Re: Older Kids VS. Newer Patients...It will be okay no matter what....

[Guest guest]

I don't think any of us who have been in this game for a long time have to

apologize for being extremely frustrated. I was told alot of things would

happen, because they could have, but funding was never provided as promised, but

honestly that is the political game in the world of medicine.

Like anything else, its a big game, and you have to know all of the right

players to get someone to fund you, and its a game filled with alot of crafty

players all vyeing for the same limited pot of funds.

Sadly, for those of us that have teenagers that are on the severe end of this

horrible disease, we are not going to experience true recovery. (But there is

always hope.)

Happily for the little guys, with the right immune meds, like the valtrex and

famvir at the point of onset, they have a reall chance of recovery. That is

awesome!

So what do the rest of us do? We need to take care of the lives we have today.

Advocate for services, if there are none, form a non-profit with other like

minded parents, create the programs you need, educational, vocational,

recreational, buy a unviersal life policy so that when you leave the planet,

your child will have enough money to help him live comfortably.

The key for us with older kids, is to get involved, take care of your child

not just today, but for tommorow when you are not here. A group of us parents

did just that, we formed a non-profit and created a summer camp program for

summer long services for teens ages 13 to 19, we created a summer employment

program, we are creating a Saturday Socialization Therapy program, we are

creating a sheltered employment program, and we hope to sell our goods on-line,

and eventually soon, we hope to start small businesses for these wonderful young

persons with Autism.

Even in the midst of great saddness there is always hope. Hope that you can

make things better for your child, and for another. Always hang onto hope, and

have faith that in the end, if you do all of the footwork, your child will be

okay when you leave mother earth.

God Bless.

Cat

<><

isoaa@... wrote:

You are all missing the point here. I am referring to the parents

today who

just

received diagnosis. There is a heck of a lot of INFO out there and more

publicity

about it being a medical condition.

As opposed in the early 90 " s when there was more of a lack of info. Therefore

due to this most of us Older Parents didn't find until our kid was 6, 7

or

older and it is taking 3 or even 4 times the length to make the progress

younger

kids are making.

It frustrates me to hear a " Newbie " say: " oh take notes, do this, do that,

when

in actuality we all do what's best for our kids.

So the people who found before the age of 4 should thank God because

it is by no means LUCK it is because times are better for you than a decade

ago.

I am frankly tired of waiting for Immune Modulating Agents, my kid just got

her

period and she hit puberty Big Time and I was promised that she would have

received those Immune Modulating Agents BY NOW. So, sue me if I come

across a bit arrogant, for I am sure if you were in my shoes, as MANY are you

would also, remember we aren't MASTERS OF THE UNIVERSE, WE ARE

HUMAN BEINGS in a temporary existence. And yes, some of you make this

into a darn contest and I am fed up with this group.

Good-bye

" Ms. Michele "

[Guest guest]

Thanks, Cat, for your positive reply. Where is the camp you have organized?

I have a close-to-16 yr. old, we have been patients of Dr. G. for almost 11

years, and I am not giving up hope yet. That may seen naive but the

explanations have always just resonated with me as being the best explanation

among the 20 or 30 others that have been proposed.

mary

[Guest guest]

So nicely put.

Suzanne Humphrey

From: catherine quinn <quinn.cat1968@...>

Reply-

Subject: Re: Older Kids VS. Newer Patients...It will be okay no

matter what....

Date: Tue, 12 Sep 2006 21:58:37 -0700 (PDT)

I don't think any of us who have been in this game for a long time have

to apologize for being extremely frustrated. I was told alot of things would

happen, because they could have, but funding was never provided as promised,

but honestly that is the political game in the world of medicine.

Like anything else, its a big game, and you have to know all of the right

players to get someone to fund you, and its a game filled with alot of

crafty players all vyeing for the same limited pot of funds.

Sadly, for those of us that have teenagers that are on the severe end of

this horrible disease, we are not going to experience true recovery. (But

there is always hope.)

Happily for the little guys, with the right immune meds, like the valtrex

and famvir at the point of onset, they have a reall chance of recovery. That

is awesome!

So what do the rest of us do? We need to take care of the lives we have

today. Advocate for services, if there are none, form a non-profit with

other like minded parents, create the programs you need, educational,

vocational, recreational, buy a unviersal life policy so that when you leave

the planet, your child will have enough money to help him live comfortably.

The key for us with older kids, is to get involved, take care of your

child not just today, but for tommorow when you are not here. A group of us

parents did just that, we formed a non-profit and created a summer camp

program for summer long services for teens ages 13 to 19, we created a

summer employment program, we are creating a Saturday Socialization Therapy

program, we are creating a sheltered employment program, and we hope to sell

our goods on-line, and eventually soon, we hope to start small businesses

for these wonderful young persons with Autism.

Even in the midst of great saddness there is always hope. Hope that you

can make things better for your child, and for another. Always hang onto

hope, and have faith that in the end, if you do all of the footwork, your

child will be okay when you leave mother earth.

God Bless.

Cat

<><

isoaa@... wrote:

You are all missing the point here. I am referring to the parents

today who

just

received diagnosis. There is a heck of a lot of INFO out there and more

publicity

about it being a medical condition.

As opposed in the early 90 " s when there was more of a lack of info.

Therefore

due to this most of us Older Parents didn't find until our kid was 6, 7

or

older and it is taking 3 or even 4 times the length to make the progress

younger

kids are making.

It frustrates me to hear a " Newbie " say: " oh take notes, do this, do that,

when

in actuality we all do what's best for our kids.

So the people who found before the age of 4 should thank God because

it is by no means LUCK it is because times are better for you than a decade

ago.

I am frankly tired of waiting for Immune Modulating Agents, my kid just got

her

period and she hit puberty Big Time and I was promised that she would have

received those Immune Modulating Agents BY NOW. So, sue me if I come

across a bit arrogant, for I am sure if you were in my shoes, as MANY are

you

would also, remember we aren't MASTERS OF THE UNIVERSE, WE ARE

HUMAN BEINGS in a temporary existence. And yes, some of you make this

into a darn contest and I am fed up with this group.

Good-bye

" Ms. Michele "

[Guest guest]

What grate programs you have created. Where are you and are there any

websites for them. Otherwise sounds like a great model to spread

around and plan for the future of our kids.

Good for you Cat!

-- In , catherine quinn <quinn.cat1968@...> wrote:

>

> I don't think any of us who have been in this game for a long

time have to apologize for being extremely frustrated. I was told alot

of things would happen, because they could have, but funding was never

provided as promised, but honestly that is the political game in the

world of medicine.

>

> Like anything else, its a big game, and you have to know all of

the right players to get someone to fund you, and its a game filled

with alot of crafty players all vyeing for the same limited pot of funds.

>

> Sadly, for those of us that have teenagers that are on the severe

end of this horrible disease, we are not going to experience true

recovery. (But there is always hope.)

>

> Happily for the little guys, with the right immune meds, like the

valtrex and famvir at the point of onset, they have a reall chance of

recovery. That is awesome!

>

> So what do the rest of us do? We need to take care of the lives we

have today. Advocate for services, if there are none, form a

non-profit with other like minded parents, create the programs you

need, educational, vocational, recreational, buy a unviersal life

policy so that when you leave the planet, your child will have enough

money to help him live comfortably.

>

> The key for us with older kids, is to get involved, take care of

your child not just today, but for tommorow when you are not here. A

group of us parents did just that, we formed a non-profit and created

a summer camp program for summer long services for teens ages 13 to

19, we created a summer employment program, we are creating a Saturday

Socialization Therapy program, we are creating a sheltered employment

program, and we hope to sell our goods on-line, and eventually soon,

we hope to start small businesses for these wonderful young persons

with Autism.

>

> Even in the midst of great saddness there is always hope. Hope

that you can make things better for your child, and for another.

Always hang onto hope, and have faith that in the end, if you do all

of the footwork, your child will be okay when you leave mother earth.

>

> God Bless.

>

> Cat

> <><

>

>

> isoaa@... wrote:

> You are all missing the point here. I am referring to the

parents today who

> just

> received diagnosis. There is a heck of a lot of INFO out there and more

> publicity

> about it being a medical condition.

>

> As opposed in the early 90 " s when there was more of a lack of info.

Therefore

> due to this most of us Older Parents didn't find until our kid

was 6, 7

> or

> older and it is taking 3 or even 4 times the length to make the

progress

> younger

> kids are making.

>

> It frustrates me to hear a " Newbie " say: " oh take notes, do this, do

that,

> when

> in actuality we all do what's best for our kids.

>

> So the people who found before the age of 4 should thank God

because

> it is by no means LUCK it is because times are better for you than a

decade

> ago.

>

> I am frankly tired of waiting for Immune Modulating Agents, my kid

just got

> her

> period and she hit puberty Big Time and I was promised that she

would have

> received those Immune Modulating Agents BY NOW. So, sue me if I come

> across a bit arrogant, for I am sure if you were in my shoes, as

MANY are you

> would also, remember we aren't MASTERS OF THE UNIVERSE, WE ARE

> HUMAN BEINGS in a temporary existence. And yes, some of you make this

> into a darn contest and I am fed up with this group.

>

> Good-bye

>

> " Ms. Michele "

>

>