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Helping parents of kids with disabilities

Parenting might be the biggest responsibility and greatest challenge a person can take on. So, it’s no wonder parents and parents-to-be constantly look for resources and advice as they raise their little humans.  

Run a web search for parenting books and you’ll get over 80,000 results. But for Erica Ryder, an employee of Blue Cross and Blue Shield of North Carolina (Blue Cross NC), there was no book, no online community, no fellow parent she could turn to when her daughter was born 3 months early with multiple disabilities. 

On August 29, 1996, Ryder’s routine prenatal appointment quickly changed course when a technician found that her unborn baby was 3 weeks underdeveloped and Ryder had developed severe preeclampsia. Her blood pressure rose within a few hours to the level of a stroke, requiring Ryder to have an emergency C-section.  

Taryn Ryder entered the world, weighing only 1.5 pounds.  

“When I heard that, I thought, ‘That doesn’t compute,’” says Ryder. “She was no bigger than the size of my husband’s hand.”  

Isaac and Taryn in the NICU (neonatal intensive care unit) when she was just about a week old.

Taryn, who was in the hospital for the first 3 months of her life, was diagnosed with cerebral palsy, epilepsy, and developmental delays due to scarring on the base of her brain. Over 7 million Americans have intellectual and developmental disabilities (IDDs), which are disabilities and disorders – typically present at birth – that affect the nervous system, metabolism, and cell function. 

“Starting this journey is difficult and scary. It’s hard to understand. It’s hard to explain,” Ryder says. “My husband and I just had to learn this world that we got thrust into.” 

Champions for change

IDDs have existed for centuries, but access to resources – even recently – has been slim. Back in the late ‘90s, there were no online parent forums or local support groups for Ryder to join. Despite the Individuals with Disabilities Education Act (IDEA), a law passed in 1975 that made a “free and appropriate” public education available to children with disabilities, many school systems were still not properly outfitted with IDD teachers, classrooms, and processes.  

Parents, like Ryder, had to vehemently advocate for their children’s needs on their own. She and her husband, Isaac, constantly pushed for IDD resources as Taryn moved through the school system.  

“If there was nobody to speak up and be bold, then I did,” Ryder says. 

Ryder and Isaac had another daughter, Maya. Though 5 years younger than Taryn, Maya adored her older sister. When Taryn had seizures in the middle of the night, she would be the first to rush in, hold her, and reassure her that everything would be alright. 

“She would scurry around like a little squirrel helping her and I would tell her, ‘Maya, you’ve got to let Taryn do it on her own,’” Ryder says. “Taryn has always felt like there’s nothing she can’t do.”  

And Ryder has always supported that mindset.  

A source for support

In 2020, Ryder wrote My Sister’s Keyper, pouring 2 decades of research and therapies, setbacks and gains into a workbook for mothers of children with IDDs.  

“This has been our life,” Ryder says. “All of what we have learned – this cannot just be for us. I wanted to make it easier for other moms and let them know that even though it's hard, they're not alone.”  

Geneva Yourse, who volunteered alongside Ryder as a Sunday school teacher at church, looks to lessons in the workbook as she raises her own child with special needs. Yourse’s son, Ricky, lives with kidney disease, hydronephrosis, and a host of mental and behavioral health disorders. Her days with Ricky, though rewarding and joyful, can be taxing. She leans on Ryder for guidance. 

Geneva Yourse, a mother of a child with IDDs, pictured left, confides in Erica Ryder for advice and guidance.

At church, via phone, over coffee, and on walks, the 2 mothers have heart-to-heart conversations that only mothers of children with IDDs can.  

“She has seen all the emotions. She remembers what this looks and feels like,” Yourse says. “I'm going to listen to all the advice that she has because if she can help create two amazing girls with all of these things against her, then I'm sure she's got amazing things to tell me.”  

As an adult, Taryn joined Reality Ministries, where Ryder serves as a board member. The organization has many programs to support adults with and without IDDs, including housing.  

Taryn is 1 of about 200,000 North Carolinians living with IDDs, according to NC Department of Health and Human Services, many of whom hope to move into a supported community home. This environment encourages independence for residents, while live-in staff assist with their needs, provide structure, and foster social connections. Currently, the waitlist for community housing in North Carolina is 17,000 names long.  

In 2016, Isaac passed away. Always a protector and advocate, he wanted to see Taryn live in a supported community someday.  

“That was our goal. And not only ours, but Taryn’s,” Ryder says. 

Ryder’s cousin, John, donated funds to Reality Ministries in 2021 to build a home as an option for those on the waitlist. Another family donated the land on which the home is built. He named it “The Isaac House” in memory of Ryder’s husband.  

Aside from Ryder’s many volunteer efforts, she has worked for Blue Cross NC for 22 years, most recently in the Government Markets department. Each month, the department awards the Let’s Give Local grant to an organization nominated by an employee.  

“The goal of the grant is to serve our communities by hearing what our employees are passionate about and to develop a deeper understanding of what these causes are, how they work, and who they impact,” says Madison Turley, senior program manager at Blue Cross NC and a past manager of the Let’s Give Local program. “It’s a way to spotlight employees outside of our day-to-day roles and find out what makes them ‘tick.’” 

Ryder applied for the grant, saying in her submission, “I want to try to help make one small, but important dent. The Isaac House is my dent.”  

Erica Ryder regularly visits her daughter, Taryn, at The Isaac House, a community home for adults living with intellectual and developmental disabilities. Pictured left to right: Erica Ryder; Taryn Ryder; Mike Brogden, core resident; Adrian L’Esperance, in-home leader; and Lisa McKee, accompanying resident.

Reality Ministries received the $10,000 grant in March 2023, which supplied the home with living and dining room furniture, kitchen appliances, a washer, and a dryer. The impact of the grant left more than a dent. Taryn applied and was selected to live in The Isaac House, fulfilling her late father’s hopes and bringing her mother’s efforts full circle.  

The house hosted a grand opening in September 2023, attended by a crowd of supportive community members and many of Ryder’s Blue Cross NC colleagues. 

“Erica gave us a glimpse into her world and how Reality Ministries has changed her life and is bettering her daughter’s life,” Turley says. “She is fierce and strong, and you can see all the amazing change she is helping implement.” 

Fulfilling a dream

At 27 years old, just as her parents championed her, Taryn champions herself. She attends life skills classes every weekday and works at a coffee shop on the weekends. She enjoys walks with her housemates and neighbors, and, of course, visits from her sister and mother.  

“She’s my 'shero,'” Ryder says of her daughter, Taryn, who was born 3 months early and lives with IDDs. “She believes she can do anything she puts her mind to.”

Ryder’s tenacity has not only changed the course of Taryn’s life – it has inspired and encouraged the many parents who struggle with their children’s IDDs, who are filled with questions and need someone to show them how a hard diagnosis doesn’t take away from the joys of living.   

“I remember being in the hospital all those years ago and praying to God, ‘If you just let her live, I will forever tell her story,’” Ryder says. “And that’s what I’m doing.” 

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