<p>[From</a> an adult with NVLD - Learning and Attention Difficulties - Parenting Groups - Learning Difficulties - GreatSchools Parent Community](<a href=“http://community.greatschools.org/groups/11554/discussion/316064]From”>http://community.greatschools.org/groups/11554/discussion/316064)
^I came across this piece written by a 22 year old diagnosed with NVLD. It’s very interesting to read his point of view.</p>
<p>I think your plan is a good one. I don’t think he needs to give up his dreams of a science degree and research. I believe there are areas of science that do not require so much math after the first couple years. Probably not physics, or some areas of chemistry, but I think they exist. Maybe even “Human Development.”</p>
<p>If he has his heart set on programming, I like your idea of vocational classes after the degree. I’m not a programmer, but have done my fair share of programming as a tool in my work. A lot of it is debugging and trudging through to get the programs to work. Unless you are doing intense programming requiring a lot of numerical methods, and requiring super elegant and robust program structure, it can actually be more of a craft than a mathematical endeavor, at least in my limited experience. I couldn’t program like a computer scientist/math wizard, but I’m able to write the programs I need and enjoy it (to a point because it can be frustrating).</p>
<p>And FYI - I’m an engineer and I’ve had several jobs in different industries. I don’t really use that much math on a day to day basis myself.</p>
<p>Good luck.</p>
<p>GoalieDad-- My son got his latest testing this summer. After a previous diagnosis of NVLD, he now has the Aspergers diagnosis. The psychologist who did the testing told us that since NVLD is not now and never has been a DSM diagnosis, many psychologists are reluctant to diagnose NVLD. Instead, people who were diagnosed as NVLD are now considered to be in the Aspergers fold.</p>
<p>And this makes sense to me. When my son first got his NVLD diagnosis, I looked up NVLD. My immediate reaction was, “Ah. Mini-Aspergers.” </p>
<p>So when someone says that NVLD people are like Aspies, I think to myself, yes, exactly like Aspies, since they are Aspies.</p>
<p>To the original poster, I agree with the other posters who say it’s time for some tough love. At some point, you need to stop paying for a course of study your child is not succeeding in, so you have to tell your son that the money will dry up (in a year, half a year, whatever length of time you decide) if he is not getting results.</p>
<p>Cardinal Fang, I know several who are Aspies with NVLD…from my totally nonprofessional perch I’d almost guess that NVLD is one component of Asperger’s. And I know the materials we were given in 2000 (and they were dated then) when D was diagnosed did make it sound like “mini-Aspergers”. But many NVLDers are NOT Aspies, and wouldn’t be served by that diagnosis at all. My D and some others are able to make up for a lot of their visual/perceptual difficulty through interpersonal skills…so, be careful casting that net.</p>
<p>D has NVLD (also ADHD–a common co-morbid), and I have always understood that she sits on the far end of a spectrum that runs through Aspergers and onward to profound autism at the far opposite end. But when all is said and done, each kid is different and the nomenclature means little.</p>
<p>My son was diagnosed with NVLD. Then five years later when we took him in to update his testing, he had all the same test results, and this time they said Aspergers. Same kid, different label. Clinicians have told me that the NVLD label is going away, but I’m not a professional so what do I know.</p>
<p>I will make one observation, though-- in my experience, an Aspergers label makes a college disabilities office sit up and take notice. It can be good to have disability services on your side.</p>
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<p>Interesting and not surprising from what I know. From my previous reading from a Yahoo NVLD group I understand NVLD is not formally recognized. I understand there is sort of a mental health bible with all the symptoms clearly defined, NVLD is not in it. I don’t remember the name of it now. </p>
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<p>I totally agree. When son was formally dx about 4 years ago, it was clearly stated in the dx by the neuropsy he has NVLD. From what I understand of NVLD & meager knowledge of Aspergers, he seem to fit more into the NVLD dx. The only thing that is unusual as a NVLDer is his auditory processing issues, NVLDers are supposed to learn by hearing, that is their strength, because of the visual organization deficits. My poor son has the double whammy of visual & auditory deficits. I imagine he must have other exceptional strengths to compensate to go as far as he did. :(</p>
<p>I feel fortunate however, the social deficit does not appear that strongly with him.
It could be the school environment. As far as I know, he was never bullied. Thanks to the wonderful teachers and principal of our local school district, all the way from elementary to high school. Since junior high, he had a best friend, who happened to be NVLD as well. He hung out with a lot of the nerdy as in science kids until their schedules makes it difficult to hang out together, since he can only do the easier math courses.</p>
<p>In college now, he has some social activities. I know he tried to join a club in his major, but cut back because he had to spend all the time on his studies. He developed an interest in alternative rock, and made a friend who shared this interest. He actually writes reviews for an alternative rock magazine, when time and opportunity allows.</p>
<p>In his evaluations, he was described as having “social perceptions” issues. Except for being very black and white, a trait I thought was due to immaturity I do not see much of evidence of his social deficits. I meet a lot of neuro-typical adults who I find rather dogmatic and black and white as well. It could be a personal trait not due to his LD. I do not know of his lack of self awareness of his limitations, not recognizing what he is not good at, is part of the LD or due to some other factors, as some posters suggested. This is very hard to figure out, I am thinking hard about it and would probably go for outside, hopefully expert help. </p>
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<p>Son’s dad is an engineer as well so we are aware that engineers do not necessarily have to do much math daily. Actually, as I recall at a gathering of engineers, they all said they do not remember any of first year calculus. Having said that, they also all passed calculus without much trouble. </p>
<p>Son’s difficulty, I just realized, extends to more than just Math. I think it’s abstract conceptual thinking, which is critical for math, that he is not good at. I have to do more research or consult an expert, but I am thinking that. His specialist tutor said he learns by rote - memorization. :(</p>
<p>Op- a suggestion-- try forgetting for the time being about your s’s diagnosis. I think you are trying to “fix” every single aspect of his life in one fell swoop, which of course I understand, being a parent myself. However, the issues and considerations and conflicts you describe exist for many families even without learning issues, or neurological issues, or what-not. And so I think you are taking a hard situation fraught with emotion and making it much harder than it needs to be.</p>
<p>Fact- at some point down the road your son will need to be self-supporting. Whether it’s at 22 or 25 or 30 doesn’t change the fact that the time will come, and he will need enough skills to hold down a job. And unless your intention is to have him in a sheltered workshop where his social worker acts in loco parentis, you need to step back from your involvement at some time in the near future.</p>
<p>Fact- many kids your son’s age pursue unrealistic careers or have over-inflated senses of their own ability to manage a difficult and competitive field. Whether he is doing it to over compensate, or just needs to feel smart, or if he could ever hack it in research is frankly- not relevant. It is a common enough thing that his motivations, while interesting, aren’t all the helpful. Your question is what to do about it.</p>
<p>Fact-some people end up in careers or jobs for which they are not particularly well suited. Sometimes the frustration gets to them and they switch fields. Sometimes they are grateful to have a paycheck and they make it work. Sometimes they get fired and are told by a supervisor, “you need to find another line of work”. And sometimes they can’t find a job… and after years of working behind the counter at CVS to pay the bills while trying to find something in their field, they get the message and move on… back to school, for vocational training, or take online courses to get certified in something more appropriate.</p>
<p>I don’t mean to sound callous, but from your description, you are trying to save your son from all the growth and frustration and eventual maturity that comes from finding out that you’re not good at something you love (or think you love.) The fact that he has learning issues doesn’t change the emotional issues. You can’t grow up for him. You can’t be that 30 year old on his behalf who looks back and regrets not having studied musicology or landscape architecture or physical therapy or agricultural science or something else for which he might have had a real flair and would have launched him into a career which he’d have loved. Plenty of people find themselves at 30.</p>
<p>So my advice is to set the limits and then withdraw. You expect him to manage a course load of X classes for the next semester and you have budgeted y semesters for him to get a BA degree. You will continue to pay his health insurance and allow him to live at home after he graduates for X months or years as long as he is either looking for work, working, or in school. If he is doing none of those things you will have another conversation.</p>
<p>And then encourage him as often as you can to visit career counseling, the tutoring office, his advisor, the dean of students, or any other “grown up” at his college who can offer advice to which he will listen. But he’s stopped listening to you, so you need to stop talking for a while. You know so much about his disabilities, his issues, his challenges, why his executive functioning is below the bar… but do you know why he’s stopped listening? So stop talking.</p>
<p>You cannot attribute every developmental issue your son confronts to a medical or neurological disorder. For sure, his path has been harder than a kid who didn’t have those issues. But what you seem loathe to recognize is that there are plenty of kids who are neurotypical or who have no LD’s or whose executive functioning is just fine… and even some of those kids flunk out. Or get lots of C’s. Or are pursuing unrealistic careers. Or who haven’t thought through the consequences of hating math but needing it for their stated major. </p>
<p>It’s called immaturity and it afflicts virtually every college kid. Some can’t get cured until a year or two of post graduate living shows them that mom and dad were right. Some get cured while still in college (the lucky ones.) And others are living on Mom’s couch at age 40 and never got cured.</p>
<p>But the world also has people who have lots of issues- medical, physical disabilities, mental challenges-- who live independently and earn a living and some of them are even good at what they do. You’ve got to let your son figure out whether he can get through his academic program right now to get to his goal- if yes, the question of whether he’ll ever get a job or be good at it is something he can defer. If he can’t get through the program he needs another major. It’s as simple as that.</p>
<p>Why make it about the LD and the diagnosis?</p>
<p>And what does the speech therapist have to say?</p>
<p>^Thank you for such a long and thoughtful post. </p>
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<p>I agree. Try as we may to be supportive, once I learned of his change to CS & Human Behavior I decide we have to rein him in. Obviously hoping he will learn from failing and failing his attempts did not work. We will not support him to take computer science major. I just want to make sure we communicate with him properly so that the message will go through. He may not accept our views and that is fine, but I am doing my due diligence to do my best by him. </p>
<p>nysmile link to greatschools was very helpful. I used to read that website, it was sponsored by Charles Schwarb then. </p>
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<p>We thought we had set up goals and boundaries with him. When he went back to college, the agreement was for him to get a degree in 4 (we expect 5 if he work summers) years. If he can, he would work in summers to help pay some of his expenses. He applied and was accepted into the college’s co-op program after doing well in the first year, so he was expected to work this summer his second year though with the economy the way it is, he said the college has already said the jobs are very competitive. </p>
<p>Do we withdraw his funds so he cannot continue attending college ? Do we not let him come home anymore ? I am trying to figure out if and how to enforce the boundaries. Even if he does not finish on time and do not do well, do we throw him out on the street ? </p>
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<p>In a support group I used to attend, I heard one mother said she feel like she should buy a farm and start working it now so that he son will have a means of living when he grew up. None of the other parents laughed. It’s a tough issue for us parents with kids with social learning disabilities. </p>
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<p>The maturity issue is one I have most difficulty with. Is son’s intransigence and bad decisions immaturity or LD ? Experience and the school of hard knocks are very good teachers for immaturity. I wonder if failure will do the same for a disability. We don’t expect a blind child to see better as they grow older. What I hope to do is to help him at least find the right path. I am thinking the more effective response has to be tailored to the reasons behind his behavior.</p>
<p>We have asked him to come back this weekend to talk. We are drawing up a plan now. I am writing it up this time.</p>
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<p>You are the person who knows most as to the reason for his defecits in living skills. Regardless of the cause, however, these defecits must be addressed if he is to be successful once he finishes schooling.</p>
<p>You can wait and see if he outgrows these defeceits if you think there is natural progress occurring. However, if you think the executive function needs more professional help, it is probably better to have your son invest more of his time now developing those skills which if successful will pay itself off in more progress as a student down the road and readiness for the workforce (and living on his own) when he is done with school.</p>
<p>He seems to spend an inordinate amount of time memorizing information in an effort to be successful without having the developed capacity to integrate that information in a productive manner. (Can’t put together the whole picture) This seems to apply both academically and in life-skills. </p>
<p>This all seems very much like my Aspie son. He spends an inordinate amount of time memorizing all kinds of information about computer parts and performance specs. He can spec out machines and find replacement parts for about anything, but really doesn’t grasp how much someone should put into a machine for their needs. Memorizes how to drive (rules of the road) but struggles to deal with new situations deciding who has the right of way.</p>
<p>Plenty of gray matter in the cranium but the white matter connecting the gray matter is inadequate and often connecting the wrong areas of gray matter. I’m trying to figure out how to arrange his life where he builds white matter so he can sort out all the stuff in the gray matter. </p>
<p>As much as you want to cut to the chase academically (building the right gray matter), the underlying lack of white matter leaves him only one technique for dealing with problems in life (working harder). When he can patch together the facts he knows to figure out what he is doing is ineffective, progress is assured.</p>
<p>I honestly think his processing defecit (integrating the information he memorizes into usable intellect) is holding him back. Addressing this (if it can be?) will give you a better idea of where he will go in life. Other than this, you are still hoping and praying for change.</p>
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<p>That describes my son’s issues perfectly also. That more than anything else, explains the difficult with math & science subjects - he cannot integrate the information and apply it. So you can understand my distress when he wants to study CS. I think he may be able to do CS in a vocational school setting, but not a college setting. The authority on NVLD, Dr Byron P. Rourke explained the white matter damage in the brain for NVLDers as well. </p>
<p>From Dr Byron P. Rourke</p>
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<p>There is no cure for white matter damage that Dr Rourke described as far as I am aware of. We hired an executive function tutor who saw him for one year to help. He learned compensatory strategies.
Then one year at a school where he did cognitive remediation addressed some his issues, with his visual spatial deficits. </p>
<p>So he spent two years of his life working on compensatory strategies as well as remediating his deficits.
I do not know if we can give him more, or he would be interested in them. He wanted very much to be in college. I fought him to take that time off. </p>
<p>There is no cure for the basic brain level kind of damage=>(Dr Rourke’s word)
Dr Rourke only talk about compensatory strategies. I guess it’s like being born without a leg or a hand. One can’t regrow a leg or hand. One can only compensate or learn to live without it. </p>
<p>From Dr Byron P. Rourke
[Question</a> 27, Answer 27](<a href=“http://www.nld-bprourke.ca/BPRA27.html]Question”>http://www.nld-bprourke.ca/BPRA27.html)
This above paragraph never fails to make my heart ache no matter how may times I have read it. </p>
<p>One of my tasks in the immediate future is to search to see if I can find a therapist or psychologist with expertise in this field to consult.</p>
<p>Update: Just had a long talk with son. We asked him how does he feel about last semester’s poor grades in his core subjects. He replied he “was happy he learned something though he was not happy with his grades”. </p>
<p>He does not want to change his major. He said he will change to a less challenging college to complete his degree. </p>
<p>We are leaving this decision for now. </p>
<p>I have given him a dead line to meet with LD adviser and Career counselor and starting next week I will drive the process myself. We are scheduled to be traveling for Feb and March but I suppose that can be canceled. </p>
<p>I do not know what to think. I still feel he is going down a dead end and will likely fail in his present major but I do not have the heart to pull the plug on him when he has, dare I say, such a good attitude “happy he learned something…” indeed. I do not believe he has enough guile to say these words without meaning to.</p>
<p>Many students of all ages attend school merely for the joy of learning. There is no harm in that principle.
Not all students attend college in order to open job/career opportunities. Some just like the experience. Not all people have limits, guidelines or expectations of a college education.
If all the Op family are content with S attending only for the joy of learning, and money is no object, then by all means there is nothing wrong with this course of action.
It might be uncommon, but best wishes, I hope it works for the student and the family.</p>
<p>What about Science, Technology and Society?</p>
<p>[Science</a>, Technology and Society Major](<a href=“http://www.mymajors.com/majors/SCI_major.html]Science”>http://www.mymajors.com/majors/SCI_major.html)</p>
<p>Do we withdraw his funds so he cannot continue attending college ? Do we not let him come home anymore ? I am trying to figure out if and how to enforce the boundaries. Even if he does not finish on time and do not do well, do we throw him out on the street ?</p>
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<p>These are good questions, but there are no easy answers. I have an older brother who is completely unable to interact with people. Life is very difficult for him (and for us as his family, because we love him). There is more to the story that I won’t share, but suffice it to say that ultimately the child grows into an adult who either will or will not be able to function effectively in the world. You can do your very best to prepare your son to make it in the world, but ultimately HE is responsible for himself. I like blossom’s post, because the emphasis on letting your son find things out for himself is spot-on. There is nothing more difficult than letting our kids fail/hurt/etc. However, sometimes there is no other way.</p>
<p>I wouldn’t advocate punishing your son by not letting him come home, or by withdrawing funds. Continue with the funding you originally planned, and when & if the time comes that your promised funding has run out … hold that line if you feel it is appropriate to do so. If he seems to be “on his way” at that time, and if you can swing it financially, you might reconsider … but only if it seems to be a good idea given the situation at that time. Otherwise, you may have to let him figure out how he is going to do it on his own. ALWAYS be there to show love and support, though. </p>
<p>As for throwing him out on the street, cross that bridge when & if you come to it. If he has to come home, you might give him X amount of time to get a job, make living arrangements, etc. Don’t worry now about what might or might not happen in the future.</p>
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<p>Is that truly how every parent of a kid with disabilities feels or should feel, though? “Sorry about the Down syndrome, Jimmy, but we did our best and now you’re 21 and on your own”?</p>
<p>I think there are varying degrees of “disability.” However, that said, my two friends who have kids with Down syndrome have prepared them to live on their own to the extent that they are able. Same with one of my cousins whose kid has autism. Another cousin’s child’s autism is severe enough that independent living won’t be an option.</p>
<p>So, no. But it’s not so simple as your post would seem to make it, Cardinal Fang. My sense of OP’s kid’s issues is in the category where making it on his own is probably do-able. Obviously, I could be wrong. It’s just friendly advice.</p>
<p>The problem is precisely, where does the parent draw the line? How much support should the parent offer the disabled adult child? Your friends with the Down kids have prepared them to live on their own, as much as the parents knew how to do. And so have all of us parents, of all kids disabled and nondisabled. But then, at some point, the child is an adult, and the parent has to decide how much to let the kid fail, and how much to step in. People who are not parents of disabled kids blithely say, just let them fail, they’ll learn from it. But maybe they won’t. Maybe they can’t.</p>
<p>Fang, nobody is saying let the kid fail and look the other way. But this kid was “abled” enough to get into college; the parents have looked every diagnosis six ways to Sunday to try and understand the deficits, and at some point, medicalizing every issue the kid has is standing in the way of the kid becoming independent. Unless the parents have concluded that the kid needs a group home and a supportive work/shelter type environment, continuing to bang the “LD Drum” is standing in the way of the kid’s success.</p>
<p>Kid can read. Kid works hard. Kid is motivated and is living independently of mom and dad (which presumes kid can do laundry, eat when hungry, use an ATM machine, figure out when he needs to buy more detergent.) Kid is struggling to find a college major where things will “click” and will also provide interesting career down the road. Kid has struggled academically.</p>
<p>This sounds more typical than atypical of a college kid- and the focus on the kids neurological deficits ignores the fact that this kid, like thousands of others, is going to have to find a path in life. Some kids have it easier than others. But this kids LD’s didn’t keep him from getting into college, and likely won’t keep him from finishing college, but the parents need to step back a bit.</p>
<p>My opinion only. I know it is tough when you’ve been supporting and helping and intervening with your kid all these years. But short of finding a job where a parent can “shadow” to make sure that deadlines are met and that the kid shows up at meetings on time- seems like the kid needs the parents to stand back, which may allow for deans, advisors, and all those other kindly adults, to take more of an active role.</p>
<p>I don’t know what to advise the OP. Maybe he or she should just step back and let the son sink or swim. But I have a kid with similar deficits, and we just had a major failure on the “step back and let him sink or swim” front. And the deans, advisors and other adults, while kindly, didn’t end up taking an active enough role.</p>