Jon’s Heroes in Training: A Cross-Sector Collaboration Serving University and Community Stakeholders

Abstract

Jon’s Heroes in Training (JHT) represents a strong cross-sector collaboration that was created and has evolved over the past five years. JHT is an after-school program where children (ages 3–22) with an autism spectrum disorder (ASD) diagnosis come to the local university to engage in high-quality physical education lessons designed and implemented by physical education teacher education (PETE) students currently taking a required Adapted Physical Education class. This article discusses (a) the process required to establish the shared mission and vision of JHT and the role of the Office of Civic Engagement (OCE); (b) the negotiated roles and responsibilities of stakeholders, including university faculty from PETE, PETE students, children with ASD and their families, and local non-profit organizations; (c) the impact of JHT on its stakeholders; and (d) lessons learned and future directions.

Universities and the communities in which they are located are unique and dynamic places where each is impacted by the other, for better or for worse. There has long been a call for universities to become more highly engaged with their local communities (Ehrlich, 2000). Service-learning relationships are one way to combine the need for student learning experiences to extend beyond the classroom while meeting the unique needs of communities (Kenworthy-U’Ren et al., 2005). Service-learning and civic engagement rely heavily on theories of collaborative planning, action, and advocacy (Danley & Chistiansen, 2019). For these relationships to develop and benefit both the university and its students, as well as the community, in a mutually beneficial and reciprocal manner, they must be a two-way street (Norris & Martin, 2021; Sandy & Holland, 2006). There must be intentional planning, open communication, and a willingness to hold each other accountable if the relationship is to be established, maintained, and grown to meet the needs of all its stakeholders. The success and longevity of cross-sector collaborations is based on ensuring that all stakeholders have a voice in the process, that all stakeholders are benefiting from the collaboration, and that all stakeholders invest time and energy into growing the collaboration (Elfreich & Helfenbein, 2017). It is this foundation of collaboration and community service that Jon’s Heroes in Training is based upon.

Jon’s Heroes in Training

Jon’s Heroes in Training (JHT) was conceived in 2017 from the story of one young man’s experiences. Jon’s story is from his perspective as a K–12 student and a person with autism spectrum disorder (ASD). Those experiences shaped Jon’s life goal of ensuring autism acceptance in his community. At the age of 15, Jon created a nonprofit organization, Heroes Embracing Autistic Lives (H.E.A.L.) to educate people in his community about what it is like to live with ASD and the importance of the acceptance of those with ASD. Unfortunately, Jon passed away in 2013, at the age of 20, from a traumatic brain injury. His foundation, H.E.A.L., and its passion for acceptance of those on the spectrum, continues through the efforts and passion of his family. JHT first began in September 2018 with nine children with an ASD diagnosis attending the program, run by 18 preservice physical education teacher candidates. Since that initial semester, JHT has grown to 40 preservice physical education teacher candidates serving over 35 children with ASD. Since the inception of JHT, approximately 30 families with children on the spectrum and 250 teacher candidates have benefited from participation in the program. Each semester, JHT runs for 12 weeks on Mondays and Wednesdays, dedicating one hour per week to each individual.

A chance meeting in 2014, between the lead author, tasked with teaching an adapted physical education class for preservice physical education teacher candidates, and Jon’s parents became the impetus to develop JHT. Over the next several months Jon’s parents openly shared Jon’s story of ups and downs living and thriving as a young person with ASD in the local community.

Jon was diagnosed with Asperger’s, a form of autism, when he was eight years old. He attended public K–12 schools and graduated from high school in 2011 with plans to enroll in film school, where he had been accepted at the time of his death. Jon did not consider himself disabled; rather, he said, “Everyone has unique qualities and special abilities. I know that I can’t cure autism, but I can choose to share my life with others and help them to embrace those living with it” (Heroes Embracing Autistic Lives, Inc, n.d.). When interviewed by a news station, Jon described school as the place where he got “beaten up.” To Jon, the way that some people, peers and teachers alike, treated him felt painful, like he was being physically beaten daily.

Bad days were not always the norm; in fact, many of Jon’s fondest memories of school revolved around some of his physical education teachers. Jon found encouragement and acceptance from several of his physical educators across his K–12 experience.

For much of Jon’s life, he tried to hide his Asperger’s from everyone around him. He simply wanted to be accepted as he was and did not want to be treated differently than his peers. That was, until his third-grade teacher called him out of class so he could be read an exam by shouting, “Jon, come with me, you know you have autism, and you need me to read the test for you.” This violation of Jon’s right to privacy was so devastating to Jon that he refused to speak at school for six months.

That all changed as Jon completed his confirmation service project where he played his guitar in a local coffee house frequented by a variety of people in town, many of whom were experiencing difficulties in life. In one of his playing gigs at the coffee house, Jon struck up a conversation with a young adult that lasted for several hours. Upon leaving, Jon was told that the man he was talking with had not said a word in years and that Jon’s ability to play music and to accept others was a gift, and a foundation was born. For one of the first times in his life, Jon saw his autism/Asperger’s not as something to be embarrassed about and hidden but as a superpower that needed to be shared with others.

Upon hearing Jon’s story in 2014, the lead author, who was responsible for, and a new instructor of, the only required adapted physical education class for general physical education teacher candidates began to think about how to minimize the risk of future physical educators treating students with ASD, or any other disability, in ways that were harmful. It became the mission of the instructor to work to ensure that no preservice physical educator left the physical education program unprepared and unaware of how to better meet the needs of students with ASD, who often receive their adapted physical education services in a general physical education class.

Another chance meeting, this time with an expert in ASD who worked to serve families in the community as they navigate the special education system in public schools, highlighted the need for access to physical activity opportunities. The adapted physical education instructor quickly learned that many children with ASD struggle to engage in activities during physical education, lunch, and recess. Additionally, children on the spectrum tend to have fewer opportunities to engage in safe and appropriate physical activity in their communities (LaVesser & Berg, 2011).

Given these circumstances, the idea was conceived to develop a practicum experience at the university where children with ASD would be paired with preservice physical educators who were charged with assessing children’s present level of performance in the motor domain, designing weekly lessons based on data collected, and sharing student “progress” with parents through weekly progress reports. Understanding the need for such opportunities for the children with ASD in the community and the need for more practicum experiences for future physical educators, networking with the Office of Civic Engagement (OCE), University Recreation, community stakeholders, and the H.E.A.L. Foundation led to the development of JHT.

Mission and Vision of Jon’s Heroes in Training

The mission and vision of JHT was crafted from many meetings attended by different stakeholders at the university and in the community. At the initial meeting, arranged by the OCE, the H.E.A.L Foundation president and vice president, as well as representatives from MarcFirst, Hammitt School, The BabyFold, and the YMCA (all community organizations that were currently working with children with autism and their families in McLean County), met to discuss the development of JHT. At its core, the mission of JHT is to provide quality physical education experiences for children ages 3 to 22 with ASD on a weekly basis. It was crucial that these opportunities be provided at no cost to the families of the children; therefore, the H.E.A.L. Foundation works to fund the program. Parking, T-shirts, certificates, and weekly snacks are provided, along with fun and educational experiences for both the children with ASD and the future physical educators. Growth, changes, and shifts in direction are all guided by the question, “Is it good for the children with ASD?” If the answer is yes, then the stakeholders work to ensure that the changes can happen. If the answer is no, the ideas are not pursued. Quite simply, the mission and vision of JHT are always about the children, first and foremost.

A secondary mission of JHT is to provide preservice physical education teacher candidates with high-quality, hands-on opportunities to interact with children with ASD and their families through physical education. JHT should provide preservice physical educators with knowledge, strategies, and appreciation for working with students with ASD enrolled in general physical education. Stakeholders work together to create assignments and opportunities for preservice teacher education students to work in contexts that may be uncomfortable and new to them, while providing guidance and support to allow for maximum learning and growth across the semester.

The third mission of JHT is to provide a service to the community. McLean County, the home of Illinois State University (ISU), is considered an “autism-friendly community” and includes many community resources to help support people with ASD and their families. Early in the development of JHT, a variety of nonprofit organizations were solicited to determine the needs of the community that were not currently being addressed. The need for physical activity and physical education opportunities outside of K–12 schools was identified as a significant need that was not currently being met.

The three pillars described above served as the focus for the development of JHT and continue to serve as the foundation for all decisions made regarding JHT and its evolution. Community services, families of children with ASD, children with ASD, university partners across campus, and the preservice physical education teacher candidates are regularly asked to provide informal and formal feedback about JHT. Specifically, stakeholders’ input into the impact of the program, strengths and weaknesses of the program in its current form, suggestions for future changes and modifications to JHT, and overall effects of JHT on the stakeholders is sought on a weekly basis. It is this open and honest communication that allows JHT to meet the current and future needs of the children with ASD and their families, the local community, the preservice physical education students and overall program, and the university community.

Negotiated Roles and Initial Impact

As JHT developed and has grown, there has been a constant need for stakeholders to negotiate roles within the program. The university instructor, serving as the “general contractor” of JHT, works with the special education consultant, the OCE, the nonprofit community organizations, the teacher candidates, and the children and families of children with ASD to maximize impact and success of JHT for all stakeholders. The negotiated roles and initial impact of JHT on each of these stakeholders will be discussed.

Table 1. Parent and Child Descriptors

Parent	Child Gender	Child Age	Child Years in Program
1	M	8	3
2	F	11	5
3	M	15	4

It is the responsibility of the university instructor to organize the stakeholders, maximizing each stakeholder’s contributions to JHT while ensuring that the program continues to grow while maintaining its mission. The priority lies in making sure that children with ASD receive a safe and successful experience while on campus. To do that, communication with parents, children with ASD, the special education consultant, and the preservice teacher candidates is essential. While at JHT, the university instructor’s role has been to supervise activities, interact with parents, provide support and feedback to the physical education teacher candidates, problem-solve with the special education consultant, secure funding and space for JHT, and coordinate schedules.

In 2017, when JHT was conceived, the instructor had no idea how impactful the program would be on the physical education teacher education program, the autism community, and the university instructor as a professional and as a human being. Starting the program, with the help of so many, was a daunting task that required a great deal of patience and passion. Keeping the program going and improving requires that the instructor engage in ongoing self-reflection and professional development to ensure that the needs of all stakeholders are being met.

The university instructor’s teaching continues to be impacted through engagement in a variety of professional development opportunities including certification as an exercise specialist in autism from the American College of Sports Medicine, attendance at state and national adapted physical education sessions to learn new skills and strategies, and networking with adapted physical educators in the state. The instructor’s need to be self-reflective through JHT has created practical examples of how to engage in self-reflection as a teacher for the preservice teacher candidates. Reflecting together, in real time, with shared experiences has been an invaluable tool for the university instructor as an educator and for the students as future educators.

The special education consultant has played a pivotal role in the success of JHT. The consultant meets regularly with the instructor, at times visits the schools of some of the participants in JHT, provides daily visual schedules, and works with teacher candidates to help ensure that their child on the spectrum can remain regulated and learn important social skills needed to be successful in a general physical education classroom in the future. The special education consultant also provides online learning modules about working with children with autism. Modules cover a basic understanding of autism, use of visual schedules, communication training, behavior assessment and behavior management, and evidence-based instructional strategies, to name a few. Preservice teacher candidates have access to these modules, and they are used during the adapted physical education class as learning foci.

The OCE’s initial role was to serve as a convener. One of OCE’s primary goals is to support campus–community partnerships. The university instructor, with the help of the H.E.A.L. Foundation, had the vision for JHT. OCE’s role was to bring together faculty/staff and community-based organizations that could be potential partners to make JHT a reality. We convened a meeting where individuals from Kinesiology and Recreation, Special Education, the College of Applied Science and Technology, Campus Recreation, and several local nonprofit organizations (MarcFirst, Hammitt School, The BabyFold, and YMCA) were invited to attend. Most of the time was spent in open conversation as campus and community members shared ideas and reactions and asked questions. Core to the conversation was ensuring that the instructor’s vision aligned with a community need, because this is critical in designing service-learning partnerships. This was affirmed, and the meeting became the first step toward achieving the vision of JHT.

Taking the idea from initial conversation to implementation in the time it was done is quite impressive given the complexity of this kind of service-learning partnership. It requires the recruitment of parents and families interested and willing to participate in the program held on Illinois State’s campus, facility reservations, and administrative procedures for hosting minors on campus along with the necessary training of the college students so they are prepared to interact and conduct activities with the children.

Just two years after the initial conversation, JHT was featured in the fall 2019 issue of Redbird Impact magazine, which recognizes programs and people on campus who are having significant impacts on the university and the community. OCE was proud to see the initiative featured to showcase the hard work of JHT because these kinds of efforts often do not receive the recognition they deserve. We also believe it helps to advance the institution’s core value of civic engagement.

The role of the nonprofit, H.E.A.L. Foundation, is to offer support and, where possible, expertise to the program. We attend the classes as the face of the H.E.A.L. Foundation to act as a bridge between the parents of the participants in JHT and the ISU students who work with them. We interact with the parents, offering our support as parents who have traveled this path before them. The H.E.A.L. Foundation offers help to ISU students during lessons; provides financial support for parking, T-shirts, snacks, and new materials; and takes photos to document lessons. Documenting lessons and sharing these photos is a wonderful way to ensure that the children in JHT and their families can see them engaging successfully in physical activity.

The initial impact of this program is seen in the smiles and laughter of the participants and the gratitude of their parents. Most of the children who attend JHT have not played any organized sports. They are often the last child chosen for teams in physical education classes. Receiving individual attention from the ISU Heroes in Training (teacher candidates) has a profound impact on them. It is the reason why so many of the children who participate return to the class the following semester. We learned that bringing the families together helped not only the families connect but also helped the ISU students across disciplines understand the broader needs. The cross-community connections, in addition to shining a light on autism acceptance, helped the H.E.A.L. Foundation reach a larger segment of the community and raised awareness of the importance of autism acceptance, which served to promote two of the H.E.A.L. Foundation’s primary missions.

College students taking the adapted physical education course at ISU are given many responsibilities as they assume the role of teacher for the children participating in JHT. Typically, physical education teacher education majors are paired with a child to work one-on-one, once a week; however, at times a student may be asked to work with more than one child or with a peer teacher in a 2–1 situation. As the teacher, preservice physical educators are responsible for conducting early-semester baseline data collection related to motor development and fitness. Once results from these assessments are evaluated, teacher candidates are tasked with developing lessons that target areas for improvement of specific skills and areas of fitness that the child was struggling with during testing. Teacher candidates then write lesson plans, request equipment needed for weekly lessons, and set up and teach the lesson to the child to whom they are assigned. After completing the lesson, teacher candidates write a weekly progress report that is shared with parents/guardians via email. The report describes the lesson taught, includes any strengths and weaknesses in the skill worked on, describes the child’s behavior during the lesson, and highlights the skill that will be the focus for the next lesson.

JHT is a valuable clinical experience that has impacted the lives of the preservice teacher candidates in many ways. Through this experience they can learn more about the autism community and how they as teachers can support students with ASD within the physical education and school environment. The initial experience teacher candidates have is with Jon’s parents. Each semester, Jon’s parents come to class and share Jon’s life story with the adapted physical education class. This experience is very impactful because the physical education teacher candidates can relate to the humanness of Jon’s story. Often, the teacher candidates are quite emotional as they listen to Jon’s struggles with physical education classes, unkind classmates, and teachers ignoring Jon’s individualized education program. After hearing about the difficulties Jon had with his teachers and classmates, teacher candidates were inspired to be a better teacher and advocate for students with disabilities.

While working one-on-one with the children each week, the first thing physical education teacher candidates gain is empathy by learning to accept and understand the children for who they are, rather than trying to fix them or change them. Through this experience, teacher candidates are better able to understand what it means to have autism and they learn how to encourage the unique skills and abilities that each student with ASD brings to the table. That, in the opinion of one teacher candidate, is crucial in making sure that no student with a disability struggles with physical education class the way Jon did. Learning about Jon and participating in JHT is an impactful experience because it sparks a passion for working with students with ASD and contributes to teacher candidates’ preparation for working with future students with or without disabilities.

Families of children attending JHT play an integral role. They are the ones who are responsible for getting their child to weekly sessions, which is no small task for some children attending JHT. In addition, families provide important information about their child’s day, specific needs of their child that day, and key information about emotional regulation strategies that work with their child. An unforeseen product of JHT has been the development of friendships and resource sharing among the parents and guardians of children attending JHT. In some instances, families engage in lessons with their children to help the teacher candidates and their children get comfortable in the gym. As the relationship between the child and their teacher grows, families fade out of the gym to allow for more student autonomy.

Below are the expressions of three parents about their children’s experiences in JHT (see Table 1).

For our son, the impact of Jon’s Heroes has been positive… . The first reason is he has been able to further develop his gross motor skills. Since birth, my son’s gross and fine motor skills have been delayed. He began receiving therapies at the age of 18 months. He was also prescribed orthotics to improve his pronation at 22 months. Motor tasks have never come easy or have been a choice activity for my son. However, Jon’s Heroes is a preferred activity and provides him an opportunity to practice skills that are difficult for him in an environment that is welcoming, fun, and specialized to his needs.

Another reason is he has been able to practice sharing preferred items. Unfortunately, sharing a favorite toy or game is not something my son enjoys. He has fears that the item will be used incorrectly, lost, or broken if he does not maintain it in his possession. Jon’s Heroes is a place that encourages sharing and turn-taking and allows my son to practice and improve this skill in addition to the gross motor tasks he is practicing.

A final reason Jon’s Heroes has had a positive impact for my son is it has allowed him to interact with others who may have varying needs and abilities. He can see and learn about the diversity of the autism spectrum. Interacting with others in a positive manner no matter their strengths or challenges is an important life skill, as well as accepting his own strengths and weaknesses and how he can contribute to a group. Jon’s Heroes provides him with these unique opportunities. (Parent 1)

Jon’s Heroes has been a vital component in my daughter’s development. The Heroes in Training evaluate my daughter’s skills, then choose specific skills to work on. The one-on-one lessons tailored specifically to my child allow her to learn skills easier. My daughter has seen marked improvements over the course of one hour per week. Working on coordination needed for physical education has improved my daughter’s balance for walking, her handwriting and reaction times with everyday activities. I am so pleased with the progress she has made through this program. Every week we meet is like a family reunion. The kids are so excited to see each other and socialize. (Parent 2)

Jon’s Heroes made an immediate impact on my child’s willingness to participate in school physical education. It also helped educators at his public school know how to better connect with my son. (Parent 3)The roles of each stakeholder in JHT have developed over the years through open communication, a shared vision, and the willingness to collaborate on behalf of the program rather than control the program. Each stakeholder is an essential component of the complex program that is JHT.

Lessons Learned

As with any project, there are lessons to be learned as you experience both successes and difficulties. Successes are rarely achieved without some dissonance and difficulty. The persistence of each stakeholder through the growing process has been an integral part of JHT for all those involved.

JHT has taught the instructor, a physical education teacher educator, many important lessons. First and foremost, it teaches the instructor that she is not perfect, nor should she expect perfection from herself. Persistence is much more valuable than trying to attain perfection. Working to develop, maintain, and grow JHT has taught the instructor that successes can and should look different for all students in physical education.

JHT has also reminded the instructor that teaching can be scary and difficult, but full of joy. The smiles on the faces of children with ASD and their families, the board members of the H.E.A.L. Foundation, the physical education teacher candidates, and all those who stop in to see JHT have taught the instructor that there is value and joy in simply doing the best you can to help others. As a teacher, helping others is why the instructor chose the profession all those years ago.

The November 2017 meeting of potential partners for Jon’s Heroes was the first campus–community conversation OCE facilitated. We were still a new department in our first semester. The role of the office was new to campus. Step one was to convene a meeting; that kind of thing had not been done before. That meeting became the model for how we have campus–community conversations. The configuration of who is present (many partners with one faculty member, many faculty members with one partner, many partners and many faculty, etc.) along with how many people are present varies for each conversation, but the core function is the same.

Teaming up with the H.E.A.L. Foundation, which has ties to the local autism community, reinforces our efforts to spread autism acceptance. The H.E.A.L. Foundation has enjoyed having ISU students join us as we march in the ISU Homecoming parade each year. The ISU students and participants have also learned about other organizations in the local autism community like The Friends of The Autism Place, which, along with the H.E.A.L. Foundation, sponsors an end-of-semester spring picnic for all to enjoy. The H.E.A.L. Foundation learned that bringing families together not only helps the families connect but also helps the ISU students understand the broader needs.

Prior to taking the adapted physical education course at ISU, many teacher candidates have little to no experience teaching or working with children who have disabilities. Through this experience, teacher candidates can work with many different children on the spectrum. Given the wide age range among the children who attend JHT, teacher candidates quickly learn how to modify each lesson to make it developmentally appropriate for each child. One of the biggest lessons preservice teacher candidates learn is that patience is key when working with students with disabilities.

Future Directions

Continued growth and development are the key to sustaining a project like JHT. Each semester, some of the stakeholders change, new stakeholders appear, children grow out of JHT as they become members of school and community teams, teacher candidates move on to student teaching and their careers after ISU, families move in and out of the area, and the needs of children with ASD evolve. Despite these inevitable changes, JHT continues to hold true to the vision established in 2017. To ensure that this vision and JHT persist long into the future, changes must be made. Using the principles of good practice for combining service and learning originated by Honnett and Poulson (1989) and shared by Shapiro (2021), some future directions of JHT will be discussed.

1. An effective program provides structured opportunities for people to reflect critically on their service experience. Though a critical reflection of JHT from the preservice physical education candidates has always been a part of the experience, more needs to be done to seek the critical reflection of the children with ASD. Currently, that reflection occurs informally through asking the children questions about their experiences at the end of each JHT session. A more structured and formal reflection process would be a great next step in the development and growth of JHT. Additionally, a survey developed for families and for the community, seeking feedback about needs that JHT can fill, would be a move to include more reflection from all stakeholders, thus helping to focus on the common good.

2. An effective program allows those with needs to identify those needs. This is a huge area for growth for JHT. Though much work has been done with nonprofit organizations in the community to determine the needs that must be met, little has been done to seek the same input from the children with ASD who attend JHT. Their insights into what is needed not only has the potential to improve the program but may also go a long way toward allowing the children to feel more invested in JHT.

3. An effective program includes training, supervision, monitoring, support, recognition, and evaluation to meet service and learning goals. The university instructor is always present when teacher candidates are working with children in JHT. Originally, JHT was to utilize special education teacher candidates as resources for the children. That has yet to come to fruition but remains a key to the continued success of JHT. Developing these collaborations while on campus will help the children be more successful while simultaneously demonstrating how valuable teacher collaborations across areas of expertise can be once teacher candidates begin their careers in public schools. Practicing asking for help and realizing that we all have our area of expertise that can enhance the education of students is an important lesson that novice teachers need to learn while in their teacher preparation program.

4. An effective program is committed to program participation by and with diverse populations. Here is another substantial area for growth. Though the lessons learned at JHT working with children with ASD are valuable and generalizable to working with all students, a concerted effort to open JHT to students with other disabilities is crucial. Doing so would help teacher candidates develop a wider range of understanding and knowledge for working with children with disabilities, create more opportunities to meet the needs of a larger segment of the community, and help to include a more diverse population at JHT.

Discussion

As mentioned in the introduction of this special issue, workforce development for a broader physical education system that supports quality educational practices is a key issue in the physical education community (Jones et al., 2022). JHT is an example of community engagement and action research that reflects the process of developing and maintaining a strong collaborative workforce-development system. A need was identified first in the community (i.e., limited opportunities for children with autism to engage in high-quality physical education and activity); second, at the physical education teacher preparation program level (i.e., the need for more hands-on experiences for teacher candidates working with children with autism); third, at the university level (i.e., OCE’s need to promote community engagement and service learning on campus); and, finally, from the desire of local nonprofit organizations to help (i.e., The H.E.A.L. Foundation’s dedication to providing resources necessary to run Jon’s Heroes in Training). JHT only works because of the bridges built across these groups to develop and grow a program that meets the needs of all stakeholders involved. Each stakeholder brings their own unique perspective, expertise, knowledge, and resources to add to the equation that has led to this dynamic and growing collaborative. Each stakeholder had to have their voice and concerns heard around a common issue, and JHT provides that opportunity in a mutually beneficial and reciprocal manner. To continue to grow JHT, stakeholders must see returns on their investments and feel like contributing members in the development of future initiatives.

Disclosure Statement

No potential conflict of interest was reported by the authors.

Additional information

Notes on contributors

Mary L. Henninger

Mary L. Henninger ([email protected]) is a professor and Brittany LeFevre is a student in the Department of Physical Education Teacher Education at Illinois State University in Normal, IL. Harriett Steinbach is the director of Innovation and Strategic Partnerships in the Office of Research and Graduate Studies at Illinois State University. Geralyn Miskulin is the president and Joe Miskulin is the vice president of Heroes Embracing Autistic Lives in Normal, IL.