Wednesday, November 28, 2007

Nonverbal Learning Disorder

A few weeks ago (may have even been a few months-I'm waaaaay behind) Teri brought to my attention that older preemies seem to be struggling with Nonverbal Learning Disorder (NLD) and maybe it would be a good blog post. I have heard this term for at least 5 years due to being on an on line support group for school aged preemies. I have heard it mentioned here too, by both adult preemies and parents of older preemies. I have even looked it up, on numerous occasions, while helping other parents.

So, can someone please tell me why I never realized that this is exactly what is going on with Paige? I feel like an idiot. I started researching NLD for this blog post and found myself staring at the screen, dumbfounded that I am just now figuring it out.

According to all of the reading I've done over the past 3 days (and believe me, I have not stopped reading) the characteristics of a NLD child are as such...

* Above average reading skills. They are often early readers.
* Above average language skills. They talk like mini adults.
* Above average rote memory.

* Socially they struggle because they are not able to understand non verbal communication.
* NLD kids have difficulty in math and reasoning skills.
* Difficulty with visual and spacial functioning.
* Poor handwriting skills.
* Problems with balance and coordination.

Paige fits these characteristics perfectly. Some of the websites out there listed examples and I swear they were writing about Paige. One example that was given (I cannot recall which website-brain overload here!) was that NLD kids are literal children. OMG!! We have called Paige "literal girl" (goes to the tune of Madonna's "material girl") for years!

The best source for information, that I have found is
http://www.nldontheweb.org/ Please speak up if you have a better source as I am scrambling to find as much info as possible.
This discovery is just one more example of how it is imperative that preemies are studied past the age of 2!
A big thank you to Teri for the post suggestion and reminding me of a study that Helen had mentioned...
Now I'm back to that place that is so familiar..... where do I go from here?

32 comments:

Helen Harrison said...

To Stacy,

Thanks for reminding me of a study I once cited, but have long ago "lost" in my files.

I never really thought of it this way either, but my son Edward also has many aspects of NVLD, along with a low IQ (59).

He was a very early reader (age 2).

His speech can be fluent (at first), but it consists almost entirely of memorized phrases.

He memorizes newscasts and books and "speaks" in several languages. But there isn't much real interaction.

Studies of children/adults with enlarged ventricles (i.e., preemies)describe what is referred to as the "cocktail party syndrome" in which the child/adult can converse quite glibly (but without normal give-and-take).
The literalness of their perceptions soon causes communication and social problems.

Ed is *very* literal. He gets upset, for example, when he learns that a word can have two different meanings, and that's just the beginning... forget about humor...

He has CP, and although his balance is fairly good, his fine motor skills and handwriting are definitely pre-school (at age 32 years).

He has some excellent splinter skills in math -- can do arithmetic in his head more quickly than anyone I know -- sort of like Dustin Hoffman in "Rainman," but it doesn't translate into any kind of real-life skill (and, yes, we've taken him to the casinos in Nevada. He played for a while with a slot machine, then asked to go home. He may be retarded, but he's not stupid.)

He is, however, a near-genius (IMHO) when it comes to music, and it is here that he excels and communicates.

I notice that Paige is also a musician. I would strongly encourage anyone with an NVLD child to go for music instruction. It can be a wonderful way for children to get around the limitations of NVLD and other problems of prematurity. It has meant the world to Ed and to us.

Anonymous said...

Stacy, It is unfortunate that many school systems do not seem to acknowledge NVLD much less know how to deal with it in the resource or regular classroom. The special ed professionals here know very little about how to work with an NVLD child. One of my preemies tested about 30 points apart in verbal and nonverbal skills with subtest scores in verbal ranging in the 90-plus percentile to subtests in the nonverbal dropping to the teens. Guess who caught the discrepancies? Me! On his evaluation, the psychometrists never mentioned that the differences could be due to NVLD and cause learning problems. But I began researching it on the Internet just as you are doing now; yet my concerns were mostly dismissed by school personnel since he was performing at an average level. Thing is, when the high verbal abilities are combined with low nonverbal ones, you get average! Yet, these children are anything but average! My child was in the gifted program due to his verbal abilities, but he couldn't copy homework assignments from the board or write his name legibly...still can't! Yet, because he performed well on an NVLD screening, he was determined not to have NVLD by the school system. I have read that any child with more than a 15-point spread between verbal and nonverbal is considered to potentially have severe NVLD. What this means is that the two sides of the brain are not communicating efficiently.
My kid scored in the 91st percentile for verbal math skills but in about the 15th for block design. I think that kind of explains why he could do math in his head and get the correct answer but had trouble getting the right answer when he had to show his work on paper.
Socially, while he is an introvert, he is not what I consider to be literal. He has good humor and insight about things. But he really hates crowds, parties and even going out to eat. He prefers going to movies or to a friend's house to play video games.

delightful-d said...

Do you find that the comprehension of the reading is lacking also.
Our son (premie/aspergers) fits the char. also. He reads well, but his comprehension of what he has read is behind.

The Preemie Experiment said...

Paige scores very high on reading comprehension but I feel it's because the material she reads (or is given to read) is factual. When answering questions that ask specific recall, she does excellent. If the questioned is phrased in a way that she has to "infer"... forget it.

For example... last night her homework entailed reading a paragraph on penguins and how the fathers are responsible for the egg. The paragraph contained specific examples to show the father's role. She then had to answer the following questions...
1. What was the main idea of the story.
2. Give 3 examples that support the main idea.

Paige was lost and VERY angry. After I helped her with the 1st question, she had no problem doing the 2nd question. The first one required her to infer while the second question asked for recall of the facts.

I think we are in for a long road with school. I am hoping that some of our former preemies will offer some insight as to what helped them.

medrecgal said...

Stacy,

Interesting that you should mention this problem that's been at the crux of my existence for as long as I can remember... According to the extensive literature I've researched, NLD is what happens when there is malformation or damage that happens primarily to the right hemisphere, and it is not uncommon to find it in preemies and/or those with certain types of neurological problems in their history (for instance ACC or shunted hydrocephalus).

I was in college before they properly realized I had some sort of unusual cognitive "glitches". While I was reading post-grad level materials at the age of 9 or so, I was most of the way through my second college degree before I had enough intensive help to get a grasp on basic algebra. What helps the most is the chance to literally talk my way through anything I must absolutely retain. (This is not only verbal but auditory, which is the modality that works best, as opposed to visual. Another hallmark of NLD.) Also...post-it notes are my best friend, because my memory stinks in some regards. Concrete ideas are far more comprehensible than things like math, though that's not always true for those of us with NLD.

I could tell stories about this "syndrome" to no end. What's really helped my state of mind at times is being part of a Yahoo group or two for those with NLD and those who love them. Sometimes that's my only link to sanity!

Ex Utero said...

Stacy,

a very interesting post. Got me to doing a lit search, because I also did not realize that that they've put together an umbrella diagnosis for this - but at first blush I too
think it might make sense. I found the abstract below but couldn't access the whole study from home. It makes me suspect there probably is an association between NVLD and extreme prematurity. I think it would be a good thing in the discussion of the good and the bad about neonatal outcomes to someday have an outcome entity that we recognize as 1) ambulatory, 2) conversant, 3) able to read and write, 4) capable of meaningful interaction with loved ones but 5) challenged in daily living activities due to NVLD. Perhaps someday this will become a standardized outcome category.

Based on this study, it did not seem that early intervention changed NVLD incidence, but it did improve verbal learning disabilities (which are more likely to be social and economically affected as well).

Matern Child Health J. 2006 Jul;10(4):329-38.Click here to read Links

Behavioral problems and the effects of early intervention on eight-year-old children with learning disabilities.

Yu JW, Buka SL, McCormick MC, Fitzmaurice GM, Indurkhya A.

Institute for Health Policy Studies, University of California, San Francisco 94143-0936, USA. Jennifer.Yu@ucsf.edu

OBJECTIVES: 1) To investigate the comorbidity of verbal and nonverbal learning disability subtypes with several domains of behavior problems among 8-year-old children. 2) To determine whether receipt of an early intervention modified the association between childhood behavior problems and learning disabilities (LD).

METHODS: This is a secondary data analysis of the Infant Health and Development Program (IHDP), a randomized clinical trial of an early intervention provided between ages 0 and 3 involving 985 children born low birthweight and premature. The findings are based on a prospective follow-up of these children at 8 years of age.

RESULTS: Compared to children without verbal LD (VLD), those with VLD were twice as likely to exhibit clinical levels of total behavior problems and 89% more likely to exhibit externalizing behavior problems. Analysis of specific subscales of behavior revealed significant associations with anxious/depressed and withdrawn behaviors, as well as an increased likelihood of attention problems among children with VLD. No significant association was found between nonverbal LD (NVLD) and any type of behavior problem. Furthermore, there was a significant interaction between VLD and the intervention, in which the odds of internalizing behavior problems were greater among children with VLD. No interaction effect of the intervention occurred for any type of behavior problem among children with NVLD.

CONCLUSIONS: These findings provide evidence that distinct differences exist for different learning disability subtypes with regards to behavioral outcomes and the effects of early intervention services among 8-year-old children.

chriskeller said...

Yes. Vic was diagnosed, at age 7, with NLVD via a neuropsych eval. The school psychologist asserted that Vic could not have NLVD because his I.Q. was too low, but the neuropsych eval contradicted the school psychologist. (I had guessed at this diagnosis at age 3 or 4--Vic was hyperlexic, as Ed was, at an early age. Then, through the hydrocephalus support list, hyceph-l, other parents sent me to the web sites that Stacy has mentioned . . . and it seemed like they were describing Vic to a "t".)

NLVD is an LD that has only a 1% occurrence rate, according to some of the web info. I think it is more prevalent--and like Stacy, it is parents, searching for answers, who suspect NLVD and then find the right person/test that finally confirms the diagnosis. This may happen years after a parents feels there is just something that is off here, and I/we aren't figuring out exactly what it is. It is a bit like Aspergers/autism, a bit like ADD, but it is something else, as well . . .

I have Byron Rourke's books, about right-brain damage and NLVD. Rourke's theories have been challenged, but like Stacy, I have seen Vic fitting the profile pretty closely. (Beware, Rourke is pessimistic about the outcomes.)

In order to bring the teachers up to speed, I have collected articles in a binder, and I ask, at IEP meetings, for each teacher who deals with Vic to read this background info.

For Vic, his disregard of non-verbals has improved over time--he is now 12 1/2. For example, he KNOWS, by the look on one's face, if that person is angry, sad, happy, joking, teasing, etc.
But he still interrupts, disregarding or not noticing how annoyed people may be about being interrupted. He gets too close, and violates people's personal space. He is too touchy-feely-huggy with anyone and everyone, of either sex, whether a stranger or a familiar person. Etc.

Regarding Stacy's example re: Paige's homework questions, where Paige was asked to infer . . . I think that the IEP should address that specific vulnerability. For example, "Given the main character's feelings at the end of the story, what do you think s/he would do/how would s/he feel if s/he was facing that same situation again the next day?"

Vic's visual-spatial problems are immense, and we have not been able to get him to understand beginning, middle, end (or bottom or last). Up/down is still a problem. Likewise in-front-of/behind is a problem. Vic does not use his eyes like you and I
do--for example, you cannot direct him to "watch me and do it like I do it". He cannot "copy" a movement or a task. He does not track very well--that may actually be a more complicated problem, related to cortical visual impairments (he used to be cortically blind but he has improved greatly) as well as NLVD.

Copying from the board is difficult because the child must shift his gaze from one plane to another (visual-spatial). Slant boards to write upon will help. Or doing away with copying from the board. Make sure that is in the IEP, as well.

Vic, though not up-to-speed with math, has learned adding and subtracting, up to 3-digit numbers in the numerator/denominator, with borrowing and carrying.

So, if Vic can come along, with an I.Q. of 40 (!!!), decoding at a
3rd grade level, and doing math, as above, do not let Byron Rourke get you down with his dismal prognostications.

I have always said that Vic's LD, which is NLVD, has actually helped him. He was so interested in letters and in reading/being read to at an early age, that that had motivation value for him to learn to read and love books and learning. Vic's favorite song for years, till he was 9 or 10, was the alphabet song--that is how much he loved letters and spelling. (He is an excellent speller, all of it memorization, with SOME ability in phonics). So, don't grieve too much if your kiddo has NLVD--for Vic, it has worked in his favor, IMO.
Chris and Vic

medrecgal said...

Chris,

Yes, according to the literature, the underlying problem in NLD is thought to be a visual processing deficiency; visual perception, spatial ability, and the like are all impaired to some degree by NLD. In the case of reading, however, oftentimes NLDers are excellent spellers and readers (though not always). I would also have been considered "hyperlexic" since I learned to read at the age of 3.

Visual-spatial comments reminded me of the horrific time I had with learning to drive. Even though I managed it (and have been licensed for ~10 years), they tried very hard to tell me I'd never do it because of things like lacking a sense of direction, having a poor visual memory, and coordination issues. Sometimes trying novel ways of learning helps, since it was a lengthy process of being talked through the necessary motor sequences by a very patient instructor that allowed me to make this happen.

As for Byron Rourke, the groups I mentioned in my previous comment take his research with a large grain of salt. Probably because the cases he studied were so extreme, his views were skewed quite pessimistically. No doubt there can be many challenges from NLD, but there are strengths alongside them, too. The trick is to find the right ways to use those skills that are in fine working order,as well as figuring out which things aren't so easy. It took me a while to realize I was never going to be good at some things, no matter how hard I worked or how interested I might have been.

Spelling...funny memories of outrunning the school's system in 5th grade so the teacher had to make her own new lists, and the teacher from 6th who said, "If you want to know how to spell anything, just ask her...". At least there was something I was always consistently good at!

Helen Harrison said...

Ed is also a world-class speller-- in several languages.

His brain damage is worse in his right brain as evidenced by increased spasticity on his left side.

I've seen reports suggesting that people with right-sided brain damage are "happier" than people with left-sided damage.

chriskeller said...

Helen wrote . . . reports that say right-sided brain damage may result in "happier" people . . .

This finding puts me right on the brink . . . The inference is that people with cognitive disability/mental retardation are happy--that is, unaware of the world around them, unaware of how severe their disabilities are. Something like a happy drunk! I think that is a popular (mis)conception. I don't know how others' peoples' kids are, but Vic is "bright," even with an I.Q. of 40. He is "up" and enthusiastic and full of energy. He is lively and gregarious. Is that the same as "happy"? And is this kind of personality linked to NLVD?

I don't know all the answers. But for Vic, he is always "ready to go," ready to jump in and engage. He is not shy. He does not hold back. When he makes mistakes, he is undaunted. When he can't get something, he keeps trying. He is not embarrassed. He is guileless.

Is he happy? YES! And you can bet your sweet bippy that I am happy, too. He has saved me from depression many a time.

P.S. I second Helen's motion--that music is a "key"--it is for Vic. Like Ed, Vic has learned some Finnish from Vaartina Seleniko; he loves Irish and Scottish fiddling and pipes; he loves Bobby McFerrin's virtuosity; he loves his brother's music. He loves drumming--Supralingua is a fav. He is just discovering Scott Joplin's rags now . . . Oh, and he loves the sound effects guys on Prairie Home Companion--he has even named one of his stuffed animals after Fred Newman! If you take the happiness question and turn it around, music makes my boy happier than almost anything. My guy is happy immersed in music.

The Preemie Experiment said...

Ex wrote: " I think it would be a good thing in the discussion of the good and the bad about neonatal outcomes to someday have an outcome entity that we recognize as 1) ambulatory, 2) conversant, 3) able to read and write, 4) capable of meaningful interaction with loved ones but 5) challenged in daily living activities due to NVLD. Perhaps someday this will become a standardized outcome category."

Hi Phil,

Thanks for commenting.

I think even more could be added to the categories you mentioned. Mental health HAS to be in there.

I wish I had the magic words that could be used when talking to parents, in order to prepare them for a decision or, once a decision is made, help to prepare them for the future. I surely would not claim to have any answers here. But, I sure do have suggestions.

I will be making this topic the focus of an upcoming post. I hope you will return and add to the discussion. More than you may choose to believe, I appreciate your input.

Stacy

terri w/2 said...

Stacy;

The AHA! moment you are experiencing is one we had here when my daughter was 15 - I was taking a communications class and we were studying "non-verbal communication" of which 75% of our communication is composed of. That very same day, we were at the local bookstore, and a book called "Parenting Your Child with a Non-Verbal Learning Disorder" was in the new book section - curious to find that there was a "disorder" attached to non-verbal communication, I picked up the book. Needless to say, I was completely stunned as it described my daughter's behaviors EXACTLY. Early verbal skills, excellent memory, poor math and organization, hates puzzles, emotional lability - check, check, check down the symptom list. . .

I called our school, doctor the next day, and no one had heard of this disorder. I scheduled an eval with a neuropsych - she was diagnosed - clear case of NVLD or NLD.

And yes, schools we found, are pretty much clueless as to the severity of this disorder. .they are used to "left-brained" disorders - those involved in reading, etc. . areas where our children excel. .we were told too that our daughter could do the work if only she "tried harder". .they didn't get it. At all.

Another excellent website is NLDline. .great articles and support.

Rebecca said...

The comment about people with right sided brain damage being happier than others wasn't [correct me if I'm wrong Helen] a comment implying that people with brain damage are unaware and happy. Rather the emphasis should be on the RIGHT sided nature of the brain damage. A lot of the research has been done in people with strokes. People with left sided brain damage are more likely to be depressed than people with right sided brain damage. There's a lot more research out there about hemispheric modulation of mood, but I don't remember it all.

terri w/2 said...

People with right-sided brain damage maybe have less depression because typically, they are largely unaware of their limitations. This is also often seen in people with NLD (there are exceptions as we've seen on this list), however, not realizing that there are limitations in their functioning (being able to accurately read others' intent) leads to risk taking - my daughter is one of those. She is extremely literal . .and extremely gullible. We constantly walk a fine line between encouraging her to do things and be independent, and at the same time having to *try* and be vigilent in detouring possible dangerous situations. Being on-line has been hell for us - she's met some unsavory characters, and does not realize that she's jeopardizing her safety. She is promiscuous and at 21, we really have no control over her at this point legally. We are at the point that we hope that our talking will somehow sink in, but if not, pray that she will not fall victim to others which unfortunately with NLD is an enormous concern.

Helen Harrison said...

To Rebecca and Terri:

Your qualifications of the "happy" statement are all correct, as far as I know. That was why I put the the word "happier" in quotations.

My knowledge of all this is limited to some neurology lectures in which left-sided stroke/tumor victims were described as much more depressed about their circumstances than those with right-sided damage. This doesn't necessarily imply lack of awareness so much as a different, and more cheerful, "take" on what has happened to them.

I have recently heard a neurologist use the word "manic" to describe some right-sided brain damaged people. The risk-taking problem is, apparently, a real one.

buddhist mama said...

Wow, a fascinating exchange thus far. My twins are only 3 and half and so I think it is far too early to see much of what is being discussed. However, I see glimmers-----both of my kids love to read, be read to, they are above average verbally, and yet my son has some coordination problems, does not seem able to hold a pencil very well yet, and LOVES music.

Oddly, I thought music was a right brain skill? And that is was also aligned with math skills? In other words, I've often heard that many structures in classical music are highly mathematical.

The other thing I noticed was that the abstract of the study that compared NLD with LD and a control group noted that "No significant association was found between nonverbal LD (NVLD) and any type of behavior problem."

And yet several of you have noted that NLD is associated with an inability to read social cues, risk taking, and what clearly seem to be some behavioral issues. Can anyone comment or clarify?

chriskeller said...

Buddhist mama wrote:
I noticed . . . that the abstract of the study that compared NLD with LD and a control group noted that "No significant association was found between nonverbal LD (NVLD) and any type of behavior problem."

And yet several of you have noted that NLD is associated with an inability to read social cues, risk taking, and what clearly seem to be some behavioral issues. Can anyone comment or clarify?

Kim, I think that we may now have to define our terms--what are "behaviors"?

Missing social cues may lead to some behaviors . . . described above. But missied social cues, inability to read facial expression, like face-blindness or mind-blindness in AS, is what NLVD is about. These disabilties lead to behaviors--they are not, in themselves, behaviors.

It seems like hair-splitting or a technical distinction--because the problem remains the same. The cascade happens so quickly, that we may not be able to see how to intervene between the disability and behavior. The disability runs right into the behavior. That is what OTs and PTs and psychologists are there for, I think, to help us distinguish and then break in between, to stop or damp the rapid cascade between disability and behavior.

Joan's observations about "Dr. Jeckyl/Mr. Hyde" behaviors are a testimonial to our kids' adaptability and resilience, really.
The kids hold it together at school, able to delay their stress-response to their enormous compensatory tasks at school. They then let go at home. They know where it is safe--home. It is a coping strategy, to wait to let loose.

School people who don't realize this either don't have their own kids (because all kids do this to some degree) or they are simply inexperienced or haven't learned from their experiences (read, they haven't learned from listening, REALLY LISTENING, to parents over time). IMO.

Chris and Vic

chriskeller said...

I am re-reading Rourke, now, looking for an answer to Buddhist Mama's question on musical ability . . . Nothing in Rourke (Non-Verbal Learning Disabilities: The Syndrome and the Model, 1989) on musical abilities. I will go back to my other Rourke book, and if I find anything there, I will post again.

I also looked for behaviors:

Rourke mentions that NLD/NLVD kids may have problems outside their family with "an internalized form of psychopathology that is characterized by anxiety, social withdrawal, depression and inappropriate interpersonal behavior".

Over time, kids decline in age-appropriate performance. They decline in hyperactivity, if they showed this trait in earlier years. (In fact, they tend towards less and less participation, and more and more sidelines observation, and can become couch potatoes.)

Novel learning is a problem. Kids do best at memorized or "over-learned" material. Attention to visual detail was severely impaired. Diminished or absent exploratory behavior. Uninterested in novel surroundings. Diminished or absent curiosity (Vic never reached out for toys or balloons, or colorful objects, as most babies/toddlers do.) Good memory for rote material; poor memory for complex material. Exploration of environment by VERBAL rather than psychomotor means.

Cursive script much better than printing. (Dyspraxia)

Socialization may top off at the 3-or 4-yr-old level. Adaptive behaviors top off at the 5 1/2-yr-old level. thus, inability to meet age-appropriate developmental demands. Later, is said to have "immature behavior".

May be consistently friendly and cooperative. May be confused/disoriented at the same time. Requires guidance and encouragement. Talkative (benefits from talking oneself through all tasks and directions given by others). Rambles = "cocktail converstaion". Distractable. (Drifts off.) Impulsive (leading to early, incorrect diagnosis of ADD/ADHD).
Easily Frustrated when unable to complete a task appropriately.
"Careless mistakes".

Very slow eye-hand coordination (visual-spatial deficit)

Failure to learn from/benefit from experience. Failure to benefit from informational feedback. Decreased ability to make applications, or "transfer-of-training".

Poor visual imagery (ability to see something in the mind's eye.)

In reading, inability to use contextual cues to make inferences.

When scanning 4 visual alternatives, the items in the left visual field (left of midline?) will not be "noticed" or factored in equally. (Poor short-term memory for visual sequences, as well.)

Does not readily start to write/read at the far-left of a page.

Adaptive ability deficits (evident at middle-school age level):
tasks requiring perception, memory, analysis/synthesis, and integration of visual-spatial info, problem-solving, concept-formation.

Awkward gait. Poor coordination.

Sing-song vocal quality.

Stacy, please stop me if you think this is a poor use of your blog.
I can easily write these things privately to those interested--contact me at chriskeller@centurytel.net.

Chris and Vic

Joan McKenty said...

Buddhist Mama asked:

"The other thing I noticed was that the abstract
of the study that compared NLD with LD and a control
group noted that "No significant association was found
between nonverbal LD (NVLD) and any type of behavior
problem."

And yet several of you have noted that NLD is
associated with an inability to read social cues, risk
taking, and what clearly seem to be some behavioral
issues. Can anyone comment or clarify?"

Purely speculation here but I'm wondering if it has to
do with holding it together and "pretending to be
normal" in environments outside the home including
school and then "letting it all out" at home.

I'm quoting "pretending to be normal" from the title
of a book by a woman with Asperger's Syndrome raising
a child with the same diagnosis: Pretending to Be
Normal: Living With Asperger's Syndrome
by Liane Holliday Willey. Asperger's syndrome is a
diagnosis similar to or inclusive of NVLD.

The children learn to follow the rules of expected
behavior but there is so much that occurs during the
course of a day that they really don't understand - so
much about interaction that they are totally lost and
confused about - and all of that confusion is held
inside as stress.

I imagine for a child it may be like being in a place
where the only way to get through the day is to walk
down a hall and step on only the black lines, and if
you walk on a green line you made a terrible error
that you don't really understand. The important thing
is that you made it through the day stepping on all of
the black lines and then when you get home you fall
apart from the stress of the endeavor.

What I understand about NVLD kids - at least the ones
who are "appearing" normal - is that they simply do
not understand SO much that we take for granted in
normal interaction - while at the same time they may
be bright and the people in their environment are
assuming that they DO get it.

The "normal at school/falling apart at home" is a very
familiar complaint or phenomenon described by parents
of children born prematurely - especially in the first
years of school, kindergarten, first grade, etc.,
where their children's difficulties become more
apparent - at least to the parents who struggle with,
and are bewildered by, the behaviors at home.

While a researcher may note no behavioral problems in
a specific context, such as school, the parent
experiences completely different behavior at home -
almost as if school and parent are describing two
completely different children.

I think this also leads to the lack of validation of
parent's experiences with their NVLD - or NYD NVLD
children by school personnel. Parents struggle with
the behaviors. School personnel smile patronizingly at
the mom - noting that the child is "fine at school".

BTW, "NYD" is my own term for the "Not Yet Diagnosed"
children - who start kindergarten and struggle through
school for years, or maybe life, without the
appropriate diagnoses or support.

Joan McKenty said...

To Chris,

I appreciated your list of characteristics of NVLD. Very interesting.

The way these diagnoses always bring up the motor issues - dysgraphia, clumsiness, awkwardness, (sounds like "developmental coordination disorder") suggests that the NVLD issues originate in damage to a particular area of the brain and are part of a bigger picture.

Also, regarding musical ability, different parts of the brain are used in playing music by ear versus reading music or even playing music through memorization.

There must be (or may be) studies on this somewhere.

Anonymous said...

TOTALLY OFF TOPIC..sorry.
I just watched Nicole Conn's Little Man the Movie. Wondering if we could have some discussion about it in another post. Stacy, would love your and others thoughts on the story of Nicholas, his doctors, his treatment and outcome.

medrecgal said...

Joan,

The literature on NLD suggests that the underlying problem may involve damage to the white matter tracts in the right hemisphere. Generally if there is damage to the brain not extreme enough to cause overall problems (like CP or severe cognitive impairment), the left hemisphere is more likely to be spared than the right one, as language is a primary function the brain works hard to preserve at the expense of other functions.

White matter is more plentiful in the right hemisphere, so any sort of insult there is more likely to manifest through motor issues; also the visual centers are primarily located in the right hemisphere, so visual/motor abilities and visual perception will be impacted by such insult as well. There is plenty of research out there, but I'd have to dig through my internet sources and literature to find it.

medrecgal said...

Joan,

As for "pretending to be normal", that could very well explain much of my own experience with NLD, and the completely disparate reactions I've gotten over the years whenever I've tried to explain the peculiarities of my experiences with academia, social situations, and such. Sometimes high intelligence can be a great mask for underlying cognitive problems, such that you "fly under the radar" until you fall flat on your butt one day and they all wonder what happened. I always knew I wasn't "normal", but I was in college before they truly realized the scope of the cognitive problems that would derail my career plans and cause me to re-evaluate my whole sense of existence. Guess I was good at pretending...since some people were completely flabbergasted, while for others it made perfect sense.

Susie Korbel said...

Stacy, please update more on this if you find out more! As I mentioned on the Yahoo group, I was only recently diagnosed with this and I'm still struggling with how to deal with it and the ways it affects my life.

buddhist mama said...

Thank you SO much Chris for that great list of behaviors and issues, and Joan for that insightful comment on falling apart at home/holding it together at school.

I am starting to see that very early, as my 26 week twins have started preschool in the last year. They have always been 'fine' and had 'no problems' according to their teachers at the mainstream classes they have been in, but when they get home they have been falling apart quite regularly since they started school about a year ago, at 2 1/2.

Their first school was a waldorf school in india where the emphasis was on socialization, long periods of play, art. The long periods of play, calming atmosphere, and simplicity of a waldorf environment were GREAT for my kids and maybe would be for other kids with sensory issues as there was not much of a sensory overload in this waldorf classroom---which was round, had only unpainted wooden toys in it, and some pieces of cloth, a few dolls. Just thought I'd mention this as we have been talking about sensory issues on other posts.

However, they are now in a much more stimulating and challenging American preschool environment---heavy on arts/crafts, music, and yet still with a lot of unstructured free play time. This school demands more of them and they correspondingly fall apart even more so at home than they did 5 months ago. So it is interesting to watch, while reading these posts about NVLD---namely that as the challenges of schooling and complex reasoning increase, so does the frustration and thus the 'acting out' of the child with NVLD, all while the diagnosis is still under the radar.

One thing I noticed with my daughter recently as we started picking out letters of words---she hated to be told to read left to right and so I just left it at that. Wonder if this is a very early signal of NVLD that might help other parents. It was such a strange inclination, but then Chris' list made sense of it---both the bit about inability to start reading at far left and also the bit about how visual field left of midline is somehow compromised. These two facts seem linked.

terri w/2 said...

One of the things that I've noticed with my daughter also, is that while she is able to read well, inference is a challenge. In addition, when it came to math - adding up rows of number was/is extremely difficult - she doesn't get the lining up of numbers to correctly add them. This apparently is pretty typical of kids with NLD.

Organization in general is a huge issue at our house. She cannot get the concept of organizing her things - preparing in advance, time management - these things just escape her. She (at 21) is like a tornado going through the house. My daughter has also received a diagnosis of Aspergers, although if I were to choose between the AS and NLD dx, the NLD is much more impactful, as it permeates such a large portion of her life skills. I do not foresee her being able to live independently. It would be nice if there were an "assisted living" arrangement for adult kids with her abilities/disabilities - she is able to drive, attend school (part-time) or work (part-time), but being able to handle life and all that it entails full-time, even with her high intelligence, is just not going to happen. She still has frequent melt-downs and is easily overwhelmed.

And she is one of those who definitely slips through the cracks due to her intelligence. She talks a good talk - literally! She sounds wonderful one on one. We have been warned by neuropsych that people will have the tendency to overestimate her abilities due to her intelligence which will cause her stress and lead to increased mental health issues. We've seen it with school personnel, who are clueless, we've seen it with social services (she did not qualify until adulthood).

As I've said previously - it's a fine line between encouraging her and holding her back so as not to overwhelm her. She is of the mindset that she will be getting married, having children (part of that pesky right-brained unawares.) One of the books I had read on NLD initially said that many "street people" have NLD. They are easily victimized due to their literalness, lack of street smarts, gullibility. Not comforting, I know, but living with her, I certainly can see how this could happen without appropriate supports and a family that understands this mindset (sort of).

chriskeller said...

I, too, am following up on this topic.

In the last few days, I read a paper from 1995 in the Journal of Learning Disabilities, called Developmental right-hemisphere syndrome: Clinical spectrum of the nonverbal learning disability by Gross-Tsur, Varda-Shalev, et al.

This paper is more recent, but the sample size is small (20 children). Difficulties described were "emotional difficulties and disturbances in interpersonal skills; poor visuospatial ability; academic failure, especially in arithmetic; and (soft) left-sided neurological findings".

ADHD was "a part of the clinical picture". The most interesting part of this paper (to me) was that you might be able to distinguish between a diagnosis of "straight" ADHD and NLVD (or DRHS) by the clinical finding that in NLVD/DRHS kids, "Routine activities of daily living and preparation tasks took an unreasonably long time to be completed; the children required extra time in tests, were unable to finish their school assignments, and spent hours doing homework." (slowness in both cognitive and motor tasks or hypokinesia--the study investigators called this a "striking finding"). "Slowness is NOT one of the criteria for the diagnosis of (straight) ADHD" although children who lose focus may take longer to complete a task. The hypokinesia described in NLVD/DRHS kids is a more basic or extreme slowness . . . (Sixteen of these 20kids were on ADHD meds, by the by.)

This paper is good because it gives a lot of references, besides Rourke, and it is a little more recent--though 12 1/2 years cannot really be considered recent.

Other characteristics: verbal I.Q. is much greater than performance I.Q. (by 20-30 points, but this may be an old standard); the kids may be diagnosed with more than one learning disability; when asked to copy, they have an atypical copying strategy; immediate recall was impaired; scores on the complex figure test were all below the 25th %-ile; gestalt scores also very low. Arithmetic, comprehension, geometrical design, spatial memory, and Koh's blocks scores were low. All children were "socially inept, withdrawn isolated," shy. "They might have one good friend, but avoided groups . . .". Half had difficulty maintaining eye contact. About 40% reported "other family members (fathers, uncles) with similar behavioral characteristics."

The other resource that I have been looking at is a workbook by Michelle Garcia Winner called Inside Out: What Makes a Person With Social Cognitive Deficits Tick? In this workbook, Winner lumps Aspergers, High-functioning Autism, NLVD and PDD-NOS together, calling them "social cognitive deficits". She proposes a treatment plan that involves intensive personal problem-solving and communicative success:

*initiating novel activities
*listening actively
*abstracting and inferencing (sic)
*understanding perspective
*Gestalt--the big picture and
*humor and human-relatedness
(Otherwise known as the I LAUGH model.)(2000)

Chris and Vic

The Preemie Experiment said...

Thanks for all of the great info on NLD. As we get further along down our diagnosis road I will update the blog. I have learned that it will not be easy to get help at school until she is older. Although this is frustrating to me, what is even more frustrating and heartbreaking is that Paige will struggle until she can get help and understanding.

And, on an honest note, as a parent, I find it very hard to deal with some of the issues. Just because they may now have a name, doesn't mean that it is much easier. I am still learning how to walk the fine line between letting go of certain expectations and challenging her.

To anonymous...As far as discussing the Little Man movie, it will have to wait for personal reasons.

NICU101 said...

My older daughter was late preterm, and this sounds like her as well. She's extremely literal, has horrific handwriting, and has less than great coordination and fine motor skills. Definitely something I'll keep in mind as we enter the school years.

some mommy type lady said...

The study of extremely low birthweight children to fullterm chidren from vancouver, canada was very interesting. Thats the kind of stats I've been asking about for years....oddly enough that was the nicu that my children lived in, yet they refused us that info. I am sure both of my preemie twins have nonverbal learning disorder, thanks for the eye opener

Laura Gilmour said...

I was a full term baby but have a diagnosis of NlD with autistic tendencies and/or Aspergers. I am not sure if it is due to genetics (traits in family members) or the fact that my Mom's blood pressure bottomed briefly when I was born. I know from my psychology courses that often genetic and environmental factors combine to contribute to NLD/Aspergers. When I was six years old my performace IQ was in the 70s and my verbal IQ was in the 110s. Now I have improved in some areas but have subcategories ranging from 82 to 140. Due to high intelligence and being able to talk my way through things (I have to work extra hard in subjects with a math component) I perform average-above average academically. I do not have musical talents but I do have a talent for creative writing and poetry. Until a few years ago I couldn't recognize most facial expressions, I have great difficulty identifying people by faces. I have difficulty with rythmic movements and navigation in 3D space (I bang into people a lot). Copying off the board is diffiult (especially diagrams) and I never really mastered cursive writing. I can learn most motor tasks with repeated practice (taught myself to inline skate but not that great at it). Swimming and jumping on a trampoline seem to work well for me. They were what helped me to run in a rythmic pattern and improved my awareness in space. However, Most of my struggles have been social and emotional. Conversation skills took years of work. I spoke at six months of age but much of my conversations were monologues about topics I was currently obsessed with. I have had some friendships, but have never been in a romantic relationship. I have no idea how to behave around guys and sensory issues make physical contact with people outside my immediate family difficult. Sometimes (in non academic situations) it seems the world wizzes by me and I'm in my own separate universe. For instance I'm riding in the car with my family and I forget which one of our cars we're in or most of the things my university peers talk about I have no interest in. As far as emotional/behavioral After finally getitng rid of most of the meltdowns I developed panic attacks Terri w/2 I emphasize with what you say about your daughter being able to handle things "part time." Due to recent issues with anxiety I have had to reduce my courseload at school. Life (especially social interaction and math-based courses) takes a lot of mental energy for me. Right now I am working on a degree in psychology and hope to pursue a career in research. My family and people who have worked with me have always believed I am capable of achieving independence (to live and be finacially independent) but that it may be in my 30s instead of my 20s. I am cautiousally optimistic about my future.

Anonymous said...

I just found this page (Dec 7/14). My daughter is 22 yrs. old now and just recently diagnosed with NVLD. I was reading from the beginning which started in 2007 and identified with much of what "medrecgal" said. She/he seems to share similarities to my daughter's struggles and I NEED to get in touch with this person. I'm not very good at manipulating the internet so if anyone of you can get a message to "medrecgal" for me I would so appreciate it. My name is Tracy and please have "medrecgal" email me (not post on this site as I get confused with the technology) - my email is tbush@cogeco.ca THANKS SO MUCH