Advice for mum of 4 year old with a severe vision impairment(self.Blind)
submitted by jb8686
Hi everyone. My 4 year old daughter has a vision impairment as a result of a brain tumour that is located on her optic nerve. She is almost blind in one eye, and has approximate 20/200 vision in her other (still working this out as it’s obviously hard to test a 4 year old). She also has lost a lot of her peripheral vision.
Given your experiences, what advice would you give me about how to best support her as she gets older? She will be starting school next year and I am terrified of what the world will hold for her without me helping her. I can’t imagine what her future will look like as it’s going to be so different to how I grew up- for example, she’ll never be able to drive. We’ve known about her vision loss for almost a year now, but I’m struggling to get my head around what this thing we call life can be for her.....
Sorry I know that’s not a very clear question
Zeebaaraa11 points2y ago
Hello! I am blind in one eye and about 20/200 in my other eye. My vision has been stable for my entire life (I am 32yo now) so I have not known any other vision. I would honestly just say to adapt what you need and treat her to same otherwise. This might be my personality but I never wanted to feel like I was being treated differently or "special". I would say build her confidence of being able to do whatever she wants and she might just have to find different ways of accomplishing things. Show her you believe in her and her abilities and I think it will go a long way! My parents had 2 different outlooks. My dad had the she can do anything/treat me the same approach and my mom was always worried and didn't let me even push a shopping cart. My mom's approach made me self conscious and question my own abilities. Anyways, just my take on it! Best of luck to you!
TheBlindCreative9 points2y ago
In addition to what everyone else stated, provide your daughter with a digestible explanation for the cause of her vision loss. People will ask her about the cause of her vision loss, and she should have the ability to choose how much she shares whether she describes the actual cause, chooses not to answer, or comes up with something different altogether.
Also, what will her vision look like long term? Will she potentially loose more vision? If yes, make sure that she learns blindness skills like reading Braille, using screen readers, and etc. It can be easy to over rely on large print and magnification if a person has residual vision. Even if there isn’t a risk of loosing more vision, your daughter should have the ability to decide on what skills that she chooses to use.
LadyAlleta5 points2y ago
Put her in clubs. Girl scouts. Go camping. Ride a bike. Do chores. Homework every day. Going for walks. Swimming. Cooking! Especially cooking! So many people with blindness don't know how to cook.
It's a shame to admit but most of the time the reason a person with blindness is dependent is because the parents will over shelter them to the point they can't breathe without someone there.
She's going to fall, probably a lot. She's gonna cry. She's probably gonna face kids who don't understand she can't see. But it's important for her to be around kids anyway. If you run over to her anytime she trips and make a huge scene she'll learn that it's scary. So try not to coddle her.
Encourage her to start using technology immediately. Using her phone camera to zoom in on things. To read/see stop signs. To use a computer. To use map apps and Google search. This might seem kinda weird but tech is honestly the most accessible inovation for the blind community. Period.
alyswin1 points2y ago
If you’re in the US, NWABA.org is a nonprofit fostering independence for those who are blind and visually impaired through sports and physical activity. I work for the nonprofit. Our offerings are PNW based, but we do virtual activities like yoga, small exercises etc, almost daily, all free!
SeptemberJoy5 points2y ago
First up I have a different eye condition to your daughter, so hopefully the following is good for general advice.
Support her to be independent (age appropriate of course). Advocate for her needs with teachers. Her experience might be different to how you grew up, but it's going to be normal for her. My vision is currently counts fingers (worse than 20/200) and has slowly worsened with age - I'm not a braille user, but I do read audiobooks. I access reddit by magnifying as needed. I wish I had been encouraged with audio more when I was younger. I was a voracious reader... the amount of eye strain and headaches I had, and the feeling of loss when I could no longer read regular print was hard.
Seriously - encourage independence as she grows. Teach her how to cook safely rather than worrying it's too dangerous. Teach her what to do if something goes wrong (e.g. explain how a fire blanket can put out small kitchen fires) so if the worst does happen (unlikely) she will know what to do and not panic. Long cane training could be useful, or orientation and mobility sessions on how to use the vision she does have to give her more confidence. I still use O&M skills I learned near 30 years ago - if I'm on the bus I might not be able to read street signs, but I know when it goes over a bridge and that my stop is next.
As for driving... I've driven multiple times - growing up there was a program for VI teens to go on a camp to learn to drive simply to have the same experience as their peers were having. As an adult I've driven around a race track at high speed more times than I can remember thanks to a Lions Club program. I might not be able to drive every day, and yeah at times that can be frustrating (trying to get the cat to the vet is a juggling act), but I don't have to worry about car payments, insurance or drivers with road rage.
For what it's worth - I've got my BA(hons), Masters, and if I ever get off sick leave for unrelated stuff I've nearly finished my PhD. I've got gold medals at a national level as an archer (para games), have traveled internationally, play D&D with a solid group of friends (if I'm ever well enough again...) and so on. Life will be what she makes it. My attitude when someone tells me I can't do something due to disability has always been "Really? Watch me".
You have a lot of information to digest and a few million worries floating around, it's okay to be overwhelmed. I'm sure there is stacks more that I/others could suggest. The most important thing is enjoy the relationship with your daughter.
accessaces4 points2y ago
From my experience the best thing you can do is let her have the experiences she wants to have. anything can be modified if necessary but it's always fun to let her try and do as much as she can. you may think now that there's a lot she can't do but there's a lot she can do and I think you need to let her try and let her keep trying as much as she wants to. Even the trying can be fun and if she doesn't try she will never ever succeed at anything. She can ski she can ride horses she can ride bikes she can sail let her do whatever she wants to do driving a car isn't everything, in fact it's almost nothing.
siriuslylupin63 points2y ago
Don’t baby her treat her like any other kid. Adapt but don’t baby or handicap. Don’t shelter her encourage independence and there is no need to hold her hand and baby and codle her.l
Relax and have fun. Get her the appropriate services so she can function like johnny and you should be good. Keep her out of the vision room if she doesn’t need to be there yes basic training of braille but she doesn’t need to be there all day. Keep her out of special needs classes.
Push her and up the anti like you would for any old sam or johnny.
Have fun and relax.
Collierr2 points2y ago
Don’t take any shit from the school. They will try to tell you what is best but remember she is your child and you know what’s best for her. If she needs something fight until she gets it
oncenightvaler1 points2y ago
Most important: Get your child some Braille instruction. Audio books are great, but being able to read on your own is crucial for academic success.
Try finding as much described TV and movies as you can, a good place where you will find a lot of your favourites is www.audiovault.net One thing you can do immediately is start teaching your daughter the "clock system" for finding food. The plate is a clock and every region of the plate would have food on it. It will help her develop fork and knife skill.
don't know too much but feel free to message me with any particular questions.
dupersuperduper1 points2y ago
You might find it helpful to look at lucy edwards on YouTube and tik tok. She has videos about how she does things and is really independent even tho she is blind
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