Thursday, October 29, 2015

Conversations Like This

I enter the Playgroup classroom. The four-year old kids greet me. I approach them one by one in their seats and ask them about various things-- their new hair clip, their shoes, whether they're happy or sad. I approach a little boy named Apa. He usually doesn't respond to me. He purposefully drops his head and turns away from me whenever I try to talk to him. So I expect the same reaction. I begin to move on to the next kid when I heard him speak,

"We have a big house."

His voice was soft but clear. I turned my full attention back to him.

"Oh you do, Apa?" I prodded.  "Yes and we have a shwimming poo."

He was looking at me now, full eye contact, head no longer bowed.

"Wow! And do you know how to swim?" My eyes widened as I awaited his next reply.

"Yesh like this." Arms  poised in a freestyle stroke in the air.

"And we have a dog. Her name is Allie."

I smile and wait if he would share with me more things. He decides not to and smiles at me. I move on to the next kid. And we talk about how her father from the UK will buy her an Elsa dress from Frozen.

Everyday I do my rounds at the Preschool. I prod the kids and ask them questions. Most are silent, surprised that I ask them about nonsensical things, it may seem. Some come out of their shells and relay to me stories unending. The day ends. Another begins. And I make sure we will have many more conversations like this.


~~0~~

It is late afternoon. Garret and I just arrived from our walk in the neighborhood. Morgan sits quietly on the sofa. I sit next to him. And I tell him, "Mag istorya ta dong." (Let's talk, Morgan). He eats his bread sticks, his back towards me. I begin our "conversation". 

"When you woke up from your nap, Mama and Papa were just outside having coffee. Kuya Garret was playing in the living room. Nanay Lucy was toasting Kuya's bread. We didn't leave you alone. We were just outside the room." 

"Hmmmm," he says, his back still turned to me.

I continue,  "I love you. Don't cry anymore when you wake up and find yourself alone, okay?"

"Hmmmmm," he says again.

"You are my big boy. You are my good boy. I love you." 

I kiss the back of his head. He turns to me and smiles. He holds my cheek with his two hands and giggles. I hold him close and plant kisses all over his chubby face. He giggles some more. 

Garret sitting nearby looks at us. I ask him to join us. He willingly does. Morgan on my left him on my right. I put my arms around them and kiss their foreheads. 

After a short while Garret stands up and hums in perfect tune, "Mary had a little lamb..."

Morgan looks at me again, full eye contact and says, "Dee-ya". (Bea)

He hears me. He knows I love him. He understands many things. And we will have many more conversations like this.

~~0~~


My work in school, now that our sped center closed down, revolves primarily on assisting our preschool supervisor. One of the things I love the most about it is the innumerable things I learn from my interaction with the kids. Honesty for instance, their eyes lighting up when you say something that sparks their interest, and after this,  their learning coming in waves. But mostly, the conversations I have with the children are the most significant part of the day. It tells me how unafraid or afraid they are of expressing what is in their hearts and minds. It is where imagination, creativity and eventually critical thinking take root--to think outside the box, to tell stories that may be out of this world, stories that are borne out of their fearlessness, to share their individual truths no matter how nonsensical they may be without fear of reproach or ridicule.  I can only hope that when at home, their stories find a safe haven. I hope too that their questions and sharing not be met by, "You ask too many questions" or "Keep quiet" or an absentminded, "Yes, uh-huh," just to shut them up. And let's not get started with how smart phones, iPads, tablets, social media are replacing personal interactions.

Both my boys are on the autism spectrum. Language impairment is a significant part of our lives. We converse in sounds, songs, gestures, laughter. Almost instinctive really, I might say. So I take the work I do in school, interacting and learning with kids who are neurotypical / normal on a deeper, more personal level. Suffice it to say that I take joy in knowing parents like those of Apa and the little girl above take time to create a personal relationship with their child, creating an atmosphere where their child's curiosity is welcomed, questions embraced, imagination encouraged, simple conversations deeply appreciated. And all I can say to those who choose to be otherwise, "Open your eyes and see what you have. Your children are gifts from the Universe that are meant to be loved,  fully appreciated." 


 ~~0~~


Everyday I do my rounds at the Preschool. I prod the kids and ask them questions. Most are silent, surprised that I ask them about nonsensical things, it may seem. Some come out of their shells and relay to me stories unending. The day ends. Another begins. I make sure that there will be many more conversations like this.

 ~~0~~


One afternoon in our home, I told Morgan, "Mag istorya ta dong..." where his replies were a quiet, "hmmmm" and an intent gaze only.

Seeing Garret, looking at us, I ask him to come sit with us him on my right. Morgan on my left. I put my arms around them and kiss their foreheads. 

After a short while Garret stands up and hums in perfect tune, "Mary had a little lamb..."

Morgan looks at me again, full eye contact and says, "Dee-ya". (Bea)

In not so many words or even none at all, I know in my heart they hear me, they know I love them, they understand many things.  And certainly, we will have many more conversations like this.



Monday, September 28, 2015

One Fine and Marvelous Day

He stands in a corner engrossed in his toys. Teddy bears in one table, picture cards in another. His toy ladle and cooking pot is lined up with his cars. He hums a tune. He holds his boat and flicks it. He is fascinated by his flicking. From afar the boat is already a blur. For him the same blur is his source of calm, order. It is his play. It is his world. 

I finish making his toast bread and wonder if I should continue my readings on mobility. I decide not to and pick up his basketball. I begin dribbling. He does not mind me. I call out to him, "Garret come, play with mama." He looks up briefly  then continues to flick his boat. I continue dribbling, and shoot the ball in the basket.  I prod him again. "Garret it's your turn." I vary the tone of my voice-- Sing-song. He gives in after a few moments, approaches me and I pass the ball to him. He catches it deftly and begins dribbling it immediately. We go back and forth, my turn, his turn. No smile at first then eventually a grin, him forgetting his toys and actually begin to enjoy playing with me. For thirty minutes we play ball non-stop. Laughter. Enjoyment resounds in his laughter. I laugh too. We laugh together. We are in each other's company, basking in one another's laugh. All sweaty, he gets his water bottle and rests. I rest too. But my heart is beating like that of drums emanating a festive symphony of gratitude and wonder at the miracle that just transpired. 

Not too long ago I wondered whether he will ever know me as his mama. Not too long ago I wondered whether he would know my love for him. Not too long ago I wondered whether he would ever reach out to me, acknowledge me. Not too long ago I wondered about many things. Today was the future I wondered about, that I so feared, that I was so uncertain of yesterday. 

And today, as I invited him to come enter my world, my son laughed and played with me. 

Today was one fine and marvelous day.

Thursday, August 20, 2015

Enough



This is a photo of Garret doing a Farmer's Carry with a 10-pound kettlebell in each hand, for our functional movement exercises this afternoon. He started with a 7-pound kettlebell just barely a month ago. Now he can carry 3 pounds more in each hand. But what is more astonishing is how he responded to what I requested of him. I asked him to pick up the kettle bell one last time so I can take a good photo of him. Without hesitation, he picked up the kettlebell looked at the camera, stood still and after I clicked, he put down the kettlebell and went back to our room. 



"Come, Morgan. It's time to climb. And we'll hold on for five seconds, okay?" Morgan quietly and willingly approaches the wall, positions his hands and feet on the holds and held on for a solid five seconds. With no help from Mama. Morgan's understanding of the world has expanded clearly shown in the quickness and relevance of his responses. 

Since May this year, we've decided to take the personal reins of our two boys' education as our sped center has reached its final journey. And now more than ever, never have I been more fulfilled as a mother. This is not to say that it is easy. It never is. If any, the challenges become harder. But one thing is certain-- our joys AND ponderous moments are richer in meaning, realer, deeper in purpose. 

I remember the day Garret was first diagnosed. I broke down. Wept in the doctor's clinic. The barrage of questions came. How will we endure? How will we overcome?  There were no answers, only a certainty that the future arrives one day at a time. Today, I remember  this is how we decided to live our lives from then on, to do the best we can one day at a time. 

I reflect now too that in order for us to have arrived to this day, doing the best we can meant we gave value to the present moment, to value presence. To be with our boys in the real sense of the word. To eliminate what is not important, what does not add value to our lives. To focus on what does.

So when my vision of the road ahead blurs as it surely will now and then, I only have to remember how we have come to this place, this very moment-- Presence. When I am present, I am able to see with so much clarity how much Garret and Morgan have come so far. When I am present, I am able to know what they truly need. When I am present, I am reminded that what they need, what we need is what we have right now. When I am present, I know in my heart that what we have right now and what is in store for us in the days to come is and will always be enough.

Thursday, August 13, 2015

Bigger

The world is too big for us, Mama.
My boys seem to say

The sounds are too loud. It's not that we don't listen. We do.
To everything. All at once. Oh how they hurt our ears.

The grass is too sharp for the soles of our feet.  Some shoes
are too tight, socks too rough. Shirt tags are like
pinpricks on our backs.

People are too loud, move too fast.

People staring at us-- too painful. Please don't force us
to make eye contact.

The world is too big for us, Mama.
My boys seem to say.

Oh, my boys, I'll make everything small 
for both of you
I'll hand you the world in bits and pieces
slowly, gently, softly.
And know this, my boys, your mama's heart
is bigger, greater than this world 
that beleaguers you. 

Know this my boys,
I. 
love.
you.




Monday, July 6, 2015

Beyond Words

Garret sees the wind in the leaves that dance. He looks at it the way a child gapes in wonder at fireworks. His hands are flapping in excitement. He utters a squeal of delight. His papa asks him, " Are you happy Garret?" "Apee," he replies. 

A moment later a mother and a child approaches coming from around the grounds from their run. The hospital grounds where we usually spend afternoons in overlooks the Ormoc city harbor. Ships are docked. The girl, a little older than Garret,  asks her mother, "I see a big boat, Ma. It usually isn't there. Why is it there?" Her mother answers something I cannot hear anymore but they resume their conversation. 

The scene that unfolded before me made me smile. How wonderful it is for them to spend the afternoon together, this parent and child. How even more wonderful it is that they were conversing. No smart phones or tablets in sight. It didn't even matter what they were talking about, I thought. And then, a kind of wistfulness took over me for a moment. "I wish I could have that." I caught myself. I paused in my thoughts and said to myself. "I am human. And it is okay for me to want this, a normal conversation with my child." 

I take a deep breath and return my gaze to my two boys. Garret continues to bask in the view of Indian trees swaying in the wind. There is only calm and peace embracing him.  He then hums a piece from his classical playlist in perfect pitch. I hum with him. He pauses as I hummed off-key. Then he proceeds to hum again. I smile to my heart's content.

Morgan a few feet away tears leaves. I call him and he immediately looks in my direction. His cheeks puffy and pink. He seems annoyed that I disturbed his tearing. I tell him, "it's time to go home now, Morgan." He immediately complies holding my hand. We walk to our truck. On the drive home he looks at me and grins. 

This is what we have. This is our conversation. Clearly a more different,  quieter one than what other families have. Garret sings. I sing with him.  Garret says, "Apee." I chime in, "Happy boy!"  Garret squeals. I grin back. Morgan looks at me, touches my cheek and smiles. I affirm his gesture and say, "Yes, my love, Morgan is happy too?" In the moments of silence, Andro and I talk, whether it's during one of our joy rides or an afternoon at the grounds such as today.  We fall silent every now and then and remain in our own thoughts. Then we speak if we feel the need to. Our conversation parallel our boys'-- Only the very necessary, only things that matter. 

This is what we have. What we have right now is what we need. And this right here is beautiful beyond words,  beyond "normal conversation." How abundantly blessed we are.



Saturday, June 27, 2015

Our Boys' Two Cents



After a week of rain, the sky finally decided to clear. Garret goes to our garage gym, sits down and gazes at the sky in front of him.  He then stands up, searches for the sun and turns to me, half-demand, half-plea saying, "Walking." How could I refuse? So off we go our usual route. Further up the road, the sun was resplendent in all its glory. I look at my little prince and the joy on his face is  indescribable.

Everyday I marvel at how simple my boys' happiness is. Whether it's Garret showing me a puzzle piece from his alphabet form board telling me with a smile on his face, "V, M, G" Or him saying, "A-pee," after I agreed to put his music back on, or Morgan turning to me to touch my face and grinning his toothy grin, his way of telling me how delighted he is that we were taking them out for a joy ride. Their requests are simple, their verbal language may be limited but their joys, oh their joys, how they manifest it abundantly.

But more than anything, what I remember is that many years ago, I saw how Garret could be intensely immersed in his own world. I worried immensely about how I could break these walls of autism and connect with my son.  I remember very clearly how I would just keep telling him, "Garret, give Mama a kiss," a request that he first responded to, albeit mechanically at the time, and which I kept repeating just to reassure myself that there was a bridge connecting both of our worlds. 

Now? Now we converse in songs, me singing the first line, him filling in the rest of the stanzas of his nursery rhymes. We go back and forth until the song ends. He says to me, "Anana...A-koo," signifying he wants to eat a banana or an apple. Yesterday when his papa said, "School this afternoon with teacher, Garret," he responded without prompt, "Ow-kay."

Unarguably, now is different. Now, he has come a long way. My heart wells up every time I bask in this realization.

Now I reflect on two important life lessons among countless ones that our boys have unknowingly taught me, their two cents for me today:

1.To remember what is important. What is important is simple.  Our boys' verbal expression may be limited by what autism has given them but they communicate their needs clearly in so many different ways. Their words may be small, but their heart is magnanimous. At the heart of it all, joy, intent, courage, hard work and love are what is important.

2. To focus on the goodness in life. To be mindful of the daily miracles of my life: to be able to wake up to another day, to breathe air that nourishes my body, to be grateful for family and friends that are family, to be aware of the minute milestones Garret and Morgan achieve everyday, to celebrate who and what they are every minute. To be in the present moment always.

This is not to say that I disregard mistakes and unfortunate events. Whatever setbacks I am encountering, let it be a lesson on transformation. Using my weaknesses as opportunities for bettering myself. Mistakes only mean one thing-- that change is possible, and where change is possible, life will always be beautiful.
 
The lights are turned off. It is time for bed. Morgan beside me is already softly snoring. I close my eyes and begin my gratitude prayers. "I am thankful for my boys, their good health, their milestones reached. I am thankful for the conversation I had with a dear friend this afternoon..." And then in the darkness of our room, I hear Andro say, "Good night Garret, I love you." Garret responds almost immediately, a giggle in his throat, " I yuv yoo." My heart soars. This right here is what is important. This right here is goodness manifested in my life.

"What you focus on expands. When you focus on the goodness of your life, you create more of it." - Oprah Winfrey





Monday, June 1, 2015

Our Truth

For the first time Morgan notices the mark on the skin of my ribcage. He leans forward and kisses the letters. I am not sure he understands that it is his name and his brother's.

We walk holding hands and he feels the torn calluses in my palms. Scars from the past week's barbell work. He looks at me and smiles. I would like to think he wonders what and who they are for.

When he was born I remember how I cried in utter joy as I saw him screaming his lungs out. The doctor had to wipe the tears flowing down my cheeks.

Three years after, he was diagnosed with autism as his older brother, Garret had been, three years earlier. I remember falling on my knees, all the strength drained out of me, asking the Universe, "Why?"

What kind of life will they live? Will they ever understand the depth of my love for them? Will they ever know who I am? Will I be the mother they so rightly deserve? These were just few of the numerous questions that besieged my heart.

When Typhoon Haiyan struck I held Morgan in the tightest way possible, my heart beating out of my chest as we ran from room to room, our ceilings falling one after another. I could carry only him. Garret had to be carried by our help. Their papa leading the way, clearing the path as best as he could so we could evacuate safely.  When we were safely settled in our neighbor's house, Morgan fell asleep in exhaustion.

A few months after Haiyan we began to slowly recover from the tragedy. I decided to have my boys' names permanently inked on my  body.

A year and almost seven months passed today.

For the first time Morgan notices the mark on the skin of my ribcage. He leans forward and kisses the letters. 

After surviving Haiyan, I decided to redo my life. I decided to become healthier and stronger not only for myself but most especially for my boys. I decided to do CrossFit.

Morgan holds my hands and  feels the torn calluses in my palms. Scars from the past week's barbell work. He looks at me and  he smiles.

Questions still come thundering. The answers do not. But they arrive at the most unexpected moments catching me off guard. The answers are as subtle as the song of the sparrows in our backyard waking me in the morning. They have been there for a long time even returning after Haiyan but I have been so used to their everyday singing that I have allowed noises of doubt and confusion to drown out their music. The answers have been in front of me all along.

Time and again  I have to return to my core and trust these truths:

Life for my boys will be beautiful as it already is today.

They know how deeply I love them maybe not in the few words they can say but more so in the glances full of understanding, in the meaningful grins, in the unasked kisses and in the most unexpected embraces.

They know I am their mama in the many unique ways they say my name.

I may not be the perfect mother but I am the best one for them.

But the most beautiful truth of all is that even as I may be besieged by  more questions in the coming days, months and years, even as I continue to ask "why?" especially during the more difficult moments, even as I may fall on my knees a hundred more times,  I am overcome and redeemed even more by the love I have been given by the Universe through the very nature of their beings, by the love they teach me every single day without fail.  


This photo was taken a week after Morgan was born. Garret was 3 years old. And I was bursting at the seams from the all the mama weight AND the love pouring forth for my boys. 


Friday, May 22, 2015

Where Grace Will Find Us

     One of the  most difficult things about autism is when you see how your child struggles to understand why some things don't work the way they want things to work. You see it in his eyes how the struggle is very much real. You see disorientation, confusion and hurt. And in your heart the struggle is magnified ten times more. You and your child enter into this dark place. This place where the limits of your patience are tested, the breadth of your knowledge of the countless therapies and intervention strategies that your child's teachers and therapists have taught you are being tested, the place where the strength and courage of the both of you are challenged. And over the years as you have learned to embrace this dark place, you find yourselves in this singular moment in time that you were able to diffuse a meltdown or a tantrum. Your child was able to rise above this always horrendous place.

       You then realize how both of you have risen above that dark place. And this is one of the most beautiful moments that you hold dearly in your heart. Because this moment reminds you that no matter how hard life may be there is hope. And hope is where your strength is born. 

       Garret and I had one such moment last night. The details do not matter. Only that at the height of confusion he came to me and I held him, counting calmly from 1 to 10. And he allowed himself to be held. For those of you who are all too familiar with autism, you know a simple hug won't drive the "boo boo" away. In fact a hug might just escalate it. But last night it didn't. I held him and somehow the embrace actually soothed him as I hoped many times in the past it would. 

      Hope, defined by Merriam-Webster as a desire accompanied by expectation of or belief in fulfillment.  I always thought that this desire is what enables people to begin gathering strength, to start doing everything they can to fulfill a certain goal.

      But I believe there is a stronger more potent term that keeps the gathering of strength going--Faith, defined as strong belief or trust in someone or something.

      While hope patiently waits, faith leaps. And it is in the leaping that strength is gained. It is in the leaping that strength is cemented, made permanent.

       Last night, it may seem that Garret was helpless in all the ways autism limits his understanding of the unpredictability of things. It may seem that I was the only one who did all the 'diffusing". But no. A resolute no.  I believe in my heart that Garret has this quiet reservoir of strength that has only grown over the years and this was what allowed him to rise above the dark place we were in.  And in his strength I gained my own.

      Grace. defined as "unmerited divine assistance given humans for their regeneration or sanctification." Such a technical and impersonal definition. Let me give it another face-- I hoped and I believed. In this hope of only better things to come for my boys, I have found my strength,  but in my faith, I have made my strength permanent and resolute, by doing everything I can for them, even if I fail countless times. And because of this, Grace found me, found us. 
    
        He came to me and I held him and rocked him counting, 1, 2,3, 4, 5... 10. His screams subsided into whimpers and I held him closer still. I looked into his tear-filled eyes and told him with all the force of my beating heart, "I love you, Garret. You are my good boy." He stops crying and says, "Boy..." 
"I do not understand the mystery of grace-- only that it meets us where we are and does not leave us where it found us." - Anne Lamott







Monday, April 6, 2015

How Far We Have Come

It is time for our Sunday afternoon walk around the neighborhood. I take my little prince's hand . He holds the stuffed toy his papa gave to me 13 years ago.

"Doggy is coming with us, kuya?"
He echoes, "Do-dee."

I sing our "walking song". "We are walking, we are walking..." He does not sing with me as he usually does, filling in the last words of each line.  I stop and ask him, "What song would you like to sing, Garret?" He smiles quietly. I think maybe the question is not registering. I do not mind. I suggest, "How about... Do you know the muffin man?"  This is one of his favorite songs. I begin singing. He still does not sing with me. After a few more seconds, I prod him, "What song Garret?"

My little prince smiles and sings, "Hum-tee dum-tee khat o da woh..."

My heart soars. He understands my question. He was processing. I was getting through him.

We sing Humpty Dumpty for the rest of the 1200 meter walk.

Seven years ago, I had numerous questions. I was filled with fear, uncertainty and self-doubt. Would  Garret ever speak?  I wondered what his voice would sound like, how I would feel the first time he would speak, what sort of conversations we would have, would we even have conversations?

Two years ago, he finally spoke. I did not want to believe it the first time he did.  First it was "fish" as he was playing in our Koi pond. Then a few days after, it was the most beautiful word of all-- "Mama". I believed it with all my heart.

Our life with autism has not been easy. It wreaks challenges that seem impossible. And yet each day as we do the best we can, with the slew of therapies and an overwhelming outpouring of love, challenges are overcome.

Our two boys have a long way to go. Our family's journey is one that will be long and difficult.  But we have decided to be grateful for how far we have come. Where every word uttered is a gift, where every breakthrough in whatever form, a cause for celebration. Today was the yesterday we so feared. And today we may not be at our best, but we are wrought with victories, miracles and milestones reached.

By the time we go back to the house, the sun has set. Garret decides to sit at our front steps for a while longer. He looks at the sky, looks for the sun, marvels at the birds taking flight, fingers stimming. Then he sings again this time another song, in perfect tune. His singing takes me back to the first time he had his occupational therapy. He was three years old bawling his eyes out. But then towards the end of the therapy session, he was calm and singing, "Ga-ga-ga," to the tune of the song, "God loves me, God loves me. In the bible yes it says that God loves me."

Now, he sings many different songs. He has at least 15 words in his vocabulary. His favorite words are star, heart, sun, moon, boat, happy, boy. We converse in songs, in gestures, and in a language that is universal. One that is filled only with love.  And his voice? How can I describe to you in words? It is like angels singing.

Several years ago, I was consumed with uncertainty, self-doubt and a myriad of fears. They still exist. Make no mistake about it. More questions remain unanswered. But today, I choose to be consumed with gratitude and amazement at how far we have come. And this may be the answer to all my questions-- gratitude and amazement at how far we have come. 












Thursday, April 2, 2015

My Personal Advocacy

 For children and adults in the autism spectrum, language is significantly impaired together with social and learning skills. For some they develop full language, for others, it is more challenging, to say the least.  April is Autism awareness month. Today, April 2 is World Autism Awareness Day. As I am my two boys' best advocate for autism awareness, I am not only advocating for awareness and acceptance, but more importantly, I am advocating to family and friends for a deeper appreciation of the daily miracles of life, your own lives. Language for instance. The fact that you can communicate to your loved ones and they to you with words is such a beautiful gift. Talk to each other. Have meaningful conversations. And don't take even a single nuance of expression for granted. Language is such a precious gift. Realize this.

Everyday we live with this challenge. Everyday we do our best to understand and communicate with our boys and teach them the language of the world, of life, one that they deserve to know of. You, whoever you are reading this,  are part of their world. By heeding our advocacy, my personal advocacy, to be more grateful for the miracles that is your life, you are making this world a better place for my boys and the rest of the children having autism.

I wrote this poem back in June of 2011 when Garret still had no functional language. A few months after, Morgan was diagnosed to also be in the autism spectrum. In the many things they cannot express, I try as best as I can to fill in the blanks. I do not claim to know exactly what it is in the hearts and minds of my little prince and feisty king. I only know that through them, I am learning everyday to live my life the way the Universe has intended me to.

And so here I am with my propensity and love for words, imploring you, with a lot of words, to take a moment to read this and perhaps share this advocacy which is two-fold: One which is Autism Awareness and Acceptance and two, A more heightened awareness and a deeper sense of appreciation of the daily miracles of your own life.

 June 2011

If I Could Speak

If I could speak, I would tell you how the light shining through giant acacia trees is like heaven kissing my tender cheeks.

If I could speak, I would tell you how birds soaring, landing and once again taking flight stupefy my mind.

If I could speak, I would tell you how the leaves floating in the wind is like me dancing to the trumpets of cherubim

If I could speak, I would tell you how the feel of the grass, the morning dew and its dry roughness in the afternoon sun comfort my restless feet.

If I could speak, I would tell you how the wind blowing on our faces is the Universe breathing, telling the truth of our stories.

If I could speak, I would tell you how water calms my soul, soothes the chaos in my mind and that is why I play with it, sprinkle it, splash in it, taste it, feel it running through my fingers, because it purifies my spirit.

If I could speak, I would tell you the waves talk to me like an old friend, that the sound it makes crashing to the shores is sweet, sweet music to my ears.

If I could speak, I would tell you that God loves me and you so much, that he gives us the sun, the moon, the stars, the wind, the skies and all of the earth. So how can we not marvel at this beautiful miracle called life?

If I could speak, I would tell you how much I love you, Mama and Papa. And I would tell you every single day that you did good.  And all that you have given me, all that you are to me is more than enough.

And if I could speak, I would tell you, in not so many words but in a language that is strong, simple, loud and clear, how much I love you, in the most gentle of kisses, in an embrace so tight as I serenade you with the most beautiful songs borne out of my heart, all the days of our lives...


Wednesday, February 18, 2015

My Greatest Gifts



Our boys made  Christmas and Valentines' cards for us with the help of their teachers and caregivers during Sped Class. While I know that the initiative comes from the teachers themselves, I know in my heart that the message of the words, written with moderate to maximum assistance just to  hold the pen firmly enough to form the lines, curves and edges of each letter, are no less true.

Their words of, " I love you"  are true in the happy glances, Garret gives me when I choose to spend the morning with him writing his ABC's or bringing him to the grocery.

They are real in the gentle hands cupping my cheek, feather-light kisses,  tight hugs and unabashed laughter Morgan gives me out of the blue.

They are true in those moments when I have no time to take out my phone and capture the "moment".

The words, "I love you"  are most real in those times when I only have to bask in their joy, when all I have to do is be truly present with my boys.

It is when I am fully aware of their language in whatever way they speak to me that the words "I love you" becomes real, unabashed and true.

Perhaps one day Garret and Morgan themselves will choose to write me a Christmas card or make a Valentines card for their papa. Perhaps. But it is those nameless, undocumented moments filled with real love that matter most. And they are too numerous to count or even write about.

So my dear boys, Garret and Morgan, 

      I hope one day you get to read this. 

     Know that it is I who must thank you for filling my life with love. Because of you I have learned to define my life and love in the simplest most elemental of ways: in presence, in awareness and gratitude always. 

     I love you with all my heart, my little prince and feisty king. 

     Be it Christmas, birthday or Valentine's day, you are my greatest gifts.
Love always,

Mama Bea

Friday, January 23, 2015

A Moment of Perfection

I sing, "The wheels on the bus go..."
Garret sings, "wownd and wownd
I sing, "Round and round"
He sings, "all through the town"
"The wipers on the bus..."
"Go wees wees wees"
"Swish swish swish"...
"All through the town..."

In another moment, Morgan cups my face in his hands, stares at me eyes twinkling, grinning, laughing. No words are said. Only embraces that become tighter the more he laughs his heart out. Until he catches his breath from our roughhousing.

This is how Garret and I converse. This is how we connect.  We sing.

This is how Morgan and I talk. This is how we connect. We embrace and play.

And when we do, it doesn't matter that we are repeating age old nursery rhymes and playing with no specific purpose in mind than just to sing and play. It may seem repetitive, boring, nonsensical, childish to others. But for me it is the most beautiful thing in the world. Because in those few precious moments, my little prince and feisty king are in my arms, looking at me intently, happy. And in those moments, we are connecting to each other through our own language. In those moments I know in my heart they know the love I have for them. In those precious, merciful moments, our world is perfect.

Isn't this all we really want in this life? Isn't this all we need in life?  To connect with somebody? With our dearest friends? To know we are not alone in our journeys no matter how different our baggage may be? With our life partner? To go through life with each other as anchors when the turbulent seas of life become rough. To be each others sails and be one others wind at the same time so we may become who we are meant to be. With our children? To know their deepest fears and aspirations, to let them know how we love them so much that they wouldn't even know what to do with the love we have for them?

Converse, discuss, dialogue, talk to each other about everything. Have a good conversation. The simple ones. Even the hard ones. Especially the hard ones. Face each other. Be vulnerable enough to show who you truly are. Be brave enough to see people as they really are. Laugh hard. Weep, if you must. Be angry if you should be. Don't turn in. Open your heart, arms outstretch, palms facing the skies. You may not get hurt with closed palms but  you can't catch all the miracles the Universe has intended for you either.

So go ahead, look to the people around you. Converse. Connect. Sing if you want. Hold a friend's hand if that is what is needed right now. I'm hoping you might have a piece of what I experience with my beautiful boys-- A moment of perfection. Every single day.









Saturday, January 3, 2015

The Way I Love You, My Boys

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

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

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

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

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

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

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

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

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