This year, Durham-based MDC chose nine organizations to join a program called “Learning for Equity: A Network of Solutions” — or LENS-NC. The program aims to improve outcomes for students at the intersection of race, income, and learning differences. This article is part of a series introducing our readers to these nine organizations.
Bridging the gap between how a student with learning differences accesses education and how that student is taught at school is not easy. From beginning to end, the journey is filled with questions. Especially for parents.
Does my child have a learning difference? Does my child need to get tested? If so, how and when? And who can do it? What happens next?
Questions swim around in a sea of anxiety. And it doesn’t always become easier when your child qualifies for special education services.
“It’s not always easy to get your child appropriate services,” said Laura Weber, executive director for the Exceptional Children’s Assistance Center (ECAC) based in Davidson.
Providing coaching for parents and guardians to navigate special education services is the mission of ECAC.
“It is extremely rewarding work, and, at times, it is very difficult work,” she said, “because very few people call us because it’s a good day in the neighborhood.”
What ECAC does
ECAC fields calls from parents throughout the state who have questions about any learning differences. The nonprofit, funded primarily through federal law, supports students with all disabilities from birth to 26 years of age.
The past two years, most of the calls have been from parents whose children have autism. This year, the second-most have been about intellectual and developmental disabilities.
ECAC is not a legal organization that helps parents fight for rights. It isn’t a state agency that can help pair students with services, either.
“Our job is, really, to provide coaching and support,” Weber said. “We’re not lawyers, and we do not tell families what to do. We help walk them through their options and help build their capacity to do it themselves, because it’s going to be a lifelong process for them.”
In that endeavor, the team is well positioned. All but three staff members have navigated Exceptional Children services for their own kids.
“We work it, and we live it,” Weber said. “… You’re working here because you have a passion for this; even the three that don’t have children with disabilities have a passion for really helping to make a difference in families’ lives.”
The personal experience that staff members have with disability services is very much ECAC’s greatest strength. Sometimes a call will come into the office and there’s a quick answer. Most often, there aren’t easy answers — but there’s an understanding voice with experience.
“Just like with any child, for a child with a disability you’re going to have ebbs and flows,” said Karyn Montague, who is ECAC’s institutions of higher education coordinator. “And we get that, because we’ve lived that.
“Things can be really good, and then something’s going to hit the wall. And those parents know that they can always pick up the phone and call to get assistance wherever they are. I think that’s really special, and it’s a relationship.”
‘Like giving a family psychological air’
Assistance might look like connecting a student with resources. More often, though, it will look like reducing family anxiety.
“Sometimes, just knowing you’re talking to somebody that’s been there is like giving a family psychological air,” said Weber, as she takes a deep breath and lets it out. “They know we’re not thinking their kid is a bad kid, or their family is dysfunctional. They’re talking to somebody whose had the same experiences.”
In fact, some of the family members ECAC is helping might one day come to work for the organization. Most of the current staff started as family members seeking help.
ECAC further involves families by inviting young people, whether they’re receiving assistance or are the children of staff members, into a youth advisory team to help design projects, programs, and resources.
A recent emphasis has been on getting family and student stories out into the public. ECAC trains parents and students on how to effectively communicate their stories. They go into pre-service teacher classes and also sit with policy makers to connect abstract concepts about disabilities with real-world experience.
“When making policies, the vast majority of [policy makers] don’t have the lived experience,” Weber said. “So they don’t always know what they’re making policies about, nor do they always understand the unanticipated negative outcomes of policies. It’s not out of malfeasance or negligence; they just don’t have the lived experiences.”
Conversations and focus shift when policy makers and future teachers hear from families dealing with learning differences, Weber said.
“The talk changes,” she said. “It just does. If I’m talking about families and families are sitting there, what I say and how I say it could really change.”
While ECAC hopes these family stories will lead to more effective policies for students with learning differences, its primary goal is more immediate and tangible. It’s to focus on that psychological breath of air that a conversation between two parents facing the same challenges can provide.
“Not only are we assisting them to become better advocates for their children with disabilities, but they know it’s not just a one-stop shop,” Montague said. “They know that we’re going to meet them where they are and help them navigate the process as it goes along.
“We’re there as long as they need us, because you don’t just get over a challenge and it’s done. There’s always something that comes up.”