From an Orphanage in Africa to a Life Without Limits

For National Adoption Awareness Month, UCP would like to introduce you to the McGee family, including Israel, a young boy with a cerebral palsy who was adopted from Ethiopia. Rebekkah McGee now writes a blog about their family and their adoption story, which you can follow at http://yestoadoption.blogspot.com/.

 

WhIsraelen Rebekah and Will McGee traveled to Ethiopia to meet their soon-to-be-adopted son Israel over two years ago, they never dreamed they were actually embarking on a completely different type of journey. Adopting internationally, they understood that there may be difficulties since Israel was coming from an institution, but they didn’t know exactly what to expect.

“We were young, we had only been married a year (when we decided to adopt). But we knew we wanted to make adoption a priority. It was important to us,” said Rebekah McGee.

Even at four months old, when they met Israel for the first time in Africa, they could tell that he had some developmental delays, but having never been parents before, the McGee’s didn’t know what that meant for the future.Israel2

In May of 2011, when Israel was seven months old, Rebekah and Will brought him home to the U.S. By the time he was nine months old and not yet rolling over, a church friend recommended the family to United Cerebral Palsy of East Central Alabama for early intervention services.

“We had no idea as new parents,” Rebekah McGee said about Israel’s disability. “But I’ve had 2 ½ years of supportive help with UCP. The team there has made me feel more competent that I had the skills I needed as a mother.”

“When they say it takes a village to raise a child, well, UCP is part of my village,” she said. “They have cried with me on the hard days. Anytime we have needed something, they have helped. They are so much more than just the services they offer.”

The McGees have taken advantages of all of those services from early intervention therapy to the daycare Israel is now enrolled in. And, earlier this year, Israel was featured in UCP of East Central Alabama’s annual fundraising telethon. The McGees recently got more details on how parts of Israel’s brain had been affected and a new diagnosis. Although the UCP team had not worked with a child with that specific diagnosis and Israel was only two months away from aging out of early intervention services, the staff jumped on researching the diagnosis to figure out how to best care for him.

“The reality of having a special needs child is that you see a lot of doctors and specialists,” said Will. “We have had to go through so many specialists to find someone who connects with Israel. It’s so refreshing that at UCP we don’t have to do that. Everyone connects. He has a relationship with everyone there.”

Israel now has a one-year-old sister, Edith, who does not have a disability and the family is thriving. Israel has come a long way thanks to the therapy and services he received. He is not quite talking yet, but walks with some assistance. There were difficult times, but Rebekah is glad UCP set the bar high for him to reach.

“Just the other day,” recalls Rebekah, “I was talking to his UCP service coordinator and she said to me ‘We have never put limits on Israel…and we never will.’”

 

family picture Oct 2014

What Does it Take to Live a Life Without Limits?

Here’s the personal story of Ula, who has challenges due to cerebral palsy as well as the normal ups and downs common to many people with and without disabilities. Her secret to living a life without limits? Taking care of herself and pursuing the things that make her happy, rather than focusing on other’s expectations. 

 

My name is Ula, I’m 34 years old and I have mild cerebral palsyUla Thepsouvanh

My mother was pregnant with me when she came to Canada from Laos. I was born with the umbilical cord wrapped around my neck and was pronounced dead for 5 minutes.

My parents, whom I love very much, kind of wrote me off. They thought that they would be stuck caring for me until one of us dies. They were fresh off the boat from Asia when my mother gave birth to me. So they had a lot on their plate just adjusting to life in Canada with my grandparents and my brother.

I have tremors all though my body and speech impediment for which I took speech and physical therapy. When I was a teenager I felt that I was “too cool for school” and quit therapy because it was boring. It was one of my regrets in life. I didn’t see the value of therapy until it was too late.

When I was 17 years old I wanted my driver’s license. It took me almost a year to convince my parents to teach me to drive and another few years before I decided to take my test. I failed my first time but passed the second time. I remember coming home and telling my parents I got my driver license, my parents and I started to cry. They were tears of joy and shock. It was one of my proudest moments. I did not think I was capable of getting my driver’s license because of my uncontrollable tremors. Surprisingly my tremors did not play a part in the way I drove.

I attended college for three years studying human services and Fetal Alcohol Spectrum Disorder (FASD) support work. I received assistance from an employment service for people with disabilities, which found me a job at the YMCA starting in a preschool summer day camp. I have been there for eleven years now working at a youth shelter as a counselor.

I was 26 when I met William, the love of my life, and we married three years later. We have travelled the world together. William is musician and a professional artist and no, he does not have a disability. When we were dating we bought a karaoke machine, which we used almost every day for six months. One day William told me: “Babe you’re a good singer and have a beautiful voice. All I can think is “okay no I don’t, did you forget that I have CP and a speech impediment?” After we got married we decided to take singing lessons together. Our voice coach, Cesar Aguilar, trained us in classical and in opera.Ula Photo 2

“Working with Ula was a wonderful rewarding experience. The lessons we had with her and her husband Will were always filled not only with singing but also with laughter and joy,” says my voice coach. “Ula always showed up to lessons with a great attitude and ready to have fun and learn new songs. Although sometimes overwhelmed by some of the songs or vocal and breathing exercises I gave her she always put her best foot forward and tried everything I asked. She was always aware of her speech impediment although it never interfered with her ability to sing.”

I asked my musician husband to teach me guitar and he suggested trying the ukulele because it’s small and only has four strings. I have been playing for four years now. I have always liked music and knew I had an aptitude for it. Someday in the near future I could see myself preforming live. I want to start a band with other women with disabilities.

For me, having CP means I am committed to self-care everyday. My life is structure; I wake up, do yoga, I go to the gym, play ukulele, and visit my grandparents. I do this everyday before going to work in the evening. I have to take care of myself physically and mentally. Taking care of myself gives me confidence and that confidence curbs my tremors.

I think there is always going to be a part of me that is bitter and jealous toward people that don’t have disability. I do have dark days. I think I don’t mind having cp. I think it helped shape who I am today; I like who I am. However I sometimes wish that people would just keep their thoughts and question to themselves. I don’t know how many times I get of accused of being drunk when I’m in public. There was one time I went to a grocery store. Three cashiers followed me out and tried to block me from getting in the car because they though I was intoxicated and threatened to call the police. I had to explain to them that I have disability. I was humiliated and angry I spent hours and hours crying. I get weird looks and I hear whispers – “why does she talk that way.”

But, it is hard to picture my life without CP. What kind of career path would I’ve had taken? What kind of a relationship would I have with my friends and family? Would I be in the popular crowd like my siblings? Cerebral palsy or not, everybody has limitations. These limitations are determined by the body and mind and not by other people. It’s up to me and you to test those limitations to the best of our abilities.

Brothers Looking to Help a Friend Found Florida 5K Run/Walk

K Twins and Friend

Konstantinov twins with friends

In 6th grade twin brothers Adrian and Martin Konstantinov met Ben Juliano, a classmate with cerebral palsy. After hanging out for a couple of years and becoming good friends, the brothers asked Ben’s father if there was anything they might be able to participate in to benefit CP research or treatment to help people like their friend Ben. After a little digging by the boys and both families, they could not find anything local that would accomplish their goal. It only took a little bit of thought to hit on the idea of starting their own 5K run for CP.

They connected with United Cerebral Palsy of Central Florida and the Cerebral Palsy International Research Foundation, which supported their idea and enthusiasm from the start. The first race of what would become an annual event raised $7,500, with the boys personally organizing and securing sponsors. The boys learned how to make presentations to potential community sponsors and worked with UCP and CPIRF on how to determine how the money raised would be spent – an important key for gaining sponsor cooperation. They very quickly gained experience in public relations, giving TV and radio interviews and helping to raise the profile of the event.

Now in it’s 3rd year, the Lake Scary 5K Run/Walk will take place just before Halloween on October 25 in Lake Mary, Florida at the Lake Mary Preparatory School. It’s on track to be just as successful as the first two events in raising money for cerebral palsy. However, this year, the boys won’t be there with UCP to cheer on their friends, neighbors and classmates.

Martin Konstantinov

Martin Konstantinov

Adrian and Martin’s family just moved to the Washington, D.C. area. Their first order of business after settling in was to contact UCP’s national headquarters in D.C. to try to find some way to stay involved in the cause. While they plan to become businessmen as adults, they are hoping to continue working with UCP as interns or possibly planning a new event in D.C. to replicate their success in Florida.

“While we have not been as involved with the planning due to our move, other families in the community have taken the reins and are currently working hard to make this year great!” said Martin.

Even though they are now far away from their friend Ben who inspired their efforts, the brothers experience with the event and UCP of Central Florida keeps them motivated to do more.Being Honored in 2013

“The best moment from any of the events or work with UCP was seeing the wonderful playground cover that was purchased and installed in one of the UCP of Central Florida campuses with money from the 5K,” they said. “Many of the kids have sun sensitivity and the cover provides much needed shade from the Florida sun. Also, the school purchased Kindles for use in the classrooms and the children really enjoy using them. All of this would not have been possible without the support of the community who participated in or donated to the 5K and in turn became more aware of what cerebral palsy was. We knew that we had made a difference in these kid’s lives.” 

In the long run, the brothers hope that people will become more aware of CP and strive to help find treatment options.

“It is our goal that the event is viewed as an example for people on how they can make a difference in the lives of people with CP in their communities,” they said.

 

Updated news coveragehttp://m.clickorlando.com/teens-help-organize-lake-scary-5k/29400384

 

Writer Follows His Passion in Unique Way

Michael Lerman, who has cerebral palsy, describes how and why he created “420 Flowers Behind XVI Bars” and “Flow of Illuminati,” two books of poetry and lyrics remarkable not only for their content but for the fact that both were written, prepared and designed without any type of writing utensil, keyboard or pointing device such as a computer mouse or touchpad. You can see Michael’s work and purchase his books at www.michaelslyric.com

By Michael Lerman

Flow of Iluminati

Flow of Illuminati

“For as long as I can remember myself, I was always fascinated with music. Having Cerebral Palsy since the age of five months, playing an instrument or singing wasn’t really an option. But, there was something else. I started to read when I was 4. There were plenty of children books and alphabet toys. Nobody remembers teaching me how to read. I don’t remember, either. It just kind of happened. I must have put it all together, somehow. I remember that I used to turn pages by using my face, my mouth and my nose. So, books became everyday companion. I was reading all the famous science fiction, fantasy, and of course, poetry writers. It was music and books that got me through my childhood, and it wasn’t always easy. Although, despite all of the limitations, I never considered myself to be disabled.  Different?  Yes, very different. But then, all of us are “different.” That is one of the greatest characteristics of physical existence.

My first book, “Michael’s Lyric” didn’t start as a book. It started as a desire to create music. The first lyrics in the book were the first ones I ever wrote. Many lyrics were turned into songs. Music is the inspiration. Only four years ago, if somebody would have told me that I would have a paperback, I would have never believed them. I Just do not have the patience to write a book.  It’s just that I gathered all these lyrics and I needed somewhere to put them. A digital book seemed like a good way to go. Then, the paperback was created, as a last minute idea, just 3 months before the end of 2011. I think that an artist cannot be happy if no one can witness their creations. I figured, if I will continue to put out books, I might live to hear my lyrics on American radio.

There are very few authors that use voice software for limited tasks. The general consensus is that it is almost impossible to write, edit, and design (interior/exterior) a book by using nothing but voice software. If that is so, then, this book is the impossible. Not only that, it is also published by using voice software. It takes a good amount of patience and focus to use voice to text. While I write, I listen to an instrumental music the entire time.  So, I have to keep on beat and rhyme, keep check on ideas/concepts, while dictating and catching any mistakes that the software might make, all at the same time.  I am not even going to go into describing what difficulties cerebral palsy adds on to the entire process  I don’t generally mention any of this, because I would rather people to concentrate on the writing instead of challenges and difficulties I might be facing.

I have contacted major magazines, newspapers, television stations, music /art institutions, academies of education, and historical societies.  No one knows of anything like this book.  Throughout human history, there are some recollections of books like this one, books that were written by using air vibrations.  However, as far as I know, no one is aware of existing copies.  That leads me to believe that Michael’s Lyric is the first and only book of its kind.  In 2011, when the first paperback, “Michael’s Lyric (420 Flowers Behind XVI Bars)” was published, I didn’t think of it that way.  I was just happy that it worked.  It was like in the movie Back To The Future.  “It worked!  It worked!  It actually worked!!”

My website, www.michaelsLyric.com, is and always will be the home for the book series.  The domain existed before the book.  It took 16 years, 6 computers, 4 wheelchairs, and many microphones to create this collection of work. Just 8 years before the first lyrics were recorded as a demo, I was 13 years old, starting junior high school, and I knew almost no English. I remember one of the teachers taking an apple out of a lunch bag and saying, “APPLE.” Most people called me by my name, Misha. One day, I was watching TV, and I saw this amazing artist, Michael Jackson. I thought, wouldn’t it be cool if my name was Michael. I didn’t realize that Mihail is Michael, in Russian. And soon as my family moved from Moscow to Chicago, my name became Michael, automatically, out of convenience. At the same time, something else significant happened.  I fell in love with Hip Hop and R&B.  In 2009, when it came to choosing a name for the first book, it was natural, “Michaels Lyric.” That collection was available only in a form of a digital file.  In 2010, I decided that for every new book that is to come out, Michael’s Lyric shall be the name for the book series and the title of the most recent chapter shall be the name of the most recent book in the series.

That brings me to the title of the current book, “Michael’s Lyric (Flow Of Illuminati).”  There are several ways to understand this title.  Illuminati, of course, means enlightened. At some level, all is enlightened, everything and everyone.  Otherwise, nothing could exist.  And so, the title; “Flow Of Illuminati,”flow of humanity.  The 2nd and the 3rd chapters of the book contain 16 bar Hip Hop poetry verses.  Just like many Hip Hop lyricists, I pride myself on the flow of my bars.  Dare I say that there is no one in Hip Hop that writes like me.

Music, lyrics, Hip Hop, stories, the good, the bad and the ugly… it’s all in this book.  And yes, in its own way, it does talk about difficulties of having a physical disability.  But mostly, this book is everything that is human.  It celebrates the ability of Creation to expand and evolve, no matter what. This existence is all about love and passion. Follow yours.”

 

 

Study on the Genetic Causes of CP Enrolling Children & Parents

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Study on the Genetic Causes of Cerebral Palsy (CP)

 

The CP Genetic Research Network is currently enrolling mothers, fathers and their children with CP in an international genetic study that aims to identify new genes that cause CP. In turn, these discoveries will lay the foundation needed to improve diagnosis and treatment for affected children. Participation is simple– simply allow them to collect a cheek swab from the comfort of your home.


If you would like to participate or receive more information, please contact Jessica, the CP Genetic Research Network study coordinator at kruerlab@sanfordhealth.org.

 

Click HERE for their study flyer. You can also learn more by checking out their Facebook page.

 

 

 

University Seeking Individuals with Cerebral Palsy for Research on Employment

 

VCU-RRTC

Are you not working but want to work?

Would you like to talk about your experiences with seeking employment?

Can you share 90 minutes to talk on the phone?

You will receive a $50 gift card to use wherever Visa or MasterCard is accepted for your time if you participate in the phone call for this study.

 

Background:

If the answer to these questions is yes, the Rehabilitation Research and Training Center (RRTC) on Employment of People with Physical Disabilities at Virginia Commonwealth University wants to talk with you! They want to talk with people who have cerebral palsy, including transition age youth, who are currently unemployed. Anyone between the ages of 18 and 64 are encouraged to participate! Transition age youth should be 18 years old to 24.

The RRTC is conducting focus groups for people with physical disabilities about their work experiences. They want to know from you what experiences you face when job hunting.

These focus groups will be held over the telephone. You will receive a toll free number if you agree to participate. Everything you talk about with the RRTC will be confidential!

While your participation will not help you find a job, your input is very important! The information that you provide will be very valuable in the development of RRTC resources on work for individuals with disabilities, their support systems, employers and policy makers. If you decide to participate, the consent process is easy and online at:

http://www.vcurrtc.org/focus/index.cfm

If you need any accommodation to participate or have any questions, please contact Grant Revell at wgrevell@vcu.edu or (804) 828-6989.

Love of Hockey Bonds NHL Player, Boy with CP

Beyond the Offseason,” a show featuring athletes, teams and coaches who give back to their communities in the offseason, premieres this fall with a highly anticipated episode featuring a blossoming friendship between a popular NHL player and a boy with cerebral palsy. The full clip of this episode debuts on You Tube today, just in time to help raise awareness on World Cerebral Palsy Day.

Host Lisa Varga captures the story of Liam Traynor, a 12-year-old boy with CP and a life-long love of hockey. Lisa and her production team, with the help of Mike Balkin and Power Plate brought Liam a donated exercise machine and reunited him with his idol and friend, Philadelphia Flyers player Michael Del Zotto.

Their bond over hockey is obvious, as is Del Zotto’s genuine affection for the young boy. While many athletes give their time and money to help fans with disabilities and hardships, Del Zotto makes a special connection with Liam, exchanging phone numbers and staying in touch via texts. They even argue a little over a call in a hockey game on TV.

Beyond the Offseason is a show designed to shine a positive light on athletes who make a difference. The program was inspired by Lisa Varga’s brother Shane, who is a two-time cancer survivor. Miss Varga is a veteran actor, producer and host with film and TV credits such as Showtime’s Emmy-award winning series “Homeland”, NBC’s “Game Time: Tackling the Past” and “Marley and Me.”

For more, go to www.BeyondTheOffseason.com or follow Lisa and the show on Twitter: @TheLisaVarga, @TheOffseason1

 

Austin’s Journey

The following is a guest post from Jenny Schmit, a physical therapist and researcher at Cincinnati Children’s Hospital Medical Center who works with a client named Austin. Read the story of Austin’s personal journey from frustration to celebration below:

“I work primarily with children who have Cerebral Palsy (CP).  Through work, I have had the privilege of meeting a young man named Austin.  Austin is 17 years old and lives in Batavia, Ohio.  Images of his brain suggest that he had a stroke when he was in utero.  He has hemiparetic CP.  Austin plays the computer and watches television.  He is a teenager and like lots of them, he spends an awful lot of time sitting still.   Austin

Although the damage to Austin’s brain will not get worse, his mobility and function can continue to deteriorate. Unwelcome changes to bone, muscle, and the cardiorespiratory system can occur over time when patients with disability aren’t proactive. One of Austin’s best defenses is also a hot topic in public health today. Research suggests that decreasing the amount of time we spend being sedentary, and increasing the amount of time we spend engaged in physical activity is critical for everyone, but especially for children with CP!

At a clinic visit in April of 2014, Austin felt frustrated. Physical fitness testing at school meant running a mile, and it didn’t go well.

He seemed to be compelled to do something about it. Austin set an admirable goal; he announced that he would like to run, in its entirety, a 5K race.  He scoured the internet for his just right challenge, signed up for the Panerathon, in Mason, Ohio, which raises money to fight hunger (probably because the race includes a giveaway of free Skechers). He named the team that would support him the CP Warriors.

He worked tirelessly over the summer.  He spent Mondays, Wednesdays, and Fridays with outpatient physical therapists at Cincinnati Children’s.  He strengthened legs. He grew better abdominal muscles than most of the healthcare professionals who treat him. He practiced coordinated activities like skipping and jumping.  He walked on a treadmill.  He did silly things, like moving rings from one cone to the next with his foot or kneeling on top of big therapy balls without holding on.  And he ran.  He ran around the Medical Offices Building and met the people who live in the neighborhood.  He ran up and down the big hill that the Hospital lives on and doctors and nurses clapped for him.  He ran in the August heat and sometimes in unexpected rain. Every weekend, he ran around the trail at Lunken Airfield, with a team of volunteers from the hospital and CP Clinic and people who believed in him.  He ran with a dog, and sometimes a donated iPod shuffle and Rodney Atkins.  He ran while he talked about zombies and how to beat Halo and fried pickles.  He never ran without smiling.  His Mom filled a scrapbook with photos because while he ran, she and her husband filled up with pride.

Two things happened during this journey.

One is that Austin grew.  He threw up during a mile run in physical education class.  On Sunday, September 21, he will finish the 5K faster than many individuals without physical disability.

The other is that the people around him grew.  We thank him for his inability to perceive hurdles.  We thank him for reminding us that few things are out of the realm of possibility.  And we thank him for reminding us to carry ourselves forward (unless we are practicing walking backwards).

Please share his story.

If you live near Mason, Ohio, please come to applaud him at his finish line this Sunday.

And for heaven’s sake, can someone please make sure he gets a pair of size  9 shoes?!”

 

UPDATE: Austin completed his run! Watch updated news coverage here.

New Film Features Comedian with Cerebral Palsy

A new film released on Friday features Josh Blue, a stand up comedian with cerebral palsy known for winning NBC’s Last Comic Standing competition in 2006 and subsequent comedy specials on Comedy Central and Ron White’s Salute to the Troops on CMT. Dat Phan, who also competed to be a Last Comic Standing also stars.Josh Blue

“108 Stitches” follows a baseball team with one of the longest losing streaks in college history as they come to the realization that the school, led by the corrupt and unethical President of the University, has plans to disband the entire program.  Hilarity ensues as the misfits have just one afternoon to execute a plan to fill the stadium, sign the top recruit on the planet, and help send their coach out with a bang. Josh Blue stars as an unlikely pitcher who spins wild throws in just about every direction but the batter’s.

Affiliate UCP of Los Angeles, Ventura and Santa Barbara Counties was invited to the exclusive Hollywood premiere of the film this week and got a chance to speak with Josh Blue and the producers of the film about the character.

“Josh Blue said what he most liked about the character is that he is treated equally.” said Amy Simons, Chief Development Officer of UCP of LA. “Pretty much every one in the film is made fun of and Josh’s character is no exception. He’s not singled out because of his disability.

Order your copy now through this link and the producers of “108 Stitches” will donate a portion of the proceeds to UCP to help provide services support for people with disabilities.

UCP’s STEPtember Challenge Begins Today!

10,000 Steps Daily Minimum

 

2,000 participants across the U.S.       are taking 10,000 steps a day from September 3-30                 in support of UCP.

United Cerebral Palsy (UCP) is pleased to announce the launch of the third annual STEPtember fundraising event today, formerly known as the World CP Challenge. STEPtember is an international health and fitness event that aims to raise awareness and support for individuals with disabilities and their families.

From September 3-30, STEPtember participants will get active while supporting a great cause. Throughout the event, more than 5,000 teams worldwide will challenge themselves to take 10,000 steps a day. Each of the steps—or bike rides, yoga classes, or physical therapy sessions, as nearly any activity can be counted—will propel the teams up virtual mountains and track their progress. Teams can compare their fundraising and step activity against others from around the world, racing each other up the seven tallest mountains and spurring their efforts to new heights. Together, the teams will help to raise critical support for the nearly 180,000 individuals with disabilities that UCP serves each and every day.

Already, more than $115,000 has been raised in the U.S., and well over $1 million internationally through thousands of participants. 

“UCP is very excited to kick off this year’s STEPtember event! This month promises to be an incredible, worldwide effort to raise awareness and support for people with disabilities. Steptember is such a great way for anyone, regardless of ability, to get active and truly impact our organization in the process,” said Stephen Bennett, President and CEO of UCP.

“Our family is personally affected by disability and we know first-hand what perseverance can accomplish. Joining in the STEPtember campaign, like a of Team Hoyt, a father-son racing duo who have volunteered to be UCP’s STEPtember ambassadors this year. Team Hoyt

Here’s how to get involved in the STEPtember Challenge: 

1) Learn More –  Check out the FAQ section on the STEPtember website, learn more about the communities that UCP serves, and understand how to get started!

2) Register Today – It’s not too late to get involved! Register today at www.steptember.us and we’ll connect you with a local affiliate that can provide an event packet and information to jumpstart your involvement.

 

3) Donate Now – Even if you don’t want to take the challenge and register, support the cause by donating to the UCP National team. We’re aiming to raise $10,000. Every dollar donated will provide critical funds to sustain community programming, and purchase much needed equipment for individuals with disabilities and their families.

Steptember will culminate on October 1st with World Cerebral Palsy Day, a global innovation project to change the world for people with cerebral palsy.