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.

UCP SmartBrief & My Child Without Limits

UCP SmartBrief


Disability Update:
Judge says NYC emergency plans inadequate for people with disabilities
U.S. District Judge Jesse Furman ruled that New York City’s emergency planning is inadequate to accommodate people with disabilities and the city is in violation of local and federal laws, including the Americans with Disabilities Act. Furman said the city’s plans do not ensure evacuation of people with disabilities, do not provide sufficiently accessible shelters, and do not do enough to inform people about accessible emergency services. The class-action lawsuit was brought by local disability-advocacy groups after Tropical Storm Irene in 2011. The Wall Street Journal (tiered subscription model)

Children with autism are more prone to gastrointestinal problems
In a study involving almost 1,000 2- to 5-year-olds in California, researchers found that gastrointestinal issues, such as diarrhea, food sensitivity and constipation, were six to eight times more prevalent among children with autism than those without the condition. “GI problems may create behavior problems, and those behavior problems may create or exacerbate GI problems,” lead author Virginia Chaidez wrote in the Journal of Autism and Developmental Disorders. HealthDay News

Assistive Technology
Children with autism are more prone to gastrointestinal problems
In a study involving almost 1,000 2- to 5-year-olds in California, researchers found that gastrointestinal issues, such as diarrhea, food sensitivity and constipation, were six to eight times more prevalent among children with autism than those without the condition. “GI problems may create behavior problems, and those behavior problems may create or exacerbate GI problems,” lead author Virginia Chaidez wrote in the Journal of Autism and Developmental Disorders. HealthDay News

DOT rules to make airport kiosks, airline websites more accessible
New U.S. Department of Transportation rules will require airline websites and airport kiosks to be accessible to people with disabilities. Airlines will be required to make their website pages with key travel information and services accessible to people with disabilities within two years of the rule, and at least 25% of airport kiosks used for such services as printing boarding passes will be required to be accessible within 10 years. Forbes

Transitions
Minn. district switches to inclusion model for students with disabilities
St. Paul Public Schools in Minnesota has closed most of its learning resource centers and placed students with behavioral and emotional disabilities at their home schools to have more interaction with their peers. The change has given most students a chance to be in a regular education classroom. Some student advocates and teachers raised concerns, such as not having enough aides and special-education teachers to co-teach in every classroom with students with disabilities. Pioneer Press (St. Paul, Minn.)

Adding sensory elements to stories can enhance learning
Incorporating sensory experiences, such as feeling a drop of water or smelling a favorite scent, into stories can help enrich learning for all students, says special-educational needs and disabilities consultant Joanna Grace. In this blog post, she shares specific ways sensory stories can be used with a range of student populations, including students with sensory-processing disorders and other special needs. The Guardian (London)/Teacher Network 

UCP News
2013 Design- athon a huge success!

Held in partnership with U.K.-based Enabled by Design and Futuregov, the Design-athon is an international innovation event with a focus on disabilities. More than 100 hackers, designers and inventors came together at the Design-athon to hear from experts, discuss the issues surrounding the need for more accessible, attractive and easier-to-use products for people with disabilities, and to build functional, scalable prototypes. Learn more about the Design-athon and how you can get involved!

World Cerebral Palsy Challenge final results announced
The final fundraising results from the second annual World Cerebral Palsy (CP) Challenge, an international awareness and fundraising campaign for people living with cerebral palsy and other disabilities, were recently announced — and they are amazing! More than $180,000 was raised in the U.S., and $1.6 million was raised worldwide. More than 1,900 individuals from five different countries participated in the World CP Challenge, making it a huge success. Thank you to everyone involved, and we hope to see you again next year! Learn more about the World CP Challenge.

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My Child Without Limits

Giving Tuesday

This year, on Tuesday, December 3, 2013, UCP and My Child Without Limits are part of a call to action celebrating a day dedicated to giving. Charities, families, businesses, community centers, students, retailers giving_tuesdayand more will all come together for #GivingTuesday – a movement to celebrate giving and encourage more, better and smarter giving during the Holiday Season that we are proud to be part of.

Since the beginning UCP-OC has relied on support from its community members to continue serving the children and families in Orange County.  #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.

Mark your calendar for #GivingTuesday or click here to donate today.

U.S. Preterm Birth Rate Falls But More Can Still Be Done
According to a report released by the March of Dimes, in 2012 the nation’s preterm birth rate was 11.5%, a 15-year low. While it is better than in previous years the U.S. received a grade of C and was ranked 131 out of 184 countries worldwide. There is still very far to go in decreasing the U.S.’s preterm birth rate. Beyond statistics about the numbers of births, the report focuses on the reasons behind the rate and strategies for prevent- including reducing smoking and increasing health insurance coverage among pregnant women.

Click here for full results of the March of Dimes Global Action Report.

Click here for more information about premature births including common associated health problems and treatments from MyChildWithoutLimits.org.

Trying To Teach Empathy Through A New Video Game
quandaryMIT’s Education Arcade and the Learning Games Network created a new free game called Quandary with the idea of engaging kids to start thinking. Quandary approaches the broad topic of ethics by helping students understand how to take a different perspective and learn how to empathize.

As a player you are the captain on an Earth colony on a distant planet charged with the survival of your crew and residents. In order to understand the situation you must interview different characters and organize the information you get in to facts, solutions, or opinions, and then act. The game allows players to experience a diverse set of character viewpoints. Gamer creators believe “The game offers a unique decision-making mechanic, one where the choices and outcomes available to players are not a binary ‘good or bad’, and where there are no easy, right answers.”

Creators are careful to say the game doesn’t teach ethics, per se. Instead they “…see games as an organized space for playful exploration and through the process people encounter and form new ideas and concepts, they begin to construct knowledge.”

Quandary has a new iPhone and Android app that offers the same experience as the web-based game and are available for free. Check out the website for more information and to download the game.

Other interesting news:

Child of the Month: August 2013

August 2013: Joshua

yearofthedragon.3Becoming a parent of a preemie transformed who I am at my core. Seemingly everything was taken out of my control; my impossibly tiny child was surgically removed from me 14 weeks early.  It was the first time I heard the term, “micro-preemie.” Joshua was born into this world in critical condition and remained so for months. Nothing in my motherhood bag of tricks could ever prepare me for this terrifying journey we were embarking upon.

I was finally able to see my Joshie 2 days after he was born. Every single part of Joshua was underdeveloped and fragile. At first sight, my instinct was to wrap him in my arms and protect him and yet, caressing or touching him gently would have physically hurt him.  It would be 6 days before he felt the love and warmth of being held skin to skin with his mother.

When the doctors met with David & I about Joshua, we were told there was the potential for bleeding in the brain (which Joshua did develop), a hole in his heart, respiratory distress and failure, life support, being deaf and/or blind, cerebral palsy, developmental delays, autism, seizures, severe developmental delays, spending his life in a wheel chair, being ventilator dependent, with severe cerebral palsy…should he survive.

Throughout our journey, I was so proud that my son continued to fight. Joshua was fighting a battle that I couldn’t fight for him. He was fighting and I needed to be his cheerleader. I needed to advocate for him, pray for him, and support him. I needed to pump, needed to be strong, and needed, above all, to believe that he was going to come home.

Joshua spent 129 days in the NICU. During his hospital stay he was diagnosed with metabolic acidosis, respiratory distress, Patent Ductus Arteriosus, anemia, IVH grade IV & III (brain bleed), premature atrial contractions, abnormal newborn screen, apnea of prematurity, at risk for retinopathy of prematurity (ROP), hyperbilirubinemia, umbilical hernia and he had a gastrostomy tube PEG placement surgery.

Joshua is now home with his family, yet the intense need for us to do everything we can to advocate for and support our son has not wavered. Joshua’s success and development is all based now on preventative care.  In collaboration with UCP and Joshua’s wonderful Child Development Specialist, Maria Montano, we feel that we are on the right track in providing our son with the best care possible.  On a weekly basis, Maria provides therapy, reasurrance and positivity…all things both Joshua and I need, and because Joshua is assessed on a weekly basis, any areas of concern are brought to light and any changes noted in Joshua’s development are addressed expeditiously. Due to the amazing support system of Joshua’s family and dedicated specialists like Maria, we are finding success in helping Joshua reach his potential.

Our ship is definitely on a different course than what we ever imagined, but it has allowed us to see the world in a whole new light. I’m extremely proud of the way we have sailed our ship thus far. Most of all, I’m most proud of our Joshua. He held on tight enough even through the worst of the storm until we found our way.

To follow Joshua’s journey from his early start to his current progress, please click on this link:  http://www.joshuadrake.info/

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

Story & experience written by Jenny Reyes (Joshua’s proud momma)

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Child of the Month: June 2013

June 2013: Knightly

Knightly Spring AppealAfter three years of desperately trying to start their family, David and Drexelle learned that they were going to have a baby. “We created a hope for the future and an image of what our children would look like and two days after our son was born it felt as if those were stolen from us” David recalls.

“The nurse picked up our baby, turning him over like a ragdoll, and pinpointed everything on his body that looked like Down syndrome.”

Left with a diagnosis and anxious for a place to go, Regional Center guided the Park family to United Cerebral Palsy of Orange County (UCP-OC) for in-home early intervention services when Knightly was only 1 month-old. Ana Reyes, UCP-OC’s early intervention specialist, entered the Park’s home and started working with Knightly immediately.

The first years of a child’s life are critical to their development. For a child with special needs early intervention is the main line of defense to remain on the track with their developmental goals. In-home services allow UCP-OC to work on Knightly’s goals in his natural environment using tools at the family’s disposal to stimulate the different areas of global development such as fine and gross motor skills, sensory and tactile stimulation and cognitive development.

For Drexelle, Ana Reyes has not just been a specialist for her child, but has helped her through the grieving process. “I look at her and I am inspired. She sits and listens, and is truly an inspiration. She gives me confidence as a mother that I can do this. Most of all, she loves Knightly and that is a gift, especially in the beginning when we were worried if people would love our son. We mourned for what we thought our child was and now we experience what he really is and how beautiful he is.”

With Ana’s dedication, early intervention and the resources UCP-OC provided the Parks, at 9 months Knightly is now on target to meet all his developmental goals and is learning to crawl. UCP-OC is monitoring his development; and remains vigilant and aware of what services he will need to continue thriving.Park Family 2

“We are giving back to UCP-OC this spring in gratitude for all Ana and the organization have provided our family. With help from UCP-OC, Knightly can fight to have a great life, a Life Without Limits.”
–Drexelle & David Park

In-home therapy is a cornerstone of UCP-OC’s robust 60 year history in Orange County. This service enables UCP-OC to reach families who are unable to leave their home either due to lack of transportation or medical frailty of the child. Of the 4,000 families UCP-OC impacts, 20% of our therapy families receive services in-home. Many of whom are low-income families. Funding for early intervention services continues to be cut and your support is needed to guarantee these families are served.

Your gift will help inspire a mother and father and assist a child in fighting for a Life Without Limits.

By sending in your gift or going online to www.ucp-oc.org/give, you can help build a child’s future.

Thank you for making a difference in the life of a child.

Knightly email signature

A Mother’s Reflection on UCP-OC

In a class assignment, one of our parents was asked to describe how parents of children “go through” the stages of grief. After sharing her heartfelt and emotional answer on how she views UCP-OC, we were left speechless and eager to share with our families. We hope you enjoy it and can connect with her feelings. Please leave a comment to share with Adriana!

 I have four daughters. My two oldest have ADHD and my youngest child was diagnosed with Cerebral Palsy. Reading each stage reminded me of the day that I was told of my youngest having Cerebral Palsy. For me it didn’t feel like stages were the best word to describe the emotions it was more like waves. When the doctor first told me it felt like I was standing on the beach seeing this giant tsunami coming right towards me. I looked to the side and saw my three oldest Alyna daughters playing in the sand with their dad making sand castles. I have my baby in my arms and start to run as fast as I can away from the tsunami (shock, denial).  I run towards my family, I saw a little canoe with some life jackets and yell at them to get the jackets on…the same time praying that the wave doesn’t kill us.(fear, anxiety) The wave hit and knocked me down and I couldn’t breath.(depressed, stressed, guilt, hopelessness) I felt like I was drowning, I was kicking and trying to swim to keep my head above water. I had no more strength to keep swimming and I couldn’t breathe. Right before I start to sink God sends a lifeguard. The life guard puts you on his lifeboat and takes you back to shore, talks to you,  gives you techniques you will need, and shows you where to find some answers. You look up and see your baby’s face. It looks like the sun setting on the beach; that moment when the sun hits the water and it’s the most beautiful sight ever. You know that you are going to have to face the ocean of waves again but this time you do research and use all the resource available such as therapy for the baby, support group for the family, online classes etc. You turn around and there it is again, the Tsunami building strength, but the difference is you don’t have a canoe or life jackets, instead you build a submarine. You help your family in and right before you shut the lid to this steel, strong submarine you look straight at the wave and think BRING IT!

 

                                                        –Written By Adriana, mother of Alyna

Please click here to find out how you can make an impact on children like Alyna and mothers like Adriana!

UCP Smart Brief: February

UCP Smart Brief

Disability Update

Children’s skills improve with cell treatment for cerebral palsy
Children with cerebral palsy who received transfusions of donated umbilical cord blood cells as well as erythropoietin and rehabilitation performed better in tests of motor and cognitive function, according to a study in the journal Stem Cells. The most progress was seen in children younger than 3. News.com.au (Australia) (1/31)

Study finds lack of efficacy for psychological, dietary ADHD therapies
A review of 54 studies in the American Journal of Psychiatry showed little evidence that nonpharmacological treatments for attention-deficit/hyperactivity disorder, such as psychological or dietary interventions, can reduce symptoms. Parents should not be discouraged because the findings only “demonstrate that what we once thought worked is more limited and more questionable,” study co-author Dr. Emily Simonoff said. WebMD/HealthDay News (1/30)

Other News

EEOC: Disability-related job bias claims were at record high in 2012
Disability Scoop (1/29)
Bioness’ device gets FDA OK for treating pediatric foot drop
Medscape (free registration) (1/25)
Class-action lawsuit targets lengthy waiting list for group-home placement in Maine
Portland Press Herald (Maine) (1/30)

Assistive Technology

CDC awards $10.2M contract for disabilities research
The CDC awarded RTI International a five-year, $10.2 million contract for research into the causes and prevalence of developmental disabilities, including cerebral palsy. The research will support work by the Developmental Disabilities Branch of the National Center on Birth Defects and Developmental Disabilities. WashingtonTechnology.com (1/28)

Fla. nonprofit offers instruction on iPhone accessibility
The Lighthouse of Broward in Fort Lauderdale, Fla., offers instruction to people who are visually impaired on how to use the iPhone’s accessibility features. The smartphone’s standard features such as navigation, a currency reader and other voice-activated functions make it accessible right out of the box, said Eric Barrette, technology specialist at the Lighthouse of Broward. Sun-Sentinel (Fort Lauderdale, Fla.) (1/29)

Transitions

Minn. schools offer varsity sports through adaptive-sports leagues
Minnesota started an adaptive high-school sports league 40 years ago with floor hockey and now has 1,700 participants in four sports where students with disabilities can compete against other schools and earn varsity letters. Some say Minnesota offers a model for other states and districts. Recent guidance from the U.S. Department of Education called for schools to make reasonable accommodations for students with disabilities in school athletics. Star Tribune (Minneapolis-St. Paul, Minn.)/The Associated Press (1/31)

Wash. focuses on addressing effects of “toxic stress”
Washington state is charting a new path for improving educational outcomes for young children who have been exposed to toxic stress, including deprivation, abandonment, abuse and more. Such exposure can affect brain development and a child’s school readiness, researchers say. State agency officials, researchers and educators are working together to launch and monitor pilot programs in early-childhood settings across the state in hopes of developing a national model. Education Week (premium article access compliments of EdWeek.org) (1/30)

Other News

Ga. city builds park with slides, swings adapted for children with disabilities
The Augusta Chronicle (Ga.) (1/30)

Child of the Month: December 2012

December 2012: Wyatt

This month we are celebrating Wyatt, AND we want to share with you his video. In this video you can see his family’s journey and the difference UCP-OC has made in Wyatt’s life.

Please consider making a gift to UCP-OC this season to make a differentce in the life of a child. You can make your gift at www.ucp-oc.org/give.

Child of the Month: November

November 2012: Wyatt

Four 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.

Cerebral palsy (CP) is damage to the brain that affects the overall muscular skeletal system. For Wyatt this presents itself in very low muscle tone as he has 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 worried would he be able to go to school and have the same opportunities as any child? How do we as a family support him? The years for early intervention are critical, and we didn’t know where to begin.

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 began to see a disconnect. His care was fragmented.  Therapists were not talking to each other about what Wyatt needed, and he began to stagnate and regress in his abilities. Our dreams for him seemed out of reach as we saw the opportunities for early intervention fading because we were going to the wrong places.

With a sigh of relief, last year we found a center where Wyatt receives all the services he needs in one place; a place with clinical and social support; a place that could answer our family’s questions, a place that feels like home. We found United Cerebral Palsy of Orange County (UCP-OC).

One year later, and Wyatt is making progress at UCP-OC! Wyatt receives physical therapy that is helping him to walk confidently on his own, go up and down steps and keep up with those around him. Occupational therapy helps 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.   

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 as can ask for.Without UCP-OC Wyatt would not be making the strides he is, and would have difficulties interacting with other children. Our fears would have become a reality if it was not for the intervention, care and therapy from UCP-OC.

We have new hopes and dreams for Wyatt, and we are seeing these become a reality with the help of United Cerebral Palsy of Orange County. Wyatt has a bright future of more growth.

Will you please join with us in making a gift to UCP-OC, to make a difference in the life of a child, like our Wyatt? Your donation will help make this happen. By sending in your gift or going online at www.ucp-oc.org/give, you can make an impact on a child’s life today.

Thank you for making a difference in the life of our child.

Jemileth & Mark Dipko
Proud Parents of Wyatt

PS: Please give what you can to support a child, a family and a community. Send your donation to UCP-OC today!

Surprising Gifts

We have had some very fun and exciting gifts that have involved our children in the past few months that we wanted to share with everyone!

  1. Wyatt’s Birthday Party: For Wyatt’s 5th birthday in lieu of presents, his parents asked that guests bring in donations for UCP-OC and the Shea Center both of which are organizations that have made a difference in Wyatt’s life. Wyatt’s birthday party was Angry Birds theme, and his mother designed a box for the donations to be placed in. When Wyatt presented the gifts to UCP-OC he said, ““I want to share my birthday presents to help other kids like you…[then corrected himself and said] like me.” Is your heart melting? Ours definitely are! 
  2. Wedding: This past September we celebrated the marriage of one of our children’s parents. They very humbly told their guests that they were not in need of presents, but that UCP-OC and CHOC have played a vital role in their child’s life. Similarly to Wyatt, they requested that their guests in lieu of presents make a donation to UCP-OC. This has spread the word about UCP-OC and how it is impacting lives throughout Orange County. We were so honored to receive these generous gifts.
  3. Citizens Business Bank Golf Tournament: Abby welcomed a visit from Citizens Business Bank today with a donation of $5,000 from their golf tournament benefitting UCP-OC and other OC charities.–Abby’s mother is alsostarting a UCP-OC Parent Committee to assist with planning for our Gala in May. If you would like more information on the committee please contact Elizabeth Wylie ewylie@ucp-oc.org.
    Pictured: UCP-OC CEO Cathleen Collins, Arthur Bergmann and Abby

     

  4. Family Gifts: Liam and Gianna had a few gifts to deliver to UCP-OC from family friends and then a matching gift from their grandparents! Thank you Liam, Gianna, and your family for supporting and believing in UCP-OC. If you would like to read Liam’s Child of the Month post please click here.