Being the parent of a special needs child — no matter his or her age — can be isolating and overwhelming at times, but the families of Woodford County have a new resource to rely on as they navigate these all-too-often ignored, underfunded and under-supported waters.
ACES for Families of Woodford County was started in August 2014, according to Jean Moore, an active member whose 20-year-old daughter Kaitlin has Down syndrome and attends Metamora Township High School, as an inclusive network of parents who advocate for people with special needs by working with school and community members to foster partnerships for advocacy, community connections, education and social supports.
“What we are about is helping parents in Woodford County with whatever they need, whenever they need it,” she said. “It’s not so much about counting how many people we’ve helped, it’s about being there when somebody needs us. Woodford County does not have a lot of services, and sometimes the parents are a little bit lost.”
But ACES is identifying community support and building key relationships. The organization, for example, recently named Kaylie Breaux, a special education teacher at Metamora High School and head of the functional skills program, its Special Education Advocate of the Year at the end of 2015.
While ACES is not a very hierarchical organization, Moore said that Jackie Blackburn is the closest to being the group’s founder, as “she was always pushing us forward to keep meeting. She’s been a constant force she is always been the main facilitator.”
Along with Moore and Blackburn, other founding members include: Megan Mutti, Alysia Rumier-Short, Carman Wallace, Becky Gohs, Teresa Parks, Margaret Baker, Shari Cooper, Audrey Haney, Erin Lane, D’Andra Griffith-Derr, Janice Arnoldi and Mari Garza. And the current ACES of Woodford County board members are Amanda Nauman, Bill Grohs, Rumier-Short, Baker, Moore, Blackburn and Griffith-Derr.
As its name suggests, ACES is divided into four committees, each focused on collaborating and building partnerships to make sure that the voices of local parents of children with special needs are heard, per the group’s website:
- “The ADVOCACY committee cultivates influence in our schools and communities.
- “The COMMUNITY CONNECTIONS committee builds relationships within our communities.
- “The EDUCATION committee delivers education and information to families, educators and community members.
- “The SOCIAL SUPPORTS committee provides a social network for our parents, adults and kids through social gatherings, recreational activities and support group.”
Moore explained that every parent’s journey as an advocate for a loved one with special needs is different, even if there are countless similarities. She noted that one of the first times ACES invited parents of children with special needs and members the county’s special needs administration and support teams to a meet-and-greet, “the thing that really came across to me was all the pain in that room. There’s a lot of pain, and that pain was coming from what was or was not going on at their school.
“The main goal [of ACES] comes down to having people come together and not have all that pain,” she continued. “Helping parents get some answers or a solution or a little bit of power so they can get themselves heard. And what we found is that a single parent by [herself] who has a complaint doesn’t nearly have as much power as a group of parents standing behind [her] with their hands on their hips saying, ‘Yeah, what she said.’
“When Kaitlin graduates from high school, she then starts to falls off the cliff in terms of social opportunity. … Once kids graduate from high school, there’s really not a lot of opportunities to be included or integrated into social activities,” Moore said. And those gaps in social opportunities are just one of the things ACES plans to address moving forward, along with identifying ways to connect with un-served families, either digitally or in-person, that have the lowest-barriers to entry possible.
“I would not say right now that we’re serving the whole county right now,” Moore said. “We have maybe 15 or 20 people at our meetings, though, it’s not like everyone needs to come to every meeting. When people have an issue, they come. We have probably directly helped about 50 or 60 families.”
Upcoming ACES events
Along with its own advocacy and support, ACES offers families information about local resources, and its next two events are:
- March 7, 2016: Dyslexia and Learning Disabilities WCSEA
- April 4, 2016:Connections and Support Open Meeting
— Woodford parent network advocates for people with special needs —