Advertisement

Home > Learning Difficulties > Special Education Community

From an adult with NVLD


Avatar
 

nvldman January 2, 2009


Hi everyone,


I'm a 22 year old male with a non-verbal learning disability.


I'll share some pieces of advice from someone who's "been there":


1) <u>Explain the disability to your child in real terms and include all its aspects.</u>


The way my school district handled my disability was parent-centered.  I took the diagnostics but only my parents were allowed in the meetings about the results.  They got complex documents explaining this and that test.  Then the information got passed to me by them.  They thought it would hurt my feelings, so they didn't share much.  They didn't tell me much at all.  They told me that I would have trouble in math.  That was it and it wasn't news to me.  They got me extended testing time and preferential seating.


Yet that's all I knew.  Everything was arranged "above my head" and things just happened.  My parents and the school thought that they were shielding me from the stigma of what I had, but that wasn't true.  They would say that "lots of people have trouble in math, so don't worry too much."  The thing is that someone with a NVLD does worry because we realize that things go beyond math.  We have trouble making friends despite sincerely wanting to do so, keeping organized, etc.  If no one else explains why these thing happen, we internalize them and the depression/anxiety comes on.


In my case, I had a lot of trouble making friends.  I always felt like people didn't like me.  So I said, "there must be something terribly wrong with me.  I must be ugly, etc."  It was only during my last year of college that I learned that NVLD people have trouble with social interactions.  No one had ever mentioned that to me.  The disability staff at my schools would say, "go play with the other kids and don't be so shy.  The thing they didn't get is that I understood that other kids didn't want to play with me.  These caring educators would make it worse by forcing the other kids to play with me.  That's not what people with NVLD want.  We want people to associate with other people and have them freely associate with us.


In the last two years, I read several great books on NVLD, social skills training, and assertiveness.  As someone whose strength is learning, not inferring, it helps to be actually taught.  I've connected with some other people with NVLD and we all say the same thing:  yes, parents do need to spell it out for us.  We do not pick things up by osmosis.  We do not observe and then generalize.  Before yelling at a kid with NVLD, look at your own assumptions about what he or she knows.  Simple things like tying shoes may be obvious to you.  They're not to us.  But teach us that tying our shoes will have a positive benefit and we'll do it forever.


There is a lot out there about the "missing piece" of autism.  A lot of kids with autism spectrum disorder are missing some pieces of information.  I would have done much better in high school and college if I knew how my actions made other people feel.  I didn't understand why people didn't want to hang out with me.  I read about ways to show social interest and used them.  Now I have many friends and I know the thinking "traps" that can ruin relationships and the specific strategies for avoiding them.


But the missing piece for me was that I never knew that people disliked me because of a ton of tiny things I didn't notice I was doing.  That's the danger in being polite to people who actually crave getting that kind of constructive criticism.  Too often we just get brushed off without finding out why.  Don't neglect to tell me something I'm doing wrong.  Explain it to me in terms of "it's not you, it's this one changeable thing you're doing" and I'll give you a hug -- not get offended.  So don't lie and tell your kid he or she's special and leave it at that.  We know it's BS and that you're trying to play some game about not hurting I'll feelings.  A little truth at a young age beats an adolescence spent confused.


Genuine self-esteem is good.  Overlooking things and saying that everything is okay is a recipe for personality disorders and self-hate.


A bonus:  we tend to read very well and really dig deep into things.  Think of all those train books, train video sets, and train wallpaper you've been forced to buy.  Sit your kid down and go, "Hey ______, I think I might have a way that you could make some new friends.  Not me making them for you.  You can do it all on your own.  Let's work on this together and then you can do it yourself."  Then bring out the info on social cues, assertiveness (saying "no" was hard when I wanted to be liked by ANYONE), and NVLD in general.  If you can frame it in terms of him or her being able to get the reward, then we'll be eager to take the steps.


I'd hate to break this to any of you, but if we're not eager to learn about our problems, you're probably not framing it right.  You've seen how your NVLD kid can apply himself to toy truck collections.  I've never met anyone with NVLD who would not crawl through a dessert of broken glass to better understand their place in the world around them.


As someone who asked and asked when he was little about why things were going wrong, being told that I was "special" was pretty useless.  I turned myself from a social hermit, unable to keep a job, to being quite sociable with only a weekend of reading.


I'd hate to beat a dead horse here, but it needs to be emphasized because so many parents withhold information in an flawed attempt to hide the truth from their kids.  If you feel like you're letting your kid on the falsity of Santa Claus by telling them their own contribution to problems, then remember these words:  the world is going to teach them these lessons anyway and it will hurt them a lot.  Trust me, anyone with NVLD would far rather learn from their parents than from the world.


2)  <u>Apply discipline like a laser-beam.</u>


Another thing about NVLD people I've known is that we loathe disapproval.  We absolutely hate being yelled at or scolded or even being thought of as dishonest, difficult, or disobedient.  We want to make our parents happy and make friends more than anything else.  We just don't know how to make that happen.  A hard thing for my family was that my Mom would tell me "I told you to do X yesterday and now you're not doing it."  Actually, she told me to do something similar to X but not actually X.  For instance, she would tell me to take my book-bag out of one car.  But the next day we would take another car and I would leave my book-bag in it.


Then she would go, "I told you not to leave your book-bag in the car!"  Then I would say, "You didn't tell me that."  Then she would say, "Now you're lying to me.  No dessert." 


Okay, the main errors here from a NVLD perspective were: a) my Mom assumed that we had the same understanding of the rule; b) assumed that I was lying because I asserted my different understanding; c) assumed that I was not doing my damnedest to go a day without being yelled at for screwing up.


The way she saw the situation was me not listening once again.  I saw it as being yelled at again for something I didn't realize was wrong.  This wasn't effective discipline because it didn't address an intentional behavior.  I would feel like an utter failure because I was doing my best to please.  Eventually my Mom figured it out.  She would say, "Take your bag in with you every day."  That's a universal rule that you can enforce.


Be very specific with discipline and general with instructions.  That makes a world of difference to someone who has trouble generalizing specific instructions to general commandments.  Speaking of commandments, NVLD people like myself tend to like being held to those basic rules known as the 10 Commandments.


If you're noticing a theme, it's that you've got to keep your expectations "normal" but your explanations very much tailored to people who get the most from blunt statements.  I've heard from other NVLD people that their parents lowered expectations rather than adjusting their teaching skills.  That's bad for everyone involved.  The world won't be so kind.


Bonus: Anger usually comes from frustration.  If your NVLD kid seems frustrated, look for what gaps are preventing them from getting what they want.  If they are upset that they can't have a certain toy, explain exactly why and then figure out a solution.  Dr. Spock's parent-child conference BS has spoiled a lot of kids who manipulate the situation, but kids with NVLD have trouble really manipulating.  They're usually trying to find a way to avoid a bigger problem like a temper tantrum.  I wanted a dog when I was a kid.  My parents just kept saying "no."  I got upset and very angry.  Then they explained that my brother was allergic to dogs but that we could eventually get one if I could prove that I could care for one.  Then I switched my focus from pesky asking to planning, in great detail, the steps we would take to get the dog when my brother left for college.  Redirect our attention.  It works.


3) Be trustworthy and you'll get trust back.


I know it's said that NVLD people are very trusting.  This is far too general of a statement.  We're too trusting when we don't pick up the non-verbal cues for danger.  But we tend to see danger in (too) many places, thus our anxiety disorders.


We've generally been rejected in social situations because of stuff we do inadvertently.  If others point those things out to us and parents don't, we tend to think less of them and their ability to be trusted.  It's the opposite of most people.  We don't value white lies or politeness being directed at us.  Sure, we can be very polite if we learn that social more.


We're generally very insecure and afraid of people leaving us.  That's what happens when friends leave for "cooler" buddies all the time.  Kids with NVLD go through a hundred little divorces during school.  We think we've found a friend, then they use us or leave despite us being very nice, giving them lots, and trying our best.  We don't get that we're actually pushing them away.  It's not much of a stretch for a young mind to imagine Mom or Dad picking up and leaving.


I would tell my older brother something and then my Dad would talk to me about it.  I would ask, "How did you know about that?"  He would go, "Oh, I just knew."  Sometimes the process would go in reverse.  Okay, we might have a learning disability but we're not stupid.  We'll see what being modeled and emulate it.  We'll also stop telling you secrets.  It turns out that even kids with NVLD like their secrets kept because often we're very ashamed of our condition and sharing our feelings with just one person is tough but sharing them with two is impossible. 


There's a fine line between families communicating and making kids feel like they're forced to choose between telling one person or everyone.  And don't even try the "we have no secrets in this house" BS.  Yeah, I'm sure every parent lets their kids know how work is going.  It's another double standard that sets off the over-developed moralizing of someone with NVLD.  Remember, we think in black and white.  The grayness of that white lie won't register.


If you want the most from an NVLD kid, listen for a good long time and then provide some input that clarifies the bottom line of what's just been said.  I we go on for ten minutes about something, remember that it probably took us that long to give you anything really useful, so wait and then process.  Then present it in all in concise terms and say, "that's everything you said, right?"


4) Don't Just Do Stuff


NVLD includes inflexibility, as I'm sure you all know.  We like routines and find anxiety in ambiguity.  So whereas many kids would appreciate your help, we will reject it if it's unsolicited and undiscussed.  Any example was me mentioning offhand that I wasn't looking forward to gym class during freshman year of high school.  The next day I was called into the gym office and greeted with, "Your Mom called and said that you were afraid of gym class."  I was upset because a) my told someone else something I said without asking, b) I had no idea this was going to happen.


Another time, I went away to a church camp and came back to find my room completely rearranged.  It was actually traumatic.  Again, it would have been okay if she had told me.  "Surprise!" is something that other kids like to hear.  We don't.  No sudden moves, please.


I'm not saying that you have to ask your kid's permission on anything.  But if you routinely cut them out of things, don't be surprised if they do the same to you.  I found it easiest to share negative things in my life with my parents when I felt like we could work together on them.


5) Stay away from gurus


One thing I learned from doing all this research is that there are a lot of people with good ideas but no one with all of them.  Growing up, my parents took me to see a psychiatrist who would give me medication without worrying if it worked.  It didn't.  If you see your doctor with glowing vision and as a savior, run away.


I don't claim to be a doctor, but most NVLD people I've met say that antidepressants make them angry.  That was very true of me.  Prozac, Luvox, Effexor and Celexa made me agitated and upset.  Be very wary of someone who hands out drugs rather  than a conversation.  I leaned that a "med check" is a joke.  How much can you figure out about someone in 15 minutes?  I know that some people swear by these drugs, so good for them.  There are plenty of alternative medicine quacks out there too.


The bottom line is that a myriad of things came together when I was older and the worked: mindfulness, meditation, psychoeducation, and most importantly learning about how my disability .  Just find out what works.  Don't give any one thing too long.  Results should come about rather quickly.  Mix and match without worrying about being disloyal to one approach or another.  Listen to what your kid is saying.  If you're going to a doctor that they hate, go to another one.  Keep changing until they find one that works.  If we don't warm up to a therapist, don't waste your co-pays waiting. 


Here's another tip: as a kid, I wanted a doctor who resembled who I wanted to be.  I always wanted to be one of the cool kids, so I got along well with a younger doctor who had his own band.  If your kid wants to be a professor, find a doc that looks the part and then point this out.  Even better, find a professor (psychology professors often have private practices) and then have your kid connect with them.   I had a few older mentors who taught me far more than any doctor.  But make sure that all these people are modelling good behaviors.  All kids are sponges and you don't want them soaking up the wrong messages. 


I always found it easier to talk to my parents if my mentors interacted positively with them.  So if your kid is really into planes, find a local pilot who will use planes to teach him/her lessons about respect, dedication, and following rules.  Then see if the pilot can put in a good word for you during one of their meetings.  Something as small as, "you must have great parents if they support you so much in learning about this stuff."


So, those are just my thoughts.  I'll probably post something about college life at some point as well.  Hope this could be some help.  Remember: the easiest way to reduce your stress level is getting on the same wavelength as your kid.  Things get much easier if you talk their language at first to teach them yours.  Those of us with NVLD can live in the larger world but it helps if you bring it to us at first.


Post a reply
Facebook  Digg 

Replies

Sort by:  Oldest first |  Newest first 


Avatar
  

vacekd1001 January 2, 2009


WOW, very useful information. Thanks for sharing your experiences. It is tough to remember to be direct and literal. What were the title and author of the books you read?

Avatar
  

dhfl143 January 2, 2009


nlvdman-

Welcome. Thanks for your contribution. You have provided some valuable insights. Your thoughts are very much appreciated. As a parent, it is beneficial to hear the perspective from the other side.

I hope you will continue to contribute here.

Avatar
  

nvldman January 2, 2009


SORRY for posting this at the top... didn't know how the Comment feature worked. Story of my life...

Thanks for your kind words. I went through decades of pain that I now realize were partly avoidable. My parents also got some white hairs along the way. I think they skipped the gray stage. So, it would mean a lot if I could help anyone else just a little.

vacekd1001, there's two parts to the education of a kid with NVLD. One is just the facts. There's no need to even get a book for that. You can do no better than these articles: http://www2.scholastic.com/browse/article.jsp?id=3892 http://www.nldontheweb.org/heller.htm and http://www.pitt.edu/~groups/nonverbal.html

Then there's the narrative -- putting those facts into the verbal language that works for us. This is where a book is a must. I would suggest anything by Byron Rourke or that carries a review/forward from him. He is quite consistent and no-nonsense about the diagnosis. The vocabulary will be challenging but remember this is our strength. Pull out a dictionary and make sure that you know all the vocab first. I'm sure that you can explain it with examples. We get a kick out of mastery of such adult-level material.

There are a lot of books that use metaphor, pictures, and stories. Those might be good for younger kids, but they tend to emphasize the "special" aspect that can lead to and entitlement sense in a world where accommodations exist. This happens to be one learning disability where a younger child can access a higher-level book.

"A Special Kind of Brain" by Kathy Burger is quite good, although there's that seven-letter S-word again.

You'll notice that most of these books are written for parents or teachers. I think these are better in some regards than ones written for kids. One of the hardest thing for an NVLD kid is to "get" the perspective of other people -- especially what YOU and his/her teachers are going through. It's not that they don't care (we're pretty sensitive about animals and others' pain), it's that we can't always recognize your problems. It's hard enough to recognize our own actions and much harder to speculate about how they make others feel. But we can *learn* those things. That's where a book written for the carers comes in handy. Only then did I started to understand the frustration my parents felt and those tiny steps it takes to lesson them.

There are certain articles that will come across badly. Anything with ulterior motives or have an agenda or criticize a certain approach to NVLD. The approach that works for your kid will come in time. The most important thing is to give him or her the vocabulary to describe his or her thoughts to you. Once words get put to feelings, it makes it a 1000% easier. More than anything, try to build up his or her confidence through introspection. Make it clear that they can solve 90% of their problems on their own and can get a lot more fun stuff by doing it.

One article I would not suggest is the following: http://www.picofdel.org/programs-resources/newsletters/the_link_v2n1.pdf It has some phrases like "motor mouth" that will come off as very pejorative and mocking. I would also avoid anything that shifts blame to others or creates a "pity party." That's disempowering because we NVLD people feel as if we can't change anyone around us. Internalizing change seems at least plausible. Also, we tend to be control freaks so anything to challenge that "me me me" attitude is huge.

A big part of this is getting the child to accept his or her diagnosis. I fought it because of the stigma. I was in denial. I looked around and saw "SPED" kids who could barely read. I thought that I surely couldn't have been one of them. I was the best reader in the school. But I also had poor math skills and few friends. Somehow I didn't put the pieces together on my own (which is really what NVLD is about). Acceptance is the first step to recovery. Pointing out how your child resembles the diagnosis can make that first step happen.

Good Luck!

Avatar
  

dhfl143 January 2, 2009


ncldman - No need to be sorry, your post was great.

The third link that you provided is broken because the comment feature didn't accurately recognize the link. I have provided another link that should direct persons to the same resource:

http://tinyurl.com/9ah98r

Avatar
  

vacekd1001 January 2, 2009


Thanks for the info.

Avatar
  

hope2glorify January 3, 2009


OK...HELP!! I am the parent of a recent highschool graduate who found out very late in life about her NVLD. She seems to understand it, but is very much wedged in place, frozen in time, call it what you like. She won't pursue college because she's convinced she can't make friends. She won't commit to a job for the same people-fear reasons. How do I help her move forward????

Avatar
  

healthy11 January 4, 2009


hope2glorify, is your daughter seeing a professional counselor or therapist? What is your daughter doing with her "days" now that she's out of high school and has no job? Does she have ANY kind of "special interests or hobbies" that might "open doors" to a possible career? I know it's a "generalization" but if she doesn't feel she gets along well with people, how is she with pets or plants? Would she be able to work as a volunteer at an animal shelter or garden center? The local community college by me has a horticultural program, and perhaps you've got something similar in your area...

Avatar
  

hope2glorify January 4, 2009


She was seeing someone but the benefits are limited when you won't talk. She seems to only tell people what she thinks they want to hear. She is going to community college, which I think is great, she deems as part of being a "loser". Yes, she loves animals and we are trying to find a job that involves lots of animals w/no science background, limited people involvement, and no euthanasia. Hard job!
Her days not at school are spent with on line computer gaming and with friends doing the same thing.
Thanks for the company!

Avatar
  

Michele4031 January 7, 2009


That is the best desription of all the problems that i have faced throughout my life. I grew up pretty much on my own and it was hell.I was determined to find out what was wrong with me. I was constantly misunderstood and called names by my siblings and this was very difficult because honesty was always a priority for me.The people pleasing , not able to make friends or keep a job very long when having to work with others were stumbling blocks that caused me anxiety and depression. I think you have described this better than any therapist I have gone to. Is NVld common? I believe this is what my son has as well but also is Dyslexic in addition.I have been getting a better picture with each evaluation but sometimes very different with each doctor but NVLd did come up...Thanks for this post....Michele

Avatar
  

healthy11 January 7, 2009


Michele4031, I'm a parent of a teen with several LDs/ADHD, and I've been participating in forums/support groups for many years, to learn more about my child's issues. To answer your question, I think the use of the internet has allowed many more people to learn about conditions like NVLD and recognize the traits, so it is more common to find people who may have it.
One of the problems, however, is that schools and doctors use different terminology. Schools may provide IEPs for certain "defined" conditions, and not others...NVLD is NOT a recognized eligibility category for kids to get remediation help....(Similarly, dyslexia isn't a term used by schools, but "Reading Disorder" is.) Often, I believe professionals confuse parents by not using consistent terminology, or explaining things in "common language."



Search Community

ADVERTISEMENT