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.

More than Okay, More than Enough

A hectic day yesterday at the sped center, with the neuro-developmental pediatrician doing 9 evaluations on children. In the afternoon with the evaluations still going on, our kids had to go to the main campus to have their group class/ birthday celebration of one of the kids. I, being the coordinator slash mother slash parent counselor slash organizer of both equally important activities had to do the best I could to somewhat facilitate both activities. So by 2 p.m., I had to leave Garret with his teachers and classmates during group class. With a crying Morgan, who had no intention of joining the group class, in tow, off we went back to the center. I had to check with how the evaluations were going. At around 3:15, I was finally done with explaining to the parent who was already done with the evaluation, our sped program at the center and her options for therapy. Explaining and part counseling actually. So anyway, we went back to the main campus and when I entered the room the kids were already seated eating their Jollibee spaghetti and hamburgers. I scanned the room for Garret and asked the teacher, "Teach, was Garret a good boy?" The teacher responded, "He did okay ma'am." I smiled relieved. I felt guilty leaving him even if it was just for awhile. And hearing the teacher's answer that he did okay, was more than enough to ease the guilt.

What does "okay" mean? If we take it literally, it means satisfactory. Not exceptionally good, but satisfactory. Same with the word, "fine" which in turn means again, satisfactory or in a pleasing manner.

Whenever a therapy session or sped class ends, the parent or caregiver usually asks the teacher or therapist, " Kumusta man akong anak, teach?" (How did my child do in class?) If no tantrums or meltdowns and he complied with most of the tasks given to him. Then the teacher would reply, "Okay man siya ron ma'am" (He did okay today). Or if the child did exceptionally well, a variation of "Okay kaayu siya karon mam." (He did very okay today). I pondered on this thought on why our sped teachers use this term. Why not say" he was a good boy today"? or Why not "he was a bad boy"? If indeed the child did not cooperate that much in class. I don't know if it is just us Filipinos who start teaching the very basic precepts of right and wrong by using the term "good" and "bad" actually assuming that if the child misbehaved or was not compliant, he is immediately labeled as a "bad" boy. Is it universal? I don't know. Anyway, the point that I am trying to get across is that, I think the term "okay" is actually turning out to be the most appropriate and best way to describe a child's performance in class or therapy. Obviously, it is the least of our kids' concerns to purposefully behave in a good or bad manner. Our kids on the spectrum are trying hard everyday to deal with the normal environment that their neuro-typical peers get adjusted to quite easily everyday. So when they do go to their therapy sessions or sped classes, they are doing the best they can with what skills they have in an environment they have no control of. There's this adage that says children never lie. And that they have the purest of souls. I believe this to be true. More so with our kids on the spectrum. So it is unfair to label them as being a "good" or "bad" boy or girl. It is just not right.

I was sharing to our senior high school students last week about how sometimes or even most of the times when kids with autism have tantrums or meltdowns especially in a public place, what we parent really want to say to those who are looking at the "scene of the crime" with judgmental eyes is this, "My child is not misbehaving. He has autism. Please understand." Our kids are not being "bad". They are trying hard. And maybe the times when their coping mechanisms are not enough, that's when they behave inappropriately. And to use the words bad, undisciplined, or other worse labels on them is unthinkable and simply unfair to our kids and to us parents who are doing the best we can.

In reality, this use of "good" and "bad" is like second nature to maybe most parents. Personally, I know I am making a mistake every time I do this. But it just rolled of my tongue quite easily when I asked my son's teacher whether my little prince was a good boy while I was back at the center and they proceeded with group class. When did I realize all this? After we got home and I bathed Garret. He was close to tears because he was already too tired and just wanted to lie down on his bed. The thought just struck me. Because I knew right there and then that he really did well in group class and was already tired. He did the best he can. (Naningkamot jud akong anak.)

Here's the full version of the teacher's answer:

"Was Garret a good boy, Teacher?"

"He did okay, ma'am. He just sat down and took his snacks. He got his biscuits and water from his own bag and sat down. Then he wanted more biscuits but he couldn't find any. He didn't complain but instead played happily with the door knob of the bathroom."

So the easing of the guilt was actually just a mere fraction of what I actually felt at that moment. I was elated, happy, overwhelmed, happily overwhelmed at the thought that my Garret did very well on his own, eating on his own and sitting down without complaining and everything! With everything going on, our little prince once more has shown how far he has come. He did okay. He did very very okay. I take back my question. Because I know that no matter what my son does, however he behaves, however he copes with everything in his environment, however he deals with the normal world, he is a good boy. No matter what. He did the best he could that afternoon. And it was enough. But how he did yesterday afternoon is never a measure of whether he was a good or bad boy. Because again, no matter what, my Garret, my little prince is and always will be a good boy. And if the situation was otherwise, if he had tantrums, or had a meltdown, I know in my heart that my son did the best he could with whatever strength and courage he had, with whatever coping mechanisms he had. To think of him as being bad if this were the situation is unthinkable, unfair and just not right.

Four days ago, I took photos of my little prince while he was playing at the koi pond. I wanted to capture his pure soul and innocence on camera. And when I looked at the 50 or so photos I took, only a handful even came close to what I wanted to capture. Maybe you really can't replicate such purity and innocence on a photograph. Maybe you just have to see it for yourself, in person, experience it yourself with all your heart , mind and soul. In the same manner, I should stop using the words "good" boy or "bad" boy when it comes to my boys. They are good souls, the purest ones. And these souls can never be measured by any label.

Garret did okay yesterday. Very okay, in fact. My boys are okay. This is enough. Pleasing manner or not so pleasing, they are doing the best they can. They are doing fine. They are strong, and brave. That is more than okay. This is more than enough joy for me.

What a blessed life I have!

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.