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.

Engage Series Kicks off with Financial Education and Networking!

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IMG_3188On September 24, 2014, United Cerebral Palsy (UCP) and Student Veterans of America (SVA) kicked off their new educational and networking series, called “Engage: A Diverse Event Series,” with an evening filled with food, drinks, networking and financial education at the National Youth Transitions Center. As will other events in this series, this event welcomed youth and young adults with disabilities and young veterans with and without disabilities throughout the Washington, D.C. metro area. It featured a specific subject of focus (financial education) and addressed key social and educational components for the attendees.

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As The HSC Foundation’s signature program, the National Youth Transitions Initiative assists youth and young veterans with disabilities in creating and living a self-directed path to adulthood and employment. Through this initiative, the Foundation developed the National Youth Transitions Center and the Youth Transitions Collaborative, which serve as sponsors for the event series. “We hope that ‘Engage: A Diverse Event Series’ will not only provide useful information for youth and young veterans with disabilities, but also allow a welcoming atmosphere to connect and network with each other,” said Ryan Easterly, manager of the Foundation’s National Youth Transitions Initiative. “The financial-education event was a great start and we look forward to watching the series grow over the next few months.”

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Attendees were given various financial information and statistics and participated in interactive activities, led by representatives from TD Bank. “We were pleased to participate in the kickoff event of UCP and SVA’s Engage series,” said Mary Ann Francois, Vice President and Store Manager of TD Bank’s 20th & K Street location in Northwest Washington, DC. “So many of us work hard to make the most of our funds and resources and plan for the future. This, of course, is no different for young veterans and individuals with disabilities and we were all very excited to be a part of such an interactive and fun evening.”

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“At Student Veterans of America, we know how challenging the transition can be from the military to civilian life,” said John Kamin, Program Manager at SVA. “Through the Engage series, we’re showing our veterans that they are not alone in the journey. We are excited to be a part of it, and believe it brings many educational and networking benefits to those we serve, as well as offer the opportunity to connect with others who may share similar experiences.”

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The series blends well with UCP’s upcoming launch of its My Life Without Limits program, which has a large focus on the transitions in life for individuals with disabilities. “UCP understands the importance of supporting people with disabilities through transitions in life,” said O’Ryan Case, UCP’s Director of Membership and Public Education. “As will our My Life Without Limits program, the Engage series helps us to support these individuals by bringing information to everyone and helping to connect them with others who may share the same or similar interests and challenges. We thank TD Bank for helping us launch this series, as well as the National Youth Transitions Center and Youth Transitions Collaborative for supporting this project. It has been great working with SVA and we look forward to watching our series grow.”

 

Check out the video below to learn more about the event!

 

 

UCP and SVA look forward to the next event in the series, an “Adaptive Sports Networking Reception,” which will be held on October 21, 2014 from 6:00 – 8:00PM EST at the National Youth Transitions Center (2013 H Street NW, Washington, DC 20006) and feature representatives from Disabled Sports USA who will share their stories, answer questions and introduce the world of adaptive sports to attendees. Like all of the events in the series, it is free to attend and food and drinks will be provided. Please be sure to REGISTER HERE. Learn more about the series HERE!

If you have any questions, contact O’Ryan Case at (800) 872-5827 or ocase@ucp.org.

University Seeking Individuals with Cerebral Palsy for Research on Employment

 

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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.

UCP Chats with U.S. National Paralympic Soccer Team

UCP recently spoke with Stuart Sharp, Head Coach of the U.S. National Paralympic Soccer Team, and two of the team’s players, Chris Ahrens and Rene Renteria to learn more about the sport. Chatting with us fresh after a team’s practice in San Diego, California, Sharp discusses the rules of the sport, its classification system, ways people can become involved and more. Ahrens, who has cerebral palsy and Renteria, who has a traumatic brain injury, share their stories of how they became involved with Paralympic soccer, as well as discuss their training routines. Check out the full video below! If you would like to learn more, you can follow the team on Facebook and Twitter or visit http://www.ussoccer.com/paralympic-soccer.

 

Remembering a Great Camper, Volunteer, Staff Member and Brother

Guest post by Bill McCool, Executive Director of UCP of Delaware

 

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Peter Collins was a camper, volunteer and staff member for United Cerebral Palsy of Delaware’s Camp Manito.  Mary Arden Collins, who is a singer/songwriter in Los Angeles, recently produced a video about her wonderful brother Pete, who passed away in May of this year.  The video tells a great story about Pete, who found ways, both big and small, to give back to the camp and the people he loved.   

Pete started at Camp Manito when he was three years old.  His mother put him on the bus that came to pick him up at their house, but she secretly followed the bus to make sure that he was going to be ok.  It must have worked out, because for the next 35 years, Pete came to camp every summer.

Mary Arden also has her own camp memories.  As a teenager, she became one of the camp volunteers and eventually a counselor.  Mary Arden pursued a music career, but she has always been proud of her association with UCP’s Camp Manito.  When she would come back to Delaware, she would come to the camp and perform for the kids.  She and Pete, who played a bodhran drum, performed together.

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There has always been a sense of family at UCP’s Camp Manito, probably because we have watched so many children grow up here.  As small children, they are campers; as teens, they become volunteers; as high school and college students, they become staff; as adults, they move into the community and they find ways to give back to the program and to the kids who are following after them.  And while the progression is not the same for everyone, there is a feeling of belonging and sharing that envelops all of the staff, volunteers and campers.

When Peter was too old to attend as a camper, he became one of the camp staff and then a volunteer.  His annual position here was camp receptionist.  He answered the phone, directed callers to UCP staff and took messages.  In the morning, he greeted campers and their parents when they arrived; in the afternoons, he used our public address system to call campers to the lobby when their parents came to pick them up.  He chased down staff to give them their messages.  During the off season he stayed in touch with his camp friends, calling them and talking about good times at camp, telling them he was anxious for summer’s return. He was here every June; he always came back to take care of the phones and do his job.  He was good at what he did, and he was reliable; we always knew we could count on him.

Like any charitable organization, UCP has had its up and down periods, and during one down period, UCP had to cut back the number of weeks the camp could be open from six to four weeks.  Pete made a decision that changed the course of that summer for all of the children who were here.  He donated enough money to help UCP stay open for an additional week of camp.  His love for the camp, our campers, and the work he was doing meant a great deal to Peter.  He gave his donation happily, and he was here that week doing his job as usual.  His donation meant others could enjoy what he had always enjoyed – a longer summer together with the friends they loved.

Pull together any group of adults who attended camp when they were younger and the stories you will hear will amaze you.  It’s the power of camp; it’s the power of their shared experience.  They have an appreciation for the program and a love for the people they grew up with.  Peter was that person too.  He showed his deep feelings for our children and the camp that particular summer and every summer he was here.  We lost Peter this year, but he will never be forgotten by the folks who all shared the same love he had for Camp Manito.

Please take a few moments to watch and hear the video put together by Mary Arden.  The song was written by Mary Arden and Pete was her inspiration.

Bill McCool

 In Memory of Peter Collins, by Mary Arden

 

Navigating the Worlds of Education and Employment with a Disability

Special guest blog post by Maureen Marshall, Electrical Engineer

 

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Having cerebral palsy (CP) definitely has its challenges and there is no denying that, but there are also so many possibilities for achievement in both education and where that education leads you down your career path.  I was diagnosed with CP at the age of 2 and, though my parents were told I may never attend regular classes in school or actually ever learn to read and write, I proved everyone wrong and successfully attended regular classes– even advanced classes because I pushed myself to prove everyone wrong and excel.  I graduated, not once but 3 times: I graduated from high school; I have a Bachelors of Science degree in Electrical Engineering, a Master of Business Administration degree in Technology; and a Certificate in Strategy and Innovation from the Massachusetts Institute of Technology (MIT).

 

Believe it or not, the biggest challenge I had in school was with the teachers.  While I was in elementary and middle school, I was forced out of orchestra class because I did not hold the bow correctly and I failed typing because I did not type with both hands.  In both cases, neither teacher was willing to recognize that I physically could not do what they wanted me to do, nor even the fact that I was able to succeed through modifying the way I performed the task.  Not having full use of my right side, I held the bow with a firm grip; no pinky finger up and I typed with one hand; not both. 

As I moved through high school and college, I learned to not register for classes that would be a physical challenge for me and cause further pass/fail issues, such as gym and swimming classes.  It was not worth the fight with the school administrators to get them to accept my limitations.  Instead, I enjoyed sports with my friends, who accepted these limitations and took swimming classes on my own where there was no pass/fail criterion.  When it came to choosing a field of study in college, I recognized that I would need a career that focused on my strengths and one that I could advance in.  I always loved and did well in math and science courses, so engineering was the path I chose to take– which I have had great success. Engineering allows me to use my knowledge and experiences, with little or no physical activity. There are so many different engineering positions and fields to chose from– one can definitely find one that fits not only their strengths but their abilities.  I have also found that industry is very accommodating to those with disabilities and will make every effort to ensure all obstacles are removed.  For instance, if you chose to work in a manufacturing plant, where getting around can be difficult, they have been known to install elevators or even mark walkways to allow wheelchair accessibility.

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I’ve experienced some interesting moments from the time I graduated to now– and one I’ll never forget is my first interview!  During the middle of the interview, I had to leave the room to get a form at the request of the person interviewing me and, when I came back to the room, I landed flat on my face.  For some reason, from the time I left the room to re-entering it, someone had placed a 2×4 board across the bottom of the doorway, which I tripped over when walking back into the room.  Mortified and embarrassed, I decided to get up as quickly as possible, gain my composure, laugh (instead of cry) and simply comment, “Well, that wasn’t there before!” and move on with the interview like nothing happened.  To this day, I will never know if that was an interview tactic or a simple mistake of someone working in the office area.  However, I am happy to say I got the job and I think a lot of that had to do with how I handled that situation! 

I have never called out my disability to any potential employers or future colleagues and over the years very few have inquired, even though it is very noticeable.  What worked for me, is taking on every situation, like there is nothing limiting me, and simply ‘adjust’ as needed.  An obstacle I have to overcome on a daily basis is when I am with a group heading either to a meeting or out to lunch and they head for stairs.  I will simply let them know to meet me by the elevator or ask where I could meet them after I find the elevator.  I have to say I have been very blessed with employers and colleagues that have never called out my disability either.  Do not get me wrong, there have also been a few challenging moments throughout the years too.  

Several years back, there was an incident where I was out of the country for a business trip. While at dinner with a group of colleagues, one of them decided to call me “Crip” (a term short for cripple).  I was shocked when I heard this reference and especially from a superior.  At first, I ignored what I heard, hoping I was mistaken.  However after he repeated it several times, I quickly stated in return, “I am sorry.  Are you talking to me?  Because if you are, I do not answer to that, nor does my disability change who I am and why we are here.”  Unfortunately for him, he continued to refer to me as “Crip,” even after my request throughout the dinner.  All I could do was continue to ignore him.  I was very surprised that the others around the table never participated nor tried to stop him right then and there.  However, once we landed back home and returned to work, he was fired on the spot because they had addressed their concerns with our Human Resources Department without me knowing– taking quick care of the issue. 

I have also had bosses that have treated me differently than others, not because of my performance, but because they were not comfortable with my disability.  In cases like this, I have learned it’s best to move on and get out from under them as quickly as possible– take actions in my own hands and find a new position.

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In today’s day and time, if one is treating someone differently– not promoting them, holding them back from situations or otherwise– it’s their problem and not yours! 

In the end, I am very proud to state that I am witness to the fact that the professional environment for persons with disabilities has improved over the last 20 years.  More and more buildings are accessible and employers are welcoming the diversity in the workplace.  Unfortunately, there will always be those that still need to be educated on acceptance of persons with disabilities.  The good news is that we are the change agents and it is up to us to teach them that those with disabilities are very capable of being high performers.

If I were to offer advice to students with disabilities who are interested in careers in engineering and technology, it would be– do not let anyone or anything stop you! 

 

Marshall is from Royal Oak, Michigan and has been married for nearly twenty years. She has three sons and has held a career as an Electrical Engineer in the automotive and defense markets for more than twenty years.

Social Security Disability Benefits: Can I Apply?

by Lisa Giorgetti, Community Liaison, Social Security Disability Help

 

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Everyone is encouraged to live life without limitations, no matter who you are and what you face on a day-to-day basis. Just as many people encounter daily obstacles, the disability community has additional challenges to face, from going to physical therapy to paying dreaded medical bills. Health and other costs of living can certainly add up and put strain on your wallet. Social Security Disability benefits can help your family obtain some desired financial relief. Knowing all the facts and information about disability benefits helps better prepare you for the application process in order to file a successful claim.

 

 

Preparing for the Disability Application Process 

There are a number of steps to take in preparation for the application process. These steps will help ensure the success of your Social Security Disability claim.

 

Disability Benefits Programs

The first thing to consider when applying is to decide which program you’re eligible for, either Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI).

If you’ve been a member of the workforce and suddenly find yourself unable to complete any sort of work activity and receive income, you could qualify for SSDI. You need to have paid the correct amount of Social Security taxes, depending on your age, when you were working. http://www.disability-benefits-help.org/ssdi/qualify-for-ssdi 

But what if you haven’t had the chance to obtain enough work credits or if the SSDI payments aren’t enough? Then SSI could be your answer as it’s a need-based program. You will just need to prove that your assets and household income are below the Social Security Administration’s (SSA) threshold. Also, if you have a child living with a disability and you meet the asset and income limit, you would want to apply for SSI through the parental deeming process. http://www.disability-benefits-help.org/ssi/qualify-for-ssi

 

Determining Disability Under SSA Guidelines

No matter what disability benefits program you apply for, whether SSDI or SSI, you need to be classified as a “disabled” individual by the SSA. This means that your condition needs to be long-term, at least 12 months, or permanent that absolutely prevents you from performing any sort of work activity whatsoever.

The SSA also has published a “Blue Book” of medical listings with detailed criteria required to qualify for disability benefits as a result of a disabling condition. If your disability is listed in the Blue Book, you will just need to prove that you meet the requirements set forth. If, on the off chance, your condition isn’t listed, don’t worry. You will just have to prove that your condition meets the criteria of one of the listings or that it results in absolute inability to work. http://www.disability-benefits-help.org/disabling-conditions

For example, cerebral palsy is found in the Blue Book in Section 11.07 under neurological disorders. Since cerebral palsy is a long-term condition, your chances of receiving benefits can be likely. This is because cerebral palsy is considered by the SSA to be a “presumptive disability”. As a result, you may be able to: 

  • Start receiving payments, while the SSA reviews your application;
  • Receive these payments for up to six months during the application process; and
  • If SSA then denies your claim, you do not have to pay back the money sent to you.


Getting Together the Paperwork You Will Need
           

When getting ready to apply for benefits, you will need to show SSA proof of:

  • United States citizenship or legal residency in the US
  • Age
  • Living Arrangements
  • Medical Records
  • Income and Assets
  • Work History

Make sure to provide originals with your application, and keep copies to yourself (the only copies the SSA will accept are certified copies from the entity that issued them).

 

Meeting Eligibility Requirements 

As previously stated, each medical condition listed in the Blue Book has eligibility criteria that need to be met in order to be considered disabled. If you’re able to meet the requirements, you will need to prove to the SSA with proper documentation, such as doctor’s notes or observations from a therapist. 

In the example of applying with cerebral palsy, as an adult or child, the specific requirements vary:

For a child to be eligible to receive benefits due to cerebral palsy, the SSA will compare the child’s motor skills and abilities to those of children within the same age group. For example, if the cerebral palsy interferes with the ability to:

  • Take care of personal hygiene
  • Feed himself or herself
  • Participate in activities for children within his or her age group without assistance
  • Problems with one of the above, coupled with seizures, a low IQ for his/her age, and/or speech, hearing, or vision impairments
  • Using his or her hands, arms, and/or legs

For an adult applying for SSI or SSDI benefits due to cerebral palsy, they must keep in mind that in order to qualify for benefits, the disability has to affect the applicant’s activities of daily living. These activities include:

  • Walking
  • Standing
  • Seeing
  • Hearing
  • Speaking
  • Writing
  • Household chores

If your cerebral palsy interferes with these activities, then you have a higher chance of being approved for disability benefits.

 

The Application Process

There are many SSA field offices located throughout the country; so it should be easy to find a location that is close to you. However, you may apply either:

  • In person
  • By mail
  • By filling out an application online

 If you decide to apply in person, it would be better to call in advance to schedule an appointment, since sometimes the field offices are crowded and you may have to wait in line.

 

What Happens if Your Initial Claim is Denied?

If your claim is denied, no need to panic. There’s still a possibility to be approved for benefits. In fact, most people are denied when they first apply for benefits. No matter how tempting it may be, don’t simply apply again. Instead, use the appeal process. The denial letter will include the information about how to file an appeal. Make sure you appeal within the 60-day period provided for doing so. It’s also helpful to know that:

  • Some jurisdictions require a reconsideration process before you can get a hearing; while others will allow you to schedule a hearing without the reconsideration step.
  • The person who will be in charge of your hearing will be an Administrative Law Judge (ALJ)
  • The ALJ was not involved in your initial application process
  • Sometimes, a videoconference hearing will be allowed. If this is the case, the SSA will notify you beforehand.
  • The ALJ will ask you questions about your disability
  • A vocational expert may also be present and ask additional questions

  

What Can You Expect in Terms of Benefits? 

Once you’re approved for Social Security Disability benefits, you can expect to receive additional payments (beyond the initial presumptive disability payments):

  • Between four to six weeks from when you receive your notification of approval
  • On the first day of every month
  • SSDI benefits are based on the applicant’s work record and earnings while working
  • SSI benefits are independent on the applicant’s work record; so even if you have never worked, you can still be eligible to receive SSI benefits.

 

Should You Hire an Attorney? 

Disability lawyers and representatives can assist you throughout the entire process of applying for SSI or SSDI benefits. When initially applying for benefits, getting all of the paperwork together can be done by you or a loved one; so if you are comfortable getting that part of the process done without legal assistance, then you can do so.

However, if your benefits are denied and you have to go to a hearing, it would be best to appear with an attorney, since they will know which questions to ask you to better show the judge that you are entitled to benefits. 

You don’t need to worry about having to come up with the money to pay your Social Security Disability lawyer. Their fee is a percentage of the benefits awarded to you in the form of back pay. Also, you don’t have to worry that your funds will run out in order to pay for your lawyer, since, by law, they can only take up to 25% (up to a maximum of $6,000) of any past due benefits owed to you. 

Although the process can appear to be daunting, every year, thousands of people are able to get their benefits successfully. If you or your loved one lives with a disability, you have the option to apply for SSI or SSDI benefits. These are benefits you may be entitled to by law, and they can significantly alleviate any financial stress you may be experiencing. 

 

Lisa Giorgetti is from Boston, MA and is the Community Liaison for Social Security Disability Help where she works to advocate for disability awareness and assist people throughout the Social Security Disability application process. For more information about Social Security Disability assistance, visit http://disability-benefits-help.org or contact via email help@disability-benefits-help.org.

UCP’s Summer Interns Soak In Affiliate Visit

by Kyle Khachadurian, External Affairs Intern, Kaitlyn Meuser, External Affairs Intern and Michael Wothe, Affiliate Services and Public Education Intern at UCP’s National Office

 

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Recently, we took a trip to UCP of Central Pennsylvania (UCP of CPA) in order to get a taste of what an affiliate does and how it operates. The first thing we noticed is that UCP of CPA is huge! Working in UCP’s national office, we interact with people through referring them to their local UCP affiliates and/or other resources. Seeing, firsthand, an affiliate that treats the slogan “life without limits” in such a direct way refreshed all of us.

 [Left: Staff from UCP National and UCP of Central Pennsylvania at Pathways Academy]

The work going on at UCP of CPA is quite spectacular. We were able to visit several of their departments and programs: Pathways Academy, a residence for adults with disabilities that is fully equipped with SmartHome technology. The SmartHome technology consists of sensors on all of the windows, doors, and even chairs and beds to let the house staff know if any of the residents may have left and need assistance. 

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[Right: Interacting with children at the Capital Area Children’s Center]

Our next stop was at their Capital Area Children’s Center, which is a preschool for young children, ages six weeks to five years old, with and without disabilities. The school has 75% of its students without disabilities and 25% with a range of disabilities. Aside from various therapies, which happen in the classroom, the children with disabilities are taught the same things, at the same pace, as the children without disabilities– and it works. When we visited, a 4-year-old girl came up to us and said hello. She started telling us how she was graduating the following day. We later learned she was non-verbal when she began school there! It was absolutely incredible to be able to see the “real world” results from the programs at UCP of CPA.

The last stop on our UCP of CPA journey was at their Assistive Technology/Changing Hands Center. There, we seemingly saw every kind of assistive technology you could possibly think of, and several that you’d never think of, such as a button shaped like a face. There was also a pile of board games that were all in braille. After that, we saw the Changing Hands Center that was a sort of “exchange” for mobility aids and devices. If someone needs a type of device, he or she calls and asks for it. If UCP of CPA has one available, the device gets cleaned, and the person comes to pick it up free of charge. You can also donate old equipment that you no longer need to the Changing Hands Center.

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[Left: Checking out board games in braille]

The striking thing about the work this UCP affiliate is doing is that their passion for what they are doing is apparent and absolutely infectious. It was great to see the positive impact technology can have on the lives of individuals with various disabilities, as well as the positive impact that early intervention and inclusion can have on young children — seen from the bright, smiling faces of the kids enrolled at UCP of CPA’s Children’s Center. Nearly all of the staff we met has a connection with cerebral palsy or other disabilities, be it a family member, friend or loved one. They treated us like we belonged there, and we truly felt welcomed. UCP of CPA is a shining example of the great work UCP affiliates are doing across the United States, in Canada, and Australia!

 

The Camp SMILE Spirit

 
by Megan Maher, UCP’s Special Events Coordinator
 
Special Meaning in Life’s Experience. That’s what Camp SMILE stands for, and strives to achieve. Hosted by UCP of Mobile, Camp SMILE is a residential summer camp for individuals with disabilities (ages 5-50) and their siblings. With adapted rules and specialized equipment, campers not only have the chance to participate in physical activities like kayaking, fishing, swimming, boating, and horseback riding; they also meet others whose abilities and life experiences are similar to their own.
 
Founded in 1972, Camp SMILE has grown exponentially – from originally serving 27 campers for four days in the summer to now serving over 300 campers across four five-day, four-night sessions and two seasonal respite weekends. The camp offers a unique one-to-one camper-to-counselor ratio, which helps campers adjust to life outside their normal routine and helps foster genuine relationships between campers and counselors.
 
My journey with UCP began as a Camp SMILE counselor in 2004. After spending five full summers at camp, I went to college and based my education off my camp experiences. I bounced from special education to psychology, worked at an autism center and on an autism research project, and fueled the search for my future career based upon the inspiration camp had instilled within me across my high school days. Now the Special Events Coordinator for UCP’s national office in Washington, D.C., I journeyed back to my camp family this summer to rediscover the Camp SMILE spirit, and learn what it truly means to everyone involved.
 
The Camp SMILE Spirit for Counselors
 
This was Emily Kendall’s 15th summer as a camper, but her counselor’s first. “We’re friends at school,” her counselor Emma Erwin explained. The pair are students at Baker High School, where Emily would frequently talk to Emma about camp and her summer experiences. “After my grandfather died,” Emma said, “Emily came to me and said: ‘Don’t be sad, because in heaven he’ll get to ride the zipline just like you can at Camp SMILE.’ I knew then I wanted to be a counselor, and waited every year until I was finally 16 and could sign up to volunteer.”
 
 
 
For Mallory Schum, the Camp SMILE spirit is about making her camper have the best week possible. “I like that camp makes us feel equal, like they aren’t the minority.” Schum states the experience is like working for any other summer camp, and then some. “I try to make sure my camper gets the most out of their week, but feel like I might get even more out of it myself.” Her favorite moment? Struggling for hours to get a wheelchair-bound camper up a waterslide, but then getting to see the look on her face when she slid down. Mallory sees the Camp SMILE spirit to be a beautiful thing, stating that: “As long as this place is around, it will continue to give counselors and campers alike a meaningful and life changing summer experience.”
 
A counselor for six years, Mallory intends to go into the field of nursing and continues to volunteer with UCP of Mobile throughout the year. Over a third of all volunteers follow suit by choosing college majors and future careers that relate back to their summer camp experiences.
 
The Camp SMILE Spirit for Campers
 
Waylon Rogers, a camper for virtually his entire life much like Emily, says that camp means “you always have to smile.” Waylon, known for his dance moves and remix to the “Mr. Sun” flagpole song’s chorus, values the friendships that camp has given him. After all, he says, “even when you have to leave, camp is about knowing you can come back next year.” And indeed the campers do come back. As Camp SMILE’s model separates by age, not disability, campers have the opportunity to grow up together and proceed through the different summer sessions as a group.
 
Marcus Williams (pictured here) has been coming to camp for “a long time” he tells me. For Marcus, camp is family. His favorite part of camp are his friends, a group that bring energy (and maybe a little bit of trouble) to the entire camp and are notorious for having the most rambunctious cabin of the week.
 
His message to someone who has never come to Camp SMILE before: “You have to come see it for yourself, cause you’re gonna love it.”
 
 
 
 
 
 
 
The Camp SMILE Spirit for the Community
 
This summer was Matrisza Alvarez’s 21st year at Camp SMILE. This camp journey has taken her from counselor to staff to UCP of Mobile employee, and now, Camp Director.
 
For Matrisza, the Camp SMILE spirit embodies more than just the summer camp experience – generating true community and family benefit. “We are the only residential camp in the greater Mobile area for all disabilities. Camp SMILE encompasses everyone – and means just as much to the families as it does to our campers. Through this program and our respite weekends we strive to provide a safe, loving, and fun environment so that parents can get a break themselves and feel confident that their child is being cared for.”
 
Camp SMILE is also sustained by a strong volunteer force – from teen counselors to dedicated staff who decide to spend their summers to continue building this program. “How many teenagers we have doing great work with us all summer is amazing,” says Alvarez. “Camp is not only a huge service to our campers, but provides a volunteer experience to hundreds of teenagers in the Mobile community each summer.”
 
 
To learn more about Camp SMILE, visit http://www.campsmilemobile.org or contact Camp Director, Matrisza Alvarez at malvarez@ucpmobile.org.

Ms. Wheelchair Michigan 2014 Shares Journey to Parenthood

Are you a person with a disability who has ever wondered whether or not you would one day become a parent? Or are you a parent or caregiver who has ever had the same question regarding your son or daughter? Ms. Wheelchair Michigan 2014, Kelsey Kleimola, recently shared her story with UCP and discussed this very topic. See her story below!


by Kelsey Kleimola, Ms. Wheelchair Michigan 2014

 

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From a very young age, I’d always known I wanted a family.  I fantasized about being a mother, imagining a world in which my wheelchair didn’t exist.  Not because I felt sorry for myself, or because I didn’t think parenting would be a possibility, but because I honestly didn’t think all that often about having a disability, or that it might keep me from my dreams.  To me, having a disability was as much a part of me as breathing– something I’d lived with my entire life.  I’d learned early on that I could either let it define me or let it drive me.

 I was diagnosed with cerebral palsy when I was ten months old.  After being told, throughout many times in life, that I would never be able to do anything, and that any hope for a bright future looked grim, I worked hard to prove my naysayers wrong.  When they said I couldn’t do something, I pushed forward– and I did it.  I attended a public high school, even though I was told I’d never talk.  I was accepted into an amazing college, though I was told that would be an impossibility.  I continued to dream, despite those who were quietly whispering, “You can’t.” Always, though, my heart went back to one thing– wanting to be a mother.

Then an amazing thing happened.  Some might call it miraculous.  Right there, in the middle of my everyday life, I met my husband.  We met in an online chatroom and during the first several weeks of us talking, I was upfront and honest.  “I have cerebral palsy,” I said.  His response? “So what?” It was then that I knew, this was the man God had chosen for me.  On a snowy February day, two years after we’d first met, we got married.

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A month before our second anniversary, we were blessed with a beautiful baby boy.  I’d gone through a normal, healthy pregnancy.  I was elated.  My thoughts rushed back, not for the first time, to the little girl who longed for a family of her own. I was wrapped in a perfect bubble of happiness, knowing no one could burst it. But people tried.  They questioned how I would care for a baby on a daily basis.  What would happen when my son grew older and began to walk?  What if he ran away from me and into a dangerous situation?  What would I do?  How would I cope?

 But do you want to know the truth?  While everyone else was busy worrying, I was busy loving. I reveled in the sweet smell of my baby boy– the fact that I could make him laugh so easily, that I could make him happy and that I was his mommy.  I chose not to live in a world of “what ifs.” Instead, I savored the moments that I knew would pass all too quickly. I focused on what I could do as a parent, instead of the little things that I needed help with.  I could change his diapers, give him baths, feed him and snuggle him.  But most importantly, I wrapped my son in the certain knowledge that I was his mommy, and that was enough for both of us.

That was five years ago.  Since then, we’ve added a gorgeous baby girl to our family.  Neither one of my children have ever questioned why I’m in a wheelchair. This is their normal, and that’s OK.  But when the difficult days and voices creep in, once again whispering, “You can’t,” the sweet laughter of my children reminds me that I did.

 

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Kleimola is from Grand Rapids, MI and currently lives in Ypsilanti, MI with her family. She will compete at the Ms. Wheelchair America 2015 competition in Long Beach, California on August 4 – 10, 2014. Feel free to follow her on Facebook!