Lenny and Irlen Syndrome

As a young child our son loved books, pointing to pictures and copying us saying its word. By three he had a comprehensive vocabulary, being able to name a huge array of shapes, forms and pictures. Of text he showed little interest.

By the end of his first year of school he was having trouble spelling simple words; trouble spelling words from memory such as 'the, what, how, where, this etc.

He had difficulty with spelling and writing and had little sentence comprehension. Still a bright kid. What was frightening to us was the change in attitude. Sullen, brooding, silent, had low self-esteem, and showed severe agitation when asked to explain anything in detail.
Reading Recovery at school followed with some success. Next was Kip McGrath in Waipukurau and it was here Shelley Harrison suggested we place clear plastic sheets of different colours over the text before reading. One by one we tried them until blue was placed over the page. Lenny's interest picked up instantly. Leaning forward he said "hey, the page has stopped moving, the words are still!" No-one will know the exhilarating feeling of hope I had as I watched Lenny lean forward and say those words!

Shelley suggested he be tested for Irlen Syndrome, a form of Dyslexia, which the coloured overlay sheets suggested he may have had. Back then testing was done in Rotorua, so we headed there, had him tested and he was confirmed with Irlen Syndrome. At the test, from many shades of all colours, Lenny picked one that kept the words and text still on the page. These coloured plastic lenses were then cut into a sunglass type frame which Lenny then wore whenever print was involved, classroom and home. Shelley tested Lens reading level in his first lesson at Kip McGrath which resulted in a nil result. At seven years of age, Lenny couldn't read.

We can't express here the frustration, despair and feeling of hopelessness we all went through as we struggled to understand Len's situation. Not knowing why this bright kid couldn't spell or read was unbelievably confusing. Lenny had complained at a young age that the words on the page kept moving and that the white page was too bright to see the text. These comments I passed off as excuses!
Lenny was tested again at eight years old and after a year of wearing Irlen glasses his result was a level of 7.25!! At 9 he tested 8.8. We were in awe of his progress over those two years, but the best was watching his self-esteem and sense of worth return! That was truly the best.

Testing at ten years showed a 9.3 year old level. We realized we had forgotten to retest Lenny at the Diagnostic Clinic at the two year mark as advised, and returning to Rotorua, we discovered a significant color shift in his vision. Over the next 12 months with the new shade, Lenny surpassed his eleven year old level and at 12 has settled in just below his reading age.

We changed the shade again in June 09 as a retest had shown yet another shift. This time the testing was done at the new Irlen Diagnostic Clinic in Hastings and operated by Mark Eagle. Also this year Mark put Lenny through the Cellfield Program, a computer based programme designed to help the mind access memory banks more directly. Right now Lenny is an adequate reader able to tackle documents and books with an amount of confidence. His spelling is below average but we also recognize that his generation, being completely computer literate, has easy access to spell-check.

He is confident in himself knowing he can read, his self esteem is vastly improved, and he completes homework. Both Karen and I know that without identification of Irlen Syndrome, Lenny would have been one of 'those' kids; the dumb kid, the stupid one who can't read, a non-achiever, "could do better if tried" boy, and ultimately a trouble maker and disrupter in class. From there, onwards into the community.

We can't thank enough, Shelley, Mark, Helen for Reading Recovery at Pukehou School, and Mary Cubie in Rotorua for what they have done for our son, and thank you to all others unmentioned who have had influence in Len's life. We saw the path he was on and we love the path he is now on.

So how does this all work?

Lenny hears a spoken word as a picture. His memory bank contains volumes of images and pictures that he recalls when he hears a word to spell. Drawing from memory an image for a word to spell brings the image to mind, but with few letters or only a partial spelling of the word with the picture. I personally hear the word 'cat' as seeing the letters 'c' 'a' 't' in my mind's eye, and can spell it as quick. Lenny hears 'cat' and sees in his mind's eye a picture of a cat, with no or few supporting letters for the image.

In the first two years at school while Lenny struggled to visually pin a word down on the page to memorize and comprehend it, the MoE Curriculum, the 'how to learn' was not installed. He failed to learn 'how to learn'. Added to this is his difficulty in drawing on an image for words like 'the, what, where, there who etc when there is no instant picture in his memory for these words. What is the picture for 'the' and what is the picture for 'apple'; 'why' and 'dog.'?

After Cellfield finished we made hundreds of flashcards and with repetition we have improved his memory bank of non-picture words. Sounds bizarre? It is! We see Lenny around the house now reading the odd article, studying instruction books, and hear him reading words off the TV.

An interesting benefit to his Irlen Syndrome is a natural ability to think outside the square. Lenny does not think mainstream as many Irlen and Dyslexic people don't. This puts them immediately into the square peg, round hole situation going through the Ministry of Education system which caters for mainstream thinking. There is generally an exceptional talent lurking just below the surface of each Dyslexic. Lenny talks money and finances that we hardly hear adults talk and is skilled in the handling of money. He is rapidly becoming an exceptional footballer having had three seasons at Representative level and currently training with an Under Fifteen Grade squad. As at October 2009 he is still twelve!

Watching Lenny happily start school and grow into a sullen and angry seven year old was heart wrenching. In comparison, his younger brother Sam is a perfect student; a model example of the Ministry of Education System.

There is so much not written here. For anyone who can empathize with what they read, we are happy to share with you our experiences with Irlen Syndrome. We understand the frustration of a seeing a bright child go backwards for no apparent reason. Contact us through Shelley Harrison, Kip McGrath in Waipukurau or Mark Eagle at VisionLink, Hastings.

Thanks once again to all who have helped Lenny get life back on track.