These Wonderful Things

Garret marches around the room flicking his blocks, red and green. His favorite song is playing. "Horsey-horsey, don't you stop, listen to your hoofs go clickety clop..." His legs and feet raise in time to the music. I sit and watch him go. The song stops and he comes to me. "Bwock," he says showing me his red block. "Block, " I say back. And then, "What color is that, Garret?" He replies, "Gween." He has on his face a mischievous smile that tells me he is messing with me. He waits for my reaction. "Red man gud na!" I say in return, laughing. At this his eyes crinkle and a hearty laugh breaks out. We go on like this a few more times.

Morgan places his legs on my lap signaling me that he is ready for his morning massage. He gets the roller bottle of oil on the table and hands it to me. I rub it on my palms. He directs my hands to his nose and breathes in the scent of his favorite peppermint. As I massage his big toe, he tilts his head and looks at me. He smiles and murmurs what sounds like, "Maaa-maaah." "Yes, my love?" I say to him. He smiles at me and pulls me in for a tight embrace.

Garret will turn 13 years old a couple of months from now. Morgan just turned 10 years old. Everyday I marvel at the place we have arrived at. I remember every step of the journey we have taken to get to where we are. All the wonderful ones and all the not so wonderful ones. But all equally necessary to bring us to now. The road ahead is far from over. We are all works in progress-- My boys growing into who they are meant to be and me burgeoning from my many different elements and infirmities. And while it may seem I already have the answers for the past decade or more, I still ask the hard questions, " How shall we get by? How shall we overcome" Because so long as change is continuous, so the answers are ever evolving. 

Today as I sit and write, I smile as I remember last night when Garret and I laughed over and over at our exchange of "Gween bwock" and "That's red" and as I remember Morgan's way of looking at me more intently as he tilts his head and pulling me in for an embrace just because he wants to. My heart is full and at peace as these things transpire. Perhaps these wonderful things are  how we shall get by, how we shall overcome-- by our shared laughter and our acts of love. That even as the storms come, as they surely will, the laughter afterwards will be richer, and our ways of showing our love,  more meaningful.

Namaste. 

(Photos taken August 2013 at Visayas State University. Garret is 8 years old. Morgan is 5 years old.)

Attraversiamo

This wall
This gap,
This space
A tremendous river
Between us and them
Between our world and
Their secret place

We try to pull them into ours
Make them stay
Within the lines
Color inside the shapes
Circle, heart, square

Trace
The dots from here
To there

And they try, they really do
Feet together
Sit up straight
Quiet hands
Then hold the pen like this
Tripod grip
So write they do
Color they do
On paper as they should
Even though they prefer
Tables, walls or floors

This space

Between us and them
Between our world and
Their exquisitely secret place

Where silence lives
Too much of it
For our world at least

What will it take for us to know
This void
is part of who they are?
Who we are, who are we?
We are too full of noise
We are too full of markings
And
We are too afraid of nothing
Of

Blanks, of spaces, of gaps

The very same
that make our words richer, fuller

The very same
that make our world richer, fuller, more diverse
Beautiful

If we just look over
There is a bridge between
Their world and ours
Let's cross over
And fill in the blanks
Write love, tremendous love
On paper, tables, walls or floors
Occupy the space, embrace
Who they are, who we are

Autism,

This wall
Let's climb it. Or knock it down.
They are us
We are them
Let's close the gap.

The Way I Love You, My Boys

Garret asks to be kissed many times before going to sleep. It is his nightly ritual. Whether it is his papa or me who sleeps beside him, it seems he has this quota of kisses to reach before he is able to sleep. My arm or his papa's has to be placed across his body in a half embrace. It takes a while until he seems content before he falls fast asleep.

Rituals or "stims" we call them, are ways children across the spectrum make to bring some sense into their world, to create order in their universe. It is repetitive behavior often viewed as unusual, awkward and distinctive.

For a time when Morgan was still 4 years old, he would always have his six toy sharks and straws with him. When he wakes up after a nap, the sharks and straws better be in his plain view. Otherwise something similar to chaos would break loose. The tantrums would come and there would be no consoling him.

At present his bedtime ritual is wanting to be hugged in the tightest way possible like an infant, all of  at least 20 kilos of him on my chest until he falls into a deep slumber.

The rigidity to routine, fixations on certain rituals and objects do become more manageable in time as parents learn how to deal with it as with the rest of the symptoms: impairment in social communication, social interaction and social imagination. One crucial thing is to acknowledge that these behaviors are an integral part of who they are. To know that these are not something to be eliminated because to eliminate it would be to take away a part of who they are. I guess what I am trying to say here is that acceptance is an all-or-nothing deal. This is not to say that it is easy. Not in the least.  Garret was diagnosed 6 years ago. Morgan 3 years ago. Even today, I find myself still working at acceptance especially during the not so good days. To come full circle in embracing our children in all their beauty especially the hard parts is a place every parent have to journey to every single day.

Only then can things get better, more manageable.  And eventually one realizes, things didn't get better.  Autism is still there. If any, the challenges even become harder. You, as a parent got better. Better at accepting, better at loving. You have become a better person over time. 

In so many ways my boys will always remain my babies. Their needs are simple. Perhaps they will never be like other neurotypical kids who will grow up to have their careers and families of their own. But their hearts will always remain honest and pure. I have no doubt that society will always view them as unusual and different. The road to autism awareness and acceptance is clearly a long arduous one.  If parents ourselves struggle with awareness and acceptance, what can we expect from the other members in the community? But I have faith. We are getting there. The community is learning. Society is learning.

My boys' needs are simple, basic, elemental, pure. They just want to be loved the way the Universe created them to be. They just want to be nurtured and cared for in such a way that they can be free to reach their highest potential, be who the Universe wants them to be. 

So should the way I love them be--  honest, pure, visceral. A way that says, "I love you, no matter what." Come to think of it, shouldn't all loves be like that?

Come bedtime tonight and the night after tonight and the next and the next, I will kiss my little prince for as many times as he wants me to. I will hug my feisty king as tightly as he wants for as long as he wants. I will wrap them in an embrace that I believe can tell them in a language only he and Morgan understand, that speaks only one true thing, "I love you my boys, no matter what." 

The Little Things

"Enjoy the little things, for one day you may look back and realize they were the big things. "
- Robert Brault.

Special needs parents know this too well. We live this quote every single day of our lives. We not only enjoy the "little things". We celebrate them. So here I am celebrating another "little thing". 

Lately Garret  has been naming his toys like this:

He picks up a toy, (star, hippo, airplane, etc.) brings it to me and says, "star" and does not stop until I stop what I'm doing and repeat after him.  With toys that he has difficulty naming, he does this:

He picks up 'octopus', brings it to me and says, "fa-yer" (flower). I say, "No Garret, Octopus." He says, "Fayer" again. And then says, "uh-tu-tu".

For hippo, he says, "doggy".

For airplane, he says "car". 

I wondered what made him name his toys this way. And then it came upon me that when you do look at the octopus, it does look like a flower with its tentacles spread all around. Come to think of it, the hippopotamus has four legs and some dogs do look like hippos. His toy airplane has wheels. Cars have wheels. Of course, it's a car. I could almost hear his voice say, "Duh, Mama."

How many victories to count in this story? Commenting. Imagination. Comparison.  Deduction? Where do I even begin?

Garret was diagnosed with Autism Spectrum Disorder on April 5, 2008.  In November 2011, Morgan, our youngest son was diagnosed with ASD as well. For the past six years, various challenges presented themselves to us, to say the least. But while the obstacles are many,  the blessings and milestones reached by my boys and myself are more numerous in our journey. Garret and Morgan have taught me more than I could ever teach them in this life. Courage, resilience, gratitude and a deeper appreciation of all the "small" things. 

As my boys have progressed  in countless ways, I have found the courage to find the light in every situation rather than dwell in the parts that Autism casts its shadow upon. It gets better. It really does. With the support and dedication of the "village" that raises my two boys--the teachers, therapists, family, friends near and even from other parts of the world, I realize how incredibly blessed my boys are, how blessed I am. And so with utmost gratitude and awe at the "little" things that my boys achieve, I do not hesitate to announce it to the entire world. Because we couldn't have come this far by ourselves. Perhaps, too,  the celebration of our "little" victories would inspire others who are in a similar journey to always keep doing the good work, keep fighting the good fight. 

With his charming eyes that just twinkle when he smiles, I have long ago decided to call Garret my little prince. Just like Antoine de Saint-Exupery's Little Prince, he teaches me to always look with my heart. Even when the dark days come, especially when the dark days come, it is only right to look at the world with the heart. And to grasp the purest joy I can find inside and to always choose the light. To choose to see and celebrate the milestones and not focus on the setbacks. To decide to marvel at how far we have come rather than furrow our brows at how far we still have to go. To appreciate the present rather than worry excessively about the uncertain future. 

I may call him our 'Little' prince but his courage to face the world everyday is great and the "little" milestones he reaches are nothing short of amazing. And I celebrate him and Morgan, our feisty king, every single day.

Why I call Morgan, our "Feisty King"? That will be for another post. Soon. 

“And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye.”
― Antoine de Saint-Exupéry, The Little Prince

 

In the Right Direction

This morning as Garret was lining up with his classmates outside the classroom, getting ready for their 10 am class, one of his classmates remarked to him, "Hoy, dako!" I was nearby when I heard it and my chest immediately tightened. I inhaled deeply before telling the kid as calmly as I could, "His name is not 'Dako'. His name is Garret."

"Dako" in our vernacular means big.

Garret attends Kinder 1 classes. He is 9 years old. His classmates are 5-6 year-olds. Obviously he is physically taller and bigger than his classmates. But this is where his level of cognition and social skills roughly are. So we decided to place him in the level where he is most adaptive, and can relatively cope with the lessons and simply put, happy.

At this age it might be safe to say that these kids have no concept of discrimination yet. Yet. This is why at this very age, it is important to veer their perception of "differences" to the right direction before the discrimination escalates into plain bullying.

The kid's remark, "Dako" to my son clearly proves how he acknowledged that Garret was different, being bigger than the rest of them. I wonder with this acknowledgement, how much of it he understands or interprets as being, good, not good, acceptable, okay, not okay. Of course, it is not his fault if he perceives the being "big" as something not good because what he sees most of the time may be according to society's so-called "norm". The norm here being, his classmates in K1 should be of the same height or physical build. And who knows what else he considers the "norm" as he is taught at home and in other places.  I do hope though that he perceives "dako" as interesting, to begin with.

My mama bear instinct shot up upon hearing that kid's remark. Even though I was aware at the time that it may be my own interpretation of how the kid perceived his own words, I still felt compelled to defend my son and in the process educate his classmate.

What happened today may be my cue that it is the right time to talk to the entire class about their "big" classmate. If I'm lucky enough, their young minds may still be in the level where they indeed see something different as interesting. Where they see "not like them" as something to be curious and to learn more about.

Having said all that, what then could be the right direction where we could steer the ships of these youngsters' perception? Or for the rest of the population who are not young anymore but are in need of a change in perception?

Perhaps we could start with acknowledging the different. Acknowledging means not ignoring. How many of us have been taught that it's rude to stare at people? What happens instead of staring? We ignore people, don't look at them in the eye especially the ones who are "different". It's like the elephant in the room. Everybody knows it's there but nobody wants to acknowledge it. Now, what does that achieve? Nothing really, except awkwardness and discomfort. As an autism parent, I have had my fare share of stares in public places whenever I bring my boys to the grocery. What do I do? I look at them in the eye and smile at them. They have no choice but to smile back. Whether it was out of embarrassment that I caught them staring or whether they understood our predicament, I don't know. All I know is a smile is one way of breaking the "rudeness". It gives us autism parents a feeling of communal understanding, an assurance that even if our kids are having a meltdown at the mall, nobody is judging us or our kids. And especially during those times where we really don't have the strength anymore to smile at anybody, when a stranger shows us a kind, understanding face, it takes a fraction of a load off our shoulders. On this note, however let me say that there is a huge difference between acknowledgement and judgment. I think this is self-explanatory.

After acknowledging what is different then maybe we could move on to knowing more about the different.

Ignorance is not always bliss. It hurts our kids. It hurts the autism parents, the family members of the kid with autism. What is strange scares us. What is unknown brings anxiety. And the only way to eradicate fear and ignorance is to confront it. Google it, Autism, Down Syndrome, Global Developmental Delay, Cerebral Palsy, Mental Delay and all else. If you don't have internet connection, which I highly doubt, ask a pediatrician. Or ask us, ask the parents. Don't worry we won't bite. We would appreciate it even if you ask about our kids. Kindly, of course. But we will bite those who make snide, purposeful, ignorant remarks about our kids and our lives.

With knowledge comes a shift in paradigm. In perception. In beliefs. Which we hope will open the way to acceptance. If not acceptance, then tolerance to begin with. The shift in paradigm that we hope people will have when they know more about what our kids' disabilities are is the realization that all human beings are indeed created different. And that different is okay. Different is not something to be feared. Different is not something to be chiseled into the "norm". Different is the source where we voraciously learn from each other.

The ultimate direction that we hope people can arrive at, that kids can arrive at is celebration. A Celebration of the Different. To not only acknowledge, know and accept our children. But more importantly to marvel at their individual differences. Their own individual differences. That even we members of the neurotypical / normal race are remarkably different. To give value to all the quirks and various physical, cognitive and social facets of our children. Verbal or non-verbal. Restless or behaved. Short in height or tall. Small or Big.

Autism parents, special needs parents celebrate every milestone. There are no little achievements. Little is not in our vocabulary. Because we know the value of every single thing our children work hard for and accomplish every single day. Therefore we shout to the world their successes. We pause in our tracks and thank the heavens for the very persons our children are. We celebrate them. Every part of who they are.

What if parents of normal kids out there realize the value of even the minutest detail of their own children's efforts for striving and not just the first honor medals and valedictorian certificates? What if parents of neurotypical kids celebrate the kindness of their children and not just the 100 of every subject in their report cards? What if they celebrate their children who don't fit into the "old school" system, who learn through the arts and sports? What if parents celebrate how their children are able to learn life skills as simple as doing house chores willfully, cleaning up after their own messes, running errands efficiently not just how they read a thousand pages of Algebra and Calculus books? When that happens, then that will be the real celebration. That will be the real essence of the Celebration of the Different. 

"His name is not 'Dako'. His name is Garret." Garret's classmate looked at me silently seemingly afraid that I would reprimand him. I looked at his i.d. and said, "J, your classmate's name is Garret. Okay?" He still kept quiet. I offered him my palm for a high-five and smiled at him. He high-fived me, a smile slowly creeping into his face.

Come Monday next week, I'll be speaking to Garret's class and try the best way I can to steer them in the right direction of how they view the "different". How they see my big son. How they perceive Garret and his being different. Hopefully, they'll learn to accept that Big can be okay. That Big can be in fact, beautiful. And hopefully they will grow up and learn to celebrate the big, the different. 

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.

Sacrifice

December 1, 2012. 3:15 p.m. Nearing end of the Parenting Workshop.

"How do you see your child 10 years from now?" "What do you think will hinder him from becoming what you have envisioned him to be, from reaching his optimum potential?"

These were the final two questions our Workshop trainer asked or rather, as I felt, purposefully thrown at us that jolted us to our senses. And I, for the life of me, was stunned. A lot to process. A hell of a lot to think about.

I didn't get to answer in front of the big group. Which was a good thing because even just listening to the answers of the other moms in the workshop, the tears just wouldn't stop falling. Like a a gasket had blown. And water was coming down in torrents.

1980-2001.

I was born and raised a Catholic. Spent twelve years in an all girls run-by-the-nuns Catholic school. My mom and aunts who helped raised me was also very religious, is very religious. Thus, as you can imagine, I was taught all the works at home and in school-- the saying of the holy rosary, attending the blessed mass, if possible everyday. And of course, being born and raised in Cebu , I was taught early on the devotion to the Blessed Señor Sto. Niño. I remember I was still 7 or 8, I would cry my eyes out because I was so tired from walking the what seemed like forever procession the day before the feast day of the Señor as was the tradition. But the most vivid memory I have is when my mom brought me to the Basilica del Sto. Niño. We sat down in one of the pews. And I remember looking around but what caught and held my attention was the number of devotees kneel-walking from the entrance of the basilica to the altar, very slowly, rosary beads in hand, murmuring 50 Hail Mary's, face fervent in prayer and supplication. I remember thinking back then, how painful their knees must be. Of course at that time, I couldn't understand why those people did what they did. It certainly didn't make sense to a 7-year old mind. When I finally couldn't hold the questions in, I asked my mom and she answered me, "They're making a sacrifice, darling.". I fell silent. Not because I understood, but because the word, "sacrifice" brought more confusion. What does sacrifice mean? Does this mean that God will answer their prayers because of their knees hurt? Or rather because they made their knees hurt? My brain simply could not fathom it.

Anyhow, through the years, I understood more what sacrifice meant as it translated itself into various ways, exemplified itself in different growing up phases of my life, from giving up t.v. time watching to finish a homework, giving up one's feisty personality so my caregiver would not spank me, giving up precious hours of sleep just to complete the requirements that would allow me to march on that elusive high school graduation stage and get that diploma. Then in college it became a giving up of a sense of comfort and security I had in the exclusive high school for a place in college life, a giving up of a certain preference of clothing to please a boyfriend (oh dear God, why?), then again, a giving up of precious hours of sleep to complete that darn college thesis and that double darn Advance Psychometrics requirement which if anybody would ask me now what it was I absolutely be pale and as blank as a fill-in-the blanks test blank.

So over the years, sacrifice become a clearer concept, a constant act required if I was to dream and realize my dreams in life. It was no longer an absurd idea that wracked my brain when I was entering early childhood.

2012.Present.

Morgan is on the belt swing on his belly just as he likes it. Swishing to and fro. Me telling him, "10 counts more and we'll do the puzzle, Morgan." He obediently complies after the 8th count and sits down on the chair, ready to do the work. I kneel on the rubber mat as I assist him in placing the wooden animal pegs on the appropriate place. It takes him some time to finish everything. Eyebrows furrowed in concentration, then glancing up every now and then looking at the surroundings, then back at his work again. Me, still kneeling, feeling the grains of the rubber mat digging into my skin. He finally completes the puzzle and I gave him a high-five. He looks at me and slaps my hand back. I tell him, "Good job, Morgan!" I pat his cheeks and placed both his hands on my cheeks so he would look at me and see I was happy he had done the work. He smiles a little. So characteristic of my feisty king. Giving nothing away. I reward him with another 10 counts of his belt belly-swinging. He squeals in delight.

My heart is delighted.


Garret follows me into their room to have a change of clothes. He sees his alphabet and numbers writing booklet, gets it and hands me his pencil case where his markers are. He smiles, eager to start writing. I tell him, "You want to write, Kuya? Okay, we will change first then we'll write." We then go out to the family room and he sits down on his chair. He opens to the first page and waits expectantly for me to ready his marker. He writes "A" three times for the upper case. Then for the lower case. Morgan invades the room and goes for the marker to add to his group of toys. We transfer to our room where Morgan cannot disturb us. Garret settles down again and continues writing. "B" this time, upper case and lower case three times each. Me kneeling down, my hand holding his to steady his excited fingers. I feel the wooden floor boards dig into my skin. He moves on to C, D, E. We finish until Z. Then in the last blank pages I let him write his name and trace the letters of my name, BEA. Then I let him copy my name. He writes with my assistance--B-E, then another E, then A. BEEA. I smile. He smiles. I let him trace the name of his papa. Again, happily he complies. I tell him, "Good job, Garret!"I thought we were done but he looked at his Numbers booklet. And we continue. This time we go from 1 to 10. I continue assisting him. His face serious in concentration. We finally finish. Garret's face is content.

My heart is content.

December 1, 2012. 3:15 p.m. Nearing end of the Parenting Workshop.

"How do you see your child 10 years from now?", our trainer asked a mom.

"My child then would be in grade 9. And I think he will become and engineer later on. "

"What do you think will hinder your child from becoming how you see him to be 10 years from now?

"If I accept the job promotion waiting for me. I know the past two years work on my son will be all for nothing. Because it will require me to be away from my family, away from my child."

One word rang loud and clear in the room. Sacrifice.

This mom, right there and then had stamped and declared her decision to give up something for her child.

As everybody in the room digested what just transpired, I couldn't look up. My heart was in knots. My palms catching the droplets from my eyes.

Growing up it became ingrained in me that maybe if I knelt longer during prayer, God would take me more seriously. Apparently that image in the Basilica stayed in my young mind and made quite an impression. I thought, if I prayed long enough, meaning I knelt through all the five mysteries of the rosary then God would grant me with what I prayed for. I thought this was how it worked. Until I was given Garret and Morgan. It was only then that I knew right away what little I knew about sacrifice. It wasn't about just the act of prayer alone at all. It wasn't about the kneeling, the enduring 3 hour-novenas or several hours of procession. It wasn't about the inflicting of pain on oneself at all.

Sacrifice. Miriam Webster defines it as a giving up of something especially for the sake of someone else.

Something for someone. A thing for a person. Or a situation for a person. A job promotion for the sake of the kids. Resigning from a job in exchange for the challenging yet beautiful opportunity to raise the kids.

Sacrifice-- giving up my pride , my notion of normalcy and what should be for, unconditional acceptance of my boys. Giving up my own dreams for my boys' own dreams. Giving up my own plans for a much greater, unseen and seemingly impossible plan. Giving up my own fears of the future, the need to control the future so that my boys can be whoever they want to be, whoever the universe wants them to be. Giving up who I am, the limits I thought myself to have to defy the limits society has put on myself as a mother, on my boys on their potential. Giving up even conventional notions of dignity at the height of betrayal for the sake of my boys.

And it goes without saying all the intervention, special ed classes and various kinds of therapy is one sacrifice that we, special needs parents, gladly do. Glad is is the best I can do to describe it. The cost of intervention is impossible. And we give up conventional forms of leisure, vacation and entertainment so our kids will learn even the very basic functions of living and independence.

Sacrifice, giving all the time, patience, endurance, acceptance, understanding, empathy and unconditional love for my little Prince and feisty king that even I wouldn't know where this all came from, giving everything, so much so that my boys wouldn't even know what to do with all of it.

Now I know better. Now I know sacrifice is not just about praying long hours and kneeling for hours on end. No matter how many basilicas I would think of conquering with my supplications and prayers, it will all be for naught if I don't DO what my boys need me to do-- kneel on the rubber mats as I teach my Morgan, kneel on the wooden floorboards as I assist my Garret with his writing exercises, every day, making sure each happening in a day is a learning experience for my boys, giving attention to detail telling them it's alright to wait in line in the grocery cashier no matter how much they want to go home right away, telling them it's alright to wait in the car while Papa is still buying something from the DVD store, telling them it's alright to sit still while eating their lunch, teaching them patience as I show them how patient I am with them. To love them with a love that knows no bounds. This is the true meaning of sacrifice.

Sacrifice is giving up something for someone. It may sometimes mean giving up one's happiness for our children's joy. The most beautiful thing is that as we bask in our children's joy, we realize that this right here, is true happiness.

Sacrifice is giving a huge part of myself to my boys so they will be complete, whole, be who they are meant to be.

The real reason I was relieved I wasn't asked to answer the two questions in front of the big group is that I didn't have any. I only had fear in my heart. An uncontrollable fear of the future for my boys. Now I realize, this is so selfish of me. This is just like limiting and cordoning my boys' abilities, blocking their own light. And I can't allow that to happen. My own fear cannot and should not cripple my boys.

Now I throw back the question to myself, "How do I see Garret and Morgan 10 or 20 years from now?"

With a much stronger conviction and belief in my heart, I answer this:

Garret will be a writer, a poet. Or a musician. An artist.
Morgan will be a philosopher. A leader. A lawyer. A change-maker in the community.

Or whoever they want to be.

"What will hinder them from becoming who you envisioned them to be?"

My own personal fear of the future.

From this day forward, I promise to my two boys,

"Garret, my little prince, Morgan, my feisty king, NOTHING will ever get in the way of your dreams. You will be who you want to be. You will be what you are meant to be. Mama and Papa will make sure of it."


To the one who have allowed us to dig deep into our souls that fateful Saturday in December of 2012, you have said that tears have watered our souls. Nay, I disagree it is YOU have watered our souls well. And for that, thank you Teacher Mark Saballa...

The Elements

Last night. Garret all curled up in my arms, knees to his chest my right arm draped over his back, my left arm under his neck. Whenever I shift my right arm, he pulls it right back to his body, wanting to be wrapped in this cocoon of embrace. Perhaps he wants to be enveloped not unlike when he was still in my womb? Safe, warm, comfortable, protected from everything. Nine months inside my body, preparing him to be ready to face the world, all the elements out there, nurturing him with survival instincts, willing him to thrive in this crazy, unpredictable and sometimes cruel world of ours. As with all parents, I know I can't protect my boys from everything. I know that too well. Special Needs parents KNOW THIS TOO WELL. I promised myself not to write any depressing or somber posts any more. But this is different. I just couldn't shake this sinking feeling in my gut how people can truly be cruel without even a second thought. Insensitive, another parent surmised. No, I disagreed. Insensitive is an understatement. Cruel is more like it. The worst part? These people do not even know they are being cruel. A malicious, offhand statement, a disapproving look and comment at the grocery store, a muttering of "What an undisciplined child." , all sorts of cruelty come in all forms and sizes. Times like these I wish I could place my two boys back in my womb to protect them from these elements. Yes, I call these cruel people elements. That's the best I can do to get back at them, to whittle them down to elements. Because people who do not give a second thought to the things they say to hurt my boys or all the special kids out there do not deserve to be called humans. They have forgotten their humanity, to say the least. I have to admit, even if I had blown off steam last night through my status update, I feel it is not enough. Forgive me but I most definitely CANNOT turn the other cheek on this one. Forgive me if I may have to contradict my previous posts affirming that Kindness should be a way of life, even to the most cruel of us. This post may seem that I am succumbing to the level of these 'elements'. But this is not so. Because, with an overpowering fervor and conviction, when it comes to my boys and all the special kids out there, I , quite simply, WILL NOT TAKE THIS SITTING DOWN. And this is definitely not stooping to the level of these elements. This is standing up for my boys.

This is for Garret and for Morgan. This is for Ethan and E.G. This is for Zaijan. This is for Gabby. This is for Marc. This is for Ken. This is for Kannon. This is for all the kids at the center. This is for all the special kids out there. This is for all the Autism Moms and Dads out there. This is for all the Special Needs Parents out there. Let us not take this sitting down. I plead you. I empower you. Let us fight back this attitude of ignorance and cruelty. Because this will simply not do. This is our children we are talking about. Because if only it is possible, we autism moms would without a second thought put back our children back in our wombs where no one can hurt them. No elements can hurt them. But it's not. So this is what we can and will do. Fight back. Spread Autism Awareness. Educate people. Especially when they are most cruel. Especially when they have forgotten their humanity. Let us jolt them back to their humanity.

Right now as I am furiously punching the keys my Garret is smiling, calm, peaceful, content happy, waiting to go to school. Morgan is still fast asleep. They do not know the fire boiling inside me. How angry I am at these elements. But they know how much I love them. This should be the only thing they know. Love. Kindness. And God knows, with every bit of bone, muscle and vein in my body, I will protect them. And I will fight for them.

An Angel's Smile

I had to write this post if only to capture and carve this beautiful memory of one little girl's smile forever in my heart and for all to see or imagine at the very least.

It was yesterday afternoon when it happened. The afternoon special ed class at our center ended. And the kids proceeded to go home with their caregivers hand in hand. The last of them was our one of our three girls at the center. Their driver had not arrived yet so they waited in the reception area. I was preoccupied with something, some papers and stuff for the new kids to be evaluated by our visiting neuro-developmental pediatrician, when I heard the little girl's caregiver say, "Ma'am, diri lang sa mi mag huwat ha." (Ma'am, we'll wait for our driver here, is that okay?). I mumbled a quick "Yes, of course" to them without even turning my head. A few minutes later, their driver arrived. I heard the caregiver say, "Ma'am, ari na mi." (Our driver has arrived. We are going home now.) This time I stopped with whatever I was doing and turned to look at them. And boy, was I glad I did. "Bye, Sweetie.", I called out to the little girl. Her caregiver made her turn towards me and said, " Say bye-bye to Ma'am Bea." No response. She just looked at me with questioning eyes. I said again, "Bye Sweetie." Pause. One, two, three seconds later, her questioning face broke into one big smile at me! Oh how my heart leaped! Her caregiver said happily, "Very good, Annie! (not her real name)." Little Annie held my gaze for more than 5 seconds still smiling, then continued to walk towards their vehicle assisted by her caregiver. Even when their van drove away, her smile remained in my vision. The joy I felt still beating loudly upon my chest.

Annie has Rett Syndrome, a rare form of autism that affects only girls. Its manifestation is the slowing of head growth, loss of muscle tone, loss of the use of hands, a stiffened gait in walking, uncoordinated breathing, loss of language and social skills and seizures(http://www.webmd.com/brain/autism/rett-syndrome)

This information serves not so that readers can have some sympathy for our little Annie or perhaps comment, "How difficult her life must be.", but so you can see beyond the challenges that lay before her, the challenges that she is going through every minute of her everyday, so you can see the unbelievable strength that this little girl has shown despite the odds against her. And not only her strength but also the strength, patience, resilience and unconditional love of her mother and father and other family members and the most wonderful caregivers that take great care of her every single day.

I know for a fact how her parents strive to work very hard just to keep up with everything that she needs. And I'm not only talking about the financial aspects. The emotional strength that is required for this kind of life circumstance is immeasurable. I know for deeply loved little Annie is by her parents. If I were asked to define what acceptance really is, I would answer you, " Look at them and how they love their little Annie. " They would do anything in their power to protect her, nurture her, give her the best possible quality of life, love her in every conceivable possible way. And I know for a fact how great their faith is in the Universe, that everything has a purpose, and that everything will be taken cared of.

I take my hat off to Little Annie's parents, family members and caregivers. Their love, strength, resilience and acceptance is so amazing, beyond words. So powerful. I am deeply humbled by who they are and what they do. Everyday without fail. It makes me realize once again, there is a much greater force in this world, much greater purpose in this life than that of fulfilling personal joys.

Most of all, I am moved beyond words, beyond tears, beyond anything by Little Annie. I am humbled by her very presence in our center, in our lives. It reminds me once more to be grateful for every single blessing that I have in my own life, in my two boys, in my life partner, in my family. Her most cherubic smile has reignited the fire within me to do everything I can in my own way to make this world a better one for her, for my boys and all the other kids with special needs.

So you see, I had to write this post. Not only so I cannot forget the memory of that angelic smile of little Annie, not only so you can imagine what her life must be, not only so you can see the immense strength in her, but so that I can give Little Annie the salutation and celebration that she and her family so well deserve.

I'm sure Annie's family do not seek praise or commendations for how they raise their child, or how much strength they bring out everyday. Nor does Annie. They just want to live their lives the best way they can, the best way they know how. Everything else is just icing on the cake. But I have to share this to the world for another more important reason, a deeper cause. Because this is my own way of telling the world, encouraging and empowering other families out there similar to Annie's or ours to keep going, never give up, keep on praying, be steadfast in hope and faith.

I end this post with a quote from a friend:

"It is such a relief that the greatness I thought myself to be deserving of is my son." -Pete Owens-

In the end, after all is said and done, after everything we've endured, in all the joys we are blessed with, there is one life truth that becomes clear: the salutation and celebration that we once thought we were deserving in this life is not ourselves, but our children. They are the reason we are here. They are our salutation. They are our greatness. And we are all the better for this amazing truth.


Thank you, Little Annie. From now on, every time I start to lose track of my path, every time the questions of why return, I will close my eyes remember how you smiled like an angel at me, how you broke through the walls of autism surrounding you, I will feel your strength and remember the strength of your family and know in my heart how my boys, my family and I will, in turn will break through.