Each day, I have a deeper understanding of just how little I really know about my son’s autism.
I am not talking about symptoms and treatment options. I know those things. Those things are easy to learn. I can read them in a textbook or talk about them with a doctor.
But there other things that I do not know. Other things that I will never know.
I will never know how it feels for my son to experience life with autism. I cannot hear sounds the way he hears them. I cannot see color and light the way he sees them. I cannot experience touch and feelings the way he feels them. I cannot interpret words and phrases the ways he interprets them.
I live in a constant state of wonder. I wonder about my son’s world. What does it look like? Sound like? Feel like?
When I close my eyes I try to imagine his world. In his world I know that everything has a place and a purpose. There are no senseless rules. No social guidelines. No need for unnecessary words and sounds. No extra fuss.
I want to imagine his world as a simple place. Quiet. Happy. Peaceful. But, I cannot see it that way. Because my son does not live inside of his world in a bubble. He lives inside of his world, inside of our world. And that is anything but simple.
Each day my son sorts through all of the pieces; pieces of his world and pieces of our world. He learns the ways that they are different. And, the ways that they are the same. He learns each of the pieces inside and out. And then he tries to put them together.
Together, but never really whole.
Because there are pieces from his world that do not work in our world. And there are pieces of our world that do not work in his world.
I see this play out every day as he lives his world inside of our world.
Something as ordinary as getting a haircut is anything but ordinary for my son. He does not like anything about it. The sound. The touch. The lack of control. Getting his haircut causes a physical reaction. His body tenses. He sobs real tears. He winces in fear in anticipation of each cut. He fights every snip. He loses the ability to take deep breathes and calm down. We cut his hair 10 seconds at a time. We cut the hair away from his eyes and out of his ears. We cut until we cannot endure anymore. And then we stop. We hold him in our arms. We help him calm down. Often he is angry with us. He wants to hit us and push us a way. And we understand that. So we give him the space he needs.
Getting a haircut is just a normal part of our world. But is does not work in his world. In his world it is terrifying. In his world the sensation of hair touching his skin is painful in a way that I cannot understand. I only know the pain and the fear because I watch him experience it. But I have not idea what it really feels like. It is another reminder that I will never really know how he feels things.
And just as he struggles with the activities of our world; he struggles with the words in our world too.
He cannot understand our rules. At school he is told that he cannot go into the girl’s bathroom because the girl’s bathroom is for girls only. But in our everyday life outside of the school he comes into the girl’s bathroom with me all the time. He cannot understand the contradiction. His black and white world cannot process the “exceptions” to the rule. The rule does not make any sense to him. And who is going to follow a rule that they cannot understand? So he runs. He makes a game of going into the girl’s bathroom. He is laughing, but he is not laughing at our expense. He is laughing at our rule. Because our rule does not make sense to him, and he thinks we are pretty funny to have such a stupid rule.
But rules are a part of our world. And even though our rules do not make sense in his world; he must learn to live by them. And so we will teach him to live by them.
I am here. I am sitting right next to him. I am holding his hand. I am rubbing his back. I am squeezing him tightly. I am rocking him in bed. I am singing softly to comfort him. I am backing away. I am giving him space. I am observing his actions. I am protecting him. I am protecting others from him. I am listening to his words. I am helping him to find the words he cannot find on his own. I am explaining things that do not make sense to him. Things that do not always make sense to me.
I am here beside him, but that will never be enough. I will never know all I want to know about my beautiful boy and his beautiful world.
I will never experience life the way my son does. And he will never experience life the way I do. And here we are. Beside each other. Two people from two different worlds learning to live together. Together, but never really complete.