Chapter 59 How to help the visually disabled child and family
For a child with a serious visual problem, the correct diagnosis can usually be established from the history, clinical examination, and electrodiagnostic, neuroimaging, and genetic testing. A more difficult task remains: telling the family, grieving with them, helping them to get appropriate services, and remaining an available sympathetic advocate for them and their child.
Ophthalmologists play a critical role in management of the visually impaired (VI) child; they make the diagnosis and inform the family. The diagnosis of visual impairment in a child is shattering to the family. The manner in which we convey this information can affect the family and child for years. We may expect that families should “accept the situation” but how can parents be expected to “accept” what seems unacceptable about their child? The family may express anger, fear, and resistance; aggressive questioning may follow and needs to be handled calmly and sympathetically. We should not hesitate to show our own feelings.
Parents may be so anxious during the initial office visit that they can remember little afterwards; more than one appointment may be necessary. It is important that both parents be present, if possible, and even better for them to be accompanied by a friend or relative. Most affected children appear to be blind in early infancy; the majority will develop useful vision. The diagnosis of total blindness should be avoided, unless it is absolutely certain. Refer the child as soon as possible, if available, to a VI habilitation clinic or to a neurodevelopmental pediatrician. If such services are not available, the ophthalmologist should take the responsibility with available colleagues.
Parents have to cope with heavy physical and emotional demands for years. Instead of being perfect, their new baby has a visual impairment and, perhaps, other disabilities; parents experience persistent feelings of shock, denial, grief, guilt, despair, and anger. It is not unusual for the parents to cry in the office. This is better than when they show little emotion because then they are not moving through the various emotional stages. Most mothers have guilt feelings that they have done something wrong to cause the problem. Even when they do not mention their guilt, we need to strongly state that it is not their fault. Many fathers deal with their grief by seemingly retreating from the problem: the stress on the marriage should not be underestimated.
We can offer practical and easily understood information, to help the parents, on the type of visual disorder and disability but the content and scope of information may be improved.1 Most parents need repeated explanations. Raising a VI child is very hard work for the entire family and the parents carry out the majority, only aided by the professionals.
Parents often need help to deal with the attitudes of their extended families, the prejudices of the public, and, sometimes, with complex cultural issues.2 Both mother and father must be involved in the process of habilitation; the needs of the siblings must not be neglected or they may feel ignored. Parent group discussions are helpful for educational, social, and cultural issues. Local and national support groups can be found in most countries and provide invaluable services and support. In the USA, see the National Association for Parents of Children with Visual Impairments (NAPVI) (http://www.FamilyConnect.org).
The habilitation (or rehabilitation) of VI children results from their physical, emotional, and intellectual growth responding to skilled, early intervention.3 The VI advisors must be trusted by the parents. They must be well trained and are best supported by a multidisciplinary team.
The interaction of visual loss and other disabilities on development is complex. The multidisciplinary approach is an effective way to deal with VI children. The team may include ophthalmologists, pediatricians, geneticists, nurses, psychologists, speech-language pathologists, audiologists, physiotherapists, and orientation and mobility specialists. Close co-operation between the professionals dealing with the visually impaired is a necessity even if not in a formal team.
When the parents become team members, they are more effective in the management of their children. The parents should receive copies of reports related to their child. In addition, the team are advocates for blind people, educate the community, and participate in research.
VI children who are raised in a rewarding, stimulating environment provided by loving, informed parents, who are supported by professionals, develop motor skills faster than when they are understimulated.4 However, even intelligent infants with severe visual loss, reared under ideal circumstances, may experience motor delays. Crawling and independent walking may begin late, whereas unsupported sitting and standing may be age-appropriate. Understimulated congenitally blind infants frequently develop generalized hypotonia with poor posture, delayed motor skills and poor co-ordination, and walk with a gait disturbance. When intervention is not introduced early, these problems become permanent. Moreover, physical fitness in older VI children is often poor from habitually reduced physical activity.5
Blind infants without brain damage are usually quiet, passive, and require encouragement to be mobile. They may not acquire skills through “accidental” learning, as do the sighted. Motor tasks such as sitting, pushing, pulling, jumping, and early aspects of orientation and mobility must be taught. Partially sighted children usually learn to move about normally and cannot be distinguished from the sighted, unless they are required to carry out balance activities.
The development of visual motor skills, arrangement of objects in space, and constructive play are also affected. VI children often avoid activities such as construction toys, puzzles, and drawing. When trying to use their partial sight, they often adopt head tilts or head turns, aimed at improving vision and controlling nystagmus. These and other adaptations should not be discouraged.
Visual impairment has a noticeable effect on cognition. Severe visual loss forces fragmented processing of information, as only a part of the object can be seen or felt at one time. The relationships to other objects may be lost.