Re: This got me...I had to share!

[Guest guest]

> Very true. We all have gone through the mourning. Some pass through

the stages more quickly than others. For me I cried the day after Sully was

dx. I was inconsolable.

I cried the day Putter turned three. I could no longer deny that a three

year old who did not open birthday gifts had a serious problem. He was my

fourth child after all.

I did not cry at the dx. In fact, I told them, " Don't worry that I will be

upset if you tell me he has autism because I already know that. "

Salli

[Guest guest]

> Very true. We all have gone through the mourning. Some pass through

the stages more quickly than others. For me I cried the day after Sully was

dx. I was inconsolable.

I cried the day Putter turned three. I could no longer deny that a three

year old who did not open birthday gifts had a serious problem. He was my

fourth child after all.

I did not cry at the dx. In fact, I told them, " Don't worry that I will be

upset if you tell me he has autism because I already know that. "

Salli

[Guest guest]

> Am I the only person who would give my child the cure in an

> instant, if it existed? >

No, Debbie...you're not. I pray for a cure every single day.

> I cannot see choosing a life of struggle over normalcy. >

Well, I think that we would struggle anyway, because of other things,

but I would give a lot to be able to be part of the regular family

stuff that people do, instead of always having to keep off to

the side. I always feel this way at the holidays, because I see so

many fun things going on that can't even begin to be a part

of. I'd give a lot to take him caroling or help him pick out

presents for everyone...little things that he can't even begin to

understand; granted, he doesn't miss it...but I miss it for him. I

got to open his presents again this year; he loved the mini-tramp,

and a little ball I bought on a lark, but while the other three had

been rattling, poking, and peeking at packages for weeks, has

no desire to see what is under that paper. That makes me incredibly

sad.

> I don't think giving my son a " cure " would change **who** he is ...

> it would allow him to shine more brightly, it would allow him to

> express himself, share himself. To me, his autism is like a

> shadow, a curtain that separates him from the world. Sometimes he

> can part that curtain and for a brief shining moment, I see Jordan

> in all his glory ... and then the curtain closes and he is shrouded

> again. >

I watched my little boy slip away...at first bit by bit, and then

like falling off a cliff...autism is something that took away

from us.

Maybe it's because it's so clear that HE wishes he could be like the

other kids...I don't know. Maybe it's because I can see what it has

done to my other kids' lives...how it impacts them in ways that just

aren't fair. We have to work so hard to help him feel safe and

happy, gently encouraging him to be a part of things...but so many

tiny things are just huge for him. I remember yesterday planning to

tell his tutor all about this actual conversation he had with

someone...recall meaning to write it to the list, complete with a

description of all his wonderful words...this morning I am so

exhausted I can't tell if I dreamed the whole thing or if it really

happened. Imagine that...dreaming that a nine yr old said a sentence

or two and planning out how to tell the world. I'd trade that

experience in a flash to hear him pop off at me like other nine yr

olds...of course, I probably wouldn't appreciate it if we hadn't been

at this place first.

There is no doubt that I have learned things I would never have

understood so clearly if we hadn't gone through this...I am without a

doubt a better person, and a better therapist, because of this. I

have seen both the best and worst in myself and others, and I have

met wonderful people I might never have known if we hadn't been

tossed into this life. has an innocence and sweetness about

him that would be long gone if he understood the world better, and I

cherish that. But yeah...I would take a cure. Today. I would end

this if I could.

It's a mixed bag for me. The truth is, there has been a lot of good

that has come from this experience, but autism has changed who he

is...he will never be that same little guy we lost, because he will

always remember this. There are pieces of him that we just glimpse,

that sneak out for a second and retreat back into that place of fear

that he lives in so much of the time. Donna calls

shutdown " the big black nothingness that comes to swallow you " ...I

can't help wonder if it feels that way to .

He can't follow people walking up to him...they seem to just appear,

from what we can see in his reactions...so he can *never* trust what

is around him. He can't make his hands do what he wants them to. He

tries so hard to talk, looking hopefully into my eyes as I try to

decipher the scrambled vocalizations and make an what I hope is a

sensible response. Trying all the time...or just giving up because

it seems so futile. I can't imagine going through life that way.

Raena

[Guest guest]

This topic has raised a lot of response. I think that the major difference in

whether we would take a cure for our children or not depends upon how affected

that child is. My children are high functioning. I an most assuredly an Aspie.

So I don't necessarily see it as a bad thing a challenging issue, yes but I look

at it as things could be worse. My kids could have a horrific disease. But I

haven't had to watch my children slip away. Mine were as they are from the

moment they were born. We noticed " little differences " even then so I haven't

actually lost anything, I just never got somethings but in other ways I got

bunuses and that is good. If they were severe, I am certain that I would want

that cure if there was one I would likely see this as a horrific disease. I

haven't watched them be a vibrant bubbly child one day and then watch that child

vanish before my eyes. I am just in a different situation than many here And I

have to say I am glad of it because I honestly don't know how you cope with

having a child who won't let you into their world (or I should say can't let you

in). I many times force my way into their world (my kids) but I get in and that

is a major difference beween my situation and those of parents who have severely

affected kids.

I do hope for a cure too not for my children but for others affected because I

know there would be no greater gift to those parents than to have a child who

could respond as the parents hoped they would. That would be a wonderful thing

and I hope someday we will see that day when lists like this won't be necessary

(as awesome as it is) because there is no more autism.

CHRIS

[Guest guest]

This topic has raised a lot of response. I think that the major difference in

whether we would take a cure for our children or not depends upon how affected

that child is. My children are high functioning. I an most assuredly an Aspie.

So I don't necessarily see it as a bad thing a challenging issue, yes but I look

at it as things could be worse. My kids could have a horrific disease. But I

haven't had to watch my children slip away. Mine were as they are from the

moment they were born. We noticed " little differences " even then so I haven't

actually lost anything, I just never got somethings but in other ways I got

bunuses and that is good. If they were severe, I am certain that I would want

that cure if there was one I would likely see this as a horrific disease. I

haven't watched them be a vibrant bubbly child one day and then watch that child

vanish before my eyes. I am just in a different situation than many here And I

have to say I am glad of it because I honestly don't know how you cope with

having a child who won't let you into their world (or I should say can't let you

in). I many times force my way into their world (my kids) but I get in and that

is a major difference beween my situation and those of parents who have severely

affected kids.

I do hope for a cure too not for my children but for others affected because I

know there would be no greater gift to those parents than to have a child who

could respond as the parents hoped they would. That would be a wonderful thing

and I hope someday we will see that day when lists like this won't be necessary

(as awesome as it is) because there is no more autism.

CHRIS

[Guest guest]

This topic has raised a lot of response. I think that the major difference in

whether we would take a cure for our children or not depends upon how affected

that child is. My children are high functioning. I an most assuredly an Aspie.

So I don't necessarily see it as a bad thing a challenging issue, yes but I look

at it as things could be worse. My kids could have a horrific disease. But I

haven't had to watch my children slip away. Mine were as they are from the

moment they were born. We noticed " little differences " even then so I haven't

actually lost anything, I just never got somethings but in other ways I got

bunuses and that is good. If they were severe, I am certain that I would want

that cure if there was one I would likely see this as a horrific disease. I

haven't watched them be a vibrant bubbly child one day and then watch that child

vanish before my eyes. I am just in a different situation than many here And I

have to say I am glad of it because I honestly don't know how you cope with

having a child who won't let you into their world (or I should say can't let you

in). I many times force my way into their world (my kids) but I get in and that

is a major difference beween my situation and those of parents who have severely

affected kids.

I do hope for a cure too not for my children but for others affected because I

know there would be no greater gift to those parents than to have a child who

could respond as the parents hoped they would. That would be a wonderful thing

and I hope someday we will see that day when lists like this won't be necessary

(as awesome as it is) because there is no more autism.

CHRIS

[Guest guest]

> I fear I'm making a terrible mess of this post. I FEEL empathy,

> but I'm not very good at expressing it, so I'll sign off here and

> hope you've read this seeing the good faith in which the whole

> thing has been intended. >

Not a mess at all, Jacquie....very kind and thoughtful post. Thanks.

Raena

[Guest guest]

> have to say I am glad of it because I honestly don't know how you

> cope with having a child who won't let you into their world (or I

> should say can't let you in). I many times force my way into

> their world (my kids) but I get in and that is a major difference

> beween my situation and those of parents who have severely affected kids.

Yes. Yes. Very well said.

is there, or he is not. There's nothing I can do to " force " my way

in or make him come back once he's gone.

We started saying that when he was very little. Before his first birthday.

We'd be playing, and he'd leave, and we both (Matt and I) just knew that was

it. We'd say, " Whoops, he's gone. " and just watch him for awhile. It was

something we laughed about. Then.

Even so, I know there are a lot of kids who are older than he is and don't

have the skills he does. I am grateful for what we have. I am profoundly

grateful for his intelligence and his " spark " -- they let me hope.

-Sara.

[Guest guest]

> have to say I am glad of it because I honestly don't know how you

> cope with having a child who won't let you into their world (or I

> should say can't let you in). I many times force my way into

> their world (my kids) but I get in and that is a major difference

> beween my situation and those of parents who have severely affected kids.

Yes. Yes. Very well said.

is there, or he is not. There's nothing I can do to " force " my way

in or make him come back once he's gone.

We started saying that when he was very little. Before his first birthday.

We'd be playing, and he'd leave, and we both (Matt and I) just knew that was

it. We'd say, " Whoops, he's gone. " and just watch him for awhile. It was

something we laughed about. Then.

Even so, I know there are a lot of kids who are older than he is and don't

have the skills he does. I am grateful for what we have. I am profoundly

grateful for his intelligence and his " spark " -- they let me hope.

-Sara.

[Guest guest]

> have to say I am glad of it because I honestly don't know how you

> cope with having a child who won't let you into their world (or I

> should say can't let you in). I many times force my way into

> their world (my kids) but I get in and that is a major difference

> beween my situation and those of parents who have severely affected kids.

Yes. Yes. Very well said.

is there, or he is not. There's nothing I can do to " force " my way

in or make him come back once he's gone.

We started saying that when he was very little. Before his first birthday.

We'd be playing, and he'd leave, and we both (Matt and I) just knew that was

it. We'd say, " Whoops, he's gone. " and just watch him for awhile. It was

something we laughed about. Then.

Even so, I know there are a lot of kids who are older than he is and don't

have the skills he does. I am grateful for what we have. I am profoundly

grateful for his intelligence and his " spark " -- they let me hope.

-Sara.

[Guest guest]

> > Am I the only person who would give my child the cure in an

> > instant, if it existed? >

>

> No, Debbie...you're not. I pray for a cure every single day.

I don't. I never watched Putter slipping away as Raena describes (that

would be heart-breaking and I have no idea how I would feel then).

I never lost Putter. Putter was always Putter. Yes, he does have better

eye contact as a small baby, but I actually think that was merely before he

realized that he could avoid the uncomfortable eye contact by lookng away.

Very soon I noticed that he did not look at me when he nursed.

But Putter has always seemed so very happy and I see a great deal of

enjoyment in the things he does. I do not see efforts to interact that

fail; I see that he prefers many things to people.

If Putter did not have autism, he would be some little boy that I never met.

It is too much a part of him to separate any NT Putter from the real Putter.

Putter is the real Putter.

All I can do is help him to as much independence as possible and he would

agree with me for I am sure it is what he wants.

Salli

[Guest guest]

> I fear I'm making a terrible mess of this post. I FEEL empathy, but I'm

not

> very good at expressing it, so I'll sign off here and hope you've read

this

> seeing the good faith in which the whole thing has been intended.

I thought it was a very nice posting, and quite empathetic. And I feel

almost exactly as you do, Jacquie.

Salli

[Guest guest]

> If I could never wish cured (my first choice) I would at

> least wish him to have been autistic from birth, to have grown up

with a filter of autism rather than having been surrounded by it

later and without warning.

>

> Does this sound stupid?

It doesn't sound stupid to me at all Jacquie but then I see both

sides in my children. is . His personality didn't change.

He has always had problems. Some I didn't see because they were so

mild I didn't think he could be affected by autism, some because he

was doped on seizure meds and I thought that was the reason. I never

questioned his development beyond the affects I saw from the seizures

and meds.

is a totally different story. at 3 was not the I

had at 9 mos. Going through such a dramatic regression is like

losing a child to a deadly disease. Only instead of the child being

gone, there is another child in her place that is still physically

the child the parents love, but mentally is someone totally

different. It's like Invasion of the Body Snatchers or something. And

there's not a damned thing you can do to stop it. They slid closer

and closer to the cliff and you're praying and hoping they don't go

over the edge and when they do...

Terrifying comes close to describing it but even that doesn't do it

justice.

You're right, Jacquie. I'd rather had been born this way.

Tina

[Guest guest]

> If I could never wish cured (my first choice) I would at

> least wish him to have been autistic from birth, to have grown up

with a filter of autism rather than having been surrounded by it

later and without warning.

>

> Does this sound stupid?

It doesn't sound stupid to me at all Jacquie but then I see both

sides in my children. is . His personality didn't change.

He has always had problems. Some I didn't see because they were so

mild I didn't think he could be affected by autism, some because he

was doped on seizure meds and I thought that was the reason. I never

questioned his development beyond the affects I saw from the seizures

and meds.

is a totally different story. at 3 was not the I

had at 9 mos. Going through such a dramatic regression is like

losing a child to a deadly disease. Only instead of the child being

gone, there is another child in her place that is still physically

the child the parents love, but mentally is someone totally

different. It's like Invasion of the Body Snatchers or something. And

there's not a damned thing you can do to stop it. They slid closer

and closer to the cliff and you're praying and hoping they don't go

over the edge and when they do...

Terrifying comes close to describing it but even that doesn't do it

justice.

You're right, Jacquie. I'd rather had been born this way.

Tina

[Guest guest]

> If I could never wish cured (my first choice) I would at

> least wish him to have been autistic from birth, to have grown up

with a filter of autism rather than having been surrounded by it

later and without warning.

>

> Does this sound stupid?

It doesn't sound stupid to me at all Jacquie but then I see both

sides in my children. is . His personality didn't change.

He has always had problems. Some I didn't see because they were so

mild I didn't think he could be affected by autism, some because he

was doped on seizure meds and I thought that was the reason. I never

questioned his development beyond the affects I saw from the seizures

and meds.

is a totally different story. at 3 was not the I

had at 9 mos. Going through such a dramatic regression is like

losing a child to a deadly disease. Only instead of the child being

gone, there is another child in her place that is still physically

the child the parents love, but mentally is someone totally

different. It's like Invasion of the Body Snatchers or something. And

there's not a damned thing you can do to stop it. They slid closer

and closer to the cliff and you're praying and hoping they don't go

over the edge and when they do...

Terrifying comes close to describing it but even that doesn't do it

justice.

You're right, Jacquie. I'd rather had been born this way.

Tina

[Guest guest]

> Am I the only person who would give my child the cure in an instant, if

> it existed?

>

Nope! There's a whole organization out there called " Cure Autism Now " !

You're definitely not alone.

> P.S. - Who may be misunderstanding what people are saying ... and is not

> condemning their points of view ... but is sharing her point of view.

Nope, you're not misunderstanding anybody.

>

> P.P.S. - And who may still be light years away from " acceptance " .

I don't think acceptance necessarily implies that you would decide to forgo

a cure. Acceptance, I think, is only the place where you can stop mourning

and start living and moving forward. HOW you live and move forward varies

from person to person.

I think whether or not you'd take the magic cure depends a LOT on how

impaired by autism you feel your child is. For example, I am one of those

people who would NOT accept the cure, choosing instead to leave exactly

how he is. But my child is incredibly high-functioning.

I never used to understand how someone would WANT to take autism away from

their child UNTIL I went to an autism conference and met parents of children

far more affected in their daily lives than , children who couldn't seem

to function in our world. Talking to those parents, I came to understand

that for some children the magic cure would be something wonderful and

amazing, and the very best thing for them.

I used to feel judgemental about parents who would use a cure, but now I see

there's no area of right or wrong here -- there's only the potential of the

child and his or her ability to fulfil that potential.

For you and I, you can see the difference by our phrasing: you described

autism as a curtain shutting Jordan off from the world, one he can sometimes

pull back and peek through. I see 's autism as a filter the world goes

through to get to him. It's obvious there that our two kids are affected in

two very different ways! If we traded kids, you might leave the same,

and I might wave a magic wand over Jordan - you just never know. :-)

Jacquie

[Guest guest]

> Am I the only person who would give my child the cure in an instant, if

> it existed?

>

Nope! There's a whole organization out there called " Cure Autism Now " !

You're definitely not alone.

> P.S. - Who may be misunderstanding what people are saying ... and is not

> condemning their points of view ... but is sharing her point of view.

Nope, you're not misunderstanding anybody.

>

> P.P.S. - And who may still be light years away from " acceptance " .

I don't think acceptance necessarily implies that you would decide to forgo

a cure. Acceptance, I think, is only the place where you can stop mourning

and start living and moving forward. HOW you live and move forward varies

from person to person.

I think whether or not you'd take the magic cure depends a LOT on how

impaired by autism you feel your child is. For example, I am one of those

people who would NOT accept the cure, choosing instead to leave exactly

how he is. But my child is incredibly high-functioning.

I never used to understand how someone would WANT to take autism away from

their child UNTIL I went to an autism conference and met parents of children

far more affected in their daily lives than , children who couldn't seem

to function in our world. Talking to those parents, I came to understand

that for some children the magic cure would be something wonderful and

amazing, and the very best thing for them.

I used to feel judgemental about parents who would use a cure, but now I see

there's no area of right or wrong here -- there's only the potential of the

child and his or her ability to fulfil that potential.

For you and I, you can see the difference by our phrasing: you described

autism as a curtain shutting Jordan off from the world, one he can sometimes

pull back and peek through. I see 's autism as a filter the world goes

through to get to him. It's obvious there that our two kids are affected in

two very different ways! If we traded kids, you might leave the same,

and I might wave a magic wand over Jordan - you just never know. :-)

Jacquie

[Guest guest]

--- In parenting_autism , " Sissi Garvey " <sgarvey@t...>

>

> I should have just ditto-ed this post and kept my mouth shut.

>

> Sissi

No, you should never do this Sissi. You have important things to say

and I among many, appreciate your writing talent. Never shut up.

:-)

~ Karin

[Guest guest]

>

> I want to see 's eyes sparkle like they used to.

>

> Tina

I definitely think that makes a difference to the hope for a cure, too --

whether or not your child 'vanished'. has been the way he is since the

day he was born. I cannot IMAGINE what it feels like to watch a child fade

into a different child. My heart breaks at the thought.

Jacquie

[Guest guest]

>

> I want to see 's eyes sparkle like they used to.

>

> Tina

I definitely think that makes a difference to the hope for a cure, too --

whether or not your child 'vanished'. has been the way he is since the

day he was born. I cannot IMAGINE what it feels like to watch a child fade

into a different child. My heart breaks at the thought.

Jacquie

[Guest guest]

>

> I want to see 's eyes sparkle like they used to.

>

> Tina

I definitely think that makes a difference to the hope for a cure, too --

whether or not your child 'vanished'. has been the way he is since the

day he was born. I cannot IMAGINE what it feels like to watch a child fade

into a different child. My heart breaks at the thought.

Jacquie

[Guest guest]

> I watched my little boy slip away...at first bit by bit, and then

> like falling off a cliff...autism is something that took away

> from us.

This just breaks my heart. I can't understand how it feels, because that's

not the way it happened for us - but the idea of it fills me with fear and

with sadness.

I've always felt lucky because I never got a glimpse of being any other

way than it is now. I think it's easier not to feel you've lost something

when you never saw it go.

So often I've read descriptions just like yours, Raena - of parents seeing

their child 'slip away from them' and into something else. Try as I might

to imagine such a thing, I just can't - and I think it's terror that stops

me from being able to do it.

That's one reason why I learned to accept that while I might never want to

cure , others feel very differently - and with good reason. It seems to

me there are two groups of autistic kids: those who were born that way, and

those for whom autism is something that invaded them. From where I sit, it

seems to me that life is MUCH harder for families in the second group,

families who have lost more than dreams and hopes - families who have lost a

part of their child's life that used to be there, that was more than dreams

and hopes - that was a reality.

I know you love like nothing else on earth, just as I love . But

I also know that your journey is more difficult than mine, and for that I

feel sad. If I could never wish cured (my first choice) I would at

least wish him to have been autistic from birth, to have grown up with a

filter of autism rather than having been surrounded by it later and without

warning.

Does this sound stupid? I don't mean it to. It's just that the idea of

watching your child slip away is such a frightening thing to me, and I wish

I could make it so that noone had to see that, even if that meant walking

our path instead of the NT path.

I fear I'm making a terrible mess of this post. I FEEL empathy, but I'm not

very good at expressing it, so I'll sign off here and hope you've read this

seeing the good faith in which the whole thing has been intended.

Jacquie

[Guest guest]

> I watched my little boy slip away...at first bit by bit, and then

> like falling off a cliff...autism is something that took away

> from us.

This just breaks my heart. I can't understand how it feels, because that's

not the way it happened for us - but the idea of it fills me with fear and

with sadness.

I've always felt lucky because I never got a glimpse of being any other

way than it is now. I think it's easier not to feel you've lost something

when you never saw it go.

So often I've read descriptions just like yours, Raena - of parents seeing

their child 'slip away from them' and into something else. Try as I might

to imagine such a thing, I just can't - and I think it's terror that stops

me from being able to do it.

That's one reason why I learned to accept that while I might never want to

cure , others feel very differently - and with good reason. It seems to

me there are two groups of autistic kids: those who were born that way, and

those for whom autism is something that invaded them. From where I sit, it

seems to me that life is MUCH harder for families in the second group,

families who have lost more than dreams and hopes - families who have lost a

part of their child's life that used to be there, that was more than dreams

and hopes - that was a reality.

I know you love like nothing else on earth, just as I love . But

I also know that your journey is more difficult than mine, and for that I

feel sad. If I could never wish cured (my first choice) I would at

least wish him to have been autistic from birth, to have grown up with a

filter of autism rather than having been surrounded by it later and without

warning.

Does this sound stupid? I don't mean it to. It's just that the idea of

watching your child slip away is such a frightening thing to me, and I wish

I could make it so that noone had to see that, even if that meant walking

our path instead of the NT path.

I fear I'm making a terrible mess of this post. I FEEL empathy, but I'm not

very good at expressing it, so I'll sign off here and hope you've read this

seeing the good faith in which the whole thing has been intended.

Jacquie

[Guest guest]

> I watched my little boy slip away...at first bit by bit, and then

> like falling off a cliff...autism is something that took away

> from us.

This just breaks my heart. I can't understand how it feels, because that's

not the way it happened for us - but the idea of it fills me with fear and

with sadness.

I've always felt lucky because I never got a glimpse of being any other

way than it is now. I think it's easier not to feel you've lost something

when you never saw it go.

So often I've read descriptions just like yours, Raena - of parents seeing

their child 'slip away from them' and into something else. Try as I might

to imagine such a thing, I just can't - and I think it's terror that stops

me from being able to do it.

That's one reason why I learned to accept that while I might never want to

cure , others feel very differently - and with good reason. It seems to

me there are two groups of autistic kids: those who were born that way, and

those for whom autism is something that invaded them. From where I sit, it

seems to me that life is MUCH harder for families in the second group,

families who have lost more than dreams and hopes - families who have lost a

part of their child's life that used to be there, that was more than dreams

and hopes - that was a reality.

I know you love like nothing else on earth, just as I love . But

I also know that your journey is more difficult than mine, and for that I

feel sad. If I could never wish cured (my first choice) I would at

least wish him to have been autistic from birth, to have grown up with a

filter of autism rather than having been surrounded by it later and without

warning.

Does this sound stupid? I don't mean it to. It's just that the idea of

watching your child slip away is such a frightening thing to me, and I wish

I could make it so that noone had to see that, even if that meant walking

our path instead of the NT path.

I fear I'm making a terrible mess of this post. I FEEL empathy, but I'm not

very good at expressing it, so I'll sign off here and hope you've read this

seeing the good faith in which the whole thing has been intended.

Jacquie

[Guest guest]

>I haven't watched them be a vibrant bubbly child one day and then watch

that child vanish before my eyes. I am just in a different situation than

many here And I have to say I am glad of it because I honestly don't know

how you cope with having a child who won't let you into their world (or I

should say can't let you in). I many times force my way into their world

(my kids) but I get in and that is a major difference beween my situation

and those of parents who have severely affected kids.

>

OMG, Chris! I JUST wrote exactly the same thing!!!

Jacquie