Re: Introduction: Ruby's father

[Guest guest]

In a message dated 9/21/2006 11:19:47 A.M. Eastern Standard Time,

wendymattinglycarroll@... writes:

0-25dB Normal Limits

26-40dB Mild Hearing Loss

41-55dB Moderate Hearing Loss

56-70dB Moderately Severe Hearing Loss

71-90dB Severe Hearing Loss

91dB + Profound Hearing Loss

An ouch moment for me ... Ian is now at the cusp of the next level, about 55

db loss. Well, he was at his last audiogram four months ago. And by next

week, after his new test is done, we will most likely be firmly planted in the

upper end of the Moderately Severe range. These are those moments when I just

wish I could change places with the boy.

And I can guarantee you that his results will make me well up with tears,

and he will take it completely in stride, focusing more on where we are going

to go get pizza than on having crossed another border of some sort. This kid's

resilience amazes me.

Jill

[Guest guest]

In a message dated 9/21/2006 11:19:47 A.M. Eastern Standard Time,

wendymattinglycarroll@... writes:

0-25dB Normal Limits

26-40dB Mild Hearing Loss

41-55dB Moderate Hearing Loss

56-70dB Moderately Severe Hearing Loss

71-90dB Severe Hearing Loss

91dB + Profound Hearing Loss

An ouch moment for me ... Ian is now at the cusp of the next level, about 55

db loss. Well, he was at his last audiogram four months ago. And by next

week, after his new test is done, we will most likely be firmly planted in the

upper end of the Moderately Severe range. These are those moments when I just

wish I could change places with the boy.

And I can guarantee you that his results will make me well up with tears,

and he will take it completely in stride, focusing more on where we are going

to go get pizza than on having crossed another border of some sort. This kid's

resilience amazes me.

Jill

[Guest guest]

Hi Dave,

My stepdaughter, Eden , is currently wearing aids and using an FM

system at school. Her hearing loss is due to chemotherapy and ototoxic

antibiotics used as treatment for stage 4 neuroblastoma. I joined this

list after one of Bonnie's posts to the NB listserv, too.

You said that she has been around the block twice with NB, I assume that

she has relapsed at least once. Any of the platinum chemo drugs can

cause hearing loss. Has she had more of these drugs since her initial

dual-transplant treatment? These drugs have a cumulative effect (or so

our onc told us) which might mean that her hearing loss is again

progressive. Some of the ototoxic antibiotics may have been used on her

for her other medical conditions as well.

I guess what I'm saying is that she may have a more pronounced loss now

then she did at her last audiological exam. Eden's loss tapered off

about a year after the last platinum drug she received. She relapsed in

March and may end up having to have more of the same drugs or worse in

the future. So I hang around here getting ideas and strategies from the

hearing experts!

I say OH HECK YES! If Ruby is telling you that she is having problems

hearing at school, needing to ask for clarification from other students

then you need to let the teacher know that Ruby needs preferential

physical placement. In other words, she needs to be close to the

teacher, the teacher needs to face Ruby when she talking, they need to

avoid " loud " areas in the room...etc. Since she is an early reader you

may want to have the teacher write instructions on a white board for

her, too.

I think it would help to get a new audiogram done and to bring the

school on board now. Eden started out with a 504 , but quickly it was

changed to an IEP as her hearing diminished within just a few months of

being in kindergarten. We paid for the hearing aids, but the school

purchased the FM system. We have had great synchronicity with our

school; we have been blessed.

Does Ruby have a Caringbridge site or a webpage?

Best of luck to you,

For updates on Eden, please go to:

http://edenadams.blogspot.com http://edenadams.blogspot.com/>

www.edenadams.com http://www.edenadams.com/>

Introduction: Ruby's father

Hello All-

I have been lurking for a while, but now it's time to introduce

myself and ask for some advice. My daughter, Ruby, is five years

old. I am here because she has high-frequency hearing loss in both

ears as a side effect of chemotherapy and radiation. So far the loss

is essentially total above about 4000-5000 Hz, depending on what

measure you go by. She remains at risk for continued loss and it

remains to be seen if the loss will extend to the so-called speech

range and if she will need hearing aids or not. Ruby has been

fighting a cancer known as neuroblastoma since she was about four

months old and has several challenging side effects of both the

cancer and the therapy. Her tumor crushed her spinal cord, so she

also has a variety of paralysis issues that have kept us busy,

although I am happy to report that she does walk, albeit not strongly

or for great distances, with the aid of braces. The original

prognosis, however, was that she would never regain use of her legs,

so we are very happy that her hard work has paid off. Ruby also has

urological and orthopedic issues, so things are always busy. The

cancer prognosis is guarded, but things are going well now. She

finished her last chemotherapy in July and remains free of any

detectable cancer as of her last scans in July. She is scanned every

three months and will be for some time. The relapse rate is very

high for neuroblastoma and Ruby has already been around the block

twice with the disease, so things are always guarded.

But Ruby herself is a delight. Like most kids I have met with

serious illness, Ruby is not defined by her medical conditions. She

is bright, happy, fun-loving and generally looking for ways to be a

kid. If you would ever like to check in on her health status or see

some pictures, she does have a free, caringbridge website at: http://

www.caringbridge.org/visit/ruby. We don't generally publicize that

website and take a fairly private approach, but once I involve people

and tell them about Ruby, I like to give them the ability to check in

when they want. Ruby's Mom, Sara, and I try to keep the site upbeat

and have something of a pact that we don't update things when we are

feeling very low or worried. If you were to go back through the old

journal entries, you might find that we didn't always succeed in that

during things like stem cell transplants, but mostly we want to make

it a place friends and family are comfortable getting the news. No

sugar coating, but no need to drag everyone through all of our angst,

either!

So... enough introduction. Now I have a question. While Ruby's

hearing loss is not supposed to disturb common speech frequencies,

her behavior makes me wonder if that is really true. She started

kindergarten this year and the environment at school is loud, even

cacophonous. We are a pretty quiet family, I think, and so the

sensory overload bothers me when I am there, which makes it hard for

me to know if it is something I need to try to intervene in for

Ruby. I have talked to her about it, and she says that she can't

hear her teacher sometimes and has to ask others to explain what

instructions have been given sometimes. Ruby is very smart and so

will get by in kindergarten without intervention, but I am wondering

what those of you with experience think about it. (Ah... I admit

it... I love my daughter and am not that objective about her... but I

do think she is pretty smart and somehow self motivating. She

taught herself to read so well at the age of four, that she reads

rather long, chapter books like the old Boxcar Children mysteries by

herself. But, then again, what better thing to do during months and

months of chemotherapy than read?) Clearly, as she gets older, it

will be more and more important to be tuned in to what the teacher

says. I worry that she will develop her own coping mechanisms and do

well enough, but never really get the education she should because

she is always having to compensate.

So, I guess I am asking if anyone has experience with rather low-

levels of hearing loss and if you think it is something that should

be dealt with in a school setting. I know from reading posts through

the weeks that many of you have children with much more profound

hearing loss and so might not have an opinion on this, but perhaps

there is a group out there that has had progressive loss or some

other similar situation that might have suggestions for me. The

timing of this posting is not an accident. We have a meeting this

Friday to discuss Ruby's IEP with the school. Despite her paralysis

and other issues, I suspect they are going to want to give her a 504

Plan rather than an IEP and I am, honestly, not sure what I want from

them. The physical therapists they have provided to date have not

inspired much confidence, so that might not be worth pursuing. But

Ruby still tires very easily and needs extra time and accommodation

to get places and be involved in things. She is clearly not to the

point of needing an FM system, but should we be demanding seating

near the teacher and anything else like that?

Thank you all for reading and for any support you can offer. I hope

I can return the favor sometime.

Best-

Elbert

Baltimore, MD

[Guest guest]

Hi Dave,

My stepdaughter, Eden , is currently wearing aids and using an FM

system at school. Her hearing loss is due to chemotherapy and ototoxic

antibiotics used as treatment for stage 4 neuroblastoma. I joined this

list after one of Bonnie's posts to the NB listserv, too.

You said that she has been around the block twice with NB, I assume that

she has relapsed at least once. Any of the platinum chemo drugs can

cause hearing loss. Has she had more of these drugs since her initial

dual-transplant treatment? These drugs have a cumulative effect (or so

our onc told us) which might mean that her hearing loss is again

progressive. Some of the ototoxic antibiotics may have been used on her

for her other medical conditions as well.

I guess what I'm saying is that she may have a more pronounced loss now

then she did at her last audiological exam. Eden's loss tapered off

about a year after the last platinum drug she received. She relapsed in

March and may end up having to have more of the same drugs or worse in

the future. So I hang around here getting ideas and strategies from the

hearing experts!

I say OH HECK YES! If Ruby is telling you that she is having problems

hearing at school, needing to ask for clarification from other students

then you need to let the teacher know that Ruby needs preferential

physical placement. In other words, she needs to be close to the

teacher, the teacher needs to face Ruby when she talking, they need to

avoid " loud " areas in the room...etc. Since she is an early reader you

may want to have the teacher write instructions on a white board for

her, too.

I think it would help to get a new audiogram done and to bring the

school on board now. Eden started out with a 504 , but quickly it was

changed to an IEP as her hearing diminished within just a few months of

being in kindergarten. We paid for the hearing aids, but the school

purchased the FM system. We have had great synchronicity with our

school; we have been blessed.

Does Ruby have a Caringbridge site or a webpage?

Best of luck to you,

For updates on Eden, please go to:

http://edenadams.blogspot.com http://edenadams.blogspot.com/>

www.edenadams.com http://www.edenadams.com/>

Introduction: Ruby's father

Hello All-

I have been lurking for a while, but now it's time to introduce

myself and ask for some advice. My daughter, Ruby, is five years

old. I am here because she has high-frequency hearing loss in both

ears as a side effect of chemotherapy and radiation. So far the loss

is essentially total above about 4000-5000 Hz, depending on what

measure you go by. She remains at risk for continued loss and it

remains to be seen if the loss will extend to the so-called speech

range and if she will need hearing aids or not. Ruby has been

fighting a cancer known as neuroblastoma since she was about four

months old and has several challenging side effects of both the

cancer and the therapy. Her tumor crushed her spinal cord, so she

also has a variety of paralysis issues that have kept us busy,

although I am happy to report that she does walk, albeit not strongly

or for great distances, with the aid of braces. The original

prognosis, however, was that she would never regain use of her legs,

so we are very happy that her hard work has paid off. Ruby also has

urological and orthopedic issues, so things are always busy. The

cancer prognosis is guarded, but things are going well now. She

finished her last chemotherapy in July and remains free of any

detectable cancer as of her last scans in July. She is scanned every

three months and will be for some time. The relapse rate is very

high for neuroblastoma and Ruby has already been around the block

twice with the disease, so things are always guarded.

But Ruby herself is a delight. Like most kids I have met with

serious illness, Ruby is not defined by her medical conditions. She

is bright, happy, fun-loving and generally looking for ways to be a

kid. If you would ever like to check in on her health status or see

some pictures, she does have a free, caringbridge website at: http://

www.caringbridge.org/visit/ruby. We don't generally publicize that

website and take a fairly private approach, but once I involve people

and tell them about Ruby, I like to give them the ability to check in

when they want. Ruby's Mom, Sara, and I try to keep the site upbeat

and have something of a pact that we don't update things when we are

feeling very low or worried. If you were to go back through the old

journal entries, you might find that we didn't always succeed in that

during things like stem cell transplants, but mostly we want to make

it a place friends and family are comfortable getting the news. No

sugar coating, but no need to drag everyone through all of our angst,

either!

So... enough introduction. Now I have a question. While Ruby's

hearing loss is not supposed to disturb common speech frequencies,

her behavior makes me wonder if that is really true. She started

kindergarten this year and the environment at school is loud, even

cacophonous. We are a pretty quiet family, I think, and so the

sensory overload bothers me when I am there, which makes it hard for

me to know if it is something I need to try to intervene in for

Ruby. I have talked to her about it, and she says that she can't

hear her teacher sometimes and has to ask others to explain what

instructions have been given sometimes. Ruby is very smart and so

will get by in kindergarten without intervention, but I am wondering

what those of you with experience think about it. (Ah... I admit

it... I love my daughter and am not that objective about her... but I

do think she is pretty smart and somehow self motivating. She

taught herself to read so well at the age of four, that she reads

rather long, chapter books like the old Boxcar Children mysteries by

herself. But, then again, what better thing to do during months and

months of chemotherapy than read?) Clearly, as she gets older, it

will be more and more important to be tuned in to what the teacher

says. I worry that she will develop her own coping mechanisms and do

well enough, but never really get the education she should because

she is always having to compensate.

So, I guess I am asking if anyone has experience with rather low-

levels of hearing loss and if you think it is something that should

be dealt with in a school setting. I know from reading posts through

the weeks that many of you have children with much more profound

hearing loss and so might not have an opinion on this, but perhaps

there is a group out there that has had progressive loss or some

other similar situation that might have suggestions for me. The

timing of this posting is not an accident. We have a meeting this

Friday to discuss Ruby's IEP with the school. Despite her paralysis

and other issues, I suspect they are going to want to give her a 504

Plan rather than an IEP and I am, honestly, not sure what I want from

them. The physical therapists they have provided to date have not

inspired much confidence, so that might not be worth pursuing. But

Ruby still tires very easily and needs extra time and accommodation

to get places and be involved in things. She is clearly not to the

point of needing an FM system, but should we be demanding seating

near the teacher and anything else like that?

Thank you all for reading and for any support you can offer. I hope

I can return the favor sometime.

Best-

Elbert

Baltimore, MD

[Guest guest]

This kid's

> resilience amazes me.

>

> Jill

I have no doubt at all that Ian's resilience is a direct result of

the positive attitude with which you approach life and proactive

stance you take in dealing with all challenges. Ian no doubt knows

that he has the strength to face what ever may come, and that you, the

big bear of a Dad and his annoying little sister will always be

standing beside him to support his efforts. Just remember that when

you have those teary moments, you have several hundred people that are

standing beside you ready to offer that great big cyber hug, should

you need it.

Warmest Regards, and a great big cyber hug too...

Tracey

[Guest guest]

This kid's

> resilience amazes me.

>

> Jill

I have no doubt at all that Ian's resilience is a direct result of

the positive attitude with which you approach life and proactive

stance you take in dealing with all challenges. Ian no doubt knows

that he has the strength to face what ever may come, and that you, the

big bear of a Dad and his annoying little sister will always be

standing beside him to support his efforts. Just remember that when

you have those teary moments, you have several hundred people that are

standing beside you ready to offer that great big cyber hug, should

you need it.

Warmest Regards, and a great big cyber hug too...

Tracey

[Guest guest]

- welcome to the group. I am ,mother to Hayley, 14,

profoundly, prelingually deaf, wears one hearing aid and has a

cochlear implant and goes to deaf school and uses ASL.

I have been away from my computer for the last couple days, so I am

sure others have written to you about better seating and acoustics.

Also maybe tennis balls on the chair legs.

Best wishes and welcome,

> So... enough introduction. Now I have a question. While Ruby's

> hearing loss is not supposed to disturb common speech

frequencies,

> her behavior makes me wonder if that is really true. She started

> kindergarten this year and the environment at school is loud,

even

> cacophonous. We are a pretty quiet family, I think, and so the

> sensory overload bothers me when I am there, which makes it hard

for

> me to know if it is something I need to try to intervene in for

> Ruby. I have talked to her about it, and she says that she can't

> hear her teacher sometimes and has to ask others to explain what

> instructions have been given sometimes. Ruby is very smart and

so

> will get by in kindergarten without intervention, but I am

wondering

> what those of you with experience think about it. (Ah... I admit

> it... I love my daughter and am not that objective about her...

but I

> do think she is pretty smart and somehow self motivating. She

> taught herself to read so well at the age of four, that she reads

> rather long, chapter books like the old Boxcar Children mysteries

by

> herself. But, then again, what better thing to do during months

and

> months of chemotherapy than read?) Clearly, as she gets older,

it

> will be more and more important to be tuned in to what the

teacher

> says. I worry that she will develop her own coping mechanisms and

do

> well enough, but never really get the education she should

because

> she is always having to compensate.

>

> So, I guess I am asking if anyone has experience with rather low-

> levels of hearing loss and if you think it is something that

should

> be dealt with in a school setting. I know from reading posts

through

> the weeks that many of you have children with much more profound

> hearing loss and so might not have an opinion on this, but

perhaps

> there is a group out there that has had progressive loss or some

> other similar situation that might have suggestions for me. The

> timing of this posting is not an accident. We have a meeting

this

> Friday to discuss Ruby's IEP with the school. Despite her

paralysis

> and other issues, I suspect they are going to want to give her a

504

> Plan rather than an IEP and I am, honestly, not sure what I want

from

> them. The physical therapists they have provided to date have

not

> inspired much confidence, so that might not be worth pursuing.

But

> Ruby still tires very easily and needs extra time and

accommodation

> to get places and be involved in things. She is clearly not to

the

> point of needing an FM system, but should we be demanding seating

> near the teacher and anything else like that?

>

> Thank you all for reading and for any support you can offer. I

hope

> I can return the favor sometime.

>

> Best-

> Elbert

> Baltimore, MD

>

[Guest guest]

- welcome to the group. I am ,mother to Hayley, 14,

profoundly, prelingually deaf, wears one hearing aid and has a

cochlear implant and goes to deaf school and uses ASL.

I have been away from my computer for the last couple days, so I am

sure others have written to you about better seating and acoustics.

Also maybe tennis balls on the chair legs.

Best wishes and welcome,

> So... enough introduction. Now I have a question. While Ruby's

> hearing loss is not supposed to disturb common speech

frequencies,

> her behavior makes me wonder if that is really true. She started

> kindergarten this year and the environment at school is loud,

even

> cacophonous. We are a pretty quiet family, I think, and so the

> sensory overload bothers me when I am there, which makes it hard

for

> me to know if it is something I need to try to intervene in for

> Ruby. I have talked to her about it, and she says that she can't

> hear her teacher sometimes and has to ask others to explain what

> instructions have been given sometimes. Ruby is very smart and

so

> will get by in kindergarten without intervention, but I am

wondering

> what those of you with experience think about it. (Ah... I admit

> it... I love my daughter and am not that objective about her...

but I

> do think she is pretty smart and somehow self motivating. She

> taught herself to read so well at the age of four, that she reads

> rather long, chapter books like the old Boxcar Children mysteries

by

> herself. But, then again, what better thing to do during months

and

> months of chemotherapy than read?) Clearly, as she gets older,

it

> will be more and more important to be tuned in to what the

teacher

> says. I worry that she will develop her own coping mechanisms and

do

> well enough, but never really get the education she should

because

> she is always having to compensate.

>

> So, I guess I am asking if anyone has experience with rather low-

> levels of hearing loss and if you think it is something that

should

> be dealt with in a school setting. I know from reading posts

through

> the weeks that many of you have children with much more profound

> hearing loss and so might not have an opinion on this, but

perhaps

> there is a group out there that has had progressive loss or some

> other similar situation that might have suggestions for me. The

> timing of this posting is not an accident. We have a meeting

this

> Friday to discuss Ruby's IEP with the school. Despite her

paralysis

> and other issues, I suspect they are going to want to give her a

504

> Plan rather than an IEP and I am, honestly, not sure what I want

from

> them. The physical therapists they have provided to date have

not

> inspired much confidence, so that might not be worth pursuing.

But

> Ruby still tires very easily and needs extra time and

accommodation

> to get places and be involved in things. She is clearly not to

the

> point of needing an FM system, but should we be demanding seating

> near the teacher and anything else like that?

>

> Thank you all for reading and for any support you can offer. I

hope

> I can return the favor sometime.

>

> Best-

> Elbert

> Baltimore, MD

>

[Guest guest]

- welcome to the group. I am ,mother to Hayley, 14,

profoundly, prelingually deaf, wears one hearing aid and has a

cochlear implant and goes to deaf school and uses ASL.

I have been away from my computer for the last couple days, so I am

sure others have written to you about better seating and acoustics.

Also maybe tennis balls on the chair legs.

Best wishes and welcome,

> So... enough introduction. Now I have a question. While Ruby's

> hearing loss is not supposed to disturb common speech

frequencies,

> her behavior makes me wonder if that is really true. She started

> kindergarten this year and the environment at school is loud,

even

> cacophonous. We are a pretty quiet family, I think, and so the

> sensory overload bothers me when I am there, which makes it hard

for

> me to know if it is something I need to try to intervene in for

> Ruby. I have talked to her about it, and she says that she can't

> hear her teacher sometimes and has to ask others to explain what

> instructions have been given sometimes. Ruby is very smart and

so

> will get by in kindergarten without intervention, but I am

wondering

> what those of you with experience think about it. (Ah... I admit

> it... I love my daughter and am not that objective about her...

but I

> do think she is pretty smart and somehow self motivating. She

> taught herself to read so well at the age of four, that she reads

> rather long, chapter books like the old Boxcar Children mysteries

by

> herself. But, then again, what better thing to do during months

and

> months of chemotherapy than read?) Clearly, as she gets older,

it

> will be more and more important to be tuned in to what the

teacher

> says. I worry that she will develop her own coping mechanisms and

do

> well enough, but never really get the education she should

because

> she is always having to compensate.

>

> So, I guess I am asking if anyone has experience with rather low-

> levels of hearing loss and if you think it is something that

should

> be dealt with in a school setting. I know from reading posts

through

> the weeks that many of you have children with much more profound

> hearing loss and so might not have an opinion on this, but

perhaps

> there is a group out there that has had progressive loss or some

> other similar situation that might have suggestions for me. The

> timing of this posting is not an accident. We have a meeting

this

> Friday to discuss Ruby's IEP with the school. Despite her

paralysis

> and other issues, I suspect they are going to want to give her a

504

> Plan rather than an IEP and I am, honestly, not sure what I want

from

> them. The physical therapists they have provided to date have

not

> inspired much confidence, so that might not be worth pursuing.

But

> Ruby still tires very easily and needs extra time and

accommodation

> to get places and be involved in things. She is clearly not to

the

> point of needing an FM system, but should we be demanding seating

> near the teacher and anything else like that?

>

> Thank you all for reading and for any support you can offer. I

hope

> I can return the favor sometime.

>

> Best-

> Elbert

> Baltimore, MD

>

[Guest guest]

Oh Jill - a big hug to you! That's the thing I always dreaded most with

our boys - that they'd lose the little bit of hearing they had. The odd

thing is when Tom finally *did* lose more hearing, it almost made it

easier knowing what to do... It was hard - and it took me a few months

to adjust to being a " Ci family " and realizing that Tom especially was

deaf enough to need one.

Barbara

JillcWood@... wrote:

>

> In a message dated 9/21/2006 11:19:47 A.M. Eastern Standard Time,

> wendymattinglycarroll@... writes:

>

> 0-25dB Normal Limits

> 26-40dB Mild Hearing Loss

> 41-55dB Moderate Hearing Loss

> 56-70dB Moderately Severe Hearing Loss

> 71-90dB Severe Hearing Loss

> 91dB + Profound Hearing Loss

>

>

>

>

>

> An ouch moment for me ... Ian is now at the cusp of the next level, about 55

> db loss. Well, he was at his last audiogram four months ago. And by next

> week, after his new test is done, we will most likely be firmly planted in the

> upper end of the Moderately Severe range. These are those moments when I just

> wish I could change places with the boy.

>

> And I can guarantee you that his results will make me well up with tears,

> and he will take it completely in stride, focusing more on where we are going

> to go get pizza than on having crossed another border of some sort. This

kid's

> resilience amazes me.

>

> Jill

>

>

>

>

>

[Guest guest]

Oh Jill - a big hug to you! That's the thing I always dreaded most with

our boys - that they'd lose the little bit of hearing they had. The odd

thing is when Tom finally *did* lose more hearing, it almost made it

easier knowing what to do... It was hard - and it took me a few months

to adjust to being a " Ci family " and realizing that Tom especially was

deaf enough to need one.

Barbara

JillcWood@... wrote:

>

> In a message dated 9/21/2006 11:19:47 A.M. Eastern Standard Time,

> wendymattinglycarroll@... writes:

>

> 0-25dB Normal Limits

> 26-40dB Mild Hearing Loss

> 41-55dB Moderate Hearing Loss

> 56-70dB Moderately Severe Hearing Loss

> 71-90dB Severe Hearing Loss

> 91dB + Profound Hearing Loss

>

>

>

>

>

> An ouch moment for me ... Ian is now at the cusp of the next level, about 55

> db loss. Well, he was at his last audiogram four months ago. And by next

> week, after his new test is done, we will most likely be firmly planted in the

> upper end of the Moderately Severe range. These are those moments when I just

> wish I could change places with the boy.

>

> And I can guarantee you that his results will make me well up with tears,

> and he will take it completely in stride, focusing more on where we are going

> to go get pizza than on having crossed another border of some sort. This

kid's

> resilience amazes me.

>

> Jill

>

>

>

>

>

[Guest guest]

Oh Jill - a big hug to you! That's the thing I always dreaded most with

our boys - that they'd lose the little bit of hearing they had. The odd

thing is when Tom finally *did* lose more hearing, it almost made it

easier knowing what to do... It was hard - and it took me a few months

to adjust to being a " Ci family " and realizing that Tom especially was

deaf enough to need one.

Barbara

JillcWood@... wrote:

>

> In a message dated 9/21/2006 11:19:47 A.M. Eastern Standard Time,

> wendymattinglycarroll@... writes:

>

> 0-25dB Normal Limits

> 26-40dB Mild Hearing Loss

> 41-55dB Moderate Hearing Loss

> 56-70dB Moderately Severe Hearing Loss

> 71-90dB Severe Hearing Loss

> 91dB + Profound Hearing Loss

>

>

>

>

>

> An ouch moment for me ... Ian is now at the cusp of the next level, about 55

> db loss. Well, he was at his last audiogram four months ago. And by next

> week, after his new test is done, we will most likely be firmly planted in the

> upper end of the Moderately Severe range. These are those moments when I just

> wish I could change places with the boy.

>

> And I can guarantee you that his results will make me well up with tears,

> and he will take it completely in stride, focusing more on where we are going

> to go get pizza than on having crossed another border of some sort. This

kid's

> resilience amazes me.

>

> Jill

>

>

>

>

>

[Guest guest]

I know how you feel. My daughter started in the mild range last year and we

had a hard time accepting that. She has now progressed into moderately

severe to severe. My family has a hard time believing that there is nothing

we can do to stop the progressive loss.

>From: JillcWood@...

>Reply-To: Listen-Up

>To: Listen-Up

>Subject: Re: Re: Introduction: Ruby's father

>Date: Thu, 21 Sep 2006 16:59:03 EDT

>

>

>In a message dated 9/21/2006 11:19:47 A.M. Eastern Standard Time,

>wendymattinglycarroll@... writes:

>

>0-25dB Normal Limits

>26-40dB Mild Hearing Loss

>41-55dB Moderate Hearing Loss

>56-70dB Moderately Severe Hearing Loss

>71-90dB Severe Hearing Loss

>91dB + Profound Hearing Loss

>

>

>

>

>

>An ouch moment for me ... Ian is now at the cusp of the next level, about

>55

>db loss. Well, he was at his last audiogram four months ago. And by next

>week, after his new test is done, we will most likely be firmly planted in

>the

>upper end of the Moderately Severe range. These are those moments when I

>just

>wish I could change places with the boy.

>

>And I can guarantee you that his results will make me well up with tears,

>and he will take it completely in stride, focusing more on where we are

>going

>to go get pizza than on having crossed another border of some sort. This

>kid's

>resilience amazes me.

>

>Jill

>

>

>

>

>

[Guest guest]

Hi - and to everyone who's new here - welcome! I have two boys

who are deaf. Tom is 14 and is in 8th grade; Sam is 11 and in 6th

grade. Both boys are deaf, both have a cochlear implant in their right

ear and wear a hearing aid in the left. Implants are relatively new to

us - Tom's surgery was Nov. last year, Sam had his surgery just four

months ago in May.

Barbara in NH

[Guest guest]

Hi - and to everyone who's new here - welcome! I have two boys

who are deaf. Tom is 14 and is in 8th grade; Sam is 11 and in 6th

grade. Both boys are deaf, both have a cochlear implant in their right

ear and wear a hearing aid in the left. Implants are relatively new to

us - Tom's surgery was Nov. last year, Sam had his surgery just four

months ago in May.

Barbara in NH

[Guest guest]

In a message dated 9/21/2006 6:57:01 P.M. Eastern Standard Time,

wendymattinglycarroll@... writes:

My family has a hard time believing that there is nothing

we can do to stop the progressive loss.

,

Not only can we do nothing for now, but we have no clue if the loss will

stop at some point. We have competing diagnosis from some of the best doctors

you can find, and they don't agree with each other. For us, only time will tell.

And sometimes I think that makes it easier since we then have hopes that it

will stop someplace around 60-70 dbs (one diagnosis). But then we actually

don't know and this downward trend could just as easily continue until he is

profoundly deaf (the other diagnosis).

And neither one bothers Ian because he has a plan. Once he is old enough and

the physiology of his middle ear has matured, he plans to have the surgery

that could replace his middle ear bones, or have an implant (CI or BAHA). Time

will tell which choice is possible.

But for me, as the mom, I watch his loss slowly progress and it just gets to

me.

Best -- Jill

[Guest guest]

Tracey,

Thanks! You don't know how much I need to hear that today. Since we were

gone for most of August, a lot of the check-ups and doctor visits had to happen

along with the beginning of school. Everything from the audi to the

dermatologist. And when it all happens in such a short timeframe, it's all more

focused and I see more clearly all the little things that kid deals with

everyday.

Breaks my heart, but you're right about the proactive stance. It really

makes a difference for him that we show that one and rarely the one that feels

guilty or regrets.

Still, there's something about the kid's calm personality that is just there

and always has been.

When Ian was little, still in pre-K, we took him to a fair. He and his

friend had money for rides and cotton candy (ick!) His friend had his clutched

tightly in his hand and Ian handed his to me to hold, and I put it into a

little ziplock and into my pocket. I offered to hold his friend's money as

well,

but he wouldn't let it go (so I gave him a zip-lock for his). I then overheard

their conversation, his friend asked why he " gave back " his money. Ian said,

he didn't give it back, that I was just holding it for him so he wouldn't

lose it and I'd give it to him when he needed it. He said that we always gave

it to him until it was all used up and his bag was empty, and we never lost

anything, so it was safer that way. (I ended up holding his friends money, but

only while they were on the rides.)

At that point I turned to my husband and wondered aloud just how had we

raised a kid who was that secure in us. Lord knows we weren't, we were

definitely

faking it half the time, just like every other parent. I swear part of my

drive to make things happen for Ian was because he believed I could and would

do it for him.

Best -- Jill

[Guest guest]

In a message dated 9/21/2006 6:38:33 P.M. Eastern Standard Time,

Barbara.T.Mellert@... writes:

Oh Jill - a big hug to you! That's the thing I always dreaded most with

our boys - that they'd lose the little bit of hearing they had. The odd

thing is when Tom finally *did* lose more hearing, it almost made it

easier knowing what to do... It was hard - and it took me a few months

to adjust to being a " Ci family " and realizing that Tom especially was

deaf enough to need one.

Barbara

Thanks for the hugs. And that's my biggest fear as well. Yet I sometimes

think this would be so much easier if he'd just get it over with an lose

whatever he's going to lose and we could just be done with it. And then I think

that

is a terrible thought and I should be ashamed of myself.

The slow incremental loss is in many ways easier. When he's had sudden

drops, the adjustment period is harder, he gets a bit depressed and frustrated.

The slow loss means he's adjusting as he goes along, without even realizing it.

But for me, sometimes it feels like an eight-year long version of a slow

water torture. When he crosses the boundaries between levels, I find that hard.

It really is only 3-5 more dbs, a small change. But that boundary makes it

seem like more. And it was rough on me when he " outgrew " his aids and he needed

stronger ones. I simply handled it, took him shopping so to speak. He had no

problem with it and liked getting new " bionics. " He really likes the new

programs and the directional mikes are better. But for me as the mom, that

process tugged at my heart because I had to plan for new ones that he could

" grow

into " like a pair of sneakers that are a bit too big. Except, of course,

it's not sneakers or oversized t-shirts I was buying.

Maybe it's just a bad week for me, and yet there's nothing really bad about

it. Just a bunch of little reminders that have added up to wear me down.

Best -- Jill

[Guest guest]

In a message dated 9/27/2006 6:28:18 P.M. Eastern Standard Time,

tracey@... writes:

Now, I will

wait and see if it will be used or not. I really hope she tries it,

as I think she will see what a great tool it can be.

If she doesn't use it, then the school district is out of compliance. So, if

she doesn't " try " it soon, then I'd be making noise, and keeping track of

every day it's not used after having been written into the official plan. Wait

and watch is okay for the moment, but if the teacher ignores the equipment for

much longer, then I'd be making some loud noises.

Best -- Jill

[Guest guest]

In a message dated 9/27/2006 6:28:18 P.M. Eastern Standard Time,

tracey@... writes:

Now, I will

wait and see if it will be used or not. I really hope she tries it,

as I think she will see what a great tool it can be.

If she doesn't use it, then the school district is out of compliance. So, if

she doesn't " try " it soon, then I'd be making noise, and keeping track of

every day it's not used after having been written into the official plan. Wait

and watch is okay for the moment, but if the teacher ignores the equipment for

much longer, then I'd be making some loud noises.

Best -- Jill

[Guest guest]

In a message dated 9/27/2006 6:28:18 P.M. Eastern Standard Time,

tracey@... writes:

Now, I will

wait and see if it will be used or not. I really hope she tries it,

as I think she will see what a great tool it can be.

If she doesn't use it, then the school district is out of compliance. So, if

she doesn't " try " it soon, then I'd be making noise, and keeping track of

every day it's not used after having been written into the official plan. Wait

and watch is okay for the moment, but if the teacher ignores the equipment for

much longer, then I'd be making some loud noises.

Best -- Jill

[Guest guest]

In a message dated 9/27/2006 7:49:50 P.M. Eastern Standard Time,

tracey@... writes:

I just don't want

everyone crossing the street when they see me coming, like they do

Jill! (just kidding)

Hey, I worked really hard to be this disliked, dare I say " despised " by so

many. It's not easy, ya know, it's taken lots of hard work to get me where I

am today.

LOL!!

Jill

[Guest guest]

Hello Again-

I just wanted to thank everyone again for the replies and ideas. And

let you know that I survived the IEP/504 meeting, although did not get

resolution. As it happens, land law allows that the school system

does not have to accept medical evaluations from " outside " sources, no

matter the quality of that source. So we ordered a new audiology and

speech assessment done by the school system and so are delayed in

making decisions. The special ed representatives did say they see

Ruby as a 504 kid, because she is so bright and not behind

academically. While that is a common arguement, it is clear that IDEA

applies whenever the diability affects learning and provides for

appropriate education, so many courts have held that using simply

academic level is not the issue. What is appropriate education for

Ruby includes more than just being able to score well on their

ratings. She should be progressing consistently and also making gains

in things that are age appropriate like participating and initiating

interaction with peers, gathering skills for independent living, etc.

Really, anything that has a curricular impact relates to learning, it

seems to me. We'll see how it all shakes out, but I was pleased that

the members of the IEP team that were present were very nice to work

with and at least willing to think about my ideas. Of course, the

head of the team was not there (with no prior notification or reason

given), so we'll see how it goes when he arrives at the next meeting

(75 days hence!).

In the meantime, it is an interesting process. When I have new

information about audiology and speech, I am sure I will be back here

looking for more input. Until then, I continue to appreciate reading

all your posts and seeing what a great community of advocates is out

there looking out for their kids.

Thanks again,

, father to Ruby (and Ethan, age 16 months... who is going to

give *me* hearing loss if he doesn't start chilling out soon!)

[Guest guest]

Hi ,

Welcome to the world of the painstakingly slow crawl of dealing with

the school distict. Seems like there are just continuing delays and

testing and indecisiveness, etc.

I too just survived our 504 meeting. Finally, after 6 years, we

have a sound field system written in the 504. I am too thrilled for

words.

We basically reviewed all the tests from last year and determined

that we had no educational delays that would warrant special ed

status, and thus an IEP. I still have some concerns, but over all,

he has progressed in the areas of concern, and his new teacher feels

like he will be just fine. (He is a July 30 baby, so is always the

youngest in his class) So, I am going with that, for the moment.

Most joyfully, I report that he is doing a great job of advocating

for himself in the classroom, choosing seating that allows him oral

access to information, moving to maintain speach reading etc. The

teacher has a workshop model of teaching, which it turns out is just

fabulous for my son, and she uses tons of visual aids when teaching,

as well as writes the homework on the board, and the daily

schedule. She has them do the daily planner writing at the begining

of the day, instead of the end when they are all tired, but my son

exceptionally so. So all in all he is off to a great start.

I have to say, that the teacher has not used the sound field system

yet (45 days after school has started, although it was installed

over the summer, it was not officially in the 504 plan, thus no plan

to show the teacher how it worked) and after discussing all the

succeses my son was having, thought there was no need to use it, nor

write it in the 504 plan. THANKFULLY, our TOD consultant was there,

and she quickly discussed the need for it, to reduce auditory

fatigue, etc. I also produced a copy of Carol Flexer's article for

her to review. The team concurred and wrote it in! Now, I will

wait and see if it will be used or not. I really hope she tries it,

as I think she will see what a great tool it can be.

Anyhow, just thought I would share my 504 experience. Can't say

enough how glad I am to have a Hearing Loss Professional not

employed by the school district to consult and advise.

And a happy new school year to all....

Tracey

>

> Hello Again-

>

> I just wanted to thank everyone again for the replies and ideas.

And

> let you know that I survived the IEP/504 meeting, although did not

get

> resolution. As it happens, land law allows that the school

system

> does not have to accept medical evaluations from " outside "

sources, no

> matter the quality of that source. So we ordered a new audiology

and

> speech assessment done by the school system and so are delayed in

> making decisions. The special ed representatives did say they see

> Ruby as a 504 kid, because she is so bright and not behind

> academically. While that is a common arguement, it is clear that

IDEA

> applies whenever the diability affects learning and provides for

> appropriate education, so many courts have held that using simply

> academic level is not the issue. What is appropriate education for

> Ruby includes more than just being able to score well on their

> ratings. She should be progressing consistently and also making

gains

> in things that are age appropriate like participating and

initiating

> interaction with peers, gathering skills for independent living,

etc.

> Really, anything that has a curricular impact relates to

learning, it

> seems to me. We'll see how it all shakes out, but I was pleased

that

> the members of the IEP team that were present were very nice to

work

> with and at least willing to think about my ideas. Of course, the

> head of the team was not there (with no prior notification or

reason

> given), so we'll see how it goes when he arrives at the next

meeting

> (75 days hence!).

>

> In the meantime, it is an interesting process. When I have new

> information about audiology and speech, I am sure I will be back

here

> looking for more input. Until then, I continue to appreciate

reading

> all your posts and seeing what a great community of advocates is

out

> there looking out for their kids.

>

> Thanks again,

> , father to Ruby (and Ethan, age 16 months... who is going to

> give *me* hearing loss if he doesn't start chilling out soon!)

>

[Guest guest]

Hi ,

Welcome to the world of the painstakingly slow crawl of dealing with

the school distict. Seems like there are just continuing delays and

testing and indecisiveness, etc.

I too just survived our 504 meeting. Finally, after 6 years, we

have a sound field system written in the 504. I am too thrilled for

words.

We basically reviewed all the tests from last year and determined

that we had no educational delays that would warrant special ed

status, and thus an IEP. I still have some concerns, but over all,

he has progressed in the areas of concern, and his new teacher feels

like he will be just fine. (He is a July 30 baby, so is always the

youngest in his class) So, I am going with that, for the moment.

Most joyfully, I report that he is doing a great job of advocating

for himself in the classroom, choosing seating that allows him oral

access to information, moving to maintain speach reading etc. The

teacher has a workshop model of teaching, which it turns out is just

fabulous for my son, and she uses tons of visual aids when teaching,

as well as writes the homework on the board, and the daily

schedule. She has them do the daily planner writing at the begining

of the day, instead of the end when they are all tired, but my son

exceptionally so. So all in all he is off to a great start.

I have to say, that the teacher has not used the sound field system

yet (45 days after school has started, although it was installed

over the summer, it was not officially in the 504 plan, thus no plan

to show the teacher how it worked) and after discussing all the

succeses my son was having, thought there was no need to use it, nor

write it in the 504 plan. THANKFULLY, our TOD consultant was there,

and she quickly discussed the need for it, to reduce auditory

fatigue, etc. I also produced a copy of Carol Flexer's article for

her to review. The team concurred and wrote it in! Now, I will

wait and see if it will be used or not. I really hope she tries it,

as I think she will see what a great tool it can be.

Anyhow, just thought I would share my 504 experience. Can't say

enough how glad I am to have a Hearing Loss Professional not

employed by the school district to consult and advise.

And a happy new school year to all....

Tracey

>

> Hello Again-

>

> I just wanted to thank everyone again for the replies and ideas.

And

> let you know that I survived the IEP/504 meeting, although did not

get

> resolution. As it happens, land law allows that the school

system

> does not have to accept medical evaluations from " outside "

sources, no

> matter the quality of that source. So we ordered a new audiology

and

> speech assessment done by the school system and so are delayed in

> making decisions. The special ed representatives did say they see

> Ruby as a 504 kid, because she is so bright and not behind

> academically. While that is a common arguement, it is clear that

IDEA

> applies whenever the diability affects learning and provides for

> appropriate education, so many courts have held that using simply

> academic level is not the issue. What is appropriate education for

> Ruby includes more than just being able to score well on their

> ratings. She should be progressing consistently and also making

gains

> in things that are age appropriate like participating and

initiating

> interaction with peers, gathering skills for independent living,

etc.

> Really, anything that has a curricular impact relates to

learning, it

> seems to me. We'll see how it all shakes out, but I was pleased

that

> the members of the IEP team that were present were very nice to

work

> with and at least willing to think about my ideas. Of course, the

> head of the team was not there (with no prior notification or

reason

> given), so we'll see how it goes when he arrives at the next

meeting

> (75 days hence!).

>

> In the meantime, it is an interesting process. When I have new

> information about audiology and speech, I am sure I will be back

here

> looking for more input. Until then, I continue to appreciate

reading

> all your posts and seeing what a great community of advocates is

out

> there looking out for their kids.

>

> Thanks again,

> , father to Ruby (and Ethan, age 16 months... who is going to

> give *me* hearing loss if he doesn't start chilling out soon!)

>