New to this group

[Guest guest]

Hiya Jini - *wavs* - I just love your name!

I'm Autumn, 36, in the deep south, 5'7 " , and need to lose about 80 lbs.

Your ideas sound good and healthy. There are a lot of awesome people here

with great information, ideas, support, and encouragment. Looking foward

to " posting " with you.

Autumn

On Mon, 18 Aug 2003 23:26:52 -0700 (PDT) Jini Tyler

writes:

Hi all,

I just joined this group. I am 46 years old, 5' 6 " , 172 lbs. Have a

grown up daughter, in the process of separation and would like to do

something good for myself so I decided to join a weight loss group. My

goal is to lose 25 lbs. What I have in mind is to eat smaller portions,

cut fat and sugar, and not to eat after 7:30 pm. Looking forward to

reading your emails.

Jini

[Guest guest]

Hi Everyone!!

I am new to this group, so I figured I'd introduce myself. I am 28

y.o, from land, and just had a beautiful baby girl three months

ago. I would like to get back into a healthy lifestyle, and follow

WW to accomplish my goals. Since my life tends to be hectic with

the new baby, I love simplifying things. Does anyone know whether

there is any point calculator/journal/point tracker program for

Pocket PC? ( I have an Compaq ipaq).

Thanks for the help, and I'm looking forward to being part of this

community!

suniaa

[Guest guest]

Hi! Barbara,

Thank you for your email. Hussein has no friends with implants or hearing

aids. He is the only one in his school with hearing impairment. Maybe I need

to look for kids of his age who would interact with him on MSN. They could

discuss their feelings then.

There is only one hospital which does cochlear implants in Sri Lanka and

they just started 6 months ago. Hussein was the first to get one in this

country. We traveled to Sydney for his first implant.

I tried the teen CI group that does not seem very active.

Cheers

Jeedu

Re: new to this group

Hi Jeedu - welcome! I have two boys with hearing loss. Sam is 11 and wears

two

hearing aids; Tom is 13 and was recently implanted (2-1/2 months ago). Tom

continues to wear his hearing aid on his other (non-implanted) ear. Tom has

the

Freedom also and is really liking it but made the same comment about how it

initially sounded. he told me that everyone he hears sounds like they're

going

through puberty! I laughed and told him that everyone he knows IS going

through

puberty! He's been activated for about 1-1/2 months.

Does Hussein have friends around his age with implants or hearing aids? We

found that helped tom probably more than anything - there's a young man

who's 16

who lives close to us and was implanted about a year before Tom. It was

great

to be able to ask him questions, etc.

Barbara

--- You wrote:

Hi! My name is Jeedu. I am the mother of Hussein who is 15 now. He was born

profound deaf used hearing aids till he was 7 and then had the N24 in 1997.

Last December he had a knock on the implanted side of his head the internal

device failed. We live in Sri Lanka where cochlear implant surgery is very

new so we had to go to Singapore for explanting and re-implanting. He was

implanted with the freedom and switched-on on 4th January. He hated the

sound from the freedom initially and said I sounded like a squeaky mouse.

Thank god he is getting use to it now.

Since we came back from Singapore and he started school he has been feeling

very lonely and sad. Says his friends are not talking to him anymore and no

one even asked how he was doing after surgery and switch-on.

Has any of your kids gone through a similar experience. I don't know how to

deal with his emotional feelings right now.

--- end of quote ---

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]

In a message dated 4/12/2006 2:42:19 A.M. Eastern Daylight Time,

kristie_462@... writes:

Then I went out of town so I am just now giving

my introduction. I am not sure if I am in the right place. It seems a

lot of you live on the East coast. I am from California, but I now

live in Salem Oregon, which I absolutely love. If it wasn't for family

I would live on the East coast because the services seem like they are

so much better.

Kristie,

You're in the right place. We have members from everywhere in the US, even a

few from overseas. So, don't be put off by where we are.

For us, it doesn't matter where we are. It's not like we're close enough so

see anyone on this list. Well, that's not true, one person out of several

hundred turns out to like relative close to me. But we found each other through

this list. Some people get to meet at conferences and whatnot, but that's not

the norm. Many of us joined this list in order to connect with other parents

who are having similar lives, similar issues, and to talk with people who

truly " get it. "

I'm Jill, mom of two. Or son is D/HOH, 15½ and a sophomore in our local high

school. He has a progressive loss currently in the moderate range, he's

aided in both ears and is pretty much your average teenage boy (who went bowling

last night with friends -- and his sister). Our daughter is 12 and hearing.

We didn't learn about Ian's loss until he was about 7, so ours is a story of

very late diagnosis and learning a lot on our own. This place, Listen-Up, is

a great place for information. The collection and variety of knowledge and

experience here is amazing. there are no stupid questions and everyone is very

supportive and patient.

So ask questions and join the threads when you have something to say.

Best -- Jill

[Guest guest]

Hi Kristie - welcome! I'm Barbara, mom to Tom, who is 13 with a

severe/profound loss and Sam, who is 11 with a profound loss. Tom

recently was implanted (Nov. 16 - activated Dec. 12) and is doing

extremely well with his implant. Sam will be having his surgery the

week before Emilie - on May 10. Both boys wore hearing aids prior to

being implanted - Tom still wears a hearing aid in his unimplanted ear.

I wondered if he would give up wearing the hearing aid but last week, he

had a cracked earmold and went to school with only his implant and

missed his hearing aid. He said that the hearing aid makes the implant

sound clearer and the implant makes the hearing aid sound louder - who

am I to argue?!

I'm glad you found us - there are no silly questions and all of us have

" been there done that " - you'll get lots of support here.

Barbara

play4krs wrote:

> Hi there,

> My name is Kristie I am the parent of a deaf 5 yr old. I joined a

> couple of weeks ago. Then I went out of town so I am just now giving

> my introduction. I am not sure if I am in the right place. It seems a

> lot of you live on the East coast. I am from California, but I now

> live in Salem Oregon, which I absolutely love. If it wasn't for family

> I would live on the East coast because the services seem like they are

> so much better.

> My daughter was born with a mild hearing loss that the newborn

> screening missed. I started asking questions when she was 1 yr. I new

> something wasn't right. I wasn't able to convince DRs till she was 18

> months, when I yelled her name. By the time she had her first

> timpanigram she was almost 2. He determined their was a loss and I

> should contact our local school district, which I did. She has been in

> Deaf/HOH pre-school ever since. I also took my first ASL class at this

> same time. We have had 2 ABR tests, the last on 9-11-03. It was 100

> decibals, which it where it has stayed. I was originally told that she

> didn't qualify for a CI. I never questioned that. I didn't know until

> a year ago that there is no way to tell for sure without an MRI. Then

> I started the process last October. She is going in for surgery on May

> 17th, 2006.

> Kristie mom to Emilie 5, profoundly Bilaturally deaf

>

>

>

>

>

>

> 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]

Hi Kristie,

We're in Eugene, and my 7-year-old is scheduled for surgery next week! She has

had a

progressive loss as well, diagnosed at 17 mos. Feel free to e-mail off-list if

you want to

chat, timandjanet (at) earthlink.net.

Janet

>

> Hi there,

> My name is Kristie I am the parent of a deaf 5 yr old. I joined a

> couple of weeks ago. Then I went out of town so I am just now giving

> my introduction. I am not sure if I am in the right place. It seems a

> lot of you live on the East coast. I am from California, but I now

> live in Salem Oregon, which I absolutely love. If it wasn't for family

> I would live on the East coast because the services seem like they are

> so much better.

> My daughter was born with a mild hearing loss that the newborn

> screening missed. I started asking questions when she was 1 yr. I new

> something wasn't right. I wasn't able to convince DRs till she was 18

> months, when I yelled her name. By the time she had her first

> timpanigram she was almost 2. He determined their was a loss and I

> should contact our local school district, which I did. She has been in

> Deaf/HOH pre-school ever since. I also took my first ASL class at this

> same time. We have had 2 ABR tests, the last on 9-11-03. It was 100

> decibals, which it where it has stayed. I was originally told that she

> didn't qualify for a CI. I never questioned that. I didn't know until

> a year ago that there is no way to tell for sure without an MRI. Then

> I started the process last October. She is going in for surgery on May

> 17th, 2006.

> Kristie mom to Emilie 5, profoundly Bilaturally deaf

>

[Guest guest]

Hi Robin,

Thanks for such a warm welcome! Can I ask if they have done a sedated ABR

test. We had 2 because the first one she was 2 and first they lost the test,

then after much complaining and nagging, they found it and got us the results.

They just wrote in a score. It was very unprofessional. The second one was when

she was 2 1/2 it was much more accurate and professionally typed like they're

supposed to be. In my opinion I would ask questions about your 2yr old. I don't

know how thing work where you live or in Oregon because my kids are older now.

In California at 3 yrs old if you want your child evaluated for a speech delay,

they by law can't deny you. I did this for my older children. It might be

something you might want to look into. So you have to wait until your 3 yr old

starts Kindergarten to get services for a mild HL? Sometimes schools make me

soo mad.

I have learned that I have to be very pushy and aggressive about what I want

in dealing with schools and DRs. regarding my daughter. That is very hard for

me.

Kristie

new to this group

Hi there,

My name is Kristie I am the parent of a deaf 5 yr old. I joined a

couple of weeks ago. Then I went out of town so I am just now giving

my introduction. I am not sure if I am in the right place. It seems a

lot of you live on the East coast. I am from California, but I now

live in Salem Oregon, which I absolutely love. If it wasn't for family

I would live on the East coast because the services seem like they are

so much better.

My daughter was born with a mild hearing loss that the newborn

screening missed. I started asking questions when she was 1 yr. I new

something wasn't right. I wasn't able to convince DRs till she was 18

months, when I yelled her name. By the time she had her first

timpanigram she was almost 2. He determined their was a loss and I

should contact our local school district, which I did. She has been in

Deaf/HOH pre-school ever since. I also took my first ASL class at this

same time. We have had 2 ABR tests, the last on 9-11-03. It was 100

decibals, which it where it has stayed. I was originally told that she

didn't qualify for a CI. I never questioned that. I didn't know until

a year ago that there is no way to tell for sure without an MRI. Then

I started the process last October. She is going in for surgery on May

17th, 2006.

Kristie mom to Emilie 5, profoundly Bilaturally deaf

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]

Hi Barbara,

What is your communication method? Have your son learned to speak from the

CI? That is pretty amazing that your son still wears the hearing aide.

Everything I have heard says it's very confusing for the brain to wear one with

a CI. I am also curious to see if Emilie will wear her other aid. It took her 2

days to wear the aides all the time when she got them at 2 1/2. That first set

she would take off as soon as she got home from school, like a pair of earrings.

They were for a moderate loss. They were turned up so loud that they were

irritating. The second set she got in Sep of 04. She is inseparable with them,

she would ask for them as soon as she awoke. Now she wants to sleep with them

in. She has a burning desire to hear, like no other kid I have ever seen. Can I

ask what kid of implants did you and are choosing and why? So far we have chosen

Advanced Bionics. All the kids I have met where we live have a Nucleus freedom.

Re: new to this group

Hi Kristie - welcome! I'm Barbara, mom to Tom, who is 13 with a

severe/profound loss and Sam, who is 11 with a profound loss. Tom

recently was implanted (Nov. 16 - activated Dec. 12) and is doing

extremely well with his implant. Sam will be having his surgery the

week before Emilie - on May 10. Both boys wore hearing aids prior to

being implanted - Tom still wears a hearing aid in his unimplanted ear.

I wondered if he would give up wearing the hearing aid but last week, he

had a cracked earmold and went to school with only his implant and

missed his hearing aid. He said that the hearing aid makes the implant

sound clearer and the implant makes the hearing aid sound louder - who

am I to argue?!

I'm glad you found us - there are no silly questions and all of us have

" been there done that " - you'll get lots of support here.

Barbara

play4krs wrote:

> Hi there,

> My name is Kristie I am the parent of a deaf 5 yr old. I joined a

> couple of weeks ago. Then I went out of town so I am just now giving

> my introduction. I am not sure if I am in the right place. It seems a

> lot of you live on the East coast. I am from California, but I now

> live in Salem Oregon, which I absolutely love. If it wasn't for family

> I would live on the East coast because the services seem like they are

> so much better.

> My daughter was born with a mild hearing loss that the newborn

> screening missed. I started asking questions when she was 1 yr. I new

> something wasn't right. I wasn't able to convince DRs till she was 18

> months, when I yelled her name. By the time she had her first

> timpanigram she was almost 2. He determined their was a loss and I

> should contact our local school district, which I did. She has been in

> Deaf/HOH pre-school ever since. I also took my first ASL class at this

> same time. We have had 2 ABR tests, the last on 9-11-03. It was 100

> decibals, which it where it has stayed. I was originally told that she

> didn't qualify for a CI. I never questioned that. I didn't know until

> a year ago that there is no way to tell for sure without an MRI. Then

> I started the process last October. She is going in for surgery on May

> 17th, 2006.

> Kristie mom to Emilie 5, profoundly Bilaturally deaf

>

>

>

>

>

>

> 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]

Hi Kristie - our boys both are oral, sort of by happenstance. We live

in northern New England (in western New Hampshire) and there just aren't

a ton of programs here for ASL, or for that matter for Auditory Verbal

Therapy so we kind of went with what we knew and that's worked for our

boys. Tom communicated orally long before he had his implant surgery

but the implant has enhanced it greatly. He can hear and say /s/ sounds

for the first time ever. His last word recognition score was 96% (it

was 4% just prior to his implant).

Tom's a bit of a different case in that he's 13 years old and had worn

hearing aids very successfully before he got his implant. He was aided

when he was 3-1/2 years old. The reason we (and he) went with the

implant is that he had a drop in hearing a year or so ago. We chose the

Nucleus Freedom, knowing that any of the three companies were good

decisions. We ended up going with Cochlear for a few reasons- I like

their " backwards compatible " policy where they work hard to make new

hardware compatible with older implants; I liked the water-resistance of

the Freedom, Tom liked the way it feels (he has a BTE) and I really do

like Cochlear's commitment to education. It was a hard decision - no

where is there an article in Consumer Reports about comparing implant

brands! We feel we made a good choice, Tom's happy with it and has done

extremely well with it - I imagine he would have done as well with

either of the other two companies also. Oh - Med-El ended up not being

a viable choice for us only because our implant surgeon had only done

one before. Again, I think Med-El is an excellent device but I just

didn't want our surgeon trying something new on my kid.

My boys are like your daughter with their hearing aids - they really do

enjoy them and love being able to hear. Tom told me that getting the

implant was the best thing he'd ever done - how's that for validation?

Of course now his little brother wants one! So Sam's on tap for his May

10.

Barbara

KRISTIE FORD wrote:

> Hi Barbara,

> What is your communication method? Have your son learned to speak from the

CI? That is pretty amazing that your son still wears the hearing aide.

Everything I have heard says it's very confusing for the brain to wear one with

a CI. I am also curious to see if Emilie will wear her other aid. It took her 2

days to wear the aides all the time when she got them at 2 1/2. That first set

she would take off as soon as she got home from school, like a pair of earrings.

They were for a moderate loss. They were turned up so loud that they were

irritating. The second set she got in Sep of 04. She is inseparable with them,

she would ask for them as soon as she awoke. Now she wants to sleep with them

in. She has a burning desire to hear, like no other kid I have ever seen. Can I

ask what kid of implants did you and are choosing and why? So far we have chosen

Advanced Bionics. All the kids I have met where we live have a Nucleus freedom.

> Re: new to this group

>

>

>

[Guest guest]

I'm so sorry that I'm behind in educating myself, but could someone explain, or

suggest a link that explains the differences between oral, auditory/verbal,

bilingual/bicultural methods of education/communication. I thought I had it

straight, but now I'm not so sure.

Thanks so much. Sorry for the 'elementary' question.

Darla.

________________________________

From: Listen-Up [mailto:Listen-Up ] On Behalf Of

KRISTIE FORD

Sent: Wednesday, April 12, 2006 12:12 PM

To: Listen-Up

Subject: Re: new to this group

Importance: Low

Hi Barbara,

What is your communication method? Have your son learned to speak from the

CI? That is pretty amazing that your son still wears the hearing aide.

Everything I have heard says it's very confusing for the brain to wear one with

a CI. I am also curious to see if Emilie will wear her other aid. It took her 2

days to wear the aides all the time when she got them at 2 1/2. That first set

she would take off as soon as she got home from school, like a pair of earrings.

They were for a moderate loss. They were turned up so loud that they were

irritating. The second set she got in Sep of 04. She is inseparable with them,

she would ask for them as soon as she awoke. Now she wants to sleep with them

in. She has a burning desire to hear, like no other kid I have ever seen. Can I

ask what kid of implants did you and are choosing and why? So far we have chosen

Advanced Bionics. All the kids I have met where we live have a Nucleus freedom.

Re: new to this group

Hi Kristie - welcome! I'm Barbara, mom to Tom, who is 13 with a

severe/profound loss and Sam, who is 11 with a profound loss. Tom

recently was implanted (Nov. 16 - activated Dec. 12) and is doing

extremely well with his implant. Sam will be having his surgery the

week before Emilie - on May 10. Both boys wore hearing aids prior to

being implanted - Tom still wears a hearing aid in his unimplanted ear.

I wondered if he would give up wearing the hearing aid but last week, he

had a cracked earmold and went to school with only his implant and

missed his hearing aid. He said that the hearing aid makes the implant

sound clearer and the implant makes the hearing aid sound louder - who

am I to argue?!

I'm glad you found us - there are no silly questions and all of us have

" been there done that " - you'll get lots of support here.

Barbara

play4krs wrote:

> Hi there,

> My name is Kristie I am the parent of a deaf 5 yr old. I joined a

> couple of weeks ago. Then I went out of town so I am just now giving

> my introduction. I am not sure if I am in the right place. It seems a

> lot of you live on the East coast. I am from California, but I now

> live in Salem Oregon, which I absolutely love. If it wasn't for family

> I would live on the East coast because the services seem like they are

> so much better.

> My daughter was born with a mild hearing loss that the newborn

> screening missed. I started asking questions when she was 1 yr. I new

> something wasn't right. I wasn't able to convince DRs till she was 18

> months, when I yelled her name. By the time she had her first

> timpanigram she was almost 2. He determined their was a loss and I

> should contact our local school district, which I did. She has been in

> Deaf/HOH pre-school ever since. I also took my first ASL class at this

> same time. We have had 2 ABR tests, the last on 9-11-03. It was 100

> decibals, which it where it has stayed. I was originally told that she

> didn't qualify for a CI. I never questioned that. I didn't know until

> a year ago that there is no way to tell for sure without an MRI. Then

> I started the process last October. She is going in for surgery on May

> 17th, 2006.

> Kristie mom to Emilie 5, profoundly Bilaturally deaf

>

>

>

>

>

>

> 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]

Hi Kristie

I think I just wrote a long reply to you on a bus story. Here is

another long reply from me.

I'm , Hayley's mom. Hayley is 13 and wears a cochlear implant

and a hearing aid. She went to school in Special Day Classes in CA

and then we moved in December 2004 here to PA; one reason so she

could attend Western PA school for the Deaf. Traditionally, it

seemed that deaf schools sort of shyed away from kids with CIs, but

when I called WPSD and told them what I was looking for, they

infomred me that around 30 plus kids out of around 200 had CIs and

more are getting them. Hayley's loss is 120 DB in the left, 90-95

in the right and she is CI'd on the left. We did a lot of auditory

rehab with a really great lady in Thousand Oaks, CA who works with

kids who sign and have implants, or only sign. (California Speech

and Rehab). Here at WPSD Hayley gets 90 mins a week of speech

therapy. It was important to me that Hayley always sign, and to get

the implant more to be aware of what is around her. Within a few

months she was working very hard (back in 2002/early 2003) at using

her voice. She needs to work on it a lot; it is so much work. I

recommend the following:

1. WASP cards - these are chunks of sounds like shh, sss, me, we,

pie etc. You can make games with these and M and Ms. They have

pictures on them that the kids like that signify the sound, along

with the sound chunk written on the card. We still use these.

Curricula/Training Programs

Bringing Sound to Life: Principles and Practices of Cochlear Implant

Rehabilitation

Available through Advanced Bionics:

http://www.bionicear.com/professionals/rehabmaterials.asp

This program provides a systematic approach to spoken language

habilitation for children of all ages. It includes a video training

series, a manual, and a program to develop phoneme perception and a

production called Word Associations for Syllable Perception (WASP).

The video training series includes four videotapes: 1) Building

Blocks of Spoken Language; 2) Understanding Hearing and Hearing

Loss; 3) Cochlear Implants and Children: An Opportunity, Not a Cure;

and 4) Principles and Practices of Cochlear Implant Rehabilitation.

The videos are an excellent resource for family education and/or

teacher training. The manual provides insights, strategies, and

tools integral to the spoken language habilitation process. The WASP

program includes a laminated set of picture cards. This program can

be purchased as a package or as individual components.

2. A book called Symbol Articulation -

http://www.acciinc.com/Html/Books/symbol_articulation.htm

3. M and Ms. You will use the M and Ms to place on the cards and

then when she hears the sound and knows it, she gets the M and M.

You can also teach colors with the M and Ms.

There is a guy by the name of Warren Estabrook who gave a workshop

for parents of implanted kids and I really liked him. Many on this

list have heard of him; I think he's an AV expert. I think what my

therapist did was take some of what he does and incorporated it with

sign - so the child is never lacking for communication.

I do want to say, though, that one of the reasons I wanted Hayley to

be implanted was because I naively thought that would help her with

reading. When she gets older, she may not use the implant because

many of her friends are deaf and don't use aids or CIs. By the way,

Hayley uses both the CI and a hearing aid too. Most of the kids I

know do.

I'm from Southern Ca, too. Ventura County.

> What is your communication method? Have your son learned to

speak from the CI? That is pretty amazing that your son still wears

the hearing aide. Everything I have heard says it's very confusing

for the brain to wear one with a CI.

[Guest guest]

Darla, Here is a great place to find out all sorts of " elementary " information:

www.beginningssvcs.com/

It is an organization in North Carolina that helps parents, especially when you

are just " beginning "

Another good website is www.handsandvoices.org I'm assuming you also have

seen the Listen Up website since you are on the list. Kay has a page there that

explains all the " LMNOPs " or acronyms.

Actually, it's not so elementary if you realize that the only folks that know

this stuff are us parents and people with a least a master's degree!

in GA