Great Post

This was a previous post on another CHARGE child's blog. It explains some of the major obstacles of CHARGE so perfectly, I had to post it on my site.

"Recently, I was reminded of my first opportunity to attend a “CHARGE Syndrome 101” training to begin to understand the syndrome of my infant daughter. We did a simulation where we plugged our ears and covered our eyes to simulate the dual sensory impairments of CHARGE. Just impacting those two senses in a relatively small way – ear plugs to cause a mild loss and looking through a plastic bag to blur and distort vision – set all of us behind greatly. We had a hard time carrying on conversations, moving about the room, and engaging in any activity. Most people shut down, tried to disappear, hunched to make themselves small, and stayed in their spots avoiding conversation or contact with others.

After we’d experienced that and realized the incredible impact a small impairment can have, the presenters told us to then imagine that ALL of our senses are impaired. Imagine that you can’t hear or see. Your muscle tone is low and your balance is off or non-existent so it takes lots of energy just to stay upright in your chair and control your body in space. You can’t eat so you’ve never experienced taste and have very limited oral motor skills. You can't smell because your nasal passages have been closed and even once they are open, your sense of smell is probably non-existent. You are tactile defensive so you have had limited touch experiences and the ones you have had are uncomfortable to you. Not to mention the many uncomfortable and painful medical procedures endured from birth on.We learn everything through our senses. If you get poor input from your senses, how do you understand your world? Even if it were you inside, as you are now, with “normal” intelligence, how would you learn? How would you show us what you know?