nature girl Posted January 19, 2016 Share Posted January 19, 2016 This was more than a little sobering, and worth watching. Even though it's clear this guy is a bit of a crusader, he cites quite a few studies and quotes from ADHD professionals, all of whom come to similar conclusions. Thoughts? 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 20, 2016 Share Posted January 20, 2016 Ok, I got about 3 minutes in but I can't stay right now, gotta go to a Lee Binz webinar. Things i'm noticing so far? One, the dude is not a doctor, not actually having to take any ACCOUNTABILITY for his actions, only a "science reporter." So that's a good point to start with. Two, this guy is on an agenda and currently has LOTS of meds on his hit list. Google his name and up pops a website from the name of his book (Mad in America). Scroll through and the articles are not surprising. They list all sorts of arguments that people have heard before. (anti-depressants actually don't do what you think, blah blah). Here's my problem. I go back to the never having to make the hard decisions and be accountable thing. That's nice to inform people. That's nice to have opinions across a population. It's NOT nice to scare people SO SPITLESS that they feel guilty making the hard decisions people sometimes have to make. So let's be straight. I have a loved one who takes some medications on this guy's hit list. This loved one was previously unstable to the point of homeless, unable to enjoy life, be in society, provide for one's self, etc. Do you REALLY think that's good to get SO in a twist over some THEORETICAL problem to a theoretical population or the possibility of misdiagnosis or misuse in certain situations that we would FAIL to acknowledge the benefit to this PARTICULAR person??? We aren't dealing with populations. We only are helping one person, our loved one. And we sometimes have to make hard decisions. And sometimes those hard decisions are to give something, KNOWING there can be negative side effects and potential problems, because the consequences of NOT doing it, for some situations, are actually WORSE than the consequences of doing it. 11 Quote Link to comment Share on other sites More sharing options...
nature girl Posted January 20, 2016 Author Share Posted January 20, 2016 (edited) Oh I understand what you're saying, and I'm not anti med by any means, I've considered (many times) whether they'd be right for my daughter. But the studies he cites, and professionals he quotes (who are doctors) are sobering. Maybe he's picking and choosing data to make his case? But honestly I've been trying for months to find studies that show kids are actually more successful in the long run, and haven't been able to find anything, much of what I do find says the opposite. (That's how I found this vid in the first place.) I do find many young adults and adults saying that now they go insane without their meds, but it's not clear whether that's because they're experiencing the same effects they did before meds were even started, or if they're worse off because their brains have been adversely affected to need the meds. The studies (including the huge MTA study that showed kids actually did worse in testing and behaviors in the long term, as well as several others) suggest the latter. And animal studies show dopamine targets are permanently increased with stimulant use, which means they're no longer able to function without the stimulants, which may be why in many kids the meds become ineffective over time, especially when they're started young. It's just upsetting that there aren't any studies that show long-term benefits. If anyone does find those studies please let me know, because it'll ease my mind a little! I'm hanging on to the idea that if/when we REALLY need them, they'll be a good option for us. ETA: I don't know that the beginning of the vid says much, I picked it up from around 15:00 on, and think it's at least worth watching as part of making an informed choice. But I'm easily swayed (I'd be awful on a jury, back and forth with every witness) so I'd be happy to be swayed back. Edited January 20, 2016 by Anna's Mom 3 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 20, 2016 Share Posted January 20, 2016 I'm still hanging with this Lee Binz webinar, though I need to get ds into bed. (He was sick today and is watching something on tv, resting.) I totally agree with you, and I hope to get to watch the video in a bit and get through the remaining 57 minutes, hehe. I've seen that too, like with a study of Finland showing no change *over a population*. And I see the sites with people trying to manage their addictions. And I've had moms tell me their kids use their ADHD meds as a crutch and excuse *not* to make effort with EF. (You forgot to give me my meds, that's why I'm...) That's not cool. But I still go back to my flipside that we're not trying to decide things for a population, only for one specific person. With late talking (as a general concept), the statistics are that many kids *will* in fact start talking later without therapy. But, when faced with the decision on how to handle it for my ONE SPECIFIC CHILD, was *I* going to gamble and say oh, the results for a population are good enough for me?? Obviously not. I had to guarantee the correct results for my one specific situation, no matter what the results would be for a population. And it turns out I was right, because my ds has apraxia, a serious problem, which isn't the case for all or the majority of late talkers. Ok, here's a flipside to this whole conversation. If you're having SERIOUS ADHD symptoms, like serious enough that meds really, for safety or whatever, really ought to be on the table, what is your alternative? And I'm serious about that. I'm not saying there's not an alternative, because there actually is. But I'm just playing devil's advocate here and saying taking a little flax oil, whatever probably *isn't* going to cut it, not in really serious, serious situations. And really, I don't know much that cuts through that. My ds has had about 20 sessions of neurofeedback now. Is that making a difference? I really don't know. We've been doing so many things this year, it's hard to tell. I need to sit down and really think about where he was when we started and where he is now. I'm just saying, aside from meds, neurofeedback is the only thing *I* know of that even PRETENDS it could give some serious modulation of ADHD. Everything else is just lick and promise, percentages, and they know it. So me, I can't get to a no meds ever position, because then I don't have an effective tool for serious problems. Neurofeedback is quite, quite expensive. Typical course for ADHD is 20 sessions and *40* for ASD. There is *some* data to suggest neurofeedback can get results comparable to meds and have the results be permanent. But even if that's true, it's not a *realistic* option for most people. 3 Quote Link to comment Share on other sites More sharing options...
sbgrace Posted January 20, 2016 Share Posted January 20, 2016 (edited) I don't have time to watch the video now. However, I have seen studies that show lack of long term academic benefit. When I tried to do research, I found others that drew an opposite conclusion. I think you would need to trust the video author not to cherry pick. Here is an article that appears to be relatively even-handed highlighting the lack of academic improvement in a study: http://www.wsj.com/articles/SB10001424127887323368704578593660384362292 A recent published study tracing studies of long term academic outcomes did find improvement with meds, and greater improvement with multi-modal (meds plus behavioral) treatment: http://www.ncbi.nlm.nih.gov/pubmed/25583985 An article discussing detail about that study: http://sharpbrains.com/blog/2015/03/11/to-improve-academic-outcomes-children-with-adhd-need-both-medication-and-non-medication-treatments/ ETA: I see this is an older (first) addition of the MTA study you were referring to in this thread--so ignore these links. However, I read the follow up of the MTA. Have you read the actual study? I think interpretation could be skewed depending on the source of that interpretation. I will say that finding behavioral approaches for ADHD, particularly focus, seems to be hard to come by in my area. But academic outcomes aside, there are other considerations. Impulsivity can be destructive and dangerous. I've seen studies showing greater substance abuse in non-treated ADHD teens. However, this is probably an area where hard conclusions are difficult to draw. Finally, in my experience severe ADHD (combined/hyperactive anyway) has social consequences. Meds can help mediate the social side. There is no doubt in my mind that my son is a better "him" medicated, even if he derives no long term academic benefit. Edited January 20, 2016 by sbgrace 4 Quote Link to comment Share on other sites More sharing options...
Guest Posted January 20, 2016 Share Posted January 20, 2016 (edited) nm Edited February 10, 2016 by Guest Quote Link to comment Share on other sites More sharing options...
wendyroo Posted January 20, 2016 Share Posted January 20, 2016 I agree with Elizabeth. With my specific child and my specific situation, I can't afford to worry much about long-term, I have to keep us all safe today. I haven't watched the video, so I don't know if this is relevant, but this is my pro-med viewpoint. We haven't yet found an ADHD medication that works for my son...I think there is a very real risk that going through his formative years with an untreated mental illness could have significant negative long-term effects. Day to day, minute to minute he fails to live up to expectations: mine and DH's, his coachs', society's, his own. He is constantly rejected by his siblings and peers because he grabs toys, hits and shoves, breaks things, is too hyper and impulsive. He wants to sit and read a book, play with a friend, write a story about ninjas, finish his math quickly so he can go play, behave in such a way that people aren't frustrated with him, but his brain is constantly sabotaging his efforts. I worry more about the cumulative effects of living his current life than I do about poor long-term outcomes with medication. Wendy 7 Quote Link to comment Share on other sites More sharing options...
sbgrace Posted January 20, 2016 Share Posted January 20, 2016 (edited) Anna's mom--I didn't make the connection when I read your OP to you being a parent who is dealing with unmedicated ADHD and uncertainty in that area. I might have responded differently had I remembered who you were/your previous posts here. I get the fear and hesitation. I was there myself for a long time. Any medication has benefits and risks/drawbacks. My son is severely impacted enough that the choice is now clear. I read the follow up MTA study, and it doesn't change my feelings on the good meds are doing for my son. I know the pressure of not wanting to make a decision you regret with your child. :grouphug: Edited January 20, 2016 by sbgrace 2 Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 20, 2016 Share Posted January 20, 2016 This might go the other way too much, but I get the impression (from previous reading on other occasions) that this author has seen very personal and very real-life bad outcomes from poorly managed ADHD. She kind of goes to putting ADHD in the cross hairs as horrible and awful, etc. But, I think she is advocating from a point of seeing the really bleak side. She is not afraid to call people out and name names when she thinks that something they say is irresponsible. http://adhdrollercoaster.org/ Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 20, 2016 Share Posted January 20, 2016 This might go the other way too much, but I get the impression (from previous reading on other occasions) that this author has seen very personal and very real-life bad outcomes from poorly managed ADHD. She kind of goes to putting ADHD in the cross hairs as horrible and awful, etc. But, I think she is advocating from a point of seeing the really bleak side. She is not afraid to call people out and name names when she thinks that something they say is irresponsible. http://adhdrollercoaster.org/ Wow, I hate to say it, but a quick read through that site reminds me of a lot of reasons NOT to take meds, wow. How about the plight of this gentleman, 75, who can't survive without high doses of meds that a new doctor won't give him. http://adhdrollercoaster.org/myth-busting/myth-8-only-severe-cases-of-adhd-merit-medication/ To me that sure sounds like the brain has become chemically dependent after so many years. And I think that's a REASONABLE QUESTION to ask. Or look at other people in that thread whining about how they could get good grades in school but got in trouble on field trips for touching things. I'm sorry, but my kids both are diagnosed and they don't get in trouble places for touching things. Like REALLY we're going to tell someone to take a serious stimulant because they're upset that they weren't given enough structure and discipline in school??? I KNOW ADHD is not a discipline problem, but it DOES require more structure, more consistency. So whine about meds when you really needed more structure? Or yes, let's go again to the 75 yo, incoherent rambling gentleman telling us his dc's ADHD drove his wife to SUICIDE. There you go. And his logic? She manipulated the mom with techniques from a magazine. I'm sorry, but again, ADHD is not an excuse for SIN, evil, unkindness, or anything else. I meet a lot of people who use ADHD, which is a diagnosis of exclusion, a diagnosis with questionable etiology, no clear genetic path, so many variants that it's not even actually well understood, more of a DUMPING GROUND of the "mix syndrome" than anything, and use that term as an excuse for poor behavior, not modifying academics, not changing the learning environment or structure. I meet people frequently who rant on and on and use "ADHD" as the excuse for their kid's behavior, while MY kid, who IS labeled (multiple times and confirmed) acts appropriately in the situation. And in that situation, I sit there thinking ok, maybe you have MORE of a problem than JUST ADHD. If ADHD is not a behavioral disorder (which it's no longer considered), then let's stop excusing behavior by saying it's all the fault of ADHD and needs meds. Plenty of people, for THOUSANDS OF YEARS, have managed to work hard, have good character, provide for their families, etc. etc., without stimulant meds. But they did it with tools that our current culture denies our kids, like SERIOUS HARD WORK. Like vocational paths and hands-on careers. They want our kids locked up inside stuffy rooms from ages 3-18 and then they want to call them defective for not fitting the cage paradigm and they want them medicated. I know adults with ADHD, and they deal with it through serious HARD WORK. Like it has been done for thousands of years. Even on the boards, we've had discussions about this. There was a thread years ago where people were talking about how hard boys were to school, and this one person, who no longer posts (this was from years ago), says no problem, my boys are fine, but oh by the way they go shovel manure and feed the cows for three hours every morning. ;) 3 Quote Link to comment Share on other sites More sharing options...
sbgrace Posted January 20, 2016 Share Posted January 20, 2016 (edited) ? OhElizabeth. My son is one that goes around impulsively touching things. He does substantially less of that medicated. He does a lot of impulsive behaviors, no matter the structure or lack frankly. Medication helps with that. His twin brother doesn't do the behaviors he does. I don't think it's parenting. I don't think anyone can generalize their own experience with their kid to another's experience, right? That your child doesn't behave like mine doesn't necessarily mean that my child wouldn't continue to behave as he does if we instead had plunked him in your home and outside environment and structure, true? I don't know. I'm pretty concerned about my kid's future, so I'm over-sensitive. No, honestly I worry that people watch my son and think the things you think. I figure they probably think he's poorly parented. Beyond that I find him incredibly hard to parent. So I may be over-reacting to what you wrote. Edited January 20, 2016 by sbgrace 3 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 20, 2016 Share Posted January 20, 2016 I've said this before, but I really mean it. I'm *not* anti-med for anyone when they decide that's their approach. I think it's the ethical, reasonable thing to have that choice. And I think when people are making the choice *not* to do that, you really have to get to this sort of practical thought process of OK BUT THEN WHAT. And *sometimes* there are answers that are satisfactory for that. Like maybe that kind of work intensive, work half the day, study the other half, focus on character, maybe that really fits your dc. I think it's really odd to say everyone has to be an academic. I think it's ok to have these other kinds of paths. I think there's neurofeedback and nutrition and things that can give *percentage* improvement. And then it's ok, does that get me to a functional child? Is that child functioning well in the sphere that suits their bent and gifts? That dad response at that link bothers me, because it mirrors the dependency thought process I saw on an addiction site, where people were saying that's how the stims made the feel, like they were just so productive, like they LOVED it. Like at what point are we normalizing and at what point are we going into a different mindset, kwim? Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 20, 2016 Share Posted January 20, 2016 (edited) ? OhElizabeth. My son is one that goes around impulsively touching things. He does substantially less of that medicated. He does a lot of impulsive behaviors, no matter the structure or lack frankly. Medication helps with that. His twin brother doesn't do the behaviors he does. I don't think it's parenting. I don't think anyone can generalize their own experience with their kid to another's experience, right? That your child doesn't behave like mine doesn't necessarily mean that my child wouldn't continue to behave as he does if we instead had plunked him in your home and outside environment and structure, true? I don't know. I'm pretty concerned about my kids future, so I'm over-sensitive. I'm confused by your post. Hmm, so you're saying the child on that thread was possibly so impulsive they couldn't control it? Interesting thought. Ds is combined type and his impulsivity (on the computer tests) is crazy high. And yes, that's pretty much what I've seen from watching other kids, that the meds are effective at calming that down. He's also younger/smaller than your ds, so he's easier to give extreme structure to. We'll just allow that my tune can change as he gets bigger. ;) Ok, so then here's a question or a thought process. I've seen studies showing that increasing scores on the BRIEF (indicating higher levels of EF impairment) are DIRECTLY correlated and predictive of ASD diagnosis. I've just sort of *assumed* that increasing impulsivity, into the WOW YOU DON'T GET HOW HARD THIS CHILD IS TO WORK WITH realm, is really because it's in that mix syndrome region, that area where it starts to kiss and push over to spectrum. I think there could be a *range* and that we could have kids with ADHD who are less severe and more severe on various features, which is in fact what we find. And to me, my *personal* opinion is that as we push over to that kissing the spectrum or into the spectrum region, all bets are off, whatever must be done must be done. It's only on that *lighter* end of things, where there's really just some ADHD, no theory of mind impairments, etc. etc., where I'm like *really* you can't bring *any* self-control or structure or responsibility into play here? None? Or as Lecka challenged me. She said if my (her) kid has his diagnosis and gets his labels and can be taught to sit still and do his work, why can my kid, maybe with a lesser label, not? And I don't think that has to have a pat answer, but I think it's a reasonable question. It's what drives me to work harder with my ds, to get him more tools and more interventions, because he ought to have the ability to do things his peers do. And yes, if my dc cannot have safe, reasonable behavior, in spite of serious intervention and supports, meds it will be. Everything before that point, to me, is just opinion. And will we get to that point where we make that choice? We might? We're like SO right on that line. When did you start medicating him and what pushed you over on that point and made you decide a certain way? Was that a point you *changed* on? And, fwiw, I don't think anyone (me, no one) would be criticizing your dc's public behavior, no matter what he was doing. Kids just have challenges, and I think our culture has really opened up to the idea that some kids have challenges no matter how much support their given and that it just is how it is. Edited January 20, 2016 by OhElizabeth 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 20, 2016 Share Posted January 20, 2016 I don't think anyone can generalize their own experience with their kid to another's experience, right? That your child doesn't behave like mine doesn't necessarily mean that my child wouldn't continue to behave as he does if we instead had plunked him in your home and outside environment and structure, true :iagree: And lets not forget accident rates and such with kids who are impulsive. I've told you this before, OhE, but put ADHD and rural/farm "kids will be kids" environment together, and you get hair-raising stories. OhElizabeth, remember how you were shocked at the ADHD kid getting impaled on a fence post, and I was not? Extreme, but not a surprise to me. I know someone who had THREE SKULL FRACTURES by the time they hit adulthood. Even that did not translate into a change of behavior for a very long time. He's also younger/smaller than your ds, so he's easier to give extreme structure to. We'll just allow that my tune can change as he gets bigger. ;) My trigger point for meds comes LONG BEFORE extreme structure, and in our case had a lot to do with self-image and such. You are willing to provide a degree of structure that is far beyond what most people would do. Also, my kids aren't always with me. I know someone who held off on meds for her kids for a long time. One of them went from receiving tutoring to being an honors student and able to participate in more activities that she had been wanting to do. That doesn't mean someone else has to do it, but it's not just about behavior. Some people are truly functional for the first time in their life on meds, as adults. It makes me sad to hear that. Really sad. I know you are not anti-meds. 4 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 20, 2016 Share Posted January 20, 2016 (edited) :iagree: And lets not forget accident rates and such with kids who are impulsive. I've told you this before, OhE, but put ADHD and rural/farm "kids will be kids" environment together, and you get hair-raising stories. OhElizabeth, remember how you were shocked at the ADHD kid getting impaled on a fence post, and I was not? Extreme, but not a surprise to me. I know someone who had THREE SKULL FRACTURES by the time they hit adulthood. Even that did not translate into a change of behavior for a very long time. My trigger point for meds comes LONG BEFORE extreme structure, and in our case had a lot to do with self-image and such. You are willing to provide a degree of structure that is far beyond what most people would do. Also, my kids aren't always with me. I know someone who held off on meds for her kids for a long time. One of them went from receiving tutoring to being an honors student and able to participate in more activities that she had been wanting to do. That doesn't mean someone else has to do it, but it's not just about behavior. Some people are truly functional for the first time in their life on meds, as adults. It makes me sad to hear that. Really sad. I know you are not anti-meds. And see to me these are all interesting points that people have to think through! And I think it's ok to talk about that. Those are such good points. Like ok, are they even safe/appropriate when they're trying to do these more physical things? And are they able to have that behavior with *other* people or only when provided the support of the parents? No, those are really VALID questions. They can help the op, and they're good for me to think about. I started a long-term meds thread, because I'd also like to talk about that. Like if someone makes that choice, being fully informed, weighing the issues, what is their thought process for long-term? To me, that whole idea of a 75 yo man craving his meds, lambasting doctors over lack of meds, I think there are reasonable questions about that. Are there long-term consequences to the meds? Do they envision the person weaning off eventually? Do they just have the person stay on the meds? Is there a consequence to those choices? To me, I don't think that's probable to say my dd ought to have meds long-term. Ds, on the other hand, is this totally different bird. For him there are safety issues, overall ability to function. Do you find that it's *easier* to work on the theory of mind and perspective taking stuff with the meds? Like does it actually make any difference? That's something the op has talked about, like why can this stuff not sink in if she's understanding the words and assenting... You know, this is back to the op a minute, I have enough concerns about meds that I've talked us out of them for years. I also am not anti-med, as KB says. But the one thing that is really curious to me is to watch kids who have very similar scenarios and watch how the meds do for them. There's a scenario I watch where the difference is RADICAL. And there really is this point where, if the meds would get my ds to that point (making up that difference that I see), then that's pretty wow, kwim? I think that too is a really hard thing to get honest about. Like it's ok to say we'll I'm taking the no harm position, I'm not logging my kid full of that stimulant crap. Fine. But then ARE they functioning at the level they could be functioning at? Not *is their behavior convenient*, because I think we're all way beyond talking about that. I'm saying where it really makes a DIFFERENCE, where the dc would be RADICALLY DIFFERENT, on a whole new plane of function, WITH THE MEDS, are we really being honest about that? Because I *know* it makes that kind of a difference for some kids. Btw, we've gotta love the flipside. I'm literally from a religious background that says our kids are BAD. Do you know what it's like to have this voice saying: But you know what that book said... Read that Bible verse about not paying attention, about acting impulsively, blah blah... If your kids would just read Scripture and understand how IMPORTANT it is to WANT to do what's right, they wouldn't be doing all that, because with enough Bible verses you can cure ANYTHING. THIS is what we were told! I've corresponded with the author of a book from that community who was offered a job by the (christian) university I went to! Seriously!! So then, if we're NOT doing meds, what ARE we doing to bridge that gap? Because let's not be all honkey dory like oh it's not happening, because it really IS. So then we're saying we're going to CBT that gap? We're going to use neurofeedback to bridge that gap? I don't know, we're 20 sessions in and it ain't no radical cure in my book. Percentage improvement maybe. Maybe anxiety more improved. Or maybe attention but not impulsivity? I'm just saying his current level can break your soul. So what's bridging that gap? Sure isn't Zones of Reg. Wishful thinking? Self-improvement? Something else? Edited January 20, 2016 by OhElizabeth 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 20, 2016 Share Posted January 20, 2016 And see to me these are all interesting points that people have to think through! And I think it's ok to talk about that. Those are such good points. Like ok, are they even safe/appropriate when they're trying to do these more physical things? And are they able to have that behavior with *other* people or only when provided the support of the parents? No, those are really VALID questions. They can help the op, and they're good for me to think about. I started a long-term meds thread, because I'd also like to talk about that. Like if someone makes that choice, being fully informed, weighing the issues, what is their thought process for long-term? To me, that whole idea of a 75 yo man craving his meds, lambasting doctors over lack of meds, I think there are reasonable questions about that. Are there long-term consequences to the meds? Do they envision the person weaning off eventually? Do they just have the person stay on the meds? Is there a consequence to those choices? To me, I don't think that's probable to say my dd ought to have meds long-term. Ds, on the other hand, is this totally different bird. For him there are safety issues, overall ability to function. Do you find that it's *easier* to work on the theory of mind and perspective taking stuff with the meds? Like does it actually make any difference? That's something the op has talked about, like why can this stuff not sink in if she's understanding the words and assenting... You know, this is back to the op a minute, I have enough concerns about meds that I've talked us out of them for years. I also am not anti-med, as KB says. But the one thing that is really curious to me is to watch kids who have very similar scenarios and watch how the meds do for them. There's a scenario I watch where the difference is RADICAL. And there really is this point where, if the meds would get my ds to that point (making up that difference that I see), then that's pretty wow, kwim? ... So then, if we're NOT doing meds, what ARE we doing to bridge that gap? Because let's not be all honkey dory like oh it's not happening, because it really IS. So then we're saying we're going to CBT that gap? We're going to use neurofeedback to bridge that gap? I don't know, we're 20 sessions in and it ain't no radical cure in my book. Percentage improvement maybe. Maybe anxiety more improved. Or maybe attention but not impulsivity? I'm just saying his current level can break your soul. So what's bridging that gap? Sure isn't Zones of Reg. Wishful thinking? Self-improvement? Something else? I think that ASD makes my son less able to understand, respond to, and regulate his ADHD. I think that makes meds a totally different animal than it does for someone else. I am also a very big advocate of people using meds when they need them. The first psych we saw was really good, but we had to quit for logistical reasons. He had many adult ADHD patients that used meds for specific thing. In some cases, they had a boring portion of their job that they consistently flubbed up. So, he recommended they take short-acting meds for those tasks, and they had great responses to that. My son needs them for a broader range of skills, some of which will never be whole. Some people with ADHD have skills they can't draw on without meds. I think theory of mind is harder with ASD. I think meds can help. Not all theory of mind issues are that cut and dry though, and SELF AWARENESS is an EF skill. Self-awareness is a prerequisite for all kinds of change, including theory of mind. My son has better theory of mind with meds, but he's not un-autistic with meds. Instruction in theory of mind will not make him typical. He will not be remediated. He will simply be more typical more of the time and hopefully learn to be himself while not irritating people to death or having constant meltdowns. It might give the ability to take things at face value when he's thinking the NT people are nuts. :-) It's just more complicated than all of that. With ASD, that gap is not necessarily named ADHD. They are not always equal. In fact, you can give meds, and there will still be a gap. That is why the new DSM gives support levels. That gap is a support level deal--the size of the gap determines the size of the support level (in at least some fashion--it's not exactly identical to ADHD). I am not sure what you call it in ADHD terms--it's just ADHD or not ADHD and then specify which skill is lacking, I guess. But in ASD, it's not like you just add up therapies and parts and the gap goes away. It just changes or maybe gets less severe. With ADHD, you might actually be able to make lasting changes to the person's awareness, and then they use meds to help apply that awareness. If they don't learn the awareness piece, then maybe meds saves their life or their marriage or helps them hold down a job. It's not like ADHD goes away, but by definition, they should have a level of ability that a person with ASD does not have (that's the pervasive part of developmental disabilities). Maybe I am talking in circles. 2 Quote Link to comment Share on other sites More sharing options...
Lecka Posted January 20, 2016 Share Posted January 20, 2016 (edited) OhE ---- I think sometimes you have to keep in mind, ASD is not ADHD. They are not the same thing. I think that is easy for me to see, since both my sons, I am told very explicitly, are not candidates for any medication. They would not be helped by it. One has autism, one has dysgraphia. They both have some sensory issues. So -- all the stuff that is autism, it is not going to be directly helped by ADHD medication. I think you would expect focus to improve, and you would expect increased learning to result from the increased focus. That makes sense, right? I think I hear that. I have had some conversations wrt my younger son, and people say, his focus and his learning are already at the point that they see with kids who take medication. So ---- what do I do for all those autism things? Try to provide supports and teach skills. That is what we have got as tools. There are a ton of tools there. Those are the appropriate tools, those are the recommended tools. Anna -- it is interesting to me, the same kinds of things are said about ABA therapy, even though it would seem like it is "natural" in the sense it is not a medicine. I think on one hand, it is worth it to try to seek knowledge and try to avoid bad outcomes. On the other hand, I think any time there is a harder or more complex situation, then it is going to mean we have to make hard and complex decisions. Maybe we don't get the easy route for some things. I think that is inherent to having ADHD or autism (or whatever) vs. not having it. We do not get to have the easy path of someone who has no need to make hard or complex decisions. We can still try to make the best decisions for our kids, though. But we are always going to have some doubters and nay-sayers regardless of what we choose. We do not get to have the feeling of "I am definitely making the right choice" b/c maybe it is not known or maybe it is just a complicated situation in some ways. I think it is just part of the landscape, something we have to deal with and accept in some way, decide how we will make decisions, and at a certain point -- you have to make the best decision, for the situation you have, with the information you have. Like -- our hard decisions are not "which one of the two really good Christian pre-schools will we pick" or "which one of the two progressive, developmental math programs will we pick." But I still have self-doubt and "am I making the right decision" with decisions like that, too! There are nay-sayers and criticizers and people ready to say "you will be sorry" for those decisions, too! We are not going to be immune even then, and I think a math program is pretty momentous, too, really. Edited January 20, 2016 by Lecka 3 Quote Link to comment Share on other sites More sharing options...
Guest Posted January 20, 2016 Share Posted January 20, 2016 (edited) nm Edited February 10, 2016 by Guest Quote Link to comment Share on other sites More sharing options...
Storygirl Posted January 20, 2016 Share Posted January 20, 2016 I'm finding this topic fascinating, because it is touching on many things directly related to what we deal with with DS11. But I have a blazing headache and can't add to the discussion right now. I'll read and think (as much as my poor little brain will allow) and hopefully have some things to say tomorrow. 3 Quote Link to comment Share on other sites More sharing options...
nature girl Posted January 21, 2016 Author Share Posted January 21, 2016 Okay this thread has morphed a bit, but going back a few threads, thank you all for the links. They've...well made me more conflicted, but also given back a bit more hope. ? OhElizabeth. My son is one that goes around impulsively touching things. He does substantially less of that medicated. He does a lot of impulsive behaviors, no matter the structure or lack frankly. Medication helps with that. His twin brother doesn't do the behaviors he does. I don't think it's parenting. I don't think anyone can generalize their own experience with their kid to another's experience, right? That your child doesn't behave like mine doesn't necessarily mean that my child wouldn't continue to behave as he does if we instead had plunked him in your home and outside environment and structure, true? My daughter is the same. And yes, it's completely unfair to compare kids on the ADHD spectrum and say, "Well my kid would never do this because of the way I've parented her." ADHD-PI is a completely different animal from ADHD-Combined, and Combined can have all levels of severity and comorbidities. Add ODD, and it can be almost impossible to control. Anyway, what's primarily holding my DD back at this point is her behavior, rather than her inattention. She's just unable to sit still when she's not 100% engaged (and often even when she is, I can feel her jiggling when I hold her as we read books she loves...) The behavior keeps her from doing things that I know she'd enjoy, the few outside activities we've tried (art, gymnastics, dance, library programs) have been dismal failures, and in the section of coop where kids are actually participating in fun learning, half the time she's rolling around on the floor, or trying to talk to the kid next to her. That's with me right there next to her in the room trying to contain her. And my husband and I are good parents, I've read all the right books and implemented all the right strategies, this is just the way she's wired. There are strategies that so far have kept her from falling off the deep end of ODD or CD, but nothing I or a therapist do will take her even close to the place NT kids are naturally. So I hold out the idea of meds as this possible panacea, that might give her a better chance at succeeding in the things I know will make her happy. But going back to the OP, my biggest fear is that if I start meds in the next few months (I wanted to attempt to start her in this wonderful summer nature camp we have nearby, another activity we tried and failed with this summer, and would love to get her involved in Girl Scouts and other activities, that I'll be incapacitating her brain if the time comes that she needs that focus later to develop more necessary skills. I'm not planning on hs'ing through high school, but there's NO WAY she'd be able to survive in ps as she is now. (Our tiny school doesn't have SpEd, and I have no idea what if anything is available at the middle and high school.) At the moment she's able to be happy, she's not really incapacitated, she's able to learn, albeit at a slower/more halting pace than she would otherwise, she's able to play and have a lot of fun. So at this point she doesn't NEED meds for a happy life. But there's a lot of life she's missing out on, because of her behavior, and she's starting to alienate her friends because she's so socially immature. And even though her meltdowns are much less frequent as she gets older, she can be incredibly hard to parent. As she gets older and stronger, that's going to become more and more of an issue. So this is where I'm stuck. I don't care about the ability to focus on academics, we can handle that somehow. Even if you told me meds might harm her academically, but would improve her behavior long-term, and continue to improve it into adulthood, I'd jump on the wagon without looking back. But it sounds like they're saying, not only does it not help academically, it can actually worsen behavior over time, or at least will not improve it after the first couple of years. I want her to be able to behave on the job in her 20's, and to succeed in marriage and motherhood...That's a heck of a lot more important than having her behave in summer camp at 6. 4 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 21, 2016 Share Posted January 21, 2016 (edited) AM, I don't think anyone thinks the meds make the dc unable to learn EF skills. I think it's that it's sometimes done as an either or, like hand them the meds, got what we needed, maybe he'll outgrow it or be able to control it later, move on. There's nothing saying you can't do BOTH meds and heavy work on EF, self-regulation, etc. I think I'm taking too many words to say stuff. What I wish I knew is what effect the neurofeedback is having. We don't have it isolated, because we're doing so much. *Supposedly* it's targeting the attention and anxiety. Dunno. I don't think anything we're doing right now is targeting IMPULSIVITY, and I think that's a really good question as to what we could be doing better there, given that meds COULD give us significant improvement and give that it's a part of our problem right now. Btw, this is totally a nothing, but now that my ds can order numbers (you know, like put 1-9 in order), we're playing a LOT of solitaire. We just spent an hour plus today finally playing actual physical spider solitaire. He had been sick and was just really dysregulated, oh my. And me, I'm sneaking in our math goal (counting by 2s!) into it. We're playing spider, so you lay out 10 piles across the top and have another 50 cards on the side to deal more cards. As long as you stick to 1-2 suits, it's generally winnable. You can push visual processing speed with it too. But really, it's just so CALMING, oh my. I use it to go to sleep at night (playing on the ipad) and have been doing that for a couple years now. Lining up cards is very *calming* kwim? And so who's to say a little poker, a little solitaire, whatever shouldn't be part of a calm homeschool routine, kwim? :D Edited January 21, 2016 by OhElizabeth 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted January 21, 2016 Share Posted January 21, 2016 (edited) nm Edited February 10, 2016 by Guest Quote Link to comment Share on other sites More sharing options...
Storygirl Posted January 21, 2016 Share Posted January 21, 2016 I haven't been able to watch the video in the OP yet, and I am not an expert on medical research. I can't know whether DS11 will still be on meds at age 20 or whether they will lose their effectiveness. But I can see what they do for him now, and I know what things are like for him without meds, and most of all, I kind of have a philosophy. Which is...The more that we practice doing something, the better we become at it. So if we practice kindness, it becomes easier to be kind. If we practice being snarky and rude, it becomes easier to be snarky and rude. We are constantly talking to our children about how they are training their hearts with their behavior: "We don't want to practice being mean. We want to practice being kind." To be honest, we have some mean behavior going on among the children, so this is a continual refrain around here. We talk about how the more often we are mean, the easier it becomes to be mean the next time. So we want to practice being kind, and the next time, it will be easier to be kind. How is this related? The meds allow DS11 to practice better behavior and better executive function. When he is not medicated, he does revert back to his unmedicated ways, which is frustrating. But I'm hoping that having constant daily practice in doing BETTER will make a difference for him over the long run. Because he is now able to have better practices in behavior, relationship skills, and EF for part of his day, whereas before meds, he was struggling across the board all of the time. A little practical example. He has a very hard time folding a basket of laundry. It is still challenging for him when medicated, but when unmedicated, it is nearly impossible to get to the bottom of the basket without some kind of emotional upset happening. So when he is medicated, he is getting better practice in how to fold laundry and can work on learning skills to make the task more manageable. My hope is that he is slowly (veeerrrry sloooowly) acquiring some better laundry folding skills, so that when he is 20 and living on his own, he will be able to accomplish this task without trouble. My hope is that all of his experience with folding all of those baskets of laundry will have taught him something that will STICK by adulthood. Having the meds now gives us the ability to work on laundry skills in a way that we cannot do when he is not medicated. I don't know if that makes sense, but that's been my philosophy. That we become better at something when we practice the skills. And it's a lot easier for him to practice the skills and have successes when he is medicated. I am really more interested in his people skills -- his ability to choose kindness instead of meanness -- than his laundry folding skills, but for me the principal is the same. Change comes very slowly for him, and sometimes it seems like it will never come at all, but we keep plugging away. We hope that practice (and prayer) will make a difference over time. 6 Quote Link to comment Share on other sites More sharing options...
Lecka Posted January 21, 2016 Share Posted January 21, 2016 You know, there is always going to be a doubt in your mind no matter what. How about this? Instead she is in her 20s, and you are thinking "oh, wow, if only I had started meds a couple of years earlier." That is just as likely to happen. It is really your choice. But if you go and look for things to say "it is a bad idea, why are you doing this to your child" you are always going to find them. And I am not saying to ignore them, because I don't. I take things into account and try to see if I can avoid some bad outcomes. But it is something where you and your husband are going to make a decision on your child's behalf, it is equally weighty to decide "yes" as to "no," and then you are going to either find out "this was a good idea" or "this was a horrible mistake" or "we don't really know if this was a good or bad idea, b/c maybe all the good things or bad things would have happened anyway." That is what I was getting at with comparing to a therapy I do, that has the SAME kind of "don't do it, you are a horrible parent, you only care about what is easy for you and not what is best for your child" kind of stuff. Oh, but it is also very, very mainstream. Like -- torture yourself with it all you want. I have certainly tortured myself with the same kind of information. And I have learned things that I think are very helpful, from this kind of information. But I know a few kids who are taking ADHD medication, and I know quite a few adults who took it, and I know quite a few adults who started taking it as adults. I don't think it is that big of a deal. Do you know my husband is in the Army? He is in the Infantry? Where do you think a lot of ADHD adults end up? In an active job with lots of outdoors stuff, doing an hour of group exercise 5 mornings a week? Yes. I think the young adults who had positive experiences in childhood and have a good self-esteem are in a better emotional place in a lot of ways, I would pick that. I don't know that I think they have better skills compared to somebody who never took medication. Either way they have a choice to take medication or not. Sometimes they don't want to take it, and then realize they need it for their job performance, and that is something they have to decide as young adults. Maybe they quit taking it in high school b/c they didn't want to, and their high school grades were lower, but it was what they needed to do for their own sense of "I make my own decisions." But really -- I think the positive experiences in childhood, in group settings, not being "the bad kid," not feeling like "I was a hard kid for my parents to deal with" which I have heard young adults say in a very guilty way that I think is sad to hear..... I do not face this decision with my kids, I have no recommendation for medication. But I think that having good experiences in childhood, feeling like you are not stupid, feeling like you are not bad, etc., this is also something that counts for a lot with a young person in their 20s. I also have hope kids learn more and build up more positive experiences with medication than without. I don't really know that I think kids are better or worse off as far as actual ADHD -- I think just with meeting people, and impressions, there is no difference. As far as being able to join the Army, I think the rules change back and forth maybe? I don't know, b/c I hear different things. A couple of years ago they were waivering a lot of things, and now they are more strict, so I don't know. I have heard things like they don't care, and I have heard things like you can't take any medication for one year before you join. I don't think you can have any medication during basic training. But in the Army -- I know people who are taking ADHD medication, and getting it from the Army doctor. So ---- maybe I have some huge misunderstanding, it is possible, but this is what I think. 8 Quote Link to comment Share on other sites More sharing options...
Lecka Posted January 21, 2016 Share Posted January 21, 2016 (edited) I am going to add, last year at my son's IEP meeting, there was *disagreement between people at the IEP meeting* who were *all school employees.* Like -- when *IEP team members* who all *work at the school* and *get along* and *like and respect each other* *do not agree* ----- well, fun times for the parents to make a decision!!!!!!!!!! I hate it!!!!!!!!!!!!!!! Well, too bad for me, I don't get an easy answer or an easy path to choose. There is *always* some difference of opinion, or else we see ------ this choice has some definite cons, and we have to decide, are the cons too bad, or are the cons acceptable. And there is nobody else to decide for us, we are the parents. Just remember -- the nay-sayers are Very Well-Meaning, and they want The Best for our kids, the same way we want the best for our kids. That is what everybody has in common -- wanting the best for our kids. But yes, there can be disagreement about what The Best Choice is. It is just one of those things -- I think it is inherent. We do not have an easy situation where there is an obvious answer, sometimes. But for everyone to agree, we all want the best for our kids, it is amazing how far that goes, even when there is disagreement about what the right choice is. We had disagreement last year about whether my son should repeat K or be promoted to 1st grade, and it is incredibly stressful, and both sides make extremely good points. Well, my husband and I are stuck making the decision, and pleasing some people, and disappointing some other people who will feel we are making the wrong decision. I hate it. But this year, the main person who recommended he repeat K told me "I can see he is doing well" and it was really, really nice of her, even if to some extent she is just acknowledging -- we all want the best for him, and you had to pick something. So I think I have just accepted -- we may have this ambiguity and we may also be making choices where there are two sets of pros/cons, and we are picking between two choices that both have pros/cons. We may not have a choice where we pick the right choice, maybe there just isn't an obvious right choice to make, we are just having to pick something and do our best to make the right choice. So I think -- if you are looking for certainty, that is just not an available option. Doing what you think is the best choice with the information you have, that is an available option. That is really what I have come to think for our situation. Like -- I have decisions right now where there is disagreement between members of the IEP team about whether my son is allowed to just play during recess, or if he should be having a social skills program during recess. This is an easy choice -- it is very easy for me as a parent to say "duh, let him play." I have no doubt about this decision, but still there are nay-sayers who think I am making the wrong choice. But not really like they blame me, they just would make a different choice if it was up to them. We all want what is best for him, and the people who disagree with me on that choice, also respect me and know I want the best for him, so I don't mind it. I minded a lot more with the K or 1st decision, b/c I did not feel like I knew the right choice to make. But my husband felt a lot more clarity on that, so that is good for me. Edited January 21, 2016 by Lecka 3 Quote Link to comment Share on other sites More sharing options...
nature girl Posted January 21, 2016 Author Share Posted January 21, 2016 You all make such good points, thank you. At this point, I don't think she has the skills to even begin to focus on EF techniques or any sort of behavioral/emotional regulation training. Zones has maybe opened a path for discussion, but she isn't at a place where she can look at herself objectively, see how she's reacting, and find the tools to help herself respond better. She starts showing "behaviors" whenever I try to talk about her feelings/size of the problem, etc., because it makes her feel uncomfortable and sends her brain reeling. At this point, behavioral therapy would be a disaster. So one place where I think meds might help, at least on some level, give her the ability to calm herself enough to internalize what I've been trying to work with her on all this time. Normally I think I'd say, let's try the meds, see if we can find something that works and where it gets us, and if the side effects are awful or it doesn't help her enough, we'll just stop. But there's another side of this too...I don't know much about her birth-family's medical history, especially her birth father. I know her birth mom has an uncle who's bipolar, and that she's suffered major depression. Both of these are risks for juvenile bipolar. It's been said in many places that meds can trigger bipolar, and then make it much harder to treat. After watching the video in the OP, I spent two nights researching, watching how severe JPD can be, and getting heart palpitations thinking What If??? What if I traded this moderately debilitating condition for something that could destroy her life? The chances probably aren't huge, but they're there. 2 Quote Link to comment Share on other sites More sharing options...
Lecka Posted January 21, 2016 Share Posted January 21, 2016 I think that is a really good point. I wonder, are those certain meds. Like -- are those meds ADHD meds? Or are those meds to treat depression? B/c I have an impression like it is certain meds, not just any med at all. But that is definitely a good point. Quote Link to comment Share on other sites More sharing options...
nature girl Posted January 21, 2016 Author Share Posted January 21, 2016 Stimulants, and at least one non-stimulant ADHD med (Strattera) have been linked to triggering bpd. The speaker in the OP actually says that the number of cases of jpd has skyrocketed since stimulants became popular, from something virtually unheard of to something linked pretty closely to ADHD as a comorbidity. (I'm not sure how true that is, but he at least seems sure that's what's behind the rise.) 2 Quote Link to comment Share on other sites More sharing options...
Guest Posted January 21, 2016 Share Posted January 21, 2016 (edited) nm Edited February 10, 2016 by Guest Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 21, 2016 Share Posted January 21, 2016 So you go back to analyzing and you say ok, if *not* meds, then what? What will you do to work on those things? You're not making headway with behavior right now using cognitive methods. My ds melted down the last time someone tried to do Zones with him, so I get what you're saying. And I'm talking a total rip out your hair, violent meltdown. That person isn't trying Zones on him again. ;) Really, for him stepping up the sensory input to lots more times during the day seems to be helping. And if you listen to Prizant's webinar, it actually makes sense why. The frequent sensory breaks are basically helping keep him regulated. I'm just saying it would be something to try. It's requiring more of that than I realized to keep him stable with the increased demands of more school work. And it's not even that our work is too hard or disliked, but just that with 3 SLDs he's working really hard all the time, no matter WHAT he's doing. The neurofeedback *may* be helping some of our anxiety and attention piece. I'm looking into l-theanine to see if that would be good. Don't laugh, but I'm even looking at Energems. Have you seen them advertised on tv? 1/3 the caffeine of a cup of coffee, some b vitamins, and some l-theanine. The stimulant of the caffeine would help with the impulsivity. The reviews on amazon have people saying the l-theanine is working well for their ADHD. L-theanine is naturally occurring in green tea, so you could just make her a cup of green tea and see what happens. I don't know, just some kind of in-between options. However I don't think the question of the meds has to be just a flat no based on the family history. They could try non-stimulant meds. You could try short-acting meds. I've never researched it, but is there a similar propensity with caffeine, or is it only the prescription stimulant meds? MANY people are self-medicating their symptoms with caffeine. It's socially acceptable, affordable... 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 21, 2016 Share Posted January 21, 2016 Stimulants, and at least one non-stimulant ADHD med (Strattera) have been linked to triggering bpd. The speaker in the OP actually says that the number of cases of jpd has skyrocketed since stimulants became popular, from something virtually unheard of to something linked pretty closely to ADHD as a comorbidity. (I'm not sure how true that is, but he at least seems sure that's what's behind the rise.) Or it has just become more ok to talk about bpd now that Glen Close's sister is out, etc. Diagnosis of EVERYTHING is up. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 21, 2016 Share Posted January 21, 2016 Or it has just become more ok to talk about bpd now that Glen Close's sister is out, etc. Diagnosis of EVERYTHING is up. There were some articles out recently about the CDC surveys that go out randomly across the nation every so often. They changed the order in which they asked certain questions, and they found that it changed the outcomes--I think maybe it had something to do with the flow of the questions and how it maybe steered people into one answer over another (not on purpose). Anyway, I think the same results were showing that there isn't an overall increase in the absolute number of diagnoses (all lumped together), but as criteria change and understanding changes, the numbers in each category of diagnosis rise and fall to adjust for better training and information. I can't remember what the name of the survey is, but we got one in 2015 (I think it takes a year or two to tally and publish results, analysis, etc.). Then we were sent a follow-up one, presumably because we triggered a data point that they wanted more information about. 1 Quote Link to comment Share on other sites More sharing options...
nature girl Posted January 21, 2016 Author Share Posted January 21, 2016 So you go back to analyzing and you say ok, if *not* meds, then what? What will you do to work on those things? You're not making headway with behavior right now using cognitive methods. My ds melted down the last time someone tried to do Zones with him, so I get what you're saying. And I'm talking a total rip out your hair, violent meltdown. That person isn't trying Zones on him again. ;) Really, for him stepping up the sensory input to lots more times during the day seems to be helping. And if you listen to Prizant's webinar, it actually makes sense why. The frequent sensory breaks are basically helping keep him regulated. We do a fair amount of sensory breaks, although it hasn't seemed to make much difference. And I'll admit, these days I wait for her to get squirrely before I suggest one, because she's not a fan of them. She likes swinging, but the other activities she used to find fun she now finds annoying. So we usually just break and chase each other around the house, without doing the heavy work she probably needs...On the other hand, I've come to believe that sensory isn't as big of an issue as I initially thought. She's not one of those kids who barrels into things (other than me and my husband for hugs), and I've started wondering whether the sensory diet we were doing only calms her because it wears her out. I'm just saying it would be something to try. It's requiring more of that than I realized to keep him stable with the increased demands of more school work. And it's not even that our work is too hard or disliked, but just that with 3 SLDs he's working really hard all the time, no matter WHAT he's doing. The neurofeedback *may* be helping some of our anxiety and attention piece. I'm looking into l-theanine to see if that would be good. Don't laugh, but I'm even looking at Energems. Have you seen them advertised on tv? 1/3 the caffeine of a cup of coffee, some b vitamins, and some l-theanine. The stimulant of the caffeine would help with the impulsivity. The reviews on amazon have people saying the l-theanine is working well for their ADHD. L-theanine is naturally occurring in green tea, so you could just make her a cup of green tea and see what happens. We've actually been using Suntheanine since September, and at first I was sure it was really helping her attention and calming her...Now I'm not sure if it's actually doing anything. We've seen improvements since last summer, but I think much of that has to do with the way I've been working with her now we have a diagnosis. I keep giving her a daily pill, because I'm scared of going backward. But I've missed days and haven't been able to see a difference. I'll have to look into the Energems. I don't know, just some kind of in-between options. However I don't think the question of the meds has to be just a flat no based on the family history. They could try non-stimulant meds. You could try short-acting meds. I've never researched it, but is there a similar propensity with caffeine, or is it only the prescription stimulant meds? MANY people are self-medicating their symptoms with caffeine. It's socially acceptable, affordable... ..I did try coffee on her once, as a whim, and a full cup did absolutely nothing to her, no jitteriness, but no calming either. (This is a 49 pound kid drinking a full cup of moderate-strength coffee and getting no reaction, which I guess shows something. But I don't feel comfortable giving her more than that, or doing it routinely. I mean, caffeine is a drug too! Or it has just become more ok to talk about bpd now that Glen Close's sister is out, etc. Diagnosis of EVERYTHING is up. Or more widely recognized, that's definitely a possibility. I think it's only been added to DSM in the past 15 years or so. Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 21, 2016 Share Posted January 21, 2016 So you go back to analyzing and you say ok, if *not* meds, then what? What will you do to work on those things? You're not making headway with behavior right now using cognitive methods. My ds melted down the last time someone tried to do Zones with him, so I get what you're saying. And I'm talking a total rip out your hair, violent meltdown. That person isn't trying Zones on him again. ;) Really, for him stepping up the sensory input to lots more times during the day seems to be helping. And if you listen to Prizant's webinar, it actually makes sense why. The frequent sensory breaks are basically helping keep him regulated. There are lots and lots of pre-requisite skills for using Zones. One big reason our behaviorist doesn't use Zones and the Social Thinking stuff more is that it needs more behavioral stuff underneath it for it to work with some kids. But again, it's aimed at a different professional audience and to be less technical, I think. Some parts of Zones was a no-brainer for my son, and some was really hard. He felt on the spot and kind of burdened when it exposed his weak areas without giving him a ready-made solution. I think that it's a great program, but he had enough self-awareness sometimes to feel futile about his ability to change, and what he needed was a proven solution already available when he reflected on those weak areas. Again, it overall a great thing for him to do, but to use it in a really active way, we'd need to tweak some parts with some help. I still think I'd like to get some training on it and use it more. 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted January 21, 2016 Share Posted January 21, 2016 (edited) nm Edited February 10, 2016 by Guest Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 22, 2016 Share Posted January 22, 2016 Kbutton, I think there's timeliness to things. Look at the materials from the lady doing YouCues. Those kids are your ds' age, and some of them are READY to make those kind of connections. My ds has only this year started noticing I'm places (joint attention). I just think some of these complex things have to wait. Right now I'm working on apologizing when prompted. It's a new skill for him and it can improve that awareness I think. So instead of just whomping into people, he's going to get a stop, apologize, do something to make it better sequence of prompts. That's new for him and not something he was ready for before. Methinks we have a Long Journey, sigh. AM, that's interesting to hear about your experience with the l-theanine! And wow, that's the weight of my ds, 50 pounds. Without the ADHD, you would have expected a dc (if they ordinarily get no caffeine) to get quite the buzz off that. It would take 3 energems to hit that and more to go higher. I'm reading in various places that the l-theanine counteracts or somehow tames some of the effect of the caffeine. Is it possible that the l-theanine dose is so high by her weight that it really could negate a high dose of caffeine? I don't know, just saying it's an interesting question. Like if you went off the l-theanine for two weeks and then tried caffeine again, might be interesting to see what happens. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 22, 2016 Share Posted January 22, 2016 I'll have to look at YouCues. I just buzzed the website. My son has done a lot of categorizing feelings and faces. He used to have just two categories--positive and negative--for looks, words, tone of voice, etc. It's helped a lot. 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted January 22, 2016 Share Posted January 22, 2016 (edited) nm Edited February 10, 2016 by Guest Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 22, 2016 Share Posted January 22, 2016 Oh I agree, ds doesn't understand *why* he's doing things yet. We had to have the "you MUST apologize if your coach tells you to" talk a year ago, when he was in an accident that left another child injured and him just standing there going "he went the wrong way." Mucho bad for vibe in class, lol. So there are some things we have to require even before he understands. I haven't really even made it an issue except in that one setting. Now that he can ask a question when prompted (because we've been working on that HARD and making it a hill to die on, you will, I'll wait, nothing happens till you do, fine have a meltdown and then you will), now I'm like ok maybe we can build on that momentum and require at least some verbal acknowledgement when it's pointed out that what you did was inappropriate. Sigh. Total rabbit trail. I'm sure something will go wrong with our efforts, lol, but we try. I'm STILL trying to figure out what you can do therapeutically to work on impulsivity. It just does not make sense to me not to be able to work on it AT ALL. We work on vision with VT and make pathways in the brain. We do things with midline and make pathways through the corpus collosum. So why can't we make pathways and get some development in the portion of the brain controlling the impulsivity?? Because that, for him, is where his current apologizing is. Like wham, sorry I whammed you. Rinse and repeat during the day. So, so impulsive. But that's always AFTER the fact. We OUGHT to be able to create scenarios allowing for impulsive (incorrect) and inhibited (correct) responses to target that part of the brain. Oh, I forgot, there was some software trying to do that! But it was kind of hokey. It was that C8Sciences or something, I forget. Did I have dd doing that or ds? Probably dd? I can't remember. They did some impulsivity/inhibition exercises where they'd put through false targets that you had to skip. So I'm SURE it's possible to work on this. Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 22, 2016 Share Posted January 22, 2016 Oh I agree, ds doesn't understand *why* he's doing things yet. We had to have the "you MUST apologize if your coach tells you to" talk a year ago, when he was in an accident that left another child injured and him just standing there going "he went the wrong way." Mucho bad for vibe in class, lol. So there are some things we have to require even before he understands. I haven't really even made it an issue except in that one setting. Now that he can ask a question when prompted (because we've been working on that HARD and making it a hill to die on, you will, I'll wait, nothing happens till you do, fine have a meltdown and then you will), now I'm like ok maybe we can build on that momentum and require at least some verbal acknowledgement when it's pointed out that what you did was inappropriate. Sigh. Total rabbit trail. I'm sure something will go wrong with our efforts, lol, but we try. I'm STILL trying to figure out what you can do therapeutically to work on impulsivity. It just does not make sense to me not to be able to work on it AT ALL. We work on vision with VT and make pathways in the brain. We do things with midline and make pathways through the corpus collosum. So why can't we make pathways and get some development in the portion of the brain controlling the impulsivity?? Because that, for him, is where his current apologizing is. Like wham, sorry I whammed you. Rinse and repeat during the day. So, so impulsive. But that's always AFTER the fact. We OUGHT to be able to create scenarios allowing for impulsive (incorrect) and inhibited (correct) responses to target that part of the brain. Oh, I forgot, there was some software trying to do that! But it was kind of hokey. It was that C8Sciences or something, I forget. Did I have dd doing that or ds? Probably dd? I can't remember. They did some impulsivity/inhibition exercises where they'd put through false targets that you had to skip. So I'm SURE it's possible to work on this. Could you reframe it in a positive (we do this) rather than negative way (we don't do this) when talking about running, zooming, etc.? I had a rule when my older son was little--he was allowed to spit in the sink and in the grass. Maybe he needs more instruction on when he can do certain things. It sounds to me like you are not asking for help with impulsivity so much as asking for self-awareness. If he's lacking awareness, you might have to work not just on complying but on when certain behaviors are okay and then pointing out that those are the only times those things are okay. So, zooming is only okay in this place when you've looked both ways. YMMV 1 Quote Link to comment Share on other sites More sharing options...
nature girl Posted January 22, 2016 Author Share Posted January 22, 2016 AM, that's interesting to hear about your experience with the l-theanine! And wow, that's the weight of my ds, 50 pounds. Without the ADHD, you would have expected a dc (if they ordinarily get no caffeine) to get quite the buzz off that. It would take 3 energems to hit that and more to go higher. I'm reading in various places that the l-theanine counteracts or somehow tames some of the effect of the caffeine. Is it possible that the l-theanine dose is so high by her weight that it really could negate a high dose of caffeine? I don't know, just saying it's an interesting question. Like if you went off the l-theanine for two weeks and then tried caffeine again, might be interesting to see what happens. Ooh, that's an interesting thought! I'd read on reviews that it helps counteract the jitteriness of caffeine, and I know they often put the two together in one pill, but somehow the idea never clicked in my mind that this might be what's going on with Anna. People still get the positive effects of caffeine when they take the theanine thought, right? The focus and awakeness? With Anna there was absolutely no change. IDK, but it's definitely worth trying. And I guess by taking her off Suntheanine for awhile I'll be able to see if it really is making any difference. (That stuff isn't cheap, so it would be good to know.) I'm STILL trying to figure out what you can do therapeutically to work on impulsivity. It just does not make sense to me not to be able to work on it AT ALL. We work on vision with VT and make pathways in the brain. We do things with midline and make pathways through the corpus collosum. So why can't we make pathways and get some development in the portion of the brain controlling the impulsivity?? Because that, for him, is where his current apologizing is. Like wham, sorry I whammed you. Rinse and repeat during the day. So, so impulsive. But that's always AFTER the fact. We OUGHT to be able to create scenarios allowing for impulsive (incorrect) and inhibited (correct) responses to target that part of the brain. Oh, I forgot, there was some software trying to do that! But it was kind of hokey. It was that C8Sciences or something, I forget. Did I have dd doing that or ds? Probably dd? I can't remember. They did some impulsivity/inhibition exercises where they'd put through false targets that you had to skip. So I'm SURE it's possible to work on this. That's one of Anna's biggest problems too, although she's probably not quite this impaired she definitely has a hard time becoming aware of what she's about to do before she does it. Things like chasing the cat, scribbling on her work, grabbing for hot food off the stove, all these things are huge issues. She also used to hit or bite us, or throw sand on other kids, without any understanding of why. I'd ask her what was going through her mind, the reason behind it, and she'd look completely bewildered. (She still gets in physical fights at times when she's upset, even over small stuff, but it's nowhere near as random as it was a year ago.) I've had this book in my cart for awhile, there are pages on Google Preview if you want to see what the exercises look like. DD isn't quite ready for them yet, but I may get the worksheets this year and try to tailor them more to her level. http://www.amazon.com/Impulse-Activities-Worksheets-Elementary-Students/dp/1598500597/ref=sr_1_1?s=books&ie=UTF8&qid=1453427586&sr=1-1&keywords=impulse+children Quote Link to comment Share on other sites More sharing options...
nature girl Posted January 22, 2016 Author Share Posted January 22, 2016 Just did a quick search and found this: Combined, the two actually synergize to bring you a clean, calm and lucid focus that is unparalleled by any other mundane drug or energy drink combination. Unlike caffeine on its own, the combo improves focus and doesn’t leave you dead tired in a hard crash afterward, or crippled by a panic attack. The GABA agonist action of theanine turns down the “gain†knob on the caffeine without compromising its desired effects. So she should at least be feeling a calm focus. I don't know, maybe she was feeling different but didn't show me through her work? I might have to test her with a sheet of math problems or something else that's impossible for her to get through normally. The hyperactivity and loudness didn't decrease at all though (which I guess is what I was looking for), but maybe that wasn't a realistic expectation. Quote Link to comment Share on other sites More sharing options...
Guest Posted January 22, 2016 Share Posted January 22, 2016 (edited) nm Edited February 10, 2016 by Guest Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 22, 2016 Share Posted January 22, 2016 Could you reframe it in a positive (we do this) rather than negative way (we don't do this) when talking about running, zooming, etc.? I had a rule when my older son was little--he was allowed to spit in the sink and in the grass. Maybe he needs more instruction on when he can do certain things. It sounds to me like you are not asking for help with impulsivity so much as asking for self-awareness. If he's lacking awareness, you might have to work not just on complying but on when certain behaviors are okay and then pointing out that those are the only times those things are okay. So, zooming is only okay in this place when you've looked both ways. YMMV His impulsivity is high and fast-paced. It's not even necessarily repeated, predictable behaviors. It will just be flash, the idea or whatever, and it's HAPPENING, with no filter, no pause, no ability to stop it with my words. Kinesthetic, automatic, superfast. And I don't even mind. Like, to me, home is where you get to be yourself. I don't allow damage, but I don't have picky rules about the couch, where we run, anything. What Joyce Show's book was saying (and what Geodob seems to be saying) is that this impulsivity is in a part of the brain. So I just keep thinking that if we can target so many other parts of the brain, it should not be impossible to target this. I'm just not having brilliant moments or success figuring out how. But it ought to be possible. And the word is *inhibition*, which I think is the opposite of impulsivity. So he either is responding impulsively or inhibiting that response. Just need to google it some more. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 22, 2016 Share Posted January 22, 2016 AM, have you read Joyce Show's book yet? It's Teaching Your Child with Skill and Love. She has a whole chapter on aggression and meltdowns. I just found the book amazingly encouraging, useful, and applicable. You really might like it. Our library has it. Yeah, I think given that ADHD kids are going to respond to caffeine inverse anyway, you really can't bank too much on claims of how the l-theanine plays in. Thanks for that workbook link. I'll go look at it. What I have in my mind are inhibition exercises, where you're basically showing targets that are INCORRECT in a slapping game so they have to inhibit and process, not just slap impulsively. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 22, 2016 Share Posted January 22, 2016 Ok, do you *have* this workbook? I'm googling and turning up older kids, targeting 3rd-5th grade, etc. I really think cognitive is not the way in right now. I'm thinking more like some actual activities. Simon Says, for instance. Yes, Simon Says would be a PERFECT example! Or maybe a tapping app on the ipad to work on inhibition. And then just work on these things 5-10 minutes a day and let it accumulate. And then maybe do it while making the sensory situation more complex. Like play Simon Says, but put on the radio, have them chew gum... So they're motor planning, dealing with sound, etc. etc. Just thinking out loud here. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 22, 2016 Share Posted January 22, 2016 http://blogs.scientificamerican.com/frontiers-for-young-minds/stop-how-we-inhibit-acts/ http://www.cambridgecognition.com/tests/stop-signal-task-sst Quote Link to comment Share on other sites More sharing options...
nature girl Posted January 22, 2016 Author Share Posted January 22, 2016 (edited) I work impulsivity with a cause and effect approach. We are still working on it but I have seen noticeable differences. Could you elaborate a little on that, Cricket? What do you actually do? AM, have you read Joyce Show's book yet? It's Teaching Your Child with Skill and Love. She has a whole chapter on aggression and meltdowns. I just found the book amazingly encouraging, useful, and applicable. You really might like it. Our library has it. Yeah, I think given that ADHD kids are going to respond to caffeine inverse anyway, you really can't bank too much on claims of how the l-theanine plays in. Thanks for that workbook link. I'll go look at it. What I have in my mind are inhibition exercises, where you're basically showing targets that are INCORRECT in a slapping game so they have to inhibit and process, not just slap impulsively. I haven't read the book, but our library has it. Looks like it's primarily for autism, but I like the tone of it, and I'm sure I could find parts that are applicable to us. As far as the Impulse workbook, I don't have it, but from what I remember it actually is primarily exercises and games and role-play, rather than worksheets. (I actually saw parts of it through Google Books, but for some reason can't find those pages now.) Yes, it's for kids who are slightly older (and more self-aware) but I'm wondering whether I can take some of the exercises--they're supposed to be fun--and tailor them to her level. I don't know though...Can games really develop a part of the brain that's underdeveloped? Is it that simple? Anna had an impulse control test similar to the one you linked above as part of her neuropsych eval, and actually came out average. The doc said it doesn't really translate to real life, in the moment stuff though (where I know Anna has big issues.) So I wonder if teaching inhibition through games would translate, develop new pathways, or just teach them to be better at those particular games. I wish there was more research, it's such an important skill, really for our kids', their friends' and family's safety. Edited January 22, 2016 by Anna's Mom 1 Quote Link to comment Share on other sites More sharing options...
nature girl Posted January 22, 2016 Author Share Posted January 22, 2016 You know its crazy, there are some days Anna seems so neurotypical, maybe 2 or 3 days a week. Tuesday and today, she's been so very calm and quiet, not climbing on me, not getting upset when something frustrates her, just acting like your typical 6 year old. And the other days, like yesterday, she's just all over the place. On days like today, I'm even able to do extended schooling, she's currently at the desk writing a little book report because she WANTED to, which she never would have sat still for yesterday. So what is it??? I've looked at diet, but we eat similar things every day so I don't think that's it. If I could bottle up whatever hormones are going through her body today, to use them on the bad days, I'd never even remotely consider meds. The other thing with Anna, is she's able to be still when she wants to be. I mentioned awhile back that she sometimes pretends to be one of her friends who's extremely shy. She can go for an hour or more pretending to be this other girl, and she's quiet (only speaks in whispers) and still and polite. (It's very pleasant!) So she has the ability to restrain her emotions and natural impulses somehow, I just don't get it. But it gives me hope that at some point I'll be able to teach her to be calm and regulate emotions, that she has the capability if she actually puts effort into it. Quote Link to comment Share on other sites More sharing options...
geodob Posted January 22, 2016 Share Posted January 22, 2016 The ability to inhibit 'impulses', is typically developed by around the age of 6. The crucial part of the brain involved with this, is the 'Amygdala'. Which sits just behind our pre-frontal cortex. The primary role of the Amygdala, is with processing emotions. Where it also regulates our physical response, to different emotions. For an example of this? You might consider your physical response, as you see a large spider right next you? Or that you are about to step on a snake? Or the appearance of a mouse? Which will happen instantly/ impulsively. You wont stop and think, that this is a spider, snake or mouse? Rather what happens? Is that the Amygdala has an instant emotional response. In this case, 'fear'. Which in turn, triggers an instant physical response. That we have no control over. But the crucial thing here, is to separate the 'physical response',? From the Amygdala's 'emotional response'. So that in terms of our discussion here about 'impulsivity' ? Which we observe as a 'physical action'? It is not the 'physical action', that needs to be inhibited? But rather the 'emotional response'. In same way, that you might have had an experience with a 'snake handler'? Where they helped you overcome your emotional and physical response to the snake, and touch it? Or let a harmless spider, crawl across your hand? Where at first, you might try to inhibit your impulsive physical response, to the spider, snake or pet mouse? But what you will then observe, is the change in your emotional response? As you no longer 'Fear' the spider, snake, mouse. So that what I would highlight, is the difference between 'inhibiting the physical response'? And, 'inhibiting the emotional response'? Where this 'inhibition of the emotional response', will happen in the Amygdala. So that the 'physical response/ impulse', isn't triggered. But what this raises, is a way to practice gaining control and awareness of the Amygdala and Impulses? Perhaps using 'Snake and Spider Therapy'? I recall the first time that I held a snake, and let it wrap itself around my arm. Where what surprised me most, was that I could inhibit a negative physical impulse to it? As I became aware that I could control this impulse, to pull away from the snake. So that basically what I'm suggesting? Is an approach that involves experiences, where one becomes aware of their ability to overcome these impulses? That exercises the Amygdala. 2 Quote Link to comment Share on other sites More sharing options...
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