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Parenting a Child with LD or ADHD

Having trouble getting school to test for LD


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Joined: Oct 05, 2008
Posts: 17
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Posted Oct 05, 2008 at 4:56:04 PM
Subject: Having trouble getting school to test for LD

My 10-year old son has been struggling in school in most subjects, but mostly in reading, spelling, and writing since he started kindergarten. He is now in the fourth grade and has been evaluated as reading on a low 2nd grade level. I have been trying for the past two years to have him at least evaluated/tested in his public school system, but haven't had much success. We made the decision to have him repeat 1st grade in hopes that it would help him learn the basic elementary skills, but that didn't seem to work either. His psychologist has diagnosed him with ADHD (without the hyperactivity), OCD, and possible LD. He has been medically treated for the ADHD in the past but we didn't have much success with Strattera, Adderall, or Ritalin and the side effects were terrible. He is now taking medications for OCD. My problem lies with the schools reluctance to have him tested for LD, even though I have read much literature about it and he fits the category of Dyslexia and/or Dysgraphia. The school's suggestions always come back to modification in the classroom, which has been tried for several years and other than lessening his homework, it doesn't address the possible LD problem. The school began last year placing him in a tier reading group, but it takes so many weeks to complete and in the meantime he is falling further and further behind in other areas, especially writing, multiplication and spelling. I realize that the cost for special education in the public school system is an issue, but my question is, shouldn't a child with this type of learning disorder be given the same educational advantage as a child with a disorder such as Downs Syndrome, Autism, etc.? Has anyone experienced this problem with their child's school?

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scifinut
Joined Jul 11, 2005
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Posted:Oct 05, 2008 6:20:09 PM

Yes, we had this problem when my dd was in 3rd grade. She had bipolar, ADD and anxiety so the school was reluctant to test her, wanting to attribute all her issues to her psychiatric problems. I got an advocate, requested testing in writing, was denied. I then requested an Independent Educational Evaluation at public expense. Because I had a lot of documentation and they had failed to test her as requested, she got a very complete evaluation by multiple professionals.

If the school itself is not responding to your son's needs, go up the "chain of command" and write your next letter to the district special ed department.

scifinut mom to: ms 16, bp/adhd/anxiety/complex ld mr. 20, add/dyslexic I hear and I forget I see and I remember I do and I understand. -Anonymous

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Garrett's mom
Joined Oct 05, 2008
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Posted:Oct 05, 2008 7:17:00 PM

Thanks for the info. I have been reading about being my child's advocate and realize that I might have to go "over the school system's head". I hope everything is going well with your daughter.

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Mandi
Joined May 05, 2008
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Posted:Oct 05, 2008 9:11:19 PM

Sorry you are having trouble DRHD, may have something rather intelligent to offer for advice as does Scifinut. But i am gonna go a bit off subject because i am curious about some things related to ADHD. Things that to me in this post seem to me to make no sense. I am no expert though which is why i am going to make some statements and raise some rather statement 'issue/questions,' so to speak hoping to get back some info that can unconfuse me about the alledged (I say alledged as there is no organic evidence in existence for ADHD.) issues stated in this post. You see, i am alledgedly the same as your son. ADHD without hyper activity. So this hits close to home in a sense....

So here goes, I was under the impression that experts believe (with no organic evidence for the existance atleast of ADHD, not sure about OCD.) that ADHD is supposedly an issue with the frontal lobe and allegedly the exact *opposite* of OCD. If ADHD is alledgedly an atrophied frontal lobe in this case wouldn't OCD be a mildly too large frontal lobe, resulting in alledged behaviors claimed to be related to this disorder? Or am i wrong? I don't know much of anything beyond that i have read it is the polar opposite of ADHD about OCD so i am really uncertain and trying to understand. *If* this *is* the case, (polar opposites) how can a child with an over sized frontal lobe be diagnosed with an atrophied frontal lobe at the same time? This would seem to defy basic logic (and physics, so my husband, with a PHD in theoretical physics with an emphasis on quantum mechanics from Helsinki university tells me)... If someone could please explain for me how this is possible i would apreciate it. I am an archaeologist. I have made a pet of evolutionary theory. So i am familiar to a degree with the brain. However, i am not a brain surgeon. If someone could please explain?

Second issue i have is this, How can ADHD without the behaviors associated with ADHD be diagnosed period, as there is no way to test organically for this alledged disorder and the process of diagnosis is solely based on alledged behaviors exhibited that indicate ADHD. If one doesn't exhibit the behaviors such as hyper activity.... How then can this even be diagnosed??? "Sorry you don't show any symptoms of Cancer so we are going to cut your breasts off because we think you have breast cancer." Can you imagine if Dr.s said that to women? To me, this is what it sounds like when someone who's sole criteria for making a diagnosis is based on a totally subjective analysis of behaviors but in cases where the behaviors are lacking such as the hyper activity then how in hell can someone wind up diagnosed as disordered with a disorder for which they lack the symptoms of? And why in hell are there so many of us labled as ADHD?

And if my frontal lobe is infact atrophied why does it sometimes seem like i am the only one with basic common sense to even have these questions? Why is it no one else is questioning when all this doesn't even, to me atleast, seem to add up, 4+4 does NOT equal 7. and we are medicating our children with medicine that affects the brain's dopamine system exactly as cocaine does, only more enhanced, on top of all the vile side effects... You would think people would be demanding, screaming, for more information, for organic evidence, especially when it seems a kid can be (that is if the information i have is correct, which is why i am double checking) diagnosed with disorders that are directly in conflict with eachother. It would seem to me if you have ADHD and OCD at once then wouldn't your frontal lobe have to be normal??? To be both atrophied and enlarged (if they are truly polar opposites) at the same time??? Someone explain please because my brain hurts.

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Garrett's mom
Joined Oct 05, 2008
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Posted:Oct 05, 2008 11:13:12 PM

I'm fairly new to all of this medical psychiatric evaluation stuff, but based on my son's history (and in comparison to his three siblings..2 older & 1 younger who do not present with the problems he is having) I can only say for certain that he definitely has an entirely different way of thinking and learning than his siblings and the majority of children in his present and previous school classes. He has been exposed to the same early learning environment in the home, the same diet, immunizations, illnesses, etc. that my other 3 children have, yet his ability to focus and maintain information is radically different. He has struggled (and continues to struggle) through the past six years of school, and even now his 1st-grade sister is by-passing him in spelling and reading. I do not attribute most of his learning problems to ADD or ADHD, but as I said in my first post, I believe he has a learning disability. I DO believe, however, that the inability to focus properly has contributed to his slow learning process because he missed so much in his first two years of schooling. As to his OCD, this is a fairly new diagnosis, and may be contributed to PANDAS (Pediatric Autoimmune Neurophychiatric Disorder Associated with Strep, a subtype of OCD)due to a strep infection he acquired many months prior to the diagnosis and which has been improving following a round of antibiotics. I used to feel like you did regarding medicating for ADHD and we tried many different methods and treatments before even considering the stimulants. In fact, the whole stimulant controversy is one reason we chose to try Strattera. That didn't work any better than the stimulant medications in improving his focusing problem, so that, and the fact that the side effects, is why we chose to stop the meds.
One last thing: even though Garrett doesn't bring home perfect grades or make the honor roll like his brother and sisters, I and his father, know for certain that he is as intelligent (maybe more so) as they are and he has demonstrated that in his ability to problem-solve, invent,and create things with electronics. My husband also is considered ADHD, but his is more in the procrastination/"brain hurting when concentrating" category. (That has not stopped him from earning his Bachelors, Masters, and now working on his PhD.) I don't pretend to be an expert in the field of child psychiatrics....I only know what I and my son and family are experiencing with one frustrated little boy. I wish you well in your quest for answers.

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Mandi
Joined May 05, 2008
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Posted:Oct 06, 2008 12:37:38 AM

Ahh Sooooo nice to find a rational parent that is not peeing all over themself in terror and is instead using their rational mind. Highly unusual and you have earned a cookie.

Yes i was reading about OCD and i came across that. It seems this theory isn't proven conclusively but there does appear to be some semblance of semi evidence that does suggest it.

I am not sure weather ADHD as the experts generally perceive it exists. I am however quite sure something of some nature exactly what nature i can't say, is going on. I have not done any tests of my own on the various possibilities.

I am not entirely anti medicine. I am really definately of the opinion it is over used and even abused in and by our society especially the way we commonly use it on children. However, i do feel every case is different too. It seems to me personally that there are a tiny amount of cases that do seem to really need it for any semblance of a normal life. But generally i feel it does more harm than good and too little is known of the long term effects, however, i also believe in an ideal world we would not medicate anyone until their brains had reached full maturity so that we would not risk harming the development. I think too that we should strive alot harder as a society to create that perfect world than we do.

Yes attention can be hard to maintain. No it doesn't make us stupid. That is part of why i want some hard scientifically credible answers. Because i do understand. And i am so sick of reading articles that describe me as having the average intelligence of a border collie. It is offensive. And i am literate. And after 2 years of orton guillingham with my lab border collie cross he still provides no conclusive evidence of literacy therefore i conclude that i learned and he didn't which would seem sufficient proof that i am more intelligent than he is.

People with ADHD DO seem to have a different world view and a different way of thinking about things. This is true i don't deny it. But personally, i have to say on it's own it isn't a disability it is only a disability within the structure of our society and generally only a very mild one that can be a bit problematic whatever exactly it is.

There are a zillion methods to deal with ADHD without medication. I wish more people would spend more time exhausting those methods first because for alot of us, they work medication not included. And for a few... Medication doesn't exactly work either but it does improve quality of life and provide maybe a little relief. As i said my personal belief is that developing brains should not ever be medicated unless the child is a danger to himself of a very real kind or others. Though i do also recognize that every case is different and that it is not upto me to judge and that the world isn't perfect. But as an adult, i finally found a doctor who wasn't a moron. It took 24 years of looking to find someone with some semblance of intelligence he looked at all the drugs they ahve tested on me over the years and he actually broke down and wept. He told me he would go to court any day of the week and testify against all of them in suits for malpractice if i wanted him to. Because the drugs they had been testing on me were soooo wrong and they couldn't have NOT known that and passed shrink school. I just said the past is the past can you help me? Now i am happily medicated. It might be something you have not tried. It is designed to be very gentle on the system. Seriously, i have never known anyone more sensitive to the effects of drugs than i am. I was for a time on 1 quarter of a 5 miligram tablet of paxil once a day and it kept me flying so high round the clock literally bouncing off the walls that they then put me on a mood stabilizer a downer. I love this drug i am on now. Vivanse rocks. I hate drugs as a general rule i truly truly do. But this one.... WOW... Something that is atleast marginally helpful WITHOUT massive side effects for the most part.... Its incredible. I actually kissed my shrink. and i don't mean on the cheek... I was just soooo happy for the first time ever in my entire life someone gave me something that helped that didn't do weird things to me and that was practically unnoticeable in my system that had like no side effects for me.... and gentle on my system... You can't imagine what that was like. Someone literally gave me my life back after years of horrible depression because this drug as a result of treating the ADD fixes the seratonin level!!! Just thought i would tell you about it. Ya never know what might help someone else. But again it is a different thing for a fully developed brain to be using drugs like this as opposed to a still developing brain.... But you seem to have your head screwed on very straight. So i am sure you will be one of the few parents who truly does make good decisions though all parents try as hard as they can to do that, i think when it comes to ADHD, too many are too ruled by fear and terror etc... So, i know your son will grow up to be happy and healthy. Good luck!

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annette10dance
Joined May 13, 2008
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Posted:Oct 06, 2008 8:54:20 AM

Usually they do. There is an IEP plan specifically for ADHD. Kids can get Occupational Therapy. The OT gives wiggle pads or weighted lap pads to reduce fidgeting in the seat.

The school needs to give him a detailed evaluation. The psycho-educational evaluation, expressive and receptive language evaluation and reading evaluation. Some of the testing done on my son was Kaufmann Battery of tests (KABC-II), Jerry John's Early Literacy Assessment and Jerry John's Reading Inventory.

We also have my son in vision therapy. A good book to read is "When a child struggles; the myths of 20/20 vision" by Dr. David Cook.

Tell the Child Study Team at school that your son has above average IQ. Yet, he is not performing up to his ability and level of his IQ. That means he has LD.

I also have to ask how you missed that your 10 year old son was reading at a second grade level. Didn't you ever listen to him read? Even if you went privately for a tutor during some of those years, it would have helped. This shouldn't be new information for you unless you expected the medication for ADHD to work and he would catch up, which sometimes happens.

I hope you can get these evaluations done. Follow up with a neurodevelopmental pediatrician or a pediatric neurologist. Let us know how things go.

Annette

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Garrett's mom
Joined Oct 05, 2008
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Posted:Oct 06, 2008 9:35:05 AM

I have researched and read so much on the subject of ADHD, OCD, and LD in the past several years in the hope that something will help Garrett. I will read the book you suggested as well. We have not been blind to the fact that Garrett has major difficulties in reading. He has been read to since he was a baby, and he has been made to read to us since kindergarten. Reading and spelling were my best subjects in school and I have helped him as has his father (who has two degrees and is working on his PhD and who has also been employed as a after-school tutor for children who are not excelling in their studies), but there just seems to be a block there. He is in his second year of the public school's tier reading program where he is removed from the classroom for intervention reading. They said last year that his reading was on a 3rd grade level, but this year he has been evaluated on a early 2nd grade level. He has not been ignored in this area. In fact, his brother and sister (who, fortunately, do not require additional help) are probably the ones who have been pushed aside in our efforts to help Garrett. I think the fact that the school system has all but ignored a mother's knowledge of her son's disabilities, or at least has chosen not to act soon enough are the major reasons he is falling further and further behind. I have finally convinced the school to at least consider testing for LD....they wanted to finish the reading tier system first, but as I pointed out, each "tier" takes 9 weeks to complete and he doesn't seem to be making as much progress in this program as I would like to see. If indeed he does have a learning disability, such as dyslexia, he needs to be worked with as such. His ADHD is not as big of an issue to me now as is the possible LD. I believe with the proper attention given to the LD, he could learn to read and spell much better. If I knew the ways in which to teach him this, I would consider pulling him from the public school system and teaching that method myself.

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Mandi
Joined May 05, 2008
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Posted:Oct 06, 2008 2:41:01 PM

Well i had trouble with spelling... Anfd i couldn't read my own first name till i was almost 10. I don't know all the details or symptoms in detail but i thought i would ask if you have considered dyslexia? It is very common for dyslexics to also be highly intelligent too. I know i am dyslexic.... But again i don't have all the information nor am i an expert nor am i offering a diagnosis just a suggestion if you haven't yet considered it maybe this could be the problem? and maybe not... Just throwing it out there.... If it is that, then no worries. I am dyslexic i read and write english adequately, i am fluent in 6 languages and i read and write music in both our modern western written language for it, as well as that of the ancient greeks. With the right help, dyslexia can be over come. And then some. As i am also multi instrumental. (They said i would never even learn to read and write in english in 1984.....) I would like to ask them in atleast 3 of my additional languages what they think of me now in writing. Then i would very much enjoy giving them in the universal language of sign language, the one word or rather expression that is recognized everywhere, the bird.

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Garrett's mom
Joined Oct 05, 2008
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Posted:Oct 06, 2008 4:23:17 PM

It is very encouraging to hear from someone who has experienced the same problems and has overcome! I can tell from your correspondence that you are very well spoken and intelligent as well. Your many accomplishments just prove this! This bodes well for Garrett. I do think he may be dyslexic or even dysgraphic, having read much on both subjects, and those are two areas in which I desire him to be tested. Many people choose to make judgments based solely on academic performance in school or test scores. At one time in our early struggles I probably did the same with Garrett in comparing him with his straight-A's siblings. But as I said before, I now see just advanced he is in the visual sense and his extreme thought processes. He supersedes many in these areas; he just cannot express it well in words either orally or in writing. I have had several people (including two teachers) tell me that he is probably on a much higher level in his thinking than his peers. Luckily, this year in school he has a teacher who herself was classified as ADHD and she understands his struggles and sees the bright boy behind the poor grades. And the best part of all, is that she doesn't punish or belittle him because of his lack of ability. So many teachers in the past would deprive him of his recess time because of uncompleted worksheets (which only resulted in further frustration for him and us and didn't accomplish the hoped-for completion of these worksheets during the recess time). He requires much one-on-one help, especially with the reading of the instructions and sentences, and the inability to stay focused, that most of his school work is sent home for us to oversee anyway. I only wish all teachers would recognize that so many children with learning disabilities are not dumb....so much of it is in the way they are taught. The standard worksheet, lecturing-style learning in today's schools is boring (to say the least) for those children considered of average or of above-average ability, much less for the ADHD child who learns much better with stimulating activities that they can experience and experiment with. I hope that in working closely with his school and him, we will be able to see him succeed and even excel in life. You obviously have and still do. Thanks for the encouraging words!

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scifinut
Joined Jul 11, 2005
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Posted:Oct 07, 2008 9:02:37 AM

Just another ray of hope - my daughter didn't read above a 2nd/3rd grade level until after she was in 6th grade. She jumped to grade level reading by the end of her 9th grade year and is now able to strongly read at or above grade level. Reading and writing were a terrible struggle for her because of two issues both related to visual processing. She has 20/20 when looking at a distance but double vision at book reading distance and Irlen Syndrome. We had to fix both issues for her to start to be able to read. Then we added computer based reading (text to speech programs with visual tracking).

She is also a very strong kinetic learner with a high IQ that runs into problems with the typical work asked for in school.

Keep pushing for things to help your son. Research different ways to help him learn and work with him at home (and over the summer). There a lots of ways people learn and its all about finding what fits your child.

scifinut mom to: ms 16, bp/adhd/anxiety/complex ld mr. 20, add/dyslexic I hear and I forget I see and I remember I do and I understand. -Anonymous

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annette10dance
Joined May 13, 2008
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Posted:Oct 07, 2008 9:09:20 AM

I really enjoy reading Dr. Mel Levine's books "A mind at a time" and "The myth of Laziness". I also like "The out of sync child" by Carol Kranowitz which explains sensory intergration dysfunction.

Dr. Mel Levine explains that we are all wired differently. The school is designed to expect every child to succeed in every subject every year. Every person has a different neurological profile. Some kids are good in all subjects. Some kids just need to be specialized in certain areas and not well rounded.

I would be curious to know if your son has sensory issues and not ADHD. The medication works works well and you see results very quickly. There might be other causes for inattention such as anxiety or sensory issues. We should discuss this more.

Annette

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Garrett's mom
Joined Oct 05, 2008
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Posted:Oct 07, 2008 9:46:24 AM

What a great success story! Congratulations on your persistance in being an advocate for your child. I take heart from stories like yours. I will continue to fight the good battle for the well-being of my son (and others like him). Thanks for the encouragement. In the meantime, I have succeeded in obtaining another school meeting this Tuesday to discuss LD testing....hopefully good will come from it.

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DRHD
Joined Apr 29, 2008
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Posted:Oct 07, 2008 3:57:50 PM

Garretts Mom,

I have reviewed your question and he commentary provided to you by others. In this regard, please note:

1) ADHD alone is not a disability within the context of IDEA. An IEP is designed to address assessed needstht would be inclusive of manifestations of ADHD. The disability category that ADHD falls within is Other Health Impairment.

2) As you proceed to the meeting Tuesday and the school division may refuse to proceed to a full evaluation, please let me know. They are required to provide you with Prior Written Notice of this refusal. This is an important piece of the process. Please also let me understand if this is a formal Child Study Committee or just what is the forum and type of meeting.

3) I have much concern for your child with regard to the PANDAS issue. This may require you to seek counseling asthis is a difficult school issue where school success is related to compliance and other school skills.

DRHD

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Garrett's mom
Joined Oct 05, 2008
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Posted:Oct 08, 2008 8:36:15 AM

This particular meeting (at least I as I understand it) is to move forward in testing him for dyslexia, dysgraphia, etc. due to his inability of written expression. We have had several IEP meetings in the past 2-1/2 years, but nothing ever really comes from it except for further modifications, which lessen his work load, but aren't addressing or correcting the problem. Their idea was to let him speak into a recorder instead of having to write lengthy paragraphs. Instead I have been writing out his sentences from his dictation. I'm not sure how this is helping him learn to write, but it gets the homework finished in one hour versus three (or not at all). I finally told them in the last meeting (as well as discussions via telephone) that we need to take this a step further. His teacher provided me with a form to request testing for LDs, and that is where we are. I will be extremely disappointed and upset if this is just another attempt to "soothe" us or suggest modifications again. I will keep in mind what you said in relation to the requirements.

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DRHD
Joined Apr 29, 2008
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Posted:Oct 10, 2008 9:42:52 AM

I think that the written expression issue is the core of the problem. Let me know how all this turns out for your son

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