04/25/2012:
"I would like to know what you would say to a student who was a "LD" child,
(only in math). One who only went to the grade 6 and was latter tested in
her 30s at grade 3 math and college level Literature and Arts. What would
you say to a student who has been in college on and off for 22 years, has
79 credits and was just told that an AA or AS is unattainable with her
"math disability"? What would you say.....
"
03/26/2012:
"To Desperate Mom of 2/28 post: I have a 19 year old with NLD.
Misdiagnosed unti 17. Just finishing 1st year at out of state big 12
school. It's been a disaster, as expected. (We let her try.). I am
looking into the University of Arizona. They have a SALT program for LD
kids. Read "From The Inside Out". Written by NLD College student. Some
of these kids go to multiple schools-- most, in fact, do. He has made it
this far!!! If he must say local or stay where he is, find a graduate
student (PhD or LD specialist) willing to meet with him 2-3 times per
week. We are using meds right now to deal with anxiety and self-esteem
issues. good luck!
"
02/28/2012:
"I have a 21 yr old son, who is about to be asked to leave his college
because of NLD. His self-esteem is plummeting and has taken to blaming me
for his learning difficulties.Please refer me to specialist on NLD in Los
Angeles area that can help him transition into adult life accepting his
condition. Desperate Mom "
02/7/2012:
"For the parent 10-10-11. I would look for a placement with a teacher who
is not going to teach your child in the traditional way. ABA behavioral
plans are not the answers. ABA is the buzz word plan for any autism
spectrum person who is not behaving, but there is NO DATA that proves it
helps any child. There is much information that it damages children and
makes them feel hopeless. If a child is having a behavior problem then
the school team of professionals 1st order of business should be to find
out WHY. Instead ABA will only coerce the child's behavior into behaving
the way they deem acceptable and makes their job easier. A child acts out
when they are not engaged and if a teacher cannot teach then they are
failing at teaching. Do not medicate or put your child on a behavior plan
because the teachers cannot teach . Find a teacher who can teach him. The
supporters and makers of the ABA plan say there is proof but it is not
conclusive or long term. A positive endorsem!
ent from the team making money off the plan is not concrete evidence, it
is a marketing maneuver. You need to find a teacher who can think outside
the box and will treat your child a valuable member of society just as he
is. Find a someone that will work with him outside the school on a one on
one teaching style that your child's brain gets. If you can't find that
person, become that person and just bite off the responsibility of your
child's education. You know him better than anyone you are his 1st
teacher. The schools want to force your child to learn in the way they
teach everyone else. That doesn't work with some children and all ABA
will do is modify his behavior with drills that will teach him his needs
and wants do not matter only the approval of the team administrating the
drills. ABA is inhumane and should be outlawed. Go to Aspies for
Freedom and read what some of the adults have to say about it who had it
implemented on themselves. Don't take the words o!
f the people selling the system as truth. Yes behavior modifi!
cation changes behavior but it does not teach the kids anything
academically or help them learn. It is behavior modification pure and
simple by wearing the child down to be what the administrator facilitating
the program deem acceptable. Personally I'de like to modify some of the
ABA administrator's behaviors and make them into feeling caring people
again.
"
01/4/2012:
"I was diagnosed with NonVerbal Learning Disorder (age:16) and ADD (age:5).
I'm interested in getting an accurate diagnosis and was wondering if
anyone knows a specialist that's in Daytona Beach or Ormond Beach, FL and
that accepts Cigna Ins. ?
"
12/19/2011:
"This is in reply to 10-10-2011:
You need to request someone who is BCBA and who will come in and set up a
behavior system for your child. Applied Behavior Analysis (ABA) is what
most behaviorists use and will work if he is struggling. If he has a
difficult time verbalizing himself they need to set up a system to help
him to that. The speech therapist can do social stories with him about
different ways to express himself. If he needs a cuing system like a green
cards means he's ok, a yellow card means he is frustrated, and a red card
means he is angry and needs to go to a safe place to calm down. There are
a million things that schools can set into place! The only this is, is
that it will be work for the teacher and other staff....but that is at
first, once they get the bxs under control less effort will have to be
used. Hope that helps....let me know if you have any other questions. :)
"
11/22/2011:
"have any of you tried a product called Nanopro? It is colostrum and I have
had a good deal of improvement with my own spatial reasoning.
I tried it out of the blue and I have noticed a more greater apptitude for
concentration and memory.
thanks
"
10/18/2011:
"Non verbal communication, may come as separation anxiety, may have
implications of short term memory, may exhibit sterility, or extinction of
fear, and may be a trait found in a person who responds poorly to all
effectual prompts.
"
10/10/2011:
"my son is 6years old and needs help. The boardof education of New York
City has tried to be helpful but He is not learning in their special ed
classes. He is unattentive and is becoming labeled asa behavior because he
doesnt want to do his work. He gets OPT. Speech and I need help. Where
can I find a school that understands his needs. I am lost and
helpless.They havent fully dignose him.he has very little verbal skill but
he is good with memory.
"
09/12/2011:
"I live in ms. I am willing to relocate. I have 2 boys that have been
diagnosed with a mixed expressive receptive language disorder. The school
has been of very little help. I am looking for a school that can educate
them but still be affordable. Can anyone help? Please???
"
07/25/2011:
"Would you please let me know of the best schools for a child with nld? We
are willing to relocate anywhere as this disorder is getting in the way of
our 11 year old's child's education. We are finding that educating our 18
year old son with Aspergers is less of a challenge. Thank you for any
help!
"
04/21/2011:
"My daughters were diagnosed with NVLD, with a primary disability related
to ocular motor dysfunction: problems with near focus convergence,
coordinated eye movements, nystagmus caused by fatigue trying to control
sustained near focus eye movements (for example, during standardized
testing for 2+hours or more, or copying from a blackboard to paper). Both
had very poor balance, poor sense of direction, poor peripheral vision,
poor coordination of fine motor eye/hand movements and poor ability to
learn sequences without a lot of extra practice and step by step examples
to follow. One has extraordinary auditory memory (98%) ability, the other
requires kinetic movement to internalize rote information and processes.
The NVLD conditions appear to be both neuorologically based and
hereditary. My older child is now on the Dean's list at college studying
to become a middle school teacher, having learned to work around her
disabilities in part through physio/neurological therapy involving a
customized program of Tae Kwon Do. She is now a blackbelt in Martial Arts
after being unable to ride a bicycle until age 12. Where she was unable to
write a paragraph independently in 6th grade or read, she is now excelling
in her history and English classes. So you cannot generalize strengths and
weaknesses for children with NVLD, and you must find a way to help your
child work around them according to their individual strengths and
weaknesses."
04/4/2011:
"We have 13 yr old son recently dx NLD and anxiety. Would live to find a
therapist in St Paul , Minnesota that has experience in both areas.
Anyone know of one?"
02/23/2011:
"Our daughter has NLD and we're moving to jacksonville Florida. Any
suggestion on schools."
07/26/2010:
"yet to be clearly defined and accepted by many educators and other
professionals as a distinct disorder. Nevertheless, parents often seek
information about this often-publicized and somewhat controversial
disorder.
This might be the single worst article I have EVER SEEN anywhere--
No controversy - white matter deficiency in addition to other proven
scientific research.....
I could go on and on regarding the MISINFORMATION in this article but I
would rather spend time helping my son with articles that are valid and
informative
"
07/26/2010:
" Dr. Smith Myles says, 'Additional research and better diagnostic tools
are required to clearly define the characteristics of NLD and determine
whether or not it can be considered a distinct disorder.'
I MUST add this for all parents of children with NLD/NVLD
YALE- UNIVERSITY OF MEDICINE HAS DONE EXTENSIVE RESEARCH AND THE FACTS
REGARDING NLD CAN BE FOUND ON THEIR WEBSITE.
THERE ARE SEVERAL DIAGNOSTIC TOOLS USED TODAY THAT CLEARLY DEFINE THIS
DISORDER
I SEE THE AUTHOR IS FROM UNIV OF KANSAS - GREAT BASKETBALL
YALE - GREAT MEDICAL SCHOOL "
07/19/2010:
"I am trying to understand this fully as my daughter has turners syndrome
and reading the above sounds very much like her. Although she spoke late.
Yet only a blood test has been given. Sadly she is 22 years old and the
conditon was missed. She was orignally dinagosed with receptive language
problems. I am trying to get her some extra help but none is coming. She
left school with no exams to speak of. Has a maths problems which is now
known as turner's. I wondered what help do schools normally give children
with turner's syndrome?"
05/24/2010:
"My son is 15 he was diog. with nvld this year in 4th grade I was told it
was anxiety. He always made a-b's except for math. He was reading at the
age of 4. I always said if he could read math he would be a straight a
student. Now that he is in High School it is getting harder for him. I
have been trying to find a neurolgist and patholgist in this area that can
work with him over the summer but, no one in this area seems to know much
about it. He is in a private school that is doing everything they can to
accomidate him and he has his 504 paper work done. It took a year of
dr.appt., testing, waiting on test results, change meds before the school
could help. If you know of any dr. in the louisiana area that can help me
please let me know. thank you"
04/29/2010:
"KEEP INFORMING PARENTS OF ANY NEW INFORMATION OR LAWS THAT CHANGE
REGARDING NDL. I BELIEVE MANY MALES STUDENTS TODAY SUFFER FROM THIS
DISABLITY. THE REAL QUESTION IS WHY?"
04/27/2010:
"I live in Va. I have a 10 year old daughter that has severe anxiety and
what we think is NLD. We are having a hard time obtaining a diagnosis
because of the anxiety. Where can we go to get this figured out? We are
willing to travel to Richmond, Northern VA and/or Baltimore. Any
suggestions would be great. Thanks."
04/12/2010:
"I blog about NLD because I have it, and too few have heard of it. Please
look my blog up at:
http://nldthoughtsandfeelings.wordpress.com, and let me know what you
think. Thanks."
03/26/2010:
"what happens when you 'the parent' has the disorder
and has been 'told' at the age 36 (I already new in school and didn't
understand why or why no one understood me or she's just not doing it.Then
on the other side you get it cause they feel sorry for you and give it and
still you are back to,ok I shood haven't said any thing at all!(how about
that for selfsteem)until i had my first child he is 11years old and in 4th
grade I knew when he was 3years old that he was more than the active boy
Ah! what? you going todo drug him up! yes I have been on that side of the
fence with the family,as if I already didn't have the single mother
stamped across my forhead.I have told the schools sence 1st grade, he is
not getting it and when he is its not but just enuff to get by.He has been
tested for ADHD and has LD and meds. IEP and mettings reading resorce,
math resorce an still dosen't seem to help.At school teachers say that he
is a good and polight student he dosen't give them a hard time and wish
they had more like him,but sometimes he !
is easly distracked and getts off task and has to be redirected but they
say they all do.True. but mike also wants to pleas everybody and wants to
fade in the background to.He dosen't want to get called on cause he's
ether lost or dosen't know it.Then when he does say or ask its totaly so
far off or only has bits and peaces and then he dose have it today and
want the next.I feel like I am not going anything but the thing is I can
go to the parent classes, surf the net read, ask questions and still don't
get it cause it's like i was in class and hear you talking but do i realy
understand or konw how to use what you do know or how to put the info in
motion when you don't know yourself till you see what your kids feeling
because of things that you have gone threw.pleas hepl the not get it mom .
"
03/24/2010:
"My daughter is 11(almost 12) and has NVLD. Charter schools have been
wonderful for her. They are small so she can get around without getting
lost in the crowd of kids. She is having alot of trouble with homework
and remembering to hand it in. She also have Type 1 diabetes - with the
costs associated with her diabetes we cannot afford private school for
high school. Her charter school ends in 8th grade. I do not know what I
will do about High school. Does anyone have any suggestions."
03/17/2010:
"Thank you for providing the information that is so important to the people
that struggle with it. After years of frustration with our sons school we
have at his sophmore year end decided to home school as a result of his
growing frustation with an uncooperative environment. We have been pushed
so hard to treat NLD with inapprpriate drugs that we have decided that our
child deserves a better opportunity to succeed in. Don't give up on your
child, they need you to advacte for them. Do not feel pressured into
inappropriate action by them. Inappropriate treatment is no exscue for
blantant ignorance."
03/4/2010:
"I have a 14 year old daughter who has nonverbal learning disabilities or
visual and auditory processing disorder. COuld you recommend a high school
for her in Virginia? It has been a real struggle with school especially as
she progress into the 8th grade.
"
03/1/2010:
"Hi Debra, We too have a 14 year old son who was diagnosed with NVLD and
anxiety a few years ago. We have been struggling to find a school for him
that will be the right fit. We live in the Baltimore area as well and
looked at several schools before deciding on one in Rockville. We want to
make a change for High School though. I would love to chat with you and
exchange info and /or ideas. Diane m-dgreenbaum@comcast.net"
02/25/2010:
"Debra,
This website www.mansef.org is The Maryland Association of NonPublic
Special Education Facilities. Just click on the map for Baltimore County,
look at the private schools, the class/age ranges they deal with, and look
at the 'Disabilities Served' Section. I'm not sure where NLD would fall
under the 'Disabilities Served' section, but this website is a great
resource. Also, I've heard great things about Forbush in Baltimore County
from other sources but you'd have to probably call and see if they deal
with NLD and Anxiety."
02/24/2010:
"My 14 year-old son was diagnosed with NLD, and generalized anxiety
disorder when he was 10. We have been trying to work with his middle
school via his 504 plan accommodations. It seems that some of his teachers
really try to comply with his accommodations and others don't. We've never
really established an ideal learning environment for him.
He is starting high school next year and we have been looking for
private/ specialty schools that will better suit his needs. We live in
Baltimore county Md. and have been unable to find much out there for NLD
kids. Does anyone know of a school that would suit an NLD child? Does
anyone know of an organization or website that helps parents find schools
that suit these exceptional kids?
Thank you! Debra"
01/28/2010:
"Hello, I am a sixteen yr. old who has lived with NLD all my life, but I
didn't get diagnosed with it until last year. I've struggled with school
pretty much my entire life, and I couldn't understand why. I got held back
in eigth grade because I was struggling academically and socially.
Kids like me with NLD really do need help asap, even if it is harder to
diagnose them in their younger years. If I had gotten help earlier I might
not be struggling to fit into a world I can't comprehend. I am better
socially now though, because I found my passion, choir. It's how I make
friends and it's where I feel accepted. I've never been as passionate
about anything as I have been with choir.
So to the parents of other NLD kids, I think the best thing you can give
them is love and acceptance. And if they can find that one thing they are
passionate about like me, I think they can work through anything else NLD
might cause."
01/25/2010:
"This article describes my child perfectly. He was diagnosed with NLVD at
16 1/2 after many years of misdiagnosis of ADD/ADHD. While he has a very
high IQ, he did not do well in high school and has gotten his GED after
homeschooling his 11th and 12th grade years. He has tried college, but he
has dropped out and feels like such a failure because he could not pass.
Now, we are trying to find a college that will cater to this learning
disability and give him some academic success. At 20, he is extremely
depressed and needs to do something to boost him to his potential."
01/5/2010:
"My son is now 22. Here's a tip on how to help with reading problems. My
son would focus on to the point of obsession on one subject as a toddler.
His interest was trains. So, whatever his interest was as he grew and
developed, that was the subject of the books I bought him to read. He had
no interests in the standard books you and I read. So, give them books
they want to read. He ended up reading them all with little help from me.
He eventually used those skills to read other books in college! YES! He
has his AA and is on the Dean's List! I never thought he could go to
college so there is great potential for children with NLD. He still lacks
social skills and that's our biggest challenge now. How to be
pleasant...hmmmm. "
12/28/2009:
"My daughter is an adult who has suffered with NLD her whole life, but I
have had trouble finding a professional to help her. Can anybody
recommend a Professional to work with her in the Washington D.C area? "
11/17/2009:
"My advice concerning self-esteem in children and adults with NLD is to try
different extra-curricular activities or hobbies in a class setting until
the NLDer finds something he/she enjoys. I have NLD and being allowed to
try different things is very important in helping relieve stress and
figuring out who we are. This, in turn, helps us find a future career and
improves self-esteem because we've found something we're good at doing."
11/10/2009:
"My son wasn't diagnosed until he had to repeat the 8th grade. For years,
I thought he had a behavioral problem--but that was his cover up for
feeling dumb. I complained to my doctor that I suspected my son had a
learning disability, but that his school was no help. She referred me to
a University of Illinois' Neuropscychologist who was simply fantastic.
Not only was she able to diagnose him through a series of tests, her
report was so thorough that the school district didn't bother having him
re-tested. It also helped that U of I is a reputable institution. He was
able to get an IEP which is good for 3 years at which time he will be
re-evaluated and the IEP will be adjusted to fit him academically as
needed. A huge burden has been lifted. This doctor even explained to my
son that none of this is his fault and that it's just how he is wired. He
is doing much better."
10/27/2009:
"I have a son who was diagnosed with NLD this year. I could really use
some help with his self esteem. Any suggestions?"
10/27/2009:
"My son was diagnosed as having Dyspraxia by a neurologist at the age of 9,
a LD diagnosis more commonly used in the UK. At the age of 12 we were
told that NLD would fit if needed for IEP. Does any one know the
difference, is based on diagnostic criteria or is one a medical term and
the other psycho/educational ? "
10/20/2009:
"my daug. is 15 n the 8th grade and is still failing i hav tried everything
she has all the systoms of a NLD child ineed 2 no how 2 get her the proper
help she needs before its 2 late. we live n cincinnati ohio please help."
09/1/2009:
"Well since I have NVLD and have lived with it for 15 years i do know a bit
about my problem albeit it is mild , i live in the UK so it may be a
little different to USA Education Authorities , What I find is
disgraceful is that teachers cannot pick up on a kid having NVLD because
it is invisible until they are older , you did not mention that... .and
plus trouble with lighting change and worrying too much !! "
08/10/2009:
"I liked the article above, a great work book for parents, teachers and
therapist is 'The Source Book for Non Verbal Learning Disorders' author is
Sue Thompson.
The author was a special education teacher and I believe (I might be wrong
here) she had a child who had this. Any rate this book will prove to be an
invaluable resource. I kept one at home, made many copies of selected
sections for teachers, therapist and used it as a resource during IEP
meetings. I purchased copies for selected therapist and doctors who were
trying to understand the dynamics of it.
The book is spot on and is a wonderful resource. It will help you help
your child.
This book will help you educate the educators.
If this site will allow it my web site is www.OhioHealthHelp.com is is an
outgrowth of having to deal with this issue in particular in my family. I
hope this information helps someone.
That book was like a Bible to me. As you can see I highly recommend it.
Can't say enough good things about it."
07/7/2009:
"I feel like I am screaming and nobody hears me. My son has NLD and he is
8. It hurts so bad as he cannot make friends. He wants to and tries to
but it never works out. He is very shy and sweet, stinks at sports and
kids don't want to include him. I hate it, I have always taught my kids
to be kind to everyone even if they are different from you. It seems like
kids don't get taught that and it hurts me. Why don't parents and kids
get it that everyone wants and needs a friend, they might just have
trouble getting there. I just wish kids would give him a chance. Does
anyone know what I mean?
Sad Mom"
04/29/2009:
"Hello
I am students of exceptional children. I want to know information more
about Rote verbal and expressive and receptive language skills of
nonverbal learning disabilities. Can I have your catalog or brochure about
it? Best regards.
Sisterly
setare
"
04/21/2009:
"NLD is a distinct disorder, just ask me, I have had problems all my life
and it wasn't my fault."
03/19/2009:
"Our son was diagnosed NLD last summer. And I have been researching ever
since. I appears that all the experts and schools are either on the West
or East Coast. I, unfortunately, am just South of Cleveland, Ohio.
I have been attempting to educate the educators on NLD. 98% has never
heard of NLD.
Our school system has one other child (elementary) that is NLD. I am sure
there are others but like our son are told they are ADHD, ADD, AS....
What is the best way to obtain information on the number of NLD children
in my area? This info is confidential so schools and doctors will not be
a source of help. Do I put an ad in the newspaper?
All help and suggestions/direction is appreciated.
Thank you
Nancy A. Motl a/k/a Mom on a Mission!"