Sunday, September 26, 2010

Looking for Alex

When I come home each day after my job as a part-time teacher, Ed, who stays home with Alex every morning because he teaches afternoon and evening college classes, gives me a summary of how the morning went. Ed tells me what Alex ate for breakfast, how he did on his home school lessons, when he took his vitamin supplements, and what interesting things he did. Most importantly, Ed shares with me his impression of Alex’s mood for the day. During the turbulent adolescent years, Alex’s mood often determined how the day would go for all of us. If he was good natured, we could basically relax and enjoy the day, but if he was agitated, we had to proceed with caution around him, so as not to set off a meltdown. Fortunately, the past several months, Ed has been able to report to me consistently every day that Alex is in a very good mood and that his behavior has been excellent, which makes all of us happy. The other day, Ed threw a twist into his morning report by telling me that he had a brief scare that day. For me, “scare” was a bad choice of words as my heart began beating rapidly with a scare of my own and my mind rushing to figure out what terrible thing could have happened while I was at work. As I implored Ed to “cut to the chase,” he explained that he thought Alex was in his bedroom, but he couldn’t find him anywhere as he searched the house twice looking for him. Somewhere along the line, we learned that calling for Alex was a waste of time because children with autism often don’t respond when their names are called. I discovered years ago that a better way to get Alex to come to me is to yell, “Hey, Alex, do you want to go to Walmart?” This would bring him running to me because he is always ready to go for a ride to Walmart. Anyway, on a third search of the house, Ed found Alex sitting on the floor of our home office reading a book, hidden from sight of the doorway by a chair.

While many children with autism have a habit of wandering, we have been fortunate that Alex has never shown a desire to try to get out of the house. Terrible stories of children with autism emerge where frantic parents have searched for hours because their children could climb out windows, manipulate any types of locks put on doors, and wander away from home. Sadly, some children have drowned as they went into pools or ponds but could not get out of the water. Along with God’s watching over him, Alex has always seemed to have a healthy dose of fear that has prevented him from getting into dangerous situations. In addition, he doesn’t like heights, so he has never climbed up to get something or someplace. This was an advantage when he was little because I could put things on top of the refrigerator or in high cabinets (which required that I got a stool to retrieve them, but at least I knew he couldn’t reach them) and know Alex would not try to get them. In addition, his poor fine motor skills made child locks—or any locks for that matter— and childproof lids impossible for him. We were blessed that we really didn’t need to worry about Alex getting into things he shouldn’t or getting away from us. Nonetheless, we never completely trusted him, so we always kept a close watch upon him, our doors locked, childproof locks on areas we didn’t want him to be, things high out of reach, and our rear car door child locks engaged. In fact, I told Ed the other day—after I had been sitting in the back seat of our car and couldn’t open the door because of the child locks—that we could now take that safety feature off our cars because we can trust that Alex will not open the car doors while we are driving.

Even though Alex has never given us real reason to worry that he will wander, my fears about something happening to my child, who for many years had limited verbal skills and didn’t always respond to his name, have haunted my dreams. Once or twice a year, I go on a sleepwalking jaunt through the house. Although I only have vague recollections of these incidents, my mom and Ed, who have witnessed my behavior during these rare occasions, find them interesting, if not a little unnerving. Somehow I can successfully navigate a flight of stairs until I find someone I can tell my urgent message that has partially awakened me from a deep sleep. Wandering to the basement family room, where Ed is up late reading, I have been able to tell him my constant concern: I’m looking for Alex. Once Ed assures me that Alex is safely in his bed sleeping peacefully, I can return to my bed and sleep peacefully, as well. Since I have nightmares that I’m frantically looking for Alex, often a younger version of him, I’m sure that’s what sets off my occasional nighttime wandering. I have come to believe that looking for Alex has really become the focus of my life. Even though Alex is physically present, I have been searching for the boy behind the cloud of autism, the soul I know is in there. One of my favorite lines from the movie Rain Man about autistic savant Raymond Babbitt comes from his frustrated brother Charlie, who says, “You know what I think? I think this autism is a bunch of s*** because you can’t tell me that you’re not in there somewhere!” I have often felt that same exasperation, knowing that Alex is somewhere behind the hand flapping, the phrases repeated over and over, the meltdowns, and any other behaviors that make him different from other children. With every therapy and with each step of progress Alex has made, I feel thankful as we get closer to who the real Alex is. Until he overcomes every obstacle autism has presented, however, I keep looking for Alex.

“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.” Matthew 7:7

1 comment:

Mom said...

Pam, this is another beautifully written essay. However, as tall as Alex is now, I'm surprised that he would be that easy to overlook if one looked into a room he was occupying. It reminds me of the time when you were about eighteen months old, and I was looking for you in our (then) very small house. I called and called your name, but you didn't answer. I finally found you sitting behind a chair in the living room, preparing to eat a spider. Funny how history repeats itself. At least Alex was reading a book. The picture that you've posted with this blog is one of my favorites of you and Alex.