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I have a lot of ADHD kiddos, so I have spent a lot of time reading about the childhood experiences of ADHD adults. Some common themes seem to be being called lazy, being told they are not living up to their potential, feeling like a disappointment, etc.

 
I am obviously trying not to inflict that type of trauma on my kids, but I'm struggling, especially with my oldest who is turning 12 in a couple days.
 
I know as a person he is not lazy. He really, really struggles with ADHD (and is heavily medicated). OTOH, I don't think that just because he has ADHD that means he never chooses the lazy path. And while I know that his ADHD makes everything so difficult for him, I don't think it is healthy to continually lower expectations and exempt him from natural consequences when he falls short of what I truly believe are achievable assignments with ample structure and scaffolding.
 
He has taken to lying constantly about everything...even lies that intellectually he knows will be uncovered seconds later, ie "Did you finish your outline?" "Yes" "Great, let's look..." only to find that it is an entirely blank document.
 
He refuses to ask for help, prefering to "avoid" work even when he knows it is going to come back to bite him, ie. He stared into space for an hour without writing one word on that outline because he didn't know where to start on his Lantern English assignment. I was checking in every 10 minutes to see if he had any questions, and every time he said no and deceived me by having an old outline up on the screen to make it look like he was working!! Even knowing he was digging himself further and further in a hole. 
 
And, yes, I know "the answer" is to pay closer attention to him, but realistically he has three younger siblings, two with mental health issues, one of whom has MONDO mental health issues. I was checking in every 10 minutes...all he had to do was let me know he needed help. He specifically didn't do that because he didn't want to do the work. I think I provide way more support and scaffolding and individual attention than he could ever get in a public school even with an IEP.
 
He has no motivation to do anything: academics, arts, sports, hobbies, recreation. I guess that is not true - he always hovers on the edge of screen addiction, so that motivates him to lie, sneak and steal a lot. But even when he plays video games he is not motivated to better his scores or improve his skills. He is just blah about everything and coasts through life putting in as little effort as possible in every domain. It's not even like he does the minimum...he does far less than the minimum and then lies and cheats for as long as possible until he is caught and has to make up the work.
 
I desperately want to do right by him...and all his ADHD siblings coming up the ranks. I want to be supportive of who he is, how his brain works, his strengths and limitations, etc. But I don't want to stand back and let him walk all over me and find himself as a young adult with no skills, no interests, no coping methods, no self-confidence, no goals or plans. And, no, I obviously don't expect him to have all those things now...but I do wonder how I can make the most of the next 6-10 years...without inflicting trauma on him...or me...or holding him to too high of standards or too low of standards, or, or, or.
 
If you are an ADHD adult, how do you wish your parents had parented you? 
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Your kids are much more complicated than mine, so you can take my input with a grain of salt... but I think the key would imposing consequences for behavior that you KNOW he can avoid. That makes the difference between kids feeling like they are being punished for who they are and kids who feel like their parents are appropriately strict. 

I would guess a lot of his issues are the autism and not the ADHD, too, right? I'd also be much more worried about the fact that he's not interested in anything at all than about his specific behaviors. I don't know how you'd go about making sure he's actually interested in something, but that'd be a priority for me. And I have NO IDEA how I'd troubleshoot that, since my kids don't have this issue. 

I am not diagnosed with ADHD or anything, but it's certainly conceivable enough that I would be -- I was certainly the kid who would lose her homework and her shoes and her had and everything 😛 . Even now, I mostly manage to not lose things by keeping myself rigidly constrained by routines and by staying organized. But in terms of how I'd want to be parented... well, I'd want to be seen as a human being, which is probably not so different from how I think anyone else wants to be parented. That is, I'd want my parents to keep my accountable about the things that I have a choice about, and help me out with the ones that I don't. 

Does any of that help at all? It's all kind of disjointed musing, I'm afraid, because while I do have attention issues, I was also a kid with passions. So that's a very different situation. 

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I do not (to my knowledge) have ADHD; my 2E is a different flavor. It’s hard. Sometimes just background-noise hard; other times crumpled-on-the-shower-floor-sobbing hard. I coped & self-medicated in a variety of unfortunate ways over the years while those around me were largely oblivious. 

DS8 has ADHD & I share many of your concerns. We try not to speak to him negatively. Too often, we fail. We do our best to apologize. We all struggle, & we all try to remember that the others are doing their best. 

We’re adding ADHD-specific tasks to our homeschool days once we return from spring break. Workbooks & several activities / games to target specific behaviors (blurting, getting off-topic, becoming physical when angry). I don’t know what will help, honestly -  we just toss things at the various problems to see what sticks. 

Is your DS12 in therapy? He sounds depressed, which I understand is pretty common for ADHD tweens / teens. Perhaps family sessions where you could all work to improve together, or group sessions where he could meet other kids his age with ADHD. A successful older teen / young adult mentor would be amazing. Even standard individual therapy; someone outside of the situation for him to open up to. 

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My dh has adhd and he has always said that he wished his parents let him fail when he was in middle school or high school. They have always provided scaffolding and came to the rescued, by advocating with the school and teachers when he didn’t turn in an assignment or didn’t finish on time. He had to learn the consequences of not caring about finishing his work in college and it was a hard lesson. It took him 6 years to finish college after failing classes. 

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24 minutes ago, Shoes+Ships+SealingWax said:

Is your DS12 in therapy? He sounds depressed, which I understand is pretty common for ADHD tweens / teens. Perhaps family sessions where you could all work to improve together, or group sessions where he could meet other kids his age with ADHD. A successful older teen / young adult mentor would be amazing. Even standard individual therapy; someone outside of the situation for him to open up to. 

We are in a bit of a autistic/ADHD mental health desert. My 9 year old's psychiatrist, whom I adore, works for the largest mental health provider in the area with dozens of locations spread out though our entire quarter of the state. He has been very frank with me that he does not think there are any therapists in their system who are qualified/adept at working with autistic, ADHD, 2E children. And that definitely jives with my experiences. Between my oldest two kids, we have tried over a dozen therapists and psychologists who just didn't have a clue. My kiddos are strongly 2E and have been able to think circles around every therapist we have tried. They hate the sessions. I hate the practitioners. The whole thing has just been pointless.

I do currently have six emails out to different independent psychologists in the area who say they specialize in children with autism and ADHD...and after 3 weeks, I have gotten exactly zero responses of any kind. At this point I am a bit bitter.

So, for now, DS is taking a series of ADHD classes with a psychologist on Outschool and considering joining her weekly social group for ADHD kids.

I will say that I don't think DS is depressed...or at least no more depressed than he has been since birth. He has never been interested in anything. He has never had a goal or a hobby or anything he was willing to expend even an iota of energy toward. But, OTOH, he does enjoy things. I set up a hike with friends which he LOVED, but I offered to see if they could meet up again the following week and he said he would rather just stay home. He LOVES his sessions with his Spanish tutor, but would give them up in a heartbeat if he had to do any of the back-breaking prep work like wiping the table or opening the laptop. He LOVES sugar, but isn't willing to even spend the 15 minutes to make three ingredient peanut butter cookies. He LOVES graphic novels, but would prefer to do without rather than browse through the library's online catalog to put ones he wants on hold. So he passively enjoys a lot of things as long as other people do all the work to make them happen.

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As an undiagnosed but probably ADHD kid, I  really benefitted from teachers who were firm and clear and non-judgmental.

 

I had a lot of teachers who fussed at me about my potential. But I also had a few teachers who held me to simple,  verifiable standards  like showing up to class on time, paying attention, and turning in my assignments. They literally stood over me in class to see whether I was taking notes. Went outside to find me when I was skipping class. They made me feel like an ordinary person. I am still grateful.

I bet your son has passion for lots of things. It sounds like he has a lot of love and support behind him and he will be better than fine 🙂

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21 minutes ago, wendyroo said:

He has been very frank with me that he does not think there are any therapists in their system who are qualified/adept at working with autistic, ADHD, 2E children. And that definitely jives with my experiences.

Ugh, that is SO frustrating! I’m sorry 😔

21 minutes ago, wendyroo said:

I will say that I don't think DS is depressed...or at least no more depressed than he has been since birth.

He passively enjoys a lot of things as long as other people do all the work to make them happen.

I’m glad he doesn’t appear to be in distress. I know you’ve mentioned before that his attention span is pretty severely truncated; I imagine it must be difficult to get much out of things when you can’t ever really dig into them.  

Easy, passive enjoyment must be such a relief & the type of rewards that would encourage perseverance may seem impossibly elusive - if he’s even really aware of them. With his mind constantly flitting from one thing to the next, it may honestly not occur to (& therefore, potentially bother) him.

Does he ever hyperfocus? If so, what on? What would he do, left entirely to his own devices (without an electronic outlet available)?

Edited by Shoes+Ships+SealingWax
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Fwiw, I don't think you're exclusively dealing with the effects of the ADHD. He's also dealing with the subtle language issues that he probably has with his ASD2. It sounds like a lot of his world is *hard* in some way and video games are *easy* hence them being preferred.

30 minutes ago, wendyroo said:

He LOVES his sessions with his Spanish tutor, but would give them up in a heartbeat if he had to do any of the back-breaking prep work like wiping the table or opening the laptop. He LOVES sugar, but isn't willing to even spend the 15 minutes to make three ingredient peanut butter cookies. He LOVES graphic novels, but would prefer to do without rather than browse through the library's online catalog to put ones he wants on hold. So he passively enjoys a lot of things as long as other people do all the work to make them happen.

Ok, some of this doesn't make sense to me and some does. You've trained your kids on steps for independence for so many other things that I'm surprised you haven't trained the steps for independence for the online spanish sessions. It seems like a totally reasonable goal. For my ds it took work to get him able to do his tele sessions independently. Tonight, my ds saw I had made nachos for myself (a light dinner after a long day) and wanted some. I told him to go ahead and make them, and reality was he didn't know the steps. He CAN do it, but it would be easier to let me than to rifle through his brain and figure out the steps. So I did some faded prompts (what do you need, what goes on next) and he figured it out. So I think getting your ds to a point where he does his spanish sessions independently would be a great goal, an attainable goal.

Now the cookies, that makes sense to me as something where he'd need more structure at first. My ds can cook independently if the steps are written out as bullet points. This is something we work on and I have a printed life skills level cooking curriculum for him (Cooking to Learn). You could simply write/type out your recipe, put in a page protector, and boom he now has a growing notebook of things he can make independently. Don't forget to put the safety steps. We started my ds reheating soup tonight and came back to see he hadn't turned off the stove!

I think browsing through an online catalog is a pretty complex task. My dd, who had significantly less issues, was choosing her own books that way around 7th. It may just be a little early. Do they have a youtube style picture cover flow to make it easy or does he have to put in terms? 

30 minutes ago, wendyroo said:

He has never been interested in anything. He has never had a goal or a hobby or anything he was willing to expend even an iota of energy toward.

Initiation is always hard with autism. It's part of the neurology. I never really understood it till I saw the most extreme expression in an autism school, where they were giving physical prompts, touching the arm of a client to help him initiate playing the piano. He *could* play, but to initiate the movement they had touch his arm. He was probably in his early 20s, so it was a very severe presentation of a really basic concept, that initiation can be very hard in autism. Sometimes when you get over the initiation hurdle, it goes better. So then there's that question of what kind of faded prompt you can use to get initiation. Here's a document on it https://www.erinoakkids.ca/ErinoakKids/files/64/640519bf-6497-4f20-a341-7c36e334a731.pdf

5 hours ago, wendyroo said:

I don't want to stand back and let him walk all over me and find himself as a young adult with no skills, no interests, no coping methods, no self-confidence, no goals or plans. And, no, I obviously don't expect him to have all those things now...but I do wonder how I can make the most of the next 6-10 years...without inflicting trauma on him...or me...or holding him to too high of standards or too low of standards, or, or, or.

So work through this. If you initiate and organize and get him doing all these things he can, in theory, do due to his high intellect, will he be employable in them? I agree, COMPLETELY AGREE he should be doing stuff. But will it make a difference in his employability? What does employability REALLY LOOK LIKE for him? You see him being employed? Not employed?

My ds I guess is slightly older than yours, which I hadn't caught onto because your ds is whizbang smarter and always performing higher academically. However since they both have ASD2 labels I'll just toss out that only recently have we seen some blossoming with skills that makes my ds look like he could be more employable. Up until a few months ago, it was like this theory or assumption. Now he's actually ACTING like someone who could become employable. Now he'll need breaks, absolutely, but he's getting closer.

I'm not sure if that shift is because of some medication changes we made or because of maturation. He's visibly changing, looking taller and more mature, his voice deepening somewhat, etc. Things are starting to come together.

My ds will probably not be able to do work that significantly uses any of his IQ strengths, because it would come with a lot of STRESS and require significant initiation (an autism weakness). 

The way I see his working panning out more likely is something like a moderate range of hours (25 hours a week) in a field that has some variety and mental challenge of some kind (to appeal to his intellect and be interesting) that gives him some connection with people (as he's socially motivated) without being highly social. And it must be a LOW STRESS job. So a predictable format with some variety and a small amount of people exposure. 

And when I run that by his workers (behaviorist, psych, county disability services coor, etc.) that's pretty much what they think too. 

I put EVERYTHING in terms of transition, work, where this is going. I'm working on handwriting, SO HE CAN WORK. I'm working on him learning phone numbers SO HE CAN WORK. I even told my dh we need to build him a dresser that has pull out drawers so he can do his clothes independently. 

Or put another way, if you win on academics and he gets a phd in xyz but can't initiate, can't handle the stress, can't deal with people, whatever, will he be employable in it? Michelle Garcia Winner of Social Thinking says in her workshops that this is the single biggest pitfall she sees, that parents don't see where this is going and put tons of effort into goals that are intellectual possible (college, whatever) but aren't reality for the person as a WHOLE. So they push the kid and get him through college and then he begs to go work at TARGET, where he can have peace and predictable hours and low stress. Target could be the right work for a very high IQ person. 

So I don't know what your ds can accomplish, but I think his pushback is probably reflecting a lot of things. Nuts, he could just feel kinda zombie from his meds and not have the interoception to self advocate and say. You could work on interoception and see where it gets you. It's a number one thing for improving his ability to say how he feels and problem solve. It won't hurt to work on it and might help. There's a complete curriculum and you could do it with all of them and see what happens.

I'm sorry it's such a hot mess and so hard. I really don't know and it seems like you usually sort it out very well. I'm just saying how it is rolling with my ds. It *could* be that some of what you want to see, a piece, will be coming over the next year or so with a fuzz more maturation. And it could be you're going to need some fresh help with transition or fresh goals. I don't know. But I can say very definitely that 20+ is coming and that you want to think about what you'll be worried about then and lead into that. I choose to slight academics if necessary to get those skills that will help when he's 20, because the academics he could do will not help him at 20 and the skills will. If academics can be the foil to get the skills, all the better, but maybe that's too hard, dunno.

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6 hours ago, wendyroo said:

He has no motivation to do anything:

Even if he had motivation, he'd still have issues with initiation and organization. 

6 hours ago, wendyroo said:

He has taken to lying constantly about everything

I remember a time I got into a lying trap and it was a skill deficit. It wasn't so much an outright lie, but I was sorta half telling the truth, being evasive, and reality was I didn't have the skills, didn't know how to make it happen, didn't have the information. Two different occasions, both memorable because I was, ahem, in my 20s. 

So I guess to me if he's lying *constantly* I'd wonder why and how to back out of that. Has everything gotten too hard? It seems like he requires SO much scaffolding and support to make these tasks happen. Maybe they aren't worth it? On his current path he'll be doing DE in a few years. Is it worth it? What then? Does it lead to employability?

I've met people whose kids had serious gaps between their life/social skills and their academics. So they could do DE classes in math but not stand in line or have expected behaviors in a class. 

It sucks that it's so hard for you to get help where you are. We've been blessed with a good team, good providers, and we've been able to have these frank discussions about what to focus on. And all of them say to focus on behavior and skills, not the academics. He's so clearly smart (even my ds) that they're way less concerned about his academics and more concerned about behavior. But I can see where if your ds is that extremely capable, it doesn't seem like the right trade off. So I don't know. But you could do the internal test yourself. What does this look like at 20 and what will you be crying over and what will you not care about?

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The people who get the most out of my ds are bending over backward, both providing support AND using his at least secondary perseverative interests. So his SLP to work on reading or conversation is going to bring in materials from his special interests. And this is someone from an autism school. It could be that a homeschool market english class isn't going to quite get there with the combo of personal support and super high interest that it would take to get him over some hurdles. 

When I look at unusual schools online that are successful with the funkiest mixture of kids (ASD + high IQ), that's usually what they're doing, super high interest plus super high support that leads into independence skills. That would be sort of my dream of where I'd be as a facilitator, unfortunately not my reality. But I can see where things could get really murky with an online course in a traditional market with someone who has no clue about ASD who's not bringing any of that. 

Do you ever do some kind of recap after each session where you go through what was taught, what questions he had, get the assignments into his planner, and coach him how to make the boring assignments more high interest or to help him over his initiation hump? That after the class thing is a strategy in this book (title?) on how to be an A student, but it would work well for this. https://www.amazon.com/How-Become-Straight-Student-Unconventional/dp/0767922719/ref=sr_1_1?dchild=1&keywords=how+to+be+an+a+student&qid=1616819545&s=books&sr=1-1

Now I'm kind of thinking out loud here about how I deal with my own initiation humps. Part of it is realizing you have an initiation hump and then it's using your cognitive to have a strategy. I have more than one. But that could be really good support to start getting him there, and you could talk about the language of initiation humps and how you know you're having one and methods you use to get over them. (peppy music, starting right away on the task while you're already in mode from finishing the online class, doing it together with a peer so you ride on their energy, etc. etc.) There are lots of strategies, and he can have a compiled list of strategies to try. More self aware people figure this out for themselves. The fact that he isn't is both immaturity and a deficit of self awareness. He cannot solve a problem he doesn't realize he has. 

https://speakingofautismcom.wordpress.com/2020/03/24/task-initiation-executive-functioning-and-autistic-inertia/  Here's a blog with someone talking about how they deal with their initiation issues. They suggest the term "autistic intertia" which I think is very well put. 

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7 hours ago, PeterPan said:

Ok, some of this doesn't make sense to me and some does. You've trained your kids on steps for independence for so many other things that I'm surprised you haven't trained the steps for independence for the online spanish sessions. It seems like a totally reasonable goal. For my ds it took work to get him able to do his tele sessions independently. Tonight, my ds saw I had made nachos for myself (a light dinner after a long day) and wanted some. I told him to go ahead and make them, and reality was he didn't know the steps. He CAN do it, but it would be easier to let me than to rifle through his brain and figure out the steps. So I did some faded prompts (what do you need, what goes on next) and he figured it out. So I think getting your ds to a point where he does his spanish sessions independently would be a great goal, an attainable goal.

Now the cookies, that makes sense to me as something where he'd need more structure at first. My ds can cook independently if the steps are written out as bullet points. This is something we work on and I have a printed life skills level cooking curriculum for him (Cooking to Learn). You could simply write/type out your recipe, put in a page protector, and boom he now has a growing notebook of things he can make independently. Don't forget to put the safety steps. We started my ds reheating soup tonight and came back to see he hadn't turned off the stove!

Oh, he can do all of those things...he just won't. He is perfectly capable of making the cookies. I have written a ridiculously detailed, step by step recipe that even my 7 year old can follow completely independently. The 11 year old is in charge of making lunch once a week and with scaffolding (and under duress) can make nachos, quesadillas, boxed mac and cheese, etc. But no matter how much he wants cookies, he would never make them. I could order him to make cookies, but I want him to choose to make cookies. Or, really, choose to expend energy on anything that he finds interesting/enjoyable/beneficial.

And, obviously, I don't particularly care if he eats cookies.

But, the same pattern holds true for his Spanish lesson (and gym and art and bike riding and ...). He certain can set everything up, but if given the choice of set-up = Spanish lesson, no set-up = no Spanish lesson, he would simply opt out due to not wanting to do the itty-bitty amount of work. And that is where my resolve crumbles, because I have no problem letting natural consequences limit how often he eats cookies, but those Spanish lessons are one of the only times he interacts with a non-family member each week, and they are something he greatly enjoys and benefits from. And I am always very hesitant to make an ultimatum (if you won't step up and do your own prep work then we will have to end the lessons) unless I am perfectly happy with either choice...and in this case, for his mental health, I'm not.

So I keep doing all the work in many areas of his life (hygiene, academic, social, recreational, etc) because every time I pull back even a little, he makes it abundantly clear that he is not ready (willing? able?) to step up at all. And letting him completely forgo hygiene, academics, socialization, recreation, simply isn't an option. And, in fact, the more I let those things slide, giving him an opportunity to feel their lack and perhaps make them a priority, the more blah and dis-regulated he becomes and the less motivation he has for anything. 

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My guess is there is an internal anxiety roadblock. I think that is usually the case when a person wants to do something--say, the Spanish lesson--but can't bring themself to take the steps to make it happen. The anxiety will rear its head at the thought of setting things up, making the barrier to initiating the task feel insurmountable.

Maturity might help. My ds15 seemed pretty hopeless at 11 and 12; by 14 I was seeing huge leaps in personal motivation and responsibility, and now at almost 16 he manages his online classes independently. There are plenty of challenges that haven't gone away but there has been huge progress.

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43 minutes ago, wendyroo said:

natural consequences

Learning from natural causes requires inferencing, and that is fundamentally poor with autism. So I agree, he's not likely to learn from inferencing or natural causes or experiencing the consequences of his decisions.

Now I will say, what *does* change that cookie cycle is interoception.

1) I recognize my body's hunger signals=affective/hypostatic emotion.

2) I realize that getting food would solve my problem.

3) I decide to go make/find something using my current skills.

You're not very motivated to make the cookies if your body's hunger signals aren't getting through to your brain and telling you. It's the critical thinking triangle of narrative language. https://mindwingconcepts.com/products/the-critical-thinking-triangle-in-action-1  

43 minutes ago, wendyroo said:

So I keep doing all the work in many areas of his life (hygiene, academic, social, recreational, etc) because every time I pull back even a little, he makes it abundantly clear that he is not ready (willing? able?) to step up at all.

Does that pdf on faded prompts give you any ideas on how to slowly transition it from *you* doing it to *him* doing it? I agree, he's not going to decide to clean his room simply because you let it get messy. We've been through this with my ds, especially on the room thing. He uses fresh pjs every day because he gets wet/damp at night, so there is this constant laundry flow. He is willing to leave anything wet on the floor and ruin the rug, oh my. So I get it. And I will say in our house I'm all on board with the idea of faded prompts that build eventually to automaticity and independence while the other parent finds it more pragmatic to just walk in and tell him what to do. But the doing was not the issue. It's the initiating of the action. Now if there's outright noncompliance, sure that's your ODD/anxiety/whatever piece. But if he's not initiating, that's your autism thing and needs autism strategies. 

So for instance, one component of EF=executive function is delayed memory. So if you tell him the night before the plan, that in the morning he's to wake up and put his pjs in the hamper not on the floor, can he do it? The remembering piece is the EF and hence the ADHD. But the waking up feeling like crap and not wanting to do it is the meds (or that meds haven't kicked in). And the going on to do the thing they habitually do and needing prompts to develop a new step in their routine is the autism. 

To me you're just describing normal support level 2 autism. I wish I had some great solution. In our house everything devolves without support. It can be faded support, but it's significant support. Autism support level 2 is significant support.

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7 hours ago, PeterPan said:

Has everything gotten too hard? It seems like he requires SO much scaffolding and support to make these tasks happen. Maybe they aren't worth it? On his current path he'll be doing DE in a few years. Is it worth it? What then? Does it lead to employability?

He lies about tooth brushing. He lies about putting the library book he finished in the proper place so I can return it. He lies about sharpening his pencil to be ready for his comic drawing class (that he loves and chooses to attend every week).

Every single morning he goes in to shower with the full knowledge that I will be waiting when he is done to smell if his hair is clean. Every single morning he goes in and "showers" by barely getting wet, comes out and fails inspection, and has to go back in and try again. Sometimes this cycle repeats for a second time in a morning! He has products to support him (his choice of bath products, wall-mounted pump bottles, swim goggles, washcloths and poofs and a scalp-massager, etc). We have read countless social stories about the importance of hygiene. He has had long and extensive mentoring and prompt fading. We spent A YEAR supervising him every morning to ensure that the skills were easy for him.

At this point, we have spend two full years, and hundreds and hundreds of hours, working on getting him to be able to shower. And it feels like we have made no progress.

Obviously, I agree that rudimentary hygiene is more important than Spanish fluency or formal logic or advanced math. OTOH, he enjoys (and I think takes pride) in his academic accomplishments, while the fact that he can't make himself shower or do other tasks that he feels he should be able to are a source of frustration and disappointment to him. He has been watching a lot of videos about ADHD because right now he hates that part of himself. So I have very mixed feeling about backing off the academic goals...which are difficult for him, but he is making HUGE progress that he can legitimately feel pride about...to put more focus on life skills.

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1 minute ago, wendyroo said:

We spent A YEAR supervising him every morning to ensure that the skills were easy for him.

I'm trying to think about *why* he's not doing it. You think it's PDA type demand avoidance and just flat being contrarian? You think it's a kind of rebellion or statement of defiance? You think it's a spiritual/moral gap, like not knowing why he should comply? My ds doesn't do this honestly. And I don't know if it's that I've done something right (likely NOT, lol) or that he's just different right now. I imagine he could. If you want to try it, I read my ds the book of Revelation and told him God wins and we want to see him in Heaven and that he should therefore obey and listen to God. But I really don't know that that kind of perspective taking and social thinking (what God thinks about his actions) factors in at all. But if you wanted to try, sure some kind of moral/spiritual approach could be an option. I'm very b&w about religion. (everybody needs to do what's right, God wins and we want to be on God's side, etc.)

7 minutes ago, wendyroo said:

He has been watching a lot of videos about ADHD because right now he hates that part of himself.

That's interesting. You're finding the videos or he's finding them trying to learn about himself?

http://jimtaylorknowsautism.com/  We met Jim Taylor at a convention a couple years ago and he took a few minutes to talk with ds. He had given a very interesting talk on a case he had worked with to reduce recidivism. It was a VERY high IQ individual on the spectrum who was in jail repeatedly for child pornography type charges. The person had zero remorse, zero empathy, felt his crime hurt no one, and didn't think it was reasonable that society kept reimprisoning him. He also had some less than stellar ways of busying his day (hours of m*astur****). So Jim Taylor got called in by his gov't to try to work with this fellow to see if they could keep him out of jail. And they were only going to give him a limited number of sessions (10, 13, I forget) to do this magic cure.

JT was at a loss and finally thought ok, it's not MY problem it's HIS problem. So he played chess with the guy each session to build rapport and got out from him that there was this empathy gap. So then he's like what are YOU going to do to figure out what it is? The guy proceeds to start researching it and when they meet again later the guy's life was totally different. There were also some inbetween steps there, like the guy deciding to take up exercise and build a new habit to replace the time consuming "m" habit. But basically it was the guy's problem to figure out his solution and that's what he did. And when he did, he developed remorse and changed.

And that's what he said to my ds. He asked my ds what his biggest problem was in life, and my ds said he was BORED. And then JT says WHAT ARE YOU GOING TO DO ABOUT IT? And they talked about some options, but it was a really pivotal point for us in breaking the blame shifting. Up till he was called on it by this man, ds had blamed ME for his boredom, the thing he considered his biggest problem in life. So it took a while, but he began trying to solve his boredom problem. Now his methods might be really screwy and often need facilitation. But still you could see the shift.

I have no clue if any of that applies. I'm just telling the story. But if you want someone on a totally different level who's perfectly capable of dealing with a super high IQ individual on the spectrum, there you go. Write JT, see if you could do sessions via tele. He's in Scotland I think. He's the real deal, a profane straightforward man who isn't going to mince words.

Oh I know why I was telling that story. I'm just trying to figure out what that means about him watching videos about ADHD, what it means that he hates parts of himself, and then figure out what you can do with that. If it means what it sounds like literally, then you're saying he recognizes a problem and is trying to solve it, yes? Does he ever spend time researching autism or is it only ADHD? There can be an EF/ADHD component to initiation, sure. But I think like Maize says it's more the anxiety and that neurological ASD piece. 

Or suggest he research interoception and see if that would give him the data? I mean, what an amazing thing if he's trying to research to understan himself better and find solutions? Kelly Mahler has an online course he could do. Or get him OT via tele with someone who is highly knowledgeable about interoception. 

20 minutes ago, wendyroo said:

he is making HUGE progress that he can legitimately feel pride about

That seems really good!! So if you were to ask him the Jim Taylor question, what would he say is his biggest problem in life? I'm just still finding it interesting that he's researching ADHD.

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21 minutes ago, maize said:

Maturity might help. My ds15 seemed pretty hopeless at 11 and 12; by 14 I was seeing huge leaps in personal motivation and responsibility, and now at almost 16 he manages his online classes independently. There are plenty of challenges that haven't gone away but there has been huge progress.

So, if I can ask, how did you handle those 11 and 12 years?

If someone were to tell me to just brush DS's teeth for him for 2-3 more years and then he would have the maturity, self-control and initiative to do it himself, I would be all over that plan. Because we have been working on the goal of him doing it independently for 8 years now, and we are further away from achieving the goal than when he was 5 years old...and DS, DH and I are all frustrated, disappointed and discouraged.

But I worry. If 8 years of work have not achieved the goal, can I afford to back off and lose any time?

Or, if someone were to tell me to just stop supporting him at such ridiculous levels and let him sink or swim about some age-appropriate skills, then I would be all over that plan. Because I am tired of treating him like a untrustworthy toddler.

But I worry. Because he has shown that once he starts "sinking" he loses any "swimming" ability he might have had and inevitably freezes up and fails entirely...and takes a big hit to his self-esteem in the process.

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https://www.amazon.com/gp/product/1849058768/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

Hello, I finally found that book!! I had the author's last night wrong. It's Teaching Your Child with Love and Skill by Joyce Show. She's an MD and she has a chapter where she goes into the neurology of initiation. It's a great book so maybe you'd get some ideas if you found a copy. I liked the *tone*.

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3 minutes ago, wendyroo said:

if someone were to tell me to just stop supporting him at such ridiculous levels and let him sink or swim about some age-appropriate skills, then I would be all over that plan.

I'm not sure, is someone encouraging you to do that? Autism means he's less likely to learn from inference and cause/effect.

4 minutes ago, wendyroo said:

DS, DH and I are all frustrated, disappointed and discouraged.

I guess I'd be pretty encouraged by the idea that *he* is trying to research his challenges. That's really interesting and a good sign. 

And are you literally saying your ds wants to do better and can't figure out how to do better? That's interesting too. You could show him the page of faded prompts and ask him where you are with prompting, what level of prompting he currently needs to be able to do the task, and then discuss openly a fading process. As you say, it's usually hidden from the dc but maybe that is backfiring. Maybe he needs to read about autism.

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1 minute ago, wendyroo said:

So, if I can ask, how did you handle those 11 and 12 years?

If someone were to tell me to just brush DS's teeth for him for 2-3 more years and then he would have the maturity, self-control and initiative to do it himself, I would be all over that plan. Because we have been working on the goal of him doing it independently for 8 years now, and we are further away from achieving the goal than when he was 5 years old...and DS, DH and I are all frustrated, disappointed and discouraged.

But I worry. If 8 years of work have not achieved the goal, can I afford to back off and lose any time?

Or, if someone were to tell me to just stop supporting him at such ridiculous levels and let him sink or swim about some age-appropriate skills, then I would be all over that plan. Because I am tired of treating him like a untrustworthy toddler.

But I worry. Because he has shown that once he starts "sinking" he loses any "swimming" ability he might have had and inevitably freezes up and fails entirely...and takes a big hit to his self-esteem in the process.

I am a different person from you and my children are of course different, so my approach may be completely irrelevant. 

My kids have a mix of ADHD and anxiety-linked stuff going on. I have very poor executive function myself so I am limited in what I can focus on. 

I don't make my kids shower. Ds probably went months between washing his hair at times. He was never stinky, at least not that I noticed. I kept his hair cut short so the greasiness wasn't super obvious. I made sure he had clean clothes. I made sure he had dental cleanings every six months; I think he was decent about brushing his teeth but I frankly wasn't monitoring. I'm not capable of the level of consistent control and follow-up you describe.

I focused on mental health; a big piece of that for my kids is keeping them active. We've done dance, gymnastics, tumbling, martial arts, etc. I enrolled him in a twice-a-week project based learning group where he could engage with other people. I enrolled his younger brother in kindergarten because older brother couldn't lay off him and they needed time apart. 

Mostly I tried to stave off depression and give him time to grow. I don't think brain maturity can be forced and my understanding is there is usually some delay in ADHD kids.

About a year ago he started showering regularly and paying more attention to personal grooming.

There's a still a lot going on with him, but many of the issues from four years ago have resolved on their own.

Since you asked about the experience of adults who had ADHD as kids I will add one more thing, one that absolutely plays into the way I parent my kids. As a child, if someone put pressure on me to do something, I felt an immediate and consistent urge to not do that thing. I was infamous for the efforts I would go to to not do something like brushing my teeth when told--I would go in the bathroom, turn on the water, get my toothbrush wet, and stand there letting the water run and not brushing my teeth. When I was supposed to practice violin I would record myself playing the songs once then play the recorded tape over and over to pretend I was practicing. I put more effort into not doing the things than it would have taken to do the things.

Even if the thing I was told to do was something I would ordinarily want to do, the fact that someone was trying to make me do it prompted a need to resist. 

I don't have any magical solution to offer for that but I avoid being directive when I see similar knee-jerk reactions in my kids.

Similarly I avoid asking them questions if the question is likely to solicit a lie--which is usually just a spur of the moment effort to avoid parental displeasure.

I know this is counter to all the parenting recommendations regarding consistency etc., and I genuinely don't know how it would work out with other kids. But with my own children I have seen repeated examples of kids simply maturing past problematic behaviors.

I try to safeguard mental health and safeguard relationships and keep some skill development and learning going. And I let a lot of things slide.

 

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We've taken to using Alexa (amazon's assistant) with ds. We had him set his own reminder on the fire tv to remind him to feed the dog at a certain time, because the dog food bin is near that room. He was trained on the task but we were always prompting him. So dh told him to set an alarm so he could remind himself. 

We don't do wifi, but I've been thinking if I had it I would get great use out of am amazon product, like maybe an Echo Dot, in my bathroom. I set timers on my phone most times when I shower, because if I don't I forget why I'm in there and start lollygagging. I surprisingly frequently forget steps and come out not having done this or that and have to go back in, lol.

So I think if a young person has a support level 2 and is trying to be more independent and problem solve, they might like setting their own alarms. Like they could say "Hey Alexa, remind me in 4 minutes to wash my hair." You can have recurring alarms. I don't know if you can have sequences, but you're able to teach Alexa skills. He might be able to program a shower sequence as a skill for Alexa where it walks him through the reminders. 

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6 minutes ago, maize said:

I don't make my kids shower. Ds probably went months between washing his hair at times. He was never stinky, at least not that I noticed. I kept his hair cut short so the greasiness wasn't super obvious. I made sure he had clean clothes. I made sure he had dental cleanings every six months; I think he was decent about brushing his teeth but I frankly wasn't monitoring. I'm not capable of the level of consistent control and follow-up you describe.

This. Dd's oral hygiene was poor enough (spotty, not compliant, not well done when independent) that we didn't pursue braces for her till 14. It took that long. And by that point her mouth issues were a mess and will basically require surgery at some point to fix. And for ds and hygiene, well for several years I would basically take him in to get his hair washed. We'd tell him he was getting a hair cut and that's how it got done. He would just go for streaks where he didn't want to and it was fine, then you're getting your hair cut. You have to take them to a salon, not a barber typically, if you want the hair washed. And they'd talk hygiene and he'd do better for a bit and then regress back.

10 minutes ago, maize said:

Similarly I avoid asking them questions if the question is likely to solicit a lie--which is usually just a spur of the moment effort to avoid parental displeasure.

Yup. There's no point asking when it's just pinning them to the point where they lie. That page of faded prompts talks about the idea of faded verbal prompts. The most direct verbal prompt is to tell someone what to do or to ask them whether they did it. But there are ways to FADE that, so you're not so much asking as mentioning. 

"You need to come take your vitamins." "Did you take your vitamins?"

vs. 

"When the round you're currently playing is done tell yourself to come take your vitamins." 

vs.

"Your vitamins are on your plate." 

That last one is a really nicely faded prompt, where you're not making a demand, not telling them what to do. You're just making an observation and letting them get there with some inferencing.

Fading prompts is kind of a pain in the butt, so it's not like you fade and oh wow now he does it, lol. It's just a different kind of pain in the butt. So a pushing the responsibility for the inferencing and problem solving to the dc rather than leaving it all on mom like some kind of nurse warden in One Flew Over the Cuckoo's Nest.

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19 minutes ago, maize said:

Similarly I avoid asking them questions if the question is likely to solicit a lie--which is usually just a spur of the moment effort to avoid parental displeasure.

This. Please do not ask if something is done or if he has questions. Formulating questions is actually very hard; being unable to even come up with a question is part of the problem of being unable to direct one's thinking. When teaching at a very good middle school, I found that only the strongest students were able to generate a specific question without a lot of support.

"Is ___ done?" which suggests, "It should be, and I'm going to be unhappy with you if it's not," can instead be "Show me ___ so far," and, "Okay, let's think about what the next step can be."

A blank screen/page is the worst. To provide more scaffolding, you can provide a worksheet that already has a little bit started and an anchor chart (which could even be a bookmark) of tips like Look back at what it says in the book and Can you add one more thing?

Give ridiculously small steps and praise ridiculously small progress. I mean, I have my helper app (Habitica) prompt and congratulate me on emptying the dishwasher, even though it has to be done at least once a day, it takes only about 5 minutes, and I'm old enough to be a grandmother.

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I'm trying to think about *why* he's not doing it. You think it's PDA type demand avoidance and just flat being contrarian? You think it's a kind of rebellion or statement of defiance? 

I don't sense any PDA from him. His number one issue seems to be a complete and utter lack of internal motivation to do anything. If I put it all on the line and tell him that if his teeth are not brush, well, in 3 minutes that he will lose screen time that day - he comes back with pristine teeth. It is not difficult for him. He knows the steps, he knows how to check for himself, he knows how to get the job done correctly the first time. But he could never in a million years make himself do it just because he knows it is the healthy, socially acceptable thing to do (which he does) or because he is scared to death of getting a cavity (which he is).

He responds well to immediate, concrete carrots and sticks - which is great, and we use that to build skills - but then we can never successfully fade the rewards because he immediate reverts to the old/easier behavior even if he has months or years of consistent practice with the new habit.

And if we're talking about employability skills, brushing teeth, showering, and having the internal motivation and self control to do basic necessary tasks adequately the first time without requiring a supervisor to hold his hand or monitor his progress every five minutes, seem pretty vital. Even working at Target, he cannot come to work stinky or put products on shelves any which way he finds easiest if his boss has shown him the "right" way. And if he knows how to properly put the products on the shelves, his boss is not going to put up with him choosing to do it wrong, lying about doing it or needing his work inspected constantly to motivate him.

2 hours ago, PeterPan said:

And are you literally saying your ds wants to do better and can't figure out how to do better? That's interesting too. You could show him the page of faded prompts and ask him where you are with prompting, what level of prompting he currently needs to be able to do the task, and then discuss openly a fading process. As you say, it's usually hidden from the dc but maybe that is backfiring. Maybe he needs to read about autism.

Yes, he wants to do better. This is kind of all coming to a head recently because for the last few months he has frequently been in tears. And, yes, clearly this is probably puberty related, but some of what he is crying is heart breaking.

One day he was working on outlining a stupid, simple essay for his Lantern English assignment. He had avoided even starting the assignment for days, had lollygagged and wasted hours, was enduring a growing mountain of natural consequences. I had done everything I could think of - I printed him out an outline template, I sat with him and brainstormed, I encouraged him to set a timer and just work for 1 minute and see what he accomplished, I offered to sit with him, I offered to scribe for him. Nothing was working. I finally snapped and told him to get his butt in action and I wanted the outline written NOW. I brought over a pile of chocolates and said I was eating one every minute and when the outline was done to my satisfaction he could have what was left. I had brought ten, thinking that would be enough. Even I was surprised and a bit irked when the job was done, and done well, in less than 3 minutes. He burst into tears sobbing about why everything had to be so hard and why he couldn't have done his outline days ago.

And yes, the chocolates worked, but realistically I cannot incentivize him every minute all day every day. We would need a sticker chart as big as Nebraska to offer him as many concrete rewards as he still needs every day - for tooth brushing, putting clothes in the hamper, closing the front door, picking up his wrapper, putting his dishes in the sink, etc. He has been required to do all those things consistently for years and years, and yet none of them are automatic yet.

Quote

That's interesting. You're finding the videos or he's finding them trying to learn about himself?

I'm finding the videos...he does not have the initiative to do that. He will just keep clicking randomly on whatever YouTube offers him.

Quote

And that's what he said to my ds. He asked my ds what his biggest problem was in life, and my ds said he was BORED. And then JT says WHAT ARE YOU GOING TO DO ABOUT IT? And they talked about some options, but it was a really pivotal point for us in breaking the blame shifting. Up till he was called on it by this man, ds had blamed ME for his boredom, the thing he considered his biggest problem in life. So it took a while, but he began trying to solve his boredom problem. Now his methods might be really screwy and often need facilitation. But still you could see the shift.

I would say that my DS does feel bored, but he only seems to have two strategies for fixing it. 1) His happy place is sitting in the Lego room aimlessly moving Legos around. He does snap random Legos together, but he's not "building" in the sense of goal-oriented structure creation, but more just sensory manipulation. This is probably his most "preferred" activity in that it is safe and doesn't require effort or choices, but in the end I think it leaves him more bored and dissatisfied than he started. 2) I think he gets a thrill out of being deceitful and tricking people. The more effort we go to to lock up knives, matches, power tools, medications, etc. the more he tries to outmaneuver those safeguards. And it's not that we don't let him use knives, matches, power tools...he has no interest in using them on our terms...or even really using them at all...he is just interested in lying and sneaking to get to thing he isn't supposed to have.

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17 minutes ago, wendyroo said:

He burst into tears sobbing about why everything had to be so hard and why he couldn't have done his outline days ago.

Does he have ANY awareness of what's going on inside of him as he's not doing things? I can see this isn't going to be his forte, but maybe brainstorming on naming what's preventing him might be useful for him.

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11 minutes ago, wendyroo said:

 

And yes, the chocolates worked, but realistically I cannot incentivize him every minute all day every day. We would need a sticker chart as big as Nebraska to offer him as many concrete rewards as he still needs every day - for tooth brushing, putting clothes in the hamper, closing the front door, picking up his wrapper, putting his dishes in the sink, etc. He has been required to do all those things consistently for years and years, and yet none of them are automatic yet.

They may never become automatic.

A brain just entering puberty however is going to be at its most disorganized stage. I don't think you need to project too far in the future at this point.

Some things may resolve with time and maturity, others may not. If what you have been doing to try to train behavior is having no effect, continuing to do it is not likely to change anything.

I think in your shoes I would continue offering immediate, tangible incentives for those things that are most important to you and drop all other expectations.

Get through the next couple of years and re-evaluate the path forward with hopefully a bit more brain maturity to work with.

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17 minutes ago, Not_a_Number said:

Does he have ANY awareness of what's going on inside of him as he's not doing things? I can see this isn't going to be his forte, but maybe brainstorming on naming what's preventing him might be useful for him.

None whatsoever.

And it is so disheartening for us all. Every single day/week there are repeating tasks, and every time DS and I remember the stress of the previous time and work together to come up with a new plan, a better plan, a more ADHD-friendly plan.

DS remembers how horrible he felt staring down last week's outline. He remembers how fast he was able to finish it once he actually started. So DS decides he is going to do his outline this week on Monday rather than letting it go. He is going to reward himself with half an hour of online chess when he is done. He asks me to remind him of his goal at morning snack. In fact, he decides he is going to get it out of the way first thing so it is not hanging over his head. By golly, by snack time his outline will be done and he will have already gotten to play chess!!

And 5 minutes later he sits down and the whole plan falls apart. He has the best of intentions, he could have virtually been done already, but instead we are right back where we were the previous week with me offering every scaffold I can think of and him just not being able to do it.

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Just now, wendyroo said:

And 5 minutes later he sits down and the whole plan falls apart. He has the best of intentions, he could have virtually been done already, but instead we are right back where we were the previous week with me offering every scaffold I can think of and him just not being able to do it.

I've made plans like that before, lol. So have all of us. Like the plan "I will procrastinate less." I mean, it's a good plan, but I'm somehow here on this forum instead of actually procrastinating less 😉 . And then I'm frustrated with myself, trust myself less, and am no further along in my plan. 

Since he's able to make plans like this, maybe you should do some work with him on what makes a plan realistic FOR HIM. And that might be hard, because he might not know. But clearly setting up elaborate rewards for himself after he's going to be done isn't doing it... 

I've definitely had to do a lot of digging around inside to actually figure out what makes me do things and what doesn't. Lots of things that sound good on paper utterly fall apart when I actually try them, but some don't. 

I know that's not much of an answer... just sharing what has worked for me. 

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1 hour ago, wendyroo said:

If I put it all on the line and tell him that if his teeth are not brush, well, in 3 minutes that he will lose screen time that day

So honestly, we only brush teeth at night. They'd like us to brush once a day, but night is what I do. So yes there's that sort of no screens if you don't do this thing, because he knows at 8:30 he's going to go up and shower, finish eating, brush his teeth, etc. On the occasions when he balks, I point out that *I* own the Nintendo and that I will *sell* my nintendo to pay for fillings.

1 hour ago, wendyroo said:

But he could never in a million years make himself do it just because he knows it is the healthy, socially acceptable thing to do (which he does) or because he is scared to death of getting a cavity (which he is).

That just sounds like immaturity. Probably by 18 it will have moved on as an issue. Faded prompts. If you're telling him and you don't like telling him, it's not going to go from you telling him to him telling himself. There's a whole process of fading the prompts there.

1 hour ago, wendyroo said:

He responds well to immediate, concrete carrots and sticks - which is great, and we use that to build skills - but then we can never successfully fade the rewards

I'm confused. I've talked about faded *prompts* but what do you mean about fading *rewards*? We want rewards and motivators to move from external to internal, from extrinsic to intrinsic. So there are natural consequences (you return clean and you get more screen time), you return dirty and you'll be sent back, but that's not the same as a reward. I'm not handing him the remote there and could just as easily decide I'm watching a movie or we're watching a movie as a family. Simply to be in our space and keep going and have the privilege of being there there are responsibilities.

The behaviorist had us tie together *privileges* and *responsibilites*.

But as far as motivators and rewards, we have to be very careful with them. My ds is not motivated for very long by stuff, so as much as possible, except for rare situations, we're going to try to have the motivator be a social thing, something where being WITH US is the motivator. So I'm going to say "While you brush your teeth, I'll get a game set up for us. What game do you want to play?" Suddenly being with me is the reward, not a cookie or token, and I don't need to fade that. 

1 hour ago, wendyroo said:

Even working at Target, he cannot come to work stinky

Does he do outings? We conveniently structured weekly outings with his out, something he was VERY MOTIVATED to be able to do, and she absolutely is gonna smack him down and tell him to go get clean if he comes out looking dirty or unkempt with hair not combed or clothes askew. So that was sort of a sneaky way we had to getting him clean once a week when once a week would do. Now once a week won't do, lol. Now he gets little pimples and looks oily if he doesn't shower daily, so we had to build that into a routine, something where to keep going and get the next thing he wanted (evening screen time, evening time with us) he has to shower. If he comes out unshowered, he just gets sent back. 

1 hour ago, wendyroo said:

lying about doing it

I have a question there. What motivates him or what could be a noncombative, non confrontational, non anxiety provoking but instructive consequence? For instance, my ds is very aware about money and takes pride in the small amounts of money he has. He also destroys property when angry. So he pays for the property he destroys and it's just a quiet natural consequence. He has figured out pretty quickly that if he destroys enough property he doesn't have the money to buy the things he wants (a new Nintendo game, whatever). He wants this screen capture thing (I have no clue), and again destroying property means less money to pay for that. 

So I don't know what your ds would be motivated by with consequences, but I think the lying might be the one to find one for. It's really troubling. I don't know what the consequence should be and I think you'd be 30 ideas if you had a thread on it, lol. It also needs some positive instruction about what a lie is (ie. picture books) and game plans for when you're tempted to lie (when you feel this and want to do this, do this instead). And that goes back to that interoception thing too, where if he could recognize his feeling of anxiety or frustration while subtle, he could use cognitive strategies to work around lying. Blame shifting is sort of the inverse of personal responsibility and interoception and has a cousin in lying. In blame shifting, you're not acknowledging how you feel but are blaming your discomfort and how you got there on someone else. So realizing how you feel and realizing how/when/why you got there (interoception) compels you to take personal responsibility. 

And you know, maybe that wouldn't happen. But I hang on an interoception FB group and find it a marvel to see the shifts in personal responsibility, away from blame shifting and excuses and toward self awareness, self advocacy, and personal responsibility. It's sort of that phase 2, phase 3 ripple out effect.

1 hour ago, wendyroo said:

for the last few months he has frequently been in tears.

Have you updated with his pdoc? I thought my ds' crying was puberty and the pdoc didn't see it that way. 

1 hour ago, wendyroo said:

And yes, the chocolates worked, but realistically I cannot incentivize him every minute all day every day. We would need a sticker chart as big as Nebraska to offer him as many concrete rewards as he still needs every day - for tooth brushing, putting clothes in the hamper, closing the front door, picking up his wrapper, putting his dishes in the sink, etc. He has been required to do all those things consistently for years and years, and yet none of them are automatic yet.

Oh my. Motivators and tokens don't work long term for my ds. I met a man was saying he wanted his 20-something ds with ASD to be in a group home and for them to use tokens and rewards like this. Apparently that's how they roll. I don't know every person, only my ds, but our data was that rewards/tokens faded with ds, that he got bored with them and didn't find them motivating. Our behaviorist had us looking at what is intrinsic, what is relational. My ds is socially motivated, so that was a way they could go. But I don't honestly know if that works for all kids, as I only know my house. 

Or put another way, we had this scenario where "breaks" for ds and rewards for ds were time AWAY from me and we had to flip that to the reward being time WITH me. So that relationship is always my highest motivator and the one I'm appealing to. Do something so we can be together. 

But the behaviorist also had the privileges of being in our family, responsibilities of being in our family thing too, lol. She had us teaching it as the 11th Commandment. lol.

1 hour ago, wendyroo said:

He burst into tears sobbing about why everything had to be so hard and why he couldn't have done his outline days ago.

So here's the thing. You didn't care that he ate the chocolates. What really bugged you was that YOU had to drive it. So you could make a list of all his initiation strategies (and make a long one!! like google and find all kinds of initiation strategies people with anxiety, ODD/PDA, ADHD, etc. use) and then laminate that baby and hand it to him for the task and ASK HIM TO CHOOSE WHICH STRATEGY. Then he's choosing the strategy and using his cognitive and becoming more intentional and independent. That's a faded support.

We do this as adults, yes? We choose our strategy to get ourselves to do this. It's just you need to make what is internal visible to him.

1 hour ago, wendyroo said:

I'm finding the videos...he does not have the initiative to do that. He will just keep clicking randomly on whatever YouTube offers him.

Ah.

1 hour ago, wendyroo said:

The more effort we go to to lock up knives, matches, power tools, medications, etc. the more he tries to outmaneuver those safeguards. And it's not that we don't let him use knives, matches, power tools...he has no interest in using them on our terms...or even really using them at all...he is just interested in lying and sneaking to get to thing he isn't supposed to have.

I'm mixing up kids. Even your oldest needs this level of caution?

Is there a grandpa figure available who would have time to do WORK with him? If he's bored and doesn't know what he likes, then the type of work doesn't matter. And he should actually use the power tools. He can weed whack, dig holes to plant baby trees, hold nails/screws for a garage project, whatever.

1 hour ago, wendyroo said:

I would say that my DS does feel bored, but he only seems to have two strategies for fixing it. 1) His happy place is sitting in the Lego room aimlessly moving Legos around. He does snap random Legos together, but he's not "building" in the sense of goal-oriented structure creation, but more just sensory manipulation.

You might ask him and see what he says his biggest problem is. I only say this because it would be interesting to know. On the legos, my ds stopped completely with legos when on a certain medication and has resumed since we changed things around. So if he's depressed and needs some medication changes (the crying), then maybe that will follow. In our house they were connected.

41 minutes ago, wendyroo said:

DS remembers how horrible he felt staring down last week's outline. He remembers how fast he was able to finish it once he actually started. So DS decides he is going to do his outline this week on Monday rather than letting it go. He is going to reward himself with half an hour of online chess when he is done. He asks me to remind him of his goal at morning snack. In fact, he decides he is going to get it out of the way first thing so it is not hanging over his head. By golly, by snack time his outline will be done and he will have already gotten to play chess!!

And 5 minutes later he sits down and the whole plan falls apart. He has the best of intentions, he could have virtually been done already, but instead we are right back where we were the previous week with me offering every scaffold I can think of and him just not being able to do it.

So the strategy he used last week (mom sits beside you and funnels you a chocolate for each line you type or whatever the motivator was) did not work this week? Or you're saying he worked himself up on the want to but still couldn't get over the initiation hump?

I'm trying to find for you a list of initiation strategies, but most of them are viewing it as an EF/procrastination thing. Even when the person is not procrastinating, reality is there's that massive amount of fuel needed to lift the plane. I never realized for years that I got that by getting ANGRY. I kid you not. I would wait, get really flustered, and then yell a bit and begin flurrying and blame people. But I think I needed that jolt to get me going and I was riding it. Again, interoception. When I realized that's what I was doing to get over my initiation hump, I could finally find other ways. 

I don't know, you've got hard stuff. 

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1 hour ago, wendyroo said:

I finally snapped and told him to get his butt in action and I wanted the outline written NOW. I brought over a pile of chocolates and said I was eating one every minute and when the outline was done to my satisfaction he could have what was left.

Ok, so THIS is what worked. Did he do THIS and it didn't work this time? Did he:

-yell at himself and tell himself out loud to do it NOW

-set a timer to go off in one minute intervals (preferably a visible timer like the Time Timer app)

-look forward to the rest of the pile when he was done

There is a lot of power in verbal affirmation and the power of our voice. When I was birthing ds, who was rather large at 11 lb 1 oz, I had a moment where it was just easier NOT to than to push. And frankly I thought I was going to die if I did, lol. So my teeny tiny, petite, very nice, quiet midwife YELLED at me, like really forcefully, army style "Get that Baby out NOW!" And turns out it's actually a thing. Yelling at someone shocks their system and boom the surge kicks in and you do it.

So he can use the power of his own voice to tell himself what to do. 

And if that sequence is really dependable with those steps (stern discussion with ones self, treats every one minute, remainder when done), then hey who's complaining? Then your only goal is to make it independent and fade  your part in it. But you don't give a rip if he eats a bowl of candy to get through an outline, mercy.

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7 minutes ago, PeterPan said:

I never realized for years that I got that by getting ANGRY. I kid you not. I would wait, get really flustered, and then yell a bit and begin flurrying and blame people. But I think I needed that jolt to get me going and I was riding it. Again, interoception. When I realized that's what I was doing to get over my initiation hump, I could finally find other ways. 

Oh, that sounds familiar. I've noticed myself doing this, too, especially for harder things. Like, sometimes I need to get angry to actually prompt myself. And that's really unhelpful, as you say, and once you notice you can do something different... I hope. Still working on that one. 

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1 hour ago, Not_a_Number said:

I've made plans like that before, lol. So have all of us. Like the plan "I will procrastinate less." I mean, it's a good plan, but I'm somehow here on this forum instead of actually procrastinating less 😉 . And then I'm frustrated with myself, trust myself less, and am no further along in my plan. 

Since he's able to make plans like this, maybe you should do some work with him on what makes a plan realistic FOR HIM. And that might be hard, because he might not know. But clearly setting up elaborate rewards for himself after he's going to be done isn't doing it... 

I've definitely had to do a lot of digging around inside to actually figure out what makes me do things and what doesn't. Lots of things that sound good on paper utterly fall apart when I actually try them, but some don't. 

I know that's not much of an answer... just sharing what has worked for me. 

Oh, absolutely. I have SOOOO made plans like this and failed completely.

So the fact that DS cannot yet make sure a plan and follow through with it to do a task he finds unpleasant like writing isn't what concerns me.

My concerns are 1) at 12, DS still hasn't found a reliable plan to get his teeth brushed or do other simple, everyday tasks, 2) to the best of my knowledge, DS has never successfully made an initiation plan and carried it out independently even once, so he is never feeling that rush of triumphant self-satisfaction, and 3) without that cushion of self-confidence and trust in himself, every plan that he makes and then spectacularly fails at (in his own estimation), is a blow to his already fragile mental health.

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37 minutes ago, wendyroo said:

My concerns are 1) at 12, DS still hasn't found a reliable plan to get his teeth brushed or do other simple, everyday tasks, 2) to the best of my knowledge, DS has never successfully made an initiation plan and carried it out independently even once, so he is never feeling that rush of triumphant self-satisfaction, and 3) without that cushion of self-confidence and trust in himself, every plan that he makes and then spectacularly fails at (in his own estimation), is a blow to his already fragile mental health.

That really does seem like a concern! 

I wonder if there's some really, really, really minimal plan he could start with that would bolster his confidence and his feeling that he really can make himself do things? I really have no idea what it would be... but just so that he can build on that success?? I know you're saying that "brushing teeth" and other simple tasks really ought to be such a thing, but they clearly aren't (plus, there's probably so much history of resistance that it wouldn't be a good place to start.)

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So, I don't have ADHD.  My husband does.  My youngest has autism.  My oldest might have ADHD; we're investigating, but regardless, I think my kids are so different than yours that I'm not sure a comparison is really helpful.  

I've followed your posts with admiration for something like 6 or 7 years or so....since Peter was a preschooler.  I've always been impressed at how good you are at breaking tasks into teensy tiny bits and scaffolding and structuring your kids' days into productive activity.  I don't have ADHD, but I don't have the working memory or the executive functioning or something to do that nearly so well.  I think there are times my kids could have benefitted from more structure and scaffolding and explicit instruction.  

But I wonder if you've done this too well?  I'm wondering if Peter has never been left to his devices enough to get sufficiently bored or to feel like he had to find something to do or to self initiate, because there was always a schedule and a plan that he just sort of fell into?  And he's 11, almost 12, right?  That's naturally an age when kids are pruning.  They're getting bored.  They're spacey.  They're pruning interests.  And if Peter's starting from literally never having self initiated anything, never decided "I'm going to build x with legos," or "I'm going to cook y," or "I'm going to make a chain of paperclips that is 12 feet long," well, this is just going to be a really difficult time for him.  His weaknesses are intersecting with what is developmentally normal, and that's just really brutal.  

It seems like you have high expectations.  And I think that IS wonderful, and does give your kids a source of genuine self esteem, accomplishments of which they can be genuinely proud.  And I think the nature of your kids' disabilities mean that unstructured time has at least the potential to be a disaster.  But I wonder what would happen if you did an experiment and dropped your expectations drastically?  Like, what would happen if instead of doing math six days a week, you did math four days a week?  What if writing was done only two or three times a week?  What would happen if you cut your academic expectations in half?  Maria Montessori believed in only minimal, practical academics with middle school aged kids.  She prioritized hard physical labor, socializing, and practical life and independence from ages 12-15.  You're pretty limited by the pandemic, but what if you dropped academic expectations and left a couple hours a day of completely unstructured time?  Would he, left to get sufficiently bored, eventually find something to do?  

I would prioritize physical exercise and social connection.  So, I'd do what is necessary to set up hikes with friends and Spanish.  But with other things, I wonder if you're setting him up to be contrary and argumentative, at an age where kids are developmentally wired to be contrary and argumentative?  I have super compliant kids, but I think if I told them I was going to smell their hair after they showered or threaten consequences or reward for brushed teeth, they would rebel.  So, what would happen if you stopped caring and stopped scaffolding for six months.  Maybe brush his teeth once a day and the other time, just say "Did you do your chart?" and take him at his word.  Take him at his word about showering.  I mean, would he really, genuinely go six months without washing his hair?  My autistic kid is terrified of the shower.   My oldest is dysphoric and hates the shower.  Heck, my husband has a life long fear of the shower and someone breaking in while he's in it.  My family, other than me, has congenital anti-showering genes.  But almost never do I even say anything about it, and even these kids who are petrified and dysphoric and despise the shower, two or three times a week will be like, "I really need to take a shower," and do it.  But I think the only reason we're there is because since about age 8 or 9, I've completely dropped it.  I might point out, "Your hair looks greasy," but I find it hard to believe that he wouldn't at some point initiate it.  Or maybe send him to shower but not check.  What would happen if you didn't give him the opportunity to lie about anything important for six months, by not asking questions, and just acted as if you trusted him on matters of hygiene?  Or schoolwork if it's for an outside class?  I wonder if it's possible to have too much scaffolding and so he feels no need to initiate, because he knows you'll do what's necessary?  

The true non-negotiables, I wouldn't give up on, like I'd continue to hand him meds, and I'd do what I could to facilitate social contact and exercise, but I wonder if for six months, you just truly decided not to care and trusted that he'd eventually grow into some skills with self initiation and dropped the expectations and demands dramatically, by like 50-80%?  So that he didn't feel like he was being micro managed and he began to get the feeling for his life truly being his own?  

I don't know if that would be realistic in your family.  Maybe it wouldn't.  But....the world doesn't end if the beds aren't made, if the sheets aren't changed weekly, if the teeth aren't brushed twice a day, if showers aren't daily, if everything isn't picked up.  I just wonder what would happen, if he didn't feel the weight of demands and expectations and had some room to self initiate, some time to get bored, and if he wasn't feeling like he was boxed in a corner of rewards and punishments and demands?  

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I'm confused. I've talked about faded *prompts* but what do you mean about fading *rewards*?

I guess I am using "faded rewards" to reflect the fact that eventually most people don't feel the need to be rewarded for every single little action all day. So, sure internalizing rewards...but also, over time, tasks should get more automatic and therefore require less thought overall. For example, when the water is off for some reason in my house, I have a hard time stopping myself from flushing the toilet. It is so automatic of a habit, that I never have to put any thought into deciding whether I will do it based on if I will get enough reward.

With my more neurotypical kids, I incentivize putting their own dirty clothes in the hamper for a few weeks when they are three years old. First a dime every evening they do it, then a dime every evening they do it with no prompting, then a penny every evening they do it with no prompting, and then a special treat if they go a week without forgetting. And then they are officially "big enough to remember" and they start getting fined a nickel for any evening they forget...and after a few months I can gracefully fade away the fines because it is so habitual that 99% of the time they just do it without a fuss. I don't think they find it intrinsically motivating. I don't think they particularly care about the mess of having dirty clothes on their floor or my convenience on laundry day. I truly don't think they give it that much thought...they know that the hamper is right next to where they get undressed, they know that if they drop the clothes on the floor I am just going to make them go back and pick them up, so they just do it because it is totally not a big deal.

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Does he do outings?

He HATES outings. He would always choose to stay home...preferably in a room by himself.

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So I don't know what your ds would be motivated by with consequences, but I think the lying might be the one to find one for. It's really troubling. I don't know what the consequence should be and I think you'd be 30 ideas if you had a thread on it, lol. It also needs some positive instruction about what a lie is (ie. picture books) and game plans for when you're tempted to lie (when you feel this and want to do this, do this instead).

He is most motivated by screens, but that is the one motivator that I am hesitant about. For 3 years (when he was 8, 9 and 10) he had almost NO screen time (except word processing, typing.com and educational shows with his siblings during lunch), and he had a lot less behavioral issues.

Slowly, slowly we started allowing ten minutes occasionally both because complete prohibition was not going to prepare him for the real world and because he was getting older and had more responsibilities and school requirements and we felt screen time was a commensurate privilege. As soon as he started getting any access, things went downhill. He started lying about hygiene, school and chores so he could get to screens faster. He started going to sites that were prohibited, stealing lock codes so he could play at non-allowed times, getting his younger siblings to lie and cover for him, squirrelling away and hiding in the house so I couldn't find him and see what he was playing or for how long, stealing visitor's unlocked phones to try to download games, taking the tablets outside to see if he could access neighbor's unrestricted wifi, etc.

At this point, all screens in the house are locked down like Fort Knox. He sleeps in our bedroom with a top lock on our door to keep him safe and out of trouble over night because he was stealing the tablets and staying up all night compulsively punching in random lock codes as often as it would allow him in the desperate hope of being able to play. The wifi is incredibly restricted, so that unsupervised he pretty much only has access to Google Docs and nothing that could distract him...which honestly is e.v.e.r.y.t.h.i.n.g. Because while intellectually he understand that he would rather spend three minutes writing an outline and 57 minutes free playing on screens, realistically, if he has access, he will always spend the full hour randomly browsing synonyms on dictionary.com rather than facing even three minutes of outline writing...even knowing that "choice" means no free screen time.

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I'm mixing up kids. Even your oldest needs this level of caution?

Both of my oldest two require this level of caution. It was my oldest who 6 months ago, at 11 and a half years old!!, stuck a key in an outlet. He has no common sense and firmly believes that he is smarter than everyone else and that rules obviously do not and should not apply to him.

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Is there a grandpa figure available who would have time to do WORK with him? If he's bored and doesn't know what he likes, then the type of work doesn't matter. And he should actually use the power tools. He can weed whack, dig holes to plant baby trees, hold nails/screws for a garage project, whatever.

DS refuses. DS is at my parents' for a week-long birthday trip right now. My dad offered welding, soldering, woodworking, computer programming, electronics, taking apart and experimenting with old appliances, gardening, etc. My mom offered grown up art supplies, baking, backpacking, making a terrarium, a sewing project or painting clothing. DS refused them all - he wanted to "just play legos". And he wanted to eat his favorite food boxed mac and cheese...but he opted out of that when my mom said he would have to help make it. Then he wanted PB&J sandwiches, but again changed his mind when my mom said he would have to make his own sandwich. So now, this week, when he is an "only child" with two devoted grandparents willing to make pretty much any activity happen, his plan is playing Legos and eating cheese sticks and crackers.

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1 hour ago, PeterPan said:

So he can use the power of his own voice to tell himself what to do. 

And if that sequence is really dependable with those steps (stern discussion with ones self, treats every one minute, remainder when done), then hey who's complaining? Then your only goal is to make it independent and fade  your part in it. But you don't give a rip if he eats a bowl of candy to get through an outline, mercy.

I certainly would not complain.

Those are all the types of ideas that myself and my mom and all DS's therapists over the years and the ADHD videos and the procrastination books and study skills videos and everything else have been encouraging all along.

I've listed and posted those ideas, written them on cards in a grab jar so he could just be "told" which one to try instead of being overwhelmed by a list, pleaded with him to try them, yelled at him to try them, incentivized him to try them, etc. He is incredibly resistant.

The one week, me eating the candy pushed him into writing the outline. The following week he made his own plan to get it done incentivized by chess...but then again he couldn't get himself started. But according to his plan, he wanted me to remind him at snack time, so that is exactly what I did. And he then spent the rest of the morning not getting it done. After lunch I reminded him again that his plan was to finish it that day...that it had taken him less than 3 minutes the week before once he got going. I offered to pull out the candy for him again...and he ate the candy and got absolutely nothing done.

We both went to bed in tear that night knowing an entire day had been consumed by that one, stupid, yet also incredibly important 3 minute task...and that the next would be the same...and the next and the next with other simple yet impossible tasks as far as the eye could see.

On one hand, I would hate to put him in public school because I don't think it would meet his academic, social or executive function needs well. He is only diagnosed ASD1, and my research into locals schools makes it doubtful he would even qualify for an IEP. On the other hand, he is one of four kiddos, and realistically only the third neediest - Elliot requires 50+% of my attention and Audrey, due to age, still requires 25% of my attention (though that number is dropping quickly) - Peter uses up pretty much everything that is left (and needs more than that) and Spencer gets the dregs...I feel like there are days when I barely interact with Spencer at all because he has been the least squeaky wheel. 😞 

I honestly don't see how schools would offer him more scaffolding and help than I do...he would still have homework to do, and some of it would still be stuff he didn't like or was overwhelming. But if he just freezes and doesn't do it, there will just be a bad grade, not someone holding his hand to get him through it the next day.

On a third hand, Peter REALLY doesn't want to go to public school. But when I tell him that means he has to try to work with me and take my suggestions, he still can't do it. I have honestly told him that opting out of education is not an option, but that there is only so much time and effort I can devote to holding his hand through every task every day. And that is truly how I feel, and I am willing to send him to school, but I have almost no hope that it would actually help at all...and in fact I think it would make the whole situation worse.

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21 minutes ago, Terabith said:

Is he on an anti-depressant?  Is it possible the complete lack of motivation is partially a result of depression and/ or anxiety?  

Yes, has been since he was 5 years old.

I sometimes worry that the dose needs to increase, and I'm going to ask at his next med check, but he has never been motivated - not before medications, not shortly thereafter when the medications tremendously helped with his severe, paralyzing anxiety about life, and not now.

Currently the signs of obvious anxiety I see are:
- mild social anxiety (he throws up before almost all holiday gatherings, trips, etc but then bounces back and copes well during the event),
- a complete refusal to watch any "suspenseful" TV and movies (he has never watched a movie and can only tolerate shows aimed at much younger kids),
- moderate medical anxiety (his blood pressure is through the roof even just going for a harmless, 15 minute med check at the psychiatrist),
- and a tendency toward insomnia that is largely mitigated by medications and uber-consistent routines.

Maybe my perspective is skewed because this is so, so, so much better than it was. It was really heartbreakingly horrible when he was a preschooler.

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1 minute ago, wendyroo said:

Yes, has been since he was 5 years old.

I sometimes worry that the dose needs to increase, and I'm going to ask at his next med check, but he has never been motivated - not before medications, not shortly thereafter when the medications tremendously helped with his severe, paralyzing anxiety about life, and not now.

Currently the signs of obvious anxiety I see are:
- mild social anxiety (he throws up before almost all holiday gatherings, trips, etc but then bounces back and copes well during the event),
- a complete refusal to watch any "suspenseful" TV and movies (he has never watched a movie and can only tolerate shows aimed at much younger kids),
- moderate medical anxiety (his blood pressure is through the roof even just going for a harmless, 15 minute med check at the psychiatrist),
- and a tendency toward insomnia that is largely mitigated by medications and uber-consistent routines.

Maybe my perspective is skewed because this is so, so, so much better than it was. It was really heartbreakingly horrible when he was a preschooler.

Catherine's anxiety was heartbreakingly horrible when she was a preschooler.  It was really bad.  I have a hard time explaining to people what it was like and how all consuming her anxiety was.  

That said....this does not sound like a kid whose anxiety is under control.  I completely get how that can be much, much better than it was but still not be adequately medicated.  I would seriously consider upping the dose and/ or adding additional agents.  Cat also started medication just after she turned five for anxiety, and it was majorly life changing, but there have been a few times when we realized that things weren't as good as they could be.  

In a first time ever, in December SHE spontaneously said, "I think I need my meds adjusted because I'm having enough break through anxiety that it's really distressing."  She even SPOKE TO THE DOCTOR about it (which.....shocked me).  Both the realization and the self advocacy shocked me to my core.  (Then the doctor said, "No, that dose - which is objectively a low dose and which her sibling who weighs 70 lbs less is on twice the dosage of - is already too high.  I won't up it."  Which....grrrr.  I'm so frustrated with the pediatrician, but he did agree to increase her dosage of buspar instead, which has mostly gotten the job done.)  

So, what would happen if *Elliot* went to school?  Would that take him out of direct power struggles with you guys and give the other kids some breathing space and more attention?  

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55 minutes ago, wendyroo said:

I certainly would not complain.

Those are all the types of ideas that myself and my mom and all DS's therapists over the years and the ADHD videos and the procrastination books and study skills videos and everything else have been encouraging all along.

I've listed and posted those ideas, written them on cards in a grab jar so he could just be "told" which one to try instead of being overwhelmed by a list, pleaded with him to try them, yelled at him to try them, incentivized him to try them, etc. He is incredibly resistant.

The one week, me eating the candy pushed him into writing the outline. The following week he made his own plan to get it done incentivized by chess...but then again he couldn't get himself started. But according to his plan, he wanted me to remind him at snack time, so that is exactly what I did. And he then spent the rest of the morning not getting it done. After lunch I reminded him again that his plan was to finish it that day...that it had taken him less than 3 minutes the week before once he got going. I offered to pull out the candy for him again...and he ate the candy and got absolutely nothing done.

We both went to bed in tear that night knowing an entire day had been consumed by that one, stupid, yet also incredibly important 3 minute task...and that the next would be the same...and the next and the next with other simple yet impossible tasks as far as the eye could see.

On one hand, I would hate to put him in public school because I don't think it would meet his academic, social or executive function needs well. He is only diagnosed ASD1, and my research into locals schools makes it doubtful he would even qualify for an IEP. On the other hand, he is one of four kiddos, and realistically only the third neediest - Elliot requires 50+% of my attention and Audrey, due to age, still requires 25% of my attention (though that number is dropping quickly) - Peter uses up pretty much everything that is left (and needs more than that) and Spencer gets the dregs...I feel like there are days when I barely interact with Spencer at all because he has been the least squeaky wheel. 😞 

I honestly don't see how schools would offer him more scaffolding and help than I do...he would still have homework to do, and some of it would still be stuff he didn't like or was overwhelming. But if he just freezes and doesn't do it, there will just be a bad grade, not someone holding his hand to get him through it the next day.

On a third hand, Peter REALLY doesn't want to go to public school. But when I tell him that means he has to try to work with me and take my suggestions, he still can't do it. I have honestly told him that opting out of education is not an option, but that there is only so much time and effort I can devote to holding his hand through every task every day. And that is truly how I feel, and I am willing to send him to school, but I have almost no hope that it would actually help at all...and in fact I think it would make the whole situation worse.

Maybe he needs another diagnosis.

If he were in a good school with supportive teachers there is a lot they could do to accommodate him with an IEP.

One of mine had an IEP with anxiety as the main qualifier. No homework was one of the accommodations we worked out for them, because homework caused constant stress.

If the school could accommodate him and his time at home could be time to relax and just be a kid it might be a needed break for both him and you. 

My other thought, since he does well with Spanish, is to turn over any academics to a tutor or class. Online or in person. He can't handle doing the work on his own, but maybe something where there is no homework or independent work.

I would not try to require output from a kid who was struggling so much with it.

I remember you've talked about him needing intellectual stimulation before but output isn't a necessary part of intellectual stimulation. A kid can grow up academically stimulated and academically successful without ever making a single outline.

Not wanting to do anything does sound like some form of depression.

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1 hour ago, wendyroo said:

I honestly don't see how schools would offer him more scaffolding and help than I do...he would still have homework to do, and some of it would still be stuff he didn't like or was overwhelming. But if he just freezes and doesn't do it, there will just be a bad grade, not someone holding his hand to get him through it the next day.

I doubt they'd offer him more scaffolding and help (frankly, that seems impossible, since you do SO MUCH), but is it at all possible he'd work better for someone he doesn't feel resistant towards? Because I know that with my own kids, the power struggles are something that we've recently had to sort out, and even with my relatively neurotypical (although stubborn and gifted) kids, they ate up a tremendous amount of their emotional energy and reserves that could have been put to better use. Figuring out how to have structure without having power struggles and resistant behavior has been a real project for us this year. Is it possible that's part of what's going on? 

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2 hours ago, Terabith said:

So, what would happen if *Elliot* went to school?  Would that take him out of direct power struggles with you guys and give the other kids some breathing space and more attention?  

That would be a glorious thing, but I couldn't get Elliot to school even if I tried. Right now he is having violent, destructive, aggressive tantrums more or less every day...many of them during ABA. His entire team agrees that Elliot would probably love school for about a week, until he realized that they do math and writing there too, and there are more rules, and he doesn't get play breaks (with a build in ABA playmate) between subjects, etc.

Experience tells us that as soon as he was moderately comfortable in the environment that he would start throwing tantrums. This is what happened in gym and art and Spanish classes...all incredibly low-expectation, low-stress, completely voluntary small group classes with high teacher to student ratios. The general consensus is that it would be far worse in public school.

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3 hours ago, wendyroo said:

I sometimes worry that the dose needs to increase

Is he maxed out on his current med? Why do you worry? I guess I'm missing why you don't just do it. Now if it were benzos, I could see why. But if he tolerates SSRIs, seems logical to just do it.

I agree with the others that you seem to have a list that is going back to chemistry. Like I said, for my ds some of that (the crying, the lack of purposeful play) was chemistry. If you wanted to have a different, complementary direction rather than upping the meds, you could look for a psychiatrist or doctor on the Walsh site, somebody who might look at genetics and see what they could find. Like for me personally, I had an NBPF3 defect that directly affects B6 levels and results in anxiety, a propensity to dehydration, unusual amounts of urination, etc. I started the treatment and I'm off my anxiety med. Not saying his would be that simple, but I'm suggesting even one or two small pieces like that might help bring it back into control if you're looking for alternatives. Also the insomnia plus anxiety screams a TPH2 defect, easily treatable with 5HTP, which ups serotonin and eventually melatonin, helping both the mood/anxiety and the sleep. I never got tired till I started taking 5HTP for my TPH2 defect. I would just be up all night and forget to go to sleep. No amount of strategies and self talk solves a chemistry problem. Methylation cycle defects like MTHFR are also pretty common and could be adding to his mood and anxiety challenges. If you're wanting something else because you're hesitant about more meds, these could be directions to look.

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But I wonder if you've done this too well?  I'm wondering if Peter has never been left to his devices enough to get sufficiently bored or to feel like he had to find something to do or to self initiate, because there was always a schedule and a plan that he just sort of fell into?  And he's 11, almost 12, right?  That's naturally an age when kids are pruning.  They're getting bored.  They're spacey.  They're pruning interests.  And if Peter's starting from literally never having self initiated anything, never decided "I'm going to build x with legos," or "I'm going to cook y," or "I'm going to make a chain of paperclips that is 12 feet long," well, this is just going to be a really difficult time for him.  His weaknesses are intersecting with what is developmentally normal, and that's just really brutal.  

On average, Peter has about 5 hours of free time a day. Obviously this gets cut into if he spends 3 hours refusing to spend 3 minutes writing an outline. Or if he lies his way through school time and then has to spend the afternoon doing all the work he lied about that morning. But in general he only has about 3 hour of school each weekday...and then we add in copious amounts of break and transition time, and two meals, and board game time with Elliot and ABA, and 20 minutes of a chore, and he is hypothetically done with his responsibilities by 12:30.

He never does anything with his afternoons other than shuffle legos around, be bored, and hope that I inexplicably change my mind and let him have more screen time that normal.

He does do a couple hours of school on Saturday mornings. This is partly because ABA comes six mornings a week, so Saturday mornings have to have almost as much structure as weekdays. Also, when Peter started sixth grade, I offered him the choice of five longer days or six shorter days...he doesn't like free time and finds it boring and frustrating, so I was surprised that he chose to do some school on Saturdays. 

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But I wonder what would happen if you did an experiment and dropped your expectations drastically?  Like, what would happen if instead of doing math six days a week, you did math four days a week?  What if writing was done only two or three times a week?  What would happen if you cut your academic expectations in half?

This is largely what we have done for sixth grade...it is not going well. He is only doing math 2-3 days a week (45-60 minutes per session). He has one short writing assignment each week...which if you tally the minutes he actually spends working on it only takes him about an hour. He does a lot of high level work, but realistically he spends 15 minutes doing SAT prep a week, two 20 minute sessions doing Spanish grammar or literature, two 20 minute sessions working through The Thinking toolbox, etc.

At the beginning of the year, he and I agreed that I would drastically cut academics (I estimate I assign 1-2 hours of work a day) and he would spend the rest of "school time" doing computer programming, Snap circuits, music, art, watching Spanish cartoons, pretty much any semi-educational, non-video-game, productive/interactive/engaged activity. That was 9 months ago. What has actually happened is that he lies, delays, avoids and lollygags to stretch that 1-2 hours of work out to fill the morning...and often into the afternoon and evening and weekend. He has spent no time on any of the activities that we brainstormed at the beginning of the year, no matter how much or how little I scaffold them.

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I don't know if that would be realistic in your family.  Maybe it wouldn't.  But....the world doesn't end if the beds aren't made, if the sheets aren't changed weekly, if the teeth aren't brushed twice a day, if showers aren't daily, if everything isn't picked up.  I just wonder what would happen, if he didn't feel the weight of demands and expectations and had some room to self initiate, some time to get bored, and if he wasn't feeling like he was boxed in a corner of rewards and punishments and demands?  

I get why for some people a lot of these expectations are not important. But they are not things I can let go of. Living in this house, surrounded by mentally ill children, is honestly hell for me. It has just been 12 years of destruction, feces smeared across carpets, endless incessant screaming, being hit and kicked and scratched and bit and shoved down stairs, having toys and food and books and clothes dumped and flung everywhere, day-long completely illogical tantrums, not being able to go anywhere for safety reasons, having four children constantly, literally bouncing off the walls and destroying the house as they go.

I am hanging on by a thread most days, and the only thing keeping me functional is having some semblance of order. I don't need beds made (half of my kids can't even safely have a bed frame), I don't insist on clean bedrooms, the kids have a Lego room which they choose to keep in utter filth - fine with me, they have the entire basement as a playroom that they only rarely have to clean up (with help, and even that is just dumping into big bins), two of my kids keep their clean clothes in piles on their floor - fine with me. I honestly do try to give them domains where they have lots of freedom.

OTOH, I have found hygiene and basic self-care to be areas I cannot let them have freedom. They are so prone to dis-regulation, and I have found it gets far worse if I let them slouch about stinky, greasy and undressed. I think there is a reason that both inpatient mental health hospitals Elliot stayed at required showering, tooth brushing and changing from pajamas into clothes. And I cannot find even a shred of guilt over "forcing" them to once a week peel their sweaty, stinky, boogery, bloody sheets off their beds and put them in the washer...where I wash them, dry them, and put them back on the beds. Even if that is an unnecessary, unreasonable demand, I am willing to live with that. 😉

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2 hours ago, Not_a_Number said:

I doubt they'd offer him more scaffolding and help (frankly, that seems impossible, since you do SO MUCH), but is it at all possible he'd work better for someone he doesn't feel resistant towards? Because I know that with my own kids, the power struggles are something that we've recently had to sort out, and even with my relatively neurotypical (although stubborn and gifted) kids, they ate up a tremendous amount of their emotional energy and reserves that could have been put to better use. Figuring out how to have structure without having power struggles and resistant behavior has been a real project for us this year. Is it possible that's part of what's going on? 

Actually, the outline he had to write was for his only outsourced class. So, yes, he was resisting my scaffolding, but it wasn't my assignment to start with.

And the only reasons I am scaffolding an outsourced class at all are because 1) he asked me to provide the same scaffolding for him that he saw me providing for his younger brothers...he seemed to think that would be the magic bullet that would make the assignment not seem like work, and I think the scaffolding would make it much easier for him, but only if he were to actually try it and 2) when he got too frustrated being allowed to refuse my help and handle the assignments on his own terms, he started turning in documents filled with curse words...which obviously did not go over well, so he lost the privilege of handling the class independently.

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I kind of get a few minutes' worth of work turning into hours. Washing the breakfast dishes regularly became a whole-day job for me as a kid because I would stand at the sink not washing the dishes for hours. If breakfast dishes weren't done by lunch my mom would give me the lunch dishes to wash too.

She tells the story of one day being so frustrated she offered me a dollar to get the dishes done. Then two dollars. Then three. Finally she offered me a popsicle and that was the incentive that worked that day.

FWIW I don't think I ever learned anything at all from consequences or being made to do stuff. Not in terms of better regulating my behavior.

I think your kid is more complicated, but some of these behaviors do sound familiar.

Does he read for pleasure at all? Watch videos for pleasure? Listen to audiobooks? 

Pushing legos around aimlessly is certainly not normal play for a child.

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54 minutes ago, PeterPan said:

Is he maxed out on his current med?

Yes, Peter is on fairly high doses of two anxiety meds. I don't think the doctor will let us go any higher, and Peter does not respond well to most medications. 

We are still reeling over just having to change Elliot's anti-anxiety med. A month titrating off the old one, a month titrating on the new one, a month to see any efficacy, then up the dose and wait another month. The fallout has been physically and emotionally brutal on all of us.

I dread being told at Peter's med check next month that our only hope of better control is completely upending what is currently offering him any stability and throwing ourselves into months of traumatic upheaval with only a slim possibility that the situation will be better on the other side.

Ironically, the change we just made for Elliot was to move him back to the SSRI that Peter and Spencer are on because none of the other options (and we tried many over the course of 18 months) offered as good of anxiety control. More and more, it seems that chemically the three boys are peas in a pod. After many trials, the only ADHD med that works for any of them is Focalin, and none of them can tolerate the extended release. Prozac is the best SSRI for them, but they need high doses.

Right now, both Peter and Elliot's doctors are just unsure how or if we can achieve better control of any of their conditions. The SSRI makes a huge difference...just not enough to prevent break through anxiety. The Focalin makes a huge difference...but we have long gone over the max dosage and their symptoms are never fully controlled. Elliot's Risperdal helps A LOT, he could not live in this house without it, but it doesn't help enough that he could attend a gym class...even one with extremely understanding teachers, no firm expectations, and me acting as his one-on-one aid. Peter used to also be on Risperdal, and it helped somewhat back then when he was also very violent, but he matured out of that, and we dropped the Risperdal. I do wonder if it would be worth trying to add it back in...mostly just because I don't know what else to try.

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1 hour ago, wendyroo said:

That would be a glorious thing, but I couldn't get Elliot to school even if I tried. Right now he is having violent, destructive, aggressive tantrums more or less every day...many of them during ABA. His entire team agrees that Elliot would probably love school for about a week, until he realized that they do math and writing there too, and there are more rules, and he doesn't get play breaks (with a build in ABA playmate) between subjects, etc.

Experience tells us that as soon as he was moderately comfortable in the environment that he would start throwing tantrums. This is what happened in gym and art and Spanish classes...all incredibly low-expectation, low-stress, completely voluntary small group classes with high teacher to student ratios. The general consensus is that it would be far worse in public school.

This sounds really rough, I don’t have parenting experience to offer here, my own 2E kid was really different, but I’ve been the teacher who probably would have ended up with Elliott in her class.

I think you are probably right that they would see the same things at school that you see, and that it might be “worse” if you describe worse in the way ABA does as frequency of tantrums, or quantity of demands that are met.   My guess is that he’d be moved into some kind of SED/therapeutic placement if they didn’t start him there, and those settings have definite pros and cons, and probably wouldn’t challenge him academically. 

But even if all that is true, I think there is enormous benefit to kids and parents and family systems from having a break.  Even if a kid is still biting or throwing chairs or whatever, the fact that for those hours you and Spencer and Audrey wouldn’t be the ones getting bitten or thrown at or whatever has huge value.  It might lessen this:

 

57 minutes ago, wendyroo said:

 Living in this house, surrounded by mentally ill children, is honestly hell for me. It has just been 12 years of destruction, feces smeared across carpets, endless incessant screaming, being hit and kicked and scratched and bit and shoved down stairs, having toys and food and books and clothes dumped and flung everywhere, day-long completely illogical tantrums, not being able to go anywhere for safety reasons, having four children constantly, literally bouncing off the walls and destroying the house as they go.

I am hanging on by a thread most days, . . .

 

You are one of the most amazing problem solvers I’ve ever seen.  I am in awe of your parenting, but the reality is that when anyone is under that much stress, then problem solving is harder.  We’ve got a fair amount of stress here and I know my problem solving is terrible right now. 

So, even if school didn’t lead to improvements for Elliott, even if the graphs stayed exactly the same and the issues just transferred to a new location, it might help you feel better and problem solve a little better and let you be more ready for him when he walks in the door at the end of the day.

It might be more than that.  I’ve seen a lot of growth from similar kids in my classroom, but even if it wasn’t it might be worth it. 

 

I am sorry things are so hard.  I wish I could come over and help.

 

 

 

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13 minutes ago, maize said:

Does he read for pleasure at all? Watch videos for pleasure? Listen to audiobooks? 

He likes to read. Mostly DK Encyclopedias and Ripley's Believe it or Not type books. Never literature voluntarily. Never books without large pictures on every page. He will read Murderous Maths, 27 Story Treehouse, Garfield comics. It is almost entirely twaddle, but I have no major issues.

He won't listen to audiobooks for pleasure. He does sometimes choose to listen to audiobooks for his literature "reading". He certainly does not "get into" them...he sets the timer for the required 20 minutes, and when it goes off he turns off the player, mid-sentence, mid-word, he doesn't care.

He has never in his life willing watched a movie. Just "for practice" I do occasionally shows 5-10 carefully selected minutes from iconic movies so that he has a chance of knowing what his peers are talking about. He shows no interest in them, but as long as I don't show anything "scary" (the bar is incredibly low, there are scenes in preschool movies that are too scary), he doesn't object to sitting through them.

He does like playing chess sometimes...mostly against himself or a computer opponent. He will occasionally play against his Spanish tutor (who always loses). I force him to participate in a weekly chess club on Outschool, and he does well and doesn't strongly object (and that is about the best I can hope for with him), but he would drop it if I let him.

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5 minutes ago, BaseballandHockey said:

This sounds really rough, I don’t have parenting experience to offer here, my own 2E kid was really different, but I’ve been the teacher who probably would have ended up with Elliott in her class.

I think you are probably right that they would see the same things at school that you see, and that it might be “worse” if you describe worse in the way ABA does as frequency of tantrums, or quantity of demands that are met.   My guess is that he’d be moved into some kind of SED/therapeutic placement if they didn’t start him there, and those settings have definite pros and cons, and probably wouldn’t challenge him academically. 

But even if all that is true, I think there is enormous benefit to kids and parents and family systems from having a break.  Even if a kid is still biting or throwing chairs or whatever, the fact that for those hours you and Spencer and Audrey wouldn’t be the ones getting bitten or thrown at or whatever has huge value. 

If we could achieve that, I would do it in a heartbeat...but that is not the scenario I've been led to expect.

We have a wraparound coordinator who works closely with many SED kids of all ages mostly in public school. She said that a placement like that takes years of "failing" in a mainstream classroom with slowly increasing support. She said that in her experience, the first year is spent calling the parent to come pick up the child every time he acts violently or destructively. (How am I then supposed to get him home safely? I would have to have the other kids in the back of the van with him.) They also lower the stress in the classroom (for the safety of the other students) by not requiring any work be done (not even requiring that the child stay in the classroom), and then send each day's work home as homework.

She also told me that if I take a tantrumming, school-refusing child to school, that the teachers have no way of actually keeping him there, and that many of her families resort to getting the child as close to the door as they can, watching them run away and then calling the police to report them for truancy.

This all matches very closely to my uncle's experiences as a fifth grade teacher in this state. Twice he has had a child in his room for an entire year that destroyed property, threw chairs at other students, ran away, etc...in both cases all he could do was record a paper trail and keep escalating his concerns. In neither case did the child get any increased support during the entire year. 

This also matches with horror stories I hear from local homeschoolers with special needs kids who used to be in public school. If they can even find an appropriate placement, it takes years for kids to qualify. Our ISD is fairly affluent, most "good" schools with state of the art smart boards and libraries and school gardens. Kids who don't fit tidily into that picture have limited options. Our ISD has well over 100,000 students...and one center with 4 classrooms serving K-8 students with "emotional impairments and persistent behavioral concerns". And it says right on their site that one of their main goals is to stabilize students so they can transition back to their local schools. 

I wish, I wish, I wish, but my gut, and all the professionals with more experience, tell me that public school will probably make a bad situation worse.

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