Spotlight: Tosh’s Life Without Limits with Therapy from UCP-OC

Tosh_Choc_3-19-12
     Tosh in the NICU.

All of us at United Cerebral Palsy of Orange County are grateful for the opportunity to help children with disabilities to achieve their full potential, and we couldn’t do it without support from our community. Two-and-a-half-year-old Tosh is an example of the tremendous impact UCP-OC has on children born with or at risk for developing a disability. Tosh’s birth was far from typical. He was delivered stillborn by emergency C-section after an Amniotic Fluid Embolism took his mother’s life. Miraculously, doctors were able to resuscitate him, but little Tosh spent the first three weeks of his life in the NICU faced with a variety of health issues related to his traumatic birth, including a very high risk for cerebral palsy.

When Tosh was released from the hospital, his father Jody was referred to UCP-OC immediately for early intervention therapy. Tosh received weekly therapy sessions at UCP-OC for a year and a half which focused on strengthening his body to sit, crawl, stand, and eventually walk. Progress was slow at first, but through the dedication of his therapist and Jody’s commitment to his son’s progress, this Miracle Baby has done it again – he “graduated” from our therapy program. He is now considered developmentally typical – walking, talking, and functioning as his two-and-a-half-year-old peers do.

Tosh
Tosh, now developmentally typical, enjoying the beach.

“Without UCP-OC I have no doubt Tosh would have significant developmental delays today. I am grateful every day for the care and treatment UCP-OC has provided to our family.” – Jody

UCP-OC not only provides top-quality care for children with disabilities, like Tosh, but is also an invaluable resource for parents, like Jody. No husband and first-time father expects to mourn the passing of his beloved wife on the same day he celebrates the birth of his son. Add to that the challenges Tosh faced for his own survival, and you can see what an incredibly difficult situation Jody was experiencing. Jody says that “throughout the entire process, I always knew UCP-OC was my partner in caring for Tosh. UCP-OC was a home to us, and the staff a part of our family.” Tosh’s success would not be possible without your support.

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

World CP Day, Child of the Month: October 2013

October 2013: Wyatt

With World CP Day being this past Wednesday, October 2nd we thought it would be fun to feature a very special boy with CP again and give you a bit of an update on what the therapists at UCP-OC are currently working on to make sure he lives a Life Without Limits!   

On World CP Day:

Please join us as we recognize and celebrate the many families and children we serve with cerebral palsy! As United Cerebral Palsy of Orange County, World CP Day is a wonderful opportunity for us to share our appreciation for your support of our organization.  We are honored to serve children with any developmental disability while we pride ourselves on our expertise in treating children with Cerebral Palsy.

We hope this day will lead to many more opportunities to acknowledge and support our families throughout the community that have children with many different disabilities.

We know World CP Day was Wednesday, but here is how you can get involved still:

  1. Post your idea to change the world for people with cerebral palsy!The best ideas will be given to inventors, to turn dreams into reality at www.worldcpchallenge.org
  2. Like our Facebook page, follow us on Twitter and even YouTube Channel!
  3. Share this story with a friend or on your Facebook.

On Wyatt Review & Update:

Five years ago, we noticed our sweet 6 month-old son missing developmental milestones, and we began to search frantically for a cause. Our answer was clear, yet one we struggled to accept. Our son, Wyatt, was diagnosed with hypotonic cerebral palsy.

It is estimated that over 600,000 children and adults in the U.S. manifest one or more of the symptoms of CP. Currently 8,000 babies and infants are diagnosed with the condition each year.

Cerebral palsy (CP) is damage to the brain, occurring during fetal development; before, during or shortly following birth; or during infancy, that affects the overall muscular skeletal system. CP is characterized by an inability to fully control motor function, particularly muscle control and coordination.

For Wyatt this presents itself in very low muscle tone resulting in difficulties balancing and holding himself up; and in his speech, gross and fine motor skills.

Daily life is fatiguing for our son.

With his diagnosis looming over us we were worried. Would he be able to go to school and have the same opportunities as any child? My wife Jemi and I discovered the search for services is multifaceted and complex. After three years of Wyatt receiving therapy at many different therapy offices, we found UCP-OC and were able to breathe a sigh of relief. His care is no longer fragmented and Wyatt receives all the services he needs in one place.

United Cerebral Palsy of Orange County (UCP-OC) is a place with clinical and social support; a place that could answer our family’s questions; a place that feels like home. All therapies are play based to encourage a fun and motivating atmosphere.

Wyatt_TireswingPhysical Therapy: Wyatt receives physical therapy that is helping him to walk confidently on his own, go up and down steps and keep up with his peers. His physical therapist, Cori, has Wyatt ride swings for vestibular stimulation and to work on core strength. On the tire swing he strengthens his core and lower extremities by leaning over to pick up toys on the floor.

Occupational Therapy: OT helps Wyatt with his play and fine motor skills, such as holding a crayon to color and dealing with changing social environments so he can experience his peers to their fullest and to make friends.

Speech Therapy: Wyatt no longer receives speech and language therapy, however many children with CP have difficulties with their speech. Therapists work on strengthening speech articulators (tongue, lip and cheek muscles) as well as breath support to help facilitate speech. Many of the children practice their speech skills with the help of an iPad.

Today Wyatt attends school and participates in the classroom with his friends. He feels like everyone around him, and as a parent that is all we can ask for. We have new hopes and dreams for Wyatt, and we are seeing these become a reality with the help of UCP of Orange County. Wyatt has a bright future of more growth!

Sincerely,

Jemileth & Mark Dipko

Proud Parents of Wyatt

UCP News Brief

Disability Update

Children with genetic disorder may be misdiagnosed with autism
As many as 50% of children with a genetic disorder called 22q11.2 deletion syndrome were diagnosed with autism, but U.S. researchers found that none of the 29 children with the deletion disorder met the diagnostic criteria for autism spectrum disorder. The findings, published in the Journal of Autism and Developmental Disorders, show the need for more accurate assessments for autism among children with the genetic disorder. Disability Scoop (9/19), HealthDay News (9/18)
 
Md. commission to study police response to people with disabilities
Maryland Gov. Martin O’Malley created a commission to recommend training standards and best practices for first responders who handle emergencies involving people with disabilities. The Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities was created in response to the death of Ethan Saylor, who had Down syndrome and was handcuffed by deputies on the floor of a Frederick movie theater after he refused to leave after the show. The Frederick News-Post (Md.) (9/17)
 
Disney to adopt new wait policy for people with disabilities
Disneyland and Walt Disney World are eliminating a policy that allows people with disabilities to go to the front of the line at events and rides because the system was being misused. A new policy, which goes into effect in October, will use a kiosk system that gives people a ticket to go on a ride at a specific time without having to wait in line. Only one ride can be requested at a time. Disability Scoop (9/20)
 

Assistive Technology

Poll: 50% OK with service, therapy animals in restaurants, stores
Only half of Washington state residents responding to a Pemco poll said on-leash therapy or service dogs should be allowed inside a store or restaurant. Pemco spokesman Jon Osterberg said it was surprising that one-third of people said service dogs should be allowed in restaurants and shops but not therapy dogs. “It makes us wonder what’s less tolerable about therapy dogs than service dogs,” he said. American City Business Journals/Puget Sound, Wash. (9/19)
Other News

Transitions

Students learn job skills as elementary-school helpers
High-school students with disabilities at Bonner Springs High School in Kansas are working as helpers at an elementary school as part of a special-education transition program. Students in the program learn independent work skills while performing tasks, such as cleaning library books, filling teacher mailboxes and stacking chairs. “And it is also giving us an opportunity to figure out what they like to do and what they don’t like to do, what they’re good at and what they need a lot more support with,” teacher Tierney Thompson said. Bonner Springs-Edwardsville Chieftain (Kan.) (9/18)
 
Hockey team helps students with disabilities find their place
A hockey club in Montgomery County, Va., is helping students with disabilities learn social skills and self-confidence. Operated by volunteers, the club accepts children of all abilities and helps them access the sport at their level. “There’s a sense of satisfaction when you see a kid with disabilities have the same opportunities the other kids have,” a mother, Mildred Bonilla Lucia, said. The Washington Post (tiered subscription model) (9/15)
Other News
LTSS Commission releases final report
Created to replace the Community Living Assistance Services and Supports (CLASS) program, which was repealed in 2012, the Commission on Long-Term Care recently released its Final Report to Congress. The Commission was established to examine the issues surrounding long-term care, specifically service delivery, the workforce requirements and financing — but did not adequately address how it will be paid for. Learn more about the Commission, the recommendations created by the members who voted against the report, and read UCP’s statement.
 
“Breaking Bad” star RJ Mitte on World CP Day
RJ Mitte, star of the hit television series “Breaking Bad” and Global Ambassador for World Cerebral Palsy Day, has filmed a video in support of “Change My World in One Minute” campaign, which encourages people to come up with ideas that could change the world for people with CP. RJ, who has cerebral palsy himself, urges everyone to participate for the chance to see their idea brought to life. Learn more about World CP Day, watch the video and upload your idea today!
 
What is harder than rock, or softer than water? Yet soft water hollows out hard rock. Persevere.”
— Ovid,
Roman poet

UCP SmartBrief

Disability Update

Virginia Tech clinic seeks new treatments for cerebral palsy
The Virginia Tech Carilion Research Institute has created the Neuromotor Research Clinic to find new treatments for cerebral palsy. A $4.2 million NIH grant will be used for a program that tracks 135 children with CP who will get high-intensity therapy for hemiparesis. The Roanoke Times (Va.) (8/15)
 
Cerebral palsy a risk factor for severe flu-related complications in children
Medical records gathered from 79 hospitals across 12 countries revealed six risk factors for identifying children at greater risk of suffering severe complications due to influenza. The risk factors included dehydration, breathing problems, need for oxygen therapy, heart rate above the normal age-based range, and history of conditions such as chronic lung disease, cerebral palsy and developmental delay. The findings were published in the British Medical Journal. The New Zealand Herald (8/15)
Other News

Assistive Technologies

How iPads make education more accessible to students with disabilities
The range of mobile applications available on the iPad offers many options for students with various disabilities, adaptive technology expert Therese Willkomm said during a four-day iPad boot camp in Concord, N.H. This article highlights some of the apps discussed at the conference, such as TextGrabber, which reads aloud pictures taken of text. Concord Monitor (N.H.) (8/15)
 
Companies ask FCC to exempt e-readers from accessibility rules
Companies such as Amazon, Sony and Kobo asked the Federal Communications Commission to exempt their e-readers from requirements that they be accessible to people with disabilities. The companies said e-readers are not designed or marketed for advanced communications services, but disability advocates disagreed and pointed out that some of the devices are being marketed for school use. Disability Scoop (8/14)

 

Transitions

Some Va. students with disabilities receive incorrect scorecards
Virginia school officials will meet with representatives from education and testing company Pearson to discuss the more than 4,000 incorrect scorecards that were given to students who took the Virginia Alternative Assessment Program. Officials are saying the problem arose when students’ scores were converted into proficiency levels — fail, pass/proficient or pass/advanced. The Washington Post (tiered subscription model) (8/13)
 
Ohio bakery helps workers learn business operation skills
Crumbles Bakery in Poland, Ohio, hired workers with disabilities, providing employment and teaching them how to run a business. Workers participate in all aspects of the business, from packaging and baking to cleaning. WFMJ-TV (Youngstown, Ohio) (8/18)
 
Other News

UCP News

World CP Challenge starts in one month!
Have you registered your team for the World CP Challenge yet? This four-week fitness activity helps to support people with cerebral palsy and other disabilities, and starts Sept. 4 and ends on World Cerebral Palsy Day, Oct. 2. Teams of four challenge themselves to take 10,000 steps a day — and nearly any activity, from walking to biking to yoga, can be converted into steps. Join today to get active and help support a great cause!Help Life Labs make the 2013 Design-athon a success!
 
UCP’s Life Labs is partnering with Enabled by Design to hold the 2013 Enabled by Design-athon, a two-day event dedicated to finding innovative solutions to problems faced by people with disabilities. Through presentations, speeches and active designing, the Design-athon is a great way to jumpstart ideas that make a difference in the lives of people with disabilities. Check out the Life Labs blog to learn more about the Design-athon and how to get involved.
 
Some people grumble because roses have thorns; I am thankful that the thorns have roses.”
— Jean-Baptiste Alphonse Karr,
French critic

Do you have your team?

 

We would like to invite you to participate in the World CP Challenge – an event centered around physical fitness, encouraging personal well-being and teamwork, while supporting the local community.

REGISTRATION is OPEN
www.worldcpchallenge.org/ucpoc

In teams of four, participants track their daily step count by wearing a pedometer, and record their results on the interactive Challenge website. The aim for each team is to reach the summit by the end of the four weeks. There are three different levels to choose from, depending on the fitness level of the team (and how ambitious they are).

The World CP Challenge is not just about walking your way to better health – participants can run, cycle, swim or even play lawn bowls to reach their daily step target. There are more than 40 activities you can convert to steps including activities suitable for people with a disability.

Play this short video below for more details on the campaign.

HOW IT WORKS

Registrations are almost open so please visit http://www.us.worldcpchallenge.org/ucpoc to sign up.

The World CP Challenge runs from 4 September to 4 October 2012. The cost is $25 per adult or $10 per child. Each participant will receive 2 pedometers, a fundraising booklet and gain access to the interactive website once registered.

Please pass on this information to anyone you think may be interested including friends in large and small organizations, schools and community groups.

BENEFITS

Improve your health and wellbeing

Increase motivation

Be more productive

Encourage teamwork

Support the local community

You will be making a huge difference to the lives of children at United Cerebral Palsy of Orange County!

If you are interested or have questions please contact: Elizabeth Eckman, eeckman@ucp-oc.org 949.333.6412

World Cerebral Palsy Day!

 

At long last, the countdown is over, and the day has finally arrived. Today we celebrate the first-ever World Cerebral Palsy Day and the kick-off of the World CP Challenge! These global campaigns are meant to serve as a catalyst for innovative change for the 17 million people living with CP across the globe.
 
“The World CP Challenge and World CP Day provide a great way for people around the world to step up, get involved, and support the approximately 57 million Americans living with cerebral palsy and other disabilities, as well as the estimated 650 million individuals worldwide. By committing to just one month of activities, people can make a lasting difference for those living with and impacted by CP and other disabilities,” said Stephen Bennett, President & CEO of UCP. “I challenge everyone to take part and walk, step, or roll their way to supporting people with cerebral palsy around the world.”

So, what’s in a day?

  • As we celebrate World CP Day, head over to worldcpday.org and submit an idea you have on what would make the world a better place for those living with CP. Afterward, be sure to vote for your favorite submissions. Ideas and voting will be open through September 30. In October a panel will review the most popular submissions and select a number of them to put forth in a global campaign, seeking inventors to make them a reality!
  • Have a Facebook page or blog? Use one of our World CP Day avatars as your profile image.
  • For those participating in the World CP Challenge, don’t forget to clip on your pedometers and log your daily activity! Looking to step off on the right ‘foot’ and celebrate World CP Day? The proceeds you help fundraise will go toward vital services and groundbreaking research to help people with CP.  So spread the word; let everyone know about the virtual mountain you’re climbing and why it’s so important to you and the people we serve. When you log in to the Challenge website, click over to the “Raise Funds” section and you’ll see an area to send a pre-written email and below that, a variety of posters to put up in your office.

Brave Kids–August Newsletter

Does Having a Pet Change Your Child’s Behavior?

Think twice before telling your child “no” the next time he or she begs you for a furry friend. A new study evaluated the association between the presence or arrival of pets in families with an individual with autism and the changes in his or her social behaviors and development. While animal assisted therapies are used widely but their relevant benefits have never been scientifically evaluated. Read more from DisabiltyScoop about the study.

 

 

Are Apps on Your Back to School List?

Transitions back to school are always tough with new teachers, classrooms, classmates and routines. But as with most things, there’s an app for that. Which app is right for you and your child? One collection of apps, made by Panther Technology, are built around principles of Universal Design – to foster inclusion in education through access. Panther apps incorporate innovation and intuitiveness while focusing on the fundamentals of reading, writing and arithmetic. To learn more about Panther apps click here.

Or check out some other recommendations for elementary, middle school and high school apps.   

 

World Cerebral Palsy Day and Challenge

This September United Cerebral Palsy, Brave Kids’ parent organization, will be celebrating the first-ever World Cerebral Palsy Day-a kick off to the World CP Challenge, a global campaign promising nothing short of changing the world!

World Cerebral Palsy Day, on 4 September 2012, has the theme ‘Change my world in 1 minute’. People with CP, their family and friends suggest ways to improve the quality of life of people with CP. Each idea is posted on the website as text or video and will only take one minute to read or watch. During September, everyone is encouraged to go online, review the ideas and vote for the concepts that will have the greatest impact on people’s lives. At the end of September, the World Cerebral Palsy Day Panel will select the best ideas, solutions and inventions for people with cerebral palsy. In the following few months social activists, researchers, inventors, and innovators propose how they would make these ideas a reality and financial assistance will be provided to a selected few to assist their project. Check out the World Cerebral Palsy Day website to make a suggestion or to vote on other people’s ideas. 

On September 4 — World CP Day — United Cerebral Palsy is launching an exciting four-week team activity called the World CP Challenge, and we want you to be part of it! It’s a fun and healthy way to improve your fitness while improving the lives of people with cerebral palsy.

The World CP Challenge is a perfect activity for your family, your coworkers or anyone who’s interested in getting fit and supporting United Cerebral Palsy. When you register, you will receive a “Challenge Kit” that will include a pedometer to track your daily step count. Your aim is to climb a “virtual mountain” with your team, and reach the summit by the end of the four weeks. Your progress will be charted on our interactive website.

It’s not just about “walking” your way to better health – you can run, bike, or swim to reach your daily step target. There are more than 40 activities you can convert to steps, including activities suitable for people with a disability. It’s an easy and a fun way to get fit while raising much-needed funds for people with cerebral palsy. Register today.