(Debra Vines,55, with her son Jason Harlan, 26. Photo courtesy of Debra Vines).
Monday, August 18, 2014 || By Michael Romain
Updated: August 19, 2014
FOREST PARK — Every morning that he wakes up, Jason Harlan, 26, says his name and smiles. His mother, Debra Vines, 55, says that this genuineness is one of the principal joys of raising Harlan, who was diagnosed as an infant with low-functioning, non-verbal autism, a developmental disorder that affects a person’s socialization and behavior. The spectrum of cases ranges from mild to severe. Symptoms in an infant include an inability to make eye contact, inexplicable babbling, unusual emotional isolation and extremely aggressive behavior. The technical medical symptoms, however, don’t cover the deeper ones–such as unconditional love.
“Jason doesn’t just give me a hug because he’s manipulating me to get some gym shoes,” Vines said. “The love is so real. He doesn’t know the pains of the world, because he doesn’t age. Jason is always happy, unless I’m unhappy. He doesn’t know anything is wrong with him; in fact, he probably thinks everything is wrong with everyone else! But he does feed off my emotions, so I try to keep a happy face all the time.”
But maintaining that happy face hasn’t always been easy considering the challenges and sacrifices of raising an autistic child — from the financial burden it places on parents to the emotional drain it causes, often times from the strained finances.
“Think about how much it costs to raise a normal child,” Vines said. “Now double that, especially if you’re trying to do it the right way. Right now, Jason is 26 and we just paid for him to take drum lessons. For recreational services alone, we spend about $600 per month, just to make him better at everything else he does. A lot of doctors don’t accept Medicaid for extra therapies, so we pay out of pocket. A lot marriages break up, because of the stress level and money issues. My husband and I didn’t go on a date for like eight years. We just recently found somebody good enough to leave him with. But we can’t just get out and do things like normal people do.”
The mountain of challenges, albeit intermingled with those unique joys, is what motivated Vines to found an organization in 2007 dedicated to helping parents in her position who are often bewildered by the complex of decisions and questions involved in raising a developmentally disabled child. Naturally, she called it The Answer, Incorporated.
“I just didn’t want any other families to go through what I went through,” Vines said from her office inside of Living Word Christian Center’s Joseph School of Business in Forest Park. “Our organization holds the family’s hand throughout the entire journey. For instance, when I was calling a lot of agencies for Jason, I would get a recording. Our families are going through enough–from the shame to the blame to feeling guilty–they don’t want to be on hold all day. They don’t know you can just Google a lot of this information. They’re dealing with so much already.”
Since the organization’s founding, The Answer, Inc., has grown to reach about 1,000 families a year in Proviso Township and beyond through various support groups, advocacy programs and events. Vines hosts a TV show on CAN TV once a month; regularly refers families to partner entities, such as Loyola University Medical Center and Proviso Leyden Council for Community Action (PLCCA), as part of her ongoing role as resident case worker; directs the planning of the organization’s annual Autism Walk, which raises funds to send participants, aging 7 to 50, to horseback riding camp for a week through a program sponsored, in part, by Special Camps.org; and is working on the implementation of an Autism & Special Needs Resource Center to open soon at the Broadview Library.
She does all of this, for the most part, alone, working full-time with limited funding, but seemingly unlimited motivation. The present magnitude of her work, however, wasn’t exactly inevitable.
“All of that just started with a support group,” said Vines, who with her husband moved to the western suburbs from Chicago when Jason was three years old, so that he could enroll in Proviso-Area Exceptional Child (PAEC).
“I never thought it would get to this level, but it’s went from support to advocacy to recreation. When we throw our events, we make them feel like rock stars. We do three dances a year and the kids look forward to them. The community knows that if they call us, they’ll get an answer to their question and if we can’t give it to them immediately, we’re going to find it eventually,” she said.
Perhaps one of the most important services her organization offers to parents is its persistent dismantling of the stigma associated with autism and other disabilities, such as down syndrome and ADD, similar to it. Vines said that many disabled children are often vulnerable to bullying and scams. She said that this is natural with greater exposure to the outside world. Jason, for instance, aged out of PAEC when he was 22, leaving the responsibility for his care and monitoring almost squarely on the shoulders of his parents. Vines and her husband were able to provide the kind of care their son needed, but other parents aren’t as fortunate.
Day programs for adults with disabilities can cost as much as $100 a day, money that most parents Vines works with don’t have–leaving them with a tragic choice between not working to care for their adult kids or leaving the kids to practically raise themselves.
“We had a baby boom of children who aged out of school in the last couple of years,” Vines said. “A lot of them are able to walk around, but they’re targets for bullying and manipulation. Just last week, one of my students got conned out of his ATM card. If they’re not in a day program when their parents have to work, it’s back to zero. A lot of families have gone homeless, because they have to stay at home with the kids.”
So Vines decided that if her kids couldn’t find complete shelter from the world, The Answer would have to try and make the world ready for them. Her organization has conducted bullying prevention at Proviso East, first responder training catered to individuals with developmental disabilities with area fire and police departments, and has even developed a YouTube documentary on anti-bullying called STOPP (Students Opposing Peer Pressure).
“If you’re not aware of something and don’t see something often, then you become afraid of it. There’s a lack of awareness and education in our community,” she said. “
This year, The Answer partnered with PLCCA to provide summer employment to individuals, ages 16 to 24, with developmental disabilities, with 40 percent of that program’s hires comprising disabled persons. The program’s funding was made possible by the advocacy of State Sen. Kimberly Lightford.
“A lot of our children can’t just go out and get a job. Some of them still can’t even count change from a dollar, but they can pick up a box and stack it,” Vines said.
In addition to the jobs program, The Answer has partnered with State Sen. Kimberly Lightford and the Black Star Project to provide educational and functional training to disabled students. The organization also provides instruction in areas such as healthy cooking, dance and music.
Vines’s husband also has a group called Just for Men, in which 15 to 20 fathers of developmentally disabled children get together once a month to bond and come to grips with the initial shame and disappointment with the burden of raising such a child–disappointment that Vines said ultimately turns into appreciation.
Since 2007, her life’s passion has grown to encompass about 15 parent ambassadors who actively promote awareness and understanding about developmental disabilities throughout the community; three interns who help Vines out during the summer; and a burgeoning young ambassadors club that is currently in the works. It will comprise student ambassadors from Proviso East, Proviso Math and Science Academy and St. Joseph’s Academy, who will promote awareness about disabilities among their peers. Vines believes that changing the thinking of youth, whose minds are still being molded and whose prejudices haven’t yet settled in, will only become that much more important as the diagnoses increase.
“There are a lot of people who don’t have children, but who are still directly impacted by developmental disabilities,” she said. “At some point in time you’re either going to have a neighbor or a distant cousin or somebody close to you diagnosed. The latest number for the Center for Disease Control is 1 in 68 people with autism. So, we’re adamant about getting information out there about who we are, where we are and how we can help.” VFP
For more information on The Answer Inc., or to purchase tickets to the organization’s upcoming fundraising gala on September 14, click here.