Re: Caught between worlds (formerly: experience with deaf culture)

[Guest guest]

In a message dated 1/3/2006 3:59:18 P.M. Eastern Standard Time,

stefanieac@... writes:

Three summers ago, our whole family went to Cued Speech camp for the first

time. Our first day there, within an hour of arriving, Ben turned to my

husband and said in amazement " Dad, everyone here wears hearing aids or an

implant! " He has asked to go back every year. This camp included deaf and

HOH people, some of whom used sign as their primary method of communication,

but who also could/wanted to communicate orally. I was caught by surprise at

how comfortable my son was at that camp. That tells me oodles about who he

is, regardless of how comfortable he seems in the hearing world

One of the things I am now looking into is finding a camp for Ian to go to

or work at over the coming summer. He's 15, old enough to work as a CIT at

some camps, and I've been wondering about finding one where the kids are D/HOH.

We've never done this before. He has always wanted to go to scout camp, and I

have to admit those are wonderful. He hikes, climbs, kayaks, mountain bikes

.... everything he loves. (The boy climbs like a monkey and was the only one to

make it up one route last summer -- I have a picture of him sitting 30-40

feet up on a ledge, waving at my hubby. I'm glad I wasn't watching him climb!).

He'll be going back to the high-adventure style one in Connecticut this

summer with his troop. And he'll also be going to " camp " on a sailboat in the

Florida Keys for a week. The following summer he'll be old enough for the real

" high adventure " scout camps around the country -- hopefully I'll be ready to

let him go. I can easily picture this boy in Montana. (sigh)

But he likes the idea of a week or so at a D/HOH camp as well. He knows ASL,

not cued speech or any other signing modality. I'm not sure how quickly he'd

pick up anther version of sign, since we're just had a year of ASL. ...

anyone have any websites for me to visit, places to look? We're in NY, so the

northeast quarter of the country is my target area, 8 hours from home gives me

a range from Maine to Ohio to Virginia.

Thanks -- Jill

[Guest guest]

In a message dated 1/3/2006 4:27:52 P.M. Eastern Standard Time,

Barbara.T.Mellert@... writes:

Be fun to get you guys up this way - we could finally meet!

Barbara

Our daughter may be going to a camp in Maine, so I was hoping to go there

via a visit with you guys. It's a specialized camp (marine biology) so we're not

sure if she qualifies yet ... there are entrance req's and we're still in

the process of admission.

Even so, the kids want us to schedule a family camping trip. It's been a

couple years since we've lived in a tent for a week or two and that's their

request for this coming summer. They loved the time we spent in Maine and

Vermont

.... so that's where I'm looking. Still, the thought of a sleeping bag for a

couple weeks ... suddenly I feel old and achy, LOL

Best -- Jill

[Guest guest]

I'd second what Jill says here. We live in a town of 8,000 - my kids

are the only two kids in their respective schools with hearing loss.

Especially when my guys were younger, I wished we lived closer to a

metro area to be able to take advantage of what they have to offer vis a

vis D/HOH folks.

Barbara

JillcWood@... wrote:

>

> I wish we had the kind of access to D/HOH things that people in real

> cities enjoy. We don't.

>

****************

Barbara Mellert, MPH

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall, HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

[Guest guest]

Just to chime in...

My son actually has a number of deaf/HOH friends, all of whom wear aids or

implants and all of whom are oral. He is, however, the only child in his

school who wears two aids (there is another boy with a unilateral loss, who

wears his aid inconsistently). He has many friends, is social and outgoing,

and seems to move effortlessly in his world. I KNOW there are things he

doesn't catch, and that he compensates amazingly.

Three summers ago, our whole family went to Cued Speech camp for the first

time. Our first day there, within an hour of arriving, Ben turned to my

husband and said in amazement " Dad, everyone here wears hearing aids or an

implant! " He has asked to go back every year. This camp included deaf and

HOH people, some of whom used sign as their primary method of communication,

but who also could/wanted to communicate orally. I was caught by surprise at

how comfortable my son was at that camp. That tells me oodles about who he

is, regardless of how comfortable he seems in the hearing world. He is not,

and never will be, hearing, which I am totally cool with; but I do need to

remember that. And it just makes me think that there are many sides to a

person, and I need to pay attention to that as well.

Stefanie

Mom to Ben, 7, severe/profound, and Isabella, 10, mild loss

on 1/3/06 3:24 PM, Barbara Mellert at Barbara.T.Mellert@... wrote:

> I'd second what Jill says here. We live in a town of 8,000 - my kids

> are the only two kids in their respective schools with hearing loss.

> Especially when my guys were younger, I wished we lived closer to a

> metro area to be able to take advantage of what they have to offer vis a

> vis D/HOH folks.

>

> Barbara

[Guest guest]

It's so interesting you say that, Stefanie. When Tom and I first talked

about the possibility of his getting an implant, the first thing he said

was " I have to talk with my friends about this. They know me as Tom,

their friend with hearing aids. " Isn't that interesting? (never mind

that all his friends are hearing and probably didn't have a clue about

an implant). If you'd asked me what I would have thought his reaction

would have been, it sure wouldn't have been that! And interestingly,

Tom (my former HOH child) much more identifies himself as being deaf

than Sam does. Sam just kind of goes with it - now and then he'll talk

about it. But it's very much part of Tom's identity and who Tom is.

Interesting, those boys of mine!

Barbara

Stefanie Cloutier wrote:

> Just to chime in...

>

> My son actually has a number of deaf/HOH friends, all of whom wear aids or

> implants and all of whom are oral. He is, however, the only child in his

> school who wears two aids (there is another boy with a unilateral

> loss, who

> wears his aid inconsistently). He has many friends, is social and

> outgoing,

> and seems to move effortlessly in his world. I KNOW there are things he

> doesn't catch, and that he compensates amazingly.

>

> Three summers ago, our whole family went to Cued Speech camp for the first

> time. Our first day there, within an hour of arriving, Ben turned to my

> husband and said in amazement " Dad, everyone here wears hearing aids or an

> implant! " He has asked to go back every year. This camp included deaf and

> HOH people, some of whom used sign as their primary method of

> communication,

> but who also could/wanted to communicate orally. I was caught by

> surprise at

> how comfortable my son was at that camp. That tells me oodles about who he

> is, regardless of how comfortable he seems in the hearing world. He is

> not,

> and never will be, hearing, which I am totally cool with; but I do need to

> remember that. And it just makes me think that there are many sides to a

> person, and I need to pay attention to that as well.

>

> Stefanie

> Mom to Ben, 7, severe/profound, and Isabella, 10, mild loss

>

[Guest guest]

Hi Jill - the Austine School in Vermont has camps in the summer. Their

website is here:

http://www.austine.pvt.k12.vt.us/

Be fun to get you guys up this way - we could finally meet!

Barbara

JillcWood@... wrote:

>

> In a message dated 1/3/2006 3:59:18 P.M. Eastern Standard Time,

> stefanieac@... writes:

>

> Three summers ago, our whole family went to Cued Speech camp for the

> first

> time. Our first day there, within an hour of arriving, Ben turned to my

> husband and said in amazement " Dad, everyone here wears hearing aids

> or an

> implant! " He has asked to go back every year. This camp included deaf and

> HOH people, some of whom used sign as their primary method of

> communication,

> but who also could/wanted to communicate orally. I was caught by

> surprise at

> how comfortable my son was at that camp. That tells me oodles about

> who he

> is, regardless of how comfortable he seems in the hearing world

>

>

>

>

> One of the things I am now looking into is finding a camp for Ian to

> go to

> or work at over the coming summer. He's 15, old enough to work as a

> CIT at

> some camps, and I've been wondering about finding one where the kids

> are D/HOH.

> We've never done this before. He has always wanted to go to scout

> camp, and I

> have to admit those are wonderful. He hikes, climbs, kayaks, mountain

> bikes

> ... everything he loves. (The boy climbs like a monkey and was the

> only one to

> make it up one route last summer -- I have a picture of him sitting

> 30-40

> feet up on a ledge, waving at my hubby. I'm glad I wasn't watching

> him climb!).

> He'll be going back to the high-adventure style one in Connecticut this

> summer with his troop. And he'll also be going to " camp " on a

> sailboat in the

> Florida Keys for a week. The following summer he'll be old enough for

> the real

> " high adventure " scout camps around the country -- hopefully I'll be

> ready to

> let him go. I can easily picture this boy in Montana. (sigh)

>

> But he likes the idea of a week or so at a D/HOH camp as well. He

> knows ASL,

> not cued speech or any other signing modality. I'm not sure how

> quickly he'd

> pick up anther version of sign, since we're just had a year of ASL. ...

> anyone have any websites for me to visit, places to look? We're in

> NY, so the

> northeast quarter of the country is my target area, 8 hours from

> home gives me

> a range from Maine to Ohio to Virginia.

>

> Thanks -- Jill

>

>

>

[Guest guest]

Hon, I can't imagine camping for one night - let alone two weeks! :-)

Barbara

JillcWood@... wrote:

>

> In a message dated 1/3/2006 4:27:52 P.M. Eastern Standard Time,

> Barbara.T.Mellert@... writes:

>

> Be fun to get you guys up this way - we could finally meet!

>

> Barbara

>

>

>

>

> Our daughter may be going to a camp in Maine, so I was hoping to go

> there

> via a visit with you guys. It's a specialized camp (marine biology) so

> we're not

> sure if she qualifies yet ... there are entrance req's and we're still in

> the process of admission.

>

> Even so, the kids want us to schedule a family camping trip. It's been a

> couple years since we've lived in a tent for a week or two and that's

> their

> request for this coming summer. They loved the time we spent in Maine

> and Vermont

> ... so that's where I'm looking. Still, the thought of a sleeping bag

> for a

> couple weeks ... suddenly I feel old and achy, LOL

>

> Best -- Jill

>

>

[Guest guest]

That really is interesting! and just goes to show we need to keep paying

attention

on 1/3/06 4:04 PM, Barbara Mellert at Barbara.T.Mellert@... wrote:

> It's so interesting you say that, Stefanie. When Tom and I first talked

> about the possibility of his getting an implant, the first thing he said

> was " I have to talk with my friends about this. They know me as Tom,

> their friend with hearing aids. " Isn't that interesting? (never mind

> that all his friends are hearing and probably didn't have a clue about

> an implant). If you'd asked me what I would have thought his reaction

> would have been, it sure wouldn't have been that! And interestingly,

> Tom (my former HOH child) much more identifies himself as being deaf

> than Sam does. Sam just kind of goes with it - now and then he'll talk

> about it. But it's very much part of Tom's identity and who Tom is.

>

> Interesting, those boys of mine!

>

> Barbara

>

[Guest guest]

That's so true - I would never have thought he'd think that in a million

years! Just goes to show we're all so different...

Nice article in A. G. Bell this month, by the way! It was good to put

your face (and Ben and Isabella's) since I feel like I know you guys so

well!

Barbara

Stefanie Cloutier wrote:

> That really is interesting! and just goes to show we need to keep paying

> attention

>

> on 1/3/06 4:04 PM, Barbara Mellert at Barbara.T.Mellert@...

> wrote:

>

> > It's so interesting you say that, Stefanie. When Tom and I first talked

> > about the possibility of his getting an implant, the first thing he said

> > was " I have to talk with my friends about this. They know me as Tom,

> > their friend with hearing aids. " Isn't that interesting? (never mind

> > that all his friends are hearing and probably didn't have a clue about

> > an implant). If you'd asked me what I would have thought his reaction

> > would have been, it sure wouldn't have been that! And interestingly,

> > Tom (my former HOH child) much more identifies himself as being deaf

> > than Sam does. Sam just kind of goes with it - now and then he'll talk

> > about it. But it's very much part of Tom's identity and who Tom is.

> >

> > Interesting, those boys of mine!

> >

> > Barbara

> >

>

>

[Guest guest]

Thanks, Barbara -- I was so happy they used the pictures!

And I have to say, whenever I quote something you say from this list, I say

" my friend, Barbara " , even though I've never actually met you!

on 1/3/06 6:45 PM, Barbara Mellert at Barbara.T.Mellert@... wrote:

> That's so true - I would never have thought he'd think that in a million

> years! Just goes to show we're all so different...

>

> Nice article in A. G. Bell this month, by the way! It was good to put

> your face (and Ben and Isabella's) since I feel like I know you guys so

> well!

>

> Barbara

>

> Stefanie Cloutier wrote:

>

>> That really is interesting! and just goes to show we need to keep paying

>> attention

>>

>> on 1/3/06 4:04 PM, Barbara Mellert at Barbara.T.Mellert@...

>> wrote:

>>

>>> It's so interesting you say that, Stefanie. When Tom and I first talked

>>> about the possibility of his getting an implant, the first thing he said

>>> was " I have to talk with my friends about this. They know me as Tom,

>>> their friend with hearing aids. " Isn't that interesting? (never mind

>>> that all his friends are hearing and probably didn't have a clue about

>>> an implant). If you'd asked me what I would have thought his reaction

>>> would have been, it sure wouldn't have been that! And interestingly,

>>> Tom (my former HOH child) much more identifies himself as being deaf

>>> than Sam does. Sam just kind of goes with it - now and then he'll talk

>>> about it. But it's very much part of Tom's identity and who Tom is.

>>>

>>> Interesting, those boys of mine!

>>>

>>> Barbara

>>>

>>

>>

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

> the intellectual property of the author and therefore subject to copyright

> restrictions.

>

[Guest guest]

Stefanie Cloutier wrote: <<That tells me oodles

about who he

is, regardless of how comfortable he seems in the hearing world. ... And it just

makes me think that there are many sides to a

person, and I need to pay attention to that as well.>>

Just jumping in too ... Emmett turned 4 today and we're only dealing with the

hearing loss issue for little more than a year and a half, but I do feel caught

in the middle. Emmett loves to see other children who wear aids. He likes

meeting adults, but the kids make a huge difference for him. He's not alone when

he sees other kids with aids. At home, in our town and just about everywhere we

go, he is the only little person he knows wearing an aid.

I've always felt it important to have him meet peers so he wouldn't feel

isolated, but that really hits home for me when he's so excited and telling me

that there are other children just like him wearing aids. It seems to help his

sister feel connected to something bigger than us as well. There is a whole

world of D/d/HOH individuals out there and he is a part of that community. There

are aspects of Emmett's life that we, his typical hearing family, will just

never completely understand. That hits home when I see him lost in the

conversation at dinner, with only 4 of us around the table and we're his family

so we know he has a hard time keeping up.

Just another bit of my 2 cents ...

I enjoyed your article in Volta Voices this month, Stefanie. It was very well

written.

Johanna

---------------------------------

Yahoo! Photos

Ring in the New Year with Photo Calendars. Add photos, events, holidays,

whatever.

[Guest guest]

In a message dated 1/3/2006 2:23:40 P.M. Central Standard Time,

JillcWood@... writes:

We'd have more experiences good and bad, I'd love to have real living

examples of people who play down their HOH status the way our son does,

because it

really does become just part of a life. But this really isn't a myth or an

exaggeration made by uninformed people. It is simply our life.

Jill,

You pretty much described my life growing up. I didn't fit in either

" world " and because lipreading in one-on-one situations gave me 90% or greater

understanding with conversations, people often didn't realize that it couldn't

apply to every situation. I hated pep rallys and assemblies at school because

I couldn't follow what was being said. I remember countless movies with

friends in junior high and high school, where I would sit and imagine the

conversation going on the screen. I couldn't use the phone, so all of my dates

or

any arrangements with friends had to wait until my father came home from work

so he could make a phone call for me. I played down my hearing loss so well

that a group of guys that I barefooted (waterskiing on bare feet) with had no

clue until one day we were waiting in the water for the boat to circle

around and they were trying to talk to me. Being blind as a bat without my

glasses, I had no way to lipread them. Later, one of the guys told my best

friend,

" I had no clue was that deaf! "

My heart goes out to you, because it seems like you really " get " your son

and what he is going through. I know my mom felt the same way, but she also

felt like we just had to make the best of the situation we were in.

Putz

Illinois Families for Hands & Voices

_www.handsandvoices.org_ (http://www.handsandvoices.org/)

_www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

Email: support@...

[Guest guest]

In a message dated 1/3/2006 2:23:40 P.M. Central Standard Time,

JillcWood@... writes:

We'd have more experiences good and bad, I'd love to have real living

examples of people who play down their HOH status the way our son does,

because it

really does become just part of a life. But this really isn't a myth or an

exaggeration made by uninformed people. It is simply our life.

Jill,

You pretty much described my life growing up. I didn't fit in either

" world " and because lipreading in one-on-one situations gave me 90% or greater

understanding with conversations, people often didn't realize that it couldn't

apply to every situation. I hated pep rallys and assemblies at school because

I couldn't follow what was being said. I remember countless movies with

friends in junior high and high school, where I would sit and imagine the

conversation going on the screen. I couldn't use the phone, so all of my dates

or

any arrangements with friends had to wait until my father came home from work

so he could make a phone call for me. I played down my hearing loss so well

that a group of guys that I barefooted (waterskiing on bare feet) with had no

clue until one day we were waiting in the water for the boat to circle

around and they were trying to talk to me. Being blind as a bat without my

glasses, I had no way to lipread them. Later, one of the guys told my best

friend,

" I had no clue was that deaf! "

My heart goes out to you, because it seems like you really " get " your son

and what he is going through. I know my mom felt the same way, but she also

felt like we just had to make the best of the situation we were in.

Putz

Illinois Families for Hands & Voices

_www.handsandvoices.org_ (http://www.handsandvoices.org/)

_www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

Email: support@...

[Guest guest]

My girls are still young (10 and almost 5) but are much the same as

your son. My oldest has a moderate-severe loss and the younger

daughter has a mild-moderate loss. Both are oral. Each knows some

sign language - mainly so we can talk at the pool or across large

areas. Both seem to be doing " too well " (quote from school staff

member) for their loss and many don't know they wear aids. Even ppl

who have known them for years.

the Diagnostician (grr) at school told me that my daughters

are " enigmas " because the 4th grader is in Gifted/Talented class and

the (then 3 yo)other probably should be. (although they wouldn't

start one for her at that age... lol)

I can see them struggle in large groups and often they turn their

aids off or ask if they can take them out or skip something. It

breaks my heart when that happens. My 4th grader bravely joined

choir this year. The teacher wouldn't send home sheet music for me

to work with her, so she only had the words. She did her best with

that and i am proud of her, but i don't think the teacher or other

kids have a clue how much she worked to do that.

There are a few other kids at the school with hearing aids, but we

haven't been able to pair up with them. The school won't help in

that arena at all. guess they aren't allowed to.

I am worried about my younger daughter now though. She has had a

teacher come once a week to work with her ever since she was 4mos

old, and is doing wonderfully! She still has a lot of problems with

some things, but her speech is fairly good and she is soooo smart.

We have an ARD the end of this month for next school year. I am

hoping against all hope that they will continue with her itinerant

teacher and maybe add in speech. Last year i was told she is " too

smart and doing too well " to be in speech or PPCD. She is messing

up mostly on backing sounds and on f, s, th, sh, p, ch, v, z --

all of which fall in her hearing loss area, but the diagnostician

says she shouldn't necessarily have all of those til she is 6 or 7

so speech wouldn't help yet. (did i say grrrrr yet?)

I have neighbors tell me that the girls don't need the aids, that

they hear better now than they did when they were younger, that they

are just pretending to not hear, that i am paranoid, etc. The girls

don't dwell on their loss much which is good. But sometimes i wish

they would advocate for themselves better. the little one's friend

introduced her to an adult friend of their family and told him " S___

has hearing problems " The mom turned red. My daughter didn't

hear. I was happy that a 5 yo friend would make sure an adult was

aware!

guess i am just rambling now, but it is in a way good to know that

we aren't the only ones out there!

Kellie

mom to daughter 10 yrs HOH, son 8.5 yrs glasses and daugher 5 yrs

(almost) HOH