Finding out that your child is blind, partially blind, or has low vision can be a scary experience. Some disorders will be discovered at birth, if the vision impairment has observable characteristics such as cataracts or congenital glaucoma, but many go undetected until the child doesn't meet certain visual milestones. Parents may start to notice that their child does not seem to make eye contact or track bright high contrast items.
Children with profound vision loss will often have nystagmus. Nystagmus is an observable condition where the eyes tend to shift back and forth rapidly, giving the appearance of jiggling eyes. There are a few children that are born with normal vision and develop vision loss due to accidents, brain tumors, or severe illnesses. Generally if your child is not meeting typical vision milestones by around three or four months your pediatrician will refer your child to an ophthalmologist. Proper diagnosis cannot be made without a thorough exam from an ophthalmologist.
Visual Acuity may not be determined until your child is older. When doing an exam on an infant, ophthalmologists often use visual acuity cards. Basically these are large posters of black and white lines. Infants see high contrast, black and white items the best. The cards will start off with very thick black lines and each card will have gradually thinner black lines. The thicker the line, the easier it is for an infant to see. By observing how your infant tracks these cards, your ophthalmologist can determine more about your infant's visual acuity.
Dealing with the shock
There is no easy way to deal with finding out your child is blind or has a significant vision issue. Usually the diagnosis comes as a shock. Even if you are aware that there is a problem, actually hearing the words that your child may be blind or partially blind is emotionally crushing. Talking to others parents going through the same thing will help some. Educating yourself on the subject matter will also help. Not knowing what to expect is one of the most difficult aspects of having a vision impaired child. With most conditions your ophthalmologist can't give you a perfect idea of how well your child will be able to see in the future. Once your child starts being able to communicate well, you will have a better idea of the severity of your child's condition.
Coping with family members and friends
Not only do parents have to deal with their own emotions but also they have to handle the reaction of their family and friends. Sometimes family members can say things to make the situation worse, questioning your prenatal care, dismissing the problem as not as severe as you are telling them, or giving you unwanted advice. You may hear things like "well you can just get him glasses", or "you know they have surgeries for that". Even as you try to educate them on the subject, often times they have their own beliefs. Sometimes it is best to keep the discussions to a minimum if they are not supportive or helpful to you.
What to do next
Once you receive your diagnosis, you may be wondering what you can do. Talk to your pediatrician about getting services with a vision therapist. This is often available through Early Intervention programs. Ask your pediatrician whom to contact for more information on this. Read as much as you can on the subject. Knowledge about your child's vision condition will make you feel less helpless. Find a support group. If you can't find one locally, you can find one online. There are many support groups available for specific vision disorders.
Justmommies recommends"The Eye Patch Kids" DVD
by Bjort & Company, Inc.
The National Organization for Albinism and Hypopigmentation
Nystagmus - American Nystagmus Network
Optic Nerve Hypoplasia/ Septo Optic Dysplasia - Focus Families
Retinopathy of Prematurely
The Association for Retinopathy of
Prematurity and Related Diseases
Blindness and low vision
National Association for Parents of Children with Visual Impairments
Please visit Justmommies forum for Vision Impaired Children for support from other moms with vision impaired children.