Maybe dealing with VSL?

[UrbanSue]

Hi everyone, I'm new to posting on this part of the board.

 

I don't have a ton of time at the moment but I'm here about my ds who is 8.5. Very brief history: he was born with spina bifida. Physically, it's quite severe. He's parapalegic with no function through his hips. But, cognitively, he's mostly fine. He never had any obvious developmental delays in this area, anyway. Spina bifida is hugely variable--sometimes it affects kids in the opposite way as my son.

 

Anyway, we've been told from his birth that he'd probably have learning disabilities but not really why. I'm not sure if anyone really knows why. The brain of SB kids is structured differently--that's one way it is diagnosed. And I think that having limited mobility from birth certainly impacts learning and environmental interactions and, just, personality.

 

We've always home schooled and never had any kind of testing done. Ds does not receive any outside services at this time though we'll probably be restarting some PT soon. Anyway, he's in third grade and mostly working at or above grade level in everything so I'm not really sure I belong here, but here I am anyway.

 

School is definitely a struggle and his abilities seem all over the map. It's not that ds isn't learning but that school is mostly unpleasant for both of us and I am feeling ever more strongly that I am not teaching in a way that will optimize his intelligence. And while I know we all want to optimize our child's intelligence, it's all the more important with a physically handicapped child, you know what I mean? After a really frustrating day today I've been reading around here and on google and my thoughts and observations are starting to coalesce around the idea that he is probably a VSL-type.

 

A couple of questions: I have also, at times, wondered if he is ADD or has CAPD. Are the three related? I see VSL come up all the time on dyslexia sites. I don't know a lot about dyslexia but ds reads at a very, very high level--and can understand it. Can you have dyslexia but not struggle at all with reading?

 

Where else should I go? I don't feel like formal testing is called for. This isn't, exactly, causing problems in that he isn't behind. But I want to do the best job I can with him.

 

Thanks in advance for anything you can offer.

[wapiti]

Reading: Silverman's Upside Down Brilliance (note for lurkers - this is currently available at the GDC for a more reasonable price than has been typical at amazon the past few years; otherwise, check your library) and the Eides' The Dyslexic Advantage. Even if he's not dyslexic (as in reading disorder) he may still have a dyslexic processing style - at least, that's what I was told by our COVD doc about one of my kids...

 

It isn't possible to be sure about problems like ADD, CAPD, etc. unless you do some testing (which often leads to more testing with other types of professionals, depending). Along these lines, the Eides' The Mislabeled Child may be helpful, as it attempts to distinguish between some of these learning issues with overlapping symptoms.

[LittleIzumi]

In general, ADD minds are wired as VSL, and CAPD is easy to confuse with ADD, so yes, they are all similar/tied together.

[PeterPan]

nt

[UrbanSue]

Thanks, OhElizabeth . . .

 

I am hesitant to jump on testing for two reasons and I'm okay with push back from you or anyone else.

 

First, we have a ton of physical/medical/equipment things that are all hitting the fan right now. These are huge, huge priorities that are affecting basic life functions for him. They are taking a ton of time and energy and we only have so much. So that is our priority.

 

But, second, he's not behind. In many ways, whatever is going on with him is not causing problems and that is why I felt funny posting here. He is at or above grade level in everything. On the other hand . . .I posted here, so obviously everything is not unicorns and roses in our school day.

 

Here are a couple of concrete examples:

 

Writing: I was having him alternate dictation and copywork (we use the WWE approach but with McGuffey's) but he told me recently that he prefers dictation. (Though he hates both so that's not saying much). So I read him a sentence. He remember it perfectly on one hearing. And then he takes, easily, an hour to write it down often making punctuation, capitalization, and spelling errors. In history (which he LOVES) I ask him for one sentence about Valley Forge. He freezes--it's like he can't extract only one thing from what he heard. When, finally, through coaxing he comes up with a beautiful sentence, he takes an hour to get it down.

 

Spelling/reading: I gave him super casual tests with McGuffey Readers today. He can read--fluently and with expression--stuff that is college level. He can narrate at about a ninth-grade level. He frequently recites, verbatim, lengthy passages from books he's read such as Little House on the Prairie. But he often misspells words. I think that part of his hesitation and slowness with writing is his fear of making a mistake.

 

Memory: He memorized "The Midnight Ride of Paul Revere" last year (in second grade) but often can't recall a simple fact we learned a minute or two before. He only barely knows basic addition and subtraction facts but is flying through and loving Beast Academy. He shuts down with math practice or review but mostly does okay with word problems and complicated mental math.

 

He plays violin (not amazingly well but his perfectionism gets in the way) and is a talented artist. He often spends several hours a day drawing. He is slow and inattentive with all chores and self-care tasks. He hums constantly. Constantly. He only very recently was ever able to do anything in unison (singing, family prayers, etc.). He does not like puzzles and is not a lego fanatic though I think some of his interests have been dictated by what was readily available to him during his early years when he was less mobile.

 

Does any of this require testing? Do they test kids who aren't struggling, exactly, with grade-level work.

 

My two big issues, I think, are: because of his slowness and inability to stay on task with anything involving any writing at all his school day takes all day and that needs to change. I have three other children. As it is we almost never get to all his subjects every day. If I'm not at his elbow, he pretty much won't do a thing.

 

The other is the niggling feeling that I am wasting his time with some subjects (we ditched FLL3 for this reason--he wasn't getting anything out of it) and not providing him with the opportunities he needs to flourish in other ways.

 

Maybe in some ways I'm looking for quick fixes here but I do wonder if something as simple as letting him type would be a game-changer for his education.

 

So, I'm willing to hear push back on the value of testing but telling me, "It's just a few trips" when his appointments are already like a second job for my dh isn't consoling :) I think I'm hoping I can read a few well-done books, tinker a bit with approach and curriculum and see a big change. But maybe I'm delusional :)

[UrbanSue]

UrbanSue, YES you belong here! :)

 

The thing I regret most with my dd is NOT getting the testing years ago when it crossed my mind. We only did it this past year in 7th. We could have saved SO many heartaches. I learned SO much beyond a label in that testing. They DON'T have to be behind to benefit from testing. GET the testing.

 

 

 

 

 

I see you already emphasized that a kid doesn't need to be behind to benefit from testing.

 

One of his physical medicine doctors did mention (after not engaging with ds AT ALL so this was a blanket statment) that we should look into a neuropsych eval because so many SB kids have LDs. We did, briefly, but it isn't covered by insurance as far as we can tell and we don't exactly have a great argument for why it should be. And we do not have any money right now. But maybe I'm not pursuing it the right way?

 

I'm still loathe to think about more appointments right now, but, again, happy to hear pushback.

[Heathermomster]

 

My two big issues, I think, are: because of his slowness and inability to stay on task with anything involving any writing at all his school day takes all day and that needs to change. I have three other children. As it is we almost never get to all his subjects every day. If I'm not at his elbow, he pretty much won't do a thing.

 

The other is the niggling feeling that I am wasting his time with some subjects (we ditched FLL3 for this reason--he wasn't getting anything out of it) and not providing him with the opportunities he needs to flourish in other ways.

 

Maybe in some ways I'm looking for quick fixes here but I do wonder if something as simple as letting him type would be a game-changer for his education.

 

So, I'm willing to hear push back on the value of testing but telling me, "It's just a few trips" when his appointments are already like a second job for my dh isn't consoling :) I think I'm hoping I can read a few well-done books, tinker a bit with approach and curriculum and see a big change. But maybe I'm delusional :)

 

Mom, FLL doesn't suit many children. Definitely change that up.

 

Try typing. If that doesn't work, look at text to speech software like Dragon.

[UrbanSue]

 

Mom, FLL doesn't suit many children. Definitely change that up.

 

Try typing. If that doesn't work, look at text to speech software like Dragon.

 

 

We have already quit. I'm not replacing it at this point. Everywhere I look people are saying he ought to love MCT but I can't justify the high price tag without looking into it more thoroughly. But I might just wait and do grammar again in a year or two.

 

He can't get his chair easily up to our one family computer so we'd have to do some logistical finagling for typing to work for him. But maybe I'll think about it . . .

[PeterPan]

nt

[Heathermomster]

 

 

We have already quit. I'm not replacing it at this point. Everywhere I look people are saying he ought to love MCT but I can't justify the high price tag without looking into it more thoroughly. But I might just wait and do grammar again in a year or two.

 

He can't get his chair easily up to our one family computer so we'd have to do some logistical finagling for typing to work for him. But maybe I'll think about it . . .

 

 

Maybe consider a cordless keyboard or a used Alphasmart Neo, which is very durable, lightweight, and run forever on AA batteries.

 

My eldest sibling was born with severe spina bifida and went blind at 8 yo when her shunt malfunctioned. Sitting up in a chair, limited movement with her hands and going blind seriously set her back. Anyhoo..

 

Books written by the Eides are great. Winton Grammar has a strong visual component. I wish I could be more helpful...

[UrbanSue]

 

Maybe consider a cordless keyboard or a used Alphasmart Neo, which is very durable, lightweight, and run forever on AA batteries.

 

My eldest sibling was born with severe spina bifida and went blind at 8 yo when her shunt malfunctioned. Sitting up in a chair, limited movement with her hands and going blind seriously set her back. Anyhoo..

 

Books written by the Eides are great. Winton Grammar has a strong visual component. I wish I could be more helpful...

 

 

No, thanks. I'm grateful for anything to add to my thinking at this point.

 

Sorry to hear about your sister. Care and life quality is so much better for kids with spina bifida than it was just 20 or 30 years ago. We're really grateful for all his doctors.

[Tiramisu]

I have a dd who had a spine problem that needed to be surgically repaired. In the process, it was discovered she had spina bifida occulta. I don't think there was any neural tube involvement, just bones maybe; however, looking back she seemed to have some weakness in her legs when she was younger and there was probably some long-term spinal instability. She is rather bright and tests very well. Handwriting has been her biggest problem.

[UrbanSue]

No, thanks. I'm grateful for anything to add to my thinking at this point.

 

Sorry to hear about your sister. Care and life quality is so much better for kids with spina bifida than it was just 20 or 30 years ago. We're really grateful for all his doctors.

 

 

Just realized, Heathermomster, that it sounds like I'm saying, "No, thanks," as in, "I don't like your advice." I meant, "No, no, don't apologize, your being helpful, thanks."

 

Sorry if there was any confusion :blushing:

[UrbanSue]

Ok, let's back up. A neuropsych is different from a regular psych. A neuropsych will have experience in how *medical* issues affect brain function. That's their niche. So they're going to be able to give you the EXACT analysis you're looking for. Your doc was right. For instance I think our neuropsych did studies on how chemo affect learning in students. That's their angle, the medical side.

 

Money I get. I won't tell you what all I gave up to save up $$ for dd's eval or what a bad point it hit us at. I'll just say I get it, and I'm saying *with the right neuropsych* it can make a huge difference. You're undervaluing what the information can do for you. My interaction with dd is NIGHT AND DAY better.

 

And btw, no low test scores here. She's never below grade level on ANYTHING (well except handwriting, haha) and has exceptional test scores. Lots of people here are in the same boat, with kids with astonishing abilities who also have quirks and things we needed help with.

 

It takes months to get into a good neuropsych. I suggest you start *looking* for one, follow up with whatever names that doc was giving you, and just get on some waiting lists. Maybe in a couple months, when you're able to get in, you'll be able to carve the time and it won't feel so overwhelming. I have to do that with my kids' stuff, because I'm pulled in different directions. But you have a chance to plan ahead here a bit and say yes, the appointment for his testing is coming in 3 months, that week we're going to trim back such and such to keep it sane. It will work out. You can do this. You WANT this info. Just make sure it's a good neuropsych.

 

But whatever, do as you wish. I'm not in your position. Just saying it helped us. :)

 

 

Sorry, for some reason I didn't see this earlier. This is encouraging. I will see who is out there. The figures I was hearing for what this would cost were well over $1000 . . . I can't imagine where that would come from. But I'll talk with dh.

 

Anyone lurking here around NYC/North Jersey who can give me some names?

[UrbanSue]

I have a dd who had a spine problem that needed to be surgically repaired. In the process, it was discovered she had spina bifida occulta. I don't think there was any neural tube involvement, just bones maybe; however, looking back she seemed to have some weakness in her legs when she was younger and there was probably some long-term spinal instability. She is rather bright and tests very well. Handwriting has been her biggest problem.

 

 

 

That's interesting. Spina bifida occulta is actually more common than the type my son has and most people who have it don't even know they have it. But I have heard other anecdotal stories of it causing trouble. Surely, if the vertebrae aren't properly fused, one would expect developmental difficulty.

[Heathermomster]

 

 

 

Just realized, Heathermomster, that it sounds like I'm saying, "No, thanks," as in, "I don't like your advice." I meant, "No, no, don't apologize, your being helpful, thanks."

 

Sorry if there was any confusion :blushing:

 

 

Don't :blushing: because everything is fine..

 

 

 

[PeterPan]

nt 

 

[UrbanSue]

The doc who recommended didn't even both writing a referral because he said no way would insurance cover it. Which only adds to my general feeling of his incompetence (we switched to a new doc for that need, btw but he, like all good docs, has a 3-month waiting list so we haven't seen him yet). All insurance is different--there's no way he could have known for sure that ours wouldn't work, I don't think. I'll start looking into it.

 

Thanks for your encouragement.

[Heathermomster]

I should have mentioned this yesterday, Often, but not always, dysgraphia and dyscalculia go together. I keep thinking of the parietal lobe's connection to math and handwriting.

 

The fact that your DS struggles with basic calculation but understands the big math picture is important here. Many individuals with maths disorder struggle with arithmetic but do well in higher order math. Work around that by giving your DS a multiplication chart. The book How the Brain Learns Mathematics by Sousa has been very helpful to me.

 

The fact that your son takes so long to write and never enjoyed Legos is telling. Definitely get your son typing. The discussion of mind maps and webs has come up a lot lately. Look into webs and mind mapping. Since your son draws throughout the day, mind mapping may appeal to him and there is software for that too... :001_smile:

[Tiramisu]

That's interesting. Spina bifida occulta is actually more common than the type my son has and most people who have it don't even know they have it. But I have heard other anecdotal stories of it causing trouble. Surely, if the vertebrae aren't properly fused, one would expect developmental difficulty.

 

 

She has SPD, too, and I've been starting to think SPD and dyspraxia (dysgraphia) are two sides of the same coin. In my reading, I remember coming across something that there's a relationship between sensory issues and cervical spine instability. And, I've also read that if there are problems in the lumbar spine sometimes there can be problems in the cervical spine....which all leads me to believe there's a connection that has to be explored. Someone needs to do some research on this.

 

I think there's a better chance of getting insurance coverage because of the SB. According to our NP, it can come down to the diagnosis as to whether insurance will cover it or not. If you wind up with a dyspraxia diagnosis of which dysgraphia falls under than that *could* be an aspect of the SB and as such you might get in NP eval covered.

 

Hey, Sue, we get to meet next month! Don't forget! :)

[UrbanSue]

She has SPD, too, and I've been starting to think SPD and dyspraxia (dysgraphia) are two sides of the same coin. In my reading, I remember coming across something that there's a relationship between sensory issues and cervical spine instability. And, I've also read that if there are problems in the lumbar spine sometimes there can be problems in the cervical spine....which all leads me to believe there's a connection that has to be explored. Someone needs to do some research on this.

 

I think there's a better chance of getting insurance coverage because of the SB. According to our NP, it can come down to the diagnosis as to whether insurance will cover it or not. If you wind up with a dyspraxia diagnosis of which dysgraphia falls under than that *could* be an aspect of the SB and as such you might get in NP eval covered.

 

Hey, Sue, we get to meet next month! Don't forget! :)

 

 

 

Thanks for the reminder! I have the registration sitting here on my desk.

 

You all have been so helpful. I did a lot more reading last night and there is definitely a lot more information about there regarding why SB kids have learning disabilities than there was 8 and 9 years ago when we were first looking at all of this. I've always known that my ds wouldn't probably do well in a typical school setting but he never seemed like he had anything really serious going on either. Honestly, I think everyone who knows us would think I was crazy if I suggested he had learning disabilities which is why I came here.

 

I hadn't ever read much about dyscalculia until last night and I was sort of chagrined to see that ds fits every single "symptom" in the list on Wikipedia. Except that he's pretty good with maps.

 

So we're going to look into evaluation options and, in the meantime, there is so much good information out there that I feel like we can be moving forward at home in a positive way while we wait for appointments.

[UrbanSue]

I should have mentioned this yesterday, Often, but not always, dysgraphia and dyscalculia go together. I keep thinking of the parietal lobe's connection to math and handwriting.

 

The fact that your DS struggles with basic calculation but understands the big math picture is important here. Many individuals with maths disorder struggle with arithmetic but do well in higher order math. Work around that by giving your DS a multiplication chart. The book How the Brain Learns Mathematics by Sousa has been very helpful to me.

 

The fact that your son takes so long to write and never enjoyed Legos is telling. Definitely get your son typing. The discussion of mind maps and webs has come up a lot lately. Look into webs and mind mapping. Since your son draws throughout the day, mind mapping may appeal to him and there is software for that too... :001_smile:

 

 

 

A couple of questions . . . ds fits all the VSL profiles exactly except that he isn't interested in Legos (he kind of likes Tinker Toys but he is more apt to build one or two very simple things as a costume component for imaginative play). I mean, maybe the VSL stuff is leading me kind of astray because he fits more closely with dyscalculia and, maybe, the little bit I've read about stealth dyslexia (his reading is and always has been super strong). So . . .what's my question . . . I guess do you think that focusing on my initial thought that he is a strong VSL is a red herring as regards his real issues and I should focus my energy elsewhere as I try to work with him at home?

 

Also, for typing. Is the the Alphasmart the best way to go? I think we could get pretty much any computer-type thing we want paid for by a family member so cost is probably not an issue. But if I'm wrong, the affordability seems like a huge plus. It also seems like a huge boon that it is very distraction-free. Is it the best option? Or would you go in a different direction if money were no object?

[PeterPan]

nt 

 

[Tiramisu]

 

 

Thanks for the reminder! I have the registration sitting here on my desk.

 

You all have been so helpful. I did a lot more reading last night and there is definitely a lot more information about there regarding why SB kids have learning disabilities than there was 8 and 9 years ago when we were first looking at all of this. I've always known that my ds wouldn't probably do well in a typical school setting but he never seemed like he had anything really serious going on either. Honestly, I think everyone who knows us would think I was crazy if I suggested he had learning disabilities which is why I came here.

 

I hadn't ever read much about dyscalculia until last night and I was sort of chagrined to see that ds fits every single "symptom" in the list on Wikipedia. Except that he's pretty good with maps.

 

So we're going to look into evaluation options and, in the meantime, there is so much good information out there that I feel like we can be moving forward at home in a positive way while we wait for appointments.

 

You are really describing my oldest, without SBO. She did extremely well in school, in standardized testing, and basic cognitive testing. The one thing I was ever told to work on with her was basic facts because she struggled so much with speed drills, but I knew she new her facts well. I really thought there was something going on but no one took me seriously except one teacher, who attributed what she saw to ADD. It took until she was 16 to get the CAPD dx and 17 to figure out the visual and visual motor issues that are tied together in some way with the slow processing.

 

I so very much wish I sorted this out sooner, so I highly encourage anyone with that feeling deep inside that something's off despite everyone saying it's fine to get a proper evaluation. It's certainly harder for outsiders to pick up on if they're otherwise really bright.

 

One thing I remember reading is that kids with SB also are more prone to depression, and that can go along with anxiety. My SBO kiddo is my one least likely to be depressed, but with my oldest, I think there has been an emotional effect from the processing issues. Her neurologist thinks thay are causing her to become anxious. At the same time, because it took so long to figure out what was going on, for most of her life we gave her the clear message that she should just try harder, when in fact much was out of her control. And that was on top of her trying to manage a fairly heavy academic load, which would have been tough for her in any case, without us on her case all the time. She's really a great kid, but I do wonder if she would have been relaxed and happier if we could have made proper accommodations earlier on and supported her instead of adding to her stress. I know my life would have been a lot less stressful, too. But God has a plan for everything and I'm sure He will use this, too.

[Heathermomster]

A couple of questions . . . ds fits all the VSL profiles exactly except that he isn't interested in Legos (he kind of likes Tinker Toys but he is more apt to build one or two very simple things as a costume component for imaginative play). I mean, maybe the VSL stuff is leading me kind of astray because he fits more closely with dyscalculia and, maybe, the little bit I've read about stealth dyslexia (his reading is and always has been super strong). So . . .what's my question . . . I guess do you think that focusing on my initial thought that he is a strong VSL is a red herring as regards his real issues and I should focus my energy elsewhere as I try to work with him at home?

 

Also, for typing. Is the the Alphasmart the best way to go? I think we could get pretty much any computer-type thing we want paid for by a family member so cost is probably not an issue. But if I'm wrong, the affordability seems like a huge plus. It also seems like a huge boon that it is very distraction-free. Is it the best option? Or would you go in a different direction if money were no object?

 

I mentioned the NEO because they are cheap and durable and would likely fit on his wheel chair tray. I love the feel of the NEO's keyboard and there's nothing distracting on it. After about 5 minutes, your other children will look at it, sniff, and then move on. The difficulty with the NEO is that the screen is very small. To get info off of it, you walk the NEO over to computer, connect the NEO with a USB cable, open any word processor software, and hit send. The NEO is basic and has an IR function that we've never used. You'll need to read about that.

 

In your son's case, I'd be tempted to purchase an ergonomic, wireless keyboard from Walmart and allow him to try that out. Return the keyboard if that option isn't viable. It would seem that viewing the computer monitor might pose a challenge if he's backed up and away from the computer desk, You could try to locate a pivoting monitor arm to adjust the computer screen closer. You can also increase the font size of the software.

 

My son has dyscalculia and has won the grade level geography bee, every time that he has participated (twice among 65 students). He can also read a clock which is a plus. Money is a nightmare. He learned his times tables in 5th grade using c-rods. I brought him home 2nd semester, 5th grade.

 

VSL is a term that is widely used and quite frankly, I can't figure it out. I consider creating and making a costume component out of tinker toys to be VSL. There is a process that goes into that activity that is just as valid as building with Legos or pulling apart a toaster to see what's inside. If your son has fine motor issues, building with Legos may be unpleasant for him.

 

I think in terms of multisensory instruction. About a year ago, DS took a learning styles quiz and he is auditory, kinesthetic and visual. He has always played with puzzles and built things. He's awesome on computers. He's primarily auditory and there's nothing linear about my child.

 

Basically, try and find a learning styles quiz. Have your son take that and go from there. OhE describes these kidlets as a huge contradiction and that is so true.

 

Blessings and have a great weekend! H