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I think the symptoms disappeared within the first 3 months. I was started at the 4.5mg dose. I also do a lot of acupuncture which I think helped with the additional symptoms. My husband is an acupuncturist, so I was getting treatments about 3x a week or whenever I was not feeling as well. I usually go to bed around 11:30pm and wake up at 7am. Most afternoons, I "rest" for about 15 minutes. I have a very active 3 year old, so my need to rest could be my daughter having me do one to many dance parties. :) I've just added a little more food to my diet to counter the weight loss. I'm down to 106 from 115 at 5'5". I'm not too bothered as long as the weight loss doesn't interfere with my workouts. Hope that answers your questions. Happy New Year.

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Thank you

I am still running my first month and symptoms become milder every day, so I hope they dissappear. Since I go to bed about midnight and fall asleep about 1 am, I have found out that resting for an hour after lunch is of great help. I strongly recommend supplements, hoemeopathy and the Best Bet Diet. I have been on this diet for 10 months now and feel full of energy + colitis and constipation have disappeared. If you are or wish to go on it, watch your weight. Although I eat more now, I have lost 6, coming down approximately to your actual weight.

Healthy and Happy New Year.

katerina

[low dose naltrexone] Re: new to the group

I think the symptoms disappeared within the first 3 months. I was started at the 4.5mg dose. I also do a lot of acupuncture which I think helped with the additional symptoms. My husband is an acupuncturist, so I was getting treatments about 3x a week or whenever I was not feeling as well. I usually go to bed around 11:30pm and wake up at 7am. Most afternoons, I "rest" for about 15 minutes. I have a very active 3 year old, so my need to rest could be my daughter having me do one to many dance parties. :)

I've just added a little more food to my diet to counter the weight loss. I'm down to 106 from 115 at 5'5". I'm not too bothered as long as the weight loss doesn't interfere with my workouts.

Hope that answers your questions.

Happy New Year.

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HAPPY NEW YEAR maybe 2008 will be a better Year???????F????? ???????? <triadaf@...> wrote: Thank you I am still running my first month and symptoms become milder every day, so I hope they dissappear. Since I go to bed about midnight and fall asleep about 1 am, I have found out that resting for an hour after lunch is of great help. I strongly recommend supplements, hoemeopathy and the Best Bet Diet. I have been on this diet for 10 months now and feel full of energy + colitis and constipation have disappeared. If you are or wish to go on it, watch your weight. Although I eat more now, I

have lost 6, coming down approximately to your actual weight. Healthy and Happy New Year. katerina

[low dose naltrexone] Re: new to the group I think the symptoms disappeared within the first 3 months. I was started at the 4.5mg dose. I also do a lot of acupuncture which I think helped with the additional symptoms. My husband is an acupuncturist, so I was getting treatments about 3x a week or whenever I was not feeling as well. I usually go to bed around 11:30pm and wake up at 7am. Most afternoons, I "rest" for about 15 minutes. I have a very active 3 year old, so my need to rest could be my daughter having me do one to many dance parties. :) I've just added a little more food to my diet to counter the weight loss. I'm down to 106 from 115 at 5'5". I'm not too bothered as long as the weight loss doesn't interfere with my workouts. Hope that answers your questions. Happy

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Aletha,

thanks a lot; I am SO excited by reading all the stories!

You do a really great job,

with all the best from Ingrid

[low dose naltrexone] new to the group

hello,my name is camille. i have been diagnosed with ms for 4 years.then hypothyroid, etc. i have failed all injectables and i dont want to do tysabri (too scared) anyway i would like to hear from people using ldn and see how they are doing with it. i have read the ldn sites but i would like testimonials the good and the bad.thanks,Camille

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Just thinking it over myself. I hope you are doing OK with the MS. I have got (Chronic Progressive). Stan

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  • 3 weeks later...

Hi and Welcome !

I believe he does need to see a specialist about this because you're right , it is controlling his life and his quality of life is lessened.

Maybe the place to start is with your Ped and ask for a referral to a Ped Pysch.

There is therapy and meds for this, don't despair, he can be helped :-)

hugs

, wife, mom and grandma to my beloved aspies.

Wags! Wags! Wags!

Lowry

"There is no psychiatrist in the world like a puppy licking your face."

Author Ben

From: fegozoypaz@...Date: Sun, 20 Jan 2008 10:33:59 -0800Subject: ( ) new to the group

My son, 8 is HF Asperger's. He is also ADHD and has Dysgraphia. He is extremely bright and strong in both Math and Reading. He is blowing academics out of the water at school and in fact is bored because his Reading level is so high and he finishes all the work b4 the other kids. He doesn't take any meds and needs no academic support. He receives SP, OT and PT. He is ackward socially and that is the one area where it is obvious that he is Asperger's. Other than that he functions quite well in school and other types of situations.

The reason I decided to join is because he has started with OCD like behaviors or are they Asperger behaviors? He thinks his butt is dirty all the time and cleans it constantly. He goes through one roll ot TP per day. We are at our wit's end not knowing what to do. So, we have started monitoring every time he goes to the bathroom and give him a small amount of TP and a wet washcloth. This stops him from rubbing himself raw but his discomfort continues. He tells me "but Mom, why do I still feel dirty?". I tell him that it isn't real. Thankfully, we can entertain him so that he sort of forgets about it for a while. He went through a stage where he yanked his hair out but that resolved within a couple of weeks and he stopped on his own.

What should we do? Do we need to take him to the Peds? Psychologist? Psychiatrist? Does he need therapy for this or medication? Are there ways to help him with this? I am afraid that it is starting to interfere with his quality of life.

I would appreciate any feedback on this.

Thanks

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Hi. I'd say that if any behavior is starting to interfere with your life in a negative way,,,,then it won't hurt to talk about it with someone. My son uses wipes after he goes to the bathroom. We have them in both bathrooms and have to take them when we travel. I guess it's considered OCD, but now that he has the wipes,,,,,he FEELS cleaner. He also, used to go through a LOT of tp. One of my other kids wipes and it's still nasty,,,,(ick) so I wish we could find a happy medium. Ha ha. Good luck. Robin Marussich <fegozoypaz@...> wrote: My son, 8 is HF Asperger's. He is also ADHD and has Dysgraphia. He is extremely bright and strong in both Math and Reading. He is blowing academics out of the water at school and in fact is bored because his Reading level is so high and he finishes all the work b4 the other kids. He doesn't take any meds and needs no academic support. He receives SP, OT and PT. He is ackward socially and that is the one area where it is obvious that he is Asperger's. Other than that he functions quite well in school and other types of situations. The reason I decided to join is because he has started with OCD like behaviors or are they Asperger behaviors? He thinks his butt is dirty all the time and cleans it constantly. He goes through one roll ot TP per day. We are at our wit's end not knowing what to do. So, we have started monitoring every time he

goes to the bathroom and give him a small amount of TP and a wet washcloth. This stops him from rubbing himself raw but his discomfort continues. He tells me "but Mom, why do I still feel dirty?". I tell him that it isn't real. Thankfully, we can entertain him so that he sort of forgets about it for a while. He went through a stage where he yanked his hair out but that resolved within a couple of weeks and he stopped on his own. What should we do? Do we need to take him to the Peds? Psychologist? Psychiatrist? Does he need therapy for this or medication? Are there ways to help him with this? I am afraid that it is starting to interfere with his quality of life. I would appreciate any feedback on this. Thanks Looking for last minute shopping deals? Find them fast with Search.

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Hi , there are some with OCD that go through this. I think

you're doing a good job with it, limiting the TP, wet cloth, telling

him it's not real, etc. They never feel " clean. " Some people have

tried the disposable wipes (like your wet cloth), can help them to

feel cleaner.

Talking to a therapist about it may help him and with ideas to use.

Some sufferers, girls pretty much, will change underwear constantly

as they feel like it may be wet, never feels dry, etc.

I found an excerpt from my OCD group to share after a parent wrote in

about your situation (never feel clean after bowel movements), no

names in it so okay to share:

" That is how it was at our house too until we sought help and learned

to deal with it. We began by limiting the amount of wipes she could

use and then supporting her while she dealt with the anxiety that

caused. The first night was awful! But in just a couple of weeks she

went from wiping for 45 minutes and still not feeling clean to being

able to wipe a normal amount of times and with MUCH less anxiety. I

felt like a mean parent to only allow a certain amount of wipes, but

it worked wonders and she can now use the bathroom alone most of the

time and with little anxiety. "

Hope this helps,

>

> My son, 8 is HF Asperger's. He is also ADHD and has Dysgraphia. He

is extremely bright and strong in both Math and Reading. He is

blowing academics out of the water at school and in fact is bored

because his Reading level is so high and he finishes all the work b4

the other kids. He doesn't take any meds and needs no academic

support. He receives SP, OT and PT. He is ackward socially and that

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Call the state licensing board and ask how you find out the back grounds of the

Psychologist and/or Psychiatrics, because are wanting to find one who has

CLINICAL EXPERIENCE with diagnosing and treating kids with ADHD, Autism

Spectrum Disorder and the such.

Perhaps they can only tell you who works with kids such as these. In that case

phone

their offices and ask if they have clinical experience and WHERE they trained.

If that

person does not have hands on clinical experience ask if they know who does. He

is too old now to waste time with a doctor who is only playing hit and miss

through

reading articles.

Also, he was born not understanding social cues, he has just gotten to know

them

within the family is all. ; )

Dee

>

>

> Hi everyone, I am new to this group and am having one of those days

> where I feel like I am the only person on this planet who " gets " my

> son.

> Recently had a PPT where everyone involved had a different opinion.

> Don't they understand???????? Obvoisly they don't. To amke matters

> worse I am employed in the school district where my son attends

> school. And alot of people have trouble seperating the staff

> member " me " from the mom " me " . Does any one know of any good

> therapist in Conn. who specialize in Asperger's? I am willing to

> drive any distance I need to. My son will enter Junior High next

> year and is already having difficulty with social cues, which I know

> will only get worse as he gets older.

>

> Any input would be greatly appreciated

>

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  • 3 months later...
Guest guest

HI Elaine,My thought is that LDN may be interacting with the lunesta. My dad has drug interaction probems with anti-depressants and anti-anxiety medications with LDN. It is also possible that you might want to try a smaller dose. Some people complain of joint pain and jaw pain if their dose is too high for them.Best Regards,Destinyepra72 <epra72@...> wrote: Hi folks, I am new to this group and have completed 7 nights on 3.5mgs of LDN for mainly FMS and MPS. I have had mycoplasma infection 12 yrs

ago that caused RA. I did the antibiotic minocycline treatment for this and thought it to be in remission. since being on the LDN, on the 5 & 6 days, I have had aching and pain everywhere, including joints. Is there someone that posts, that has these medical conditions and has experienced the same symptoms after starting LDN. I finally got a decent nights sleep last night, but I think I may have to adjust my Lunesta somewhat so I am not so tired the next day. any help would be appreciated! Elaine

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Dear Elaine,

Welcome to the group.

I just finished my 28th day on LDN for Fibromyalgia

and other auto-immune disorders that also began with a

mycoplasmal infection about 30 years ago. Have you

googled " Stealth Pathogens " ?

My first week was very good. The most remarkable

improvement was the lifting of fibro-fog and an energy

boost. I still have a good bit of muscle-joint-tendon

pain, but not quite as bad as before LDN, and figure

it took a long time for me to get this sick and I can

expect it to take a while to get my seriously damaged

immune system back into some sort of working order!

I increased my dose quickly to 4.5, as that seems to

be the optimal dose for most everything except MS.

A major feature of my fibro is, of course, a sleep

disorder, and I must deal with that, but prescription

sleep aids are just too hang-over inducing for me, so

I use GABA, melatonin and 5HTP at night, as well as

" Natural Calm " , a powdered magnesium, and I sleep

pretty well most of the time.

Some of your increased pain is probably due to a

Herxheimer healing crisis. You can hope. Please don't

give up or get discouraged. LDN is not a miracle for

us, but I do believe it can be very helpful in the

long term.

I too am eager to hear from people using LDN for FMS,

and, though there seem to be few of us here, have

found this group to be very helpful.

I hope you find great benefit, and look forward to

future posts from you. Please feel free to email me

personally as well.

Konnie

new to the group

Posted by: " epra72 " epra72@... epra72

Fri May 2, 2008 6:48 am (PDT)

Hi folks, I am new to this group and have completed 7

nights on 3.5mgs

of LDN for mainly FMS and MPS. I have had mycoplasma

infection 12 yrs

ago... since being on the LDN, on the

5 & 6 days, I have had aching and pain everywhere,

including joints.

.... I finally got a

decent nights sleep last night, but I think I may have

to adjust my

Lunesta somewhat so I am not so tired the next day.

any help would be

appreciated! Elaine

Peace

________________________________________________________________________________\

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4.5mgs of LDN is the optimal adult dosage. Many people with MS take

this amount, me included.

Art

--

>

> Dear Elaine,

>

> Welcome to the group.

> I just finished my 28th day on LDN for Fibromyalgia

> and other auto-immune disorders that also began with a

> mycoplasmal infection about 30 years ago. Have you

> googled " Stealth Pathogens " ?

> My first week was very good. The most remarkable

> improvement was the lifting of fibro-fog and an energy

> boost. I still have a good bit of muscle-joint-tendon

> pain, but not quite as bad as before LDN, and figure

> it took a long time for me to get this sick and I can

> expect it to take a while to get my seriously damaged

> immune system back into some sort of working order!

> I increased my dose quickly to 4.5, as that seems to

> be the optimal dose for most everything except MS.

> A major feature of my fibro is, of course, a sleep

> disorder, and I must deal with that, but prescription

> sleep aids are just too hang-over inducing for me, so

> I use GABA, melatonin and 5HTP at night, as well as

> " Natural Calm " , a powdered magnesium, and I sleep

> pretty well most of the time.

> Some of your increased pain is probably due to a

> Herxheimer healing crisis. You can hope. Please don't

> give up or get discouraged. LDN is not a miracle for

> us, but I do believe it can be very helpful in the

> long term.

>

> I too am eager to hear from people using LDN for FMS,

> and, though there seem to be few of us here, have

> found this group to be very helpful.

> I hope you find great benefit, and look forward to

> future posts from you. Please feel free to email me

> personally as well.

>

> Konnie

>

>

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Guest guest

Thanks Art, for clarifying that.

I probably should have said that I have seen advice to

MS patients who have increased spasticity on 4.5 mg to

try reducing it to 3mg.

I guess I just figured that information is well-known

by those using it for MS, so widespread, and clearly

stated in the intoductory material, on the

low dose naltrexone website, etc., that it didn't need

to be repeated. I hope I have not muddied the issue

further here!

But yes, most sources, including Dr. Bahari, do say

the optimum dose is 4.5 mg., and I do hope that folks

go to those sources and do thorough research on their

own before setting out on the LDN path.

Konnie

Peace

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

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  • 2 months later...
Guest guest

Kellie,

Thank you for sharing your story. When I first read you had identical twins with DS, I was amazed. I have never heard that before. I thought, how lucky is she? I would love two of my !

Then I read on and realized you lost Hagen. The loss of a child is hard for someone to comprehend unless they have been there, but, I can imagine your pain and hope your heart has found some healing.

How is Brogan? Did he have any of the other things our kids sometimes get?

My had it all; A/V canal, Duodenal Atresia and AML. He is doing great today at 3 years old!

Thanks again,

www.caringbridge.org/visit/lindadolezan

In a message dated 7/26/2008 7:18:50 P.M. Eastern Daylight Time, twinshmbh@... writes:

Hi, My name is Kellie. I am mom to identical twins with DS. They were born in 2003. Hagen and Brogan! Hagen developed AML in March of 05. He went through 3 rounds of Chemo.. relapsed and had a successful bone marrow transplant. He was 1 year 6 months post Trasp. when he developed pneumonia, which is uncommon. He recovered, gave us a big scare, then redeveloped the pneumonia, recovered and then got a bacterial infection and within a short time passed away. He faught very hard for so long!! He was a few months shy of his 4th birthday. Brogan is healthy, we test him every six months. I do not share this story to scare any of you... I wish I knew of this group while we were going through the things you are now going through. I do share this story so that you know about us. I am currently helping another family through some of their questions they have who also have a DS boy who just relapsed as well. Not all of our precious kids go through the same things and all respond differently, but there are lots of things that we do go through that are the same and I will keep all of you in my prayers!! Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today.

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Guest guest

Dear Kellie,

I wanted to thank you as well for writing and sharing your story. I am so sorry

to hear of

your loss.

Our son Zach, who's 13 mos., is undergoing his first round of chemo for AML.

Part of the

study Zach is part of for his treatment plan will look at the genetic side of DS

and AML, so

it is interesting to hear that you had identical twins and only one developed

AML.

Zach's Caring Bridge site is under his full name: zacharyleonwallace.

Again, thanks so much for writing.

>

> Kellie,

>

> Thank you for sharing your story. When I first read you had identical twins

> with DS, I was amazed. I have never heard that before. I thought, how lucky is

> she? I would love two of my !

>

> Then I read on and realized you lost Hagen. The loss of a child is hard for

> someone to comprehend unless they have been there, but, I can imagine your

> pain and hope your heart has found some healing.

>

> How is Brogan? Did he have any of the other things our kids sometimes get?

>

> My had it all; A/V canal, Duodenal Atresia and AML. He is doing great

> today at 3 years old!

>

> Thanks again,

>

>

> _www.caringbridge.org/visit/lindadolezan_

> (http://www.caringbridge.org/visit/lindadolezan)

>

>

>

> In a message dated 7/26/2008 7:18:50 P.M. Eastern Daylight Time,

> twinshmbh@... writes:

>

>

>

>

> Hi, My name is Kellie. I am mom to identical twins with DS. They were

> born in 2003. Hagen and Brogan! Hagen developed AML in March of 05.

> He went through 3 rounds of Chemo.. relapsed and had a successful bone

> marrow transplant. He was 1 year 6 months post Trasp. when he

> developed pneumonia, which is uncommon. He recovered, gave us a big

> scare, then redeveloped the pneumonia, recovered and then got a

> bacterial infection and within a short time passed away. He faught

> very hard for so long!! He was a few months shy of his 4th birthday.

> Brogan is healthy, we test him every six months. I do not share this

> story to scare any of you... I wish I knew of this group while we were

> going through the things you are now going through. I do share this

> story so that you know about us. I am currently helping another family

> through some of their questions they have who also have a DS boy who

> just relapsed as well. Not all of our precious kids go through the

> same things and all respond differently, but there are lots of things

> that we do go through that are the same and I will keep all of you in

> my prayers!!

>

>

>

>

>

>

>

> **************Get fantasy football with free live scoring. Sign up for

> FanHouse Fantasy Football today.

> (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

>

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Guest guest

Hi Kellie, and welcome! My daughter just finished treatment for AML in May. She is 2 1/2. I am so sorry for your loss. That is absolutely devestating. Will you email me? enseno153@...

Carey

http://www.cbranam.blogspot.com/

http://www.marykay.com/cbranam516/default.aspx

[ ] New to the Group

Hi, My name is Kellie. I am mom to identical twins with DS. They were

born in 2003. Hagen and Brogan! Hagen developed AML in March of 05.

He went through 3 rounds of Chemo.. relapsed and had a successful bone

marrow transplant. He was 1 year 6 months post Trasp. when he

developed pneumonia, which is uncommon. He recovered, gave us a big

scare, then redeveloped the pneumonia, recovered and then got a

bacterial infection and within a short time passed away. He faught

very hard for so long!! He was a few months shy of his 4th birthday.

Brogan is healthy, we test him every six months. I do not share this

story to scare any of you... I wish I knew of this group while we were

going through the things you are now going through. I do share this

story so that you know about us. I am currently helping another family

through some of their questions they have who also have a DS boy who

just relapsed as well. Not all of our precious kids go through the

same things and all respond differently, but there are lots of things

that we do go through that are the same and I will keep all of you in

my prayers!!

The Famous, the Infamous, the Lame - in your browser. Get the TMZ Toolbar Now!

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  • 1 month later...

Thank you, Robin. Nice to be here.

We just have one computer, but when my son is at the jr. college, I

was able to spend the afternoon online :)

This was a wonderful and quick look at Lynette Louise.

She was someone I found online for the first time today.

http://www.brainbody.net/Welcome.html

Enjoy,

M.

>

> From: tjay1302000 <t-jay130@...>

> Subject: ( ) New to the group

>

> Date: Thursday, August 28, 2008, 4:10 PM

>

>

>

>

>

>

> Hi,

> I am new to the group.

> My autistic son is 16. The toddler and early elementary school years

> were the most challenging. We homeschooled, and he is doing well now.

> There is HOPE.

> I wanted to share this with you to add more free tools to your family

> " tools "

> I am new to this group and very excited to share a wonderful free

> resources online. http://autismtreatm entcenter. org/media: video,32, 0

>

> Great for eyecontact, behavior, etc.

> I wish I had this type of support as I scrambled and cried my way

> through the years.

>

> Enjoy,

> M.

>

> Raised in Alberta, Canada, Louise made her way to the States in 1996.

> She has raised eight children, six of whom are adopted and five who

> have been diagnosed with varying degrees of autism…..

>

> Lynette Louise

> Part 1…http://www.youtube. com/watch? v=5NofvYC9pxc & feature=related

> Part 2….http://www.youtube. com/watch? v=v_LrViU_ O5E & feature= related

> Part 3…http://www.youtube. com/watch? v=WKYhA1sYXf4 & feature=related

> Part 4…http://www.youtube. com/watch? v=ChaxliC8yNw & NR=1

>

> Lynette's Quick History of Autism…

> http://www.youtube. com/watch? v=Mv6GpIHUHPw & feature=related

>

> Link to free video tutorials on how to work with an autistic child.

> These are amazingly informative web seminars for language, eye

> contact, etc.

>

> http://autismtreatm entcenter. org/media: video,32, 0

>

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  • 1 month later...

I would contact the Nebraska Division of Developmental Disabilities:

Nebraska DHHS: Overview of the Developmental Disabilities Division

Pam :)Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out!

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  • 10 months later...

Welcome to our group!! We do sanity saving here, you're in luck! lol.

<GG>

 Roxanna

" The only thing necessary for the triumph of evil is for good men to do

nothing. " E. Burke

( ) New to the group

My 5 year old was just diagnosed with Aspergers along with being ADHD I

look forward to being a part of this group and hope I can learn some

things to help me keep my sanity!!

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  • 4 months later...

Homeschool or get ready to fight. Having done both I know which

I prefer.

Namaste

Dawn in Tucson

Life's

Work Coach, Astrologer, Certified Tarot Reader & Professional Muse

Listen

to Dawn on Grey Matter at www.929themountain.com - Sundays 9pm-11pm - Listen

to previous shows http://www.929themountain.com/cc-common/podcast.html

Check

out www.evolvingu.com

Tools, Resources, Information and Inspiration to Evolve into the life you truly

want!

Discover

your Soul Purpose Career - Astrologerdawn - www.astrologerdawn.com

(520)

419-5419 or (877) GO-2-DAWN (Toll Free) FAX: 520-423-3063

There

is a difference between interest and commitment. When you are interested in

doing something, you do it only when circumstances permit. When you are

committed to something, you accept no excuses, only results. - Unknown

From:

[mailto: ] On

Behalf Of doreen walton

Sent: Thursday, January 28, 2010 11:42 AM

Subject: ( ) New to the group

Hi. My name is Doreen. I am new to this group. My daughter

is currently undergoing diagnosis for either A.S. or NLD. She loves to read

but has a very hard time in math. Right now we are having issues with her

teacher at school. She refuses to understand that my daughter has a disorder

even after the school social worker and principal told her and attempted to

explain it to her. Her behavior is hurting my daughter emotionally. I need

some advice from someone who's been in a similar situation. I'm at my wits

end. Thank you.

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I was in a similar situation when my daughter was in kg, so I know how agonizing it is to send them off to school everyday; knowing what your child is going through. The first thing I did was speak with the Principal, share my concerns and asked him what possible solutions we could entertain. We had several meetings with the teacher, tried some alternative teaching methods in the classroom, all to no avail. Ultimately I insisted they transfer her to another classroom during the winter break... so she returned to a different classroom/teacher following the holidays. Believe me, it was not easy, and I had to push hard to make it happen. The change was miraculous... she and her new teacher became fast friends, she thrived and she couldn't wait to go to school each day! Hope this gives you courage.

Kate

From: doreen walton <doreenandjason@...>Subject: ( ) New to the group Date: Thursday, January 28, 2010, 12:42 PM

Hi. My name is Doreen. I am new to this group. My daughter is currently undergoing diagnosis for either A.S. or NLD. She loves to read but has a very hard time in math. Right now we are having issues with her teacher at school. She refuses to understand that my daughter has a disorder even after the school social worker and principal told her and attempted to explain it to her. Her behavior is hurting my daughter emotionally. I need some advice from someone who's been in a similar situation. I'm at my wits end. Thank you.

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Hello, my name is and my seven year old son is having similiar troubles. The teacher is very strict and although she is an okay teacher she is a terrible fit for my son. The tensions have grown to be so bad that I am actually fearful to speak to either the principal or the teacher about my concerns. My fears are that he will be verbally abused more or worse. In the beginning when I did do that and I tried to politely explain that his behavior and learning style was different because of his neurology (translation he can't help it!). The result was that she stopped telling me about his behavior and now I only find out what happens at school from him. It isn't good. He has been pushed, pulled, shoved into corners, denied recess, and is often asked to sit outside the group

setting. (He has no aide and really no accomodations.) On one of my volunteer days a little girl told me that the teacher told her that she couldn't play with my son because he was bad. YIKES. When I speak to my son about this he gets sad about it but says he pretty much deserves it because he is so bad. His behavior is really not that bad, fidgeting, not using classroom time well and some impulsive silly stuff. He starts off everyday saying I really hope today is a better day, I really hope I am not the bad one today. At the end of the day he confesses every minor infraction. He plainly states "My teacher hates me." I try and tell him different but it is hard because I think he is right - she hates him and it is very clear.

So you are probably wondering why I don't yank him out of that school. Well he has a best friend, a real best friend who picks him to play with first, who calls him on the phone, who told him that he was first on his birthday list. This is a first for him and I am so torn because he has started to chew on his shirts and pinch at his eyebrows and eyes from the anxiety at school. But then there are the moments when he describes playing with this friend and he is really on cloud nine and I don't know what to do.

Currently I volunteer as often as I can, have homeschool days and just tell him over and over and over again that he is smart, loving and has so many wonderful qualities. I also sometimes go through an event and we re-enact the mis-step and then I pretend to be his teacher and tell him what I would have done. I also tell him what he might do or think the next time. Sometimes he loves this and sometimes he hates it (depends on the size of the mistake.)

Good luck to you, my experience is that a teacher either gets it or does not and no matter how much you try to explain it you can't really get someone who doesn't want to know to understand. To be completely honest it probably took me a full year to change the way I parented him and I am with him all the time and love him more than anything.

Take care,

From: doreen walton <doreenandjason@...> Sent: Thu, January 28, 2010 11:42:06 AMSubject: ( ) New to the group

Hi. My name is Doreen. I am new to this group. My daughter is currently undergoing diagnosis for either A.S. or NLD. She loves to read but has a very hard time in math. Right now we are having issues with her teacher at school. She refuses to understand that my daughter has a disorder even after the school social worker and principal told her and attempted to explain it to her. Her behavior is hurting my daughter emotionally. I need some advice from someone who's been in a similar situation. I'm at my wits end. Thank you.

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PLEASE, PLEASE, PLEASE don't take this from your child’s

teachers or principal, or from anyone else for that matter. You wouldn’t allow physical harm come to your

children if you saw it about to happen.

Don’t allow emotional harm to come to them either. Talk to the

principal first, and if he/she doesn't make changes, go to the director of

pupil services or whoever the principal answers to. Keep escalating it until you are heard and

the problems are addressed with a well designed and implemented plan of action

on the part of the school. Then monitor the plan and progress daily and

revisit the plan if and whenever changes are needed, until the child responds

favorably. You are your child's only

true advocate!!!

My situation: My son started off 1st grade getting into trouble after a

week. We were called in and treated as if we were bad parents. His

teacher would call me almost every day almost in tears. One day she had

me pick him up early from school saying he was just too disruptive. I

called the principal and school psychologist about this and said I want another

teacher for my son. The principal made the change.

The new teacher got frustrated too, but was mentally

stronger and better able to handle him. Still, one Friday he was so

disruptive that she pulled him out of the classroom and he was resisting her by

pulling back. During the struggle he hit his head against the cinder

block wall and came home with the back of his head swollen badly. He told

me the teacher banged his head against the wall and left him in the

hallway. He never told her that he was hurt because he was afraid.

The next week, I met with his teacher and let him confront

her (his head was still swollen). His teacher felt the bump and then told

him she didn't think she banged his head, but if she did, she was sorry, and to

never be afraid to tell her when he is hurt. The following school day,

without my knowledge however, the principal grabbed him while walking to his

class and with the teacher and school psychologist, they interrogated him

privately in a closed room until he changed his story and said he sat down and

hit his head on his own.

When I later found out about this and asked him why he

changed his story, he said because they kept asking him “over and over againâ€

and they “wouldn't believe†him. I marched up to the school and told the

principal she was not going to put in her report that my son lied, because they

forced him to change his story. DON'T TAKE ANY CRAP FROM THESE PEOPLE AND

DOCUMENT EVERYTHING. After every situation, I now type up exactly what

happened for my records. I also carry a

portable recorder to dictate mental notes for later transcription when I am

driving or not near a notepad and pen.

This can also be used to record in your child’s own words what happened

during situations he or she was involved in at school, to further protect their

rights.

My son had a best friend in his first class, but apparently a teacher (possibly

the same one) told the friend's mother that my son was a problem, and the

mother won't let her son even talk to my son anymore. At a school event,

the boy’s father pulled him in close to “protect†him when my son approached to

say hi. Later the boy told my son that

he is “not allowed to play with†him anymore.

When I asked the school psychologist about this, he said any teacher can

tell any parent anything about another child and that there are no laws to

prevent it. He talked about chance

meetings at the grocery store as an example. I asked about HIPPA

violations and he said they go by FERPA. Later in researching this we

determined that the statement made by the teacher is in direct violation of

these guidelines.

The teachers and staff are often willing to lie or

manipulate the truth when necessary to protect themselves and others in their

faculty. The problem is I don't have proof of who said it and what was

said, but I do have the person that told me, who does know. If I were to sue, that person could be

subpoenaed to testify against that teacher.

When it was recommended that our son should be evaluated for

a possible IEP, we found a FREE government funded service called Parents In

Network (PIN), which provided for a designated advocate to attend our IEP

meetings and to further protect my child’s rights. We sensed a major change in attitudes of the

school staff at future IEP meetings with her there. She spoke up in disagreement with some

comments in the meetings. She was very

helpful in preparing for meetings and also able to suggest resources outside

the school such as support groups.

During the first IEP meeting, at one point they suggested he

should go to another school with smaller class sizes which they claimed was

“better equipped to handle himâ€. His teacher jumped out of her seat with

such excitement saying "that would be best for him" that you would

have thought she just won the lottery. My husband and I said in no

uncertain terms that we would not allow them to move him into a strange

environment in the middle of the school year.

The principal had suggested twice that I put him on

drugs. I told her I don't even have a diagnosis yet, and that drugs would

be my absolute last resort, if at all. They obviously are tired of

dealing with him, but it's a public school and they have to make accommodations.

The counselor told me that the school has to exhaust all available resources to

support my child and provide for his education without regard for cost;

otherwise they would lose their funding.

He even said that if the school or district he is in now couldn’t make

the necessary accommodations within their district, that their district would

have to pay whatever costs were required to have him cared for at another

educational facility.

Since the school district doesn’t want to spend their

funding for programs outside their district, they are forced to comply. My son’s school is actually now hiring

additional staff, retraining existing staff, and implementing an entirely new

program headed by the special education teacher, motivated by us at his IEP, so

they can provide for our son’s needs along with a select few others she wanted

to include. The special education

teacher said she had been asking for a program like this for the past year and

was excited that it was now taking shape.

The counselor had told us that 1 out of 5 students in the district has

been labeled in one way or another. It

is obvious that change is needed to support these children.

Perhaps there is an attorney in the group or otherwise connected who may wish

to speak to parents like myself and others I've read about here to determine

what can be done to protect our children's rights. The lack of concern

for our children's rights seems to have reached epidemic proportions already,

and unless we fight to protect their rights now, the authorities will continue

to strip them away and it will be a more difficult fight to regain them

later. Our children are innocent victims of a society that cannot accept

them for who they are and instead simply treat them as outcasts, and we as

parents are looked upon and scrutinized as though we are to blame for the

problems our children are suffering from. We need to stand up together to

protect them. There is strength in numbers. Let's form a union like

Mothers Against Drunk Driving (MADD) or something similar.

and Doreen, start with the principal, then go higher up, to the school

board if you have to. Whoever the special education teachers’ supervisor

is can protect your child because that is their job, so it may be best to start

there. Get your kids out of the out-of-control teacher's room before it

permanently scars their self esteem. You can't protect your children when

you're not there, you don't know what is being said or done to them during the

school day, so you have to be able to trust the staff explicitly to act in your

child's best interests 100% of the time, and if the ones caring for them now

can't be trusted, you’re your children are in danger and something must be

done..

Don't let them suffer this abuse. First, type up a

letter saying there is obviously a problem with the teacher being unable to

deal with your child, and the solution must start with the teacher and the

school. If the teacher cannot be educated in the proper method(s) of care

for children with AS or other learning or social skills deficiencies, then your

child must be moved to one who can. Don't wait; go to the principal with

it on Monday.

You pay school taxes; therefore your child has the same rights as any other

child in that classroom to an environment which promotes a good education.

Anything less than equal opportunity is discrimination. The law provides for

growing protection from discrimination for a monolithic variety of reasons,

whether physical, mental or emotional disabilities, religious choice, gender or

race, medical or otherwise, but there are some areas of concern still severely

lacking and this is one of them. We need to fight for change..Let me know how things progress.Gen

From: Murrel <mommio55@...>Subject: Re: ( ) New to the group Date: Friday, January 29, 2010, 1:24 PM

Hello, my name is and my seven year old son is having similiar troubles. The teacher is very strict and although she is an okay teacher she is a terrible fit for my son. The tensions have grown to be so bad that I am actually fearful to speak to either the principal or the teacher about my concerns. My fears are that he will be verbally abused more or worse. In the beginning when I did do that and I tried to politely explain that his behavior and learning style was different because of his neurology (translation he can't help it!). The result was that she stopped telling me about his behavior and now I only find out what happens at school from him. It isn't good. He has been pushed, pulled, shoved into corners, denied recess, and is often asked to sit outside the group

setting. (He has no aide and really no accomodations. ) On one of my volunteer days a little girl told me that the teacher told her that she couldn't play with my son because he was bad. YIKES. When I speak to my son about this he gets sad about it but says he pretty much deserves it because he is so bad. His behavior is really not that bad, fidgeting, not using classroom time well and some impulsive silly stuff. He starts off everyday saying I really hope today is a better day, I really hope I am not the bad one today. At the end of the day he confesses every minor infraction. He plainly states "My teacher hates me." I try and tell him different but it is hard because I think he is right - she hates him and it is very clear.

So you are probably wondering why I don't yank him out of that school. Well he has a best friend, a real best friend who picks him to play with first, who calls him on the phone, who told him that he was first on his birthday list. This is a first for him and I am so torn because he has started to chew on his shirts and pinch at his eyebrows and eyes from the anxiety at school. But then there are the moments when he describes playing with this friend and he is really on cloud nine and I don't know what to do.

Currently I volunteer as often as I can, have homeschool days and just tell him over and over and over again that he is smart, loving and has so many wonderful qualities. I also sometimes go through an event and we re-enact the mis-step and then I pretend to be his teacher and tell him what I would have done. I also tell him what he might do or think the next time. Sometimes he loves this and sometimes he hates it (depends on the size of the mistake.)

Good luck to you, my experience is that a teacher either gets it or does not and no matter how much you try to explain it you can't really get someone who doesn't want to know to understand. To be completely honest it probably took me a full year to change the way I parented him and I am with him all the time and love him more than anything.

Take care,

From: doreen walton <doreenandjason> Sent: Thu, January 28, 2010 11:42:06 AMSubject: ( ) New to the group

Hi. My name is Doreen. I am new to this group. My daughter is currently undergoing diagnosis for either A.S. or NLD. She loves to read but has a very hard time in math. Right now we are having issues with her teacher at school. She refuses to understand that my daughter has a disorder even after the school social worker and principal told her and attempted to explain it to her. Her behavior is hurting my daughter emotionally. I need some advice from someone who's been in a similar situation. I'm at my wits end. Thank you.

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PLEASE, PLEASE, PLEASE don't take this from your child’s teachers or principal, or from anyone else for that matter. You wouldn’t allow physical harm come to your children if you saw it about to happen. Don’t allow emotional harm to come to them either. Talk to the principal first, and if he/she doesn't make changes, go to the director of pupil services or whoever the principal answers to. Keep escalating it until you are heard and the problems are addressed with a well designed and implemented plan of action on the part of the school. Then monitor the plan and progress daily and revisit the plan if and whenever changes are needed, until the child responds favorably. You are your child's only true advocate!!!

I have spoken to the principal, the autism specialist, our local support group that helps to advocate for people with disabilities and each and every time the teacher acts nice, polite and complimentary. Everytime someone of authority is in the room she is a different person. She has been given countless actual modification ideas and she has implemented some of them (visual schedules) but not directly teach them. So they end up buried in his desk or just being a complete distraction. She has been physical with him pushing, pulling and generally just being mean. I told her at our FIFTH IPP review that she needs to develop a trust with my son. He needs to feel comfortable with her. She actually SNORTED and asked, "How am I supposed to do that?" I pointed out that the principal informed me that my son's funding was going to teacher empowerment and that maybe that might be a place to

start.

So in my situation each and every time I advocate my son's situation gets a little worse. I hate to say this but she sort of punishes me by punishing him. When he was having difficulty with writing in his agenda (okay he wasn't doing it at all - and was just staring off into space) she told me that she had given up on him and was no longer going to bother with it. So since he could memorize the sentence I would make it write it out once he was at home - it usually took between three and five minutes. Now I called another school in the city to see if I could talk to their staff behavioral specialist (our school doesn't have one) and she started to use a timer and had the student teacher help him out. So now she is doing what is require but she doesn't give him a treat for completing the agenda like she does with the other children BECAUSE he requires HELP and he isn't doing it like the other kids. (Insert heavy

sigh.) So of course he gets upset hyperfocused on his anger and is more unsuccessful in getting his stuff packed up to go home.

My situation: My son started off 1st grade getting into trouble after a week. We were called in and treated as if we were bad parents. His teacher would call me almost every day almost in tears. One day she had me pick him up early from school saying he was just too disruptive. I called the principal and school psychologist about this and said I want another teacher for my son. The principal made the change.

Our principal has specifically told me two things. One there is not enough funding for my son to get any aide support and that there are more significant needs in the classroom than my son's. Keep in mind that he has a severe medical code - in Alberta where we live - that is the pretty much the maximum meaning his needs are significant. The principal also gave me the advice to get myself therapy so that I would know how to parent my son better when he comes home and begins all this negative self talk.

The new teacher got frustrated too, but was mentally stronger and better able to handle him. Still, one Friday he was so disruptive that she pulled him out of the classroom and he was resisting her by pulling back. During the struggle he hit his head against the cinder block wall and came home with the back of his head swollen badly. He told me the teacher banged his head against the wall and left him in the hallway. He never told her that he was hurt because he was afraid.

So far my son isn't really too disruptive. Only once was he threatened to be sent home and that is when some kid told him that the scissors were not sharp enough to cut hair and he cut some off to prove the scissors were sharp. It was only four strands and the other child wasn't hurt but the teacher FLIPPED OUT. She yelled at him and dragged his desk clear across the room and told him not to move unless he asked her first. Which he did. He was so afraid that he just sat there. Mostly he gets in trouble for not working. He usually just rolls his pencil back and forth or pretends it is a rocket or he gets caught up in a book. She will actually bang on his desk to get his attention. This is the reason I think he started to chew his clothes and pick at his eyebrows and eyelids. I think he is anxious and afraid.

The next week, I met with his teacher and let him confront her (his head was still swollen). His teacher felt the bump and then told him she didn't think she banged his head, but if she did, she was sorry, and to never be afraid to tell her when he is hurt. The following school day, without my knowledge however, the principal grabbed him while walking to his class and with the teacher and school psychologist, they interrogated him privately in a closed room until he changed his story and said he sat down and hit his head on his own.

Our teacher would NEVER apologise and the Alberta's Teacher's Association (union) is so strong that unless she is witness by someone other than me to be physically or sexually abusive to him she is untouchable.

When I later found out about this and asked him why he changed his story, he said because they kept asking him “over and over again†and they “wouldn't believe†him. I marched up to the school and told the principal she was not going to put in her report that my son lied, because they forced him to change his story. DON'T TAKE ANY CRAP FROM THESE PEOPLE AND DOCUMENT EVERYTHING. After every situation, I now type up exactly what happened for my records. I also carry a portable recorder to dictate mental notes for later transcription when I am driving or not near a notepad and pen. This can also be used to record in your child’s own words what happened during situations he or she was involved in at school, to further protect their rights.

I also take notes but the principal and the teacher are both part of the ATA and I don't think that Canada has any parent advocate when it comes to children with disabilities. But please if I am wrong about this please correct me. I have thought of recording some of what I witness when I volunteer but not sure if that would be legal???My son had a best friend in his first class, but apparently a teacher (possibly the same one) told the friend's mother that my son was a problem, and the mother won't let her son even talk to my son anymore. At a school event, the boy’s father pulled him in close to “protect†him when my son approached to say hi. Later the boy told my son that he is “not allowed to play with†him anymore. When I asked the school psychologist about this, he said any teacher can tell any parent anything about another child and that

there are no laws to prevent it. He talked about chance meetings at the grocery store as an example. I asked about HIPPA violations and he said they go by FERPA. Later in researching this we determined that the statement made by the teacher is in direct violation of these guidelines.

The teachers and staff are often willing to lie or manipulate the truth when necessary to protect themselves and others in their faculty. The problem is I don't have proof of who said it and what was said, but I do have the person that told me, who does know. If I were to sue, that person could be subpoenaed to testify against that teacher.

When it was recommended that our son should be evaluated for a possible IEP, we found a FREE government funded service called Parents In Network (PIN), which provided for a designated advocate to attend our IEP meetings and to further protect my child’s rights. We sensed a major change in attitudes of the school staff at future IEP meetings with her there. She spoke up in disagreement with some comments in the meetings. She was very helpful in preparing for meetings and also able to suggest resources outside the school such as support groups.

During the first IEP meeting, at one point they suggested he should go to another school with smaller class sizes which they claimed was “better equipped to handle himâ€. His teacher jumped out of her seat with such excitement saying "that would be best for him" that you would have thought she just won the lottery. My husband and I said in no uncertain terms that we would not allow them to move him into a strange environment in the middle of the school year.

The principal had suggested twice that I put him on drugs. I told her I don't even have a diagnosis yet, and that drugs would be my absolute last resort, if at all. They obviously are tired of dealing with him, but it's a public school and they have to make accommodations. The counselor told me that the school has to exhaust all available resources to support my child and provide for his education without regard for cost; otherwise they would lose their funding. He even said that if the school or district he is in now couldn’t make the necessary accommodations within their district, that their district would have to pay whatever costs were required to have him cared for at another educational facility.

Since the school district doesn’t want to spend their funding for programs outside their district, they are forced to comply. My son’s school is actually now hiring additional staff, retraining existing staff, and implementing an entirely new program headed by the special education teacher, motivated by us at his IEP, so they can provide for our son’s needs along with a select few others she wanted to include. The special education teacher said she had been asking for a program like this for the past year and was excited that it was now taking shape. The counselor had told us that 1 out of 5 students in the district has been labeled in one way or another. It is obvious that change is needed to support these children.Perhaps there is an attorney in the group or otherwise connected who may wish to speak to parents like myself and others I've read

about here to determine what can be done to protect our children's rights. The lack of concern for our children's rights seems to have reached epidemic proportions already, and unless we fight to protect their rights now, the authorities will continue to strip them away and it will be a more difficult fight to regain them later. Our children are innocent victims of a society that cannot accept them for who they are and instead simply treat them as outcasts, and we as parents are looked upon and scrutinized as though we are to blame for the problems our children are suffering from. We need to stand up together to protect them. There is strength in numbers. Let's form a union like Mothers Against Drunk Driving (MADD) or something similar.

I agree I think I something has to be done when the system fails these children. Most likely I will look at homeschooling because I see the unlimited potential in my son and all they see is what he isn't good at.

and Doreen, start with the principal, then go higher up, to the school board if you have to. Whoever the special education teachers’ supervisor is can protect your child because that is their job, so it may be best to start there. Get your kids out of the out-of-control teacher's room before it permanently scars their self esteem. You can't protect your children when you're not there, you don't know what is being said or done to them during the school day, so you have to be able to trust the staff explicitly to act in your child's best interests 100% of the time, and if the ones caring for them now can't be trusted, you’re your children are in danger and something must be done..

Don't let them suffer this abuse. First, type up a letter saying there is obviously a problem with the teacher being unable to deal with your child, and the solution must start with the teacher and the school. If the teacher cannot be educated in the proper method(s) of care for children with AS or other learning or social skills deficiencies, then your child must be moved to one who can. Don't wait; go to the principal with it on Monday.You pay school taxes; therefore your child has the same rights as any other child in that classroom to an environment which promotes a good education. Anything less than equal opportunity is discrimination. The law provides for growing protection from discrimination for a monolithic variety of reasons, whether physical, mental or emotional disabilities, religious choice, gender or race, medical or otherwise, but there are some areas of concern still severely

lacking and this is one of them. We need to fight for change..

I have a meeting schedule for Thursday I will let you know how it goes. In the meantime does anyone know how to be confrontation without getting emotional? Any advice??? ...

Let me know how things progress.

Gen

From: Murrel <mommio55 (DOT) com>Subject: Re: ( ) New to the group Date: Friday, January 29, 2010, 1:24 PM

Hello, my name is and my seven year old son is having similiar troubles. The teacher is very strict and although she is an okay teacher she is a terrible fit for my son. The tensions have grown to be so bad that I am actually fearful to speak to either the principal or the teacher about my concerns. My fears are that he will be verbally abused more or worse. In the beginning when I did do that and I tried to politely explain that his behavior and learning style was different because of his neurology (translation he can't help it!). The result was that she stopped telling me about his behavior and now I only find out what happens at school from him. It isn't good. He has been pushed, pulled, shoved into corners, denied recess, and is often asked to sit outside the group setting. (He has no aide and really no accomodations. ) On one of my volunteer days a little girl told me that the teacher told her that she couldn't play with my

son because he was bad. YIKES. When I speak to my son about this he gets sad about it but says he pretty much deserves it because he is so bad. His behavior is really not that bad, fidgeting, not using classroom time well and some impulsive silly stuff. He starts off everyday saying I really hope today is a better day, I really hope I am not the bad one today. At the end of the day he confesses every minor infraction. He plainly states "My teacher hates me." I try and tell him different but it is hard because I think he is right - she hates him and it is very clear.

So you are probably wondering why I don't yank him out of that school. Well he has a best friend, a real best friend who picks him to play with first, who calls him on the phone, who told him that he was first on his birthday list. This is a first for him and I am so torn because he has started to chew on his shirts and pinch at his eyebrows and eyes from the anxiety at school. But then there are the moments when he describes playing with this friend and he is really on cloud nine and I don't know what to do.

Currently I volunteer as often as I can, have homeschool days and just tell him over and over and over again that he is smart, loving and has so many wonderful qualities. I also sometimes go through an event and we re-enact the mis-step and then I pretend to be his teacher and tell him what I would have done. I also tell him what he might do or think the next time. Sometimes he loves this and sometimes he hates it (depends on the size of the mistake.)

Good luck to you, my experience is that a teacher either gets it or does not and no matter how much you try to explain it you can't really get someone who doesn't want to know to understand. To be completely honest it probably took me a full year to change the way I parented him and I am with him all the time and love him more than anything.

Take care,

From: doreen walton <doreenandjason> Sent: Thu, January 28, 2010 11:42:06 AMSubject: ( ) New to the group

Hi. My name is Doreen. I am new to this group. My daughter is currently undergoing diagnosis for either A.S. or NLD. She loves to read but has a very hard time in math. Right now we are having issues with her teacher at school. She refuses to understand that my daughter has a disorder even after the school social worker and principal told her and attempted to explain it to her. Her behavior is hurting my daughter emotionally. I need some advice from someone who's been in a similar situation. I'm at my wits end. Thank you.

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