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AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

Looking for Support

Hello - I'm new here. I've been searching for a forum to find parents who may have gone down this road before. My 8 year old son has lost his sight due to uveitis just in the last year. He's always been such a happy child despite other challenges he has such as hearing impairment and juvenile arthritis. Now he's beginning to lose his spirit. I'm just out of my mind with fear and worry. I'm trying my best to get him excited about all the new things he's learning (braille, cane, etc.) but it's so new to me that I'm struggling. Anyone else have a child that has lost their sight in gradeschool?

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Re: Looking for Support

I am congenitally blind due to LCA. I did not meet another blind person until I was 12 when i transfered to a school for the blind. That is not to say your son should attend such a school but rather assist him by reaching out to others who are blind. If your state has a school for the blind, see if they have an outreach program for blind children who are mainstreamed. Such opertunities can provide him peer support, appropriate daily living skills for his age, and exposure to adaptive aids that can open up a world of independence he and you may never thought possible. The most important advice I can give you is to treat him no different if he still had his vision. if he wants to ride his bike take him to a safe place where he can continue this activity. Let him explore the world around him with and without assistance. We freely use the term "blind people/person" due to its brevity, however, keep in mind that your son is a person who happens to be blind. His blindness is only a piece of him and not who he is. If you have accepted his blindness and embraced his abilities and demenstrating them through actions, your son can learn that his blindness is an annoyance and not a hinderence.

Re: Looking for Support

I also am not a parent. I have been losing my vision over the past couple of years. I have dealt with fear, frustration, anger, and a host of other emotions. I would venture a guess that your son is feeling all of these things. I am sure that you are feeling these things too. I would be happy to talk, or listen, whatever you need.
Through everything I have experienced the worst was feeling alone. Talking to others here helps me a lot. I hope it could help you too.

Re: Looking for Support

I am not a parent but if you need to talk ,I would be glad to listen. I just lost my vision a year ago and can understand the frustration. I hope you can find someone who can help. Nicci

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