RE: what is the future for our kids?

[Guest guest]

In a message dated 1/16/03 1:02:36 PM Eastern Standard Time,

elizabeth.loht@... writes:

> Have I asked the forbidden question?

>

no forbidden just one that I push to the back of my head. Horrible anxiety

attack again today so I think I'll pass.

[Guest guest]

In a message dated 1/16/03 1:02:36 PM Eastern Standard Time,

elizabeth.loht@... writes:

> Have I asked the forbidden question?

>

no forbidden just one that I push to the back of my head. Horrible anxiety

attack again today so I think I'll pass.

[Guest guest]

In a message dated 1/16/03 1:02:36 PM Eastern Standard Time,

elizabeth.loht@... writes:

> Have I asked the forbidden question?

>

no forbidden just one that I push to the back of my head. Horrible anxiety

attack again today so I think I'll pass.

[Guest guest]

I have a question that I want to ask. I am sort of new to all of this, and

what I want to know is: what happens to autistic kids in the long run?

Assisted work programs ala Salvation Army? living at home? group houses with

semi-independent living? institutions? ....

My heart has been heavy for some time now. I need to come to grips with

this. I know we are all taking it one day at a time. But does it ever end?

When I'm 80 will I still be struggling to care for him? At the risk of

sounding melodramatic, am I going to my deadbed wondering what will become

of my child? Can even the greatest legacy of wealth and legal provisions

really ensure any security for my son beyond my own personal supervision?

I feel awful even bringing any of this up. It all seems so grim. The last

thing I want to do is infect this list with my own negativity ...

<sigh>

[Guest guest]

I have a question that I want to ask. I am sort of new to all of this, and

what I want to know is: what happens to autistic kids in the long run?

Assisted work programs ala Salvation Army? living at home? group houses with

semi-independent living? institutions? ....

My heart has been heavy for some time now. I need to come to grips with

this. I know we are all taking it one day at a time. But does it ever end?

When I'm 80 will I still be struggling to care for him? At the risk of

sounding melodramatic, am I going to my deadbed wondering what will become

of my child? Can even the greatest legacy of wealth and legal provisions

really ensure any security for my son beyond my own personal supervision?

I feel awful even bringing any of this up. It all seems so grim. The last

thing I want to do is infect this list with my own negativity ...

<sigh>

[Guest guest]

I have a question that I want to ask. I am sort of new to all of this, and

what I want to know is: what happens to autistic kids in the long run?

Assisted work programs ala Salvation Army? living at home? group houses with

semi-independent living? institutions? ....

My heart has been heavy for some time now. I need to come to grips with

this. I know we are all taking it one day at a time. But does it ever end?

When I'm 80 will I still be struggling to care for him? At the risk of

sounding melodramatic, am I going to my deadbed wondering what will become

of my child? Can even the greatest legacy of wealth and legal provisions

really ensure any security for my son beyond my own personal supervision?

I feel awful even bringing any of this up. It all seems so grim. The last

thing I want to do is infect this list with my own negativity ...

<sigh>

[Guest guest]

Have I asked the forbidden question?

[Guest guest]

Have I asked the forbidden question?

[Guest guest]

Have I asked the forbidden question?

[Guest guest]

> what happens to autistic kids in the long run? Assisted work programs ala

Salvation Army? living at home? group houses with

semi-independent living? institutions? .... <

any and all of these things, plus more. there is no way anyone can know what

will happen in the future. you just have to take one day at a time and hope for

the best.

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

[Guest guest]

> what happens to autistic kids in the long run? Assisted work programs ala

Salvation Army? living at home? group houses with

semi-independent living? institutions? .... <

any and all of these things, plus more. there is no way anyone can know what

will happen in the future. you just have to take one day at a time and hope for

the best.

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

[Guest guest]

> what happens to autistic kids in the long run? Assisted work programs ala

Salvation Army? living at home? group houses with

semi-independent living? institutions? .... <

any and all of these things, plus more. there is no way anyone can know what

will happen in the future. you just have to take one day at a time and hope for

the best.

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

[Guest guest]

It's something I've thought about, but try not to dwell on. Hopefully there

will be major advances in the treatment of autism, and these kids will be

able to function independently with minimal supervision when they are

adults. All we can really do is take it one day at a time, and do what we

can to prepare them to take care of themselves as best THEY can.

ellen

Re: what is the future for our kids?

I have a question that I want to ask. I am sort of new to all of this,

and

what I want to know is: what happens to autistic kids in the long run?

Assisted work programs ala Salvation Army? living at home? group houses

with

semi-independent living? institutions? ....

My heart has been heavy for some time now. I need to come to grips with

this. I know we are all taking it one day at a time. But does it ever

end?

When I'm 80 will I still be struggling to care for him? At the risk of

sounding melodramatic, am I going to my deadbed wondering what will become

of my child? Can even the greatest legacy of wealth and legal provisions

really ensure any security for my son beyond my own personal supervision?

I feel awful even bringing any of this up. It all seems so grim. The

last

thing I want to do is infect this list with my own negativity ...

<sigh>

[Guest guest]

It's something I've thought about, but try not to dwell on. Hopefully there

will be major advances in the treatment of autism, and these kids will be

able to function independently with minimal supervision when they are

adults. All we can really do is take it one day at a time, and do what we

can to prepare them to take care of themselves as best THEY can.

ellen

Re: what is the future for our kids?

I have a question that I want to ask. I am sort of new to all of this,

and

what I want to know is: what happens to autistic kids in the long run?

Assisted work programs ala Salvation Army? living at home? group houses

with

semi-independent living? institutions? ....

My heart has been heavy for some time now. I need to come to grips with

this. I know we are all taking it one day at a time. But does it ever

end?

When I'm 80 will I still be struggling to care for him? At the risk of

sounding melodramatic, am I going to my deadbed wondering what will become

of my child? Can even the greatest legacy of wealth and legal provisions

really ensure any security for my son beyond my own personal supervision?

I feel awful even bringing any of this up. It all seems so grim. The

last

thing I want to do is infect this list with my own negativity ...

<sigh>

[Guest guest]

It's something I've thought about, but try not to dwell on. Hopefully there

will be major advances in the treatment of autism, and these kids will be

able to function independently with minimal supervision when they are

adults. All we can really do is take it one day at a time, and do what we

can to prepare them to take care of themselves as best THEY can.

ellen

Re: what is the future for our kids?

I have a question that I want to ask. I am sort of new to all of this,

and

what I want to know is: what happens to autistic kids in the long run?

Assisted work programs ala Salvation Army? living at home? group houses

with

semi-independent living? institutions? ....

My heart has been heavy for some time now. I need to come to grips with

this. I know we are all taking it one day at a time. But does it ever

end?

When I'm 80 will I still be struggling to care for him? At the risk of

sounding melodramatic, am I going to my deadbed wondering what will become

of my child? Can even the greatest legacy of wealth and legal provisions

really ensure any security for my son beyond my own personal supervision?

I feel awful even bringing any of this up. It all seems so grim. The

last

thing I want to do is infect this list with my own negativity ...

<sigh>

[Guest guest]

>

>

> I have a question that I want to ask. I am sort of new to all of

this, and

> what I want to know is: what happens to autistic kids in the long

run?

> Assisted work programs ala Salvation Army? living at home? group

houses with

> semi-independent living? institutions? ....

>

this is probably the part that nags me the most. If he could stay 7

and a cutie pie forever it might almost be easier.

I do wonder. I am so hoping that Mitchel continue to make the strides

he has. I'm am hopeful he'll be able to hold a job, and perhaps have

a very understanding employer. But I worry. loves to talk of

retirement (ok, we're only in our early 30's, but we can dream) I

always wonder if Mitchel will be part of those plans or not. Even if

he's got a job or lives away from us, will I still be needed to make

sure bills get paid, he gets to work, etc? how self sufficient can I

expect him to be?

I guess I just deal with it by focusing on TODAY and right now.

Getting him prepared for 'someday' is all I can do now. I am hoping

for the best and brightest future. BUt I also have to prepare myself

for 'if that doesn't happen'.

It's a very hard thing to think about.

I can't even let myself think about, if something were to happen to

me and scott, especially if we were young, and what would happen to

Mitchel, who would care for him? I shudder and Can't go there. And

pray that I'm always there for him.

Kerri

[Guest guest]

>

>

> I have a question that I want to ask. I am sort of new to all of

this, and

> what I want to know is: what happens to autistic kids in the long

run?

> Assisted work programs ala Salvation Army? living at home? group

houses with

> semi-independent living? institutions? ....

>

this is probably the part that nags me the most. If he could stay 7

and a cutie pie forever it might almost be easier.

I do wonder. I am so hoping that Mitchel continue to make the strides

he has. I'm am hopeful he'll be able to hold a job, and perhaps have

a very understanding employer. But I worry. loves to talk of

retirement (ok, we're only in our early 30's, but we can dream) I

always wonder if Mitchel will be part of those plans or not. Even if

he's got a job or lives away from us, will I still be needed to make

sure bills get paid, he gets to work, etc? how self sufficient can I

expect him to be?

I guess I just deal with it by focusing on TODAY and right now.

Getting him prepared for 'someday' is all I can do now. I am hoping

for the best and brightest future. BUt I also have to prepare myself

for 'if that doesn't happen'.

It's a very hard thing to think about.

I can't even let myself think about, if something were to happen to

me and scott, especially if we were young, and what would happen to

Mitchel, who would care for him? I shudder and Can't go there. And

pray that I'm always there for him.

Kerri

[Guest guest]

>

>

> I have a question that I want to ask. I am sort of new to all of

this, and

> what I want to know is: what happens to autistic kids in the long

run?

> Assisted work programs ala Salvation Army? living at home? group

houses with

> semi-independent living? institutions? ....

>

this is probably the part that nags me the most. If he could stay 7

and a cutie pie forever it might almost be easier.

I do wonder. I am so hoping that Mitchel continue to make the strides

he has. I'm am hopeful he'll be able to hold a job, and perhaps have

a very understanding employer. But I worry. loves to talk of

retirement (ok, we're only in our early 30's, but we can dream) I

always wonder if Mitchel will be part of those plans or not. Even if

he's got a job or lives away from us, will I still be needed to make

sure bills get paid, he gets to work, etc? how self sufficient can I

expect him to be?

I guess I just deal with it by focusing on TODAY and right now.

Getting him prepared for 'someday' is all I can do now. I am hoping

for the best and brightest future. BUt I also have to prepare myself

for 'if that doesn't happen'.

It's a very hard thing to think about.

I can't even let myself think about, if something were to happen to

me and scott, especially if we were young, and what would happen to

Mitchel, who would care for him? I shudder and Can't go there. And

pray that I'm always there for him.

Kerri

[Guest guest]

>

>

> I have a question that I want to ask. I am sort of new to all of

this, and

> what I want to know is: what happens to autistic kids in the long run?

> Assisted work programs ala Salvation Army? living at home? group

houses with

> semi-independent living? institutions? ....

>

I'm pretty new too, and this is one of my biggies as well.

I'm starting to relax more about it. At first everything I read

suggested to me the things you are mentioning above.. group housing,

etc. But, I have to say that I think these projections may be getting

a bit outdated. We live in a very high-tech area of the country and a

couple of people at different times have said to me (one is the

in-home trainer for parents of Autistic kids, another one was a

Special Ed teacher) Anyway, they both said that " You know a lot of

Autistic people, you just don't know they are Autistic. " I think a

lot of ASD people do learn to adapt to the NT world as best they can

and find their niche in it and may even perhaps be helping to change

the thinking of the " NT world " to adapt to ASD behaviors and thinking.

One of the people I mentioned was telling me that we have a high

concentration of adult Autistics here because we are such a computer

oriented city (Austin, TX). Apparently they live in among " the rest

of us " and function just like we do. Holding jobs, apartments, buying

groceries, etc. Amazing!!! ;-) They are probably just a lot more

routine and organized about it! They are probably pretty annoyed with

a lot of NT things (the way Putter is described by Salli) but they put

up with it and do their own thing anyway.

As more and more kids are being diagnosed, more research is being

done, more programs are being instituted to teach life skills, and

probably more governmental programs put in place to help them along in

life. I really do have a much more positive outlook then when I first

began this journey.

Well, who knows, but that's what I think. :-)

Did anybody else catch 60 Minutes segment last night about the Autism

teaching program? Pretty interesting!

~ Karin

[Guest guest]

>

>

> I have a question that I want to ask. I am sort of new to all of

this, and

> what I want to know is: what happens to autistic kids in the long run?

> Assisted work programs ala Salvation Army? living at home? group

houses with

> semi-independent living? institutions? ....

>

I'm pretty new too, and this is one of my biggies as well.

I'm starting to relax more about it. At first everything I read

suggested to me the things you are mentioning above.. group housing,

etc. But, I have to say that I think these projections may be getting

a bit outdated. We live in a very high-tech area of the country and a

couple of people at different times have said to me (one is the

in-home trainer for parents of Autistic kids, another one was a

Special Ed teacher) Anyway, they both said that " You know a lot of

Autistic people, you just don't know they are Autistic. " I think a

lot of ASD people do learn to adapt to the NT world as best they can

and find their niche in it and may even perhaps be helping to change

the thinking of the " NT world " to adapt to ASD behaviors and thinking.

One of the people I mentioned was telling me that we have a high

concentration of adult Autistics here because we are such a computer

oriented city (Austin, TX). Apparently they live in among " the rest

of us " and function just like we do. Holding jobs, apartments, buying

groceries, etc. Amazing!!! ;-) They are probably just a lot more

routine and organized about it! They are probably pretty annoyed with

a lot of NT things (the way Putter is described by Salli) but they put

up with it and do their own thing anyway.

As more and more kids are being diagnosed, more research is being

done, more programs are being instituted to teach life skills, and

probably more governmental programs put in place to help them along in

life. I really do have a much more positive outlook then when I first

began this journey.

Well, who knows, but that's what I think. :-)

Did anybody else catch 60 Minutes segment last night about the Autism

teaching program? Pretty interesting!

~ Karin

[Guest guest]

>

>

> I have a question that I want to ask. I am sort of new to all of

this, and

> what I want to know is: what happens to autistic kids in the long run?

> Assisted work programs ala Salvation Army? living at home? group

houses with

> semi-independent living? institutions? ....

>

I'm pretty new too, and this is one of my biggies as well.

I'm starting to relax more about it. At first everything I read

suggested to me the things you are mentioning above.. group housing,

etc. But, I have to say that I think these projections may be getting

a bit outdated. We live in a very high-tech area of the country and a

couple of people at different times have said to me (one is the

in-home trainer for parents of Autistic kids, another one was a

Special Ed teacher) Anyway, they both said that " You know a lot of

Autistic people, you just don't know they are Autistic. " I think a

lot of ASD people do learn to adapt to the NT world as best they can

and find their niche in it and may even perhaps be helping to change

the thinking of the " NT world " to adapt to ASD behaviors and thinking.

One of the people I mentioned was telling me that we have a high

concentration of adult Autistics here because we are such a computer

oriented city (Austin, TX). Apparently they live in among " the rest

of us " and function just like we do. Holding jobs, apartments, buying

groceries, etc. Amazing!!! ;-) They are probably just a lot more

routine and organized about it! They are probably pretty annoyed with

a lot of NT things (the way Putter is described by Salli) but they put

up with it and do their own thing anyway.

As more and more kids are being diagnosed, more research is being

done, more programs are being instituted to teach life skills, and

probably more governmental programs put in place to help them along in

life. I really do have a much more positive outlook then when I first

began this journey.

Well, who knows, but that's what I think. :-)

Did anybody else catch 60 Minutes segment last night about the Autism

teaching program? Pretty interesting!

~ Karin

[Guest guest]

This question was brought up not that long ago. So I guess it's on a

lot of our minds.

My hope is that Jordan will be able to live independently. That's my

dream. That he'll be a quirky, " eccentric " man who holds a well paying

job, has a home (the walls will probably be entirely bookshelves floor

to ceiling, lol), and maybe even a spouse.

My downside vision is that he will live in some sort of group home

nearby (to me or to his twin sister), he'll work in an adaptive

environment, and have a satisfying, happy life.

I don't intend for Jordan to live with me for the rest of my life. When

I first got his diagnosis, that was my horror ... that I'd be 80 years

old and still caring for my 50 year old autistic kid. After the initial

shock wore off, I did some thinking about it. And I decided in my own

mind, that someday Jordan will need to " leave the nest " . It's a natural

progression for any child, and he should be allowed & encouraged to

pursue as much independence as he is capable of achieving. Also, I

would rather be alive & help him transition to " his own place " ... than

to have him live home until the day I die & then he loses his mother &

his home in one jarring shot.

Of course, who knows what life will hold in the future. My son is only

2.5 years old. I have at least 15.5 more years before I even have to

worry about it. So, for now, I'm not thinking beyond " someday he'll

move out somewhere " ... and working to prepare him for that. Which is

our jobs as parents, whether we have NT or Spectrum kids.

Hopefully, my perspective will help your gloom a bit. I've been where

you are, and deciding this (above) is what helped me move beyond it.

Debbie

[Guest guest]

>

>

> I have a question that I want to ask. I am sort of new to all of

this, and what I want to know is: what happens to autistic kids in

the long run? Assisted work programs ala Salvation Army? living at

home? group houses with

> semi-independent living? institutions? ....

Wow, that's practically impossible to answer. So much depends on the

child. I'm sure most of the other ladies could tell you that this is

something I've been worried about for some times and that I tend to

be very negative about it. But isn't just autistic, she's also

mentally handicapped with an IQ of less than 60. I pray that she will

improve, I hope for the best but at the moment, I see her in some

sort of assisted living. I don't see how she'll ever be able to

handle money and some self-care issues. She'll live with me as long

as she needs to and I'm able, then if her brother or sister aren't up

to taking her, she'll have to go into some sort of assisted living

arrangement.

On the other hand, her brother who I strongly suspect has Aspergers,

should be able to live independently, even get married, hold a job,

care for children...might be a little tough for his wife, but some of

the other members are married to Aspies, so I know it can happen. )

And while we do need to think about these things at times, there is

no way of knowing for sure until we get there. I know NT adults who

can't seem to be able to care for themselves and get into drugs or

drinking and can't hold jobs. I look at it this way, I do the best I

can for and (Sami too) but that is all I can do. I can't

predict their future any more than I can change their past.

There is reason to hope, there is reason to dream. None of us know

how far our children will go. Not even our NT ones.

I'm sure that didn't help a damned bit, but that's my take on things.

Tina

[Guest guest]

> And I decided in my own mind, that someday Jordan will need

to " leave the nest " . It's a natural progression for any child, and

he should be allowed & encouraged to pursue as much independence as

he is capable of achieving. Also, I would rather be alive & help him

transition to " his own place " ... than to have him live home until

the day I die & then he loses his mother & his home in one jarring

shot.

>

You worded this so much better than I did. This is how I see 's

future. She can live with me for as long as I'm able, but as I get

older, I do want to find a place for her so that she doesn't lose

both mother and home at the same time. However, wants to be NT.

She thinks she is most of the time. She wants a home, a husband, and

a family. I don't think she has a real clear understanding of what it

means to have a family, I think she just wants it because that's what

people around her have done and she can't imagine anything different.

If as she gets older, we are able to find a suitable arrangement for

her, I'm not the least bit opposed to her living outside of my home.

I want her to be as independent as possible. Unfortunately, the

assisted living options are EXTREMELY limited in my county. I will

probably put her on the waiting list when she turns 18 just because

it may be 20 years before she gets a placement.

Tina

[Guest guest]

> And I decided in my own mind, that someday Jordan will need

to " leave the nest " . It's a natural progression for any child, and

he should be allowed & encouraged to pursue as much independence as

he is capable of achieving. Also, I would rather be alive & help him

transition to " his own place " ... than to have him live home until

the day I die & then he loses his mother & his home in one jarring

shot.

>

You worded this so much better than I did. This is how I see 's

future. She can live with me for as long as I'm able, but as I get

older, I do want to find a place for her so that she doesn't lose

both mother and home at the same time. However, wants to be NT.

She thinks she is most of the time. She wants a home, a husband, and

a family. I don't think she has a real clear understanding of what it

means to have a family, I think she just wants it because that's what

people around her have done and she can't imagine anything different.

If as she gets older, we are able to find a suitable arrangement for

her, I'm not the least bit opposed to her living outside of my home.

I want her to be as independent as possible. Unfortunately, the

assisted living options are EXTREMELY limited in my county. I will

probably put her on the waiting list when she turns 18 just because

it may be 20 years before she gets a placement.

Tina