Orientation and Mobility

My little Charlie is amazing. He plays and runs and acts just like a normal little boy. Because he is just a normal little boy. Most of the time I actually forget that he has Albinism. It catches me off-guard when we go out and people stare at him, or comment on his hair. To me, he is just Charlie. My sweet little rhinoceros.

Sometimes, though, it becomes painfully apparent that he has a vision impairment. Especially when he is in an unfamiliar environment. The biggest problem with his vision is his lack of depth perception. The first time he came to our new home, for example, he would get on his hands and knees when transitioning from the carpet to the tile, because he couldn't tell if there was a drop or not. All he could see was that there was a change. Another problem is when we are outside. He loves being outside and he runs and plays right alongside Caroline. He has, however, fallen off of the curb a few times. He has difficulty seeing the differentiation between the raised sidewalk and the lower part of the cement.

Last week we were playing outdoors and as Caroline and I walked on ahead, I turned and watched him on the sidewalk. He slowly approached the curb, got down on his hands and knees, and crawled down onto the cement beneath. Then he faced the change from the cement to the pavement. My heart burst into pieces as I watched him put his hands back down on the cement and hesitantly felt around with his foot of the pavement. He finally got to the point where he was confident that he could step there, and then he stood up and walked to join his sister and me.

A few days later we were outside building a snowman. I set both the kids out in the snow and then I joined them. Caroline soon started moving around and helping me pack the snow. But Charlie didn't budge. He just stood there quietly, both feet deep in the snow, and watched. After about 10 minutes he started to cry, so I picked him up and walked around a little bit, wondering why he wasn't joining us in building the snowman. And then I realized that he couldn't tell where the ground was. So I set him back down and I held both of his hands and I walked alongside him as he took his first few unsure steps. He was very hesitant at first, but soon he started enjoying himself and I was eventually able to hold only one of his hands while he walked circles in the snow.

It hurts to think that he has to do that. I tear up just thinking of the challenges he faces now and will continue to face throughout his life. But I am equally amazed by him. That he does it. That he doesn't just stay inside because it's easier. That he doesn't just stay where he knows he is safe. He is a fighter and a champion and I couldn't be more proud. I know he will do great things, regardless of his condition.

Next month Charlie is going to be meeting with a new specialist. Her official title is "Orientation and Mobility Specialist," but people refer to her as the "white cane lady." She is going to teach Charlie how to use a white cane when he is outside, so he can feel when the ground changes from up to down. I have mixed emotions about him using a white cane. For the most part, I am anxious for him to learn anything that will help him maneuver and that will help prevent falls. Partly, though, I am hesitant for him to have something that will make him even more different. We will see, when he gets older, whether he chooses to use the cane or not; but for now I am trying to focus on all of the good that can come from it.

Wish us luck!