Quality of life: Community support increases accessibility for Incline Village high schooler
Nearly two years after Bryan Behren, 17, received a successful spinal fusion surgery at Stanford, his caretakers finally possess the time and tools to return the teenager to the slopes of Alpine Meadows.
“The TetraSki was designed for significant disabilities,” mother Norah Behrens said, referring to a wheelchair with a joystick made for veterans, those with limb differences and even paralysis. The state of the art sporting equipment enhances Bryan’s life, but only if his family can get out of the driveway.
Bryan is the oldest of three siblings, the children of Nora and Scott Behren. According to Nora Behren, the couple moved to the region in 2000 after completing the Appalachian Trail together.
Four years later, the Behrens gave birth to their first son. Bryan suffered from a perinatal stroke after he was born, Behren said, and the brown-eyed boy has lived with cerebral palsy and epilepsy ever since.
“It presents challenges sometimes,” Nora Behren said.
The mother of three said the family has been a beneficiary of local resources, including early intervention and special education, where he was “fully included in Incline schools.”
“He’s had IEP his whole life,” Nora Behren said, referring to the state-backed, collaborative effort of district administrators and educators to nuance academic goals set for disabled students via Individual Education Programs.
Behren said her son started to receive at-home education during his recovery from back fusion surgery at Stanford University over the last year and a half. The resources her family has leaned on during her son’s life made them well acquainted with available public services and servers.
“We know the system,” Behren said, adding that aside from the public supports offered to those with disabilities — including funded feeding supplies — Bryan is enrolled in Medicaid as well as her husband’s insurance.
“We get most things handled for him,” Behren said, adding, “but when it comes to vans, it’s not that easy to get funding for.”
Behren said those with disabilities can get assistance for the conversion, but they still have to purchase the vehicle on their own.
“There aren’t really any four-wheel drive options that aren’t massive and cost $100,000,” Behren said.
The family raised thousands of dollars more than their original fundraising goal. With the excess cash, the Behrens will invest in snow tires and chains for the vehicle. Behren said she may still opt to lift Bryan into the SUV in case of an emergency.
Behren registered the van last week after purchasing the used, rear-entry wheelchair-accessible 2016 Ford Transit van for $36,000 from a Sacramento-based family off Craigslist. The Behrens reported that over the course of their fundraiser’s active period, they received the support of 130 different donors with gifts ranging from $15 to $4,000. The total collected via GoFundMe was $30,800, Behren said, but the family started with a $10,000 gift and the extra will go to car insurance, Behren said.
The 6-year-old vehicle with 46,000 miles on it has a ramp, Behren said.
“When he has a ramp and tie downs in the back, there’s no lifting,” Behren said. “He just gets in the chair in the house and stays in the chair. That’s something my mom can (handle).”
Behren said Bryan can use the transit wheelchair as if he were on a school bus.
Bryan weighs about 60 pounds, Behren said. Nora and Scott are able to load and unload their son from their 2007 Ford Explorer in a seat Bryan uses as both a pedestrian and a passenger. The adaptive car seat was specially designed by mechanical engineering students at University of Nevada Reno, Behren said.
The chair changed the family’s life, Behren said, allowing them access to Lake Tahoe’s beach front. Bryan has accessed some breathtaking views of the region in the special-made chair, but the biggest challenge between Point A and Point B proved to be the house to the car.
“We’re an active family,” Behren said. “We like to go to the beach, (…) we’ve taken the chair hiking. It can go a lot of places — it can’t go everywhere.”
Behren said she is able to lift the combined weight of her son and his chair — 70 pounds — in and out of their Explorer in good conditions. Her 72-year-old mother, who shares responsibility for Bryan’s care, did not share the same sense of security and would have been unable to move her child into their previous vehicle in case of an emergency.
“A lot of people without mobility disability don’t understand the challenges,” Behren said.
Behren said her nonverbal son’s seizure disorder makes him unable to care for himself — he is nonverbal and tube-fed — but that means her mother is confined at whatever location she offers care for Bryan.
“My mom can’t leave the house,” Behren said. “… she can’t even load the car and go to Raley’s without the van. The transit’s ramp is really lightweight — it’s something our 70-plus-year-old parents can do.”
Behren said her son’s condition has given her both gratitude and a deeper empathy in her life.
“I don’t think people understand the limiting nature with the way things are set up,” Behren said.
The van’s convenience has the potential to improve quality of life, Behren said, but “in our country, you don’t just get a van because you have a wheelchair and need to get to the grocery store.”
Behren said her family has had to get creative to find other sources of support. In that way, Behren said the van’s gift emphasizes both the challenges and blessings Bryan’s life has brought to the family.
“I have a friend in Reno with a kid with disabilities who does not have a van, but she does have a back problems. She either has to put herself at risk or wait for her husband — those are her options,” Behren said.
Behren said the family has not only received support from the government, but help from friends as well over the course of their son’s upbringing.
Bryan has traveled abroad to Machu Picchu for the wedding of a friend and former employee of the Behren’s pizza shop. Their “rather large Serbian friends” carried their son’s wheelchair up the 15th century Inca citadel steps, despite the local authority’s denial of wheelchair access.
Behren said her son smiles and talks — “not with words.”
“He vocalizes,” Behren said, adding that he likes to hear stories that his grandmother reads to him and music that his father plays for him. “He can use his eye gaze to express what he knows.”
Nora said Bryan is getting “real credit” and will receive an alternative diploma.
“He won’t necessarily be graduating with his class,” Behren said, “but he can stay in school until he’s 22 through Washoe County School District’s alternative diploma program.”
Behren said she takes on the burden of explaining to others how he communicates, as “people who don’t know make assumptions that people who cannot use words can’t be intelligent.”
“A lot of people don’t know people with significant disability, and understandably that’s where the lack of understanding comes from,” Nora Behren said.
Rowan Behren, Bryan’s 12-year-old brother, said he loves the new van because of how much more room the family has to travel comfortably in the back seat.
“It’s really helpful because Bry Bry can go a lot more places than he used to and has a lot more opportunities,” Rowan Behren said.
Bradley Perry, the owner and operator of Village Music, created the GoFundMe with his wife, Rev. Sarah Dunn of St. Patrick’s Episcopal Church.
“Being friends with a person with a disability is transformational for people’s lives because we think the way neuro-typical people exist in the world is a box that everyone should fit into, and the reality is that humanity is so much more diverse and beautiful than that box,” Dunn said. “I think Bryan is a constant reminder of that in an amazingly healthy way.”
As a friend of the Behren’s for nine years, Perry said he has watched the Behrens raise their children with grace.
“Despite imagining how incredibly challenging it is to have a special needs child, they don’t treat Bryan differently,” Perry said. “They look for experiences for him — they take him to the symphony and other immersive experiences. They’ve created an incredible quality of life for this kid.”
Rebecca O’Neil is a staff writer with The Union, a sister publication of the Sierra Sun. She can be reached at email@example.com
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