My fifteen year old son, JT, ran cross-country last year as a freshman. For a first year runner, he fared well. He wasn’t the fastest, but he medaled in each race. His last was his best– he came in tenth out of 150. He was always proud of his medals. He was proud because he learned early in the season that no medal came easy. To earn a medal took a lot of sweat, pain, and most of all, heart.
JT’s lesson definitely has its application in our life with my autistic son, Marcus. You see, since January of this year, Marcus has lived in a small family home. In so many ways, Jt’s medals symbolize our family’s experience with Marcus. The benefits of Marcus’ placement for my other three children are that they get attention from me that before was given to Marcus. Everyone in the family is now safe. Most importantly, Marcus is safe. But even though the move has been good for all of us, we have all gone through a training course of pain and sweat and heartache.
I have started a blog on Marcus so many times over the last several months. Invariably, each ends up as a draft in the margins of the page. It has been a grieving process to go against my belief system and my heart and deliver my son over to strangers so that they can care for and save him when I cannot. But several months have gone by and it’s time to share and tell more about Marcus and me because this is the promise I have made.
One Saturday afternoon in June when Marcus was ten, he had his first violent fit. We didn’t see it coming. My fiance and I sat on my couch in the living room of my small bungalow; my other three kids were milling around outside. Marcus paced the living room floor and flipped his sock in front of him, a familiar ritual since his toddler years. Between idle talk about work and the kids, my fiance and I both kept a side eye on Marcus. It happened just like that, without warning. He started screaming at the top of his lungs like someone had stabbed him. His first scream was loud and desperate. He began jumping with both feet hard on the floor. I jumped up and yelled ,”Marcus, stop!” He didn’t, and it seemed as if he couldn’t. He screamed again, and this time he ran across the room and crashed into the wall. My fiance yelled for him to stop. Marcus was about 75 lbs. at this time and about 57 inches tall. But he seemed to have mythical strength for a kid his age. For me, his aggression was more than frightening. He screamed again and this time began with all his might to bang the sides of his head with his balled fists. This is when my fiance and I grabbed him and forced him to the floor and onto his back to protect him from serious injury. His voice had become a loud gurgle. I remember seeing the vacant, helpless glare in his eyes. I kept asking, “What’s wrong sweetie, what’s wrong?!” I wanted to fix that stare and stop his desperate screams and movements, so unabated in their force.
This scene would repeat itself many times over the next three years. As Marcus grew, so did his physical strength. The fits became increasingly more difficult to control. This time also marked the genesis of a heart wrenching ride into prescription medications. Risperdal and clonidine were Marcus’ only medications up until the onset of the fits. But they seemed to have lost their effectiveness. Many doctor appointments where trial and error was the medical code of conduct never seemed to balance Marcus’ behavior for any significant amount of time. Worst of all were the unforeseen side-effects of the wrong medication or dose.
911 calls. Hospital visits. All night stays in emergency rooms is the short list of what ensued before our family got enough attention from the medical profession and our local agency to get permanent help for my son and for our family.
We see Marcus each weekend now. We are working up to overnight visits. These days, he is quite content to visit with the family for a few hours and then return to his small family home. So, we are taking it slow. Marcus’ story is ongoing, but I will say that for now we feel like we’ve won a medal, maybe not first place, but certainly a medal that sees Marcus and the rest of our family safe and healthy.