“CENTER OF THE UNIVERSE” SYNDROME"

By Gwen Botting. MPVI article, July 2007, reprinted with permission of Michigan Parents of Visually Impaired Children

As parents, most of us remember how our babies took up all available space in our heads, hearts and homes. Infants know nothing more than that they have needs and they want them addressed and they want them addressed NOW. Babies are the Center of the Universe, and for good reason. During those precious early years, children learn to feel secure and loved. As we grow, we learn to decide who is mom and who is dad and what they do for ME. There might be other adults, children, or pets, but I am still the Center of the Universe.

Once we are old enough to go to school, most of us discover that there are OTHERS. Very slowly, we discover that sometimes we have to put aside what we want NOW in order to have something else that is valuable later. This is a lesson we tend to forget or ignore selectively as teenagers. But eventually we become adults who understand that there are many people in this world and we can’t always have everything we want when we want it.

We’ve all met adults who have not learned this lesson very well, and frankly, most of them are not people I want to invite to dinner. The problem I see is that many of our children who are blind or visually impaired seem to have a Center of the Universe attitude that is stronger and harder to dislodge than other kids their own age. I think this makes sense. The world ends at the ends of their fingertips. Other than disembodied voices and sounds, that other stuff in the world doesn’t REALLY exist until they move into it somehow. There are many things that happen in the world around them that are completely inaccessible to a blind person. My son doesn’t know if I’m reading a book, concentrating on a grocery list, paying bills, or sitting around waiting for him to ask me to do something for him. To him, there can be no good reason why I am not available to satisfy his every whim. Our blind and visually impaired children have always had tons of adult “help” all their lives, adults whose livelihood – and in the case of parents, sometimes our very identity – is based on our children’s need for them, and so our children learn that they are indeed VERY IMPORTANT. I’m not saying that’s a bad thing, but it does have consequences for other less subtle behavior issues with our kids. Our kids can become “takers.” They may have a hard time learning to “give” things like compliments, thanks, a listening and engaged ear when holding a conversation with someone, or empathy. They may have a hard time remembering to consider another person’s feelings, especially since they cannot read the facial expressions of someone whom they have just hurt with their words. Even more concretely, if they don’t know that a classmate has their arm in a sling, they don’t know to ask what happened. Recently a counselor at Camp T asked me for advice on what to do about campers who run into you, back up a step and then plow right on ahead again and again, until they finally bounce off you like a ping-pong ball. Kids need to learn that they cannot be allowed to do this. Does this happen only at camp because other blind people don’t get out of our kids’ way? I doubt it.

What to do? As already overwhelmed parents, we dread one more thing to think about. But we really do need to ensure that our blind children get opportunities to help other people, that they learn give and take in conversations, that they try to put themselves in “another’s shoes”. I can only tell you what we have tried to do. Both of my children help their grandmother deliver “Meals on Wheels” as their schedules allow. Greg participates in church activities that stretch his abilities. He writes thank you notes. We have discussed Greg’s needs with most of the primary adults in Greg’s life, including his teachers, and we are all on the “same page.” We all need to help him learn to hold proper conversations, give adults proper respect, express gratitude appropriately, apologize for missteps, and try to understand others’ point-of-view by actively listening. We explain the nature of a proper interaction, role play, sometimes doing it really badly to emphasize the issue, and repeat ourselves incessantly. It is critical that he learns the necessary social skills to become a gainfully employed, satisfied adult. We can only hope that the methods we are using will work.

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