Frustration

[Guest guest]

I

> Ankylosing spondylitis (AS) and rheumatoid arthritis (RA) are two distinct

> diseases. It is unusual for a given individual to have both AS and RA.>>>>>>>

>

>

>

Huh?

But ankylosing spondylitis (AS) is listed under types of rheumatoid

arthritis.

http://www.rheumatology.org/public/factsheets/as.asp?aud=pat

Ankylosing spondylitis (AS) is a rheumatic disease that causes arthritis of

the spine and sacroiliac joints and can cause inflammation of the eyes, lungs,

and heart valves. It varies from intermittent episodes of back pain that occur

throughout life to a severe chronic disease that attacks the spine,

peripheral joints and other body organs, resulting in severe joint and back

stiffness,

loss of motion and deformity as life progresses.

Pris

[Guest guest]

Ankylosing spondylitis (AS) and rheumatoid arthritis (RA) are two distinct

diseases. It is unusual for a given individual to have both AS and RA.

American College of Rheumatology

" Ankylosing Spondylitis " :

http://www.rheumatology.org/public/factsheets/as.asp

" Rheumatoid Arthritis " :

http://www.rheumatology.org/public/factsheets/ra_new.asp

Not an MD

Re: [ ] Frustration

>

> I

>

>

>> Seems I've read

>> that RA seldom affects the spine so should I continue with the ortho

>> for the back pain? I>>>>>

>>

>

> I have arthritis of the spine, Ankylosing Spondilitis (sp).

> It (RA) DEFINITELY effects the spine .

> I would ask your RA about this and am surprised he has not mentioned

> it....

> I cannot stand with out pain (stenosis of the spine from RA) or sit from

> pain

> hip bursitis from RA, probably.

> Do a Google on AS (RA of the spine).

> Good luck,

> Pris

[Guest guest]

Have you tried a chiropractor? Last month my rheumy suggested injections into

my back, but a chiropractor was all that I needed to fix the pain in my back;

" sit-down bones " ; and the pain when getting up from a sitting position. I also

was unable to sleep because of the pain in my lower back. Today I am about 80%

better, but the chiro said after a few more sessions that too will improve. What

a difference he has made.

Patsy

El Mirage, AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA/COPD

Just a woman of letters....

[Guest guest]

Don't think that is true. RA can and does affect the spine. Particularly the

neck area. I see my chiropractor regularly. He has helped tremendously with

back pain. My neck used to kill me when I would flare. Now, even when I flare,

my neck feels okay.

Might want to check the pics on RA/neck. There are x-rays with comments

about how it can pinch the spinal cord at the neck wreaking havoc, although that

might be the extreme.

in Texas

NELLIESTAR@... wrote:

I

> Seems I've read

> that RA seldom affects the spine so should I continue with the ortho

> for the back pain? I>>>>>

>

I have arthritis of the spine, Ankylosing Spondilitis (sp).

It (RA) DEFINITELY effects the spine .

I would ask your RA about this and am surprised he has not mentioned it....

I cannot stand with out pain (stenosis of the spine from RA) or sit from pain

hip bursitis from RA, probably.

Do a Google on AS (RA of the spine).

Good luck,

Pris

**************************************

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

[Guest guest]

That is interesting, . According to another site, Medline,

Ankylosing spondylitis is also known as Rheumatoid spondylitis. Both

my rheumatologist and my brothers said Ankylosing spondylitis is a

type of rheumatoid arthritis.

Jodi

--- In , " " <Matsumura_Clan@...>

wrote:

>

> Ankylosing spondylitis (AS) and rheumatoid arthritis (RA) are two

distinct

> diseases. It is unusual for a given individual to have both AS and

RA.

>

>

>

> American College of Rheumatology

>

> " Ankylosing Spondylitis " :

> http://www.rheumatology.org/public/factsheets/as.asp

>

>

> " Rheumatoid Arthritis " :

> http://www.rheumatology.org/public/factsheets/ra_new.asp

>

>

>

>

> Not an MD

>

>

> Re: [ ] Frustration

>

>

> >

> > I

> >

> >

> >> Seems I've read

> >> that RA seldom affects the spine so should I continue with the

ortho

> >> for the back pain? I>>>>>

> >>

> >

> > I have arthritis of the spine, Ankylosing Spondilitis (sp).

> > It (RA) DEFINITELY effects the spine .

> > I would ask your RA about this and am surprised he has not

mentioned

> > it....

> > I cannot stand with out pain (stenosis of the spine from RA) or

sit from

> > pain

> > hip bursitis from RA, probably.

> > Do a Google on AS (RA of the spine).

> > Good luck,

> > Pris

>

[Guest guest]

,

I am so sorry you are having such pain and the RA doctor doesn't seem to be

helping. I do not have any suggestions just wanted you to know I understand and

I am so sorry.

It is hard we try to do what we can but without the doctors help we can not

get what we need and it burns me up they totally know that.

Hang in there we are here for you.

Marsha

[ ] Frustration

Evening all. I'm really frustrated and need to vent. I had a severe

flare (from RA and OA) 3 weeks ago to the point I could hardly walk.

I went to the Ortho and he gave me a cortizone shot in my hip joint

saying my back pain was coming from my hips being so bad. Hurt like

crap and didn't help. Went to the rheumy that afternoon and he said

my whole body was inflamed badly, suspended the MTX injections and

put me on Medrol. He was very insulted that I had gone to the Ortho

without consulting him. I didn't realize until day 3 on the medrol

how bad I felt before I started it. It was great....as long as it

lasted. Over the last 3 weeks my spine has gotten so bad that it is

literally crunching when i move, not to mention the pain. I can't

sit or stand, and the last two nights I've not been able to lay down

without pain. So, went back to the rheumy today, again in pain,

swollen and almost immobile. He resumed the MTX injections at the

same low dose, refused to give me anything oral for pain (gave me

lidocain patches and a cream) and seemed indignant when I asked him

if I needed to continue to see the Ortho about the spinal pain. He's

the only doctor within 100 miles and I just don't know what to do.

He didn't seem that my spine crunching when I move warranted an MRI

or anything! All he said was " if I'm not making you better someone

needs to " and changed the subject. I am so tired of pain and doctors

and trying to figure out who to see for what pain? Seems I've read

that RA seldom affects the spine so should I continue with the ortho

for the back pain? I don't know what to do.

Thanks for giving me a place to " let this all out " .

[Guest guest]

I am finding Ankylosing spondylitis is a rheumatic arthritis of the

spine......according to every source we have come up with.. (not that we have

read

them all).

see below. In the brochures our rheumy gave us, it describes it as arthritis

of the spine....

see below, where the " rheumatoid " comes in)

Ankylosing spondylitis is a form of chronic inflammation of the spine and the

sacroiliac joints. The sacroiliac joints are located in the low back where

the sacrum (the bone directly above the tailbone) meets the iliac bones (bones

on either side of the upper buttocks). Chronic inflammation in these areas

causes pain and stiffness in and around the spine. Over time, chronic spinal

inflammation (spondylitis) can lead to a complete cementing together (fusion) of

the vertebrae, a process referred to as ankylosis. Ankylosis leads to loss of

mobility of the spine.

Ankylosing spondylitis is also a systemic rheumatic disease, meaning it can

affect other tissues throughout the body.

> Are you saying it is not arthritis or nor a rheumatic disease?

> Thanks,

Pris

[Guest guest]

Pris,

Ankylosing spondylitis (AS) classified as a rheumatic disease, specifically,

one of the spondyloarthropathies. Rheumatoid arthritis (RA) is also a

rheumatic disease. AS is not a subset of RA.

American College of Rheumatology

" Spondyloarthritis (Spondyloarthropathies) " :

http://rheumatology.org/public/factsheets/spondylitis_new.asp?aud=pat

Not an MD

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

In , NELLIESTAR@... wrote:

I

> Ankylosing spondylitis (AS) and rheumatoid arthritis (RA) are two

distinct

> diseases. It is unusual for a given individual to have both AS and

RA.>>>>>>>

>

>

>

Huh?

But ankylosing spondylitis (AS) is listed under types of rheumatoid

arthritis.

http://www.rheumatology.org/public/factsheets/as.asp?aud=pat

Ankylosing spondylitis (AS) is a rheumatic disease that causes

arthritis of

the spine and sacroiliac joints and can cause inflammation of the

eyes, lungs,

and heart valves. It varies from intermittent episodes of back pain

that occur

throughout life to a severe chronic disease that attacks the spine,

peripheral joints and other body organs, resulting in severe joint

and back stiffness,

loss of motion and deformity as life progresses.

Pris

[Guest guest]

Jodi,

Medline is listing " rheumatoid spondylitis " as a synonym for ankylosing

spondylitis under the heading " Alternative names "

(http://www.nlm.nih.gov/medlineplus/ency/article/000420.htm and

http://www.nlm.nih.gov/medlineplus/ankylosingspondylitis.html); however,

this description of ankylosing spondylitis is outdated and misleading. But

Medline wants you to be able to find the information you need on ankylosing

spondylitis, no matter what name you know it by.

Years ago, ankylosing spondylitis was thought to be a form of rheumatoid

arthritis; that is no longer true. Notice that in the definition of

ankylosing spondylitis at Medline that it is not said that it is a type of

rheumatoid arthritis.

Ankylosing spondylitis is one of the spondyloarthropathies.

Ankylosing spondylitis is also referred to as Marie-Strümpell arthritis and

Bechterew disease.

I will post more on this issue separately.

Not an MD

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

In , " Jodi " <kathousefl@...> wrote:

That is interesting, . According to another site, Medline,

Ankylosing spondylitis is also known as Rheumatoid spondylitis. Both

my rheumatologist and my brothers said Ankylosing spondylitis is a

type of rheumatoid arthritis.

Jodi

[Guest guest]

yes, you are right, it definitely does. I do find, however, that hot showers

directed to the neck and shoulders (suggested by my Rheumy) do help. Also I take

a hot shower, head and all, step out of shower, put on a huge heavy terry cloth

bathrobe and with heavy towel wrapped round head and neck, go get in my big

chair and just soak in my little cocoon of warmth....helps me all over. like

taking a sauna. It's even better if the shower was preceded by a hot Epsom salt

bath, but sometimes I don't feel like getting up from down in the tub <G>

lee

---- Pou wrote:

> Don't think that is true. RA can and does affect the spine. Particularly the

neck area. I see my chiropractor regularly. He has helped tremendously with back

pain. My neck used to kill me when I would flare. Now, even when I flare, my

neck feels okay.

>

> Might want to check the pics on RA/neck. There are x-rays with comments

about how it can pinch the spinal cord at the neck wreaking havoc, although that

might be the extreme.

>

> in Texas

[Guest guest]

Sandy ~

Priceless ! I just laughed so hard, and it was

all tooooo familiar......lololol.......

Love N Hugs~

DedeSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Thank you Sandy...I have been there...love you...Lea

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~````````

FRUSTRATION

When you have to visit a public bathroom, you usually find a line of women, so you smile politely and take your place. Once it's your turn,you check for feet under the stall doors. Every stall is occupied.

Finally, a door opens and you dash in, nearly knocking down the woman

leaving the stall.You get in to find the door won't latch. It doesn't matter,

the wait has been so long you are about to wet your pants! The dispenser

for the modern seat covers(invented by someone's Mom, no doubt) is handy,

but empty. You would hang your purse on the door hook, if there was one,

but there isn't - so you carefully,but quickly drape it around your neck,

Mom would turn over in her grave if you put it on the FLOOR!, yank

down your pants, and assume " The Stance." In this position your aging, toneless thigh muscles begin to shake.

You'd love to sit down, but you certainly hadn't taken time towipe the seat or lay toilet paper on it, so you hold "The Stance."To take your mind off your trembling thighs, you reach for whatyou discover to be the empty toilet paper dispenser. In your mind,

you can hear your mother's voice saying, "Honey, if you had tried to

clean the seat, you would have KNOWN there was no toilet paper!

"Your thighs shake more.You remember the tiny tissue that you blew

your nose on yesterday the one that's still in your purse. (Oh yeah,the

purse around your neck, that now, you have to hold up trying not to

strangle yourself at the same time). That would have to do. You crumple

it in the puffiest way possible. It's still smaller than your thumbnail .

Someone pushes your door open because the latch doesn't work.

The door hits your purse,which is hanging around your neck in front

of your chest,and you and your purse topple backward against the tank

of the toilet."Occupied!" you scream, as you reach for the door, dropping

your precious, tiny, crumpled tissue in a puddle on the floor, lose your

footing altogether, and slide down directly onto the TOILET SEAT.

It is wet of course. You bolt up, knowing all too well that it's too late.

Your bare bottom has made contact with every imaginable germ and life

form on the uncovered seat because YOU never laid down toilet paper not

that there was any, even if you had taken time to try. You know that your

mother would be utterly appalled if she knew, because, you're certain her

bare bottom never touched a public toilet seat because, frankly, dear,

"You just don't KNOW what kind of diseases you could get."

By this time, the automatic sensor on the back of the toilet is so

confused that it flushes, propelling a stream of water like a firehose against the inside of the bowl that sprays a fine mist of water that covers your butt and runs down your legs and into your shoes.

The flush somehow sucks everything down with such force that you grabonto the empty toilet paper dispenser for fear of being dragged in too. At this point, you give up. You're soaked by the spewing water andthe wet toilet seat. You're exhausted. You try to wipe with a gumwrapper you found in your pocket and then slink out inconspicuously

to the sinks.

You can't figure out how to operate the faucets with the automaticsensors, so you wipe your hands with spit and a dry paper towel andwalk past the line of women still waiting. You are no longer able to smile

politely to them. A kind soul at the very end of the line points out a piece

of toilet paper trailing from your shoe. Where was that when you NEEDED it??

You yank the paper from your shoe, plunk it in the woman's hand and tell herwarmly, "Here, you just might need this."

As you exit, you spot your hubby, who has long since entered,used, and left the men's restroom . Annoyed, he asks, "What tookyou so long, and why is your purse hanging around your neck?"This is dedicated to women everywhere who deal with a public restrooms (rest??? you've GOT to be kidding!!). It finally explains tothe men what really does take us so long. It also answers their othercommonly asked questions about why women go to the restroom in

pairs. It's so the other gal can hold the door, hang onto your purse and

hand you Kleenex under the door!

This HAD to be written by a woman!

No one else could describe it so accurately!

A Friend Is Like A Good Bra...Hard to FindSupportiveComfortableAlways Lifts You UpNever Lets You Down or Leaves You HangingAnd Is Always Close To Your Heart!!!

What is the definition of frustration?

It's when you put your bra on

backwards and you find out it fits Share this with a friend! I Just Did!Love and hugs, Sandy

[Guest guest]

My 10yo son and 6yo son crave sweets so I let them eat carrots

and grapefruit. As far as I know, those are real foods. Maybe

not the perfect candida diet but better than processed foods. They

love the egg drink, though, and request it specifically. I'm going

to be trying 's 'pumpkin pie' recipe. We had spaghetti

squash spaghetti and meatballs the other night. I know the files on

Bee's website stressed easing into the healthier diet with kids...you

don't want to freak them out. Try to 'wean' him off of what he's

craving. It's rough that your dh is not supportive right now but he

may come around. My kids also like seltzer water with a little

stevia in it--their own soda pop! Hang in there, you're doing great!

Hope this helps,

~Cathe

> My son is begging for crackers, peanut butter and

> fruit. He tries to refuse real food (he did this also

> in the past because all he wants is processed or

> sweet). I made homemade chicken broth and he drank a

> couple of cups of it and I made the delicious soup

> that was posted this week and pureed it up and he had

> a cup last night. Around 9pm he started begging for

> crackers and fruit and I said no. That simple. He is

> taking Cod liver oil, coconut oil, homemade butter and

> chlorophyll without a fuse. I make him drink salt

> water with stevia. He refused the egg drink (I

> absolutely ADORE it, makes me feel out of this

> world!). He will eat fried eggs (about the only thing

> he does fight me over). Yesterday I pureed some

> chicken livers and butter and fed it to him with a

> syringe. I am going to keep homemade broth made and

> just puree everything he needs in it until he will eat

> solid food without a fight. If anyone has any other

> ideas, PLEASE SHARE! Thanks!

>

>

>

>

______________________________________________________________________

______________

> Looking for last minute shopping deals?

> Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

>

[Guest guest]

Cathe,

Thanks for your response! After watching him detox, I

don't wont to impede progress based on emotions and

fear. I really don't think he will allow his self to

starve if he doesn't get what he wants. I want us to

get better and get on with a healthy life. The

pumpkin pie sounds delicious! Keep those great ideas

coming!

--- Cathe Schmidt <cathe616@...> wrote:

> My 10yo son and 6yo son crave sweets so I let them

> eat carrots

> and grapefruit. As far as I know, those are real

> foods. Maybe

> not the perfect candida diet but better than

> processed foods. They

> love the egg drink, though, and request it

> specifically. I'm going

> to be trying 's 'pumpkin pie' recipe. We

> had spaghetti

> squash spaghetti and meatballs the other night. I

> know the files on

> Bee's website stressed easing into the healthier

> diet with kids...you

> don't want to freak them out. Try to 'wean' him off

> of what he's

> craving. It's rough that your dh is not supportive

> right now but he

> may come around. My kids also like seltzer water

> with a little

> stevia in it--their own soda pop! Hang in there,

> you're doing great!

>

> Hope this helps,

> ~Cathe

>

>

>

> > My son is begging for crackers, peanut butter and

> > fruit. He tries to refuse real food (he did this

> also

> > in the past because all he wants is processed or

> > sweet). I made homemade chicken broth and he

> drank a

> > couple of cups of it and I made the delicious soup

> > that was posted this week and pureed it up and he

> had

> > a cup last night. Around 9pm he started begging

> for

> > crackers and fruit and I said no. That simple.

> He is

> > taking Cod liver oil, coconut oil, homemade butter

> and

> > chlorophyll without a fuse. I make him drink salt

> > water with stevia. He refused the egg drink (I

> > absolutely ADORE it, makes me feel out of this

> > world!). He will eat fried eggs (about the only

> thing

> > he does fight me over). Yesterday I pureed some

> > chicken livers and butter and fed it to him with a

> > syringe. I am going to keep homemade broth made

> and

> > just puree everything he needs in it until he will

> eat

> > solid food without a fight. If anyone has any

> other

> > ideas, PLEASE SHARE! Thanks!

> >

> >

> >

> >

>

______________________________________________________________________

> ______________

> > Looking for last minute shopping deals?

> > Find them fast with Search.

>

http://tools.search./newsearch/category.php?category=shopping

> >

>

>

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

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

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

>

> How do you all recover from these incidents? How do you handle the

> power struggle in public? How do you move on and still get out in

> public? Any suggestions, guidance would be appreciated. As my

> husband pointed out--it's hard when it is a support group of two. We

> are so tired of struggling....

Hang in there, . It will get better. You'll learn what he can

handle and what he can't, so you'll be able to avoid situations like

this. Sometimes there is nothing you can do but pick up the kid and

remove yourself from the situation. We all get caught off-guard

sometimes. That's wonderful you are getting a TSS.

Ruth

[Guest guest]

People may have been looking....but will you see them again...probably not...so don't let that bother you. Pat yourself on the back....you didn't give in to him and took him out to the car....Good for you!!! You stuck to your rules and that is the important thing....and maybe the parents were actually thinking...good job Mom!!!

And, you're lucky...you can carry him! LOL! My son is 120 lbs. but now he walks away from us and pouts when he doesn't get his way......

Hang in there....we have good days and bad and you just had a bad moment!

Jan

Jan Rushen

Smile because it is contagious!!!!

From: smaddex <maddexhouse@...>Subject: ( ) Frustration Date: Monday, September 1, 2008, 11:37 AM

Hi all. This is the first time I have posted. But I am so defeatedright now. Just when you think you have made two steps forward, youtake three back. Our son is a bright and intelligent boy, but geezcan he be disagreeable! We were the proud parents of a major meltdown at the Science Centeryesterday, had to carry him out of the building, out to the car. It isjust so mortifying in public you know...the stares, theexplanations. .I just hate it all. It makes me so sad.We set the boundaries-- he pushed, we asked him to chose and thedefiance started. He responds--I am getting it all. We try quietreasoning, we remind him of the limits set, he doesn't care. He getsthis look on his face as if his personality changes right in front ofour eyes. Finally, have what seemed like an eternity of this, I putthe hammer down. Inform him he will get nothing because he can'tfollow the agreed upon guidelines

and the meltdown is in full tiltwhirlie at that point. Wrenching the items out of his hands, I pick him up, offeringapologies on the way out. The one redeeming moment is when I havepulled the car around and a random parent comes to me andcongratulates us for not caving into his fit. I thank him for theencouragement and wish him a good afternoon.How do you all recover from these incidents? How do you handle thepower struggle in public? How do you move on and still get out inpublic? Any suggestions, guidance would be appreciated. As myhusband pointed out--it's hard when it is a support group of two. Weare so tired of struggling.. .. We start TSS on Thursday--took all summer to secure it, do we relatethis to her and the BSC? God, I just don't know what to do.Thanks for listening.

[Guest guest]

– I don’t really have

any advice but just support and to let you know it will get better.  And, I

think you did the right thing.  You didn’t say how old your son is but I

assume he is probably under 8 if you were able to “carry” him out. 

I had to laugh when I read this story as it reminded me of a similar experience

with my son (believe me I couldn’t laugh about it then).  When my son was

6½  we (my older son who was almost 17, Tyler, and I) were driving from Houston to Oklahoma

for Thanksgiving.  We stopped for lunch at a Cracker Barrel restaurant.  For

those of you who are not familiar with this restaurant, you enter into a “general

store” which you have to walk thru to get to the restaurant.  It is full

of toys and candy among other things.  Tyler

started asking for candy while we were waiting for a table and continued to ask

and ask and ask.  I told him that if he ate his lunch he could have some. 

Well, he continued to “fixate” on this for the entire meal and NOT

eat; I continued to remind him he had to eat his lunch in order to get some

candy.  Finally, after 45 minutes of this and my older son and I being almost

done eating, I told him he was not getting any candy as he had eaten nothing. 

Well, as many of you all can imagine, he did not take this well and with an

ear-splitting scream picked up his knife and threw it on the table across from us. 

Thankfully, the couple who had been sitting there had just gotten up and so no

one was at that table (Cracker Barrel has very heavy silverware!)  I was

furious and my poor older son was mortified and even though he continued to eat

looked like he wanted to crawl under the table.  I stood up and calmly leaned

down into Tyler’s

face and with my teeth clenched and my hand holding his arm said, “You

and I are leaving this restaurant now and you will come with me and you will not

yell!”  My tone and the look on my face told him I was not kidding and he

went with me though he kept repeating over and over, “Please don’t

spank me, please don’t spank me, please don’t spank me.”  Of

course, he did get spanked when we got to the car.  Once he calmed down I told

him we were going back in (I had to pay and retrieve my other son) and he was

not going to get candy and he would be good.  Luckily, he was compliant.  And,

he did not get any candy.  At this time, we only had an ADHD diagnosis; we got

an Aspergers diagnosis when he was 15.  Knowing what I know now, I probably

would have handled it differently – for one thing I probably would have

recognized the fact that this restaurant would not be a good choice as the

entrance was a minefield to a child with Aspergers who easily became fixated etc. 

Keep your chin up and know you handled it appropriately and I promise it does

get better.

From:

[mailto: ] On Behalf Of smaddex

Sent: Monday, September 01, 2008

10:37 AM

To:

Subject: ( )

Frustration

Hi all. This is the first time I have posted. But I am

so defeated

right now. Just when you think you have made two steps forward, you

take three back. Our son is a bright and intelligent boy, but geez

can he be disagreeable!

We were the proud parents of a major meltdown at the Science Center

yesterday, had to carry him out of the building, out to the car. It is

just so mortifying in public you know...the stares, the

explanations..I just hate it all. It makes me so sad.

We set the boundaries--he pushed, we asked him to chose and the

defiance started. He responds--I am getting it all. We try quiet

reasoning, we remind him of the limits set, he doesn't care. He gets

this look on his face as if his personality changes right in front of

our eyes. Finally, have what seemed like an eternity of this, I put

the hammer down. Inform him he will get nothing because he can't

follow the agreed upon guidelines and the meltdown is in full tilt

whirlie at that point.

Wrenching the items out of his hands, I pick him up, offering

apologies on the way out. The one redeeming moment is when I have

pulled the car around and a random parent comes to me and

congratulates us for not caving into his fit. I thank him for the

encouragement and wish him a good afternoon.

How do you all recover from these incidents? How do you handle the

power struggle in public? How do you move on and still get out in

public? Any suggestions, guidance would be appreciated. As my

husband pointed out--it's hard when it is a support group of two. We

are so tired of struggling....

We start TSS on Thursday--took all summer to secure it, do we relate

this to her and the BSC?

God, I just don't know what to do.

Thanks for listening.

[Guest guest]

Hi Shellley,

You did the right thing!!! Don't beat yourself up over it. I have done the same thiing as you in public, dragging my son out while he is screaming at the top of his lungs. Just imagine how bad it would have been if you had given in to him and the next time a similar situation happens, then it would be even worse. Your son would think "well I got what I wanted last time so all I have to do is scream and carry on and I will get what I want."

Yes, you need to tell your team members about what happened as they will reinforce you. I take it you also have a BSC? If so, they can make it one of the goals to work with him on 1. Not getting what he wants when he wants it.

2. Respecting his parents.

3. Teaching him to accept the responsiblity for the choices he makes and the consequences.

We just went through a traumatizing event this past Wed. (the 1st day of school) and he melted down completely at bedtime. By Thurs afternoon, I still hadn't fully recovered from it. You learn to just take it one situation at a time and you do recover.

Sue

From: <cindyelgamal@...>Subject: RE: ( ) Frustration Date: Tuesday, September 2, 2008, 12:57 AM

– I don’t really have any advice but just support and to let you know it will get better. And, I think you did the right thing. You didn’t say how old your son is but I assume he is probably under 8 if you were able to “carry” him out. I had to laugh when I read this story as it reminded me of a similar experience with my son (believe me I couldn’t laugh about it then). When my son was 6½ we (my older son who was almost 17, Tyler, and I) were driving from Houston to Oklahoma for Thanksgiving. We stopped for lunch at a Cracker Barrel restaurant. For those of you who are not familiar with this restaurant, you enter into a “general store” which you have to walk thru to get to the restaurant. It is full of toys and candy among other things. Tyler started asking for

candy while we were waiting for a table and continued to ask and ask and ask. I told him that if he ate his lunch he could have some. Well, he continued to “fixate” on this for the entire meal and NOT eat; I continued to remind him he had to eat his lunch in order to get some candy. Finally, after 45 minutes of this and my older son and I being almost done eating, I told him he was not getting any candy as he had eaten nothing. Well, as many of you all can imagine, he did not take this well and with an ear-splitting scream picked up his knife and threw it on the table across from us. Thankfully, the couple who had been sitting there had just gotten up and so no one was at that table (Cracker Barrel has very heavy silverware!) I was furious and my poor older son was mortified and even though he continued to eat looked like he wanted to crawl under the table. I stood up and calmly leaned down into Tyler ’s

face and with my teeth clenched and my hand holding his arm said, “You and I are leaving this restaurant now and you will come with me and you will not yell!” My tone and the look on my face told him I was not kidding and he went with me though he kept repeating over and over, “Please don’t spank me, please don’t spank me, please don’t spank me.” Of course, he did get spanked when we got to the car. Once he calmed down I told him we were going back in (I had to pay and retrieve my other son) and he was not going to get candy and he would be good. Luckily, he was compliant. And, he did not get any candy. At this time, we only had an ADHD diagnosis; we got an Aspergers diagnosis when he was 15. Knowing what I know now, I probably would have handled it differently – for one thing I probably would have recognized the fact that this restaurant would not be a good choice as the entrance was a minefield

to a child with Aspergers who easily became fixated etc. Keep your chin up and know you handled it appropriately and I promise it does get better.

From: [mailto:AspergersSu pport@group s.com] On Behalf Of smaddexSent: Monday, September 01, 2008 10:37 AM Subject: ( ) Frustration

Hi all. This is the first time I have posted. But I am so defeatedright now. Just when you think you have made two steps forward, youtake three back. Our son is a bright and intelligent boy, but geezcan he be disagreeable! We were the proud parents of a major meltdown at the Science Centeryesterday, had to carry him out of the building, out to the car. It isjust so mortifying in public you know...the stares, theexplanations. .I just hate it all. It makes me so sad.We set the boundaries-- he pushed, we asked him to chose and thedefiance started. He responds--I am getting it all. We try quietreasoning, we remind him of the limits set, he doesn't care. He getsthis look on his face as if his personality changes right in front ofour eyes. Finally, have what seemed like an eternity of this, I putthe hammer down. Inform him he will

get nothing because he can'tfollow the agreed upon guidelines and the meltdown is in full tiltwhirlie at that point. Wrenching the items out of his hands, I pick him up, offeringapologies on the way out. The one redeeming moment is when I havepulled the car around and a random parent comes to me andcongratulates us for not caving into his fit. I thank him for theencouragement and wish him a good afternoon.How do you all recover from these incidents? How do you handle thepower struggle in public? How do you move on and still get out inpublic? Any suggestions, guidance would be appreciated. As myhusband pointed out--it's hard when it is a support group of two. Weare so tired of struggling.. .. We start TSS on Thursday--took all summer to secure it, do we relatethis to her and the BSC? God, I just don't know what to do.Thanks for listening.

[Guest guest]

Hi ,

You have come to the right place for empathy...we've all been there.

Take a deep breath and move ahead You can only do THIS very moment.

I learned a lot from the book, How to Talk so Kids Will Listen, and

Listen so Kids will

Talk " ,http://www.amazon.com/s/ref=nb_ss_gw?url=search-alias%3Daps & field-keywords\

=How+to+talk+so+kids+will+listen & x=11 & y=10

Tiny URL... http://tiny.cc/h8dsB

It also helps me when I remember that even the deaf and mute

successfully raise children

I established a little type of sign language. That helped.

Another option would be to say, " Hammers are so wonderful, but we need

to use them safely. " (Now Mom is holding the hammer)

" Would you like me to help you learn to do that, or would you rather

go have lunch? "

My experience showed me I had to keep an eye on the clock. My little

guy had to have a nutritious snack every 2 hours or he would have a

major meltdown...think of the humming birds sipping their nectar all

day... Water was a factor too.

Hang in there.

M.

>

> Hi all. This is the first time I have posted. But I am so defeated

> right now. Just when you think you have made two steps forward, you

> take three back. Our son is a bright and intelligent boy, but geez

> can he be disagreeable!

>

> We were the proud parents of a major meltdown at the Science Center

> yesterday, had to carry him out of the building, out to the car. It is

> just so mortifying in public you know...the stares, the

> explanations..I just hate it all. It makes me so sad.

>

> We set the boundaries--he pushed, we asked him to chose and the

> defiance started. He responds--I am getting it all. We try quiet

> reasoning, we remind him of the limits set, he doesn't care. He gets

> this look on his face as if his personality changes right in front of

> our eyes. Finally, have what seemed like an eternity of this, I put

> the hammer down. Inform him he will get nothing because he can't

> follow the agreed upon guidelines and the meltdown is in full tilt

> whirlie at that point.

>

> Wrenching the items out of his hands, I pick him up, offering

> apologies on the way out. The one redeeming moment is when I have

> pulled the car around and a random parent comes to me and

> congratulates us for not caving into his fit. I thank him for the

> encouragement and wish him a good afternoon.

>

> How do you all recover from these incidents? How do you handle the

> power struggle in public? How do you move on and still get out in

> public? Any suggestions, guidance would be appreciated. As my

> husband pointed out--it's hard when it is a support group of two. We

> are so tired of struggling....

>

> We start TSS on Thursday--took all summer to secure it, do we relate

> this to her and the BSC?

>

> God, I just don't know what to do.

>

> Thanks for listening.

>

>

>

[Guest guest]

Everyone,

Thank you-thank you-thank you. I really do appreciate your insights

and support. Deep inside, I am confident that I made the right

decision. Yet with some social anxiety issues of my own, it is really

hard to keep perspective when these outburst happen in public.

For those who are wondering, he is 8 years old in 3rd grade and is

lanky but strong. I began to suspect that he was ASD when he was 3.

He would play " parking lot " where he would take every matchbox car in

the house and line them up in rows. If they were disturbed, he would

" lose it. " He has always had a fascination with maps/globes and enjoys

just looking at them and making up stories. School has been a

challenge--it is a great district if your kid falls on the curve, but

is difficult to navigate when you kid is different. My favorite

event--as I digress--was in first grade, the teacher claimed that he

" got by " on prior knowledge--you know, because a 6/7 y.o. has the

conscious ability to slack his way through 1st grade. A colleague of

mine pointed out something that I think about every so often--We

taught him more at home in the 2.5 hours after work than she did all

day long--what does that say about one of the area's top school

districts? Troubling isn't it?

Looking at this in retrospect, when we have these public meltdowns,

the worse part is the ripple effect through the family unit. I think

in part it is caused by my own disappointment and that of my husband's

when things go horridly awry when our only intention was to create a

" special family time. " I tell our boy often, not to set up

expectations that things will go in a certain way and yet, I have a

tendency to do the same thing-- " write internal scripts " if you will.

Another interesting aspect to this event and as with those in the

past has been the child's uncanny ability to move from hysterical to

calm in a matter of a couple moments. Some call it resilience, but

for me it has always been and continues to be somewhat unsettling. Do

others experience this Jekyll/Hyde swing with their kids?

, you mention food, and this is something that I must address

more often. I don't get hungry like my husband and son do and so it

is not front of mind to keep snacks etc at hand during outings. As

far as diet goes, I am sure everyone suffers from the finicky eater

issues associated with ASD. One thing that we are certain of is the

need to get ours off of processed sugar. We have already moved to

hormone free meat, which has reverse some early onset puberty (mainly

b.o. and a little acne). So I know that diet definitely has an

impact. I am not ready to go GFCF as I want to try this first--along

with food dyes. My father in law is celiac, so this may be another

avenue to proceed at a later date, but we need to do this slowly and

measured.

My question for the group is how do we go about eliminating processed

sugar (High fructose corn syrup, splenda, for example) from the diet

in a way that does not throw his sense of order off? I would

appreciate any suggestions in this area..

Again, everyone, thank you so much for your support and suggestions.

I appreciate you listening...

Best

[Guest guest]

>

> Everyone,

>

> Thank you-thank you-thank you. I really do appreciate your insights

> and support. Deep inside, I am confident that I made the right

> decision. Yet with some social anxiety issues of my own, it is

really

> hard to keep perspective when these outburst happen in public.

>

> For those who are wondering, he is 8 years old in 3rd grade and is

> lanky but strong. I began to suspect that he was ASD when he was 3.

> He would play " parking lot " where he would take every matchbox car

in

> the house and line them up in rows. If they were disturbed, he

would

> " lose it. " He has always had a fascination with maps/globes and

enjoys

> just looking at them and making up stories. School has been a

> challenge--it is a great district if your kid falls on the curve,

but

> is difficult to navigate when you kid is different. My favorite

> event--as I digress--was in first grade, the teacher claimed that he

> " got by " on prior knowledge--you know, because a 6/7 y.o. has the

> conscious ability to slack his way through 1st grade. A colleague

of

> mine pointed out something that I think about every so often--We

> taught him more at home in the 2.5 hours after work than she did all

> day long--what does that say about one of the area's top school

> districts? Troubling isn't it?

>

> Looking at this in retrospect, when we have these public meltdowns,

> the worse part is the ripple effect through the family unit. I think

> in part it is caused by my own disappointment and that of my

husband's

> when things go horridly awry when our only intention was to create a

> " special family time. " I tell our boy often, not to set up

> expectations that things will go in a certain way and yet, I have a

> tendency to do the same thing-- " write internal scripts " if you

will.

> Another interesting aspect to this event and as with those in the

> past has been the child's uncanny ability to move from hysterical to

> calm in a matter of a couple moments. Some call it resilience, but

> for me it has always been and continues to be somewhat unsettling.

Do

> others experience this Jekyll/Hyde swing with their kids?

>

> , you mention food, and this is something that I must address

> more often. I don't get hungry like my husband and son do and so it

> is not front of mind to keep snacks etc at hand during outings. As

> far as diet goes, I am sure everyone suffers from the finicky eater

> issues associated with ASD. One thing that we are certain of is the

> need to get ours off of processed sugar. We have already moved to

> hormone free meat, which has reverse some early onset puberty

(mainly

> b.o. and a little acne). So I know that diet definitely has an

> impact. I am not ready to go GFCF as I want to try this first--

along

> with food dyes. My father in law is celiac, so this may be another

> avenue to proceed at a later date, but we need to do this slowly and

> measured.

>

> My question for the group is how do we go about eliminating

processed

> sugar (High fructose corn syrup, splenda, for example) from the diet

> in a way that does not throw his sense of order off? I would

> appreciate any suggestions in this area..

>

> Again, everyone, thank you so much for your support and

suggestions.

> I appreciate you listening...

>

> Best

>

>

>

hi. Just reading this reminds me of my own 7 year old son. He has

been diagnosed with aspects of ADHD,Aspergers and dyspraxia but if

you ask me he has the full blown thing. He is very jekyl and hyde.

The trouble is my emotions dont switch as quickly as his and i remain

upset inside after a blow out longer than he does. Food doesn't seem

to effect him but I am getting worried about his diet because it is

getting more and more restricted and I worry he can't be getting all

the nutrients he needs. Good luck i know how you feel. Does you son

get violent with you? If so how do you deal with it?

[Guest guest]

Oh ...

We handle it just the way you do. Sadly.

We try to teach him/them.........become embarrassed and humiliated and, you said it perfectly,,,,,,,SAD.

It's a fricken roller coaster......

Don't know what to say to you,,,,other than,,,,,keep it up. It has gotten better for us over the years...........

Hugs to you.

Robin

From: smaddex <maddexhouse@...>Subject: ( ) Frustration Date: Monday, September 1, 2008, 10:37 AM

Hi all. This is the first time I have posted. But I am so defeatedright now. Just when you think you have made two steps forward, youtake three back. Our son is a bright and intelligent boy, but geezcan he be disagreeable! We were the proud parents of a major meltdown at the Science Centeryesterday, had to carry him out of the building, out to the car. It isjust so mortifying in public you know...the stares, theexplanations. .I just hate it all. It makes me so sad.We set the boundaries-- he pushed, we asked him to chose and thedefiance started. He responds--I am getting it all. We try quietreasoning, we remind him of the limits set, he doesn't care. He getsthis look on his face as if his personality changes right in front ofour eyes. Finally, have what seemed like an eternity of this, I putthe hammer down. Inform him he will get nothing because he can'tfollow the agreed upon guidelines

and the meltdown is in full tiltwhirlie at that point. Wrenching the items out of his hands, I pick him up, offeringapologies on the way out. The one redeeming moment is when I havepulled the car around and a random parent comes to me andcongratulates us for not caving into his fit. I thank him for theencouragement and wish him a good afternoon.How do you all recover from these incidents? How do you handle thepower struggle in public? How do you move on and still get out inpublic? Any suggestions, guidance would be appreciated. As myhusband pointed out--it's hard when it is a support group of two. Weare so tired of struggling.. .. We start TSS on Thursday--took all summer to secure it, do we relatethis to her and the BSC? God, I just don't know what to do.Thanks for listening.

[Guest guest]

My son is turning 12 and although it has gotten a little better. We

also went through the same thing. And it always seems to happen more

when your away from home in a public area. Back then I thought I was

all alone and my child seem like the only one that behaved this way.

Before entering any store, I don't care if it's the gas station we

let him know what we are there to do and if we are going to allow him

to buy anything. We have to make it very clear if we are letting him

get something what he can and can not get. If not, it's an argument

and he wants to win. He still tries to push, but I remind him that

he will not beable to go with me again.

It's really hard and it really takes a toll on you. I feel your

frustration.

> >

> > Everyone,

> >

> > Thank you-thank you-thank you. I really do appreciate your

insights

> > and support. Deep inside, I am confident that I made the right

> > decision. Yet with some social anxiety issues of my own, it is

> really

> > hard to keep perspective when these outburst happen in public.

> >

> > For those who are wondering, he is 8 years old in 3rd grade and is

> > lanky but strong. I began to suspect that he was ASD when he was

3.

> > He would play " parking lot " where he would take every matchbox

car

> in

> > the house and line them up in rows. If they were disturbed, he

> would

> > " lose it. " He has always had a fascination with maps/globes and

> enjoys

> > just looking at them and making up stories. School has been a

> > challenge--it is a great district if your kid falls on the curve,

> but

> > is difficult to navigate when you kid is different. My favorite

> > event--as I digress--was in first grade, the teacher claimed that

he

> > " got by " on prior knowledge--you know, because a 6/7 y.o. has the

> > conscious ability to slack his way through 1st grade. A

colleague

> of

> > mine pointed out something that I think about every so often--We

> > taught him more at home in the 2.5 hours after work than she did

all

> > day long--what does that say about one of the area's top school

> > districts? Troubling isn't it?

> >

> > Looking at this in retrospect, when we have these public

meltdowns,

> > the worse part is the ripple effect through the family unit. I

think

> > in part it is caused by my own disappointment and that of my

> husband's

> > when things go horridly awry when our only intention was to

create a

> > " special family time. " I tell our boy often, not to set up

> > expectations that things will go in a certain way and yet, I have

a

> > tendency to do the same thing-- " write internal scripts " if you

> will.

> > Another interesting aspect to this event and as with those in the

> > past has been the child's uncanny ability to move from hysterical

to

> > calm in a matter of a couple moments. Some call it resilience,

but

> > for me it has always been and continues to be somewhat

unsettling.

> Do

> > others experience this Jekyll/Hyde swing with their kids?

> >

> > , you mention food, and this is something that I must

address

> > more often. I don't get hungry like my husband and son do and so

it

> > is not front of mind to keep snacks etc at hand during outings.

As

> > far as diet goes, I am sure everyone suffers from the finicky

eater

> > issues associated with ASD. One thing that we are certain of is

the

> > need to get ours off of processed sugar. We have already moved to

> > hormone free meat, which has reverse some early onset puberty

> (mainly

> > b.o. and a little acne). So I know that diet definitely has an

> > impact. I am not ready to go GFCF as I want to try this first--

> along

> > with food dyes. My father in law is celiac, so this may be another

> > avenue to proceed at a later date, but we need to do this slowly

and

> > measured.

> >

> > My question for the group is how do we go about eliminating

> processed

> > sugar (High fructose corn syrup, splenda, for example) from the

diet

> > in a way that does not throw his sense of order off? I would

> > appreciate any suggestions in this area..

> >

> > Again, everyone, thank you so much for your support and

> suggestions.

> > I appreciate you listening...

> >

> > Best

> >

> >

> >

> hi. Just reading this reminds me of my own 7 year old son. He has

> been diagnosed with aspects of ADHD,Aspergers and dyspraxia but if

> you ask me he has the full blown thing. He is very jekyl and hyde.

> The trouble is my emotions dont switch as quickly as his and i

remain

> upset inside after a blow out longer than he does. Food doesn't

seem

> to effect him but I am getting worried about his diet because it is

> getting more and more restricted and I worry he can't be getting

all

> the nutrients he needs. Good luck i know how you feel. Does you son

> get violent with you? If so how do you deal with it?

>

[Guest guest]

> My question for the group is how do we go about eliminating processed

> sugar (High fructose corn syrup, splenda, for example) from the diet

> in a way that does not throw his sense of order off? I would

> appreciate any suggestions in this area..

I commend you for tackling your son's issues in a positive way, but my

suggestion is to get some testing done so you know for sure what he

has problems with rather than guessing. Not that getting rid of

processed sugar can ever be bad, but concerning the big picture

regarding diet. --Ruth

[Guest guest]

Yes...I have always said my son was Jekly and Hyde....it is amazing! But with the calm comes the most loving child ...sweet, kind and hugging and so sorry. I am not sure what cause this but it does happen. It is like they are overtaken by stresses ...overloaded and explode and then afterwards the calm settles in .....like it was an electric over loaded circuit.....and maybe that is what it is and the brain just can function and explodes with electrodes ...who knows but my son is exactly that way.

Jan Rushen

Smile because it is contagious!!!!

From: valeriemorrison76 <valeriemorrison76@...>Subject: ( ) Re: Frustration Date: Wednesday, September 3, 2008, 7:02 AM

>> Everyone,> > Thank you-thank you-thank you. I really do appreciate your insights> and support. Deep inside, I am confident that I made the right> decision. Yet with some social anxiety issues of my own, it is really> hard to keep perspective when these outburst happen in public. > > For those who are wondering, he is 8 years old in 3rd grade and is> lanky but strong. I began to suspect that he was ASD when he was 3. > He would play "parking lot" where he would take every matchbox car in> the house and line them up in rows. If they were disturbed, he would> "lose it." He has always had a fascination with maps/globes and enjoys> just looking at them and making up

stories. School has been a> challenge--it is a great district if your kid falls on the curve, but> is difficult to navigate when you kid is different. My favorite> event--as I digress--was in first grade, the teacher claimed that he> "got by" on prior knowledge--you know, because a 6/7 y.o. has the> conscious ability to slack his way through 1st grade. A colleague of> mine pointed out something that I think about every so often--We> taught him more at home in the 2.5 hours after work than she did all> day long--what does that say about one of the area's top school> districts? Troubling isn't it? > > Looking at this in retrospect, when we have these public meltdowns,> the worse part is the ripple effect through the family unit. I think> in part it is caused by my own disappointment and that of my husband's> when things go horridly awry when our

only intention was to create a> "special family time." I tell our boy often, not to set up> expectations that things will go in a certain way and yet, I have a> tendency to do the same thing--"write internal scripts" if you will. > Another interesting aspect to this event and as with those in the> past has been the child's uncanny ability to move from hysterical to> calm in a matter of a couple moments. Some call it resilience, but> for me it has always been and continues to be somewhat unsettling. Do> others experience this Jekyll/Hyde swing with their kids? > > , you mention food, and this is something that I must address> more often. I don't get hungry like my husband and son do and so it> is not front of mind to keep snacks etc at hand during outings. As> far as diet goes, I am sure everyone suffers from the finicky eater> issues

associated with ASD. One thing that we are certain of is the> need to get ours off of processed sugar. We have already moved to> hormone free meat, which has reverse some early onset puberty (mainly> b.o. and a little acne). So I know that diet definitely has an> impact. I am not ready to go GFCF as I want to try this first--along> with food dyes. My father in law is celiac, so this may be another> avenue to proceed at a later date, but we need to do this slowly and> measured. > > My question for the group is how do we go about eliminating processed> sugar (High fructose corn syrup, splenda, for example) from the diet> in a way that does not throw his sense of order off? I would> appreciate any suggestions in this area..> > Again, everyone, thank you so much for your support and suggestions. > I appreciate you listening...>

> Best> > >hi. Just reading this reminds me of my own 7 year old son. He has been diagnosed with aspects of ADHD,Aspergers and dyspraxia but if you ask me he has the full blown thing. He is very jekyl and hyde. The trouble is my emotions dont switch as quickly as his and i remain upset inside after a blow out longer than he does. Food doesn't seem to effect him but I am getting worried about his diet because it is getting more and more restricted and I worry he can't be getting all the nutrients he needs. Good luck i know how you feel. Does you son get violent with you? If so how do you deal with it?