Recent studies show a staggering statistic that 1 in 6 children in the U.S. will be diagnosed with a developmental disability. UCP-OC proudly serves the 1 in 6 children in our community that make up this statistic.
For nearly 5 years, Geri Kate and Frank’s life has been a race to provide their son Granden with the services and therapies he needs to not only survive but thrive. Granden’s diagnosis of Jeune syndrome, a rare genetic disorder where nearly 60% of children do not reach the age of two, led his parents to United Cerebral Palsy of Orange County (UCP-OC). With the help of UCP-OC’s quick acting Early Intervention team, he graduated from UCP-OC physical therapy, reached his monumental 2nd birthday and now has a more healthful future. Many of you were touched by hearing Granden’s story, and made the pledge to support United Cerebral Palsy of Orange County’s Early Intervention program. Through your generosity, the Early Intervention program is able to serve more than 360 children annually. We sincerely thank you.
Today, two years later, UCP-OC sat down with Geri Kate and asked her for an update on where Granden is today, below is our conversation
UCP-OC: Where is Granden at today and how has UCP-OC helped get Granden to where he is today?
Geri Kate: Granden is a talkative 4 ½ year old about to graduate from UCP-OC speech therapy. UCP-OC’s Feeding Group helped Granden start to feed by mouth and rely less on his feeding tube. With this motivation we entered him into an intensive feeding program, and now he does all feeding by mouth. UCP-OC has been the catalyst to achieving all the milestones he has reached in the past4 years; our experience with UCP-OC has truly been life changing.
UCP-OC: What should others know about UCP-OC and how they can make a difference?
Geri Kate: There are many ways to get involved! You can volunteer; as a mother I volunteer on the Parent Guild that assists in fundraising events for the organization. You can sign-up to give a donation monthly; my nieces gave a portion of their allowance to support “Granden’s Cause!” Or, you can even help to fulfill toys and materials on their wish list. A full list of wish list items can be found at www.ucp-oc.org.
UCP-OC: We are very grateful for your support, can you share why you & Frank give both financially and of your time?
Geri Kate: UCP-OC has done so much for our family and the community; it is our way of giving back. They have guided Frank & I through the many services, resources and therapies Granden needed and go above and beyond to care for the families and children that walk through their doors.
UCP-OC: What is your favorite UCP-OC moment with Granden?
Geri Kate: The moment Granden started walking in physical therapy with our physical therapist at the time, Melanie, was a tearful and very emotional experience that we will never forget. We had fears of him never walking, and instantly we were filled with jubilation, relief and thankfulness for the hard work and dedication shown to Granden.
Lance is almost 3 years-old, and his bubbling personality and joyous spirit will capture your heart immediately. Lance loves trains, and his favorite food is pizza—with heartfelt thanks to his occupational therapist, Ria, who has introduced him successfully to a variety of foods. At therapy, Lance loves to finger paint and do any arts and crafts project. As a Laguna Beach native, keep an eye out for his art work in the Sawdust Festival in a few years!
Sweet, smiling Lance came to UCP-OC at 20 months of age. Prior to receiving therapy at UCP-OC, Lance’s vocabulary was limited to 3 words. His speech therapist, Jeanné, worked diligently with Lance on requesting labeled objects, participating in reciprocal interaction through modeling and play, and strategies to facilitate conversation. Then one day, after several months of speech therapy, there was a language breakthrough! Lance imitated a word “ma-ma” and then he started imitating more and more words. One of Lance’s favorite activities during therapy is to play in the bean bucket. Jeanne hides objects in the beans and Lance digs through the beans to find and label the hidden treasures. This allows his therapist to further work on labeling nouns and verbs and peer interaction. Today, Lance has greatly improved his receptive and expressive language skill and says multiple word sentences, even using past tense verbs!
After coming to UCP-OC for speech and occupational therapy, Lance joined the very popular Let’s Grow group class with Miss Ana and most recently joined the Talk, Play, Learn group with Miss Pati.
His occupational therapist, Ria, worked with Lance in improving his oral motor skills in order to manage textured foods safely. Prior to his intervention, Lance tended to swallow whole pieces of food without chewing it. Due to this Lance’s diet was limited to mushy textured, stage 3 baby foods. After several months of therapy, Lance is now able to enjoy most toddler foods, but he prefers them in pizza form!
Recently Lance became a big brother and is already impressing everyone around him at how nurturing and attentive he is to his baby brother Clayton.
Lance will be turning three at the end of February and will be transitioning out of UCP-OC and into the school district. As difficult as it is to see his smiling face go, it is a true testament to the superior work and dedication our therapists have shown Lance!
Lance’s mother, Laura Lee, says, “Ria, Jeanné, Ana and Pati have been absolutely fantastic with Lance these past 17 months. The changes we have seen in Lance have been nothing short of a miracle, and we will be ever grateful to Lance’s therapists and all of the wonderful people at UCP-OC, including Vianney who was so quick to find Lance a spot when our RCOC case worker inquired; the occupational speech therapist who first assessed Lance in October 2012; Anais who amazes me daily with her sweet disposition and quick, genuine smile; and the many parents I have met who encourage their children and are ever so busy with their toddlers’ schedules but never complain. UCP-OC truly is an amazing place!”
If you would like to make a gift to support the services that are helping Lance and his family, please click here or contact Elizabeth Eckman at email@example.com for more information.
Brooke ended her first evening at the Friday Night Club telling us she met a friend; something we had never heard her say before.
At 15 months of age, we learned our daughter Brooke would have challenges ahead of her. Now 16 and with a diagnosis on the autism spectrum, social interactions with peers are often difficult and distressing for her, many times leading to seclusion. As she entered her teen years, Brooke saw her sister socialize with friends and wanted to participate in “teenage” activities, but it was difficult to find a place where she would fit in. We knew there were many teens for Brooke to meet, there was just nowhere for this to take place. As parents, this affected us deeply. Then two years ago, through United Cerebral Palsy of Orange County (UCP-OC), we heard about the Friday Night Club.
Friday Night Club opened Brooke’s world. This bi-weekly event is a place where teens with disabilities feel welcomed and accepted. It gives teens with or without disabilities the opportunity to play games, watch movies, sing karaoke and simply spend time with one another in an inclusive and fun environment. Friday Night Club gives teens with special needs something to look forward to.
Every person deserves a place to belong and friends to share in their journey, and Brooke now has that. This club brought out positive emotions in Brooke we had never seen, and more than anything we see self-confidence. In addition to Friday Night Club, Brooke looks forward to UCP-OC’s therapeutic fitness and music classes, as well as respite with a trained UCP-OC employee, which also gives us a much needed break. UCP-OC has given our daughter a home.
With your help, Brooke can continue to look forward to Friday Night Club and the other UCP-OC services she and nearly 4,000 Orange County children and families utilize throughout the year. The Friday Night Club is just one of the many programs UCP-OC offers to end the isolation that so many children and teens with special needs feel. Programs at UCP-OC serve the critical developmental, social, and emotional needs of children and teens with disabilities and provide much-needed support to parents and caregivers, including education and skilled childcare.
We invite you to join us in giving back to UCP-OC this season in gratitude for all UCP-OC has done for our daughter and her new friends. We are grateful for a place where teens can feel accepted for who they are.
UCP-OC relies on your generosity to fill these critical gaps in services. Children, teenagers and young adults with special needs are a growing demographic in Orange County, and are often isolated and overlooked. Together we can foster friendship and acceptance for all children with disabilities in Orange County. Please help children and teens live a Life Without Limits by sending in your gift or going online to www.ucp-oc.org/give today.
Thank you for making a difference in the life of Brooke and her friends at UCP-OC.
Hilary & Mark Kershberg
P.S. Visit www.ucp-oc.org/give to make a gift today and watch Brooke’s video of her journey to friendship.
Katy 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 Challenge 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!
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”.
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!
After three years of desperately trying to start their family, David and Drexelle learned that they were going to have a baby. “We created a hope for the future and an image of what our children would look like and two days after our son was born it felt as if those were stolen from us” David recalls.
“The nurse picked up our baby, turning him over like a ragdoll, and pinpointed everything on his body that looked like Down syndrome.”
Left with a diagnosis and anxious for a place to go, Regional Center guided the Park family to United Cerebral Palsy of Orange County (UCP-OC) for in-home early intervention services when Knightly was only 1 month-old. Ana Reyes, UCP-OC’s early intervention specialist, entered the Park’s home and started working with Knightly immediately.
The first years of a child’s life are critical to their development. For a child with special needs early intervention is the main line of defense to remain on the track with their developmental goals. In-home services allow UCP-OC to work on Knightly’s goals in his natural environment using tools at the family’s disposal to stimulate the different areas of global development such as fine and gross motor skills, sensory and tactile stimulation and cognitive development.
For Drexelle, Ana Reyes has not just been a specialist for her child, but has helped her through the grieving process. “I look at her and I am inspired. She sits and listens, and is truly an inspiration. She gives me confidence as a mother that I can do this. Most of all, she loves Knightly and that is a gift, especially in the beginning when we were worried if people would love our son. We mourned for what we thought our child was and now we experience what he really is and how beautiful he is.”
With Ana’s dedication, early intervention and the resources UCP-OC provided the Parks, at 9 months Knightly is now on target to meet all his developmental goals and is learning to crawl. UCP-OC is monitoring his development; and remains vigilant and aware of what services he will need to continue thriving.
“We are giving back to UCP-OC this spring in gratitude for all Ana and the organization have provided our family. With help from UCP-OC, Knightly can fight to have a great life, a Life Without Limits.” –Drexelle & David Park
In-home therapy is a cornerstone of UCP-OC’s robust 60 year history in Orange County. This service enables UCP-OC to reach families who are unable to leave their home either due to lack of transportation or medical frailty of the child. Of the 4,000 families UCP-OC impacts, 20% of our therapy families receive services in-home. Many of whom are low-income families. Funding for early intervention services continues to be cut and your support is needed to guarantee these families are served.
Your gift will help inspire a mother and father and assist a child in fighting for a Life Without Limits.
By sending in your gift or going online to www.ucp-oc.org/give, you can help build a child’s future.
Thank you for making a difference in the life of a child.
In a class assignment, one of our parents was asked to describe how parents of children “go through” the stages of grief. After sharing her heartfelt and emotional answer on how she views UCP-OC, we were left speechless and eager to share with our families. We hope you enjoy it and can connect with her feelings. Please leave a comment to share with Adriana!
I have four daughters. My two oldest have ADHD and my youngest child was diagnosed with Cerebral Palsy. Reading each stage reminded me of the day that I was told of my youngest having Cerebral Palsy. For me it didn’t feel like stages were the best word to describe the emotions it was more like waves. When the doctor first told me it felt like I was standing on the beach seeing this giant tsunami coming right towards me. I looked to the side and saw my three oldest daughters playing in the sand with their dad making sand castles. I have my baby in my arms and start to run as fast as I can away from the tsunami (shock, denial). I run towards my family, I saw a little canoe with some life jackets and yell at them to get the jackets on…the same time praying that the wave doesn’t kill us.(fear, anxiety) The wave hit and knocked me down and I couldn’t breath.(depressed, stressed, guilt, hopelessness) I felt like I was drowning, I was kicking and trying to swim to keep my head above water. I had no more strength to keep swimming and I couldn’t breathe. Right before I start to sink God sends a lifeguard. The life guard puts you on his lifeboat and takes you back to shore, talks to you, gives you techniques you will need, and shows you where to find some answers. You look up and see your baby’s face. It looks like the sun setting on the beach; that moment when the sun hits the water and it’s the most beautiful sight ever. You know that you are going to have to face the ocean of waves again but this time you do research and use all the resource available such as therapy for the baby, support group for the family, online classes etc. You turn around and there it is again, the Tsunami building strength, but the difference is you don’t have a canoe or life jackets, instead you build a submarine. You help your family in and right before you shut the lid to this steel, strong submarine you look straight at the wave and think BRING IT!
–Written By Adriana, mother of Alyna
Please click here to find out how you can make an impact on children like Alyna and mothers like Adriana!
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!