UCP SmartBrief

Disability Update

Virginia Tech clinic seeks new treatments for cerebral palsy
The Virginia Tech Carilion Research Institute has created the Neuromotor Research Clinic to find new treatments for cerebral palsy. A $4.2 million NIH grant will be used for a program that tracks 135 children with CP who will get high-intensity therapy for hemiparesis. The Roanoke Times (Va.) (8/15)
 
Cerebral palsy a risk factor for severe flu-related complications in children
Medical records gathered from 79 hospitals across 12 countries revealed six risk factors for identifying children at greater risk of suffering severe complications due to influenza. The risk factors included dehydration, breathing problems, need for oxygen therapy, heart rate above the normal age-based range, and history of conditions such as chronic lung disease, cerebral palsy and developmental delay. The findings were published in the British Medical Journal. The New Zealand Herald (8/15)
Other News

Assistive Technologies

How iPads make education more accessible to students with disabilities
The range of mobile applications available on the iPad offers many options for students with various disabilities, adaptive technology expert Therese Willkomm said during a four-day iPad boot camp in Concord, N.H. This article highlights some of the apps discussed at the conference, such as TextGrabber, which reads aloud pictures taken of text. Concord Monitor (N.H.) (8/15)
 
Companies ask FCC to exempt e-readers from accessibility rules
Companies such as Amazon, Sony and Kobo asked the Federal Communications Commission to exempt their e-readers from requirements that they be accessible to people with disabilities. The companies said e-readers are not designed or marketed for advanced communications services, but disability advocates disagreed and pointed out that some of the devices are being marketed for school use. Disability Scoop (8/14)

 

Transitions

Some Va. students with disabilities receive incorrect scorecards
Virginia school officials will meet with representatives from education and testing company Pearson to discuss the more than 4,000 incorrect scorecards that were given to students who took the Virginia Alternative Assessment Program. Officials are saying the problem arose when students’ scores were converted into proficiency levels — fail, pass/proficient or pass/advanced. The Washington Post (tiered subscription model) (8/13)
 
Ohio bakery helps workers learn business operation skills
Crumbles Bakery in Poland, Ohio, hired workers with disabilities, providing employment and teaching them how to run a business. Workers participate in all aspects of the business, from packaging and baking to cleaning. WFMJ-TV (Youngstown, Ohio) (8/18)
 
Other News

UCP News

World CP Challenge starts in one month!
Have you registered your team for the World CP Challenge yet? This four-week fitness activity helps to support people with cerebral palsy and other disabilities, and starts Sept. 4 and ends on World Cerebral Palsy Day, Oct. 2. Teams of four challenge themselves to take 10,000 steps a day — and nearly any activity, from walking to biking to yoga, can be converted into steps. Join today to get active and help support a great cause!Help Life Labs make the 2013 Design-athon a success!
 
UCP’s Life Labs is partnering with Enabled by Design to hold the 2013 Enabled by Design-athon, a two-day event dedicated to finding innovative solutions to problems faced by people with disabilities. Through presentations, speeches and active designing, the Design-athon is a great way to jumpstart ideas that make a difference in the lives of people with disabilities. Check out the Life Labs blog to learn more about the Design-athon and how to get involved.
 
Some people grumble because roses have thorns; I am thankful that the thorns have roses.”
— Jean-Baptiste Alphonse Karr,
French critic
Advertisements

Life’s a Journey with CP and Me

Hi Everyone at UCP-OC!katyfd-225x300
Katy here—I just returned from UCP-OC’s bike camp at Soka University in Aliso Viejo (where I am going into my 3rd year for my BA!) For those of you who are unfamiliar with the week-long camp, it is put on by iCanShine, a national organization that provides quality learning opportunities in recreational activities for individuals with disabilities who are determined to learn how to ride a bicycle. The camp is run by UCP-OC and Down Syndrome Association of Orange County and both organizations are very grateful for the support of the Pujols Family Foundation who sponsored the camp.
With the help of some amazing volunteers, the kids spend five days on adaptive bikes in the hope that they will be able to ride a two-wheel bike without any assistance! Having gone on the final day of camp, it was so awesome for me to witness these kids getting out there on two-wheeled bikes for one final ride with confidence with smiles on their faces! I was very proud of these kids with knowing how hard it is to put in the physical effort it takes to succeed like they have.

This experience—although I was not there to witness their entire progress—made me reflect upon my own past when I learned how to ride a bicycle. Having CP, it may seem unlikely that bike riding is actually my favorite form of exercise, but it is true! I did not learn how to ride a bike until I was nearly nine years old (four years later than my twin sis) but I never would have thought that it would become such a fun part of my active lifestyle! The day I learned how to ride a bike is a day I will never forget; my parents woke me up that morning and told me this was the day I was going to ride a two-wheel bicycle. Before then, I just had training wheels and started to feel like I was never going to be rid of them, how embarrasing! My whole family and I took a trip to the boardwalk in Huntington Beach, my hometown, and my dad placed my bike on the side nearest to the sand. He told me to get on my bike, and that he would help me start, but by the end of the day he made me promise that I was going to ride without any help! Looking back, my whole family seemed pretty fearless about my CP—and I think that was a great thing for me at the time! It forced me to continually challenge myself, because everyone around me was always doing the things I wanted to do, but just took longer to learn and adapt to because of my CP. After several scary spills and nose dives into the sand, I became more and more frustrated with my lack of balance, but it motivated me to keep going and I eventually grew more comfortable with the fluidity of my legs and found my rhythm! I was exhausted and probably a little shaken up from the day, but as you may know already, CP comes with its fair shares of scraped knees and hands just from everyday life! Now, biking is the best thing for me; it’s low impact and great cardio! The only adaption I make is adding a foot strap on the left pedal, so my foot won’t slide off in the front. I’ve been riding my beach cruiser around ever since that day and I find it so freeing because I can go much faster than if I was running, and no one would ever know I have a physical disability when I am on a bike!
Looking back, learning how to ride a bike was just the next obstacle that I was determined to overcome at the time and I know myself well enough to admit that I am the type of person to never back down from a challenge, no matter how difficult my CP makes it for me!
That is probably the type of attitude that I’ve carried with me over the years and got me through my years of AYSO soccer, over Yosemite Falls, and into my active lifestyle where I am today. I have had to slow down quite a bit because my CP does make running and rigorous activity difficult; so I just continually adapt myself to what my body can manage on a daily basis! It has taught me to value my body, and has improved my capacity to understand my limitations. I know now that however frustrating they may be—we all have our own limitations whether we set them for ourselves or not. Some people I’ve encountered over the years call me courageous or inspirational, but I prefer to think of myself as a resilient human being… we all have our own struggles to endure—we just have to learn how to better deal with them when we can’t always overcome them, and that’s what my CP has taught me.

This slideshow requires JavaScript.

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)

family photo 1