Some Days are Just Not Good Ones

Today was a better day than yesterday.

Yesterday was just one of those days where frustration, confusion, anger and the urgent need to establish a sense of order were all mixed in a bowl. How else would you explain to your child that what he was enjoying so much watching-- two kids playing badminton, has ended because they are tired or just need to do something else? How do you explain to your child who understands only his excitement and joy at seeing the ball bounce back and forth from two rackets that the game is finished and that it is okay that it ended? How do you tell them it is okay in a way that gets through to him, in the most rational way his autistic mind can understand? And after all this, how do you stop yourself from engaging in self-blame or in immersion in the sea of questions that ask only why? why? why can he not understand? Why can't his brain allow him to understand? And then, how do you help him cope with all this when the hitting, slapping, kicking and screaming has started? Then the bigger question, as the parent, the adult, and supposedly the more mature and more able one, how do you deal with all this? How do you cope with all this? How do you deal with the tantrum without breaking down yourself?

There are tons of literature that teach us autism parents how to handle situations like this. Literature. Sure, they do help. Planned ignoring, Giving time-outs, Negative reinforcements, Punishments and a whole lot of other strategies. But the literature does not tell you answers to your questions of "why my son?". The literature does not teach you how to hold your emotions in when your own child has his heart in his sleeve, open for all the world to see, very vulnerable to the pain of a frequently changing environment. The literature does not understand the utter frustration of how you feel you have done everything you could to love your child and how all the more Autism tests the limits of your patience and tolerance and even your proclamation of acceptance and understanding of your child.

Oh, and what's worse? The people around you are quick to place judgments on you. Very quick. And you are tempted to shout back, "Just try for even just one day or even a minute to be in my shoes!" But then you know better and you hold your tongue because you know they will never ever know what it is like to be in your place. Because even if they were in an alternate universe be in your shoes, they will not survive for even a second. But the most painful part is when you are confronted with the question, "Why does it seem that your son does not like you and seem to even detest you?" How do you react? You just fall silent. Even if you know that it is not true, you begin to question what you did wrong when you were carrying him in your womb, what you did wrong along the way, or what you did not do to perhaps prevent all this from happening-- autism and all its eccentricities.

Then you realize, what other people say or think do not really matter because at the end of the day, it is not them who live the reality every single day of your life. It is not them who has to deal with the tantrums and manipulative behavior and sensory overload. It is not them who wakes up at 2 in the morning because your child cannot sleep and cries and whines until 5 in the morning. It is not them who has to establish a consistent routine and an orderly environment in the home so your son's world will be a happy place for him to live in. It is not them who sends your child to sped class, therapy and doctor's visits. It is not them who gets to experience all the ugliness that Autism brings to your life. Their quick and very poor judgments of your parenting skills DO NOT matter because they do not live your life.

What's that saying again? If someone throws a rock at you, get a piece of bread and throw it back at them....a hundred pieces of Pan Elorde ( the three-days old kind of bread). So here's one for all of you out there who are mindless, insensitive jurors of seemingly incompetent parents:

What you say or think do not really matter because it is not you who gets to see how my child reaches out for my hand in the car and intertwines his fingers with mine for no reason at all than to just feel my hand.

It is not you who gets to experience every single day the most beautiful smile on his face he reserves just for me when he likes something that I wear or how I cut my hair.

It is not you who gets to hear him sing a sweet, sweet lullaby just for me so I can go to sleep in the afternoons.

It is not you who gets to hear his contagious laughter and overwhelming delight as he plays with their adorable dobe.

It is not you who gets to hear him play twinkle twinkle little star on the keyboard as he learned it all by himself.

It is not you who gets to see him dance in perfect rhythm to the music of Black-eyed peas.

It is not you who gets to have the sweetest kiss on the lips when you ask him to.

It is not you who gets to hold him at night and hear his peaceful breathing as he goes to a restful slumber that makes you simply want to be thankful to the universe for being alive.

So, really, what you say and think do not really matter. Because you don't get to experience all the beauty and gratitude that Autism brings to my life.

I just read, " Our mission in this life is not to fix people. Our mission is to be a good demonstration of the glory of the universe so that others may shine and grow because of our presence."

As much as I am hurt and pissed off, I choose to be a source of light and growth for you. Think all you want. Say all you want. Judge all you want. We all carry different crosses. Your judgments may be a result of your own crosses burdening you. So I give you that. But I want you to know, we are all trying to make it in this life, we are all trying to map out our own paths, the paths of which our children may step upon, including yours. Being a source of light and growth though does not mean though that I would just take your judgments sitting down and clamming up. No I won't. So here's my final piece of bread to throw at you:


The next time you see a parent of a special child struggling to calm or discipline his or her child and you feel the urge to form those rash conclusions in your mind, how about saying this prayer instead?

"Grant that I may never criticize my neighbor until I have walked a mile in his moccasins."