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LIVING WITH RETINAL DYSTROPHIES

 

   

GUIDE FOR PARENTS

Research tells us that one in every 3,000 children is born with RP. It is important to recognise that RP can strike in any family with no known history of it. Do not blame yourself or your partner. Many people are unknowingly carriers of RP.

This is naturally an overwhelming experience, some of the things you maybe feeling are shock, anger & frustration which is all a normal process. Thoughts are obvious of your child's future. But behind this screen is a team...and you need not be alone, we will do all we can to get the right advice and support you need.

What to tell your child - Telling a child that he or she has a degenerative eye condition will never be easy. But it is important to be positive at all times and honest. Of course a young child will not understand what is happening, so you need to keep things simple - perhaps by saying, I know your eyes don't work very well, so we might have to do some things a bit different. Do not over load a young child with information.

Some things can be more upsetting than others for your child, particularly when they are reminded in a way of how much sight they have lost, e.g. doctors visits, or when your child attempts a familiar activity and has difficulties, also fear of becoming lost or just of losing their sight.

Help your child to come to terms with the problem, and try not to panic or become over-protective. Do not let children use this problem as an excuse for not fulfilling their full potential. Just remember there is no single "right" response but it is essential to be realistic, hopeful and positive.

Give them the opportunity to become involved in sports or activities in which they can develop confidence. Confidence in their own ability can be restored as they gain skills in the use of low vision aids or technical equipment.

Continue to give responsibilities around the home, even in small amounts they will develop their self-esteem.

It is also important to discuss with the child's siblings what is happening with their brother or sister's vision loss. They may also have fears or concerns which, when addressed, could help them to support their sibling.

You may wish to obtain a referral to the Genetic Counselling Service in your state to talk the genetic side through.

Each state has many different services for the vision impaired and blind. Contact your state organization of Retina Australia for further details.

If your child is of preschool or school age it is important to contact the Education Department in your State to ensure the special teaching services for vision impaired children are made available for your child. Meetings with you and the principal to discuss ways in which your child can be helped throughout her/his schooling.

Some of the things a teacher of vision-impaired children may suggest are:

Classroom lighting needs to be very good, and good directional lighting is important for extended periods of study or close work. While the student needs bright light, he or she should be protected from glare, including dusty blackboards, whiteboards or reflective tables. The student will probably be best seated with his or her back towards the windows. Curtains may be useful to improve light conditions at different times of day.

Some people with retinitis pigmentosa will experience difficulties adjusting to different lighting conditions. E.g. moving from bright sun into dimly lit rooms. Adaptation may take between 5 and 40 minutes. Classroom procedures can be altered accordingly.

There are many other situations including contrast chalk on boards, letter sizing, overhead transparencies and other important information that will make your child feel more comfortable.

Many young people with retinitis pigmentosa may want to deny they have any difficulties, and are, in fact, able to continue participating in and out of the classroom in much the same way for many years.

However, contact with other vision impaired young people may be beneficial in addressing some of the feelings relating to loss of vision, and in developing an acceptance of their diagnosis. Also, parents may like to discuss these difficulties with other parents who are facing a similar problem.

 

 

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