ISO advice for how to talk with son about his not-so-noticeable disability

[Anonymous]

My son is almost three and has a visual disability. We're unsure at this point what the actual effects will be, but he does have relatively noticeable nystagmus and likely will have reduced vision (will need to sit at the front of class, won't be able to drive, etc.). I've noticed myself mentioning it to others lately - I think I have a need for people to know for some reason. Maybe because of the eye shaking being noticeable, maybe because I just want to reach and talk about it. As he is now getting verbal and more aware of himself and others, I'm worried about mentioning it in front of him and starting to think about how we will "manage" the topic. Will he be embarrassed if it comes up? When will he become aware that something is "different" about him and how should I handle those conversations? How frequently is this something we will talk about or is it just a part of him that we should just let "be" and not focus on?

I'm starting to think about the future and what this means for him mostly from a social and self-esteem perspective and I am really struggling with coming up with a plan. I'd love to hear how others talk to their children and to other people in their lives about a not-so-noticeable disability. Thanks for any input and/or suggestions for reading I can do on this topic.

[Anonymous]

I don't have any profound advice about how to talk to and in front of your son about his issues but I think the fact that you are thinking about this issue so carefully will help you come to the right answer for your family at any given time (and I do think this is something that will change as your son grows). I wanted to write with a positive story for you because my DH has issues very similar to your son's. He has severely diminished vision as a result of an inherited retinal problem so that, although he can read and "see" he is legally blind and cannot drive. Despite his vision problems, he is happy, professionally very successful and a great dad. In the big picture it is mostly an annoyance and something that he has learned coping skills to handle very well.

Like your son, he can see enough that he can function without people noticing that he is disabled in that way, but often has issues that are affected by that lack of vision. For example, he has a horrible time with recognizing people because he simply cannot see them very well until they are right up near him. So someone waving as they pass on the street or across a room at a cocktail party is completely missed by him or he doesn't know who it is and then is embarassed that people may think he is ignoring them. For a long time when I first knew him he was very reluctant to share this information with people until he finally came to realize that it is important for people to know so that they understand situations like that or know that he can't drive when plans are being made. My personal view is that it is important that you let key people in your life know about this issue so that they can understand how your son is coping and not ask him to do things that he simply cannot do. Other than that, however, I would try not to talk about it in front of him very much and understand that there may be times when he really does not want to discuss it at all.

[Anonymous]

Thanks 10:26 - that's really nice to hear. I think that's the balance I'm trying to find - between having him and everyone be aware of his challenges, but not giving him excuses, because really, he's just a normal kid.