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Privacy vs. Support for older teens


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Please don't quote.

When do you step back and let teens choose not to disclose their disability, if that is their choice? For context, ASD, anxiety, and mood disorder are the primary diagnoses, and teen is currently 16.

She can fly under the radar fairly effectively, though a teacher in an extracurricular activity where she did not disclose used a bunch of synonyms for 'flat affect' and 'not conversational ' when describing her. He chalked it up to her being a teen, but another teacher (in a class she's currently failing) is puzzled about her lack of class participation and asking for help in reaching her. Other teachers may not take the trouble to ask. And, in some classes, she's doing fine and getting really positive comments.

She does have an IEP, which she resents. It's possible that the teacher who is asking questions didn't notice the IEP, since support levels have been reduced due to everything being virtual this year. I have brought it to the teacher's attention, but I'm trying to figure out how much detail about dd's issues is appropriate to give *when I know she would prefer to share nothing.* There are absolutely issues contributing to her situation in class.

Another possible context for needing to share would be in a workplace: she'll have some opportunities for work and/or internships soon. It won't  be that long before she needs employment, since she doesn't intend to go to college. I think she'll fare much better if her employer has an understanding of what's going on.

I think she's getting old enough that I shouldn't be talking behind her back, but she will not consent to me sharing. How long do you say "She's not an adult, and the teacher needs to know this"? When do you let her make that decision?

She isn't open to discussing this with me, either. She snarls when autism is mentioned, and says if she had had any choice, she wouldn't have allowed us to saddle her with a diagnosis. She resents the whole thing furiously. (Eta: the diagnosis was unquestionably needed and her ability to function has been significantly improved by therapy.)

Thoughts?

Again, please don't quote.

Edited by Innisfree
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At this point, the IEP team should be working on transition planning, and all of this would fall in part into that transition plan. I know COVID has snarled everything, but that's what I'd focus on. You also may want to contact vocational rehab (whatever it is called in your state) and see if they can be pulled into the loop, since she is not planning to go to college. They can help with things like finding summer jobs and job coaching/training while still in high school. DRS (in VA) provided support for me starting at about that age, and while I'd like to think that I could have done it alone, I can't deny that having those hands on experiences with people who KNEW my limitations and were working with me where they were concerned made a big difference in knowing what to ask for when I actually was flying solo. It also may be the that VR process will appeal to her more since it is much more focused on abilities vs disabilities, and since the focus is independent living and adult life. Hopefully, you can get the ball rolling, but after that, they can mostly talk to and work with HER directly. 

 

 

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Another thing I'd ask is whether she knows how to self-advocate effectively, and when and where to do so.  If not, the plan needs to include assistance in learning these things, because that is ultimately how she will get through life without other people talking about her diagnosis behind her back.

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51 minutes ago, Dmmetler said:

Hopefully, you can get the ball rolling, but after that, they can mostly talk to and work with HER directly. 

 

One of my fears is that as soon as she is legally able, she will "fire" any help we have obtained. For example, she's on a waiver waiting list, which will qualify her for support in finding and maintaining employment even if (as likely) she never gets a waiver. But as soon as she's eighteen, she can refuse to renew her position on the list, and refuse that assistance.

She wants to deny to herself and the world that she needs help. Nevertheless, she needs it.

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11 minutes ago, ieta_cassiopeia said:

Another thing I'd ask is whether she knows how to self-advocate effectively, and when and where to do so.  If not, the plan needs to include assistance in learning these things, because that is ultimately how she will get through life without other people talking about her diagnosis behind her back.

Not even close to self-advocating. We're currently putting out academic fires that have spread because she won't ask for help, and won't even answer the teachers who have tried to contact her.

She will sometimes email a teacher, but not if she's significantly stressed by the class.

Last semester her grades were better than they've ever really been, but suddenly there have been midterms and projects coming due which are bringing to light how far behind she actually is. So, she's stressed. 

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At 16 I would still advocate for her if it's making a significant difference in her success. I wouldn't necessarily do it if it were the difference between an A and a B, but would if the grade was lower,probably.  It helps the teachers as well to understand what is going on. 

It is possible, when she is 18,she will remove the "help" and see what happens.  What you can do now is show her how she can succeed with help. ASD and anxiety produce the rigidity that she is struggling with--she probably sees it as "bad" to have a diagnosis and need help.  Keep showing her how we all need help and struggle--help her see the gray.

This is not easy.  Teens are not easy.

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What I would do, then, is make sure she knows what is available and has the documentation needed. If she knows Vocational Rehab exists, she can make an appointment and go back to them later if she has need then. Same with SSDI (although if you can possibly get her to keep her position for a Medicaid waiver, she should-those a long process). If she has the paperwork for a 504 plan for her desired job,then she can use it if she needs it. 

 

She may need to try to do it alone and fail to recognize she needs help. But, at least you can help her know what is available. 

 

Another thought is that you might want to contact the office of protection and advocacy-these are block grant legal services programs for those with disabilities. My brother (who is on spectrum himself) is an attorney for one. They may be able to help you figure out what legally you can do to protect her now. And, again, if she knows the office exists, she might be in a better place to keep them in mind if she needs them later. 

 

 

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So, to clarify: is the general consensus that it's okay to share with teachers, even without her knowledge, if she's in danger of failing classes...

with the caveat that we keep trying to have these conversations with her about getting help when she needs it, and talking about support options in general?

 

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17 minutes ago, Innisfree said:

So, to clarify: is the general consensus that it's okay to share with teachers, even without her knowledge, if she's in danger of failing classes...

with the caveat that we keep trying to have these conversations with her about getting help when she needs it, and talking about support options in general?

 

Yes. And if she finds out and gets upset talk to her about what being a minor means and that you are legally allowed to do it bc you legally are responsible for making sure she is educated and if she’s failing without the supports it is your job to step in at the point bc it means she is not being educated.  She’s not bad or wrong bc she needed you to do that. It’s bc she is so capable that you want to make sure she is properly educated. The teachers not knowing is effecting her being educated. 

I don’t know if making a connection to a Type 1 diabetic needing insulin to process carbs or not, but it’s something to think about. 

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4 hours ago, Innisfree said:

One of my fears is that as soon as she is legally able, she will "fire" any help we have obtained. For example, she's on a waiver waiting list, which will qualify her for support in finding and maintaining employment even if (as likely) she never gets a waiver. But as soon as she's eighteen, she can refuse to renew her position on the list, and refuse that assistance.

She wants to deny to herself and the world that she needs help. Nevertheless, she needs it.

I think that if this is a concern, and if you're in a position where firing the help would make it hard to get it back, then you need to consider letting her experience the consequences of not using her accommodations and supports in a setting where she can potentially do less damage.   Some kids need to learn the hard way.  

Now, part of that is understanding what the impact of both firing her support at 18, or of failing a class at 16 would be.  Is she planning on applying to colleges where a F would torpedo her chances?  Would summer school replace something you think is critical like a job where she'd develop work skills, or a family thing that's critical to her mental health?  

I teach kids who are much more academically impacted than it sounds like she is, but every year I have students who refuse to use accommodations on testing.  Most of my kids read far below grade level, and my modified tests are written on the assumption that they'll use accommodations such as read aloud, scribing, and help breaking down directions.  But every year some of them tell me "no thanks, I can do this on my own" and will turn in a test that yields a grade like 12%, and is only that high because if you guess A on every multiple choice question, you'll get a few right. 

If that kid is a freshmen, I sit them down, and show them their grade, and talk to them about how they made a lot of mistakes perhaps because they didn't use X or Y accommodations, and I'll offer them a chance to retake it, and then we'll put the two tests together and compare them and see if we can figure out why the second grade is so much higher, and then I'll back channel communicate to the parents to make a big fuss about the test with the good grade when it comes home.  For about 1/2 of the kids, that solves the problem and they stop. 

If the kid is a little older, and they've done it a few times, then I might put that 12% in the gradebook, and call the parents and ask them to sit the kid down and say "Wow, I just saw a 12% in the gradebook, you better email Ms. B & H and see how you can fix it, let's do that together" and then I let the kid retake, but maybe at lunch or after school when it stings a little to miss fun time.  Again, that works for some kids. 

But sometimes, if it's junior or senior year, and that kid is still refusing, I need to let them fail.  I need that 12% to stay.  They usually don't fail the class, because it's one grade, but it might mean a letter drop, because some kids just need to learn that way.  Usually in that situation, I'll still make them redo the test, I just call that "test corrections" and instead of changing the test grade, I'll give them a homework grade.  

I'm not really telling you what to do, because I do think it's much more complicated for kids for whom poor grades have outside consequences, but I just wanted to add another perspective.  

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2 hours ago, Innisfree said:

So, to clarify: is the general consensus that it's okay to share with teachers, even without her knowledge, if she's in danger of failing classes...

with the caveat that we keep trying to have these conversations with her about getting help when she needs it, and talking about support options in general?

 

I would probably reach out to her case manager and ask them to distribute the IEP again, or flag it, or draw attention to it.  I might also reconvene and IEP meeting and talk about whether different accommodations make sense.  But I'd let the case manager be the one sharing the diagnosis, and I'd keep my messaging to things like "well X is really hard for her.  We're working on it, but right now in the classroom she needs Y support." 

Is she exposed to strong role models of adults with disabilities involved in self advocacy or political advocacy?  Sometimes those voices can really help.

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6 hours ago, ieta_cassiopeia said:

Another thing I'd ask is whether she knows how to self-advocate effectively, and when and where to do so.  If not, the plan needs to include assistance in learning these things, because that is ultimately how she will get through life without other people talking about her diagnosis behind her back.

QFT

Re firing help--for a waiver, I would think the county would have resources for helping to prevent this. That's pretty serious. For the IEP, some schools make it really hard for kids to let go of the IEP. I don't know how, but our SN coordinator has said that they basically don't let kids cut their parents out of the loop under ordinary circumstances, but I know him to be super professional.

Resource (and maybe you can get this worked into her actual intervention): https://www.aapcautismbooks.com/products/the-integrated-self-advocacy-isar-curriculum-teacher-edition?variant=23029054275632&currency=USD&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&utm_campaign=gs-2019-07-11&utm_source=google&utm_medium=smart_campaign&gclid=Cj0KCQiAhP2BBhDdARIsAJEzXlFOgNGCoP_fEjCFF19o7RMXKl2Eaco5w-MosKrqapKedro1QuSg3H8aAl5MEALw_wcB 

This is the teacher guide, but there is student guide as well. The whole point of the curriculum is to be aware of self-advocacy needs and learn how to advocate for yourself.

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You've already gotten good advice on handling the school stuff, so I just wanted to ask whether she has any positive models in her life of people who embrace their spectrum and are cool with it or open about it? It may be the only impression she has is from school. Maybe look for a spectrum support group or a spectrum teen social skills group or something where she can hang with her peers (or older people on the spectrum who have figured themselves out). 

 

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  • 3 weeks later...
Posted (edited)

Coming back to this thread...

(Once again, please don't quote)

We have a new IEP meeting scheduled, after some chatting with dd's brand-new case manager at school. He sounds both eager to help, otoh, and young and inexperienced in our school system oto. 

Dd has pulled one grade up from failing to a low C, but she's still failing math. Her case manager wants to chat with her about her goals in preparation for the IEP meeting, and also to urge her to attend office hours so she can get extra help in math (dd's philosophy is that office hours are purely voluntary, so she won't go). But dd is refusing to speak with the case manager.

This is completely consistent with her attitude since forever, but I feel like banging my head on the nearest wall. Since everything is virtual, it's not like the CM can just walk down the hall, pull her out of class and escort her to his office. If I try to do the same thing here, I'll get a door slammed in my face and an earful of profanity (which she usually avoids, but can employ fluently). This is still far better than her response would have been a few years ago, but so very far from where she needs to be.

To address a good point which I see both @BaseballandHockey and @PeterPan made earlier, no, she doesn't have any good, positive role models of people with autism. [Removed details of less than positive examples] I have tried repeatedly to get dd involved in groups, but there's really not much available locally, and dd has strongly rejected what does exist. 

Editing to add that I have made books available over the years, from Different Like Me to books by Temple Grandin, but dd has refused to look at them.

--Please don't quote--

Edited by Innisfree
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Female role models who are cool with themselves, self advocate, and have figured things out. Maybe find a support group in the big city? 
 

Spectrum is very frank andctheyre going to talk with her differently. 
 

Also you’re letting things affect you. You need to disconnect and be dispassionate about her choices so she can’t weaponize them. 
 

Maybe be frank about where it’s going, what 18 (or 20 or whatever ) looks like and what you’ll do and the limits. She can see the choices, make the choices.

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Posted (edited)
12 hours ago, PeterPan said:

Teen social skills group would be GREAT.

Yes, they would. But if I couldn't convince or compel her to go at 12, I certainly can't at 16.

12 hours ago, PeterPan said:

Maybe be frank about where it’s going, what 18 (or 20 or whatever ) looks like and what you’ll do and the limits. She can see the choices, make the choices.

This is probably wise.

12 hours ago, PeterPan said:

Also you’re letting things affect you. You need to disconnect and be dispassionate about her choices so she can’t weaponize them. 

You are so right. 

 

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1 minute ago, PeterPan said:

Look up TRE. I’ve posted videos. 

I will, thanks.

Just now, PeterPan said:

How about social group online? My ds is doing that way, works great. Less stressful than going somewhere and no mask.

Great if the masks are the issue, but dd wears them happily. The issues are, first, identifying as having a disability or being identified as having a disability; and, second, associating with people who have disabilities. Because if you *really* don't want to be put in that bucket, you get sensitive to hanging out with others who are in the bucket.

Don't think I'm being dismissive. I don't know what I'd do without being able to bounce thing off you and others here. I really appreciate the suggestions. I'm calming down a bit. 😉

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Well I agree with her that it's pretty tacky to look at autism and say everyone with it should say they have a "disability." It's very Sneeches of the NT, frankly. It's a difference. It comes with some things that are harder. But autism is a *very wide* umbrella. It's probably more reasonable just to be honest about ones' self and what is working well and what isn't.

Is there anything she wants? And is there a skill gap that is keeping her from getting what she wants? It's usually easier to get someone motivated when it's for something they want.

I harp on this a lot, but Interoception is the key to a lot. If you're more self aware (and eventually others aware), a lot of this sorts out. It's very easy to be a (remove nice word) when you aren't aware of the feelings of others. But it starts by realizing your own.

https://www.kelly-mahler.com/what-is-interoception/  

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And I'm not trying to blow you off there. I'm just saying if you can't change some things, maybe change what can change. And interoception is a thing that can change and it can cascade into a lot of other changes.

This is the video I usually share. Worked for me. It's not your imagination that experiencing violence, threats, stress, etc. from your SN dc is causing you problems and that you might feel better if you could let the harmful effects go. TRE does that. Any time, every time my ds has significant behaviors, this is what I'm doing. 

 

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Can you remind us what her support level is? What has worked in the past? When did it stop working? 

I'm just thinking out loud with you. When I get stumped, that's the kind of backtracking I do. Sometimes kind people remind me, lol.

Ok, so I'm reviewing your original post. I just think that's so sticky, which is kind of why I was wondering what her support level is. My ds was diagnosed under DSM 5, which lumps everyone together under this WIDE UMBRELLA of autism. You realize how WIDE this is??? So if he goes into an autism school (which we do, because we do all kinds of therapies), you're going to see a WIDE variety of people. And frankly, a lot of them do NOT look like my ds, do not act like my ds, do not have the IQ of my ds. 

So I was very loathe, when we started this, to go up to him and say "you have autism". There's no way he's going to identify with that, kwim? And I can appreciate on a level why anyone wouldn't and wouldn't want to. But I also think it's very teen and cantancorous and negative also to completely deny anything is wrong and avoid ANY term. But I'm just saying it's very, very negative right now the way it's handled. You'll see people holding onto DSM4 terminology, because they don't want DSM5 labels applied to them. 

What I did with my ds is to allow some of the term to come by inference and to make gentle connections to things that are *similar* that he could acknowledge he does that they do also. Like I'd say when we were there you saw people doing xyz, do you do that? And not in a sort of build a case thing, because again I don't think it's important. I don't think the term is important. I think she could call herself "purple unicorn" and it would be fine. The real issue is to acknowledge what's weak and where she needs more skills. 

So I then circle back to the point about skills and motivation. Skills are useful when you have a reason for wanting them, a motivation. So instead of talking DSM label (which doesn't matter, she can be purple unicorn), instead talk skill deficits, how a skill would benefit her, and what the plan can be to get that skill. If the goal is the skill and the benefits of the skill, then that might be good enough for now. Unless you're saying she needs to stand up in front of a group like AA and say "My name is ____ and I'm an autistic" haha. Kwim? There are happy successful people with autism who do that and use terms that way and there are happy successful people with autism who DON'T do that. The problem is the DSM, not the person. The problem is the skill deficits, not the need to chant a mantra "My name is ____ and I can't because I have a disability." It should be "My name is ____ and I'm growing in my awareness of my deficits and taking personal responsibility to get better at things." That's it. The DSM is stupid and changeable. Purple unicorn is a much better label.

Edited by PeterPan
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I think I know the reason(s) or can guess, but can you flesh out *why* she resents having an IEP? My ds has had one for many years, probably as many as your dd, but he doesn't resent it. But I think it's the difference that he's not in the ps, perceiving himself as being treated differently or coddled or whatever. And it's sort of ironic if things they do to be helpful backfire like that. 

I think the workplace issue is a self-advocacy question. Just saying "I have autism" doesn't tell the employer what you NEED. That's going to be their next question, what you need. And that's back to the interoception and self awareness and self advocacy thing. 

I'm just tossing out ideas here. Maybe start with the TRE. When Mama feels better, everything goes better. 

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2 hours ago, PeterPan said:

Can you remind us what her support level is? What has worked in the past? When did it stop working? 

Diagnosed at support level 2, but more recently people have tended to say level 1. 

ABA worked-- broad umbrella ABA, with a young, cool BCBA she really connected with. It stopped working because it ended. Her behaviors improved to the point that funding ended.

I have tried to find someone else like that BCBA, without success, as a friend/mentor/tutor/any kind of companion. Finding someone else like that would be like finding buried treasure, but they need to have enough understanding to grasp the situation, and be in a position where she's willing to engage with them.

Right now, during Covid, she's not going to be willing to get together with anyone, and that's appropriate given family risk factors. I am hopeful that by summer everyone can be vaccinated. There are some avenues available to explore at that point.

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3 hours ago, PeterPan said:

I think I know the reason(s) or can guess, but can you flesh out *why* she resents having an IEP?

She says she doesn't need it. In some classes, that may be true, but in others it absolutely isn't. It's partly a question of what the subject matter is, but also one of what the teacher expects: group projects versus individual written work, for example.

Beyond "doesn't need it": her older sister didn't have an IEP. There's only two years age difference, and a lot of rivalry.

Also, I think she just sees it as demeaning. I need to remind her that she's 2E, maybe. She has some real strengths, and those are reason enough for an individualized educational plan.

PeterPan, this is helpful. Thank you.

I need to try to get some sleep, but I'll continue to mull over your ideas tomorrow.

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Can you hire that BCBA privately? Our state has a scholarship system for those who take their funds and withdraw from the ps. It enables them to continue access to behavioral services, etc. and have more flexibility.

My ds is that ASD2 that people want to say ASD1 because of the IQ. They look at the IQ and go oh he could get there, yet he requires significant support.

It's a shame the IEP goals are focused on making classwork happen instead of being focused on filling in skill holes and empowering her.

There's sort of a cycle to intervention. Ruth Aspy was giving it for social skills, but I think it's really applicable more broadly. 

1) teach the skill/goal explicitly

2) practice the skill in a context

3) review how they did at applying the skill in the context

If any of those pieces are missing, you don't get the same result. It's a very cognitive approach, something *especially* applicable to a 2E, higher IQ individual. 

So if step one isn't happening to some degree (skill deficit isn't being acknowledged by either party, explicit instruction is not happening, whatever), there you go. If they're doing the thinking for her or talking at her but her interoception is so poor that she doesn't even see why, well there you go. 

They tend to want a lot of step 2, but without steps 1 and 3, there will be less progress as you're leaving growth to inference and pattern making via cause/effect, the things that are significant disabilities in autism, lol.

When I started working on my interoception, my self advocacy changed. I began to realize how I was feeling in situations and being able to say I didn't want to feel that way. No one WANTS to feel bad or disorganized or out of sorts. It's just very hard to make a choice (about help, tools, strategies) when people are telling you what you feel instead of you knowing what you feel. 

So to me, when in doubt, work on interoception. Self awareness leading to better other awareness and self advocacy. Who knows what could happen. 

On the rivalry thing, why do they do that? I'm just asking out loud. Is this sister bio? It's illogical. But I agree, women are catty and crazy competitive. Does she have anything *else* she competes in? I've been reading Sax's book Boys Adrift and he talks about the need for competition. I don't think it's only boys. What about different, more healthy competition so she could form her picture of herself a different way? That's pretty sorry if the only way she views herself is in comparison to a sibling.

I'm suggesting that it takes a lot of social thinking to give a rip about what your sibling thinks, therefore it doesn't have to be competition with the sibling and is only showing a need for competition. 

Again, on the getting together with that BCBA (if you could make that happen privately) I would say tele. Why wait? Tele is GREAT for services like this. And maybe that BCBA is having a hard enough time booking clients with covid that she'd cut a deal. Or maybe she'd drop to a cash pay price (yes, this is a thing) or drop the price slightly because she's not having to commute to you. 

This is just thinking out loud, but what are things that work WELL for her right now, things where she doesn't require as much support or is more intuitive or skillful or motivated?

And is sleep going well? A lot goes better when sleep is going well. It's that nasty convergence of chemistry, interoception, anxiety, so many issues. Me, I'm always looking for what is lynch pin. So if someone is not sleeping well and is grouchy and working on interoception (to help them identify their body signals and problem solve) or chemistry can improve that, the gains there (chemistry, interoception, self regulation skills, anxiety, whatever), working on a smaller, less controversial thing, could carry over into other areas. 

Edited by PeterPan
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50 minutes ago, PeterPan said:

Can you hire that BCBA privately?

Nope, unfortunately not. I did try. She may have even moved by now, this was several years ago.

51 minutes ago, PeterPan said:

Our state has a scholarship system

Sadly, ours doesn't.

52 minutes ago, PeterPan said:

people want to say ASD1 because of the IQ. They look at the IQ and go oh he could get there, yet he requires significant support.

Yeah. You're right. Here, the IQ part is highly uneven. It really just depends on exactly what the task is. There are some very strong strengths and some very tough challenges.

54 minutes ago, PeterPan said:

It's a shame the IEP goals are focused on making classwork happen instead of being focused on filling in skill holes and empowering her.

This is a battle I fought without success when we got the IEP, and I'm preparing myself to fight again. In this school system, if kids are deemed to have the ability to do the academic work with support, their course load is purely academic. They can have art classes, say, but no therapy, unless maybe there were an obvious physical need for OT. The theory is that all those skills kinds of deficits should have been remedied before high school. So dd has been doing the required core classes, and padding with every art class offered, because at least that reduces the number of papers to write and so on. She has zero interest in art. 🙄 But that's what keeps the load light enough to manage.

But even though everyone in the IEP meeting nods their head when I point out that her success in life doesn't depend on algebra, but on self-advocacy and some degree of social skills-- they have nothing to offer. All kids able to do the academic work do only that. Only kids who need to be on the life skills track get any sort of skills remediation. And-- that group really isn't appropriate for dd, either. 

So this is probably another bit of why she doesn't want an IEP. She doesn't want to be identified with a group which truly doesn't match her at all, and she doesn't see that kids have IEPs because they're gifted. She's already in some of those classes. She's just struggling not to fail them because a lot of the basic skills are lacking. So she doesn't identify with those kids either.

Now, this is her 10th grade year. Next two years, there's an opportunity for some vocational training, only none of it fits her interests and abilities. But there is at least one opportunity for guided work experience. I am pushing hard to let her do that both 11th and 12th grades. I think it could be transformative, if it's handled well. But it's literally brand new this year, and didn't really happen this year because of Covid. So, her case manager is trying to find out more about it. At this point he doesn't know anything more than I do, and it's just a line on the website with no real information.

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1 hour ago, PeterPan said:

When I started working on my interoception, my self advocacy changed.

But you wanted to do that. Somehow I need to convince a teen, who doesn't want to hear any more labels or descriptions of deficits, that she wants this, if it's going to happen.

I suppose I could just try it myself, and see if she gets curious. I'm trying to think if there's any other way to approach it.

1 hour ago, PeterPan said:

What about different, more healthy competition so she could form her picture of herself a different way?

I think she does have some strong skills that she's aware her sister lacks. Once things open up a little more, this part is actually going to be happening.

1 hour ago, PeterPan said:

This is just thinking out loud, but what are things that work WELL for her right now, things where she doesn't require as much support or is more intuitive or skillful or motivated?

See just above. She does have an interest which she's developed strong skills in. I hope she'll be able to do more with it soon.

1 hour ago, PeterPan said:

And is sleep going well?

Hah. Abysmal. That's always been tricky, though. She prefers to be nocturnal. School interferes with that.

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I have a 15-year-old I think should have a 504 plan he does not want (for handwriting).

He frankly would rather do a little worse but do it "on his own" and just muddle through on things here and there.  

He is happy with the status quo.  

He is going to try two AP classes next year, and if his handwriting is a problem *for him* and *he thinks it is a problem* then I brought it up once (not saying 504 plan but saying would he be willing for me to talk to people at school) and he said yes at first but then he said no, wait and see.  

He says that this year, he does not write quickly enough in his science class to complete a notes thing, but his teacher just lets him turn it in after other kids and it is not a big deal.  Otherwise he is typing and it doesn't come up.  Last year and in middle school he had teachers who couldn't read his writing and would ask him to read what he had written.  But mostly he was able to type, and with his teachers fine with doing that it didn't rise to being a problem.

It is not how *I* think it should be or what *I* think is the best, but as it is not causing my son a problem to the point he wants to address it, I think it does need to be his choice, because he is the one who is going to have to deal with it.  And right now he is in a much more likely place to consider it, where before he has rejected it outright and it would have just been a fight.  

Anyway -- I think tie it into your daughter's goals, and if she would rather muddle through, she might have to muddle through until things get to a point where she says -- hey, muddling through is not working anymore.  If she has a goal of, say, graduating high school, and she is on track for that ----- that might be fine with her, and more confidence-building for her, than if she could do it better and easier but with help.  Or she might realize that she can't meet her goal and that might be what makes her think she should try some things out that she doesn't *want* to try out but might be what it takes to make things work out for her.

I think there are two things, a carrot and a stick.  I am totally in favor of the carrot -- all the exposure and positive talk and everything, I think all of that is great.  But then for her to want to do things that she does not want to do, well, I do think it can take a negative consequence.  And her idea of a negative consequence might be a lot lower than what you would want it to be.  That is what I feel like.  But it is her life and if she would rather have it be harder and experience more of a negative consequence, but it's worth it to do it on her own terms, that may just be how she is going to be.

I got advice from a previous resource teacher for my son, that he has a deep need to feel like he does things on his own terms, and he has already felt like he has to have extra help, and he does not like it -- and basically the teacher told me that if I "take over" for him, even if SHE would agree that it was to make things be a good way, but if I take over, it just kills his motivation and his feeling that he is doing things on his own.  And because he did next extra help when he was younger and have some rocky times, he is going to be sensitive to this, until he feels like he is in a place where on his own terms he will want to do things.  It is not going to be able to be on my terms of what I want, or the way I want things to be, even if that would really be better because I can see it would be better.  It doesn't work that way if it kills his motivation and makes him feel resentful.  

It's not where we are right now, because of coronavirus and his current age, but we have had consequences based on his grades.  He does care about his grades at this point, too.  But he used to not care or have an attitude about it, and we have had consequences based on his grades.  Such that -- he could have a chance to do it on his own, and then if that didn't work, he was going to lose some privileges and he could gain back privileges if he did some things we wanted him to do.  That could include self-advocacy type things like e-mailing a teacher.  We have done that. 

We have done things more or less where "if your grade goes below x or you have any missing work, then you lose x, but you can get it back if you contact your teacher and ask what you can do or contact your teacher about your missing work."  Then we can watch him write an e-mail.  I do think he is honest if we say "did you talk to your teacher?  what did your teacher say?"  

At this point he would hate for us to ever email one of his teachers, so if he refuses to talk to a teacher or email a teacher, and we think he should, then he will probably say "fine, I will send the email" or "fine, I will talk to the teacher" if we say we are going to email the teacher.  

But it used to be that he would say he would talk to the teacher and then forget to talk to the teacher.  At least emails work better in that we can watch him do it.  

I think it would also be fair to say that if she is passing everything and is going to graduate, then you are happy with how she is doing on her own.  It doesn't mean all the things she should be doing aren't needed.  But if she doesn't need a certain grade or knowledge, she just needs to graduate from high school, I think that would be something to consider.  

I also don't know if she would be motivated by you saying "if you can keep all Cs or above, we will let these things go, if you get to a D, we are going to insist you do x, y, z or have a consequence at home."  Because  that is the kind of thing we have done.  At this point he does want to go to college and so he does care about school.  I don't know if your daughter is just needing to graduate or if she really does have goals or there are likely goals for her that cause her grades and learning to be more meaningful.  It's just something to think about, I guess.  We do also have privileges for him that are based on various things, so there are positives, too, there is a carrot that he likes some privileges and then a stick that he doesn't want some consequences.  I think they do both matter for him, I think they work together for him.  

Because I do think, there are a lot of things we can directly provide as parents.  Those are so important.  But then there are some things that our kids have to step up for themselves, find some motivation, find something meaningful, etc.  And I do think sometimes that comes from a negative consequence of some kind, whether it is from a parent, from school, in the form of a grade (assuming they care about grades), not getting to do something for some reason, etc.  Sometimes I do think it takes having that happen.  I also think there needs to be enough positive that there is a feeling that "making it" is possible.  

Anyway -- I think it is okay if she has this "outside thing" that looks to be what she has going for her, really, and she just needs to get through high school.  

I think that what would happen as an ideal does not have to happen, and it's better if it doesn't happen if she does not have buy-in.  I think buy-in is so important.  And that is something that can just not be possible as a parent, because sometimes there are things kids just do not care about, and we can't care about it for them.  

But maybe there are some things, too, that could help with motivation towards buy-in.  If there is anything meaningful to her -- that would be the best thing.    

I don't know if her big thing is wanting to do things on her own, but definitely that has been something for my son.  And it is a good impulse, it is an impulse towards independence.  I think there is a way to look at it as being very positive that she wants to have agency, even if it means not doing things in the way we can see as adults would really be so desirable.  

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For this son, the worst he is going to do is act sullen and glare.  He is not going to scream for a long period of time.  He is definitely not going to act out in any extreme way.  He just is not.

I totally get flinching and having to mentally steel myself to expect something, to plan ahead, to think “what am I getting myself into.”  My younger son is much better now, and reading this thread has made me realize I do not worry as much about what he might do.

But I have definitely been there.  
 

I think if it’s likely or possible your daughter is going to have an extreme response if you are going to take something away or something, it is not worth it, it is not worth having an extreme response.

But she has gotten older and more mature — hopefully — not just larger — and she may be able to handle more as far as not liking something you do.  It really might be okay to increase your expectations some in some ways, and reasonable, and reasonable to expect her to handle it.  
 

I totally get a feeling of — well, it’s only screaming now, but it used to be a frenzy with attacking siblings.  It’s hard to believe it’s really only going to be screaming.  My younger son has not attacked a sibling in many years — I would say it has been 7 years.   Right now I do feel like — I don’t have to worry about that anymore.  But it takes a long time not to feel that way.

I think there are two different things.  One is, realistically, is it still likely that there could be an extreme response?  And then if no, there is just the leftover worry of an extreme response.  
 

If you realistically don’t think there is going to be an extreme response, does that mean stuff like — mean looks or glaring, sullenness, slamming a door, saying things like “you don’t get it” or “I hate you,” etc.  If that is realistically what might happen if there is a consequence or you do something she doesn’t like — these things are also stressful. They really are.  But they are not extreme and they might not last too long.  
 

If you are conditioned right now, that if she has a sad look on her face, you go to “oh no she is about to have an extreme response,” that is definitely just not going to lead to a good parenting situation.  You need to be able to tolerate a sad look without being afraid WW III is about to start.

I don’t think it is very easy.  Any help you can get I think is worthwhile.  
 

I think it’s important to look at the bright side — is your daughter attending all her classes now?  That is major progress.  Is she making an effort?  That is major progress.  There really do sound like there are real things to be positive about.

 

And it does sound like her behavior and how much she can handle have also really approved.  Maybe still be careful about it, but maybe she is enough better you can weather some reaction from her if you do decide there is going to be a consequence for something.  

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3 hours ago, Lecka said:

I think tie it into your daughter's goals, and if she would rather muddle through, she might have to muddle through until things get to a point where she says -- hey, muddling through is not working anymore.  If she has a goal of, say, graduating high school, and she is on track for that ----- that might be fine with her, and more confidence-building for her, than if she could do it better and easier but with help.  Or she might realize that she can't meet her goal and that might be what makes her think she should try some things out that she doesn't *want* to try out but might be what it takes to make things work out for her.

Lecka, thank you for all this post. This is all pertinent. You're right that she may need to do things on her own terms.

Regarding her goals: I'm not sure how important graduating high school even is to her. She is not interested in college at this point, so she's not trying to meet more than the basic high school requirements.

Honestly, I think her goal is to get done with school and move on. I think she is at risk of dropping out if we can't find a way for her to finish school which isn't too painful. But her plan, currently, is to finish high school.

About your second post: you're right that there has been major progress. Really, huge progress.

There's no good consequence I have available at the moment for bad choices. She must have internet access for school. Her sister also needs it for college work, so it can't even be turned off on a schedule. There's no activity which I can remove.

But I don't feel like I need to use consequences much, either. She's really a pretty good kid most of the time. I'm not sure I feel like trying to punish a 16yo for yelling at me.

And-- there's a valid argument to be made that if she doesn't want support, maybe she needs to see how life goes without it. I don't know. I feel like she could benefit from gaining more skills in some important areas, where that help could be available now if we can line it up, but won't be later. It especially won't be there if she cancels services in a couple of years. But maybe this is when she needs to learn how things go without support.

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I think at a certain point, she has to be willing at whatever age she is.  If she is not willing at a younger age, just because she is under 18 doesn’t make it magical that she will be willing at that age.  She could be willing or not at various ages.  
 

There is really no law saying she has to be someone who finds meaning in an autism diagnosis.  If she does — that is great.

But if she doesn’t, then that is her choice and her personality.  Not everybody is going to embrace it, and at a certain point I do think it’s worth encouraging it, but if she is just not interested, I think it’s enough if she knows it’s out there so she can look into it if she wants to at some point.  And maybe she won’t.  There are people who just don’t want to, and I don’t think it’s the end of the world.  
 

I do think the ideal is the ideal for a reason, but I do think it is also not something everyone is interested in, and I think it has to be okay.  There is more than one way to be a young autistic woman and there is really not only one best way that works for everyone.

 

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40 minutes ago, Lecka said:

I think at a certain point, she has to be willing at whatever age she is.  If she is not willing at a younger age, just because she is under 18 doesn’t make it magical that she will be willing at that age.  She could be willing or not at various ages.  
 

There is really no law saying she has to be someone who finds meaning in an autism diagnosis.  If she does — that is great.

But if she doesn’t, then that is her choice and her personality.  Not everybody is going to embrace it, and at a certain point I do think it’s worth encouraging it, but if she is just not interested, I think it’s enough if she knows it’s out there so she can look into it if she wants to at some point.  And maybe she won’t.  There are people who just don’t want to, and I don’t think it’s the end of the world.  
 

I do think the ideal is the ideal for a reason, but I do think it is also not something everyone is interested in, and I think it has to be okay.  There is more than one way to be a young autistic woman and there is really not only one best way that works for everyone.

 

Oh, absolutely. If she wants to disown the label, at some point she can, and maybe that will turn out to be now.

It's hard to watch. Getting her that diagnosis was very difficult. Having it led to the most significant personal development she's gone through. It has meant the difference between being able to function in society and being on a path that was leading to very concerning places. As her parent, I see all the progress and also everything left that still needs help. I see people in our family who would have been better off if they'd had help at a young age.

But every teen has plenty to learn still, and as you say, she knows how to find it if she wants it later.

Much to think about, thanks.

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The flipside is hanging with peers who are like her and open about their labels will give her freedom to use and identify with hers. Right now, she hasn't found that tribe. She probably will eventually, but she hasn't yet.

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14 hours ago, PeterPan said:

The flipside is hanging with peers who are like her and open about their labels will give her freedom to use and identify with hers. Right now, she hasn't found that tribe. She probably will eventually, but she hasn't yet.

If she can find that tribe on her own, she may be open to it. I hope she can and does, and I'm very happy to facilitate that any time she's interested. But if it's pushed on her, she's not going to accept it.

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So just totally off the wall, but if her special interest is say D&D (which I'm not saying I'm a fan of, just saying if), then there might be some covid-friendly ways to make connections even when they can't get together to do it. I've been really surprised to see these D&D spinoff videos on youtube. It's sort of like fan fiction meets youtube, where they make stories and act them out. Also there would be fan fiction, which she might be able to find contests for. 

 

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Just a couple of thoughts. My son is also a refuser. He turns down opportunities and some IEP accommdations and rails against things he does not want to do. There are some things that we let him know are not optional, and we work through the bad reactions. We've had some horrible conflicts over homework in the past. And when we last tried a social skills group, I got some hard to endure blowback, and because he didn't participate well, he didn't benefit.

I will say that we are in a better place now than we were a year ago. What changed? We started seeing a psychiatric nurse practitioner for medication management, and he is now taking a medication (Lexapro) that has made a dramatic difference in his compliance. Dramatic.

So my first suggestion is to think about whether you can get some additional medical help. I would not have thought to add another medication on, until it was suggested by the psychologist who conducted DS's autism evaluation. She said that sometimes adding a mood affecting medication can make it possible for the person to actually work on improving skills, and that has turned out to be true for DS. DS does not usually notice the ways that medication affects him, but he does notice how the Lexapro helps. Sometimes he will say that he will stop taking his ADHD meds as an adult (we have to work on this!) but that he wants to keep taking Lexapro.

He is still oppositional at times -- the meds are not a cure all -- but he is so much easier to deal with now. So much!

 

 

 

 

 

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https://www.amazon.com/Controlling-Difficult-Adolescent-Program-Economy/dp/0819178306/ref=sr_1_2?dchild=1&keywords=controlling+the+difficult+adolescent&qid=1616865319&sr=8-2

DS's therapist just recommended the system explained in this book to me this week, and I have not had time to get the book and read it for myself yet, but I'm going to share it here anyway, as something for you to look at, since you said you can't think of things that would be consequences for her. Not every idea will end up working for every family, and I'm not sure yet if this will be something that we will do here, but I think it can be worth looking into.

I'll also mention about the internet, that we have restricted DS's internet priviledges without restricting them for the whole household. This is possible to do. There are internet control systems that you can buy, but so far we have managed by putting controls on all devices that require passwords that only parents know. DS has a phone, but his internet and all apps are blocked on it. DH has enabled certain apps to be available all of the time, but very limited ones. And then for the rest of the apps, parents have to put in a code and allow usage for 15 minutes or an hour or all day.

DS has had to earn back internet privileges on a daily basis. Sometimes we have loosened the reigns to give him a chance, and then we have had to pull back in and restrict again, because he has made poor decisions or broken rules.

None of this impacts his siblings' use of the internet or their devices. Except that he will complain sometimes that things are different for him than for his siblings (this sounds mild but can be a big fit).

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Another thing we have done over the past year or so is setting up a way for DS to earn rewards by his compliance with schoolwork. I can write more about that, if you think it might help in your case. DS has gotten to choose his rewards. Sometimes (before the pandemic), he would choose to go out to eat at a favorite restaurant. Sometimes he would choose as his reward something that he wanted to buy on Amazon. Sometimes we would give small rewards along the way, when we knew it would take him a few weeks to earn a larger reward.

DS balked at the reward system at first, but we worked our way into it. First, he worked toward rewards merely by sitting down to do his homework, regardless of how well he did the work. Then when he accepted that he would do homework every day, we changed it so that he would earn the reward in different ways. I can go into more detail about this, if you would like.

Basically, DS HAD to be willing to accept help from parents, in order to pass a certain class (science), and he was horribly resistant (yelling, refusing to let us look at anything on his computer, refusing to go over the material with us, saying he wanted to drop out, berating us, etc.), and we had to find a way to help him with the classwork anyway.

It was horrible horrible.

And yet now, DS will arrive home from school and say, "Let's do the homework now and get it over with," and he will let me study with him. Not without some complaints, but it is oh, so much better than before. It was horrible before, with suggestions from the school that he needed to drop to the special needs science class (which DS did not want) and now it is just sometimes irritating to work with him, due to a little complaining.

A drastic, drastic difference. The Lexapro has made a giant difference in his ability to comply, and the systems that we put in place made a bigger difference than we expected with setting up a routine that he would accept and that works.

We also work pretty closely with his science teacher about how to make things better, and she has been awesome. (She is the intervention teacher who co-teachers his science class). Last year's science intervention teacher was very hard to work with, so not all teachers are equally helpful, I know.

So, your daughter refuses to do a virtual session with the case manager. We have been able to get DS to do virtual meetings, even when he does not want to. We are not above giving him either a consequence or a reward to get him to comply. At times, he has been extremely angry with us for making him do something, but we have still made him do it. However, he has not, for example, locked himself in his room and created a physical barrier to compliance -- he might storm around and have a fit, but if we say he must, he will sit in front of the computer screen for whatever meeting is necessary.

It's hard for me as a parent to bear the brunt of the hostility in order to get him to interact with the professionals. Really hard. I'm a really sensitive person who wants harmony and feels personally hurt by his hostility, so years of this have taken a deep personal toll on me. I'm sorry it's so hard at your house, too. I hope you can figure out a few things to help.

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1 hour ago, Storygirl said:

Another thing we have done over the past year or so is setting up a way for DS to earn rewards by his compliance with schoolwork. I can write more about that, if you think it might help in your case. DS has gotten to choose his rewards. Sometimes (before the pandemic), he would choose to go out to eat at a favorite restaurant. Sometimes he would choose as his reward something that he wanted to buy on Amazon. Sometimes we would give small rewards along the way, when we knew it would take him a few weeks to earn a larger reward.

DS balked at the reward system at first, but we worked our way into it. First, he worked toward rewards merely by sitting down to do his homework, regardless of how well he did the work. Then when he accepted that he would do homework every day, we changed it so that he would earn the reward in different ways. I can go into more detail about this, if you would like.

Basically, DS HAD to be willing to accept help from parents, in order to pass a certain class (science), and he was horribly resistant (yelling, refusing to let us look at anything on his computer, refusing to go over the material with us, saying he wanted to drop out, berating us, etc.), and we had to find a way to help him with the classwork anyway.

It was horrible horrible.

And yet now, DS will arrive home from school and say, "Let's do the homework now and get it over with," and he will let me study with him. Not without some complaints, but it is oh, so much better than before. It was horrible before, with suggestions from the school that he needed to drop to the special needs science class (which DS did not want) and now it is just sometimes irritating to work with him, due to a little complaining.

A drastic, drastic difference. The Lexapro has made a giant difference in his ability to comply, and the systems that we put in place made a bigger difference than we expected with setting up a routine that he would accept and that works.

We also work pretty closely with his science teacher about how to make things better, and she has been awesome. (She is the intervention teacher who co-teachers his science class). Last year's science intervention teacher was very hard to work with, so not all teachers are equally helpful, I know.

So, your daughter refuses to do a virtual session with the case manager. We have been able to get DS to do virtual meetings, even when he does not want to. We are not above giving him either a consequence or a reward to get him to comply. At times, he has been extremely angry with us for making him do something, but we have still made him do it. However, he has not, for example, locked himself in his room and created a physical barrier to compliance -- he might storm around and have a fit, but if we say he must, he will sit in front of the computer screen for whatever meeting is necessary.

It's hard for me as a parent to bear the brunt of the hostility in order to get him to interact with the professionals. Really hard. I'm a really sensitive person who wants harmony and feels personally hurt by his hostility, so years of this have taken a deep personal toll on me. I'm sorry it's so hard at your house, too. I hope you can figure out a few things to help.

This is all really helpful. Thank you.

We've done a lot of this in the past. Somehow things had gotten better, and I didn't have to intervene so closely for a year or two, and now-- all of a sudden, it looks like maybe I should again, but it's a judgement call. And in the meantime, the resistance which we had gotten ways to handle has been building up again.

Medication, any and all medication aimed at mood or concentration, is completely rejected here. There's huge resentment that we insisted on them for several years, and a stark declaration that dd will *never* take them again. Maybe someday she'll moderate her opinion, but probably not soon.

It's helpful to remember that I do know behavioral techniques for getting more cooperation. But yes, if I do that, it will mean a major battle, so I need to make sure the results are worth the fight. Dd will absolutely lock herself in. She also might leave the house, and be gone for hours. It's been a while since that happened, but I haven't needed to push her that hard recently. There have been other responses, but they're less likely. It's hard to brace myself for the sort of pitched battle which I know we would face, when right this moment I have a pleasant cooperative dd who will help with things when I ask.

Right now she's still failing math, but she *did* go to office hours yesterday, and reported back some progress. So that's something.

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5 hours ago, PeterPan said:

So just totally off the wall, but if her special interest is say D&D (which I'm not saying I'm a fan of, just saying if), then there might be some covid-friendly ways to make connections even when they can't get together to do it. I've been really surprised to see these D&D spinoff videos on youtube. It's sort of like fan fiction meets youtube, where they make stories and act them out. Also there would be fan fiction, which she might be able to find contests for. 

 

Oh yeah, my youngest's special interest is D&D, and my family is playing SO MUCH Zoom D&D since the pandemic.  Cat easily plays 12 hours of D&D a week virtually, and my husband and oldest play at least 6-7 hours.  In a way, it's been great, because most of Cat's "main" D&D group is graduating from high school this year and going to college next year, and I think there's a real chance that they'll continue to play together, since they've had this year to get used to doing it virtually.  They play on Friday nights with a group of friends that they used to play with who graduated from high school a couple of years ago, even though one of them joined the Air Force and is stationed in South Korea.  

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23 minutes ago, Terabith said:

Oh yeah, my youngest's special interest is D&D, and my family is playing SO MUCH Zoom D&D since the pandemic.  Cat easily plays 12 hours of D&D a week virtually, and my husband and oldest play at least 6-7 hours.  In a way, it's been great, because most of Cat's "main" D&D group is graduating from high school this year and going to college next year, and I think there's a real chance that they'll continue to play together, since they've had this year to get used to doing it virtually.  They play on Friday nights with a group of friends that they used to play with who graduated from high school a couple of years ago, even though one of them joined the Air Force and is stationed in South Korea.  

That sounds so good.

Dd's interest is one she can't do virtually, but can practice at home. More involvement will have to wait until we can be in more crowded, indoor spaces, but she's really hoping that will be possible this summer.

I wish it involved friends her own age. She's basically sworn off friends, after a stressful situation with the only one she had.

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11 hours ago, Storygirl said:

And yet now, DS will arrive home from school and say, "Let's do the homework now and get it over with," and he will let me study with him.

That's amazing!!! What huge progress!!

 

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11 hours ago, Storygirl said:

First, he worked toward rewards merely by sitting down to do his homework, regardless of how well he did the work. Then when he accepted that he would do homework every day, we changed it so that he would earn the reward in different ways. I can go into more detail about this, if you would like.

Yes! :smile:

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