Vision Therapy

[Shoes+Ships+SealingWax]

Hello Everyone 👋🏼

First time posting here. Last week I had DS meet with a developmental optometrist who confirmed my suspicions of a tracking issue as well as noting a weakness in visual focus, retained reflexes, and potentially something to do with visual processing (an inability to distinguish “forward-facing” letters from those which were “backwards”). He will receive reading glasses and we’ll begin vision therapy next week. 

DS is a strong reader, but fatigues quickly and avoids books with more than a few lines of text together. Hoping the therapy will help him get more enjoyment from books, as he LOVES stories! 

Would anyone be willing to share their experiences? I really have no frame of reference - what did vision therapy “look like” for your child?

[PeterPan]

Every person I've talked to has had their VT be a bit different, so yours will be whatever way your eye doc does it. Is he going to have your ds do exercises for the retained reflexes? If you don't nail those, the vision part will be a slog. 

My dd found her VT very fatiguing and we pretty much did only VT or extremely limited academics plus VT during that season. Your doc hopefully is giving you estimates on how much therapy. My dd needed got most of the convergence, etc. done in 3 months and the visual processing dragged on after that. So it was basically 3 months that we lost. We did lots of field trips. No regrets.

After her VT, dd had a noticeable surge. It was as if her eyes were relearning everything and she was seeing things afresh. We went back through spelling, etc. very quickly (like AAS1-6 in short order) because she literally just needed to see everything again with her new eyes. She had had terrible, terrible visual memory before, so that was probably the reason for the spelling issues. 

So I would say just be flexible and roll with whatever happens. For some kids it's really not noteworthy and keep up their regular loads completely. You never know.

[Shoes+Ships+SealingWax]

7 minutes ago, PeterPan said:

Is he going to have your ds do exercises for the retained reflexes? 

Yes, he said we could work those into the therapy sessions alongside the other work.

Your doc hopefully is giving you estimates on how much therapy. 

The plan is to meet with him every 4-6 weeks. He said he would introduce new tools / exercises each time, teach us how to use them, then we’d be able to take any needed materials home to use daily until the next visit.  He said we should see “significant progress” in 6-8 sessions. So, doing the math... initial estimate of 6-12mo.

 

[PeterPan]

How much is he saying he'll have you work per day? That seems ridiculously protracted.

[exercise_guru]

We did 36 weeks of vision therapy and fortunately I was able to get my insurance to cover some of it. It was still a very expensive therapy. 

I agree on the retained reflex therapy first I would do it for two months ( with an OT if I could find one) before starting VT. I suggest that because VT takes some sincere focus and maturity for the mind to train the eye. 

My sons training was successful and in our follow up he was able to hold all of the gains in tracking, and focusing. If you do not homeschool make sure your child is on the front row and make sure anything you child does not have copy work from the board. Have the teacher provide the paper at the desk so your child doesn't have to repeatedly look up and down. That refocusing is what is fatiguing and so much power and energy is spent doing that they can't learn and can't retain the material. 

Also Kindle is your friend because you can change background colors to reduce eye strain and have a font that makes the book much easier and faster to read. Also if its on a screen you can use the magnification feature. 

[PeterPan]

The reason you do the reflexes first is because the neonatal precede the visual reflexes. 

[kbutton]

16 hours ago, Expat_Mama_Shelli said:

The plan is to meet with him every 4-6 weeks. He said he would introduce new tools / exercises each time, teach us how to use them, then we’d be able to take any needed materials home to use daily until the next visit.  He said we should see “significant progress” in 6-8 sessions. So, doing the math... initial estimate of 6-12mo.

The overall gist sounds good--retained reflexes, daily homework, etc., but it's very spread out. We saw our VT therapist weekly, and then every 6-8 weeks, the developmental optometrist checked progress (the optometrist had a trained person doing the actual therapy). 

Is the reason for spreading it out related to the reflexes? Are they really entrenched?

I would want to know why the appointments with him are so spread out (and it might be fine), but otherwise, it sounds fairly balanced and like he's talking about the right elements for a successful program.

VT was transformative for both of my kids. I hope it all goes really well for you!

[Shoes+Ships+SealingWax]

I’m not entirely sure his reasoning for the timing. I had no idea what to expect, so the frequency didn’t stand out to me when he mentioned it. I assume it is to give each activity / tool ample time before coming back to switch or modify. He mentioned that sometimes parents have a hard time getting the home therapy done, and I assured him that as homeschoolers we could simply work the activities into our “school time”. I do know that the developmental optometrist will be doing all of our in-office therapies personally. 

I remember that when we were doing OT (SPD: tactile/vestibular sensory seeker) coming in weekly it felt like we didn’t really know how well techniques were working after only a few days.

He has retained Spinal Galant reflex and very clearly struggles with separation of upper- and lower- body movements (though that is a milestone for 8-10yrs and he is newly 6yrs, so possibly within the realm of normal?) 

If it feels like too long once we get started I won’t hesitate to push for increased frequency. 

Edited March 8, 2019 by Expat_Mama_Shelli

[PeterPan]

You've got some warning flags there. What is his financial policy? Is there another dev. optom. you can get a 2nd opinion with? When an optom is doing the therapy himself, it means he's not doing it enough to have therapists doing the work. So pair that with his issues with parent compliance and ask WHY he's not getting customers? The studies I've ready show parents follow through when there are RESULTS. So either his regimens are not producing results or his whole approach (the spaced appointments) isn't creating enough momentum to keep people going, which means he doesn't understand how to handle people.

Therapy should be done in short, frequent, intense sessions. That's the best way to get results. And with VT work, if you are working like that, you'll get radical changes (clearing the task, being able to complete it to the assigned degree) in 1-2 weeks. So spacing out to one month totally undercuts his ability to make progress.

Also, a skilled clinician who is doing VT a LOT will get more done in 1 hour of therapy with the dc than you will get done in a week. Seriously. So again, that tells me he's not confident in his skills and in the quality of his approach.

That would be highly unusual to have only ONE retained reflex. Seriously. I guess it could happen, but just annecdotally here on the boards that's not what we see. I would see what your other options are before deciding. I would look for another dev. optom to see if you have options within a sane drive. You could literally be talking about the difference between 2 months and a year here, so that's worth a 2nd opinion or a drive. Also, I would do the retained reflexes FIRST, doing thorough testing yourself or with an OT, and THEN beginning VT. There's no reason to pay good money to do them together. The exercises are simple, and with just 30-40 days of working on them you'll have that spinal galant integrated or at least noticeably improved. I wouldn't mind doing them together if the eye doc was saying he'd get the reflexes done AND the VT in 2-3 months. But if he's saying a year, that's absurd.

Does he wet at night or during the day?

Has he had an OT eval? You cannot expect your eye doc to be an OT. If you could find an OT who is skilled in retained reflexes, it would be worth the effort. It sounds like he's going to need more work than just what the eye doc can do, and it's fine to do BOTH and run them parallel.

Fwiw, I'm sounding negative here. This doc might be fine as far as his knowledge. My dd had her VT back when she was 11, so almost 9 years ago. We've had a LOT of conversations on the boards about VT and conversations before that that have been lost with the software changes. So I'm comparing what you're saying to what has been posted on the boards for those years, and that's how people get unhappy, when there's a lack of progress. And they don't know it when they start, because the doc is nice and they just assume. So start with basics. Therapy should be in short, frequent, intense sessions to make change, and you should see changes typically in 1-2 weeks. Reflexes should be integrated early in the process. Kids who have one reflex retained will probably have more. You should still be referred for an OT eval. Some kids who do enough OT won't need VT. These are just BASICS. It's nothing personal about the doc and his ideas might be great. 

See the other thing that confuses me is isn't Hong Kong (is that where you are?) kind of a good economy? So most docs, when they have issues with compliance, will INCREASE the number of in-office sessions. So if the demographic can afford it, why isn't he stepping that up? I have a friend who lives in DC, where nannies for kids are the norm, and the dev. optom. she visited does ALL THE THERAPY IN OFFICE. I kid you not. Astronomically expensive, but it fit the population, which had more money than they had time. The nannies I guess would take the kids to the sessions, lol. 

So ask the questions.

Edited March 8, 2019 by PeterPan

[kbutton]

I am going to temper Peter Pan's last comments a bit, lol! 😉 Her points are excellent, but she lives in some kind of mecca for VT--multiple places to choose from, etc. The choices near me are more limited. I was fortunate to find one VT locally that had a good reputation (and there was only one other option at the time--they didn't come recommended--they made people skeptical of VT), and if it weren't for the practice we found, we would've had to drive to where Peter Pan lives, lol!

Anyway, our dev opt had someone doing the therapy, but I think she did it herself when she first started. I suspect that if the optometrist had to do it herself long-term, she would've kept the therapy tight (weekly), and had a huge waiting list while referring people as much as possible (not many choices on that). She actually ended up moving, and she moved to the general area where Peter Pan lives, haha. I think that office still does VT, but even they realize they are not offering what they used to because she's not there. But it's helping some people with fairly straightforward issues or not helping anyone, so they are still doing it.

We didn't find anyone outside of VT to do retained reflexes until years after we'd done VT. And VT only worked on them as much as they felt competent to do so--they were definitely not claiming to be OTs, but they knew the connection was real. We have had faster and longer changes from doing the OT with VT than when we do OT alone, so there is something just different about VT. One of mine still has significant reflex issues (some seem okay, but he has a connective tissue disorder that makes his brain and body feedback really disconnected), and the OT that we found that does work on reflexes is making much slower progress than VT did for some reason (and she's doing evidence-based stuff).

I think you have to measure your local mix of options and work it out--Peter Pan has done a lot of therapy at a lot of places, and her kids are farther apart in age than some family's kids are, so she's seen changes over time, observed her kids over time, and she has had time to develop a broader perspective. Definitely keep her red flags in mind, but keep them in context of what options are available where you are.

2 hours ago, PeterPan said:

So start with basics. Therapy should be in short, frequent, intense sessions to make change, and you should see changes typically in 1-2 weeks. Reflexes should be integrated early in the process. Kids who have one reflex retained will probably have more. You should still be referred for an OT eval. Some kids who do enough OT won't need VT. These are just BASICS. It's nothing personal about the doc and his ideas might be great. 

Definitely important stuff here. Just lots of "ifs" attached, lol! 😉 

Oh, our VT told us that 5 days of homework was magic, and that at least 3 is what they get from most people. They instituted homework prizes, and drawings for gift cards to get kids to do the homework. We found that after about three days of homework, we'd have a breakthrough, and days 4 and 5 solidified it. Then we'd go back for more.

[exercise_guru]

PP is right a skilled technician not using a computer program will get far more done than you will with homework except for the Retained Reflexes. 

There are prisms and different modalities to teach the brain to differentiate between different depths and movement of the eye. I did retained reflexes at home. Then I also did Hand eye bal exercises like balavisX . There is a book:Developing Ocular Motor and Visual Perceptual Skills  that does some tracking exercises and has some good exercises. They are not the same as what was done at Vision Therapy. I also tried to get a home VT computer program but my therapist told me that they often do not train the brain correctly and can be counterproductive. 

 

[domestic_engineer]

6 minutes ago, kbutton said:

I am going to temper Peter Pan's last comments a bit, lol! 😉 Her points are excellent, but she lives in some kind of mecca for VT--multiple places to choose from, etc. The choices near me are more limited. I was fortunate to find one VT locally that had a good reputation (and there was only one other option at the time--they didn't come recommended--they made people skeptical of VT), and if it weren't for the practice we found, we would've had to drive to where Peter Pan lives, lol!

Yes!  Not everyone has a choice of VT providers. If a optometrist is doing the therapy himself, it might mean that it's a small practice in a low density population area.  Sometimes we forget that other people don't have the same options that we have (library systems, medical providers, transportation options, etc.); I know I'm often guilty of this! 

[domestic_engineer]

We recently started VT.  We see the optometrist 1x/week, and we have daily exercises that last about 15-20 min/day.  We have not needed to change our school workload with the addition of VT.  In the 8-ish weeks that we've been doing VT, we've seen progress in tracking.  Also visual acuity changed drastically - from 20/20 to being near-sighted and needing correction.  We will wait until VT is completed before getting glasses.

[PeterPan]

1 hour ago, kbutton said:

keep them in context of what options are available where you are.

Well I'd use the guy she has found too, but I would check for other options, not pay a lot upfront, and work in short sessions as frequently each day as possible to expedite progress. Most docs now will correspond with you by email, so she could get more exercises that way if needed. 

It's the whole drag it out, he's the expert thing that gets people burnt. We had someone who posted here years ago (remember I'm an elephant) who was like oh that VT is a crock, on and on. Well it turned out the person had been given very few exercises (1-3) and told to come once a month. But we also have had people who do once a month and get a list of 10-12 things and BANG IT OUT. You can see those are radically different experiences, and the issue is knowing how to know when you're functioning at a therapeutic level and making progress. You should see progress. At first you should simply see that the tasks get somewhat easier, and over time (1-3 months) you should be able to see enough progress that you know you're going the right way.

If you don't pay a ton upfront and you're seeing progress, there are no issues.

Edited March 8, 2019 by PeterPan

[PeterPan]

1 hour ago, kbutton said:

We found that after about three days of homework, we'd have a breakthrough, and days 4 and 5 solidified it. Then we'd go back for more.

Ok, now I'll mess with your mind a bit. Is it possible they had a faster, easier experience because they had both done blocks of OT (for midline, whatever whatever) before their VT? We've had others (Lecka) say their kids no longer needed VT after enough OT. My ds tests so high the optometrist's eyes bugged out, and he's had OT out the wazoo. I just assumed by genetics and because my dd needed VT and had such a hard time that he would too. His scores were so high they didn't even want to do therapy, not for anything. They were like sorry, can't help you. For real.

My dd did a dab of OT concurrent with the VT but it was SO expensive and the OT was SO floozy, we just stopped. And there were things I kept asking about, like retained reflexes, and people would just look at me funny and not know. And there are things she needed help with (interoception for her hyper-responsiveness) that we only now, 10 years later, have materials to treat. Water under the bridge, sigh.

I'm not saying OT replaces VT, but I'm just wondering if there could be a pattern there in how people's kids are responding, how hard/tedious/fatiguing it is, etc.

Edited March 8, 2019 by PeterPan

[PeterPan]

I haven't been to Honk Kong, but it seems like kind of a big place... Well bummer, I'm fiddling around here and COVD is showing only 1. Next is in Guangzhou, Guangdong, which looks like it might not be practical, dunno. Maybe she found hers another way? It was worth a try. Kind of funny for such a big place though.

1 hour ago, domestic_engineer said:

from 20/20 to being near-sighted and needing correction. 

Maybe he's very fatigued? My dd's script is funny and will change every year, just like totally change. Some years it will be with correction, some years no correction and just a boost for computer use. And this has been ever since VT. The doc says it's just kind of the randomness of how she's using her eyes. I don't know that that's a very satisfying answer. She has worn progressives for a couple years now, mainly because she has so much more up close work now.

Edited March 8, 2019 by PeterPan

[kbutton]

2 hours ago, PeterPan said:

Ok, now I'll mess with your mind a bit. Is it possible they had a faster, easier experience because they had both done blocks of OT (for midline, whatever whatever) before their VT?

No, because the first one to do VT had no OT first.

One had VT first, then they both did OT. That seemed to fix 98% of the issues my older kid had, and we had only tiny concerns about the second kiddo at that point when it came to OT stuff. Then the VT issues showed up with the other one. He had VT. Now he's having OT again (and they are tweaking the VT stuff while doing it!). Clear as mud, lol?

The VT we had would refer people to OT first if the kids were clearly and OT mess across the board, but my kids were not showing up as a mess. In fact, my son that did OT, VT, OT showed more symptoms after VT than before doing any of the other work. He's kind of a mess. It was like he was SO out of whack that something had to be put right before the other issues showed up. He's such a mess that one of the biggest things VT did was get his brain hemispheres talking so that he could start hearing speech in noisy environments. It's still a problem to hear in noise, but it's no longer like he's functionally deaf.

Definitely not what people got to VT for, lol! Or OT.

Edited March 8, 2019 by kbutton
fixed confusing typos

[Shoes+Ships+SealingWax]

10 hours ago, PeterPan said:

I haven't been to Honk Kong, but it seems like kind of a big place... Well bummer, I'm fiddling around here and COVD is showing only 1. Next is in Guangzhou, Guangdong, which looks like it might not be practical, dunno. Maybe she found hers another way? It was worth a try. Kind of funny for such a big place though.

Hong Kong is a “big city” but a very small region. While HK is a territory of China the two are still very much separate entities. The languages are different, the medical system is different... we need visas to even cross the border.

Our provider is far & away the most experienced practitioner available. His thesis was (and specialization is) vision therapy interventions for children. There are about half a dozen total optometrists offering vision therapy services. Most work almost exclusively with ambyliopia. Few who are fluent English speakers / have English-speaking therapy staff. None of them are covered by insurance. We’ll have to work with what we have access to. 🤷🏻‍♀️

[Shoes+Ships+SealingWax]

16 hours ago, PeterPan said:

You've got some warning flags there. What is his financial policy? Is there another dev. optom. you can get a 2nd opinion with? When an optom is doing the therapy himself, it means he's not doing it enough to have therapists doing the work. So pair that with his issues with parent compliance and ask WHY he's not getting customers? The studies I've ready show parents follow through when there are RESULTS. So either his regimens are not producing results or his whole approach (the spaced appointments) isn't creating enough momentum to keep people going, which means he doesn't understand how to handle people.

Therapy should be done in short, frequent, intense sessions. That's the best way to get results. And with VT work, if you are working like that, you'll get radical changes (clearing the task, being able to complete it to the assigned degree) in 1-2 weeks. So spacing out to one month totally undercuts his ability to make progress.

Also, a skilled clinician who is doing VT a LOT will get more done in 1 hour of therapy with the dc than you will get done in a week. Seriously. So again, that tells me he's not confident in his skills and in the quality of his approach.

That would be highly unusual to have only ONE retained reflex. Seriously. I guess it could happen, but just annecdotally here on the boards that's not what we see. I would see what your other options are before deciding. I would look for another dev. optom to see if you have options within a sane drive. You could literally be talking about the difference between 2 months and a year here, so that's worth a 2nd opinion or a drive. Also, I would do the retained reflexes FIRST, doing thorough testing yourself or with an OT, and THEN beginning VT. There's no reason to pay good money to do them together. The exercises are simple, and with just 30-40 days of working on them you'll have that spinal galant integrated or at least noticeably improved. I wouldn't mind doing them together if the eye doc was saying he'd get the reflexes done AND the VT in 2-3 months. But if he's saying a year, that's absurd.

Does he wet at night or during the day?

Has he had an OT eval? You cannot expect your eye doc to be an OT. If you could find an OT who is skilled in retained reflexes, it would be worth the effort. It sounds like he's going to need more work than just what the eye doc can do, and it's fine to do BOTH and run them parallel.

Fwiw, I'm sounding negative here. This doc might be fine as far as his knowledge. My dd had her VT back when she was 11, so almost 9 years ago. We've had a LOT of conversations on the boards about VT and conversations before that that have been lost with the software changes. So I'm comparing what you're saying to what has been posted on the boards for those years, and that's how people get unhappy, when there's a lack of progress. And they don't know it when they start, because the doc is nice and they just assume. So start with basics. Therapy should be in short, frequent, intense sessions to make change, and you should see changes typically in 1-2 weeks. Reflexes should be integrated early in the process. Kids who have one reflex retained will probably have more. You should still be referred for an OT eval. Some kids who do enough OT won't need VT. These are just BASICS. It's nothing personal about the doc and his ideas might be great. 

See the other thing that confuses me is isn't Hong Kong (is that where you are?) kind of a good economy? So most docs, when they have issues with compliance, will INCREASE the number of in-office sessions. So if the demographic can afford it, why isn't he stepping that up? I have a friend who lives in DC, where nannies for kids are the norm, and the dev. optom. she visited does ALL THE THERAPY IN OFFICE. I kid you not. Astronomically expensive, but it fit the population, which had more money than they had time. The nannies I guess would take the kids to the sessions, lol. 

So ask the questions.

 

Okay, there’s a lot to dig through here but I’ll do what I can... 

 Most families here consist of parents both working 60+ hrs a week, and kids who are in class all day with tutoring and then heavy homework loads each evening, I have a feeling this is where the issues with “compliance” would come in. Many parents here hardly see their kids at all during the week. Domestic helpers are stretched too thin to perform like a Western nanny; they are house-cleaner, errand-runner, and child-rearer all in one. 

The only reflex tested (so far) was spinal-galant, based on observations the Optometrist made during the initial assessment. I did some “home tests” for others and didn’t notice a response, but it wouldn’t surprise me if all are systematically checked at our first therapy appointment next week. DS had OT for a while about a year ago, and that was identified by her as well. None of the others were. 

He does not have any issues with bedwetting - he was fully potty trained at 3yrs. 

Hong Kong is a business epicentre, but is incredibly split flinancially. There are a lot of wealthy expats, a smattering of wealthy mainlanders, a select handful of locals who have “made it”... but the majority of the population lives in poverty. The healthcare system is socialised, so those individuals have access to completely separate providers once they make it off the waiting lists (easily a year or longer). They absolutely could not afford private therapy. Because of this, there are relatively few private providers (compared to population) for any specialty. There simply isn’t enough need to support them from populations that can afford care. 

[Shoes+Ships+SealingWax]

12 hours ago, PeterPan said:

Well I'd use the guy she has found too, but I would check for other options, not pay a lot upfront, and work in short sessions as frequently each day as possible to expedite progress.

If you don't pay a ton upfront and you're seeing progress, there are no issues.

This part, at least, is easy! Everything is “pay by session”; no packages or pre-payment to worry about. 

[PeterPan]

9 minutes ago, Expat_Mama_Shelli said:

Most families here consist of parents both working 60+ hrs a week, and kids who are in class all day with tutoring and then heavy homework loads each evening, I have a feeling this is where the issues with “compliance” would come in.

That makes a lot of sense! Working with you may be a real treat for him!

10 minutes ago, Expat_Mama_Shelli said:

Because of this, there are relatively few private providers (compared to population) for any specialty. There simply isn’t enough need to support them from populations that can afford care. 

That's sad. :(

Well keep us posted on how it goes! That's really good that he had OT a year ago. Did it resolve the issues you went in for? It's funny that she identified the reflex but didn't treat. The integration for spinal galant, iirc, was stroking the back. We used a lot of textures and did it 3-4 times a day. There are probably more ways.

[Shoes+Ships+SealingWax]

2 minutes ago, PeterPan said:

That makes a lot of sense! Working with you may be a real treat for him!

That's sad. 😞

Well keep us posted on how it goes! That's really good that he had OT a year ago. Did it resolve the issues you went in for? It's funny that she identified the reflex but didn't treat. The integration for spinal galant, iirc, was stroking the back. We used a lot of textures and did it 3-4 times a day. There are probably more ways.

The stark financial dichotomy here is indeed very sad - and humbling, as someone who grew up in poverty myself. 

We were able to see some progress in the time he was in OT, but we dropped because we simply couldn’t afford it anymore. Weekly sessions were running us nearly $700/mo 😩She focused primarily on his sensory-seeking behaviors while we were there because they were the most disruptive / problematic. We were only able to attend for a few months. 

[Terabith]

We are VT failures.  We were using the spread out, go once a month and did work at home diligently approach due to distance.  We were driving two hours each way for it.  He usually utilized the once a week approach but modified for us because of distance.  

It was a complete, utter failure.  We didn’t have convergence issues, and he wasn’t doing reflexes.  I had never heard of them at the time.  He had us doing some phonemic awareness stuff (say a word and change a sound), which my kid absolutely couldn’t do.  I thought well, it’s targeting weaknesses, so that is good.  But she couldn’t do it at all, and there was no real way to modify.  In retrospect, I don’t know what that had to do with vision.  

She developed full on ptsd from it.  Five years later she still can’t stand a metronome.  We got zero improvement.  He measured no improvement on his tests.  So when after six or seven months, we said, “Look.  We’ve had no improvement and this is very expensive and stressful, so we are going to quit.”   His response was, “If you quit, she will wind up as a juvenile delinquent.”   

I still think good VT could be helpful for her, but the stress was so bad, there’s no do over.  And it’s possible that if we had done it the traditional way, we might have had good results. I don’t know.  Stress with progress is different than stress with no progress. 

I would work on reflexes before starting VT, preferably with an OT covered by insurance.  

[PeterPan]

2 minutes ago, Terabith said:

I still think good VT could be helpful for her, but the stress was so bad, there’s no do over.  And it’s possible that if we had done it the traditional way, we might have had good results. I don’t know.  Stress with progress is different than stress with no progress. 

One, have you looked into some trauma bodywork therapies to help her release that stress? It's absolutely a thing.

Two, bringing in metronome and phonological processing is going beyond VT. So, like you say, he was trying to do too much with a person whose starting point was way farther back. And yeah, when the kid gets burnt like that (about anything, a church, a teacher, anything) it colors the next time you need that service. Btdt with my ds, sigh. But yes, that's a huge danger having someone who has bits of knowledge but no clue how to work with the most challenging situations. If it's any consolation, you're not the only one and her needs probably were significantly more complex than any client he had ever had. No, he could not have helped her, even with more frequent sessions. He was not ready to work with her because he didn't know enough about her larger neurological context to be ready to help her. It was him, not just the number of sessions. More would have just made the burnout happen faster. You did the right thing by listening and discontinuing.

 

[Terabith]

3 minutes ago, PeterPan said:

One, have you looked into some trauma bodywork therapies to help her release that stress? It's absolutely a thing.

 

 

No, I haven’t.  I need to look into that, for me, too.  Probably won’t get to it till summer though.  

She’s about to turn 14, and I am realizing we’ve really come to the end of what I can remediate.  She’s not willing to anymore.  We finished Wilson, and her spelling is sooo much better.  I think spellcheck will work for her now.  Her English teacher gave a spelling test and she got an F on it, because she only spelled one word correctly.  But I put it on the refrigerator because I am so stinking proud of her.  The words she spelled wrong were SO CLOSE!  And they were hard, too.  Words like heterochromatic, and she left out the h in chromatic.  Big deal!  She’s going to keep working with that tutor on algebra concepts, because I want to get her through algebra in eighth grade.  My logic is in our system, the smart (which really means well behaved kids) all take it in middle school.  (Actually most of them take it in seventh.). So the only option to take algebra at the high school is standard, non honors, and in our school district, those classes are chaos and full of behavior issues.  (Our school system is high poverty, 80% free lunch, etc.).  In those classes, she would shut down.  So we need to do algebra next year.  And I want to keep the connection with the tutor who gets and adores her going.  

I hadn’t thought about her being too complex for that optometrist, but that makes sense.  She has a lot of labels, but I no longer think of her as all that complex because she’s doing so well.  She’s really coping and functioning just fine, but it’s been a long road.  I have no idea what the future holds (driving, college, employment), but right now things are easy.  With her.  My NT kid is melting down emotionally and we are trying to figure out what to do there, but it’s a whole other issue.  

[Shoes+Ships+SealingWax]

Got DS’ reading glasses & had our first session today.

We have several versions of 3 distinct exercises. He’s asked us to work on each one for 10min a day (not back-to-back) & otherwise continue reading as usual, just with the reading glasses. 

Of the exercises he did today DS enjoyed one, was “meh” about one, and really resisted one. For the last, the DO moved him down a level so he could feel more successful. He included tools for both that level and the harder level in our “took kit”.

We’ll be coming back every 2-3wks for new exercises & tools. 

[PeterPan]

Was there something for the STNR? 

Given how much he's been burnt with non-compliance, he may be feeling you out to see what you'll do. So he has you using flippers or something? 

[Shoes+Ships+SealingWax]

34 minutes ago, PeterPan said:

Was there something for the STNR? 

Given how much he's been burnt with non-compliance, he may be feeling you out to see what you'll do. So he has you using flippers or something? 

Nothing yet for the STNR. I found some stretches / exercises online that I can do with him at home on my own, though. Despite my best efforts (arriving early, having a snack, free playing for a bit) DS was really squirrely while we were there. I tend to forget that he gets this way in new situations & it catches me off guard because while he’s always “full on” he is much more mellow by comparison at home. 

The first task we were given was the flippers. DS haaaated this! Glasses being a reality and not just theoretical is not going over well, so glasses + colour lenses + the flippers making the task challenging = resistant kiddo. The DO backed up and gave us an easier level flipper so he can work his way up with less frustration. We have both so we can adjust difficulty whenever he’s ready. 

The next was a tracking activity where he scans for individual underlined numbers / letters in a row of text, reading them off as quickly and accurately as possible. He managed to do this in 30sec with 2 errors (skipped one line). Goal is 20sec with 0 errors. If he masters the task we also have sheets with several letters grouped together (asr tyn drl zvq). DS didn’t mind this, as it was straightforward and he felt confident it was achievable. 

The final task was the one DS enjoyed most. It’s a series of mazes, and he has to direct a pawn through the maze by telling it to turn left or right each time it hits a wall. DS loves mazes and enjoys coding, so despite being challenging this activity is right up his alley. 

[PeterPan]

Many people get headaches with their new glasses. That's a lot to adjust to new glasses AND begin using your eyes with them at the same time. Vision therapy work can cause headaches and be fatiguing as well.

I would definitely listen to feedback you get from your ds. That's probably why the eye doc is saying to do only 10 minutes at a time. You can give him ibuprofen ahead of the work if he is developing headaches or wait 2 weeks till he adjusts to the glasses before doing the assignments.

For the STNR, yes, you can even do that 3-4 times a day, the more the better. The key though is to get him to SLOW DOWN the movements and do them correctly. if he does them really fast and doesn't do them correctly, they still do no good. In the videos, notice the details like where the head is, etc. You'll see improvement in just a matter of weeks probably as the reflex begins to integrate. I would test the reflexes yourself to see if there are others that got missed.

As far as that behavior at the office, it might improve some with getting the STNR integrated. Some of my ds' behaviors did tone down with our reflex work. Also there are the usual explanations like ADHD and anxiety and the interventions you'd expect (working on self-awareness and self-regulation with programs like Zones of Regulation and Kelly Mahler's new Interoception stuff). Both are good, but Zones of Reg is a pretty easy starting point. Can he tell you how he feels or distinguish when he's tired vs hungry vs. a headache? Sometimes ADHD meds will help that too self-monitoring too. So if he CAN tell what he's feeling, it's a matter of giving him the check-ins and prompts and helping him learn to make good choices based on that info. But if he doesn't know how his body is feeling, even when you do a body scan and check in, then you'd back up farther and work on interoception. But yeah, you can do a lot of problem-solving just by planting those seeds of check-ins and strategies. (blue zone so let's do this, yellow zone so let's do such and such, etc.)

If he's not monitoring how he feels, then he can get overwhelmed if he's getting headaches, etc. It's just something to watch for.

[Shoes+Ships+SealingWax]

We’re not sure if he has ADHD or is high-energy with low impulse control but still within the normal range. The OT was able to confirm that he was sensory-seeking, but of course wasn’t qualified to give us an answer re: an attention deficit. Due to his age and the cost we’re trying to meet whatever other needs he may have & see what resolves before pursuing a full Psych Assessment.

Yes, he can distinguish between types of discomfort. In familiar environments he is able to identify when he’s overstimulated and can manage it himself by asking to have a quiet moment away... but when he’s in a new situation & there’s lots of interesting things he wants to get into or he has an “audience” then it’s far harder. He has to WANT to calm himself - he likes the wild excitement feeling, even though he knows it gets him into trouble.

Edited March 14, 2019 by Expat_Mama_Shelli

[PeterPan]

Sounds like a good plan to finish your other therapies and then do psych evals. Yeah, they're expensive. Around here, the OTs, peds, etc. have the same screening tool the psych uses (the BRIEF for executive function). The ped also has the Quotient which is a computerized sustained attention and impulsivity test. Tests like that are funny. if you put my ds on the Quotient, he's totally within the normal range for boys. But if you take him to a psych or anyone who works with kids, they're like WOW is his body off the charts and they're begging you to go ask the ped for meds, lol. Now the ped will override that test, but it is really interesting. My ds is labeled at this time ADHD-C (combined type), which I think is pretty common with his autism presentation and sensory issues. In fact the ped put it that way, that his sensory was driving behaviors. My dd has more of an ADHD-Inattentive presentation, and her stuff shows up on the computer tests easily. 

Yes, that's really good if he can identify what his body is feeling. You can look into Zones of Regulation, which will help him create a toolbox of strategies and realize what the goal is. It will give him gradations in his level of control and it's not going to say that his exuberance is good/bad, only that he can monitor how in-control he is and make choices. It's a very meta-cognitive approach and he might like it. It would also separate it a bit from what mom wants, what mom is saying to do, which can help. We use metacognitive approaches with my ds as much as possible, teaching him to understand and make choices. So good materials like Zones can help, also picture books and expanding that understanding and noticing. Like we're reading Little House and talking about Laura's need to move. There are some really good books like                                             All Dogs Have ADHD                                       and                                             All Birds Have Anxiety                                       

I think it would be interesting to see what happens to his symptoms when you get that STNR integrated. Could calm down somewhat, and it's disappointing the eye doc gave you squat for it. The neonatal/primitive/infant reflexes like that are used for birthing, learning to feed/crawl/walk, and they should all be integrated by around 5. Vestibular reflexes and vision reflexes then do their thing. So when you have retained infant reflexes, you've glitched the process. That's why you're supposed to be doing them before VT. You'll still make progress, but it can be slower, more painful, not stick, etc. Some docs will do the reflex work concurrently. I'm just saying I would not be rolling with this doc because he's already admitted he has issues. Pyramid of Potential has a video (can you download it?) with all the tests and exercises. The PT we used was using their content. Worked well for us. I would be doing those correctly (not rushing or sloppy) 3-4 times a day. I'm googling this and some sites are saying 10X a day, haha. 

So as far as the exercises, I'm seeing a cat thing, which we did, yes. The videos are showing head parallel to the ground in the up position. I can't remember how we did it, because there are a couple, one where you lift the head and the other you don't. Another exercise I'm seeing online says 3 point crawl. We didn't *crawl* like that but I think we did something with opposite sides. So like on all fours arm forward, opposite leg out, balance, switch. Also, she had us do back stroking, because that was the test for STNR. I'd take different brushes (soft nail brush, stiff natural bristle hair brush, scratchy fingers, ice cubes, wash cloth, etc.) and apply them to his back. That part was really awful when we started, but frankly that's how you know it's the issue. ;)

Again, if the reflex is retained, he may be sloppy or really fast when he starts. I had to slow it down, make little chants, count, physically put my hands on him to slow him down, etc. It got better pretty quickly though. Personally, I wouldn't hesitate to pause the VT work a week or two if he's at all uncomfortable and work on the STNR first. You can then do things like play catch while he runs in a circle, having him stand and read letters from the chart while you push him, checking his vestibular/righting reflexes, etc. Like if he's sitting in a chair and you push him gently, does his head stay upright or do is just go over with him? That's what I was saying that you integrate the primitive/early reflexes, then do vestibular, then do vision.

[PeterPan]

4 hours ago, Expat_Mama_Shelli said:

he likes the wild excitement feeling,

I have a lot of talks with my ds about fright/flight and cortisol levels and what his body is doing.