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

January 6, 2003

Hi

I know exactly where you are coming from.

I wouldn't change a single thing, she wouldn't be Liesel without ASD

and if somebody took it away tomorrow we would lose our daughter.

All of this makes her who she is and it is what gives her, her place

in society.

This poem just really touched me because I could identify with it!

We had the " I am sorry " too for what???

No...it is a struggle all round every day but I wouldn't swap a

second of it.

Of course there are lots of things I wished she wouldn't do...but

then I could say that about everybody I know.

Louisa

> When Sully and Trevayne first got their diagnosis, I heard a lot

of " I'm sorry " from the people whom I told. The thing was, I didn't

see anything to be sorry about. I know that my boys will have

greater challenges than their peers in many ways. Just living in a

world that often times doesn't make sense to them is a challenge but

life is full of challenges an AS is just one.

> When I would hear " I am so sorry " I would look that person square

in the eyes (which is as hard for me to do as it is for them) and

reply: " I'm not. They have Asperger's. They have brown eyes. AS

is part of them just like their eye color. I wouldn't change them

for the world. " And I wouldn't. I have been asked on occasion if

I was presented a cure for AS would use it for the boys. Sure it

breaks my heart sometimes when I see them struggling with things

that their peers take for granted but to take away their AS would

take away who they are. With out a doubt I could not do that. Some

of their greatest qualities are the very same qualities that lead

them to the diagnosis. My boys will do great things not despite

their AS not even because of it but because they are great. They

will make their mark and though they not become famous or rich, the

lives that they touch will be all the brighter because of them.

Yes, my boys will do great things. Chris

January 6, 2003

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

it existed?

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

How could I choose to keep him wrapped in a cocoon?

Debbie

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.

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

January 6, 2003

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

it existed?

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

How could I choose to keep him wrapped in a cocoon?

Debbie

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.

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

January 6, 2003

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

it existed?

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

How could I choose to keep him wrapped in a cocoon?

Debbie

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.

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

January 6, 2003

If this makes sense at all, I'd like to just relieve his stress around other

children, but everything else, I'd leave the same, even the lack of

language, the spinning, etc. I love everything about this child, but I

would just like him to enjoy childhood more, without the fear or anxiety. I

don't want to change it for me, I want to change it for him.

ellen

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January 6, 2003

If this makes sense at all, I'd like to just relieve his stress around other

children, but everything else, I'd leave the same, even the lack of

language, the spinning, etc. I love everything about this child, but I

would just like him to enjoy childhood more, without the fear or anxiety. I

don't want to change it for me, I want to change it for him.

ellen

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January 6, 2003

If this makes sense at all, I'd like to just relieve his stress around other

children, but everything else, I'd leave the same, even the lack of

language, the spinning, etc. I love everything about this child, but I

would just like him to enjoy childhood more, without the fear or anxiety. I

don't want to change it for me, I want to change it for him.

ellen

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Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.435 / Virus Database: 244 - Release Date: 12/30/2002

January 6, 2003

> 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

Precisely what I was going to say.

If I could take away the bad parts, and leave the good parts, and still have

the child I know and love -- well, I think I just said it.

-Sara.

January 6, 2003

> 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

Precisely what I was going to say.

If I could take away the bad parts, and leave the good parts, and still have

the child I know and love -- well, I think I just said it.

-Sara.

January 6, 2003

> 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

Precisely what I was going to say.

If I could take away the bad parts, and leave the good parts, and still have

the child I know and love -- well, I think I just said it.

-Sara.

January 6, 2003

> I would just like him to enjoy childhood more, without the fear or anxiety. I

don't want to change it for me, I want to change it for him.

ellen <

maryellen, that's EXACTLY the reason i finally decided to get her on meds. when

it came to the point where she was too paranoid to leave the house, i knew

something had to be done and i am SO glad i did.

" Something important to remember...we'll always be who we are. " - Mr.

January 6, 2003

> I would just like him to enjoy childhood more, without the fear or anxiety. I

don't want to change it for me, I want to change it for him.

ellen <

maryellen, that's EXACTLY the reason i finally decided to get her on meds. when

it came to the point where she was too paranoid to leave the house, i knew

something had to be done and i am SO glad i did.

" Something important to remember...we'll always be who we are. " - Mr.

January 6, 2003

> I would just like him to enjoy childhood more, without the fear or anxiety. I

don't want to change it for me, I want to change it for him.

ellen <

maryellen, that's EXACTLY the reason i finally decided to get her on meds. when

it came to the point where she was too paranoid to leave the house, i knew

something had to be done and i am SO glad i did.

" Something important to remember...we'll always be who we are. " - Mr.

January 6, 2003

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.

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. Then that was it. I went on. After Trevayne was dx, I went

into a depression which was pretty severe for about six weeks, then one day I

decided that for me (and I am speaking from my experience only which may be very

different from everyone else) the longer I wallowed in my depression was one

more day I was not doing all I could for my son(s). From that point on I moved

on. I can't ask myself what it would be like if they were " normal " They will

never be like what society calls normal but I do beleive with all my heart that

they will be successful and have fullfilling lives. I have to focus on the

positive or I will be overwhelmed and I can't allow that. I do have days when

my heart breaks for them I won't say that I look at life through rose colored

glasses not by any strech of the imagination (that's why I take the little blue

pills) but this is one area where I must move forward for me and for them.

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.

My kids too are high functioning. Perhaps if they were not I would want that

cure too. Thankfully I am not in the position to say that I wish they weren't

the way they are.

I see 's autism as a filter the world goes

through to get to him.

Exactly that is how I would decribe my kids as well.

January 6, 2003