Friday, January 27, 2012

The Most Beautiful Music

It was lunchtime for my two boys. "Garret, come.", I called to him. He is happily engrossed playing with his bottle of body oil and he does not come to me. I call out to him again this time changing the intonation and pronunciation, "Gar-reet, come". He looks my way and comes to me. I am amused and told him, "Do you like the sound of "Gar-reet" better, kuya?" I get no response of course as he returns to his bottle of oil happily stimming.

"Does he come when called? Does he respond when you call out his name?" These are two of the the first questions a developmental pediatrician or therapist asks when parents have their child evaluated. At this point, the parent senses that sinking feeling at the pit of her stomach and realizes for the first time that come to think of it, her child does not come when called and when is called by his name, does not respond. Automatically she answers, " Well, when he is so focused on his toys or cartoons..." The parent does not bother to finish her sentence because she knows better. Deep down in her gut, she knows that something is wrong, was wrong the first few times she calls out the name of her child and he does not respond. And it is not because he can't hear. The doctors' questions only prove her gut instinct right. There is no going back now. And it is finally time to face the truth.

I know this all too well. From personal experience and from the parents I encounter at the center. I wish I could fully comfort the mothers who come knowing I've been through what they are going through. I wish I could assure them that when the questions come it is where the hardest part is but just like everything else in life, once the hardest part is over-- facing the problem, confronting the truth, then freedom begins, and the load will be not easier but at least less heavier to carry.I hope it gets through them. I hope they are consoled and comforted somewhat. I tell them, the progress of your children won't come overnight. It happens one day at a time. Just as acceptance does. Everything is a process. It requires so much courage to face the truth. And it requires even more audacity to embrace it.

Name calling. Remember how ecstatic you were when your baby first recognized his or her name? You realize, " My child knows his own name. He knows he is Juan, or Pedro. What a beautiful thing!"

By now, you must know that for us autism parents, it's a whole different story. Our kids need to be guided, physically guided and taught to recognize their names. The Sped teachers and therapists at the beginning of the class or therapy sing, "Where is Garret? Where is Morgan?, there you are, there you are...", complete with the hand gesture tapping my child's chest...Eventually the teachers no longer sing but call out simply, where is Garret? Where is Morgan?. And eventually, they tap their chests by themselves signifying that they are present.

I don't remember exactly when Garret started to consistently respond when his name was called, but I remember vividly the first time he clearly acknowledged when I called him. I think it was in the middle of his first year of therapy. I arrived from work and he was sitting on the sofa of our family room watching his favorite cartoons. I entered the house through the kitchen and when I saw a glimpse of him in the family room, I called out, "Hi Garret!". He turned to look at me and didn't break his gaze for several seconds. It was heavenly. At that point, it was my turn to be ecstatic. " Garret finally knows his name! "

The reason why name calling is one of the many first things that is given focus in therapy or in sped class is because when a child is able to turn when called, it means he is ready for the next step, which is focusing on a given task. Of course tasks start simple, simple instructions--"Garret close the door, Garret, pick up the ball." which will then move on to much more complex tasks which the environment, the world inevitably offers and constantly bombards everyday.

No one will ever really know what goes on in the world of autism. The sensory overload that most likely causes them not to respond to their name being called is one of them. Why their brains are wired differently is a mystery. The world outside their safe cocoons is just too much for them to handle. But the hard truth is that the world does not adapt to their eccentricities and needs, it is the other way around. This is where the challenge rises. This is why we have to teach our children the very basic, practical things in life in order for them to survive, starting with responding appropriately when their name is called. To respond to one's own name is elemental to survival. This much we have learned not to take for granted.

Ever since Garret was diagnosed and we went through the whole process of confronting the reality and finally acting on an intervention for him, every single day has been a day of celebration for us. The little achievements our little Prince makes are everything to us. The day he turned to me when I called his name was the beginning of a greater appreciation of the simpler more basic things in life.

It has been said that the most beautiful music to one's ears is the sound of his name.

Garret's name comes from Germanic origins which mean "strength of a spear" or "strong and brave". I don't know if he will ever understand the meaning of his name but clearly, he exudes strength and courage. My little prince is strong and brave every single day as he strives to live in a world that has the least understanding for his own world, as he strives to learn in his own way, as he seeks for his joy in the smallest things despite the chaos his brain creates. Garret may not be able to say to me, "Mama I feel so good when you call my name." But when I call out his name, it is definitely the most beautiful music to my ears. Because I am reminded how strong and brave he is. More importantly, it encourages me how strong and brave I need to be as his mother every single day. What music could be more beautiful than the sound of my child's name resounding strength and courage? And what experience could be more beautiful than my little Prince responding to his beautiful, beautiful name?

My little Prince Garret, how strong and brave and beautiful you are! Today and everyday, I celebrate your strength, courage and beauty. Once again, thank you Autism for bringing out Garret's strength,courage and beauty. Thank you for teaching me how to see it with the clearest heart. And thank you for bringing out the best of me as a mother.

For all the other mothers and fathers out there just starting the process of facing all of Autism, just hang in there. Don't give up. Hang on to hope. Believe. Miracles happen. Miracles are right before your eyes, your children are your miracles. Soon, they will hear the most beautiful music to their ears. And soon you will hear the beautiful music that Autism teaches too.

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