BECKWITH News A Newsletter of Beckwith Residential Support Services Fall 2013 Nugent Hall | University Housing College of Applied Health Sciences Sharing the Beckwith Experience by Patricia B. Malik, Ph.D., Director One of my favorite lines from the movie Lilo and Stitch (yes, I still enjoy animated films) states, “Ohana means family — no one gets left behind, and no one is ever forgotten.” This seems to fit into this year’s theme where we are focusing on the Beckwith “family” both literally and figuratively. This family that we call Beckwith looks different each year; however, each person, whether resident or staff, is supported — not left behind and surely not forgotten. It is a pleasure to be able to share these family stories with you. One of our Beckwith family members, Philip Edgerley, passed away this spring. I know that reading his sister Rachel’s article about what it meant to share the Beckwith experience with Phil while they were both on campus will give you a wonderful idea of what this community called Beckwith is all about. In addition you will meet the Scott sisters, Kelly and Michelle, who, prior to graduating, were an integral part of the Beckwith family. They have experienced new life adventures, but like the quote above states, “are never forgotten” and still maintain contact with their Beckwith family. This was a year of firsts within the Beckwith program, including eleven first-year residents (yes, you read that correctly — eleven!); the expansion of the first floor of Nugent Hall to accommodate 26 Beckwith supported residents; and the awarding of the Paralyzed Veterans of America (PVA) Barrier-Free America Award to DRES/BRSS and University Housing at PVA’s 2012 Gala. This was the first time a non-architectural entity was given this award. Other highlights from the 2012-2013 year include: • The establishment of a Power Soccer RSO by Meridith Bradford and Alexis Wernsing. • Phil Mungai and Hugo Trevino went on the University Housing sponsored Civil Rights’ Pilgrimage trip over Spring Break. • First year resident, Dan Escalona, was hired as a staff sports reporter for the Daily Illini. • Ani Hunt and David Kirby were accepted into the University of Illinois School of Social Work to begin their graduate degrees in the fall. • Mark McCarthy and Katie Montgomery are transitioning into other residential environments in the fall. • Ani Hunt, David Kirby, John Burton, and Ben Fultz graduated from the University of Illinois. • Alexis Wernsing, David Kirby, and Mark McCarthy received the Chez Family Foundation Scholarships. • Kathleen Downes received the Bill Stewart Memorial Award for her demonstrated spirit, courage, and concern for others. • Erik Jenkins was the 2013 Matthew A. Odelius Award winner for his leadership in advancing involvement of students with disabilities in all aspects of academic and co-curricular life. • Ji Hae Lee, an Illinois and Beckwith alumna, was the guest speaker for the November Disability Awareness program sponsored by BRSS and attended by over 200 Illinois students, faculty, and staff. And as in any family, there need to be times of fun and enjoyment. Our disability advocates, Megan Pudela (Schmidt) and Maggie Dhom, helped to facilitate numerous programs from the traditional December Reading Day ice skating program to painting, cooking, an Oscar Party, and a “sitting on the bench” party. Sometimes, like traditional families, there are many moments that are not momentous but that add a feeling of belonging and caring. It is my hope that this year’s 2012 – 2013 family will remember all of the wonderful moments that truly make being a part of the Beckwith family unique and special. 2 Cycle of Life by Brad Hedrick, Ph.D., Director of DRES With preparations for the 2013-14 academic year well underway, I always enjoy the opportunity I am afforded each summer to read the latest edition of Beckwith News. As I turn the pages, I am reminded of the fear and trepidation experienced by incoming residents and their parents as they question the viability of living independent of family support, while diving into the fast and deep academic waters of one of the nation’s top public universities. But soon, the stories begin to take a positive turn. Anxiety turns to confidence as the students begin to successfully manage their personal assistant needs. The social void of friends left behind is filled with the emergence of new relationships. The students speak about the transformative social learning that naturally occurs as a result of their emersion in a residential context with peers with similar abilities and needs. Finally, the newsletter concludes with the stories of our older students. As graduation approaches, the maturation that has occurred is self-evident, as the students begin to share their visions of viable and vibrant career paths, and describe for themselves a self-determined future that had been unimaginable prior to their arrival at Nugent Hall. Through their stories, the Beckwith Residential Support Services cycle of life is again revealed and I — like all DRES and Beckwith staff — experience the pride of knowing that these extraordinary success stories are only made possible by the unique facilities and services of the BRSS program nested in the state-of-the-art confines of Nugent Hall. 2012-13 new residents with mentors and staff. 3 A New Normal A Mother and Daughter Share Thoughts on Beckwith by Ani and Sherri Hunt Mom, You’ve Been Replaced by Ani Hunt When I embarked on this journey three years ago, I didn’t know what to expect. I had been away from home without my family only once, having spent two nights at an Outdoor Education program in elementary school. The idea of living two and one-half hours away from home was completely terrifying. The only person who cared for me was my mom, and now suddenly I was going to be thrust into a world filled with strangers who would be responsible for helping me with all of my activities of daily living. Imagine, if you will, meeting someone for the first time and thinking, “This person is about to shower me and I don’t even know a thing about her.” I remember thinking, “How will I fill this awkward silence?” So I simply said, “What’s the appropriate conversation for a time like this?” We both laughed and that really broke the ice. Now having ten different personal assistants (PA) helping me is completely second nature. Mom, you’ve been replaced. Living at Nugent Hall has been a wonderful experience. I have to admit that it is challenging at times. It is a full-time job managing a staff of ten PAs and making sure that everything runs smoothly. There will inevitably be bumps along the way, but I have learned how to overcome obstacles by developing the necessary tools and problem-solving skills needed to handle any difficult situation that may arise effectively. I have had the amazing opportunity of working with some wonderful people and forging long-lasting friendships. Before coming to Illinois, all of my friends were able-bodied. I love them dearly but there is something to be said about being surrounded by people who “get me.” This is a place where the ability to separate your toes if you have cerebral palsy means you’re high functioning and the rest of us stare in awe. One of the best things about being a part of the Beckwith community is having the ability to be completely open and honest with each other without ever feeling embarrassed or ashamed. We are always there for each other to offer emotional support when needed or a bite of a cookie. This community is, for the most part, a judgment-free zone. I have been extremely fortunate with regard to the outstanding professors at Illinois. They have been beyond accommodating, as well as the staff at the Division of Disability Resources and Educational Services. For all the changes that have occurred in my life over the past three years, there is still one thing that will never change: I still hate having breakfast for dinner. I graduated with a BS in psychology and began my Master’s in Social Work this summer. I am thankful every day that I made the right decision to come to Illinois, where the support services made it possible for me to achieve my goals and pursue new ones. 4 How the Heck Will We Do This? by Sherri Hunt When my daughter transferred to Illinois three years ago from the College of DuPage, I wondered, “How will I leave her there? Who will do all of the things I did for so long? What if she falls out of bed, drives off a staircase, or is left in bed?” These questions and others kept me up at night prior to leaving home. How the heck will we do this? Well, I am happy to say, we did. No matter how painful the separation was at first, in the back of my mind I knew that this had to happen in order for Ani to obtain her independence and experience life away from home. We were together for so long that we were at times considered one. Now my bright light has graduated and was accepted to graduate school, where she will earn her Master’s in Social Work. Her father and I could not be filled with more pride for her success and determination to fulfill her dreams. Ani was surrounded by great friends at home and this continued with the friends she made living at Beckwith. A huge debt of gratitude goes out to the numerous PAs whom Ani has hired during this time. These girls have been amazing. They have been there to help with personal needs and some have become good friends. I want them to know I truly appreciate how they treated my daughter and I wish them the best of luck in the future. I can’t say this was an easy process. There were lots of challenges in the beginning, but everything fell into place in time. I am thankful to other parents who helped make the transition easier. A big shout out to the Urcina Girls! Her father and I could not be filled with more pride for her success and determination to fulfill her dreams. The Hunt family. 5 What Can We Learn? by Rachel Edgerley Personal Assistant 2007-2008 My family is blessed to have a close relationship with one another, and we enjoy spending as much time as possible together. One special bond that my brother, Philip, and I shared is the Beckwith and personal assistant bond. I worked at Beckwith for a year before my brother was a resident. It was a fantastic experience with an incredible group of individuals, and it quickly became clear to me how perfect this living environment would be for my brother. It was like a tight-knit family away from home. I was ecstatic when he was accepted at the U of I and began making plans to move into Beckwith. I knew he would make life-long friends with students he met in and through Beckwith, gain important information, and have the necessary experiences to become an independent individual in charge of his own personal care. Philip indeed obtained a wealth of knowledge that he later used living at St. John’s Catholic Newman Center. Prior to Philip moving to Newman Center as a junior, I was a Resident Advisor there for two years. It was a pleasure to take information and knowledge that I gained from Philip and his peers at Beckwith to collaborate with Newman staff and consider ways of making the church and Newman more accessible to a wider population. Philip lived there for three years, until he passed away this spring. Now more than ever, I cherish those joint Beckwith memories and experiences that I had with Philip. As my dad will commonly say, “Now what can we learn from this experience?” As Philip learned immense knowledge from the staff and students at Beckwith, I also gained valuable life lessons from experiences with Beckwith and from my dear brother. I recognize the importance of adding humor to daily life. I continue to grow in my understanding of the value and gift of each and every life. I strive to be flexible and patient with my time and agenda. I have learned to take pride in allowing myself to depend on help from others. I have witnessed the powerful benefits and freedom that comes with taking charge of and directing one’s own life and self-care. The last of these lessons has led me to a meaningful career in occupational therapy and guides my daily interactions. Each of these life lessons has not been taught to me by lecture or sermon, but rather through daily connections with ordinary people making the most of the gifts they have been given. Beckwith, its students, and its staff provide an incredible opportunity to experience a different and beautiful side of life. Each individual that enters the Beckwith family is provided with countless opportunities to grow in their understanding of the glory of friendship, life, and compassion. Their community and support system is one that can only be found in a tight-knit family, and this is exactly what Philip and I found throughout our Beckwith experience – an extension of our family. Philip Edgerley dancing during the 2009 semi-formal with a Garner Hall resident. 6 The Importance of Preparation by Sam Williams I remember stepping into my room at Beckwith in August 2003 and thinking, “I did it!” Indeed I had. I had completed my K-12 education as a mainstreamed student, graduated with honors, became a nationally-renowned Boccia player, and took part in public speaking. I perceived acceptance to Illinois as a culmination of events rather than as something that would impact my quality of life, particularly my employment prospects. From age 14 to 19, my focus was on getting my body in shape and my augmentative communication system useable. Otherwise, I would not have gone to college, and my quality of life would have suffered. I thought I only had time for school and therapy. I never considered getting a job or volunteering as my peers without disabilities did. I didn’t realize the impact of that mindset until late in my college years. My approach was, “Graduate and get a job, maybe throw in a couple of Paralympics.” Ok, those are both great goals, though academics weren’t an issue and graduating was relatively straightforward. I felt entitled to employment. Interestingly, I had to be accepted into a public university, but I thought the private sector had a duty to provide me with employment. I quickly learned that employment was not contingent upon academic success. This realization was magnified when some of my peers without disabilities but with experience couldn’t find jobs. To say that I wasn’t competitive was an understatement. The solution? Attend graduate school and earn a Master of Public Health (MPH) degree. In hindsight, it should have been the plan all along either to work first or to work and attend school part time. Earning the MPH completed the molding of my academic and professional skills for employment. However, without experience it still did not lead directly to employment. My only option was to create my own experience. What unique vocational skill set did I possess? The answer was my expertise with Augmentative and Alternative Communication (AAC) systems. As an AAC user, I effectively integrate multiple devices. My education fostered the social theories, credentials, business skills, and marketing tools needed to form an AAC Peer Mentoring Program for youth users. Through networking, a dream became a reality. About a year ago, the local Easter Seals welcomed me as a consultant. Recently, I began consulting for school districts and seeing private clients. As an entrepreneur, I want to move faster. After all, I’m raising a strapping five-year-old, Patrick, and a sparkling four-year-old, Caroline. Unfortunately, I need to balance potential growth given restrictions related to Social Security income (SSI), insurance, and managing my state personal care. Lessons can always be learned. The question is, when do you begin to learn them? At 14 or 24? My advice to students considering college, especially those with severe disabilities, is to prepare and get involved! Before graduating from high school, volunteer, work, or complete an internship. Learn about and use State personal care hours and master public transportation. Possibly include these skills into your IEP (Individualized Education Program). Consider college as work experience, not just “school,” and have an honest discussion with the Department of Human Services counselor about employment, care hours, SSI, and so on. Get involved in service organizations and take advantage of opportunities in your major. Research your chosen profession, and understand the intricacies. Consider graduate school, but be employable by the time you graduate. Finally, understand that nobody is entitled to employment, but those who prepare are rewarded. Although it seems unfair, when you have a disability you just have to prepare more. In the end, the additional effort will lead to great opportunities. “Understand that nobody is entitled to employment, but those who prepare are rewarded.” 7 From Near or Far, We Come Together Paige, Pat and Katherine. Abby, Kathleen, Mer, Maggie and Maddi about to enjoy the pool party at CRCE. Ani, Kushal, Maggie, Megan and David checking out the new benches. Hallway races, with Kathleen pulling away from Ben, and Rachel as the judge. Ji Hae and Amber after the Disability Awareness program. Hugo and Alexis hanging out. 8 David painting a masterpiece. Students participating in a wheelchair wash where proceeds went to 5 baskets donated to needy families for Thanksgiving. John cutting peppers for salsa with adaptive knife. Ben, with Maggie and Meg catching a ride at the UI Ice Arena. Mer having a blast making brownies. The Beckwith family enjoying the PA appreciation ice cream social. 9 A Home Away From Home by Kelly Scott Personal Assistant, Class of 2007 It’s hard to believe it has been more than five years since I spent my days running around Beckwith Hall. I graduated in December 2007, and have yet to forget the friends and memories I made during my time working as a personal assistant (PA). I started working there my freshman year and quickly became a Beckwith regular, picking up lunch and floater shifts when I could. I also was there early to help with morning routines and stayed late assisting students to bed. During my junior year I bartered my PA time, working 18 hours in exchange for room and board, and moved into Beckwith Hall as a live-in PA. Beckwith, to me, was a second home. Not only did I make friends, many of whom I am still in touch with today, but I also was lucky enough that family and friends from my hometown of Dunlap, Illinois, also worked there. My sister Michelle, two years my junior, started working at Beckwith during her freshman year, as did my childhood girlfriends Lacie and Becky. I loved working in the same place as my sister. It meant getting to see more of her amidst our busy schedules. It also meant more mutual friends and stories to share. We worked during the days of the ancient seventies-style building on John Street, when legends like Shannon O’Brien, Lucas McKeever, Carmen Sutherland, Kerry the chef, Jonathan Ko, and Shaun Deneen roamed the halls. I hear Beckwith has had a facelift since then, outfitted with all the newest and greatest gadgets in a brand new building and location. I hope to visit it one of these days. Since working at Beckwith and graduating from Illinois, I’ve moved on to other chapters of my life. I earned a Master of Social Work and a Master of Business Administration at Washington University in St. Louis, and currently live and work in Rwanda, East Africa. Living in Rwanda has made me thankful for the Americans with Disabilities Act policies and non-discrimination laws we have today in the United States. Working at Beckwith shaped my understanding of disability and left me with more friends, patience, and respect for others. I will forever feel grateful for the time I spent at Beckwith Hall. “I loved working in the same place as my sister. It meant getting to see more of her amidst our busy schedules. It also meant more mutual friends and stories to share.” Hometown friends stay connected at Illinois. Lacie Durand, Becky Wallon (Bargfrede), Michelle and Kelly Scott. 10 My Second Family by Michelle Scott Personal Assistant, Class of 2009 When my sister Kelly first told me about her job at Beckwith, it sounded fantastic! She really enjoyed the “work,” and made friends at the same time. I was a freshman, new to campus, and was definitely on the look-out for a job. In addition, I was thinking about applying to nursing school and thought that this job might be a good opportunity. I definitely could not pass this up. I interviewed successfully and started as a floater and personal assistant. Meeting the residents and making new friends was a fantastic experience in and of itself. Kelly was right – time flies at work when you sincerely enjoy it. I immediately felt at home in this safe and friendly atmosphere. In no time at all, the residents I worked with became close friends. Many of the Beckwith residents taught me a lot about themselves. Having a support system and purpose outside of academia during that first year of college facilitated my transition immensely. Soon, my experiences at Beckwith cemented my decision to pursue nursing. I have come a long way since my days at Beckwith, where I gained invaluable insight. As I continue my education as a nurse anesthetist, I am often educated on the nervous system, the spinal cord, and neuromuscular pathophysiology. I am grateful that my first understanding and involvement came from such a positive experience at Beckwith. I was blessed to have gotten to work with my sister and am forever indebted to her for suggesting I get involved. I truly feel that she wasn’t the only “family” I had at Beckwith. Not only did I get the opportunity to share the experience with her, but I truly gained another family while doing so. “Having a support system and purpose outside of academia during that first year of college facilitated my transition immensely. Soon, my experiences at Beckwith cemented my decision to pursue nursing.” Kelly and Michelle at Becky’s wedding 11 Eight Months Later by Daniel Escalona On a warm afternoon after my final class of my freshman year, I decided to take a walk on the quad. I went up and down the quad crossing between the campus buildings as the spring sun splashed upon my cheeks and the soft breeze pushed my hair side to side. It was at that moment, with my fellow peers studying in the grass beside me, that I realized that I belonged at Illinois. It was an epiphany that was surreal as well as special, given that I would soon culminate eight of the most memorable months of my life. As I drove with my parents and sister last August to campus, my mind was consumed with worries and anxieties about everything from PAs to making friends to getting involved on campus. I fretted about living in the Beckwith program, having to trust people I had never met to help me with my activities of daily living and whether I’d make friends or not. While these anxieties were constant, I still kept in mind that my parents always pushed me in life to strive and do all that I could to keep my disability from impacting my future aspirations. The constant support from my family to achieve my very best in every aspect of my life was always in the back of my mind, which I knew would ultimately ensure my success on campus. With that support at my back, I knew somewhere in my head that I would have the fortitude to thrive academically, socially and professionally throughout my Illinois experience. It wasn’t enough for me to simply be happy to just be attending Illinois; I wanted to challenge myself academically. It wasn’t enough for me to simply be happy to just be a part of the Beckwith program; I wanted to build lifelong friendships with my fellow residents and build skills to live a life of independence as I enter the real world. Eight months later, I see myself as a totally different person than back in August. I am more confident and willing to put myself in situations outside my comfort zone, such as my choice to join the Daily Illini as a staff reporter. I am more self-confident in advocating for my needs to my PAs, professors and even total strangers on the street than I ever thought possible. I have built relationships with my fellow residents and PAs that I never imagined that I could eight months ago, and I have challenged myself academically more than I did in high school. Eight months later, I’m proud to say that Illinois and the Beckwith program changed me in ways I can’t even fathom. I truly appreciate all the personal growth I have undergone these eight months. I know that I have at the very least six more semesters for even further growth, and know that my family will be there for every trip down I-57 and the friends I have met throughout these eight months will always be just down the hallway. It was at that moment, with my fellow peers studying in the grass beside me, that I realized that I belonged at Illinois. Daniel checking out the University of Illinois Ice Arena. 12 Obstacles and Opportunities by Erik Jenkins 2013 Matthew A. Odelius Award Recipient As a second-year student in the Beckwith Residential Support Services (BRSS) program, I am grateful for the opportunity to be a leader in advancing the involvement of students with disabilities on campus. This year, while still maintaining academic excellence, I moved beyond the classroom to advocate for students with disabilities. This past summer, I was one of the individuals chosen to represent the University of Illinois at the Smithsonian Folklife Festival in Washington, D.C. This experience allowed me to present the BRSS program to festival patrons and alumni. It was a privilege to showcase the innovative ways that Illinois has impacted the world. Back on campus, I am proud to have been a mentor for new students in the Beckwith program. From my own freshman experience, I understood that the challenges of living with a disability sometimes overshadowed the academic side of college. For this reason, I wanted to impart my knowledge of study skills, course work, and time management. I knew all the students had the potential to succeed in college and I’m glad to be a part of their journey. In addition to Beckwith, LAS Leaders allowed me to gain leadership experience as an ambassador for the College of LAS. Since being elected the Vice President of Publicity, I was charged with coordinating LAS Leaders’ participation at Quad Day. This allowed me to display my abilities to the entire campus. I was honored to receive this year’s Matthew A. Odelius Award, celebrating the accomplishments of a former Beckwith resident, which is awarded to a student with a physical disability residing at Beckwith who demonstrates leadership in student organizations while balancing academics and other commitments. To be chosen for this award in such great company is humbling. Machiavelli said, “[leaders] are simply those who understand that there is little difference between obstacle and opportunity and are able to turn both to their advantage.” Receiving the Odelius Award means that I have been able to achieve this, and for that I am truly thankful. Erik receiving the Matthew A. Odelius Award from Paige Lewis. 13 Forever Connected by Maggie Dhom Disability Advocate When this year began I knew it would go by quickly, so I tried to make a conscious effort to enjoy every minute. But even with this mindset, I cannot believe the year came to an end. I remember being so excited to meet everyone in August. Though I had no idea what the year would bring, I was confident I would enjoy my experience. Now at the end of these two semesters, I feel truly blessed to have shared it with so many wonderful people. When Meg and I began orientation last August, I was drawn to the fact that students receiving Beckwith services were traveling from New York, New Jersey, throughout the Midwest, and from all over the Chicagoland area - all to Champaign to gain an education at the University of Illinois. Because of this, we coined the slogan, “From Near or Far We Come Together,” and made this the theme of our first bulletin board in the hallway. I am a strong believer that every person you encounter in life, whether you interact with them daily or once, is part of your life for a reason. They are placed in your world to help mold you into who you are meant to be. The people around us strengthen, support, question, and challenge us to continue developing into better versions of ourselves. I found this especially true living in the tight knit Beckwith community. It has been truly amazing to share this year with so many extraordinary individuals. When I accepted the disability advocate position last summer, I was thrilled to have the opportunity to live and work at Beckwith, but I had no idea what a phenomenal experience it would be. Thank you for opening this community to me and sharing laughs, hugs, jokes, tears, food, good conversation, and so many memories. I will continue to feel connected to the Beckwith family for years to come. Maggie and Phil. 14 Kismet! by Megan Pudela (Schmidt) Disability Advocate Looking back on this year, I have the overwhelming feeling that it was meant to be, that the people around me were a part of this time in my life for a reason. The Beckwith community is undoubtedly a unique and diverse one. We come from different states and backgrounds, with our own abilities and strengths, having the unique opportunity to survive and thrive a year of college together. While we did not pick each other, we eat and study together, we hold each other accountable, and at the end of the day, we are each other’s home base during a complicated time in life. There is an African proverb that says, “If you want to go quickly, go alone. If you want to go far, go together.” I have come far here, and I know this is a shared experience among many who work and live at Beckwith. Coming to Beckwith this year meant leaving a comfort zone that I had cultivated for three years. Saying goodbye to my cozy apartment and my job where co-workers felt more like family was anything but easy. Setting forth as a Disability Advocate at Beckwith and being a graduate student at Illinois was unchartered territory, and I was unsure of my success. Initially, I underestimated how much support I would be receiving from the administrative team in developing my professional self. Focusing on my strengths, I was able to create attainable goals and be supervised on my progress, receive valuable feedback, and be challenged to try new ways of problem solving. Throughout the highs and lows of this year I have never felt alone or without skilled help and advice. Studying to become a social worker, I have learned that one of the best ways to empower your client is to start from a strength-based perspective. Leveraging individuals’ strengths to make critical improvements in their ability to be successful is precisely what has happened to me at Beckwith this year. The work I have done with residents and staff has taught me so much about myself, and why I am passionate about social work. The end of my time in Beckwith means the end of a pivotal point in my personal and professional life. I’m beginning something so much greater, the next big adventure. Maggie and Megan, disability advocates at Beckwith during the 2012-2013 academic year. 15 Beckwith Residential Support Services Timothy J. Nugent Hall 207 East Gregory Drive, MC-540 Champaign, Illinois 61820 Non-Profit Org. U.S. Postage PAID Permit No. 75 Champaign, IL 61820 “Making important choices... Leading empowered lives.” www.disability.illinois.edu/beckwith