To continue VT or not to continue VT; that is the question

[Laurie4b]

I am really debating what to do about VT. This is going to be long, and may be more therapy for me than a realistic chance that anyone will wade through all of this, LOL!

 

I finally called the referring optometrist and shared with him my concerns. (I really trust the referring optometrist.) He suggested that I contact the VT optometrist directly and ask for a consult, rather than going through the assistant who oversees the VT or the technician, who actually does the VT. The consult is next week.

 

Here are the options:

1)Continue VT with this practice

2)Quit this practice and continue with another twice as far away, but half as expensive (this would be a net savings, even with gas, though obviously a bigger chunk of time)

3) Decide not to throw good $ after bad and quit

 

Here's why we're doing VT:

1)Severe visual processing issues and visual motor issues.

2) Ds skips words, phrases, even lines with regularity in reading. Amazingly, this doesn't affect comprehension as often as one might think, but I don't think he'll be able to continue to get away with that as he gets into high school level material in a few years.

 

This is copied from the initial eval:

"My impression is that Andrew demonstrates the following conditions:

Esophoria (378.41)

Oculomotor Dysfunction in Saccades (379.57)

I recommend a program of vision therapy. This program will be directed at the poor tracking skills, focusing ability, eye teaming difficulties, postural difficulties associated with writing and reading, and visual perceptual training."

 

Ds is on grade level except in written language (because he can't write due to dysgraphia. His written expression is fine if you don't count off all the mistakes due to trying to deal with the dysgraphia and residual dyslexia (such as spelling errors)

 

I have approached VT with an open mind, but with some skepticism. I'm aware that the research evidence isn't of the quality that engenders confidence outside the profession of optometry. I'm also aware that there is quite a bit of good anecdotal evidence, though being anecdotal, we can't really know exactly whom VT helped and what about it helped. The problem is that there aren't options that ARE broadly accepted for remediating visual processing issues. So we figured it was worth the gamble.

 

Our situation:

Ds has been in VT since the last week of May. With the exception of one week that I took off in utter exasperation, and as the only way I could see that would enable us to continue, ds has at least attempted the exercises at home. (At the beginning, I supervised him carefully, but after the practice said they would prefer that I not watch the sessions and after countless arguments over the discrepencies between the written directions given to me and the directions ds insisted were correct (often later confirmed by the therapist--so why did you not tell me you'd altered the directions?!), I now just let ds run through them on his own. The point is we've been pretty compliant with what is asked of us at home.

 

4 1/2 months and $2500 later, we see no improvement except that he and his brothers think he plays video games better. :glare:Not an outcome I'd invest $25 in. His coordination at baseball remains the same. His word-skipping has certainly not gotten better, and may have gotten worse. He still makes reversals. The OT we see recently gave him a Beery VMI and there was no change statistically on that either. (In fact, he was one point short of statistically valid change on the motor part, but had gone down--but within the margin of error on the visual-perceptual part.) So besides my observations, there is objective evidence he isn't getting anywhere.

 

When I raise questions, I get told essentially, "Trust us." I asked when I should expect to see improvement and was told, "Not till therapy is done." Supposedly, now the eye movement issues are fixed and they are working on ways he needs to use his eyes for reading specifically. (That doesn't make sense to me either.) However, I really do expect to see some improvement. We saw improvement within a few weeks with OT. I expect to see improvement within a month or so with students I tutor in reading (not that they are done, but I should see a jump in progress by at least a month.)

 

Is there an actual reason that I shouldn't see progress till the end of therapy? (It feels an awful lot like a hook to keep the rest of the $$ coming in. I don't get the feel that these folks are scamming or trying to rip me off, but I am not sure where they get their confidence from either. This practice has a really good reputation. ) Did any of you suddenly see great leaps of progress at the end of therapy?

 

I asked about starting Ritalin for ADHD to see if that would enable him to concentrate better for the VT to help and was told "We treat the underlying issues rather than the symptoms." Well, he's still very distractible, can't get his school work done, and I'm ready to try meds.

 

I really hate to quit, but I also hate to keep paying for this if it just doesn't work. I am very tempted by the other practice, but wonder what it would do to progress to switch midstream. Based on your own experiences, what would you advise?

[cillakat]

"Well, he's still very distractible, can't get his school work done, and I'm ready to try meds."

 

Based on my experience I'd say it's a great option:iagree:

 

If it doesn't work, it doesn't work. You can ditch the meds, continue VT and be out a whole lot less $$ overall.

 

And if it does work? You might have a [potentially] easy fix for the issues of loosing ones places, skipping lines etc. The difference in my child's reading and writing with and without adderall is measured in years. Years. She still has classic mod/severe dyslexia (phonological) but with the adderall she can track, stay on line of text, read appropriately leveled text with perfect comprehension. While she's still dysgraphic (with no fine motor skill concerns....that area is strong), she forms her letters very very nicely on adderall and writes very legibly. Without the adderall her handwriting drops to the level of a 5-6 yo and she cries the whole time 'why won't my hand do what I want it to do!!!'

 

Having made it sound like the panacea for all issues academic, I will say that we have adderall side effects. It can affect her mood at times.....we've messed around significantly with meds, dosing, timing etc. It can increase her irritability.....but at other times can smooth it out. It's complicated.

 

But with it, she enjoys a measure of success with reading and writing (and math) that simply wasn't coming down the pike any other way. Overall, it's been worth it......she makes sure to take it in the am b/c she likes the 'calm regular' feeling it gives her. She tracks the time from dosing till we start school to make sure she has the full 45 minutes that she needs to get full effect. Considering that there's very little else in her life that she attends to so well, it's clear from where I stand, that to her, the bennies outweigh the drawbacks.

 

All the best,

Katherine

[Mom0012]

Laurie -

 

I really feel for you. I haven't been through this with VT, but with other therapies. It is so hard when you are paying so much both financially and timewise to continue when you are not seeing results. On the other hand, it is really hard to drop the therapy when the therapist keeps offering so much hope. I have definitely been in the position of thinking I would continue something for "just one more week" and then make a decision and when the week was up, I was still not be ready to give up even though there weren't any obvious results.

 

I can't give any great advice, but it certainly sounds as though you've given the VT more than a fair trial period. I hope you either get some sign of progress or peace about discontinuing the therapy.

 

Lisa

[EKS]

I think I told you this before, but my sons' therapist insisted that the parent participate in the session because she thought it made the exercises at home so much easier to supervise. It also made it possible for me to report to her what my sons were struggling with and what was consistently easy so that we could move forward with confidence. With the exception of computer exercises, she also insisted that all of the homework be parent supervised, with the parent not just a bystander, but totally involved.

 

I am so sorry that the practice you're going to is making things so unpleasant and difficult. My children benefitted enormously from VT, with very obvious changes in their behavior and abilities. If they continue to not let you in the room during therapy, even after you explain that not being there makes it impossible for you to properly supervise the homework, I would move to the other practice. I wouldn't stay in the situation you are in now.

[EKS]

You know, VT didn't help my 12 yo with distractiblilty and getting his schoolwork done. He has always met the criteria for diagnosis with ADD. My 6 yo was very visually distractible and VT did help with that, quite dramatically, actually.

 

The only thing that helped my older boy with those things has been protein breakfast (what we did first) and now, finally, medication. It's like night and day.

[Rod Everson]

Hi Laurie,

 

Regarding throwing good money after "bad," did they successfully address the esophoria? You seem to say that they say they did. They can measure that objectively, and if it's indeed been addressed then I would consider at least part of the money spent so far to be "good."

 

I see many kids following VT who still struggle with reading. VT isn't a reading program, as you no doubt know, but it does make it easier to then address the reading problem, in my experience. Often the visual "jumping around" after VT is due to the persistence of the wrong reading strategy, usually a guessing strategy. It takes training to get a child to go through an unfamiliar word, left to right, decoding as he goes. (In fact, many reading programs encourage other behaviors such as look at the suffix first, find a root word inside the longer word, look at the picture, etc.)

 

Since you tutor kids, that may not be an issue, but it could be. A large percentage of the vision-challenged kids use guessing as a primary strategy. It's very difficult to get a child to dump a guessing strategy. I've found that you have to convince them that another strategy works better before they will drop the old one, and even then it will keep cropping up from time to time. Associated with the guessing strategy is what I call "carelessness." A careless reader misreads the common short words like the/a/what/that/it/him/has etc. consistently. Usually when the guessing strategy is overcome, the carelessness also disappears because the text is finally really being read as the author intended.

 

Essentially, I've found that VT won't fix this consistently. What VT does is prepare the visual system to deal with the world. Part of that world is learning to read effectively.

 

On another note, you said you have an OT involved. I've always wondered whether many of the ADD-like behaviors I see in some of my clients could be addressed by working with an OT. What does your OT think in this regard? I'm just curious. Also, what does your OT think of going the medication route? I know that developmental optometrists encourage people to go the VT route before considering medication because many visual issues lead to ADD-like behaviors due to frustration, confusion, etc., but as I said I see kids after VT who obviously are still squirmy, inattentive and hard to work with.

 

And finally, has your son shown a stronger inclination to read as VT has progressed? This is one indicator that visual progress is being made, and it's also a very common occurrence, but it doesn't happen in all cases unfortunately.

 

Rod

[Stacy in NJ]

Can the practice you are currently using provide referals/recommendations from patients that have completed therapy and seen results? Would you feel better about continuing if you could call a former patient or two and get their perspective?

 

I remain very skeptical about VT. Honestly, to me it seems like the latest and greatest edu/therapy fad. I understand your reasoning for deciding to go forward with it, but I think your gut is telling you something.

 

I sometimes think that people who try different therapies are reluctant to admit that the therapies provided no or only very modest results. They "hear" that this is suppose to work and think they "see" improvement, but I wonder how much is real measurable improvement or just a placebo.

 

It is a very difficult decision to make whether to go forward with these types of therapies. I do sympathize.

[Ottakee]

Well, personally, I would try the meds at this point. If they work, you might see a huge difference and if they don't you aren't out a lot of money.

 

We tried VT---didnt' see any results. We did 2 sessions a day of some sensory integration therap---again, no results. We did counseling, diet, neurofeedback, etc--still no results. Meds---HUGE results in a very short time.

 

I am not for meds as a cure all for all kids or as the first thing to try for a "busy" child but when they are indicated, they can be a huge help. It did take us a few tries to find the right meds, dose, etc. but I am so happy we did.

[Laurie4b]

Thanks for sharing your experience. That's encouraging. I've been trying to get hold of the dev. ped I'd like him to see, but if that fails, our family doc will prescribe. I already have a "mild" ADHD dx from an np. She was a bit hesitant because she thought it could be the visual issues. It may just be that years of treatment for OT took most of the edge off.

[Laurie4b]

Thanks for the commiseration. It helps!

[Laurie4b]

Thanks--and thanks for sharing about the help with meds.

I have talked with the other practice . They also don't allow parents back, but I talked with the woman who conducted the VT there and she was verrrry supportive and communicative. It had a different feel. I probably should arrange for a consult there before I make my final decision--to see what they would think would be the impact of switching midstream.

[Laurie4b]

Regarding throwing good money after "bad," did they successfully address the esophoria? You seem to say that they say they did. They can measure that objectively, and if it's indeed been addressed then I would consider at least part of the money spent so far to be "good."

Well, part of the problem is that I'm not truly clear about that. The person who oversees the VT (not the optometrist) came out after the progress check with a paper covered in pink highlighter of all the areas of improvement, but did not say specifically that it was gone.

 

I've worked hard to break him of the guessing strategy, which was his own invention. :glare: He tends to anticipate where the sentence is going and use that knowledge to predict words. He does know how to decode from left to right, and to decode multisyllabic words. He has not shown any additional interest in reading yet.

 

On another note, you said you have an OT involved. I've always wondered whether many of the ADD-like behaviors I see in some of my clients could be addressed by working with an OT. What does your OT think in this regard? I'm just curious. Also, what does your OT think of going the medication route? I know that developmental optometrists encourage people to go the VT route before considering medication because many visual issues lead to ADD-like behaviors due to frustration, confusion, etc., but as I said I see kids after VT who obviously are still squirmy, inattentive and hard to work with.

 

Our initial round of OT addressing sensory issues, diminished obvious hyperactive and impulsive behaviors to a very low level. It was great. We went back to OT when some behavior shifts indicated the onset of the hormone drip. It's helped him get back into equilibrium and is a positive, supportive environment for both of us. The OT is helping with motor planning issues such as pouring without spilling, throwing properly (for baseball!), and keyboarding. .Our current OT agrees that meds in his case are worth a try. She sees the distractibility and the finer level impulsivity. (It comes out in things like saying an incorrect answer first, with the correct answer following immediately---or in continuing to type after getting "beeping" feedback indicating he's starting to strike the wrong keys. I don't think any other adults observe too much out of the ordinary--just dh , the np, the OT, and I.

 

Another thing to think about in terms of OT is that there is a connection between the vestibular system functioning and the visual system. OT's of course, are great with the vestibular, and as I shared in a previous thread, that greatly impacted ds's original severe eye tracking, etc indirectly through addressing the vestibular deficits.

 

Thanks for your input. I appreciate it.

[Laurie4b]

I don't know that previous testimonies would help, because there is such variation in what a kid's needs are. I do believe that a placebo effect could be operative in a lot of alternate therapy. I know that with our first course of OT, one of the huge benefits was ds not thinking he was uniquely defective (he saw other kids being treated for similar things) and it was a positive way to reverse a negative cycle of mutual frustration. That may have been worth the OT bucks (we paid half and it wasn't cheap) on its own, and for many kids who have gotten the emotional block to academics going, a similar impact could happen from an alternative therapy and be just the nudge needed to push them into succeeding. However, in the case of our OT, I had NO idea what effect the brushing was supposed to have the first time i did it. Frankly, I was skeptical of that, too. But literally before my eyes, I saw the arousal/attention level shift. I asked him to come with me and do some typing. A kid who couldn't type a 5 word sentence of 3 letter words without about 100 extra movements (no kidding) typed a 3 sentence email with 0 extra movements. Now that went up some after the initial effect, but it was still amazing.

[Laurie4b]

Thanks. I appreciate the encouragement. Like everyone else, I've tried "ABM" :anything but meds. I'm really ready now. I want a bit more info on the long-term impact on the brain, but am ready for at least a trial of tried and true Ritalin. If it works, great. If it doesn't no harm done for a trial.

[ELaurie]

I have come to appreciate and respect your well written, articulate, substantive and informative posts over the years I have frequented this board. Thank you for your contributions here!

 

I only wish I had as much to offer as you struggle to discern what would be best for your dc!

 

I can only speak from my own experience with ds 9; he has visual processing issues as well.

 

Upon the recommendation of Claire, on this board, I pursued a HANDLE evaluation at the McNatt Learning Center for him 18 months ago.

 

In order to learn more about HANDLE, I also completed a two day introductory training course for HANDLE practitioners. I had been down a rabbit trail with our ds before (following a neurodevelopmental approach) which had proven to be harmful in his case, so I wanted to be well informed in this decision. (I'm and LCSW, so it was also continuing ed for me : )

 

Ds 9's HANDLE assessment at the Learnign Center revealed that he has an extremely sensitive vestibular system, as well as low muscle tone (among other things), both of which contribute to his visual processing issues.

 

 

In simple terms (and because I forget the technical name for it at the moment), think about the way it feels when you attempt to focus on a stationary object after stepping off a spinning merry-go-round. A much less intense, but similar phenomenon occurs for ds 9 when he tilts his head, or moves his head in other ways, while reading. Low muscle tone also makes it more difficult for his eyes to refocus.

 

For the past year and a half, I have addressed these issues using an in-home therapy program under the direction of his HANDLE provider. He has completed his HANDLE program as of yesterday (yea!) and I am very pleased to say that he has made significant progress with his visual processing issues, as we addressed the underlying vestibular issues and low facial muscle tone.

 

From a HANDLE perspective, ds 9's visual / auditory processing issues were considered secondary to the vestibular issues; a strength of this approach imo, is that it addressed each of these systems as part of an interconnected whole, with emphasis on foundational systems prior to addressing issues that are considered secondary.

 

As we were completing his HANDLE program, I also implemented an Interactive Metronome program for him, under the direction of an OT in our area. This helped dramatically with his attention / focusing issues, and has made a real difference in his academic work this year.

 

I hope you will find the above links helpful, and I wish you well in your endeavors to help your ds.

 

Warmly,

[Laurie4b]

Thanks. That is interesting. Ds also had major vestibular issues--significanty treated during the first round of OT, but possibly something remains. He also is at the low end of normal muscle tone. And has visual processing issues. Our current OT is starting him on a program called Astronaut Training. It's designed to really stimulate various vestibular receptors and work with the integration (I'm probably saying this somewhat wrong) of the vestibular and visual systems, with a little auditory stuff thrown in.

 

Did you have to travel to the McNatt Learning Center? It would be a long trip for us. I looked at some of the Handle exercises. They are similar in some ways to some things we've been given to do (but not very systematically) by the OT. Do you happen to know how old someone can still benefit from Handle? (Ds is 12) How much did the 2 day training cost? How much does the Handler (teehee) charge?

 

I used to be a LCSW, too. :)

[ELaurie]

Did you have to travel to the McNatt Learning Center? Do you happen to know how old someone can still benefit from Handle? (Ds is 12) How much did the 2 day training cost? How much does the Handler (teehee) charge?

 

I used to be a LCSW, too. :)

 

We live in the Chicago suburbs, so it's "only" ;) a 2 1/2 hour drive for us. However, there are providers in other areas who may be closer to where you live. Feel free to PM me about this if you wish - I met several of them in the training classes.

 

I think the 2 day workshop was $275 when I attended; according the HANDLE website it's $350 now. However, I called the HANDLE Institute and offered to help with registration, set up and book sales, and was able to attend for $75 :001_smile:

 

The cost for "Handling ;)" varies from one provider to another. Because I attended the workshop, I was able to get a discount on the cost of the initial evaluation from one of the HANDLE providers whom I met during the weekend training (she was also helping with registration). If I remember correctly, she charged about $90 for the initial eval, which lasted about 2 hours. It's generally quite a bit more than that.

 

When I transferred ds to the McNatt Learning Center, his first appointment was billed as a follow up appointment, rather than an evaluation, so the cost was $190. The visits are supposed to last about 2 hours, but I have found Matthew McNatt to be extraordinarily generous with his time, and it's not unusual for him to spend 3-4 hours with us.

 

Our ds sees his HANDLE provider every 3-4 months. In general, the cost for a HANDLE program is $2000 over a 1-2 year period. Some practitioners are licensed in other disciplines, which makes their services reimbursable by insurance.

 

"HANDLEr's" work with clients in almost every age group, from toddlers to seniors, including those who have experienced a stroke and brain injured patients.

 

Let me know if you have other questions :001_smile:

[cillakat]

Laurie4b wrote:

I don't know that previous testimonies would help, because there is such variation in what a kid's needs are.

 

me:

your previous testimonies? mine? others? I'm not sure what you're saying...

 

Laurie: I do believe that a placebo effect could be operative in a lot of alternate therapy.

 

Me: definitely. and that's not always a bad thing:) any benefit is better than no benefit, even if it is placebo. Sure i'd take a real 'fix' anyday of the week, but based on what I see right now and looking back at the road we've traveled -- well, let's just say I appreciate what's good, when it's good...even if it was just placebo.

 

Laurie:I know that with our first course of OT, one of the huge benefits was ds not thinking he was uniquely defective (he saw other kids being treated for similar things)...

 

me: yes, that was so so helpful for Alana too. and the postive adult interaction with Nan (her OT) was fabulous for her since she'd spent the several previous years being in trouble with her teachers and dh and I so frequently.

 

Laurie: and it was a positive way to reverse a negative cycle of mutual frustration. That may have been worth the OT bucks (we paid half and it wasn't cheap) on its own

 

Me: Totally agree.

 

Laurie:However, in the case of our OT, I had NO idea what effect the brushing was supposed to have the first time i did it. Frankly, I was skeptical of that, too. But literally before my eyes, I saw the arousal/attention level shift. I asked him to come with me and do some typing. A kid who couldn't type a 5 word sentence of 3 letter words without about 100 extra movements (no kidding) typed a 3 sentence email with 0 extra movements.

 

Me: yes..brushing was initially very helpful for her. And for island of improvement, I was grateful. Does it help now in any global way. No, but like I said, I'm happy for the good when I can get it.

 

I am happy for the islands of happiness that OT created for my dd. But in terms of overall value, just looking at the $$ and benefits over time in *all areas*, the adderall has been dramatically more helpful.

 

We're paying her therapist (talk, play, CBT, social skills) what we paid the OT and that is also having benefits that carry over into other areas - in global ways. Intense physical exercise is also more 'globally' beneficial for her than OT. I think alot of that has to do with the fact though that she didn't have any gross or fine motor issues. And the sensory things just weren't helped overall, in any lasting way by OT.

 

While I was happy to get the islands of goodness that she did experience from OT, I think *our* time/money/efforts would have been better spent on 1:1 therapy, meds, and intense physical outdoor activity. But of course hindsight is always 20/20.:grouphug:

 

In retrospect, starting with the major thing first (the ADHD) would have been most helpful (for my dd's situation).....rather than starting from an OT and social skills perspective. Getting the ADHD reigned was fundamental (structure, routines, behavioral mods, intense physical exercise....and meds if needed...).

[Laurie4b]

me:

your previous testimonies? mine? others? I'm not sure what you're saying...

 

 

I was responding to Stacey, who said:

 

Can the practice you are currently using provide referals/recommendations from patients that have completed therapy and seen results? Would you feel better about continuing if you could call a former patient or two and get their perspective?

 

I was saying I don't really think it would help me to know what others' experiences had been at our VT practice, because each child is different.

 

Thanks.

[cillakat]

ahhhh:) thanks for clarifying.

[Twinmom]

Laurie...running out the door here, but just saw your post and wanted to drop a quick note. With DD and her therapy, we could not actually see a huge improvement during the ocular motor stage, which was the first half of tx. She would, however, test out better in that area. Once she moved past ocular motor and into visual processing issues, the jump was immediate, significant and astounding. So, on the basis of that alone, I would not abandon tx. (Oh, and sidenote...you would actually be allowed in the back at the second therapist if you asked after she gets to know you! ;) She's not opposed to it at all...just during the eval.)

 

On the distractability...I'd look at that as another layer all together. You've got the VT stuff, then you've got the possible ADHD stuff. DD's anxiety issues lessened with the remediation of the visual issues but did not disappear. Now, we move on to the root of the anxiety and have started meds. She's doing great, esp. since we can now show her that she's reading at nearly a 5th grade level and can begin to release the school anxiety.

 

More later...pm if you want.

[Laurie4b]

Thanks. That's very helpful to know that the ocular motor phase doesn't show up IRL.

 

My appt. with the VT optometrist is Wed.

[Twinmom]

Be sure to check back in and let us know how it goes! Good luck.

[Laurie4b]

Thanks. My struggle will to be honest about my doubts without insulting people who believe in what they're doing. I hope they can be objective about a consumer spending 1000s wanting more than a "trust us".

[Rod Everson]

Thanks. My struggle will to be honest about my doubts without insulting people who believe in what they're doing. I hope they can be objective about a consumer spending 1000s wanting more than a "trust us".

 

Hi again Laurie,

 

A mother was in my office last month having decided to bring her second child to vision therapy. I asked if VT helped her first child. She said that following therapy she really didn't think that she'd noticed much change. However, over the next two years, her child went from being the worst reader in his class (in late 2nd grade) to one of the best readers (by early 4th grade.) I had no reason to work with that child, as he knew phonics reasonably well going in to vision therapy. In my original notes, I had written "probably no need for reading instruction following VT, assuming VT is pursued."

 

(This is what makes me quite different from most reading instructors, by the way. I don't assume just because a child is struggling with reading that it's obvious that they need me, i.e., that they need reading instruction. I often tell parents that their money is better spent on vision therapy than on paying me to work with them. It took me a few years to figure this out, but the kids I see are better off doing things in the right order.)

 

Just another anecdote, I know. But I keep hearing the same sort of results over and over so I hope you continue to keep an open mind.

 

Rod Everson

OnTrack Reading