Saturday, March 15, 2014

Irlen Syndrome

(Note: Another blog post despite Lent. My experience yesterday has been surprising, and possibly important in my pursuit of answers.)

For years, I've known there was something wrong with my vision. I just didn't know what it was.

About a year ago, I started working with the Idaho Commission for the Blind. I met them through services for Abi, but when Shane found out about my eyesight problems, he asked me if I'd like to also pursue assistance for myself. Since I have never been diagnosed as legally blind, I was skeptical.

It turned out that although I'm not legally blind, I do have significant functional vision impairment.I've written before about receiving accessible reading material through BARD, which has been a blessing.

Along the way, when Shane heard about my vision symptoms, he said, "That sounds like it could be Irlen Syndrome."

Huh?

Of course, I started researching. In a nutshell, Irlen Syndrome is a profound sensitivity to certain wavelengths of light that cause the brain to become overstimulated. This leads to different effects in different people, but common symptoms include a lack of depth perception, difficulty or fatigue when reading, a misperception of motion, trouble with faces, headaches and visual stress. Sound familiar? Well, it felt like someone was looking inside my brain for the first time.

On March 14, our family drove to Spokane where Little Mister and I were scheduled to be screened for Irlen syndrome.

He was determined to have a possible or mild case; I was diagnosed with a severe case.

No surprise there.



The main treatment is colored lenses that block the wavelength of light that causes the most problems. They also use colored overlays on reading material. Different colors help different people. I spent hours going through combinations of colored lenses and reading charts, papers and samples, as well as looking outdoors at distance objects, depth and light.

At this point, I'm still a bit of a skeptic. I've been to so many different eye doctors and had so many different lenses prescribed that I'm reluctant to get my hopes up for much improvement. Still, this time, the questions were different. "Does the text move or shake on the page? Do walls or objects sometimes seem to loom toward you? Is it hard to sort out what you're actually seeing?" Well, yeah. But I've never admitted these to anyone for fear of being called crazy. "Does this color improve your perception of depth when looking at a staircase?" Surprisingly, yes, it does! Instead of the stairs looking flat, like a photograph, they actually look as if they have dimension, and I don't have to feel with my toe to accurately locate the first one!

My glasses have been sent off  to a special lab in Seattle to be tinted. Weeks from now, when they come back, I'll start wearing the special color that has been chosen for me, and see if some of the visual chaos that I experience daily goes away.


This poster, (source) really first piqued my interest. While the cynic in me admits that everyone uses brain scans to legitimize their pseudo-scientific claims, this photo made so much sense merely in terms of what I experience. Overload. Too much info. Fatigue and disorientation constantly. Maybe it looks like a brain on overload, and maybe it doesn't, but it's the first time anyone has acknowledged my crazy symptoms and legitimized the idea that we really know so little about how the brain works that we may indeed miss a perceptual processing disorder like mine.

Another interesting facet of our evaluation was the tester asking me how I've managed in school when I could seldom see the board, often could not read the texts for extended periods, could not find faces or navigate stairs comfortably. When I described the ways that I developed an acute memory for aural input, honed my listening skills, grabbed info off the board on the way out of the classroom, etc, she seemed very impressed. For the first time, someone acknowledged how hard I have worked to achieve success, or how the daily amounts of stress I endure exceed what most people can imagine.

It was an odd feeling.

Hiding my struggles for twenty years, and then stumbling to try to explain them for the last three or four years has still never resulted in anyone understanding this in any sort of meaningful way.

Until yesterday.

I'm still processing what that means.

I guess I have a name for one more piece of the puzzle.

6 comments:

  1. That is so interesting!! I'm glad you are getting some answers ;)

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  2. Erin, this brought me to tears. I'm so very happy that you are finding answers and understanding.

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  3. I am so sorry that your journey has taken this long. I know how frustrating it can be and also understand your skepticism. I will be in prayer that when your lenses arrive they will be exactly what you need and that you will find relief from the symptoms that have plagued you for so long. This even is sinking in as a great Lenten lesson as well. Agreed?

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  4. I have been wearing my irlen glasses for a month now . There are amazing

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  5. Irlen screening is a standard part of testing for dyslexia in Scottish schools. My now 23 year old son was prescribed Irlen sheets for reading certain types of print when he was 14. They helped particularly well with reading music scores (Suzuki viola).

    I hope you find a lot of benefit from your glasses.

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  6. I'm so glad you found a solution to your difficulties. I wish knowledge of Irlen Syndrome was widespread, especially among educators. I am a teacher who discovered Irlen Syndrome accidentally while tutoring a student after school (second job while a casual teacher) and the remarkable change in his ability to read and retain focus and improve his marks once he was diagnosed was so impressive that I had to find out more. I paid for the training and am now a screener. I've found so many students at the schools I've worked at who have this, and many of them are senior students. I've paid for some students to get the glasses when they can't afford it, and I've talked to Head Teachers about letting me do some training with the staff - but there's still a resistance among the faculty, even when they can see a difference. They think it coincidental, it's just a fad or a scam that I've caught myself up in. It's horrible for the students because it means that so many of them don't get the help. I've even screened two teachers who have the issue and I hope they'll take it further and get the glasses. My aim is to increase awareness with teachers and have the schools I work in accept it as a legitimate issue requiring special provisions.

    I wish, Linda, it were the same here, but Irlen Syndrome has gone out of fashion in the realm of Special Education here it seems :(

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