Chapter 8: Working with Families

Sylvie Kashdan, B.A.; M.A.
Professional Instructor with the Kaizen Program,
Teaching New English Learners who are Blind or Visually- Impaired

In Teaching Children with Sensory Impairments: Strategies for Mainstream Teachers
Edited by Dr. Karen Waldron, Ph.D.; Michael Steer, Ph.D.; Dolly Bhargava, M.Spec.Ed.

https://sites.trinity.edu/sensoryimpariment

I. The Uniqueness of Each Student and Family

II. Understanding Challenges Faced by Families

III. Roles of Mainstream and Specialist Teachers

IV. Organizations and Web Sites

V. Deaf-Blind Resources

VI. References

I. The Uniqueness of Each Student and Family

If you are a teacher who is just beginning to instruct a class that includes children with vision impairment, you may be wondering how you can most effectively create a learning environment that is welcoming and inclusive for all your students. You may feel worried and even uncomfortable because you have not received any prior training in teaching students with disabilities.

As a teacher you already know the importance of getting to know every one of your students individually. This is particularly important when you have students with vision impairment. You need to become personally acquainted with each of them as soon as possible. As you get to know them, often students (especially the older ones) will be able to tell you what specific accommodations they might find helpful or necessary.

To assist you in getting to know your student with vision impairment’s individual needs and capacities, and to help you work with the student fruitfully on a day-to-day basis, your two best resources will be your student’s family members, as well as teachers and teaching assistants who specialize in helping children with vision impairment. You will also be able to find helpful information about the possible needs and potential capacities of children with specific disabilities by checking with organizations that are dedicated to serving them. You should especially seek out those organized by and for people with vision impairment, and organizations of parents with children who have vision impairment. It may also be helpful to browse through newsletters and journals published by these organizations. For some specific recommendations for organizations and publications that you might find helpful when you have students with vision impairment, see the “Organizations and Web Sites” link below.

First and foremost, it is important to remember that children with vision impairment are individuals with unique blends of talents and needs to the same degree as all other students. The student is shaped by his or her family, culture, and personal experience as much as by the way in which the vision impairment manifests.

Every student with a vision impairment is unique, as each child uses his or her vision differently. “Even children with similar visual acuities and eye conditions may actually see in unique ways” (Miller, 1999). For example, most children with visual limitations will not be totally blind. Many will be able to see some light and see subtle differences between colors, while others will have difficulty distinguishing specific colors. Some students will have good peripheral vision. Others will have limited peripheral vision or good central vision. Some students will be able to see objects distinctly, while others will have blurred vision; some will need enhanced contrast; some will have no problems with glare and bright lights, while others will be challenged by glare in the environment. Some students will be able to see small objects or pictures or print, while others will not; some will be able to see objects or pictures or print better in the distance, while others will only be able to see what is close to their faces; some will be helped by special glasses or lenses, while others will not. Some will have had visual impairments since birth or early childhood, while others will have experienced vision loss recently.

Children with vision impairment also differ widely in their past experiences. Some of them were raised by parents, caretakers and/or other family members who learned early on about the best practices and resources for assisting them to develop to their full potential, and others were not. Some families may have had difficulty finding service providers in their local area who specialize in helping children with vision impairment. Some children who are blind or have low vision were able to explore and interact with their environments on their own from an early age; others required and received encouragement and guidance from family members to do so. On the other hand, some children were discouraged from exploration because of family members’ worries about safety, while still others were simply left as babies to sit in one place if they did not themselves initiate such explorations. Often, children with some useable vision were precocious walkers and talkers; many totally blind children learned to walk and talk significantly later than their sighted peers; while those who had family members and service providers who encouraged them to interact with people and environments began to walk and talk around the same time as their sighted peers.

Some children with visual limitations will arrive in your class having already learned compensatory skills, mobility skills or large print or Braille literacy, while others will need to begin learning such skills with teaching specialists at the same time as they are participating in the general curriculum. Some families will have helped their child with vision impairment learn literacy skills early in their lives before arriving at school, while others will have not; some families will have been very involved in assisting the children’s progress from self-awareness and use of their senses to daily routines around the home, to exploring the outside world; other families will have been overwhelmed by their sadness about their children’s disabilities.

When children have more than one disability, such as a vision impairment combined with a hearing impairment, there is even more variation in their developed abilities and experiences. All of these factors are significant because they will affect your students’ readiness to learn literacy and achieve academic success.

It is not possible to adequately predict just what will work for specific children unless we get to know these children as individuals and observe them in the learning process. It is crucial for parents and caretakers to have a deep understanding of the child’s specific visual impairment and how the disability impacts daily life.

Given this tremendous range of possible abilities and experiences, the best strategy is to concentrate on getting to know the student with the disability directly. You can most easily accomplish this by combining direct personal contact with the students with close cooperation with their family members, the specialist teachers, and teaching assistants who will be supporting these students in your class.

II. 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 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.

III. Roles of Mainstream and Specialist Teachers

Good working relationships can best be fostered when everyone has a clear idea of her or his role and the roles of others with whom they are cooperating.

It is the role of the specialist teacher and teaching assistant to make sure that the student with a vision impairment is prepared to participate in and benefits from participating in your class by helping the child learn all of the necessary compensatory skills, including communication. It is the specialist teacher’s role to assist both you and the child’s family members to understand what specific special accommodations are needed. In this way, the specialist teacher supports both you in teaching academics and the children’s families. Working closely and cooperatively with the specialist teacher and teaching assistant can also help you to develop a fruitful ongoing cooperative relationship with the children’s families.

Your role as a classroom teacher is to create a learning environment that is as inclusive as possible and that facilitates the student’s academic learning. You do not need to become an expert in helping the student with a vision impairment learn how to perform activities of daily living or to improve compensatory skills.

As a mainstream teacher, it is not your responsibility to diagnose or treat vision impairment. It is your responsibility to develop a basic understanding of the potential needs of students with vision impairments, enabling selection of modifications and accommodations for the optimal provision of the best educational services. It is also the role of the mainstream teacher to take responsibility for working at adapting the environment to meet the expressed needs of students with visual or hearing impairments as much as possible. To accomplish this goal, the mainstream teacher must know the needs and characteristics of the specific students that impact their learning.

It is also the responsibility of the mainstream teacher to become familiar with the tools and methods used by each student, in order to be able to accommodate and meet the needs of students with vision impairment.

Although some students with vision impairment may find it initially challenging to learn to read and write because of various problems, literacy is a fundamental skill that they must learn. It is just as essential for their long-term educational and life success as it is for other children. As the classroom teacher, your role is to make children with vision impairments feel comfortable in your class while they are developing their ability to read and write using adaptive tools and methods with the help of the specialist instructional staff.

In order to most effectively include the child with a vision impairment in your class, you need to know some specifics about his or her individual capacities and needs. You should not be shy about asking either general or specific questions of both the student’s family members and the specialized teacher. It is also useful to ask the student some questions, but always be sure to do so after having consulted the adult family members, and privately, rather than in front of other children. It is important that parents understand that the purpose of your inquiry is to help better serve their child.

As soon as you know that a child with vision impairment is entering your class, you should schedule a conference with the specialist teacher and family members to become familiar with adaptations to the classroom environment which will help the child. Additionally, you can explore whether the child uses or can learn to use Braille and/or reading spectacles, magnifiers, hand-held and spectacle mounted telescopes, computer adaptations and video magnification options with closed circuit TV.

IV. Organizations and Web Sites

If the student is blind or has low vision, organizations and publications you can look to for help and refer family members to could include:

Local chapters of The National Association for Parents of Children with Visual Impairments

http://www.spedex.com/napvi/chapters.html

Local chapters of the American Council of the Blind: http://www.acb.org/affiliates/index.html

The National Association for Parents of Children with Visual Impairments, Inc. (NAPVI):

http://www.spedex.com/napvi/

Represents families of children with visual impairments, low vision, blindness and visual impairments with additional disabilities in the United States. NAPVI’s membership consists of parents, individuals with visual impairments, agencies, and professionals who support and provide services to families of children with visual impairments. The number of families who benefit from the services of NAPVI is estimated to be more than 50,000.

The ADVISOR Project: A project of the National Association for Parents of Children with Visual Impairments:

http://www.e-advisor.us

Offers information about vision impairments from the perspectives of parents, teachers, and doctors. The site has information about eye conditions, resources, and many other areas of interest. You can also email the ADVISOR Project Coordinators at

advisor@childrens.harvard.edu

with any questions or comments. Also see the article by the same name, “The ADVISOR Project” Written by Susie Ekland, in Awareness, Fall/Winter, 2004, published by the National Association for Parents of Children with Visual Impairments (see below).

Envision for parents and educators of children with impaired vision, published by Lighthouse International – http://www.lighthouse.org/text_only/t_home.html

Vision Connection web portal, Children’s Vision: http://www.visionconnection.org/Content/ChildrensVision/default.htm?cookie%5F test=1

Vision Connection web portal, Parents’ Resource List: http://www.visionconnection.org/Content/ChildrensVision/ParentsResourceList.ht m

National Federation of the Blind, National Organization of Parents of Blind Children: Support, information, and advocacy organization of parents of blind or visually impaired children. Addresses issues including help for parents of a newborn blind infant, mobility and Braille instruction, education, social and community participation, development of self-confidence, and other vital factors involved in the growth of a blind child. Publishes Future Reflections—a quarterly magazine for parents and teachers of blind children, published by The National Federation of the Blind

http://www.nfb.org/futref.htm

The NOPBC also has a listserv for parents of blind children. To subscribe, send an email message (leave the subject line blank) to: listserv@nfbnet.org. In the body put “subscribe blindkid.” If you are interested in receiving the digest version (one message per 24 hours) put “subscribe kids-d.”

National Federation of the Blind, Student Slate—the voice of organized blind students in America, published by The National Federation of the Blind http://www.nfb.org/stslate.htm

Provides support, information, and encouragement to blind college and university students. Web site:

http://www.nfbstudents.org

National Federation of the Blind, “Questions from Kids about Blindness” http://www.nfb.org/kids.htm www.nfb.org

American Foundation for the Blind, Friends and Family page at http://www.afb.org/Section.asp’sectionID=36

American Foundation for the Blind, For Parents page: http://www.afb.org/Section.asp’sectionID=36&TopicID=165

American Foundation for the Blind, Braille Bug http://www.afb.org/braillebug/

sub-site specifically for blind and low vision children

American Foundation for the Blind, DOTS for Braille Literacy (Development of Teacher Support):

http://www.afb.org/Section.asp’sectionID=6&TopicID=1 9

Published three times a year and filled with information related to braille instructional techniques and strategies, new products, resources, braille-related events and workshops.

American Foundation for the Blind, Glossary of Eye Conditions http://www.afb.org/Section.asp’documentID=2139

Learn about different eye conditions and visual limitations.

Office of the Deputy Prime Minister (UK), “Route to Safety,” “Hazard a Guess” and other games:

http://www.firekills.gov.uk/seniors/fun/

Interactive online games that educate children about fire safety using text-tospeech technology. Can be played by blind or vision-impaired children together with sighted friends or siblings.

RedNova News, Opening Blind Eyes to Science: http://www.rednova.com/news/display/?id=103422

Hands-On Book of Hubble Images allow the Visually Impaired to “Touch the Universe”

http://hubblesite.org/newscenter/newsdesk/archive/releases/2002/28/text/

Hadley School for the Blind, 2004-2005 Catalog: http://www.hadley-school.org/Web_Site/2_b_ae_and_hs_program.asp High School Program. Blind and low vision students can use this free correspondence school to suplement their on-site high school education

Hadley School Family Education Program. The Family Education Program focuses on independent living, technology, advocacy and adjustment to blindness issues. While some of the courses were written for adults who are blind or severely visually impaired, they also contain important information for a family member. Other courses have been developed specifically for family members. The first five courses are listed in a recommended sequence for parents of young children. The remaining courses may be of interest to all Family Education Program students.

Hadley School for the Blind 700 Elm Street, Winnetka, Illinois 60093 2554 Toll Free: (800) 323 4238 Phone: (847) 446 8111 Fax: (847) 446 9916 info@hadley.edu | student_services@hadley.edu

Art Education for the Blind website:

www.artbeyondsight.org

Includes Discussion Groups: Share your experiences and talk to experts. Contains five different discipline-based groups: Museums, Educators, Learning Tools, Community and Advocacy, and Theory and Research. Listservs. State-bystate or Around the World

National Coalition for Vision Health, Canadian National Standards For the Education of Children and Youth Who are Blind or Visually Impaired, Including Those with Additional Disabilities:

http://216.239.53.104/search?q=cache:zLgvPbhzyR4J:www.visionhealth.ca/Nat_ Stands_We._241003.qxd.pdf+%22Karen+Nagel%22%2Bbraille&hl=en&ie=UTF8

Blind Childrens Center http://www.blindcntr.org/infant.htm.

Delta Gamma Center for Children with Visual Impairments (2003). Family Support Services: Available to Families of Children of All Ages. from http://www.dgckids.org/programsandservices-famsupserv.htm.

Lighthouse International www.lighthouse.org

Royal Institute for Deaf and Blind Children in Australia www.ridbc.org.au

Royal New Zealand Foundation of the Blind www.rnzfb.org.nz

Texas School for the Blind and Visually Impaired www.tsbvi.edu

V. Deaf-Blind Resources

Arizona Schools for the Deaf and the Blind (ASDB), DOTS FOR FAMILIES: http://www.asdb.state.az.us/ecfe/projects.html

Ongoing Literacy for Families of Children with Visual Impairment, available on the ASDB web site, early childhood page. Designed and written by Dr. Penny Rosenblum of the University of Arizona and Linda Reed, M.Ed. of the ASDB Parent Outreach Program, it offers the opportunity to learn about Braille and how the young child might use Braille to develop literacy skills.

National Federation of the Blind, Deaf-blind sub-site:

http://www.nfb-db.org/

Deaf-blind persons working nationally to improve services, training, and independence for the deaf-blind. Offers personal contact with other deaf-blind individuals knowledgeable in advocacy, education, employment, technology, discrimination, and other issues surrounding deaf-blindness.

University of Washington DO-IT (Disabilities, Opportunities, Internetworking, and Technology) project:

http://www.washington.edu/doit/Faculty/Strategies/Disability/

Another resource for familiarizing yourself with the general capacities and needs for accommodation of students who have vision or hearing impairments.

SEE/HEAR Quarterly

http://www.tsbvi.edu/Outreach/seehear/index.htm

Newsletter for families and professionals on visual impairments and deaf-blindness. A collaborative effort of the Texas School for the Blind and Visually Impaired and Department of Assistive and Rehabilitative Services, Division for Blind Services

Royal Institute for Deaf and Blind Children in Australia www.ridbc.org.au

VI. References

Huebner, K. M., Brunhilde, Merk-Adam, Stryker, Do & Wolffe, K. E. (2004). The National Agenda for the Education of Children and Youths with Visual Impairments, Including Those with Multiple Disabilities. Revised by Members of the National Agenda Steering Committee. AFB Press.

MacCuspie, P. Ann (2002, August). Access to literacy instruction for students who are blind or visually impaired.

A discussion paper Canadian National Institute for the Blind: http://www.cnib.ca/eng/publications/access_to_literacy.htm

Miller, C. (1999). On the LOOK OUT for functional vision assessment/evaluation. Retrieved 20 April, 2005 from http://www.tsbvi.edu/Outreach/seehear/winter99/fva.htm

Pierce, Barbara, ed. (nd). The world under my fingers: Personal reflections on Braille. National Federation of the Blind. Available in multiple formats at: http://www.nfb.org/books/books1/worldbk.htm

Sacks, S. Z., Wolffe, K. E. & Tierney, D. (1998). Lifestyles of students with visual impairment: Preliminary studies of social networks. Exceptional Children, Vol. 64 (4) p 463-478.

Vaughn, C. E. (1998). Social and cultural perspectives on blindness: Barriers to community integration. Springfield, Ill: Charles C. Thomas.

Republished with permission.

Kaizen Program
for New English Learners with Visual Limitations
email: kaizen ( at ) quixotes.org
web: https://www.quixotes.org/kaizen//