It’s been about a year since I joined the board for Raising Special Kids, a 38-year-old nonprofit that provides parent-to-parent support for families navigating disabilities and special healthcare needs in children from birth to age 26.
As a rare board member who doesn’t have a child with special needs, I’m learning a lot. The most impactful lessons come from hanging around these amazing volunteers, many of whom have experienced more than their fair share of life challenges but somehow manage to show up and scrape together a little more energy to support this organization that does so much to ease the way for others.
When Karin Smith was installed as board president a few months ago, I learned her leadership was just the latest step in her family’s long and pivotal role in this organization — and part of a deeper family culture emphasizing community outreach.
Karin’s dad, Chuck Smith, was one of the early board members for this organization, then a grassroots effort known as Pilot Parents. For several years, he also served as its board president.
More than three decades ago, when Chuck and his wife Nancy learned their daughter Courtney had cerebral palsy, they knew just where to turn. Their neighbor, Betsy Trombino, was one of the founding members of Pilot Parents. The group often met around her kitchen table.
Betsy’s son Mark is a little person, and Chuck was inspired by her determined advocacy for her son. He wanted to be that kind of parent for Courtney, whose physical and intellectual disabilities would require lifelong support and care.
“At that time, 30 or so years ago, there was nothing available to train parents,” Chuck says. He and Nancy got involved, learning communication and advocacy skills. They, too, began mentoring parents plunged into uncertainty because of a child’s diagnosis.
Sometimes Karin, who was then in elementary school, would tag along, though she usually ran off to play with Betsy’s daughter Lynn. Karin later participated in a Pilot Parent sibling support group.
I ask if it was difficult growing up with a sister who needed so much care and parental attention — a sister with whom she couldn’t even have a conversation.
“There were conversations,” she tells me gently, with the insight of a lifetime spent observing others’ misperceptions about her sister. Karin and her siblings learned to read Courtney’s every tone and pitch, even a squawking sound they playfully call her “pterodactyl cry.”
“She’s non-verbal, but she makes noises, she grabs you,” Karin says. “You can tell how she’s feeling based on her pull, or based on her cry.”
Karin had seven other siblings, so what she mostly remembers about growing up is that their household was busy. “There was always babysitting going on, always carpooling going on, always something being done for someone — Courtney just needed a little more of that,” she says.
Chuck and Nancy ran their family with lots of love and structure. All of the kids pitched in to help with everything from washing dishes and fixing lunches to bathing Courtney. In many ways, having a daughter with profound needs “brought our family closer,” Chuck says. “She was the magnet.”
Karin’s path seemed destined toward increased involvement in the special needs community. After struggling in her freshman year at the University of Arizona, she discovered she had a learning disability caused by an auditory processing disorder. She found support at U of A’s Strategic Alternative Learning Techniques (SALT) Center. After graduation, she went on to earn three master’s degrees — one at each of Arizona’s universities.
After seeing a documentary about a special-needs orphanage in Greece, she spent five summers working there, and the months in between recruiting money, supplies and more volunteers. Now a consultant for the Phoenix firm of Heinfeld Meech, Karin works to strengthen business practices at local school districts. She has embraced her volunteer work with Raising Special Kids, and the opportunity it has given her to “give back to this organization that provided so much to our family.”
“Giving back” is a phrase you hear a lot from both Karin and Chuck. “Incredibly blessed” is another one. They seek the positive, whether they’re talking about Courtney (who now lives in an adult group home), or Nancy’s breast cancer (she’s a 22-year survivor) or the wrenching tragedy their family endured two years ago, when the Smiths’ son Ryan and their daughter-in-law Katie were killed in a car accident, leaving three young children without their parents.
Chuck recently sold the trucking business that supported his family for so many years and had barely tipped his toe in the waters of retirement before he was recruited to serve as interim director at United Cerebral Palsy of Arizona, another organization that has been important to his family and for which he has boundless enthusiasm.
“I have been so incredibly blessed with my wife, my family, my kids,” says Chuck. “I owe it to him [he looks toward the sky], and to everyone else, to pay it back.”