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From an adult with NVLD


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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.


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Jd120478 September 12, 2011


My 6 yr old daughter was just diagnosed with NVLD, at first i thought it was aspergers but they say she is to social. She has this "cocktail talk" so I am assuming that is what they consider more social. Have you heard of this term or do you do this? Just wondering the why and what I should do about the cocktail talk.
Also what do you feel about such the close relation between AS and NVLD. MY concerns with the NVLD is the amount of services she will not receive because its not on the spectrum. Whats weird is that the therapies seem to be the same. Thanks for writing this and for the heads up on drug therapy.

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Angelmomma October 26, 2011


I have a 14year old daughter who was diagnosed with NVLD when she was 8. To say the least it has been very stressful. She is in 9th grade and is struggling with friends. She is saying that her friends aren't talking to her and are ignoring her all together. It baks my heart seeing her like this. Any advice???

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dwgmom November 4, 2011


That was so very helpful. Thank you, thank you. I am so impressed by you. You should consider writing a book yourself. You have so much to share and being able to see things from a child, now adult with NVLD helps us as parents to have more compassion and understanding for our children. It's not always easy on this side of things. I know I've made lots of mistakes, namely my frustration with my ds not understanding directions and being able to have someone verbalize why it is that my child doesn't understand the direction and emphasize that I should be more patient and loving is invaluable. Thanks.

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dee914 May 4, 2012


Thank You!! I have a 22 year old daughter with spin-bifida and an NVLD. Your article is a huge help. My daughter is going to attempt going to a community college. I want to help her as much as I can but we tend to butt heads a lot. Your insight is extremely helpful! Especially your advice on how to frame issues. Brilliant! Thanks again!

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dee914 May 4, 2012


Also..you mentioned you've done a lot of research. I'm wondering what books you've read on the subject and what you'd recommend. My daughter could use a lot of help in the area of socialization and making friends. It sounds like you've made great progress in this area. I would love to know where you got your information.

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nvldmom54 August 29, 2012


I thought my son was autistic for 11 years. Had never heard of NVLD until I happened to come across it on the internet. NO ONE in public schools I have talked to (teachers, admin, school psych) had heard of it. But I knew that this was what I had been looking for. It is my son to a T. We live in a very small community (jr. high school had 300 kids) and since they had no services that fit my son, he ended up in special ed with kids who had behavorial and emotional problems. Not a good fit. When he developed anxiety they wanted to put him on meds and into a class for the "emotionally disabled". the teacher didn't want to take him because he "wasn't bad enough". I have been his mentor/champion since birth. AT age 3 he was in school for 6 hours a day and took speech classes twice a week. I KNOW him. and I knew we had to come up with an answer. So, starting this year, high school, I am home-schooling him. It's working out great. We are using curriculum that meets our state's standards but can go so far above that. We can explore anything he's interested in (as electives) and I'm teaching him the life skills he'll need to live on his own someday (no one taught ME how to balance a checkbook!) He's anxiety-free, happy, healthy, calm, learning and back to being the sweet, helpful, wonderful person he is. I have had to learn a lot on my own since this disability is hard to research (not much out there on it yet) but listening, patience, trust and instinct have gone a long way towards my now 14-yr-old being happy again. I praise all who have helped us in the past; it's just that they couldn't help anymore and so were going in these unacceptable directions. I know home-schooling isn't feasible for everyone but it made our life livable again.

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leslie1956 December 12, 2012


The insights of the original poster were excellent. I'm a 56 year old woman who was just diagnosed with NVLD and thought that NLVDman's comments were very true. I guess that I'd be described as "high-functioning" because I had no serious academic issues outside of higher math and physical sciences, PE and driver's ed from which I was expelled. I had some social issues and I'm sure that I seemed weird, but I always had at least a few friends in my public school days. I went to college and made good grades and later did very well academically in a community college program for respiratory care.

Certainly, I would have chosen another field if I had known about my disability early on, but it's a bit too late at this point! All of my language abilities are pretty intact, my reading comprehension was always stellar, and I'm an excellent writer and with better organization skills than usually reported with this condition. The social issues have applied somewhat to me, but age and working in a field requiring contact with strangers has improved my skills.

I've been able to maintain employment in this field from 1984 until present time. I've worked in the same hospital for 24 years and just now, the requirements of my job have increased to the point of exceeding my ablility to perform well in the emergency room and intensive care areas. Now knowing what I've been contending with, I'm pleasantly suprised that i've done so relatively well in such a difficult field for someone with a NVLD. I'm only three years from early retirement so I'm hoping that either I can get a medical disability or that my union can negotiate to get my retirement early.

The good news for other readers is that you can have a reasonably functional life with a NVLD, but you need to know yourself and your skill base very well. I've very happy to hear that young ones with this disability are being identified and helped early in life, this means that they may make a more fortuitous choice of career. If anyone wants to ask questions, I will try to answer them to the best of my ability.

best wishes to all,
leslie


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nvldmom54 December 26, 2012


To Leslie,
Just wanted to say how glad I am that your life turned out so well without having the benefits these young people have now. Good luck on getting the work situation worked out.
We have discovered that my son has hidden talents in the field of art. He can draw and paint the most amazing works and his imagination is so unrestricted. For his great-grandmother for Cjristmas, I suggested he draw a picture of a flower and he came up with a rose on a plate on a table in front of a window with a view of a vineyard and the ocean! Amazing!
We're lucky in that his dad has his own business and can give him a job. I have noticed that he is influenced (greatly!) by outside sources such as the news, video games, and his Vietnam-vet stepfather and that he worries about greed, unfairness, etc, He gets overwhelmed by the world and I have to tell him not to worry about the world only about HIS world. He often wishes he was living in the 60's "when life was simplier" Sometimes he gets so frustrated (like getting "too many art supplies" for Christmas) that he starts to get angry. So far I have been able to talk him down from it but I worry about when I'm no longer here to do so. He isn't really close to anyone but me and I know I'm going to have to push him to be closer to his dad but he hasn't been around much; I can only hope they become closer as adults.


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adultNVLD January 15, 2013


I am an adult who was recently diagnosed with NVLD and really moved by the post above. I came across it while browsing the web for info.
I am currently seeking counseling but it's been a frustrating process! It seems like my experiences are always minimized or trivialized in an attempt to get me to feel better or "not dwell on it" but the end result is that I feel patronized.

I liken it to someone who is going blind from a vision disease, they have schools to help them cope with life as a blind person, they have strategies, they have plans. They don't go to a counselor who marginalizes it and tells them it could be worse. I am not equating this with blindness, just an analogy that many handicaps have real strategies and options for coping and this one doesn't.

The special education system throughout school, failed me. It was a place to go and do your homework, it was like detention. There was little effort or knowledge in addressing kids who learned differently or had issues learning in the cookie-cutter way the material was presented. I started college but was even more lost, then it was basically a series of entry level jobs.

I guess what I'd like to ask is, if anyone knows of options for adults with learning disabilities who want to
improve or learn to cope, not by talking about your feelings in counseling or taking meds but in doing what the special education programs were SUPPOSED to be doing when I was younger... giving strategies and skills to learn and cope when you aren't able to learn like everyone else does?

I feel like I've been in a holding pattern for my whole life. I can get by, hold a job, pass high school, etc
but I feel my native intelligence would let me do much more if I could learn how to cope with whatever learning problems I have.
I seek out counseling and they are almost surprised why I am there, since I can hold a job, I'm not suicidal or on drugs... it is like unless you really screw up somehow, you should just be happy with your life! Maybe I have had bad luck with finding help.

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Aeromeba June 19, 2013


Hello there. I know that you wrote this over four years ago, but I'm wondering if you are still out there! My son is currently 22 and in college. You wrote a perfect description of him. OMGosh! Thank you. Really made me feel good to read it, and very helpful. What are you doing now? I would love to hear how things are going for you.



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