My brother, Dustin Ryan Bartz, was born with severe congenital myotonic muscular dystrophy and other complications created from a lack of oxygen reaching his lungs shortly after birth. Dustin would qualify as “non-verbal”. From his birth situation, he had hydrocephalus, or what they call “water on the brain” (which we didn’t technically discover until he was 9 or so).
I was 3 when my brother was born, and over the years we developed many ways to communicate. I learned to read my brother’s body posture to match his moods. I knew hunched shoulders and a pulled back lower lip meant he was afraid. Dustin made noises like grunts and coos and whines. Some of the sounds that come from my 7 month old baby girl remind me of my brother. I learned to interpret those noises and grunts to Dustin’s typical needs and desires and be his voice to communicate with others.
If my brother and I were at one of my softball games and a teammate’s parent wanted to talk to Dustin, I’d often be there to answer questions or help Dustin trust the interaction and enjoy it. Dustin was easy to appreciate; he was cute, friendly, good natured, and happy to have attention. Being one of the caretakers for my brother as his sister, I often got positive attention in being around him when others wanted to meet him. People viewed me in a positive light and appreciated when I would speak with or for my brother.
My brother lived 13 wonderful years and passed away when I was 16. I loved many things about my brother and miss him greatly. But if I am to be completely honest as a sibling, part of what I missed about my brother was how I defined myself by being his sister. I missed the feeling of importance when someone would talk to me in order to talk with him. I missed the instant positive feelings people would have about me when I pushed my brother’s wheelchair. I missed that people would look at me and smile when I was in public with my brother. Without Dustin, I faded in to the crowd much more than I did with him. I wasn’t special on sight to those who would have natural empathy to someone like my brother and his family.Growing up the sibling of a wonderful boy with myotonic muscular dystrophy, a wheelchair, and drool often on his shirt meant people reacted to me a certain way, and that I learned how to interact with people in a certain way.
I write this for a specific audience as the target – siblings of individuals with disability who do not speak or may be considered non-verbal. I guess as a writer I enjoy psychoanalysing myself, and lately I’ve been wondering how having a sibling who did not speak affected my speech abilities and tendencies.
Do I value words more because that was a gift I could give to my brother?
Did I want to invest in my language ability because it proved so valuable as a child?
Do I have more controlling tendencies because I perceived myself at times of having a role to “speak for” my brother?
Is part of the reason I take myself so seriously because as a child I viewed talking as part of my “job”?
I was quiet in school, avoided conversations I considered frivolous, have a really hard time making jokes and generally only liked to talk to my peers if it were “business talk” or about a common interest I already knew we both shared. Was part of that because life seemed so serious with a brother who would likely (and did) have a shorter lifespan than me? Was part of that because I didn’t get to have typical conversations with my sibling? Was it because I felt that adults listened so intently when I spoke around my brother?
I taught AP Language for 6 years, published a book about my family, and use my language skills in my tech job. I love language, love writing. I guess in my life I don’t need to know exactly why that is, but I’m also a military Air Force brat who moved around a lot. I enjoy reading about the psychology of military brat children, relate well to others like me, and I really wonder how much I would have in common in language and speech tendencies with other siblings of individuals who do/did not speak or who might be labeled as non-verbal.
So… if you are a sibling like me, how do you think your sibling experiences have shaped the way you communicate as an adult?