what results did you have from retained reflexes work?

[caedmyn]

Wondering how often people actually notice a difference from retained reflex work and how substantial any change has been.  I know some here have had good results, but...DS10 supposedly integrated his Moro reflex a year or so ago and I couldn't tell that anything changed with him after doing that.  I'm feeling a bit cynical about OT right now and am not willing to put in the time to do the exercises if they're not likely to help anyway.

[Rosie_0801]

When ds' mouth reflexes were strong, he was much fussier in his eating and a lot more sensitive to noise than when they were more integrated.

[PeterPan]

The work has usually been very clear, not voodoo or vague. So doing the exercise exacerbates the symptoms (for my ds) and then as the reflex integrates the symptoms drop, boom. 

Some of the reflexes we continued doing for several months after the reflex integrated, because if we dropped the symptoms returned. And the changes with us were dramatic. He went from jumping on my back constantly, his body just in this constant, feral state of stress and hyperactivity, to calm, in the room, not jumping on me. Like one month. It took us a couple months just to get him to let us do the reflex work. Once he let us, it was THAT DRAMATIC. And Kbutton met my ds before the work and she can say, haha. She was like oh my do you realize what you are putting up with, lol. And it changed in ONE MONTH. Boom.

Those were the big reflexes like spinal galant where the changes were huge. Then we had smaller reflexes like one in the hands that I kind of innovated on and got change with. We had another with finger touches. He used to chew a lot and once we did the hand brushing and finger touches the chewing stopped. And that too was really dramatic, like he's chewing, we start, and within a month it's just GONE. Hasn't come back either. All that mouthing and chewing. 

So for us, the issue was making the time and doing them zealously. I know some people do them less, like once a day, only with the practitioner. Not here. My ds was extremely hard to work with, basically a tasmanian devil. We worked on the reflexes 3-4 times a day. I would turn on a movie and he'd just watch for 15-20 minutes while I worked on him. He could hardly tolerate the input, so that's how he distracted himself. That's also how you could tell we were getting change, because he could tolerate the work without the tv, with maybe just talking.

Isn't Moro one of the first reflexes? I wouldn't consider that a stopping point, because you're wanting to see if all the other reflexes are now integrated. But no, this shouldn't be like a year later. It should be boom obvious or else maybe what you were doing either wasn't needed or wasn't effective. Did the tasks get easier or more tolerable?

When we first started, we had an OT do RMT. She had been to trainings but didn't really know what she was doing. I can laugh now. If the OT is reading the poster and saying here, this is what it says, well that's your clue they aren't gonna nail it.

We were referred by a counselor to a PT who was kicking but with retained reflexes, and the PT doesn't normally work with ASD at all but just had it as this side thing she knew. She was using the Pyramid of Potential dvd tests and exercises. You could buy that video and see how far you get. It's way less than even one OT appointment. We did maybe 3 appts with her, just one a month.  I'm with you that OTs are the endless pit and not always making a huge difference. When you're paying for it yourself (which you are), it's the questions you ask. I've dropped it tentatively for this year, because 40 minutes each way is just a huge commitment. We actually made better progress on the target problems when *I* finally figured out what to do. It's always you. 

[Heathermomster]

DS worked with an OT during 7th grade for about 5 weeks, and the spinal galant, ATNR, and STNR reflexes were not integrated.  He performed exercises at home and IM, but I never felt good about the OT.  In 10th grade, a friend recommended a ped PT who identified the ATNR and the STNR, left side weakness, postural issues, balance, and bilateral coordination issues.  DS worked with her for about 5 weeks performing agility, balance, and weight training exercises.  He also performed exercises daily at home.  Once he completed the ped PT work, his gait and posture changed, he started sitting straight at a desk without extending his legs, and he learned to swim.  The ped PT work was life changing, and I wish we had found her sooner.

Edited August 14, 2019 by Heathermomster

[PeterPan]

22 minutes ago, Heathermomster said:

he started sitting straight at a desk

I just want to highlight for op how DIRECT the correlation is. The boy had reflexes that are known to affect the dc's ability to sit in a chair comfortably, and he did the reflex integration exercises and the ability to sit improved. 

[kbutton]

Connective tissue disorders can directly influence how well reflexes integrate. For kids with CTD, it's like a revolving door--every time they grow, you have to tweak stuff. Even still, my kiddo with CTD gained a lot of coordination and sense of bodily awareness. He had auditory processing problems, some of which got better (he's getting updated testing, so more might be better now too). Specifically, his ability to hear speech in noise got better. He would be functionally deaf in places like Chipotle or the loud gym at church prior to doing Moro work in VT. It was expected that he would have auditory sensitivities given his other auditory issues. After Moro started getting better, he developed those sensitivities--so not really a fix but a step in the process; it's pretty bad when something that is supposed to be "off" is held back by a reflex, lol! 

Sometimes when things are bad enough, the stuff that develops next is "good" but not what you'd think--like some kids don't get dizzy, and they SHOULD. My older son was like that.

Moro is hard. What works for one kid with Moro might not for another, but then something else works. Truly. So, your OT could be great, but you might need something different than what they are offering. 

Duck and pigeon walks are pretty typical for Moro--those helped my son a lot. https://www.youtube.com/results?search_query=duck+and+pigeon+walk&page=&utm_source=opensearch

My older kiddo didn't show obvious signs of Moro, but he had to have some explicit work on bilateral stuff, so I think he was on the edge of integrating, and he just wasn't all the way there. (that was VT). He had more issues with startle stuff that we worked on in OT, and that might have been a different manifestation of Moro than my younger son had. That was fixed with the Wilbarger Brushing Protocol, which made things a lot worse before making them dramatically better. If we hadn't fixed that, I don't think my son would have been a very functional human. https://www.nationalautismresources.com/the-wilbarger-protocol-brushing-therapy-for-sensory-integration/  His symptoms pre-brushing were to basically put anyone that approached him from behind on the ground, and he usually had no idea he was doing it--he wouldn't remember afterward. He also did a lot of voluntarily slamming himself into walls when overstimulated (crashing from the side, etc.). He also would run his hands along the wall--at the grocery store, this looked like making a domino game out of the shampoo bottles he walked down the aisle, long past an age where it was even close to acceptable to have this sort of thing happening. Brushing fixed all of that.

So, two (likely) Moro tales, both very different. 

[caedmyn]

22 hours ago, PeterPan said:

I just want to highlight for op how DIRECT the correlation is. The boy had reflexes that are known to affect the dc's ability to sit in a chair comfortably, and he did the reflex integration exercises and the ability to sit improved. 

The problem is that correlation doesn't equal causation, and there's no way to separate out what, if anything, was due to reflex work when they were also working on all the other things mentioned, which certainly would have affected his ability to sit in a chair. 

22 hours ago, Heathermomster said:

DS worked with an OT during 7th grade for about 5 weeks, and the spinal galant, ATNR, and STNR reflexes were not integrated.  He performed exercises at home and IM, but I never felt good about the OT.  In 10th grade, a friend recommended a ped PT who identified the ATNR and the STNR, left side weakness, postural issues, balance, and bilateral coordination issues.  DS worked with her for about 5 weeks performing agility, balance, and weight training exercises.  He also performed exercises daily at home.  Once he completed the ped PT work, his gait and posture changed, he started sitting straight at a desk without extending his legs, and he learned to swim.  The ped PT work was life changing, and I wish we had found her sooner.

 

Edited August 15, 2019 by caedmyn

[caedmyn]

I'm just...skeptical at this point since doing some research recently and learning that retained reflex integration for kids with ASD/ADHD/sensory issues/etc is not actually evidence based.  I read stuff like this https://www.missjaimeot.com/primitive-reflexes-research/ and am left shaking my head because the "research that supports the idea of working to integrate retained primitive reflexes" that this post lists does nothing of the sort.  The first two studies listed don't even address the question of whether exercises to integrate retained reflexes actually have any therapeutic benefit for ASD or ADHD kids.  The case study on an infant with a severe genetic disorder isn't remotely applicable to ASD or ADHD kids as far as I can see.  And the last one...she couldn't possibly have actually read it.  It's a literature review (I believe that's the correct term) and both the authors of the review and every organization that serves ASD kids that they found that had reviewed the studies found that there was insufficient evidence that that particular method of integrating reflexes was effective because all the studies were low quality and biased due to the creator of the method being an author of the studies.  The paper even cites the statement of a judge who reviewed the studies because some parents had sued to force the treatments to be covered--the judge's statement was that there was NO evidence that it was effective.  IMO the OT profession is really doing itself a disservice by publishing blog posts like this.

I'd already purchased the Pyramid of Potential video before I learned all this, and I guess there are enough positive stories here that I'm willing to give it a try with my kids for 30 days, but I'm frustrated that the two OTs that we paid OOP for didn't bother to tell me that retained reflex integration is considered experimental and not evidence-based. 

 

[PeterPan]

45 minutes ago, caedmyn said:

have any therapeutic benefit for ASD or ADHD kids. 

It's fine to say it's not a treatment for ADHD. It's absurd to say the reflexes don't exist and that integrating them doesn't make a difference. Yes, OT is a completely voodoo field charging tons of money and promising very vague things. 

46 minutes ago, caedmyn said:

the two OTs that we paid OOP for didn't bother to tell me that retained reflex integration is considered experimental and not evidence-based. 

So when I was paying $100+ an hour for OT for my dd, I wasn't happy and quit, just like you're unhappy and quit. With my ds I have a state disability scholarship to pay it, and I get enough benefit to have done OT on and off for several years.

As far as evidence-based, you may not totally understand what the means. There's a big movement right now in the speech therapy field to say things ought to be evidence-based. The thing is, if there's not money to be made on it, there might not be studies. And frankly many people designing studies aren't designing them WELL, so that even when you find studies sometimes they're predictably useless. There's also the idea that practitioners have hands-on experience that tells them something will be useful where there isn't yet enough research to say definitively what to do. EVEN IN the communities that are driving hard on EBP=evidence-based practice, reality is they recognize the need for this experience-driven practice. It's BOTH, not one or the other. Get in those threads, and those are the debates they're having.

So for instance the PROMPT that I drove 2 1/2 hours each way for for 8 years is not considered EBP. There are only a few studies and the technique had been around less than 10 years when I started. There's some work on MRI studies, a dab. It's an exceptionally hard therapy approach to study because of the range of qualifications of the practitioners, range of severity of diagnoses, etc. In my state there are still only a few (less than 5) certified practitioners, and up until a year ago the majority of them were at ONE PRACTICE, the one we went to. Everywhere else, anyone else in the state doing it was largely unqualified to do what they were doing. So how do you make a reasonable study when the SLPs aren't bothering to get certified in it but are claiming they can do it with only 1/3 of the training and no certification??? You can't.

So then you get crap like what I've seen on SLP lists where the heavily EBP people are like well this other free thing is awesome and they equate some free tripe with what someone takes literally YEARS to learn how to do well. Sheer stupidity.

So be angry that you spent a ton of money that you didn't have to blow. Be angry that it's a voodoo field that promises vague things and doesn't really deliver. But that doesn't mean there's no benefit to ANY of it. The reflexes are a known gig. They study them with aging because the reflexes reemerge as you age. There's no dispute there. Even the sitting thing is a direct thing. The reflexes have direct purposes (helping the infant to suckle, to learn to crawl, to learn to walk, to turn in the birth canal, etc.). There's no dispute about these things. What IS reasonable to question is any sort of vague implication that doing the work will somehow cure/improve ADHD. That's pretty much poppycock. 

The reflex exercises will improve any symptoms being caused by the retained reflex. And it's usually very direct, very obvious. Yes, since you have the PoP video you might as well at least run the tests. The tests are good and her exercises work. You have it so it's not costing you anything more. For my dc (both ds and dd) it was very obvious where the reflex work was uncomfortable and provoking the symptoms, ie doing something, and it was very obvious when the exercises began to be more comfortable. There was never any uncertainty as to whether it was useful to do them. In general, if the dc can do the exercise with completely correct form and complete comfort, he doesn't need to do it. 

[PeterPan]

1 hour ago, caedmyn said:

The problem is that correlation doesn't equal causation, and there's no way to separate out what, if anything, was due to reflex work when they were also working on all the other things mentioned, which certainly would have affected his ability to sit in a chair. 

I'm not sure what you're saying. We weren't doing any other bodywork therapies at the time. My ds was completely unsafe to work with, like a feral animal. 

Happily, the women here are smart enough to realize what they were doing and what changed. 

This is like VT, where some VT docs make these vague, wonderful claims. Reality is, if you have the problem, improving it will improve the symptoms caused by the problem. Sometimes you get some side benefits, like VT working on EF even though its ostensibly about eyes. So then they're like see, VT improves how your kid cleans his room! And no, it's that you bumped his EF because you were bringing things to target EF into the VT. It's not mysterious at all. 

Look, I've put a lot of my money into therapies and a lot of our state scholarship into therapies, so I hear you on the disenchantment. Keep going and you'll realize SLPs are undertrained. Did you know OTs are no longer being told told stop with a masters, that now phd is considered the new norm for qualification? But I had an OT with a phd who was the WORST OT I'VE EVER USED. Seriously. Actually incompetent and disinterested in the field. With a phd!! Also we had an OT who got her degree by CORRESPONDENCE. I KID YOU NOT. I was SO frustrated when I heard that. Who in the world does that??? Who offers that??? Like no wonder the quality of service was so poor. And when you have under-trained people trying to big things, they aren't prepared. These fields with OT and SLP are HUGE. They could end up work with stroke victims, in hospitals, with the elderly, with babies, on feeding. It's just crazy. And even a phd doesn't mean you actually know anything. All the real training is happening after grad school when these people go to workshops and take CEUs. 

To me it's like used car salesman. They go to a workshop, learn this or that, and are like wow I can advertise and sell this! It's total barkers. And do they have any real way to sift out and compare? Are there studies to be the evidence to guide them? It's really scant. I think they rely on what is popular, what they're being told is good. 

The good thing is, almost anything they can get trained on, you can get trained on. So if you learn something with a dvd and that gets you a few months of work and some progress, that's a step. I think it's good with OT to go in and out. Use them, toss them, use them later if you know what you need.

Because you're paying, this is extra painful. I did with my dd, so I get it. If you could drag up my old, old posts from then (she was 11-ish, so 9 years ago), you'd see I was as frustrated as you are. If someone else was paying the bill, it wouldn't be so bad. Hopefully you learned some things and got some steps. I've been through scads of OTs the last how many years, and I've never met ANY that was like the perfect, ultimate, knows everything. Seriously. Like even not about just one field like autism. They learn a little about this or a little about that, then they get swamped with their caseload and their family life and they just get in a groove. Sometimes their employer or clinic will train them on some things. But to say they're cutting edge and keeping up with new research, they don't get paid to do that, not in a clinic. They're cramming kids through. They're juggling work and family lives. They just get in a groove. It's why changing OTs when you're in a rut or have maxed one out can help.

Did you do the tests? It would be interesting to see what your kids are even flagging on. Doesn't cost you anything at this point since you have the video.

[Heathermomster]

When DS was 10th grade, I took him to the ped PT to be evaluated.  The PT had advanced training, and she was clearly eager to help children with motor difficulty.  She never tried to sell me anything, and I actively sought her out.  She interviewed and asked a series of health questions.  Afterwards, she evaluated my son and pointed out the motor issues that she was seeing.  She then developed an exercise plan with a clear timeline.  We committed to 2 hours per week at the office plus about 40 min at 5 times per week of exercise at home.  Within 2.5 weeks of the 4 week plan, the benefits were obvious.

There is no autism in my family, but there are generational, diagnosed motor function issues such SPD, dyspraxia, and ADHD.  My son is dysgraphic, but the ped PT believes he has DCD.   I do too because of son’s EF issues.  Whatever the case, DS performed multiple exercises so any one of them could have integrated the retained reflexes that affected the ATNR/STNR.  I really don’t care which exercise helped the most.  All I know is that he benefited from the efforts, and the ped PT was highly competent. 

The bottom line is this: if you think OT work for reflex integration is an ineffective waste of money, don’t do it.  The OT should be able to give you clear and testable measures to determine whether the exercises are helping your child.  

 

 

Edited August 15, 2019 by Heathermomster

[Rosie_0801]

Sometimes I wonder whether autism isn't partly reflexes that won't integrate properly. Anyway, my ds was autistic and there were obvious improvements when I could get the reflexes to reduce. It wasn't something I was going to throw money at, because he was an uncooperative little beggar and there was no way I would have got value for the limited amounts of money I had to throw.

[kbutton]

10 hours ago, PeterPan said:

It's fine to say it's not a treatment for ADHD. It's absurd to say the reflexes don't exist and that integrating them doesn't make a difference.

Postural reflexes don't stabilize/work well if the primitive reflexes are not integrated. I bet there is research on that. Sometimes the research you want is something you have to find from another angle. 

Consider a PT (pediatric, developmental--there are specialties) if the OT doesn't work. I didn't immediately seek out OT--we started with VT because had a definite evidence-based problem there. The VT didn't claim to work on reflexes--Moro is literally the only one they tested for. I didn't expect to have VT change anything except vision. So to me, that's going into reflex work about as blind as possible with as few expectations as possible, and we were blown away. Other people saw it too--with my older son, he'd struggled to progress in swimming lessons--one arm would be a Nemo fin when he would swim, and the other would be fine. If he really concentrated, he could get the Nemo fin to make bigger movements, but the other arm would become the Nemo fin instead. After VT, his swim teachers were all, "Have you been practicing? We'd like you to think about swim team..." 

The Cleveland Clinic has a thriving pediatric PT/OT clinic--I don't think they'd bother if it didn't help, lol! I've heard their practitioners speak twice at different events. 

[caedmyn]

On 8/14/2019 at 8:28 PM, PeterPan said:

So be angry that you spent a ton of money that you didn't have to blow. Be angry that it's a voodoo field that promises vague things and doesn't really deliver. But that doesn't mean there's no benefit to ANY of it. The reflexes are a known gig. They study them with aging because the reflexes reemerge as you age. There's no dispute there. Even the sitting thing is a direct thing. The reflexes have direct purposes (helping the infant to suckle, to learn to crawl, to learn to walk, to turn in the birth canal, etc.). There's no dispute about these things. What IS reasonable to question is any sort of vague implication that doing the work will somehow cure/improve ADHD. That's pretty much poppycock. 

The reflex exercises will improve any symptoms being caused by the retained reflex. And it's usually very direct, very obvious. Yes, since you have the PoP video you might as well at least run the tests. The tests are good and her exercises work. You have it so it's not costing you anything more. For my dc (both ds and dd) it was very obvious where the reflex work was uncomfortable and provoking the symptoms, ie doing something, and it was very obvious when the exercises began to be more comfortable. There was never any uncertainty as to whether it was useful to do them. In general, if the dc can do the exercise with completely correct form and complete comfort, he doesn't need to do it. 

The other thing that makes me question it is that there doesn't seem to be any consistency in how these exercises are supposed to be done.  The exercises the OT gave us for ATNR and STNR are different from the exercises for those for those two on the Pyramids of Potential DVD.  When I've searched on Youtube there are at least a couple more variations for each.  How can a person really trust that any given random exercise that claims to be for reflex integration actually has any value?

[caedmyn]

On 8/14/2019 at 8:43 PM, PeterPan said:

I'm not sure what you're saying. We weren't doing any other bodywork therapies at the time. My ds was completely unsafe to work with, like a feral animal. 

 

I think I wasn't clear because the quotes were in the wrong order.  I was responding to your post about Heathermomster's post about the issues her son was diagnosed with by a PT.  The point I was trying to make was, why does "retained reflex integration" get the credit for his improvement in sitting when (unless I'm totally misunderstand her post) there were a number of issues that would likely have caused difficulty sitting properly and they were doing exercises to work on those issues at the same time they were doing retained reflex exercises. 

[kbutton]

33 minutes ago, caedmyn said:

I think I wasn't clear because the quotes were in the wrong order.  I was responding to your post about Heathermomster's post about the issues her son was diagnosed with by a PT.  The point I was trying to make was, why does "retained reflex integration" get the credit for his improvement in sitting when (unless I'm totally misunderstand her post) there were a number of issues that would likely have caused difficulty sitting properly and they were doing exercises to work on those issues at the same time they were doing retained reflex exercises. 

I forgot this thing that happened with our reflex work, but it's relevant to this question.

So, my younger son "couldn't do sit-ups" for a long time (now he's not supposed to, but that's a whole different track). He was like a turtle on his back--stranded. We thought it was low tone because he has low tone. One of the first things that spontaneously got fixed after VT (explicit Moro work, some work on STNR and ATNR on the side) was that he could suddenly do sit-ups, but NOTHING ELSE had changed, and the timeframe between could and couldn't didn't allow for incidental exercise to have made a difference. It's like his brain couldn't tell those muscles to work without the reflex work.

It was very weird.

[Heathermomster]

No, my son absolutely had reflex issues related to sitting. There is absolutely no question about that.  Posture and left side weakness issues developed as he got older. 

OP, I really find you offensive.  If you don’t think that reflex integration exercises are worth the effort, don’t do them.  HOWEVER, don’t pick apart what I wrote.  It’s your choice to believe me or not.  As a rule, I try to answer honestly.

[caedmyn]

54 minutes ago, Heathermomster said:

No, my son absolutely had reflex issues related to sitting. There is absolutely no question about that.  Posture and left side weakness issues developed as he got older. 

OP, I really find you offensive.  If you don’t think that reflex integration exercises are worth the effort, don’t do them.  HOWEVER, don’t pick apart what I wrote.  It’s your choice to believe me or not.  As a rule, I try to answer honestly.

I see what you were saying with that additional information.  I am sorry that I offended you.  I'm not second guessing anyone's perception of what their child's reflex work accomplished, only questioning reflex integration as a whole.  It's difficult to discuss my specific questions about it without using examples.

[PeterPan]

On August 15, 2019 at 12:35 AM, Heathermomster said:

The OT should be able to give you clear and testable measures

Haha, good luck on that. PTs, yes, measurable progress. OT has always been vague promises and wanting you to keep going, keep going.

[PeterPan]

5 hours ago, caedmyn said:

The other thing that makes me question it is that there doesn't seem to be any consistency in how these exercises are supposed to be done.  The exercises the OT gave us for ATNR and STNR are different from the exercises for those for those two on the Pyramids of Potential DVD.  When I've searched on Youtube there are at least a couple more variations for each.  How can a person really trust that any given random exercise that claims to be for reflex integration actually has any value?

Now THAT is an excellent question. So here's the jist of what I can tell. The reflex development is neurological and agreed on by everyone. They develop, they happen, everyone agrees. But how to integrate them, that isn't as heavily studied. Who is going to make money on this??? Things get studied because there's money to be made. HUGE $$$ going into autism genetics because there's money in testing, money in medications. Ain't no money in reflex work. So no heavy research going on.

That takes you to innovation, therapists figuring things out the hard way. THAT'S FINE. Pyramid of Potential is therapist figuring out the hard way. There's also used car salesman therapy (people buying someone's book, going to a course, whatever). So RMT is a system some therapists will learn. There's another russian system, name slips my mind. Follow the money. The russian one has this crazy $$ training, so it's less common. RMT training maybe is cheaper and it's a bit more common.

So RMT training is VAGUE. And the dude behind it is screwed in the head. Like when you get in his top levels of training the stuff he says (per the OT I used who had done them) was SO screwed in the head you'd assume he was smoking some pretty strong stuff. So vague promises from a dude doing some serious weed, and we're shocked that the system doesn't give great results???

So yeah, I got partial improvement from RMT. Like literally one side of the body integrated for one reflex. It was stupid. And the OT wasn't stellar at implementing it even though she had been to all those levels of training. I just think the exercises were too vague. It was like 15 interchangeable things and we menu select, A, B, C or D, E, F or whatever depending on the reflex.

So the theory with PoP and I think other systems in general is that you want to be doing what the reflex provokes or sort of the inverse. Or if something provokes it, you do more of it. And it's more direct, not voodoo or vague. Like you'll KNOW the exercise is aggravating the reflex and telling the body HELLO YOU'VE USED THIS REFLEX SO PUT IT AWAY, because it will be uncomfortable, annoying, irritating, whatever to do it. Then suddenly the exercise is non-irritating and can be done easily with no discomfort and boom you realize the reflex has been put away. You provoked the reflex so much that the body figured out it had used it and was ready to put away.

Now the reflexes for twisting in birth, haha, those are kinda hard to provoke. But seriously, that's what we're talking about. And everyone's mix is different for what did/didn't get used along the way and what needs to be provoked so the body will put it away (integrate) it.

So it SHOULD be linear. It probably should be annoying or uncomfortable or otherwise obvious that you're hitting on something when you do the exercise. It's like doing reading intervention. If the kid is blazing through his phonological processing and can do the tasks, you're not going to do LIPS. You do LIPS because it's hard, because it bogs down, because it's obvious he needs it.

When you get the right exercises, it will be obvious. 

I'm really sorry your OT experience disappointed you. It is the most vague, least satisfactory field of intervention, definitely. It is the one most likely to burn your resources without resulting in a lot of gains. And I'm not anti-OT! I correspond with OTs, have used scads of them. But if you're paying yourself and money is tight, sometimes it's really hard to get to where you can say the results are worth 4-5X/hour what your dh makes. If you had endless $$$, we wouldn't be having this discussion. But the $$ drain with OT is really.

Oh, I've been through 7 OTs between my ds and dd, and technically I have another OT (#8) who is on our IEP team who hasn't seen my ds. It's a very vague field. It's why I put so much effort into figuring out the things to do for myself, because I cannot just be driving, driving, driving for these vague promises. I figure I only have to solve 1 problem, and I just research it and figure it out. At this point, when I use OTs it's usually because I like them for something else as well. Like my last one, whom we used for almost 2 years, was Hanen trained. So when he worked with her she was bringing so much more to the table. She'd work on language while in motion (being able to talk while you move), working from lists, calming strategies, handwriting, lots of things, all in one hour session. So I didn't care that she wasn't hitting well some other things I wanted, because she was still bringing some good. 

Therapies are a hard balance of time, money, distraction from other things you need to be doing. It's hard because we want them to KNOW, and by rights at $100 an hour they SHOULD KNOW! But they don't. They aren't being taught. It's all after their master's, after their schooling. Even a phd just means they did a project. The PhD OT I had was the most clueless, least productive, least useful OT of ANY I have used EVER. I kid you not. That's how little they're learning in school. And it was from a huge name, big state school here. Not podunk, not mail order. The education they're receiving is too general to allow them to do the SPECIALIZED work our kids need. That's why they end up doing workshops and junk afterward. That's why moving on could be the best thing, because you can max out the knowledge of the OT.

Edited August 16, 2019 by PeterPan

[Heathermomster]

I’m sorry for getting upset with you.  I get why you are skeptical about the reflex stuff.  

You are pushing through the weeds with at least 3 kiddos with dyslexia.  You are teaching the kids to read and that is a painful, stressful situation. Therapies feel like they never end plus VT and reading and OT/PT work are very expensive and feel like voodoo and chicken feet.  OT exercises are irritating and time consuming especially with a house full of littles and a needy child that you have to motivate. 

My major take away from the ped PT/OT experience is that any professional who tells you one exercise will solve reflex integration exercises must be inexperienced.  Son’s PT used a variety of exercises.  I asked the ped PT about some of them, and she indicated that the movements served multiple beneficial purposes.  Clearly, I didn’t press the issue, but he did a lot of balance and agility work.  

Lastly, I asked my son if there was a moment when he realized the ped PT was working.  He likened the experience to a light switch flipping.  Suddenly, things became much easier to do.  

 

 

[PeterPan]

On August 15, 2019 at 1:02 AM, Rosie_0801 said:

Sometimes I wonder whether autism isn't partly reflexes that won't integrate properly. Anyway, my ds was autistic and there were obvious improvements when I could get the reflexes to reduce. It wasn't something I was going to throw money at, because he was an uncooperative little beggar and there was no way I would have got value for the limited amounts of money I had to throw.

It is striking how common they are. 

[PeterPan]

2 minutes ago, Heathermomster said:

any professional who tells you one exercise will solve reflex integration exercises must be inexperienced.

Yeah even with PoP it's several per reflex. I'm contrasting it with RMT, which is like hey do this milkshake thing (that's what we called it, haha), and it will sorta help 18k things, snort. 

[Rosie_0801]

I think the different exercises to integrate the same reflex are a bit like using different maths programs to see if the kiddo understands the maths or has just memorised the main program's method. 

[Heathermomster]

49 minutes ago, PeterPan said:

Yeah even with PoP it's several per reflex. I'm contrasting it with RMT, which is like hey do this milkshake thing (that's what we called it, haha), and it will sorta help 18k things, snort. 

Have you turned on RMT?

[kbutton]

2 hours ago, Rosie_0801 said:

I think the different exercises to integrate the same reflex are a bit like using different maths programs to see if the kiddo understands the maths or has just memorised the main program's method. 

Nice explanation! 

[PeterPan]

3 hours ago, Heathermomster said:

Have you turned on RMT?

I'd rather put it that I'm in favor of what works. All I want is results. If some OT or whomever up the road is doing RMT and kicking butt, then that's AWESOME. The RMT sorta seemed reasonable, and we didn't get enough progress. Could be practitioner, could be the system, could be anything. 

The reflexes only take 30-45 days (for the most part) to integrate when you get the right thing going. This shouldn't be some kind of perpetual "trust me" exercise.

[kbutton]

17 hours ago, PeterPan said:

The reflexes only take 30-45 days (for the most part) to integrate when you get the right thing going. This shouldn't be some kind of perpetual "trust me" exercise.

[But if it is, you might have a connective tissue disorder...though some kids do seem to integrate but then need it again and again...] 

Yeah, that would be a red flag for a not good fit or not great practitioner. 

[PeterPan]

1 hour ago, kbutton said:

[But if it is, you might have a connective tissue disorder...though some kids do seem to integrate but then need it again and again...] 

Even then, the pattern is very clear. My dd loses her reflex integration when she's stressed, so I get it. But it's still very obvious that she works on it, progress is made, and then something happens and it peters off. 

That is contrasting with the trust me, just pay me $100 an hour and keep coming for 40 weeks, vague stuff. And when you're paying the bill yourself it really bites. 

[kbutton]

8 minutes ago, PeterPan said:

Even then, the pattern is very clear. My dd loses her reflex integration when she's stressed, so I get it. But it's still very obvious that she works on it, progress is made, and then something happens and it peters off. 

That is contrasting with the trust me, just pay me $100 an hour and keep coming for 40 weeks, vague stuff. And when you're paying the bill yourself it really bites. 

Oh, I know and totally agree. But sometimes connective tissue disorders go undiagnosed. If it's mild or doesn't have bad stuff associated with it, great. But some CTDs really need to be noticed and addressed for anything from quality of life to saving a life. 

[prairiewindmomma]

Ds could not progress in his vision therapy and in his handwriting once he hit a certain point until those reflexes integrated. Like, it was a wall. Once those integrated, he was able to completely integrate his double vision into monocular vision, to move his eyes appropriately in following a moving target, to use a pencil, and to begin to deal with his vestibular (SPD) issues.

Things de-integrated around puberty and we had to do a second round of work.  I don't understand entirely what happened (like, why), but it was the reality we dealt with.

FWIW, it was the combination of both gross motor work AND the reflexes work that took it for the reflexes to fully integrate. 

[Heathermomster]

I’ve been thinking about this more.  New neural networks form as the prim reflexes are reintegrated, and the postural reflexes take over once the prim reflexes are inhibited.  New neural networks are strengthened with use.  Son’s ped PT stressed continued bilateral type exercise after PT because movement is good for the body.  The fibers across the corpus callosum, which connect the two halves of the brain, strengthen and increase with practice.

Once a person learns to read, their fluency and comprehension increase through practice.  A reading impaired student requires more practice with reading, so I guess a motor impaired student would require more practice as well.  Novelty with books, exercise, or whatever helps keep individuals interested because practice can be a drain, and we are all familiar with that.  

Edited August 22, 2019 by Heathermomster

[WoolC]

Is the Pyramids of Potential DVD you are referring to the $200 Foundations course on the POP website or something else?  Finding a knowledgeable OT in my area is unlikely so if I can tackle it at home I’d rather. 

 

[PeterPan]

Someone else emailed the PoP lady and she had a $35 download option. Maybe search around? But yes, I think the full dvd is what the PT had.

[caedmyn]

36 minutes ago, WoolC said:

Is the Pyramids of Potential DVD you are referring to the $200 Foundations course on the POP website or something else?  Finding a knowledgeable OT in my area is unlikely so if I can tackle it at home I’d rather. 

 

Maintaining Brains Everyday has the reflexes exercises on it, and the download is $20.  That’s what I got.  

[WoolC]

1 hour ago, caedmyn said:

Maintaining Brains Everyday has the reflexes exercises on it, and the download is $20.  That’s what I got.  

 

Thank you!

[caedmyn]

There's also this which has (free) detailed videos of the exercises for different reflexes plus a schedule.  http://www.brain-sync.net/exercises/exercise-videos/moro-exercises/

[PeterPan]

2 minutes ago, caedmyn said:

videos of the exercises

Good find!!!

[caedmyn]

This is another thing that just does not make sense to me about reflex work.  The Pyramids of Potential has you doing basically one exercise for each reflex (a couple had a beginner and advanced version) for 30 days, and that's it.  It specifically says most people only need the 30 days.  The website I linked about has a progression of exercises for all but one of the reflexes, which is what the OTs we've seen wanted also, and has you doing the exercises for 12 weeks.  I don't see how it can work both ways.  If they both get good results, then I can only conclude that the longer and more involved program is overkill, big time.  Or else the shorter and simpler program really isn't getting the results it's claiming.  Yeah, there is always the "exception" kid who needs more, or less, of a given thing to get the same result, but both these programs are talking about their basic programs that they recommend for everyone.

Edited August 25, 2019 by caedmyn

[PeterPan]

Well everybody has their own exercises. We did the PoP exercises (via PT) for 45 days and got obvious integration. But it took us another 1-2 months where we were building up slowly because we couldn't even get him compliant enough to do the. And we had exercises from an OT using a different system that got partial or no improvement.

I think it's no shock when people say encouraging, optimistic things. I think work with your kid. It will be pretty obvious if it's challenging (ie. you're hitting on a problem) and improving (a few weeks). 

And we were doing them 3-4+ times a day. I don't know that the PoP lady says that. But think about it, that my ds needed more time even with more repetitions. So just roll with your kid, seems to me. 

Edited August 25, 2019 by PeterPan

[kbutton]

1 hour ago, caedmyn said:

This is another thing that just does not make sense to me about reflex work.  The Pyramids of Potential has you doing basically one exercise for each reflex (a couple had a beginner and advanced version) for 30 days, and that's it.  It specifically says most people only need the 30 days.  The website I linked about has a progression of exercises for all but one of the reflexes, which is what the OTs we've seen wanted also, and has you doing the exercises for 12 weeks.  I don't see how it can work both ways.  If they both get good results, then I can only conclude that the longer and more involved program is overkill, big time.  Or else the shorter and simpler program really isn't getting the results it's claiming.  Yeah, there is always the "exception" kid who needs more, or less, of a given thing to get the same result, but both these programs are talking about their basic programs that they recommend for everyone.

Maybe it depends on which exercises?

Moro is really hard to integrate. The progression we did is like what you linked above but started with the stick. We did it the longest. We concurrently worked on a progression that I think hit on ATNR and STNR--that went much smoother, and the only reason it took as long as it did was that they wanted it to be smooth, automatic, done with distractions, etc. I suspect some of what they introduced was intended to help establish the postural responses that take over for the retained reflex.

I do think Peter Pan is right--if something isn't easy, automatic (fluid but controlled, not something they have to do fast--they can do it slowly too), and done with distractions, then work is warranted. If they get really frustrated, maybe they need a slightly different approach, or maybe it's working. My kids would hit a really hard day or two, then suddenly, something would get a lot better. Then they were ready for the next thing in the progression. The progression itself was fairly natural--like for the ATNR/STNR stuff, you would do it on the floor, then alternate sides, etc., working up to doing something really similar but while standing up. Once a stage was working, you moved to the next one, but you'd add distractions (metronome, talking, etc.) to the first. So, you might be doing 2-3 stages at once. None of it was more than about 15 minutes per day for us.

 

[Heathermomster]

I know that programs will say to do exercises for 12 weeks, but why not periodically check for reflex integration after 4 weeks?  If they are gone awesome.  Otherwise keep going and check every two weeks until integrated.  Individuals with motor problems vary. I expect that 12 weeks would be a worst case scenario and a rough generalization to cover a broad group of individuals.

Edited August 26, 2019 by Heathermomster