CHARAGE Miranda Statement

[Guest guest]

Everyone, as I sit here and read I continually get frustrated, especially to

hear that no matter where you all live many people have the same educational

problems we have had. Through Patty's life we were so alone in our educational

battles. Though she received many services one never really understood the

other. It was hard or frustrating when it should not have been. It was such a

battle. Too much time was wasted. You can't get time back. Patty did have

wonderful educators here and there ho stepped out of the box and tired new

things. But they didn't have to. The answer was out there waiting for us to

find

it. When Patty got the diagnosis at age 14 she met that criteria of

deaf/blind. Ugh! Like that was newk?! But with that she was finally connected

with

Perkins -and Outreach which is located there.

I know I have talked about them so many times but I have to say they were

vital to me to understand Patty. They put the pieces together for us. She

felt understood, proud and found confidence within herself as a learner but

more importantly as a person. And finally there were true specialists who

understood CHARGE and her education. We were lucky to have found them but we

remain

disappointed that teachers in the past could have had the guidance they

needed to appropriately educate Patty. By the way, the medical interventions

she

has had has helped her live, Eduction gives her a life. And the two go

together. Our children need a life.

Patty graduated high school when there were those who said she couldn't

or wouldn't. But with her years we learned so much. You all shouldn't have to

go through that pain and frustration. There is an answer. It is Perkins, it

is Outreach. The answer is there. We all need to get together to somehow

make it known. By the was, Patty is called mild on the CHARGE spectrum though

she has almost every criteria, and those at Perkins could work with all of

that. And I have to say they have other children, many other children, with

CHARGE

on just about all spectrums. We should take what they have learned, what

they know, and use it for all our chiden everywhere.

Again I am sorry I write books when I post but I honestly believe there is

an answer to the CHARGE Miranda Statement-

It's Perkins.

Bonnie, Mom to a 22, Patty 20 CHARGE and moving slowly on with her

life, and wife to

In a message dated 9/15/2004 12:52:23 PM Eastern Standard Time,

myerstl@... writes:

It's in the CHARGE Accounts Newsletter, Summer 2004, Vol. 14 No. 2.

" CHARGE Syndrome Miranda Statement "

I am the parent of a child with very complex problems.

I need information about my child that may be time-consuming and difficult

to obtain.

My child needs coordinated services from health care professionals and

educators who know or are willing to learn about CHARGE syndrome.

If you cannot afford the time or do not have the capability to provide these

special services, please refer us to someone who can.

Anonymous 1997

[Guest guest]

Could I get a copy of the CHARGE Miranda Statement please? Thank you.

Crickmore Mom to ph 22yr old cHaRGE'r

[Guest guest]

Bonnie, everything you write makes sense and always helps....it's just using

your advice in time--I'm thinking we need a trip to perkins....but he's

doing well now. But, what if we are all sissing something they could see

plain as day?

today has already been a long day and it' only 7:45 am, been up for and hour

and a half--with tim --he's succeeded to throw up his breakfast he OVER

stuffed into his mouth all over his clothes. whined and cried " I can't "

about getting new clothes. fought me when I said they don't match, get new

ones, knocked down liam's train set, refused to eat anymore breakfast,

fought me to get his shoes on, drug his feet to get the lens in, is in no

way shape or form going to brush his teeth, and at this moment squishing a

plastic bag around----OH, HOW I HATE THAT SOUND!!! it's like nails on a

chalk board!! and repeating everything he says at least 5 times.....it's

going to be a long day I fear!!

hopefully he can get it together and so can I, after we take the other 2 to

school. we have to go get cub scout uniforms today too. ok, I'm done

complaining--sorry, just needed to vent!!

hers's hoping we all have a great day!!--and it rains, don't feel like doing

soccer practice tonight!!

maria

CHARAGE Miranda Statement

> Everyone, as I sit here and read I continually get frustrated, especially

to

> hear that no matter where you all live many people have the same

educational

> problems we have had. Through Patty's life we were so alone in our

educational

> battles. Though she received many services one never really understood the

> other. It was hard or frustrating when it should not have been. It was

such a

> battle. Too much time was wasted. You can't get time back. Patty did

have

> wonderful educators here and there ho stepped out of the box and tired new

> things. But they didn't have to. The answer was out there waiting for us

to find

> it. When Patty got the diagnosis at age 14 she met that criteria of

> deaf/blind. Ugh! Like that was newk?! But with that she was finally

connected with

> Perkins -and Outreach which is located there.

> I know I have talked about them so many times but I have to say they

were

> vital to me to understand Patty. They put the pieces together for us.

She

> felt understood, proud and found confidence within herself as a learner

but

> more importantly as a person. And finally there were true specialists who

> understood CHARGE and her education. We were lucky to have found them but

we remain

> disappointed that teachers in the past could have had the guidance they

> needed to appropriately educate Patty. By the way, the medical

interventions she

> has had has helped her live, Eduction gives her a life. And the two go

> together. Our children need a life.

> Patty graduated high school when there were those who said she

couldn't

> or wouldn't. But with her years we learned so much. You all shouldn't

have to

> go through that pain and frustration. There is an answer. It is Perkins,

it

> is Outreach. The answer is there. We all need to get together to somehow

> make it known. By the was, Patty is called mild on the CHARGE spectrum

though

> she has almost every criteria, and those at Perkins could work with all of

> that. And I have to say they have other children, many other children,

with CHARGE

> on just about all spectrums. We should take what they have learned, what

> they know, and use it for all our chiden everywhere.

>

> Again I am sorry I write books when I post but I honestly believe there

is

> an answer to the CHARGE Miranda Statement-

>

> It's Perkins.

>

> Bonnie, Mom to a 22, Patty 20 CHARGE and moving slowly on with her

> life, and wife to

>

> In a message dated 9/15/2004 12:52:23 PM Eastern Standard Time,

> myerstl@... writes:

> It's in the CHARGE Accounts Newsletter, Summer 2004, Vol. 14 No. 2.

>

> " CHARGE Syndrome Miranda Statement "

>

> I am the parent of a child with very complex problems.

>

> I need information about my child that may be time-consuming and difficult

> to obtain.

>

> My child needs coordinated services from health care professionals and

> educators who know or are willing to learn about CHARGE syndrome.

>

> If you cannot afford the time or do not have the capability to provide

these

> special services, please refer us to someone who can.

>

> Anonymous 1997

>

>

>

[Guest guest]

-

Aubrie is also doing very well. But we are still looking forward to

Perkins. There are little unanswered questions and frustrations. I

know there are things we're missing simply because we don't know. We

are going because we're going to be in that area of the country anyway.

If we had to make a special trip, who knows how long it would be before

I made the effort for that to happen. But I wanted to put a bug in your

ear that even our kids doing well can use more help. Even doing " well "

isn't near doing things as if there is no CHARGE. That's the goal I'm

looking for -- to be functioning as close to non-CHARGE as possible. I

realize she'll always have CHARGE and I accept all that that means, but

I want to minimize the effects and maximize her potential in all areas.

Does that make sense? I'm not sure I'm saying it clearly.

Michele W

[Guest guest]

Vent all you want. We all understand. I had a really tough day at school and am

stressed to the max. I am unwinding to tons of CHARGE emails. I feel so " at

home " when I come home from work and read the list.

Lynn

CHARAGE Miranda Statement

> Everyone, as I sit here and read I continually get frustrated, especially

to

> hear that no matter where you all live many people have the same

educational

> problems we have had. Through Patty's life we were so alone in our

educational

> battles. Though she received many services one never really understood the

> other. It was hard or frustrating when it should not have been. It was

such a

> battle. Too much time was wasted. You can't get time back. Patty did

have

> wonderful educators here and there ho stepped out of the box and tired new

> things. But they didn't have to. The answer was out there waiting for us

to find

> it. When Patty got the diagnosis at age 14 she met that criteria of

> deaf/blind. Ugh! Like that was newk?! But with that she was finally

connected with

> Perkins -and Outreach which is located there.

> I know I have talked about them so many times but I have to say they

were

> vital to me to understand Patty. They put the pieces together for us.

She

> felt understood, proud and found confidence within herself as a learner

but

> more importantly as a person. And finally there were true specialists who

> understood CHARGE and her education. We were lucky to have found them but

we remain

> disappointed that teachers in the past could have had the guidance they

> needed to appropriately educate Patty. By the way, the medical

interventions she

> has had has helped her live, Eduction gives her a life. And the two go

> together. Our children need a life.

> Patty graduated high school when there were those who said she

couldn't

> or wouldn't. But with her years we learned so much. You all shouldn't

have to

> go through that pain and frustration. There is an answer. It is Perkins,

it

> is Outreach. The answer is there. We all need to get together to somehow

> make it known. By the was, Patty is called mild on the CHARGE spectrum

though

> she has almost every criteria, and those at Perkins could work with all of

> that. And I have to say they have other children, many other children,

with CHARGE

> on just about all spectrums. We should take what they have learned, what

> they know, and use it for all our chiden everywhere.

>

> Again I am sorry I write books when I post but I honestly believe there

is

> an answer to the CHARGE Miranda Statement-

>

> It's Perkins.

>

> Bonnie, Mom to a 22, Patty 20 CHARGE and moving slowly on with her

> life, and wife to

>

> In a message dated 9/15/2004 12:52:23 PM Eastern Standard Time,

> myerstl@... writes:

> It's in the CHARGE Accounts Newsletter, Summer 2004, Vol. 14 No. 2.

>

> " CHARGE Syndrome Miranda Statement "

>

> I am the parent of a child with very complex problems.

>

> I need information about my child that may be time-consuming and difficult

> to obtain.

>

> My child needs coordinated services from health care professionals and

> educators who know or are willing to learn about CHARGE syndrome.

>

> If you cannot afford the time or do not have the capability to provide

these

> special services, please refer us to someone who can.

>

> Anonymous 1997

>

>

>