Gifted Issues Discussion homepage Forums Twice Exceptional Vindicated and not happy (vision issues)

Holy cow, Pemb, that is great news. Kudos to you for keeping on it.

Wow!

Yay Pemberley - that's great news!! I would say I'm surprised... but I'm not. We saw equally dramatic changes the first three months of VT (in our case our dd went from a struggling reader to a kid who loved reading so much she never comes up for air - and it all happened truly that quickly). The tough part was the next stage - where progress isn't as obvious or as quick, and as the lessons start becoming more of a routine than something new and exciting to look forward to (ok, I suppose my dd never thought of them as exciting lol). Not everything "stuck" for our dd either - but it was so totally life-changing for her.

I'm glad your dd's had great results - just so wish someone had noticed her vision challenges earlier in her life!

Best wishes,

polarbear

Here's what I don't get -- why aren't the relevant weaknesses strengthened just by reading practice?

Hi Meg,

I can't give you the specifics for Pemberley's dd, but I can explain why the relevant weaknesses that my dd experienced couldn't be resolved just by practicing reading.

First, the issue isn't that the child doesn't understand how to read. The issue is (in my dd's case) weakness in the muscles that support the eyes. The weakness (for my dd) resulted in difficulty focusing the eyes together, severe double vision, the vision in one eye often being turned off when the inability to focus overtaxed her brain, severe lack of peripheral vision, and difficulty tracking (eyes don't follow the same direction at the same time). All of those symptoms, occurring in a child who is in early elementary school, meant that learning to read was difficult for my dd, as well as the act of reading. Using her eyes to read for any period of time resulted in extreme fatigue. She often skipped lines when reading, as well as wasn't able to make out simple sight words that she knew simply because her eyes didn't focus well enough to recognize letters. Practicing reading couldn't solve the issue of weak muscles, and it also wasn't helping much in terms of improving reading ability because of the inability to see and focus well.

Vision therapy is made up of exercises that exercise the eye muscles, much the same as riding a bicycle exercises certain leg muscles, or swimming exercises specific arm and leg muscles etc. With exercise, muscles get stronger and develop the ability to work together. I don't have time to list out how specific exercises worked, but there were many exercises that really don't look much like reading at all.

I hope that helps some with explaining the difference!

Good question

polarbear

Ok all you VT alums I need some help.

Last month I posted an amazing success story about how much my DD10 has improved since starting VT in May. I got the results of the visual perception eval the other day. All in all not nearly as strong as DO had led me to believe. Still some areas measuring below the 1st percentile and in single digits, a few areas around 25th percentile and one, Spatial Organization, measuring 84th percentile (2 years above age level).

On Tuesday DD texted me from the school bus saying she was feeling nauseous. She has been saying this off and on recently and complaining of stomach aches. She made it to school without getting sick, barely, and I immediately picked her up. I had a phone conference scheduled with the VT that morning so I told her about this. She said that she believed it was related to the VT, that her brain was reacting to suddenly getting visual input from both eyes. "That all over body feeling is common at this point." She said we should expect it to last a couple of weeks. We discussed that the OT in school is going to incorporate some of the VT excercises and that we might drop to once per week in office so DD doesn't get overwhelmed. A couple of weeks ago we reached the point where DD was beginning to get less cooperative. One particular exercise seemed to precipitate this nausea so its been harder to get her to do the excercises daily.

Later that day we went to her appointment and the front desk person told me I had an outstanding balance for a "no show" appointment. I made it absolutely clear I had cancelled the appointment in question - pointing to the exact time and day that I had called. She made clear there was "no way to write off a missed appointment." Eventually they relented but I made clear we would not be back if this was not resolved. I left with a bad feeling...

Today, 10 minutes before her appointment as DH was driving her there, I got a phone call saying they had left me a voicemail "a few days ago". (No such message on home or cell phone.) Supposedly they had discussed with us that the visual perception eval was not likely to be covered by insurance. (Umm... No they didn't. In fact they assured me it would be, collected my copay and sent me both hard copy and digital versions of the report.) 10 minutes before the appointment they tell me it was declined and I have to pay $500 for it before DD can be seen today. First I've heard of any of this while DD is in the car 10 minutes before her appointment. And don't forget the no show policy meant I would have gotten charged for the cancelled appointment...

Obviously no chance to discuss with insurance. For speech eval this summer I got all the evaluation codes and confirmed coverage before eval because I was told it might be an issue. So far insurance has covered everything except materials fee and fee for written report, neither of which I was told about in advance. I had NO reason to believe this would be an issue. And it is compounded by their less than truthful actions earlier this week over the appointment I cancelled and their claims that they left a voicemail about this. I am infuriated over their business practices and am beginning to see why VT may have such a poor reputation.

So... DH cancelled all future appointments. We have done 18 weeks of 2x a week therapy. We can do the exercises at home and school OT will be working with her. Had we been given any indication this might not be covered we would have a) worked through our insurance in advance and b) requested a visual perception IEE which I am pretty confident district would have done. This sort of business practice makes me question if I've been sold a bill of goods or if the results the DO reported were real.

So... Oh wise members of the forum... am I right to feel concerned enough about their business practices and lack of forthright communication to pull her out? Has she made enough progress that I can justify ending the long drive for services and continuing at home and with school OT? Am I just being rash and making a poor decision to pull DD put of a service that seems to be helping?

When we started the DO said she expected DD to need 6-8 months if we came to the clinic 2x per week, a year if we went once per week. They have also said she has made *amazing* progress - apparently well ahead of what they expected. I know some people here don't get any insurance coverage for this at all and/ or have limited the VT commitment to 12 weeks or so.

Input please?

Please share the name of this putrid doctor to ensure that no others are ripped off like this again.

This is wonderful news!

for my ds15, I would say he just tended towards books with lots of white space, and pictures so he could keep his place better without it being a conscious decision, necessarily (captain underpants, and then later diary of a wimpy kid, for example). there were a few exceptions, but mostly anything with just massive text would really slow him down once he reached regular novel size and type a couple years back.
He would also take a LOT of breaks, probably because of fatigue, but because he was older, the only thing I saw was that it was taking him longer and longer to finish a book, and he was really picky about what he would read - so I think these are reasons just reading doesn't fix the issue - the child is pushed away from the areas that are harder and they don't practice on those areas.

Thanks Portia. It's just so frustrating to have something that appears to be working go off the tracks because of bad behavior from the business side of the practice. I would think that with all the quackery and skepticism about VT someone who is "doing it right" would want to assure that their business practices are beyond reproach so as to not get lumped in with all the folks who give them a bad name.

To be clear insurance has covered everything so far - all evals and therapy appointments covered in full. All co-pays paid at the time of service. 30+ appointments with never a no-show or unpaid balance. Absolutely no reason to treat us this way. I would think if someone doesn't show for a regularly scheduled appointment you would call them - to make sure they are ok if nothing else - not ambush them weeks later and demand payment. If you are the one that handles insurance claims for a specific service and have reason to believe you may have difficulty getting coverage I would think you would share that in advance so your patient/client can work out insurance coverage or a payment plan *before* you provide the service, especially when you have a few weeks lead time to make the arrangements. If there is a problem with insurance you ask the insured to check with their provider. You work together to get it resolved, or better yet to avoid the problem before it happens. You don't demand an immediate $500 payment with no prior discussion. And you certainly don't fabricate stories about conversations or voicemails that never happened.

And yes, DO has a large staff who all seem quite young and inexperienced. The therapists and "coaches" are good with the kids it's just the business office staff that make me uneasy. I have not seen that mature, experienced office manager/ problem solver you tend to encounter in most well run medical offices. There is instead a sort of cavalier arrogance that I assume feeds on desperate parents clutching at anything that they think will "save" their child. I thinks that's probably where my unease comes from. It makes me wonder if I have just been gullible. I believe VT has been very helpful but this approach makes me second guess my experience.

Yuck...