After consulting several doctors, they finally received a diagnosis: autism.
“I had never heard of autism outside of rain man“said Vines, referring to the blockbuster film released a few months earlier. “I had books, I went to the library, but I always felt lost – like I wasn’t a good mother. »
As Jason grew up, Vines had to deal with his frequent temper tantrums and the sometimes violent behavior that children with autism can exhibit. Her family moved from Chicago to Maywood, a small, predominantly black suburb, hoping there would be more services, but help lagged far behind that of wealthier communities. Vines says she desperately needed support.
“My whole life has revolved around finding services for Jason. To be able to get help, I had to take a train, a plane, a bus and a magic carpet to get there,” she said. “Several cocktails of drugs, changing doctors, changing hospitals. And most of the time I did it alone because my husband worked at night. I felt totally helpless. »
The support groups she found were in affluent communities. Not only was it difficult for her to get around without a car, but when she arrived, she felt out of place.
“I was the only black woman there, I was the only low-income person,” she said. “The women – they were great. They gave me resources. But they said, ‘They’re only $500.’ And I’m trying to figure out how I’m going to shop for next week. Imagine how I felt then – even more helpless.
Ultimately, Vines sought solace in drugs.
“I was a functional drug addict. I always kept lipstick on. I was still his mother. You always saw Jason with me everywhere I went,” she said. “I made things happen. »
She ended up in prison, and after finally abstaining in June 2005, she had found her mission.
“I made a vow that I wouldn’t want a parent to go through what I went through,” she said.
In 2007, Vines and her late husband, James Harlan, established The Response Inc., a nonprofit organization that supports families in underserved communities affected by autism. To date, Vines says the group has provided programs and counseling to more than 4,000 families in the Chicago area.
“Families always ask questions and we want to provide the answers,” she said. “I would say 95% of everything we provide is a blueprint of what I was missing as a parent. »
Many of these Vines supporters come from black and brown communities — a demographic known to face barriers in autism diagnosis and treatment. The CDC reports that black and Hispanic children are less likely to be identified with the disease, and Boston University researchers have found that black children are five times less likely to receive early intervention services than older children. white children – in part because of racial prejudice and cultural stigma. .
Vines is working to change that. Once children have been diagnosed, she helps connect families with the information and services they need, especially within the school system. Her organization also offers parent support groups, a 24-hour helpline and a host of activities for people affected by autism.
–
–
–
At the heart of the group’s programming are the free and low-cost classes held every Saturday at a local community center. These include tutoring, exercise, dancing, nutrition and even a social skills course for young women that covers topics such as relationships and sex education. Open to autistic people of all ages – as well as people with intellectual or developmental disabilities – these programs offer students a valuable opportunity to socialize while giving their caregivers a much-needed break.
It’s been a long road, but Vines is confident she’s found the right path.
“Jason has taken me places I never thought I’d go,” she said. “But (he) made me become a woman I never thought I would be. »
CNN’s Kathleen Toner spoke with Vines about her work. Below is an edited version of their conversation.
NC: Your organization has evolved to provide many services. How did it start?
Debra Vignes: My work started to mainly support mums because women want to be able to talk about what they are going through. We learn from each other, and having a child with special needs, we carry so much – having to deal with your child screaming or headbutting you, not being able to go anywhere because you can’t find anyone to watch your child, not be able to work.
Many parents with special needs don’t have many friends. It’s not that our friends don’t like us, but they stop calling us. So I wanted to tell my story so women wouldn’t fall down that rabbit hole I was in. I wanted to help them be the best for their child.
NC: Now you also support men.
Vines: Oh yes, men also come to our support groups, and we also have a group called “Just for Men”. It’s so funny because my late husband, he used to go with me to support groups, and then he started saying, “Where are the men? And so I said, “Well, why don’t you create a space for them? So he did! They went for nature walks, went to sports bars, went to games. And they ended up talking about their child and finding solutions for each other, so it was amazing.
NC: You also do a lot to educate the wider community about autism.
Vines: People are afraid of what they don’t understand. We have a lot of kids who don’t have great social skills, and with the growing number of autistic kids, we want to make sure the community is fully educated – churches, department stores, legislators. And there are so many things that have happened with the police with our special needs community. For example, Jason had a medication crisis where he was very, very violent. And I had to call the ambulance. The firefighters called the police. And they came with guns drawn. I tell them all the time, “There are no weapons. My son is autistic. They didn’t hear anything. So we want to make sure that first responders are trained, and I’m proud to say that almost every village in Proviso Township, Illinois has been trained in the signs and symptoms of autism. Advocacy is a gift. I’m good at it, and it makes me feel good. It’s my high now.
Want to get involved? Check Site Web de The Answer Inc. and see how to help you.
To donate to The Answer Inc. via GoFundMe, Click here
–
Not all news on the site expresses the views of the site, but we transmit this news automatically and translate it through programmatic technology on the site and not from a human editor.
