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Excellent thoughts, . And so valuable coming from you. Aubrie

does use a wireless FM now and is learning to speak up (which is mostly

a problem when she doesn't realized she's missed anything). But I don't

remember " meeting " you before. Have you introduced yourself along the

way and I missed it??

Michele W

Aubrie's mom

Nieder wrote:

> I would like to throw my two cents as a charge adult myself. I am

> totally deaf in my left ear, and wear a hearing aid in my right. For

> the most part it seems to be enough but from time to time I do miss

> out a bit. For kids with a similar situation, I think learning sign

> informally is a great thing! Its nice to have something to fall back

> on. As for classroom use, I think then you are dealing with getting

> someone in the classroom who can sign, and for child, that can really

> make them feel more self conscious then they already are. Not to

> mention all the red tape you are going to have to go through! That is

> a case where technology can come into play. A lot of FM systems and

> directional microphones are so small and discreet now days, most other

> students wouldn't know they are there! I do wish I had learned sign as

> a child and now that I am 26 there is nothing available for me to

> learn on a one on one basis. So yes, encourage it, but more so

> encourage your children to speak up and be assertive. " I am sorry, I

> didn't quite catch that " , " Would you repeat this please " . In the end

> the confidence will come in much more handy!! For older children, let

> them know its an option. Do not force it upon them. If they need it,

> they will do it when the timing is right for them.

>

> Nieder

>

>

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Sharon-

You know, we had the ear and palate surgery this spring, followed by

summer when we try to relax a bit, then hip surgery in Aug... we've just

gotten back to " normal " after the surgery and holidays. So I keep

reminding myself that we're not really behind, there just hasn't been

time for all these things. Isn't it amazing how fast a year can slip

by? But I don't see a way to prevent it. I mean, we had the Perkins

eval in there and some very effective (or so I thought at the time) IEP

meetings. Aubrie's having a wonderful 1st grade year -- it's just that

there's always more, more, more... I'm getting very cranky tonight

after thinking about this all day (on top of PMS). Argh. Good thing

the kids have gone to bed.

Michele W

Sharon Barrey Grassick wrote:

> Kim,

> Yes, it is challenging enough for parents to do what needs to be done

> on a daily basis, without professionals continually pushing their own

> wheelbarrows for what parents 'should' be doing!

> Parents are faced with difficult decisions everyday, and with

> children with CHARGE, often these decisions are of a medical nature

> which must take priority...how do you then try to take on board

> everything suggested (pushed!) by the speech therapist, the physio,

> the OT, audiologist, orthoptist, ENT, teacher, social worker,

> specialists, etc. etc. etc.

>

> Hey, we know you guys are good, but you'd have to be Houdini to do it

> all at once!

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Pam-

I agree completely on Signed Exact English! This is what we've used all

along. Actually, I believe what we've been doing is " Pidgen sign " ? --

using ASL signs in English word order. In any case, it must be signing

and speech simultaneously and in english word order. We don't sign

every little word like you would in SEE so I guess that's why ours is

Pidgen. Cued speech might also be good as far as coordinating sign and

speech, but it's not what's used on our deaf community. I think she'd

be better off with the way we are going. I think she'd adjust to ASL

when faced with it once she's fluent in whatever we do.

Keep us in your thoughts and let me know what you come up with. As we

all brainstorm, I gain great insight and better fuel for my fire.

Michele W

>

>

>

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

> *

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Ditto for us - sorry re: my last post - we use ASL signs in English Word Order.

Michele Westmaas wrote:

Pam-

I agree completely on Signed Exact English! This is what we've used all

along. Actually, I believe what we've been doing is " Pidgen sign " ? --

using ASL signs in English word order. In any case, it must be signing

and speech simultaneously and in english word order. We don't sign

every little word like you would in SEE so I guess that's why ours is

Pidgen. Cued speech might also be good as far as coordinating sign and

speech, but it's not what's used on our deaf community. I think she'd

be better off with the way we are going. I think she'd adjust to ASL

when faced with it once she's fluent in whatever we do.

Keep us in your thoughts and let me know what you come up with. As we

all brainstorm, I gain great insight and better fuel for my fire.

Michele W

>

>

>

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

> *

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Pam-

I forgot to say too that I think an interpreter would be a bad idea

right now. I don't know if it will ever be right for Aubrie. In the

classroom, the FM system helps quite a lot. If the teacher and aid knew

sign, they could sign key words for clarification, spelling words, etc.

Her teacher now, and other intuitive teachers, would know which words to

sign so that Aubrie understands them -- which words she has trouble

hearing clearly, etc. And on the playground, in PE, the lunchroom,

whereever and whenever the FM is not used or working, they'd have a

method that works. Mostly, her friends would have a way to clarify

things and to understand what she's trying to say. But, as I'm thinking

of this, I'm wondering who would feel a need to sign to her. I would

just because it's helpful to her. But will the teacher learn to sign

just so she can sign and speak simultaneously for Aubrie's benefit?

Will her friends really do both for her? Why would they if Aubrie seems

to understand them " enough " ? Oh, I'm so confused!

Michele W

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Ok-- now that I'm totally confused -- I am thinking that a sign club and

some informal learning makes sense now. As we learn more and see where

it fits and how it is helpful, then we can follow in those directions.

I don't have to see into the future! I don't have to know the outcome.

All I have to know is that informal learning would interest Aubrie (she

was crazy about learning some signs already tonight!) and would benefit

her in several ways. Having friends learn along with her will only help

us figure out what direction to take it in the future.

Now -- to technology... :-\

Michele W

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Pam,

Thanks. I tried to express that earlier, but ditched the e-mail, because it

didn't come out right. There is so much more to just having an interpreter,

The child has to understand the visual language, which likely they would be

learning the same time as the concept unless they were native signers, they

have to learn to listen to one; then if they realize they miss something the

interpreter has already passed that info too. If Aubrie and the interpreter

try to back up to cover that she has missed more info. She would need to

have some sign basis before an Interpreter would be helpful.

It just seems that right now Aubrie has enough to learn and to handle and

that learning a visual form of communicating will help her in the long run,

it just can't be done overnight, which is why I guessed you recommended the

sign club. It can be fun, additional to her lessons, not during her lessons

etc. at this point, and Michele does not have to feel that she has to do it

all now! And of course if it is a club, Aubrie's peers are learning too. I

It's not that I don't agree that sign will help fill in the gaps, it is just

how you get there, which I think is Michele's concern.

Michele, You live in a small town. Is there anyone in the entire town you

know of that signs? If so, do you think they would be interested in

volunteering to come in to Aubrie's class on a weekly basis to teach the

class a few words and to sign a story. It lets the school off the hook for

not having someone qualified, it lets you off the hook of having to do it

all yourself, and it helps all the kids learn the visual language. It seems

like something like that would be a good start.

Kim

>

> 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!!

>

>

>

>

>

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Cathie-

I have followed your story here on the list. I knew the BAHA hadn't

worked. What I guess I didn't realize is that it has left you with

still no good communication method. How very very frustrating. The

motor issues are a concern with us for signing too -- Aubrie can't look

at it and then do it like most kids. She needs lots of help to form the

signs. I hope that you come up with a good AT solution for her. Do you

live close enough to get some help from a Perkins eval??

Michele W

Aubrie's mom

>

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M,

Pidgin Signed English (actually it has a new name, but for the life of me, I

can't call it up!!) is what I am talking about and what we use at school.

I will DEFINITELY keep you in my thoughts :)

pam

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Kim:

We went 'round and 'round with our school district about this. We wanted

in the Indiana School for the Deaf because she had NO LANGUAGE. The

district said they'd give her an interpreter at the local school. I replied

that would have no idea what was being interpreted because at that

point she didn't know ASL either! She had to learn ASL before she could use

an interpreter. What good is an interpreter if you don't know the language

being used? They could have invented signs and would not have

known. Took us three conferences before the LEA would sign off (pardon the

pun) on attending ISD. We're so glad we continued to fight for that

placement: It has been the best decision for long-term educational goals.

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (15 yrs., ADD) and (12 yrs., CHARGE+)

Wife of Rick

oganm@...

oganr@...

Re: communication

There is so much more to just having an interpreter,

The child has to understand the visual language, which likely they would

be

learning the same time as the concept unless they were native signers,

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That's insane. Sometimes I really don't understand some of the

obstacles we face. I can accept obstacles that make sense (if there is

such a thing)-- but insanity drives me crazy!! :-P

BTW-- I used to fingerspell the signs too. Never got to the speed test

level tho!

Michele W

>

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> What good is an interpreter if you don't know the language

> being used?

Marilyn,

Excellent point.

Did you see the question earlier today I think on joint pain and possible

juvenile arthritis? I was hoping you would see it and respond.

Kim

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Michele,

I am sorry if you are feeling frustrated. Take a step back and relax.

Having Aubrie join a sign club is great, at least I think so. It's a beginning.

Don't expect to teach her how to sing proficiantly right now. Remember

everything is done with baby steps. Is signing something that should be your

major

focus right now? No, but it is incredibly important. I vote for technology

the be one of the biggest focuses for her specifically. But Michele, don't

expect her to be proficiant at that either. But she has to start somewhere.

You

have direction given to you. That is the most improtant. Think about it. As

she gets older, which happens before you know it, the work gets harder. Give

her the skills to increase her workload in a way that she is able to keep up

as much as she can with the other students. It becomes frustrating if there

are vision, hearing, sensory, health isues that get in the way of taking notes,

jotting down ideas, progressing as far as she can.

Look down the road and see that 20 years from now what will life be for

everyone? Technology! Plus, it will give her a more even palying ground and

help

close that gap that grows as they get older.

Michele, don't be overwhelemed. You can also take all our advice and then

apply it to your daughter how it will be right for her. Or decide our advice

doesn't apply to you. You know your baby. Each of our children are different

and it is the parents who know best. You are lucky now that you have

direction from the masters-Perkins. Take all our advice here as you want to,

but

follow the evals and recommendations from the professionals who know it all!

Most of all, listen to and follow Pam.

Then remember, baby steps!

Bonnie

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Hi Pam---what I hear is that the theory is with the CI you need to teach

the child to learn to listen, and since deaf kids are so visually in tune,

it will be so much easier just to go for the sign instead of to use

listening skills. In reality, and in my own opinion, with Rose, signing

hasn't really had a negative impact on her learing to listen. I think that

the use of the hand cue, and covering your mouth when speaking really helped

her. She doesn't usually need the hand cue to speak now, but when she won't

say something or use words I know she has to express herself I use the hand

cue. (the hand cue is just putting your hand over your mouth and saying

what you want the child to say, they learn to respond to this in therapy,

sometimes I put my hand over Rose's mouth, then she will speak). Ulitmately

though our children are our children and what the professionals say is a

recommendation really, so if signing and speech works then that is what

should be used, whatever works best for communication and to decrease

frustration!

Beckett---Rose (charge), Henry and Forrest's mom

& gt;From: & lt;pam.ryan@... & gt;

& gt;Reply-To: CHARGE

& gt;To: & lt;CHARGE & gt;

& gt;Subject: RE: communication

& gt;Date: Wed, 9 Feb 2005 08:19:59 -0500

& gt;

& gt;,

& gt;I sure sounds like you are doing such a great job!! I also like your one

thing at a time philosophy--sounds like it is working.

& gt;

& gt;I have a question about the CI and that people are telling you not to

sign with your daughter? Why are they saying that? I hve been reading that

a lot here and it harkens back to the original oral/sign debate. I would be

curious as to the explanation from your daughter's CI team.

& gt;

& gt;pam

& gt;

& gt;

& gt;

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