Thank you/various thoughts on the visual processing posts

First, I think your reading/writing skills are pretty good. Unless you began your intervention program/school with pretty good skills, I’d say someone there did something to help you. As you practice & practice, so will your skills continue to grow.

Lots of people, me included, wish that there was a definitive way to diagnose and predict treatment success for any learning activity. We both know that this isn’t possible at this time because human behavior is so incredibly diverse as to resist a bottleneck philosophy. That being said, I believe that prudent people work within boundaries when treating others for their own profit or within a government organization with tax funding. Our litigious society demands it.

That being said, I need some “reason” to believe what I do believe. Others may only have the need to “feel” what is truth. I think my feelings lead me toward discovery of truth, but do not provide evidence of what is the truth. Sometimes, ironically, truth leads me to a discovery of feelings. What, then, is truth?

Truth is relative to one’s experience. Truth is contextual to the subject being studied. Truth is dimensional within time and space. “Every truth has two sides; it is well to look at both, before we commit ourselves to either.” [Aesop]

Reasoning is a difficult skill for many people…but that is a different subject.

One huge issue with assistive technology and research is the obvious one: in the time that it takes to do a single study, the technology has changed significantly so taht the results of the research are no longer valid.
Consider speech recognition — most studies still show that the frustration factor and the training task make it an impractical solution for most LD kids (among other things, the software is designed to recognize adult male voices and the training task is very language intensive and therefore highly frustrating for kids with language difficulties). By the time one persone does a study though, there’s a newer improved version of software out.
Speech synthesis has similar issues. THere’s synthesized speech that is mechanical and not too accurate — those “reaidng pens” are a great example. They’re helpful… to a point. They make lots of mistakes, though, with harder words and they can’t add inflection. On the other hand, there are some far more sophisticated speech engines out there which not only can pause at commas and rise & fall for question marks and periods (and I love what they do with exclamation points), but you can record pronunciations of words that it doesn’t “know.” This stuff is far more useful for a college kiddo who’s got a novel to read and doesn’t have the fluency skills to knock off those three chapters tonight.
And finally, most folks on this board are dealing w/ younger students — assistive technology is still far more useful as an enabler for older students. Its use in instruction is in the prenatal stages… and all of the arguments about what works for whom, when, and how apply ever so much more so to using technology.

PT- First, your written “voice” is articulate and intelligent so it seems you are doing quite well.

I agree with some of what you’ve said. In the past 10 months I’ve interacted with 3-4 neuropsychologists, 2 psychologists, 3-4 reading specialists, a psychiatrist, a behavioral optometrist, an opthamologist, 2 speech therapists, 2 OT’s and a 3rd grade class room teacher (and a partridge in a pear tree!!) all on behalf of my son. And I’ve concluded that almost noone can integrate the knowledge in these various but related fields. (Except some of the professionals that come to these boards!>>) Each person is on an island of their own experience and tend to view my ds’s issues through their own paradigm. I was shocked to discover that the people at a very highly regarded school we’ve looked at for LD kids have never heard of Lindamood Bell. I think you are right when you say that folks get comfortable with what has worked for them in the past . Even the neuropychologist we hired for an evaluation didn’t bring it all together.

This has left the burden of putting the pieces together to me. And the advise and counsel I’ve found on this board has been invaluable.

Karen, I think this is because we really don’t know as much as we wish we knew and you wish we knew. The brain and the central nervous system is a highly complex area of study. We did not have the technology to study as effectively until relatively recently. Neuroscience is busy unraveling and shedding light on areas that were difficult to study. The researchers who study dyslexia and other learning problems from an educational point of view, as well as psychology, do not all agree by any means. The state of knowledge is just too young. I can believe that you would get different analyses from different neuropsychs. Yesterday, for example, I read Denckla’s comments on sensory integration. She does not buy into the sensory integration deficit theory. She is a prominent M.D. researching learning problems at Kennedy Kreiger. Yet, parents come to their child’s school with a sensory integration diagnosis from a private source and want S.I. therapy. Whom do you believe?

Sometimes eager parents have so many programs going at once that when their child does make the leap and connect the dots, they really don’t know what part of what they were doing allowed the progress. Research is slow and tedious if it is meticulous and going to yield useful information. Someday we may have learning problems subtyped and we may know pretty much exactly what to do for each child. right now we do have good approaches that help many children.

There will always be the children who defy our categories and our approaches
because children are human beings, not machines. The affective domain has a great deal more influence over educational outcomes than we often acknowledge. This may be why some gifted children are mediocre students (not due to LDs) and why some average kids excell. The individual affect/temperment issues, personal work ethic can and do often make all the difference for a person throughout life. We can only control so much of this area.

PT,

I worked for years as a nurse. When I entered the world of education I felt like I landed on a distant planet. The area of diagnosing problems that relate to the brain has been around for a long time yet, very little of that knowledge is used to help children with LD. I worked with people that after suffering brain trauma or stoke developed RAN issues, short term or long term memory issues, fine motor issues and so on and so on. The way these people are helped is through therapies, speech OT and PT. I have seen miracles happen.
Children with LD get treated almost the exact opposite of people with brain injuries. We put them in a sped class with a dumbed down curriculum (my experience) and maybe if they are lucky they get therapy once per week.

Like I said a different planet.

Absolutely I agree with you, and in no way were my comments meant to be a criticism of the members of our team. I’ve said repeatedly myself that my son is a human, not a machine, and that’s why its frustrating but true that we can’t easily define what causes his problems. He’s an onion, we peel away one layer and discover other strengths and weaknesses. Remediate the reading and the disorganization shines through. Thanks for being one of our resources.

Let’s not forget that in the medical world people PAY for the services they receive, directly or through their insurance companies. However, insurance companies are becoming cagier. They are placing limites on what they will pay for, authorizing “X” number of sessions, etc. These 1:1 therapies are timeconsuming and very expensive. A friend of mine recently related her frustration with her mother’s insurance. A stroke robbed her of speech. My friend, a nurse, had taken it upon herself, to try to retrain her mother and teacher her to speak again. She was making progress when a second stroke occurred. After this, the insurance company washed their hands. The won’t pay for therapy. My friend believes that her mother could be helped, but she had to return to her home, job and family, so mom sits in the residential center and is basically taken care of. My friend visits her about twice per year, all the way across the country.

Is it any surprise that public education is not leaping out to provide hour after hour after hour for perhaps hundreds of hours of expensive 1:1 therapies, when insurance companies have no problem saying “no?” I know the argument that the thousands of dollars spent now may save more thousands later, but those thousands of dollars can be hard to take from the budgets now, esp. when we don’t know the outcome. Lovaas therapy has a 40-some percent success rate. This does not mean that 40% become totally normal, just that they won’t stand out. So what happens to the 50some percent that are not benefitted? At what point do their parents say “ok” when the IEP team seeks to discontinue the therapy due to lack of progress?

It seems in education that we can NEVER discontinue for lack of progress if the parents oppose. Medical settings are private, so they can draw lines and say “no.” Public situations are much more touchy. How do we know what do do, when to say “no,” and when to discontinue? These are tough calls.

My son got lots of one on one from a reading recovery teacher that didn’t teach him to read.

The money would have been better spent providing him therapy.

It is all about efficiency and what works. This is true everywhere. Money is wasted by addressing the symptoms of the problem through academics and not dealing with the actual issues. My tax dollars are being wasted and I don’t like it one bit.
We assign broad labels but what we really need is define the true core deficits in each child such as ran, fine motor etc. With these information, much could be done.

Therapy is not rocket science. Much of what is done could be done through consultation with an experienced therapist by the teacher in the classroom or in the home. It could even by done through an assignment list given to the student for them to do in the classroom or at home to supplement the once of week therapy that is implemented. The teacher wouldn’t even have to do anything but make sure it was done. It would be more beneficial than the current busy work many children endure.

If your friend was closer she could help her mom herself.

What is Lovaas therapy and where did you get that statistic?

Anitya, I agree with your sentiments. Each and every point you made seems valid. Some children just defy todays labels. I have been told a few times that my two boys don’t neatly fit in any given box, they both however have been given “labels” that come closest to describing their strengths and weaknesses. Both boys have struggled since the earliest days their progress has been very slow, yet still they keep on going. My oldest sons teacher recently likened him to a timex watch, he takes a licken and keeps on ticking. She is amazed at his persaverence. He could be doing very poorly but still shows up with a good attitude and just keeps on working. All his teachers have commented that although he is not an A student he is the type of student they enjoy having in class. He is a very hard worker and always very polite. Both boys have been through a variety of therapies and sometimes several at the same time. Although I was told by various experts that the boys will never do well academically and the focus needed to be life skills they are defying these experts. We were told when the youngest was in preschool that he is Austic and Austic children are retarded to forget academics. My oldest son currently a freshman in high school is taking almost all regular education classes and doing fair. He recently commented that what holds him back the most and has done so in the past was his weak reading skills. He has made many strides in this area recently as has his younger brother. I have no clue why the two boys all of a sudden are making such progress or why they just never gave up perhaps its just their tempermant.

It has become the therapy of choice for many parents. The published stats on the success rate are around 48%. My county has hired specialists “in house” to provide therapy, however they train parapros. I spoke with one of the Ph.D.s in my county and their results were in the 40some%. This means the child won’t stand out in a group, not that the child is “normal.”

Essentially it is a highly intensive, 1:1, behavior modification program done in the home for up to 40 hours per week with therapist there with the child every minute shaping and reinforcing increasingly appropriate behaviors.

I wasn’t talking about behavior modification therapy. Although behavior modification is a piece to all of this, it is just one piece. It is not what they use with people with brain injuries. They use specific therapies targeted at specific deficits. The only place this is being done in the LD world is by a few of us parents who have worked very hard to figure out what types of therapies our children need for their specific deficits.

Hi folks,

I wanted to thank everyone for their responses. So I don’t clog the board up with single replies to each post, I thought I would take a shot with just this post even though it will be extremely long.

Susan - Thank you for your kind words about my reading/writing skills. I was very lucky that I had a writing tutor when I was an undergraduate, the dark ages:)), who helped me immensely. I can’t even tell you what he did but whatever it was, it worked and for that, I will always be grateful.

You’re also correct about the reading remediation as no experience is ever a complete failure. Sorry, my black and white thinking that I try to keep suppressed every now and then escapes:))

I also agree with you about living in a litigious society and if I were in your position, I would definitely work within those boundaries. But like you, that would not be enough for me.

Sue - Actually, regarding the studies I found on the adults populartion regarding OCR/Speech Synthesis Software, one of them used the Kurzweil 3000. The other one did use AT that is probably now outdated, the Bookwise Machine. But still, for this type of software, since these studies showed that not every one would benefit from using this software, I can’t see becoming totally invalid although clearly, some updates are needed since they are four and five years old.

You’re right, speech recognition software, is a whole other ballgame and I definitely agree with you that to date, it is not really an effective piece of assistive technology. What people also don’t understand is that if you have executive function impairments, as many kids with NLD do, it is definitely not the AT for you as it requires planning to form your thoughts before dictating.

I have not read the studies that I referenced in the previous post but am curious. This is a FWIW type of deal as I don’t claim it to be fact although some people would:)) Listening to a computer program provide the sounds of various letters helps me tremendously as I can’t do it on my own.

Karen- Thank you for your kind words. You have uttered the key phrase in stating “Each person is on an island of their own experience and tend to view my ds’s issues through their own paradigm”. That is why it is so hard to find the right remediation as you have to sift through so many theories and philosophies. And that school not having a clue about the L&B Program? Unbelievable!

It sounds like you have had to jump through hoops in getting help for your son. You’re right, thank goodness for these boards and what is so ironic about them being invaluable is they are free. It is not like these professionals have alot of extra time on their hands either so that makes me appreciate what they do even more.

Anitya - What you said to Karen - “I think this is because we really don’t know as much as we wish we knew and you wish we knew” is so true. I admit that sometimes I want experts to know everything and it just doesn’t work that way.

Also, asking the question of who the heck do you believe is a good one, especially if the folks involved who are presenting contradictory opinions all are very reputable people like Dr. Denkla. I know sometimes I will read contradictory information and all sounds good but then I simply have to stop because I am too overwhelmed and just can’t make sense of it.

Linda - Thanks for sharing your experiences as a nurse. Yeah, I never understood since LD has alot of similar symptoms to the conditions you mentioned, why some of the same therapies haven’t been explored more vigourously.

Interestingly, some sites for cognitive retraining software are now also claiming that it can also help people with LD. I did email a person on one site and asked if there was any research backing that up and this person admitted there wasn’t any. So I did want to be up front about that.

But it seems to me, it couldn’t hurt to try these programs if you can afford to do so, which I realize is a big “if”. I also know anecdotally, when I have worked on tasks that require visual spatial skills, an area of great weakness for me, my problems aren’t miraculously cured but they still seem to improve.

Lisa M - That is great your boys are so persistent and seem to be defying the odds. I love stories like that and you also deserve alot of credit as they couldn’t have done what they did without your support.

Thank you all for some great posts. I’ll have to go back to make sure I haven’t missed anybody.

PT

You asked what Lovaas therapy is? I tried to answer.

I think we have a fundamental question. Should schools provide no end of intensive therapies to try to fix a child? The medical world surely does not do this anymore. As I stated, the insurance companies deny or place limits on what they will pay for.

It becomes very difficult to determine what is reasonable, who should provide what.

there is no reason parents should not pursue their dream and do all they can, but the public dime does need to be considered and some parameters must be implemented. Just my two cents, though I know many will want schools to do everything and then do more in an effort to fix every child.

In 1975 or whenever PL 94-142 started this was not the expectation. Things evolve in a direction until an extreme is reached, then things generally change. This is live in the lower worlds.

I was just trying to explain how it could be done with very little money being spent. It requires that people change there thinking about what LD is. I don’t expect that to happen any time soon.

It is about more than money. It is about addressing problems rather than providing kids with services that often don’t help but rather keep them in the system their entire lives. It is always cheaper to be effective.