Friday, January 27, 2012

The Most Beautiful Music

It was lunchtime for my two boys. "Garret, come.", I called to him. He is happily engrossed playing with his bottle of body oil and he does not come to me. I call out to him again this time changing the intonation and pronunciation, "Gar-reet, come". He looks my way and comes to me. I am amused and told him, "Do you like the sound of "Gar-reet" better, kuya?" I get no response of course as he returns to his bottle of oil happily stimming.

"Does he come when called? Does he respond when you call out his name?" These are two of the the first questions a developmental pediatrician or therapist asks when parents have their child evaluated. At this point, the parent senses that sinking feeling at the pit of her stomach and realizes for the first time that come to think of it, her child does not come when called and when is called by his name, does not respond. Automatically she answers, " Well, when he is so focused on his toys or cartoons..." The parent does not bother to finish her sentence because she knows better. Deep down in her gut, she knows that something is wrong, was wrong the first few times she calls out the name of her child and he does not respond. And it is not because he can't hear. The doctors' questions only prove her gut instinct right. There is no going back now. And it is finally time to face the truth.

I know this all too well. From personal experience and from the parents I encounter at the center. I wish I could fully comfort the mothers who come knowing I've been through what they are going through. I wish I could assure them that when the questions come it is where the hardest part is but just like everything else in life, once the hardest part is over-- facing the problem, confronting the truth, then freedom begins, and the load will be not easier but at least less heavier to carry.I hope it gets through them. I hope they are consoled and comforted somewhat. I tell them, the progress of your children won't come overnight. It happens one day at a time. Just as acceptance does. Everything is a process. It requires so much courage to face the truth. And it requires even more audacity to embrace it.

Name calling. Remember how ecstatic you were when your baby first recognized his or her name? You realize, " My child knows his own name. He knows he is Juan, or Pedro. What a beautiful thing!"

By now, you must know that for us autism parents, it's a whole different story. Our kids need to be guided, physically guided and taught to recognize their names. The Sped teachers and therapists at the beginning of the class or therapy sing, "Where is Garret? Where is Morgan?, there you are, there you are...", complete with the hand gesture tapping my child's chest...Eventually the teachers no longer sing but call out simply, where is Garret? Where is Morgan?. And eventually, they tap their chests by themselves signifying that they are present.

I don't remember exactly when Garret started to consistently respond when his name was called, but I remember vividly the first time he clearly acknowledged when I called him. I think it was in the middle of his first year of therapy. I arrived from work and he was sitting on the sofa of our family room watching his favorite cartoons. I entered the house through the kitchen and when I saw a glimpse of him in the family room, I called out, "Hi Garret!". He turned to look at me and didn't break his gaze for several seconds. It was heavenly. At that point, it was my turn to be ecstatic. " Garret finally knows his name! "

The reason why name calling is one of the many first things that is given focus in therapy or in sped class is because when a child is able to turn when called, it means he is ready for the next step, which is focusing on a given task. Of course tasks start simple, simple instructions--"Garret close the door, Garret, pick up the ball." which will then move on to much more complex tasks which the environment, the world inevitably offers and constantly bombards everyday.

No one will ever really know what goes on in the world of autism. The sensory overload that most likely causes them not to respond to their name being called is one of them. Why their brains are wired differently is a mystery. The world outside their safe cocoons is just too much for them to handle. But the hard truth is that the world does not adapt to their eccentricities and needs, it is the other way around. This is where the challenge rises. This is why we have to teach our children the very basic, practical things in life in order for them to survive, starting with responding appropriately when their name is called. To respond to one's own name is elemental to survival. This much we have learned not to take for granted.

Ever since Garret was diagnosed and we went through the whole process of confronting the reality and finally acting on an intervention for him, every single day has been a day of celebration for us. The little achievements our little Prince makes are everything to us. The day he turned to me when I called his name was the beginning of a greater appreciation of the simpler more basic things in life.

It has been said that the most beautiful music to one's ears is the sound of his name.

Garret's name comes from Germanic origins which mean "strength of a spear" or "strong and brave". I don't know if he will ever understand the meaning of his name but clearly, he exudes strength and courage. My little prince is strong and brave every single day as he strives to live in a world that has the least understanding for his own world, as he strives to learn in his own way, as he seeks for his joy in the smallest things despite the chaos his brain creates. Garret may not be able to say to me, "Mama I feel so good when you call my name." But when I call out his name, it is definitely the most beautiful music to my ears. Because I am reminded how strong and brave he is. More importantly, it encourages me how strong and brave I need to be as his mother every single day. What music could be more beautiful than the sound of my child's name resounding strength and courage? And what experience could be more beautiful than my little Prince responding to his beautiful, beautiful name?

My little Prince Garret, how strong and brave and beautiful you are! Today and everyday, I celebrate your strength, courage and beauty. Once again, thank you Autism for bringing out Garret's strength,courage and beauty. Thank you for teaching me how to see it with the clearest heart. And thank you for bringing out the best of me as a mother.

For all the other mothers and fathers out there just starting the process of facing all of Autism, just hang in there. Don't give up. Hang on to hope. Believe. Miracles happen. Miracles are right before your eyes, your children are your miracles. Soon, they will hear the most beautiful music to their ears. And soon you will hear the beautiful music that Autism teaches too.

Saturday, January 21, 2012

The Voice of Autism

A few days ago, my classmate from high school posted a link on my wall or time line rather. Facebook is undergoing so many changes lately, I find myself having a hard time keeping up with the new changes. I'm beginning to be like my kids who detest change and have a hard time welcoming change. But this is an understatement. As much as I understand what children with Autism go through, I know I could never fully grasp what they must be feeling and what they have to do in order to cope with a constantly changing environment.

So anyway, back to the link my classmate posted. It was about Carly Fleischmann, a now 17-year old girl with Autism and how after how many years of no speech at all, she made a breakthrough and learned to communicate by using the computer. And what eloquent words she writes! When people ask her a question, she is able to accurately answer them and clearly articulates her thoughts in writing in a way that you would not have thought possible of a person with autism. She expresses how she felt she was a normal person trapped in this body which she has no control of. She knew what was right and wrong but her brain couldn't seem to cooperate. So in one of her writings to her dad, she writes, " You've never been in my body. I wish for one day you could be in my body."

What Carly wanted to tell her dad struck a nerve. It strikes a nerve, I think for all parents of children with autism. As much as we go through the journeys and challenges of our children everyday, ultimately, just like us when we have to face our problems alone, they too face their monsters alone-- the sensory overload, all that chaos in their surroundings that they have to take in, all that the normal world has to offer that we normal human beings live in everyday, but for them is simply just one strange, confusing place. As much as we understand our kids, we have no exact idea what they are going through. So how do we deal with this truth? All I can say is that we just do what we can to the best of what we can. We do things head on with the belief and faith that what we do comes from a place of resonating, redundant love. And we stick to the belief that everything that is done out of love can never be wrong. This is how we deal with it.

Just for one day what would we not give to be in our children's shoes? So we can ease their pain. I remember when I got sick, my mom would tell me, "ihatag ni mommy imung yayay be." (Give to mommy your fever.) And back then I couldn't understand what she meant. Now having two children of my own, how I understand what she meant. If only we can carry our kids' ailments and pain when they are sick so they won't have to go through all the aching muscles and tired senses...If only we can have our children's autism even for one day. So we can better understand them, better know them, better love them. What would an autism mom or dad ever not give to ease their child's struggle?

For the bigger picture, I think this question resonates to all parents out there. What in the world would you not give to provide your children a better life, more joy, more love? Nothing. I am most certain you would give everything for the sake of your children.

Going beyond what I have realized, much more than the truth of how we parents will do anything and everything for our children, I think what Carly is actually saying expressing how her dad was never in her body and how she wishes for one day, he would be in her place, is that ability to put oneself in another person's shoes. Be her for one moment. Empathy. Theory of Mind, if you will. And again, this does not ring true only to parents and children going through Autism. This applies to each and human being, come to think of it. We are able to live with each other in harmony because we bear in mind the golden rule. We are able to put ourselves in another person's shoes. We can stretch our understanding of other people and not judge them by the mistakes they have made, by their past, by what they seem to be. We are able to will our brains to cooperate with what we decide. We are able to put ourselves in another person's shoes. We all have the innate ability to do this because our brains can cooperate. In other words, we have a choice. We have willpower. The question now is how often do we use that willpower? How often are we conscious of that gift of choice? No matter how much we are hurt, again, a very basic human emotion and decision allows us to look beyond the walls, to look beyond the pain, to look beyond the sin and error. To take the road less traveled and choose to be in another person's shoes for one day. Just as our ability to sacrifice, to unconditionally accept our children comes from a deep deep place of love, maybe how we act towards our fellow human being is also propelled by this very same emotion, this very same virtue to a different degree or form, but still love, nonetheless. And I think the greatest test of a person's empathy, whether he is able to walk in his neighbor's moccasins is his capacity to forgive. To forgive a friend or family turned foe for whatever circumstances. To be able to transform them back from being adversaries to comrades perhaps is the greatest example of empathy. If you are able to put yourself in their shoes and imagine and will yourself to be in their place for just a moment no matter how hurt you have been, then maybe, healing can begin. Then maybe you can be on your way to a higher form of acceptance, inner peace and harmony within yourself and with the rest of humanity. Then maybe, the question that you have asked yourself, "How do you even begin to forgive?" will be answered.

Maybe, this is one of the resolute lessons Autism is trying to teach us among many once again? Empathy which can only compel forgiveness.

I am slowly beginning to understand this mystery of Autism. It may not be a mystery at all. I don't know but I seem to realize how the irony of Autism, its giving our kids an inability to be in another person's shoes with their challenged social skills and all, is teaching the rest of humanity how we must act towards each other, to will ourselves to walk in our neighbor's moccasins, to be in their place for just one day. Because we are able to feel. We are able to cognitively will ourselves to empathize. Because we are given the gift of choice. So again, in the end, after every self-reflection and self-questioning, in the end, I am still grateful. I am simply grateful. There is indeed a reason and purpose for everything. Including and most especially Autism.

"I think the only thing I can say is to never give up. Your inner voice will find its way out. Mine did." , Carly wrote.

Thank you Carly for your courage, your resilience, your strength. Thank you Carly's parents for never ever giving up. You teach us to be resolute in our resolve as well.

Thank you Autism. Because of you I have found my inner voice. Soon my kids will too.

Thank you, Universe.

Saturday, January 14, 2012

This Time A Lesson from Our Feisty King

For a while now Morgan's caregiver has been telling me that he knows how to give a kiss or at least lets himself be kissed already. For those who have not seen our Morgan, let me tell you that he is the exact opposite of Garret. Where Garret is smiling and charming, Morgan has this perpetual skeptical frown on his face and gives you a look that makes you feel as if you've done something wrong. He is just like a little professor slash supervisor. So for many times before, whenever I try to kiss him on the lips, he adamantly refuses, turning away with his cheeks bulging like little cute chubby apples. With my feisty king's personality a kiss on the lips is something to be suspicious about for him, I can imagine.

So we've never really seen him in action as the yayas claimed. Until last night. I nonchalantly asked him for a kiss. "Morgan, kiss Mama." I knelt on the floor to level with his height and puckered my lips. And what do you know? My Chinese peking duck, my "oplok bugoy", my feisty king puckered his lips and kissed me. I hurriedly brought him outside where his papa was and he kissed his papa too! And when he did it his eyes once again went chinesey and he gave us the tightest hug ever afterward. Is there anything more precious, more beautiful than a kiss and the tightest embrace by our feisty king?

A few days ago, we were having a parents' meeting at the Sped Center for the upcoming Angels Walk for Autism. The other moms were in jest talking about our participation when a regular Grade 2 student came in and interrupted us asking for an ice pack because somebody was hurt playing. We always have a storage of ice packs and ice at the sped center. With the bad days our kids sometimes have, tantrums and all, ice packs always come in handy. After having given him the ice pack, he ran towards the clinic. When the student was out of earshot, a mom commented, " I wish our kids could do that." Meaning, ask for help clearly. Especially when somebody is hurt. Or when they themselves are hurt. And we all fell silent knowing all too well the truth in her words. They were speaking out loud our anxieties clear as day. I don't exactly remember what I said in return, but I think it went something like, " True...but our kids have their own strengths as well. We all have our share of blessings and burdens. Because I'm sure these normal kids have problems of their own too." Another mom chimed in, " I agree, and right now, I never realized how grateful I can be for the little things my son can do already. And it's more than enough. "

I have no intention of explaining the scientific explanation of why our kids have difficulty in sensing danger and expressing verbal, clear language. We've all read the literature. Again, something to do with brain development and the number of neurotransmitters on the different areas and such. With all the research, we've all realized that the causes don't really matter in the end. All parents of children with Autism know is that very real fear that when we just allow our attention to wander to something else for even just a second, our kids would run across the street. Or when they are hurt or feel sick, they cannot tell us in clear language where it hurts. They cannot verbally tell us, they need ice to soothe their bruises. As a result, as I have emphatically stated many times before, all parents, moms, dads and the caregivers' senses are on high alert to understand what is going on with our kids. Keeping our sights on them, never allowing ourselves to lax our attention and becoming very perceptive and discerning to their needs. Understanding their language like no other human being can. And again as a result, we have a language of our own as well. We have our own world as well that perhaps separates us from the rest of the "normal" parents out there.

However, with the truth that I just articulated, all Autism Parent's truth-- there is one universal truth that binds us keeping us strong and resolute, reminding us bluntly how still very blessed and loved we are by the heavens-- our kids have breakthroughs. Emotional breakthroughs, cognitive breakthroughs, behavioral breakthroughs, speech breakthroughs. And we live for these moments. These magic moments that make all our fears go away, that tell us with such an overwhelming comfort that everything will be alright. Who really knows why Autism is as it is? Personally, I've come to the point that I've had enough of the questioning. Because no answers will ever be enough. What matters is what we can do for our kids-- the interventions, the therapies, the sped classes, the evaluations, but most importantly, the relentless love and acceptance that we give to them every day, without fail. Relentless, without fail- redundant these words may be , but this is what our children need. REDUNDANT LOVE. Even children who are normal. Without question.

So this morning, as Morgan was about to have his occupational therapy, the therapist shared to me how happy she was that her other patient was able to speak, imitating her saying, "Teacher, I want..." The little girl had a breakthrough!!! I haven't spoken with the mother but I am sure how happy she was. And the OT was elated to say the least. And how happy I am for the mother and the little girl! Another reminder how they are blessed, and how they are going to be alright.

And last night? When Morgan gave us the most beautiful act of love? His first kiss for his papa and me was a breakthrough! Whoever said flat affect, whoever said challenged social skills, little or no language must be out of their wits! Morgan just expressed the most beautiful emotion, the most amazing expression and language of love. How happy I was last night! How happy we were! How happy I am right now. I was reminded by the universe how we truly are blessed and how we are going to be alright.

As with our little Prince Garret teaching me life lessons everyday, it was Morgan's turn last night. He was telling me, telling us, " Stop worrying mom. Stop questioning, just continue loving me and doing what you are already doing, relentlessly loving me...I showed you last night, didn't I? And I will come through...My Kuya and I will come through. We all will come through."

To all the Autism warriors,ninjas, angels, moms, dads, caregivers, teachers, therapists out there, all you need to know and all you need to do is to never give ever give up on your kids because I promise you, breakthroughs come. In small or large packages. And when they do, it will be the most beautiful thing in the entire universe. And you will know that you are blessed and you will be alright...And this will be enough.

Thursday, January 5, 2012

Destination: Journey

As the year drew to a close, we were on one of our routine afternoon joy rides with our boys. Not really having anywhere specific in mind to go to, just driving around so Garret and Morgan could break out of their boredom at home. For all autism moms and dads out there, we all know and live the reality how school breaks and holidays are the last thing we need, the last thing our kids need. Any break from their schedules and routines could literally spell disaster. And we were no different. Never mind that the yayas were also on their "break" mode, but how the flu broke down our immune systems topped it all off. First the boys, then me and Andro. So all in all we had quite an unusual Christmas break. Somehow we were forced to really rest. Literally. And focus on what is important-- our health, our boys, each other.

With any predicament, there are lessons to be learned and insights to be uncovered, no matter how mundane, unusual, ordinary or otherwise. I remember years back during my childhood where we used to go to Carcar on the weekends, my mom's hometown. We'd drive the whole 1 hour drive from Mandaue to the south with my aunts and cousins. On the way there, if we were lucky, we would spend the whole time bickering, singing or just yapping our hearts out. If we're not too lucky and mom and the other aunts decide, we'll be finishing off the 3 mysteries of the Rosary. So, no fun time for us cousins. After an hour, we'd finally arrive at our destination, and a full Saturday would occur starting with visits to the cemetery at our grandparent's grave, eating calderetang kanding, chicharon and other local delicacies, and playing hide and seek at our lola's 2nd floor room with the rickety stairs.

We'd go back home to Mandaue, exhausted, tired and happy. At that time, I thought it was the place we went to that mattered. But over the years I knew, more than anything, it was the company of family and the memories we created and the singing and the praying the rosary all throughout those drives to Carcar, the beach or to wherever. As cliche as it may sound, it's true what we all say, it's the journey that matters.

As Andro is driving, our boys are silently taking all the scenery in. The two of them sitting side by side on the left passenger's seat, peering out the window. The rice fields, cornfields, sugar cane plantation, the rain pattering on the window, or the magnificent sunset over Barangay San Pablo. Morgan clutching his favorite Monay, and Garret munching on his favorite biscuit. Our route is simple, drive to Albuera and make a turn at their market where the sea on our left side is glistening mightily under the setting sun...Beautiful. And then we go back home. Or, we drive all the way to Merida and then back. Or we go through the Ormoc Airport road and by chance we sometimes catch a student pilot flying a small plane. And then we go back home. The boys are content. They are simply happy. No more restlessness or tantrumming when we arrive home.

We have no specific destination when we go on our joy rides. But we do have one clear purpose-- so Garret and Morgan can have a break, a respite, a momentary relief from the mundane world. And with this break, they enter into their happy place. And that is enough for us. Day by day. Unknowingly, I am also able to take a break from everyday worries or concerns about what the future holds for us. I am able to shut off any noise from my mind and heart and just simply be. Andro and I don't necessarily talk all the way through, just when something comes to mind. Otherwise, we have our own silent peaceful space. And I think this is enough for both of us too.

Again, the unconventionality of our lives with Autism and all its quirks and sensibilities have taught me a very simple truth-- I am given this life to fully embrace, relish and value every drop of dew of living. It's not about the places Andro and I will go or travel to. It's about how we nurture each other, love with all that we've got, empty our cups so we may fill each other again. It's about appreciating each other. It's about remembering what is important beyond the best of us and beyond the worst. It's about making new memories every single day. It's not about whether our boys can be scientists or artists or musicians or physicians. It's about loving them for who and what they are, for appreciating the joy they have brought they have brought to our mundane lives. It's about realizing the wonder how blessed we are to have each other, all four of us together, safe and sound in each others' arms. It is simply about living our lives day by single day appreciating every breath of life we take in. And yes, it's about those moments of respite, breaks from reality that take us to our happy place when our heads are too pressed tightly, when our hearts are too exhausted to beat any further. It's about the silence during our joy rides, the quiet joy of our two boys, the peaceful space. It's all about learning to breathe and learning to appreciate life in every breath.

This is our journey. It may not be like all those other families where summer breaks and holiday trips are a common occurrence, where when they go for rides, the destination spell out their purpose. Ours is different. Our destination is our journey. Garret's journey, Morgan's journey. My partner's journey. My journey. And a million times over, I wouldn't have it any other way.