able to proclaim to the joy in what they have achieved and be independent men, capable of facing whatever life has to confront them with head on as well.

A short post script to this post... I am so happy and proud to announce how two of our kids at the center, Marc and E.G. will soon be mainstreamed, integrated in the regular Kinder class this month, in addition to Gabby who was already mainstreamed last December. Thanks to the passion and dedication of our Sped Teachers, Teacher Pol, Teacher Loize and most especially to the unwavering strength of heart of their parents. :-) To the parents of Gabby, Marc and E.G. , what your kids have achieved are amazing. Your kids are amazing. But you, parents are BEYOND amazing. To all parents at the center and all the Special Parents out there, I urge you never to lose heart, never to lose hope and to always be grateful to the heavens.