How about NVLD?

[ambivamom]

I just read about this a few months ago.  No one I have been talking to about my son seems to know much or respond to it.  DS is 5 and we are trying to figure out the best way to help him but he is a bright, verbal child who is really good at "acting right" in certain settings like pre-K now, but seems to have a tremendous difficulty reading or responding to emotional cues from other people.  He has always been socially anxious, from refusing to go into new spaces to grabbing my head and banging it with his in order to convince me to leave someplace he was uncomfortable.  He does seem to be learning social skills now that he is in preK, he is jsut much slower than everybody else in this department. 

Anyone have personal experience with a dx of "non-verbal learning disorder"?   Does it look anything like this?

[NataliaI]

It is difficult to fit a child into a label.  At one time, I thought one of my children might fit the NVLD box.  Things shift and change.

If the label seems to fit your ds now and you are getting useful ideas for supporting him by reading about NVLD, use them.  Unless you need a specific label to get specific services, it doesn't really matter.  Most of the therapies overlap significantly.

[ambivamom]

Originally Posted by NataliaI 

It is difficult to fit a child into a label.  At one time, I thought one of my children might fit the NVLD box.  Things shift and change.

If the label seems to fit your ds now and you are getting useful ideas for supporting him by reading about NVLD, use them.  Unless you need a specific label to get specific services, it doesn't really matter.  Most of the therapies overlap significantly.

I agree about labelling.  I keep telling my husband that the only reason I started the "diagnosis" slog was to look for more tools and support.  One of those is that I hope to find some more people who are experienced with sensory problems and nvld, who can tell me their experiences.

[NataliaI]

That's a good reason to seek a label.

You know what though?  YOU are the one who will ultimately know what your child needs.  Reading other's experiences and tools will give you ideas.  It is a good thing. 

But as you keep reading about methods and watching your child, you will figure it out. 

If your main concern for a 5 yo is reading, read some info about late readers.  I know there is a huge push for kids to read early now and that many of them do quite easily.  But there is nothing wrong with learning to read late.

My oldest learned to read well by age 4.  My youngest, now 8, is JUST starting to get the hang of it.  We are a family of readers and this was very surprising.  Last year, in 1st grade, the teacher was concerned.  He HATED reading and even more, being pushed to read.

We kept things light, providing exposure but not pushing (too much ;)).  Now, he wants to read.

Some things just take time.

Check in with your own knowing to help you figure out if this is an issue that needs attention -- or an issue that needs time.

[EliseJ]

Yes, NVLD can look like what you describe.  My son has it and he is now almost 9.

In preschool, he could "pass" and look like all his friends.  However, it took him an enormous amount of effort to play and interact which is what others did so naturally.  He would copy his friend's facial expressions and their mannerisms.  He would also take on their play as his own. 

As he has gotten older his social problems look worse because he has less time to practice skills and observe friendship.  His challenges have become more obvious to those around him.  He can learn how to manage social problems that occur but the children around him get it so much faster.  He looks immature, awkward and blunt in comparison.

Getting proper supports at a very young age is very important with this diagnosis, because children with NVLD are at an extremely high risk for anxiety and school refusal due their difficulty in understanding the world around them.  Because most educators are not familiar with this diagnosis, it is really important for a parent to learn as much as they can, so that they can advocate and help those working with their child to understand why their child acts as they do.  So much that a child with NVLD does will be misunderstood and even punished when a child has no idea what they have done wrong.  I have become a very strong woman being my son's mother and I love him and wouldn't change a hair on his head.  He has a strong sense of justice, fair play, morals and is a loyal true friend.  These are attributes that grown ups are more likely to appreciate.  He will grow into close true friendships as he get's older.  I trust that.  Meanwhile, he still has a nice group of boys that he plays with and we are lucky that he attends a very supportive school that recognizes NVLD and gives him appropriate services.  Still, I have had difficult experiences with some teachers and other parents.  It is a tough road to travel on.

I think it is very important to seek the clarity of a diagnosis for the simple reason that the sooner you can begin to protect your child from being misunderstood and from consequences the more likely it will be that you can protect your child from anxiety, frustration and unnecessary confusion.  Maybe you will learn your son doesn't have NVLD?  Getting a professional perspective will help you to help him.  I wish you good luck and hope that you find many helpful people on your journey.

[VocalMinority]

My twin sons (15) both have NVLD.  They've never had the anxiety in social situations/crowds that you seem to describe.  But that doesn't rule it out for your son, of course.  My boys tend to be pretty upbeat and friendly...then, if you point out to them that something they did hurt someone's feelings or that a person they think is their friend is actually making fun of them, you get a deer-in-the-headlights look ("What?!?!  How can you tell that?")  Long before I knew what NVLD was, I found myself talking them through non-verbal cues, almost like translating a foreign language:  "Try to remember the look on so-and-so's face, just a minute ago.  She wasn't smiling anymore.  Her eyebrows went up.  And she started looking away from you.  That means, 'I've lost interest in what you're talking about.'  Even though you'd like to say more about the Titanic, it's was time to stop telling HER about it and find a new subject."  In other words, my sons seem unaware that they have a deficiency in reading unspoken cues.  But I suppose a child who DID realize, "Everyone else is speaking some 2nd language that I don't even hear!", might prefer to avoid social situations.  That makes sense.

The difficulty is, more than one thing can lead to a kid not fitting in/not responding appropriately to social situations.  If you're sure it's an inability to read nonverbal cues, you're on the right track, looking at NVLD.  But an important way to verify that will be looking at his math skills - and that will take time.  At the kindergarten level, math is completely verbal (learning to recite the numbers in order and remembering basic number sentences, 5+5=10).  So NVLD kids do as well as anyone.  Even when you get into learning multiplication and division tables...that's supposed to be a non-verbal skill, as you make associations in your head (Oh, cool!  If 3 groups of 5 is 15, 6 groups of 5 must be the same thing as 15x2!).  But you can still learn those tables as rote memorization of verbal facts.  The more kids range into math that has to be done in their heads and where they have to conceptualize things, before they can even figure out what they need to put down and work out, on paper...the harder math gets, for NVLD kids and the bigger the disparity between their math and verbal skills.  But the higher a kid's innate intelligence, the longer it may take for this to show up (i.e., the longer he may be able to continue approaching math as a verbal skill).

Just be patient.  If you need a diagnosis so he can get services (a social skills group sounds great, for him!), discuss the verbage options with the powers that be.  If it's obvious that he has social issues, there must be some label he can receive, so he gets what he needs.  Remember, it's in the school system's best interest that he "be all he can be", as well as his own!  But if you feel certain he has NVLD, you can still verbally coach him through how to read non-verbal cues, even if he doesn't get a correct diagnosis until he's older.  I'm not saying you'll "cure" him.  But verbal coaching - over and over and over again - does help, slowly.

[sbgrace]

Time will tell but I think there is a strong possibility my son will eventually get an NLD label. Right now his label is PDD-NOS. HIs areas of spectrum difficulty though center around the areas weak in NLD kids. What we're doing is addressing the things we see using appropriate therapy (i.e. the social stuff with an autism therapy). It seems to work. I did talk to several therapists in the social intervention we have selected for my son (RDI) about the appropriateness with NLD kids. This includes a therapist who specializes in NLD. They all told me that we were on the right track and as much as the social issues (such as reading nonverbals) overlap with autism issues using autism specific ways to address those skills is the best we can do for him.

I did do some work in hopes of improving that conceptual math stuff as well. I've no doubt we're going to run into issues in those areas. I'm using CBT principles for anxiety as it crops up though I may need a therapist help at some point.

I guess my point is if you see weaknesses in certain areas (sensory, nonverbal communication, anxiety) I'd pick appropriate ways to address those and go for it. You don't need a label to address weaknesses. OT is good for sensory stuff, cognitive behavioral therapy a great approach for anxiety, and so many autism therapies to work on social issues you might encounter.

[EliseJ]

Where she will need a "label" however is with her area school system.  Right now, with her child in pre-K it is not as important, but, if I remember from the post, her son will enter kindergarten next year.  This was a difficult transition for my child.  Certainly, every child is different, but, since her son is already showing anxiety, it is important to look ahead to anticipate the kinds of changes he will experience in kindergarten and have the appropriate supports and accomodations provided by staff. 

Children with "NLD" without a spectrum diagnosis can often "look fine" to educators in the very early grades.  However, I cannot stress enough from my own experience how much more helpful and easy life is when teachers and support staff at school are on the "same page" about what is going on for a child.  Teachers can accomodate your child and you may also qualify for OT and speech therapy at school. 

So what would happen if your child's school does not accomodate your child?  It all depends.  My son did not have a diagnosis when he was in kindergarten but a neuropsych eval had shown he had deficits in non verbal reasoning and had the typical 20 point IQ spread.  However, his teacher did not know this.  I was hopeful that my own support for him at home would be enough and that early intervention had helped him "out grow" his deficits.  I hoped that he would continue to grow socially in kindergarten but his teacher found him immature, lacking in social judgement and while she was kind, my son was often "in trouble" because he would copy the behavior of other acting out children.  In retrospect I wish that I had brought everyone on board sooner but I waited until what felt more like a crisis when he was in the first grade. 

This was a process for me, of discovering just what NLD means and how significant a diagnosis it is.  It was also painful to think that he will never outgrow this, only, master skills slowly and understand himself better over time.  I also discovered that bringing school personnel on board helped because they then had altered expectations for his behavior and realized that his actions came from confusion and that he did not need discipline but explanation.  The key to reducing his anxiety was helping the school to understand that they needed to "teach" him social and classroom expectations.

Truly, look for the helpful supportive people to guide you on your path.  There will be educators at your child's school next year who will look out for him, in much the same way that you do now.  They will help you to teach him social skills and problem solving skills, and remove him from anxiety provoking situations and help him regain balance.  Bring them on board with your concerns, have an IEP ready to support him and have them watch out for him with you.

Good luck and all the best.

Edited by EliseJ - 11/27/10 at 6:19pm