Life’s a Journey With CP and Me

Hi Everyone!

Katy FettersKaty here, a local college student who is always writing, sharing, and learning about cerebral palsy since I also have CP!

I just recently participated in the World CP Challenge, a global, month-long fundraiser that works to raise awareness and educate participants about CP. In addition, participants dedicate this entire month to their own health and fitness: in teams of four, we climb seven virtual mountains all over world with a pedometer step count! As the leader of Team TeenCP, I am happy to say we completed our second year doing the challenge. This year was more successful for us with steps, but fundraising was a bit difficult due to the competitive nature of the challenge in my community! (What a good problem to have, though.)

While I can’t do as much running and walking as I used to, what is great about this fundraiser is that you can still gain “steps” for your team no matter the activity! Biking became my main mode of exercise for the challenge and I always felt so great after logging in my steps for my team to see our progress! Another plus, is that the CP CP_Challenge_logoChallenge really allowed me to feel more in-tune with my physical health and I have been able to keep up with consistent cardio and strength training because I feel so great after a hard work out! I hope others who did the challenge feel the same way. What I also loved about this year was that the challenge ended on World CP Day (Oct. 2), so as a great send off, I was able to speak toward some young adults that I know who have CP and urge them to share something about their own experience with having a physical disability. What an empowering movement I get to be a part of! Team TeenCP will look forward to a stronger, better fundraiser for the fall of 2014.

My parents, Paul and Carolyn Fetters, owners of The Training Spot in Huntington Beach have supported UCP-OC for quite some time now, and this is the second World CP Challenge that they, their personal trainers and committed clients have also participated in the fundraiser. A gym or fitness center is a great environment to host something like the World CP Challenge because it encourages members and clients to get active for such a great cause (and something so personal to our family.) Overall, we are happy to be a part of the challenge in the coming years because of its positive message, results, and awareness for the local community and UCP-OC. Thanks UCP National for bringing the World CP Challenge to the United States!

Until next time,
Katy

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Life’s a Journey with CP and Me

Hi Everyone at UCP-OC!katyfd-225x300
Katy here—I just returned from UCP-OC’s bike camp at Soka University in Aliso Viejo (where I am going into my 3rd year for my BA!) For those of you who are unfamiliar with the week-long camp, it is put on by iCanShine, a national organization that provides quality learning opportunities in recreational activities for individuals with disabilities who are determined to learn how to ride a bicycle. The camp is run by UCP-OC and Down Syndrome Association of Orange County and both organizations are very grateful for the support of the Pujols Family Foundation who sponsored the camp.
With the help of some amazing volunteers, the kids spend five days on adaptive bikes in the hope that they will be able to ride a two-wheel bike without any assistance! Having gone on the final day of camp, it was so awesome for me to witness these kids getting out there on two-wheeled bikes for one final ride with confidence with smiles on their faces! I was very proud of these kids with knowing how hard it is to put in the physical effort it takes to succeed like they have.

This experience—although I was not there to witness their entire progress—made me reflect upon my own past when I learned how to ride a bicycle. Having CP, it may seem unlikely that bike riding is actually my favorite form of exercise, but it is true! I did not learn how to ride a bike until I was nearly nine years old (four years later than my twin sis) but I never would have thought that it would become such a fun part of my active lifestyle! The day I learned how to ride a bike is a day I will never forget; my parents woke me up that morning and told me this was the day I was going to ride a two-wheel bicycle. Before then, I just had training wheels and started to feel like I was never going to be rid of them, how embarrasing! My whole family and I took a trip to the boardwalk in Huntington Beach, my hometown, and my dad placed my bike on the side nearest to the sand. He told me to get on my bike, and that he would help me start, but by the end of the day he made me promise that I was going to ride without any help! Looking back, my whole family seemed pretty fearless about my CP—and I think that was a great thing for me at the time! It forced me to continually challenge myself, because everyone around me was always doing the things I wanted to do, but just took longer to learn and adapt to because of my CP. After several scary spills and nose dives into the sand, I became more and more frustrated with my lack of balance, but it motivated me to keep going and I eventually grew more comfortable with the fluidity of my legs and found my rhythm! I was exhausted and probably a little shaken up from the day, but as you may know already, CP comes with its fair shares of scraped knees and hands just from everyday life! Now, biking is the best thing for me; it’s low impact and great cardio! The only adaption I make is adding a foot strap on the left pedal, so my foot won’t slide off in the front. I’ve been riding my beach cruiser around ever since that day and I find it so freeing because I can go much faster than if I was running, and no one would ever know I have a physical disability when I am on a bike!
Looking back, learning how to ride a bike was just the next obstacle that I was determined to overcome at the time and I know myself well enough to admit that I am the type of person to never back down from a challenge, no matter how difficult my CP makes it for me!
That is probably the type of attitude that I’ve carried with me over the years and got me through my years of AYSO soccer, over Yosemite Falls, and into my active lifestyle where I am today. I have had to slow down quite a bit because my CP does make running and rigorous activity difficult; so I just continually adapt myself to what my body can manage on a daily basis! It has taught me to value my body, and has improved my capacity to understand my limitations. I know now that however frustrating they may be—we all have our own limitations whether we set them for ourselves or not. Some people I’ve encountered over the years call me courageous or inspirational, but I prefer to think of myself as a resilient human being… we all have our own struggles to endure—we just have to learn how to better deal with them when we can’t always overcome them, and that’s what my CP has taught me.

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UCP SmartBrief

Hello UCP family,

We hope you enjoy this week’s UCP SmartBrief, a compilation of news stories, articles and new research impacting the lives of people with disabilities and family members.

If you should have any questions please contact Elizabeth Eckman at eeckman@ucp-oc.org.

Thank you,

UCP of Orange County

Disability News

Why Internet accessibility may be the next big civil rights issue
The U.S. Justice Department this year is expected to issue guidelines on how the Americans with Disabilities Act applies to websites. Recent lawsuits against companies such as Netflix and Target have brought the issue of online content accessibility to the forefront. “Websites are the new frontier,” said Brian G. Muse, a law partner with LeClairRyan in Williamsburg, Va. Detroit Free Press (7/5)

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Study examines IVF and risk of autism, intellectual disability
Overall, in vitro fertilization treatments were not linked to an increased risk of autism in singleton children, but IVF with intracytoplasmic sperm injection carried a slightly higher risk of autism or intellectual disability, a Swedish study showed. Conception of twins under the most serious forms of male infertility was tied to a fourfold greater risk of autism compared with less severe forms of male infertility, researchers reported in the Journal of the American Medical Association. CNN/The Chart blog (7/2), Reuters (7/2)

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Other News

Assistive Technology

Technology helps make school laboratory accessible
Purdue University is helping budding scientists with disabilities — many of whom graduate without conducting research — gain laboratory experience in its Institute for Accessible Science, where students have access to a range of high- and low-tech adaptive tools. For instance, one student who is legally visually impaired uses a device called Penfriend to read labels and computer software to record lab data. Journal and Courier (Lafayette, Ind.) (7/1)

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Volunteers build adaptive equipment for Minn. school district
Retired engineers and woodworking hobbyists build adaptive furniture and equipment for a fraction of commercial costs at a workshop located in a Minnesota school district. Their designs range from a chair with interchangeable parts that adapts to children of all sizes to a laser-guided bowling ball launcher. “We think we produce a better product than we can purchase because we can customize it to the child we are serving,” special-ed executive director Ann Casey said. Star Tribune (Minneapolis-St. Paul, Minn.) (7/4)

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Other News

Transitions

Colo. woman creates virtual world for people with disabilities
Coloradan Alice Krueger, who has multiple sclerosis, created the online community Virtual Ability within Second Life, and the community has more than 700 members with disabilities. Users, who create avatars that are not bound by physical limitations, can interact with other members in the virtual world. Retired University of Colorado neuroscience professor Mark Dubin says such programs can be therapeutic. The Denver Post/Colorado Public News (7/5)

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Other News

UCP News

Full Spectrum Newsletter
Want to find out more about how to get involved in the World CP Challenge, read about the Adventure Trails of UCP of Central Pennsylvania, learn about an underwater wheelchair ballerina, or the PCORI awards? Then check out the latest issue of our Full Spectrum newsletter, and be sure to sign up to receive the newsletter each month!

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Life Labs Blog
Life Labs, a technology and grassroots-focused initiative of United Cerebral Palsy dedicated to identifying, developing and supporting ideas that will make a difference for people living with disabilities, has continued to feature some amazing stories on their blog. Learn more about what Life Labs is up to and the stories they are highlighting on their blog.

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“Beware of false knowledge; it is more dangerous than ignorance.”

— George Bernard Shaw,
Irish playwright and essayist

Life’s a Journey With CP and Me

katyfd-225x300

Hello UCP-OC!

It never ceases to amaze me how quickly the months go by, and has been awhile since I have written to all of you, so I’ll just give a quick little background on who I am and what I do for new readers.

My name is Katy Fetters and I am a sophomore at Soka Univeristy in Aliso Viejo, CA.  I also have cerebral palsy on the left side of my body and always have to be super conscious of my physical health as a result. I lack a lot of balance and coordination, but still try to stay active so my legs will be always be strong! Over the past year I have had to deal with a bad stress fracture in both of my feet due to my abnormal gait, and so I have really been stretching often and making sure I can avoid any more pain or surgeries. You could say this is the life of a college student with CP, ha!

Anyway—As important as it is that you know who I am is, that is not exactly what I want to talk to you about today! I would like to share with you that the Sea & Sky Guild’s Casino Royale is this Saturday, March 9th. Last year I was so kindly invited to be a guest speaker at their very successful fundraising event. Alongside CP Ironman and friend of UCP-OC, Bonner Paddock—I spoke about what it was like growing up with a physical disability and really tried to instill the importance of this fundraiser to the audience. It was a huge honor, and my first public speaking engagement about having CP. I was nervous but I knew it was important to talk about my experiences and to recognize how unique this center really is. As a child, I did not have a Life Without Limits Center to go to, I didn’t know anyone like me, and so I often went about life ignoring my disability. It was especially hard for me as I went into high school—feeling alone in this….Not having a center like UCP-OC when I was young, I always found it really difficult to make PT and CP a part of my routine day. My siblings and parents will agree when I say that I was the most stubborn child when it came to confronting my CP for what it was! So take it from me—the kids at UCP-OC may not realize it now, but the Life Without Limits Therapy Center is one of the most valuable centers around here for families and children with disabilities. It forces them to stretch, to interact with others, and to have that physical, social, and emotional support that they need! So please, if you are considering going to the Guild Event this next week, please go out and support Linda Beresford’s family and the Guild’s efforts to raise money for our community’s center!

Life’s a Journey With CP and Me

Hi Everyone at UCP-OC!

I hope this post finds you well, and that you are enjoying the beautiful month of May. I cannot believe the time has come for me to move back home for the summer! Finals are over, and my dorm room is all packed up and the walls are bare! It’s nice to realize how much I made this place my little home away from home. I am looking forward to coming back in the fall to take on a new year! This year has taught me so many things about myself, about my education and about the world around me. I can’t wait to explore this aspect of my life even more over the next three years! It feels like only last month that I started blogging on here about my new college experiences with CP and such. We are almost half way into 2012, wow!

I haven’t posted in awhile because I am just at the tail-end of my recovery from surgery, actually. About five weeks ago, I found out that a stress fracture in my non-CP foot was actually a broken bone that I had been walking and running on for about three weeks prior. So now I have a 3 inch metal pin in my foot, super weird! It was definitely a rough experience—I was dependent on my family and friends to help me get around since I couldn’t drive, or walk without crutches. You can imagine how weird it is to have to rely on my CP side to give me the balance and coordination to keep off of my injured “good” foot. I had to get used to something so unfamiliar to me in such a short amount of time, so I think my body was in shock from the recovery process and the amount of energy my CP side had to exert as well. All in all, I learned so much from this though. I learned that it is important to listen to your body’s signs, and I learned that it is okay to ask for help. I grew to love my school even more because I truly felt constant support and love from my classmates and even professors, and that has shown me how special Soka is as a college.

But even more than all of that, I think the biggest thing I could have taken away from the past few weeks is how lucky I am to have the ability to walk. I never complain much, but sometimes it is easy to get caught up in how “inconvenient” it is to have CP. Having my walking ability be so hindered by my surgery for a little over a month has really allowed me to reflect on my circumstances in comparison to those who have CP more severely. I went to San Francisco a few weekends ago, and while those hills nearly made my legs fall off, I still felt very happy that I could get around the city alongside my family. I admire the courage it takes to let go of your pride and vanity a little when you need to depend on others to get through the day. I am happy to say that I am back on my feet, with a boot on to secure my foot from becoming more injured, but I am surprised by how well my recovery went. I am very conscious of my body’s ability now more than ever, and plan to take on these next few weeks with great ease so I can work my way up to running again in time for the half marathon early next year.

I hope all of you have a great start to the coming summer months, and maybe have a fun vacation planned with the ones you love. I know I am looking forward to this season!

Best Wishes, Katy

Life’s a Journey with CP and Me

Hello friends at UCP-OC!

I hope you have enjoyed the holidays are starting 2012 off right! There are many things I would like to accomplish this year, but most importantly I am just focusing on staying healthy and doing well in my second semester of college. I hope to continue to spread awareness about cerebral palsy, especially to the younger people of our time because that is where we can make the greatest impact! I feel like the more people who know that there are children and teens with disabilities that aren’t getting the help they need; the more programs can continue to grow and help those who need it. It is all about education and awareness, right?

So I have been trying to up my cardio a little bit, because I would like to get a team of students and whoever else is motivated, to participate in the OC Marathon raising money and awareness for UCP-OC! Running is not easy for me, but it makes me feel strong and healthy, and I hope to continue to run for as long as my legs will let me. Since I only have CP on my left side, my right leg fatigues much faster than the average person, which makes me have extra tight leg muscles. Thankfully, I know when I need to stretch and take some easy days so I don’t overdo it!  Anyway back to what I was saying earlier, my goal for the run to get sponsors to fundraise a bit, but since we are all on a college-student budget it might just be a great opportunity to get out there and have some fun in honor of a great cause! I am probably going to get a new pair of running shoes soon, so if any readers know a great brand for someone like me with CP then go ahead and post a comment if you’d like! I’d appreciate any tips. 🙂 I will keep you all on the update about the progress to get a team of runners together, but for now I just hope some people will be open to the idea when everyone gets back for the semester in February. The team for the OC Marathon is “Team Jake & UCP-OC Families, so if you are interested and want to join, (or sponsor someone) let us know on the blog here and I am sure we can get you some more information. You can also follow this link to the page, click here.

On Saturday, February 11th, I will be speaking at a fundraising event in support of people with disabilities and UCP-OC. The event, Sea & Sky Guild’s Classic Vegas, will be an evening of dinner, cocktails, silent and live auctions and casino gaming all in support of the Sea & Sky Scholarship Therapy Fund for UCP-OC. I am honored to be a part of a night dedicated to spreading awareness about our common cause. Hopefully I will see some of you there!

Well I am off today to get my hair trimmed from my twin sis who is in cosmetology school… (I know what you’re thinking—uh oh…but she is doing so well and takes clients on a daily basis!) Great for me, though—I can always have nice hair. 🙂

Take care everyone, and I’ll get back to you in February!

-Katy

Here is the invitation for the Sea & Sky Guild Classic Vegas. If you are interested you may purchase a ticket on UCP-OC’s website. Click here to go to the site.

Life’s a Journey With CP and Me

Hello everyone at UCP-OC!

What a month this has been, college really is such a whirlwind! Thankfully, I’ve kept myself busy planning an event here at Soka University in Aliso Viejo. Tomorrow night, there is a campus-wide movie showing of Beyond Limits that I am hosting alongside the Humanism in Action Club! For those of you who aren’t already familiar with Beyond Limits, it is a short documentary about Bonner Paddock, a man with Cerebral Palsy from OC and his daring climb to Mt. Kilimanjaro in 2008. The Life Without Limits Center is actually featured in the film as part of the main focus for Bonner’s motivation to climb Mt, Kili, pretty neat, huh? I am showing the film in order to bring awareness and support to centers like UCP-OC, and simply for fun…I think it will be a great way to meet people on campus, and share a bit about my own story and what it is like to have CP. I am kind of nervous, being the only freshman and all really trying something new like this, but I know once I get up there with a few others, I will be okay. 🙂

After the showing, we are going to raffle off a few posters and DVD’s and have a Q&A session with Bonner himself! I am so glad he can attend, because I think he’ll help really share more about our cause in supporting children with disabilities. Not only that, but it’s not often the star of a cool movie attends small events like these, so I am hoping we will have a good turn out! There are only about 450 students on campus right now, so it can’t really get more personal than that.

Also, the Soka HIA club is going to go to the Friday Night Club for Teens with Disabilities on December 2nd at the Life without Limits Center, so we are going to see if more people want to join us and even work on more projects for raising awareness (and maybe some money too!) for this cause. I am super excited to hang out with some cool teens, and get Soka involved as well! I think it is great to make new friends, and meet people from all different kinds of backgrounds. 🙂

So that’s the latest scoop on everything a college girl with CP is doing. I hope you all have a great Thanksgiving and holiday season!

-Katy

Life’s a Journey With CP and Me

Hello Everyone at UCP-OC!

My name is Katy Fetters and I am a college freshman at Soka University right here in Orange County! To introduce myself a bit more, I was born with mild hemiplegic Cerebral Palsy and I feel fortunate enough to get around okay with my CP, but I do experience much of the fatigue and tightness that comes along with having CP. I have been involved with UCP-OC on and off this past year or so with the Gala last spring, and since I am local to OC, I have visited the Life Without Limits center a few times now. I also keep up my own blog for teens with CP on www.teencerebralpalsy.com, and blog for the OM Foundation, www.1man1mission.org  one of UCP-OC’s donors. That’s about it! Starting this week I will be writing once a month about what its like to have CP and be a college student.

As far as college goes I have been here a little over a month now, living on campus and getting acclimated to what college has to offer! I’ll get right to the point and tell you why I am here writing to you all. I am sure most of you know someone with a disability—may that person be yourself, your child, sister, cousin, aunt or uncle… The idea is that we can all connect with each other on some level. I would like to share some of my most recent experiences with being a freshman in college and dealing with CP. As frustrating and difficult as CP is at times (I am sure some of you know!) I feel like now that I am in college, I have realized that people don’t really put too much consideration into the fact that I walk differently from “normal” people. Sure, there are still people who ask me why I am limping, or what is “wrong” with my leg, but that is mostly out of concern. I feel like at this stage in my life, many people are past the point of bullying or poking fun at me for walking differently. I am free to be myself, more so than at any other time in my life. It is a very comforting feeling, knowing that I am in such a non- judgmental environment where physical appearances hold very little significance. Granted, not all colleges are like Soka as far as I am aware. Everyone here is very welcoming and excited to learn about the world and themselves.

I grew up in Orange County, so I know what it is like to go to a high school where the shoes you wore defined how cool you were, or how you looked was a measure of social competence and acceptance. Trust me, I struggled in high school.. so for me to come to college not knowing anyone and feeling like I am totally in my element, is refreshing.  I am telling all of this to you with the hope I can show you that my experience with going away to college and living with Cerebral Palsy is very manageable. It is overwhelming yes, there is a lot of different things to take into account that people my age would never even think twice about (ie. Getting around campus, wearing a brace at night, and finding shoes I can walk in…) the confidence building is still taking place, but every day I assure myself that everyone goes through struggles with or without a disability during a transition period. CP is just that little cherry on top that I constantly have to work with, and I have come to accept that.

I think that is all I have for today. I am aware that CP comes in all different forms and severities, and that is why I stress to you that these are my personal experiences with Cerebral Palsy, and my only hope is that you can take something positive from my experiences and realize that CP should never hinder you from following your (or whomever you know with a disability’s) ambitions. I hope that I am able to give you some insight into how CP affects a young adult like me!