There are lots of supports for you and your child link up with as many as possible. Look after yourself and it's OK to have all the feelings, questions and concerns that you do and will have. There are also lots of support groups of different types so you will find what suits you, some offer info, some do fun days, some offer peer to peer advice. It will be OK. Xxx good luck

I have it. I can see light only. I personally don't have any other problems, but everyone is different. I'll help you as much as I can.

Hi
I’m Erica. I’m 36 and have Septo Optic Dysplasia.
From the short amount of reading I did just now, its kind of a spectrum: ONH is mostly the underdevelopment of the optic nerves, where as SOD affects some parts of the brain as well as the optic nerves. It’s different for each person. I am totally blind except for light perception, have full cognitive functions, but have to replace all my hormones.
There is a lot more I could tell you, but I really haven’t got it in me to reel off all my problems and I don’t think it would help you to read such either. So the top things I’d tell you are:
**be your kid’s biggest advocate**. Push him, teach him, guide him; and don’t let anyone stand in his way - whether that’s educationally or in healthcare settings. In time, **you will be the experts** - not your doctors. Don’t accept one answer and go on your way. If you think something is worrying you, keep pushing until you get answers.
Take advantage of any support you can get your hands on - whether it be Facebook groups - of which there a at least a few to choose from, or professionals who can help with developmental delays etc.
This website is a good place to start
https://www.magicfoundation.org/Growth-Disorders/Septo-Optic-Dysplasia/ .

I’m not a medic of any kind, but you do tend to pick up bits of helpful information along the way. Note that I know more about the SOD end of that spectrum I mentioned, so just take what nuggets of info here that suit your situation.

For now, enjoy him!!

I dont know much about ONH, but I do know from my know experience as a visual impaired person some tips that might help. First off, please be honest with your son about his condition. On of my really strong early memories is asking my uncle, who raised me, if it was normal to not be able to see, and he told me yes, and I believed him till I started preschool and it hit me, the other kids could run around with out tripping or bumping into things, they could grab stuff with out feeling for it, they could tell about stuff across the room, ect. That hit me pretty hard. I something about me was broken and the adults in my life lied to me about it. I felt a bit better about it many years later after having a more casual convo with one of my docs, who she herself is also visually impaired, and went through a similar incident early in her life. Knowing others had experienced something similar helped me feel better about myself. Now, another thing, don't coddle him! Start early teaching him to live with his impairment and help him learn to be independent. I know its hard, but he'll be so much better off if you support him and push him to be the best he can, no matter what his issues might be, he can do anything any normal kid can, he just needs to find his own way how. As his parent you can help that happen. My uncle pushing me helped me a lot. Anything I wanted to do, he did his best to help me do it and I'm really thankful for having him in my life, even if it was a bit rocky really on. I was the first kid he ever had to deal with and I came with a lotta issues, so I dont blame him for telling a blind 3 year old she was normal, he probably didn't really know how else to answer me at the time. He did his best like any parent should and like you will too, so dont worry, your best is all anybody can ask for and I'm sure your son will be thankful for it. Your on here doing research to help him already after all.

I have it, I am completely blind, but do not have any developmental defects that I am aware of other than that. I work as a lawyer. It can be done.

I’ve worked with a few students who had ONH. The most common trend among them was the need for hormone shots. Some were non-verbal, some could speak fluently. But they were all, without a doubt, a pleasure to work with.

I can’t possibly imagine what you’re going through right now. But I’d like to reassure you that there are resources out there that can definitely help you better understand your son’s condition, and how to help you guys adapt to his visual impairment.

hi! i have bilateral onh and i have pretty good vision in my right eye (left eye is completely blind) and i wasn't diagnosed until i was 4 years old. when i got diagnosed, the doctor said i wouldn't be able to play any sports or drive a car or continue at the private school i was enrolled in. of course my parents were panicked and googling and calling endocrinologists but i obviously didnt care because i was only 4! all i cared about was the fact that he said i would have to quit gymnastics.
boyyy let me tell you that man was so wrong. i went on to be a gymnast for another 11 years, making it to level 10 as a nationally ranked athlete. i got my driver's license at 16 just like everyone else. i graduated high school from the private school he said i wouldn't make it through. im now a pre med biological sciences major in college. if there was one thing i was not okay with, it was being told that i couldn't do something that i loved just because i was a little different.
that being said, i went to the endocrinologist while i was growing up and everytime i went in he said i was perfectly normal. i went every years until he told me i didnt have to come back. now that im older ive started recognizing some pituitary dysfunction symptoms. im actually going back to the endocrinologist next week for a hormone panel. i also have pretty bad adhd but i dont think there have been enough studies done for me to say that the onh and ahdh are related (i believe they are though). anyways i guess all i was trying to say was even though it seems scary and confusing, try to remember that youre not alone. and even though doctor can be stubborn theyre alway there to help and answer questions. i texted my eye doctor at 3 am one morning (yes we text each other and yes this is the same doc that diagnosed me) because i had a rash on my face that was close to my good eye and he called me almost immediately just to explain that everything was okay.

sorry for the rambling. OH ALSO you should join some facebook groups of other moms with kiddos with onh

I also work at a blind school and have many students with ONH. They run the gambit of vision and developmental skills. Get hooked up with Help Me Grow or other agency that serves babies (if you live in the US). They will be able to set you up with the services your baby will need. Best of luck to you and your family. I absolutely love my students with ONH.