It will be hard when his friends get their driver’s license and he can’t. Orientation and Mobility Training is a must! Life skills is a must. But most importantly let him be a teenager. Let him have fun with his friends. If he breaks curfew or doesn’t do his chores let him suffer the consequences like other kids. Let him be normal! Someday his parent’s won’t be there so he needs to learn to stand on his own two feet. As a parent, your natural instinct is to protect your children. Let him live his own life.

Hey there! I was 15 when I was diagnosed, I am now 22 and the amount of vision I have lost has been very little. While everyone’s experience is different I think it is worth noting that it can also take a long time before your son sees any substantial difference in his sight. I personally didn’t want to learn how to drive when I was younger (I still don’t) but everyone copes differently. Be as supportive as you can be and also understand that being diagnosed with this shouldn’t stop him from having a normal life. I think talking about it helps and also taking things as they happen. Don’t get ahead of yourselves and take things step by step. I don’t think there’s anything anyone can say to be ready emotionally for any of this but i do think having a supportive system of good friends and family will take him a long way. I wish you guys the best and hopefully it’ll be a really long time before his vision deteriorates!

Music is a great field to go into! I know Berklee College of Music in Boston has a bunch of blind students.

I don’t know if you can really be prepared for it. Therapy. Getting to know other blind kids.

Everyone goes through grief differently but everyone will go through it. It helps to have a grief counselor to help move you through it and understand the steps and that it is normal. Everyone’s vision loss progress differently. My low vision instructor is in her mid fifties and is still teaching using the same techniques that she taught me. I have a juvenile form MD that by what the doctors said, I would be legally blind before being a teenager. I was 58 before I was legally blind. My point is, use this information to educate yourself how to remain independent know matter what happens. Only he gets to choose if he is going to be a disabled sighted person or an amazing blind person. Start by Googling Amazing blind people. Keeping a positive attitude makes for a enjoyable journey. Peace.

Get him signed up for services right away. He will need orientation and mobility, and will need to learn to use adaptive tech. He will likely fight it as part of his grief/denial, but it’s 1000% necessary. If possible, try to get someone he meshes well with. Get him involved in the blind/VI community. Maybe get him signed up for a goalball team, or another adaptive sport. Get him a therapist. Educate yourself as much as possible, so you can continue to be the best parent/support person you can be. Yes you will feel emotional and overwhelmed at times, and that’s totally okay. That’s why you both need support systems. If you’re in the US, and you haven’t already, get him signed up for services through school. I’m not BVI myself but work in the community. If you ever need anything, don’t hesitate to reach out. I’ll help how I can, but am also willing just to be a listening ear. Also, just remember, this is not a death sentence. Your son can still live a rich, fulfilling life. He might just have a rough few years as he adapts. That’s totally normal and to be expected. You’re not a bad parent if you feel sad at times, say/do something wrong, or when you just feel overwhelmed and possibly helpless. It’s hard when our loved ones our going through a tough time. Especially when they’re our kids. You are going to say and do wrong things, but your son needs to know you’re still trying to set him up for the best life he can live. He may be angry for a while. He may become depressed. It’s important he see a therapist. Grief counseling, trauma therapist, anything like that. You may need to as well depending on how you’re doing. But this is not the end of the world! And the sooner he accepts help and the many services available to help him, the better set up he will be in the future.

My son is in a few Blind youth programs. For all of them, there are teens/ young adults with varying levels of vision. As another poster said, grief and anger are part of the process. Finding other VI peers had meant the world to my son.

I was diagnosed last year. From my perspective Ive lost a lot of usable visual field. (Pericentral RP) Basically rather than starting in my far peripheral, it starts about 80 degrees out and goes inward from there to about 15 degrees. A ring of blindness if you will. I was 24, in paramedic school, half way through the program. I found out I had RP on accident as I went to the ophthalmologist for a different reason. Since then I have lost quite a bit of practical vision. I had to drop out of paramedic school, i will likely stop driving come August and I need a cane to walk around because I cant see the ground well if at all. You could say my life was in shambles. But Ill tell you what, also since then, Ive gotten married, got hired as a ophthalmology technician/surgery technician and have helped countless visually impaired people and people who had emergency eye problems they werent even aware of. My recommendation is to tell your son, just accept the hand your dealt and get ready to uno reverse it! Honeslty the only thing that kept me going and is still keeping me going is the fact I know I have a purpose now because of my impairment.

Not sure how much advice I can give as I’m still figuring things out myself, but maybe I can give you a little hope about what is to come. I was diagnosed with RP back when I was 12. I’m now 23 and I still have enough vision to get around reasonably well. The good news is that he has time, and he won’t lose his vision overnight. However, there will be challenges. Driving and night/low light activities will probably be the biggest difficulties. That said, he’ll still have a totally normal life! He just has to account for his vision. Both my sister and I have RP, but we both made it through college and are working/living normally. My sister even drives! Just be honest with him, and treat him just like any other teenager!

Braille. Everyone is saying Onm. But braille is important too. He will learn it faster as a kid than as an adult.