Chuck and Nancy Smith began supporting Raising Special Kids (then known as Pilot Parents) more than 30 years ago because a close friend was involved with the organization. The Smiths had no idea when they donated the group’s first computer that their lives and the organization would be entwined indefinitely.
In 1984, Nancy gave birth to the couple’s second set of twins, a pair of girls who brought the number of children to eight. Within a few months of the girls’ arrival, Nancy, a nurse, suspected something was wrong with one of the girls. Their daughter Courtney was first diagnosed with cerebral palsy, then later with severe cognitive disabilities. Chuck and Nancy both agree that when their daughter was young, things were much easier.
“But as Courtney began to grow up,” said Chuck, “that’s when Raising Special Kids made a huge impact.” The Smiths relied on Raising Special Kids to help them learn all they could about understanding and navigating the special education system, Courtney’s rights, and the Individual Education Plan process.
They decided early on that they wanted Courtney to have the fullest life possible and they wanted her to be visible in their community, so they enrolled her in their neighborhood elementary school, where her brothers and sisters attended class. Armed with the knowledge and information acquired from Raising Special Kids, they worked with the school on an IEP for the first year. “Raising Special Kids helped make us secure in knowing what was right for Courtney,” said Chuck. “They also helped us manage our expectations,” Nancy added. The school, Chuck remembers, seemed surprised that Courtney did not come with a book of instructions.
After Courtney’s first year at the neighborhood school, the administration wanted to move her to a self-contained classroom at a distant elementary school until she could develop language skills. “They didn’t seem to understand that Courtney was never going to talk,” said Nancy. The issue had reached the point of Due Process with ensuing litigation when the Smiths attended Courtney’s second IEP meeting.
When the Smiths arrived for the meeting, they found 12 school administrators, special education experts and a psychologist. Chuck took one look at the room, squeezed Nancy’s hand and stated “This isn’t a fair fight, they don’t have a chance.” Said Nancy, “Raising Special Kids gave us the education and confidence we needed to effectively argue our case.”
Courtney attended a neighboring elementary school; she remained in a typical classroom, with an aide, and continued to be part of the community.
As Courtney got older, Chuck and Nancy, and their children, became advocates for people with special needs, volunteering for Raising Special Kids; serving on state boards and giving presentations at workshops and conferences. Chuck was a Raising Special Kids Board member for seven years, serving as Board Chairman for two years.
The Smiths remain staunch supporters and advocates, giving generously of their time, treasure and talents to ensure other families have access to Raising Special Kids and the same chance to achieve the best possible outcomes for their children with special health needs.