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RE: <Sighs>

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What Jacquie said : )

I'm glad you posted tho, I know I frequently have the same feelings. I know

I'm going to be a cracked mess when it comes to dealing with schools.

We are here to talk you through the dark times when they come.

(SAHM in GA)

MSN elizabethloht@...

n 33, mo, no formal dx

Phoebe, 11 wks

Re: <Sighs>

>

> > Each time I take a step forward towards addressing Jordan's needs

> > (hiring therapists, getting him in EI preschool, MFE planning meeting,

> > etc), I end up feeling blue, depressed, " why me? " " woe is me " kinda of

> > attitude. The next day I'm a bitch, because I literally feel at the end

> > of my rope, like it's stretched so tight it's gonna snap.

>

> Of course. It's another moment that reminds you that your child is not

> walking the 'normal' path, that YOU are not walking the path you

expected --

> so it's another moment that brings on mourning and feelings of loss.

>

>

> >

> > Is there a light at the end of this tunnel?????? I'm not even talking

> > about " cures " for my son ... though, if anyone has a magic want they can

> > wave I'll give you everything I own to wave it over Jordan. No,

> > seriously, I'm talking about for myself. I want to be able to function

> > in my son's best interest without the " crash & burn " effect happening

> > after every step. This is the part of the " rollercoaster " that I'm

> > really having trouble handling.

> >

> > I want acceptance without giving up, you know?

>

>

> I can't speak for anyone but myself, but I can tell you that for me,

> acceptance without submission happened. But instead of accepting it and

> still hoping to change it, I accept it and work hard to help be the

> best he can possibly be, always understanding that the goals I have

for

> him are, of course, goals that are realistic for HIM, not for the rest of

> the kids in the world.

>

> I wish I could tell you how I got here. But I can't. It just happened,

> gradually, as I worked my way through the grief and the mourning.

>

> This is not to say that I won't greive again. I'm sure there are going to

> be times in my future when I go through the mourning process all over

again.

> One that I already anticipate is when he goes to high school with new kids

> and there'll be a whole new set of comparisons to make and feel sad about.

> But I'm sure there will be times between then and now; probably I'll go

> through it every time he starts something new - like the team sports dh

> wants him involved in.

>

> I'm not sure the grief process ever truly ends. But I do know that every

> time you go through it makes it easier for the next time, until it just

> becomes something that you deal with and move on.

>

> It's a long road. But you're already on it, and you're moving forward.

> That's all you can do, and it WILL lead to a smoother journey.

>

> (((hugs)))

>

> Jacquie

>

>

>

>

>

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>

> Each time I take a step forward towards addressing Jordan's needs

> (hiring therapists, getting him in EI preschool, MFE planning

> meeting, etc), I end up feeling blue, depressed, " why me? " " woe is

> me " kinda of attitude. The next day I'm a bitch, because I

> literally feel at the end of my rope, like it's stretched so tight

> it's gonna snap. >

It's the " Holland " thing...not where you planned on going. I look at

the anger as part of that fright/flight/fight thing...we are scared,

can't run away from it if we want to help our kid...so we go into

fight mode. At least you know your nervous system is working right?

Seriously, think of this as your body's way of telling you what you

are feeling deep inside...and as a hint as to what to do to care for

yourself...all that calming, organizing stuff we do for our kids to

keep their systems level works on typical systems, too...use it.

> Is there a light at the end of this tunnel?????? >

If there is, my kid's stimming off it...

> I'm not even talking about " cures " for my son ... though, if anyone

> has a magic want they can wave I'll give you everything I own to

> wave it over Jordan. >

Well, I have first dibs on the wand...but will definitely pass it

your way...soon as it shows up. :-)

> I want acceptance without giving up, you know? I'm in for a rocky

> rocky road if I can't figure out how to handle this ...>

You know, I think that acceptance is a tricky thing...and what I

found is that if I focussed on accepting **---meaning allowing

him to be who he is without having to always feel like he needs to

be " fixed " ---it got easier. I won't ever accept CDD...I mean, how do

you do that? It won't ever be " okay " with me that this happened to

him...but I don't dwell on that. I look at pieces of the problem;

sensory issues, health issues, cognitive or language issues...and try

to tackle them one at a time. Some folks can sit down with the whole

elephant on the plate...I have to go get a bite at a time.

For whatever that is worth...

Raena

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In a message dated 4/30/03 12:57:12 PM Eastern Daylight Time,

jbsmom@... writes:

> Is there a light at the end of this tunnel??????

yes dear there is-it is all your friends here shining you a light to help

guide you-if you look back you may see someone you can shine your light on

(when you get a chance that is).

Hugs,thoughts and prayers.

The Grammas & Keion

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I agree with what Jacquie said, its a new reminder that Jordan isn't walking the

" normal " path plus for me its a reminder that is not going to wake up one

day talking and being " normal " like I kept hoping and praying. Wish I could make

you feel better but do know that you are not alone down this long journey. (and

I will bring the water LOL)

Warm Regards and Hugs

<Sighs>

I woke up in a perfectly awful mood today. And I'm not surprised ...

yesterday I went to observe 3-year old preschool classrooms at my county

mrdd school. Despite my best efforts, I wallowed in a highly depressive

mood last night ... which I also expected.

Each time I take a step forward towards addressing Jordan's needs

(hiring therapists, getting him in EI preschool, MFE planning meeting,

etc), I end up feeling blue, depressed, " why me? " " woe is me " kinda of

attitude. The next day I'm a bitch, because I literally feel at the end

of my rope, like it's stretched so tight it's gonna snap.

Is there a light at the end of this tunnel?????? I'm not even talking

about " cures " for my son ... though, if anyone has a magic want they can

wave I'll give you everything I own to wave it over Jordan. No,

seriously, I'm talking about for myself. I want to be able to function

in my son's best interest without the " crash & burn " effect happening

after every step. This is the part of the " rollercoaster " that I'm

really having trouble handling.

I want acceptance without giving up, you know? I'm in for a rocky rocky

road if I can't figure out how to handle this ... he goes to special

needs preschool in the fall and I have all the meetings, forms, tests,

observations to do between now and then. I'm gonna go nuts if I'm this

depressed after each and every one of these steps.

Debbie with twins, who is once again in a " Why me? Why Jordan? Why

Autism? " crappy-assed mood again.

- Jordan (ASD) 2.5yo

- (NT) 2.5yo

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Debbie,

I hear ya. For me it was the shock of seeing where the typical kids his age

were and understanding how very, very far behind he was (and is). That's

probably different for you because he has a twin, but yeah, jumping through

all the hoops and wondering " why do I have to do all this " and...*sigh*

It's gotten better with time...and the zoloft helps quite a bit too.

(Seriously.)

{{{{{Debbie}}}}}

No advice, but a sympathetic shoulder.

-Sara.

Wife to Matt

SAHM to (3.5, autism)

Gabe (23.5 mos, speech delay)

and 'Punkin' due anytime now!

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>

> > Day to day issues need to be taken a day at a time. I don't look at

> > " cures " , I don't feel my daughter needs to be " cured " , because who would

> she

> > be without Autism?

>

> My feelings about exactly. Of course, it depends on how you view it:

> do you see autism as something that is hiding your child, or something

that

> is part of your child as whole? Those who see autism as something that is

> hiding their child will always hope for a cure.

>

>

Yes, to both of these statements. I have never felt that autism was hiding

Putter. Putter is so very autistic that there is little else left.

But one thing that makes it easier to accept your child as an autistic

person (and always continue working on moving forward which is what one does

with all children) is their degree of happiness. And perhaps the child's

ability to learn well. I imagine that having a very unhappy and very

difficult to teach child would make you spend more time wishing things were

otherwise than having a bright and happy autistic child. Makes sense to me.

So that piece is kind of luck of the draw.

Salli

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> But one thing that makes it easier to accept your child as an autistic

> person (and always continue working on moving forward which is

> what one does

> with all children) is their degree of happiness. And perhaps the child's

> ability to learn well. I imagine that having a very unhappy and very

> difficult to teach child would make you spend more time wishing

> things were

> otherwise than having a bright and happy autistic child. Makes

> sense to me.

> So that piece is kind of luck of the draw.

Oh I agree. I wish I could make things easier for but, as you say,

autism is so much a part of him that I simply can't imagine him without it.

I have a great deal of hope that with time and therapy he will be able to

learn the things that I would change for him. Not everyone has that luxury.

There have been times when I have felt that autism was a seperate thing, a

thing hiding my child, pulling him away from me, doing horrible things to

him and to us. Those times have been few and far between. If I felt that

way regularly then oh yes, I would wave that magic wand.

-Sara.

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