I met 13-year-old Zoe Silvey when she answered the front door of her home. Zoe didn’t look directly at me, but stared past my left shoulder, then said something I couldn’t quite understand and turned away.
Zoe has autism.
When Zoe was 4 ½, she was “completely non-verbal and almost catatonic,” says her mom, Shelley Pereda Camp. Shelley moved to Asheville as a single mom of two in 2000. Zoe had been diagnosed with autism early, at about 16 months old, and her father left the family soon after.
While supporting a family member with autism is a full-time, often life-long challenge, Zoe’s come a long way. She’s grown from a toddler who spent most of her day sitting in a corner rubbing her lip to a kid who loves the Jonas Brothers and wants to be a rock star or a horse trainer when she grows up. Shelley’s goals for Zoe are those of any parent. She wants Zoe to develop into a happy, healthy, independent adult. “Independent” is a key word for children with autism.
“Autism is not like other developmental disabilities because with the right support and resources and training, children with autism can grow up to be independent,” Shelley says.
That’s where organizations like the Autism Society of North Carolina can make a huge difference.
Zoe lives in North Asheville with her mom, stepdad, older brother and baby sister. Also part of her family is Sam Eraway, who spends 25-30 hours per week teaching and working with Zoe one-on-one. Sam was hired by the Autism Society specifically for Zoe.
“When I first went to the Autism Society, I was desperate for help,” Shelley says.
She credits the society’s advocates with helping her navigate the school system’s services as well as the process of applying for Medicaid for Zoe. Although Zoe fits the criteria for Medicaid services, she initially was denied for more than four years.
“The Autism Society was amazing. A parent advocate would attend every meeting with me that concerned Zoe. And they helped me find emergency funding for support services until Zoe finally qualified for Medicaid,” she says.
Zoe attended school at Jones Elementary in the classroom for students with disabilities. Now she’s home-schooled by Sam, Shelley, and stepdad Ferris Camp. Shelley also works as a Web manager from home while managing Zoe’s care and schooling (and her other two kids). Although Zoe’s old enough for middle school, Shelley says developmentally and academically she’s at a third grade-level. But Shelley says Zoe’s completed two grade levels in the past year at home, thanks in part to the curriculum the Autism Society helped find for her.
She’s also had the consistency of Sam, who has worked with her for three and a half years. Sam’s helped Zoe and her family create systems that support Zoe’s independence. She’s organized Zoe’s room with laminated cards showing drawings and words of what goes in which drawers. Zoe has instructions on her bathroom mirror that help her remember to brush her teeth and hair and wash her face.
One way to support the Autism Society and the families they in turn support is to participate in this weekend’s Run/Walk for Autism. The event takes place from 9 a.m. to noon on Saturday, Sept. 19, at Carrier Park. Folks can show up and hang out for free or run/walk for $25. All money raised will help the Society support WNC families with autism in crisis and the Society’s group homes. It will also help fund Blue Ridge Bags, a small business owned by the Society that employs adults with autism. As is the case with many non-profits, funding has decreased during the recession, so every donation makes a difference.
“I hope Zoe will be able to go to college one day. I’m not expecting it, but I hope it happens. I hope that one day she’ll fall in love and call me and say, ‘Mom, I met this guy and he’s in a rock band and he’s so cute,” Shelley says.
By the time I was ready to leave Zoe’s house, she’d become more relaxed around me. She walked up to me, looked me in the eye, and gave me a huge smile. She said, “Nice to meet you, Anne.”
“It was so nice to meet you, Zoe,” I said. And it was.
Anne Fitten “Edgy Mama” Glenn writes about a number of subjects, including parenting, at www.edgymama.com.