Understanding Challenges Faced by Families

Families differ in their attitudes and approaches to dealing with the challenge of having children with vision impairments.

In order to more fully understand your students' past experiences and current potential, it is helpful to have some idea of the challenges that they and their family members have faced and the ones with which they may still be struggling. Each family will have achieved different kinds and degrees of coping strategies, depending on whether the child's disability was evident early on or only developed recently, whether or not the child has multiple disabilities, as well as on the emotional and social resources of the family, and the outside assistance they have been able to utilize. While pity is not fruitful, your sympathetic understanding is an important part of creating a good working relationship with the family.

When parents and other family members first learn of their child's vision impairment, they often feel overwhelmed with grief. Often they have culturally defined stereotypes about blindness with which they must contend and, hopefully, go beyond, with the child they know and love. For example, Vaughn (1998) states, "The last century has witnessed remarkable changes in the life choices available to many women and men who are blind. Some blind people at various places around the world are well employed and are participating as much as they wish in their societies. Others struggle at the very edge of existence, continuing to live by receiving food and shelter from others. In many places, a life of mendicancy is the only way of earning one's bread" (pg. 3)

Vaughn (1998) reminds us that, "Everything we know and say about blindness, we have learned from others in the culture and society in which we live. We may remember jokes or often repeated vignettes such as that of the four blind men feeling an elephant and not getting a complete picture. We acquire definitions from medical doctors and from social and behavioral scientists who study blind people. We also accumulate ideas and images from service providers, educators, and our mass media" (pg. 23)

Parents in rich industrialized countries may hold back from fully using professional support because of the feeling that it doesn't meet all of their needs and/or because the professionals are perceived as bureaucratic and unresponsive to their deepest concerns. They may feel very protective of their child, and be afraid to expose her or him to unfamiliar situations. Some families may also be embarrassed to have it known that they have a child with a disability. Those in poor countries may not know where to turn because of the lack of services, or they may also want to hide their child because they feel ashamed that she or he has a disability. When the family immigrates to a country with more services they may still feel hesitant to expose their child and themselves to public scrutiny.

If a child has some residual vision or hearing, parents and other family members often find it difficult to figure out how much the child can actually see or hear. Not all children are evaluated by medical specialists early on. But, even when the child has been diagnosed with a vision impairment, many families desperately want to believe that she does not have a severe sensory impairment. The child may not be aware of the difference between what she can see and what others can see, and further confusion may be caused as she learns to compensate for her vision impairment by using other senses. By the time the child arrives in your class most parents may have a fairly good idea of the child's vision limitations, but even then you will need to adjust to not taking for granted that she can see what the other students can.

When a very young child has little or no vision, she may be slow in learning to respond to people who do not know how to communicate with her. Parents and other family members who are caretakers may find simple encounters with other adults to be painful. For example, parents may find it depressing when their blind infant doesn't know automatically how to hold up her head, and has to be taught to turn toward a person who's talking to her. It can be painful for parents at the grocery store when other adults stop to admire their baby and then don't know what to say when the baby doesn't return their smiles or waves.

Many young children with vision impairments take a longer time than usual to learn to do simple self-care tasks, such as tying shoes, matching clothing, or buttoning up a coat properly. Others may have difficulty moving around a room on their own or interacting with other children. If a child with a sensory impairment arrives in your class is still unable to perform such activities, it is not necessarily a sign of a learning disability or cognitive delay. It may only mean that the family has not known how to teach such self-sufficiency skills and they have not yet received the assistance of a rehabilitation or daily living skills teacher. If the lack of such skills is interfering with the child's participation in the class, it is appropriate for you to consult with the parents and a vision specialist teacher about getting the child some evaluation and needed training.

As a teacher, you may be concerned about how independently, safely and efficiently students with vision impairments will be able to get around the room, school yard and other places where you hold your classes. For most children with vision impairments providing orientation and mobility training will make getting around possible and doable. The required skills are best taught by professional Orientation and Mobility specialists. Those children who were given orientation and mobility training earlier in life may only need some orientation assistance from family members and school staff. Others may need only some short sessions to familiarize them with the new environments. Those who have had no prior explicit instruction in orientation and mobility skills before coming to school will need to learn these skills during the school day. The orientation and mobility instructor can also help the family and school staff (including you) to learn to assist the children in developing the specific skills that they need.

As children with visual limitations enter school, their families will generally have some concerns about their social, financial and academic futures. You also need to be sensitive to the fact that even as parents become more accustomed to their children's vision impairments, new contexts, such as field trips to museums and amusement parks, can cause them to worry. When possible, parents and other family members should be encouraged to be involved in school activities in order to offer their children support. At the same time the teachers should work together with the parents to develop positive strategies for helping the students to learn how to be independent. The family members can also model and demonstrate to the mainstream staff and the other children in the class the best ways to respectfully interact with and offer assistance to the child with a vision impairment.

These kinds of issues can best be dealt with when the mainstream teacher and the specialist teacher both develop good working relationships with each other and the families, as reference and support people. Through this cooperation, all three together can more effectively teach the children how to most effectively interact with the world. Both teachers can support family members in instructing others on interacting with the children.