thanks to all for the NVLD help!!

We have found that it is absolutely essential to find understanding, flexible teachers for our son. Then we make sure that we set up a time for him to meet the teachers and see his new classroom before school starts in the fall. We wlak the route from the bus drop off right to the classroom. I do it once right beside him, and then we do another run on another day where I drop behind a little, and let him prove to himself that he knows the way.

We find that the more familiar he is, the faster he settles in.

You’re right that NLD kids are not very flexible. And they take a tremendous amount of patience because they often need repeated prompting. (sometimes until you feel bkue in the face! But we have yet to find anything that our son hasn’t been able to learn. It just takes more time.

Karen

Thanks Karen for your replies. I am really trying to make the best choices
for my sweet girl. How old is your son?
I recomended that we start after spring break to begin introducing her to who will be her 2nd grade teacher. To begin working through the change. My daughter has already said she wants stay another year with her 1st grade teacher. (this is her second year already!) Anyway, the teacher did not agree that getting her new teacher “on board” soon was a good idea. What do you think?
She is a wonderful teacher and knows my daughter very well—however I know that I need to really be bold in action for what is right for the needs of my daughter.

All of this is so new to me—when I read back over what I have written,
it makes me giggle. I have so many questions and am so hungry for information—it all seems to come bubbling out!! Thanks for your help.
CD

The one we know is NLD is 11, and we have a 9 year old who we suspect may be also… we’re just starting down the testing path with him.

I think it’s important to familiarize your daughter with her new classroom before the first day of school, but I think you may be taking it a little too far in the other direction. I think if you make TOO big a deal out of it now, you may increase her anxiety level in her current classroom and make it harder for her to learn there.

I think I would continue to talk to here about the fact that although she loves the teacher she has now, it is time to move on and learn from someone new and (hopefully) equally wonderful. It would probably help if her current teacher talked to her about it ocassionally too, particularly if your daughter brings it up.

But I think right now, her focus at school should be on learning what she needs to learn NOW, not on worrying about next year. You can deal with that during the less stressful summer months.

Karen

Karen,

My son has a big spread between his verbal and performance IQ. I wasn’t happy with the school’s interpretation of testing (it didn’t make sense) and have talked to a private neuropsychologist. He said this pattern is suggestive of a neurological deficit. I know NVLD is one possibility. Other than a spread between performance and verbal what testing was done to diagnose NVLD in your son?

Beth

Thanks again Karen. I really appreciate your input. It makes so much sense—I think at times I feel nervous about not doing the right thing. I just want things to be easier for my sweet girl—she has had a rough go at school and we still have a long road ahead—We will just be taking it one step at a time.

Usually a neuropsychologist “diagnoses” NLD. My son had about 9 hours of testing, and she also took a very detailed, comprehensive history, and went through all his old school and SPED records, and his original school eval. Part of a good neuropsych eval is watching the WAY the person handles the various tests, not simply recording the scores.

While the VIQ/PIQ split is sort of a hallmark of NLD, other things (depression for one) can cause a child’s PIQ to be depressed, and some people with NLD have other issues that cause them to have a less marked VIQ/PIQ split.

There are a bunch of articles both on this site and the “NLDontheweb” site that go into detail about NLD. But the 3 areas that they look for deficits are, visual/spatial, motor (fine and gross) and social. The amount of impairment in each of these areas varies from one person to another. My son’s biggest problems are in the visual/spatial area, followed by motor. His social issues are more subtle, and you kind of have to know what you’re looking for to spot them. He has a VIQ/PIQ split of 22.

Beyond neuropsych testing, there are a lot of other things you can look into with an NLD child. Our neuropsychologist suggested, and we have followed through with OT and speech& language evals, and we have an assistive tech eval. coming up soon.

In our son’s case, he is extremely one sided, to the point that I knew he was left handed at 3 months, when he first started reaching for things. I have been told by a well-known pediatric neurologist that in the absence of proof to the contrary, she would consider this a sign of early brain trauma, and suggested a functional MRI. We thought about it, but he’s been tested, prodded and “therapied” an awful lot already. It might be interesting to SEE if they could see any anomally in his brain, but even if they could, I didn’t see how it would change what we were doing for/with him. So we have tabled that issue for the time being.

Karen

Karen,

I have read all the articles you referred to. The thing that is puzzling to me is the individual deficits versus the whole child. My son does have visual spatial and fine motor deficits. He has average gross motor skills. I haven’t noticed social deficits but we have a pretty limited number of kids in our neighborhood (a lot of younger) and a boy his age who has clear social deficits. He doesn’t seem to think he has a lot of friends at school but his teacher tells me he is very social. So I am unsure about that but the one thing I have noticed is that he gets really mad. If he doesn’t think a game is being played fairly he gets mad enough to get red in the face. He has a temper.

But when I read your and others description of your NVLD kids, my son doesn’t fit. He goes to his new class in fall just fine with just the typical visit. He doesn’t get lost easily. He doesn’t have trouble learning routines. He can get overwhelmed—but it usually is by noise because of his CAPD. He doesn’t seem to get stressed out any more easily than any other kid. He is more willfully disobedient than your kids seem to be. He says “I am not going to do it” and gets sent to his room, for example. This is over things like helping around the house. A few times of this and he suddenly becomes more helpful. This isn’t much different than my other kids. So I am just confused which is why I was trying to understand how NVLD are diagnosed.

Beth

As I said, the amount of deficit you will see in each area varies tremendously from one NLD child to another. And the amount of social difficulty a child has is also depending on the environment, past experiences and age.

Many NLD children don’t have noticeable social problems until the middle school level, because the social behavior of younger children is just less complex, and easier to understand. Most NLD kids are not like typical AS or HFA kids, many of them very much WANT to be social. But in the extremely rigid and critical world of pre-teens, they often miss signals, and end up doing just slightly the wrong thing to get themselves on the outs with the “important people” in the group. If your son is younger than middle school age, I don’t think you can be sure yet how well he’ll be able to negotiate the social maze.

That said, there are people with NLD that have very little trouble with social issues all the way along. My guess is that these people are less affected in this area, AND either through luck or their parent’s careful planning have been kept in an more structured, socially “safe” and accepting environment.

As far as behavior issues are concerned, NLD kids can look on the surface like they are doing all the obnoxious things other kids do. They are not compliant automatons. The differences are in the motivation or cause of these behaviors.

Now, of course, I can’t tell you whether your son is NLD or not. I’m not a professional, and I’ve never laid eyes on your son. But just to give you food for thought, I’ll go through your comments about your son and put an “NLD twist” on them. Maybe that will help you see if the dx has any ring of truth in it.

I’ll do it in a separate post, just since this is getting long.

Karen

>> My son does have visual spatial and fine motor deficits. He has average gross motor skills. <<

He doesn’t have to have both fine and gross motor deficits, either one will fit the criteria.

>> He doesn’t seem to think he has a lot of friends at school but his teacher tells me he is very social. So I am unsure about that <<

If he FEELS like he doesn’t have friends, he has a problem. The other kids may not be actively mean to him because the school comes down hard on that. But he doesn’t feel like he fits into the social order. That can be harder for a teacher to tell from the adult “outsider” perspective.

>> but the one thing I have noticed is that he gets really mad. If he doesn’t think a game is being played fairly he gets mad enough to get red in the face. He has a temper. <<

This can DEFINITELY be a social skills issue. NLD kids are very black and white, and rule driven. It can drive them nuts when other kids are perceived as “breaking the rules,” in which case they over react. They also have a hard time letting it go and moving on.

>> He goes to his new class in fall just fine with just the typical visit. He doesn’t get lost easily. <<

How big is the school? How long has he gone there? Again, there is a lot of variation in how hard a time kids have finding their way around. Depending on his age and the physical environment, he might not be being severely taxed in that area yet. Or it might not be a major problem for him anyway. It wouldn’t rule out NLD.

>> He doesn’t have trouble learning routines.<<

NLD children learn routines… they thrive on them. But they need to be taught sequentially, and in small steps. I have realized, looking back on it, that I leanred this about my son very naturally from the time he was a toddler, and it just became the way I talked to him and dealt with him. It was so much a part of HOW I interacted with him that I didn’t even realize that he NEEDED this to a greater extent than other kids.

I have seen that in classrooms where the teacher’s natural style is to teach this way, my son needs very little extra support. His teacher last year honored his IEP, and believed that he had this disability, but it truly wasn’t very obvious in her classroom. He did fine there, because her teaching style fit his needs so well. With a less sequential, more demanding teacher this fall, no amount of support was enough to allow us to keep him in the classroom. He was falling apart, and from the teacher’s perspective, he wasn’t trying hard enough. Now after a month in his new classroom, with another very sequential, organized but accepting teacher, we’re getting vibes like, “What’s the problem here? He’s doing great!” (I’d WAY rather deal with that ;-)

>>He can get overwhelmed—but it usually is by noise because of his CAPD. <<

You are attributing it to CAPD, which it certainly could be… there are a lot of behavioral overlaps from what I understand. But if a child has more than one issue, it can be awfully hard to tease our what’s what. I would think that it would be an extra problem for an NLD child to also be CAPD (or vice-versa) since NLD children depend SO strongly on their auditory system to get them through the day. My son has a hearing loss in one ear, and it is very important that he be positioned so that his good ear is toward the speaker. If an NLD child misses a piece of information (whether because of a hearing problem, CAPD, distraction, or just disorganization) they can’t fill in the pieces from the context of the rest of what is being said. They become stuck, can’t go on, and miss all that comes after. No wonder they get overwhelmed.

>> He doesn’t seem to get stressed out any more easily than any other kid. He is more willfully disobedient than your kids seem to be. He says “I am not going to do it” and gets sent to his room, for example. This is over things like helping around the house. A few times of this and he suddenly becomes more helpful. <<

It isn’t at ALL unusual for NLD kids to hold it together during the school day, and then fall apart at home. When my son is under stress at school, his teachers will tell me they see no signs of it. But _I_ see it, becomes extremely argumentative and seemingly “oppositional” at home. In the beginning, I let the school talk me into thinking this wa a “behavior” issue. Since then, I have seen this behavior turned on and off like a light switch depending on whether we can keep the stress level reasonable at school.

For that matter, MANY NLD kids are first identified because of “oppositional” behavior at school. This is a big sign that a kid is being pushed into a corner he can’t get out of. Robbie was on a “behavior contract” at school in 3rd grade, before we learned about NLD, because from the perspective of the teachers, he was “willfully” not doing his work, and “willfully” fooling around. Willfullness can be in the eye of the beholder. Experience has taught me to look at all other possible explanations before assuming a behavior is willfull. I think this may be more true of ALL kids than we know. I KNOW it’s true for NLD kids.

Here is an excerpt from Sue Tompson’s book, “The Source for Nonverbal Learning Disorders” that shows how hard it can be to identify NLD kids if you don’t know EXACTLY what you’re looking for:

“NLD is totally invisible to the casual observer:

*There is no immediate impression of disability.
*The child is probably comely, bright, and extremely articulate.
*His outward appearance is no different from that of his classmates.
*He may seem precocious among his peers.
*His skills may look right on target, until a deeper look reveals that he is putting tremendous effort to front this appearance of “normality.” “

I guess the bottom line is whether thinking about an NLD model would help your son function better. A lot of the interventions appropriate for an NLD child would be helpful for any child who is struggling in these areas, whether they have NLD or not.

Karen

Karen,

Thanks for your food for thought. I thought your social comments were especially interesting. I think my son is rigid about rules and that is the source of his anger at times. I also see him having some problems socially at school, although I can’t pinpoint why. I do think that things have become more complicated and perhaps his skills have not kept up.

His school is very large—1500 kids and not that easy to navigate. I still get lost at times. But he is good with visual spatial on that level. It is more micro—on a page of print for example. But he is much better than he used to be—following PACE.

Noone wants their child to have a disability. I guess I am doubly afraid because my son does not have the strengths typical of NVLD kids because of his CAPD. He has never been on grade level, unlike your son, and I fear that if he truly has both sets of problems we have a very very long road ahead of us. But I am finally getting the point of wanting to know what road we are on.

Beth

” I guess the bottom line is whether thinking about an NLD model would help your son function better. A lot of the interventions appropriate for an NLD child would be helpful for any child who is struggling in these areas, whether they have NLD or not.”

I reread this after sending my message. I think you have a real point here. What kinds of things have helped your son? I remember you posting about limiting the amount of homework.

Thanks for sharing your insights. I appreciate it.

Beth

You are right, it _is_ never easy to hear that your child has a problem, and I know I panicked when I started reading all the stuff (particularly Byron Rourke’s early articles!) about NLD. Some of the articles make it sound really, really scary.

But then you look at your child, and see that they are still the same kid you loved and fought with yesterday. Then it’s time to get as much information as you can, put into place everything that you can that makes sense for your particular child, and set aside the rest.

I have a friend that has an NLD child who is SO different than Robbie. He is socially awkward, and physically WAY behind. He’s 12, and has just learned to ride a bike in the last year. He has a HUGE VIQ/PIQ split (I think it’s close to 50 points) but academically, he seems to fare better than Robbie does. Go figure. The funny thing is although they’re a year apart, the boys get along great with each other, and have since they were in the same Montessori 6-9 class. We purposely put them in the same scout troop this year…

We figured it was easier to teach one set of leadrs about NLD than 2, and the dads can spell each other, going on camp-outs and making sure the two of them are physically safe. The other boy is so obviously less coordinated that I suspect the leaders would naturally keep a close eye on him. But my son, again, puts forth the “illusion of competency” and I can easily imagine him going off to the latrine in the dark and getting lost in the woods.

Karen

I just posted this over on the Teachers board for someone else, but we’ve found that the number one, most important thing is the right teacher. Beyond this, it’s really important for our son to have a SPED teacher or SPED-trained aide in the classroom at all times. He doesn’t need help all the time, so the person doesn’t have to be there just for him. But when he needs help, he needs it THEN. Without cuing to help him remain on task and organized, and to help with transitions from one activity to another, he falls behind the pace, gets lost, gets anxious, and never gets back on track. This is too much to expect of the general ed teacher.

With just little, appropriately timed prompts, he is capable of doing extremely well in the general ed classroom.

He gets pragmatics skills work at school weekly, and meets with the school psychologist once a week too, to try to help him learn to deal with stress better. (I don’t know that this will work, but they wanted to give it a try) He gets keyboarding instruction 3 days a week, and “homework help” after school 3 days a week. In the new class, the homework help might not have been necessary, but now that it’s in place, I hate to mess with it. It’s helping him stay less stressed right now, and after the horrible start to the year, that’s a good thing.

Karen

Here’s the list we gave to the SPED director in the fall when we were grappling with changing Robbie to a new classroom:
====================================================

What we need from the teaching staff:

· Open and frequent communication between parents and teachers (not through the child!)

· A solid understanding of NLD or the willingness to learn about it.

· Teachers who will encourage child to work without pressuring him. This child is easily over-faced, (particularly in the beginning of the year) and his output goes down dramatically when he is.

· Teachers who realize that this child is strongly motivated by praise, and really likes to do a good job. Negative reinforcement is counterproductive.

· Teachers who recognize that an NLD child can often “hold it together” during the school day, only to show the stress they are under outside of school. Teachers who will accept this feedback from the parents and help modify the demands without feeling that the child is getting “special” treatment.

· Teachers who will honor the parents’ decision to cut a homework assignment that we feel is overwhelming, particularly when it is not possible to contact the teacher at the time the decision needs to be made.

· Teachers who understand that novelty directly impacts processing speed, and will give Robbie the time he needs to learn new concepts.

· Teachers who will first think of how the child’s NLD may have impacted a situation without assuming that it is a behavior issue or a “pre-adolescent” issue.
o Pragmatics
o Visual/spatial issues
o Body awareness/spatial/safety issues
o Fine motor issues (output speed)

· Teachers who will deal with these instances as they occur, in a matter of fact, non-punitive manner, and then let them go.

· Teachers who will try to be very clear when communicating with the child, and in cases where he seems non-compliant, to look for what he may have misunderstood.

· Teachers who will alert us (directly, not through the child) of real or perceived behavior problems so that we can help problem solve the situation.

Karen,

I like your list. I can see some things that would apply to my son as well. I gave the special ed director some information on what I thought my son needed (structured, quiet classroom with flexible teacher) but your list is much more detailed.

I’m impressed by the help you have got for your son. The school installed on a trial basis a sound field system in the classroom for my son. It does not seem to have helped. I have been told by the regular teacher that my son doesn’t seem to learn in whole classroom–and that she has to talk to him in a small group or individually. This is frightening to me (whatever the underlying cause—but I suspect it is CAPD) because how can he get through school. She seems to rise to the challenge but how often will that happen. I am thinking of trying to get him homework help after school–to reduce our load at home. How did you get that for your son? I can’t imagine an aide in the classroom here unless your needs were incred. severe, although that would be ideal. But then the school here operates on a resource pull out model not an inclusion one. But the fact is that most kids spent the majority of their day in a regular classroom.

My son reads more easily when the print is at least 14 point. Do you have the same issue at all? I can see this becoming problematic as he gets older unless his eyes mature in some way.

Beth

We DIDN’T get the help we needed for our son until we hired an advocate.

Federal, not state law REQUIRES that once a child is identified in need of an IEP, that they MUST serve his needs in the least restrictive environment. For most (though not all) children, that is the general ed classroom. That education must, again by Federal law, be free and “appropriate”. That means that if your son is not learning in the general ed classroom with a single teacher in the room, they have to do whatever it takes to make sure he does learn. With a child with a specific area of disability, like dyslexia, a pull-out for intense remediation might be in order.

But for a more global problem like NLD or CAPD, it effects EVERYTHING the child does, all day long, and the school must provide for that disability. If a sound system worked, that would be great, but it’s not. I’d next work very hard to get an aide in the classroom for at least the academic periods of the day, if not direct SPED services in the classroom. Tell them that if they can do what is necessary to meet your son’s educational needs, you will need to look for outside placement for them. It’s WAY cheaper for them to provide an aide if your son needs it than it is to pay for an outside placement.

No matter what the state laws are, the federal law is pretty specific. The schools HAVE to provide a free and _appropriate_ public education to children with disabilities. From what I read on these boards, a lot of school systems are skating by doing the very least they can get away with. If parents don’t take them to task, they’ll keep doing it.

Karen

Oh, sorry…. I went off on a “school” tirade and forgot a couple of your questions.

When things were falling apart in the fall, and I said I wasn’t going to allow him to do more than an hour of homework a night, and I was not going to allow THEM to keep him in at recess to finish it, they offered homework help. He goes to the resource room with several other kids for about 40 minutes 3 days a week.

In the old class, he would get enough done there that we could usually get the rest (of his modified homework) done in half an hour later in the evening. In the new class, the homework load is so much less that he often finishes it without modification in “homework help” time, and had the rest of the evening just to relax. I try to have them focus on the long-term projects during that time, because that’s where he really needs the most help, and is most resistant to MY help.

My son doesn’t have any trouble with the size of print at this point. According to the eye Dr., he is _slightly_ far sighted, and he expects that at some point, he’ll probably be more comfortable with reading glasses. But he says that until Robbie wants them, it doesn’t make sense to push it, it’s just an expensive tool to “lose”.

One interesting thing that has happened to Robbie is that he has backed way off on the level of books that he reads. In 2nd & 3rd grade, when he didn’t have to do book reports, he read many, many adult level fantasy books. Once he started 4th grade, and he actually had to do book reports, he backed WAY down, and chooses grade level books. He decodes at a very high level, and obviously finds enjoyment in these harder books, but I think he also realizes that his comprehension and ability to summarize and write a report are not up to the job on those higher level books. In a way, I guess that’s OK, but in another way, I think that exposure to the ideas in those higher level books had to be good for him too.

Karen

Karen,

Is the resource help during the day or after school? If during the day, what does he miss? I noticed on my son’s report card that one option for kids who aren’t doing well at school is after school help. I work so that would still be useful because it would make our evenings easier.

Beth

Karen,

We hired an advocate last year and it didn’t do any good. We ended up with an appropriate IEP (for reading) but then they tried to use the same program that had not been successful with him the year before with him, claiming that the teacher had not been doing it correctly. This, of course, did not make us feel any better. We legally had no input into how they implemented the IEP and while there was no way the program they had selected could implement it, that didn’t seem to matter. In the end we pulled him out of school for part of the day and homeschooled him. I felt like our options at the time were to go to due process and deal with it ourselves.

I certainly came out of that experience feeling like our district will not do anything they don’t want to do regardless of what we do. And I felt we were better off remediating him ourselves than fighting the district legally. I felt like my energy was better spent directly on my son than in fighting the school district.

Now the situation may be very different because it doesn’t seem to the matter of getting the right program but his ability to function in the classroom all together. I have made noises to the special ed director, in discussing the failure of the sound field system, that we need to talk about what options there are. Certainly because of last year’s experience, the powers that be all know that I am very serious about my son’s education and seem to be going out of their way to accomodate me. Now when we talk serious money…..well that may be another issue.

Thanks for all your help. I am glad to know someone is successfuly navigating the special education system.

Beth

“Homework Help” is after school for 40 minutes 3 days a week. Because that wasn’t enough with the teacher he had in the fall, he was also being pulled out for resource 40 minutes once a week during the school day. We had to work with the teachers’ schedule and his schedule to figure the best time to do it. We decided to pull him out of “Health” because it was a class he didn’t like where he’d run into problems with the teacher anyway. Because we were taking him out of a special that he didn’t like anyway, he didn’t resist too much.

In the class he’s in now, the SPED teacher works on Wilson reading with another child during Health, so that time slot was not an option. We’ve let him go without that during-school resourse time, but it’s such a much better environment that he’s doing fine without it.

Karen

Karen

Karen and Beth,
I do not get on line much—so I had a bunch to read through —and what awsome info you have given.
Karen, it really helped when you said it affects the whole child—not just one specific area of learning. We have found that to be so true for our girl—also we have been dealing with her “shutting down” in the classroom and not wanting to continue to work. The student teacher and even her regular teacher seem to feel it is a willful disobiediance and she has been taken out of the classroom to talk to the pricipal and also to call home to let me know of this behavior.
This did not make me feel comfortable because we all know she can do the work. It is the same work she did last year—so it must me something else that is bothering her. Do you have any ideas as to how to work through this “shutting down” behavior. My first thought is that she is feeling anxious about something.
She too is one to hold it together until she gets home—after school can some times be the hardest time of day. I have been just letting her play and do her homework on her own time. That has helped some. Anyway, I feel that something needs to be done so she doesn’t get taken out of class to discuss her behavior, but rather find ways to encourage her—

thank you for your time,
CD

It’s a tough one, but in our son’s case, we had to MAKE them back off and expect less of him, regardless of whether they believed that we were right or not. Fortunately, he came through the way we thought he would, and as soon as the pressure was off, he started performing much better. Then they started raising the expectationbs and pushing, and he crashed again. Took the pressure off, and up he came again. We’ve finally got the SPED department in this school convinced that we are right on this, and next year he has to move to the middle school :-/

I don’t think that dealing with the school is ever going to be easy with these kids.

Karen