What does your NVLD kid look like?

[jujsky]

DS recently went through educational/IQ testing at our local school and went to Boston Children's Hospital for neuropsych testing. We have all the school testing back, and we're going in Friday to hear the results of his neuropsych evaluation. He sort of fits ADHD, and I think will be diagnosed with this, although he has the ability to focus on things he likes which is more of an Asperger's trait. He sort of fits Aspergers (but I don't think he hits enough of the diagnostic manual's criteria to be officially diagnosed) and I stumbled across a thread here on NVLD and he seems to fit that too. I know all NVLD kids look different, so I'm wondering what your kids are like, and if they look like mine.

 

DS learned his letters early, but it took awhile before reading took off. Sometime in 2nd grade he took off with it, and now at age 8 and as 3rd grader he's reading the 4th Harry Potter book and the Percy Jackson series. He loves to read and does so all the time. He can spit back what he reads, and the academic testing (Woodcock Johnson) shows that he's average-high average (bordering superior) on all of his language arts skills. He scored low-average to average in math, which shocked me. I expected him to be well below average. I'm not sure if my expectations are too high, or if their idea of "average" is too generous. He is a lousy speller and horrible in math. While they said his reading comprehension is high-average, I have to wonder how in-depth the questions were. I've noticed that he can spit back anything he reads, but if you ask him a question about a character's motivation ("Why do you think the character did that?") unless it's spelled out in the book, he doesn't know. In fact he will answer, "I don't know. That wasn't in the book."

 

In math, he seems to do a bit better with word problems than he does with regular computation. He does not have any of his math facts memorized and still counts on his fingers for addition and subtraction. For multiplication, he adds 3+3+3+3 instead of memorizing 3X4. Math and time have been awful, although after 3 years it seems time is starting to click for him a little bit. He still can't tell the difference between certain coins. He has a difficult time lining up problems, and very little sense of place-value. He mixes up math symbols (addition, subtraction, etc) and reverses and transposes numbers frequently. His biggest issue is with the teen numbers. He will read 12 as 21 and INSIST it is 21. 13 is 31, etc.

 

His handwriting is barely legible. He doesn't capitalize the first word in his sentences, even though before he writes I have him spit back the rule to me. He knows it, but it gets lost somewhere when it comes to actually doing it. He reverses several letters still, and writes with a mixture of capital and lower case letters. I think this is partly a coping mechanism he's developed. You can't mix up B and D as easily as b and d. Even though we've been over paragraphs a billion times this year, he can't get the indentation right. He will start at the margin, and then indent all the following lines. Even if I draw an arrow on the first line to show him where to start, it doesn't help. He'll start at the arrow, but still indent subsequent lines past the arrow. I don't know if you can picture what I'm saying. He pretty much does a backwards paragraph.

 

Socially, he's awkward. In our small co-op, he always seems to be the kid all the other kids are telling on. Sometimes he gets carried away in play and will get too rough. He has a hard time dialing it back when he gets like that, and he's not great at picking up on social cues. Beyond that, I can't put a finger on what he does that makes him awkward, but he doesn't quite fit. He went to Lego camp this summer and I volunteered a couple days. I saw it there very clearly -- much more so than in co-op where his friends like him even though they have reason to tell on him constantly. He ended up hanging around with the 2 other kids who were a little awkward. The other more socially-aware kids would tease him, but unless it was very evident (name-calling and such) it went over his head entirely. The two kids he hung out with looked nothing alike except they both had short, brown hair and glasses. One was his height and stocky, the other was much shorter than him and skinny-skinny. He kept mixing them up. When I asked him about it, he told me they looked exactly alike to him. I had to point out the differences so he could learn to identify them. There were also identical twins in his group, but they dressed differently. One dressed sort of punk, one dressed sort of preppy. He didn't think they were twins. To him, they looked nothing alike. I haven't read anything about NVLD and lack of facial recognition, but is that common?

 

He can't ride a bike and has always had trouble catching a ball. We tried him in several team sports, but none of them worked out for him. He seemed lost and confused. He is in gymnastics and likes that. He'll never make the team and has no desire to do so, but he enjoys the class he takes.

 

I can't figure out what Performance IQ is on his IQ test. His Verbal IQ is 124, Perceptual Reasoning IQ is 100, Working Memory IQ is 94, and Processing Speed IQ is 91. I know that a 15 point spread or more between Verbal and Performance can indicate NVLD. There is more than a 15 point spread between Verbal and any of the other categories. Is Performance IQ the average of Working Memory, Processing Speed, and Perceptual Reasoning? He took the WISC-IV. On the BRIEF questionnaire, he had problems with Inhibit, Shift, Initiate, Working Memory, Plan/Organize, and Organization of Material. Basically, the BRIEF indicated that he had problems on everything except Emotional Control.

 

He has also always had sensory issues and weak trunk muscles. I don't know if that's an NVLD thing, though I do know it can be an Aspie thing.

 

If I could hear about what real NVLD kids look like instead of just the little case-study blurbs, it would help me sort this out in my head a little bit. And yes, I know I haven't gotten any results yet from the neuropsych and I'm jumping the gun in self-diagnosing him. I want to be able to go into that meeting with some knowledge about anything and everything his issues could possibly be so I can spend that time asking appropriate questions. What I've been reading (Roarke, I think, authored many of the papers online I've found) sounds depressing. It sounds like these kids plateau and then don't have the ability to learn any more. I want him to be able to go to college someday if that's what he wants to do. I don't want him to be limited, and based on what I've read, he will be. Do you think that's true of your own children, or is this research outdated?

 

Thank you for sharing with me!

[Walking-Iris]

your ds sounds just like my 9 year old ds. The only main differences are my ds has great handwriting and is a great speller and retains grammar rules very well---I attribute that success to what I've used with him for homeschooling those areas(in my siggy), and OT and speech for pragmatics.

 

Math is not his strong subject but he's doing well with it if I continue to spiral review. Sometimes I feel like we'll never get anywhere we take such baby steps in math but then he'll surprise me and zoom way ahead and then we'll stay there for a while---endlessly reviewing. Math definitely takes a lot of patience on my part.

 

Your ds is reading at a higher level than my ds. This is where I worry. He*can* read at the level that he could easily read a Harry Potter to himself, but he just has no desire to do it. Actually resists any kind of reading assignment on my part. He also struggles in the comprehension part. I can re-read aloud the same paragraph numerous times and he will still struggle to answer a comprehension type question about it. He also struggles knowing where to look to find an answer even if he's read it himself out loud a couple times. Almost like he doesn't have a good map in his mind as to where he saw/read that information. Same here with the paragraphs. He loves to write and has great grammar, but formatting a paragraph or friendly letter is torture. Again it seems as though he can't visualize or map what that should look like in his brain. I worry that his weakness in comprehension is what causes his anxiety about reading. So he avoids reading books except for some well worn favorites.

 

Socially and in the aspects of active sports/games/bike riding---my ds struggles with that as well. My ds has never had the testing that your ds has had, but he did get his testing and evaluations from a dev pede and diagnosed with PDD-NOS/OCD-anxiety and sensory issues. He also has weak tone in his trunk and hands and struggles with a lot of fine motor tasks (dressing, utensils, building toys like legos etc)

 

Have you looked into the PDD diagnosis as well as sensory. The book Out Of Sync Child is what triggered my feeling that there may be *something*--also I don't for one minute think that my ds is going to hit a plateau and then not be able to learn more. Just don't see that being an issue. I don't have experience obviously with NVLD or the kinds of tests you're mentioning. I just thought I would share that your description sounds a lot like my ds. People incorrectly assume my ds is Aspergers as well---I always correct them because the two (Asperger's and PDD) can be so drastically different.

Edited February 4, 2012 by Walking-Iris

[jujsky]

Walking Iris, I have The Out-of-Sync Child. When DS was younger he was diagnosed with sensory processing disorder and spent 2 years in OT. Very good, helpful book that might be worth another read-through. I've been reading a lot about the differences in PDD-NOS and Aspergers. He has some traits of each, but not enough traits in one or the other to be diagnosed -- at least I don't think so. The doctors might feel differently. He sounds slightly more Aspie than PDD-NOS, based on what I've read. He is affectionate. That's the thing that's confusing me about many of these possible things -- characteristics of anything that is a PDD usually lists lack of affection as one of the defining characteristics. He didn't like to cuddle or anything as a baby (we adopted him at 6 months from a Russian orphanage, so some of the early stuff might have been due to that), but once he was a toddler he became more and more cuddly. He'll hold my hand if we're out places, sit in my lap, and give me huge hugs. He likes to be pressed up right next to me if we're watching TV or reading. He tells me all the time that he loves me.

 

Nothing I've read about any of these things fit 100% and there is so much overlap in all these different things (not to mention comorbidity as well) that I don't know how the doctors sort it all out. I'm curious and nervous to see what they say Friday. Thank you so much for telling me about your son. They do sound similar in a lot of ways.

[Walking-Iris]

Walking Iris, I have The Out-of-Sync Child. When DS was younger he was diagnosed with sensory processing disorder and spent 2 years in OT. Very good, helpful book that might be worth another read-through. I've been reading a lot about the differences in PDD-NOS and Aspergers. He has some traits of each, but not enough traits in one or the other to be diagnosed -- at least I don't think so. The doctors might feel differently. He sounds slightly more Aspie than PDD-NOS, based on what I've read. He is affectionate. That's the thing that's confusing me about many of these possible things -- characteristics of anything that is a PDD usually lists lack of affection as one of the defining characteristics. He didn't like to cuddle or anything as a baby (we adopted him at 6 months from a Russian orphanage, so some of the early stuff might have been due to that), but once he was a toddler he became more and more cuddly. He'll hold my hand if we're out places, sit in my lap, and give me huge hugs. He likes to be pressed up right next to me if we're watching TV or reading. He tells me all the time that he loves me.

 

Nothing I've read about any of these things fit 100% and there is so much overlap in all these different things (not to mention comorbidity as well) that I don't know how the doctors sort it all out. I'm curious and nervous to see what they say Friday. Thank you so much for telling me about your son. They do sound similar in a lot of ways.

 

My ds has always been a sweet little boy. Very kind and loving, doesn't (and never did) shy away from snuggles or hugs and has a better grasp of feelings and empathy than a lot of the nt kids I know. He just doesn't have a rude or mean bone in his body. So I don't hold the criteria about feelings and affection in any kind of high regard.

 

I also thought people were nuts to suggest my ds might be "on the spectrum" or "mildly autistic' etc. But once I really stopped and thought about it---it was clear as day to me. He regressed and it was subtle at first. There's so much involved and complicated about my ds. People have a certain idea about what a kid on the spectrum acts like that they are confused when it's not what they thought. I've met so many kiddos on the spectrum over the years and what they all have in common is only balanced out by all that sets them apart.

 

I'm not saying your ds is HFA or PDD or aspie---just that I felt the same way. I would read so much and it seemed like I could find my ds in almost any diagnosis I could find. Think of it this way---regardless of what the drs say, it's going to end up being the same thing in the end---ot, speech, possible physical therapy, supplements, talks about possible meds (my ds recently started zoloft and is doing very well on it), IEPs or if you homeschool then you'll tailor your curriculum to him, sensory diets, maybe tutors, vision therapy etc etc etc. That's what really matters in the end, getting him into those services that are going to help. A diagnosis (whatever it ends up being) is sort of your ticket into those services and just a small slice to help you understand your child better.

Edited February 5, 2012 by Walking-Iris

[Mandamom]

I wish there were more resources for NVLD. I've been doing a lot of reading and researching trying to find some answers and descriptions and there seems to be some contradictions and others trying to lump all NVLD into ASD (which is may or may not be).

 

I work with several students who have the NVLD profile (based upon WISC testing) and their profile is similar to what you describe in your son. Several have other issues in addition -- dyslexia, language processing, ADHD. Other students I'm currently working with, I'm beginning to wonder if they might be NVLD but I don't have testing to back up my gut instinct.

 

All of the students have the

 

anxiety

math difficulties (computation and/or organization)

social difficulties -- lack of mature conversation -- no substance; struggles to pick up non-verbal cues and facial expressions

difficulty with humor

very verbal

 

Some of the students had very good comprehension while others don't.

One boy student -- most people would never have picked him for NVLD because he's a leader, gregarious, confident, etc. but given testing it shows he's in that category. He's very successful now that he's in high school and I can't imagine that will change anytime soon.

Another student (girl) -- was almost the complete opposite of the "leader" in personality but her profile put her in that category, too.

 

BTW, the students that I'm thinking about as I'm posting this -- only 1 or 2 of them would I consider to be close to Asperger's or autism (ASD).

 

I think, as in many of these descriptive diagnoses, that for some it depends on what other issues the child has (ADHD, language disorders, etc.) that can really change the way NVLD looks like.

 

I'm glad you posted this because I'm trying to find out all I can so that I can continue to be successful in working with these students.

Edited February 5, 2012 by Mandamom
to add one more thought

[jujsky]

A diagnosis (whatever it ends up being) is sort of your ticket into those services and just a small slice to help you understand your child better.

 

I totally agree with you. DH and I have talked about this a lot. MIL is all concerned that DS will have a "label" and how awful that is. We don't care what the doctors call him -- so long as whatever it is gets him help. I'm actually sort of hoping they label him as being mildly on the spectrum so insurance will pay for OT. We had problems in the past with insurance companies covering his OT because they didn't view SPD as a real diagnosis. We had to say he was "developmentally delayed" to get him services. Our insurance won't bat an eye at him receiving OT if he's on the spectrum -- we've checked. Plus if they "just" find NVLD and/or ADHD (I do feel he has ADHD) insurance won't pay for the neuropsych evaluation because his issues will only be "educational" according to them.

[jujsky]

 

anxiety

math difficulties (computation and/or organization)

social difficulties -- lack of mature conversation -- no substance; struggles to pick up non-verbal cues and facial expressions

difficulty with humor

very verbal

 

 

 

 

See, this is also the part that stumps me with both NVLD and anything on the autism spectrum. He has a great sense of humor. He does little play on words, and he started that at an early age. He does tend to take things too literally sometimes, but lots of other times he gets it. He's always laughing and joking around. His sense of humor and outlook on life (definitely a glass-is-half-full kid) are two of his strongest attributes.

 

At first I didn't feel he had any anxiety. It's only been within the last couple of days that I've been rethinking that. My DD is a very high-strung little girl, as am I. I think DS is more quiet about it and expresses it differently. I see what I would call frustration in him when it comes to school and other things like cleaning or organizing. Maybe frustration and anxiety are the same thing.

 

The rest of it is him to a T. Some of the descriptions I was reading about NVLD kids and math were completely him.

[rafiki]

.

[Laurie4b]

I advise people not to read Roarke. A psych friend who knows him thinks he is a major jerk and I think that comes across in unnecessary negativity in what he writes. Read sites by people with NVLD and parents, etc.

 

BTW, ADHD kids can concentrate on things they are interested in; they cannot concentrate on stuff that is low-interest.

 

Performance IQ is a term from the WISC-III and older WISC's. I think the processing speed tests were part of that and there were some additional subtests not now given and some new ones now that weren't given back then! Now it is perceptual reasoning.

Edited February 5, 2012 by Laurie4b

[Mandamom]

See, this is also the part that stumps me with both NVLD and anything on the autism spectrum. He has a great sense of humor. He does little play on words, and he started that at an early age. He does tend to take things too literally sometimes, but lots of other times he gets it. He's always laughing and joking around. His sense of humor and outlook on life (definitely a glass-is-half-full kid) are two of his strongest attributes.

 

At first I didn't feel he had any anxiety. It's only been within the last couple of days that I've been rethinking that. My DD is a very high-strung little girl, as am I. I think DS is more quiet about it and expresses it differently. I see what I would call frustration in him when it comes to school and other things like cleaning or organizing. Maybe frustration and anxiety are the same thing.

 

The rest of it is him to a T. Some of the descriptions I was reading about NVLD kids and math were completely him.

 

The "leader" student I referenced in my earlier post seems to be more like your son as this student is very outgoing, jokes regularly positive and confident. He will be very successful in anything that he does even with his moderate dyslexia. But he also has some of the NVLD attributes, also.

 

I'm really looking for a lot more information to help me figure some of these same things out. There really isn't a lot out there.

[jujsky]

I advise people not to read Roarke. A psych friend who knows him thinks he is a major jerk and I think that comes across in unnecessary negativity in what he writes. Read sites by people with NVLD and parents, etc.

 

BTW, ADHD kids can concentrate on things they are interested in; they cannot concentrate on stuff that is low-interest.

 

Performance IQ is a term from the WISC-III and older WISC's. I think the processing speed tests were part of that and there were some additional subtests not now given and some new ones now that weren't given back then! Now it is perceptual reasoning.

 

Okay, then there is a 24 point difference in Verbal and Perceptual Reasoning. That's quite a bit! Thanks for the information on Roarke. What I've read does sound very negative and hopeless. I'm hoping for some more positive stories, and learn how to capitalize on his strengths. Do you know of any good sites by parents?