Early Intervention: A “Window of Opportunity” for Children

Brenda Sue Wright knows what it feels like to worry about her children. Of course all loving parents stress over their kids, but when your quadruplets are born 13 weeks early, the complications of premature birth for not just one, but FOUR children, and the risk of developmental delays leading to long-term disability can really take a toll on a parent. Below is a testimonial, written by Brenda Sue Wright, about her experience with her children and the helpful doctors at her hospital and the UCP-OC Early Intervention program.

"On May 4, 2007, I gave birth to quadruplet’s at 27 weeks gestation; Cassandra, Alexis, Lucas and Kenkaid. They were immediately placed in the Neonatal Intensive Care Unit and put on ventilators to assist with their breathing.

My children were born 13 weeks early! During those 13 weeks their lungs develop, they build body fat which helps their bodies regulate temperature, their brains create millions of neurons, and their muscles mature. My children did not get the 13 weeks that they needed for these important developments.

My children were born so early that their only chance for a normal life or life at all was early intervention. This Early Intervention would start with me as their mother then with the doctors and nurses in the Neonatal Intensive Care Unit and finally to the amazing staff at United Cerebral Palsy.

United Cerebral Palsy became involved in my children’s life when they were about 4 months old and had been home for approximately a month. At this point, I had lost Kenkaid to an infection, Cassandra had received heart surgery to help close her PDA vein, Lucas had a heart murmur, and Alexis had stopped breathing on several occasions. All were going to have a hard time catching up with normal children that had been born closer to their due date. All three showed signs of developmental and physical delays.

I wanted to make sure that I gave my children every opportunity possible to have some type of regular life, and UCP offered a chance to make a difference with their Early Intervention program.

At the time that I met the staff at UCP who would be working to help my children not only survive, but be the best they could be. I was fairly certain that my children were going to have serious delays. Pati Skinner and her co-workers at UCP started working with my children using infant stimulation, occupational, and physical therapy. Pati also instructed me on the progress that my children were making and the taught me what I could do to help it along.

Pati and UCP were there when my daughter Alexis stopped eating and walked me through the process to get help with her eating. As time went on there were moments when I had real concerns that Alexis might be autistic or have some other type of developmental delay. Cassandra and Lucas started crawling a couple of months before Alexis. She had taken so long to smile and laugh, I was sure we were never going to be able to get her to crawl let alone walk. Pati and UCP did… all of a sudden my Alexis started crawling; then the next day (truly next day) she was walking. To me, this is a miracle.

Today, Cassandra, Lucas and Alexis have caught up developmentally and physically. It is amazing to see them excel in different activities. Cassandra is athletic and motherly, Alexis has the amazing memory and thinks she is the boss, Lucas is an adventurous boy who loves the world; all are healthy and happy. Without the Early Intervention Program that they received from UCP… THIS WOULD NOT HAVE HAPPENED. I have three healthy, happy, wacky and crazy two-year-olds that are strong both mind and body; due to the love and support of Pati and the staff at UCP.

My hope for my children when my journey began with UCP was that they would be able to walk someday, perhaps even talk. Today, I hope that they go after their dreams whatever they may be; there is nothing holding them back.

Thank you Pati and UCP for helping my children be all they can be. I know that without your Early Intervention program I would be looking at three very different children."

Brenda’s experience is remarkable, but she is certainly not the only one to have found her children in need of Early Intervention. A window of opportunity exists during the early years where these children, if properly cared for through programs like this, have the greatest hope of reaching their full potential. UCP-OC’s Early Intervention program has helped hundreds of children reach developmental milestones over the years, and often these children don’t require any further specialized education once they leave the program. In a recent assessment, a staggering 94% of children in UCP-OC’s Early Intervention program demonstrated clear progress in 3 out of 5 developmental areas. This is great news for the parents, great news for the children, and it eases the burden on social programs designed to help people in need of specialized care for years to come.

Unfortunately, 56% of the children in UCP-OC’s Early Intervention will no longer qualify for these services as of the beginning of October. California’s recent budget crisis has forced the state to change eligibility requirements for infants and toddlers receiving Early Intervention, leaving dozens of families without a way to address their children’s developmental delays. This is truly unfortunate, as it increases the possibility that these children may require longer-term assistance, weighing heavily not only on the State’s budget in future years, but on the well-being of the families that care for them and the children themselves.

How You Can Help
UCP-OC has the staff, the expertise and the will to help these kids, but as of October 1 we will find ourselves short on funding. Please consider making a donation so that we may continue providing Early Intervention to those that it would help the most. Click here to visit our donation page and help a child with developmental delays reach their milestones and experience a life without limits!

Orange County Bike Camp - Teen Volunteers Give the Gift of Accomplishment to Children with Disabilities

By Patti Wahlberg

After volunteering in the special needs classroom at her middle school in the eighth grade, my daughter, Robyn Couch, came to me and asked if she could become a certified Special Sitter with United Cerebral Palsy of Orange County. Now in her second year of high school, this certification has given her many rewarding hours with special needs children at organized events, or as a babysitter in their homes, and she has a true passion for these children.

When she received an invitation from UCP-OC this past July to volunteer for the 2009 Orange County Bike Camp in August, a joint effort by United Cerebral Palsy and the Down Syndrome Association, she jumped at the chance. The camp’s purpose is to give children and young adults with Down syndrome, autism, cerebral palsy and a variety of other developmental disabilities, a week of lessons in how to ride a bike on their own, without training wheels. Held on the beautiful campus of Soka University in Aliso Viejo, the camp hosted 40 campers and was a huge success.

Robyn volunteered to work two sessions back-to-back each morning for the week, helping with registration and keeping notes on the campers and their progress. Other volunteers worked one-on-one with the campers, first on bikes with training wheels, and then running alongside their bikes, helping them to balance and ride independently. I stayed to observe the last session of the camp, and was impressed and moved by the joy and sense of accomplishment of the campers, and the patience, kindness and generosity of the teen volunteers. Robyn made friends with two of the campers, who exchanged Facebook contact information with her so that they could keep in touch. And not only do the volunteers have the gratification of helping those in need and the chance to make new friends, but the bonus of volunteering also earns them community service points, which looks great on their college resumes!

In this world of internet, cell phones, television and video game addiction among many teens in our society, there is almost nothing more heart-warming than to see young people go out there and donate time out of their precious summer vacations, to give joy and a sense of accomplishment to children with special needs, by teaching them a simple, enjoyable activity that most of us take completely for granted—how to ride a bike.

Contributed by Patti Wahlberg

Newsletter Story: UCP therapy services offer new hope

Michael is an adorable, smiling, 29-month-old child with Down syndrome. He has been receiving therapy since very early on, though not always with the best success, and his parents became concerned. Michael seemed as though he wasn't enjoying his therapy time. They saw only minimal progress and discussed the possibility of trying out new therapy services, even for a week, just to see some improvement. Like so many other parents, they didn't want to "waste time" if the services weren't going to meet Michael's needs. Michael came to his first appointment at UCP-OC where he met with Susan, his physical therapist and Myra, his occupational therapist.

When Michael first started his therapy at UCP-OC, he moved himself around by crawling on his stomach and didn't use his hands to explore toys very much. He showed little interest in his environment and wouldn't focus for very long on any toy or activity. In the four months since then, he has made tremendous progress and blossomed in many ways. He now scrambles along on his hands and knees at the speed of light to investigate everyone and everything. He can easily pull himself to a standing position and has just developed the ability to stand for a few seconds by himself. He is almost able to stand up from the floor completely by himself without holding onto anything. He walks with two hands held, is beginning to walk well with one hand held, and has even taken his first step without any support!

Michael has matured into a toddler who now tries over and over again to accomplish things as independently as he can. According to his parents, "he is climbing up onto the sofa, getting into cupboards to investigate all of the interesting things hidden inside, even creeping in and out of them when he can!" He is excited and interested in more complex toys than he was previously and is more perceptive of new things and new people in his environment. And perhaps most importantly, he now enjoys coming to therapy. As soon as he arrives, he knows it's time to play!

Michael has made a lot of progress in a relatively short period of time. Under the right circumstances any child with a disability can reach their full potential, but it takes loving, devoted parents, the right expertise and the generous support of friends like you. It is because of your gifts that UCP-OC is able to provide the toys, the therapy equipment, and the skilled staff to help children like Michael experience life without limits!

Taken from the Summer Newsletter. This article has been edited for length, to read the full story, go to: http://www.ucp-oc.org/UCP/Newsletter.php. Thank you to Michael's parents for allowing us to publish his story.

The Legacy of Eunice Kennedy Shriver

We lost an amazing person yesterday. Eunice Kennedy Shriver, founder of the Special Olympics, passed away at the age of 88. As a passionate advocate for people with intellectual disabilities, Eunice personified the love and dedication to her cause that all of us, inside or outside of the non-profit world, strive for. Our motto, "life without limits for people with disabilities," and our mission of inclusion could not be better exemplified than by the Special Olympics, where people with autism, cerebral palsy, Down syndrome and myriad other conditions can participate in sports activities that allow them to realize their full potential.

Her advocacy for the intellectually disabled fomented into a vehicle for international acceptance and anti-discrimination laws. Russia, who 30 years ago claimed it did not even have citizens with intellectual disabilities, sent almost 200 participants to the Shanghai Special Olympics.¹ In Egypt Special Olympic hopefuls, once shunned from society, openly practice showshoeing on sand dunes in front of the Pyramids.² We owe a great deal to the spirit of inclusion and acceptance that Mrs. Shriver's efforts have garnered in her more than 50 years of service to the global community. She is a true champion and will be missed by millions.

Contributed by Chris Varesi, UCP-OC
¹ http://www.eunicekennedyshriver.org/bios/si/page/2
² Ibid.

Welcome to the UCP-OC Blog!

For over half a century, United Cerebral Palsy of Orange County has earned a reputation for providing a range of vital services that improve individual well-being, promote inclusion into society on all levels and support families who have a child with developmental disabilities. It is our privilege to meet these needs for the people of our community. We are looking forward to introducing you to our programs, our staff, which is dedicated to these families, and to providing information that will update knowledge about current research, and new programs and services being offered by UCP of Orange County. We will be sharing with you our visions for the children and the families we serve and their success stories, allowing you to meet the wonderful children and families with whom we work.

Contributed by Susan Cremeans, UCP-OC