Ok, this is about my older child...

[PeterPan]

2 hours ago, Terabith said:

 But D&d at the public library was overwhelmingly noisy.  It wasn’t really objectively noisy.

She might be able to find alternatives. Here we have game cafes.

[PeterPan]

1 hour ago, Terabith said:

she wiggles and kicks incessantly. 

Might be the next thing to research. They'll talk about restless leg and magnesium. MTHFR defects and her B vitamins. Did you say you tried a weighted blanket on her? Or you sleep under weight so by coming to your bed she's getting weight?

I'm twitchy if I'm stressed, but that's like I watched someone die stressed. Might be something to talk with the OT about.

My dd was a very restless sleeper, and I'm not really sure why. I *think* it got better with the ADHD meds, not sure. 

2 hours ago, Terabith said:

Up till now, I have felt like our parenting style has been a good fit for our kids.  But it definitely has some drawbacks.  

So I'll just say this is what happens with spectrum. 

So if you just said to yourself hey there's a possibility this is spectrum, how much more normal would you feel? I mean, would things make more sense? Or would you give yourself more permission to feel like you're doing the right things?

Whatever you call it, I think you need to give yourself some permission here, because you know her best and have been modifying and doing WHAT IT TAKES.

[PeterPan]

1 hour ago, Lecka said:

I was also getting advice like -- if I give in to some certain anxiety things, it sends a message that those things really are scary or unmanageable, and I don't trust him or have faith in him to handle it, so I would actually be harming his confidence and feeding into his anxiety.  

I'm sorta losing the flow of the thread, but my dd found it really helpful when the doctor pointed out her anxiety was MILD. She was sort of b&w about it, like either I have anxiety (and the world is ending) or I don't have anxiety. And she tried a different doc who fed into that by trying to over-prescribe. But you could break out your 5 point scale and really talk about that. Like on a scale of 1-5, where 5 is it's going to take a professional (the police, a doctor, a hospital) to help and 1 is I've got this myself no biggee and 3 is in the middle (I can solve it with some help), where is it? 

I don't know. I'm just saying my dd found it helpful for someone to speak peace to her. The other doc blew it up so big that it made her feel hopeless, sigh.

[kbutton]

21 hours ago, Terabith said:

I have a masters degree and I can DO it, but I don't have a good feel for how to TEACH someone to write, jumping in towards the end.   I know how to do basic narration, basic paragraphs, five paragraph essay stuff.  But she was pretty much doing AP English Language.  I can read it and say, "This transition feels abrupt to me."  But I don't really know how to incrementally teach a kid how to write better transitions.  

Possible classes/tutors online: https://writefromtheheartclasses.com/ or https://www.writeathome.com/  I heard them both speak--very different styles, but I liked them both. 

Books that might touch on transitions, but definitely touch on stylistic concerns:

The Writer's Options--my son likes this, and it's making a big difference. It does depend on some grammar knowledge, but nothing really over the top. If she looked on something like Purdue OWL, she'd get what she needs (and there are SO MANY college writing centers popping out good websites these days...)
Style and Mechanics: Ten Lessons in Clarity and Grace--haven't tried it with my son yet, but it's pretty straightforward. I know this one has an answer key. 

Both will make her a more confident writer, and both are things you can do on the side as part of language arts that will move her forward in her ability to write well, IME. 

I know less about this, but it might work as well: They Say, I Say: The Moves That Matter in Academic Writing. I think this is probably something that needs to be done with a teacherish person, but maybe not.

There might be some resources on writing available from TpT, but I don't have time to look. 

[PeterPan]

On the writing gig, she might do well (and I say MIGHT) with WWS1/2. Also the Bravewriter online classes. I think maybe I'd merge your dh's comment that she shouldn't DE yet with your concern that she have structure and maybe let her hit that with a high quality online class. If she's doing well with the structure of the Derek Owens math (which is excellent, well regarded), then the Bravewriter classes might work well. 

DE/freshman comp requirements are really fast, really obnoxious. Hitting that with a no credit class first could be safer. I mean, think where she's at, but it's an option.

[Terabith]

We all have weighted blankets here.  She's got one.  We've got one.  Her sister has one.  Heck, I'd buy the cats one, if they came that small.  She's seeking company, not weight.  There was a super bad storm last night, and she is bizarrely afraid of storms. 

I've been asking myself that question, about how things would change if we thought of her as on the spectrum.   I don't know that it would make any difference?  I mean, we're pretty accepting of Cat as being on the spectrum, and she's pretty much required an individualized approach, because she doesn't even really fit into spectrum groups.  Anna's always been much more "fit into boxes," but there's still been enough uniqueness about her (and all of us really) that conventional parenting stuff hasn't ever really fit us.  We've consulted different experts off and on their whole lives, and everyone has agreed that we do things really differently than most families but that it works for our family and kids.  What's frightening about this is that it feels so sudden.  It's not; looking back, depression or anxiety was clearly sneaking up on her for the last year, but she was coping fine until she was all of a sudden NOT.  But, our whole family certainly has broader autistic phenotype characteristics.  We all have sensory stuff.  We all struggle with social norms and fitting in.  My sister and father are pretty normal people, but you have to look hard in even the extended family to find people who don't have some significant social issues.  

I showed her WWS.  It was one of the things I suggested about working on writing.  She wasn't crazy about the format.  It's hard, because she's really, really a social learner.  She NEEDS dialogue with both an instructor and peers.  I suggested that next year she do one of the Well Trained Mind classes, but at least when we looked at it, she liked the idea of a community college class a lot more.  But, her feelings may have changed in the last week.  I don't know.  To some extent, I'm kinda just like....eh, maybe it's not worth worrying about academics at all?  

If we could get her to the point she could do a scale rating anxiety or pain or anything, that would be awesome but also miraculous.  It's one of those weird holes she has.  She is completely unable to grade things.  Like the fact she didn't know how to ask questions as a preschooler.  Every other language skill was way above age level, but she couldn't ask questions.  We did speech therapy and everything for it.  She finally learned how from her sister, but she was like four at that point.  She is very much all or nothing.  There's no shades of gray for stuff.  I tried working on the incredible five point scale with them for YEARS with absolutely no progress.  Cat struggled with it but eventually could at least fake it.  I'm not sure how meaningful it is to her even now, but she can do it.  Anna can't even fake it.  The psychiatrist yesterday kept asking her to rate stuff and she kept being like, "I don't know?  Three?  Four?"  And he kept re-explaining the scale but not getting that that's the issue.  I've raised the question with her counselor of "when she can't say how she's feeling, is that a psychological thing or a language thing?"  She hasn't had language testing in a long time, but she had pretty comprehensive testing back around five and was all 95th percentile and up, but I keep thinking there are weird language holes.  But they're small enough holes and spread far enough apart that nobody else sees them.  

I don't know how severe her anxiety is, honestly.  Like with injuries when she was little....it's all self report stuff, and because of the rating scale issue, she can't even tell if this is a "big thing or a little thing."  Heck, maybe injuries even now.  She hasn't had any physical health issues in so long, I'm not certain that that has resolved.  On the one hand, her sister has a clear cut SEVERE anxiety disorder dating back practically to birth.  Cat's anxiety was all consuming and encompassed pretty much every aspect of life.  I have pretty severe anxiety.  I've had multiple psychiatric hospitalizations.  My husband has pretty severe anxiety.  Like he had a pretty serious breakdown when they were little with hallucinations brought on from anxiety (and possibly carbon monoxide and not enough sleep) and stuff.  My husband's father has severe anxiety.  He's had breakdowns.  My mother has pretty serious anxiety that comes out as control issues.  To some extent, anxiety is her birth right.  But on the other hand, she didn't show any symptoms of it until last year.  And even then, it didn't look like anxiety really so much as depression.  So, is her anxiety severe?  Or is she just experiencing it for the first time and unable to grade it?  I honestly don't know how to tell that.  

[Terabith]

With the community college, I feel pretty safe about it, because I recently took a bunch of classes there to get my teaching certification.  There were some weird classes I needed for general ed (US history, economics, something else) and the community college was cheap, so I took them there.  People here talk about courses at their community colleges, and I think maybe not all community colleges are alike?  Because I experienced it first hand and I saw what the level of course work was in the honors classes at the high school, and while I know there's a lot of writing in DE classes, having experienced this one first hand and seen what they were doing in her tenth grade English class, I really can't imagine she would struggle with the level or amount of work.  The high school classes were really, really intense.  And the courses I took at the community college were....not.  They were fine.  But like dmetler talks about the classes her kid takes at their community college and ours is not even on the same plane of existence.  It's adequate.  But it's really pretty basic.  I'm not sure it's the best choice for her, but I honestly have no idea what she needs right now.  Work to distract her?  Lack of demands to reduce anxiety?  To be pushed to engage socially?  To do stuff to build self confidence?  Rest?  Sleep?  Less sleep?  Even basic stuff like that I'm really struggling with.  Today she's done NOTHING.  And....I don't really care, but I'm just not sure if it's the right thing for her or not?  My gut feels like sleep is pretty crucial and she needs a break right now.  But my gut also is pretty adamant that breaks that go on for too long are counter productive and create depression spirals and that she NEEDS to be out and social and participating in the community, at least in measured doses.  And maybe not right now.  But I think going into next semester, it would be bad for her to be doing nothing.  

[Lecka]

I don't know how her anxiety wouldn't be severe with what you are describing.  I get you mean on an internal level, but going by her outward actions, she has severe anxiety.  

I think you would be helped by looking into autism spectrum things.  For one thing it could help more when she did see a psychiatrist.  I mean -- I would hope it would.  

Having trouble recognizing emotions is something with the autism spectrum.  

And then also -- feeling physically anxious and not identifying that as anxiety, and so thinking it is being caused by something else.  And that can go together with sensory too and can be a reason that sensory gets worse, because -- there is some sensory going on, and then some -- anxiety -- and the anxiety can get lumped in with the sensory.  Not that I think that is all that is going on, but it can be a part of it, and a part of why sensory can get worse while anxiety is getting worse.  There is also stuff about the body releasing stress chemicals that exacerbates those things.  

[Terabith]

2 minutes ago, Lecka said:

I don't know how her anxiety wouldn't be severe with what you are describing.  I get you mean on an internal level, but going by her outward actions, she has severe anxiety.  

I think you would be helped by looking into autism spectrum things.  For one thing it could help more when she did see a psychiatrist.  I mean -- I would hope it would.  

Having trouble recognizing emotions is something with the autism spectrum.  

And then also -- feeling physically anxious and not identifying that as anxiety, and so thinking it is being caused by something else.  And that can go together with sensory too and can be a reason that sensory gets worse, because -- there is some sensory going on, and then some -- anxiety -- and the anxiety can get lumped in with the sensory.  Not that I think that is all that is going on, but it can be a part of it, and a part of why sensory can get worse while anxiety is getting worse.  There is also stuff about the body releasing stress chemicals that exacerbates those things.  

Yes, her behavior definitely shows severe anxiety.  I just don't know if it would be severe in other people, you know?  It's hard to objectively describe other people's emotional states.  And, she's got a history of being dramatic.  Which goes with the rating scales and sensory stuff, for sure.  Her sister said something about how she thought maybe she had it easier, because she'd ALWAYS been anxious, and so she learned to deal with it (and got meds) when she was little.  But that Anna's like trying to learn to deal with it from scratch.  

[Lecka]

Is any of her “being dramatic” stuff that seems like it could also be anxiety?

Otherwise I’m not sure it matters.  People have coping skills, people have functioning levels.  People have perceptions.  How can anybody say who is really more anxious.  Maybe brain scans, but even then, brain scans for some things can change.  There is stuff about the size of the amygdala but I don’t think it’s like — something where you can take a ton of information from it.  

[Lecka]

Really things like this do just happen sometimes.  I am sorry.  

[kbutton]

1 hour ago, Terabith said:

If we could get her to the point she could do a scale rating anxiety or pain or anything, that would be awesome but also miraculous.  It's one of those weird holes she has.  She is completely unable to grade things.  Like the fact she didn't know how to ask questions as a preschooler.  Every other language skill was way above age level, but she couldn't ask questions.  We did speech therapy and everything for it.  She finally learned how from her sister, but she was like four at that point.  She is very much all or nothing.  There's no shades of gray for stuff.  I tried working on the incredible five point scale with them for YEARS with absolutely no progress.  Cat struggled with it but eventually could at least fake it.  I'm not sure how meaningful it is to her even now, but she can do it.  Anna can't even fake it.  The psychiatrist yesterday kept asking her to rate stuff and she kept being like, "I don't know?  Three?  Four?"  And he kept re-explaining the scale but not getting that that's the issue.  I've raised the question with her counselor of "when she can't say how she's feeling, is that a psychological thing or a language thing?"  She hasn't had language testing in a long time, but she had pretty comprehensive testing back around five and was all 95th percentile and up, but I keep thinking there are weird language holes.  But they're small enough holes and spread far enough apart that nobody else sees them.  

Okay...you absolutely need language testing, but you need CAREFUL language testing. These are all true of my son, except that his question problem persisted longer, and maybe covered more areas. Apparently she can ask some questions now, but I bet there are some she still can't ask, but it's no longer obvious stuff.

You need language tests that are NOT multiple choice. The Test of Narrative Language is a good test. The Test of Problem-Solving is also good. I would also have a speech therapist do a lot with inferences for older kids (tricky to find), and see if they trip her up. Also look at how she does with additional picture prompts for everyday events, not just what is on the TNL. So, I kid you not, my kid who testing fine, fine, fine for language but actually has a severe expressive language delay, could not tell someone what was happening in a picture where one kid is stopped on his bike and another kid is on the ground, bike is on the ground, jeans are torn, and a knee is bleeding. When asked to describe that picture...crickets--he was 13 at the time. However, he probably could've rendered great first aid if the situation played out in front of him. The TNL and the TOPS finally picked up on this stuff, and we are rebuilding narrative language from the ground up. It's helping EVERYTHING. Life, writing, math, reading--it's crazy.

I don't know how she hasn't qualified for an autism diagnosis, the more you talk (I know you don't either, lol!), so I would be looking at doing language stuff that is recommended for autism. As Lecka said, it's going to be helpful.

And get the ECLIPSE model book, lol! It will look like overkill, and it is not.

Keep your eyes WIDE OPEN for things that you think are working but actually aren't--you might be shocked at how well she's compensating on the surface even though she seems like she's either able to or not able to do something. My son is very on or off like that, but as his language comes out, we keep finding ways that he's compensating well with just blending in, following someone's lead, etc., but if the circumstances change, it's that on or off, no in-between thing. Don't get me wrong, he has some awesome lifeskills (I highly recommend him for installing LVP, lol), but there are some strange things that just don't compute. Being able to use more language is life-changing.

AAPC Publishing--look at their stuff too. It's awesome. https://www.aapcpublishing.com/ 

[kbutton]

2 hours ago, kbutton said:

The Writer's Options--my son likes this, and it's making a big difference.

So, this book I recommended. If you try, it has exercises for improved writing stylistically. She doesn't have to use her own words, just rewrite someone else's using the principles in the book. Well, the first exercise or two is very revealing. The student is given choices in what they want to emphasize in their paragraph, and a list of factual statements. These statements are comprehensive enough to include any emphasis that is offered, but once you choose and emphasis, you have to discard some facts because they will be tangential.

That is like a huge test for autism-related language stuff, lol! My son needed to be walked through that carefully. I wish I had an entire book of that exercise on repeat, honestly. It would be so, so valuable.

[Terabith]

Yeah, it would probably be worth pursuing language testing.  So yeah...she had the speech delay and sensory issues as a toddler.  But she was SO social and SO good at nonverbals that nobody thought autism.  We did the ADOS and a comprehensive evaluation at three just to check the boxes, because I was aware those were risk factors.  But hey, I thought Cat was autistic from the time she was two, and we didn't get an ASD diagnosis till eleven (after passing the ADOS three times), and she legitimately ticks every box in the DSM for it.  Anna, on the other hand, was both socially motivated and socially astute.  She didn't have repetitive interests.  She does have black and white thinking but it's in a pretty limited sphere.  It just all really does seem to come out of nowhere.  

 

[PeterPan]

7 hours ago, Terabith said:

I've raised the question with her counselor of "when she can't say how she's feeling, is that a psychological thing or a language thing?" 

=interoception

6 hours ago, Terabith said:

And, she's got a history of being dramatic.

Ok, so here's what I hate. You take someone like me with interoceptive deficits and my family definitely considers me dramatic. I retort it's hyperbole=exaggeration for the sake of effect. Nevertheless, do people who actually know me as an adult (when I now have more ability to self-advocate and put into words) tend to think I UNDER state or OVER state the extent of my problems if they're related to something I need to perceive? 

I have highly anxious responses to problems, but I tend to under state the degree the symptoms are. Because I'm under-responsive for sensory and interoception, I'm missing stuff. But they say I'm dramatic. It's kinda like that "I don't think it means what you think it means" kind of thing...

6 hours ago, Terabith said:

Yes, her behavior definitely shows severe anxiety.  I just don't know if it would be severe in other people, you know?

I guess I don't understand the other people part. Who cares what they think? Her anxiety is significant and requires significant support. She's in your bed. That's significant support.

If you mean what I think you mean, then I'll say that it's probably that it's compounded by other deficits. So if she has some problem solving deficits (just picking something), then she'd be anxious and have trouble solving her problem, which would make her even MORE anxious. Or if she's feeling things but not sure what she's feeling (interoception deficits), then those would make it worse.

https://www.kelly-mahler.com/what-is-interoception/  Kelly has an online class about interoception. What if you two watched it together and gave it a health credit? Has she already done health/PE?

Edited November 2, 2019 by PeterPan

[PeterPan]

18 hours ago, Terabith said:

Yeah, it would probably be worth pursuing language testing.

There's some interesting stuff they can do. The new video based pragmatics test might show something, and there's a collaborative problem solving test SLPs can run. The test of problem solving. etc. etc. yes multiple things that might show stuff. Narrative language, sure. 

But if you walk up to the random SLP, they'll run a CELF, say you whine too much, nothing to see here. The CELF dramatically under-identifies higher functioning, higher IQ kids with language issues. The CELF *metalinguistics* might show something.

So be picky or it's not worth your time.

[Terabith]

Yeah, I'll have to make some calls.  I'm not confident about finding SLPs who work with teens (which appears to be a bit of a unicorn:  lots of folks work with kids and lots with elderly, but I've been looking for an OT who does teens for weeks) who has access to these tests.  I'm not averse to driving, but our town is actually the health care mecca; to get to the next biggest area would be four hours in any direction.  I'll make some calls though.  It would certainly be interesting to do the Test of Narrative Language or Test of Problem Solving.  I don't think there's ANY benefit to doing the CELF or CASL.  She'll blow those out of the water.  

Will do some work on interoception for sure.  The ECLIPSE book looks interesting.  Apparently after I told her counselor that I wasn't sure if her inability to articulate her feelings was an emotional issue or a language one; she has her doing stuff with lists of feeling words and pointing to words and other AAC activities.  I know the first psychiatrist we saw said, "Oh, if it's not straight CBT, it's crap," but I don't think CBT, with all its rating scales and subtleties, would work with her at all.  I think the mixture of language/ feeling stuff and sand tray play that they're doing is a better approach for her.