What I don’t like is when a parent will rush up to me and apologize for their kid’s questions. I usually tell the parents that I like questions and I don’t think it’s a problem at all. I hope more parents talk to their kids and let them know that not every kid is born looking like a traditional person. Lots of people have physical differences. One way a person can be different is that they may not have hands or feet! If this was a conversation everyone had with kids, people would stare less!
Beyond talking to adults one at a time, I got to speak about staring and my thoughts on disability during a couple of TEDx Talks. That’s an event where people talk about a topic they think other people should know about. I had a chance to talk to a theater full of adults and some kids (including my brother) and tell them what I thought about disability and staring. I feel like the more I talk and the more information I share, the more I believe there really can be change! Kids need to know that not everyone looks the same. Not everyone acts the same. And differences can be cool. Lots of adults need to know that too. Speaking out makes it easier when a typical person meets someone with a physical disability for the first time.
MEETING NEW FRIENDS
I have a trick I use that makes it easier when I meet a new person. I’ll start up a conversation with someone and get to know him or her while I hold my arms behind my back. It gives us a chance to get to know each other for a while before the new friend learns about my limb difference. I don’t like when a new person’s first impression of me is about my little arm. There’s so much more to me than what you see on the outside. So I like to be me before the little arm can get in the way. If you know me before you’re distracted, my little arm isn’t as big of a deal.
I haven’t had trouble making friends as I’ve grown up. Maybe it’s because I’ve grown up in the same town all my life. Maybe it’s because I’ve been so active, and I’ve met so many people at school, in dance classes, and on sports fields. I don’t really know the secret. I do know my family doesn’t hide. We do a lot!
When I’m in a big crowd, I’ll sometimes use my hand to cover my little arm to avoid standing out. I’m not embarrassed by how I look; I just don’t always feel like being stared at everywhere I go. Sometimes I just want a break from that. On other days, I don’t care and I don’t hide. It depends on my mood.
One time, my mom and I sat down at an open table at the Boston Public Market to enjoy some chowder, and a mom, daughter, and son sat across from us eating ice cream. Immediately, their eyes locked onto my little arm. Usually, we can break the stare and ask if a staring person has any questions. But the three of them never stopped staring. My mom and I were so amazed that they never looked away while eating their ice cream. I decided to hide my arm in my purse, and they STILL didn’t stop! Eventually, they finished the ice cream, quietly got up, and walked away. It was so strange. Most of the time, we can turn staring into a conversation. That didn’t happen at the public market! Thinking about it now, I kind of wish I had slammed my little arm on the table and yelled, “Wanna talk about it?” It would have been fun to see how they’d react! Maybe I’ll do that the next time I feel like I’m in an awkward staring situation. And it just shows how important it is for me to keep doing what I’m doing—hopefully the next time they encounter someone with a physical difference, they won’t be so afraid to just ask.
4
FAMILY AND FRIENDS
Some of the most important people in my life are my friends! For most of my life, I lived across the street from my two best friends in the world. They’re identical twins, Quin and Reese. We’ve known one another since before we were born! My mom met the twins’ mom at a party while they were pregnant with us. I was born a few weeks later, and my besties were born a few months after that. We went to the same school until I moved a mile away and had to change elementary schools. It was worth it for the chance to live alongside a lake. Luckily, we’ve found all kinds of ways to be together—different activities and as many sleepovers as possible. The girls’ mom says we’re actually triplets, because that’s how close we are. That also means we don’t always get along, but we love one another very much. Sometimes we disagree, but we always make up in the end.
I’m excited Quin and Reese are going to the same middle school as I am. Through the years, they’ve always had my back. I have always tried to have friends around who I can lean on to help me deal with people and tiny problems I might have. When I was younger, if I had trouble buttoning a pair of pants or zipping a jacket, I would have a friend help me out. I have made a point of doing everything by myself, but when I need someone, I’m not afraid to ask. Plus, that means I don’t need to rely on teachers or other adults as much. I would rather lean on my friends than on grown-ups.
Recently, the girls had a birthday and decided that instead of having a huge party, they only wanted to celebrate it with me. Our families traveled a couple of hours away from our town to a hotel that has a water park inside.
We let our brothers stay with my parents while we stayed in a room with Quin and Reese’s parents. We had an amazing time playing in the water, being goofy, and just not caring about what anyone thought of us. I think that’s what makes the girls such great friends. We support one another. I feel like I can be the real me without worrying about what Quin or Reese will say.
Friends are so important, and I am lucky to have made friends all over the country, thanks to all our travel and the Born Just Right community. But the ones who are the most important to me are all the great friends I’ve made at school and through my activities.
FRIENDS KEEP CHANGING
As I get older, friendships can be kind of strange. When I hang out with my friends, I’ve noticed we all have a lot of feelings and we can easily get angry at one another. But when something really bad is happening around us, my friends will stop and back me up. It isn’t often that I have problems with other people, but there have been times when a kid gives me extra trouble.
Sometimes my friends and I have fun with my little arm. A few years ago, I remember having a regular problem during recess. There was a kid who couldn’t stop being dramatic and talking about my little arm all the time. It was funny at first, but it got annoying after weeks and weeks of the same reaction. Eventually, my friends and I decided to have fun with it. Every time the kid would gasp and stare, I’d say that I didn’t eat pickles, so I got a pickle-shaped arm. Yes, it’s silly. But it was a fun joke to have with my friends, and it really did get the kid to leave me alone.
Most of my friends and I talk at school or on our phones, mostly through FaceTime or text message. I’m in a couple of group texts that can talk about all kinds of things . . . but I try not to type anything that can get me into trouble. At some point, group texts seem to lead to drama. But they also help us decide what to wear to school!
I also connect with my friends online. I e-mail with a few. Others I talk to on Instagram or Facebook. My mom watches what I post really closely, so I am careful to think about what I say and share. But it’s really cool to be able to see people I know who live in other parts of the country or the world!
SCHOOL AND FRIENDS
Living in the same town and the same school district my whole life means I keep finding more opportunities to make more friends. But as I get older, there are also a lot more people who judge me. I don’t think it’s just because I have a little arm. I think it’s more because I stand out. I have a lot of opinions, and I get caught talking when I should be paying attention. Any time I make a tiny mistake at school, I get called out for it. That happens with kids and teachers. It drives me crazy. A lot of times, I will be the one to get in trouble even if a group of us are doing something we shouldn’t. It happens to me a lot. I get annoyed and try not to react poorly to my teachers, but my facial expressions always give me away. My mom says I need to work on my poker face. Whenever I try to do a poker face, I just end up laughing.
I’ve had some really great teachers, but one of my favorite teachers hel
ped me wrap up elementary school. I was always stubborn about taking time to read books, but my fifth-grade teacher, Mrs. Wilcoxson, somehow got me reading more than I’d ever read before. She encouraged me to read just a little every single day. I’d heard teachers say that before, but this time I really took the advice seriously. These days, I can’t stop reading all kinds of books, especially mysteries and historical fiction stories. Along with reading, my teacher was always willing to stick up for me when I needed a little support from a grown-up. She also wasn’t afraid to call me out for making bad choices. I think that’s what made her such a great teacher. Plus, she had a really good sense of humor. Everyone needs a laugh sometimes at school.
5
CAMP NO LIMITS
Have you ever traveled somewhere new but instantly felt at home? That’s how I feel when I go to Camp No Limits. It’s one of my favorite places to visit in the whole world.
My mom says she discovered the camp while searching the Internet when I was really little. Just like everything else, my parents wanted to make sure I had all the experiences many other kids my age had. She decided I was old enough to attend for the first time when I was three years old, and she felt like Camp No Limits would be a great fit. I have tried not to miss out on the camp ever since. Camp No Limits happens in a lot of different locations each year. I’m lucky there is one that started in my state. We can drive there!
Camp No Limits is a family camp where kids with limb differences, their siblings, and their parents can go to camp together. The first time my family attended camp, I was hooked. I was around older kids who looked like me—that had never happened before. The first couple of years, there weren’t a lot of families, but the kids who were there were important to me. They’re still the people I consider my first mentors. They taught me how to tie my shoes. They taught me ways to do my hair. They taught me how I have friends who really understand what it’s like to be different. Camp No Limits happens here in Missouri, but it also happens in a lot of other places in the United States. I’ve had a chance to attend a couple of others out of state, and those feel just like home to me too. No matter where camp is, I’m with family.
The Missouri camp is on a hilly spot next to a river. We drive through twists and turns for what feels like forever to get there. When you first drive up, you see a big hotel-looking building. Then you walk down a steep hill, and there’s a beach, a mini-golf course, and a bunch of smaller cabins. For some reason, the weather is usually sticky and hot. In most cases, you’d catch me enjoying the air-conditioning inside. But at camp, all I want to do is play outside. There are families and kids everywhere—and best of all, a lot of those kids look like me! Even though I participate in a ton of sports and other clubs and activities at home, camp is the only place where I know I won’t be “different” to most other people.
When we first arrive, everyone from camp meets up in the meeting hall. We introduce ourselves to new people, snag camp T-shirts, and get the chance to just be silly. There’s something magical that happens when a bunch of kids with limb differences meet. We have an instant connection. We may not all agree on the same things, and we may have different challenges, but we have an understanding. It feels so natural and comfortable. I don’t have many places I go where I can feel like myself and relax. Camp No Limits is one of them.
At camp, I feel excited and ready to learn new skills and ways to be strong. I have extra energy in my body, and I am so comfortable around everyone—the camp counselors, and the kids and their families.
I can thank camp for introducing me to some amazing mentors, some of whom are limb-different teens and adults. It is really cool to know that I’m not alone and that I can learn from older people who have been there. I learned skills like zipping zippers, tying shoes, and buttoning buttons at camp. I even learned tips on how to put my hair into a ponytail. Those may not seem like challenging tasks, but you have to work a lot harder on learning those skills with one hand!
The person I think about the most at Camp No Limits is one of the mentors, Joshua Kennison. Josh (the name I use with him) was born without hands, feet, or a tongue! He has attended so many of the camps and is an amazing coach to kids, especially me.
The first time I met him, I was four years old. We became instant friends. From my memories back when I met him, I remember climbing up on Josh’s lap and just laughing with him. Josh is so comfortable being himself. He looks different, but he is so easy to get to know. He helps me feel more comfortable with my differences. Even more amazing, Josh is one of the fastest people I’ve ever met. For a while, he was on the U.S. Paralympic Track and Field team as a sprinter and long jumper. When he runs, you can barely see him as he zooms by.
It isn’t Josh’s speed that makes him special. For me, I feel lucky to have a mentor who grew up knowing what it’s like to be different and wanting to help others. Josh has talked to me a bunch of times over Skype, and I see him most summers at Camp No Limits. We’ve even had a chance to visit a couple of times when I travel to Maine (where he lives). He’s taught me a lot, not just in ways that help me as a kid. He’s also taught me how to be a mentor and help younger kids.
Because of people like Josh, I enjoy finding the younger, shy kids and talking to them. One of my best memories of camp is working with a younger camper and helping her learn how to tie her shoes. She was having a hard time.
“I can’t do it,” she kept saying each time her attempts weren’t quite working out. She was crying, and I could tell she was really frustrated.
I looked her in the eye and said, “ ‘Can’t’ isn’t a word I use.” I knew she could do it, even if, in the moment, it felt like she couldn’t. But the next day, she did it! After just one day of getting super frustrated, she was so happy. We all cheered and were so proud. That feeling of pride is something I love thinking back on when I talk about Camp No Limits. I love teaching life skills like buttoning buttons and tying shoes. Those are skills I learned from older campers, and from my own attempts at figuring these things out! It’s so cool to know I’m helping younger kids learn things I needed to know, because they need to know them too.
The limb-different kids get to learn life skills through physical and occupational therapy, but we get to do a lot of typical camp stuff too! For example, we learn about Pilates and how important it is to keep a strong core. (My stomach muscles are super strong.) The founder and executive director, Mary Leighton, tells us all how a strong core helps everyone—no matter how many limbs you do or do not have!
It’s not all hard work during camp. Every year, I get to make new friends and play. My favorite part is swimming. The camp is next to a beautiful lake, kind of like the one next to our house in Columbia. It has a sandy beach where we can play for hours. When you look along the water, you’ll see a pile of helper legs that kids left on the edge before they jumped in to get wet. Each year, the kids have to take swim tests so we can get access to all water areas without an adult. It’s not easy. You have to tread water for what feels like forever, and then you have to swim laps. No one ever judges kids if they can or can’t pass the test, but it’s a huge motivation for us to keep getting better at swimming. I have a friend who is motivated to pass that test. She has seen a lot of our friends pass, and she wants to be able to join us too! She hasn’t passed the test yet, but she’s determined to do so, and I know it’s going to happen one of these days. And we are going to help her however we can. Everyone accepts one another and all the different ways we look. It is a great feeling I carry with me all year.
My brother used to go to Camp No Limits with me when he was younger too. My mom has been able to attend almost every summer with me. My dad has to stay at work mostly, but he’s been able to attend a couple of times too. Camp No Limits is an extended family for all of us.
OH, BOY! CAMP JOY!
In addition to Camp No Limits, I recently had a chance to start attending a whole new camp that’s nicknamed Amp Camp. It’s really called Paddy Rossbach Youth Camp, a
nd it’s run by the Amputee Coalition. That’s a big national organization that supports people with amputations and people who are born with limb differences.
This camp is different because we camper kids leave our families behind. We get to fly to camp all by ourselves. The first time I went to camp, I was so nervous flying by myself, but when I got there, I met so many new and old friends, including a couple of Camp No Limits campers! Kids stay in cabins in their different age groups, and there are separate boys’ and girls’ cabins. Instead of life skills and family support, the camp is focused totally on kids doing kid stuff. We swim, make crafts, and even have a camp dance. I don’t have to be a mentor. I don’t have to teach. I just get to be a kid surrounded by other kids who have the same kind of differences. Even most of the camp counselors have limb differences! Camp No Limits has limb-different mentors, but Amp Camp seems to have even more. I have never experienced feeling as normal as I do at that camp.
I am lucky to attend both camps each year. It feels really good to be able to get away and just be me, without any judgment. The kids I hang out with at both camps deal with the same stuff I manage in real non-camp life. We just understand.
Born Just Right Page 3
