Support for special needs

Antonia Smith experienced a host of feelings when she learned she would be having a baby with Down syndrome—being overwhelmed was one of them. Immediately, though, she felt a strong need to connect with other parents who’d experienced the same thing.

“I wanted to learn as much as I could about it right away,” Smith said in a recent interview. “I’m a ‘researcher’—it’s just in my personality. … I wanted to be proactive. Parenting can be difficult, and with a diagnosis on top of that—it’s overwhelming.”

Today, Smith’s daughter, Ayla, is a busy, bright-eyed 17-month-old, thanks in part to the support that Antonia and her husband, chiropractor Shane Smith, have gotten from Rowell Family Empowerment of Northern California.

Smith, a stay-at-home mother, acknowledged that she’s grateful to have her own strong family-support network. “Most of them live out of town, but when I shared this with them, they were glad to offer support. Some of them want to learn sign language to have a better relationship with [Ayla]. They’re very proactive in that respect.”

But she has found additional support with Rowell’s programs. Shortly after Ayla’s diagnosis, Smith did a simple Google search for resources for parents of children with disabilities, and Rowell was the first organization that popped up. “[Rowell Program Manager] Theresa [Pineda] was the first person I talked to. She asked me what kind of services I was interested in, and sent me a pamphlet on Down,” Smith said. “The hospital didn’t give me anything, so I was on my own to do research.”

Shortly thereafter, Smith signed up for Rowell’s class on setting up and maintaining a medical home binder. The large, physical notebook is used to collect and keep organized all the paperwork involved in a child’s condition. It includes communication logs, worksheets for doctors’ visits, checklists and questions to ask.

Pineda said families can personalize the binders to fit their needs. “Like much of what we do here, we encourage people to make it their own,” she said recently. “Keeping the binder is key. It avoids repeating things, like unnecessary blood tests.”

Smith said her relationship with Rowell sort of “snowballed” after that, when Pineda asked her to lead a support group. Smith’s daughter was just 6 months old. “I thought, ‘No, that’s not really my thing,’ at first,” Smith said. “But I did it. We started with just five families, and some come in and out. But it’s really spread.” In conjunction with The ARC of Butte County, Smith continues to coordinate “Parent Meetups” for families of children with Down syndrome (see column note).

These days, Smith stays busy with Ayla and her 5-year-old son, Gannon, and she is expecting a third child in January. She is one of the thousands of families Rowell has assisted, via offices based in Redding and Chico, since its inception in 1995. Rowell’s many services include advocacy and seeking out resources for parents of children with disabilities.

Kat Lowrance, Rowell executive director, said the majority of her 18-person staff consists of parents of children with disabilities. Lowrance herself has a grown son who is deaf. “There’s a unique parent-to-parent connection. When you have a child with a disability, you can understand it from an intrinsic place—all the joys and frustrations you go through,” she said. “Parents like to talk about issues that are specific to what they’re going through, and have already been through. There’s a lot to be learned.”

Lowrance likes to think of the agency’s role as being a partner with parents, “to give parents a voice and support their goals for the highest outcomes for their children. Our motto is ‘Everyone belongs.’ No matter why people call, they never get ‘dissed’ here. We will research, and get back to them, so we have somewhere to send them if we can’t help them. That can be critical to a family’s survival—sometimes they’re homeless, or can’t pay their electric bill. We try to find answers for people. We keep a lot of resources at our fingertips we can pull from.”

Rowell is named for the late Debbie Rowell, who started the organization. Frustrated with unsuccessful attempts to locate services for her special-needs child, she organized other parents with children with disabilities, and obtained funding to start what was then called the Exceptional Family Support, Education and Advocacy agency. Rowell died unexpectedly in 2002 at the age of 43, and the agency was renamed to honor her courage, tenacity and goals.

The organization is funded by IDEA—the Individuals with Disabilities Education Act—and grants from the U.S. Department of Education. Rowell sends speakers out to give presentations about its work, and the agency accepts financial donations, which are tax-deductible.

“Most people say, ‘I didn’t know you were here,’” Pineda said, adding that getting the word out to reach more parents in need is a goal.

The organization’s Cohasset Road office houses a conference room, children’s play room, and a lending library of educational books and CDs in both English and Spanish. Support for families is offered by telephone and email, as well as face-to-face.

While all of Rowell’s services are offered at no charge to families, some services for professionals—such as if, say, a psychologist wants 20 copies of a particular booklet or pamphlet—have an administrative cost.

“They’re enormously positive people,” Smith said of the Rowell staff. “They’ve always answered my questions, or guided me to the right people. I’m very happy to be involved with them. They’ve made a big difference.”