Ventura County has some especially talented and resilient young people. Despite their limitations, they stayed true to themselves and persevered even in the toughest of circumstances. With the holiday season upon us and a New Year around the corner, their stories are surely inspirational.
Never lost sight of goals
On any given day, 14-year-old Abbey Eads can be seen at the Ojai Skate Park as she maneuvers up and down the ramps with her blond hair blowing in the wind.
But most spectators don’t realize that the teen’s techniques are performed without sight.
“I’m blind,” said Abbey, an Oak View resident who’s in the ninth grade at Ventura High School. “I got a brain tumor three years ago and that’s how I lost my vision in 2014.”
Abbey started skateboarding at age 10 because her father enjoys the sport.
“So we would just do it together for fun,” she said. “Before I lost my vision, I got pretty good.”
Losing her sight was gradual and unexpected, she said.
“I was at my school and I started not being able to see my assignments and I started losing my peripheral vision,” Abbey recalled. “Then I had this vision test at school and I didn’t pass, so we went to the doctors and they said my eyes are perfect. So I got an MRI and I discovered I had a brain tumor.”
Today, “I have some sight,” she said. “I can’t see at all out of my left eye, and I don’t have any peripheral vision in my right eye.”
At first, losing her sight “was, like, really confusing,” Abbey remembered.
“I had to learn all these new techniques and basically just doing things a whole different way,” she said.
When it came to skateboarding, that meant learning to use a white cane at times to help her navigate the slopes at the Ojai Skate Park.
“It would be kind of scary because there would be a lot of people there, so my dad built a half-pipe for me in our backyard,” Abbey said. “So I got on that a lot and I learned how to drop in and do kick-turns. At the skate park I feel comfortable using my cane — but at home I just like to go free.”
In addition to skateboarding, Abbey also enjoys surfing with her dad, as well as a sport called Goal Ball that she plays at school with assistance from her Braille instructor.
“It’s really neat — it’s a completely blind sport,” Abbey said. “Everybody who’s playing is blindfolded and there are tactile lines on each side of the court; and you get on your hands and knees and you feel. The ball has bells in it and we pass it along the floor — it’s all just hearing.”
Losing her sight also meant finding another way to read.
“I had to start using Braille,” said Abbey, who is now an expert at reading the system of raised dots with her fingers. “I also use a machine that I can slide the paper under a camera and zoom in as much as I need to.”
When Abbey first lost her vision, “It was a grief party over here,” said her mom, Tricia Eads. “We were mourning the loss; everybody was coming over — it was like someone had passed.”
Tricia Eads then noted the saying: “When one door closes another one opens.”
“The whole lesson for us is that blindness doesn’t make you sick, blindness doesn’t kill you,” she said. “We worked with the Braille Institute in Santa Barbara as well as a Junior Blind organization in Malibu, so we had a lot of support and people just helping us out of our darkness into our light.”
Abbey admitted that losing her sight was “a little sad” at first.
“But I feel like now I’m OK,” she said. “I just feel like there’s probably nothing that can change it, and I feel like it’s given me a whole new perspective to look at things differently.”
Beyond bright in the quiet
Born without the ability to speak, Diego Peña found his voice at age 3 when his mother gave him an iPad to communicate.
“Without her, I would not have a voice,” Diego thoughtfully expressed, typing one letter at a time.
On any given day, spelling or typing a sentence can take one to several minutes for Diego, who was born with autism and is now 8 years old.
“It’s difficult for him to use all 10 fingers,” said his mom, Edlyn Peña, an associate professor and researcher at California Lutheran University. “The speed of his typing has everything to do with fine motor challenges and sensory regulation rather than intellectual capacity.”
Diego uses the iPad as a third-grader at Rancho Rosal Elementary School in Camarillo, where he utilizes a multimodal approach, including a laminated letter board to spell out responses, and a white board with choices. He is accompanied and supported by Amanda Johnson, his communication partner, who is employed by Children’s Developmental Milestones.
“I love writing and math,” Diego typed. “In writing I get to be creative, witty and free of autism. Writing is a release from being trapped inside this body. Math is really fun. I like to think of myself as a human calculator.”
The boy explained, in his own words, what autism is — and what it means in his life.
“Autism controls the body,” Diego wrote. “Autism lives in the brain, which makes us act differently, but don’t confuse that with intelligence. I am strangled by my motor system and experience raw impulsivity.”
“It’s hard to wake up knowing that every day is hard, but I love to fight for success!” he relayed. “Life with autism has taught me love and compassion towards everyone.”
When asked about the biggest myth surrounding people born with autism, Diego replied, “that we are born without brains. I always knew what I was supposed to do, but the shackles of autism restrained my responses. People need to give us more credit.”
According to Diego’s Woodcock Johnson scores from second grade, the boy operates at a 17-year-old level for reading and academic passage comprehension, Peña said
“He is also at 17 years or older in written language, which includes spelling and writing samples; and he is at 12 years old in math problem solving,” she said.
At CLU, Peña conducts research on supporting students with autism who use alternative forms of communication and who aspire to transition to college. After Diego’s diagnosis at age 2, she also became the co-founder and co-director of the new Autism and Communication Center at CLU.
“The diagnosis changed our lives,” said Peña, who lives in Camarillo with Diego and her husband, Damien. “We were immediately immersed into navigating the maze of services — medical, behavioral, speech and so forth.”
The most difficult obstacle for Diego was his communication, she said.
“Without speech, he could not demonstrate his intelligence to others until we discovered communication apps on the iPad,” said Peña. “We fought for Diego to be included in general education even before he had a reliable means to communicate.”
When Diego was 6 years old, his parents started to realize that the boy was extremely gifted.
“By then, he had learned to spell out his responses on a laminated letter board and was beginning to type on a Bluetooth keyboard,” Peña said. “Here was a 6-year-old, nonspeaking boy who spelled letter by letter about his concerns for social justice, peace and autistic rights.”
As parents, “We panicked a bit,” she continued. “How do you nurture the cognitive and emotional development of a young child who is both severely affected by autism — and in many ways, brighter beyond our wildest imagination?”
With that, “We started to read more literature and research on twice exceptional learners, those who are both disabled and gifted,” Peña said. “This helped us wrap our minds around understanding Diego and supporting him.”
After a few years, “we decided to make a concerted effort to surround Diego with a team of therapists and teachers who focused on his strengths, interests, and potential,” Peña said. “Rancho Rosal Elementary School has provided an outstanding culture of support to a unique learner like Diego.”
This past Thanksgiving, Diego expressed his thoughts for a school project.
“I am thankful for my communication,” he wrote. “I was born without a voice but was given one through alternative ways.”
When he grows up, he wrote that he wants to be an “autistic self advocate and entrepreneur.”
“I’m inspired by people who stand up to injustice,” Diego added. “Gives me courage to fight like a lion for autistics every day.”
Born to dance
Although she was born with a disorder that affects the use of her muscles, Jessica Clay is making great strides as a performing arts major at California State University, Channel Islands.
“Most of my muscles are affected, either by being too tight or not working good enough,” said Clay, 20, of Ventura, who was born with cerebral palsy and uses a power wheelchair to get around.
“Since I was born with it, this is all I know for myself,” she said. “I don’t dwell on the things I can’t do — if I want to do something I will figure out a way to do it.”
Clay just transferred from Ventura College, and enrolled at CSUCI as a junior this fall. She came in as a performing arts major with an emphasis in dance, and just added political science as another major.
At CSUCI, she is involved in integrated dance, which she describes as “a dance that includes people with and without disability.”
“For me, not only do I love to dance, but it is a chance to educate and change people’s perception of dance and disabilities,” Clay said.
Through integrative dance, “We can get really creative because sometimes the typical dance move, like an arabesque — a ballet move where a dancer will stand on one leg and extend the other leg behind them — may even be performed standing on the back of the wheelchair while moving,” she said.
The choreography timing is challenging, she said, “because you are working with a piece of equipment that, for example, does not turn as fast as a dancer may spin.”
“There are a lot of things that make this a unique dance to perform,” Clay said. “It is really fun, challenging and creative to come up with a piece, but at the end you have a unique dance that, no matter what your abilities are, everyone on that stage is a dancer.”
In addition to dancing at CSUCI, Clay also dances at the Camarillo Academy of Performing Arts, and recently performed a dance for Disability Awareness with dancers from Moorpark College.
“Dance has given me guidance and a direction to go in my life, with something I am passionate about,” Clay said. “When I first started at 9, it was just something really fun to do. When I got more serious about it I was in high school and I realized it was something I wanted to really pursue. I loved the thought of dancing and creating some social change at the same time.”
For Clay, dancing is a catalyst to create social change by raising awareness.
“Cerebral palsy is a disorder that affects the muscles, because the part of the brain that controls the muscles has been damaged,” explained Clay, noting that this occurs around the time of birth, and can vary from person to person.
In her experience, “I feel like a lot of people talk to my mom, friends or caregiver before they talk to me, even if the question is for me. They are not sure I can understand or can speak. I don’t have any mental challenges and can speak for myself. I understand people can be unsure, and that is why I am always open to questions.”
Aside from dancing, Clay loves hanging out with her friends, listening to music, horseback riding and traveling.
In the future, “I want to be able to advocate for equality for everyone, especially people with disabilities.”
Meanwhile, because she loves to dance, “This gives me a way to advocate for much-needed social change at the same time, to open people’s minds and hearts,” Clay said.
“This is why I am majoring in performing arts with an emphasis in dance,” she said. “I decided to add my political science major because I do want to learn about all the different processes and diversity behind the different laws … so I can understand and better educate myself, and do a better job at advocating and looking at social movements.”
Looking back on her success so far, Clay said her best accomplishments were winning two national awards for the PTA Reflections for Arts Program for Choreography in the Special Artists Division. She was also invited to perform at the Department of Education in Washington, D.C., and Austin, Texas.
“These experiences made me realize that dancing and educating is what I want to do for the rest of my life,” Clay said.