Re: question for older CHARGErs

[Guest guest]

In a message dated 9/3/2004 6:59:43 AM Pacific Daylight Time,

momonamission@... writes:

> more hearing impaired or if her speech was worse, I would be

> able to get more support for sign

Michele,

I apologize if I gave ill advice or assumptions. I wasn't aware that

Aubrie's hearing and speech were near normal. I must have misread the email

because

I thought her speech was not understandable therefore my advice on alternative

language.

Please accept my apology,

Debra

[Guest guest]

Michele,

Even though my son is not yet an older CHARGER, I would like to tell you

what he does. He is 7. He has 2 malformed hands. He has 3 fingers on the

right, 4 on the left. He is the same as Aubrie in terms of cutting,

pasting, coloring, writing etc. 3 reconstructive surgeries later, he is

still able to do these things. Not well, but he CAN do them. Fine motor is

extremely hard for him, but his writing has improved dramatically. So has

his speech because expressive signs are hard for him. However, he still

signs. He also miraculously fingerspells (not to mention reads it at light

speed). One day he said to me he couldn't make an " 8 " . I told him to make

his usual " 7 " and mouth " 8 " , because many deaf people lip read as well.

That gave him more confidence.

Now he chooses to speak over sign, but will sign with his peers and me for

practice. To make an " R " he physically has to move his finger with his

other hand, but he does it.

has worked hard on getting people to understand him. When he was 3

his speech was INTELLIGIBLE, NO ONE could understand him. It frustrated

him. He also has a facial nerve palsy so speech does come out slower. So,

I think all his hard work paid off because now everyone understands him, and

everyday his speech improves. If people don't understand him, he will

repeat and slow down and maybe add signs depending on who he is talking to.

He is entering the 2nd grade level and at school we will be getting him a

voice activated writing tool (because his speech is clear enough now). We

will be picking it out this year. So, instead of putting all his energy

into writing, which is very hard and tiring for him, he will speak into the

computer and it will do the rest. It's important because he is at story

level writing now, but his hands and body can't keep up.

Debbie Matasker

[Guest guest]

Michele,

Even though my son is not yet an older CHARGER, I would like to tell you

what he does. He is 7. He has 2 malformed hands. He has 3 fingers on the

right, 4 on the left. He is the same as Aubrie in terms of cutting,

pasting, coloring, writing etc. 3 reconstructive surgeries later, he is

still able to do these things. Not well, but he CAN do them. Fine motor is

extremely hard for him, but his writing has improved dramatically. So has

his speech because expressive signs are hard for him. However, he still

signs. He also miraculously fingerspells (not to mention reads it at light

speed). One day he said to me he couldn't make an " 8 " . I told him to make

his usual " 7 " and mouth " 8 " , because many deaf people lip read as well.

That gave him more confidence.

Now he chooses to speak over sign, but will sign with his peers and me for

practice. To make an " R " he physically has to move his finger with his

other hand, but he does it.

has worked hard on getting people to understand him. When he was 3

his speech was INTELLIGIBLE, NO ONE could understand him. It frustrated

him. He also has a facial nerve palsy so speech does come out slower. So,

I think all his hard work paid off because now everyone understands him, and

everyday his speech improves. If people don't understand him, he will

repeat and slow down and maybe add signs depending on who he is talking to.

He is entering the 2nd grade level and at school we will be getting him a

voice activated writing tool (because his speech is clear enough now). We

will be picking it out this year. So, instead of putting all his energy

into writing, which is very hard and tiring for him, he will speak into the

computer and it will do the rest. It's important because he is at story

level writing now, but his hands and body can't keep up.

Debbie Matasker

[Guest guest]

> It's important because he is at story

> level writing now, but his hands and body can't keep up.

This is what I picture for Aubrie sometime this year. But I can't

imagine her speech being clear enough for a computer to understand. Hmmm...

Thanks for sharing 's info-

Michele W

[Guest guest]

Debra-

I think the complicating factor for Aubrie is that her hearing is " near

normal " when aided and she has pretty good speech, all things

considered, so she is very much an oral kid. Signing to her seems silly

cuz she doesn't have to look at it to understand. But-- she may learn

that looking at it while listening can increase her understanding. I'm

sure she's unaware of all that she is missing.

If she were more hearing impaired or if her speech was worse, I would be

able to get more support for sign. As it is, it's difficult to convince

myself of the necessity enough to take the time and effort to learn and

do it. In my heart, I know it would be helpful, but how to go about it

and how to get others on board and how to be sure it's worth all the

effort involved -- those are my problems.

Michele W

[Guest guest]

Michele,

Maybe she could benefit from something like an AlphaSmart w/Co-

Writer. It is a portable word processor that can be hooked up to a

computer for editing or printing of the text she enters. The Co-

Writer portion is a word prediction software that would help her if

she didn't know how to spell the whole word or just to cut down on

keystrokes for speed. The website is alphasmart.com if you want to

take a look at it.

Sheryl

Mom to Mitch 18 & 17 CHARGE

>

> > It's important because he is at story

> > level writing now, but his hands and body can't keep up.

>

> This is what I picture for Aubrie sometime this year. But I can't

> imagine her speech being clear enough for a computer to

understand. Hmmm...

>

> Thanks for sharing 's info-

> Michele W

[Guest guest]

Michele,

Maybe she could benefit from something like an AlphaSmart w/Co-

Writer. It is a portable word processor that can be hooked up to a

computer for editing or printing of the text she enters. The Co-

Writer portion is a word prediction software that would help her if

she didn't know how to spell the whole word or just to cut down on

keystrokes for speed. The website is alphasmart.com if you want to

take a look at it.

Sheryl

Mom to Mitch 18 & 17 CHARGE

>

> > It's important because he is at story

> > level writing now, but his hands and body can't keep up.

>

> This is what I picture for Aubrie sometime this year. But I can't

> imagine her speech being clear enough for a computer to

understand. Hmmm...

>

> Thanks for sharing 's info-

> Michele W

[Guest guest]

the computer is suppose to understand her from how she says the

words in a set up program. it wont understand you if its set for

her speech or her if you set it up. but if you have her do the

set up sentences it should understand her speech. you could maybe

find a computer place who sales the program see if they will let you

try to run set up if it works with her then get it and if it doesn't

just tell them its not going to work for you and dont get it.

also wesley used an elastic thing to help him hold his pencil

it had an elastic like hair band around his wrist its looped

to one that you sling the pencil in and a string part with a

bead to hold with other fingers . this thought him and helped him

to hold the pencil properly and his writing became better. also

helped to have him practice writing on some sand paper or a

rubber slip mat. that gives more feed back while they are writing .

that writing looks awful because its on bumps but the writing

after practicing that way looks lots better.

KayRena

Michele Westmaas wrote:

>

> > It's important because he is at story

> > level writing now, but his hands and body can't keep up.

>

> This is what I picture for Aubrie sometime this year. But I can't

> imagine her speech being clear enough for a computer to understand.

> Hmmm...

>

> Thanks for sharing 's info-

> 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!

>

>

>

>

[Guest guest]

the computer is suppose to understand her from how she says the

words in a set up program. it wont understand you if its set for

her speech or her if you set it up. but if you have her do the

set up sentences it should understand her speech. you could maybe

find a computer place who sales the program see if they will let you

try to run set up if it works with her then get it and if it doesn't

just tell them its not going to work for you and dont get it.

also wesley used an elastic thing to help him hold his pencil

it had an elastic like hair band around his wrist its looped

to one that you sling the pencil in and a string part with a

bead to hold with other fingers . this thought him and helped him

to hold the pencil properly and his writing became better. also

helped to have him practice writing on some sand paper or a

rubber slip mat. that gives more feed back while they are writing .

that writing looks awful because its on bumps but the writing

after practicing that way looks lots better.

KayRena

Michele Westmaas wrote:

>

> > It's important because he is at story

> > level writing now, but his hands and body can't keep up.

>

> This is what I picture for Aubrie sometime this year. But I can't

> imagine her speech being clear enough for a computer to understand.

> Hmmm...

>

> Thanks for sharing 's info-

> 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!

>

>

>

>

[Guest guest]

Oh do I have stories about Patty and her communication, her academic progress

that had to do with the continuing development of advanced language input and

output, things that were right and things that were so wrong. Total

communication approaches are out there. You can have a speech recognition

software

that will recognize her speech. That takes time though. Getting her on the

keyboard is vital, so is sign, so is continuing with speech therapy, and so is

everything else. One thing alone is not going to do it.

Most important though is:

SPEECH and LANGUAGE therapy by a professional who understands her and CHARGE.

COMPUTER/TECHNOLOGY

and

SIGN - even if it isn't perfect. By the way sign is also important for her

receptive skills.

Don't give up.

I hope to see you soon.

Bonnie

[Guest guest]

Oh do I have stories about Patty and her communication, her academic progress

that had to do with the continuing development of advanced language input and

output, things that were right and things that were so wrong. Total

communication approaches are out there. You can have a speech recognition

software

that will recognize her speech. That takes time though. Getting her on the

keyboard is vital, so is sign, so is continuing with speech therapy, and so is

everything else. One thing alone is not going to do it.

Most important though is:

SPEECH and LANGUAGE therapy by a professional who understands her and CHARGE.

COMPUTER/TECHNOLOGY

and

SIGN - even if it isn't perfect. By the way sign is also important for her

receptive skills.

Don't give up.

I hope to see you soon.

Bonnie

[Guest guest]

Let's see I think I'm the oldest (50_ adult CHARGEr on the list.

I couldn't color within the lines.

My handwriting was awful.

I know the entire alphabet and can send and receive with it in my hands,

since I can't see it.

So what does one thing have to do with the other anyway?

Kay

question for older CHARGErs

> I have a question for the parents of older CHARGErs and the adult

> CHARGErs on the list. Aubrie has limited fine motor ability. Her

> handwriting is poor, she can't color in the lines well, her cutting is

> poor, her hands have the same loose joints as the rest of her body.

> Professionals have used this as a reason to not use sign with her. They

> have said that she will not be able to sign properly so no one will

> understand her. Has anyone had fine motor issues interfere with using

> sign language in conversation with other signing peers?

>

> BTW-- My response to this has been that her speech is also

> unintelligible to others, but we don't stop teaching her to speak. So I

> guess that's another question. How many have developed speech that

> others (strangers like store clerks -- not just family and friends) can

> understand?

>

> I'm really puzzled as to how to develop an expressive mode of

> communication for Aubrie that equals her intellectual abilities.

>

> Michele W

> mom to Aubrie 6 yrs

>

>

>

>

> 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!

>

>

[Guest guest]

Let's see I think I'm the oldest (50_ adult CHARGEr on the list.

I couldn't color within the lines.

My handwriting was awful.

I know the entire alphabet and can send and receive with it in my hands,

since I can't see it.

So what does one thing have to do with the other anyway?

Kay

question for older CHARGErs

> I have a question for the parents of older CHARGErs and the adult

> CHARGErs on the list. Aubrie has limited fine motor ability. Her

> handwriting is poor, she can't color in the lines well, her cutting is

> poor, her hands have the same loose joints as the rest of her body.

> Professionals have used this as a reason to not use sign with her. They

> have said that she will not be able to sign properly so no one will

> understand her. Has anyone had fine motor issues interfere with using

> sign language in conversation with other signing peers?

>

> BTW-- My response to this has been that her speech is also

> unintelligible to others, but we don't stop teaching her to speak. So I

> guess that's another question. How many have developed speech that

> others (strangers like store clerks -- not just family and friends) can

> understand?

>

> I'm really puzzled as to how to develop an expressive mode of

> communication for Aubrie that equals her intellectual abilities.

>

> Michele W

> mom to Aubrie 6 yrs

>

>

>

>

> 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!

>

>

[Guest guest]

Let's see I think I'm the oldest (50_ adult CHARGEr on the list.

I couldn't color within the lines.

My handwriting was awful.

I know the entire alphabet and can send and receive with it in my hands,

since I can't see it.

So what does one thing have to do with the other anyway?

Kay

question for older CHARGErs

> I have a question for the parents of older CHARGErs and the adult

> CHARGErs on the list. Aubrie has limited fine motor ability. Her

> handwriting is poor, she can't color in the lines well, her cutting is

> poor, her hands have the same loose joints as the rest of her body.

> Professionals have used this as a reason to not use sign with her. They

> have said that she will not be able to sign properly so no one will

> understand her. Has anyone had fine motor issues interfere with using

> sign language in conversation with other signing peers?

>

> BTW-- My response to this has been that her speech is also

> unintelligible to others, but we don't stop teaching her to speak. So I

> guess that's another question. How many have developed speech that

> others (strangers like store clerks -- not just family and friends) can

> understand?

>

> I'm really puzzled as to how to develop an expressive mode of

> communication for Aubrie that equals her intellectual abilities.

>

> Michele W

> mom to Aubrie 6 yrs

>

>

>

>

> 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!

>

>

[Guest guest]

SSSHHHHH, I don't tell anybody this, so it is a secret. I couldn't be

understood at Aubrie's age.

Kay

question for older CHARGErs

>

>

> I have a question for the parents of older CHARGErs and the adult

> CHARGErs on the list. Aubrie has limited fine motor ability. Her

> handwriting is poor, she can't color in the lines well, her cutting is

> poor, her hands have the same loose joints as the rest of her body.

> Professionals have used this as a reason to not use sign with her. They

> have said that she will not be able to sign properly so no one will

> understand her. Has anyone had fine motor issues interfere with using

> sign language in conversation with other signing peers?

>

> BTW-- My response to this has been that her speech is also

> unintelligible to others, but we don't stop teaching her to speak. So I

> guess that's another question. How many have developed speech that

> others (strangers like store clerks -- not just family and friends) can

> understand?

>

> I'm really puzzled as to how to develop an expressive mode of

> communication for Aubrie that equals her intellectual abilities.

>

> Michele W

> mom to Aubrie 6 yrs

>

>

>

> 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!

>

>

>

>

[Guest guest]

SSSHHHHH, I don't tell anybody this, so it is a secret. I couldn't be

understood at Aubrie's age.

Kay

question for older CHARGErs

>

>

> I have a question for the parents of older CHARGErs and the adult

> CHARGErs on the list. Aubrie has limited fine motor ability. Her

> handwriting is poor, she can't color in the lines well, her cutting is

> poor, her hands have the same loose joints as the rest of her body.

> Professionals have used this as a reason to not use sign with her. They

> have said that she will not be able to sign properly so no one will

> understand her. Has anyone had fine motor issues interfere with using

> sign language in conversation with other signing peers?

>

> BTW-- My response to this has been that her speech is also

> unintelligible to others, but we don't stop teaching her to speak. So I

> guess that's another question. How many have developed speech that

> others (strangers like store clerks -- not just family and friends) can

> understand?

>

> I'm really puzzled as to how to develop an expressive mode of

> communication for Aubrie that equals her intellectual abilities.

>

> Michele W

> mom to Aubrie 6 yrs

>

>

>

> 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!

>

>

>

>

[Guest guest]

SSSHHHHH, I don't tell anybody this, so it is a secret. I couldn't be

understood at Aubrie's age.

Kay

question for older CHARGErs

>

>

> I have a question for the parents of older CHARGErs and the adult

> CHARGErs on the list. Aubrie has limited fine motor ability. Her

> handwriting is poor, she can't color in the lines well, her cutting is

> poor, her hands have the same loose joints as the rest of her body.

> Professionals have used this as a reason to not use sign with her. They

> have said that she will not be able to sign properly so no one will

> understand her. Has anyone had fine motor issues interfere with using

> sign language in conversation with other signing peers?

>

> BTW-- My response to this has been that her speech is also

> unintelligible to others, but we don't stop teaching her to speak. So I

> guess that's another question. How many have developed speech that

> others (strangers like store clerks -- not just family and friends) can

> understand?

>

> I'm really puzzled as to how to develop an expressive mode of

> communication for Aubrie that equals her intellectual abilities.

>

> Michele W

> mom to Aubrie 6 yrs

>

>

>

> 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!

>

>

>

>

[Guest guest]

Michele,

Hange in there. I just had another thought. I myself had speech therapy all

of first grade. I had forgotten all about it. I don't know why but I remember

practicing evey night with my Mom. That was 48 years ago. Too far back to

remember. Makes me wonder if there is any connection to 's uniqueness.

Lynn

Re: question for older CHARGErs

Ok- lots to think about. If Aubrie's speech improves enough for her to

use it for everything, then we just have the issue of the written school

work. I too am pro-technology. I am struggling to find a curriculum to

teach her the computer skills she needs. The school is working on

computer, but without a real plan for doing it. I have a kids' writing

program that reads your typing as or after you write it. I haven't

heard of Write Outloud, but I'll look into it.

Thanks for the encouragement of 's history.

Michele

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!

[Guest guest]

Michele,

Hange in there. I just had another thought. I myself had speech therapy all

of first grade. I had forgotten all about it. I don't know why but I remember

practicing evey night with my Mom. That was 48 years ago. Too far back to

remember. Makes me wonder if there is any connection to 's uniqueness.

Lynn

Re: question for older CHARGErs

Ok- lots to think about. If Aubrie's speech improves enough for her to

use it for everything, then we just have the issue of the written school

work. I too am pro-technology. I am struggling to find a curriculum to

teach her the computer skills she needs. The school is working on

computer, but without a real plan for doing it. I have a kids' writing

program that reads your typing as or after you write it. I haven't

heard of Write Outloud, but I'll look into it.

Thanks for the encouragement of 's history.

Michele

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!

[Guest guest]

Bonnie-

I really need time with you when we come to Boston. I have a feeling

that you may have some very valuable info if Aubrie is as much like

Patty as I think she is. It'll be good if we can spend some time

together when we come to Boston. I'll keep in touch as the time approaches.

Michele W

[Guest guest]

Kay-

I'll keep your secret! I am gaining confidence in the possibility of

Aubrie having intelligible speech at some point.

Michele W

[Guest guest]

Kay Lynd wrote:

> Let's see I think I'm the oldest (50_ adult CHARGEr on the list.

>

> I couldn't color within the lines.

> My handwriting was awful.

> I know the entire alphabet and can send and receive with it in my hands,

> since I can't see it.

>

> So what does one thing have to do with the other anyway?

>

>

Well, coloring in the lines, cutting on a line, and things like that are

fine motor skills that come before writing. They are used as milestones

to watch development in preschoolers. All of those fine motor skills

are related to developing legible handwriting.

Michele W

[Guest guest]

Sharon here, responding from the professional's point of view...

Communication in any form is the key...if we acknowledge a child's

communication efforts by imitating 'their sign' then modeling the

'correct sign', we are providing an important link to developing

those sign approximations. With practice and experience, the sign

approximations will become closer to the 'real thing'. In the

meantime, it is our responsibility to learn the child's method of

communication (including behaviour as communication) and educate as

many people as possible who have direct contact, in the child's

personalised communication system...

I realise the goal (in the question) is to enable Aubrie to

communicate with others in the general community...with encouragement

and confidence building, that probably will happen...in the meantime,

if everyone involved recognises her communication, then it can't help

but improve! This goes for speech as well as signs.

Here in WA we do 'Individual Communication Guides' - videos

demonstrating a child's personalised communication system. Copies of

this video are given to everyone who has direct contact with a

particular child. Yes, it's time consuming and we need to find

funding to do it, and to do it properly (editing, etc.) but the end

product is invaluable for children and their families.

>Oh, piddle. This is probably just a great day to get me even more mad

>than I already am, but forget about coordination issues with signing

>(perhaps I should add that I guess this could be a real concern if the

>problems are severe). often signs things " wrong, " but all of us end

>up getting her drift eventually. For some time now, she has signed

>Perkins' verions of signs as well as what she learned in Missouri and

>even taught me the sign for " broom " over this break. The signs often are

>far from perfect, but they nevertheless enable her (and the rest of us) to

>communicate just fine much of the time. When we had to use the oral

>approach, the child banged her head against bricks - literally. I just smiled

>to myself: always signs duck sideways even though she loves to go

>to the lake to feed them. Horse tends to be too far down. On and on. We

>still know what she means, and that's the ballgame right now! Martha

>Note: at the risk of being a real busy-body and obnoxious, our kids need to

>communicate as quickly as possible; if they screw up some, so what. My

>husband has college students who can't write a simple sentence. Our

>kids just vary a tad from that.

>

>

>

>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!

>

>

[Guest guest]

Sharon -

Sure sounds like WA is leaps ahead of Pike County IL!!! Thanks for the

wonderful video idea!

Michele W

Aubrie's mom

[Guest guest]

Sharon -

Sure sounds like WA is leaps ahead of Pike County IL!!! Thanks for the

wonderful video idea!

Michele W

Aubrie's mom