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Blind and Visually Impaired Community

Full History - 2015 - 09 - 24 - ID#3m6hbu
2
Congenital Stationary Night Blindness (self.Blind)
submitted 7y ago by toomuchweightloss
After an ERG, we were told that this is most likely what our son has, but it's not confirmed yet and I guess can't be until further testing over time to make sure it's not progressing? What we do know is that he has a small part of the inner layers of the retina that don't respond properly to electrical impulses.

Does anyone here have experience with CSNB or other disorders of the inner layer of the retina? I don't really know what we're looking at. For what it's worth, it does seem like our son can see at least a bit in the dark. He's two, but can find his door and light in the dark.
geoffisblind 1 points
I don't have what it looks like your son might have, but I do have night blindness, in low light and darkness I have no functional vision. Are you looking for ways to manage difficulty in low light/ darkness? I can help a bit with that, unfortunately I can't provide insight on that specific condition although my eye disorder is retinal as well.
toomuchweightloss [OP] 1 points
I guess I'm looking for any and all information. Can I ask what caused your night blindness? How severe is it? How old were you when you found out? What coping mechanisms do you use? Also, I've heard anecdotally that night blindness is hard to get services for because you're only blind 50% of the time. Have you found that as well? In what country?
geoffisblind 1 points
Alright I'll give it a shot :) Please forgive me if this gets long. I am an 18M located in the United States. My cause of blindness is Leber's Congenital Amaurosis (LCA). I have three major symptoms:

* Night blindness
* Restricted peripheral vision (I have a very narrow field of view)
* Sensitivity to light

I have some functional central vision but I need some pretty heavy correction as well as magnification and color enhancement in order to read. LCA is very similar to Retinitis Pigmentosa if you are familiar with that condition, and it is a genetic, degenerative retinal condition. My vision is holding steady where it is for now but the future isn't 100% certain as to whether I will lose more, when that might happen, how much I will lose, etc.

My parents first noticed what they thought were problems with my vision when I was learning to walk. They noticed I would trip on things and walk into walls but it was obvious that I could see some things. They consulted with a doctor who thought the issue was just that I was an overexcited toddler who wasn't paying attention. Come Kindergarten I struggled to read letters on a page and I was having trouble with recognizing objects that were low contrast. My parents took me to a different doctor who ran tests and gave me the diagnosis of Retinitis Pigmentosa at the age of 5 (re-diagnosed with LCA at age 13). So essentially I've had this since birth and we noticed when I started school. With a diagnosis we were able to start looking for solutions. It sounds like you are already ahead with your son, and that's awesome!

My night blindness is pretty severe. In the dark I have no functional vision, I can't see shapes or shadows, it's just darkness. If a place is adequately illuminated (basically completely flood lit) then I can use some of my vision but this is almost never the case and often the extra light messes with my overly sensitive eyes so it's kind of like fixing a problem with something equally terrible. Street lights tend to just throw me off because I don't get enough information so I don't trust anything visual I get at night. It's to the point where my orientation and mobility instructors advised me to just where my shades at night because I wasn't getting any useful information either way and the lights were uncomfortable. Hopefully that gives you some idea on where my night blindness is. If you need me to elaborate on anything let me know.

So I'll discuss coping mechanisms in the order that I implemented them since your son is still very young and some probably won't work for him yet. The first thing my family did was learn how to use sighted guide technique. This worked well for going out at night, to movie theaters, etc. Leader Dogs for the Blind has a pretty good explanation on how to do sighted guide $1 under the heading "The New Leader Dog Handler." This is for aiding with introducing a guide dog to a new environment or workplace with their handler but the same basic principle applies.

To give a brief crash course, the visually impaired person should take your elbow and the guide should walk about a half step in front of the visually impaired person. The guide should not push the person being guided, but rather pull them. In addition the guide should call out obstacles. This doesn't really fully explain it but further down I'll explain how to get professional help with this and other things.

This technique does work well, and it served well. However as one gets older they don't want to use this as much. I wanted to have my independence and to be in control which I think is 100% natural, and I still feel that way. I also like not being dependent on sighted guide because someone I trust to give sighted guide is not always available. I am a public transit commuter and have been offered sighted guide from random people and I will never take it, it's a major safety issue for me.

For those reasons I currently employ two mechanisms and I have a third coming. The first step I took after I decided I wanted to shift away from sighted guide was to get a flashlight. I like the Streamlight Protac 2L because it is small, lightweight, super bright, and good on battery life. I still carry it and it definitely illuminates a path. However I don't rely on it anymore because I shifted to a white cane. This was in large part because of new struggles I was having with peripheral vision. I use a white cane day and night because of my sensitivity to light and lack of peripheral vision. I find that my eyes play tricks on me either way and having tactile confirmation that I'm not going to trip on something is important to me. Not everyone likes a white cane though. If he isn't going to have trouble during the day then this may not be something he wants in the future. The one thing I would say is that a cane can be folded and stowed in a bag when it isn't needed so it may be useful for him in the future.

The last thing is that I was approved for a guide dog last week (so excited!), so come June 2016 I will be replacing the cane with a dog in day to day operation.

Ultimately when he gets older he will have to decide how he wants to cope with it, but these are the ways I have used/ currently use/ will use to cope with mobility issues. For now I would look into sighted guide because that is something you can implement as soon as you want and it is very easy to use, learn, and teach.

When you want to figure this out with him I would get in touch with an Orientation and Mobility Specialist (O&M). The O&Ms I have worked with in the past all had Masters Degrees in this specific field on top of whatever other Bachelor's they earned. They are very good at what they do and are incredible resources. They can teach you hands on how to do sighted guide and start giving you tips on how to manage night blindness. If you develop a relationship they can give lessons to your son on how to navigate in the dark and should he opt for cane training they can provide that.

This sort of gets into the next question of resources making themselves available to him since he is only night blind. In my experience I have had really no trouble getting services. I also have a lot of other problems with my vision other than night blindness so it's not exactly the same situation you and your son face. I received training from two entities and I'll explain my experiences with both.

The first entity that I received training through was my local Department of Social Services, Rehab Services for the Blind division. I met with one of their O&Ms once every couple weeks to every few months depending on how much they were in demand. This was alright training but it was very spaced out, I was split between two instructors, and I couldn't practice in different lighting conditions because they did not pay their staff to do night lessons. The DSS also appeared to have enormous amounts of red tape to cut through and it was sometimes frustrating trying to get what I needed even though my caseworker was trying to get me help. These are still good resources but they often take more time and work to get what is needed.

While I was working on this I was put in touch with a local organization who put me into an intensive 3 week O&M course with private contractors that they hired and some O&M interns working towards their certification/ Masters. I worked with an O&M and her intern every day for three weeks on solo lessons. The student to instructor was 1:2 for everyone in this program and it was awesome. I was given the opportunity to go out on night lessons pretty much every night and had tons of day work. I did not pay a single cent for this service. My local Lighthouse for the Blind also offers free night O&M lessons with one of their instructors, so organizations do recognize the need for these kinds of services.

It is for this reason that I would look into non-profits in your area and start talking to their coordinator of services about what they can offer. In addition to training they may have more free programs that interest you. You can google your area for organizations that aid the blind or you can look in this sub's Wiki in the organizations section. It is still in development and more organizations are being added but it may have something that can help you.

I think that about covers all of your questions, sorry if I went overkill on information, I wanted to make sure you have all the information you need. If you need me to elaborate on anything or have any other questions let me know. Good luck!
toomuchweightloss [OP] 1 points
Thank you very much for taking the time to type all of that out--it's very appreciated and I'm sure I'll be referring back to this comment over time as we get more information.

We were indeed lucky to find out so early. Our son had repeated eye infections due to a blocked tear duct (incredibly common) in his first year and was referred to the Children's Hospital when it didn't clear. The ophthamologist confirmed that his duct had opened (six months later now than the referral) but was thorough and always gave all kids a full eye exam, since they were there anyway. Her thoroughness is what led to the spot being noticed and a referral for an ERE.

So far, he really seems to have no impairment, but then, he's 2. He's not exactly out in the dark much, but does seem to be able to find the knob of his door at 4:30 a.m. without difficulty. So what his struggles will be will have to wait at least another year until he can explain himself better. We also only have a "most likely" diagnosis of CSNB, because it's mild and there's no way to know yet if it's progressive. So I do know about RP and will be reading about what you have, since they would both be on the differential list.
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