While the thought of raising two children with special needs would launch many parents into an emotional tailspin, Jackie Schilling refuses to waste time asking “Why me?” Instead, she focuses on providing the best lives possible for her three kids: 17-year-old Nicholas, 6-year-old Kiersten and 3-year-old Ethan. Both Nicholas and Ethan have serious but unique special needs, and while Jackie is candid about the challenges their care poses, she makes it a point to concentrate on the things that make her kids – and parenting them – special. “If there was a prayer or a chant I could say to make them normal, then I would,” she says. “But this is the life they’ve been given. It didn’t happen to me; it happened to them. It’s my job to help advocate for them and make sure they have what they need so they can stay healthy.”
Jackie has been playing the role of advocate since Nicholas was an infant. She knew something was amiss when her newborn had trouble feeding and consistently failed to meet developmental milestones. Initially, Nicholas was diagnosed with cerebral palsy; he later received the additional diagnoses of autism, intellectual disability, seizure disorder and scoliosis.
Following her divorce from Nicholas’ father (who is active in the boy’s life), Jackie left her Portland home for Dallas in search of better opportunities for her and her son. In an effort to understand Nicholas better, she decided to pursue a degree in speech language pathology at the University of Texas at Dallas. Jackie graduated and began a career in special education, but in an unexpected turn of events she also found love. When Nicholas was placed in Josh Schilling’s first-grade class, Jackie felt an instant connection with the teacher. The feeling was mutual, and they started dating seriously within two years and married not long after.
Josh and Jackie soon welcomed Kiersten, and it wasn’t long before they began talking about having one more child. While Josh was eager to add to the Schilling brood, Jackie was hesitant. Ultimately, it was a documentary on the plight of siblings of individuals with autism that swayed her. She was worried about the pressures that might fall on Kiersten in later years, fearing that her daughter would feel burdened by the responsibility of being her big brother’s keeper.
Extensive testing revealed that Nicholas’ conditions had no genetic links and Kiersten was completely typical, so Jackie says she and Josh felt confident that they wouldn’t “produce another child with disabilities.” Jackie was thrilled when she found out she was pregnant with Ethan, but it wasn’t long after his birth that Ethan showed evidence of health issues. Like his brother, Ethan is nonverbal and requires a G-tube. But the similarities end there. Ethan has had brain surgery and testing continues, with many of his issues remaining undiagnosed, but so far he’s been diagnosed with severe ichthyosis vulgaris, a thickening of the skin that prevents sweating and can lead to dangerous overheating; hypotonia, causing poor muscle tone; dysphasia, which affects swallowing; and Charcot-Marie-Tooth disease, a neurological disorder affecting motor and sensory nerves. To further complicate matters, the 3-year-old also has severe allergies, reactive airway disease and has to be accompanied by an aide at all times as he’s prone to frequent falls. “He could fall anytime, and it could be serious,” Jackie says. “He could choke on a Goldfish and end up with pneumonia. You have to be cautious. You don’t know when you’re going to find him with a broken bone.”
While Jackie was well-versed in life as a parent to a child with special needs before Ethan, she says being mom to two children with special needs has been a game-changer. Josh works full-time in special education administration and as president and executive director of HEROES Program, a nonprofit that provides community activities and experiences for individuals with special needs. With Josh working two jobs, Jackie is left to see to the boys’ rotating therapy sessions and seemingly endless slate of appointments with a combined 14 doctors across Dallas.
Jackie says she also has to be careful to provide Kiersten with the individual attention she craves. She has no doubt that the first-grader cares deeply for her brothers and understands the gravity of her brothers’ conditions, but being sandwiched between two brothers with extensive needs has been difficult. “She understands that [death] isn’t just for grandmas and grandpas,” Jackie says. “It happens to kids too.”
Recently, Nicholas’ health has been in steep decline and his future is uncertain, but Jackie pushes along, abiding by a schedule and staying calm in the face of adversity. Jackie doesn’t think there’s anything especially unusual about her strength. She says she’s simply “built up a tolerance” like everyone does to their respective points of stress.
Nicholas’ and Ethan’s extensive care and jam-packed schedules aren’t conducive to a nine-to-five, so Jackie left work shortly after Ethan’s birth. She starts each day by doling out the boys’ prescription cocktails before seeing them off to school. In the few free hours she has before the boys return home for doctors’ appointments and therapy sessions, she likes to put her creative juices to work by coming up with special projects for the kids or making something for the house. She’s still a teacher at heart and hopes to return to work someday. She also looks forward to the day when alone time with her husband (who calls Jackie “the glue that holds the family together”) isn’t a rare treat. But for now, she says they’re doing OK. “We remind each other that we love each other,” she says. “We’re committed, and we’ll seek each other on the other end.”
While others in their position might question where they went wrong, Jackie refuses even to entertain such thoughts. She also scoffs at the notion that “God only gives special children to special people.” “I don’t think God is up there saying, ‘Those Schillings are awesome! Let’s give them a double dose,’” she says.
Something went wrong in the boys’ development. Jackie says it’s as simple – and as complicated – as that. “It didn’t matter what I did in my pregnancy. If something bad was going to happen, it did. God can give us the strength to get through, but I don’t think he did it to us.”
For Jackie, the fact that she continues to live and thrive, even on the most trying of days, is a source of pride. She counts it one of her greatest achievements that she’s learned to be happy and to enjoy her children for who they are. “I think I should be proud of myself,” she says, “because a lot of people would quit. It’s just what we do.”
Published November 2013
