Young People with Degenerative Neuromuscular Diseases: The Effectiveness of Muscular Dystrophy Association Summer Camp in Improving Self-help

Abstract

This paper evaluates a facility that provides a service to adolescents – MDA Summer Camp – and its effect on the development of self-efficacy, autonomy, and identity of adolescents with degenerative neuromuscular diseases. Four different research papers were cited to contribute to the evidence of these influences. Two articles analyzed the effect of summer camps on adolescents with chronic illnesses. One article specifically focused on males with DMD (Duchenne Muscular Atrophy).

This was referenced in the paper to give a glimpse of how living with DMD hinders gaining independence. The fourth article discussed the influence of opposite-gender friendships on adolescent development into early adulthood. This aided the paper in giving recommendations on how MDA Camp could allow more appropriate opposite-sex relations since these friendships guide adolescents into healthy development. It is difficult to fathom how influential MDA Camp is on adolescents and volunteers without being fully emerged in the environment during that week of summer, but this paper attempts to give a clear vision of how lessons learned from camp remains with adolescents for the rest of their lives.

Summer Camp Influences the Self-Efficacy

One of the best memories of summer, for adolescents especially, is summer camp. A particular summer camp is leaving a huge impact in thousands of families around the United States. MDA Summer Camp for the state of Virginia hosts adolescents for one week away from home at the Airfield 4-H Center in Wakefield, Virginia. Children between the ages of six and seventeen are enriched in a friendly environment, away from parents, full of various activities such as fishing, swimming, horseback riding, scavenger hunts, sports, games, and more. Every night of the week presents a different special event for those attending. There is only one requirement to become a camper besides the age limit; all individuals are affected by a (degenerative) neuromuscular disability.

This camp is hosted by Muscular Dystrophy Association (MDA), which is a nonprofit organization that fights to cure Muscular Dystrophy and other related neuromuscular diseases by raising money for research and drug development (Muscular Dystrophy Association, 2016). While research is important, the key focus is on the affected community, especially the adolescents. The youth that attend MDA Summer Camp live with Muscular Dystrophy, ALS, Spinal Muscular Atrophy, and other relating physical ailments. Camp requires no expense to the families who send their child due to donations that financially support camp (Muscular Dystrophy Association, 2016). MDA Camp leaves a deep imprint in the adolescents who attend camp along with the staff members, volunteers, and counselors. However, the biggest influence is on the self-efficacy, autonomy or independence, and identity that develop in campers throughout attending camp.

Every camper is carefully matched with a counselor, unless there is a shortage of counselors, in which case some receive two campers. All counselors are individuals at the age of sixteen or older who volunteer to assist and provide as a companion to their camper. While some campers only attend for one year, the majority attend every summer until they “graduate” camp at seventeen; however, memories of camp and the people involved remain in their lives incessantly. This develops a family-orientated atmosphere because some campers, counselors, and staff grow up together for years and continue to stay in contact outside of camp.

MDA Summer Camp in Virginia is held at the Airfield 4-H Center in Wakefield. During the summer, the conference center has the capacity to host 208 people in its lodging (The Natural Place to Be, 2016). People come and go on a part time basis for different camps and events. The equestrian facility includes one hundred horse stalls, two arenas, and scenic trails. The campers are able to take part in a petting zoo, horseback, and ride in a carriage pulled by horses. There is a pool where swimming and the pool party take place. In addition to the pool, there is a lake where campers have the opportunity to fish or ride in paddleboats. There are also various buildings used to host campers and different camp activities, such as the Mess Hall, the Farm Fresh Building, and cabins.

The Airfield Center is known for its conferences and other recreational events. MDA Summer Camp uses the dining hall, which can contain up to two hundred people; the Farm Fresh Building, which can hold up to three hundred; and the cabins, which have the capacity to contain forty to seventy-five people. The Farm Fresh building includes a gym where the Carnival, power soccer demo, and part of Color Wars take place. There is a trailer attached to the building where arts and crafts is located. The Dining (Mess) Hall is where meals, the dance, movie night, the talent show, and announcements occur. Morgan cabin, which can hold up to seventy-five people, is where campers are able to mingle, play games, and find snacks. It is also the location of the Wii tournament, the meeting place for the scavenger hunt, and the Pajama Jam.

Camp organization

Every year of camp is distinguished by a different theme. Examples of previous themes are: “Spy Camp”, “Medieval Times”, “Time Travel”, “Camp Olympics”, and many more. Camp buildings are decorated appropriately to coordinate with the theme, and the weekly schedule goes along with the theme; various camp activities are matched as close as possible to the theme. There are certain activities to choose from each day, and every night involves a different “special” activity as well.

Everyday there is wakeup call at seven o’clock am, breakfast at eight o’clock am, lunch at noon, rest hour after lunch, and dinner at either half past five or six o’clock in the evening. Wakeup call consists of the camp directors singing “Wakey wakey eggs and bakey” on the intercom throughout all of the cabins, playing other obnoxious songs on the intercom, and walking through cabins while playing instruments such as the trumpet and drums. One of the camp directors would also prompt people to scream if they were awake. Lights out is at ten o’clock pm, in which counselors are responsible for their campers being in bed. This is an example of what a general schedule for camp would look like:

Sunday: Check-in, meet counselor, turn in medications, explore camp until dinner and the night activity. Campers and counselors are assigned to different rooms in cabins. About three or four camper-counselor pairs are in each cabin room, which makes six to eight people total per room.

Nighttime activity: Bonfire and skits. S’mores will be made or provided as well.

Monday: Daytime activities.

Nighttime activity: Pool party or movie night.

Tuesday: Daytime activities.

Nighttime activity: Carnival.

The carnival involves a picture booth, “haunted” hayride, games with prizes, Harley Davidson motorcycle rides, food, a dunk tank, and formerly, “marriages”. Campers would ask other campers, counselors, and staff members to “marry” them. If accepted, they would have a pseudo wedding ceremony at the carnival; the individuals involved would wear a veil or top hat, and they would each receive a pseudo wedding ring. In recent years this was removed from the carnival. It was simply an activity that friends would partake in or others who had childhood crushes, but it may have been viewed as controversial, which is why it may have been extracted from traditional camp activities.

Wednesday: Daytime activities. Scavenger hunt and tie dye. Color Wars.

Whoever completes the scavenger hunt with the most items found and in the shortest amount of time, first through third place, is able to choose an individual at camp to pie in the face with whipped cream.

Nighttime activity: Dance.

Thursday: Color Wars. Wii tournament (some years). Power Soccer demo.

Color Wars is a tradition of competition involving a series of games and activities where the Blue team is against the Red team. Competition involves tug of war, “pie eating” contest, retrieving a watermelon from the deep end of the pool, relay races, a pinewood derby, and more. Teams are designated based on the even or odd number of the cabin room.

Power soccer is the first competitive sport designed for athletes in power wheelchairs. Since a vast majority of MDA campers are in wheelchairs, this is a good opportunity for them to try out a sport they can actually participate in. Being involved in a sport can help individuals establish their identity. “Involvement in sport appeared to have decreased … the individuals' awareness of their disabilities which was tentatively linked to the exploration of and expression of identity …” (Groff, 1998). Since MDA Camp strives to help campers accomplish identity achievement, power soccer is a helpful outlet for eligible aspirants to discover who they are and be a part of a family-orientated team.

Nighttime: Talent Show. Pajama Jam – campers are allowed to stay up later and spend time in the main cabin, Morgan. People usually stay up to play card or board games, listen to music, and conversing.

Friday: Pack up and check out at noon.

Daytime activities consist of either fishing, pool, arts and crafts, paddleboats, petting zoo, or horseback riding. On some days there are special activities during the day such as tie dye, the scavenger hunt, and Color Wars.

Area of Interest

According to G. Stanley Hall, adolescents are going through a period of storm-and-stress. However, this period of emotional, physical, and cognitive development and confusion is heightened when an adolescent is also required to cope with a chronic physical disability (Allsop, 2012, p.1).

A multitude of children spend endless hours in the hospital for routine check-ups that occur more often for them than for their able-bodied counterparts. They undergo a number of surgical procedures to attempt to give them a more comfortable lifestyle. There are unexpected overnight stays in the emergency room for the flu, which is at a high risk for turning into pneumonia or some other high-risk illness. “For some young men [with Duchenne Muscular Dystrophy] it made sense to them to not go out much in winter and not be around other people for fear of getting a chest infection that could kill them" (Abbott & Carpenter, 2015, p.75). For adolescents with degenerative neuromuscular diseases, the typical flu can escalate into pneumonia quite easily, which could result in death if not treated because their immune systems are too weak to handle the crippling sickness.

Many of the MDA campers have Muscular Dystrophy (MD) and Spinal Muscular Atrophy (SMA). With these particular conditions emanates a host of health problems. For the more severe cases, this includes respiratory problems such as breathing and low lung function (some are on temporary or permanent breathing machines), problems swallowing, decreased muscle function, scoliosis, fragile bones, muscle pains and spasms.

A majority of the campers are in wheelchairs; thus they need assistance with everyday tasks. Individuals with less severe disability types are able to have some independence, but others might require help with transferring, dressing, bathing, feeding, toileting, being adjusted in their chairs, and other daily activities. A key aspect of adolescence is establishing an identity, and a factor of identity is striving for autonomy. Some adolescents with disabilities struggle to find adequate independence, especially away from their overbearing parents who exaggerate caution and codependency in everyday life. “It was evident that these restricted the young men’s choices and the possibility of developing independence from their parents” (Abbott & Carpenter, 2015, p.71).

MDA Camp helps campers build independence. Larry Chip Young Junior, a previous camper, says, “I promise that because of MDA Camp I am a stronger, independent... prism. Through camp I understood, from a young age, that we the campers could freely pursue life. People dedicated and volunteered their lives to show us how worthy we are against the obstacles we're born with”. Campers are away from their parents for one week, and are aided by a younger counselor who encourages them to be as autonomous as possible. While a week may seem but a short duration, this autonomy that is practiced at camp will stay with the individuals afterwards continually for years if not forever. Once campers realize they are able to be independent despite having a disability, they gain autonomy that is everlasting.

According to the United States Census, about one-fifth of the population affiliates with having a disability. Part of that population includes the youth. “Over two million adolescents in the United States have some form of a chronic illness and frequently have decreased levels of social self-efficacy and social performance” (Allsop, 2012, p. iii).

Not only does their disability affect them physically, but these particular adolescents are at a higher risk of lacking in social skills as well. “Self-efficacy is the belief that one can master a situation and produce positive outcomes” (Santrock, 2016, p. 375). Achieving self-efficacy is a factor for efficaciously developing through adolescence and is necessary to positively emerge into adulthood. Attending MDA Camp gives individuals the chance to intermingle with others who are “just like them”.

MDA Camp increases their self-efficacy; seeing other campers with similar situations who are making accomplishments in life gives them the hope and confidence that they can be successful as well. This summer camp is also a good opportunity for campers to practice social performance. It is easier to converse with someone who is relatable, but it often poses a challenge to communicate with people who are superior or better off than them. If they are able to socially interact with people who resemble them, then they can build up the tolerance to interacting with almost anyone.

Recommendations

As the years go on, camp directors and staff change with time. With new staff members leading camp, the rules are altered in addition to people becoming stricter. Originally, boys and girls were allowed to hang out in each other’s cabins in addition to being able to prank other people. Pranks included toilet papering a room and beds, toilet papering the camp director’s car, spraying silly string in the rooms, tying doors to each other with bungee cord so the people inside were not able to open their door, using duct tape, and more.

The first rule to be established was that boys and girls were no longer allowed in each other’s rooms. Then pranking was done away with because it was claimed to be too dangerous for medical equipment. Soon after, rest hour became stricter, and campers were required to stay in their rooms during that time period. The newest rule is a more stringent buddy system: campers must be in a group of at least three at all times. In order to make camp a more enriching experience, the rules should fall back to the original lenience.

Pranks were a huge camp tradition; adolescent boys and girls would meticulously plan them out and video tape the best pranks to record memories. It was a huge disappointment to campers and counselors to remove the custom. Another recommendation would be for the camp staff to be more lenient in general; allow boys and girls to hang out in cabins and get rid of the three-buddy system. Boys and girls need to learn how to interact together in order to successfully develop into adulthood.

Another dramatic change during mid to late adolescence is the increasing time spent in social interactions with opposite-sex peers, as in the beginning of dating behavior which prepares the adolescent for adulthood. Studies of heterosexual adolescents’ social development therefore need to attend to cross-gender functioning. (Hops, Alpert, & Davis, 1997, p.166)

A normal buddy system is sufficient enough so that a camper-counselor pair can travel together and will not have to search for a third person to go with them. Participants agree that as years go by, camp has become increasingly stricter, and these recommendations would ensure that camp returns to its original level of enjoyableness.

Conclusion

The first year experiencing MDA Summer Camp is frightening, because for some young adolescents, this is their first time away from home. However, there is a reason the same campers, volunteers, and staff members return every year. MDA Camp creates a huge impact on everyone who experiences it, but especially the campers.

Adolescents grow up together attending camp, and this is where they establish self-efficacy and their identity; individuals are able to learn from their peers that they are capable of overcoming daily challenges even with a disability and learn a better sense of who they are. Their autonomy increases tremendously as they are prompted to accomplish things by themselves without too much dependence on others. Being away from parents and guardians helps with this goal because they often help their adolescent children too much and do not give them sufficient opportunities to be independent. MDA Camp is an overall enriching atmosphere that helps adolescents with disabilities discover themselves and successfully progress into emerging adulthood.