A Different Vision


A Different Vision


FAMILIES - Spring 2006 ©
by Fay Reiter

Trevor Saunders is a teenager. He loves being outdoors, and goes camping, hiking and canoeing with the Boy Scouts. His favorite subjects in school are science and math. In his spare time he enjoys reading books on military history, working on the computer and playing solitaire.

And, like most people, 16-year-old Trevor has individual aspects about his life that make it remarkably his own.

Trevor was born with Aniridia, a rare congenital eye condition characterized by the underdevelopment or even absence of the iris. Over time, the condition usually causes loss of vision. By the time Trevor was seven months old, he had lost all his vision in the left eye. He had limited sight in his right eye until he was thirteen and he did almost everything sighted people do. He even rode a bike. But gradually, he lost vision in that eye as well.

“Until the beginning of 8th grade, I could read print, and see light,” Trevor says matter-of-factly, as he sits sprawled out in his historic home in Hopewell, New Jersey. “I can still see light and can make out objects.”

Trevor views his blindness as a factor of his life, but not the sole, determining factor.

“It’s not that you can’t do things, but you have to do them in a more inconvenient way” he says. “I’ve had to change the way I do things. In order to read (graphs), I have to have someone transfer it to Braille, which is less convenient to read than text. You can skim text, but with Braille, the chart is more difficult to just glance at.”

Trevor faces a similar challenge reading textbooks. “It’s hard now that I can’t read textbooks, so in addition to reading Braille, I listen to CD’s of books.”

Trevor’s blindness seems like his least favorite topic, and his face takes on a bored look when you mention it. He’d much rather talk about his passion for math and science and his involvement with the Boy Scouts where he has already holds the second highest rank of “Life.” He is currently working toward achieving Eagle Scout status; however his main goal with the scouts is to have fun.

“Being outside is the main motivation for me. I really like the camping and hiking.”

Through scouting, Trevor also has opportunities to pursue other interests like indoor rock wall climbing. “I enjoy navigating the wall. It’s really challenging and is an activity where I can just feel my way along. I would like to pursue outdoor rock climbing at some point.”

As is evident by now, Trevor is fiercely independent. You might easily find him walking down a Hopewell street with an obvious determination. He prefers not to use a cane, and his slim frame moves with such energy that he appears as if he’s running to catch a bus, his mass of curly brown hair flopping in the wind.

He seems to approach most tasks with ease, and seems unflustered by life, not surprising for someone who endured ten surgeries in the first nine months of his life. “Inconveniences” are what he refers to as the obstacles in his path, taking them on in the same way he might approach solving a math problem.

Trevor’s parents are separated and he lives with his father, Dan Saunders, who works for the New Jersey Historic Preservation Office. Trevor spends weekends at his mother’s house just a few blocks away, where his brother Duncan, 12, lives most of the time.

Although success seems to come easily to Trevor—he’s an honor student, an excellent swimmer and accomplished outdoorsman—he’s quite modest and doesn’t’ appear to be on overdrive like many kids his age. And he often shows a great sense of humor, about himself as well as life in general.

“There are a few things I can’t do” he quips. “Like be a fighter pilot.”

Dan has a quiet manner that seems to have rubbed off on Trevor. He seems very comfortable with Trevor’s independent nature, but provides support when he needs it. Dan serves as a Boy Scout leader in Trevor’s Troop. Together, they read, listen to the radio and sometimes ride a tandem bike.

“Trevor has always found a way to adapt, and is starting to see himself as a blind person,” says Dan.

Dan would like to see Trevor use a cane on a regular basis to get around. Trevor uses one when he attends school at Hopewell Valley Central High, but still prefers to go without one otherwise.

Dan feels that Trevor’s teachers have been invaluable to his development. “Lillian Rankel, Trevor’s chemistry teacher has been wonderful for him. She has been a catalyst in Trevor’s development and even arranged to have a blind Ph.D. student, Cary Supalo, speak at Trevor’s school this year.

“Trevor’s association with Cary has been great,” says Dan. “I think he really likes to spend time with other blind people who are doing interesting things.”

Dan is understandably proud of Trevor, like most parents. But does not label his son as somehow a super-achiever because he has a vision impairment.

“Trevor is like anyone else,” Dan says. “He is a smart person who loves math and science. His level of determination is astonishing and he has an intense focus with a stunning level of recall. He can hear things once and remember them. Trevor can also be very stubborn, which has served him as both an asset and a liability.

“He (Trevor) is very focused. He loves to be read to and will also listen to the radio and to books on CD. He particularly enjoys Tom Clancy novels and a broad array of non-fiction, such as military history and science.”

Dan credits Ronnie Staffenberg, Trevor’s aide at school, with being particularly helpful with Trevor’s technical transition from reading large print to Braille.

“Ronnie worked for the Division for the Blind (the New Jersey Commission for the Blind and Visually Impaired) and knows how to get help. She translates a great deal of material at school from written worksheets to Braille for him,” Dan explained. With the help of Ronnie and an extra period of support, Trevor is able to attend all regular education classes and is in honors classes in math and chemistry.

Dr. Lillian Rankel is Trevor’s chemistry teacher at Hopewell Valley Central High School. “Prior to becoming a teacher, I worked in private industry and was used to networking. So when I found out that I was going to have Trevor as a student I contacted the American Chemical Society and they put me in touch with Cary Supalo, a Ph.D. student at the Pennsylvania State University,” Rankel explained.

“Cary was also previously sighted and lost his vision gradually. He introduced us to JAWS, a software program that reads text out loud on his computer. He also attached probes to the computer so that it can read out the weights, temperatures and pH (which tells you how acidic something is).”

According to Rankel, the use of the probes will enable Trevor to do more experiments on his own. Rankel is excited that Cary is in the process of developing a probe that will communicate the color of a substance and report if it has turned cloudy. Cary gave Trevor a big Braille periodic table that lists the elements and their atomic masses and numbers,” Rankel said.

Trevor has enjoyed his association with Cary. “He had ideas for ways to do things that I never thought of so I don’t have to reinvent the wheel,” said Trevor. “He also created a THREE-D version of a magnetic board used for figuring out structural formulas from molecules.”

Trevor works in Dr. Rankel's classroom a couple of days after school on glassware and other skills so that he can take Advanced Placement Chemistry.

Yesterday, he made up a solution of sodium chloride,” said Rankel. “We put tape on a triple beam balance so that he can feel where the numbers are. I have a lot of models. If I am teaching, I will describe a model and he will feel it. I will say the first bond is at 12 o’ clock, etc.”

According to Dr. Rankel, the other students are very matter of fact about Trevor’s blindness and he has worked with many of them as a lab partners. Trevor will raise his hand often and likes to answer questions.

“Trevor is very careful and patient, qualities that will make him very successful in chemistry labs,” said Rankel. “I hadn’t previously taught science to a blind student and I have found it to be a very interesting. I like to problem solve and enjoy the challenge of figuring out how to help Trevor learn to do things that other students do with writing. I made magnetic elements using felt electrons that he could place around elements to show how bonding occurs in compounds and around elements.”

Last fall, Dr. Rankel took Trevor to Princeton University to hear a speech by Erik Weihenmayer, a blind rock climber who climbed Mt. Everest in 2001 He explained how he tapped on ice to find his way, the same technique Trevor uses on the glassware to see how high the solution is in the vile,” Rankel said.

I think the biggest challenge Trevor will face as a chemist is changing people’s attitudes about blindness,” Rankel said. “Not too many people have the opportunity to meet blind people who are doing things. In the suburbs, we are isolated from people who are blind since we don’t have public transportation.”

Trevor is active in extra curricular science activities and has volunteered to make up solutions for some of Rankel’s classes. He also participates in the World Health Club, where he works with classmates to raise awareness of health needs throughout the world. He recently gave a talk on the importance of aspirin in the treatment of diseases in Africa.

He entered Chemagination, a school chemistry contest, with another student where they will be creating an artificial kidney system.

“I have learned from working with Trevor how to think differently so that I can make some things that are useful for him,” said Rankel. “This has taught me to ‘think outside the box’. I feel there is always a solution to something, you just have to figure it out.”

Rankel described one lab that involved cutting and measuring straws. “Trevor had a scissors and his Braille ruler and he did his experiment like everyone else.”

Rankel also appreciates Trevor’s sense of humor. “He laughs at my jokes in class,” she quipped.

Rich Armington is one of Trevor’s Boy Scout leaders and has known Trevor his entire life. “My goal for Trevor and all the boys is to give them the opportunity to explore new territories. There is a difference between simply going outdoors and going outdoors trained. I hope to teach them the necessary skills for outdoor activities like hiking and backpacking, such as how to order the events to stay safe. The thinking process they develop while making these decisions in scouting can be translated to their personal lives.

“While we might see things as being difficult, Trevor doesn’t see things this way. If, for example, we are hiking on rocky terrain, which is hard for all of us, Trevor will do it by feel. He will also ask us to describe the terrain. The other boys will give him pointers like ‘look out for that rock, or go left.’ He can also navigate by listening to the footing of the boys in front of him.”

“Trevor can feel the expansiveness of the outdoors,” said Armington. “He simply gets as far as he can.”

According to Armington, Trevor is willing to try anything within reason. “He is a good swimmer and does really well on the rock wall. We even had him shooting black powder rifles at camp. He also paddles his own canoe, puts up his own tent and cooks his own meals on backpacking trips. Occasionally he gets disoriented but he usually finds his way.”

Armington said he has noticed that by and large the other scouts don’t view Trevor as different. They are very comfortable around him and will play manhunt, a popular hide and seek game.

“I’ve learned that I shouldn’t second-guess what Trevor can do,” said Armington. “It is best to give him as much information and let him decide what he can handle. I’ve also learned not to pre-judge him. In situations where he needs to focus, we leave him on his own. Scouting presents greater challenges than exist in the real world. We offer choices and hope to empower the boys to make decisions.”

Trevor’s mother, Melissa, is a calm and reflective woman who is working toward her Ph.D. “Until 2003, Trevor could see out of one eye and did everything,” she said thoughtfully while sitting in the living room of her comfortable ranch style home.

“It always seemed to me that he had learned to put up with so much that the little things that aggravate the rest of us are so little to him. I am completely and utterly in awe of Trevor. He will challenge things with an amazing determination, but doesn’t get overly emotional in any way. He doesn’t open up and talk much about himself. He’s the ultimate minimalist when it comes to communication. He gets real delight in thinking about math or chemistry problems.”

Trevor has always attended public school. It seems he made the decision himself right about the time he was about to start Kindergarten.

“I considered sending him to private school,” Melissa reflected. “But at the time you could see Hopewell Elementary School, the local public school, from the house we lived in. One day, Trevor pointed at the school and declared emphatically, ‘I want to walk to school. I don’t want to drive to school every day.” Melissa had already researched schools in the area and was most impressed with the Hopewell schools, which have worked out well for Trevor.

Trevor and his mom often read together. “I will read the New York Times Science section to him," she said. “Trevor has a really broad range of interests. Sometimes he will cook with me or we watch the history channel. He also loves to wrestle with his twelve-year-old brother Duncan, who is an avid La Cross player. The brothers like to sled off the roof together, when weather permits.”

One major hurdle the family had to over come when Trevor was younger was the knowledge that people born with Aniridia are also more prone to getting Wilms Tumor (a kidney tumor), so Trevor had to endure regular ultra scans for many years. Fortunately, he never developed the condition and is no longer at risk for it.

Melissa credits her parents with being very supportive. “He used to go to my parents three afternoons a week. My father is completely devoted to Trevor. When Trevor was in the 4th grade, he was asked to draw a picture of his hero and he drew his grandfather.

“Once we got through the first year of his life, having endured ten surgeries, it became apparent how resilient Trevor is,” said Melissa. “Since then it has been fun. Trevor makes it really hard for you to remember that he is blind. He has so much to teach the rest of us about how to deal with things and move on with our lives. He is a real role model for me.”

Melissa is concerned about Trevor being ready to become more independent as he gets older. “The critical elements are him gaining confidence with the caning and learning Braille,” she said.

Melissa is excited about Trevor’s participation this summer at “Rocket On” at the Goddard Space Center where he will be working with Nassau Scientists. “When Trevor met Cary Supala, it was a seminal point for him, meeting someone who is blind who had achieved so much.”

Melissa also acknowledged the support and resources Trevor has received throughout his life from the state Commission for the Blind and Visually Impaired. “We recently attended mobilizing and educator classes. The Commission has always provided aides in his classroom at school, and in sixth grade they provided a computer.”

The local Lions Club, historically committed to helping people with eye problems, also donated the machine that Trevor uses at high school to scan material and print it out in Braille.

Living in the small town of Hopewell also has been a great comfort to Melissa. “Everyone here is incredibly supportive and nurturing. I have no fears about Trevor walking around. It has been great that people know him and will help him find his way home if necessary.”

Although life without sight can be challenging, clearly there are benefits to having a different kind of vision. As Scoutmaster Rich Armington says—“Most people look at Mt. Everest and say ‘I can’t climb it. It’s too big.’ Trevor doesn’t worry about the size of the mountain, he just puts one foot in front of the other.”

From, the NEW JERSEY COUNCIL ON DEVELOPMENTAL DISABILITIES

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