[Guest guest]

In a message dated 4/22/03 10:57:57 PM Eastern Daylight Time,

sgarvey@... writes:

> I stepped away from the computer for a minute and Boone decided to answer my

> email.

>

> Sorry about that..

>

>

Hi Boone-nice to hear from you-how are you doing?

The Grammas & Keion

[Guest guest]

Hi Boone?

Sue

> An By To Da bone.

>

>

[Guest guest]

Sissi, No need to apologize for Boone. I like getting his replies every

so often. They make me smile.

Debbie with twins

- Jordan (ASD) 2.5yo

- (NT) 2.5yo

[Guest guest]

I agree with Debbie..Hearing from Boone or any of our children is nice :-)

RE:

Sissi, No need to apologize for Boone. I like getting his replies every

so often. They make me smile.

Debbie with twins

- Jordan (ASD) 2.5yo

- (NT) 2.5yo

[Guest guest]

oh no...don't apologize...

HI BOONE!

Penny :-D

Re:

> An By To Da bone.

I stepped away from the computer for a minute and Boone decided to answer my

email.

Sorry about that..

Sissi

[Guest guest]

oh no...don't apologize...

HI BOONE!

Penny :-D

Re:

> An By To Da bone.

I stepped away from the computer for a minute and Boone decided to answer my

email.

Sorry about that..

Sissi

[Guest guest]

oh no...don't apologize...

HI BOONE!

Penny :-D

Re:

> An By To Da bone.

I stepped away from the computer for a minute and Boone decided to answer my

email.

Sorry about that..

Sissi

[Guest guest]

Debbie, I'm so sorry you're going through this. I'm not sure that it

gets any better so much that you learn to manage it better. IM me if you

ever need to talk.

Maggie

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Debbie, I'm so sorry you're going through this. I'm not sure that it

gets any better so much that you learn to manage it better. IM me if you

ever need to talk.

Maggie

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

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:

>

> > 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

>

>

>

>

>

[Guest guest]

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:

>

> > 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

>

>

>

>

>

[Guest guest]

> 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

[Guest guest]

> 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

[Guest guest]

> 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

[Guest guest]

In a message dated 4/30/03 11:27:14 AM Eastern Daylight Time,

rgr4us@... writes:

> For whatever that is worth...

>

> Raena

>

>

>

Your wisdom is priceless!

The Grammas & Keion

[Guest guest]

In a message dated 4/30/03 11:27:14 AM Eastern Daylight Time,

rgr4us@... writes:

> For whatever that is worth...

>

> Raena

>

>

>

Your wisdom is priceless!

The Grammas & Keion

[Guest guest]

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

[Guest guest]

You are still just starting down the road of autism and there are going to

be times when you go through these feelings. I've known about Ebony for

almost four years and I still go through this. It is always a struggle. It

has gotten easier though. I don't know what to tell you other than use this

list and maybe another support group, or religous leader, or friend, or

family member to lean on during these times. I also think that we all need

to find a balance in our lives. If autism is the ENTIRE focus, there is

going to be a major problem. If not now then eventually. It is hard to

find the time to balance other interests into our lives, but we need to do

that. Good luck.

Tamara

mom to Ebony, 5 years old, asd, adhd, bipolar

and , 2, polish (lol)

wife to Terry

>

>Reply-To: parenting_autism

>To: " Parenting_Autism " parenting_autism >

>Subject:

>Date: Wed, 30 Apr 2003 08:49:30 -0400

>

>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

>

>

>

>

[Guest guest]

I agree with everything Jacquie has said here:

>>>>>>>>>

> 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.

<<<<<<<<<

I have figured out that I have to plan way ahead... Not really in a specific

way, but more general.

For example; I am very involved in Jacqui's school. I've gotten to know the

staff and they know me. I'm already planning for next year, etc. Keeping

one step ahead lessens the blow when change happens, for me anyhow.

Will the unexpected happen? Sure. Happens all the time. You get down, you

get pissed off, you move on.

My next big leap (and likely my next huge anxiety trap) is going to be

middle school. I know it, and when the time is right I will plan for it.

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? Of course, I'd like the screaming to go away, and the

speech to be better, but that will come. I don't look at it as a light at

the end of the tunnel anymore. There is no end to the tunnel, you just have

to keep your eyes and mind open to all of the twists and turns.

Pretty positive spin, huh? Don't worry, tomorrow I might feel like crawling

in bed and staying there forever. That's how it is. And it does get easier.

Penny (hugs)

[Guest guest]

I wish I had some words to say to make you feel better. I never had a

normal child in my household to compare to on a day to day basis. He

had other health issues when he was very young, so the other developemental

issues weren't at the forefront for me. With , I wasn't aware of his

problems until around 3, although he had started intervention for motor

delays at 9 months. I do remember watching him in line at kindergarden and

feeling bad for him when I could plainly see how delayed he was socially,

but my feelings were for him. I guess since our troubles started right from

the birth of our first child and I started seeing other children with

disabilities from the time he was 6 months old, it's just always been a part

of my life.

I am inclined to think that as time goes by, you will get more matter of

fact about Jordan and what needs done for him, but right now, this is still

very new for you and you are still grieving for the child you thought he

would be. (((((Debbie)))))

Sue

[Guest guest]

I wish I had some words to say to make you feel better. I never had a

normal child in my household to compare to on a day to day basis. He

had other health issues when he was very young, so the other developemental

issues weren't at the forefront for me. With , I wasn't aware of his

problems until around 3, although he had started intervention for motor

delays at 9 months. I do remember watching him in line at kindergarden and

feeling bad for him when I could plainly see how delayed he was socially,

but my feelings were for him. I guess since our troubles started right from

the birth of our first child and I started seeing other children with

disabilities from the time he was 6 months old, it's just always been a part

of my life.

I am inclined to think that as time goes by, you will get more matter of

fact about Jordan and what needs done for him, but right now, this is still

very new for you and you are still grieving for the child you thought he

would be. (((((Debbie)))))

Sue

[Guest guest]

I wish I had some words to say to make you feel better. I never had a

normal child in my household to compare to on a day to day basis. He

had other health issues when he was very young, so the other developemental

issues weren't at the forefront for me. With , I wasn't aware of his

problems until around 3, although he had started intervention for motor

delays at 9 months. I do remember watching him in line at kindergarden and

feeling bad for him when I could plainly see how delayed he was socially,

but my feelings were for him. I guess since our troubles started right from

the birth of our first child and I started seeing other children with

disabilities from the time he was 6 months old, it's just always been a part

of my life.

I am inclined to think that as time goes by, you will get more matter of

fact about Jordan and what needs done for him, but right now, this is still

very new for you and you are still grieving for the child you thought he

would be. (((((Debbie)))))

Sue

[Guest guest]

There is no tunnel, Auntie 'Em, there is no tunnel. I agree with that.

It's just a life with , and since I don't have other children, I

don't know any different. I have glimpses of the world parents of NT

kids have, but that is all. I don't wonder how I do it, I just do it.

Similar to being a single mother for so long--people say to me, " I don't

know how you can do it. " I say, " I don't know any different. "

But, if I could have that magical wish, I would take away 's HPE

and resulting difficulties. Because his life would be so much easier.

He could talk with his mouth, and that makes such a difference in our

speaking world. People wouldn't look at him strangely because he was

stimming. The list goes on....

This doesn't mean I don't love my son or that I don't accept him the way

he is now. It just means that if wishes were horses, this beggar would

ride.

Maggie

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

> 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.

I don't think one way of viewing it is more correct than the other. But I

do know that parents who see autism as a force affecting their kids will

always be hoping that one day there will be something to take it away. I

find peace in feeling that taking the autism away from would change him

so much I wouldn't recognize the child I love so fiercely.

Of course, I'd like the screaming to go away, and the

> speech to be better, but that will come.

Same here! Boy, I could use a rest from that vocal stimming, let me tell

you! OMG, no wonder I have a headache every waking moment...

I don't look at it as a light at

> the end of the tunnel anymore. There is no end to the tunnel, you just

have

> to keep your eyes and mind open to all of the twists and turns.

Try this on: there is no tunnel. (think: " there is no spoon " and you'll

know EXACTLY what I mean)

Jacquie

[Guest guest]

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!