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!

Just Ask

 

Anybody else feel like the last few weeks have been a whirlwind of parties, activities, festive dinners, sickness and gift opening? The month of December always seems like that, but I feel like it's exaggerated when you have little ones that still need to nap.

In the midst of the December whirlwind, we recently attended an extended family party with lots of cousins we hadn't seen for at least a year and all of their children, many of whom we had never met. It was a lot of fun visiting and catching up with everyone.

While we were there, we were also given a brief glimpse of some of the social challenges that our little Charlie might have to face. The kids were all running around and playing, Charlie among them, when some of the older children noticed his eyes. They commented to Forrest that his eyes looked red, and then, keeping their distance, they came to the conclusion that he was creepy. Forrest calmly explained why his eyes sometimes appear red, and told the kids that he thought it was pretty cool. They all walked away, not sure what to think about it.

When Forrest told me that story, my heart broke and I got tears in my eyes. I know they weren't intending to be hurtful. And I know that Charlie's eyes are very different, especially to someone who's never seen him (or a person with Albinism) before. But it was still quite painful to hear other children refer to my precious son as "creepy."

In contrast, at the same party I was standing in line getting food when I heard another young girl ask her mom about Charlie and his white hair. I was so grateful when the mom told her daughter that he had a condition called Albinism, and then turned to me to ask more about it. She explained his light coloring and vision difficulties, and then also mentioned another child in her daughter's school with the same condition. I can't even describe how refreshing it was to have someone ASK. What a great example for her daughter.

Nearly everywhere we go, I see people turn and whisper to their neighbor. People point and stare, many people smile as they do so to make it seem less awkward. But so few people ask. Sure we get comments like, "look at that towhead" and "which one of you had the white hair when you were kids?" and (from old people) "his hair is as white as mine!". Sometimes when people comment I do take the time to explain that he has Albinism. But most of the time I just nod and smile, or say he's very special or unique. Because he is. But I really appreciate it when people just ask me.

I know it's difficult to find the right words to use. How do you ask without being offensive? But if you are honestly trying to learn more about a person without passing judgment, they have no reason to be offended. I think children often learn to be bullies because of their parent's unintentional teachings. Parents who point and whisper and stare will teach their children that those with visible challenges are scary, creepy, or weird. Parents who aren't afraid to talk to and ask about those with difficulties will teach their children that they are people too, and not something to make jokes about, shy away from, or treat cruelly. Please don't inadvertently teach your children to be a bully.

I know Charlie is different and I know he will be faced with a lot of bullying in his life. But I also know that Forrest and I will pour our hearts and souls into teaching him to be the bigger person. Also, Forrest is determined to teach him karate, just in case.

Just a Boy and a Girl

When I found out I was expecting boy/girl twins, I was super excited! There are a lot of things to love about that. Most people say "you can just be done now!" Clearly that's not the case. But having one of each is perfect, in my opinion, and I was super excited to get to see the differences in their personalities and devolepment, side by side. 

So far I have not been disappointed. They are so, so different. And obviously they have both had the same parenting, at the same time. They share all the same toys, are given all the same foods to eat, and are exposed to (almost) all the same experiences. And yet they are different. It amazes me.

Charlie is 100% boy. He is not the least bit interested in stuffed animals, clothes, dolls etc. He LOVES things with wheels. Cars, strollers, walking toys etc. He plays with them constantly. Sometimes he pushes them around the room, but many times he purposely tips them over so that he can just spin the wheels around and around. And then he examines every little part of whatever he's playing with to try and figure out how it all works. He loves pulling things apart and putting them back together. He loves hinges and is thoroughly entertained by opening and closing doors, books, and anything else that operates on a hinge. And he loves climbing anything and everything in sight.

Caroline, on the other hand, could not be more girl. She is obsessed with dolls, stuffed animals, and her blanket. She hugs them tight to her and rubs her face against the softness. She loves combing her hair, blowing her nose, cleaning the floor with wipes, putting on my blush, having bows in her hair (even though she prompty pulls them out, she begs me over and over to put them in for her), and dressing and undressing herself. She loves shoes and wants them on her feet all the time. She loves wearing my necklaces, and constantly brings me lotion to put on her hands and chapstick to put on her lips. She loves carrying around purses and stuffing random items in them. Like I said, all girl.

Charlie is a little bit reckless. He has no fear and he climbs everywhere and then head dives back down (even though he knows how to get down safely). He falls AT LEAST 10 times more each day than Caroline and is constantly covered in bumps and bruises. Caroline is a bit more careful. Her balance is much better than her brother's and she rarely falls. Charlie is pretty easy going and Caroline is a little high strung. Caroline crawled, walked, pick up food etc. quite a bit sooner than Charlie did, but Charlie's vocabulary was bigger at an earlier age. And by vocabulary I mean that he could make a number of animal sounds and car noises pretty early on :). 

They are simply the best. I love them so so much, and I love the special bond that they have. When Charlie cries, Caroline goes and squats down next to him and jabbers some nonsense in his direction, then pats his head and gives him a hug. When Caroline cries, Charlie cries too. Or occasionally he laughs. They can make eachother laugh more than anyone else can, and they love tackling eachother to give hugs and kisses. They think they are hilarious when they stand on either side of a door and swing it back and forth to eachother, or when they hide on either side of a chair and play peek-a-boo. I am so grateful that they always have their best friend to play with. And frankly, I'm a little bit jealous that I didn't grow up with a twin!

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.