Re: Moving toward dx/good news too

[Guest guest]

Dear All:

Yesterday n had an ST appointment. This is only his second appointment

with this new therapist. She had hoped to spend the next two appointments

evaluating him, but the session did not go well ... it looks like she will

need to build some rapport with n first. So she and I did some talking

to fill her in on n's background. In the course of this conversation

she said:

1. she is amazed that I am the only one who thinks n is on the

spectrum,

2. cannot believe that early intervention turned him down,

3. and would be shocked if he did not receive a dx at his dev ped

appointment this fall

On the one hand, it is extremely gratifying to know that I am not crazy. On

the other hand, it does make my stomach tighten to know that we are, for

real, most probably marching toward an official ASD dx. That this whole

thing is not just some tragic macabre delusion on my part. This may sound

strange, because obviously I come to this list and talk about n in

autistic terms, but ... I have very very very rarely had to use the words

autism and n in the same sentence to the people around me. I have to

tread very lightly with my husband and our family. And because of n's

age and lack of therapies (while we were on a waiting list), it just hasn't

been something I've really had to talk about. And yet in the same week,

I've had to discuss it with our ped and his ST. And I have to admit, the

words get stuck in my mouth. I guess I have been second-guessed and

dismissed on this subject for so long, that I am reluctant to talk about it.

Not only that, but it seems to me, that even with healthcare providers, no

one will mention autism unless I bring it up first. Is the whole world

ASD-phobic?

All that said, I have some really good news to report. Last night I was

meeting with my spiritual. group. As we were breaking for the evening, some

of the women were cooing over Phoebe since I almost always bring her. They

began asking about n and why I don't bring him too (it is a family

friendly function). And I found myself tongue-tied, so I just plunged in

and began explaining about n's situation. It was a scary and

vulnerable moment. I've never discussed these things outside my inner inner

circle. But get this - - they were totally supportive, wanted to meet him,

insisted that I bring him next time, and that they would all help out so he

could be included.

The love and support for our situation was so completely touching and

unexpected. It was a powerful healing moment for the dark clouds that seem

to have settled on my spirit these days, and has reaffirmed my faith that

the profound love of divine origin still flows in earnest. I feel like a

new woman. I have to stop now or I'll start crying again, but for once,

happy tears.

(SAHM in GA)

MSN elizabethloht@...

n 33, mo, no formal dx

Phoebe, 9 wks

[Guest guest]

Dear All:

Yesterday n had an ST appointment. This is only his second appointment

with this new therapist. She had hoped to spend the next two appointments

evaluating him, but the session did not go well ... it looks like she will

need to build some rapport with n first. So she and I did some talking

to fill her in on n's background. In the course of this conversation

she said:

1. she is amazed that I am the only one who thinks n is on the

spectrum,

2. cannot believe that early intervention turned him down,

3. and would be shocked if he did not receive a dx at his dev ped

appointment this fall

On the one hand, it is extremely gratifying to know that I am not crazy. On

the other hand, it does make my stomach tighten to know that we are, for

real, most probably marching toward an official ASD dx. That this whole

thing is not just some tragic macabre delusion on my part. This may sound

strange, because obviously I come to this list and talk about n in

autistic terms, but ... I have very very very rarely had to use the words

autism and n in the same sentence to the people around me. I have to

tread very lightly with my husband and our family. And because of n's

age and lack of therapies (while we were on a waiting list), it just hasn't

been something I've really had to talk about. And yet in the same week,

I've had to discuss it with our ped and his ST. And I have to admit, the

words get stuck in my mouth. I guess I have been second-guessed and

dismissed on this subject for so long, that I am reluctant to talk about it.

Not only that, but it seems to me, that even with healthcare providers, no

one will mention autism unless I bring it up first. Is the whole world

ASD-phobic?

All that said, I have some really good news to report. Last night I was

meeting with my spiritual. group. As we were breaking for the evening, some

of the women were cooing over Phoebe since I almost always bring her. They

began asking about n and why I don't bring him too (it is a family

friendly function). And I found myself tongue-tied, so I just plunged in

and began explaining about n's situation. It was a scary and

vulnerable moment. I've never discussed these things outside my inner inner

circle. But get this - - they were totally supportive, wanted to meet him,

insisted that I bring him next time, and that they would all help out so he

could be included.

The love and support for our situation was so completely touching and

unexpected. It was a powerful healing moment for the dark clouds that seem

to have settled on my spirit these days, and has reaffirmed my faith that

the profound love of divine origin still flows in earnest. I feel like a

new woman. I have to stop now or I'll start crying again, but for once,

happy tears.

(SAHM in GA)

MSN elizabethloht@...

n 33, mo, no formal dx

Phoebe, 9 wks

[Guest guest]

> On the one hand, it is extremely gratifying to know that I am not crazy.

On

> the other hand, it does make my stomach tighten to know that we are, for

> real, most probably marching toward an official ASD dx. That this whole

> thing is not just some tragic macabre delusion on my part. This may sound

> strange

It doesn't sound strange to me. For me, the whole dx thing happened very

fast...within weeks of suspecting autism, had the diagnosis (after

years of searching for 'something'). My first response was vast relief that

I wasn't crazy, that I wasn't a terrible useless mother, that I had been

RIGHT all along. But then I felt terrified, and sad, and angry and cheated.

Having the right answer at last, feeling validated, feeling like you have a

path to walk -- those are great feelings. But there's still a lot of loss

there. Loss of dreams and expectations and hopes that you cling to. It

takes time to realign those hopes and dreams into ones that fit the life you

now have to start living completely.

> Not only that, but it seems to me, that even with healthcare providers, no

> one will mention autism unless I bring it up first. Is the whole world

> ASD-phobic?

>

Yes, I believe it is. Even the woman who pointed me in the right direction

didn't say the word.

And then there's the gut reaction of everyone you tell. " 's autistic. "

" But he doesn't rock in the corner. " " 's autistic. " " No, he can't be.

He'll catch up. " " 's autistic. " " No, he'll talk when he's ready.

You'll see. " " 's autistic. " " But he hugs you. "

And on and on and on.

People are very afraid of the A-word.

>But get this - - they were totally supportive, wanted to meet him,

> insisted that I bring him next time, and that they would all help out so

he

> could be included.

How relieved and loved you must feel!!! That is wonderful. :-)

Jacquie

[Guest guest]

> On the one hand, it is extremely gratifying to know that I am not crazy.

On

> the other hand, it does make my stomach tighten to know that we are, for

> real, most probably marching toward an official ASD dx. That this whole

> thing is not just some tragic macabre delusion on my part. This may sound

> strange

It doesn't sound strange to me. For me, the whole dx thing happened very

fast...within weeks of suspecting autism, had the diagnosis (after

years of searching for 'something'). My first response was vast relief that

I wasn't crazy, that I wasn't a terrible useless mother, that I had been

RIGHT all along. But then I felt terrified, and sad, and angry and cheated.

Having the right answer at last, feeling validated, feeling like you have a

path to walk -- those are great feelings. But there's still a lot of loss

there. Loss of dreams and expectations and hopes that you cling to. It

takes time to realign those hopes and dreams into ones that fit the life you

now have to start living completely.

> Not only that, but it seems to me, that even with healthcare providers, no

> one will mention autism unless I bring it up first. Is the whole world

> ASD-phobic?

>

Yes, I believe it is. Even the woman who pointed me in the right direction

didn't say the word.

And then there's the gut reaction of everyone you tell. " 's autistic. "

" But he doesn't rock in the corner. " " 's autistic. " " No, he can't be.

He'll catch up. " " 's autistic. " " No, he'll talk when he's ready.

You'll see. " " 's autistic. " " But he hugs you. "

And on and on and on.

People are very afraid of the A-word.

>But get this - - they were totally supportive, wanted to meet him,

> insisted that I bring him next time, and that they would all help out so

he

> could be included.

How relieved and loved you must feel!!! That is wonderful. :-)

Jacquie

[Guest guest]

> On the one hand, it is extremely gratifying to know that I am not crazy.

On

> the other hand, it does make my stomach tighten to know that we are, for

> real, most probably marching toward an official ASD dx. That this whole

> thing is not just some tragic macabre delusion on my part. This may sound

> strange

It doesn't sound strange to me. For me, the whole dx thing happened very

fast...within weeks of suspecting autism, had the diagnosis (after

years of searching for 'something'). My first response was vast relief that

I wasn't crazy, that I wasn't a terrible useless mother, that I had been

RIGHT all along. But then I felt terrified, and sad, and angry and cheated.

Having the right answer at last, feeling validated, feeling like you have a

path to walk -- those are great feelings. But there's still a lot of loss

there. Loss of dreams and expectations and hopes that you cling to. It

takes time to realign those hopes and dreams into ones that fit the life you

now have to start living completely.

> Not only that, but it seems to me, that even with healthcare providers, no

> one will mention autism unless I bring it up first. Is the whole world

> ASD-phobic?

>

Yes, I believe it is. Even the woman who pointed me in the right direction

didn't say the word.

And then there's the gut reaction of everyone you tell. " 's autistic. "

" But he doesn't rock in the corner. " " 's autistic. " " No, he can't be.

He'll catch up. " " 's autistic. " " No, he'll talk when he's ready.

You'll see. " " 's autistic. " " But he hugs you. "

And on and on and on.

People are very afraid of the A-word.

>But get this - - they were totally supportive, wanted to meet him,

> insisted that I bring him next time, and that they would all help out so

he

> could be included.

How relieved and loved you must feel!!! That is wonderful. :-)

Jacquie

[Guest guest]

I remember the begining of it qall. The wondering what was going on with

Greggiory and then trying to find answers and nothing seemed to fit. The crying

because I really thought it was me. Then the hounding of drs to make them listen

to me and getting a dx. We didnt want to tell anyone. Not because we were

ashamed but it was too raw. We dint know how people would react. Then some were

great and some were awful with the way they handled it. It was a buncxh of ups

and downs and crying. And Alec was just a small baby. I felt like I ignored him.

I still feel some guilt about that. But anyway, cry away. It helps. Good tears ,

sad tears, it all helps.

Jacquie H

Re: Moving toward dx/good news too

Dear All:

Yesterday n had an ST appointment. This is only his second appointment

with this new therapist. She had hoped to spend the next two appointments

evaluating him, but the session did not go well ... it looks like she will

need to build some rapport with n first. So she and I did some talking

to fill her in on n's background. In the course of this conversation

she said:

1. she is amazed that I am the only one who thinks n is on the

spectrum,

2. cannot believe that early intervention turned him down,

3. and would be shocked if he did not receive a dx at his dev ped

appointment this fall

On the one hand, it is extremely gratifying to know that I am not crazy. On

the other hand, it does make my stomach tighten to know that we are, for

real, most probably marching toward an official ASD dx. That this whole

thing is not just some tragic macabre delusion on my part. This may sound

strange, because obviously I come to this list and talk about n in

autistic terms, but ... I have very very very rarely had to use the words

autism and n in the same sentence to the people around me. I have to

tread very lightly with my husband and our family. And because of n's

age and lack of therapies (while we were on a waiting list), it just hasn't

been something I've really had to talk about. And yet in the same week,

I've had to discuss it with our ped and his ST. And I have to admit, the

words get stuck in my mouth. I guess I have been second-guessed and

dismissed on this subject for so long, that I am reluctant to talk about it.

Not only that, but it seems to me, that even with healthcare providers, no

one will mention autism unless I bring it up first. Is the whole world

ASD-phobic?

All that said, I have some really good news to report. Last night I was

meeting with my spiritual. group. As we were breaking for the evening, some

of the women were cooing over Phoebe since I almost always bring her. They

began asking about n and why I don't bring him too (it is a family

friendly function). And I found myself tongue-tied, so I just plunged in

and began explaining about n's situation. It was a scary and

vulnerable moment. I've never discussed these things outside my inner inner

circle. But get this - - they were totally supportive, wanted to meet him,

insisted that I bring him next time, and that they would all help out so he

could be included.

The love and support for our situation was so completely touching and

unexpected. It was a powerful healing moment for the dark clouds that seem

to have settled on my spirit these days, and has reaffirmed my faith that

the profound love of divine origin still flows in earnest. I feel like a

new woman. I have to stop now or I'll start crying again, but for once,

happy tears.

(SAHM in GA)

MSN elizabethloht@...

n 33, mo, no formal dx

Phoebe, 9 wks

[Guest guest]

>>>>>>>>

And then there's the gut reaction of everyone you tell. " 's autistic. "

" But he doesn't rock in the corner. " " 's autistic. " " No, he can't be.

He'll catch up. " " 's autistic. " " No, he'll talk when he's ready.

You'll see. " " 's autistic. " " But he hugs you. "

<<<<<<<<

" He'll catch up. " yep. My personal favorite.

*sigh*

penny

[Guest guest]

>>>>>>>>

And then there's the gut reaction of everyone you tell. " 's autistic. "

" But he doesn't rock in the corner. " " 's autistic. " " No, he can't be.

He'll catch up. " " 's autistic. " " No, he'll talk when he's ready.

You'll see. " " 's autistic. " " But he hugs you. "

<<<<<<<<

" He'll catch up. " yep. My personal favorite.

*sigh*

penny

[Guest guest]

>>>>>>>>

And then there's the gut reaction of everyone you tell. " 's autistic. "

" But he doesn't rock in the corner. " " 's autistic. " " No, he can't be.

He'll catch up. " " 's autistic. " " No, he'll talk when he's ready.

You'll see. " " 's autistic. " " But he hugs you. "

<<<<<<<<

" He'll catch up. " yep. My personal favorite.

*sigh*

penny

[Guest guest]

I used to have this problem -- somewhat. Usually from family members and

friends. But occasionally from a stranger or mild acquaintance.

Nobody argues now. In fact, those who are interested just stare at him in

amazement while asking me questions about autism.

Sissi

[Guest guest]

I used to have this problem -- somewhat. Usually from family members and

friends. But occasionally from a stranger or mild acquaintance.

Nobody argues now. In fact, those who are interested just stare at him in

amazement while asking me questions about autism.

Sissi

[Guest guest]

I used to have this problem -- somewhat. Usually from family members and

friends. But occasionally from a stranger or mild acquaintance.

Nobody argues now. In fact, those who are interested just stare at him in

amazement while asking me questions about autism.

Sissi