TAYLORSVILLE — When expecting parents learn that their child will be born with an intellectual or developmental disability, they usually go through a unique grieving process, Gerald Nebeker says.
The first thing the doctor will often ask, Nebeker said, is if the couple would like to terminate the pregnancy. They only hear about the hard facts and figures and other reasons why the diagnosis will make their lives hard.
That's one reason why in 2016 he started Orange Socks — a nonprofit organization and parent network that celebrates raising children with special needs.
The group's message, he said, is "If you choose to keep the child, this is what you might experience."
Orange Socks is an initiative under RISE, a nonprofit founded by Nebeker nearly 30 years earlier that provides services for people with disabilities. It seeks to inform expecting parents about a side of raising children with disabilities that they otherwise might not hear about: the "blessings" of raising a "little angel."
Since it formed, Orange Socks has expanded its focus to the parents of all children with intellectual and developmental disabilities, as Nebeker said most parents don't find out about the condition until after their child is born.
Nebeker said the grieving process for most parents in that situation can take some time but follows a similar pattern when they learn of their child's diagnosis.
"Why me? Why is this happening to me?" is the first reaction, he said.
Next, parents usually come to terms with it and think, "Why not me? I've got the resources, the support," he said.
And finally, he said most parents arrive at the stage where they think, "Thank God it's me."
For Nebeker, it took awhile to reach the final stage.
His youngest daughter, now 17, was also born with Down syndrome.
"It was probably at least two years before I could wrap my arms around it," he said, while his wife came to terms with their daughter's disability right away.
Brian and Terah Jones didn't know their daughter Indy, now 2 years old, had Down syndrome until shortly after she was born.
"I think everybody has their own timeline," Brian Jones said. "It took me, like, eight hours to wrap my head around it and I said, 'This is going to be us, and I'm going to own it.'"
Terah Jones said it took her about a year of highs and lows before fully accepting her situation.
In the hospital shortly after Indy's birth and diagnosis, she said she found encouragement by following social media accounts of families of children who also had Down syndrome.
"That gave me hope at the time," she said. She would think to herself, "OK, these kids are adorable. Their families are happy. They look like they're living a normal life. And it brought me so much comfort."
Brian Jones added that Orange Socks helps to give Down syndrome an "identity" for their family and gives them and other parents around the world a "home."
"It's a very lonely place when you get that diagnosis," Nebeker said. "The first person that you want to reach out to for comfort is not necessarily the well-meaning next-door neighbor or church member, but somebody who has walked that path before you."
Terah Jones connected with Orange Socks over social media when Indy was about 9 months old. Nebeker invited the Jones family to tell their story on his podcast, Inspiring life despite a diagnosis by Orange Socks, where he has now interviewed more than 100 families of children with disabilities.
Terah Jones said she continues to find hope and inspiration from the Orange Socks stories.
Orange Socks has also partnered with an international adoption agency to educate and encourage people to adopt children with disabilities.
In some parts of the world, Nebeker said, children born with disabilities are taken from the parents and put in institutions or orphanages, and are considered "unadoptable" in some cultures.
Nebeker's daughter, Rachelle Beagley, said many parents have no choice in the matter in those places.
"If you have a child that's diagnosed at birth, it's almost like you don't even have an option to keep that child," Beagley said.
Orange Socks works with the agency to encourage parents to adopt children in those situations.Comment on this story
Nebeker has found that almost every parent of disabled children that he has met say they would do it all over again. They say raising the child changed them and their whole families for the better.
Nebeker, Beagley and the Joneses all agreed that someone can't fully comprehend the amazing experience of raising an "angel" child until they've experienced it firsthand.
"Other people from the outside go, 'Oh, gosh, you're so strong' or 'I wouldn't be that strong,'" Nebeker said. "The reality is, you are. And to have that child is such a blessing that we want the world to understand that."