Parents of Special Needs Children Find Support at Project Enlightenment
Date: April 22, 2012
When her son, Samuel, was a toddler, Kirsten Reberg-Horton says she realized he had some "pretty significant problems." For instance, he had a habit of deliberately banging himself into walls.
"What in the world in going on here," she remembers thinking. "We would call it 'pinging.' He would 'ping' from one side of the house to the other side of the house. He would run and just slam himself into one door, and run and slam himself into another door."
Worried, she took him to his pediatrician, who said Samuel could get tested at Project Enlightenment, an early childhood education and intervention program of the Wake County Public School System. After an evaluation at Project Enlightenment's office in downtown Raleigh, a psychiatrist and teacher there recommended Samuel receive occupational therapy and be evaluated by a psychologist, possibly for autism. She says those two staff members shone a light on where she and her husband, Chris, could find help for Samuel, who eventually was diagnosed with autism, sensory integration disorder, attention deficit hyperactivity disorder and obsessive compulsive disorder.
"They were the beginning of us getting more targeted help for our son," Kirsten says of that first visit to Project Enlightenment in 2008. "I knew something was wrong, but we didn't know what, and we really didn't know what to do about it. So, having people who were just there and ready to help us, it was actually pretty amazing."
Samuel went on to receive occupation therapy, and he was accepted to attend preschool for 4-year-olds at Project Enlightenment, where teachers are trained to help with his disorders.
Created in 1969, Project Enlightenment serves children from birth through kindergarten, with the goal of equipping them to be successful once they enter school. The program is unique in the U.S. because of the array of developmental services it offers children and because its main focus is to educate adults—particularly teachers and parents—who touch the lives of young children, says Cynthia Chamblee, director of Project Enlightenment. "We call it a ripple effect," she says.
The program has two preschool classrooms for 4-year-olds that are designed as observation areas, where teachers from across Wake County learn best practices they then carry back to their own classrooms. If a parent and a teacher request help, Project Enlightenment's consultants can also head into Wake County classrooms to develop strategies for specific children. Staffers also pay home visits to show parents activities they can do to promote a child's development. And parents can go to Project Enlightenment's office for short-term counseling to help with a specific issue their child is experiencing. Project Enlightenment also has a lending library filled with resources for teachers and parents of children with special needs.
For Kirsten, having Samuel in Project Enlightenment's preschool with other children who had identified developmental issues was a life-changing experience for her family on many levels, she says. Previously, Samuel had attended several preschools, a difficult experience that always led to the preschool staff getting so frustrated by his unusual behavior that she and Chris would eventually pull him out of school. At Project Enlightenment, Samuel was able to stay until kindergarten.
When Samuel reached kindergarten age, Kim Hughes, Project Enlightenment teacher, went with Kirsten and Chris to their first meeting at the school he planned to attend and advocated for him to be mainstreamed into a classroom while bringing the staff up to speed on Samuel's background. (Photo, at right, of Kirsten and Samuel sledding, was taken in 2011)
"Basically, she did lots of upfront education to help them understand who he was and what he was going to need," Kirsten said, recalling that the school allowed Samuel to gradually increase his hours of attendance so he could adjust to a new environment and schedule. "The school took him really seriously and right away came up with a plan."
While Samuel was attending Project Enlightenment's preschool, his parents were also learning. They met with a counselor there who recommended books to read. They attended group sessions with other parents. They learned positive parenting, how to react to specific behaviors that Samuel might exhibit and why he was behaving that way. They discovered that Samuel was banging into walls because he was seeking sensory stimulation and that hugging him or giving him heavy tasks, like carrying a heavy laundry basket, would calm him down by making contact with his muscles.
But understanding came from many sources, Kirsten says. "Being able to meet and talk with other parents [at Project Enlightenment] who were struggling with different things with their children, who weren't pretending that everything was OK and were willing to talk about it finally made us feel that we were not just out here by ourselves doing this crazy thing. There are other people doing this. It was very supportive."
That support lifted her out of isolation and a feeling of guilt, she says. "The biggest thing for me was going to a place where people weren't judging me as a parent, were willing to help me and who could help me find answers for my son," she says. "It was like a light turning on, a door opening, when we got to Project Enlightenment. I don't know what we would have done as a family without them."
She offers this advice to parents whose children are struggling with special needs and who wonder if having them diagnosed and "labeled" with a disorder has merit. "If you don't get them labeled with what is really going on, they are just going to be labeled a 'discipline problem,'" she says. "And if they are labeled a 'discipline problem,' those teachers are not going to fight for them in the same way.
"I didn't want my kid labeled a discipline problem. I knew his spirit, I knew his soul. I knew he didn't want to be a problem, that there was something else going on. They [parents] have to believe in their kid and find out what it is."
Now 7 years old, Samuel still attends the same school he entered as a kindergartner. At his side in the classroom is an aide assigned to work with him and help him pay attention in class and conform to behavior requirements. Like every child, he has his ups and downs at school, and his parents are along for the ride, rough or gentle. "The thing about Samuel is that, even though he has all of these struggles, he has an extremely high IQ. So, he is completely capable of learning standard material," Kirsten says.
Project Enlightenment to Host Family Fun Festival April 28
Project Enlightenment, an early childhood program of the Wake County Public School System, will host a family fun spring festival from 10 a.m. to 1 p.m. Saturday, April 28, at its headquarters, at 501 S. Boylan Ave., in Raleigh.
The festival, dubbed Project Palooza, will feature a children's parade, the local folk-rock band Milagro Saints, balloon art, face painting, kids' yoga, craft making, family games, story time with the Bookmobile and a special appearance by the Wake County Fire Department. A fund-raiser for Project Enlightenment, the festival will also offer food provided by Pullen Park Café for purchase, with profits benefiting the Project Enlightenment Foundation.
In recent years, Project Enlightenment has been hit by funding cuts and has had to reduce the size of its staff and, subsequently, the number of children and families it serves. In the 2008-09 school year, Project Enlightenment received $1,070,456 in grant funding, but that figure dropped to $563,627 for the 2011-12 school year. In the 2008-09 school year, the nonprofit served 2,100 children and 1,900 families, but in 2010-11, it served 1,900 children and 1,700 families.
Even as funding has dropped, the need to help children has grown, says Cynthia Chamblee, director of Project Enlightenment. She says the nonprofit is seeing young children with more "substantial" needs, particularly in social/emotional developmental areas, than in previous years. In order for these children to be successful, they need access to appropriate interventions, she says.
"Our goal is to support children and families and teachers so when children enter the public school system, they have the development needed to be successful," she says. "Being successful in school means they will be successful in life. This is a lifelong journey."
-- Written by Odile Fredericks, Carolina Parent Web Editor
Carolina Parent's Special Kids publication, is a family's guide to special needs resources in the Triangle, available in print and online. Visit our digital Special Kids guide here.