Local creates nonprofit helping parents of kids with brain disorders

Editor's note: This is the first in a four-part series looking at mental health services in Cabarrus County.

When Gwen Bartley first came to Cabarrus County, she was treading water with nowhere to turn.

Her two newly adopted children suffered not only from a traumatic past but also severe brain disorders, and she found herself trying to navigate the mental health world all on her own.

"When I arrived here, I was new to the area and new to having children with special needs," Bartley said. "It really took me a full 10 years of really just going on a hamster wheel of I can't get help, I don't know what to do. The services we got were inappropriate, nothing was helping, and the kids meanwhile were snowballing into worst case scenario."

So Bartley decided to take action. She needed help and she needed it fast, and the only way that was going to happen was to take matters into her own hands.

"I finally just said, you know what, there's no one here to help me," she said. "I've got to help myself."

And so Amazing Grace Advocacy was born. Bartley began networking with resources and other families in the area, gathering information and support, before finally forming the nonprofit officially in 2013.

With an executive board featuring parents of children with brain disorders, exceptional children teachers and others in the mental health community, Bartley said the nonprofit acts as an information center and support center for families trying to navigate the dicey waters of the brain disorder world.

"If there's other organizations that work with mental health, that work with autism, that work with intellectual disabilities in this area-and thery're all fantastic-we like to think of ourselves as the hub of all of those organizations," she said. "A family can come to us, and we can say we can offer you this, but there are other specialized organizations that can really help you in certain areas, and we collaborate and refer all the time. We don't try and reinvent the wheel. We just try and be that hub."

But the nonprofit does offer a host of services, as well, focusing not only on children with brain disorders but those with significant trauma. Bartley said brain disorders cover a whole range of issues, from autism and intellectual disabilities to Down syndrome and cerebral palsy.

Childhood trauma can include foster care, international adoption, abuse or neglect.

"There's a significant impact on their brain development," Bartley said. "It's long lasting, and they need assistance, as well."

Support group

One of the services Amazing Grace Advocacy offers is a family support group. Parents can bring all of their children-those affected by a brain disorder and those not-for a communal get-together. Sometimes Bartley will arrange a guest speaker, other times the families will just hang out.

"We bring in people from the school system," she said. "We bring in health insurance roficers, just a little bit of everything. So we're touching on everything for the families."

Including the entire in the evening remains an important piece of the puzzle for Bartley, who said typical siblings often get forgotten.

"What typically happens is you have a child that gets a lot of attention because they're special needs," she said. "So the parents' focus is really always on this kid because they're high level of care, and if the child goes into crisis, then you're talking about running back and forth from the hospital. So it's all this focus goes on, and these other typical siblings are left to be like, 'Hey.' "

Sometimes these children can have trouble in school, both academically and behaviouraly, as a result, trying to get attention.

"It's really important to brign those siblings in and have them connect with kids in the same boat nad say we get it; we know how hard it can be," Bartley said. "We bring everyone together because we feel like it's really important for there not to always be a separation, building a feeling of we're in this together, and it's OK."

Teen group

That being said, Amazing Grace Advocacy does offer a group that focuses just on teens ages 12 to 21. That club meets every six to eight weeks to not only give the older special needs children an outlet but also to help teach them life skills.

"Sometimes we just get together and have fun, and they're just being teenagers and having the opportunity to be social with one another, hang out," Bartley said. "Then we also have certain meetings where we will make products. And we teach them how to start from your basic doing something on your own, becoming a sole proprietor and working out of your home and how they can have an Internet-based business."

Products range from greeting cards to lawn services, and adult leaders walk the kids through production, quality control, marketing and sales. The group sets up an online store and a summer sale, with the teens themselves operating checkout.

"The point with it is that the kids that we're working with are kids with really severe disabilities," Bartley said. "Some of them are non-verbal with autism. Some of them have very serious mental illness. So they can't go to a lot of these traditional work programs for youth with special needs because the social anxiety or just not being able to be verbal really limits them. They still however can have an income, and it is so important that they decide what hteir purpose is, what they want to do with their life."

Other services

One of the most useful things Amazing Grace Advocacy offers parents is a directory updated constantly with a comprehensive list of local resources. It includes therapists, psychiatrists and community services and is free online.

An online guidebook also helps give parents an overview of managing a child with mental illness-how to get started, how to get diagnosed and how to stay organized.

Workshops every six weeks also help with that self-education, and Bartley said she runs the brain disorders 101 class every so often to refresh or catch any new members. Workshops cover topics ranging from health insurance to school accommodations, helping people navigate the system and addressing any questions they may have.

"To me it's very hopeful because the majority of the kids that we work with, if they're treated and their parents know how to maange them through the teen eyars and then transition them into adulthood, they can live very fruitful lives," Bartley said. "That's really important for people to understand. [My children] are my drive, my purpose. Our motto is life has a purpose, and we feel really strongly about that, and that purpose is going to be different for everybody, and to take each one of these children individually and say OK, this is what you've got, this is the cards we were dealt, but that's OK.

"Even if it's like my son; he will likely remain in either a facility or a group home because that is the environment that he thrives in the best. But that's OK because we can figure out within that environment how can we make his life awesome."