Kendra Gottsleben

Kendra Gottsleben, a marketing communication specialist for the USD Center for Disabilities, wrote "Kendra's Perfect Dance" to describe the challenges and rewards she experienced as a young dance student with MPS.

Born and raised Vermillion Native, Kendra Gottsleben, recently published her third book entitled, “Kendra’s Perfect Dance Routine.”

The children’s book, which came out in November, follows Kendra, a character based on the author as a child who struggles to prepare for a dance recital due to her rare disease and the physical limitations that come with it.

“This book is talking about overcoming some of those fears of failure or things like I can’t get this dance step, it’s challenging, “ Gottsleben said. “Just showing that overcoming our fears or anything is part of life and everybody has that. We all have to face obstacles and how we choose to overcome that and how we choose our attitude in how we overcome them is how we live our life.”

The story, like her first children’s book, stems from personal experience, growing up with a rare disorder called Mucopolysaccharidosis, Type VI (MPS VI).

“When I lived in Vermillion I took dance classes and I didn’t have the stamina to stand all the time so a lot of this book is kind of true,” Gottsleben said. “I talk about a stool in the book and I used a stool while I was at practice and while I was on stage. They had a stool offstage in case I needed it. Even though I had a rare disease I was still able to be determined and accomplishing what a lot of kids or girls like to do.”

According to Gottsleben, her path to this third book started with her first self-published book, “Live, Laugh, Lemonade: a Journey of Choosing to Beat the Odds” which came out in 2012, then came her first children’s book, Kendra’s Lemonade in 2014.

“Then I was like, ‘oh, wouldn’t it be fun to kind of do a series?’” Gottsleben said. “In this book that I just published, the character doesn’t look exactly look like the character in my first kids’ book but it’s kind of a continuation of the Kendra character.”

Learning to write for children was quite a process, according to Gottsleben.

“I don’t know how many drafts because I felt like it was a ton,” Gottsleben said. “I would say with the kids’ book probably a good 15 drafts. The first couple of drafts I was still trying to figure out where the book was going or where I would be ending. But once I kind of figured out why the character was practicing or why the character was doing what she was doing, (she was doing it because she was going to do a performance) I thought the performance would be a good ending point.”

The language used in writing for children takes a lot of thought, according to Gottsleben.

“With my book I wanted to simplify it so kids could understand, but at the same time I didn’t want to simplify it too much,” Gottsleben said. “I still used ‘rare disease’ I still used ‘MPS’ because my thing is books are used to learn from. So I kind of picked and chose the words I wanted them to learn like if they didn’t know what that word meant maybe they would go look it up, but for the majority of my words I used a much simpler word choice.”

Gottsleben looked to professional editors but also family and friends for feedback while working on her drafts.

“My mom, her background was education,” Gottsleben said. “So, I’d kind of have some drafts and have her read it and be like ‘how do you feel like if you were reading this to your class or with the age that you teach would the students pick up on these words or would they not?’ So it’s definitely kind of a collaboration because I’m not a teacher. I don’t have kids.”

“Kendra’s Perfect Dance Routine” differs from Gottsleben’s first children’s book in that this was her first time working with a publishing company versus self-publishing.

“This publisher kind of reached out to me so I haven’t really done what a lot of other people have done where you keep sending your manuscripts and things like that,” Gottsleben said. “That’s why the first two books I self-published. I was in correspondence with this gal for something else and it came about that I had wanted to write a third book so it kind of worked its way into that. It kind of just fell in my lap.”

In seeking to publish her first two books, Gottsleben said it took quite some effort.

“I definitely consulted people like how do you do this but I also felt like this world of authors didn’t really like to share how they did it,” Gottsleben said. “So it was me doing a lot of googling. There are pluses and minuses of both self-publishing and publishing. I don’t know which is better, but it’s a nice experience to try both.”

Working with a professional publisher means giving up some control in how the book turns out, according to Gottsleben.

“With my first kids’ book I knew the guy and asked the illustrator, but with this book I don’t even know the illustrator,” Gottsleben said. “They just picked one. I’ve never talked to her. The only thing I said was the type of illustrations that I wanted. I didn’t really want the cartoon-y look. I gave them some things on how I was hoping the images would look but other than that I didn’t really have any say on who the illustrator was or anything.”

Though that aspect of the book was not within her control, Gottsleben was pleased with the outcome.

“I wanted the girl to kind of look like me because it was my name and it was kind of a take on me being in dance, but it didn’t have to be identical,” Gottsleben said. “I was really happy with how the illustrations turned out. There was definitely some stress with that because your name is attached to it, but it’s out of your hands and I didn’t know how it was going to look, but it worked out.”

Gottsleben also said she does not know how well “Kendra’s Perfect Dance Routine” is selling because the orders do not go directly through her as they do for her self-published works.

Gottsleben has ordered around 1,500 copies of her first book which she personally sends out when they are purchased over Amazon, though the number sold doesn’t matter as much to her.

“Never in the world when I was a kid would I have thought I would write three books,” Gottsleben said. “What’s been fun is hearing, you hope people like it, what people like about it. One of the best compliments that I’ve heard several times from different types of people with my first book is when people read it and they know me; they said it’s like they’re sitting there talking to me. I don’t know if that’s a good thing or a bad thing, but to me that’s a good thing. I don’t write academia. So when someone says it sounds like I’m sitting there talking to you, I think that’s pretty cool.”

Gottsleben said she recently got a compliment from a co-worker who said he reads “Kendra’s Perfect Dance Routine” to his little girls three to four times a week.

“On the back of the book there’s the ‘About the Author’ and there’s a picture of me younger and a picture of me now,” Gottsleben said. “He said, ‘My little girls they say this is when Kendra was younger and this is what Kendra looks like now.’ In a different way, I feel like that’s teaching these little girls that I’m little but that doesn’t mean that I’m five. Even though I’m little, I’m still accomplishing things.

“Going back to why I wrote it, it was part of seeing that kids are really hungry for these types of books explaining the differences we have,” Gottsleben continued. “One aspect I’ve always tried to do with my kids’ books is kind of asking questions so little kids can learn a little bit from it like what makes you unique and what makes you different. The sooner we all know who we are with our strengths and weaknesses I feel like the better off we are.”

Though not currently working on another book, Gottsleben said she definitely has more ideas.

“There isn’t a ton of books that represent those of us with disabilities or a rare disease,” Gottsleben said. “I feel like we need more representation. So, yes, I would like to write some more.”

Gottsleben wants to wait to see how well the professional publishing experience plays out before she decides if she wants to self or professional publish again.

“Kind of pondering because now I have experience in both and see how it comes out,” Gottsleben said. “It will be interesting to figure that out.”

Whatever the method, Gottsleben wants to continue to share her message of optimism, empowerment and normalization of differences.

“It’s a way for little kids or young kids who don’t have a disability to see it mainstreamed like it’s not a big deal that they have a classmate who is in a wheelchair or has a classmate that is missing a limb or that kind of thing,” Gottsleben said. “Then it’s no big deal. They just accomplish their goal or whatever they’re working on. They might just accomplish it a little different due to some of the limitations they might have.”

Gottsleben remembers a book she enjoyed as a child attending St. Agnes in Vermillion.

“Every birthday you got to go to the library and pick out a book and it was like your birthday book,” Gottsleben said. “They put in a little thing in that book saying, this is so and so’s birthday book. One of the books, I can’t remember how old I was, but it was called “Tell Me Again About the Night I Was Born.” When you’re reading the book you think it’s the normal story of mom going to the hospital because mom is in labor, but at the end of the book you realize it’s about being adopted because the baby is not in the mother’s stomach.”

Normalizing an experience that not every child has experienced inspires Gottsleben.

“I love the book even though I wasn’t adopted,” Gottsleben said. “That kind of thing; helping kids realize a different way of life.”

Though Gottsleben said she has seen more and more mainstreamed disabilities in the media, there is always a need for more.

“I feel like that as society is going forward, the more books, the more commercials, the more videos of having someone with Down Syndrome or someone in a wheelchair or autism; helping that become mainstream will help the whole society not think it’s that big of a deal,” Gottsleben said.

Gottsleben hopes to help and encourage everyone, not just those affected by disability and disease.

“I have several more obstacles but it doesn’t mean somebody who’s sitting next to me who doesn’t look like they have a disability doesn’t have obstacles,” Gottsleben said. “We all do. Nobody gets out scot-free. Because of the surgeries and just the thoughts and feelings you have, writing for me is an outlet. Some of it I’ve shared, some of it I don’t, you just write. It’s always been something that has helped me.”

Though Gottsleben has many obstacles, she also recognizes her own strengths and plans to utilize them to the best of her ability.

“I feel like one thing that I would say I’m proud of is even though I don’t know what it’s like to have every disability, experience of being adopted or all those different life circumstances, I do feel like I’m pretty good at empathy,” Gottsleben said. “I’m able to kind of understand or feel like I can help and that’s one of my strongest suits. The more awareness I can provide, I feel like maybe that’s my purpose.”

Though Gottsleben has her down days like everyone, she says she tries not to focus on the obstacles.

“With the world today, there’s a lot of negativity with a lot of things,” Gottsleben said. “I just really want a lot of people to understand with negativity, with obstacles or with the hurdles that we have in life there’s a lot of blessings and there’s a lot of positive. That doesn’t mean every day is hunky-dory or rainbows or sunshine but look for the things you’ve been blessed with because living in a negative world is sad.”

Gottsleben herself feels very fortunate for many amazing opportunities in her life.

Besides becoming an author she also advocates for those with disabilities through both her professional career and other endeavors such as modeling Tommy Hilfiger Adaptive on a runway show.

“It was just an opportunity that came and I took it,” Gottsleben said. “I’ve been very blessed with that and if I can help others pursuing their dreams and give them hope with a book or with something that I’ve said then I feel like I’ve done well.”

Gottsleben said she’s also able to help others through her position as marketing communications specialist for the Sanford School of Medicine for the University of South Dakota, based in Sioux Falls.

In October, Gottsleben will celebrate 10 years in that position.

“We offer training, technical assistance, research and educational resources for people with disabilities, families, healthcare providers and educators,” Gottsleben said. “So we kind of touch on a lot of different audiences trying to help families, educators and individuals with disabilities get trainings and resources and learn how to be more self-determined.”

Gottsleben said she gets all the trainings and conferences out marketing-wise, running the center’s social media and emails.

Gottsleben also speaks to students with disabilities regarding self-advocacy and resources after graduation as well as to first-year medical students about disability etiquette.

“The two things is always ask before you automatically help them or do something and just treat them like you would treat anybody else,” Gottsleben said when asked about the most important aspects of disability etiquette. “For example, there are some people with disabilities that don’t want people to hold a door or if someone drops a pencil they don’t want the person to automatically pick up a pencil when it’s dropped. Say ‘can I help you?’ then don’t be offended when the answer is ‘no, I’m good.’”

According to Gottsleben, adults need to be aware of little words and gestures they use towards those with disabilities especially around children.

“I think sometimes people don’t realize that kids are really very, very smart when they’re young,” Gottsleben said. “With little things that parents might not realize they’re doing, kids will pick up on. When I’m in the mall and a little kid asks a question and a parent is embarrassed and they pull the kid away they don’t realize that’s giving a connotation to this child that you shouldn’t talk to these people because they’re different. Kids are curious and the way we learn as individuals but especially as little kids is by asking questions.”

Though Gottsleben doesn’t handle as much hands-on work as the Center’s trainers do, she enjoys that in her work she is helping the greater good.

“Even though I’m sitting behind the computer, I enjoy knowing that I’m getting the information out to the people that need to learn more of what we’re doing and how we’re doing it and trying to make our knowledge as accessible as possible and getting it to the right people,” she said.

Gottsleben said after her college graduation, many employers turned her down because of her physical limitations.

“I’m honored and feel so fortunate for the executive director at the time I was hired that she took a chance on me,” Gottsleben said. “She said ‘I didn’t take a chance on you, I saw your abilities.’ There are a lot of people with disabilities that are having a hard time finding jobs because people aren’t seeing the possibilities, they’re seeing more of the obstacles.”

Gottsleben said being the marketing specialist at the center is the perfect fit for her life experiences.

“My parents were always in the education field,” Gottsleben said. “Having a disability and rare disease, I kind of grew up in that hospital world with doctors and surgeries so working in the med school I get both. We have the academia of educating and I’m also in the medical world where I’ve pretty much been my whole life so it’s been a pretty good experience and I feel very fortunate.

“You’ve got to trust and believe and hope things will work out,” Gottsleben continued. “There have been times where I get stressed at work. I get stressed like everybody else, but overall I’ve been very blessed with a very good job.”

Gottsleben said her father was with the University of South Dakota for over 30 years so Vermillion and the university have always had a big spot in her heart.

“When I got my job here and I got my first USD email address I sent my dad an email,” Gottsleben said. “I’m like ‘hey, here’s my email’ and sent it to another coach who was one of my dad’s athletes and he’s like ‘It’s about time, you finally have the right email address.’”

Through her whole life, Gottsleben said she has felt support from those in Vermillion and has “fond memories of being a Yote.”

“I feel super blessed for being from the state of South Dakota, from Vermillion,” Gottsleben said. “What I love is Vermillion supports their own. They believe in their town; well, they believe in everybody. It’s a great place.”

Gottsleben plans on doing a book signing for “Kendra’s Perfect Dance Routine” in Vermillion once the weather improves.

“I still have a lot of people who have helped me get where I’m at today,” Gottsleben said. “I went to the middle school and high school, my dad taught at the U and my mom taught at St. Agnes. There are a lot of things that, even though I’m up here in Sioux Falls, I’m proud of being from Vermillion, South Dakota. I’m proud of being from the state of South Dakota. All of those experiences have impacted my writing and my views in life and where I’ve gotten to where I am today.”

“Kendra’s Perfect Dance Routine” can be found on the Amazon and Barnes and Noble websites. For updates on a future Vermillion book signing, visit Gottsleben’s website, and follow her social media channels.


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