Test Scores: NVLD? Something Else? Help With Next Steps

[meggb]

Kind readers,

 

I am hoping for some wisdom. We recently had my 10 year old son evaluated by the school psychologist. I have long suspected he has processing speed issues, and I was mainly looking to get him help with his handwriting. 

 

Well, the results were a bit shocking to me. Perhaps I am a mother in denial, but some of the visual scores are so low that I have a hard time believing them. We do have an appointment with a vision therapist. We will have to pay for this out of pocket, which I'm willing to do, of course, if it will help. 

 

I am wondering if I should also have a private neuropsych test him. I know these results suggest NVLD or maybe ADHD or autism.....

 

He is slow to make friends, but once he has them, he plays appropriately. He is above grade level in reading and doesn't have problems with comprehension that I've noticed. He does well in math, though it has been mostly computation so far. He loves to put together Legos, and he is usually the first in the house to master any new piece of technology. He is a Terrible speller, and his handwriting is horrendous. He also has problems with fine motor tasks-worksheets that require him to fit words into boxes, for example. 

 

I found some visual closure, matching, and perception tasks online, and he was able to do them all fine with me. The gal who administered these parts of the tests did say that he seemed distracted and was rocking his chair back and gazing off in the distance, but she seemed to think he was doing that because the tasks were too difficult. I don't know......

 

If you have the patience to continue reading, I have his scores below. I have gotten some books on NVLD and processing. I would love any opinions on next steps-particularly if anyone has encouraging words about things that have worked for you in similar situations. The school is going to offer him writing help in the resource room, but I suspect that's going to be inadequate to address his real issues. 

 

Differential Ability Scales 

Verbal   Standard Score   116        Percentile 81

Nonverbal                         75                           5

Spatial                               118                        88

 

Woodcock Johnson

Verbal Ability                      109                       72

Thinking Ability                   82                         12

Cognitive Efficiency            72                          3

 

Subtests

Verbal Comprehension       109                      72

Visual Auditory Learning       73                      3

Spatial Relations                   97                      43

Sound Blending                     84                      14

Concept Formation                88                      22

Visual Matching                     17                       .1

Numbers Reversed              103                      57

 

[kbutton]

I would really be sure to quiz the COVD on the visual issues--find out if the COVD will offer any explanations. You might also ask if they work on retained primitive reflexes.

 

My son used to be good at visual-spatial stuff, and then he suddenly wasn't. He eventually qualified for vision therapy this winter, which incorporates work on retained reflexes (this is not always the case). His homework now that he has been discharged? A lot of visual perception puzzles that he used to enjoy and do quite well but have been difficult more recently. A lot of his motor issues (including handwriting) have improved dramatically--within three weeks of therapy, we noticed he was not spilling things 20 times a day anymore. The difference is astonishing. He had major issues with tracking, but we had no idea this was the case--he NEVER uses his finger to read, and has never let us use a finger to point either. His reading fluency (tested at the local school) was good. He must have been exerting tremendous effort to read before VT. It's been very helpful to have that information from his exam (we've been seeing a COVD optometrist for a couple of year).

 

Anyway, I would find out more from the COVD before drawing too many conclusions. Also, I am not certain that tests like the Woodcock Johnson are all that helpful without an IQ reference. I would not move on that front until you hear back from the COVD though.

 

Hang in there!

[PeterPan]

Did they run a pragmatics test?  That would be useful to you.  And did they run ADHD testing and questionaires?  You're seeing it correctly.  It's really just a question of whether they ran more than this or stopped.  You don't have a WISC, and that's a pretty standard thing to want.  You're so close to gifted on that verbal score, it would be useful to you to see what happens on a WISC.  Your thought process is correct that it could go multiple ways, result in several diagnoses.  

 

Did the school run an OT eval for the handwriting?  Has he been checked for retained primitive reflexes?  I'm all for VT, but you want a good OT eval as well.  You need one of them, either the eye doc or the OT or both, to check for retained reflexes.  If he has them, they'll need to be worked on in order for the vision work to be effective.  And really, with the scant amount you've said (and just sort of vibes online) no one can predict the amount or slightness of what would turn up.  A school OT eval would have been pretty cursory anyway, mainly looking at fine motor to see if they HAVE to qualify him for anything.  Some schools cover sensory, some don't.  Is he having sensory issues?

 

Is he having issues with anxiety, getting stuck, or severe perfectionism?  

 

What things do you want to deal with first?  And are you pulling him out or leaving him in school?  You want to improve his access to services and what's covered in his IEP?  Or you plan to pull him and handle things yourself?  And does your state offer disability funding or will your insurance cover this?

 

I ask all that, because it's really part of how you determine the game plan.  You're going to end up triaging and thinking about what needs to be dealt with first.  Me, I would get a basic annual visit kind of exam with your proposed developmental optometrist.  Don't get the full one, because you don't even know if you like the guy, kwim?  Go in, get that inexpensive eval, and ask him to SCREEN for the developmental vision problems.  Then you can eliminate that as an issue or decide yes I like this eye doc and there's warrant to move forward.  

 

Meanwhile, I'd get that pragmatics eval.  The school SLP should have run it.  He's having trouble socially and pragmatics are part of NVLD.  I'd get that done.  If they won't do it, then get it done privately.  It's more a pain in the butt for them to score than anything.  The actual administration is just an hour.  

 

And I'd get a good OT eval.  If the school did theirs, still go get one, because it was NOT probably thorough enough.  They're only looking for such glaring discrepancies that they HAVE to treat.  2 standard deviations and whatever is on a test.  They won't necessarily check for retained reflexes, even those can cause the vision problems you're concerned about.  And if sensory is on the table, you want someone able to discuss that.  Again, the school SHOULD have done an eval for that.

 

So what did they say on the writing?  Are they giving him SLD labels?  

 

I know it feels like they have to dissect your kid in order to put him back together and have a whole child.  My ds saw *3* psychs this past year.  One was private, one the school psych, and the third for a 2nd opinion to sort things out.  We then had that 2nd opinion confirmed by another person, if you can imagine, lol.  Sometimes it takes several times to get through everything.  The more you look for one place that will really slow down and listen, the better.  The thing that would be most concerning to me is the social and any anxiety, because social is what affects your ability to hold a job.  Writing, we can deal with that.  Math, oh well.  Dyslexia, we have tech.  But social skills, you're screwed if you don't have them.  And there can be stuff going on you aren't seeing because he's at school, kwim?  That's where the pragmatics testing can help, because it can sift out some of that and show theory of mind, etc. and find those weaknesses.  I'm saying, for me, that's where I put my energy, into helping my ds be stable and whole.  The SLDs, we'll get there.  

 

Welcome to the boards, btw.  Sorry for the rough situation under which you come to us, but you're very welcome.  My ds' diagnoses, btw, are ADHD, ASD, SLD reading/writing/math, SPD, and verbal apraxia.  Not NVLD, precisely, but there are others on the board with your mix.  And they cross over a lot.  You're going the right way.  Anything you're considering, just ask about and somebody probably will have tried it.   :)

 

PS.  Do you know how to google search the boards?  You use your term and then site:welltrainedmind.com  It will search just the wtm boards for that term.  It's a way to conjure up advice of boardies past, people who have moved on but who also dealt with this.  I use it a LOT.   :)

Edited January 30, 2016 by OhElizabeth

[meggb]

Thank you both so much for your kind and generous responses. 

 

The school district ot and vision person are the same. I believe her ot assessment was confined to having him do two handwriting samples, although there might have been other tasks I'm forgetting. I know she thought his pencil grip was fine.

 

He scored low in fine motor but not low enough to qualify for help. I believe you have to be supremely low in order to get help in this area in our district. I hadn't heard about primitive reflexes before. It sounds like maybe I need to find a private ot to evaluate him?

 

I'm not sure if he had a test of pragmatics. Is that the name of it? Would it be given by the speech person?  I forgot to mention he is already in speech-for articulation only. She did do a reassessment of his speech, but I'm not sure if it went beyond articulation. He actually enjoys word play and is pretty quick with a comeback (unfortunately-lol). When he initially qualified for speech as a preschooler he was in the 99th percentile for vocabulary and the 1st for articulation. I've often wondered how the evaluator understood all those words! Ha! 

 

His teacher completed the BRIEF (sp?) and he came back as average. 

 

He isn't a perfectionist, and I wouldn't say he's anxious or depressed. He does tend to play alone during recess, although recently he has started playing kickball with a group of kids. He wants to have more friends, and he does do well with kids once he knows them, but that initial piece of getting to know people and join in is difficult for him. My husband is also on the shy/introverted side, though you wouldn't know it if you met him, so it's possible some of that is just his personality. I do think there is a visual piece to it, as he used to have some face blindness. When he was a first grader, he thought every kid with the same color/shape of hair was the same. He does have some sensory issues, although not as much as he used to. He likes to be covered up by blankets at night, and he likes to get straight into his pajamas when he gets home. When he was a toddler he was into absolutely everything-he literally could not pass a button or a lid or a drawer without pushing it, lifting it up, or pulling it out. When he was a preschooler, well meaning people used to suggest that he had ADHD or sensory integration disorder but neither of those have seemed quite right to me. He does have trouble looking people in the eye and maintaining eye contact. That is probably the one thing people most notice. Other than that and the handwriting, I don't think the average person would pick him out as being different from his peers.

 

He is actually doing well in his class this year. His teacher has remarked that he will sometimes seem like he isn't paying attention, but he knows the answers when he's called on. His biggest issue is that he will get out a book and read when he isn't supposed to. He did have problems last year with bumping into kids and accidentally getting into their space. I think it has helped that we moved schools, and he has a masterful teacher this year-really for the first time.

 

I'm not sure what I want to do.....there is a private school that works with children with learning disabilities that I'm considering. I think mainly I'm trying to figure out what supplemental therapies or tutoring I should focus on. I guess I will also add that he was an unexpected pregnancy, and I was six weeks along when I found out he was on the way. I've always had extreme guilt about the drinking I did before I knew I was pregnant and the depression I had after he was born, and I can't help but feel that his struggles are my fault. I know that's off topic and probably more than anyone needs to know.....

 

I guess I'm here partly because my emotions are running so amok now that I'm afraid I'll make poor decisions and sign him up for eighty kinds of help before I think things through.

 

Thank you again for the welcome and the kind words.

 

 

[PeterPan]

I don't know if you feel this, but I think the tendency, when you first realize there are SN, is to want to FIX things.  So the gotta try things, gotta try things, is because as the parent you really want it to GO AWAY.  And it's like ok, if I had enough money and the perfect therapies, I could make this GO AWAY.  

 

After you're at it longer, you develop this more balanced perspective of tools, like ok I can't make this go away but I *can* give him a lot more tools.  And that's even a debate that is had, like is ASD curable, blah blah.  The MRIs right now are showing that, whether it's ASD or ADHD, what seems like it's gone as adults is actually just improvement of skills, that in fact their BRAINS are clinically the same.  Still ASD/ADHD.  But that's good, because that means, ok, we CAN get a lot of movement sometimes, and we CAN build these skills!  Where we are now isn't where we'll be.

 

I'm so sorry you feel guilty about this.  My ds' apraxia is sometimes caused by oxygen deprivation during birth, so that was something I wondered for a long time, whether it was my fault.  I remember asking the first neuropsych we saw, and he's like, uh, did you drop him on his head???  LOL  And I realized ok, there's no clinical substantiation for this, it's no my fault, I can let this go.  And when we got the diagnosis pushed over to ASD, I realized ok, this is genetic, it's how it is, I didn't CAUSE it.  All the pieces finally came together when we got that global diagnosis.

 

Given that your dh has some traits (from what you're saying), I think you have no reason to think you caused this.  It's probably genetic.  And I don't know, what are the stats.  I don't know much about FAS.  Others here have dealt with it.  I'm just guessing that, since your dh has some traits, that you're already seeing the line and it's largely genetic.  And even if it's not, it's OK.  He's ok, and everything is going to BE ok.  He sounds very functional.  He has been working in school, mainstreamed, doing reasonably well, and there are some things you want to improve.  Even within a label, there are more severe and maybe more moderate presentations.  I don't think you have to worry that you're missing things and that something horrific is looming.  Evals can be really helpful with that too.  Like if someone runs a pragmatics eval for you and it's normal, that's a GOOD sign, kwim?  

 

This whole mess is an alphabet soup.  I think Attwood or someone wrote a book calling it Syndrome Mix.  But these things overlap so much.  It may very well be that you're seeing what you're seeing and that you don't have to be questioning yourself about the 20 things you're not seeing, kwim?  Yes, I would get a private OT eval because it will be more thorough.  I would get a pragmatics eval.  I would want that BRIEF done by multiple people, not just his teacher.  You should have filled one out.  They should have run a computerized test as well to look at the inattention/impulsivity question.  It's actually a really serious question, because you're giving examples of inattention in class without an explanation.  Like if it's not ADHD, then is there another explanation?  Is he bored?  Good reason to get an actual IQ with a WISC.

 

A pragmatics test will show theory of mind issues, perspective taking, etc.  Those are necessary for both social skills and school skills like reading comprehension.  Did they run achievement?  Surely they did.  How are those scores?  Anything below expected?  And are they diagnosing SLDs for those, or do they think scores in pragmatics, etc. are causing them?  

 

My ds does not have issues, technically, at least as of right now, on the fine motor portion of the OT testing, but he does struggle with writing.  It gets him an SLD writing label.  That's why I keep asking if the school gave him SLD labels.  Once you know those, then you can say ok, time to kick up our use of technology.  You want to be all over technology.  Technology is WHERE IT'S AT.  The most functional people with disabilities own their tech and use, use, use it.  Dictation, alternate keyboard layouts (my dd uses Dvorak), mindmapping software, ereaders, etc.  Take your energy that is currently in guilt and funnel it and redirect it into action on tech, on helping him access things and communicate better.  That IQ score is going to be in the bright range at least, if I'm reading those scores correctly.  He has a LOT of potential inside, so you want to let that out.

 

Do you think that SN school would be good?  School flavors vary.  Have you thought about homeschooling him for a while?  It can be a very positive way to get people back on their feet and get them empowered.  Does he have any passions or interests you could facilitate while working on skill-building?  My goal with my ds (and we'll see, but I'm just saying) is to get him enough skills that he can go into a situation with his *intellectual* peers.  That's a challenge to me, and I'm just saying your ds might notice that.  He might be bored.  That might explain some of the fading out.

 

Oh, you said legos!  Would he be interested in lego robotics?  There are some awesome lego robotics teams, and that way he could compete.  You said he likes tech.  Does he have access to an ipad or ipod or kindle or something to do dictation for his writing? This could make a huge difference.  How is his typing?  I switched my dd to Dvorak at age 12, and that was when she FINALLY got to a functional typing speed.  Typing is SO important if our kids can do it.  If they can't, then use dictation.  Inspiration software.  Let him get active online with some kind of forums or websites related to this lego interest.  Have you read Just Give Him the Whale?  Might be inspiring to you.  He sounds like someone whom it would fit.  :)  

 

Homeschooling works especially well when it gives you the freedom to pursue these interests and work on skills in an alternate way.  So if he can build his lego things and then write about his lego things and math his lego things and spell his lego things, it's all the more motivating and real and whole, kwim?  And then he makes friends within his lego interests and busts through that social barrier.  And he can type to chat about his lego things, make videos about his lego things...

 

Have you had the IEP meeting to see what accommodations and changes they're recommending?  

 

And yes, you have enough sensory going on to want that OT eval.  Our ps did the SPD diagnosis for ds and put some things into his IEP.  We homeschool, but he has an IEP to get access to disability funding.  Anyways, I know not all schools do.  Learning about self-regulation, sensory, etc. can be HUGE in helping him get to a good place.  Zones of Regulation is a book that is pretty commonly used.  I went to the training, but it's all there in the book. 

 

If you're looking into private evals, sometimes you'll find an autism clinic that will have OT, SLP, psych all in one.  That can be a nice way of doing things.  Some universities have that.  I'm not saying it's autism either.  I'm just saying they're happy to distinguish it and they'll have everything under one roof.  For OT, definitely find someone who seems to be dealing with a lot of ASD and SPD.  There is SIPT certification that you can look for also.

[kbutton]

It sounds like you might have more than just vision going on, but I still suggest a COVD visit. I am not sure what a full test vs. a "regular visit" with a screening for ocular motor issues would be--that distinction would make no sense in our optometrist's practice. So, when OhE recommends it, and it sounds different from what I said, realize we're probably on the same page and talking about a difference from one practice to the next. We both have used COVD's in the same ways in real life. :-)

 

Also, she mentions OT for retained reflexes--this is going to vary by area. We can't get straight answers from ANYONE here about retained reflexes except for at the vision therapist's office. She works on reflex integration as part of visual development. The only other options around here are more controversial and have far less consistent results (Brain Balance Center, some non-profits, etc.). For us, VT was the only way it would realistically even be on the table. I did successfully lobby the school OT/PT to evaluate for them, but they could not include that in their report. They gave me a separate letter discussing their findings. In addition, they only felt comfortable doing the reflex evaluation because they'd just been to a training session on it for their continuing education. 

 

I do know that our vision therapist has described kids like your son seeing dramatic changes, but the fact is that the same symptoms can be caused by different things, and you need to know what's going on to treat it correctly. 

 

I would do a vision evaluation because it's the least expensive option and may do a LOT. In our area, it's also the least expensive option for THERAPY, and it's complementary to OT. It's also customized to the child, whereas some of the other options that deal with reflexes are programs that stay the same for each child. We did have great results from OT, but I know that doing VT first made the OT success possible (for my older son). My younger son had less success with OT (though it was good on an interpersonal level and did help him work on overall body strength), and I think it's because they didn't really dig into the reflex question.

[meggb]

Thank you again. 

 

I've emailed to ask if a pragmatics test was done.

 

As far as achievement tests, they did the OWLS for writing, and he came out with a 74. They are actually now doing math, which they decided to check out after looking at his slow processing speed. 

 

They didn't look at reading, I think because he has been scoring above grade level on tests in class all year, although it's just been the STARS. I don't know how accurate it is.

 

I Have thought about homeschooling, but everyone in the family thinks it would be nuts. He does, "Push my buttons," when he wants to get out of something. I know I have the skills and resources to teach him; I'm just not sure if I have the emotional fortitude! He does hate school, which is the main reason I've thought about homeschooling in the past. He hates it slightly less this year, thanks to having a male teacher who loves superheroes and gives out comics and posters as rewards. He is a wonderful teacher. I fear what will happen next year, as this is the first year we've had one who was really a good fit. Last year was a total disaster. Maybe I need to look more into our local homeschool community and find some cheerleaders outside of my home and family.

 

Thank you for your thoughts on technology and Legos. Those are both excellent ideas and I will get on them. 

 

The IEP is later this month. I'm pretty sure they'll recommend 30 minutes of resource room help 3 x a week and use of keyboard/reduced assignment length/extra time on assignments as accommodations. I am just doubtful about whether the resource room teacher is really going to have the skill base to get to the root of his problems. 

 

I do have an appointment with the vision therapist, and I'm looking into a specialized tutoring center that has had good luck with kids who have processing speed and executive function issues. 

 

Thank you for helping me focus on the good parts of his scores. I see the low ones that are dragging everything down, but I need to refoucs on my real child and not imagine the worst. I also have anxiety, and I'm totally unorganized, so it may just be that the kiddo got an unlucky combination of quirks from the two of us. 

 

Thank you again for all your time. 

[PeterPan]

Kbutton, at our practice they have an annual visit, just your normal gig where they check acuity, eye health, whether you need a scrip, that kind of thing.  It's about an hour, and costs around $100 for a child.  Actually, I think last time ds was $60.  Anyways, then they have a full developmental vision exam.  When dd had that done years ago, it was $250.  It was 2 1/2 hours, and they did quite a bit of testing, both with tools, with the Visagraph (infrared goggles to track eye movements while reading), visual processing testing, etc.  That was where they could go through each aspect of developmental vision and test and say this is not age-appropriate, this is what is going on, and pair it with your symptoms.  Then they would give you a contract with their estimate of time for therapy and cost.  

 

So yes, at our practice that's how it's done.  There are two appointments, and you can schedule those two services together, all in one, or separately.  I've had enough people I've talked with that have had a variety of dissatisfied experiences just walking into the developmental optometrist and saying sign me up with this $350 eval that I really can't in good conscience recommend that FIRST, kwim?  These docs OBVIOUSLY have an inexpensive, normal kind of eye exam visit they do.  Sometimes people are new and they don't realize that they literally will NOT be able to afford the doc's services, that maybe his whole approach to care is not fitting theirs.  I have a friend near DC who went to a doc that literally expected them to do NO HOMEWORK because ALL the care would be done daily in-office!  And so you can imagine the only people affording that are people with nannies.  ;)  That's pretty common there, but it didn't happen to be my friend's pricepoint.  We've had other people who went in, did the full dev. vision exam ($$$), and realized they didn't like the doc.  Maybe he wasn't trustworthy, he wasn't clicking with their kid, their hackles were up.  So there, again, you had this problem that simply going for a basic eye exam, much less expensive, and asking to be screened, would have solved.  And I've had people who were like why did I pay for that $$$ exam, there was no indication even, kwim?  

 

So I've seen LOTS of situations where just going for that basic exam first could have saved a lot of grief.  You're making sure the full eval is warranted.  You're making sure you like the doc.  You're making sure their approach is going to work for you.  It's just everything.  It's a conservative, inexpensive way to start.  And since most docs are going to want BOTH, it's really no big DEAL to suggest that a conservative approach can be wise.  Most eye docs can get you in within 2 weeks.  It just really isn't that big a deal to separate them, and for some people it's going to save a lot of grief.

[PeterPan]

Ok, you said you want not to get sucked into things?  That tutoring center is where I would slow down.  Sometimes they're really good, and sometimes they're doing things you could have done yourself.  They're training is minimal.  Sometimes they're astonishingly expensive or have these strict requirements on how many hours.  Sometimes they do really good things, like work on retained reflexes.  But that's something that your OT should be looking at.  I think cognitive work CAN be very useful, but a $$$ place isn't the only way to do it.  It's definitely good stuff to do, but you just have that choice whether you want to work on it yourself or have them do it.  I'm not saying not to do it, but I'm saying that's one where you could slow down.

 

I think you're right that a hard situation/dynamic won't change simply because you start homeschooling.  You're reading that correctly.  However a behaviorist could get in there and work on his social skills, perspective taking, theory of mind, executive functions (which include self-monitoring, meta-cognition, etc.), and THAT could improve his ability to work with ANYONE.  

 

We think of EF as secretarial skills, working memory, organizing our writing, that kind of thing, which is what a tutoring center will commonly hit.  However EF also includes all his self-regulation, etc.  Linguisystems and amazon both have books on EF.  

 

If you get private evals, will your insurance cover services?  That's something to think through.  Like ok, say you want a behaviorist or SLP to work on social skills and EF.  Will your insurance cover that?  Or if you go to the SN school, will they provide that as part of tuition or would it be extra?  And if they run pragmatics at the ps, will they cover it?  Sometimes if you get things into the IEP, the ps will provide those services even to students in a private school.  Just variations by location.  I'm just saying some do.  

 

It would be nice for you to have a more thorough examination of the ADHD question, to know if meds would be useful/warranted.  They can improve that self-awareness.  You're saying he has had disaster years and that seldom does a teacher really fit him.  That seems like the MOST important thing for you to work on, finding what is causing that and getting that improved.  And that may need a combo approach, like OT for his whole body (proprioception, self-regulation, modulation, etc.), a behaviorist to work on the social and perspective taking and do Zones of Regulation, etc.  

 

You can usually handle 2 or 3 therapies at once.  If he needs VT, I would wait on any tutoring and vision-based cognitive therapies, kwim?  That wouldn't even make sense.  You're talking a couple years here of focused intervention, not all at once.  So me, I'd work on the vision, OT, and get going with a behaviorist.  Then, when the vision is done, you keep going with the OT and behaviorist and add in some cognitive therapies or a math or reading tutor or whatever.  

 

What explains that low "visual auditory learning" score?  I don't even know what that is, because my ds didn't have that particular test (I don't think?).  It's kind of curious though.  You pair that with the crazy low articulation he had when he started school and these behavioral challenges.  A LOT of behavioral challenges actually have *communication* problems underlying them.  My ds' profile is very, very similar to yours, with the speech problems but crazy high vocabulary.  And like your ds, my ds is very bright.  The private psych did the CELF5, which is a detailed language test a ps SLP *can* run if they have it.  It has a pragmatics component, btw, but it's not as detailed a pragmatics test as the social language development test that you're hoping they run.  Anyways, I would NEVER have suspected the results my ds had on the CELF.  

 

His *single sentence* comprehension was at the 28th percentile.  With a 99th percentile vocabulary!!!  So literally he was NOT UNDERSTANDING things people said to him.  Totally, totally blew me away.  The CELF looks at receptive language at the word, sentence, larger, and finally paragraph level.  My ds' scores went up with larger samples, to where at the paragraph level he was pretty close to normal (85th percentile or something).  That wasn't IQ-appropriate for him, but it was dramatically better.  

 

In his case, they said his issue is meta-cognition, that his brain wasn't noticing things.  Wasn't noticing endings on words, whether something was singular or plural, whether the word was what or where, blah blah.  Meta-linguistics, meta-cognition.  It's all EF btw.  So now I do speech therapy materials with him that force him to listen VERY VERY CAREFULLY to little bits of sentences so he can touch the correct picture.  And his comprehension is improving, his ability to use it in speech is improving, and his ability to read a sentence and understand what he read is improving.  

 

For him, there literally was a point where he was hyperlexic, even as a dyslexic!  Like, literally, he was reading things and having NO CLUE what he had read.  This is NOT an unusual presentation, and without that detailed language testing I wouldn't have realized it was going on.  Really, I don't know how you'd compel a ps SLP to run that test.  It's more time, more $$, so they won't.  But when you go to a private neuropsych and they do 6-10 hours of testing, they can run this additional stuff and dig in.  But the ps SLP has it to do if you have something to convince them they need to, kwim?  It's just how do you DEMONSTRATE that on such a super bright dc, kwim?  I mean, with a 99th percentile vocabulary and that high verbal score?  He's clearly quite bright.  So he has been *masking* some of these disabilities.

Edited January 31, 2016 by OhElizabeth

[kbutton]

Kbutton, at our practice they have an annual visit, just your normal gig where they check acuity, eye health, whether you need a scrip, that kind of thing.  It's about an hour, and costs around $100 for a child.  Actually, I think last time ds was $60.  Anyways, then they have a full developmental vision exam.  When dd had that done years ago, it was $250.  It was 2 1/2 hours, and they did quite a bit of testing, both with tools, with the Visagraph (infrared goggles to track eye movements while reading), visual processing testing, etc.  That was where they could go through each aspect of developmental vision and test and say this is not age-appropriate, this is what is going on, and pair it with your symptoms.  Then they would give you a contract with their estimate of time for therapy and cost.  

 

Wow, our COVD is apparently missing the gravy train, lol! Her inexpensive exam is THE exam, and it's not that complicated or long (but it's spot on--she can demonstrate exactly what is going on very quickly even if you have had no previous experience with it). She has it honed to a really fine tune, encourages homework (encouraged with small prizes at each session visit and a drawing once per month), and as soon as you are flying free, testing well, etc., you are released with homework and a follow-up (if you do homework; if not, I think you do more weeks of VT). After that experience (2x), I would be sure anything else must mean I was dealing with a shyster, lol! Both of my kids finished VT before her time estimate, and they said it's because we're unusually complaint about homework. 

 

Maybe that is why everyone LOVES this COVD, and the only others I've heard about in this part of the state don't get good reviews. In fact, people are pretty shocked when we've raved about VT unless they did VT with our same doc. Hmm...

 

Yeah, it's the best deal going here, and 2/3 of the cost is billed under OT, so it's really a win-win here to do VT first.

 

OP, you really do need to ask a lot of questions each place you go and ask around about their reputation. Everyone has different experiences.

[meggb]

The vision therapist I've found thus far does a free initial consult and then charges 500.00 for a 2nd, 4 hour exam. It sounds like I should shop around a bit. 

 

I'm encouraged to hear about some success with it, as it seems to be quite a controversial therapy. 

 

Yesterday, I was pretty convinced he has NVLD, because everything I read was him to a T. But then I ran across something that said kids with NVLD are usually excellent spellers, and that is NOT him. Spelling is absolutely his worst thing, so I don't know.....The tutoring center I'm looking at is a non profit and they work only with children with special needs. I haven't done anything but had a phone call with them so far, though.

 

Thank you again for sharing your experiences. I will come back and update for anyone with interest. 

 

[Mom28GreatKids]

Kbutton- I have found that opinions on retained reflexes can vary from OT to OT in the same clinic. So there you go. SLP is a believer, OT not so sure, but she is doing reflex integration at the request of the SLP. Might be nice if the OT was more of a believer and then maybe it wouldn't seem like a half hearted attempt to me.

 

Sent from my XT1049 using Tapatalk

[Lecka]

That is interesting. Retained reflexes are new here, but school OTs are really into it. I think "hey, they are at school" about it. It is new enough though, it is a little bit of still watching to see what range of results they get with kids, I think.

 

Two school OTs went out-of-state earlier this year to do a higher level training for it, too.

[kbutton]

The vision therapist I've found thus far does a free initial consult and then charges 500.00 for a 2nd, 4 hour exam. It sounds like I should shop around a bit. 

 

I'm encouraged to hear about some success with it, as it seems to be quite a controversial therapy. 

 

Yesterday, I was pretty convinced he has NVLD, because everything I read was him to a T. But then I ran across something that said kids with NVLD are usually excellent spellers, and that is NOT him. Spelling is absolutely his worst thing, so I don't know.....The tutoring center I'm looking at is a non profit and they work only with children with special needs. I haven't done anything but had a phone call with them so far, though.

 

Thank you again for sharing your experiences. I will come back and update for anyone with interest. 

 

Wow. I am not sure we paid $500 for the whole set of therapies (8 weeks for us) and the exams all together! It was 1:1 therapy for half an hour per week (which sometimes went over because she had no patient the next hour), and it was tailored (my older son had overlapping issues, and his therapy was tailored for him as well). We didn't pay that much for an OT evaluation either or for audiology testing. We did pay a relative ton to the SLP (it was a long, detailed test), and to the neuropsych, who glossed over every issue and said it's all ADHD. (The "all ADHD" with regard to handwriting, whining, etc. decreased dramatically within three weeks of starting VT too. The ADHD with regard to reading has improved too by having us slow down our speaking while reading--CAPD--and with VT.) Evaluations at tutoring centers around here are about $200, I think. They work on language and math issues usually and use things like Visualizing and Verbalizing and other set curriculums (though they may tailor lessons).

 

See, my younger son looks rather NVLD on paper and is at the age this stuff emerges. He previously did really well at visual tasks, and then it tanked. Social is kind of iffy--I mean, he's got a brother on the spectrum, he has ADHD, and he has CAPD. Those things all mean he has some hits with language and some immaturity, but he's also very sweet and mature in other ways. As I was re-reading The Mislabeled Child, they talk about kids who really have visual motor deficits presented as NVLD. I am wondering if that is my son. Unfortunately, the kind of stuff they list for working on those issues seems to fall short of what worked with vision therapy. Also, the VT does the reflexes, which is hit or miss. It's just such a mess.

 

I would definitely shop around and ask lots of questions. You might not need reflex work, but if you don't ask someone who is knowledgeable and good at it, you won't really get a good answer. We thought our OT considered reflexes, but apparently, that's only when things are a total disaster--it's not evaluated all the time, as a rule, as a basis for knowing if a therapy will work for a child. 

 

I would not even have known that our VT works on reflexes if I had not asked specifically. My older son went through VT first, and we were astounded at what kinds of things improved that had NOTHING to do with vision. I had found out more about retained reflexes not long before our littler guy was evaluated (again) for VT (he has an exam every year with this doc), and that was when I asked about reflexes. The COVD said that they have heard stories of kids breaking through issues during VT that had persisted after YEARS of OT or PT, but that they just treat vision stuff with reflexes. They don't bill it as anything else. She had not realized that my older son had other stuff improve (especially bilateral coordination), but she was surprised that it was the defining feature of what VT did for us. He had not testing as having super-strong retained reflexes, just some minor issues. But, it was shocking to hear her say that years of PT had done nothing for other kids, only to have VT fix the problems. My younger son has had a lot of physical changes, including an enormous and spontaneous reduction in w-sitting, which is something that he had worked on in OT with limited success. He is also improving in core strength, which was something OT worked on, but we didn't see this kind of rapid improvement.

[PeterPan]

VT places just vary.  Definitely, definitely call around.  See, truth is, they CAN test all this stuff in short order, at least the basics.  But they can't run a visagraph (which I found really helpful with dd!) and do the full visual processing testing AND talk through your history AND do all the tests in 1 hour, mercy.  And if that doc is seeing you 4 hours but doing an annual exam (1 hour) AND the full developmental exam, that would be pretty typical.  And part of it is slowing down and answering your questions and letting you connect the dots.  

 

But yes, they can whiz through the basic tools quickly, absolutely.  I don't think there's anything *deficient* about Kbutton's doc's approach.  That's how that doc approaches it.  Each doc has how they do things.  I liked what we got, with the 2 1/2 hour eval, because we had enough time to slow down and understand WHY things were happening.  I needed that.  The visagraph was very helpful to me, and the visual processing testing was useful.  They repeated those measures periodically later, so we could see how things were changing.  

 

I agree, just call around to various practices.  You might really like that place and they might be following perfectly reasonable practices.  Some areas of the country are more expensive than others for VT.  Everything in the big city near us is more expensive.  The same thing closer (if we had it in our town) would doubtless be less expensive.  And it can vary regionally.  I've heard of people in other states paying double what we did.  It just varies.  It's no fun to pay for a $$$ eval and realize you simply CANNOT afford the therapy.

 

Also, you can get funny things, like it sounds like Kbutton's doc was doing the therapy.  That can be the case, or it can be therapists, and those might be certified or not certified.  That's another thing you can sort through as you determine whether you're getting a good value for your money.  

[PeterPan]

Ooo, non-profit tutoring?  Definitely go for that.  I was thinking more of the tutoring centers.  Some of them will expect astonishing outlays upfront.  But to go to a non-profit, that can be good on a lot of levels.  It can let him build a positive relationship with someone.  It can let you see how his social skills are outside of the school setting.  It can let you get more feedback on if they're seeing attention, anxiety, etc. going on.  That could be good on a lot of levels.

[kbutton]

Also, you can get funny things, like it sounds like Kbutton's doc was doing the therapy.  

 

She doesn't unless short-handed, but she does checkups throughout the process. She closely supervises the process and makes sure kids are placed with a therapist that is a good fit (I am not sure how many she has, but i think she currently has at least two). I think she trains therapists that don't come trained.

 

She does some of the testing that a visagraph does and compares scores to age norms. I am trying to figure out what the visagraph does that she does not do. 

[PeterPan]

Oh I'm not dissing the doctor thing.  It can actually be really good.  It's just one of those things you can look at as you compare practices.  

 

You could probably find video of the visagraph process on youtube.

[PeterPan]

 

Here's a video to get you started.  So the goggles allow the computer to track the eye movements, then they show that with dots on the text.  The computer then calculates out regressions, line jumping, etc.  It gives them a way to quantify things and say the regressions are more than normal, etc.  The movements happen so quickly on a typical reader, I don't know how you'd just catch them.  Also, with this the person is looking *through* goggles at a screen.  It's really rather nifty.  

 

So, like with dd they could slow it down after the fact and let me SEE what her eyes were doing.  That's when it became apparent that because of her convergence issues (making double images), the brain was blocking and eyes were taking turns.  By taking turns, she was having this really funky line jumps.  Suddenly it became apparent WHY she was resisting moving into smaller print books in spite of reasonable acuity!  

 

It's just a tool.  Lots of ways to skin a cat.  :)

[Tiramisu]

 

His *single sentence* comprehension was at the 28th percentile.  With a 99th percentile vocabulary!!!  So literally he was NOT UNDERSTANDING things people said to him.  Totally, totally blew me away.  The CELF looks at receptive language at the word, sentence, larger, and finally paragraph level.  My ds' scores went up with larger samples, to where at the paragraph level he was pretty close to normal (85th percentile or something).  That wasn't IQ-appropriate for him, but it was dramatically better.  

 

So, OhE, what does this mean? I'm curious because the np said dd was the same. We haven't got the report yet so I'm not sure what tests were done and what percentiles dd got, but she specifically said she didn't do well with single sentences but did very well with longer passages. The longer passage comprehension was a specific strength.

[PeterPan]

Well look up our old threads.  Geodob got me going with some links to explanations on the subtests of the CELF.  Basically though, it's considered an EF issue.  We always think of the secretarial stuff (working memory, self-regulation, blah blah), but META- stuff is EF also.  So meta-cognitition is awareness of thoughts.  Meta-linguistics is noticing the bits of language.  

 

So the short answer you'll get from a psych, from an SLP (and I've asked both), is it's EF.  And what they mean it's it's meta-linguistics, that they aren't noticing the bits.  So I thought ok, if the issue is not noticing the bits, then by gum we're gonna notice bits!  I got a set of cards for morphology that go through all the crazy bits of language, like irregulars for plurals, verbs, that kind of thing.  It's sort of obnoxious to implement and boring.  It was from Linguisystems.  I swear everything Linguisystems sells was born in the desert.  Dry, dry, dry.  I'm not saying the stuff isn't good, but wow it's dry.

 

What I LOVE right now that we're using is the Grammar Processing Program from Super Duper.  It's exactly like the sections of the test as far as what they're trying to get you to do (listen to sentences and point to the correct picture), but what it does is structure it all in a very careful spiral.  Every concept builds, NOTHING is used that is not done with full comprehension (as in EVERY SINGLE WORD in the sentence), and it all just builds very carefully.  He/she, plurals, verbs, prepositions, smaller/larger, everything.  And what's amazing is after a while of that ds started trying to read things!  We had had to pause Barton, because his comprehension was just so barbarically poor, and he just quietly started trying to read things!  Right now, we are not doing Barton at all.  Today he read all the screens on his Wii game!!!!!!!!!  It's Wii vacations I think, and they have all these screens where you meet someone and they tell you a story and welcome you and give you directions on how to ice fish or water ski.  And he was reading, reading, reading!!!

 

The Grammar Processing Program

 

That link is for the one I'm using with him.  They have another, sold as two volumes, that I want to buy next.  I seem to burn through all my money, sigh.  Staples (the office supply store, yes) has some unbelievable prices on Super Duper stuff, or did a bit ago.  I just haven't ordered yet.  It would be worth checking.

 

What I do is I go through the page first for receptive language, reading the line and having him touch.   THEN I reverse it and require him to use the skill expressively, where he has to say a sentence and *I* touch the pictures.  We always use cute pointers to make it more thrilling.  Shaped erasers, figurines, dinosaurs, whatever you've got.  We just have a lot of fun with it.  Although we're having fun, by the time he has to do it *expressively*, that's some serious challenge!  That's when you realize, wow, that's really hard for him to use an adjective before a noun.  Like he'll just break down and start using these other, funky constructions.  And he'll melt down if we do more than 2 pages.  It's really hard for him.  But to me, when I find something that's hard, that means we need to DO it, not skip it, kwim?  

 

So that's why I like that program, because it's actually working really well for us.  It's both building their knowledge *and* working on that meta level, that awareness and noticing of the bits.  I read the sentences REALLY REALLY FAST.  Like I give NO breaks.  Because speech/conversation has no breaks either, kwim?  Like they *could* ask someone to repeat, but more likely they're just going to misunderstand.  So this is therapy.  I read it at full conversational speed, letting things slur, just being really realistic and brutal, no favors or making it easy to understand.  And he focuses and stretches his brain and he gets it.  It's not usually like oh I didn't get this.  

 

And the other thing this program is doing that is really subtle is it's stretching their working memory massively.  Like, we know our other things we do do this, but think about how many digits worth of material you're storing when you're thinking through "The large boy ran and the small girl walked."  He has to discriminate the verbs, the sizes, the subjects.  Just lots of pieces of data there to notice and be very attentive to.  Dd was commenting to me that he is beginning to story tell with very COMPLEX stories.  I haven't even tried to elicit this in our school work.  It's just like ok, I now have this ability to hold 6 or 8 details in my head AND get it out with my mouth AND motor plan, so I CAN tell a story with multiple sentences or AND statements, kwim?  I think that's cool!

 

You can google meta-linguistics and learn more.  A while back I found a blog by a therapist that had neat ideas.  Some of it is stuff like doing riddles.  Well, he likes the riddles and jokes but doesn't understand them.  So we'll just do a few at a time, because we have to explain them and explain why it's funny.  But there definitely are more things you can do to work on that meta-cognitive and meta-linguistics stuff.  I've been doing Hidden Pictures with him.  I'm not sure if it works on that or not, but my gut says they're valuable for something, mainly because when we started he wasn't very good at them.   ;)

 

So, yes, as the passages get longer, our kids comprehend more.  In other words, they use their gifts and fool us.  And yes, I think the severe EF issues and the meta-linguistics stuff is the ASD.  You can go through Super Duper's site and see all the things they mark as being useful with ASD.  I don't know if your dd needs it.  I would just go by your gut when you look at samples.  Your gut will probably be right on that.

Edited February 1, 2016 by OhElizabeth

[geodob]

Hi Meggb,

You wrote that you were 'mainly looking to get help with his handwriting'.

As: 'his handwriting is horrendous. He also has problems with fine motor tasks-worksheets that require him to fit words into boxes, for example.'

 

Though if you look at what is actually involved with each of the tests/ sub-tests,  that he had low scores on?

You will find that most of them rely on good handwriting/ fine motor skills.

For example, with the DAS Nonverbal test?

3 of the 5 sub-tests, require drawing.

The other 2 sub-tests, also use fine motor skills.

 

So that you could really look at the DAS Nonverbal scores, as a demonstration of his 'fine motor difficulties'.

 

Also if you look at the Woodcock Johnson sub-tests?

I would note: 'Visual Matching: 

Participants must quickly find and circle two

identical numbers in a row of six numbers in 3 minutes.'

 

Where given that: ' He also has problems with fine motor tasks-worksheets that require him to fit words into boxes, for example.'

He would also no doubt, have a difficulty with 'circling numbers'?

 

Though with any 'test of abilities'?

Their is often still a confusion between a 'difficulty with an ability', and a 'difficulty with demonstrating an ability'?

 

So that basically what I'm suggesting, is that his 'fine motor difficulties' are the real issue.

 

But given his high DAS Spatial scores.

Also his ability to put Lego's together?

Which also use fine motor skills.

 

His difficulties might rather be at a 'finer level'?

For example, if you pick up a pen, and write an 'o',  that is small enough to fit on page line?

Also observe the fine motor movement of your fingertips, as you form this tiny 'o' ?

While it might seem simple?

It actually requires a very precise coordination of muscles, to form this tiny 'o' on the page.

 

Thought basically with these test scores?

What needs to considered?

Is whether they 'reflect an ability'?

Or 'reflect an ability to demonstrate an ability'?

[Storygirl]

geodob has a good point about the fine motor issues. DS11 has NVLD, and he has definite visual-spatial problems. I'm out the door in a minute, so I'll have to come back and post later. But I remember getting DS's scores and diagnosis and sorting through whether NVLD really described his issues. I think a child with visual processing problems and/or fine motor deficits could struggle in areas of testing and end up with lower scores, but not really have NVLD. Whereas my son's issues in those areas are actually caused by the underlying NVLD.

 

How can you tell? We did take DS to a COVD for a developmental vision test, to rule out vision issues. And in our case, seeing a progression over time has made things clearer for us.

 

With NVLD, there is no set therapy. You just work on the individual areas of struggle.

 

More later. Got to go.

[PeterPan]

You can also have NVLD *and* developmental vision issues.  Just to muddy the waters.  :D

[meggb]

Thanks, GeoDob,

 

I think you make a good point. Does anyone know where I could find examples of the visual matching items online? 

That score is Such an outlier.

It would make sense that part of the issue was making the circle small enough or quickly enough. 

 

[PeterPan]

Meggb, the OT should have run just a normal tool, something like the BOT, and that should have breakdowns.  That's where they get the standardized scores to say yes fine motor issues requiring OT or no.  You'll have standard scores, the standard deviations, and then they have what they're looking for.  (in our area, 2SD to qualify)  So that's a way to compare the scores on what test to another to see what was affecting what.  Longer psych evals will run multiple tests, so they can compare things and see what was affecting what.  

 

There's usually a score sheet for each test they do.  They can give you a copy of the score sheet if you want it for your records.  They may have typed up all the scores and subscores and whatnot into the report, or they may have just cherrypicked the ones they needed to explain their conclusions.  If the whole thing is not in there, then you can just ask.  I had the ps SLP give me a copy of the score sheet for ds' pragmatics test, for instance, because I wanted all those breakdowns to target our work.  OT testing, same gig, will have subsections where you can find what you need to target.  It's also a way to track changes with interventions, so it's just good to have in your files.

 

Did you say they just had him write something?  I've seen that happen.  If they didn't do an actual standardized assessment for motor like the BOT or *something*, then I'd be complaining.  With an NVLD presentation, they should be running that full eval, including an SPD questionnaire.  And me, I just usually ask for things like the copy of the score page.  I'm not sure that's common, but if you ask they'll probably just do it for you.  

[meggb]

So, the OT and the vision person are the same.

 

She had him copy a passage twice for the handwriting part, and she observed his pencil grip.

 

She also did a vision test. He was average on all those items, except for closure, where he was low (Google tells me this is the part correlated to iq....sigh...and one where he had to name things he saw in a picture after she took it away.)

 

He came out one SD below, but you have to be two to qualify. Her primary recommendation was that he learn to keyboard.

 

I should have the whole eval. this week. I'll update all you kind folks if there is something in it I'm overlooking or forgetting right now. I just have a summary of his cognitive scores she gave me at my request. 

[meggb]

One quick update-The psychologist called to update me on his math scores, and he did perfectly average-right about 100 on the nose-on every subtest. 

 

So, I'm more confused than ever, because everything I've read says kiddos with NVLD usually have a really hard time with math. 

 

The psych did say he seemed much more engaged and confident on this test, and she thought some of the very low scores he had might have reflected a lack of attention to the task. I guess he did a lot of erasing on the visual matching, which is a timed test. No idea why that happened.....

 

She did also mention that she noticed he started at the bottom with some tasks, and then went back up to the top, so I will definitely be pursuing the vision therapy angle. I'll let you know what comes of that. Thanks again for all the wisdom and kind words. 

[PeterPan]

Just as an observation, if you had a full WISC (which it sounds like they didn't do), you'd be really close to a discrepancy there on that math.  His verbal was 116 on the test she did.  Usually 10 is 1 standard deviation, so 20 would be 2.  Now usually you're much, much lower, but I'm saying you are seeing *some* discrepancy there, which deserves an explanation.  

 

Yes, ADHD is your diagnosis of exclusion.  Is there any way to get them to run the WISC, so you can actually see how much discrepancy there is?  Or are they using the score they got with that other test?  Again, you even had a 118 there.  It would just be something to try, to see if you can get them to run the WISC.  

 

Yes, that will be really helpful information if you can get that vision eval.  You mean starting at the bottom of the page or the bottom of the line for writing?  I think that just means he's thinking about what is easier, faster, and maybe loses his spot.  

[Storygirl]

I think for you to know whether NVLD is involved, you may need to have some further testing by a neuropsychologist. (Although I did have one person tell me that their school psych told her their child had an NVLD profile, I think it's not something that schools generally look for.) Also, because NVLD is not in the DSM5, many professionals do not diagnose it, so it is something to ask ahead of time if you decide to pursue further evaluations.

 

NVLD is a kind of spectrum condition. People can have only minor symptoms in only a few areas, or they may have severe trouble across all areas. So someone with a mild NVLD could function fairly normally in school and life, whereas someone with severe symptoms will be more disabled by it.

 

I'll use myself as a little example. I was never tested, but I'm fairly certain that I would fit a NVLD profile, in that I have extremely strong verbal skills but some difficulty with math, spatial skills, physical coordination, and social (I have social anxiety). Even though I had difficulty grasping underlying math concepts, I completed calculus in high school (with As and Bs). Also, people with NVLD sometimes have trouble with reading comprehension, but all things literary are a particular strength for me. So, while I suspect my psychological test scores would show a big discrepancy between verbal and nonverbal skills, indicating possible NVLD, I have no learning disabilities, did very well in school, can understand social cues, and was successful in the workplace.

 

Of course, I do not have a diagnosis, so you might say my example is not useful. My real point is that not every person with NVLD is going to have every characteristic of the disorder, and there will be a real range in level of severity, from mild to severe. DS11 has diagnosed NVLD, and in his case, it is severe, and he straddles the line between NVLD and autism. He also has all of the corresponding learning disabilities. He is affected in a different way than someone who is just mildly affected. Kind of like the autism spectrum --  there are kids with high functioning autism and kids who are severely autistic, and there are those in between.

 

So just seeing a score suggesting there could be a nonverbal learning disorder is not really enough information to discern whether the child has a disabling NVLD. It really requires understanding all the pieces.

 

I am totally not an expert, and I'm still learning, almost two years after DS's diagnosis, but here is a list of things that are often involved, to some extent or other, in NVLD:

* Discrepancy between verbal and performance/nonverbal scores on testing such as WISC

* Visual-spatial difficulties -- may affect coordination, ability to understand geometry, ability to follow a map or not get lost

* Difficulty reading body language/ facial expressions/ social cues

* Difficulty grasping math concepts -- possible math SLD if extreme

* Difficulty with abstract concepts in general. Often literal, concrete thinkers

* Trouble with reading comprehension -- possible reading comprehension SLD if extreme

* Trouble with motor skills -- fine or gross motor. Developmental Coordination Disorder (dyspraxia) is often co-morbid

* Sensory issues are often co-morbid

* Some have difficulty with pragmatic language, which affects social and reading comprehension, and, at the extreme end, may lead to an autism diagnosis.

* Social problems -- making friends or keeping them; misunderstanding jokes, becoming socially isolated because they either do not know how to make friends, or because friendships fade over time as other kids think they are little strange, or because they do not mature as fast as others. There are many MANY areas of social that can come into play.

 

People with NVLD tend to be quite verbal and may come across to others at first as being fairly neurotypical. Over time, the underlying issues become more apparent. Some people see similarities to Asperger's Syndrome, though not all with Asperger's or autism have the NVLD profile. Also, the deficits become more debilitating as time goes on, so a child may do quite well in the early grades of school but then begin to struggle in mid-elementary and have increasing difficulty with higher level academics and social. Those who have associated learning disabilities are going to struggle more academically, but the true disability often ends up being in the social realm, due to increasing social isolation with age and trouble performing up to expectations in the workplace.

 

At one extreme, someone with NVLD may just get lost easily, be a bit awkward socially, and prefer subjects that don't require math. At the other extreme, someone could have all of the related LDs and cognitive issues and be pretty disabled.

 

Someone with a very high IQ could have enough of a discrepancy in those scores to have some NVLD traits but still perform very well in life. Someone with a lower IQ, additional co-morbid conditions, and learning disabilities is going to have a harder time.

 

When DS11 was diagnosed at age 9, I wasn't sure that the diagnosis fit him exactly. Two years later, I can check off the whole symptom list without questioning any of it. From our experience, it seems true that the deficits become more obvious over time.

 

If I were you, I would get all the information that you can with the evaluations that have been performed now, and keep reading about NVLD. Your son is 10 now. At age 12, you might see some things that you don't yet. Or maybe not! Just keep an eye on it and watch for increasing trouble, specifically in the areas of reading comprehension, math, and social, which would clue you in to the need to search for more answers.

 

Or you could pursue more extensive evaluations now.

 

By the way, you mentioned that he doesn't seem to have comprehension trouble, but don't his scores suggest that it may be an underlying problem? I'm not familiar with all the tests you list, but I see some discrepancy there.

 

 

 

 

Edited February 2, 2016 by Storygirl

[Storygirl]

I agree with Elizabeth that math scores of around 100 still show a 10-16 point drop from his verbals. Academically, he could end up doing fine in math, better in language arts, and STILL have a NVLD. Remember, social is the area that is generally the most problematic over time, across the board even when there are no corresponding LDs. So keep an eye on the social things.

 

Can't remember if anyone answered your question about this, but social is measured at least in part by pragmatics, which is run by a speech language pathologist. Social covers a LOT more than whether he can make friends (I mention this because whenever I brought up social at my son's IEP meetings, his teacher said, "Oh, he has friends; we are not concerned," and I kept pushing, and then he BOMBED the social pragmatics testing).

 

kbutton has in the past provided a link to a great survey of social issues that is helpful even if just for understanding the scope of what social includes. I can't make a link, but you can search "ocali autism social skills profile" to find this survey created by Bellini. Don't be put off by the word "autism." The form will provide you with a list of things for you to consider as you think about whether your son is impacted by social issues.

[kbutton]

This is the link Storygirl is talking about: http://www.ocali.org/up_doc/Autism_Social_Skills_Profile.pdf 

[Tiramisu]

Besides my little hijack, I've been reading and following, wondering if I should jump in. My dd had her np eval a couple of months ago. I haven't got the report yet and the tests don't seem to be the same as yours, but there are quite a few similarities to your situation, especially with the latest information.

 

In our case all of the sub tests were extremely average except verbal, which was 118. One of the verbal subtest scores was 18. Visual/spatial was 97, so there was that big gap that could indicate NLVD.

 

The np decided that for now, she didn't think it was NLVD because her math scores were too good. Math application was her highest scoring achievement test, and well above grade level.

 

What was surprising is that for someone with higher than average verbal ability, passage comprehension was her lowest academic score, in the average/above average range.

 

The np said that if her math ability doesn't keep pace in the future, an nlvd dx might apply.

 

About the visual processing: She was evaluated by a much loved covd optometrist who felt she could have a visual processing problem, not something that could be helped by vision therapy. The np concurred and told us her the subtests requiring visual processing were significantly lower than any other subtests. She made a comment about how dd was one or two points away from borderline. An OT also did some visual tests. Some visual processing pieces were good but she has problems with figure-ground and in processing complex visual information, especially with time constraints. This reminded me of all the erasing the OP's ds did on the visual matching. The OT even said about dd is that she had an awareness when her answers weren't quite right.

 

Similar, isn't it?

 

The NP didn't give dd an adhd dx, which I had expected. But she recommended using the type of strategies that are used for ADHD, like breaking things down into small chunks.

 

She also said she'll have a hard time processing things that come at dd fast, even though her processing speed is normal. You may want to consider that, too, when you give him information, especially visual information, in teaching and even in how you interact in your family life, so he doesn't get overwhelmed and frustrated.

Edited February 2, 2016 by Tiramisu

[PeterPan]

Misu, are you getting a 2nd opinion on that vision thing?  Visual processing is totally within the realm of VT, and figure/ground specifically will respond well to VT for visual processing.

 

I'm surprised diagnosing under DSM4 is even on the table.  I would want the legal protection of being diagnosed under DSM5, so we can say, for IEP and funding purposes, whether this is an SLD or ASD or what.  In our state, an NVLD/DSM4 diagnosis doesn't get that sorted out.  You actually have to sort out is there an SLD, is there ASD or some kind of social delay, is there ADHD.  

 

[Tiramisu]

Misu, are you getting a 2nd opinion on that vision thing?  Visual processing is totally within the realm of VT, and figure/ground specifically will respond well to VT for visual processing.

 

I'm surprised diagnosing under DSM4 is even on the table.  I would want the legal protection of being diagnosed under DSM5, so we can say, for IEP and funding purposes, whether this is an SLD or ASD or what.  In our state, an NVLD/DSM4 diagnosis doesn't get that sorted out.  You actually have to sort out is there an SLD, is there ASD or some kind of social delay, is there ADHD.  

 

The VT doc just said a likely processing problem. He thought it might possibly be related to the way dd processes light waves, as in Irlen Syndrome, which he believes is very rare and does not treat. He came to that conclusion due to some testing he did with color filters when he was really trying to rule out an eye muscle problem based on specific symptoms I brought up to him, after did everything to rule out eye muscle stuff. He did not do figure ground testing specifically that I remember, perhaps because it did not correlate with the symptoms we were worried about. Not sure.

 

It could be that dd's figure ground problem is related to the processing of different light waves. Not sure about that either. I've had four evals with this guy and two kids have therapy with him. He is a leader in the field of VT, leading studies, publishing articles and winning awards, so I'm not so interested in a second opinion, and I don't think it would help at this point, especially because the OT is working on the figure-ground stuff and is it completely covered by insurance, whereas VT would be out-of-pocket. 

 

Is diagnosing under DSM4 even possible now, technically speaking? Not for official purposes, I'd guess. But a specialist who is used to the previous terminology may still use that terminology it if it helps the family understand the actual condition of the child better--along the lines of using the term Aspergers informally to clarify the flavor of ASD and more accurately describe the collection of strengths and weaknesses a particular child will have. Same with NVLD, I think. It might not be able to be officially diagnosed but it's still a tool for parents and teachers to understand and help a child with a certain collection of difficulties. The child still needs the DSM5 dx to get services, though.

 

I wonder what happens with NVLD kids. I suppose the actual difficulties it creates could be used to dx an SLD. At the same time, an np who thought a child needed services and would be at a hurt without them, might be inclined to give an ASD dx if they felt there was some evidence to justify it, because there is some subjectivity. As in, is the social problem having a serious enough impact on their life, and those complex repetitive behaviors we've talked about before.

Edited February 2, 2016 by Tiramisu

[Storygirl]

For DS11, his qualifying conditions for the IEP are SLD math, SLD reading comprehension (NOT reading SLD, by the way), and social. And ADHD and EF. The school did not dispute the validity of the NVLD diagnosis (given by a NP, not the school) and wrote that his results were "consistent with a nonverbal learning disorder" but that was not the actual qualifying condition for purposes of the IEP.

 

Not sure what they would do for a student with NVLD who does not have a corresponding LD. Maybe accommodations under a 504?

 

 

[geodob]

Misu, Irlens Syndrome is a brand name, for what is actually 'Scotopic Sensitivity'.

 

What is behind this, is the simple automatic operation of the eyes.

If we stare at something, our eyes don't actually stay still?

They make 4 automatic movements, and shift to 4 points around what we are looking at.

 

It needs to do this, because their is only tiny area at the back of eyes, that can see clearly.

So that the eyes take these 4 snapshots each second, and then the brain puts them together. 

Which forms a larger clear image.

Though this is a very precise process, that involves:

1: Movement of the eyes.

2: Formation of the image on the back of the eyes.

3: Transmission of the image to brain, and visual cortex.

 

But a crucial part of this, is that the last image on the back of the eyes?

Needs to be erased, so that a completely new one can be formed.

 

This 'erasure' occurs as the eyes move to next point.

This movement of the eyes, takes about 30 milli-seconds, or a 30th of a second.

So that in this 30 milli-seconds, the last image needs to be completely erased.

 

But with Scotopic Sensitivity, the last image hasn't been completely erased.

Where we have blue, green and red cones at the back of our eyes.

So that the image on all 3 types of cones needs to be erased.

 

Perhaps you could imagine the problem with vision, if the last image hasn't been fully erased, as the next one is being formed?
Though as a problem, it most often an 'uneven erasure'.

Where the 'blue cones' are what cause most problems.

Which also effects males more than females.

 

Though the unfortunate thing with Scotopic Sensitivity ?

Is that Irlens recognized a marketing opportunity?

With renaming and promoting Scotopic Sensitivity, as 'Irlens Syndrome'?

Which has corrupted the whole process, of recognizing a 'vision disorder'!

[Tiramisu]

Misu, Irlens Syndrome is a brand name, for what is actually 'Scotopic Sensitivity'.

 

What is behind this, is the simple automatic operation of the eyes.

If we stare at something, our eyes don't actually stay still?

They make 4 automatic movements, and shift to 4 points around what we are looking at.

 

It needs to do this, because their is only tiny area at the back of eyes, that can see clearly.

So that the eyes take these 4 snapshots each second, and then the brain puts them together. 

Which forms a larger clear image.

Though this is a very precise process, that involves:

1: Movement of the eyes.

2: Formation of the image on the back of the eyes.

3: Transmission of the image to brain, and visual cortex.

 

But a crucial part of this, is that the last image on the back of the eyes?

Needs to be erased, so that a completely new one can be formed.

 

This 'erasure' occurs as the eyes move to next point.

This movement of the eyes, takes about 30 milli-seconds, or a 30th of a second.

So that in this 30 milli-seconds, the last image needs to be completely erased.

 

But with Scotopic Sensitivity, the last image hasn't been completely erased.

Where we have blue, green and red cones at the back of our eyes.

So that the image on all 3 types of cones needs to be erased.

 

Perhaps you could imagine the problem with vision, if the last image hasn't been fully erased, as the next one is being formed?

Though as a problem, it most often an 'uneven erasure'.

Where the 'blue cones' are what cause most problems.

Which also effects males more than females.

 

Though the unfortunate thing with Scotopic Sensitivity ?

Is that Irlens recognized a marketing opportunity?

With renaming and promoting Scotopic Sensitivity, as 'Irlens Syndrome'?

Which has corrupted the whole process, of recognizing a 'vision disorder'!

 

Geodob, Do you think this problem could explain the specific figure-ground problem my dd has? 

 

Also, there is a lot of controversy regarding treatment of it, but do you think any of the proposed treatments work? 

 

What type of specialist could really diagnose this, given it has become a marketing opportunity?

[geodob]

Timarasu, it is figure-ground that it actually effects.

Or more specifically, 'ground'.

 

Where the 'ground', is white paper, or white background on a screen.

White is not a separate colour?

Rather it is formed by a combination of red, green and blue light waves.

 

At the back of eyes, we just have 'Cones' that react to either red, green or blue.

So that when you look at word in black print, on a white page or screen?

The red, green and blue cones, will each form an image.

With the black print, being an absence of light.

So that when we look at a word or letter, in black print?

It is the 'ground' around the letter, that we actually see.

 

Coming back to the automatic 4 movements of the eyes, per second?

The image that is formed with red, green and blue cones, each needs to be erased.

Where of course, their will be a problem, if any of these 3 haven't been completely erased?

As the remaining image, will become part of the new image.

 

But as for a specialist to diagnose this?

You could do this yourself?

What it simply involves?

Is using a page of black printed text, where the background colour is changed.

A simple way to do this, is to one a page of text with the Word program.

 

Then to change the background, to different colours/ tints.

Getting your DD to try reading each of them, and to find out whether any colour/tint, makes a noticeable difference?

For example, the most common problem, is with blue light, and the blue cones.

Where text on a page with an orange tint, will remove the problem.

Also some glasses with an orange tint, will also overcome the problem.

 

Where the main way to treat this?

Is with tinted glasses, that block out the problem colour.

While Irlens and other companies charge hundreds of dollars for these tinted glasses.

 

They could also be bought at a 'sun-glasses shop', for maybe $20.

[Tiramisu]

Timarasu, it is figure-ground that it actually effects.

Or more specifically, 'ground'.

 

Where the 'ground', is white paper, or white background on a screen.

White is not a separate colour?

Rather it is formed by a combination of red, green and blue light waves.

 

At the back of eyes, we just have 'Cones' that react to either red, green or blue.

So that when you look at word in black print, on a white page or screen?

The red, green and blue cones, will each form an image.

With the black print, being an absence of light.

So that when we look at a word or letter, in black print?

It is the 'ground' around the letter, that we actually see.

 

Coming back to the automatic 4 movements of the eyes, per second?

The image that is formed with red, green and blue cones, each needs to be erased.

Where of course, their will be a problem, if any of these 3 haven't been completely erased?

As the remaining image, will become part of the new image.

 

But as for a specialist to diagnose this?

You could do this yourself?

What it simply involves?

Is using a page of black printed text, where the background colour is changed.

A simple way to do this, is to one a page of text with the Word program.

 

Then to change the background, to different colours/ tints.

Getting your DD to try reading each of them, and to find out whether any colour/tint, makes a noticeable difference?

For example, the most common problem, is with blue light, and the blue cones.

Where text on a page with an orange tint, will remove the problem.

Also some glasses with an orange tint, will also overcome the problem.

 

Where the main way to treat this?

Is with tinted glasses, that block out the problem colour.

While Irlens and other companies charge hundreds of dollars for these tinted glasses.

 

They could also be bought at a 'sun-glasses shop', for maybe $20.

 

You are very kind to explain all of this so thoroughly. Thank you very much.

 

[kbutton]

I didn't realize that this had been made into a marketing opportunity with the lenses. In fact, I thought that some people even used colored transparency sheets for reading and things like that. Interesting.

 

Misu--there are fairly inexpensive glasses for hunting/target shooting that have several colors of lenses you can swap out. The idea is that they help you see in different levels of light or in different colored backgrounds when you are hunting or shooting targets. My husband got some for Christmas one year. 

[PeterPan]

I don't think f/g issues always = irlen.  I don't get the impression irlen would respond to therapy, and f/g issues do.

[kbutton]

I don't think f/g issues always = irlen.  I don't get the impression irlen would respond to therapy, and f/g issues do.

 

Could it be that Irlen is a figure ground issue, but not all figure ground issues are Irlen? That's how I was reading this.

[geodob]

Though this specifically effects ground, not figure.

As just one cause, of figure/ ground issues.

 

To understand, perhaps you could simply look at a word?

Where you move your eyes and focus, from the first letter in the word, to last letter, and then to a middle letter?

Which was probably quite simple.

 

But an important thing, as you moved your eyes from the first, to the last, to the middle letter?
Is that as you move your eyes from the first to the last letter?

That the image of the first letter, formed at the back your eyes?

Is erased, so that a new image can be formed.

 

Perhaps you can imagine the problem, if when you move to last letter, the image of the first is still there?

So that they both merge into an overlapping image?

Then when you move to the central letter?
The previous 'overlapping image' is still there?

So that you a combined image, from 3 different viewpoints?

 

Where we come back to these automatic movements of the eyes each second?

Which don't only go 'let-right-middle'?

But also go up and down as well.

In a pattern of movements, in just over a second.

 

Though the eyes need to make these movements, because the clear part of vision on the back of our eyes?

Our Fovea, and extended Peri-Fovea. Is only 3 mm's, or 1/8 of an inch wide.

So that we only to see about 2 or 3 letters clearly at once?

The eyes need to look around a word, and our visual cortex put the snapshots together, to form an image of the whole word.

 

With the 'white ground' that you see around letters/ words on this page?

Their is nothing on the back of eyes, that see 'white'?

Rather when the red, green and blue cones on the back of our eyes. Are equally activated.

Their combination is what we percieve of as 'white'.

 

Though coming back to this problem of the last image not being erased, in time for a new image to form?

What is actually being erased?

Is the separate images formed on the red, green and blue cones.

Where the most common problem that people have?

Is just with blue cones image not being erased.   

The red and green cones being fine.

This can be resolved, by simply blocking out the blue light reflected from a white page?

So that no image is formed with the blue cones.

Glasses with an orange tint, will block the blue light.

 

Which could simply be resolved, with a $10 or $20 pair of tinted glasses!

[Tiramisu]

My dd's biggest complaint was with print moving on the page, especially in algebra type of problems. That seems to make sense for me because there is even more moving of the eyes back and forth than with reading.

 

The other thing is that it seems more of an issue in fluorescent lighting. I don't know how that would fit in, except that fluorescent light flickers.

[kbutton]

My dd's biggest complaint was with print moving on the page, especially in algebra type of problems. That seems to make sense for me because there is even more moving of the eyes back and forth than with reading.

 

The other thing is that it seems more of an issue in fluorescent lighting. I don't know how that would fit in, except that fluorescent light flickers.

 

Lots of people with normal vision find fluorescent light to be very annoying--I hate it, and I don't have any visual issues. It drives me nuts and things just don't look the same. If you have anything visual going on, it probably exacerbates it. I have no scientific basis for this, but I know that my mom finds fluorescent lighting to be very problematic. She does have some visual/motor issues, but they are mild. Her biggest problem is a whopping astigmatism--very heavy duty stuff. Lots and lots of people who are sensitive to changes in their environment (visual or otherwise) loathe fluorescent lighting.

[geodob]

I wrote earlier, that the most common problem is with 'blue light'.

Where the blue cones at the back of the eyes, are slow to erase the last image formed.

But the problem with fluorescent lights?

Is that they only emit 'blue light' !

So that they are the greatest problem.

 

Though a side issue related to 'blue light'?

Is perhaps you have heard of 'Melatonin', which we naturally produce and is what puts us to sleep, and keeps us asleep.

The production of Melatonin, has an 'on/off' switch, which uses the blue cones on the back of our eyes.

When the blue cones don't recieve any blue light?

Then it switches on production of Melatonin.

The intense blue light emitted by computer and tablet screens, has been well established as causing 'sleep disorders'?

If used just prior to going to sleep.

Though blue light, can be filtered out by glasses with an Orange tint.

 

So perhaps you could print out a page, with text and some algebra problems on it?

Then take it to a sun-glasses or glasses shop, and look for some glasses with an orange tint?

Then get your DD to compare them?

If they have glasses with different degrees of orange tint?

These could also be compared?

As a stronger orange tint might be needed for example, under fluorescent lights?

 

Where you might find that the problem is resolved by a $20 pair of orange tinted glasses?

 

Also in regard to 'fluorescent light flickers'?

A major issue with this, is that a flicker rate of between 13 and 20 times a second, can cause seizures.

Though for some people, 3 times a second will cause them.

[meggb]

Op here.

 

Thank you all again for your thoughts.

 

Just wanted to update that we saw the eye doctor today (COVD guy). I wouldn't have believed it if I hadn't seen it (no pun intended-lol), but our son is apparently seeing double much of the time. I swear to you I asked him time and again and he denied it. 

 

So, we are optimistic that vision therapy will help, and that this problem explains some of his scores. 

 

We have also found a tutor who is going to do Barton spelling with him via Skype (she is in another state). I'm hopeful that since it relies on learning rules rather than visualizing it will be helpful. I do have a call scheduled with a neuropsych as well, because I feel like I still need guidance as to next steps.

 

My husband is convinced that the vision therapy is the answer and feels like we already have a miracle in the works. I'm not sure it explains everything (I'm naturally skeptical and fearful we're getting our hopes up because it's what we want to hear), but I'm feeling more hopeful. I have also found a really good fb group for parents of NVLD children; if any of you are looking I would recommend it as a resource. 

 

And we're going to try an after school group known for quirky kids. He is in Scouts now, but it has never been a great fit. 

 

I think that's all for now....I'll let you know when we have more updates. Open to other suggestions for sure! 

 

 

[PeterPan]

First, that's fabulous that you connected with a good dev. optom. and were able to explain part of his challenges!  You might find that his probable VSL side kicks in with the VT.  You could consider waiting on the tutoring.  You might find at that point another method fits him better or that you're just as comfortable teaching him yourself.

 

Did the doc give you a time estimate on therapy?  My dd had noticeable jumps by 2 months in, and after her therapy was completed she continued to have major, dramatic changes for many months.  My dd also found VT very fatiguing on it.  Personally, I would suggest you focus on the VT and not begin Barton at least for a few months.  Have you done the Barton pretest or any placement tests yet?

Edited February 11, 2016 by OhElizabeth

[meggb]

He said it would be 7 months of therapy, but we would probably see improvements after 3 or 4. 

 

I don't know if that's too much or not....It's once a week in office with home therapy. I'm sure I don't need to tell you that it is not going to be cheap!

 

Good point on the Barton. So far we've just done a, "Getting to know you," phone call. 

 

I'll have to think about it. Naturally, I want to fix everything for him as fast as I can! 

 

Thank you for the thoughts!