NLD schedules LOOK KAREN N

I ‘m always amazed by the number of my kids friends who are still running around the house at 10 PM. LD or not I think kids need more sleep!!! I think my household is a good example b/c my daughter (age 5) still sleeps 11 hours a night. She’s always needed more sleep and honestly she’s the worst one if she doesn’t get it. My son (the LD one) can get by with much less, always has. But he does better with routine.

What I’ve observed about him since he was 12 weeks old, is that he doesn’t always regulate himself , but responds when we give the structure or tools to him. That’s why when we let him cry it out he slept thru the night immediately. He wet the bed from age 4-5, and when we got him a bedwetting alarm (my pediatrician said he wouldn’t normally do it for a 5 year old but my ds was getting anxious ) it worked in 2 nights. Its like his internal system is alittle off, but it responds when we tweak it.
Which is why we are holding our breath to see what impact Interactive Metronome will have.

This discussion of schedules is interesting. When my son was young, he did horrid when he wasn’t sleeping in his own bed. He also had a hard time adjusting to any change. I got conflicting advice from my mother and mother-in-law—one said he needs to be kept home more on a strict schedule and the other said he needs more experiences. Now I had no idea who was right (unlike some of you I did not intuitively adapt to him) so decided to do what I wanted to do. My LD son is my second child and we had not been very rigid with a schedule with the first. We decided not to let him cramp our style too much. Now we paid for it at first–I remember walking around a hotel in Toronto with him in a backpack when he was two trying to get him to fall asleep since he wouldn’t fall sleep in the porta crib we had brought from home. But in the long run he did become more flexible in sleep habits and capable of handling more experiences.

He too needs more sleep than many other kids. I do feel like a frump when I won’t let him stay up at the neighbors until 10 o’clock like the other kids do. But we too pay for it the next day. I also, quite honestly, don’t want to see my kids at 10 o’clock at night!!

Beth

Karen N wrote:
>
> I ‘m always amazed by the number of my kids friends who are
> still running around the house at 10 PM. LD or not I think
> kids need more sleep!!! I think my household is a good
> example b/c my daughter (age 5) still sleeps 11 hours a
> night. She’s always needed more sleep and honestly she’s the
> worst one if she doesn’t get it. My son (the LD one) can get
> by with much less, always has. But he does better with routine.

Oh, I don’t think that having an LD necessarily means they need more sleep. And I have to say, I don’t think all LD kids are as inflexible as NLD kids typically are. Mine both DO need a lot of sleep, but they ALSO really need the structure. I know some NLD kids who less sleep as long as they have a regular schedule.

But I do suspect that, in general, NLD kids need more rest than others because of their physical challenges along with the LD aspects. EVERYTHING (except talking ;-) is hard work for these kids.

> He wet
> the bed from age 4-5, and when we got him a bedwetting alarm
> (my pediatrician said he wouldn’t normally do it for a 5 year
> old but my ds was getting anxious ) it worked in 2 nights.

My older one stopped messing in his diapers at 18 months, and although he wasn’t dry until well after his 3rd birthday, he trained in about a day and a half at that point, and never once wet his bed after he was dry during the day. The younger one was a different story. He was staying dry during the day at 3 1/2, but would ONLY use a diaper for a BM. (so it was safe to send him to pre-school in underpants… he would just hold it till he got that diaper back on) OTOH, he wasn’t dry through the night for a couple of years after that, and even then, only if we got him up to go just before we went to bed. He was probably 7 before we started hearing him get up to use the toilet by himself at night, and found that we could forego our nightly outing with him.

> Its like his internal system is alittle off, but it responds
> when we tweak it.
> Which is why we are holding our breath to see what impact
> Interactive Metronome will have.

Good luck with it. As I’ve mentioned before, it’s something that intrigues me, and I’d certainly consider if we could fit it in both time-wise and financially. But as we’ve discussed, you’ve got to pick and choose, and for now, we need to get the younger one on an even keel emotionally and continue our social skills work. I just don’t see it happening with the older one… He wouldn’t be willing at this point.

Karen

But the thing is, that my kids are now more flexible too, and I did NOT try to make them adapt or become more flexible. So did your son become more flexible because you expected him to adapt to your schedule? Or did he become more flexible because he was developmentally ready to become more flexible?

I assume, because you are a caring, thinking mom, who seems to be right on top of your son’s developmental needs, if you’d found that he DIDN’T start to become more flexible, whether it was adapting or maturing, that you would have tried a different approach. For instance, you certainly haven’t decided that he’ll “just adapt” to the classroom without some help.

My older son MIGHT have adapted to a more irregular schedule. I freely admit that it was my choice to adapt to him rather than the other way around. OTOH, my younger one has always been so rigid, fearful and anxious that every day life was (is) enough of a challenge. We’re talking about a kid who cried every night for a week after we bought him a new dresser. (and he got to pick it out!)

Karen

Quite honestly, I was quite baffled by my son as a preschooler. As I said, he is my second child and I felt like nothing I learned with my first did any good. So it was a lot of hit and miss with a lot of conflicting advice. I had no real sense of what he needed and didn’t know what to do. So, for the most part, I took the advice I preferred.

I remember when we took him to S. Carolina in May from Buffalo where we lived at the time. He would not wear short sleeved shirts for several days in 99 degree heat and would not go in the ocean either. Then he loved the ocean. Then we went to Charleston, S. Carolina for the day. He would not go in a fountain but sat in his stroller. We found though that by the next year, he remembered the beach and it wasn’t a big deal. So we got a sense that he needed a lot of exposure to have cogntive frameworks so that everything didn’t seem new. I think this was a large part of how he got better as he got older.

We also did try my sister in law (a pediatrician) very structured advice but it made us miserable (because we didn’t like being tied down) and didn’t seem to help very much. I remember her telling us to put Nathan down for a nap at a certain time. He was three now and sorta transitional with naps. Nathan found a penny and put it in the plug socket and shorted the socket out (he had removed the child proof plastic things). We decided a regular nap time was too dangerous!!!

I would like to think we would have been more like you if it had been clear that it was beneficial. I know my sister in law who has a Down’s syndrome child is incredibly rigid about nap times and I saw the melt down that results when the schedule is broken once. It made me understand. But who knows. I was much more of a free spirit then—and my husband even more so. It wasn’t Nathan’s learning disablilities that did me in but having a third child!!! We had three before we knew the extent of his disabilities. With three, I was forced to be more structured to survive. So now I am a stodgy parent.

I do agree that he became more flexible as he got older in some ways that had nothing to do with anything we did. The melt down before his birthday party which happened at 5 did not occur at age 7, for example.

Beth

I’m STILL baffled by my second one… That’s why we’re in the middle of a neuropsych! Even though the older one has issues, I understand him better. Maybe because he’s an eternal optimist, and I have the same Pollyanna-ish streak. My husband calls our kids “half empty and half full”. And he’s right. The older one looks on the bright side of everything, to the extent that we have to give him “reality checks” from time to time. (he sits in front of the Olympics, and says “I could do that! That’s not so hard!” The younger one doesn’t believe he can do ANYTHING until he’s proven wrong.

As with your son, we’ve had to work up slowly to new experiences, with small, repeated exposures. He was the last one to swing, the last one to go down the slide, the last one to go into the water… Looking back, I’m sure a lot of this was SI issues, I just didn’t know what that was then.

He used to be terrified when my husband tried to put him up on his shoulders. He would scream and either grab my husband around the neck, choking him, or grab right across his face, endangering his eyes.

Now my older one would have put a penny in a socket if he’d had the fine motor skills to do it. The younger one didn’t get out of bed until we went to get him in the morning for 3 YEARS after we took him out of his crib. He INSISTED on having a gate on his bed until he was much too old to need it. This, and his blanket made it possible to take him places on vaction. If we could push his bed against a wall, put the gate on it and give him his “blankey” he felt safe and could sleep. Without them, the only place he’d sleep was between my husband and me.

We knew the odds were not going to be in our favor if we went for a 3rd child. We figured the odds were even with two of them and two of us. Any more, and we’d be out-numbered!

Karen

you have to pick and choose what works for you and your kids. There is no magic bullet .

BTW , my son also used to stay in his bed for years in the morning until we went and got him. Funny …. I think he was afraid of breaking our “no getting out of bed and bothering mommy and daddy ” rule.

I just read an interesting book on NLD that my son’s IM therapist had lying around. Authors name is Maggie Mamen. Its pretty short, but breaks down NLD into subtypes. The subtypes are fairly typical of other LD’s (written expression, attention) but I found the descriptions helpful. I have trouble when I read high level NLD stuff b/c alot of it doesn’t fit, or is so mild with my son. But her analysis really showed me where he does fit the profile strongly.

Can you find out more details on the book for me? It’s one I haven’t read, and I try to read everything I can on NLD and Aspergers.

Thanks!

Karen

Now, my kid was the exact opposite. At age six *weeks* she decided to give up on naps and stay awake all day. You know those books that tell you the child will wear out with crying and fall asleep? And that one-month-olds can’t turn over? Well, they’re wrong. After three hours of screaming and a reversed, hoarse, but still determined baby, I gave up. I did convince her to nap a little — half an hour of yelling and half an hour of sleep — for a little while between age one and two, but then she gave up on it again. Then the bedtime business. Finally I gave up and decided to look at the kid. She was sweet, smiling, intelligent, *extremely* active and thus underweight, physically coordinated for her age, and just didn’t need that much sleep. So I put her on a mattress on the floor (a twitchy active sleeper — incredibly high muscle tone since birth), put a gate at the top of the stairs so she wouldn’t sleepwalk down, and let her put herself to bed. She went to bed when she needed to at ten, and got up at a reasonable hour in the morning; by age 4 with kindergarten we used an alarm clock and she was good about it. When she absolutely had to do homework, she preferred to get up early and do it before school. People looked at us funny but she is smart and healthy and happy.

PS — she does like order and organization in her life; in kindergarten she complained forcibly about all the noise and disorder and said she couldn’t do her work. She just prefers her own organization and order.

I know people with kids like that too. I think the important point is that you let HER needs drive your decisions concerning how you handled her, and didn’t try to force her into a pattern that wasn’t right for her specific needs.

Karen

I forgot to ask. Is your daughter NLD? Doesn’t sound like it from her early exploits!

Karen

“Nonverbal Learning disabilities and their clinical subtypes: Assessment, Diagnosis, and Management” A handbook for parents and professionls

By. Maggie Mamen

Seems to have been published by Centrepointe Professional services In. in canada.

I liked it because it is fairly short, not too depressing (unlike sue thomas!) , and therefore manageable for my husband to read. : )

Probably doesn’t contain any info. you haven’t seen, but breaks it down into subtypes which really works for my understanding of my child.

Thanks — that was the point I was trying to get across.

__________________________________________________
God only knows what my daughter is (except sweet and beautiful and loving of course!)
Like most of my family including me, she hits 90% of every checklist for LD — except being gifted in reading and most school subjects.

She had very very slowly developing hands, even slower than mine, and could have been called dysgraphic, I suppose, except that it is so obviously a physical thing. At age 15 in Grade 10 she bought shoes in the men’s department (8 1/2 — later shrunk as her arches raised), clothes in the women’s (normal size 10) — and gloves in the children’s, medium. She had hands the size of, and writing the appearance of, a seven-year-old. At nineteen in university she is now almost caught up on that. In elementary school I had to put some pressure on teachers to evaluate her on what she knew and not how fast she wrote it.
She had a weird eye problem, some kind of retinal damage that is so rare it doesn’t even have a syndrome name. I suspect it may have been caused by several high fevers, scarlet fever, pneumonia, etc. in her early youth. At age eight when she had pneumonia and appendicitis and peritonitis it was at its worst and she had very weak detail vision and no night vision, and I was contemplating teaching her Braille if it got any worse; then she started recovering her health and her vision has improved to near normal, although she says she still sees fuzzy edges on everything and she cannot see spiderwebs. She drives a car, and having imperfect vision myself I taught her to triple-check and leave extra room. In elementary school her teachers insisted bad eyes = glasses so we got her some just for peace even though that just is not the vision problem she has; after a year or two she said they didn’t help her any more at all and the ophthalmology professor agreed and threw them in the garbage. I tried to get her classroom accomodations for the eyesight, had doctor’s letter that she was visually impaired, but it was like talking to a brick wall. She inherited my father’s musical giftedness, learned to play clarinet and trombone (rather difficult instruments) well enough to play in the university of MD marching band without any formal lessons. I think her hearing and music have increased even more because of spending several years not seeing well. She tells me she does not visualize *at all*.

She has *never* been able to deal with a standard clock, still makes frequent errors if that is all that’s available, has used a digital watch since age 8.

She did very well in high school but left math after calculus 2 and not doing well in differential equations; and is now majoring in anthropology and linguistics.

So what do you call someone who tutored other kids in Latin but couldn’t write less than half an inch high, tutors kids in calculus but can’t read a clock, remembers Spanish subjunctives but mixes up her mother’s address, is both hyperactive and very quiet? Well on her way to becoming another absent-minded professor, I hope.

NLd is the closest thing I’ve seen to our pattern which is why I read up on it, but we are *good* at math and very cheerful so we don’t exactly fit that profile either.

Well, of course I can’t possibly dx your daughter, I’m just a mom too. But I can tell you that there _are_ NLD’ers who are good at math, and many who do queit well with math other than geometry.

As far as being cheerful is concerned, there’s nothing in the diagnostic criteria that says a person with NLD can’t be cheerful! There are high rates of depression among NLD people, but this is thought to be largely because of the long-term stress of not getting adequate support. With the right kind of help and a caring, nurturing environment, NLD’ers don’t HAVE to be depressed!

My older son would give “Annie” a run for her money in the sunshine department. My aim is to see that he keeps that sunny attitude!

Karen

Thanks! I’ll try to track down a copy. Even if there’s nothing particularly new in it, I’m always looking for easy stuff that I can spoon feed to some of the people we need to deal with.

Oh, and I thought Sue Thompson was a breath of fresh air after cutting my teeth on Dr. Rourke!

Karen

It doesn’t matter too much to us what you call it; I’m too old for it to matter much as my life is what it is, and my daughter seems to be coping well in her own inimitable way (will NOT accept help, usually succeeds and sometimes crashes but picks herself up again.)
Speaking of which, another facet — she has dressed herself and bathed herself since 1 1/2 years old, will NOT accept help — I do encourage independence but this is inborn, long before I even thought of trying to get her to do things alone she grabbed them out of my hands. I’m proud she’s cute, bright, and capable. But boy did we get a lot of funny looks when she was little.
There’s a discussion going on above on this board on what NLD is and isn’t; I tried to give a fairly simple definition from what I’ve read, and was immediately followed by ten people making it more complex again.
A lot of people are saying no social deficit = not NLD. Well, that works for me because I am the one who reads social cues wrong. Except that I am also the one with excellent 3-D visual skills and a math degree so I don’t fit that rule. But the social cues rule doesn’t work for my daughter who, although she tends to be on the edge of groups rather than the middle and to wait a while before joining in, is popular and has many friends and all that.
I try to remind people to keep things simple and be flexible and not to get too tied up with labels, but sometimes it’s like talking to a brick wall. People love to pigeonhole and complicate, and then when the pigeonhole doesn’t work any more what do you do?

I guess the problem is that if you make diagnostic criteria too broad, they become meaningless. And when that happens, it’s harder to get the help this particular type of child needs.

Most important though, until there is some clear evidence that Dr. Rourke’s diagnostic criteria don’t make sense, we should stick to his interpretation… considering that he knows more about it than any of the rest of us.

Karen

I think the problem with overly simple definitions of NLD is that it’s not a simple disorder. It’s pretty complex.

Karen