The words swirl in my head looking for a place to land. Somewhere to set up camp, somewhere to plant themselves. Somewhere they can grow. Grow into thoughts and ideas, solutions, and problems. Somewhere they can start to make sense. I brush them aside, swat them away like they are angry flies and not words that one day will hopefully form sentences that will make sense to me.
When Josh was fist diagnosed with austim I bought every book I could get my hands on. I searched the internet into the late hours. I looked for ideas, solutions and yes, even cures. I read every bit of information I could daring it to make sense…then one day, I tossed all the books into a drawer and never looked back. My reasoning was simple: No one had the answers I was looking for. There are no two cases that are the same, and since nothing was fitting -why was I going to waste my time looking for answers in a book when clearly the answers were right in front of me.
Its been a battle. A struggle. A constant fight. Trying to understand, figure out, sort, and determine everything that goes into raising a non-verbal child with autism. People often ask how I know what he wants, how I know what he needs, what he likes, what he doesn’t like, and the question has always stumped me. How would I not know? Perhaps it is the intuition that is both a curse and a reward all in one, perhaps it is the connection of being so close and living with someone for so long, or perhaps it is just that he makes his wants known. He makes his likes and dislikes clear. Whatever it is -he is a pretty easy child to understand.
I have been holding back on saying a bunch of stuff that so badly wants to come out yet stay in at the same time. I have been keeping my thoughts to myself for multiple reasons -but the main being that I don’t want something I say to hurt someone I love. One day if they are to stumble on these words -I don’t want them thinking that I thought less of them. It’s a tricky balance, because so much of their stories are not mine anymore…yet their stories intertwine with mine, making them, somehow, partially mine.
Monday, after a long weekend of empty thoughts I met with the team working together to try and make sense of a somewhat complicated 16 year old. It has been nearly seven months now -and various medications, treatments, therapy and counseling has failed. Mere days from sending him to live with his grandparents -he attempted something that raised red flags and thwarted all plans -yet again. It seemed somewhat hopeless, and quite frankly empty. Like there would never be an end to all this. Like there simply was no outcome that was going to be remotely close to what I was hoping for…
Then Monday happened.
A few words were tossed around, and a diagnosis. For the first time in seven months. While I would have liked to hear the words “He’s fine. He’s coming home. He’s decided against following through with threats that have been made the past seven months.” While I would have loved nothing more than a solid promise that the future is going to be ok -they handed me a wobbly idea of what they think is going on. A diagnosis that if treated properly, and handled correctly -I’m told can result in a somewhat normal life.
While its great to finally have a word to place on the problem and hopefully with that magic word there will be some magical way of bringing the kid I know back out again -the diagnosis day is always a bit haunting to me. Sitting across the table from well respected people hearing that once again, you aren’t going to be winning any awards for the normal family. That your life will always be haunted by diagnosis’s, medications, therapy, and hopefully -if you and the members of your house beat all odds -you might have a shot a broken future.
It wasn’t what I hoped for. It never is. The things I hope for are so much a thing of the past that I don’t even remember them clearly. I long for the word normal. Regardless of how sketchy the definition for it may be -I want some of it. I want to fight with the kids about normal things. Things like staying out too late, getting speeding tickets, and bringing home the wrong girls. I realize it sounds shallow. I realize it sounds stupid. I realize that I should be grateful that this diagnosis is not one that is terminal. At least in a short sense.
…and I will take it. I will accept it. I don’t hold anything against it. I might not understand what the words are, swirling around in my head looking for a landing spot…maybe one day I will make sense of them. But until then, I will take the diagnosis that has been applied to a seemingly innocent 16 year old child, and run with it -if it means one day, having him (the real him) back.