Updated Evals/ Dyslexic kid whose relative strength is reading

[Terabith]

So, the school did an updated triennial evaluation for Cat's IEP.  My expectations were pretty low, but I'm (mostly) pleasantly surprised.  I would have liked to see an evaluation of written language (ability to write a paragraph/ essay), because that's an area I'm pretty worried about, but otherwise I think it was decent.  

They did the WISC-5.  Her GAI dropped to 118 from 131 on the WISC-4 when she was seven, but I think that's pretty typical for a kid with SLD.  Her Verbal Comprehension was 121 (Similarities 12; Vocabulary 16), her Visual Spatial was 105 (block design 10, visual puzzles 12), Fluid Reasoning 118 (matrix reasoning 11, figure weights 15), working memory 82 (digit span 5, picture span 9), processing speed 98 (coding 9, symbol search 10).  Her cognitive proficiency was 87.  Not entirely sure what that is.  In contrast, her WISC-4 scores five years ago were Verbal Comprehension 119 (vocabulary 15, similarities 14, comprehension 11); perceptual reasoning 137 (block design 15, picture concepts 15, matrix reasoning 18), working memory 104 (digit span 11, letter-number sequencing 11), and processing speed 83 (symbol search 8, coding 6).  I'm not sure how much of the difference is due to age/ disabilities versus the changes in the test itself, but the verbal domain seems fairly similar, but a sharp drop in perceptual reasoning, but that seems to have been split into fluid reasoning and visual spatial now.  

They did a Bender Gestalt, which she scored a 115 on, so I don't think fine motor skills are really a major problem for her.  

They did the Kaufman Test of Educational Achievement.  Her score on Math Concepts and Applications was 100; her Reading Comprehension was 120; her spelling was 68.  Her associational fluency was 103 and letter naming facility was 95.  They also did reading and math from the Woodcock Johnson 4.  Her broad reading was 123 and her math was 80 on that.  Not sure why such a big gap between math on the Kaufman versus the WJ.  She is a grade below her age, so it's possible that they haven't covered as much math as expected for her age, but I have observed some issues with math, but I'm not really sure what the specific issues are, since I'm not trying to TEACH her math anymore.  She has completed all 12 levels of the Wilson program, and while her spelling is 68, she gets pretty darn close to the correct spellings.  In practice, in a "is it right or is it wrong" way, she's usually wrong, in that words are misspelled, but they are misspelled in completely logical, phonetic ways that spellcheck can most of the time figure out what she's trying to say.  

They had her do the BASC.  She scored at risk in "attitude toward teachers," at risk on "self reliance" (not sure what that means), and significant in terms of anxiety and interpersonal relations.  Her math teacher filled out the observations of her.  (Catherine does not really like nor dislike her math teacher.)  Her math teacher mostly scored her as average, with at risk scores in terms of withdrawal, social skills, and leadership.  Apparently her math teacher commented that she sometimes avoids other teens, isolates herself from others, and has difficulty making friends.  She sometimes appears to be unaware of others or irritable.  This all sounds very much like my child.  

The BRIEF scored clinically elevated on ability to self monitor (99th percentile), shift (99th percentile), task completion (97th percentile), and potentially clinically elevated in working memory (96th percentile), plan/ organize (97th percentile), and mildly elevated in terms of emotional control (90th percentile).  I need to do some research on the BRIEF and what it indicates.  

The science teacher, whom she adores, filled out the Autism Rating Scale.  It related her as elevated in social/ communication, peer socialization, and sensory sensitivity; and slightly elevated for DSM scale and social emotional reciprocity.  Honestly, the kid has passed the ADOS twice, but everyone who works with her one on one for an extended period of time thinks she is probably autistic, including me.  I'm not sure that there is anything to DO about that at this juncture.  Every time we've tried counseling it's mostly been a bust.  She's cooperative, but she doesn't have any idea of the source of her anxiety, so counseling doesn't really help with the anxiety.  We've tried several counselors, and it's always mostly just wound up being her talking about her D&D campaigns (special interest).  But I think she probably is on the spectrum.  

It will be interesting to see what they say at the IEP meeting.  I'm a bit worried that they are going to try to remove her IEP, since she's not receiving regular instructional special ed services.  She does go to the special ed room for homeroom, which has been very helpful, since it is a much calmer environment in the morning.  She really likes public school, and is more comfortable there socially than at Catholic school.  The English teacher is terrible (even in honors English), and while she's getting A's on all of her tests, her grade has dropped to a C because of missing homework assignments.  However.....I'm pretty sure she's doing the homework.  It's possible she's not turning it in.  But, I've been in that English teacher's classroom several times.  She is super unorganized.  She doesn't input grades until the end of the quarter.  Cat claims she is turning them in.  I believe it is entirely possible that the teacher has lost several assignments, especially ones that she missed when she was absent and were turned in at separate times.  She also has some problems in math, both in terms of not really understanding the material (but I have no way of knowing what they are working on or to really help her....there's no textbook or papers sent home) and in terms of organization.  But again, at conferences, the math teacher said the stuff that is not getting turned in are assignments that are not asked for "no please turn this in now" and no set place or routine to do so.  (Mostly beginning of class assignments that they're supposed to hand in unprompted every two weeks or so.  That would really challenge MY executive functioning, let alone my seventh grader's.)  She has an A in social studies and B's in science and choir this quarter.  (The choir grade is brought down due to her inability to read music.  But again...nobody is teaching them to read music.  They are just being tested on their ability to do so.  I'm student teaching in the same school system this semester, and I have been shocked at how much of the time there is no instruction on topics but a LOT of testing over them.  I'm honestly not sure how we're expecting first graders to learn how to read with no real reading instruction, but that's the way it's set up.  Just a lot of testing of sight words and ability to read Fountas and Pinnell readers without any instruction, let alone any phonics.)   I worry about how high school will go if they remove the IEP.  She needs for spelling not to be counted off, and she needs designated adults to go to when she's having trouble with something, as well as a back up adult.  This year it has mostly been the stupid locker.  But when things go badly and she doesn't know what the plan is, she doesn't problem solve; she melts down, partly because she is terrified of getting into trouble.  I had thought her executive functioning was pretty decent, but that screening seems to indicate that at least she does not feel that it is.  I sometimes wonder how much of her anxiety is rooted in the absolutely abysmal working memory.  I am worried about her math scores, especially since I intend to fight for her to take eighth grade algebra.  It's going to be a fight, since she probably will not score high enough on the algebra readiness test, but the high school does not have any honors algebra classes.  And in our school district, the non honors classes have a LOT of behavioral issues.  When other kids are misbehaving, she completely tunes out and reads a book or otherwise checks out of instruction.  I do not think she would be successful in a non honors classroom for that reason.  And at the Catholic school, with small classes and a teacher who explained things in a way that she got, she had A's in math.  She wasn't in the accelerated class (algebra in 7th grade), but even their regular classes took algebra in 8th grade, and she was on track to manage that there at the end of sixth grade.  Her wonderful Wilson tutor (who works at the autism school) is going to work with her now on algebra concepts.  I'm hoping that will help.  I'm really tempted to get Math U See Algebra and try to start working through it this summer.  But I feel pretty strongly that she needs to be in honors math, despite poor test scores and a current C in pre-algebra.  

I don't have a good feel for what her life plan or post high school goals should be.  Marry someone who is rich?  I'd like her to do some career testing in a year or two.  The high school has a culinary program that she is interested in doing, and I think she might do well in that, but cooking isn't really a well paying profession.  She's mentioned engineering, and her personality is very engineer-like, but with those math scores, I really don't know.  She loves biology, but I'm not sure how successful she will be going away to college.  I think she might be able to handle it, but I'm not POSITIVE.  The bigger issue is current college costs.  We don't have the money to pay a ton for college.  I think my older one has the potential to get significant college scholarships, but I'm not sure this child will.  And current costs are so exorbitant, I am not sure having a lot of student loan debt is a very smart idea.  

[PeterPan]

It would be nice if they had done a tool for pragmatics and something for problem solving. That would give data for the problem solving issues. I think we did the ASRS. I guess see what happens. It's hard to wait and they really don't tell you. Or did they tell you the results on that ASRS?

[Terabith]

No, they didn’t run pragmatics or problem solving.  The next time we do a private one (probably around 16, for college), I will definitely ask about that.  I mean, I will ask anyway.  But I don’t know how much good it would do.  

[PeterPan]

The ps should have run pragmatics and problem solving and something for narrative language, something for metalinguistics. These are normal parts of complete evals and the ps knows it.

SLDT or the new CAPs

TOPS

TNL

CELF-Metalinguistics

All these would show deficits in kids like yours. If the ONLY tool they ran for ASD was the ASRS and they didn't run ANY of these other tools, honestly I would file a dispute through the IEE process and get it done on their tab properly. This is getting absurd.

Edited March 24, 2019 by PeterPan

[Lecka]

Maybe I’m naive but in my mind I would expect them to add supports for her based on the rating scales.

I also think it’s significant that they asked a teacher to fill out the Autism Rating Scale.  Unless you requested that, I don’t think that’s something that they are having filled out for every kid with an IEP.  

Good luck with the meeting.  I hope it goes well.  

[Lecka]

As for what they might do — maybe add a social skills group?  Maybe add a social/emotional learning section to her IEP?  Something like this?  

I’m just guessing!  

[Lecka]

Hypothetical question — have you discussed autism with them?  Did you ask for the autism rating scale?

If not — I think it’s pretty appropriate for the results to be discussed at the meeting.  I think it’s pretty appropriate to have a discussion of the current results and decide what to do from there, rather than the school going further before discussion with the parents.  

If you’ve been bringing up autism to them for a while — I think that is different.  

[Lecka]

Just some more of my thoughts.... that she currently isn’t turning in homework you think she has done — that could be something it’s appropriate for her to get a support for.  It looks like she has scores and current functioning that would make that seem appropriate.  (As a guess.)

Also as a guess..... my oldest son has exited an IEP (so has my daughter but it was just speech).  If the Autism Rating Scale is a new thing for her and you didn’t request it ————— then they decided to do it for some reason, and probably to justify doing more..... ime it comes across like they want to add things.  When my son was exiting his IEP they weren’t adding any new screenings!  

It just comes across that way to me.

I also don’t know a lot about working memory but I think it does go along with executive functioning.  That might be something to check on.  I don’t know but I feel like I have seen it mentioned with executive functioning.  

[Terabith]

I didn't really talk about autism with them or ask them to do any autism testing.  I actually didn't ask for anything; they just said they were updating her testing because it's been a number of years.  The school system actually hadn't tested her since she was five, since when we entered they accepted the testing from the neuropsych that we had had done.  I think I had told the special ed teacher whom she goes to in the morning that her psychiatrist has diagnosed her with autism, but I don't think that was anything official.  It certainly wasn't in writing.  

I don't expect them to add supports.  Honestly, I don't think she NEEDS added supports.  The English teacher says she isn't turning in the work, but it's really only work that she wasn't there at the time it was collected, so she'd have to make special arrangements to turn it in.  She had the flu and was out for a week, and it seems like most of the missing assignments were from that week.  And Cat SAYS she's turned it in, and having seen the English teacher's organization, I really honestly think the English teacher has misplaced it.  There was one time she said, "Oh, yeah, I did find that."  Cat doesn't lie.  At all.  I don't think it's a moral strength; I think she doesn't know how.  If she doesn't remember turning something in, she says, "I don't remember."  Honestly, I'm just hoping they don't remove the IEP.  If they want to add supports, that's fine, if they're subtle.  She adamantly does not want to go to separate rooms for small group testing, and she's getting A's on most tests.  I do want to ask if she could have a note card for formulas.  The tests she has bombed in math and science have mostly been ones where there are lots of formulas (area, volume, and surface area of various geometric shapes, for instance).  She can do the math, but she struggles to remember what formula goes with what.  

[Lecka]

It sounds like they are seeing something that made them want to choose the autism rating scale, and maybe the BASC.  

You can see what they say at the meeting.

You don’t know what they offer right now.  There might be options you don’t know about right now.  

Ime I have been able to say I know my older son doesn’t want certain things.  Sometimes they might say “well we think it’s worth a try,” sometimes they might say “let’s not pursue that.”  You can discuss.  You can decline some things, I have declined things before.

I have given some things chances that have turned out better than I expected.  

There have also been things not go as well, that we all thought might go better than they did. 

You can ask for a follow-up meeting if anything new starts.  I think it can be nice to schedule a follow-up with maybe just the most relevant person (not the whole IEP team) and then you know you will have an update one month (or whatever) down the road.   

I hope it goes well!  It sounds like things are going well with your daughter over all 🙂

[Terabith]

Things really are going well for her.  Socially, she really likes public school.  It's a better fit for her than Catholic school socially.  Academically, the Catholic school was better.  I don't think the English teacher is very good (honestly, she's awful), and the math teacher is not a good teacher for HER.  Academically, I'm not sure the school is a great fit.  She loves the science teacher.  The social studies teacher is decent.  She likes art and choir.  I'm hoping she has better math and English teachers next year.  She's even handling riding the bus decently, which we were VERY worried about.  (She had ridden it the first week of school and things didn't go well.  So we were driving her, but my husband took a new job that precludes him driving her, and I'm doing student teaching, which makes me unable to drive her.  We were so concerned my husband really considered not taking the job, but while she doesn't LIKE it, she's coping.)  

She's almost 14.  I asked her if she wanted to come to her IEP meeting, since I think 14 is when they are asked to start coming, but she said no.  She says she feels self conscious with people talking about her and she'd rather not be there.  I asked her if there was anything she thought would make her experience better, and she said no.  Her tutor (who works at the autism school and is WONDERFUL for her) suggested the note card for formulas.  I sent her the results of the evaluation to see if she had any other ideas.  

[Lawyer&Mom]

Missing assignments and problems with organization plus probable Autism.  (I’d trust your gut way more than I trust the ADOS with a high IQ girl.)  I would want to work on Executive Functioning.  Build the routines now, she will need them later, whether she goes to college or not.  I wish I knew what to recommend, but I haven’t a clue.  (I’m 39 and still struggling with Executive Function now.  I just know that the cracks you see at 14 can be caverns and caves at 19 when the structure of high school falls away.)

[Storygirl]

She would need to qualify for an IEP under one of the categories https://www.understood.org/en/school-learning/special-services/special-education-basics/conditions-covered-under-idea

Is her current category SLD (specific learning disability for the dyslexia)?? The category should be on the first page of the IEP document or somewhere else prominent. It may not be likely for her to qualify for an IEP under SLD with her scores.

However, her working memory score is significantly weaker and will likely be affecting math and writing (all academics, really, but I think those are the areas where output may be effected).

Does she by chance have an ADHD diagnosis? That, along with her other difficulties, could qualify her under Other Health Impairment. Especially the anxiety. The anxiety could qualify for OHI, I believe. I think that category is your best bet for retaining the IEP. If your school has not asked for it, I would suggest that you bring to the meeting a letter from her doctor with the anxiety diagnosis documented, along with any other diagnoses in her file.

It seems that the school realizes she needs additional support in certain areas. If she cannot qualify for an IEP with her scores, I would think they would write a 504 plan for her. Usually a 504 plan would not allow a change of placement, but if everyone agrees for her to be in a certain room for homeroom (or at the beginning of the school day, if there is no homeroom period in high school), that the school might find a way to allow that without having it spelled out in an IEP.

I'm glad she is doing well in general!! Since your school accepted the outside score reports, it suggests to me that they want to work with you and will not purposefully create roadblocks. It's so nerve wracking to wonder how the IEP meeting is going to go. I would go in expecting to advocate hard for an IEP based on OHI but perhaps be prepared to accept a 504 if it can include enough accommodations to support her.

[Storygirl]

An idea for the beginning of the day, which may or may not work...

Our high school allows students to have Late Arrival and/or Early Dismissal, if they do not need all class periods to earn enough credits for graduation. So instead of study hall, they skip first period and come to school later. This is normally only for upperclass students. But if you think it might help her to arrive after the first rush of the day, you could ask about it.

[Terabith]

She currently has an IEP.  She had an ISP since she was eight.  At that point, they accepted her outside testing.  We were homeschooling, and she qualified for tutoring through the public schools.  I took her there once a week.  When she started private school, it continued, and they came to the private school.  When she started at public, they automatically transferred it to an IEP.  It is under SLD written expression because of her spelling.  I think she may still qualify; her spelling score is only a 68, even though her reading was 120, which is commensurate with her IQ, which has dropped a bit on this testing, but I'm not that worried.  Her IQ scores have varied a LOT.   I know she wouldn't qualify for SLD based on reading, but even back when she got one originally, that wasn't the qualifying diagnosis.  It was the spelling.  Apparently the meeting this week is only to go over testing and decide if she still qualifies; the actual IEP meeting is end of April.  But I take it as a good sign that they called to schedule the IEP meeting before we even had the eligibility meeting.  

ADHD is an interesting question.  The neuropsych diagnosed mild inattentive ADHD when she was seven.  We tried a few different meds, to see if they would help with academics due to improving memory and processing speed.  We didn't see any benefit from the nonstimulants, and she got manic on ritalin.  That was kind of scary.  It was a major personality change.  She acted like she was on speed.  That was the end of our experiments with ADHD meds.  And honestly.....I've never seen any evidence of ADHD in her daily life.  Even the missing assignments are only in one class (with a really disorganized teacher) and correlate with the week she was out with the flu.  So I'm having a hard time getting too worried about them.  

I don't think anyone questions the anxiety.  That's long standing and pretty evident to everyone, and even on their updated testing with meds that make her functional, that still registered as clinically significant.  So I think we have a decent chance of qualifying under the anxiety diagnosis (either OHI or emotional disturbance) even if we don't under SLD.  Heck, she might qualify under autism, since her psychiatrist has diagnosed it and the teacher picked up concerns.  Interestingly, they had practice testing for science on Friday, and it lasted three periods but she, and apparently most people, finished before the end of first period.  She said kids got loud, so she got permission to go read in the closet.  

Working memory definitely impacts a lot of academic stuff, but math is the area I see the biggest effects.  I have concerns about her writing, but it's hard to know if it's evidence of disability or lack of instruction.  She's really not had very much writing instruction at all.  She reads a lot and has an amazing vocabulary; she ceilinged the Peabody Picture Vocabulary Test when she was 8.  She has a decent "voice" and writes pretty decent sentences.  It's longer things like essays that don't seem great to me, and that very well may be a lack of instruction.  She has the diagnosis of disorder of written expression, but spelling seems to be the area most impacted.  (But she's SOOOO much better than she was.  She completed the Wilson program, and most of the time, spellcheck can correctly identify what she's saying.  She still chooses the wrong phonograms most of the time, but her spellings always make sense and follow the rules.  It's just the ea/ ee or er/ ir/ ur type stuff.  Or irregular words.)  

I think they want to work with us.  They've mostly been pretty good in that regard, especially considering they didn't know her at all at the beginning of the year.  Next year she'll still be at the middle school.  High school doesn't start till 9th grade here.  I'm a bit concerned about how that transition will go; the middle school has about 500 students.  The high school has 2000.  My older daughter is at the high school, and academically, I think it's much better, but it's definitely pretty impersonal.  

Edited March 31, 2019 by Terabith
week, month....same thing, right?

[Storygirl]

DD13 had her re-evaluation this year. She is dyslexic. She lost her SLD written expression designation, due to great improvements. She originally had SLD writing due to spelling that was so poor that her sentences were almost illegible. She gained SLD math, due to calculation problems (which she should have had three years ago but didn't get). And I think she barely held onto the SLD reading.

Anyway, that's just to show how it can shift. I was glad that math was added, because I didn't want her to lose her IEP; she needs the support and is switching to public school next year from the private dyslexia school. I was worried that she had improved enough to be above the level required for an SLD designation. Now she won't be evaluated again until 10th grade. If she loses her IEP at that point, I think she could get through the last two years with 504 accommodations.

Someone at her school told me that OHI is a more stable designation than SLD. Because someone can improve enough to lose the SLD, but the reasons for the OHI designation usually are permanent. That is just one person's opinion, but she works as a counselor at a school where almost all students have IEPs, so she's seen a lot. If you can get the SLD changed to OHI, I think it would give the IEP some additional staying power.

My sense about the autism diagnosis is that it is harder to get the school to agree to it. But that may be different in other areas; here an IEP for autism gives the student access to a large scholarship fund, so I think the schools require more; not all students with autism will get an IEP for autism here, if the school can meet their needs under SLD or OHI.

 

 

[Terabith]

Yeah, we definitely don't have disability scholarships here.  Sigh.  We would have been pursuing things in a very different way if we did.  That's an interesting point about OHI having more staying power.  She's going into 8th grade now, so if she keeps the IEP, we're same till she's a rising junior, which I agree, I think she can get through.  Honestly, while I hope we can keep the IEP since it has more protection and I want that protection for the high school transition, she's not really utilizing specialized instruction.  I think specialized instruction could benefit her, but I don't think it's necessary, and she's doing fine without it. In practice we'd probably be okay with a 504, but I'd prefer to keep the IEP if we can, since it's easier to keep it than try to get another one if we find out we need it.

[PeterPan]

3 hours ago, Terabith said:

she might qualify under autism

They can give her an educational diagnosis of autism without a medical diagnosis, yes. If she meets the criteria used in your state, yes she can. I just read a study looking at what percentage of kids receiving an educational diagnosis then met the criteria for a medical diagnosis when they were cross-checked, and it was pretty high, like almost 90%. So yeah, if that opens doors, pursue that. It's basically just meeting the legal criteria. Find your state's definition and see if she meets the criteria. Now in an educational setting, those criteria have to be affecting her ability to access her education. Nevertheless, she could meet your state's definition and criteria, yes.

[Terabith]

2 minutes ago, PeterPan said:

They can give her an educational diagnosis of autism without a medical diagnosis, yes. If she meets the criteria used in your state, yes she can. I just read a study looking at what percentage of kids receiving an educational diagnosis then met the criteria for a medical diagnosis when they were cross-checked, and it was pretty high, like almost 90%. So yeah, if that opens doors, pursue that. It's basically just meeting the legal criteria. Find your state's definition and see if she meets the criteria. Now in an educational setting, those criteria have to be affecting her ability to access her education. Nevertheless, she could meet your state's definition and criteria, yes.

Yeah, I guess she might have a medical diagnosis of autism, since the psychiatrist has it in her records.  I don't know what the lines are for educational diagnosis are or if she qualifies.  It's just a possibility.

[PeterPan]

Well in our state there's a legal definition adopted by the state, and that seemingly boring definition (a sequence of things with commas) becomes the criteria. When the school whipped that out, I was like you're joking, right? But no, for real. So that would be one place to start. Your school could also have some habits of how they get there (a particular form, the ADOS, whatever). But just in general, look at your state's definition and see if she fits every point in it demonstrably.

[PeterPan]

https://www.specialeducationguide.com/disability-profiles/autism/  Just as an example, this page cites the IDEA/Federal definition, and the three components are verbal, non-verbal, and social. So if your state uses the federal definition (which some states do), then having significant effect in each of those three categories will get her there. Not all states use the DSM, or they may have state definitions are keyed to DSM4, which wouldn't be helpful, mercy. So it depends on your state.

[Terabith]

I'm not sure if it has an adverse effect on her education.  If you go down the DSM criteria, you're like, "Yup."  One interesting fact....she is seriously annoyed by the kids who bully other kids that she likes.  So she inserts herself in between the kid who is bullying and the kid who is being bullied and then attracts them to pick on her instead.  She doesn't care about what they say to her.  And then when they say mean things to her, she just matter of factly agrees with them.  "Yup.  And?"  

[Terabith]

14 hours ago, PeterPan said:

https://www.specialeducationguide.com/disability-profiles/autism/  Just as an example, this page cites the IDEA/Federal definition, and the three components are verbal, non-verbal, and social. So if your state uses the federal definition (which some states do), then having significant effect in each of those three categories will get her there. Not all states use the DSM, or they may have state definitions are keyed to DSM4, which wouldn't be helpful, mercy. So it depends on your state.

I'm not really sure if it affects her verbal skills.  I keep looking to see if she is lacking some subtle verbal area, but her language seems to be pretty solid.  There's a certain lack of reciprocity, but it seems to be based more on the fact that she just doesn't CARE most of the time rather than in a lack of ability to reciprocate.  Honestly, I think autism is probably the category that is the biggest "stretch" for IEP.  She definitely has the SLD going on, with spelling definitely below average.  Her math varies a lot on assessment.  And the anxiety is clear cut; whether that's OHI or ED, I don't know, and honestly, I'm not sure if it matters.  I think she probably is on the spectrum, but she's definitely level 1, and I think it's a bit of a stretch to say that it's affecting her ability to access her education.  Anxiety definitely impacts her ability to access her education, and her learning disabilities definitely require at least accommodations.  She would benefit from solid teachers that explain things clearly and are extremely explicit about expectations and procedures, but so would most middle schoolers.  

[PeterPan]

3 hours ago, Terabith said:

verbal skills.

Verbal includes narrative language, metalinguistics, inferences, etc. The CELF-Metalinguistics will catch issues in some of these kids and get them qualified under verbal. You can see samples of what it covers online. I think they'll use conversation under social. Definitely pragmatics will qualify under social. 

3 hours ago, Terabith said:

Honestly, I think autism is probably the category that is the biggest "stretch" for IEP. 

And yes, that's the difference between an educational and medical diagnosis. They can AGREE with you that it's autism and then say that the things that are specifically autism are not affecting her ability to access her education. Now honestly, school districts vary on that and some are more generous than others. There are school districts where if the dc meets the definition and the dc needs ONE THING, like say pragmatics (which could be done without calling it autism), then boom they're qualified with their disabling condition as autism. Schools just vary. 

The "don't care" stuff is your perspective taking, your social thinking. I agree, a dc who is mainstreaming successfully is more your level 1 support. It doesn't mean it's not significant, only that their support level is lower and that their ability to get through is higher. Some of these people will be astonishingly successful in the structure of school. The unfortunate thing is their employability stats will go right along with the rest of spectrum kids at that point and tank. It will take effort to get the "don't care" student enough transition services that she is employable and able to work in an area where she can either function (low enough stress) or find it interesting (reflecting a strong interest). That to me is the real question, that thinking long-term thing. You're nailing supports now and making it happen, so what do you need to happen 4 years from now or 8 after college? There's actually room for you to say that she's doing ok but that her social thinking is so rigid that you're concerned for her employability and you want her tested for pragmatics, absolutely! This is totally fair game.

[Terabith]

Yeah, I have concerns about employability, but I don't know how well founded they are or not.  She does have the ability to make herself do things she doesn't necessarily want to do.  What she says she wants to do is be a chef/ work in a restaurant.  Which is....not low stress, but it doesn't require college.  Which is good....don't have to worry about starting off with all the student loan debt.  She's also mentioned being an engineer, and honestly, from a temperament perspective, I think in some ways that would be lower stress (more engineers are kinda spectrumy/ more on her wavelength and it's less continuously social than being a chef), but I am not sure how well she'd do with the required higher math.  I THINK she could hold a job.  What worries me the most is the anxiety even more than the social thinking.  She knows the right things to say in terms of pragmatics.  And honestly, in some areas she shows very high pragmatic ability.  She's very good at inserting herself into other people's shoes, doing perspective taking.  She rocks inferences and idioms.  But, when the pastor tries to make small talk with her when we run into him at a restaurant after church, her eyes get wide and panicked and she refuses to speak to him.  That's the anxiety.  She won't ask for a refill, because anxiety.  But, while she would hate it, I think she could probably do a job like being a cashier, where social interactions are more predictable.  I definitely want her to get a job in high school.  I don't really care if my older one does, but I think she needs to so we have the data point of, "Can she hold a job?' 

[PeterPan]

I had my dd do career testing before she chose her major. She was saying things that she wanted but they didn't add up to what she really knew about herself and what we knew. 

Our technical college has summer programs for high schoolers, sort of camp/try on majors experiences. They have them for cooking, rescue, photography, all sorts of things. My dd did the cooking, and that was where we first realized her issues with noise were so significant. She loved it but would come home with literal migraines. It was a commercial kitchen, so it really stepped up the issues. So if she has sensory or noise issues *at all* I would strongly encourage you to get her into a setting like that so she can make sure it works for her physically. And it's a real bummer, because my dd is this kind of person who can make things happen. You could totally see her as a caterer, running a camp, anything, and she can't handle the noise from the equipment.

Her wide range of interests is fun. That's also just that high ability thing, sigh. There's some drift even once you get in the ballpark. Like my dd did the career testing which got her into a ballpark, and then as she tried classes she narrowed it down to an aspect. So it will evolve. I agree she could be good at math but maybe not want to do the engineering. If you want a laugh, I started off a science major, hopped around, played with math ed. I COULD DO the stuff, but I just wasn't really into it, didn't care. I went through the catalog, found what major let me take the classes I really wanted to take (foreign languages, linguistics, etc.) and got out in three years. 20 some years later, here I am, still using that linguistics stuff, go figure, lol. 

So yeah, majors are a funny thing. But would I work in the thing I studied? Nah. Things have changed. I'd have to go back and get another degree, a master's in something. Or I'd just work at Chick fil A. Like personally, if I had to work a job, I'd either do one-on-one where I could earn enough to do it on my own timetable ($100 an hour, intervention of some kind) or I'd work Chick Fil A. They smile and the work dynamics don't seem complicated. But yeah, if you listen to the Michelle Garcia Winner talks, that's what she's saying, that these kids are going to be comfortable where they're comfortable, irrespective of IQ. It sounds like you're really nailing that and being flexible.

Fwiw, it sounds like she has a lot of girl strengths. You might go ahead and get her a pile of books from the teen lists at Social Thinking, even though you don't have the issue. I think when the kid is self-identifying as on the spectrum, she's saying she's seeing differences at school. So even with her girl strengths, they're there. You might just give her those materials, even if it's only like 30% of the book that is useful. She can go through the pile and get the stuff that is useful to her. What I did with my dd was get her a huge stack and then she picked maybe 2 that had parts that were useful. The lists at ST are really good, very broad, and our library system, using ILL, had basically everything.

[Terabith]

One thing I'm excited about the high school for is they have a phenomenal vocational program.  They have a great culinary program, where if you complete it, you actually wind up with an industry certification.  Currently her plan is to take those classes, but obviously, if she takes it one year and hates it, she's not going to continue.  Which is fine.  But it's a great opportunity to explore some fields in a pretty low key way.  She's got some sensory issues, but I've never noticed one with noise.  She doesn't seem to have the auditory processing issues that your daughter has.  Hers are more subtle and along the lines of, "Stop sticking everything in your mouth; you're 13 already!"  Which...more appropriate in a kitchen than welding, for instance.  

She definitely has a lot of language strengths.  Interestingly, all of her friends are ADHD boys she plays D&D with.  Those are her most mutual friendships.  She hangs out with girls at school, and she gets along with them, but she doesn't have any desire to hang out with them after school.  And she has the strengths, but she also definitely has aut tendencies.  She doesn't CARE much about a lot of things, but she really uses that to good effect, as in the getting bullies to pick on her instead of kids who DO care.  Although, to be fair, hanging out outside of school doesn't seem to be something kids do anymore anyway.  My older dd is pretty darn NT, and that's not something she does.  Kids hang out online, but they don't seem to get together in person much outside of school/ activities.  

Career testing is definitely a good idea.  I want to do it, but probably will wait a couple years.  Seventh grade seems a bit early for that.  The Social Thinking book definitely looks beneficial, however.  

[PeterPan]

There's a reflex in their hands that connects to that mouthing. My ds was still doing that, and with a few weeks, maybe a month, of brushing his hands the mouth stopped completely. And literally it was just like a couple times a day I brushed his hands with various brushes, massaged them, stroked them, etc. The reflex is some kind of nursing reflex, so they hand does it's thing to stimulate the mouth to nurse. So you work the hands and the mouth part clears up.

You'll know if the brushing on the hands (on the palms) is worth doing because it will be ANNOYING to the hilt when you try. If she's like why are you doing this and it doesn't bug her, maybe don't bother. If she's shutting down the reaction but it bugs her at all, I would do it. Doesn't cost anything lol.

Edited April 1, 2019 by PeterPan

[Lawyer&Mom]

17 hours ago, Terabith said:

 But, when the pastor tries to make small talk with her when we run into him at a restaurant after church, her eyes get wide and panicked and she refuses to speak to him.  That's the anxiety.  She won't ask for a refill, because anxiety.

 

Won’t talk to the Pastor or can’t talk to the Pastor?  It might not just be anxiety.

Loss of communicative ability in socially stressful situations is very Autistic.  She might not be able to actually put the words together, or at least not nearly as well as she usually can.  Not that you or she would necessarily know this.  For years and years, I would just avoid these uncomfortable conversations, and thought I was just shy sometimes.  Only after I had kids, who just keep talking and talking to you, even after you look panicked, and even after a grown-up would have politely given up, did I realize I actually had difficulty speaking in these situations.  It was definitely an eye-opener!

I was a cashier in High School and enjoyed it.  It’s great social practice in a very structured environment.  I would totally recommend it.

 

 

 

[Terabith]

I don't know if it's a won't or a can't.  I know she doesn't like to order for herself in restaurants.  She will go up and ask for a refill at a place we frequent more or less every week, but only if someone else goes up with her.  She won't go up independently to request a refill.  It's definitely in the interactions with strangers or relative strangers that she appears the most odd and the most autistic.  There's always been a pretty high correlation with her anxiety and how autistic she looks.  I was shocked at the difference an SSRI made, honestly.  She immediately (within the first week of taking it) seemed more typical.  

It's very possible that her language short circuits during high anxiety situations.  Not sure how to tell if it's shyness or if it's inability.  

[Lawyer&Mom]

It probably doesn’t matter if it’s shyness or inability.  But just keep in the back of your mind that she may be dealing with more autism than you think.  (Autistic girls can really internalize their struggles.) Transitioning into college/independence may be more delicate than you expect.

 

 

[Terabith]

3 hours ago, Lawyer&Mom said:

It probably doesn’t matter if it’s shyness or inability.  But just keep in the back of your mind that she may be dealing with more autism than you think.  (Autistic girls can really internalize their struggles.) Transitioning into college/independence may be more delicate than you expect.

 

 

Oh, yeah....we have no illusions about that.  I figure the odds of her going away to college are about 80-20 against.  And the odds of her living independently on her own are probably 60-40 in favor of...but that's eventually.  I don't think she's going to be moving out at 18.  She's super smart, and she's passed the ADOS twice, and she's doing well in school now.  But independence is a whole other ball of wax.  I am personally hoping she winds up marrying her best friend, and also that said best friend winds up being rich.  

[Terabith]

Had the qualifying meeting.  Will write more later.  They were dismissive about significance of anxiety but she still qualifies for IEP based on math.  Not written expression because spelling doesn’t count and her writing fluency is above average.  Whatever.  They’re willing to keep her IEP.  

[Storygirl]

Well, that sounds mixed, but at least the IEP will remain. Although the testing is only repeated every three years, the IEP itself has an annual review. Next year's team may see things somewhat differently, as may the high school team, which will be comprised of different people. You may not end up fully satisfied with the IEP, but it can be revised along the way.

Too bad they don't recognize the anxiety. Although if you look on the positive side, perhaps it is having less effect at school than at home, which is good. My kids are "better" at school in some aspects, and I'm glad for that, though it makes it difficult to get the school to listen to concerns.

[PeterPan]

15 minutes ago, Terabith said:

They were dismissive about significance of anxiety

Then I would pursue private intervention for that. There's tons of great stuff out there with mindfulness based CBT, interoception work, books from Social Thinking, supplements you can take based on genetics, etc. My dd has recently added tyrosine and finally, finally some 5HTP to her mix and she's liking them. She's just doing a tiny bit on the 5HTP, just a 100mg time release once a day. She said a counselor told her the dopamine is the thing people don't think about, that it's really helpful for the need to pull it together feeling.

Whatever. I agree that's a good thing if it's not so significant that the school feels compelled to offer intervention for it. But still, if she feels like it's happening, offer her the intervention privately. You will not regret the intervention you make happen (assuming it's a good fit and you stop if the practitioner isn't a good fit, etc.), but you can regret NOT making it happen. She's at a great age now, with her ability to self-advocate kicking in. Good interventions work with that and are synergistic.

Edited April 2, 2019 by PeterPan

[Terabith]

She’s been on anxiety meds since she was five.  She was pretty much nonfunctional without them.  As in, it’s a good thing she was so precocious as a toddler, because she did not gain a single new skill between age two (when we moved) and age five (when she went on meds).  They saw the evidence of anxiety on her questionnaires and at the beginning of the year.  But their argument is that it’s normal for teens to freak out in a new environment and dealing with lockers for the first time.  I said, “It’s normal to be nervous.  It’s not really normal to lose the ability to speak and curl up in the fetal position under a desk.”   But whatever.  They acted quickly when she freaked out on them at the beginning of the year, and the supports they put in place fixed the problem.  I don’t care what we call it as long as the appropriate supports are in place for school.  I’m a little concerned about the mandatory end of year tests next year.  If she doesn’t pass them, she doesn’t get electives in high school.  And there’s one on homophones, that she very well may not pass.  But if that happens, we will just pull her.  The electives are the only thing that makes public school worthwhile.  

Apparently, a formula sheet is not allowed for IEPs because it’s not allowed for standardized tests.  Sigh.  Everything is driven by those. 

I need to do some research about CBT and stuff.  And raise the ADHD question with her shrink.  We’ve done counseling several times with no real progress and poor insurance coverage.  But she won’t do work with me.  I might need to get creative and see if there’s someone besides a counselor who can do this stuff.  We are doing therapy with my older kid, because she’s struggling with some depression.  Honestly, I find myself wondering how much of the anxiety is driven by her nonexistent working memory.  If you’re very smart but no matter what, you know you can’t remember anything....that’s got to have an impact on her anxiety.  

[PeterPan]

Yeah counseling by psychs I'm kinda so-so on. Have you looked into interoception? That whole idea of mindfulness, noticing your body, realizing what makes you feel good and when you're not feeling that way and how to get back there...

That end of year testing sounds like a mess.

It sounds like they're going in circles if she is diagnosed with anxiety, sees a pdoc for anxiety, has medications for anxiety, and the school is like oh the symptoms that look like anxiety aren't anxiety, lol. That's what the dispute process is for. I mean that's just getting bizarre. But if they're saying they don't want or need to do any intervention for it, that YOU have done everything she needs, well there you go. 

[Terabith]

They aren't arguing that she doesn't have anxiety.  They're saying it's not educationally relevant.  Which seems...odd to me, honestly.  Basically, because she's quiet and doesn't throw things, she doesn't qualify for emotional disturbance.  I guess because the only person it's disturbing is her?

I need to work on mindfulness for myself and for her.  And try to get her to do some interoception work.  But, ugh.  She's almost 14.  She has NO interest in doing anything I suggest.  

Edited April 2, 2019 by Terabith

[PeterPan]

You could join the FB group and see if anyone near you is doing it. I agree that doing it with someone else could go over better, sure.

[PeterPan]

17 minutes ago, Terabith said:

They aren't arguing that she doesn't have anxiety.  They're saying it's not educationally relevant.  Which seems...odd to me, honestly.  Basically, because she's quiet and doesn't throw things, she doesn't qualify for emotional disturbance.  I guess because the only person it's disturbing is her?

Yeah, they work themselves into funny pickles. My ds' placement in the school would be ED and they told us they didn't want to call it ASD because he didn't belong in an ASD classroom. I kid you not, lol. I mean seriously, as if kids don't mainstream and have labels. My lands. But yeah, they have the right to split hairs like that. 

I guess you'll see how it rolls! Hopefully she'll do really well. Hopefully they'll get enough supports in place that she does well on the testing too.

[Terabith]

There are no supports for the state required testing.  Apparently it's a legislative thing.....IEPs don't apply, other than sometimes for extra time.  And honestly, extra time wouldn't help.  She could write an essay, but she cannot, and no amount of studying will change it, learn homophones or which version of "there" belongs in which context.  It's a, "Hope for the best and pull her out of school if it doesn't work," situation, in which there are absolutely no other possibilities, because nobody is allowed to discuss anything else.  She has to take three this year, which should all go well (reading, math, science), five next year (including writing with the damned multiple choice about homophones), and a bunch are required for high school graduation.  

[PeterPan]

8 minutes ago, Terabith said:

multiple choice about homophones

Can she do some kind of visualization trick? Like you've seen the picture stories people make for times tables, right? Well what about that for homophones?

Maybe move? Of course I don't know where. I'm guessing our state is piling the tests on too. Fortunately we don't have to take them, but don't ponder what that means about autism and their hopes for a decent education, if we're exempt.

[Terabith]

We have tried SO MANY visualization tricks.  It's just not happening.  I'm convinced she just flat cannot learn that kind of thing.  Really high IQ, but we once tried 10,000 repetitions (over ten days) to try to get her to learn to spell the word "what" correctly.  We had done visualization/ Seeing Stars tricks.  Very multisensory....switched mediums of practice every ten repetitions.  Incorporated movement.   On the eleventh day, I asked her to write the word "what" and she spelled it "wut."  That was the day I decided there was no point.  Repetition and visualization and tricks DO NOT WORK.  

Moving is not an option.  Husband recently took new job and her older sister is doing well in high school.  And honestly, she doesn't want to move.  She's happy with her D&D group.  It's just school.  

If she fails and they try to take away her electives, we will just pull her out of school and either homeschool or go back to the private school.  Which would suck, because the public school has a vocational program for culinary that I'm counting on to get her employable AND if you do 11th and 12th grade at the high school, you get two years of free community college.  But I'm not going to force her to take math for three periods a day (and at the high school, periods are 90 minutes long).  

[Terabith]

Interestingly, the psych commented that she'd never had anyone score anywhere's close to as poorly on the spelling who didn't also have significant issues reading.  She was completely flummoxed that she was such a good reader and such a terrible speller.  

Honestly, she IS a terrible speller, but she's SO MUCH BETTER than she was.  In an objective, "Is it right or wrong?" thing, yes, she spells the words wrong.  But she gets SO CLOSE now.  It's like leaving the h out of chromatic.  I just can't worry about that level of misspelling.  She's close enough now that everyone can read what she is trying to say AND spellcheck works.  She'll still need an editor because of homophones issues (all those theirs and such), but eh....whatever.  

[Terabith]

Looking at subtests again.  That digit span of 5.  That seems REALLY low.  I mean, I know functionally she really struggles with working memory.  Anyone have numbers on what percentile that would be?  Is there any way to really build working memory?

[PeterPan]

4 hours ago, Terabith said:

Is there any way to really build working memory?

Absolutely not. And none of us would be like those weirdos flashing digit span cards, playing simon says games where the kid repeats and does increasing strings of commands, doing digit spans while clapping or tapping to the beat of a metronome, playing games like Ticket to Ride or A Fist Full of Coins, or the new visual memory workbook from RFWP/Kenneth Lane. Oh no, we wouldn't be weirdos like that.

Oops, that is us.   No seriously, yes there's TONS you can do!!! And it's FUN!!! And your gut says that building up these skills will help some things go better and help her compensate is spot on. Now were those numbers from *before* Wilson or after? Or this is your older and she did not do Wilson? I would have expected a dc doing Wilson to get a working memory bump from the methodology.

It's pretty easy to see where the real life breakdowns are occurring, because she's probably avoiding things that are big working memory drains, leaving people to assume it's personality, not the disability. Ticket to Ride is a HUGE memory drain because they have to plan out their strategies and hold the paths and needed cards in their heads. My dd had to write it all out, lol. 

I've done quite a bit of work with my ds, just because I was looking for tools to keep him functional while doing all this intervention. Like if writing is hard anyway, well it's 10X harder if you have a hard time holding your thoughts. So anyways, I usually try to work on it a VARIETY of ways. Reality is you're only going to maintain beyond your intervention what you actually use. However if she's able to begin doing activities that require more working memory, then it might be naturally reinforced. So there's a level you can get to that is fun but beyond everyday life and then there's the level that's like ok our spelling or game night or whatever goes better with this amount.

So mainly just do it a variety of ways: auditory, kinesthetic, visual, with distractions, etc. Maybe do like 10 minutes a night but do 2 1/2 minutes each of 4 ways, kwim? Shake it up like that. See what is weak on her. Our VT place had dd use her working memory for practical strategies with visualization. So like visualize your grocery list as a tree or by seeing the building. But you're trying to get it into function. And adding the distractions with a metronome is to make it stronger. You can do n-backs and twists like she says the last digit of the PREVIOUS two digit number you said. 

23

42 (she says 3)

37 (she says 2)

 that kind of thing

Or she can visualize and then repeat them backward

2437 (she says 7342)

Just see where she is and don't drive her crazy

I did a lot with having ds repeat a sequence of commands because I wanted him to be able to get ALL THE STEPS. 

tap your head twice, jump three times, turn around once, hop.

You can turn on a radio or tv, and you can do anything with a metronome set to 54bpm. Heathermomster has posted instructions and I think EG on how to do movements with the metronome. 

Cogmed is software with some research base behind it. They put the research on their site, so I guess look into it and see what you think. It's a little $$ but it hits EF and working memory and for some kids gives a function boost. You're only going to maintain what you use, but sometimes the overall effect is good voodoo. It's in the won't hurt if you can afford it camp. There are other software options too and you'll find threads about them. There are some apps like Lumosity. Anything in that brain training realm will be bringing in working memory. So you can spend $0-5 or $1500 and make something happen, lol.

Edited April 6, 2019 by PeterPan

[Terabith]

These are the numbers AFTER Wilson.  Before Wilson, her digit span score was a three.  She can SOMETIMES hold three numbers in her memory to repeat back.  She cannot repeat backwards even a two digit number.  At all.  (Back when we were doing vision therapy, we did some work on this.  But we couldn't get to a low enough level for her to ever get any success.)  I've looked at the Brain Training apps, but they all start at a level that's too high.  Metronomes are way out.  She has a ptsd like reaction to the sound of anything repetitive like that.  No timers, anything that ticks.  If we had unlimited funds, I think Learning Rx would be helpful, but it's so pricey and so intensive and the stats are not conclusive.  It seems to work really well for some people and not well for others.  We also have never had luck with board games, because the anxiety makes her refuse them.  I LOVE Ticket to Ride.  It's like my favorite game of all time, and my working memory isn't much better than hers.  It's definitely challenging.  I'll have to try to bribe her to play with me.  

[PeterPan]

That sounds pretty structural. I definitely would not stress her out, because stress chemically impeded learning. 

It may be that the 5 you got to with Wilson is sustainable, an amount she uses in everyday life, kwim? If you take it higher and it's more than what she needs, she'll just lose it.

[Terabith]

Honestly, right now she really IS pretty functional for what she wants to do.  I'm a little bit nervous about how driving is going to go, with all the quick decisions, anxiety, processing speed, all that jazz.  But, she's 18 months out from even being eligible for a permit, and I really have no idea how it will go.  It might be fine!  I'm willing to consider ADHD meds for driving, if it will make her safer, but I honestly don't know if it's needed.  She can play video games now, and she really couldn't do that before Wilson.  Is it weird to think of video games as therapy?  They're HARD for her.  There aren't many she's willing to play, but they're something I tend to encourage, because they are so hard.  I figure if it's that hard, it's probably stretching her in a useful way.  I've always struggled with them, too.  We're at this weird juncture where the next things coming up are driving and part time jobs, but we're a couple years away from either of those.  So I'm trying to figure out what she needs to be successful, but I honestly don't know and probably won't until she tries.  

[PeterPan]

21 minutes ago, Terabith said:

she's 18 months out from even being eligible for a permit,

Yeah, the stats are bad for unmedicated ADHD. Waiting helps too.