Future Reflections  Convention Report 2006

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The Power of Knowledge

by Eric Vasiliauskas

 

Editor’s Note: At the 2006 NFB Convention two fathers of blind children made presentations. They were both memorable. The first was a PowerPoint presentation by Dr. Eric Vasiliauskas, the father of two blind sons. He spoke to parents of blind children at the seminar conducted by the National Organization of Parents of Blind Children on Saturday, July 1. Here is what he said:

Vejas and Petras Vasiliauskas playing on the lawn of their California home. Blindness is no big deal to them. Over five hundred years ago a philosopher, Sir Francis Bacon, wrote, “Knowledge is power.” These words of wisdom hold true for every step along the way of raising a blind child. The title of this morning’s seminar is “The Equation for Success.” I humbly submit that these criteria are components for an equation of success in my mind. Can any of the kids in the audience tell me what letter dots one and three represent? The letter “k,” and what word is that? That’s right, “knowledge.” It’s the Braille contraction for knowledge. It has always been my favorite letter in the Braille alphabet. Knowledge plus hard work on the part of parents, and also kids, as well as high expectations and, just to spice it up a bit, dreams really make the equation of success.

Have you ever heard the question, what would you do if you knew you couldn’t fail? I want every kid and every teenager to ask themselves that question. Now I want to pose this question to parents. What would you attempt to do for your blind child if you knew you couldn’t fail? To embrace this philosophy, we need to examine our own paradigms and become aware of what is actually possible. Most importantly, we need to evaluate and educate ourselves about blindness issues. We need to expose ourselves to successful blind people and their parents. The more we do this, the more we come to realize that what is attainable for a blind person and a sighted individual is really not that much different. I want you to take a look for a second at a sampling of the careers, listed on the AFB Web site, that blind adults have chosen to pursue.

I want to go back to the equation. It’s important to remember and appreciate that everyone’s situation is unique and different. This is a dynamic equation: knowledge, hard work, high expectations, and dreams. The final result will depend on the data that you plug into this formula over time. I am sure that every parent amongst you can relate to the fact that you have been given a lot of advice along the way. It is not always an easy task to make intelligent and important decisions. One not only needs to understand the options but also the implications and consequences that follow. Today I would like to share with you some glimpses or examples of the way our family has chosen to address this challenge.

I’d like to discuss the value of becoming an informed and knowledgeable consumer. The areas I want to address are, first, medical issues, then the functional issues in raising and educating a blind child, including general education, special education, social skills, blindness skills, and independence.

My wife and I have been blessed with two wonderful children, who are sitting up front here, Vejas and Petras. Vejas is nine years old and is fully mainstreamed, having just finished third grade at our local elementary school. Petras is five and is transitioning from the district’s preschool program to elementary school. To help maintain our cultural roots, both Vejas and Petras attend Lithuanian school on Saturdays for four hours. Here, as you can imagine, we don’t have access to the same VI [visual impairment] resources that the boys have during the rest of the week. Rasa, my wife, Brailles the Lithuanian textbook pages and modifies the worksheets so that, as amazing as it may seem, Vejas and Petras actually have access to the Lithuanian school curriculum to the same degree as their sighted classmates.

Barbara asked me to touch base on some medical issues. Professionally I’m a physician and a clinical researcher. I am what you might call a super-sub-specialist. My clinical and research focus is really limited to treating children, adolescents, teenagers, and adults with a potentially debilitating condition known as inflammatory bowel disease, that’s Crohn’s disease and ulcerative colitis.

I must admit that, despite all my years of schooling and training, this has been the most educationally intense and educationally fulfilling and rich decade of my life. Over the years, during my medical training, treating patients, and in my own personal life, I’ve had opportunities to see how individuals and families deal with life-altering events. As with many other conditions, blindness initially presents the affected individual and parents with new challenges and new realities to face. How will this affect life and expectations? Through my interactions with the blind community I have come to learn that the degree to which blindness, as with many other conditions, is viewed as a nuisance versus a true disability is not so much based on the severity of the condition as how the individual and family choose to handle it.

One’s choices are influenced by one’s perceptions, which in turn are based on knowledge or lack thereof. Once faced with the reality of a visual impairment or blindness, a multitude of medical questions arise. What is the specific condition or diagnosis? How much can your child see? Are there any short term or long term implications? Are there associated issues? Is surgery needed? Can surgery fix the problem? How many surgeries will be needed? Will special glasses or special contacts be needed? Is a conformer necessary? Is eye-patching needed? Should glaucoma be treated medically or surgically? Is there a risk of further partial or total loss of vision from glaucoma, retinal detachment, or the natural progression of the disease? Where do you start with all these questions? Let’s be honest. For most people, processing, putting together all this information, which is very complicated, is not easy to do. The medical system can be quite difficult to figure out. It is pretty much a complicated maze.

So how do you choose the best doctor for your child’s condition? It’s not enough for your child’s eye specialist to be caring or kind. Now this may come as a shock to you, but I am going to let you in on a little trade secret; not all doctors are created equal. This is not a joke. What do you call the medical student who graduates at the bottom of his or her class? (A voice from the audience): “Doctor.” [laughter] Very good. A pediatric eye specialist may have different training from an adult specialist and a different understanding of things. Furthermore, a book-smart doctor may also not be enough. At times you really want a true sub-specialist, one with the experience, expertise, and focus on your child’s specific eye condition. You will see doctors, ophthalmologists, optometrists, opticians, perhaps a retinal surgeon or glaucoma specialist; and you may seek out second or third opinions. There will be disagreements about the medical and surgical approaches and the prognoses.

At each step you will be given information, which may be conflicting, and you are going to be asked to make difficult decisions, sometimes on the spot, without being presented with all the information. On top of that everybody seems to want to give you advice--not just medical professionals, but other parents, blind professionals, educational professionals. Your parents clip out articles and send them to you. Indeed even strangers want to enlighten you and give you advice, including people at the check-out counter at the store, who share how some relative wore glasses as a child but then didn’t need them anymore when they grew up, or about the miracle surgery they read about or heard about on TV or in Newsweek.

Ultimately parents are the gatekeepers, the processors, and the filters of all this information. So where can we turn to help us process all this information? Unfortunately, the doctor’s office isn’t always the best place to get this information because doctor visits are sometimes short and very focused. You can do a Google search for a specific eye condition. It is a good starting point for a lot of people. You will find out you are not alone. You may learn some things there and be directed to some condition-specific Web site that may be helpful. The problem with some of these eye-condition Web sites is that the information isn’t filtered, and sometimes there is an over-focus on the disability as opposed to moving on with more important issues down the line.

You can also turn to an ophthalmology-specific Web site. These are more carefully screened out. But the reality is that the experts, the physicians, may not be the real experts in your child’s condition. The real experts are out there taking care of patients; they’re busy, focusing on research. They really don’t have time to write back on these Web sites. So you need to process all this information selectively.

The National Institutes of Health has a searchable database of medical literature. You can get the abstracts, the highlights of all the studies out there. Unfortunately, it doesn’t take long to realize that even here, all too often, studies are based on very small numbers of patients. Sometimes data are pulled from a number of different eye conditions, and many of these studies are retrospective, which means they kind of look back at things. They don’t look at it in a forward fashion, really limiting the quality of what’s there. You don’t have good long-term outcomes.

In our case we were aware that, despite the early surgeries, there was a risk of future retinal detachment. Then it happened; our son’s retina suddenly detached. Our retinal surgeon scheduled an emergency surgery. After taking a look inside, he came out and pulled us aside to talk with us. He told us we needed to decide right there and then whether to embark on what was likely to be a futile surgery. You see, the retina was so entangled upon itself that while trying to unwrap and reattach this very, very thin, paper-like tissue, there was a high likelihood that a hole would be put in the retina. Then he might actually lose his eye. How do you think this conversation ended? I wish I could say that we were referred to early intervention services and advised to seek blindness skills training.

Rather, the pediatric surgeon gently reassured us that technology was advancing so quickly that there was no need to worry about Braille and stuff like that. Be sure, the medical system has shortcomings. Doctors and other medical professionals for the most part don’t have a very functional focus. You might see a functional optometrist or a functional ophthalmologist, but even they are focused on maximizing vision. These settings, when intervention is recommended to deal with vision loss, are really focused on maximizing whatever residual vision is there. They are really into saving any vision that they can find. They try to be optimistic and hopeful, and they have a hard time uttering the words, “Your child is blind,” because they view that as a failure. In our first year we saw four pediatric ophthalmologists and five pediatric optometrists. We were instructed to “Keep those glasses on,” “Make sure you get that contact in for most of the day, and keep it in.”

I am sure most of you have checked out the pamphlets in doctors’ offices. They address medical conditions; they talk about preventing blindness and vision loss. They don’t actually deal with blindness, though, or what to do once vision loss has been identified. Any functional literature is really focused on making use of residual vision. We didn’t see any literature from the NFB in the doctors’ offices, nor that of any blindness organization. Braille was never brought up. There was no emphasis or any reference to blindness-skill acquisition. There was no referral to early intervention services. For over a year we received reassurances that “It’s just too early to tell how much your child will be able to see in his remaining eye,” and that we needed to wait and be patient and “See how things turn out.”

Yet Rasa and I realized that, while our little boy recognized us, it was not through visual mode. We knew that he had never seen our faces. We knew what no one else was willing to come out and say. So when Vejas was four months old, we faced our reality and embarked on a Braille- and blindness-awareness journey without much of a map or guide book.

Sadly to say, too many parents get paralyzed, sometimes for years, either in the premedical phase of “why did this happen?” or by focusing on blindness issues that often end up being incompletely realized hopes of normal or near-normal vision. Before I leave the topic of medical issues, I want to make an important point. I can’t stress enough how important it is that, as children get older, they too need to learn about their medical conditions. Over time it’s important to transition them so that they are aware of the medical issues of potential complications and assume responsibility for their eye care. Glaucoma, potential for retinal detachment, and, in many patients, diabetes are ongoing threats of additional visual loss of whatever residual vision there is to begin with.

Now, while we continue to deal with medical issues, including glaucomas, conformers, and scar-tissue build-up, retinal detachment, potential trauma from eye-poking, and such, your family really needs to move on. You can’t just stop there. If you want your child to succeed, the medical issues are really just the beginning.

Parent power: never underestimate the power of a parent’s experience and words. I’ll never forget the first major conference I attended where a lot of blind people were there. At the conference I met a mother who was manning one of these parent organization booths. She eagerly shared with me that, because her son had had some useable vision in one eye, she and the teachers had decided to hold off on the introduction of Braille. Oh how she came to regret that decision. You see, her son, already at the elementary-school level, was having a hard time keeping up with his classmates. This mother did not beat around the bush. What she wanted to relay more than anything else was to make sure our son would be well versed in Braille skills. By that point Vejas was ten months old, and despite reassurances by our doctors that our son would have some useable vision, we had already come to the conclusion that we should learn Braille just in case. But this was an eye-opening personal philosophy change and realization. Our child needed to know Braille in order to succeed. This message, this bold truth, was put forth, not by a professional, not by an educator, but by a mom, a parent just like many of us in the room here today.

At that conference my interactions with blind adults, blind children, and parents of blind children changed the misconceptions and uncertainties I had about the future. From that point on I knew that the focus needed to change from the medical diagnosis and any residual thoughts about why this had happened to an emphasis on our child’s future.

At this point I would like to share with you my grandfather’s equation for success. It’s real simple: education equals success. From an educational standpoint the actual diagnosis is not so important; rather it’s critical to assess whether your child is functionally blind or is a low-vision student. Functioning blind students rely on senses other than vision as their major channel of learning, in contrast to the low vision child, who still uses vision as her major mode of learning. Is your child low-vision or functionally blind? And, more importantly, is there a risk of further loss in the future? The answer to these two questions will help you answer this critical question: what is the optimal reading medium for your child? Will residual vision be a primary mode of learning or just a supplemental tool?

Now let’s take a look at some hard data from the American Foundation for the Blind’s Web site. Forty-five percent of blind or severely impaired individuals graduate from high school compared to 80 percent of sighted individuals. Only 16 percent of those who go on to college graduate from college if they are blind. If you do the math, that’s about 7 percent of our blind kids are graduating from college. If you look at work experience, only 32 percent of legally blind kids make it to the point where they are actually employed. Most of those are Braille readers. If you want to focus on the visually impaired kids, I want to show you this picture I downloaded from one of the schools for the blind Web sites. Look at this computer screen. At this magnification, you can only fit two lines on the page. That’s the equivalent of about two or three words per line. Can you imagine trying to keep up with any level of school work at this magnification? Indeed residual vision can be a disadvantage. The irony is that a lot of times these kids fall further and further behind. As I mentioned, many medical conditions are associated with progressive vision loss over time, and vision tends to decline with age. This applies to all of our kids. This picture is of Erik Weihenmayer, who is now a major advocate for Braille. He too was a kid who resisted blindness skills training and has come to understand that that wasn’t the best approach.

Print and Braille really aren’t all that different. You may hear that Braille slows you down. I want to share one thing my son said when he was in first grade at Lithuanian school. He had just finished an assignment, and I leaned over and said, “Everyone else is still working on their thing.”

He goes, “Dad, I know; that’s because reading Braille is faster.” My son participated in the Braille Readers Are Leaders contest over here. Last year he read over twelve thousand pages. Actually we have a young girl here who read over sixteen thousand pages in three months. Can you imagine any large-print student doing that? I downloaded this graphic from the United States Department of Education Web site. By the end of third grade an average third grader can read eighty-six to a hundred-twenty words per minute. We just found out that Vejas was reading at 182 words per minute with 100 percent accuracy. How hard is Braille? It’s so easy even a child can learn it.

So, if you want to rely on the system, I want to point you back to these two report cards I showed you: educational attainment and job performance. How would you rate your system? Indeed parents are needed to fill the gap between what is currently available and where we need to go. Look in the mirror, and you will find that you are the service coordinator. One parent really summed it up nicely. He said, “Kids need the skills to make it in the real world. They will not be given a break just because they have a visual impairment. Once your child graduates, it’s survival of the fittest.”

I just want to share one other thing with you real quick. My son is in third grade. In the year 2006 in the elementary school setting, first graders learn keyboarding; second graders are learning Word; and third graders, Excel and PowerPoint. My son Vejas just did a PowerPoint presentation on the Lincoln Memorial. How’s that for a wake-up call?

In his classroom we have actually set things up so that he can function independently. You’ll see in the picture over here that he’s got his Perkins Brailler, and behind that he is using his BrailleNote. All he needs to do is turn around over here, walk over to the back of the room, and, by pointing his BrailleNote at one of these infrared ports, he can either print or emboss whatever he needs, right in class, independently, on his own. Isn’t that pretty cool!

As I wrap it up I just want to share with you again, knowledge is important. Kids in the audience, you can use this to your advantage. My son asked me if he could go skiing because he read about it in a book. So we went skiing. He read a book about snowboarding, and indeed we went snowboarding. I wasn’t sure how to approach this, so I actually went to the NOPBC blindkid listserv, which you parents all should be a part of. Some parents gave me some tips on how to make that happen. Vejas read a book on surfing and asked what surfing was. He was five and a half. I put it off for a year; then he asked me again, and I had to do it. Here is my little six-and-a-half-year-old surfing the waves in Kauai. Here he is at eight-and-a-half, and I think I have the coolest desktop in the entire world. With that I’m going to stop and ask that at this conference we take advantage of all the resources we have and network. We can all learn a lot from each other and spend time getting to know each other. Get the kids to interact, not just at the various official functions, but at the pool and such too.

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