I’ve been wanting to post more about the light box therapy we do with Noa – but I’ve been having some technical difficulties with my video clips so I'm going to post this now and I'll just have to keep trying with the video later. Frankly, I don't even know how much sense it makes without the video...
The light box work, and a lot of the work we’ve been doing with Noa is based on the work of Dr. Christine Roman. Her theories and therapies have only recently come to be more widely accepted. In fact, a surprising number of people who work with CVI kids have heard of this therapy – and of Dr. Roman's CVI assessment scale – but don’t know what it is. Even at Noa’s school! The first time I approached them wanting to get this therapy for Noa… well, I didn’t get very far. Undeterred, I tracked down Sandy Newcomb, in Maryland, who trained with Dr. Roman. She came to meet with us and access Noa at my parent’s house. If the school wasn’t going to do it, I’d do it myself! Sandy gave us SO much information!
For example, CVI kids tend to shake or move their heads a lot - this used to be viewed as a way for these kids to experience vestibular stimulation (movement), but as it turns out these kids see things more clearly when in motion (seeing motion is easier than seeing something that is still - which makes sense, things that move catch our attention before we know what they are). So Dr. Roman has taken this and other CVI traits and asked - what useful information is a child getting from this behavior and how can we use that.
We thought that Noa would have a very low number on the CVI because it seemed to us that she didn't use her vision at all. But Sandy pointed out ways in which she seemed to be using it, that we'd just never considered. Notice I say that she is "using her vision" not "seeing" - we don't know that she is using that imput in the say we would "see" something. But she is getting information that could be useful in terms of figuring out the space around her, or where an object is.
One of the things I love about Dr. Roman's point of view is that she works from the assumption that there is a purpose to what these kids are doing. A lot of CVI behaviors used to just be chalked up to what we used to so charmingly call "mental re-tardation" or cognitive impairment. The more I learn, the more I find that to be an easy answer that lets people off the hook - makes it easy to say that they can't do anything.
Sandy helped us figure out how to use the light box - and what kind of real goals we should have. Over time, Noa started to make some clear progress. Small, but clear, and in time, the principal asked for Sandy’s contact information and we are tremendously grateful that they arranged for her to come up and do a one-day session to help them work with CVI kids there.
But the light box work is only a part of what Dr. Roman advocates. In a nutshell, one has to keep things uncluttered for CVI kids. It’s really about keeping things very simple and in effect, teaching the brain to recognize visual information. The light box is especially helpful because it gets rid of all distraction, and because a lot of these kids are attracted to light, it provides a clear, specific fous. You start out simple with transparent color blocks (most CVI kids like red, blue or yellow – Noa seems to like blue best). At first, it can take a LONG time for a child to notice the block, and a long time for them to touch the block. It is a very slow process. VERY slow.
But beyond the light box, it is important to present visual information in as uncluttered a way as possible – so we totally designed our life-style. No bookshelves full of books in the living room. No colorful play area: white shelves, white cabinets and white bins (and few key blue ones), a plain rug with no design – and I have to say it made a huge difference almost immediately! It gave her a greater sense of space. All that colorful kids stuff was just overwhelming her!
Okay, so I know what you're asking: Does this mean Noa can learn to see?????
Well, not really. But she can learn to make better use of the visual information that is getting to her brain. Every kid starts at a different place with this, and every kid gets to a different place.
The sites below offer some background on the theories behind this work:
http://www.pattan.k12.pa.us/files/db/cvi.pdf
http://www.tsbvi.edu/Education/cvinotes.htm
http://www.scsdb.k12.sc.us/Deaf_Blind/News%20Alert%20summer%202008.pdf
And this video includes an interview with Dr. Roman which is pretty informative. http://video.aol.com/video-detail/cortical-visual-impairment-treatment/2680146338
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