a week of celebrations

This week as been a week of celebrations at United Cerebral Palsy of Orange County! We surprised and celebrated two incredible and impactful women at our organization.

Ana Reyes: Early Intervention Specialist and fearless leader of the “Let’s Grow” class at the Life Without Limits Therapy Center at UCP-OC. Ana has been with UCP-OC for 25 years! This job is far greater than just a job for all of us, but Ana has made it her life. Her dedication and loyalty to our families is unrivaled and we are very grateful for her committment to UCP-OC. After doing the calculation we discovered she has touched over 2,500 families and allowed these children live a Life Without Limits!

Thank you Ana for all you give to UCP-OC, we are so glad you are doing what you love, and that it doesn’t seem like 25 years at all!

Next we celebrated Kathleen McFarlin for her 20 years of service to UCP-OC families through her role of overseeing Respite, Childcare Inclusion, Recreation Classes, Parenting Classes, Support Groups, and the infamous Parent E-mail Network…just to name a few. There is no way to fathom the many children & families that Kathleen has impacted, informed and changed their lives. Kathleen is constantly encouraging and her laughter is heard throughout the office.

Thank you Kathleen for your dedication and for being such an important part of our daily life at UCP-OC.

Kathleen’s team wrote a heartwarming poem for her.
Kathleen McFarlin and her unstoppable programs team.

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

 

Success Story | Helping the Behaviorally Challenging Child

 

We recently received a few success stories from one of our Parenting Classes, Helping the Behaviorally Challenging Child. This is a story of encouragement and we hope it will ecourage you!

I recently attended Debra Ann’s refresher class after originally attending the Helping the Behaviorally Challenging Child Class Series 2 1/2 years ago.Our son Mark who is now 16 years old and has an autism diagnosis has come a long way over the past three years.   We were very challenged, to say the least, during Mark’s middle school years with explosive outbursts both at home and school.  At school, his academic demands were much too great, he was depressed by the lack of social opportunities, and he was unable to understand or articulate his many daily frustrations.  This was a very stressful time for our entire family living with an intellectually challenged, inflexible teen with very low frustration tolerance. We were desperate parents who needed help.  We tried every medication prescribed on the market for aggressive behavior. At home, we followed a tight schedule using the conventional behavior management approach of positive reinforcement using reward systems and extinction and redirection for negative behavior, mostly met with little success.    Ultimately, the greatest gains we have made come fromunderstandingwhy he is upset, showing empathy, and using the Plan B Parenting Method from “Treating Explosive Kids: The Collaborative Problem-Solving Approach” by Ross W. Greene and J. Stuart Ablon introduced to us from the Helping the Behaviorally Challenging Child class series taught by Debra Ann Afarian.

Mark is now a junior in high school, and he is excelling at school. He is appropriately placed in his special ed classes with fewer academic demands being placed on him.  He loves the social interaction he has with his typical peers in his mainstream electives.  And his happiness at school carries over at home.  Although we still face some negative behaviors that come with the territory, we have learned how to be more empathetic to Mark’s deficit skills, in particular, his low frustration tolerance.  Mark is a huge Anaheim Angels fan, and the majority of Mark’s frustrations now stem from his disappointment over the Angels’ losses.  In the conventional behavior management approach, we were taught to ignore Mark’s negative behavior, and ultimately deny Mark the ability to watch the games if his behavior escalated.  But since the viewing of the games is his passion, we have learned how to implement the Plan B Parenting Method so he can watch the games.  While some losses hurt more than others, we greatly appreciate the more peaceful home we now live in.

-Kaysie

Mark was recently voted as Homecoming Prince as his High School. This class has assisted in his assilmilation into high school and has allowed the fostering of friendships! His homecoming story is featured in the OC Register, you can read it by clicking here: http://www.ocregister.com/articles/mark-322801-kylie-homecoming.html

For more information regarding Helping the Behaviorally Challenging Child Class please go to our website or contact Debra Ann Afarian at dafarian@ucp-oc.org.

Child of the Month | July 2012

Savi

Savi loves to pop bubbles. With each bubble she pops comes a round of applause from the gleeful Savi.

Savi Costa is a 22 month-old little girl with an infectious smile, loving spirit and has a fascination with the beads Miss Beth puts in front of her to grab. She loves to read. While her mother is reading to her, she pretends she is reading out loud right along with mom.

Savi was born with Down syndrome, and has received Early Intervention services from UCP-OC since she was 2 months old. She receives physical, occupational and speech therapy at UCP-OC and she loves her time with Beth, Christine and Ria. Speech therapy works to expand her vocabulary and develop expressive language to assist her in communicating. For occupational therapy, Ria works with her fine motor skills and eating. Recently, she began using a sippy cup on her own!

In her current physical therapy sessions she works on putting her weight on her legs. In February 2012, she was fitted with orthotics through United Way’s funding.  Before receiving these orthotics, she could not bear weight on her feet; now, when wearing her orthotics, she stands nicely with hands held and has begun taking 3-5 steps forward with minimal assistance.  The orthotics also decrease knee hyperextension. 

 Her parents are extremely grateful for her services and the orthotics, as they believe this intervention has made such a significant improvement in her life. One of UCP-OC’s next goal for Savi is to have her stand with letting go to whatever is holding her up. We know she can do it!

  

If you would like to make a gift to support the services that are helping Savi and her family please click here or contact Elizabeth Wylie at ewylie@ucp-oc.org for more information.