I am legally blind and although I was not born this way, I have no memory of anything else. This advice isn’t really for right now, but for a few years later, but I still think it’s important to consider now. I wish I had grown up knowing how hard life would be sometimes. My parents didn’t want to hold me back so they treated me like every other kids, not really telling me the extent to my disability or even what it was. I discovered everything on my own.Didn’t even know I was registered for the commission of the blind until a few months ago, had no idea what legally blind meant until doing some research, and so on. We never talked about disability, and now it is a taboo in my household that usually ends with someone screaming at someone else about it. They meant the best, but it has caused me so much pain because I was treated like every other kid when I clearly was not. So my advice is to make sure that child knows they are different, but that being different isn’t a bad thing. Some people read text and others read braille. Blindness should be able to be part of an everyday conversation. There is no shame in not being like the other kids. As much as guardians want to shelter their children and make them fit in with everyone else, that can sometimes be damaging. Provide a safe, welcoming environment for disability, both the positives sides of it, and also the negatives. It’s very important that there remains room for both sides

I'm a teacher for the visually impaired (TVI) In my state, children 0-3 are eligible for early childhood intervention (ECI) with a TVI and an orientation and mobility specialist. She needs to reach out to her local school district and start seeking ECI services ASAP.

Most of our early conceptual and spatial learning and motivation is visual at that age which means that intervention is imperative. I'd love to help you locate some resources in your community of you're in the US. You can reply here if you're interested and I'll DM you.

Register with your state’s commission for the blind. Make sure you have vision team set up through them to help both you and your child through their development. The professionals on vision teams can provide valuable resources and techniques to teach your child so they know the skills they need to adapt accordingly.

Hi, OP. My child was born blind and we found out 3 months ago when he was 4 weeks old.

My partner and I handled this news differently, so I can empathize with your situation with your sister. We’ve been setup with an early intervention specialist from the school district who have been very helpful with training for parents and resources for the baby to develop. We’re also fairly early in our journey and are learning along the way. I think it’s helped me to take it one step at a time.

Each person has their own way of dealing with grief. When my partner is in despair over our babies future, I try to remind her that we have much to be grateful for: our baby is healthy, we have so much support from family and friends and are able to provide a loving environment for our child to thrive. Your sister is lucky to have support from her family. And her VI baby will always have their twin for company and never feel alone. How nice!

Hang in there, OP, you’re doing great to support your sister and her babies! Please DM me if you have any questions or would like to talk. All the best!

Adding to what others have said here, there are a lot of resources for children born blind! Here's one for free early-reader braille books, but lots of the organizations listed here are also great resources for other things too: https://www.pathstoliteracy.org/resources/sources-free-braille-books

I want to add too that being young and blind isn't easy, but it is much harder to go blind later in life. Kids who learn to read braille early can do anything a sighted child can do with a few accommodations, and technology is really changing accessibility. Both twins have a bright future ahead of them.

Look for the moments you can celebrate the babies just like you would any other newborn. MANY people are going to be telling your sister how sad it is and how sorry they are. While having a child who is born blind may feel sad to your sister right now, it won’t always feel like that to her, but she will continue to hear those ideas from people who don’t really know her family at all. Don’t be one of the people saying you’re sorry.

Some basic practical day to day for this age (as a parent of a VI child) depending on the childs condition, get car windows tinted , black and white toys or bright lights flashing noise making toys! It really will be fine, yes there are struggles but now, immediately after diagnosis, she needs to hear it will be fine. Yes sign up to all supports available but most valuable for me was parent support groups on FB and the coffee morning meet up types. Professionals like TVIs are great, same for OTs, etc. But nothing beats a parent who is s year or 2 ahead of you on the journey

$1

Some (definitely not all) people find this essay reassuring. Both of my children have special needs, although not blindness, and it rings true for me. Your sister will probably need time to grieve the vision of what motherhood and her family experience would look like. I suggest just letting her vent to you. Don't offer solutions or advice... she'll have plenty of people doing that. It sounds like you're already doing a good job of being there for her!

Don't coddle the kid! Make sure the kid with blindness has chores and experiences just like their twin. I'd say not to send them to a school for the blind if possible.

Blind kids are often overly sheltered and not able to be independent because their parents want to provide everything for them. Cane training and chores and experiences like other kids are vital.

You’ve gotten excellent advice and resources on how to help the baby, but I want to focus on your sister. My daughter was diagnosed at 4 months old and it was devastating. There is a grieving process that your sister has to go through. Every new parent hopes and prays for a healthy baby and she didn’t get that. Everyone in my family was focus on the child, no one asked how I was doing so do that.

That said, she needs to transition from this grief to thoughts of how best to support her child (see other resources). He baby is not dying, they are just blind and while that presents a host of challenges the baby needs her support to succeed in this world.

Please reach out if you (or she) has more questions or needs support.

It’s not the end of the world. Treat the child the same way but with a little adapting and the child will be fine. I am totally blind visually impaired about until 8 but then became totally blind. I am very much fine, lived a very full and very fulfilled life. A very inspiring and blind life. I could tell you stories but how much time do you have I’ve been publically recognized a few times especially once, a few years, for who I am, my courage, my boldness and dogged determinism. Etc..... Life is just starting to be a fun adventure and don’t shelter the kid.

Probably just having the understanding that it’s actually not that big of a deal would help the most. People think your life is over if you’re blind, totally not true, you got to meet other blind people and see for yourself.

Hi OP, my child is born blind. We found out about this 5 months ago when the baby was 4 months old.

Do look into my profile to see some of the posts that I’ve made and we have an Instagram account to chart our journey @blindandshine.

If you have any questions please feel free to ask!

Hi! If you don’t mind sharing even via dm which state you are in? As they aren’t all set up equally and as an uncle of a now teenage blind nephew, I have gone through the steps and paces to best aide my sister.

Ask for referrals to local blindness organizations. They can provide assistance to your family member throughout their lifetime. As an infant, they can help supply or recommend toys that make sounds so that a baby is motivated to kick or reach like any other sighted baby. As a young child, specialized teachers can provide assistance with teaching adaptive technology skills. The list goes on. While it will take some hard work, your family will be able to live independently.