NLD (non verbal learning disorder)

[keepthefaith]

Edited to add:  DD is left-handed - does this have any relation to right-brain issues for NVLD?

In our private testing, DD is described as NVLD.  But NVLD is not 1 of the 13 categories - can you get NLV under OHI?  At this stage,we don't care what label they give her but we want to help her privately and don't know where to begin.  Also, she didn't learn to tie her shoelaces until age 8.5 - it was a long 3 years trying to get her to tie them by herself.  She still has problems.

The doctor who did the testing recommended some sites for NVLD.  I read this article and DD is 90% accurate to this article:

www.waisman.wisc.edu/~rowley/sb-kids/publications/Misunderstood%20Child%20-NLD.pdf

Table 1


Social Competencies


1. Extreme difficulty in coping with novel and complex
  situations and an over-reliance on rote, commonplace
 behaviors are observed
2. Significant deficiencies in social judgment and social interactions.


Lack of ability to comprehend nonverbal communication

Academic
- we identify 100% with this:

Problems in math, reading
 comprehension, handwriting
- AGREE
Problems with organization, problem-solving, higher
 reasoning
- AGREE
Strengths include strong verbal
 and auditory attention and
 memory
- VERY VEBAL - not sure about auditory attention and memory

Visual-Spatial
- can someone explain this to me in "layman's terms"? Please?

Lack of image, poor visual
 recall

Faulty spatial perception and spatial relations


Motor
 
Lack of coordination

Severe balance problems

Difficulties with fine motor
 skills
 

Emotional:
Re Emotional - I worry so much about # 3.  Also, she has sensory issues such as fear of flying, fear of bugs, all lights must be on in the house, she won't wear tight clothes, no tags in clothes, no elastic in clothes, hair brushing is a nightmare for me/her now - I have to pick my battles and let her leave with hair not properly brushed in exchange for agreement to wear a different pair of sweat pants.  I am so tired of arguing in the mornings........
Further:  I am very worried about #3 because depression is high on my side of the family (my 16 year old niece has tried to overdose 2x in 12 months) and I have 2 other immediate and 1st generation family members who have committed suicide.  This keeps me awake every night.  Right now,she is fine but she refuses to tell any outside professionals what is bothering her - she will only share with me/Dad but mostly me.  "She is guarded and determined to present a rosy picture" per the reports I have.

She doesn't know about my niece (whom lives in our hometown) not my other 2 family members.  She doesn't appear despressed.  Am I overthinking this?  Also, I was told by 2 people that I have already changed the "process" in that we are getting her help much earlier in life than, say, my niece received.  Views?

1.  Frequent tantrums, difficulties
 soothing, easily overwhelmed

2.  Fears of new places and
 changes in routines

3.  Prone to depression and
 anxiety as they get older

Anyway, do you know how we can help her in these areas?  I am also reading "A Mind at a Time" Mel Levine and "The Misunderstood Child" Larry Silver.
Thanks in advance.

[keepthefaith]

I have just search NLD/NVLD here and Empeg suggested this test:

"The adaptive functioning evaluation for my dd was completed today by a psychologist whose research has focused on the above. It was the testing that is usually done. Yes, he interviewed me formally with the Vineland. But, he also used a procedure in which he presented my dd with a series of more than 30 social scenarios in which she had to then decide how she would act and why."

I wonder if I should ask for this test privately?
Not for use with the CSE (because I am confident she will be classfied as OHI this 3rd time) but because the Clinical Psychologist (high respected) whom we used for the private testing didn't give me any further insight on NLD but references to more information on the web. I would need to find a doctor who specializes in NVLD.

Also, I have read previously (and I could be mistaken) that NVLD is widely recognized in Europe/other Countries BUT it is not recognized in the US...........
Tks in advance.

[empeg1]

NVLD is not a diagnosis, especially with the DSM-5, in which NVLD is now considered to be under the spectrum of Autism. My oldest also was considered to have NVLD and the developmental psychologist who tested her last September told me the above. She does indeed now have a diagnosis of Autism. She understands math concepts but her arithmetic skills are in the 3rd grade range at 26 years of age, she has difficulty with social thinking (perspective taking especially), in fine motor abilities, especially still with planning, is "clumsy", often with a decreased sense of where her body is in space, poor visual memory, and she also has visual perceptual deficits. The test she was given is still under research; the psychologist developing this measure, which looks at social judgment/understanding of consequences, was the person who tested her. The above measure captured my daughter's core deficit affecting her ability to live independently, with safety, as no other measure could do. BTW, my daughter also has sensory issues, auditory, visual, olfactory, touch, kinesthetic, and…. hypersensitivity. And, anxiety is a big factor as well.

[healthy11]

keepthefaith, for some reason I can't open the link to the waisman.wisc.edu article you posted, but I'm trying to verify if that's where you read about potential emotional problems as "1.) Frequent tantrums, difficulties soothing, easily overwhelmed 2.) Fears of new places and changes in routines 3.) Prone to depression and anxiety as they get older" OR was that what the private doctor said about your daughter in the evaluation report?

I have to mention that my immediate family, too, has been touched by suicide, so I'm always wondering about my son's long-term well-being. FYI, he's also left-handed, but he does NOT have a diagnosis of NVLD (he's got ADHD, dyslexia, and dysgraphia.)

[eoffg]

Non-Verbal Learning/ thinking uses a combination of Spatial processing and Visual processing.
Though with NVLD, it is Spatial processing that is the primary issue.
Yet Spatial processing also works in combination with Auditory processing.

Basically Spatial processing is used to order and organize thinking, and provides the structure.

It is also the foundation of fine and gross motor control.
Where it is used to form an internal spacial map.
As well as an external spacial map, of the world around us.

It is also used for concieving of body language and facial expressions.
Where spacial processing, mirrors these expressions.

Also it what we use to concieve of quantities, and what we associate numbers with.

Though spacial processing is a complex process, using multiple brain regions.
So that their is a wide variation in the what may be effected.

But it is crucial to separate spacial processing and visual processing difficulties, and not simply bundle them together as Non Verbal difficulties?
As this creates a misunderstanding, that it is also visual processing disorder.
When most often, their is no visual processing disorder.
Rather a spatial disorder limits what can be done with visual processing.
As well as auditory processing.

[SharonF]

keepthefaith--

I admire your determination!

About ten years ago, my situation was similar to yours. I researched everything I could about Nonverbal Learning Disability. Here's what I finally concluded:

1) Don't believe everything you read about NLD, even if it was written by a doctor or specialist. Most of the early research was on kids with EXTREME symptoms. Somehow, those extremes became the baseline. But most people with NLD traits, especially girls, do NOT have a long list of extreme symptoms. Instead, they may have one or two strong symptoms. And maybe a few lesser symptoms. But rarely does a child match the lists of extremes developed by Sue Thompson or Byron Rourke.

2) PLEASE PLEASE PLEASE PLEASE don't assume that every NLDer is prone to depression or anxiety. Or has "limited range of affect." Or whatever other emotional extremes are on the checklist for NLD. See #1. Let your dd be herself. Even if she does develop anxiety or depression, DO NOT ASSUME that it's due to NLD. Plenty of people without NLD develop depression. The cause/effect is not certain or exclusive. And if your dd sees that you are worried or anxious, she may internalize your worries. If I had to do it all over again with my two kids, I would worry far less and believe far more in their resilience and abilities.

2) Don't expect the school to learn about NLD or care about NLD. You're right--it's not one of the federally-mandated categories for an IEP. And while NLD is likely an Autism Spectrum disorder, I do not think most NLDers should be given an IEP under the Autism category. Instead, focus on the unique difficulties your daughter is having and how they are affecting her learning. Trouble learning math? Call it that. Trouble learning to tie her shoes or tell time on an analog clock? Use those words. Trouble with abstract reasoning? Call it that and give examples. Can read nearly anything but often has trouble with inferencing ("why" and "how" questions)? Describe it that way. Do the same for everything. It may be NLD. It may be ADHD-in. It doesn't matter. It's best to give the school real-life examples of what she's struggling with. Then come to terms on what IEP category might work best.

Honestly, the same can be said for dyslexia. There is no IEP category for dyslexia. Many teachers *think* they know what dyslexia is, but most do not. So most schools don't care about understanding dyslexia or they use the wrong strategies to help people who are dyslexic. It's best to use words everyone understands and avoid labels or terminology that can be misinterpreted.

I know first hand: you can drive yourself crazy reading the fine print about various learning differences and then trying to get the school to understand. In my wisdom-borne-of-pain experience, neither one is worth it.

Please don't take my words as criticism. I know you care so much about your dd. You simply want to find a way to help her learn and thrive. Sometimes, we Mama Bears over-think things and try too hard---because we love our kids so much!!

[keepthefaith]

Thank you each,very,very much.

I got so involved in it, I sent several emails on the subject to various doctors and such and I have to stop. Healthy, the report states "she has characeristics of NLV,she is NOT autistic though". I just want to understand NVLD and I am having a tough time with comprehension of NVLD.

In a nutshell,though,Sharon, you summed it up and I will (promise) work to sticking to what is important - what is it she needs to succeed in school (where the educators can *relate*) ;-).

Sharon: "I know first hand: you can drive yourself crazy reading the fine print about various learning differences and then trying to get the school to understand. In my wisdom-borne-of-pain experience, neither one is worth it.

Please don't take my words as criticism. I know you care so much about your dd. You simply want to find a way to help her learn and thrive. Sometimes, we Mama Bears over-think things and try too hard---because we love our kids so much!!"

Sharon: Gratitude; more than you'll ever know - no way would I take it as criticism!

Healthy - my condolences; it's hard not to cross that line.

Effog,thank you - I understand your reply! It definitely helps me interpret the report and I am grateful to all of you!

Meeting is the week after next - fingers crossed.

[SharonF]

Keepthefaith--

When you finally comprehend NVLD, be prepared to write detailed papers and begin lecturing about it.

Seriously, I have concluded there's a reason NLD is not in the Diagnostic & Statistical Manual. There's a reason there is no fail-safe checklist that consistently applies to all NLDers. That's because NLD cannot be defined by a simple checklist. People with NLD often present very different traits, gifts and types of struggles.

To me, NLD is not a single diagnosis. Instead, it is general compliance with a broad pattern. No two NLDers are exactly alike. But if you put 100 people with NLD in a room, you'll find some similar traits among the people in that group. And those traits have been recognized as often falling under the broad NLD umbrella.

Or to think of it another way, some diagnoses are like ordering at a restaurant. If you order a hamburger, fries and a coke, that's what you get. The bun at one restaurant may be slightly different than the bun in another restaurant. But there's no doubt it's a bun. With a hamburger in it. And just about everyone who looks at your plate would accurately say you got a hamburger, fries and a coke.

NLD is more like going to a smorgasbord. The person in line in front of you may select very different foods than you select. You're all in the same line. And there is a specific number of food items to choose from. But if you look at the plates of two different people who went through that same line, the food on those two plates may be very different.

Using that example, some NLDers get a heaping helping of trouble reading body language. Or fine motor difficulties. But some NLDers have little or no problem with those aspects. Instead, their "plate" may contain trouble with abstract reasoning. Or social interaction. Or large motor skills. Or facial recognition. Or reading comprehension. A little taste of this. A big serving of that.

Like any analogy, my restaurant examples are not perfect. But I think you get my point. Some diagnoses are easier to recognize and define than others. And some diagnoses almost defy a simple, universal definition. In my experience and my opinion, NLD is not simple to define or explain.

So explain to the school what is on your dd's "plate"--without trying to explain (or personally understand) the entire smorgasbord that we know as NLD.

[keepthefaith]

Perfect
I'm copying this into my notes!  Very easy to understand (but not in the *true* sense) but to understand how to utiliize this to DD's advantage in about 2 weeks!
Thanks so much!