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Monday, August 29, 2005

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Rhonda Stone

Ms. Ditz, if Gallileo were alive today you'd support his burning at the stake. Just because YOU do not understand scotopic sensitivity/Irlen syndrome, it does not mean that it does not exist and with its symptoms effectively addressed through what is essentially color therapy. You are doing harm to those you seek to help by your own narrow mindedness. Sufficient research DOES exist. Stop promoting a lie. Follow the research of Arnold Wilkins, Ph.D., past, present, and future--especially in the coming year. SS/IS/MIS (Meares-Irlen syndrome--the condition's "other" name) is as real as cancer and as problematic as so-called phonological processing problems.

The American Optometric Association now acknowledges that it exists; it is gaining acceptance among ophthalmologists in the United Kingdom; it is listed in the Encyclopedia Britannica; as well as Wikipedia.

May science triumph over small minds.

Rhonda Stone
Parent advocate, children's reading issues

Mrs. Tammy Sonnen

Ms. Ditz~

I have worked with children for 16 years privately and within the school systems. I am currently a student at our local college and have chosen as my topic of research, Irlen Syndrome (also called Scotopic Sensitivity Syndrome and Meares-Irlen Syndrome). I have read through the bulk of the information you cited and can tell you that the information is neither correct nor up-to-date. The article by Alan Bowd and Julia O'Sullivan is critically flawed and very skewed. I followed up on their research and found that they used only small bits of what they found and tweaked it a bit to suit their needs for the article. Much of what they cited neither supported nor denounced Scotopic Sensitivity Syndrome calling for further research.

In my work over the years with children, I can tell you that there is truly something going on. Whether we call this Irlen Syndrome, Scotopic Sensitivity Syndrome, or something else doesn't matter. The fact remains that there are many young people and adults who are impacted in a negative way by the light in their world and how their brain percieves it. For many, colored screens or lenses alleviate the problem. We cannot continue to ignore this and what these people are telling us.

Every Day, I work with students who would benefit from the assistance offered by colored overlays or lenses. Yet, they are denied the opportunity to even try them out due to the narrow-mindedness of people who think like you.

If it helps them, why not give it a try? There is no more harm done by trying it and having it not work, than by trying the miriad of other "fixes" that are perpetuated by our public school systems. For these few people, all of these "fixes" fail--many at great monetary cost to their families. This is one more tool that could be at the disposal of educators and students. It should be used.

In my research, I have read mountains of research and information on this topic. Currently, it appears that all professionals (including many educators), have come to the conclusion that there is true merit to this condition. In my own experience, I believe there is truly something to it.

I recommend that you, Ms. Ditz, read Rhonda Stone's book, "The Light Barrier". It is well-written and well-researched. I also suggest that you work with students who are helped by these devices. Talk to them. Ask them what they see without their lenses and overlays. Please do not deny them and people like them the simple things that help make life a little easier for them.

Mrs. Stone, if you happen upon this entry, I am searching for more updated information for my research. If you have any, I would appreciate it. Thank you.

Rachel S

My daughter - up until 3rd grade evaluated as gifted and talented, and while currently readying at a 5th grade level at age 8 - has complained about specific, somewhat bizarre symptoms regarding her vision since pre-K. This is in SPITE of her vision being 20/20 and her eyes being perfectly normal. These weird issues include:

-black on white hurting her eyes and stomach
-pain in looking at "sharp" items (such as -scissor points, pins, etc)
-florescent lights being extremely, brutally painful for her
-musical notes printed as black and white on paper being nearly impossible to read, despite her musical talent and education
-the black and white piano keys being difficult to look at

My optician can find nothing wrong with her, visually, and she is scheduled to see a pediatric opthomologist next month. Additionally, I have suspected, in spite of all of her educational achievements, that she might be dyslexic.

While I am having her evaluated for dyslexia, the moment that I saw information on SSS, it put all of the "unrelated" and "odd" complaints into focus, so to speak. On one web site about this, they have a short writing displayed on 6 different colored backgrounds. I simply asked my daughter if any of them seemed easier to read. Immediately, she said that the white, blue and green backgrounds were painful, the yellow and lavender were OK, but that the rose was MUCH better.

I gave her no mental clues about this, or any warning or build-up. I simply asked her to come and look at my computer screen, to read the writing on the various colored backgrounds and to tell me if any of them make the reading easier or if any of them felt better. Her response was immediate. In fact, when looking at the light-blue background she got eye pain and had to look away. She was very clear on the fact that the rose background wasn't painful to look at at all, and that it was much easier to read.

This seems so simple and obvious...why would I ignore this easy, and relatively inexpensive solution to something that is so painful to my daughter?

Despite what you have written, I would be neglect as a parent to not investigate overlays as something simple to ease my childs physical pain with black and white. This does not mean that I would ignore the dyslexia testing, but it is too coincidental that her particular array of issues are EXACTLY the symptoms listed as SSS. Truthfully, I couldn't imagine what could be causing these strange reactions to specific color and light-related issues.

I intend to have her tested for SSS. If she is diagnosed as having this - and it seems certain that she would - and overlays help to relieve her symptoms, then that is all of the information that I would need.

For me, the proof of the pudding has to be in the eating.

Tania Dutton

Having come across this website whilst looking for more information, I was shocekd and appauled at Ms. Dirz's comments and felt compelled to describe the shear hell that I am currently experiencing, in the ohpe that it will encourage people not to pass of fScotopic Sensitivity Syndrone as she has done and the use of tinted lenses in this and othe conditions.

Firstly a little of my history:-
I began to have migraines at the age of 11 and my migraine seizures (due to migraine with aura) caused by flickering, flashing and flourescent lifhts, began at the age of 13. Just before my 14th bithday I was perscribed propanolol an a phenomminal amount to control this (I was later told it was enough to nock a grown man out! And that was what was keeping me conscious!). When I was 14 someone I knew through the Girl Guides recomended that I be tested for tinted lenses as these had helped her daugnter no end. I was given greeny-blue lenses which really helped me. A few months later my Spanish teacher expressed concern and recomended that I be tested for Dyslexia, which the school was more than happy to do. They found that I didn't have Dyslexia and was refered to an orthoptist who diagnosed SSS. My tint changes every 6-12 months and I can always tell when I've changed, even before I've been tested as my symptoms worsen and I start having to take afternoon naps because I tire so easilt. Up until now my colour has always been greeny-blue, changing only slightly. 16 degrees or so on the colour wheel that is used to test (which just to add, my orthoptist leaves me to get on with and find my own colour because she knows that I can tell exactly what is right for me). Certain colours of light were awful (red, pink, purple, yellow and orange. I was due to play in a school concert, during the dress rehursal they were testing the lightinng, put a red light on the band and I passes out!)

Now to, well, now! 6 months ago my medication was changed to sodium valoprate and by October I was starting to feel the effects of a colour change. I sat down at the machine and fiddled with the dials and found my colour. My orthoptist then took down the settings that I had pit the machine to and asked me to do it again. I did and came back with an almost exact match. SHe then told me that the colour I had chasen was PINK! The reading rate test was greatly increased and I can't rememner the last time I could reads o clearly!

I am now waiting for the lenses to be made. I am un able to wera my greeny-blue glasses as I became so ill thaty I started being sick due to the migraines and found, by fluke, that I was actually better of without them on. I was due to go back to university, went but unfortunately didn't start back after having three seizures in less that 24 hours and then being rather sick. So am back at home, avoiding flourescent lights- eating very little so loosing weight, unable to concentraite, tired, problems with written work (although this may be evodent!)and reading, unalbe to sleep because my brain is unable to switch off, irrityable, muddled, dizzy and having balance problems and all because of the change in thi tent of my glasses!

I know that this is not a typical or straightforward case, but I hope that I have been able to convey how important these lenses have been to me, my health and my education- I left school with 11 A-C GCSEs, 3 A levels and an AS level and am a scholar at one of the top music colleges in the country. Without these lenses, I would have a very miserable existance. The yhave been a God send and I sincerely hope that much more reserach is done into how they help and their uses so that mant more people can benefit from them.

I hope this goes some way to reassuring, convincing or at lease makeng people aware that Scotopic Sensitivity Syndrome is a rael condition and thet the use of tinted lenses extremely benificial in this and other conditions and would advise anyone interested in the subject to look into the research of Proffessor Arnold Wilkins of the University of Essex, who has done much work in this feild of study and is constantly working to increase what is known about the use of tinted lenses and overlays. I hope I have the pleasure of meating him some day, as his research has done much to improve my quality of life.

Rhonda Stone

To those interested in "scotopic sensitivity" or "Irlen syndrome," please note that a growing number of medical sources are FINALLY beginning to acknowledge a link between headaches and eye-strain in some individuals and fluorescent lighting. This is a very small victory, since for years this reality has been denied by the medical community.

Parents -- please imagine what this means for the countless children out there who endure headaches and eye-strain daily as they sit for seven hours a day under classroom fluorescent lights. Frankly, headaches and eye-strain that become chronic often are less distinguishable as pain and more distinguishable as fatigue.

Liz--if you are reading this, please stop claiming that tinted lenses are ineffective and quackery. For some individuals tinted lenses improve comfort and perceptual stability. They can't teach a child to read correctly, but they can help a child who is light sensitive feel more comfortable and relaxed in the presence of light that is bad for them. This helps the reading process.

Sincerely,
Rhonda Stone
Author, The Light Barrier (St. Martin's Press, 2002)
Co-Author, Read Right! Coaching Your Child to Excellence in Reading (McGraw-Hill, 2005)

Tammy Sonnen

Thank you so much for checking in, Miss Stone!! I am just finished working in the Special Education Department of a local High School and am shocked by the number of students that I feel would be helped by simply using colored lenses or overlays! Yet, the school districts where I work simply ignore the possibility that this will work for students who are not autistic! I keep plugging away and trying to open minds, but I often feel it is a losing battle!

Tammy Sonnen

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