Re: you will all be proud of me

[Guest guest]

hey Elllen do they have a thing in NSW with Taxi's how u get half price on

taxi fares? have u lokoed into that?

>

> I am proud of you ellen. Writing letters is an excellent way to fight

> back, and I think it will carry a lot of weight coming from you (as opposed

> to someone writing it for you). Best of luck!

>

> (mom to Evan 8.5 mos)

>

> ellen howe wrote:

> well you will all be proud of em you know how in here we often talk

> about us

> adult chargers adovocating for ourselfves or trying well yesterday i did

> well i just hope i did coz well the servcie provider im with is doing some

> changes under the departmen t of aging and disability thing dadc as its

> known zas well they are making it so that we can if we have comunity

> participation we can only work six hours and we have to have centre based

> activites three days now one day im there but see this thing will mean

> that

> northcott wont be able to help em with tafe and stuff so yesterday we were

> writing letters in our monday group thing and my letter was so long much

> longer than anyone else i said basicly wat we have said in here which is

> us

> with physical disabilites dont get noticed i said hwo we need our funding

> i

> said hwo if we did this mum would have to pay over two hundred dollars in

> taxis for my transport i said no person with a disability like me is able

> to

> use public transport independantly like a normal person i said all this

> stuff now if i get noticed i will be happy bt et i dont bet they just

> chuck

> it in the bin and pay no attention but at least i did try and advocate for

> my self i said that mums a lawyer and has been battling the system m;y

> hole

> life and ive said ive been put through many changes and i gave an example

> hugs ellen

>

>

>

[Guest guest]

hey Elllen do they have a thing in NSW with Taxi's how u get half price on

taxi fares? have u lokoed into that?

>

> I am proud of you ellen. Writing letters is an excellent way to fight

> back, and I think it will carry a lot of weight coming from you (as opposed

> to someone writing it for you). Best of luck!

>

> (mom to Evan 8.5 mos)

>

> ellen howe wrote:

> well you will all be proud of em you know how in here we often talk

> about us

> adult chargers adovocating for ourselfves or trying well yesterday i did

> well i just hope i did coz well the servcie provider im with is doing some

> changes under the departmen t of aging and disability thing dadc as its

> known zas well they are making it so that we can if we have comunity

> participation we can only work six hours and we have to have centre based

> activites three days now one day im there but see this thing will mean

> that

> northcott wont be able to help em with tafe and stuff so yesterday we were

> writing letters in our monday group thing and my letter was so long much

> longer than anyone else i said basicly wat we have said in here which is

> us

> with physical disabilites dont get noticed i said hwo we need our funding

> i

> said hwo if we did this mum would have to pay over two hundred dollars in

> taxis for my transport i said no person with a disability like me is able

> to

> use public transport independantly like a normal person i said all this

> stuff now if i get noticed i will be happy bt et i dont bet they just

> chuck

> it in the bin and pay no attention but at least i did try and advocate for

> my self i said that mums a lawyer and has been battling the system m;y

> hole

> life and ive said ive been put through many changes and i gave an example

> hugs ellen

>

>

>

[Guest guest]

bel we do have that but form coogee to parramata its 85 dollars and

northoctt gives us cab charges and if they cant do that it will mean more

money

>

> Ellen-

>

> We are always proud of you )

>

> Completely awesome - just like you -

>

> hugs-

> Yuka

>

> you will all be proud of me

>

>

> > well you will all be proud of em you know how in here we often talk

> about

> us

> > adult chargers adovocating for ourselfves or trying well yesterday i did

> > well i just hope i did coz well the servcie provider im with is doing

> some

> > changes under the departmen t of aging and disability thing dadc as its

> > known zas well they are making it so that we can if we have comunity

> > participation we can only work six hours and we have to have centre

> based

> > activites three days now one day im there but see this thing will mean

> that

> > northcott wont be able to help em with tafe and stuff so yesterday we

> were

> > writing letters in our monday group thing and my letter was so long much

> > longer than anyone else i said basicly wat we have said in here which is

> us

> > with physical disabilites dont get noticed i said hwo we need our

> funding

> i

> > said hwo if we did this mum would have to pay over two hundred dollars

> in

> > taxis for my transport i said no person with a disability like me is

> able

> to

> > use public transport independantly like a normal person i said all this

> > stuff now if i get noticed i will be happy bt et i dont bet they just

> chuck

> > it in the bin and pay no attention but at least i did try and advocate

> for

> > my self i said that mums a lawyer and has been battling the system m;y

> hole

> > life and ive said ive been put through many changes and i gave an

> example

> > hugs ellen

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

bel we do have that but form coogee to parramata its 85 dollars and

northoctt gives us cab charges and if they cant do that it will mean more

money

>

> Ellen-

>

> We are always proud of you )

>

> Completely awesome - just like you -

>

> hugs-

> Yuka

>

> you will all be proud of me

>

>

> > well you will all be proud of em you know how in here we often talk

> about

> us

> > adult chargers adovocating for ourselfves or trying well yesterday i did

> > well i just hope i did coz well the servcie provider im with is doing

> some

> > changes under the departmen t of aging and disability thing dadc as its

> > known zas well they are making it so that we can if we have comunity

> > participation we can only work six hours and we have to have centre

> based

> > activites three days now one day im there but see this thing will mean

> that

> > northcott wont be able to help em with tafe and stuff so yesterday we

> were

> > writing letters in our monday group thing and my letter was so long much

> > longer than anyone else i said basicly wat we have said in here which is

> us

> > with physical disabilites dont get noticed i said hwo we need our

> funding

> i

> > said hwo if we did this mum would have to pay over two hundred dollars

> in

> > taxis for my transport i said no person with a disability like me is

> able

> to

> > use public transport independantly like a normal person i said all this

> > stuff now if i get noticed i will be happy bt et i dont bet they just

> chuck

> > it in the bin and pay no attention but at least i did try and advocate

> for

> > my self i said that mums a lawyer and has been battling the system m;y

> hole

> > life and ive said ive been put through many changes and i gave an

> example

> > hugs ellen

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

bel we do have that but form coogee to parramata its 85 dollars and

northoctt gives us cab charges and if they cant do that it will mean more

money

>

> Ellen-

>

> We are always proud of you )

>

> Completely awesome - just like you -

>

> hugs-

> Yuka

>

> you will all be proud of me

>

>

> > well you will all be proud of em you know how in here we often talk

> about

> us

> > adult chargers adovocating for ourselfves or trying well yesterday i did

> > well i just hope i did coz well the servcie provider im with is doing

> some

> > changes under the departmen t of aging and disability thing dadc as its

> > known zas well they are making it so that we can if we have comunity

> > participation we can only work six hours and we have to have centre

> based

> > activites three days now one day im there but see this thing will mean

> that

> > northcott wont be able to help em with tafe and stuff so yesterday we

> were

> > writing letters in our monday group thing and my letter was so long much

> > longer than anyone else i said basicly wat we have said in here which is

> us

> > with physical disabilites dont get noticed i said hwo we need our

> funding

> i

> > said hwo if we did this mum would have to pay over two hundred dollars

> in

> > taxis for my transport i said no person with a disability like me is

> able

> to

> > use public transport independantly like a normal person i said all this

> > stuff now if i get noticed i will be happy bt et i dont bet they just

> chuck

> > it in the bin and pay no attention but at least i did try and advocate

> for

> > my self i said that mums a lawyer and has been battling the system m;y

> hole

> > life and ive said ive been put through many changes and i gave an

> example

> > hugs ellen

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

WAY TO GOOOOOO, ELLEN!

I " dropped " into the list to see how things are going and there was your

message! I am so proud of you!!!! People in power need to hear from their

constituents and lots of great things happen as a result! I'm not sure how

the government works in Australia, but if it is anything like here - it

moves very slowly! Do you have government representatives from the area

where you live? If so, it might be helpful to write a letter (or a copy of

the one you wrote) to your representative. How about visiting people in

government - the ones who make and change the laws? You have such a

wonderful personality, people would be delighted to meet you and certainly

remember who you are:-)

Andy has testified to our legislature in helping to pass laws and they

legislature LOVED It. They much prefer to hear directly from consumers than

another adult bureaucrat:-) Maybe your life calling is politics....you

certainly are persuasive!

In my peek into the listserve I see notice 's surgery -

congratulations to Simon and Flo. It's behind you, now you can breathe!

My best to everyone who is stressed out in hospitals, home and school! You

all are wonderful people and your kids are fortunate to have you!

Sally

(Mom to Andy, 24)

[Guest guest]

WAY TO GOOOOOO, ELLEN!

I " dropped " into the list to see how things are going and there was your

message! I am so proud of you!!!! People in power need to hear from their

constituents and lots of great things happen as a result! I'm not sure how

the government works in Australia, but if it is anything like here - it

moves very slowly! Do you have government representatives from the area

where you live? If so, it might be helpful to write a letter (or a copy of

the one you wrote) to your representative. How about visiting people in

government - the ones who make and change the laws? You have such a

wonderful personality, people would be delighted to meet you and certainly

remember who you are:-)

Andy has testified to our legislature in helping to pass laws and they

legislature LOVED It. They much prefer to hear directly from consumers than

another adult bureaucrat:-) Maybe your life calling is politics....you

certainly are persuasive!

In my peek into the listserve I see notice 's surgery -

congratulations to Simon and Flo. It's behind you, now you can breathe!

My best to everyone who is stressed out in hospitals, home and school! You

all are wonderful people and your kids are fortunate to have you!

Sally

(Mom to Andy, 24)

[Guest guest]

yeah im forntunate for my mummy xxx

>

> WAY TO GOOOOOO, ELLEN!

>

> I " dropped " into the list to see how things are going and there was your

> message! I am so proud of you!!!! People in power need to hear from

> their

> constituents and lots of great things happen as a result! I'm not sure

> how

> the government works in Australia, but if it is anything like here - it

> moves very slowly! Do you have government representatives from the area

> where you live? If so, it might be helpful to write a letter (or a copy

> of

> the one you wrote) to your representative. How about visiting people in

> government - the ones who make and change the laws? You have such a

> wonderful personality, people would be delighted to meet you and certainly

> remember who you are:-)

>

> Andy has testified to our legislature in helping to pass laws and they

> legislature LOVED It. They much prefer to hear directly from consumers

> than

> another adult bureaucrat:-) Maybe your life calling is politics....you

> certainly are persuasive!

>

> In my peek into the listserve I see notice 's surgery -

> congratulations to Simon and Flo. It's behind you, now you can breathe!

>

> My best to everyone who is stressed out in hospitals, home and

> school! You

> all are wonderful people and your kids are fortunate to have you!

>

> Sally

> (Mom to Andy, 24)

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

yeah im forntunate for my mummy xxx

>

> WAY TO GOOOOOO, ELLEN!

>

> I " dropped " into the list to see how things are going and there was your

> message! I am so proud of you!!!! People in power need to hear from

> their

> constituents and lots of great things happen as a result! I'm not sure

> how

> the government works in Australia, but if it is anything like here - it

> moves very slowly! Do you have government representatives from the area

> where you live? If so, it might be helpful to write a letter (or a copy

> of

> the one you wrote) to your representative. How about visiting people in

> government - the ones who make and change the laws? You have such a

> wonderful personality, people would be delighted to meet you and certainly

> remember who you are:-)

>

> Andy has testified to our legislature in helping to pass laws and they

> legislature LOVED It. They much prefer to hear directly from consumers

> than

> another adult bureaucrat:-) Maybe your life calling is politics....you

> certainly are persuasive!

>

> In my peek into the listserve I see notice 's surgery -

> congratulations to Simon and Flo. It's behind you, now you can breathe!

>

> My best to everyone who is stressed out in hospitals, home and

> school! You

> all are wonderful people and your kids are fortunate to have you!

>

> Sally

> (Mom to Andy, 24)

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

yeah im forntunate for my mummy xxx

>

> WAY TO GOOOOOO, ELLEN!

>

> I " dropped " into the list to see how things are going and there was your

> message! I am so proud of you!!!! People in power need to hear from

> their

> constituents and lots of great things happen as a result! I'm not sure

> how

> the government works in Australia, but if it is anything like here - it

> moves very slowly! Do you have government representatives from the area

> where you live? If so, it might be helpful to write a letter (or a copy

> of

> the one you wrote) to your representative. How about visiting people in

> government - the ones who make and change the laws? You have such a

> wonderful personality, people would be delighted to meet you and certainly

> remember who you are:-)

>

> Andy has testified to our legislature in helping to pass laws and they

> legislature LOVED It. They much prefer to hear directly from consumers

> than

> another adult bureaucrat:-) Maybe your life calling is politics....you

> certainly are persuasive!

>

> In my peek into the listserve I see notice 's surgery -

> congratulations to Simon and Flo. It's behind you, now you can breathe!

>

> My best to everyone who is stressed out in hospitals, home and

> school! You

> all are wonderful people and your kids are fortunate to have you!

>

> Sally

> (Mom to Andy, 24)

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

You know, I have testified at the legislature and I have done other things.

I think they are starting to become used to hearing of parents advocating, of

parents sharing about their children's pain and their children's absolute joy.

Or at least they are getting thick skin.

But it wasn't until Kris (Patty's sister) testified that people stopped what

they were doing and listened. Her words were from the soul but also from her

great wealth of knowledge. When Patty came up next that just knocked their

socks off.

That was years ago. Guess we have to get back on the track in the getting out

there. But the sad thing is that it takes time off from work. How many

people can do that? Not when you have a child with CHARGE. All sick and/or

personal time gets used up pretty quickly.

I wish there were a way more people could make a difference.

All of you might want to invite your legislator to your house, out for

coffee, or even just give a call to let them know you are there and want to be

helpful in any way.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

You know, I have testified at the legislature and I have done other things.

I think they are starting to become used to hearing of parents advocating, of

parents sharing about their children's pain and their children's absolute joy.

Or at least they are getting thick skin.

But it wasn't until Kris (Patty's sister) testified that people stopped what

they were doing and listened. Her words were from the soul but also from her

great wealth of knowledge. When Patty came up next that just knocked their

socks off.

That was years ago. Guess we have to get back on the track in the getting out

there. But the sad thing is that it takes time off from work. How many

people can do that? Not when you have a child with CHARGE. All sick and/or

personal time gets used up pretty quickly.

I wish there were a way more people could make a difference.

All of you might want to invite your legislator to your house, out for

coffee, or even just give a call to let them know you are there and want to be

helpful in any way.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

You know, I have testified at the legislature and I have done other things.

I think they are starting to become used to hearing of parents advocating, of

parents sharing about their children's pain and their children's absolute joy.

Or at least they are getting thick skin.

But it wasn't until Kris (Patty's sister) testified that people stopped what

they were doing and listened. Her words were from the soul but also from her

great wealth of knowledge. When Patty came up next that just knocked their

socks off.

That was years ago. Guess we have to get back on the track in the getting out

there. But the sad thing is that it takes time off from work. How many

people can do that? Not when you have a child with CHARGE. All sick and/or

personal time gets used up pretty quickly.

I wish there were a way more people could make a difference.

All of you might want to invite your legislator to your house, out for

coffee, or even just give a call to let them know you are there and want to be

helpful in any way.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Bonnie-

You are so right! We all need to develop a relationship with our

legislators. Just a phone call to let them know you exist, what challenges

your family faces, and which legislation or government programs are helping

you now -- and then follow-up calls when things are happening to affect

those programs or to initiate new programs you need.

You can join your state ARC to get updates on the legislation in your state

as it's happening. Just watching the newspapers won't do it -- cuz stuff

related to disability is not big news.

Parents' stories are compelling. Siblings, teachers, grandparents can all

share compelling stories. But the person who is actually affected by the

legislation has the biggest impact of all. It doesn't require going to the

capitol. You can meet with your legislators in their home offices. Once

you have a relationship going, let them know you are willing to be their " go

to person " when they have questions about how impending legislation will

affect families like yours. Every little thing we each do *does* make a

difference. It's all ripples. But if you don't do anything, well...

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Bonnie-

You are so right! We all need to develop a relationship with our

legislators. Just a phone call to let them know you exist, what challenges

your family faces, and which legislation or government programs are helping

you now -- and then follow-up calls when things are happening to affect

those programs or to initiate new programs you need.

You can join your state ARC to get updates on the legislation in your state

as it's happening. Just watching the newspapers won't do it -- cuz stuff

related to disability is not big news.

Parents' stories are compelling. Siblings, teachers, grandparents can all

share compelling stories. But the person who is actually affected by the

legislation has the biggest impact of all. It doesn't require going to the

capitol. You can meet with your legislators in their home offices. Once

you have a relationship going, let them know you are willing to be their " go

to person " when they have questions about how impending legislation will

affect families like yours. Every little thing we each do *does* make a

difference. It's all ripples. But if you don't do anything, well...

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

I totally agree. It IS ESSENTIAL that we all create a relationship with our

state officials. Part of 's personal story is just that. A candidate would

knock on our door, and either Andy or I would talk with him/her. This paid

off in unsuspected ways even early in 's saga. When IDEA was

being reauthorized, our folks showed up. Perhaps more importantly, when

the state plan was up for revision, not only did they show up but sat with

us parents. At that particular meeting, when I went up front to speak with

the acting director of whatever state agency about a totally small question,

she was obviously downright scared of me. It was most peculiar.

I actually had one wonderful senator ask me to propose legislation

(telling me that his staff could/would fine tune it) to further safe guard our

kids.

Now, as we are into the adult realm, I remember being told by Perkins'

folks to make these connections. Right now, the most important thing

seems to be contacts with the Dept. of Mental Health, at least in Missouri

(mind you, I'm asking everyone whether I should contact Jefferson City ---

so that they know I HAVE the contacts without having to be

confrontational).

For me, it's meant attending a few teas, writing accounts of , getting

on the legislaive email list to learn about bills, etc. It's really not hard at

all

--- and I hope to goodness that it pays off. I'm beginning to believe (as

opposed to think) that it will.

Martha --- blessed got up at 2:35 this morning despite Melatonin

and Trazedone. I trust I still manage to make some sense. Shall post

more on this sleep horror later.

Also, I apologize for not following through with the private emails I'd

promised. Please just hang in here with me. 2:30 ain't a good time to

begin any day at my age.

[Guest guest]

I totally agree. It IS ESSENTIAL that we all create a relationship with our

state officials. Part of 's personal story is just that. A candidate would

knock on our door, and either Andy or I would talk with him/her. This paid

off in unsuspected ways even early in 's saga. When IDEA was

being reauthorized, our folks showed up. Perhaps more importantly, when

the state plan was up for revision, not only did they show up but sat with

us parents. At that particular meeting, when I went up front to speak with

the acting director of whatever state agency about a totally small question,

she was obviously downright scared of me. It was most peculiar.

I actually had one wonderful senator ask me to propose legislation

(telling me that his staff could/would fine tune it) to further safe guard our

kids.

Now, as we are into the adult realm, I remember being told by Perkins'

folks to make these connections. Right now, the most important thing

seems to be contacts with the Dept. of Mental Health, at least in Missouri

(mind you, I'm asking everyone whether I should contact Jefferson City ---

so that they know I HAVE the contacts without having to be

confrontational).

For me, it's meant attending a few teas, writing accounts of , getting

on the legislaive email list to learn about bills, etc. It's really not hard at

all

--- and I hope to goodness that it pays off. I'm beginning to believe (as

opposed to think) that it will.

Martha --- blessed got up at 2:35 this morning despite Melatonin

and Trazedone. I trust I still manage to make some sense. Shall post

more on this sleep horror later.

Also, I apologize for not following through with the private emails I'd

promised. Please just hang in here with me. 2:30 ain't a good time to

begin any day at my age.

[Guest guest]

our legislators only care bout awb and iraq LOL aus wheat board for those

dont donno wat i mean its that and aresstint trerrorist and cronalla riot

people form three motnhs ago they dont care bout us deisabled hpeople here

dad says it boy does he hes tried to go to them about toher things to do

with me when our house old house was in danger of falling over and say that

i was chronicaly ill and they never listend hm crazy

>

> I totally agree. It IS ESSENTIAL that we all create a relationship with

> our

> state officials. Part of 's personal story is just that. A candidate

> would

> knock on our door, and either Andy or I would talk with him/her. This paid

> off in unsuspected ways even early in 's saga. When IDEA was

> being reauthorized, our folks showed up. Perhaps more importantly, when

> the state plan was up for revision, not only did they show up but sat with

> us parents. At that particular meeting, when I went up front to speak with

> the acting director of whatever state agency about a totally small

> question,

> she was obviously downright scared of me. It was most peculiar.

> I actually had one wonderful senator ask me to propose legislation

> (telling me that his staff could/would fine tune it) to further safe guard

> our

> kids.

> Now, as we are into the adult realm, I remember being told by Perkins'

> folks to make these connections. Right now, the most important thing

> seems to be contacts with the Dept. of Mental Health, at least in Missouri

> (mind you, I'm asking everyone whether I should contact Jefferson City ---

> so that they know I HAVE the contacts without having to be

> confrontational).

> For me, it's meant attending a few teas, writing accounts of ,

> getting

> on the legislaive email list to learn about bills, etc. It's really not

> hard at all

> --- and I hope to goodness that it pays off. I'm beginning to believe (as

> opposed to think) that it will.

> Martha --- blessed got up at 2:35 this morning despite Melatonin

> and Trazedone. I trust I still manage to make some sense. Shall post

> more on this sleep horror later.

> Also, I apologize for not following through with the private emails I'd

> promised. Please just hang in here with me. 2:30 ain't a good time to

> begin any day at my age.

>

>

>

>

>

>

>

[Guest guest]

our legislators only care bout awb and iraq LOL aus wheat board for those

dont donno wat i mean its that and aresstint trerrorist and cronalla riot

people form three motnhs ago they dont care bout us deisabled hpeople here

dad says it boy does he hes tried to go to them about toher things to do

with me when our house old house was in danger of falling over and say that

i was chronicaly ill and they never listend hm crazy

>

> I totally agree. It IS ESSENTIAL that we all create a relationship with

> our

> state officials. Part of 's personal story is just that. A candidate

> would

> knock on our door, and either Andy or I would talk with him/her. This paid

> off in unsuspected ways even early in 's saga. When IDEA was

> being reauthorized, our folks showed up. Perhaps more importantly, when

> the state plan was up for revision, not only did they show up but sat with

> us parents. At that particular meeting, when I went up front to speak with

> the acting director of whatever state agency about a totally small

> question,

> she was obviously downright scared of me. It was most peculiar.

> I actually had one wonderful senator ask me to propose legislation

> (telling me that his staff could/would fine tune it) to further safe guard

> our

> kids.

> Now, as we are into the adult realm, I remember being told by Perkins'

> folks to make these connections. Right now, the most important thing

> seems to be contacts with the Dept. of Mental Health, at least in Missouri

> (mind you, I'm asking everyone whether I should contact Jefferson City ---

> so that they know I HAVE the contacts without having to be

> confrontational).

> For me, it's meant attending a few teas, writing accounts of ,

> getting

> on the legislaive email list to learn about bills, etc. It's really not

> hard at all

> --- and I hope to goodness that it pays off. I'm beginning to believe (as

> opposed to think) that it will.

> Martha --- blessed got up at 2:35 this morning despite Melatonin

> and Trazedone. I trust I still manage to make some sense. Shall post

> more on this sleep horror later.

> Also, I apologize for not following through with the private emails I'd

> promised. Please just hang in here with me. 2:30 ain't a good time to

> begin any day at my age.

>

>

>

>

>

>

>

[Guest guest]

Ellen-

You're right. For all of history, Disability Rights is the one area that

takes absolute bottom priority! We've got to figure out how to change that!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Ellen-

You're right. For all of history, Disability Rights is the one area that

takes absolute bottom priority! We've got to figure out how to change that!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Ellen-

You're right. For all of history, Disability Rights is the one area that

takes absolute bottom priority! We've got to figure out how to change that!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ