NVLD and ADD (very long)

Susan Barton is the one I got my OG training from. I didn’t take a class to get certified in it..Speech Pathology Classes are enough for me right now..as you well know grad school is tough..

I’ve had the same thought. Yesterday as he did IM I was flipping through Pam Tanguy’s book on NLD, and while much of it describes his personality, none of his “symptoms” are that severe. Then I wondered if we hadn’t done OT when he was 4 would he have had such an easy time of riding a 2 wheeler? (she describes the inability to ride a bike as a “hallmark of NLD”) Without the social skills group would he be doing as well at camp this summer? So maybe all the early intervention has muddied the diagnosis . But that’s really good news b/c it means the therapies work.

It was private, like everything else we’ve done with him (sigh - if I had realized when he was 4 this was going to be a lifelong quest I would have gone to the board of ed… oh well.) So the therapist was able to hand pick which kids are in which group. His group had 1 NT child with a hearing loss, 1 with CAPD, 1 I would characterize as ADHD, and my son who is NLDish. ( I haven’ t gotten a dx of NLD despite a 30 pt viq/piq gap, but socially its a useful model for us)

It was good for him to have to deal with the ADHD child who was in his face alot. My son needed to learn how to respond with appropriate language.

I’m interested in the gym based model. There is an OT/social worker in my neighborhood who runs dyad OT sessions. Something I’ve got in the back of my mind if we ever get to the point where there is room in his schedule for social skills work again. Because a little more OT wouldn’t hurt either!

Here is the web site for the program we use:

http://www.academymetrowest.com/

I don’t know if there is anything like it in your area, but we have found it invaluable for both of our kids. They do good work with the kids, and the kids absolutely adore going. So the only down side is the expense… with two going, it costs us a fortune, even with a “sibling discount”.

Karen

While my son does fit the NLD criteria quite closely, I also think that a lot of the things that we did with him instinctively helped lessen the effects. Many of the programs we put him him, just based on what we saw, before any dx, are very much what is suggested for NLD children.

Remember that in Pam’s book, she is talking about all the problems an NLD child CAN have. Every child is different, and few will have the most severe problems in all areas. My son definitely has less trouble in the social areas than a number of the NLD children I’ve met, but has more trouble academically than many have. Still, if you look carefully, most of these kids so at least subtle difficulties in all the areas.

Karen

I was reading this same book yesterday!!! It didn’t seem to fit my son in a gestalt kind of way and I was wondering how accurate it was. It didn’t describe his personality at all, although I could find specific examples that really did. For example, he often will go to his room to find his shoes and not see them sitting by the bed. He was looking for his Harry Potter book (we are reading it to him—he can follow it now that he has seen the movie) and looked under his bed and didn’t see it. Now if his room was more organized (that chapter sounded like him too!!) maybe it wouldn’t be as much of an issue.

I thought the book had good ideas on social skills—breaking it down in some ways I had not thought of.

Beth

In my family my son is seen as the one with the good social skills. He is very friendly and willing to talk to just about anyone. I have a nephew who does not have LD but he barely speaks to me when I call over there. My son will be on the phone for 20 minutes with my sister before I even get the phone.

My son does have some of the aloofness seen in these kids. Sometimes he just doesn’t get it (or maybe not care) that someone doesn’t like him. He makes eye contact with me everytime but I have seen on the few occasions when a very outgoing lifeguard approaches him and engages him in conversation he will look at his feet. With a peer he will maintain eye contact.

When I was a child I was so painfully shy, I wouldn’t look at anyone. I used to walk around staring at my feet. I grew out of it and actually even came to enjoy public speaking.

I would be careful to say a young child has poor social skills. Most young kids have at least some aspects of their social skills that are not advanced.

I’m not sure what you felt did and didn’t fit your son. Pam and I have talked quite a bit, and her daughter seems a little more severely affected than my son in a number of areas. It’s hard to compare in some ways, because her daughter is in a less demanding environment. (a very small Christian school as opposed to a large, academically demanding public school) But her daughter is much more like my son that Rondalyn Varney Whitney’s child. While in the high average range, my son is not gifted. Nor has he EVER displayed the behavioral problems, rages and meltdowns she describes. While I know that this CAN happen with NLD kids, among the NLD children of the parents I know, it seems to be rather rare, particularly among those that have NLD as the primary DX, rather than an incidental finding.

The way Whitney describes her child, it would have been impossible to ignore that this child had a MAJOR problem, even if you didn’t come to a conclusion of NLD. Whereas it is MUCH more common for NLD kids to quite well even through lower elementary school, and not begin to have problems until 3rd or 4th grade, or even middle school.

I thought the book had some useful points, but I don’t think the child described is representative of many NLD kids. She ends the book with the child being ten, and , according to her, looking pretty darned normal. Since most parents don’t even suspect their NLD child even HAS a problem until around that age, I found it frustrating and unrealistic.

Karen

Linda F wrote:

> In my family my son is seen as the one with the good social
> skills. He is very friendly and willing to talk to just about
> anyone. I have a nephew who does not have LD but he barely
> speaks to me when I call over there. My son will be on the
> phone for 20 minutes with my sister before I even get the
> phone.

But being willing to talk to people doesn’t necessarily mean a child has good social skills. More important is whether this is appropriate or not. My NLD son would walk up to people in the grocery store at 18 months and ask for money. It seemed cute and funny at the time, but I now see that this was the beginning signs of socially inappropriate behavior. He wsa tall in preschool and often knocked kids down by flinging his arms around them to hug them. Again, very outgoing and friendly, but socially inappropriate.

At 11, he LOVES playing with other kids, but doesn’t know when to quit. He took a shine to a kid in his class last year. He invited the kid over about 8 times, and the kid never came. When another child refuses a play date that many times, most kids get the hint. My son didn’t. I finally had to talk to him and tell him that I thought that maybe this other child and he just had different interests, but that he needed to stop calling the boy.

There’s a BIG difference between being “social”, and having good social skills.

> My son does have some of the aloofness seen in these kids.
> Sometimes he just doesn’t get it (or maybe not care) that
> someone doesn’t like him.

My son just doesn’t notice. He’s about as aloof (and as easy to turn off) as a half grown labrador puppy!

>He makes eye contact with me
> everytime but I have seen on the few occasions when a very
> outgoing lifeguard approaches him and engages him in
> conversation he will look at his feet. With a peer he will
> maintain eye contact.

From what I’ve seen and herd from other NLD parents, the eye contact thing is very variable among NLD kids. Some don’t seem to have much trouble with it. Other, more Asperger-ish kids avoid eye contact. My son, and another NLD child that I spend time with go to the opposite extreme, and maintain such strong and intense eye contact that it makes people uncomfortable. I think that again, what you need to look at is not whether there IS eye contact, but whether it is appropriate eye contact.

> I would be careful to say a young child has poor social
> skills. Most young kids have at least some aspects of their
> social skills that are not advanced.

That’s definitely true. The problem with NLD kids is that because they don’t learn well by experience or observation, their scial skills do not advance with their peers without direct, and on-going intervention. They end up further and further behind their peers.

This is another reason that so many NLD’ers don’t get identified until middle school. There is a much greater range of developmentally acceptable variation in behavior in younger children. Then the rigid peer-enforced social codes happen in middle school, and these kids are at sea in a boat without a paddle.

Karen

I am glad you have discussed all of this here. My son is going into 3rd and although he doesn’t appear to really fit this part of the deficit I will continue to coach him and keep an eye on things as the years progress.

Some of this seems like timing issues. I remember reading on the interactive metronome sight about how timing affects social interactions. I thought it made sense. I also wonder if the eye contact issue in some kids is somehow related to visual perception.

I think many of the things we need to address have underlying causes, reading -phonemic awareness, losing personal belongings - visual spacial deficts, sports such as swimming - bilateral motor deficits etc. Of course, all of the underlying deficits seem to vary from child to child making it all the more complex.

I am always trying to pick things apart and deal with them one chunk at a time. It is the only way I know how to deal with things.

I haven’t read Whitney’s book so can’t comment on it. I think the thing with Pam’s book is that the child she describes seemed more severe than my child—with a lot of implications that I haven’t seen in my son. For example, she talked about vacations—and going to one place every year. My son does well in novel situations. For example, we went to Disney for the first time ever this past year and he did just fine. Now as a preschooler he was very resistant to change. Wouldn’t put short sleeves on in S. Carolina for several days even in 90 degree heat!!!

I realize you can’t conclude very much from a book—except that I have read other books–like sections out of the Out of Sync Child–and thought “that is my child.”

Beth

Linda F wrote:

> Some of this seems like timing issues. I remember reading on
> the interactive metronome sight about how timing affects
> social interactions. I thought it made sense. I also wonder
> if the eye contact issue in some kids is somehow related to
> visual perception.

It may, at least in some cases. In my son’s case, I think the eye contact thing is an issue of rote learning. His first grade SPED teacher made a big deal about maintaining eye contact, and I think he learned that “piece” very well. But it doesn’t really accomplish what she hoped it would, because his mind can be whirring at 1000 mph, and thinking about something completely different than the topic at hand, and he won’t break eye contact. He’lll even nod appropriate, and can even parrot back what you said. Whether he can turn it around and put it in his own words, so taht you know that HE really knows what you said is another story.

> I think many of the things we need to address have underlying
> causes, reading -phonemic awareness, losing personal
> belongings - visual spacial deficts, sports such as swimming
> - bilateral motor deficits etc. Of course, all of the
> underlying deficits seem to vary from child to child making
> it all the more complex.

Absolutely. I guess that’s why I’m such a strong believer in a good neuropsych eval. I don’t know of a better way of learning HOW a specific child’s brain works. You can have behaviors that look very similar and have different underlying causes, and you can have children who have the same underlying deficits, that due to basic personality differences, express those deficits remarkably differently.

Karen

Sometimes you read a description and get that “this is my kid” feeling. The problem I have is almost every disorder (dyslexia, ADD, NLD) give me that feeling until I dig into it and understand the level of severity required for a dx. My son is only 8 and its been his academic problems that have caused us to really look into his issues. (And academically he doesn’t look NLD - although I know some of those issues really develop later on. At this point he appears to have excellent comprehension, math reasoning, and abstract reasoning skills. Its his reading that is the problem. ) And since kids with dyslexia and /or ADD might also have social skills problems whos to say what the root cause of his issues are? (BTW his social skills issues are subtle and of a pragmatics/ not reading cues nature) I was flipped out last year thinking I was the only mommy who had to sit with her kid to make sure he did his homework - NOT! Most 8 year old boys don’t have that kind of discipline. And then there’s just personality. Some people are more rigid than others.

My son’s new tutor (who is also a psychologist) said “he’s a child unto himself” when I described the lists of things he is and isn’t. Words to remember.

Linda, My son is also only going into 3rd grade, so when I say his academic profile doesn’t fit NLD, people sometimes remind me that it may change as he gets older. I also have decided to just deal with underlying processing issues and not worry about the diagnosis. I know that if he’s NLD the social skills may become more of a problem - its something to watch right along with the academics . On the other hand he may be unique. His avoidance of eye contact was so severe when he saw a psychiatrist for an evaluation of his anxiety , that he spoke to us about Aspergers. But noone, not the OT or the speech therapist who saw him at age 4 , ever saw signs of AS in him. IF he is Aspergerish but the signs are so mild they aren’t detectbale most of the time is it relevent? His speech therapist is the one who told me she thinks the eye contact avoidance has become a learned behavior in response to too much stimulus - hence her recommendation we try IM. It all comes full circle!

Beth from FL wrote:
> I
> think the thing with Pam’s book is that the child she
> describes seemed more severe than my child—with a lot of
> implications that I haven’t seen in my son.

I think that’s definitely true. As with every one of these disorders, there’s a lot of variation in terms of how severely affected the child is. And with NLD, as I’ve mentioned before, while to “technically” fit the dx, the child has to show signs of deficit in ALL the major areas, it’s more common than not that a child will have more trouble in some areas, and less in others. In some kids, the deficits in one area might be quite subtle, or the child may not yet have reached an age where they are taxed in a specific area.

This seems to be particularly true in the social skills area. I have heard a couple of neuropsychologists say that they have evaluated younger kids whose learning profile strongly suggested NLD, but who showed no real social skills deficits when they were first evaluated. Then they see the kids a few years later, and it is obvious that they have not maruted along with their peers in the social areas, and the dx of NLD is much more straightforward. OTOH, I don’t think it does anyone any favors if they hand out a dx of NLD to every child who happens to have a VIQ/PIQ split.

That’s why, when we’ve discussed neuropsych evals, I’ve said that you may or may not get a definitive dx, but you will probably have a better idea of how your son’s brain works. Sometimes you just have to work with what you know, and do some watchful waiting on the other stuff… Which sounds pretty much like what you’re doing anyway.

> For example, she
> talked about vacations—and going to one place every year.
> My son does well in novel situations. For example, we went
> to Disney for the first time ever this past year and he did
> just fine.

Mine do better than I do at amusement parks. Seriously, From speaking to other parents, there’s a lot of variation in this area too. Some families find ways of establishing routines even in unfamiliar places. And some kids have more trouble with some aspects of travel than with others. My kids do fine as long as we have a “base of operations” that is home-like enough that they have their own space for down-time, and as long as we stick to a fairly regular bed-time and meal schedule. So vacation condos have worked well for us, as has staying with relatives.

They don’t do well in hotels, and they absolutely do not sleep in cars, planes, etc. And it’s hard to stay on a reasonable meal schedule if you have to eat out a lot, so, again, somewhere that I can prepare most of the meals when we need them works best. We’ve found that for our family, our travel trailer has been a really, really good answer. We can travel to new places, but everyone has their own familiar bed to sleep in each night, and we eat our own meals on our own schedule.

We also don’t pack as much “touristing” into a vacation as some families seem to be able to. We need lots of “down days”. For instance, when we “did Disney” (thank G_D that’s over!) we were in Orlando for 8 days, but only spent 4 at the parks. the other days were spent hanging out in the condo and using the pool.

> Now as a preschooler he was very resistant to
> change. Wouldn’t put short sleeves on in S. Carolina for
> several days even in 90 degree heat!!!

THAT sounds like my younger one, who DEFINITELY has SI issues. He insists on cocooning himself in blankets, no matter what the temperature. I go in after he’s asleep and peel several layers off a child who is, by that time, in a muck sweat. Of course, this is the same child who, as an infant, would ONLY sleep if completely and tightly swaddled, and then placed in an infant carrier with a bumper pad touching the top of his head. He slept that way until he was at least 6 months old.

> I realize you can’t conclude very much from a book—except
> that I have read other books–like sections out of the Out
> of Sync Child–and thought “that is my child.”

I think that’s because a lot of these things, particularly the SI things overlap a LOT with a number of disorders. Both of my kids clearly have some SI issues. The older tends to be under-reactive, (he will often not even notice a fairly bad injury, and is totally non-tickleable) while the the younger one is your more typical “SI kid”, who doesn’t like bright lights, dark, loud noises, smells, tastes, tags in clothes, seams in socks….

Karen

Just had to chime in because we did Disney this past March. I love it ( I grew up in Fla. and really missed it!) and my kids actually travel well. (My LD son used to need a set sleep schedule, but as he’s matured he’s become more flexible and he eats anywhere/anything ) Anyway, the one thing we noticed was that he did alot of his obsessional talking. It was about good things - rides and souveniers he was excited about. That was when it hit me: his anxious behavior wasn’t only about bad things like reading or the death of a pet, it was also a response to the excitement and sensory overload of Disney. That trip really showed me how he kicks into some of these troubling behaviors as a response to sensory overload. Its the premise on which I’m basing alot of my decisions about his remediation. Thank you Walt.

Yup. In you situation, I’d probably be right where you are… dealing with the known issues, and being watchful. That’s actually just what we were doing when BOTH my sons were that age. Both have hit a wall at the 3rd grade level, something that’s not uncommon in NLD kids.

My older one, (the dx’d NLD one) was reading Harry Potter cover to cover mid-second grade. Sure he was a bit distractable and disorganized, but what 8 year old boy isn’t? It sure didn’t seem like this was a kid with a major disability. You just have to watch and see how things develop.

The big advantage that your son and my younger son have over my older one is that they both have mothers who are better educated than I was when we ran into trouble with my older one. He was my “learning experience”. You are in a position to be able to step in, if it becomes necessary, before a problem causes all kinds of secondary emotional fallout.

Karen

Karen,

You’ve def. convinced me on the neuropsych evaluation. If nothing else, I am tired of putting all the pieces together myself!!! My husband gasped at the cost but then quickly agreed with me that we ought to do it.

Actually, 4 days of 8 at Disney is just sane. My sister-in-law has friends who do just that every year. Your kids may just encourage you to do what everyone should do. We spent two days in a row the first time and it was enough for me, if not for the kids.

Beth

Thanks for the words of encouragement. I’ve really tried to educate myself over the last few months - and this stuff didn’t come out of left field. We’ve been watching him for years b/c he had motor planning issues (mild of course ) in PreK, and some oral motor as well.

Unfortunately for my ds, he can’t read anything cover to cover. His biggest and most important deficit right now is reading. And I’m kicking myself for not being more proactive in getting him evaluated and hiring a tutor in 1st grade b/c his failure to read well this year did create emotional fallout. But we are on it now!

Ok, there you go talking about my son again. When we go to my husband’s family they all think he is ADHD. Meanwhile it is them that are extremely loud and physical, lots of tickling which is the worst thing you can do to an SI kid. It makes my kids act like a complete nut, completely hyper and disruptive. So they get him all hyped up and then say “Why is he like that.” Let me just say that he isn’t that way at home or in school.

I have found that he is much calmer when I find him some quiet time away from everyone else.
For awhile there I just thought it was all the candy they gave him, then I read about SI.

Beth from FL wrote:

> Actually, 4 days of 8 at Disney is just sane. My
> sister-in-law has friends who do just that every year. Your
> kids may just encourage you to do what everyone should do.

Until we learned about NLD, I really didn’t realize that my kids were different from other kids. We just found what worked for our family and did it. I sometimes had to deal with griping relatives and rolling eyes when we would refuse a get-together that interfered with nap times or bed time.

They’d say, “It won’t hurt to let them stay up once in a while! They’ll catch up in a day or two!”

They didn’t know my kids, nor did they have to LIVE with them the next day! That’s another thing Pam Tanguay and I have discussed that is similar between her daughter and my kids. Part of the reason that her daughter and my kids haven’t had “behavior problems” is that without even really realizing it, we accomodated to the needs of our kids at an early age. If we had tried to push our kids to accept or “get used to” a schedule that didn’t work for them, there would have been h—l to pay.

> We spent two days in a row the first time and it was enough
> for me, if not for the kids.

My kids actually have MUCH more tolerance for amusement parks than I do… You must too if you’ve been more than once. ;-) I’ve “done” Disney World, and have no intention of going back in this life time. The kids would like to go again, and I’ve told them they are welcome to… as soon as they can talk Daddy into taking them without me!

Karen

I had to laugh about the naps - I got so much grief about how rigid I was with my son’s sleep. When he was 3 months old we “ferbered” him ie, we aggressively put him on a sleep schedule and stuck to it. And it worked for him and for us. My daughter (non-ld) also got a schedule when she was born. As a result they didn’t nap in strollers or cars only in their cribs. . We also had them on a pretty set eating schedule and I took alot of grief for that too.

While I think the schedule was more important for my son who needed the external structure, the truth is it worked for both kids. Now that they are both older I can be more flexible about it because they are more flexible.

Hi Karen, this thread was getting so long and unwieldy that I started a new thread at the top of the board. Look for my response there!

Karen