Parents will do anything for their children. Some parents, by circumstance of illness or other challenge, go further, becoming activists who make a difference—for everyone.
When Eve Kessler’s son started school, there was little know-how for parents of special needs children about getting school services or available therapies. “This was 17 years ago, when few children in Wilton were diagnosed with autism. There was no place to fill this incredible hole of knowledge, and this hole in your heart. Knowledge wasn’t coming to you, you had to find it.”
A public defender with Legal Aid in Manhattan, Kessler knew research. “Another parent with an older child handed me her file and that’s where I started. I went to conferences around the country; I talked to experts, learning everything I could.” Meeting other families along the way, she saw she wasn’t alone. “People needed information tailored for their child and support—connecting with parents facing similar challenges. We started SPED*NET as a not-for-profit place for both.”
SPED*NET trailblazed for Wilton’s special needs families where there’d been nothing before. They authored a special services handbook that’s become the go-to resource distributed by school districts, including Wilton—“Bringing Knowledge to the Table: How to be an Effective Advocate for Your Child”—and published it online for free. They sponsored speakers, empowering parents to stand up for their children. News spread through Fairfield County, Westchester, New Jersey and beyond.
“We taught parents to advocate for their child and not rely on someone else. That thing about put your oxygen mask on first—you are the oxygen mask. If you’re not taking care of yourself, you can’t take care of your kid. If you’re not, no one else will.” SPED*NET continues as the resource for families desperate for information. “Seventeen years later, there are always parents in this ‘new’ situation,” says Kessler.
Jeff and Kristy Snyder faced a different “new” situation when their 12-year-old daughter, Kennedy, was diagnosed with spinal cord tumors at age two. They started the CORD Foundation after learning medical research into her rare cancer was grossly underfunded. “We took matters into our own hands, not to teach people, but to save Kennedy’s life,” explains Jeff, raising more than $1.8 million.
Jeff’s business is event marketing; he raises money the same way he makes a living—creating events to get people participating through fun. He spearheaded Wilton’s “Million Mile Run” team for pediatric cancer in September, raising $60,000 in one month. “Creating fun activities—scavenger hunts, poker tournaments—people feel helpless and want to help; it’s easier to jump onboard and have fun doing it. I design something so people not only open their hearts, but also open their wallets.”
Maryann Lombardi opens doors—literally and figuratively—on behalf of children with developmental disabilities, like her son Gianni. She became a fierce advocate in Hartford and DC against restraint and seclusion rooms in schools after discovering Gianni was regularly locked in a small room at school without her knowledge. She was instrumental in passing state law protecting children against punitive use of such methods, and advocated for legislation in Washington.
Now that Gianni is 22, Lombardi promotes creating independent living situations for adults with special needs. “Parents aren’t encouraged early enough to start planning. We think about college when typical kids start school, but when a child is profoundly disabled, we take a ‘wait-and-see’ approach, because we don’t know what’s next.”
She encourages parents to take initiative. “State Sen. Toni Boucher said to think, ‘What can we do to help the state to move forward?’ not, ‘What can we get from the state?’ I took that seriously. We needed to put our money where our mouth is. My husband and I did—we bought the house on our corner, renovated it, and made it a home for young adults with developmental disabilities.”
Lombardi hopes other families do the same, even though, she laughs, “It wasn’t easy! On top of renovating a house, you’re dealing with governments—local, state and federal. In Wilton—the building department, planning and zoning, health department, fire marshal; in the state, inspections for the rent subsidy program; the federal government has a role, because Medicaid pays for programming and support once the house is finished. It’s one step at a time—if you look at the whole thing, you’d go, ‘Oh God, I could never do that!’” Wilton, she adds, was great. “Everybody at Town Hall really wanted to help.”
Lombardi was vice-chair of the State Council on Developmental Disabilities, and lectured about creative housing for a “Partners in Policymaking” class at UConn’s Center for Excellence. Making her individual experience work almost universally is the secret to her successful brand of activism. “My son is every child. Whatever I’m doing for him benefits every child.”