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..."
Monday, August 29, 2011
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...:-)
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.
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.
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