Sunday, August 18, 2013

To Hearty Dinners and Real Conversations

Garret was eating his lunch when Morgan smoothly bumped into him intentionally as shown by the smirk on his face. I scolded him and in turn told Garret, "Kuya sumbaga gud na imung manghud." (Garret, will you please punch your brother?)"

Oops my bad. But not really.

I recently visited my hometown and was meeting up with my cousins at a certain place where the it never sleeps at all. Call centers, resto-bars, food joints, coffee shops, pastry shops abound and in them were families having a Saturday night out for dinner and whatnot. This is common sight, I can imagine, families eating out, having dinner together. I see siblings sit peacefully, silently side by side. Wait, did I just say peacefully? And silently? Well how can they not be peaceful and silent with each other when all of them had thumbs and eyes glued to i Pads, tablets and smartphones? They glance up occasionally and speak up rarely, only when they order food or when the parent asks something that they feel they are compelled to answer. Seeing all this, it was all I could do to control myself from walking over to their table and telling them to pack away their gadgets and could they please fight with each other.

Of course the truth of the matter is I don't want them to fight fight. I wanted them to fight as in talk. To each other. Like human beings. Not act like android or apple robots. To talk about their favorite color or song, sing together One direction or Selena Gomez or whoever or whatever song is on the top 40's on the radio. Wait, do kids these days even listen to radios now? Much less know what a radio is? The answer to that question scares me. Anyhow, I want them to talk about their day in school, girls, boys, complain about subjects or teachers. I want them to talk about their aspirations or what made them happy, sad, excited or whatever for as long as they look each other in the eye and talk and laugh until they annoy each other and until one gets punched or pinched in the arm or arguments ensued. That's what I want. Clearly it wasn't what they wanted.

Language has always been a topic of intense interest for me considering how much my boys struggle to express themselves everyday. So whenever I see normal, regular, neurotypical (enough adjectives?) kids not talking to each other, not having a conversation when in fact they can, is almost of an abomination to my sensibilities. Still, at the risk of sounding too self-righteous, I have asked myself many times if my boys didn't have autism, would I also tolerate my kids acting like darn android robots? Would I be taking for granted their ability to socially adjust and verbally interact? Of course answers are vague and speculations at best. But that is where my fear lies. That maybe, I may just be the kind of parent I wouldn't want to be. So I actually thank heaven my boys have autism because I am given the chance to truly appreciate what it means to speak and have a conversation.

So no, not really "my bad" when I say to my son "Punch your brother", because it means if he does punch his brother, he responds to teasing, he is emotionally responding to his brother. So I wonder, are these normal kids emotionally responding to each other at all anymore? Do they know how to articulate their thoughts, ideas and emotions? I certainly hope these technological gadgets serve to augment their communication skills and their relationship skills rather than impair them. And the possible response to this statement also scares me quite a bit.

One of my favorite memories growing up was when we would go out to dinner Sunday evenings at Sunburst Fried Chicken Restaurant. For the authentic Cebu childhood growing up experience of the best tasting chicken(no offense, Jollibee) Sunburst definitely hits the mark. The thing about those dinners that made it memorable was how we were made to wait 20-30 minutes before it was served. Half an hour. And we had no cellphones or tablets then. What we did have was an overflow of ideas spilling out of our heads as we patiently waited, fiddling with the ketchup, hot sauce and Worcestershire sauce pouring them on the sauce plates, mixing them using toothpicks. My brother and I talked. My aunt and I talked. My mom and papa talked. We talked to each other. We told each other stories of our day, of the coming days, of days gone by, past, present and future happenings. And yes, sometimes I would annoy my brother so much that we would fight. But it was well worth it. Because it was through those fights that we came to know each others strengths and vulnerabilities, our belief systems and what we hold dear to our hearts, because authentic sibling relationships included fights, emotional responses and anything that involved expressing oneself to others even if it meant numerous shouting matches and punches.

Finally, when the conversation lulled, the food came steaming hot, just in time. Hearty dinner followed. Or rather continued. Because the conversation before the actual meal served as the best appetizer ever. And those hearty dinners, I believe were authentic family experiences, as human as they can get.

So, when the day comes when my boys are able to initiate and maintain a conversation with me and their father, all my senses will be attuned to them , with what they have to say, prodding their language out and encouraging them to talk and talk and talk until they get tired.It would probably be the second best day of my life. The first being the day they were born. When that day comes, I'll make sure to bring them to Sunburst Fried Chicken for the authentic Cebuano sumptuous chicken experience with the 30 minutes waiting period. We will have numerous hearty dinners, real conversations, fighting and all.

Friday, August 16, 2013

Our New Adventure

After bringing my boys to regular Playgroup class this morning, I was beset with random thoughts and insights:

It's amazing how 4-year-olds can be so small their school bags are bigger than them and yet their vocabulary bank is so large it holds numerous words, sentences and ideas that they literally cannot contain within themselves they have to shout out with glee to their teacher in class. But what really leaves me in awe is not so much the shouting that leaves my ears literally ringing as it is their joy and enthusiasm that they exuberate in answering questions and in simply conversing with each other.

I hope their parents encourage this joy and energy to flourish. I hope their parents do have lengthy conversations with them regardless of whether their kids talk about how they played bubbles or finger painted or some other seemingly nonsensical things because for them, it isn't. For them, this is their way of knowing the world they live in. For them everyday holds so much value, beauty and wonder. I hope parents do take time to talk to them because language is such an intricate and complex process. This joy and exuberance in speaking may come naturally to these kids but it comes with a LOT of hard work, confusion and tears even with my own boys and for other kids on the spectrum.

Perhaps even as adults, we forget how to be simply happy by the very fact that we can express ourselves so clearly. We forget to appreciate what we do have. This has always been the life lesson my two boys teach me everyday. Gratitude and True Appreciation. These two are inseparable. There can be no real gratitude without the giving of value to what is already there.

This morning I looked at the twenty regular, neurotypical kids and they have taught me a very important life lesson too-- to never forget that joy comes to those who exercise it daily, to those who choose not to forget to always live in awe at the daily miracles life has endowed us with so generously. Miracles are everywhere. And we will only see them when we begin to live in this world with the joy and exuberance of 4-year-olds.

Post script: For a long time that I have been immersed in the environment of special needs, now that my son is slowly exploring the "regular" world in the regular kids' class, I feel as if I am exploring the normal world myself in the place of these neurotypical kids too. It's quite unsettling as it is exciting. An adventure for myself as it is for my little prince.

More posts about this new adventure of ours soon. :)

Thursday, August 8, 2013

Our One Day

"I love you,"
"You yuv mee."
"We're a happy family"
"Wee a gey bee huh"
"And a kiss from me to you"
"Won yoo say"
"You love me..."

Today. I sing the first line of the ever famous Barney song. Garret sings the second line. And so on and so forth. We are lying on the bed on this rainy afternoon, my left hand holding his and we are singing. Together. Wait, let me rewind. Let me repeat that in case you missed one crucial point-- Garret is singing the lines, actually verbalizing the words. We finish the last notes of this song and my heart is twisted in knots marveling at how far my little prince have come.

July 18, 2013. Three weeks ago. My little Prince said the most beautiful word to my ears for the very first time. "Mama". When he said it three times, yes not just once, but one, two, three times, my world literally spun that I didn't know where to put their bug spray and their bag. I was stupefied, amazed, awed. All the synonyms of that emotion that leave your mouth hanging open and heart bursting at the seams would pretty much describe how I felt at that time until now.

I have heard too many testimonies of how when mothers saw their children for the first time in their arms, they cried and felt that one unbreakable bond in an instant. And even more stories of their children's first words at 10 months old or younger. Words as significant as "Mama". When I gave birth to Garret, all the testimonies and stories I heard remained just that-- narratives to me. Of course there is no question, I love him with the whole weight of the universe but somehow I couldn't connect to him the way I expected to. I don't know if Autism caused this "disconnection" that I so deeply felt but wanted badly to deny, maybe it did. And when the months went by until he turned 3 years old, when still no "mama" or "papa" was heard from his lips, questions began to pile up in my head and in my heart waiting to be hurled to the universe of which no answers were heard as well.

From the time Garret was then diagnosed at three years old hence, and a slew of therapies and special education commenced, life began unfolding in ways I could not even predict or sometimes even understand. What was clear in the years that have gone by was the one undeniable truth of how my little prince was teaching me the ropes of life. And not the other way around. Acceptance. Gratitude. Courage. Strength. Resilience, And Love above all. Among the questions that piled up was the one that bore the heaviest load, "Why Autism? Why my sons?" I only have to look at my Garret and my Morgan and see the joy in their faces at the simplest things and see the courage in the full breadth of their souls to face everyday hurdles in living in this normal world of ours and I find the answers I am searching for.

To be honest, my faith has seen countless days of wavering strength. Frustration came in all forms. Anger directed at the universe of the "unfairness" of it all. More questions--"Why couldn't my son still not talk? Will I have the strength to carry on?" How did I get through days like this? I just let go. I asked the hard questions and allowed myself to weep and be angry. And then when everything that was toxic and dark and not good went out of my system, I gathered whatever strength there was left and pooled the support and love of friends and family and used it to support my weight long enough to stand on my own two feet again. "Mama said there'd be days like this. "

And days of bliss...

Just when I was about to give up, the tide turned. Our One Day came. Let me tell you the details of what transpired the day my world spun:

I was blow-drying my hair, getting ready for school a.k.a. work a.k.a. teacher-momma mode. And in the mirror, I saw Garret approach me, wanting me to be done with whatever I was doing because he wanted to go already. I turned off the blow dryer and looked at the mirror, I cupped his face and said, "Look, Mama and Garret." I pointed to our faces in the mirror. He then said, nonchalantly, "Ma-ma". I was dumbfounded so I brought him outside and told his father, "He said, Mama." His father said, "Maybe it was ma-na (finish in our vernacular), as in he wanted you to finish blow drying your hair." I told Garret this time, "Garret say, Mama." To which he said, "ma-ma". I requested that he say it again. And he said "Mama" Twice. And that was when my world transformed into a roller coaster of joy and tears.

8 years. A slew of therapists and therapies. One word. "Mama." Miracles happen. Breakthroughs are possible. The Universe certainly knows what it's doing.

As I am typing this now, Garret approaches me with his pack of biscuit. He says, "A-ma Bea, O-wan." I open his biscuit and hands it to him, I cue him, "Tha--" He continues, "Chan-chyu."

Mama Bea. Open. Thank you. Five words. And more coming.

It has taken me a long time to write about this fateful day. Because I wanted to give it justice by writing it when all my senses are attuned to celebrate and laud my little prince. Because as much as this is about him saying the word that fills my heart with the greatest joy and content, this is about him breaking through one seemingly unbreakable wall of autism. One being this wall of apraxia that afflicts most kids on the spectrum. This is about my little prince Garret's courage and strength. This is about him experiencing the world as never before, being able to communicate, to explicitly express himself. One day, it won't be his mama anymore telling his and his brother's story. One day he will tell you himself. One day, Morgan too will tell his story. And I believe this with all my heart.

And this day wouldn't be possible at all without the love and dedication of his therapists, teachers and doctors and the unfaltering support of family and friends. I thank all of you. You know who you are. I will be forever grateful for your kindness and love you give to my boys and my entire family.

In the meantime, we continue to do what we always do. What my boys have taught me to do, live each day as if it were the first and last day of life, give it my all, do whatever it is that lights my fire, appreciate every single blessing, see everything as miracles and know that no matter what happens, hope is not lost.

And on this note...

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all...

-Emily Dickinson-

Lastly, as if I would forget the one who is looking down on everything perhaps in utter amusement at my lack of faith and human questioning, maybe even saying, " I told you so.", thank you, Universe.