Guide: Children

This addendum is for parents and caregivers of children who are vision impaired.

Perhaps you have just heard the news that for you seems devastating: Your infant, toddler, or youngster has a vision impairment. What does it mean? What can you do? What will happen? These might be some of the questions running through your mind.

This addendum will not answer all your questions and it certainly will not ease all your feelings and worries about your child. Hopefully, it will be the start of this process. Once the initial shock has worn off and the worries placed in perspective, how you respond to your child’s diagnosis and how you treat your child is very important in allowing him/her to reach their full potential.

This addendum offers a starting point by offering some facts to help you understand the problem and a list of resources to help you find solutions. In addition, the full guidebook has many resources that will also be useful to you and your child, however we compiled ones specific to children in this addendum. There are hundreds of thousands of persons who are vision impaired living full and happy lives. You do not have to face these problems alone—nor will your child.

Conditions Affecting a Child’s Eyes

• Albinism: A hereditary condition where there is a lack of pigment throughout the eyes and many times the whole body, including the eyes. Children with albinism are sensitive to light and may also have nystagmus (shaking of the eyes).
• Amblyopia: Poor vision in an eye that did not develop normal sight during early childhood due to many possible reasons. Also called “lazy eye.”
• Astigmatism: Blurred vision caused by uneven curvature of the front refractive surface (cornea) of the eye. As a result, light rays are not sharply focused on the retina.
• Cataracts: Condition in which the normally transparent lens of the eye becomes cloudy or opaque.
• Glaucoma: A condition in which the pressure of the fluid inside the eye causes damage to the eye and/or there is inadequate blood flow to the eye. Depending on the type of glaucoma, vision loss may be present at birth, or may be acquired suddenly, or gradually. When decreased vision is gradual, it begins with loss of peripheral/side vision and usually is not noticed.
• Hyperopia: Condition in which the eye is underpowered. Also called farsightedness, a child has difficulty seeing close objects clearly.
• Myopia: Condition in which the eye is overpowered. Also called nearsightedness, a child has difficulty seeing far objects clearly.
• Nystagmus: Involuntary, rapid movement of the eyeball from side to side, up and down, in a rotary motion, or a combination of these.
• Retinitis Pigmentosa: A hereditary retinal degeneration beginning with decreased night vision and producing gradual loss of side vision. While some people with this disease will lose all of their vision, many do not and retain only some central vision.
• Retinopathy of Prematurity: Vision impairment caused by abnormally developed retina in premature infants.
• Stargardt’s (and other maculopathies): Juvenile form of macular degeneration causing poor central vision.
• Strabismus: Eyes not simultaneously directed as a result of an imbalance of the muscles of the eyeball. The lack of alignment can be in any direction.

In addition, eye injuries can cause children to lose significant sight. Prompt expert medical care is essential to limiting the damage done by an eye injury. If you notice any of these symptoms, you should contact medical personnel as soon as possible:

• Flashes of light
• Halos around lights
• Curtain or veil blocking vision
• Sudden loss of vision
• Double vision
• Dimming of vision that comes and goes
• Sudden onset of floating spots in front of eye
• Crossed eye
• Pain or redness of eye or surrounding area
• Discharge or crusting of the eyelids
• Difference in the size of the two pupils
• Swelling of the eyes
• Protrusion of one or both eyes
• Persistent irritation, watering or dryness of eyes
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Special Needs of Infants

The infant who is vision impaired is a baby like any other baby. They need to know they are loved. Lots of holding, cuddling, patting, stroking, rocking, and, especially, talking will convey that love and enable the baby to grow and flourish. Because visual information accounts for much of learning, an infant with a vision impairment has to acquire information by touching, hearing, smelling, and tasting as a substitute for or in conjunction with seeing. Encourage this behavior in the proper social setting.

Remember: It is possible your infant may have too little vision to see a person approaching. To avoid startling the child, begin talking before the sudden movement of picking him/her up. Special attention needs to be paid to common activities such as head control, turning over, sitting, finding and using hands, pulling to stand, standing, orienting, and walking.

It is critical your infant be provided with creative and varied experiences that enrich, stimulate, motivate, and encourage growth and development. Because sense of sight is impaired, it is vital that the other senses be stimulated in the infant. Touch of a variety of tactile surfaces and shapes provides much needed spatial information to the developing infant. The other senses also need to be bombarded with stimuli. Sound, taste and smell all contribute with touch in compensating for the loss of information coming from vision.

Agencies can help parents acquire and invent toys, booklets, games, and interactions that may help development of senses. That “development” that MUST NOT BE DELAYED. This may seem like a major task, but you are not alone. Infant/child early intervention programs are provided by public school system “vision teachers” in all jurisdictions comprising the Washington Metropolitan area. Additional resources can be accessed through national, state, and local public and private agencies serving children with disabilities, including low vision services, rehabilitation (occupational therapists and physical therapists), and privately contracted vision rehabilitation professionals.

The help you may need for your child with impaired sight may often be located through agencies and organizations who generically use the word “blind.” Using services from these organizations does not diminish the fact that your infant/child has usable sight. In fact, most infants who are vision impaired have remaining vision ranging from an awareness of bright light to the ability to see everything but fine print. Research shows that even children with severely impaired vision learn to use that tiny bit remarkably well.

Questions to Ask Your Vision Care Specialist

• What is the cause of my child’s vision loss? What is it called?
• Can this eye condition be corrected? If so, how: glasses, surgery, etc.?
• When should glasses be worn? At all times, for distance only, for close work only?
• Is the child’s vision stable? If not, what changes should be expected? How rapidly should one expect changes to occur?
• What is the distance acuity, corrected and uncorrected? What does this actually mean?
• What is the near acuity, corrected and uncorrected? What size print can my child readily distinguish or read? At what reading distance?
• What are my child’s visual fields? If possible, draw a diagram for me of my child’s visual fields.
• Do the eye muscles work as they should? Does my child depend on one eye more than the other? If so, should anything be done about this? Does patching of one eye help?
• How will my child’s eye condition affect his/her daily functioning?
• What problems should be expected: light sensitivity, eye stain, fatigue, headache, squinting, color blindness, lack of depth perception?
• What kind of light is best: low, average, above average intensity? If special lighting is needed, how should it be positioned: overhead, at the back, etc.?
• Should my child’s physical education program be restricted? In what way?
• What information should be shared with people who interact with my child?

Feeling Good and Having Fun

A child’s feeling about themself is developed in early life. Self-esteem is important in later life for reaching full potential and being able to cope with problems and encounter new challenges. As a child with impaired vision develops, he/she needs the same opportunities as other children for recreation and social interaction with other children – both sighted and vision impaired.

It is possible a child with a vision impairment is rejected by other children. This is painful both to parents and the child and may promote negative feelings in the child. Parents can help neutralize their child’s reaction through open communication and shared feelings.

Parents should encourage their children to continue participating in activities with other children, while also realistically acknowledging the challenges of impaired vision. The child with impaired vision should be encouraged to run, exercise and play games with other children even though parents as well as the child may be anxious about such activities. Sports like bowling, skiing, swimming, canoeing, badminton, horseshoes, hiking, bicycling, running and exercise programs can be enjoyed by children with varying degrees of vision impairment. Sometimes a sport or game may take a child with impaired vision longer to learn, but there is equipment available to enhance the enjoyment of many sports. With a little extra time and work, a child with impaired vision can join in most sports and games. This will be time well spent.

While many of the resources available in this low vision resource guidebook are helpful to children as well as adults, there are also many resources useful to children and their guardians. See below the dozens of resources available specifically for children’s (and their guardians’) unique needs. Please note: Resources are divided by category. If a resource is only available in a specific jurisdiction, this will be identified in the description.

In addition to the resources below, contact your child’s school to learn what they may already provide. In addition, contact your county/state special education offices in order to receive specific guidance on the education system.

Consider the rehabilitative services in the full guidebook. In addition, for assistive technology, look in the full guidebook as well.