2e / vision issues - update

[deminc]

Hi mums, a couple of months ago there was a thread touching on gifted kids who shun reading and vision issues cropped up quite a bit. I was also going through a panicky stage with ds1's vision issues after a very bad fall in school when he couldn't remember how it happened, and days later cried that the words were vanishing from the page.

After two years, he has FINALLY been properly diagnosed and I thought this may be helpful to someone out there. He has chronic Irlen syndrome and besides print distortions, has been experiencing environmental distortions. When he put on his Irlen filters for the first time, he described it as looking through a pair of binoculars - everything looks bigger, sharper, and further away.

He has had them for about one and a half months now, and his headaches have gone away completely. He doesn't get red teary eyes anymore when he reads, and temperamentally, he has become much calmer and relaxed through the day. He also tolerates noise much better now (apparently vision and hearing share the pathways, so with one element removed, there is less overload to cope with). Over the past few weeks, he has also articulated how the things around him look different - others' eyes no longer take on a wavy shape, balls and rolls no longer look rectangular, no more double images when he's tired, people's heads no longer elongate into carrot shape by night time, black stays black instead of turning green etc. He described his earlier years in school as being in camouflage - pretending that he knew what others around him were talking about, or telling him to do, by either imitating the actions, or making jokes out of it. In hindsight, everything fits - his very uneven vision skills profile ranging from 9th percentile to 98th percentile, his difficulty with balance and balls, and his huge change in temperament when print was introduced in preschool and his worsening symptons as the school day got longer and reading requirements increased even though he consistently tested 6/6 vision.  

One mother posted how she worked with special needs kids and Irlen overlays make a great difference to some of the children. Thank you so much, you gave me the confidence to go ahead with the diagnostics even when I was actively discouraged from taking my son to it by a senior optometrist. Interestingly, the overlays however, did NOT help my son at all. He did not want to use them and said they made everything harder to read. We were very discouraged at this point, but then decided to go for a diagnostics anyway because my son felt she did seem to understand what he was going through. During the diagnostics, it was very clear that the different lenses make a huge different to his perception of not just print, but everyday objects around him. According to the diagnostician, the overlays did not work for him because his condition is more chronic, and the overlays do not cut out enough environmental light and also contribute to some reflected light of their own, sufficient to make things harder for him.

We are at a good place now and we are grateful to catch it when he's only 7 though I wish it could have been earlier! So for those of you still looking for an answer, here's another possibility to consider - Irlen syndrome.  

Edited by deminc - 6/3/11 at 1:18am

[Tigerle]

Originally Posted by deminc 

He has had them for about one and a half months now, and his headaches have gone away completely. He doesn't get red teary eyes anymore when he reads, and temperamentally, he has become much calmer and relaxed through the day. He also tolerates noise much better now (apparently vision and hearing share the pathways, so with one element removed, there is less overload to cope with). Over the past few weeks, he has also articulated how the things around him look different - others' eyes no longer take on a wavy shape, balls and rolls no longer look rectangular, no more double images when he's tired, people's heads no longer elongate into carrot shape by night time, black stays black instead of turning green etc. He described his earlier years in school as being in camouflage - pretending that he knew what others around him were talking about, or telling him to do, by either imitating the actions, or making jokes out of it. In hindsight, everything fits - his very uneven vision skills profile ranging from 9th percentile to 98th percentile, his difficulty with balance and balls, and his huge change in temperament when print was introduced in preschool and his worsening symptons as the school day got longer and reading requirements increased even though he consistently tested 6/6 vision.  

Wow, I'm so impressed - both with how your kid's been coping so far in such a weird scary world, and how hard you've worked to get to the bottom of this. there must be so many undiagnosed kids out there struggling, and noone will ever know because no one believes in them strongly enough.

Thank you for sharing your story. It was very inspirational.

[deminc]

Quote:

 there must be so many undiagnosed kids out there struggling, and noone will ever know because no one believes in them strongly enough.

I know! The first senior opthamologist I consulted for jumping words implied he was just an attention-seeking child! He even said there were other kids brought to him by their parents for similar "strange" symptons, and he generally advised them to say nothing to the child, and just observe quietly. If the child stops complaining, the child is fine!

Still I was totally unprepared to learn of the environmental distortions. I cried in the clinic when I heard him describing the room through different filters, realising both how confused he must have been all along, and that this is it, we're finally getting to the heart of the problem.To be honest he wasn't very bothered by the environmental distortions because in his words, he's just so used to them. It was the disappearing words that alarmed him, and the headaches that really bothered him. Plus having to struggle with reading and confusion because what he felt in his hands was different from what he perceived. He says the filters answer all the questions he's had and generally I think he's just extremely relieved to know that he's not stupid.  

I understand there is skepticism with regards to Irlen syndrome, and the information on the Internet is very mixed, and some, out-dated. I hope our first-person account will be useful to another family in a similar situation. I don't know the precise science of it all, but I do know with certainty now that it can make a very big difference to a young child.I truly believe that my child's life course has been changed by this, not just academically, but emotionally and socially.  

[A&A]

I'm so happy to hear your update! 

[deminc]

Thank you!! I AM overjoyed!