Aspyn Schnetter is pumped about graduation.
The Senior High student will don a cap and gown this May and walk across the stage. She’ll leave behind a remarkable high school experience — four-year cheerleader, homecoming queen, one of the most popular girls in school.
What she’s walking toward is a little less clear.
Aspyn has Down syndrome, a chromosomal disorder that can cause physical and cognitive disabilities. She survived a series of heart surgeries as a toddler and blossomed at Senior, where her hugs are famous.
“She’s just like a little ray of sunshine,” said librarian and cheerleading coach Shaundel Krumheuer.
Aspyn's got the graduation date memorized: May 28. No doubt there will be copious hugs. But the date also represents the end of school-based services for Aspyn, and the end of a social structure in which she’s made hundreds of friends.
For as many strides as Aspyn has made socially, academic success has been elusive. Her speech is a work in progress, as she’s difficult to understand at times.
Her family is making plans for activities and work to help give her opportunities to continue to grow, balancing independence with support — and Aspyn has already come a long way.
'She was so tiny'
Aspyn was born in Libby, the first child of Kristy and Bob Schnetter, who were 19 and 20 at the time. Prenatal screenings can reveal an increased chance that a fetus has Down syndrome, and genetic testing is almost always accurate. But the Schnetters had no clue their child had Down syndrome “until they handed her to me.”
“That was like the first thought that went through my head, and I was like ‘no,’” said Kristy. Testing confirmed the diagnosis. “That was quite a shock.”
“We had so many people sending us articles and information and books, it got to be overwhelming,” she said.
Eight months after Aspyn's birth, the family moved to Billings, where Kristy's parents live. The family worked with several groups for occupational and speech therapy.
Children with Down syndrome have low muscle tone and struggle with motor skills to varying degrees. Aspyn had to learn to hold her head up as a toddler. Her parents went through routines, moving her arms and legs through motions. She worked on jaw movements — “stuff we don’t even think about,” Kristy said.
Medical problems peaked when Aspyn was 2 and Kristy was pregnant with Aspyn's younger brother, Danyel. Many children with Down syndrome have heart defects that require surgery, and the Schnetters went to a Seattle hospital for treatment. After her first surgery, Aspyn developed a life-threatening staph infection. She had two more surgeries in the next two months.
“She was so tiny," Kristy said.
“She would blow kisses to the nurses, even when she was half out of it," Bob said.
The night before the third open heart surgery, doctors didn't expect Aspyn to survive.
Kristy signed forms releasing the hospital of responsibility if Aspyn died in surgery.
“It was the worst thing for a parent.”
Aspyn pulled through, and the artificial heart valve she received hasn’t caused any recent health problems. She also got a best friend out of the trip.
On Wednesdays, Apsyn teams up with Alyssa Ahlgren to collect recycling from second-floor classrooms. Alyssa pushes a trash cart while Aspyn retrieves and dumps out smaller boxes from classrooms.
Alyssa also has Down syndrome. Her family met the Schnetters in Seattle, and they have remained close friends for “a long time,” as Alyssa said.
The duo are only partners once a week, as they have a tendency to collapse into giggles between each classroom. They hug when they see each other for the day.
The students work with teacher Jana Vigesaa at school and also volunteer at Billings Health and Rehabilitation.
“She was fabulous from day one,” Vigesaa said about Aspyn. Vigesaa focuses on helping students develop skills to work independently, and Aspyn is something of a worker bee.
She’s focused and attentive to detail. She fills ice to exactly the same level in dozens of water carafes at the health center, adding water to each with zero spills. She is diligent about wiping each corner of the table when clearing dishes. While Vigesaa tells other students collecting recycling at school to stay on task, Aspyn is rarely distracted.
At the health center, she chats with patients and has impeccable manners.
“She never gets tired or complains or needs a break,” Vigesaa said. “That’s just sort of her way of life.”
Aspyn started in School District 2 at the Career Center preschool, where she was known to turn her hugs into accidental tackles. It’s something that educators, specialists and family have worked on; she now usually offers a handshake or high-five upon meeting someone, though a hug is typically soon to follow.
She attended several different elementary schools, as the district sometimes rotates special education classrooms. Life skills progress was a major part of her education.
“Tying her shoe (in middle school) was a huge accomplishment,” Kristy said. “It’s hard to believe. For us, it’s like you learn that in kindergarten.”
It took her a long time to adjust to disruptions. When Aspyn was younger, she thought that school vacation days meant that her parents were keeping her home to punish her, despite their explanations. She now enjoys the days off.
When she began high school, even the most constructive of criticism was likely to result in tears. Crying is now rare, Vigesaa said.
Learning skills progresses students toward independence, which can mean different things for different students. For some, it’s the ability to regulate their emotions. For others, it means holding a steady job and living on their own.
In a recent class, Aspyn and other students divvied up the tasks of making waffles. Some measured milk and powdered mix. Some cracked eggs. Others stirred.
“She just loves food,” Kristy said. “We’re letting her cook a little more (at home). She likes the end result. She feels proud that she did it herself. … She really wants that independence.”
Bob is remodeling the back half of their home, creating more isolated rooms for Aspyn and Danyel, her younger brother. The Schnetters considered buying the next-door house when it was recently for sale, but decided against it. They want to keep Aspyn home, at least for now.
'A constant battle'
Planning the next steps for graduating students with special needs is challenging. June Hermanson leads Montana Youth Transitions, a Helena-based program that helps families design plans for children with special needs as they become adults with special needs.
“We’ve got over 17,000 high school students with disabilities in this state,” she said.
Hermanson emphasizes communication between parents and young adults early on, and urges families to aim high.
She frequently uses the example of a student who wants to become a pilot, but may lack the academic skills.
“Maybe you can’t be a pilot, but what other jobs could you do in an airport?” she said.
For Aspyn, the dream is to attend Montana State University. She knows other students who graduated and went on to college there and has cousins who played on the football team.
But the academic burden of college and the level of independence it requires likely haven’t sunk in, Kristy said. Her parents are talking to officials at Rocky Mountain College about enrolling her in a class and participating in cheerleading.
Even if that comes through, it’s thorny to negotiate. Aspyn would likely have some sort of aide in class. Kristy may fill that role, as she’d likely be the one to help Aspyn with any additional assignments.
“Do I want to do that? Then that’s taking away her independence, because that’s when 'Mom’s with me,'” she said.
It’s a very personal issue for the Schnetters, especially Kristy, who has been involved with every aspect of Aspyn’s education and therapies through the years.
“I know, in my care, she’ll be taken care of, she’s safe,” she said. “(But) you don’t want to hold them back, either."
Vigesaa credited the Schnetters with providing strong support for Aspyn.
“That’s, I think, why Aspyn does so well,” she said.
Hermanson, who hasn’t worked with the Schnetters, often talks to families about the right to fail, to let young adults experience their own mistakes. But families also have to consider consequences.
Kristy has thought about letting Aspyn ride the bus alone, potentially as transportation to a job. But Aspyn’s social, friendly nature doesn’t have an off switch. Kristy worries that, in an unsupervised scenario, “she may just go with anyone.”
Kristy was especially nervous as Aspyn started cheerleading, but it’s worked out well. Aspyn’s teammates watch out for her, and Aspyn has thrived in the program. During warm-ups, she never misses her cues to kick and memorizes most of the routines. She doesn’t take part in stunts, but is otherwise a full participant.
“Once you have a routine established, she’s very concrete,” said Krumheuer, the cheerleading coach.
Morgan Emond is a junior cheerleader and one of Aspyn’s best friends on the team. She and Aspyn usually chat at school before practice.
“I feel like Aspyn always comes to me with her ‘big news,’” Emond said. “She tells me about her everyday life, dinner, the night before.”
Emond also volunteers with Special Olympics, where Aspyn participates in gymnastics, track and dance; at one recent event, Emond delivered flowers to Aspyn as she received a medal. Emond plans to pursue a career teaching in special education.
In school, students see other kids with disabilities, and that’s the concept that sticks with people, she said. There’s simply less exposure to adults with disabilities.
“I think (people) think of children and students, younger people. They are adults too, they grow up, they have a life after school.”
Bob recalls talking with Kristy shortly after Aspyn’s birth, wondering about the future.
They had friends in Libby whose family had adopted and raised a boy with Down syndrome. He was well-known in the community and relatively independent. He gave the new parents an example to strive for.
“The day we had her, we weren’t sure how things were gonna work out, to planning her graduation party... 18 years have flown by,” he said.
Krumheuer, the cheerleading coach, said Aspyn has come to embody the school she attends.
“She’s an ambassador,” Krumheuer said. “She’s an ambassador for kids with special needs, she’s an ambassador for Senior High. She’s an ambassador for the community.”
That role was never more prominent than when she was crowned homecoming queen this fall.
Aspyn's goal moving forward is to improve her speech. She continues to work with a private therapist.
“When we have to have her repeat things, she’s like ‘ugh,’” Kristy said.
The family hopes to have Aspyn continue work at the health center after graduation, and she plans to continue participating in Special Olympics.
If she can communicate better, it would remove the biggest thing holding back her independence, Bob said.
And she'll be able to tell her own story.