Got a diagnosis, Visual Processing Disorder

[Cindy in CA]

Kendra,

Do you have a different pair of Irlen lenses for night driving?

Ben put an Irlen overlay on his tablet and phone. We couldn't find any for my IPad. Is there anything?

Nick can write just fine. Got A's on everything first semester of college. His problem is he is extremely slow and the lighting is never right for him so hopefully the Irlen glasses will help. Plus getting started takes forever, all his school work has always take way longer than it should. Hope to have his glasses soon.

Ben has difficulty getting thoughts onto paper. This may or may not be VPD. He is noticing great relief in reading using overlays right now until he has his dianostic appointment for color, hopefully soon. He does not need glasses but we will get him some some today or tomorrow to have tinted and he wants to do contacts.

This is so expensive. Has your insurance paid for any of it for your family?

I need to order my glasses too. This is a lot at once, all 3 of us. Nick's color testing is done. Now Ben and I need to do it.

[Kendra AU]

Cindy,

Yes, I do have different for driving, but it's not intentional. So for daytime driving I use dark sunglasses that are those huge bug eye type ones that were all the rage with girls for a while. I didn't buy them for style, but because they block all incoming light from my face & they are dark enough to drive with. I'm on my second pair of Irlen Tints, my first pair were quite light & I keep those in the car for night driving. They are enough to help me not be in pain from oncoming lights, but not so dark that I can't see properly.

My current tints are quite dark. People can't see my eyes through them which I always forget when I wonder why people are trying to decide if I'm upset or deep in thoughts. There is an overlay for ipads, it's the same app available for Macs, but it's quite not free. There's one called Claro View that's $12.95. I thought there was another, but I can't find the name. I don't have an ipad myself so I've not had to worry about it & I don't use my phone for things like that. For a while, though, we did have one of the plastic overlays the Specialist gave us on Morgan's ipad. He ended up taking it off because it got scratched up enough that he found it annoying.

She often gives him 2 sets. One full size & one book size as she knows we homeschool & figures he'll need both.

Morgan can also write fine, but slowly, so long as he has his glasses. He writes quicker if we print things on his special coloured paper. Our specialist will work with the kids both for tints & then for paper colour. One of them needs a blue & one needs a grey. Thankfully I can pick up both shades at the local office supply, in fact we're the reason they keep the funny zelda grey in stock. I still copy math books, I also copied the workbook that goes along with Cover Story onto blue for Morgan. He also has his study guides {science & history} on blue paper & his spelling book.

His specialist has urged us not to have him reading from a white board or doing copy type work. That it would be wiser for him to type as much as possible in order to build the confidence & stay on track. The boys actually have tinted "white" boards too. One has grey & again the other has blue. These are just small personal ones, I don't make a general habit of using our white board for specific school stuff anymore, but as both still need spelling I will write out the patterns to look for on there once a week.

What I also found helpful for my eldest in getting his thoughts formulated was NOT to have him read things. I know this is SO contradictary to what people tell you. People mean well, & they aren't off for their own children, but the problem for people with VPD is that all their brain power goes into reading their school work & they haven't got much left afterwards for doing the written portion.

Morgan does everything via audio or video course except his assigned book. History is 100% audio, science he listens to audio lectures & takes his own notes. I'm not gonna lie here, I can't read his notes. They make absolutely no sense to me. In order to get them down quickly he might make drawings, half spelled words, whatever. I'm completely lost when I see them laying around, but he can pick them up & each mark on the paper triggers something he wants to share with us. We've put him in Cover Story this year specifically because it's one of the very few writing programmes we can get in an audio/video format. Math is MUS, & sometimes he does the lectures & the works, or sometimes hubby teaches it & then our child does the work. Either way, everything we choose for him to use is geared towards the idea that we want to allow him to work independently, but are aware of his limitations. We're still using pretty well known curriculum we've just found ways to make it work for us.

Unfortunately, Medicare doesn't cover it here. Our former specialist was covered for the visits because she was also a paediatrician & was able to work the system to our benefit. We only had to pay for the lenses, frames, & the $20 "Yank" fee as she calls it. If you don't live in the USA you have to pay a $20 fee that goes directly back to Irlen. Nice, huh? As if the whole process isn't expensive enough..

And it IS expensive. 3 of us are in these glasses here too. Hubby just wears regular reading glasses. The same year he got his reading glasses our Jayden ended up needing to be checked for Irlen. Let's just say it was an expensive year for vision care, but it was worth it. Our Specialist doesn't expect all the money up-front. We generally have half of it to give her the day of appointments. She's also incredibly lovely & doesn't charge for my re-checks, only for my lenses. After your first appointment, follow ups are less pricey. I don't know about your specialist, but if you don't need a written report after that first diagnosis that will save money too. For us, we need it because I have to show it to the state each year due to home education.

For us we've found the best thing to do is to save money each month for the incoming cost. If you get a pair of frames you love you can buy a second pair down the road to have on hand too. As your needs change you'll need the tint colours changed too. We go in annually, all though this year we were able to stretch it out longer. That's nothing short of a miracle because this is the longest Morgan has ever gone without needing a check. Keep in mind that hormone washes can cause a tint change to be needed. Morgan is on the tail end of that side of things which may explain why he's been able to go longer.

He was delighted not to need an appointment, but a little bit bummed because he really loves his specialist & he had all sorts of hockey news he wanted to discuss with her. Her grandson plays for the Kookaburras {yes the pros} & he couldn't wait to discuss the horrific loss they experienced during the Olympics. That boy! Jayde on the other hand is still going through the wash & I found his glasses on the lounge room floor the other day.

He'd slept in there & I went in to rouse him & was shocked to find the lenses on the floor. This kid had a pair break because of this & he's been really good about not doing that sense. Well, apparently he's felt the need to sleep with his glasses on. This boy deals with high anxiety & prior to glasses never ever stopped moving. When Dr T found the right shades for him this kids entire body came to a halt, he exhaled & said, "I feel so calm." Yes, I cried. Anyway, I strongly suspect he'll need a recheck in March when Dr T is back in town if he can make it that long.

I don't know if any private health insurances cover Irlen, I have no experience with private health funds at this stage. Having said that you'd have to compare your outgoing price for the insurance monthly vs what you pay out of pocket annually for the glasses. This is likely something we'll need to be sorting out for ourselves in 2017 or 2018 if our family lands back in the USA.

I know there are a few people who've trained to become Irlen specialists merely to help others. They charge nothing more then the cost of lenses. I know a lady in the UK was really excited to do that as well, but I'm not sure if anyone in the USA is there or not. I think it's an awesome idea because admittedly this is a pretty big deal for kids who can't function without their tints, but like you said it's can be crazy expensive too.

I'll be curious to hear what you learn about the contacts. My boy isn't sure about them & it's not something we've discussed, but I have been thinking about it of late. He has to wear such dark glasses & a hat I've wondered about that for him working & going to school in todays dramas, which made me really consider contacts because he still gets the relief he needs & no one is the wiser..

[Cindy in CA]

Kendra, thanks!

Sorry for the delay, it took me several tries to read your post. My focus and tracking is terrible. I needed to read a little at a time.

I asked our Irlen Dr. for a 2nd kid discount when testing Ben. I told him I was a single parent. I was shocked when he said he would wave the $300. initial diagnostic cost if we were following through with Irlen lenses. He is skipping testing me so another $300. saved but I have paid him $ 1,050. for Nick already. He charges $750. for the color appointment and lenses. I always have money set aside for emergencies or unexpected expenses. So it is there, but still expensive. I am hoping he doesn't charge both Ben and I, that would be another $1.500. If we get help from the lenses, it will be the best investment I have ever made.

I got a report for Nick and we will bring it to the DSS office at the college this coming week. He begins classes on the 9th and I am guessing his new glasses with Irlen will be in prior. We are all very eager to get our tints, even Ben who doesn't need prescription glasses.

Thanks again for your support, experience and information. Please pray for our success with these lenses.

Nick...to be able to read faster, be comfortable in the classroom, and basically to be rid of some of his VP symptoms.

Ben....to be able to read longer and comprehend the materials, to be able to get his thoughts onto paper and to not have the continuous eye strain and headaches.

Me....to be able to drive at night comfortably. Oh my gosh, that would be amazing. It has been so debilitating.

I would greatly appreciate prayer from anyone reading this. All 3 of us at once, it is a lot to deal with! Thanks!

[Kendra AU]

FWIW, you may find your prescription strengths lessen with Irlen. My boy could have reading glasses, but with his Irlens on he doesn't need them. It levels it all back out again.

The lenses, at least here, cost $241 I think it is. We had to buy a second set for the youngest late last year after his were broken. First time ever, but thankfully we only had to pay for the lens portion, no need for anything else. I don't get charged to be tested, but I do have to pay the lens fee. $750 isn't bad if it includes the $200+ fee for the lenses. Initial appointments with our specialist are $600 ish {a little more} & then we have to pay for frames & lenses & the $20 Yankee Fee.

I'm a bit frustrated by the costs because there are a LOT of people out there who know they need the lenses but can't afford the consultation or the lenses. We have a young man in one of the support groups who is constantly trying to find ways around his Irlen because he doesn't want to pay the price, I don't know if it's a lack of ability or not but it's stressful to watch him struggle.

Each year for Irlen Awareness Week we've considered doing a fund raiser to be able to raise enough money to pay for someone else to be tested & get their first pair of filters. We've not followed through on it yet, because our biggest issue is what will we do for a fund raiser. Where we live the big deal happens to be races, & that's a little too big for us to jump in with!

[Cindy in CA]

750. includes tint consult with Irlen specialist and tints. Vision insurance paid for frames and lenses, mostly.

I hope our prescriptions don't improve initially because our Irlens would be the wrong prescription.

The cost kept us from doing this sooner for sure. That and I did not realize the reading / driving issues were related. All I knew was we all 3 hated florescent lighting. Ben has been fortunate enough in classes to have teachers turn off the fluorescents for him. You can get away with that in a small home school class, but not in college. I always thought the dianostic process was a huge deal. I had no clue $300. and an hour later we'd have a diagnosis and a report on its way.

I can see myself becoming a poster parent for Irlen. Lol. Definitely if the results are what I am hoping for!

[Kendra AU]

It's pretty amazing the changes you'll notice in a lot of areas.

Growing up I was always told I was ungraceful or a bull in a china shop. I don't think the people who said those things realised the pain it caused me, & how much it held me back from trying to do things. That's still true for me today, but I no longer run into things. I sported a permanent bruise on my hip from constantly clipping myself on the end of my bed every time I walked around it. Running into doorways, cupboard doors, & the edges or tables or things happened all the time, now it's a very rare occasion that it happens.

We use to hold season tickets for the pro footy club that would come to town 4x a year. We went to all 4 games & I always thought it was odd that my eldest would start out watching the game & become bored very quickly, merely because he was always asking questions, always keen to know who was playing, & even had his own favourite team. Then, after he got his glasses, he said, "You know, I always knew there was a reason these guys were running around, now I can finally see the ball!" In Australia the football is yellow or red, & those are our "no-no colours."

Years ago I made a "party cloth" which was some beautifully fun party material that I sewed up into a huge table cloth. It's red with confettie, balloons, & cute little party scenes all over it. The first time I pulled it out with my tints on, I actually called my husband into the room to ask him what was wrong with the cloth. There was nothing wrong, I could just see it properly for the first time. Turns out, confetti wasn't really moving around the cloth! It's still used for every birthday celebration & still a favoured tradition, but I can't help chuckling each time I pull it out.

I don't know if your Specialist gave you some or not, but you can get Irlen Awareness bracelets. We were given some when we switched Specialists {our first one retired} & I think I spotted them in the Irlen Shop. Not sure as I've never ordered anything from the USA shop before. I know some people swear by the Irlen Cleaner only, but considering the price we've never purchased it. We can get some pretty fancy cleaning cloths {at $7 a cloth} that do the job without the need for a cleaner on our lenses so it's not an issue. Some people worry that the typical cleaning solution will cause a deterioration of the tint colour. I don't know how true/false that is. We live in Australia, the sun fades everything here! Having said that, we did use solution in previous years on our lenses, but when we stumbled upon the fancy pants cloths it's all we've used & no one's mentioning any triggers that generally mean we need an update of colour.

I am so impressed you guys got your diagnosis in an hour! That's amazing, it usually takes us 3-4 hours. The kids end up needing breaks so she works with one, swaps him out when she can tell he's tired, & repeat until she's done. Did you end up with brain exercises? Our eldest was severe enough that he'd managed to switch off portions of his brain & had a list of exercises that required using both sides of his brain at once. Things like touching your right hand towards your left foot, we'd turn on music and make them into dance moves for him, but it was seriously hard work for him. Our younger didn't need them, kinda crazy how so many people can have the same diagnosis, but require different helps! The brain is just so incredible.

Hoping you guys don't have to wait too long on your lenses. I have no idea what the turn around time your way is, but we only have 1 lab in Australia, & it's always a 3 week turn around process for us.

[Cindy in CA]

Kendra, we were aware of Irlen and had looked at the site taking the self tests for a year or two. When I finally took Nick in we were all 95% sure we all had some level of Irlen Syndrome due to florescent lighting, but had no idea it was affecting other aspects as well. We were already using colored overlays to read sometimes and our eye Dr, tried a tint for Nick she was able to do, and it helped a bit. So really we just needed the Irlen specialist to confirm what we suspected.

I think the boys being 19 and 15 helped too. They did not take breaks. They were tested on different days. He stated an hour for the initial testing and that was what it took. The 2nd time we went Ben came too. Nick did his color stuff first which took maybe 1.5 hours and then he diagnosed Ben which was an hour. Ben and I still need to go back to do color.

Good to know about the cloths. No no exercises.....yet.

[Kendra AU]

I hope your next appointment goes well! I always find it so so interesting to watch the colour choosing process with my kids. I kinda hate it for me because I know I'll end up with a headache, but it really is interesting. The specialist generally knows what range we'll be in, but does try a few from the no-no range because occasionally people need them. One of my boys held a colour up to his face & instantly dropped them & fell back in the chair. It was a crazy reaction, but they were just so painful for him. Makes me grateful the lenses are plastic!

I suspect we have to sit through a longer session because our specialist is a Traveling Specialist. She only comes to Tassie every so many months, so you need to get it all done in your one visit. She's so booked up that she's had to start coming a little more often & even then fills in really quickly. We get notification as soon as they are making plans so we can book in & we hop fast because you'll miss out if you don't jump. Crazy! I told my boys we need to get ourselves trained, but they said that sounded like a horrible idea. I think it was the idea of random strangers, more then helping others.

My eldest actually wrote to Scholastic a year or so ago & asked if they'd ever considered printing books on coloured paper. They print books on black paper with white font for people with dyslexia & shared what Irlen was & how a grey-blue hue is often the easiest on anyone dealing with the problem. He had a pow-wow with his specialist to gather information before writing. He never even heard back, which is a little sad, but we encouraged him not to give up.