Sunday, December 9, 2012

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...





























































































Saturday, December 8, 2012

Right Here

Lazy Saturday morning,
Watching my boys still asleep,
Garret breathing softly,
left hand under his right cheek,
tucking his feet
underneath.
Morgan's face as round as siopao,
lips as pouty as can be,
sleeps contentedly
beside his papa so close
they are nose to nose...
No other place I need to be
All I need is here
This, right here,
is where I'm supposed to be. ♥




Wednesday, November 28, 2012

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.


Thursday, November 1, 2012

My Prayer for Today

"Garret, please bring these to the kitchen.", I requested of my little prince this morning, referring to the biscuits and water bottle in our room from the night before. He willingly took it from me and brought it to the kitchen as I went back inside to our room to finish making the bed. As I was tugging the corners of the bed sheet, a thought tugged at the corners of my heart as well --My little prince can already do what is requested of him. Translation- do simple chores, or help around the house, or simply help me as I am cleaning up our room. What a wonderful thought, I realized. But then again, this milestone of his is just one of many wonderful things that we have been blessed with.

Everyday miracles and life lessons have come tumbling out and so overwhelmed I have been that the only way I have written about it was to declare it on FB as my status. Short, brief sentences that aptly describe the moments as I remember it clearly. Posting it right away for fear that it will dissipate into some faded memory.

I remember sometime around March last year how I had just begun writing this blog, when it seemed as if words just came rolling out, my mom , in one of our many conversations asked me and later admonished me, "How is your prayer life? Don't forget to pray, Bea. Remember that it is in prayer that you draw your strength and wisdom as a mom and as a wife." I responded to her, "Mom, when I write, I am speaking to God. This is my prayer."

Of course, all the FB statuses I posted was all filled with the intention of consolidating it later on into one lengthy prose, or blog post as we call it nowadays. Or, remembering how I answered my mom-- one lengthy conversation with my God, one long prayer of gratitude.

How do I begin?

Do I begin by narrating again such wonderful moments to relive the magic and beauty in all of it? Nah, too redundant. Then again, I believe gratitude can never be redundant. Being grateful for every blessing I have been given can never be enough. And who is to say that prayers need to be filled with only one request and one thanksgiving, and should be said only once?

So here goes.

Thank you God, Heavens, Universe for moments like these:

Garret learning to eat on his own, returning his plate to the kitchen.
Garret learning to share his toys with Morgan, learning to be a big brother.
Garret exploring different textures of food, eating the french toast I made, eating breakfast with us.
Garret learning to be compliant, obedient, behaved in different places as when his papa took him to a Rotary event at a public high school. Garret just sitting down, observing the people and his surroundings.
Garret recognizing the letters of his own name, and writing it with so much enthusiasm and fervor that the walls of our home boast of the artistry of his handwriting, the beauty of his name.
Garret singing not unlike the cherubim with such effortless grace, with such pure harmony.
Garret dancing to a hip hop soundtrack to the movie we watched last night.
Garret responding (echolalic or not, I don't really care) to my I love you with a clear "YOU."

Morgan learning to sit through the entire sped class without whining or crying.
Morgan learning to carry his own backpack, removing his own shoes and putting it on the shoe rack at school.
Morgan happily imitating the actions of his teachers during circle time. "Sit down, sit down, we're rocking the boat..."
Morgan mastering the shapes of his mickey mouse form board.
Morgan learning to play with water in his mouth, gargle and spit (motor planning skills)
Morgan saying, "Go" for when he wants to go home or go out to play in the garden.
Morgan, while waiting for his papa to pick us up from school saying, "An-doo" (for his papa Andro)
Morgan calling my name "Bea (Bee-ya)" when I wasn't around as if looking for me, asking where I was.
Morgan pouting his lips for a kiss or puffing his cheek when I ask him for a kiss.
Morgan calling me "momma" in beautifully rare moments.

The list does not stop here. Miracles happen everyday. As my two boys have taught me this one poignant truth among many, I in turn am grateful for all the little things, everyday miracles that make up my world, that create my life, that beautifully design our life.

While autism is a clear and everyday reality for our family, we've finally learned that one important thing that will allow us to live out the greatest gratitude of all to the heavens, more than poetry, prose or blog post, it is this lesson, this decision that we've come to make, this life perspective-- we cannot let our fear of the future for our boys,the challenges that we face everyday overshadow the amazing miracles that happen day by single day. Rhonda Byrne said and I quote, "Life does not happen to you, it responds to you." The quality of our life is not a result of fate or circumstance. It is a result of our attitude towards life, it is the consequence of our everyday decision to accept whatever there is to accept about autism, do what we can about it, help our boys the best way we can for them to survive in this world and carry on with life with awe and wonder and a joyful and grateful heart.

So as I have challenged Autism many times before with a bullheaded, angry pride, I say this now with a more calm and discerning tone and disposition, "Is that all you've got, Autism? Because THIS is what we got. So why don't you bring it on? :-)" (Yes, complete with a smiley face.)

Some of my readers commented how they were always in tears reading my posts, probably because they were feeling the pain I wanted to express while experiencing one of the dark days of autism, especially those days where nothing really made sense. Well, now, I think I can say, every once in a while even through the thickest and gloomiest of clouds, the sun breaks through. I can't say I've come or my family and I have come full circle because there is still more to life. We are still young. And we still have numerous lessons to learn. But I think I can say we've taken the first step, breaking the shell of our pride and human wisdom and entering into this world of wonder, joy and gratitude-- the beautiful world of our two beautiful boys, our two royalties little Prince Garret and our feisty king Morgan.


"Your pain is the breaking of the shell that encloses your understanding...And could you keep your heart in wonder at the daily miracles of your life, your pain would not seem less wondrous than your joy." -Kahlil Gibran-


My prayer for today-- Thank you God for everyday miracles. I am in awe. My heart is filled with joy. I am and will eternally be grateful.























Monday, October 29, 2012

The Illuminating Moon

The moon's out tonight
Clear as day
and that light!
Illuminating the clouds
Clouds that loom
Larger than life
Transforming into shapes
That come alive
Then my Garret
sees it
not unlike
The Little Prince
Yes, Antoine St. Exupery's
Royalty
Gazing in wonder and awe
at the different planets
and kingdoms
My Little Prince
sees the moon as if
for the very first time
Fingers flapping
bunched together as if
trying to capture
that bright, white
circle
Smiling, oh what delight!
Stepping on our garden
stones brightened
by that illuminating
moon
Then I say,
"Look again, Garret"
Gently turning his head
upward
He looks and smiles.
Silent, content
No words needed
I turn silent myself,
content--quiet joy.
No words needed.
Save for the moon--
speaking its language
illuminating strength
Illuminating my joy
Casting the brightest
light on
my prince,
on my life.


Saturday, October 6, 2012

The Ground Beneath Our Feet

Gingerly I walk out
of my little boy shoes
And onto the cemented
ground,
rough, crooked
And oh how I love it
I look around
with eyes wide,
searching
questioning
What's this world like?
And then something
way up there
hovers in formation
singing, flying
and like me,
flapping!
Mama tells me they're
birds in the sky
Oh and the sky!
bluest of blue
and wispiest whites
And wait till
dusk comes,
where way up there
turns lavender
red
Oh how I love
sunsets instead
And then I tread
on my little bare
feet onto our koi pond
freshly cleaned
Of course it's not
enough for me
to stare at the fish
or to just look at the water
I immerse
my little boy hands
and splish and splash
Still it's not enough
I need to feel it,
My whole body needs
it, the calmness
it brings, soothing
water, I go in
And then I sing!
Oh how I sing,
And don't even ask
when I'm on the
belt swing
I put my belly over it
arms hanging
then I swish
to and fro
As high as I
can go!
Then I get bored, so
I twist round and round
till it's tight
then I let go
with all my might
And it's round and round
again, spinning
spinning
And me laughing, laughing!
This is my world,
come join me,
See how fun
how beautiful it must be
For others may
call it sensory dysfunction
I call it feeling the earth
the wind, the water
for what it is
Some call it weirdness
I call it the natural order of things
Most call it unusual
But I call it
just breathing the air
that I breathe
feeling the ground
beneath our feet
I call it living our
lives as it should be.
fully....


I've long wanted to write about my boys' unique way of experiencing the world. By unique, yes, I do mean their sensory processing difficulties and challenges. Whenever Morgan takes off his crocs to play in our garage, I can see the satisfaction he feels as he treads over the roughness of the cement, walks over the big stones, and Garret too, as he just sits and sometimes even lays down on the ground. If there is one word that could describe my boys' countenance when they are experiencing the world in their own way, it would be this: peace.

Come to think of it, in our world full of immediate gratification gadgets, technology and everything automatic, we fail to really experience life as it is. The presence of technology more often than not seems to override our natural ability to learn things the experiential way as we used to. This is why every time I see my boys doing what they do, I am fascinated, awed and feel a certain sense of nostalgia. My boys remind me what life is really all about. The remind me never to let go of things that matter. They tell me everyday to always, always live life as it is supposed to be lived-- fully.






Wednesday, October 3, 2012

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.

















Sunday, September 30, 2012

In the Silence

All is silent

Save for the water gurgling

as koi surface to

have their fill

All is silent

Save for my king's

occasional squeal

of delight

As red and orange

shimmies through

the clear pond

right in front of his

very eyes

All is silent

Save for Mayas

above singing sweetly

from the nymph tree

All is silent

Save for the afternoon

sun emanating

through the clearest

skies

All is silent

Save for my voice

speaking to my king

Admonishing him

"Look, darling, fish are swimming."

All is silent

Save for my thoughts

Hoping, praying

someday, someday...

And then

He looks at me

Eyes crinkling

Mouth forming into

the biggest smile,

his arms wrapping

around me,

My king, embracing me

with all his might...

And then I fall silent

Save for the loud

beating of my heart

rendered speechless...

Clear as the

emanating sun,

words are not needed

For love is here,

Love abounds...




Saturday, September 29, 2012

The Song of the Skies


My baby sings with all his might
singing with the sun, the moon, the stars
with all the sounds of the earth
under the majestic, heavenly skies
No matter there are no words
deciphered, only hums and drums
but still he sings
with all the wonder in his eyes
Our child explores
for the first time,
it seems
Our face, our voice, our love
in the most concrete of ways
Our words of " I love you's"
no longer disappear into the
universe's dust,
he hears us,
he bids us,
"Come mama, come papa"
Come into my world,
This is why he sings
This is why we sing
the symphony of the heavens,
the song of the magnificent
magnificent skies...
Thank you great sun, thank you!




Sunday, September 2, 2012

Insights from Another Contintent


Some days are good and wonderful and some not so great. And then there are days where you meet people who let you see the world in a different light, allow you to reach deep within your soul and illuminate even the darkest corners of your mind. I am so blessed to have come across a fellow autism parent from another continent, a father who is undoubtedly and utterly devoted to his son. I have him to thank for the insights I gained for the past two weeks.

My boys, Garret and Morgan, are sent to save me from myself.


Mark Twain once said, "The two most important days in your life are: the day you are born and the day you find out why." In the most wondrous of days where miracles happen, when my two boys reach certain milestones at their own pace, my heart soars. When I see the joy in the faces of the other parents at the center because of their own children's milestones achieved, all the more joy. It is at this point that I reach my own milestone. There is that one clear, true thing that resonates within my soul-- I know now why I was born--So I can parent my two boys. To be a mother to Garret and Morgan is the greatest gift the Universe has given me. My purpose in this life is a gift from the universe. And the other reason is so that I can help other parents, families, children afflicted with autism. My boys are sent to save me from myself so I can serve a purpose greater than myself. So that I can be bigger than who I am. The universe has given me the greatest gift. And this gift is my salvation.

My two boys make our lives doubly blessed, double the strength, double the resilience, double the joy.

Everyone reaches a breaking point. I did three days ago. I went to the safest place I could find and wept. I asked all the unspeakable questions that you're not supposed to ask. And I allowed myself the mistake of self-blame and self-pity. I just had to let it out. Somehow detoxifying myself from all these negative thoughts. Purifying my soul somewhat. And two of the kindest people I know provided me a sense of comfort. They prayed for me right there and then, even cried with me. I cannot thank them enough. When I was relieved from all that ugly pain, I pulled myself together and with a newer, stronger resolve, I said, "Despite everything, I am still blessed." We are not given crosses we cannot carry, so they say. That is why I know with my two boys, I have been given double the strength, double the resilience, double the love, double the grace and double the joy.

"Having children of any kind is a privilege that not every adult gets to enjoy. It's our duty to those people to appreciate our children fully and never take the experience for granted." -Pete Owens-


No need for explanation, really, for this third insight. Life is really,really good to me. Thank you, life. Thank you, Pete Owens.

Lastly,

One of the great purposes of autism is so that we will never forget our shared humanity.


The Talmud says, the highest form of wisdom is kindness. We are but one in experiencing the complexities of life. We each carry our own burdens, we each have to climb our own mountains. Autism may have been brought to our lives so that we may know how to value people more, be less judgmental, be more accepting of each of our individual eccentricities and plain differences. As we rally on the advocacy of spreading autism awareness, we must not forget the basic premise of our earnest admonition-- kindness. We are pleading people to be kind to our children by having an open mind and open heart, be more accepting of them, be educated enough to help them the right way, and if they choose to be, they can be advocates themselves of our children and other children with special needs. We are but one humanity, regardless of race, nationality, country or continent. We draw strength from each other. We draw wisdom from each other. And that wisdom, of the highest form, is kindness.

This particular day, all I can say is that the Universe certainly knows what it is doing. Autism at the top of the list.




Wednesday, August 29, 2012

To Those Who Can

It was the first time I saw frustration clearly etched on my little one's face. He wanted so bad to tell me something, to just blurt out the right words, but he couldn't. And I couldn't understand or guess what he wanted. Picture this, he gripped both my arms so tight, his eyes looking straight into mine, his lips struggling to form words. And all I could do was tell him, "It's okay, darling, what do you want? Show mama." Of course he couldn't tell me what he wanted. And for reasons I learned only later that night, he could not show me. He cried so hard and screamed that I carried him in my arms and tried to soothe him, singing to him, rocking him, bouncing him on the ball. His body weighed heavily on my arms, but at that moment, I felt like I was carrying an 8.8 pound baby that he was four years ago. It took him almost half an hour to calm down. When he finally did, I let him play with his favorite app on the iPad. He then proceeded to carefully place his 3 rubber sharks and 3 straws on top of it. He looked at his arrangement thoughtfully, and started to cry again. A light bulb went on inside my head. Where were his three other sharks? I quickly looked for it, found it and gave it to him. Then I realized, how could he show me what he wanted when he didn't even know where it was? I didn't even know where it was.

It's at times like this that I would like to throw a huge rock in the form of a very specific question at the universe. "Why does autism take away the most important part of human life? Why the language impairment? Why?..."I don't even want a scientific or a spiritual answer. It's just a question that I would like to pose to the entire world. At the same time, it is an earnest admonition to the rest of the human race who can speak, who can communicate, to the parents who complain how their kids can talk non-stop, to the teenagers who are so engrossed now with the techie world, who can't even look you in the eye when you talk, who can send thousands of text messages a day, but cannot answer a simple question with a straight answer.

It's quite simple, really. All I want to get off my chest is this: Please do not take for granted your gift of speech, your ability to verbally communicate your needs, wants, hopes, dreams and aspirations. You can speak. Take care of this gift. It is a gift, a privilege I believe, that many do not realize the value of. Give value to your ability to communicate. Choose your words carefully. If what you are about to say is not even a fraction better than silence, then keep quiet. But when what you want to say is of the utmost importance, say it. Because your brain is fully functional. Your motor planning well-oiled, well-greased. Because you can. Simply because you can. Appreciate what you have-- the ability to speak, the ability to express yourself clearly. Appreciate it because you must. Because there is no other way to give back to the Universe what you have been given.


Monday, August 13, 2012

Critical Thinking, Declaration of Independence, And of course Love...

A brief but meaningful conversation with a grade 4 student. A thread of conversation with an old high school teacher. And an assertion of independence...a declaration if you like.

These three scenarios swirled around my head as we headed for home. Morgan and I. He did so well in his speech class today, articulating the words for his biscuit, "Grr-hmmm" (graham), "eyes", and the sound of his favorite farm animal, goose, "wak-wak". Another blessing. Another wonderful, wonderful moment to be thankful for. While we were nearing our house, a question popped inside my head or more like a question asked by most parents especially when their children are newly diagnosed, reappeared. "Until when will my child need therapy?" The real question and worry behind this question is really about the heavy burden of the finances that go with therapy, special education, check-ups, tests and such. This disorder, after all, do not affect only the "financially able" sector of families. And even with those who are supposedly "financially able", it is still a concern not to be taken lightly. Another reality and perhaps a more important one than money is whether our children will ever be able to recover from autism, will they ever be able to be included in society? Will our children ever be considered "ok" according to the norms of society?

So until when will our children need therapy? Until when will they need help? The answers differ variably depending on the progress of the child. All parents are hopeful that their children will be mainstreamed, enrolled in regular school eventually, included in the normal society, be able to participate productively in the community as relatively "normal" individuals. Some of them do get into mainstream education. Some of them don't. Some of them excel quite well when put in the regular education with ever consistent follow-up at home and from the therapists. And some of them function well even without the mainstream education. And some of them will need therapy varying according to their needs for as long as they live.

Where am I going with all this? Let me describe the three scenarios wandering about in my head right now.

The brief but meaningful conversation with the 4th grade student.

Let's call him Francis (not his real name). Francis used to have socialization classes with us at the center for several months last school year and the school year before that. He was diagnosed to have high functioning autism, commonly known as Asperger's Disorder. As with any "aspie's", he had considerable challenges in socialization particularly on empathy. The ability of a person to put himself in another one's shoes. It would range from as simple as grabbing a pen because he wanted to borrow it instead of requesting permission first to more serious ones such as when he is teased, he reacts to the "bullies" by being physical with them instead of informing the teacher. There was a point in time where we feared we had to advise his parents to transfer him to a smaller school. But thankfully, the parents really did their part in following through at home, being consistent with him with the social skills training. More than anything though, his parents gave him all the love and unending patience and support. And that I think, did it. They willingly persevered. So when I met him again in the main campus, I asked how he was. As bluntly as he could possibly answer, he replied, "I'm okay ma'am Bea. Some classmates still tease me but I tell the teacher right away." "Wow! Good job, Francis!" He smiled. I further said, " We miss you at the sped center. Don't you miss your sped teacher?" To this question, he responded, in a matter-of-fact tone, "No, Ma'am Bea. I don't need her help anymore." At this reply, I smiled with all my might, so proud of him and at the same time so amused at his reasoning and trail of thought in answering my question. Well, yeah sure, clearly, he still has some issues on empathy, bluntly telling me that he needs no help anymore when I asked him whether he missed his teacher. But to actually assert himself, that he's doing alright, that he can already manage, is one big milestone achieved for this 10 year-old kid with Asperger's. Wait, let me rephrase that...This smart 10 year old kid.

Next scenario. A short thread of conversation with an old high school teacher. Let's call her Miss A. She was my World History Teacher in senior year. And she gave me a D in current events the final level of exams. Yes, a failing grade in that itsy bitsy area of learning in Social Studies. But it's okay because I deserved it anyway. I was an apathetic student back then with no intention of learning about what went on in Philippine Politics. She drove us nearly mad with her constant grilling to think analytically, think critically, understand the motivations, understand why kings conquered nations, so on and so forth. In our oral exams which we called "conferences" , we knew better than to sit there and not be able to provide good answers to the questions she bombarded us with. And when I mean good answers I mean, you better know why your answer is like that because she is sure as hell gonna ask you why you came up with that answer even if it was correct. Our recent thread of conversation went on like this:

Me: Miss A, you look as youthful as you did 15 years ago when you taught us World History.

Miss A: Oh no, An, I feel like a hundred years old. Especially with the students here (foreign country, wont' mention where) very "badlongon!" (naughty or undisciplined)

Me: Lupig pa sa ka badlongon namu Miss? (Even naughtier or undisciplined than we were before, Miss?)

Miss: Wa pa tawn mu ka one fourth nila! (You were not even more than one fourth naughtier or undisciplined than them)

I am now nearing 32 years old, I have a family of my own. And my World History teacher is still teaching students, living out her passion, no doubt, drilling into their heads to think analytically, think critically, think well. She is one teacher who never gives up despite the type of students she handles, foreign or non-foreign ones, naughty or well-mannered ones. I will always be grateful to her. I will always remember her gumption and passion. She taught me to find what I love, do what I love and to do it well. And if somebody will ask me if I miss her, my reply would be and emphatic "yes!". Unknowingly, she has become one of my mentors of which I have only realized her true value now that I have my own family,two boys to raise, and autism in our lives to deal with everyday. Because mind you, every single day, I have squeezed my mind like one who squeezes an orange to make orange juice to understand my boys, understand the workings of autism on the brain, understand the motivations of people I deal with almost to the point of being psychic. Now isn't that what you call critical thinking? Thank you Miss A. :-)

Third scenario. This afternoon. One of our students arriving at the center saying, "No more sped teacher. Only Teacher Ingrid and Teacher Mary (not their real names)." This kid was the first one to be mainstreamed from our center. He has done so well in regular class since. But his neuro-developmental pediatrician has not recommended his parents to stop his special education classes yet since he still has some areas to work on. But adamantly so, he feels, like Francis, the smart 4th grader, that maybe he doesn't need help anymore too. Another assertion, declaration of independence. Again, I smile at the thought with pride and hopefulness. I expressed out loud, " We'll get there soon." His mother added, "In God's perfect time." He then went inside upon his sped teacher's prodding.

Francis and our kid at the center asserted that they don't need the sped teacher's help anymore. I miss my old high school teacher. Two very different reactions, it may seem to be. But when I look really deep enough, I think these two kids share the same reaction as mine. Even with autism on the front lines, their assertion and declaration of independence is actually a way of showing their therapists and teachers, " Look what you've taught me. Look how well you've taught me. I can do it now. I can do it on my own." And I think that this is by far a greater show of appreciation for all the teachers and therapists who helped them come so far.

So in the end, while it does matter until when therapy and special education services are need for our kids financially, the bigger question, the bigger reality that matters is how much our kids have achieved right until this very day. How far they have come, how many milestones they have reached, how deeply they have connected with our world with their own hard work and perseverance. Living with autism has taught me one good lesson, and that is to celebrate moments as they happen, wonderful ones even the not so wonderful ones. And it doesn't matter how long therapy and special education is needed for my two boys for as long as they continue to help my little prince and feisty king accomplish everyday milestones.

There's this slogan that I love: "UNDERSTANDING AUTISM IS NOT THAT DIFFICULT. START WITH LOVE AND THE REST WILL FOLLOW."

Start with love, continue with never-ending patience, support, perseverance. End with love and all the questions in the world would not matter. The rest will surely follow--our children's progress, growth and improvement will happen.

I remind myself of this everyday. And I am sure in my heart of hearts, the day will surely come when my two boys will also emphatically and adamantly say, "I don't need help from my teacher anymore." In God's perfect time...

Tuesday, August 7, 2012

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.

Tuesday, July 31, 2012

One Blessed Sunday Morning

[A beautiful, beautiful Sunday! With the boys' three grandmas, (my mom and two aunts) off to church we went! Morgan sat down the whole time! Garret sang with the choir and moved his hands to the beat like a world class orchestra conductor! Standing up when it was time to stand up and sitting down as we listened to the readings and homily...and when the priest admonished, "Go in peace to love and serve the Lord." I replied with all my heart, caught in my throat, not with a "Thanks be to God" but with a " thank you, thank you, thank you God." And how my heart was truly at peace....I wish I could have captured such wonderful moment on camera...but it's okay, the images of my two boys going to church like that will be forever immortalized in my memory.]

I was planning to write a blog about this even before I decided to post it as a status message instead. But the joy in my heart was just too full to be contained to wait for the time and mood and the right words to write a blog about it. So, there I go. Sometimes, you just have to let it out as soon as it comes for fear that that "moment" will go away. :-)

But, here I am, writing about that beautiful Sunday morning mass with my boys and my mom and two aunts.

I mentally prepared myself that most probably, Garret and Morgan won't be able to stay in the church the entire time and we would have to leave and wait for their grandmas at home. Why? The reasons are too many to mention. But I will mention some of it anyway for all intents and purposes of letting it all out.

1. It's been a long time since we've been to this particular church. A.k.a. NEW PLACE

2. In the church are sights, sounds, people who are unfamiliar. A.K.A. NEW STIMULUS, NEW SENSORY INPUT

3. To remain in one's place for the entire hour in an unfamiliar environment, is quite a feat especially for my little one.

4. The sound of the microphone, the organ, etc. may be too loud for my boys. A.K.A. Possible Sensory overload

5. The change in routine. We usually have a different a schedule on Sundays. A.K.A. Challenged flexibility and adaptability.

Theoretically and proven many times, in order for our kids to be well adjusted to a new event, new place, new routines, to avoid any kind of "strong" reactions, we have to give them time to adjust and adapt.Thus we have our Adaptation Program at school. Visits to the barber shop, dental clinic, and others require that we show them photos first before actually going to the place. And when we do go to the actual place, we have to let them feel the place at their own pace. Little by little, our kiddos will eventually sit down on that feared barber's chair or dental chair, or whatever chair they need to sit on in that particular place to visit.

So the time frame I had to orient my boys that we we were going to church took about 10 minutes as I hurriedly searched through the internet of photos of our city's cathedral with different angles if possible. Garret nonchalantly glanced at the photos and proceeded to his playing the keyboard. Morgan? I think he just passed by the photo not really interested in looking at it. As we boarded the car on our way to church, I kept repeating the rules to them, "Garret we will go inside the church. It's a new place but it's okay. When we're inside, no running, no shouting, no kicking. And Garret and Morgan will sit down and be quiet. " In the span of 10 minutes equivalent to the amount of time of the drive from the house to the church, I must have repeated those lines at least four times. I do realize though that the preparation I gave them was hardly ideal and clearly contrary to what they are used to in our Sped program. Thus, I called on a higher power. "Please, God let them understand my words. "

When we finally arrived in church, we walked from the parking lot to the inside,sat on the pews on the back portion of the church and settled in. Morgan was a bit startled by the place so I told his caregiver to carry him. "It's okay Morgan.", I comforted him. He settled in quietly, his eyes inspecting the place all over. Garret scooted over to his seat, already smiling, eyes wide with interest. I admonished one last time, "It's okay Garret. Very good sitting down." I was crossing my fingers, literally and figuratively.

When the entrance hymn resounded in the halls of the cathedral and everybody stood up, my little prince stood too and searched for the source of the sound, smiling, his hands starting to beat to the rhythm. When it was time to listen to the readings, he sat down as well on his own. No instructions from his mama. I finally couldn't hold back my tears of joy when the pre-gospel hymn was sung. "Hallelujiah, hallelujiah...Wikain mo, poon nakikinig ako, sa iyong mga salita...", the choir rang out. Even before the commentator said, "Please rise.", Garret rose to sing with the choir, his hands in full swing, beating to the tune. You read it right. Garret sang. With the choir. With his own words of course. But he sang. Smiling. I am one hopeless "pusong mamon" mama. I am too choked up right now writing this. At that moment, my throat became so painful from holding back my tears which I failed to do so. Hastily, I wiped them away with my hand and looked at my son with so much joy.

Garret and Morgan behaved so well until the very end of the mass. At times, when Garret couldn't see the altar because of the people in front of us blocking his view, he would attempt to run, but then when I reminded him gently, "Garret no running." , he went back to his place in the pew. My boys behaved so well even when we had to sit down again to listen to the 8 announcements said in the vernacular (which made it a tad longer to finish) at the end of the mass. The priest finally gave his final blessing and out we went from the church. No tantrums, no whining, no meltdowns, no sensory overload. My boys went to church. And if I may just say it, they behaved so well, even better than the other neurotypical kids there! All the doubts I listed vanished into thin air. Every once in a while, a breakthrough occurs. And this was one beautiful, wonderful, amazing breakthrough for both my prince and king.

In our autism awareness campaign with our senior high school students two weeks ago, I was asked by one of the students during the open forum, " Ma'am, what has been your greatest achievement in raising your son?". I was made to ponder for a moment at his question. Half shocked at the kind of question asked by a 16-year old, the kind that makes you really think. I could only muster then a "wow..." followed by " well, with the help of the sped teachers and therapists, I think it is that Garret can already understand simple instructions. When I ask him to do things like, Garret, get your water. He can certainly do it." Looking back, I think that as much as I have done my part in making Garret learn to understand things, a huge part of the credit goes to Garret himself. He has tried so hard, learned so well, come so far. So if I am to reflect on what beautifully transpired last Sunday, all I know is that Garret did a great job. Another question followed quickly and asked by another student quite simply, " Ma'am, is it hard? Being a mom of a child with autism?" I remember answering, "Yes it is. With all the challenges, but the rewards are great. Remember, nothing worth having is ever easy. When my boys smile at me as if joy is their last name, when my boys achieve simple milestones, all of it being "hard" goes away." That Sunday morning is certainly one of the many things why I persevere for them. Why I muster all my strength and courage to carry on despite the hard rocks autism throws at us. Two more questions were asked, "Ma'am, do you ever ask God, 'why?'" and "What has been the greatest lesson that you have learned being an autism parent?" To both questions I answered, Yes, every single day, I ask why. Why my boys? Why our family? Why autism? And the answer it seems is this: So that I can learn the greatest love of all, patience, understanding, compassion, and gratitude for every single blessing and burden, and so that I can help other parents and families who are going through the same challenges that we do every single day. And maybe, simply, just so I can be a better person, not just be a better mom, or wife, or coordinator, or counselor. Simply so I can be a better person.

I recount all the details of that Sunday everyday since that day. Because it tells me we are on the right path. That I have done right with my boys. Yes, it is hard being an autism parent. Then again, I look at both my prince and king, and my life is renewed with meaning. They are my meaning. They themselves are the answers to my "why's", They are worth every single hardship and challenge. They have taught me what life is really all about. And that blessed Sunday morning, it seems, has given me the greatest reward of all so far. It has affirmed and validated me that I am doing things right. And what better way to be thankful than to return all the gratitude, glory and praise to the Universe. When I replied with all my heart to the priest's admonition of "Go in peace to love and serve the Lord." Maybe I wasn't the only one thanking God. My boys, in their own way showed their gratitude to all the Universe as well.

Wednesday, July 25, 2012

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!

Friday, July 13, 2012

Days Like These...


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

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

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

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

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

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

Saturday, July 7, 2012

So This is What Motherhood must be...

A distant but very vivid memory...Elementary 1990. After a long day at school mom would pick us up and on our way home, when the rain would beat down and fog our car windows, after boring myself with drawing letters and shapes with my forefinger from the inside of the car, I would usually fall asleep on my mom's lap at the backseat. Her hand would gently stroke my hair and she would sing and hum as I would fall into a nap. With the traffic of Don Jose Avila Street to Cabangcalan, Mandaue, I had pretty much had a quite amount of time to enjoy my slumber.

Fast forward to college. 1998.In between classes I would usually kill the time at the library. Yes, I'm quite the geek, thank you very much. But not really, the library was just the most conducive place to hang out what with the air-conditioned facility with big tables, books, quietness. Did I mention big tables? This was not only for studying, you know, sleeping was one of the activities done in this conducive place for learning. Anyway, I'm getting off track here. Memories do that when they come in a barrage of flashbacks. Moving on. In my free time I would keep at it with my "poetry" or just writing words I felt like writing on my blank journal. Yes, there was no facebook yet during that time. Blogs were like from outer space for me. Internet was even an obscure concept for me. So journals and diaries were the ways to express my "creativity". In one of my presumably created poems, I wrote about how I would become a mom myself in the future and my little girl after a long day of playing at school would fall asleep on my lap and I would hum her a little song that would carry her into a deep slumber. At the time, I merely imagined what it would be like to finally be a mother. To hold a child in my arms. One to call my own. I read it again a few years ago, already with Garret in tow that time and I was amused at how cheesy my choice of words were. But at the same time I was amazed at how the emotions that brought forth that writing back then were as clear as they were in the present. Somehow I think even before I knew one of the things I wanted to be when I grew up was to become a mom.

July 2012. Last week. With Morgan's sleeping pattern gone awry and completely unpredictable, we have tried every possible strategy. Don't let him take naps in the afternoon so that he would sleep straight in the evenings. We'd have heavy work activities in the afternoon so that he would tire out. We would let the caregivers sleep beside the boys so that they won't have a chance to whine and make "langi" with mama around. Sometimes it worked, other times it just wouldn't. I've exhausted all reasoning, blaming all this on autism or is it just one of those "youngest sibling" syndrome manifestations that my little one wants all the attention. I don't know which is which already. Anyway, in one of our "strategies", with no nap for my king, we drove around the city. And what do you know? Morgan's eyes were getting droopier by the minute until he finally fell asleep. I positioned him gently on my lap. He curled up like a baby, breathing deeply. Snoring even. We drove around till the sun went down.

I realized, this is exactly what I wrote about many years ago in that college library.Having a little one curled up asleep on my lap. How deeply different it is to be the mother this time. How wonderfully different it is to be the one who lulls your child to sleep. I read once that one of the most beautiful joys you can ever experience is having a child fall asleep in your arms. Very true. I think it has something to do with that amazing power, that intuitive ability to be able to allow your child be in a restful state, to see your child in his most peaceful aura, to see one of the most defining moments of what you define as joy and the very purpose of your life as you know it. But most of all, I realized all at once this profound yet simple declaration, "I am a mother now." Of course it has been 8 years since I've been a mother. I realize that every single day. But to remember my musings way back when I had the least maturity and now with this reality. I am amazed. Mostly because motherhood has been so beautifully fulfilling, albeit bittersweet at times but beautiful always. One of the most amazingly life-changing experiences in a woman's life. To be able to care for another human being with all your heart and soul, body and mind (lawas ug katarungan). And more than anything, I realize with my heart in my throat this time, how blessed I am to mother my boys, Garret and Morgan, my two handsome, amazing pieces of royalty. They live and breathe the very essence of life itself-- mystery, uniqueness, pride, humility,kindness, compassion, courage, fortitude, love, above all. And to witness these every single day in my boys' faces asleep or kicking about in the day-- the Universe has been, and is, so good to me.

Even before I knew I was going to have a family of my own. Even my close friends from high school predicted that among the four of us, I would be the one to go through this journey first. How right they were. I knew that. They knew that. But what I didn't know was how my life was going to be changed so deeply, so profoundly, so resonantly, by being a family woman, by being a mother. And what I didn't know was that even if I was given a chance to change one thing in my life, this would definitely NOT be it. Even with autism in the picture.

Last night. July 6, 2012. I finally found a way to make my feisty king sleep. I carried him in my arms and bounced him as usual on the vestibular ball, but this time I sang to him a lullaby..."Rock a bye baby on the tree top...." It didn't matter that it was already past 12 midnight. Morgan finally fell asleep in my arms, breathing heavily, snoring just a bit. Transferring him to his bed, I breathed deeply. As I closed my eyes I once again thanked the universe for everything in my life. Looking over at my two boys, Garret on his bed on his tummy, Morgan on his back, the most peaceful look on their faces, just like a new born baby. So this is what it feels like to finally be a mother. Heavenly.

Postscript... We beat the sleep monster of autism last night...So this is what it is like to be a mother-- to find all ways and means to beat the crap out of whatever hurts or disturbs my boys' peace. Whether you call it autism or by some other name, motherhood beat the crap out of it last night. :-)

Thursday, July 5, 2012

The Beautifully Bittersweet

Yesterday, I had to play the antagonist again in my Little Prince's world. I had to disturb Garret's place of calm and peace and routine. After his sped class in the afternoon, we went to the big school together with Morgan. Morgan, with his naughty little butt decided to take a nap by 4:30 p.m. When I say "decided" I mean, whining and crying and wanting to be carried, and just one step before full-volume crying occurs. So I had to say to Garret who was already so at peace in the social hall, sitting on the table, taking in all the hustle and bustle of the students playing, etc., "Kuya, we have to go home na. Morgan is sleepy. We need to go home na in a while ha..." As expected an adamant "ah!" met my requesting of him. I won't go into the details of what happened next but let's just say a lot of heads turned and one of his cousins asked very concerned, "Why tita? what happened?"

Ever had one of those moments when you were single and you saw a parent and a child in a mall or grocery store, and the child acted out and you judged immediately why the parent could not discipline her child? Well, this time, I wasn't the observer. I was the unable-to-handle-her-child parent. But this time, I knew Garret was not acting out. It was just a case of "It had to be done" kind of thing. I had to force him out of his peace bubble because Morgan wanted to sleep already. And lately, his little brother's sleeping pattern has gone berserk that I don't know what else to do to make him sleep well at night. Garret yelled and slapped my arm. Morgan scared of his kuya's yell, cried all the more. All that went through my head was " Okay, don't panic. Just breathe.Don't mind the stares of the people around you. Focus, keep calm. Hold it together." Garret slapped me one more time after which I held his shoulders and emphatically said, "GARRET!". He fell silent and whined. I almost forgot, autism does that to my boys.

Of course Garret couldn't understand why we had to go home so early when in fact he was so used to going home by the time all the students in the big school went home. He couldn't understand why he had to go home when the final bell did not ring yet. He couldn't understand why Morgan had to cry, why Morgan had to sleep in the middle of his "big school time". Morgan, on the other hand could no less understand why his body just wouldn't sleep during his usual 1 pm nap time. He couldn't understand why even at 12 midnight, he still couldn't sleep. And he couldn't understand why no amount of bouncing on the vestibular ball and rocking on the rocking chair with mama could not make him go to sleep.

All the way home, Garret sobbed. I could just see and feel his disappointment and it tore my heart apart. When we arrived home I held him in my arms and we stayed in the rocking chair as I tried to soothe him, telling him, "It's okay Garret...I'm sorry. I'm sorry." It took about half an hour before he finally calmed down and fell asleep. When I transferred him to his bed, he woke up already calm and seemingly comforted. After another half hour I prepared his dinner and I kept telling him, "Sorry Garret ha..." He just sat down on his chair and softly echoed my words in a sing-song voice, "sorry, sorry, sorry, sorry, sorry." Yes, 5 times. I didn't know what to make of it. I just felt relieved somewhat. Maybe it was his way of saying, "it's alright, mama."? I want to believe that it is. He may not understand all the reasons why we had to go home earlier than his usual routine, but I want to believe he understands me saying sorry I had to do that and he had to be frustrated and disappointed.

And what of Morgan? Of course, sound asleep till 7 p.m at which time I had to force him to wake up, me thinking, so he wouldn't stay up too late later that night. And of course, when we put the lights out at around 11 p.m. and I drifted of to the REM stage of sleep, he began whining again and the whining turned to crying. I flipped the lights on and put on Barney. He then got his wooden shapes puzzle and got all the shapes and put them back again, over and over, which amused me somewhat because I thought, "well, at least something productive can come out of this episode. He'll be able to master his shape sorting skills." On the other hand it was as if he was just doing this to tire his eyes out. Again, I won't go into the other details of what transpired next. Suffice it to say that he finally climbed into bed on his own accord at 2:30 a.m. and me finally succumbing to sleep at 3 a.m. I wanted to berate something, someone, anyone, anybody so badly, autism, specifically, the universe next with my adamant opposition to this whole sleep deprivation that autism does to my little boy. But I held back, thought twice. Nothing good really could be gotten out of it. Just breathe. Don't panic, I told myself. Then I remembered something a friend wrote a year ago in her blog. I remembered her strength and resilience and her resolve to face the sleep monster of autism head on one sleepless night. And I thought to myself, " If she can do it, then I can too." I drifted off to sleep, albeit restless, but sleep nonetheless.

So this morning, as you can imagine, light-headed and disoriented, I woke up at 8 a.m. already planning to spend the day in my pj's. At 9:30, king Morgan woke up went out of the room and he approached me wanting to be cuddled. I told him, "Kiss mama first." I puckered my lips and he followed suit giving me the sweetest kiss ever and only after looking at me in the eyes and smiling his toothy grin. Of course the lightheaded sensation wore off almost immediately. And the disorientation was replaced by something clear and apparent as the morning sun---true love, my friend, Kary told me.

This is what will get me through times like this. This will make me defeat this sleep monster and frustration monster of autism. My love for my boys. I will carry everything with fortitude. I will be strong for my boys. I will not complain. I will think positive thoughts. I will not care about what other people will think of my parenting skills. I will parent my boys as I see fit. I will give them all the love and support they need. I will keep calm. I will not panic. I will breathe deeply and I will carry on. And if my little king needs me to stay awake with him till 3 a.m. , then I will and tell autism to its face, "Show me what you got 'coz I'm ready for you."

These are just a few of the bitter sweet moments in our day-to-day life, living with autism. Thriving with it, actually. I say thriving because every dark moment has been an opportunity for discovery and learning, about myself as a mother, as a partner, as a woman,and simply as a human being. Every monster we face, we have overturned it to become a source of strength and understanding and knowledge and empathy for other parents who are going through similar difficulties. Every experience that drive us to the brink of our patience and ability to keep it together make me solidify the belief to be more accepting and nonjudgmental of other parents, other people for that matter because we each are facing our own battles.

Frustration, sleep deprivation, bitter moments they are, but beautiful, what with the lessons they bring and the strength and character they draw from the very core of my being.

For all autism parents out there, I hope you too shall allow yourselves to be strengthened and not defeated by whatever monsters will come out to face you. I hope you shall choose to be positive. I pray you will have the grace to keep it together, not panic and be calm. I pray that you will in turn have more empathy not just for other people but for yourselves as well. You are doing your best. And your best is enough for your children, for your family.You are strong and even if you feel as if you have lost your balance and center, you are still okay. And you will carry on.