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:

Life’s a Journey With CP and Me

Hi Everyone!

Katy FettersKaty here, a local college student who is always writing, sharing, and learning about cerebral palsy since I also have CP!

I just recently participated in the World CP Challenge, a global, month-long fundraiser that works to raise awareness and educate participants about CP. In addition, participants dedicate this entire month to their own health and fitness: in teams of four, we climb seven virtual mountains all over world with a pedometer step count! As the leader of Team TeenCP, I am happy to say we completed our second year doing the challenge. This year was more successful for us with steps, but fundraising was a bit difficult due to the competitive nature of the challenge in my community! (What a good problem to have, though.)

While I can’t do as much running and walking as I used to, what is great about this fundraiser is that you can still gain “steps” for your team no matter the activity! Biking became my main mode of exercise for the challenge and I always felt so great after logging in my steps for my team to see our progress! Another plus, is that the CP CP_Challenge_logoChallenge really allowed me to feel more in-tune with my physical health and I have been able to keep up with consistent cardio and strength training because I feel so great after a hard work out! I hope others who did the challenge feel the same way. What I also loved about this year was that the challenge ended on World CP Day (Oct. 2), so as a great send off, I was able to speak toward some young adults that I know who have CP and urge them to share something about their own experience with having a physical disability. What an empowering movement I get to be a part of! Team TeenCP will look forward to a stronger, better fundraiser for the fall of 2014.

My parents, Paul and Carolyn Fetters, owners of The Training Spot in Huntington Beach have supported UCP-OC for quite some time now, and this is the second World CP Challenge that they, their personal trainers and committed clients have also participated in the fundraiser. A gym or fitness center is a great environment to host something like the World CP Challenge because it encourages members and clients to get active for such a great cause (and something so personal to our family.) Overall, we are happy to be a part of the challenge in the coming years because of its positive message, results, and awareness for the local community and UCP-OC. Thanks UCP National for bringing the World CP Challenge to the United States!

Until next time,
Katy

My Child Without Limits: June Newsletter

My Child Without Limits_June Newsletter

Helpful Tips for Raising Healthy Families

With the rising increase in obesity in the United States, it is no wonder mothers are becoming more concerned about raising healthy children. Today’s economy tends to overindulge in fast food restaurants, participating in unhealthy eating habits, and lacking the motivation to stay physically active through daily exercise which eventually leads to future generations of kids who follow in the steps of these harmful lifestyles.

Luckily, there are helpful tips your children and family can benefit from in order to maintain a healthy and active lifestyle. Establishing healthy eating habits at home can be a major contribution in your child’s life by assisting them to prefer healthier options outside of the home as well. Another tip is to make sure your child eats a healthy breakfast every morning and maintains a consistent sleeping schedule. Breakfast in the morning is essential, a child’s brain processes in particular, because it boosts school performance by increasing attentiveness in the classroom. Similarly, getting enough sleep is vital for your child to excel in their academics and to work at their peak performance throughout classes or exams.
When it comes to staying physically active parents should be the number one role model for their children. This tip is valuable because your children will learn the importance of participating in exercise and sports if they watch their parents enjoying it and making it a part of their lifestyle. It is important to try and teach all these useful habits to your children at an early age so they can incorporate them into their daily routines.

To learn more tips about maintain healthy lifestyles for you family check out the full article 10 Tips for Raising Healthy Families

Pediatrics Report Encourages More Motor Skills Screening

According to an American Academy of Pediatrics clinical report Pediatricians should screen children for delays in motor development at 9, 18, 30 and 48 months. The report outlined motor development skills that children should have at each specified age. Diagnosing and treating those problems early on may ultimately improve kids’ outlook and help families gain additional support. To read the entire article click here.

Paving the Way to Kindergarten for Young Children with Disabilities

Entering kindergarten can be a joyful but also an anxious time, particularly for parents of children with disabilities. While some common concerns are shared with all parents, parents of children with disabilities may have unique concerns or questions about what their child’s kindergarten experience will be like and how services are delivered.
 

Amanda Fenlon, EdD, an assistant professor of special education in the Curriculum and Instruction Department at State University of New York, Oswego, has written an article for Reading Rockets to address approaches to this time in you and your child’s life. She suggests using demonstrated best practices for transitioning children with disabilities to elementary school including using a collaborative team approach to involve families, setting transition goals and focusing on the needs and strengths of individual children. Utilizing these will hopefully help make a smoother transition.  
Click here to read the full article.

Reading Rockets is a national multimedia literacy initiative offering information and resources on how young kids learn to read, why so many struggle, and how caring adults can help.

Do you have your team?

 

We would like to invite you to participate in the World CP Challenge – an event centered around physical fitness, encouraging personal well-being and teamwork, while supporting the local community.

REGISTRATION is OPEN
www.worldcpchallenge.org/ucpoc

In teams of four, participants track their daily step count by wearing a pedometer, and record their results on the interactive Challenge website. The aim for each team is to reach the summit by the end of the four weeks. There are three different levels to choose from, depending on the fitness level of the team (and how ambitious they are).

The World CP Challenge is not just about walking your way to better health – participants can run, cycle, swim or even play lawn bowls to reach their daily step target. There are more than 40 activities you can convert to steps including activities suitable for people with a disability.

Play this short video below for more details on the campaign.

HOW IT WORKS

Registrations are almost open so please visit http://www.us.worldcpchallenge.org/ucpoc to sign up.

The World CP Challenge runs from 4 September to 4 October 2012. The cost is $25 per adult or $10 per child. Each participant will receive 2 pedometers, a fundraising booklet and gain access to the interactive website once registered.

Please pass on this information to anyone you think may be interested including friends in large and small organizations, schools and community groups.

BENEFITS

Improve your health and wellbeing

Increase motivation

Be more productive

Encourage teamwork

Support the local community

You will be making a huge difference to the lives of children at United Cerebral Palsy of Orange County!

If you are interested or have questions please contact: Elizabeth Eckman, eeckman@ucp-oc.org 949.333.6412

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 News Brief

This week many of interesting articles have caught my eye, and although I posted a couple of them on our Facebook page I thought I would share them with you all in one place.  A few of these came from the UCP SmartBrief, so as I receive the SmartBrief monthly I will make sure to share it with you on the blog. This is a compilation of the top 10 stories and I thought many of you would benefit from reading them.
So please scroll through and look at a few that interest you!  Please leave us a comment with your opinions!
-Elizabeth Wylie

 

Disability Update

  • Psychiatric group OKs changes to diagnostic manual
    The American Psychiatric Association’s board of trustees approved Saturday the fifth edition of its diagnostic manual for mental conditions. The guide includes Asperger’s syndrome and “pervasive developmental disorder, not otherwise specified” in the autism spectrum disorder category, and introduces a diagnosis of “disruptive mood dysregulation disorder” for children. Bloomberg (12/2), The Wall Street Journal (12/1)     
  • Disability hiring rule would be costly
    The Department of Labor’s proposed disability hiring rule will be costly for companies, writes Sara Cann. A study by the Associated General Contractors of America found that an average-sized construction firm would need to spend about $14,000 annually — for each project site — nearly 30 times the DOL’s estimate of $473. Fast Company magazine (11/2012)     

Other News

Assistive Technology

  • Website supports better library access for students with disabilities
    A new website offers librarians a self-paced online curriculum of videos, games and assessments to help them better meet the needs of students with disabilities. Project ENABLE (Expanding Nondiscriminatory Access by Librarians Everywhere) was developed by Ruth V. Small of Syracuse University’s School of Information Studies after she conducted a survey of school librarians and found that they gave themselves low scores in the area of disability services. School Library Journal (11/30)     
  • Scientists design robots for individuals with disabilities
    Two scientists, Kaijen Hsiao and Matei Ciocarlie, at Willow Garage in Menlo Park, Calif., are developing robots to help individuals with disabilities be more independent in their homes. Still in the design stage, Hsiao and Ciocarlie are working with an individual with quadriplegia, on designing a robot to do basic household tasks, such as getting food from the refrigerator. San Jose Mercury News (Calif.) (free registration) (12/1)     
  • As online videos rise, those hard of hearing seek captions
    Videos are increasingly prevalent on the Internet, leaving out many people who cannot hear or are hard of hearing. Advocates for people who are deaf are seeking regulations requiring websites such as YouTube and Netflix to provide content captions. Some sites already are making content more accessible with automated captioning software. “Access to information has been labeled as a civil right,” said James House, public relations director for Telecommunications for the Deaf and Hard of Hearing. The Washington Post (11/28)     
  • Other News

Transitions

UCP News

  • Progress on the Convention on the Rights of Persons with Disabilities
    United Cerebral Palsy and a broad coalition of disability organizations are working together to get the U.S. Senate to ratify the Convention on the Rights of Persons with Disabilities. This week, Senate Majority Leader Harry Reid called the treaty up for a vote! Learn more about the treaty and join in UCP’s efforts to finally ratify the CRPD.     

United Cerebral Palsy and #GivingTuesday
On Tuesday, Nov. 27, United Cerebral Palsy, the Huffington Post and other organizations observed the first annual #GivingTuesday, a day after the Black Friday and Cyber Monday shopping rushes, dedicated to raising support for philanthropic causes. UCP President Stephen Bennett sheds light on what this support looks like for people living with disabilities and the difference even a small donation can make. Read Stephen’s story and learn more about how to take part in #GivingTuesday.     

Resouces for Parents & Family

Happy Friday to all our UCP-OC blog enthusiasts!

This post stems from a conversation with a parent, who although is a part of our Parent Email Network was not aware of a number of very valuable resources for a parent with special needs. Below we will cover 3 resources,

  1. Brave Kids (A new resource that is especially for siblings, parents and the child with disabilities.)
  2. MyChildWithoutLimits.org (A website that focuses on early intervention for children ages 0-5.)
  3. CP Research News (A weekly newsletter highlighting new CP research)

Do you have a resource that other parents should be aware of? Share it by leaving a comment on this post or on our Facebook page! If you would like to join our Parent Email Network you can email Kathleen McFarlin at kmcfarlin@ucp-oc.org.
If you would like to receive the UCP-OC newsletter you can sign up on our website or email Elizabeth Wylie at ewylie@ucp-oc.org

1. Brave Kids: www.bravekids.org

Brave Kids, a new initiative of United Cerebral Palsy (UCP), serves children with disabilities and chronic/life-threatening illnesses by providing a support community, information and resources on numerous medical conditions like genetic diseases, autism, cancer, cerebral palsy, etc.

At the heart of the new Brave Kids website and community is a belief that people with disabilities and chronic/life-threatening illnesses should be able to live a life without limits. This site contains two primary components:

  1. An authoritative directory of information of interest to parents of children, ages 6-17,  with disabilities and/or chronic/life-threatening illness; including a special “Kids Zone” section written for children and young adults, ages 6-17;
  2. A social networking community that links parents and caregivers to others raising children with disabilities and/or a chronic/life-threatening illness.

You are also welcome to sign up for a monthly Brave Kids newsletter, at www.bravekids.org

2. My Child Without Limits: www.mychildwithoutlimits.org
This second website we have featured both on our blog and in our Spring/Summer ’12 Newsletter. It has been created by UCP to be an authoritative early intervention resource for families of young children ages 0-5 with developmental delays or disabilities, and professionals looking for a single, trusted, aggregate source of information that relates to their needs and interests. All medical information is reviewed by the My Child Without Limits Medical Advisory Board, a panel composed of doctors in the fields of developmental disability and delay.

Designed to be introduced as a web site, MyChildWithoutLimits.org will offer information in three basic areas:

  • Understand – this section will explain how children develop as they grow and provides parents with easy to understand milestones that they can use to help track their child’s development. This section also provides information about disabilities such as autism, cerebral palsy, Down syndrome, muscular dystrophy, and Rett syndrome.
  • Plan – this section offers guidance on where to go for early intervention services, treatments and therapies, assistive technologies, and working with experts;
  • Act– this section explores issues surrounding disability awareness, advocacy, and lifespan planning.

There is a community section where parents can communicate with each other, ask questions of professionals and service providers, and receive support through the critical period of initial diagnosis. 

The site includes a national Resource Locator where visitors can find local service providers, community organizations and government agencies. All this is intended to inform and support parents/caregivers at a time when too much information can be overwhelming and too little can be frustrating. 

Mychildwithoutlimits.org also has a newsletter that you can sign up for at www.mychildwithoutlimits.org. Also on this site, you can sign up to receive a Welcome Pack, which contains a sippy cup, bib, stuffed animals, and information from the site’s sponsors.

3. CP Research News
A free weekly bulletin of the latest published research in cerebral palsy, compiled and distributed by Cerebral Palsy Alliance. To subscribe to this free weekly bulletin, please complete the online form at www.cpresearch.org/subscribe/researchnews.

World CP Challenge

 

We would like to invite you to participate in the World CP Challenge – an event centered around physical fitness, encouraging personal well-being and teamwork, while supporting the local community.

www.worldcpchallenge.org/ucpoc

In teams of four, participants track their daily step count by wearing a pedometer, and record their results on the interactive Challenge website. The aim for each team is to reach the summit by the end of the four weeks. There are three different levels to choose from, depending on the fitness level of the team (and how ambitious they are).

The World CP Challenge is not just about walking your way to better health – participants can run, cycle, swim or even play lawn bowls to reach their daily step target. There are more than 40 activities you can convert to steps including activities suitable for people with a disability.

Play this short video below for more details on the campaign.

 

HOW IT WORKS

Registrations are open so please visit http://www.us.worldcpchallenge.org/ucpoc to sign up or simply respond to this email.

The World CP Challenge runs from 4 September to 2 October 2012. Registrations close 17 August 2012.

The cost is $25 per adult or $10 per child. Each participant will receive 2 pedometers, a fundraising booklet and gain access to the interactive website once registered. 

Please pass on this information to anyone you think may be interested including friends in large and small organizations, schools and community groups.

 

BENEFITS

    Improve your health and wellbeing

    Increase motivation

►    Be more productive

    Encourage teamwork

    Support the local community

You will be making a huge difference to the lives of children at United Cerebral Palsy of Orange County!

If you are interested or have questions please contact: Elizabeth Wylie, ewylie@ucp-oc.org 949.333.6412

 

Child of the Month

Here at UCP-OC we treat some incredible children with disabilities ranging from mild to severe. I hear stories all the time about the treatments that children are getting and milestones that are being reached because of UCP-OC. With all of these stories I thought we should have a place to showcase these children and their incredible feats.

Starting with the month of August we will have a Child of the Month so that our community at Life Without Limits Therapy Center at UCP-OC can see what other children are doing! With this page, family and friends can see what the child is achieving , understand more about how special each child is and the services that help get them to the place they are at.

This month we featured a child named Jacob. To read about the Jacob go to the Child of the Month page at the top of menu or follow this link. https://ucpoc.wordpress.com/child-of-the-month/

Won’t You Be My Neighbor?

Summer has officially arrived and things are changing here at UCP-OC! We have two new employees (one being me) and a desire to really get to know you! (our lovely families at UCP-OC)

So as we get to know you, its only fair you learn a little more about me! I wrote a little blurb a few months ago, but my name is Elizabeth and I was the intern here but now I am a full-time employee! I  graduated from Azusa Pacific University and I’m eager to learn about all of you. I love making pizzas from scratch (prosciutto and arugula is my personal favorite), I am a huge cupcake fan and love the fireworks at Disneyland! I am from good ol’ Huntington Beach, but big surprise I have an irrational fear of waves and therefore don’t surf. Last but not least, I LOVE taking pictures on my iPhone and sharing them. Here are just a couple pictures of the things I love (taken on my iPhone of course) :]

 

My hope is to give you information about things going on inside as well as outside UCP-OC, let you learn a little bit more about the families that come here through focusing on one child a month, as well as just creating conversations. I love the word community; a social group of any size whose members reside in a specific locality, share government, and often have a common cultural and historical heritage. I think we have the potential to create a great community through our passion for children with special needs. I really want this blog to be a place where information is given, but also where questions are answered!!

Here is how we create community!

  • Talk to us on Facebook! Give us ideas of what you want to hear from us, what you love at UCP-OC, something funny your child did that day or how we can serve you better! A good story makes my day so I would love to hear some!
  • Email me at ewylie@ucp-oc.org if you would like your child to be our child of the month! It could be a great way to give you family and friends the opportunity to learn what is going on in your child’s life.
  • Send us pictures of your child in action that we can share with everyone else!
  • Comment on a blog post! Maybe you have a personal experience or have tried something we are writing about. Let us know what you think!

Life is meant to be shared and that’s what I want to do! So nice to meet you and I can’t wait to hear from you! I think Mr. Rogers says it perfectly, “Won’t  you be my neighbor?”

Cheers,

Elizabeth