Madeline Seward has two copies of a picture from the St. Louis Post-Dispatch. It captures the trip she and other Variety St. Louis Adventure Camp participants took to the Museum at the Gateway Arch in June 2018, before it opened to the public. She keeps one copy with her at Rockwood South Middle
and the other in a scrapbook under her bed.
In it, she’s interacting with one of her counselors, Madison, and a museum exhibit, and she’s grinning from ear to ear. When she sees the picture, she replicates that smile and excitedly uses one of the phrases she has to verbally communicate: “Oh yeah!”
“She enjoyed it,” said her nurse, Genie Nutter, who spends 12 hours a day at school and home with Madeline four days a week. “She’s smiling and participating. She loves Madison and the experiences with Variety.”
Madeline, a seventh-grader at Rockwood South, is a wheelchair user who has difficulties controlling her motor functions, the result of a severe acquired brain injury four years ago. She also loves her family, playing pranks, arts and crafts and her classmates, who always make a point to say ‘hi’ to her in the hallway and offer to help push her wheelchair. She even loves Starbucks and going out to eat, like many fellow seventh-graders.
She is a Rockwood School District student living with a disability, but that’s far from the only way to define her.
“She is the kindest and happiest person ever,” said her mother, Amanda Seward. “She is everybody’s friend. She is kind of a magnet for kids, and everyone is really wonderful to her. The kids genuinely, really get attached to her.”
Madeline was born with optic nerve hypoplasia that left her visually impaired and a form of cerebral palsy that resulted in muscle weakness on her left side. In 2015, while she was battling the flu, her family couldn’t wake her from a nap. Madeline, then a second-grader at Stanton Elementary
, spent the next six months in the hospital with brain swelling.
When she got out, she could no longer walk or talk.
“She couldn’t even really hold her head up, do anything with her hands, no form of communication,” Amanda said. “It was a pretty significant difference, and they weren’t sure if she would ever regain anything. But she’s done great. We have the best-case scenario with her support system: schools, nurses, family, outside therapy. She even surprises her doctors.”
“It made all the other hard stuff look really insignificant,” Madeline’s father, Jonathan, added. “It really brought some clarity and perspective to life.”
Madeline’s school communities have rallied around her. She had great support from Principal Dr. Christy Starnes, teachers and other families while at Stanton. When she made the transition from elementary to middle school, Rockwood South Principal Dr. Laurie Birkenmeier sat in on her first Individualized Education Program (IEP) meeting, and the Special School District teachers at the school have worked with the family to provide an enriching educational experience for Madeline. She recently got a perfect score on a meteorology test.
Her support structure at home has also been critical to her success. That includes her parents and her three siblings: fifth-grader Lillian, second-grader Bennett and kindergartener Logan, all of whom attend Stanton. It also includes the family’s soft-coated Wheaten terrier, Annie, who has been with Madeline nearly her whole life.
When Madeline came home from the hospital in 2015, Annie started sleeping under her bed. Annie also makes sure to conduct a thorough inspection on each new nurse that comes into Madeline’s orbit.
“That protector mode, we see that in her siblings, too,” Amanda said. “This has made them even more accepting of others. I don’t think they see things the same way other kids look at them. They immediately think of inclusion versus what’s different.”
Madeline has regained the ability to say a few words – including “mom,” “dad,” "hi," "bye," "yes," "no," and “blue and orange,” her current favorite colors – and has spent the past couple of years working with an augmentative and alternative communication device built into her wheelchair. She pushes buttons on the chair with her head to select phrases from a library that she helped create, then speakers play the phrase so others can hear.
She has even started to stand again, and she’s working on walking with assistance.
“She can be easily underestimated,” Amanda said. “Anybody who’s worked with her knows that the reason she’s come as far as she has is because we don’t underestimate her. You can’t judge based on appearance.”