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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A Year in Review

An Update from Our CEO

Cathy with firefighters CEO Cathleen Collins shares in this upcoming Summer Newsletter a review of this past year and celebrates the mark of UCP-OC’s 60 years of serving Orange County

2013 marks a special year as we celebrate our 60th Anniversary in Orange County, and the different core programs, people and events that have played a vital role in our organization. We are excited to reflect on the past 60 years and those who have made a difference this year to empower families and help children challenged with special needs to live a “Life Without Limits”.

Thank you to all of our donors who contributed to our Golf Tournament, Life Without Limits Gala and our Annual Fund Campaign. With your support we were able to raise more than $1.398 million this year!

October launched our fundraising season with our Annual “Autumn Golf Classic” and Brianna Cup Golf Tournament, chaired by Scott Pievac CEO of SPC Retail Display Group with lead sponsor Dana Dowers and DLD Insurance. Please Save the Date for this year’s tournament on Monday, October 21, 2013.

In March our support guilds ushered in spring with two spectacular events, the first a festive Fashion Show hosted by Psi Delta and the second a glamorous Casino Royale, hosted by the Sea & Sky Guild and chaired by Guild Founder and President, Linda Beresford.

On Friday May 10, 2013 we held our most successful Life Without Limits Gala to date. Honoring our 60th Anniversary and the philanthropic leadership of Michael K. Hayde. His example of community support and personal philosophy on giving back made him the perfect recipient of our UCP-OC Impact Award. We are very grateful for Mr. Hayde’s support of our organization and the children and families we serve. We are especially grateful for our many event sponsors including lead Life Without Limits Sponsor, The Argyros Family Foundation. For a complete list of event sponsors please see our upcoming newsletter.

UCP-OC is fortunate to have a team of skilled and professional therapists, administrative staff and program specialists who work tirelessly throughout our community. Our collaborative and coordinated children’s services strive to meet the comprehensive needs of families to ensure the support they need throughout a child’s life. This year many of our therapists and staff have spent countless hours outside of UCP-OC earning new certifications and accreditations to further serve the children that come to UCP-OC.

You can remain updated on the happenings at UCP-OC by following us on our Facebook, blog and even Twitter page!

Thank you for supporting our mission to serve the Orange County community and acknowledging the importance of the programs and services our organization provides. Please consider a gift to UCP-OC to support our Annual Fund this year. Annual gifts to UCP-OC help to ensure that every child in need of services receives help and supports critical infrastructure needed to provide excellent care and service. Most importantly, your support helps to ensure a Life Without Limits for every child with disabilities!

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Life’s a Journey With CP and Me

katyfd-225x300Hi Everyone,

Wow, it certainly has been awhile since I have blogged for UCP-OC! I am happy that things have slowed down for me a bit, so I can share with you all, what I have been up to this summer.

I just finished my sophomore year of college at Soka University, here in Orange County. It was a busy semester, but I enjoyed it so much and I am proud of what I have accomplished. I haven’t blogged in a few months for UCP because I have been recovering from surgery since the end of my semester, too! Due to the imbalance of my body and pressure on my feet from having CP, I’ve been dealing with stress fractures in both of my feet over the past year. Two surgeries later,  I am happy to say I am healing, walking again, and on the road to make a full recovery! It’s been a stressful journey, but as a result, I am much more in-tune with my body and I am focusing on doing more physical therapy, strength training, and yoga to get back to where I was before my injuries.

I also have been able to volunteer more at UCP-OC! Alongside UCP-OC’s Marketing and Development Coordinator, Elizabeth Eckman, I am helping to promote the World CP Challenge, a 4-week fun and interactive fundraiser that supports our very own center right here in Irvine! There will be more information to follow in the coming weeks, but if you are interested please email myself at kfetters@ucp-oc.org or Elizabeth at eeckman@ucp-oc.org  and take a moment to check out their website here: www.worldcpchallenge.org/ucpoc.

Summer time is busy with internships for college students, and I started my summer off with a part-time internship with a music production company in Venice, CA called Mophonics Music and Sound. It’s been fun getting to experience a new environment and change of atmosphere from the quiet of the suburbs here. I am able to sit in on most production calls and talk with music composers and songwriters about their work with ad agencies or even aspiring musicians and bands. This company works to provide their clientele with original and fun music to any type of commercial or movie reel that needs some creative voice behind it. I’ve always enjoyed writing and music, so to combine and pursue my love of both behind such a talented group of people would be so exciting!

I hope you all had a fun and safe 4th of July, and please enjoy the rest of this beautiful summer month! Thanks everyone!

-Katy

———

For those of you who don’t know me, My name is Katy Fetters and I have cerebral palsy on the left side of my body… and I am also the creator of TeenCP! (www.teencerebralpalsy.com) TeenCP is a blog that has become a great resource over the past four years for teens and young people with cerebral palsy to connect and find the support that they may not find otherwise find. If you haven’t already “liked” the page on Facebook, be sure to type in TeenCP and find us there, too!

Life’s a Journey With CP and Me: National Siblings Day

katyfd-225x300Hi All,

I hope you are all enjoying your week so far, in commemoration of National Sibling Day (earlier this week) I am going to talk about having siblings and what that means to me and CP. I have an identical twin sister, Sara, an older brother, Matt, and a younger sister, Daisy. None of whom have CP—but all of whom fully understand what growing up with CP has been like, just from an outer perspective!

I truly believe that my upbringing as a child has allowed me to be who I am today. With the help of my sibling, my confidence went unshaken, and my fear of judgment drifted away. With the help of my siblings, I was happy and my dream of normalcy came true. However, as children, none of us really knew what CP was. We were too busy playing at our neighborhood park or teaching each other how to ride a bike so we could all keep up with the other kids. I didn’t learn how to ride a bike almost three years later than my twin! But at the time, we all just accepted the fact that “Katy just takes longer to do things with her legs.” It was never something I mentally let slow me down, because my siblings never treated me any differently. As far as I remember they knew that I was slower and less coordinated, but it was just a fact and nothing beyond that at the time. I am so grateful for that, in hindsight. Even up into high school, my siblings and I always did things together and my CP was never an issue that separated me, from them. Whether it was playing soccer or just hanging out and riding our bikes to the beach—I did everything just the same, but at a different pace and that was easily understood by all. I am lucky that my family and I are so close that we have been able to grow up with this special bond, and I think that my CP has made us closer, in a way. Sara and my brother, Matt always looked out for me; they were my “protectors” at school and when we were running around being kids. 

In an interview with a UCI college student, Irene Sanchez, Sara remembers: “When I think about growing up with my sister Katy, I think back to us always being together and riding our bikes to school or finding each other when we were apart because I always felt the need to be with her and to make sure she was ok.”

I always felt that, and still do. Whenever we cross a street Sara still makes sure I am beside her, just like she did when we were little on the school bus every morning! I remember one time, my brother Matt saved me from falling off the side of a moving escalator! Whenever we went on family hikes he always stayed behind me in case he had to grab my arm, as I often stumbled around on the loose gravel. I always felt that Daisy is patient with my CP and she understands how it effects me, both physically and emotionally. It is that kind of understanding and protection that I have been blessed with, and the fact that I never had to ask for it makes me all the more thankful for my amazing siblings. To this day, Sara, Matt, Daisy, and I remain the best of friends and we will always be loyal to one another as we continue to grow up and create our separate lives. Needless to say we all love each other very much and are all a part of one another in so many ways.  That is what my siblings mean to me and my CP as I have grown from a small child into the person I am today!

Katy siblings

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

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!