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...