A Moment of Perfection

I sing, "The wheels on the bus go..."
Garret sings, "wownd and wownd
I sing, "Round and round"
He sings, "all through the town"
"The wipers on the bus..."
"Go wees wees wees"
"Swish swish swish"...
"All through the town..."

In another moment, Morgan cups my face in his hands, stares at me eyes twinkling, grinning, laughing. No words are said. Only embraces that become tighter the more he laughs his heart out. Until he catches his breath from our roughhousing.

This is how Garret and I converse. This is how we connect.  We sing.

This is how Morgan and I talk. This is how we connect. We embrace and play.

And when we do, it doesn't matter that we are repeating age old nursery rhymes and playing with no specific purpose in mind than just to sing and play. It may seem repetitive, boring, nonsensical, childish to others. But for me it is the most beautiful thing in the world. Because in those few precious moments, my little prince and feisty king are in my arms, looking at me intently, happy. And in those moments, we are connecting to each other through our own language. In those moments I know in my heart they know the love I have for them. In those precious, merciful moments, our world is perfect.

Isn't this all we really want in this life? Isn't this all we need in life?  To connect with somebody? With our dearest friends? To know we are not alone in our journeys no matter how different our baggage may be? With our life partner? To go through life with each other as anchors when the turbulent seas of life become rough. To be each others sails and be one others wind at the same time so we may become who we are meant to be. With our children? To know their deepest fears and aspirations, to let them know how we love them so much that they wouldn't even know what to do with the love we have for them?

Converse, discuss, dialogue, talk to each other about everything. Have a good conversation. The simple ones. Even the hard ones. Especially the hard ones. Face each other. Be vulnerable enough to show who you truly are. Be brave enough to see people as they really are. Laugh hard. Weep, if you must. Be angry if you should be. Don't turn in. Open your heart, arms outstretch, palms facing the skies. You may not get hurt with closed palms but  you can't catch all the miracles the Universe has intended for you either.

So go ahead, look to the people around you. Converse. Connect. Sing if you want. Hold a friend's hand if that is what is needed right now. I'm hoping you might have a piece of what I experience with my beautiful boys-- A moment of perfection. Every single day.

The Little Things

"Enjoy the little things, for one day you may look back and realize they were the big things. "
- Robert Brault.

Special needs parents know this too well. We live this quote every single day of our lives. We not only enjoy the "little things". We celebrate them. So here I am celebrating another "little thing". 

Lately Garret  has been naming his toys like this:

He picks up a toy, (star, hippo, airplane, etc.) brings it to me and says, "star" and does not stop until I stop what I'm doing and repeat after him.  With toys that he has difficulty naming, he does this:

He picks up 'octopus', brings it to me and says, "fa-yer" (flower). I say, "No Garret, Octopus." He says, "Fayer" again. And then says, "uh-tu-tu".

For hippo, he says, "doggy".

For airplane, he says "car". 

I wondered what made him name his toys this way. And then it came upon me that when you do look at the octopus, it does look like a flower with its tentacles spread all around. Come to think of it, the hippopotamus has four legs and some dogs do look like hippos. His toy airplane has wheels. Cars have wheels. Of course, it's a car. I could almost hear his voice say, "Duh, Mama."

How many victories to count in this story? Commenting. Imagination. Comparison.  Deduction? Where do I even begin?

Garret was diagnosed with Autism Spectrum Disorder on April 5, 2008.  In November 2011, Morgan, our youngest son was diagnosed with ASD as well. For the past six years, various challenges presented themselves to us, to say the least. But while the obstacles are many,  the blessings and milestones reached by my boys and myself are more numerous in our journey. Garret and Morgan have taught me more than I could ever teach them in this life. Courage, resilience, gratitude and a deeper appreciation of all the "small" things. 

As my boys have progressed  in countless ways, I have found the courage to find the light in every situation rather than dwell in the parts that Autism casts its shadow upon. It gets better. It really does. With the support and dedication of the "village" that raises my two boys--the teachers, therapists, family, friends near and even from other parts of the world, I realize how incredibly blessed my boys are, how blessed I am. And so with utmost gratitude and awe at the "little" things that my boys achieve, I do not hesitate to announce it to the entire world. Because we couldn't have come this far by ourselves. Perhaps, too,  the celebration of our "little" victories would inspire others who are in a similar journey to always keep doing the good work, keep fighting the good fight. 

With his charming eyes that just twinkle when he smiles, I have long ago decided to call Garret my little prince. Just like Antoine de Saint-Exupery's Little Prince, he teaches me to always look with my heart. Even when the dark days come, especially when the dark days come, it is only right to look at the world with the heart. And to grasp the purest joy I can find inside and to always choose the light. To choose to see and celebrate the milestones and not focus on the setbacks. To decide to marvel at how far we have come rather than furrow our brows at how far we still have to go. To appreciate the present rather than worry excessively about the uncertain future. 

I may call him our 'Little' prince but his courage to face the world everyday is great and the "little" milestones he reaches are nothing short of amazing. And I celebrate him and Morgan, our feisty king, every single day.

Why I call Morgan, our "Feisty King"? That will be for another post. Soon. 

“And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye.”
― Antoine de Saint-Exupéry, The Little Prince

 

In the Right Direction

This morning as Garret was lining up with his classmates outside the classroom, getting ready for their 10 am class, one of his classmates remarked to him, "Hoy, dako!" I was nearby when I heard it and my chest immediately tightened. I inhaled deeply before telling the kid as calmly as I could, "His name is not 'Dako'. His name is Garret."

"Dako" in our vernacular means big.

Garret attends Kinder 1 classes. He is 9 years old. His classmates are 5-6 year-olds. Obviously he is physically taller and bigger than his classmates. But this is where his level of cognition and social skills roughly are. So we decided to place him in the level where he is most adaptive, and can relatively cope with the lessons and simply put, happy.

At this age it might be safe to say that these kids have no concept of discrimination yet. Yet. This is why at this very age, it is important to veer their perception of "differences" to the right direction before the discrimination escalates into plain bullying.

The kid's remark, "Dako" to my son clearly proves how he acknowledged that Garret was different, being bigger than the rest of them. I wonder with this acknowledgement, how much of it he understands or interprets as being, good, not good, acceptable, okay, not okay. Of course, it is not his fault if he perceives the being "big" as something not good because what he sees most of the time may be according to society's so-called "norm". The norm here being, his classmates in K1 should be of the same height or physical build. And who knows what else he considers the "norm" as he is taught at home and in other places.  I do hope though that he perceives "dako" as interesting, to begin with.

My mama bear instinct shot up upon hearing that kid's remark. Even though I was aware at the time that it may be my own interpretation of how the kid perceived his own words, I still felt compelled to defend my son and in the process educate his classmate.

What happened today may be my cue that it is the right time to talk to the entire class about their "big" classmate. If I'm lucky enough, their young minds may still be in the level where they indeed see something different as interesting. Where they see "not like them" as something to be curious and to learn more about.

Having said all that, what then could be the right direction where we could steer the ships of these youngsters' perception? Or for the rest of the population who are not young anymore but are in need of a change in perception?

Perhaps we could start with acknowledging the different. Acknowledging means not ignoring. How many of us have been taught that it's rude to stare at people? What happens instead of staring? We ignore people, don't look at them in the eye especially the ones who are "different". It's like the elephant in the room. Everybody knows it's there but nobody wants to acknowledge it. Now, what does that achieve? Nothing really, except awkwardness and discomfort. As an autism parent, I have had my fare share of stares in public places whenever I bring my boys to the grocery. What do I do? I look at them in the eye and smile at them. They have no choice but to smile back. Whether it was out of embarrassment that I caught them staring or whether they understood our predicament, I don't know. All I know is a smile is one way of breaking the "rudeness". It gives us autism parents a feeling of communal understanding, an assurance that even if our kids are having a meltdown at the mall, nobody is judging us or our kids. And especially during those times where we really don't have the strength anymore to smile at anybody, when a stranger shows us a kind, understanding face, it takes a fraction of a load off our shoulders. On this note, however let me say that there is a huge difference between acknowledgement and judgment. I think this is self-explanatory.

After acknowledging what is different then maybe we could move on to knowing more about the different.

Ignorance is not always bliss. It hurts our kids. It hurts the autism parents, the family members of the kid with autism. What is strange scares us. What is unknown brings anxiety. And the only way to eradicate fear and ignorance is to confront it. Google it, Autism, Down Syndrome, Global Developmental Delay, Cerebral Palsy, Mental Delay and all else. If you don't have internet connection, which I highly doubt, ask a pediatrician. Or ask us, ask the parents. Don't worry we won't bite. We would appreciate it even if you ask about our kids. Kindly, of course. But we will bite those who make snide, purposeful, ignorant remarks about our kids and our lives.

With knowledge comes a shift in paradigm. In perception. In beliefs. Which we hope will open the way to acceptance. If not acceptance, then tolerance to begin with. The shift in paradigm that we hope people will have when they know more about what our kids' disabilities are is the realization that all human beings are indeed created different. And that different is okay. Different is not something to be feared. Different is not something to be chiseled into the "norm". Different is the source where we voraciously learn from each other.

The ultimate direction that we hope people can arrive at, that kids can arrive at is celebration. A Celebration of the Different. To not only acknowledge, know and accept our children. But more importantly to marvel at their individual differences. Their own individual differences. That even we members of the neurotypical / normal race are remarkably different. To give value to all the quirks and various physical, cognitive and social facets of our children. Verbal or non-verbal. Restless or behaved. Short in height or tall. Small or Big.

Autism parents, special needs parents celebrate every milestone. There are no little achievements. Little is not in our vocabulary. Because we know the value of every single thing our children work hard for and accomplish every single day. Therefore we shout to the world their successes. We pause in our tracks and thank the heavens for the very persons our children are. We celebrate them. Every part of who they are.

What if parents of normal kids out there realize the value of even the minutest detail of their own children's efforts for striving and not just the first honor medals and valedictorian certificates? What if parents of neurotypical kids celebrate the kindness of their children and not just the 100 of every subject in their report cards? What if they celebrate their children who don't fit into the "old school" system, who learn through the arts and sports? What if parents celebrate how their children are able to learn life skills as simple as doing house chores willfully, cleaning up after their own messes, running errands efficiently not just how they read a thousand pages of Algebra and Calculus books? When that happens, then that will be the real celebration. That will be the real essence of the Celebration of the Different. 

"His name is not 'Dako'. His name is Garret." Garret's classmate looked at me silently seemingly afraid that I would reprimand him. I looked at his i.d. and said, "J, your classmate's name is Garret. Okay?" He still kept quiet. I offered him my palm for a high-five and smiled at him. He high-fived me, a smile slowly creeping into his face.

Come Monday next week, I'll be speaking to Garret's class and try the best way I can to steer them in the right direction of how they view the "different". How they see my big son. How they perceive Garret and his being different. Hopefully, they'll learn to accept that Big can be okay. That Big can be in fact, beautiful. And hopefully they will grow up and learn to celebrate the big, the different. 

An Angel's Smile

I had to write this post if only to capture and carve this beautiful memory of one little girl's smile forever in my heart and for all to see or imagine at the very least.

It was yesterday afternoon when it happened. The afternoon special ed class at our center ended. And the kids proceeded to go home with their caregivers hand in hand. The last of them was our one of our three girls at the center. Their driver had not arrived yet so they waited in the reception area. I was preoccupied with something, some papers and stuff for the new kids to be evaluated by our visiting neuro-developmental pediatrician, when I heard the little girl's caregiver say, "Ma'am, diri lang sa mi mag huwat ha." (Ma'am, we'll wait for our driver here, is that okay?). I mumbled a quick "Yes, of course" to them without even turning my head. A few minutes later, their driver arrived. I heard the caregiver say, "Ma'am, ari na mi." (Our driver has arrived. We are going home now.) This time I stopped with whatever I was doing and turned to look at them. And boy, was I glad I did. "Bye, Sweetie.", I called out to the little girl. Her caregiver made her turn towards me and said, " Say bye-bye to Ma'am Bea." No response. She just looked at me with questioning eyes. I said again, "Bye Sweetie." Pause. One, two, three seconds later, her questioning face broke into one big smile at me! Oh how my heart leaped! Her caregiver said happily, "Very good, Annie! (not her real name)." Little Annie held my gaze for more than 5 seconds still smiling, then continued to walk towards their vehicle assisted by her caregiver. Even when their van drove away, her smile remained in my vision. The joy I felt still beating loudly upon my chest.

Annie has Rett Syndrome, a rare form of autism that affects only girls. Its manifestation is the slowing of head growth, loss of muscle tone, loss of the use of hands, a stiffened gait in walking, uncoordinated breathing, loss of language and social skills and seizures(http://www.webmd.com/brain/autism/rett-syndrome)

This information serves not so that readers can have some sympathy for our little Annie or perhaps comment, "How difficult her life must be.", but so you can see beyond the challenges that lay before her, the challenges that she is going through every minute of her everyday, so you can see the unbelievable strength that this little girl has shown despite the odds against her. And not only her strength but also the strength, patience, resilience and unconditional love of her mother and father and other family members and the most wonderful caregivers that take great care of her every single day.

I know for a fact how her parents strive to work very hard just to keep up with everything that she needs. And I'm not only talking about the financial aspects. The emotional strength that is required for this kind of life circumstance is immeasurable. I know for deeply loved little Annie is by her parents. If I were asked to define what acceptance really is, I would answer you, " Look at them and how they love their little Annie. " They would do anything in their power to protect her, nurture her, give her the best possible quality of life, love her in every conceivable possible way. And I know for a fact how great their faith is in the Universe, that everything has a purpose, and that everything will be taken cared of.

I take my hat off to Little Annie's parents, family members and caregivers. Their love, strength, resilience and acceptance is so amazing, beyond words. So powerful. I am deeply humbled by who they are and what they do. Everyday without fail. It makes me realize once again, there is a much greater force in this world, much greater purpose in this life than that of fulfilling personal joys.

Most of all, I am moved beyond words, beyond tears, beyond anything by Little Annie. I am humbled by her very presence in our center, in our lives. It reminds me once more to be grateful for every single blessing that I have in my own life, in my two boys, in my life partner, in my family. Her most cherubic smile has reignited the fire within me to do everything I can in my own way to make this world a better one for her, for my boys and all the other kids with special needs.

So you see, I had to write this post. Not only so I cannot forget the memory of that angelic smile of little Annie, not only so you can imagine what her life must be, not only so you can see the immense strength in her, but so that I can give Little Annie the salutation and celebration that she and her family so well deserve.

I'm sure Annie's family do not seek praise or commendations for how they raise their child, or how much strength they bring out everyday. Nor does Annie. They just want to live their lives the best way they can, the best way they know how. Everything else is just icing on the cake. But I have to share this to the world for another more important reason, a deeper cause. Because this is my own way of telling the world, encouraging and empowering other families out there similar to Annie's or ours to keep going, never give up, keep on praying, be steadfast in hope and faith.

I end this post with a quote from a friend:

"It is such a relief that the greatness I thought myself to be deserving of is my son." -Pete Owens-

In the end, after all is said and done, after everything we've endured, in all the joys we are blessed with, there is one life truth that becomes clear: the salutation and celebration that we once thought we were deserving in this life is not ourselves, but our children. They are the reason we are here. They are our salutation. They are our greatness. And we are all the better for this amazing truth.


Thank you, Little Annie. From now on, every time I start to lose track of my path, every time the questions of why return, I will close my eyes remember how you smiled like an angel at me, how you broke through the walls of autism surrounding you, I will feel your strength and remember the strength of your family and know in my heart how my boys, my family and I will, in turn will break through.

Insights from Another Contintent

Some days are good and wonderful and some not so great. And then there are days where you meet people who let you see the world in a different light, allow you to reach deep within your soul and illuminate even the darkest corners of your mind. I am so blessed to have come across a fellow autism parent from another continent, a father who is undoubtedly and utterly devoted to his son. I have him to thank for the insights I gained for the past two weeks.

My boys, Garret and Morgan, are sent to save me from myself.

Mark Twain once said, "The two most important days in your life are: the day you are born and the day you find out why." In the most wondrous of days where miracles happen, when my two boys reach certain milestones at their own pace, my heart soars. When I see the joy in the faces of the other parents at the center because of their own children's milestones achieved, all the more joy. It is at this point that I reach my own milestone. There is that one clear, true thing that resonates within my soul-- I know now why I was born--So I can parent my two boys. To be a mother to Garret and Morgan is the greatest gift the Universe has given me. My purpose in this life is a gift from the universe. And the other reason is so that I can help other parents, families, children afflicted with autism. My boys are sent to save me from myself so I can serve a purpose greater than myself. So that I can be bigger than who I am. The universe has given me the greatest gift. And this gift is my salvation.

My two boys make our lives doubly blessed, double the strength, double the resilience, double the joy.

Everyone reaches a breaking point. I did three days ago. I went to the safest place I could find and wept. I asked all the unspeakable questions that you're not supposed to ask. And I allowed myself the mistake of self-blame and self-pity. I just had to let it out. Somehow detoxifying myself from all these negative thoughts. Purifying my soul somewhat. And two of the kindest people I know provided me a sense of comfort. They prayed for me right there and then, even cried with me. I cannot thank them enough. When I was relieved from all that ugly pain, I pulled myself together and with a newer, stronger resolve, I said, "Despite everything, I am still blessed." We are not given crosses we cannot carry, so they say. That is why I know with my two boys, I have been given double the strength, double the resilience, double the love, double the grace and double the joy.

"Having children of any kind is a privilege that not every adult gets to enjoy. It's our duty to those people to appreciate our children fully and never take the experience for granted." -Pete Owens-

No need for explanation, really, for this third insight. Life is really,really good to me. Thank you, life. Thank you, Pete Owens.

Lastly,

One of the great purposes of autism is so that we will never forget our shared humanity.

The Talmud says, the highest form of wisdom is kindness. We are but one in experiencing the complexities of life. We each carry our own burdens, we each have to climb our own mountains. Autism may have been brought to our lives so that we may know how to value people more, be less judgmental, be more accepting of each of our individual eccentricities and plain differences. As we rally on the advocacy of spreading autism awareness, we must not forget the basic premise of our earnest admonition-- kindness. We are pleading people to be kind to our children by having an open mind and open heart, be more accepting of them, be educated enough to help them the right way, and if they choose to be, they can be advocates themselves of our children and other children with special needs. We are but one humanity, regardless of race, nationality, country or continent. We draw strength from each other. We draw wisdom from each other. And that wisdom, of the highest form, is kindness.

This particular day, all I can say is that the Universe certainly knows what it is doing. Autism at the top of the list.