My son was diagnosed over 10 years ago. We chose to tell him immediately, and he became an advocate for himself and visual impairment in general. Our community of friends, family and schools have been amazing. It also opens up better support. That may not be the right decision for you and your family, but it worked well for our personal circumstances. Conversely, we've attended support networks where parents have hidden their child's diagnosis, who then become teenagers that can't understand why they struggle with certain tasks.

To end on an optimistic note, there's never been a better moment in history for therapy. I recommend looking into genetic testing and getting registered with organizations like The Foundation Fighting Blindness. There are curative therapies on the horizon, and the pace of development is astonishing (especially with retinal disease).

Happy to answer more questions - just PM me.

The switch to the new normal is a difficult time for all involved. I got dx with RP in my 20s but I knew something had been wrong for years. I’m sure he has some sense. Not sure anyone can advise you on when to tell him, you know him best.

There are many skills it would be good to start learning early. Technology has come a long way and visually impaired and blind people are not near as isolated as before. Learning how to use a cane (Orientation and mobility) and screen readers will eventually be very important. Every RP cases progresses differently and he might keep useful vision for a long time. Good luck

Granted I’ve had roughly the same amount of (non) vision since birth, so it’s a different circumstance, but in my opinion, hiding the diagnosis from him won’t do your son any favours. Maybe give it a few days, after you’ve had more time to process, so that you can explain it in a calm manner (as he’ll react to your reaction as much as anything), but he may already know something is up, based on how you were acting as you left the eye doctor’s.

In a way, knowing about this early is better. He can start learning now how to do things both with, and without vision, which should help make the transition easier as he eventually loses more sight. And you mentioned your wife is blind, I think? So there’s already someone in his life modeling how to do things the blind way, and being a successful blind role model.

Obviously it’s terrible news, and it’s going to take a lot of adjustments for you and your child. But while not perfect, the world is more accessible than its ever been, and they are working on new treatments and therapies for RP, which may eventually help your son retain some of his vision. Even if not, I know several people personally who have RP and are living their best lives, so there’s every reason to think your child will do the same.

I have RP as well as 2 of my brothers. I am 38 and my brothers are both older. RP can have a wide spectrum of effects. For example my 57 year old brother with RP does not use a cane, can still read books and his phone. Sadly my other brother is totally blind and he uses a cane and is 50. Personally my RP has progressed slowly. I drove in high school, played sports, and while I still have a license I don't drive anymore but can run, walk, bike, or take public transit without assistance. I have trouble at night or in the dark, no peripheral vision, but I can deal with that. Start giving your son Vitamin A supplements if Dr says it is ok (I take 10,000 IUs a day), also sunglasses with uv protection will help. It is not the end of the world or all doom and gloom. I honestly don't remember being told I had eye issues by my parents. I never really disclosed the condition to people in high school or college just used my coping tricks or played it off when it was obvious. Toughest part about RP is you see well enough to function normally but you still have issues so people don't get it. I'll just say again RP affects everyone differently and the tech aides and accomodations are growing every year. There is also a lot of research with stem cells and gene therapy if you want to look in to signing up for a study. Feel free to ask if you have any questions.

While I don’t have RP, I am legally blind and have been for as long as I can remember. I had to discover this on my own when I was a teenager because my parents didn’t want to tell me. Perhaps you might want to wait a bit for yourselves to decompress and find the right way to tell him, but I would not wait too long. There is nothing worse than knowing you have been living a lie and the closest people to you knew for years.
It’s hard to know that you’re different from other people around you, but it sounds like he has a great support system there for him already. I wish you the best of luck in your future :)

> Do we tell the kid??? He is tooo young and sensitive!

When you are going to tell him then? $1 To be fair, your son isn't legally blind yet so this is like comparing apples and oragnes, but maybe Caroline's TED talk might give you some new perspective to the matter.

As a someone who received my own RP diagnosis when my field of vision had already went under 10° in both eyes, I would rather wanted to know *before* my eyesight had started to detoriate.

In my mind it would be easier for your kid if he first learns what future might bring to him, so that he could be more vigilant for the possible new developments, compared to the opposite where he learns about the diagnosis after his vision has already taken a nose dive... *if* he even realises what is happening!

Also, in my opinion kids are much more resilient than adults give them credit for. In fact, I believe I was emotionally more resilent as a kid than now as a 30 something: as a child it was easier (at least for me) to just accept hard news and move on as if that's just how world is supposed to work, compared to being an adult who "knows" how the world actually works.

But that's just my opinion: you are his parent and you know his character better than I do. It's your task to decide when and how you tell him.

> What about the future?? I know there is no solution as of right now.. but what can we do to make it easier for him. Teach him skills? What skills and how??

Since his RP hasn't kicked the gears yet (right?), it might be good idea to first educate *yourself* about what does it mean to be a parent for a blind child or teenager. Those guides should cover what things you should be teaching him and for what he might need professional help (namely orientation and mobility or OM for short). Google is your friend.

> He loves reading, watching history documentaries and gaming!

First one can be covered by audiobooks adn history documentaries are usually narrated, so no reason to panic here. Gaming might be difficult one, but depending on how his RP is developing this might be a non-issue even in a long term.

I'm not a parent but I think saying something as early as possible is a good idea. Maybe you should show him Avatar the Last Air Bender which features a blind main character, seeing that might make it a little less scary for him.

I don’t have RP, but glaucoma. My great grandmother was blind from it and I visited her often as a child so I knew what blindness was all about and that independence was totally possible. I was told I was a glaucoma suspect in my late teens. I grieved then while my vision was totally normal and could do all the research I needed. As a result, last year when I noticed my blind spot, I knew exactly what it was and what was happening to me. I knew what my treatment would likely be and what I would need to do differently as my eyesight went downhill. It made adjustment so much easier. Tell him early that he’s like mom. Don’t let him be blindsided. If his sight begins to deteriorate rapidly, he will likely be better able to cope by spreading his grief out over time and watching mom more carefully and adopting those behaviors before he really needs them. Now I’m making an assumption that your wife is a fully adjusted, independent blind person. If that’s not the case, get them both into the wider blind community to learn those skills so she can be a good role model.

What state do you live in? New York State has a Commission for the Blind that helps people who are legally blind, but I'm it can make recommendations. Does your state have something similar? Organizations like Lighthouse Guild offer many services and have tele-support groups. Your doctor should have suggestions too.

You have to start preparing him now. There are many assistive technologies and I assume it's easier to learn to use them when one is young. This is terrible news, but the worst is when someone has had sight and suddenly in middle-age loses their vision. They have to find another way of making living and there are so many adjustments.

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