Re: Let's embrace change...we can't let this promise fade away...

[Guest guest]

Mr. , I agree.  There are so many concerns that I have for my son and

his place in society, whether it be in school, or when he becomes an adult. I

worry about his health care and many others issues that were touched in his

promise, but how, as a parent, do I get involved to ensure that this promise is

kept?  Who do I have to write, call?  what can I do?  I would love to be active

in this issue so I can be certain that my son needs are addressed and taken

seriously.  Please, let me know what i can do?  Leilani

________________________________

To:

Sent: Tuesday, December 2, 2008 8:54:01 PM

Subject: Let's embrace change...we can't let this promise fade

away...

Since he is from here I think this is appropriate for someone in

Hawai'i to post:

http://www.barackob ama.com/pdf/ AutismSpectrumDi sorders.pdf

Look closely at this and let's decide as a whole.. every parent in the

nation to for once make a President back up his words..and since the

V.P. elect is going to be so active he needs to back up their words on

that statement. I found it doing some searches today and had of

course known about it from other ways but didn't realize they posted

this on their site - this helps dramatically in producing proposed

legislation for the new Administration to PASS as they have made this

promise. Another parent in one of the groups is putting me in touch

with one of Obama's staffers so that should kick off one of the many

'swings' the world of ASD's will take at the 'hardball' approach. I

am very thankful that somebody in a high ranking..or shall we say in

less then two months the Highest Rank in the nation - is addressing

Autism. FINALLY !!! Now it's up to us parents and those that are

more active to get involved and make those words into reality. "

Change " - it's about time.

E. , Sr. Global Civil Rights Lobbyist/Advocate

The Office of Advocacy for Autistic Children

[Guest guest]

This all sounds well and good but let's see if he actually follows through.? I

don't have that much faith.? Most politicians are big talkers.? It's the walk

that I will wait for!?? Where is he going to get the money for all this

" change " ?

?Blessings,

homeschooling Mom to AJ (14), (10), ^l^, (age

7, Trisomy 18 mosaic AKA 's syndrome) and Birgitta (age 5, adoption

finalized 2/1/05 !!, Trisomy 21 AKA Down's Syndrome, Fetal Alcohol Syndrome,

Autism, SID)

Let's embrace change...we can't let this promise fade

away...

Since he is from here I think this is appropriate for someone in

Hawai'i to post:

http://www.barackobama.com/pdf/AutismSpectrumDisorders.pdf

Look closely at this and let's decide as a whole.. every parent in the

nation to for once make a President back up his words..and since the

V.P. elect is going to be so active he needs to back up their words on

that statement. I found it doing some searches today and had of

course known about it from other ways but didn't realize they posted

this on their site - this helps dramatically in producing proposed

legislation for the new Administration to PASS as they have made this

promise. Another parent in one of the groups is putting me in touch

with one of Obama's staffers so that should kick off one of the many

'swings' the world of ASD's will take at the 'hardball' approach. I

am very thankful that somebody in a high ranking..or shall we say in

less then two months the Highest Rank in the nation - is addressing

Autism. FINALLY !!! Now it's up to us parents and those that are

more active to get involved and make those words into reality. "

Change " - it's about time.

E. , Sr. Global Civil Rights Lobbyist/Advocate

The Office of Advocacy for Autistic Children

------------------------------------

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kids. Share favorite bookmarks, ideas, and other information by including them.

Don't forget, messages are a permanent record of the archives for our list.

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--------------------------------------------

[Guest guest]

YEAH!! OBAMA ALL THE WAY, I LOVE THAT MAN

In a message dated 12/3/2008 10:20:20 A.M. Eastern Standard Time,

stamtorch@... writes:

This all sounds well and good but let's see if he actually follows through.?

I don't have that much faith.? Most politicians are big talkers.? It's the

walk that I will wait for!?? Where is he going to get the money for all this

" change " ?

?Blessings,

homeschooling Mom to AJ (14), (10), ^l^,

(age 7, Trisomy 18 mosaic AKA 's syndrome) and Birgitta (age 5, adoption

finalized 2/1/05 !!, Trisomy 21 AKA Down's Syndrome, Fetal Alcohol Syndrome,

Autism, SID)

Let's embrace change...we can't let this promise fade

away...

Since he is from here I think this is appropriate for someone in

Hawai'i to post:

_http://www.barackobhttp://www.bhttp://www.barachttp://www._

(http://www.barackobama.com/pdf/AutismSpectrumDisorders.pdf)

Look closely at this and let's decide as a whole.. every parent in the

nation to for once make a President back up his words..and since the

V.P. elect is going to be so active he needs to back up their words on

that statement. I found it doing some searches today and had of

course known about it from other ways but didn't realize they posted

this on their site - this helps dramatically in producing proposed

legislation for the new Administration to PASS as they have made this

promise. Another parent in one of the groups is putting me in touch

with one of Obama's staffers so that should kick off one of the many

'swings' the world of ASD's will take at the 'hardball' approach. I

am very thankful that somebody in a high ranking..or shall we say in

less then two months the Highest Rank in the nation - is addressing

Autism. FINALLY !!! Now it's up to us parents and those that are

more active to get involved and make those words into reality. "

Change " - it's about time.

E. , Sr. Global Civil Rights Lobbyist/Advocate

The Office of Advocacy for Autistic Children

------------------------------------

--------------------------------------------------

Checkout our homepage for information, bookmarks, and photos of

our

kids. Share favorite bookmarks, ideas, and other information by including

them.

Don't forget, messages are a permanent record of the archives for our list.

_http://groups.http://grohttp://grhttp:/_

(http://groups.yahoo.com/group/)

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[Guest guest]

If the money from programs that are not working is removed and reassigned to

places which will be used appropriately (think pork barrel and bridges to no

where) then there will be money for the needs of our children.

IF one wants to affect change and be involved in change AND have a voice in

it, than go to change.gov and express your oprinion.

I also believe that most politicians become overblown in what they can

accomplish. But I also believe that what needs to be done CAN be done. At

least this politician is attempting to let the peoples' voice be heard. Let

him hear us loud and clear.

>

>

>

> This all sounds well and good but let's see if he actually follows

> through.? I don't have that much faith.? Most politicians are big talkers.?

> It's the walk that I will wait for!?? Where is he going to get the money for

> all this " change " ?

>

> ?Blessings,

>

>

> homeschooling Mom to AJ (14), (10), ^l^,

> (age 7, Trisomy 18 mosaic AKA 's syndrome) and Birgitta (age 5,

> adoption finalized 2/1/05 !!, Trisomy 21 AKA Down's Syndrome, Fetal Alcohol

> Syndrome, Autism, SID)

>

> Let's embrace change...we can't let this promise fade

> away...

>

> Since he is from here I think this is appropriate for someone in

> Hawai'i to post:

> http://www.barackobama.com/pdf/AutismSpectrumDisorders.pdf

> Look closely at this and let's decide as a whole.. every parent in the

> nation to for once make a President back up his words..and since the

> V.P. elect is going to be so active he needs to back up their words on

> that statement. I found it doing some searches today and had of

> course known about it from other ways but didn't realize they posted

> this on their site - this helps dramatically in producing proposed

> legislation for the new Administration to PASS as they have made this

> promise. Another parent in one of the groups is putting me in touch

> with one of Obama's staffers so that should kick off one of the many

> 'swings' the world of ASD's will take at the 'hardball' approach. I

> am very thankful that somebody in a high ranking..or shall we say in

> less then two months the Highest Rank in the nation - is addressing

> Autism. FINALLY !!! Now it's up to us parents and those that are

> more active to get involved and make those words into reality. "

> Change " - it's about time.

> E. , Sr. Global Civil Rights Lobbyist/Advocate

> The Office of Advocacy for Autistic Children

>

> ------------------------------------

>

> --------------------------------------------------

> Checkout our homepage for information, bookmarks, and photos of

> our

> kids. Share favorite bookmarks, ideas, and other information by including

> them.

> Don't forget, messages are a permanent record of the archives for our list.

>

> http://groups.yahoo.com/group/

> --------------------------------------------

[Guest guest]

Leilani, , Sara, and to the group..

I will be getting more information during the following month so we

can address the transitional team with immediate concerns for our

community. Please email me at Peace4kids@... with anything you

think may add to a proposed Presidential ACT I am working on at this

time. It is not even in rough draft form but will be based on the

campaign promise and the immediate needs of our children. I will warn

ANYONE that wants to engage in Political squabble with me over the

presidential campaign that I could CARE LESS about who lost..ok ?

What matters to me is who will be the number one man that will pull

back the 'pork barrel' spending habits that we've seen for the last 8

years and get our troops out of war and let that money go to our

country.. to our kids.. to our future. We've wasted enough time and

energy on who said what or who did this or that. Let's focus on the

reason for this season... May the favour and blessings of our Lord be

upon you. As the the post stated.. we can't let this fade away.

E. , Sr. The Office of Advocacy for Autistic Children

[Guest guest]

WOW, we actually have a wonderful political trooper to assist when

taking action where needed, such a blessing when contributing to even

offer for others, AMEN.

Leilani, please share your concerns and email Mr. with the

email he had shared on one of his post which is a wonderful start.

Especially not only because y'all are Americans but since you are in

Texans, do jump on this bandwagon.

RE:

Please email me at Peace4kids@... with anything you

think may add to a proposed Presidential ACT I am working on at this

time.

E. , Sr. The Office of Advocacy for Autistic Children

Irma,20,DS/ASD

P.S. , may I ask which state are you from?

>

> Mr. , I agree.� There are so many concerns that I have for

my son and his place in society, whether it be in school, or when he

becomes an adult. I worry about his health care and many others issues

that were touched in his promise, but how, as a parent, do I get

involved to ensure that this promise is kept?� Who do I have to write,

call?� what can I do?� I would love to be active in this issue so I

can be certain that my son needs are addressed and taken seriously.�

Please, let me know what i can do?� Leilani

[Guest guest]

Irma,

I'm currently in Hawai'i, which is where I am normally at. I do work

across the Nation and elsewhere by teleconference generally. I will be

going back to DC again in late Jan. . I would love to have some

further input from other parents across the nation regarding needs

that I may not be addressing. It's always good to 'pool' the ideas of

all ! May you be blessed and in the favour of God..

E. , Sr.

> >

> > Mr. , I agree.� There are so many concerns that I have for

> my son and his place in society, whether it be in school, or when he

> becomes an adult. I worry about his health care and many others issues

> that were touched in his promise, but how, as a parent, do I get

> involved to ensure that this promise is kept?� Who do I have to write,

> call?� what can I do?� I would love to be active in this issue so I

> can be certain that my son needs are addressed and taken seriously.�

> Please, let me know what i can do?� Leilani

>

[Guest guest]

Mr. ,

I tried to email you but I think there was a problem.  There are many issues

that I feel need to be addressed.   First off, I am from Texas, and recently

there has finally been some media attention on the horrible conditions of ALL

the state schools here.  All 13 of them were found unacceptable with hundreds of

allegations of abuse and even rape.  Even though my son is only 7 years old, I

constantly worry about the future and what it holds for him.  I am going to try

like hell to keep my son with me for as long as possible, as long as I am

capable, I will be the one to care for him, but there are families who do not

have a choice, and I feel for them and those who had to personally deal with the

state school situation.  However, I dont think that this issue starts at the

state school level, I think that issues similiar to his begin at the elementary

school level.  If you talk to any parent with a special needs child, I can

almost guarantee that

one of the biggest fights, other than health issues, is fighting the school

district to make sure their child gets teh education that they deserve.  Too

often these children are placed in overcrowded and underfunded special education

classrooms where they generally get babysat for years and passed on without

gaining any skills that would help them reach the level of independence that

they need, to the maximum extent possible of course.  Sure, there are laws like

IDEA and NCLB, but who is making sure that these laws are adhered to?  Who is

making sure that each student is being educated within their LRE?  Where are the

checks and balances for the special education programs.  Many teachers are

unfortunatly having to teach to the TAKS (standardized tests) and often our

kiddos our shoved further to the back burner to cater to the children who are

able to perform on a test that may ultimately determine funding, and what

happens when the schools dont get

the rating they want?  The blame is put on the special education students whose

scores must be factored in as well, I see it every year.  Way too often,

especially in small towns like where I am from, all the special ed students are

lumped into one classroom with one certified teacher and a few aides.  As many

times as a district will tell you that this works, I assure you, it doesn't. 

Ive worked in these situations before, and there is no way that a severly

autistic child can work on his skills when you have several " resource " students

coming in and out of the classroom throughout teh day.  I have seen severe MR

children sit in class all day, while other children get service.  I have seen

resource kids who are capable of taking tests get services with certified

teachers while others watch tv with an aide.  There needs to be funding

available to have a certified Life skills teacher to work withthose who need it

and a certified teacher to work

with those students who need help in academic areas.  Each student has

different goals, realisticly, some can handle academics and others need to learn

how to function with everyday life, but there needs to be funding for it and

there definantly needs to a program where these classrooms can be checked on and

where special ed teachers can ask questions and receive the answers needed to be

sure they are in compliance.  Think about what would happen if our children

continue to get babysat in school.  If 1 out of 150 kids are autistic, sooner or

later that will be 1 out of 150 adults and we need to prepare them for society

and prepare society for them.  What kind of life will they have after school

especially if we continue to allow our school districts to get away with putting

our children aside and then our only choice is to send them to unacceptable

state schoools.  We as a society need to take care of those who cannot take care

of themselves, we

need to be the voice for those who cannot speak.  This is a civil rights issue

and there needs to be a movement.  Let me know how I can help.  Leilani Aguirre

________________________________

To:

Sent: Friday, December 5, 2008 10:34:37 AM

Subject: Re: Let's embrace change...we can't let this promise fade

away...

Irma,

I'm currently in Hawai'i, which is where I am normally at. I do work

across the Nation and elsewhere by teleconference generally. I will be

going back to DC again in late Jan. . I would love to have some

further input from other parents across the nation regarding needs

that I may not be addressing. It's always good to 'pool' the ideas of

all ! May you be blessed and in the favour of God..

E. , Sr.

> >

> > Mr. , I agree.� There are so many concerns that I have for

> my son and his place in society, whether it be in school, or when he

> becomes an adult. I worry about his health care and many others issues

> that were touched in his promise, but how, as a parent, do I get

> involved to ensure that this promise is kept?� Who do I have to write,

> call?� what can I do?� I would love to be active in this issue so I

> can be certain that my son needs are addressed and taken seriously.�

> Please, let me know what i can do?� Leilani

>

[Guest guest]

>

> Irma,

>

> I'm currently in Hawai'i, which is where I am normally at. I do

work across the Nation and elsewhere by teleconference generally. I

will be going back to DC again in late Jan. . I would love to have

some further input from other parents across the nation regarding

needs that I may not be addressing. It's always good to 'pool' the

ideas of all ! May you be blessed and in the favour of God..

> E. , Sr.

Thank you for your response. It would be a pleasure to share any

information your way.

Would love for you to join the Community Now! Listserve, this is

focusing on the Forgotten ones and the reality when it comes to the

findings of how the state funds are being spent but must warn you

though that it does reflect on mostly Texans.

CommunityNowFreedom.com

Please go to the link below to join the Community Now! List.

http://groups.yahoo.com/group/Community_Now/

Several members of an adult support group which my friends and I have

Founded call TAIID (Texas with Autism and Intellectual

Disabilities)have recently assisted our fellow friends compiling a

report among adults with autism in Texas and whatever information

founded throughout the nation.

This is just a small piece of the report sent to the Texas Council on

Autism and PDD with a following chart which summarizes the survey of

states in regard to adults with autism.

Do not think they were able to get information in the state of Hawaii.

Very small piece of the report as it touches a lot of the issues going on.

RE:

Adults with autism seem to be lost in the delivery system. After age

22 years, in Texas, when federal legislation ends supporting persons

with autism (I.D.E.A.), there are no programs that transition the

person with autism into the community and monitors services over the

lifespan. Does any person (disabled or non-disabled) have all the

knowledge, skills, and training they need when they reach 22 years of

age? No. This is not expected of any person, yet this is the situation

that confronts the young adult with autism and that person’s family.

It would seem that after all the money that has been spent on the free

and appropriate education of persons with disabilities, some one would

ask where the educational services lead. There is little evidence that

I.D.E.A. leads to being prepared to live in the community and to

occupy time in a productive manner.

A second impression is that parents and family are not considered in

the equation of services to persons with autism. Why is this? It is as

if parents and family are on the outside, yet parents and family are

the only constant in the life of the person with autism. Why are

agencies so reluctant to include parents and family members as equals

in the deliberations of how services are to be provided? Yes, there

are supposed planning meetings but these seem to be done to complete

the file folder instead of developing a team of equals and addressing

the concerns of all the team members. If Texas is ever to be advanced

in service delivery, it must include parents as active participants,

not passive recipients. It would help if parents have a voice in the

service delivery system. Perhaps an Ombudsman that parents could

contact would help answer the many questions, rumors, and

misinformation that parents seem to react to.

Very proud of everyone coming together and especially when the parents

with younger ones have also jump aboard which is nice for insurance

purpose when seeking action where needed. After all this is their

individuals future for when they become adults.

Thank you for all you do, just notice you are also on the

Texas Autism Advocacy yahoo group list, this is wonderful.

Welcome aboard here on this listserve and your interest with the dual

dx's of what most of us have also been dealing with the extra

challenges given. Once my son was dx'd under the autism spectrum, this

listserve has been such a Blessing to know that there were many in

similar shoes with the challenges given.

My son has benefit from me staying proactive in the autism arena in

regards to the specialize services & biomedical intervention and glad

I have had some training where needed. You name it, have had to wear

many hats and sadly though for when our individuals get older, there

are not much therapist or Providers or medical professionals to assist

working with the adolescent/adults especially when some of the funds

are aimed more for the younger kiddos which is of course for the best

but our individuals as they get older should continue receiving the

supported services needed.

What I do not get is the fact of how when our individuals reach 21

y/o, Medicaid no longer pays for dental services. What happen to oral

hygiene? My son is supposedly under one of the top Medicaid Waiver

program (HCS/Home Community Services)which is like the Cadillac

service but my friends and I see it without wheels while their

individuals are still on the wait list.

When one's name comes up under this waiver program, there is a $1,000

funds for dental but my son requires to be sedated. I have not gone

this route yet as my son is just entering his 3rd month under this

waiver program and I am his Care Provider which is another

dilemma occurring also where the top dog agencies would like to have

these funds cut so that our individuals will live in group homes, this

is where my son will not fit in should I leave this as a last resort

for when I am no longer around as I choose for him to live with me and

preparing him to live hopefully similar to what Sara here on this

listserve has shared.

There is so much to tackle indeed, all worth it when accomplishments

of any hurdle of a challenge given and progress has been made.

Never fails, like with the alternative biomedical intervention or with

the specialized services are being picked on and especially within the

Waiver programs.

Those who stay behind the desk to make these decision only see it as

business and waste too many Federal state funds and thensome.

God Bless,

Irma,20,DS/ASD

[Guest guest]

Leilani,

Very well said on what you have posted, thanks.

You are such a blessing for what you do for your son.

Which you were here in SA. : )

Irma,20,DS/ASD

[Guest guest]

Yes, it would be great to get rid of all that pork-barrel spending, but I've got

news for you all.  It isn't going to happen unless the President gets a

line-item veto authority.  It doesn't matter who is President, the Congress

sticks all those pork programs into a bill & it has to be voted on the way it is

or go through the whole process again. 

 

It will be great if Mr. Obama can do something for autistic kids, but I don't

know where the money will come from.  It seems like the government lately thinks

that we can just print more money & give $700 billion away to those financial

companies that got us into this mess.  The CEO's of certain companies,

especially Fannie Mae & Freddie Mac need to be prosecuted & serve time for

ignoring many warnings of trouble coming, due to sub-prime mortgages.  At any

rate both our and our children's future has been mortgaged heavily.  Where is

the accountability?  Some of our congressmen & Senators also need to be

investigated, beginning with Barney .  They accepted big bucks from these 2

companies & said " They're doing a heck-of-a-job " .  Sound familiar?

 

JMHO.

 

in KC, MO

[Guest guest]

Teressa,

I agree on several points you made. As a past Mortgage Broker (back

in the 80's), I am appalled at the Fannie/Freddie Scandal - but I am

not surprised. The Gov. of IL. trying to 'sell' Obama's old

seat..more scandal. All of this directly affects our children as Sara

pointed out. I am going into this 'season' with a positive attitude

that the printers will roll out some fresh 100 dollar bills and we'll

have the funds we need (Sorry..a little sarcasm there !).

The Bailout Fund has not been completely spent. Obama was to inherit

a portion of that when coming to office. With they way they work WHO

KNOWS what is really going on behind the pictures. I believe that our

New Administration will be much more thorough in 'check and balance'.

I also believe Obama has a keen interest in uniting America once

again..as we became split heavily over the Primary and the Election.

I think that when we are all in one accord things can happen for the

positive. Of course the whole country will probably never be in 'one

accord' but the spirit of America dipped with the Wars and differences

of opinion.. and while all that pork barrel spending was chewing away

at our economy ( I can remember the Fed Rate being 8.5 percent ), the

soon to be past Administration basically forgot about our kids.

Thanks to both candidates Autism came out in a largely viewed debate

and many people that didn't know what it was started to ask questions.

Awareness is always one thing I try to keep on the forefront. My

personal opinion is exactly that.. my opinion.. If we can bail out an

Auto Industry (if the GOP lets it happen) and we can spend 15 billion

on the Second bailout for Chrysler et al, we definitely can find the

funds to back up the needs of our children and to set up a REAL

program that will give us some serious reform. If they can come up

with 700 bil. (Thanks to China),

they can come up with 5 more to fund a real effort to change the

system us parents go through. Bailed out insurance companies must pay

for Physician ordered 'anything', School Districts and States must

comply or face a true LOSS of Fed Block Grants, We need reform and

that is what I'm proposing. Off that subject.. The mommy of my

kiddo's called about 20 minutes ago and told me that she made

strawberry shortcake with the Strawberry Pro-biotics and my son

gobbled it up. It aeems that his situation yesterday with the Sub.

and no Aide...and his trip to the Police Station are out of his mind.

He got on the phone and laughed and laughed which really raised my

spirit. Then he used his palm pocket Aug Device to tell me 'Dad Dad

Dad, can I go school " .. he is fast with that thing. So everyone's

peachy keen and happy and the teacher and the Aide are back but due to

my attorney insisting we keep him out until Monday he's going to have

a very long weekend ! Charlyne I am thinking about you and zeb as I

try to still calm myself over it. I am 'gagged' regarding the

incident as I already stepped out of bounds posting about what

happened. But I want you to know my thoughts and prayers are with you

and I hope everything works out. One thing I can say is we are filing

and it should be served by Friday - luckily this district is really

good about things 'normally' so I don't expect any backlash from that

happening. But until Monday we decided to keep him out and let him

have some fun after that really stupid incident. His Momma told me

that the V.P. has two black eyes..LiL Mikey is 5 7 175 and very

strong. I think next time they wont take away a non verbal Autistic

Child's Aug. speech device..especially this one as it talks out loud

and he will play with it constantly making up new sentences and

sayings and storing them. I know I've jumped around alot here on alot

of subjects.. I couldn't sleep last night..after 3 hours I was back up

- still ready to throw my own tantrum... Take care all and Peace be

with you.

E.

>

> Yes, it would be great to get rid of all that pork-barrel spending,

but I've got news for you all.  It isn't going to happen unless the

President gets a line-item veto authority.  It doesn't matter who is

President, the Congress sticks all those pork programs into a bill &

it has to be voted on the way it is or go through the whole process

again. 

>  

> It will be great if Mr. Obama can do something for autistic kids,

but I don't know where the money will come from.  It seems like the

government lately thinks that we can just print more money & give $700

billion away to those financial companies that got us into this mess. 

The CEO's of certain companies, especially Fannie Mae & Freddie Mac

need to be prosecuted & serve time for ignoring many warnings of

trouble coming, due to sub-prime mortgages.  At any rate both our and

our children's future has been mortgaged heavily.  Where is the

accountability?  Some of our congressmen & Senators also need to be

investigated, beginning with Barney .  They accepted big bucks

from these 2 companies & said " They're doing a heck-of-a-job " .  Sound

familiar?

>  

> JMHO.

>  

> in KC, MO

>

>

>

>

>