“You really are lucky” I hear the words, over and over. I believe them too, knowing full well that this could be worse. Most days, I am thankful. I repeat the words to myself. I remind myself of the fact that I am, indeed, lucky. Lucky because while autism is a big part of our lives -there are no aversions to food. Lucky because while autism is present -for the most part, we live our lives mostly uninterrupted. We have our routines and schedules -but things change. Life happens. We don’t always go with the flow -but for the most part, the bumps we hit are small.
We are lucky. Really. I get it. That for all autism is in our lives -we can handle it.
I say all this because there are days that arise when I don’t feel lucky. Days when I have to go to school and collect a child who decided that he didn’t want to go to school. Days when I have to bring him home, and watch, helplessly as he battles it out. Days when I wish he could just tell me what was wrong -was it too much unscheduled mayhem? Was it too sunny? Was he too hot? Did someone hurt him? Scare him? Did he have a bad dream? Is he confused? Frustrated? Why? So many questions -and no answers.
I try reminding myself of the good stretch of road we have been down lately -the transitions he has made, the huge accomplishments in his life, the major milestones he has passed. The countless days where he hasn’t been upset, or scared, or hurt, or angry -or whatever else…
Because days like today -man, they hurt.
Days when all you can do is buckle up and hang on -because you know it’s going to be a long ride -and you don’t know when it will end. Days when the plans you had go out the window and you clear your schedule and count the seconds in the minutes and try to remember to breath. Days when you try so very hard to remember that this boy -the one here, right now -is not the boy that left for school this morning. That he will return. Even though you don’t know when. Days when you try not to let the negative voices take over -and fail, because when you are down -they kick you. Hard.
I try to hold onto those words. I lock myself in the bathroom -listening to the screams coming from the bedroom. I echo the words to myself “You are so lucky” in hopes that they stick. But they don’t. Because no words can touch the reality that we are existing in. Nothing feels lucky about this very moment -the moment that when nothing matters. I can’t help him slay the demons that are attacking his mind, I can’t determine if he is suffering about the size of his pants or the harsh words whispered to him at lunch -and really, it doesn’t matter. It is all so difficult, so harsh, so hard.
He thrashes in his room, kicking the walls and pulling his hair. He yells some, but mostly just quietly organizes his thoughts -the thoughts that have come unraveled and cause unneeded chaos in his mind. The thoughts that no one but he knows.
…and just as quickly as it comes, it ends. 7 hours and some odd minutes later -he returns. His hair a disheveled mess, a scratch above his left eye and a few bruises on his arm. His eyes are tired and heavy, he looks defeated. He cries at the drop of a hat and goes to bed an hour early after rejecting dinner. I look in on him, the aftermath of the day weighing heavy on my heart, the negatives in the world taking over and I whisper to no one in particular – “We are lucky.”
Because we are.
We are so, so lucky.
Tomorrow we will get up, he will work through his routines and go to school as if nothing happened. It will take me longer to recover -recover from the negative thoughts that flooded my mind and the aftermath that comes from trying to process the day. But we will make it another day.
We are lucky. So, so lucky.