LUMBERTON — Eli Parker is like any other 2-year-old. He loves to play with his brother, sister and Thomas the Tank Engine toy.
But according to his mother, Sonya Parker, Eli was born with a little “something extra.”
Eli is one of about 10,000 people under the age of 21 with special needs in Robeson County, according to a recent survey by the Innovative Approaches Initiative — and Parker says living with Down syndrome is anything but a disability for her active, social tot.
“A lot of people say ‘I’m sorry.’ They’re saying ‘I’m sorry it’s not what you expected’ but my response is don’t be sorry, I’m blessed,” Parker said. “Down syndrome has opened my eyes to things I didn’t see before.”
Parker says instead of being grieved for, people with Down syndrome should be celebrated, especially today, World Down Syndrome Awareness Day.
The day falls each year on March 21 because Down syndrome is caused by a third replication of the 21st chromosome.
Parker learned her son might have that replication — and a heart defect where all four chambers were connected — when she was five months pregnant.
“I didn’t do any of the testing to determine a definitive diagnosis. I didn’t need that I didn’t want that. I was having a baby,” Parker said.
Eli was born and had successful heart surgery in March 2012.
Now, he loves to play with his 10-year-old sister, Ruby, and 12-year-old brother, Aaron. He’s learning sign language, and so are Parker and her husband.
“He’s happy all the time — he wakes up happy, he doesn’t get sad. He’s a very social person, he loves people,” Parker said.
That’s what she hopes others take away from this year’s Down Syndrome Awareness Day.
“Eli is perfectly normal, there’s nothing wrong with him. He was born with something extra that makes him extra special and extra lovable,” she said.
Parker said she also hopes the day opens other people’s eyes to the resources that are available in Robeson County — and the ones she says the county desperately needs, especially in rural areas like her town of Bethesda, which is near Fairmont.
She’s even created an email account — firstname.lastname@example.org — where anyone interested in learning about resources or coordinating events or support groups for children with special needs and their families can reach her. The email stands for “I am Down Right Awesome,” Parker said.
“Early intervention is key. I think the reason that Eli is doing so well is because I accepted the services that were offered to us and recommended to us through the Children’s Developmental Services Agency,” she said. The agency’s nearest office is in Fayetteville.
Although the Public Schools of Robeson County has two occupational therapists on staff, for children Eli’s age, the service is hard to come by. Instead, Eli did play-therapy, which is available in the county, to refine his motor and cognitive skills.
The Innovative Approaches Initiative, part of the Robeson County Health Department, is working with families of children with special needs and local agencies to bring more resources to the county.
Dozens of families have gotten involved in the program by joining a support group, attending special events and helping its organizers identify what resources the county is lacking, according to April Oxendine, the program coordinator. Seventy families attended their Christmas social.
“We have quite a few kids with Down syndrome, in fact our oldest and youngest have Down syndrome,” she said. The program defines “special needs” as any health care need lasting 12 months or longer — from allergies to autism.
Oxendine said the support group has provided those two families, and others, with someone who has been through what they are going through. They can talk about where to find therapy, how to transition from a pediatrician to an adult doctor and what rights their child with special needs has.
The program is working with the county Board of Commissioners to put together a week-long “summer playground” — sort of a day camp complete with craft-time and field trips to the movies.
“With some of our kids, they don’t go to the movies because it can be overstimulating with all the people around them,” Oxendine said. “On the trip they can get up because theatre will be reserved just for them.”
The program is working to implement as much as it can before its three-year grant ends in 2016. A steering committee for those policies is made up of 26 parents and representatives from the school system, the Department of Public Safety, the Department of Social Services and more, Oxendine said.
“System changes take while. They may not happen within six months they may not happen in a year, but I look at what we have already brought to the community with awareness, with having that number of 10,000 kids … that’s an eye opener right there,” she said.