Spotlight: Nathan’s Life Without Limits with Respite from UCP-OC

At United Cerebral Palsy of Orange County (UCP-OC), our vision of a Life Without Limits for children with disabilities is central to all that we do. In addition to providing the therapies and resources children with special needs require to achieve their full potential, UCP-OC seeks to improve the quality of life for families like Nathan’s. This is Nathan’s story.

Nathan at 18 months old.

As an infant, Nathan was delayed on all developmental milestones. Shortly before his 2nd birthday, he was diagnosed with athetoid cerebral palsy. At 6 years old, non-verbal and exhibiting self-stimulatory behaviors such as staring intently at the ceiling fan, Nathan was also diagnosed with autism.

Nathan and his parents, Derrick and Julie, have found a great support system in family, friends, and their local community. One thing Julie was missing, though, was time to herself. She felt strongly that since she works full-time as a teacher, she needed to spend all of her free time with Nathan.

Then, when Nathan was 15, Julie was introduced to UCP-OC’s Respite and Childcare programs, which provide childcare support and  temporary relief to those caring for people with special needs. Yvette Staggs, UCP-OC’s Director of Respite & Childcare, helped Julie to realize that the entire family’s quality of life could be improved with the support of UCP-OC’s skilled, compassionate respite workers. She also pushed Julie to encourage Nathan’s independence.

 “Nathan is a remarkable young man with an endless amount of opportunity. His fun-loving personality makes Nathan a joy to be around.  Nathan’s drive to know more, his desire to increase his independence, and the endless support that surrounds him serve as a reminder of what a Life Without Limits truly means.” – Yvette Staggs, Director of Respite & Childcare

Nathan with his respite worker.
Nathan with his respite worker.

While Julie gets to enjoy musicals like Jersey Boys with her friends and paddle boarding with Derrick, Nathan spends quality time with his current respite worker, Christy. Christy and Nathan go out to lunch or visit the pier. Christy always encourages Nathan to be independent – to feed himself and use the Proloquo app on his iPad to communicate. Julie never has to worry about Nathan, because he always comes home with a smile on his face.

“UCP has given us a great quality of life. From knowing that Yvette is always there to provide support and advice, to the comradery and confidence Nathan gets from time with his respite worker, and the motivation to encourage Nathan’s independence, UCP-OC has made a big impact on our lives.” – Julie

This focus on his independence helped Nathan secure one of 24 coveted spots in a local Independent Living Skills program. Julie and Derrick are grateful to UCP-OC for helping them to realize Nathan’s potential and always pushing them to encourage his independence. UCP-OC is proud of all of Nathan’s accomplishments and to play a significant role in his Life Without Limits.

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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:

February Brave Kids Newsletter

Monthly UCP-OC receives the UCP Brave Kids Newsletter and we then pass it along to our families, friends and professionals throughout the community. Brave Kids, a program of the United Cerebral Palsy National Office, provides a support community and resources for children and youth, ages 6 – 17,  with disabilities and chronic/life-threatening illnesses and their families and caregivers.

Twin Sisters Who are Hearing Impaired Connect with Super Bowl-winning Player

Twin sisters Erin and Riley Kovalcik, who are partially deaf due to a genetic condition, received a great surprise earlier this month when they met Seattle Seahawks player Derrick Coleman. Coleman caught the attention of millions of people, including the nine-year-old twin sisters from New Jersey, when a Duracell commercial featured his journey of becoming the first legally deaf player in the National Football League (NFL). After one of the sisters wrote an encouraging letter to the star player, their father posted a picture of it on Twitter and sent it to Coleman. “Really was great hearing from a friend who I have so much in common with,” replied Coleman. “Even though we wear hearing aids, we can still accomplish our goals and dreams!” Despite his hectic schedule in preparing for the Seahawks appearance in the Super Bowl, Coleman went the extra mile to connect with Erin and Riley– surprising them in-person and inviting the girls and their family to attend the big game. Click here to see the full story!

If you would like more information about hearing loss, visit United Cerebral Palsy’s My Child Without Limits  website.

Firefighter Teaches Safety for Children with Autism

Massachusetts Firefighter Lance Mason is working hard to educate people on fire safety for children with autism. Mason began his program nearly a decade ago, after his now 12-year-old son was diagnosed with autism spectrum disorder. His program raises awareness about how a person with autism may not react to emergency situations the same way as someone without autism would, and how to help them safely. It includes addressing the role of a caregiver in preparing a loved one with autism, home fire safety and more. Click here to read more.

More information related to fire safety and people with disabilities can be found on the UCP National website. Click here to check it all out.

Student with Cerebral Palsy Receives One-handed Flute

Twelve-year-old Melissa Henricks, who has cerebral palsy and difficulty using her left hand, always dreamed of playing the flute, which is typically a two-handed instrument. Kevin Smith, band director at Selvidge Middle School in Ballwin, Missouri, where Henricks attends, helped to make that dream a reality. Together with his wife and school district, Smith was able to create a custom-made, one-handed flute for Melissa. “It’s amazing how wonderful he could be to make this for me,” said Henricks. But Smith did not stop there– he then constructed a new fingering chart for Henricks to learn her new instrument during their winter break! Click here to read more!

Past article you might have missed…Artist Gives New Look to Disney Princesses
disney28n-14-webItalian artist and fashion critic Alexsandro Palombo gives Disney princesses a new look in his latest piece. The characters are portrayed as women with disabilities in various ways, ranging from Princess Jasmine shown as a double amputee to Cinderella fitting her glass slipper on a prosthetic. Click  here to read more!

UCP SmartBrief

Assistive Technology——————

Software helps children with disabilities communicate
Invention Labs has created a picture-based software application called Avaz to help children with cerebral palsy and other developmental disorders communicate. Company founder Ajit Narayanan said the software converts muscle movement into speech using pictures, so a user could put together the words “I like,” then choose a picture of an apple. The Economic Times (India) (1/24)

Ohio district uses technology to remove learning barriers
Some educators in a school district in Ohio praise technologies, such as laptops and tablets, for helping to eliminate learning barriers and increase motivation for students with disabilities. “Any time you can see the kids be more independent and more involved with their peers, you know (the technology) is doing its job,” said Rita Woeste, the district’s technology-integration specialist who taught special education for 29 years. The Advocate (Newark, Ohio) (tiered subscription model) (1/26)

Disability Update——————

Panel recommends ways to improve voting experience
A bipartisan commission urged election officials to give more attention to people with disabilities, expand online registration and allow more early voting to help solve problems of long lines and other difficulties that were seen during the 2012 election. The panel said polling places should have checklists to ensure accessibility and poll workers should be trained on how to help voters with special needs. Disability Scoop (1/24)

Transitions——————

Students learn academic, social skills in greeting-card business
Teachers at a high school in Kansas are using a greeting-card business to teach students with disabilities academic and social skills. While making the cards, students follow verbal and written directions, read work orders, handle money and learn to work as a team, special-education teacher Matt DeMoss said. “My goal while they were in high school, just like any other teacher, was to get them ready for that post-secondary career,” he said. The Joplin Globe (Mo.) (1/23)

N.Y. district transitions to career-focused diploma option
Students with disabilities in the Lansing Central School District in New York who do not earn a traditional high-school diploma now have the option to earn career development and occupational skills credentials. The new path takes the place of the “IEP diploma,” which was available to some students with disabilities in the district until last July. “We’re now focusing more on students leaving our schools work-ready,” Kathy Rourke, director of special education, said. Ithaca Times (N.Y.) (1/25)

UCP News——————-

National call on disabilities treaty, Tuesday
Tuesday, Jan. 28, at 1 p.m. EST, the Convention on the Rights of Persons with Disabilities Community Leadership team will hold a call to develop a national strategy to allow for continued negotiations on the disability treaty. The CRPD was inspired by U.S. leadership in recognizing the rights of people with disabilities, and would provide a vital framework for creating legislation and policies around the world that embrace the rights and dignity of all people with disabilities. RSVP for the call and contact your senators by visiting www.disabilitytreaty.org.

Register now to attend the 2014 Disability Policy Seminar
Early registration is now open for this year’s Disability Policy Seminar in Washington, D.C., April 7 to 9. This event is the biggest and best opportunity for advocates to advance the grassroots movement for people with intellectual and developmental disabilities, and is hosted by UCP, The Arc, AUCD, AAIDD, NACDD and SABE. Register now and book your room at the Grand Hyatt in downtown Washington D.C. for a special early registration rate by visiting www.disabilitypolicyseminar.org. But act soon — the special room rates end March 4.

Ending on a “high-quote”:

“You are never too old to set another goal or to dream a new dream.”
— C.S. Lewis

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

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.

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

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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Child of the Month: September 2013

September 2013: Aya

Aya 1We first met Aya in March 2013 when her family flew “across the pond” from England so that she could receive services from UCP-OC. Aya is almost three years old and has an undeniable smile and the cutest little walker you will ever see!  Her difficulties with balance due to her CP and different medical approach in England brought her family to the states to receive services. Aya’s cousin received services from UCP-OC and insisted that Aya come to meet with our therapists.

During her visit in March, Aya began to walk with the assistance of her walker. She has about the cutest walker we have seen! This past August Aya’s family came to UCP-OC again. The UCP-OC Team has been working on refining the things they focused on the first visit and encouraging her towards walking independently. Aya is a strong clever girl that is determined to work and every day her family wakes up hoping and praying this will be the day she walks!

From the start Aya had difficulty with her balance and depended on her mother  to keep her upright. Throughout her time at UCP-OC, physical therapist Moira strengthened her tone, muscles and worked on other physical weaknesses characteristic of her cerebral palsy.

Her occupational therapist, Kristy, has been working diligently as well on her fine motor skills, as well as  assisting Aya with her ability to be more confident in her environment. Kristy works on these elements to allow her to enjoy all the fun things we have to offer (playgrounds, slides, Disney) by working on her body awareness, sensory regulation and emotional regulation. She is now more confident with using her body to help her explore her environment and she is able to enjoy playing with her sister in all environments. Aya’s treatment also focused on her using her right hand more and improving her fine motor skills.

Aya’s mother says, “UCP-OC has helped Aya clearly become a more confident child, overcoming her fears, working continuously and consistently targeting the weaknesses she ha. she is looking great and her character is evolving through the amazing team she works with!”

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

Aya's Walker
Aya’s Walker
Aya with her sister and therapists Lisa and Kristy.
Aya with her sister and therapists Lisa and Kristy.

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