Quality of Life: Community Support Improves Accessibility for Incline Village High School Students
Nearly two years after 17-year-old Bryan Behren successfully underwent spinal fusion surgery at Stanford, his caretakers finally have the time and the tools to bring the teenager back to the slopes of Alpine Meadows.
“The TetraSki was designed for significant disabilities,” said mother Norah Behrens, referring to a wheelchair with a joystick designed for veterans, those with limb differences and even paralysis. State-of-the-art sports equipment makes Bryan’s life better, but only if his family can get out of the driveway.
Bryan is the eldest of three siblings, the children of Nora and Scott Behren. According to Nora Behren, the couple moved to the area in 2000 after completing the Appalachian Trail together.
Four years later, the Behrens gave birth to their first son. Bryan suffered 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 at times,” said Nora Behren.
The mother-of-three said the family had benefited from local resources, including early intervention and special education, where he was “fully included in slant schools”.
“He’s had the IEP his whole life,” Nora Behren said, referring to the state-supported collaborative effort of district administrators and educators to nuance academic goals set for students with disabilities through programs. individual education.
Behren said her son began receiving homeschooling while recovering from back fusion surgery at Stanford University in the past year and a half. The resources his family relied on during his son’s lifetime allowed him to be well versed in the utilities and servers available.
“We know the system,” Behren said, adding that in addition to government supports for people with disabilities — including funded food supplies — Bryan is enrolled in Medicaid as well as her husband’s insurance.
“We handle most things for him,” Behren said, adding, “but when it comes to pickups, it’s not easy to get financing.”
Behren said people with disabilities can get help with the conversion, but still have to buy the vehicle on their own.
“There really aren’t four-wheel-drive options that aren’t huge and cost $100,000,” Behren said.
The family raised thousands of dollars more than their original fundraising goal. With the excess money, the Behrens will invest in snow tires and chains for the vehicle. Norah Behren said she could always choose to lift Bryan into the SUV in an emergency.
Nora Behren registered the van last week after buying the used 2016 Ford Transit wheelchair-accessible van for $36,000 from a Sacramento-based family on Craigslist. The Behrens reported that during their active fundraising period, they received support from 130 different donors with donations ranging from $15 to $4,000. The total raised through GoFundMe was $30,800, Behren said, but the family started with a $10,000 gift and the extra will go towards car insurance, Behren said.
The 6-year-old vehicle with 46,000 miles has a ramp, said Nora Behren.
“When it has a ramp and tie-downs in the back, there’s no lifting,” Behren said. “He just gets on the chair in the house and stays in the chair. It’s something my mom can (handle).
Behren said Bryan could use the transit wheelchair like he was on a school bus.
Bryan weighs around 60 pounds, Behren said. Nora and Scott can load and unload their son from their 2007 Ford Explorer into a seat that Bryan uses as both a pedestrian and a passenger. The adaptive car seat was specially designed by mechanical engineering students at the University of Nevada Reno, Behren said.
The chair was a life-changer for the family, Behren said, allowing them access to the Lake Tahoe waterfront. Bryan accessed breathtaking views of the area in the specially designed chair, but the biggest challenge between point A and point B proved to be getting home from the car.
“We are an active family,” said Nora Behren. “We like to go to the beach, (…) we took the hiking chair. He can go many places – he can’t go everywhere.
Nora Behren said she was able to lift the combined weight of her son and chair – 70 pounds – in and out of their Explorer in good condition. His 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 an emergency.
“A lot of people without reduced mobility don’t understand the challenges,” Behren said.
Behren said her son’s non-verbal seizure disorder makes him unable to care for himself – he is non-verbal and tube-fed – but that means his mother is confined to where she is providing care to Brian.
“My mom can’t leave the house,” Behren said. “…she can’t even load up the car and go to Raley’s without the van.” The transit ramp is really light – something our 70+ parents can do. “
Behren said her son’s condition has given her both gratitude and a deeper empathy for her life.
“I don’t think people understand the limiting nature of how things are set up,” Behren said.
The convenience of the van 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 have to go to the grocery store”.
Behren said her family had to get creative to find other sources of support. In this way, Behren said the gift of the van emphasizes both the challenges and the blessings that Bryan’s life has brought to the family.
“I have a friend in Reno with a disabled child who doesn’t have a van, but she has back problems. She either has to put herself in harm’s way or wait for her husband — those are her options,” Behren said. .
Behren said the family not only received support from the government, but also help from friends throughout their son’s education.
Bryan traveled overseas to Machu Picchu for the wedding of a friend and former employee of Behren’s pizzeria. Their “rather tall Serbian friends” carried their son’s wheelchair up the steps of the 15th-century Inca citadel, despite local authorities denying wheelchair access.
Behren said her son was smiling and talking — “not with words.”
“He vocalizes,” Behren said, adding that he enjoys hearing the stories his grandmother reads to him and the music his father plays to him. “He can use his gaze to express what he knows.”
Nora said Bryan was getting “real credit” and receiving an alternative degree.
“He won’t necessarily graduate with his class,” Behren said, “but he can stay in school until age 22 through the Washoe County School District’s Alternative Graduation Program.”
Behren said she takes it upon herself to explain to others how he communicates, because “people who don’t know assume that people who can’t use words can’t be smart.”
“A lot of people don’t know about people with significant disabilities, and that’s naturally where the lack of understanding comes from,” said Nora Behren.
Rowan Behren, Bryan’s 12-year-old brother, said he loves the new van because of the extra room the family has to travel comfortably in the back seat.
“It’s really helpful because Bry Bry can go a lot further than before and has a lot more opportunities,” Rowan Behren said.
Bradley Perry, owner and operator of Village Music, started GoFundMe with his wife, Reverend Sarah Dunn of St. Patrick’s Episcopal Church.
“Being friends with someone with a disability transforms people’s lives because we believe that the way neurotypical people exist in the world is a box that everyone should fit into, and the reality is that humanity is so more diverse and beautiful than this box,” Dunn said. “I think Bryan is a constant reminder of that in an incredibly wholesome way.”
As a friend of the Behrens for nine years, Perry said he saw the Behrens raise their children gracefully.
“Although they imagine how incredibly difficult it is to have a child with special needs, they don’t treat Bryan any differently,” Perry said. “They are looking for experiences for him – they are taking him to the symphony and other immersive experiences. They have created an incredible quality of life for this child.
Rebecca O’Neil is an editor at The Union, a sister publication to the Sierra Sun. She can be reached at [email protected]