Next month is Autism Awareness Month. I have thought long and hard about how I can bring awareness to autism and shine light on these amazing kids and adults that see things a little differently. Ok…a lot differently. I want to tell everyone that will listen about my bright, beautiful, funny eight year old that loves presidents and history and dates. I want to show you the unbelievable things his brain can do and how he basically sat down at a set of drums for the first time and played like nobody’s business. But the truth is, there is an ugly side to autism. A side that, at my very core, I hate.
Tonight, my son yells, “Is something wrong with me?? I feel like I’m different from everyone else. I feel like ya’ll are trying to have an important conversation with me sometimes and I don’t know what’s going on. I get in trouble a lot and, most of the time, I don’t even know why. I don’t want to be different!”
My heart was broken. The tears fell as I looked for comforting words. The mama bear in me wanted to fix it. I go to hug him and he pulls away. “Can you let go of me? Why are you crying? Let me go!” Hugging is not his thing. No matter how many times I say that out loud, it doesn’t change the fact that I want to hug my son or the fact that he hates it. I’ve got nothing. I can’t hold him or tell him that it will get better. The reality is, it will not.
Being an autism mom is a lonely road. Since autism is not a facial expression, my son looks “normal”. Actually, he is super cute and charming and has a smile that lights up his whole face. I feel guilty for complaining since my autistic child can talk and communicate and do truly extraordinary things. I feel guilty for complaining when I know others have it so much worse. The comparison game is a killer. Truth be told, no matter how charmed my life is, my child is hurting. His brain that is such a blessing has also become a curse. His ability to see his differences also makes him feel less than. He sees the world like a magic mirror maze that distorts his perception. He is horrified that no one else sees it. No one else can get him out and there is no way to go in with him. I have assured him that his daddy and I are in it for the long haul. That we will work with him and help him navigate his scary, parallel universe. He starts crying and asks a question that I have lost sleep over many times. “But what happens when ya’ll die? What if I can’t drive a car? What if I can’t have my own house? What will I do??”
In nursing school, I had an instructor ask if it would be better to lose control of your mind, or your body. Losing your mind sounds horrible. However, after 10 years of psych nursing, I have met several pleasantly psychotic people. They may be crazy as Gary Busey on acid but they are happy in their own little world. But losing control of your body would be a torture I’d rather not face either. My son is completely capable of driving a car, living alone, having a job. His life will always look different than I had envisioned but I am thankful he is capable. The part that devastates me is that he is a prisoner to his mind. He’s trapped in the magic mirrors. Sometimes he panics and feels claustrophobic and lonely because he just wants the fog to clear. I am beyond proud of him. He is the bravest boy I know. Not because he’s not scared, but because he has to deal with a strange, scary world alone, and lost. Even though I am, and always will be, right beside him.