Irlen's Syndrome?

DD got her tinted glasses from my local optician. I had to pay for the tests, but the tinted glasses were free (NHS frames).

She had to use the overlays for a couple of weeks to determine which shade of blue was the best for her, then we got the glasses made up.

Sounds like there might be a post code lottery situation here.

Hi Teamcullen,

My son was told not to wear his Irlen lenses all the time as they have no uv filters in them.

He gets one pair of glasses paid for by the Nhs, this is his clear pair. At the moment the sun doesn't really affect his sight out doors, only if he tries to read anything. If he does need to read outside he will then put his coloured lenses on. But because he is long sighted i have to pay to have distance vision put in his Irlen lenses.

I cannot understand why we should have to pay for any of this because,
If our children go to college or uni, they will then be able to claim DSA Disability Study Allowence, this will help towards the cost of their glasses. Because they are only minors they cannot get any help what so ever which i think is unfair, how will they ever get to college or Uni without the help in place that they need.

I have lots of questions for the powers that be, because i feel our children should get as much help as possable at the age they are now. After all they will become our next generation of workers. If they cannot see to fill in an application form or get the help needed for their study at school, how are they going to cope when they have to work.

Im not just fighting for my child, i really do feel for every child out there that has Visual Stress. I can fully understand the difficulties that every parent has when it comes to funding the Lenses that their child/children so obviously need.

I have also found out that this condition is Hereditory (excuse spelling not one of my strong points) I have three children and they could all end up with Visual Stress of one kind or another, the symptoms do differ from child to child. I will carry on fighting for our children.

I would also advise anybody else out there to do the same. Some health authorities and Education authorities do recongnise this syndrome but unfortunatly others do not.

Michelle.

Gosh Fifi! You are very committed in getting the right help. Well done. I sort of accepted that I wasnt going to get any help and dipped DSs savings to get his assessment and tints.

Why do you have to pay for his perscription for glasses? DS gets hs normal perscription for his glasses and then it costs £90 to get them tinted by the Irlen centre. Also Irlen reccommend that you wear your tints all of the time as you are likely to have visual stress in every day life too. For example, He doesnt like sunny days as the glare from the sun distorts things and gives him headaches. One sunny day he asked me why all the trees were pink

Hi All,

My son was sent home from school with a letter stating that he needed to use a coloured overlay to help with his reading.
I went and spoke to my sons optician as he already wore glasses.

My sons optician was able to do a colourimetre test at the cost of £55.00 to determine the perfect colour of overlay for my son.

After approx 13 weeks and only when it was proven that the overlay was helping him, he was then given another Colourimetre test at the cost of another £55.00. This second test was to determine the colour of the lenses he would need in his glasses. I currently have to pay for his glasses myself as my son has to have 2 pairs one clear glasses for everyday use and a second coloured pair for reading and writing. At the moment it cost £80.00 to have the lenses tinted and a further £55.00 to have my sons distance vision (serverly long sighted) applied to his Irlen lenses.

In the area where i live it is not recognised as a disability at all. I am currently talking to the nhs to try to get my sons Irlen glasses paid for by them. They have informed me that they might use my son as a test case, which i hope they do.

I have also got in touch with my local MP, just to see if she can do anything to help with the situation. I have been told that my MP has written to the Sec of State for Health and also that she has written to the Directer of the Nhs Havering on my behalf. I am currently waiting to find out if any changes can be made.

Education needs for my son are different to most children, i have been in touch with the Visual Impairment Cordinator for Havering and she is currently cordinating with my sons Secondry School to try to get a lesson/learning plan in place for when he starts there in September.

I was told not to refer to it as Meares Irlene Syndrome, because it will automaticly be thought as Visual Dyslexia which it is not. It is to be referred to as Visual Stress or Scotopic Sensitivity Syndrome.

I have yet to find out if i can claim Dla for my son, but i feel as though i am finally getting somewhere with the problem that he has.

I tried to talk to the head of my sons new secondry school, but because he had no idea what i was talking about i kept getting pushed from person to person, so in the end i gave up with the school and turned to the people mentioned above for help instead.

I am waiting to hear about the provisions for my sons education.

He is leaving year 6 and is level 3 reading and writing.

Anybody trying to get help for their child/ children with this Syndrome will have to be strong and be ready to fight all the way. Don't give up, i haven't.

Michelle.

MMM if you are near London you could try the City University optometry clinic. They test for Irlens
see here

I don't know how much it costs as some of their clinics are free on the NHS. I am planning to take DS1 there as he is 6 and has suspected dyslexia. I also find it easier to read text on a computer screen that is not black and white (I use dark green on light green) as the high level of contrast seems to make the letters less clear.

Hi MathsMadMummy. My DS2 has Irlen's syndrome and has tinted glasses. He also has Dyslexia and these are two seperate conditions. When DS is trying to read without his tinted glasses the words seem to move about, go into the line above or even seem to move right off the page. Its hard for him to read with all the movement of text. This gives him headaches and he gets distracted and finds it hard to organise himself and his work.

You can do a quick test by buying a selection of coloured overlays here and placing over a page of text and asking DSD if there is any difference in the way the text reacts.
She will probably decide that one is better than the others and she can then use it to cover the page when she is reading. If you find that helps, then it might be worth getting in touch with the Irlen Centre.

Some optitians have a similar test which does the same thing and you might find one of them closer to home. It might also be a bit cheaper than Irlen.

If you have any more questions please ask.