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.

Albino.

I cringe when I hear that word. For the first few months after Charlie was diagnosed with Albinism, I found myself getting frustrated and even angry with people whenever I would hear them refer to him as an albino. I felt like I needed to defend him from others who didn't understand who he really was, and that "albino" had nothing to do with his real identity.

Lately, though, I've been thinking a lot about my son's future. For years Forrest and I have dreamed about travelling around the world and spending years living in different countries. And I always imagined that we would take our children along with us, giving them new experiences that most children wouldn't have. We talked about travelling while the our children were young, and being settled by the time they reached high school. But now my thoughts have shifted toward Charlie, and what would be best for him. 

And I think it will be important for him to not be offended by the term "albino". Because he's going to get called that - not necessarily out of cruelty or meanness, but just because people don't know the proper term. I was one of those people, until my little Char-monster came along. I also think it will be important for Charlie not to be the new kid all his life. I think we will need to be settled long, long before his high school years so that he can grow up with people who know him and who don't think he's strange for having albinism.

I realize I can't protect him from every harm and evil out there. But oh how I wish I could. I realize that he will be teased and stared at, and the thought of it makes me want to cry. But I know he will be so much stronger because of it.

He reminds me of this talk in the April 2014 General Conference, given by Neil L. Andersen:

"In nature, trees that grow up in a windy environment become stronger. As winds whip around a young sapling, forces inside the tree do two things. First, they stimulate the roots to grow faster and spread farther. Second, the forces in the tree start creating cell structures that actually make the trunk and branches thicker and more flexible to the pressure of the wind. These stronger roots and branches protect the tree from winds that are sure to return."

That's my Charlie. I know the winds are going to come. And I know he will grow stronger and be given the tools he needs to withstand the damaging forces around him. I already find myself amazed by Charlie's determination. Where Caroline gets frustrated with something that she can't do and brings it to me to do instead, Charlie spins an object around in his hands and stares at it closely until he figures it out for himself. I have learned so much from him already, and I think he will continue to teach me things throughout my lifetime. I'm so blessed to be a parent to such a wonderful and special spirit.

Charlie's Eyes

The last time Charlie went to the Opthalmologist, he was 5 months old. He had just barely started to show signs that he could see. He would follow my lit up cell phone and open his mouth for the spoon. Occasionally it seemed like he could see our faces. But that was about it. The doctor diagnosed him with albinism, and estimated that he was legally blind. We were hopeful that his vision would improve, but there were no guarantees. We were referred to Early Intervention through the Utah School of Deaf and Blind, and Charlie began receiving vision and developmental therapy 3 times a month. 

The vision specialist that comes is awesome! She teaches me a lot of things that I can do with Charlie to help improve his vision and to help him learn to function with low vision. She brings something new everytime she comes and Charlie absolutely loves the toys she brings for him to play with (So does Caroline!). These are some of the toys she has brought.

Now he is 9 months old, and his vision has improved more than we could have hoped for. The first time he cried when I left the room made me so extremely happy! Because I knew he could see me leave. Funny thing to be excited about, I know. But it was so exciting. Now he looks at me and gets excited when I walk into his room, because he can see me from his crib. We'd worried that he would be delayed in crawling because of his low vision, but he has had no problems whatsoever. From his bedroom, he army crawls all the way down the hall to get the vent on the wall in the living room. It is so rewarding to see him have so much motivation to crawl. His high chair tray is tan. And I put tan colored puffs on his tray. He can see them and he chases down each individual tiny little puff with his pudgy little fingers. It's adorable.

We knew he was doing well. So last week when we took him back to the Opthalmologist, we expected to hear good news. But I didn't expect to hear everything the doctor told us. He told us that Charlie had improved so much that there was no reason for him to be in therapy. He said that in the past 4 months his vision has improved from about 20/200 to about 20/80. No longer legally blind. He told us that Charlie's eyes looked fantastic and that he didn't forsee any serious vision problems in the future. That Charlie would be able to grow up just like his sister (except for the light sensitivity). He did prescribe a second pair of glasses with a lighter tint so that he can wear them inside too. But wow. Words cannot describe the joy, relief and excitement that we felt to hear how well he was doing. Of course we already knew he had improved. But hearing good news from a doctor when you are so used to hearing not-so-good-news. Now that is wonderful. 

We are so grateful fo the improvements that our little Charlie has made. He is so smart and is such a happy little boy. I could never imagine my life without him. And without his beautiful little eyes.

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.

My Fair Child

Finding out you are pregnant is such a magical experience. You suddenly start planning your life - imagining what you little one will look like, wondering what activities they'll enjoy etc. You have in your mind all these ideals and everything, in your mind, will be perfect. As the pregnancy continues you get more and more anxious to meet your new little creation. And then the birth comes and at the end of it you are handed a perfect little bundle, straight from heaven (or in my case, two little bundles.) You never in a billion years would have imagined that your perfect little miracle could have any challenges or imperfections.

When Charlie was born, all the nurses exchanged "the look." None of them said anything, of course, and at the time I didn't really notice it. I was so wrapped up in the beauty of the moment. Holding him and his little sister tight, seeing their perfect little fingers and toes. I noticed his snowy white hair, of course, everybody did. But it wasn't until I saw his eyes that I thought something might be wrong. At birth, they had no pigment. None at all. They were red as could be. In certain lights they looked brown, but deep down I knew they were red and I knew what that meant. But I wasn't ready to admit it yet. We had various doctors tell us different things. Some said they wouldn't be concerned, that they'd seen plenty of babies with white hair. One doctor bluntly told us that there was absolutely no pigment and that he was certain our little boy had albinism. That was when he was 3 days old. I was heartbroken and when I left the office the waterworks began. Forrest helped calm me down and we decided that we would go see a geneticist. The geneticist gave us a lot of hope. She told us he looked happy and healthy and that if he did have albinism it was a very minor case since his eyes didn't scan back and forth (it's called nystagmus). She referred us to an ophthalmologist who said he thought it was albinism but he couldn't be certain yet. A few weeks after that appointment, the nystagmus began. It wasn't too bad at first, but it continually got worse. His eyes never held still - they were constantly scanning from one side to the other, never focusing on anything. Nothing happened for a few months, but as Charlie got older I began to notice a severe lack of visual response. He wouldn't look at me. He never made eye contact. He couldn't follow objects with his eyes. I knew it was bad, but I kept pushing the thoughts that something was really wrong out of my mind. Then at his 4 month checkup the pediatrician started asking questions. He was examining Charlie's eyes and Charlie wasn't responding to the light. He asked me if he ever responded to visual cues. I said no. Then the doctor started crying. That was unexpected. He told me to have hope, but in that moment as I started tearing up, I faced the reality for the first time. The reality that my perfect little boy might be blind. My sister had come to the appointment with me and she put her hand on my shoulder. I tried to keep it together through the rest of the appointment, but when I got home I cried and cried. For about 2 days. The pediatrician referred me to an ophthalmologist here in SLC and I made an appointment for as soon as we could get in (about a month later). One day during that month, Forrest and I were getting the kids in bed. We were holding them and singing to them. I had Charlie, and as I was singing, he looked up at me for the first time and made eye contact. It brought tears to my eyes, and when Forrest and I left the room he held me tight and we both reveled in the moment that we thought our child could see for the first time. As the days and weeks went by, he quickly began looking at bright colored toys, following things with his eyes, opening his mouth when I'd move a spoonful of food toward him, and reaching for objects. By the time his ophthalmology appointment arrived, I knew he could see, and that brought so much peace and joy to my heart. The ophthalmologist examined Charlie's eyes and then spoke the words that I was finally prepared to hear "There's no doubt he has albinism." I was surprised by how well I took it. And Forrest too. The odds of having albinism are 1 in 17,000. And our little boy is the one. That means that both Forrest and I carry that recessive gene, and that we have a 1 in 4 chance of having children with albinism. That part is shocking, but we were finally ready to admit it and to face it. The doctor answered our questions, told us that at the moment Charlie is legally blind (even though he can see, it's not very well) but that hopefully his vision will improve dramatically in the coming years. He wrote Charlie a prescription for some glasses that would help protect his eyes from light and that would correct his astigmatism, which is pretty severe.

After the appointment we went to the optical center where we spoke with the pediatric specialist to order his glasses. She brought up some concerns that I had never considered - namely, how Caroline would cope with Charlie wearing glasses. She suggested that when the twins get a little older and more aware, that Caroline will feel left out because she doesn't have glasses. And that we may get a pair of inexpensive child sunglasses and pop out the lenses for her to wear if she gets upset by it. I'd never thought about how his condition might affect her. The more immediate effects would be that I can no longer put my kids right next to each other on the ground to play, because Caroline would be constantly trying to grab the glasses. Which she does. It's been an adjustment, but the glasses do help Charlie a lot. He does pretty well with leaving them on, but every so often (usually when I leave the room) he pulls them off as quickly as he can. I try to get him to wear them all the time, like he's supposed to, but it's hard. I take them off when he gets tired because he gets really frustrated with them if he's trying to rub his eyes (which he does a lot when he's tired.) I take them off when I'm nursing because Caroline won't eat if she sees them. And I take them off for bath and naps. They get dirty so fast because he pulls them down and sucks on the lenses, so I feel like I'm constantly putting them on, taking them off and cleaning them. It's definitely the hardest on little Charlie but he is a really good sport about it most of the time.

It's been an emotional adjustment too, getting used to seeing our little boy wearing dark lenses. To never get to see his eyes. To accept the fact that he will likely wear glasses his entire life. And to think that he may never be able to drive a car. That he might struggle to read and might have to use a magnifying glass to do his school work. But when I get feeling particularly overwhelmed by it, I remind myself how grateful I am that he is healthy. And how thankful I am that I have him and his sister. They are truly little miracles and I love them with all of my heart.