One thing that I often see is kids getting a free pass on things like chores and life skills because they can't see. This doesn't do them any favours in the future, I literally work with teenages who can't tie their shoelaces or can't make themselves a snack. Have expectations they will learn like any other kid, even though it may take more time and they may need to put in more effort. Take time to let them try, and fail, and try again until they succeed. Sometimes that involves some preperation beforehand (for example, if they take a long time to find their shoes and tie their shoelaces... locate the shoes the night before, and put them in the proper spot so they don't need to search).

There seems to be a few different types of Stickler's syndrome, but another common theme I see is hearing loss. You should check with your local deaf-blind agency (if you have one that specializes in that) to discuss whether tactile sign language is a good option. For some types of hearing loss, hearing aids would be sufficient.

When your daughter starts school, make sure to check with each teacher to update them on her condition and what adapations are best to help her. If she has an assistant at the school to help, that would be very useful as well. Not all teachers understand what is and isn't useful. As she gets older, make sure to teach her how to self-advocate, and make request for the accomodations she needs.

Hello there! I went legally blind at 15. I also work with blind children from tine to time. Here are some bits of advice-

1. Monitor her vision as it changes and make sure to keep in contact with her school district. Do you live in the US? If so, she's entitled to an indivisualized education plan (an IEP). This will ensure that when her vision changes, schooling will remain accessible. Keep an open mind as far as accessibility goes. When she's older, have her try out different learning tools such as braille, large print, tactile paper, traditional magnifiers, and digital magnifiers

2. Look into getting her orientation and mobility training. O&M can include safely crossing streets, navigating stores and buildings, and cane usage. Independance is important, and safe travel is a big part of that! Even if she becomes a "high partial," (meaning that she would still have a significant portion of her vision left) encourage her to try to use a cane. Btw, if you want to make cane-usage more fun (once she gets to that point), maybe encourage her to personalize it. Ambutech sells colorful canes (i have one with a oink handle)

3. Introduce her to the idea of visual impairment at an early age. You don't have to tell her what is going to happen to her right away. It would be helpful if she knew that some people have to do things differently because they see things differently, and that that's okay! Before i knew that i was going to lose my vision, i just assumed that blindness was this awful scary thing. I wish i could've told younger me that it's just a different way of living. When she starts to understand that her vision is going to change, treat it as a change rather than a tragedy. Also, introduce assistive devices (like canes) to her in a positive way, by focusing on the fact that they help people.

3. When she's older, teach her communication and self advocacy. Even as a teen, i used to get so frustrated when people didn't understand what i could see and what i needed help with. I can only imagine that the experience would be far worse for a small child. Help her learn how and when to ask for help

4. Good organizational habits around the house will help her out a lot!

5. Perhaps look into local youth organizations for the blind. I joined one after i started losing my vision, and that helped normalize my whole situation. Plus, you'll probably feel more at ease when you come across other parents of blind children.

6. Keep teaching her to dream big! As someone with a visual impairment, i can honestly say that i lead a happy and fulfilling life. I'm currently going to college and i'm working at a job that i love. When your daughter goes blind, she still will be able to live a wonderful, independant life.

Hope this helps! Btw, you seem like a good parent since you're already looking toward the future

Thank you so much everyone for your replies :) honestly it's been hard reading them - a reminder of things she may not be able to do one day,

Her gross motor skills are a bit behind but we're working on it. I'll definitely try and get her on a bike and throwing catch more often (once she's masters it!).

Great point about looking into disability services now. We haven't enrolled her in a school yet (she won't start till 2019). But I'll try and find one that caters well for kids with additional needs.

You're right about hearing loss. My mum wears hearing aids and I'll probably need them myself down the track. I will see if there are any deaf blind organisations around that might be able to assist with a tactile sign language query.

Travel - I think my hubby would be very happy to hear that one! Don't need any encouragement in that department, just finances lol

I love the reminder not to give kids a free pass. I'm of the exact same school of thought but can imagine once you're in the thick of it, it would be very easy to do.

Blindjo, wow a lot of very useful advice there. I'm going to have to read it a few times I think. There are so many things to consider that I never knew about - going to be a lot more research now lol!

Really appreciate you all taking the time to reply. I'm a total noob to reddit so apologies if I haven't got the knack of correct etiquette.

My SO lost her sight around 19. She's legally blind with only a spot of peripherals in one eye. She says she wished she traveled more. Yes, you can still visit sights when you have already lost your sight, but she wishes she could see it all.

She also says to appreciate your independence. Do stuff with your friends and by yourself while you have the chance. Just tossing a ball from one person to another is something that's missed.

My daughter is 2 and is already legally blind. Her vision is around 20/470 even with corrective glasses, but her vision will likely deteriorate further by the time she is an adult.

You've gotten a lot of great advice already. Assuming you are in the US, certainly contact your school district since she most likely qualifies for services even if she is not kindergarten age, my daughter has been getting services since her diagnosis at 6 months old.

If you are interested is learning braille and other parenting classes you can take free online courses through $1. $1.

I'm happy to answer any questions you may have. I've been there myself feeling overwhelmed, just realize that she will be able to do everything she wants, only in a different way.

first one of my fondest memories was of riding my bike down the street and being able to just free wheel
Second,, advise" make sure that you are signed up with disability services in your area they can help you and your daughter better prepare for things to come