Sunday, May 29, 2011

The Language of Love

Garret turns on the keyboard, turns to look at me and says, " Ah, ah!" He wants me to play one of the 40 recorded music selection that he likes. I take a wild guess and press number 11-- Beethoven's Fleur de lis. He smiles his angelic smile where his eyes are all crinkled and twinkling, grabs a chair and listens to the notes intently. At other times, I cannot guess what music he likes to hear, but most of the times it is as if our minds are one and the same.

Just like any other facets of his autism, we've developed a coping mechanism to understand his language. Our senses are on full alert to his gestures, body language, routines and our memory bank constantly on the go all the time. We have yet to fully integrate pictures to augment his language. In the meantime we are masters of his language. We have our own way of communicating. But of course, when our memory fails us, and simply when we do not understand what he wants, what his "ah-ah" means, when his gestures and body language fail him, the inevitable happens. He gets anxious. He becomes frustrated at us. At himself perhaps? He gets frustrated with the fact that we can't understand what he wants. We get frustrated that we sometimes forget his routine. Then the tantrums come.

Slowly and painfully, we are realizing that while there is still hope that he may be able to speak like his typically developing peers, we have to take further steps to make communication easier for him. Easier for all of us. We have to break down the walls of beliefs that the only language is one that can be conveyed through spoken communication.

Children with autism learn best through pictures. They are visual learners. Because their brain processes input from pictures easier--it simply sticks in the memory. Come to think of it, we, the "normal" ones would say this is pure common sense. After all, we would always prefer visual proofs rather than narratives of our recent travels or our day-to day experiences. Thus, with the advent of technology, we then upload pictures through email and of course, Facebook.

For our kids with autism, however, this need is simply more pronounced. This is their basic need. This is how they learn. This is how they communicate. This is how they are wired. This is how they live. And this is how they must be understood. Therefore we must find ways to make their world as they live in ours easier, more intelligible, more comprehensible. With the use of pictures, they can communicate better, we, parents can communicate better, and perhaps eventually find a way to make our love be known and be understood by them.

In reflection, deep down, beyond all the scientific research and facts, beyond all the questions of why? why autism? why Garret? why us? beyond all understanding, beyond all confusion and despair, I know that there is a great purpose to all of this.

Maybe it is this:

What we have been given, Garret with his autism, is a gift that is mysterious at best. As we expand our way of thinking and use up all our emotional resources to communicate with our child, maybe God is telling us--that when we love-- there is no other way to do it but to give everything of ourselves.

To understand Garret, we must not only listen with our ears, considering how the words he chooses to say or what his brain allows him to say is limited, to say the least. We must learn to listen with our eyes, see him, look at his face, see his gestures, discern his postures, observe his jitters, see how he is restless, see when he is comfortable and at ease.We have learn to look with his eyes.

We must learn to listen with our hands, our sense of touch, when he is trembling with fear or when he is feverish from a bout of flu, or when he begs to be carried, embraced and cuddled because there is no other way for him to tell us of his loneliness or sadness and we have to be sensitive and respond to him. It does not matter if it would take hours to embrace him. We have to drop everything else just to make him feel, he is loved, safe and secure. This is what listening is all about.

To know what makes him happy, we must learn to break down our traditional ways of perceiving, enter his world and play with him. Revel in what he is fascinated with, whether it is lining up cars, playing only with one color of pegs, being excited with the light passing through the giant acacia trees, or birds flying in one line in the sky. Only then, can we give him true joy.

We must learn to understand even through our sense of taste, to try his favorite crispy foods and to actually enjoy it ourselves, and to better understand his picky sense of taste and not enforce our own preferences on him.

To love our child, we must use all of ourselves- we have to communicate with him using all our senses. There is no room for half-finished, multi-tasking feats. We have to be there for him completely. We have to love him with all our mind, heart, body and soul. To love Garret, we must lose ourselves, buckle our knees, raise our arms to the heavens and surrender. To love our child, we must surrender.

And maybe, just maybe when we come into total surrender in our love for him, miracles will happen.

But in the end, it does not matter anymore if he will be able to speak and tell us what number of music selection he likes to listen to on the keyboard. What matters is that we have a language that can communicate our love for him. A language that he understands-- a love of total surrender. This is our language.

Perhaps this is the great purpose of autism, of everything that has transpired--for us to learn that there is no other way to love our beautiful son but to love with total surrender. This is the true language of love.

Friday, May 20, 2011

No Place Like Home

Home. Family. Friends. The love and warmth that reassures us that no matter what happens, we have somewhere and someone to come home to. When everything is topsy-turvy and chaotic, there is that certain peace and solace we can go to. It clears our head, soothes our aching hearts and renews our spirit. It's that constant reminder that sticks with us that wherever we may go, whatever mistakes we may have made, it is alright because we are a family and we have them to welcome us with open arms just like the story of the prodigal son. Family. It's the blood that runs through our veins. Its strength cannot be denied. Its power to heal, encompasses everything. They root us to the ground and allow us to spread our wings, explore the world and when we become tired of flying, they say to us, " It's ok to land...come and rest for a while." And even when we choose to thrive in another world, their nest is still ours, waiting for us to come home. Even in the midst of eccentricities and the worst of choices, it does not matter because home is where the heart is and family is everything.

I grew up learning all this from my parents. Papa spent weekends with us and not because he was out of town the rest of the week. Mom was a very active career woman and a devoted mother to my kuya and me. What I clearly remember is the days we spent together albeit short were full of affection and peace. And I always felt safe and secure. Papa and Mom made sure of that. And as I was growing up,they had this one piece of wisdom that molded my way of thinking: we make mistakes, we are accountable for them, we face the repercussions and in the end we are a family and we are here for you no matter what.

I only hope I can provide the same kind of safety and security to my two boys. This is what I am striving for every single day. As to how I can make them understand in their own language, I do not know how but I will certainly do everything so they will always feel safe and be men secure in their own right.

I do not know yet what the future holds for my two boys. Will Garret be able to make something of himself? make choices by himself in the adult world whether good or bad? Will Morgan be able to choose a career path for himself and eventually follow his true calling? Will they be able to spread their wings? Will I be able to endow them with enough strength and resources so they can be alright out there in the world? Will I be able to assure them that even when the storms of their lives may come, mama is right here waiting for them with open arms?

Everyday is a challenge. Keeping a marriage up and running, running a household, making a living, raising children. And as with all challenges, the perks are numerous and priceless: Garret being able to follow his teacher's fingers in, "Incy wincy spider", or him recognizing a star at the bottom of his sand bucket, declaring to the entire world, "KAR!" and singing "Twinkle, twinkle little star" in the most beautiful voice ever. Morgan making more and more eye contact, putting coins in the coin bank by himself, stacking 10 cubes so delicately they do not topple down. These are just some of the countless wonders. When the trials come, I am reminded once again that their mere presence is stronger than any form of pain and heartache.

So back to the question, " Will I be able to give my two boys the safety, security and love that my own parents have given me? " Right now it seems as if Garret and Morgan are the ones rooting me to the ground and letting me spread my wings, just like what my own parents did. How blessed am I? They are indeed special children. They remind me everyday in their own non verbal way how I am doing things right. They tell me everyday that no matter what happens, whatever challenges I have surpassed or have yet to overcome, I have them to come home to. They only know the basic things and perhaps all there is to know-- love, laughter, joy in its purest sense. Their love is stronger than anything. And it is enough for me to hang on, to go on. And the most important assurance they give me? It is that there is certainly no place like home.

Saturday, May 7, 2011


Motherhood-to nurture, to carry another human being in one's womb. To care for this human being-- nourishing, protecting, loving it until the 38th-40th week.  To endure labor pains and operation scars. Finally to see and be awed at the beauty made life in that one single, magnificent cry.  But this is merely the beginning. The true meaning of motherhood goes far beyond childbearing and childbirth.  Labor pains and operation scars translate to heartache as our children endure pains of their own--down from the simplest discomfort to the worst of physical and emotional maladies. And we say to them, "if only I can bear your pain so you won't have to feel any, I will."

     Garret's permanent tooth showed up just last week. And his milk tooth is showing no signs of falling out either. What with his eating habits of no sugar and no candies, thank you very much, his milk tooth is as hard and calcified as a permanent tooth. As you can imagine, this can only mean one thing--tooth extraction. Teeth, to be exact, the dentist informed us yesterday she is going to have to extract two milk teeth. As I am writing this, a knot is forming in my insides. Garret will have to be wrapped in a blanket like a burrito to prevent him from moving as the dentist injects the anesthesia. The imagery of it is driving me nuts. I ask myself and God, " Is there any other easier way for my child?" Of course, there are no easy answers. Ah, the pains of motherhood. If I could, I would take his place, be wrapped in a burrito and be injected with the anesthesia a hundred times over just so he would feel no pain.

       Our instinct to protect our children from any harm is primal, necessary, elemental-- for our own peace of mind, that they may be able to live free of danger,  worry, hurts and that they may live a long, long life. But just as life is, as much as our choices determine our fate, in the end, a higher power determines our destiny. And yes, when it comes to protecting our children, we have no absolute control whatsoever.  As this sentiment may be common among all mothers, I think this is all the more intensified and pronounced among autism mothers. The environment that may be ordinary for normal kids may be too much for our kids, and they go into a sensory overdrive. And so we control their activities, choosing only places or activities that their systems can tolerate and to some level activities that they can actually enjoy. We try to shield them from prying, prejudiced and ignorant stares of people in the community so most of the time, their playground is only at home and in school. We cannot, for one minute, let them out of our sight for fear that they may injure themselves, or that they may run across the street and be hit by a car, or be taken by strangers.  We do everything to protect them. Autism mothers are on alert,  hyper-drive, every single time.

          And so, when a simple natural bodily phenomena occurs, like a tooth falling off or coming out, which humans have absolutely no control over, this autism mom cries out, “help!”, frantic ,not like a crazed woman, but more like a duck calm on the surface but paddling furiously hard underneath. When these things happen, when nature calls the shots, of course, humans are helpless. And I have another lesson again to learn-- I have to learn to let go. The workings of the universe are inevitable, unstoppable. No use fighting it. Besides, a procedure as excruciating as a tooth extraction has its own hidden blessings. As to what? I certainly do not know yet. Maybe I will know in a few days, in 3 days to be exact. Maybe, I will realize that Garret is the bravest boy yet? Braver than his frantic mother. And that I should have had nothing to worry about.

           On a larger context, letting go is such a strong and difficult thing to do, for all mothers- autism or not. Whether it is about our children choosing the career path they wish to take-- to be a nurse, to go abroad, to be an artist, to be anybody they want to be, or whether it is choosing a partner to spend life with for the rest of their lives-- rich, well-off, self-made, Filipino, Chinese, Caucasian, the greatest fear for all mothers is that their children will be hurt, they will be damaged and they won't recover. And this fear is the very reason why mothers become overly protective of their children to the point of stifling their spirit.  I don’t claim to be an expert on parenting, much less on motherhood per se, but this I do know—as we claim to love our children the best that we can, we have to trust in the workings of the universe that all our efforts to rear our children will not go unnoticed, and therefore we have to trust our children that they will make the right choices and they will be alright, no matter what. They may endure hardships, but that is the only way we can truly live.  But then again, what do I know? I don’t know if Garret will ever get to go to college, or marry. So maybe I don’t have the right to say these things—trusting, letting go.  One fact remains though, my own mother loved me (still does, of course) the best way she knows how—rooting me to the ground with values and allowing me to spread my wings—make my own choices and yes…fly—letting me live and be accountable for my own choices. Perhaps this is why God has given me Garret and Morgan. Not because I am strong, but because my own mom did not let her fear overpower her, but she let go when the time was right and she let God do the rest. The kind of love she has given me made me the strong woman to raise two special boys.

            Come Tuesday, I will tell myself, “ Garret is going to be alright. Everything’s going to be just fine. It’s not  like he's deciding to become a doctor or whether he will marry royalty or not…not just yet anyway (wink, wink, wishful thinking). It is just a tooth extraction after all.” Nature is doing its work. So I should be learning my lesson too—to just let go, just as the universe wants me to.