Ride On, Bike Campers!

From August 10-14, 2015, 35 children and young adults with special needs and 120 volunteers came together at Soka University for UCP-OC’s annual Bike Camp, hosted in partnership with Down Syndrome Association of Orange County. Learning to ride a bike is a quintessential childhood experience, but it can be especially challenging for children with special needs. Through the iCanShine program’s adapted bikes and specially trained staff, learning to ride a bike goes from a daunting undertaking to a proud accomplishment.

Arissa with her volunteers
Arissa with her volunteers

Bike Camper Arissa is 10 years old and always wanted to learn to ride a bike but was scared to do so. Her grandmother, Anita, stumbled across a page about it while searching online for training wheels. Anita is so glad that Arissa can now ride a bike because she believes that being able to ride a bike is a vital part of being a kid. She will never forget the huge smile of joy on Arrissa’s face when she was riding the bike at camp, especially the tandem bike. Arissa and Anita agree that the volunteers and staff were fantastic – motivational, dedicated, and fun! We hope you enjoy this interview with them.

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UCP-OC 2014 Life Without Limits Gala Video

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.

 

Learn more about the services UCP-OC provides:

Physical Therapy Month

pediatrictherapyIn honor of National Physical Therapy Month (yay October!), we want to do a fun/informative post.

10 signs that you’re a Pediatric Physical Therapist

10- You are used to answering the question, “What?? Why do kids need physical therapy?” after someone asks what you do.
9- You get excited to wear fun socks to work because let’s face it, you barely wear your shoes at work anyway.
8- No matter how your hair is styled for the day, by the end of the day, your hair will be tied back in a pony tail.
7- You have your standard 5 nursery rhyme songs you know by heart and can sing all day long.
6- You have at least 1 toy rolling around in your car.
5- You’re a pro at walking in a squatting position and walking backwards down stairs.
4- You are able to use 1 toy for a minimum of 5 different activities.
3- You know how to sign for “more” and “all done.” (you probably just read this again and did the sign with your hands )
2– You’ve developed cat-like reflexes to dodge flying toys and to catch falling children.
andddd last but not least!
1- You still get excited every time one of your patients reaches a new milestone

–Lisa Kerfoot, Physical Therapist, DPT, Manager of Therapy Services

 

Make sure to tell our physical therapists how much you love and appreciate them! You can leave a comment on the blog and they will see it.

Fun Facts

When we get down to it, we all like to hear new fun facts about people and places we are invested in. Especially when they are great conversation starters! This week we wanted to share with you our top 10 fun facts about United Cerebral Palsy of Orange County!

 

Fun UCP-OC Facts:

  1. Did you know UCP-OC started in 1953 serving 7 children with cerebral palsy?

    Early Intervention Specialist Ana Reyes in the Let’s Grow class on Monday mornings.
  2. UCP-OC provides access to resources all in one place! We offer the most comprehensive suite of services for children with disabilities anywhere in the Orange County community.
  3. The 5 most prevalent disabilities we serve, in no specific order, are cerebral palsy, developmental delay, autism, Down syndrome and speech disorders.
  4. Our iPads are used in therapy 40-48 hours a week, equivalent to a full-time therapist’s aid.
  5. We have 14 therapists on staff with a combined 160.5 years of experience. Four of our therapists have advanced practice certifications in addition to their credentials.
  6. More than 300 families receive respite care through UCP-OC each year. Respite provides a much-needed break for caregivers, transportation of special needs clients within the community, or assisting with other special care needs. Last month, families received over 6,600 hours of respite and childcare.
  7. Early Intervention Specialist Ana Reyes has been with UCP-OC for 25 years and has directly impacted over 2,500 families.
  8. UCP-OC’s Pediatric Medical Board consists of 15 of the county’s finest and most innovative doctors.
  9. In 2013, 464 new donors learned about UCP-OC and made an impact on the children we serve.
  10. UCP-OC’s Friday Night Club for Teens and Young Adults with Special Needs founder Natalie Cernius will receive the 2013 National Philanthropy Day Youth Award.

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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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Child of the Month: June 2013

June 2013: Knightly

Knightly Spring AppealAfter 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.Park Family 2

“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.

Knightly email signature

UCP News Brief

This week many of interesting articles have caught my eye, and although I posted a couple of them on our Facebook page I thought I would share them with you all in one place.  A few of these came from the UCP SmartBrief, so as I receive the SmartBrief monthly I will make sure to share it with you on the blog. This is a compilation of the top 10 stories and I thought many of you would benefit from reading them.
So please scroll through and look at a few that interest you!  Please leave us a comment with your opinions!
-Elizabeth Wylie

 

Disability Update

  • Psychiatric group OKs changes to diagnostic manual
    The American Psychiatric Association’s board of trustees approved Saturday the fifth edition of its diagnostic manual for mental conditions. The guide includes Asperger’s syndrome and “pervasive developmental disorder, not otherwise specified” in the autism spectrum disorder category, and introduces a diagnosis of “disruptive mood dysregulation disorder” for children. Bloomberg (12/2), The Wall Street Journal (12/1)     
  • Disability hiring rule would be costly
    The Department of Labor’s proposed disability hiring rule will be costly for companies, writes Sara Cann. A study by the Associated General Contractors of America found that an average-sized construction firm would need to spend about $14,000 annually — for each project site — nearly 30 times the DOL’s estimate of $473. Fast Company magazine (11/2012)     

Other News

Assistive Technology

  • Website supports better library access for students with disabilities
    A new website offers librarians a self-paced online curriculum of videos, games and assessments to help them better meet the needs of students with disabilities. Project ENABLE (Expanding Nondiscriminatory Access by Librarians Everywhere) was developed by Ruth V. Small of Syracuse University’s School of Information Studies after she conducted a survey of school librarians and found that they gave themselves low scores in the area of disability services. School Library Journal (11/30)     
  • Scientists design robots for individuals with disabilities
    Two scientists, Kaijen Hsiao and Matei Ciocarlie, at Willow Garage in Menlo Park, Calif., are developing robots to help individuals with disabilities be more independent in their homes. Still in the design stage, Hsiao and Ciocarlie are working with an individual with quadriplegia, on designing a robot to do basic household tasks, such as getting food from the refrigerator. San Jose Mercury News (Calif.) (free registration) (12/1)     
  • As online videos rise, those hard of hearing seek captions
    Videos are increasingly prevalent on the Internet, leaving out many people who cannot hear or are hard of hearing. Advocates for people who are deaf are seeking regulations requiring websites such as YouTube and Netflix to provide content captions. Some sites already are making content more accessible with automated captioning software. “Access to information has been labeled as a civil right,” said James House, public relations director for Telecommunications for the Deaf and Hard of Hearing. The Washington Post (11/28)     
  • Other News

Transitions

UCP News

  • Progress on the Convention on the Rights of Persons with Disabilities
    United Cerebral Palsy and a broad coalition of disability organizations are working together to get the U.S. Senate to ratify the Convention on the Rights of Persons with Disabilities. This week, Senate Majority Leader Harry Reid called the treaty up for a vote! Learn more about the treaty and join in UCP’s efforts to finally ratify the CRPD.     

United Cerebral Palsy and #GivingTuesday
On Tuesday, Nov. 27, United Cerebral Palsy, the Huffington Post and other organizations observed the first annual #GivingTuesday, a day after the Black Friday and Cyber Monday shopping rushes, dedicated to raising support for philanthropic causes. UCP President Stephen Bennett sheds light on what this support looks like for people living with disabilities and the difference even a small donation can make. Read Stephen’s story and learn more about how to take part in #GivingTuesday.     

Child of the Month: August 2012

Elizabeth: August 2012

Elizabeth is a laid back and fun-loving 1 year-old that meets with Ana Reyes, one of our in-home early intervention specialists. Elizabeth “Bethie” was born with Down syndrome and spent her first 2 months of life in the hospital learning how to feed. When she finally got home she began to thrive!

Wherever Elizabeth goes, she is everyone’s favorite. She loves being held by all the different women at church. He mother Denette says, “Elizabeth is perfect for our family, she is our second child and makes our family feel complete.”

When Ana comes to work with Elizabeth they work on different activities to stimulate Elizabeth’s brain to continue growing and thriving. This includes working on fine & gross motor skills, cognation, communication, social & emotional interactions and other different areas of development. Some of the activities Ana does with Elizabeth are taking pegs out of a peg board to work on fine motor, strengthen cognitive skills by encouraging her to imitate facial gestures and making works of arts through finger painting to increase tactile stimulation. She has taught Bethie new skills and in turn taught her parents how to continue to develop those skills when Elizabeth is not in therapy.

Ana Reyes has been with United Cerebral Palsy of Orange County for 25 years this month, and we are so grateful for her commitment to our families. Elizabeth is one of more than 2,500 children & families that Ana has worked with.

“We have been blessed with the opportunity to work with Ana. Ana is an angel sent to us; we absolutely love her! She has opened our eyes to the abilities Bethie has. Bethie is able to do much more than I thought!” -Denette, Elizabeth’s mother

Thank you Ana for all you do with our children, Happy 25 Years!!

If you would like to make a gift to support the services that are helping Elizabeth and her family please click here or contact Elizabeth Wylie at ewylie@ucp-oc.org for more information.

Child of the Month | July 2012

Savi

Savi loves to pop bubbles. With each bubble she pops comes a round of applause from the gleeful Savi.

Savi Costa is a 22 month-old little girl with an infectious smile, loving spirit and has a fascination with the beads Miss Beth puts in front of her to grab. She loves to read. While her mother is reading to her, she pretends she is reading out loud right along with mom.

Savi was born with Down syndrome, and has received Early Intervention services from UCP-OC since she was 2 months old. She receives physical, occupational and speech therapy at UCP-OC and she loves her time with Beth, Christine and Ria. Speech therapy works to expand her vocabulary and develop expressive language to assist her in communicating. For occupational therapy, Ria works with her fine motor skills and eating. Recently, she began using a sippy cup on her own!

In her current physical therapy sessions she works on putting her weight on her legs. In February 2012, she was fitted with orthotics through United Way’s funding.  Before receiving these orthotics, she could not bear weight on her feet; now, when wearing her orthotics, she stands nicely with hands held and has begun taking 3-5 steps forward with minimal assistance.  The orthotics also decrease knee hyperextension. 

 Her parents are extremely grateful for her services and the orthotics, as they believe this intervention has made such a significant improvement in her life. One of UCP-OC’s next goal for Savi is to have her stand with letting go to whatever is holding her up. We know she can do it!

  

If you would like to make a gift to support the services that are helping Savi and her family please click here or contact Elizabeth Wylie at ewylie@ucp-oc.org for more information.

Kristy’s Video Debut

Recently we shared a video on our Facebook page (www.facebook.com/UCPofOC)  that features on of our talented therapists in her dancing debut! Kristy wanted to make sure that NO ONE missed our fundraising sign in our lobby.

We had so many parents tell us how much they enjoyed the video and got a good laugh from it, that we felt in needed to be shared here!

More UCP-OC Info:

We have 9 days left to reach our fundraising goal!  To help us reach our goal the OM Foundation has stepped forward with a challenge to match every gift dollar for dollar, until June 30th We know that with you and the OM Foundation we can reach our goal!

You give. They thrive. Together, we can make a Life Without Limits!

www.ucp-oc.org/donate