NVLD and reading

Sounds like my son. He has very high verbal skills and severe decoding and spelling difficulties. We recently had testing done to make him eligble for accomodations in college in another year. On the verbal IQ score there was a 52 point difference between the verbal IQ and the working memory score-or some such… I don’t have the testing in front of me. The school psychologist included statements that she felt he has NVLD. My previous experience had been like yours, kids who read very well, but had visual, social and motor symptoms. My son loves audio books, has an almost perfect memory for information that he hears, does stand-up comedy and has dictated a novel. Finally, many professionals see NVLD as another term for autism spectrum - aspergers.

There are lots of different kinds of learning disabilities.

A NVLD diagnosis means that there’s a problem — but not in processing verbal language. That covers a wide range — kinda like a “coordination” problem. SOme of the issues may be along the autism spectrum — but there are some nonverbal issues that are pretty specific. Humans just aren’t simple.

You could score wickedly high on the WISC verbal stuff… and still have an auditory processing problem so that translating those letters into language is ‘way more difficult than it should be. If your parents have provided you with a language-rich environment, then especially early on you’ll do peachily on the orally delivered WISC stuff. Vision issues could also make reading hard despite otherwise stellar verbal abilities.

I’ve worked with very highly verbal students with major decoding problems. In some ways it’s more rewarding because once you get past the decoding barrier you get to work with strengths that your “classic” dyslexic may not have. (On the other hand, there are fascinating comprehension issues that crop up when linear verbal thinking is fine, but seeing relationships and the ‘big picture’ is tougher).

Books like Mel Levine’s “Educational Care” are excellent for approaching individual minds and their individual issues constructively — full of great ideas for working through and around problems that sometimes defy a clear label.

A vague suspicion — are these poor kids suffering from a weak “whole-language” curriculum?

I say weak, and I continue to put “whole-language” in quotation marks, because the curricula that actually got watered down for most schools are not at all what the original WL people promoted. I may not prefer some of their approaches, but they were responsible. Unfortunately what happened in a lot of schools left out the vital parts.

Anyway, my point here is that a weak memorize-and-guess approach is about the worst possible choice for NLD type thinking. My own family has never been diagnosed but many of us have a pattern that looks a lot like NLD; those of us who were taught to read at home have done very well in school, and those who were left to the school system have had poor to disastrous school careers, extreme underachievers, kids who were gifted in primary and then in high school either dropped out or barely passed the basic non-college graduation.

If your kids get some help using a logical analytic/synthetic approach, their gifts may be able to shine through.

Hi,

As an adult with NLD/ADHD who possibly may have dyslexia, unfortunately, there is still a myth that NLD can’t exist with anything else. I don’t blame you at all for that but I want people who read this thread to put this falsehood to rest permanently.

I only have mild decoding difficulties but the problems are still quite troublesome and definitely affect my reading. Still, I feel fortunate when I read posts like yours where the situation could be alot worse.

PT

Thanks so much for all the feedback! I guess it is just a lot more complex than what you typically hear about. I hope more research is done on this. PT1, was it an IQ discrepancy that warranted the diagnosis?

As far as the poor instruction idea, I’m not familiar enough with one case; the other, I know the child (who is eight) has received LMB and O-G pretty intensively in his school. I also gave him the CTOPP and his scores were quite varied, though they do show a phonological deficit: straight blending tasks, RAN were little or no problem; phoneme manipulation tasks (elision and phoneme reversal) nearly impossible. Maybe that goes along with his visual-spatial deficits. Memory for digits was weak, too.

Victoria, could you elaborate on the NLD thing for you? If it’s not the right place to do that, no problem. Thanks again.

Request for details about our looks-like-NLD syndrome: Sure. I’ll talk about myself any time. Just try to keep me to a reasonable minimum.

Many of the people in my family — self, daughter, brother, mother, niece, nephew — fit so many of the traits listed for NLD that it’s frightening. None of us has ever been formally diagnosed; maybe the next generation upcoming soon [niece-in-law expecting next month :) ] will get some better education, but you never know.

— early and good talkers (Believe it or not, I and my daughter are the *quiet* ones of the bunch — you should hear the others …)
— considered gifted in primary
— those (self, daughter, mother) taught to read at home continued to be gifted, those (other half) left to mercies of school ended up as underachiever or lowest vocational track or dropout
— those (self, daughter) taught math concepts at home were good to gifted in math, those (two-thirds) left to mercies of school had real trouble and failed math.
— pick up second languages very easily if approached logically; resist them if approached with guesswork — resist guesswork and vagueness in general
— some (daughter especially) gifted in music
— linear and literal thinkers in childhood, although we become more able to deal with nuances with time
— all have real trouble with directionality, frequently get lost, take wrong turns, have to ask for directions to be repeated. Some (self, daughter, mother at least) even as adults have to think twice to find the right hand.
— all have real difficulty with order issues, have to use coping skills (make and recite lists, etc) to keep things in order
— many frequently reverse phone numbers etc.
— all use coping skills (hand gestures, closing eyes and moving hands or head, etc.) to deal with spatial issues; can become quite good with tools and such, but a long learning curve
— even the math gifted ones (me especially) use coping skills such as enumerating on fingers, counting mentally, visualizing and pointing, to deal with relatively simple order tasks, ie what number goes with which month or what the date next Monday is
— all a little vague about time; one (daughter) at age 21 is still learning to use an analog clock, although she passed calculus at 16 …
— have various different social skills problems, some withdrawn, some very social but with the underachieving/troublemaker group — don’t deal at all well with subtleties of social cues.
— because we are already working at the limit of our abilities and using intense coping skills to meet low-normal expectations in such things as finding our way, dealing with schedules, organizing tasks, etc., we tend to frustrate easily and blow up quickly when extra demands are added, too many changes are made, or instructions are vague. This is interpreted by people not in the know as bad temper or arrogance, more social trouble.
— some (I note this particularly with daughter) can only deal with one instruction at a time; none are good with more than two or three steps orally (again, this includes me with four university degrees, brother who was air traffic controller, mother who ran offices and was president of Navy veteran’s society — we CAN deal with things, just in small chunks)
— not exactly clumsy, in fact quite good at some sports — but not much as teams, mostly individual — but we tend to be accident-prone, a lot of falls and bumps and moving the hand to the wrong place at the wrong time
— at least my nephew and daughter agree with me on this one, we seem to mature very slowly physically and emotionally, although we’re quick mentally.

We fit nearly every category of the NLD diagnositic list except in general we’re pretty positive and cheerful people; I worry about the websites that take a negative view and may discourage parents.

If anyone wants advice on educational methods that have worked for us, I’ll be happy to oblige.

PS — another character trait that runs very strongly in the family, visible from earliest infancy (age five days!) so we know it’s heredity and not environment, is extreme stubbornness. Pig-headed is far too mild an expression. Don’t know if this might relate to NLD or not.

This is not exactly oppositional behaviour, because we can be just as persistent about good things as about bad; going to read this book to the end even if it takes to dawn, going to finish painting this room today even if I eat supper at 11 and can’t walk tomorrow, etc. Given a little direction it’s a real drive to succeed — for one example, my mother smoked heavily during World War Two, as did most service people; then she saw the cigarettes making me sick and she stopped a two-pack-a -day habit immediately, cold turkey — not an easy feat.
On the other hand if misdirected it can become oppositional; one of the family members got into a lot of trouble at school, needed more challenge and harder work, the opposite of how they tried to help.

Anyway, I can also give advice about the determined child/student.

Hi Victoria; thanks for going through it all. Best wishes for the impending arrival of the newest member of your family! :D Now, in all of that, with all your strengths and successes in life, do you really feel as though it adds up to a true disability, or just quirks that get in the way? Not that I’m discounting your condition at all, but at what point do you think this profile becomes one of a disabled person? I know so many people like this. I really don’t know anyone (other than my husband, believe it or not) who is wonderfully socially, academically, physically and emotionally balanced. Most people I know, in fact, are great in one area, not so great—even lousy—in another. Some are charismatic computer whizzes who can’t maintain romantic relationships because of their obsessions; others are socially and academically gifted yet crummy at physical activities; my brothers are great athletes and teachers who are impulsive and bad with money. (Thank goodness for my mom, who is a financial genius!) Personally, I’m awful with directions, ok with words, terrible with numbers. I know I may really be missing your point here. It’s the global nature of this thing that is getting to me—it seems to encompass everything!

Subbornness — would that be clinically called rigid thinking — or even perseveration when you’re locked into getting that book read… and yes, it’s a common part of the picture.
I had a fellow come in — getting an A in his math course, but frustrated to the point of walking out of his class. Why? BEcause his previous math teachers had said, “change improper fractions to mixed numbers.” This teacher had said, “You don’t have to change improper fractions to mixed numbers.”
I explained the mathematical reasons why you might not want to change an improper fraction to a mixed number — if you’re going to go on and multiply it with something, for example — and he was fine. And indeed, that rigidity came in handy as often as not in other situations.

That was me :-)

When is a personality characteristic a disability?

Some of it’s pure semantics — it is when it makes it so you aren’t able to do something that really messes with your life… but in those psych classes they tell us to look at frequency, duration, and intensity. (As the lunatic who taught psych in my high school said, “everybody picks snarvlies off their sweaters. When you have to do it, all the time, and you HAVE TO HAVE TO HAVE TO do it… that’s a disorder.”)

Now, if we could get our little minds out of disorders and disabilities, and focus mroe on positvely spinning our eccentricities, and get everybody out riding their bicycles :-)

Guest, you’re hitting on something that I’m wondering; when is this a “clinical” issue? How adversely affected with these things do you need to be to be considered disabled? Certainly persistence can be a wonderful thing, of course, separate from obsessively and uselessly fixating on one idea or behaviour. I “get” that separation—it’s that the whole NVLD profile seems to fit so many relatively well-adjusted people.

Hi Sue,

I didn’t read your post before my last one. Very well said!! Cheers!

THe really tough part is that the *same* person can be disabled or a genius… depending on the situation and the support system. _Exceeding Expectations_ about highly successful LD folks (with pretty rigorous definitions for both success and LD) delved into this. Figuring out what “supports” will be the most help while cultivating a positive approach to persistence is a real art.
And sometimes it really is dumb luck… and it takes a lot more than pure persistence. I work with some folks with genuine “magical thinking” — they really think their persistence is going to get them to that architecture degree or Ivy League college because they’ve heard about somebody with similar odds to theirs that did it. However, they are seriously lacking in necessary skills to *achieve* the steps they’d need to take to get to the goal… and don’t make the connection between them. No, they’re not passing developmental courses because the teachers don’t like them… but they’re not going to give up, either…

Where does it cross the border from a personality quirk to a disability? Well, it’s a hard thing to draw an exact line, but yes when it interferes with functioning normally in life, it’s a disability.

There are obvious cases, like the relative with IQ 160, supportive family, nice personality and tons of friends (but mostly guys you would meet at the garage), and a Grade 10 dropout. Clearly something went wrong here.

Another one, good in school and scholarship winner but makes self-destructive financial decisions.

Another person, not a blood relative, whom I suspect may be undiagnosed Asperger’s; brilliant mind, IQ off the charts, fantastic educational career, and then unable to meet any of his professional or personal goals since then; can’t get the kind of job he wants and stuck in a place he doesn’t want to be, not one friend outside work acquaintances, can’t manage a long-term relationship with a spouse, very lonely and becoming less and less able to deal with people as time passes.

For myself, I hold myself back because of my difficulties with organizing and dealing with paperwork and doing business in a timely manner, and I continually put my foot in my mouth in social situations and worse yet sometimes business situations; it may not be to the level of disability but it’s a real weakness, more than a quirk.

The problem with this is that it’s not only a hidden weakness, but coping skills can bring you close enough to normal that nobody sees how hard you are fighting; in fact the harder you work to overcome it, the worse people treat you. Very few people would scream abuse at a blind person because he is taking a long time to cross the street, but I get constant and extremely hurtful criticism because I misjudge time or don’t dress like people want me to or don’t play team sports. I lose out profesionally and socially all the time because I don’t fit the mold people want me in; not just the little things that everyone has, but losing major jobs and contracts, not being accepted into academic programs, financial trouble with the mortgage (seriously, the bank lady can’t stand my style and keeps refusing to meet me), etc.

From my point of view, I asked a straightforward question - teach my son to read. Instead I have gotten all kinds of diagnosis and that is about it. We like our son - he is bright, caring, hard-working and reading is hard and writing is harder. He is learning how to manage and get the job done. The small private school has given him a place to be challenged and successful. It has provided opportunities because when you get to know him you are happy to help him. But, very few out in the big world, professionals especially, want to get to know or help a young boy who could not read. We continue to teach him and prepare him for a world that should look at h is strengths and his talents and I see no benefit to a diagnosis without a practical plan of action.

Well, as I said before, my goal here is to offer practical plans of action. Tutoring notes are available at [email protected] and I’m finally up to date on sending them.
If you would like personal advice on coping skills that do work for me and my family, I am also very happy to oblige.

<<Thanks so much for all the feedback! I guess it is just a lot more complex than what you typically hear about. I hope more research is done on this. PT1, was it an IQ discrepancy that warranted the diagnosis?>>

Hi,

I assume you’re referring to the NLD diagnosis?

As an FYI, an IQ discrepancy doesn’t necessarily mean NLD. But to answer your question, I had that and very low scores on tests measuring visual/spatial and motoric skills.

Also, the neuropsych said I missed some social cues in his office and the fact that I scored low in picture completion indicated problems in that area.
While my social skills aren’t on the par of an NT, I think this guy wasn’t looking at the total picture. I couldn’t have been that horrible as I did win an award at work twice that is voted on by co-workers.

I realize that no one fits a diagnosis perfectly but i honestly think I deviate more than usual from the typical NLDer. But I still think the diagnosis was accurate.

PT

A friend has an eighth grade son who does well in school (except for his handwriting), is well-liked by peers and adults, and doesn’t appear to have any social skill deficits. He was recently given a WISC III and was found to have a 52 point discrepancy between verbal (127) and performance (75). The only apparent issue was the handwriting and the teachers felt he had an “attitude” which was really apparently his frustration with not always getting spatial concepts.
Have you ever seen anything like this?

[quote=”Angela in CA”]From my point of view, I asked a straightforward question - teach my son to read. Instead I have gotten all kinds of diagnosis and that is about it.

Angela, I would love to be of help if I can. Can we talk? Post if you wish.

[email protected]

Thank you all for your support, especially Victoria and Arthur’s off ers of help. Honestly we have come far and his reading is better. My objective has always been to address both sides of the coin; teach my son to read and allow him to get an education in the meantime. He is still getting daily reading instruction at school and twice a week tutoring at home. He now reads video game magazines without my help (usually), read his driver’s permit test alone. But…..reading is a hard task. One he can do when he needs to, but not the automatic task that I experience. He has found ways to cope. Great memory for verbal information, love of audio books, willingness to tackle tasks like the SAT and AP English exam. (He did have a tape/reader and there are no accomodations for the AP writing). I cannot at this point start at square one with another new program. It’s just a lingering bitterness that at the time we needed help, very few, could do any more for us than a quasi-diagnosis perhaps recommending programs that were not available. This summer he will tackle speech recognition software and senior year will be another step towards the independence he will need in college. Yes, I’m looking at 4 year small liberal arts colleges where he can live and learn and grow. LD online is my support system. A place where people know my struggles and my hopes. I appreciate having like minded people to talk to and as always, my husband and I make a path for our son as we teach him to make one for himself.

Angela,
Have you looked at the IPod for downloading books in an MP3 format? Very quick, easy and convenient. Can take the MP3 player anywhere. The beauty of the IPod is it has a very large storage capacity and you can add a digital recorder so that your son can input anything - for notes, reminders, homework assignments, etc.
you can also listen to books in the car, etc. Besides being a very cool tool for listening to music, it’s great for kids with LD issues.

Angela,
Have you looked at the IPod for downloading books in an MP3 format? Very quick, easy and convenient. Can take the MP3 player anywhere. The beauty of the IPod is it has a very large storage capacity and you can add a digital recorder so that your son can input anything - for notes, reminders, homework assignments, etc.
you can also listen to books in the car, etc. Besides being a very cool tool for listening to music, it’s great for kids with LD issues.

so sorry about the double post.

The whole technology thing is difficult for me/us to manage - so many things, what to do, how to do it…I will look at the ipod. Thanks. We have a good/fast computer-so I downloaded universal reader which has worked well. I would like Kurzweil, but can’t afford it yet. I have seen bookshare.org and wonder if that works with an MP3 format. I have more looking to do and get some good info on the technology forum. Senior year I plan to push him hard for independence. College will depend on that. Thanks for the suggestion.

Angela,

My 11 year old son has the same profile as your son. He has nonverbal learning disabilities, dyslexia, motor issues as well as a host of other issues.

I guess I just wanted to say that I think there is just beginning to be understanding of kids like ours—they don’t fit the stereotypical profile of a dyslexic. I think that this profile is a difficult one—I know our Neuronet therapist has told me that the kids she sees who have the most resistant reading problems have motor based issues. Your child may have fallen in the crack between when people could diagnose and when they knew what to do.

He is very fortunate though to have many talents and parents that will move the earth for him. He will be successful in life.

Beth

Beth, Thanks for the encouragement. You know, I don’t really have a problem with the fact that many did not know what to do. After all, I am a special ed teacher myself, and I did not know how to teach reading to a child who had not learned through conventional methods. But I educated myself and read about the research and the programs. Then I tried to implement those programs for my son AND for my students. While I did cause a little change, it was frustratingly slow. Now, I am incredibly grateful to work in a district with an intensive, innovative program. Still, I see children who, like my son, may never be the best readers or read to match their intellectual potential. So, I am tired but the path is still long. We have come a long way, by God’s grace and sheer will. Our son had an excellent year at school. He feels good about his reading improvement and through his own decision stays with his after school reading tutoring. His summer plans include learning speech recognition and working on college essays. I am reading about colleges and support services and planning and plotting. As always I appreciate the chance to talk. Take care.