The odds are great that anyone who has met Debra Vines has also met her son, Jason. Whether at the grocery store or rubbing elbows with legislators and public officials, Vines, 51, likes to make a point of involving her 22-year-old autistic son. It’s good for him, she says – and it’s a teaching moment for everyone else.
Since September 2007, Vines has committed herself to advocating for families and children with autism and other disabilities. The Answer Inc. is a referral agency she started after coming to the realization that raising an autistic child has given her a wealth of experience and know-how. Just weeks ago, Vines moved her one-woman show into a small office at The Joseph Center for Business Development, a business incubator run by Living Word Christian Center in Forest Park.
Though she already has an extensive network of social service groups, doctors, lawmakers and parents at her fingertips, Vines is hoping to eventually launch her non-profit into a full-service agency that can offer counseling and respite services.
“I think this is something I was put on this earth to do,” Vines said of her advocacy work.
Vines and her husband, James Harlan, moved to Forest Park just a few years ago when they became frustrated by gaps in the social services available in nearby communities. By law, schooling for autistic individuals must be provided up to the age of 22. But once that milestone is reached, it is up to parents to find – or provide – care for an autistic adult who may require round the clock attention.
“After 22, boom, you’re dropped off,” Joseph Mengoni, vice president of adult residential services and case management for Seguin Services, said.
Jason recently began participating in daytime services at Seguin, where Mengoni has worked for more than two decades. Because of Jason’s age, Vines was left scrambling to find some type of programming for her son and is waiting to hear if state funding will help pay the costs. According to Mengoni, life after public education can be extremely taxing for families with autistic children.
“For the rest of his life, he’s going to need someone to tell him the difference between right and wrong and to help recognize dangerous situations,” Mengoni said of Jason’s autism.
Forest Park is served by a bevy of organizations, such as Seguin and West Suburban Special Recreation Association, and Vines has made strong connections with those groups. Sandy Gbur, executive director of WSSRA, met Vines several years ago when Jason enrolled in different programs. Gbur has since been a guest speaker at monthly meetings Vines hosts at the community center in Forest Park for parents of children with disabilities.
“I love Debra because she’s a go-getter,” Gbur said. “She also has been very willing to get educated.”
Vines lacks the formal training of Gbur and others who’ve chosen this field as a career, but her aim isn’t for The Answer to become a family’s destination. Parents with questions about where to turn for help for their child can get a better sense of direction from Vines. Medical specialists, niche programming and even a sympathetic ear are some of the needs The Answer can help meet. Vines and her husband both facilitate monthly meetings where parents can better connect with different services, and with other parents in similar situations.
“I don’t claim to know everything, but if I don’t know it, I’ll find it,” Vines said.
Vines is also willing to go with parents to their child’s school to review how educators plan to address specific needs. She’ll serve as an advocate or simply offer support. From experience, Vines said it can be extremely difficult to hear someone say bluntly that your child won’t ever develop a strong intellect.
“I think you’ll get the emotional connection with Debra because she lives it everyday,” Gbur said. “The bottom line is this is a job for me. It’s a lifestyle for her.”
Her son was diagnosed with autism at the age of 18 months, said Vines, after she and her husband found him sitting silently, rocking back and forth in his crib. It was a devastating diagnosis and took James Harlan years to accept. Their marriage suffered as they both became emotionally isolated. Vines admits she became resentful of her in-laws, too, because they behaved “like Jason had the plague.” Her passion for advocacy and assimilation came after she realized it was up to her to help make others more comfortable with autism.
“If the Lord closed my eyes today, I would be a happy woman because I helped somebody,” Vines said.
