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Re: cochlear implants/speech

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Jeannie,

Does McKenzie already sign? If she doesn't, I would suggest considering cued

speech. We use it because it parallels the same goals of an implant kid for

spoken language. And it helps tremendously with language development and reading

and writing. I'm a big fan, I guess you can tell.

We have been cuuing for 3 years and although Bryce is still very delayed in

language, it gives a wonderful foundation for language. We got an implant 4

years ago but it only started working for him about 8 months ago. So he still

can't process speech. (Except a few common phrases.) But Bryce, like McKenzie is

far more delayed on expressive language than in receptive language. I wish I

could understand what that' s about. He doesn't want to use his words unless he

has to.

Deedee

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Jeannie,

Does McKenzie already sign? If she doesn't, I would suggest considering cued

speech. We use it because it parallels the same goals of an implant kid for

spoken language. And it helps tremendously with language development and reading

and writing. I'm a big fan, I guess you can tell.

We have been cuuing for 3 years and although Bryce is still very delayed in

language, it gives a wonderful foundation for language. We got an implant 4

years ago but it only started working for him about 8 months ago. So he still

can't process speech. (Except a few common phrases.) But Bryce, like McKenzie is

far more delayed on expressive language than in receptive language. I wish I

could understand what that' s about. He doesn't want to use his words unless he

has to.

Deedee

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It appalls me that people still have the belief that learning sign inhibits

speech development. Good luck fighting that one, but I would FIGHT it.

Kim L

cochlear implants/speech

Hi,

I'm hoping someone may have some input regarding our speech/language issues.

My daughter MacKenzie is 6 and has had a Cochlear Implant for 4 years. She

hears very well (20 - 30 dB) in a closed setting. Her speech is very delayed

though. This doesn't necessarily bother me, but we're having some issues

with getting educational supports.

Our Special Education Authority makes the recommendations to our school

board for what our kids need. MacKenzie is starting grade 1 and has a great

vocabulary base but no real language. She is definately missing conversation

and no doubt will begin to fall behind.

A language support worker, that signs, is the logical next step to me. This

would ready her for an interpreter maybe next year.

The director of the Special Education Authority feels that we should wait to

see what MacKenzie will do with her voice. She's made modest gains in sound

development this year, but has no real recognizable speech.

I think it's a true crime to hold her back on the basis that she MAY speak

someday. He has the notion that more sign may inhibit her oral language.

She also has uni-lateral laryngeal palsy and many oral motor issues!

Any suggestions?

Jeanie Colp

mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary 10

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----

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It appalls me that people still have the belief that learning sign inhibits

speech development. Good luck fighting that one, but I would FIGHT it.

Kim L

cochlear implants/speech

Hi,

I'm hoping someone may have some input regarding our speech/language issues.

My daughter MacKenzie is 6 and has had a Cochlear Implant for 4 years. She

hears very well (20 - 30 dB) in a closed setting. Her speech is very delayed

though. This doesn't necessarily bother me, but we're having some issues

with getting educational supports.

Our Special Education Authority makes the recommendations to our school

board for what our kids need. MacKenzie is starting grade 1 and has a great

vocabulary base but no real language. She is definately missing conversation

and no doubt will begin to fall behind.

A language support worker, that signs, is the logical next step to me. This

would ready her for an interpreter maybe next year.

The director of the Special Education Authority feels that we should wait to

see what MacKenzie will do with her voice. She's made modest gains in sound

development this year, but has no real recognizable speech.

I think it's a true crime to hold her back on the basis that she MAY speak

someday. He has the notion that more sign may inhibit her oral language.

She also has uni-lateral laryngeal palsy and many oral motor issues!

Any suggestions?

Jeanie Colp

mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary 10

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

----

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I wish Patty continued with sign all her life. Her life is such a story but

by the age of 3 she became totally oral. I have to say that at the age of 18

when she learned sign again I could " see " how much she was missing in many

areas especially educationally even though she is totally oral. She has become

the queen of making it appear she is hearing and understanding everything when

in reality she misses out on tons and had to fill in the blanks herself. I

have learned how to sit and interpret conversations to her so she can understand

conversations.... Again I feel badly about how much she has missed.

Sign is too important in her life now. Wish we did it earlier.

Bonnie

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I wish Patty continued with sign all her life. Her life is such a story but

by the age of 3 she became totally oral. I have to say that at the age of 18

when she learned sign again I could " see " how much she was missing in many

areas especially educationally even though she is totally oral. She has become

the queen of making it appear she is hearing and understanding everything when

in reality she misses out on tons and had to fill in the blanks herself. I

have learned how to sit and interpret conversations to her so she can understand

conversations.... Again I feel badly about how much she has missed.

Sign is too important in her life now. Wish we did it earlier.

Bonnie

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I wish I used sign all the time. When I did for grade 6 and 7 I found

it so much easier to express myself. I was much more open and

communicated better. I didnt stumble on signs like I still stumble on

words.

Chantelle

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I wish I used sign all the time. When I did for grade 6 and 7 I found

it so much easier to express myself. I was much more open and

communicated better. I didnt stumble on signs like I still stumble on

words.

Chantelle

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Deedee,

Yes, MacKenzie's been signed to since birth really, although I must admit

it's hard to teach someone something that you're only just learning

yourself. We sign to her in Exact Signed English, but she must have the

heart of a Deaf person because she consistently signs things in ASL, and

she's never been taught this. It seems that the sentence structure just

makes more sense to her.

It's frustrating though, as I said, she has more vocabulary than language.

It just seems it's time to expand her world to beyond just words.

Now I have to convince her " professionals " of this. I think it's probably

more a money issue that\n anything else.

Jeanie Colp

mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary 10

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

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Bonnie-

This has been a powerful message for me after meeting you and Patty

because I feel that she and Aubrie are very similar in their hearing,

vision, and language/communication. I am curious to see if we get

helpful insight in this area when we go to Perkins. It's been something

on my mind forever, but I don't have the knowledge to support the idea

to the school. Or even to justify the time and energy required for me

and the family to learn and use sign. This is an interesting and

perplexing issue for me.

Michele W

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I was just talking with Dylan's Intervener about this issue.

In some ways Dylan is fortunate in that he does not have any speech, people

know he needs sign. Our issue is getting folks to realize he needs tactual

sign. People often overestimate how well Dylan uses his vision and expect

because he can see them walking up to him, he must be able to see them sign

to him. They do not take into account that seeing does not have much to do

with processing and understanding what he saw.

In the same way Mackenzie may hear well enough to learn to form some words,

that does not mean she is getting all of the information needed to learn a

full language.

Also kids with mild hearing loss are in the unfortunate position of hearing

enough to get by, but not enough to really understand everything. These

kids can fall through the cracks in a school, because there " are others who

need it more " . This seems so backwards, because with just a little bit of

support, these kids could do so much.

Kim L

Re: cochlear implants/speech

Bonnie-

This has been a powerful message for me after meeting you and Patty

because I feel that she and Aubrie are very similar in their hearing,

vision, and language/communication. I am curious to see if we get

helpful insight in this area when we go to Perkins. It's been something

on my mind forever, but I don't have the knowledge to support the idea

to the school. Or even to justify the time and energy required for me

and the family to learn and use sign. This is an interesting and

perplexing issue for me.

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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I was just talking with Dylan's Intervener about this issue.

In some ways Dylan is fortunate in that he does not have any speech, people

know he needs sign. Our issue is getting folks to realize he needs tactual

sign. People often overestimate how well Dylan uses his vision and expect

because he can see them walking up to him, he must be able to see them sign

to him. They do not take into account that seeing does not have much to do

with processing and understanding what he saw.

In the same way Mackenzie may hear well enough to learn to form some words,

that does not mean she is getting all of the information needed to learn a

full language.

Also kids with mild hearing loss are in the unfortunate position of hearing

enough to get by, but not enough to really understand everything. These

kids can fall through the cracks in a school, because there " are others who

need it more " . This seems so backwards, because with just a little bit of

support, these kids could do so much.

Kim L

Re: cochlear implants/speech

Bonnie-

This has been a powerful message for me after meeting you and Patty

because I feel that she and Aubrie are very similar in their hearing,

vision, and language/communication. I am curious to see if we get

helpful insight in this area when we go to Perkins. It's been something

on my mind forever, but I don't have the knowledge to support the idea

to the school. Or even to justify the time and energy required for me

and the family to learn and use sign. This is an interesting and

perplexing issue for me.

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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Jeanie: I am so sorry to hear your dealing with this issue of lack of

support in the school. I thought she DID get INTERVENTION!!! My

advice would be DON'T start GRADE 1 without getting what you need.

Otherwise they could say in a few months, " look she is doing fine " ,

while really NOT understanding her true potential. Hope your lawyer

can get on this at once. Even if you can get someone you know for now

to be the " co-communicator " or " Intervenor " and send the Board the

bill. Send them to our workshop too in Toronto, and send them that

bill as well. OR ask if they would rather pay for an INTERVENOR to be

flown in from Ontario or B.C., or have someone fly in to work with the

support person now because MANY parents on this listserv have

reported: the cost of educating your child later on in order to catch

up will triple!! ( as an example) INTERVENTION in the school is

standard practice in other parts of Canada and this is HER RIGHT to be

able to communicate using standard practice for those who have

combined vision/hearing issues and require support, or for those who

are deafblind.

Ann Gloyn

Education Specialist

Canada

> Deedee,

>

> Yes, MacKenzie's been signed to since birth really, although I

must admit

> it's hard to teach someone something that you're only just learning

> yourself. We sign to her in Exact Signed English, but she must have the

> heart of a Deaf person because she consistently signs things in ASL, and

> she's never been taught this. It seems that the sentence structure just

> makes more sense to her.

>

> It's frustrating though, as I said, she has more vocabulary than

language.

> It just seems it's time to expand her world to beyond just words.

>

> Now I have to convince her " professionals " of this. I think it's

probably

> more a money issue that\n anything else.

>

> Jeanie Colp

> mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary 10

>

>

>

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

> ----

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Jeanie: I am so sorry to hear your dealing with this issue of lack of

support in the school. I thought she DID get INTERVENTION!!! My

advice would be DON'T start GRADE 1 without getting what you need.

Otherwise they could say in a few months, " look she is doing fine " ,

while really NOT understanding her true potential. Hope your lawyer

can get on this at once. Even if you can get someone you know for now

to be the " co-communicator " or " Intervenor " and send the Board the

bill. Send them to our workshop too in Toronto, and send them that

bill as well. OR ask if they would rather pay for an INTERVENOR to be

flown in from Ontario or B.C., or have someone fly in to work with the

support person now because MANY parents on this listserv have

reported: the cost of educating your child later on in order to catch

up will triple!! ( as an example) INTERVENTION in the school is

standard practice in other parts of Canada and this is HER RIGHT to be

able to communicate using standard practice for those who have

combined vision/hearing issues and require support, or for those who

are deafblind.

Ann Gloyn

Education Specialist

Canada

> Deedee,

>

> Yes, MacKenzie's been signed to since birth really, although I

must admit

> it's hard to teach someone something that you're only just learning

> yourself. We sign to her in Exact Signed English, but she must have the

> heart of a Deaf person because she consistently signs things in ASL, and

> she's never been taught this. It seems that the sentence structure just

> makes more sense to her.

>

> It's frustrating though, as I said, she has more vocabulary than

language.

> It just seems it's time to expand her world to beyond just words.

>

> Now I have to convince her " professionals " of this. I think it's

probably

> more a money issue that\n anything else.

>

> Jeanie Colp

> mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary 10

>

>

>

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

> ----

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Jeanie: I am so sorry to hear your dealing with this issue of lack of

support in the school. I thought she DID get INTERVENTION!!! My

advice would be DON'T start GRADE 1 without getting what you need.

Otherwise they could say in a few months, " look she is doing fine " ,

while really NOT understanding her true potential. Hope your lawyer

can get on this at once. Even if you can get someone you know for now

to be the " co-communicator " or " Intervenor " and send the Board the

bill. Send them to our workshop too in Toronto, and send them that

bill as well. OR ask if they would rather pay for an INTERVENOR to be

flown in from Ontario or B.C., or have someone fly in to work with the

support person now because MANY parents on this listserv have

reported: the cost of educating your child later on in order to catch

up will triple!! ( as an example) INTERVENTION in the school is

standard practice in other parts of Canada and this is HER RIGHT to be

able to communicate using standard practice for those who have

combined vision/hearing issues and require support, or for those who

are deafblind.

Ann Gloyn

Education Specialist

Canada

> Deedee,

>

> Yes, MacKenzie's been signed to since birth really, although I

must admit

> it's hard to teach someone something that you're only just learning

> yourself. We sign to her in Exact Signed English, but she must have the

> heart of a Deaf person because she consistently signs things in ASL, and

> she's never been taught this. It seems that the sentence structure just

> makes more sense to her.

>

> It's frustrating though, as I said, she has more vocabulary than

language.

> It just seems it's time to expand her world to beyond just words.

>

> Now I have to convince her " professionals " of this. I think it's

probably

> more a money issue that\n anything else.

>

> Jeanie Colp

> mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary 10

>

>

>

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

> ----

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Sharon here,

Unfortunately, there are still 'oralists' out there who insist that

sign will interfere with speech development when in fact research has

shown that signing can actually promote speech development, by

helping children to develop language and communication first, then

once they have this essential foundation, the speech can

follow...however, speech is not always an option, and certainly not

an easy option for many children, particularly those who have other

conditions effecting speech musculature such as facial palsy...in

additon, many children with CHARGE are tube fed for many years, with

little or no opportunity to use all those tongue and jaw muscles used

in eating/chewing/swallowing...the same muscles needed for speech.

So, signs can support the development of langugage and eventually

speech, if speech is physiologically possible for a particular

child...

Language and communication are the important things...develop those

first and anything is possible!

Hope this helps.

>Hi,

>

>I'm hoping someone may have some input regarding our speech/language

>issues. My daughter MacKenzie is 6 and has had a Cochlear Implant

>for 4 years. She hears very well (20 - 30 dB) in a closed setting.

>Her speech is very delayed though. This doesn't necessarily bother

>me, but we're having some issues with getting educational supports.

>

>Our Special Education Authority makes the recommendations to our

>school board for what our kids need. MacKenzie is starting grade 1

>and has a great vocabulary base but no real language. She is

>definately missing conversation and no doubt will begin to fall

>behind.

>

>A language support worker, that signs, is the logical next step to

>me. This would ready her for an interpreter maybe next year.

>

>The director of the Special Education Authority feels that we should

>wait to see what MacKenzie will do with her voice. She's made modest

>gains in sound development this year, but has no real recognizable

>speech.

>

>I think it's a true crime to hold her back on the basis that she MAY

>speak someday. He has the notion that more sign may inhibit her oral

>language.

>

>She also has uni-lateral laryngeal palsy and many oral motor issues!

>

>Any suggestions?

>

>Jeanie Colp

>mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary 10

>

>

>-------------------------------------------------------------------------------\

-

>

>

>

>

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Share on other sites

Sharon here,

Unfortunately, there are still 'oralists' out there who insist that

sign will interfere with speech development when in fact research has

shown that signing can actually promote speech development, by

helping children to develop language and communication first, then

once they have this essential foundation, the speech can

follow...however, speech is not always an option, and certainly not

an easy option for many children, particularly those who have other

conditions effecting speech musculature such as facial palsy...in

additon, many children with CHARGE are tube fed for many years, with

little or no opportunity to use all those tongue and jaw muscles used

in eating/chewing/swallowing...the same muscles needed for speech.

So, signs can support the development of langugage and eventually

speech, if speech is physiologically possible for a particular

child...

Language and communication are the important things...develop those

first and anything is possible!

Hope this helps.

>Hi,

>

>I'm hoping someone may have some input regarding our speech/language

>issues. My daughter MacKenzie is 6 and has had a Cochlear Implant

>for 4 years. She hears very well (20 - 30 dB) in a closed setting.

>Her speech is very delayed though. This doesn't necessarily bother

>me, but we're having some issues with getting educational supports.

>

>Our Special Education Authority makes the recommendations to our

>school board for what our kids need. MacKenzie is starting grade 1

>and has a great vocabulary base but no real language. She is

>definately missing conversation and no doubt will begin to fall

>behind.

>

>A language support worker, that signs, is the logical next step to

>me. This would ready her for an interpreter maybe next year.

>

>The director of the Special Education Authority feels that we should

>wait to see what MacKenzie will do with her voice. She's made modest

>gains in sound development this year, but has no real recognizable

>speech.

>

>I think it's a true crime to hold her back on the basis that she MAY

>speak someday. He has the notion that more sign may inhibit her oral

>language.

>

>She also has uni-lateral laryngeal palsy and many oral motor issues!

>

>Any suggestions?

>

>Jeanie Colp

>mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary 10

>

>

>-------------------------------------------------------------------------------\

-

>

>

>

>

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Share on other sites

Sharon here,

Unfortunately, there are still 'oralists' out there who insist that

sign will interfere with speech development when in fact research has

shown that signing can actually promote speech development, by

helping children to develop language and communication first, then

once they have this essential foundation, the speech can

follow...however, speech is not always an option, and certainly not

an easy option for many children, particularly those who have other

conditions effecting speech musculature such as facial palsy...in

additon, many children with CHARGE are tube fed for many years, with

little or no opportunity to use all those tongue and jaw muscles used

in eating/chewing/swallowing...the same muscles needed for speech.

So, signs can support the development of langugage and eventually

speech, if speech is physiologically possible for a particular

child...

Language and communication are the important things...develop those

first and anything is possible!

Hope this helps.

>Hi,

>

>I'm hoping someone may have some input regarding our speech/language

>issues. My daughter MacKenzie is 6 and has had a Cochlear Implant

>for 4 years. She hears very well (20 - 30 dB) in a closed setting.

>Her speech is very delayed though. This doesn't necessarily bother

>me, but we're having some issues with getting educational supports.

>

>Our Special Education Authority makes the recommendations to our

>school board for what our kids need. MacKenzie is starting grade 1

>and has a great vocabulary base but no real language. She is

>definately missing conversation and no doubt will begin to fall

>behind.

>

>A language support worker, that signs, is the logical next step to

>me. This would ready her for an interpreter maybe next year.

>

>The director of the Special Education Authority feels that we should

>wait to see what MacKenzie will do with her voice. She's made modest

>gains in sound development this year, but has no real recognizable

>speech.

>

>I think it's a true crime to hold her back on the basis that she MAY

>speak someday. He has the notion that more sign may inhibit her oral

>language.

>

>She also has uni-lateral laryngeal palsy and many oral motor issues!

>

>Any suggestions?

>

>Jeanie Colp

>mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary 10

>

>

>-------------------------------------------------------------------------------\

-

>

>

>

>

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Sharon,

Thanks for your input, I'll be sure to include it in my evidence file. I

can feel my blood pressure rising at the thought of this fight.

Jeanie Colp>

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Sharon,

Thanks for your input, I'll be sure to include it in my evidence file. I

can feel my blood pressure rising at the thought of this fight.

Jeanie Colp>

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

----

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Sharon,

Thanks for your input, I'll be sure to include it in my evidence file. I

can feel my blood pressure rising at the thought of this fight.

Jeanie Colp>

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

----

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Jeanie,

Ann is so right in what she is saying. is an example of not

getting services and costing a district tons of money later. I

wished I had known what I know now when she was in first grade and

maybe she wouldn't be the kid that costs too much now.

I did everything wrong early on. It made the fight very difficult

later when i knew better. If I can ever be of help, just let me

know. I might not know what to do...but I sure know what NOT to do.

Sheryl

Mom to Mitch 18 & 17 CHARGE

> > Deedee,

> >

> > Yes, MacKenzie's been signed to since birth really, although I

> must admit

> > it's hard to teach someone something that you're only just

learning

> > yourself. We sign to her in Exact Signed English, but she must

have the

> > heart of a Deaf person because she consistently signs things in

ASL, and

> > she's never been taught this. It seems that the sentence

structure just

> > makes more sense to her.

> >

> > It's frustrating though, as I said, she has more vocabulary than

> language.

> > It just seems it's time to expand her world to beyond just words.

> >

> > Now I have to convince her " professionals " of this. I think it's

> probably

> > more a money issue that\n anything else.

> >

> > Jeanie Colp

> > mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary 10

> >

> >

> >

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

--------

> > ----

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Jeanie,

Ann is so right in what she is saying. is an example of not

getting services and costing a district tons of money later. I

wished I had known what I know now when she was in first grade and

maybe she wouldn't be the kid that costs too much now.

I did everything wrong early on. It made the fight very difficult

later when i knew better. If I can ever be of help, just let me

know. I might not know what to do...but I sure know what NOT to do.

Sheryl

Mom to Mitch 18 & 17 CHARGE

> > Deedee,

> >

> > Yes, MacKenzie's been signed to since birth really, although I

> must admit

> > it's hard to teach someone something that you're only just

learning

> > yourself. We sign to her in Exact Signed English, but she must

have the

> > heart of a Deaf person because she consistently signs things in

ASL, and

> > she's never been taught this. It seems that the sentence

structure just

> > makes more sense to her.

> >

> > It's frustrating though, as I said, she has more vocabulary than

> language.

> > It just seems it's time to expand her world to beyond just words.

> >

> > Now I have to convince her " professionals " of this. I think it's

> probably

> > more a money issue that\n anything else.

> >

> > Jeanie Colp

> > mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary 10

> >

> >

> >

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

--------

> > ----

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Share on other sites

Jeanie,

Ann is so right in what she is saying. is an example of not

getting services and costing a district tons of money later. I

wished I had known what I know now when she was in first grade and

maybe she wouldn't be the kid that costs too much now.

I did everything wrong early on. It made the fight very difficult

later when i knew better. If I can ever be of help, just let me

know. I might not know what to do...but I sure know what NOT to do.

Sheryl

Mom to Mitch 18 & 17 CHARGE

> > Deedee,

> >

> > Yes, MacKenzie's been signed to since birth really, although I

> must admit

> > it's hard to teach someone something that you're only just

learning

> > yourself. We sign to her in Exact Signed English, but she must

have the

> > heart of a Deaf person because she consistently signs things in

ASL, and

> > she's never been taught this. It seems that the sentence

structure just

> > makes more sense to her.

> >

> > It's frustrating though, as I said, she has more vocabulary than

> language.

> > It just seems it's time to expand her world to beyond just words.

> >

> > Now I have to convince her " professionals " of this. I think it's

> probably

> > more a money issue that\n anything else.

> >

> > Jeanie Colp

> > mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary 10

> >

> >

> >

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

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> > ----

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