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!

There's nothing wrong with being different

I took the twins in for their 6 months checkup a few days ago. Our pediatrician, who I really like, did all the normal stuff, asked all the normal questions and talked about normal development. The he started talking about his concerns with Charlie, making sure we're getting him in to see the appropriate specialists etc. He handed me a card of a woman who works in their office and handles all of the special needs cases. The minute he said that, my heart sank. I'd never thought of my son as being "special needs" before. It took me a few minutes to process that. 

After the appointment I was reflecting, trying to sort through my thoughts and feelings and wondering why I had reacted negatively to those words. Because the truth is, I've spent years working with and associating with special needs individuals. And I've loved every minute of it. My friends and students with special needs are some of the kindest, funniest, most loving people I've ever known. I had just never expected that one of my children would be among them. 

It really made me do some deep pondering. And then I realized why I had been bothered by that terminology. Because society has given "special needs" a negative stigma. As if there's something wrong with having needs beyond your own abilities. Like it's a bad thing. Just because they are different from us. Some people don't know how to act around those who are different. Really, they just want to be treated the same as everybody else. And that's what I want too.

I want Charlie to live as normal a life as possible. And I believe he's capable of doing everything that his sister is, and anything else he wants to do. I cringe when people stare at him at the grocery store. Or give me the questioning look that I assume means "why in the world is your child wearing sunglasses inside?". Or even when the doctor kindly gives him a stick but puts it right in his hand instead of letting him reach for it, like he did with Caroline. Inside I'm screaming "He can see it! He ca grab it in his own. Just give him the chance to try!" And I know most people are very well meaning. Like I said, I really like our pediatrician. He has been so kind and good with Charlie and I know he is very concerned for his well-being.

But people just don't know. Often we don't think before we speak or act, and it ends up hurting others. Having special needs is not a bad thing. It just means that some people need to do things a little differently than others. They might think and communicate differently. They might express their emotions differently than we do. But they're still people. And they still deserve to be treated with love and respect; not ignored, feared, teased or coddled. Wherever possible, they need to be given the same opportunities as those around them.

That's hard to do. It's something I am trying to improve on. It's so easy to just hand Charlie a toy when he's having difficulty finding something to play with. It's awful to watch your child struggle, and as parents it's natural to want to make things as easy as possible for him. But easy is not always best.

I realize that if I want others to treat him the same as they treat others, it starts with me. I'm still learning how do deal with Charlie's special needs. Heck, I'm still coping with the fact that he even has special needs. But now I can say those words and not be sad about it. Because there's nothing wrong with being different! When it comes to race, culture and religion we celebrate our differences. Well today and every day I'm celebrating the fact that Charlie is different. And I wouldn't trade him for anything.