Re: Welcome to Listen-Up@onelist.com

[Guest guest]

Hi my name is Doris,

I have eleven year old son who is hearing impaired. We have made many

choices for him and not one of them was made easily. I have cried many tears

over what if it's the wrong decision? I'm sure many or all of you have felt

the same way.

I am looking for people that know what it feels like to parent an H.I.

Child. For many years it has felt like we were alone. Yes, people try to

understand but they can't (not really).

I'm not trying to sound like a whiner, sorry.

Doris

[Guest guest]

Welcome to the list Doris. You will find a wealth of information and support

on this list!

Elaine

(Mom to Jake, 5 yrs old, Clarion S 2/99)

[Guest guest]

Hi Doris,

Welcome to the list. I have an 11 month old son, who is HOH, his hearing

loss was detected at birth, and I too thought was the only child in the

entire state of Connecticut with a hearing loss. It is awful lonely

feeling, but I have learned in the short 11 months of 's life, he is not

the only one, and I am not the only parent having these feelings.

I must say this great online support group has been a life line for me, as

well as meeting parents of other kids with hearing impairements, it is great

to be able to tell someone something and they to know EXACTLY what you are

feeling.

You have found a great bunch of parents here who will be there for you thru

the good times and the bad times, you just need to reach out to them!!!!

Debbie

's Mom

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[Guest guest]

> I have eleven year old son who is hearing impaired. We have made many

> choices for him and not one of them was made easily. I have cried many

tears

> over what if it's the wrong decision? I'm sure many or all of you have

felt

> the same way.

Welcome Doris, we're glad to have you with us! I think it's normal to wonder

about our decisions. You mentioned to me in your subscription request that

your son was having a tough time in school. I can't help but wonder if the

school is providing your son with the support and services he needs. (This

comes from lots of personal experience in this area.)

> I am looking for people that know what it feels like to parent an H.I.

> Child. For many years it has felt like we were alone. Yes, people try to

> understand but they can't (not really).

That's one of the reasons this group is restricted to parents only. EVERYONE

on this list knows what it's like. I have often thought that the

professionals that serve my son can't really know how I feel, or just how

much goes into making each of the decisions we parents have to make. I have

to share something with everyone that I just found out. Our son's therapist,

who I really like, has always seemed very understanding of the decisions

I've had to make. She's been one of the few who makes sure I have the info I

need, and then steps back and allows me to make the decision instead of

trying to influence that decison. I just found out last week that one of her

sisters in blind. While this doesn't give her the insight into what it's

like to be the parent of a HI child, she does know how much parents put into

making these decisions, and allows them the freedom to make them.

> I'm not trying to sound like a whiner, sorry.

Never be sorry for how you feel or for sharing with us. This is one place

where I hope everyone feels free enough to vent their feelings and

frustrations. It's a healthy thing to do, and you'll often be surprised at

how many of us feel the same things.

I am the parents of a 12 year old who recently got a cochlear implant. For

the first 6 years of school, things were very frustrating for us both

because his school system didn't give him what he needed. I think part of

that was because they had never had an oral child in their school system

before so they didn't really know what to do with him. While even the

director of the school for the deaf in our town admitted their school had

nothing to offer for our son because he was doing better than kids much

older than him in their school were, they wouldn't provide him with anything

in the mainstream setting, except for 1 hour of speech a week. In the end,

it was easier for us to convince the Air Force to relocate us to an area

with a school that specialized in oral deaf kids than to convince the public

school system to provide appropriate support services for our son.

Once again, Welcome to you, and to the others who have recently joined us.

Kay

[Guest guest]

Tahna,

Thanks for the welcome.

A long time ago I started a note book of all the decisions I made and how

I came to make those decisions. This way when Adam gets older and asks me why

I did what I did I can just give him the book. It has everything in it as it

happened, and I mention the tears as well. I just want him to understand that

NO decision was made lightly. It also helps me.

Doris

[Guest guest]

Dixie,

Thank you for the welcome. When Adam was 4 he was in a school for all

handicaps. He began to take on some of their behaviors. We had a real hard

time getting him out of that school, everytime we tried to pull him out the

teacher would pull something (like reporting us for child abuse NOT FOUNDED).

That was in CA. we managed after many phone calls to get a transfer to

Norfolk, VA. were they have a larger hearing impaired population. The area we

lived in was a farming comunity.Nothing there but cotton, corn, nuts, and

fruit. At least here he is challenged I guess. He is so far behind in school.

He refuses to do the homework saying he doesn't understand. I think he

doesn't want to, yes I know the work is very hard but he should at least try.

We battle this every day. What has worked for all of you?

Doris

[Guest guest]

Hi Doris,

Welcome, my name is Tahna and I have a 5 year old daughter, Nellie, who is

hearing impaired and was recently implanted last Feb. 99. I too have shed many

many

tears... You are not alone any more......I'm glad you are connected with us,

we've all been there. And you know when we say that, its TRUE...... I've

always hated

making decisions... I wish someone else would make them for me that way if THEY

make a mistake, I can kick their butts and stop kicking MINE...... But we try

to obtain

the knowledge to make the best decision for our child... It's not an easy road

to hoe. Again welcome and email us or me again.... Tahna

DSHIHTZU@... wrote:

> From: DSHIHTZU@...

>

> Hi my name is Doris,

> I have eleven year old son who is hearing impaired. We have made many

> choices for him and not one of them was made easily. I have cried many tears

> over what if it's the wrong decision? I'm sure many or all of you have felt

> the same way.

> I am looking for people that know what it feels like to parent an H.I.

> Child. For many years it has felt like we were alone. Yes, people try to

> understand but they can't (not really).

> I'm not trying to sound like a whiner, sorry.

> Doris

>

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

[Guest guest]

Welcome, Doris!

I have a 4-1/2 year old son who is deaf (R severe, L severe-to-profound).

We live in a rural area of Hawaii. He attends preschool in a local

elementary school. It is a Total Communication program with students from

age three to fifth grade in the same class. (It's a large range, but only

amounts to seven kids.) I am always worried about whether we are making the

right decisions for , even though we really don't have many choices

where we live. I look forward to hearing about what you've been through!

Dixie

[Guest guest]

Hi Doris,

I started a Journal a long time ago, when Nellie was first diagnosed. I

used it for my " Dear Diary " sometimes too, to write down my feelings was good

for me, since

I felt so alone. I lived in rural Wyoming, yea, the Boonies.... It was awful, I

was so alone and felt Nellie was the only one with a hearing loss and I was to

blame.

That was 3 long years ago and its better but, I still have my times I second

guess my decisions. I wish you peace in your heart that you are doing the best

for your

child. I know its not easy, my husband is a truck driver so I make a lot of

decisions by myself and I still kno't like it.... But for now, until we get

settled and know

what we are doing, I'll do it. I am going to school to get my Masters degree in

deaf education and I'll be doing student teaching this fall possible in Utah..

Is

anybody from Utah???? Thats why things are up in the air for us here.

Sincerely Tahna and Nellie

DSHIHTZU@... wrote:

> From: DSHIHTZU@...

>

> Tahna,

> Thanks for the welcome.

> A long time ago I started a note book of all the decisions I made and how

> I came to make those decisions. This way when Adam gets older and asks me why

> I did what I did I can just give him the book. It has everything in it as it

> happened, and I mention the tears as well. I just want him to understand that

> NO decision was made lightly. It also helps me.

> Doris

>

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

[Guest guest]

> possible in Utah.. Is

> anybody from Utah????

Well, not that you mention it, Dave and I are originally from Utah, but we

haven't lived there since before JD was born. I am a bit upset with the Utah

Schools for the Deaf though because they have yet to pay me the $370 they

owe me from the first of April! They are the only ones who have ever given

me trouble.

Kay

[Guest guest]

Great...... Why do they owe you money Kay?? Have you had a chance to

investigate their programs??? How long ago did you live there? I was hoping

this would be a

good oportunity for Nellie??? Sorry about all the questions, especially about

the Money. Never mind that one....... Tahna

Dave & Kay wrote:

>

>

> > possible in Utah.. Is

> > anybody from Utah????

>

> Well, not that you mention it, Dave and I are originally from Utah, but we

> haven't lived there since before JD was born. I am a bit upset with the Utah

> Schools for the Deaf though because they have yet to pay me the $370 they

> owe me from the first of April! They are the only ones who have ever given

> me trouble.

>

> Kay

>

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

[Guest guest]

> Great...... Why do they owe you money Kay??

They ordered a copy of my program.

> Have you had a chance to investigate their programs???

No I haven't. Whenever we've been back home we've had too many other things

to do than to run to the Granite School District to check it out (they

donate the space for the school for the deaf in Salt Lake).

> How long ago did you live there?

The hubby and I were both born there. When I was pregnant with JD (he's

almost 13 now) he went from Air Force Reserves to Active Duty.

> I was hoping this would be a

> good oportunity for Nellie???

I wish I had more info I could give you. All I can really say is that there

is no AV therapists there, but the SLP's at Primary Children's are supposed

to be very good. But, not having ever met them or seen them in action, one

person's idea of very good could be quite different from mine (and yours).

Also, a few years ago, AVI held their conference at Snowbird, Utah so I

would hope there were some local therapists there who attended and have

learned to apply the principles.

I can tell you that while we were there, the public education really sucked.

My baby brother got within 2 weeks of graduating high school when he dropped

out, and he could barely read - I mean he read only enough to understand

road signs. He has since taught himself how to read, gotten his GED, and

taken some classes at Westminster. Almost all of both of our families still

lives there.

That's about all I can give you on that though. Sorry it wasn't more.

Kay

[Guest guest]

Thanks Kay,

It doesn't sound real good... I'll make sure I do some checking before a

final decision is made.... Tahna

Dave & Kay wrote:

>

>

> > Great...... Why do they owe you money Kay??

>

> They ordered a copy of my program.

>

> > Have you had a chance to investigate their programs???

>

> No I haven't. Whenever we've been back home we've had too many other things

> to do than to run to the Granite School District to check it out (they

> donate the space for the school for the deaf in Salt Lake).

>

> > How long ago did you live there?

>

> The hubby and I were both born there. When I was pregnant with JD (he's

> almost 13 now) he went from Air Force Reserves to Active Duty.

>

> > I was hoping this would be a

> > good oportunity for Nellie???

>

> I wish I had more info I could give you. All I can really say is that there

> is no AV therapists there, but the SLP's at Primary Children's are supposed

> to be very good. But, not having ever met them or seen them in action, one

> person's idea of very good could be quite different from mine (and yours).

> Also, a few years ago, AVI held their conference at Snowbird, Utah so I

> would hope there were some local therapists there who attended and have

> learned to apply the principles.

>

> I can tell you that while we were there, the public education really sucked.

> My baby brother got within 2 weeks of graduating high school when he dropped

> out, and he could barely read - I mean he read only enough to understand

> road signs. He has since taught himself how to read, gotten his GED, and

> taken some classes at Westminster. Almost all of both of our families still

> lives there.

>

> That's about all I can give you on that though. Sorry it wasn't more.

>

> Kay

>

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

[Guest guest]

In a message dated 7/25/99 7:24:17 PM Pacific Daylight Time, DSHIHTZU@...

writes:

<< Hi my name is Doris,

I have eleven year old son who is hearing impaired. We have made many

choices for him and not one of them was made easily. I have cried many tears

over what if it's the wrong decision? I'm sure many or all of you have felt

the same way.

I am looking for people that know what it feels like to parent an H.I.

Child. For many years it has felt like we were alone. Yes, people try to

understand but they can't (not really).

I'm not trying to sound like a whiner, sorry.

Doris

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

[Guest guest]

In a message dated 7/26/99 12:11:39 PM Pacific Daylight Time,

accounts@... writes:

<< We live in a rural area of Hawaii. >>

Hey Dixie,

I lived in Hawaii for 2 yrs. Beautiful place but expensive to live there.

Which island do u live on?

Terry

[Guest guest]

In a message dated 7/26/99 3:37:27 PM Pacific Daylight Time, DSHIHTZU@...

writes:

<< o get a transfer to

Norfolk, VA. were they have a larger hearing impaired population. >>

Doris,

Have you become a member of TAHIC? Its a great organization-Iwas a member

until two years ago (now I'm too far away) Its a great parent support group

with educators and interpreters and audiologists also involved.

Terry

[Guest guest]

In a message dated 7/30/99 10:38:43 AM Pacific Daylight Time,

accounts@... writes:

<< Hi Terry,

We live on Hawaii, the Big Island, about 15 miles north of Hilo. Where were

you? >>

I lived on Oahu. I was stationed there while I was in the Navy. After

discharge, I stayed there for one year. I lived in Wailua (Turtle Bay side)

Is there a school for the deaf on the big island or do they have to go to

Oahu? How do u feel the education is there?

Terry

[Guest guest]

Hi Terry,

We live on Hawaii, the Big Island, about 15 miles north of Hilo. Where were

you?

Dixie

>From: Theathdi@...

>

>In a message dated 7/26/99 12:11:39 PM Pacific Daylight Time,

>accounts@... writes:

>

><< We live in a rural area of Hawaii. >>

>Hey Dixie,

>I lived in Hawaii for 2 yrs. Beautiful place but expensive to live there.

>Which island do u live on?

>Terry

>

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

[Guest guest]

Hello Everyone,

My name is Eleanor and I am the single parent of who is nine

years old and HOH, ADHD and has mild CP. Her severe hearing loss was not

diagnosed until she was six. Obviously, we are not with those doctors

anymore. For the last few years, she has had a moderate loss in one ear and

a mild loss in the other. She recently had a tympanoplasty that did not

take but her hearing did improve a little. After she first got her hearing

we went oral but the oral program did not work out for us. She does not

speak so we are in the process of learning sign language. Notice I say " in

the process " . We know fingerspell and over two hundred signs now but we are

very slow and most signers make us cross-eyed.

We are going through some of the standard deaf/hh issues of IEP problems,

social isolation and low self-esteem. The last half year has been especially

difficult because she had the tympanoplasty, broke her foot and was in a

cast for six weeks and then had to have it operated on and was in a cast for

another six weeks and, then, just as she was back on her feet, a disc swing

broke and sent her into a tree and she fractured a vertebrae in her back and

hit the side of her face which worsened her problems with hearing loss and

pain. She just got out of the body brace two days ago and is a much happier

child. I have taken her to doctor after doctor for the pain where her face

and head hit but no answers. The dentist is in a couple of days but visually

her teeth look fine and I am not expecting that to be the answer. If anyone

has any ideas I would appreciate hearing them.

As far as schooling goes, I have taught her almost everything she knows

since the school kept telling me that she could not be taught. It is amazing

that I, a person with a business and not an education background can teach

her but the school cannot. I have considered homeschooling and moving to

another school district. Even though I love being with , I have to

go back to work soon and homeschooling is not a viable option.

My philosophy oral vs. sign vs. CI is that every child is different and has

different needs.

Since I know a few of you already from another list, I have heard that

this is a nice place to be and I am looking forward to being on this list.

Eleanor

's Mom

[Guest guest]

Hi,

My name is . I have a almost 4 yrs old(2 weeks!) She is severe to

profoundly hearing impaired. She wears two hearing aids. We are looking

into an FM system for her. She will be starting pre-school next week. She

was diagnosed at 16 months after we had some questioning when my husband came

up behind her with a pan and she didn't flinch at 14 months. She had been

also in therapy for PT and OT due to low muscle tone. The doctors have not

been able to give a reason for her hearing loss. She was born with normal

hearing according to her ABR given at birth. The mode of communication that

we chose to use with her after prayer was Auditory Verbal Therapy. She still

has a good amount of residual hearing in her left ear, so she is not a

candidate for an implant. I stay at home with her. I also have 2 other

children an 11 1/2 yr old girl, and a 91/2 yr old boy. Well I guess I have

rambled on long enough. Hope to get to know all of you.

[Guest guest]

Hi and welcome to the list. I am sure your Dr.s probably tested her

for it, but i sounds like typical CMV (cytomegalovirus) ramifications. My

lightbulb went

off when you said poor muscle tone and hearing loss, both are common side

effects of CMV (among others). The list is very informative--so many experts

here! And so

many full of encouragement and empathy. Deb Irwin

CMSteph98@... wrote:

> From: CMSteph98@...

>

> Hi,

>

> My name is . I have a almost 4 yrs old(2 weeks!) She is severe to

> profoundly hearing impaired. She wears two hearing aids. We are looking

> into an FM system for her. She will be starting pre-school next week. She

> was diagnosed at 16 months after we had some questioning when my husband came

> up behind her with a pan and she didn't flinch at 14 months. She had been

> also in therapy for PT and OT due to low muscle tone. The doctors have not

> been able to give a reason for her hearing loss. She was born with normal

> hearing according to her ABR given at birth. The mode of communication that

> we chose to use with her after prayer was Auditory Verbal Therapy. She still

> has a good amount of residual hearing in her left ear, so she is not a

> candidate for an implant. I stay at home with her. I also have 2 other

> children an 11 1/2 yr old girl, and a 91/2 yr old boy. Well I guess I have

> rambled on long enough. Hope to get to know all of you.

>

>

>

> > 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]

Welcome Tonia!

I live on the Big Island of Hawaii, and have three sons. The two oldest are

teenagers, hearing. The youngest is 4-1/2, severely deaf, diagnosed at age

2. He is doing well with his hearing aids, and in addition he attends a

Total Communication class where he also learns signing. But he is a great

kid, lots of personality, and I fully expect him to be president someday

because he is so full of self-confidence!

Good luck as you start on this journey with your son. How is everything

coming along so far? Are you getting the information and help you need from

your local school?

Dixie

Re: Welcome to Listen-Uponelist

>

>

>Hello,

>My name is Tonia Mock, married to Rick, and a few weeks ago our family

found

>out that my son Jaron has sensorineural hearing loss, moderate, and will

>need to get hearing aids and possibly speech/language therapy. He's six and

>has a brother who is 10 and sister age 8. Thank you.

>Tonia Mock

>mox@...

>Hammond, OR

>Let it all go, fear, doubt, disbelief, free your mind. -Morpheus, The

Matrix

>http://www.onelist.com/subscribe/DeschoolingAdults

>

>

>

>>

>> The address for posting messages to the list is Listen-Uponelist .

>Please

>> send a brief (or not so brief) introduction to the list so that we can

all

>get

>> to know you.

>>

>>

>> Kay

>> listenup@...

>

>>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]

Welcome Tonia!

I live on the Big Island of Hawaii, and have three sons. The two oldest are

teenagers, hearing. The youngest is 4-1/2, severely deaf, diagnosed at age

2. He is doing well with his hearing aids, and in addition he attends a

Total Communication class where he also learns signing. But he is a great

kid, lots of personality, and I fully expect him to be president someday

because he is so full of self-confidence!

Good luck as you start on this journey with your son. How is everything

coming along so far? Are you getting the information and help you need from

your local school?

Dixie

Re: Welcome to Listen-Uponelist

>

>

>Hello,

>My name is Tonia Mock, married to Rick, and a few weeks ago our family

found

>out that my son Jaron has sensorineural hearing loss, moderate, and will

>need to get hearing aids and possibly speech/language therapy. He's six and

>has a brother who is 10 and sister age 8. Thank you.

>Tonia Mock

>mox@...

>Hammond, OR

>Let it all go, fear, doubt, disbelief, free your mind. -Morpheus, The

Matrix

>http://www.onelist.com/subscribe/DeschoolingAdults

>

>

>

>>

>> The address for posting messages to the list is Listen-Uponelist .

>Please

>> send a brief (or not so brief) introduction to the list so that we can

all

>get

>> to know you.

>>

>>

>> Kay

>> listenup@...

>

>>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]

Hello,

My name is Tonia Mock, married to Rick, and a few weeks ago our family found

out that my son Jaron has sensorineural hearing loss, moderate, and will

need to get hearing aids and possibly speech/language therapy. He's six and

has a brother who is 10 and sister age 8. Thank you.

Tonia Mock

mox@...

Hammond, OR

Let it all go, fear, doubt, disbelief, free your mind. -Morpheus, The Matrix

http://www.onelist.com/subscribe/DeschoolingAdults

>

> The address for posting messages to the list is Listen-Uponelist .

Please

> send a brief (or not so brief) introduction to the list so that we can all

get

> to know you.

>

>

> Kay

> listenup@...

[Guest guest]

>

>Hello,

>My name is Tonia Mock, married to Rick, and a few weeks ago our family

found

>out that my son Jaron has sensorineural hearing loss, moderate, and will

>need to get hearing aids and possibly speech/language therapy. He's six and

>has a brother who is 10 and sister age 8. Thank you.

My daughter was also identified late. She was not identified as having a

moderate to severe loss until she was almost five. You say possibly need

speech therapy. What is his speech like?

Barb