Re: Sign language

[Guest guest]

Michele,

I am intimidated to sign with Carmen because I just can't imagine

learning a new language myself (just like any 2nd language)--but I

know it will help her avoid becoming frustrated because she can't tell

me what she needs (due to her trach)--so let's do this together, shall

we? I will start the parent/baby sign class in mid-September. Treat

learning sign language like you and Aubrie are learning Italian

together (or should I say the Dutch language!?)--anyway, we can be

each others support. What do you say?

When I was at the conference in Miami, I felt so ignorant not knowing

sign language--I wanted to sign with people--it is such a beautiful

language, truly--I loved watching everyone interact in this way.

, mom to Zach 4 years and Carmen 14 months (CHARGE)

> Michele,

> Fully agree with Sally. Guess while I am obsessing about cochlear

implants,

> I can share what I have learnt along the way. In chatting with

parents and

> seeing some implanted children, I was encouraged to see that

substantial

> numbers of them are sign/speech bilingual. By signing, the children

have

> not been discouraged or prevented from speaking. They can switch

between

> the two depending on the situation. If a child is deaf or hard of

hearing,

> guess there are always the situations where they cannot use

whichever mode

> of amplification they normally wear (swimming, bed, ear infections,

broken

> equipment etc). This does leave them quite disadvantaged if they only

> communicate orally. Then there are all those things they miss

because their

> amplification is not picking everything up and they could use a

> visual/tactual support to communicate to their best ability.

>

> Michele, you know the more we think about things sometimes, the more

we can

> tie ourselves up in knots. At a risk of being primitive, how about

going

> for good old paper and pen and writing down the pros and cons of

each and

> examining not in terms of numbers necessarily but in terms of potential

> quality of life? How biased does that sound?

>

> Bet the kids at Aubrie's school would find it fun to learn to sign

too. I

> know a mum of a deaf child over here who transferred to a mainstream

school,

> she started a BSL group at the school (for the hearing kids mainly),

the

> kids got really excited and lots of them learnt to sign and next

thing the

> school was in the local newpaper when a whole load of hearing kids had

> passed their level one BSL exam. In the meantime, she had started a

BSL

> coffee morning for the parents. All of a sudden, signing was the

thing to

> do.

>

> Michele, I am not trivialising your dilemma (how can I after the

post I just

> sent re implants? - yikes, I want to retrieve it now!!!). Hope you

find an

> answer to your questions and the school support you in educating

your child

> appropriately in whichever manner you find is the most appropriate

for her.

>

> Flo

[Guest guest]

-

I hope that I will be on board with you! We'll see how this meeting

goes. I think our deaf-blind consultant will be helping me with the

argument. Aubrie and I signed when she was a baby. We had deaf

specialists coming in to our house from infancy. It took me a long time

to get motivated. The kid wouldn't look at me when I signed cuz she

could hear enough -- or so she thought. But soon we got on track. At

age 2, she had something like 75 expressive signs and only 10 verbal

words. By age 4, she was talking more and signing less. Now she

doesn't remember much sign at all. I still remember quite a bit when I

review. Really, it won't be that hard for us to learn -- it's just

getting the school on board and all using it.

I also feel so ignorant at the conferences and when I go to our school

for the deaf and I can't sign. I actually helped sign a bit with some

deaf kids who came for horseback riding with our therapy group this

summer. That was a good refresher -- and funny when the kids realized

how poorly I signed! Imagine how inept our girls will feel when they

can't communicate with their own CHARGE peers.

Have you found the on-line sign dictionaries? If you google it, there

are several. Some are better than others. It's nice if you can't find

something in your book or want to see a video rather than just the

drawing.

Keep it up with Carmen and I'll see what happens tomorrow. Thanks for

the support. It's always better to tackle a new challenge with a partner!

Oh-- let me tell you about when Aubrie was little. She might have been

2 or so. The deaf consultant taught me a favorite book in sign (The

Little Mouse, the Big Hungry Bear, and the Red Ripe Strawberry). I

read/signed it to Aubrie over and over. She loved it. She could sign

to me about what will come next, who is it, etc. Sign was how I knew

that she could understand the story, make connections, etc. Without it,

I'd have no clue. And she would not be developing concepts without the

language to communicate those connections. A book is a good place to

start sign because it gives you a whole conversation or topic.

Michele W

>

[Guest guest]

Sally-

Good point about no tactile cuing. As I talked it over with our

deafblind specialist, I think signing seemed best now. Cuing can help

us with vowel sounds for spelling words etc so we may use pieces of it.

But I think there is more support for sign in our community and more use

for it for Aubrie -- with her deaf peers here, her CHARGE peers, etc.

Plus it is handy to have one quick gesture for a whole word v. cuing

each phoneme. I loved cuing and think it's awesome. Ideally, I'd like

both -- but if I have to choose one right now, I'm guessing sign.

I am afraid to get started, but more than that I'm frustrated that

there's no one willing to do it but me. What good is that? And how

effective is that if I'm the only one?? Boy-- I am hearing myself and

thinking I need to just get with it and let the rest jump on board

eventually. But - wow - it's a big commitment to go it alone. I don't

even have the support of my spouse. I mean, I'll be the only signer in

the house. I'll try to gather my gusto and get with the program --

regardless of the outcome tomorrow. I'm cringing as I type that.

Michele W

>

[Guest guest]

Flo-

You did not trivialize -- not at all! I know in my heart it's the right

thing, but I can't seem to make an argument that will stick with the

school. This is where I'm stuck. I was stuck between cuing and sign --

but I think I just had a light bulb moment on that one and feel

comfortable with sign now. Of course, cuing will be on the back

burner. Never know when it will be helpful or needed. Ok -- that said,

I can tie myself up in knots thinking about it all more. I still have

to write up my report for tomorrow's meeting with all of the emails

attached and incorporated into my summary. Too much work!

Michele W

Florence Njeru wrote:

> Michele,

> Fully agree with Sally. Guess while I am obsessing about cochlear

> implants,

> I can share what I have learnt along the way. In chatting with

> parents and

> seeing some implanted children, I was encouraged to see that substantial

> numbers of them are sign/speech bilingual. By signing, the children have

> not been discouraged or prevented from speaking. They can switch between

> the two depending on the situation. If a child is deaf or hard of

> hearing,

> guess there are always the situations where they cannot use whichever

> mode

> of amplification they normally wear (swimming, bed, ear infections,

> broken

> equipment etc). This does leave them quite disadvantaged if they only

> communicate orally. Then there are all those things they miss because

> their

> amplification is not picking everything up and they could use a

> visual/tactual support to communicate to their best ability.

>

> Michele, you know the more we think about things sometimes, the more

> we can

> tie ourselves up in knots. At a risk of being primitive, how about going

> for good old paper and pen and writing down the pros and cons of each and

> examining not in terms of numbers necessarily but in terms of potential

> quality of life? How biased does that sound?

>

> Bet the kids at Aubrie's school would find it fun to learn to sign

> too. I

> know a mum of a deaf child over here who transferred to a mainstream

> school,

> she started a BSL group at the school (for the hearing kids mainly), the

> kids got really excited and lots of them learnt to sign and next thing

> the

> school was in the local newpaper when a whole load of hearing kids had

> passed their level one BSL exam. In the meantime, she had started a BSL

> coffee morning for the parents. All of a sudden, signing was the

> thing to

> do.

>

> Michele, I am not trivialising your dilemma (how can I after the post

> I just

> sent re implants? - yikes, I want to retrieve it now!!!). Hope you

> find an

> answer to your questions and the school support you in educating your

> child

> appropriately in whichever manner you find is the most appropriate for

> her.

>

> Flo

>

>

[Guest guest]

Michele,

Once the school sees Aubrie respond to signs and sees how she uses it to

fill in the gaps, they will be more likely to come on board (if they aren't

willing tomorrow). You don't have to be an expert to see that difference.

Start with words, don't worry about the grammar.

Since Aubrie is such an actress, find a book or video where the child is

Deaf, then have Aubrie playact that character where she would want to learn

sign like the character or. The child in the story learns a secret

language. Then you and she can have times where you communicate with sign,

and make it part of the game.

Truly if you have feedback from Aubrie, your excitement and motivation will

increase. Right now I think it is just time to start and see how she does.

Kim

> Sally-

> Good point about no tactile cuing. As I talked it over with our

> deafblind specialist, I think signing seemed best now. Cuing can help

> us with vowel sounds for spelling words etc so we may use pieces of it.

> But I think there is more support for sign in our community and more use

> for it for Aubrie -- with her deaf peers here, her CHARGE peers, etc.

> Plus it is handy to have one quick gesture for a whole word v. cuing

> each phoneme. I loved cuing and think it's awesome. Ideally, I'd like

> both -- but if I have to choose one right now, I'm guessing sign.

>

> I am afraid to get started, but more than that I'm frustrated that

> there's no one willing to do it but me. What good is that? And how

> effective is that if I'm the only one?? Boy-- I am hearing myself and

> thinking I need to just get with it and let the rest jump on board

> eventually. But - wow - it's a big commitment to go it alone. I don't

> even have the support of my spouse. I mean, I'll be the only signer in

> the house. I'll try to gather my gusto and get with the program --

> regardless of the outcome tomorrow. I'm cringing as I type that.

>

> 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@....

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Michele,

Good luck with the meeting today. About the sign thing, that's just a piece.

But another thought is after you figure out the why and make it known to the

school staff you have to go with the when and how. If Aburie is going to

learn sign, which I think will help her later on (like in her teens), you might

want to talk to them about when and how. Didn't you say they wanted to have a

club after school? Something like that would be great because who will be

signing with Aubrie once she learns? She is within the regular ed setting.

I worked in a class with some students used sign-not deaf students! We had

other classes come in once a week and all the children learned the alphabet, a

few signs, and also learned signs to songs. Around March or April the

children performed the songs to the rest of the school. It was great because

the

teacher was fluent in ASL and could switch to ESL. We also made it a game in

which when we would see the other children at lunch, recess etc, and would sign

and not use our voices. By the end of the year there were about 50 kids who

knew tons of words in sign and thought it was so cool. They then would talk to

our students-not the adults with them! It was great. After a year the

teacher had other teachers begging to join in.

I also worked in a class where there was a student who was deaf that would

lead the class in teaching them new words. It was kind of like a share, but

better. The funny thing is the teacher couldn't turn from the class even for a

moment because the students would communicate in finger spelling. Like taking

in class, but better!

Michele I know you understand Aubrie is going to need to fill in the blanks

like Patty had to. But she also needs to be able to communicate with others.

She's got the oral language so that's fine. If she learns singn her peers

need to as well. Which means, don't just make it for her. Now that Patty signs

she has gone back to Clinton a few times. When she would sign and talk the

other kids (adults now I guess) said they didn't know she was missing things.

They thought the FM made it " normal " for her. It didn't make her stand out

more, it made her join in more. They loved it and wanted to learn it too.

She also used her cane back there too. The kids didn't even know she was

" blind " or even visually impaired. They thought sign and the cane were cool.

Maybe if she had it back in school she wouldn't have seemed so -- slow? Maybe

her peers would have understood. Believe it or not there were teachers that

she had who said they didn't know the extent of things she missed by her senses.

They were surprised.

That one makes me a bit frustrated. It's one of these, I told you so.

Good luck with the meeting. Remember though that sign is just a small piece

of her education so don't get stuck on that alone. Ask for what you know

Aubrie needs, wait for the answer and then develop the how and where. Or have

them do that on their own. If they deny you get it in writing that you asked

and

were denied, and then move on to the next topic. There are too many things

to talk about. Talk about CHARGE and how Aubrie meets the characteristics, I

have a list, and then reading, writing, deaf/blind services, social

opportunities, classroom physical settings, OT, PT, APE, Speech Language,

Technology,

specific modifications...... are important.

-Individualised Education-

Bonnie, mom to a 22, Patty CHARGE 20, and wife to

[Guest guest]

kim we all understand each other lol xxxxxoooo love ellen

>

> Yuka, how awesome! 's journey certainly is motivating for me to

> get going with Carmen as quickly as possible.

>

>

> > >

> > > > Martha,

> > > > We use ASL signs in English Word Order, because Kennedy is oral

> > > > (expressively) and also for the reading aspect. Many deaf teens and

> > > > older folks I've talked to said it's easy for them to switch to ASL

> > > > when they get around other deaf people. We sign & speak

> > > > simultaneously most of the time with Kennedy. It's been MOST

> helpful.

> > > >

>

>

>

>

>

> 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@....

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling

> 1-.

>

[Guest guest]

Kim-

Thanks for the encouragement and gentle nudge to " just do it " .

Michele W

Kim Lauger wrote:

> Michele,

>

> Once the school sees Aubrie respond to signs and sees how she uses it to

> fill in the gaps, they will be more likely to come on board (if they

> aren't

> willing tomorrow). You don't have to be an expert to see that difference.

> Start with words, don't worry about the grammar.

>

> Since Aubrie is such an actress, find a book or video where the child is

> Deaf, then have Aubrie playact that character where she would want to

> learn

> sign like the character or. The child in the story learns a secret

> language. Then you and she can have times where you communicate with

> sign,

> and make it part of the game.

>

> Truly if you have feedback from Aubrie, your excitement and motivation

> will

> increase. Right now I think it is just time to start and see how she

> does.

>

> Kim

>

>

>

> > Sally-

> > Good point about no tactile cuing. As I talked it over with our

> > deafblind specialist, I think signing seemed best now. Cuing can help

> > us with vowel sounds for spelling words etc so we may use pieces of it.

> > But I think there is more support for sign in our community and more use

> > for it for Aubrie -- with her deaf peers here, her CHARGE peers, etc.

> > Plus it is handy to have one quick gesture for a whole word v. cuing

> > each phoneme. I loved cuing and think it's awesome. Ideally, I'd like

> > both -- but if I have to choose one right now, I'm guessing sign.

> >

> > I am afraid to get started, but more than that I'm frustrated that

> > there's no one willing to do it but me. What good is that? And how

> > effective is that if I'm the only one?? Boy-- I am hearing myself and

> > thinking I need to just get with it and let the rest jump on board

> > eventually. But - wow - it's a big commitment to go it alone. I don't

> > even have the support of my spouse. I mean, I'll be the only signer in

> > the house. I'll try to gather my gusto and get with the program --

> > regardless of the outcome tomorrow. I'm cringing as I type that.

> >

> > 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@....

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

Thanks! I am almost prepared -- have a few more hours to tweak and

print my report while Aubrie is at a library activity day. The

deafblind specialist was able to come. I have a few phone calls too to

see if I can garner more support.

I'll be in touch...

Michele

Turk22082@... wrote:

> Michele,

>

> Good luck with the meeting today. About the sign thing, that's just a

> piece.

> But another thought is after you figure out the why and make it known

> to the

> school staff you have to go with the when and how. If Aburie is going to

> learn sign, which I think will help her later on (like in her teens),

> you might

> want to talk to them about when and how. Didn't you say they wanted

> to have a

> club after school? Something like that would be great because who

> will be

> signing with Aubrie once she learns? She is within the regular ed

> setting.

>

> I worked in a class with some students used sign-not deaf students!

> We had

> other classes come in once a week and all the children learned the

> alphabet, a

> few signs, and also learned signs to songs. Around March or April the

> children performed the songs to the rest of the school. It was great

> because the

> teacher was fluent in ASL and could switch to ESL. We also made it a

> game in

> which when we would see the other children at lunch, recess etc, and

> would sign

> and not use our voices. By the end of the year there were about 50

> kids who

> knew tons of words in sign and thought it was so cool. They then

> would talk to

> our students-not the adults with them! It was great. After a year the

> teacher had other teachers begging to join in.

>

> I also worked in a class where there was a student who was deaf that

> would

> lead the class in teaching them new words. It was kind of like a

> share, but

> better. The funny thing is the teacher couldn't turn from the class

> even for a

> moment because the students would communicate in finger spelling.

> Like taking

> in class, but better!

>

> Michele I know you understand Aubrie is going to need to fill in the

> blanks

> like Patty had to. But she also needs to be able to communicate with

> others.

> She's got the oral language so that's fine. If she learns singn her

> peers

> need to as well. Which means, don't just make it for her. Now that

> Patty signs

> she has gone back to Clinton a few times. When she would sign and

> talk the

> other kids (adults now I guess) said they didn't know she was missing

> things.

> They thought the FM made it " normal " for her. It didn't make her

> stand out

> more, it made her join in more. They loved it and wanted to learn it too.

>

> She also used her cane back there too. The kids didn't even know she was

> " blind " or even visually impaired. They thought sign and the cane

> were cool.

> Maybe if she had it back in school she wouldn't have seemed so --

> slow? Maybe

> her peers would have understood. Believe it or not there were

> teachers that

> she had who said they didn't know the extent of things she missed by

> her senses.

> They were surprised.

>

> That one makes me a bit frustrated. It's one of these, I told you so.

>

> Good luck with the meeting. Remember though that sign is just a small

> piece

> of her education so don't get stuck on that alone. Ask for what you know

> Aubrie needs, wait for the answer and then develop the how and where.

> Or have

> them do that on their own. If they deny you get it in writing that

> you asked and

> were denied, and then move on to the next topic. There are too many

> things

> to talk about. Talk about CHARGE and how Aubrie meets the

> characteristics, I

> have a list, and then reading, writing, deaf/blind services, social

> opportunities, classroom physical settings, OT, PT, APE, Speech

> Language, Technology,

> specific modifications...... are important.

>

> -Individualised Education-

>

> Bonnie, mom to a 22, Patty CHARGE 20, and wife to

>

>

>

[Guest guest]

> I don't even have the support of my spouse.  I mean, I'll be the only

> signer in

> the house.

>

:

Take some comfort in the knowledge that you're not the only one. I feel like

I'm fighting the communication battle alone at home... and Eddie doesn't

speak! You'd think my husband would catch on and try something. Oh well. I'll

just

keep trying.

Joanne

mom to Eddie, 5 1/2+ and

, 9 1/2+, who thinks she knows sign language, but doesn't really.

[Guest guest]

Debbie,

Where did you do the sign language courses for your interpreter certificate?

Murray

[Guest guest]

I think the boys teacher is involved in a program at Ocean County College.

I will have to ask her too. I really want to get back into signing

especially because the boys are still not doing well verbally.

[Guest guest]

You know, even though and Andy joined me for our university

sign classes, I think Andy was resistant for a long time. As i've said

before here, without being aware of it, we were caught in the oral only vs.

total communication debate. Besides, ALL of the specialists said that

would speak. And she did as long as she had a prosthetic device to

permit " closure " for speech. Perkins was the only place that hit us hard

early (age 5 or so) to go for total communication.

Andy came around eventually. As a matter of fact, he readily enters into

full conversations with 's new totally deaf staff. His ease at doing so

amazes me, and he and I have so darn much to learn...But he just jumps

right in there. If you'd told me this would happen when was 5, I

would have laughed.

I think families can grow beyond initial reactions. That certainly holds for

us. Think of all the hurdles not only our CHARGErs face but also we the

parents as we deal with things for and with them.

Another soap box.

Martha

[Guest guest]

All this talk on signing. I was the only signer in my house for a while. I

am almost done with my interpreting certificate, which I started so I could

become proficient to always be able to talk to my son. I became such an

advocate of sign language me and another mom of a son with CHARGE started

our own signing business which has taken off unbelievably. Now, I have the

support from my family and they see the need. Don't give up on signing. It

is the way to go with our CHARGERS. I truly believe because I literally

started signing when my son was is why his communication is so good now at

8. He goes to a school for the deaf/hard of hearing and sign language is

used throughout his day. Although he doesn't expressively sign (he speaks),

he needs it receptively because he still has a severe to profound loss but

gets benefit with his BAHA.

All of you out there not sure if you should sign, take the time and learn

it, and do it, and do it all the time. You will be amazed at what your kids

will pick up and believe me they will start using it, even if it is 1 or 2

signs at first.

Now, my whole family signs, even my parents are trying to learn more.

BTW, our business happened totally by accident. We developed a class for

disabled kids which flourished into going to regular preschools to do it to

spread awareness and the usefulness of it with typical hearing children!

The reason was because we used sign language with our own typical kids and

my younger daughter started signing back at 7 months old and talked at 12

months. , my CHARGER started signing at around 8 months old one

word signs. By 12 months he was signing in 2 and 3 word combinations. He

didn't actually speak intelligibly until age 5. His spelling is excellent

and he reads fingerspelling at light speed. Faster than me! My older 10

year old uses it in school whenever they have to " act " out things, she uses

her ASL to do it!

Please, please, please learn sign language! It's an effort, but it is sure

worth it.

Debbie Matasker mom to 8/w CHARGE, andra 6, 10

[Norton AntiSpam] Re: Sign language

> I don't even have the support of my spouse. I mean, I'll be the only

> signer in

> the house.

>

:

Take some comfort in the knowledge that you're not the only one. I feel like

I'm fighting the communication battle alone at home... and Eddie doesn't

speak! You'd think my husband would catch on and try something. Oh well.

I'll just

keep trying.

Joanne

mom to Eddie, 5 1/2+ and

, 9 1/2+, who thinks she knows sign language, but doesn't really.

[Guest guest]

I wish that I had said this as strongly and clearly. Over and over,

communication, if not the only thing that matters, it's darn close. Martha

[Guest guest]

Joanne-

You know, that really does help me to know. Thank you-

Michele W

Joannelent@... wrote:

>

> > I don't even have the support of my spouse. I mean, I'll be the only

> > signer in

> > the house.

> >

>

> :

>

> Take some comfort in the knowledge that you're not the only one. I

> feel like

> I'm fighting the communication battle alone at home... and Eddie doesn't

> speak! You'd think my husband would catch on and try something. Oh

> well. I'll just

> keep trying.

>

> Joanne

> mom to Eddie, 5 1/2+ and

> , 9 1/2+, who thinks she knows sign language, but doesn't really.

>

[Guest guest]

I must have missed something-what book are you all talking about?

On another note, has anyone started signing at a later age with their kids?

Jay and I sign (not nearly enough but we are working on it) to the boys

because they have very limited verbal skills and I was just wondering is there

a

point that you miss the boat on signing. I will never give up because I feel

that the boys are starting to understand, but sometimes I am concerned that

we will not have any communication tools, especially for .

signs more than Jay and I and uses PECS and an Augmentative, but Matt has not

really picked up on any one area thus far. We keep plugging away but just

curious as too being to late on certain things.

Thanks,

Murray

mom to twin Chargers and and wife to Jay

[Guest guest]

,

I go to Union County College in Plainfield. Camden County College is the

only other school in the state that has a program.

Debbie

Re: Sign language

Debbie,

Where did you do the sign language courses for your interpreter

certificate?

Murray

[Guest guest]

the bit at the beginning of this really got my attention -- i had this

problem with Ethan (i suspect his current teacher still does tho i have not

asked her recently) if his hearing aide was on everyone assumed it was " all

better " and he could hear the same as we could... i had the devils own time

getting his accommodations met by anyone other than myself or his mother --

i even had another teacher reprimand *me* that i was babying him because i

repeatedly replaced his 'paintbrush' (cotton ball) in his hand or on his

paper when he dropped it on the carpet *she* thought he should be given

'time out' for it or not be allowed to paint... needless to say i let

*her*know who his teacher was and informed her that if she didn't know

my class

she didn't need to be instructing me on how to 'discipline' them.

grrrr

sorry... soapbox subject again

Cole

>

> Michele,

> Hearing aids or not, Aubrie is hearing impaired. Even with the aids,

> she does not hear as we do. This was told to me by our AEA hearing

> consultant and is one of those things that have stuck in my head.

> Sometimes we have to remind her teachers, but her interpreter does a

> good job of that! Sometimes they think that the hearing aids make

> everything better, but we all know how hearing can fluctuate with these

> kids! Even though functions very well when she is healthy and

> the aids and FM are working, those occasions aren't as common as we

> would like.

>

> has a moderate to severe loss in her right ear and severe to

> profound in her left ear. She speaks very well...however, her vocal

> cord is paralyzed as a result of her aortic arch reconstruction in

> March 04 when they clipped a nerve. This makes her voice quiet and

> raspy, but she is getting louder as her other cords accommodate a bit.

>

> will be a fourth grader. She only has 11 kids in her class, as

> we live in a rural area. Very good for her. Not so good for the

> school system, as they are in danger of not being able to fund a

> school...

>

> Good luck with your school. You can always call in an advocate for the

> hearing impaired if you need to. We did. This was when was in

> preK...long story, but it was for her benefit, and everything worked

> out for the better for her.

>

> Also, remind the school that all the TV's that they use should be CC

> when Aubrie is viewing. Small thing, but huge difference!

> G

> On Sunday, August 21, 2005, at 08:26 AM, Michele Westmaas wrote:

>

> > -

> > I am going to print your email along with all of the others to bring to

> > our meeting. Remind me of 's aided hearing levels. Is her

> > speech

> > clear?? And, this is silly that I can't remember, but what grade is

> > she

> > in??? I know they are close in age but can't remember how close!

> >

> > I thought about the CC yesterday. I will turn it on today! She is a

> > good reader for her age so it will probably be helpful. As I read your

> > post, it occurred to me that Aubrie is a hearing-impaired child and

> > they

> > are trying to teach her as if she is hearing (as long as she has her

> > aides and FM). I'm not sure that's ok.

> >

> > Michele W

> >

> >>

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

> >> --

> >> YAHOO! GROUPS LINKS

> >>

> >> * Visit your group " CHARGE

> >> <http://groups.yahoo.com/group/CHARGE> " on the web.

> >>

> >> *

[Guest guest]

This is funny because I had all my sign language books learning signs in the

hospital when was born, as I new he was going to have some sort of

hearing loss, and I would sit for hours with him watching that darm

pulsoximeter going up and down as he was fighting just to breathe. The

doctors thought I was out of my mind as I would get over his face, with the

tape for the CPAP on him and everything and sign to him. I wasn't even sure

if he could see!

Debbie

RE: Re: Sign language

>

> I wish that I had said this as strongly and clearly. Over and over,

> communication, if not the only thing that matters, it's darn close. Martha

>

>

>

>

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@....

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Debbie - I think it makes perfect sense and was not odd at all. Why

wouldn't we want to communicate with our child just like anyone else would?

Kim

> This is funny because I had all my sign language books learning signs in the

> hospital when was born, as I new he was going to have some sort of

> hearing loss, and I would sit for hours with him watching that darm

> pulsoximeter going up and down as he was fighting just to breathe. The

> doctors thought I was out of my mind as I would get over his face, with the

> tape for the CPAP on him and everything and sign to him. I wasn't even sure

> if he could see!

>

>

>

> Debbie

>

>

>

> RE: Re: Sign language

>>

>> I wish that I had said this as strongly and clearly. Over and over,

>> communication, if not the only thing that matters, it's darn close. Martha

>>

>>

>>

>>

>

>

>

>

> 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@....

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

>

>

>

>

[Guest guest]

OMG , that's Joe's favorite childrens book -- but he doesn't have a

copy, i don't suppose you know the author? if not that's okay, now that i

have the title i'll be able to find it!!!

you're my heroine today!

thankyouthankyouthankyou

guess what My Cowboy's gettin for Christmas?

hehe

Cole

>

> -

> I hope that I will be on board with you! We'll see how this meeting

> goes. I think our deaf-blind consultant will be helping me with the

> argument. Aubrie and I signed when she was a baby. We had deaf

> specialists coming in to our house from infancy. It took me a long time

> to get motivated. The kid wouldn't look at me when I signed cuz she

> could hear enough -- or so she thought. But soon we got on track. At

> age 2, she had something like 75 expressive signs and only 10 verbal

> words. By age 4, she was talking more and signing less. Now she

> doesn't remember much sign at all. I still remember quite a bit when I

> review. Really, it won't be that hard for us to learn -- it's just

> getting the school on board and all using it.

>

> I also feel so ignorant at the conferences and when I go to our school

> for the deaf and I can't sign. I actually helped sign a bit with some

> deaf kids who came for horseback riding with our therapy group this

> summer. That was a good refresher -- and funny when the kids realized

> how poorly I signed! Imagine how inept our girls will feel when they

> can't communicate with their own CHARGE peers.

>

> Have you found the on-line sign dictionaries? If you google it, there

> are several. Some are better than others. It's nice if you can't find

> something in your book or want to see a video rather than just the

> drawing.

>

> Keep it up with Carmen and I'll see what happens tomorrow. Thanks for

> the support. It's always better to tackle a new challenge with a partner!

>

> Oh-- let me tell you about when Aubrie was little. She might have been

> 2 or so. The deaf consultant taught me a favorite book in sign (The

> Little Mouse, the Big Hungry Bear, and the Red Ripe Strawberry). I

> read/signed it to Aubrie over and over. She loved it. She could sign

> to me about what will come next, who is it, etc. Sign was how I knew

> that she could understand the story, make connections, etc. Without it,

> I'd have no clue. And she would not be developing concepts without the

> language to communicate those connections. A book is a good place to

> start sign because it gives you a whole conversation or topic.

>

> 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@....

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org <http://www.chargesyndrome.org/> or by calling

> 1-.

>

>

>

>

[Guest guest]

I believe the name of the author is Audrey Woods - although it has been

about 16 years ago that I bought it and yes my kids loved it too. Kim

> OMG , that's Joe's favorite childrens book -- but he doesn't have a

> copy, i don't suppose you know the author? if not that's okay, now that i

> have the title i'll be able to find it!!!

> you're my heroine today!

> thankyouthankyouthankyou

> guess what My Cowboy's gettin for Christmas?

> hehe

> Cole

>

>

>>

>> -

>> I hope that I will be on board with you! We'll see how this meeting

>> goes. I think our deaf-blind consultant will be helping me with the

>> argument. Aubrie and I signed when she was a baby. We had deaf

>> specialists coming in to our house from infancy. It took me a long time

>> to get motivated. The kid wouldn't look at me when I signed cuz she

>> could hear enough -- or so she thought. But soon we got on track. At

>> age 2, she had something like 75 expressive signs and only 10 verbal

>> words. By age 4, she was talking more and signing less. Now she

>> doesn't remember much sign at all. I still remember quite a bit when I

>> review. Really, it won't be that hard for us to learn -- it's just

>> getting the school on board and all using it.

>>

>> I also feel so ignorant at the conferences and when I go to our school

>> for the deaf and I can't sign. I actually helped sign a bit with some

>> deaf kids who came for horseback riding with our therapy group this

>> summer. That was a good refresher -- and funny when the kids realized

>> how poorly I signed! Imagine how inept our girls will feel when they

>> can't communicate with their own CHARGE peers.

>>

>> Have you found the on-line sign dictionaries? If you google it, there

>> are several. Some are better than others. It's nice if you can't find

>> something in your book or want to see a video rather than just the

>> drawing.

>>

>> Keep it up with Carmen and I'll see what happens tomorrow. Thanks for

>> the support. It's always better to tackle a new challenge with a partner!

>>

>> Oh-- let me tell you about when Aubrie was little. She might have been

>> 2 or so. The deaf consultant taught me a favorite book in sign (The

>> Little Mouse, the Big Hungry Bear, and the Red Ripe Strawberry). I

>> read/signed it to Aubrie over and over. She loved it. She could sign

>> to me about what will come next, who is it, etc. Sign was how I knew

>> that she could understand the story, make connections, etc. Without it,

>> I'd have no clue. And she would not be developing concepts without the

>> language to communicate those connections. A book is a good place to

>> start sign because it gives you a whole conversation or topic.

>>

>> 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@....

>> 8th International

>> CHARGE Syndrome Conference, July, 2007. Information will be available at

>> www.chargesyndrome.org <http://www.chargesyndrome.org/> or by calling

>> 1-.

>>

>>

>>

>>

[Guest guest]

:

I don't think it is ever too late! I have known students (even in high

school) who arrive at the Deaf School with no signing ability, and in just a

few weeks they are right in there. Keep at it.

When we started signing with , she was only 9 months old and it was

somewhat sporadic on our part. She was 2 when we really got " serious " about

it - and she was able to go out more. I would take her to the Deaf School

for 2 days a week for 2-3 hours and she had lots of one-on-one interaction

with preschool staff and 3-4 other children. We went with a home nurse

because was still trached. They worked a lot with attention-getting

aspects and basics of learning that a sign had meaning.

It was hard to keep wanting to learn ASL at first, because it seemed like

nothing was connecting. We didn't get any expressive language from her for

a long time. I think what kept us going was that I kept going to the Deaf

School and needed to sign with the staff/teachers. Finally it dawned on me

that was attending to signs and making connections. It was probably

not until she was around 4 that we got any real expressive language from

her. Part of that may have been motor skill issues. We're not really sure,

but she finally started signing and hasn't stopped! It seems like it took a

looooonnnnggg time of " inputting " before we got any " output " . It has all

been worth it!

Keep plugging away, and it will come.

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (16 yrs., Asperger Syndrome)

Mom of (13 yrs., CHARGE+, JRA)

Wife of Rick (I'm still workin' on the railroad!)

oganm@...

Fishers, IN

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Jayem14@...

Sent: Monday, August 22, 2005 9:21 PM

To: CHARGE

Subject: Re: Re: Sign language

I must have missed something-what book are you all talking about?

On another note, has anyone started signing at a later age with their kids?

Jay and I sign (not nearly enough but we are working on it) to the boys

because they have very limited verbal skills and I was just wondering is

there a

point that you miss the boat on signing. I will never give up because I

feel

that the boys are starting to understand, but sometimes I am concerned that

we will not have any communication tools, especially for .

signs more than Jay and I and uses PECS and an Augmentative, but Matt has

not

really picked up on any one area thus far. We keep plugging away but just

curious as too being to late on certain things.

Thanks,

Murray

mom to twin Chargers and and wife to Jay

[Guest guest]

In my experience with , I think she, at least, was a sponge even

though we didn't see it. As Andy tells every " professional, " we'll use signs

endlessly, and we'll see her use them a year or so later and not again for

another year. That's an over-statement now at her age, but you get the

idea. I used to have the how-we-learn-language theory down pat, but I'm

afraid I've lost it over the years. At any rate, kids with normal hearing,

much less normal hearing and vision, have to hear words many, many

times before they use the words expressively. Just multiply the the time

necessary again and again for our kids. Martha

One fairly good example. While at Perkins, had a job picking up

" old flowers " (there was a flower delivery service). On one break, she

walked into our kitchen, spotted the flowers I'd forgotten to discard before

flying to Boston, and signed " old flowers. " Her teacher that year was just

floored. She'd carried the concept from her job to our house. No one

knew the language was getting to her in such a meaningful way.