Living with RP in Childhood

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If you are a parent of a child with RP, it is important that you talk with
your child about the condition. It is natural for parents to protect a child
from knowing about the disease, but most often the child is aware of it
and needs parental guidance. Children may be scared by having many
16 medical appointments and may be unsure of what to expect in the
future. Your child should be encouraged to talk with you if he or she
has any changes in vision or needs additional help at home or school.
Parents struggle to find a balance between allowing the child to
explore his or her surroundings, and stepping in to help when needed.
Remember, your child is an individual who happens to have vision
loss. Your child can have a normal childhood and grow up to be
independent and successful, like any other child. As a parent, your
attitude will dramatically impact your child’s views of living with RP and
expectations for the future. It’s important to maintain a sense of hope
with your child, and to never give up. Open communication between
parent and child will help.

While a positive attitude is crucial, it is also important to be realistic
about the struggles for children and families dealing with low vision.
Some parents find counseling for themselves, their child, or their entire
family to be helpful. It can help the family maintain a sense of normalcy
as they learn to adapt to the child’s needs. It’s also a good idea to
introduce your child to several different peer groups besides the one
at school. An extra set of peers in the community may help your child
overcome difficulties with peers at school.