My 4 year old son was diagnosed with autism spectrum disorder when he was 2 years old. In the 2 years since diagnosis we have experienced the ups and downs of this unpredictable disorder. We have celebrated moments of pure joy. We have grieved loss. We have been angry and sad and excited and joyful and anxious and every emotion in between. We are at the mercy of something that we cannot control.
Describing Grayson’s autism is like describing the wind.
There are times when he is calm and steady. His presence is known but not felt in a way that is either too much or too little. In those moments he moves throughout our life spreading his infectious joy. He finds excitement in things that others barely notice. An airplane in the sky. A water tower in the distance. The color green. Something shaped like a planet. A familiar song.
There are times when he is a welcomed relief to the heat and the pressure of the world around us. I disappear into those big brown eyes and dive into his world. His laughter is the purest form of happiness that I have ever experienced. He asks me in his silly voice to give him “kissles”, his very own combination of kisses and tickles. He cracks a joke and laughs louder than anyone in the room. He reminds us in those moments to just breathe. In that moment, everything is ok.
There are times when he is is too rough, too fast. Too much. He is unsettled. He moves and shakes everything around him. He comes in without warning and changes the moment. And after he has gone we are different. We are changed and tossed about. It is hard to remember where we were before he changed us. And because we cannot remember, we start fresh from our new place.
Autism is like the wind.
The volatile and angry moments of Grayson’s autism are the hardest moments. They are moments that live only in our heads and in our hearts. So often the people standing the closest to us do now know about the moments we are enduring at home. We protect other people from those moments. And, we protect ourselves too. Because living those moments at home is one thing, but saying it out loud makes them real in a way that is just too painful.
The physical side of Grayson’s anger is unpredictable. A moment can be peaceful and calm and in one instant it changes direction. We see the anger spread throughout his body. Before we even know what has happened he is tense and yelling and red and filled with anger. He slams the door to his bedroom with so much force that the door jam is broken and separated. When he slams other doors in the house he knocks pictures from the walls. He picks up vases and pictures and toys and slams them to the ground. He makes sure to make eye contact with you before he does it. He hits and kicks and pushes. He throws things. Hard. 6 months ago he threw a cup so forcefully at our TV that he shattered it. And he did it again yesterday.
In these moments there is little we can do to help him calm down. The anger needs to run its course. Our only goal is to get Grayson in a space where he can be alone. To keep him safe, and to keep other people safe. This boy who is so sweet and so loving and so wonderfully joyful has absolutely no control over his body in these moments. When I look into his eyes I can see that he is not in control. I can see my sweet boy inside fighting to get out. To take control of the moment. To regain control of himself. In that moment, our sweet boy is lost.
Sometimes it takes 2 minutes. Sometimes it takes an hour. Sometimes it takes a day. We help Grayson take deep breaths. We give him space. He calls this his “break”. Sometimes he asks for the break on his own, and sometimes we have to insist. In time, the moment passes. And we all sit amongst the shattered pieces. Are there physical things that are broken? Yes. But, the shattered pieces that are the most difficult to clean up are the pieces of our hearts.
I know that there is no easy fix. I know that we must continue to do the work; at home, at school, and in therapy. I know that I must put on a brave face and continue to show my son love. To endure all of the pieces of this diagnosis, even the shattered ones.
As we head into a time of year filled with thankfulness, joy, and peace on earth; I have just one request of you. Be good to each other. Remember that what we see is such small piece of what is really happening. Show love to people, even people who are hard to love. And forgive. Forgive people. Not because you have to, but because you want to. Just be good to each other. It is really that simple.
It is truly only with the love, support, and understanding of friends and family that we are able to pick up the pieces and move forward.