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.)