Neuropsych testing and cooperation

[akafred]

In Fall 2016 (right about a year ago), I paid OOP for a psychoeducational evaluation from a private psychologist. She did an observation at DD's school, followed by two mornings of testing, then followed up at DD's school (more in a minute), then did her report. DD (7 at the time) was extremely uncooperative. She literally climbed the bookshelves in the small office, did "gymnastics" hanging under the desk, cried a lot, demanded a lot of breaks for water etc, and pushed back in every way possible. The results were very inconclusive. The testing psych basically pushed only enough to confirm we weren't looking at ID. She could not say for sure if DD has any SLDs, has a high, low, or average IQ, or anything else. In the case of dysgraphia she said it was too early. In the case of dyslexia she said DD's poor spelling was a red flag but could provide no more input, but didn't seem overly concerned. But it has been a year, and DD's academics are not really advancing. She's a kid who excelled early but plateaud early too. She has dx of SPD, ADHD, and anxiety. At one point DD convinced the tester she had never seen a minus sign. The tester readminstered some tests at school because she was more adjusted there. In some cases she showed improvement. In other cases she didn't.

I'd like to pursue neuropsych testing, but IDK if we might end up in the same boat with not cooperating. Actually worse because they do testing in one long DAY instead of breaking it up into two testing days.

Anyone have experience with an uncooperative test subject? When I called the receptionist and asked how they would handle that, she said, "He simply wouldn't allow it." Hahahahahahaha suuuuuure ok. The tester we used has 35 years experience.

[mamaturtle]

I think we had one evaluation when DS was 4 and he was at his worst. I can't remember why we did it.

He didn't sleep well and was very clingy to me. He didn't want to do any of the tasks given to evaluate. The facility did give us breaks and allowed us to bring our own food or snacks and it was all day. The funniest part was when the lady that was doing the evaluation asked "point to the cat with no eyes." DS pointed to the cat with no legs and said that cat is broken." They gave him the label of globally delayed along with ASD. I did not agree with the globally delayed diagnosis part of it afterwards.

DS has had several evaluations there after and they still continue the same ASD diagnosis both medically and educationally.

I think it was on a Special Needs message board that I have been following all these years that said it was better to see the child at his worst than his best so that way proper interventions can take place. You just can't guarantee perfect scores with odds of poor sleep like in DS's case.

Did they say why they can't break it up in two appointments?

Ask the reception if they will allow breaks and food from home for your DD since it is an all day thing.

Would your SO be able to attend? A lot of times the person performing the evaluations may have several surveys and questionnaires for the parents to fill out. You could fill out one while your SO fills out another survey and the evaluator can give tasks to your DD to do. This may cut your time so it will not be so long.

I think I did them all because I pay more attention to the faults and DH use to stretch the truth to no diagnosis details in the beginning.

[akafred]

It isn't better to see them at their worst when their worst doesn't allow them to cooperate enough to get a full picture though. Basically we spent $1500 and got "too early to say", "not enough cooperation to say", etc. I don't want to waste everyone's time again, because that is what it was IMO.

We always fill out the paperwork in advance. DH attended last time. I did with him the first day and he was alone the second day. The current possible tester said they have too many appointments to break it up. I don't have a great feeling just talking to the receptionist. They seem like a 30 minute lube place.

[waverly]

I don't know honestly. My sister finally took my nephew, and he refused to enter the building.

She came out with some parenting advice, most she had tried before although perhaps they will be more consistent now. And I guess it was maybe a one time appointment, so basically nothing came of it. I don't know if he just sat in the car outside the whole time?- He is older.

I was told once that it was fine that they didn't go in or participate as that can mean something too, I think they were alluding to ODD. But in any case even if the psych had diagnosed him with ODD, which I don't think he did, it was still not helpful.

Based on DS's PT and OT and Ortho appointment, we may end up in neurology, and I plan to do that before I do anything psych related. At the end of the day I would go somewhere else if you don't have a good feeling about it.

[akafred]

There isn't somewhere else.

[waverly]

Oct 30, 2017 16:20:24 GMT -5 akafred said:

There isn't somewhere else.

Do you have to pay OOP for this one or it covered by insurance?  If it is a small price, then I guess just go and see how it goes. And if it isn't working just say hey this isn't working why don't we stop here or re-schedule.  

[akafred]

Oct 30, 2017 16:55:11 GMT -5 waverly said:

Oct 30, 2017 16:20:24 GMT -5 akafred said:

There isn't somewhere else.

Do you have to pay OOP for this one or it covered by insurance?  If it is a small price, then I guess just go and see how it goes. And if it isn't working just say hey this isn't working why don't we stop here or re-schedule.  

Psychoeducational testing is not covered by insurance and was OOP. Neuropsych testing IS covered by insurance. But there is only one in network. I actually suspect it is essentially the same testing with a different label; not positive though.

[auntie]

If she can't/won't cooperate, it's probably not worth re-doing. Their reasoning will be she has the skill set she brings to the table. While it would be useful if you had an idea about her rough IQ, if she has other issues preventing her attending to school work/testing it won't really matter what that number is. (i'm feeling kind of grumpy; the son of a friend of mine- a kid with a 140+ IQ is going into adult foster care because he can't/won't transition in any way toward adulthood- I am devastated for them both)

A neuropsych and a psychoeducational eval do overlap a bit. The going rate for a neuropsych when DS was little was about $1500- the psychoeducational was at least twice that. I hear the latter is over $6K now. Our insurance picked up a portion of both.

[akafred]

Irk the cost of neuropsych. The psychoeducational eval was $1500. A private SN school charges $2500. So not as bad here.

It's not that I need an IQ number, just that they couldn't tell me one because she was not cooperative. I am more concerned about something like SLD, which again she wasn't able to attend enough to get enough out of her to show if it can be ruled out or in.

I was afraid of that answer though, that it likely isn't worth repeating.
I'm so sorry for your friend, auntie. That completely sucks.

[waverly]

If you are specifically looking for educational learning disabilities, can you have her tested through the public school system? They may have tests more centered on the topics you are interested in and in shorter segments. I know you are in private and not sure how your public schools are there. I think you can get an IEP and still send to private school, maybe...

Maybe it's District dependent as we have private school parents attend the public school special needs group and talk like they have an IEP here. Or maybe they are ISPs.

[akafred]

Testing is possible through the public school system but I don't have delusions that she would cooperate more for them than anyone else. Most likely for the kind of services she needs, she wouldn't be eligible through the school system. I do have an audiologist appt to check for CAPD but it is really grasping at straws. I may just need to have some private tutoring and skip the official dx. There is apparently a really good dyslexia tutor that will come to her school. Of course it is over 50% of the cost of her tuition so may not be feasible at the moment.

[waverly]

I know auntie had some good reading program suggestions for dyslexia. We talked about it in an earlier post.

[akafred]

There isn't a Lindamood Bell here either. I checked the other day. We would have to travel 4 hours for testing and then do a summer program that is effectively impossible because it is incompatible with summer camps and we wouldn't have child care...assuming we could pay for it.

Found out today my pediatrician's practice is moving 25 min further away. They are already 45 min away without traffic. Maybe doable for an occasional visit but not if we have to pick up paper scripts.

[auntie]

It's a difficult situation. Is she not keeping up with her peers? 

IME, even good districts do a less than ideal job with evaluations for SLD because they are really difficult to tease out even with a cooperative student.

DS had a top of the line psychoeducational test with a specialized teacher at the end of first (age 7 1/2)- this was the testing that is now $6K. The testing took place on 2 Wednesday afternoons with a parent meeting on the 3rd Wednesday. Some of the tests were proprietary products created by the owner of the school while others were a mix of standard tests for directionality, visual, spatial and auditory processing, vocabulary, working memory and current achievement. The tests were given by a specialized teacher and reviewed by a developmental neurologist. This was a really interesting process- the teacher was not only able to describe DS as a student in the classroom and at home- where he was stronger and where he'd struggle- she was able to predict what he'd "outgrow", what was fixable and what he'd need to work around as he matured as a student with freakish accuracy. 

DS's psychologist did a quick and dirty WISC/WRAT for us twice. Once when we were looking for an LD school as the one that did the comprehensive testing was not my first choice and once a few years later. It's said that this combination can hint at LD issues, but they won't really tease out what is going on. DS did cooperate because he was working with his regular psychologist who knew him well. That said, the psychologist didn't feel the numbers were relevant- DS comes off as brighter than the slightly above average score he gets- I think because of his strong verbal skills. His Aspergers drives down his PIQ and VIQ takes a hit because of his dyslexia giving a FSIQ that is lower than the psychologist expected- because these two numbers are close, he does not have the 1+ std dev spread between PIQ and VIQ one would see in either SLD or ASD despite having both. 

The school psych's testing was truncated because we shared the stuff we had from both the private school and the psychologist (who happens to be the district's ASD consultant). They looked more at current academic levels and behavioral/emotional development as it would impact him as a student. TBH, some of the most important testing we did were things like the BASC and Vineland because they allowed me to see his behavior in the context of where he was developmentally. 


Sometimes a bright student will have developed go arounds that mask the issue. And sometimes schools do not consider conditions like SPD or CAPD to be educationally relevant; those that do might code them under OHI rather than SLD. 

You could ask the LEA to do a MFE of all areas of suspected disability, but TBH unless she enrolled in one of their schools it's likely to be a cursory look at best. Schools don't put a best effort on evals without a stake in the student since they know their suggestions won't be taken up by the private or parochial school the child attends. 

SLD is generally held to be a situation where the intellect is available to learn but there's a glitch somewhere that impacts it. Without a reliable IQ test, it's hard to make a SLD dx. 

That said, how is she doing academically? Is she meeting grade level expectations? 

Could she be one of those average but precocious kids who out perform their peers early on but settle into the 50th percentile but the end of the primary grades?

Sometimes what looks like an LD is really a poor fit between student and curriculum. Some kids don't learn easily with whole language reading or spiraling math programs. Do you know what they use? I would hesitate to hire a tutor via the school just as I wouldn't hire "their" SLP or OT. 

Sometimes personality and likes/dislikes play into a student becoming strong in an area that is easy/fun if they are given some discretion in the structure of the day. Before you start on auntie hates Montessori, this can be a problem in any classroom where free choice is a carrot- DS's teachers allowed him to select books for reading which led to comprehension issues because he never chose fiction where another kid might blow through math to have time for independent reading. 

For a kid who is in school all day, I would hesitate to add a tutor. And I probably wouldn't hire the one that comes to the school for a fee- private schools that bring in SLPs, OTs and reading specialists are a pet peeve of mine- when money enters into education things can get sketchy.

I would change schools before adding a tutor or trial a summer session at an LD school. I did change schools. It was hard for me to accept that the first place I chose wasn't the right fit because it really appealed to me personally and the LD/lab school was so clinical and un-fun looking. (boring white walls, no art or manipulatives in the classrooms, a tiny playspace they rarely got to use. FTR, I didn't willingly pick the public school he attended either- I wanted to send him to a different and wonderful LD lab school and then back to his first school through 8th, but he hated it and blew off the visit. Could you try a summer session at the LD school to see if she does better there? 

[auntie]

ETA: I would probably find a new practice just because you already spend so much time in the car and when a kid is sick or hurt- driving sucks. That said, maybe your pedi can mail you the scripts. DS's dev pedi and his current psychiatrist would both snail mail them for him.

[waverly]

Not much more to add except I had to change pediatricians due to traffic and driving. They were an hour plus away through heavy traffic.

I don't think current pedi is as up to date in research but I have all my specialits in place. He is good/ average and if I have to keep looking for answers I ask the other doctors in our team. It's been so good time and stress level wise not to battle traffic.

[akafred]

Oct 31, 2017 7:37:20 GMT -5 auntie said:

It's a difficult situation. Is she not keeping up with her peers?

*Kind of. She isn't behind, yet, or not very behind. But she isn't significantly progressing. She started first way ahead and has very much plateaud. She prefers to work behind, which is a function of anxiety and perfectionism I am sure. My main concern is that this is third grade. Expectations are about to jump and she is still clinging to first and second grade work in some subjects. A lot of this seems to be anxiety. For example she did better academically last year than this year, and she has mentioned a few years that one or more of the first graders think she is stupid. So I think she is working behind because she wants to be better than the "know it all" first graders instead of struggling with work at her grade level. I am mainly concerned with not losing more ground.

*Right now we just finished "Wonder." Well, *I* just finished. It is a bit above her level so I am reading it to her. For weeks she complained every day about that book. She hated it, but I pushed through. She picked out a "Guardians of the Galaxy" novel to read next...and that is fine but we usually do a book where I read to her and then alternate with a book she reads or we alternate pages. So now she wants to read "Auggie and Me" instead of the Guardians book. She claims it is because she just LOVES Auggie. I strongly believe it is because she doesn't want to have to read. Since "Wonder" took most of the school year so far to read, she really hasn't read to me in months.

IME, even good districts do a less than ideal job with evaluations for SLD because they are really difficult to tease out even with a cooperative student.

*Agree, I don't see much benefit going that route unless we were to move toward DD attending public school.

DS had a top of the line psychoeducational test with a specialized teacher at the end of first (age 7 1/2)- this was the testing that is now $6K. The testing took place on 2 Wednesday afternoons with a parent meeting on the 3rd Wednesday. Some of the tests were proprietary products created by the owner of the school while others were a mix of standard tests for directionality, visual, spatial and auditory processing, vocabulary, working memory and current achievement. The tests were given by a specialized teacher and reviewed by a developmental neurologist. This was a really interesting process- the teacher was not only able to describe DS as a student in the classroom and at home- where he was stronger and where he'd struggle- she was able to predict what he'd "outgrow", what was fixable and what he'd need to work around as he matured as a student with freakish accuracy.

*That sounds incredible, and worth every penny. Also not available probably. 

DS's psychologist did a quick and dirty WISC/WRAT for us twice. Once when we were looking for an LD school as the one that did the comprehensive testing was not my first choice and once a few years later. It's said that this combination can hint at LD issues, but they won't really tease out what is going on. DS did cooperate because he was working with his regular psychologist who knew him well. That said, the psychologist didn't feel the numbers were relevant- DS comes off as brighter than the slightly above average score he gets- I think because of his strong verbal skills. His Aspergers drives down his PIQ and VIQ takes a hit because of his dyslexia giving a FSIQ that is lower than the psychologist expected- because these two numbers are close, he does not have the 1+ std dev spread between PIQ and VIQ one would see in either SLD or ASD despite having both. 

The school psych's testing was truncated because we shared the stuff we had from both the private school and the psychologist (who happens to be the district's ASD consultant). They looked more at current academic levels and behavioral/emotional development as it would impact him as a student. TBH, some of the most important testing we did were things like the BASC and Vineland because they allowed me to see his behavior in the context of where he was developmentally. 


Sometimes a bright student will have developed go arounds that mask the issue. And sometimes schools do not consider conditions like SPD or CAPD to be educationally relevant; those that do might code them under OHI rather than SLD. 

You could ask the LEA to do a MFE of all areas of suspected disability, but TBH unless she enrolled in one of their schools it's likely to be a cursory look at best. Schools don't put a best effort on evals without a stake in the student since they know their suggestions won't be taken up by the private or parochial school the child attends. 

SLD is generally held to be a situation where the intellect is available to learn but there's a glitch somewhere that impacts it. Without a reliable IQ test, it's hard to make a SLD dx. 

*Sticky wicket.

That said, how is she doing academically? Is she meeting grade level expectations? 


Could she be one of those average but precocious kids who out perform their peers early on but settle into the 50th percentile but the end of the primary grades?

*Could be. And I am ok with that if it is so. But my gut says it isn't. My gut says she is struggling to keep up at this point and her intellect should make this much easier for her than it is. She picks some things up soooo fast. She has incredible problem solving skills in some ways. But she is not showing it academically. And that is ok...if that is all it is.

Sometimes what looks like an LD is really a poor fit between student and curriculum. Some kids don't learn easily with whole language reading or spiraling math programs. Do you know what they use? I would hesitate to hire a tutor via the school just as I wouldn't hire "their" SLP or OT. 

*They use phonics with emphasis on phonemics. Just to clarify, the school doesn't provide or offer tutors or other professionals. Several years ago they had a student who had this LD tutor (turns out she is a former Montessori teacher actually) come into the school to help their son. Just sonhappened to be DD's school. If I did hire her, it would be someone I arrange for independently and the school would just allow her to come for pull outs. But that is not likely to happen right now.

Sometimes personality and likes/dislikes play into a student becoming strong in an area that is easy/fun if they are given some discretion in the structure of the day. Before you start on auntie hates Montessori, this can be a problem in any classroom where free choice is a carrot- DS's teachers allowed him to select books for reading which led to comprehension issues because he never chose fiction where another kid might blow through math to have time for independent reading. 

For a kid who is in school all day, I would hesitate to add a tutor. And I probably wouldn't hire the one that comes to the school for a fee- private schools that bring in SLPs, OTs and reading specialists are a pet peeve of mine- when money enters into education things can get sketchy.

*It isn't a school-offered tutor, see above. The benefit would be the tutor would come to school so DD wouldn't have "extra" school time, it would just replace some work time during the day. The detriment is the cost, of course, and I would be less likely to see and judge the progress, which makes me feel uncomfortable about it.

I would change schools before adding a tutor or trial a summer session at an LD school. I did change schools. It was hard for me to accept that the first place I chose wasn't the right fit because it really appealed to me personally and the LD/lab school was so clinical and un-fun looking. (boring white walls, no art or manipulatives in the classrooms, a tiny playspace they rarely got to use. FTR, I didn't willingly pick the public school he attended either- I wanted to send him to a different and wonderful LD lab school and then back to his first school through 8th, but he hated it and blew off the visit. Could you try a summer session at the LD school to see if she does better there? 

*The LD school as a full time school is not an option. It is 4 times what we pay for DD now and way out of reach. But they have summer sessions for ADHD intensive and reading intensive courses. They are quite pricey though, much more than their normal summer camp prices (we usually enroll DD 2-3 sessions each summer because I trust that they are "safe" with her needs unlike unfortunately some camps). And I hesitate to do summer intensives for academics because of the same reason you advise against tutoring. I want summer to be more carefree and a release of pressure. This is why I choose camps instead of sending her to school year round. Everyone needs a break. Certainly we can see how this year goes and do something (SN school summer intensive, or LMB summer program, or even tutoring or some other option) over the summer. No real rush, I just don't want to let her slip behind. And I just really feel like we are missing a piece of the puzzle, and I want to help her.

[akafred]

Oct 31, 2017 7:39:21 GMT -5 auntie said:

ETA: I would probably find a new practice just because you already spend so much time in the car and when a kid is sick or hurt- driving sucks. That said, maybe your pedi can mail you the scripts. DS's dev pedi and his current psychiatrist would both snail mail them for him.

Thankfully DD's time in the car has dropped dramatically since we moved close to the school over the summer. But yes, I think this is too far. Maybe it is a good thing in the end, and maybe we can find a better "team" now. But for now it feels like a big blow.

[auntie]

Oct 31, 2017 10:49:10 GMT -5 akafred said:

Oct 31, 2017 7:37:20 GMT -5 auntie said:

It's a difficult situation. Is she not keeping up with her peers?

*Kind of. She isn't behind, yet, or not very behind. But she isn't significantly progressing. She started first way ahead and has very much plateaud. She prefers to work behind, which is a function of anxiety and perfectionism I am sure. My main concern is that this is third grade. Expectations are about to jump and she is still clinging to first and second grade work in some subjects. A lot of this seems to be anxiety. For example she did better academically last year than this year, and she has mentioned a few years that one or more of the first graders think she is stupid. So I think she is working behind because she wants to be better than the "know it all" first graders instead of struggling with work at her grade level. I am mainly concerned with not losing more ground.

*Right now we just finished "Wonder." Well, *I* just finished. It is a bit above her level so I am reading it to her. For weeks she complained every day about that book. She hated it, but I pushed through. She picked out a "Guardians of the Galaxy" novel to read next...and that is fine but we usually do a book where I read to her and then alternate with a book she reads or we alternate pages. So now she wants to read "Auggie and Me" instead of the Guardians book. She claims it is because she just LOVES Auggie. I strongly believe it is because she doesn't want to have to read. Since "Wonder" took most of the school year so far to read, she really hasn't read to me in months.

Wonder is a 790 Lexile book which puts it on the higher end of 3rd grade; the publisher deems it appropriate for 3rd-7th ages 8-12. Auggie has a lower Lexile at 680 but still 3rd grade same age group. When you do reading is this independent? It sounds like maybe you are doing a shared reading thing? 

DS was a reluctant reader and well behind classmates early on. I read to him every night until he started high school but that was entertainment- not part of his work. I read Harry Potter while he chugged through Frog & Toad, Magic Treehouse, Hatchet, etc. on his own.  

IME, even good districts do a less than ideal job with evaluations for SLD because they are really difficult to tease out even with a cooperative student.

*Agree, I don't see much benefit going that route unless we were to move toward DD attending public school.

Since Char is unlikely to be asked to leave, you don't really need a Plan B that includes a recent eval that would allow you a seamless transition to public school. I needed that net.

DS had a top of the line psychoeducational test with a specialized teacher at the end of first (age 7 1/2)- this was the testing that is now $6K. The testing took place on 2 Wednesday afternoons with a parent meeting on the 3rd Wednesday. Some of the tests were proprietary products created by the owner of the school while others were a mix of standard tests for directionality, visual, spatial and auditory processing, vocabulary, working memory and current achievement. The tests were given by a specialized teacher and reviewed by a developmental neurologist. This was a really interesting process- the teacher was not only able to describe DS as a student in the classroom and at home- where he was stronger and where he'd struggle- she was able to predict what he'd "outgrow", what was fixable and what he'd need to work around as he matured as a student with freakish accuracy.

*That sounds incredible, and worth every penny. Also not available probably. 

Many pediatric teaching hospitals offer these. Some large university centers do as well. 

DS's psychologist did a quick and dirty WISC/WRAT for us twice. Once when we were looking for an LD school as the one that did the comprehensive testing was not my first choice and once a few years later. It's said that this combination can hint at LD issues, but they won't really tease out what is going on. DS did cooperate because he was working with his regular psychologist who knew him well. That said, the psychologist didn't feel the numbers were relevant- DS comes off as brighter than the slightly above average score he gets- I think because of his strong verbal skills. His Aspergers drives down his PIQ and VIQ takes a hit because of his dyslexia giving a FSIQ that is lower than the psychologist expected- because these two numbers are close, he does not have the 1+ std dev spread between PIQ and VIQ one would see in either SLD or ASD despite having both. 

The school psych's testing was truncated because we shared the stuff we had from both the private school and the psychologist (who happens to be the district's ASD consultant). They looked more at current academic levels and behavioral/emotional development as it would impact him as a student. TBH, some of the most important testing we did were things like the BASC and Vineland because they allowed me to see his behavior in the context of where he was developmentally. 


Sometimes a bright student will have developed go arounds that mask the issue. And sometimes schools do not consider conditions like SPD or CAPD to be educationally relevant; those that do might code them under OHI rather than SLD. 

You could ask the LEA to do a MFE of all areas of suspected disability, but TBH unless she enrolled in one of their schools it's likely to be a cursory look at best. Schools don't put a best effort on evals without a stake in the student since they know their suggestions won't be taken up by the private or parochial school the child attends. 

SLD is generally held to be a situation where the intellect is available to learn but there's a glitch somewhere that impacts it. Without a reliable IQ test, it's hard to make a SLD dx. 

*Sticky wicket.

That said, how is she doing academically? Is she meeting grade level expectations? 


Could she be one of those average but precocious kids who out perform their peers early on but settle into the 50th percentile but the end of the primary grades?

*Could be. And I am ok with that if it is so. But my gut says it isn't. My gut says she is struggling to keep up at this point and her intellect should make this much easier for her than it is. She picks some things up soooo fast. She has incredible problem solving skills in some ways. But she is not showing it academically. And that is ok...if that is all it is.

I have a niece on my husband's side like this. She was such a bright and sparkly kid early on- in 2nd grade she organized a neighborhood 5K and raised $2K for the local childrens hospital for shits 'n' giggles. But she struggled mightily with academics. She was the gently nurtured daughter of a physician who only hung with similar kids from her neighborhood. By middle school her friends were all tracked in advanced classes so her parents sent her to a tiny Christian school where academics were not as prominent a community value. I suspect she's got dyslexia- I used to think all but one of my MIL's grandchildren had dyslexia until the outlier confessed she has an adult dx as well. 6 kids- 3 dads and 4 different mothers.

Sometimes what looks like an LD is really a poor fit between student and curriculum. Some kids don't learn easily with whole language reading or spiraling math programs. Do you know what they use? I would hesitate to hire a tutor via the school just as I wouldn't hire "their" SLP or OT. 

*They use phonics with emphasis on phonemics. Just to clarify, the school doesn't provide or offer tutors or other professionals. Several years ago they had a student who had this LD tutor (turns out she is a former Montessori teacher actually) come into the school to help their son. Just sonhappened to be DD's school. If I did hire her, it would be someone I arrange for independently and the school would just allow her to come for pull outs. But that is not likely to happen right now.

Do you know the name of the reading program? Are the teachers trained in phonics? Phonics sort of fell out of favor years back and a whole generation of teachers graduated without any real practical knowledge of how to implement it. 

Sometimes personality and likes/dislikes play into a student becoming strong in an area that is easy/fun if they are given some discretion in the structure of the day. Before you start on auntie hates Montessori, this can be a problem in any classroom where free choice is a carrot- DS's teachers allowed him to select books for reading which led to comprehension issues because he never chose fiction where another kid might blow through math to have time for independent reading. 

For a kid who is in school all day, I would hesitate to add a tutor. And I probably wouldn't hire the one that comes to the school for a fee- private schools that bring in SLPs, OTs and reading specialists are a pet peeve of mine- when money enters into education things can get sketchy.

*It isn't a school-offered tutor, see above. The benefit would be the tutor would come to school so DD wouldn't have "extra" school time, it would just replace some work time during the day. The detriment is the cost, of course, and I would be less likely to see and judge the progress, which makes me feel uncomfortable about it.

I see. I wouldn't be interested in a tutor who didn't have OG or LMB training. Not wild about Wilson. 

I would change schools before adding a tutor or trial a summer session at an LD school. I did change schools. It was hard for me to accept that the first place I chose wasn't the right fit because it really appealed to me personally and the LD/lab school was so clinical and un-fun looking. (boring white walls, no art or manipulatives in the classrooms, a tiny playspace they rarely got to use. FTR, I didn't willingly pick the public school he attended either- I wanted to send him to a different and wonderful LD lab school and then back to his first school through 8th, but he hated it and blew off the visit. Could you try a summer session at the LD school to see if she does better there? 

*The LD school as a full time school is not an option. It is 4 times what we pay for DD now and way out of reach.

You might want to look at how the tuition could impact your federal taxes as a medical expense. We paid for DS's lab school by maxing out our FSA and deducting tuition and mileage as a medical expense which took a lot of the sting out the price tag. This could be done for summer sessions as well. Some schools have scholarships available. It worth mentioning that many LD schools are set up so that the students get intensive remediation over 2-4 years, so it isn't as if you are choosing a $30K/year school for the next 9 years. DS spent 3 summers and 2 academic years at his lab school. One of our carpool kids spent 3 academic years (did therapeutic resident camp each summer) and the other spent 4 years and was asked to leave because the program didn't work for him. 

But they have summer sessions for ADHD intensive and reading intensive courses. They are quite pricey though, much more than their normal summer camp prices (we usually enroll DD 2-3 sessions each summer because I trust that they are "safe" with her needs unlike unfortunately some camps). And I hesitate to do summer intensives for academics because of the same reason you advise against tutoring. I want summer to be more carefree and a release of pressure. This is why I choose camps instead of sending her to school year round. Everyone needs a break.

Even with year round school, there are breaks built into the calendar. DS went year round from 1st-4th and then did ESY until 7th. By high school he returned to band camp a month before the start of school. Busy is good. I don't think my kid needs a 10 week break. YMMV. For us it meant taking advance of an opportunity to strengthen emerging skills and avoid the cycle of regression and recoupment which is damning for a student who is already behind peers. 

Certainly we can see how this year goes and do something (SN school summer intensive, or LMB summer program, or even tutoring or some other option) over the summer. No real rush, I just don't want to let her slip behind. And I just really feel like we are missing a piece of the puzzle, and I want to help her.

I hope you can figure it out. 

[akafred]

THis is Charlotte to a tee:
www.davidsongifted.org/Search-Database/entry/A10435

Especially this part:

"In addition to difficulties with written expression and spelling, children with stealth dyslexia often show persistent, though subtle, difficulties with reading. Despite the appearance of age-appropriate reading comprehension on routine classroom assignments or even standardized tests, careful examination of oral reading skills almost always reveals persistent difficulties with word-for-word reading. These deficits usually result in subtle word substitutions or word skips; and they can result in significant functional problems, especially on tests. We frequently see children who consistently show good comprehension reading lengthy passages or even long books, yet who significantly under-perform or even fail written tests of reading comprehension because they have difficulty reading short test questions or multiple-choice answers.

This seemingly paradoxical difficulty reading short passages can be better understood by considering the nature of the reading difficulties children with stealth dyslexia usually have. As mentioned earlier, these children typically show difficulties with word-by-word reading, skipping words occasionally and making word substitutions. When reading longer passages, they can often use their excellent higher-order language skills to fill in or correct errors in word reading, drawing on the redundancy and contextual cues that are usually available in longer passages. However, short passages contain fewer contextual cues. They have less redundant content, and they often have more condensed syntax, providing fewer means of correcting individual word errors. Therefore, the likelihood of errors increases as passages decrease in length."

So let's suppose we are looking at dyslexia here... given what you know about Charlotte's testing history and additional needs (ADHD etc), what would be the best route for me to go here in terms of getting a dx as well as interventions or treatments? auntie. I wouldn't even mind traveling if I thought it would yield results. But I am afraid a big box type eval will not be fruitful; either they will miss her more subtle cues or she will not cooperate enough to even get that far...

[auntie]

Nov 1, 2017 8:31:16 GMT -5 akafred said:

THis is Charlotte to a tee:
www.davidsongifted.org/Search-Database/entry/A10435

I would be take anything I read on a site for profoundly gifted individuals with a grain of salt- such outliers tend not to be wired like the rest of us, so what applies to them likely doesn't to the rest of us. It might make sense to look at LD websites under twice exceptional (regular gifted & SLD) to see what they have to say. 

Especially this part:

"In addition to difficulties with written expression and spelling, children with stealth dyslexia often show persistent, though subtle, difficulties with reading.

Not all those with dyslexia are weak at spelling. DS was early on, but that improved. Even now, when he does make a spelling error it tends to be a homonym which is at times hilarious. My niece with a late dx always excelled at spelling as she did at everything academic. Her personality was competitive; I wasn't surprised when she won the state-wide science fair in 8th grade. The older members of DH's family are relentlessly academic- all the paternal cousins in DH's generation have some sort of doctorate, schools are named for uncles and one great uncle has a building named for him- my niece is a chip off this block. 

Written expression tends to be directly associated with the amount of reading one does. Good writers are voracious readers who expose themselves to all kinds of written work- fiction, nonfiction, biography, essays, quality journalism, etc.

Our district piloted a reading remediation program when DS was in 9th grade. Administration really wanted this to look successful so they handpicked the cohort for the trial. They really wanted DS because he was classified on his IEP under SLD at the time despite being at grade level in fiction and college level in nonfiction. Being dyslexic is a bit like being an alcoholic- one isn't cured, one is repaired, remediated or recovering. I didn't love this because high school kids only get 6 instructional periods a day and PE is mandated EOD through graduation. The class was computer based prompts after a self directed reading. DS loved it, it was just after lunch with beanbag chairs and interesting options. I didn't expect his reading to improve; he was top of the class going in and remained so. But his writing improved dramatically. I think it was the forced 40 minutes of reading he'd always avoided in the past, at first because it was difficult and then because he didn't self identify as a reader. 

His writing improved noticeably during his 2nd and 3rd years of college because his major was so damned reading and writing intensive. 

Despite the appearance of age-appropriate reading comprehension on routine classroom assignments or even standardized tests, careful examination of oral reading skills almost always reveals persistent difficulties with word-for-word reading. These deficits usually result in subtle word substitutions or word skips; and they can result in significant functional problems, especially on tests.

This is pretty common for anyone with emerging reading skills. Especially when reading new material aloud. As a 3rd graders, Char is still an emerging reader. 

We frequently see children who consistently show good comprehension reading lengthy passages or even long books, yet who significantly under-perform or even fail written tests of reading comprehension because they have difficulty reading short test questions or multiple-choice answers.

This could be ADHD. It could also be that a profoundly gifted individual approaches the question with additional information or with logic that reveals the question to be vague or poorly constructed. Really smart people often struggle with multiple choice because there are often unstated assumptions present.

This seemingly paradoxical difficulty reading short passages can be better understood by considering the nature of the reading difficulties children with stealth dyslexia usually have. As mentioned earlier, these children typically show difficulties with word-by-word reading, skipping words occasionally and making word substitutions. When reading longer passages, they can often use their excellent higher-order language skills to fill in or correct errors in word reading, drawing on the redundancy and contextual cues that are usually available in longer passages. However, short passages contain fewer contextual cues. They have less redundant content, and they often have more condensed syntax, providing fewer means of correcting individual word errors. Therefore, the likelihood of errors increases as passages decrease in length."

Of course. In a longer passage with the same information restated there are more opportunities to master the content. 

You'd also need to consider the type of passage. For primary students, passages are going to tend to be shorter and will often have familiar content that a bright kid like Charlotte could answer correctly without reading it. This makes it really, really hard to get a bead on what is going on. I remember a couple of reading experiments I did with DS's psychologist who initially didn't believe me when I said the kid couldn't read. DS had a strong rote memory and could fake it it- plus dyslexia wasn't typical of Aspergers. He had DS read a novel piece from which he pulled out the word rabbit and used what he knew about rabbits to correctly answer all of the multiple choice questions posed by the psych. The he pulled out the next reading level questions which were about volcanos and just asked the questions; again DS aced them. 

As she gets older and more is expected, it will be easier to see where the disconnect is if there is one. Once the passages start to contain literary devices- character motivation, foreshadowing, analogies, symbolism, etc. as well as material that isn't already known to some degree it'll be easier to see what Char's strengths and weaknesses are around reading. 

So let's suppose we are looking at dyslexia here... given what you know about Charlotte's testing history and additional needs (ADHD etc), what would be the best route for me to go here in terms of getting a dx as well as interventions or treatments?

This is a hard one. Ideally, if she does have dyslexia treatment sooner will be more effective. There are some who say, specialized instruction should begin by age 7-8 because the brain becomes less amenable to remediation by puberty- so of like learning a language. 

That said, if she won't cooperate- perhaps because she feels shamed by all the probing- you are wasting time and money. Even DS got to a place where he had had enough. If she's mildly dyslexic as my niece is, she'll likely develop her own strategies to succeed. There are even those who would see a mild presentation as a different way of thinking in a positive way. 

I wouldn't even mind traveling if I thought it would yield results. But I am afraid a big box type eval will not be fruitful; either they will miss her more subtle cues or she will not cooperate enough to even get that far...

Yeah, TBH, I think it would be awesome if all parents had access to an eval like DS had to create a blueprint for learning that takes into account learning differences, styles, strengths so that parents could make informed choices around educational philosophies and curricula. 

Yale is considered by most to be tops for child development at this time. 

[akafred]

At this point I would settle for a roadmap for ME.

I have read several articles about "stealth" dyslexia (in sites like Understood and various sources) and they are all pretty similar and sound very much like Charlotte. I liked that article because those 2 paragraphs are more descriptive than most (sometimes a bullet point list just doesn't tell the whole story), and it just described HER so perfectly.

I understand not all dyslexic individuals struggle with spelling, but Char definitely does. It was actually the one thing specifically called out as a concern after that one eval. It's especially a writing problem. She does a little better sounding it out orally if she is trying hard to spell, but not much. Her biggest problem is she drops sounds, esp vowels. Let's say she writes a note to a neighborhood kid and wants him to come watch a movie tonight, she will write: "Dr frid, We ar goeg to wsh a muve et 6 tont." Then I see the letters her third grade friends write back. The handwriting is better of course, but the spelling is worlds better, letter spacing is better, they may misspell a word but their misspelling makes more sense than hers, etc. Her writing is def more of an issue than reading appears to be, but that seems to be in line with what stealth dyslexia looks like too.

[auntie]

akafred, before DS was remediated- in a whole language aka creative spelling environment, he usually dropped short vowels and schwa sounds. But long vowels were there. Blends and diagraphs were iffy. To address this I would want Orton Gillingham or Lindamood Bell.

[akafred]

auntie, the one who went to DD's school for a past student is Orton Gillingham. Actually OG seems to be fairly common around here; LMB is much less available. Where I am at right now is just not fully knowing. And that is a hard place for me to be.

[akafred]

Anyone familiar with Dr. Amend in Lexington, KY? He is apparently magic with uncooperative kids, and has a lot of 2e experience.

[usm]

We paid OOP for a psycho educational eval last year for my then 6 yr old. We suspected ADHD. We paid $2500 and they were broken into 7 1 hr sessions, with the first and last being just my husband and I. It was a good mix of “testing” so he didn’t know. They played legos or a short game to get warmed up and alternated the Drs preferred activity (testing) with C’s. The Dr diagnosed him with ADHD inattentive type and Dyslexia.

Dyslexia was not even on our radar even though we knew he struggled with speech (articulation) and struggled with spelling and some reading but didn’t know if it was related to inattention. He just had incredible work around a we didn’t notice. He sees words and concepts and not what the actual words so he substitutes often, even when seeing a word out of context. He mixed up made and build, look and see, and other words that look nothing alike but could mean similar. His diagnosis was based off of large gaps in his IQ but not low enough that the school system would identify him. The information we gained from the eval was spot on to what we were seeing in day to day life.

I went to a luncheon a few weeks ago and the Shaywitzes from Yale Dyslexia center presented. The different types of dyslexia and all of the work arounds are fascinating. They suspect 1 in 5 people actually have dyslexia. I also read The Power of Different which was very eye opening and helped me to accept the dyslexia diagnosis.

[auntie]

Nov 8, 2017 19:17:20 GMT -5 usm said:

Dyslexia was not even on our radar even though we knew he struggled with speech (articulation) and struggled with spelling and some reading but didn’t know if it was related to inattention. He just had incredible work around a we didn’t notice. He sees words and concepts and not what the actual words so he substitutes often, even when seeing a word out of context. He mixed up made and build, look and see, and other words that look nothing alike but could mean similar. His diagnosis was based off of large gaps in his IQ but not low enough that the school system would identify him. The information we gained from the eval was spot on to what we were seeing in day to day life.

This is a common thing is ASD as well. DS, who is also dyslexic, did this along with the more usual delay in use of pronouns. DS reversed "ask" and "tell" as well as "pink" and "purple". He also had an unconventional, yet logical, use for "warmer". When he said it, it meant "less hot- more warn instead". Made bathtime interesting.


I went to a luncheon a few weeks ago and the Shaywitzes from Yale Dyslexia center presented. The different types of dyslexia and all of the work arounds are fascinating. They suspect 1 in 5 people actually have dyslexia. I also read The Power of Different which was very eye opening and helped me to accept the dyslexia diagnosis.

The other thing that's interesting is the differing rates of dyslexia based on the difficulty of the language. There are people who are dyslexic in English who aren't in other languages. DS had a classmate who struggled with English, which was the primary language in his home, but was top of his class in learning Hebrew. 

[usm]

Nov 9, 2017 7:47:58 GMT -5 auntie said:

Nov 8, 2017 19:17:20 GMT -5 usm said:

Dyslexia was not even on our radar even though we knew he struggled with speech (articulation) and struggled with spelling and some reading but didn’t know if it was related to inattention. He just had incredible work around a we didn’t notice. He sees words and concepts and not what the actual words so he substitutes often, even when seeing a word out of context. He mixed up made and build, look and see, and other words that look nothing alike but could mean similar. His diagnosis was based off of large gaps in his IQ but not low enough that the school system would identify him. The information we gained from the eval was spot on to what we were seeing in day to day life.

This is a common thing is ASD as well. DS, who is also dyslexic, did this along with the more usual delay in use of pronouns. DS reversed "ask" and "tell" as well as "pink" and "purple". He also had an unconventional, yet logical, use for "warmer". When he said it, it meant "less hot- more warn instead". Made bathtime interesting.


I went to a luncheon a few weeks ago and the Shaywitzes from Yale Dyslexia center presented. The different types of dyslexia and all of the work arounds are fascinating. They suspect 1 in 5 people actually have dyslexia. I also read The Power of Different which was very eye opening and helped me to accept the dyslexia diagnosis.

The other thing that's interesting is the differing rates of dyslexia based on the difficulty of the language. There are people who are dyslexic in English who aren't in other languages. DS had a classmate who struggled with English, which was the primary language in his home, but was top of his class in learning Hebrew. 

Very interesting about bath time, I think this is an exact conversation we had often when he was younger. He didn’t see it has a spectrum of temp and instead in three categories: cold, warm, and hot. It’s amazing looking back and seeing all these very common red flags that no one was concerned about at the time.

[waverly]

Sorry to make this thread about me, akafred , but apparently nephew has been finally going to the psychologist and actually talking! I think it is his 3rd or 4th time. I don't know if they have done a formal assessment though.  It feels amazing since my sister has been dragging her heels on this for years, and then he didn't participate.  I hope it helps him.  

[akafred]

I hope so, too, waverly!