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.

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. 

Pieces

Pieces

Pieces, blocks
Zoob things.
Cars. Rubber ducks.
Cards. Pictures.
Alphabet. Numbers.
Grouped color by color
Or by height and size.
Placed in just the
Right position
And looking at them in
A sideways glance
Or staring at them
With an enthusiastic
Excited hand flap
Reveling and lingering
in his happy
Peaceful place
Until it comes
Without warning
Because of a mere
change of the direction
Of the wind
Or sound of the first drops
Of rain
Never mind the thunder
Resonating in the sky
But mind the roar
Of that heart
That tells
Here it comes.
Brace yourself.
And in a split
Second before
I can,
They all come
flying off--
Blocks. Zoob things.
Cars. Rubber ducks.
Cards. Pictures.
Alphabet. Numbers.
Chairs.
Then some, Tables.
Tears. Shrieks.
Kicks. Slaps.
Pinches,
Then some, Punches

Glares
Of why do I
do this?
And the last to
fly off are the
Pieces.
My heart.
Crumbling
Piece by piece
Falling down
On the colored
Rubber mats
Pick it up.
Pick it all up
As calmly
As I could
I ask him.
Blocks. Zoob things.
Cars. Rubber ducks.
Cards. Pictures.
Alphabet. Numbers.
Chairs.
And in tears
Hands curled
In a tight
Fist.
He did.
Piece by piece
My, Little, Prince
Mama, loves, you.
He sits down
Quiet.
His eyes searching
And searching
For answers
Or for me
Maybe.
Both our throats
voiceless dry.
I have no
answers
But this--
Every piece
of my heart.

Autism Proof

I never thought the day would come when I would be explaining to my son why I spanked him. But it did. And for me, for us in our family, this is another milestone achieved. It's not so much as me explaining to him why I had to do it as it is he understanding my explanation. As in really understanding the events that led me to him spanking him. And perhaps truly understanding the most important reason of all.



Garret is 8 years old. He has single words now here and there. A-koo (Apple), Ana-na (Banana), Graesh (Grapes), Fish, Skweh (Square) among those that are more or less consistent, clear and unmistakable. Two word-phrases still elude him though. Conversations, all the more. But I haven't lost hope. If there's one thing I still believe, it is that one day, my little prince and I will be talking under the sun, the moon and the stars non-stop. One day. And I could just imagine the things we would talk about. Or maybe I will just gape in wonder at him when the time comes and he will be doing all the talking.

Language is expressive and receptive. There can be no true language without both. Expressive language obviously can be measured by how much a child speaks and how he speaks, uses the words, etc. Receptive language, on the other hand can be partly measured by how much a child expresses himself. And this is where the discrepancy happens, I believe. Because so much of what a child understands does not necessarily translate into verbal responses. After all we have what we call "choices". Even at a very young age, children begin to practice making choices, choosing what to answer. Yes or No. Cake or Ice Cream. Blue or Red. Behave or misbehave. And it seems, as they grow older, mental mapping, reflection, pondering, processing any input from the environment all the more contribute to the quantity and quality of verbal responses and behavior, of course. I would love to cite a reference for this paragraph but I think I do not need to because these few sentences are products of what we all experience. Common sense, you may call it, don't you think?

So back to the point of this blog post. Two nights ago, I spanked Garret. Our newly-cropped ears Dobe, Riley was trying to play with him, licking him as he went out of the room,which Garret does not like. So he pinched the ear of Riley. I called his attention once. Still he did not heed my reprimand. He pinched Riley's ear again. This time I swatted his bottom with one firm smack. He looked at me, went to our room and hid under his pillows. His papa called to him. He refused to approach his father. He sobbed quietly, looking at me like it was my fault he was crying, which of course was understandable. It went on like this for 10 minutes or so until I couldn't take it anymore and approached him. He was lying face down. I did the same beside him and put my arm around his back. I stroked his hair and said, "Garret, I spanked you because you did not listen to mama. Riley's ears will get hurt if you pinch it. And I have to spank you because you have to learn to listen to what mama says." Or something like that. I tried to make my words really simple and easy to understand. He looked at me, tears in his eyes. I continued, "Mama spanked you because Mama loves you." At this, I left him alone to process everything I said. After three minutes or so, he stood up and joined Morgan jumping on the bed, smiling slowly as if nothing happened. And that was when it struck me, as in really struck me-- Garret understood me. Really understood what I just said. In his own non-verbal way. Actions do speak louder than words ever will. He understood more than any two-word phrases and sentences could ever measure. But more than anything, I was amazed at the thought that what I said got through to him. Somehow beneath the seemingly sound-proof walls that autism builds around the world of my son, my words were autism-proof. I connected with my son on a different level, and he connected with me. And that meant everything. Because just when I was up to my neck with self-doubt and on the brink of losing my patience and perhaps some parts of my faith all together, a breakthrough like this happens.

So what have I learned from this? Three things: One, language is more than just spoken words. More importantly, it is seen, clearly seen in what is not said. What I say, what I do, my little prince is taking it all in. As Morgan does. They understand everything that goes on around them in their own way perhaps even in a more hypersensitive manner. They may have autism but they may be more in tune with life than I am. So this is a note to self in my other aspects in life as well. I have to be more sensitive to body language, facial expressions, subtle nuances that people I interact with, communicate with me. Sometimes, words only serve to cover what is the truth.

Two, even if I begin to lose hope and question if any of what I'm doing as a parent is ever working, even if I forget the one true thing that gets my boys through, the one powerful force that nothing could ever surpass, the Universe does not forget and somebody up there is just taking it all in as well. And when the time is right, he / she tells me, shows me in his own verbal and nonverbal way as well, like saying, "I did not forget. And here it is, what you need. I may have had to postpone some miracles so you would learn the value of patience, discernment, reflection and gratitude always. And I did this for no other reason than because I love you." Well, what do you know, my stubbornness and know-it-all attitude is also given a firm smack on the bottom.

And three to wrap it all up in one tidy neat bow: Love, what I have for my boys, what the Universe has for me unconditionally, is autism proof always. :)