Re: I give up.

[Guest guest]

, if it took 2 weeks for the teacher to move the other child once you

told her Elias was anxious because he was being kicked, then the teacher is

the problem. Could it be that the class is too large? Or is she just not a

very good teacher? She should be looking out for this kind of thing.

When this happened to , the other kid was moved NEXT DAY. Again, I say

that an aide would really be a help here.

/ 4makelas@...

Way, Way Up in Northern Ontario

----- Original Message -----

From: " L. " <order@...>

He was getting really anxious about going to school until he finally told me

that some kid was kicking him under the table all the time so that the

teacher wouldn't see. It took her 2 weeks to move the child to another

table.

[Guest guest]

> I say that an aide would really be a help here.

>

Hi ,

I agree. Failing that, can you just go hang out in the classroom as

much as possible? I know that's not convenient for you, but it would

certainly give you a very good understanding of what's going on. (I

have a vague recollection that your school district doesn't permit

this.) Does your district have any kind of inclusion specialist or

autism expert that you could try to get called in? It sounds like

your son's teacher needs more training in how to teach an AS child.

Or is there another teacher who is better qualified?

Is there any specific reason that the kids in his class are picking on

him? (Not that he deserves it in any case.)

Start taking Polaroids of the marks other kids are leaving on him and

dating them. Can he tell you if just one or two kids are doing it?

P.S. I am homeschooling my 1st grade HFA daughter. She wasn't a

behavior problem in the kindergarten classroom (where she had an

aide); she saved her massive tantrums until just after we got home.

At least your school district sees the problems even if they don't

know what to do about them. I don't think the public school was good

for her emotional health. (The only times she ever had these terrible

tantrums were the 3.5 months she was in a public kindergarten.)

[Guest guest]

I have the same sort of problems with Matt. Luckily he came home the other day

and announced that his " arch nemisis " (lol)had moved away. The child to whom he

was refering kept making fun of him because he has an aid. This was one issue

with an aid that Iwas afraid of. Mathew is just starting to realize that he is

different. He just wants to be one of the kids and can't be. He wants to go to

class alone but can't handle it and always has to leave. He feels funny having

someone in the room with him. It's really hard - he knows he's different and

wants to fit in but he can't. I think I liked it better when he wasn't aware of

it. We aren't sure how to handle it. A work in progress.

Re: ( ) I give up.

> I say that an aide would really be a help here.

>

Hi ,

I agree. Failing that, can you just go hang out in the classroom as

much as possible? I know that's not convenient for you, but it would

certainly give you a very good understanding of what's going on. (I

have a vague recollection that your school district doesn't permit

this.) Does your district have any kind of inclusion specialist or

autism expert that you could try to get called in? It sounds like

your son's teacher needs more training in how to teach an AS child.

Or is there another teacher who is better qualified?

Is there any specific reason that the kids in his class are picking on

him? (Not that he deserves it in any case.)

Start taking Polaroids of the marks other kids are leaving on him and

dating them. Can he tell you if just one or two kids are doing it?

P.S. I am homeschooling my 1st grade HFA daughter. She wasn't a

behavior problem in the kindergarten classroom (where she had an

aide); she saved her massive tantrums until just after we got home.

At least your school district sees the problems even if they don't

know what to do about them. I don't think the public school was good

for her emotional health. (The only times she ever had these terrible

tantrums were the 3.5 months she was in a public kindergarten.)

[Guest guest]

, I think it's good that you went back and reread my post. No problem

with you responding twice! We are all trying to help in our own way, and I

hope that something I've written will prove useful.

You sound extremely frustrated. I get what you mean about Elias not

understanding consequences. What a typical AS comeback. Reminds me of

when he's forgotten to do something. I say, " Did you do that? " and his

response is, " I'll do it now. " He doesn't get it that it was supposed to be

done already and he figures (at age 15) that if he does it right now it will

be OK.

So far as the incidents where Elias says another child hit him first:

had a really difficult time telling a story without adding things in.

Finally we resorted to really concrete questions like " Whose mouth did those

words come out of? " and " Whose hand touched that book? " and " Describe the

boy who called you that name. What does he look like, where does he sit,

what does he eat for lunch, how can you tell him apart from the other kids,

etc " . He did understand that it was important that he exactly answer the

questions, and since they were phrased in a way that he couldn't possibly

misinterpret (I hope) he was able to successfully give us the correct

information. While he enjoys embellishing a story, he is not likely to

totally make something up. I would believe Elias when he tells you that he

is being touched in some way and that it is provoking him. At his young age

it is difficult for him not to respond to being hit, especially as it will

affect him much more than an " ordinary " child in a sensory way.

You need to get more details from him if possible in order to relay this

information to the school. If it's the kid that sits to his right at circle

time, then you can say that to the teacher. BTW, we once set up all the

chairs in the house to represent the seats on a school bus in order to

identify which child gave something that the teacher later

confiscated ... You may have to have the household sit in a circle so that

Elias can point out where the perpetrator would be sitting if circle time is

a problem ... drawing pictures isn't anywhere near as useful. Or set up

chairs as desks.

As a matter of fact, we talked today because there was an incident of

violence in his school today (several of them actually, with the same

perpetrator) and a boy will be suspended or expelled and the other boy's

parents may call the police and if so the witnesses may be questioned by the

police. I was careful to explain to that it was important that he say

only what he actually saw happening, not what he thought might have

happened. It only happens if you see or hear it (experience it) yourself.

I don't know about the laws where you are, but there is a process here where

if you aren't happy with your child's placement, you can request a review,

and there is a time limit for this to take place. You must request in

writing to the principal. Here it's called the Identification, Placement and

Review Committee. They also have an ARD committee that is made up of the

psychologists and so on that meets once or twice a year to approve placement

changes. The wheels of bureaucracy do move slowly ...

/ 4makelas@...

Way, Way Up in Northern Ontario

----- Original Message -----

From: " L. " <order@...>

Sorry to respond twice, I went back and saw points I'd missed.

[Guest guest]

LInda wrote:

> >> , I don't want to disagree with you, but the main point

is that they

> can't have a child at school striking out physically and hurting

the other

> kids. There is zero tolerance here for that as there is in most

other

> educational systems.<<

>

, Elias is FIVE YEARS OLD!!! Honest to goodness, that 'zero

tolerance' stuff is like killing a flea with a sledgehammer

sometimes.

The basic problem here is that the teacher has not reached out in a

loving way to Elias. This teacher has it in for this student. I

have seen this behavior over and over with teachers of my Aspie

son.

said:

" > The point is that I suspect he's usually being provoked and hurt

by the other kids FIRST, because I have NEVER seen him lash out at

anyone without any provocation whatsoever, but they aren't doing

anything about it no matter how many letters I fax, and yes, I'm

calling them every day.

He was getting really anxious about going to school until he finally

told me that some kid was kicking him under the table all the time

so that the teacher wouldn't see.... "

Neuro-typical children who bully others know innately when to

provoke (only when the teacher's back is turned or she's out of

earshot). Somehow it's just so much fun for them to pick on the

vulnerable socially awkward child. The Aspie kid takes a lot of

verbal and physical abuse before he lashes back.

In 3rd grade, C. was mercilessly abused daily by a pack of girls.

They called names, poked, bumped, kicked and humiliated him in every

way. They stole his lunch and hid it (he didn't tell me any of

this). They took his backpack and filled it with dirt and sand.

(and I was yelling at him for it being so dirty). Then one day I

found a paper on which he had written a plan to " blow up " the

girls. If the teacher had found it, he would have been kicked out

of school, no questions asked. The whole sad scenario came out when

I questioned him. Here's what I did: I went and spied on the

playground at recess and during lunch. I showed up to volunteer in

art class. I wrote down every instance of bullying and aggression I

saw, and not only towards my son (took every bit of my strength not

to intervene immediately). I took my documentation to the principal

and told them that the school was fostering an abusive environment

and if they didn't fix it I would sue them for child endangerment.

It was only then that they took it seriously.

Sorry to jump in so late here -- and you may have already decided

what to do with Elias re: school -- but this is clearly a teacher

problem (the teacher sets the tone). You know well that

homeschooling sometimes increases the social isolation, not to

mention that as a single parent you never get a break. Maybe you

could tap into AS resources in your area, maybe you could discreetly

talk to other kindergarten teachers at Elias' school with the view

of switching him to a nicer, more loving environment. So many times

that's all it is -- my son flourishes in classrooms where the

teacher is just a nice person (she doesn't have to be a genius, she

just has to appreciate his and other kids' 'genius').

said:

" The teacher has outright told me and him that she doesn't

believe " half " the things he tells her (and the problem is that it's

compounded by the fact that sometimes he DOES make up stories, "

Honestly, this teacher sounds lousy. Everyone who has any exposure

to kids knows that some kids make up wild stories! It's not a bad

thing! It's creative! The teacher should say (when it's clearly a

fib) " Wow, that's an AMAZING story! You should write it down. "

, I am so with you. I have walked in your shoes. You don't

believe it now, but someday you will thumb your nose at all those

stupid people at school. Elias will be a great credit to you and

only you. Just keep focussing on his strengths. You are a great

mom to him.

Happy Holidays,

[Guest guest]

In a message dated 12/16/2003 11:27:53 AM Eastern Standard Time,

order@... writes:

- He now speaks at the level of a child several years older, so obviously

this is the most ridiculous thing in the world to give a 5yo with a 9yo's

vocabulary and no speech problems an hour of speech therapy per week.

is also very bright and his vocabulary score was perfect, in other words

he did the whole test perfectly. It only went to third grade. He receives ST

twice a week. He has low tone so he does have some physical speech problems

but he also has problems with pragmatic language. He is unable to describe

things, he has difficulty carrying on a conversation start to finish, etc. The

ST

is very helpful in those areas.

[Guest guest]

>>It is so hard sometimes getting the schools to do what is right. Maybe you

could hold an emergency IEP meeting and discuss getting a behavioral plan and

the class set up for him so he isn't haven't tantrums as much. <<

We had an emergency IEP meeting last week, but they didn't want to discuss a

behavioral plan until the school psychologist finished her battery of tests.

She had finished all but one, and that one was 3/8 done, and then we had to wait

until she wrote a report and everyone had read it.

This woman has taken *six weeks* to do the tests so far. Who knows how much

longer she'd take to do this much? They refused to do any behavioral management

or prescribe any changes in the classroom until it's done. And what's worse,

they prescribed more speech therapy for him because it was in his old IEP from

three years ago (the other public preschool here didn't keep a record of the one

they did for him last year!!) even though I pointed out that the IEP was done

before he was talking - he now speaks at the level of a child several years

older, so obviously this is the most ridiculous thing in the world to give a 5yo

with a 9yo's vocabulary and no speech problems an hour of speech therapy per

week.

So last Sunday Elias announced he decided he wanted to homeschool after all, but

we're giving him a break over the holidays and starting homeschooling

mid-January again so that he can de-stress from school.

Thanks for everyone's input and support. =)

[Guest guest]

,

Ahh, I can definitely see why it would be helpful in those situations, although

it honestly hadn't occurred to me, so I was basically speaking out of ignorance.

:/ But honestly my son CAN describe things (in minute detail) and CAN carry on

a pretty good conversation. I mean, he may zone out if it's a conversation

about something he's not interested in, but... trust me, the speech therapy

thing in my son's case would be a complete waste of time.

I didn't mean to imply that everyone going to a ST has something " wrong " with

the way they talk or anything like that though!!!

Re: ( ) I give up.

In a message dated 12/16/2003 11:27:53 AM Eastern Standard Time,

order@... writes:

- He now speaks at the level of a child several years older, so obviously

this is the most ridiculous thing in the world to give a 5yo with a 9yo's

vocabulary and no speech problems an hour of speech therapy per week.

is also very bright and his vocabulary score was perfect, in other words

he did the whole test perfectly. It only went to third grade. He receives ST

twice a week. He has low tone so he does have some physical speech problems

but he also has problems with pragmatic language. He is unable to describe

things, he has difficulty carrying on a conversation start to finish, etc. The

ST

is very helpful in those areas.

[Guest guest]

Mercuria <mercuria@...> wrote:

>

> I've been sick for 22 years now.

> But I think I'm on the wrong list. Whatever I have, it's not ME.

At least, that's what I keep hearing from you people.

>

> It can't be ME because I actually experienced stress before I got

sick. And since it's un-PC to say that this is in any way related to

stress, I clearly don't belong here.

>

> It can't be ME because I have excellent reason to suspect the

presence of a genetic component -- damn near irrefutable in my

case, in fact. And since it's un-PC to say this is in any way a

matter of " bad genes, " I clearly don't belong here.

>

> It can't be ME because I insist on using that name, instead of

accepting the martyrdom that comes with the ridiculous one cooked up

by the CDC. And since it's un-PC to foreswear a stupid name that

means nothing in favor of a clear diagnosis that does, I clearly

don't belong here.

>

> Apparently, it can't even be ME even when the guy who wrote the

best CFS/ME definition in the world examined me yesterday and told

me, no question, that what I have is DEFINITELY ME.

>

> So you can all go squabble among yourselves about the politically

> correct definition of whatever it is you have. The infighting so

> much more important than silly facts and science anyway. Or the

> opinion of any doctor, for that matter.

>

> There is not enough energy in me to allow this list to sap any

more of it. I have better things to do -- a degree to finish, a new

(and very hot) blogging gig, friends and family and a life. I wish

the same to any of you who are willing to stop the petty bickering

and go out and get it for yourselves.

> Goodbye.

>> Sara

Did anyone in this group ever say that the illness was NOT ME?

I thought it was rather the opposite, that ME is exactly as Ramsay

described, and that Canadian Guidelines ME/CFS (Original CFS) is

ALSO ME.

And as far as I know, while stress is not good in any illness,

there is no amount of stress, however severe, in recorded history

that consistently or even sporadically resulted in either ME or CFS.

Certainly not in a reproducible fashion.

I believe that we are just asking that people refrain from

implicating stress as causative, or as anything more than an

exacerbating factor, so that psychologizers and their therapies can

be dismissed from serious consideration and application.

Does anyone believe that if Wessely had been present during your

decline and prior to onset of clinical severity, and whisked you

into a clinic for pre-emptive counseling and antidepressant therapy-

that your illness would have been successfully circumvented?

If one has an ME diagnosis, one should certainly use it.

But if someone with a CFS diagnosis has the same illness, would it

be fair to tell them that they are suffering from nothing more than

fatigue, no matter what Dr Cheney, , the Canadian Guidelines

and a mountain of research and evidence says?

Certainly CFS is a degrading name, but the history of this illness

cannot be erased by adopting the stance that a serious and disabling

illness was really nothing more than: " CFS? Oh yes, I get tired too,

sometimes " .

Because that isn't how CFS happened.

And is why, if you fulfil the requirements of the Canadian Consensus

Criteria - your case of CFS can be called ME as a matter of

scientific fact, as verified by the authors of the Canadian

Guidelines, who refuse to accept that their presentation of CFS was

invalid and inaccurate.

-

[Guest guest]

Dear Sara,

I would think that STRESS is one of many precipItating factors, which would be

relevant to many physiological diseases..but I wonder why you STRESS it...

although certainly a factor in CANCER, HEART DISEASE, etc., one does not hear

such a FOCUS on it...

It has been utlizied as a way to DISMISS our diseases as PSYCHOLOGICAL, and

thus, to prevent exploration into all the physiological factors involved,

despite worldwide science that proves it is not psychological.

It is OK to take into account that it may be ONE FACTOR, and to find ways to

lower stress, however, I do not think that it is the prime cause.

This is hoping you will be able to lower YOUR STRESS.

Amelia

Mercuria <mercuria@...> wrote:

>

> I've been sick for 22 years now.

> But I think I'm on the wrong list. Whatever I have, it's not ME.

At least, that's what I keep hearing from you people.

>

> It can't be ME because I actually experienced stress before I got

sick. And since it's un-PC to say that this is in any way related to

stress, I clearly don't belong here.

>

> It can't be ME because I have excellent reason to suspect the

presence of a genetic component -- damn near irrefutable in my

case, in fact. And since it's un-PC to say this is in any way a

matter of " bad genes, " I clearly don't belong here.

>

> It can't be ME because I insist on using that name, instead of

accepting the martyrdom that comes with the ridiculous one cooked up

by the CDC. And since it's un-PC to foreswear a stupid name that

means nothing in favor of a clear diagnosis that does, I clearly

don't belong here.

>

> Apparently, it can't even be ME even when the guy who wrote the

best CFS/ME definition in the world examined me yesterday and told

me, no question, that what I have is DEFINITELY ME.

>

> So you can all go squabble among yourselves about the politically

> correct definition of whatever it is you have. The infighting so

> much more important than silly facts and science anyway. Or the

> opinion of any doctor, for that matter.

>

> There is not enough energy in me to allow this list to sap any

more of it. I have better things to do -- a degree to finish, a new

(and very hot) blogging gig, friends and family and a life. I wish

the same to any of you who are willing to stop the petty bickering

and go out and get it for yourselves.

> Goodbye.

>> Sara

Did anyone in this group ever say that the illness was NOT ME?

I thought it was rather the opposite, that ME is exactly as Ramsay

described, and that Canadian Guidelines ME/CFS (Original CFS) is

ALSO ME.

And as far as I know, while stress is not good in any illness,

there is no amount of stress, however severe, in recorded history

that consistently or even sporadically resulted in either ME or CFS.

Certainly not in a reproducible fashion.

I believe that we are just asking that people refrain from

implicating stress as causative, or as anything more than an

exacerbating factor, so that psychologizers and their therapies can

be dismissed from serious consideration and application.

Does anyone believe that if Wessely had been present during your

decline and prior to onset of clinical severity, and whisked you

into a clinic for pre-emptive counseling and antidepressant therapy-

that your illness would have been successfully circumvented?

If one has an ME diagnosis, one should certainly use it.

But if someone with a CFS diagnosis has the same illness, would it

be fair to tell them that they are suffering from nothing more than

fatigue, no matter what Dr Cheney, , the Canadian Guidelines

and a mountain of research and evidence says?

Certainly CFS is a degrading name, but the history of this illness

cannot be erased by adopting the stance that a serious and disabling

illness was really nothing more than: " CFS? Oh yes, I get tired too,

sometimes " .

Because that isn't how CFS happened.

And is why, if you fulfil the requirements of the Canadian Consensus

Criteria - your case of CFS can be called ME as a matter of

scientific fact, as verified by the authors of the Canadian

Guidelines, who refuse to accept that their presentation of CFS was

invalid and inaccurate.

-

__________________________________________________

[Guest guest]

Hi, Sara.

Don't leave. Please stay on this list as you have so much to contribute towards

its

purpose. The debates you describe and feel stressed by are generally off topic

on this list

as per this lists rules.

They really belong to sites dedicated to the political discourse surrounding

ME/CFS, not

here where they are irrelevant. What's relevant here is NOT definitions or

names, right or

wrong nor who the bad guys are, but treatment.

You are perfectly within you rights here to ignore such posts, remind the poster

succinctly

that they are off topic or report their actions to the list moderators to deal

the problem if

you care not to deal with the offenders. Respectfully sticking to only those

posts and

posters interested in treatment for effectively conquering ME/CFS is doing

exactly what

this list is for.

I think doing this could effectively resolve what is spurning you to leave.

<mercuria@...> wrote:

>

> I've been sick for 22 years now.

>

> But I think I'm on the wrong list. Whatever I have, it's not ME. At

> least, that's what I keep hearing from you people.

>

> It can't be ME because I actually experienced stress before I got

> sick. And since it's un-PC to say that this is in any way related to

> stress, I clearly don't belong here.

>

> It can't be ME because I have excellent reason to suspect the

> presence of a genetic component -- damn near irrefutable in my case,

> in fact. And since it's un-PC to say this is in any way a matter of

> " bad genes, " I clearly don't belong here.

>

> It can't be ME because I insist on using that name, instead of

> accepting the martyrdom that comes with the ridiculous one cooked up

> by the CDC. And since it's un-PC to foreswear a stupid name that

> means nothing in favor of a clear diagnosis that does, I clearly

> don't belong here.

>

> Apparently, it can't even be ME even when the guy who wrote the best

> CFS/ME definition in the world examined me yesterday and told me, no

> question, that what I have is DEFINITELY ME.

>

> So you can all go squabble among yourselves about the politically

> correct definition of whatever it is you have. The infighting so

> much more important than silly facts and science anyway. Or the

> opinion of any doctor, for that matter.

>

> There is not enough energy in me to allow this list to sap any more

> of it. I have better things to do -- a degree to finish, a new (and

> very hot) blogging gig, friends and family and a life. I wish the

> same to any of you who are willing to stop the petty bickering and go

> out and get it for yourselves.

>

> Goodbye.

>

> Sara

>

[Guest guest]

" davidhall2020 " wrote:

> What's relevant here is NOT definitions or names, right or wrong

nor who the bad guys are, but treatment.

>

In order for people to share treatment ideas for " CFS " , shouldn't

they have some basic agreement on what " CFS " is?

If one says CFS and is thinking ME/CFS and another is referring to

some kind of fatigue condition that is nothing like ME, how can

they swap treatment ideas in a meaningful way?

When someone says " I cured my CFS by reducing stress and taking

Vitamins " , I can't help but be a little suspicious that their " CFS

treatment " isn't going to work for me.

Am I correct in assuming that you are going along with the CG by

using ME/CFS, which is making a statement about the relevance of

which definition you are using?

-

[Guest guest]

Hi, .

" erikmoldwarrior " <erikmoldwarrior@...> wrote:

>

> " davidhall2020 " wrote:

> > What's relevant here is NOT definitions or names, right or wrong

> nor who the bad guys are, but treatment.

> >

>

>

> In order for people to share treatment ideas for " CFS " , shouldn't

> they have some basic agreement on what " CFS " is?

***Not necessarily and the politics of it makes coming to any basic agreement

almost

impossible at this time. It's certainly a mess that won't get resolved on this

treatment list

and does go off its purpose. Nevertheless, most posters seem to eventually

figure out if

this list is for their CFS, ME/CFS or whatever they or their docs have diagnosed

them with.

> If one says CFS and is thinking ME/CFS and another is referring to

> some kind of fatigue condition that is nothing like ME, how can

> they swap treatment ideas in a meaningful way?

***It comes out in the mix eventually through several posts. I've seen a few

who realized

after a few weeks or so that they were dealing with a different animal

altogether though

the symptom of chronic fatigue was indeed a symptom they had leading them to

this list.

It ain't efficient and the CFS label is tragic, but it's the way it is and this

list is literally not

dedicated to resolving this political issue.

When someone says " I cured my CFS by reducing stress and taking

> Vitamins " , I can't help but be a little suspicious that their " CFS

> treatment " isn't going to work for me.

***Technically, your CFS was created by stress, but I know what you're talking

about as the

word stress has become one errantly associated exclusively to psychological

responses

rather than upstream matters(stressors) of much greater relevance to etiology.

Wading

through the morass and specifics of anyone's diagnosis who makes this claim is

about the

only way to resolve this valid type of suspicion.

>

> Am I correct in assuming that you are going along with the CG by

> using ME/CFS, which is making a statement about the relevance of

> which definition you are using?

***I consistently vary the terms I use from ME/CFS to CFS to PWC so as not to

get too

overly entangled on the topic and stick to the point of treatment on this list.

I do have an

opinion and would like to see the CF label go and definitions get tighter and

more

homogenous, but again, that conversation never goes anywhere productive on this

list and

it is political, ie, off topic here.

***

>