I. hate. vision.therapy. (Rant plus request for encouragement)

[Laurie4b]

Rant:

I hate vision therapy. Hate, hate, hate it.

 

It is stressful financially.

 

It is stressful because it eats up time. 1 1/2 hour round trip. I have 4 kids, two in high school and a parttime job. Time is precious.

 

We are not allowed to cancel with less than two weeks notice! If you cancel with less than, you have to make the session up. Twice in a week 1 1/2 hours round trip AND if all that practice at home is supposed to help, what's the good of two sessions per week? Other than to make sure they have their $$? I don't see what good it does ds in other words to "make up" his sessions.)

 

It is stressful because I feel like I'm being taken advantage of. ($100 materials fee for well under $20 worth of materials; the above cancellation policy)

 

It is stressful because their policy of not wanting parents to observe sessions means that I am less sure of what is being asked of the exercises to be done at home. We get written descriptions which 80% of the time ds says are not what he was told. That creates still more chance for arguing with a kid who is already resistant. (The assistant does run through all his exercises verbally in about 7 min at the end of the session. It's meaningless because I can't digest it all like that and the questions come at home).

 

There are no breaks. If we take a week off from OT, there are no consequences. VT is way more stressful and breaks are not allowed (see above policy.) Additionally, we were given handouts at the beginning of VT stating that if ds missed more than 3 days in a row of practice, he'd likely need to start over again on those exercises. )

 

I have real difficulty managing objects. Ds is worse. We get stray pieces of paper each week. He's lost a plastic lens and a special pencil so far. I bought a box that everything fits in to take to therapy and back home. Everything is supposed to go right back in the box. This is stressful not because of VT, but because of my object-management deficits.

 

All of this while knowing that the evidence in favor of VT is shaky. I made the choice to pursue it despite the shaky evidence because there are no non-shakey alternatives to ds's severe visual-perceptual problems. This is another stress in itself.

 

Thanks for letting me rant. (If you've read this far.)

 

A couple weeks ago, I was asked to fill out a long checklist of areas in which we had seen improvement. Out of about 100 items, I checked two: he did read without using his pencil to track and his brothers thought his video-game playing ability had improved.

 

I still want to go through with this because there aren't alternatives to VT that can help my son. This VT has the best rep around. That's one reason I feel stuck. I tried someone closer a few years ago and never went back. He was a flake.

 

Can anyone offer any encouragement to counter all of these negatives?

[JenneinCA]

I wish I could be more encouraging. We stopped VT for the same reasons you are hating it. It was a huge burden on our lives and for us it just wasn't worth it.

 

I can't be much help with the VT, but I will send you a hug because it sounds like you need one.

 

:grouphug:

[Michelle T]

The reasons you list are the ones why I haven't tried VT with my DS. Sorry you are struggling, I am sending good vibes your way!

Michelle T

[salinda]

Here is the website: homevisiontherapy.com. If you can do the therapy at home on your computer it will save you time, money and stress. Hope this helps.

[EKS]

I hate VT too. Its expensive and time consuming and I hated making the kids do their homework exercises. Our round trip was 5 hours but our therapist let me watch the sessions, in fact, she insisted on it because she thought it made the parents understand the homework better.

 

VT has been enormously beneficial to each of my children. It improved their reading, spelling, and handwriting. It made it easier for them to focus visually. I would go so far as to say that it was a life changing experience.

 

It sounds like the practice you go to is doing its best to make an already difficult experience intolerable. If there is anyone else you can go to, I would look into that. It shouldn't be so awful.

[Laurie4b]

Our regular optometrist, who has a small computer-based vt practice, thought ds was too severe for computerized vt. He recommended the practice we are currently using.:(

 

Thanks for the suggestion, though.

[Twinmom]

Laurie, I'm sorry. I hate VT, too. I also drive 1 1/2 hours each way, 3x a week. It s*cks, it's wickedly expensive (we maxed out our card on it this this week! :eek:), it takes away from everything else I need to do with four kids and a life, DH and I are arguing because we are both so exhausted. My kids are irritable, school's not going well, I'm just hanging in there because the end is in sight (Sept. 17th!!!).

 

However (and it's a big however!)...

 

DD is improving, in a big way. I could go on and on about this, but I won't since I need to start school this morning. Suffice to say, she's a different kid. Confidence, reading ability, headaches gone, very little car sickness, willingness to tackle more things, etc. It's huge. And so worth it, despite the difficulties.

 

It sounds like you need to have a serious talk with your VT about the homework issue. Frankly, her stance is causing the therapy not to go as well as it should, IMO. She needs to let you watch, period. You have a valid reason, you are the legal guardian of the child, you are coming in, end of discussion. At least, that's how I'd handle it. The cancellation thing is ridiculous also. What if your child is sick? You probably can't change that, though...I'd stick with fighting the "visitation" thing.

 

I'm sorry. I wish I could make it better. I think it's just one of those things we have to suffer through as parents...:grouphug: I'm there with you, if it helps.

[philda62]

or have you already paid or have to pay in full? I do know that www.diannecraft.org offers alternatives and a lot of encouragement. We did neurotherapy for over a year and I was in tears many of those days. But, she did improve and we are seeing a "light at the end of the tunnel" for her now.

Have you talked to the doc about the in-office therapy. When we started Vision Therapy we saw the doc once every three months and did the therapy at home. We were able to call him whenever we needed.

What I do know is that it was worth it to do all these therapies with my dd. She is much improved. She has a ways to go but at least we are now confident that we can graduate her.

HTH!

Gilda

[Laurie4b]

You and EKS make me feel like a wimp with how much more you drive, etc. !

 

I guess one huge issue is that I am not seeing improvement, so the cost-benefit ratio is tilting heavily to too much cost. We started at the end of May, so that's 3 full months. As I mentioned above, his brothers say he's improved at video games (not what I went into this for, LOL!) and when I had to fill out the "improvements" questionaire, I had him do a fluency reading out of REWARDS again (we'd finished it and had stopped school for the summer, so I had a good comparison) and he did read without underlining with his pencil. (However, prior to the last time with REWARDs, he hadn't used his pencil to track either. Sometimes, he comes up with a "thing" he does for kicks more or less, for a while. Still, it did look like tracking had improved.As we get back into school this week and next, I'll know more.)

 

How long did it take before you saw improvement in your dc?

 

If the kid is sick and you cancel, you have to make the session up within 14 days (that means another day of driving to VT in one week. Goody goody.) OR pay $50 for not coming. I called to ask to cancel with 48 hours notice back when ds was in a drama camp that I didn't realize went into the afternoon, and that's what I was told. We were allowed to cancel without a make-upwhen he was out of the state and I gave 2 weeks notice. This has to do with paying the therapists to come in.

 

I have said that I need to go back with the VT starting next week. This week, I'm not even going to monitor the homework. I typed up a chart of what he's supposed to do (it totaled about 45 min though they say homework is 20 min per day) , and gave it to ds and said it was up to him to do it. He can ask if he needs help.

 

I'm trying to create some space for myself to be able to work on this with a good attitude. Right now, I'm just "done."

 

Thanks for the words of encouragement!

[Laurie4b]

5 hours round trip. You are the mama! I don't think I could do that!

 

How soon was it before you saw improvement?

[Greta]

Laurie, you've been such a huge help to me with the dyslexia/dysgraphia stuff that I really wish I could return the favor. But I know nothing about vision therapy! So I just wanted to send good vibes your way. It isn't much, but it's the best I can do.

[Laurie4b]

Well, we've paid a lot so far. We can drop out without much more penalty. I don't know whether proceeding would be throwing good money after bad, or protecting our intial investment by following through.

 

We don't see the optometrist at all. We see an assistant who we were told was "certified" in vision therapy. The optometrist did the intial evaluation, but we haven't seen her, or talked with her, since. The assistant is following a specific scope and sequence because I asked to see it. What they're doing does make sense, and I hate to just withdraw, but I'm just in a funk right now because of a combination of the nagging doubts about the efficacy of the therapy plus the costs compared to not seeing results yet.

[Quiver0f10]

You all are scaring me! We start VT in a few weeks ( finally!). Atleast ours is oly a 30 minute drive and is less than 5 minutes from where he gets OT. He will do OT 12:30-1:30 and then VT 2-3 so it works really nice for me as far as drving and being out of the house. I just hope it helps him.

[bettyandbob]

it was the best thing we ever did.

 

Our optometrist sold us a computer program and gave ds some exercises beyond the computer program. The computer program sent results to the optometrist. We visited the optometrist every month or so (longer after we were further along). He retest ds and change some exercises. This program lasted about a year.

 

Ds was having serious problems when I first had him tested. The first doc we saw would have been a horrendous weekly commute. I cried when the testing came back as to how bad this were, because I knew we could not put the time or expense in our schedule. I put it aside for a couple of months and then found out about this other optometrist. And then we visited him and he told us ds would do most of the work at home and we wouldn't have weekly appointments.

 

Anyway, ds has no headaches anymore. His eye doesn't wander. His eye doesn't vibrate. I did say he had serious problems. I was hoping for a miracle before I made the committment to the first doc and I guess I found one.

 

Vision therapy worked for us. So, I think it's real. If you can investigate the homeprogram. It can save time and money. You do have to keep track of the materials and you do have to do it daily.

[Twinmom]

Laurie, here's another thought you may not have considered. VT has shown improvement quickly for my DD because we have condensed 9 1/2 months of tx into approximately 2 1/2 months. We do double sessions (45 min each combined to an hour and a 1/2 of tx each day), 3x a week. We did this because of the distance, and because it was summertime. It would be very, very difficult to have done VT regularly during the school year with two little guys in private K with 12 pm pickup!

 

In any case, if you aren't seeing the progress I am seeing, that may be part of the problem. If you are going once a week, one session at a time, it will take much longer to see improvement and I'm quite sure it will look like it isn't working. For us, at the speed we've been going, it looks like a miracle cure! That still doesn't mean I won't be awfully glad to be done with it...;)

 

I think you should still make a stink about going in, ask to see not just their scope and sequence but also their outcome measures (I did that and could concretely see progress), and also ask for progress checks with the doctor. The VT does all of our work as well, but the doc oversees the progress and is willing to meet with us whenever we feel it is necessary (we have to pay, of course...). Perhaps that will reassure you. If they have nothing measuring outcome concretely (say, scores on a PATH program, benchmarks met, etc.), I think you have a valid concern about the efficacy of what they are doing.

[Laurie4b]

What is the PATH program?

 

I'm expecting them to do outcome measures whether they are expecting to do them or not, LOL! There was a lot of testing done at the beginning. Ds had had one of the tests 3 times. Test of Visual perception and ??? (It's got 5 initials) His scores were all over the place over the 3 test times. (No pattern to it. Scores ranged from over 90% to less than 10%, and rose and fell or fell and rose all over the place). Our OT is getting ready to do the VMI again because she's been working on visual/perceptual stuff too. She'll do that a week from Monday, so that will be one objective measure.

 

With ds, I am strongly suspecting that attention and impulsivity are in play. He's been dx'd with "mild" ADHD. I've held off on medication because the VT asserted that vt would fix the underlying problem to the ADHD. However, I'm wondering at this point if meds would fix the visual stuff. Thanks again for the support. I appreciate it.

[Twinmom]

PATH is a specialized program that addresses the neurological underpinnings of reading. It's kind of esoteric, but so far, I think it has been the best part of therapy for DD. Takes a while to describe and I'm off to VT, so here's a website:

 

www.PATHtoReading.com

 

See your pms! :D

[Kathy in MD]

Laurie,

 

My ds hated VT and fought it every step of the way. We rarely did much of the homework. Because of it, therapy took 2x's as long as it should have.

 

Yet it was still worth it. Ds can now follow a line of type across a page, he can read for more than 3 minutes at a stretch, he has a hope of remembering what he read and he can play ball well (what he feels is most important ;)) I may even trust his depth perception enough to let him get his learners permit in about 2 years. ....Naaaaahhhhh

 

It's hard and you have a harder row than I did. But I liked the results well enough that I suggesting that my dh go in for some because he's mentioning problems with his driving and reaction times.

 

(BTW, I put up a post on the general board about my surgery)

[EKS]

Sorry I must have missed this!

 

For both kids I'm pretty sure I started seeing improvement within 3 months.

[Malenki]

Wow! I'd be venting too with what you're doing and the office practices.

 

We just finished 3 months of VT for our 7 yo son. We saw *amazing* progress. However, our experience sounds quite a bit different than yours.

 

We're in what I consider a tiny city but we found an optometrist about 10 minutes away (if I hit the lights wrong). He did the therapy himself and he insisted that at least one parent be there during therapy. We did 45 minute session in the office every two weeks. He'd check progress, look at the numbers and notes, ask us what we were seeing, and then make adjustments for the next two weeks. He'd show me what to do and always allowed plenty of time for questions.

 

We did 30 minutes of actual activities 5 days a week at home; it was usually a full hour of work because of changing from one thing to the next and having to fight tooth and nail to get DS to do the work. For the amount we were paying, I figured it was worth the fight.

 

The first month was horrible. Maybe even the first 6 weeks. Tiger had terrible headaches and the therapy would wipe him out. Not just a little. We're talking a very active boy lying on the floor for the next couple of hours and asking to go to bed early.

 

BUT, it all paid off for us. We started seeing minor improvements within the first 2-3 weeks. He wasn't skipping lines or letters as often. The headaches gradually eased and then the reading started to take off. We were just doing lists of letters (!) at first because his reading was so terrible. He's reading Level 2 readers now with hardly an issue.

 

He's not perfectly normal in his vision yet and we do 15 minutes a week (minimum) still of therapy but now we don't have to go back until next June. He is reading 15 minutes a day out loud to me. It wears him out a bit but before getting through 2 minutes of an early Bob book was torture.

 

Is there any other office you can go to? Our doctor also mentioned the computer programs now if we feel he isn't maintaining his progress or continuing to improve. Even if you had to drive 2 hours each way to a different office but only went once every two weeks that would be a huge savings in gas and time.

 

We had to pay up front the whole thing but it sounds like maybe you could get out of it with your current doctor. I would think at this point you'd be seeing something of an improvement!

[ChristineMM]

My son was suspected to have an eye tracking problem. I sought advice from a mom whose child has Tourette's plus has eye tracking problems directly tied to that. Based on her advice we went to see her Behavioral Optometrist who uses primarily only light therapy. She said and I agreed the whole idea sounds a bit kooky but she said it worked. My son was tested and indeed he had a mild to moderate convergence insufficiency plus needed prescription glasses for reading. His treatment was passive treatment with a prism lens in the prescription eyeglasses plus 21 days of the light therapy, done at home with the doctor's unit. They trained me to use it. While not all kids, they said, do well with just one round (21 days), it was enough for my son.

 

I was not interested in going to a HCP that was going to make us come in for office staff administered VT at high costs. (One person I know locally is spending $3K on that alone and that HCP does not take med ins.)

 

I am mentioning this as maybe you could investigate doing the light therapy instead of VT, by changing HCPs.

 

As a cost comparison, my son's initial consult and testing was paid for by my med insurance with just one office copay. He has had just one follow-up visit also paid by ins. with my normal office copay. The rental of the unit normal cost is $60 for 6 weeks rental. Training on how to do it was free. That $60 was not covered by my med ins.

 

So even thought I thought the idea of the light therapy was weird it worked. Follow-up testing showed significant improvement in 'opening up the fields'. My son (age was 10.5, went from begging to just read Andrew Clements type books and begging to not read anything like history or science to now having finished reading Eragon and Eldest. He has upped his reading from my mandated 45 mins a day for HS lesson reading practice to reading all summer up to 3-4 hours a day all on his own.

 

I am jumping for joy to say the least.

 

If you wanted to research on this light therapy I'm speaking of the tecnical term is syntonic phototherapy.

 

One more thing our HCP says he used to do only VT then tried VT combined with light therapy then finally tried just the light therapy and says for many patients the light alone works just fine and so he'd rather avoid the VT which is time consuming and expensive or frustrates the kids.

 

Good luck.

[Guest alikayfamily]

Hi,

 

It does sound like the practice you are going to runs very strict policies. Yuck, I feel for you.

 

One of the reasons why vision therapy has not been "proven" scientifically is that each practice runs their VT program a little differently. Science works on controlled tests. Anyway, I am getting side tracked. I am one of the first children to go though a vision therapy program (1970s). Although VT has actually been around sense the 1950's. I was in the first grade when my mother was told, in front of me, that my learning problems were so bad that I would never amount to anything (Ha). My mother drove 4 hours round trip and I hated it, but it worked. Now my children have the same vision related problems. I have done VT so may times - 5 so far and counting - I've got it down. So feel free to ask me questions. Are you working with flippers? If you are have your child work extra with them - it makes the VT go faster (less sessions). Do them 20 minutes a day. Your child can do them reading a book and flip at every punctuation mark or period. I had my kids do their reading homework this way and "counted it" as one practice session.

 

Next tip, VT kills because it no fun. Take a day a week off. We take Sundays. All hard working children can use a day of rest to be kids. A reward for a job well done.

 

If they will not allow you in to the sessions, ask them to take the time to go over the homework with both you and your child at the beginning of the week. A good recommendation at the end of therapy from you should be worth their time in making this work.

 

Lastly, I hear you about the cost. We are still paying for my daughter's last round. There is a book called How to Develop Your Child's Intelligence - can be found at http://www.oepf.org explains a lot (the book is dry). It has good information in it and VT exercises. My youngest test so poorly that our VT docs recommended that I hold her back from starting kindergarten. I used the book to help her get ready to enter school and to cut the amount of time (saving money) she will need to spent in VT. I am working on a ounce of prevention, and VT at home exercises.

 

Now comes my plug. I have been though this so many times that I have started a blog. The site is http://www.eyeqchildskills.findfastr.com/. There is not much posted, and the contact link does not work yet, but I working on it. My goal is to assist all of us. If any of you have time, please check it out and let me know what you think - and be real honest. Let me know what you would find helpful to post. The email that I use for the site is eyeqchildskills@gmail.com.

 

Laurie my thoughts are with you! VT is difficult, but not being able to develop visual skills is really limiting. As you already know. Keep it up - it will not go on forever! Maybe your child will be like me someday - very happy that my mother stuck with it.

 

Best Wishes and let me know if I can help,

 

AliKay and Family