communication

[Guest guest]

,

thanks. It is so interesting because this is the exact same philosophy that many

of us lived through when the oralism v. sign debate was raging in the early

70s--if the kids signed then they would never speak. IT became very apparent

during that time that the kids who had learned or were using signs had BETTER

speech and BETTER communication all around. They say what goes around comes

around and here we go again with communication/language debates!!

I agree with you, however, that ultimately your kids are your kids and you DO

know what is best!! And.. you have the longer, bigger picture of seeing how

they use all of their communication OUTSIDE of the therapy room.

pam

[Guest guest]

,

This is Betsy from DB-LINK. Gallaudet has a Cochlear Implant Education

Center. They have many resources on their website including a series of

papers addressing the issues of sign language and CI.

http://clerccenter.gallaudet.edu/Products/Sharing-Ideas/CI/index.html

Hope this is helpful.

Betsy

Betsy L. McGinnity

Information Specialist

Perkins DB-LINK

betsy.mcginnity@...

http://dblink.org <http://dblink.org/>

[Guest guest]

-

I had the same anxiety starting preschool, then starting kindergarten --

where to go, what to expect, what she needed. It all worked out fine.

I think the worst part is the fear of the unknown and dealing with the

annual changes. You'll notice on the list that we are all on edge in

the spring at IEP time and at the start of the new year. Everyone is on

pins and needles wondering if something bad is going to start, if things

will work out well, how much trouble this meeting or this year will be.

It's all natural worry, but we have to remind ourselves that we'd be

better off trying to minimize it. It's like doctor appts when you worry

even tho it's just a " check-up " cuz you never know what wonderful new

bit of info might come out. I think we're all just naturally guarded

and wary of when the next issue will rear it's ugly head. But I try to

remind myself not to worry in advance of things that might warrant it --

but instead to focus on the things right now that really do need my

attention. Time to go and take my own advice and chill out a bit!

Michele W

Aubrie's mom

>

[Guest guest]

Ellen-

Is your speech clear enough that even strangers understand you? This is

a big problem for us with Aubrie. Her speech is very difficult to

understand. Signing won't help outsiders to get what she's trying to

say but it could help with friends and family.

Michele W

Aubrie's mom

>

[Guest guest]

Thanks, Bonnie. I am feeling a bit better today. I've been overwhelmed

just knowing that the whole Perkins report will begin a bunch of new

" stuff " . Then thinking about signing and tech (which are included in

that) just gets me tired and feeling guilty for not doing more at home.

It's so hard to know if we're balancing everything right.

Michele W

>

[Guest guest]

i've always been taught that if you do what you love and love what you

do then you'll be happy and things will be taken care of... i havn't

always listened and i know i'm young -- but so far my personal

experience has upheld this theory

Cole -- toddler teacher - since i took the job somehow there's always

been 'just enough' but i've been happy.

On Wed, 9 Feb 2005 08:44:19 -0500, pam.ryan@...

wrote:

> Oh, Bonnie,

> You give me way too much credit! I have been lucky in my life to have a

> found a job I love and a place to do what I do,that I also love.

>

> And... I have learned from the best all along--the parents! So, thank you

> so much--I appreciate the sentiment, but there are others, too and you would

> be one of those people to follow.

>

> pam

>

>

>

[Guest guest]

hi all, I have not read all the discussion about communication, just drips and

drabs, so I hope I am not repeating or stepping on any toes. just my opinion.

When tim lost part of his hearing, my objective was to keep him as " normal " as

possible, but make sure he was learning the best he could without putting undue

pressure or frustration. when he was in kindergarten (mainstreamed) he lost

more hearing and got aides. he did well, but in 1st grade he fell behind in

math and reading. the fm system I had to end up getting--and he didn't get it

until Feb. of that year. they either forgot to use it left it on, what ever.

they just weren't trained to teach him. the speech therapist REFUSED to even

talk about signing and thought we should look into assistive devices. He hears

and speaks!!! we just want the sign for those things he may be missing, or if

he loses more hearing he'll be ahead of the game.

they would not give an inch!!! which is why I explored other educational

settings. luckily, we found a great fit for him !! a school for the deaf and

hard of hearing. TOTAL COMMUNICATION!!! he signs so well, he doesn't realize

he's doing it especially when he reads or spells. and it has helped his

learning. his speech improved, and it is esl---they said it's easier because of

learning to read etc. but he can sign with anyone. he does ask people to

repeat themselves--he will talk to anyone anytime anywhere--if HE wants to and

has no real problems.

however, pat and i are lacking in our ssigning capabilities....it is one more

thing to do. it's not that we don't want to, but becuase he can communicate w/o

it, it's not a priority right now. I feel it should be, but we just don't have

enough hours in the day. good luck on your search to find the answer for Aubrie

and yourself ---one day at a time right?

hugs,

[Guest guest]

-

I am trying to remember Aubrie and Tim next to each other at the

conference. I can see them, but I can't remember how they communicated

and how Tim spoke. Darn! They seem very similar in many ways.

It is funny that you brought this up just now because I have been

emailing all day with ISD to see if they can support our setting up of a

sign club, if their 1st grade group is verbal, if they would be a good

alternative placement for Aubrie. I don't really want her to leave the

community, and she is doing well academically, but I wonder if they

could better meet her communication and technology needs.

They 5 1st graders, all her age, all on grade-level in reading and

math. The one child who is HH goes to public school for the am for

language, reading, etc. That's what I think would be best for Aubrie.

So that would mean changing her from one school to 2 schools and a 45-60

min bus ride one way. I don't know -- but I think it's worth checking into.

Michele W

>

[Guest guest]

i was abotu three or four i did and still do have a bit of trouble

with some sounds liek sometimes i will be reading aloud and ill have

my face in the page every one tells me to look up and read they even

try enlarging the work but i still do it and i have voice coaching to

bring the pitch down im much better but if i dont have the aids in

ill be screaming love Ellen

> & gt; & gt; Hi--I am finally back online and caught up on emails.

Whenever I

> & gt;go out of

> & gt; & gt; town it completely throws my entire life off.

> & gt; & gt; I have been reading the communication posts and have

been

> & gt;totally

> & gt; & gt; engrossed. I don't really have much to add. Now that

Rose has

> the

> & gt;CI, and

> & gt; & gt; it is working well, we have been told by some to stop

signing. I

> & gt;only sign

> & gt; & gt; a bit with her, but I do notice that it helps at times

and Rose

> & gt;usually says

> & gt; & gt; the word in addition to the sign when she uses signs. At

her

> & gt;preschool they

> & gt; & gt; use sign and speech for all of the kids. It is an

integrated

> & gt;preschool.

> & gt; & gt; Over the last four years I have had similiar issues

,

> & gt;feeling

> & gt; & gt; overwhelmed, feeling like there is always so much more I

can be

> & gt;doing. I

> & gt; & gt; feel that way about certain things now. I realize that

what I

> tend

> & gt;to do is

> & gt; & gt; focus on one issue at a time. For awhile our focus was

signing,

> & gt;then

> & gt; & gt; hearing, then eating, sitting and walking were thrown in

there,

> & gt;then back to

> & gt; & gt; hearing, then eating again, you get the picture.

> & gt; & gt; , it seems like your being led to follow this

signing path

> & gt;right

> & gt; & gt; now, I sense that you don't need to make a huge jump

right now in

> & gt;getting it

> & gt; & gt; for her in school, but it sounds right to start with one

step and

> & gt;if you

> & gt; & gt; need to go further I know you will. I just love reading

> & gt;everyone's

> & gt; & gt; different ideas, I feel like I am just soaking it up!

> & gt; & gt; My current challenge right now with Rose, is that she

will be

> & gt;going to

> & gt; & gt; kindergarten next year. I don't know where she will be

yet. I

> & gt;would like

> & gt; & gt; her to go to a charter school we have here that has

really small

> & gt;classes, it

> & gt; & gt; is K-8, and I like the idea of her being with the same

group of

> & gt;kids over

> & gt; & gt; time, especially with further sugeries, etc. They have a

lottery

> & gt;system for

> & gt; & gt; getting into their school. I tend to get really

overwhelmed when

> I

> & gt;think of

> & gt; & gt; next year, I don't know what to ask for for her in her

classroom,

> & gt;etc. But

> & gt; & gt; I just keep trying to trust and have faith that all will

come. I

> & gt;always

> & gt; & gt; think that if something is not working we can change it,

or if we

> & gt;need to

> & gt; & gt; add something I will make it happen. I also think I just

am not

> & gt;looking

> & gt; & gt; forward to more changes. So far I have been incredibly

fortunate

> & gt;in that I

> & gt; & gt; have had no issues with school systems in any of the

requests I

> & gt;have made.

> & gt; & gt; Our IEPs have all been fine so far.,,.....

> & gt; & gt;

> & gt; & gt;

> & gt; & gt; Beckett--mom to Rose 4, Henry 6 and Forrest 2,

also our

> new

> & gt;Puppy

> & gt; & gt; Shep 5months!

> & gt; & gt;

> & gt; & gt; ps--Rose's g-tube site has closed beautifully! She did

have a bad

> & gt;reaction

> & gt; & gt; to the band-aid, but otherwise everything is great! I am

so happy

> & gt;for her!

> & gt;

> & gt;

> & gt;

[Guest guest]

" In the meantime, I will not beat myself up for not doing it now or

yesterday " .

Hi Michele,

I am a couple of days late on this, but I have to say, someone on this

listserve once advised me not to beat myself up about the things I tell

myself I should do or should have done when I have ten million others to do

and not the head space or the practical means yet to tackle my " shoulds " .

Hmmm, now let me see, who was it? IT WAS YOU! Please take your own very

valuable advise and stop driving yourself mad. As Kim says, when the time

is right for you, you will know and knowing you, you will go for it.

In the meantime, I have a little suggestion which may or may not work. I

have noted from your past posts that Aubrie loves music, drama etc. Perhaps

even before you set up that sign club, just when you two are doing the

mummy-daughter thing you might sing and sign dramatically or even use

gestures etc just for fun. You need a very basic small vocab for this and

it probably exists in your memory from past times. It may or may not serve

to start her being interested in communication by hands. I find that when

loses interest in communication, singing a song and really

exagerrating the signs sometimes makes her laugh which makes her interested

in what I am doing (albeit short-lived). The same goes for when we are

reading stories.

You never know what will capture her interest. There again, maybe when she

becomes aware of the fact that she is missing something will be her own

time.

With you on this communication headache......

Flo

P.S. Oh, by the way, when you do get that club going, please let us know as

I will pick your brain as I have a fantasy about starting one at my younger

hearing daughter's future school to keep her interest in sign. Hmmm, she is

only 2 so we are talking 2 years' time and I may have run out of momentum,

energy, time etc etc.

[Guest guest]

you know... my entire class attends better at story/song time if i

sign, if i get lazy (or more likely sore) and don't sign for a story

the kids start getting restless... never really thought about it

before... but it's definitely true now that i do... and they won't

even do flashcards unless we do signs at the same time... including

Ethan... i've got to tell his ECI person that... he only loses

interest in storytime and flashcards if i stop signing or his mom

comes in the room or something big distracts him... i gotta call the

daycare and talk to his mom

Thanks Flo for pointing this out (however unintentionally lol)

Cole

>

>

>

>

> " In the meantime, I will not beat myself up for not doing it now or

> yesterday " .

>

> Hi Michele,

> I am a couple of days late on this, but I have to say, someone on this

> listserve once advised me not to beat myself up about the things I tell

> myself I should do or should have done when I have ten million others to do

> and not the head space or the practical means yet to tackle my " shoulds " .

> Hmmm, now let me see, who was it? IT WAS YOU! Please take your own very

> valuable advise and stop driving yourself mad. As Kim says, when the time

> is right for you, you will know and knowing you, you will go for it.

>

> In the meantime, I have a little suggestion which may or may not work. I

> have noted from your past posts that Aubrie loves music, drama etc. Perhaps

> even before you set up that sign club, just when you two are doing the

> mummy-daughter thing you might sing and sign dramatically or even use

> gestures etc just for fun. You need a very basic small vocab for this and

> it probably exists in your memory from past times. It may or may not serve

> to start her being interested in communication by hands. I find that when

> loses interest in communication, singing a song and really

> exagerrating the signs sometimes makes her laugh which makes her interested

> in what I am doing (albeit short-lived). The same goes for when we are

> reading stories.

>

> You never know what will capture her interest. There again, maybe when she

> becomes aware of the fact that she is missing something will be her own

> time.

>

> With you on this communication headache......

> Flo

>

> P.S. Oh, by the way, when you do get that club going, please let us know as

> I will pick your brain as I have a fantasy about starting one at my younger

> hearing daughter's future school to keep her interest in sign. Hmmm, she is

> only 2 so we are talking 2 years' time and I may have run out of momentum,

> energy, time etc etc.

>

>

>

>

> 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, hope you find the right placement for Aubrie. It was such a relief

to know he's in a great place right now. is it perfect? no, what school is,

but he's learning so much, w/o the frustration--or less frustration then he

had in our school system. of course there is always going to be should I

have...what if we... do I need to...and the extra drs. appts etc are alot.

not as much as they used to be, or as you have gone through the last year,

but they are still they and the scheduling is nuts.

my best advice is go with your gut feeling, and as far as the signing

goes--it will so easy for her to pick up, and hopefully you can keep up. I

couldnt', but tim is immersed in it all day long--a good thing for him.

have a great night --it's cold and windy here, but the snow missed us

maria

Re: communication

>

> -

> I am trying to remember Aubrie and Tim next to each other at the

> conference. I can see them, but I can't remember how they communicated

> and how Tim spoke. Darn! They seem very similar in many ways.

>

> It is funny that you brought this up just now because I have been

> emailing all day with ISD to see if they can support our setting up of a

> sign club, if their 1st grade group is verbal, if they would be a good

> alternative placement for Aubrie. I don't really want her to leave the

> community, and she is doing well academically, but I wonder if they

> could better meet her communication and technology needs.

>

> They 5 1st graders, all her age, all on grade-level in reading and

> math. The one child who is HH goes to public school for the am for

> language, reading, etc. That's what I think would be best for Aubrie.

> So that would mean changing her from one school to 2 schools and a 45-60

> min bus ride one way. I don't know -- but I think it's worth checking

into.

>

> 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]

Flo-

Thanks for the reminder. Isn't it funny how much easier it is to advise

others than to figure out how to solve our own problems??

Aubrie is very excited to learn sign. She'd love it if I signed all the

time just for the fun of it. If I could get her a fluent teacher, we

could both catch on quickly, I think! The motivation is there, it's the

how to. Now, attaching it to music is a great way for both of us to

practice without just doing some rote thing. Thanks for the suggestion.

When I get going on the club, you can bet I'll be telling you all about

it.

Michele W

Aubrie's mom

>

[Guest guest]

-

Thanks. I don't know the right choice. She's not frustrated at school

now, but her personality is such that she doesn't get easily

frustrated. It'd be awhile before she'd figure out that there was

something missing or that she was behind or whatever. We may decide

that where we are is best, but it never hurts to consider all the

options (over and over again).

Michele W

>

[Guest guest]

,

I've just returned from a very sad time in NY...I need to get back to

a routine asap...(makes me appreciate even more how important routine

is for our kids!) So, can you pls re-subscribe me to the CHARGE

list...have missed you all! Sharon from West Oz

[Guest guest]

Sharon-

I'm sorry for your NY sadness. I hope you are feeling cheery and back

to " normal " soon in Oz. I can't help but picture Munchkinland whenever

I see your sig line -- and that makes me cheery!

Michele W

Aubrie's mom

>

[Guest guest]

Sharon,

welcome back; I (probably we) missed you.

hope you are ok.

pam

[Guest guest]

we all missed you why did you unsubscribe i think you go to

resubscribe i want to ask you on the charge website are you getting

the dark blue backgeround i am here in sydney its starting to make it

hard for me to read it was ok light blue but now the lincvks is dark

blue which is very hard to read love ellen howe

> ,

> I've just returned from a very sad time in NY...I need to get back

to

> a routine asap...(makes me appreciate even more how important

routine

> is for our kids!) So, can you pls re-subscribe me to the CHARGE

> list...have missed you all! Sharon from West Oz