A guide for parents of visually impaired children
A parent whose child is diagnosed with a visual impairment often struggles to understand the condition, its treatment and her child's prognosis.
Having resources to help a parent cope and communicating with other parents of children with the same visual impairment can be a huge help.
That was the case for Kristin Johnson, who had no idea where to turn when she learned her then-3-month-old daughter, Evey, was blind.
After a few days of dealing with a whirlwind of emotions, Johnson remembers thinking, “What do I do now?”
Her tiny town of Baraboo, Wisconsin, with a population of 12,000, didn’t have many resources.
“My daughter is the only visually impaired child in our community,” Johnson says, so she turned to the Wisconsin Center for the Blind and Visually Impaired an hour and a half away.
People at the center answered her questions, pointed her toward resources and connected her with other families with visually impaired kids.
“Reaching out to people and finding and using resources really allowed me to see how great of a life my daughter was going to have,” she says.
QUESTIONS ABOUT EYE CARE FOR YOUR VISUALLY IMPAIRED CHILD? Contact a pediatric eye doctor near you.
Types of visually impaired children
What is visual impairment? Visual impairment is vision that can’t be corrected to a “normal level” with contacts, glasses or surgery, according to the U.S. Centers for Disease Control and Prevention (CDC).
Visual impairment can involve one or more of these factors:
Visual acuity — the sharpness or clearness with which you can see.
Field of vision — the area you can see without moving your eyes to the side.
Eye alignment — how well your eyes can work together to focus on an object.
Visual impairment in children can range from mild to severe to profound. The resources a parent needs will depend on the degree of his or her child's visual impairment.
Types of children's visual impairments
More than 500,000 U.S. children are visually impaired, according to the American Foundation for the Blind. This number includes kids up to age 17 who are blind or have “serious difficulty seeing even when wearing glasses.”
More than 50 percent of children with visual impairment also have a developmental disability such as cerebral palsy or hearing loss.
Types of children's visual impairments include:
Albinism — A group of inherited conditions, albinism affects the pigment melanin and can cause light sensitivity and vision impairment.
Brain injury — Trauma to the brain can cause cerebral visual impairment or cortical visual
Cataracts — Children can be born with congenital cataracts or develop cataracts at a young age. Pediatric cataracts, if untreated, can cause lasting vision problems.
Glaucoma — Babies and young children can sometimes develop childhood glaucoma. If the condition isn’t caught or treated in time with medication and/or surgery, it may cause visual impairment.
Optic nerve problems — In optic nerve atrophy (ONA), the optic nerve is damaged. In optic nerve hypoplasia (ONH), the optic nerve isn’t fully developed. Both can cause visual impairment in children.
Prematurity — Premature birth can affect the vision development of infants. Retinopathy of prematurity (ROP) can cause scarring, retinal detachment and vision issues. And congenital nystagmus causes involuntary eye movements that affect vision.
In Evey’s case, doctors didn’t have an answer for why she was born blind, Johnson says. “They told me, ‘It just happened,’” she says.
Resources for parents of visually impaired children
As was the case for Johnson and Evey, resources can be a lifesaver for families dealing with vision challenges. Here’s a list of resources for parents of children with visual impairment, from classroom resources to services to support groups:
Resources for parents of visually impaired students
Visual impairment can have a big impact on schoolwork, and these resources for students with vision impairments can help:
List of schools for the blind — The Council of Schools and Services for the Blind offers a list of schools for the blind by state. Even if your child doesn’t enroll, the school can act as a clearinghouse to answer questions and connect you with resources and programs.
A reading program for kids — The National Federation of the Blind offers the Braille Reading Pals Club for young children. Kids who enroll get a plush toy, a braille book a year, braille worksheets and braille birthday cards. They also have a free slate and stylus program.
Books and learning products — The American Printing House for the Blind is a nonprofit organization that offers textbooks, video magnifiers, braille tools, and other educational and independent living products.
Tools for math and science learning — The National Center for Blind Youth in Science, from the National Federation of the Blind, offers resources and information to help visually impaired students learn math and science concepts. They also provide a national mentorship program and a weeklong summer engineering program.
Summer camp experiences — Many schools for the blind and state organizations offer summer camps. Guide Dogs for the Blind offers an annual summer camp in which visually impaired youths ages 14 to 17 can get hands-on guide dog instruction and explore the possibility and responsibility of having a guide dog.
Support groups for parents of visually impaired children
Consulting, comparing notes and socializing with other families can be a major help for parents who have a child with visual impairment. Here are some ways to connect:
Online support groups for parents of visually impaired children — FamilyConnect is an online multimedia community from the American Foundation for the Blind that lets parents of visually impaired children connect, share stories and support each other. The Parents of Blind & Visually Impaired Children Facebook group has more than 65,000 members. Numerous state and local parents’ groups also have a presence on Facebook.
State support groups for parents of visually impaired children — State support groups can be helpful for connecting with state and local services, meeting nearby families and monitoring state legislation. For example, there are associations in Illinois, Texas and Virginia. Want to find a support group for parents of visually impaired children in your area? A good starting point is the FamilyConnect list of support groups by state.
Conferences for parents of blind and visually impaired children — The National Organization of Parents of Blind Children, a division of the National Federation of the Blind, holds a yearly conference for parents. (The July 2020 conference will take place virtually due to the coronavirus pandemic.)
Services for visually impaired children
Connect with services — Need to find organizations that offer services for visually impaired children and other resources? The FamilyConnect.org search tool lets you search for a wide range of services by state. For example, you can search by category for: braille and reading instruction services, community outreach programs, computer training, daily living skills training, dog guide training, education services, health and medical services, student services and transportation services.
Find local resources — The National Federation of the Blind has a list of state affiliates that can link you up with local resources. The Center for Parent Information and Resources offers a state by state locator for parent centers serving parents of children with disabilities.
Sometimes having resources for parents of children with a particular visual condition and other parents to talk to can make all of the difference.
For Johnson and Evey, who is now 12 years old, resources and connections with other families have “been huge in helping my daughter to get to where she’s at,” Johnson says, adding: “And she’s in a really good place.”
THE FIRST PLACE TO TURN FOR HELP WITH YOUR CHILD'S VISION IMPAIRMENT? Call your eye doctor or find a children's vision specialist near you.
Published May 2020