PeterPan Posted December 31, 2020 Share Posted December 31, 2020 I'm looking into the Sensory Connection Program curriculum by Karen Moore. She's trying to bridge interoception concepts into the mental health field, so you're making a crisis intervention plan/notebook, creating your own toolkit of strategies, etc. I think it's places we might get to eventually but we could get there faster with the actual tools/discussion specific to dealing with serious mental health and emotional issues. Apparently they're using it in check in programs for mental health, and she has some things I hadn't seen before, like trigger icons. https://www.youtube.com/watch?v=IhA8AISK-XM&list=PLUwHvsfR4gZOS0ePuzWVfaok8l6M_9OZl This is a youtube playlist of very short clips where she explains the jist. http://sensoryconnectionprogram.com/resources.php this is her resource page with all kinds of good links, including those icons. They're listed as Safety Tools and the MA DMH has them for multiple levels (nonverbal icons to verbal questionaires for teens and adults). https://www.therapro.com/The-Sensory-Connection-Program-Curriculum-for-Self-Regulation.html The curriculum. 3 Quote Link to comment Share on other sites More sharing options...
Lecka Posted December 31, 2020 Share Posted December 31, 2020 This sounds like a good program! 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 1, 2021 Author Share Posted January 1, 2021 https://reachcounseling.com/wp-content/uploads/2017/03/Sensory-Connection-to-Trauma-and-Treatment-in-Youth-Karen-Moore.pdf A pretty generous overview pdf. There's an intriguing Ball of Responsibility game on her free resources page that people might find useful. It would work for anything, but she's suggesting it for prethinking situations. (who has what responsibitilies in the situation) Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 1, 2021 Author Share Posted January 1, 2021 7 hours ago, Lecka said: This sounds like a good program! Yup, the more I dig in the more it's right where we live, really, really practical. It's bridging the gap from we need to feel our body to we can take responsibility for our emotions and have a plan. And it's sort of implied in phases 2 and 3, but this OT is doing inpatient treatment so she's working with it a lot, sigh. It's making things gel in my mind that I had sorta figured out but not really gotten to. I *think* I'm going to buy the curriculum, both because it's her newest product and because it's the older target (adolescent/adult). I could wish for the picture guides in the original manual, but I'm not sure it's worth the extra money. This seems to be the evolution of her thinking on where it all comes together. You build the awareness with the interoception materials, but then you have to OWN it and shoe leather it. I'm getting there sort of randomly on my own for myself, and it's taking several years. And that's with ADULT LEVEL maturity! So to have a curriculum that says let's really make a game plan, let's not leave it to chance, here are the steps to connect from feeling your body to stabilizing your mental health, this seems really wise to me. That and it's very apparent we're dealing with teen years. I'm looking for ANYTHING to help at this point. The counselors tend to be all words, words, words at someone with a language disability and then tend to make assumptions that things will just magically happen because they talked about them. There has to be a lot more shoe leather to it, with really intentional plans and follow up. We might fail even with that, but we're going to try. Sometimes my efforts don't seem to work at first but do sorta sink in over the long run. I've started seeing that, where seeds I planted years ago are bearing fruit now for things like flexibility, trying new things, etc. So maybe if we can plant some mental health seeds, we can grow some fruit eventually. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 1, 2021 Author Share Posted January 1, 2021 https://reachcounseling.com/wp-content/uploads/2017/03/Understanding-the-Senses-and-their-Potential-for-Treatment-Karen-Moore-OTR-LM.pdf pdf handouts from workshop series 1-3 on the technique. Lots of pictures 1 1 Quote Link to comment Share on other sites More sharing options...
popmom Posted January 4, 2021 Share Posted January 4, 2021 (edited) @PeterPan I wish I had as much mental energy as you do! I should dive into this. I have one with Bipolar 2 and two with Binge Eating Disorder. You think it's worth my mental energy? Because just living with these precious people is draining as it is. Well, one has launched, but there are visits and lots of phone conversations. I have spent so many years doing all the things. Doing all the research. Making and taking to all the appointments. Filling out all the intake forms. I know you get it. I'm just too burned out right now to do any more research. Everyone is relatively stable right now--after going back to square one with the BED because of COVID. I'm so glad I'm not preparing and plating every meal and snack anymore. lol I think I'll save the youtube videos on my account and revisit later. Thank you for sharing! Edited January 4, 2021 by popmom 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 4, 2021 Author Share Posted January 4, 2021 16 minutes ago, popmom said: I wish I had as much mental energy as you do! Haha! Don't admire it to much. In truthful disclosure, I usually do one thing to the exclusion of a lot else. So I might not be cooking or cleaning or doing other things you admire. 27 minutes ago, popmom said: Bipolar 2 and two with Binge Eating Disorder. So I don't want to play expert on those. I'll just tell you what the programs are trying to do and you sort it out. https://www.kelly-mahler.com/what-is-interoception/ Goal is to improve self awareness of body signals so they can realize their hypostatic and affective emotions. This allows them to make choices that keep themselves feeling better and realize/problem solve when they don't. http://sensoryconnectionprogram.com Goal (not having used it yet) is to help people connect the dots between their challenging behaviors and their sensory needs. The theory is that sensory works when the cognitive breaks down. It spells out explicit steps (best as I can tell) for creating a crisis plan and dealing with major behaviors that can respond to sensory interventions. You probably already know this, but Vyvanse is on label for eating disorders. I *do* think there is a connection between eating disorders and sensory, so you're not off track asking. It could be direct (realizing how your stomach feels), but it could also be more indirect (not realizing your emotions and why you're solving them that way). So for instance with anxiety and eating for anxiety, increasing interoception would help that awareness and they could change their approach. But whether that's *your* specific need, dunno. Kelly Mahler does have her Interoception Assessment forms. They are maybe $35 now for a pack of 10, and it's easy for you to administer. If you already know they have self awareness issues, you needn't bother. But if you're not sure, it would be a way to screen. Some OTs are working on a standardized tool for interoception, but I doubt it's out yet. Did either of these children have trauma? Fwiw, I think sometimes the therapies are *really really close* if that makes sense. Like they're all saying the same thing, whether you hit CBT or DBT or Interoception or this other woman with her sensory connections or another program. They're not so so far apart. What distinguishes them is the starting point, the assumptions. So CBT assumes that if I walk up to someone and have a rational conversation about the topic they can process the language, be self aware, and organize their lives to apply it. So if you have language issues, self awareness issues, or EF issues, suddenly the therapy breaks down, kwim? But any time you have a normal IQ or higher, you're wanting these cognitive based strategies. If they're not working, the question is WHY, what the assumptions were, what deficits the dc has that is making him so he can't access/connect/apply, kwim? So my ds has ALL those deficits. He's going to shut down with too much language. He had significant issues with interoception. And his EF and immaturity will mean he fails mostly to follow through. So I think that's always the challenge for me and why I keep looking. I have people wanting to talk at my kid, and that doesn't back up enough to bring the good concepts into reach. But if a kid needs a *med* to bring them to where they can connect and have that conversation, that's important too. If you want the free path, look for youtube videos on whatever you're considering. Most of these fancy people will have clips of them giving presentations or powerpoints online of workshops they've given. That will give you a good sense of whether their materials would be helpful. Go with your gut. If you're not sure about the self awareness, https://www.aapcautismbooks.com/products/interoception-assessment-forms?_pos=1&_sid=fb4ae9c1d&_ss=r&variant=23029042118704 these are the forms. If your dc is able to say what they're feeling, explain how they know they're feeling that way (what their body is doing), AND apply it to other people, that's probably not an issue for them. 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 4, 2021 Author Share Posted January 4, 2021 Also a totally random aside, but my own sort of endless mindless eating seems to respond to anxiety meds. I had some other longstanding issues (I'm forgetting the name, some picking, etc.) that responds to the meds. However we ran genetics on me and when I was digging there was this defect I'm homozygous for that is an *uncommon* cause of anxiety. I started the treatment for it several weeks ago (ironically just a simple form of ready to go B6 called P5P) and WOW what a difference! My thyroid is up, my energy up, and I *have not needed the anxiety med* since. It's honestly astonishing. So if you're asking about genetics of bipolar and why siblings (who may be 50% similar) are getting different labels with very similar genes, that's very interesting stuff. There's such a strong overlap between a lot of labels (ASD, bipolar, schizophrenia, eating disorders, anxiety). If you happen to have genetics on them, you could dig in there and see if there's a treatable component. I'm not med averse, but I'm real happy, after all these years, to have an explanation that actually feels right and digs in on it and treats it, kwim? I wasn't unhappy with the anxiety med, but I'm happier with the targeted treatment. But I get it. Sometimes digging in on genetics feels like praying over a pile of voodoo dolls and hoping somehting happens. That was a really bad mixed metaphor. I just get that it's hard. I usually research and google a while and then stop for a month or two. I just came across a site a month ago http://www.mensahmedical.com/pyroluria-pyrrole-disorder/ and that sparked me googling for new things, looking for new genes. The anxiety for me did indeed connect back to this pyrrole disorder. The gene they look at is specifically for the B6 and mine was homozygous defective, sigh. I started the correct form and it was like night and day. I had had so many problems with my memory and that's even getting better. I'm still working on dose. Too much and it can keep you up. But it's so nice to have my memory working better. I even DREAM at night, which I didn't use to. Isn't that wild? So if you wanted to just kind of toss it out there, like who could help you sort this out if you wanted to go at genetics and get some really different answers, I think that kind of doctor (studied under Walsh, blah blah) would be what you're looking for. I'm not saying go to this guy or that I've been. I'm just saying there are professionals doing it if you want a really different answer and I don't want to make it sound like any ONE THING is it. I want lots of tools in my tool box, so I want cognitive AND meds AND sensory AND... kwim? 1 Quote Link to comment Share on other sites More sharing options...
popmom Posted January 4, 2021 Share Posted January 4, 2021 Thanks. That makes a lot of sense. Both dd with BED have tried Vyvanse. The older one quit because it made her too anxious. Youngest dd is doing well on it. It definitely helps, but it's not a miracle cure. My youngest who also is autistic actually has better self awareness and EF than her older sister. She has an ADHD diagnosis, but looking at her WAIS scores I think she is on the spectrum, too. Super brilliant kid scores a perfect 36 on the English portion of the ACT, 35 on the reading, but is "borderline" in processing speed. That paired with the knowledge I've gained since youngest was diagnosed, I see it now. Quote Link to comment Share on other sites More sharing options...
popmom Posted January 4, 2021 Share Posted January 4, 2021 7 minutes ago, PeterPan said: Also a totally random aside, but my own sort of endless mindless eating seems to respond to anxiety meds. I had some other longstanding issues (I'm forgetting the name, some picking, etc.) that responds to the meds. However we ran genetics on me and when I was digging there was this defect I'm homozygous for that is an *uncommon* cause of anxiety. I started the treatment for it several weeks ago (ironically just a simple form of ready to go B6 called P5P) and WOW what a difference! My thyroid is up, my energy up, and I *have not needed the anxiety med* since. It's honestly astonishing. So if you're asking about genetics of bipolar and why siblings (who may be 50% similar) are getting different labels with very similar genes, that's very interesting stuff. There's such a strong overlap between a lot of labels (ASD, bipolar, schizophrenia, eating disorders, anxiety). If you happen to have genetics on them, you could dig in there and see if there's a treatable component. I'm not med averse, but I'm real happy, after all these years, to have an explanation that actually feels right and digs in on it and treats it, kwim? I wasn't unhappy with the anxiety med, but I'm happier with the targeted treatment. But I get it. Sometimes digging in on genetics feels like praying over a pile of voodoo dolls and hoping somehting happens. That was a really bad mixed metaphor. I just get that it's hard. I usually research and google a while and then stop for a month or two. I just came across a site a month ago http://www.mensahmedical.com/pyroluria-pyrrole-disorder/ and that sparked me googling for new things, looking for new genes. The anxiety for me did indeed connect back to this pyrrole disorder. The gene they look at is specifically for the B6 and mine was homozygous defective, sigh. I started the correct form and it was like night and day. I had had so many problems with my memory and that's even getting better. I'm still working on dose. Too much and it can keep you up. But it's so nice to have my memory working better. I even DREAM at night, which I didn't use to. Isn't that wild? So if you wanted to just kind of toss it out there, like who could help you sort this out if you wanted to go at genetics and get some really different answers, I think that kind of doctor (studied under Walsh, blah blah) would be what you're looking for. I'm not saying go to this guy or that I've been. I'm just saying there are professionals doing it if you want a really different answer and I don't want to make it sound like any ONE THING is it. I want lots of tools in my tool box, so I want cognitive AND meds AND sensory AND... kwim? That is facinating! Am I'm so glad the B6 seems to be the ticket! The genetics is really facinating to me. DD with Bipolar 2 has an identical twin. A couple of us have done 23 and me, but I really want my twins to do it and my youngest. Middle child has done it, but I haven't done much with the info. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 4, 2021 Author Share Posted January 4, 2021 So ds is heterozygous for the pyrrole disorder issue which affects b6 and zinc levels. He was clearly zinc deficient. I put him on it, and he's now on HALF the Buspar dose he had been on before. Pretty wild. And he's more stable. I pulled him off the zinc because he was starting to have symptoms of too much. I'm just going to watch it at this point and give him small maintenance amounts later. He just has a lot in his system right now. But it has been pretty amazing. 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 4, 2021 Author Share Posted January 4, 2021 https://www.drlamcoaching.com/adrenal-fatigue/complications/pyroluria-afs/ I'll look for the gene for you and get you the RS. Then you can check it easily in your raw data. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 4, 2021 Author Share Posted January 4, 2021 gene NBPF3 and the RS4654748 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 4, 2021 Author Share Posted January 4, 2021 6 minutes ago, popmom said: Middle child has done it, but I haven't done much with the info. gene NBPF3 and the RS4654748 You can download the raw data from 23andme and then look for that RS number. You can run it through promethease and save the whole huge html file, which will make it searchable later. You can run it through knowyourgenetics.com and see about methylation, D, etc. There's another interesting gene for TPH2 that affects 5HTP levels. That's the precursor to serotonin and melatonin. 1 Quote Link to comment Share on other sites More sharing options...
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