RESOURCES FOR PARENTS OF BLIND CHILDREN

Sarah J. Blake

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About Sarah

Sarah Blake has lived with blindness/visual impairment due to premature birth since childhood. She has had several surgeries to treat complications such as detached retina, cataracts, glaucoma, and cornea damage which threatened her small amount of vision at various points in her life. She learned both braille and print as a young child. She travels with a dog guide.

Sarah graduated from Anderson University School of theology in 2009 with a Master of Divinity. She is a licensed minister with the Church of God (Anderson, IN) and travels as a guest speaker and singer to churches, colleges, and other community groups. She also works with companies to increase features of software to enable blind students to access foreign language materials.

Sarah serves on the health care issues committee affiliated with the American Council of the Blind, which promotes access to health information and equipment. She also serves as co-moderator for several online discussion groups, including BVI-Parents, a group for parents of blind and visually impaired children.

609,000 children in the United States live with some degree of visual impairment. Of these, over 95,000 are unable to read newspaper print, and over 50,000 are legally blind, meaning that their visual acuity with corrective lenses is less than 20/200 in their better eye or that their visual field spans less than 20 degrees. 1.5 million children in the world are legally blind.

Parents of many of these children are finding the support and resources they need using the Internet. A number of email groups provide opportunities to interact with other parents and blind adults. Web sites provide free information and links to books that can be purchased online.

If you are just beginning your search for information in response to a recent diagnosis, the first thing you should know is that your child can lead a very fulfilling life with or without eyesight. Your support will provide all the encouragement your child needs; and when you understand blindness and how people do things without eyesight, you can pass this knowledge on and help make that fulfilling life a reality. This site will help you find the best resources for yourself and your child. Please do come in and explore.

Understanding the Eye and Visual Impairment

If your child has recently been diagnosed with a visual impairment, you may have many questions about whether treatment can help, how to help your child use his remaining vision, and what to do next. The Eye Care Page provides basic information about the eye, eye conditions, treatments, and low vision aids that can help your child use his vision most effectively.

Blindness and Early Childhood

Blindness can affect child development in a number of ways. The most important thing to remember is to get your baby interacting with the environment! Sighted babies move around because they become curious about what they see. Blind children may need a bit of help getting their curiosity piqued. Talk to your baby using normal language. Play with toys that feature different textures, sounds, and smells.

Getting your baby to move around in the environment helps him develop an accurate understanding of spatial concepts and learn to move around safely. In the article, "Orientation and Mobility: What does it mean for my baby?," Andrea Story introduces parents to the field of orientation and mobility, its history, and what O&M instructors do with babies and toddlers.

Several books also provide valuable information for parents of blind children. In Children with Visual Impairments: A Parents' Guide, Cay Holbrook and other parents and professionals discuss issues of concern to parents of children of all ages. Patricia Maloney, who is the mother of a blind child, shares her experiences in her book, Practical guidance for parents of the visually handicapped.

Meeting Your Child's Educational Needs

Educational services are available for children with visual impairments from infancy through age 22. For an overview of services available, read the article, "Who's Who in the Education of Blind Children." If you are a homeschooler or want to supplement your child's formal education at home, the electronic resource book, Nothing But the Best, provides information about teaching blindness-related skills and academic subjects as well as links to sources of supplies and other useful books.

Email Discussion Groups

A number of email discussion groups are available for parents of children with visual impairments.

BVI-Parents is a place where parents, professionals and others can discuss issues relating to raising and educating children who are blind or visually impaired. Recent topics have included canes for children with low vision, feeding skills, teaching Braille to children with low vision, and suggestions for fun play activities. To subscribe to the list, send any message to bvi-parents-subscribe@yahoogroups.com.

Blindhomeschooler is an email-based forum for discussion of issues related to homeschooling children who are blind. Topics of discussion have included teaching Braille, special education services for homeschoolers, curricula in accessible format, suggestions for activities, and socialization. Blindhomeschooler is a low volume list, generating less than 10 messages a day. Mail can be read individually, as a digest, or via the Web only. To subscribe, send any mail to blindhomeschooler-subscribe@yahoogroups.com. To access the list archives, you will need a Yahoo! ID and password linked to your email address. If you already have one, visit the Blindhomeschooler web page. If you do not have an ID and password, follow the sign up link for more information.

blind-family is a list for the discussion of all aspects of family life with someone who is blind. Members include parents, spouses, siblings, and adult children of parents who are blind. To subscribe, send any message to blind-family-subscribe@yahoogroups.com.

ReedMartinSPEDlaw is a forum for discussion of special education laws and advocacy techniques. To subscribe, send any message to ReedMartinSPEDlaw-subscribe@yahoogroups.com.

BlindKid-Software is a list to promote discussion of educational software for blind children as well as non-violant computer games playable by blind children. To subscribe, send any message to blindkid-software-subscribe@yahoogroups.com.

APHAKIC (Association of Parents Having A Kid In Contacts) is designed to provide support for parents and health care professionals caring for young children who have had cataracts. To subscribe, send any message to aphakic-subscribe@yahoogroups.com.

ROP-support is a forum for discussion of retinopathy of prematurity and related issues. Participants include parents of children with ROP, teachers and caregivers, and adults with ROP. Topics of discussion have included diagnosis, treatment, glasses for infants and toddlers, educational issues, participation in sports, and coping with public attitudes. To subscribe, send any message to rop-support-subscribe@yahoogroups.com.

Lca is an email-based forum for people with Leber's congenital amaurosis and their families. Participants include parents of children with LCA, teachers and caregivers, and adults with LCA. Topics of discussion have included diagnosis, differentiation between LCA and other degenerative retinal conditions, educational issues, research about LCA and treatment options, and perspectives regarding the restoration of vision. To subscribe, send any message to lca-subscribe@yahoogroups.com.

LazyEye is a list for parents of children with amblyopia and strabismus. To subscribe, send any message to LazyEye-subscribe@yahoogroups.com.

oma is a list for anyone coping with ocular motor apraxia, a condition characterized by difficulty in controlling horizontal eye movements. To subscribe, send any message to oma-subscribe@yahoogroups.com.

Coloboma is a list for anyone living with coloboma, a condition resulting in abnormally shaped pupils and damage to other eye structures. To subscribe, send any message to coloboma-subscribe@yahoogroups.com.

stargardtsdisease is an email list for people with Stargardt's disease and their families. Stargardt's disease is a degenerative retinal condition. To subscribe, send any message to stargardtsdisease-subscribe@yahoogroups.com.

yup_parents is a support group for parents of children with glaucoma. It is sponsored by the Glaucoma Foundation. To subscribe, send mail to yup_parents-subscribe@yahoogroups.com.

PGCFA-Support is a support group for parents of children with glaucoma and cataracts. To subscribe, send any message to PGCFA-Support-subscribe@yahoogroups.com.

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