Probably just talk to her? Using examples like how people are different hieghts, hair lengths, hair types (straight/curly), like different foods etc.

Just be honest with her about it. It might not click for her right away what it means but she'll at least know about it. Tell her about other colorblind people. It's really rare for girls to be colorblind, so you could phrase that like it's something special or unique.

The gravity of the situation will sink in over time. But it's best to try and get her to be familiar with using a cane. And audiobooks! Having trouble reading is no excuse not to read through audio.

I think my parents showed me a bunch of paintings and said that everyone has different ways to see the world or something. But they were very open about my blindness.

Maybe start trying to explain her vision differences in a kid friendly way. "most people are able to see the entire tv all at once! But sometimes there's people that can only see this part of the tv."

Have you ever tried writing a story yourself? I wrote one for a friend's child (maybe 4? at the time, it's been a while) who needed to go through some rather unpleasant medical tests - there wasn't anything already published for that either.

The whole getting scared when covering the good eye thing I can really relate. And for me that fear was because I noticed that my vision was getting worse and I knew it would continue to get worse. So when I covered my good eye all I could think of was,” how much longer until this IS what my good eye sees and my bad eye sees worse than this?” It can be scary especially to a little kid.

Maybe if you don’t know a good way to describe it then you could ask her doctor next time to describe it to her in a way that a little kid could understand (they are usually good at that) if he hasn’t already. Since I know I started feeling better when the eye doctor would explain what was going on with my eyes to me. And encourage her to ask questions if she’s confused.

I also don’t like to describe how things look like but that’s just because I’ve gotten bad reactions before like,”wow you’re so blind!” Also though sometimes people ask me like what a object a few feet away looks like in the room and it just looks like a blob of color to me and there’s no other way to describe it. I don’t like thinking about how things around me look so different then to other people though because it can suck knowing that I may be missing out on something.

In public I can get really anxious because people can really get in my way and make things so difficult for me and not understand. So I must fidget with something (I also have autism though so I’m not sure if this is a mix of my anxiety and being legally blind or my autism maybe all). So I fidget with something. A infinity cube(my favorite), or fidget cube, soothing stone, or a tangle. It helps to ease my anxiety and give my self something that I can focus on but doesn’t distract me.

I’m legally blind and 16 and I don’t really remember being 6 I do remember being 8 though. So different age I can remember so take it all with a grain of salt and also that not every one feels the exact same way when it comes to vision loss.

My 5 year old also has an optic glioma and has lost a lot of her sight. She is colour blind too, and has lost her peripheral vision. We are still working out the extent of what she can and can’t see, as you would know kids aren’t the best at being able to communicate this.

We’ve tackled this as someone has already suggested above- everyone is different, everyone has their own strengths and weaknesses and it just so happens that your vision is not as good as many other people. Honest and direct, and not sugar coating anything. She knows her vision is worse than other peoples, just like she knows that some of her friends are taller than her and some are better dancers.

We’ve spent a lot of time teaching our daughter to advocate for herself- if she can’t see something, she will tell whoever is in ear shot and let them know it needs to be brought closer to her or she needs to move closer to whatever it is. We’ve done this through practice at home by setting up appealing activities (e.g fav tv show) at a distance where we knew she wouldn’t be able to see so she got to practice this in a safe environment.

Good luck, it’s a tough road.

First, hope you’re doing well grieving your daughter’s vision. You need to be strong and positive, at the end you both are going to make it, just need to be creative and patient 💜.

I have low vision and almost all my childhood I was gradually loosing a little bit of vision. From my experience, listening to my parents read books, describing situations, landscapes...people sparked my curiosity and ability to describe how I saw and perceived the world. You can read books to your daughter and use the characters as a reference point.

Communication is key to ease the fear and build confidence. Try to make her communicate all her fears and challenges. In hindsight this is something that would helped me to be more open about my eyesight, I’m 30 and still have problems communicating my needs. I have closed myself regarding this topic, and I only share my struggle in forums/Reddit and it’s hard.

Best wishes.

You may wish to consider seeing an art or music therapist for her

Hi. Maybe ask her TVI to conduct a functional vision assessment. It basically involves her teacher conducting various activities with your daughter to assess how your daughter utilizes her current vision to complete tasks. For example, her teacher might do a speed reading test with passages at various font sizes to see if large print can help your daughter read more easily. A functional vision assessment is especially helpful when working with kids who are not old enough to explain what they can see. You could also ask her doctor for a referral to see a child life specialist or a social worker who is experienced at working with children to help explain vision loss. I found a video in which several individuals explained their visual impairment cause and what they see. Your daughter might be a bit young to understand everything in this video, but hearing other blind people explain their vision loss might help your daughter warm up to talking about it.

https://youtu.be/E_XKRdQc_6A

You might find this guide on explaining a visual impairment to a child helpful.

https://www.rnib.org.uk/sites/default/files/APDF-ENG170108_Tough%20talks.pdf

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I think it’s important to be honest- but also focus on the positives- what she can do, and can see... rather than what she can’t.
It’ll be a learning curve for her and It’s totally natural for her (and her parents) to be scared.
Just take it one step at a time.


In terms of asking her what she can see- play games focusing on describing something - start off with trying to make up the strangest weirdest animal ever that doesn’t need sight to create- then slowly start turning it to stuff she can see

I’ve been VI since birth and doctors used this for me, eventually getting me to tell them what I could see out the window