SUBJECT: Re:How low must it go? Date: 97-03-18 01:00:28 EDT
From: SuZQ0321
>My son, who is 12, really fits the pattern of NLD- but his psychologist says his performance >scores are 'too high'. His verbal IQ was 127, performance 115. I've read both Pennington and >Rourke and understood them to say that there must be a difference of 10-12 points- but I never >saw anything about a limit on performance scores.Anyone know? Also, does anyone know who >diagnoses NLD in Penna? Thanks.
It's the RELATIVE discrepancy that's important. There's no limit on performance score!!! My son's VIQ is 140 and PIQ 116. He is classic NLD. I wrote the book . . . What can I say? Get a second opinion. Look for a neuropsychologist familiar w/NLD. Also a good educational therapist. Have you read "I Shouldn't Have To Tell You!"?
SUBJECT: Re:How low must it go? Date: 97-03-18 02:48:04 EDT
From: MGordon150
Now, if there is a discrepancy between performance and verbal, does that automatically mean NVLD? My son scored borderline in every performance test, average in Verbal. He has some characteristics of NVLD, but no sure diagnosis. What makes it NVLD? A neuropsychologist only or what? He has problems with writing down his thoughts, the very slow processing speed (for what that's worth), and a fine motor delay. His spelling and handwriting are poor, and the psychologist felt he had a "coordination disability." I also feel he has trouble with making predictions and missing some social cues - like not understanding that he can have an effect on people if he says something mean. Sometimes he sounds very rude when talking with people. However, he has a great memory for names and seems to have a lot of friends. I'm trying to understand what my son's problems are. Obviously, having a report in my hands gave me more questions than answers. Is it fair to say I think I need more testing? Would other tests than the WISC-III and Woodcock Johnson give me more info?
"talking" with all of you and getting your input helped me to refocus and become stronger. I just got off the phone with the Director of my SELPA - I called to ask and question and ended up talking to him for half an hour. He told me to ask for the AlphaSmart Pro, specific academic accomodations to request, was very disturbed at the games the school is playing, told me to remind them of the law, and if they didn't cooperate, tell them I was forced to file for due process!! This is much more than I ever expected. So there are some "good guys" out there. I'll let you know what happens.
Something else of interest: I forget what it's called, but there is something that was developed for hearing impaired students, the teacher wheres a mike and the student has an earpiece, the whole thing is about the size of a walkman. He said they have tried it with a few LD/ADD students and for some it has made a tremendous difference, allowing them to block out the noise and distractions and focus on what the teacher is saying, because her/his voice is coming directly into the student's ear. sounds good to me.
If you mean a correct response if given more time, I think so. It seemed what little I saw of the actual tests that my son got what little he did right.
Martha
SUBJECT: Does this sound like NLD? Date: 97-03-18 21:44:36 EDT
From: EdLincoln
Do these symptoms indicate NLD, dyslexia, anything else, or nothing in particular?
1.) Learned to read slightly late.
2.) Came to read well beyond grade level when he did learn to read, and read frequently and constantly.
4.) Exceptional Vocabulary
5.) Terrible handwriting.
6.) Problems with hand eye coordination and fine motor skills. 7.) Scores on verbal IQ tests that are much higher than scores on performance or visual-spatial tests.
8.) Childhood problems with social skills.
9.) Terrible speling.
10.) Seriouse problems in math.
11.) Seriouse problems with foreign languages.
12.) Dislike of sports.
I also have a set of test scores. What should I look for to see if NLD is present? Is there any "rule of thumb"? (ie, if the scores on X test are such and such an amount above the scores on Y, NLD is probable).
SUBJECT:
Another diagnosed Date: 97-03-18 22:24:37 EDT
From: E503
My 6 1/2 year old daughter was diagnosed with NLD recently. Her verbal and performance scores are almost 50 points different! She had leukemia as a baby and the neurologist and the learning assessment team i took her to told me her disability was because of her chemotherapy and that NLD is very common in kids that had leukemia and brain tumors. Anyways, I read "I Shouldn't Have to Tell You" and also Caitlin's book and I thought they were great!!!!
Boy Ed, I could have written that list myself. Very interested to see if anyone has ideas about diagnosis? How do you differentiate between a very strong visual/spatial learning style with its strengths and weaknesses and Nonverbal learning disabilities or are we saying the same things in different ways or is there a close association between the two?
MSK
SUBJECT: Re:Confusion with NLD Date: 97-03-19 11:33:34 EDT
From: Lookheart
I have a son who has been diagnosed with NLD by a doctor at Children's Hospital in Boston. He recently entered the public school system inclusion program after going to Montessori Schools for 3 years. I find they are so structured which may be good for him, but his creativity, imagination and memory for scientific facts are not being addressed. I have a followup meeting coming up next week concerning his IEP and wonder if you have encountered this and could offer any suggestions for me to ask them to do. Also he is supposed to be in the inclusion program but he does so well with the abc's and 123's they have not found the need to use the special education resource which was built into his first IEP as up to 2 and 1/2 hours.
SUBJECT:
Re: Social Skills Date: 97-03-19 11:36:54 EDT
From: Lookheart
Where do you live, I would love to find such a group for my son. So far
there is a social worker at his school who is trying to start a group but
needs permission from parents. There was one meeting with one other child
and when my son said no one was his friend, the other child just told him
that's not true, everyone is your friend.
SUBJECT: Re: Social Skills Date: 97-03-19 14:55:22 EDT
From: Caitlin35
As for myself, I live in the East Bay of Northern Calif. and we have a group
in Berkeley, CA that addresses the social skills needs of kids wtih NLD and
other neurological problems. If I didn't have an expert around in the area, I
suppose I would get the 2 books on NLD mentioned above, plus Helping the
Child That Doesn't Fit In. I would adapt those exercises and work with my
child by having them be in a group where I could be around and see how they
were doing, then use the skills in the book to "tutor" them where they were
weak...UNLESS my child felt that was too much criticism. Then I would hire a
bright college student to do a similar thing (actually, we have used boys in
high school, with success) and see how that went. Or, you could find a
professional with good group skills and let him/her learn about NLD and do a
group.
SUBJECT: Re:NLD and reading Date: 97-03-20 09:01:27 EDT
From: Lookheart
My 7-year old with a diagnosis of NLD looks at words in books and guesses
what the word is by the first letter and this word is not in context with the
content of the story or the pictures. He recently participated in a first
grade reading program for parents. I was told at first he didn't participate
in practice but after time went on he did. After thinking about it I
realized he had memorized everything by copying what others say and do. I
feel the public school is looking at what he does on the surface and doesn't
realized what is going on in his head and as long as he goes through the
right motions he is doing fine. Any ideas on what I can tell them to work on
with him in his time in the 'learning center', which I am not sure is another
word for timeout center for misbehavior, would be appreciated. So far as far
as I know he has spent no time in the learning center.
My son learned basic math concepts in Montessori where he used a lot of manipulatives. I am sure if he had entered first grade without this background he would have had difficulty with their teaching methods.
SUBJECT:
Re: NLD and reading Date: 97-03-20 10:23:43 EDT
From: PBTanguay
Since I do not know whether your son has a written evaluation by a neuro-psych on file with the school, nor do I know what his program is, it is hard to provide specific suggestions to you regarding this situation. However, my daughter is 12 and is also NLD, and I can share our experiences. She had a great deal of difficulty learning to read initially (at about your son's age). This is quite common for NLD youngsters, and provided they receive the proper intervention, should learn to read quite well. However, there is a school of thought that believes their reading problem will resolve itself with no intervention at all. In my daughter's case, she had resource room time for language arts in the early months of 1st grade until she understood how to "break the code" and then started to catch up with the other children. She is now a very accomplished reader with recreational reading (although somewhat slow). However, fact-based text is another matter. This is very difficult for her, but is not a reading problem per se. It is however, an NLD problem. But that won't be your problem for several years yet - it normally shows up around the 6th grade. By the way, she also memorized everything. She would memorize the stories we read to her at night (word for word), and then read the stories to us. She did this in school initially also and had them fooled for awhile. One of the strengths of these children is excellent memory for rote material. They use it to compensate.
Good luck!
SUBJECT: Re:NLD and reading Date: 97-03-20 11:57:44 EDT
From: Mskh4H1
I'm finding these posts so interesting. I had never heard of NLD before the messages on AOL and haven't had a chance to get the books recommended. Anyone have an opinion about the relationship between NLD and visual/spatial learning style?
My four kids are all gifted, late readers, problems with timed tests and rote memorization, excellent logical thinking and math concepts, poor computation and trouble getting stuff out of their head onto paper. (these all vary in degree from child to child).
Just wanted to share about how my oldest's reading ability increased as he got older. He loved to be read to as a preschooler and was "starving to read" but by second grade was so frustrated he wouldn't even let me read to him. We have state tests here in Texas that are required. He got a 45% in 4th grade, a 75% in 5th, a 93% in 6th, scored 98% on the ACT as a 7th grader in a talent search and lastly somewhere above college level when retested this year for special education as a 9th grader. His oral fluency is still somewhere closer to age level. He says he thinks in pictures and the words just go straight to meaning without conciously thinking of them so he is incredibly fast unless he has to read for details. (Wish I could do that) He often says things like, you know that guy in the story whose name starts with a B or whatever so I don't think he looks at all the letters either. My 12 year old daughter however is incrediably slow but with great comprehension. I wonder if the speed is something she has a natural potential for but has been just "trained" out of.
Sorry this is so long. MSK
SUBJECT: Re:NLD and reading Date: 97-03-20 15:38:12 EDT
From: Lookheart
I asked my 7-yr old son yesterday if he thinks in pictures or in words and
after I gave him an example he answered he thinks in words. He has had a dx
of NLD and I am hoping that what we do for him now will help him to grow out
of it, I have been reading about this for almost 2 years and trying to
understand how to apply it to help him to learn, but am not gifted enough to
come up with some practical ideas. Right now his therapist says it is most
important that his educators learn more about NLD and she is going to his
team meeting next week for that reason.
SUBJECT: Re:NLD and reading Date: 97-03-20 16:45:41 EDT
From: PBTanguay
I think it's great that your therapist is going to the meeting with you. The book which our neuro-psych recommended to our school was "Nonverbal Learning Disabilities - The Syndrome and the Model" by Byron P. Rourke. I know that there are others, and this can be technical, however our school responded well to it in terms of gaining insight.
I'd be interested in what others recommend. Good luck!
SUBJECT: Re:NLD and
reading Date: 97-03-20 20:50:39 EDT
From: Mdeam
What is meant by "break the code"
SUBJECT: Re:NLD and reading Date: 97-03-21 02:18:51 EDT
From: SuZQ0321
"I Shouldn't Have To Tell You!" A Guide to Understanding Nonverbal Learning Disorders is available from Pediatric Building Blocks, 12919 Alcosta Blvd., Suite 10, San Ramon, CA, 94583. $25.00 including tax. Add $5.75 for shipping, handling, and insurance. Written for parents and teachers. The second edition was released in January. See previous posts for more info. Also, "Star Shaped Pegs, Square Holes" written for the child w/NLD is available from Unicorn Press. Look for articles by Rourke, Foss, or Myklebust. Information about Asperger's Syndrome (AS) is also useful.
:-)
SUBJECT: Re:NLD and reading Date: 97-03-21 07:15:21 EDT
From: Lookheart
So far 'they' have not been too interested in reading, my son's psychologist
found a 2 page article on NLD which made it easy for them, and my first
advocate gave them a couple of articles but it just doesn't get through. I
don't think 'they' want to acknowledge it because it might mean a little
extra work or money. I may sound bitter, but it is frustrating when I have
spent the past couple of years trying to learn about this, fighting with
insurance companies and the school to pay for evaluations, paying for
therapy, advocates and private school and then 'they' just look at me and
smile and say everything will be all right.
SUBJECT: Re:NLD and reading Date: 97-03-21 09:53:56 EDT
From: PBTanguay
Mdeam - my definition of "break the code" is when words stop becoming images and have meaning - what they are, what they mean, etc. To a child who can't read, words are just a bunch of letters (code) which have no meaning. Once they figure out what the "code" is, they can begin the process of reading. In our case, the "word family" approach got our daughter moving. They are introduced to words with different first letters such as "at" words - cat, sat, fat, hat, and so forth with the associated pictures of each. There are several different methods, this is just one, and it worked for us.
SUBJECT:
Would love your opionion Date: 97-03-21 12:18:26 EDT
From: Mskh4H1
SuZQO321
I would love to ask what you think about the relationship between visual spatial characteristics and NLD? I tried to write you but get an invailid address. Sorry to put you on the spot.
MSK
SUBJECT: Re:NLD and reading Date: 97-03-21 14:32:04 EDT
From: CHSMom
Would appreciate the name & reference of the 2 page article your psychologist
found. Another great book is Learning Disabilities: Educational Principals
and Practices by Johnson & Myklebust. Because it was written as a textbook,
it is easy to read.
SUBJECT: Re:NLD and reading Date: 97-03-21 15:44:18 EDT
From: Lookheart
The name is Caryl Frankenberger, ED.M. , Non-Verbal Learning Disabilities: an
Emerging Profile, but I don't have the reference.
SUBJECT: Re:NLD and reading Date: 97-03-21 22:26:28 EDT
From: Ratatat
<<'they' just look at me and smile and say everything will be all right.>>
Ah, the promise of tomorrow!
And, the check is in the mail!
SUBJECT: Re:NLD and reading Date: 97-03-21 23:16:53 EDT
From: SusanS29
I would like to suggest that there is more to this diagnosis than merely a large difference between verbal and performance.
I have a daughter who had a 50 point difference between verbal and performance when she was eight (it has narrowed some). However, she was an excellent reader and is to this day. She has lots of friends and you wouldn't pick her out as having any kind of learning disability.
She also has ADD. I would not have wanted her to be labeled "NLD," because
she doesn't fit what the researchers describe behaviorally.
SUBJECT: Copying
Homework from Board Date: 97-03-22 11:30:38 EDT
From: CHSMom
Am in need of IEP suggestions re getting homework assignments in written form. There are two parts of the issue: 1) homework is written on the board and students are supposed to remember (on their own) to copy it down sometime during the 50 minute period (high school); 2) the actual act of copying it from the board. Although my son does not have an official diagnosis of dysgraphia or NVLD (how do I go about getting these?), his Tourette's and ADHD, visual-motor and graphomotor problems, etc. illustrate that he needs this help, not to mention his lack of homework completion. Copying it down into a planner and having the teacher check it does not work. Any ideas?!!
Thanks.
SUBJECT: Re:Copying Homework from Board Date: 97-03-22 12:43:11 EDT
From: ShelleyHL
Does your child have an IEP or a 504 accommodation plan? If so, the
suggestions you make should be part of this plan. If not, you might want to
pursue the need for the above plans. In each, specific goals are set which
are designed to make the educational program more appropriate and accessible
to children with disabilities. ShelleyHL
SUBJECT: Re:Copying Homework from Boa Date: 97-03-22 13:08:49 EDT
From: SuZQ0321
The child w/NLD often has disturbed plane integration. He/she may experience
great difficulty copying at his/her desk (horizontal plane) from the
blackboard (vertical plane). One of the first accommodations you would want
to include in his/her educational plan (be it IEP or 504) is that "any school
assignments which require copying text need to be modified or omitted, owing
to the visual-spatial nature of such an exercise." The child's teacher is
then responsible for presenting this information to the child in an alternate
format. A "study buddy" who takes notes on NCR paper or a "hard copy" of the
work presented on the board should be handed to the student. If the child
were blind, this would be the case, certainly. School staff is just
beginning to be educated regarding the needs of the child w/NLD. I have been
involved in staff inservice training and always make the point: "Don't ask
this child to copy material!" (1) it's not the way he/she learns (active
vocalization and/or subvocalization are the best memory appraoches), and (2)
it is too laborious - - copying from the board becomes a visual-spatial,
finger dexterity exercise for him/her, not a lesson in responsibility! Help
him/her out!!!!!!!!!!!!!!!!!!! : -)
SUBJECT: Re:Copying Homework from Boa Date: 97-03-22 13:19:23 EDT
From: PBTanguay
SuZQ0321 - As a parent of an NLD child I'd like to clone you so that you
could be in our school district!!!!! Everything you said is what we've been
trying to explain to our daughter's teachers for years. Yes, before you ask,
it is in her plan, but although admin. totally understands the issue, each
teacher is another matter. Easier to handle in the lower grades when there
is one teacher, but now that we're in middle school and dealing with 7
teachers, it gets complicated!
SUBJECT: Re:Would love your opionion Date: 97-03-22 13:31:08 EDT
From: SuZQ0321
Sorry about the problems w/AOL. I am getting a lot of reports about e-mail problems. My address is valid, AOL is all messed-up (and over-billing me to boot!). Okay, that's off my chest now . . .
Basically, NLD is a neurological condition resulting from damage to the white matter connections of the right hemisphere, which are important for intermodal integration. Three major categories of dysfunction present themselves: (1) motoric, including poor graphomotor skills, (2) visual-spatial-organizational, including an inability to visualize, and (3) social, including an inability to "read" nonverbal communication. This individual usually has great rote memory skills, is an excellent reader, has a large vocabulary, and "talks too much!" In other words: he/she has STRONG verbal skills.
Some researchers believe NLD falls within the autistic syndrome spectrum,
however there are obvious differences. Visual-spatial abilities are seen as
a strength in the autism models, whereas visual-spatial-organizational
deficits are basic to NLD. These individuals grasp infinite details
without ever grasping "the whole picture." They store information in terms
of words - - not in pictures. The connection between visualization and
organization is also primary. If you do not "see" where things are or how
they should be, you'll have difficulty being "organized" and/or following a
sequence of directions. Often this individual will over-compensate by being
overly organized in a rote fashion - to the point of compulsiveness. If your
child is a stong visual-spatial learner, he/she would most likely not fit the
criteria for NLD, but certainly could be experiencing a related
neuro-psychological disorder. Hope this helps. :-)
SUBJECT: Re:Copying
Homework from Boa Date: 97-03-22 13:35:36 EDT
From: SuZQ0321
Been there!!!! Let's educate them - one teacher at a time . . .
SUBJECT:
Re: Copying Homework from Board Date: 97-03-22 13:55:44 EDT
From: SusanS29
"Although my son does not have an official diagnosis of dysgraphia or NVLD
(how do I go about getting these?), his Tourette's and ADHD, visual-motor and
graphomotor problems, etc"
You don't need a NVLD diagnosis. Wha tyou have is completely sufficient.
You put in the IEP (and don't take no for an answer) that another student
will be given NCR paper to put under his or her assignment page. Your child
Something else of interest: I forget what it's called, but there is
something that was developed for hearing impaired students, the teacher
wheres a mike and the student has an earpiece, the whole thing is about the
size of a walkman. He said they have tried it with a few LD/ADD students and
for some it has made a tremendous difference, allowing them to block out the
noise and distractions and focus on what the teacher is saying, because
her/his voice is coming directly into the student's ear. sounds good to
me.<<
Could you be talking about something called a 'phonic ear?' I have heard of kids in our area trying them with good results. Somehow, the voice of the teacher goes directly to the student. Especially good for ADD kids who have trouble screening out noise. Hope this helps.
SUBJECT: Re:Copying Homework from Boa Date: 97-03-22 18:47:43 EDT
From: Lookheart
How do you teach them? My expertise has never been there. At this point I
have to hire others to do that.
SUBJECT: Re:Copying Homework from Boa Date: 97-03-22 18:54:50 EDT
From: CHSMom
Thank you! (Yes he does have an IEP). Question: Is it then the teachers'
responsibility to come up with the modification? I thought the specific
modification needs to be in the IEP. I'm searching for creative
modifications.
SUBJECT: Re:Copying Homework from Boa Date: 97-03-22 18:58:28 EDT
From: CHSMom
Me too, on both the cloning and the teachers. Secondary level is a unique
challenge. For example, my son is supposed to take a sheet to each teacher
weekly for them to record how he has done that week. sometimes he remembers,
sometimes he doesn't. English - last week she put "improving" (whatever that
means), this week she put "F - missing 8 assignments." I know they weren't
all in the past week. This is the same teacher who said she doesn't want to
be responsible for remembering to give him the homework in hard copy form.
fortunately (I hope) his IEP is Wednesday.
SUBJECT: Re:Copying Homework from Boa Date: 97-03-22 19:02:19 EDT
From: CHSMom
Again, thanks. I answered your previous post before I read this.
SUBJECT:
Re: Would love your opionion Date: 97-03-22 19:16:07 EDT
From: Mdeam
This is an excellent discription of NLD, we have a team meeting this week
(Lookheart) and my
self they may not have read the other infromation we have given them on NLD
I will make sure
they at least read this paragraph and understand it
SUBJECT: Re:Would love your
opionion Date: 97-03-22 20:09:41 EDT
From: Lookheart
Does anyone have the experience of your child not listening to you? I find
that I have to work very hard at getting my son's (age 7) attention to
explain something to him and even then I have to listen to the things he has
on his mind before I can even say anything and even then all I get is an OK
and then another explanation about something he wants to talk about. I
suspect this probably has to do with the difference between expressive and
receptive language but if others have experienced it how do you deal with it
and does it get better?
SUBJECT: Re:Copying Homework from Boa Date: 97-03-22 21:37:56 EDT
From: Ratatat
<Me too, on both the cloning and the teachers. Secondary level is a unique
challenge. For example, my son is supposed to take a sheet to each teacher
weekly for them to record how he has done that week. >
I know one mom who had a problem with 1) the teacher communicating what she needed to know, and 2) the child remembering to get things checked and brought home.
Her solution?
She made a checklist with a table of what she needed to know. Down the left side was her list. To the right of that was a grid with a colum for each day, like quiz or test scores, homework turned in, on task, whatever... . All the teacher had to to was check Yes or No (or test score) for each question for the proper day.
Then the mom had three lines across the bottom: 1) Postive comment for the week:
2) Missed assignments (spell out what), and 3) Upcoming projects or major assignments.
Then she had the teacher fax it to her at the end of the day on Friday!
When she didn't get the fax on Friday, she'd show up at school on Monday morning and WAIT while the teacher filled out the form.
She did that twice. Never again. She received the fax every Friday thereafter.
And, with the communication bridge established, getting the information she needed she could support and set appropriate structure at home to get done what needed to get done - or, when necessary advocate for her child.
He went from lows C's to the honor roll in one marking period.
SUBJECT:
Re: Copying Homework from Boa Date: 97-03-22 23:26:08 EDT
From: Lookheart
Sounds like good advice, I am currently having a problem with a home-school
communication book and may modify this somewhat to satisfy what I need to
know.
SUBJECT: Re:Copying Homework from Boa Date: 97-03-23 01:18:03 EDT
From: SuZQ0321
>>How do you teach them? My expertise has never been there. At this point I
have to hire others to do that.>>
Part of your child's IEP can and should specify inservice training for the
educational staff working with him/her. Your district is then "out of
compliance" if they fail to provide this training. Sorry to say, this works
better in theory than in practice, at least in California. However, a few
school districts in my area have contracted w/me to provide this type of
service. I don't think parents should have to pay. It's the SELPA's
responsibility to provide an appropriate education for your child and that
includes the education of their staff. You have to keep after them. Let's
stop the abuse . . . : -(
SUBJECT: Re:Copying Homework from Boa Date: 97-03-23 09:32:29 EDT
From: Lookheart
Thanks, SuZQ0321 for the point about education of teachers in the IEP, I will
pass this along to my advocate. in a previous message giving a definition of
NLD, you explained it well. However, I have never understood this
visual-spatial problem although I have read about it before. Can you give me
an example of such a problem and whether it can be somehow turned around? I
have a little knowledge of Lindamood-Bell and wondered if that type of
education would help this problem?
SUBJECT: Re:Copying Homework from Boa Date: 97-03-23 10:41:13 EDT
From: Ratatat
<<Part of your child's IEP can and should specify inservice training for the
educational staff working with him/her. >>
I've read the ruling (somewhere in my piles here) that explains how teaching
training is considered an acceptable expense under IDEA. Maybe the schools
need to look this one up.
SUBJECT: Re:Would love your opionion Date: 97-03-23 11:25:25 EDT
From: SusanS29
Does anyone have the experience of your child not listening to you...if others have experienced it how do you deal with it?"
1) If you tend to ramble or add details that turn out to be more important than what you started with, run the conversation through your head first, and stick to the most important points -- only one or two.
2) Use shorter sentences.
3) Engage him actively in the conversation. Have him explain to you what you just said to make sure he understood it.
4) Make the whole conversation very short.
5) Tell him you're going to have him tell it back to you in five minutes.
6) Five minutes later, explain what you said.
If he doesn't know, show no frustration. Hit the main points again, engaging him.
There's a slight nuisance factor here, so that if part of this is *his choice,* it will be simpler to listen more carefully the next time.
But it also "modifies" the conversation to help with any real difficulties he may have.
SUBJECT: Re:Would love your opionion Date: 97-03-23 12:36:09 EDT
From: Lookheart
Thanks for the excellent advice, SusanS29, my husband was just trying to have
a conversation and is going to try again using your advice.
SUBJECT: Re:Would
love your opionion Date: 97-03-23 12:37:08 EDT
From: CHSMom
Ratatat - that's a fantastic idea - thanks! I will definitely include this in the IEP.
SuZQ0321 - I am excited to learn you are in California. May I be so bold as
to ask what part? I am in Southern California.
SUBJECT: Re:Would love your
opionion Date: 97-03-23 18:20:09 EDT
From: Mars000210
Another thought that may be a factor with the communication style your son is
exhibiting is that he may be having trouble holding on to his thoughts. So he
has to tell you his thoughts as soon as he thinks of them or else they are
lost. I and my three children have this problem. In a child this can also be
seen if the child interrupts conversations to tell you either a related
thought to the subject being discussed or an unrelated thought that the
conversation triggered for your child. As an adult it means I don't always
present all the ideas I may have on a subject being discussed becuase I know
now I can't interrupt someone else, but the frustration is that I can't hold
the thought long enough at times to bring it up a few minutes later. My
children now in middle school relalise this happens to them, but they did not
when younger and it caused some diffuculty at times. I would suggest paying
close attention to conversaitons your son has: does he have difficuty with
receptive vs expressive parts of conversatoins, did he really hear what you
said to him ( if not why not, was he paying to much attention to thinking
what he had to say to you or did he hear you but maybe didn't pay atteniton
to the details). Don't jump to conclusions as to why he talks or answers in
the style he does there is usually a reason why kids develope a style and it
may be his way of coping. Take your observatons discuss them with the
teachers at school what do they see ( not what they think) is there a
pattern. Hope this helps.
SUBJECT: Re:Would love your opionion Date: 97-03-23 19:12:27 EDT
From: Lookheart
<Another thought> Thanks for your insight.
SUBJECT: Re:Would love your opionion Date: 97-03-23 21:48:37 EDT
From: PBTanguay
Our daughter also has a problem "holding a thought" until an appropriate time
to have her issue addressed. When she was younger, it was a nuisance, but it
becomes more unacceptable as she gets older. At 12, her friends get annoyed
by her interruptions, as do adults. I have taught her to write it down, then
she won't forget. Sounds simple, but it took some time before she got in the
habit of doing it. Although this isn't always possible, when it is it works
like a charm. Something to consider for parents who have older kids with
this problem.
SUBJECT: Re:Would love your opionion Date: 97-03-23 22:28:21 EDT
From: CHSMom
My younger son, 4th grade, has trouble holding onto his thoughts also. If I make him wait, he forgets. I never thought of it as a language problem, just part of his ADHD. Good suggestion. Since he is also dyslexic and has graphomotor problems, writing it down wouldn't work for him.
SUBJECT: Re:Would love your opionion Date: 97-03-24 02:11:56 EDT
From: Mars000210
Holding thoughts is very hard for younger children, jotting cue words helps
to jog the memory, but as you have observed this isn't always possible when a
child is younger and has difficulty writting. My youngest daughter
experienced this the most out of the four of us. I found that we just let her
have her own style at home. my family and friends would just let her talk
when she needed too and her friends eventually caught on with a few hints
from us as to her coping stye with talking and holding thoughts. This helped
her a lot as she had enough stress dealing with school. We spent a lot of
time talking about why she has to learn ways to cope with this as she has
gotten older and found that her just knowing this is an area of difficulty
has allowed her to cope on her own. She relies a lot on her friends to jog
her memory, just as the teachers do in school. She tries to hold her comments
now and then when it's her turn to speak asks the group to refresh her
memory.
SUBJECT: Re:Would love your opionion Date: 97-03-24 07:14:43 EDT
From: Lookheart
I am constantly amazed to find there is a reason for so many things that are
happening. This forum is great.
SUBJECT: Re:NLD and reading Date: 97-03-24 11:44:11 EDT
From: CHSMom
Lookheart -
I have been unable to find the article you mentioned by Caryl Frankenberger
in your 3/21 post. Would you mind FAXing me a copy? Please email me and I
will give you my FAX #. Thanks a lot
CHSMom.
SUBJECT: Re:NLD and remembering Date: 97-03-25 01:19:29 EDT
From: Caitlin35
We use a lot of "scripts" for things the kids are supposed to do-very
detailed as far as how to wash your face the RIGHT way, etc. Then we post
them where they can see them. They are teenagers, but it doesn't
matter...they need the reminders, and it saves a lot of reminding and being
irritated.
SUBJECT: Re:NLD and remembering Date: 97-03-25 10:49:27 EDT
From: PBTanguay
Caitlin - we do too (our daugher is 12). Morning schedule is taped to the wall at the top of the stairs - steps to do: brush teeth, brush hear, get dressed, etc. Post-its everywhere! And you know what - I use them too!
SUBJECT: Re:Would love your opionion Date: 97-03-25 14:08:50 EDT
From: KevisB
Yes, my son also has trouble holding onto his thoughts, but it does seem to
be getting better with age (now 10). I feel this also impacts on his
frustration with writing. He is trying to learn keyboarding again now using
the Herzog method, but I had to explain to him again that even non-LD kids
and adults could not keep up with their thoughts when trying to write them
down, and that we all need a way to keep our place and thoughts together
while writing. He seems discouraged by this concept.
SUBJECT: Re:Would love your
opionion Date: 97-03-25 15:48:25 EDT
From: SusanS29
"My younger son, 4th grade, has trouble holding onto his thoughts also. If I make him wait, he forgets. I never thought of it as a language problem, just part of his ADHD. "
It isn't a language problem, but it is a communication problem.
He may just have to learn to "let go" of some of the things he wants to say.
It may not all be as important as he thinks it is. :)
SUBJECT: Re:Would love
your opionion Date: 97-03-25 16:02:18 EDT
From: Lookheart
In my son's (7) communication it works like this. If he wants to talk about
something he makes sure we listen, looks into our eyes, makes sure he has our
full attention sometimes by putting our head in his hands and facing it
toward him and tells us in a knowing, intuitive and enthusiastic way what he
is thinking. However when we say we want to talk to him, he continues
whatever he was doing, does not look at us unless we demand it, fidgets or
plays with something and answers in monotonic monosyllables. He repeats it if
we ask him to but we are never sure if it registers anywhere.
SUBJECT: Re:Would
love your opionion Date: 97-03-25 17:36:35 EDT
From: Mars000210
I have another observation which might expain some childrens behavior when
listening or comunicating with others. I and all three of my children agree
that we can't look at a person who is talking to us or when we are
comunicating something to others. We either look down or at somthing else. If
we are looking at the person directly with eye contact we don't seem to be
able to pick up all they are trying to say to us. This can be frustrating to
others as they feel that we are not paying attention or if we are listening
to them they think we are not putting any importance to what they are
relating to us. It is not a problem for me as my friends know that is a
coping skill for me and in my job I usually repeat back the main points of
the conversation and add a remark about the conversation. I have it written
in there IEP at school that the girls may sit and listen in any positon that
facillitates there learning style. I also have a conference with new teachers
to explain why this is in the IEP. Just a foot note, I have also told the
teachers if they are playing with something or drawing doodles or talking
this is goofng off and they should be called on it. So far we have only had
one teacher who misinterupeted the girls behavior, the rest of teachers have
always said that the girls do exhibit this style of not looking at them or
anyone in class when communicating and that they have rarely have a problem
with observing them note paying attention in class. I on the other hand spent
most of my chidhood years being told to look directly at the teacher and to
stop daydreaming, which was quite bewildering to me as a child because I was
paying attention. : )
SUBJECT: Re:Would love your opionion Date: 97-03-25 19:58:07 EDT
From: PBTanguay
Lookheart -
Since your son does respond to eye contact (he initiates it when he has
something to say), try doing the same with him when you want to speak with
him. We did this with our daughter when she was younger for the same reason
you are concerned. Was she really getting it? She may have heard, but did
she process???? So, if we had something important to say to her, even if
that was that is was bed time, I took her face between my hands, engaged eye
contact and said what I had to say. It was obvious when she processed and
when she did. And, she processed a whole lot more when I knew she was fully
Since keyboarding has popped up on the board a couple of times recently, I just wanted to pass on to those who aren't aware of it that there is a great software program called Mario Teaches Typing. We must own five typing programs, but my daughter absolutely loves this one (she's 12). Because of the Nintendo love relationship with Mario, all kids all seem to enjoy the program. And to me, whatever works...
Our school provided us with a laptop and typing program for our daughter. The
laptop is great, the typing program is the pitts! It's by Sunburst - so
beware of schools bearing gifts! Evidently this program is quite common in
schools, and really turns kids off. If your child is taking keyboarding in
school, ask them what the program is? If they say "it's F J, F J" - that's
the one! It's all drill and no fun at all.
SUBJECT: Re:Confusion with NLD Date: 97-03-25 21:19:49 EDT
From: LMardini
i have a sister that needs your help,please e-mail your advices on my
adress sandy9i.
she has mild mental retardation and deslexia,she's not in school,only the
family has been
teaching her as best as they can, but we need a tutor from outside the
family.
please respond to my e-mail adress.thank you for your help,
I don't know how "Mario Teaches Typing" would work with kids who are more visually oriented than mine, but my son absolutely hates it. He doesn't hate it more or less than any of the other typing programs they tried with him, but he does hate it. The letters are being shown on a screen and go by very fast. He processes visual information very slowly to motor.
I took a seminar at Center for Accessible Technology on teaching kids keyboarding. They used the Herzog method to teach the keyboarding skills, supplemented by some other programs for keyboarding practice. His resource teacher obtained the teaching materials and is now teaching him daily using the Herzog method. The difference is night and day between other keyboarding programs. He likes it, and is starting to feel confident on the keyboard. It allows him to use a stronger pathway to learn, which is auditory-motor, rather than the visual-motor of all the other computer programs I have seen.
I just received a copy of "I Shouldn't Have to Tell You" and at first glance
looks like exactly the resource I need to prepare an IEP for next year when
my son goes into the second grade. I am very happy that I found this
reference. Thank you.
SUBJECT: Re:Would love your opionion Date: 97-03-27 21:02:05 EDT
From: SusanS29
"We either look down or at somthing else. If we are looking at the person directly with eye contact we don't seem to be able to pick up all they are trying to say to us."
I had a student with a marked language disability who did this. I had to go
to his teachers and explain each year, because they would think he was
I have found the best way to get a child to touch-type is to give them an on-line name. First they hunt and peck, which allows them to learn where the keys are. Then when they're ready to learn to touch-type, they have an easier time of it.
Many dysgraphic children also have a hard time learning to touch-type, even
though eventually they'll do well with it. Their time table has to be
Since the issue of keyboarding is in my 7-year old's IEP and is not being addressed, "noncompliance"?, I started yesterday getting him online and having him hunt and peck. When a topic interests him, especially Magic School Bus, he shows a great interest in typing himself. Also I found out questions he has in his mind that otherwise he would not express to me. For example, there is currently a van issue, he has been told to sit in the back of the van because it is safer but before that they asked me to tell him to keep still in his seat and not kick the back of the seats. When we were online together I said what kind of question would you like to ask and without the van issue coming up for days he said "How do people know if they are going to crash if they are sitting in the back and can't see anything?"
I am reading "I Shouldn't Have to Tell You" now but find it so hard to think
of the right words myself to explain things to him. I guess I probably used
nonverbal communication more than most all my life being a quiet anxious
person with other people and never really learning the skill of communication
and explanation. This is going to be an ongoing learning experience for both
When we were at the Center for Assistive Technology, the people there added a simple program that read the letters out loud as my child typed them. We had an instant pick-up in speed of about 250%. Auditory motor was the way to go with him, and with his OCD problems, it also made him feel secure that he had not made a mistake in the letter and he didn't have to look at it and check it carefully (which takes FOREVER). I can't remember the name-does anyone know? We don't use it much any more as he got to fast for it...:)
SUBJECT:
Re: Keyboarding Date: 97-03-29 12:06:15 EDT
From: SusanS29
"When we were at the Center for Assistive Technology"
Caitlin where is that?
SUBJECT: Re:Keyboarding and the rest Date: 97-03-29 12:06:26 EDT
From: Grace2al
After eight years of knowing there was something but what it's been clarified. He is definently nld but getting the school to validate that will be my next project. He's eight and has had difficulties since pre-one. not responding to initial hearing test, did a baer he could hear just no responding. I had all his tests done privately as the school focused on his strengths and discounted the rest. viq 141/piq116 fsiq 132 because of the scores the school said they would do the typing program with him but have not implemented it in class. He dictates his H.W. to me and it's amazing the teacher finds him so talented. Personally(meaning w/o ins. or referal) I had him tested at UCSD yes we're in San Diego by a Neuropsychologist and professor. I didn't come across this mess. board until last night after the written report was in and I was looking for resources.
He has slow motor and processing speed, he says it's like getting on line on aol it's all there it just takes awhile to find the file. One of the ideas other then quit timing him in writting and math was to "Modal metacognitive learning skills" I think I know what it means but I'd love a def. of it.
SuZQ0321 where are you? I've appreciated your info as well as others here. As
I am an MFCC and Ph.D. student clinical psych. I may be the one to do initial
inservices at his school. The district psych. is wonderful it's the onsite
resource person thats a bear. Does not want to have another child on the
list. They teach my son typing only because I offered to come on campus DAILY
and do it myself. Hint offer to be there all day HELPING with the teacher
and they find a way to accomadate w/o you. Thanks for listening, now I can go
While there are many ways to interprete the term "metacognitive learning skills", I believe that it refers to the use of mental "maps, templates, and tools" that make everyday learning, storage, comprehension and retrieval more automatic and less effortful.
For example, a simple tool that many children begin to use between the ages of nine and eleven is to sort words by groups that are logically related (e.g., by associative constructs).
This is clearly seen with children who are given a list of unrelated words to learn. Below a certain threshold children will "rote" learn the word list, (i.e., from top to bottom) and after some period of maturation, they will begin to sort the words by underlying concepts (e.g., clothing words, food words, toy words etc). The effect of sorting newly learned words by associated concepts is that it tends to reduce the "load" on working memory and faciliates retention. While the grouping type strategy is not for everyone, it can be explicitly taught, practiced and coached into being as a helpful tool, just in the same way that for some children the "mind map" is a helpful visual organizing tool to be used prior to drafting a written report. I would bet that if the question were opened up there are many respondents to this bulliten board who could identify cognitive tools that have proven usefull in various situations.
I am a private tutor who works with a fourteen year old. In communicating, I found that it helps to say what I am thinking but usually don't say. That's why I think Sue wrote the title, "I Shouldn't Have To Tell You..." These kids love explanations and they want to hear the little things that we usually leave out in the sentence. Once I began to tell these details to my student, she continued and continues to ask questions about information I still leave out. Be sure and take your lead from your NLD child.
This communication process takes time but is well worth it because then the child will find the environment more safe.
I found that as I read Sue's Thompson's book many times, I received new information each time. Also, I found her examples excellent resources to think about in the way I speak to my student. At this point I know what words work; but in the beginning I found choosing the correct words for these literal learners a bit tricky.
SUBJECT: Re:Does this sound like NLD? Date: 97-03-29 18:34:23 EDT
From: Siwel55
I hope someone has answered your question by now; but if not, I think you've got one of those special, great NLD kids. Yes, they learn differently and yes, they deserve a special IEP so that they can feel fulfilled rather than frustrated and hopeless. Sue Thompson's book, "I Shouldn't Have to Tell You" from Pediatric Building Blocks, 12919 Alcosta Blvd., Suite 10, San Ramon, CA 94583 (510) 866 1311 was the only resource I have found that tells it like it is and does so in lay person language. I am a private tutor and have recommended this book to everyone who has mentioned the word NLD!!
SUBJECT:
Re: Keyboarding Date: 97-03-29 18:35:05 EDT
From: Lookheart
As I read Sue Thompson's book I see so much of what my 7-year old is doing,
e.g., I also said 'run to the store' yesterday and he took me literally. One
trouble is trying to explain things to him that I never bothered to listen to
myself before to understand how something is done, another is still getting
him to LISTEN to me. He squirms, makes faces, says he doesn't want to hear
it and I practically have to force him to sit still with my hands and I feel
like I am being too pushy. The last thing is even when I do take the trouble
of going through a long explanation of what "appropriate behavior" is in
detail and he repeats it back to me, he goes ahead and does the inappropriate
I would like to recommend Diana King's Keyboarding Method, out for special ed
kids. It is an alphabetic approach that works rapidly. I highly recommend
it for NLD kids as well as for dyslexic students. In addition there is
another alphabetic approach which is similar. You can reach the author at
ElspethS@aol.com. She will let you know about the details.
SUBJECT: Re:Would
love your opionion Date: 97-03-29 18:50:08 EDT
From: Siwel55
Hi,
I just finished taking an in-service from Sue Thompson in Oakland, CA. She gave a full-day seminar for over 100 teachers. It was great. I highly recommend you get her to come as a consultant to your district. We are very fortunate to have, in my opinion, THE expert in the field, right here in California.
You can contact Sue through Pediatric Building Blocks, 12919 Alcosta Blvd., Suite 10, San Ramon, CA 94583. (510) 866 1311.
Through networking, these students can truly be helped.
When we were at the Center for Assistive Technology, the people there added a simple program that read the letters out loud as my child typed them. We had an instant pick-up in speed of about 250%. Auditory motor was the way to go with him, and with his OCD problems, it also made him feel secure that he had not made a mistake in the letter and he didn't have to look at it and check it carefully (which takes FOREVER). I can't remember the name-does anyone know? We don't use it much any more as he got to fast for it...:)
SUBJECT:
Re: Keyboarding Date: 97-03-29 12:06:15 EDT
From: SusanS29
"When we were at the Center for Assistive Technology"
Caitlin where is that?
SUBJECT: Re:Keyboarding and the rest Date: 97-03-29 12:06:26 EDT
From: Grace2al
After eight years of knowing there was something but what it's been clarified. He is definently nld but getting the school to validate that will be my next project. He's eight and has had difficulties since pre-one. not responding to initial hearing test, did a baer he could hear just no responding. I had all his tests done privately as the school focused on his strengths and discounted the rest. viq 141/piq116 fsiq 132 because of the scores the school said they would do the typing program with him but have not implemented it in class. He dictates his H.W. to me and it's amazing the teacher finds him so talented. Personally(meaning w/o ins. or referal) I had him tested at UCSD yes we're in San Diego by a Neuropsychologist and professor. I didn't come across this mess. board until last night after the written report was in and I was looking for resources.
He has slow motor and processing speed, he says it's like getting on line on aol it's all there it just takes awhile to find the file. One of the ideas other then quit timing him in writting and math was to "Modal metacognitive learning skills" I think I know what it means but I'd love a def. of it.
SuZQ0321 where are you? I've appreciated your info as well as others here. As
I am an MFCC and Ph.D. student clinical psych. I may be the one to do initial
inservices at his school. The district psych. is wonderful it's the onsite
resource person thats a bear. Does not want to have another child on the
list. They teach my son typing only because I offered to come on campus DAILY
and do it myself. Hint offer to be there all day HELPING with the teacher
and they find a way to accomadate w/o you. Thanks for listening, now I can go
While there are many ways to interprete the term "metacognitive learning skills", I believe that it refers to the use of mental "maps, templates, and tools" that make everyday learning, storage, comprehension and retrieval more automatic and less effortful.
For example, a simple tool that many children begin to use between the ages of nine and eleven is to sort words by groups that are logically related (e.g., by associative constructs).
This is clearly seen with children who are given a list of unrelated words to learn. Below a certain threshold children will "rote" learn the word list, (i.e., from top to bottom) and after some period of maturation, they will begin to sort the words by underlying concepts (e.g., clothing words, food words, toy words etc). The effect of sorting newly learned words by associated concepts is that it tends to reduce the "load" on working memory and faciliates retention. While the grouping type strategy is not for everyone, it can be explicitly taught, practiced and coached into being as a helpful tool, just in the same way that for some children the "mind map" is a helpful visual organizing tool to be used prior to drafting a written report. I would bet that if the question were opened up there are many respondents to this bulliten board who could identify cognitive tools that have proven usefull in various situations.
I am a private tutor who works with a fourteen year old. In communicating, I found that it helps to say what I am thinking but usually don't say. That's why I think Sue wrote the title, "I Shouldn't Have To Tell You..." These kids love explanations and they want to hear the little things that we usually leave out in the sentence. Once I began to tell these details to my student, she continued and continues to ask questions about information I still leave out. Be sure and take your lead from your NLD child.
This communication process takes time but is well worth it because then the child will find the environment more safe.
I found that as I read Sue's Thompson's book many times, I received new information each time. Also, I found her examples excellent resources to think about in the way I speak to my student. At this point I know what words work; but in the beginning I found choosing the correct words for these literal learners a bit tricky.
SUBJECT: Re:Does this sound like NLD? Date: 97-03-29 18:34:23 EDT
From: Siwel55
I hope someone has answered your question by now; but if not, I think you've got one of those special, great NLD kids. Yes, they learn differently and yes, they deserve a special IEP so that they can feel fulfilled rather than frustrated and hopeless. Sue Thompson's book, "I Shouldn't Have to Tell You" from Pediatric Building Blocks, 12919 Alcosta Blvd., Suite 10, San Ramon, CA 94583 (510) 866 1311 was the only resource I have found that tells it like it is and does so in lay person language. I am a private tutor and have recommended this book to everyone who has mentioned the word NLD!!
SUBJECT:
Re: Keyboarding Date: 97-03-29 18:35:05 EDT
From: Lookheart
As I read Sue Thompson's book I see so much of what my 7-year old is doing,
e.g., I also said 'run to the store' yesterday and he took me literally. One
trouble is trying to explain things to him that I never bothered to listen to
myself before to understand how something is done, another is still getting
him to LISTEN to me. He squirms, makes faces, says he doesn't want to hear
it and I practically have to force him to sit still with my hands and I feel
like I am being too pushy. The last thing is even when I do take the trouble
of going through a long explanation of what "appropriate behavior" is in
detail and he repeats it back to me, he goes ahead and does the inappropriate
I would like to recommend Diana King's Keyboarding Method, out for special ed
kids. It is an alphabetic approach that works rapidly. I highly recommend
it for NLD kids as well as for dyslexic students. In addition there is
another alphabetic approach which is similar. You can reach the author at
ElspethS@aol.com. She will let you know about the details.
SUBJECT: Re:Would
love your opionion Date: 97-03-29 18:50:08 EDT
From: Siwel55
Hi,
I just finished taking an in-service from Sue Thompson in Oakland, CA. She gave a full-day seminar for over 100 teachers. It was great. I highly recommend you get her to come as a consultant to your district. We are very fortunate to have, in my opinion, THE expert in the field, right here in California.
You can contact Sue through Pediatric Building Blocks, 12919 Alcosta Blvd., Suite 10, San Ramon, CA 94583. (510) 866 1311.
Through networking, these students can truly be helped.
Are you or anyone familiar with these syndromes in chidren five years old or younger? And the different ways they may present in younger children?
SUBJECT:
Children under 5yrs of age Date: 97-03-30 01:39:10 EDT
From: Pacheetah
Does anyone have information on NLD or Asbrger's in children under 5yrs old or younger. I'm interested in how these syndromes may present differently in children this young as opposed to school age children.
Thanks
SUBJECT: Re:Children under 5yrs of ag Date: 97-03-30 16:19:45 EDT
From: Grace2al
Just from personal experience? My son wouldn't respond to auditory or visual
ques in the enviornment. He had no interest in puzzles(now I know why), when
playing with blocks would get frustrated because he couldn't get them to
"work" right. Didn't speak babbling but when he did out came words then
shortly after full sentances. The lack of social interaction that was there I
now also know came from not picking up on non-verbal social ques. He is very
polite and well behaved his lack of social grace now age 8 is when he doesn't
realize that it's called for. Being in a Montessori preschool was helpful as
he could work/play at his own pace and learn via many avenues.
SUBJECT: Re:tech
center Date: 97-03-31 01:56:57 EDT
From: Caitlin35
The Center for Assistive Technology is in Berkeley, CA. They have a program where you can bring your child and tell them what s/he needs, and they will try to find the technology to assist in learning-and the range of programs they have is great. They offer all sorts of classes, too, in keyboarding and many other things, but it's a little too far for us to go to do that.
SUBJECT:
Re: Social Skills Date: 97-03-31 08:32:08 EDT
From: Lookheart
Caitlin35-I live in MA, a little behind CA as I read in terms of specifics
concerning IEP-I have already gone through 3 professionals to work with my
son who say token systems are the way to go, however, after reading Sue
Thompson's book it seems not to be. With all the adults and transitions my
7-year old has made in the past few years, I hate to change therapists again,
also I like his current therapist. She doesn't know of any parent of NLD
support groups in our area, nor any social skills training groups, except for
one that uses tokens and includes mostly other kids with problems not those
who are good role models. I'm still looking around and will bring the book
to his current therapist to get her opinion. I am persistently hopeful to
find help for my son before the worst scenario sets in.
SUBJECT: Re: Social
Skills Date: 97-03-31 10:33:41 EDT
From: CHSMom
Lookheart - my experience with social skills groups is similar to yours. They are like any other "support" group - a group of people in need of the same thing. So, yes, all the children in the group are lacking in social skills and are supposed to learn together. I'm not sure how effective they are for our kids because the information doesn't seem to "stick", it doesn't generalize to outside the group. I assume it has to do with their inability to understand cause and effect, and poor short/long term memory. Years ago I took my son to a group at UCLA. If you live near a large university, you may want to check with them. Good luck.
Thanks again for the article!AOL looking for a response
SUBJECT: Re:Would love
your opionion Date: 97-03-31 12:18:09 EDT
From: SuZQ0321
CHSMom: you wrote: >>>SuZQ0321 - I am excited to learn you are in California.
May I be so bold as to ask what part? I am in Southern California.<<<
I am in northern California. I do travel for inservice training. e-mail me
(if you can). I may be in Costa Mesa presenting at the LDA-CA conference in
October (if I'd get my act together and send in the required material). I
presented last year in Sacramento. Also, I have submitted a proposal to the
Association of Occupational Therpaists to present at their confernence next
fall in Palm Springs. As far as school districts . . . if they pay my way, I
Individuals with NLD generally do not visualize. This is one of the hallmarks of the disorder. It is much more difficult to hold onto a series of words, especially while you are listening to someone else talk, than to keep a little picture or a keyword stored in your mind for future use.
Because this individual does not visualize, he/she often feels the need to
"blurt out" or risk that his/her thought (in its present form) will be
forever lost! Specific rules are necessary. (i.e. "in a life or death
emergency, interrupt the person who is talking" and "when your thought is
important (but not urgent), try to keep repeating it in your head until the
other person has finished"). Language pragmatics (the give and take of
normal conversation) are elusive to the individual w/NLD. Specific training
in this area is also recommended. In the mean time, recognize that this is a
disability, not an inappropriate behavior!
SUBJECT: Re:Keyboarding and the rest Date: 97-03-31 12:40:33 EDT
From: SuZQ0321
>>> SuZQ0321 where are you? I've appreciated your info as well as others
here.<<<
Hi! I'm in northern California. I do get to southern Cal. occasionally for a
conference or inservice training (see previous post). Would love to meet
you. : -)
SUBJECT: Re: communication Date: 97-03-31 12:43:12 EDT
From: SuZQ0321
>>>That's why I think Sue wrote the title, "I Shouldn't Have To Tell You..."
These kids love explanations and they want to hear the little things that we
usually leave out in the sentence.<<<
Yes! Yes! Yes!
SUBJECT: Re:Keyboarding and the rest Date: 97-03-31 16:27:40 EDT
From: Grace2al
SuZ just sent for the book. Am planning on attending the sympos. please let me know if the LDA conference flies in Oct. also the one in Palm Springs. Will talk about inservice and requirements w/ school. I'll E-mail you with address and all. Did put the aol name on my order just incase there is a cross reference.
Never thought of asking my son if he saw words or pic.s From what he
said it's words. Beginning to understand that certain behaviors were not
attention seeking. Great example when he interrupts us and we tell him to
hold that thought less then a minute later it's his turn and he forgot. with
writing this year they have switched over completely to cursive. It has
helped to speed it up, more fluid? He has always had beautiful writing it's
just such a laborious task. Typing is up to 11 words a minute:( but it's
getting there. To anyone here for the first time if you have a ? trust your
You wrote: >>>The last thing is even when I do take the trouble of going
through a long explanation of what "appropriate behavior" is in detail and he
repeats it back to me, he goes ahead and does the inappropriate stuff
anyway.<<<
Individuals w/NLD have difficulty generalizing and adapting. Try to make
your explanations concise (as opposed to long) and relevant to the current
situation. Just because a child can parrot back your words, does not mean
he/she understands what you are saying. These children are like little
tape recorders - - they can replay your words verbatim, with little or no
understanding of the meaning of these words. Also, try numbered steps. The
NLD individual uses the left-brain to think logically and sequentially. Keep
it it - - you're on the right track!!!!
SUBJECT: Re:Would love your opionion Date: 97-03-31 17:19:39 EDT
From: SuZQ0321
>>>What does it take to get a visit from Sue Thompson to MA<<<
Eagle Hill school in Hardwick, MA uses and recommends "I Shouldn't Have To Tell You!" and has had Byron Rourke out to do workshops. Richard Lavoie has also endorsed this book. And, a medical college in MA is reviewing it.
Could be a visit from Sue Thompson may follow???? Ask Peter McDonald at
Eagle Hill (413) 477-6087. :-)
SUBJECT: Re:Children under 5yrs of ag Date: 97-03-31 17:38:08 EDT
From: SuZQ0321
You wrote:>>>Does anyone have information on NLD or Asbrger's in children
under 5yrs old or younger. I'm interested in how these syndromes may present
differently in children this young as opposed to school age children.<<<
Usually motor concerns come first. Visual-spatial and social concerns are "grown into." This child may appear prodigious because of early talking and reading. From "I Shouldn't Have To Tell You!":
0-2 years
1.) does not explore the world motorically.
2.) speech and language usually develop early.
3.) wants a verbal label for everything.
4.) no strong evidence of developmental delay.
5.) early attempts at walking - appears drunk.
6.) difficulty w/balance.
7.) clings to objects or persons.
8.) constantly bumps into things (especially on the left side.
3-5 years
1. remarkable rote memory.
2. "speaks like an adul.t"
3. reading skills develop early.
4. sees everything as "black or white."
5. poor gross motor development.
6. difficulty riding a trike.
7. fear of heights.
8. simple athletic skills not mastered.
9. not drawn to building/construction toys.
10. resists eating w/silverware.
11. difficulty learning to dress.
12. difficulty adjusting to transitions.
13. difficulty adjusting to pre-school.
14. often considered "gifted."
15. avoids spontaneous social interactions.
16. may "overfocus" on tasks.
SUBJECT: Re:Would love your opionion Date: 97-03-31 19:22:28 EDT
From: Lookheart
>>>Eagle Hill School<<<
SuZQ0321 - Interesting you should mention that school, I found it on the Internet earlier today and saw there is a summer program and sent a brief message e-mail to them, now that I have a number I will follow up tomorrow. Thanks, if you want, send me e-mail to let me know the college in Boston and I will inquire there also.
SUBJECT: Re: Social Skills Date: 97-03-31 19:30:41 EDT
From: Lookheart
CHSMom: I did try to look through some colleges on the Internet today but
not much success. When I told my advocate about the book by Sue Thompson,
she said she will order it for herself. I told another therapist whom I was
inquiring about groups for NLD kids about the book and she said she would
look into it. She suggested I look into a program "I Can Problem Solve" by
Research Press, in Champagne, IL, which she recommended to a school
psychologist to use in the classroom which I will look into also. I also
plan to show the book to my son's psychologist tomorrow and I am sure she
will be excited about it because she has other NLD kids and frustrated NLD
parents. I'm not sure how to introduce this book to my son's school but I'm
sure my advocate and son's psychologist will advise me. This will be so
helpful to the parents here in MA. So...the word's getting out around
here.
SUBJECT: bittersweet Date: 97-03-31 19:51:48 EDT
From: Grace2al
As we all seem to go a ha over and over I get the feeling that we are at the beginning of a paridigm shift in viewing LD and performance iq. What makes it bittersweet is that for most of us we did the searching and stumbled upon the results. With my clients(psychotherapist) I always advocate testing. As was said earlier, it's our concerns that lead us to neuro-psych.s and ped. psych.s, testing and clarity only limit our grasping at straws. I with the help of our physican r/o ADHD after an extremely odd week with my son, ritalin can be very helpful with adhd but with T he only ended up speeded up and still confused. I just printed up the symptom list of previous mess. It's T's life story. I've sent for the book and want to read it now. Getting back to the viq vs. piq is important!!!. T always said i know other kids that don't know as much can do more. It was his emotional development that took a beating but we've worked with it. My Husband. is also a clear example but of course in the 60's he was dx.d as add, and med.s didn't phase him. When he went back to school only after alot of encouragement, his algebra courses he took at a jr.coll. as they have SELF PACED. It is the only way he would of made it. Having a positive supportive role modal in my husband has been and continues to be a gift and the best therapy for his adjustment. Hopefully in another couple of days I'll be done airing my story and will have acclamaited to having arrived.
I found the www site for the alphapro look up LDresources then writing help.
or just put in the name they have their own web site. Yes schools get a
I constantly see things that answer why to many of my son's behaviors in Sue Thompson's book. Everyone always said he is so trusting and open with other adults as he grew up to the ripe old age of 7 and we thought with time and repetition he will grow out of it, but is what he says just parroting back what we say and again I still do not know when he really believes something. He treats us, my husband and I like we are his equals, never has yet realized we are here to help and teach him, but always complains we are smarter than him. Through logic and rationalization I have tried to explain many things to him. Maybe some of them are sinking in, I don't know, but I did yesterday send a warning note to his school, not to let him be in situations where he will be teased by other children and that they will notice that he appears very "smart" because of his rote memory and other left hemisphere skills.
Hopefully, eventually, they will stop treating me as a meddlesome parent who
is "overprotective" of her child and will see he is someone who truly needs
help now.
SUBJECT: Re: Social Skills Date: 97-04-01 10:55:58 EDT
From: SuZQ0321
>>>-I live in MA, a little behind CA as I read in terms of specifics
concerning IEP-<<<
Don't be jealous of California! Parents are pulling their hair out here,
too. I have made it my personal mission to improve the conditions that
children with NLD suffer in our schools. We've always thought you were so far
ahead of us on the East Coast. You were servicing NLD long before our
If someone out there has it or knows of the journal/reference I would love to have it. tx.
Also with the accomadations that are going to be done in class for T should I even persue GATE it only meets 2x's aweek before school. Any feed back would be helpful, also since his main two prob.s are SLOW processing speed and visual/spatial organization would that rule him out. And more importantly does it matter. I know that in Carlsbad, S D county, you can't be both gifted/ld. because of his scores he doesn't fit LD exactly.
Want to give some feedback on the last three posts. To Grace2al - Lookheart was wonderful enough to fax me a copy of the Frankenberger piece and it is just WONDERFUL. Every single characteristic is my son!! Although it is too soon to know how much of an effect the article will have on the school's receptive, I feel it legitimizes what I have been trying to explain for years (my son is 15), and it explains it much better than I was ever able to. If Lookheart can't get the article to you, let me know - I retyped it because it came through rather fuzzy and I would be happy to fax/mail it to you. email me. Also, I don't think the district can say they don't recognize Gifted/LD. They are actually two different categories, with different criteria. Most districts don't want to deal with it, and many don't understand that a child can be gifted in some areas and LD in others (I did a paper on it and it was very interesting. Let me know if you want any articles).
One thing to consider re putting your son in the gifted program - will it put too much pressure on him?
SuZQ0321 - I don't think the rest of the nation realizes how bad the educational system is here in California. I think we rank 49 in the country. My major frustration right now is that students in fourth and fifth grade are getting the short end of the stick. Not only did they get Whole Language for four years, they weren't included in the class reduction (California reduced class size to 20 students in K-3). Not only that, I can't see where anything is being done to make up for all those years in Whole Language. It seems those two grades will remain in a wasteland.
Lookheart - Well said!!! I think we are all tired of being though of as meddlesome and overprotective! you can have social skill interventions written into his IEP. For example, when my son was younger he too alienated classmates because he "knew so much". We had it put in the IEP that the teacher would not call on him first (not sure exactly how we worded it), but the jist was that the teacher wasn't to let him answer all the questions, and we had a reward system for not calling out (waiting until he was called on), to meet his need to share his knowledge, he tutored either a younger student or someone in his class who needed help. He was also allowed to stay inside for recess, which was sheer panic-time for him.
sorry this is so long - good luck to all!!!
SUBJECT: I Shouldn't Have to Tell
You Date: 97-04-01 22:55:24 EDT
From: E503
I brought "I Shouldn't Have to Tell You" to Molly's IEP last week and her teacher loved the book!
She is going to order it for the school library. Molly is not a "typical" NLD child - she has difficulty reading and is excellent in math! Socially so far so good. She is getting OT 2 times a week for total of 1 hour and ELS (Exceptional Learning Styles) classroom minimum of 1 hour a week for written expression. I'm so glad I had this book before I went into her IEP!
elise
SUBJECT: Re:NLD chat Date: 97-04-02 02:17:23 EDT
From: Caitlin35
On April 15, I'm going to do a chat on the homeschooling forum called
Parenting the Absent Minded Professor which will focus on helping the child
with NLD behavior-dysgraphia, social skills problems, overuse of language,
etc. I'll let you know more when I do, but I think it will be in the
evening...would love to have company and meet you in the discussion. Perhaps
we can set up a NLD support chat sometime soon!
SUBJECT: Re:NLD chat Date: 97-04-02 02:45:57 EDT
From: CHSMom
That sounds very exciting! However, being on the West Coast, the chats I've
found on other boards are always too early. If they are from 6 - 9 EST, I am
barely home by the time they're over. I hope us Westerners will be taken into
account when the time of your chat is planned. Keep us apprised of the
details!
SUBJECT: Re: Social Skills & Frankenb Date: 97-04-02 08:23:41 EDT
From: Lookheart
SuZQ0321-Thanks for giving me a bigger perspective on things. CHSMom-you are
great for my ego, that article was a poor copy from the beginning, so sounds
like you have the better copy now and are in charge. If I do find ever find
In an attempt to see the lighter side of all this, and hopefully put a smile
on some faces, I want to share something that happened with my 15 year old
(9th grade) son. He (we?) is having trouble finding information for a
history report, so I took him to my college library. We found several
reference-type books (can't be checked out) that each had about a paragraph
or two. Of course he couldn't take notes and write down any of the information, so I told him to put pieces of paper in to same the place and if there weren't too many pages, I would copy them for him. He came up with 11 pages. I asked if we could eliminate some, wasn't the info repeated at all?
He said, "I don't know, I didn't read them. You only told me to put the
pieces of paper in the pages, you never told me I had to read them." The
"old" me would have gotten exasberated and berated him. The "new" me just
broke into laughter - "You're right, I never told you to read it." Hope some
of you find this familar, and see the humor in it - it's better than
Would love to take part. Ever since my son converted the upstairs bathroom into a lab in Kindergarten he's now in third,we've called him the Absent minded professor, others not so loving have said it also. Going over test results, and looking forward to continued ideas and insights. His biggest two problems are 1)minimal short-term mem/recall 2) slow processing. We just played Aggravation and when he had lots of time to go over the board several times he really enjoyed himself and he won. It is a blessing that we only have the one as we can take the time. To CHSMom I'm back in grad school also so take your time with the article, even just the reference will do and I can look it up.
KevisB-Thanks for the Yale resource, also thanks for the insight into age and keyboarding, my first thought is the school is being noncompliant, I just wish I knew how to communicate with them. There are a lot of them, ie S/L therapist, OT, PT, team leader, spec ed teacher, regular classroom teacher, spec ed aide, reg. classroom aide and social worker. The only one who acts as if I am a human being is the social worker.
Also I only have one, but do get tired of being his constant playmate,
especially being home with all this snow for 2 days!! He loves to play the
game Sorry, but gets upset and frustrated when I get a good card and he
doesn't, with all the coaching I have tried, I wonder, will he ever see the
big picture? I guess it's back to the drawing board, oh yes, steps, maybe
that will help; maybe he will change if I do.
SUBJECT: Re:Would love your
opionion Date: 97-04-02 15:49:34 EDT
From: Siwel55
Go to the district office with a copy of "I Shouldn't Have To Tell You" and
begin to educate the administrators about the problem. They will be
interested in knowing where to reach her for inservice and may be able to put
CHSMom - Oh so familiar: ) They really do live in a literal world. I spend
my life trying to anticipate how my daughter is going to interpret what I say! And yes, laughter is much better. Unfortunately, we have to be careful with the humor too - if we're not careful, she thinks we are laughing at her!
And the beat goes on...
SUBJECT: Re:NLD chat Date: 97-04-02 16:40:29 EDT
From: PBTanguay
Caitlin - Wonderful idea! Just let us know the time and place (and maybe how to get there since I've never participated in a "chat" before). Thanks.
SUBJECT:
Re: online chat Date: 97-04-03 07:17:22 EDT
From: Lookheart
Interested too, that is funny about the bathroom, sounds so
familiar...sometimes my son can't remember things, but when it is something
he is interested in he can always remember. He'll never forget a promise
myself or my husband makes to do something with him. He is taking karate and
does very well, remembers more moves than I probably could. There are times
when he forgets things, but not having a great memory myself, I never really
associated it with his diagnosis.
SUBJECT: Re:Would love your opionion Date: 97-04-03 08:41:00 EDT
From: Lookheart
Checked out Yale University on the web but unable to find anything. Did
leave a message there to let me know about such research by Amy Kline. Am
not sure I was looking in the right place. Any suggestions as to how to find
it?
SUBJECT: Re:Would love your opionion Date: 97-04-03 13:30:16 EDT
From: SuZQ0321
<<Checked out Yale University on the web but unable to find anything. Did
leave a message there to let me know about such research by Amy Kline.>>
That website has been down for about two months. The researcher's name is Ami (Ah-mee) Klin. I met him in Chicago last February at the LDA national conference. Check out the LDA website for info. on the Social Learning Disabilities study. It's being conducted by LDA and Yale. However, they have rejected many NLD students because the "social" aspect of their disability is not as pronounced as in HFA or Asperger's. I spoke w/Dr. Klin about NLD and this is an area of interest for him. He has his own copy of "I Shouldn't Have To Tell You!" Also, Byron Rourke is involved w/the study. You can print out the survey and e-mail it back to them, if you are interested in participating. Connect from the LDA website. Hope this helps.
:-)
SUBJECT: Re:Would love your opionion Date: 97-04-03 14:20:04 EDT
From: KevisB
By the way, I did manage to get the internet page on the Yale study today.
The address is http://info.med.yale.edu/chldsty/autism/asperger-basic.html.
The address of LDA is, I believe, www.ldanatl.org.
If you haven't been faxed a copy yet, just to let you know I am still trying
to research the reference.
SUBJECT: To Sue Thompson Date: 97-04-03 19:09:14 EDT
From: ShelleyHL
Our educational team was given part three of an article you wrote on NLD. It was in a publication called GRAM (I think). The part that we received discussed programming for the students. Our team would also like to see and read the first two parts of the article. Where can we get these parts?
Please post here or you can email me directly at ShelleyHL
SUBJECT:
Re: AlphaSmart Pro Date: 97-04-03 22:15:57 EDT
From: Grace2al
We just received the unit today. My son is in love. He sat in the car typing sentances. He's still pretty slow but certain words are becoming faster. FYI you can request a demo fo two weeks. That's what this is. not as complicated as it first looked, to transfer to computer. The cable just looks funny. I'm going to the NLD conference in Walnut Creek other then those presenting( I can't wait to see you in person) Is there anyone else?
T does better with the Alpha as there is less to do. Everytime I try to get him to do the computer he gets ahead of himself with the buttons and stuff. This is only day one the saga will continue. I know this is not the answer to everything but it's a great start.
How do I ask,explain that they need to quit the timed math/writing test
if they want to know what he has really comprehended. Does the school need
to include this in the IEP, Does he need a label or can these accomadations
be done without one. I know that when they did start typing as part of the
IEP he didn't have a dx. yet. I would prefer not to get into all of that at
once. I've put alot of ?.s out there always appreciate input and others
experiences. Oh yeah I'm using the Alpha to type this.
SUBJECT: Re:AlphaSmart
Pro Date: 97-04-03 22:38:10 EDT
From: Mars000210
Hello, it is a great little gadget isn't it . My two girls love theirs. They
use for all their classes and tests. The company also has a program that
allows the user to transfer material from your computer back to the
alphaSmart Pro.
SUBJECT: Re:AlphaSmart Pro Date: 97-04-04 00:32:47 EDT
From: Ratatat
<How do I ask,explain that they need to quit the timed math/writing test if
they want to know what he has really comprehended.>
You explain that it's not how fast he knows it, but whether he knows it.
There are several measures available, each with it's own aspect of usefulness and weakness.
In some instances, the Test of Language Competence - Extended, can be helpful, athough there certainly have been children with impaired pragmatics who do reasonably well on the measure.
It has the benefit of being able to tap receptive and expressive dimensions of a child's ability to decode and generate inferences from higher order or ambiguous language concepts. Hence I tende to use it with the notion that if it sheds helpful information, I am fortunate.
PeterCB55
SUBJECT: Re:AlphaSmart Pro Date: 97-04-05 02:46:21 EDT
From: CHSMom
Glad the AlphaSmart Pro is working so well! I'm jealous - I "requested" one for my son at his IEP last week. I wonder how long it will take them to get him one. We start Spring Break, so that's another delay.
Digressing - how long does it take to receive Sue Thompson's book? It
probably hasn't been as long as it feels since I ordered it - I'm just
excited to read it.
SUBJECT: Yale Web Page Date: 97-04-05 06:34:04 EDT
From: BKirby914
For those of you looking for the Yale Web page - it's back up and running.
You can access it from the OASIS web page
http://www.udel.edu/bkirby/asperger/ I have it listed in several places -
sorry I don't have their URL handy..
SUBJECT: Re:AlphaSmart Pro Date: 97-04-05 08:16:53 EDT
From: Lookheart
CHS Mom-it only took a week for me to receive the book.
SUBJECT: Social Skills Date: 97-04-05 08:21:26 EDT
From: Lookheart
What works? Does repetition work, telling a child not to do something over
and over again or will it never generalize to novel situations and in such a
situation do I or teachers always have to be hypervigilant? My son in
unstructured situations such as playing soccer at recess or playing
basketball gets overexcited and does things like throwing snow or bumping
into people for no reason and we are told by the school all he needs is
repetition, "just like all other kids". We know this does not work at home,
but does anyone know what does?
SUBJECT: Re:Would love your opionion Date: 97-04-05 08:39:56 EDT
From: Lookheart
Searched with your address but couldn't find it, when I made the change from
chldsty to chldstdy found it for those others interested.
SUBJECT: Re:nonverbal
pragmatics Date: 97-04-05 09:48:40 EDT
From: ShelleyHL
Thank you to those who have responded thus far to my inquiry about nonverbal
pragmatics. Let me be a bit more specific re: what the family is asking I
measure. They say their child doesn't understand facial expressions, body
language, vocal inflection, gesture. I told them that I could do an
observational assessment (cursory) which would indicate what is happening at
school. They would like a formal measure. This is particularly important to
them because the problems they are noting at home do not seem apparent to the
school personnel at this time. They were hoping that a standardized measure
would indicate the presence of or lack of a problem. Any further input from
you all out there would be greatly appreciated. ShelleyHL
SUBJECT: Disorder vs
Disability Date: 97-04-05 09:55:27 EDT
From: ShelleyHL
Is there a distinction, and if so what is it, between nonverbal learning DISORDER and nonverbal learning DISABILITY.
Also, we are looking for the precise name of Byron Rourke's book and the
ISPN, if possible. ShelleyHL
SUBJECT: Re:AlphaSmart Pro Date: 97-04-05 10:58:05 EDT
From: Grace2al
As we by passed the IEP it's worked for us. My son has been on spring break this week, so when we got the demo from the company on tues/wed. he has been practicing and will go to school monday with it in tow. We did have an IEP done two years ago which entitles us to a yearly review I will be requesting this on Monday. Also I sent for the book on Tues. and was told that it should be here by the 11th. as the ? arose would it be quicker to just buy it at the conference or not.
My reasons for not including the purchase of the Alpha thru the IEP were two fold. First he has already been sitting down at spontanious moments to "write" something down and I want him to have continual access. Second although we are not rich (i'm in grad. sch. and Hus. just finished) I've seen the politics of school life and am aware of the defensiveness we will becoming in not asking to buy or overadjust but to make some changes. My son has been in the typing class for a year,( when they remind him to go), so the transition to Alpha is not a surprise. Thank God for VISA Gold!! FYI I've opened up a NLD board on Christianity Online, with a note to find valuable resources here, hopefully this will just get the word out more and gain some more support.
As confident as this appears as I read it, my dreams have been plagued with IEP meetings, my own neurosis I guess. This board is great I now check in each day and will continue to do so. Can't wait for the Conference. :()
"There are several measures available, each with it's own aspect of usefulness and weakness.
In some instances, the Test of Language Competence - Extended, can be helpful, athough there certainly have been children with impaired pragmatics who do reasonably well on the measure. "
Peter she's looking for measures of non-verbal pragmatics-I'm guessing
that would be use and interpretation of body language?
"What works? Does repetition work, telling a child not to do something over and over again or will it never generalize to novel situations and in such a situation do I or teachers always have to be hypervigilant?"
Looks like I'll be going too. Hope to meet you there.
SUBJECT: Re:To Sue
Thompson Date: 97-04-05 12:49:16 EDT
From: SuZQ0321
From Spring 1997 GRAM: "Sue Thompson's three-part article, "Nonverbal Learning Disorders" appeared in the fall and winter editions of The Gram. Reprints of the article have been very much in demand. To receive a copy of Sue's article, please mail a note requesting the article, a donation of $1.00 [to LDA-CA] (to cover copying expense), and a self-addressed number 10-size envelope to LDA-CA, 851 Burlway Road, Suite 716, Burlingame, CA 94010."
Also- if you can wait - it will be available for downloading at the NLD Line
website (coming soon). Barb Kirby has offered to put it on her Asperger's
(OASIS) website, too. I just have to get it to her. Too much to do. Hope
Sounds like what some of us call social skills. Frankenberger says it well-"difficulty understanding cause & effect relationship, failing to comprehend the subtleties and nuances of the language." You may need to approach this from a different direction. Instead of testing language (I'm not familar with a standaardized language test in this area, but am interested if youever find one), how about testing adaptaive functioning, or I believe some behavior rating scales might inclue this. Can't think of names, but I will look them up and see if I can find one.
Lookheart - no repetition does not help, nor have I found social skills classes helpful. They seem unable to generalize this information. The only thing that has helped my son is growing up and entering high school.
Although, his swim coach told me he still asks kids "do you like me?" You
are coming all the way to California for the conference?! Wow, lucky. Would
appreciate it if you could tell me the details, when it is, how much it
costs, etc. or where I can get the info. Thanks.
SUBJECT: Re:To Sue
Thompson Date: 97-04-05 14:32:52 EDT
From: ShelleyHL
Thank you for the quick reply about the article parts I was looking for. I
will mail my request and $ on Monday. ShelleyHL
SUBJECT: Re:nonverbal
pragmatics/CHSMom Date: 97-04-05 14:36:35 EDT
From: ShelleyHL
Tahnk you for your suggestions. We have already done the social skills checklists at school and they do not indicate a problem. The parents indicate there is a significant problem at home which we can't seem to corroborate at school. Examples: child doesn't ask for things, he screams.
This is a very verbal, competent child at school who never tantrums. He is
not nonverbal. His parents feel that he doesn't understand body language,
inflection, facial expression, etc. I am having trouble supporting that and
they were hoping a standard measure was available that could quantify the
significance of their child's problems. ShelleyHL
SUBJECT: Re:nonverbal
pragmatics Date: 97-04-05 17:20:42 EDT
From: PeterCB55
Gosh, I am sorry, I misdirected my focus and did not catch the "nonverbal" portion of the message. A colleague at the University of Minnesota had been working on a measure of nonverbal pragmatics that has been used on several samples of children. It is a battery that assesses the ability to interpret emotional inflections accurately, facial gesturing and the fit between the two and so on. The measure is not in wide distribution outside of research settings. Please email me directly if you wish to pursue it further. Otherwise observations either in the settings in which the behavior of interest is occuring or with individuals who can create the types of problematic interactions your family is concerned about may have more to offer you. I would however caution you and the family not to "overrely" on the value of "formal" measures over observational ones. First there are few if any measures available to the best of my understanding and carefull observations are likely to have more ecological validity, especially if the behaviors of interest can be captured in more realistic settings , and reliably validated as a source of difficulty across several observers. However, it is not at all uncommon for odd or distinctive pragmatic "slippage" to be more evident within the home where a child is more relaxed and less likely to be as vigilant as they would be in a strange social situation.
A couple of thoughts if you go the observational route. Have the family specify the types of miscuings that occur and see if you can identify parrallel types that arise within the school. If they are simply so distinctive (i.e., of a type that only occur within the context of intimate family members) you may need to consider a home visit or ask them to collect audio or videotape segments or interview other family members. If the pragamatic difficulties occur in more generic social situations with a little patience you might be able to catch a few as they occur in school (e.g., the hallway, the lunchroom, or entering and exiting from school iteslf). In the past I have (with parents permission) also explored verbal and nonverbal pragmatics using envivo situations in and around the clinic I work at. We have taken children to purchase something from a nearby McD's, asked them to return "forgotten" items to the secretary down the hall, played a "pretend" game with their parents (i.e., around the issue of giving or receiving discrepant feedback), and in a number of instances had family's bring lunch into the clinic in an observation room where we can watch them eat a meal, perform unstructured play activities as well as structured one's designed to mimic teaching, limit setting, cooperation building or conflict resolution. I hope this is encouraging to you. I understand these can be compelling issues, but hard to capture. Finally, if the pragmatic problems occur within the home, but not at school, to what extent does that imply you could/should pursue the question of it's presence as a factor in a child's learning at school? I don't have an answer here, just a question.
In California, we have what's called a behavioral assessment, and if warranted, a behavioral assessment intervention plan added to the IEP (the process of getting one is not as straight forward as it sounds, but..). The philosophy behind this approach is that all behavior is a form of communication, and the child is using that form of communication to get a particular need met - Sensory, emotional, attention, tangent (wants something). Once we know what need they are trying to get met, and what their primary form of communication is, we can help them get that need met in a more socially acceptable manner. There is a whole packet of assessments that must be done - it does not rely on just one tool, it is important to discovery patterns. Sounds like this might help the parents figure out why he is acting like that at home and not at school. I am not trying to imply that the problem is in the home - I had that thrown at me for years, it turned out home was a much safer place for my son to act out than school.
But it would at least provide some invaluable information. It is possible
for a parent to to do this, informally, for the home. Email me if you would
"However, it is not at all uncommon for odd or distinctive pragmatic "slippage" to be more evident within the home where a child is more relaxed and less likely to be as vigilant as they would be in a strange social situation."
Yes. In addition school is more structured, and the types of interactions required tend to repeat themselves.
Also a child can be very stressed throughout the day, hold it together until he gets home, and then fall apart, over-react, etc. in the emotionally-safer environment of the home.
Bottom line here, though (with this added information) is something the parents won't welcome.
If the problem truly doesn't exist at school, the school is not required to
Thanks for the info. I'll have to pass this time - my Thesis Project is due May 1! Hope to hear all about it on the board when all of you lucky gals get home.
When I read what they said about your son being so smart, I got this knot in
my chest. He's 7, right? Second grade? That was the scenario with my 15
year old. Because he was so incredibly verbal, and could outshine adults,
everyone told him how smart he was. His second grade teacher even told him
he was the brightest child she ever had!! I'm not trying to say he wasn't
smart, but I guess he knew even then that there were things he could not do
at all. Also, (because of the OCD we discovered later), he had to be
perfect, or at least not shatter anyone's image of him, he couldn't let
anyone done. That's a tremendous burden to bear. I think it goes back to
the fact that most of are kids ARE very verbal, and people don't see past
that. I know it has hampered my son getting the appropriate
services/interventions all these years. Now that I've found all of you, I
finally know how to explain him and what he needs. I'm not saying your son
isn't smart and wouldn't benefit from what sounds like a gifted program, I'm
just sharing my experience and waving a caution flag.
SUBJECT: Re:HELP I'm
stuck Date: 97-04-07 14:35:18 EDT
From: Grace2al
My son took his free two week trial Alphapro to school, shared why he was going to use it and everyone thought that it was cool. Then the teacher ?'d how is this different from a Dream Writer? I went in the computer lab and saw them but didn't take it out of the cupboard. We're still going to buy it ourselves but was wondering if this might be better. The principal agrees that having the modifications in an IEP would be useful, so the meeting is next week and everyone except the LD person is happy. Oh,well.
SUBJECT:
Help,I'm still STUCK:() Date: 97-04-08 23:32:12 EDT
From: Grace2al
While waiting for some feedback to my last note(hint, one before this) We had another round with the school. The school psych. said" that because of my son's high woodcock johnson scores along with the past iq scores that No, he would not qualify for an IEP, but.....She would be glad to do a 504. His slow processing speed, and poor short-tem memory and inability to retreive infor. on demand and his slow writing process are not an LD but accomadations for him can be made and documented". I just want a formal paper so as I do not have to remind every teacher for the next 3 yr.s. I'm going to the conference and Sue's book should be here this week. He is the poster child for the Absent minded professor. The chat on April 15, should be wonderful. The formal meeting to write up the 504 is next wed. and I'd appreciate any feedback that I can get.
thanks, a very frustrated mom!!
SUBJECT: Re:Help,I'm still STUCK:() Date: 97-04-09 01:55:40 EDT
From: CHSMom
Hi Grace2al: I can empathise. But don't be misled into thinking that the existence of an IEP means you don't have to remind the teachers every year.
You still do. Having an IEP doesn't mean they will read it, or "get it", or
do anything about it. There are other ways to qualify for an IEP than
Learning Disabled. And having a 504 is a good alternative if you can't get
an IEP. email me if you want more details, it's kind of long to put on the
board. (Hope this makes sense, I'm really tired). Take care.
SUBJECT: ADD vs
NLD Date: 97-04-09 02:39:24 EDT
From: JEBeaver
My first-grader has been diagnosed (by a psychologist) as having ADD, but much of what I read on this board sounds as though he is more NLD (what would we do without these acronyms?). His behavior definitely falls into the troublesome category in that he seems unable to read social clues. How do I determine whether it's ADD or NLD? What type of assessment is appropriate?
Thanks in advance to all of you-this board has been very helpful!
SUBJECT:
Re: ADD vs NLD Date: 97-04-09 06:25:57 EDT
From: Lookheart
Our 7-year old, then 5, was diagnosed with NLD by a neuropsychologist upon
referral by a neurologist. We had to go through our insurance company at
that time because he wasn't in the public school system yet. That was a big
fight, ie.with the insurance company but my son's neurologist appealed their
first decision not to pay. Then of course his team leader at the public
school said she put the report in a place where she files things that are not
important and his preschool teacher implied the problem was with my parenting
even though these were well-known and highly respected professionals so good
luck. Even though to this day this diagnosis is with him and he is in the
1st grade, I doubt his teachers have any understanding of it and feel because
he can read, write and do math at the 1st grade level he has no problem and
his social skills can be dealt with in the same way other children's social
skills are. We are going to develop an IEP based on Sue Thompson's book and
I've requested his team leader buy it and we are going to put in his IEP a
request that an inservice be done for the teachers he has next year. It
really is what they say, a long process.
SUBJECT: NLD research Date: 97-04-09 06:29:48 EDT
From: Lookheart
Does anyone know of any research being done in the Boston area? I would like to start a parent support group in this area but think I would be more successful if I had the backup of someone affiliated with a university.
SUBJECT:
Re: ADD vs NLD Date: 97-04-09 07:28:23 EDT
From: Lookheart
Correction to last message <read, write, and do math> should be read, spell
and do math. His writing has improved but he still has a lot of frouble with
it and prefers to eat with his fingers rather than use utensils. I use to
get on him about this at home until I read Sue Thompson's book and it dawned
on me that this is due to his problems with his hands. I've read a lot of
medical research on NLD but the most practical thing I've ever read is the
Help! Two Florida Sp.Ed. professionals desperately need information on 4/26/97 NLD symposium...We have funds and approval to attend, but no response from SHARE Support regarding cost or registration. This is needed in order to process our purchase order, which needs a two-week window, so we are really pushing it at this point. Any help would be greatly appreciated. Please e-mail us...we'll check back online today, and will supply a FAX number if someone can supply the information. Thanks. EMOBIL OR KDHSPEECH
SUBJECT: Re:Help,I'm still STUCK:() Date: 97-04-09 14:37:42 EDT
From: PBTanguay
Grace 2al - I support what CHSMom said about having it in writing doesn't automatically mean it will solve your problems. As our Head of Special Services once told me - "it isn't worth the paper it's written on if you have uncooperative teachers - on the other hand, a gifted teacher rarely needs something in writing to know what to do".
With that said, our daughter (age 12) had an IEP for several years, and in our situation it was worthless. Last year we switched over to a 504 Plan (at the school's suggestion) and it is working much better for everyone. In our case, it is a one-page itemization of our daughter's modifications. Minutes for our 504 Meetings are attached to the Plan, and it is revised as necessary, but we haven't needed to make changes to it yet. Examples of things in our plan are: pencil vs. pen, printing vs. cursive, reports dictated to Mom for word processing, teachers to sign-off on agenda book at end of each class, extra set of books at home, oral exams may be required, needs clear expectations, check for understanding, and so on. Also, due to her difficulty visually processing "novel" material, the school is providing books on tape for Social Studies and Science next year which will be kept at home. By the way, we also have permission for our daughter to highlight and/or underline in her text books for better understanding.
I found it to be awkward to incorporate these types of modifications in an IEP. However, when she was having difficulty learning to read in 1st grade, the IEP WAS helpful. There was a goal, a timeline, and a plan to address the problem.
I can't say whether an IEP or 504 Plan would be better for you. I guess it depends on the specific problems your child is coping with. But, again, having it in writing is no guarantee that you'll get the teachers' attention. I certainly wouldn't count on it. Late each spring we have a 504 Meeting with our daughter's next year's teachers. Both my husband and I attend, along with our neuro-psych. The neuro-psych gives a "thumbnail sketch" of NLD and we go over the Plan as well as the curriculum. Any potential problems (from our perspective or the teachers') are identified, and resolution is addressed (and documented in the minutes). Our daughter always meets her next teachers on the last day of school in June. We also get her schedule early in the summer and several times during the summer months, we go the school (my daughter and I) and walk her through her schedule. She meets her teachers again on the day before school starts just to "touch base". This isn't part of her official program, but has REALLY helped reduce her anxiety.
It has taken us six years to get to the point we are at now. It is working for us, but don't know if it would work for others. Hope this gives you some ideas. Please post again if you want more info. or e-mail me directly. Good luck - we're all pulling for you (and your child)!
P. S. CHSMom was right, it's kind of long, but thought it might help
others.
SUBJECT: Possible inservices SuZQ0321 Date: 97-04-09 15:03:00 EDT
From: Jandyross
Any possibility that you would be doing any inservices in Humboldt
SUBJECT: Re:ADD vs NLD Date: 97-04-09 22:50:54 EDT
From: SusanS29
NLD includes a specific pattern of learning that can be observed through psychological testing.
SUBJECT: Re:Help,I'm still STUCK:() Date: 97-04-09 22:52:17 EDT
From: SusanS29
"I support what CHSMom said about having it in writing doesn't automatically mean it will solve your problems. As our Head of Special Services once told me - "it isn't worth the paper it's written on if you have uncooperative teachers - on the other hand, a gifted teacher rarely needs something in writing to know what to do"."
That's only true if you aren't willing to pursue it. I know many parents who
successfully challenged uncooperative teachers, but the parents have to take
the bull by the horns.
SUBJECT: Re:how to advocate Date: 97-04-10 08:02:52 EDT
From: Lookheart
CHS Mom-I understand what you are saying except what is OCD?
I wonder sometimes how much the teachers really think about what is best for a child, some of them probably do, but I wonder if most probably spend more time thinking about their own jobs, where and what they will be doing, who they are dealing with? I'm sorry if I sound harsh, but I think I need a step by step process myself in how to "take the bull by the horns".
SUBJECT:
Re: Help,I'm still STUCK:() Date: 97-04-10 10:09:25 EDT
From: PBTanguay
<That's only true if aren't willing to pursue it. I know many parents who
successfully challenged uncooperative teachers, but the parents have to take
the bull by the horns.>
I think that most of the parents that participate in this BB do in fact challenge and "take the bull by the horns". They are actively involved in their child's learning and difficulties, and searching for the best solutions. However, the battle with uninformed and uncooperative teachers and school administrators gets exhausting. This is not a disability which schools seem to understand. Many of us parents are probably "paving the way" for others to follow. Our daughter is the ONLY child in our school system identified as NLD. After six years of battling (including having to remove her for part of 4th and 5th grade to a private school while we "slugged it out" with the public school), we finally have an appropriate program. BUT, that's because we got really tough with the school. We tried the "nice" way, the "firm" way, we assumed ALL expense for neuro-psych testing, and finally had to use legal means of resolution. We have finally been reimbursed for all of our out-of-pocket expenses and are receiving appropriate support for our daughter. Our daughter's school file has been "purged" of inappropriate reports and comments by school officials, but are kept on file with the school's attorney. The School Superintendent comes to all of our meetings, and our Case Worker is the Assistant Principal. The Principal is not allowed to attend our meetings (he was the original problem), and the prior school psychologist is no longer employed by the school system. In the meantime, we have been battered and bruised and my daughter's self-esteem has been damaged! We (and our daughter) are the talk of the school, and I can assure you, that most of it isn't positive! Yes parents should "take the bull by the horns", but it can be a daunting task. We are fortunate that we have the financial means to pay for the neuro-psych testing and private school tuition. In addition, my husband is an attorney so that we are spared some legal expense. I have personally tutored my daughter during the years of inappropriate support. However, not all parents are as fortunate, and don't have the same options.
When you know what needs to be done, and face a constant struggle to insure understanding and cooperation with your child's teachers, it can really wear you down. I have one child - many parents out there have multiple children, some with more than one disabled child. I can't imagine what life is like for them, but they have my heart felt understanding and support.
I'm really sorry if I offended anyone with my comments. This forum is
wonderful - since "Caitlin" told me about it, I read it every day. I hope
you will all forgive my "soap box" message.
SUBJECT: Re:not a soap
box just life Date: 97-04-10 11:36:58 EDT
From: Grace2al
I know that this won't be easy and I appreciate the situation. Knowing what
others have done is helpful!!
SUBJECT: Glad I found it Date: 97-04-10 11:54:16 EDT
From: Jandyross
Hi...I finallly found this area... I have a 16 year old son who is a
challenge (to say the least).. we have known for about 5 years about the
difference between his PIQ and his VIQ (35 points), but no one ever told us
how it would affect him other than that it would be very frustrating.. He
went to a small private elementary school and did OK.. I had the testing done
before he started at public middle school.. they chose to ignore the
information..didn't see a problem... we did... we put him in a private
school... High school has been hell... last year we asked for a special
student study session..(IEP)... they met with us once and then did not deal
with it... our son has terrible self esteem, has been in a lot of trouble,
drugs etc.. and we are about to start him in community school.. I am not a
dumb person.. but I see now that I should have fought for his rights....
although he really did not want to be singled out as having a problem...
people know he is smart and it works to his disadvantage because they then
expect a lot from him and when he can't produce they just think that he is
lazy.... any words of advice?..
SUBJECT: imagination Date: 97-04-10 16:51:32 EDT
From: Lookheart
My son's (age 7) psychologist says he has more imagination than other
children she has met. Does anyone know if this can be included in the
You wrote: <<<My son's (age 7) psychologist says he has more imagination than
other children she has met. Does anyone know if this can be included in the
syndrome.>>>
If current theory regarding white matter destruction being the contributing cause of NLD is correct, consider the fact that the corpus callosum is a large bundle of white matter, connecting the two cerebral hemispheres. Damage to the neural fibers of the corpus callosum prevents transfer of information between the hemispheres. Such an individual may be apt to have a very developed imagination (right hemisphere), because he/she is not doing a cross "reality check" with the left hemisphere. When he/she may run into problems is combining the two (i.e. being asked to"write a creative essay based on fact"). This may be an impossible task. Sound familiar? :-)
SUBJECT:
Re: Help,I'm still STUCK:() Date: 97-04-10 22:13:31 EDT
From: CHSMom
Thank you!!! It's not always easy/feasible to take the bull by the horns. My older son is in 9th grade. I have been pursuing this on my own since he was in second grade. The schools have NEVER volunteered any information, diagnosis, modifications, etc. They have all come from me (I have even written some of his IEPs which they have adopted!). I only know what I find out through my own research. I never heard of NLD until I found this board. And, there are other things going on in my life besides that child - work, another sped ed child, grad school, divorce, etc., etc. I can't sit at school for days on end and force these teachers to change their minds. His English teachers seem to be the most difficult, which I guess makes sense. The one he has now gives the impression that she doesn't like to have "these kids" in her classes. She insists that he has to tell her when he doesn't understand. I told her to just go on the assumption that he never understands. I can't force her to be responsive. And it is a time consuming process, and then school is over and we start all over the next year. You're lucky that you have a meeting with your daughters teachers the year before. The line I get in high school is "we don't know who his teachers will be". Oh, then if he does get an F, the teachers can't be forced to change the grade, by California State Law. Sorry about my soap box. I just get so frustrated. Also, just got back from spending 6 hours at UCLA answering questions re my boys for an ADHD Genetic Study, so I guess I'm pretty raw.
Sue Thompson's book (I got it yesterday) says NLD is a low incidence disability. I still don't know how a child/student gets the diagnosis. I know for "regular" LD, the school does it based on achievement vs aptitude.
Lookheart - sorry, OCD is Obsessive-compulsive Disorder.
SUBJECT: Re:Help,I'm still STUCK:() Date: 97-04-11 02:19:10 EDT
From: MGordon150
Today I was very fortunate in that my child's teacher had the school psychologist call me regarding my son's test results that we got back a few weeks ago. I asked him about the referral to Nonverbal Disabilities that the psychologist who tested my son alluded to. He told me that the diagnosis as he understood is based on two factors - visual processing and sequencing problems (as in math). He feels much of the talk about NVD is hypothetical (and not necessarily agreed upon) and that my son's testing based on average verbal and low performance does not constitute a diagnosis in NVD. He also suggested that based on his scores that being tested by a neuropsychologist would be in order, but that unless my son had problems with visual processing (which he doesn't) or sequencing (which he doesn't) then it probably isn't NVD. I think the best indicator of a NVD problem is definitely a neuropsychologist's evaluation. I'm also beginning to understand that there are so many ways this testing is interpreted!! I'm also going to have to resign myself to the fact that I may never be able to put a "name" to my son's difficulties!
I never received Thompson's book - I ordered it 4 weeks ago!
Martha
SUBJECT: Re:Help,I'm still STUCK:() Date: 97-04-11 07:34:27 EDT
From: Lookheart
CHS Mom-yes I am currently going through this teacher next year thing. When I asked his social worker about it at the school, her answer was, I don't even know where I'm going to be next year. Yesterday I was to have a meeting with her, rushed over there from work only to hear she had a crisis to deal with but it would be over in 15 minutes, I rushed out to do an errand, came back and she said sorry, she didn't think it would be over for a half an hour, rushed out again to do another errand, needed money, gas and food for supper, got back 5 minutes late to pick up my son and he had lost his jacket. Got sympathy. Told the principal my son is bringing stories home, she said all kids do they are looking for attention. Was told by the social worker she has to find out which budget they will use to buy Sue Thompson's book, meanwhile I loaned it to her so she could decide for herself if it is a good resource. It appears my input doesn't count, nor even his psychologist who called and told her it was a user-friendly book. Yes, there are so many things to deal with and I'm getting so tired of having to deal with the school's ignorance about NLD and trying to make them see they need to educate themselves that I lose energy to deal with my son at home. Of course your situation sounds even more difficult. Now I have to call the bus company because they have told my son to sit in the back of the van, said it was "his decision" and now I see they don't even wait for him to get his seatbelt on before they take off.
Suzq0321, thanks for the clarity on the imagination issue, can these children
<<<"reality check">> Suzq0321 I mentioned this in my previous message, but to elaborate, my son has one child at his school who represents all the "good" and one child who represents all the "bad". He and Timmy play 18 other kids in soccer and win and Dominic either pushes him and causes any cut or bruise he has or laughs at him or makes fun of him every day. I'm sure a lot of it is his perception, but how can it be straightened out either by me, his social worker at school or his psychologist?
SUBJECT: Re:Help,I'm still STUCK:() Date: 97-04-11 12:19:53 EDT
From: SuZQ0321
You wrote: <<<I never received Thompson's book - I ordered it 4 weeks ago!>>>
Please call Pediatric Building Blocks and let them know. It should not take so long. Find out if they recieved your check and what date the book was mailed out. All books are insured now, because some were lost in the mail, previously. That's the extra $0.75 tagged onto the price. Their # is (510) 866-1311. Or e-mail me w/your name and address and I'll check for you. Sorry about the wait. The book is about to go out of print, again, but I will be sure you get one out of the current batch. It takes awhile to get it re-printed, and the demand has been very high. :-)
SUBJECT: Re:Help,I'm still STUCK:() Date: 97-04-11 15:42:26 EDT
From: Lookheart
I finally convinced my son's social worker to buy the book...now on to bigger battles.
SUBJECT: Re: Just asking:) Date: 97-04-11 21:17:17 EDT
From: Grace2al
I just recieved "the book" and I know that I'll be finished by Sunday, hubby
and son are off camping with Indian Guides. Food for thought/grist for the
mill Because nld isn't even in the research sets of the DSM-IV, if a dx. had
to be done what would you go with the lessor of evils? The closest one I can
find is mild neurocognitive disorder, the only problem other then that it
isn't validated by a # is it expects a pre-morbid level of functioning. Worse
case scenerio LD nos or Cognitive nos I do not like labels yet when pushed
what would people choose. If you are unfamilar w/ DSM It is avaliable in the
reference section of your local library.
SUBJECT: New Book Date: 97-04-12 00:03:10 EDT
From: FedFunz
I have a son age 8 who is diagnosed with Aspergers or Non-verbal learning disability. He has performed well academically because the classroom wa so structured. In unstruceted situations like recess and gym he has a difficult time. His school has been very accomodative in helping him but he is the first in the school district to be diagnosed with Aspergers and they don't know what to do. Anyways I came across this book"Teaching Your Child the Language of Social Success" by Marshall P. Duke and Stephen Nowicki. These guys have developed a school based curriculum of Nonverbal language skills. They include individual and whole class approaches. The Publisher are Peachtree Publishers in Atlanta. Both Duke and Nowicki are at Emeroy University.
SUBJECT: Re: ??? Date: 97-04-12 01:06:23 EDT
From: Grace2al
Now that I've read or at least glimpsed through Sue Thompsons book I have more questions. Truely this is a syndrome/cluster of weaknessess. All the CAMS make sense. Of course all do not apply to all people yet a majority do. It seems to boil down to a philosophy of learning and playing to their strenghths. How to continually verbally que and question a nld student without drawing excess attention is confusing. The need to elecit responses in regards to comprehension is exactly what I do with him at home. At school they are glad that he got an answer within a day. 504 or IEP either way this seems so many minor yet continual cams that the teacher may get overwhelmed. In the 504 how specific does it get. Please give me examples. Please note that I have been copying most responses and all the e-mail.My son's BIGGEST problem is with visual/spatial organization and processing. I never thought about Geometry before with him manana,manana.
SUBJECT: Re: Just asking:) Date: 97-04-12 01:31:06 EDT
From: SuZQ0321
You wrote: <<< Worse case scenerio LD nos or Cognitive nos I do not like
labels yet when pushed what would people choose. >>>
Yes, right now the NOS (not otherwise specified) categories are most often utilized. Add, Developmental Disorder, NOS to LD and Cognitive Disorder. In severe cases, Asperger's is diagnosed. The Yale/LDA study (I just heard from another parent/professional) has now determined that Asperger's _is a Nonverbal Learning Disorder_ rather than a high-functioning autism, as was previously thought. I also see many reports which simply state: "this individual fits the diagnostic criteria of a nonverbal learning disorder/disability" without specifying a DSM IV diagnosis. It may be years in the future, when NLD is finally recognized. It took 30 years to get Asperger's included in the DSM. I heard a speaker who said; "DSM classifications are determined by a group of stuffy physicians in a hotel room in New York City." And I always ask people who dispute the existence of NLD "because it is not included in the DSM" if that then means that Asperger's didn't exist before it "made" the DSM IV (3 or 4 years ago)? For insurance companies, "mild neurologic disturbance" is usually excepted. A rose by any other name . . . :-)
SUBJECT: Re: ??? Date: 97-04-12 01:55:02 EDT
From: SuZQ0321
You wrote: <<< 504 or IEP either way this seems so many minor yet continual
cams that the teacher may get overwhelmed. In the 504 how specific does it
get. Please give me examples. >>>
Teacher inservice training needs to be a part of your child's plan. Concentrate on the CAMS which are most applicable to your child at this point in his schooling. Generally, the NLD child's IEP is much more detailed than an SLD student's IEP. I think someone on this board said it before, but I've heard many times: "a good teacher will instinctively modify her program to meet the needs of the child (IEP or not)." So, out target audience for the IEP is the less capable teachers. They need everything spelled out for them (sound familiar?). A few goals and objectives, and a lot of modifications and accommodations should be included. Don't be afraid of "overwhelming" his teacher, your child is overwhelmed every day of his life and he didn't even ask to go to school. The teacher is paid to do a job - - "teach." One cannot teach without being aware of your students' needs. A teacher should welcome any information which will help her students succeed. And I say this as someone who has taught in California public schools for over twenty-five years (with 33 students in a class). :-)
SUBJECT: Re: ??? Date: 97-04-12 10:48:19 EDT
From: Grace2al
Thanks, We have had wonderful teachers over the last 4 years. His teacher
that just left a week ago( teacher pregnancy syndrome happens every April)
was very accomadating and great with all of the children. His new teacher is
NEW and this is her first full-time class (oh bo!!). It's been great. She
wants to learn and I really,really,really you get the point, want to teach
her. She has already started to provide handouts instead of copying from the
overhead. My son said that there are about 6 of them that worked this way. To
my son's schools credit, they do complain and drag their feet but are
wonderful once you can get them in gear. Many of the things that will be in
the report are done for other students for other LD's. An inservice on NLD
must happen but will wait until Sept. I check in here everyday, it's more
interesting then my dissertation right now and moving along at a faster
speed!
SUBJECT: advocacy Date: 97-04-12 13:11:31 EDT
From: MSMitchell
As a special education teacher I've been pleased to see the amount of parental involvement related through the various messages on this board. I wish more parents participated as actively in their children's education. Still, I would ask that that the focus of your advocacy and brunt of your frustration not simply be directed at the teacher(s), but also extend to school districts, state, and federal governments. While I agree that there are uncooperative teachers in our educational system, often times available resources (time, money, etc...) do more to dictate the types of modifications we can make than the needs of the student. It's one thing for a teacher to petition the district for smaller class sizes (for example ... I average 21 in my LD classes), and quite another for parents to make those same demands. Unfortunately our requests for resources needed to appropriately service our students are often seen as self- serving, lazy, etc...
Until these kinds of changes can be made, I would encourage parents to continue to work with teachers. Not all of us are the enemy.
SUBJECT: Re:advocacy Date: 97-04-12 14:10:57 EDT
From: SuZQ0321
You wrote: <<<Still, I would ask that that the focus of your advocacy and
brunt of your frustration not simply be directed at the teacher(s), but also
extend to school districts, state, and federal governments.>>>
You're 100% right! I think everyone here understands that the only reason a child w/NLD survives at all in a school setting is because of the dedication of some wonderful teachers. Since most of the CAMS for a child w/NLD involve a slight paradigm shift and a little extra planning time, but no major outputs, expensewise, it is certainly disheartening to run into so many teachers w/a resistive attitude toward the child w/NLD. Inservice training should not just be for teachers, but for all of the staff involved w/the student. I have just recently been asked, along w/Caitlin35, to do an NLD Inservice for all of the Special Ed. directors of a local SELPA - - a step in the right direction!!! Parents are grateful for dedicated teachers, such as yourself, who spend their "spare" time (an oxymoron?) keeping up w/emerging research and information (such as this board). There is a group of parents in California who are trying to change state ed. codes to include specific language regarding NLD. Maybe, the federal government is next. Meanwhile, parents and their children are at the mercy of their children's teachers.
There are certainly those teachers who make no effort to comply. They are
the ones who must be made accountable for their actions - they are killing
our children!!!!! (their unprofessional attitudes have nothing to do
w/funds, supplies, mandates, etc.). :-(
P.S. Parents generally know the difference between a resistive teacher and
one who is jumping through hoops and not getting any back-up from his/her
district. The comments you refer to in your post were most likely directed at
the former, and assuredly not the latter. Keep up all your good work - and I
hope you have several aides in there w/you . . . :-)
SUBJECT: Re:advocacy Date: 97-04-12 14:28:06 EDT
From: PBTanguay
Re: the last two postings
If it weren't for dedicated and creative teachers, we would have given up by now (figuratively)! Our daughter currently has five regular teachers, plus her "specials" - art, p.e., etc. They are all extraordinary, except one who is out to prove that there is nothing wrong with this child - which she has openly stated! The entire team of teachers is frustrated with her, as is administration. This is a classic example of how tenure gets a bad name.
I would add that I think regular classroom teachers need some help understanding NLD, as so many of these kids are not in "spec. ed.", but rather in the regular classroom. Our daughter is in 6th grade and hasn't needed spec. ed. since 1st, however that's because some VERY CARING teachers not only accomodate according to her plan, but get creative as well. Her Social Studies and Science teachers are working with her in a one-on-one when they could well be in the teacher's lounge, or doing something else. The work they are doing with her is not in her plan, but in their hearts.
To all of those teachers out there working with our kids to make a
difference, we couldn't do it without you. But, to those that resist for the
sake of resisting, and hope their tenure protects them - I'd personally
appreciate it if you considered another profession!
SUBJECT: Re:advocacy Date: 97-04-12 14:54:52 EDT
From: SuZQ0321
You wrote: <<<To all of those teachers out there working with our kids to
make a difference, we couldn't do it without you. But, to those that resist
for the sake of resisting, and hope their tenure protects them - I'd
personally appreciate it if you considered another profession! >>>
I have noted frequently the similarities between Asperger Syndrome and NVLD.
I am perplexed by the possible shift in Asperger's from being part of the
Autism spectrum to Nonverbal Learning Disorder. For many families and
professionals, there has become an increased understanding of Asperger's as
part of the Autism spectrum, with its own defining characteristics. And
while the term "autistic" has been initially alarming to some families, most
have really rallied around their kids to provide and find proper educational,
social and communicative supports. If, as you say, a rose is a rose is a
rose...than why change the rules now? We need to concentrate on student
needs and do the best we can to NOT confuse the folks who are trying to
understand and work with the disabilities. ShelleyHL
SUBJECT: Re:NLD/Asperger's
Syndrome Date: 97-04-12 16:10:47 EDT
From: SuZQ0321
You wrote: <<<If, as you say, a rose is a rose is a rose...than why change
the rules now?>>>
Just passing on recent developments in the Yale/LDA study. I haven't even
seen the article myself, yet. But, I don't interpret this switch in
direction to mean that any rules are being changed. This is an effort to
better serve this population, by better understanding the etiology of the
disorder more fully. No harm intended, I'm sure. Within any syndrome, there
are numerous variations (just ask Caitlin35), but knowing the reasons behind
the various behaviors sure helps in developing educational plans for these
children. :-)
SUBJECT: Re:advocacy Date: 97-04-12 17:21:46 EDT
From: Lookheart
At this point everyone in my son's school are try to prove I am wrong even
with a diagnosis. My son had a wonderful special education teacher at a
private school he attended who really made the time and effort to understand
him and help me. I had such great confidence in her I didn't feel the need
to "be on her back". When I referred to her observations about him to his
current spec ed teacher, I was told "that was her observation in her
program". The teachers in the public school assured me when we changed him
that they would provide for his needs but now feel he has none, and when I
mentioned they were putting too much pressure on him because he was acting
out at home due to his anxiety, I was told by his spec ed teacher that that
is a medical issue and has documented nothing to help him with his
transitions although I am constantly being reassured that he is being looked
out for but the teachers don't have the time to document and when they do
they question how it will be interpreted. I know there are good teachers out
there but am upset with myself for believing in "lip service". I'm sorry to
have offended the good teachers out there, I just feel between a rock and a
hard place now.
SUBJECT: Re:advocacy Date: 97-04-12 18:38:45 EDT
From: MSMitchell
Thanks for the "pat on the back," although I feel I should clarify, that really wasn't the intent of my message. Although it may have appeared that way, I wasn't posting in defense of teachers. Only attempting to point out that acceptance of disabilities and the willingness to accommodate special needs is often a determination made outside of the classroom by "forces" beyond our control. Therefore, a battle waged with an apparently resistant teacher might be better fought with those who develop legislation or dictate funding. I struggle each day trying to find ways to help mainstream teachers (and myself) provide appropriate modifications given resource limitations (the most important of which is TIME), all the while agonizing over who is slipping through the cracks on any given day. My intent here was only to suggest that it would be worth spending the time/ energy to ensure that you are indeed addressing the root of the problem.
In addition, when dealing with resistant teachers, it may help to let them know you are understanding of their needs as well. Recognize that a modification which would take only a minute of time spent with your child is potentially multiplied by any number of students who also require individual attention, etc. Developing that sense of mutual understanding can go a long way in establishing a successful collaboration.
P.S. No, our district doesn't provide aides for SLD classrooms. Our school has 6 LD teachers, all of whom average 15- 20 students per class, 4 classes a day. During the course of the day, I serve 63 students with LD.
SUBJECT: with the 504................ Date: 97-04-12 19:18:08 EDT
From: Grace2al
First, after rereading my last post I want to clarify <my son has a new teacher oh Boy that was good not negative as the loss of the :y: might have suggested.
Once the 504 is done when/will we have an opportunity to revise it as needed once a year might be nice??. I also have seen wonderful teachers and have never dealt with certain ones, just made sure my son didn't have them. But remember others may like them. I think we(parents) at times view teachers from our nld's point of view. I can think of only 2 that no matter what my child would never have as they appear to have no passion for their careers. Now back to nld.
SUBJECT: Re:with the 504............. Date: 97-04-13 00:23:42 EDT
From: SuZQ0321
You wrote: <<< I also have seen wonderful teachers and have never dealt with
certain ones, just made sure my son didn't have them. But remember others may
like them. >>>
Good point. The rigid, inflexible, "here we do things my way" teacher that is every NLD child's nightmare, may be the perfect match for the AD/HD child seeking a more sturctured environment. But, the teacher lacking in compassion for her students needs to get out of the classroom!
P.S. I never take the time to re-read my posts, so you'll just have to
dechipher my typos. Thanks.
SUBJECT: Re:advocacy Date: 97-04-13 00:27:35 EDT
From: SuZQ0321
You wrote: <<< My intent here was only to suggest that it would be worth
spending the time/ energy to ensure that you are indeed addressing the root
of the problem. >>>
A quote for the day and then I'll retire: "Never doubt that a small group of
thoughtful, committed citizens can change the world: indeed, it's the only
thing that ever has." _Margaret Mead_
SUBJECT: Re:advocacy Date: 97-04-13 02:15:26 EDT
From: CHSMom
Bravo! I think that speaks for most of us. I would be interested in some information on the group of parents in California that you mentioned.
SUBJECT: Re:advocacy Date: 97-04-13 11:20:36 EDT
From: Grace2al
CHSMom I think we are the group:) have a great day to all
SUBJECT: Is this NVLD? Date: 97-04-13 12:14:36 EDT
From: LoMo4UBAH
My soon to be 6 yo son has shown great difficulty is fine motor skills. He is only able to write in all caps, and only if the letters are straight line (thank goodness his name is ALEX!) If asked to copy lower case letters, he attempts (totally illegible) several times then gives up in frustration. Writing is slow and painful. He does not hold his pencil the same way from attempt to attempt. He is bright, and reads beautifully. He is sweet and gets along with others well, but is socially immature. We went to a pediatric nuerologist, who noted finger agnosia (please explain further someone!!) visual-integration problems, and a host of similar terms. Our school is IMPOSSIBLE to work with...they say they will not test for LD because he is doing so well and written expression is not an element of conern until 3rd grade. He is not qualifying for OHI because despite a number of noted areas of concxern by the pediatric nuero., they say there is no specific medical diagnosis. His K teacher is exceptional, and as I am a former sped teacher myslef, and I am strongly looking into homeschooling him next year. However I still want to fight for his needs through the school system, mostly becasue he must qualify for a primary exceptionality in order to receive occupational therapy (I feel I can provide better educational services than the school at this time, considering resistance, teachers, etc, but I NEED the OT for him!!) Where do I go from here? Do I fight more for a school psych, or get an independent psych to speed up process? His nuro states he has an inability to reporduce letters, and the problem is anticipated to continued despite the maturaltional process. THANK YOU so much for any help!
SUBJECT: Re:Is this NVLD? Date: 97-04-13 14:10:06 EDT
From: Caitlin35
It's hard to say what ANYTHING is without knowing your child, but I would
certainly see if you could get him seen by a pediatric neuropsychologist or
other person i your area that is familiar with these problems. Your best
bets are to read the posts here (perhaps make a log and and read them
off-line), and get hold of the books on NLD that are listed in the posts
under resources, and ask your pediatrician for help in getting a good
referral. Also, don't let the professionals use jargon you don't
understand-be "politely persistent" unti they explain just what "finger
agnosia" IS! (By the way, it means your child doesn't have good awareness of
what his fingers are touching or doing, and that slows down his ability to
use them. Imagine if you were wearing thick gloves all the time and tryng to
sort pennies and dimes-that will give you the idea!)
SUBJECT: chat coming up Date: 97-04-13 14:13:10 EDT
From: Caitlin35
On April 15, I am doing a chat at the Homeschool academy on Parenting the
Absent Minded Professor (which is a way of "attracting" folks who may have a
child with NLD troubles and not know the term.) We'll bye talking about
dysgraphia, being lost in space, organizational problesms etc.It is from 9-11
Eastern time, and you can get there by hitting Keyword PIN, then education,
then home schooling then conference center. I think!! If this Isn't right,
I'll come back and fix it!--Kathy
SUBJECT: Re:chat coming up Date: 97-04-13 14:23:07 EDT
From: PBTanguay
Caitlin - is that 9 - 11 Eastern time a.m. or p.m. - I assume p.m. because you're in CA, but just want to make sure.
You can count on me "attending"
Pam
SUBJECT: Re:chat coming up Date: 97-04-13 14:58:08 EDT
From: RRoss27719
I am excited about the chat on April 15, and plan to be there. Please post if it is am or pm. If I cant find you, is it alright to IM you?
Thanks
SUBJECT: Re:chat coming up Date: 97-04-13 16:33:16 EDT
I can only speak from our personal experience re: being in public. At your
son's age it is difficult. We found that outside the home was very difficult
as well, whether it was at a social function, shopping, dining out - all had
the same result. She seemed to become overwhelmed when in a new setting, and
with lots of people (lots in our case could be 5 or 6). From her perspective
it was an unfamiliar environment with no ability to understand the "rules" -
many distractions which seemed to "short-circuit" her - and with people who
she couldn't "read". The bottom line was, we didn't take her to many places
where she would become "overwhelmed". It was all just too much to process -
visually, spatially and socially. Over the years, we gradually worked into
these situations. Our night on the town when she was younger was Burger King
- for months we always went to the same one. She got familiar with it, and
seemed able to handle it with repeated exposure. Tried to sit in the same
booth, ordered the same thing... We gradually introduced her to new places
and situations. The mall was a disaster for years - I became her personal
shopper! I may not have handled the situation properly, but it seemed to
work, and she is much better. At 12 she can go out to a real restaurant,
patiently wait for her meal, and behave appropriately. Rightly or wrongly,
it worked for us. Hope this helps.
SUBJECT: Re:advocacy Date: 97-04-13 20:27:27 EDT
From: SusanS29
"Still, I would ask that that the focus of your advocacy and brunt of your frustration not simply be directed at the teacher(s), but also extend to school districts, state, and federal governments. "
Advocacy by its nature focuses on the need of the child. That's what advocates do-we advocate for a child. If, in the process, the school district improves, that's wonderful, but it would be inappropriate for an advocate to use a child's issues to promote state and federal issues.
SUBJECT:
Reading fact-based text Date: 97-04-13 20:30:59 EDT
From: PBTanguay
I'm looking for help. Our daughter is 12 and in 6th grade. Not surprisingly, she is an excellent reader. However, she can't process fact-based text or identify relevant data. When asked to read Social Studies, her eyes glaze over. We get a study guide from the school with the questions which will be on her test. I can locate the portion of the page where the answer is, she reads it, can't find it. I read it out loud to her, some improvement, but not much. I realize some of the problems, literal interpretation (doesn't see the answer unless phrased the same), overwhelmed visually (not enough white space on the page), visual tracking problem, and so on. For the moment, I've given up. I look up the answers, type the study guide with lots of white space, the questions in normal type, the answers beneath in italics. Essays (where possible) are graphic organizers. She studies, zips through the test and gets an A. But she's not learning. I know this particular deficit area will continue to become more pronounced in the upper grades. The school has agreed to provide books on tape for Social Studies and Science next year. But I think that is only part of the solution. Anybody have any thoughts? I'm on the edge of panic about this.
Sorry for the long post.
SUBJECT: Re: Chat coming up Date: 97-04-13 22:38:22 EDT
From: Caitlin35
The chat is from 9-11 p.m. EST (which will be 6-8 p.m. for us West Coast
types, I hope.) You shouldn't have any trouble getting there, as I just
checked the path and they have a big post at the beginning of homeschooling
that says "Chat schedule." You might go there ahead just to make sure
though. I won't be able to answer IM's during the session, because I 'll be
typing like crazy but perhaps you can try a few minutes ahead of time and
then if you got stuck, I can help...I hope!--Kathy
SUBJECT: Re: Chat coming up Date: 97-04-14 05:27:12 EDT
From: Lookheart
I hope I can get online for the chat, it's been difficult for me at that
time, so if I'm not there that will be why, I've never been in a chat before,
will there be some way to make a copy for those of us who may not make
it?
SUBJECT: Re: Chat coming up Date: 97-04-14 10:25:56 EDT
From: SuZQ0321
<<<The chat is from 9-11 p.m. EST (which will be 6-8 p.m. for us West Coast
types, I hope.) >>>
Good luck signing-on, Kathy. It's almost impossible to get onto AOL in our area between 6-8 p.m. Busy signals is all you get . . . unless you know something I don't know. I'll be there if I can, and if my taxes are done . . . :-)
SUBJECT: Re:Is this NVLD? Date: 97-04-14 10:52:11 EDT
From: CHSMom
<they say they will not test him for LD>
It is illegal for the school to refuse to assess your son if you put the request for assessment in writing. Just write a letter stating you want your son assessed because you suspect a learning disability and you also want an OT evaluation. it's also irrelevant if "written exression isn't an issue until third grade". (don't they write stories in first & second grade?). Every child is entitle to an assessment. Also, ask your pediatric neurologist if he can provide your son with a diagnosis so you can get him qualified for OHI, which is a qualifying category under IDEA. 504 has different qualifying criteria and is for those who don't qualify for IDEA. I'll have to look up the exact wording.
Has your child had an OT evaluation for Sensory Integration Disorder? If this is present, it can definitely cause the kinds of behavior problems you describe. The Tourette syndrome Association publishes a lttle booklet entitled "When Discipline Doesn't Work" which I have found helpful. also, I think their inability to generalize what they learn impacts this area as well. I never knew when my younger son would fly into a rage, become physical and start swearing. I had to try to not let my concern for what others thought of me as a mother affect my reaction. I just had to turn my back, ignore him and let him finish. Fortunately, he's almost 10 (Wednesday!) not, and his behavior in public has improved.
PBTangeray - (not sure if I got that right). My son is in 9th grade and I still have the same problems with History and English books! Let me know if you find a solution. Of course, you've got an earlier start than I had, since I just found out about nvld.
Can't wait for the chat. The time is difficult for those of us on the West Coast. Is it possible to ever have a chat later, say 9:00 p.m. our time?
SUBJECT: Re:Is this NVLD? Date: 97-04-14 11:41:10 EDT
From: Mars000210
Hello, another area is dysgraphia. It may also be an area that may be causing your child his problem. Three of my children and I have this. Keep looking. Have him tested. There are differences between the NVLD and the dysgraphic children but many interventions for the written expression in school are effective for either child. Check out ldonline.org on the www. Read the glossary and then start exploring. There is an Article in the indepth seciton under technology ty Richard Wandermen that is right on target for dysgraphia. Barb
SUBJECT: Re:Is this NVLD? Date: 97-04-14 12:03:39 EDT
From: KevisB
<they say they will not test him for LD>
I agree with CHSMom. The Woodcock Johnson achievement battery showed clearly an LD in written expression in 1st grade with our son. When the standard scores were compared to even his FSIQ on the WPPSI (much lower a score than his VIQ subscore) it was clear that he was more than one standard deviation lower than his cognitive ability. When he was retested in second grade with the WISC and the Woodcock Johnson achievement battery, the discrepancy was even more pronounced. I cannot imagine waiting until third grade, as we had many modifications in place by second grade and should have had them in first grade to forestall a lot of misery. The school does consider his deficit in written expression a SLD (specific learning disability) so we have not had to find a different qualifying category.
Unrelated to NVLD, a friend of mine went to our district special services department concerning her suspicions of dyslexia in her early 1st grader and was told,"We don't really test for that until the 3rd grade." I knew that that was blatant misinformation and was able to help her get her daughter tested: all she had to do was write a letter. It is unfortunate that so frequently when people turn to "the experts" in the school district, they're given wrong info.
SUBJECT: Re:Chat coming up Date: 97-04-14 15:56:38 EDT
From: Caitlin35
Unfortunately, I got assigned the chat time, and there wasn't much I could do about it! and as my dh said, How are you going to get on at all with everyone frantically doing last minute taxes and checking the Web for forms and advice?? Obviously the nice lady who scheduled it wasn't thinking that April 15 may be a busy time.
I don't know about making a copy of something like that myself-I know how to
make a log of somehting else when I'm not IN a chat, like boards, but not
while I'm doing it...anyone know?
SUBJECT: Need Clarification Date: 97-04-14 16:30:15 EDT
From: LoMo4UBAH
Thank you to those who responded to my earlier post. I have a meeting next Tuesday with our school psychologist, and I will be requesting educational evals. in writing. I would also like to bring print-outs of some of these e-mail responses. Are there other other web sites available where I can quickly obtain info to take with me to my meeting?
I currently have a call into our pediatric nurologist regarding several of these issues, also. This term has not been used in our very large school system yet, but there is always a first for everything.
My main question is this....does this diagnosis/label come from the
medical(neurologial) field or from the educational realm? Is it a combo of
both? Thanks...I want to represent my child well next Tuesday! This board
has been trmendously helpful, and has given me confidence not to take their
This is addressed to anyone who is involved in arranging the conference in CA later this month. I'm sure many folks out there are in the same boat that I am. I just can't make it, much as I would love to.
Would it be possible to tape the workshops and general sessions. I think there are a lot of us who would be more than happy to purchase audiotapes of the sessions. In addition, since there are several break-outs and you have to select one to attend, many attendees will want info. on the sessions they were unable to attend.
There are organizations who will come in and record each session, copy the tapes and sell them on your behalf. Generally they don't charge a fee, but make their money off the sale of the tapes. Would this be a possibility????
I looked into going to the conference and like many of you can't go. I noticed that everyone who preregisters will receive a folder with all the information presented at the conference. I'm not sure if this is studies or speeches from the speakers - I know they do things like this at medical conferences. Perhaps that information could be copied - I would certainly pay for any copies that could be made of tihs info!
The problem is that the group that runs it is an ordinary parent group
without much money. the people who come and tape things want LOTS of money
up front, and will insist on pre-payment for at least 150 tapes (or
something) regardless of whether the tapes get sold or not. That leaves the
all volunteer parent group holding the bag for trying to find who wants the
tapes, having to trot to the mailbox to send them, and maybe being left with
a loss. So they don't want to. I'll look into any other possibilities of
getting the info, though. I'm speaking at one, and can share my notes on NLD
and the Family, and whatever other seminar I go to...Kathy
SUBJECT: Re:NLD
Conference Date: 97-04-15 01:45:50 EDT
From: SuZQ0321
You wrote: <<<Would it be possible to tape the workshops and general
sessions. I think there are a lot of us who would be more than happy to
purchase audiotapes of the sessions. >>>
I have been working with a company called Contemporary Medical Education about taping the sessions. The contract would be between this company and the speakers (as SHARE is not interested in this aspect). However, I received a contract today and it looks as though I'll have to sign away the rights to my first born child and more. I'm not quite ready to do that. I told them they'd have to simplify the terms or none of the speakers are likely to sign on. I can understand that they want to protect themselves and that they need releases from the speakers . . . but this contract was excessive (Kathy, I'll show it to you, if you come on Wednesday, to Borders). Anyway - there's hope that there will be tapes - from at least some of the sessions. The number for Contemporary Medical Education is 1-800-238-9009.
Hi - the booklet "When discipline Doesn't work" is written by Coleen Wang, published by the Tourette Syndrome Association, southernn California Chapter. Her email is cwangtsa@discover.net. If that doesn't work, her fax # is (909)794-3000. When I got it last year it cost $2.50. If you have trouble finding her, let me know.
I didn't understand what you said about you misunderstanding what they say. My younger son has a lot of OT issues, and I was upset that they have just been working on hand stuff to improve his handwriting. But it has made a world of difference for him. Of course, my older son, the one i believe is nvld, wasn't helped at all by this approach. So, each kid is different. But if it's suggested in his OT evaluation, it is my understanding that the district has to provide it for him. That's the purpose of an evaluation.
Can't wait until tomorrow - er, Tuesday - night!
I too would be interested in any and all information available from the
I noticed in the book "I Shouldn't have to tell you", this is listed in Appendix VIII as behavior in Asperger's and "obsessive compulsive interest in certain topics" is listed as behavior in NLD. My son appears to have both.
How do they differ and could perseveration be characteristic of NLD
also?
SUBJECT: advocacy Date: 97-04-15 08:02:59 EDT
From: Lookheart
Can a child with NLD learn to advocate for himself? We have tried for 4 years to have my son ask us for help when he gets frustrated, but he still can't and we only know it when he screams. They have told him at the school to ask for help and assume if he doesn't he doesn't need it.
SUBJECT:
Re: perseveration Date: 97-04-15 11:01:15 EDT
From: SuZQ0321
You wrote: <<<I noticed in the book "I Shouldn't have to tell you", this is
listed in Appendix VIII as behavior in Asperger's and "obsessive compulsive
interest in certain topics" is listed as behavior in NLD. My son appears to
have both. How do they differ and could perseveration be characteristic of
NLD also?>>>
"Obsessive compulsive interest in certain topics" is listed on the chart as behavior found in the child w/Hyperlexia. This child will focus on one very narrow, all-consuming area of interest, almost to the exclusion of all other interests. This is also one of the hallmarks of Asperger's. Perseverating behaviors are usually identified w/the child w/Asperger's, too. Perseverating refers to the continued repetition of words or motions after the point where they no longer serve a useful purpose (the child who washes his hands ten times when once was all he really needed or opens and closes a drawer several times before getting out what he needed in the first place). It may be a glitch in the same area of the brain which produces these two types of behaviors. We may just be dealing with variations of a theme, i.e.
"nonlanguage-based learning disorders" (as opposed to specific or
language-based disorders such as dyslexia). Generally speaking, the child
w/NLD is seen as a higher functioning child (traditionally there has been
less emphasis on the social aspects and iydiosyncratic behaviors and a _great
deal_ of emphasis on the visual-spatial-organizational aspects w/NLD) than
the child w/Asperger's, although this is not necessarily the case in "real
life" situations. By definition (see DSM IV), Asperger's emphasizes the
social deficits found in this disorder. I have spoken w/Ami Klin about the
fact that the Yale/LDA study was "turning away" individuals w/NLD. Since the
study deals with "social learning disabilities," many children w/NLD are not
considered "severe" enough to meet their criteria. At this point, the
defining lines are fuzzy. I understand that the Yale study has recently
determined Asperger's to be a nonverbal learning disorder, as opposed to a
higher functioning autism. At this point, I've probably confused you, more
than helped you, but even the researchers aren't in agreement. What is
important is that you are familiar w/your child's symtomology and devise a
plan which will work for him (or her). I'm looking forward to the chat
tonight, if I can sign-on to AOL. :-)
SUBJECT: Re:advocacy Date: 97-04-15 11:04:29 EDT
From: SuZQ0321
You wrote: <<<Can a child with NLD learn to advocate for himself? We have
tried for 4 years to have my son ask us for help when he gets frustrated, but
he still can't and we only know it when he screams. They have told him at
the school to ask for help and assume if he doesn't he doesn't need it.>>>
Anosognosia impedes this process. This is so severe in adults w/right brain
injuries that they can be paralyzed on the left side of their body and not
realize it. :-(
SUBJECT: Re:advocacy Date: 97-04-15 11:15:31 EDT
From: PBTanguay
Again, I can only speak from experience. We started to talk with our daughter in about 3rd grade about asking for help. However, asking in the classroom seemed to be too much for her. She would come home, we'd go through her day subject by subject and she'd tell me what she had problems with and what she didn't. She has great memory skills (plays the tape of what took place), and that helped. Then I would send a note to the teacher or whomever to get the help she needed. We've worked a lot on explaining that SHE knows what she understands and doesn't understand. We're in our fourth year of this, but she is starting to ask the teachers for help on a fairly consistent basis - at least those that she's comfortable with. She actually asked her math teacher a couple of weeks ago for "resource time" without first talking with me. GREAT progress. But, it has taken a long time. Don't mean to sound discouraging, but some things take time. Don't know if this helped or hurt, or what other folks have experienced.
SUBJECT:
Re: advocacy Date: 97-04-15 11:37:02 EDT
From: Caitlin35
Advocacy is hard for these kids-think about it, it's hard for US to say NO to the PTA lady who wants us to sew 12 costumes of dancing molecules, and it's why assertive training books sell so well.
I'd start with what the behavior is right now, and build from there. I bet
most children can ask at home for a drink of water, or to have someone pass
the salt. Explain that this is a kind of advocacy! The problem comes when
they think teachers will get mad if they ask for help (hey, it's happened
before, and they know they can;t always get the timing right.) So let the
teacher in on the secret, that you are working on the skill of ASKING fOR
HELP and please try to be very encouraging when it happens. (Some families
may even want a teacher note when it starts happening so they can do
something at home to celebrate a bit!) Then, I also would give two or three
specific strategies like "Check to see if the teacher is busy with another
student and wait your turn." I also give specific words like "I'm not sure
how to do the next step in this problem. What should I try next?" Hope it
Caitlin35 & SuZQ0321 - thanks for the info. on taping the conference. I guess there is a limited market for this type of material. I certainly hope that Contemporary Medical Education pulls through for all our sakes (without the requirement of your first born - unless that has some appeal :) ).
Thanks for the phone number.
SUBJECT: Diagnosis Date: 97-04-16 10:27:55 EDT
From: CHSMom
Have some questions about info in Sue Thompson's book: since my son is in high school, is it worthwhile to have a pragmatic language assessment, or is it too late? How much does a medical evaluation usually run in the Bay area? Everything she says in the book is my son, it's kind of spooky, like she knows him personally. (I was going to ask something else but can't remember.)
Great chat - Caitlin - hope you got some rest, and a finger massage.
SUBJECT:
Re: Diagnosis Date: 97-04-17 08:03:49 EDT
From: Lookheart
CHS Mom-I know the neuropsych eval was very expensive in our area that's why we pushed to have the insurance company to pay, the help of his neurologist was necessary. Maybe start there, or better yet start with a referral from the pediatrician with the neurologist telling the pediatrician your concerns.
Was a great chat.
SUBJECT: Re:Diagnosis Date: 97-04-17 11:17:51 EDT
From: CHSMom
Lookheart - Thanks. I have a call into the pediatrician, thought I'd start there, hoping he can do a referral through insurance. Let you know if it works. If so, info might help others.
Yes, it was a great chat. Thanks again.
SUBJECT: Please Come Date: 97-04-17 18:38:29 EDT
From: C Blatt
If you notice there is not one Chat on LD at all. The only ones are
the informal ones that brave people spend enormous amounts of times to set
up. Bit now we need to bring the message to Better Homes and Medical about
thsi So please come tommorow night 9:00 PM NYC to a Private Chat
Room in People Connection and type in LD CHat the more number that
express what kind of live Chat then we will be brining our message across
very strongly.
SUBJECT: Re:PARTY TIME Date: 97-04-17 19:29:32 EDT
From: Grace2al
Sorry I left the chat my computer left and I couldn't get back on. Yesterday we had our meeting We got the 504 and everyone is on the bandwagon. As my husband said I walked them through the info. To my son's school's credit once I had their undivided attention they were great even the resource person. Modified assignments including but not limited to removal of time restraints on tests. shortened repetition. use of dream writer/keyboard for written assignments. have him verbally repeat steps and projects, ideas etc.etc. and meet with new teacher before school start of each yr. with careful consideration as to teacher placement. Of course time will tell but as for now we are extremely relieved. It hasn't been easy and I know that if I wasn't in the field/ had a background in child development and persistence it never would of happened. Having a professional hat did help. I'm excited about the conference as I'm incorporating it into my course on cognition and learning.
Thank you to everyone that has been so helpful and answered so many ?'s. p.s. the school will supply him w/ a dream writer so I've been able to put off a decision on the alpha-pro. But I think that we'll go with dream writer as it costs the same and has so many more functions, main draw back have to recharge batteries at night. oh well. continue to look forward to others messages.
SUBJECT: Re:PARTY TIME Date: 97-04-17 23:22:37 EDT
From: Lookheart
Congratulations, my IEP meeting is coming up in 3 weeks. Im not a great
speaker so my advocate will do the talking. I will be incorporating a lot
I've read here and in the book. Any suggestions you could offer specifically
for a second-grader?
SUBJECT: Re:PARTY TIME Date: 97-04-18 01:53:20 EDT
What helped with us is giving the school a list of 5 or 6 open-ended ?'s to
look at. with the premise as that with so little time in the meeting I
thought that it might help to clarify the issues to be addressed. step 2 (for
us) brought in info and guidelines from Sue's book( which most had not seen)
next day dropped off the Frankenberger piece. I always placed them in the
mail slots with a friendly FYI. Always sharing my enthusiasm for the info,
that may not be for all but it really makes sense with our son. I wanted to
cut down on the" whats the main prob. and what are we going to do". having
heeded all the concerns on the 504 board I wanted to make sure that it was
signed sealed and delivered in one meeting. this may not be the way to go for
others but I've found that it works with my school district. I know it's the
therapist in me talking but if you can calm the seas and establish some
rapport it does help. Walk softly and carry an academic stick:)
SUBJECT: Re:IEP
suggestions Date: 97-04-18 09:58:03 EDT
From: Mars000210
Hello, what worked for me was writing my own goarls and interventions and taking them with me to the meeting. It helped me clarify my thoughts, kept me focused, these are the problems these are the interventions that have worked.
Lo and behold they used all of mine in the girls plan.
SUBJECT: Re:PARTY TIME Date: 97-04-18 11:30:17 EDT
From: PBTanguay
Good for you! It's nice to see a win, and hope we all have more of them because of this BB. I couldn't agree more with your comment about establishing rapport. The big stick should be the absolutely last resort...more bees with honey and all that.
And good luck to Lookheart!!!
Pam
SUBJECT: Re:PARTY TIME Date: 97-04-18 17:59:44 EDT
From: Willsons
Please describe a dream writer. Thanks.
SUBJECT: non verbal child Date: 97-04-18 18:03:54 EDT
From: CUTH HOW
I teach OI/OHI. I have a student that is non-verbal. I am looking for some
new ideas or curriculum for teaching reading to a non-verbal child . I am
using a power Book Lap Top computer with voice out put., a word prediction
program and inlellitalk. The child Is to high functioning for a picture
board. She is 9 yo with a sight word vocabulary of 2nd gr level. She has
great difficulity formulating sentences. PLEASE HELP!!!!!!!!
SUBJECT: Re:PARTY
TIME Date: 97-04-18 18:07:30 EDT
From: Willsons
Having an advocate for support is fine, but please don't underestimate
yourself; I like it when a parent speaks directly to us. Noone is expecting
you to present your thoughts flawlesssly. We really care about what you have
" What helped with us is giving the school a list of 5 or 6 open-ended ?'s to look at. with the premise as that with so little time in the meeting I thought that it might help to clarify the issues to be addressed. "
I have found that to be a good approach with 504's also.
IEP's are based on the child's educational needs. I have found that by
writing a 504 that states the problem the student has first,and then the
interventions to help with it, the schol understands better the need for
them.
SUBJECT: Re:PARTY TIME Date: 97-04-19 09:11:01 EDT
From: SusanS29
"Having an advocate for support is fine, but please don't underestimate
yourself"
I agree with that up to a point.
When a parent has the skills to articulate his or her child's needs, that's wonderful. But if a parent feels the need to have someone there, at that point I really think the parents' needs must be respected.
I've been on both sides of the table. I've been the special education teacher running the IEP; I've been the parent receiving the "bad news" about her child's learning disability. I've been the parent who had a different view of what the child needed than the school did. Without my professional background, I never would have gotten what my child really needed-and this was in a good school with generally excellent special education services.
When it comes to a 504, I think an educational consultant or advocate is crucial. Otherwise, in my experience, the parent comes across as just another difficult parent with a list of demands. Shouldn't be that way.
I know for a fact that advocates have a "bad rep" in schools. I've seen some very bad ones. I've seen advocates who had attitudes like union organizers- their goal seemed to be the "greater good"-more rights and more services for children in need, more say for parents-to the point of disregarding what that particular child needed. I've seen advocates who came in and attempted to order the school to do "such and so"-in this case for an LD student-when the advocate had no background whatsoever in LD-except via advocacy.
On the other hand I saw a great button at the last ChADD conference. It said "The word "advocate" does not begin with the letter B!"
I think, when all is said and done, if we're going to accept the children as
individuals with strengths and weaknesses-I think we should extend that to
the parents also. They don't spend money on educational consultants and
advocates lightly.
SUBJECT: Reference Info needed Date: 97-04-19 09:36:28 EDT
From: LoMo4UBAH
I have a meeting on Tuesday with school personnel. My son has been diagnosed
with motor integration and motor planning disorders. He is 6 and almost
incapable of writing, yet the school is daying he doesn't qualify for LD
(written exp. not tested until 3rd grade) or OHI. I am trying to gather info
on NLD as he fits all of the characteristics I have read on this board. Only
problem is I am in the position of having to educate, and I need some solid
resources...no one has heard of this! Any articles that can be forwarded to
me, or info that I can site would make my case stronger. Without this board
since i just got kicked off and came back on I'll give dreamwriter info now
and come back latter. Ph. 1-800-663-7163 or http://nts.dreamwriter.com
cost about 250. got to go.......
SUBJECT: What not to say Date: 97-04-19 13:25:50 EDT
From: CHSMom
2 phrases to add to "I shouldn't have to tell you!": "You should know that [or how to do that] by now" and "How many times do I have to tell you?" I said the first to my son last night and he just looked at me and started laughing (since he is 15 I have been sharing all the info on nvld with him).
He said, "that sounds like "I shouldn't have to tell you." He's right. It's
hard to change old habits.
SUBJECT: Re:PARTY TIME Date: 97-04-19 13:48:19 EDT
From: SuZQ0321
You wrote: <<<When a parent has the skills to articulate his or her child's
needs, that's wonderful. But if a parent feels the need to have someone
there, at that point I really think the parents' needs must be respected.>>>
I agree w/everything you've said. I've been on both sides of the table, too. And, no matter how articulate you are, the cards are generally stacked against you as a parent. Even though I train teachers and lecture and conduct inservice instruction on special education issues across the country, I ALWAYS take someone w/me to my son's IEP, now. Don't forget that additional ingredient - - emotions - - that comes into play, when it is YOUR child that's being discussed (the one you nursed and changed his diapers and listened to his horror stories everyday for years when he came home from school). I would advise always having someone, even if that person is less knowledgeable than you, if only for support. You can do all the talking, if you feel comfortable, and your child's "advocate" can "hold your hand" and "pat your shoulder." I admit, my particular district is not known for being cooperative, and the powers that be are quite ignorant about NLD, so children in this district seem to suffer more than most. However, IEP meetings are, by design, intimidating. In our area, at least, there can be 8-10 "professionals" and one parent. It becomes a "strength in numbers" kind of thing. My final plea is: always take someone with you, even if it is your next door neighbor, who knows nothing about NLD. You'll see - - it helps.
:-)
p.s. I always declare that I am attending as a parent at the beginning of the my son's meeting. I don't maintain the same "professional reserve" as I do at IEP meetings where I am the specialist, delivering a report. I separate those roles. My son needs me to be his mother (because there is no one who has the same committment toward him that I do) and other professionals can serve in the other roles, as needed.
SUBJECT: Re:What not to say Date: 97-04-19 13:51:13 EDT
From: SuZQ0321
You wrote: <<<It's hard to change old habits.>>>
;-)
SUBJECT: Re:Reminder Date: 97-04-19 14:50:43 EDT
From: Caitlin35
I want to get one of those Greek double masks with the happy and sad face
together to remind me about NLD kids...they are SO smart about some things,
and SO not smart about others! I have to remember to "change gears" even in
the middle of an erudite conversation about some philospohical issue to point
out, "You are pouring all that milk onto the floor! STOP!"
SUBJECT: Re:PARTY
TIME Date: 97-04-19 16:51:52 EDT
From: Lookheart
At this point in our town there is a lot of talk about oversupplying the children with special needs. I was talking to a neuropsychologist recently who said that due to the general nature of the diagnosis of NLD there is a backlash effect, the school system fears this label is an excuse for children with behavior problems that parents haven't dealt with. Although I sense that attitude coming from the school, I feel somewhat confident that the diagnosis my son has is real because the neuropsychologist who did the testing has a good reputation but due to my general self-doubting nature I am always inclined to think, maybe if I had done things differently.....
We are taking our respective "battle" positions for our upcoming IEP meeting, the school is suggesting he go into a regular classroom with some supports in a different school which is closer to home as opposed to the "inclusion/delusion" program as I heard someone on another chat say once. We are looking into 766 schools, although none have looked appropriate yet. I suppose we are all hoping we will fall somewhere in between, it's such a game.
I do get emotional at meetings and am afraid of my temper when they say
"things will work out all right" the way they propose to do things, and
that's another reason I need an advocate.
SUBJECT: Re:PARTY TIME Date: 97-04-19 17:28:49 EDT
From: Willsons
I agree fully with all the points you've made. I wonder if my comment was
somewhat misinterpreted. I'm not saying ,"Don't bring an advocate," or "You
should do the talking." I have seen parents so intimidated that they remained
silent. I really like to hear what a parent has to say. I get annoyed at
Committee members who interupt or don't really listen to/make rapid
interpretations of what the parent is saying. I think good information gets
lost that way. I've also experienced an advocate who
generated such hostility that the parent finally had to intervene to get the
discussion back on track.
SUBJECT: Re:advocate Date: 97-04-19 20:28:01 EDT
From: Grace2al
Clarify which hat you have on. I agree. When we were getting testing done
and prior to the 504 meeting I would always state that I'm here as his mom
please do not asume that I know what you are talking about. Although I didn't
have an advocate if I did have one 2 years ago things would have turned out
better then. I didn't have time this time to do it but the psych. was like an
adv. believe it or not. She would ask me to explain what I see going on and
did the pat on the shoulder one or two times. A friend with an ADHD no doubt
about it kid always brings one from CHADD. It's been a big help. hope
This sounds just like my son!!!!He has severe visual-spacial difficulties.
When tested the Psych. said she had never had a child test so low before. He
basicallly scored so low that she couldn't score him. He also has Non-verbal
disabilities. Please reply with any related info. you may have, or e-mail to
mfreeze640@aol.com.
SUBJECT: Re:advocate Date: 97-04-20 07:26:38 EDT
From: Lookheart
I was also told by this neuropsychologist, "it doesn't matter how much research you do on your own, unless you have an expert in the field, they will not listen".
I was told at the last meeting I had with the social worker that although they have not had an actual diagnosis of NLD, they have dealt with kids "like this" before and therefore know what to do.
I wish I had said that with a new diagnosis comes new interventions but always think of things later that I should have said.
SUBJECT: Medical or psychological? Date: 97-04-20 13:01:04 EDT
From: EdLincoln
I would also like to hear the answer to a question that was asked in a prior post. Is NLD a medical or a psychological diagnosis? Is it something like dyslexia, which is diagnosed on the basis of test scores and behavior, and which can not be consistently linked to any detectable organic problem in the brain (although it may be caused by an undectable brain abnormality)? Or, is it a neurological disorder, caused by a physical problem in the brain that we can detect and which is diagnosed on the basis of neurological exams and observations of the brain and brain activity? If someone handed a good neurologist a set of brains, could he or she tell if they have NLD?
SUBJECT:
Re: Medical or psychological? Date: 97-04-20 15:04:46 EDT
From: Grace2al
I'll hedge my bet and say both. It is on the basis on neuropsychological testing that these abnormalities are present. It is definentely a biological diagnosis with psychological consequences. In my son's case the eeg was normal but no cat scan was done. Although you can have a dsm dx. it still can have a bio. etiology. Again it is a cluster of symptoms not a clear disorder where all people have all the same behaviors. Primarally it is the leval of functioning in the right hemisphere of the brain vs. the left, based on how the brain has so far been charted.
SUBJECT: Re:Medical or psychological? Date: 97-04-20 18:59:32 EDT
From: Caitlin35
Certainly my son has an abnormal CT scan that shows damage to the right brain
( and this was done when he was about a year old) and he has severe NLD and
they can't even get a performance IQ score on him-he is 17 and just refuses
now to do that part. (He also has a 4.0 in school with appropriate
modifications for NLD-shortened writing assignments, a note taker/organizer,
resource support, and he takes math in resource instead of regular ed.) We
also know that MANY children with damage to the right brain from head trauma,
radiations, brain tumor, etc. do manifest NLD symptoms. And, according to my
kids pedi neurologist, a large gap between verbal and performance IQ (60
points, in both my boys' cases) means you have "organic brain injury" in
there somewhere.
SUBJECT: Re:Reading fact-based text Date: 97-04-20 21:07:22 EDT
From: JKaac
Sorry to take so long to get back to you. I've been off line for eight days and look how much I've missed! It sounds like your daughter has difficulty with saliency determination, which is classically seen in sixth grade in social studies. This is due to the wealth of new information and difficulty determining what is relevant, important, etc. Smart kids can typically "coast" through elementary school because there is not a great deal of new information that is presented unlike sixth grade soc. Mel Levine speaks of this learning style.
SUBJECT: Re:Medical or psychological? Date: 97-04-21 12:32:13 EDT
From: EdLincoln
I know that many "psychological" problems probably have physical causes. I also know that many Physical/neurological/organic problems have psychological symptoms. However, in practice there tends to be a fairly clear line between problems diagnosed on the basis of symptoms (which include dyslexia, and are often called psychological) and ones diagnosed by looking at the nervouse symptoms (which are called neuroligical). Problems of the first kind may be correlated with variouse brain abnormalities, but these are secondary in diagnosis. Someone with the symptoms of the disorder would be diagnosed as having it regardless of whether he had any of the brain abnormalities sometimes associated with it. Which side ofthe line does NLD fall on? Could you say for certain someone had it just by looking at Catscans, EEGs, MRIs, and the results of a brain biopsy? Could you tell somone had it just by giving him or her tests and talking to them, without giving them a medical examination?
SUBJECT: Re:Medical or psychological? Date: 97-04-21 16:50:22 EDT
From: Grace2al
There are always a multitude of answers to these ?'s but I'm wondering where this is going. If we are opening a debate or academic disscussion that's one thing but if we are arguing a point that's different. I'm not complaining just want a focus for the answers
SUBJECT: Re:Medical or psychological? Date: 97-04-21 19:44:30 EDT
From: Caitlin35
Ed-suppose you let people know what you want to do with this information? Maybe people could be of more help. I do know several people who have had children with right brain injury due to head trauma or radiation therapy whose doctors have told them that certain NLD symptoms would be very likely to occur. For myself I am far more interested in what I can do to work to remediate my sons' disability than in the theoretical etiology of the damage to the brain...and I bet most people on the board feel the same. If you have other info, though, share it with us by all means.
SUBJECT: Re:Medical or psychological? Date: 97-04-21 22:19:18 EDT
From: EdLincoln
People seem to think this question is "leading somewhere" when it isn't. I merely tend to categorize problems like dyslexia or ADHD differently than I do ones like Muscular dystophy or multiple schlorosis. Perhaps I am being too unclear in my phrasing of what I am asking.
SUBJECT: I'm starting the testing... Date: 97-04-22 00:43:33 EDT
From: Tinpan727
" I have to remember to "change gears" even in the middle of an erudite conversation about some philospohical issue to point out, "You are pouring all that milk onto the floor! STOP!"
Caitlin and everyone,
If that isn't what goes on in my house I don't know what is! I'm really thrilled to have found this folder and all this great information. I just requested testing for my 10 year old son. The school psychologist isn't sure that he will be "referred" because he's not performing "2 years below grade level". The meeting is Thursday, and we'll hear Friday or Monday...I'm also exploring homeschooling as an option, but I'd like to hear what the school may plan as well. They've been sympathetic, but are more into the contract/reward groove than I am. Carrots (or movies or video games or anything) have yet to get my son motivated, or productive.
I have been advised that the 504 is an escape from financial responsibility
for the school system out in MA, then an attempt is made to shift the burden
to the insurance companies, and it is better for us to stick to an IEP. As
I work on it a thought for some members of the educational team comes to mind
"I Shouldn't Have to Tell You."
SUBJECT: I Shouldn't Have to Tell You Date: 97-04-22 11:52:29 EDT
From: Jandyross
Just received my copy yesterday and pretty much got through it last night... it left me feeling frustrated and angry and sad and also very relieved to have some concrete suggestions... my son is 16..almost 17.. I have known about the difference in his IQs for almost 6 years..and no one could tell me how it would impact his life except that he would be frustrated. he is starting at Community School today..I'm hoping he will get some of what he needs there..the teacher will get the book!..I need about 10 copies of it! .. the local public schools would not do anything... I should have pushed harder...but I didn't know what we were dealing with either... I called a Special Student Study Session in February of 1996 and they didn't follow through with any recommendations.. it seems to me that special ed. teachers would be aware of this problem..I did tell them that there were 35 points between his verbal and performance IQs.. seems like this would get their attention??.. We had all the testing done privately...
Ed - It's okay. I share your curiosity. I'm so new to this diagnosis that I feel I need lots of things clarified, and the information that is out there has not been very accessible. (I still haven't gotten I Shouldn't Have to Tell You - and I called the PBB office). I'm still struggling with the does my son have it or not issue. And also, is the main issue the difference the wide gap between performance and verbal scores on the Wechsler? Also, I have found in whatever info I have been able to find, that psychologists don't diagnose this - it's usually a neuropsychologist or a neurologist. Does that clarify the issue at least a little?
I am finally getting some results though - the school occupational therapist is going to be observing my son this week and the speech therapist is going to test him for an auditory processing problem. We also got the okay from our insurance company to have my son have a full team assessment at the Child Development and Rehab Center here where I think we'll finally get to see a Neuropsych! Anyway, help is coming but it is OH SO SLOW!!
I have another question and that is do all of you who have a definite diagnosis share the commonality that your children have trouble reading social cues? Was this a problem that was more noticeable as your children got older or has it always been there. Right now, my son has many friends, enjoys his class room, but sometimes seems like they're at a more sophisticated level socially than he is. I sometimes think this may be an area that will become more difficult for him, especially as his friends become more abstract thinkers.
P.S. When is the Web Page coming? We're leaving AOL in May and I'd like to be notified in some way when it's available.
That is so infuriating. It's that attitude that forces us, as parents, to be in an adversarial position. It has always boggled me how they think we can divide a child into pieces - educational, emotional, physical, medical, home life, etc - and say we don't have to be concerned with that part. Each child, person, is a whole and all the aspects are interconnected. Additionally, isn't the primary objective what's best for the child? I'm not trying to imply that a teacher should give out medical advisce or dispense meds, but to just dismiss an issue because "it's not my are" is ridiculous - and doesn't help the child.
There, got that off my chest...
SUBJECT: Re:Medical or psychological? Date: 97-04-23 11:17:01 EDT
From: SuZQ0321
You wrote: <<<People seem to think this question is "leading somewhere" when it isn't. I merely tend to categorize problems like dyslexia or ADHD differently than I do ones like Muscular dystophy or multiple schlorosis.
Perhaps I am being too unclear in my phrasing of what I am asking.>>>
Ed - I'll take a quick shot at this. In medical diagnosis, there are the categories of disease and disorder. Disease has a specific, traceable etiology (i.e. heart disease). The source of a disorder is less specific (i.e. seizure disorder). A syndrome is a set of symptoms occurring together. Epilepsy is a neurological syndrome disorder. NLD is also a neurological syndrome disorder; which means there are several variables or characteristics which must be present for an accurate diagnosis. Three distinct areas ususally evince some degree of dysfunction in order to diagnose NLD: motor, visual-spatial-organizational, and social. There may also be additional characteristics, too (i.e. tactile-perceptual). The degree of deficit in each of these areas influences how the disorder presents in each individual.
Although there may not be a specific leision or unequivocal sign of brain
damage observable, abnormalities can be detected, as well as "soft signs",
such as neuromuscular clumsiness, poor sense of direction, and slight
twitching, which suggest an abnormal functioning of the central nervous
system. A neurologist will rule out other possible reasons, in order to
differentiate NLD from other similar disorders. Like epilepsy, each
individual with NLD functions differently. Poorly defined diagnosis within
the syndrome will result in ineffective intervention. NLD is fairly unique
among disorders, in that it can be both developmental and acquired (it has
long been known that head injury victims can "acquire" the characteristics of
NLD). But, it seems your question centers around disease vs disorder
syndrome, not medical vs psychological. Hope this helps. :-)
SUBJECT: Re:IEP
suggestionsI have ano Date: 97-04-23 11:30:05 EDT
From: SuZQ0321
You wrote:<<<I have another question and that is do all of you who have a
definite diagnosis share the commonality that your children have trouble
reading social cues? Was this a problem that was more noticeable as your
children got older or has it always been there.>>>
This is usually not the first concern, but rather something that is "grown into." Very young children are just learning to read social cues, so a disability in this area will not be as noticeable (you don't have the same expectations for a four year old that you do for a twelve year old). Also, children that are carefully monitored display less social ineptitude.
However, even when a child has developed a "good" system for compensating,
this tends to break down in highly novel situations. This child's responses
are learned (cognitively) - - and will not apply to all situations. Many NLD
chidren are popular among their friends, as they have gravitated toward
friends who accept them and help them along. However, even a popular child
is highly vulnerable, at a risk for bullying and victimization. :-(
P.S. We hope the website is up soon . . . It's a long process . . . I'll post the info. ASAP.
SUBJECT: Re:Medical or psychological? Date: 97-04-23 11:58:57 EDT
From: EdLincoln
Yes, your response does help. I am just not familar with all the correct terminolgy to ask what I was asking. To make sure I understand what you were saying, I will rephrase parts of it. Tel me if I am way off.
NLD is a cluster of connected symptoms, that does not have a single common physiological cause that we can detect. People are diagnosed with the disorder if they exhibit enough of the symptoms. Examination has revealed leisons or other physical problems in the brain of some (but not all, and not most) people with the disorder. These are not necessary for the diagnosis, but are usefull for research into causes.
In an earlier post, I asked "given Catscans, MRIs, EEGs, and the results of a brain biopsy, could a neurologist tell that someone had NLD?". The answer if I understand your post correctly, is NO. In diagnosing NLD, the important thing is the symptoms and test scores.
Is the abve more or less correct?
It sounds like NLD is almost a mirror image of dyslexia. If I understand correctly, dyslexia is diagnosed when the characteristic symptoms are present, the Verbal scores on IQ tests are much lower than the person's general level of intelligence would indicate, and certain more specific problems were ruled out.
My "medical vs. Psychological" distinction comes from what I perceived to be
the difference between psychology and neurology. Perhaps my perception of
the difference between these disciplines was wrong. I had thought that if
there was a single, specific, identifiable problem in the nervouse system
that consistently caused a set of problems (such as cerebral paulsy), than
it generally was classified as neurological, where as psychology dealt with
clusters of symptoms that may or may not have some physiological cause. Of
course, epilepsy doesn't really fit in to this distinction.
SUBJECT: Re:IEP
suggestionsI have ano Date: 97-04-23 14:47:18 EDT
From: MGordon150
Darn! The social situation you described sounds like what is happening with my son. I found a website with Richard Lavoie's Educational Outreach. In case you all don't know who he is, he's the man who did the FAT City Workshop video - an excellent video that gives you a very realistic glimpse of what it's like to have a learning disability. He has done another video on social relationship problems people with learning disabilities have. He tends to be stress a global and not specific population, but I have found him very helpful. Anyway - I got to his web page from www.ldonline.org (Learning Disabilities On Line) if you are interested. I was able to download the the guide page to the Social Problems video.
Martha
SUBJECT: Re:I'm starting the testing. Date: 97-04-23 15:47:35 EDT
From: LoMo4UBAH
Your situation is very similar to ours. Despite nurological testing and obvious and extreme difficulty in daily work, my 6yo son is not "severe enough". We were actually told yesterday that the school is not in the business of preventative education...they have to wait until the problem becomes more significant!! We too are planning on homeschooling him for first grade (I'm a former LD teacher) if the school doen't provide appropriate placement...but I will continue to fight! The only bright spot was the school psychologist had just been to an intensive training on NLD and I could see once I made the connection for her that she agreed he appears to be a clear case. She even contacted me today with the name of a dr. at a local university doing some resarch in the area. Problem is it isn't recognized as a special needs category yet. Is it being accepted in schools in any other states? Are other parents frustrated to the point of homeschooling due to lack of support from the schools? Would love to hear from others in same situation.
SUBJECT: Re:I'm starting the testing. Date: 97-04-23 16:15:03 EDT
From: PBTanguay
LoMo4UBAH - where did your school psychologist receiving the NLD training you mentioned in your last post?
I think we have all faced the same struggle you are going through with your school district. It isn't easy, but we're here for you. Keep up the fight!
SUBJECT: Re:I'm starting the testing. Date: 97-04-23 17:25:01 EDT
From: Lookheart
I've thought about homeschooling but would like to know if you want to do it because of social issues or learning issues or both. My son has been at soccer camp this week and I got a chance to observe him in "play" situations, it broke my heart to see all the kids make fun of him and call him names. I also believe in preventive education, it appears the school is only looking at my son as a "first-grader" doing "as well as other kids" so doesn't really need any special interventions.
SUBJECT: Re:Medical or psychological? Date: 97-04-23 19:42:15 EDT
From: Mars000210
Hello, just thought I would add to the difinitions here. The areas blend when you talk about a pshychological vs neurological disability. Within the medical community there used to be a clear seperation between those disorders that had a neurological basis vs those that had a pshychological origin. Those areas have blended as research has proven that chemical changes may affect the neurological functioning of a person, as well as tramatic injury to the brain, or lack of stumulation given to a child can result in less growth in the brain. An example would be that a child who has a behavior problem, might have it because there brain lacks enough of certain chemicals for the neurons to send signals properly from one neuro to the next, the child may have had a poor home life, abuse/ no stimulation as an infant/ injury to brain from trauma, verbal or pschological trauma.. Which caused the behavior problem a nerologist will look for trauma ,abnormalties in the brain or will make a diganosis on symtoms presented. The pshychiatris/ pshychologist will look for at symtomology and try and find the answers.. The two areas of medicine work with each other these days to find the cause and thus the right treatment because there are so many symtoms that have different causes, some physical ( which may or may not be seen with technology, genetics plays a role) and some may be physchologically based. Anyone can acquire the symtoms of a learning disability from either area at any time in their life ( ask a stroke patient, they know). The schools don't look at the medical information they look at the symtoms only, can he read, write, do math, be organized, have enough self control to learn the material. So for me it is nice to know the cause only in regard to prevention, wear a helmet when riding bike,buckle them up in a car and be kind to your children. Also be kind to yourself, head trauma, strokes, physcologial abuse could make you a special needs person one day. Barb
SUBJECT: Re:Medical or psychological? Date: 97-04-24 06:20:39 EDT
From: Lookheart
Barb, Can you cite some research that talks about how early child neglect, under 3, could lead to either behavior problems later on or symptomatology of NLD?
SUBJECT: Re:Medical or psychological? Date: 97-04-24 09:03:28 EDT
From: Mars000210
That would take me days to sort through the medical libraires to see what type of research has been done and my ARD meetings are comming up. I don't have the time.
I hope my last post wasn't confusing. The point I was trying to make is that, I just hear some parents blamming other parents for their childrens learning problems and it makes me sad as there can be a host of reasons why a child has a disabiliity.
I would hope parents would stop and think that they shouldn't take on the blame for having a learning disabled child, unless you have been abusive to your child, it is not your fault.
I have three children who I have geneticly passed on my disability too and one son who escaped with his neurons all in place. I don't take blame or credit. We work with what we have.
Barb
SUBJECT: Re:Medical or psychological? Date: 97-04-24 12:03:25 EDT
From: Caitlin35
Ed-Actually, I think you may be confused about the idea that there is a neat and clean dividing line between psych. and medical problems, as Mars has said. You can't see any brain lesion in bipolar disorder, either, but we know that in most cases lithium helps dramatically. We also know (as any doc will tell you) that cerebral palsy is a "garbage can term" which really means "something in the brain went wrong and the person's motor skills don't work right." CP comes in wildly differeing forms of at least five to six types and innumerable subtypes. Plenty of kids have CP with no brain differences we can see. what is boils down to is that we are in kindergarten as far as knowing what goes on in the brain. the exciting part is that more progress is being made all the time!
Is there any evidence of prenatal causes?... I had high blood pressure in the last month of my pregnancy..and an induced birth and forcep delivery....Jan
Don't know for sure, but I had a difficult pregnancy - very high blood pressure, gestational diabetes, premature induced birth with pitocin. Also, due to a knot in the umbilical cord, my daughter had reduced oxygen during the birth process. Which, if any, problems caused this disorder, I don't know. But there does seem to be a high incidence of pitocin births with NLD kids.
SUBJECT: Re:Medical or psychological? Date: 97-04-24 13:55:02 EDT
From: EdLincoln
I knew the line between psychology and neurology was fuzzy. I also knew many psychological problems had physiological causes. I had just been under the impression that when a problem had a readily detectable and consistent physiological cause, it was called a neurological problem. Likewise, I thought that psychology dealt with problems that don't have physiological causes, that we THINK have physiological causes, that sometimes have physiological causes, or that have physiological causes we can't yet detect. Apparently I was wrong about the difference betwen the two disciplines.
SUBJECT: Re:I'm starting the testing. Date: 97-04-24 15:05:59 EDT
From: CHSMom
Unfortunately, the special education system is based on failure. In other words, for a student to qualify for services, it must be proven that the child is "failing to progress". Although it seems as though educators should be in the business of preventative education, the realiity is they just don't have the time or resources. At least in my state, they can barely keep their heads above water, mainly due to lack of funding. What state are you in?
I'm wondering where the study is being done that you mentioned.
SUBJECT:
Disorder vs Disability Date: 97-04-24 16:23:07 EDT
From: ShelleyHL
It seems to me that there is a difference between a child with a non-verbal learning disability (poor motor skills, good verbal) and a non-verbal learning DISORDER (poor motor, good verbal, poor social/pragmatic skills etc.). Could someone please clarify this for me. From what I have read and heard, Non-verbal Learning Disorder has a variety of distinguishing features most notably motor and social skills weaknesses. In my experiences, I have worked with LD kids who have no social difficulties but do present with fine and/or gross motor weaknesses that affect learning. Do these kids really have a Non-verbal Learning Disorder or does the social pragmatic component have to be evident as well. Have I missed a boat?ShelleyHL
SUBJECT: Re:Medical or psychological? Date: 97-04-24 16:26:13 EDT
From: Lookheart
Barb, just thought you might have the references handy. The reason I asked is because we adopted my son at age 2 yr 9 mos and there is some indication he may have suffered from neglect in his early years. I have looked through medline in the past but did not find articles describing the associations you made. I will continue to look however and may have some new words to look under thanks to your interesting message.
Boy, does this hit home. My son was induced at term due to large birth weight...and the induction DIDN"T WORK!! I had to go home and wait two more weeks, only to be induced again!! During labor his heart rate dropped and we had an emergency C-section. What are the statistics, if any are available?
SUBJECT: Re:I'm starting the testing. Date: 97-04-24 17:53:53 EDT
From: LoMo4UBAH
I'm in A5tlants, and I understand alot of research is being done at Emory University. I'm trying to track info down...maybe we can get in on some of the preliminaries (testings, etc.).
You wrote:<<<My son was induced at term due to large birth weight...and the
induction DIDN"T WORK!! I had to go home and wait two more weeks, only to be
induced again!! During labor his heart rate dropped and we had an emergency
C-section. >>>
This is very interesting. In fact it sends chills down my spine. I could have written the above post, myself. One of the surprising early findings of the Yale/LDA study reported by Dr. Bonnett (sp?) at the Chicago conference was a significantly high history of induced labor. This information was derived from a questionaire used only for children currently diagnosed w/Asperger's, but as they're now saying Asperger's is a nonverbal learning disorder, we may have hit on something here, too. Sorry, I don't have time to read all the new posts - - you guys are too quick. See you on Saturday, at the symposium. P.S. Some of the sessions are being taped. Contact CME at 1-800-238-9009 or e-mail them at cont-ed@silcon.com. :-)
SUBJECT: Re:Medical or psychological? Date: 97-04-24 20:19:10 EDT
From: Ajad2
Hello everyone,
In my case I have a six year old son that has an arachnoid cyst in the left temporal, frontal, and parietal lobe, and asymmetry of mesial temporal lobe structures, had two seizures, but no more after that. He has seen his neurologist since he was one, and has delays (still in special ed preschool) and his doc still says that the seizures and delays are not from the problems with his brain.....so I guess it can go either way. thank you
SUBJECT: Re:I'm starting the testing. Date: 97-04-24 20:30:53 EDT
From: Lookheart
I think that there may be one thing the ed system is overlooking although I'm sure I will have to choose my words carefully if I tell them this, is that with these kids they take it so hard that they are not performing as well as cognitively they think they should be.
SUBJECT: Re:I'm starting the testing. Date: 97-04-25 08:33:51 EDT
From: Mars000210
Hello,
just thought I would give everyone something to think about. The
system doesn't have to be based on failure. Neither of my girls were failing
or below grade level and they quialfied for services. Was it a fight yes, but
it was worth it. I fought for interventions that would prevent them from
failing.The thing with interventions that are preventive is that as a parent
Yes, me too! My son was 4 weeks past due date, then induced. The Pitocin was dripped for 10 hours with no contractions until they had it at a really high level. As soon as I got contractions, they determined he was stressed and emergency C-section was done. Low Apgar score initially. I had also had mild toxemia for two months, been on strict bedrest. He weighed only 7 lbs flat at birth despite 4 weeks late. Long fingernails, no amniotic fluid in womb. Although we had been having stress tests twice a week, I think he was "overmature." My subsequent doctor with my daughter's birth could not believe they had allowed me to go four weeks overdue having toxemia. There was no doubt about date of conception. Kevis
Interesting posts! I too was 2-3 weeks late for my son. I had been planning on a VBAC after two c. sections and I never went into labor. However, I was not induced. I ventually had a third C.S.
Another thing I'm wondering about is allergies/asthma. At age 2, my son had pneumonia and tremendous difficulty breathing for about one week before he turned blue one night and we rushed him to the hospital. He had a blood oxygen level of 87% (which is low) and no one knows how long it had been that low. For some reason, no one ever thought about asthma during the week he was really suffering, and in fact every time I took him to the doctor, he felt my child was breathing well. Still, the thought haunts me that this week of lack of oxygen in some way is responsible for problems he is having now. By the way, he had a low oxygen rate for five more days until a pediatrician was called and FINALLY diagnosed asthma.
I only ask about the allergies because people keep coming to me and telling me there is a high correlation of LD's in children with allergies. Can anyone verify this for me?
Martha
SUBJECT: Past Due/Problem pregnancies Date: 97-04-25 13:48:53 EDT
From: EdLincoln
Is it the induced labour that is somehow connected to NLD, or is having a child significantly past due connected with NLD? I seem to have many symptoms of NLD (including a very large difference between the verbal and performance scores on IQ tests) but was not born through induced labour. However, I was past due, and was born through Caesarian section.
This is a response to the posts from peoople who say that the ir NLD child was past due, and the doctor tried to induce labour.
Yes, I recognize that untill someone does a statittical study on this, we
won't know if the supposed correlation between late preganancies, induced
labour, and NLD is coincidence. It is interesting, though.
Just curious...My son was born 16 (yes you read it right...16) weeks EARLY. My water ruptured prematurely and he was delivered by C section at my request (with the doctor agreeing due to the situation). His verbal IQ is 133 and performance 100. Maybe it's the anesthetic, I had a general with him.
Fortunately, he is an excellent student despite the discrepency in his
measured scores. He just has not so great handwriting, but is a great word
processor. He's now 12 years old. ShelleyHL
P.S. My daughter was also delivered by c section, five weeks early, epidural
only and she's a great garden variety kid...really even.
SUBJECT: Allergies Date: 97-04-25 16:25:22 EDT
From: LoMo4UBAH
I was interested in the posting on allergies. My son also was diagnosed at age 2 with asthma and is on daily medication. Allergies are environment related (ie no foods, etc.). Each time I read the new postings on this board I find another similarity or link. My greatest challenge now is to try to find local support or information. It's like solving a mystery.
SUBJECT:
Re: Only half awake Date: 97-04-26 23:58:27 EDT
From: Caitlin35
The big NLD conference was today-it was great-a whole room full of people
who either have or help NLD kids. We were all fascinated by dr. Schrier's
talk and especially videos on NLD kids and all the info on neuropsych that he
puts in...and it was fun for me to put faces to all the AOL friends like
Kevis and Grace2all and Lookheart! So many good questions to explore, and we
did an informal hands up survey with the people there, and found a HUGE
correlation between NLD and obsessive behaviors, also with unusual
sensitivity to some senses (some kids can't tolerate loud noises, or visually
busy environments, or certain fabrics...) Anyway, there was a lot more going
on-seminars on handwriting , social skills, diagnosis, education,etc.but
I'll leave it to some of the others to report!--Kathy
SUBJECT: Re:Allergies Date: 97-04-27 09:41:22 EDT
From: PeterCB55
Re: Allergies, preterm and term birth difficulties.
While it is interesting to consider the connections between allergies, preterm and term birth problems and NLVD, it is worth remembering that for many communities the overall rates of asthma and allergy related difficulties (according to some) are rising. This is particularly true for many urban communities, where allergy and asthma related problems (i.e., reactive airway disorders) are being identified as medical concerns with increasing frequency for all. In a similar fashion, I would urge caution with respect to the real or imagined significance regarding connections between preterm, term and post-due problems and the subsequent emergence of NLVD. NVLD at this point in time is a very useful "umbrella" concept, (i.e., one that pulls together a group of symptoms into a coherent framework). NLVD represents IMHO a useful way to describe a pattern of symptoms that are developmental in nature and selective in their impact. Yet, they have been associated with a diverse group of syndromes, including Asperger's syndrome, Cerebral Palsy, Wilson's Disease, Fetal Alcohol Exposure and Neurofibromatosis among other things. With so many differing types of disorders it is hard to imagine a single factor like preterm/term birth complications being other than a correlated factor. Our understanding of the mechanisms of injury and action remain, mostly conjectural and hypothetical. There are many possible causal pathways including genetic transmission, preterm insult/injury, and as a consequence of neurologic disease/disorder. Moreover, there is a body of evidence that recognizes a nonspecific relationship between identification of developmental learning disorders and the presence of birth complications. One notion has been that "trouble begets trouble". In short, "trouble" in or around the time of birth raises the possibility of subsequent problems particularly where development in general and learning and attention in specific are concerned. I hope this is usefull, I am sure that others might have additional thoughts on this subject.
Thank you Peter for commenting on this aspect. As we have multiple
possibilities in our son as to how he got to be the way he is (birth
complications, possible lead poisoning, genetic factors,etc.) we are aware
that to try to pinpoint causality is probably futile, and doesn't really help
the to understand how to help. We do try mightily to understand prognosis,
and that is the part which has been most confusing.
SUBJECT: oops Date: 97-04-29 13:22:30 EDT
From: RRoss27719
I didnt mean to suggest that anyone's child has vcfs, just to agree that there are alot of things that can result in nvld. VCFS is caused by a chromosomal partial deletion and ld has been connected to it, just as it was mentioned earlier that there are alot of causes of nvld.
SUBJECT: ready to go!!! Date: 97-04-29 18:34:13 EDT
From: Grace2al
Hi to all that I met at the conference. Sorry that i didn't get a chance to talk more. The video's by the psychiatrist were fasinating. My son has always had friends that are followers so they watch his ques or very outgoing( behavioral) kids. the idea is that(initial theory??) there non-verbal and verbal ques are so pronounced even my son gets them. The blessing is that he doesn't always get that he missed out. the only teasing that he's had was about the keyboard and he wrote a note saying that he can write and to leave him alone. His writing is beautiful but SLOW.
What resources are down in San Diego. I'm going to call ucsd tomarrow and see what studies are available. I'm glad that we're off the reasons for nld. the idea that while we are still concretizing the disorder/syndrome it's difficult to say. According to what I've learned the nld is not a large grp. therefore it isn't very valid to deduce that the cause is birth related. any insult/trauma or abnormality genetic/viril or benign or not can cause problems with the right hemisphere or as stated the connections between both. on to other subjects.
My son was also more than two weeks late and then delivered by emergency C-section. His initial Apgar score was three. So we knew from then on that there might be a problem. He also has asthma like symptoms sometimes, but I don't think that has been severe enough to cause any problems. However, I was hospitalized with severe breathing problems in my fourth month of pregnancy and I have often wondered if that contributed to the problem.
SUBJECT:
Copying from board Date: 97-05-01 11:12:06 EDT
From: CHSMom
Does the AlphaSmart Pro help with copying from the board? I requested one
from my district and they asked why it was needed if there is a notetaker,
and if he will still need a note taker to write down the homework and stuff
from the board/overhead projector. good questions. The more I think about
it, I don't know how it will enable him to take notes if he doesn't have the
cognitive ability to do so (this is high school). Thanks
SUBJECT: Re:Copying
from board Date: 97-05-01 11:40:05 EDT
From: Mars000210
Hello, I have two children who are using the alphasmart Pro. I can only speak from the difficulties my girls have which is dysgraphia and dysnomia. It helps them in that they are able to put thier thoughts down before they forget them (dysnomia/ short and long term memory problems, word retreval difficulties). Typing is faster then writing for them. They can type and not have to look at the keyboard, so the far and near point copying is inhanced.
They no longer lose their papers done at school, since everything they write
is in the alphasmart. Note takers are still needed because they still miss
information ( either what the teacher has said verbally or at times what is
written on the board, note takers fill in the blands so to speak. This
technolgy allows them to easily come home and put thier work onto a bigger
screen for them to view, so they have a better visual field to access thier
work without having to rewirite everything over and over again. Barb
It is not as if one intervention facilitates the process for us it is
several combined together that has made the difference. Barb
SUBJECT: Motor
problem help Date: 97-05-01 13:42:24 EDT
From: MGordon150
My son had his evaluation yesterday and one of the problems he has is "motor dyspraxia" or difficulty with motor planning, in addition to an extremely slow processing speed. It was recommended we find an individual sport for him to learn that didn't depend too much on speed or complicated body movements (i.e. karate wasn't recommended, Tai Chi maybe). Have any of you had success with particular sports or activities with your child?
Martha
SUBJECT: Re:Motor problem help Date: 97-05-01 18:38:46 EDT
From: PBTanguay
Since I don't know how old your son is, it's hard to recommend. We have had luck with swimming, archery, and kayaking. Our daughter is 12. We started the swimming when she was 3. She is now a strong swimmer, but continues to have some problems with a smooth freestyle stroke. The kicking, breathing, etc. continue to give her problems. But, she has developed a solid breast stroke, back stroke, and side stroke, and swims like a fish under water. The archery came at about age 9 and kayak at age 11. We selected these activities because they were not team sports (too much confusion and peer pressure), but required focus and practice. Our next activity will be golf for the same reasons. I'll be interested to hear what others recommend.
SUBJECT:
Re: Motor problem help Date: 97-05-02 06:12:12 EDT
From: Lookheart
My son has been taking karate for almost a year and it seems to work pretty well for him. Although he is 7, he has not moved up from the younger group because the teachers feel he cannot handle the increased intensity yet, but he is small so fits in OK. He learns the hand movements quickly, probably because of his rote memory, but his balance is off so he has some problems with the kicks. I like it for him because it is very structured and any time he drifts off or gets silly they stop it immediately. The instructors are pretty well tuned in to him and work very nicely with him and he particularly enjoys the individual lessons and attention he gets. It remains to be seen if it will work for him in the long run. He does seem to have trouble with the concepts of respect, which we constantly have to break down into what specifically that means. He is in his second year at soccer and may be his last because he gets especially silly when he is on the sidelines and not moving on the field. We tried tee-ball but stopped it this year because he would just throw dirt when he was in the field. He lked gymnastics when he was in a younger group but when he moved into the fbigger group and was on the sidelines he was too silly. As long as when he is not doing something and the teachers are able to work directly with him to pay attention, as now in karate, he can do OK.
I have a question. My son has problems with spacing on his papers at school.
His letters start very big on the left and then when he has no room on the
right he finishes the sentence or words by writing them vertically on the
page instead of horizontally. Anyone know what can be done to help
that?
SUBJECT: Re:Motor problem help Date: 97-05-02 12:43:58 EDT
From: KevisB
My son took a little bit of Tae Kwon Doe when he was seven. Really enjoyed it, but didn't continue because he wasn't ready to move to yellow belt from beginning white belt. This would not have been a problem except that he is so anxious about image that he did not want the other kids to know that he still was at white belt. He did soccer from fall of 1st grade through spring of 3rd, and loves actually playing it, but got discouraged because of the other kids' disparaging remarks on his skills. Swimming was very difficult at first; it was almost impossible for him to get the coordination on the crawl and back kick with the arms, but last summer he suddenly seemed to "get it" and is now a good swimmer. I have tried to interest him in joining a swim team, as this was my sport from age 8 to 20, but he is not really that interested.
He has done fairly well at skiing, though for financial reasons we can't devote that much effort to it. I guess at his age most of the others in his class are also falling down a lot, so his balance problems don't show up as much. Interestingly enough, with all the motor problems he has, he turned out to be a natural at flycasting, a sport I know nothing about, but which I had a good friend help him with.
We spent a lot of money on sensory integration therapy, but there was a post
in another folder regarding swimming possibly doing the same things as SI
purports to do. If that were the case, I would definitely push more on the
swimming.
SUBJECT: Re:Motor problem help Date: 97-05-02 12:50:21 EDT
From: MGordon150
Swimming is a sport we're probably going to try even though we haven't had a great deal of luck with it. Like many of you have said - my son (who is 9, almost 10 by the way) has difficulty with coordinating the movements. I've never seen anything like it. He moves all four arms and legs and says absolutely stationary! We were advised to avoid group sports, to get individual lessons instead. Hopefully this will improve things. We have tried Tae Kwon Do and Po Ko Lon (sp?) and ran into silliness problems too. It was very hard for my son to pay attention, much less have concepts like respect and discipline be conscious motivators throughout the time he was working. I liked the idea of learning kayaking and archery - two activities I hadn't thought about. How about cycling - my son hasn't learned yet - it's like swimming.
Martha
SUBJECT: Re:Motor problem help Date: 97-05-02 13:47:54 EDT
From: PBTanguay
MGordon - don't despair yet on cycling. Our daughter had extreme difficulty learning to ride a bike and was around your son's age when she was finally able to do so. With all our efforts, it was a neighborhood kid who actually taught her. Balance is particularly difficult, and they can't balance when they're going slow - viscious cycle. Just make sure he wears a helmet! Maybe this summer...
Also, on the swimming I agree you should have private lessons. A thought to consider - at first we taught our daughter kicking ONLY (once she could float), using a kick board. We had her practice it a LOT - different kinds of kicks. After probably a year to two of this we moved on to arms, and did only arms for awhile. A crawl (freestyle) stroke is particularly difficult, so you might try breast stroke to start. Once the separate kicking and stroking are solid, then try to bring them together. If he likes the water, you might try teaching him to swim under water first. It was easier for my daughter.
By the way, the first time our daughter got into a kayak, she was a natural. She told me it was because the kayak (a single) felt like it was part of her body. She felt it was easy to balance and control. Interesting, I would have thought the balance issue would be a problem, and it was just the opposite.
Since I can only swim to save my life, and have never been in a kayak, maybe
somebody out there can explain this better than I can.
SUBJECT: Re:Motor
problem help Date: 97-05-02 17:57:38 EDT
From: JKaac
For those with poor bike riders - have you tried a slight grassy hill? This seems to get the child going without worrying about getting the hang of pedaling - first just concentrate on maintaining balance then next they can coordinate pedaling. The grass softens the fall, but of course, they won't fall.....!
SUBJECT: Re:Motor problem help Date: 97-05-02 18:40:32 EDT
From: KathyCS
My son also learned to ride without training wheels on the grass.
SUBJECT:
Re: Motor problem help Date: 97-05-02 23:21:24 EDT
From: Caitlin35
We found horseback riding to be a good thing for our son, as it helped with balance, eye hand, posture, and general morale! Also our family plays a lot of bocce ball (with adapted rules), kayaking has been good the few times we've tried it, and we are thinking about golf, which he wants to try.
A question: does it seem like these kids have poor stamina compared to their
peers? Some of it may be our kids' medications, but it seems our son doesn't
have as much staying power as others his age....
SUBJECT: Re:Motor problem help Date: 97-05-02 23:21:51 EDT
From: Grace2al
had to laugh! my husband finally got tired of pushing our son around the
track and let him go across the grassy infield. it worked great. Swimming
wasn't that successful not for co-ordination as much as they used alot of
hand signs and you had to pay visual attention. so he'd get done with one lap
and not realize it was time to go back. He loves to swim and he can do it
well but would NEVER take another class. He loves archery and Kendo( japanese
sword fighting) full body co ordination and slow steps his teacher is great
and although he hasn't picked up the speed there are so few in the class he
gets the attention. Karate no go same as swimming with out the verbal there
is no learning. Golf works and the neurologist suggested pistols with some
humor of course. Husband and son are in Indian Guides its a great way to try
alot of sports, camp outs and have that social situation with a focus on an
activity so social lags aren't as noticed. the sports are basically archery
hiking, and canoes and kyaks. And this last time pellet guns was perfect and
all done in fun. it's grouped K-3 and 4-6 but due to age young 8 he'll stay
in the younger grp. one more year. Call the YMCA in your area for next sept.
sign-ups. sorry about the spelling but my comp. keeps kicking me off and I
wanted to get this done first.
SUBJECT: Re:Motor problem help Date: 97-05-03 03:14:16 EDT
From: MGordon150
Thanks for all the great advice! Sports has never been my forte and I didn't know where to start! It sounds like there is something out there that will eventually interest my son. Kendo! What a concept, I think my son would love it! Kayaking scared my husband since we have so many fast-moving rivers here in Oregon. Canoeing has always appealed to me. It would be nice to find something the whole family could enjoy. Hiking is of interest to my son as he is obsessed with animals and nature.
We tried the grassy hill routine with the bike. It might be time to try again.
One thing I found at our assessment was that my son did not receive the diagnosis of NVLD. Instead it was an Executive Functions Disorder, motor dyspraxia and probably Attention deficit disorder/inattentative type (which may be given after he has some counseling for depression). I still find our experiences most similar to those described on this board, so I hope I don't get kicked off : )
Have a good weekend. I'd like to hear more about the conference if any of you lucky people who go to go have more to say about it!
Martha
SUBJECT: Re:Motor problem help Date: 97-05-03 07:07:00 EDT
From: Lookheart
My son (age 7) does have an endurance problem, but loves to run and jump so I
am considering track in the future. He could be a good sprinter if he could
learn to have the patience to wait his turn. The grassy hill for the bike
sounds like a good idea.
SUBJECT: Re:Motor problem help Date: 97-05-03 09:57:23 EDT
From: ShelleyHL
My children both learned to ride a two wheeler on a VERY small two wheel bicycle. They were easily able to plant their feet on the ground, and there really wasn't any fear of falling because the thing was so small. I think it had 10 inch wheels, they are very small. But if it will provide security try it. I would suggest borrowing one from a friend with a younger child.
ShelleyHL
SUBJECT: Re:Motor problem help Date: 97-05-03 10:38:15 EDT
From: Lookheart
I found it helps to explain to the coach or instructor of whatever sport you
try the problem with verbal vs visual cues and if you find the right
instructor they will adapt their instruction to giving verbal cues, in our
case in karate, as opposed to visual cues.
SUBJECT: Re:Motor problem help Date: 97-05-03 11:09:07 EDT
From: Lookheart
Another thing I'd like to add is that my husband is starting karate with the same group and it helps my son to work at home with my husband explaining moves to him, since my son has a purple belt and my husband only has a white belt, and it gives him a sense of self-esteem and competition with my husband that he is higher than him and can help my husband to learn. I've seen recently that his moves do have more depth and they are not just fast rote moves as they were in the beginning. He is working on balance issues once a week in physical therapy and does have trunk stability problems which I asked his OT therapist if she was helping him with and she said talk to the physical therapist about it.
My son also takes swimming and loves the water but does have trouble getting coordinated and with endurance. I intend to keep him into swimming because even though it may be slow, anything that will help me and him feel he is safe in the water will be advantageous.
Any one have any ideas on my previous message regarding visual-spatial
problems writing on paper, i.e.<< I have a question. My son has problems
with spacing on his papers at school. His letters start very big on the left
and then when he has no room on the right he finishes the sentence or words
by writing them vertically on the page instead of horizontally. Anyone know
what can be done to help that?>>
SUBJECT: Re:Motor problem help Date: 97-05-03 12:38:34 EDT
From: Peggy 620
We also have had the same problems with our daughter (just turned nine). We started swimming (private lessons) last summer and she is now able to swim 4 lengths of the pool (75 feet each). Her form is terrible but her self-esteem is high and she can now go to swim parties like the other kids.
She also loves soccer (her older brother is an all-star player) so I think we will try AYSO this year, grouping her with younger players. She has done some track and field and loves to run but is slow and has poor endurance. I think it is one of those things (like the swimming) which improves with practice. We will encourage her to sun short distances and complete against her own times.
She also wants to try tennis but I doubt that it will be successful. Does
anyone have a technique for helping kids with poor visual-motor skills and
Peggy, if they are writing a sentence do you put one box per letter for each word in the sentence and is this a method the teachers should use in the clasroom or is it just something an OT or myself should do hoping it will generalize when he needs to write without boxes in the classroom:
Thanks, Sue
SUBJECT: Re:Motor problem help Date: 97-05-03 22:19:49 EDT
From: McCarthyA
Have you tried duck pins? My dyspraxic son is a whiz at this. As everyone
else has noted, swimming is one of the best sports for these kids. My son's
style is rather unorthodox, a bit like a dolphin undulating through the
water, but it makes him feel good and he has a good time, and we see
improvement in other areas when he is also swimming. We have our son in
kindergarten soccer and tee-ball. Its very low key, but I can see that his
abilities will soon be surpassed by the other kids'. If he wants to stick
with it we will but if he's uncomfortable with it, we'll move on. I think it
is really important to find one thing your kid can do really well, be it a
sport, music, art, building with legos, making really great science
projects, or whatever his special gift is and praise him to the heavens every
time he does it, and remark on how good at it he is. Sometimes we worry so
much about our kids' disabilities that we lose sight of their
abilities..
SUBJECT: Re:Motor problem help Date: 97-05-03 23:15:03 EDT
From: MommyMania
The idea of a very small bike was a good one-that's how we started, too. And
we didn't teach the pedaling right away, because learning that, and balancing
the bike, and steering was just too much at once. I've taught almost every
kid in our neighborhood to ride with this method. On a very small bike,
remove the training wheels, and teach the child to propel the bike forward
the way he learned to ride a toddler bike without pedals- just coasting along
alternating legs, as if he's walking the bike. Have him do this for a long
time, until he is able to balance and steer .It's actually sort of fun, and
he gets the feeling of "Wow, I'm bike riding!" without any stress, eventually
pushing off harder and going into a glide. Once he has become comfortable, he
will probably at some point try to pedal as he glides. I've seen kids go the
length of a block within minutes of pedaling for the first time. Feeling
comfortable on the bike, as if it's a part of them, is the key. Also, when
they're ready to pedal, running behind them with your hand firmly on their
back seems to give them confidence-maybe they don't have to worry about
falling, because you're right there. Last spring we taught a friend of my
daughter who was still unable to ride at nine years old. She learned in two
sessions-and she was almost phobic. It really works. Cindy
S
SUBJECT: Re:Motor problem help Date: 97-05-04 03:40:54 EDT
From: MGordon150
Regarding hitting tennis balls, etc. The occupational therapist that saw my son said that whatever sport we found, to make sure that everything was broken into small steps, and practice each step before putting the whole thing together. It seems that this is what is done in Adaptive P.E. classes, and makes sense.
Martha
SUBJECT: Structuring Free Time Date: 97-05-04 09:12:23 EDT
From: LoMo4UBAH
My 6yo son has great difficulty structuring his free time. If given his choice he'd watch TV all day...due to the fact that he has trouble making a decision. When I do guide him through choosing an activity, it can often last as few as 1-3 minutes (he is NOT ADD). He has an older brother who is tremendously independent, and a younger brother who he can play pretty well with. With summer coming I would appreciate suggestions. I want to guide and assist, yet is is unrealistic to think I can structure him all day long for three months. I have considered using a kitchen timer set to 15 minutes and after he selects an activity (ie playdough, swinging) he needs to stick with it this long. I've also considered putting our day on a fairly general but predictable schedule (ie a.m.=outdoors, read after lunch, video for quiet time....). Suggestions and feedback are GREATLY appreciated! You guys are the greatest!!
Lori
SUBJECT: Re:Structuring Free Time Date: 97-05-05 07:22:17 EDT
From: Lookheart
Lori, Structuring the day for our 7-year old worked for awhile and if you
have the endurance and flexibility to do it it may work for you. I just
found my day was too structured for me to deal with although it did work for
my son. It was suggested to me by his therapist that if he knows that a
certainn time of day is snack time or meal time then he won't be asking for
snacks all day or if he knows he can play with yyou at a certain time during
the day he won't be asking all day. That works up to a point because then
your schedule gets thrown offf for one reason or another. I'd certainly give
it a try. Now it's sort of a modified structure where if I find he's asking
for a lot of snacks I'll start with snack time eating only again, or if he's
watching too much TV, I'll go back to only watching a limited amount of time
or if he wants to play with me all the time, I'll tell him for 15 or 30
minutes and then you need to play by yourself. I can't say it works all the
time, but is something for me to fall back on. Sue
I would prepare paper for use in class as well as at home. Constistancy is
important. Use 1 letter/box and an open box between words (to learn
spacing).
SUBJECT: Re:Motor problem help Date: 97-05-05 13:16:55 EDT
From: KevisB
I agree about the bike riding on the small hill: we didn't even use a grassy
hill per se but a very slight grade and a wide asphalt path which was in a
park with grass all around. We had previously tried the grassy hill approach
but had problems with gopher holes, etc. What really helped with my almost 10
year old son was that he had recently received a Star Wars computer game
called "Rebel Assault." In the first part of the game you are a rookie pilot
training to fly an fighter plane, with 5 starts for each training session. He
went out to the bicycle path and did his "training flights" diligently with
5 starts in a series, then a break, then another 5 starts, etc. Because of
the asphalt, once he was started, he could go a long way without pedaling, so
he was really thrilled. We added the pedaling only when he felt really
confident of balancing, and only after his nonpedaling hill start. After he
could start without pedaling and start pedaling while his bike was going, we
finally added starting the bike by pedaling. We spent about six weeks of once
weekly training to get to that point.
SUBJECT: Re:Motor problem help Date: 97-05-05 19:00:46 EDT
From: RRoss27719
That is a great tip about star wars! My son loves star wars and this might
be the incentive to get him to try again. We have tried but without success
on his bike, he is easily frustrated. I read with great interest about the
problems all our nvld kids have with the motor coordination-----we are all in
the same boat. Thanks for the ideas!
SUBJECT: Re:Structuring Free Time Date: 97-05-05 21:04:10 EDT
From: LoMo4UBAH
Sue,
Thanks for the feedback. That sounds alot like what we do, but didn't know
if I was crazy to try to follow a skeleton schedule. Sounds like it works
well for you!! Thanks!
SUBJECT: Abilities Date: 97-05-05 22:11:20 EDT
From: JKaac
McCarthy, Thanks so much for mentioning concentrating on abilities. I work in the schools and often see parents lose sight of what their children do well. We all have skills and abilities that make us unique as individuals. Love your kids (which I know you all do, I'm not meaning to patronize anyone)
and teach them strategies for success in the future. As parents, we are all
raising our children to be successful adults.
SUBJECT: Re:Abilities Date: 97-05-06 09:05:58 EDT
From: Ratatat
<McCarthy, Thanks so much for mentioning concentrating on abilities. I work
in the schools and often see parents lose sight of what their children do
well. >
Yes, this does happen. I think we can all be guilty of this - concentrating on strengthening weaknesses all the time. Education has become so "prescriptive" and steeped in language that can foster focus on those weaknesses.
If we can focus on those things that our kids do well, and build on them, offering them opportunities to feel successful, commenting on the positives, etc., which in turn can increase their self-confidence and willingness to try more in areas that are hard for them, it would be great.
For example, I spent most of one year (my daughter's second grade year) having quizzes and tests sent home marked in green ink (like that was supposed to be better than red) with how many she got wrong at the top of the page. Never a positive comment. Nothing. Just -12 (out of 20), or -5, or whatever.
Each and every time one of these papers came home for me to sign, I would get out fun little stickers, and slap them on the paper; cross out the minus and write +8 or +15, then make a comment, like "WOW! Great Effort. I know you worked hard on this!"
I know that this really peeved the teacher for quite a while. After more than half a year passed she asked my why I was re-doing her scoring, etc. when I signed the papers. I told her that we needed to provide my daughter with as many positive views on her work as possible. And, that it was my choice to emphasis her effort and the answers she got RIGHT.
Well, lo and behold. A few weeks later, the papers started coming home with
+12 (or whatever), and Good Effort comments, etc.! It was a relief. I still
added my own. But, this small thing, really helped turn my daughter's
outlook around and gave her better confidence and courage when taking those
tests. And, with that, she did better and better.
SUBJECT: Re:Abilities Date: 97-05-06 13:41:41 EDT
From: Lookheart
I think the one of the main reasons I want to strengthen my son's weaknesses
is so he won't be laughed at and socially rejected by the other kids, he
really wants to be accepted and loves school for learning but every mean
thing a kid says to him hurts him so much. I don't expect him to be a genius
or the most popular kid in school but just to learn to get along in life
without depression and anxiety around people, which in the end will help him
succeed in his own way.
SUBJECT: Re:Abilities Date: 97-05-06 17:26:02 EDT
From: RRoss27719
Ratatat that is great! I love it! It is important to stress the positive as
much as possible. Thnx
SUBJECT: Re:Abilities Date: 97-05-07 07:46:00 EDT
From: Lookheart
Ratatat and others,
Didn't mean to slam or offend anyone. I know my son's strengths and
compliment him any opportunity I get and know teachers may also. It's just
so hard to get kids to focus on other kid's strengths and not their
weaknesses.
SUBJECT: Re:Abilities Date: 97-05-07 08:21:42 EDT
From: Ratatat
<Ratatat and others,
Didn't mean to slam or offend anyone.>
Lookheart.... I didn't feel slammed! You didn't offend me. I thought some important issues were raised. Actually, some core issues.
Thanks.
SUBJECT: just some thoughts Date: 97-05-07 17:04:26 EDT
From: Grace2al
I agree that we need to focus on the positive and we do. This comes up with diagnosticans also when they want to explain that they can do alot but have these weaknessess. Then you have to explain that your paying them to dx pathology deficits not strenghths. Its great that they try to balance it out but as much as we revel in our son's triumphs we are also commited to providing him with an enviornment which can accom. his difficulties.
we hit our first hurdle with him after the 504. Now he feels different and yet using the dream writer is the one aspect that the school feels the strongest on and so we get the most support. but there has been some kidding. He's much more compliant when the teacher modifies his work and not mom. He wants to do it all can't and then whines and gives up. "star shaped pegs" is wonderful but after reading the cover he won't open it This summer will be interesting. Reading over the differences between aspergers and nld there seems to be some significant differences. on the www pg for a.s. it has lack of language and high visual awareness the opposite of nld. Oh well. I'm off to get him in a moment.
I hope that all is well.
adios,
Kendall in Carlsbad,Ca..
SUBJECT: Re:just some
thoughts Date: 97-05-07 21:30:22 EDT
From: Willsons
A student of mine was "labeled" autistic. All adults directly involved with him now think it would be more accurate to say he displays Asperger's Syndrome. He is very verbal. He is well behaved and popular. His most noticeable, unusual characteristics are that, 1. he approaches people without introduction and begins talking about whatever is on his mind, and 2. when he is given information and then asked an academic question, it is apparent by his answer that he did not understand the intent of the question, or was unable to sort the significant from the supportive information. (He has unusual mannerisms as well.)
Could it be that there is confusion because of the word nonverbal? I understand NVLD to mean the child's problems may be due to faulty processing and consequently, in his manner of verbalizing, but not that he is nonverbal. Am I confused?
I wouldn't mind input from the rest of you!
SUBJECT: Re:just some thoughts Date: 97-05-07 22:26:55 EDT
From: Grace2al
nld kids/adults are very verbal that is there primary strength! It's the slow
processing and inability to pick up on nonverbal communication that is
problematic on a social leval. there are other things also but this is a
start.
SUBJECT: Re:just some thoughts Date: 97-05-07 23:08:18 EDT
From: Ratatat
< Then you have to explain that your paying them to dx pathology deficits not
strenghths.>
Actually, in my opinion, a comprehensive evaluation should diagnose the whole child - strengths and weaknesses. Otherwise, what real value is it.
Strengths and weakness are so inter-related I just don't know how one could
possibly report one without the other.
SUBJECT: Re:just some thoughts/reply Date: 97-05-08 10:29:24 EDT
From: Grace2al
Yes they need to evaluate all of it. But when you start to ask how to work with the weaker areas they say look at the strengths. Which we have done and continue to do. If my son had a beautiful singing voice but couldn't walk I would appreciate the recognition that he can sing but would want to focus with the "specialist" on how to help with the walking. that's all!!
SUBJECT:
Re: just some thoughts plus Date: 97-05-08 11:49:01 EDT
From: PBTanguay
<Then you have to explain that your paying them to dx pathology deficits not
strengths.>
Ratatat - couldn't agree more with your comments. Without an evaluation of the whole child, how can a program be developed to assist them? We use our daughter's strengths to help compensate for her weaknesses - don't we all? Also, THEY need to hear about their strengths. I think it puts all of us in the right frame of mind to come from the perspective of "the cup is half full - rather than half empty". Please don't anyone feel that my comments are patronizing, that certainly is not my intent. But it is easy for us to get caught up in all of our kids' problems - and for them also. I can't imagine that our daughter is any different from most of the other NLD kids out there. She used to come home and tell me all the HORRIBLE things that happened to her throughout the day (some with merit - others simply her perspective).
After beginning to dread the bus arriving at the driveway, I started a new
approach. Before she starts with the problems of the day, she has to tell me
three good things that happened - even if it was just that someone smiled at
her, or she understood her math. Then, she is free to vent. We've done this
for three years, and it works really well (she's 12). It keeps us both in
balance - well, most days anway.
SUBJECT: Information Site Date: 97-05-08 18:39:39 EDT
From: Willsons
I don't think I've seen this site posted here and thought some of you might apprecitate knowing about it. It has a wealth of information.
http://www.udel.edu/bkirby/asperger/
SUBJECT: Re:Motor problem help Date: 97-05-09 05:53:47 EDT
From: Lookheart
My son, 7, is currently having a problem with soccer. He just doesn't get it
and acts silly etc, but still wants to go? Do we stop him and have him
experience another failure or do we keep bringing him to the practices and
games and "hope" he will "fit in"?
SUBJECT: Re:Motor problem help Date: 97-05-09 07:48:37 EDT
From: Ratatat
<My son, 7, is currently having a problem with soccer. He just doesn't get
it and acts silly etc, but still wants to go? Do we stop him and have him
experience another failure or do we keep bringing him to the practices and
games and "hope" he will "fit in"?>
If he likes it and wants to go, let him. Maybe you can have a chat with the coach and work out a reward system if your child can cut the silly act - start with small improvements each practice until he can make it through the whole practice/game with proper behavior.
Both of my kids play soccer and have since they were very young. They are now 14 and 17. It seems to me that it takes until almost 7-8th grades before the kids can really play what is called soccer. Before then it's more like what I call "Bee" ball. Since the kids have not concept of position on the field the ALL chase the ball everything looking like a swarm of bees!
Seven is really young. As long as he's having fun, enjoy it. Remember, it's
just instructional, and way to socialize and burn off some energy. This is
way too young to get serious. Hopefully, the coach sees it that way
too.
SUBJECT: Re:Motor problem help Date: 97-05-09 10:23:20 EDT
From: RRoss27719
Lookheart, I know exactly how you feel. My son always wants to join the
team and is very silly too. He is now 8 and I have seen great improvement in
his behavior (knock on wood). For my son, I think there are alot of reasons
for his silliness. One reason is his inability to interract properly in
unstructured social settings, and the other is his weakness in sports in
general. Sports activities rely heavily on both these areas, therefore, he
reacts with silly behavior out of insecurity. We always anticipated his
silliness and would 'coach' him on appropriate behavior, and praise him for
acting appropriately. Lots of times we would have to get right in his face
and tell him that he isnt acting appropriately. It is important for you to
anticipate when he might act silly and role play with him before hand. It's
I informed my son's resource teacher and school psychologist that I will be getting an independent evaluation for him. I told them that it was for our shared information as he does not have an actual diagnosis of his learning problem. I asked what testing they will be doing for their 3 year comprehensive exam, as I did not want to invalidate any of their testing, such as the WISC III. The psychologist called me back and said, "Well, if you are going to get an independent evaluation, you should have him evaluated with whatever will give you the best answers. Don't worry about what we will do because we will not duplicate any tests which have already been given, and we may choose not to assess in areas which you already have test results." I know that she is a very good psychologist, and I was looking forward to also having her complete evaluation as well. All I want is a second opinion, and especially in the area of how to write his IEP. But I don't want to have the district NOT do their own testing, at their expense.
Do they have a right to base their evaluation only on my independent
evaluation?This is his 3 year comprehensive evaluation.
SUBJECT: Re:Motor
problem help Date: 97-05-09 13:24:37 EDT
From: Wtree5
regarding sports etc. : has anyone tried "jazzercise", or some form of aerobics or dance classes which would combine movement with music. I think music and its reinforcement of background rhythms to help coordinate movement, combined with the excercise element might be helpful (and fun).
We play a backyard ball game we have dubbed "bigball". It's basically
baseball, played with an oversized plastic bat (about the same proportions as
Fred Flintstone's club) and a 12" diameter airfilled rubber/plastic bouncey
ball. No one is afraid of the ball, and it's easy to hit. We modify the
rules to suit ourselves: Everyone on the infield team gets three turns at bat
and then out to the outfield; runs are counted, but not outs. If you're
"out", you just go back to home to wait your next turn at bat. We don't
count strikes or fouls; you are up at bat until you get a hit. It is great
fun. Even good ball players love it.
SUBJECT: Re:Motor problem help Date: 97-05-09 15:02:41 EDT
From: Lookheart
RRoss, Thanks for your suggestion but we have tried talking, repeating back
and role-playing and he acts perfectly with us but get him into the situation
and it is totally different. My husband is assistant coach and therefore
responsible for the kids on the sidelines and finds it hard to correct my
son's behaviors with the taunting and teasing in the background going on from
the other kids. He finally told them to shutup. I don't blame the other
kids, regular kids are regular kids just as NLD kids are NLD kids. At any
rate, at this point we are hoping to positively suggest something to replace
soccer. I always thought dancing would be good, my husband feels differently
being the sports addict that he is; but really want to find an outside sport
so again back to the research. Archery and horseback riding may be too much
for him at his age, but I will keep searching.
SUBJECT: Re:Independent
Evaluation Date: 97-05-10 07:37:21 EDT
From: Ratatat
<Do they have a right to base their evaluation only on my independent
evaluation?This is his 3 year comprehensive evaluation.>
Both the initial and the three-year re-evaluations MUST be comprehenisve, done by a multi-disciplinary team, and assess all areas that can impact a child's learning - and, one member of the team must be a specialist in the area of identified (or suspected) disability.
If your independent evaluation meets those criteria, then, yes... they can accept it as the triennial re-evaluation.
But, remember, at the time evaluations are to be done you have to sign a consent form. You do not have to sign a blanket consent form. You should never, in fact (my opinion). You can ask that they specific each test measure they plan to use and why, on the consent form before you sign it.
Also, you should know that the school must accept the information from an evaluation done independently as long as the person who administers it meets the states criteria for doing so.
Depending on who your independent is, you may, in fact, what the independent to only a certain portion of the triennial - like the psycho-educational batterly, while the school does assessments of all aother areas. I think parents have a tad more control over the reports from an independent. Just make sure you find someone who knows how to translate their findings into educational programming and recommendations for accommodations.
A school district absolutely must listen to the results of independent evaluations and CONSIDER them as part of the decision making process. Your previous posting sounded like the schools must ACCEPT the independent evaluation alone. It is essential that all evaluations be discussed and considered at planning meetings, both in-house and independent. Decisions should be based on all information available. However, one evaluation would not necessarily eliminate all others presented, unless the team agreed that it was the best representation of the child's profile. ShelleyHL
<A school district absolutely must listen to the results of independent
evaluations and CONSIDER them as part of the decision making process. Your
previous posting sounded like the schools must ACCEPT the independent
evaluation alone.>
Right. Thanks for making that clearer. It is what I meant to say.
SUBJECT:
Dysnomia?? Date: 97-05-11 11:07:29 EDT
From: Grace2al
I should have a definition of this by now but don't. I was reading on the dysgraphic board and this came up. On my sons testing it states"He has difficulty retrieving infomation even when is appears to be present in his memory." is this dysnomia. Because NLD is still relatively unknown although my son's school has been extremely open to what I've brought in clarifying the specifics with less obscure dx may be helpful. Also he likes being dysgraphic vs. having an nld what ever works. oh well HAPPY MOTHER'S DAY to all.
<<Both the initial and the three-year re-evaluations MUST be comprehenisve, done by a multi-disciplinary team, and assess all areas that can impact a child's learning - and, one member of the team must be a specialist in the area of identified (or suspected) disability.
If your independent evaluation meets those criteria, then, yes... they can
accept it as the triennial re-evaluation.>>
My problem is that the school district has qualified personnel that I do feel do good assessments as far as diagnosing strengths and weaknesses. I would very much like their opinions. However, they have not been as good in the prescriptive area, due to lack of experience in my son's area of disability. Also, the school psychologist, while very good, is also one of the "gatekeepers" for distribution of funding, and although she would never talk about money at an IEP meeting, I feel there is some bias there.
My plan had been to have him evaluated independently in the summer, to avoid the stress of having two separate evals in the fall. I really wanted a second opinion, in order to give a stronger basis for recommendations for services and accommodations he may need. In the past, I have had educational therapists go over the school district's testing results and reports, in order to make specific recommendations, but I think that they have needed more time working with my son and actually doing testing on him to get a better sense of his abilities.
I guess I could wait until the district does their comprehensive, and then have my independent done, but they are not planning to test him until September.
He is classified as "SLD" on his IEP due to the discrepancy between his standard scores in written expression on the WJ-R, and his VIQ.
<< <I guess I could wait until the district does their comprehensive, and
then have my independent done, but they are not planning to test him until
September. >
Why is that? Is this a triennial review? What is the date of his last
IEP?>>
Yes, it is his trienniel and his last IEP was Nov 5, 1996. However, the first IEP he had was May 12, 1994, with goals and objective to be developed within 30 days; the goals and objectives meeting was held October 6, 1994 and IEP finalized. The next year IEP meeting was held Oct 19, 1995. Due to scheduling problems (parents) this past year the meeting wasn't held until November 5. So the deadline keeps being missed by a little every time. When is his IEP meeting legally supposed to be due: May 12, October 6 or November 5?
<However, the first IEP he had was May 12, 1994, with goals and objective to
be developed within 30 days; >
This is the first problem. The G&O are supposed to be designed AT the IEP... actually, they ARE the IEP (in many ways). Why the 30 day delay?
And, every student who qualifies MUST have their IEP finalized the the beginning of the school year.
< When is his IEP meeting legally supposed to be due: May 12, October 6 or
November 5?>
Good question. I don't know, especiall since the first IEP timelines were blown and were legally out of compliance. I believe it's supposed to be the three year anniversary of the first IEP. Maybe you meet the multi-disciplinary team met on May 12? and the IEPC wasn't convened until October 6? In that case the IEP anniversay is October 6.
Actually they blew the 5/12 meeting. It was supposed to be a meeting to go over testing with the psychologist. No one had thought that he would qualify for special ed services. The meeting was held with me, my husband, the school psychologist, and the classroom teacher. I think we were going to decide on some classroom modifications and informal assistance from the RSP program. At that meeting it suddenly became apparent that he did qualify for services. Because all members of the IEP team were not present at the meeting (because they didn't know about it) goals and objectives were to be developed within 30 days. I don't know WHY the psychologist indicated this meeting as the initial IEP, as knowing what I know now, it was totally out of compliance. I think the reason he did mark it so, was that the qualification aspect was determined at the meeting. When the IEP team was convened on Oct. 6 it was listed as a requested review. It was convened with the new (to us) school psychologist and new resource specialist, plus current classroom teacher and us.
The same resource specialist and psychologist are at the school currently, and I feel we have worked fairly well together so far, so I do not want to make an issue about the dates just to make an issue, as I don't think it will be helpful. But what you say about children eligible for IEP's having one in effect at the beginning of the year is interesting-I thought he did have one in effect at the beginning of the school year, which is still the one from 11/5/96. Does it go out of effect in the summer?
Back to my real question, though. There are two issues that I am concerned about for his next IEP: 1. qualification (at his last IEP the psychologist expressed a view that he might "test out of" qualification) and 2. getting a diagnosis and useful professional opinion on appropriate services and CAMS for him to help write the goals and objectives for next year. I really wanted to do this without getting into a fight with the school district over who pays for the independent eval, as I am perfectly willing to pay for it. I just want to make sure that I get their comprehensive evaluation as well.How can I best accomplish this?
( Even though I know it is my right to have the district pay for an independent evaluation, if I disagree with theirs, I don't want to push as I know their resources are stretched and my son is achieving above grade level with accommodations. I am also trying to get him into the gifted pullout program for next year.)
Kevis
SUBJECT: Wording of CAMS Date: 97-05-14 16:58:05 EDT
From: CHSMom
Had another frustrating IEP for my 15 year old son. I had mailed them a list of CAMs i wanted, so they had time to go over them. I got the feeling that no one has ever asked for these things before, and they had never heard of them (?!). They didn't kow how to word them to cover all situations and the legal requirements. One that gave particulat trouble is: My son will be graded on work completed. Their point was that that was very broad. If it was a three question exxay test and he wrote only one line, that wasn't adequate. I gave the example of him taking the initiative of going to the resource room to type the test, worked hard per the resourse teacher the whole time, but could only finish 2 of the three questions. He received a 0 on that question. Anyone know how to word this properly? Fortunately, I am able to read body language and nuances. I cried all the way home.
SUBJECT:
Re: Wording of CAMS Date: 97-05-14 18:24:30 EDT
From: Mars000210
Hello, with my two girls are graded according two criteria: if the work is an in class assignment that is passed in without comming home then they are graded only on the work completed, if the work is brought home they are graded on the full assignment as the other students, Tests are graded on the the full test being completed, if they complete it in the class time allotted that's fine, but if they did not complete it the test is finished at home on the honor system ( me and dad are monitors) or they finish it at a later day or time at school. We found this worked well as the girls then didn't feel pressure to complete the test or classwork in any given time period.
I wouldn't worry about how to word the intervetions. Let the school do that. As long as you both agree how they wrote the interveniton explains the intervention in detail to your satisfaction.
Don;t get hung up in the termenology. Don't worry about thier body language. Keep yourself focused. Discuss one intervention at a time complete it then move to next interveniton. Make your interventions simple and resonable ( the above intervention is resonable). Ask yourself will this help my child and does it relate to his disabiity ( this gives you basis to argue you need for this intervention).
I know this shouldn't count but I keep in mind how busy the teachers are and all my interventions do not require a lot of man power, so they are as easy to do as i can make them. This has always been a nice selling point. Easy for you easy for us works for child. I wouldn't hesitiate to request something less easy if it was needed.
Just to let you know have used more Klenex then I should have. So dry up
those tears and smile. Just go back in and try again. I figure this way I am
not going to let my child slide by without a fight. I keep to my notes and
when we disagree if I'm not sure if I'm right or they are I tell them I don't
agree and need to think more on how to handle this problem. Then I go home
and make phone calls to everyone and their brother till I know the right way
to handle the problem. I've been wrong a few times and that happens. HOpe
this helps. Barb
SUBJECT: Re:Wording of CAMS Date: 97-05-14 18:39:16 EDT
From: SuZQ0321
An add-on to your IEP should list appropriate modifications. This is wording I have used for a number of students w/NLD: "The school staff working with [the child] will 1). base grading upon completed assignments, tested knowledge of the subject, and effort. [The child] is not to be penalized for incomplete assignments. [The child] will be meeting the same academic standards as his classmates - the method of measuring these standards has to be adjusted to account for his/her nonverbal learning disabilities."
This is where staff inservice training becomes so important (be sure this requirement is included in your child's IEP). Teachers must be able to determine the goals of their assignments and whether or not this particular child has met these goals (whether or not all assignments have been completed). This is more difficult for some teachers than others. Hope this helps. :-)
SUBJECT: Re:Wording of CAMS Date: 97-05-14 23:02:33 EDT
From: CHSMom
Thanks - that is basically what I said. Then they said, you mean if he writes on sentence that's all he has to do? We never get to discuss anything, then they tell me my time is up, and nothing gets accomplished. This time, they even ushered in the next family while I was there and told me I had to leave! I know all the shoulds and coulds and can'ts, etc., but those don't help my son. I understand what you're saying about body language, but they are definitely sending me a message - if your child can't do they work in the general ed classroom, he needs to be in a Resource Room. Actually, they have told me this. My contention is, that may be, but you haven't even tried. So now I am trying to get ahold of the Director of Special Education. I haven't even had a chaance to bring up inservice. When I told them he coulnd't cognitively do what they want him to do, the resource teacher said, "Oh, it's cognitive. I thought it was these other issues." (Scream). sorry for the babbling.
SUBJECT: Re:Wording of CAMS Date: 97-05-15 00:47:06 EDT
From: Mars000210
Your not babling. Request another meeting tell them how much time you will need to address the issues. Don't let them assign you a certain amount of time if you think you need more. I have requested up to 2 hours of time for each of my kids meetings when I thought it was needed. Try and not pay attention to the body language in relation to how it affects you. Pay attention to it, but don't let them overwhelm you. When I read that negative body stuff I just think two can play this game. I smile back and say, I think your wrong and I won't agree to that and then I tell them why I don't agree and why it won't work. Then the ball is in their court. Back up your argurments with facts. Anticiptate what they will say. Remember they read you also, but many times they are not prepared for your questions. Make them back up there suggestions with facts related to your child specifically not the general population. I back my arguments up with my kids work. when they said they finish their work and didn't need more time I pulled out a years worth of their work and said here's my proof they don't, where's yours. Your argument if I get it, should be: The school is not doing the proper intervention so my child can't accomplish the work done in the class room, and until they try the intervenitons you requested how can they suggest a more restrictive enviorment such as resource.
It helps if you know that the school system does the interventions you requested at other schools in your district or state. I found calling the the head of special education and say I want this for my child is this resonalble, do they do this at other schools. Also call your OCR for your area. Ask the OCR is this a reasonable intervention to ask for and what if the school refuses to do this intervention how should I handle it. Tell him the whole story of the IEP meeting. There are great people out there who will tell you how to handle the meeting. I use there advice and names to back myself up at IEP meetings. Call your local Learning Disability Association/ Your Potection and Advocacy Agency. Get more information before you hit the next meeting.
My last thought is to try to avoid saying my child can't do this. Try to say instead: he can accomplish these goals with this interveniton.
Sorry I ramble too. Have been where you are and know will be there again.
My meeting is next week. Sigh! Just keep focused. Remember you can always
request another meeting at any time. Barb
SUBJECT: Re:Wording of CAMS Date: 97-05-15 05:40:22 EDT
From: Lookheart
Had a lot of problems with my IEP meeting too, took me a week to work myself
up to it and a couple of days to get over it. Everything is still up in the
air, but glad to have these messages to refer to when we try to resolve the
<I really wanted to do this without getting into a fight with the school
district over who pays for the independent eval, as I am perfectly willing to
pay for it. I just want to make sure that I get their comprehensive
evaluation as well.How can I best accomplish this?>
I think that once you've decided who is going to do the evaluation, you should have a thorough and complete one done as possible. If it happens to provide all the information needed for the school team to use for their decision making process, they then can accept it and choose not to proceed with any additional testing. They can, however, choose to fill in any gaps for information they believe they need to make the best educational decisions for your child. The main thing is to avoid using the exact same test measure, especially for IQ, within a 12 month period.
Your child's educational program needs to be designed to meet his unique needs. If you have a child who is gifted and LD, or gifted and ADHD, and because of the giftedness is achieving at or above grade level, that does not mean that he doesn't need special support. All children are supposed to be assessed according to their individual potential, not according to what "average achievment" is in a classroom. If you child is highly gifted and is not performing at the level one would expect for a child with his/her abilities, then he needs to be supported appropriately in order to do so.
If you don't know what they are, you need to find out what the "formula" is
in your state for determining eligibility for special education. If, by
chance, your child doesn't meet the specific criteria, yet has a diability
that is still causing a signficant impact on his ability to achieve at
expected levels according to his individual potential, then you shouuld be
able to get the supports you need for him under Section 504 law, and build a
Thank you Ratatat for your very helpful comments. I will go ahead with my eval; what you are saying is basically the same as the school psychologist told me: "Get the evaluation that will best answer your questions, and we will work with it."
I do have the qualification formula for SLD; it is very bizarre and hard to understand. Also, it depends on a specific difference between ability and achievement. His ability is arguably NOT his FSIQ as that score is affected by his LD. So I really need my evaluation in order to help argue what is ability truly is. Alternatively, he might be better in the OHI category, and if not there, we will get a 504 plan.
Anyway, thanks again for your advice. I will go ahead and start making
appointments for summer testing. Kevis
SUBJECT: VCFS/NVLD Date: 97-05-16 22:15:56 EDT
From: MLADJA
My Son has been diagnosed with Velo-Cardio-Facial Syndrome which is associated wtih non-verbal learning disorders (among many other manifestations). I have just completed reading the previous messages (yes! all of them!) and am grateful for ALL the wonderful information that has been spawned from your dedication and expertise. I am still struggling to understand the non-verbal world but will continue to monitor all your input. Thanks!
Maureen
SUBJECT: Re:VCFS/NVLD Date: 97-05-17 09:46:59 EDT
From: Grace2al
Hi ! When I found this board I did the same thing and printed out the posts with references ideas and IEP wording. My son has a 504 for now and we'll see how it goes next year.
I always chuckle knowing that we've arrived at the NLD board once we're past
the teacher's depression:) Again our school is wonderful and now that we have
a course and info we're trying to allow it to sit in the background. Looking
forward to summer.
SUBJECT: IEP meeting Date: 97-05-19 19:21:47 EDT
From: Lookheart
Sad to see the message board so quiet. My IEP meeting was last monday and is
still a disapointment. They just don't get it, or want to try. I don't know
whether to be sarcastic and negative in my comments to them or take them to
court, I guess my lawyer will tell me the facts. I don't want my son to fall
through the cracks but it appears he already is falling and no one there
I'm with you Lookheart - the message board is quiet. We're probably all going through the same end of year planning, and it's a lonely feeling. Our meeting is on Thursday, and I feel a bit like Pavlov's dog right now - meeting with the school, panic time! I wish it didn't have to be this way, but all we can do is keep up the good fight like CHSMom said.
SUBJECT:
Summer!! Date: 97-05-20 16:55:34 EDT
From: Grace2al
Talk about feast or famine. Looking forward to summer and less focus on of the negative in school. I'm trying to open up the dialogue and discussion on NLD and dysgraphia. The dysgraphia is easier as it's one thing that is already overtly being addressed. What are some other books for kids that might help. I have the Star Shaped Peg book(it's great) but something alittle more kiddish. The meetings aren't easy I sympathize. We'll meet with his 4th grade teacher prior to the start and go over the NLD and how to work together. It's as he gets into the math next year that it will get tough.
Hope this helps feed the board. Also where are people from I know some but not all! We're in Carlsbad yes site of the new Legoland oh boy.
SUBJECT: Re:Summer!! Date: 97-05-20 20:41:42 EDT
From: Lookheart
Grace2al: I heard something positive about dysgraphia recently. I took my son to a private school for an evaluation and the teacher said that smart kids often don't write well, this was in reference to his poor number formation, and that is because they are in such a hurry to write the answer they don't care how it looks. Also, I was told my son, 7, was at the third grade level in math. We had been trying to get a math eval at his public school but the teacher stopped when she saw how poorly he wrote his numbers.
How differently teachers look at things.
SUBJECT: Location Date: 97-05-21 08:29:52 EDT
From: PBTanguay
To keep the ball rolling - we're from Tolland, CT, which is in the
Northeastern part of the state. I too would like to know where our BB
<<Grace2al: I heard something positive about dysgraphia recently. I took my son to a private school for an evaluation and the teacher said that smart kids often don't write well, this was in reference to his poor number formation, and that is because they are in such a hurry to write the answer they don't care how it looks.>>from Lookheart.
I am sure that this is sometimes the case, but it is definitely not true of my son. He struggles with the writing itself, and is slow in the extreme. His problem is he can't store the answer in his short term memory long enough for the protracted, slow writing. So then he has to go back to figure out what the answer he was supposed to be writing was, and then back to the slow writing, etc. Very laborious.
Given any kind of computer math program, where he has to just push a number, he is fine.
Kevis
SUBJECT: Re:Summer! Date: 97-05-21 13:23:36 EDT
From: KevisB
On a light note, I wondered whether anyone saw the news item yesterday about injuries to the right hemisphere causing "gourmand syndrome" in which someone who was an average, normal eater who ate whatever was served before the injury, became obsessed with gourmet food and fine dining after the brain injury. I had a laugh about that one, with my very picky eater in mind! Kevis
SUBJECT: Re:Summer! Date: 97-05-21 13:36:30 EDT
From: Lookheart
KevisB, not sure what to make of the writing difficulties my son has, I will
have to look at his sentences he writes in school to see if I can figure out
if it's a short term momory problem or not. That is funny about the
"gourmand syndrome", my son is also very picky.
SUBJECT: nld Date: 97-05-21 20:17:37 EDT
From: Lookheart
I'm beginning to feel like I just don't cut it on this message board, things
are too lonely for me now with all my other supports leaving, I guess I'm
just another mother with a diagnosis for a child and I don't want him hurt
but who cares?
SUBJECT: Re:nld Date: 97-05-21 21:12:21 EDT
From: Ratatat
<I'm beginning to feel like I just don't cut it on this message board,>
Look, please remember that this is a very busy time of year for most parents
and teachers. May is absolutely the worst time of month for me to find any
extra discretionary time. The school has every minute packed. I bet I'm not
the only one who's stretched a little thin right now.
SUBJECT: Re: end of year Date: 97-05-22 01:43:38 EDT
From: Peggy 620
Ratatat said it all. We are all extra busy now, but it will calm down as soon as school is out. I'm in LA.
Regarding our method of compensation for our child's dysgraphia: our third grader uses a laptop computer for "100% of all written work" and a lot of drawing as well. She gets 100% on spelling tests when using her laptop which incidently was paid for by low incidence funds (State money). It only took 18 months of fighting the school district to get it!
SUBJECT: Hello, and a sigh.... Date: 97-05-22 17:03:39 EDT
From: LoMo4UBAH
I am guilty of being one who has not posted in ages...I have not even visited the board for 1 1/2 weeks!! Part of the reason is the final push I have had to make on behalf of my son. Those who thought they could put me off have found an impatient mom who has meticulously documented EVERY conversation since October (yes, we began our struggle for servic3es in OCTOBER!!) Finally the testing is being wrapped up, and IEP date has tentatively been scheduled for the last week of school...meaning, I guess that they WILL find a way to have him qualify for OHI. I had been repeatedly told it did not appear he would qualify for services...my, how things change when we are armed with information and perseverance!! I had a LONG meeting with the administrative team to discuss exactly what I wanted for first grade, and found them favorable to what I was asking. Finally I am taking the last few weeks of school to sketch out our goals for the summer, as I want to have some sort of "lesson" every day (though I can hopefully keep things fresh and creative enough that Alex will not know we are doing "work".)
Also, I am sad to say that I have neglected the boards because sometimes it just gets overwhelming. Some days I don't want to think about the difficulties and the struggles...when I sign on I know I will see encouragement and support like none I could find elsewhere...but I must also face the hardships. For those of you feeling lonely..don't give up. We're all here hovering and I'm sure we'll be GANGBUSTERS in the summer when the kids are home for three full months!!!
Good luck to all the great teachers out there as you wrap up the year, and my prayers are with the parents, who, like I, still face more meetings before the summer.
Lori
SUBJECT: Re:Good news for a change Date: 97-05-22 18:44:57 EDT
From: PBTanguay
Since this is a hard time of year for many of us going through the end of year "junk" oooops, I meant planning, I wanted to share a success.
We've had a diagnosis for many years, but always felt that the school was patronizing us at best, and trust me, you don't want to hear the worst. Our current case worker is the Assistant Principal and has just read Sue Thompson's book. We met with the Superintendent and Asst. Principal today and got (so far) everything we asked for, and stuff they are throwing in that we didn't. Including...trumpets blaring...agreement to have Sue Thompson do an in-service for the staff in our school system. Didn't blink an eye when we asked - thought it was a great idea. And we're in CT and she's from CA. So, I'll be sending an e-mail to Sue, but wanted to publicly thank her again for writing such a wonderful book. Just think of each child whose life is changed by your book Sue, and the parents who are eternally grateful. Our school is also calling Pediatric Building Blocks to order additional copies for other staff members. And each of our daughter's next year teachers will read it over the summer. What more could we ask for?
I'm not naive, and know that there will be problems to address (we're still trying to get some resolved right not), but this was a real high and wanted to share it with all you guys out there. Our fight has been going on for six years, and today we hit a home run! Hope some of you hit a home run too this year, but if not, keep up the good fight. It's worth it.
Pam
SUBJECT: yes I'm just eves-dropping Date: 97-05-23 10:10:50 EDT
From: Grace2al
I'm checking in daily but not writing much. We recieved the last home work packet of the year I think I was happier then my son. Last spelling test and closing up shop. working on him understanding his needs and accomadations is the main goal for summer and secondly to increase his typing speed. He's been in it now all year and it's getting better, up to eleven words a minute. Off to school Taylor says" I use a dream writer that I type on, my hardest thing in school is the math because it is hard to add high numbers and to carry. This summer I want to go to Disneyland and swim in my pool."
Mom says is there a way that we can get the kids to "chat" on here or
somewhere, so that they can share and support each other.??
SUBJECT: Re:Good
news for a change Date: 97-05-23 10:35:00 EDT
From: CHSMom
Congratulations!!
SUBJECT: Re:yes I'm just eves-droppin Date: 97-05-23 10:54:05 EDT
From: PBTanguay
I think it would be a great idea if the kids could chat. But I don't know
how to set up. Post here if something can be arranged.
SUBJECT: Re:yes I'm just
eves-droppin Date: 97-05-23 11:37:58 EDT
From: KevisB
How about a separate folder for kids messages, just like we have here.
Kevis
SUBJECT: Re:yes I'm just eves-droppin Date: 97-05-23 17:12:14 EDT
From: Lookheart
My sonhas talked e-mail to PBTanguay and loved it, I did the typing but he
couldn't stop talking and loved the responses so he's sure to love a chat
with kids.
SUBJECT: Re:yes I'm just eves-droppin Date: 97-05-23 22:41:29 EDT
From: Ratatat
<How about a separate folder for kids messages, just like we have here.>
In a number of forums I regularly visit, folders just for kids have been
established. It takes about one nano-second for it to be taken over by
adults. Kids do LOVE to send email and do IMs. Posting in message folders
doesn't seem to work.
SUBJECT: Re:yes I'm just eves-droppin Date: 97-05-24 08:30:31 EDT
From: Lookheart
Yes, I agree, the time my son loved it it was an IM. Does anyone have a 7-year old to be a buddy for my son?
SUBJECT: I should know this?? Date: 97-05-26 10:06:35 EDT
From: Grace2al
With summer almost here. We need to get a typing program to use this summer. He's eight and going into 4th grade. So it needs to be fun but not "babyish", He wants it to have games. Any suggestions. I know what seems great in the store may not be as useful or very useful and not fun.
My son says he'd like a pen-pal also for the summer. His screen name is IJ007. So Larkhart here's one. Also if there are a few it gets to be alot of fun.
SUBJECT: Re:I should know this?? Date: 97-05-26 11:44:25 EDT
From: PBTanguay
The typing programs that our daughter has used are pretty visual. If your child can't handle visual, then throw out my thoughts. But we've had like with Mario Teaches Typing (Interplay) and I understand there is a new version out. It's fun and Mario talks to the kids. Also Typing Tutor 7 is very good (Davidson). I think that your child could handle either of these. But there is also Kid's Typing (Sierra) that is for kids starting at age 4 which might be worth a look. The school uses a program called Sunburst which is pretty boring, but my daughter did pretty well with that also, but only after using some of the other more fun programs. But it is probably better for older kids. Hopefully others will have additional suggestions for you. Good luck!
SUBJECT: Re:I should know this?? Date: 97-05-26 14:03:20 EDT
From: Lookheart
Grace2al - so caught up in school dilemmas at the moment can't follow through with the pen pal stuff until last week in June or first week in July, but definitely will give it a try. It's been a while since he's been online so I forget his online address but will let you know. Sue
SUBJECT: Re:I should know this?? Date: 97-05-26 19:47:37 EDT
From: KevisB
Re typing programs: I went to a seminar at the Center for Accessible Technology in Berkeley, and their opinion was that therer is not a good computer program available to teach kids typing per se, but there were several programs which could be used to assist typing practice AFTER touch typing had been learned by another method. Some of these were Key Words, SpellDodger, UltraWriter Manager, KidKeys, and Story Weaver. They taught me how to teach typing via the Herzog method. This is a very logical method available from Herzog Research, 1433 E. Broadway, Tucson, AZ 85719, phone (520)792-2550 or fax (520)792-2551. I am trying to get our school to start teaching typing this way instead of using Mavis Beacon, Mario, Paws, etc. as they are all too visual methods for my child, and I think the Herzog method is adaptable to all kids. Kevis
SUBJECT: Re:I should know this?? Date: 97-05-27 02:11:00 EDT
From: MGordon150
Greetings - I haven't been here in awhile - I'm like many of you, trying to make plans for next year. I meet with the school on Thursday and then we move to another state on Friday!!! I'm ready to pull my hair out! I'm meeting with the school while my husband gets a tour of our new home from the builders, therefore I'm doing this alone. I think I'm taking my mother with me for moral support. Trying to do so many things at once, I don't feel very prepared, but will do what I can in the meantime.
By the way, I'm in Oregon this week, on Friday we'll be in Washington state.
Hang in there everyone! Summer is almost here!
Martha
SUBJECT: Re: I Shouldn't Have To Tell Date: 97-05-28 12:38:35 EDT
From: MLADJA
Hi Everybody!
Can anyone tell me how long it usually takes to receive a copy of "I Shouldn't Have To Tell You"? I sent for it about three weeks ago and am chomping at the bit!
Maureen
SUBJECT: Re: I Shouldn't Have To Tell Date: 97-05-28 20:17:56 EDT
From: SuZQ0321
You wrote:<<<Can anyone tell me how long it usually takes to receive a copy
of "I Shouldn't Have To Tell You"? I sent for it about three weeks ago and
am chomping at the bit!>>>
Hang in there! More books were just delivered this week, so it should arrive soon. If not, post another message. All books are insured, now, so it shouldn't get lost in the mail. Pediatric Building Blocks is a small clinic and orders for this book have been hard to keep up with. Thanks for your patience. :-)
SUBJECT: Re:I should know this?? Date: 97-05-29 00:16:48 EDT
From: Siwel55
An excellent typing program that I have used successfully is the Diana King
alphabetic approach to typing. It is taught rapidlly (the whole keyboard can
be taught in approximately two sessions of 20 minutes each) and the kids
really like it because they already know the alphabet.
Students with NVLD can be taught to write their verbal stories into written work by using a tape recorder. Often these individuals become intimidated when having to write. When their creativity has been recorded, they have something to START to write with. Please be patient, as it probably will be a slow process in the beginning. After while, the paper and pen can replace the tape recorder because the individual no longer has the fear of writing. At this time perhaps outlining a story/topic will help the individual to be able to express his/her creativity. Gradually, the degree of details would probably lesson.
When the process of organizing abstract thoughts come easy to most of us, it
is not so with these persons with NVLD. They will have to learn to do so
with lots of practices. Because of this nature, a lot fall on the shoulders
The thing that helped my son the most in typing practice has been being in a
supervised chat room every day. He has been so anxious to say what he wants
to say-and the only way to do it is to type like crazy-that it's speeded
him up considerably!
SUBJECT: ADD with NonVerbal Learning Date: 97-06-01 21:04:44 EDT
From: RAEMY0984
My two children have been diagnosed with mild ADD and non verbal learning problems. They both have 20 point differences in Verbal IQ and performance.
I also have an 11 point diff in performance. Is this genetic? I need info
desperately. I am overwhelmed by these labels, feel I barely have resources
to help them, never mind support them for adulthood, and feel their future
has been seriously undermined. These are gorgeous and splendid kids. Is
this common? Cause?Neurologist says Ritalin is indicated. Could their ADD be
causing the learning problems? I am ignorant and skeptical. Experts and
likeminded parents please respond.......
SUBJECT: Re:ADD with NonVerbal
Learning Date: 97-06-02 14:42:34 EDT
From: KathyCS
I have a son with NVLD and ADHD. Ritalin does help him to focus better and
slows down his rate of bouncing off the wall, but does not solve his learning
problems.
SUBJECT: Learn to Type Date: 97-06-04 10:40:03 EDT
From: Grace2al
After looking at all the typing programs that CompUSA has my son decided to stick with what he knows. So we got the "Learn To Type" by sunburst. This is what they used at school this year and as he likes to finish what he starts(if it interests him) he can pick up where he left off. My husband has started it also. It has enough graphics to keep your interest but not to overwhelm. Games after each level. We have the 3rd-8th version but I think that there is one for younger kids also. Anyway off to the last 7 days of school. see ya
SUBJECT: VICTORY! Date: 97-06-04 10:50:29 EDT
From: LoMo4UBAH
Well. we did it! My son's first IEP was today, and I was very pleased with his plan for next year. We even ended up with more services than I had anticipated! We have been struggling since October, and tremendous persistance and one key teacher made the seemingly impossible happen. As Alex's main trouble is visual-perceptual, motor-planning and his writing, he will be getting help through OHI/orthopedics and occupational therapy. These boards have been a saving grace to me during those long lonely months when I felt like noone seemed to be hearing what I was saying. He is the first kid in the county to be qualified under such broad terms, so it truly is a miracle, and I thank you all for the encouragement, information, and companionship. Each child's victory is a victory to us all!
Lori
SUBJECT: Re:VICTORY! Date: 97-06-04 15:16:24 EDT
From: PBTanguay
Lori - great news! Now you can enjoy the summer. And you couldn't be more correct - every child's victory is a victory for us all. This BB has been a great support for me also.
SUBJECT: Re:VICTORY! Date: 97-06-05 10:31:17 EDT
From: Grace2al
Enjoy the feelings of success you've earned them. And it's true with every success it's a step for all. As we download the comments and ideas to take with us . Have a great summer.
SUBJECT: Re:Not a victory yet! Date: 97-06-05 14:54:59 EDT
From: Lookheart
Hi, Been waiting, waiting and waiting, may go to hearing this summer, I"ll get a victory yet. Sue
SUBJECT: Re:Not a victory yet! Date: 97-06-05 20:29:51 EDT
From: LoMo4UBAH
You'll stay in our thoughts and prayers. One thing I've learned this year is
that "no" is simply not an option! Hang in!
SUBJECT: Schools Date: 97-06-07 09:42:21 EDT
From: CHSMom
Can anyone provide info on schoolss in the City of Ventura, as well as the
County of Santa Barbara? I'm considering moving there, and short of going to
the schools and talking to people, I don't know how to find out pertinent
info re their special ed programs, attitudes, and track records. Thanks-
Debbie
SUBJECT: Re:Schools Date: 97-06-07 21:13:52 EDT
From: Peggy 620
You might call the people at Lindamood-Bell. I think their head office is in
Santa Barbara.
SUBJECT: Re:Schools Date: 97-06-08 05:57:39 EDT
From: Lookheart
You know if we don't win in mediation in our school system I may think about
moving too although it will be a difficult decision. I don't think I will go
to California though. I hear there are some schools in MA that deal with
this disability. Maybe if we're lucky we can get to them through school
choice without moving. I am still unclear how everything works but I guess I
will learn as time goes on.
SUBJECT: I Need School Info, Too Date: 97-06-10 23:37:56 EDT
From: SistahGyrl
I am moving to Maryland in a few months and thinking about the Tacoma Park or
University Park areas. Does anyone have experience with Maryland schools
that they can share with me? My son will be entering seventh grade after a
hellish sixth grade experience during which he was moved to a self-contained
classroom. He has ADDH and NLD. I would truly like to find a supportive,
positive school program for him in our new state.
SUBJECT: It's summer Date: 97-06-11 22:29:38 EDT
From: Grace2al
The two boards I look at are this one and the 504 board both are pretty quite.
I'm interested in how Home schooling works with NLD I know that for now he's
staying in school but as he gets older.... Please note I thought we could
discuss the pro's and cons of Home sch. with NLD not Homesch. itself. Would
love the feed back.
SUBJECT: Re:I Need School Info, Too Date: 97-06-13 20:22:45 EDT
From: McCarthyA
I don't have personal experience of this, but the Chelsea School in Silver Spring is reputed to be quite good for kids with a variety of problems.
Also, Montgomery County public schools in general are pretty good-lots of
tax dollars!
SUBJECT: Schools Date: 97-06-14 08:13:56 EDT
From: Lookheart
The more I get into this, the more problems that come up. Now I find it's not the IEP that matters but the attitude. How does one tell the difference between appeasment and honesty?
SUBJECT: I need some feedback. Date: 97-06-14 10:08:04 EDT
From: Grace2al
I know that with school out there are many other things going on but I need
some input soon. We just got his Metropolaton Ach. Tests back. Guess what 99%
on reading 45% on procedures and concepts. His editing was in the 60's and
creative writing was 85% please note that's when they say what sentance would
you talk about next, not to actually write. His principal was very nice and
after reading the droves of handouts I gave her from the NLD conference this
didn't surprise her. We are trying to decide what to do next year. His school
will work with us but as you know math his greatest problem isn't addressed
like reading. Fourth grade here is a shift towards more abstract concepts
and other nld non-strengths. Please give me some feedback on the pro's and
cons of homeschooling with NLD, Socialization isn't a problem and he has an
in and out of school network of friends and activities. I do need the
Homeschooling is great as far as I'm concerned, IF it doesn't wear you out too much, if you and your child are pretty compatible, and if you are connected to the specialized services you need (for instance, ours needs a social skills group, specialized math tutoring, etc.) AND if (as you said) your child has enough connections with other friends. We found it was good because we could spend a little less time on the academics that he could whiz through with his good reading and comprehensions skills, and spend more time on physical pursuits, fine motor skills, (esp. typing and computer related) and exercises in social skills from Helping the Child that Doesn't Fit In.
Also watching lots of videos that involved talking about posture, body
language, etc. This was the mix he needed. Also, we could do his writing the
way he succeeded, and he didn't feel self-conscious that it was different
I thought about the part day to but to do a combo seems to confusing. I've been an info hound on homeschooling this past month and there are lots of resources. also look at keyword homeschool they are more active them we are, some tend to be a bit militant, but great resources. Also I got a copy of the home education mag.. and they have listed homeschool programs and www#'s. You do not have to go with a school but it is what will work for us. Many of the schools have online classrooms and chats. Oak meadow has a great bulleton board to get some ideas on. there # is http//www.oakmeadow.com there are alot more from very religious to unschooling I'm as always happy with the middle ground. hope this helps
SUBJECT:
Re: Homeschooling Date: 97-06-18 06:40:24 EDT
From: Lookheart
CHSMom, My son will hopefully have some good OT this summer through our
insurance company. We didn't even bother to push the school to give him this
service because they say his printing is in the realm of first-graders. The
OT eval he got from Children's Hospital in Boston says he needs SI therapy
but they ignored that and also ignored their suggestion he learn keyboarding
skills which actually was written into his IEP. The OT therapist at the
school says 1st grade is too young to learn keyboarding. So I may have to
trek into Boston 2 days a week this summer to get appropriate OT for him, but
if it can be done timewise it may be well worth it. He comes home almost
daily with bruises from falling down which I think may be due to his
inability to judge where his body is in relation to the environment, but my
guess is if I bring that up to the school system they will say all first
Lookhart, I would definitely listen to the OT if I were you regarding keyboarding. We had keyboarding written into our son's IEP in second grade. The school followed up intensively with the resource specialist program using various computer typing programs. He hated it, learned to hate resource pullout, and was not able to type any faster than writing. He continued through 3rd grade trying to learn to keyboard in RSP. He did need SI, so we paid our own money to have him have SI therapy in mid third to mid fourth grade. In the spring of fourth, with the OT's OK, the resource specialist taught him keyboarding in two weeks with daily lessons.
Our private OT agreed that he was developmentally not ready to handle keyboarding at 2nd and 3rd grade levels, even though many children are. She said we should have gone more to modifications of written work in the classroom for his second and third grade, until he was ready to learn keyboarding.
Also, beware of many of the computerized programs, which are highly visual and may accentuate the problem.
Amen to * beware of some of the computorized programs. My son age 8 is now starting to handle the Tonka Truck construction game, it helps with concept formation and sequential reasoning. My husband has never been that frustrated with him as he was watching him problem solve and dig computerized ditches.
To his credit he came down stairs and breathed deep. The amount of visual
stimulas in video and computer games makes them close to immpossible to
follow as they (nld) have troulbe with visual ,spatial reasoning they just
miss it. So although keyboarding has helped with getting ideas down fast the
speed of it is no more then writing. It just is cooler in his book. See ya
KevisB: who do you listen to? My advocate says the OT therapist at the school is full of BS, the OT therapist at the best hospital in the area says get him computer skills, it's a mystery to me, I'm only trying to follow the experts so-called in the field, I don't claim to have the knowledge myself.
Or, if they're like my district, they will say that his falling down is not an educational issue. I finally had an IEP today with the Director of Pupil Services. I think I was finally able to make some progress, but we will have to see what happens when school starts and it's back in "their" hands. They asked me what kind of grades I would llike him to get (he got an A-, 2 C's, a D- in English). They were shocked when I said that I didn't care what grades he gets, that grades were not the issue. What I do care about is that he receive accomodations which will allow him to try his best. But it is unfair to ask him to function in a visual, linguistic environment when he is an auditory/kinesthetic, logical learner. It's not his fault that he learns differently from the way they have chosen to teach.
Sounds like another fun summer schlepping to appointments. Try to have a
<The OT therapist at the school says 1st grade is too young to learn
keyboarding. >
Every child can learn to hunt and peck - a precursor to all proper keyboarding. And, a great tool/skill for any child who is having difficulty with using pens/pencils for writing.
<The OT eval he got from Children's Hospital in Boston says he needs SI
therapy but they ignored that and also ignored their suggestion he learn
keyboarding skills which actually was written into his IEP. >
Any time the goals and objective written into the IEP are not being addressed, or need to be adjusted you, as the parent, have the right to reconvene the IEP committee to re-design the IEP to better met your child's unique needs. Congress considers the parents EQUAL partners in their child's education, which was reaffirmed (big time) by the newly reauthorized IDEA.
Make your request in writing and ask that the IEP committee reconvene to
evaluate the goals and objectives. You don't have to sign that you agree
with the IEP unless you do. If Children's Hospital said the child should
have SI in order to address difficulities that impact learning, then the
school really can't ignore that. You can always ask for an impartial review
Hello, just a thought: Who do you listen too? I found that I read as much as I could/ listened to the experts (teachers/therpists/doc/friends). Then I took all the information and I looked at my children and said what do I think that will help them. I made my choices sometimes on my gut feeling after reviewing all the information. Remember each child is unquie. There are four of us in my family with LD's and we all are a little different. What was great for one child was not really always needed for another, yet we all have the same LD's. Sometimes it is trial and error. If you make a choice and it isn't working then try again. IEP's can be changed if needed there not cast in stone. Have more faith in yourself. Barb
SUBJECT: Re:Who do you listen to? Date: 97-06-19 10:09:50 EDT
From: Grace2al
As Mar00200... says you really have to go with what's best for your child if it doesn't fit then DO NOT DO IT. On a quick personal note, I had specialists tell my mom ideas while I was young that she went with because she didn't trust herself "they were the experts" from school choice to dr.s I've grown up fine but when sharing that another choice I know would of worked better, mom says that's what I thought but they are the experts. As a psychotherapist and parent I tell clt.s and friends" if you are in touch with your own issues and can separate them from your children then do what you know is best for them, look at the WHOLE child" Also learn keyboard at home let him play on it, and get a fun learn to type program, see how he does,as a game. We all need keyboard at sometime and the time is different for everyone.
Kendall
SUBJECT:
Re: Homeschooling-nld Date: 97-06-19 14:44:19 EDT
From: KevisB
Lookheart, I do understand your dilemma. It is very hard to deal with so much conflicting advice. I've certainly had the school's OT on the opposite side of what I felt is necessary based on others' opinions. It is also very difficult because NLD is a low incidence disorder, and I feel that the psychology/psychiatry world and the sensory integration/occupational therapy world don't talk to each other enough. It sometimes seems as if they want to treat the motor stuff differently than the academic stuff and to me IT IS ALL BRAIN STUFF.
I've only been able to deal with differing opinions of experts by learning as much as I can myself. What I would do is go back to each of the OT's and ask their reasons for their opinion very specifically, and get an opinion from the developmental pediatrician at Childrens Hospital. Having had a bad experience, I have a strong opinion, but I am not an expert. The school OT and our OT did agree on this particular area, for our child specifically. But they were not involved until mid third grade, after he had already had 1 and 1/2 years of frustrating typing instruction.
Also, the two experts in this forum disagree, as SusanS29 posted something maybe a year ago in response to my request for info about a "good" typing tutor computer program that it was a mistake to try to teach second or third graders keyboarding because it just made them hate the computer. Ratatat feels you can teach them effectively using hunt and peck.
My really strong opinion, based on our personal experience, but reinforced by the Center for Assistive Technology, in Berkeley, is that there aren't any good COMPUTER programs that teach keyboarding itself, especially NLD kids, because they all use too much visual information, which is the weakest path for someone with NLD. I'm talking about "Mavis Beacon," "Mario" and "The Wonderful World of Paws." Even though the method that was finally successful, Herzog, uses a printed sheet to copy groups of letters from, my son was able to say the letters out loud and learn the letter positions using auditory-motor, which is so much stronger for him. When he would try to process the visual information moving across the screen on Mario, for example, he would just get lost and frustrated.
CAT did give me some computer programs that can be used to reinforce
keyboarding skills, once learned, such as UltraWriter, SpellDodger, Key
Words, KidKeys, Story Weaver, and Intellitalk. I am trying to change the
general typing instruction at his school, and get the librarian to buy some
of this software. Dan has also enjoyed the "Amazing Writing Machine" by
Broderbund which has an address book component so that he can easily write
Thanks so much to all of you for your support and information. It is definitely a tough nut to crack, a challenge I never knew I would have to face but it is interesting and I have learned a lot about myself though painfully and fought many of my own fears by fighting for my son. Children's in Boston also has a Computer Center where they will advise which programs may be best for a child and that is probably the avenue I will pursue next.
As the OT I talked to this morning said, you can only work on one problem at
a time even though there are so many and I must learn not to fault myself for
< There are four of us in my family with LD's and we all are a little
different. >
Ditto here, but were walk and talk ADD!
I do think it helps having ADD (did I really say that?) when your child does in the sense that it allows one to better sit in their head and look at things through their eye and see how it feels, looks, works. That automatic empathy we bring to advocating for our kids is unique and valuable.
SUBJECT:
Re: Homeschooling-nld Date: 97-06-20 07:36:24 EDT
From: Ratatat
<Also, the two experts in this forum disagree, as SusanS29 posted something
maybe a year ago in response to my request for info about a "good" typing
tutor computer program that it was a mistake to try to teach second or third
graders keyboarding because it just made them hate the computer. Ratatat
feels you can teach them effectively using hunt and peck.>
Actually, I think Susan and I agree. I wouldn't want my child with small hands to be doing a typing tutor program at a young age. Physically, their hands are just to small and uncoordinated.
One of the things that both Susan and I have found is by providing our child
with some supervised access to AOL and online communication and emailing a
few pals who are also online has greatly increased our children's
keyboarding. They are SO MOTIVATED to use the keyboard and to write out
things that others can read and understand. My daughter's time spend at the
keyboard has increased (what one might call practice!!), and so has her
Hmm the keyboading thing could really be frustrating to a young child. Even when I introduced it to my girls (they were in end of 5th grade/end of 6th) I made sure that there was no pressure. I let them do one lesson plan per day durring the summer. Some day the plan took 10 minuets and the most time was about 38 minutes. I never made them have to type so many words per minute. I also didn't worry if they looked at the keys. I figured they still would type faster and with less frustration then when they were writing by hand.
Looking back what I found was sucessfull was any intervention that increased the childs ability to learn the material. If writing full sentences was requied when filling out a ditto and short note type answers worked better that's what we had put in IEP/504. If I thought my child needed to just listen and someone else filled out the ditto again that's what we did. The intervention should be in my opinion something that allows the child to learn as much of the same material (if possible) as the class. Interventions should not cause the child more frustration.
Your right about Aol. when my kids finished with thier lessons. Chatting
on line improved thier speed tremendously. You can't look at keys and follow
My humble opinion...the best way to learn keyboarding is to USE keyboarding and be motivated to do so. Both of my kiddos have pen pals and they use email to correspond. We also have many computer programs which are not designed to teach keyboarding per se but you sure need to find the letters to use them. One my daughter loves is Storybook Weaver. The kids also love KidPix Studio. They have fun using these to create pictures and stories and both have learned to navigate the keyboard quite well. So, find computer programs that are fun and involve keyboard use (even the cardmakers like Printshop do this) and the kids will use the keyboard. ShelleyHL
SUBJECT:
ReOnline program Date: 97-06-21 15:12:52 EDT
From: Caitlin35
The online homeschooling program I used was Willoway School-you can do a
search on your web for it...I have it bookmarked, so don't know the
URL-sorry. It was great for his typing, computer skills, writing, etc. but
it is only a middle school for fifth through eighth grades.
SUBJECT: Workshop on
NLD Date: 97-06-21 15:38:54 EDT
From: LANIV10142
I am writing a workshop for a local LD support group on non-verbal LD. I am a sp. ed. teacher and I have several students with this problem, as well as some family members. I find that many of my colleagues (sp. ed. and reg. ed. teachers), as well as parents, are totally confused by the behavior and learning styles of these students. I would welcome any suggestions for resources, instructional ideas, social skills programs, or questions which need to be addressed. E-Mail me at LANIV10142 or post a message on this board. I'm looking forward to hearing from you (parents, teachers, psychologists, etc.)
SUBJECT: Re:Workshop on NLD Date: 97-06-22 22:05:30 EDT
From: Caitlin35
If you check back on this board, there are several posts that say "Resources
for NLD" that will give you names of books. I have also found some things on
the OASIS board for asperger's syndrome to be helpful, too, especially on the
development of the IEP. Also, the dysgraphia forum is good for checking info
about alternate keyboarding methods, Alpha smart Pro, dreamwriter,
I've been offline for about a month and just read all the posts about keyboarding and the first grader. It's probably important to define what keyboarding means. It could mean hunt and peck especially to a first grader with small hands and less developed ability to isolate each finger and to know which finger is moving without looking at their hands. There are many successful hunt and peck adults in the computer field.
It could mean touch typing or a combination of both. In any case, the best
wayto improve keyboarding skills is to allow your child exposure to the
computer. I am a school based OT and I have my seven year old son write a
journal entry into his own folder in a word processing program daily. He
loves it and I can see improvement with his keyboard familiarity. I often
recommend computer and keyboard exposure in a fun way to the parents of the
kids I work with with handwriting issues. This is a computer literate
generation that will probably do very little handwriting in the future. This
is one thing that you can do to help your child this summer. Why pull your
child out of the classroom to work on keyboarding? Who knows what they are
missing? Strive for keyboard familiarity this summer - teach two hands,
right for right side, left for left side. Teach thumb for space bar and
little fingers for shift keys, return and backspace. This gets them started
