8 minute read
Making a Difference: It Can’t Be Zero
By Kristin Dillon
IN FEBRUARY 2024 , a group of dedicated parents in Metro Detroit faced a disheartening reality: their local school district offered over 875 extracurricular activities during the 2023-24 school year, yet none were tailored to the autism community or provided necessary support for students with special needs. This glaring omission led to the founding of “It Can’t Be Zero,” a budding organization committed to seeking equity and inclusion for the autism community by connecting families, schools, and adaptive recreation organizations.
Here are a few examples of messages that were collected by families highlighting the various ways they were told their children couldn’t participate in extracurriculars:
• Thank you for reaching out. Afterschool classes are run by outside vendors. Our school is the host for outside vendors and their activities. We have not been able to provide 1 on 1 support due to staffing, but parents could provide the 1 on 1 support so long as they have completed an iCHAT form.
• We do not [have] staff or parapro [paraprofessionals] working in break
camps. Unfortunately we have been unsuccessful in trying to locate a 1-on-1 para to support mid-winter break camp. All three of the paras that currently work are not available.
• With the programs you have chosen the adult-to-child ratio is typically 2 adults to 40 children. Some of the camps you chose take place in the cafeteria all day, the others in a classroom. The instructors of these camps are not teachers. They are 3rd party vendors that do not have special education backgrounds.
The mission of It Can’t Be Zero (ICBZ) centers on bridging the gap between autistic students and school-based extracurriculars–both inclusive and adaptive. Recognizing that participation in such activities is vital for social development, skill acquisition, and overall well-being, the organization strives to ensure that autistic children are not left on the sidelines.
The organization’s journey began with a comprehensive approach: presenting robust data, scholarly research, direct experiences from families, and short- and long-term actionable recommendations to district administrators. This initiativeled to the establishment of partnerships between the district, families, and vendors. Kids club supports were introduced, existing school resources like indoor pools and unused gyms were leveraged, and ICBZ connected the school with a range of adaptive vendors available to partner across the 2024-25 school year. They also hosted a listening session hosted by SEMS, a free statewide resource for schools and families. And while these efforts made strides toward inclusivity, ICBZ views them as just the beginning of a broader movement. These efforts marked significant strides toward inclusivity, but ICBZ views them as just the beginning of a broader movement.
The impact of ICBZ extends beyond organizational achievements; it resonates deeply with the families it serves. One such family relocated to Michigan during the peak of the COVID-19 pandemic. The transition disrupted their autistic child’s routine, as lockdowns and shifts to virtual learning and long waitlists for therapies upended his world. Settling in a family-friendly area outside Detroit, they found themselves in a neighborhood adjacent to a vibrant park and playground. The child would often gaze out the window, watching other children engage in baseball, soccer, and afterschool sports, yearning to join them.
This poignant scenario underscored the pressing need for inclusive opportunities in their community.
Despite the abundance of extracurricular offerings in the fall of 2023, this family encountered repeated refusals when seeking 1:1 support for their child. This led them to explore adaptive recreation activities across the county, which, while beneficial, required extensive travel and highlighted the absence of local inclusive options.
The disparity between the community’s vibrant extracurricular scene and the lack of accessible programs for autistic children became increasingly evident.
Through interactions with other families, school staff, and adaptive recreation organizations, a recurring
pattern of barriers emerged. This collective realization sparked the inception of It Can’t Be Zero. The organization’s advocacy efforts have since yielded tangible results: the district now offers open swim hours on weekends, adaptive yoga, exercise programs for autistic students, 1:1 supports for kids clubs, and continues to expand its roster of adaptive recreation vendors. Moreover, channels of communication between families across the district have been strengthened, fostering a more inclusive community. These developments have had a profound impact on the children involved. The aforementioned child, for instance, has embraced a variety of new activities, including therapeutic horseback riding, adaptive swimming, adaptive karate, unified bowling, adaptive gymnastics, adaptive soccer, Easterseals Miracle League baseball, adaptive basketball, sensory-friendly movies, and even a flight simulation program at the Detroit airport. A particularly cherished memory involves the district’s autism community participating in a high school football halftime show, an event that left participants and their families beaming with joy for days.
The driving force behind It Can’t Be Zero? Meet Kristin Dillon, a fulltime working mother and her “Twin” Stephanie L. Jones, who pour their hearts and souls into this cause, not only for their own children but for all special needs families, and the people who hold them up in the community. “I want my son to have the full school experience–not just academics. Fun, friendships and participation in extracurriculars and other school activities are things that all kinds deserve.” Stephanie says.
The “Twins” volunteer their energy and time to nurture the seeds they’ve planted, finding rejuvenation in the work. This endeavor represents a synthesis of shared values, professional background in marketing and the arts, and an unwavering passion for understanding the intricate dynamics of the world. Their shared mission is to connect, discover, and support one another, offering hope and partnership to those who may be running thin on it. Kristin says her vision for It Can’t Be Zero “is a world where our children are fully woven into their school communities—where adaptive and inclusive recreation and enrichment programs aren’t battles to be won, but expectations to be met. A world where any family with a disabled child can walk past a park, hear their child’s name called to come play, and know they truly belong.”
Kristin emphasizes the importance of community involvement and collaboration. She invites parents, schools, and recreation organizations to establish chapters of It Can’t Be Zero in their own communities, fostering a network of support and advocacy. Another parent in a nearby district, Saba Iqbal, caught wind of the cause, and reached out through the website. After meeting Kristin and Stephanie, Saba set up coaching sessions, where Kristin offered her pointers on how to pitch ICBZ to the district, tapping local vendors seeking partnerships, and how to use the original report as a template to tailor to her school community. Saba’s hope, advocacy and gift for outreach was quickly made plain: her son’s district will launch a pilot program this summer, and integrate planning in the 2025-26 school year.
Kristin and Stephanie encourage individuals who feel inspired but uncertain about how to contribute to “just start talking.” And posts an online scheduler to book time to talk. They set up brainstorm sessions where parents, vendors, and anyone inspired to help can exchange ideas and feel safe talking openly about barriers because, as Kristin says, “it’s the only way we can move. We need to be real about what feels isolating or segregated and talk about it. Doing that proves you believe there’s a future worth fighting for. When we see we’re together in this, we can borrow each other’s strengths and talents to do the next thing.”
One of Kristin’s goals was to involve local autism advocate and athlete, Andrew Ackner, as a vendor in her school district. When she called Andrew to share her vision to enhance community support across schools, she learned that he had always wanted to. Months later, he called to tell her that he secured a contract to initiate his first after-school program in the district, marking the beginning of a promising collaboration. In fact, the district contacted Andrew again to build two sixweek summer camps, and families are asking if he can host even more programs at their children’s schools next year.
Visit www.itcantbezero.org, which serves as a platform to ignite peaceful conversations between parents and stakeholders, investing in the future of autism inclusion. It offers resources, reports, articles, and avenues for community engagement, all aimed at fostering a more inclusive environment for autistic individuals.
The narrative of It Can’t Be Zero exemplifies the profound impact that dedicated individuals can have on their communities. By identifying gaps in inclusivity and tirelessly advocating for change, the organization has transformed the landscape of extracurricular activities for autistic children in Metro Detroit.
