Easy Read Summary: Opening the door to university health research

Easy Read Summary for Opening the door to university health research

File: Easy-Read_Opening-the-door.pdf

St. John, B., Hickey, E., Kastern, E., Russell, C., Russell, T., Mathy, A., Peterson,B., Wigington, D., Pellien, C., Caudill, A., Hladik, L., & Ausderau, K. K., (2022). Opening the door to university health research: Recommendations for increasing accessibility for individuals with intellectual disability. International Journal for Equity in Health, 21(1), 1-13. https://doi.org/10.1186/s12939-022-01730-4

Yeehaw, we went to Texas!

Cowboy boots, tacos, and sunshine, oh my! Some of our lab members went to San Antonio, Texas to attend the annual American Occupational Therapy Association conference. Our lab had five different presentations over the course of the week but still had plenty of time to explore the city.

White text explaining conference presentations on black background with group pictureMore text and group photos describing conference experiencesText captions with more AOTA conference experiences

Easy Read Article Summaries: Let’s Make Research Accessible!

Black magnifying glass over white background

What are Easy Read Article Summaries? The Easy Read Article Summary is a tool that was developed through stakeholder collaboration in our research lab. The goal of the summary is to make research articles easy to understand. Did you know that right now it takes 17 years for new research to become common clinical practice? Any way that we are able to make research more accessible for people to use is important.

 

The Easy Read Article Summary is a great tool that breaks down the important parts of a research article.

(1) What is the article title and who are the authors? It is important to list out the title of the article and all of the authors on the article at the top so it is easy to see.

(2) What are the key points? This section allows the reader to see the most important parts of the article in a quick bulleted list.

(3) What are important terms in the glossary? The glossary allows the author to provide important definitions that make the article easier to understand.

(4) Many articles list out their purpose statement or why this article matters. This statement can be helpful for explicitly showing  how this article contributes to the research on the topic.

(5) The research question is then listed out before describing important results. The final section talks about the implications of the findings, or how the results will be used.

 

The Easy Read Article Summary is one way to make research more accessible and easy to access. For more information on the Easy Read Article Summary or to see some past examples, click here.

Kayte Barton: Advocate for Change

Picture of Kayte on Special Olympics backround

Our research lab was able to interview one of our closest collaborators and co-researchers, Kayte Barton, of Minnesota. Check out Kayte’s interview with our research team and hear her talk all about all of her experiences with research and advocacy.

“I’m capable of speaking up for myself, but there’s others who cannot do that.  So as an advocate, that kind of has become my driving force.”

 

CLICK HERE to find a transcript of our interview with Kayte Barton.

Haley Waggoner: The Power of Language and Advocacy

Black and white photo of Haley smiling looking off screen

Hello everyone!  My name is Haley Waggoner and I am 31 years old.  I live in Lincoln, Nebraska, and I can proudly say that I am a gold medal winner in tennis from the 2018 USA Special Olympic Games.  This upcoming summer, I look forward to attending and competing in the 2022 USA Special Olympic Games in Orlando, Florida, and I can’t wait to make amazing memories in the presence of both my family and friends.  In addition to playing tennis in the Special Olympics, I enjoy competing in soccer, golf, and I plan to try basketball again this year.  When I am not playing sports for Special Olympics, you can find me hanging out with friends or baking, both at home and at my job, where I work for the Hy-Vee grocery store bakery. 

I am proud to speak about many of the Committees and Councils that I actively participate in, ones in which we advocate for Special Olympics athletes.  Currently, I serve on two Special Olympics committees, the Special Olympics USA Games Athlete Leadership Council and the Nebraska Special Olympics Athlete Input Council.  Within both of these groups, athletes are encouraged to give input and delegate with leaders to improve the Games, both statewide and at a national level.  I am the Chair of the USA Games council, and our motto is “Athlete-driven” – we strive to give ALL athletes the opportunity to speak and have a voice.  Through my involvement in both of these Councils, the other athletes and I are able to have a say in making the Games the best they can be.

Haley wearing pink sweater holding bill in Nebraska legislationAside from my active participation within Special Olympics committees, I have also worked in the past with my Nebraska State government in two different committees.  I have since retired from the Nebraska Youth Leadership Council and the Nebraska Developmental Disabilities Council after serving two terms.  Within the Youth Leadership Council, my peers and I helped not only each other, but all individuals with disabilities transition into higher-level education and/or the workplace.  The focus of this Council was to help young adults advocate for themselves as they moved into the next part of their lives.  On the Developmental Disabilities Council, my peers and I collaborated to pass bills and write grants to better advocate for individuals with disabilities.  One of my proudest moments was working with Nebraska Senator Colby Coash in 2013; together, we developed a bill to eliminate the “R” word from state statutes and change the wording to “intellectual disability”.  This was a pivotal and necessary step towards change in not only Nebraska, but for the entire nation.

Just as the state of Nebraska eliminated the “R” word from state documents, my aspiration is to remove the term “special needs” from our terminology and replace it with “individuals with disabilities”.  Why?  Because we are not “special”, we are more than just “special”, we are human.  “Special needs” is a fictional and meaningless term that was born out of ableism, which favors those who don’t have disabilities.  Ableism’s desire is to make accessibility and inclusion abnormal and rare, and my objective is to change this narrative for all individuals with disabilities.  This change will not be instant, however, it can be made possible with an emphasis on the collective change in daily language.

You may be asking yourself: How can I be involved in advocating for eliminating “special needs” from our language?  Well, there are several ways!  First and foremost, I encourage everyone to take a first step towards advocacy in our day-to-day conversations.  You can correct others if they use the wrong terminology when referencing someone with disabilities, and you can also educate them on the importance of changing their language.  Additionally, we can advocate for language changes at a higher level, like within state or federal legislation.  I motivate all who are able to send an email, make a phone call, or find an alternative method to communicate with our legislature to help contribute to major changes.  Each and every attempt to reach out to our government means that we are one step closer to writing new bills, or even changing the language in our public education system, which would have an enormous impact on generations to come.

Black and white photo of Haley smiling looking off screenFinally, and one that I feel very strongly about, is advocating for change over the world’s most growing influence, SOCIAL MEDIA!  Gaining inspiration from popular Instagram accounts such as “@Ableismistrash” and “@DisabilityReframed”, I have taken to my own social media as a way to educate and inspire change in our world.  Whether it is a simple “like” or even reposting content, social media allows movements to spread faster than any other forms of communication.  I hope that all of you can visit and interact with one of these two well-known accounts, or even follow my own “@HKWaggoner”.  Known as a form of “digital advocacy”, there are so many resources and opportunities to change the terminology of “special needs” to “disabilities” over several social media outlets.

I hope that this blog post has educated and motivated all of you and helped you to understand that change needs to happen.  I look forward to interacting with you further over social media and I will hopefully see some of you in Orlando this summer.  Thanks for reading!

New article: Collaborative health advocacy for health promotion for individuals with intellectual and developmental disabilities

AOTA logo in yellow, orange, purple, green font

The American Occupational Therapy Association (AOTA) has several publications to show all of the research being done across the country to support occupational therapy research and practice. Our article, “Collaborative health advocacy for health promotion for individuals with intellectual and developmental disabilities”, was recently published in the Developmental Disabilities Special Interest Section (SIS) magazine. The SIS Quarterly Practice Connections come out every three months and are meant to connect research and clinical practice, “by applying research and other evidence to occupation-centered practice” (AOTA, 2022). 

Our article looks at how occupational therapists can collaborate with self-advocates to focus on activities to improve health outcomes. There are four five strategies for health promotion collaboration for OTs and self-advocates, including: (1) setting up health promotion activities in the treatment process; (2) using health narratives or other advocacy tools to use with other healthcare providers; (3) advocating for change at a population or systems-level, like legislation changes; (4) working with community organizations or groups that focus on health; (5) focusing on opportunities for accessible knowledge translation, like inclusive conferences and accessible research documents. Our lab uses Easy Read Summaries for all of our articles that talk about the main points of the article in one document. To see our Easy Read Summary for this article, click here

A huge thank you to all of our co-authors, especially Cindy and Edward for sharing their stories and all the ways they are working to improve health for themselves and others. 

To read our full article, click here

 

Allison wearing white Wisconsin hat with Cinderella sculptureAllison Doerpinghaus, OTD, OTR/L, is a PhD Student for the Department of Kinesiology, Occupational Therapy Program at the University of Wisconsin at Madison. 

 

 

Libby in front of green backgroundLibby Hladik, MSOT, OTR/L, is a PhD student for the Department of Kinesiology, Occupational Therapy Program at the University of Wisconsin at Madison.

 

 

Emily wearing black shirt and shorts sitting by waterfallEmily Satterlund, BS, is a research associate for the Department of Kinesiology, Occupational Therapy Program at the University of Wisconsin at Madison.

 

 

Cindy wearing pink floral shirt in front of brick backgroundCindy Bentley is Executive Director for People First in Milwaukee, Wisconsin. 

 

 

 

Edward wearing red polo and medal in front of red Special Olympics Wisconsin backgroundEdward Kastern, BA, is a self-advocate and Media Production Professional in Oshkosh, WI.

 

 

 

Brittany wearing blue shirt in front of treeBrittany St. John, MSOT, MPH, OTR/L, is a PhD student for the Department of Kinesiology, Occupational Therapy Program at the University of Wisconsin at Madison. 

 

 

Karla Ausderau in front of White backgroundKarla K. Ausderau, PhD, OTR/L, is an associate professor for the Department of Kinesiology, Occupational Therapy Program, and for the Waisman Center at the University of Wisconsin at Madison.

Sadler Bell: Using My Vlog to Even Out the Playing Field for All Athletes

Sadler headshot in front of green screen

Hey everyone, my name is Sadler Bell and I am 37 years old.  I live in Madison, and I am involved with three nonprofit organizations in Dane County.  Included in these nonprofits are: the Madison Area Down Syndrome Society (MADSS), Gigi’s Playhouse, and LOV Inc., Living Our Visions Inclusively.  I take a lot of pride in my advocacy work.  When I am not working or helping out with these organizations, you can find me watching sports.  I enjoy watching the Packers and the Brewers; however, none of these teams are my favorite.  Growing up in Alabama, I will always root for the University of Alabama (Roll Tide!).  I met Olympic Team USA Curler Matt Hamilton at a Gigi’s Playhouse event last summer.  Matt, who lives just outside of Madison, is a Team USA gold medalist, and both he and his sister Becca were the 2017 Male and Female Curling Athletes of the year.

When I’m not watching sports, I enjoy biking to and from work (weather permitting) and cooking at home where I live independently.  

Years ago, I joined Special Olympics, in which I played softball and bowling.  During my time participating in Special Olympics, I made many friends and built lifelong relationships.  It didn’t take long for me to see how passionate all of the athletes were when competing, and just how extensive the Special Olympics community truly is!  Despite the passion that was displayed and the global outreach that Special Olympics holds, I have never seen major sports networks covering Special Olympics the same as they do for college and professional sports leagues.  As an athlete myself, it is virtually impossible for athletes with disabilities to be in the same realm as other athletes.  When I came to this realization, I knew I had to do something about it.  From that point on, I coined a motto that I still live by to this day: “Not all Special Olympics athletes have a voice, and I want the opportunity to give them a voice!”

Currently, I am in the process of launching my very own video blog, commonly referred to as a vlog, to advocate for athletes with disabilities.  I see myself turning this into a career, and I hope to have a lasting impact on everyone who is with me along the way.  Each and every day, professional, collegiate, Olympic, and Paralympic athletes are signing new deals and endorsements to be compensated for playing the sports that they love.  Do you know the one group that is missing?  Special Olympic athletes.  My lifelong goal for this vlog is to allow these athletes with disabilities, who hold the same passion for their sports that all other athletes do, to be on an even playing field.  I understand that it will not be an easy road, but as I have throughout my lifetime, I will persevere and stay the course.

As I continue to build and expand my vlog, I am planning on connecting with major sports teams and athletes to get them on board!  There is no better way to help build the bridge between Special Olympics athletes and professional sports teams, and in the early months of 2022, I will be reaching out to teams such as the Brewers, Bucks, and Packers.  On top of this, I plan on interviewing both Special Olympics AND professional/collegiate athletes to find a way to even the playing field!  Matt and Becca Hamilton, who have been so resourceful and supportive to the vlog, will be involved in the earlier vlog posts and will help kickstart the expansion of my advocacy.  Additionally, if everything works out, I plan on traveling to Orlando, Florida in June of 2022 to the USA Special Olympic Games.  While in Orlando, I will interview the athletes, coaches, and hopefully some of the representatives of the USA Special Olympics!

In the next year, I hope to apply for grants and receive external funding–this will go a long way in providing even more opportunities for the vlog.  I would absolutely love for all of you reading to reach out, send feedback, and let me know if you want to help me provide ALL athletes with the same opportunities.  I cannot wait to see the spread of my movement, and I hope I can motivate other people to advocate for what they believe in.  All one needs is a purpose, a goal of what they want to accomplish, and a drive to continue marching forward.  If you have all three, you can push yourself and achieve anything you put your mind to.  Thank you for reading my blog post, and I encourage everyone to keep a close eye on my vlog, as there are many exciting things in the future!

Here’s a sneak peak of my first blog post:

 

John’s Crazy Socks and the Special Olympics: What I Learned From Special Olympics to Build My Business

John’s Crazy Socks and the Special Olympics

We often say that without the Special Olympics, there would be no John’s Crazy Socks. The Special Olympics has had a profound impact on John’s development and character and it is hard to imagine that John would ever have been able to start his own business if not for the skills and life lessons he learned from competing as a Special Olympics athlete.

John puts it more simply, saying, “I Love the Special Olympics.”

Don’t Tell Me that It’s Good For Me, Special Olympics is Fun

John started playing Special Olympics soccer with the Huntington Boys Club when he was five years old. It sometimes seemed that the ball was bigger than him. John didn’t join the soccer team because of the wonderful virtues it would instill in him; John played soccer for one basic reason: it was fun.

John watched his older brothers compete in various sports and would go to their games to cheer for them. Like many younger siblings, John wanted to do what his older brothers did. If they could play sports, why couldn’t he?

When he learned about the opportunity to play soccer, John jumped at the chance. He got to run around on the field and meet new people. He would trip over the ball or trip over his own feet, but he had coaches and teammates helping him up and showing him what to do. He loved everything about it: putting on his uniform, lining up for drills, showing the coaches that he could do what they taught him.

Twenty years later, John is still playing for the same soccer team and the same coaches. Along the way, John has added other sports, so now he competes in basketball, track and field and snowshoe. For years, he played floor hockey and would go bowling, but those sports fell off and he concentrates on the sports he likes the most.

Ask John about the Special Olympics and he will tell you, “I love it. I love being with my teammates. I love running. I love going to meets. I have so much fun.”

There’s So Much More to the Special Olympics

For ten years now, John has been competing in Special Olympics snowshoe races. His coach, Linda Costello-Roth, recruited John and his teammates to try this new sport. It involves strapping snowshoes to your feet and racing. The shortest races are 25 meters and the longest 800 meters. John’s team, the Huntington Blue Devils, is based in Huntington, New York, a town on Long Island about 35 miles outside New York City. The team competes in two events each year. At the end of January, they travel upstate to a meet at West Mountain and in mid-February, they compete in the New York State Games, usually in an upstate location.

This team starts training in the summer on the beach and in their coach’s pool. Think about that for a moment: they have only two meets and yet they start training six months earlier. They can focus on a long team goal and have the discipline to put in the work and effort to get better.

And they do not simply go out and run around. Their coach puts them through a demanding work out – short sprints, long runs, practicing starts, running over a small hill – all designed to help them compete better. There are times when they are tired and their teammates and coach pick them up. There are times when they lag, and their teammates and coach exhort them to push harder. They fall down – and if they are on the beach that may mean getting a mouthful of sand.

When the Blue Devils show up at a meet, they compete in individual events. John will usually run the 50 and the 100 meter, and one relay. The relay is always the biggest race for them because they are running for their teammates. Compete they do: they run hard and each wants that gold medal. Their work often pays off with a shiny medal, but not always. And these athletes learn the joy of victory and the bitterness of defeat.

Over the years, John has gone to the medal ceremony dozens of times. He has stood on the gold medal platform and stood on the side receiving not a medal, but a ribbon. And here is what the Special Olympics has taught him: no matter if he is receiving a gold medal or a ribbon, John thanks the presenter and shakes hands with his competitors, congratulating them on their race.

John’s teammate, Liam, ran so well that he was was invited to join the national team and compete in the World Games in Austria. No one was happier for Liam than his teammates.

Now think about what I described: focusing on a long term goal, discipline, teamwork, the ability to be coached, the ability to persist even after a defeat, an intense focus on performance and sportsmanship.  Aren’t those qualities that any employer would seek in an employee? Aren’t those traits that would serve an entrepreneur well?

It’s the Effort, Not the Natural Talent

A hallmark of the Special Olympics is the way they group athletes with similar athletic results. What does that mean?  John may like to compete in races of all sorts, but he is not naturally a fast runner. The Cronin men have run marathons, but sprints are not our strength and so it is with John. But Special Olympics does not pit John against the fastest runners. It matches him with runners in his age group with similar outcomes. This approach leads to even fiercer competition.

And make no mistake, these athletes compete. Go to a track meet and watch John running down the track in a 100 meter race: he is giving his all, determined to win that race, you can see it is his eyes, in the way he pumps his arms, in the way he churns his legs. It is a sight to behold.

He does not always win. In fact, he rarely wins the gold in a sprint, but that does not diminish his effort. And the Special Olympics have helped him to understand that in the end, he is racing against himself, trying to do the best job he can on the basketball court, the soccer pitch, the track or the snowshoe course. When he finishes a competition, he feels good as long as he did his best.

The More You Give, the Better Off You Are

John offers two keys to happiness: do for others and have gratitude. John applies this to his participation in the Special Olympics. Long before he had his business, John wanted to show his gratitude for all the Special Olympics gives him. For the past eight years, he has raised money for Special Olympics by doing a polar plunge. Now that’s commitment.

One time, while joining other athletes and their families meet with members of Congress urging the representatives to vote in favor of a grant for the Special Olympics, John said, “All we are asking you to do is vote yes, I jump in freezing water for the Special Olympics.”

John was also invited to serve on the Athlete Leadership Council with the New York State Special Olympics. This group of athletes provides feedback to the leadership of the State program and share information to their fellow athletes. John views his role on the leadership council as a great honor and it is another way that the Special Olympics is helping John grow as a person.

What’s This Got To Do with Starting and Running a Business?

How many of us have had an idea for a business? How many of us have said, this would be a good idea? And how many have let it drop just like that?

That’s not what John did. He had an idea and immediately set to work to make it a reality. It is the same approach he had when he started playing soccer or took up snowshoeing.  He had gained confidence from the Special Olympics to know that if he wanted something, if he was able to work at it, he could succeed.

Taking the entrepreneurial path is not for the faint-hearted. Success is not guaranteed – most business fail within three years of starting – and there are many failures and hard times on the way to success. An athlete who starts training in the summer for a winter snowshoe meet knows all about commitment, understands what it means to work for a goal and purpose. And a basketball player who has his shot blocked by a much taller player, but knows to immediately fall back on defense or a runner who gives it his all only to have another runner pass him in the final meters of a race, that athlete understands failure and how to get up and keep going.

When starting a business, there is so much to learn, so many new challenges and new skills you need just to get going. An athlete who first confronted a soccer ball big enough to knock him down who now knows how to run the field, how to space, how to make passes to teammates, that is an athlete who knows the importance of continually learning and how it is possible to learn.

One can see this habit of mind in John’s public speaking. This is a young man who for the first several years of his life could barely speak. He learned American sign langue to communicate and used an assistive communication device. Now he can stand in front of a corporate audience of 5,000 people and wow them.  He had the confidence that comes with performing in the Special Olympics. He knew to take coaching from his speech teacher at Huntington High School, Patricia Klee, and from his father and business partner. He pays attention to other speakers and learns from each appearance. He practices and works to improve.

As any business leader can tell you, no one can do this alone, it takes a team to succeed. Our schools often emphasize individual work, but the Special Olympics are all about teamwork. The Special Olympic athletes understand how to trust and rely on teammates and how to earn a teammates’ trust. A Special Olympic athlete understands that the whole soccer team is much more powerful than any collection of individual players.

In short, it is hard to see how John would have the confidence, the commitment, the perseverance and the ability to overcome defeats in his business if he had not participated in the Special Olympics.

Giving Back

John knows how much he has benefited from participating in the Special Olympics. In keeping with his approach in life, John demonstrates his gratitude by giving back. From the beginning, John has pledged five percent of profits from John’s Crazy Socks to the Special Olympics. He wants the Special Olympics to share in any benefits he receives.

We have gone on to create special products that celebrate the Special Olympics and raise money for the Special Olympics including our Shark Socks, made to honor the Commack Sharks where John plays basketball and runs track and field, and Polar Plunge Socks. In addition, we donate 5 percent of the sale from the Sock of the Month Club to the Special Olympics.

Here is a really cool fact; John, a Special Olympic athlete, has now raised over $100,000 for the Special Olympics. Could there be any clearer sign of how much the Special Olympic has done for John and his affection for the Special Olympics?

Layla Crehan, 17 year-old Athlete, Shares Her Story on Her Crossing for Cystic Fibrosis Race!

Layla on orange stand up paddleboard in water with greenery in background

Hi, my name is Layla. My first sport in Special Olympics was swimming when I was 10-years-old. Swimming was a huge part of my life. Before that, my life was blank and I didn’t know what I could do with my life. I was just thinking about normal stuff like drawing and school. However, my mom wanted me to get involved in something big that would benefit me in a healthy way and to help me socialize. That’s when she found swimming in Special Olympics Florida. The first time swimming for Special Olympics didn’t go so well because I was anxious and frustrated since the other kids seemed faster than me; but my mom told me that it was just the first day and that after time I would get better with hard work and dedication.

I’ve been in Special Olympics for 6 years and I’m currently involved in swimming, paddle boarding, alpine skiing, basketball, track and field, open water swimming, and surfing. I’ll be starting volleyball in the Spring!

I met my coach, Victoria Burgess, when I was 12 years old. She was my paddle boarding coach at Special Olympics and she is still coaching me today as well as competed with me. In 2018, Victoria became the Guinness World Record holder for being the first female soloist to cross from Havana to the Key West on a paddleboard as well as the fastest. This inspired me to do a crossing of my own.

I wanted to do a crossing that focused on raising money for cystic fibrosis. The reason I wanted to focus on that was because of my friend, Hannah. I met Hannah when I was 10 years old and she has CF. I’ve watched her live her life with CF every day and I wanted to do something for her to show her how much her life means to me. I wanted to show her how much I cared for her by dedicating so much time, energy, and love in preparing for the crossing in her name. I want to help find a cure for her and everyone in the world who has cystic fibrosis and the crossing was one way for me to support that.

The crossing was on June 27, 2021, starting at 12:45 A.M. Some of the things I did every day to train to get ready for the crossing was 100 pushups, 100 Russian twists with a 10 lb medicine ball, 100 squats, balance board workouts, and paddleboarding at least 4 days a week for a total of about 2,000 miles. If I wasn’t paddling or doing muscle training, I was running 5ks around the house along with skateboarding, rollerblading, and cycling. I did this to build endurance in my legs and lungs. I mostly did this by myself with some help from my coaches. Most of my training was done during the pandemic. Closer to the Crossing, I did two paddles; an 8 hour and a 12 hour to test equipment and nutrition. We did this to figure out what to eat and drink and how much I needed eat and drink to keep up my energy. We decided on 3 air fried potato wedges, half of a coconut almond Kind bar, a few gummy life savers and a ½ peanut butter bar. To drink I started with 2 liters of water, then switched to water mixed with Gatorade. After seven hours, the Gatorade made my stomach hurt. So when we did the 12 hours, we used Propel Kiwi Strawberry. We started with 2 liters of water, then 2 liters of Propel mix and then water again. I didn’t experience any stomach aches.

On June 23, 2021, my journey for the Crossing started with my first ever boat ride! I met my captain and his wife, Captain Pancake, in Port St. Lucie. We spent the night at their house and left in the morning with 3 other women who were relaying on a canoe.  The boat ride over was very bumpy, but I enjoyed every second of it. It took us about six hours to get to the beautiful island of Bimini! This was my first time ever leaving my country. After getting through customs, we checked into our Air BNB at the marina, and we settled in. The 5 of us got along very well! We got to meet so many people that work for Piper’s Angel’s Foundation and we got all of our gear, shirts, hats, sunscreen, tons of stuff. Then it was off to sleep.

The next morning, I was feeling a bit tired and a little nervous.  I decided to do yoga in my room and then I went for a morning paddle on the bluest most beautiful water I had ever seen! My mom met me at the shore and I paddled over and we swam in the ocean a bit and it was amazing. Later that night, we went out to the pool and all of the paddlers got together for a potluck dinner and told stories about paddling adventures! I got to meet so many cool people and see some old friends! My coach, Paolo, was there and I got to meet Johnny Puakea for the first time! He owns Puakea Designs and I am an ambassador for them! He is very nice!

The next day the captain came to get us and took us to an old shipwreck, the SS Sapona!  I snorkeled for the first time and then climbed a rusty ladder to the top of the shipwreck and jumped off! Twice! It was so much fun! Then that night we went over to the North Island of Bimini and had dinner with all of the paddlers! We ate outside and got to eat amazing Bahamian food, like fish and jerk chicken! I also collected tons of shells, sharks’ teeth, and beautiful sea glass.

Saturday morning was the day of the Crossing. I felt nervous and excited, but I was ready. I was well rested, hydrated, and well fed. I went to the beach to unwind, collected more sharks’ teeth, and swam in the ocean. Then it was time for the rose ceremony.  Everybody got on their board and paddled out to the spot and got in a big circle. The boats surrounded us to protect us from other boats coming through and to keep us all together. Travis, Piper’s dad, talks to everyone about why we were there and to think about who we knew that had Cystic Fibrosis and with all of our might, scream their name and throw our rose into the air and just send it into the universe! It was the most amazing moment! There was a beautiful rainbow!

Later that night we had to go and get our night gear, a night vest, a whistle, my GPS, and my ankle monitor! We got our paddler numbers on our hands and were ready to go.  I went back to the room and rested as much as I could while my mom packed everything up!  It was almost time to leave this beautiful place.

Next, all 140 paddlers gathered on the beach and got ready to launch in 4 different groups.  My group launched at 12:45 AM!  They were blasting AC/DC’s Thunderstruck from the speakers!  I was so pumped up when me and my group launched onto the water!  There was a full moon, and the water was very calm!  There was a nice current that was pushing me!  I paddled to the boat where my mom was waiting, and we took off!  I was ready in every way to make it the 80 miles until things took a turn for the worse.  No one expected the water to be rough, but it WAS!  We had 4-to-six-foot waves coming from behind us and rogue 8-foot waves coming from the side…in the DARK!  I was getting thrown around and had a hard time telling which direction the waves were coming from.  Then my stomach started to hurt.  I couldn’t eat or drink anything, but I pushed myself harder than I ever had before for 3 hours! I didn’t have training previous for this situation. I had minor training at Special Olympics with about 2 miles, but I have done 12-mile river races, mostly training herself.

My mom knew that I couldn’t keep going like this unless I drank something, so I tried but I immediately threw it up and fell off my board.  My mom told me to come in so she could check me. This is the scary part because the ocean was so wavy, it was very hard for them to get me onto the boat! A huge wave came and knocked me down between the boat and the board, and I almost got sucked under the boat. They pulled me up and my mom checked me out.  She made the call at that point that I was not going back on the water because it was too dangerous. Now a lot of us were getting seasick because the boat was stopped and rocking like crazy.

It turned out that out of 140 people, only 20 finished the 80 miles.  The conditions were really rough, and they ended up pulling a lot of people off the water and ending the crossing early. A captain told some people that it was too dangerous to go out into the water, some people only got to paddleboard for 5 miles. My board was damaged, and I still don’t have it back two and a half months later!

When people ask me about the crossing this is what I tell them. “Bimini was the most amazing adventure of my life! My dream was to participate in the Crossing for Cystic Fibrosis and my dream came true. My plan was to finish the 80 miles, but the sea had other plans for me.” I am so proud of everything I did to get ready and prepare for that journey. I am so proud of my 3 challenging and beautiful hours I got to paddle! The crossing was the best time I have had. I was first super apologetic, but I had to acknowledge that my safety was my priority. I am still proud that I showed up and I am so proud to have raised money for a cause that is so important to me. I have been training for 1.5 years for it so I have been focusing on the Crossing for so long. I want people to know that one thing that I learned is, you can put your heart and soul into something, work and train to be ready and still not get what you wanted. But don’t give up!  I am proud to say I WILL be doing the Crossing again! I want to inspire other girls by moving on and showing that you just must keep going.

I have been busy for so long, so I am experiencing Crossing grief – what am I going to do now? Well, I am starting to set up new goals and will be busy again for the next 10 months. I have eight races set up between now and March. Now, I will be representing Team Florida in the Special Olympic USA Games for 2022 for Surfing in June. It is a big deal and I can’t wait to represent! I will be participating in a training camp in March, and if I prove that I am independent enough since I am so young, I hope to one day be competing in World Games for swimming or Alpine skiing! Just remember one thing, no dream is too small, no dream is too big! If your heart needs it, make it happen!

Tkia Harris Shares Her Experiences in the READI Program and How to be Healthy

Tkia smiling wearing blue shirt that says, "I am a fit athlete"

Hi, my name is Tkia Harris. I am in Special Olympics for Texas, and I used to be in Special Olympics for Florida. I have been an athlete for Special Olympics for three years. The sports I play are basketball, volleyball, and bowling, and I hope to join Track & Field and tennis someday, but it gets so hot in Texas. Through Special Olympics, I have learned valuable lessons, which is what I enjoy most about this program. For instance, when I rebound a ball, I must jump to get the ball and try shooting it. When I dribble the ball, I am allowed to switch hands, but I just dribble with the same hand. I have other hobbies. I enjoy doing diamond art where you are given a picture, beads (diamonds), and a pen. You use the pen to pick up the diamonds and place them on the picture. I also enjoy running, exercising, doing puzzles, painting, and socializing in activities.

I became interested in research the past year because my friend Natalie invited me to do some research projects with her. I appreciate her for introducing me to research because I didn’t think it would be fun. I thought it would be some school class. I had the opportunity to share my ideas and thoughts with other athletes from Special Olympics Florida. I also wrote my health story and share it with our group. I included things that I do to stay healthy like drinking water and running. In one of the modules, we split up into groups where each group created their own research question, and then we had to find answers or information for our question. My research question focused on things to eat before and after your workouts. I learned through researching that a healthy snack you can eat is peanut butter protein balls. I also learned that you need to wait 30 minutes to an hour before working out. I learned that research is important because you learn new information and ideas and then apply them to my life.

Through research, I have learned new ways to continue to stay active. I play a lot of basketball, take a lot of walks (about 2-3 miles), run on any tracks that are around me, and drink lots of water. I have a huge cup that holds 28 ounces of water, and I drink that once a day or 6 bottles of water each day. Not only do I focus on my physical health, but I support my mental health as well. As I mentioned before, I like to do puzzles and diamond art. It was hard to stay active during the pandemic. So, I tried to do activities in my home, participate in Special Olympics online, walk my dog, and run around the track three times to build up running skills. If you are looking for exercises to do at home, you can do high knees, side planks, squats, jumping jacks, running in place, and my favorite, butterfly, which is a yoga pose that stretches your hips and legs. If you are a beginner in working out, start off small, gentle, and easy that works best for you. Once you get used to the level of difficulty, then make it harder so then you can feel it. I would like everyone to try being active and try the exercises that I recommended. Thank you for reading my blog post!