Common Questions Asked by Parents of Children Who Are Visually Impaired
Content provided by the National Eye Health Education Program Low Vision Subcommittee, chaired by Mark Wilkinson, O.D. University of Iowa Carver College of Medicine, Department of Ophthalmology and Visual Sciences.
- What is a low vision evaluation?
- Why is a low vision evaluation important?
- How can the results from the low vision evaluation be used to make recommendations on educational plans, rehabilitation, and low- and high-tech devices?
- My child did not seem to have any vision at birth, but now is more visually aware. Is this normal, will vision continue to improve?
- What does my child see?
- Will my child be able to attend regular schools, or will specialized schooling be required?
- Should my child learn braille or use large print?
- Will large print result in less eye strain or a longer reading distance?
- What can be done to increase my child's reading distance?
- Why does my child hold things so closely or sit so close to the TV?
- Will glasses help my child's vision?
- Should my child who is visually impaired play sports?
- Will my teenager be able to drive?
- What is nystagmus?
- Why does my child with nystagmus tilt and turn her head?
- Can nystagmus be corrected?
- What does the future hold educationally, vocationally, and functionally for my child?
- How will current research improve my child's vision?
- Are there any medications, surgeries, or eye transplants available at this time to restore my child's vision?
- What about gene therapy and/or stem cell therapy?
Answer: A low vision evaluation, also referred to as a low vision examination, is a specialized clinical eye examination to assess the visual abilities and needs of individuals who are visually impaired. An ophthalmologist or optometrist who has completed additional training in the area of vision rehabilitation will conduct the exam. The low vision evaluation is similar to the usual exam conducted by an ophthalmologist or optometrist, but will include an assessment of needs and functional vision. Components of the evaluation focus on helping children maximize their usable vision through low vision devices and strategies for the following tasks:
- Near tasks (those that are closer than 16 inches)
- Intermediate tasks (those that are 16 inches to 3 feet)
- Distance tasks (those that are beyond 3 feet)
The examination will include getting complete general and eye health histories of your child and family. Measurements will be taken of your child's visual acuity using special low vision test charts to more accurately determine a starting point for gauging the level of vision loss.
Visual field testing may also be performed to determine if there is central vision loss, peripheral vision loss, or tunnel vision. Additional tests may include assessing your child's depth perception, the ability to distinguish colors, and contrast sensitivity.
In addition, the specialist will discuss how your child can function with the existing vision and take part in activities such as reading, watching TV, travelling independently, and participating in hobbies and other interests.
After examining your child, the specialist in low vision will explain what low vision techniques can help improve your child's visual functioning, including optical devices and how to use them. To learn more, see Eye Care Professionals Who May Work with Your Child.
Answer: The results of the low vision evaluation provide information about how your child will be able to use the vision available to do specific tasks in the classroom, at home, and in the community. Based on the evaluation, the doctor may make a referral for additional medical or surgical eye care, or prescribe low vision devices. With your permission, the results of the low vision evaluation can be shared with your child's educational team to assist them in deciding what tools and strategies would be most helpful to use with your child. While the team consists of the professionals who work with your child to plan an education, every child's team will be different, depending on the age of the child as well as the particular needs of that child and family.
3. How can the results from the low vision evaluation be used to make recommendations on educational plans, rehabilitation, and low- and high-tech devices?
Answer: The low vision evaluation will help to determine if your child qualifies as someone with a visual impairment and is in need of specialized services. Young children may need early intervention services to help them achieve developmental milestones such as rolling over, crawling, walking, and talking, in a timely manner. Helping your child reach full potential may also require rehabilitation services from a teacher of the blind and visually impaired, a certified orientation and mobility specialist, an occupational therapist, or a physical therapist. Finally, the low vision evaluation will provide you and your child's educational team with recommendations for both low-tech and high-tech devices to enhance your child's remaining vision and, as appropriate, offer alternative approaches that do not involve using sight. To learn more about services for children with visual impairments, see the Overview of the Service System for Visually Impaired Children Toolkit.
4. My child did not seem to have any vision at birth, but now is more visually aware. Is this normal, will vision continue to improve?
Answer: Vision is a learned sense, so it is not uncommon for a child with congenital visual impairment to appear to have little or no useful vision shortly after birth. This can result in an incorrect diagnosis of no useful vision. Children with a stable visual condition, such as optic nerve hypoplasia, albinism, achromatopsia, or cortical visual impairment, often show visual responses as they mature. Typically, the child's vision will not reach its highest level until 8 to 10 years of age. This is why visual stimulation activities and the general use of vision in the early years of life are so important. Unless there is some correctable condition such as a cataract, rarely does vision continue to improve after age 10.
Answer: Depending on your child's level of vision, what he or she sees is most likely similar to what you see, just with less detail. This is especially true the farther things are away from your child. For example, a child with best-corrected vision of 20/200 is not looking into a black hole at a certain distance. Your child can see objects such as people, cars, and trees, but until he or she gets closer to the objects, does not see detail as well as a person with normal vision. In the case of the child with 20/200 vision, she or he would have to be 10 times closer to see with the same detail as someone with 20/20 vision. For example, a child with 20/200 vision would see his or her mother in the distance, but would not be able to recognize the design on her blouse until she or he was 10 times closer to her than the person with 20/20 vision would need to be to see the design.
Answer: To some extent, the answer to this question will depend on the state in which you live. The vast majority of students with visual impairment or blindness attend local community schools. Most attend regular classes and receive separate instruction from a teacher certified in the education of children with visual impairment or blindness. In most states, there are also special schools for the blind.
Many toddlers (ages 3-5) with visual impairment or blindness attend regular day care, nursery, and preschool programs. In these settings, they receive specialized services from itinerant teachers who may be an early childhood specialist or a certified teacher of children with visual impairment or blindness. There are also preschool and early childhood programs that specialize in blindness and visual impairment.
Answer: Your child's primary method of learning, or learning modality, will be determined by the educational team as part of the Individualized Educational Plan (IEP). Learning modalities are visual, tactile, and auditory. Many people with low vision find it useful to use a combination of learning modalities. The IEP will be developed, monitored, and modified throughout your child's academic career with input from the educational team, the eye care provider, a specialist in low vision, the parents—and when appropriate, the child.
For many children who are visually impaired, using regular, standard print, with or without low vision devices, may be preferable to using enlarged print. Even if using large print may be efficient for your child now, there can be certain drawbacks:
- Large print is not always available. When your child goes to a store, the price tags and menus will not be written in large print. Learning to use a magnifier or other low vision device to read standard print will make your child more independent overall.
- Some children feel uncomfortable using large-print books because they look different from the books and materials classmates are using. Large-print materials often are also longer, bulkier, and more difficult to carry than standard-print materials.
- As your child progresses through life, most college texts, workplace reading materials, and recreational reading materials will not be available in large print.
For these reasons, if a child with low vision becomes proficient in using standard-print books, with or without an optical device, the transition to college and the world of work will be easier.
When vision is reduced to a level where low vision devices will no longer work, braille and some auditory devices can be used with appropriate educational assistance and training. For more information on different approaches to learning, see Overview of Alternate Media.
Answer: Research has shown that large print does not result in being able to read text from a greater distance, as one might have expected. Because large print does not result in the ability to read text from a longer distance, there is no reduction in eye strain. Using large-print materials, however, causes a reduction in reading speed because of the larger head movement needed to work with these materials. This is one reason why using large print is not a good long-term solution for a child with visual impairment. In addition, large print is not always available. For example, when your child goes to a store, the price tags and menus will not be written in large print. Also, as your child progresses through life, most college texts, workplace reading materials, and recreational reading materials will not be available in large print.
Answer: Your child naturally uses what is called relative distance magnification to better see what she or he is reading. By holding materials closer, those materials are bigger and easier to read. There are only two ways to increase your child's reading distance. One is with the use of a reading telescope, which provides a magnified view at a longer working distance. Because of cost and cosmetic considerations, in addition to the inherently small field of view of all telescopic devices, reading telescopes are not a good solution for most children. Alternately, electronic magnification devices can be helpful in increasing reading distance because they provide the child with a magnified view and an enlarged field of view that allows for a longer working distance. The problem with this solution is that your child would now have to use one of these devices to be able to read at a longer reading distance, which creates a situation in which the availability of the device becomes an issue. Read Low Vision Devices: An Overview, to learn more.
Answer: Children naturally use what is called relative distance magnification to be able to see better for both distance and near-vision targets. This includes the use of reading materials and watching the television. For example, a child who moves his/her book from 16 inches to 4 inches away has made the book appear to be 4 times larger, through the use of relative distance magnification. As you get closer to an object, such as a book, it appears bigger.
Likewise, by sitting closer to the TV, children are able to see the images as well as their normally sighted peers. If your child has best-corrected vision of 20/100, she or he will need to sit 5 times closer to the TV than a peer with normal sight (20/20) does, to see the TV with the same clarity. By decreasing the viewing distance, they are changing the relative distance to the TV, which is how relative distance magnification works. As you get closer to an object, such as a TV, it appears bigger.
Answer: Glasses may be of benefit to a child's distance and near vision. If the child has myopia (nearsightedness), hyperopia (farsightedness), or astigmatism, it is possible that vision will be enhanced with the use of conventional glasses. The amount of improvement is often less, however, for a child with vision loss from a retina, optic nerve, or brain problem than it would be for a child with a similar prescription who does not have these underlying vision problems. This is because glasses focus the image of the object being viewed on the retina. The retina then needs to detect the image clearly, send a clear signal through the optic nerve to the occipital lobe of the brain, where the retina's electrical signal is interpreted into a visual image. If there is a disruption along this pathway causing reduced vision, that condition will often minimize the effectiveness of a correction from glasses. For this reason, it is important to be sure that the prescribed glasses actually make a difference in your child's distance or near-vision abilities before purchasing them.
In the second decade of life and beyond, many children with vision impairment find it beneficial to have a near-vision correction. In fact, as we age, most people eventually need reading glasses because of the decreasing ability of the eye to focus on close-up objects. This need simply comes sooner for a child who is visually impaired, because of the naturally closer working distance she or he uses.
Answer: Physical fitness is important for everyone. Every child should be involved in physical activities in which they can safely participate. It is important for children with visual impairment to learn the basics of different sports and participate in those sports they enjoy. For children who attend school, the student's physical education teacher can adapt a program that will allow the student to stay physically active without endangering his or her eye health. Your child's eye care provider can be another source of information if there is a question about your child participating in a specific sports activity. To learn more, read Inspiring Your Child to Become Involved in Sports and Physical Activities.
Answer: Driving rules and regulations vary from state to state. If your teen has a visual acuity between 20/50 and 20/200 and has normal or near-normal visual fields, he or she may be able to become licensed to drive, at least on a limited basis. In some states, driving requires the use of a spectacle-mounted telescope. In others, it simply requires passing a behind-the-wheel driving test to demonstrate that the person with a visual impairment has the ability to safely operate a motor vehicle.
As car technology advances, smart cars will help all drivers to be safer on the road. For example, talking GPS technology, which is readily available, is helping to address concerns about the ability to read street signs. With advancing technology, more people with low vision may have the opportunity to demonstrate their ability to safely operate a motor vehicle. You can learn more by reading, Is Low Vision Driving an Option?
Answer: Eye fluttering is called nystagmus [pronounced ni-stag-muhs]. Nystagmus is a condition that involves involuntary, rapid, repetitive movements of the eyes from side to side, up and down, or in a circular motion. Nystagmus may be present at birth or, less commonly, may result from disease or injury.
Answer: Many people with nystagmus will adopt a head position, chin up or down, left or right, to slow the nystagmus. This head position is called the "null point." This is the point where the individual has the least amount of nystagmus and therefore, the best functional vision.
Answer: Currently, there is nothing that can be done to correct the underlying cause of nystagmus, which is a congenital visual impairment. Surgery can be done to move the eye muscles so that when looking straight ahead—versus adopting a head position with chin up or down, left or right—the person perceives that he or she is at the null point. For more information about nystagmus, go to www.nystagmus.org.
Answer: For a child who is blind or visually impaired, there are more options today than ever before to enhance functional vision and use other senses more effectively. There are a variety of low vision devices to help people with visual impairments see more clearly. There is also a range of low vision services that can provide assistance in making the best possible use of your child's existing vision. In fact, the Individuals with Disabilities Education Act requires that, beginning at age 14, students receive transition services to prepare them for life after high school. With the use of ongoing low vision services and other assistive means, the expectation is that your child will graduate from high school, get advanced training either in college or a vocational training program, and then become an independent, self-supporting adult.
Answer: There is a variety of research underway to prevent further vision loss once it has begun, as well as to reverse congenital visual impairment and vision loss that has occurred for various reasons after birth. Over the next 10 to 20 years, it is expected that gene therapy, stem cell treatment, and visual prosthetic devices will be able to help improve vision. It is important to understand, however, that research in the near future will not be able to restore vision to normal. For this reason, it is necessary for your child to have regular low vision evaluations to make sure that he or she continues to receive the proper assistance to function at his or her highest potential.
19. Are there any medications, surgeries, or eye transplants available at this time to restore my child's vision?
Answer: Depending on the cause of your child's vision loss, there may be medicine or surgery that could keep vision loss from getting worse and potentially improve vision. Currently, and for the foreseeable future, there is no way to connect the optic nerve of a donor eye to the optic nerve of a recipient eye. For this reason, whole-eye transplantation is not possible. Cornea transplantation has been done for decades and this surgery is very successful.
Answer: Based on the success of a gene replacement treatment trial that is currently underway for one form of Leber Congenital Amaurosis, it is expected that eventually, gene therapy will be used to treat additional visual impairment conditions. Currently, stem cell therapy is being used successfully for some conditions that involve the cornea. Stem cell therapy research is also in progress for treating retinal diseases. It will probably be at least 10 years, however, before stem cell therapy will be used as a regular treatment option for conditions that cause retina-induced visual impairment or blindness. If you want to learn more, see Progress Being Made in Research with Stem Cell Therapy and Corneas.