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,

I agree. I have a hearing impaired child in my classroom, and I am so

excited that my room finally gets an amplification system as it will

benefit ALL the kids. I am on both sides of the fence as a parent of a

HI kid and as a teacher...

G

> What about a free field system? That's what Kennedy uses.... It's

> four

> speakers mounted around the room and the TEACHER wears the microphone,

> Aubrie doesn't have to wear anything and it benefits all the kids.

> Most

> teachers love them because it helps other kids focus also.

> Weir

> Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to

> Graeme.

> New Brunswick, Canada

> Weir homepage: http://ca.geocities.com/weirfamilyrogers

> CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

>

> help on fm systems

>

>

> Help! Our school district has me in fits about Aubrie's FM unit.

> Short

> story is that we are going to order something new. The decision is

> between a wireless Lexus and a wired/receiver-pack-on-your-body

> Solaris. The wireless, of course, is more expensive. However,

> Aubrie

> is going to be 7 and is beginning to notice her differences.

> Wouldn't

> it be nice if she didn't have this contraption on to show everyone

> just

> how different she is? And wouldn't it be nice if a little girl could

> not have her outfits mangled by the harness? Ok, I know those are

> the

> most " appropriate " reasons for the decision. Anyone have experience

> with either type of unit and/or making this kind decision that will

> help

> me in deciding what is really best for Aubrie and how to persuade the

> district to get it (whichever it is)? I am leaning towards wireless,

> but if there are reasons that it's really not the best choice, I

> need to

> know them.

>

> Thanks in advance for the continued support!!

>

> Michele W

> mom to Aubrie 6 yrs -- zombie Robomom is my new name after 3

> sleepless

> nights -- I don't know how some of you guys function on little

> sleep &

> constant stress-- what a nightmare I am!

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

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Hi Michele

has the phonic ear...but the service provider ordered the FM and

hearing aid combination...it solved the problem of compatability....it is

wireless

and in the long run it saved money for the school...the whole battery

issue...they would have to replace the batteries in his private aides everyday (

runs on a very small battery) where as the FM/ha system runs on a much more

powerful battery and lasts almost a week with daily use.

They still come in all the cool colors and was able to customize the

look. Our school is very particular about what is theirs and what they will

pay for...I was concerned if they piggybacked his private aides and some how

they were damaged at school if they would pay for replacments...well we went

around on that so we agreed that they had their system and we had 's at

home...however our attorney was able to point out that needed the FM for

use during after school activities...etc so we are able to use for community

type activities also...

Some things that our school staff and the new service provider did not know

about the wireless FM....there is feedback from some school equipment...When

teacher is walking about the class and goes by the computer screen and it is

on gets a buzzing in his ear and also when she would walk near the PA

system.So the staff needs to be aware where they are walking... learned to

ask her to move ...it took a year for her to " get it " .

Good luck

Ellen

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Hi Michele

has the phonic ear...but the service provider ordered the FM and

hearing aid combination...it solved the problem of compatability....it is

wireless

and in the long run it saved money for the school...the whole battery

issue...they would have to replace the batteries in his private aides everyday (

runs on a very small battery) where as the FM/ha system runs on a much more

powerful battery and lasts almost a week with daily use.

They still come in all the cool colors and was able to customize the

look. Our school is very particular about what is theirs and what they will

pay for...I was concerned if they piggybacked his private aides and some how

they were damaged at school if they would pay for replacments...well we went

around on that so we agreed that they had their system and we had 's at

home...however our attorney was able to point out that needed the FM for

use during after school activities...etc so we are able to use for community

type activities also...

Some things that our school staff and the new service provider did not know

about the wireless FM....there is feedback from some school equipment...When

teacher is walking about the class and goes by the computer screen and it is

on gets a buzzing in his ear and also when she would walk near the PA

system.So the staff needs to be aware where they are walking... learned to

ask her to move ...it took a year for her to " get it " .

Good luck

Ellen

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Michele,

When Karlee was in 1st grade we purchased our own wireless system because at

that time the state provided system had wires. We used that system through

8th grade. Last year the Northern Illinois Association provided a wireless

system for us. It has worked great. Is the state providing a system or are

you talking about buying one yourself? We are in Illinois, so I would think

services would be consistent for the state?

from IL (Karlee 16 years)

Re: help on fm systems

>Yuka -

>That's what we're looking for -- no wires or boxes on Aubrie. I hadn't

>thought about the extra drain on her hearing aid batteries, but I guess

>that would be worth it. Thanks for sharing 's experience. I'm

>sorry to hear his has been unreliable. Does he know the brand? Since

>Aubrie's in elementary school, she won't have to cart it around too much

>-- one classroom and then her therapies, music, PE, etc.

>

>Michele W

>

>

>

>

>Membership of this email support groups 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 CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org

>7th International

>CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

>www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

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Michele,

When Karlee was in 1st grade we purchased our own wireless system because at

that time the state provided system had wires. We used that system through

8th grade. Last year the Northern Illinois Association provided a wireless

system for us. It has worked great. Is the state providing a system or are

you talking about buying one yourself? We are in Illinois, so I would think

services would be consistent for the state?

from IL (Karlee 16 years)

Re: help on fm systems

>Yuka -

>That's what we're looking for -- no wires or boxes on Aubrie. I hadn't

>thought about the extra drain on her hearing aid batteries, but I guess

>that would be worth it. Thanks for sharing 's experience. I'm

>sorry to hear his has been unreliable. Does he know the brand? Since

>Aubrie's in elementary school, she won't have to cart it around too much

>-- one classroom and then her therapies, music, PE, etc.

>

>Michele W

>

>

>

>

>Membership of this email support groups 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 CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org

>7th International

>CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

>www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

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Michele,

When Karlee was in 1st grade we purchased our own wireless system because at

that time the state provided system had wires. We used that system through

8th grade. Last year the Northern Illinois Association provided a wireless

system for us. It has worked great. Is the state providing a system or are

you talking about buying one yourself? We are in Illinois, so I would think

services would be consistent for the state?

from IL (Karlee 16 years)

Re: help on fm systems

>Yuka -

>That's what we're looking for -- no wires or boxes on Aubrie. I hadn't

>thought about the extra drain on her hearing aid batteries, but I guess

>that would be worth it. Thanks for sharing 's experience. I'm

>sorry to hear his has been unreliable. Does he know the brand? Since

>Aubrie's in elementary school, she won't have to cart it around too much

>-- one classroom and then her therapies, music, PE, etc.

>

>Michele W

>

>

>

>

>Membership of this email support groups 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 CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org

>7th International

>CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

>www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

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Ellen-

Very interesting. I would love to have the FM system available at other

events -- like dance class. But I've never stretched it that far. And

I never thought about the possibility of her aids being damaged by the

FM system-- or the frequent use. How did you get them to pay for the

HA batteries? [Anyone else get the school to pay for the frequently

replaced batteries??] Sounds like a good solution -- but one I hadn't

thought of and we've got the old snowball rolling. Hmmm...

Michele

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Ellen-

Very interesting. I would love to have the FM system available at other

events -- like dance class. But I've never stretched it that far. And

I never thought about the possibility of her aids being damaged by the

FM system-- or the frequent use. How did you get them to pay for the

HA batteries? [Anyone else get the school to pay for the frequently

replaced batteries??] Sounds like a good solution -- but one I hadn't

thought of and we've got the old snowball rolling. Hmmm...

Michele

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Ellen-

Very interesting. I would love to have the FM system available at other

events -- like dance class. But I've never stretched it that far. And

I never thought about the possibility of her aids being damaged by the

FM system-- or the frequent use. How did you get them to pay for the

HA batteries? [Anyone else get the school to pay for the frequently

replaced batteries??] Sounds like a good solution -- but one I hadn't

thought of and we've got the old snowball rolling. Hmmm...

Michele

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tim has the same thing--of course it's a deaf school so they are set up for

that.

maria

help on fm systems

>

>

> Help! Our school district has me in fits about Aubrie's FM unit. Short

> story is that we are going to order something new. The decision is

> between a wireless Lexus and a wired/receiver-pack-on-your-body

> Solaris. The wireless, of course, is more expensive. However, Aubrie

> is going to be 7 and is beginning to notice her differences. Wouldn't

> it be nice if she didn't have this contraption on to show everyone just

> how different she is? And wouldn't it be nice if a little girl could

> not have her outfits mangled by the harness? Ok, I know those are the

> most " appropriate " reasons for the decision. Anyone have experience

> with either type of unit and/or making this kind decision that will help

> me in deciding what is really best for Aubrie and how to persuade the

> district to get it (whichever it is)? I am leaning towards wireless,

> but if there are reasons that it's really not the best choice, I need to

> know them.

>

> Thanks in advance for the continued support!!

>

> Michele W

> mom to Aubrie 6 yrs -- zombie Robomom is my new name after 3 sleepless

> nights -- I don't know how some of you guys function on little sleep &

> constant stress-- what a nightmare I am!

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

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tim has the same thing--of course it's a deaf school so they are set up for

that.

maria

help on fm systems

>

>

> Help! Our school district has me in fits about Aubrie's FM unit. Short

> story is that we are going to order something new. The decision is

> between a wireless Lexus and a wired/receiver-pack-on-your-body

> Solaris. The wireless, of course, is more expensive. However, Aubrie

> is going to be 7 and is beginning to notice her differences. Wouldn't

> it be nice if she didn't have this contraption on to show everyone just

> how different she is? And wouldn't it be nice if a little girl could

> not have her outfits mangled by the harness? Ok, I know those are the

> most " appropriate " reasons for the decision. Anyone have experience

> with either type of unit and/or making this kind decision that will help

> me in deciding what is really best for Aubrie and how to persuade the

> district to get it (whichever it is)? I am leaning towards wireless,

> but if there are reasons that it's really not the best choice, I need to

> know them.

>

> Thanks in advance for the continued support!!

>

> Michele W

> mom to Aubrie 6 yrs -- zombie Robomom is my new name after 3 sleepless

> nights -- I don't know how some of you guys function on little sleep &

> constant stress-- what a nightmare I am!

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

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tim has the same thing--of course it's a deaf school so they are set up for

that.

maria

help on fm systems

>

>

> Help! Our school district has me in fits about Aubrie's FM unit. Short

> story is that we are going to order something new. The decision is

> between a wireless Lexus and a wired/receiver-pack-on-your-body

> Solaris. The wireless, of course, is more expensive. However, Aubrie

> is going to be 7 and is beginning to notice her differences. Wouldn't

> it be nice if she didn't have this contraption on to show everyone just

> how different she is? And wouldn't it be nice if a little girl could

> not have her outfits mangled by the harness? Ok, I know those are the

> most " appropriate " reasons for the decision. Anyone have experience

> with either type of unit and/or making this kind decision that will help

> me in deciding what is really best for Aubrie and how to persuade the

> district to get it (whichever it is)? I am leaning towards wireless,

> but if there are reasons that it's really not the best choice, I need to

> know them.

>

> Thanks in advance for the continued support!!

>

> Michele W

> mom to Aubrie 6 yrs -- zombie Robomom is my new name after 3 sleepless

> nights -- I don't know how some of you guys function on little sleep &

> constant stress-- what a nightmare I am!

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

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-

Our school district is buying it. Who has bought them for you? It'd be

awesome if we could get funding to buy it ourselves for use at school

and other times when it's needed. As it is, the school will own it and

we will not have use for events outside of school.

Michele

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-

Our school district is buying it. Who has bought them for you? It'd be

awesome if we could get funding to buy it ourselves for use at school

and other times when it's needed. As it is, the school will own it and

we will not have use for events outside of school.

Michele

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-

Our school district is buying it. Who has bought them for you? It'd be

awesome if we could get funding to buy it ourselves for use at school

and other times when it's needed. As it is, the school will own it and

we will not have use for events outside of school.

Michele

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just my $0.02 - when Elliot ('s younger brother) had a hard of hearing

boy mainstreamed into his fourth grade class, they used a system like this.

There were some problems as it was not set up well. There was feedback and

the sound quality was often distorted. It was a loud classroom, and the

microphone picked up alot of the environmental sounds and amplified them as

well. When we discussed options for , he was already in middle

school - and moving a field system around from class to class was

impractical. However, I also received a strong endorsement from the

audiologist that the fm system offered the best advantage of

supplementing his audio input of the information most necessary to him in

the learning environment - the teacher - and really, it is the teacher who

is the most affected - the microphone is much more of an accessory than the

boots on the hearing aids......

best always,

yuka

RE: help on fm systems

> What about a free field system? That's what Kennedy uses.... It's four

> speakers mounted around the room and the TEACHER wears the microphone,

> Aubrie doesn't have to wear anything and it benefits all the kids. Most

> teachers love them because it helps other kids focus also.

> Weir

> Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

> New Brunswick, Canada

> Weir homepage: http://ca.geocities.com/weirfamilyrogers

> CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

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just my $0.02 - when Elliot ('s younger brother) had a hard of hearing

boy mainstreamed into his fourth grade class, they used a system like this.

There were some problems as it was not set up well. There was feedback and

the sound quality was often distorted. It was a loud classroom, and the

microphone picked up alot of the environmental sounds and amplified them as

well. When we discussed options for , he was already in middle

school - and moving a field system around from class to class was

impractical. However, I also received a strong endorsement from the

audiologist that the fm system offered the best advantage of

supplementing his audio input of the information most necessary to him in

the learning environment - the teacher - and really, it is the teacher who

is the most affected - the microphone is much more of an accessory than the

boots on the hearing aids......

best always,

yuka

RE: help on fm systems

> What about a free field system? That's what Kennedy uses.... It's four

> speakers mounted around the room and the TEACHER wears the microphone,

> Aubrie doesn't have to wear anything and it benefits all the kids. Most

> teachers love them because it helps other kids focus also.

> Weir

> Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

> New Brunswick, Canada

> Weir homepage: http://ca.geocities.com/weirfamilyrogers

> CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

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just my $0.02 - when Elliot ('s younger brother) had a hard of hearing

boy mainstreamed into his fourth grade class, they used a system like this.

There were some problems as it was not set up well. There was feedback and

the sound quality was often distorted. It was a loud classroom, and the

microphone picked up alot of the environmental sounds and amplified them as

well. When we discussed options for , he was already in middle

school - and moving a field system around from class to class was

impractical. However, I also received a strong endorsement from the

audiologist that the fm system offered the best advantage of

supplementing his audio input of the information most necessary to him in

the learning environment - the teacher - and really, it is the teacher who

is the most affected - the microphone is much more of an accessory than the

boots on the hearing aids......

best always,

yuka

RE: help on fm systems

> What about a free field system? That's what Kennedy uses.... It's four

> speakers mounted around the room and the TEACHER wears the microphone,

> Aubrie doesn't have to wear anything and it benefits all the kids. Most

> teachers love them because it helps other kids focus also.

> Weir

> Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

> New Brunswick, Canada

> Weir homepage: http://ca.geocities.com/weirfamilyrogers

> CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

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Yuka -

That's what I decided after giving it some thought. In a school for the

deaf where all rooms are set up for it, that would be good. But in our

case, Aubrie needs to take her unit with her from place to place.

Michele

> just my $0.02 - when Elliot ('s younger brother) had a hard of

> hearing

> boy mainstreamed into his fourth grade class, they used a system like

> this.

> There were some problems as it was not set up well. There was

> feedback and

> the sound quality was often distorted. It was a loud classroom, and the

> microphone picked up alot of the environmental sounds and amplified

> them as

> well. When we discussed options for , he was already in middle

> school - and moving a field system around from class to class was

> impractical. However, I also received a strong endorsement from the

> audiologist that the fm system offered the best advantage of

> supplementing his audio input of the information most necessary to him in

> the learning environment - the teacher - and really, it is the teacher who

> is the most affected - the microphone is much more of an accessory

> than the

> boots on the hearing aids......

> best always,

> yuka

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Yuka -

That's what I decided after giving it some thought. In a school for the

deaf where all rooms are set up for it, that would be good. But in our

case, Aubrie needs to take her unit with her from place to place.

Michele

> just my $0.02 - when Elliot ('s younger brother) had a hard of

> hearing

> boy mainstreamed into his fourth grade class, they used a system like

> this.

> There were some problems as it was not set up well. There was

> feedback and

> the sound quality was often distorted. It was a loud classroom, and the

> microphone picked up alot of the environmental sounds and amplified

> them as

> well. When we discussed options for , he was already in middle

> school - and moving a field system around from class to class was

> impractical. However, I also received a strong endorsement from the

> audiologist that the fm system offered the best advantage of

> supplementing his audio input of the information most necessary to him in

> the learning environment - the teacher - and really, it is the teacher who

> is the most affected - the microphone is much more of an accessory

> than the

> boots on the hearing aids......

> best always,

> yuka

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Yuka -

That's what I decided after giving it some thought. In a school for the

deaf where all rooms are set up for it, that would be good. But in our

case, Aubrie needs to take her unit with her from place to place.

Michele

> just my $0.02 - when Elliot ('s younger brother) had a hard of

> hearing

> boy mainstreamed into his fourth grade class, they used a system like

> this.

> There were some problems as it was not set up well. There was

> feedback and

> the sound quality was often distorted. It was a loud classroom, and the

> microphone picked up alot of the environmental sounds and amplified

> them as

> well. When we discussed options for , he was already in middle

> school - and moving a field system around from class to class was

> impractical. However, I also received a strong endorsement from the

> audiologist that the fm system offered the best advantage of

> supplementing his audio input of the information most necessary to him in

> the learning environment - the teacher - and really, it is the teacher who

> is the most affected - the microphone is much more of an accessory

> than the

> boots on the hearing aids......

> best always,

> yuka

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Michele,

" Isn't it the LD specialists job to make available all of the resources that can

help a child? "

YES, YES AND TRIPLE YES!!!!!! " The whole team including the parent should

be writing the IEP with all needed services, modifications and adaptations .

What about IDEA ? The book of parents rights etc. There are laws!

It makes me so mad when I hear of situations like this. It gives those of us

sp. ed teacher's that do our best to do our job right for our student'a a bad

name. That makes me mad. I fight for my student's needs tooth and nail with my

system that can't pass school levys and is broke.

I will climb down off my soap box now. :o)

Lynn

Re: help on fm systems

Lynn-

Glad to provide your chuckle for the night :-D

Sounds like a great day tomorrow. I look forward to times like that

with my adult kids.

I got the recommendation letter from the DB specialist. She's great!

You know, I forget sometimes to consult her first. She's got the total

pic of Aubrie where everyone else considers her from the perspective of

any kid. She pointed out the issues with Aubrie's hearing and vision

and other difficulties that interfere with moving etc and how the wires

and body unit would be an impediment to her where the wireless would

allow freedom of movement and less interference. So I think it's going

to be fine. Just too bad I have to do so much work to get things done

right. Makes you wonder who is the professional here. Aren't they

supposed to be figuring out the best thing?

I got my hair done today. My hairdresser's son is LD in reading. Years

ago I pointed out that books on tape, having tests read to him, etc were

options. Of course, she didn't know that. She had just talked with

another person with a child in the same situation. Isn't it the LD

specialists job to make available all of the resources that can help a

child? Instead, they just do the few things the district offers easily

and negates to educate the students and parents of other options. Argh!

Michele W

Membership of this email support groups 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 CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

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Michele,

" Isn't it the LD specialists job to make available all of the resources that can

help a child? "

YES, YES AND TRIPLE YES!!!!!! " The whole team including the parent should

be writing the IEP with all needed services, modifications and adaptations .

What about IDEA ? The book of parents rights etc. There are laws!

It makes me so mad when I hear of situations like this. It gives those of us

sp. ed teacher's that do our best to do our job right for our student'a a bad

name. That makes me mad. I fight for my student's needs tooth and nail with my

system that can't pass school levys and is broke.

I will climb down off my soap box now. :o)

Lynn

Re: help on fm systems

Lynn-

Glad to provide your chuckle for the night :-D

Sounds like a great day tomorrow. I look forward to times like that

with my adult kids.

I got the recommendation letter from the DB specialist. She's great!

You know, I forget sometimes to consult her first. She's got the total

pic of Aubrie where everyone else considers her from the perspective of

any kid. She pointed out the issues with Aubrie's hearing and vision

and other difficulties that interfere with moving etc and how the wires

and body unit would be an impediment to her where the wireless would

allow freedom of movement and less interference. So I think it's going

to be fine. Just too bad I have to do so much work to get things done

right. Makes you wonder who is the professional here. Aren't they

supposed to be figuring out the best thing?

I got my hair done today. My hairdresser's son is LD in reading. Years

ago I pointed out that books on tape, having tests read to him, etc were

options. Of course, she didn't know that. She had just talked with

another person with a child in the same situation. Isn't it the LD

specialists job to make available all of the resources that can help a

child? Instead, they just do the few things the district offers easily

and negates to educate the students and parents of other options. Argh!

Michele W

Membership of this email support groups 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 CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

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and ,

As a sp. ed. teacher who sometimes has HI students and parent of a HI kid ,

tell me more about the room amplification system. I have never heard of it. Our

public school only sees a handful of HI kids now. When went through she

was the ONLY HI kid the whole time. She was lucky not to need an FM system.

Preferencial seating worked for her.

Lynn

help on fm systems

>

>

> Help! Our school district has me in fits about Aubrie's FM unit.

> Short

> story is that we are going to order something new. The decision is

> between a wireless Lexus and a wired/receiver-pack-on-your-body

> Solaris. The wireless, of course, is more expensive. However,

> Aubrie

> is going to be 7 and is beginning to notice her differences.

> Wouldn't

> it be nice if she didn't have this contraption on to show everyone

> just

> how different she is? And wouldn't it be nice if a little girl could

> not have her outfits mangled by the harness? Ok, I know those are

> the

> most " appropriate " reasons for the decision. Anyone have experience

> with either type of unit and/or making this kind decision that will

> help

> me in deciding what is really best for Aubrie and how to persuade the

> district to get it (whichever it is)? I am leaning towards wireless,

> but if there are reasons that it's really not the best choice, I

> need to

> know them.

>

> Thanks in advance for the continued support!!

>

> Michele W

> mom to Aubrie 6 yrs -- zombie Robomom is my new name after 3

> sleepless

> nights -- I don't know how some of you guys function on little

> sleep &

> constant stress-- what a nightmare I am!

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

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There is a way to become an advocate....through grants. I am working with an

individual who had a three year grant to advocate and create " plans " to take

special needs kids/teens/young adults through adulthood. She is helping me with

's ARD's and she is awesome--just the " fight " in her and how she reasonably

and firmly states how our kids have rights, (like playing on a safe playground)

just like everyone else. So much of local/state benefits are who you know and

my advocate knows the process and how to work through it. It is definitely a

needed role.

Lori Myers

-------------- Original message --------------

> That's what I thought. So -- I wish there was a way to be an advocate

> for families and get paid. I wouldn't feel right charging families

> direct cuz I know family resources are already stretched. And there is

> limited state funding for advocates. I'd be a great job. Could I start

> my own not-for-profit? -- Just dreaming... add it to all the other

> zillion things I'd like to do " when I grow up " .

>

> Michele W

> Aubrie's mom

>

> >

> >

> > " Isn't it the LD specialists job to make available all of the

> > resources that can help a child? "

> >

> > YES, YES AND TRIPLE YES!!!!!! "

>

>

>

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information

> will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact

> CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

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