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.