Abilitations Girls on the Run

Abilitations Girls on The Run PUBHLTH 698P Leslie Quackenbush, LCSW 04/30/14 "Before Girls on the Run, I would always sit alone at school because I thought I was different and the other kids made fun of the way I walk and how I hold my hand up sometimes. Now I know that it doesn't matter that I'm different, and I don't want to sit alone anymore." –Abilitations GOTR Participant, age 10

Introduction: Take a moment to think back to your childhood, to the wonder and excitement of those days, and how it seemed like nothing could get in the way of your never-ending quest to have fun. Sure, you had to go to school, but your friends were there, and you got to play outside and be silly with them. There were probably things that happened in your childhood that were not-so-great as well, but those things seem less prominent now than the memories of your carefree childhood. Now take a moment and think of how your childhood would have been different if you were born with Cerebral Palsy, or Down syndrome, or any of a myriad list of physical and cognitive impairments that can alter the lives of our children. Would you have had as much fun? Would you have had as many friends? Would you have overwhelmingly positive memories of childhood? Or would you clearly recall being left out, bullied, teased, and excluded from the activities that are such a vital part of being a kid? Chances are, it would be the latter. Children with disabilities often have fewer meaningful friendships, exhibit fewer age-appropriate social behaviors, and are at a significantly higher risk of being bullied or socially excluded when compared with typically developing peers (Lindsay, 2011). The World Health Organization emphasizes the importance of children with special needs participating in a full range of developmentally appropriate social, recreational, and skill-building activities in order to improve overall quality of life (WHO, 2012). However, as a result of societal barriers and the tendency of the general public to be uncomfortable with this particular population, children and adolescents with special needs are less likely to engage in organized programs for physical activity or social interaction (Rimmer, 2007). As a result of barriers to participation in these programs, there is a significantly higher rate of obesity among young people with disabilities compared with their typically developing peers (Rimmer, 2007). We all know that exercise is important in improving and maintaining our physical health, but the camaraderie that can come along with participation in organized sports or other physical activities is also of great importance. In attempting to research the benefits of group participation in physical activities for children with special needs or disabilities, it became rather clear that this is an area that has not received the amount of attention it deserves. Many articles point to physical therapy and individual exercises to improve physical fitness, mobility, and overall level of function, but few describe community-based interventions to address both physical activity and breaking down the barriers of social interaction in this population. Thus, the idea for this practicum project began to take shape. My previous clinical supervisor has a daughter who is in her twenties, who happens to have a developmental disability. We met over coffee to catch up one day, and ended up discussing the lack of organized activities for people in her daughter’s situation. Outside of the Special Olympics, there just aren’t that many options. Driving home from this meeting, my head was still with my supervisor and her daughter. There had to be a way to share the benefits of team sports with this population, in a way that put less emphasis on competition and more on empowerment, confidence, accomplishments, and generally having a good time. Having been a long-time volunteer coach with Girls on the Run (GOTR) (www.gotrtriangle.org), I knew it would be the perfect vehicle for this sort of idea. I also knew, however, that GOTR is a nationwide program with an established curriculum that must be utilized as written in its implementation. I stopped into the GOTR office one day to chat with the Executive Director, and decided to pitch this idea to her. Much to my surprise, she was ecstatic about it, and immediately put me in contact with the owners of a local physical/occupational/speech/music therapy agency for children. I contacted the owners of Abilitations Children’s Therapy and Wellness Center (Abilitations) to discuss this idea, and they were immediately on board. These women are physical therapists who are passionate about providing children with special needs access to typical activities of childhood, and are truly invested in this goal. We met up, reviewed the curriculum, shared our big ideas, and the Abilitations GOTR team was born. Methods: Ideas are but a tiny portion of creating a public health program, and this “meeting of the minds” was just the beginning of getting this thing off the ground. Goals and plans were established regarding how to put our ideas into motion, and how this program would play out over the course of the season. My specific goal for this practicum was to develop and implement a targeted team through GOTR to address the specific needs of girls with developmental disabilities, providing a pathway to improved confidence and self-esteem while developing interest in physical exercise. I spoke with the Program Director, who agreed to supervise the practicum portion of this project. Our initial goal was to establish contact with GOTR International and determine whether this was feasible, and the timeline associated with a plan of this nature. Dates and times were established to check in throughout the season, as well as scheduled “office days,” during which I was present in the GOTR office for the duration of the day, observing, assisting, and learning about the inner-workings of the agency. It is a goal of mine to operate a community program aimed at providing nutritional education, physical activities, and behavioral health services to children, so these days observing the intricacies of running a non-profit were very important. Also of interest to me was the planning and completion of a major community event to benefit GOTR. At the conclusion of each season, a community 5k is put on by GOTR, which has grown into a major event over the years. This season, there were over 800 girls from area teams, and a total of 2,000 runners. As the season progressed, I became more involved in the millions of tiny details that come together to make such an event a success (including the pure manual labor of setting up and tearing down such a scene). Practices were held twice weekly for twelve weeks, following the GOTR curriculum. Collaborating with the physical therapists from Abilitations, plans were made to modify various activities that had the potential to be difficult to our girls based on their levels of function. As our team required more individual attention than most teams, I recruited one more coach, bringing us to four coaches for six participants. This ratio ensured that one coach was always able to push the wheelchair of one of our girls, and two coaches were able to walk closely with our two participants who used walkers to assist their gait. The fourth coach was able to monitor the team and provide “lap counters” and encouragement during the walk/run portion of practices. In discussion of the physical limitations of our group of girls, it was decided that we should establish a shorter length course for their final race, as the majority of our team would have been overly fatigued attempting to complete a 5k (3.1 miles). We decided on a one-mile length, and determined a course that was a part of the main 5k course, starting and finishing with the rest of the runners.

Results/Outcomes: As mentioned above, GOTR is a national program with a well-established curriculum. The program is provided to teams of girls in third through fifth grade, utilizing a fun, experience-based curriculum that creatively integrates running. This program takes place over a 12-week period, and culminates in the completion of a 5k in order to give the girls a sense of tangible achievements and teach the importance of setting goals in life. The curriculum includes 24 lessons, which aim to teach three major topics broken down into smaller lessons with fun activities along the way. The three main parts of the curriculum include understanding ourselves, valuing relationships and teamwork, and understanding how we connect with and shape the world at large. The running and physical activities incorporated into the curriculum are merely a medium to present these lessons. The vision statement of GOTR really says it all, and speaks to why this program was so perfect for adaptation to the special needs population: We envision a world where every girl knows and activates her limitless potential and is free to boldly pursue her dreams (gotrtriangle.org). In order to get this team up and running, the next step was to contact GOTR International and request permission to make slight modifications to the curriculum activities in order to best meet the needs of our population of girls. There was a very in- depth conference call in which the intricacies of this process were discussed, and the go- ahead was given to pilot this program with a small group of girls. The physical therapists from Abilitations handpicked a group of six girls with whom to pilot this program, with varying degrees of physical and cognitive limitations. Their diagnoses included Down syndrome, Cerebral Palsy, Ataxia, and neuromuscular disorders. As was briefly touched upon in the previous section, our team included two girls who utilized walkers to steady their gait, and one girl who used a wheelchair. These physical limitations did nothing to hamper their enthusiasm or willingness to give their very best effort at every single practice. In an effort to familiarize myself with the challenges faced by this population, I did some research on their various diagnoses. Having a cousin with Down syndrome and a family friend with Cerebral Palsy, I was fairly familiar with these diagnoses. I came across an article that utilized feedback from young people with Cerebral Palsy to develop strategies to improve social inclusion for children with disabilities. The young people surveyed provided the following suggestions: creating an awareness and understanding of the disability by being more open with peers; acknowledging and speaking out against bullying; and developing a strong peer network to help build self-confidence (Lindsay, 2011). These suggestions fall perfectly in line with the mission and vision of GOTR, as well as the overarching goal of creating this targeted team. Articles on young people with Down syndrome all suggest that organized physical activity is important in improving cardiovascular health in order to improve overall quality of life in this population (Gonzalez-Aguero, 2010). A diagnosis that I was completely unfamiliar with was that of Ataxia. Typical symptoms include increased step width, variable foot placement, irregular foot trajectories, unstable walking path with a high risk of falling, uncoordinated movement of extremities, difficulty with eye movements, and dysarthria – an impairment with articulation of speech resulting in slow, slurred speech (Ilg, 2009). Our participant who suffers from this disorder is quite possibly the sweetest, most endearing person I have ever met. Learning about her disorder was devastating to me, as I discovered that it is a degenerative disease affecting the cerebellum, with no known cure (Ilg, 2009). The only positive bit of information I uncovered regarding this illness is that regular exercise and physical therapy can actually result in a regaining of function, which is encouraging in an illness that typically produces gradual loss of function (Ilg, 2010). My personal hope is that this sweet girl receives as much physical therapy and exercise as possible in order to slow the progression of this horrible disorder. The world is a better place for having her in it. Throughout my review of the literature, there was an ongoing theme of the need for physical activity and exercise in young people with developmental and intellectual disabilities, but there was an overall lack of focus on instilling positive values, strong self- image, assertiveness, and confidence in this population. The fact that these girls are facing so many seemingly insurmountable physical and cognitive limitations just further illustrates their need to be emotionally strong and confident in order to overcome the harsh realities that life may have in store for them. GOTR aims to do just this, instilling confidence through the experience of major accomplishments, in hopes of establishing a lifetime of appreciation for physical and emotional health. The season went better than any of us could have ever anticipated. These girls were ready and willing to engage in these activities, and were like sponges soaking up every bit of information we gave them. They demonstrated understanding of the topics at hand, and were able to incorporate many of the lessons into their own lives, often sharing experiences of responding to a bully or utilizing positive self-talk to improve their outlook in various situations. We fought our way through an abnormally cold North Carolina winter, and rejoiced when daylight savings time returned and we could finally practice in the sunshine. The weather improved toward the end of the season, and we finished in spectacular fashion. Our “Miracle Mile” was held on an absolutely perfect Carolina-blue-sky day, where our girls had the opportunity to show off their accomplishments in front of a huge hometown crowd. Never have I felt more proud to be a part of something than I did in that exact moment. Those girls stole the show, and crossed the finish line to the sounds of a deafening roar of cheers from the spectators. As a bit of a surprise, the original founder of GOTR, Molly Barker, was in attendance at our event (I strongly encourage doing a Google search on Molly; she is a remarkable person). Randomly, she happened to walk by as our girls were gathering before the race. She stopped to talk to the girls and told us what an inspiration we were. After the race, she spoke of being brought to tears watching these girls cross the finish line. She wasn’t the only one. After the race, we received an email from a participant’s mom. I think this qualifies as the best thing that happened during this project – not the act of receiving the email, but the content of the message, and the feelings it reflects. For your enjoyment: Dear GOTR Coaches,

I just wanted to share with you the wonderful experience we had at the race. As we started the race, my daughter was over whelmed with all the wonderful cheers from the crowd. As we continued the race the people on the sidelines yelled out wonderful and inspiring cheers for my daughter which she truly enjoyed. People were taking pictures of her as she continued, so we now think she is famous. I was truly touched when I looked over and saw a man cheering for her with tears running down his face. I can't tell you how much this touched my heart. At this time I realized that being involved in GOTR is even more than I ever thought it would be. Not only is this a wonderful opportunity for my daughter to help her build her confidence and to know that she can always reach for new goals, it is also showing others that these special girls just want to be like everyone else and that they can achieve so much more in life if given the opportunity. I just want to thank you for all that you do and have done for my daughter. Thank you for believing in her. You are very special people in our lives and we want you to know how much we appreciate and value you.

Lessons Learned: Upon completion of a season that was a whirlwind of emotions and activity, I was presented with the opportunity to debrief on the challenges and successes with the VP of Programming and Evaluation at GOTR International. We discussed the overwhelming success of this program, and couldn’t help but wonder about the future and how many lives can be touched by spreading this type of targeted team to other chapters of GOTR. One of the main points of this discussion was to remember to not make this program one of exclusion. The reason this particular team worked so well was that these girls were selected from a program they were all already a part of, rather than being singled out for being “different.” Most GOTR programs are held at schools or after-school programs, and are designed to be fully inclusive. If a girl with special needs is interested in joining her local team, she should absolutely do that. However, if we want to continue developing teams of the Abilitations sort, we would need to do so through other pre-established groups such as a children’s therapy center or a family support group of some sort. The take-away from this discussion was that this is definitely something that can be implemented in other locations, but would take careful consideration and planning, including having coaches who are well-versed in working with the particular population served. What an exciting thought, that my work could serve as a model to impact girls across the country… It is mind-blowing, quite frankly. The response I have received from our local GOTR chapter, GOTR International, our girls, their parents, and the community in general has opened my eyes to just how important this type of program is for this population. I gained so much experience over the course of this semester, and am eager to apply all of these things to my future career in the public health sector. I will definitely carry this experience with me and utilize the lessons learned in the implementation of my own public health program upon completion of my coursework. If I were to attempt to describe all of the lessons I learned over the course of this semester, I would never be able to submit this paper. Nearly every practice ended with me crying in my car, thinking about how incredible these girls are and wondering what I did to deserve the opportunity to watch them grow and gain confidence in themselves over the course of twelve short weeks. I set out to teach these girls various lessons, to empower them to stand up for themselves, and to always aim high in life. Along the way, I realized that although I was accomplishing these things, I was the one doing the majority of the learning. I learned the heartbreak that young girls face when they are “different” from their peers. I learned the power of a group of girls who have shared this heartbreak and are comfortable enough with one another to discuss and work through it. I learned that strength and courage come in small, adorable packages. I learned that perseverance is a quality we are never too young to exemplify. I learned that the best hugs are sweaty ones, when a major goal has been accomplished and there’s nothing left to do but celebrate. Above all, I learned the impact that one tiny fraction of a program can have on an entire community. I, too, saw the tears in the eyes of the spectators as these girls – walkers, wheelchairs, leg braces and all – powered their way to the finish line. I wiped away my own tears as I placed medals around their necks and basked in the incredible glow of rising above our limitations. We all have them, after all. The difference between our limitations and those faced by these girls is that we tend to place them on ourselves, and they have spent their entire short lives trying to – literally – outrun them. On April 12, 2014, they did just that, and ran directly into the hearts of everyone who witnessed their “Miracle Mile”. References: Fragala-Pinkham, M. A., Haley, S. M., & Goodgold, S. (2006). Evaluation Of A Community Based Group Fitness Program For Children With Disabilities. Pediatric Physical Therapy, 18(2), 159-167.

González-Agüero, A., Vicente-Rodríguez, G., Moreno, L. A., Guerra-Balic, M., Ara, I., & Casajús, J. A. (2010). Health-related physical fitness in children and adolescents with Down syndrome and response to training. Scandinavian Journal of Medicine & Science in Sports,20(5), 716-724.

Hinckson, E. A., Dickinson, A., Water, T., Sands, M., & Penman, L. (2013). Physical activity, dietary habits and overall health in overweight and obese children and youth with intellectual disability or autism.Research in Developmental Disabilities,34(4), 1170- 1178.

Ilg, W., Synofzik, M., Brotz, D., Burkard, S., Giese, M. A., & Schols, L. (2009). Intensive Coordinative Training Improves Motor Performance In Degenerative Cerebellar Disease. Neurology, 73(22), 1823-1830.

Ilg, W., Brötz, D., Burkard, S., Giese, M. A., Schöls, L., & Synofzik, M. (2010). Long-term effects of coordinative training in degenerative cerebellar disease.Movement Disorders, 25(13), 2239-2246.

Johnson, C. C. (2009). The Benefits of Physical Activity for Youth With Developmental Disabilities: A Systematic Review. American Journal of Health Promotion, 23(3), 157- 167.

Lindsay, S., & McPherson, A. C. (2011). Strategies For Improving Disability Awareness And Social Inclusion Of Children And Young People With Cerebral Palsy. Child: Care, Health and Development, 38(6), 809-816.

Rimmer, J., & Rowland, J. (2008). Physical Activity For Youth With Disabilities: A Critical Need In An Underserved Population. Developmental Neurorehabilitation, 11(2), 141- 148.

World Health Organization (2012). Early childhood development and disability: A discussion paper. Available at: http://www.who.int/disabilities/publications/other/ECDD_final_word.doc (accessed April 30, 2014).