Social Thinking Conference - worth my time/money?

[BooksandBoys]

I Social Thinking is coming to my city in May, and I’m wondering if any of you have attended their conferences. I think I want to attend the day they covers the Social Detective/Superflex curriculum. I almost buy that curriculum every few months and talk myself out of it. 

Any thoughts on their conferences? Worth my money (it’s expensive for me) and time? 

Thanks!!

 

edited for autocorrect errors 

Edited November 28, 2018 by BooksandBoys

[Lecka]

https://www.socialthinking.com/eLearning/categories/FreeWebinars

First, here's their free webinars.  I have watched several of these.

Okay, I have never been to theirs.  

I have been to a different autism conference, though.

For the one I would go to, the first thing to consider, is that most of the people there were getting CEUs.  (Continuing Education Units).  It's a given for them, they (or their employer) is going to spend money on CEUs.  I don't know if that will be the case, but that was something new to me.

For the one I went to (I went twice I think, maybe three times), I did get some real nuggets.  But, I didn't necessarily get stuff that was pertinent to me at that moment.  I got more things that were like "oh, that's really good to know for the future," or else "oh, now I understand some things other parents say that don't make any sense for us."  

I also found it very special to be somewhere that everyone cared about autism and wanted to provide great quality instruction and supports.  That was the best part for me.  It was also a day that I got babysitting for my kids, and that was something I did very, very rarely at the time, so it would be a bit of an adult day for me, which would be really nice.  

The best nugget I ever got was from a speech therapist about answering reading comprehension questions.  She showed data comparing answering literal or non-literal questions, and she showed data where kids were just garbage with non-literal questions for a long time, but then, started being able to answer non-literal questions.  That was really inspiring for me to think kids can improve with non-literal questions even if they start out seeming unable to do it.  That honestly meant a lot to me.  But it would have meant the same if I had seen it at my own home on a webinar.  

I used to watch a lot of youtube videos of presentations at autism conferences, there is a lot of stuff that is on youtube.  So I don't think you "have" to go, or that you would get information you couldn't get otherwise.  But I do think it could be a good experience.

Then, do you think you might ask questions?  I never really would do that, but sometimes that can be a thing, that people can ask specific questions about their kids.  There might not really be time for that though, its hard to say.  

Also, they may sell things at a discount at the conference.  If they have a vendor hall or something, there may be discounted stuff, it might be a consideration.  I never bought anything at the vendor hall, though.  

But if you don't have a feeling like "cool, I think I want to go," I think maybe watch the webinar "How to use Social Thinking materials to teach ages 8-11," it says it's about Superflex, you can see what you think.  

The other thing is, if you go, and it's a lot of people who already use the materials, and are asking questions to improve their use, and you haven't really seen the materials they are talking about, it might be a little boring.  It would be to me, I need to have seen things first.  

I don't know if you can tell or not, if it seems like the kind of thing where there's going to be a lot of speech therapists, ABA therapists, school special education teachers, school aides, etc., there.  That was about 80% of the people at the autism conference I went to.  You might be able to tell from the enrollment information if they mention that or say anything about CEUs on there. 

That might have been more something at the one I went to, I don't know.  Mine was a generic autism conference with all kinds of topics and then a keynote speaker (a national or at least regional speaker/author) who would also have sessions.  

Edited November 28, 2018 by Lecka

[PeterPan]

6 hours ago, BooksandBoys said:

I Social Thinking is coming to my city in May, and I’m wondering if any of you have attended their conferences. I think I want to attend the day they covers the Social Detective/Superflex curriculum. I almost buy that curriculum every few months and talk myself out of it. 

Any thoughts on their conferences? Worth my money (it’s expensive for me) and time? 

Thanks!!

 

edited for autocorrect errors 

Ok, I've been to quite a few of the ST workshops with MGW. Which sessions? And you're saying you're just looking at one day? It's true that schools will sometimes pick one day or another, but I also see it happen that parents will make great effort, come to one particular day, and have that day be the one that was sort of the conceptual set-up for the other day, if that makes sense. So if you could tell us the city/listings, I'll look at it. I think it also matters how it relates to your kids.

Are you the type who does really well reading and learning from a book? I like to think I would, and sometimes I do. Other times, going to a session really gives me some momentum and pulls it together and I GET it finally and can apply it. So I'm kind of a bit of both.

If you go, they'll have the materials at the booth 10% off. So like if you were planning on buying a few things totally 150, you'll get I think it's 10% off and pick it up right there, no shipping. Also, I don't know if you realize this, but the sessions I've gone to all include morning tea, a VERY generous lunch, and a mid-afternoon dessert snack time. So like if you were thinking you'd need to go out to eat, etc., no they're giving you food in that too. Things for professionals are uber-generous on the food because frankly some of the people don't want to be there. It will include cheesecake, really nice stuff! You're gonna feel spoiled. :)

What do you want to make happen with your kids? What area are they needing help with? Is this a situation where they'd go through Social Thinking Detective or Superflex and be done, or are they gonna be whole enchilada kinda kids? Some kids really do pick up the cluephone that quickly. 

I haven't watched the new webinars, but I'm sure they're great stuff. What you could do is watch the webinars that are out and then compare them to the coverage of the sessions you'd be going to. They'll usually list what will be covered in the sessions. (By the end of this class, participants will be able to...) Look at that list, because that's literally EXACTLY what they're going to do and accomplish.

For me, by going to the sessions things started to click in my mind. The overlap was good and the reinforcement. It just pulled it together so I could make more connections. For my ds, he benefits from that social thinking integration across the board, so it was good for me. Would the webinars have been the same? I don't know. I agree on the CEUs issue. Parents pay a dramatically reduced price and don't get CEUs. 

I think if you're good at picking up printed materials and just plain using them, then watch the free webinars and buy the materials. If you're the type who buys things and does better with someone else walking you through to get the big picture, then the workshops will be worth it. The workshops add videos, stories about clients, lots of hands-on examples they aren't going to put on a webinar. Guaranteed, they aren't putting those stories out there like that. But can you, just for your one family, figure out enough with the webinars and the books, probably. If you won't get that done, then go to the workshops.

I always feel bad about the money till I get in there and realize how much I'm learning. For me, all the sessions I've done have made me more confident about working with ds and being decisive about what ways therapies should go. I recognize when I'm getting good intervention from a therapist and when I'm not. I'm able to carry it across the day more confidently, because I've gotten over my own learning curve. 

I can also tell you that the sessions are likely to sell out as they get closer. That means you're probably going to want to decide sooner rather than later, because they will almost assuredly sell out. If you have the money, you'll learn a lot. I would do all the days if possible. If that's not possible, let's just see. Compare the content of the days to the content of the webinars. If you tell us the topics for the days, I'll look at the webinars and give you a two cents or half a cent, lol.

[PeterPan]

Also, there are people who show up for the ST seminars that you wouldn't expect, like bigwigs. Sometimes people just like to see things a new way, even when they think they know stuff. Sometimes schools will send their entire team for a particular day. Sometimes a school will send one person, get them trained on everything, and then that one person goes back and is the resource for the rest of the team. 

I think the more removed your instruction, the less skillful and confident you'll feel. And it really depends how much customization and application your kids will need to get it to click. Are you good at learning from materials? Once you get the concepts, you'll see so many ways to carry them over to other areas (literature, math, Bible, etc.). I've known people who got that 2nd hand training and they just GOT it and could be super creative in how they applied it. Just varies.

[PeterPan]

Ok, if this is the Denver list, they have 4 days. I've heard Nancy Clements, and although she's a bit of a snooze (or I was just tired), the content was good. MGW and Pamela Crooke just happen to be exceptional speakers and you get spoiled. But NC is fine, yes. You really, really cannot go wrong being in the room with her and listening to her. So then what I would be considering is doing days 3 *and* 4. 

So now I'm looking at the webinars. These are not free but paid

https://www.socialthinking.com/eLearning/categories/ImplementingSocialThinkingMethodology  This is the equivalent of day 3. Family rate is $106.71. That's no getting to ask questions, no networking wth other professionals and hearing their stories, no free lunch, and no discounts on materials. Also you don't get to *see* all the materials, because remember they literally bring most of what they sell, all the best stuff, to the workshops, meaning you can see stuff and save mistakes (or buy more, haha). And that's dependent on you kicking your butt and getting it done. But it's on your timetable, no babysitter, and it's cheap. And it's MGW (adore) and it's basically the same content. At least that's how it looks to me. Compare the goals and see, but it looks the same.

 

https://www.socialthinking.com/eLearning/categories/SocialAcademicConnection This one is really foundational. It's going to follow their blue book on social thinking. Just really good, foundational stuff.

Ok, if you're going to pay, those are the ones I would do. I think they may just literally not have everything done yet. Like I'm guessing eventually they'll get the content of the other session days done. So I personally would say that if you did those two days online (and of course anything free) and then went to day 4, you'd have pretty much blown your mind. They do have some paid e-learning modules for the dynamic assessment, and it's pretty informative. It's not something that has gained a lot of traction in the IEP world (because it's not standardized), but there are standardized tools to sub in for components. Just the fact that you can wrap your brain around so many things so quickly is fascinating. But that's pretty in the weeds and in-depth and really for kids who have SERIOUS narrative language and perspective-taking deficits. Definitely not your starter course.

I've been to the EF sessions in person that parallel the content they're covering. It's fine. It's all fine. Sometimes hearing things again a different way is useful. But if you want to change your world, try those two modules. 

Also, I'll just say this, but I REALLY like We Thinkers 1 and 2. I like it BETTER than Social Detective and Super Flex. We Thinkers is STELLAR, and if you were just rolling in money, hitting days 1 and 2 would probably blow your mind and radically alter how you work with your kids. I don't really know what's going on with them, but they cover foundational concepts there that get fleshed out in all the other programs. The We Thinkers materials would fit two of your three kids probably, and understanding that material would make you more flexible in how you work with them. 

I think value really depends on how much you need this. I've paid $100 an hour in cash for my kid to work with someone to do this stuff. For me to drop $$$ is still less than attending sessions. If you miss the opportunity and then realize you're not getting it done on your own, then you'll end up paying. And I get money is real too. 

I doubt most people are going for all 4 days. Maybe they are, but I can tell you it's really fatiguing to go that long. So you'll probably see teams from schools coming in and doing 2 days or 2 days, not all 4. Because you have to hit all the stages, doing all 4 would help you. Will they make e-learning modules for the content of the other days? I don't know. They've cranked all ths out in the last year or something, so they're clearly working on it. Or you could just buy the materials and hope for the best. 

I can go look at the free webinars, but they're probably teasers, foundational concepts. When they say they're helping you implement xzy with fidelity, they really mean it. When you walk out of there, you'll have wrapped your brain around that one curriculum and the why and have seen videos of them implementing it and heard stories till the terms mean something and have pictures and videos attached in your mind. So people will come, attend, buy the materials, and go directly back to their school and begin implementing, boom. They'll go back to their school and train the entire department, boom. That's what those courses are. 

So I'll go look at the free stuff, but it's more just what you need.

[PeterPan]

Where some of the elearning course are shorter, it's because that was like 1/2 day of a conference. So like maybe in the morning they talked one thing and the afternoon another, hence 2 modules and 2 modules instead of 4 modules. But the elearning is corresponding to talks they've been doing at the conferences, yes, and it's GOOD STUFF. If price is the biggest issue, I would start there. It's convenient and your cheapest route. 

[PeterPan]

Yeah, since you have some time, I would try the online modules, see if they're a good learning modality for you, and then decide. I think as long as you register 4-6 weeks before the conference you'll get in. I'm pretty sure I've seen them sell out around 1 month before, so I wouldn't wait closer than that. But you could do online modules now, spreading the cost out a bit at a time, and you'll have a better sense what you want next.

Some of their e-modules on just the foundations of social thinking would be really good. Sometimes zooming ahead to the fruit is not as helpful as watering the root. 

[exercise_guru]

I so want to go . I have a teenage daughter that really needs to benefit from social thinking. There is not a counselor here that deals with it and she is so intelligent but socially ackward. I  want to buy some of the materials but she learns best from videos and being in a seminar would really help her. She isn't autistic but just a genus with some very difficult time relating to her peers and social situations. I saw on one of the webinars that when they implement social thinking in the classroom 70 percent of the kids get it right away and the rest need more time and help with it. My daughter would get it right away but it just isn't available to her. 

 

I wish every teacher and every counselor would use their materials. I have given several pamplets and email links to my daughter's counselor. one can always hope. 

For myself I appreciate the webinar recommendations because the social thinking isn't in my area . I would travel but it would have to be in like SLC utah or somewhere I could make work with our airport. I would rather watch it at home without traveling. 

[PeterPan]

EG, you might show your dd the article on the Social Communication Profiles on the ST site. In fact, they train on those in the (paid) webinar on the dynamic assessment. Very interesting stuff, but the article will get her started for free.

[BooksandBoys]

Thank you all so much for your thoughts. I’m sorry I posted and disappeared. We’re caught up in a crisis period with my middle guy so I’m in not-even-survival-mode right now. It’s try-not-to-die mode. 🙂 

I’ll try to answer some questions. Yes, the Denver conference. I’m looking at day 3, which appears to be the Social Detective curriculum. While I’m sure all four days would be helpful, I have to be reasonable about cost. However, I’m noting what you said, Peter Pan, about the We Thinkers curriculum vs the Social Detective. Hmm. My boys are 10 (ASD1, gifted, ADHD, motor delay), 7 (ASD1, ADHD, severe anxiety, transient depression), and 5 (no diagnoses. We don’t suspect ASD, but something is going on (depression?) because he’s acting out like crazy this year and steadily worsening. We’ll be getting an eval for him soon). Yes, I need to update my signature. I wonder if it would be better to go to the younger sessions instead of Day 3? I was eyeing Day 3 because I’m seeing this curriculum as something to use with my oldest. He’s socially challenged but extroverted and the older he gets, the more frustrated he becomes. He is making good strides socially with his ABA therapist. Ugh. My middle guy is nowhere near ready for social thinking. He’s still trying to learn not to dart into traffic or run away when overwhelmed (I’ve ordered the Interospection books for my work with him). So, I guess I need a better idea about We Thinkers vs. Social Detective for a 10 years old quirky 2E. 

As to the enchilada question. My kids are whole enchilada kids. Middle even more so than oldest, but oldest needs enough support to call him an enchilada kid. He’s not going to go through the curriculum once and get it. It’s just a piece of a very complicated puzzle. Thankfully, he’s a hard worker, dedicated, but yeah, he has a lot of deficits. If I just had him, I’d have a full time job. But I have two more, and one of them is at least three times as complex as my oldest. So, I’m crazy  🙂  

I am a person who used to learn really well from print (and I still think I’m that person), but I’ve found that when it’s related to the issues my kiddos deal with, I’m so better in person. I get paralyzed by books, and I avoid the online modalities (paralysis coupled with just not liking that type of learning). I think it’s because I feel chronically defeated, so I look at a new curriculum and just fold. I think I’ll do well to be in the setting of group learning. I like to ask questions, and I might even meet some good, local people. I’m actually talking with our sons’ ABA supervisor about attending as well. So, I think I’ll do well in person, really learn, but, yeah, I’m afraid of wasting the money. I do live here, so, I’ll have no hotel costs.

[BooksandBoys]

On 11/28/2018 at 6:05 PM, PeterPan said:

Yeah, since you have some time, I would try the online modules, see if they're a good learning modality for you, and then decide. I think as long as you register 4-6 weeks before the conference you'll get in. I'm pretty sure I've seen them sell out around 1 month before, so I wouldn't wait closer than that. But you could do online modules now, spreading the cost out a bit at a time, and you'll have a better sense what you want next.

Some of their e-modules on just the foundations of social thinking would be really good. Sometimes zooming ahead to the fruit is not as helpful as watering the root. 

Could you clarify: when you say e-modules, do you mean the paid ones you found? Or the free ones? 

[PeterPan]

 

2 hours ago, BooksandBoys said:

 I think I’ll do well to be in the setting of group learning. I like to ask questions, and I might even meet some good, local people. I’m actually talking with our sons’ ABA supervisor about attending as well. So, I think I’ll do well in person, really learn, but, yeah, I’m afraid of wasting the money. I do live here, so, I’ll have no hotel costs.

Oh I don't think it says anything negative about you! You're busy and it's easy to get pulled away if you don't have a dedicated time to do it. Going to a conference and getting away totally makes sense!

I think you should go with your gut. I've always learned stuff going to the ST workshops, so I don't think you'll be disappointed. You'll get a discount on materials. So you have someone doing ABA? And what are they doing with him? Are they BCBA or a behaviorist or? Sometimes people haven't gone but they're already in the loop. 

Is your darter on meds for the ADHD? And are you getting in-home ABA? What's the ABA person doing? Are they wanting you to do Social Thinking materials or are they wanting to do that work themselves?

To be clear, the concepts in We Thinkers and Social Detective are basically the same. The maturity level differs, and Social Detective will put them more on the spot to think. Yes, SD would be more appropriate for an older dc. However if he were the "helper" while you did We Thinkers with the youngers, he would learn a ton. We Thinkers is play-based and naturalistic, with story books and lots of activities. It's very disarming and not going to increase anyone's stress or result in fatigue or resistant behaviors. 

2 hours ago, BooksandBoys said:

Could you clarify: when you say e-modules, do you mean the paid ones you found? Or the free ones?

The free content is introductory and the paid content parallels the workshops, bringing the workshop content to audiences who couldn't make it to workshops. The workshops fill up, so not everyone who wants to attend can attend. It allows schools to train their staff, a whole department, rather than just sending one representative. 

[exercise_guru]

Learning in person would absolutely be best and if they have a conference in SLC I am going. Anywhere I have family or friends so I don't have to fly and I have a place to stay I would go. 

PP thank you so much for your review on the seminar. 

Not to hijack the thread but I guess I am. Its so on topic because as parents we need this information for my kiddos. 

I am sad that I have not been participating in the online webinars. Especially the ones that are free. I have been taking some time to "Take care of myself" I signed up for personal training, Cancer counseling, a customized dietician and Acupuncture. These things have taken my time and been a personal investment to myself. Badly needed but have taken the time allocation I have for personal therapy for my kiddos. 

I have emailed the creators of social thinking begging them to consider doing a small groups weekend where they teach the parents and then have little mini sessions with the kiddos. I also may need to pay someone out of pocket who understands these strategies and can counsel my daughter. She learns hands-on and she learns talking to someone . 

I wish they even had a video series that went with the books or online learning course that I can work with my daughter. She goes to a gifted math school and is very bright but absolutely socially a mess. She has been ostracized and bullied because she does not understand social cues and how to have relationships. It is only after 2 years of counseling with a counselor that understands gifted kiddos that she has been able to allow us to parent her. You know that Que you give with your voice " I have had just about enough" " its time for you to accept and take no for an answer"? Well her brother can recognize it and knows to practice the better part of valor and self-regulate. My daughter doesn't recognize that at all it has taken years to get her to even pick up on that.  Girls her age like her atfirst but after a short time find her annoying and freezer her our. I had a full evaluation done with her with 2 different specialists. No diagnosis. No Autism , no Aspergers  too low on the spectrum to qualify for a diagnosis. We also did a full testing with a very skilled psychologist and have not found anything that helps. She has social anxiety so we have her on the lowest dose of zoloft. She makes eye contact and always has. She just gets impatient and her mind is moving the whole time she is with others. She has no idea how to be present in a conversation.  I am significantly working on her diet to help her with the health side of things. She is the one that we have sleep with the dog and now a cat. The dog lays on the floor, the cat lays on her bed and this has helped significantly. Also I have tried to find a social thinking specialist in our area and had not luck. 

If anyone has ideas of a path I can take to invest to help her especially a social thinking path that would be great. 

Edited December 3, 2018 by exercise_guru

[PeterPan]

11 hours ago, exercise_guru said:

We also did a full testing with a very skilled psychologist

That's right, because there's a test for spectrum and they draw blood and they know, conclusively, like on Good Doctor. Snort. I'm not sure what mood I'm in. They just ended the Good Doctor season with a CLIFFHANGER and aren't gonna have another episode till January! I'm dying, lol. I'll survive.

No seriously, dig in enough on how this stuff is done and you'll get really cynical. You can actually get genetics run, if you have $$$$$ to blow. If you have anyone diagnosed, you might be able to go through SPARK. I think siblings can go through SPARK. I don't remember actually. It was definitely parents. 

https://www.socialthinking.com/Articles?name=Social Thinking Social Communication Profile  Give her this article and let her work through it herself. 

11 hours ago, exercise_guru said:

consider doing a small groups weekend where they teach the parents and then have little mini sessions with the kiddos. I also may need to pay someone out of pocket who understands these strategies and can counsel my daughter. She learns hands-on and she learns talking to someone . 

That's not going to be very efficient for them. They have to train people who then go back and train a whole school, a whole district. Literally. Like they run workshops and fill a room with 300 people, boom. Sometimes it will be a whole team from a school, but often it's one person who then goes back to change things at their school and trickle it down. And that's what they have to do.

Social Thinking interventions should be readily available, and for a teen they certainly aren't the end or best or limit. It's important to point out (again, ad nauseum) that while Social Thinking materials are EXCELLENT and developed based on a lot of sound EBP (evidence-based practices), they aren't themselves technically evidence-based practices. In other words, it's not accurate or evidence-based to think you can put a person on the spectrum through them and BOOM the world changes. Now if you do that with some kids, some ADHD kids, yes one time through and some meds and wow the world opens up, they pick up the clue phone. But not spectrum.

Most practitioners are going to be using a broad variety of things. They're going to bring in lots of tools, books, their own experiences. And think about the different things a practitioner brings to the table. Like if you get someone who is an SLP, they're branching into this area they weren't trained in. It's fine and necessary, but they're learning as they go. You move over to a psych, maybe they have a CBT background, which may or may not apply. You move over to a behaviorist or BCBA, and that starts to get interesting. There you have someone who has more experience with autism, who's thinking about the person as a whole and how their behavior is functioning in the whole of their life. So it's not just what materials they're using but this whole set of experiences they're bringing. 

11 hours ago, exercise_guru said:

She has no idea how to be present in a conversation. 

The more you describe what's going on, the more diagnosable she sounds. It sounds like the psych you used had some preconceived ideas and not much experience with girl autism. If it's affecting her life, it deserves intervention.

It's hard to find a behaviorist, someone who specializes in autism, who has experience with girls, teens, gifted kids. They're more going to be experienced in young kids, because that's where the intervention is heaviest. You might look around though and just say ok, something kissing the spectrum, let's find someone who actually specializes in autism and work with them.

Sometimes, as you move along the spectrum, the things from say an ASD3 presentation *are present* in the 1/2, but they're maybe so subtle or variable (here, not there, some times, not others) that you miss it or blow it off. So if you get someone who's used to ASD2/3 or hang around it yourself a bit, sometimes then you can back up and recognize stuff. Like my ds had this thing he did with his fingers, a type of flicking, and I thought it was idiosyncratic, just him. Well I thought that until a kid with ASD3 came and did it RIGHT UP IN MY FACE, and then I was like OH that's why ds does that! LOL So if your dd were to go to an autism support group, she might meet some other young people or adults with autism and find things about herself. She probably has the data inside that was necessary to clarify the diagnosis and she couldn't give it because she had no frame of reference. If she's masking, she's not letting it show. Girls are famous maskers. So she has to find it for herself, and hanging with others might help her get there. Hanging with more NT people has shown her differences too, which is really important.

I don't know if this is her case, but for me, it was only recently that I ever met an *adult* on the spectrum. Seriously. Like you might meet kids, and I had just from 8 years at our speech therapy place. But has your dd actually met any adults on the spectrum? 

There's a lot of range, and there's this shadow area where they'll say the person is but maybe would have gone undiagnosed. And then is it the diagnosis or the intervention that would make the most difference? It's not like a binary thing, yes/no, on/off. It's fringe, how many genes you glitched, how much it's affecting your life, how you want to identify, what makes your world make sense for you... Or, I can tell you that once she's 18 the psychs will ask what difference it would make. Sometimes it doesn't make a difference and that yes/no analysis wouldn't make as much difference as maybe some more tools.

I would look for a behaviorist or BCBA who specializes in teens/young adults. And maybe don't assume all eggs in one basket. Like I think RDI is pretty slick, and a dab of that might give her some change without costing a ton. It's surprisingly brilliant and simple. Around here, it's hard to find but if you find it the intake eval is cheap and gives you a great plan to get you going for months. RDI focuses on non-verbals like joint attention. Think how much she's missing if she doesn't have basic joint attention. You can't medicate to make it happen, and the SLPs are too brash with their "look at me" and forced mess. RDI is very natural and you'd like it. And it really can be like 1-2 sessions, get the ball rolling, take over at home. It was epiphanal here.

Another thing to look into is Interoception. The curriculum is coming out. Again, Social Thinking (and Zones) go so end fruit, and Interoception is saying if you don't understand YOURSELF, how are you going to understand anyone else? You can MEMORIZE a list of faces and emotions, but that's not really the same as understanding yourself and being ready to understand others. So again, so foundational and it's not going to be expensive to make happen. Therapy around here is $100-130 an hour, depending on who does it, and you can blow 10s of hours easily, easily, easily. I'm not sure what the IAC (interoception awareness curriculum) is going to retail for, but I doubt it's going to be gouging high. We'll see. And right now phase 1 can be completed in 8 weeks. It's due out early January hopefully. So you could literally change how aware she is of her body (and her readiness to move on to phase 2, noticing things in others) in 8 WEEKS!! That's astonishing.

I think there's a lot of room for counseling, working with a psych or BCBA, sure, absolutely. But there's a lot we can do to help ourselves. Social Thinking is not a miracle cure, only a piece. In fact, I would say it's a small piece. If you try to work on social thinking and you don't have joint attention, don't have self-awareness, and aren't noticing others, then what have you got? Highly trained robots, kids who can recite lists but have no clue how to apply. And that's why they aren't doing studies, because it's more a concept, a piece of the pie, not the whole enchilada or a curative system.

It's going to take time for her to learn enough to get comfortable. It's going to be a journey. You can't give it to her, because it's her unique mix of needs and her unique process where she's going to start asking questions and seeking answers and learning.

[Crimson Wife]

On 11/28/2018 at 4:57 PM, PeterPan said:

 

Also, I'll just say this, but I REALLY like We Thinkers 1 and 2. I like it BETTER than Social Detective and Super Flex. We Thinkers is STELLAR, and if you were just rolling in money, hitting days 1 and 2 would probably blow your mind and radically alter how you work with your kids. I don't really know what's going on with them, but they cover foundational concepts there that get fleshed out in all the other programs. The We Thinkers materials would fit two of your three kids probably, and understanding that material would make you more flexible in how you work with them.

I can't compare We Thinkers to Super  Flex  or Social Detective  as I haven't seen the latter but We Thinkers is excellent. It's the program used by the best of the social skills groups my DD has done (unfortunately the clinic changed the day to one that didn't work for our schedule so we had to stop). Don't let the age range scare you off because even though the ST website says it's for 4-7, it's something that can be used throughout elementary if the child needs those foundational skills.

[Crimson Wife]

18 hours ago, PeterPan said:

 No seriously, dig in enough on how this stuff is done and you'll get really cynical. You can actually get genetics run, if you have $$$$$ to blow. If you have anyone diagnosed, you might be able to go through SPARK. I think siblings can go through SPARK. I don't remember actually. It was definitely parents.

SPARK will test siblings but it doesn't give results back to families. Its purpose is building a DNA database for researchers to access.

Now the Simons VIP study also does genetic testing of siblings and I'm not sure yet whether or not we will get  notification of the results. The coordinator told me that they'll have the results back from the lab in about 4 weeks, so if they do provide notification to families, I should know by the end of the month (we sent in the test kits shortly before Thanksgiving).

[BooksandBoys]

19 hours ago, Crimson Wife said:

I can't compare We Thinkers to Super  Flex  or Social Detective  as I haven't seen the latter but We Thinkers is excellent. It's the program used by the best of the social skills groups my DD has done (unfortunately the clinic changed the day to one that didn't work for our schedule so we had to stop). Don't let the age range scare you off because even though the ST website says it's for 4-7, it's something that can be used throughout elementary if the child needs those foundational skills.

Alright, I’m taking you all at your word on this. 🙂 As I said, I was only looking at SuperFlex because my middle guy isn’t even ready to touch social stuff, so I’m targeting social stuff at my oldest. But, he has significant deficits in really weird places (which I’m sure is very common). Like, how he can describe and demonstrate all the steps for safely crossing the street, but when he looks both ways, his eyes don’t actually track. They keep look straight ahead while he moves his head. That’s not a social example, just an example of how the deficits are in unexpected places. 

But, my youngest could use some We Thinkers too, so it sounds like it will be helpful for the whole family. 

[BooksandBoys]

On 12/2/2018 at 2:23 PM, PeterPan said:

 

Oh I don't think it says anything negative about you! You're busy and it's easy to get pulled away if you don't have a dedicated time to do it. Going to a conference and getting away totally makes sense!

I think you should go with your gut. I've always learned stuff going to the ST workshops, so I don't think you'll be disappointed. You'll get a discount on materials. So you have someone doing ABA? And what are they doing with him? Are they BCBA or a behaviorist or? Sometimes people haven't gone but they're already in the loop. 

Is your darter on meds for the ADHD? And are you getting in-home ABA? What's the ABA person doing? Are they wanting you to do Social Thinking materials or are they wanting to do that work themselves?

To be clear, the concepts in We Thinkers and Social Detective are basically the same. The maturity level differs, and Social Detective will put them more on the spot to think. Yes, SD would be more appropriate for an older dc. However if he were the "helper" while you did We Thinkers with the youngers, he would learn a ton. We Thinkers is play-based and naturalistic, with story books and lots of activities. It's very disarming and not going to increase anyone's stress or result in fatigue or resistant behaviors. 

The free content is introductory and the paid content parallels the workshops, bringing the workshop content to audiences who couldn't make it to workshops. The workshops fill up, so not everyone who wants to attend can attend. It allows schools to train their staff, a whole department, rather than just sending one representative. 

(All boys here) Both of my ADHD/ASD boys are on meds. Oldest on a traditional stimulant, extended release type. It’s a good fit for him, and we get about 7 workable hours every day with it. The rest of the day is just management. 🙂 Second son takes an alpha 2 agonist for his ADHD. It lessens the chronic movement and anxiety a bit, but doesn’t do much for the inattentiveness. Unfortunately, stimulants set of his anxiety in a scary way, so this is what we have for now. 

Both boys do in-home ABA with behaviorists. They are supervised monthly by an amazing BCBA who initially worked with my oldest until insurance refused to pay for her anymore. By the way, send me meds of my own because DS2’s therapist just abruptly left the agency and there is no one to fill in right now. He’s in his typical autumn through holidays crisis already and I was already nearing the end of my rope. This is not good. 😫

ABA works on social interaction with oldest (looking at face - not necessarily eyes, reciprocal questions, reducing questions - he would ask questions about his passions all day long, showing interest because you like someone, even if you think what they are saying is boring), flexibility of thought/activity, crossing the street safely, picking up toys quickly instead of in the stereotyped way he prefers. We’ve conquered a few major behavioral challenges already, so these are current areas of focus.  

With DS2, they work on responding to his name, responding to questions, telling someone why he is leaving the room, some safety concerns, asking for help instead of melting down, recovering from meltdowns, flexibility when transitioning. He has excellent language, but he often doesn’t use it  

I’ll be doing the Social Thinking stuff myself. I think the ABA people will be open to adding in bits, but I don’t know for certain.  

[Lecka]

My 10-year-old is doing We Thinkers with ABA.  It's just one thing they do with him.  I think it's great. 

Okay, here is my feedback..... I have been looking at Social Thinking since my son was probably 4 or 5.  He did We Thinkers 1 a couple of years ago.  There was good stuff in it for him, but he also kind-of maxed out in the 4th book.  "The Group Plan" was way over his head.  Way, way over his head.  We put it aside.  We moved and it turns out I left We Thinkers (but I got it when it was The Incredible Flexible You) with the ABA therapist.  Not a big deal, though.  I had purchased it, but she purchased a lot of things to use with my son and made a lot of materials for him.  

Anyway -- some time passed, that he was a little stalled out for whatever reason.  

Now he is in We Thinkers 2 and he is going well with it.  

He even said "my guess is...." about something in a book recently.  Now -- I know he had just done "smart guesses" in We Thinkers.  But I also know he is working on "making a prediction" in reading (it is a current IEP goal in reading).  So I don't know exactly where that "my guess is....." came from.  But it is good synergy when things overlap like that.  

But I have *frequently* wanted to use stuff from Social Thinking and it has been years too soon, or he's been able to do some and then there is a conceptual leap and it takes years.  

Of course time seems to pass in slow motion sometimes....

[Lecka]

Anyway -- I also like We Thinkers a lot for his age.  

As far as You Are a Social Detective, I have read it and feel like it explains Social Thinking to me.  I don't see it being something that would make much connection for my son.  The story books for We Thinkers do make a connection for him, though.  Except The Group Plan did not, but he just was not ready for it.  

He likes the storybooks and activities for We Thinkers 2 as well.  

Our old ABA loved the look of Social Thinking and Me when it came out, it had a lot of pictures she thought would be great to use to talk about various things.  But I have only seen samples, I have not seen a copy.  I think it looks good and I think my son would probably be able to do well with it, too.  But it's fine if it's later, since We Thinkers is going well for him.  

I have a sense like we will just always be doing some Social Thinking product with him in some low-key way.  

I love the We Thinkers 2 book that talks about play skills, too.  I am really "into" play skills and the companion book with We Thinkers 2 is one of the best things I have ever seen about play skills.  

[Lecka]

I also think We Thinkers is both fun and structured.  

I think a lot of things provide ideas but then it's hard to know "how on earth do you implement this with a child who doesn't just *do* these things?"  

I think it has good implementation ideas.  

I also think it has good implementation ideas at a variety of levels!  I think it has stuff for more basic levels and for more advanced.  It is surprisingly hard to find things that do this!  

That is all for the parts about play skills.  It really is one of the best things I have ever seen about play skills, and it is a major need here, as my son really needs to get along with his siblings!  They are older and it's not necessarily about pretend play with siblings, but he needs to have some give-and-take and some cooperation!  It helps when he can be a little less literal and willing to indulge in "what if blah blah" types of conversations.  My daughter loves to say "what if blah blah" even while we are riding in the car, and it is not directly a play skill, but I think it is the "play skills" kinds of things that do help with that kind of flexibility.  

We have a lot less of those "don't say that" fights in the car. 

But I also think -- it is hard to say that it's because "oh we went through this program and then boom we got this result."  A lot of things have to build up over time.  I think a program like Social Thinking is an important part of it, but it's just not something where it's like "okay we went through the story books and did the activities, now it's all clicking for him."  

It's still good but it is a slower process and on a different timeline than I would have thought when he was younger, and I have been so impatient and spent so long at very foundational levels.  

But still I have always heard a lot of kids make gains over time, and we are seeing that with my son, too. 

Edited December 5, 2018 by Lecka

[Lecka]

1 hour ago, BooksandBoys said:

He has excellent language, but he often doesn’t use it

 

I don't know if you have heard of functions of language, but it's a framework where you can have and use language for one purpose/function, but that doesn't mean it automatically transfers to another purpose/function.  It is part of Verbal Behavior.  

It's a really helpful idea, I think, for things like this, because it is about the idea that the child has the words, but not the uses.  

They can divide up language use into different situations, and see that kids can have strengths and weaknesses.  

But it takes away a lot of frustration from knowing kids can say and use words/language in certain contexts, but not in others!  

Asking a question and responding to another person's language (reciprocal questions) are both things that would be considered their own language function.  And it's a different language function from "telling about something."  So iow -- being able to "tell about something" doesn't automatically transfer into being able to ask a question or respond to another person's language, even if all the same words would be used.  

It's really one of those things I love.  It explains so much.  

[BooksandBoys]

7 hours ago, Lecka said:

 

I don't know if you have heard of functions of language, but it's a framework where you can have and use language for one purpose/function, but that doesn't mean it automatically transfers to another purpose/function.  It is part of Verbal Behavior.  

It's a really helpful idea, I think, for things like this, because it is about the idea that the child has the words, but not the uses.  

They can divide up language use into different situations, and see that kids can have strengths and weaknesses.  

But it takes away a lot of frustration from knowing kids can say and use words/language in certain contexts, but not in others!  

Asking a question and responding to another person's language (reciprocal questions) are both things that would be considered their own language function.  And it's a different language function from "telling about something."  So iow -- being able to "tell about something" doesn't automatically transfer into being able to ask a question or respond to another person's language, even if all the same words would be used.  

It's really one of those things I love.  It explains so much.  

I have heard about the functions of language, but if you have a book recommendation, I’d love to learn more. 

I’m very patient with it all because I can see that there’s a lack of “ability” not necessarily “willingness.” That’s why his goals are things like responding to his name and answering yes/no questions, saying “help me,” and learnjng to use an escape phrase (I’ll be right back), not “carry on a conversation.”

It’s always interesting to see him start talking about an interest (he’s late to develop them). His focused interests for the first six years of his life were 1) me and 2) the cat. Now, though, he’s very interested in Ramona books, Henry Higgins books, and Harry Potter books (DH and I read aloud and he has access to audiobooks). It’s fascinating to listen to him explain the plot of a book or wonder about how something could have gone differently. He can go on, eloquently, for some time. Ask him if he’d like to go swimming and suddenly he can’t find words. It’s fascinating. 

[Lecka]

https://www.amazon.com/Verbal-Behavior-Approach-Children-Disorders/dp/1843108526 

This is the book for functions of language!  For parents lol.  

[PeterPan]

Hi ladies, I got behind reading here but wanted to rejoin quickly/briefly. Maybe I can hit more tomorrow.

Thing one, on the ABA stuff, I've found that the quality of the person interacting with my son really matters at this point. I'm not sure what op said that made me think about that, but I wanted to toss it out there. Even a BCBA is not sainted and omniscient. They could be an unmarried, comparatively inexperienced person who happens to have a masters and an internship. Experience matters, including parenting experience and other kinds of experiences. Just having the letters doesn't mean they have all the answers to your problems. I look for quality of interaction and I take it from ANYBODY who's giving it. The more high quality interactions my ds has, the better. 

Two, the mis-step we made was assuming that language was there simply because we heard it. You're either learning language top down (whole to parts) or parts to whole, and if you whole to parts then you probably aren't brilliant enough to break it down to the smallest parts. That means you're scripting and using tons of memorized language, phrases, sentences, patterns, instead of being the most flexible. So it doesn't come out because it's not actually in there in a usable, rearrangeable fashion. So then you have to go back through and relearn language, parts to whole, organize the brain, and make the language usable. THEN you get out the language.

At least that's what we had to do. And the only test I found that really busted through the lunacy of modeling that most tests (especially the accursed CELF) use was the SPELT. Also the TNL. So even if you're hearing language, don't assume there aren't language problems. 

If you want to go in circles, get in the middle of the SLP vs. ABA war, my lands. 

I'll try to read more of what you wrote, but it kind of got in the weeds for me. I was trying to look for over-arching principles, like how do you know what you need next, what would be pivotal, what would make a difference. Providers vary, and I'm kind of post. If you want to do things yourself, do things yourself. My ds' issues were significant enough on some of these things, I've sort of given up trying to get help. I'm writing some phd people now and I'm pretty on-track with where the research is going. It's just there isn't some pat program for it yet.

Don't even get me on a rant about therapy. I want to spit. I was reading a list and the people were discussing treating a particular issue that is near and dear on us (apraxia) and LITERALLY they suggested to each other to go with a program because it's FREE. Not what is best, not what makes sense rationally (since right now NO treatment is evidence-based). Nope, just when push comes to shove line up three and pick the free one.

This is what we deal with as consumers. If we expect the unreasonable, we won't get it. We cannot expect masters level workers to be phd thinkers. We cannot expect custom service from therapists who are doing the same thing with all their clients that day. If you want custom, you may have to do it yourself or else find a therapist who IS willing to do custom work. If you want phd level instruction (which frankly anything ground-breaking or out of the norm is), you may have to do it yourself.

Be cynical, be jaded, and don't wait hoping someone else will solve the problems. Is that what I've learned? Mercy. I've gotten some good help and there are things a system could do better. But right now the system is not equipped to handle the most rare, odd, or extreme cases. 2E with crazy language disabilities and higher than norm expectations, that's not the norm. They're not used to making that happen.

11 hours ago, BooksandBoys said:

ABA works on social interaction with oldest (looking at face - not necessarily eyes, reciprocal questions, reducing questions - he would ask questions about his passions all day long, showing interest because you like someone, even if you think what they are saying is boring), flexibility of thought/activity, crossing the street safely, picking up toys quickly instead of in the stereotyped way he prefers. We’ve conquered a few major behavioral challenges already, so these are current areas of focus.  

Ok, I'll just say I thought this was odd. Like conversation, fine, that's good stuff, have at it. But the whole look at me gig is SO outdated. If I have an SLP say that, I fire them. To have a BCBA trying to do that is even more odd. It's not natural and not something you force. It also violates their own right to think and look away. It's much more natural to use an RDI approach and develop joint attention and social referencing. That's what the ABA people are SUPPOSED to be doing. They'll call it what they call it, but that's what they're supposed to be doing. 

So maybe if you're in a lull, pursue some RDI, or even just get the book. For me, getting the RDI eval with an actual person was pretty enlightening. It radically changed HOW I interact with ds and allowed me to make everything we do that much more potent for non-verbals. We were kicking but on verbal/language, but the non-verbals we were weak on. RDI is pretty much something you carry over at home as they give you tasks.

11 hours ago, BooksandBoys said:

With DS2, they work on responding to his name, responding to questions, telling someone why he is leaving the room, some safety concerns, asking for help instead of melting down, recovering from meltdowns, flexibility when transitioning. He has excellent language, but he often doesn’t use it  

Ok, this is what had made me think about the quality hours thing. It's just something to think about. He's going to need hours of service to help him come out of his aut. Right now he sounds really in the aut, and intense 1:1 would help him significantly. This is stuff where ds was, and it definitely responds to interaction, lots of 1:1 interaction. I know you can't clone yourself, so I'm sorry to sound unrealistic. I'm just saying if you've got that funding, think about what you can make happen. What if he were at home, doing his same work, but you cloned yourself by bringing in a worker. You run everyone parallel, but now you have two people, double the input, double the intensity of interaction. And you use very clear structures (lists, etc.) so either you or the worker can go back and forth. Around here a para can bill as low as $15-20 an hour. You can find them through Care.com even. 

11 hours ago, BooksandBoys said:

Unfortunately, stimulants set of his anxiety in a scary way, so this is what we have for now. 

The stimulant meds are a methyl donor. You could run genetics and see if he has any methylation defects to explain the reactions. If he does, then knowing that might help you with other things. For instance, orange juice is a pretty significant methyl donor, so you might notice patterns of behavior around consuming foods that are high in methyls, etc. They'll use phrases like under-methylator and over-methylator. It gets in the weeds, but it's worth looking into. My dc and I are all different on our methylation genes and how they pan out. My own I did NOT expect. It turns out I'm a mix, with some of the defects leading to over-methylation I expected but also MTHFR defects, go figure. It explained some patterns of how I felt that I couldn't figure out. You can do that testing inexpensively right now with the sales at 23andme.com

[PeterPan]

2 hours ago, BooksandBoys said:

It’s fascinating to listen to him explain the plot of a book or wonder about how something could have gone differently. He can go on, eloquently, for some time. Ask him if he’d like to go swimming and suddenly he can’t find words. It’s fascinating. 

So he's memorizing the audiobooks and using that language to make conversation, but once he has to retrieve words for a mental picture that he DIDN'T have the language preloaded for, he's toast. That's your language disability, and his giftedness and astonishing ability to memorize is masking it. Or run the SPELT and TNL and see. The SPELT has no models, unlike so many other language screening tests, so ds utterly flunked it when he did it this spring. 

2 hours ago, BooksandBoys said:

I’m very patient with it all because I can see that there’s a lack of “ability” not necessarily “willingness.” That’s why his goals are things like responding to his name and answering yes/no questions, saying “help me,” and learnjng to use an escape phrase (I’ll be right back), not “carry on a conversation.”

Well you're correct that they can't use what they don't have and that the language intervention needs to happen. Those goals are being given, not because other language wouldn't help, but because it's impossible to work safely with someone who's eloping, etc. They have to start with the basics that allow them to work with him. Are YOU working on those goals? You should be. If he's only getting work on them 1 hour a week or something, he's not going to make much progress.

But no, language is not something you have to wait around on like it's sequential (first we learn to comply, then we build language). Language is a never-ending pit of work that can be done. Those self-advocacy goals are going to be there forever, a long time. They'll mature (what he's asking for, how independent he has to be, etc.), but they'll continue to be issues. 

 

[BooksandBoys]

Quick answers because I have to run. 

Thanks, Lecka, I’ll grab that book.?

Yes, I’m working on all of these goals with them. I set most of the goals, not my ABA people. We are a family later to get diagnosed, oldest was 7, middle was 6, but I’ve been working, focused work, since the beginning because the challenges were there even if we didn’t have the name, the diagnosis.

ABA is new for us, only began, what? 3 months ago for DS2, 6 months for DS1 (moving cross country twice plus waiting lists don’t mix), so this definitely isn’t a “do what the professionals say” situation. They are just part of my team. The BCBA we worked with at first was stellar. Older, raised her own kids, listened to me, stellar.  Insurance stopped covering her, except as a supervisor. So, I still have access to her, but she doesn’t work one-on-one with my kids anymore. The therapist that just quit? I’m not happy about the timing of her quitting (this is a very bad time of year for DS2), but I’m happy to see her go. She’s a young person with, what appears to be, minimal experience with kids due to her inappropriate commentary about how when she is a parent, she’ll never allow xyz. 😂😂 She almost has her master’s, but she could use some real lessons. 

 DS1’s current therapist means well, but my frustration there is mounting too. She’s also young and inexperienced. We’ll see where we go as time goes on. 

I’d bet my house that our family is full of methylization issues. It’s on my radar to investigate that (my health improved radically with methyl B’s and 5hTP supplementation). My youngest has some significant behavioral issues too along with obvious giftedness, so there’s that. We don’t suspect diagnosis of spectrum for him, but he’ll kiss it, I’d guess. I’m working on getting a full eval for him. It’ll be a while before we are through the waiting list. 

I do not have the funds for a para. I’m barely holding it together financially with what we do. Thankfully, DS2 gets 4 hours (2 sessions) of in-home ABA a week and it only costs me their mileage after deductible. Yes, DS2 needs constabt 1:1. He’s gets lost in his movement (flopping about around the furniture for hours on end) if left to his own devices. DS1 has 1, 2 hour session a week. They both need eight thousand other things (DS2- speech, all the physical activities but he’d need a para to help him, mental health therapy, OT) (DS1 - PT, more extracurricular than I can afford, more PT, OT, social skills group). It’s a never-ending process to get it all set up and juggle the bills. 😀 As you all know. 

I feel like I’ve seen RDI stuff before, but I can’t remember. What book? 

[Lecka]

My son is in his 6th year of ABA.  At this point nothing about it is particularly specific to ABA.  They have a lot of latitude in choosing goals and programs, as long as they can take data.  

For us, my husband’s insurance is set up in a way that encourages ABA.  

The book I recommended, I think is a good book about ABA.  If you are doing ABA and maybe don’t know all the ins and outs yet (not that I even know *all* the ins and outs, but I know a lot more compared to when he was starting out), I think it is a good book.  They do use a lot of terminomology and I think it is helpful to know about some basics even if — it sounds like some of the book won’t be pertinent.  It’s hard to say though.  

If your therapist happens to be using VB-MAPP, this book is VERY helpful.  If not, it won’t be as helpful.  There is a lot of terminology that goes along with the VB-MAPP, but not everyone uses it and not everyone uses it with every client (as it is not appropriate for everyone).  But if you are using it, this book is great.  If not, some of it is not as pertinent.  

You might be able to get it from the library.  

[BooksandBoys]

I’m going to derail my own thread and talk about the comment Peter Pan made about oranges and methyl donors.

We’ve been struggling so much with my youngest’s behavior for going on 2 years now. He’s often delightful, likely very gifted. I do not suspect spectrum because I don’t see any warning signs beyond inflexibility and meltdowns, but we’ll see (testing pending reaching top of wait lists). But he gets into funks that go on for weeks where he is the angriest little guy I’ve ever met (and I’ve met a few, including another of mine). No cooperation. Saying things I don’t even know how he knows to say. Tantrums and meltdowns. He’s at the local school for K and they are at their wits’ end with him after the last almost 2 months. 

You mentioned orange juice, which reminded me that I’ve suspected that my DS2 has issues with oranges for years but I’ve never been able to nail it down enough to convince myself. At this point, DS2 doesn’t like them anymore, so it’s been a non issue (he has a long list of food issues including such weird ones as green beans and peas, along with the more common ones). 

But, youngest ADORES citrus. Lives on the stuff. Was eating 2-4 clementines a day. You said “orange juice,” and all my alarm bells went off. I got rid of the box of clementines. Within two days, he was better. Three days, he was a new kid. He hasn’t had a meltdown in 5 days. Since the end of October (when clementine season started again), he’s has meltdowns almost daily, usually more than one. This week? No calls from the school. It’s downright miraculous. (For the record, I subbed the clementine consumption with apples so that it wouldn’t just be a reduced sugar consumption thing - this is not my first food elimination experiment). 

My husband noticed. 

DH is hard to convince about the food things. He noticed. Told me to never bring citrus back into the house (before then reminding me that we WILL have to test this - after a couple of months of peace 😂). 

Our whole family feels like it can breathe again. 

So, what are the other methyl-donor foods? Beans, right? (Pinto, kidney, black. Things we almost never eat because DS2 can’t and I don’t feel well on them either).  If it’s a methyl issue, I need to educate myself on the foods to watch for reactions (he’s already gluten and dairy free). 

[PeterPan]

Well first, I'm glad it worked! Are you open to doing genetic testing? I ran the cheapest 23andme.com, downloaded the raw data, and ran it through knowyourgenetics.com You can find the actual genes and target them better. I've done it for both my kids and a friend. I got my own data through another test (through a university), and I was *surprised* at my profile. I had assumed I had the COMT, VDR, and TPH2 defects (yes), all of which result in higher methyl levels. What I was NOT expecting was that I'm a mix, with some MTHFR issues as well. 

So when you say he goes in a funk, could be lots of things, sure. Spinach drives down methyl levels (honestly I forget why, I'm kinda tired today). I think I had a scenario where some days I was getting lots of methyl donors and some days I was driving those levels down, down, down ever for a person with over-methyl tendencies. So my advice is RUN GENETICS. Don't guess, do the genetics. 

Then, when you have the genetics, I think you'll be able to stabilize him better with targeted supplementation. For instance, if you have the VDR defect, you take vitamin D. It's literally that simple. And when I asked my regular, boring, not anything unusual or alternative GP about vitamin D, he's like oh yeah it's a mood stabilizer! So they KNOW this and they have these separate bits of info, but does your ped ever say hey let's do genetics and consider D supplementation to stabilize his moods? Nope.

So the problem is not that he doesn't needs oranges. He needs to be able to eat oranges!! What he needs is the missing pieces in the process of USING the methyls, so his body can actually USE the nutrition from the oranges. It's not an allergy or something to avoid. Methyls are terribly important in things like converting B vitamins to active form, etc. If you drop his methyls too much, he'll actually feel like crap. So I would expand your toolkit to include the missing things so his body can use the methyls and be more stable. 

My tools for stabilizing methyls?

-niacin-this is very fast-acting, with a very short half-life. As geodob has pointed out, the non-flushing kind is extremely hard on your liver. I do NOT use that. I use the regular flushing kind, including on my ds. My polite suggestion would be run the genetics on yourself and dh (and your other dc) while you're at it to figure out who the genes came from. That way that parent can take the vitamins as well and realize how it feels and be more in-tune dosing the dc. There's a lot of fine-tuning here, and your dc is at an age where he can't self-advocate. Because he can't tell you how he feels, the parent will have to guess. So my advice is determine which parent has the defect as well, have THEM take it, and have THEM realize when the dose is just right and when it's not. 

This is the niacin I give my ds. Kal 25 Mg Niacin Tablets, Strawberry, 200 Count  It's a 25mg chewable tablet and it tastes ok. Amazon.com: Phillips' Fiber Good Gummies Plus Energy Support ...https://www.amazon.com/Phillips-Gummies-Support-Supplement-80.../B00R42HQQI  We also used these. Check, but I think they have 10mg of niacin per gummy. You can even cut a gummy in half. Or cut one of those chewables and you'll be about there. 

The trick with niacin is to start low and work up and distract them as they begin flushing so they don't get scared. I've never explained the flushing to my ds, because I didn't want him to refuse to take the supplements. Refusal is not an option, because in his case he would have to go on prescription medication. We use washcloths, distract, whatever. He's pretty chilled about it now. He also kinda misses cause/effect on things, so he doesn't seem to have figured it out. And the flushing won't happen EVERY time. At my ds' normal doses of things, he does NOT usually flush. It's just on occasion now. But it can happen and if you haven't taken it yourself you might be surprised. Also, if it's happening ALL the time or is extremely intense or uncomfortable, you may have the dose too high. My ds weighs 75 pounds and takes 2 of those chewables a day. If he gets into something that is a methyl donor, we might give him an extra one. If something is going wrong, I might give him two together. Usually I do one at lunch, one at dinner. But I want to emphasize that we started much lower than that and worked up and that he weighs more than your ds and has significant, significant challenges. 

-vitamin D-this is snazzy because it kicks in quickly and has a pretty good life in the system, making for a more stable effect. We pair it with K2 for better absorption. Your gut is supposed to make K2 and some people benefit from taking it. Vitamin D is indicated if there are VDR (vitamin d receptor gene) defects. Labs are fine if you can get the kid to sit for them, but D is usually pretty safe to take. We ran mine after I had self-dosed to a level where I felt pretty comfortable. I was right at the top but within the normal range. In threads here on the board people with D issues have said they feel best at that top end or even slightly over the normal range. Again, this is where it helps if the parent actually takes it themselves and finds the subtle symptoms there. If I take too much, I don't like how I feel. If I take too little, I'm not as stable. So it's really kind of a Goldilocks, sweet spot thing. And when my ds destabilized 3 weeks ago, we were like WHAT HAPPENED! We bumped his D, realizing fall was upon us and he had been indoors more, and boom back to being easy-going. 

Amazon.com: Vitafusion Vitamin D3 Gummy Vitamins, 150 ct: Health ...https://www.amazon.com/Vitafusion-Vitamin-Gummy-Vitamins-150/.../B004XLRTU...  these are the gummies. They're very soft, unlike the energy support gummies which are hard to chew. These D gummies do *not* work as well as taking a good, oil-based D, but they're a good starting point for figuring out whether it ballparks and one of your few options if he can't yet swallow pills. My ds only recently started swallowing pills (like in the last 4 months), so we were always having to look for alternative ways to get stuff in. Now that he can take pills, I use gel caps, which seem to work exceptionally well. I *think* I've seen an oil-based drops, but I don't know how that would taste.

In our experience, the half-life of niacin was really short (45-90 minutes) and the D would stay around maybe half a day. 

-5HTP- Indicated if there's a TPH2 defect. This was the GOLDEN TICKET for us. Amazon.com: Natrol 5-HTP Time Release Tablets, 200mg, 30 Count ...https://www.amazon.com/Natrol-5-HTP-Release-Tablets-200mg/dp/B001HCHGPC  This is gonna get you 12 hours of stability!! They sell a 50mg that is not time-release. If you cut them, it won't be time-release anymore, obvious. 

Was that all greek? I'm saying I use layers of things to control his methyl levels and keep him stable all day. I definitely don't think you want your ds eating a crazy amount of clementines, but you'd like him to be able to have *some*. You also don't know what else he's feeling that he's masking. So if you run the genetics, get him stabilized, then maybe you can reintroduce those foods and have some balance. Methyls are EVERYWHERE. It's not like you're just gonna cut them out. That would mean no chocolate chip cookies, nothing. That's not necessary. What is necessary is to fill the gaps making it so he couldn't USE the methyls going into his system and then to have some emergency strategies for when he gets into a lot and needs to bring those methyl levels down FAST. So like when I travel (vacations, whatever), I take a bottle of chewable niacin with me. If ds gets into something, boom, I can just solve it. And actually, at least for me when my levels go that high I have headaches. So it's actually physically uncomfortable, something he can't tell you or doesn't realize doesn't have to be that way. 

The other thing you can do is get the new IAC coming out and do some interoception work with him. He's going to have to live with his body his whole life, and he needs to start noticing how his body feels and have the right words for it so that he can understand WHY he needs to take the supplements that stabilize him and recognize when he needs some help to get back to stable again. I DO NOT just let my ds take things, willy nilly. Like he can't say oh I feel this way and go take it. I do the dispensing. But he's going to have this body his whole life and will need it to transfer. 

I would hope once you get him stable (with supplements that control his methyl levels) you'll be able to say hey let's try this, let's baseline with a scan (IAC) and then let's take a niacin pre-emptively and eat *1/2* a clementine and see how that goes... Kwim? You'll work it out together like that. But the key will be stabilizing him, because you're not going to just avoid methyls. They're everywhere. He might like how he feels as he gets more stable too. 

[PeterPan]

Or let's put it another way. You're explaining this sort of like a food allergy, but it's not. There is not an "over-methylation" gene, the way there is for undermethylation. For undermethylation, there is MTHFR and it's a known gig, this gene, this thing goes low. With overmethylation, that's a misnomer. What's actually happening, and you'll see this as you read, is the things that are supposed to USE the methyls, like vitamin D and 5HTP, are glitched. Because those things are low, the methyls stay high. And the high methyls in turn cause the psychiatric symptoms, boom.

So we can make it worse by flooding the system with methyls, but the real thing to address is why those methyls are high in the first place. That's when you look at those genes like COMT, VDR, TPH2, etc.

So the niacin is bringing down methyls by brute force, just mopping them up. But the rest of those things (5HTP, vitamin D, etc.) are actually refilling the underlying steps in the processes that got broken, allowing the methyls to get used again. And you want the methyls to be used, because that's how you make melatonin and serotonin, Bs, etc. 

Edited December 14, 2018 by PeterPan

[Crimson Wife]

On 12/6/2018 at 10:54 AM, BooksandBoys said:

I feel like I’ve seen RDI stuff before, but I can’t remember. What book? 

Relationship Development Intervention and the author is Steven Gutstein.

[BooksandBoys]

PeterPan, thanks for the detailed methyl/vitamins/minerals explanation. None of it was Greek to me- I’ve been studying the methyl pathways off and on for the last year or so. I use all of that (niacin, 5HTP, D, plus many other things) on myself in varying amounts at various times of the year. For example, I’ve had chronic nightmares most of my life that resolved when I began taking 200mg of 5HTP every evening, and I’m also one of those who needs to keep my D at the top end of normal or higher to feel decent). My kids already take D, fish oil, and magnesium, but I’ll be looking into expanding that. Clearly, running genetics needs to move to the top of my to-do list 😊. 

[BooksandBoys]

On 12/14/2018 at 10:19 AM, PeterPan said:

Or let's put it another way. You're explaining this sort of like a food allergy, but it's not. There is not an "over-methylation" gene, the way there is for undermethylation. For undermethylation, there is MTHFR and it's a known gig, this gene, this thing goes low. With overmethylation, that's a misnomer. What's actually happening, and you'll see this as you read, is the things that are supposed to USE the methyls, like vitamin D and 5HTP, are glitched. Because those things are low, the methyls stay high. And the high methyls in turn cause the psychiatric symptoms, boom.

So we can make it worse by flooding the system with methyls, but the real thing to address is why those methyls are high in the first place. That's when you look at those genes like COMT, VDR, TPH2, etc.

So the niacin is bringing down methyls by brute force, just mopping them up. But the rest of those things (5HTP, vitamin D, etc.) are actually refilling the underlying steps in the processes that got broken, allowing the methyls to get used again. And you want the methyls to be used, because that's how you make melatonin and serotonin, Bs, etc. 

So, to clarify: we need methyls to make serotonin (and, by extension, melatonin) and Bs. So, if we are chronically dealing with over-methylation, that means something is broken in the process of making all of some of those things (serotonin, Bs, etc)? 

[PeterPan]

There's something with the COMT gene also that affects how the body tolerates methyls. Have you done the KnowYourGenetics methylation profile? It's free if you just upload your raw data from 23andme.