Friday, January 23, 2015

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.

Saturday, January 3, 2015

The Way I Love You, My Boys

Garret asks to be kissed many times before going to sleep. It is his nightly ritual. Whether it is his papa or me who sleeps beside him, it seems he has this quota of kisses to reach before he is able to sleep. My arm or his papa's has to be placed across his body in a half embrace. It takes a while until he seems content before he falls fast asleep.

Rituals or "stims" we call them, are ways children across the spectrum make to bring some sense into their world, to create order in their universe. It is repetitive behavior often viewed as unusual, awkward and distinctive.

For a time when Morgan was still 4 years old, he would always have his six toy sharks and straws with him. When he wakes up after a nap, the sharks and straws better be in his plain view. Otherwise something similar to chaos would break loose. The tantrums would come and there would be no consoling him.

At present his bedtime ritual is wanting to be hugged in the tightest way possible like an infant, all of  at least 20 kilos of him on my chest until he falls into a deep slumber.

The rigidity to routine, fixations on certain rituals and objects do become more manageable in time as parents learn how to deal with it as with the rest of the symptoms: impairment in social communication, social interaction and social imagination. One crucial thing is to acknowledge that these behaviors are an integral part of who they are. To know that these are not something to be eliminated because to eliminate it would be to take away a part of who they are. I guess what I am trying to say here is that acceptance is an all-or-nothing deal. This is not to say that it is easy. Not in the least.  Garret was diagnosed 6 years ago. Morgan 3 years ago. Even today, I find myself still working at acceptance especially during the not so good days. To come full circle in embracing our children in all their beauty especially the hard parts is a place every parent have to journey to every single day.

Only then can things get better, more manageable.  And eventually one realizes, things didn't get better.  Autism is still there. If any, the challenges even become harder. You, as a parent got better. Better at accepting, better at loving. You have become a better person over time. 

In so many ways my boys will always remain my babies. Their needs are simple. Perhaps they will never be like other neurotypical kids who will grow up to have their careers and families of their own. But their hearts will always remain honest and pure. I have no doubt that society will always view them as unusual and different. The road to autism awareness and acceptance is clearly a long arduous one.  If parents ourselves struggle with awareness and acceptance, what can we expect from the other members in the community? But I have faith. We are getting there. The community is learning. Society is learning.
My boys' needs are simple, basic, elemental, pure. They just want to be loved the way the Universe created them to be. They just want to be nurtured and cared for in such a way that they can be free to reach their highest potential, be who the Universe wants them to be. 

So should the way I love them be--  honest, pure, visceral. A way that says, "I love you, no matter what." Come to think of it, shouldn't all loves be like that?

Come bedtime tonight and the night after tonight and the next and the next, I will kiss my little prince for as many times as he wants me to. I will hug my feisty king as tightly as he wants for as long as he wants. I will wrap them in an embrace that I believe can tell them in a language only he and Morgan understand, that speaks only one true thing, "I love you my boys, no matter what."