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
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.
Helpful
links:
Albinism- NOAH
The National Organization for Albinism and Hypopigmentation
http://www.albinism.org
Nystagmus - American Nystagmus Network
http://www.nystagmus.org
Optic Nerve Hypoplasia/ Septo Optic Dysplasia - Focus Families
http://www.focusfamiles.org
Retinopathy of Prematurely
The Association for Retinopathy of
Prematurity and Related Diseases
http://www.ropard.org
Strabismus
http://www.strabismus.org
Blindness and low vision
http://www.blindness.org
National Association for Parents of Children with Visual Impairments
http://www.spedex.com/napvi/
Please visit Justmommies forum
for Vision Impaired Children for support from other moms
with vision
impaired children.
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