misc

[Guest guest]

In a message dated 4/18/2007 10:23:32 A.M. Eastern Standard Time,

jpfolkert@... writes:

Our dd will be going off to college in the fall, the college does know

about it. Information regarding the OCD diagnosis went on her

roomate application, it also went on the health form. You can't really

hide it too well when you have to fill out meds on the health form.

Yes, if you have to fill out information about medication, you really can't

hide it. My son (nonOCD) is getting ready to move off to college also.... it

made me think about what if it was my dd getting ready to go. If she was

still living at home I don't think I would say anything - but living away from

home, I would definitely want the school to know. At least then if anything

were to happen, they would be aware of what was going on & might be able to

help out. If they're in the dark about it, she might not get the help she

needs right away. At least I still have a couple of years to think about all

that...

LT

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi ,

I bet you were probably feeling a bit overwhelmed at the rheumys

office and didn't think to ask why about the alcohol. If he/she

simply didn't bother to explain, I'd be a bit wary. The important

thing for all of us is to ask questions, get answers we understand.

If a rheumy doesn't want to be bothered by questions or explaining

treatment, I'd immediately look for a new rheumy. It could be he/she

assumed you knew why or figured you would ask if you didn't.

Even though my rheumy knows I frequent this and other sites, I tell

him to pretend I do not know anything, that allows me to hear his

perspective and allows me to filter what may not be 100% correct in

my mind. And I always ask questions, if he seems hurried or wanting

to end the appointment, I ask if I should schedule another time to

have my questions answered. He always says " No " and patiently

answers.

Stay Well,

[Guest guest]

There is no moderator activity showing for deleted messages yesterday or today

-- I'm guessing that it got lost somewhere in cyberspace and never actually

posted.

>

> I posted a comment about the sister group and this morning it is gone. Who

took it out? Interesting

>

> Sandy

[Guest guest]

I find it insulting that someone would set up a duplicate group and try to

recruit us ( with the notion that the people on here are not serious) just to

make a buck. I am actually mad about it and sent them an email stating my

disgust.

> From: bigbrillohead <imahockeymom@...>

> Subject: Re: misc

> achalasia

> Date: Tuesday, June 29, 2010, 12:37 PM

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[Guest guest]

Ok I just reread the email and he wasn't implying that we aren't serious. Oops

my bad. I guess I am not in a good mood today:(

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> > From: bigbrillohead <imahockeymom@...>

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[Guest guest]

He " owns " this group which is part of a whole rare disease group he started.

Not sure how it all works, but I assume he gets revenue for each ad we might

click on.

Others will know much more than me about this. Years ago, when I first joined,

I saw the list of the groups and our group was one of the most active, if not

the most active one. There is something about just the right size for a group

and the rareness of it that makes a group so dynamic.

I am VERY sure my message was sent and appeared here, I assume the owner can

remove messages and the moderators would not know. It was not a mean message,

just questioning how everyone else felt. At that point I hadn't given my

opinion.

To each their own. If I was still needing treatment I might pay, but I wouldn't

pay up front, seems like any membership asking for $$ up front before you know

what the group is like is going to prevent new members from joining.

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[Guest guest]

I saw it...

________________________________

From: toomuchclutter <sandycarroll@...>

achalasia

Sent: Tue, June 29, 2010 11:12:40 AM

Subject: misc

I posted a comment about the sister group and this morning it is gone. Who took

it out? Interesting

Sandy

[Guest guest]

>

> He " owns " this group which is part of a whole rare disease group he started.

Not sure how it all works, but I assume he gets revenue for each ad we might

click on.

Well, technically " owns " the group, and gets all the advertising

dollars. Mr. started this Group originally, but he doesn't get ANY

money AT ALL from this site.... which is probably why he's started up the old

CarePlace and now this new " sister " site, which he WILL receive the profits

from.

I am an " owner " of some other groups here (private groups that were formed for

family reunions, friend communications, etc.), and all that being an " owner "

means is that you're a " super-moderator " with the ability to assign moderator or

owner status to other members and the ability to permanently close the group.

" owners " should more rightfully be called " originators " or " charter

members " rather than owners, because they have nothing to do with servers,

software, internet connection, or anything else like that -- simply moderator

power over the group's activities.

With that being said, I don't agree with the idea that one single person holds

ALL of the power. With a couple of mouse clicks, this board could disappear off

the face of the earth. In the case of my small, private groups for family

reunions, etc., that's no big deal -- it only affects those few members. But

for a big, relatively-public group such as this one, which has a HUGE

educational value for a substantial number of people around the globe, it would

be nice if there were some controls in place to protect our interests.

But ultimately, all that control is in the hands of just one person.

Debbi in Michigan

[Guest guest]

When do you tell, or do you tell your child he/she has Asperger's? My son is 7 and he knows somethings up because we've been talking a lot lately about the subject but not directly at him. He hasn't asked yet, but I know he will. He knows he has ADHD but to him that just translates to "I'm too hyper right now and I can't control it" or "I need help to focus" etc and it doesn't bother him. Do any of the kids that we're told, did they get upset?

Thanks

[Guest guest]

My son was 12 when diagnosed. We just told him this year after texting social

skills issues became a problem, he's 15 now. This was all with the direction of

his psychologist who felt it was time to understand what and why " friends " were

saying what they were. This worked for us as he was more mature and it was

coming from her not us. This also enabled us to teach him that he can't use the

diagnosis to manipulate. Hope this helps.

Sent from my Verizon Wireless Phone

Cathleen Veloria <cathleen.veloria@...> wrote:

>When do you tell, or do you tell your child he/she has Asperger's? My son is 7

>and he knows somethings up because we've been talking a lot lately about the

>subject but not directly at him. He hasn't  asked yet, but I know he will. He

>knows he has ADHD but to him that just translates to " I'm too hyper right now

>and I can't control it " or " I need help to focus " etc and it doesn't bother

him.

>Do any of the kids that we're told, did they get upset?

>

>Thanks

>

>

>

[Guest guest]

Yes, thanks. I will tell him when the time is right.

Cathleen

From: <mcuttler@...> Sent: Wed, September 22, 2010 8:58:03 AMSubject: Re: ( ) misc

My son was 12 when diagnosed. We just told him this year after texting social skills issues became a problem, he's 15 now. This was all with the direction of his psychologist who felt it was time to understand what and why "friends" were saying what they were. This worked for us as he was more mature and it was coming from her not us. This also enabled us to teach him that he can't use the diagnosis to manipulate. Hope this helps.Sent from my Verizon Wireless PhoneCathleen Veloria <cathleen.veloria@...> wrote:>When do you tell, or do you tell your child he/she has Asperger's? My son is 7 >and he knows somethings up because we've been talking a lot lately about the >subject but not directly at him. He hasn't asked yet, but I know he will. He >knows he

has ADHD but to him that just translates to "I'm too hyper right now >and I can't control it" or "I need help to focus" etc and it doesn't bother him. >Do any of the kids that we're told, did they get upset?>>Thanks>>>

[Guest guest]

Thanks, I will tell him. Even if he doesn't quite understand it, at least it's out on the table and not something we have to whisper about all the time.

Cathleen

From: and/or Robin Lemke <jrisjs@...> Sent: Wed, September 22, 2010 9:48:47 AMSubject: Re: ( ) misc

Hi,

We told our son the minute we knew. FIgured it'd be best to make it seem just a part of his life.

He never got mad. Was just like, "oh".

Good luck - don't make more of it than it is, honestly. You stay calm - and he won't think of it as something horrific. Just something he has. I told my son, "Hey, I'm overweight". We all have something.

Again, good luck.

Hugs.

Robin

And when the broken hearted people living in the world agree, there will be an answer, let it be. For though they may be parted there is still a chance that they will see, there will be an answer. let it be.

From: Cathleen Veloria <cathleen.veloria@...>Subject: ( ) misc Date: Tuesday, September 21, 2010, 10:06 PM

When do you tell, or do you tell your child he/she has Asperger's? My son is 7 and he knows somethings up because we've been talking a lot lately about the subject but not directly at him. He hasn't asked yet, but I know he will. He knows he has ADHD but to him that just translates to "I'm too hyper right now and I can't control it" or "I need help to focus" etc and it doesn't bother him. Do any of the kids that we're told, did they get upset?

Thanks

[Guest guest]

We told our son last year after we got his diagnosis and read up on the subject about his Asperger's. He's 9 now. He was very accepting. We told him about the many famous people that they suspect of having AS. This list includes people like Einstein, lin, da Vinci, Van Gogh, Beethoven and even Elvis and . Now they're not sure about these people having AS, but there were traits in all of them and MANY more. It thought that was kind of cool. And we explained to him a little bit about what it means to have AS. We're hoping that as time goes on we can learn more and teach him and then he can explain it to others.

Beth

( ) misc

When do you tell, or do you tell your child he/she has Asperger's? My son is 7 and he knows somethings up because we've been talking a lot lately about the subject but not directly at him. He hasn't asked yet, but I know he will. He knows he has ADHD but to him that just translates to "I'm too hyper right now and I can't control it" or "I need help to focus" etc and it doesn't bother him. Do any of the kids that we're told, did they get upset?

Thanks

[Guest guest]

It may be different for my daughter because she was 13, but she was relieved. She knew all along there was something different about her, and she would get very frustrated with herself. When she was diagnosed with AS this summer, it gave her the answers an she knew she would get the support she needed. From: cathleen.veloria@...Date: Tue, 21 Sep 2010 20:06:21 -0700Subject: ( ) misc

When do you tell, or do you tell your child he/she has Asperger's? My son is 7 and he knows somethings up because we've been talking a lot lately about the subject but not directly at him. He hasn't asked yet, but I know he will. He knows he has ADHD but to him that just translates to "I'm too hyper right now and I can't control it" or "I need help to focus" etc and it doesn't bother him. Do any of the kids that we're told, did they get upset?

Thanks

[Guest guest]

I was honest with my son from the beginning. I told him you have Aspergers. what is that? i explained it to him and we try to work on one issue at a time. usually doesn't work or is very slow, but we have a saying "together we can what" "do anything". shirley

From: Barbara Pinckney <b-pinckney@...>Aspergers Treatment Sent: Fri, September 24, 2010 10:44:29 AMSubject: RE: ( ) misc

It may be different for my daughter because she was 13, but she was relieved. She knew all along there was something different about her, and she would get very frustrated with herself. When she was diagnosed with AS this summer, it gave her the answers an she knew she would get the support she needed.

From: cathleen.veloria@...Date: Tue, 21 Sep 2010 20:06:21 -0700Subject: ( ) misc

When do you tell, or do you tell your child he/she has Asperger's? My son is 7 and he knows somethings up because we've been talking a lot lately about the subject but not directly at him. He hasn't asked yet, but I know he will. He knows he has ADHD but to him that just translates to "I'm too hyper right now and I can't control it" or "I need help to focus" etc and it doesn't bother him. Do any of the kids that we're told, did they get upset?

Thanks

[Guest guest]

thank you for your reply, I will tell him.

Cathleen

From: Barbara Pinckney <b-pinckney@...>Aspergers Treatment Sent: Fri, September 24, 2010 10:44:29 AMSubject: RE: ( ) misc

It may be different for my daughter because she was 13, but she was relieved. She knew all along there was something different about her, and she would get very frustrated with herself. When she was diagnosed with AS this summer, it gave her the answers an she knew she would get the support she needed.

From: cathleen.veloria@...Date: Tue, 21 Sep 2010 20:06:21 -0700Subject: ( ) misc

When do you tell, or do you tell your child he/she has Asperger's? My son is 7 and he knows somethings up because we've been talking a lot lately about the subject but not directly at him. He hasn't asked yet, but I know he will. He knows he has ADHD but to him that just translates to "I'm too hyper right now and I can't control it" or "I need help to focus" etc and it doesn't bother him. Do any of the kids that we're told, did they get upset?

Thanks

[Guest guest]

I used the book " All Cat's have Asperger's Syndrome " Kathy Hooper. It's an

on-going thing though, and we don't actually use the AS term much (as he tends

to try and use it as an excuse).

Miranda

>

> When do you tell, or do you tell your child he/she has Asperger's? My son is 7

> and he knows somethings up because we've been talking a lot lately about the

> subject but not directly at him. He hasn't  asked yet, but I know he will. He

> knows he has ADHD but to him that just translates to " I'm too hyper right now

> and I can't control it " or " I need help to focus " etc and it doesn't bother

him.

> Do any of the kids that we're told, did they get upset?

>

> Thanks

>

[Guest guest]

thank you Shirley, I will tell my son. I agree with you that it's best to have that communication with him now.

Cathleen

From: Shirley <shirleycarter80@...> Sent: Fri, September 24, 2010 12:46:25 PMSubject: Re: ( ) misc

I was honest with my son from the beginning. I told him you have Aspergers. what is that? i explained it to him and we try to work on one issue at a time. usually doesn't work or is very slow, but we have a saying "together we can what" "do anything". shirley

From: Barbara Pinckney <b-pinckney@...>Aspergers Treatment Sent: Fri, September 24, 2010 10:44:29 AMSubject: RE: ( ) misc

It may be different for my daughter because she was 13, but she was relieved. She knew all along there was something different about her, and she would get very frustrated with herself. When she was diagnosed with AS this summer, it gave her the answers an she knew she would get the support she needed.

From: cathleen.veloria@...Date: Tue, 21 Sep 2010 20:06:21 -0700Subject: ( ) misc

When do you tell, or do you tell your child he/she has Asperger's? My son is 7 and he knows somethings up because we've been talking a lot lately about the subject but not directly at him. He hasn't asked yet, but I know he will. He knows he has ADHD but to him that just translates to "I'm too hyper right now and I can't control it" or "I need help to focus" etc and it doesn't bother him. Do any of the kids that we're told, did they get upset?

Thanks

[Guest guest]

Hello Miranda,

How is that Book? I saw it on Amazon when I was buying a whole bunch of ADHD and AS books, but didn't buy that one. I will if it's good though, I'm trying to get all the info I can.

Also, may I ask how he uses AS as an excuse? I still haven't told my son, but a lot of posts here says I should. Any info you can give me is great,

Thanks,

Cathleen

From: baileybear64 <baileybear64@...> Sent: Fri, September 24, 2010 7:18:43 PMSubject: ( ) Re: misc

I used the book "All Cat's have Asperger's Syndrome" Kathy Hooper. It's an on-going thing though, and we don't actually use the AS term much (as he tends to try and use it as an excuse).Miranda>> When do you tell, or do you tell your child he/she has Asperger's? My son is 7 > and he knows somethings up because we've been talking a lot lately about the > subject but not directly at him. He hasn't asked yet, but I know he will. He > knows he has ADHD but to him that just translates to "I'm too hyper right now > and I can't control it" or "I need help to focus" etc and it doesn't bother him. > Do any of the kids that we're told, did they get upset?>

> Thanks>

[Guest guest]

I have heard the same thing from a variety of informed sources. Our

developmental therapist said that it goes in cycles. Researchers prefer to have

clearly defined categories and diagnoses because it makes it easier to conduct

trials and study a condition. However, when things start to get too narrowly

defined, the doctors have a hard time fitting real people into those little

boxes, so the trend moves back to generalization. And then probably back the

other way eventually.

Bridget

> >>

> >> When do you tell, or do you tell your child he/she has Asperger's? My son

is 7

> >

> >> and he knows somethings up because we've been talking a lot lately about

the

> >> subject but not directly at him. He hasn't  asked yet, but I know he will.

He

> >> knows he has ADHD but to him that just translates to " I'm too hyper right

now

> >> and I can't control it " or " I need help to focus " etc and it doesn't bother

> >>him.

> >>

> >> Do any of the kids that we're told, did they get upset?

> >>

> >> Thanks

> >>

> >

> >

> >

> >

> >

>

[Guest guest]

Right after Maddie got her DX we bought that book after a friend suggested it. It was a wonderful workbook!

Mom to my 4 girls

Madeline, Cayla, Arabella, & Vincenza

"You are the TRIP I did not take

You are the PEARLS I cannot buy

You are the blue Italian LAKE

YOU are my piece of foreign SKY"

---Anne ----

( ) Re: misc

I told my 8 year old shortly after he was diagnosed with Asperger's this year. His reaction was one of relief. He said he knew there was something different about him. I read a workbook with him entitled Asperger's... What Does It Mean To Me? by Faherty. It seemed to help him self reflect. The only thing that made me uncomfortable about the book was that it uses the term "autism" more than "Asperger's".

>

> When do you tell, or do you tell your child he/she has Asperger's? My son is 7

> and he knows somethings up because we've been talking a lot lately about the

> subject but not directly at him. He hasn't asked yet, but I know he will. He

> knows he has ADHD but to him that just translates to "I'm too hyper right now

> and I can't control it" or "I need help to focus" etc and it doesn't bother him.

> Do any of the kids that we're told, did they get upset?

>

> Thanks

>

[Guest guest]

when Maddie got her dx they said one thing, but put another on paper because we would get more services.

Mom to my 4 girls

Madeline, Cayla, Arabella, & Vincenza

"You are the TRIP I did not take

You are the PEARLS I cannot buy

You are the blue Italian LAKE

YOU are my piece of foreign SKY"

---Anne ----

( ) Re: misc

>

>

>I told my 8 year old shortly after he was diagnosed with Asperger's this year.

>His reaction was one of relief. He said he knew there was something different

>about him. I read a workbook with him entitled Asperger's... What Does It Mean

>To Me? by Faherty. It seemed to help him self reflect. The only thing

>that made me uncomfortable about the book was that it uses the term "autism"

>more than "Asperger's".

>

>

>

>>

>> When do you tell, or do you tell your child he/she has Asperger's? My son is 7

>

>> and he knows somethings up because we've been talking a lot lately about the

>> subject but not directly at him. He hasn't asked yet, but I know he will. He

>> knows he has ADHD but to him that just translates to "I'm too hyper right now

>> and I can't control it" or "I need help to focus" etc and it doesn't bother

>>him.

>>

>> Do any of the kids that we're told, did they get upset?

>>

>> Thanks

>>

>

>

>

>

>

[Guest guest]

Hello Beth and Dave,

Thanks for your response. I will try that. He will not understand who those people are, but I will just say "famous People" and that will be good enough

Cathleen

From: Beth & Dave Schmidt <bethndave@...> Sent: Thu, September 23, 2010 11:56:31 AMSubject: Re: ( ) misc

We told our son last year after we got his diagnosis and read up on the subject about his Asperger's. He's 9 now. He was very accepting. We told him about the many famous people that they suspect of having AS. This list includes people like Einstein, lin, da Vinci, Van Gogh, Beethoven and even Elvis and . Now they're not sure about these people having AS, but there were traits in all of them and MANY more. It thought that was kind of cool. And we explained to him a little bit about what it means to have AS. We're hoping that as time goes on we can learn more and teach him and then he can explain it to others.

Beth

( ) misc

When do you tell, or do you tell your child he/she has Asperger's? My son is 7 and he knows somethings up because we've been talking a lot lately about the subject but not directly at him. He hasn't asked yet, but I know he will. He knows he has ADHD but to him that just translates to "I'm too hyper right now and I can't control it" or "I need help to focus" etc and it doesn't bother him. Do any of the kids that we're told, did they get upset?

Thanks

[Guest guest]

I told my Liz the same thing. I didn't know about all of those people you mentioned, but I mentioned Einstein, Edison, Bill Gates and Al Gore as people who have AS traits (whether or not they actually have AS). It made her feel in good company. From: bethndave@...Date: Thu, 23 Sep 2010 13:56:31 -0500Subject: Re: ( ) misc

We told our son last year after we got his diagnosis and read up on the subject about his Asperger's. He's 9 now. He was very accepting. We told him about the many famous people that they suspect of having AS. This list includes people like Einstein, lin, da Vinci, Van Gogh, Beethoven and even Elvis and . Now they're not sure about these people having AS, but there were traits in all of them and MANY more. It thought that was kind of cool. And we explained to him a little bit about what it means to have AS. We're hoping that as time goes on we can learn more and teach him and then he can explain it to others.

Beth

( ) misc

When do you tell, or do you tell your child he/she has Asperger's? My son is 7 and he knows somethings up because we've been talking a lot lately about the subject but not directly at him. He hasn't asked yet, but I know he will. He knows he has ADHD but to him that just translates to "I'm too hyper right now and I can't control it" or "I need help to focus" etc and it doesn't bother him. Do any of the kids that we're told, did they get upset?

Thanks

[Guest guest]

We told our son when he was in 5th grade (didn't get the diagnosis until 4th

grade although he started having significant problems in 1st grade). Two things

happened: the next day he informed his teacher that he couldn't do his

classwork because he has Aspergers. LOL. We disabused him of that notion that

evening. The second thing was more of a problem. He's our youngest son and two

of his older brothers also have AS. Both of them have significant issues. One

is somewhat more autistic than you would usually expect with an AS diagnosis.

The other has problems with emotional control. He's not violent toward other

people, but he cries and makes scenes that get him in trouble on a regular

basis. I believe our youngest son immediately started worrying that he was

going to have the same sorts of problems as his brothers. I assured him that

every person with AS is different from every other person. He isn't like his

brothers. Then we went over some of the ways that AS makes his life difficult.

The most significant one to him was the fact that he has a great deal of trouble

with behaving in ways that don't alienate other children. I told him we would

work on that, and it would get better. I also told him that his ability to

learn things about science is one of the positive things that AS gives him. He

liked that because he's proud of all the stuff he knows. I believe it was a

balanced discussion. Our son seems to have welcomed the information that

there's a reason for some of his difficulties--that they don't mean that he's a

bad boy--but instead are things that challenge him but that can be improved with

extra effort. I think a matter-of-fact presentation along with reassurance and

an emphasis on positive aspects makes it relatively easy for children to process

how AS fits into their lives.

Sue C.