Yesterday, James and I went to a family support conference for children who are developmentally delayed. Due to Eddie having Autism in addition to being blind, this conference definitely spoke to us. Most of the event was considering Eddie’s future, which can be difficult for anyone raising a special needs child. The concept that stuck out the most in all we heard was the idea that, “Individuals live within the context of their family.”
Eddie has a lot of unique things about him. First, he’s blind, and none of us are. Second, he has little verbal communication skills, and my daughters talk ALL the time. Third, he prefers to be alone without much interest in the rest of us, which makes us all think of him in a separate context. When I think about what makes up Eddie, I think about him as in individual, but he really is part of a bigger picture…he’s part of our family.
When recently talking to his teacher of the visually impaired, and wondering if we do enough at home with Eddie, she pointed out that our daughters were doing just fine, and why would we think Eddie wasn’t getting what he needed? Her comment struck me as odd, because my first thought was, “What do his sisters have to do with him?” Looking back, she already sees him within the context of our family, and attributes much of who he is, with who we are.
I’m trying to wrap my brain around a description of him that is seen through the lens of our family. I’m not sure why this is so difficult, but it certainly isn’t easy. However, to think about his future, we have to think about him as part of all of us. We live within a family, and a community, and Eddie’s future cannot be determined in isolation.
I’m not sure where to start, other than with the basics…simple character traits that remind me he is part of us and we are part of him. For example, he loves to sing and dance…and so does James. He loves to listen to music…and even when I was carrying him he was exposed to Norah Jones via speakers on my tummy.
When he was an infant I sang “American Pie” at least every day, and that still remains one of his favorites. He loves Dora the Explorer, because his sisters have both insisted it be run on repeat. He enjoys a long car ride, and hanging his hand out the window, because our family…and extended family…have always loved a road trip.
Although my list is still small, it is growing. I’m unsure what his future will hold, but I know that whatever decisions we make for Eddie will be because of all of us…and within the context of all of us. Eddie is a Coleman…not simply an “Eddie.” He has extended family and friends that will always be a part of his life. His journey may never be simple, but I’m always more game for an adventure. I’m guessing that because he is part of me and this family…he’ll be up for an adventure, too.