communication

[Guest guest]

Sharon,

Read the articles which Tim talked about that are now on the CHARGE

Foundation page in new articles. There is one on communication.

Bonnie

[Guest guest]

Sharon- our son , who is now 2.5, has made incredible strides in

communication using the combination of sign and spoken language. I

don't have any 'hard' evidence per se, but suffice to say he has

blown away his speech therapist and everyone else involved with his

care in the progress he has made. Shame on anyone who says signing

delays speech! As of age 2, was able to recite the alphabet and

sign it at the same time. We started with the basics when he was

about 6 months old, and the fact that he was able to communicate his

basic needs by 1-1.5 years old saved us so much frustration that

parents of hearing children go through in the interim developmet

phases!

I highly recommend signing & verbal communication, even to my

friends with hearing kids. I know gets a huge kick out of

learning both the sign and the spoken word, and it is also a great

help to have sign in a noisy environment.

mom to , 2.5 and wife to Bo

> Sharon here from West Oz,

> I've just searched the archives and don't seem to be able to

locate

> the great messages that were sent about 6 months ago regarding

using

> sign language with spoken language to support and supplement

> communication development. This approach seems to get the best

> results for many children with CHARGE, as the focus is on

> communication and not on a particular method. Unfortunately, the

old

> 'signing versus oral' argument is still alive and well down under,

> with some professionals advising parents not to use sign saying it

> will deter speech...of course these people have no experience with

> children with CHARGE or children who are deafblind, but that

doesn't

> stop them from giving advice!

>

> If anyone has advice regarding the value of combined signing and

> spoken language, I can pass it on to a family here, and it would

be

> greatly appreciated. Coming from other parents will be valuable

for

> this family. Many thanks. This list is the best!

[Guest guest]

Sharon,

Simulatneous communication has been used with Kennedy since she was very young.

(I learned as fast as I could) I basically sign and speak at the same time.

She speaks orally, understands both and can sign if she needs to (around her

deaf friends). She has lost about 60dB in the past 2 yrs taking her from a

mod-severe loss to a severe-profound loss, so I am thankful she has a great base

of sign language if she continues to lose. If she loses all of her hearing, we

will get a C.I for her, but in the interim, she will not be frustrated or unable

to communicate. She has a language facilitator in the classroom who does what I

do at home (sign & speak) and she is wonderful. In the gym, music, art, or

other noises places where the FM system is not, Kennedy has full access to the

information in both modes to which she is accustomed. When she is in the bath,

swimming, getting ready to go to bed, we can still communicate as I can just

sign to her if her hearing aid is off. Also, if

her hearing aid is broken (which is common at times), there is no interruption

in the flow of communication, it just changes gears from one mode to the other.

If she chooses at some point to drop the oral or the sign, that is fine with us

but I am VERY happy she has a good base of sign language in addition to the

oral. It was a wonderful tool for learning new words; she would not try to

" say " a new word if we simply voiced it, she would only try it most times if we

signed AND spoke. It was a combination that was and is very successful for

Kennedy (and us). If your mom (or anyone else) wants to call me regarding this,

I'm happy to speak to them. Just email me off list and I'll give you my number.

Final Thought: I say - whatever works to get the communication going, I really

didn't care if we had to come up with our own morse code and bang it out on the

table, just get it going!!!

Mom to Kennedy, 7 yrs with CHARGE, 15, 13 and wife to Graeme

New Brunswick, Canada

Visit our family on the web! http://ca.geocities.com/weirfamilyrogers

lisaweir@...

[Guest guest]

-

I am fascinated by such an effective communication system for Kennedy.

I'd love the same for Aubrie. This is one time I sort of wish her

hearing were a bit worse -- just enough so we could make a case for

needing sign when she is without her aide or FM. In her case, she can

hear " enough " so no one thinks sign is important. I know it would only

be helpful for her, but it would be such a chore for all of us involved

that it's not easily feasible. And there's really not a case for making

anyone do it. I mean, she'd even have to be trained to look when she's

not motivated to because she can hear (and she never thinks she's

missing anything!) It's complicated. Even the Perkins folks agreed

that it'd be nice, but very difficult and is certainly not something we

can force into the IEP. So we are considering a sign language club.

Truthfully, even the thought of trying to learn and use it at home is

daunting because my husband and son won't participate so it'll be just

me. Maybe that will be easier if there is a whole club behind it rather

than truly " just me " as it was when she was little. Ok-- I'm thinking

out loud and rambling now. Sorry!

Michele W

>

[Guest guest]

Michele,

It wasn't too bad learning as we went, since I started pretty much at about 6

months of age; however, Graeme did not learn as much, but now sees the benefit

(particularly since her hearing loss getting worse) and he is trying it MUCH

more and watching me and doing it a lot more. I have done a sign language club

at every school I've worked at and it's always over-packed! It's a good way to

start for sure...

[Guest guest]

I feel a bit better knowing that other dads lag behind in this as well.

I know it was hard for me and I was highly motivated so I can imagine

how impossible it would have seemed to DJ (and unnecessary since she

seemed to hear him fine). If we start a club, I may pick your brain

about that later.

Michele

Weir wrote:

>

>

>

> Michele,

>

> It wasn't too bad learning as we went, since I started pretty much at

> about 6 months of age; however, Graeme did not learn as much, but now

> sees the benefit (particularly since her hearing loss getting worse)

> and he is trying it MUCH more and watching me and doing it a lot

> more. I have done a sign language club at every school I've worked at

> and it's always over-packed! It's a good way to start for sure...

>

>

>

>

>

>

[Guest guest]

Michele,

I can't tell you how many times I heard that Patty didn't need sign because

she could hear good enough. I believed that too. In the beginning they might

have been right but because Patty's hearing has decreased through the years

they ended up being totally WRONG. I also think it was the Perkins staff who

said something similar to us about her sigining. They were right, it was

difficult, very difficult to find someone to teach it! And it is so expensive

to

hire a home teacher. Patty does hear, she used an FM, whatever. But I can't

tell you how important signing is to her now. She doesn't have an FM for

" life " . She just can't hear in a resturant, in a gym, at a party..... Never in a

million years did I realize how much information she was missing because of her

lack of hearing. This is even in a classroom. She is the queen at seeming

like she heard something when in reality she didn't. She's the great pretender!

And when she does hear she has to work so hard. Signing fills in the gaps.

My entire family took some sign classes for Patty. It was just a sign here

and a sign there. Patty ended up learning to sign at HKNC by total imersion.

Then when she came home the family just doesn't use it. It is almost like

they never took the class before. Some have even said they are insulted because

when we are signing with Patty they think we are talking about them when in

reality I am just interperting for her. How rude! That is how Patty feels

though when she can't follow the communication around her. a and I are

the

only ones who sign now. tries but for some reason isn't good at it. I

don't care, he tries and will evenutally get it when he has to.

Now that Patty signs she almost demands it when she can't hear. You should

see us at church! And when she has sign and speech she follows conversations

so much better and isn't so off topic.

If I had known then what I know now I would have used sign with Patty all the

time. I think it helps her intellectually too. No, I know it does. She is

getting the information in not only by hearing and seeing but by sensory input

as well.

Bonnie, mom to fluent signers Kris 22, Patty CHARGE 20 and wife to who

tries but just can't seem to get it!

[Guest guest]

,

it is very impotent to use sign. For me its very importent bacuase it helps

me with alot of things. I use it as much as possible and it helps fill in the

blanks. for me I thank god I know sign. if you have any questions feel free to

ask. Smile and hugs!

-Patty 20 Charge

[Guest guest]

chiming in )

is in 10th grade.

has the combined auditory and visual loss - and the combined input (FM

system on his hearing aides and a full time sign language translator) do not

add up to 200% input, it does not even add up to 100% input, and it takes

alot of effort to attend to two forms of input.

still doesn't really know when he is missing input. He tries his best

to take the clues from the signing, the auditory and the situation or

context and make his best conclusion. The only way he knows if he was off

is if he finds out he misunderstood or if the next thing he contributes to

the setting is way off mark. Either error is a lengthy discovery and

adjustment, and still not smooth or painless.

The positive spin I can put on this is this: the more aware he is of when

he misses means he is more intune appropriately in social conversation. The

more aware we are of his misses means we have raised our expectations for

him. The increase in frustration is not because something is going wrong or

deteriorating, but because it is going right, and building up, and we all

can see and smell the next plateau and are impatient to arrive there.

Am I making any sense? )

Good Morning!

Yuka

Re: communication

> . She misses stuff, but she doesn't know

> she's missing it. Even with Patty as an adult, how can you know that

> you're not hearing something??

[Guest guest]

postscript:

's audiogram shows severe loss, yet he functions very high with his

residual hearing as evidenced in his use of language and communication

( " hearing style preferences " ). Be that as it may, there was never a

question of providing him a total communication environment when he was

younger or providing him a sign language translator when he became

mainstreamed. It was deemed necessary to clarify communication, provide the

least restrictive environment, etc etc etc. Even the first few years

mainstreamed when the interpreters were concerned he didn't seem to be

paying attention to them, our case manager never allowed them to entertain

the idea for a moment that they weren't absolutely necessary. I could go on

and on with examples of other children who appeared to hear well enough and

appeared to not attend to the interpreters who in a few years were using

sign and relying on the clarification....

yuka

Re: communication

>

> Kim-

> Thank you, thank you, thank you. Just what I needed to hear. I know

> Aubrie is missing info. It's apparent in her questions and weird

> understandings of things. But I can't fill it all in for her unless

> someone is there 24/7-- interevenor-style. But she doesn't qualify for

> one because her hearing and vision are " good enough " . And it is good

> enough to function, but not good enough for optimal functioning. I

> can't imagine all the effort and mental gymnastics it takes for her

> brain to make sense of everything and to compensate, but she does it.

> As she gets older and can understand the efforts she is making and can

> appreciate the assistances we can provide, then things will make more

> sense for all of us. I know what I'd like for her ideally, and I'll

> keep working towards that, but I know it can't happen immediately. All

> of the conversations here keep me motivated, keep my eyes open, and keep

> me going. I appreciate how well you clued into the situation just from

> being my friend here on the list -- I know we've met once, but gee -- it

> was once and for a very short time!

>

> Anyway-- I will not give up on the sign. I will keep my mind open and

> watching for the best timing and method to get it done. In the

> meantime, I will not beat myself up for not doing it now or yesterday.

>

> Thanks-

> Michele W

>

> >

>

>

>

>

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

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca, or

email info@....

> 7th International

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

Information will be available at www.chargesyndrome.org or by calling

1-.

>

[Guest guest]

Michele,

I think the key to getting it, is having a response back from Aubrie.

If Aubrie took to signing like a fish to water (like Patty did) then you

would have the reinforcement you needed to go the extra mile to learn to

sign. Learning it just in case is too hard, like anything signing must be

used routinely to really learn it. I know a lot of words and I understand

ASL grammar after taking 4 semesters of classes, but Dylan did not respond

to it at the time, so I have forgotten so much. I know enough to sign to

him at his infant / toddler level of communication, but when he takes off

with sign, I can only hope I improve along with him.

The other thing that gets me whenever this conversation comes up is how I

have heard Deaf educators say that sometimes it is the child with only the

mild loss that is impacted the most in educational settings. For the

reasons that Bonnie said, they do well enough to make it seem like they are

getting all the info, but they are missing key pieces. (So if educators

know this, why do we insist they don't need interpreters? Money, of course

and difficulty filling the positions.)

Plus Aubrie has some vision loss. Kids with combined vision and hearing

loss often take in information that is distorted and incomplete, but they

don't know it. They think this is just how the world is and it makes it so

much harder to really put it all together. The fact that Aubrie does so

well is awesome, and you know she is compensating for these losses, but it

seems to me with even mild vision and hearing loss that she is still

missing information that others take for granted.

Then again we all know we cannot fight for everything our child needs at

once, they have too many needs. The time for each will come and they

continue to grow and learn along the way.

If Aubrie starts to lag behind her peers educationally, I would use that as

the cue that an interpreter is needed.

Kim L

>

> Michele,

>

> I can't tell you how many times I heard that Patty didn't need sign because

> she could hear good enough. I believed that too. In the beginning they might

> have been right but because Patty's hearing has decreased through the years

> they ended up being totally WRONG. I also think it was the Perkins staff who

> said something similar to us about her sigining. They were right, it was

> difficult, very difficult to find someone to teach it! And it is so expensive

> to

> hire a home teacher. Patty does hear, she used an FM, whatever. But I can't

> tell you how important signing is to her now. She doesn't have an FM for

> " life " . She just can't hear in a resturant, in a gym, at a party..... Never in

> a

> million years did I realize how much information she was missing because of

> her

> lack of hearing. This is even in a classroom. She is the queen at seeming

> like she heard something when in reality she didn't. She's the great

> pretender!

> And when she does hear she has to work so hard. Signing fills in the gaps.

>

> My entire family took some sign classes for Patty. It was just a sign here

> and a sign there. Patty ended up learning to sign at HKNC by total imersion.

> Then when she came home the family just doesn't use it. It is almost like

> they never took the class before. Some have even said they are insulted

> because

> when we are signing with Patty they think we are talking about them when in

> reality I am just interperting for her. How rude! That is how Patty feels

> though when she can't follow the communication around her. a and I are

> the

> only ones who sign now. tries but for some reason isn't good at it. I

> don't care, he tries and will evenutally get it when he has to.

>

> Now that Patty signs she almost demands it when she can't hear. You should

> see us at church! And when she has sign and speech she follows conversations

> so much better and isn't so off topic.

>

> If I had known then what I know now I would have used sign with Patty all the

> time. I think it helps her intellectually too. No, I know it does. She is

> getting the information in not only by hearing and seeing but by sensory input

> as well.

>

> Bonnie, mom to fluent signers Kris 22, Patty CHARGE 20 and wife to who

> tries but just can't seem to get it!

>

>

>

[Guest guest]

Kim,

You are brilliant.

pam

> ----------

> From: Kim Lauger

> Reply To: CHARGE

> Sent: Tuesday, February 8, 2005 9:19 AM

> To: CHARGE

> Subject: Re: communication

>

> Michele,

>

> I think the key to getting it, is having a response back from Aubrie.

> If Aubrie took to signing like a fish to water (like Patty did) then you

> would have the reinforcement you needed to go the extra mile to learn to

> sign. Learning it just in case is too hard, like anything signing must be

> used routinely to really learn it. I know a lot of words and I understand

> ASL grammar after taking 4 semesters of classes, but Dylan did not respond

> to it at the time, so I have forgotten so much. I know enough to sign to

> him at his infant / toddler level of communication, but when he takes off

> with sign, I can only hope I improve along with him.

>

> The other thing that gets me whenever this conversation comes up is how I

> have heard Deaf educators say that sometimes it is the child with only the

> mild loss that is impacted the most in educational settings. For the

> reasons that Bonnie said, they do well enough to make it seem like they are

> getting all the info, but they are missing key pieces. (So if educators

> know this, why do we insist they don't need interpreters? Money, of course

> and difficulty filling the positions.)

>

> Plus Aubrie has some vision loss. Kids with combined vision and hearing

> loss often take in information that is distorted and incomplete, but they

> don't know it. They think this is just how the world is and it makes it so

> much harder to really put it all together. The fact that Aubrie does so

> well is awesome, and you know she is compensating for these losses, but it

> seems to me with even mild vision and hearing loss that she is still

> missing information that others take for granted.

>

> Then again we all know we cannot fight for everything our child needs at

> once, they have too many needs. The time for each will come and they

> continue to grow and learn along the way.

>

> If Aubrie starts to lag behind her peers educationally, I would use that as

> the cue that an interpreter is needed.

>

> Kim L

>

>

>

>

> >

> > Michele,

> >

> > I can't tell you how many times I heard that Patty didn't need sign because

> > she could hear good enough. I believed that too. In the beginning they

might

> > have been right but because Patty's hearing has decreased through the years

> > they ended up being totally WRONG. I also think it was the Perkins staff

who

> > said something similar to us about her sigining. They were right, it was

> > difficult, very difficult to find someone to teach it! And it is so

expensive

> > to

> > hire a home teacher. Patty does hear, she used an FM, whatever. But I

can't

> > tell you how important signing is to her now. She doesn't have an FM for

> > " life " . She just can't hear in a resturant, in a gym, at a party..... Never

in

> > a

> > million years did I realize how much information she was missing because of

> > her

> > lack of hearing. This is even in a classroom. She is the queen at seeming

> > like she heard something when in reality she didn't. She's the great

> > pretender!

> > And when she does hear she has to work so hard. Signing fills in the gaps.

> >

> > My entire family took some sign classes for Patty. It was just a sign here

> > and a sign there. Patty ended up learning to sign at HKNC by total

imersion.

> > Then when she came home the family just doesn't use it. It is almost like

> > they never took the class before. Some have even said they are insulted

> > because

> > when we are signing with Patty they think we are talking about them when in

> > reality I am just interperting for her. How rude! That is how Patty feels

> > though when she can't follow the communication around her.> a and I

are

> > the

> > only ones who sign now. tries but for some reason isn't good at it. I

> > don't care, he tries and will evenutally get it when he has to.

> >

> > Now that Patty signs she almost demands it when she can't hear. You should

> > see us at church! And when she has sign and speech she follows

conversations

> > so much better and isn't so off topic.

> >

> > If I had known then what I know now I would have used sign with Patty all

the

> > time. I think it helps her intellectually too. No, I know it does. She is

> > getting the information in not only by hearing and seeing but by sensory

input

> > as well.

> >

> > Bonnie, mom to fluent signers Kris 22, Patty CHARGE 20 and wife to who

> > tries but just can't seem to get it!

> >

> >

> >

[Guest guest]

Bonnie-

I hear ya loud and clear. I just have to figure out what to do about

it. I need to talk with Aubrie and get her motivated too -- she can be

my little fire under my butt. She misses stuff, but she doesn't know

she's missing it. Even with Patty as an adult, how can you know that

you're not hearing something?? I mean, sometimes you would, but most of

the time not. Anyway, keep telling me until I get it in gear. It's

been on my mind since she was 2, but I just can't figure out how to do it.

Michele W

Turk22082@... wrote:

> Michele,

>

> I can't tell you how many times I heard that Patty didn't need sign

> because

> she could hear good enough. I believed that too. In the beginning

> they might

> have been right but because Patty's hearing has decreased through the

> years

> they ended up being totally WRONG. I also think it was the Perkins

> staff who

> said something similar to us about her sigining. They were right, it was

> difficult, very difficult to find someone to teach it! And it is so

> expensive to

> hire a home teacher. Patty does hear, she used an FM, whatever. But

> I can't

> tell you how important signing is to her now. She doesn't have an FM for

> " life " . She just can't hear in a resturant, in a gym, at a party.....

> Never in a

> million years did I realize how much information she was missing

> because of her

> lack of hearing. This is even in a classroom. She is the queen at

> seeming

> like she heard something when in reality she didn't. She's the great

> pretender!

> And when she does hear she has to work so hard. Signing fills in the

> gaps.

>

> My entire family took some sign classes for Patty. It was just a sign

> here

> and a sign there. Patty ended up learning to sign at HKNC by total

> imersion.

> Then when she came home the family just doesn't use it. It is almost

> like

> they never took the class before. Some have even said they are

> insulted because

> when we are signing with Patty they think we are talking about them

> when in

> reality I am just interperting for her. How rude! That is how Patty

> feels

> though when she can't follow the communication around her. a

> and I are the

> only ones who sign now. tries but for some reason isn't good at

> it. I

> don't care, he tries and will evenutally get it when he has to.

>

> Now that Patty signs she almost demands it when she can't hear. You

> should

> see us at church! And when she has sign and speech she follows

> conversations

> so much better and isn't so off topic.

>

> If I had known then what I know now I would have used sign with Patty

> all the

> time. I think it helps her intellectually too. No, I know it does.

> She is

> getting the information in not only by hearing and seeing but by

> sensory input

> as well.

>

> Bonnie, mom to fluent signers Kris 22, Patty CHARGE 20 and wife to

> who

> tries but just can't seem to get it!

>

>

>

[Guest guest]

Like we all are, insightful in some others and so dense in others, but it is

nice to be appreciated. Kim

>

> Kim,

> You are brilliant.

> pam

>

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

>> From: Kim Lauger

>> Reply To: CHARGE

>> Sent: Tuesday, February 8, 2005 9:19 AM

>> To: CHARGE

>> Subject: Re: communication

>>

>> Michele,

>>

>> I think the key to getting it, is having a response back from Aubrie.

>> If Aubrie took to signing like a fish to water (like Patty did) then you

>> would have the reinforcement you needed to go the extra mile to learn to

>> sign. Learning it just in case is too hard, like anything signing must be

>> used routinely to really learn it. I know a lot of words and I understand

>> ASL grammar after taking 4 semesters of classes, but Dylan did not respond

>> to it at the time, so I have forgotten so much. I know enough to sign to

>> him at his infant / toddler level of communication, but when he takes off

>> with sign, I can only hope I improve along with him.

>>

>> The other thing that gets me whenever this conversation comes up is how I

>> have heard Deaf educators say that sometimes it is the child with only the

>> mild loss that is impacted the most in educational settings. For the

>> reasons that Bonnie said, they do well enough to make it seem like they are

>> getting all the info, but they are missing key pieces. (So if educators

>> know this, why do we insist they don't need interpreters? Money, of course

>> and difficulty filling the positions.)

>>

>> Plus Aubrie has some vision loss. Kids with combined vision and hearing

>> loss often take in information that is distorted and incomplete, but they

>> don't know it. They think this is just how the world is and it makes it so

>> much harder to really put it all together. The fact that Aubrie does so

>> well is awesome, and you know she is compensating for these losses, but it

>> seems to me with even mild vision and hearing loss that she is still

>> missing information that others take for granted.

>>

>> Then again we all know we cannot fight for everything our child needs at

>> once, they have too many needs. The time for each will come and they

>> continue to grow and learn along the way.

>>

>> If Aubrie starts to lag behind her peers educationally, I would use that as

>> the cue that an interpreter is needed.

>>

>> Kim L

>>

>>

>>

>>

>>>

>>> Michele,

>>>

>>> I can't tell you how many times I heard that Patty didn't need sign because

>>> she could hear good enough. I believed that too. In the beginning they

>>> might

>>> have been right but because Patty's hearing has decreased through the years

>>> they ended up being totally WRONG. I also think it was the Perkins staff

>>> who

>>> said something similar to us about her sigining. They were right, it was

>>> difficult, very difficult to find someone to teach it! And it is so

>>> expensive

>>> to

>>> hire a home teacher. Patty does hear, she used an FM, whatever. But I

>>> can't

>>> tell you how important signing is to her now. She doesn't have an FM for

>>> " life " . She just can't hear in a resturant, in a gym, at a party..... Never

>>> in

>>> a

>>> million years did I realize how much information she was missing because of

>>> her

>>> lack of hearing. This is even in a classroom. She is the queen at seeming

>>> like she heard something when in reality she didn't. She's the great

>>> pretender!

>>> And when she does hear she has to work so hard. Signing fills in the gaps.

>>>

>>> My entire family took some sign classes for Patty. It was just a sign here

>>> and a sign there. Patty ended up learning to sign at HKNC by total

>>> imersion.

>>> Then when she came home the family just doesn't use it. It is almost like

>>> they never took the class before. Some have even said they are insulted

>>> because

>>> when we are signing with Patty they think we are talking about them when in

>>> reality I am just interperting for her. How rude! That is how Patty feels

>>> though when she can't follow the communication around her.> a and I

>>> are

>>> the

>>> only ones who sign now. tries but for some reason isn't good at it. I

>>> don't care, he tries and will evenutally get it when he has to.

>>>

>>> Now that Patty signs she almost demands it when she can't hear. You should

>>> see us at church! And when she has sign and speech she follows

>>> conversations

>>> so much better and isn't so off topic.

>>>

>>> If I had known then what I know now I would have used sign with Patty all

>>> the

>>> time. I think it helps her intellectually too. No, I know it does. She is

>>> getting the information in not only by hearing and seeing but by sensory

>>> input

>>> as well.

>>>

>>> Bonnie, mom to fluent signers Kris 22, Patty CHARGE 20 and wife to who

>>> tries but just can't seem to get it!

>>>

>>>

>>>

[Guest guest]

Kim-

Thank you, thank you, thank you. Just what I needed to hear. I know

Aubrie is missing info. It's apparent in her questions and weird

understandings of things. But I can't fill it all in for her unless

someone is there 24/7-- interevenor-style. But she doesn't qualify for

one because her hearing and vision are " good enough " . And it is good

enough to function, but not good enough for optimal functioning. I

can't imagine all the effort and mental gymnastics it takes for her

brain to make sense of everything and to compensate, but she does it.

As she gets older and can understand the efforts she is making and can

appreciate the assistances we can provide, then things will make more

sense for all of us. I know what I'd like for her ideally, and I'll

keep working towards that, but I know it can't happen immediately. All

of the conversations here keep me motivated, keep my eyes open, and keep

me going. I appreciate how well you clued into the situation just from

being my friend here on the list -- I know we've met once, but gee -- it

was once and for a very short time!

Anyway-- I will not give up on the sign. I will keep my mind open and

watching for the best timing and method to get it done. In the

meantime, I will not beat myself up for not doing it now or yesterday.

Thanks-

Michele W

>

[Guest guest]

Michele,

I know we have talked on list about IDEA and optimal functioning.

When you are ready to tackle the signing issue with the school, remember

that this is not about optimal functioning for Aubrie, it is about access to

information, information that the other kids have access to, but she does

not due to her vision and hearing loss, no matter how mild they might seem

to others.

Keep these e-mails, jot down instances of her weird responses, anything that

indicates she is missing info. It is not like it is some gift they are

going to give her so she can " be the best " , but simply an opportunity to

access what others take for granted. People without these losses or at

least living with it, cannot begin to imagine the amount of work our

children put into compensating.

Kim L

>

> Kim-

> Thank you, thank you, thank you. Just what I needed to hear. I know

> Aubrie is missing info. It's apparent in her questions and weird

> understandings of things. But I can't fill it all in for her unless

> someone is there 24/7-- interevenor-style. But she doesn't qualify for

> one because her hearing and vision are " good enough " . And it is good

> enough to function, but not good enough for optimal functioning. I

> can't imagine all the effort and mental gymnastics it takes for her

> brain to make sense of everything and to compensate, but she does it.

> As she gets older and can understand the efforts she is making and can

> appreciate the assistances we can provide, then things will make more

> sense for all of us. I know what I'd like for her ideally, and I'll

> keep working towards that, but I know it can't happen immediately. All

> of the conversations here keep me motivated, keep my eyes open, and keep

> me going. I appreciate how well you clued into the situation just from

> being my friend here on the list -- I know we've met once, but gee -- it

> was once and for a very short time!

>

> Anyway-- I will not give up on the sign. I will keep my mind open and

> watching for the best timing and method to get it done. In the

> meantime, I will not beat myself up for not doing it now or yesterday.

>

> Thanks-

> Michele W

>

>>

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 7th International

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

> Information will be available at www.chargesyndrome.org or by calling

> 1-.

>

[Guest guest]

Michele,

I am glad my words helped and I hope people who have asked questions about

how to " get parents to do something " notice. I am very sensitive to

recognizing how badly we all want to do EVERYTHING for our children, but

reality is we can't. We can only take on so much at once and we need to be

recognized for that, not judged for what we have not done. Information

about other options that we can look to in the future is helpful, as long as

it is not presented in a way that says we have let our kids down for not

having done it or mastered it or whatever long ago. We truly all do love

our kids and do our best.

Hugs to you. When I look at where Aubrie is at now, I know you have done an

awesome job.

Kim L

>

> Kim-

> Thank you, thank you, thank you. Just what I needed to hear. I know

> Aubrie is missing info. It's apparent in her questions and weird

> understandings of things. But I can't fill it all in for her unless

> someone is there 24/7-- interevenor-style. But she doesn't qualify for

> one because her hearing and vision are " good enough " . And it is good

> enough to function, but not good enough for optimal functioning. I

> can't imagine all the effort and mental gymnastics it takes for her

> brain to make sense of everything and to compensate, but she does it.

> As she gets older and can understand the efforts she is making and can

> appreciate the assistances we can provide, then things will make more

> sense for all of us. I know what I'd like for her ideally, and I'll

> keep working towards that, but I know it can't happen immediately. All

> of the conversations here keep me motivated, keep my eyes open, and keep

> me going. I appreciate how well you clued into the situation just from

> being my friend here on the list -- I know we've met once, but gee -- it

> was once and for a very short time!

>

> Anyway-- I will not give up on the sign. I will keep my mind open and

> watching for the best timing and method to get it done. In the

> meantime, I will not beat myself up for not doing it now or yesterday.

>

> Thanks-

> Michele W

>

>>

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 7th International

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

> Information will be available at www.chargesyndrome.org or by calling

> 1-.

>

[Guest guest]

Kim,

You are gifted!

Bonnie

[Guest guest]

Michele,

I can't tell you how important Patty's post is. I too thank God. You know,

she always seemed so " normal " and I just felt she missed so much. I was

treated like I was a dip when I asked for more assistance. We were told her

hearing was too good, her vision was too good, her health was too good, you know

the

routine. Bunch of junk if you ask me. No one understood until the staff at

Perkins put her together as a whole person.

Patty has disabilities. That isn't who she is, it is what she has to deal

with. She was born with them and they will never go away. Never. She shouldn't

have to " fit. " Patty spent so much time trying to act and be treated as

" normal " that she missed too much. It gets harder when they get older. And

when

the work load increases. Then there are attitudes. When she learned how to

sign even some family members were kind of embarrassed when we signed in public.

They got over it fast when they saw how it helps her and how people interact

with her as if she were Cool! Patty has learned so many ways to modify

things to make her life good. Signing is one of them. Plus, it didn't separate

her from the " normal " world. She luckily has speech for that. Now that she

signs instead of limiting her it actually widened her life. It also gives her

confidence in who she is. Weird, but true.

By the way, signing is only one important thing. Have you looked at

technology? I think that is even more important!

Bonnie, Mom to Kris 22, Patty CHARGE 20 and a whiz with the Internet, and

wife to

[Guest guest]

so here is my 2 cents! erika ahs a BAHA for 1 1/2 years now, we have nto

seen any improvmenet. before this she used hearing aids and a fm sytstem.

noth did nto work. why we were talked into this i dont know, i guess hoes it

would help. all ABR's never showed much hearing, and results with fm and

hearing aids showed no improvment. yet we went for this HORRIBLE surgery, one

of

the worst. we were not prepared for it not to work. anyway, we are now

looking at a Assitive tech computor for her. she uses a PECs at school, some

verba, cues,and basic signs. eriak cannot sign, its part a motor pplanning and

also i dont think she can understand it. this is the MOST FRUSTRATING for

us, we still cannot figure out the best means for communication. we have

considered the cochealr implant, but there are no guarantees here. i feel like

we

are running in circles. erika is 9 years. i feel so helpless with this.

we were so wrapped up in the early years with keeping her alive, that i feel

we missed the boat here. we pursued a cochealr implant when she was 1 yr but

htey refused to even consider.

cathie, mom to erika

[Guest guest]

Yes, but is her ear with near normal hearing always turned to where the

sound is coming from so she can access it? My husband has high frequency

loss in one ear only, but it is very clear that he is still missing a lot of

information and that is not even in the speech range, although he admits

that he cannot hear people talking unless he is looking at them, otherwise

it is just mumbles.

Just another thought to tuck away for when you and Aubrie are ready.

Kim

>

> Yuka-

> Interesting. The difference for Aubrie, I think, is that she has near

> normal hearing in one ear. If she had bilateral severe loss, then I

> don't think there would be opposition to signing. I'm saving all these

> posts for later reference as I continue to contemplate...

>

> Michele W

>

> Yuka Persico wrote:

>

>> postscript:

>>

>> 's audiogram shows severe loss, yet he functions very high with his

>> residual hearing as evidenced in his use of language and communication

>> ( " hearing style preferences " ). Be that as it may, there was never a

>> question of providing him a total communication environment

>

>

>

>

[Guest guest]

Argh--- you're right. Everyone is right. I am definitely going to see

what I can do about this while I'm on the bandwagon with all the other

recommendations from Perkins. Let the games begin...

Michele

Kim Lauger wrote:

> Yes, but is her ear with near normal hearing always turned to where the

> sound is coming from so she can access it? My husband has high frequency

> loss in one ear only, but it is very clear that he is still missing a

> lot of

> information and that is not even in the speech range, although he admits

> that he cannot hear people talking unless he is looking at them, otherwise

> it is just mumbles.

>

> Just another thought to tuck away for when you and Aubrie are ready.

>

> Kim

>

>

>

> >

> > Yuka-

> > Interesting. The difference for Aubrie, I think, is that she has near

> > normal hearing in one ear. If she had bilateral severe loss, then I

> > don't think there would be opposition to signing. I'm saving all these

> > posts for later reference as I continue to contemplate...

> >

> > Michele W

> >

> > Yuka Persico wrote:

> >

> >> postscript:

> >>

> >> 's audiogram shows severe loss, yet he functions very high

> with his

> >> residual hearing as evidenced in his use of language and communication

> >> ( " hearing style preferences " ). Be that as it may, there was never a

> >> question of providing him a total communication environment

> >

> >

> >

> >

[Guest guest]

I asked Aubrie just this afternoon if she'd like it if people signed and

talked to her. Oh, yes, she'd love it! Does she think sometimes she

doesn't hear everything -- yes. So it seems that she may be more aware

than I realized. She's always enjoyed sign. It's just that there's no

one to do it with so why would you.

Michele

Turk22082@... wrote:

> Michele,

>

> Patty misses stuff and doesn 't know it. But then again she also

> knows when

> she misses stuff. It can be confusing for us all. When she often has

> to say

> what, huh, could you repeat that then I know for sure she isn't

> hearing well.

> But she used to hide not hearing well in the classroom because people

> would

> she she wasn't paying attention, that she wasn't trying, or she hid it

> because

> none of the other kids continually asked the teacher for repetition.

> Patty

> advocates for her hearing by doing things such as telling the teacher

> where to

> stand so she can hear yet she still misses things even now. Then

> again when

> she is answering sure, yea, no,... I know she isn't really hearing. I

> ask her

> what was the question. Often she didn't hear and is trying not to

> seem, well,

> slow? So she'll hide it. How does she know when she doesn't

> understand to

> when she can't hear? It is learned.

>

> I have an idea on how to get Miss Aubrie to learn some signs. Why

> don't you

> and Aubrie learn a new sign each week so that when you get to the

> confrence

> she can sign with some of her friends, including us! Remind her Patty

> hears,

> talks and does everything everyone else does, signing just helps her get

> smarter. And my goodness, it helps her spelling tremendously!

>

> Bonnie

>

>

>

[Guest guest]

MIchele,

this whole strand has been so interesting. For everyone who has added their

thoughts: WOW.

I am wanting to put a bit more thought into this before I respond but....I would

say right now that if Aubrie were to begin learning sign language as an augment

to her speech I would want to see her learn Signed English. (Yes, I am aware

that there might be lightening bolts coming my way). Because she is dependent

on her speech for communication --expressive and receptive--I would not want to

see her confused by adding another language (ASL). If I am hearing all of this

right, and I believe this, the goal would be for her to sign and speak at the

same time (Simultaneous Communication/Total Communication) so she could express

herself in the most effective manner. And, because she is a person who depends

on her hearing, hearing English and seeing English can give her great back up in

two modes. As time goes on, and Aubrie learns signs and understands how to use

them, ASL would then come more naturally to her (in my opinion) and she can then

communicate with any deaf children who she befriends and she can then find a

place in the Deaf community (as well as the Hearing community) if that is what

she chooses.

Again, in my opinion, if she were to have an interpreter who was presenting

information in ASL in her classroom, for example, Aubrie would be listening to

her teacher in English, watching the interpreter in ASL and I think this would

be overwhelming for her.

I think that we (the Perkins folks who met Aubrie) would agree that signs would

be a great thing for Aubrie. But... you have to be ready. And everyone needs

to understand why you want this. Including Aubrie. Having her begin to get

sign input in her natural and comfortable environments--sign language club,

classes that are comfortable for her (if she is having trouble in Math, for

example, and another aspect is added like an interpreter, she might not be so

comfortable) so she is learning how to watch the interpreter, learn the signs,

etc. Just because there is an interpreter doesn't mean she will understand or

know what to be doing with one.

Is any of this making sense? I feel like I jumped in without really thinking.

So.. I will stop. I am sure I will have something more to say!!

Pam

ps. I am trying to decide if I want to send this to your private email, Michele,

or to the list!!

[Guest guest]

Thanks, Kim. I guess the hard part is figuring out what I think is

important for now and what my gut is telling me. I know what I would

love in an ideal world, but even that isn't realistic for me -- let

alone for the school and community. So -- what do I really think she

needs enough that I push for it? I'm not sure. I guess that's what's

held me back so far -- not knowing what exactly I feel strongly enough

about to fight for.

Michele W

Kim Lauger wrote:

> Michele,

>

> You are still the expert on Aubrie. You will have to figure out what you

> want to push for. Are you pushing for her to have time in her day to

> learn

> ASL? Are you asking for her to have a full time interpreter? How much is

> she missing now? Probably not enough to make a huge impact now.

> Recognizing that it will be harder to catch it all as she gets older gives

> reason to head in that direction now, but realizing you both don't have to

> be fluent tomorrow. A sign club can be a way for her to learn sign as

> well

> as her peers, or a sign time in her classroom. My kid's K and 1st grade

> teachers signed with all the kids. As her signing ability improves

> she will

> let you know how much she is needing it. I still go with trust your

> instincts and Aubrie's. The 2 of you do know what is right for you.

>

> Kim L

>

>

>

>

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

> *