ever have one of those days...

[Guest guest]

....when you find yourself looking back at the worst time of your life

pre-children and yearning for it???

Today, the shoebox apartment with no windows and a dirty skylight over a crummy

bar that I shared with my best friend while she was psychotically depressed and

Marc and I were on again/off again and we both held down two jobs that barely

covered the rent and we had a stalker and no food and our phone kept getting

disconnected and we lived in squalor LOOKS LIKE HEAVEN.

<sigh>

As I sat on my knees, scrubbing out the grape juice from the carpet that had

gone flying when was twirling around the living room with his new net

basketball toy swirling out from his head like a veil, and I was listening to a

man singing " on the street where you live " on the morning news magazine in a

sweet voice, I remembered the days when Marc and I would sit and play chess and

listen to Sinatra in the semi-darkness of that hideous little apartment that we

used to heat and light with candles to save money, and I felt like my heart was

breaking in half.

Life sucked, then, it's true. But it was SIMPLE.

Nothing is simple any more. Scrubbing juice off the carpet was so much more

than just scrubbing juice off the carpet. It was scrubbing away the evidence

that my child is not normal, will never be normal, and would rather play with a

cool sports toy by putting the net on his head and spinning in circles.

Listening to that song was not just listening to a pretty and nostalgic piece of

classic music, it was remembering with a gut wrenching clarity the simplicity of

Marc's and my life together before all of this crap started. A life when we

used to spend time together that wasn't tainted by fatigue and worry and

therapies and 'best outcomes' and whether or not to fire a useless home

therapist and getting a break by sending each of us out ALONE, our time together

spent just recouperating from the times spent apart - him working ridiculous

overtime so we can life in a safe village, me working hard to just keep this kid

on an even keel and away from activities like spinning around with a basketball

set on his head. It was a moment of crystal clarity, a moment when the utter

futility I feel so often just hit me full force.

One thing I have discovered that I hate most about this life is the way that the

grief process never seems to end. It builds to an unbearable level, then is

reconciled...then builds again.

Will it never be over?

Jacquie

[Guest guest]

I've had a very good week, and it distresses me. I keep think that something bad

is waiting right around the corner. If I relax and enjoy my good fortune,

that's when I'll get blindsided. Or maybe I just don't know how to stop

worrying.

Sigh.

Tuna

Re: ever have one of those days...

Wheepphh ....and here I thought I was the only one living on the " Past

Could Be Better planet " .

> " One thing I have discovered that I hate most about this life is the way

>that the grief process never seems to end. It builds to an unbearable

>level, then is reconciled...then builds again. "

That is oh so true, you think you are doing... good having a few good days

sometimes even weeks and Bam the Autism stick smacks you right up side the

head to remind you that it isn't.

I am actually dong that right now feeling sorry for myself and very

frustrated with everything.

(((Jacquie))).....we are here for you.

Nasus

[Guest guest]

>>Nothing is simple any more. Scrubbing juice off the carpet was so

much more than just scrubbing juice off the carpet. It was scrubbing

away the evidence that my child is not normal, will never be normal,

and would rather play with a cool sports toy by putting the net on

his head and spinning in circles. >>

I know what you mean, Jacquie. I think about how complicated

everything gets *just because of the autism*...when Elaine was so

sick day before yesterday, I had and alternating with

me on watching her and until almost 1 am, which is entirely

unfair to them, and I remember sitting with her and crying because I

could not give her the attention she really needed (I mean, the kid

was feverish, dizzy, and barfing...) because of ' needs. I

would love to just be able to deal with life as it comes, instead of

dealing with life in constant crisis mode...

> One thing I have discovered that I hate most about this life is the

way that the grief process never seems to end. It builds to an

unbearable level, then is reconciled...then builds again.>

Yeah. I have those moments, too...late at night, usually, when all

is calm, and I think about how odd and off balance our life is...

> Will it never be over? >

I think it permanently changes us.

Raena

[Guest guest]

>

>...when you find yourself looking back at the worst time of your life

>pre-children and yearning for it???

Um, let's see, drunk more than I wasn't. Bill collector's calling several

times a day. No boyfriend, no anything besides my dog to keep me company.

Parents not talking to me, sister 1000 miles away. Crappy job that I only

went to occasionally. Yep, I miss it (sincerely). I miss the freedom to

get in my car and go anywhere, anytime. I miss the freedom to go to the bar

and pick up some guy, just for a night. I miss the drunken stupor that kept

me numb to everything else. I was lonely, but I was free. Free to do what

I wanted to do. Free to piss my life away if I wanted to. Free to ignore

difficult situations because they didn't affect anyone but me. I do, I miss

being free.

>Nothing is simple any more.

No, nothing is simple. We have to have technologically advanced locks on

our doors, and more supplements in our pantries than most health food

stores. We have to be educated on EVERYTHING because even the

" professionals " won't take the time to do it. We have to question every

move we make as parents, because nothing is like they told us it would be.

>One thing I have discovered that I hate most about this life is the way

>that the grief process never seems to end. It builds to an unbearable

>level, then is reconciled...then builds again.

It certainly doesn't help when we're sick and just can't lie down, right? I

find myself in the same place as you. The second anniversary of Kep's dx is

just a week away, and I can feel the grief of that day replaying in my head

today. Will it ever end? I hope so, but I still see my mother grieve over

, so I have doubts.

Amy H--in Michigan

Kepler 4 1/2 ASD and Bethany 6 NT

" although one has a responsiblity to stick things out to the limit of one's

endurance, one also has to have the courage to retreat and lick one's

wounds, so as to return to the fray refreshed. "

~Kenzaburo Oe

_________________________________________________________________

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[Guest guest]

Jacquie,

I dont think it ever ends unfortuneately. We are constantly

reminded as they get older of what might have been and isnt. Even

when things get better they arent what we planned or hoped for. But

each time gets a little easier. Sorry this is hitting you full force

again.

Jacquie H

>

> ...when you find yourself looking back at the worst time of your

life pre-children and yearning for it???

>

> Today, the shoebox apartment with no windows and a dirty skylight

over a crummy bar that I shared with my best friend while she was

psychotically depressed and Marc and I were on again/off again and we

both held down two jobs that barely covered the rent and we had a

stalker and no food and our phone kept getting disconnected and we

lived in squalor LOOKS LIKE HEAVEN.

>

> <sigh>

>

> As I sat on my knees, scrubbing out the grape juice from the carpet

that had gone flying when was twirling around the living room

with his new net basketball toy swirling out from his head like a

veil, and I was listening to a man singing " on the street where you

live " on the morning news magazine in a sweet voice, I remembered the

days when Marc and I would sit and play chess and listen to Sinatra

in the semi-darkness of that hideous little apartment that we used to

heat and light with candles to save money, and I felt like my heart

was breaking in half.

>

> Life sucked, then, it's true. But it was SIMPLE.

>

> Nothing is simple any more. Scrubbing juice off the carpet was so

much more than just scrubbing juice off the carpet. It was scrubbing

away the evidence that my child is not normal, will never be normal,

and would rather play with a cool sports toy by putting the net on

his head and spinning in circles. Listening to that song was not

just listening to a pretty and nostalgic piece of classic music, it

was remembering with a gut wrenching clarity the simplicity of Marc's

and my life together before all of this crap started. A life when we

used to spend time together that wasn't tainted by fatigue and worry

and therapies and 'best outcomes' and whether or not to fire a

useless home therapist and getting a break by sending each of us out

ALONE, our time together spent just recouperating from the times

spent apart - him working ridiculous overtime so we can life in a

safe village, me working hard to just keep this kid on an even keel

and away from activities like spinning around with a basketball set

on his head. It was a moment of crystal clarity, a moment when the

utter futility I feel so often just hit me full force.

>

> One thing I have discovered that I hate most about this life is the

way that the grief process never seems to end. It builds to an

unbearable level, then is reconciled...then builds again.

>

> Will it never be over?

>

> Jacquie

>

>

>

[Guest guest]

Jacquie, had one of them days a couple of days ago.

Horrible day.

Wretched.

Sorry it's happening to you. Hopefully, it goes as quickly and unexpectedly

as it came.

And may it stay the hell away.

Ugly, horrible place to be.

Grace

ever have one of those days...

>

> ...when you find yourself looking back at the worst time of your life

pre-children and yearning for it???

>

> Today, the shoebox apartment with no windows and a dirty skylight over a

crummy bar that I shared with my best friend while she was psychotically

depressed and Marc and I were on again/off again and we both held down two

jobs that barely covered the rent and we had a stalker and no food and our

phone kept getting disconnected and we lived in squalor LOOKS LIKE HEAVEN.

>

> <sigh>

>

> As I sat on my knees, scrubbing out the grape juice from the carpet that

had gone flying when was twirling around the living room with his new

net basketball toy swirling out from his head like a veil, and I was

listening to a man singing " on the street where you live " on the morning

news magazine in a sweet voice, I remembered the days when Marc and I would

sit and play chess and listen to Sinatra in the semi-darkness of that

hideous little apartment that we used to heat and light with candles to save

money, and I felt like my heart was breaking in half.

>

> Life sucked, then, it's true. But it was SIMPLE.

>

> Nothing is simple any more. Scrubbing juice off the carpet was so much

more than just scrubbing juice off the carpet. It was scrubbing away the

evidence that my child is not normal, will never be normal, and would rather

play with a cool sports toy by putting the net on his head and spinning in

circles. Listening to that song was not just listening to a pretty and

nostalgic piece of classic music, it was remembering with a gut wrenching

clarity the simplicity of Marc's and my life together before all of this

crap started. A life when we used to spend time together that wasn't

tainted by fatigue and worry and therapies and 'best outcomes' and whether

or not to fire a useless home therapist and getting a break by sending each

of us out ALONE, our time together spent just recouperating from the times

spent apart - him working ridiculous overtime so we can life in a safe

village, me working hard to just keep this kid on an even keel and away from

activities like spinning around with a basketball set on his head. It was

a moment of crystal clarity, a moment when the utter futility I feel so

often just hit me full force.

>

> One thing I have discovered that I hate most about this life is the way

that the grief process never seems to end. It builds to an unbearable

level, then is reconciled...then builds again.

>

> Will it never be over?

>

> Jacquie

>

>

>

[Guest guest]

ahhhhh..

a fellow pessimist.

It's the only way to live.

Penny

Re: ever have one of those days...

I've had a very good week, and it distresses me. I keep think that something

bad is waiting right around the corner. If I relax and enjoy my good

fortune, that's when I'll get blindsided. Or maybe I just don't know how to

stop worrying.

Sigh.

[Guest guest]

Answer to your first question? Nope...never will I EVER find myself yearning

for the worst time in my life...basically cuz it was tooooooo horrible.

Secondly, will it ever be over?

Nope. I know that now. I know it because when I pick up my daughter from

school and she goes ballistic because there are no " lunchables fun-snacks "

left, and she screams her high-pitched, frustrated scream all the way home,

and starts yelling and crying and throwing things.....all because the

" morning assembly " , which I and her teacher had assured her would most

likely be over at 10:15am, never happened until this afternoon, and she

didn't go because it was too dark, and.....on and on and on......and then

she instantly starts laughing when she sees a commercial....and she's done

nothing but EAT since she's walked int he door and dh had to promise to go

to the store to get her something else in order for her to calm

down....(need I say more?)

Nope. This shit is going to keep on happening. I know it. We all know it.

We are in the process of writing to our district's region asst

superintendent and HER boss, because we still have not received ANY response

from our principal concerning next year's placement.

My Gawd. If a change in assembly time can put my daughter into Autistic

Hell, what do they think a change of SCHOOLS will do to her?

Pissed beyond belief...and right there with ya, Jacquie.

Penny