Autism by 1 footonthedawn(deviantart.com)
I remember vividly standing in the backyard of the parsonage in Blanchardville, Wisconsin the day we finally received my son’s diagnosis of PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) and yelling at God, “What more do you want from me, I’ve followed you to seminary, I’m trying to do what you tell me to do, what more do you want?” For those who are not as familiar with the landscape of the autistic spectrum this is one of the diagnoses within the spectrum that falls under the autism umbrella. That was ten years ago, my son was four at that point and my ex-wife were pouring our time and effort into my son and his newborn baby sister, trying to make ends meet and get him the therapy he needed while in seminary and on internship prior to my ordination in 2004. At that point in my life I was dealing with too many broken dreams to see the gift that Aren has become, but now ten years later I realize how much he has taught me about love, being human and in a strange way I have learned to see God in a different light through these experiences.
1. Broken dreams do not necessarily mean a broken relationship. As I stood there yelling at God, I was in the process of mourning a broken set of dreams and expectations for my son. We all have a set of expectations for our children, that in some ways they will follow in our footsteps and make us proud. Prior to going into the ministry I had graduated from the Corps of Cadets at Texas A&M and then served for four and a half years as an officer in the military. Aren was born while I was stationed at Ft. Polk, Louisiana and as a proud father I dreamed of one day seeing my son put on his senior boots at Texas A&M. It had been such a rich and formative opportunity for me at that stage in my life and I wanted the same for him, and that was one of the dreams that laid there on the floor shattered that day. I never stopped loving and caring for my son, even in the midst of his worst temper tantrums at that stage, or at the moments where I couldn’t understand how or why his speech wasn’t developing like most children’s speech just naturally did. Yet, somehow that dream for him had to die so that I could accept him where he was. Ten years later, as my son is on the threshold of entering high school, I am very proud of him for who he is. Even though he is incredibly smart and very well behaved and will probably do very well with his life there are still times where I watch his peers and grieve a little because there are things that I just can’t share with him because they are not important to him. Over the last ten years I have come to know more about Thomas the Tank Engine, Spongebob Squarepants, Fairly Odd Parents, Phineas and Ferb and countless other cartoons as he has recited to me entire episodes (which I have already seen anyways), I have become the subject matter expert on dinosaurs, sea creatures, space exploration, monsters and mythology and the latest video game on the Wii or DS or PS3. These are the places I can meet him and see what brings him joy, and so I learn about things that may not be of great interest to me, because I value my son and I want him to know that he is loved and valued.
2. Relationships do not have to be reciprocal. Every parental relationship starts with the parents pouring love into their children when they are born. At the earliest stages of life children are not able to reciprocate the love and emotion and nurturing that their parents pour into them, but as children develop there is the expectation that there will be a reciprocation of the love they have received. It is not that autistic children do not love, or even that they do not express love, but they are not hardwired to provide the love and feedback in the same way that most children will. It doesn’t mean that their parents love them less—in fact most parents of autistic children have invested more in their children to try to set them up for success even without the reward of the hugs and kisses that other children begin to give. As I have tried to learn, as best I can, to see the world through my sons eyes and to attempt to understand things the way he might. I have learned to love him for who he is and to value the ways in which he is able to express his affection. He will always be my son, and that relationship is not dependent on any reciprocity. It reminds me of the baptism service which end with the child (or adult) is marked with oil and the words of promise are “name, child of God, you have been sealed by the Holy Spirit and marked with the cross of Christ forever.” Parents and even God may desire reciprocity in their relationship with their children, but the relationship is not contingent on that reciprocity. We are who we are by the relationship because by birth or by adoption we have been joined to be a part of a family and we will be valued for who we are.
More to Come…
Sign of the Rose 