My fifteen year old son, JT, ran cross-country last year as a freshman. He fared well for his first year. He wasn't the fastest runner but he medaled in each race. His last race was his best in which 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. It took training, sweat, a lot of pain and most of all heart before that medal, even if it wasn't first place, was won.
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 this change in our home . My other three children get the attention from me they need. Everyone in our home is safe. And most importantly, Marcus is safe. So yes, his move has been good for the family and for him but we all have gone through lots of training, pain, and sweat. And most of all, the strength of our hearts has been tested.
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 is 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 was over, my other three kids were milling around the house. Marcus was doing his usual pacing, and flipping of a sock, (his favorite "stim"). I sat on the couch in my small living room watching him pace. It happened just like that, without warning. He started screaming at the top of his lungs like someone had stabbed him. His 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 couldn't. He screamed and this time, he ran across the room and crashed into the wall. My fiance was in the room by this time, and he 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 banging the sides of his head with his balled fists with all his might. This is when my fiance and I grabbed him and forced him to the floor on his back to protect him from serious injury. He screamed again. I remember looking into his eyes and seeing the helpless, vacant glare he had. I kept asking, "What's wrong sweetie, what's wrong!" I wanted to fix that stare and stop his screams that were so desperate, and his movements, so unabated in their force.
This scene would repeat itself many times over the next three years. As Marcus grew, his strength increased. The fits became increasingly more difficult to control. It also marked the genesis of a heart wrenching ride into prescription medications. Risperdal and clonidine were Marcus' only medications up to that point. But they seemed to have lost their effectiveness, especially with the onset of Marcus' fits. 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 was the unforseen 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. Right now he is quite content, after a few hours with the family, to go back to his small family home. So we are taking it slow. There is no conclusion to this blog because Marcus' story is ongoing but I will say that for now we feel like we 've won a medal, maybe not first place, (what's that? - to be healed of Autism?) but certainly a medal that sees Marcus and the rest of our family safe and healthy.
No comments:
Post a Comment