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:
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!
Italian 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!
Lance: February 2014
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!
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’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!”
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.
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.
January 2014: Kolby
“Gotta say hello to the ladies!”
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’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!
We posted this on our Facebook page around Thanksgiving, but we think it is worth repeating. Article from About.com
Holidays 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.
College Students Making a Difference for Children with Disabilities this Holiday Season
Sixteen students at the University of Georgia are helping to make sure children of all abilities can enjoy the holiday season– by creating toys specifically designed for children with motor disabilities. The students are taking an assistive technology class called “Geeks With a Cause,” a part of the university’s Freshman Odyssey program, which pairs small groups of first-year students with professors teaching specialized topics.
The toys crafted by the students included larger controls and switches, making it easier for the children to play with them. One young girl with limited muscle control received a toy with adapted switches, which she was able to use to turn the toy on and off. “For her to be able to do something functional, for her to be able to do that; this is very exciting,” her mother said.
The adapted toys brought joy and tears to the toy recipients and their families, and touched the lives of the students in the class. Click here to read more!
One Parent’s Tips for the Holidays
Part of My Child Without Limits’ (MCWL) work is to help support its online community of parents and caregivers who share their ideas, experiences and inspiration with each other. One mother recently shared her tips to help parents of children with autism navigate the holidays. These tips include not going overboard with the decorations and shopping, finding help way in advance for parties, remembering the meaning of the holiday season and more. You can check out these tips by clicking here, and United Cerebral Palsy (UCP) and MCWL wish everyone a happy holiday season!
Giving Tuesday- Thank You!
On Tuesday, December 3, 2013, UCP-OC joined a call to action celebrating a day dedicated to giving. Begun in 2012, #GivingTuesday is a movement to create a national day of giving at the start of the annual holiday season, and follows Thanksgiving, Black Friday and Cyber Monday. #GivingTuesday proves that the holidays can be about both giving and giving back. It celebrates how Americans can do more with their wallets than just shop – and that we Americans can give as good as we get. See our holiday story here.
Thank you to everyone who helped support this year’s #GivingTuesday. Its success would not have been possible without you!
We Want to Hear From You
We love to share our families’ success stories. You can share these with Elizabeth Eckman, UCP-OC’s Marketing & Development Coordinator, at firstname.lastname@example.org. Tell us how you and your child live your lives without limits! Your stories could be featured on UCP’s websites, social media or in other UCP campaigns. We’ve already heard from many of you, so stay tuned to see more amazing stories and photos!
As always, we encourage everyone to visit our Facebook page and website. If you ever have any comments or questions, please feel free to contact Elizabeth.
December 2013: Brooke
Brooke ended her first evening at the Friday Night Club telling us she met a friend; something we had never heard her say before.
At 15 months of age, we learned our daughter Brooke would have challenges ahead of her. Now 16 and with a diagnosis on the autism spectrum, social interactions with peers are often difficult and distressing for her, many times leading to seclusion. As she entered her teen years, Brooke saw her sister socialize with friends and wanted to participate in “teenage” activities, but it was difficult to find a place where she would fit in. We knew there were many teens for Brooke to meet, there was just nowhere for this to take place. As parents, this affected us deeply. Then two years ago, through United Cerebral Palsy of Orange County (UCP-OC), we heard about the Friday Night Club.
Friday Night Club opened Brooke’s world. This bi-weekly event is a place where teens with disabilities feel welcomed and accepted. It gives teens with or without disabilities the opportunity to play games, watch movies, sing karaoke and simply spend time with one another in an inclusive and fun environment. Friday Night Club gives teens with special needs something to look forward to.
Every person deserves a place to belong and friends to share in their journey, and Brooke now has that. This club brought out positive emotions in Brooke we had never seen, and more than anything we see self-confidence. In addition to Friday Night Club, Brooke looks forward to UCP-OC’s therapeutic fitness and music classes, as well as respite with a trained UCP-OC employee, which also gives us a much needed break. UCP-OC has given our daughter a home.
With your help, Brooke can continue to look forward to Friday Night Club and the other UCP-OC services she and nearly 4,000 Orange County children and families utilize throughout the year. The Friday Night Club is just one of the many programs UCP-OC offers to end the isolation that so many children and teens with special needs feel. Programs at UCP-OC serve the critical developmental, social, and emotional needs of children and teens with disabilities and provide much-needed support to parents and caregivers, including education and skilled childcare.
We invite you to join us in giving back to UCP-OC this season in gratitude for all UCP-OC has done for our daughter and her new friends. We are grateful for a place where teens can feel accepted for who they are.
UCP-OC relies on your generosity to fill these critical gaps in services. Children, teenagers and young adults with special needs are a growing demographic in Orange County, and are often isolated and overlooked. Together we can foster friendship and acceptance for all children with disabilities in Orange County. Please help children and teens live a Life Without Limits by sending in your gift or going online to www.ucp-oc.org/give today.
Thank you for making a difference in the life of Brooke and her friends at UCP-OC.
Hilary & Mark Kershberg