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Posted

So, my dd12 (SLD reading and written expression) has been really floppy when it comes time to do any work she doesn't like or is hard.  She wraps a blanket around her arms and acts like she doesn't have arms.  Sometimes she will fidget with a pen for a minute before starting. Then, after some prodding takes out one arm to do her work.  I try to get her to use two arms (to hold her paper and write) but she typically refuses.  I talked to an OT about it last week but she seemed puzzled about it and didn't seem to know if we should pursue an OT eval.  My dd spends hours sewing, crocheting, baking and is good at art.  If I get a typical OT eval (where they copy the shapes and squiggles) I am pretty sure she will pass with flying colors.  I can't tell if this is just a response to doing work since work is hard.  I am also seeing some signs of ADHD now that puberty has hit and I don't know if that has anything to do with it. Any ideas?

Posted

This is avoidance behavior, and kids avoid things for various reasons, but often because it is hard. 

ADHD meds might help her feel more in control. I had an avoider who did so out of stress/anxiety; ADHD meds helped a great deal. Any residual issues often pointed to an area where he needed more support and/or therapy for that issue (for example, targeted language therapy for an expressive language issue). 

I think things can get worse around puberty for many reasons--work is harder, puberty is hard, they are transitioning to where they should be more independent (or we're expecting them to), etc. 

I don't know that OT would be useful unless you see signs of sensory issues in other areas. 

Definitely look for patterns in what she finds difficult and see if you can see an area that might need remediation or support. It's also okay to teach her additional coping skills and expect her to use them in place of these behaviors.

  • Like 1
Posted
16 hours ago, ChocolateCake said:

That makes sense.  When I mentioned OT to her she said, "There's nothing wrong with my arms.  I'm just lazy."😜

Self-awareness goes a long way--maybe she can come up with better ways to show things are challenging and ask for a short break (or whatever is appropriate). She might also need some kind of strategy for beginning a task she's likely to avoid, and she might be able to figure out what this would be. 

My kids responded pretty well to deciding their own schedule at this age. For my older one, we used kind of a funnel method to sort tasks into time slots. We made a visual calendar with free printables online that showed the time periods that were blocked off for tutoring, band, etc. He could see which days were already busy. Other days were very open. We'd list what he needed to do in one week--generically, like 5 days of math, 5 days of grammar, etc., and then he would determine where to put it all. He knew he wouldn't double up on math, so math would go in there daily, but he might double up on shorter things like grammar on an open day so that he didn't have to do any on a busy day.

The other kiddo needed to just experiment with what order he wanted to do his subjects and have check-ins to be sure he didn't avoid too much. He would sometimes ask to do math on Saturday so that he could skip math during the week if he was struggling, and he did follow through. My other son would've found that overwhelming and would've found a way to avoid it on Saturday too. 

Both kids could sometimes redefine boundaries over time (or by wishful thinking), so checking in does help in areas where they get more independence. 

Sometimes we found that some subjects, some years, needed to be more checking a box vs. substantive. That didn't work with math, but it sometimes worked with grammar or history. We could have a more intense year followed with a less intense year to fit around the hardest and most important stuff. 

Also, don't underestimate the power of having things listed out in black and white so they can check them off. My kids use Notgrass, and they publish checklists for the various assignments. My kids liked these a great deal in middle school. While we didn't do everything on the list (we didn't do their lit or do all the Bible assignments, for instance), having all the components of the assignment listed out made them feel like there was less to keep track of.

  • Like 1
Posted
14 minutes ago, ChocolateCake said:

She follows a schedule as far certain subjects on certain days but can pick the order.  I'm planning to have her evaluated by an SLP for language issues.  

That sounds like a good idea if she already has some issues in that area. We found it to be really helpful for my older son. The jury is out with the younger one--finding a fit for therapy is our sticking point. The testing was very helpful.

  • 3 weeks later...
Posted
On 2/3/2022 at 12:56 PM, ChocolateCake said:

She follows a schedule as far certain subjects on certain days but can pick the order.  I'm planning to have her evaluated by an SLP for language issues.  

Anything come of this?

There's no reason not to do an OT eval, but you may need a different OT, someone with more experience with emotional regulation, self awareness/interoception, ADHD issues, etc. Most kids with complex disabilities are not going to have *one* thing factoring in but multiple. So I like that she's using sensory input (wrapping a blanket around her arms) to adjust how she feels. What you don't know from what you've described is how vision, anxiety, motor planning or VMI (visual motor integration), etc. are factoring in. It's why the ps does multi-factored evals.

So yes it's avoidance, but with limited information you don't know if it's because of EF, anxiety, motor planning, what. You gave some diagnoses, so has she had psych evals? What does that report say? I would start there and get some more evals to look for things that got missed. SLP, OT, vision, that basics. It's probably a mixture, which means you will probably need a mixture of things (meds, supports, accommodations, interventions).

Posted
On 2/2/2022 at 4:59 PM, ChocolateCake said:

I try to get her to use two arms (to hold her paper and write) but she typically refuses.

Fwiw, this doesn't seem like the hill to die on. The physical act of writing was probably not essential (unless it was a handwriting page), so you could have moved to dictation with tech or scribing. That would allow you to further work through whether the issue was anxiety, EF (an initiation hump, organization), language, fatigue, growth spurt/hunger, whatever. How old is she? At 12 you have to add hunger/fatigue/puberty to the list, lol.

Be flexible on what doesn't matter. Do you have more data to share on what works/doesn't work? Anything unusual with motor planning, anxiety, narrative language, language/speech development, etc.? 

On 2/2/2022 at 4:59 PM, ChocolateCake said:

Sometimes she will fidget with a pen for a minute before starting.

Are your SLD diagnoses from a psych? I can't imagine they got that far and didn't diagnose the ADHD. You may need to update psych evals. Maybe some anxiety or depression will be apparent at this point too. Not to be morbid, but at this age that's what you're watching for. Is she literally "floppy" as well? Those people end up with not only OT issues but methylation, etc. which will affect her energy and make her *look* like she's having attitude issues. Like I said, complex, taking the time to work through, not one single explanation necessarily.

On 2/2/2022 at 4:59 PM, ChocolateCake said:

good at art. 

What kind? Doesn't tell you about her VMI and how visual motor integration is affecting her ability to do that school work. Doesn't tell you about her convergence either. Only tells you she is probably highly visual spatial. Have you read Dyslexic Advantage? You're working to her strengths?

Posted
58 minutes ago, PeterPan said:

Anything come of this?

There's no reason not to do an OT eval, but you may need a different OT, someone with more experience with emotional regulation, self awareness/interoception, ADHD issues, etc. Most kids with complex disabilities are not going to have *one* thing factoring in but multiple. So I like that she's using sensory input (wrapping a blanket around her arms) to adjust how she feels. What you don't know from what you've described is how vision, anxiety, motor planning or VMI (visual motor integration), etc. are factoring in. It's why the ps does multi-factored evals.

So yes it's avoidance, but with limited information you don't know if it's because of EF, anxiety, motor planning, what. You gave some diagnoses, so has she had psych evals? What does that report say? I would start there and get some more evals to look for things that got missed. SLP, OT, vision, that basics. It's probably a mixture, which means you will probably need a mixture of things (meds, supports, accommodations, interventions).

So, she decided against the SLP eval simply because we are moving to another state in a few months and she would rather just get it done over there.  I had her tested for APD recently but she scored at the high end of normal so the only thing I could think of to help her is the SLP eval.  She has trouble understanding language but no problem expressing herself (talks a lot).  I use Wilson with her and we do Rod & Staff English (1-2 years behind) mostly orally.  I am using the Interoception curriculum (Kelly Mahler) with my three kids.  She is in puberty and I just noticed signs of ADHD a few months ago.  She just turned 13 this week.  She is super happy and easy-going personality wise.  I had her evaluated by a psych about 2.5 years ago (SLD Reading and Written Expression) but the person wasn't that great at giving me strategies to use with her (she just said to do some work orally).  I will get her reevaluated in 2.5 months (for learning disabilities and ADHD) with a neuropsych that is evaluating her older brother. Her older brother (age 14) will have an OT eval in  a couple of weeks.  I can talk to the owner (an OT) about her some more if I have questions. 

Posted (edited)
1 hour ago, PeterPan said:

Fwiw, this doesn't seem like the hill to die on. The physical act of writing was probably not essential (unless it was a handwriting page), so you could have moved to dictation with tech or scribing. That would allow you to further work through whether the issue was anxiety, EF (an initiation hump, organization), language, fatigue, growth spurt/hunger, whatever. How old is she? At 12 you have to add hunger/fatigue/puberty to the list, lol.

Be flexible on what doesn't matter. Do you have more data to share on what works/doesn't work? Anything unusual with motor planning, anxiety, narrative language, language/speech development, etc.? 

Are your SLD diagnoses from a psych? I can't imagine they got that far and didn't diagnose the ADHD. You may need to update psych evals. Maybe some anxiety or depression will be apparent at this point too. Not to be morbid, but at this age that's what you're watching for. Is she literally "floppy" as well? Those people end up with not only OT issues but methylation, etc. which will affect her energy and make her *look* like she's having attitude issues. Like I said, complex, taking the time to work through, not one single explanation necessarily.

What kind? Doesn't tell you about her VMI and how visual motor integration is affecting her ability to do that school work. Doesn't tell you about her convergence either. Only tells you she is probably highly visual spatial. Have you read Dyslexic Advantage? You're working to her strengths?

I honestly wasn't thinking ADHD when she saw the psych.  Puberty hit and WOW, I see it now.  She's a bit floppy but it only seems to be during work time and it's not if she is doing work she actually likes.  Her cursive is beautiful and she has neat handwriting if she puts in effort.  If she doesn't put in effort, well it looks like cute butterflies or something.  She spends most of her free time crocheting or sewing.  She created a puppy out of yarn for a friend without a pattern and it looks great. I don't think she has convergence issues but we may ask about that after we move (optometrist said he didn't see any need for vision therapy).  I'm hoping to take my kids to a therapy place with multiple therapies so that we can get help for different areas of need at the same place.  Yes, I read Dyslexic Advantage and cried when I realized it was describing her.  Until that point I couldn't tell what was going on.  I mean, she had phonemic awareness at age 2 (without me teaching her) and she would make up rhymes.  So, I didn't realize she was dyslexic until age 10. 

Back when she went to preschool at age 3.5 her teacher told me she was the only kid in the class that paid attention, LOL.

 

Edited by ChocolateCake
  • Like 1
Posted
17 hours ago, ChocolateCake said:

I had her tested for APD recently but she scored at the high end of normal so the only thing I could think of to help her is the SLP eval.  She has trouble understanding language but no problem expressing herself (talks a lot). 

You can pass the screening portion of the SCAN3 and still have isolated, significant issues.

Is there a pattern to when she's not understanding? 

Fwiw, retained reflexes can affect language development, so you want to make sure to test for those. 

17 hours ago, ChocolateCake said:

if she puts in effort.

This is a key word to focus on with a bright girl who is masking and trying really hard. It means her challenges are not as glaringly obvious and can get missed. It means she's going to *fatigue* and need accommodations to let what she can do inside show. So fatigue with lots of processing, fatigue with background noise, fatigue with motor planning, whatever.

A big therapy place can be nice if they own a lot of tests. The challenge with SLP testing for language is getting someone who specializes in it who owns the test. That can just vary by the practice honestly.

It sounds like you're doing a lot of the right things! 

  • Like 2
Posted
On 2/20/2022 at 3:44 PM, PeterPan said:

Is she literally "floppy" as well? Those people end up with not only OT issues but methylation, etc. which will affect her energy and make her *look* like she's having attitude issues.

This can also be connective tissue disorder stuff. Ehler's Danlos is one of the more common ones, but there are plenty of others. 

23 hours ago, ChocolateCake said:

Yes, I read Dyslexic Advantage and cried when I realized it was describing her.  Until that point I couldn't tell what was going on.  I mean, she had phonemic awareness at age 2 (without me teaching her) and she would make up rhymes.  So, I didn't realize she was dyslexic until age 10. 

Back when she went to preschool at age 3.5 her teacher told me she was the only kid in the class that paid attention, LOL.

My 14 y.o. has a similar profile. These kids are hard to pin down!

5 hours ago, PeterPan said:

You can pass the screening portion of the SCAN3 and still have isolated, significant issues.

It sounds like you're doing a lot of the right things! 

Yes on both! My son's APD issues were very specific and hard to pin down. 

It's nice to see you on here, PeterPan!

  • 3 months later...
Posted

Well, I got the test results and there's no ADHD or APD (she scored above average on almost everything...not even borderline).  So, do I just have her evaluated by an SLP and OT?  I can't think of what else to do. 

Posted
3 hours ago, ChocolateCake said:

Well, I got the test results and there's no ADHD or APD (she scored above average on almost everything...not even borderline).  So, do I just have her evaluated by an SLP and OT?  I can't think of what else to do. 

Maybe back up and bring all this into one place because I'm losing the flow. Maybe talking it out will make something obvious to you.

-She had previous diagnoses of SLDs or those were suspected?

-What did the new evals say and who did them and what tests and tools did they run? 

-What are your current symptoms and how have they changed?

-What seems to make the problems better or worse?

-Is there a pattern like fatigue?

-Was there any discussion of depression or anxiety?

-Was there anything kind of discrepant or odd in the testing, even if it didn't result in a diagnosis? For instance, maybe a subtest that was outlier from everything else...

When you don't know what to do, reread the report, go through all the basics, work through it again like that, see what got missed kwim? Fwiw my dd was aggravating like that, sort of lots of odd things but never any one thing that would push into a wow diagnosis. So I guess "lots of little quirky things that add up" should be a diagnosis, lol. For her it was then a matter of working through those lots of little quirky things.

I think this happens because the kids are so bright. They mask and they just have crazy strong compensatory skills. So as demands pick up, the issues become more apparent. They were less apparent when she was younger and just became more and more problematic as she got older. So not gettting some wow diagnosis does NOT mean you're not seeing things. Sometimes it really is that accumulation of a bunch of pesky little things.

Sorry for the non-answer. Maybe when you write all that out, something will become obvious. 

And btw I wouldn't take the word of a psych in a psych's office on the APD, mercy. That's a multi-hour eval in and of itself and requires specialized equipment. My dd "passed" (by 1 point, snort) the screener on the SCAN3 and had DEBILITATING issues functioning with background noise when she got to college. So whatever testing was done you're going to need to take with a grain of salt. You're looking at the limitation of the test that was done in that setting with that equipment. Different test might get more interesting/informative results.

That's why you have to reread your report and see exactly what was done. I know you're tired. It's ok to go binge on some Olive Garden and ice cream and deal with it when you're fresh. 

  • Like 1
Posted

-She had previous diagnoses of SLDs or those were suspected?

Yes. Dyslexia and Dysgraphia and they were confirmed

-What did the new evals say and who did them and what tests and tools did they run? 

Neuropsych.  

  1. Kaufman Test of Educational Achievement- Third Edition (KTEA-3) – Form B - selected subtests

  2. NEPSY- II -Developmental Neuropsychological Assessment – Second Edition (NEPSY) -selected subtests

  3. Comprehensive Test of Phonological Processing- Second Edition (CTOPP-2) - selected subtests

  4. Test of Orthographic Competence (TOC) - selected subtests

  5. Integrated Visual & Auditory Continuous Performance Test- (IVA)

  6. Conners’ Behavioral Rating Scales – Third Edition - Parent and Teacher Long Form (Conners’-3)

The only low average/below average scores were relating to reading comprehension, writing, spelling and auditory attention. The main advice was to see an audiologist to rule out APD.  She was tested a few months ago (SCAN-3).  The audiologist said that the test usually takes at least 2 hours but that my daughter was done in less than an hour and needed no breaks.  She said we can re-evaluate in a year but after some prodding by me admitted it is unlikely she will be diagnosed with APD based on her high scores.  

-What are your current symptoms and how have they changed?

Once puberty hit I noticed some forgetfulness and inattention (mostly during schoolwork).  She will ask a question and then 5 minutes later ask it again and say she forgot what I said.   She forgets to do chores and drink enough water.

-What seems to make the problems better or worse?

Background noise or someone speaking from another room can lead to misunderstanding.  She thinks you said something that rhymes with what you actually said.  This happens multiple times per day.  If her sister is in the room or she sees a butterfly out the window she focuses on that and not her work (unless it is work she likes).

-Is there a pattern like fatigue?

No

-Was there any discussion of depression or anxiety?

No

-Was there anything kind of discrepant or odd in the testing, even if it didn't result in a diagnosis? For instance, maybe a subtest that was outlier from everything else…

Only that there is a problem with auditory processing…which we already knew.  This was also in the report she got 3 years ago by a psych.

Posted

I've seen 3 different audiologists now for APD stuff with my kids, and all three approached the testing differently, radically differently. 

https://www.proedinc.com/Products/31050/differential-processing-training-program-3book-s.aspx  I did a lot of this set with my ds and now an SLP is doing 

https://www.proedinc.com/Products/37614/the-central-auditory-processing-kit.aspx with him.

I don't know if those programs would catch her holes, but they've been good here.

Developmentally you want the retained reflexes integrated to let the language and other pieces come together.

How was her processing speed? Did the neuropsych do any testing on language like a word retrieval score? A neuropsych did that testing with my dd and came up with crazy low scores. When you pair poor word retrieval and low processing speed, a lot of what you're seeing in real life starts to make sense.

5 hours ago, ChocolateCake said:

Once puberty hit I noticed some forgetfulness and inattention (mostly during schoolwork).  She will ask a question and then 5 minutes later ask it again and say she forgot what I said.   She forgets to do chores and drink enough water.

Some of this is straight EF and interoception. This means it will respond to work on EF (targeting working memory and the prefrontal cortex) and direct interoception work.

You might look at the samples of those APD programs I linked and see if you think either would catch some holes with her. If her phonological processing was weak and she did it focusing on visual, the APD work will have her going back to do it with auditory. 

It's a grungy stage when you realize some things aren't going away.

  • Like 1
Posted
17 hours ago, ChocolateCake said:

Well, I got the test results and there's no ADHD or APD (she scored above average on almost everything...not even borderline).  So, do I just have her evaluated by an SLP and OT?  I can't think of what else to do. 

I would definitely find a good SLP who specializes in the literacy, reading, and writing. It's entirely possible that something like this can be hard enough to completely jam up the works and cause ADHD-like symptoms. 

Both my kids have narrow but deep language issues (only one has dyslexia, but both have disorder of written expression), and one can still function, but the other one could write nothing except sentences (and wrote AMAZING compound complex sentences that were crystal clear). It was very weird, and a lot was blamed on his ADHD, which was very well-controlled by meds when he wasn't asked to do academics that were beyond his ability. When he got language help, he engaged and progressed amazingly. My other kiddo has also done really well with language therapy, but his was for totally different issues (looked similar on paper but not in real life).

Did you see the thread about Rooted in Language offering free "office hours" online? There is a schedule and Zoom information--they are a well-regarded SLP practice that could help you figure out if their materials would be helpful to you, and they would also be able to tell you what to look for in a literacy-based SLP. I have not found their materials to suit my personality and way of working, but they ultimately cover a lot of the same skills as other materials that I do like (Mindwing Concepts is the bomb). I would try their office hours if I were you. I have spoken to them in person and have friends that have used their in real life services (they are about maxed out), and they are wonderful people. 

Posted
9 hours ago, PeterPan said:

I've seen 3 different audiologists now for APD stuff with my kids, and all three approached the testing differently, radically differently. 

https://www.proedinc.com/Products/31050/differential-processing-training-program-3book-s.aspx  I did a lot of this set with my ds and now an SLP is doing 

https://www.proedinc.com/Products/37614/the-central-auditory-processing-kit.aspx with him.

I don't know if those programs would catch her holes, but they've been good here.

Developmentally you want the retained reflexes integrated to let the language and other pieces come together.

How was her processing speed? Did the neuropsych do any testing on language like a word retrieval score? A neuropsych did that testing with my dd and came up with crazy low scores. When you pair poor word retrieval and low processing speed, a lot of what you're seeing in real life starts to make sense.

Some of this is straight EF and interoception. This means it will respond to work on EF (targeting working memory and the prefrontal cortex) and direct interoception work.

You might look at the samples of those APD programs I linked and see if you think either would catch some holes with her. If her phonological processing was weak and she did it focusing on visual, the APD work will have her going back to do it with auditory. 

It's a grungy stage when you realize some things aren't going away.

Thanks for the list!  I will have to look into those.  Her word retrieval, phonological processing and rapid naming are all in the average range.  We're almost done with our Interoception curriculum.  I actually didn't get it for her but more for her 15 y/o brother (recently diagnosed ASD) but I do it with all my kids.  Her interoception is really good actually.  She will say that the audiologist said there wasn't a problem, but there's obviously a problem.  She is very aware.  

Posted
1 hour ago, kbutton said:

I would definitely find a good SLP who specializes in the literacy, reading, and writing. It's entirely possible that something like this can be hard enough to completely jam up the works and cause ADHD-like symptoms. 

Both my kids have narrow but deep language issues (only one has dyslexia, but both have disorder of written expression), and one can still function, but the other one could write nothing except sentences (and wrote AMAZING compound complex sentences that were crystal clear). It was very weird, and a lot was blamed on his ADHD, which was very well-controlled by meds when he wasn't asked to do academics that were beyond his ability. When he got language help, he engaged and progressed amazingly. My other kiddo has also done really well with language therapy, but his was for totally different issues (looked similar on paper but not in real life).

Did you see the thread about Rooted in Language offering free "office hours" online? There is a schedule and Zoom information--they are a well-regarded SLP practice that could help you figure out if their materials would be helpful to you, and they would also be able to tell you what to look for in a literacy-based SLP. I have not found their materials to suit my personality and way of working, but they ultimately cover a lot of the same skills as other materials that I do like (Mindwing Concepts is the bomb). I would try their office hours if I were you. I have spoken to them in person and have friends that have used their in real life services (they are about maxed out), and they are wonderful people. 

Thanks!  I think I get what you mean by the RIL not suiting you as I have looked at their page before and can't wrap my head around it.  I can't use anything too detailed (breaking something into lots of parts) as my brain doesn't work that way. 

I have Deepening Discourse sitting next to my exercise bike but I've only gotten a few pages into it.  It's on my list of things to do along with pre-read rising 10th graders history, plan his literature, sell my house, give attention to the 7-year-old and move to another state.  I will get to it though!

 

Time for some dark chocolate, LOL. 😁

  • Like 1
Posted
2 hours ago, ChocolateCake said:

Her interoception is really good actually.  She will say that the audiologist said there wasn't a problem, but there's obviously a problem.  She is very aware.  

Is she actually hyper-responsive? My dd was like that, and the interoception approach was still important. If her system is getting overloaded, she'll tend to shut down just to stop the onslaught. Anecodatally, an SSRI can help with that.

https://www.amazon.com/Loud-Bright-Fast-Tight-Overstimulating/dp/0060932929/ref=sr_1_1?keywords=too+loud+too+bright+too+fast+too+tight&qid=1654715875&sprefix=too+loud%2Caps%2C90&sr=8-1

  • Like 1
Posted
2 hours ago, ChocolateCake said:

Her word retrieval, phonological processing and rapid naming are all in the average range.

Seems like that means what you did worked!

  • Like 1
Posted
2 hours ago, ChocolateCake said:

I have Deepening Discourse sitting next to my exercise bike but I've only gotten a few pages into it.  It's on my list of things to do along with pre-read rising 10th graders history, plan his literature, sell my house, give attention to the 7-year-old and move to another state.  I will get to it though!

Whew, that's quit the list!

  • Like 1
Posted
33 minutes ago, PeterPan said:

Is she actually hyper-responsive? My dd was like that, and the interoception approach was still important. If her system is getting overloaded, she'll tend to shut down just to stop the onslaught. Anecodatally, an SSRI can help with that.

https://www.amazon.com/Loud-Bright-Fast-Tight-Overstimulating/dp/0060932929/ref=sr_1_1?keywords=too+loud+too+bright+too+fast+too+tight&qid=1654715875&sprefix=too+loud%2Caps%2C90&sr=8-1

She's not but the OT said my son is both hypo/hyper in different situations.  It's something for me to learn more about.

  • Like 2
Posted
3 hours ago, ChocolateCake said:

Time for some dark chocolate, LOL. 😁

Definitely! Hopefully something you really like. Good luck with all of that!

57 minutes ago, ChocolateCake said:

She's not but the OT said my son is both hypo/hyper in different situations.  It's something for me to learn more about.

Sometimes the only consistency in life is inconsistency. Lol!

  • Like 1
Posted
6 hours ago, ChocolateCake said:

She's not but the OT said my son is both hypo/hyper in different situations.  It's something for me to learn more about.

Yup, mixed happens. I just assumed my ds was straight hypo responsive and recently realized we were seeing things where it was hyper-responsivity.

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