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I think at least a couple of you here have used Mightier for emotional regulation. I'm strongly considering it, since emotionality is probably my ADHD daughter's biggest issue at this point. But I feel like even if she does learn how to calm herself within the games, that might not carry through to real life. She isn't willing to use the tools I've taught her when I see her escalating into frustration, I can suggest it, or say, "I see you're getting frustrated," and that brings her into a full-force explosion. She's extremely averse to discussing feelings, she says it hurts in her belly to talk about them (maybe because she's realized on her own that it's a weakness.) (This made Zones a total failure.)

It's like she almost likes those huge feelings in a way, maybe because of the increase in dopamine. So is a program showing her how to come down from the edge going to do any good if she's not motivated to use what she's learned in real life?

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Mightier is good but it's addressing a *piece* of the larger issue of interoception. What you're wanting is https://www.kelly-mahler.com/product/the-interoception-curriculum-bundle/  and it's still at intro, hot off the presses pricing. Mahler and Kuypers (Zones) are doing workshops together where they do interoception day 1, Zones day 2. Interoception work paves the way for these harder cases to be able to use the Zones.

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Hmmm...I know you've mentioned this before. But she seems like she knows when she's feeling off. She definitely knows when she's feeling regular physical sensations (hot/cold/tired/itchy), she knows when she's been able to tell me when she's feeling nervous or angry, and we've talked about how it feels inside when she's frustrated. It's just she doesn't seem to want to change those feelings, she'd rather throw something across the room (or hit) than do deep breathing or take a walk, because she gets that release of tension from throwing or hitting. And she sometimes will purposely provoke because she gets that dopamine burst...We've learned not to react at all, because it's giving her what she feels her body needs, but she sometimes escalates her actions just in an attempt to get that excitement. So I'm worried there won't be any benefit in her mind to calming herself.

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This is just me, but anything where a child says their stomach hurts, I wonder about anxiety.  

For kids who are anxious, sometimes, having "the reaction" means "I knew it, I was right to feel anxious," and it can also mean "okay, I don't feel anxious anymore."  Like -- they went ahead and HAD the reaction, they don't have to feel anxious wondering "am I going to have the reaction?"  

It can also feel better to feel "in control" than "out of control," even if ------ it is NOT great to be in control of being out of control.  It's pretty self-defeating but kids can feel that way I think.  

Anyway -- I think it sounds like maybe anxiety is playing a role.  

I don't know that that means you change anything, but it can be nicer to have a nicer mental explanation for a child's actions.    

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Thanks, Lecka, that makes a LOT of sense. She doesn't have typical anxiety, not scared of things or events, but I do think anxiety is behind the times she just flips. I'm not sure the best way to help her through that...But I'll definitely look into the book, thanks for the recommendation.

(I'm considering trying a super-low dose of lithium, to see if it helps at all with the emotionality. It's also supposed to help with anxiety.)

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Here are the assessment forms, and they have free shipping. https://www.aapcpublishing.net/interoception-assessment-forms.html  My *suspicion* is that if you gave her the assessment she'd be sorta in the middle, with some awareness (I'm at 50% btw on those forms) but not complete awareness at all the levels. It's going to examine her ability to recognize her triggers, to know the physical symptoms, and to know her calming strategies. The patterns will probably become obvious.

You've got a lot here and I'm not sure I can unpack it.

40 minutes ago, nature girl said:

But she seems like she knows when she's feeling off. She definitely knows when she's feeling regular physical sensations (hot/cold/tired/itchy),

Good

40 minutes ago, nature girl said:

she knows when she's been able to tell me when she's feeling nervous or angry

Good

40 minutes ago, nature girl said:

we've talked about how it feels inside when she's frustrated

This is when she's green zone or in the moment? I think what I'm reading later in your comments is possibly that her language is shutting down when she's stressed. The guy on FB who does the ASD discussion page just made a post exploring this idea of why language shuts down and people go to physical when they're stressed. So when she's CALM she's able to discuss all this?

42 minutes ago, nature girl said:

It's just she doesn't seem to want to change those feelings,

That's really hard for me to wrangle with, because that's an assessment of her motives, her opinions, what she would do if she were feeling her best and could act the way she WANTS to act. How does she WANT to be? I don't know. I mean, my theology tells me kids are born sinners, that we all have plenty of bent in us to do bad at any given moment, sure. But my experience tells me that kids are developmentally wired to PLEASE, especially in the younger years, that they value their bond with us, that they have a natural protectiveness that generally (barring RAD, etc.) wants to find and repair that bond so they can be safe. And I find with my ds that when he is acting his WORST usually either language is broken down or his ability to problem solve and cope has broken down. But it's very hard to believe anything good in those moments, I agree. It may even be foolish, who am I to say? I'm just teasing apart all these thoughts you have.

45 minutes ago, nature girl said:

she'd rather throw something across the room (or hit) than do deep breathing or take a walk, because she gets that release of tension from throwing or hitting.

What happens if we change that sentence to NEEDS? She "needs" to throw something, hit something, etc. to get out that tension. Then how does it read to you? Does it suddenly make more sense? And what do you do to release strong feelings? Do you curse? Drink? Go to the gym and lift weights? Go punch a speed bag? Go drive really fast on the road? Go scream at trees? Go clean and mop furiously? Adults have lots of choices in how to solve their problems and children have a lot harder time solving theirs. They have less choices and maybe haven't found the ways that work for them. 

I have a psych right now working with ds who thinks it's her gig to provoke ds with ANYTHING and then if ds gets angry, drops speech, and does something physical, she can just tell him to shut up. Oh she doesn't say "shut up" but this more manipulative "that's dangerous" and the expectation that he stifle it immediately. Well one the behavior isn't dangerous, only not preferred or a poor choice or needed to be redirected back to language. But nope, she's the adult and by gum you're gonna stifle it. And I think that's dangerous, stifling. There's safety and then there's just telling people to stop feeling, to stifle, that they're not allowed to express. 

So if she's doing that, have you practiced other options? And then will she comply with a prompt to redirect to the better choices you've practiced? If you haven't practiced the safe option, then you don't have something to redirect her to. Compliance then is will she comply with the prompt and the redirect. And that might take a lot of work. You might not have a really great choice for her yet. It took us quite a while to find great things for my ds, things he found calming, things he'd have buy-in on and want to be redirected to. And it was a really hairy stage. I do a lot of things like saying 'Let's make a safe choice" My ds finds it stress relieving to rip paper, so I'll offer him paper. Usually he just goes to a quiet/safe place we have set up. At one point he had lots of those places, lol. 

I think it's pretty normal to need to get out what she's feeling, so it's more a matter of working on safe, acceptable ways and practicing them, maybe even doing them with her. Also doing those things PROACTIVELY can help. A lot of Zones is about being proactive, about preventing red zone. So I lift weights, but I do it regularly, not only when I'm angry. When I'm angry I'm tempted to THROW weights. I lift and use the steam room and do these intense sensory things so I can reconnect, realize how I'm feeling and not get to that point.

Total aside, but have you looked into sulforophane? Ds is one whose symptoms improves when he has a fever. There are supplements now that either provide or help the body manufacture the chemical that is made during fevers, and for my ds it has been pretty good so far. I want to take the dose higher and my bottle is running out, ugh. It's out of stock too, so I'm just waiting, waiting. Anyways, I started taking it too, to see what effect it would have on me. I use the steam room regularly, which makes heat shock proteins and has a similar effect to having a fever, and I get noticeable improvement with steam rooms. Anyway, that supplement (brocolli sprouts) was really good voodoo for me and I'm bummed that I had to stop taking it.

It might be another way to approach this whole question of the internal tension she can't quite put her finger on. For me, that's what the supplement seems to improve, and I was only at half dose for adults (2 capsules a day) and it was noticeable. 

58 minutes ago, nature girl said:

We've learned not to react at all, because it's giving her what she feels her body needs, but she sometimes escalates her actions just in an attempt to get that excitement.

Excitement from you or herself? I have a tendency to amp my own level when I'm dealing with initiation humps, and it was not something I was self-aware of till recently. As you say it's a huge problem. I agree you're wise to analyze the function of the behavior and be careful how you respond. Have you read Stop That Seemingly Senseless Behavior? Yes, when my ds is elevated I stay psycho calm. If both of us lose it, what good does that do? When in doubt, I also go the other direction and cry. We're women, we know how. He's missing how his behavior is affecting me, so I'll just sit down and cry. Or we just walk away, like sorry, I can't be around you when you're like that, and I leave. Or when he was younger we'd prompt like let's go to our safe place, let's go to your closet. He used his closet for a LONG TIME for calming. The drywall looks pretty bad in there, lol. Now he's a lot more chilled, thankfully, and we really don't have a lot of issues like that. He might throw little things or he'll try to stomp your feet. The scale has gone down, with work, with the supplements, with the improvements in his own ability to calm down.

1 hour ago, nature girl said:

So I'm worried there won't be any benefit in her mind to calming herself.

Well I doubt *in the moment* she's going to have that conversation. However, on the other hand, I think there are basic concepts that do apply. 1) most people want to feel well. Does this make you feel well? Do you like how you feel? Do you like how you feel when you act that way? If my ds is very very elevated, our conversation is going to be things in that vein like you want to feel well and I want you to feel well, let's take this medication so we can feel better, we both want the same thing. Most people want to feel well and like having fun and feeling well better than being out of control and not feeling well. Now if it's a conversation loss, that's really different from all the way not feeling well. Then I'm trying to bridge communication because it's not so much that he's not feeling well as that we've lost communication to problem solve more effectively. So then it's like "Tell me what your WORST problem is right now so I can help you problem solve." Now he's 10, but those are the kinds of talks we have when the problem is language has dropped and he can't problem solve his issue effectively. He might be hangry (so hungry he's angry) AND perseverating on something AND... So then we can problem solve better when we rebuild communication and find our WORST problem to solve first. It's bringing back cognitive at a time when cognitive and language are dropping. I might say POINT to your worst problem. I want to help you and you want help, so help me help you.

2)No benefit in her mind to being calm? That's weird, but you're right that's the explicit, Social Behavior Mapping we have to make clear. Sometimes I use the "Path to A" approach, which is where you make it utterly clear. "Path A, you take this medicine, you feel better, you get a few minutes to calm down, and we get to go play Nintendo and then go to our appt. Path B, you don't take this medicine, you don't feel better, you don't calm down, and you'll stay in your room and no one will be happy because I'll have to take money from your bank to pay for the appt you missed." Sometimes it's just really clearing the air on consequences. "It's your choice, but if you choose not to go I will have to sell the Nintendo to pay for the appt you're missing." If she has a tendency to break things, you could discuss (when she's green zone) a natural consequence, like "things cost money and if you break things when you're red zone I'll have to charge you for them. These are the things you may break for free (popsicle sticks, paper, bendy snappy toys, legos, whatever) and anything else will cost you money." Then you can redirect her, at which point you're HELPING her, which she REALIZES, and it sort of changes the dynamic. They want you to be the enemy but you want to become the person that is helping them in their minds, which you can subtly shift.

So it's not so much about a consequence (because whips don't help anyone do better when they're overloaded) as about them viewing you as helping them and them wanting the help. But you do have to practice the terms, the plans ahead of time. I do a lot of practicing and preteaching with my ds. We didn't have any buy-in for a long time. The supplements have gotten him to where he can buy-in. His mind is still pretty screwed up. Like he doesn't get WHY it's not ok to call his mother names. I'll bet your dd is a lot farther along in that understanding. She probably has more social construct on mores and norms. It's almost probably deceptive, like she understands it's a bad thing to do so then why doesn't she just stop doing it!

I might be wrong, but I still am in that camp that thinks if he could he would. I see it when we raise the supports high enough, that when he CAN he does. Now people in a school setting don't like that. They just want xyz response, no matter what, irresponsive of what they could get to with enough support, whatever. And that's a style and a choice and what they want. I just find my ds' need for support to get there is high enough, and his sense of injustice or hurt when not getting that support significant enough, that the consequences of NOT giving that support are pretty high too. To him it reads as unfair, which leaves him angry. Our kids are not DUMB. They know when they were asked to do things they couldn't do. 

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42 minutes ago, nature girl said:

(I'm considering trying a super-low dose of lithium

Oh dear, maybe you can get a doc first to look over the genetics and give you more help? Lithium will tank her thyroid. There are blood tests to see if she needs it. Even in super tiny doses it's really crazy hard on the thyroid and will cause constipation, etc. as side effects. 

NOTHING I've done with ds could have been done without the supplements to stabilize his body. There is no talking through some of this stuff. His level of challenge starts with his body, continues through his body, gets processed by the mind in confusion, and comes out in language and behavior. The body is a HUGE piece. My ds was basically impossible to work with before the supplements and no amount of ABA and counseling would have humanely cut through it. We would have had to take it so far he would have just been squashed because his body was so unsafe. With his level of cognitive, he would have just had to shut down. His body was a mess. Now he's a lot calmer. He actually talks more on the brocolli sprout supplement btw. It's unbelievable. He INTERRUPTS me during read alouds!!!

In general, the methyl levels are what causes the aggression. You could find a doc to try to help you. I know you can just go to the health food store and buy lithium on your own, but I'm saying I would suggest trying to find a doc who runs genetics and specializes in ASD and harder ADHD cases and methylation issues and see what they can do for you.

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This is another thought, but if you want to try a replacement behavior instead of hitting or throwing, then taking a walk and breathing are very far from her current behavior.  

Do you think she would like something closer to hitting or throwing?  Something she is allowed to hit?  Something she is allowed to throw?  Something that would be satisfying to knock over?  

It's childish for sure, but she is a child, lol.  And it would take more self-control than what she is currently doing, but maybe less self-control than where you would like her to be long-term.  

The main drawback is it won't work if you are out somewhere or if she's at school, but if this is mainly an issue at home, it's a thought.  

If it does seem like she just wants to throw something or hit something.  If she's more looking for a reaction from you (which is natural to do because kids seek to have parents mirror their emotions) then she might not be interested in re-directing this way.  But if she really wants to throw or hit something maybe she could hit a pillow or her bed or something like that, or throw a ball at the garage door, or something.  

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https://www.crporegon.org/cms/lib/OR01928264/Centricity/Domain/45/The Cycle of Tantrums.pdf

This is for autism, but it has ideas for avoiding setting a kid off.  One of them is "just walking no talking" "The adult’s silence is important because a child with AS, HFA, or related disabilities in the rumbling stage will likely react emotively to any adult statement, misinterpreting it or rephrasing it beyond recognition."

It is only to try to prevent escalation to hitting or throwing.  It's not the most-desired of "helping the kid use a tool."  That is the best.  But if you are just setting someone off, then it's not the right time, because avoiding hitting or throwing is more important.  

If you think she does seem anxious, then I think anxiety things will probably help the most.  

But if you are really wanting to try to defuse what you have right now when it comes up, there are more options for trying to defuse, and for some times, things are going to set kids off and it's better to prevent it, in the short-term, even while in the long-term, working towards better coping skills.  

But I do think if you have a sense there's anxiety, look at parenting for anxiety.  

I can't really quite remember all of it, but I talked to a school counselor for my older son and I know I got really good suggestions that did help, but I am just not sure what exactly it was.  

I know part of it was being more accepting of him having big emotions.  It does need to be okay for kids to have big emotions.  Hitting and throwing things at a parent are not okay, though.  

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I've always felt, from your posts, that my son and your daughter share some characteristics (some, not at all of course). Anxiety is a factor for him--he was just always underlying anxious. 

We did Mightier, and it did help him. In his case, it did help raise awareness of what was going on inside and taught him how to breathe to calm (we had tried with many therapists).

He made the connection between the breathing and calming the insides.

He uses it in daily life, including settling to sleep and managing anger. He does breathing to calm at least once most days and every night.

He runs, and that helps as well. But I think the awareness he gained with Mightier was part of that in that it helped him realize the running helped him with anxiety and emotional regulation. 

Your daughter may have more awareness. Zones was a flunk for us--multiple therapists tried that sort of thing with him. I think it was that he was missing true awareness--even though he could use the right words and say he was in whatever zone. On paper, he looked like he had awareness. But, it wasn't there like it needed to be to really make progress. 

Edited by sbgrace
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50 minutes ago, sbgrace said:

I think it was that he was missing true awareness--even though he could use the right words and say he was in whatever zone. On paper, he looked like he had awareness. But, it wasn't there like it needed to be to really make progress. 

If you get the interoception awareness forms it will be interesting to see how he scores. My *guess* is he's going to score like your gut is telling you, better than 0 but maybe with more areas to work on. The assessment hits so many emotions that you may found what I found, that there were some that were really strong (more common, things we had worked on, things we had reason to hit more) and areas that were just really weak. And you might find patterns in the responses too (having the first of the three levels of response). So yeah, that would be my advice. When you're saying he's flunking out on Zones and can say it but not USE it, that's the big clue that it's interoception holding him back.

54 minutes ago, sbgrace said:

We did Mightier, and it did help him. In his case, it did help raise awareness of what was going on inside and taught him how to breathe to calm (we had tried with many therapists).

He made the connection between the breathing and calming the insides.

He uses it in daily life, including settling to sleep and managing anger. He does breathing to calm at least once most days and every night.

I LOVE this btw. This is HUGE!! 

So no, we're not talking either/or but more like subsets. Mightier was giving you a piece and the Interoception curriculum is going to take it a lot farther, with more body parts, more symptoms, more pulling it together to hit more emotions (affective and hypostatic). 

I know Kelly was doing her work in autism schools and with private clients, and I do *not* think they skewed young. From the pictures in the training sessions I was seeing ages 10+. It's not like there's some limit (too young, too old). I know she's been working with older clients (18+). The materials are definitely not "young" in any way or aimed at a certain age group. The thing she really doesn't have data on yet is what happens with ID. So far the answer on that has been take the plunge, see what happens. It's always meant to be customized anyway. To me the advantage of working with older students would be that they're ready to know WHY they want this and to embrace it and own it. It sounds like your ds is doing that, which means he could make faster progress than someone like my ds who is being dragged along and doesn't have that maturity yet. 

At OCALICON some people were throwing around ages for development of interoception, but that's also something I think there's not yet hard data on. We pressed them and they couldn't back up their claims with any evidence. But I think, just mho, that bringing maturity and readiness to the table is GREAT.

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22 hours ago, nature girl said:

Hmmm...I know you've mentioned this before. But she seems like she knows when she's feeling off. She definitely knows when she's feeling regular physical sensations (hot/cold/tired/itchy), she knows when she's been able to tell me when she's feeling nervous or angry, and we've talked about how it feels inside when she's frustrated. It's just she doesn't seem to want to change those feelings, she'd rather throw something across the room (or hit) than do deep breathing or take a walk, because she gets that release of tension from throwing or hitting. And she sometimes will purposely provoke because she gets that dopamine burst...We've learned not to react at all, because it's giving her what she feels her body needs, but she sometimes escalates her actions just in an attempt to get that excitement. So I'm worried there won't be any benefit in her mind to calming herself.

DS14 is this way. He likes to ramp himself up and does not want to settle down. He does not throw things, but he does stomp around, slam doors, yell at people, etc.  I see this exact thing myself in my son. DS has always instigated situations in order to ramp himself up. He is low registration for sensory, so it takes more input for his body to respond to sensory.  I think partly in those moments, he is seeking high input in order to feel the dopamine or whatever is giving him the rush.

When he was little, we were taught a brushing protocol for him and how to do deep joint compressions. He hated it and resisted it, even though it worked for him. I think he did not like the sensory input of the methods, but he also clearly did not WANT to calm down.

We have not tried Mighteor. But we have found with other kinds of therapy that if DS does not buy in and choose to participate willingly, we don't see a benefit. So I understand your concerns. I'm not sure of the cost of Mighteor right now, but if it's not too high, it might be worth trying, even knowing it might not work as you want it to. Because if it does help -- YAY!

Edited by Storygirl

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13 hours ago, sbgrace said:

I've always felt, from your posts, that my son and your daughter share some characteristics (some, not at all of course). Anxiety is a factor for him--he was just always underlying anxious. 

We did Mightier, and it did help him. In his case, it did help raise awareness of what was going on inside and taught him how to breathe to calm (we had tried with many therapists).

He made the connection between the breathing and calming the insides.

He uses it in daily life, including settling to sleep and managing anger. He does breathing to calm at least once most days and every night.

He runs, and that helps as well. But I think the awareness he gained with Mightier was part of that in that it helped him realize the running helped him with anxiety and emotional regulation. 

Your daughter may have more awareness. Zones was a flunk for us--multiple therapists tried that sort of thing with him. I think it was that he was missing true awareness--even though he could use the right words and say he was in whatever zone. On paper, he looked like he had awareness. But, it wasn't there like it needed to be to really make progress. 

DS is a runner, too! He is 14 now, and though we still have plenty of instances of him ramping up, when I think back, it really is less of a problem now than it used to be. Still a problem! But less.

The running helps, I am certain. It gives him that dopamine but also fills that intense sensory need, with the pounding of his feet reverberating through his body.

He is also a drummer. The more drumming, the better, for him. He has two sessions of band per day at school -- regular band and jazz band -- and he comes home and practices more. Often for hours. When he is not running or drumming, he is playing his electric bass guitar, which also gives him an intense sensory load.

Until this thread, I had not really connected the increase in his drumming and running with the decrease in his need to ramp up in interactions with others, but I think the connection is probably there. He still likes to stir the pot often, but it is less frequent than before.

What he lacks is the awareness piece. He lacks metacognition and always has. He feels he needs to run and needs to play music, but he would not be able to explain how they help him. Perhaps someday he will get there. We will keep working on it.

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4 hours ago, Storygirl said:

What he lacks is the awareness piece. He lacks metacognition and always has. He feels he needs to run and needs to play music, but he would not be able to explain how they help him. Perhaps someday he will get there. We will keep working on it.

Yes, that's the interoception. 

Your running and drumming sound really good! Is he doing anything with weights or can he get in a weight lifting class? Our Y has a free class two days a week. Steam room is another way to get that intensity if that Y happens to keep it hot. At our Y you have to be 18. Bonus is the steam room causes the body to make heat shock proteins, which replicate what happens when the body has a fever. If his symptoms improve when he has a fever, it's something to look into. Taking a sulforophane supplement can also do that.

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He would be interested in weights. He has some hand weights at home, but I don't think he's used them recently. Using the hand weights used to be one of his obsessive interests, but then he switched to other things. There is a weight lifting period at the high school as an elective, but we decided he should wait until he's older. Putting him in a weight room as one of the youngest kids with perhaps a bunch of meaty muscle bound senior football players didn't sound like a great idea, though we considered it briefly.

He's super skinny. 5'3" and barely 100 pounds. But it's all muscle. He's very fit. It's hard to find pants to fit him.

No Y near us, unfortunately. When he's older, I think it would be good for him to join a gym.

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He may do really well with weights. Lots of spectrum when you get in the gym like that. It's a solitary sport with a sort of group, shared interests kind of place. He's not too young to be lifting barbells and going heavy, and it might feel REALLY GOOD. Like better than you can imagine good. When I lift, the whole world clears for me. 

Just for a laugh, one early goal people have is to lift their body weight (deadlift). He wouldn't have far to go, lol. 

As far as in with the rest, yeah I don't know. I'm the 5'5" woman lifting around some pretty serious men. You think their language would be bad? Yeah, guys like that get kinda crass. The Y is more family-oriented, so if they're changing the G rating I can give 'em a look. Most of the men are pretty polite around me. But I can see where either they might be protective of him (younger brother) or really bad role models, just all depending.

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Well, I want you to try Mightier, so you can report back! After the month free trial, it's a $100 flat fee plus $19 for each additional month.

Plus, it's video games... so it's probably very attractive to an ADHD child. You might not even have to explain what it's for - if she gets defensive about talking about feelings - you could just say, here's a fun new game! Personally, I think the whole things sounds fun - the video games, the wristband you get to wear, all of it.

Edited by Mainer

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I would not be afraid of lithium in nutritional doses.  It is an essential nutrient.  I find off the chart low lithium as the number one most common finding on hair analysis.  It is very common in mercury toxicity.

I would be afraid of it too in prescription level doses which are much, much higher.  I use one DFH Lithium Synergy per day for adults for three months, then once per week.

It helps with memory and mood swings.

 

Edited by drjuliadc
Toddler climbing on my head

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Yes, if you want to eat foods that contain lithium (pistachios, for instance), knock yourself out.

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