A Journey to Self- Acceptance

This guest blog comes from Kim Collins, a 28-year old substitute teacher from Little Rock, AK. Kim shares with us her personal journey to self-acceptance, and how she realized that having Cerebral Palsy (CP) was her gift. 

I was born in July of 1987 two months premature to a very young mother. I originally weighed 3 pounds 3 ounces, but in the process of being flown to Little Rock Children’s hospital I lost all bodily fluids dropping my weight to 1 pound 3 ounces. I was not formally diagnosed with Spastic Cerebral Palsy until the age of three. Doctors told me that having CP was a result of being in the birth canal too long. Once diagnosed, I was not expected to meet any milestones, essentially being labeled as “failure to thrive”. This meant that being able to walk, talk, or even feed myself were probably out of the question. I was and still am very fortunate to have a loving mother and family. Although the diagnosis sounded grim, and after the initial shock, my mother fought on her own to get me in to see the proper orthopedic specialists.

Kim Collins

Kim Collins

Cerebral Palsy mostly affects the right side of my body and both sides below my waist. I’ve had 13 different corrective surgeries. I spent nearly every summer in cast correcting various issues. This is due to the fact that I was born premature the muscles in my feet and my legs were underdeveloped causing the bones in my ankles to shift into incorrect positions. I had hip grafts placed in my feet to restructure my ankles among other things. My last surgery was the summer before I began college in 2006. I believe the moments in between each of those major surgeries have made me the individual that I am.

My mother treated me like any other child and that helped tremendously. Aside from the surgeries, which were required in our minds to improve my quality of life, I was just your average child; I played outside, went to school, back talked, and when my brother came along when I was two, we were double trouble! Even though I could only crawl on my hands and knees I gave him, my mom, and everyone a run for their money. As a teenager, being “different” was hard to understand. I always asked: “Of all people, why did I have to be different?” I shed many a tear, and I wished that there were a magic pill, or some way for me to have new legs. With my mother’s help, I learned to embrace my differences. I consider myself to be exceptionally creative when it comes to doing everyday activities. I may not get dressed or cook meals like the average person, I have to get creative in the way I manage to do it.

Never let a medical diagnosis determine your life and the goals you have set for yourself. Had my mother settled for the diagnosis I was given, I would be bedridden with around the clock assistive care. Instead I am well educated, physically active, and socially accepted by many. I work, travel, have healthy relationships, and would hardly describe my life with the words Cerebral Palsy or having a disability. Individuals can be rude, but I find mostly it is because of their lack of knowledge and sense of fear to ask. I encourage people often to ask me any questions they want, because if I do not give them the opportunity to ask, how will they learn? If I can educate others I can essentially promote acceptance. Always look for the silver lining. In the toughest of situations, decide what the positive is, no matter how big or small. It may be the only thing that can get you through. Never be afraid or too stubborn to ask for help. I used to be this way and still have a tendency to do so sometimes. I had someone tell me once if “I do not let others help me how were they supposed to learn how?” So next time you ask for help just remember that you are teaching someone and giving them the opportunity to give back.

Kim and her boyfriend, sightseeing

Kim and Her Boyfriend

My lifetime accomplishment as of now is the fact that I did not let my disability dictate my attitude and overall my life. I have accomplished a high school diploma, an associate’s degree, and a bachelor’s degree. I walked the stage on each occasion with the help of friends. This is a feat that was never supposed to be achieved. I am a walking talking testimony. I would like to think I would still be the humble sweet optimistic person I am without my disability, but a big part of me says God knows what he is doing when he gives us this lifelong trial. I would not take the pill. Having this disability is my tool, and God has given me a purpose. Fortunately, over time he has given me the attitude and support system to complete this purpose. I am a sister, daughter, teacher, friend, girlfriend, granddaughter, and more. Then I have Cerebral Palsy. It does not define me, and it does not have to define you.

Everybody Matters: The Hite Family

When Janelle Hite gave birth to her triplets at only 24 weeks, she knew that every moment with them counted. Sadly, one of her triplets passed away after only a day. Both twins struggled for survival, with Nathan becoming septic and having to lose his right hand. Months later, both twins were diagnosed with CP. After four and a half months, Janelle was finally able to bring her boys home.

Nathan Hite

Nathan Hite

She sought the assistance of her local UCP affiliate when the twins were nine months old. Since Owen and Nathan’s needs are complex, the family depended on UCP’s early intervention program. Led by the National Office in Washington, DC, UCP has network of nearly 80 affiliates that provide families with support, advocacy, and programs such as Early Intervention. In addition to the program allowing the boys to alternate physical and occupational therapy, their doctor is right there with them, saving the family a trip to the hospital. The family spends a lot of time there; Hite estimated that the boys have had over 600 therapy sessions in a year’s time. UCP has a great relationship with the school system, having staff visit them to make sure they are getting the services they need, while learning along with the other students.

Hite cannot say enough about the staff at their local affiliate: they know the boys by name, their individual needs, as well as their genuine warmth and care for the well-being of her boys. She says they encourage them even when times get hard and want the absolute best for them. She says although neither of the boys can walk, they can say a few words and communicate to their therapists, their family, and each other. They use augmentative

Owen Hite

Owen Hite

communication devices. Nathan uses a flat touch-screen (similar to an ipad). The device gives him the ability to choose symbols. He can also type out his family members names! Owen uses a mounted computer that gives him the ability to select letters and word choices with his eyes. “Technology is amazing, and it’s opened up a world of endless possibilities for our children and others!” Hite says.

The boys are inseparable with their older brother Logan. Although there are many things that the boys are still unable to do, Logan chooses to share a room with his younger siblings and spends hours playing with them, even if he is three years older. The twins are now five years old and The Hite’s recently added another member to their family. They adopted 8-year-old Karis from Ukraine. Like her siblings, Karis also has learning, speech, and physical disabilities. The family figured that they had the extra room, augmentative devices, and great therapists. Most of all, they have an abundance of love to share. “We believe everybody matters. We want all of our children to be who they are meant to become. They’re all perfect, just as they are. Whatever we do in life, they’ll be right there with us. We want them all to see the world as we do and have the same opportunities,” Hite says.

Your support of UCP makes success stories such as the Hite’s possible. Find out more about how you can help today.

UCP Signs on to Letter to Congress Supporting the ACA

In time for the 5th anniversary of President Barak Obama’s signing of the Affordable Care Act (ACA) into law, UCP has signed on to a letter expressing our support for maintaining affordable access to comprehensive health insurance coverage for people with disabilities. Acting as part of the Consortium for Citizens with Disabilities (CCD) – a coalition of more than 70 organizations working for people with disabilities and their families – UCP joined in sending this letter to the U.S. House of Representatives and Senate demonstrating that support and expressing our concern that proposals and legislation being debated in the 114th Congress which may undermine the progress being made to ensure people with disabilities have access to the care they need to lead healthy, fulfilling and independent lives.

Read the full letter here.

 

 

Videos Show That #CerebralPalsyCAN During Awareness Month

March is National Cerebral Palsy Awareness Month. Throughout the month, United Cerebral Palsy will be encouraging people with cerebral palsy to share the many things they enjoy and can do using the hashtag #CerebralPalsyCan on social media. On March 25, National CP Awareness Day, UCP and our partners in this campaign (listed below) will will feature submitted videos on our social media channels and websites.

Cerebral palsy (CP) is a broad diagnostic term used to describe a problem with movement and posture, due to damage or abnormalities in the brain that makes certain activities difficult. It is the most common motor disorder and the second-most common disability found in children. UCP aims to demonstrate through short, light-hearted videos that people with cerebral palsy have a range of interests and abilities, and in that respect are no different than anyone else. Find out more about the campaign and watch the video on My Life Without Limits, UCP’s new online resource and community for individuals with a range of disabilities at www.mylifewithoutlimits.org.


#CerebralPalsyCan Campaign Partners

United Cerebral Palsy: http://ucp.org/
My Life Without Limits: http://mylifewithoutlimits.org/
HandicapThis!: http://handicapthis.com/
Love That Max: A Special Needs Blog: http://www.lovethatmax.com/
The Cerebral Palsy Swagger: http://cpswag.blog.com
Ms. Wheelchair Michigan: http://www.mswheelchairamerica.org

UCP Board Chair to Run National Human Services Assembly

Gloria Johnson-CusackUCP is thrilled to announce that the chair of our national Board of Trustees, Gloria Johnson-Cusack has been selected to head the National Human Services Assembly as its new president and CEO beginning in April. The Assembly is a Washington, D.C.-based organization comprised of nearly 90 national nonprofits and is focused on shaping public dialogue and building capacity for the human services sector. Gloria has served on the UCP Board for several years, becoming Chair in October, 2014. We are proud to have a leader of her caliber helping guide UCP. Read more below from today’s press release from the National Human Services Assembly. 

 

National Human Services Assembly Names Johnson-Cusack as New President and CEO

WASHINGTON, March 2, 2015—The National Human Services Assembly, a D.C. based organization composed of nearly 90 national nonprofits, announced the selection of Gloria Johnson-Cusack as president and CEO effective April 6, 2015.

“Gloria’s stellar record in leadership positions across the nonprofit, for-profit, and governmental sectors gives us complete confidence that she is the right person to continue to grow the National Assembly’s ability to deliver, both for its members and for society at large,” said Cindy Lewin, executive vice president and general counsel at AARP, and part of the search committee at the Assembly.

Brian Gallagher, president and CEO of United Way Worldwide and standing vice chair of Leadership 18 echoed Lewin’s sentiment, “Gloria is well-suited and well-prepared to lead the Assembly. She is all about collaboration, knowledge sharing and innovation within the nonprofit community.” Gallagher continued, “I’m certain she will draw on her years of experience working with our CEO cohort. Together at Leadership 18, they have tackled the toughest community and leadership challenges of the day.”

Johnson-Cusack brings more than 20 years of expertise informed by leadership positions in the private sector, charitable sector, U.S. Congress, federal and municipal government, national presidential campaigns and the White House. Before joining the Assembly, she was executive director of Leadership 18, which is an alliance of CEOs responsible for leading the oldest and largest human services nonprofits. Almost all Leadership 18 organizations are members of the Assembly.

“I have proud working-class roots and feel a deep, personal sense of responsibility to create more opportunities for more people. The status quo is not good enough,” explained Johnson-Cusack.

“At its heart, that’s what the Assembly is about and it is my honor to champion change in partnership with these passionate, innovative leaders.” Johnson-Cusack is national chairman of the board of trustees for United Cerebral Palsy. She served as senior vice president at GMMB, a D.C. based strategic communications and advertising firm where she advanced social and health causes on behalf of key nonprofit organizations, foundations and national associations—from improving supports for low-income students completing college to advancing diversity in the practice of law and medicine to addressing obesity nationwide.

In the public affairs arena, Johnson-Cusack served as director of the Office of Congressional Relations at the Peace Corps, special assistant to the President in the White House Office of National Service, and director of constituent relations at the Corporation for National Service. She was chief of staff for the D.C. Office of the Inspector General and was policy advisor to Congresswoman Eleanor Holmes Norton and Senator Albert Gore, Jr.

Johnson-Cusack holds a bachelor’s degree from Columbia College, Columbia University and a master’s degree in public administration from the Key Management Program at American University. She is a founder of the Eli J. Segal Citizen Leadership program at Brandeis University.

“I’ve been impressed with Gloria’s willingness and ability to forge coalitions among very diverse partners nation-wide,” stated Adam Meyerson, president of the Philanthropy Roundtable. “She demonstrated this ability in our shared advocacy to protect charitable tax incentives for the last few years. She listens and looks for shared interests and goals.” Meyerson added, “The philanthropic community needs more of that.”

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About the National Human Services Assembly The National Human Services Assembly, a D.C. based organization comprised of nearly 90 national nonprofits is focused on shaping public dialogue and building capacity for the human services sector. Assembly members, and their local service networks, collectively touch, or are touched by, nearly every household in America—as consumers, donors or volunteers. They comprise a $62 billion sector that employs approximately 1.2 million workers operating from 100,000 locations. The Assembly facilitates a robust learning community among nonprofit professionals and provides group purchasing services to more than 3200 organizations.