Couple with spina bifida finds family despite adoption barriers
Spina bifida is a condition where the spinal column and casing around the spinal cord don't form completely, affecting motor ability and the ability to walk. Before 1960, the survival rate for babies with spina bifida was about 10%. Even as medical science improved, some still viewed the diagnosis as a death sentence.
Both Kelly and Larry went on to live happy childhoods and, in high school, the pair started dating. Today, they reminisce about the days when they had to pay for phone minutes and their parents would warn them to watch their phone usage.
"We always, we just kind of got along really easily," Larry Peterson said.
The couple married in 2015 and, within six months, began discussing adoption. However, they quickly encountered barriers that highlighted ongoing discrimination against people with disabilities.
"We actually came across an agency who flat out said, 'No, we have a list of disabilities that we don't work with potential adoptive parents, if they have X, Y, and Z conditions and spina bifida is on that list,'" Kelly Peterson said.
This month marks the 35th anniversary of the Americans with Disabilities Act, which prohibits discrimination against Americans with disabilities. The law requires businesses like restaurants, hotels and grocery stores to provide people with disabilities equal opportunities to access goods and services. But in practice, when it comes to services like adoption, equal access is not always guaranteed.
The rejection was disheartening, but the Petersons understood the agencies' concerns about liability and whether adoptive families could handle the challenges ahead.
Eventually, one organization agreed to help, changing everything for the family. While browsing the agency's website, Kelly spotted a little girl with spina bifida.
"As I'm on the website, I see a little girl with spina bifida and I was like, 'how do we miss this?!'" the couple said in unison.
That little girl was Hadley, who became the Petersons' daughter in December 2018.
"It was love at first sight," Larry Peterson said.
Like many children with spina bifida, Hadley also has other conditions, including autism and a speech disorder. The Petersons regularly bring Hadley to therapy and the library to help her build independence.
The couple believes their shared experience with spina bifida makes them uniquely suited to care for Hadley's complex needs.
"We've been through it. I mean, we've been through pretty much everything you could go through with the disability we have," Larry Peterson said.
"I remember being a kid and thinking when adults would tell me, 'This is good for you,' how do you know you haven't been through it? With her, we'll be able to say we've been there," Kelly Peterson said.
Jennifer Kelly, an adoption specialist who works with children with severe medical needs and helps prospective parents with disabilities adopt, matched the Peterson family. She emphasizes that adults with disabilities shouldn't be automatically discounted as adoptive parents.
"Adults with disabilities, they have considered those challenges," Jennifer Kelly said. "Maybe they have a couple of weak spots, but we can put some resources in place that can help with that."
The Petersons were thoughtful about their limitations, acknowledging there were some children they felt they couldn't adequately care for. Their house is already modified specifically for Hadley's needs.
One of the family's biggest concerns was cost. Kelly is a teacher and Larry works at a call center, and medical bills can be expensive. Jennifer Kelly didn't just match the family with Hadley; she also helped them secure federal benefits available to families raising children with severe medical needs.
Shriners Hospitals for Children have also alleviated the financial burden on the Petersons by covering the costs of Hadley's medical procedures, some of which would normally cost tens of thousands of dollars.
The family now worries about how potential cuts to Medicaid will impact their ability to provide Hadley with what she needs in the future.
"She is my world. I can't imagine her not being here," Larry Peterson said.
"We couldn't be happier to have this opportunity," Kelly Peterson added.
When asked if they might become grandparents one day, both Larry and Kelly responded in unison: "Anything is possible!"
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