Re: New To The Board!

[Guest guest]

In a message dated 2/13/2006 12:40:05 P.M. Eastern Standard Time,

princess48074@... writes:

The other thing I am looking for is somewhere he can meet other

hearing impaired children.He has no friends.He is in the hearing

impaired program at school but he is the only one.I am from Michigan

any one with any suggestions would be great.

Nice to meet you all

,

Welcome to the list! Just to start off ... it sounds like Timmy is quite

lucky that he had such a caring step-mom waiting on the other side of that door!

Most of us here can appreciate how hard your struggle has been ... we've been

through similar ones. The details may be different, but you'll find plenty

of empathy here. It's a nice group of people.

I'm Jill, and our son Ian was diagnosed when he was about 7. Due to a rather

bad audiologist, his actual loss was not correctly diagnosed for about

another year. Ian has a progressive loss that is currently in the moderate

range,

and he may be profoundly deaf by the time he is an adult. Ian was aided at

about 9 and didn't get appropriate services and support in place until 6th

grade. It was an incredible struggle to make our district acknowledge that

Ian's

loss was educationally significant and required special services.

Ian is now 15, a sophomore in our local high school. His services include a

TOD (teacher of the deaf) one period a day to work on specific skills and

goals. The TOD is also called an HI (hearing itinerant) or HIRS (Hearing

Impaired

Related Service) depending on what paperwork you're reading. Ian has a

personal FM system with little boots that hook right onto his hearing aids. He

also has use of a laptop-like device called a Dana to use when taking notes.

(looking down to write while needing to lip read is rather difficult) He also

has other accommodations like preferential seating and modified testing

routines.

Ian is one-of-a-kind for our schools. I also wish there were D/HOH kids

around here for him to interact with, but there aren't. The closest child we

know

in our area is a kindergartner -- and I met her mom through this list (hi

Cheryl). Ian loves younger kids, but it's nowhere near the same as having a

D/HOH friend his own age. He is usually the first D/HOH (deaf/hard of hearing)

kid that his teachers have ever met. Often he is the only D/HOH person they've

met.

The parents here have talked about having a list like this for the kids ...

maybe we'll finally get one going since there are quite a few older kids here

now. In the meantime, if Timmy would like an online pen pal, let me know.

Ian emails and IMs with his friends all the time.

The phone has gotten harder for him lately and so Ian rarely uses it. We're

hoping to have a video phone installed sometime soon. Have you thought about

applying for a free one from Sorenson (there's another company, maybe

on)? If you'd like, I can find and send you those links. Once approved,

it'll

take a while to get it installed, but you could start the process now.

We're also taking sign (ASL) classes. It's been about a year. And like

Timmy, Ian is the best of the bunch in our family. Which only makes sense. He

can

finger spell so quickly, but can't read it anywhere near as quickly.

Unfortunately, there's only us to practice with. I'm hoping that the videophone

will

allow him to talk/sign with kids who are too far away to visit.

Like Timmy, Ian went through a period of frustration, anger and

disappointment. It was rough on him for a while. Ian was born hearing, probably

started

losing his hearing when he was about 3 or 4, and we didn't have a clue. He

speaks as clearly as any hearing person. Plus he taught himself to lip read

like

a pro, which is how he fooled the first audiologist into diagnosing a very

minor loss. The boy lip read the entire test through the glass. The stupid

doctor didn't avert his face when speaking or block Ian's view of his hands as

he pressed the little buttons for the tones. (sigh) Can you imagine an

audiologist that stupid? Oh well ... that's 8-year-old news.

In some ways, Ian was relieved to know that he was D/HOH and that aids would

help him hear again. But he also had to accept that the day might come when

the aids didn't work anymore. His loss started as a cookie-bite shape loss

dipping down to 35 db in his right ear and 15-20 db in his left. Both ears are

now about the same, 50-55 dbs. His loss tends to be slow and steady, but

every now and then he has a sudden loss. One year his left ear suddenly dropped

to match the right (20 dbs in 3 months). And about a year ago, he lost the

high and low tones so his audiogram now goes straight across. No one can

predict

how quickly it'll progress, or if one day it will simply stop. And that was

something he had to accept as well. He's pretty well adjusted at this point,

but it took a lot of work and a lot of love and support to get to this point.

I don't have any specific advice except that we always take things one day

(sometimes one crisis) at a time. Around this house, any and all topics of

conversation are welcome. We talk about emotions as readily as we do politics or

movies or music. I intentionally keep an open dialog going with both my kids

even if it seems completely casual. This way when something does come up

they have us/me as a resource. Our most recent crisis was my hearing daughter's

first crush and subsequent broken heart. It broke my heart so see her lose a

little more of her childish/innocent outlook on people/life. A rite of passage

I'd rather have skipped.

Before I talk on this list about something that seems a bit personal, I ask

Ian if it's okay and what he thinks is important to share with other parents

on that topic. I don't really need to do that, but it keeps him involved, our

ongoing dialog remains open, and his hearing loss remains a somewhat casual

topic. He likes this group because he says that it has helped me be a better

mom for him. (what a sweetie)

This approach works for us. For others it might not. I know many kids who

would rather die that openly discuss their issues or anything else. The really

great thing about this list is that we try to help each other find the

solutions that work for the individual families. And we readily acknowledge

that

what works for one family, won't work for many others. Sharing ideas makes it

possible for us to try out different things that we may never have thought

about on our own. If it works, great, if not, there's always something else to

try.

Ask some specific questions and you'll get plenty of advice. People here are

more than willing to share their experiences. (and as you can see, I talk

far too much, grin)

Again, welcome to the group,

Best -- Jill

[Guest guest]

Welcome Christy. I don't have any advice for you. (now 7) was diagnosed

shortly before he turned 5. At that age, kids are so accepting and we've yet to

deal with such issues. And we are blessed this year that there is also another

hearing impaired girl in his class, so for the kids, it's as normal as wearing

glasses. But I had to respond because I just feel so bad for Timmy being

dropped by his mom. Although no 10 year old would admit to it, they're still

babies at that age. It's just heartbreaking. Good for you for being such an

advocate for him. I'm sure all the effort you put into him today will come back

to you tenfold as he grows.

Cherie (mom to - 7 - SNHL, - 5, and - 4 - severe

continuous conductive loss)

Christy wrote:

Hi my name is and I am the step-mother to a child with

auditory neuropathy.this started to accure in the fourth grade at

which time he lived with his biological mom.The hearing loss

progressed rapidly and for a child at ten is was a very hard

adjustment.He started acting out so his mom decided she couldn't

handle him anymore and dropped him off at the door step.(literally)

Which for Timmy that only added to the anger.

It's been 2 years now with very little hearing left but he is now

adjusting.We have taken sign which he has picked up quicker then I

have.I had to fight the school systems to the end to get him the help

he needed.The start of sixth grade he was final labeled hearing

impaired and was able to recieve services that he so desperatly needed.

We have came a long way but I still seem to need some advice on

raising Timmy,ecspecially since I feel like I am doing it myself,my

husband(his dad)works lots of hours and his mom has not been involved

in his life a whole lot.

The other thing I am looking for is somewhere he can meet other

hearing impaired children.He has no friends.He is in the hearing

impaired program at school but he is the only one.I am from Michigan

any one with any suggestions would be great.

Nice to meet you all

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 Cheryl,My name is I have no idea why my messages come up Christy.There

is no one even in my house named Christy.I tried to change it but was unable to.

I don't expect praise from Timmy not now or even when he is older as long

as he knows I love him I will be happy with that.At this time in his life even

though his mom is not active in his life he still hold this hope and a

uncondional love for her.That is cool but I hate when she breaks his heart.With

the obstacles in has went through in his life I just want him to have healthy

relationships as he grow and to become a productive adult.

Cherie Myers wrote:

Welcome Christy. I don't have any advice for you. (now 7) was

diagnosed shortly before he turned 5. At that age, kids are so accepting and

we've yet to deal with such issues. And we are blessed this year that there is

also another hearing impaired girl in his class, so for the kids, it's as normal

as wearing glasses. But I had to respond because I just feel so bad for Timmy

being dropped by his mom. Although no 10 year old would admit to it, they're

still babies at that age. It's just heartbreaking. Good for you for being such

an advocate for him. I'm sure all the effort you put into him today will come

back to you tenfold as he grows.

Cherie (mom to - 7 - SNHL, - 5, and - 4 - severe

continuous conductive loss)

Christy wrote:

Hi my name is and I am the step-mother to a child with

auditory neuropathy.this started to accure in the fourth grade at

which time he lived with his biological mom.The hearing loss

progressed rapidly and for a child at ten is was a very hard

adjustment.He started acting out so his mom decided she couldn't

handle him anymore and dropped him off at the door step.(literally)

Which for Timmy that only added to the anger.

It's been 2 years now with very little hearing left but he is now

adjusting.We have taken sign which he has picked up quicker then I

have.I had to fight the school systems to the end to get him the help

he needed.The start of sixth grade he was final labeled hearing

impaired and was able to recieve services that he so desperatly needed.

We have came a long way but I still seem to need some advice on

raising Timmy,ecspecially since I feel like I am doing it myself,my

husband(his dad)works lots of hours and his mom has not been involved

in his life a whole lot.

The other thing I am looking for is somewhere he can meet other

hearing impaired children.He has no friends.He is in the hearing

impaired program at school but he is the only one.I am from Michigan

any one with any suggestions would be great.

Nice to meet you all

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]

The videophones sound great, but in the meanwhile, you can also look into

webcams, they're pretty inexpensive, and there's no long distance charges that

there may be with landlines, if they'll be signing with kids out of the area.

The quality is a lot better than what it used to be.

JillcWood@... wrote:

In a message dated 2/13/2006 12:40:05 P.M. Eastern Standard Time,

princess48074@... writes:

The other thing I am looking for is somewhere he can meet other

hearing impaired children.He has no friends.He is in the hearing

impaired program at school but he is the only one.I am from Michigan

any one with any suggestions would be great.

Nice to meet you all

,

Welcome to the list! Just to start off ... it sounds like Timmy is quite

lucky that he had such a caring step-mom waiting on the other side of that door!

Most of us here can appreciate how hard your struggle has been ... we've been

through similar ones. The details may be different, but you'll find plenty

of empathy here. It's a nice group of people.

I'm Jill, and our son Ian was diagnosed when he was about 7. Due to a rather

bad audiologist, his actual loss was not correctly diagnosed for about

another year. Ian has a progressive loss that is currently in the moderate

range,

and he may be profoundly deaf by the time he is an adult. Ian was aided at

about 9 and didn't get appropriate services and support in place until 6th

grade. It was an incredible struggle to make our district acknowledge that

Ian's

loss was educationally significant and required special services.

Ian is now 15, a sophomore in our local high school. His services include a

TOD (teacher of the deaf) one period a day to work on specific skills and

goals. The TOD is also called an HI (hearing itinerant) or HIRS (Hearing

Impaired

Related Service) depending on what paperwork you're reading. Ian has a

personal FM system with little boots that hook right onto his hearing aids. He

also has use of a laptop-like device called a Dana to use when taking notes.

(looking down to write while needing to lip read is rather difficult) He also

has other accommodations like preferential seating and modified testing

routines.

Ian is one-of-a-kind for our schools. I also wish there were D/HOH kids

around here for him to interact with, but there aren't. The closest child we

know

in our area is a kindergartner -- and I met her mom through this list (hi

Cheryl). Ian loves younger kids, but it's nowhere near the same as having a

D/HOH friend his own age. He is usually the first D/HOH (deaf/hard of hearing)

kid that his teachers have ever met. Often he is the only D/HOH person they've

met.

The parents here have talked about having a list like this for the kids ...

maybe we'll finally get one going since there are quite a few older kids here

now. In the meantime, if Timmy would like an online pen pal, let me know.

Ian emails and IMs with his friends all the time.

The phone has gotten harder for him lately and so Ian rarely uses it. We're

hoping to have a video phone installed sometime soon. Have you thought about

applying for a free one from Sorenson (there's another company, maybe

on)? If you'd like, I can find and send you those links. Once approved,

it'll

take a while to get it installed, but you could start the process now.

We're also taking sign (ASL) classes. It's been about a year. And like

Timmy, Ian is the best of the bunch in our family. Which only makes sense. He

can

finger spell so quickly, but can't read it anywhere near as quickly.

Unfortunately, there's only us to practice with. I'm hoping that the videophone

will

allow him to talk/sign with kids who are too far away to visit.

Like Timmy, Ian went through a period of frustration, anger and

disappointment. It was rough on him for a while. Ian was born hearing, probably

started

losing his hearing when he was about 3 or 4, and we didn't have a clue. He

speaks as clearly as any hearing person. Plus he taught himself to lip read

like

a pro, which is how he fooled the first audiologist into diagnosing a very

minor loss. The boy lip read the entire test through the glass. The stupid

doctor didn't avert his face when speaking or block Ian's view of his hands as

he pressed the little buttons for the tones. (sigh) Can you imagine an

audiologist that stupid? Oh well ... that's 8-year-old news.

In some ways, Ian was relieved to know that he was D/HOH and that aids would

help him hear again. But he also had to accept that the day might come when

the aids didn't work anymore. His loss started as a cookie-bite shape loss

dipping down to 35 db in his right ear and 15-20 db in his left. Both ears are

now about the same, 50-55 dbs. His loss tends to be slow and steady, but

every now and then he has a sudden loss. One year his left ear suddenly dropped

to match the right (20 dbs in 3 months). And about a year ago, he lost the

high and low tones so his audiogram now goes straight across. No one can

predict

how quickly it'll progress, or if one day it will simply stop. And that was

something he had to accept as well. He's pretty well adjusted at this point,

but it took a lot of work and a lot of love and support to get to this point.

I don't have any specific advice except that we always take things one day

(sometimes one crisis) at a time. Around this house, any and all topics of

conversation are welcome. We talk about emotions as readily as we do politics or

movies or music. I intentionally keep an open dialog going with both my kids

even if it seems completely casual. This way when something does come up

they have us/me as a resource. Our most recent crisis was my hearing daughter's

first crush and subsequent broken heart. It broke my heart so see her lose a

little more of her childish/innocent outlook on people/life. A rite of passage

I'd rather have skipped.

Before I talk on this list about something that seems a bit personal, I ask

Ian if it's okay and what he thinks is important to share with other parents

on that topic. I don't really need to do that, but it keeps him involved, our

ongoing dialog remains open, and his hearing loss remains a somewhat casual

topic. He likes this group because he says that it has helped me be a better

mom for him. (what a sweetie)

This approach works for us. For others it might not. I know many kids who

would rather die that openly discuss their issues or anything else. The really

great thing about this list is that we try to help each other find the

solutions that work for the individual families. And we readily acknowledge

that

what works for one family, won't work for many others. Sharing ideas makes it

possible for us to try out different things that we may never have thought

about on our own. If it works, great, if not, there's always something else to

try.

Ask some specific questions and you'll get plenty of advice. People here are

more than willing to share their experiences. (and as you can see, I talk

far too much, grin)

Again, welcome to the group,

Best -- Jill

[Guest guest]

>

> Hi my name is and I am the step-mother to a child with

> auditory neuropathy.this started to accure in the fourth grade at

> which time he lived with his biological mom.>>>

Do they know what caused him to develop AN at such a late age? My son

has AN but from birth, we assume although it did progress. He is now

12 and has had a cochlear implant for 7 years this last week.

Elaine

[Guest guest]

Wow Jill That was a great e-mail I seen myself as you talked about your

struggles.Timmy also was hearing for a better portion of his life and he can lip

read very well and speaks pretty good.The more his hearing goes the more his

words tend to blend together but you can still understand him good.With Timmy I

also think he was slipping through the cracks because for one the type of

hearing loss he has it fluctuates.So the school system thought it was more

selected hearing.He also wears a hearing aid and has FM unit but those devices

are not working quite as well as they were when he first started losing his

hearing.I am not sure how familiar the board is with auditory neuropathy but his

is due to the brain stem from the ear to the brain and when sound goes in the

ear by the time it gets to the brain its like a bunch of jumble.He hears tones

well it the speech discrimination that he has a hard time with.

This year is Timmy's first year with an interpreter it has helped him but I

worry that he will feel singled out.He doesn't talk about his feelings he got a

journal for Christmas which seems to help him with his anger he is also in home

base counseling.He sure has changed since the beginning.

He would love to have a Internet buddy like i said he has no friends for the

services that he needed he had to change schools and his social skills are not

great,but getting better.

Well thanks again for the warm welcome!!

JillcWood@... wrote:

In a message dated 2/13/2006 12:40:05 P.M. Eastern Standard Time,

princess48074@... writes:

The other thing I am looking for is somewhere he can meet other

hearing impaired children.He has no friends.He is in the hearing

impaired program at school but he is the only one.I am from Michigan

any one with any suggestions would be great.

Nice to meet you all

,

Welcome to the list! Just to start off ... it sounds like Timmy is quite

lucky that he had such a caring step-mom waiting on the other side of that door!

Most of us here can appreciate how hard your struggle has been ... we've been

through similar ones. The details may be different, but you'll find plenty

of empathy here. It's a nice group of people.

I'm Jill, and our son Ian was diagnosed when he was about 7. Due to a rather

bad audiologist, his actual loss was not correctly diagnosed for about

another year. Ian has a progressive loss that is currently in the moderate

range,

and he may be profoundly deaf by the time he is an adult. Ian was aided at

about 9 and didn't get appropriate services and support in place until 6th

grade. It was an incredible struggle to make our district acknowledge that

Ian's

loss was educationally significant and required special services.

Ian is now 15, a sophomore in our local high school. His services include a

TOD (teacher of the deaf) one period a day to work on specific skills and

goals. The TOD is also called an HI (hearing itinerant) or HIRS (Hearing

Impaired

Related Service) depending on what paperwork you're reading. Ian has a

personal FM system with little boots that hook right onto his hearing aids. He

also has use of a laptop-like device called a Dana to use when taking notes.

(looking down to write while needing to lip read is rather difficult) He also

has other accommodations like preferential seating and modified testing

routines.

Ian is one-of-a-kind for our schools. I also wish there were D/HOH kids

around here for him to interact with, but there aren't. The closest child we

know

in our area is a kindergartner -- and I met her mom through this list (hi

Cheryl). Ian loves younger kids, but it's nowhere near the same as having a

D/HOH friend his own age. He is usually the first D/HOH (deaf/hard of hearing)

kid that his teachers have ever met. Often he is the only D/HOH person they've

met.

The parents here have talked about having a list like this for the kids ...

maybe we'll finally get one going since there are quite a few older kids here

now. In the meantime, if Timmy would like an online pen pal, let me know.

Ian emails and IMs with his friends all the time.

The phone has gotten harder for him lately and so Ian rarely uses it. We're

hoping to have a video phone installed sometime soon. Have you thought about

applying for a free one from Sorenson (there's another company, maybe

on)? If you'd like, I can find and send you those links. Once approved,

it'll

take a while to get it installed, but you could start the process now.

We're also taking sign (ASL) classes. It's been about a year. And like

Timmy, Ian is the best of the bunch in our family. Which only makes sense. He

can

finger spell so quickly, but can't read it anywhere near as quickly.

Unfortunately, there's only us to practice with. I'm hoping that the videophone

will

allow him to talk/sign with kids who are too far away to visit.

Like Timmy, Ian went through a period of frustration, anger and

disappointment. It was rough on him for a while. Ian was born hearing, probably

started

losing his hearing when he was about 3 or 4, and we didn't have a clue. He

speaks as clearly as any hearing person. Plus he taught himself to lip read

like

a pro, which is how he fooled the first audiologist into diagnosing a very

minor loss. The boy lip read the entire test through the glass. The stupid

doctor didn't avert his face when speaking or block Ian's view of his hands as

he pressed the little buttons for the tones. (sigh) Can you imagine an

audiologist that stupid? Oh well ... that's 8-year-old news.

In some ways, Ian was relieved to know that he was D/HOH and that aids would

help him hear again. But he also had to accept that the day might come when

the aids didn't work anymore. His loss started as a cookie-bite shape loss

dipping down to 35 db in his right ear and 15-20 db in his left. Both ears are

now about the same, 50-55 dbs. His loss tends to be slow and steady, but

every now and then he has a sudden loss. One year his left ear suddenly dropped

to match the right (20 dbs in 3 months). And about a year ago, he lost the

high and low tones so his audiogram now goes straight across. No one can

predict

how quickly it'll progress, or if one day it will simply stop. And that was

something he had to accept as well. He's pretty well adjusted at this point,

but it took a lot of work and a lot of love and support to get to this point.

I don't have any specific advice except that we always take things one day

(sometimes one crisis) at a time. Around this house, any and all topics of

conversation are welcome. We talk about emotions as readily as we do politics or

movies or music. I intentionally keep an open dialog going with both my kids

even if it seems completely casual. This way when something does come up

they have us/me as a resource. Our most recent crisis was my hearing daughter's

first crush and subsequent broken heart. It broke my heart so see her lose a

little more of her childish/innocent outlook on people/life. A rite of passage

I'd rather have skipped.

Before I talk on this list about something that seems a bit personal, I ask

Ian if it's okay and what he thinks is important to share with other parents

on that topic. I don't really need to do that, but it keeps him involved, our

ongoing dialog remains open, and his hearing loss remains a somewhat casual

topic. He likes this group because he says that it has helped me be a better

mom for him. (what a sweetie)

This approach works for us. For others it might not. I know many kids who

would rather die that openly discuss their issues or anything else. The really

great thing about this list is that we try to help each other find the

solutions that work for the individual families. And we readily acknowledge

that

what works for one family, won't work for many others. Sharing ideas makes it

possible for us to try out different things that we may never have thought

about on our own. If it works, great, if not, there's always something else to

try.

Ask some specific questions and you'll get plenty of advice. People here are

more than willing to share their experiences. (and as you can see, I talk

far too much, grin)

Again, welcome to the group,

Best -- Jill

[Guest guest]

Hi Elaine,

At this time Timmy is like a guinea pig they think he may have had a stroke

at the age of two but nobody knew at the time.He also has cataracts in both eyes

which no one knows why.He also shakes when doing any fine motor skills

neurologist says it is nothing to worry about.I don't believe them and I am

planning to get a second opinion.

So tell me about the experience with CI I have taken Timmy to Children's

Hospital here and to University of Michigan and Children's says Timmy is not a

candidate and

Uof M says he would be a candidate.We haven't really done much more because it

has been such conflicting stories from the two hospitals so I was just wondering

if it has help your son?

Thanks

elaine_blackford wrote:

>

> Hi my name is and I am the step-mother to a child with

> auditory neuropathy.this started to accure in the fourth grade at

> which time he lived with his biological mom.>>>

Do they know what caused him to develop AN at such a late age? My son

has AN but from birth, we assume although it did progress. He is now

12 and has had a cochlear implant for 7 years this last week.

Elaine

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 Elaine,

> At this time Timmy is like a guinea pig >>>

I know that feeling. My son was the 16th person diagnosed with AN so

we have been the guinea pig for many years. He was one at the time

and is 12 now. He got his AN dagnosis in Feb of 1995 and we have

been to LSU/Kresge in New Orleans, Mayo in MN, Univ. Of Ca-Irvine,

Duke and Univ. of NC and turned down a few research opportunities at

Boystown Childrens

I would definately get a second or third or fourth opinion till you

get some answers. I don't know if you have joined the AN list (like

this one) but it would really help you. There are people from all

over the world on it and professionals that help us out as well.

Email me at Beat4girl@... and I will give you the email of some

people to contact in the USA. All are the worlds leading authorities

in AN. There should also be some parents in Michigan on the listserv

as well.

Elaine

[Guest guest]

>

> Hi Elaine,

> At this time Timmy is like a guinea pig >>>

I know that feeling. My son was the 16th person diagnosed with AN so

we have been the guinea pig for many years. He was one at the time

and is 12 now. He got his AN dagnosis in Feb of 1995 and we have

been to LSU/Kresge in New Orleans, Mayo in MN, Univ. Of Ca-Irvine,

Duke and Univ. of NC and turned down a few research opportunities at

Boystown Childrens

I would definately get a second or third or fourth opinion till you

get some answers. I don't know if you have joined the AN list (like

this one) but it would really help you. There are people from all

over the world on it and professionals that help us out as well.

Email me at Beat4girl@... and I will give you the email of some

people to contact in the USA. All are the worlds leading authorities

in AN. There should also be some parents in Michigan on the listserv

as well.

Elaine

[Guest guest]

In a message dated 2/13/2006 8:36:52 P.M. Eastern Standard Time,

princess48074@... writes:

..I am not sure how familiar the board is with auditory neuropathy

,

Ian doesn't have AN, but other kids on this board do, so they know things I

would never think to research. And I think a couple of the AN kids here have

CI implants. The screening for a CI has to do with the level hearing loss and

word recognition, but I don't know the details.

One of the girls in my scout troop has CAPD, with sounds like AN to me. (and

I haven't looked into this very much) She hears just fine, but the words

come through to her brain garbled. Given her level of understanding of spoken

language and how well she functions (a touch slower but just like all the other

kids) I think that child must be brilliant. Her last screening was at

something like 10% recognition. I am convinced on an almost daily basis that

our

kids are absolutely amazing!

When Ian was going through the roughest of times, we arranged for a

counselor for a few sessions. We were in the process of having a clinical

psychologist evaluate Ian in order to fight the school district (and prove he

wasn't

ADD, among other things.) So, I asked the doctor if we could tack on a few

sessions just for Ian, to help him deal with the stress, the frustration. It

wasn't long-term, in fact is was rather short term, but it really helped.

I think one of the most important things Ian learned from the psychologist

was that all his feeling were valid and it was okay and normal to have them.

I'd say being angry or frustrated was normal and he'd just smile and tell me

that moms have to say stuff like that. Ian was having anxiety attacks, and the

doc taught him some relaxation techniques. It was a really helpful thing.

What the doc taught us was that we needed to keep an open dialog going so that

Ian wouldn't turn in on himself -- he does that instead of acting out. It's

his personality. (and he says I can talk about this because it might help some

other kid -- he was really scared back then)

Does Timmy have his own screen name? If so, send it off-list

(_jillcwood@..._ (mailto:jillcwood@...) ) and I'll have Ian send him an

email -- if

that's okay with you. Ian will probably chat about scouting, about camping

(they were out camping this past weekend ... in the snow), about school ... the

normal stuff kids talk about. He's a good kid.

Best -- Jill

[Guest guest]

In a message dated 2/13/2006 8:36:52 P.M. Eastern Standard Time,

princess48074@... writes:

..I am not sure how familiar the board is with auditory neuropathy

,

Ian doesn't have AN, but other kids on this board do, so they know things I

would never think to research. And I think a couple of the AN kids here have

CI implants. The screening for a CI has to do with the level hearing loss and

word recognition, but I don't know the details.

One of the girls in my scout troop has CAPD, with sounds like AN to me. (and

I haven't looked into this very much) She hears just fine, but the words

come through to her brain garbled. Given her level of understanding of spoken

language and how well she functions (a touch slower but just like all the other

kids) I think that child must be brilliant. Her last screening was at

something like 10% recognition. I am convinced on an almost daily basis that

our

kids are absolutely amazing!

When Ian was going through the roughest of times, we arranged for a

counselor for a few sessions. We were in the process of having a clinical

psychologist evaluate Ian in order to fight the school district (and prove he

wasn't

ADD, among other things.) So, I asked the doctor if we could tack on a few

sessions just for Ian, to help him deal with the stress, the frustration. It

wasn't long-term, in fact is was rather short term, but it really helped.

I think one of the most important things Ian learned from the psychologist

was that all his feeling were valid and it was okay and normal to have them.

I'd say being angry or frustrated was normal and he'd just smile and tell me

that moms have to say stuff like that. Ian was having anxiety attacks, and the

doc taught him some relaxation techniques. It was a really helpful thing.

What the doc taught us was that we needed to keep an open dialog going so that

Ian wouldn't turn in on himself -- he does that instead of acting out. It's

his personality. (and he says I can talk about this because it might help some

other kid -- he was really scared back then)

Does Timmy have his own screen name? If so, send it off-list

(_jillcwood@..._ (mailto:jillcwood@...) ) and I'll have Ian send him an

email -- if

that's okay with you. Ian will probably chat about scouting, about camping

(they were out camping this past weekend ... in the snow), about school ... the

normal stuff kids talk about. He's a good kid.

Best -- Jill

[Guest guest]

Hi ,

I live in the Lansing area in MI. Please feel free to write, maybe we can

hook up at least over the phone. I have a 9 y/o who has a severe-profound

hearing loss.

Pam

pdlilley@...

The other thing I am looking for is somewhere he can meet other

hearing impaired children.He has no friends.He is in the hearing

impaired program at school but he is the only one.I am from Michigan

any one with any suggestions would be great.

Nice to meet you all

[Guest guest]

In a message dated 2/13/2006 3:10:44 P.M. Central Standard Time,

JillcWood@... writes:

The phone has gotten harder for him lately and so Ian rarely uses it.

Jill--

My kids use the Captel )captioned phone-- have you looked into that option?

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 2/13/2006 3:10:44 P.M. Central Standard Time,

JillcWood@... writes:

The phone has gotten harder for him lately and so Ian rarely uses it.

Jill--

My kids use the Captel )captioned phone-- have you looked into that option?

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 2/13/2006 3:10:44 P.M. Central Standard Time,

JillcWood@... writes:

The phone has gotten harder for him lately and so Ian rarely uses it.

Jill--

My kids use the Captel )captioned phone-- have you looked into that option?

Putz

Illinois Families for Hands & Voices

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

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

Email: support@...

[Guest guest]

Thanks Pam ,

Lansing isn't to far away.Do you have a daughter or a son?Have you looked

into the CI and if so what are your thoughts on it?

Pam Lilley wrote:

Hi ,

I live in the Lansing area in MI. Please feel free to write, maybe we can

hook up at least over the phone. I have a 9 y/o who has a severe-profound

hearing loss.

Pam

pdlilley@...

The other thing I am looking for is somewhere he can meet other

hearing impaired children.He has no friends.He is in the hearing

impaired program at school but he is the only one.I am from Michigan

any one with any suggestions would be great.

Nice to meet you all

[Guest guest]

The phone is frustrating to my daughter as well. If she takes her

aid out and amplifies sound quality is poor, if she leaves her aids

in she says the phone sounds like an echo. I just got a flyer from

our audiologist on a new bluetooth technology. It is a piece that

clips on to aids or can be used with cellular phones. It sounds

very promising. You may want to check one of the hearing aid

suppliers, google or cnet.com a search on bluetooth. Best of luck

and if I learn anything more I will forward on.

>

>

>

> In a message dated 2/13/2006 3:10:44 P.M. Central Standard Time,

> JillcWood@... writes:

>

> The phone has gotten harder for him lately and so Ian rarely uses

it.

>

>

> Jill--

> My kids use the Captel )captioned phone-- have you looked into

that option?

>

> Putz

> Illinois Families for Hands & Voices

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

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

> Email: support@...

>

>

>

[Guest guest]

The phone is frustrating to my daughter as well. If she takes her

aid out and amplifies sound quality is poor, if she leaves her aids

in she says the phone sounds like an echo. I just got a flyer from

our audiologist on a new bluetooth technology. It is a piece that

clips on to aids or can be used with cellular phones. It sounds

very promising. You may want to check one of the hearing aid

suppliers, google or cnet.com a search on bluetooth. Best of luck

and if I learn anything more I will forward on.

>

>

>

> In a message dated 2/13/2006 3:10:44 P.M. Central Standard Time,

> JillcWood@... writes:

>

> The phone has gotten harder for him lately and so Ian rarely uses

it.

>

>

> Jill--

> My kids use the Captel )captioned phone-- have you looked into

that option?

>

> Putz

> Illinois Families for Hands & Voices

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

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

> Email: support@...

>

>

>

[Guest guest]

The phone is frustrating to my daughter as well. If she takes her

aid out and amplifies sound quality is poor, if she leaves her aids

in she says the phone sounds like an echo. I just got a flyer from

our audiologist on a new bluetooth technology. It is a piece that

clips on to aids or can be used with cellular phones. It sounds

very promising. You may want to check one of the hearing aid

suppliers, google or cnet.com a search on bluetooth. Best of luck

and if I learn anything more I will forward on.

>

>

>

> In a message dated 2/13/2006 3:10:44 P.M. Central Standard Time,

> JillcWood@... writes:

>

> The phone has gotten harder for him lately and so Ian rarely uses

it.

>

>

> Jill--

> My kids use the Captel )captioned phone-- have you looked into

that option?

>

> Putz

> Illinois Families for Hands & Voices

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

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

> Email: support@...

>

>

>