The last couple years I’ve been focusing on a new way to give Cody a voice. There’s been several different ways we’ve tried over the years, of course, but this last method seems to be working the best. It takes so much time, repetition, patience, and adaptation. It’s a slow go, but it’s the only go we have at this point.
And on the topic of voice. Cody’s 16, going on 17, and I’ve been quite conscious in these past years (as he hits the years of young adulthood) of how I share “his story”. I often share videos and pictures of him on social media as he learns new things or experiences joy or adventure. Family and friends engage quite fully and it makes me feel proud to be his mom. I also have this compulsion to show people what he’s like, how he communicates, how he moves through life, in an effort to almost “de-sensitize” those who are not very familiar with what a person living with blindness and autism is like. I’m trying to say: “Look at Cody. Yes, he has body movements and sounds and methods of being which are so different from what we consider “normal”. Watch Cody a little while, take in his “abnormal-ness”, process it and accept it”. Also, I carry a deep pain and guilt over how other people experiencing disabilities are marginalized, maltreated and even abused in our society and I wonder if I can improve that somehow by showing people how loving, brave, worthy and interesting Cody is. I yearn to have people understand that he has value because knowing him makes us adapt and change our perceptions and understandings, it forces us to reexamine our values and “become better”. Also, I yearn to have purpose in my life, and sharing about Cody, being Cody’s mom, creates an opportunity for me to attach purpose and meaning to my life. I want, as everybody does want, to have my life make a positive difference.
Going even a bit deeper…having a son who lives with autism and blindness has largely impacted my life. It has created challenges within and around me that have often overwhelmed me. I have gravely missed opportunities and realities that families with “typical” children experience..and I will continue to miss them until my death. I sometimes feel sorry for myself and sharing about my experiences with Cody alleviates that to some degree.
So, who am I kidding…this is my story, not Cody’s.