Are You the Parents of A Blind Child?
"Your child is blind!"
Hearing those words was almost certainly among the worst moments of your lives. You imagine yourself spending the rest of your life caring for a child who cannot be expected to accomplish much, a baby who will never work, a youngster who will grow up measuring out his or her life with what he or she cannot do rather than with what he or she can accomplish.
You are not alone! More than 600,000 children in the United States live with some degree of visual impairment. Of these, over 95,000 are unable to read newspaper print, and over 50,000 are legally blind, meaning that their visual acuity with corrective lenses is less than 20/200 in their better eye or that their visual field spans less than 20 degrees. It is estimated that more than 1.5 million children in the world are legally blind (bvi.growingstrong.org).
If you have found this white paper, you may have already discovered lots of other resources on this topic. However, in case you have not, or if you are looking for a central resource of additional excellent information that can help you, we suggest that you visit the following web site: http://bvi.growingstrong.org/.
The American Foundation for the Blind (AFB) has also partnered with NAPVI (the National Association for Parents of Children with Visual Impairments) to create a comprehensive web site which you will probably find to be an excellent resource for most of the questions you may have. The web site is: www.familyconnect.org/parentsitehome.asp.
The purpose of this particular white paper is not to provide you with information that you can find elsewhere. Instead, the intent is to let you know that there is a resource that is underemphasized by professionals that is vital to the well-being of your child and to your future as well. That resource is the American Council of the Blind (ACB) and its members. We work closely with NAPVI and AFB; NAPVI often holds programs at ACB national conventions so that parents and children can get a chance to interact with successful blind people and get their burning questions answered by blind people, who base their answers on their own experiences.
At the heart of this paper is a simple truth. The real experts on the subject of blindness are blind people. We use the technology with which your child must become familiar. We do the jobs your child will eventually be trying to find. Most importantly, we live the life your child must live 24 hours a day, seven days a week. Over the next few paragraphs, we will highlight some of the issues with which you will have to deal and offer advice to guide you toward the light that is at the end of what may seem like a very long, dark tunnel.
The First Step: Getting Help
When you first discover that your child is blind, you need all the help you can get. You need to know who can help and what kind of help you need. Other parents and agencies that serve blind children are going to be of immense help, but those of us who are blind can help too. We know the system. We have used it. Call on us to help you make sure you are talking to the right people and to help you move the bureaucracy along. It is crucial to get services started quickly. Blind children have a whole set of skills they need to learn. Studies demonstrate that early intervention makes a huge difference in the rate at which your child will adapt, learn, and develop into a well-adjusted, happy, contributing member of society.
Start by calling our national office at 1-800-424-8666. Staff members can put you in touch with someone who lives close to you and who can become your advisor and advocate as you begin the process of connecting your child with the systems that are so essential for his or her success.
Many parents believe that getting involved with other blind people is the last thing they want to do. They have this highly mistaken image of blind people that is based on TV programs, movies or books they have seen or read. Consequently, they fear that, if their child associates with "those people," he/she will turn out as helpless and dependent as all of those wrongly portrayed blind characters. Nothing could be further from the truth. Whether you like it or not, your child is blind and may be blind for the rest of his/her life. By isolating your child from other blind people, you are possibly depriving your child of some of the best role models, experiences, education, and learning he or she can get. Blindness is not just a condition. It is a way of living. Many of us have learned to live very well as blind people and can help your child learn what we have learned from our vast array of experiences coping with our blindness. Blindness is a part of who your child is. Your attitude, more than anything else, will determine how he or she perceives his/her blindness. You will mold your child's perceptions of him- or herself. Just as you know your child better than most professionals, we know what it is to be blind and what it takes to lead a happy, successful life as a well-adjusted, contributing blind person, and we can share these values and insights with you and your child.
Considering Your Child's Education
Perhaps the most daunting thing you have to look forward to is dealing with the school system and your child's education. There are lots of places where you can find information about your rights as a parent. The AFB parenting web site mentioned above is a great place to start. One of the things you will discover is that you are allowed to have an advocate accompany you to meetings to plan your child's schooling each year. It will sometimes be good if that advocate is another parent or is an expert in the area you would like to change. However, our experience tells us that, all other things being equal, among the most effective advocates you can have along at these meetings is a blind person. School systems seem to accept the suggestions of a blind person about what your child needs more readily than they will accept what your expert says. This is partly because it is hard to argue with a person who has experience with the technology or approach that he or she uses every day. It is also because there is some reluctance to argue with the blind person. We in the American Council of the Blind know about what your child needs in school and can help you get it.
The most crucial decision you will be asked to make by the school system involves deciding how your child will read. There are three methods: large print, braille, or a computer that talks. In reality, your child may use all, or any combination, of these modalities. However, your child and the school system may counsel you against braille, and that is what must be discussed. A large percentage of blind people who are employed read braille. Many of them have enough eyesight to allow them to read large print, if they had to do so. The school system may tell you that braille is hard to learn and that your child really doesn't need it. That is rarely true. If there is even the slightest chance that your child's vision will change over time, insist on braille. Our members will be right with you to help. More importantly, we will be right there to help your child learn braille and to make it fun and valuable. In your community, you can almost certainly find a blind person who will work with your child on braille and help him or her learn to appreciate just how cool it is. If your child has difficulty reading large print, braille is essential. Because of your child's limited eyesight, there may be a significant limit to how fast he can read print. In that case, your child could learn to read braille and be a faster, better braille reader than he ever could be with print.
All the way through school, ACB members can be a sounding board for you as you and your child make decisions about education. We are here to assist you when and where you need our input or advice. Since we have been through most of the situations you are dealing with, we can be an excellent resource for you.
In most states, you will have access to another resource that you are highly advised to use. Schools specifically for blind students ought to play a part in your child's education. Many if not most of those blind people who are the most independent, and cope well with their blindness, have invested some time attending a school for the blind. Now, in many states, such specialized schools offer summer programs or short-term instructional courses that you can enroll your child in. These courses will give him an opportunity to learn some of the blindness-specific skills that regular schools don't have the time or expertise to offer.
It is important that you recognize that your child must become good at getting around on his or her own. He or she must learn all the skills of daily living that he or she will need when it is time to leave the nest and live independently. It is also crucial that your child acquire the skills that will enable him or her to use access technology well before college or a job comes along. So, we strongly recommend that you do whatever is needed to make sure your child receives these kinds of skills as a part of his/her educational program. Often the only way this can be accomplished is to enroll your child in a school for the blind, either full-time or at least for the short-term, specialized courses they offer.
College, Adult Life and Beyond: Let's Talk Transition
Toward the end of high school, you and your child will be asked to make decisions about the future. This process is usually called transition planning and focuses on deciding what will happen after high school is over. You and your child can make those decisions on your own, but we can help. We can put you in touch with people who are already doing the kinds of jobs your child is considering. We can help you find people who went to college at the school your child is thinking about attending. ACB has a student division called the National Alliance of Blind Students (NABS), which can also assist your child when the time comes. Most of all, we can welcome your child into the community of blind adults who are working together to make things better for people who are blind. We want to help because the children of today are our members of the future.
No matter what direction your child chooses to go, there is one more issue that is of paramount importance. Whether college or work is next, they will only fill a part of your child's life. How will he or she spend the other hours of the day? If you have done a good job as a parent, your child will have lots of choices because you will have exposed him or her to camps, to sports, to opportunities for social interaction, and to hobbies. We can help you figure out how your child can do all the things he or she wants to do. We can help you adapt games. We can help you learn about programs that are happening all over the country. But most of all, we can be examples to your child. We are already hiking and biking and skiing and swimming and playing sports. Don't forget to build fun into your child's life and use us to help you figure out where the fun is.
More Than Just Blind
This paper focused on children who only have visual challenges. We know that many of you will be dealing with children who have other disabilities in addition to visual impairment. The principles are the same, though. Use us to help you learn about all the resources that are out there. Let us help you advocate for more rather than less in the way of services. Technology has made a huge difference for children who are deaf and blind, and is making a difference for other disabilities as well. Whether your child is just visually impaired or has multiple disabilities, there is light at the end of the tunnel. And who better to join you and lead you through the dark than blind people? Together we can make a difference.