tagline
WETA

Search LD OnLine

Get our free newsletter

advertisement

Forums
IEPs and Legal Issues

reading diability? dyslexia?


Author Message
Joined: Feb 11, 2009
Posts: 8
Other Topics
Posted Feb 13, 2009 at 3:55:02 PM
Subject: reading diability? dyslexia?

Hello~
My daughter, (6) is diagnosed with a reading disability. The doctors said it is unclear whether it is a working memory deficit, a core problem of dyslexia or an attentional issue. They are recommending a trial of stimulant medication which I'm guessing may bring to light the answer to the dyslexia cause or working memory question? My dd has no symptoms of attentional problems though. Her school reports of staying on task, social skills, emotional maturity, etc., are stellar. (However I think I do understand why they are looking at this meaning the working memory has an attentional problem)
I'm confident in the assessors/doctors but want to know if others have had this issue of what is really going on or know of others who may have a similar experience.

(Also, to throw another issue in the pot, my dd was diagnosed with Lyme disease and 2 co-infections some time ago. Her past treating medical doctor believes her cognitive impairment/learning issues will resolve with further appropriate medical treatment)

Thanks in advance for any input!!

"Over every mountain there is a path although it may not be seen from the valley" Unknown author

Back to top Profile Email
Mandi
Joined May 05, 2008
Posts: 424

Other Topics
Posted:Feb 13, 2009 9:19:05 PM

I wouldn't put my 6 year old on stimulants. The effect of stimulants is no different in those without ADHD as it is on those with ADHD. If anyone doesn't believe that they can just ask Drhd because he will back up that statement becausse it is fact. These stimulants have some nasty side effects. They killed a good friend of mine when i was 13. They caused a couple other people i know to develop tourrets like symptoms that never went away. They have caused people i know to wind up hospitalized for weeks due to delusions which they never had before taking the stimulant medication. They can cause heart problems and failure. Massive weightloss (which they did to me. I went from 110 pounds to under 95 pounds in less than 3 and a half weeks. in my mid teens, bless ritalin.) They also have been proven to with long term use cause the frontal lobe to shrink.

They claim these stimulants (and most likely what they want to give your child is ritalin) are harmless and oh so mild. But the fact is they are not. Studies have proven that the effect on both the adhd brain and the effect on the normal brain are the same. Infact there is no scientifically conclusive hard measurable evidence that has yet been presented of an organic nature that ADHD even exists. Theories are frequently presented as likelyhoods yet none of them seem to pan out. And other studies show that actually there are no differences at all. Studies also show the effects of ritalin on the brain are the exact same effects that cocaine has on the brain. Only enhanced.

If you feel your kid stays on task, if you aren't having serious problems with her at home if she seems ok to you and is just having trouble with reading i would look into both lymes and the reading disability but putting a child you feel is behaviorally sound on a drug that could in rare cases cause death, is absolutely not ok.

As your point about emotional maturity, those with ADHD do not actually have any developmental issues. Those would show up in organic matter. That is a myth. How do i know? Right... I have ADHD. Don't trust the experts trust yourself. This is your kid and don't let them scare you into giving her a drug like that until all other avenues have been explored researched and exhausted and even then, sounds like she isn't a severe case and it seems that perhaps you could point out to them that it is supposed to be standard practice before reaching for the prescription pad with ADHD patience to try behavior modification, etc first. And then if i were you i would politely request the name of the pharmaceutical company that bought them their summer house. But, that is just me...

First try some reading help while doing the medical treatment your doctor reccommends would be my advise. If after some time it doesn't work and your medical doctor says "gee maybe, it isn't what i thought..." then *MAYBE* try the drugs after you try other things like oh herbalism perhaps and various behavior miodifications and reading programs.... And if and when all that fails in a few years from now if it is still a big problem, revisit the issue.

Your kids sounds fine and completely non ADHD. Pill hyping psychos passing themselves off as experts... They think she may have ADHD but as they aren't sure lets put her on a drug that could kill her... Please ask them how much money they make per year from the pharmaceutical companies and then if i were you i would tell them to bite me. And then.... I would find an actual expert. One that can actually tell you weather her behaviors and inability to read are ADHD behaviors or conclusively that they are not. If they are on the fence then obviously she is bordering so closely on normal, or is normal, that medicating is over kill as a treatment. Disgusting drug pushers... Oh and lastly you can ask your expert why he isn't working for the cubian drug cartels. He will likely say "cuz the pharmaceutical companies pay more."

Lastly, the brain develops from birth up until we are in our mid twenties. The effects of these drugs on brain development is hardly understood and it reallyy isn't even known. I would consider that a huge risk to take when no one is even sure she has it based on the behaviors she presents with as ADHD has no actual organic element what so ever and is diagnosed solely based on behaviors. I wouldn't take that risk... Not till all other avenues had been tried first.

Best of luck!

Back to top Profile Email
London's Mom
Joined Feb 11, 2009
Posts: 8

Other Topics
Posted:Feb 13, 2009 10:57:38 PM

Hi Mandy~
I really appreciate your response. Your concern seems very genuine and I'm so sorry for all you have experienced and had to go through!!

I can really relate to what you are saying about kick backs and all concerning a rather large part of the medical community. Again, I appreciate your view, however, the doctors that are recommending a trial of stimulant meds are in no way connected to the medical community or pharma. Both doctors are independent - one is a neuro psychologist and the other an educator. They view my dd as an extremely happy, well adjusted, unique in personality and confidence and gifted with a VCI of 129(SS), but a relative weakness in her working memory at 103(SS). Perceptual reasoning is at 118(SS). Her having many symptoms of dyslexia but not actually fitting that mold is the puzzle I guess. They were very upfront in that they just don't know the cause or specific dx but just the same the effect is there. Everyone all teachers, professionals and others spending time with my dd, agree she has no behavioral problems and really she is quite to the contrary. I believe the issue is more a cognitive impairment NOS and the desire for her to be able to reach her full potential is the concern of the doctors.
It was explained to me that the possible side effects of stimulant meds are far less of a risk compared to the likely side effects of issues due to the working memory problem...mostly self esteem and frustration from not being able to show what she knows and restriction of learning as well as lack of achievement is specified areas according to what her actual abilities are. Time is of the essence from what I have read and been told by the respected pro's regarding the reading disability. But don't think I don't hear you also!! What you have said here is certainly a valid and valuable position! Thank you!

How are you doing after all you have been through? I hope all is well!!!
Thanks again for your input!!

Best wishes~
Jlynn

"Over every mountain there is a path although it may not be seen from the valley" Unknown author

Back to top Profile Email
Mandi
Joined May 05, 2008
Posts: 424

Other Topics
Posted:Feb 14, 2009 8:26:37 AM

That makes even less sense. You can't medicate people into being good readers. Not even with Ritalin.

I *do* have dyslexia. And, the rest of what you describe about her *does* actually fit fairly well for someone with dyslexia. Difficulty with reading, otherwise fairly sound considered fairly intelligent by those around her it seems insane that she can't read. I would guess then as i am no expert that it's a combo of dyslexia and perhaps stuff from the lymes. So try the orton guillingham method you don't need the drugs and i think you may see things get all nice and let the doc treat her for the lymes.

Best of luck.

Back to top Profile Email
Mandi
Joined May 05, 2008
Posts: 424

Other Topics
Posted:Feb 14, 2009 8:16:21 AM

That makes even less sense. You can't medicate people into being good readers. Not even with Ritalin.

I *do* have dyslexia. And, the rest of what you describe about her *does* actually fit fairly well for someone with dyslexia. Difficulty with reading, otherwise fairly sound considered fairly intelligent by those around her it seems insane that she can't read. I would guess then as i am no expert that it's a combo of dyslexia and perhaps stuff from the lymes. So try the orton guillingham method you don't need the drugs and i think you may see things get all nice and let the doc treat her for the lymes.

Best of luck.

Back to top Profile Email
London's Mom
Joined Feb 11, 2009
Posts: 8

Other Topics
Posted:Feb 14, 2009 12:34:35 PM

Hi again Mandy~
I don't believe that the pro's are saying my daughters' intellectual ability or social/emotional functioning is in the 'moderate range" as you have indicated. To the contrary actually.
Her IQ scores are from the Superior range to the High end of average. She has quite a bit of scatter in her achievement portion of testing ranging from 5.10 to >21.00(age equivalence), Grade Level from K-9 to >18!! So, I believe the pro's want to put together a plan wanting to avoid the common self esteem problems that usually come from not being able to access abilities and the behavior problems that also accompany that. They want to preserve her bright happy personality, excellent self image and love and desire of learning. Not having a magic wand on how to do that they are basing their collectively 50 yrs of professional experience and opinion on available treatment options that they have experienced success with. This in addition to reading therapy.

I respect your personal opinion and feel bad for your difficult experiences but I'm not here to debate medication or the best way to overcome my daughter's reading disability. It seems the waters have gotten a little muddied here. My question was whether there are others here that the cause of learning disabilities issues are in question.

Best wishes~

"Over every mountain there is a path although it may not be seen from the valley" Unknown author

Back to top Profile Email
London's Mom
Joined Feb 11, 2009
Posts: 8

Other Topics
Posted:Feb 14, 2009 7:25:08 PM

Hi again Mandi~
I forgot to ask you in my last post...what is the definitive scientific test for dyslexia? Since you said in your post "I *do* have dyslexia.", I was wondering the absolute scientific test or how you know this for fact??

Thanks!!
Jlynn
[Modified by: London's Mom on February 14, 2009 07:26 PM]

"Over every mountain there is a path although it may not be seen from the valley" Unknown author

Back to top Profile Email
Mandi
Joined May 05, 2008
Posts: 424

Other Topics
Posted:Feb 14, 2009 10:17:22 PM

Hmmm I am not entirely sure but it is measurable. Dyslexics have ttrouble with visual recall to some degree someone else could probably explain it better. There isn't a drug for it. Dyslexics, tend to turn their letters around write backwards like mirror writing at first once they start to begin to get it. You will notice too, if you read my posts that i make some very weird spelling errors. The reason is because as a result of being dyslexic, i had to find a different way to learn to read. I was about 10 years old when i learned to write my own first name. It took me an other year to stop reversing the letters when i wrote it. I have an iq of over 150... Well over. I am not trying to brag, but you must understand dyslexic people are often extremely intelligent. I have discovered with myself, that it takes me longer sometimes to figure out some things. Because, my brain works in such a way that first i have to figure out how it breaks apart and then reconstruct it. But such a way of thinking also provides me often with a far better understanding of things in the long run. If that makes any sense to you at all?

Most schools today teach a method of reading that is based on memorization of the visual image of a word. Most kids can learn like that because they are visual learners. But for someone, who has trouble recalling the visual or memorizing the word's "shape" it becomes harder becaquse dyslexics have to break everything down. Sound by sound and then rebuild it. I learned to read using a phonetic method. The Orton Guillingham Method. I highly reccommend it. It took time. But once i had learned to read i was about 3 years behind. I did 4 years of work in 1 year after i could read. I owe my teachers of that method everything that i am. Reading is the most crucial thing any human on this earth can learn. Mathematics who gives a crap? Science... who cares. But literacy.... Literacy is all important because anything you want to know, you can learn in your own good time in your own way at your own rate in accoedance with your own interests and you can pursue it as far as you want to go so long as you can read.

There are 3 types of dyslexia i don't recall the details anymore, because that part of my diagnosis, i could actually understand and accept. It makes sense to me from logical perspective i have evidence for it. I have old papers where i turned all my letters around. The dyslexic brain has to almost be re-wired ina sense, it requires a repetition of connecting each symbolic letter (atleast in my case) with a sound. I am an auditory learner though, I don't know what sor of learner your daughter is. Some people have to see things to learn them. Others have to hear them to learn them. Others have to touch them and be very hands on about them to learn them. That is why i like Orton Guillingham. It has it's visual auditory and kinesthetic parts.

Dyslexia,is very interesting because i am now studying epigraphy, (I am an archaeologist) In ancient egypt, (My focus) The ancient scribes had no wrong direction to write in. Hieroglyphs can go left to right or right to left. The "letters" or pictographs, can also face either diriction. They can also go up to down or down to up. There is no wrong way to write. Our society, has very concise rules we always write right to left and our letters face a certain direction. A good way to tell if someone is dyslexic is to watch their writing. And their spelling. If she has trouble connecting and memorizing the visual picture of a word and connecting it to the sound of the word she may need to learn how to build the word piece by piece. Which is where phonetics comes in. Which is why, you will see when i make a spelling error (if it isn't a typo) It is, wrong because, i can't recall how the word should look and so i spell it phonetically.

I was way above grade level too in alot of things when i was little and on a couple things so far below where i should be it wasn't even funny.

Stimulants, include coffee, Coffee and the medicine they would want to give would pretty much do the same thing. Only coffee has fewer side effects and is much safer. It is also milder. Dyslexia, leaves behind hard evidence in one's writing. To this day i still have to take every word i read apart phonetically. And i have to spell every word the same way. I read about 4 seconds slower than my mother does who does not have dyslexia. Because of that. The thing though, is i am a grown up. I have spent years and years and years perfecting this skill. This form of compensating, doesn't happen over night. Often with dyslexics it doesn't make sense for a long time then one day, something just clicks with the constant and continuous repetition of phonetics being grilling into their brain suddenly something clicks.... And they can start to read. The only reason i can write normally today and not turn my letters around. Is because, my teachers used to make me write my letters in a box of sand. And i had to trace it in sand the right way over and over and over and now i always go back to that sand in my mind when i write my letters and now it is extremely rare and i have to be either very ill or very tired or very very drunk to turn letters around. It has become seecond nature. My dyslexia doesn't hold me back at all. Beecause i found a way around it.

I am sure everyone wants to keep your daughter feeling good about herself here is what i personally would do if i had such a bright daughter as you have.

1. I would listen to my pediatrician and treat for lymes and see how that goes and see that treatment through to it's completion.

2. I would get a private tutor at home in a private place (What makes kids feel bad is having too much attention publicly spent on them. If other kids are not having the same attention, or learning the same way then she gets looked at by them funny and starts to see herself as being other than which soon becomes less than.) It is a good idea to avoid that scenario. So hire someone private to tutor her at home a few days a week and practice her reading with them perhaps someone trained in the orton guillingham method or maybe depending on her learning style there is some alternative method that might be better.

3. I don't know where you live but i am from MA, And there is a summer school program i know of and maybe you can find something similar where you are or use this one (if it is actually still around...) The Carrol School, i don't know how much it costs or if it or if there is something similar like it if there is financial aide, but it is best to make her appear as normal as possible to her peers. And in private, where it is not going to be a humiliation deal with the reading issue if she is pretty much otherwise normal bright and happy which is how it sounds. The summer school program i remember at Carrol, was actually fantastic. Small classes mornings dedicated to academics and afternoons slightly more geared towards more fun activities. I always loved photography there. I went there when i was a bit older than your daughter. Such a summer program might be a good way to ttry to deal with this so that she can keep up.

What else can i recommend??? Flash cards! Make a pack of flash cards, letters and their sounds, go through it with her every day atleast once if she is dyslexic especially if she is an auditory learner this will help her not immediately but, over a little time (and anything you try will take a little time) Help her "sound out" the words, letter by letter and syllable by syllable. There really isn't a drug for this sort of thing... Even the drugs they recommend for attention, don't actually do anything that in any way affect attention. For some though, an energy boost can help them to sustain their attention longer, but in cases of actual disinterest, what good does it do to fill them with drugs that don't extend attention but simoply offer the energy to do so should they have in cliniation to apply that extra energy boost to the task at hand? In the end there is really only 1 proper cure for lack of attention and sustained attention, a more interesting more attention grabbing learning environment.

That is where i would start if i were you i am not and you know way better than i do. You know her. I don't. But as a dyslexic person who made it through.... That is what i have to offer. You can't medicate someone into literacy it is just a clinical impossibility really... I don't know if your kid turns her letters around or not. I don't know what she does. Or how she is different if you describe more about it how she writes and how she reads and how she doesn't i *may* be able say weather or not it is likely to be dyslexia or if it is likely not but i can't say definitively. I am an archaeologist not an LD expert. But i am dyslexic and i do remember myself as a kid and i have seen some of my old papers and what not and i do recall the arduous process of learning to read and write... So maybe i can halp some atleast....

Good luck!

Back to top Profile Email
London's Mom
Joined Feb 11, 2009
Posts: 8

Other Topics
Posted:Feb 15, 2009 12:58:17 AM

Hi Mandi...I may have missed it somewhere (I apologize if that is the case) but my question was/is - what is the definitive, scientific test that undoubtedly diagnosed you with dyslexia??????????????? You have not answered this question.
I know the obvious dyslexia symptoms including all that you have listed but I am wantin' to know the facts of your dx that you have claimed. That was my question to you. You did not address that in your post so I'm wondering why not??

I believe your lack of scientific proof of add/adhd is a horrendous thorn in your side but I want to know why dyslexia is not as I believe it is the same clinical dx ...and I see this as a double standard here...please explain if I am wrong...

I understand that you have had a very difficult life and that you are looking for answers to your multiple issues...again I'm sorry for you... but please understand that you and my daughter could not be further apart with situations. I apologize for being transparent but at the same time, in my opinion your life experience is limited to just that...it can apply to some cases but does not apply here at all to my dd....and I know from experience with her that regardless of her challenges she will be an abstract thinker rather than concrete---not that concrete thinking is bad unless it becomes complicated and promotes dysfunction and inhibits functioning for reasonable happiness.

Again, I'm sorry for your situation and truly hope you can find some answers to your problems and questions...

Best wishes~
Jlynn

"Over every mountain there is a path although it may not be seen from the valley" Unknown author

Back to top Profile Email
njmom
Joined Feb 16, 2009
Posts: 1

Other Topics
Posted:Feb 18, 2009 7:27:29 PM

Hello, London's Mom. The great thing is that you are catching this early. I wouldn't focus too much on the Lymes. It might be that or not, or go away or not. The main issue even if it is Lymes is how is her ability to receive and process information being obstructed. Ask the person who did the achievement test to do a TAPS for auditory processing. At six, I assume she is having trouble with phonics, and b versus d isn't expected to develop yet. If the TAPS is ok, then consider a specialized eye Dr for visual processing. This can be more subtle than the Bender or Beery are able to show.

Right now, you can't go wrong with multisensory learning, until you get a definitive diagnosis, if ever. The Wilson Reading System is the leader in the field I think, both for effective quick results, and for multisensory reading education.

A little more information would help. I'm sure your doctors did these tests, but you might not have focused on these specific details. How does pseudonym decoding (WIAT-II or achievement test) compare to other reading scores? How does visual memory (Bender-Gestalt sub-test) compare to auditory memory (WISC-4 digits forward sub-test and digits backward sub-test)?

You gave us Verbal, Memory, and Perceptual. The fourth one is Processing Speed. I bet she's very high. At 6, thinking fast and accurately (instead of just accurately) really pushes up the IQ score. Whatever they give her works like caffeine, which most people (not all) feel improves their performance. I was told by a pediatric neurologist that if processing speed is average, there is no ADD. (But she still gives out prescriptions to improve performance.)

Back to top Profile Email