Got a diagnosis, Visual Processing Disorder

[Cindy in CA]

Scotopic Sensitivity, Irlen Syndrome ( whatever you want to call it.) Both my son's have it which is no surprise. Both are going to get fitted with Irlen lenses. We did Nick's screening today. This is hereditary and the Dr. said that they can skip testing me .......it is incredibly obvious where they inherited it from.

We have suspected this for a couple years probably but nick wanted to try college and see how he would do. Towards the end of the first semester he said he was ready to go to Irlen for testing. Ben was on board after Nick was diagnosed and he was diagnosed today. Glad to be getting help and praying the Irlen lenses will make a huge difference for both of them.

Very eye opening for all of us as it answers a lot of my learning issues as well. Reading, driving, filling out forms etc. are very difficult for me and I had no idea it was because of visual processing.

Anyhow, I share in hopes to help others. So if you have questions, I would be happy to answer them. This is where we started. www.irlen.com

[Laura F]

Kendra and her boys both wear Irlen glasses. I'm sure she'd love to chat with you, Cindy.

[Cindy in CA]

Thanks Laura, that is what I thought.

[Kendra AU]

Yes, we do all have it. We've been wearing our visual spectral filters for 4 years now, except the youngest who was only diagnosed last year. Your boys, if you have a written report back from your specialist, are now eligible for things like Learning Ally {.org}. You'll just need to send them copies of the letters {pictures will do.} It's been an absolute life saver for my eldest who is on the severe end of the spectrum, as in no filters on & this kid will totally miss the doorway. LA has lots of textbooks, novels, etc. One paid subscription can host up to 5 people I believe it is. If you're a new subscriber I'd sign up through HomeschoolbuyersCo-Op because you'll get your first year much cheaper than normal price.

Between Learning Ally & Audible my eldest works with all audio books for school except with math & writing. We use video based learning for him in those areas so he can remain an independent learner. He loves that & so do we, obviously.

Isn't it great to know you're not nutty & all those "weird things" are explainable? After getting our diagnoses several years ago it put a lot of "odd" things in place for both myself & my eldest. There are still things we can't handle, like our local grocery shop just lowered the shelves which means the fluorescent lighting is harsher now & it's a huge trigger for me, so if I'm not quick in the shop I get quite anxious & realised I need to wear a ball cap in there as well, & I still don't do well under hospital lighting either. They aren't issues for my son because he can't go out & about without his glasses & a ball cap on, but we've finally realised why he's such an amazing goalie. He's only ever seen a bright blinding object flying at his face making it much easier to block. Attempting to "fake it" never phased him because those black & white soccer balls or white hockey balls are just blinding lights to him. It's one aspect in which he feels his Irlen/SSS/VPD isn't so bad.


ETA: When you say your Irlen Specialist didn't have to test you do you mean that he was able to diagnose you based on the information you provided? I'm curious, because it can be inherited from mother or father. I actually think my father had which would explain many of his vision issues & other health issues which all stem from Irlen, but alas he can't be tested..

[Robin in Colorado]

Kendra is the queen - we are thankful for her experience - but we've got it here too!

[Kendra AU]

Just another quick note, there are a few FB Groups dedicated to Irlen. The one we are a part of is based out of the UK, but there are several Aussies in it as well. It's mostly a place to encourage each other, ask for help, etc. Many of the problems people in the group deal with aren't ones we an relate to at this time, as many people seem to struggle with the schools accepting the diagnosis in order to get aides needed.

There is also an Irlen Week every October, some Specialist are pretty gung-ho to be a part & others just do their normal stuff. There's a FB Group dedicated to that as well which runs all year long. Again, it's used to help new people find help & to support each other along the way..

While I'm posing {& able to think straight before this day gets whackier} if you use MUS you can obtain the books in PDF format to print on your child's special paper. I contacted MUS about getting books printed differently for my kids as one needs a blue shade & one needs a grey shade. They told me that as long as I can send them {digitally} proof of my child's diagnosed problem they can provide me with a PDF to run the copies off. I haven't taken them up on that offer as I had all the books up through Pre Algebra {I actually thought I had more & got the shock of my life when I went to pull Algebra off the shelf for my eldest..} & each summer I've just removed the spines of the books & copied the pages for my child.

We LOVE our current printer which allows me to throw a workbook like this on it, tell it to print both sides & I can walk away. It's saved me hours of time where I use to have to manually do the double sided stuff. Keep in mind, my severe SSS/VPD boy was bad enough off that I use to have to copy the books he read too. I'd get kindle books, strip the lock off so I could turn it into a pdf, then I had to cut & paste the entire book into a word document to fix the formatting & put punctation back in, & then print it out & bind it up for my kid to read. A serious act of love, because there's no other reason I'd go to such insane lengths.

The day he was able to read on normal book paper without getting glare or "crossed wire" issues I actually cried. Then I went mad & bought him a TON of books. Just thinking about it makes me a little teary eyed.. Needless to say there's a stack of books under the tree in the other room just waiting for him.


Ahh, I could seriously go on for hours about SSS/VPD, but I wont.

[Cindy in CA]

Kendra,

We already knew we all had major fluorescent light sensitivities and we were pretty sure before walking in the door we would all test positive. Nick tested 2 weeks ago and yesterday we went back to do the color dianostic part. We decided to test Ben yesterday too. While testing Ben yesterday and discussing my symptoms with me he said we could skip testing me. Driving at night is pure torture for me. When The boys and I talked about how difficult it is for me at night to change lanes and how the headlights blind me and how we already bought Irlen overlays etc. it was obvious to him. They know Dr. Irlen personally and have been involved since 1990 I believe. We went due to the light issues and knew here were some reading issues but did not realize the extent of how much my son's have compensated all these years. In spite of having VPD they ace their state testing and even get perfect scores. They always require extra time though which was always given to us. Yes, this is an official diagnosis and Nick and I will talk to the excellent DSS at his college as soon as they open back up. His color is a light blue and I will get paper. Ben seems to like dark grey but we still need to test him after we get glasses for him. Before even getting disagnosed he put a grey overlay on his phone and tablet.

I will look into Learning Ally. Thanks!

We were in fluorescent lighting today and the glare is driving me batty on my tablet. So I will go for now. Oh, unfortunately I don't have Facebook.

Ben's IEW teacher and I are friends and we are going to meet for lunch next week to discuss and his Biology teacher has kept the lights off in the classroom thus far. So kind of him.

Bye for now.

[Cindy in CA]

Kendra is the queen - we are thankful for her experience - but we've got it here too!

Do you all have it? When did you find out?

[Cindy in CA]

We went visor and hat shopping last night in a fluorescent lit store. I put on a visor to try and had instant relief. I ended up wearing it the whole time in the store. It made a huge difference. I still was eager to get out of there but shopping was tolerable.I am hoping and praying for relief with night driving. I am so sick of the lights in my eyes and having such issues with simply driving, changing lanes, merging etc are all soooo difficult for me and I get scared and anxious. I avoid it as much as possible. When I think back of my history of car accidents and parking lot mishaps, they may all be attributed to VPD. Gotta get ready for church. Thanks for listening!

[Kendra AU]

Yep, night driving is a huge game changer for me now. I came home with high stress & a headache on Christmas Eve because someone removed my night Irlens from the car! I have no idea who on earth did that because it's sooooo light here right now {past 9pm it's still light} so I haven't needed them since our get-away a couple of weeks ago. So between not having those on, & our last stop was SUPER flashy lights I was a mess for a little bit after we got home.

Our house is likely hard on visitors because we don't use lights a lot at night, & rarely during the day. We have a hall lamp on during the night, a couple of night lights & unless someone enters a room & needs it nothing else is on. Our eldest can't cope with the lights on, & we have a few lights that are pretty hard on myself as well. The two of us also have any electric device we used set to the lowest brightness allowed. However, if you use Chrome you can now get an Irlen Filter specifically for that, mind you if you're a Windows user you won't need it because you can change screen colours like a personal overlay. If you're a Mac family you have to buy the app which is $64 I think.

My kids swim & our eldest was having a hard time mastering something with his swim coach, his goggles broke & we bought new ones that were similiar in shade to his lenses at that time. The difference was amazing. Kinda crazy we hadn't put two & two together sooner. Now that they have the Irlen Clings out we wanted to purchase some for goggles, & a couple of i-devices, but the shipping to get them here is kinda crazy.

Not sure if it's been recommended to you or not, but our specialist also highly urged us to get DragonSpeak for our boy. He can just talk his papers into the computer & it types everything for him. However, he has to tell it where to put punctuation & all that. He's not a HUGE fan of it because you do have to teach the programme. I got it working well for myself by simply reading a book to the computer. Yep, another way I got the kids books on their coloured paper for a while. My boy prefers to type of DragonSpeak, but we'll see if he remains that way with the writing course he'll be using this year. I did help him set up a template in his document programme so that the background is his specific colour making it super easy on his eyes, but we really just need to buy the overlay app for all our devices.

The really hard part for my boy with hats in shops is that his glasses are REALLY dark. He started out with a greenish hue {4 layers}, move to purple {same family; 4 hues}, & then moved to a grey {4 hues; still same family} & this made it look like he was wearing dark sunglasses & a hat in the shop. I know in the UK they get cards so if asked to remove glasses &/or hat in shops they can show why they are wearing them. We don't get them here all though our specialist gives us Irlen Bracelets, more support & awareness though. I need to order him a new alert bracelet or necklace for his asthma & dairy allergy so I think we'll just put the irlen right on, but refer to it as with either it's SSS or VPD name. It's funny how people stop to listen when they hear it referred to under those names, but scoff when they hear it as Irlen.

We had a long chat with our specialist about that, or I should say I did.. my boy just talks hockey with her. She's tried to urge Dr Irlen to call it by it's scientific name vs naming it after herself, but Dr Irlen isn't too interested in that. The problem is that a lot of people struggle to get the help in schools when they use the term Irlen vs VPD or SSS. Kinda sad really because regardless of what it's called it IS a problem.

Have you read the book Reading By Color? It was an eye opening read. We read it before going to our first specialist merely because she was in the USA when we tried to book in & she got back just as we were heading there so we had a bit of a wait on our hands. It's interesting but equal parts sad to realise just how many adults were considered "problem" people & took up the roll well in school because they got tired of being told they weren't trying hard enough. Ahh, anyway, hooray on your hats!

I had to get a new one this year too because my old one bit the dust. I found one with an awesome wide brim, but the bowl of it is super shallow which is annoying. Ahh well, I'd rather have a shallow hat than no hat!