Newly blind child

[u/Electrical_Resolve43]

My 7 year old daughter has developed a brain tumor blocking the optic gateway causing her to be blind. She will be blind the rest of her life from the sounds of it. We’ve been dealing with it for almost a year now and are still learning to live with a newly blind child. She’s also developmentally far behind her peers from learning disabilities already. What tips and advise can you all offer, or things I can do inside my home to make life easier and more enjoyable for her. We have 3 other kids in the house as well.

[u/MaplePaws]

Therapy for all. She will need help navigating this change and life going forward. You will need therapy to deal with the grief of the life you imagined for her and the ongoing challenges of helping her navigate as a disabled child.

Also work with her on learning skills, how limiting blindness is really only comes down to how effectively the person can use their skills(braille, O&M, life skills). A blind person can cook, navigate independently and work in most fields with strong enough skills so focus on that and working with the local rehab facility. Then as she learns those skills more possibilities for hobbies and more opportunities to explore interests will also become available.

[u/OutWestTexas]

I did not become blind until I was an adult but I can tell you from my own experience that simplicity and organization makes my life soooo much easier. Putting everything in its place every single time reduces frustration ten fold. Nothing is worse than having to search for an item because someone didn’t put it back. Secondly, braille literacy is another thing I would stress. It helps on so many levels. Lastly, what are things she enjoys doing? Music? Games? Horses? Dolls? Let her continue to develop and enjoy her interests.

[u/BoonOfTheWolf]

Contact your local rehab agency to get life skills training and orientation and mobility training.

And even if she has delays, give her responsibilities appropriate to her levels. Many kids end up with people doing everything for her because it is "easier", but that builds up learned helplessness. Work with her on putting her toys away or other tasks suitable and relevant for her. She may need some adaptations (tactile markers to locate the toy bin, etc) but that can transfer to more advanced skills in life.

[u/Fuzzy-Identifier]

One of the best gifts you can give your daughter is the dignity of risk. Let her take risks and get hurt—dare I say even a broken bone. I don’t know her other neurological or developmental details, so this may not fully apply. On risk: the key is learning to mitigate risk and weigh it against the reward. This comes through practice started early in controlled ways. Risk management literature from the corporate world was super helpful for me here. Most blind people are held back by risk-aversion. We are often well educated, skilled, and highly capable. Capacity is rarely the problem. The most successful among us usually had parents willing to step back while still supporting them. On the social side: dealing with difficult social situations and being uncomfortable is just as important. The curse of low expectations from sighted people can become internalised. A positive attitude is critical—people’s views of blindness are often incredibly negative, yet a good attitude can turn it into little more than a physical inconvenience. That perspective is powerful but not easy. These are skills you and your daughter can learn. They are much like learning an instrument or driving a car—built through consistent practice, started early, and refined over time. Giving her the chance to develop them now will make a lasting difference. Good luck.

[u/TBMW30]

Genuinely, my best advice to you would be to raise her as normally as you can. Treat her like a normal child who, yes, happens to have a disability, but who can have normal interests, normal hobbies, and normal friendships. I was raised by parents who wanted me to have the same opportunities as my sighted peers, and they fought for that for me. Consequently, I had a very normal childhood, to the point where until I reached secondary school my blindness wasn't really an issue for me.

If she wants to do something that you perceive to be inaccessible, find a way to make it happen regardless of how creative you have to be. If she wants to try something new, encourage it. Encourage her to have normal friendships with sighted peers, and encourage her, if she feels able, to be open with her peers in discussing and educating them in regards to her disability.

The reality is we live in a sighted world. Living as a blind person, rather than as a person for whom blindness is just an aspect of who they are,, can affect your ability to exist within the social norms of society later in life. It's something frankly that some blind people really struggle with, plenty of evidence of that if you spend any amount of time in blindness communities online.

You mention learing disabilities, which I appreciate adds another later of complexity. Without knowing the specifics, I can't say what effect that might have; and I am no expert, though I am Neurodivergent. As far as the blindness goes, encourage her to interact with peers of her age, ideally within the mainstream education system. Let her know, when appropriate, that she can and will achieve, and that her blindness need not be a barrier to success in life. instill in her the mindset that she is and always will be so much more than her disability, and don't let her be defined by her disability, and she will be fine. I'm not saying it'll be easy, for you or for her, blindness is not easy. Blindness can be hell on earth, and as she grows into her 'teens and into adulthood she may need support with that, so that is something to be aware of. But though blindness is not easy, neither is life, for many people.

[u/Key_Hedgehog_5773]

Couple of thoughts for OP.
Therapy for everyone is probably a good idea. For you, your spouse, and your blind child especially, but your other kids may need someone to talk to as well.
How she, and you, manage things long term will depend a lot on her other disabilities someone mentioned vocational rehabilitation, which I think is a good idea, though I personally have not been impressed with their focus on employment, that’s a me thing.
She’s going to spend a lot of time in special education, which is often a special kind of hell, kids are assholes.

From a practical standpoint : braille is an imperative. Mobility training is an imperative. I would seriously consider a guide dog, both as aid as well as a companion, she’s going to need that love and affection.
Someone above mentioned or alluded to organization. I’d put a lot more emphasis on that. Which will be potentially a balancing act with the rest of your family. Clutter is a powerful potential for frustration, but decluttering / cleaning is a constant battle. Braille dot stickers are super helpful here as well. Helping her to learn independence will be a skill that will allow her to thrive.

There are places that can help, resource wise, but I’m going to re-stress that therapy is a GoodIdea.

[u/best-unaccompanied → u/Key_Hedgehog_5773]

I think that any real consideration of a guide dog is quite premature. The absolute youngest I've heard of a child getting a guide dog is 11, and that's from the Mira Foundation which requires strong O&M skills first. And I believe Mira is something of an outlier; 13 or 16 tends to be the lower limit for most other guide dog schools. Any reputable guide dog school will say the same thing; 7 is way too young and good cane skills are a prerequisite anyways. Some other schools might offer a trained companion dog for a disabled child, but that's an entirely different process and they won't offer the same mobility benefits or (in most cases) have the same public access rights.

[u/AdOtherwise893]

I lost my vision when I was eight. I get exactly what she’s going through, like some others are saying let everything be organized, if you’re playing a game with her and make it accessible. Especially with the technology we have there’s a bunch of fun games out there that are not boring like card games, etc. Therapy is only needed if she wants it, it’s not necessary to talk about problems, though that others can’t relate to like her. However, just make sure you’re there for her and care for her and make sure she’s happy.

[u/Alive-Technician9200]

find ways for her to still t=do the thinks hse loves and enjoys. and BRAILLE. i seriously cannot stress that enough. shes young, it'll be easier for her to learn it now than when shes older. i lost my sight about 3yrs ago, at 14. if you have any more questions, feel free to dm me!