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I know there's been a little talk about ILs and other listening therapies here, but not much...I'm trying to figure out whether there's actually a sound basis behind these types of systems, or if it's just a lot of hype and good marketing. There's so little information out there, and most of what I've seen looks like it's sponsored by ILs. We have a little money to spend at the moment, and I've been wondering about this for awhile, but I do wonder whether it's worth the (not insubstantial) cost and (also not insubstantial) effort.

My daughter has ADHD, her biggest issue at this point is emotional regulation (and social skills.) ILs claims they can help with both, but I'm finding that a bit hard to believe. Thanks for any insight any of you may have!

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It pains me to say this but we did 80 hours if ILS at home and with a therapist. It was a lot of exercises and I combined it with retained reflexes.

I did not notice a lot of improved attention or academic improvment.

I love the company. I love the system but honestly I would not recommend it. I have heard it is very effective for sensory processing and I admit I did notice improvement in that regard. 

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Ugh, thanks. Yeah, she has tactile SPD, just a little and only with clothes, but she doesn't have any issue with noises, so I don't see how ILs could help with this. They make so many claims, and the practitioner I spoke with was so enthusiastic about the program, but of course she was also trying to sell it...

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It looks wacky to me but I only look at it as it would pertain to my son. I think it looks like yet another expensive autism treatment that doesn’t do much but get parents excited for a few months.  

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Ok, this is just a suggestion, but what you could do is do some things that *do* have evidence behind them and then see where you're at. It's not like you have to blow your whole wad, now that you have some money. I haven't heard pricing yet on the new Interoception curriculum coming out, but it has research about to be published and you can actually get the awareness to improve, the self-regulation to improve, and the application to others. I'm guessing you're talking under $300 for the curriculum. Might only be $80. I really don't know. But you could put in 8-10 weeks and then decide. Should be out in January.

She's already on meds. Are the retained reflexes integrated? If they aren't, that's another thing to do.

If you look at the broader picture, like when professionals are trying to work on self-awareness issues stemming from interoceptive deficits and the resulting social problems, what are they using? Like work backward here. There's tons being done with social skills and sensory. ILS is a niche thing, and frankly I've NEVER had an OT suggest it to us, not any. I must run in the wrong circles, but I've been through scads of them and not a single one mentioned it. 

And yes, the OT field is replete with car salesman ship. (I got trained on this and will sell it to you, it's a deal, and you'll love it!) You can't get your money back and you can't get your time back and they suffer no consequences. So if you start with something evidence-based and hit the majority of it, then you see what's left, kwim? We did some sound therapy using altered tracks. The OT threw it in for free. It's not like we can't do things just to see. But to blow your wad on them? 

3 hours ago, nature girl said:

They make so many claims,

Think about this. If they make enough vague, general claims, something is bound to happen during that time. Just the interaction the dc has with the therapist and the compliance work is likely to improve behavior. They talk about this with therapies, debating it was the therapy or the fact that there was increased interaction that made the difference.

Also, fwiw, you can take the hours in her day too high. How is she now for ability to cope with load? If you add this therapy, what will you toss?

Edited by PeterPan
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Thanks, this is probably what I needed to hear...

We're not doing any other therapies right now, but she's in school so time is reasonably limited. What is the interception program? It doesn't sound familiar to me. (Let me know if it's been discussed here before, if so I can do a search.)

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https://www.mahlerautism.com/interoception
Start here. She has a book                                  Interoception: The Eighth Sensory System                             and the assessment forms                                  Interoception Assessment Forms                            

I did the assessment with my ds (and myself!) and it was FASCINATING. Learned a ton, and it gave us a great baseline for our work. 

The book is a conceptual overview with some practical, but since then she has had 3 years testing materials in various research settings. The results are about to be published. She's doing 1 and 2 day trainings occasionally, if you can get to any of them, and she's developing online training materials. I HIGHLY recommend the trainings in any form you can get. 

Mahler is such a hoot, because she does the whole workshop, says her materials will be out soon (January!) to make it easy to implement, and then she's like but yeah I already told you everything and you can just do it yourselves and don't be afraid! So I was like fine, let's go! We've been doing amazing things working through the concepts in the way she explains. There's a lot of flexibility there to bring in your ideas and your knowledge of your dd and your creativity. The materials will be great too.

I think the printed curriculum is supposed to be out in January. I think she's on schedule for that. I don't know which *week* in January, but things seem on-track right now. You could spend your time reading whatever she has online, seeing if she has uploaded training videos yet (I don't know), etc. 

Also, do you know you can do Play Project training online? I haven't done it, but I'm just saying you can. https://www.playproject.org/online-learning/  and although I wouldn't pay for RDI training ($1600, ouch), doing a one-time eval might be enlightening and help you make leaps on the topic of joint attention. 

Did you say someone has done We Thinkers or other Social Thinking stuff with her?

Right now Mahler and Kuypers are doing workshops back to back, with the idea that we're going to bump their interoception (self-awareness) and then carry that over to self-regulation. And interoception has in phase 3 the application to other people, meaning it's directly hitting your social concerns. And it's based in developing the insula, the part of the brain that runs self-awareness. So think about that. You can research about the insula and its affect on interoception and decide for yourself whether ILS is likely to affect that or not. 

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Here is the thing with therapies sometimes.

One, parents can be really excited when they are starting something new.  They can say how good it is after barely starting it.  They can think they are noticing a big difference at first.  At this point they may talk a lot about how great it is.  

Then some time passes and maybe it seems like it hasn’t made such a big difference, but then it doesn’t come up in conversation the same way.

So — the person doing the therapy hears a lot of raves from parents who have only been for a few sessions.  This will give a great impression.

And then — later on when the parent maybe thinks it didn’t do much, not many parents are ever going to say that to the therapist.  Especially when the therapist is a nice person.

Two, a lot of times there are multiple therapies being done at the same time.

But the parent has a favorite.  Either the therapist has a great rapport with parents, or else it is the therapy that most appeals to the parent for a philosophical reason.  Or, parents will prefer the program that promises the most because that is what they want to hear.  

 

 

 

 

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Our OT is going to do some interoceptive work starting in January based on Mahler's research, along with some other specific goals, and we are going to do the Focus Program as well. Now, we are not having to purchase it, and we haven't started yet, but aside from gas money we'll literally spend $50 a month on therapy so agreeing to the Focus program for that is not a difficult decision for us (and my husband is really interested in it based on some brain research reading he's done for work).

This week we are completing the Safe and Sound Protocol from iLs (talk about a pain to implement with 4 kids at home!) and I would have said yesterday that there is not much change, except that I've noticed 2 new things in the last 12 hours that have me seriously scratching my head and doing a happy dance. Last night he was able to tell me exactly what it was going on in his head "when I close my eyes I see this in my head" and he described it really well, and said "and it makes me scared, so I am too afraid to be in my bed right now". He was able to tell me exactly what scared him using great visualization (I'll take credit for teaching him how to use visualization strategies from the Visualization and Verbalization program, but then he told me that it made him scared! Call me crazy but that in itself is HUGE for him.  Even my husband looked at me and said, "that was amazing!" and this morning he was able to ask for help twice, properly, unprompted and before he got frustrated. Usually he just gets frustrated and doesn't think to ask for help before he gets to the point of exploding and throwing whatever it is in my lap and demanding I do it.

He also, now that I think about it, watched the nutcracker ballet yesterday afternoon and I watched him closely as he looked very concerned with the king rat fight scene, but after it was over he climbed on my lap for some closeness, and when I asked him it he was afraid of the rats, he took a deep breath, and said "it's over now." got down, and went back to his seat to watch. 

So we've changed nothing but the iLs safe and sound protocol. It might be small things and it might be antidotal, but I feel like I'm seeing positive movement.

Would I purchase it if I had to? Not sure, but for our situation, it is cost effective so we're doing it.

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10 hours ago, PeterPan said:

Mahler is such a hoot, because she does the whole workshop, says her materials will be out soon (January!) to make it easy to implement, and then she's like but yeah I already told you everything and you can just do it yourselves and don't be afraid! So I was like fine, let's go! We've been doing amazing things working through the concepts in the way she explains. There's a lot of flexibility there to bring in your ideas and your knowledge of your dd and your creativity. The materials will be great too.

I just finished her book and am currently outlining ideas from her stuff to go with a unit on the human body that we'll do for science, pairing learning about the various body parts/systems with the interoceptive ideas from the book and anything else I can think of to add in as well. My goal is to make it flexible to pull out each topic as I need to in order to match/complement what they are working on at OT for any given week.

I honestly was wondering how much more benefit the curriculum would be for the extra cost, since it seems so simple to implement as it is. 

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This is a pet peeve of mine as a parent with kids in public school.....

I have things happen where I will have just had a meeting (for whatever reason, in the past usually behavior issues) and I will know from that that someone at school will have just been working on a certain specific thing.

Then another parent will say there has just been progress in that certain specific thing, and it must be from there private therapy thing.  

And I will just think.... hmmmm.... they’ve just been working on that at school and several kids in the class have been making similar gains????!!!!!

So there are anecdotes and there are anecdotes.  

I take anecdotes more seriously when the person knows everything their child does and the rationale etc.

Like for V/V ———— they will do that in reading comprehension with my son (or they will do similar techniques).  But another parent won’t realize that for whatever reason.  Or won’t connect the dots.  

And then they might say the visualization came from the private therapy, and not even realize that it connects with what kids are doing in reading comprehension at school.

I have just had things like this happen over and over.  

But anyway — that is great news, Mamashark, I am glad you are seeing this progress!  And husband buy-in is a good thing, it is so good.  I do not see 100% eye-to-eye with my husband but it is worth not agreeing 100% to agree overall and have buy-in. 

Not to say you don’t, but for me, I will do something I think is maybe pointless if it doesn’t cause any problem and it is supportive of my husband and increasing our joint buy-in.  I think it is so, so important and worthwhile.  

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I think this was a lower need for my son, but I can say something helpful he did.

He would go to the playground with the therapist and run around.  Then when he was “aroused” she would stop him and point out how he was breathing heavily, heart beating fast, sweaty, etc.  Then she would have him stand still and point out as she saw his breathing slow down, his heart beat slow down, etc.  She would have him take deep breaths and notice the difference between deep low breaths and short shallow breaths, and that he could control that.  

His goal was to be able to transition from active play to being very calm, fairly quickly.  He was having trouble with the expectation to be called in from recess and then walk in a line into school.  

Anyway — that was helpful for him.  He practiced a lot of times, going from active play to standing still and taking deep, slow breaths. 

It also helps a lot because a lot of activities are set up like “run back and forth, now wait your turn, now run back and forth, now wait your turn, now go to the next station with your group.”  That is just how a lot of things are set up, that kids have to go from “run and jump” to “stand fairly still and get in line or stand in a little group.”  It opens up a lot of opportunities to be able to do that.  

But I have seen it transfer more that he is able to take a deep breath and calm himself down.  

Anyway with physical arousal you can have a child run or play tag or something and they will naturally have physical arousal and then have to stand still as part of the game.  My son could not really play tag because he couldn’t really stand still after running, when he was doing this.  

Anyway — I had a positive experience with that.  It’s my anecdote 😉

 

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Thanks, all, this is so interesting. So the interoception work is basically mindfulness, but broken down to be less nebulous. I'm buying the book...We did mindfulness for awhile, but she got very resistant to it so I stopped. Maybe I can find a way to make this more fun, I don't know.

Our big issue now is we've been seeing aggression, which is new. Her emotions are completely out of control, I don't know if it's hormonal (I think I may be starting to see body changes already, ugh...) or if we've just gotten into a bad cycle, but there are times that it's BAD. Like she'll pull me back onto her foot and then beat me up because I hurt her. (She beats up furniture too when she bumps into it...) So I actually was looking into SSP (so interesting that you've tried it Mamashark!) talked to a provider about it, and she said it's not really helpful for ADHD, unless they have mysophonia or some sort of trauma background, but recommended Focus instead. And that's how I got here...

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I bought the book "What To Do When Your Temper Flares" trying to address the aggression, and this morning she was all in my face, grabbing off my glasses, I got away from her and firmly told her to give my glasses back and she quoted, "The only person making you angry is YOU." Yeah, this book is going to come back to haunt me for awhile.

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39 minutes ago, mamashark said:

I just finished her book and am currently outlining ideas from her stuff to go with a unit on the human body that we'll do for science, pairing learning about the various body parts/systems with the interoceptive ideas from the book and anything else I can think of to add in as well. My goal is to make it flexible to pull out each topic as I need to in order to match/complement what they are working on at OT for any given week.

I honestly was wondering how much more benefit the curriculum would be for the extra cost, since it seems so simple to implement as it is. 

Well I can tell you she's going to have 150 pages of pdfs. You sound like me, and you're like ok I get this, I can do this too! So let's see. I can tell you that the training workshop, which was explaining how she implemented all this and showing videos, DID leap forward my thinking IMMENSELY. It was little subtle things sometimes.

You're not going to start your study till January anyway, right? And what systems are you going through? One of the important things, if you're going to work on interoception, is outside in. So you're going to want to start with systems that they can most easily recognize and then go to the ones that are harder to see. So like the bowels, that's a huge ask, a real challenge for interoception. They're going to do better with bowels if they start with easier stuff like skin, hands, feet, mouth, etc. and get that insula development and get stronger at it.

Also, I think your study might be slower-paced than what the interoception work might need to be. She has 18 systems and she has people going through them ALL in 10 weeks. What I found with my ds was that it was nice to be a bit fluid and say ok now he has a USE for noticing this part so let's go ahead and start scanning it. Does that make sense? The scans should result in data that allows the person to make changes in behavior. So we're not randomly or even systematically working through the body. You actually want to be saying what does he need, if he could notice this, what would it change... I would customize it like that.

So maybe consider keeping your body study (which sounds fun!!) running parallel, not having it tied tightly to the interoception work or holding the interoception work back, and keep it fun but maybe trim enough that it doesn't result in burnout or fatigue. So run it 2-3 days a week, do your activities, read, whatever you were thinking, but then for your interoception work that's going to be 3-4 times a day doing body scans, doing explorations. We spent HOURS exploring things like temperature. My ds didn't have the *language* to communicate with the body scans, so we had to develop language and put meaning to those words. Sometimes our ideas backfired, hehe! We made glacier water with salt and compared it to ice water and he TOTALLY FLIPPED OUT because it was so cold. :biggrin:

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8 minutes ago, nature girl said:

So I actually was looking into SSP (so interesting that you've tried it Mamashark!) talked to a provider about it, and she said it's not really helpful for ADHD, unless they have mysophonia or some sort of trauma background, but recommended Focus instead. And that's how I got here...

Our provider recommended it due to high anxiety levels. A lot of the behaviors we see are related to the anxiety and each piece of that puzzle that we get put together has shown bits of improvement in behavior/compliance. Really, the only thing that I'm not convinced has helped is the methyl-folate that the Dr. recommended but we didn't do the genetic testing (insurance wouldn't pay) to verify that it was necessary, so there's that. (Although the methylated B vitamins are basically a miracle vitamin for me which is why we tried it for him.)

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7 minutes ago, nature girl said:

I bought the book "What To Do When Your Temper Flares" trying to address the aggression, and this morning she was all in my face, grabbing off my glasses, I got away from her and firmly told her to give my glasses back and she quoted, "The only person making you angry is YOU." Yeah, this book is going to come back to haunt me for awhile.

Sounds like she needs more tools to be ready for that. Is she doing anything for sensory during this to calm herself? You've said this happens, and it definitely does with my ds, that talking about hard things is stressful. That means you need to bring in things to calm her stress.

I was really horrified when we did the Interoception Assessment, because my ds was NOT recognizing when his body was feeling a certain way and NOT recognizing his triggers. So literally, all the talk therapy (when you feel this way, do this), was WORTHLESS, utterly worthless, because he couldn't tell when he felt that way to apply it.

Interoception is the key that unlocks all this. The curriculum is coming in January.

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1 minute ago, mamashark said:

Our provider recommended it due to high anxiety levels. A lot of the behaviors we see are related to the anxiety and each piece of that puzzle that we get put together has shown bits of improvement in behavior/compliance. Really, the only thing that I'm not convinced has helped is the methyl-folate that the Dr. recommended but we didn't do the genetic testing (insurance wouldn't pay) to verify that it was necessary, so there's that. (Although the methylated B vitamins are basically a miracle vitamin for me which is why we tried it for him.)

That's absurd and even dangerous to take a methylated vitamin without genetics, mercy. The increased methyls could be aggravating the anxiety. Kids could have a very different profile from you.

Is 23andme still running deals?

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Ok, you're telling me they told you to do $$$ non-evidence based therapies but don't bother with a $50 genetics test to find the real problem?

I'm cool with weird therapies, alternative stuff, sure. But I'm just saying if the anxiety is caused by methylation defects or TPH2 issues, then how is listening to sounds solving the real problem? 

Edited by PeterPan
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Just now, PeterPan said:

Ok, you're telling me they told you to do $$$ non-evidence based therapies but don't bother with a $50 genetics test to find the real problem?

nah, two different providers. The genetics bit, they honestly told me was a couple hundred dollars, so that's interesting info that I can look into now... and I am not doing the methyl vit. anymore for him because it's not worth time/$ to do something without results. 

The OT is recommending the iLs, and that isn't expensive for us because they aren't making us buy it. Just using it as an at home part to complement what they are doing in the office. 

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2 hours ago, Lecka said:

parents can be really excited when they are starting something new.

This is true, and it's true I went and got trained and have been talking a lot about it. On the other hand, I'm doing it to MYSELF and am seeing what it's doing for ME, and people are now noticing changes in ds. He now dresses for the weather. He now hugs appropriately. Those are clear, direct connections to the work we did on temperature and pressure. So if I stop raving about it, it will probably be that I've gotten so used to him dressing for the weather and hugging appropriately that it has slipped my awareness. Those are durable, real changes flowing directly from the work we did.

The claims of Mahler, on how the three phases should work (body awareness, putting those inputs into emotional awareness, and then applying it to others) seems reasonable. And since the stuff everyone HAD been trying to do with my ds was DANGEROUS and STRESSING HIM OUT and not really making change anyway, I figure I'm gonna walk down a path that actually MAKES SENSE.

What doesn't make sense is thinking that if you pay $$$$$$$ something will change. Doesn't matter if it's OT or psych counseling or therapy systems or Cogmed or whatever. The $$$$$$ seems to make little difference and the logic of where it steps into the person's deficits and how it makes things start clicking seems to matter more. I think we have to use our heads. I think we have to question PhDs and people with swanky degrees and avoid vague claims that prey on our wish to help our kids. The therapy needs to MAKE SENSE. It needs to fit in and be pivotal at unlocking something that is glitched. It should stand up to our scrutiny and we should not doubt our own ability to understand whether things MAKE SENSE.

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4 minutes ago, mamashark said:

The OT is recommending the iLs, and that isn't expensive for us because they aren't making us buy it. Just using it as an at home part to complement what they are doing in the office. 

If they let you do it for free, sure do it! Free is always good. :biggrin: 

Ok, I do something weird with my ds, brushing his feet each morning. I started about 2 years ago on the advice of a PT to work on integrating reflexes, and it was so calming to him that I just continued. So if his reflexes for that are integrated, why am I doing it now? Is it good sensory input? Maybe. Is it simply the time spent with me, getting reconnected? Maybe. Is it that it's compliance work first thing and getting his brain on track to comply? Probably, lol. To me, doesn't matter, because for right now it costs me nothing and seems to have good benefit for WHATEVER reason. 

I think some therapies are like that, sort of vague, not with a lot behind them, but if they're not costing you anything and you're getting some gain from them, gain is good. I think interaction is always good. 

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30 minutes ago, nature girl said:

Thanks, all, this is so interesting. So the interoception work is basically mindfulness, but broken down to be less nebulous. I'm buying the book...We did mindfulness for awhile, but she got very resistant to it so I stopped. Maybe I can find a way to make this more fun, I don't know.

Our big issue now is we've been seeing aggression, which is new. Her emotions are completely out of control, I don't know if it's hormonal (I think I may be starting to see body changes already, ugh...) or if we've just gotten into a bad cycle, but there are times that it's BAD. Like she'll pull me back onto her foot and then beat me up because I hurt her. (She beats up furniture too when she bumps into it...) So I actually was looking into SSP (so interesting that you've tried it Mamashark!) talked to a provider about it, and she said it's not really helpful for ADHD, unless they have mysophonia or some sort of trauma background, but recommended Focus instead. And that's how I got here...

Oh dear. And you ran her genetics and found some methylation defects, yes? I can't remember. So her meds are methyl donors. If she was tolerating them before and then the aggression started, did something change? Another poster figured out she had started some fruit that was high in methyls and the behaviors ramped up. It would be something to watch.

You've got a serious problem brewing. No, the Interoception *curriculum* is going to go way beyond mindfulness. It's going to have 18 systems, 3 phases, lots of hands-on activities, 150 pages of downloadables. It's a BIG DEAL. Mahler is also going to develop some online training. I haven't heard when that will be up for people to pay for access to, but it would definitely be worth the money. I think as parents we need that click on *why* there's a gap between the thing that should have helped (mindfulness) and they're ability to APPLY it. Mahler's work is going to totally change that. 

We can write her and see. I don't know what the schedule is for the online training. I think you'd eat it up. I don't know what the cost will be.

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52 minutes ago, Lecka said:

He would go to the playground with the therapist and run around.  Then when he was “aroused” she would stop him and point out how he was breathing heavily, heart beating fast, sweaty, etc.

Is he capable of monitoring and noticing for himself, or he needs the prompt? I don't know if Mahler has data broken down by IQs to say well some populations can learn to self-monitor and be self-aware and others can't. Mahler's work is predicated on developing the insula and helping the person be able to do it FOR THEMSELVES. 

So i's the right stuff, but it's a mindset shift. And Mahler's work they're actually doing in group therapy sessions, setting up games, etc. It's meant to be very fun, a discovery process with the person figures out for himself what is happening (phase 1) and what it means (phase 2). They'll slow it down that much or compact the phases in other kids. Just depends on what the person is ready for. But eventually you'd like him to be able to self-monitor. She talks a lot about being careful NOT to tell people what they're thinking, what they're feeling, what is happening. The person actually needs to stop, engage his brain, and feel it FOR HIMSELF. He might not be ready to PROBLEM SOLVE based on that data or do the phase 2 even and say what the hypostatic or affective emotion is, but he could at least have the prompt to feel it for himself rather than being told. 

If he doesn't stop and feel it for himself, then is he just memorizing situations? He's supposed to infer all this? Where did that insula development happen to help him become self-aware? The training is new. Zones of Reg inadvertently encouraged people to TELL kids what they were thinking and feeling. You should have heard the sighs when Mahler talked about this at the training. It's like it all clicked in the minds of everyone in the room simultaneously. That's why they're now doing Interoception training workshops before Zones, paired, back to back, so people realize the flow. 

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I think the new Interoception program makes sense that it will be good and high in quality.

But I think it’s too soon to know what kind of results people have and what issues it will help the most.  

It’s too soon to say if it will turn out to be a first-step program for many, a first-step program for a few, more of a niche program for a few, if it will be seen as some thing to do before or after (or at the same time) as other things.  

But — I do think the premise makes sense and it sounds like the quality is high.  It sounds like it is coming from people who have relevant experience.  

But just for me, I have heard this level of excitement about the tapping points thing, and I definitely think that is niche to a few kids who specifically will do really well with it.  

But I get this excited about things I think look like they are really targeted to things that are close to my heart, too, and when they make sense, and the person developing them seems really legitimate.  

 

 

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10 minutes ago, PeterPan said:

Is he capable of monitoring and noticing for himself, or he needs the prompt? I don't know if Mahler has data broken down by IQs to say well some populations can learn to self-monitor and be self-aware and others can't. Mahler's work is predicated on developing the insula and helping the person be able to do it FOR THEMSELVES. 

So i's the right stuff, but it's a mindset shift. And Mahler's work they're actually doing in group therapy sessions, setting up games, etc. It's meant to be very fun, a discovery process with the person figures out for himself what is happening (phase 1) and what it means (phase 2). They'll slow it down that much or compact the phases in other kids. Just depends on what the person is ready for. But eventually you'd like him to be able to self-monitor. She talks a lot about being careful NOT to tell people what they're thinking, what they're feeling, what is happening. The person actually needs to stop, engage his brain, and feel it FOR HIMSELF. He might not be ready to PROBLEM SOLVE based on that data or do the phase 2 even and say what the hypostatic or affective emotion is, but he could at least have the prompt to feel it for himself rather than being told. 

If he doesn't stop and feel it for himself, then is he just memorizing situations? He's supposed to infer all this? Where did that insula development happen to help him become self-aware? The training is new. Zones of Reg inadvertently encouraged people to TELL kids what they were thinking and feeling. You should have heard the sighs when Mahler talked about this at the training. It's like it all clicked in the minds of everyone in the room simultaneously. That's why they're now doing Interoception training workshops before Zones, paired, back to back, so people realize the flow. 

Yes, he self-monitors.  

But his profile is really different.  He does not have anxiety and he doesn’t have emotional regulation issues.  Like — those are not things that are in the top 5 as issues for him.  Maybe not on the top 10.  

For some kids those are top 3 kinds of things, and that is just not his profile.

He did have problems with calming down after physical arousal from exertion........

But truthfully I have only read about the connection from physical arousal to anxiety or unrealized emotional reactions.  I think it is really interesting and good and I have heard really interesting things.  I have heard a lot of positives.

But it seems to be more for kids who have a different profile from my son.

More for kids where anxiety or emotional regulation or identifying their emotional states are top priorities. 

That is just not my son’s situation.  We need him to work on social skills and language.  But he is a pretty chill kid and he has surprisingly good understanding of non-verbals.  He has surprisingly good ability to observe what others are doing and figure out what he should do.  Like — those are relative strengths for him.  For other kids those things can be relative weaknesses. 

 

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Okay, the thing I mentioned, he did 4-5 years ago at this point.  He has got pretty good self-monitoring.  Now — expectations are probably a lower for him, which makes a difference.  He has got good self-monitoring relative to what is expected of him.  

It hasn’t been an ongoing thing, and — it is because he just doesn’t have the anxiety, he doesn’t have the emotional reactions, the way some kids do where those are top concerns.  

But it’s not like I ask those kids’ moms what they did for vocabulary too much, when a lot of them just have good vocabulary because that is how they are.  I don’t ask their advice about reading when their kids learned to read easily or were even self-taught readers. 

But at the same time — it could come up for my son as he gets older.  That is seeming less likely as time goes on, but I have been told that if he gains in his social level to some point, they see some kids develop anxiety as they become more aware socially.  But he is old enough now I think that may not happen with him, but I have never heard of there is an upper age limit for that.  But my impression was it was one of those “by 2nd or 3rd grade” things, so I don’t know.  

Edit:  I was pretty interested in this a few years ago when I had heard my son might develop issues like this if his social awareness increased.  But it seems like his social awareness hasn’t increased, after all.  So it seems like it just may not really pertain here.  

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5 hours ago, PeterPan said:

Oh dear. And you ran her genetics and found some methylation defects, yes? I can't remember. So her meds are methyl donors. If she was tolerating them before and then the aggression started, did something change? Another poster figured out she had started some fruit that was high in methyls and the behaviors ramped up. It would be something to watch.

You've got a serious problem brewing. No, the Interoception *curriculum* is going to go way beyond mindfulness. It's going to have 18 systems, 3 phases, lots of hands-on activities, 150 pages of downloadables. It's a BIG DEAL. Mahler is also going to develop some online training. I haven't heard when that will be up for people to pay for access to, but it would definitely be worth the money. I think as parents we need that click on *why* there's a gap between the thing that should have helped (mindfulness) and they're ability to APPLY it. Mahler's work is going to totally change that. 

We can write her and see. I don't know what the schedule is for the online training. I think you'd eat it up. I don't know what the cost will be.


Yes, she's compound heterozygous. But her B's were all fine, so I assumed she's methylating properly.

The tinteroception does fascinate me, although she seems to be feeling things inside her accurately, registers hunger and fullness and thirst...but maybe can't register the anger or hurt feelings or whatever. She HATES talking about feelings, so obviously they're making her uncomfortable, I haven't been able to figure out what's behind that but it's been going on ever since she was little, she gets so agitated and upset. Maybe she realizes she feels things more strongly than others and feels somehow ashamed, even though I've assured her multiple times that we all have big emotions inside. I don't know, but it's made therapy a disaster for her...So I'm not sure how she'd handle the interoception work, I'll have to get more of a sense what it involves when it comes out.

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16 hours ago, nature girl said:


Yes, she's compound heterozygous. But her B's were all fine, so I assumed she's methylating properly.

The tinteroception does fascinate me, although she seems to be feeling things inside her accurately, registers hunger and fullness and thirst...but maybe can't register the anger or hurt feelings or whatever. She HATES talking about feelings, so obviously they're making her uncomfortable, I haven't been able to figure out what's behind that but it's been going on ever since she was little, she gets so agitated and upset. Maybe she realizes she feels things more strongly than others and feels somehow ashamed, even though I've assured her multiple times that we all have big emotions inside. I don't know, but it's made therapy a disaster for her...So I'm not sure how she'd handle the interoception work, I'll have to get more of a sense what it involves when it comes out.

 

My son hates discussing emotions and feelings too. The thing that makes me so hopeful about the interoception work is that it doesn't start with "I feel tense and my face is hot and and my stomach is in a knot, I must be angry, let's try these strategies to calm down". It starts (at least in the book, I'm curious to see how the curriculum adds to this) at the level where you notice how different textures feel on your skin. Trying to feel your heart beat after activity and trying to make it go slower, that kind of thing. Just noticing things. So it's neutral. no emotion in it at first. Which means I can help my son get in touch with his body and how he's feeling things, without discussing emotions.

One of the big things we've been trying to shift in our house for the past, I don't know, 6 months or more, is that there are no "bad emotions". They are what they are. Some are such that we don't like the way we feel, but that doesn't make it "bad" because I think he was connecting a "bad" emotion with "being bad" and that was worsening his anxiety. I had to actually ask his previous OT to stop using a game she tried with him where they literally classified emotions as good or bad and moved along a game board and I can't remember the point of the game now, but the language was terrible and he would shut down so entirely that would end the session. A psychologist helped us figure out the label of "bad" emotions being the issue.

The thing is, at least for my situation, recognizing emotions does have to come second to really understanding how your body feels, and I think trying to hide or shy away from emotions makes it really difficult to feel what your body is doing. I know for myself, when I struggled with some anxiety and depression for a couple years, by the time I sought help, I didn't realize that the TMJ in my jaw was 100% tension. I was just tense ALL THE TIME and never felt it. Different strategies and meds helped to reduce that at times, and I started to wonder why some things impacted the TMJ and others didn't... Now I use my jaw as a barometer for my stress levels. Is it locked or popping or smooth? I had to work for several weeks to learn how to feel the tension in my jaw so that I could relax it. I literally couldn't feel tension there. Now I can. Feeling tension there isn't going to help me not experience stress or anxiety, but it's the first step to helping me cope with various stressers in life better. Now I can feel that tension and take steps to stop, relax, take a few deep breaths, take a new perspective on what's going on, take a break, whatever is necessary in the moment.

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Yes, the hypostatic and affective emotions are understood once they build the really solid foundation of sensory awareness. With *some* kids she'll run the phase 1 and phase 2 together, but with most no they're running it separately. With ds, separately. It's safer separately. She also points out that slow is better, that we want to give them TIME to make these connections and figure it out and generalize it across settings and begin to do it for themselves. This is not a rushed process but a multi-year thing, going from sensory to emotions to application, building the language, building the ability self-advocate with the info, building it to independence where they can take over. 

So it's a simple concept for sensory-typical people but she had to break it down and find all the glitches.

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Circling back to the ILS system I wanted to come back and write a bit more about it. The concept of filtered music was created by Dr. Alfred Tomatis to improve auditory reception in language. The centers are very popular in Europe and you can read about them here . In my son's situation, he was diagnosed with Auditory processing disorder and had very weak processing in his left ear so he would be the perfect candidate for this kind of therapy.  We tested him in the auditory booth before and the following year after completing ILS and had no improvement. That being said since finishing the ILS I purchased the Iphone app for the tomatis method ( it is around 200) and continue to use the bone conduction headphones for certain things. Overall I did not notice the benefit in the CAPD testing that followed.  There were a few improvements in verbal speach and in expressing ideas. My son is also a shockingly good speller considering his diagnosis. He began singing lyrics after our treatment and he was far less emotional about things. There were lasting improvements  I noticed  but compared to the amount of time we spent I am just not sure it was where I should have been putting my efforts. If there were a child with more sensory issues I would recomend this program.

Then I really started reading about working memory and auditory processing. At this point I knew that my son could not remember information easily and could not retain all the verbal information he was receiving at school. 

I need to go back and read more about your kiddo but it doesn't sound like you are going to get a lot of cooperation doing therapy at home 3 times a week and at the therapist once a week. There have been alot of threads about Interactive metronome and the timing of the brain, Fast Forword and the processing of speach and applying auditory attention, Cogmed and hearbuilder Auditory memory for building working memory which significantly helps with attention. I have used Many of these techniques with my son and had very good results. I tell you this because I do believe that therapy helps. Fast forword was key for us, something I wish I had explored for Auditory processing years ago.  I think it is important to tune into your intuition and consider going to a behavior counselor. Being proactive is what works the most but unfortunately all of these companies are trying to make money and yet there is not good research for many of the treatments. IT is easier and cheaper if you have good cooperation at home but that is not always possible. I have been lucky in that my son is inattentive but cooperative and motivated by getting prizes. I have been doing some form of teaching therapy at home since 1st grade ( he is now in 5th). I hope that you can find some help for your situation. 

 

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I have typed about our change in food nutrition elsewhere but I include it here if anyone is interested.  You might have read about this in another thread but I am noticing the most improvements since I changed my diet for Cancer. I had watched "Forks over knives" and after that I applied those principals and eating programs to my own life. I am only making one meal so I make a whole foods meal from rice, beans, potatoes, sweet potatoes, squash and lots of veggies .My kiddos are eating green smoothies, eating green vegetables and Broccoli sprouts ( cheap and easy to make) I serve small servings of meat on the side for them because I am not ready to totally abandon a reasonably good source of vitamin B12. I myself give my kids a very small serving of methlyated B vitamins a day ( Thorne multivitamin with methylated B) But I do not do this every day. I have to say the greens and the healthy food significantly helped me BUT even half adopting my diet has done some pretty great things for my son in the attention and emotional regulation area. I had removed Dairy , fructose and introduced a lot of Greens. you can see other posts I have for that but if I had some spare money and ambition I would start there FIRST. For myself my mental well being has significantly improved. I was able to get off of effexor and ambien and I feel a sence of better calmness and well being. If I could go back I would have taken my son off of dairy far sooner and switched to a whole foods diet with meat on the side years and years ago. I nocited after Halloween he was a crying mess and sick with sinus infections. This has led me to really help him get rid of the Sugar and corn syrup. We still are not there but there is significant progress. In my own life some effects I noticed in 5 weeks ( My cholesterol dropped 50 points and I was able to start going off of those meds) after about 9 weeks my gut biome noticeably improved.I am around four months in and I can say that I have noticed enough improvements to be sold on this way of eating. I had such severe short-term memory loss from chemo that I would have to pull my car over because I forgot where I was going. I often ( like 15-25 times a day) walk into another room to get something and can't remember what it was. A few weeks ago I felt like my brain was "turning on" It isn't 100 percent what it was but the improvement is life changing. Academically my memory is coming back and my life skills are improving. The area I noticed the most improvement would be in coping skills, emotional regulation, improved sleep quality and mental processing.  Four months ago I was in a hole at the bottom looking out at my life and this food has turned me around. It will take a few months for me to try to get my kiddos to eat this way and to be able to notice the effects but I wanted to share that now in hopes that mabye might benefit. Its a pain to change the way everyone eats but I am telling you it is costing far less and is probably about the same effort as all the home therapy I have implemented at home.  If you try one thing see if you can get rid of the milk and sugar . Add a green smoothie everyday with kale ( its in the same family as Broccoli) or spinach ( in the same family as leafy greens and lettuce) Luckily my kiddos love the Broccoli sprouts and eat them by the handfuls for snacks and dinner. They are dirt cheap and easy easy to make. They have something like 20 times the amount of sulphorosane compared to regular broccoli so you are getting a diet packed in good nutrition. My goal is to eventually get a pound of vegetables and whole fruits in my kiddos everyday along with small amounts of  lean meat ( I am not sold on veganizing that out of my kiddos because of the B12, even though I am 100% plant based at this point.  If anyone is interested in cookbooks or support or information feel free to pm me and I can share more about our experience along the way. It isn't an all or nothing situation. I am noticing improvements in both my kids with regards to emotional regulation simply by removing process foods, overt sugars and  especially diary. Then replacing bad food with better food and serving greens. 

Edited by exercise_guru
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Thanks so much for sharing your experiences, Exercise Guru! We eat very cleanly, few processed foods, but I have DD on a pretty high protein diet, since it's recommended for ADHD, so I'm not sure how much meat I'd be able to cut out. (We don't eat any red meat, only chicken/turkey and fish, as well as eggs and cheese.) Do you get protein primarily from grains/nuts? I kept DD dairy (and gluten) free for 2 years, and didn't see any changes, but she was eating meat and eggs at that time.

And I'd love a cookbook recommendation, thank you!

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