Being Legally Blind
Observations for Parents of Visually Impaired Children
by Justin Oldham

Introduction

I am legally blind. I have what is called a congenital birth defect. My mother and my father each had family histories of certain illnesses which made it much more likely that I would be born with this disability. I's not likely that I will be cured. The long-term prognosis is that I will eventually become completely blind. I have known about this possibility since I was eight years old. Medical science is advancing at such a rapid pace that many of my visual handicaps have been neutralized. It's not likely that medical science will find the cure for my specific problem in my lifetime.

I understand this, and I accept it. Visual impairment is a fact of life for millions of people around the world. Being legally blind means that we are not fully sighted, nor are we entirely blind. This rather unusual circumstance makes it hard for our doctors, teachers, friends, and parents to relate to us and understand what we go through. As we get older, it's up to us to find the words to ask the questions that will tell us what we need to know about our disadvantages so that we can make the most of whatever eyesight we have.

Like anyone else who is born with a disability, we learn to live with it. We find our own ways to cope with it. We may not like it, but in the fullness of time we learn to embrace it and make it a part of us. One of the most difficult things we will ever do in our lives will be to relate the facts of our condition to others. In many cases, we make the assumption that adults already know what we're talking about. The fact of our disability is just so normal to us that we assume that our parents must know more about it than we do. We have our feelings hurt when our teachers and friends don't understand our explanations. Some times, other people think we are lying when we talk about our blindness.

Doctors can tell our parents what makes us partially sighted. They can tell our moms and dads them what they need to do about it. Teachers can help our parents understand our special needs. They can also help us to read, write, and study in the same classroom as normally sighted students. The same people who teach us and help us with our medical problems can help our friends to understand us. The people who will eventually be our friends will ask a lot of hard questions, and it's up to us to know the answers.

As a child, I wished for a self-help book in much the same way that parents wish for an owner's manual for their kids. I learned to read early, and it frustrated me deeply that none of the libraries I went to had any books that would tell me how to be legally blind. I asked my mother about this shortly after my seventh birthday. She'd already told me that I was destined to be a famous writer. She looked at me with total sincerity. "It'll be up to you to write that book."

I'm not a doctor, but I am legally blind and I have just one eye. At the time of this writing, I am 42 years old and I still can't find any books that will tell parents or their children what it's like to be partially sighted. Although she died when I was twelve years old, my mother was right on two counts. I am an author, and what you're reading now is my book about what it's like to be legally blind. My hope is that parents of legally blind children will find something useful in these pages. Your son or daughter has just as much potential as you think they do. Their chances for a bright and successful future are better than you may know. Partially sighted is just one small part of WHAT they are. It's not WHO they are.

Chapter One: What Does It Mean To Be Visually Impaired?

Parents who do not wear glasses or contact lenses have a hard time relating to the vision problems that their legally blind sons and daughters will face later in life. Well-read moms and dads may be able to grasp the nature of the challenge intellectually, but they won't fully comprehend the scope and scale of their child's disability until they've had some experience with it. That may sound scary, but there is one positive thing to remember. You and your child will be learning about their disability at the same time. That shared experience will bring you closer together. It will also allow you to be a more powerful advocate for them in the future.

Sharing the learning curve with your son or daughter will enhance their self-esteem and improve their ability to speak for themselves later in life. If you can embrace them for who and what they are, they will know that acceptance from others is possible. They will come to understand that being visually impaired doesn't mean they are worthless or deserving of prejudice. As they reach adulthood, they'll desire and strive for the same kinds of personal and professional respect that you do. They won't think of themselves as helpless. They won't let themselves be victimized.

The doctors who specialize in the study and treatment of human eyes generally agree that most visual disorders are inherited. A wide variety of undesired traits found in the DNA of both parents can mingle to create vision defects in their children's eyesight that can most often be characterized by poorly shaped eyes, or eyes that have missing parts. Defective eyes don't process light in the same way that normal eyes do. In their own way, they are like broken cameras.

The specific condition that I was born with is called Aniridia. To put it simply, my eyes are not shaped properly, and they lack irises. The iris is that colored part of your eye that surrounds the pupil. It normally contains a ring of muscles and a clear lens. There are many other 'features' to this disability which include glaucoma and macular degeneration. Like so many things related to medicine, eye problems come with their own complicated and hard to pronounce terms and definitions. The three most common infirmities associated with the eye are hyperopia, myopia, and astigmatism. It's not unusual for those disorders to be diagnosed with several complications. To make sure that this book remains small and affordable, I'd like to suggest that you be prepared to spend a few hours with your doctor over the span of several visits to discuss the specific complications faced by your child.

Hyperopia is called farsightedness. As you would expect, this means that anything close-in or nearby is harder to see than it would be at a distance. People with this condition see better when people and objects are far away. Myopia is called nearsightedness. This means that people and objects are harder to see at a distance. People with this condition see better when people and objects are nearby. Astigmatism results when everything a person looks at is foggy, blurred, or fuzzy regardless of distance. I have this condition. I am also nearsighted. My astigmatism is due in large part from the fact that my eyes have no lenses. I wear glasses to sharpen things up and take away the fuzz.

New born children are examined by general practice doctors who look for physical defects of all kinds in their patients. If the eye isn't shaped properly, they'll ask for a qualified eye care specialist (called an opthomalogist) who will take a closer look with very precise tools. That's when and how they'll know if there are parts missing from your child's eyes. This is how my own parents got the news. These highly detailed examinations are totally painless to the child. Early detection gives your doctor a better chance of treating your child's condition. More importantly, that early warning allows you a chance to get used to the fact of your child's disability. The sooner you come to grips with it, they better off you'll be.

As your child gets older, they'll be tested for visual acuity. This happens when their eye doctor will ask them to read the letters and numbers off a snelien chart. You've done this many times yourself. The chances are good that you'll be in the room with your son or daughter while they do this. Those of us who are legally blind can't read very much of what's on that chart. Most eye charts have between sixteen and twenty lines of numbers and letters on them, ranged large to small in size. I have never been able to read anything except the largest of those symbols.

The eye chart is just one tool that will be used by your family opthomalogist to determine your child's visual acuity. Normally sighted people are said to have 20-20 vision. This means that they see things clearly and without glasses or contact lenses at twenty feet. Twenty feet is the standard benchmark for all vision tests. It's very common for legally blind people to have visual acuity ratings of 20-800. I have a visual acuity of 20-400. That means that whatever I can see at twenty feet can be view by others at four hundred feet.

You may not know it at first, but it really is up to you to decide how your child learns about their limitations. Doctor visits will be what you make them. If you react with fear, it's likely that your son or daughter will assume that they should be afraid, too. All children, including those with birth defects, learn to be confident or insecure based on how their parents deal with them. You'll have this influence over them until they leave home. Reacting positively to the professionals who can diagnose and treat your child will take the mystery out of those early visits to the eye doctor.

Chapter Two: What's It Like To Be The Parent Of A Legally Blind Child?

Blindness is one of the more difficult forms of disability to live with. This is true for both parents and children. The hardest part about being legally blind is that you're not quite sighted, and you're your quite sightless as most people understand the definition of the word "blind." This in-between status will make it harder for teachers, friends, and the people you work with to classify what your son or daughter is or isn't. Being the parent of a visually impaired child means knowing (approximately) how much eyesight your child has. Your ability to talk about this with other people can mean the difference between accept and rejection for you and your offspring.

Parents who understand the nuts and bolts of their child's's condition may still have a hard time talking about it with others. I know that my own parents didn't like to talk to their friends and neighbors about my disability. The truth is that you will eventually face the same prejudices that your son or daughter will have to overcome. Being the parent of a legally blind child means that you'll have to overcome the same obstacles, plus a few more than are unique to your circumstance as a mother or a father.

The birth of a child has the potential to change any parent's world view. Moms and dads who have no medical problems may hold certain prejudices that they are forced to confront when a doctor tells them about their child's birth defects. Some of these prejudices form naturally. Others ar the product of things that we've learned. The very tall among us may not think well of the very short. Those with a lot of muscles may hold low opinions about those who aren't as physically powerful. Those who can see well without glasses may decide that they are better than those of us who are blind.

It's not unusual for some parents to hold on to those prejudices, even after they know the truth of their child's condition. I've met more than a few moms and dads who continue to relish their prejudices...so long as everybody understands that those hates don't apply to their child. We can't all be saints, but we don't have to be sinners, either. Only you can decide when, where, and how, to give up your prejudices. For many, the arrival of their legally blind son or daughter is enough to put out those fickle flames of smug self-indulgent superiority.

My parents were born and raised in strict and deeply devote families. My mother was perky, popular, and fashionable. My father was a handsome track star on his way to a meteoric military career. Both were frugal, with few vices. A tenant of their faith at that time was that birth defects were a punishment from God. The news of my blindness hit them hard. My mother was quick to change her mind. She accepted me for who and what I was. that opinion never changed until the day she died. My father was a tough sell. The knowledge of my disability hurt in ways that I wouldn't understand until I was fifteen or sixteen years old. So far as I know, he didn't give me his official seal of total and unconditional approval until I graduated from college.

Successful parenting means more than providing transportation, food, shelter, and clothes for your children. Being the mom or the dad means being a good example. It means being somewhat like the kind of person that you want your son or daughter to be when they strike out on their own . that's going to require that you do more than teach, protect, and advocate for your partially-sighted progeny. To be truly successful, you'll need to put aside any prejudices you may have about what it means to be disabled.

My parents didn't know anyone else who had a "broken" child when I was born. They had no source of information (like this book) to fall back on. So...they made it up as they went along. They were shocked to discover that some of their friends turned away from them. They had their feelings hurt when some of the people they went to church with had harsh words. They suffered quietly when members on both sides of the family made disparaging remarks.

Your child's blindness does not define who they are. It does not prevent them from being a successful adult. Their lack of normal eyesight doesn't curse you with bad luck or damn you to a fiery Hell. The fact of their disadvantage will, however, prove beyond any doubt who your friends really are. Intolerance can be an invisible stain on anyone's character. Friends, family, and associates who would pass hostile judgement on you because of a birth defect that you couldn't predict or prevent have larger issues of their own.

The need to feel superior to others can be found in the most unlikely people. I've seen this weakness demonstrated by some of the most outwardly humble and intelligent men and women. Being the successful parent of a legally blind child means confronting those dark social forces so that your child will not suffer from them any more than is preventable. The example you set forms the basis of your child's understanding of themselves and their unrealized potential. When my parents stood up to their detractors, they showed me how to best speak for myself later in life. When they accepted me without hesitation, reservation, or condition, I learned to be tolerant.

Chapter Three: What's It Like To Be A Legally Blind Child?

The definition of legal blindness varies. U.S. Federal source material says that the person classified as legally blind must have a visual acuity rating of 20-400 or worse. In many States, the law says 20-150 for the purposes of denying driver's licenses. For the average visually impaired child, none of this matters until they're about ten years old.

From birth 'til they can walk, most legally blind boys and girls do what infants do best. They eat, sleep, and deprive their parents of sleep in the same way that fully sighted babies do. As you may already know, it takes one to three years for the average sighted child to develop their full distance vision. As their visual field expands, they take interest in people and things that are far away. As a legally blind baby, I had no distance vision. Medical records from that period suggest my distance vision was less than two inches until I was perhaps two years old.

According to my mother, I spent a lot of time with my eyes closed until I could walk. As an adult, I've seen this behavior exhibited by other partially sighted infants. There's not much to look at, but everything to hear. When we lack one of our five senses, its common for the rest to become more sensitive. Partially-sighted children may not be able to see very well, but they may develope excellent hearing.

It may surprise you to know that your partially-sighted son or daughter could learn how to develope a "sound picture" of the room they are in. Even as an adult, I do this without thinking about it. This is something that completely blind people of all ages do every day. It becomes a reflex. In much the same way that you can learn how to master the use of power tools, we learn how to interpret what we hear. Practice makes perfect.

Just as no two children are alike, you should know that no two cases of legal blindness are alike. Partially-sighted is exactly what it sounds like. Partial, meaning "some." It'll take a lot of trial and error for you to learn the extent of your child's limited visual capability. Even with the help of a doctor, you may have to wait until your child can talk before you'll be able to really understand what they can or cannot see.

Blind babies need love, too. Physical interaction with your child may actually count for more than it might with a fully sighted child. Poor eyesight does not diminish curiosity. It's a good idea to remember that all babies, regardless of their health, pay attention to the emotional state of their care givers. Your child relies on your "vibe" to know what's good and what's bad. They may not be able to see what you look like, or read your facial expressions, but your legally blind son or daughter knows every sound you make. Like all non-deaf babies, they will eventually figure out when you're talking "at" them or "to" them.

Legally blind children have the same mental, physical, and emotional needs as their fully sighted counter-parts. Parents of partially-sighted children should keep this in mind when they feel the urge to "step back" in an effort to develop some "emotional distance" between themselves and their children, whom they may perceive as being too delicate. My own parents struggled with this temptation. My mother was afraid that she'd break me, and my father wasn't sure I could handle the rigors of being the accident-prone child that I was.

As they find their words, your son or daughter will also be finding their place in your world. Because you are their soul source of information for most things, they'll tend to think of themselves as you think of them. Without ever knowing it, my father sewed a huge minefield of doubt that plagued me for many years. By the time I was five, I had just enough words in my vocabulary to understand that his prognosis for my future wasn't good. In his mind, being legally blind meant bad things. When he talked about me in the presence of other people, his words indicated that negativity.

Until they have enough words to ask the questions that you dread, your son our daughter will take you at your word. If you say they are good, they will think of themselves positively. When they ask you the hard questions about their blindness, it won't hurt them so much because they won't fear the answers. My mother's words contrasted sharply with what I heard my father say. In her mind, there was no doubt about what I would eventually become. Her warnings scared me when she talked about the troubles I would face. Her optimism filtered through even when she talked about me in the presence of other people.

It's been my experience that some parents from all walks of life can go out of their way to impress on their kids "what" they are, instead of "who" they are. As the mom or dad of a partially sighted child, you're in a unique position to avoid this mistake. People with disabilities can be raised to think of themselves as the embodiment of their disadvantage. When ""what" they are becomes "who" they are, it's not likely that they will reach their full professional potential. "I am blind" can become their justification or their excuse for everything. In your role as parent, you have it in your power to decide what it means for your son or daughter to be legally blind.

Some time after my eighth birthday, both of my parents knew that I was not my blindness. I can still recall the moment when I knew that my father was comfortable with who I was, and what I was. In a public place, he talked with a friend of the family. "He can't see very well, that's all." This may not seem like much to you, but it meant everything to me. That small attitude shift told me that it was okay to be legally blind.