DEFCON stands for Defense Condition and it’s a numeric system from 1-5 to indicate the level of threats against the United States, 5 being things are pretty calm and relatively safe (no threat) with 1 being (grab your ankles and kiss your butt good-bye).
As I was raising my two typical children, I realized my old level of relaxation (DEFCON 5) was never to be seen again. My heightened state of alert stayed with me night and day, regardless of whether I was with my children or not. At any given moment, someone could spike a fever, need stitches, or break an arm. I needed to be ready at all times to respond to an emergency. As they grew, there were times of DEFCON 3 when something was bothering them and they wouldn’t talk about it, DEFCON 2 when someone got wood chips in his eye from a high-powered squirt gun or chemically over-treated her hair and it broke off at the roots. We’ve even had times of being at DEFCON 1, the most horrible summer of my life. Luckily, everyone survived and eventually, the alert level hovered back down around DEFCON 4.
But unbeknownst to me, there was a higher level alert system, even above DEFCON. It was AUTCON. AUTCON in our home identifies the Autistic Condition levels. For Sam, I still have the typical worries about fevers, stitches, or broken bones but add to that the concerns autism brings, and you’ve entered a whole new level of alert. They’ve done studies that indicate that Autism Moms have stress similar to combat soldiers. I know this to be true. There have been times in our lives when things seem to be under control, but at no time are things okay. There’s the constant worry over his current physical health which at the moment encompasses the ever-present constipation battle, his seizures that are not controlled, his migraine headaches, his OCD picking of his finger and toenails until they bleed and get infected, and his nutritional deficiencies. These constant worries keep me at AUTCON 4 when they are under control and spike to AUTCON 2 when they are not. Sam’s behavior has, at times, taken us to AUTCON 1. The summer of 2012 saw him kick out three windshields on our vehicles. One of those times, I was alone with him at Lake Erie. He was upset because McDonald’s wasn’t serving lunch yet. I exited the vehicle to fill the tank and heard it happen. I knew before I looked what he had done. Being a holiday weekend, I couldn’t get a glass company to fix it, so we clear-taped it together and prayed all the way home. We were at AUTCON 1. There’s the worries over his education, his recreation, his socialization. I worry about his dental health and his hygiene. I worry about finding funding to cover the things he needs. I worry about his future.
I have friends who have medically-fragile children. They battle life-threatening seizures and conditions that cause their children to sleep for days on end and turn blue. They have children with cancer and children who need multiple surgeries. For these families, there has to be a level system even higher than AUTCON. It’s cliche’ to say that I don’t know how they do it, but I don’t. And I hope I never find out.
All I know is, I am not alone. There are millions of families living in the AUTCON zone. Some at AUTCON 1 as we speak. But I see my friends who now have grown typical children that are re-discovering life in DEFCON 4. Like I said, parents can never ever go back to DEFCON 5 again but DEFCON 4 looks pretty darn good. Unfortunately, I doubt I’ll ever get out of AUTCON and back into DEFCON at all. Just as I can’t comprehend what it’s like to live with a medically-fragile child, my friends will never fully comprehend what it’s like living with autism. How could they? How could I expect them to?
I don’t need people to understand what it’s like. I don’t even want them to do anything. Our comfort zone is being home with him and watching a movie after he falls asleep. I need to be close so I can monitor him. But I would like something from the outside world. Some slack. We are often isolated, even close relatives not understanding our walk in life, and sometimes Facebook is a place to vent. Some of us vent a bit more than others. Sometimes the things I share aren’t pleasant or pretty. And I really don’t even want a response. I’m simply venting. For those who say Facebook is for sharing cute kitty pics and encouraging memes, I’m happy you’re living in DEFCON 4 where everything in your world is rosy. Block me, unfriend me, I don’t care. I’m in AUTCON hell and I can’t get out. Don’t give me advice, just cut me some slack.