Hot Off the Press…a second time.

Last month we posted the a few interesting articles from the UCP SmartBrief. Due to the excited responses we received we will be doing a post like this every month! Hope you enjoy the following articles about individuals living a Life Without Limits and learing about the new technology available to children with special needs. This is a compilation of the top 10 stories and I thought many of you would benefit from reading them. Also, last post we highlighted an article about a young girl who was denied a kidney transplant because of her intellectual disability and this month we have an update for you!
 
So please scroll through and look at a few that interest you!  Please leave us a comment with your opinions!
-Elizabeth Wylie

UPDATE: Hospital sorry for handling girl with disability 

A Philadelphia hospital is apologizing for how it handled the case of a 3-year-old who was reportedly denied a transplant because she has an intellectual disability. The Children’s Hospital of Philadelphia issued a statement Wednesday along with Joe and Chrissy Rivera, a New Jersey couple who went public last month saying they were told that their daughter could not receive a life-saving kidney transplant because of her disability.  Disability Scoop (2/16)

Study finds many adults with disabilities lack daily activities

Many adults with intellectual and developmental disabilities lack a schedule of daily activities, according to a new study published in the American Journal on Intellectual and Developmental Disabilities. Researchers from Vanderbilt University found that those without routine activities often were those with more emotional, behavioral and health difficulties, and often were underserved by the community or had parents who were unable to provide adequate care. Disability Scoop (2/15)

Researchers: Behavioral-intervention results are inconclusive

Researchers with What Works Clearinghouse said results were inconclusive in a review of 166 studies of an intervention program sometimes used to help reduce aggression and teach social skills to students with disabilities. The Incredible Years program, which has won numerous awards and is used in 15 countries, comprises training programs for parents, educators and children. It is used in small-group settings to address difficult behavior or in larger groups as a preventive intervention. Education Week/On Special Education Blog (2/16)

 Researchers tie autism spectrum disorders to impaired motor skills

PhysiciansBriefing.com/HealthDay News (2/16) 

Is technology causing an increase in Braille illiteracy?

More individuals who cannot see or who have visual impairments are using text-to-speech software on smartphones, and other assistive technology to complete tasks, instead of Braille. Experts say the trend is leading to a troubling increase in Braille illiteracy, with just 10% of those who cannot see now estimated to be proficient in Braille, a significant decrease since the early 1900s. National Public Radio/All Tech Considered blog (2/13) 

Technology is used to enhance lessons for students with autism

Interactive whiteboards and iPad tablet computers are being used to help improve communication and other skills among some students with autism in Ontario. Teacher David Balfour said the technology helps make repetition — a component of instruction for students with autism — more interesting and engaging, and research is under way to determine whether the technology helps improve learning, as well. The Globe and Mail (Toronto) (2/15)

 Man with cerebral palsy creates online radio station about living with disabilities

SouthCoastToday.com (New Bedford, Mass.) (2/16)

 Computer programs may help screen for psychiatric problems in teens

Reuters (2/15)

Broadway musicals to stage more autism-friendly performances

The Washington Times/The Associated Press (2/13)

 Former “Top Chef” contestant participates in UCPlay Project

 Part of UCP of Los Angeles, Ventura and Santa Barbara counties, UCPlay Project and a former Bravo “Top Chef” contestant visited a California high school for a student culinary challenge. The eight-week program was developed to help students with disabilities gain communication and social skills for the next transitional phase of their lives. UCPlay Project

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Angel

 A member of our UCP-OC Staff wanted to share this story with our families. She has been impacted by Angel and his family’s story. We hope you enjoy this story as much as we do!

Angel is a sweet, lovable and intelligent 24-month-old who UCP-OC has served through our In-Home Infant Stimulation program since July, 2011. Angel was born four months premature which left him struggling with several developmental delays. Tragically, Angel has trouble digesting food which is fed alternately through his mouth and through a G-tube.

Angel’s family has been faced with many challenges. His mom, now a single mother with 5 children, must juggle Angel’s many medical appointments as well as speech therapy for his 4-year old sibling. Finding a stable job to work around all these parenting demands has become nearly impossible for her. As a result, many of the basic bills for this family of 6 remain unpaid, including rent and utilities for their apartment.

As the Child Development Specialist working with this family, I gradually learned how dire their situation was and that they were on the verge of being evicted from their apartment.  To keep this family in their home, I realized that we had no time to lose and turned to UCP-OC’s Director of Programs for emergency assistance.  We contacted a generous resource which effectively, quickly and with a great sense of humanity helped Angel and his family with the amount due for the rent and utilities. Not all problems have been resolved for this family, but prompt action by UCP and our benefactors prevented Angel and his family from being on the street. “Life Without Limits” is something we practice every day in our work as an organization committed to the welfare of children with special needs and their families. UCP-OC’s impact in our communities through its various programs makes a big difference, and it’s what drives us to continue doing the work we do.

– Moraima

The Jogger

 A few weeks ago, one of our staff members received this heart-warming letter from a family that benefited from our Swap Meet network. A mother was in search for an adult jogger for her daughter with CP, and through our Swap Meet network, a staff member was able to find exactly what she needed. Swap Meet is a resource for our families with used equipment to donate or sell with other families who are looking for discounted equipment for children with special needs.  

For more information on Swap Meet please follow this link:    http://www.ucp-oc.org/UCP/Swap_Meet.php      

Dear Janet,

I guess it all started quite a few months ago when I started looking for an adult size jogger. My middle daughter, Melissa, has CP and uses a wheelchair full-time.  Her older sister, Carrie was diagnosed October 2010 with a very rare and dangerous bone marrow disease called Hemophagocytic Lymphohistiocytosis or HLH.  She has been very sick for so long and our family has almost lost her many times.  Carrie used to be a “runner” before she became ill and so to try to support her and bring awareness to her disease many of her friends all over the country have run races in her honor.  She lives in Florida with her husband who is in the Air Force and their three young children.  Currently she needs a bone marrow transplant but they can’t find a match so she is scheduled to go to Texas in February to have a cord blood transplant to try to buy her time until a match hopefully is found. She will be in the hospital from 3 to 6 months away from her family.  Because of all of this, my son David has been training to run a race down in San Diego where he is finishing medical school.  He wanted to be able to include his sister Melissa, but wasn’t sure how to accomplish this.  First he thought he could just push Melissa in her wheelchair as he ran, but we all realized that was very unsteady and dangerous.  Then I remembered that UCP-OC had a “swap meet” site so I decided to try to find an adult size jogger that he could use.  I called and left my request quite a long time ago and honestly had given up on the idea. Realizing how expensive a new one would be I was trying to come up with an alternative.  


Last week I received the nicest call from Janet Winter asking if I was still looking for the jogger.  She had someone who was ready to donate one. I was so excited and Janet set the steps in motion for me to be contacted by the donator.  This lovely lady named Anne called me the next day and we set up the time and location for her to give me the jogger.  We met in her work parking lot and she delivered it to me.  She also met Melissa and we all talked for a long time.  I don’t think she realizes what it means to our family, we feel very helpless sometimes trying to help our sick daughter.  Because of her generosity my son David will be able to push Melissa in many races to raise awareness for HLH and to honor their beloved sister.

I can’t thank Anne and her family enough and also UCP-OC for making it all possible.  Our family looks forward to watching David push Melissa in many races in the future thanks to all of your help.

Sincerely,

DeeAnne

DealGooder

Here’s a great new way to help support the families at UCP-OC!

DealGooder.com is a website that is devoted to great savings and supporting local charities! They host amazing deals on anything from local concerts and salons to discounts at the best restaurants in town! Every week they sponsor a different charity and this week its UCP-OC’s turn! From February 6th through the 12th, DealGooder.com is donating 50% of all Daily Deal proceeds go directly to UCP-OC!

Come check out today’s Daily Deal for UCP-OC! www.dealgooder.com/ref/unitedcerebralpalsyOC

For every person that subscribes to their email list, DealGooder will also donate $2 to UCP-OC!

So hurry up and Turn Great Deals Into Good Deals!

Child of the Month: February 2012

February 2012: Damian & Victoria

Taking a look at the picture to your left I am sure you have noticed that this month is not just one child of the month. No, this month is double the fun with Damian and Victoria, the children of the month for February!  “Victoria and Damian were brought into this world much too early, much too small and very sick. They were born at only 27 weeks weighing only 2lbs each.”  As parents, Miriam and David had to watch as their children fought for their life. Between the two children, everything that could happen to a newborn did, and it was four months before the parents could bring both healthy children home. 

The months and years to come brought new obstacles the twins had to overcome, but each obstacle was met with the help of UCP-OC. Around one years-old the twins were showing signs of delayed development and a family’s PT friend referred the family to UCP-OC. She simply said, “get connected and get over there. You are looking for the best therapy and you will find it there.”

Both children came to UCP-OC for PT with Moira and Melanie, soon they began some OT with Myra, Infant Stimulation with Ria and most recently Speech with Patty and Christine. With this dream team, the twins worked on starting to crawl, fine and gross motor skills and speaking. Soon they started crawling and now they are cruising around the lobby walking greeting everyone they can.

Victoria and Damian love it at UCP-OC, and look forward to their sessions with their friends at UCP-OC.

Damian and Victoria are two peas in a pod, I dare to say they are opposites that keep each other going. Damian is cautious and calculated. He analyzes each situation before making a move. Although he may be the rule follower, he is also the snuggler of the family and will shower love on those around him. Victoria is the dare-devil. She will climb anything, and there is no stopping her. She is not what you would call a “lap child” but rather she is more cautious to show affection…unless you are a member of UCP-OC, then she will love on you!

The Daboub family is the first family walking in the OC Marathon on Team UCP-OC Families for their two children and to raise money for UCP-OC.

“Now at almost two years old our babies are doing everything two years should be.  Thanks to the help of UCP of Orange County our babies have reached all of the milestones that we were once told may never happen.

On May 6th, 2012, we will be walking the 5K in the OC Marathon…. Not only in celebration of our miracle babies, but to help raise much needed awareness and funds for UCP-OC.  They need our help in order to continue offering these great services to so many children in need in our community.  So join Team UCP-OC Families and let’s help this wonderful place so many kids depend on.”

-Miriam & David