Nystagmus, Black Spot of Vision and the Next Steps

This tickles my funny bone. So, my husband has the day off from work today. He calls me (at work) and tells me that his best buddy also has off from work and they're going out to breakfast like a couple of old men! Rich, my husband, is 30 and his friend, Mike, just turned 40. To help you visualize this comical picture, I'll have you know that Rich and Mike are commonly referred to as Yogi and Booboo. Mike is towers over rich being at least 6'4" and Rich is 5'6". They're a funny pair, but I'm glad Rich has a good friend like Mike.

Mike also has a special needs child. His son has downs syndrome and suffers from nystagmus. He's a sweetie. Emily's nystagmus isn't too pronounced. Somebody wouldn't notice it unless they were staring into her eyes. And it doesn't happen all the time. It seems to get worse when she's tired or stressed. I only notice it strongly in one eye (her right) and occasionally I see her wiggle her head, as I'm told children with nystagmus might try to do to compensate for it. But she only does this very rarely.

On the other hand, something that she does very often is lower her chin, tilt her head down and look intensely at strange things or people, with a slight squint that gives her countenance a fierce lilt. I've labeled this common occurrence as her "scrutinizing eyes." It is very intimidating - and often strangers take it as her not liking them... when really I think she's just trying to see them.

From what I've read, achromats may have a small area of vision loss directly in the center of their eye, which I've come to think of as sort of like pixels missing from an LED screen (because they are missing on our digital camera! - my fault - I left the camera in the freezing cold car once and now a few pixels are missing from the center of the screen... weird!). So, as an achromat, perhaps Emily tilts her head to look around this void in her vision.

Today I'm making it my mission to find out what to do next. My big question is - do I qualify for, and if I do - how do I receive - special aid? I've left messages at the specialist who diagnosed the condition using an ERG (electroretinagram) and at a local low vision specialist. I also called the nice mom who tipped us off that Emily could have this condition. I'll tell that story later. As well as the ERG experience. Both tales are tearjerkers.