Irlen's Syndrome?

(33 Posts)
MathsMadMummy Wed 14-Jul-10 08:28:36

having seen this mentioned on another thread, I looked at a couple of websites and I'm wondering if my DSD (12) has it.

she's had a few tests for dyslexia over the years, some say yes, some say no. she's quite clever, but her reading/spelling are pretty poor and none of the traditional help has worked (extra phonics training etc) has worked at all. she still gets a lot of letters back to front, and gets headaches etc.

obviously I could be reading too much into it, but it does make sense as I've always wondered if her dyslexia was actually something more 'physical' IYSWIM. if it is this, she could get the special lenses (she wears glasses already) or the coloured filters or whatever.

what do I do though? it's hard to really know her day-to-day symptoms as she lives with her mum and we only see her every couple of weeks (hoping for more in summer). if we think it's worth checking out properly, how do we go about it? I'm wary of mentioning it to her/her mum needlessly in case it upsets her (or her mum thinks we're interfering hmm)

any advice/experience gratefully received!

teamcullen Wed 14-Jul-10 22:46:19

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.

MathsMadMummy Thu 15-Jul-10 13:52:07

thanks so much for your reply - I think it was you who mentioned Irlen's on the other thread. I'll ask DH about getting some overlays and giving it a go. DSD hasn't overtly said anything about things 'moving around' but we'll ask her. how do you actually get a diagnosis? would she get financial help with tinted lenses etc? or is it one of those conditions where GPs are a bit hmm

ChazsBarmyArmy Fri 16-Jul-10 12:26:24

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.

fifi4560 Fri 16-Jul-10 17:45:07

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.

teamcullen Sat 17-Jul-10 11:33:56

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 confused

fifi4560 Sat 17-Jul-10 12:00:37

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.

3littlefrogs Sat 17-Jul-10 12:15:20

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.

fifi4560 Sat 17-Jul-10 12:34:32

Hi 3littlefrogs,

There is most certainly a postcode lottery.

The authority that i live in do not even recongnise dyslexia, they have stated that the reading program they have in place is the best for children with visual problems.

The reading program hasn't done a lot for my son or his friend who is going into year 9 in Sept and is still only a level 4 reading.
Myself and my son's friends mother have now joined forces to get something done in this area. We have both said "If we could afford to move we would".
My son's friend also has Visual Stress, which what we have to call it in this area as Meares Irlen Syndrome is classed as visual dyslexia and by calling it this will get us nowhere at all.

teamcullen Sat 17-Jul-10 12:56:22

fifi I agree about the DSA. I live in a very deprived area, Ive never seen another child in tinted glasses although I have heard quite a few who use overlays.

The overlays didnt really work for DS in the sense that only a small part of his learning was reading from a page. His teacher promised blue paper but he never was given it. He would leave the overlay in his tray and the smartboard had a white background. DS likes to work in a darkend room but he had to deal with the classroom strip lights. Of course he is not the only child in his class and I cant expect the whole class to fit around DS.

He has had tints since January. I think the teacher had quite a shock at how much they help DS. She is now fully converted and can point out the days thay DS has forgotten his Tints because his work is of a lower standard and his concentration wavers very quickly.

On what grounds can you apply for DLA? Ive never thorght about this before but he does need a lot of support especially as he has dyslexia in a few areas as well as Irlen's.

fifi4560 Sat 17-Jul-10 13:37:17

Hi Teamcullen

I was told when asking for any help, i would need to refer to Irlen's as Scotopic Sensitivity Syndrome or Visual Stress. I have been looking at the Dla web site but i can only find reference to children who are blind.

But i plan to apply anyway, just to see what i can achieve. Hopefully i will be able to get something, because when paying for these lenses every little bit helps.
I have spoken to the Dla on the phone and called it Meares Irlen Syndrome, i was told there wasn't anything they could do to help my son. They wouldn't send me out an application form on these grounds, so i will call it Visual Stress next time and see where that gets me.

There is talk of Audio books etc for my son,there is also talk of a scriber for my son in class and for him to be allowed to type instead of write, because of the single lettering on a key board it is easier for him to read.
I am hopefull that the school agree to these being put into place. I just have to wait and see, if you get in touch with your local education authority for disabled children they should be able to put you in touch with your local Visual Impairment Cordinator, thats the route that i had to follow.
The cordinator has been to meet my son and is currently talking to his new secondery school, to fight for the help that my son needs in school.

My son's Visual Stress wasn't discovered until Nov 2009 and he was 10 years at the time.

Since Nov 2009 he has had 2 pairs of Irlen lenses because his distance vision has changed. My son found the overlays clumsy and awkward to use. I also asked for coloured paper for my son, which he never got given. Although they did change the background colour of the whiteboard to yellow for him, which helped a little bit. My son also has problems with a computer screen, the background colour for that has to be Lime Green (double) for him to be able to read it. I had to send a program into school for him so that could be changed, but since having his double navy blue lenses he hasn't complained about these things.

I have also been told that the worst thing i can do is force my son to read, as the stress of trying to read will make the synptons worse, the more stress he feels the more stress the eyes get and the more of a waterfall effect he gets when reading.
Heving said that i do get my son to read to me, but only as much as he feels he can manage, we stop when he wants to it could be 1 page or 21 i leave it up to him to decide.

MathsMadMummy Sun 18-Jul-10 07:47:19

wow thank you for all the info. off out soon so we'll read them properly later.

will ask DSD today if she'd like to test some coloured overlay things, and go from there.

shadowcrest Mon 27-Sep-10 17:31:52

Hello,

I am trying to find out any information that I can about Irlens Syndrome.

My son is now 12 and has gone into highschool.

He was tested for dyslexia (at his primary school)and dysprexia(at the childrens hospital) when he was in year 3.

The hospital told us that he did have dysprexia.

I was told by his primary school that he was dyslexic and that he would need to use a coloured overlay for his work. He has used it for the last 4 and half years.

Before school got out last school year, I called his highschool to make sure the help that he would need was set up for him when starting back to school.

Well it wasnt, in fact they didnt even have the records from his primary school about any of his learning disabilities.

Now the primary school is saying thatafter 4 years, no he wasnt tested for dyslexia that he was tested for Irlens syndrome.

I am so confused and frustrated. And trying to get the paperwork on him being tested for this is impossible!!

I have been back and forth between his primary school and highschool to get him the proper help that he needs. And it just seems to be the "run around" game.

Everything I have read on Irlens syndrome seems to be spot on with my son.

So now I am trying to find out how to get him properly tested so he can get glasses to wear. Because I was told since he is older the colours have probably changed. And the coloured overlay for reading will probably not be the same for the lenses in the glasses.

If anyone can help on advise or places I could go to, to get help would be great.

Thanks so much

fifi4560 Sun 31-Oct-10 12:26:39

Hi Shadowcrest,

You need to go to your optician.
They should be able to tell you where you can get your son tested. This is what i did, i was just lucky that the optician i used for my son intially also tested for Meares Irlene Syndrome.

My son also has severe long sightedness.

I can tell you for sure as i live in Havering that there is only one optician in this area. I can also tell you that there is only one in the Brentwood area aswell.

The colorimetre test as it is called for Irlene Syndrome is not done on the NHS in all areas, i cannot tell which areas do or do not recognise this syndrome.

I have to pay £80.00 to have my son retested every year. In a lot of areas you can only get these glasses by private perscription. I have recently managed to get some help off of Havering PCT for help towards the cost of my sons lenses, they have issued a £55.00 repair voucher for all of the children in Havering towards the cost.

Some campaigners for Irlene are trying to set up an appointment with the powers that be in Parliment to get more help for these children. The main argument is that the Health Authoritity feel it is a learning proplem and the Education Authoritity feel it is an Health issue.

I had to research this myself as at the time that my son was diagnosed as having Irlene's there wasn't anybody that could give me any information at all apart from my son's optician. I learnt what i know today by using the internet.

I have also had the same fight to get help for my son in Secondry school, but the school my son attends are listening to me and are willing to have a lady called Christine Fitzmaurice go into the school to educate the teachers on Meares Irlene and the way it effects the learning ability of the children affected by it. Christine is one the campagners mentioned above. She has been trying to get this recognised for the past twenty years. Christine works alongside Professor Bruce Evans and Arnold Wilkins who have both ran studies into Meares Irlene Syndrome.

The colours for the lenses are different to the overlay colours because of the distance that you are away from the page. Also the colours of the lenses change at time aswell, i think this is because the eye gets used to the colour being used, hence the need for testing on a yearly basis. My son has just been changed from Navy blue lenses to Pink.

I have no idea what area you are in so unfortunatly i cannot advise as to where you can get your son tested for his glasses, but the glasses are a lot easier for the children to use. As you can write with your glasses on and you cannot write through an overlay.

Hope this has helped you, all i can really say to you is don't give up, keep on and on and eventually someone somewhere will listen to you. I had to keep on and on then one day i just happened to speak to the right person.

Regards

Michelle.

fifi4560 Thu 29-Sep-11 18:32:29

Hi

I just wanted to let everybody know, that i have finally managed to get a Statement of Educational Needs for my son. He has Meares Irlene Syndrome. It took me about a year in all, but i got there in the end. On his Statement it reads that he suffers with Meares Irene Syndrome and Visual Stress.

His Secondery school has been fantastic in the fact that they have bought computer programs in to help with his Reading and Maths. I am very pleased to say that the other children within the school have access to these programs aswell.

But my fight for him doesn't stop there. I have just applied for DLA for him as it has been proven that the MIS affects his learning ability. I will keep you all informed as to how his claim goes, but it could take up to six weeks before i know if he is entitled to it or not.

As i have said in my previous postings one step at a time thats all any of us can take.

Chelle

fifi4560 Sat 12-Nov-11 10:50:07

Hi All,

GOOD NEWS!!!!!

My son has been awarded the Middle Rate of DLA because of his MIS.
I wanted to let everybody know, because if i can get it for my son to help towards the cost of his lenses then anybody can get it for their children also.

Regards and best of luck to all.

Chelle.

dolfrog Sun 13-Nov-11 22:39:02
fifi4560 Fri 25-Nov-11 06:01:00

I have started an e-petition to try to get the lenses funded and to also get Visual Stress (Meares-Irlen Syndrome) recognition by the Education Authority.
I need 100,000 signatures before Parliament will even consider discussing this.
epetitions.direct.gov.uk/petitions/23142
Please go to the above link to place your vote.
Our children need help and they need it now.
Thank you to everybody that does vote.

Nia59 Wed 14-Dec-11 18:04:56

Hi Fifi, I would like a chat with you as I have also been tonight to speak to our Assembly Member in North Wales, he suggested I find someone who has already started investigating difficulties faced with Irlen's. He suggests that we could meet and strengthen our fight in Government, obviously he would be in the Welsh Assembly but could possibly link up to the MP you have contacted if he is supportive?

janejaney Tue 07-Feb-12 14:02:03

Hello everyone as you can see im new to this site,and would like to chat to people whos children have been diagnosed with meares irlen syndrome as my 2 youngest children have just been screened by a charity for irlen syndrome and confirmed that they both have it. there is a clinic they will have to go to but need £80 pounds then from there however much the lenses will cost. I have done a bit of searching but would love to hear from other stressed parents on this subject.

kathy79 Mon 16-Jul-12 21:22:08

Hi
my son was diagnosed with Mearles irlen syndrome in November 2011 aged 10 . His writing was terrible due to dyspraxia and hypermobilty in his fingers. His reading was years behind his peers, debilitating headaches, suffered low self esteem, anxiety issues and eventually saw cambs. The school were a joke and i had to resort to home eduacting so all my sons problems could be diagnosed and i could work on building his self esteem and confidence back up and eventually getting back to the learning, I have spent at least £2000 on resources to help my son at home as we are not entitled to any financial help for irlen syndrome apparently. He is a bright lad with an apptitude for science and is a visual learner, the lenses have made a difference to his life and wellbeing although he will need the use of a ta due to the reading and writing element.He is now asking to return to school as he has made great progress, but i am having a hell of a game trying to get the LEA to agree the right provision for him without a statement. They even failed to disclose the nature of his sen needs to a local primary school to secure him a place. The only reason i found out was because i had a nice chat to headteacher before we agreed my son would go there.
Any advice welcomed

LynetteScavo England Mon 16-Jul-12 21:55:18

Interesting thread!

DS2 has coloured lenses, and uses a coloured overlay, as prescribed by a behavioral optometrist. I'd taken on the advise of some fantastic MNetters, as his reading was poor and I suspected suspected he was dyslexic. (He was assessed at school recently and apparently isn't. smile) The lenses and overlays have really helped him. Does this automatically mean he has Meares-Irlen Syndrome? confused

Sorry to hijack!

kathy79 Tue 17-Jul-12 07:52:26

Hi,
It dosnt automatically mean he has meares irlen syndrome however it might be worth having him assessed by a irlen specialist, i found one on the irlen.co.uk site and travelled to cheltnham.If i were you i would read all the material on the site and see how much of it allpies to your child.
The last school my son was at used coloured paper and a dark green overlay which helped. But he has made remarkable progress since been diagnosed with irlen syndrome and having the irlen lenses. His writing is ledgible and improving all the time, he can now read for 20 mins, his debilitating headaches are a thing of the past, hes learnt to ride his bike on his own( big achievement seen as hes been trying for years and hes now 10 years old) the funny thing is when the irlen specialist was trying the different lenses on him ,Once the right combination was found my son remarked the world was clear and not wonky and was this what everything looked like for everyone else. So all that time it not only affected him with headaches, extreme reading problems, handwriting, co-ordination memory and cognition but the world was also distorted.But to him he thought everyone saw the world like this. Its remarkable to think it can affect our children like this. Now i had to pay £210 for the assesment, £100 for the lenses tinting and £40 in vat totalling £350. but i can honestly say that it is worth every penny i paid and although costly you do get an accurate report sent to you explaining all the difficulties your child has, it gives recomendations and really hits the nail on the head. Totally proffessional and they are lovely people. I was totally fed up with being fobbed off by the school and seeing my son struggle so hard with no real help or explanation while the school kept passing the book. Although the irlen lenses work its not a miricle cure and your child will always need them, and a six month intail check and then yearly after that.
Hope this helps you in whatever decision you choose to make

23balloons Tue 17-Jul-12 13:31:54

Thank you so much for this thread, I will sign the petition.

I have been reading about a lot about this, my son has vision problems and dyslexia. I paid a private behavoural optometrist £330 for a test last year and he confirmed my son had vision problems but refused to give me a report. I have since contacted the British Association of Behavioural Optometrists and made a complaint about this practitioner and they have contated him and told him he will have to produce a report.

Since then I have paid for a private diagnostic assessment and found out my son is dyslexic too. I went to the doctors to ask for another vision test with the NHS and they said they would refer me if an optician recommended it, so I took him to their suggested optician (he doesn't need glasses for sight) and the optician wrote to the doctors suggesting referral. We have a test scheduled for the end of August at the local hospital. I think he has IMS as he has responded to coloured overlays. His school have done nothing to help him and have criticised all of his weaknesses (due to dyslexia) in his end of year report.

I am hoping his secondary might help more but I am not convinced. Fifi4560 well done for all you have achieved for your son and for not giving up!! I hope I manage to get my son some recognition for his difficulties before it's too late.

kathy79 Tue 17-Jul-12 13:57:15

Good news my side, My son asked to be able to go back to school and after i found out my LEA officer rushed to secure him a place without disclosing any of his special needs and the extra provision that would be needed.
I have since had 2 conversations with him explaining that this was not good enough and i will not place my child in a school where there is little to no provision for him and undo all the progress he has made.
My LEA officer seems to be under the illusion that because my son wears the irlen lenses that he will miraculosly recover his reading ability his writing will improve vastly and all will be right with the world i.e no extra provision needed.
However i have just got him to agree to start the statmenting process even though i home eduacte, now i am under no illusion that this will be a lengthy drawn out process and i may have a fight on my hands. But i think my son should have the right to be eduacted in a suitable and happy setting with the help he needs.He has dreams and aspirations of what he wants to be when hes an adult, who are they to tell him he wont get there?
So anyway ive made some progress and theres plenty of fight left in me yet!I will let you all know of developments
Good luck everyone and i hope you all find a way to help your special children like i have been able to help mine.

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