It was interesting to read in the new blog of Stephen Drake (of Not Dead Yet fame)about the negative experience he has had with the diagnosis and literature of NLD.
My son started on the path toward his diagnosis in pre-school. I was having a really hard time teaching him to zip his coat and asked my daughter's OT for suggestions. She watched my son struggle and gave me a bunch of suggestions and some literature about sensory processing to read. The info was a lot of help and once he was no longer facing the northern NY winters with his coat flapping I was happy.
When he went to school he demonstrated a quirky mix of really high level abilities in some areas and struggles and dysfluencies in other areas. Sometimes teachers loved him and other times he drove them to distraction. They did test him again at some point and found that he had an average IQ (turns out that was a pretty meaningless statement because the gap in his scores is so wide, but I didn't realize that was so significant at the time.)
In 4th grade formal evaluations took place. The words 'Non-Verbal Learning Disorder' were spoken for the first time. We were told a lot of test results and I was given a spiral notebook of information and strategies. When I got home and read through that notebook I was devastated. It was chock full of 'will nevers' and 'can'ts.' After stewing in it for several hours I called our developmental pediatrician (who was also a personal friend) at home. The literature made it sound like my son's prognosis held less hope than we expected for my daughter who has Down syndrome. I don't really cry much, but I was crying then.
Where the more familiar learning disabilities were characterized with (among other things) higher scores on the performance side of the IQ score and lower scores on the verbal side, in NLD the verbal scores are higher and performance scores are lower. There are difficulties with large and fine motor skills, reasoning, social fluency.
After my conversation with my friend that night I fluffed up my pink feathers and gave myself a talking to: this was not our first brush with disability, we already knew things about my son that exceeded the "will never" list that we had been given for example:
-He has always had a pretty funny sense of humor,
-We had already seen him overcome learning obstacles and then excel with the new info.
-We had already seen much progress with things like social fluency.
-We already had evidence that he drew connections between pieces of information that he had learned (though his way of expressing this often made people shake their heads!)
-My own verbal vs. performance abilities probably have a similar configuration and I am making it...
And most of all:
-He was-and is-a great kid!
We decided to use the suggestions we deemed helpful and toss out the rest of the book (I literally ripped the book apart--I did not want to take the chance that he would ever find and read it!) We decided to trust him and ourselves.
Since that time I have found a couple of books I do like about NLD: Bridging the Gap: Raising a Child with Nonverbal Learning Disorder by Rondalynn Varney Whitney and Raising NLD Superstars by Marcia Brown Rubenstein are two.
We arranged for a 504 plan for my son which was really never implemented so in 7th grade he was given an IEP. His modifications include double time for certain activities, word processing instead of handwriting (handwriting is and has always been impossible--his legibility is fine, but the motor-planning takes YEARS!), separating input from output (he can't write while listening, but he has a long working memory so he can record his notes later), and help organizing.
With these supports in place he succeeds. He does well in school, does well on standardized tests, acts in school plays, reads fantasy novels, plays video games and avoids dishes and bedmaking like every other highschool kid.
PSAT scores are back with very positive results so now we are working on learning what he will need to know how to do (like advocate!) to succeed in college...
Can he? We certainly believe so! We do not ever accept "can't" without proof anymore... actually, I only accept "can't right now" these days (and that only after a fight!)
And the only expert I believe about my son is him.
PS: Are migraines common among people with NLD, does anyone know? Everyone I know with the diagnosis has them...
See my other posts about NVLD here.
47 comments:
"And the only expert I believe about my son is him."
Good point.
Terri,
First, thanks for the "shout out."
Second, this is a wonderful post. My personal site doesn't have much traffic on it yet, but I promoted your post here as something people - especially parents - interested in NLD/NVLD - should check out. There's not much out there, blog-wise, on the topic.
I'll probably interact with this post for another blog posting since it's so full of really good stuff to react to. My other job calls me, though, with blog posts and emails to write.
Re: migraines. I was on an email list related to nonverbal learning disorders for awhile (the volume drove me away). My *impression* was that migraines were more common in the group than in the general population - something I've also found true in regard to people I know with aspergers. The difference is most striking in males (again, going by my impression). In the general population, migraines are pretty uncommon in men. Seems like a much higher incidence in those of us with atypical neurological wiring.
That would include me. You might not remember, but I spent much of the "Tropic Thunder" hiding from the setting sun - for the express purpose of avoiding a migraine.
I don't know from a literature standpoint whether there is some peculiar connection between NLD and migraines, but I do know from personal experience that the effects of the former can certainly trigger the latter! Perhaps Stephen is onto something with his comment about "atypical neurological wiring".
Thanks rickismom, and Stephen, and catsmeow.
As fars as migraines, I was just wondering... my son and I both have them as do so many others. It is just interesting to me...
An angle for studying... someday!
Thanks Terri for your post. My son was just diagnosed with NVLD and all the information out there is devastating. This is the first thing that I have found that is positive.
My son sounds very much like yours in social skills and abilities. The dr who tested him said although his visual scores were low 5%, his hearing and ability to memorize is 85%, that is why he is still able to make average grades and she would put him in the mild disability group.
I no longer care about him being a great student, but can someone answer me this. Is NVLD a learning disability or a life disability?
Will he enjoy the nuances of life and connect them? Will he be able to read a book and enjoy it? Will he have good relationships and will he be happy?
Karen, I can only share our own experiences but for my son I think NVLD requires life adjustments in some ways--my son, for example has no sense of time so he MUST plan... he relies on his Outlook alarms and timers for a lot (not really that unusual if you think about it.) He will need to accommodate his needs to succeed, but I don't think that's impossible.
My son LOVES to read and hopes to author fantasy novels himself someday. He is very interested in politics and history and definitely connects them--his insights often surprise people.
He tends to be a small-group friend, and is extremely loyal. Other relationships? Don't know yet, but see no reason not to hope.
He has never loved school--no one who doesn't fit the mold really does, I don't think. But he doesn't hate it--says he's indifferent--and he does see value in jumping through the school hoops to get to other things he is interested in. With his accommodations in place he is an honor student (without them he would fail.)
In the long run I think he is pretty lucky--he knows exactly where his difficulties lie and what he needs to do to succeed. Lots of adults do not have that advantage. And, if something can be explained in words, he can get it.
I read him your question and my response, he said to tell you that he is happy. He is only 17, but so far, so good...
My heart goes out to you--those days of the new diagnosis and that pitiful literature were pretty awful. Hang in there!
Thanks Terri, your words are seeds of hope to me.
Right now I am worried about making the right decisions for him and am overwhelmed with what I should fight for and what I should not. Just learning to navigate the school system is crazy.
Of course,I am also filled with guilt in that he was born with hydro, which arrested, and we were told he would be just fine. Now he is in third grade and I realize how much time I wasted in getting him help.
If I may, I do have some questions? My son is a good reader, but has trouble with comprehension and things like context clues. Was your son like this also in third grade or was he always good at understanding what he read? The dr who tested him stated that he has an average IQ, but everything I read says that these students have more and more trouble as more complex thinking is required.
My son also has trouble with writing or checking the correct answer on tests. He can orally tell me the right answer, but then (I think due to the visual deficiencies) he marks the wrong one. Was this an issue with your son and did he learn to become better through strategies or with time?
I understand the abilities of children with NVLD are different, (for example my son does not have issues with sticking to a schedule and in fact drives me crazy with being on time for things.) But any insight will be greatly appreciated.
Karen, I honestly don't remember if he had reading comprehension issues at that age--before that when he was learning to read there were significant issues, but they resolved--kinetic strategies as I recall... I do remember that he read the same few books over and over obsessively for a while and one reading teacher said that was a great way for him to increase his own reading comprehension (though I have no idea why that would be true...)
We were told that he would have ever-increasing comprehension issues and this has not proven true so far. Of course he has had support and strategies in place for years (which I doubt the folks in the literature did as the diagnosis was not even recognized when they were kids.)
His whole team was worried about abstract higher level math going into this school year and separated his math and chemistry requirements in preparation for some real struggles, but he is doing quite well with the math at this point. He will take Chemistry next year. We'll see how that goes.
It takes him hours to write even his name and if he is focused on writing he cannot focus on anything else until he is done... AND he cannot copy from plane to plane (copy from vertical board to paper lying flat on desk.) He used templates and graph paper for lots of activities over the years with varying degrees of success. The writing thing has been the hardest thing for his team to get their head around. Even today in his iep meeting they said things like "just jot it down..." several times and then would have to revise as they realized what they were saying. He uses computers for EVERYTHING--and I do mean everything. Typing is much easier than writing for him--though he still needs to listen OR type.
In 4th or 5th grade he did record test answers verbally on a microcasette recorder. His teacher hated it for some reason, but it worked. He does fine checking or circling multiple choice answers now.
The literature is only useful as a tool. It is not a map and absolutely NOT an authority. Trust me on this (though I am not an authority either! :) Hope this helps!
Terri, I believe I am done with my pity party, (it took me much longer then you :), and now I am into the action mode and I was hoping I could pick your brain. Again I realize each nvld child is different, but I just want to know what worked for you.
For example you stated the 504 was not implemented during elementary school. I can relate because Keaton's I.Q. is average (although his performance is low and his verbal is +30 pts above it) and so we are told he may not qualify for a LD because he is doing average work with an average I.Q. If they did not honor your sons 504 did you implement strategies on your own or how did he succeed during elementary school?
Also you stated you have had strategies in place for years, can you elaborate on what they were.
I am fighting a system who doesn't believe he has a LD and don't know how to change it. For example he is doing an after school program to help raise his standardized test scores. The teachers of the program feel he is too high for the program and his principle doesn't even feel he has a LD because he does so well with the instruction part of the class, but then he takes the daily test and constantly fails. I feel terrible that he has been in this class 5X a week, 2 hours a day, for 10 weeks and has not been instructed in a manner that allows him to succeed.
Next question did you use a separate tutor at any time for him? If so was it a specialized tutor, such as an educational therapist, or was it a basic "chain" type tutoring center?
Next I am confused as to the social aspects of NVLD. I am told that during high school it can get worse. Have you seen this to be true. My son's favorite things are sports (he excels at them and therefore gets a lot of respect from peers) and the social aspect of school. Right now he does not show any of the social difficulties of NVLD, but I do not understand if I should teaching subtle social cues in case it does affect him later. Did your son show any social signs in elementary school?
Lastly, is there anything that you wished you had done differently.
You know all I hear is what my son won't do. He won't be an Engineer, he won't be able to grasp abstract ideas, he probably won't go to college, but when you interact with him you see and hear an intelligent, articulate, funny and creative human being. I just want to help meld this two sides of him so that he can be more balanced and achieve whatever he wishes. Your insight would be greatly appreciated.
Karen, Great to hear from you again! If you ever want to e-mail me the address is in my profile.
Where do I start?
In 4th grade neither the district nor my son's teachers believed in NLD or in my son--one teacher had the audacity to tell my son this (and I am so tempted now whenever his name is on the honor roll, or he gets a role in a play to forward the announcements to her!)
Start by questioning the reports. Any basic statistics student knows that an average of widely spread points is meaningless. I recommend asking the psychologist that as a question and then pointing out that the report doesn't show that--every time. I have had wording about the average being meaningless or misleading put in every report. (And it is the gap itself that causes the difficulty.)
I recommend getting the book From Emotions to Advocacy by Pete and Pam Wright (wrightslaw.com) and hook up with your local Learning Disability organization. Other parents may know how to best approach your district, etc.
My son's team fixated on the part of the report that said ADHD. They insisted that his primary diagnosis on the 504 plan be ADHD. That was awful too because they insisted that if he were only medicated... Well we trialed the med and it did nothing except increase his headaches--now we know that he is only inattentive when his NLD is not accommodated.
He really frustrated teachers because he would do terribly in class and they would insist that he just wasn't that good and then he would ace the standardized tests so they couldn't write him off... They made lots of dire predictions. They wanted him to be a middle student they could ignore, instead he was at the top AND the bottom... As long as he was well behaved and learned--I made no apologies for anything else. I am sorry he didn't make their days easy, but neither he nor I could help that.
We got him a 504 plan that included organizational support, double time for everything, word processing. Until 7th grade it was implemented as far as I could force it to be (I have another child with a disability--I am an experienced advocate) but not because anyone bought in, so each moment of compliance was individually fought for and achieved--it was exhausting. We didn't do tutoring, but strongly considered homeschooling--if he had been unhappy it would have happened. Fortunately, he sees other people's problems with him as their problem and always has... if he had been a different kind of kid we would have made bigger steps--whatever it took.
He has run into gaps in learning once in a while (much less once they stopped trying to make him write in class) and it does take some investigation to figure out where he dropped off, but once that gap is filled he catches up pretty well.
His 5th grade team was just ineffectual (for all kids, not just my son) and his primary 6th grade teacher insisted he was just lazy. He got an IEP the spring of 6th grade.
In 7th grade his team met with me the 2nd week of school and said they wanted him moved to a 12:1:1 special ed class--without having implemented one single strategy from his IEP. I did a lot of fast (part persuasion, part tantrum) talking and got his science and social studies teachers on board--they handled the rest of the team. Between that and a truly excellent special ed teacher things really started to turn around.
The best experience ever was a triennial eval a couple years back where the psychologist spent a lot of time teasing out exactly where his struggles lay and explaining it all to him--including what he could do to accommodate himself. She was extraordinary.
In high school his team has been great. They love him and find him fascinating (even though they know they will be sitting with him for 6 hours for every exam.)
Socially, he would have reminded you of Data from Star Trek Next Gen as a young child. He has grown more and more fluid every year. Processing time makes some things awkward still, and he is a really quirky thinker so things are not perfectly smooth, but he does ok. His Sp ed teacher said she imagines him being the hit of grad school. I expect that is accurate. I have always pointed out what I notice about interactions, we talk about interactions in movies a lot. It can't hurt! He wants to be a writer so that lends itself nicely.
He is very literal and very loyal in relationships. He does not trust people who have proven to be mean and he is never mean himself. He is very funny, but not always quick. He has a few very loyal friends. And this is ok with him--if he craved being prom king he would be unhappy, but that has never been him. He loves acting (and directors love him because he keeps all the drama on the stage.) Theater kids love him because he can play anyone--and he is the aloud reader in class because of those skills (his English teacher told me last week that she loved him most as an elderly southern black woman...)
My son will not be an engineer--because he does not want to be. He was interested in marine biology for many years, but that has waned over time. He got great PSAT scores and colleges are chasing him. He will have to look for schools with good disability accommodations. I expect there will be struggles, but if he likes what he is learning he will make it happen.
He is an abstract thinker, and funny and creative. I decided long ago that he isn't broken, just different and I LIKE the way he is. I work with him to figure out how to do the things he needs/wants, but I don't sweat just because someone else says I should and I tell him these things.
Back in the 4-6th grade mess he said he thought he would never be any good at school. I said maybe not, but school is only a tiny part of life so I didn't (and don't) care if he is good at it... I would rather he was good at life--they are not the boss of him and have no say about the quality of his life. I say be defiant and unwavering in what you know about your son.
I wish I hadn't caved on the ADD medication because I KNEW that was wrong and it started a cascade of headaches that was really hard to reverse. I have occasionally gotten too task-involved and forgotten to appreciate and enjoy my son just as he is. This is a mistake with worse potential than whether he does well on his shark diorama or misses the bus (again!)
I would say keep things in perspective as much as possible and believe in your son and yourself as the first experts--give yourself a title if you want. Watch for issues, but don't borrow trouble. Believe he is who you know him to be--no matter what anyone else says. Some things you will go over, others through and others, around... you can do this!
This is long and rambling. I hope it makes sense and I hope it helps. It sounds like your son's love of sports and socializing are real strengths that can be used to support lots of success.
My 14 yr old daughter has been diagnosed with NVLD. Whenever I read about this disability it is almost too much for me and I get very depressed. Your comments have made me feel better. She has so many wonderful traits and I want her to have a bright future. She is going to start high school next year and we are currently fighting her 8th grade team regarding placement for next year. They have made comments about not being able to give her copies of notes, not being able to give her untimed tests and how being short staffed at high school level will make it difficult make these accommodations so they want to put her in the program for really low students. These accommodations are listed in her IEP. The stress is difficult and the whole situation makes me doubt myself and my estimation of my own child.
Hi Maryann, I know these doubts! Hang in there, you are not wrong. We had people trying to put my son into segregated special ed classes as well. In 7th grade when my son's team wanted to do that I acknowledged that my son's information level was very high and his skill (writing, timing) level was much lower--AND they were NOT going to diminish his information to work on the skills. I said that we really did hope his skills would improve, but if they never did he would build his life on that information.
Test accommodations are part of both IDEA and Part 504--if the district is not listening find an advocate (your local Learning Disability organization, Parent-to-Parent or advocacy organization may be able to help you with this.) My son has double time for everything, for exams his teacher moderates from noon-6pm (not sure why they don't schedule him 9-3, but it is up to them.)
We are lucky because his secondary teachers have been so much more accommodating than the elementary were.
I wish you luck and stamina.
Hi Terri. What a wonderful post. I have a son who is now 18 with NLD. We are a little farther along the road, but still struggle with many of the same issues. He was diagnosed when he was in grade 5, although at that time there was very little information about it. By the end of grade 7 we were finally able to get some information and had a plan for him.
In answer to one of your questions, college is definately a possibility. Matt has been accepted to 5 different programmes and now must decide which one he wants to accept. All are either in chemisty or biology.
My fears for him are that he will get too overwhelmed in college with the work load so while many parents are able to send their kids off into the world at this time, I know we will still be closely monitoring him and helping him to manage.
Thank you Barbara! It is very affirming to hear that we are on the right path. I am going to post a website I found about having a disability in college (I'd post it now, but I can't remember where I found it at this moment...)
I am sure there will be challenges and that my son will need support, but I am optimistic. Attentive and optimistic.
Maryann, first, listen to Terri :) She has taken me from a hysterical mother to one that is simply whimpering. Her knowledge has changed my whole perspective:) (Terri I am sorry to wait so long to respond to your posting. I will email you soon and thank you.)
To you, Maryann, I especially like the part where she states that her son's informational input was much higher then his testing output. That is what I see with my son also. When I first found out about Keaton's NVLD, I wanted him taken out for certain subjects so he could get one on one instruction. But after talking with numerous people, including special ed teachers, parents of special ed kids, principal, etc, I soon realized that kids learn best with other kids of the same abilities, both socially and academically. If they tried to put Keaton in a lower class then his ability I would fight tooth and nail.
I don't understand why your daughter could not get a copy of the teachers notes, or have another student use copy paper to make her a set of notes. Also a new High School in our district has something called Smartboards. Whatever the teacher writes on the board is sent to students computers and they can "copy" without typing a thing.
From what I understand if your district cannot provide what she needs to succeed, in the least restrictive environment, then they have to send her to a school that can, even if it is private. Even the threat of this usually has them reconsidering :)
Thank you Karen, your comments are reassuring. We are in the process of making decisions for my daughter's future and I am feeling better about it after visiting this website.
Barbara and Maryann (and Terri),
When Keaton was found to have hydrocephalus in-utero. I became an information gathering trying to find everything I could to help him. I found much negative information and was discouraged until I found people who had lived through it and were able to help me understand the real life situational aspects of it. Later, when Keaton was older, I was able to help other mothers going through the same situation as I had. Even though this time of my life is one of the most painful periods of it, Keaton's hydro also has brought me great joy. I believe we are given certain things in our lives to help us grow and to more importantly be able to help others.
With that said I have a favor to ask of you. Terri has already given me permission to contact her regarding the many questions I have, and I was hoping to get your emails also if you are willing. I have gained more hope from this short blog then the hundreds of hours I have logged on the internet finding negative things about NLD. I do realize that it is lopsided as your children are ahead of mine and therefore I would gain the most, but I promise to pass on what I learn to other mothers in the same situation.
If you are interested send me your emails at karen@rothfus.com
thank you
MaryAnn,
The decision-making times are hard--even when things are going well. There is nothing mentioned in your comment that couldn't be done in a regular classroom/school it is a matter of will, not capacity. Hold your ground. And more than anything hold on to what YOU know about your child. With the combination of unwavering belief in your child and some serious advocacy work an awful lot can be accomplished that many called 'impossible.' I have written many posts about advocacy skills that have worked for me which you can find in the labels section on the right side of my blog, maybe some of those will prove useful.
Karen, I am so glad you and others have found this post encouraging. I think helping each other along is the only way to work and would be happy to be part of a group. It's funny, I write a lot about disability rights, and a fair amount about Down syndrome, but never thought to write about NLD before... glad I did and glad it has been helpful. I have another idea for an NLD post that I hope I will get to next week...
Wow, I am so excited to have found your blog through Stephen Drake's site! I have 12 (almost 13) year old twin boys, both of whom were been diagnosed with Asperger's Syndrome when they were 9. One of them also has ADHD, severe depression and anxiety disorder and they both have some sensory issues. They're wonderful terrific kids but it has been a real roller coaster to be their mother - and you understand!
I've been lucky in our school district, they have bent over backwards to help the boys be successful even before we had "official" diagnosis and without any 504 or IEP plans. I really cannot say enough about how great the school teachers and administrators have been and the more I read the more I realize how rare that is and how lucky we have been.
The hardest thing for me is just finding people that understand. From acquaintances to friends to family members, people just don't get them. I hear that our parenting is "making" them act up, or their diet is the root of all their issues or they just need a good beating and that will solve our problems. (As if!)
Anyway, thank you for this space and I am so excited to be able to "talk" with other parents who get it. Thank you!
Please visit my blog:
http://nldthoughtsandfeelings.wordpress.com/.
I like your blog a great deal!
Sorry to be a pest, but again I have questions. We received our son's official report yesterday and although much of what it said was expected I am still confused.
For example she cannot label him nld because he only has 1/2 the markers for it. This was determined by a survey my husband, older son, and I took. I worry that these issues that we marked he does not have will show up later.
She also said that he is good at recognizing faces and visual images, but that complex visual things he cannot such as diagrams, graphs etc. So this is why she believes he doesn't have as much social trouble. Also she stated that although his small motor skills are lacking (especially in his dominant left side) surprisingly his large motor skills are not in that he is very good at sports.
He does fit the nvld profile academically in that he is better at rote things than problem solving or comprehension and that these are were his real challenges lie.
She also only gave his averaged I.Q. and did not separate his verbal from performance although she stated that she did not believe his I.Q. was reflective of his true abilities.
Her accommodations did not include things like more time on tests although she did state elsewhere in the report that he did much better academically on the tests she gave him, then his state tests which were average, because she thinks, she gave him more time.
But the things that really scared me was that she thought he would be a concrete thinker, who would not get the big picture of things. She attributed this to the lack of semantic pathways and to him being a verbal learner who will take the verbal rule over a visual exception because he may not see the visual exception.
She also stated that he was working so hard to keep up with his peers and that the effort must be herculean for him. She stated that he needs some of the burden taken off of him through accommodation however, what she purposed such as having the teacher structure the lesson in a black and white format instead of students inferring isn't going to be done by most teachers.
I guess I'm lost because I don't know what is going on inside of his head and what is important to help him lead a better life. Do I take him to the ocular specialist she recommends that may be able to help see more complex shapes and improve his understanding? Do I take him to an intensive educational center for the summer which will help him with comprehension and therefore improve his social and academic skills, but will take the summer away from him? Do I just say forget it and that he is fine the way he is??
I realize no one can answer these questions, I wish you could, but could you tell me what things I can help him change and what things I cannot. For example as he grows will he learn to comprehend the big picture? Can I teach him to be reflective so that he will know what he is feeling or will he be able to empathize with someone else?
thanks
Hi Katy and WELCOME. I do understand... I think everyone here does. It is really good to find others who get it.
Hannah Cammille, I will be following your blog with interest!
Annonymous, hoo boy! You have had a week. I will share my thoughts, I am no expert though, so please know that.
Some of your testing results make no sense to me: half the markers? I know a guy with NLD who pitched for his baseball team. Here is something parents of kids with Down syndrome know that no one tells anyone else: Down syndrome has hundreds of possible symptoms--no kid gets all of them, or even most of them. When people look at kids with DS they think they know what they are dealing with, but they don't. At all. The same is true of every other diagnosis. My son loves to shoot hoops, play football and run... he isn't really an athlete and never had the patience for teams, but he isn't uncoordinated (well, in the plays they sometimes want him to tapdance which is a hilariously painful learning process for him--and he laughs too fyi--he is 6'1" and lanky... tapdancing is not his medium!)
If this was a school psychologist you have the right to see his actual test results. There is a law called FERPPA that says so. They can charge you a reasonable amount for copies. If this was a private person, ask for the breakdown of the scores.
I have never heard of a survey for NLD...
Why won't his accommodations be made by teachers?? Even teachers who don't want to will comply usually (it is only harder when they don't want to... it does blow my mind when they decide they won't, but that is another story.)
If this was not a private evaluation, you may want to consider getting one... they are expensive, but for us it was money well spent. School districts also affect testing results--our district liked ADD and didn't like LD. I was told this year that this was because there is a private LD school in my area they don't want to send kids to...
How will the summer program help him if the school can't? Will they put accommodations in place? If not, how will that work?
I don't know about the ocular stuff.
There are 2 types of people: people who believe that ability is static, and people who believe ability grows. I am the second type of person. Nothing else serves me (and I have watched people--and myself--grow.) People who say "He will be this way," strike me as singularly unimaginative. My advice (yes, advice!) is ignore them--there are many, many options between that concrete little statement and setting yourself/him up for too much disappointment... choose some of the other options. I mean it--this is a challenge not a life-sentence.
Sorry if that is too strong, but I believe in some well-placed defiance. (And school professionals are notoriously poor at predicting adult outcomes--I have many stories to tell about this!)
OMG When I read this and at the end it asks about migraines I nearly fell out of my seat. My son who is in "special ed" clasess just had his IEP and they brought fourth to me that he through undiagnoised Psych (from a major university) testing looks to have NVLD. The more I read the more I am finding a break through not only for my son but for myself.
Thanks for all the information everyone! It's great to find stuff on NLD that comes from people that actually have the condition. I recently found out about it and I am positive it fits me. I'm going to be a bit long-winded, but I'm doing for a purpose. Please tell me in your opinion as someone with or as a parent with a child with NLD if what I say fits the general mold.
Motor:
I walked at about 9 months, but was always clumsy. I could never learn to play sports. In fact I was scared of the ball in softball because I couldn't perceive where it was in relation to the sky and my glove (I still can't) I was always getting reprimanded for bumping into people. I learned to ride a bike at age 7. As for today
I still can't copy notes from a board very well or when someone is talking. My hand dexterity is so bad that I can't put make up on correctly. At my weekly writing center appointments I have my tutor be my scribe. As for gross motor skills today just put it this way---I fall down stairs and up stairs. I live on the second floor of a townhouse with steep carpeted stairs and it's hard to determine where I am in relation to where I need to be.
Visual-Spacial:
I just finished being on the competitive rowing team at The Evergreen State College in Wa state as a 2nd year rower and first year coxswain. As a rower I had difficulty with timing (rowing together with other people) among other things, though all rowers had problems, so that didn't really bother me too much, because I came to practice on time and did the best that I could. The problems in this area come with coxing, which I am still doing as well as rowing as learning to drive the motor boat. My problem in this area is that I can't discern distances without obvious markers and I have difficulty doing multiple things at once: counting, watching for obstacles, motivating my team, and responding to novel situations like a change in wind and/or current or a new venue. I had a horrible experience at an important race. We had wind and I couldn't figure out how to keep us centered in our lane, which was not meant to be our lane to begin with---I misperceived which was our lane. Then i didn't give lane markers cause I was busy motivating. On the other hand I won another race, but it was a very small one. I'm still learning. I know it's an activity which requires a lot of visual-spacial skills and multitasking.
Social:
Ostracized, verbally bullied, way to gullible, and gave out too much information to people that I never knew. Once I told my life story the entire time at a Mariners baseball game to a person I just met. I have difficulty getting to the point, because I can't distinguish what's important in getting my message across and what isn't. I fail interviews and am scared of them. I still have trouble understanding unwritten social rules. I can see facial expressions and irritation and the desire to leave a conversation, but I don't know how to have a conversation.
Educational:
Great standardized test scores (top 80%), very verbose. Trouble in math. Trouble with reading comprehension. I was fine in elementary school and anything that was textbook rote learning or any rote learning for that matter--any deviations from this and I get lost. I tried doing pre-calculus last winter and did horrible even though I went to the math center every day, sometimes for 4 hours before class the two days of a week before. Then on the tests there would be a slight change and I didn't know what to do. I get anxiety when I see any sort of graphs or tables or anything. I am currently finishing my last quarter at the Evergreen State College and although one instructor told me that I can't seem to grasp main concepts of reading materials and my papers are full of too much detail, I am now doing an independent contract that allows me to show my learning by meeting with him and verbalizing my thoughts, doing some writing (well I will), and I have joined Toastmasters to improve my social and speaking skills.
Thanks for reading all that. I am diagnosed with PDD-NOS, Bipolar Disorder, and Borderline Personality Disorder. I saw this diagnosis and I feel that maybe I should say something at my next apt. but I don't want to come off as a hypochondriac. Should I bring this post I wrote and some info about NLD with me to the meeting? Thanks again.
Hi Monica,
I have a couple of thoughts on your posts. First of all, I have also often wondered if I don't have NVLD myself--for many of the same reasons you describe. It may be useful to bring information to the MD/neuropsych. It's an interesting thought.
My second thought is while I know you are listing problems to make a case about possible diagnosis, don't be too hard on yourself.
Sports excellence is the exception, not the rule--that's what makes folks work for it. You have only been rowing for a season--and even seasoned athletes blow it big pretty frequently (that's where all the 'agony of defeat' videos come from.)
Many folks who were really unathletic younger find that in their mid-to-late twenties many things settle out. (Brain based studies support this, by the way.)
Social awkwardness, over-sharing and under-sharing also improve with age and living. And EVERYONE hates and fears interviews!!! And boy do I know how you feel about graphs and tables!
It sounds like you employ some good strategies already, and learning more might be helpful. I hope you will believe in your strengths and use them to meet your needs! I wish you luck.
Hi Terri - love your insight! I was wondering if anyone following this blog can answer a question for me. My daughter is going into 7th grade. She has had an iep since 1st grade - with a primary coding of SLD (specific LD) with a secondary coding of speech and language impairment. Basically because of receptive and expressive language 'issues'. This past year I got together with an educational consultant and she says that my daughter shows 'some NLD-ish profiles'. Mainly because she is a fluent reader yet struggles to comprehend, she has some social pragmatic problems, difficulty with time and space and her place in it, has math difficulties, writing struggles, and she is a 'concrete, literal thinker'. She always has challenges with holding info in short-term memory.
She always loved learning and school, but can't understand why some girls are mean...
The public school has not been eager to provide any services. It has been a 6 year struggle. I have supplemented with private
sp ed tutoring with good success. This past January I have moved my daughter to a small private Christian school that has a 'learning center' where she will get 1:1 math instruction along with 1:3 for language arts.
They are following a fifth grade math book more slowly and doing some flash cards for math fluency. They are going to start Math-U-See next year. And the learning center teacher utilizes her own curriculum for the comprehension and writing piece.
Now that the year is over and I reflect on the private school experience - I realize that although the school is small (only 1 class per grade) and the teachers are nurturing in that they allow the extra time and the slower pace and the small group and one on one, and the environment is more sheltered - my dilemna is that would that setting backfire in the long run when she goes off to High School in a couple of years. My older son who is in high school and in on the other end of learning- high achieving, no stuggles...he along with my husband believe she would learn more about the real world in the public school, meaning she can more fully develop her social skills with a larger body of students and she will have access to the general classroom setting which will be more typical in High school and college.
Any thoughts or input from anyone who walked this walk would be appreciated!
Hello Tadaa! I have some opinions about this, but they are just my opinions--I am not an expert by any means!
To my way of thinking school is about learning to do the things we don't know how to do, not to get more and more of what we do know how to do. And learning to work in larger groups fits into this...
BUT the operative term here is LEARNING--these processes (ie: larger group learning, things like organizing, etc) are not going to come naturally. They must be taught/coached. If the supports to teach (not just expect--which is a post for another day!) her to be successful in the larger setting it could be like throwing a non-swimmer in the deep end of a pool without a swimming teacher... not pretty.
Sorry I can't give the either/or on this. The goal from my standpoint would be to reduce sheltering without leaving her on her own.
I am with your daughter--I have never understood when girls are mean (and I am way out of high school!)
I have concerns about Math-U-See for NVLD kids because their stronger learning style is usually language-based and not visual (whereas kids with Down syndrome are often stronger visually.) Doing it 1:1 may succeed because she and the teacher talk it through as they go. This only matters if you are advocating for a math program in a different setting, you may need to tease out WHY it is working.
I would push hard for supports in the school. My son has had Resource Room for a period a day for the past few years so he gets a check-in daily and that has worked well.
You can also begin a building process by introducing opportunities to grow into the smaller setting (or in after school activities--like a large martial arts class with an attentive and supportive sensei.)
I hope you find this helpful--these decisions are so tricky...
I would like to comment on Tadaa's situation. My NVLD child is also a girl and she has experienced many of the things you have mentioned (girls are mean!!). She has just finished middle school and will be entering high school this fall. I really agonized over what would be best for her. Were we live, there is only one private school that goes up to high school level and I really felt she would not do well there. She would not get any academic support and I also worried about the social aspects since class sizes are small and opportunities to meet new people limited. We do, however, have a charter school that has small classes but has an emphasis on the arts and technology. She was accepted to the school but we ended up not choosing that school either for 2 reasons: they have no sport programs at all and I feel that that is an area that might let my daughter branch out and make new friends and they also have no vocational program. We ended up choosing the local high school but we made sure that she would receive accommodations so she can succeed. It was a hard decision and I have often wished that I had sent her to the charter school several years earlier. It is so hard at this age. If your daughter is happy at this school and making progress I would be inclined to leave her there. Why not visit your high school and see what they have to offer for your daughter and what they would expect from her. That might make it easier to make your decision.
Tadaa, I am behind all of you in that my son will start fourth grade this year, but I am also so worried about middle school because of the horrors I hear and see about it. I too, already, am contemplating my options.
For my son I know that I will have to find a balance of all the factors that are important to me. Like what is best for his self esteem and also academically, socially and in regards to sports (his favorite thing) and also be aware of his feelings because he will do best if he believes he will be successful in a certain environment.
I also will search out people that can help me make this decision and who are not biased in their opinions. For example this summer my son is going to a center for learning disabilities and although I was reluctant to put my trust in the director, I have begun to realize how amazing her skill is in knowing what he needs and how to achieve it. If I am able to put my trust in her long term then I will ask her opinion.
Also look towards people who have lived through it, (like Terri). I also just read a book by a woman whose daughter has NLD (the author is a counselor herself) and she has sections in the book about how to choose a school. She also adds how she chose them for her daughter, what worked and what didn't. It is inspiring also because her daughter is now in graduate school.
Since your daughter loves learning I think it is important to pick someplace where that love will be nurtured. Ask her what is important and let her visit both places when kids are in residence... One might be too overwhelming for her, while the other might feel like home?
I'm sorry I can't be more concrete, but pass on any words of wisdom you learn during this process to me so that when my time of worry comes.....lol.
Maryann, can you tell us what accommodations you decided on with the high school in regards to your daughter?
Karen...for high school we decided that my daughter would receive direct instruction in small class settings for ELA and Math (she has to pass standardized testing in these subjects to graduate in our state). She will also be in small class settings for Social Studies and Science. We connected with a guidance councilor at the school who will be our contact person if we feel the schedule needs to be changed. We made it clear that flexibility was important so if my daughter is feeling overwhelmed or under-challenged we can change her schedule to accommodate her. My daughter will also receive academic support one period a day for SS and Science. She will be given more time for tests (1 1/2 times). She is also taking career explorations where students spend a couple of weeks at a time exploring all the vocational programs offered at her school. Finally, she is going to run cross country so we are hoping she will make some connections and friends which is an issue for her. Finally, I think we are going to have to make sure her teachers follow her IEP because I do hear that some teachers are reluctant to do so. Of course, they're supposed to follow it but....
Thanks Mary Ann and Karen!
My son's high school program has been regular classes for everything, computers for all output (sometimes he doesn't use it for math though),and Resource Room every day for study help and organization. He gets double time for all tests--uses every minute of it for social studies and English, finishes a bit earlier for math. They also split some of his requirements--he took Math B this year (which includes geometry) and will take chemistry next year--they worked to find him a language-based math teacher too.
You may find my post about belonging to groups helpful. If you click on the title of the blog it will bring you to the main page, or in the right column click on the non-verbal learning disorder or social skills tag to read it.
Terri, How did your school work on finding a language based math teacher? Did they have certain things in mind or did they take recommendations from school personal etc.
Also Terri (I know I always have a million questions for you) is Tom taking regular classes vs. AP and Honor classes and if so how will that affect his college aspects. I ask because we recently met with older sons counselor regarding his classes for the next two years of high school. He is taking five AP classes in his Jr year and I was concerned it was too much and that he should take some honors classes instead in the subjects he does not like as well. She stated that he needs the AP classes because he would have trouble getting into a college with just honors. I worry for Keaton when he gets to high school, what is your experience?
thanks
Sorry about my previous neurotic comment about my worries regarding Keaton getting into college. It has always been a dream of mine that both my boys go to college, but I realize I need to take one day at a time and not look too far into the future. Plus after speaking with Keaton's summer teacher she has stated if he wants he will be able to go (as long as he doesn't get sidetracked in high school :) ) and that his disability can be an advantage in some ways in that he can get special help getting in and once he gets there.
Also TaDaa I am finding myself in the same predicament as you much sooner then I expected. We are trying to decide between two schools for Keaton next year (One school starts in two weeks) His summer teacher recommended a private school near us that is VERY small. 175 kids in K-8. They are 14 in kids in the class Keaton would be. They also break down the class for certain subjects and so he would learn math and English in 5-1. They are very academic and teach french, computers, along with the regular curriculum. They also teach primarily auditory. Both his summer teacher and neuro-psych think he will be able to do the work if it is presented in this type of environment. We spoke with the head of the school and although she stated that they they cannot accomodate his LD they are willing to do things I don't think his reg school will such as if he has trouble with tests they will read them to him, if he cannot learn to automatically use cursive they will allow him to print. They also have smart boards so that he can use his computer for notes in higher grades.
We meet with his public school principal on Monday and she has been very nice and has made sure he has gotten the best teacher for him next year (this is the school that starts soon) but because he is not failing academically he will not get alot of help or accomodations. In fact when our neuro-psych spoke with the school's psych she as told that Keaton would be a very low priority. He will probably only get more time on tests and with Calif is such crisis regarding education they are moving the class size up so that he will have 35 to 1.
So I too am torn. Do I pick the one that is academic(but might be too hard for him) or do I pick the one that is good for him socially and hope that I can fill the voids academically?
Also Terri, Keaton has been at this summer program and it is very interesting some of the things I have learned. They are trying to raise his visual abilities and his ability to process faster. They also work on visualization for comprehension and a bunch of other stuff. One thing I didn't realize is that the reason he has trouble with cursive and with copying things from the board to paper. You may already know this, but it is kinda like how they say kids who don't crawl have trouble reading. Well since keaton's visual was impaired in the first year of life, he did not see and reach for things. Other kids this age learn automatic muscle control at this time, but he never did. So he has to think about writing each letter instead of it being automatic. So wereas other kids can just process what they need to put on paper, Keaton has to think of each thing individually; what is on the board, what is the teacher saying and also how to form each letter so he can put it on paper. He is also very unaware of his body because of this. If you tap him on his back and then ask him to point to a diagram of were he was touched, he can't do it. If you show him a hand sign and ask him to copy it behind his back or with his eyes closed he can't do it.
As a recent college grad with NLD I would say that you should pick the smaller private school. He'll do better in a smaller environment. Also, the academics are more important that the socialization. I was terrorized in the larger grades and having a large student body to deal with made it harder. I understand that you also want him to learn to socialize as that is an issue with NLDer's as well. One thing that I suggest is starting a club based on a shared interest of your son and some peers that is fully monitored in the beginning and then they can be alone more. Each person can have a specific duty. Maybe you can even quietly record the meetings and share them with just your son so that he can hear some of the stuff that he says. Personally I say stuff that sounds okay to me, but when I hear it replayed I get embarassed and think "did I really say that!"
As for the college thing, it did take me 5 years to get through junior college. That's mostly from taking medical withdrawals and taking half loads. No one taught me how to take notes, organize myself, etc. Also I just got diagnosed a few weeks ago. Officially as LDNOS---My insurance won't cover testing, but I do have NLD. As for my BA, I went to The Evergreen State College in Olympia, Wa, which was a mixed feeling. First of all Evergreen is a Liberal Arts college that gives narrative evaluations rather than grades. You can choose between the common program (16 credits---4 credits from 4 separate subjects) taught by one or more faculty members---i.e. he wouldn't go to separate rooms for separate subjects, also many programs have a thing called seminar in which you discuss that week's reading; night and weekend classes which are like other college courses, but with narrative evaluations; Internships where you can get credit for working; and my favorite independent contracts. You can put together a contract on what you will be studying and how you plan on gaining and showing your knowledge---this is the best for NLDer's because I hate reading as I can't read that fast nor understand the subject matter. Anyways, hope I gave you some insight.
Monica
Thanks for your input Monica it was so interesting to see it through the eyes of someone with NLD.
Unfortunately I am more confused then ever. The more we investigated the private school we learned that some people had issues with it. Some people we spoke with thought they were getting a better education for their kids, but when they went on to high school they were no better off, and sometimes worse, then their public school peers. Plus I worry that with only one teacher per grade and some of them without teaching credentials you don't know what to expect.
On the other side however we went to see the public school principal today and she basically thinks he does not have a real learning disability because he can learn. In fact she thinks that because he has an average intelligence and is doing above average work that he is actually overachieving already (even though the neuropsych put in her report that she believes his IQ is not an true indicator of his intelligence because of the variables. She also insinuated that perhaps the neuro-psych that tested him was inexperienced and that the program we are sending him to for the summer is just trying to take our money. I believe that she truly has Keaton's best interest at heart and that she believes what she says, but I am getting information from so many sources and don't know who to believe anymore. I want things set in place for future years, such as jr high, when things become more difficult for him. I also want to make learning easier for him. My husband thought she was great, although he also liked the private school director. We set up an appointment in two weeks to meet with the school psych, his teacher for next year and the principal. The principal wants to discuss things the teacher can do in class for him. She stated that she can try to give us a 504, but they are usually used for kids who have medical issues such as diabetes and that she doesn't believe he needs one.
She made me feel foolish and that I am causing Keaton more harm than good, that he will succeed on his own without any intervention because he will learn to manage his own problem areas.
I guess I need to find an advocate that can help me sort out this mess. I tried at the beginning to do this but only spoke with two. The first did not speak English well and the second had never heard of NLD.
AHH I am starting to believe I am crazy:)
My daughter was diagnosed with NVLD and dyslexia. Her biggest problem is that she does not want to acknowledge that she learns differently and there must work differently. It is a real challenge and a roster of subject tutors and learning specialists that I am hoping will get her to focus on what she can do to take control of her work. She was recently retested (11th Grade)and was curious about the results and what they meant. The doctor who did the testing spent time explaining the accommodations she needs - such as extra time - but she has rejected in the past. There is an old saying, you can take a horse to water but you cannot make it drink. As parents, we are putting all the resources we can find at her disposal - she has our love and support, but she has to be willing to embrace the concept that only she can do the work that it takes to succeed.
Hello MomofAmanda, I completely agree with you. My first belief is in my son and his capacity to make his way-his way. The whole goal is supporting him in his life, nothing else.
For some kids there is more than accepting help at stake too. At some schools getting help is very stigmatizing which makes having any difference hard to accept. And some folks don't like difference at all--in themselves or others. The teen years are just hard sometimes also... I don't think there is a 'formula.'
My son finds the whole thing interesting thus far and finds developing accommodations to make things work an interesting puzzle. But it could certainly have gone differently up til now--and still could as he grows up.
Accommodations and supports are supposed to be like me having a computer or a blackberry--they help and make some things much easier, but can we get by without? Sure we can...
We parents just give it what we can and trust them to build their path. And they will--
My son...in borrowing words from U.S. District Judge Marvin Shoob..."A lesser spirit would have been crushed long ago." He's too quiet to be a "problem" student. He's too polite to be a "bad influence". He's too typical looking to have a "real" disability. He's athletic, so "he can't really have learning needs." His grades range from A's to F's - they say he should try harder. If they only could see he works twice as hard for half the reward.
anonymous, you are describing my son to a "T". It is hard to fight a system who believes nothing is wrong with your child.....
karen (who again can't get the comp to accept my password)
Annonymous and Karen, I am sorry, I don't know when you made these comments as Blogger no longer e-mails me when comments come (grrrr!)
It's heartwrenching to watch your kids struggle and have it minimized... And it is sooo frustrating. It is not to systems' advantage to acknowledge differences or struggles... then they would have to change something. And they LIKE the way they do things...
Advocacy skills sometimes help... relationship-building with your district (not the PTO, teachers and principals) sometimes helps. Remebering that it's a marathon and not a sprint helps me... except when I am tired out...
We went through the same thing with Tom, from kindergarten through 7th grade. That's 8 years of advocacy... with them saying there was really nothing wrong. It has been better lately but it took forever to get here.
Hang in there. (Easy to say, harder to do, of course...)
Question for parents: I am a Special Education teacher in California and am working with a family whose son was diagnosed with NVLD (NLD)--in your opinion, what are the most effective accommodations a school can provide a student (he is in high school) academically? I feel I have all of the bases covered, but have had some intense interactions with the parents lately about what we are doing to support their son. I could really use some insight as I want to make sure that the upcoming IEP is a positive experience and that I do the right thing.
Thanks for your help!
I'm sorry I didn't see your comment until today. For my son it was important to know that his fine motor skills were very impacted, that he could not mult-task (as in listen and take notes at the same time--input and output needed to be separate), that he has a very slow processing time but also has a very large working memory, that executive functions are foreign to him (you can't say 'get organized' he needs to be taught how), that he does not learn by repitition and that he had a learning disability and is bright...
The most important things in his IEP were 1. Assistive tech (keyboarding is much more efficient than writing--and a laptop, not alphasmart once he got to hs), 2. Extended time for everything--he knows his material, but is quite slow, the time allows him to show what he knows. Also modifying amount of work--10 problems was enough, 30 would take all night and teach him nothing more. 3. Teachers who were highly verbal. He processes language best, fewer graphs and more narrative is his best learning style. 4. Study skills/organizational skills instruction--he hated it, but needed it! 5. A point person who listened. When he would run into a glitch having someone who could look for the missing pieces with him was essential. Discipline would not identify the missing piece (and if you listened you could easily tell the difference between not feeling like it and not getting it!)
This is a quick summary, I hope it helps. Your student is lucky to have a teacher who investigates. I 'may' be one of those parents sometimes, but when it was obvious the school was actively working for him I would ease off very happily. Good luck! My son is in college now and holding his own... thanks to some awesome teachers!
We have had an awful time with school since 4th grade, and were even told to punish our child by a middle school guidance counselor. Our guidance counselors are so limited in their abilities to understand NLD, I don't waste my time with them anymore. Our child wasn't diagnosed until high school, and has been emotionally damaged by her school experiences. The IEP we finally got in place has been little help. The teachers all consider themselves "too busy" to deal with an individual child who needs a different approach, more help with organization, and doesn't learn like the average learner. "If she would only work harder" has been the constant from teachers who have no interest in understanding that it is not lack of effort, it is lack of visual spatial perception and conception, motor skills impairments, processing speed and working memory challenges, lack of organization skills, etc. The IEP chair person is supposed to be a special educator, but is so immature and lacking in special education skills that she won't speak to my child and won't respond to my correspondence because I suggest that she needs to take another approach to dealing with my child. I am forced to try to deal with six different high school teachers to try to negotiate support and find ways for my child to learn and be successful. It's not going well, that's for sure. We have run across a few exceptional teachers who are willing to listen and learn so that they can be effective in teaching our child, but they are truly the exceptions, not the rule. The administrators choose to put their heads in the sand...after all my child is just one of a great many and really isn't important to them. Yes, I am bitter and sickened by the lack of professionalism and concern from this public school.
Despite all of that, I daily treasure my child and reassure her that she is not defined by small-minded curriculum imparters, but by her own beautiful insight, creativity, quirky sense of humor, loyalty, and a soul that has been touched by an angel. I worry about the future but I am secure in my knowledge that my child is a beautiful, special person who will find a way to grow and learn and be successful in her own way.
(I am sorry, I just saw this today.. I had forgotten that I need to check for comments now)
I am so sorry for your struggle... and so glad that you stand by your child. It is horrible when you are stuck in a pile of un-believers... and so hard to keep your optimism. Our kids have a different path, but it IS a path!
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