Rods are also responsible for peripheral vision and cones are responsible for sharp central vision. Depending on the type of cone-rod dystrophy he has, one or the other might go first. He might experience vision loss, but his visual acuity might remain the same. The low vision doctor will know to check for all of this stuff. I would try your hardest to go to one. Also, it's important to note your son's condition is degenerative, but we can't predict when or if he will lose more vision. Factor that into your decision making. While braille is important to learn, especially for children who cannot read print, he may spend multiple hours a day learning this code and missing other things in class only to find out that he keeps good functional vision for all of his educational career. When you make decisions for his education as a youth with a visual impairment, constantly be thinking about the adult you want him to become. Picture big dreams for the adult version of your son. He can achieve if you expect him to achieve and setting high standards now is very important in that process. You will be his greatest advocate for helping to push him to succeed or for making excuses for why he will always fail. Pick the first option. Make choices based on the first option.

Thanks. It's the rods that are going first. He's got very poor night vision and needs to be guided, but has pretty good daytime vision.

I think having a cane at night would be really helpful as he's scared of going outside when it's dark. We're UK based and no idea how the system works here.

Wow volleyball and golf! Well that's really inspiring 🙂

The local council sent a vision specialist in to the school to see him. She wants to get him touch typing lessons while he can see. And is going to get someone from the mobility team in to see him about getting him some aids for low light conditions.

His school haven't moved him to the front of class yet, despite saying they would last week....so I'll be in tomorrow morning to make sure that happens. (We had a bank holiday on Monday so today was the first day back in)

Thank you. I'm just off to read your other post. I've been referred to the eye hospital too because of the concern that it may be genetic (my night vision isn't great).

Whether he has retinitis pigmentosa or not, some kind of cure for that , or a way to mitigate it would be wonderful.

Thank you for sharing. It's really great to hear how positive you are and it gives me a lot of hope about how things are going to be for Bobjr. We don't know what type he has yet. Or how bad it is etc.

So glad to hear that RPG is accessible....I'd hoped it is. He has also started GMing very short scenarios and would like to GM more as he gets older. We don't always use actual miniatures, often just use the "theatre of the mind", which I think works better.

Thank you that's really helpful. I'll look those up!

Thanks. Should have said that we're UK based. We've got a referral to the eye hospital but that'll take a while. He had an ERG at the local hospital which is when they diagnosed him. I think it's the not knowing that's hardest right now.

Hi, we're in the UK. He's just got a diagnosis/referral letter from the local hospital to the eye hospital.

Thanks that's helpful. I hadn't thought of Facebook groups. And I didn't know there were local ones. Part of me is mentally holding back until we know exactly what he's facing....maybe I'm just sticking my head in the sand for a bit though, too?

Thanks. I've got no idea where to get help for us as a family, so that's really helpful. We're UK based, I don't know if that makes a difference?