RE: Sick and tired of this miserable existence - might be long...

[Guest guest]

Hmm, well, hmm....I don't have an terribly wise words to offer. We

just do what we have to do. If you were here I'd invite you over for

coffee and movie reruns. My cousin has graduated from HS now

and is attending a Jr. college part time. When was Jacquie's

age, and even Chris's age, things tended to operate around his needs,

and his sister's (she's got some 'issues' also). I don't have a

life either so I can't tell you you can have it all, but I do have a

couple of good friends, and we have this list, and I have my family.

Someday's it gets mighty old and I get mighty fed up with parts of

it, but it's not forever.

This too shall pass. Eventually.

Hang in there.

[Guest guest]

Thanks -

But you know what? I don't even WANT it all....I just want a little

something, on MY terms..why is that so terribly hard to do?

Penny

>>>>>

I don't have a

life either so I can't tell you you can have it all,

<<<<<<<<

[Guest guest]

Penny,

I know that feeling too well. Greggory has sent me there too many

times to count. Some days are great and I forget for awhile that my

life is not normal and then we go somehwre and I am stuck in the

middle of a place I never wanted to be. I dont know what to say

except I am sure you didnt look like an idiot. We just feel like we

do.

Jacquie H

> Jacqui's last day of school was today. oh fun. This is the 3rd day

in a row

> that she has been overly frustrated after school about everything

(that's

> right, she saves it for me).

>

> Last week we were invited to an " end of school " swim party. No

biggy, just

> a few girls from school, and some little ones. I said OK, and

Jacqui seemed

> fairly anxious to go. Now in the back of my mind, I'm pretty sure

that

> Jacqui was invited for the sake of one of the little girls. Long

story

> short, Mom has child jacqui's age PLUS a foster child Jacqui's age,

and bio

> daughter needs her own friends, so Jacqui would be the " fill in "

friend for

> the foster child. Of course, this is all done in a very nice,

suburban

> yuppie sort of way. (Ok, I'm pissed.....)

>

> Anyhow, at this very moment I am MAD, ANGRY, FRUSTRATED, SAD,

GUILTY, and

> throw in any other emotion you want. I am SO mad at Jacqui!!! For

what? For

> being Autistic. For making ME live this autistic life.

>

> We go to the party. Of course, I immediately feel out of place,

but I

> handle it ok. Jacqui gets in the pool, but PLAYS WITH NO ONE. She

didn't

> play with ANYONE the ENTIRE time we were there!!! All of the other

kids

> were playing, and within 15 minutes she was " I want to go!! " " When

can we

> go " on and on. The other 4 woman were happily carrying on

conversations and

> I had to deal with Jacqui. Then, when I showed no signs of

leaving, she

> hangs on my leg (I was sitting on the edge of the pool)...She

literally

> HANGS there. I try to ignore her, but finally I say " We have to go.

> Jacqui's done " . So my friend trys to save the moment by saying it

was time

> to eat. Jacqui goes for this, but I STILL have to be on her. I

can't

> mingle, I can't talk. I have to provide the food, make sure Jacqui

doesn't

> handle it all, make sure she doesn't eat 10 brownies...etc.etc. -

When she

> was done eating, guess what.. she wanted to go. Does she say

goodbye to

> anyone? No. And of course, I just feel and probably look like a

complete

> idiot.

>

> You all know what I mean....and I'm so completely tired of it.

COMPLETELY.

> One woman at school this morning commented to me that Jacqui didn't

seem

> autistic. Yeah, I know. You can't SEE it, until it slaps you

upside the

> head.

>

> What was I thinking? I can't go anywhere in public, with

strangers. My

> child is NEVER going to play with more than one child at a

time...I'm never

> going to have a social existence.

>

> Why does my life usually seem like it's rolling along well and that

Jacqui

> is doing well? BECAUSE WE LIVE AN AUTISTIC'S LIFE!! Our lives

revolve

> around HER. Period.

>

> I'm pissed. I should not be angry at her, but I am. I'm one step

short of

> " Why can't you just go play with your friends " .

>

> I know why. and I can't change it. ever.

>

> Oh, BTW...Jacqui's perfectly happy now that we're home.

>

> Stuck in Autism Hell,

>

> Penny

> " Reality is always controlled by the people who are most insane "

Dogbert -

> 6/14/98

[Guest guest]

Penny,

You need to get something that is just yours. You need to tell your dh that

you have to have at least ONE thing in your life that is just yours and is

not touched by autism. You decide what that is, preferably something that

gets you out of the house and around other people with similar interests.

How about you take a class at a local college, or a class to teach you a new

craft you've always wanted to try? Honestly Penny, I know what it is like

to have your life ruled by autism, and you really, really need to get away

from it sometimes. Join the gym, or go to church by yourself. If you have

trouble socially, like me , than join some really small group at first,

like a couple of ladies walking around the park or something. I'm just

throwing out ideas. You NEED to have contact with other adults without

Jacqui around. You NEED to make time for this. It has to be a priority or

you will continue to feel angry at Jacqui(which I know you don't want).

So, there's my 2 cents.

Amy H--in Michigan

Kepler 5 ASD and Bethany 6 1/2 NT

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

>>You need to get something that is just yours. You need to tell your dh

that

you have to have at least ONE thing in your life that is just yours and is

not touched by autism.

Now THAT is good advice. For all of us.

-Sara.

who hasn't any idea what her one thing might be, but knows she needs one.

[Guest guest]

>> Anyhow, at this very moment I am MAD, ANGRY, FRUSTRATED, SAD,

GUILTY, and throw in any other emotion you want. I am SO mad at

Jacqui!!! For what? For being Autistic. For making ME live this

autistic life. >>

Yeah...I get this feeling sometimes, too. Autism throws everyone

around it into this Netherworld...how can anything make sense when

you are constantly dealing with behaviors that DON'T make

sense...always saying/thinking " Why did you do that? " ...for me, what

helps is working on understanding how it works...there ARE whys, and

if I know the reason (or can make one up), I feel less like life is

out of control. It's why I'm such an info junkie---I need to know so

I can survive. It's that constant craziness...I have to make it make

sense.

I've thought for a long time that what professionals need to do is

not to teach us how to deal with autism (well...that, too...but not

JUST that)...someone should to be teaching parents how to deal with

the stress of living with a person with autism. How to do this and

maintain some level of sanity...sympathetic overload is contagious,

and when you are around it all the time, you live it just as much as

they do. It's like living in a war zone; you can never relax because

you don't know what will happen next.

> The other 4 woman were happily carrying on conversations and

> I had to deal with Jacqui. >

This is one of the toughest things for me...seeing other moms go

about the business of " watching " their NT kids while I *chase*

. I remember in our old neighborhood some of the mothers were

sitting in chairs out on the front lawn on night and invited me to

sit and talk with them... " Can't you just watch him from here? " ...they

honestly couldn't see how a five year old could need that much

supervision.

> You all know what I mean....and I'm so completely tired of it.

COMPLETELY.>

Yeah. I get that way, too. It just comes and goes...don't have an

answer for that one. I just try to distract myself and ride it out.

>> I know why. and I can't change it. ever. >>

I think though, that it will get better for you and Jacqui, Penny.

Have you ever read " Exiting Nirvana " ? It is about a woman with

autism---a lot more severe than Jacqui, from what I can tell, but

still doing well---she works outside the home, helps with meals, and

sells her artwork...it is a very good picture of life with an older

autistic child, I think. Gave me hope...even though it is quite

frank about the challenges.

> Oh, BTW...Jacqui's perfectly happy now that we're home. >

Well...yeah.

> Stuck in Autism Hell,>

Hmmmm...sorry. Not much help, huh?

Raena

[Guest guest]

Ah, Penny. been there, done that. Your telling of the birthday party

could've been mine. <sigh> I've felt that anger and resentment and rage

and the desire to shake the autism out of my kid, too.

You asked for a 'solution'. Don't have one; all the alternatives to

continuing to try all seem to involve never leaving the house again.

I'm going to see Tony Attwood and Carol Gray in October, assuming all goes

smoothly...hopefully I will have some pointers that I can share with you

then.

As much as we love our kids, treasure them as they are, and wouldn't dream

of changing them...sometimes this autism life JUST SUCKS.

Jacquie

[Guest guest]

Thanks for all of your replies so far. and yes, they all helped.

If I DIDN'T know what the issues were, then I think it would make sense for

me to be trying to figure them out. But KNOWING what's happening and KNOWING

that I can't change it is SOOOOOOOO frustrating...

is right...this too shall pass.

*sigh*

BTW, I have started exercising again..and I've made it pretty clear that it

IS my time. I WILL get up and go for a walk whenever. Period. I WILL swim

and NOT worry about what Jacqui is doing. I WILL go for a bike ride. I will

go upstairs EARLY and workout if I feel like it. I WILL NOT plan ahead for

these things.

Of course, that said...my dh won't be home until 6:30 tonite.....

*sigh* again.

Penny

[Guest guest]

((((((((((((((PENNY)))))))))))))

This is another one of those cases where I think it

must be harder having a high functioning child.

Although I can definetely relate with what happened at

this party. That is how it is for me, too. But your

expectations are different for Jacqui and so are her

peers' and their parents'. It has got to be very

frustrating to have a child be so high functioning yet

so autistic. I'm sorry!

Tamara

--- Penny wrote:

> Jacqui's last day of school was today. oh fun. This

> is the 3rd day in a row

> that she has been overly frustrated after school

> about everything (that's

> right, she saves it for me).

>

> Last week we were invited to an " end of school " swim

> party. No biggy, just

> a few girls from school, and some little ones. I

> said OK, and Jacqui seemed

> fairly anxious to go. Now in the back of my mind,

> I'm pretty sure that

> Jacqui was invited for the sake of one of the little

> girls. Long story

> short, Mom has child jacqui's age PLUS a foster

> child Jacqui's age, and bio

> daughter needs her own friends, so Jacqui would be

> the " fill in " friend for

> the foster child. Of course, this is all done in a

> very nice, suburban

> yuppie sort of way. (Ok, I'm pissed.....)

>

> Anyhow, at this very moment I am MAD, ANGRY,

> FRUSTRATED, SAD, GUILTY, and

> throw in any other emotion you want. I am SO mad at

> Jacqui!!! For what? For

> being Autistic. For making ME live this autistic

> life.

>

> We go to the party. Of course, I immediately feel

> out of place, but I

> handle it ok. Jacqui gets in the pool, but PLAYS

> WITH NO ONE. She didn't

> play with ANYONE the ENTIRE time we were there!!!

> All of the other kids

> were playing, and within 15 minutes she was " I want

> to go!! " " When can we

> go " on and on. The other 4 woman were happily

> carrying on conversations and

> I had to deal with Jacqui. Then, when I showed no

> signs of leaving, she

> hangs on my leg (I was sitting on the edge of the

> pool)...She literally

> HANGS there. I try to ignore her, but finally I say

> " We have to go.

> Jacqui's done " . So my friend trys to save the

> moment by saying it was time

> to eat. Jacqui goes for this, but I STILL have to

> be on her. I can't

> mingle, I can't talk. I have to provide the food,

> make sure Jacqui doesn't

> handle it all, make sure she doesn't eat 10

> brownies...etc.etc. - When she

> was done eating, guess what.. she wanted to go.

> Does she say goodbye to

> anyone? No. And of course, I just feel and probably

> look like a complete

> idiot.

>

> You all know what I mean....and I'm so completely

> tired of it. COMPLETELY.

> One woman at school this morning commented to me

> that Jacqui didn't seem

> autistic. Yeah, I know. You can't SEE it, until it

> slaps you upside the

> head.

>

> What was I thinking? I can't go anywhere in public,

> with strangers. My

> child is NEVER going to play with more than one

> child at a time...I'm never

> going to have a social existence.

>

> Why does my life usually seem like it's rolling

> along well and that Jacqui

> is doing well? BECAUSE WE LIVE AN AUTISTIC'S LIFE!!

> Our lives revolve

> around HER. Period.

>

> I'm pissed. I should not be angry at her, but I am.

> I'm one step short of

> " Why can't you just go play with your friends " .

>

> I know why. and I can't change it. ever.

>

> Oh, BTW...Jacqui's perfectly happy now that we're

> home.

>

> Stuck in Autism Hell,

>

> Penny

> " Reality is always controlled by the people who are

> most insane " Dogbert -

> 6/14/98

>

>

=====

Tamara

mom to :

Ebony, 4 yrs -- asd, ADHD, bi-polar

, 1 year

wife to:

Terry, love of my life

__________________________________________________

[Guest guest]

ahhh Penny. Sorry you are so down. But I can see what your saying.

Mark doesn't have an offical dx but I am almost sure he has autism.

But at times I wonder because he is doing so good. Then I go in

public with him or a new situation, or a family get together and then

I know. I hate big gatherings now because I'm never a part of them

anymore. They suck and I can walk around just me and Mark anytime,

why should I go to a gathering like that to do the same thing. And

at the same time what so much to mingle. I understand Penny, it's

no fun!

((((((Penny)))))))

Tina W.

[Guest guest]

(((Penny)))

I wish I could say something uplifting but I'm feeling pretty crappy myself.

Sissi

[Guest guest]

family gatherings..... hmmmmm.... I HATE them! Everyone sits around having a

great time, while Tim and I spend the WHOLE time chasing, calming, feeding, etc

while no one lifts one finger to say hey, why don't you eat while I do that. Do

you know last weekend everyone ate without me (we were out of town without Tim)

and when they were all done and I was STILL trying to get him settled I ended up

eating at the dinner table by myself? I thought how selfish is everyone. I'm so

tired of the " I just don't think he's autistic " , " maybe they mis diagnosed him " ,

" it's just a phase " . This week he has been super, super good and it's times

like that that I think gosh is there really anything wrong with him, but I

should just hit myself in the head, because 1 good week means 4 bad, bad weeks.

We finally told the family, if you can't come here then don't be upset if we

decline the invitation. Is it denial?

Merritt

2-Star Consultant

Southern Living At HOME

www.southernlivingathome.com/heathermerritt

Re: Sick and tired of this miserable existence -

might be long...

ahhh Penny. Sorry you are so down. But I can see what your saying.

Mark doesn't have an offical dx but I am almost sure he has autism.

But at times I wonder because he is doing so good. Then I go in

public with him or a new situation, or a family get together and then

I know. I hate big gatherings now because I'm never a part of them

anymore. They suck and I can walk around just me and Mark anytime,

why should I go to a gathering like that to do the same thing. And

at the same time what so much to mingle. I understand Penny, it's

no fun!

((((((Penny)))))))

Tina W.

[Guest guest]

>> If I DIDN'T know what the issues were, then I think it would make

> sense for me to be trying to figure them out. But KNOWING what's

> happening and KNOWING that I can't change it is SOOOOOOOO

> frustrating... >>

Penny, I don't know if this is directed at my comments or not, but I

just wanted to respectfully state that I do not for one single minute

believe that it can't change...it can. It doesn't go away, but it

can be so much better...knowledge about what is going on in the

nervous systems of these kids is exploding right now. I just read

this morning on one of the therapy lists the newest research into how

one particular therapy regimen works to change brain chemistry for

defensive kids...the point being that if we can truly influence brain

chemistry through therapy instead of medication, and can provide

carefully selected information to give the child positive experiences-

-so that they can LEARN through said experience that the world isn't

so frightening and overwhelming, we can decrease the defensive

reactions these children live in every day. We can change the way

they perceive the world. That is what Hanschu's Ready Approach is

about; it is what the Wilbarger Protocol is about; it is the basis of

Henry's work, Sheila Frick's listening programs, and so many

others. Making permanent change in the manner in which the CNS

reacts to information it receives.

I am not trying to offend you...I really like you and I do understand

how hopeless it all seems sometimes. Heck, I spend a *lot* of nights

worrying about what ' future will be like. But I have spent

the past 20+ yrs working to help children...and if I didn't think

things could change for them, and change significantly, I would be

simply wasting my time. I don't think I could survive if I believed

that there was no answer to this.

I really hope this post isn't out of line...this just hit me in the

face when I read it. I am not angry, and I am not trying to anger

anyone else...and I am not trying to turn this into a discussion of

therapy. It's just that this is how I make it through the

day...because I am a " fixer " by nature, I suppose (all therapists

are...), I need to find answers to the " whys " , because those answers

lead to the " how tos " ...which give me tools for making things

different.

Maybe I should shut up and go back to bed...

Raena

[Guest guest]

>I'm so tired of the " I just don't think he's autistic " , " maybe they mis

diagnosed him " , " it's just a phase " .

, I finally screamed at a family gathering, " Do you think I WANT him

to be autistic??? YOU DON'T KNOW WHAT I LIVE WITH EVERY DAY! " and then

locked myself in the bathroom for an hour and cried my eyes out.

Everybody shut up after that. :-)

Jacquie

[Guest guest]

Penny , ((((hugs)))) .Can I join you in autism hell ? Oops ,sorry ,I forgot ,I'm

already there <sigh>

Today ,I went to a local shopping mall with Lyndsey ,Andy and my Gran . Andy

started fussing as soon as we got there .I normally put him in a shopping cart

but today I hired a liitle car that you can push the kid around in. Andy hated

it ! Screamed ,shouted help ,head banged . So my Gran takes the kids and goes

for a coffee and lets me do some shopping. I hear Andy screaming from the other

end of the mall cause he's with my Gran and not me.

So we are leaving the mall ,and Lyndsey asks , " can we go to Warner Brothers? " .

Sure why not .Andy is happy now he is not in the car thingy . Oh another thing ,

Why do they put shops like Warner Brothers at the entrance/exit?? It's like

placing candies at the checkout ! So any ways , I 'm waiting to pay for my stuff

,when Andy starts screaming . I turn round and he is sprawled on the floor .This

woman says " I DID SAY EXCUSE ME ,BUT HE WOULDN'T MOVE . "

I tell her that he's disabled and he only has a mental age of 2 and he wouldn't

understand her. " He doesn't LOOK disabled " she tells me. I reply that he has

autism. Again ,she says " He doesn't LOOK autistic " . This just made my blood

boil. I am not going to apologise to ANY ONE for my son. I asked her if she

would like me to tattoo his forehead or would she just like to live my life???

She just gave me a look of disgust , but I couldn't care less . I am so past

caring about how other people react to Andy. It's their problem .just leave us

the hell alone and let us get on with our lives .

Why in this so called modern society do even the disabled have to *look

disabled* to appease everone else. Why can't others just accept that no-one is

the same ,we all have our differences .Why can't people be tolerant. Why , why

,why ??

Ok ,vent over , away for a ciggie and a good cry

Ali

Penny wrote:Jacqui's last day of school was today. oh fun. This is the

3rd day in a row

that she has been overly frustrated after school about everything (that's

right, she saves it for me).

Last week we were invited to an " end of school " swim party. No biggy, just

a few girls from school, and some little ones. I said OK, and Jacqui seemed

fairly anxious to go. Now in the back of my mind, I'm pretty sure that

Jacqui was invited for the sake of one of the little girls. Long story

short, Mom has child jacqui's age PLUS a foster child Jacqui's age, and bio

daughter needs her own friends, so Jacqui would be the " fill in " friend for

the foster child. Of course, this is all done in a very nice, suburban

yuppie sort of way. (Ok, I'm pissed.....)

Anyhow, at this very moment I am MAD, ANGRY, FRUSTRATED, SAD, GUILTY, and

throw in any other emotion you want. I am SO mad at Jacqui!!! For what? For

being Autistic. For making ME live this autistic life.

We go to the party. Of course, I immediately feel out of place, but I

handle it ok. Jacqui gets in the pool, but PLAYS WITH NO ONE. She didn't

play with ANYONE the ENTIRE time we were there!!! All of the other kids

were playing, and within 15 minutes she was " I want to go!! " " When can we

go " on and on. The other 4 woman were happily carrying on conversations and

I had to deal with Jacqui. Then, when I showed no signs of leaving, she

hangs on my leg (I was sitting on the edge of the pool)...She literally

HANGS there. I try to ignore her, but finally I say " We have to go.

Jacqui's done " . So my friend trys to save the moment by saying it was time

to eat. Jacqui goes for this, but I STILL have to be on her. I can't

mingle, I can't talk. I have to provide the food, make sure Jacqui doesn't

handle it all, make sure she doesn't eat 10 brownies...etc.etc. - When she

was done eating, guess what.. she wanted to go. Does she say goodbye to

anyone? No. And of course, I just feel and probably look like a complete

idiot.

You all know what I mean....and I'm so completely tired of it. COMPLETELY.

One woman at school this morning commented to me that Jacqui didn't seem

autistic. Yeah, I know. You can't SEE it, until it slaps you upside the

head.

What was I thinking? I can't go anywhere in public, with strangers. My

child is NEVER going to play with more than one child at a time...I'm never

going to have a social existence.

Why does my life usually seem like it's rolling along well and that Jacqui

is doing well? BECAUSE WE LIVE AN AUTISTIC'S LIFE!! Our lives revolve

around HER. Period.

I'm pissed. I should not be angry at her, but I am. I'm one step short of

" Why can't you just go play with your friends " .

I know why. and I can't change it. ever.

Oh, BTW...Jacqui's perfectly happy now that we're home.

Stuck in Autism Hell,

Penny

" Reality is always controlled by the people who are most insane " Dogbert -

6/14/98

[Guest guest]

" I tell her that he's disabled and he only has a mental age of 2 and

he wouldn't understand her. " He doesn't LOOK disabled " she tells me.

I reply that he has autism. Again ,she says " He doesn't LOOK

autistic " . "

I hate this! I hear this too often! I really hate this!!!!!!!!!!!!

Jacquie H

[Guest guest]

" I tell her that he's disabled and he only has a mental age of 2 and

he wouldn't understand her. " He doesn't LOOK disabled " she tells me.

I reply that he has autism. Again ,she says " He doesn't LOOK

autistic " . "

I hate this! I hear this too often! I really hate this!!!!!!!!!!!!

Jacquie H

[Guest guest]

.. Again ,she says " He doesn't LOOK

> autistic " . "

>

Tell her, " Of course he does. Autistic children are very beautiful. "

Sissi

Kids' Page

http://www.isoa.net/~nitetrax/dillon.htm

Boone's Art

http://www.isoa.net/~nitetrax/bart.htm

[Guest guest]

Raena -

Yes, this was directed at your comments, but NOT in a bad way at all!!!

I'm short on time right now, but I will reply later.....

I hope I didn't offend you! You certainly didn't offend me!!! Quite the

opposite!!

Penny

Re: Sick and tired of this miserable

existence - might be long...

>> If I DIDN'T know what the issues were, then I think it would make

> sense for me to be trying to figure them out. But KNOWING what's

> happening and KNOWING that I can't change it is SOOOOOOOO

> frustrating... >>

Penny, I don't know if this is directed at my comments or not, but I

just wanted to respectfully state that I do not for one single minute

believe that it can't change...it can.

[Guest guest]

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

> " I tell her that he's disabled and he only has a mental age of 2 and

> he wouldn't understand her. " He doesn't LOOK disabled " she tells me.

> I reply that he has autism. Again ,she says " He doesn't LOOK

> autistic " . "

You should start following up this type of conversation with " since autism

is a neurological dysfunction, you'd have to be superman to actually 'see'

his disability! "

sheesh!

Sue

>

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[Guest guest]

Ali,

Ok, I don't even care if Andy is disabled or not. I'm flipping mad that

any stranger would have the GALL to do anything to your son that would

cause him to be sprawled out on the floor. How DARE she touch him or in

any way cause him to be in that position! And how DARE she be disgusted

with you after SHE caused this. If she had a problem with Andy, she

should have talked to you and NOT taken matters into her own hands. It

makes it even worse that Andy does have autism, but still ... I'm just

pissed that any stranger would do such a thing, regardless.

Ok, I'm done being angry on your behalf now. Good for you, telling her

what's what.

Debbie

[Guest guest]

Thanks Debbie ! I forgot to say as well ,my Grandma was ssssssooooooo mad ,I had

to hold her back ,(she's 77 and not in good health).

Ali

weya wrote:Ali,

Ok, I don't even care if Andy is disabled or not. I'm flipping mad that

any stranger would have the GALL to do anything to your son that would

cause him to be sprawled out on the floor. How DARE she touch him or in

any way cause him to be in that position! And how DARE she be disgusted

with you after SHE caused this. If she had a problem with Andy, she

should have talked to you and NOT taken matters into her own hands. It

makes it even worse that Andy does have autism, but still ... I'm just

pissed that any stranger would do such a thing, regardless.

Ok, I'm done being angry on your behalf now. Good for you, telling her

what's what.

Debbie

[Guest guest]

> Raena -

> Yes, this was directed at your comments, but NOT in a bad way at

all!!!

>

> I'm short on time right now, but I will reply later.....

>

> I hope I didn't offend you! You certainly didn't offend me!!!

Quite the

> opposite!! >>

Penny...I am fine. I was worried that what I had said offended you,

and that you were mad at me. Just write when you feel like it...I am

worried about you, esp. after reading your note yesterday.

Write to me privately if you like:

Lightspeed1@...

Raena

[Guest guest]

Penny,

I don't know what to say, other than I am right there with you. acts almost

perfectly normal in school , and really, anywhere that isn't home. The only

solution I have found thus far is to just tell people, " Well, you don;t live

with him " Not very effective or satisfying, but it's all I got. I finally

managed to catch some of his worse behavior on camera, and sent it to all my

skeptical family, and his teacher, labeled 's Home Movies. Everyone watched

it, of course expecting to see my " perfectly normal, oh he's just 4 " son. They

all got a shock. I hope things get better fro You and Jacquie. Just remember,

it'll pass....sorry this is so late!!!!

" It is a curious thought, but it is only when you see people looking ridiculous

that you realize just how much you love them. "

- Agatha Christie

, frazzled mom to:

, PDD-NOS, ADHD, Mixed Expressive/Receptive Language Disorder, 4

, NT, Terrible Twos, but adorable none-the-less, 2

Sick and tired of this miserable existence - might

be long...

Jacqui's last day of school was today. oh fun. This is the 3rd day in a row

that she has been overly frustrated after school about everything (that's

right, she saves it for me).

Last week we were invited to an " end of school " swim party. No biggy, just

a few girls from school, and some little ones. I said OK, and Jacqui seemed

fairly anxious to go. Now in the back of my mind, I'm pretty sure that

Jacqui was invited for the sake of one of the little girls. Long story

short, Mom has child jacqui's age PLUS a foster child Jacqui's age, and bio

daughter needs her own friends, so Jacqui would be the " fill in " friend for

the foster child. Of course, this is all done in a very nice, suburban

yuppie sort of way. (Ok, I'm pissed.....)

Anyhow, at this very moment I am MAD, ANGRY, FRUSTRATED, SAD, GUILTY, and

throw in any other emotion you want. I am SO mad at Jacqui!!! For what? For

being Autistic. For making ME live this autistic life.

We go to the party. Of course, I immediately feel out of place, but I

handle it ok. Jacqui gets in the pool, but PLAYS WITH NO ONE. She didn't

play with ANYONE the ENTIRE time we were there!!! All of the other kids

were playing, and within 15 minutes she was " I want to go!! " " When can we

go " on and on. The other 4 woman were happily carrying on conversations and

I had to deal with Jacqui. Then, when I showed no signs of leaving, she

hangs on my leg (I was sitting on the edge of the pool)...She literally

HANGS there. I try to ignore her, but finally I say " We have to go.

Jacqui's done " . So my friend trys to save the moment by saying it was time

to eat. Jacqui goes for this, but I STILL have to be on her. I can't

mingle, I can't talk. I have to provide the food, make sure Jacqui doesn't

handle it all, make sure she doesn't eat 10 brownies...etc.etc. - When she

was done eating, guess what.. she wanted to go. Does she say goodbye to

anyone? No. And of course, I just feel and probably look like a complete

idiot.

You all know what I mean....and I'm so completely tired of it. COMPLETELY.

One woman at school this morning commented to me that Jacqui didn't seem

autistic. Yeah, I know. You can't SEE it, until it slaps you upside the

head.

What was I thinking? I can't go anywhere in public, with strangers. My

child is NEVER going to play with more than one child at a time...I'm never

going to have a social existence.

Why does my life usually seem like it's rolling along well and that Jacqui

is doing well? BECAUSE WE LIVE AN AUTISTIC'S LIFE!! Our lives revolve

around HER. Period.

I'm pissed. I should not be angry at her, but I am. I'm one step short of

" Why can't you just go play with your friends " .

I know why. and I can't change it. ever.

Oh, BTW...Jacqui's perfectly happy now that we're home.

Stuck in Autism Hell,

Penny

" Reality is always controlled by the people who are most insane " Dogbert -

6/14/98

[Guest guest]

Jacquie, I did the same thing, minus the crying...I think I bit**ed and screamed

at my family for something like 45 minutes!! My Mom finally stepped in with a

cup of coffee, and said hat she'd talk to everyone and make sure they

understood, and sent me for a walk....I haven't been that mad in a LONG time,

but I felt better!!

" It is a curious thought, but it is only when you see people looking ridiculous

that you realize just how much you love them. "

- Agatha Christie

, frazzled mom to:

, PDD-NOS, ADHD, Mixed Expressive/Receptive Language Disorder, 4

, NT, Terrible Twos, but adorable none-the-less, 2

Re: Re: Sick and tired of this miserable existence

- might be long...

>I'm so tired of the " I just don't think he's autistic " , " maybe they mis

diagnosed him " , " it's just a phase " .

, I finally screamed at a family gathering, " Do you think I WANT him

to be autistic??? YOU DON'T KNOW WHAT I LIVE WITH EVERY DAY! " and then

locked myself in the bathroom for an hour and cried my eyes out.

Everybody shut up after that. :-)

Jacquie