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:

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Child of the Month: April 2014

Granden: Impact Update!

Granden age 4For 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.

 

Granden’s original story & video is at: http://www.ucp-oc.org/granden.

Child of the Month: February 2014

Lance: February 2014

Lance in Speech Therapy at UCP-OC
Lance during Speech Therapy at UCP-OC

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!

Lance with Brother
Lance with his brother Clayton

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 Child of the Month and Family

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 eeckman@ucp-oc.org  for more information.

Debunking Respite Care Myths – A look into UCP-OC’s Respite Care Program

Did you know that UCP-OC can be your respite care provider?
As a RCOC recognized professional respite agency, UCP-OC currently provides respite care for 330 throughout Orange County. Our 107 respite caregivers have an annual accumulation of 46,273 hours!

What is Respite?
According to the Regional Center OC, the state of California will provide respite care to provide caregivers the occasional relief they need. Respite care is many times provided by a vendor agency (UCP-OC) to give the family a worker with special training that equips them to deal with children or adults with challenging behaviors.

Do you go on date nights? Many times date nights for parents with special needs children seem out of reach. Respite can save marriages by giving parents an opportunity to re-connect on a date night as well as providing childcare support or even time to go grocery shopping! It provides relief by pairing a trained, adult caregiver with their child.  With their UCP-OC caregiver, children are able to pursue activities outside the home in addition to having a safer and more enriched experience when their parent is away.

3 Common Myths and Misconceptions:

Myth: Respite is only provided in the home setting
Truth: We are able to transport into the community, take to therapy, attend recreational classes, pick up and take to school (exceptional cases)

Myth: Respite is only if you need it.
Truth: Respite should be used regardless of need, and should be used because a parent/caregiver wants a break from care giving of someone with special needs. Regional Center should offer every consumer; the number of hours/ share of cost is individualized (Medicaid waiver is an option and should be discussed with families.

Myth: Respite is just for general relief.
Truth: There are a variety of ways Regional Center can issue a respite contract. For example but not limited to:

  •  Respite: General relief (hours based on need)
  • Respite as Daycare, Support Services, in lieu of childcare: This is generally used for working parents whose child is not enrolled in a daycare program, regardless of the time (based on proof of daycare need)
  • Respite as Exception: This is used to issue families, generally a 1 time, addition of hours to cover a particular need.  Medical procedure, no school, parents are out of town, etc.

What to expect with your UCP-OC Respite Worker:
All respite workers go through ongoing trainings and certifications for the following: CPR & First Aid (to be renewed every 2-3 years), seizure awareness, child abuse/neglect recognition and reporting, HIPAA, Blood borne pathogens, communication skills, cycle of grief, sign language, use of assistive technology, toileting and transfers, behaviors and positive reinforcements along with the ABC’s of behaviors—along with much more. UCP-OC continues to add to its trainings as opportunities present themselves and as the need arises.

UCP-OC is a professional respite agency; and although we do not provide behavioral respite or work on behavioral goals, we are many times viewed as behavioral respite due to the strengths and skill sets of our team. Our employees ensure behavioral goals and respite are fused into the service we offer. Our staff work on ADLS (All Daily Living Skills), provide sibling support (allows parents to reconnect), offer basic help with homework, provide light meals, encouraging speech, encourage age-appropriate behavior, increased functional skills, decrease mal-adaptive behaviors, and increase and encourage socialization.

Will you be our Valentine?

Will you be our valenting

Your love lasts longer than roses, and is sweeter than candy.
This Valentine’s Day give the gift of a Life Without Limits!

Together we can create a Life Without Limits & provide children with disabilities the critical services they require. 
Children are the heart of our organization. Will you share your heart with them?

Thank you, from the bottom of our hearts!

Learn more about the children above or make a gift at http://www.ucp-oc.org/kolby. 

Child of the Month: January 2014

January 2014: Kolby

“Gotta say hello to the ladies!”

UCP-OC Physical_and_Occupational_Therapies
Kolby and his mother, Danielle.

Kolby is a 6 year-old charmer who already knows the value of making the rounds to say hello to the ladies.  If his charisma and drawing personality doesn’t get you, his smile will. Kolby’s infectious grin will turn any day around! Three years ago Kolby entered UCP-OC’s doors suffering from very tight muscles that make it difficult to do even the simplest movements we take for granted.

Kolby has a genetic disorder known as chondrodysplasia punctata x-linked recessive. One of the symptoms of this disorder is cervical stenosis of the spine (narrowing of the spinal canal).  In fact it was so narrow that it was compressing his spinal cord 60% at the C-1 vertebrae level. He was able to have surgery to correct the compression, however the damage done is what he has to battle every day.

As a part of his “battle team” are UCP-OC Therapists, Lisa Kerfoot (PT), Frances (OT) and Cori (PT).  When first coming to UCP-OC Kolby was not able to use a walker to get around but had to rely on someone else to move.  At UCP-OC, therapy is play based and his PT and OT appointments include having him walk around the office in his walker greeting everyone, activities that make him reach  and stretch his arms and torso such as playing with cars, games and activities that work on his balance and encouraging him to walk on his own. Since coming to therapy he uses his walker everywhere and he just took his monumental first steps without his walker!

Kolby and Physical Therapist Cori.
Kolby and Physical Therapist Cori.

Kolby’s mother, Danielle, says that she is “constantly encouraged by the other families in the lobby and has found comfort in hearing other families’ journeys. Kolby loves coming to UCP-OC and looks forward to his play time with his therapists.”

UCP-OC intrigued Danielle not only for the superior Therapy, but also for the variety of services UCP-OC provides the community. Specifically speaking, she was very interested in UCP-OC’s recreational classes after school. These classes encourage fitness and explore a child or teen’s creativity through painting and drawing. It also gives them an avenue for important social opportunities that are not commonly offered for children with disabilities. This past fall Kolby participated in soccer through the VIP program in AYSO and he was able to score goals and earn his first trophy!

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

The Holidays with a Special Needs Child (part 2)

We posted this on our Facebook page around Thanksgiving, but we think it is worth repeating. Article from About.com

Special Needs ChristmasHolidays have always been times that families join together to share in traditions. Family traditions promote positive emotional development in children. They help children feel connectedness to others and develop a family’s sense of identity. Whether your family is traditional, blended, or non-traditional in any way, traditions can build relationship and strengthen bonds to last a lifetime. Your family can be creative in accommodating special needs in your traditions.
Traditions can be as traditional or diverse as families themselves. Consider each family member’s needs and values. Think about values you want to promote as part of your family’s identity. When your family includes children or adults with special needs, it is important to choose activities that everyone can enjoy. It is also important not to feel as if you have to do things the way everyone else does if it would be stressful or difficult for your family. Doing what works for you can reduce stress and helps create memorable traditions that everyone in the family can enjoy.

Tips for Developing Traditions with Special Needs Children:

  • When planning a meal for a child with food allergies or other special diet needs, try to offer several choices of special foods for the child if possible. Serve the special foods in festive dishes so your child sees his food as special too.
  • Share special family stories and memories, and be sure to include the special needs child as well as others.
  • If your child has difficulty sharing stories because of language issues, allow him to show pictures of happy events or times that were special for him.
  • Consider doing something special for others as part of your celebration. Have each person donate used items to charity, make a donation in the family’s name, donate food to a homeless shelter, or make cookies for neighbors.
  • Have each person share something they are thankful for, or share something they appreciate about the family. Again, help children with language issues share so that others can understand.
  • Read stories about the holiday together. Choose books with illustrations and words that your special needs child can understand.
  • Be sure to take pictures of everyone, and display them for everyone to see. After the celebration, help family members place photos in scrapbooks.
  • Watch a holiday movie together.
  • Include your children in decorating for the holiday. Provide your child with some appropriate choices for decoration, and allow her to choose what to display and where.
  • Allow your child to participate in food preparation, setting the table, and clean up as her ability levels allow.
  • Hold family meetings to plan activities and get everyone’s ideas for traditions.
  • Include your child in making invitations and sending thank you notes. If your child has writing difficulty, allow him to use stamps, color designs or images, or decorate with embellishments that are appropriate for his age and developmental level.
  • Keep realistic behavior expectations, and plan alternative activities for your child when she needs a break from others. Know your child’s limits, and ensure adequate nap time or time away from the noise and stimulation that sometimes comes at family gatherings. Learn other ways to manage behavior at family gatherings.

Child of the Month….and Volunteer of the Month

November 2013: Andrew & Natalie Cernius

With Thanksgiving coming up, we have much to be thankful for this month of November. We would like to kick off our month of thankfulness by featuring Andrew Cernius as our Child of the Month and Natalie Cernius as our first Volunteer of the Month!

We could not be more excited to feature these two wonderful people and the immense impact they have made at UCP-OC and alongside UCP-OC.

Andrew is 19 years-old and is the third child in the Cernius family. IMG_20131017_194249Andrew has autism and comes to UCP-OC for recreational classes. “He participates in Drawing and Painting and absolutely loves it and the new teacher is fantastic!”says his mother Poita. Recently he has gotten a job at Creative Solutions for Hope in their mailroom, which both he and his parents are very proud of. He loves bringing home his paycheck!

Andrew is also the founding member (and inspiration) for the Friday Night Club, something we have all grown to love at UCP-OC!  As the third child, Andrew became very close to his older siblings, and as they left for college his younger sister Natalie saw that Andrew was left without his friends. With this as her driving force, Natalie set out to create a time for teens with special needs like her brother to socialize with their peers, make friends and just have fun.

This November 21st Natalie will be honored by the National Philanthropy Day Board who is awarding her with the Outstanding Youth Award for the creation of the Friday Night Club and other philanthropic work throughout the community. More rewarding to Natalie and her family is what happened this past weekend. The Friday Night Club started 2 years ago, and this past Friday’s Halloween party attracted over 200 teens with special needs and typical teens that volunteer at the event.

Thank you Natalie for your idea to start this, and thank you Andrew for being her inspiration. With this idea UCP-OC been able to create a program for teens that is changing lives.

Drawing and Painting Class
Thursdays, 6:30pm
To sign up for Drawing and Painting Class please contact Cindy Escobar at cescobar@ucp-oc.org  

 

To find out more about the Friday Night Club and hear a teen’s story stay tuned for December’s Child of the Month with video!

Natalie and Andrew 

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.

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