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.

2014 Case for Inclusion

2014 Case for Inclusion Launching Today!
The 2014 Case for Inclusion report is being released today! The annual report tracks the progress of community living standards for Americans living with intellectual and developmental disabilities, and is available online at UCP National’s interactive website. Check it out to see how your state fared this year, how higher-ranking states are achieving their success, and how you can use the Case for Inclusion to advocate for change.

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!

Learning the Language of Advocacy & Behaviors – Parenting Classes

IEPs & 504 Classes

Do you wonder how to start the IEP or 504 process?  Have you been told that your child doesn’t need an assessment or accommodations?  Do you attend IEP or Section 504 meetings and feel confused and overwhelmed by the process?  Do you struggle with educational jargon?  Do you feel that you are constantly asking the school the same questions?  As a parent, guardian or family member of a child with differences, you can find yourself agonizing over how best to support your child/student.  You worry about getting the right information about the specific disability, therapy/intervention, testing and education.  These classes are specifically designed to help you explore ways to become informed participants in your child’s journey through the special education process and assessments.  Learn ways to collaborate to reduce and remove conflicts by advocating using the language of special educators and therapists.

Find more information on our available IEPs & 504 classes and how to register by clicking here.

INTRODUCTORY EVENING 3-WEEK COURSE
Thursday Evenings
6:00PM – 8:00PM

April 17- May1 2014

ADVANCED EVENING 5-WEEK COURSE (Intro is NOT a prerequisite) 
Tuesday Evenings
6:00-8:00pm
March 11 – April 8, 2014

Thursday Evenings
6:00 -8:00pm
May 8 -June 5, 2014

                                                               

Helping the Behaviorally Challenging Child

“Taking Debra Ann’s Helping the Behaviorally Challenging Child class at UCP-OC has been transformative in my relationship with my daughter Chloe. Her recent diagnosis of ADHD put a name to what we were experiencing, but it did not provide answers about how to manage her sometimes difficult behaviors. In Debra Ann’s class, I learned that it is not her will that is lacking; it’s a lagging skill that results in challenging behaviors. I have learned how to identify triggers to these behaviors, as well as when and how to address them – both of which are critical. This class gave me the confidence and tools to address her behaviors while modifying my own as well. I highly recommend the class to anyone that is having challenging issues with their child. It’s an incredibly empowering experience, and I am so grateful!” – Katie Tarantino

A 5-week course for parents, teachers, guardians and caregivers of children, teens and young adults with difficult-to-manage behaviors.  Whether you have a child who “melts down” for inexplicable reasons, a child who “shuts down” and withdraws, a child who lashes out, or a child that you simply don’t understand, learning a new way of communicating with your child – even your adult child – can make an incredible difference.  You’ll help your child with: Meltdowns, communication concerns, thinking about others, flexibility, planning, decision making, and more!

If you have tried traditional behavioral methods without success, you’ll be pleased to know there’s an option.  If you really don’t have a method and are “winging it,” you’ll find what you need here.

If you’ve tried implementing sticker charts and rewards and punishments and tried bribing and pleading and yelling and more; there is an option that cuts through all the parenting “tricks” and brings you into a working, calm relationship with your child.

There’s no “magic” about it; just a new way of thinking and communicating.  This method will work whether or not your child has a disability, and has been successfully implemented by parents, teachers and professionals of children with ADHD, autism, Asperger’s, Down syndrome, bipolar disorder, OCDE, cerebral palsy and more.

To learn more about this class and find out how to register, please click here.

INTRODUCTORY EVENING 5-WEEK CLASS
Thursday Evenings
7:00PM – 9:00PM
February 27 – April 32014

ADVANCED EVENING 4-WEEK CLASS (Intro is a prerequisite)
Tuesday Evenings
7:00-9:00pm
May 6 – May 27, 2014

                                      

Kids Guardian Workshop

Wednesday, March 12, 2014
6:00 pm to 8:00 pm             

Most parents don’t realize that by not naming guardians that their kids could end up in foster care and a judge would choose who would raise their kids (and it may not be who they would want).  That’s why we present the Kids Guardian Workshop, where parents will discover how to:

  • Make sure their children never spend even one moment in the care of strangers (or anyone they wouldn’t want) if anything happens to the parents.
  • Avoid the expenses and delays of a long, drawn-out court process that would make life difficult for loved ones if the parents were in an accident.
  • Protect their children’s inheritance from creditors, lawsuits, and failed marriages.
  • Make sure their hard-earned money is immediately and privately available to their chosen guardians.

Presenters: Josh & Laura Meier, UCP-OC parents and owners of Meier Law Firm.
Please RSVP to Debra Ann Afarian dafarian@ucp-oc.org  

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. 

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

UCP-OC Names Deborah Levy as President & CEO

ImageThe Board of Directors of United Cerebral Palsy of Orange County (UCP-OC) has announced the appointment of Deborah Levy as its President and Chief Executive Officer.  Levy has more than two decades of experience advancing children’s non-profits throughout the country.  Levy currently serves as the Chief Executive Officer for the Orange County Ronald McDonald House® and a senior member of the executive management team of Ronald McDonald House Charities of Southern California, the largest Ronald McDonald House Chapter in the United States.  She will begin her new position at UCP-OC on February 17th.

“The Search Committee unanimously recommended Levy as the new CEO. Levy is a proven leader with a record of success in managing charitable enterprises. She has the right combination of vision, skill, and leadership. Most importantly, her love for children and helping children with disabilities makes her the ideal leader for UCP-OC. We are fortunate to have her as our new CEO, and we’re excited to see the organization grow under her leadership,” said James Corbett, Board Chair of UCP-OC.

Deborah Levy is widely recognized within Ronald McDonald House Charities® for defining the standard for program excellence.  Under her leadership, the Orange County region is fiscally and programmatically strong.  She has a proven ability to produce mission-driven success year after year with strategic vision, Board collaboration, and dynamic leadership of staff and volunteers. With a career that started as a news anchor for various CBS television affiliates across the country, Levy brings twenty-three years’ experience as a professional public speaker, enhancing local and regional organizational brands and images.  Additionally, Levy has helped raise tens of millions of dollars for various children’s charities in North America.  A children’s champion, Levy first served as a volunteer and member of the Board of Directors for Ronald McDonald House Charities® chapters in Florida and Nevada from 1997 to 2003.  Levy holds a B.S. degree in Political Science from UCLA.

“Helping children has been a personal mission for me my entire adult life.  I am profoundly moved by the important work being done at UCP-OC.  It is a testament to the extraordinary leadership of the staff and Board.  I am honored to be asked to become the next leader and look forward to building upon UCP-OC’s success as we look toward the future,” said Deborah Levy.

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.

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