Following the Storm

Yesterday I sat watching Oliver in the waiting room of our pediatrician office and I'm sure my face fairly shone with the pride I felt. Oliver, my beautiful, sweet Oliver was moving from place to place, interested, exploring everything. There were only two other people in the waiting room, a mother and her teenage daughter, and they were fully engrossed in conversation, not paying a bit of attention to how exquisite my boy was for those moments. I even laughed out loud when Oliver played with his reflection in the fun house mirror. And I thought to myself: "This boy is really going to be OK." He is so easy these days. I can take him anywhere and I never have a problem with him. And if that mother and daughter had been paying attention to Oliver would they have sensed that something about him was different? Would they see the little things that I was so sensitive to that set him apart from other four year olds? That noise that he made when making his way across the room? The way he occasionally stopped and bit the back of a chair? The way he kept moving his hand across the reflective surface of the mirror?

So perhaps it was it was because I was feeling so smug that I didn't pick up on the clues that might have warned me that trouble was ahead when the nurse finally called Oliver's name. Instead, I noted with pride that he looked right at her when he heard his name called out. I asked him to give me his hand so I could lead him from the waiting room and he came but then immediately yanked his hand from mine and retreated to a toy at the far corner. I went to him, lowered myself to his level and asked him to come with me, which he did. But as soon as we were in the examination room it became apparent that Oliver was full of anxiety about being there. He began to wail and scream and flop to the ground. When I tried to pull him onto my lap so that I could comfort him he arched his back and became dead weight on the ground. I tried to be soothing and calm. I got on the floor next to him but I could feel my own heart racing. When we moved out to be weighed and measured he did calm down momentarily but then flopped and screamed again as soon as he stepped off the scale. I occupied myself with trying to talk to him, to get him to come with me, to soothe him somehow but I could see a group of shoes out of the corner of my eye. People standing there, staring at us, somehow making everything worse.

When we were finally able to move back into the exam room, the nurse returned and began to ask me questions about his eating, his activities, etc. Then she launched into a series of questions and I was so pre-occupied with how upset Oliver was that I didn't realize immediately that she was asking me questions from a developmental milestone chart!! After two or three questions I finally turned to her and calmly said that I didn't think it was appropriate to ask those questions and that I didn't want to answer any more. She apologized and looked at Oliver and said, almost to no one: "It must be so hard." I wanted to smack her.

We have been seeing a nurse practitioner rather than a doctor for all of our health care needs because we have found one who is sympathetic, pragmatic, caring and optimistic -- exactly the right combination. But we had to wait for her for what seemed an interminable amount of time. And when she finally did enter all she wanted to do was ask questions about Oliver and his therapies, which, under other circumstances I would have been happy to talk about. But as it was I could not concentrate on anything more than my son and so I told her that we had better get on with it. I just wanted to get out of there because by that time I had also lost control, was holding tightly to Oliver and both of us were crying into a puddle on the floor.

I always get angry when I hear autism spoken of as a "devastating" disorder. Autism is not devastating to me because my son has autism and he, my beloved Oliver, is what has brought the most meaning to my life. But sometimes there are bumps in the road that are difficult and everyday we are challenged to give Oliver the tools he needs to cope, to learn and to grow. One of the most difficult things about autism -- to witness, to live through, to talk about, to write about -- is when a parent watches their child injure himself on purpose. When I see Oliver become so agitated, so driven to the extremes of frustration that he bites himself hard enough to leave teeth marks and bruises, and when I, his mother, am so incapable of helping him. ... well, that is hard. So when I first had to restrain Oliver from biting me and then watched as he tried to turn on himself I knew I had not paid enough attention to what he was trying to tell me.

As soon a we left the building, Oliver was fine. I re-adjusted the rearview mirror in the car so that I could keep a constant watch on him as I drove. Only his red, splotchy face hinted of the storm that had just passed. That night, after Oliver had fallen asleep and I had gone over the events with Nik I retreated to the bathroom that I am in the never-ending process of painting. As I quietly worked I went over and over the events, trying to see where to lay the blame. Our last visit to the pediatrician office had gone smoothly enough. Oliver has never reacted so vehemently about being in any other space. Was it the fluorescent lights? Was there a smell I didn't detect? Was he expecting to go to another examination room?

One thing I know for sure about yesterday: I failed Oliver. He was communicating something to me as loudly as he could and I didn't listen. I don't know exactly what he was trying to say but I do know that next time I will retreat with him when he needs more time and space. I will hold his hand in mine and only move forward when he is ready. Damn the expectations of others.