Wednesday, November 16, 2011

So Now I Know

I knew this was coming. But how it still hit hard.

For a long time coming now, I already had an idea that Morgan belonged to the spectrum. But considering how more aware he is of his surroundings than Garret was before at his age, a small part of me hoped and prayed and wanted him not to be. Having had already a child with Autism does not shield you from the possible denial and other mix of emotions that you still experience when the other sibling is diagnosed. It certainly did not shield me now.

As much as I have come to terms with Garret's Autism, Morgan also having it, I realized, still takes a considerable amount of processing, accepting and a coming to terms with what is. I guess it all boils down to one universal truth-- when you become a mother, a father, a parent, regardless of whatever circumstances you are given with, you are tested beyond your limits, your capacity to take things in stride, to believe that there is a purpose to everything , your capacity to love without measure.

Right now, I have to acknowledge that the reality is heavy. It is harsh. I don't want to be a hypocrite and pretend that it is okay for me. For our family. Because it is not. I do not want to flower-coat the reality of Autism. I have to be honest to myself, admit to myself that it is not okay. Because only when I am honest will I be able to allow grace to flow, the grace that will allow me to eventually say, " Even if it is not okay, I accept it with all my heart."

The future is overwhelming. And questions bombard me. Will we have the resources to support our boy's needs? Will I have the strength to carry on even when I am at my weakest until the very end? And more dreams will have to be let go.

There surely is a grand plan to all this, unfolding and revealing itself day by single day. I am sure of it. I believe in it. I have to.

I was talking to my mom the other night and during our conversation, I found myself verbalizing and revealing my own reflection and insight from all that has happened for the past months. I told her,

"Mom, I think God is already telling me, 'You've done all you can. Now it is time to sit down and let me do my part this time. You cannot control the choices people make, you cannot control what happens around you, you cannot control everything. Sure, you've fought tooth and nail for everything you ever wanted in your life. After all, I've made you to be the bull-headed person you are. But even fighters need to rest. It is time to let go. It is time to trust me. Just step back and watch me do my work."

As I am writing this, Morgan is inside the SI room with Teacher Charisse, his Occupational Therapist. He is vocalizing and apparently enjoying and cooperating with the tasks given to him. His recognizable laugh echoes through the clinic. I hear Teacher Charisse saying, "Wow! Good job, Morgan!" I smile and thank the heavens.

In two weeks, Morgan will undergo an EEG procedure his neuro-developmental pediatrician recommended to rule out any possibility of seizures. In the meantime, we continue his therapy and soon will be enrolled in Sped Class. At home, I follow through, strictly, this time, the activities of OT every afternoon. There is no time to waste and no time for denial. Minimize T.V. watching, label everything, read picture books--these are just a few of the recommendations of his doctor. For the past three days, we've conscientiously followed the doctor's orders. Although we know all this, the finality of a diagnosis really made an impact. I've been searching for signs everywhere, for answers to riddles posed to my life right now. And what better answer was I given than this? Not an easy answer, but a very worthwhile one.

So now, once more, the cards are laid down on the table. How do I deal them? Well, this time I choose to listen to my inner voice, to the voice of the heavens, the Universe if you will--With faith, hope and love.

I will trust in the grand plan. I will hold on to faith. I will not lose hope. And for my boys--I will love them even more with all my heart, mind and soul. Because my little Prince and feisty King deserve nothing less.

Friends and family have been cheering me on, giving me strength. And I thank all of you for the love and support. You tell me to be strong, that I am strong, that I am a fighter. Right now, I feel anything but strong. But I am hanging on. What's that saying? Sometimes things happen that will bring you to your knees, to remind you you are human. To humble you down and to remind you there is somebody greater than you. To remind you that you cannot do it alone. To tell you that it's okay to ask for help. Well, I am on my knees now. I am learning. I am reminded. I am humbled. And I need help. And I don't need to act strong all the time. And I know now that it is okay to let go. Now I truly, truly understand.

So now I know.

I will follow through and carry on and never give up. And maybe in the coming years, I will once again hear the voice of the heavens, this time, telling "Good job, my child."

Thursday, November 10, 2011

A Purpose, Deeper, Greater, Higher

The thing about life is that the choices we make and what destiny has in store for us overlap and intertwine. We are given free will and yet we are steered into an entirely different direction from the one we mapped out for ourselves. Eventually. And it just takes an Aha! moment, a eureka experience to take us out of the dark, to pull us out of the pit we allowed ourselves to wallow in. A moment of insight that dawns on us that makes us say, "Now I understand, I truly understand." And we begin to find ways to "unstuck" ourselves. Because life goes on. The world simply does not stop turning. Even for our grief and regrets. We realize that despite all the darkness in our lives, there are those that rely on our light, our ability to shine so they in turn can disperse their own darkness and shine their own light with only the infinite brightness that they deserve.

What am I talking about? As cryptic as this may seem, I know some of you may relate to these words whether you are undergoing a crisis in your profession, turbulence in a relationship, hurdles in marriage, challenges in raising children, special or not, whether you are facing a fork in the road in your calling, in your passion. In my case, I think it is a mix of everything in the bowl. This bowl called life.

10 years ago I remember being so determined and so sure of what I wanted. I loved my job as a Guidance Counselor and part-time college teacher, training students and teaching was an exciting endeavor for me every single day. It did not matter that my last class ended at 9 in the evening. I felt I was at the top of my game. Two years after, I came to a fork in the road. And I chose the road less traveled. Forgive the cliche, but there is no better term than this. And when I stepped on this path, again, I was never so certain in my entire 22 years of life at that time. No holds barred. I was beaming with joy. I made my choice head on and heart bursting in my chest.

Now, as they say, the rest is history. And what a 10-year history it has been. In retrospect, I did plan to get married and have kids. Well, I got married. And to no less than the man I was in love with the moment I met him. Although I did not know it at that time. But when I did, I knew there was no turning back and there would be no other man for me. Romantic musings? It may seem to be. Cheesy in fact but when it's the truth, one does not care how she is perceived to be anymore. So yes, I got married, am married to the man I chose with my heart, mind and soul to marry. And just like any marriage or relationship, the challenges are great. After all, great love requires great responsibility to nurture it. Every single day without fail. When one is weak, the other should be strong. Vice versa. But of course, two human beings do get tired, physically and emotionally. So the storms come or hurricanes, if you will. But what matters the most is what happens after. What lessons are learned? What insights about each other are gained? What is to be remembered? What is to be forgiven and forgotten? And what must two lives do to decide to carry on and move on?

We have two wonderful, beautiful, amazing boys. Garret is now 6 years old. Morgan is 3.We are blessed with them. They are our greatest gifts. We certainly did not plan on Garret having Autism or Morgan having any developmental delays. Who does? But apparently, we were given another plan. What's that saying again? While you were so busy with life, life had other plans in store for you. So this is where choices and destiny dynamically interact. Ultimately, the master planner up there still holds the cards and chooses which cards to deal us with . And when we are dealt with the circumstances of our life, it is how we live it, deal with it that determines how much joy or pain we bring into our destiny. By no means is the raising of our two boys smooth sailing. As a mother, I am tested to my limits, the limits of my patience, understanding and acceptance. I am tested how willing I am to let go of my own standards of being and knowing and dreaming for my sons' world, his way of knowing, his way of dreaming his dreams, his way of living. Every single day, I realize that in order to truly, fully love my boys without measure is to let go, surrender and let them be, let them be whoever the Universe wants them to be. And I have to trust everyday that they will be taken cared of even when I am gone. They will be alright even when I pass on. As for their father, my life partner, he has his own struggles to face as well. And I can only begin to imagine a Father's dreams for his sons and what he has to let go of as well. And it hurts me more than I can bear. More than my own pain.

So to wrap it all up, two human beings deciding to love each other for better or for worse, till death do us part, blessed with two amazing creations of Garret and Morgan, making a life together, making it all work is one great journey. It doesn't always work like clockwork. We have our darkest hours and the most blissful of days. We have days when it seems like there is no sign of dawn breaking and only night prevails. Then there are rays of sunshine that disperses all hurt and anger and pain and assures us that everything is going to be just fine. Because all this rain and thunderstorm has a deeper, higher, greater purpose.

Our present reality should I describe it in one word is Unlike Any Other. Three words describe it better. I'm still looking for a one word perfect fit for our life. We still have a long way to go to, the boys, my life partner and I. We're not even a quarter of the mileage of the journey the heavens has planned for us. But at this very moment, a clarity like never before strikes me-- I need to stop trying to control the events, people and circumstances of my life because I cannot. I must step back. The Universe has spoken. I have been given the cards and they are all laid out on the table. I need to let go. Trust in this bigger plan. Have faith. I can only control my choices. I can only choose to control how I deal and live my life. I can no longer be stuck. Not only for myself. But for my boys. Because my boys need me to be at my best every single day. They need my light so they can shine their brightest, the most infinite brightest glaring light that they only deserve. So I need to use my darkness, overturn it, transform it and make it my greatest strength. Because that is what my boys deserve. This is what I deserve. We deserve nothing less. And more than anything right at this very moment, I believe that I am living out a purpose, deeper, greater and higher than myself. So maybe this is what destiny really means-- free will and faith combined.

As I write these words, I am slowly unraveling the one word which describes my life, my life with my partner, my two boys, our life-- adventure. And the purpose behind all this? Let's just say i recall Andro sending me a card from New York, 9 years ago. And in it he quoted Nikki Giovanni, "We love because it is the only true adventure." So maybe as with all other choices in life, we define our purpose as well. I choose to define my purpose with this-- to love without measure, as this is the only way to live life as if everyday were an adventure. Oh it is not an easy purpose, mind you. This is why it is called an adventure. And this is why this is so much greater, deeper and so much higher of a purpose than myself.

Thursday, November 3, 2011

My Little Prince's Serenade

For the past month or so, Garret has been experimenting on his Baby Piano App on his iPad, recording the first few notes of Twinkle, Twinkle Little Star until he finally got it right. And this week, he has learned to play it on his xylophone. This morning as I was playing their nursery rhymes, he was riding on his trike one hand on the handle bar, the other holding the harmonica, blowing some notes not unlike the first few notes of Twinkle, Twinkle Little Star. As I listen with thoughts scurrying through my head, his music drowns out every noise in my world, every pain in my life, every confusion and chaos in my mind. And now he is singing "London Bridge is Falling Down" over and over again in perfect tune although he has changed the lyrics to suit his preference. But it does not matter, his voice is crisp and clear and it seems to carry him through the day and unknowingly, through his simple music that he is creating, he is assuring me how things will be okay, and to just relax, stand back or sit back, if you prefer, and enjoy this show called life.

I remember back when I was still in high school, as we went home from school in our Ford Fiera in the midst of traffic in the streets of wireless avenue in Mandaue, I used to sing. I am not by any means a good singer. But I remember how I just sang my heart out, whether it was a popular pop song or a new gospel song taught in music class. Back then, it just took me out of the drabness and annoyance of the traffic and the travel time. I felt good and energized. I felt that despite the mountain of homework and studying to do when I got home, it was all going to be okay because I had my music. Oh and when I finally got home, the radio has to be turned on to my favorite music station. And in the late hours of midnight, when I finally finished any last pages of studying, I slept soundly, ready to face another day.

Reflecting on this memory now, I realize how much I have lost this. This music. This need to serenade myself with songs of artists that immortalize notes and falsettos. The attitude not to take life too seriously, the ability to let go, rest and re-energize. In the hustle and bustle, the traffic of real life-- marriage, kids, family, work, I somehow have forgotten what it is to just take it all in and relax. I forget that in order to be able to cope with all that life has thrown at me, I do not need to barge in and confront it immediately all the time. I need first and foremost to gather strength. And to gather strength, I need to step back, lay low and bask myself in a little music and to let go of things I have no control of.

Once again, who better to remind me of what will save me from the chaos and hailstorms of life than my beautiful, beautiful 6-year old of a son? Maybe he is simply telling me, "Stop with all the analyzing, Mama. Stop with all the thinking and worrying. Try a little singing. Or I can sing for you to soothe your aches away." And what do you know, my heart just opens up to this possibility and I am comforted. I am able to step back and breathe and gather strength.

Someone told me once or rather posted on my FB wall , "You are given this life because you are strong enough to live it." I remind myself of this everyday to push myself, to never to give up. And I realize now that the reason why I am strong enough to live it is because sources of strength abound everywhere in my life. I was gifted with resources to build on the strength I need. But more importantly, I was given the ultimate source of strength in the person of my Little Prince Garret and Feisty King Morgan. They show me in numerous ways that I can carry on until the very end. And for today, Garret is serenading me with his angelic voice. It does not matter that he is singing a nursery rhyme. He is telling me that it is ok, it is okay to let go, relax, rest, and never to give up and that with just a little humming and singing everyday can be a better day than the last. And with all the universe has planned out for me and my family, I find myself trusting in my little Prince's serenade the most.

Tuesday, November 1, 2011

No Stone Unturned

I arrived late at the Sped Center for the Senior Students' Career Talk on Special Education. As per my instruction, Teacher Loiz and Teacher Prinzer had already started their speech to the students and all were rapt with attention. Weeks before, they also got to listen to a Speech and Language Pathologist talk about Speech Therapy as a career, and a Special Education Student who was also a graduate of St. Paul's School.

Apart from this being a part of the Guidance program of the school, I ultimately had a hidden agenda why I had to give them a first-hand experience or at least a concise glimpse of the world of Special Needs. Understandably, I wanted just even one or two of these students to consider taking up Occupational Therapy or Special Education because my children need them. Many parents need therapists and special ed teachers for their kids. For how long? Well for some, a few years, for others, quite a long time. The unfortunate reality especially in our country, is that these graduates eventually prefer to work abroad because of the better pay and working conditions. I do not blame them for their choices. They too are trying to make a living and a comfortable life for themselves and their families. Well, so am I. I am striving to make my boys' life as comfortable and as secure as possible. And if I have to use my influence to convince these 16-year olds who are already deciding the career path for themselves, deciding their future professions, then I will. I intend to leave no stone unturned. Even if they choose to work outside Ormoc or even outside the country, then I will still have done my part in helping our world of special needs.

Teacher Loiz and Teacher Prinzer shared to the students on the importance of acceptance and a non-judgmental attitude towards special kids and adults. And the stigma attached to being a special child. Discrimination, bullying and disrespect were also three of the many issues the sped teachers emphasized. They also briefly discussed ten things they ought to know about Autism. And later they summed up the calling and commitment that a Special Educator needs to have to be truly a great teacher. The students had several questions. One of which was, "Will these special children ever be able to go to a regular school?" This was fairly easy to answer so I explained to them the spectrum of the Autism Disorder how some high functioning kids do get to be enrolled in the mainstream, but that the school should also be prepared to welcome these kids into their regular classrooms. I also explained to them how the kids on the other end or in the blurry areas of the spectrum will perhaps never be able to go to a regular normal school. And our goals for the children in this group is mainly for them to be independent, so they can bathe themselves, dress themselves, feed themselves, cross the street by themselves, and in the future make a simple living perhaps. The seniors nodded in understanding. Did I answer their question? I certainly hope my answer satisfied their query that goes beyond nodding. I badly wanted them to understand the gravity and importance of Special Education.

Another question came up. The Computer Teacher who accompanied them, Sir Edgar asked, "Do they know that they are special? Are they aware, Ma'am, that they have this particular kind of disability?" It took me awhile to consider it. Because this was the first time that I was actually confronted with this kind of question. I collected my thoughts and this was how I responded, " Do they really need to know that they are different from others? And if so, would it matter to them? From the moment they were born, what they know of is the world that they are currently living in. And what would it do to them if they were told that you have this kind of disability so on and so forth? Maybe with the proper guidance and help from people, they are able to blend into the norms of social conduct perhaps after being aware. Perhaps it will help them learn to say "sorry" after being unintentionally rude as in some cases for children or adults with Aspergers Syndrome. Well, it is the parent's decision to tell their children. But seriously, we all know it doesn't really matter if they know they are different. We all are anyway. Maybe our children's differences are just more marked than the normal ones"

But, really, I believe that all they need to know in this life is that they are loved, that there will be difficult times, but they can get through it. They may be different, but it doesn't change the fact that they are truly, truly loved for who and what they are. I further explained to them, "Coming from a personal place, you all need to understand how Garret is more than his Autism. He is not just autistic. He is many other beautiful, wonderful, quirky amazing things. And you need to have eyes to see beyond the faces of these special kids. They are more than their weirdness or quirkiness or disabilities. So it just does NOT matter if he knows he has autism or not. It just doesn't.

I hope I got through to them. "Did I answer your question, Sir Edgar?" I wanted to be validated. I wanted to give them the right answers because this was a very important concern for me. If I did answer his question then perhaps I can feel I have made that step in furthering the awareness and creating a sense of social responsibility of these teenagers who will soon be adults in the real world of normality. I heaved a sigh of relief when Sir Edgar responded, "Yes Ma'am.".

Finally it was time to end the Career Talk. I didn't plan on giving any closing speech or anything, but I did. And words were not only the one given away.

"The main reason that I wanted you guys to really have a glimpse into the world of special needs, our world, Garret's world is because we need you. I need you. We need individuals who will be future special educators or therapists who will make a significant impact on the lives of our children, teach them the simplest things on how to survive and perhaps learn the very simple ABC's or 123's. And if you won't be teachers or therapists because it's not in your heart, it's okay. But if you can look at a special child now and see him with new eyes and are able to accept him and see him as a miracle, then that's all we need. That's all we really need. The other reason that I started your career program with the special needs profession is because I need to tell you how lucky and how fortunate you are. You have skills and abilities that will get you through your academic life, let you march down the aisle with your diplomas. You have the power to create your future, plan out your path, achieve your dreams. Kaya ninyo ni tanan. (You can do it.) You can be whatever you want to be. In our case, the dreams I have for my Garret will remain as dreams. I wanted him to be a theater performer or a writer. But apparently, God has a different plan, different set of dreams for him. I won't be able to see him hold a diploma. And I've come to accept the fact that we will grow old together. You, on the other hand have the ability to plan out your entire life and make all your dreams come true. You can make it happen. So make it happen. But most importantly, and perhaps the most important thing of all, you can express how you feel through words. You can say "I love you.", "I'm sorry." "Thank you." You can say it because you are given the ability to speak. So please speak. When you go home to your parents, please tell them how much you love them. Tell them how much they mean to you. I don't know if Garret will be ever able to say "I love you" to me and his papa. But of course he says it in so many non verbal ways.

And look at the person sitting beside you right now, your friends. They say the best years in life are in high school because it is usually where friendships for life are formed and carved in stone. I don't know if Garret will ever be able to have a best friend like you do. But you have them right now. So appreciate them. Every single day. Tell the people you love that you love them because you simply can tell them. See how blessed you are. There are no limits to what you can become. You can be whoever and whatever you want to be."

As I spoke these words, of course, it didn't come out as eloquently as you may have imagined. I may have a gift of the written word but not so much with the actual talking more so with the emotional lump in my throat all the while I was ending the talk. Again, I hope I got through to them, if not many but at least some. The senior boys were actually silent and some of the girls were starting to well up with tears. But I think the most important validation of all for me, for the sped teachers and for the special needs community is when even just one person's perception is changed when he looks at a special child with love, understanding and acceptance. When even just one person has come to better appreciate the life that he is given simply because he realizes that he is blessed with many blessings that other people do not have. When a person is able to live a very thankful life, this is our greatest validation.

When one becomes a mother, or a parent for that matter (not leaving you out, fathers, of course) your whole life changes. Your perspectives change. Your priorities change. Your choices change. But the most important change of all, I think is when you realize with all your mind, heart and soul , LAWAS ug KATARONGAN, that you will leave NO STONE UNTURNED for your children. There cannot be any room for mediocre effort. There is no such thing as half-baked love, no such thing as weak striving. You are then able to experience and learn what UNCONDITIONAL LOVE truly is. You realize how your heart was broken by some old boyfriend or girlfriend in the past and that it was just a prick of a needle compared to how you feel when you just imagine your own child being hurt by the cruelties and realities of life. And you find yourself every single day purposefully LEAVING NO STONE UNTURNED for your children.

There are numerous battles I am facing right now, just like any other human being who has decided to enter into this amazing world of parenthood. And I think the light at the end of the tunnel is still far away. But a friend just reminded me how I am a warrior and how I have so many things to teach people. How I am enough as a person. How I must not accept defeat and pain. I am strengthened once again to carry on. Garret and Morgan need me to be at my best every single day and I cannot leave any stone unturned, even if it just means convincing a few students to be a special educator or a therapist. But I think, the greatest act of "warrior-hood" I can give my two boys is simply to be thankful for what I have, to be strong and not be overpowered by the battles I am facing and to carry on and not give up and have faith that the Universe has a plan greater beyond all imaginings and to trust in that plan.

Friday, October 28, 2011

Tougher than Life

It was already 11:15 a.m. Fifteen minutes more to go before Garret finishes his Sped
Class, when I heard his distinct whine or more like crying. I went in the other room to ask the other teachers what it was about. One of the teachers showed me an artwork made by one of the students which was made of a yakult bottle painted yellow with a smiley face on it. "Nahadlok si Garret ani pagkakita niya ani mam. Mao to ni hilak siya kay naka kita cya ani." (When Garret saw the yellow painted smiley yakult bottle, for some reason, he got scared and cried.) It took him some time to calm down, all the while his teacher was telling him that it's ok, while he was dressing up, which was part of his self-care activities in class. When he finally went out from the classroom, he was okay already although there were some tear streaks on his face. I wiped his cheeks with my hands. " It's okay, kuya. It's okay. Don't cry na ha. It's just a small thing. And you are a big boy. Don't be afraid na ha.", I comforted him.

When the teacher showed me the yakult bottle art work, my immediate reaction was that of pity , for lack of a better term to translate "lu-oy" , for my child. He was scared of this miniature piece of work to the point of tears. At that particular moment, my heart was twisted in knots as I felt his fear. Of course, there is no rational explanation as to why Garret would be scared of it. Much like why children are afraid of certain things, like the dark, for instance. Plain and simple, he was just scared. And he just needed it to disappear and he just needed somebody to tell him that it's okay. Obviously, he recovered quite quickly. HE did. I did not.

For the past weeks, I have been in a blizzard of emotions to the point that my writing pen ran out of ink. I felt I needed to experience all the hail and rain and flood so I can purify my system. I needed to reexamine my principles, my values, who I really am, what my role is, what my purpose is in this life and where home truly is. And at some point I felt that maybe I couldn't write again because of the monsters I was and still am facing. But just like all the other miracles in my life, I was given another one to pull me out of the pit I was wallowing in. And yes, the miracle worker was my son.

At that particular moment when I saw the object that he was so afraid of, it was as if a rock was thrown at me and shook me out of my senses. It was as if the Universe was telling me, no, yelling at me , rather, " See, you are not the only one facing monsters in your closet. Everybody is facing them, including your own son. And look how he has dealt with it. And it is perfectly okay to be scared. It is okay to be scared shitless about it. It is okay to weep and rage and be angry. But more than anything it is okay to pull yourself together because life is too beautiful to be stuck in this situation that life has thrown at you."

To try to explain Garret's fear of this particular object and other scenarios he is scared of will be like understanding why the earth is round, why there are stars in the sky and why the sun continues to beat down on our faces even if our grief is overwhelming. Children with Autism have sensory dysfunctions which just simply means, that their system cannot process and filter information the way other normal children do. Their systems cannot cope with the sensory input from the environment like a click on a button. And so when their fears manifest, their reactions are extreme and full blown most of the times. Eventually they recover and they are able to manage their fears through constant exposure and adaptation. What the Sped Teachers and Therapist do is to desensitize them, to expose them constantly to the cause of their fear assuring them all the while that it is okay. Simply speaking, Garret, along with his other classmates are made to face their fears, whether it is a visit to the dentist, getting a haircut at the barbershop, a visit to the doctor, a plane ride and many others. Once they get the hang of it, they are also quick to recover and act as if the dental clinic is their own territory. In the process, they learn to adapt , they learn courage. They learn to be resilient. They learn conquer what they are most afraid of.

So you see, my son is stronger than I am. He is teaching the kind of strength and courage that will carry me through these tough times. He is showing me how stronger he is than his fears, his eccentricities, his sensory processing disorders, his autism. He is stronger than all these combined. He is teaching me that life is tough but he is tougher. And so am I. Garret is teaching me that it is okay to be scared. It is okay to be afraid of the future and all the uncertainties that go with it. It is okay not to know what will happen sometimes. It is okay to take risks and give it all that you've got. It is okay to fight until the very end even to the point of no return. And it is okay to confront the thing that I am most afraid of. It is okay to ask the important questions to which I have no answers yet, " What will be my sons' future? Will I live long enough to take care of them and keep them safe from harm or at least long enough to have taught them the necessary skills to face the hurdles of life head on? Will I be able to hold it together and never ever give up? Will I have the strength to persevere? Is my back strong enough to carry all the crosses? " But the most important lesson he is teaching me right now is this: It is okay to not be the thing I am most afraid of. Because I have a choice. And it is perfectly okay to choose to have courage, to have strength and to carry on.

The dark, the bogey-man, the monsters in our closets, all these we face at one point or another in our lives. They come in different shapes, forms, sizes, age, milestones, people and circumstances. I read one quote that we are given the same test over and over until we pass it. Our fears will follow us wherever we go until we confront it. And there is no other way for it to disappear until we face it. We may choose to shut our eyes tight, cover our ears to dull the pain and stinging sensation of it all, but eventually we will have to open them and welcome and experience all of it. Because this is the only way to truly be alive. And no matter how scared I am right now, I will muster up all the courage to experience every bit of sting and ache because I have been given this life to live. So that when my boys turn to me at the time when they encounter monsters bigger than the yakult bottle smiley face, they can see how strong I have become and they will be able to channel my strength in their own lives and realize how tough and how strong they are than they realize.

I hold Garret's big boy hand as we go out of the Sped Center and into our pick-up where his papa Andro and brother Morgan is waiting for us. I look at him and he is already smiling just as if the yellow smiley yakult bottle thing did not even occur. I know that when class resumes, his teacher will ask him to confront his fear and look at the object. And he will be scared. And he will cry. And it is okay. But I know in my heart, that before we all know it, he will be holding it in his hands, fear conquered, no longer afraid, just like I will be.

Thank you, my life partner, Andro-- for our life, for our Garret and Morgan.

Thank you my Little Prince.

Thank you, Universe for the life we are given.

Monday, October 10, 2011

Two Little Footprints

Restful sleep. Peace of mind. This is what I have been praying for these past few weeks. And I just couldn't seem to have it. The slightest movement or sound irk me. And thoughts surround my head creating chaos and confusion in my mind. Questions bombard me, What if? What can I do? What should I do? Why did this happen? What is the meaning of all this? Why has it come to this?

I remember back when I was still a grade schooler, my mom would pick me up from school and because of the traffic and travel time from Don Jose Avila street to Mandaue, and tired from all the school work and playing, I would fall asleep on her lap. Soundly that I didn't want to wake up even when we arrived home. I remember her stroking my hair and singing songs that carry me to a restful slumber. When I was about to give birth to Garret in March 2005 undergoing very painful labor, her hand holding a cool damp hanky across my forehead comforted me and carried me through the pain.

Reliving all the memories that brought me a sense of peace and calm reminds me that even now in the darkest moments, I can still have that peace. And it is more beautiful after a long bout of struggle. And I need to remember how in order to have that peace, I don't need to struggle anymore. All I need to do is just to surrender and let go. And let the Universe flow. Easier said than done. Until my Little Prince showed me how to do it and gave me what I was searching for, yesterday.

I climbed into his bed yesterday after lunch for their afternoon nap. Morgan sleeps every afternoon. Garret just lies in bed usually and rests his 6-year old body and perhaps his thoughts. I lay down and embraced my little prince. He wanted me to tighten my grip around his belly and I did. I fell asleep for about 10-15 minutes until he stood up gesturing me that he wanted to get out of the room already. I ignored him hoping against hope that he would comply so I could get that much needed rest. Surprisingly, he got one of the pillows and positioned it on the edge of the bed, on my usual side and lay back down. I embraced him again. He started humming and singing in his most gentle voice, incy wincy spider, old macdonald, and finally "this is the way we comb our hair, comb our hair, comb our hair". I couldn't remember what else he hummed or sang. I fell into the deepest slumber I've had in a long time. Two whole hours. And Garret didn't move a muscle. He just let me sleep. He looked after me while I was sleeping. He watched me sleeping. He let me go to sleep. He gave me that peace I was searching for. When I finally awoke, I looked at him and he just smiled at me. My little prince just smiled at me. And I smiled back. It was all I could do not to let my tears fall. And I said, "Thank you Garret." With this I took his hand and we went out of the room. Oh and yes, Morgan was still snoring his cute butt away while all of this magic moment happened deeply asleep in his own slumber as well.

We went to his keyboard and he requested that I play his favorite tune. And when the music started he was content. And I was still in elation at how Garret gave me the most restful sleep I ever had for a long time. And then it just dawned on me. I don't need to analyze anymore. I don't need to torture myself anymore with questions that don't have answers. Not just yet anyway. In the chaos and confusion and hurt and pain, sometimes all I need to do is close my eyes and let go. Garret is teaching me that there need not be any grand explanation why things work the way they work, why things turn out to be the way they are. Sometimes things just happen. Autism happened to our family. And until now there are no clear reasons why. There is still no cure. There are still no fixed solutions to every Autism Crisis we face. And it is okay. We are not in control of what happens to us. We are in control of how we deal and react to what happens to us. And it could be either way-- be exhausted trying to find all the reasons in the world or to just let go and trust in the Master Planner and Maker. And as with any other circumstances in our lives, marriage, work, or otherwise, it goes without saying too. We can do all we can in our power to control things. But in the end, the dynamics of human life, love, interaction, and decision-making take over...So despite and in spite of all the chaos and confusion, we can still choose peace over exhaustion. I need peace. I choose peace. And how blessed am I to have my Garret comforting me this way-- showing and teaching me the way. I am not only blessed. I am loved.

My favorite comfort passage has always been Footprints in the Sand, where in the end the man asked, " In my darkest hours, why did you leave me? And God answered, My child, when you saw one set of footprints, it is when I am carrying you."

I always believed I would just feel by faith that I am being carried by the heavens when I am in my darkest hours. I never thought I would SEE that one set of footprints in my darkest hours. But I did. Two little footprints of my little boy carrying me into a peaceful slumber, a restful sleep. my long-yearned peace.

Tuesday, October 4, 2011

The Gift of Choice

"Okay, it is time to play Sack Race!", the Sped teacher enthuses. Four boys then form two lines and prepare themselves. "Ready, get set, go!" One boy then slips both legs into the sack and smiles the most heavenly smile, eyes crinkling at the corners. He covers his mouth with his hand as he laughs and starts jumping to the goal post, not really caring at all that it was a race. He just seemed to be so happy about the entire game. The boy's mother watched this whole scenario from a corner room. And as she saw her son's face full of rapture and joy and laughing at himself because the sack slowly slipped from his legs so that he had to put it on again and was way behind the other team, all her fears and anxiety disappeared into thin air. "My son certainly knows that there is no shame in not getting through the race on the first try." With the help of the teachers, he just readjusted the sack and continued jumping and laughing all the way to the starting line.

Of course, by now, you must know the little boy was my Garret. And of course I was the one watching from the corner room. The story of my life is hardly conventional and cliche. The challenges I face may be different or more difficult than most people but while this is true, there is one common ground that allows me to be one with the rest of the human race. And this is the decision to rise up to the situation as it arises. To step up to the plate when it matters most. To fall 7 times but to rise 8 times and even 10 times more. There is no shame in failing. The shame is when I refuse to stand back up, look at what I've tripped over and resolve to learn from it and do better next time. And as I've said this many times before-- to do everything and anything that goes beyond any human capabilities. Watching my son two days ago practicing his sack race game truly gave me a sense of overpowering calm and clarity about how I should start looking at my life. How I should start living my life and not just talking about life lessons and such.

Garret was just so happy that it was play time. He didn't care that he had to win. He just had to complete the course. He happily put his both legs in the sack and jumped, jumped and jumped.

I should view my own journey like what my little Prince just did. Seeing it as one to be enjoyed and relished. To do what one must do-- to work, to laugh, to play, to love -- in the real sense of these words, get both my legs working and jump with joy at the innate reality that I am given another life to live every single day.

When the sack was slipping off his legs and he had to stop, he just bent down, with his teacher's help and wore the sack again and was off again jumping back to the starting line.There was no crying or signs of frustration on his part. He just fixed his sack and went on, still smiling and laughing alternately.

From now on, I must bear in mind how the most important thing is to pick oneself up and move on. Sure, for the emotionally over developed human beings with cognition and all, a little time for wallowing is allowed. I am sure we weren't born with a hypothalamus without a purpose. It is what makes us a whole, complete human being. Our emotions give us a touch of humanness that is elemental to survival. But after the weeping part must come the resolve to go on, to move on to the next step. To move forward towards the light at the end of the tunnel. And it does not matter how long the tunnel is. The objective is to keep going and not get stuck. Life goes on. So should I. And if I should need help, all I need is to swallow my pride and ask for help. There are people just waiting in the sidelines to help me. I just need to ask. Even if I have to face my monsters alone, I can gather strength from friends and family to face it head-on. And as Garret was laughing all the while, I remember a line from a t.v. series, "If you take life too seriously, it ceases to be funny." Hopefully in the future, I can look back at the mistakes, wrong decisions I have made and laugh at it. Laugh at myself. And see the absurdity and wisdom of all the hardships I am encountering right now no longer with a heavy heart. And perhaps in the future, should another wave of challenges come, I can learn AND decide to laugh at it.

When Garret returned to the starting line, he was instructed to sit down as his turn was finished. He happily went to his seat and watched his teammates perform the race. He did not care at all that he caused his team to finish last. Nor did his classmates. He did not beat himself up over it. He was just happy he was able to play the game.

Autism may have given Garret a blessing to know only the very essential things in life: and one is the ability to enjoy the simplicity of every moment, every game, every endeavor and not to place unnecessary emotions that tarnish the very purpose of it. Most people--we in the normal spectrum do tend to complicate things. We can't help it though. With our brain wiring, our mental process and emotional baggage, with our expectations, it becomes automatic. So maybe as the alarm goes off with the rise of incidence in Autism maybe the Universe, life, God is telling us or sending us back to the basics. Simplify. Enjoy. If you fail, try again. If you fall, stand up. If you need to cry, cry. Then wipe those heartaches away and heal. Maybe we have been to hard headed for the longest time. Maybe I have been too hard headed for the longest time that the Universe had no other choice but to send me the most concrete message of all in the person of my little prince. And the message is telling me what it takes to truly live the life I was endowed with and to deeply love with a love that knows no measure, sees no expectation, sees all things, accepts all things and to be grateful for everything.

Garret's life is different from the rest of the world. His brain is wired differently. I've always pondered on whether he can make the hard choices when he grows up, the way I've made choices. Or has Autism determined his life? Maybe, maybe not. Garret may have truly enjoyed his game not because he chose to but because it is automatic for him because of his Autism. Everything remains to be seen day by day. And day by single day, all that matters is that I am learning through my son. I may have no clear answers to this question yet. But one thing is very clear to me. I've made choices. I am making choices. For now, it is my role to make decisions for myself, for my boys, for my marriage. Because I am able to. I am wired to. The choices I have made and will make define who I am. And all these choices must be based on love and an overwhelming appreciation of life, no matter what.

I choose to work.
I choose to play and enjoy the game.
I choose to journey even to the point of no return and enjoy the ride.
I choose to get back up 10 times more after I have fallen down 7 times.
I choose to heal.
I choose to love.
I choose to forgive. Others. Situations. Myself.
I choose to be grateful.
I choose to truly live.

So, Autism, thank you for making me realize how blessed I am to have choices, that it is in my own hands to create my fate, to reach my light at the end of the tunnel. When the time comes, if I am given the ultimate gift for Garret to understand my words, I say to you, My Little Prince, "Thank you so much for showing me what life truly is. Again and again, how loved I am by the heavens to have been given the greatest gift which is you..."

Wednesday, September 21, 2011

Life Lessons at 31

I'll be turning 31 come October. The end of the calendar, they say. I am not at all anxious that I am growing older which means not anymore in the exciting vivacious 20's, and hello lines and cellulite. Nor should I be anxious, worried or scared. There are tougher questions to face and this is one of them: Am I a better person than I was 10 years ago, five years ago, or even last year?

For all that our family has been through for the past 6 years, I have learned to accept things that are beyond normal, beyond convention, and even the most absurd.

Garret, whom I tirelessly call my Little Prince, is one beautiful boy who is physically healthy. He has no physical disabilities. But when you ask him a question, he will not answer you. And to get his attention for him to look you in the eye, he has to be prompted to look at you. He does not play with blocks like other kids creating a castle or a house. He lines them up according to color, shape and size. He fiddles with them with his hands flapping in delight. He does not play with toy cars for the purpose of racing them. As the wheels turn, he lifts it up and is mesmerized by the quick turning of the wheels until it becomes a blur to him. He does not like to get into the swimming pool. But with his plastic tub of water he brings it to the bathroom, fills it with water from the shower and splashes in it for hours on end. He does not eat fried chicken or spaghetti. He prefers crunchy, crispy meals such as crispy pork chop, bacon or spam. When he sees a bottle of water, he does not look at it as a medium for drinking. It is a thing of amazement for him as he side gazes it and turns it to the light making the water glimmer in his eyes. When he wears his shirt, the tag must come off. It scratches his skin and it is painful for him than most kids. When he sees a candle, he is simply excited, stimulated and cannot stop looking at it even attempting to hold the fire. When bubble playing, he does not want it to stop. Literally. When he wants something and I do not understand what it is he wants, tantrums come, sometimes in exponential levels and most of the times now in manageable ones, for which we are all grateful. When his favorite cartoon is on, he just watches it for a while and plays with his spring slinky, making it go round and round or beating it on the bed, again, for hours on end. He does not attend regular school. He goes to Sped School, Occupational Therapy and Speech Therapy. He screams and cries and whines whenever we go to his doctor because he clearly remembers to the last detail his last vaccination shot and that it was painful. No amount of explaining such as "no injection today" will do. When going to the dentist, we have to desensitize him by letting him visit a few times just to feel the place, his teachers have to dress up like dentists and we have to procure dental materials to simulate the tooth extraction. All these so we could have a successful tooth extraction. And when I say successful, I mean not too much kicking or screaming. During birthday parties, he runs around not joining the game or prefers to stay in one spot where the light is beautifully reflected on the leaves of a plant or when there's a water puddle. And if given a choice between running around and staring at that water puddle, he chooses the latter in a heartbeat. He follows a fairly fixed schedule 6 days a week. Sped Class in the morning, joy riding in the afternoon, Occupational Therapy Thursdays, Speech Therapy Sundays once a month. Holidays are difficult for him. He doesn't understand the "no-class" possibilities of play and sleeping late. He questions in his own way why no class when there should be. And during this time, we have to get out of the house and take him joy riding, or else...His bag is packed with Graham Crackers. He prefers this brand of crackers. Period. He does eat eggnog biscuits but prefers Graham crackers. He lines up our slippers and shoes if they are scattered or simply hides them especially when he sees that it is not in symmetry. When relatives come, he does not greet them, "Hi or Hello." He cannot sense danger like most kids. When he is in pain, he just cries and says, "yayay" but when you ask him where his yayay is, he cannot tell you or point at the "yaya". He does not say "Papa" or "Mama", but he can say the numbers 1-20 over and over and hums in perfect tune Twinkle, twinkle or Incy Wincy spider. He does not comment on things that interest him. But when he likes the blouse I am wearing, he never stops gazing at me, smiling at me and kissing me, showing his appreciation, again in his own way. He does not say "I love you" to me and his papa but when the rare magical moments come, he holds my hand, interlocking his fingers with mine, sits on my lap, faces me, puts my face on both his hands and smiles at me eyes twinkling, then embraces me with the warmth that erases all doubts and fears and hurt and anger.

Garret is 6 years old. In the normal setting, he should be doing this and that, more of this and that. He should be speaking and attending Grade 1. He should be having best friends who turn into boxing partners in a second and back to best friends again. He should be many things by now. In a normal setting. But his world is beyond normal. His world is different. Garret is different, unique, special, unconventional and his way of life is for some, absurd, even scary. To meet his everyday needs, physical, emotional and psychological needs, we have to be up and running and on alert almost all of the time. Our patience is stretched to the limits, and when we reach the limit, we find out we still have that extra stretch within us for our Little Prince and Feisty King. "Normal" is not in our vocabulary. And Autism has taught me that it need not be. It is not a bad thing. Sure it maybe stigmatizing for most people in the normal society. But I think I may have come to this place of peace that what matters in the world is that Garret and Morgan is in their happy place. Nothing more and nothing less. Autism has taught me that I need not live my life according to the unnecessary pressures of normality. In fact, everyday is a break from normality, a reveling in the extraordinary.

Autism is reminding me everyday of the most important things in life and all that really matters in the end-- Garret, Morgan and Andro. To love them with a love that goes beyond human understanding, to accept who they are, what they are and what they are to become-- all their frailties, insecurities, pain, joy, accomplishments, their eccentricities, beliefs, their character, all of who they are. I have learned to embrace everything with an open mind and an open heart. There is only more to be gained. And as with the unpredictable outcomes--good days and bad ones, that we experience everyday with Garret's Autism, I have learned one very important lesson of all--to love without requiring anything in return, to give without expecting, and most of all to appreciate, and just be grateful for what is given.

So when the middle of October comes, maybe I can answer the tough question I am confronting myself with now, Am I a better person now than 10, 5 years ago or last year/ Here's my answer:

For all the things Autism has taught me, for all the things that my 3 boys have taught me, I would like to think I have become not necessarily better but a different version of myself. And I like this version better.

Monday, September 12, 2011

More Lessons from My Little Prince

Garret was finishing his therapy as he and his therapist went out of the center to do three rounds of walking with weights tied around his belly. In the activity area, Grade 1 kids were playing around with a ball, kicking and going after it, screaming happily as the ball flew way up into the air and somebody caught it. As Garret and his therapist passed by the activity center, all intents and purposes of walking disappeared as Garret immediately joined in the group running around and laughing as he chased the ball with the other Grade 1 kids. He was the only one in the group not wearing the standard uniform so he was quite easy to spot. There was this one particular boy who especially gave the ball to Garret and told off the others not to grab it from him, saying, "Ayaw sa iloga ha, ipa-kick sa ni Garret." (Let Garret kick the ball first, don't grab the ball from him.)The rest of the kids then cheered him on, "Kick, Garret!" They all followed suit. My little Prince charmingly smiled. taking his time holding the ball with both his hands at chest length, dropped it and kicked it way up high almost at a 90 degree angle. The rest of the students cheered and they chased the ball again running right to left, in almost all directions, Garret, running with them just like any normal 6-year old.

You may be asking why this is such a big deal for me. For most parents, this is normal activity for children, playing around, running around, sweating their shirts off. What comprises the dynamics of a game--playing, is their ability to take turns, wait for their turn, know and understand the rules of that particular game, whether it is "the first one who finishes wins, or the team who scores the highest wins and the lowest loses", and to simply enjoy the company of their play mates, teammates and friends. For children with Autism, most often, this feat is a challenge at best. Social impairment marks their territory-- the inability to put themselves in another person's shoes, thus turn-taking and waiting is a challenge for them. Social cues are foreign to them. It is difficult for them to understand that their playmate feels bad because they grabbed the object without waiting for their turn, or they grabbed their snack without asking for permission. They don't get the cue that in order for their team to win the game, they must act quickly, run quickly, kick the ball as soon as they can to the goal. And one of the most distinct characteristic among children with Autism is their inability to allow others to play with them. This is why we see them playing by themselves in the corner with their piece of string or a set of toys all lined up or stacked up. To begin allowing other people to play beside them is even a challenge for some of these kids. Parallel play.Teachers, therapists and parents have to teach these kids how to play with other kids. Socialization. It may seem almost robotic that we have to teach our children social cues and how to react to them. Everything must be structured to provide some sense into their world. Spontaneity is a rare treat for them and for us parents, especially when it comes to human connection.

So, yes, this is a big deal for me. Garret was anything but robotic when he decided to play with the Grade 1 students' game without hesitation. He ran around with these kids allowing them into his world. He tolerated their presence, not getting annoyed when they bumped into him or shoved him or screamed aloud. When he was bumped, he just laughed and bumped them as well. When he was shoved, he recovered and ran around chasing the ball again. He waited for his turn to kick the ball. And he didn't mind when somebody grabbed the ball from him. In fact, they were the ones who became impatient when Garret just took his time to position the ball properly first before kicking it. And when the ball flew way up, my little prince just beamed with joy. He was sweating. He was exercising his body and social skills. And more than anything else, he was enjoying the moment, the company of the kids around him. He was truly enjoying. He was connecting. Spontaneity, Tolerance and Enjoyment-- a rare treat but on that particular day as Andro and I stood by watching him, we were blessed with another miracle. Once again, Garret showed how he defied the boundaries of Autism. He is stronger than Autism.

In all of Garret's undertakings, milestones achieved and not so good moments, I strive to extract the best of it. I ask myself all the time, "What does this mean to me? How can I learn from this?" Garret has long been teaching me the ropes of life, not the other way around. This time is no different. There is no such thing as mundane when it comes to my two boys, correction, three boys. (wink). My life is more meaningful now as I learn to treat every little achievement as one great miracle, one great gift. So what have I learned from this recent experience? I think it may be this:

In my relationships, it is important for me to realize that everything must start and end with the heart. Sincerity, Spontaneity. The decision to form a relationship must not be forced upon. It must come naturally. And if I find that there is some hesitation on my end or on the entire circumstance that the relationship is built upon, then it is worth looking into it. Everything else that is not synonymous with sincerity is a waste of time. Life is too short to be wasted on superficiality and for reasons like "just for the sake of whatever".

Tolerance. The ability to acknowledge individual differences. The ability to understand social cues and emotions. I must remind myself that every human being is his own person, with his own quirks, priorities, perspectives and choices. To accept them as they are and perhaps to stretch my own frame of mind to understand theirs. And even when the unthinkable happens when personal boundaries and principles are defied, I must realize that in the end, we each are built upon our own choices. And our choices cannot be forced upon.

The Ability to Enjoy and Cherish the Moment as it happens. When was the last time I allowed myself to relax and stare into space for no reason other than to just stare into space? When was the last time I laughed so hard until my insides hurt not thinking that the laughter won't last long and will be replaced with other more serious matters? Even with the challenges of our family, I need to give myself some space and time to relax and truly enjoy and care for my soul. Without it I would dry up, burn out as I often do. I need to learn to let go. I need to learn to enjoy and cherish every happy moment as it happens and nothing else. Life is short. And I have been blessed too much in this life not to graciously receive it with pure gratitude and wonder.

The Grade 1 students Garret played with of course knew him. And maybe they are more accepting of him because they see him everyday. At their young age, they know nothing of peculiarity, weirdness or abnormality. They are spontaneous creatures who accept anybody who enjoys the games they're playing. And somewhere along the line of growing up as we all did, we lose the very essence of which these children know-- spontaneity, acceptance and simple enjoyment. I've learned from my son from his Autism and all. Garret has taught me once again what I have lost. And he is telling me not to lose it again, and never to lose sight of it for this will lead me to my life's purpose, this will lead me and My little prince, my feisty king and my life partner home.


(To the Grade 1 student who so affectionately helped Garret and acted like his big brother, I have yet to know your name, thank you for showing me that my son is worthy to be a friend or a playmate at least. Your parents have taught you well. One of these days, I'm sure Garret will be the one to give back what you have given him in his own way-- pure acceptance and genuine friendship.)

Monday, September 5, 2011

Clear and Simple--The Way Life Should Be

15 years ago I remember we were preparing to start our Term Paper in our English subject. And one of the many advices our English teacher told us back then that is still stuck in my head was to use clear, simple language. Flowery words won't mean much to a research paper. Content is key. Concise, direct to the point. The goal was not to have 300 pages of meaningless words, but to have 150 pages full of content. Most of us wanted to impress the our teachers and the panel of critics who will finally decide whether we have fully accomplished our requirements to get that elusive diploma. We thought the more adjectives, the better. The more complicated and difficult-sounding words that get to fill in our pages, even better. I don't remember how I took my English Teacher's advice. I just know I passed the requirement. And I got to march on stage. Of course there was more to it than completing the term paper. But that is another story. This time it is a reflection based on the advice my English Teacher gave me.

"Look. Touch. " Garret is shown a piece of pencil. Then he is asked to look at it and touch it. The pencil is then hidden from his view and he is presented three objects-- a bar of soap, a ball and a pencil(non-identical to the one he was shown earlier. ) "Find.", the teacher says. Garret looks at the three objects pauses for a bit and picks up the pencil. " Great job, Garret!" This is one of many exercises his speech therapist gives him. It uses the concept of matching non-identical objects which develops his intellectual skill of classifying attention and concentration, a very important pre-learning skill. "Look, Touch, Find." Three very simple words. No frills, no adjectives. Clear, simple and direct to the point. And Garret learns easily. Since the learning styles of children with autism heavily rely on visual cues, the verbal cues that are given to them must be simple, uncomplicated, direct to the point, no-nonsense. They are taught the simplest subject-verb agreement such as: " I need help." or "Help me." In Garret's case, pictures or gestures are used. And when he likes to say it out loud, he is able to say, "water" or "cracker". Just recently, he insisted that we go out of the room and was able to say, "Out ta" three times. He was getting a bit frustrated as it took us some time to realize he spoke and we were exclaiming with joy. He on the other hand did not want to be praised, he just wanted to go out of the room. That was one wondrous moment though fleeting for us. There IS no other way for him to communicate except for the simplest language he could utter to us. And for us to communicate with our son, we have to convey whatever we want to say to him in Clear, Simple, non-flowery language.

My English Teacher's advice, I now realize was not only prophetic, as I am doing the best I can to communicate with my son, as I am living it with our family, but also unknowingly, she was teaching me how life really is supposed to be lived-- Clearly and Simply.

I should live my life clearly enough to serve a purpose that goes beyond myself, really look hard on my priorities, truly value what is important to me and decide and stand up to my decision. My purpose in this life is to live for my family-- our sons Garret and Morgan and to love them the best way I know how and love them the way they deserve to be loved. My purpose is clear that I cannot carry this task on my own without my partner. We are a team. And as with all team members who may encounter rough spots on the road, we have our share of challenges overwhelming at times but can be overcome if we just always, always remember what is important to us. Garret's Autism has only strengthened my resolve and faith that indeed, I am living my life with a purpose beyond myself. How clearly and truly blessed I am.

Simplicity. To be simple in word and deed. This was the credo that was taught and ingrained into our fresh minds all those twelve years before college. Simplicity in the way we wore clothes and we carried ourselves. For what use were jewelries and expensive gadgets to the very basic things in learning? After all, in the end, aren't values and how we treat people all that matter? In my life right now, I have learned, sometimes the hard way, that I needed to simplify things. Simplify the way things around the house work so Garret can learn best. So that Garret and Morgan can be happy. So that we all can learn best. Unnecessary stuff get in the way of appreciating the best things in my life. Garret does not care at all whether we buy him expensive toys or branded clothes. He only cares that we understand his needs. He only knows the very important things. He needs me to simplify his life. He needs me to simplify our lives so we can all fully appreciate every single blessing. At the end of the day, if what he wants is just for me to be beside him as he taps the number counting app on his iPad without doing anything, then I will. I don't need to multi-task as I needed to before. Simplify. I should be there for him when he needs me. This goes for Morgan too. When Morgan needs another set of straws-- his favorite toy now, yes, straws, the ones you use for drinking your juice, I should give it to him, no questions asked. This is his joy. Who cares if it's not your usual set of Legos or Tonka cars? His joy is simple, so should my contentment. Simplicity. It is a virtue. One that was taught to me many years ago, but only now that I have begun to realize its importance and value.

Clarity and Simplicity. Clear and Simple Language. As language does not only connote the spoken word but how we act towards each other, how we show our love to our children, how we value our life partner. Yes, our life should be lived in clear and simple language. For is there any other way to live?

One of the things I looked forward to upon finally finishing school was the "no more projects, no more term papers, no more thesis" part. No more facing a panel of judges who demand you defend your research. Finally, no more teachers making my grades. I was going to live my life on my own terms, without looking over my shoulder, finally, I thought. Or so I thought. How wrong I was. Right now, I am making the most challenging, most difficult term paper in my entire life. And the thesis adviser and teachers and panel of judges? Well, they are not as harsh. Let's just put it this way, I am striving every single day to pass the test, and the coverage of the test: Patience, Perseverance, Unconditional Acceptance, Unconditional Unwavering Love. Every single day, I pass and I fail. I fall down on my face, then I get back up. And How do I know I passed the test? It's when my two boys show me the smiles on their faces and give me their biggest and tightest embrace. It's when at the end of the day my partner and I seek the comfort of each others arms and fall fast asleep content and at peace. This is when I know I am living my life clearly and simply. Oh, and would you like to know the title of my term paper this time? Well, It's a working title as the contents of it is constantly a work in progress. Here it is: Living with Autism: Hope, Gratitude, Faith and Love. Feel free to critic the title. :-)

(Thank you Mdm. Pinili for all you have taught me. You truly are one great teacher. Thank you Sacred Heart School for Girls for teaching me the value of Simplicity....And of course, Autism for explicitly showing me the way to live as it ought to be lived and the Universe-- my greatest thanks.)

Monday, August 29, 2011

Dayenu

It is time for our afternoon joy rides. Papa is at the wheel and the three of us at the backseat. As we settle in, Morgan scoots over to the left side and sits by the window. Garret, on the other hand, is used to sitting on my lap, with both my arms wrapped around his belly like a seat belt. I tell him, "Garret, you can sit by yourself. Look at Morgan sitting like a big boy." He ignores me and is quite happy with the way things are-- him on my lap, secure and comforted by his mama's warm embrace.

Our family is unlike any other regular, normal one where when kids are packed in a car, the noise level is deafening from all the questions and squabbles that the parents can barely hear each other. The scenario that you can actually see when we go on our daily rides is quite different to say the least. Our boys are quiet, save for an excited remark or two when they see a big truck go by or a car speeding fast or when Morgan sees his favorite place of green rice fields and coconut trees. The 45-minute ride is mostly silent. Andro and I are then able to talk about anything-- our plans, our perspectives, our dreams, how our day went. But mostly, we are quiet ourselves. I comment on everything we see, "Look there's a cow and the cow says moo." Morgan sometimes looks at where I'm pointing, Garret too. I kiss my boys over and over while they are watching the world go by. I say to them repeatedly, " I love you, Garret, I love you Morgan". Of course I don't get a reply. And at these moments I ask myself, will I ever hear these three words from them? Or at least hear a simple "Mama"? Morgan is more responsive though. He loves to play on my lap and squeezes my lips when I enunciate words. He looks at me in the eye and smiles his peking duck smile and shrieks to his heart's delight. I will have to content my self with Garret's ready cheek when I ask him for a kiss. And if he is in the mood, he gives me his cute lips to kiss.

I remember 3 years ago when we were still starting to feel our way around this world of the Autism Spectrum Disorder. I was in a roller coaster of emotions not knowing what to feel, how to react, how to handle the reality. An aunt sent me a message that said, "Let us pray and do everything we can to let Garret know our love for him." Upon reading it, I remember my chest tightening realizing how it was indeed going to be very difficult to enter into his mysterious world, to break that barrier that separates his reality from ours. How was I going to let him understand the word "love"? Will he ever understand what loving means? Will he know how much we love him? These were my questions back then. At that point, I knew and understood how motherhood could be the most painful and arduous thing in the world.

Why is it so important for me to hear my son say "I love you" back? Why do I know that the word "mama" will make the most beautiful and comforting music to my ears? I am human. And as with all human beings, I need affirmation. I need validation. Don't all mothers agree with me? Whether you have children with Autism or not, aren't the words "I love you" enough to lighten our load and let us know that we have done right by them? For me, I just need to know that I have somehow chipped down some bricks on the walls surrounding my son's world. I need to know whether I have done everything to let Garret know and understand how much I love him with all my heart, my soul, my everything. I need to know whether I have shown him what it is to truly, truly love. Of course, now I have accepted that his language is different, his world is different, his personhood is different. And I shouldn't demand that he conform to my world and speak my language. He is his own person. And God has a purpose for this. But still... This is why when people say that they have never seen a mother so open-minded or so accepting as me, I always tell them, acceptance is an everyday learning experience for me. It's a process. On the bad days, I just badly wish Garret could speak. On the good ones, I am content with how things are. This is why my prayer every day is that even on the bad days, I remain thankful and say, "Dayenu"--Hebrew for "It would have been enough for us", coined from the 1000-year-old song of the Jewish Passover thanking God for all the gifts he has given to the Jewish people, that if they were given only one of the many gifts, it would have been enough. I pray that my faith will not waver and I will just believe that I have done right by my little prince and that even if I were given only one of the many blessings I have been given, it would have been enough.

We came back from a two-day trip two days ago from Cebu to get Garret's iPad for the purpose of him being able to use Augmentative Communication apps so he can communicate better with us, with the world. When we got back, my aunt who watched over the boys while we were away, excitedly relayed to us how Garret kissed her spontaneously as a request that she play with him some more with his spring slinky. She told us how she was tired already and told Garret, "I'm tired already, kuya, no more play na." Garret then approached his lola-auntie and gave him a kiss. Of course, who could ever refuse a request like that? We were elated. Nothing could contain my joy. At that very moment, I knew, I have done something right. Garret knows what it is to love, or at least show affection, or at least to ask properly and affectionately, not demanding or throwing a tantrum to get what he wants. After all, this is where love begins, right? Tiny bits of affection, no demands, just gentle requests. So what do you know, there was my answer. And the answer to my questions once again were in the most explicit, most undeniable, most immeasurable form--no words required. The answers most certainly spoke volumes, louder, much louder than words that I longed to hear from my little royalty.

Like with everything else in our life with Autism, there are still no overnight changes, the tantrums still come, rigidity and all that. We have come to accept all these and more day by day, or more like hour by hour and minute by minute. And the only way we have come to terms with what have been given to us is to be thankful for every single miracle and disguised blessing-- the silence in joy rides that allow us to quiet our mind and souls as we take in the scenery of rice fields and coconut trees, just as Morgan does, the rain and its coolness that gives us calm as it splatters on the windshield and our Garret and Morgan becomes ecstatic with happiness with it, the unexpected kisses we get when we lay down to sleep as Garret does after caressing our faces smiling with all his heart, happy that we are there beside him, the gentle tap on the hand as he requests for his favorite biscuit, oh and the happy dancing steps Garret makes after he plays ABCD on the iPad for about 50 times, and yes, our Chinese peking duck, Morgan already echoing the last syllables of our words, "Morgan let's go na" and he says, "nah". All these and many more would have been enough. All the little things, great things, bad and good things, beautiful and worst things that we go through with Autism and all ARE enough to show us how blessed we are, how wonderful our Life has been made for us. And when my questions come again when I long for Garret and Morgan to say these three words of love to their papa and me, I will close my eyes, feel the beat of my heart and say to the Universe, "Dayenu. What I have been given is enough."

One of my batch mates in high school told me how reading my posts have taught her what it is to love and to live a very thankful life. She said it so simply that even I who wrote all these words came to pause and reflected again on the very words she learned from my posts. Indeed, maybe the secret to acceptance is to love--to love with a love that needs no words and to be grateful for every single thing for every single moment in my life. Another lesson learned today. Today, I accept that it is okay even if Garret and Morgan cannot say "I love you or Mama" to me. Today I accept Autism in our lives. Dayenu..."

Friday, August 19, 2011

The Best Things in Life

Eating peanut butter from the jar
Dipping fingers in a chunk of chocolate cake
Munching chocolate bars with the chocolate
Smeared on my little one's face
A downpour of rainfall on the windshield
As the wipers swish-swash as
we drive through such beautiful rain
An unlimited supply of favorite crackers
And hearing the crunch-crunch-crunch
of all of it by his teeth
His spring slinky going round and round
up and down slapping down
on their bed
And the thudding sound it makes
like the beat-beat-beat of a drum
that serves only to calm
my little one's little world
Water spray from sprinklers or showers
or a pail or his plastic tub
Immersing him in
such never-ending stimulation
and delight
Plastic Easter eggs line up
in a spectrum of colors
amid the humdrum of the t.v.
The sight of his trike
if only with it he can sleep beside
and carry it with him in his dreams
The plunking of the notes
on the keyboard
Beethoven, Bach or
Twinkle-twinkle little star
Each key lights up as each note
reverberates and his grin
turns relentless
Oh and finally, Bella!
Our beautiful, beautiful Dobe
Staring, looking, stimming
at her raven black and tan coat
and her wet wet nose
He stays on all fours
sighting her features
Bella runs and oh,
how my Garret runs with her
Papa holds the leash
but nothing holds my little Prince's
laughter and joy
And his peals are
music to our ears
They say the best things in life
are free,
Yes, I totally agree
Now I understand and truly, truly
comprehend
On this rainy, rainy day,
My Little Prince
has taught me
One magnificent lesson
Once again...:-)

Sunday, August 14, 2011

Normal

Normal. An adjective. Denoting conformity to the standards, rules, culture, and norms of society.

Will our children ever be able to live "normal" lives?, this question was asked during our first Autism Awareness Campaign. It was a valid question. It was a question that forced us to confront the realities of Autism--our reality. It was a question that made us pause on our tracks, draw a sharp breath and finally give an answer that somehow satisfies the person asking and us who were supposed to answer.

What answer did we finally give? Let me first define what is normal for us: Normal is relative to the meaning we give to it. These define "normal" for us:

*When Garret is able to wake up in the morning with a smile on his face welcoming the sunshine with an equally bright mood that follows the rest of the day, this is normal for us.

*When he is willing to take a bath without argument, finish his bathing time without a violent reaction, brush his teeth, dress himself up without incident, this is normal for us.

* When, on the drive to school, he does not scream or slap when we are about to make that turn on the block he so dislikes, this is normal for us.

* When he is able to carry his backpack and walk on his own without first asking to be carried on the way to his classroom, this is normal for us.

* When he is able to go through his two-hour sped class without whining or complaining, and comes out from his class, smiling, this is normal for us.

* When we go home and he finishes his lunch without so much as a morsel of rice wasted, this is normal for us.

* When he complies when told to get ready for afternoon nap, this is normal for us.

* When in the late afternoon and he is bored, he finds ways to occupy himself and not bothers us with incessant whining, this is normal for us.

*When we go for our afternoon joy rides, he happily sits and watches the world go by before his very eyes and again, does not complain when we make turns he does not like, this is normal for us.

*When we arrive home, and get ready for dinner, he eats readily without spitting the food out because he does not like the taste or texture of how the rice was cooked, this is normal for us.

*When we finally get ready for bed and turn the lights off, and he does not scream because he still wants to play with his spring, and he climbs into bed as requested, this is normal for us.

* When we finally close our eyes, and he hums his song of the night, the stars and spiders, until he falls fast asleep, this is normal for us.

Now remember all that I just enumerated on what is "normal" for us. Now, change "normal" to "miraculous". Read all the things above and change normal to miraculous....What defines Normal for the rest of the community, what is normal for the rest of the world is miraculous for us, for our children and our families. So aren't we all the more blessed because our days are filled with miracles, albeit small, step-by-step, milestones achieved? I do not want to be pretentious and hypocritical and say parents and families living with Autism are more fortunate. Our day-to-day reality certainly tells quite the opposite. It seems as if we are always on our toes, we are always on alert-- on hyper-drive that often times we forget to take care of ourselves as our lives are bent on fulfilling the needs of these little people that we have borne into this world. Nevertheless, we are GREATLY and CONSTANTLY blessed-- with Grace, Hope, Faith, Perseverance and an ever-enduring love, if only to name a few of the countless blessings.

The answer I finally gave during that campaign was," I do not know what the future holds for our son. I ask the question myself, when the time comes when Andro and I will pass, what will become of Garret? Will he be able to lead a normal life? I do not know. We are living it just one day at a time because the uncertainty of the future overwhelms us." It was the most honest answer I can give. I'm sure it didn't answer anything but it was honest no less. My life partner finally took the microphone and said, " When your last name and the last name of the child you are rearing are the same and it is both associated with the word, Autism, your life will never be normal." Everybody in the room was silenced. He further said, "For Garret not to be a burden to society in the future, is our goal. For him to contribute positively and not adversely to society is our quest. And this, will define 'NORMAL' for us."

Right now, I am getting Garret and Morgan's bag ready for school. I make sure that in their backpacks are:

1. A change of clothes

2. Water bottle

3. Their favorite sugarless or sugar-free biscuits

4. A pack of wipes

5. Alcohol or hand sanitizer

There are no books or pencil cases, notebooks and writing pads like other normal kids. (Of course, these are provided in the Sped Center). These are what my two boys need. Their "INDEPENDENCE" pack, I call it. Garret doesn't need books to teach him geometry or plants or the correct grammar. He has the whole world right before his very eyes to teach him that. All he knows and cares is that the slippers and shoes in our shoe rack are positioned with symmetry, and that nature is a kaleidoscope of beautiful, wonderful colors that is given to him to revel in every single day.

In the end, come to think of it, what use will be medals and certificates and degrees if a person cannot be independent, self-reliant and responsible for his own actions and most importantly,have a greater appreciation of life as it is?

Another audience member remarked that these children with Autism are so lucky because they don't have problems to solve, like the rest of the world has, anyway. I beg to disagree. They do have one big problem to solve, and that is-- to live in a world filled with NORMAL human beings who have difficulty understanding them. To communicate their needs, their wants to the rest of the NORMAL human beings. And the rest of us NORMAL human beings who are gifted with a much higher cognitive functioning to cope with the complexities of life, are given the ultimate task to SIMPLIFY and make the world of these children bearable, livable and to make our world a place that will make them thrive not just survive. It is my responsibility and I take it with all my heart to make this community, this world a safe and beautiful place to live in for GARRET. and for MORGAN.

This is our advocacy. This is our fight. This is our battle cry. Whatever the outcome is, whether people still choose to discriminate, judge or simply be indifferent to Autism, they NEED to know. They need to be aware.

We may be living in a not-so-normal life. Our children may not be "normal' in the eyes of the world. But who wants to be normal when it is synonymous with the words-- commonplace, average, run-of-the-mill, routine, unexceptional? What is the purpose of life when we do not strive to be better than who we already are? What use are we if we choose to be unexceptional and common and NORMAL? We all have innate abnormalities, exceptionalities, if there is ever such a word. Uniqueness, simply stated. It just so happens that our children with Autism-- our Garret, my Little Prince has more "unique" traits that are definitely more peculiar and distinct. Now, with all the joy in my heart, I know now that our Children with Autism are brought into this world to remind us how loved we are by the Universe to have been created in the image and likeness of God and not in the image and likeness of any normal being. To remind us how we are truly, truly blessed not because we are normal but because we are given DIFFERENT and UNIQUE traits, personalities, talents, abilities, coping strategies. And maybe, just maybe, we have preoccupied ourselves with being NORMAL disregarding and being unappreciative, not nurturing our own special gifts.

Will our children be able to live a "normal" life? I throw back the question to all of you. Think hard. Reflect as we parents of children with Autism do everyday. What is your answer? What is normal? All I know is, we may not have a normal life. But in the end, when all is said and done, we wouldn't exchange our ab-normal lives for a normal one.

Wednesday, August 10, 2011

My Miracle

My most precious
Kicking and gurgling and groping
Inside the safe comfort of my womb
Shall you come out smiling?
Or with wails that break walls?
Among the things I chose,
I chose you...
My most precious
I cannot wait to hold
your delicate fingers with my own
To kiss your forehead soft
and hold you in my arms
The miracle of life
My miracle
You are my renewal
My new found strength
I love you
I am blessed
because of you
You have given me life
as I, yours
For now,
Rest well, my treasure
In the days to come
I shall wait with patience
for your entrance
and when that day
finally comes,
My world shall be complete.



Written 3 months before January 16, 2008, when our Feisty King, Morgan made his entrance into the world. And yes, he came out screaming his lungs out proclaiming to the entire O.R., to his doctors, nurses and to the entire universe he had arrived. :-)

My Little Prince is Born

Glistening stars of day
Dawns on my imagination
Bluest of blue painted on
Wispy whites
Rosy pink cheeks with
The soulful eyes
Heavenly scent on
my tired senses
Trickles of salty mist
Down my cheeks
As I cradle you in my arms
Heart overwhelmed with
the purest of joy
As pure and as beautiful
as you...

Written a few weeks after March 30, 2005--the day My Little Prince was born.

Thursday, August 4, 2011

Chosen

Circumstances unfurl
like a a map of the world
spread out on a sparse of wood
Places to go
Adventures to explore
And yet, where do we even begin?
Our life has been
that of one great journey
of pure discovery
of our true selves
the length we are
wiling to go to
the road we are willing
to take
the sacrifices we have
chosen to make
And the depth of
our love we claim to have
tested beyond human
capabilities
And then we were blessed
with the greatest gifts
Garret, our Little Prince
Morgan, our Feisty King
Now, our "unmei"- our destiny
is as clear as an overflowing spring
Our purpose, our road map
is right before our very eyes
Our boys are our calling
To love them
with a love that endures
beyond time, beyond space
to love them with a love
that goes beyond loving

We were chosen,
not because we are able
We are chosen
because simply
this is who we are.
To understand such theory
is as incomprehensible as
the answer to
why the universe was made
But to accept it as it is
is the greatest choice
we could ever take.
So now once again
We look at the map of the world
with fresh new eyes
with renewed strength
with ever-enduring love
for our two beautiful
amazing boys.
They are our destination,
They are our journey
They are our life
And what a wonderful, beautiful,
amazing adventure we will have!

Tuesday, August 2, 2011

Two Lessons Autism Taught Me Today

Garret and I arrived at school this morning at 9:40 a.m. When he was already settled in his classroom, I plopped down on my desk and breathed deeply. I was so exhausted I just wanted to sit and do nothing. But it was a different kind of exhaustion, the one that felt good and bad at the same time. Let me explain.

It began with me waking Garret up at 8:30 a.m. since his class was at 9:30. I had to use one of my tricks so he would really get up. I turned on his favorite cartoon and almost immediately he opened his eyes with his hands covering both his ears as he usually does when he does not like the dialogue or music played on t.v. When he was finally fully awake, and enjoying his cartoon show, I had to pull him out of his enjoyment and convince him to take a bath. He whined and cried. I had to carry him to the bathroom. And when he was already enjoying his bath, playing with the water--his one favorite thing in the world, I had to tell him, "Bath time is almost finished, Garret. Time to dry and wear clothes. Because it's time to go to school." I had to barge in his time of joy and bring him back to reality. On the way to school he just cried and wanted to be cuddled. He couldn't understand why he had to stop all the things he liked doing. I comforted him all the way, "It's okay, Garret. We'll just play with the water later. We'll just watch Disney later. It's okay."

Transitions. Changes. Abrupt ones are especially hard for him. He needs a longer amount of time than most kids to process the information, understand it and finally make peace with it--another thing that Autism does to our children. Exhausting for us who are used to having a tight schedule especially on a workday. However, I reflect and realize how our priorities have been rearranged in a much better order than ever before. In a way, it has taught me and our family to slow down, take time and put things in proper order. No need to rush. There is a greater need to put things in place. We are, I wouldn't like to say "force" , but, given the opportunity to have more time to reflect on our thoughts and the decisions we are about to make. When Garret refuses to step out of the bathroom and chooses to play with water. I sit down and face the walls of the bathroom and I am able to breathe deeply. And for five to 10 sometimes 15 minutes, I am able to let go and just be... Still, silent, waiting. Waiting for time. Waiting for Garret taking his time. I am now appreciating the art of just being. With all the anxiety and worry about the future, once again, my son's Autism is teaching me to just be still. Garret is teaching me to wait. And in that stillness and waiting, God speaks to me...while Garret splish-splashes in his little pool of water.

As we were nearing the school, I asked the driver to drive around for a little bit to give my little prince some time to calm down. He was mumbling his self-soothing hums while wrapped in my arms. Never mind if we would be late for a little bit. It was the least I could do after I incessantly burst his bubble this morning. And so when we finally arrived, I still carried him all the way to the room, defying all notions of independence of letting him walk on his own like a big boy. It was my own way of making it all alright for him. For how could I explain the ways of the world governed by constant change and transitions for him? The "it's okay" line sometimes cannot suffice. Even our children need a better explanation than those two words. They deserve better than, "That's life. Change happens." Garret deserves a better explanation than that. These are the times that I want to shout to the world, "Why?!" And these are the times that I don't have an explanation myself. And I can only wrap my arms around my little prince and cradle him giving him some form of safety, security and constancy despite the transitions he has to make, every single day.

The irony of the insights of what transpired today is tremendous. Waiting, silence, stillness on one hand. And on the other hand, a Constant state of flux, abrupt changes and transitions that force us to act on our feet, right away, regardless of preparation or just enough time to adjust and adapt to change. Garret is showing us the way of letting go and just being. And I have to teach him and help him cope with a whirlwind of transitions.

Two lessons Autism gave me today:

1. I need to learn how to wait, to be still, to just be.

2. I need to be creative and stretch that extra mile to help and make Garret learn adapt to change.

Nobody ever said it would be easy. It will be exhausting. Exhausting in a good way because it means I am exerting all my muscles and emotions for my son. And bad because my heart breaks every single time Garret cries, not understanding the things he has to learn.

But it is going to be okay. As long as I keep learning, and as long as I keep making the lessons come to life, everything will be okay.