Ian Jordan/Irlen Syndrome ... help and advice please ...

[frazzledbutcalm]

I'll try to be brief. Dd1 and Ds2 both have visual problems. Dd1 is now 14 and we've only just learned the extent of her problems. Basically everything she sees in a book moves constantly ... she's blagged her way through school so far and achieved VERY well. Ds2 is 9 and his words are 'puffy'. I thought they both had Irlen Syndrome. However, I took them to see Ian Jordan and they've both been diagnosed with sensory processing issues. Ds is getting blue lens glasses, dd is getting glasses with 1 green lens and 1 purple! She's really bad, really complex he said. While I'm very happy with the care/treatment etc, I can't help feeling that he's diagnosed what he deals in .. If I'd gone to the Irlen Centre they'd have diagnosed Irlens. Either way, they would receive coloured lens glasses. I'm feeling a tad confused/unsure though. Is there anywhere else I can get opinions from or should I be getting them referred to anyone through the GP?
TIA, hope this all makes sense.

I think Irlens is the same thing, yes. The difference with their lenses at Ian Jordans practise was just phenomenal! I just want to be sure I'm not missing something I should be doing.

Have to say Ian Jordan is fab!! I have one who has a pink set of glasses as well as dark blue and another who has a set of dark blue and another set with one red, one clear!
I always feel have we achieved something when we leave Jordan's, it's all so bizarre. He's one special guy! According to him even the person with perfect eyesight will have a weakness somewhere, he guessed rightly at mine being oncoming traffic in the dark, he's really uncanny.

I agree dev , he was fantastic. I just wonder if they'd get diagnosed with something wherever they go? As he's said mine have sensory processing disorder (I agree we all have to an extent), should the GP be informed, will they refer to paeds etc for their own testing? Or do I leave it to be yet another issue to sort out on my own, left to my own devices? I feel it's something that should be on their medical records. Did you see GP also?

Have you seen a behavioural optometrist? And occupational therapists can check visual perception. I had a thread on here a while ago asking for advice.

So far I have been to see Ian and in early stages with o/t. I was not impressed with Ian, came away feeling that he prescribed coloured lenses because that is what he does. not because ds needs them. But I am sure that he does help others in an amazing way.

I also thought the fact Ian was reluctant to put his findings in writing was not good.

sorry should have said, I am seeing o/t for SPD.

It is not easy finding the right person for help with these things. I totally understand how you are feeling. Good luck.

Ah tacal ... funny you should say that ... he wouldn't write a report for me when I asked. I've emailed him to ask if I should inform our GP of the condition but he said there's no point .. although he said he is happy to speak to the GP
From what I understand, Ian is a behavioural optometrist. I have to admit, as my dc are old enough (9 and 14), they were able to say/tell what was happening and the results were truly amazing! Both have visual problems when reading and both are immediately corrected by the coloured lenses. I just feel quite torn... I feel like he's diagnosed what he deals in, I know the Irlen Centre would diagnose Irlens Syndrome. So how do we know what is really right?

I too have been to see Ian, as has ds, both of us now have coloured glasses but for slightly different reasons (I am dyslexic ds has sensory & tracking issues) the results were amazing especially in ds. We haven't had an issue getting ds's results in writing or a report done for school, for us he has been fab

Did you have to pay for your report marsh ?

I thought Ian was not a behavioural optometrist.

Do you feel you need further tests/diagnosis if the problem is corrected by the lenses?

No not really tacal ... I guess just reassurance. I just find it odd that we'd have a different diagnosis if we'd gone to the Irlen Centre. But at the same time, I realise that Irlens and sensory processing disorder are probably the same thing. It's just strange to think we have SPD just because we saw someone who specialises in SPD, we'd have a dx of Irlens if we'd gone to someone who specialises in Irlens. Does that make sense? I'm not sure I'm explaining myself properly.

Yes, what you say makes sense.

I don't think Ian would be the right person to give you the official spd diagnosis. Maybe you should ask your GP and see what they say. My ds has his sensory issues mentioned in the report I got with his autism diagnosis.

maybe you should do some reading on spd see if you think that diagnosis could be correct.

frazzled yes i did, I only really needed it as ex-mil doubts any dx ds has (whole different story) but Ian has done updates as and when needed.

ds got his spd dx from a private ot but it was Ian that recommended we go down that route

We got a letter for school purposes the need for coloured lens but in the letter Ian States that school can pay for a in depth report. I know he's went to lots of tribunals for parents so does stand by what he says. Me personally wouldn't of believed any of what he does until I was at a conference and the only person with the eye problem he wanted was my mam! She reluctantly got up, very skeptical herself, but ended up saying how good it was and if she could afford etc etc

I'm not sceptical, the results for my dc with these glasses are just phenomenal! It can't be denied. I just don't think I'm comfortable with Ian dx a problem and the GP not knowing or having anything to do with it. But, I went to the GP with dc problems and they said they couldn't do anything re testing as it's an educational problem! I'm going back to GP to let them know the findings from Ian, and the fantastic results the glasses made, and will ask for more 'official' testing.

I'm not saying your skeptical but that my mam and I were, if she hadn't of got up for the testing in the conference we would never of thought about seeing him. I think he can just come across quirky, maybe the wrong word, but he does tend to be somewhat a magician. He told DD if she wore her glasses for a year she wouldn't need the prescription in her lens. She didn't do as said !!

hi frazzled it would be great if you could let us know how you get on. I would be really interested to know who is the right person to give you a diagnosis.

The o/t gave me a sensory check list to complete about ds for a sensory workshop I will be going to. It does have a section asking about visual behaviours. I will hopefully find out more at the workshop.

No probs, I'll keep posting. I had no idea sensory issues were the problem. To me dd just had problems with words moving all over her pages, meaning she had to read every line 5 or 6 times before it made sense, because the words never stayed still. Ds words just go puffy making it difficult for him. When Ian did his tests and questions LOTS of things made sense! Had it not been for their visual problems I wouldn't have realised anything of their other issues.so these would have remained unnoticed and not corrected/helped.
dev .. I know you didn't mean I was sceptical, but your words made me think it might have sounded that way. Magician is the right word for him

I feel u did the right thing . Unfortunately, the costs of examination and tinted glasses for Irlen are the most important issue. Especially if there are changes in eyesight over the education years (and beyond) further prescriptions for new tinted glasses could be be needed. Tinted lenses are costly. GPs have varying policies and NHS has priorities what to pay according to condition. We used the Optometrist Institute in London. V good.

Regards the costs of examination and glasses for children, there is an e-petition "Funding for Precision Tinted Lenses for Children suffering Visual Stress (Meares Irlen Syndrome)” and perhaps you might wish to see it here

Have shared the petition on my Facebook page. Very important!!

Myself and dh have signed the petition. I don't have facebook, but will see if my mam and sister will find this on facebook.

Well our glasses have arrived! Ds are blue lenses .. they work for his visual problem, his words now don't go 'puffy' which is why we got them. Also, he hears better with them and things taste different with them and touch is softer to him when wearing them. Dd are 1 green lens, 1 purple lens. We were worried about how she'd look but they're quite fab! They look just like 3d glasses from yesteryear She LOVES them, is not shy/self conscious about wearing them at school. We're so proud of her. Without them her words move all over the page (a bit like crawling ants) but with the glasses they stay still, just like we see them. It's just amazing what colour can do!
We've been to the GP also. He's going to ring Mr Jordan to discuss things, then get back to me wrt any testing on NHS for things that may be lurking.

That's great frazzle it sounds like Ian knows what he is doing. You must be really happy. After reading all the positive comments about Ian on this thread, I think I will take my ds back to Ian when he is a bit older.

It is great that your gp has agreed to speak to Ian.