Re: New to list

[Guest guest]

Lori

I am in Canada but any info that you get at the work shop that you could

pass along through the list my private e-mail or snail mail would be greatly

appriciated.

Thanks

~ and 's Mom

At 09:17 PM 9/6/99 EDT, you wrote:

>From: LCorc16@...

>

>In a message dated 9/6/99 8:56:22 PM Eastern Daylight Time, dehahn@...

>writes:

>

><< I live in Belchertown and work at Quantum in Shrewsbury. We used to live

>in

> Millbury, and have lots of friends in the Worcester area. >>

>Hi Chris! I first taught at Belchertown High and what a beautiful area! I

>grew up in Worcester. Did you have your children when you were living in

>Millbury? I found my town to be very difficult. We fought to send Audrey to

>Worcester for the summer and what a difference. I am going to a conference in

>Springfield put on by the e school called but don't quote me - Hearing

>Impaired: Language and Literacy. Are you going? Or is anyone else who lives

>around Massachusetts attending? I would love to hook up with anyone. I am so

>excited because my daughter is three and I want to hear what they recommend

>for reading and writing. If anyone is interested email me and I can tell you

>more. The application and types of workshops being offered are upstairs and I

>ma lazy right now. I am avoiding my work writing a syllabus for my classes

>which start next week. bye Lori

>

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

[Guest guest]

>From: Theathdi@...

>This is signed english not PSE and not Pidgin

PSE is an acronym that stand for Pidgin Signed English.

Celeste

[Guest guest]

Hello ,

We also use PSE (pidgeon signed english) with our soon to be 5-year old

HoH daughter - when her hearing aids are off or when the noise levels are

too high or when she isn't picking out the lyrics of a song (twinkle,

twinkle aya a). PSE is applying those ASL signs you see in a book,

with some knowledge of the you/me/they verb indicators, in your normal

English word order.

I have taken a whole two semesters of ASL, so I am not any sort of

expert, but one of the first differences you learn in ASL syntax is

" [live] [where] {Q} " - who, what, where, why are always last and the

{question look for these is a special frowning face}. However, if I

was signing around my daughter or even signing to a deaf person we

had met, I would most likely sign " [where] [you] [live] {?} " . So

this is pidgeon because I am not signing " [where] [do] [you] [live] "

as in SEE sign (signed exact english) and its not ASL either. It's

an mishmash that can be done by non-ASL specialists. So far, the

deaf people I have inflicted my PSE on have usually understood and

made allowances for me as a hearing parent who is trying.

With my daughter, I usually speak at the same time, since she lip reads

too, so using English word order helps her and it helps me because

I don't know enough ASL to use proper ASL syntax at all. And what I

DO know, is something I have to think about ahead of my signing.

It also helps with song lyrics alot. She has a really tough time

picking out words in a song (so do I, but I can read). So I will

first slow the song way down and try to differentiate the words

that way, so she can pick them out. Then I will use a visual aide -

either a picture or sign to help her or even a phonetic cue if

she is just using the wrong word start or end. Basically I use

whatever works.

Well, this is more than you asked for. I do recommend an ASL class

if one is available. We have classes available through a local

community college for adults and through a local church for children

through adults. It is here that I found out that most deaf

people, at least in this area, are able to interpret ASL, PSE and

SEE well enough to understand you. And if that doesn't work,

finger spelling helps too.

My daughter understands sign but chooses to speak in response. Taht

has worked out well for us, but when she and cochlear implant boy

were playing in the pool it made for a funny translation game. Kathy

would say something and I or the other mother would have to sign it

to the other child, who would respond verbally and then we would have

to sign it back. We tried to get them to sign to each other, but

their expressive signing was poor. We are going to work on that

more. (Lip reading someone you don't know well is difficult,

and both children have speech substitutions that make lip reading

them incredibly difficult!). They whole situation made the other

mother and me want to cry - so we burst out laughing instead. It

will be a good story - sometime in the future.

Terri - mother of Kathy (HoH, profound to severe - rising)

[Guest guest]

>an mishmash that can be done by non-ASL specialists. So far, the

>deaf people I have inflicted my PSE on have usually understood and

>made allowances for me as a hearing parent who is trying.

Terri,

I had to laugh about this statement. I too, often " inflict " my sign on deaf

people. I have had deaf people introduce me to other deaf people with

almost this same qualifier. " She signs a lot of English, but she is

trying. " You get a lot of points for at least trying. Too many deaf people

grew up with neither parent trying to learn any sign at all.

>

>With my daughter, I usually speak at the same time, since she lip reads

>too, so using English word order helps her and it helps me because

>I don't know enough ASL to use proper ASL syntax at all. And what I

>DO know, is something I have to think about ahead of my signing.

Same here.

>

>It also helps with song lyrics alot. She has a really tough time

>picking out words in a song (so do I, but I can read). So I will

>first slow the song way down and try to differentiate the words

>that way, so she can pick them out. Then I will use a visual aide -

>either a picture or sign to help her or even a phonetic cue if

>she is just using the wrong word start or end. Basically I use

>whatever works.

Amen, whatever works.

>

>Well, this is more than you asked for. I do recommend an ASL class

>if one is available. We have classes available through a local

>community college for adults and through a local church for children

>through adults. It is here that I found out that most deaf

>people, at least in this area, are able to interpret ASL, PSE and

>SEE well enough to understand you. And if that doesn't work,

>finger spelling helps too.

The only classes offered here are in ASL. I have never seen a class offered

in SEE.

>

>My daughter understands sign but chooses to speak in response.

Petya too. Although if she is having trouble hearing she will sign as she

speaks. This is my clue to sign to her because she is in a difficult

listening situation.

Barb

[Guest guest]

In a message dated 9/6/99 10:42:04 PM Eastern Daylight Time,

tonya14@... writes:

<< I live in pittsfield, I'm planning on going to the second day of the

e conference.I have an eight year old daughter

>>

As it gets closer maybe we can try to meet there just to say Hi! I have three

year old hard of hearing daughter. She has tested for autoimmune inner ear

problems and also subjective to a genetic progressive loss like myself. Hope

to hear from you. Lori

[Guest guest]

In a message dated 9/6/99 9:46:47 PM Eastern Daylight Time, wog@...

writes:

<< Any info that you get that could be copied and mailed I would be happy >>

Hi! When I get back from the workshops in October I'll get in touch with you.

If I forget please email me. My daughter Audrey they are guessing it's

progressive because my loss is. Take care Lori

[Guest guest]

At 10:36 PM 9/6/99 -0700, you wrote:

>

>

>

>Hello ,

>

>Well, this is more than you asked for.

Terri

That was just great Thanks much!

[Guest guest]

At 08:48 AM 9/7/99 -0400, you wrote:

>

>

>>an mishmash that can be done by non-ASL specialists. So far, the

>>deaf people I have inflicted my PSE on have usually understood and

>>made allowances for me as a hearing parent who is trying.

>

>Terri,

>

>I had to laugh about this statement. I too, often " inflict " my sign on deaf

>people.

>>

>>With my daughter, I usually speak at the same time, since she lip reads

>>too, so using English word order helps her and it helps me because

>>I don't know enough ASL to use proper ASL syntax at all. And what I

>>DO know, is something I have to think about ahead of my signing.

>

I was under the understanding that you could not speak at the same time with

ASL and that is why people hear have been so reluctant to teach us. My one

freind knows ASL quite well and I keep asking her to use it when she is

around so we could try to get the idea and maybe pick up a bit but she

refuses to speak at the same time so I have NO clue wha tshe is saying. If

she would speak and sign at the same time I might be able to learn some from

her....oh well just a little frusteration that needed to come out!

~ and 's Mom

>

>>

[Guest guest]

> I have three

> year old hard of hearing daughter. She has tested for autoimmune inner ear

> problems and also subjective to a genetic progressive loss like myself. Hope

> to hear from you. Lori

Lori,

Could you give a little information about how the autoimmunne inner ear problems

were identified and what if any suggestions have been made for treatment?

I have a daughter who has had infections and on going problems and now that she

is older (she just turned 13) I had hoped that they might improve. But so far,

they

have not so I'm just wondering what your experience has been?

Thanks very much.

wendy

Portland, OR

[Guest guest]

>I was under the understanding that you could not speak at the same time

with

>ASL and that is why people hear have been so reluctant to teach us. My one

>freind knows ASL quite well and I keep asking her to use it when she is

>around so we could try to get the idea and maybe pick up a bit but she

>refuses to speak at the same time so I have NO clue wha tshe is saying. If

>she would speak and sign at the same time I might be able to learn some

from

>her....oh well just a little frusteration that needed to come out!

>~ and 's Mom

Would you friend be willing to set up a regular weekly or twice weekly

lesson with you?

Barb

[Guest guest]

WITH OUT BEING INSULTING TO HER AS SHE IS A GOOD FRIEND SHE REALLY LACKS THE

PATIENTS FOR TEACHING...I THINK I WILL JUST ENROLL IN ASL...IT SEEMS TO BE A

GOOD START.

AMANDA~MATTHEW AND VICTORIA'S MOM

At 01:05 PM 9/7/99 -0400, you wrote:

>

>

>

>>I was under the understanding that you could not speak at the same time

>with

>>ASL and that is why people hear have been so reluctant to teach us. My one

>>freind knows ASL quite well and I keep asking her to use it when she is

>>around so we could try to get the idea and maybe pick up a bit but she

>>refuses to speak at the same time so I have NO clue wha tshe is saying. If

>>she would speak and sign at the same time I might be able to learn some

>from

>>her....oh well just a little frusteration that needed to come out!

>>~ and 's Mom

>

>

>Would you friend be willing to set up a regular weekly or twice weekly

>lesson with you?

>

>Barb

>

>

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

[Guest guest]

In a message dated 9/7/99 8:24:42 PM Eastern Daylight Time, dehahn@...

writes:

<< This is the Mainstream Conference. I will be working it both days, as my

kids go to e and it's one way I can help out. >>

Hi Chris! I will definitely look you up. Do you happen to know if the rooms

are really big for the workshops. I am hard of hearing, moderate loss, and

was wondering if I needed an FM. My hearing aides are pretty good but if the

room is very big and the workshops are filled with people an FM is better. If

you can't answer don't worry I'll try the e school. I am very excited

and hope someone from my district attends. Look out for me Lori

[Guest guest]

In a message dated 9/7/99 1:03:11 PM Eastern Daylight Time,

keedy@... writes:

<< Could you give a little information about how the autoimmunne inner ear

problems were identified and what if any suggestions have been made for

treatment?

>>

Hi !

Audrey had blood work drawn after having a CT scan. They felt everything

would be fine because of the genetics in my mom's, dad's and my husband's

family. Well, guess what she had an abnormal level for antibodies for

Collagen Type II. This protein is found in the inner ear. Basically Audrey is

producing antibodies and killing off this protein found normally in the inner

ear. Treatment? It's controversial until she losing permanently big time.

Usually it's prednisone. The problem is Audrey is young -- three years old

and I don't know if I want to expose her yet. Studies have shown it's slows

it down but doesn't stop it. This will allow her learn more until she loses

more. I don't know. It's a personal decision. I know he antibodies are

increasing and killing off her own cells. She actually has very little ear

infections. My other daughters ear infections have been awful and we have

gone through many tubes. We haven't tested them yet. I hope it helps. I'll

definitely can tell you more if you want. Lori

[Guest guest]

At 09:17 PM 9/6/99 -0400, LCorc16@... wrote:

>From: LCorc16@...

>

>In a message dated 9/6/99 8:56:22 PM Eastern Daylight Time, dehahn@...

>writes:

>

><< I live in Belchertown and work at Quantum in Shrewsbury. We used to live

>in

> Millbury, and have lots of friends in the Worcester area. >>

>Hi Chris! I first taught at Belchertown High and what a beautiful area! I

>grew up in Worcester. Did you have your children when you were living in

>Millbury?

Yes, we had both of them there. Millbury was unbelievable. We worked very

closely with our SPED director. She visited every program with us,

including e, and let us make the decision as a team. Belchertown is

also very good, but I had to lay some ground work first, by becoming an

officer in the PAC and by getting elected to the SPED Steering Committee.

BTW, you might not know, but we are building a new high school. The old one

will become a second middle school.

> I found my town to be very difficult.

Worcester is great for deaf kids, as long as you want to send them to their

in-house program, which is voice-off ASL. They pretend to have a SEE/simcom

program, but your child will be alone in the classroom. Oral? Forget it.

Friends have sued and won, to send them to e, but they will fight you

all the way.

There is a parent's group in Central Mass, CMPA, which we aren't as active

in as we used to be when we lived there, but could be of help to you. If

you like, I'll put you in touch with another family from the group.

>We fought to send Audrey to

>Worcester for the summer and what a difference. I am going to a conference in

>Springfield put on by the e school called but don't quote me - Hearing

>Impaired: Language and Literacy. Are you going?

This is the Mainstream Conference. I will be working it both days, as my

kids go to e and it's one way I can help out. I will be running the

audio in the large rooms and duplicating audio tapes of the sessions, for

sale. Please, if you see me, introduce yourself. I'll be wearing a nametag

as will everyone else.

Chris

<< Christofer deHahn..................Manager, EDA Systems and Test >>

<< Quantum Corporation...........Shrewsbury, Massachusetts, USA >>

[Guest guest]

In a message dated 9/8/99 8:02:03 PM Eastern Daylight Time, dehahn@...

writes:

<< The workshop rooms are traditionally small. Tell the facilitator that you

are HOH and that you will need to sit up front. If you need an FM, request

it ahead of time, and I'd bet you could get one. The large room last year

had CART, and I expect it to this year as well.

>>

Thanks for the info and great advice. See you there - Lori

[Guest guest]

At 10:29 PM 9/7/99 -0400, LCorc16@... wrote:

>From: LCorc16@...

>

>In a message dated 9/7/99 8:24:42 PM Eastern Daylight Time, dehahn@...

>writes:

>

><< This is the Mainstream Conference. I will be working it both days, as my

> kids go to e and it's one way I can help out. >>

>Hi Chris! I will definitely look you up. Do you happen to know if the rooms

>are really big for the workshops. I am hard of hearing, moderate loss, and

>was wondering if I needed an FM. My hearing aides are pretty good but if the

>room is very big and the workshops are filled with people an FM is better. If

>you can't answer don't worry I'll try the e school. I am very excited

>and hope someone from my district attends. Look out for me Lori

The workshop rooms are traditionally small. Tell the facilitator that you

are HOH and that you will need to sit up front. If you need an FM, request

it ahead of time, and I'd bet you could get one. The large room last year

had CART, and I expect it to this year as well.

Chris

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

[Guest guest]

LCorc16@... wrote:

> From: LCorc16@...

>

> In a message dated 9/6/99 10:42:04 PM Eastern Daylight Time,

> tonya14@... writes:

>

> << I live in pittsfield, I'm planning on going to the second day of the

> e conference.I have an eight year old daughter

> >>

> As it gets closer maybe we can try to meet there just to say Hi! I have three

> year old hard of hearing daughter. She has tested for autoimmune inner ear

> problems and also subjective to a genetic progressive loss like myself. Hope

> to hear from you. Lori

>

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

[Guest guest]

LCorc16@... wrote:

> From: LCorc16@...

>

> In a message dated 9/6/99 10:42:04 PM Eastern Daylight Time,

> tonya14@... writes:

>

> << I live in pittsfield, I'm planning on going to the second day of the

> e conference.I have an eight year old daughter

> >>

> As it gets closer maybe we can try to meet there just to say Hi! I have three

> year old hard of hearing daughter. She has tested for autoimmune inner ear

> problems and also subjective to a genetic progressive loss like myself. Hope

> to hear from you. Lori

>

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

[Guest guest]

In a message dated 9/8/99 11:16:26 PM Eastern Daylight Time,

tonya14@... writes:

<< My daughter also has a progressive loss from CMV but when we were at

Boston Childrens last year they also identified an autoimmune problem. >>

Do you know what and how they identified it? I am just curious. I am at UMass

Medical Center in Worcester. I asked about info at Mass Eye and Ear and have

received some info but I thought if they (her current ENT) wanted to put her

on prednisone then I would get a second opinion and try Mass Eye and Ear or

Children's. Did you like them? I went for ABR there Mass Eye and Ear and they

were pretty coldish. Oh well let me know what you think. Lori

[Guest guest]

In a message dated 9/9/99 12:28:09 PM Eastern Daylight Time,

tonya14@... writes:

>

>

Hi Sharon, remember us? The McCarthys??We met you at Cue Camp NY back in

'98!!

How are things going for you?

We have recently relocated to Colorado, from NY and love it here. Would love

to hear all your news,

Orla

[Guest guest]

LCorc16@... wrote:

> From: LCorc16@...

>

> In a message dated 9/8/99 11:16:26 PM Eastern Daylight Time,

> tonya14@... writes:

>

> << My daughter also has a progressive loss from CMV but when we were at

> Boston Childrens last year they also identified an autoimmune problem. >>

> Do you know what and how they identified it? I am just curious. I am at UMass

> Medical Center in Worcester. I asked about info at Mass Eye and Ear and have

> received some info but I thought if they (her current ENT) wanted to put her

> on prednisone then I would get a second opinion and try Mass Eye and Ear or

> Children's. Did you like them? I went for ABR there Mass Eye and Ear and they

> were pretty coldish. Oh well let me know what you think. Lori

>

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

[Guest guest]

In a message dated 9/9/99 8:20:41 PM Eastern Daylight Time, dehahn@...

writes:

<< Marilyn Nault

at Boston Children's is a gift from God. >>

Thanks for the name. Do you know if she into any certain type of research?

You have been a wealth of info and so has everyone else. Thanks Lori

[Guest guest]

At 10:15 AM 9/9/99 -0400, LCorc16@... wrote:

>From: LCorc16@...

>

>In a message dated 9/8/99 11:16:26 PM Eastern Daylight Time,

>tonya14@... writes:

>

><< My daughter also has a progressive loss from CMV but when we were at

>Boston Childrens last year they also identified an autoimmune problem. >>

>Do you know what and how they identified it? I am just curious. I am at UMass

>Medical Center in Worcester. I asked about info at Mass Eye and Ear and have

>received some info but I thought if they (her current ENT) wanted to put her

>on prednisone then I would get a second opinion and try Mass Eye and Ear or

>Children's. Did you like them? I went for ABR there Mass Eye and Ear and they

>were pretty coldish. Oh well let me know what you think. Lori

Mass Eye and Ear is a clinic, so you are made to feel like you are at one.

Very cold, very uncaring, and as a parent, an outsider. Things have gotten

somewhat better over the years. You will get a very good ABR. Marilyn Nault

at Boston Children's is a gift from God. You will get every bit as good a

test as at ME & E, and she's a joy to work with. Children's is the only place

my kids go for a consult.

Chris

<< Christofer deHahn..................Manager, EDA Systems and Test >>

<< Quantum Corporation...........Shrewsbury, Massachusetts, USA >>

[Guest guest]

At 09:11 PM 9/9/99 -0400, LCorc16@... wrote:

>From: LCorc16@...

>

>In a message dated 9/9/99 8:20:41 PM Eastern Daylight Time, dehahn@...

>writes:

>

><< Marilyn Nault

> at Boston Children's is a gift from God. >>

>Thanks for the name. Do you know if she into any certain type of research?

>You have been a wealth of info and so has everyone else. Thanks Lori

She's not a research audiologist that's in a lab environment, she's

clinical. She's also one of the leading advocates that fought for mandatory

hearing screening in MA. We've met several times at the State House.

Chris

<< Christofer deHahn..................Manager, EDA Systems and Test >>

<< Quantum Corporation...........Shrewsbury, Massachusetts, USA >>

[Guest guest]

OMac353@... wrote:

> From: OMac353@...

>

> In a message dated 9/9/99 12:28:09 PM Eastern Daylight Time,

> tonya14@... writes:

>

> >

> >

> Hi Sharon, remember us? The McCarthys??We met you at Cue Camp NY back in

> '98!!

>

> How are things going for you?

>

> We have recently relocated to Colorado, from NY and love it here. Would love

> to hear all your news,

>

> Orla

>

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