intro from Trish and Bobby...need help and friendship

[Guest guest]

I hardly know where to start. My life has been a whirlwind for the last 6

years.

My little boy is now 6, but his hearing impairment was just discovered in

October. (Even though I have been telling the school system for 3 years now

that he says " what? " to me over and over. They told me it was just his " lousy "

attention span and that if I ignored him, he'd stop. Don't even get me

started...) It appears that he has been hearing impaired since 3 months old,

but no one knew that. His main problem is that he was born with a single

ventricle heart defect, and he has had 4 open heart surgeries. During the one

he had when he was three months old, he went into renal failure and received two

ototoxic meds. Apparently, these two meds plus the renal failure itself were

three strikes against him, and he lost some of his hearing, though like I said,

we don't know how much. He learned to speak, but has delays, but given that he

spent three months in ICU critical every day and we'd never knew if he'd come

home alive, his speech was pretty good. That's what stumped everyone.

Fast forward to last May and he had his 4th open heart surgery. He again went

into renal failure, and was given another ototoxic med. This one must have made

a big difference in his ability to hear, because after he went back to school,

when I told the teachers that he kept saying " what? " , they finally did a hearing

test and saw that it was abnormal. But, they told me, these results are always

unreliable. We had three abnormal " unreliable " test before I said, look

something's up here, and scheduled him to go to Yale for a real test. Sure

enough, he had a moderate to severe loss in his right ear, and his left has a

high frequency loss where he can not hear s, f, and th. Possibly k and t also.

He got a hearing aid for his " bad " ear in Oct, and since no one told me that we

now have to train his brain to " hear " and accept auditory input, and that the

hearing aid should be worn every waking hour, I'd put it in only when he went to

school. Every time he fought me, I'd give in and tell him it was his " day off " .

I had no idea his brain didn't know how to " hear " . I finally went to a seminar

about auditory input and brain development about 2 months ago, and left saying,

" OMG, why didn't anyone tell me this. We have not caught this at all when his

brain was at the crucial time for developing speech and comprehension, and no

one told me. " So from that day on, he had his hearing aid in every waking

minute.

Then a few weeks later, I went to a seminar on cognition and the hearing

impaired child, and learned how so many of these kids get pegged with learning

disabilities when it is really a comprehension issue from their hearing

impairment. Well, that hit the nail on the head for Bobby. We had just had a

PPT (to arrange Bobby's IEP for next school year) and the educational

audiologist just sat there and didn't tell anyone that Bobby needed specialized

instruction, even though his comprehension scores fell below the norm by 2 years

this past year. She just sat there silent. And this is supposed to be someone

who is advocating for Bobby. He is supposed to go to regular kindergarten next

year and have a resource teacher a few hours a week. That's it. I am pushing

for a comprehensive evaluation to be done by a School for the Deaf and Hard of

Hearing, but no one is getting back to me and basically I am being ignored. To

top that off, someone I spoke to from a deaf school took one look at Bobby's

audiogram and told me that he doesn't have a " unilateral loss " , like I had been

told, but that both his ears don't hear well and he would benefit from a second

hearing aid to amplify those sounds he can't hear. Why didn't anyone suggest

this 8 months ago? She also suggested AV therapy, and that he needs catch up

work to bring him up to speed. No one said any of this before. When I brought

this up to the person in charge of decisions about services for special needs

kids in our school district, she said that I should be careful about taking

recommendations from " strangers who don't know him " . But I said in response,

that these people eat, sleep and breathe hearing impairment, and if I can't

trust them, who can I trust. Her school staff obviously doesn't know what they

are doing, because the day before I took him to Yale to get him tested in a

real soundproof room by professionals, the speech teacher at his school had told

me that he is not the kind of kid who will need hearing aids because he " speaks

too well " , and if it's anything, " he probably has fluid in his ears " . The next

day I wind up coming home with hearing aids. So much for them knowing what they

are doing.

The person in charge of Special Services said to me, " So you're taking this

hearing impairment as a primary disability then? " I said, " Well, yes. " What am

I supposed to think unless we have a screening done by professionals who say

otherwise. So now I wait for something to be scheduled and approved, so that I

can even see if the summer programs we have set up for him, and the support

services we have in place for kindergarten next year, are even appropriate.

It's been the worst month of my life trying to deal with the red tape and no one

calling me back.

To top that off, 2 weeks ago I was coming home from Yale after spending almost 2

hours there working with an audiologist who couldn't get the phonak FM system we

had just purchased to talk to the Oticon hearing aid. The audiologist admitted

herself that she doesn't do much work with FMs. We left there with a useless

$2000 piece of equipment that no one could tell me how to use. Then on the way

home, with all four kids in the car, someone lost the use of his breaks backing

down his steep driveway and smashed right into the side of my car, destroying

both the passenger and driver's doors. Everyone had on seatbelts so we were all

OK. It was totally his fault.

Yesterday, I was driving up to e School for the Deaf and Hard of Hearing in

Mass. to see what it was like, just to get information, and I am driving a

rental car while mine is still being fixed. The guy behind me is right up my

tail, I slowed down because the person in front of me did too, I had a nice

distance between them and me, but the car behind me never stopped and rammed

into the back of the rental and destroyed the rear end and shattered the back

window. Then the impact threw my car into the right lane where a tractor

trailer smashed into the other side of the back, finishing off what was left of

the rear end, and spun me around until I wound up in the grass on the side. I

sat there for 15 minutes just shaking.

I still have no support for the FM, and I don't know how to use it. I had to

threaten certain people at Yale after waiting over a month to finally get the

second hearing aid ordered, the place the school system works with to consult

for Hearing Impaired kids doesn't call me back, and the school system is totally

ignorant of what they don't know. I am ready to move to MA. just to get Bobby

into a decent school. But then I'd be yanking my other three kids out of school

when I just placed them in there after not being able to keep up with

homeschooling. It has been one battle after another.

So I joined this list with the hope that maybe you guys could help me out. I

have been on tube feeding listserves and I did most of the answering there, so I

know what it's like to post answer after answer the same question, and I thank

you in advance for taking the time from your busy lives to help me with my

struggle to figure out how I live with this. I have also been the one who

helped many moms on another list who were pumping breastmilk for their babies,

and again, I spent countless hours answering the same questions over and over.

So know that any post and guidance you give me is very much appreciated...it is

humbling to be on this side of the fence for once. In time, I hope to know

enough to help someone else out.

My little man is quite a popular guy and has been written up in several papers,

in journals and the ls of Thoracic Surgery, after my husband devised a way

to centrifuge the fat out of my breastmilk in order to give Bobby human skim

milk for a complication he had after surgery. Cardiac wise he is doing very

well and I thought I was finally done with all of this, and then I got hit with

the hearing loss. Sometimes it seems like this will never end, but I have to

put it in perspective and say last year at this time he was fighting to stay

alive, and at least this is not his heart. Sometimes it's hard to keep in that

positive place, though.

If you're interested and have been able to stick with this post for this long,

here are the links to three newspaper articles published about him. They kind

of sum up where we've been. Thank you for the acceptance to your list and for

being comrades in this journey, because I'll tell you quite honestly, it's felt

pretty lonely lately.

http://www.zwire.com/site/news.cfm?newsid=13636311 & BRD=1380 & PAG=461 & dept_id=1575\

25 & rfi=6

http://www.zwire.com/site/news.cfm?newsid=15786557 & BRD=1380 & PAG=461 & dept_id=1575\

25 & rfi=6

Trish Whitehouse, mom to Bobby Zabarsky, my little miracle man and hero.

[Guest guest]

Welcome Trish. I wish I had advice for you, but all I can offer is friendship.

Bobby looks like an absolute doll! I can sympathize with you on the FM

woes....if it wasn't for (7) having an absolutely amazing teacher who

spent no less than four hours in one sitting on the phone with Phonak, we never

would've had a working system. No one in the Child Study Team know how to use

it, and they basically just threw it at the teachers and told them to figure it

out. He has Oticon aids, too, and our Audiologist kept telling us we needed to

send the aids back to Phonak with the system and they needed to trouble shoot

them TOGETHER, but the school system wouldn't allow us to take the FM system so

the audi could send them together and they weren't willing to take

responsibility for his hearing aids to send them with the system. It was a long

mess that drug on for over a year and a half. And of course, within a month of

finally getting the system to work the way it should,

he lost one of the boots. Now I'm fighting to get that replaced!!!!

Cherie

Trish Whitehouse wrote:

I hardly know where to start. My life has been a whirlwind for the last 6

years.

My little boy is now 6, but his hearing impairment was just discovered in

October. (Even though I have been telling the school system for 3 years now

that he says " what? " to me over and over. They told me it was just his " lousy "

attention span and that if I ignored him, he'd stop. Don't even get me

started...) It appears that he has been hearing impaired since 3 months old,

but no one knew that. His main problem is that he was born with a single

ventricle heart defect, and he has had 4 open heart surgeries. During the one

he had when he was three months old, he went into renal failure and received two

ototoxic meds. Apparently, these two meds plus the renal failure itself were

three strikes against him, and he lost some of his hearing, though like I said,

we don't know how much. He learned to speak, but has delays, but given that he

spent three months in ICU critical every day and we'd never knew if he'd come

home alive, his speech was pretty good. That's what

stumped everyone.

Fast forward to last May and he had his 4th open heart surgery. He again went

into renal failure, and was given another ototoxic med. This one must have made

a big difference in his ability to hear, because after he went back to school,

when I told the teachers that he kept saying " what? " , they finally did a hearing

test and saw that it was abnormal. But, they told me, these results are always

unreliable. We had three abnormal " unreliable " test before I said, look

something's up here, and scheduled him to go to Yale for a real test. Sure

enough, he had a moderate to severe loss in his right ear, and his left has a

high frequency loss where he can not hear s, f, and th. Possibly k and t also.

He got a hearing aid for his " bad " ear in Oct, and since no one told me that we

now have to train his brain to " hear " and accept auditory input, and that the

hearing aid should be worn every waking hour, I'd put it in only when he went to

school. Every time he fought me, I'd give in and tell him it was his " day off " .

I had no idea his brain didn't know how to " hear " . I finally went to a seminar

about auditory input and brain development about 2 months ago, and left saying,

" OMG, why didn't anyone tell me this. We have not caught this at all when his

brain was at the crucial time for developing speech and comprehension, and no

one told me. " So from that day on, he had his hearing aid in every waking

minute.

Then a few weeks later, I went to a seminar on cognition and the hearing

impaired child, and learned how so many of these kids get pegged with learning

disabilities when it is really a comprehension issue from their hearing

impairment. Well, that hit the nail on the head for Bobby. We had just had a

PPT (to arrange Bobby's IEP for next school year) and the educational

audiologist just sat there and didn't tell anyone that Bobby needed specialized

instruction, even though his comprehension scores fell below the norm by 2 years

this past year. She just sat there silent. And this is supposed to be someone

who is advocating for Bobby. He is supposed to go to regular kindergarten next

year and have a resource teacher a few hours a week. That's it. I am pushing

for a comprehensive evaluation to be done by a School for the Deaf and Hard of

Hearing, but no one is getting back to me and basically I am being ignored. To

top that off, someone I spoke to from a deaf school

took one look at Bobby's audiogram and told me that he doesn't have a

" unilateral loss " , like I had been told, but that both his ears don't hear well

and he would benefit from a second hearing aid to amplify those sounds he can't

hear. Why didn't anyone suggest this 8 months ago? She also suggested AV

therapy, and that he needs catch up work to bring him up to speed. No one said

any of this before. When I brought this up to the person in charge of decisions

about services for special needs kids in our school district, she said that I

should be careful about taking recommendations from " strangers who don't know

him " . But I said in response, that these people eat, sleep and breathe hearing

impairment, and if I can't trust them, who can I trust. Her school staff

obviously doesn't know what they are doing, because the day before I took him to

Yale to get him tested in a real soundproof room by professionals, the speech

teacher at his school had told me that he is not

the kind of kid who will need hearing aids because he " speaks too well " , and if

it's anything, " he probably has fluid in his ears " . The next day I wind up

coming home with hearing aids. So much for them knowing what they are doing.

The person in charge of Special Services said to me, " So you're taking this

hearing impairment as a primary disability then? " I said, " Well, yes. " What am

I supposed to think unless we have a screening done by professionals who say

otherwise. So now I wait for something to be scheduled and approved, so that I

can even see if the summer programs we have set up for him, and the support

services we have in place for kindergarten next year, are even appropriate.

It's been the worst month of my life trying to deal with the red tape and no one

calling me back.

To top that off, 2 weeks ago I was coming home from Yale after spending almost 2

hours there working with an audiologist who couldn't get the phonak FM system we

had just purchased to talk to the Oticon hearing aid. The audiologist admitted

herself that she doesn't do much work with FMs. We left there with a useless

$2000 piece of equipment that no one could tell me how to use. Then on the way

home, with all four kids in the car, someone lost the use of his breaks backing

down his steep driveway and smashed right into the side of my car, destroying

both the passenger and driver's doors. Everyone had on seatbelts so we were all

OK. It was totally his fault.

Yesterday, I was driving up to e School for the Deaf and Hard of Hearing in

Mass. to see what it was like, just to get information, and I am driving a

rental car while mine is still being fixed. The guy behind me is right up my

tail, I slowed down because the person in front of me did too, I had a nice

distance between them and me, but the car behind me never stopped and rammed

into the back of the rental and destroyed the rear end and shattered the back

window. Then the impact threw my car into the right lane where a tractor

trailer smashed into the other side of the back, finishing off what was left of

the rear end, and spun me around until I wound up in the grass on the side. I

sat there for 15 minutes just shaking.

I still have no support for the FM, and I don't know how to use it. I had to

threaten certain people at Yale after waiting over a month to finally get the

second hearing aid ordered, the place the school system works with to consult

for Hearing Impaired kids doesn't call me back, and the school system is totally

ignorant of what they don't know. I am ready to move to MA. just to get Bobby

into a decent school. But then I'd be yanking my other three kids out of school

when I just placed them in there after not being able to keep up with

homeschooling. It has been one battle after another.

So I joined this list with the hope that maybe you guys could help me out. I

have been on tube feeding listserves and I did most of the answering there, so I

know what it's like to post answer after answer the same question, and I thank

you in advance for taking the time from your busy lives to help me with my

struggle to figure out how I live with this. I have also been the one who

helped many moms on another list who were pumping breastmilk for their babies,

and again, I spent countless hours answering the same questions over and over.

So know that any post and guidance you give me is very much appreciated...it is

humbling to be on this side of the fence for once. In time, I hope to know

enough to help someone else out.

My little man is quite a popular guy and has been written up in several papers,

in journals and the ls of Thoracic Surgery, after my husband devised a way

to centrifuge the fat out of my breastmilk in order to give Bobby human skim

milk for a complication he had after surgery. Cardiac wise he is doing very

well and I thought I was finally done with all of this, and then I got hit with

the hearing loss. Sometimes it seems like this will never end, but I have to

put it in perspective and say last year at this time he was fighting to stay

alive, and at least this is not his heart. Sometimes it's hard to keep in that

positive place, though.

If you're interested and have been able to stick with this post for this long,

here are the links to three newspaper articles published about him. They kind

of sum up where we've been. Thank you for the acceptance to your list and for

being comrades in this journey, because I'll tell you quite honestly, it's felt

pretty lonely lately.

http://www.zwire.com/site/news.cfm?newsid=13636311 & BRD=1380 & PAG=461 & dept_id=1575\

25 & rfi=6

http://www.zwire.com/site/news.cfm?newsid=15786557 & BRD=1380 & PAG=461 & dept_id=1575\

25 & rfi=6

Trish Whitehouse, mom to Bobby Zabarsky, my little miracle man and hero.

[Guest guest]

Welcome Trish. I wish I had advice for you, but all I can offer is friendship.

Bobby looks like an absolute doll! I can sympathize with you on the FM

woes....if it wasn't for (7) having an absolutely amazing teacher who

spent no less than four hours in one sitting on the phone with Phonak, we never

would've had a working system. No one in the Child Study Team know how to use

it, and they basically just threw it at the teachers and told them to figure it

out. He has Oticon aids, too, and our Audiologist kept telling us we needed to

send the aids back to Phonak with the system and they needed to trouble shoot

them TOGETHER, but the school system wouldn't allow us to take the FM system so

the audi could send them together and they weren't willing to take

responsibility for his hearing aids to send them with the system. It was a long

mess that drug on for over a year and a half. And of course, within a month of

finally getting the system to work the way it should,

he lost one of the boots. Now I'm fighting to get that replaced!!!!

Cherie

Trish Whitehouse wrote:

I hardly know where to start. My life has been a whirlwind for the last 6

years.

My little boy is now 6, but his hearing impairment was just discovered in

October. (Even though I have been telling the school system for 3 years now

that he says " what? " to me over and over. They told me it was just his " lousy "

attention span and that if I ignored him, he'd stop. Don't even get me

started...) It appears that he has been hearing impaired since 3 months old,

but no one knew that. His main problem is that he was born with a single

ventricle heart defect, and he has had 4 open heart surgeries. During the one

he had when he was three months old, he went into renal failure and received two

ototoxic meds. Apparently, these two meds plus the renal failure itself were

three strikes against him, and he lost some of his hearing, though like I said,

we don't know how much. He learned to speak, but has delays, but given that he

spent three months in ICU critical every day and we'd never knew if he'd come

home alive, his speech was pretty good. That's what

stumped everyone.

Fast forward to last May and he had his 4th open heart surgery. He again went

into renal failure, and was given another ototoxic med. This one must have made

a big difference in his ability to hear, because after he went back to school,

when I told the teachers that he kept saying " what? " , they finally did a hearing

test and saw that it was abnormal. But, they told me, these results are always

unreliable. We had three abnormal " unreliable " test before I said, look

something's up here, and scheduled him to go to Yale for a real test. Sure

enough, he had a moderate to severe loss in his right ear, and his left has a

high frequency loss where he can not hear s, f, and th. Possibly k and t also.

He got a hearing aid for his " bad " ear in Oct, and since no one told me that we

now have to train his brain to " hear " and accept auditory input, and that the

hearing aid should be worn every waking hour, I'd put it in only when he went to

school. Every time he fought me, I'd give in and tell him it was his " day off " .

I had no idea his brain didn't know how to " hear " . I finally went to a seminar

about auditory input and brain development about 2 months ago, and left saying,

" OMG, why didn't anyone tell me this. We have not caught this at all when his

brain was at the crucial time for developing speech and comprehension, and no

one told me. " So from that day on, he had his hearing aid in every waking

minute.

Then a few weeks later, I went to a seminar on cognition and the hearing

impaired child, and learned how so many of these kids get pegged with learning

disabilities when it is really a comprehension issue from their hearing

impairment. Well, that hit the nail on the head for Bobby. We had just had a

PPT (to arrange Bobby's IEP for next school year) and the educational

audiologist just sat there and didn't tell anyone that Bobby needed specialized

instruction, even though his comprehension scores fell below the norm by 2 years

this past year. She just sat there silent. And this is supposed to be someone

who is advocating for Bobby. He is supposed to go to regular kindergarten next

year and have a resource teacher a few hours a week. That's it. I am pushing

for a comprehensive evaluation to be done by a School for the Deaf and Hard of

Hearing, but no one is getting back to me and basically I am being ignored. To

top that off, someone I spoke to from a deaf school

took one look at Bobby's audiogram and told me that he doesn't have a

" unilateral loss " , like I had been told, but that both his ears don't hear well

and he would benefit from a second hearing aid to amplify those sounds he can't

hear. Why didn't anyone suggest this 8 months ago? She also suggested AV

therapy, and that he needs catch up work to bring him up to speed. No one said

any of this before. When I brought this up to the person in charge of decisions

about services for special needs kids in our school district, she said that I

should be careful about taking recommendations from " strangers who don't know

him " . But I said in response, that these people eat, sleep and breathe hearing

impairment, and if I can't trust them, who can I trust. Her school staff

obviously doesn't know what they are doing, because the day before I took him to

Yale to get him tested in a real soundproof room by professionals, the speech

teacher at his school had told me that he is not

the kind of kid who will need hearing aids because he " speaks too well " , and if

it's anything, " he probably has fluid in his ears " . The next day I wind up

coming home with hearing aids. So much for them knowing what they are doing.

The person in charge of Special Services said to me, " So you're taking this

hearing impairment as a primary disability then? " I said, " Well, yes. " What am

I supposed to think unless we have a screening done by professionals who say

otherwise. So now I wait for something to be scheduled and approved, so that I

can even see if the summer programs we have set up for him, and the support

services we have in place for kindergarten next year, are even appropriate.

It's been the worst month of my life trying to deal with the red tape and no one

calling me back.

To top that off, 2 weeks ago I was coming home from Yale after spending almost 2

hours there working with an audiologist who couldn't get the phonak FM system we

had just purchased to talk to the Oticon hearing aid. The audiologist admitted

herself that she doesn't do much work with FMs. We left there with a useless

$2000 piece of equipment that no one could tell me how to use. Then on the way

home, with all four kids in the car, someone lost the use of his breaks backing

down his steep driveway and smashed right into the side of my car, destroying

both the passenger and driver's doors. Everyone had on seatbelts so we were all

OK. It was totally his fault.

Yesterday, I was driving up to e School for the Deaf and Hard of Hearing in

Mass. to see what it was like, just to get information, and I am driving a

rental car while mine is still being fixed. The guy behind me is right up my

tail, I slowed down because the person in front of me did too, I had a nice

distance between them and me, but the car behind me never stopped and rammed

into the back of the rental and destroyed the rear end and shattered the back

window. Then the impact threw my car into the right lane where a tractor

trailer smashed into the other side of the back, finishing off what was left of

the rear end, and spun me around until I wound up in the grass on the side. I

sat there for 15 minutes just shaking.

I still have no support for the FM, and I don't know how to use it. I had to

threaten certain people at Yale after waiting over a month to finally get the

second hearing aid ordered, the place the school system works with to consult

for Hearing Impaired kids doesn't call me back, and the school system is totally

ignorant of what they don't know. I am ready to move to MA. just to get Bobby

into a decent school. But then I'd be yanking my other three kids out of school

when I just placed them in there after not being able to keep up with

homeschooling. It has been one battle after another.

So I joined this list with the hope that maybe you guys could help me out. I

have been on tube feeding listserves and I did most of the answering there, so I

know what it's like to post answer after answer the same question, and I thank

you in advance for taking the time from your busy lives to help me with my

struggle to figure out how I live with this. I have also been the one who

helped many moms on another list who were pumping breastmilk for their babies,

and again, I spent countless hours answering the same questions over and over.

So know that any post and guidance you give me is very much appreciated...it is

humbling to be on this side of the fence for once. In time, I hope to know

enough to help someone else out.

My little man is quite a popular guy and has been written up in several papers,

in journals and the ls of Thoracic Surgery, after my husband devised a way

to centrifuge the fat out of my breastmilk in order to give Bobby human skim

milk for a complication he had after surgery. Cardiac wise he is doing very

well and I thought I was finally done with all of this, and then I got hit with

the hearing loss. Sometimes it seems like this will never end, but I have to

put it in perspective and say last year at this time he was fighting to stay

alive, and at least this is not his heart. Sometimes it's hard to keep in that

positive place, though.

If you're interested and have been able to stick with this post for this long,

here are the links to three newspaper articles published about him. They kind

of sum up where we've been. Thank you for the acceptance to your list and for

being comrades in this journey, because I'll tell you quite honestly, it's felt

pretty lonely lately.

http://www.zwire.com/site/news.cfm?newsid=13636311 & BRD=1380 & PAG=461 & dept_id=1575\

25 & rfi=6

http://www.zwire.com/site/news.cfm?newsid=15786557 & BRD=1380 & PAG=461 & dept_id=1575\

25 & rfi=6

Trish Whitehouse, mom to Bobby Zabarsky, my little miracle man and hero.

[Guest guest]

Trish,

I have to tell you that it could get worse! I know how you are feeling right

now! I can honestly say that it will get better. I promise you that. At least

that is what i keep telling myself! We all have our crosses to bear and it seems

like when it rains it pours and pours.

Hello...I am Keisha, mother of 10 year old with a unilateral loss in Southern

California. My son was diagnosed last year and had sugery here in Feb. Now we

are dealing with how to get the other part that goes with his hearing aid. You

see, here is my story...i left one job to go to one that I thought was perfect.

It turns out that it wasnt...so i was terminated-well i said i wanted the paper

work to SAY i was terminated so at least i could get some unemployment while i

looked for something else...well that killed the health insurance for my son

that WAS going to cover the external portion of the aid that costs 3 grand....3

grand that i dont have...so now i have to call the California Child Services to

see if they will take care of at least that part until i get on my feet!!! Did i

mention that i am also a single mom? Well, in the process of all of this, CAR

TROUBLES...imagine my panic!!! By the grace of God that was taken care of and it

didnt cost too too much! That was a

relief to allow me to worry about something else...

I dont know if you are a praying woman but i surely am...it takes all that i

have not to try and commit suicide these past few days...lol...but hey i am

hanging in there with as much strength as i can muster...so you can and should

do the same....I know you can do it...we are strong my default and if you have

some support, now is the time to call upon it! What keeps me going is my

son...every time i look at him, i get the strength i need to keep going.

Unfortunately, for me, I dont have too much of a support system...my mother

passed and my family is 3000 miles away and there is no significant other

.....soo...my prayer and many nights of hot baths and relaxation candles have to

do the trick....all i can say and offer is my support...you hang in there!!! You

can do this...and the aloneness will go away...at least it does

sometimes...peace and blessings to you...

K

Trish Whitehouse wrote:

I hardly know where to start. My life has been a whirlwind for the last 6

years.

My little boy is now 6, but his hearing impairment was just discovered in

October. (Even though I have been telling the school system for 3 years now

that he says " what? " to me over and over. They told me it was just his " lousy "

attention span and that if I ignored him, he'd stop. Don't even get me

started...) It appears that he has been hearing impaired since 3 months old,

but no one knew that. His main problem is that he was born with a single

ventricle heart defect, and he has had 4 open heart surgeries. During the one

he had when he was three months old, he went into renal failure and received two

ototoxic meds. Apparently, these two meds plus the renal failure itself were

three strikes against him, and he lost some of his hearing, though like I said,

we don't know how much. He learned to speak, but has delays, but given that he

spent three months in ICU critical every day and we'd never knew if he'd come

home alive, his speech was pretty good. That's what

stumped everyone.

Fast forward to last May and he had his 4th open heart surgery. He again went

into renal failure, and was given another ototoxic med. This one must have made

a big difference in his ability to hear, because after he went back to school,

when I told the teachers that he kept saying " what? " , they finally did a hearing

test and saw that it was abnormal. But, they told me, these results are always

unreliable. We had three abnormal " unreliable " test before I said, look

something's up here, and scheduled him to go to Yale for a real test. Sure

enough, he had a moderate to severe loss in his right ear, and his left has a

high frequency loss where he can not hear s, f, and th. Possibly k and t also.

He got a hearing aid for his " bad " ear in Oct, and since no one told me that we

now have to train his brain to " hear " and accept auditory input, and that the

hearing aid should be worn every waking hour, I'd put it in only when he went to

school. Every time he fought me, I'd give in and tell him it was his " day off " .

I had no idea his brain didn't know how to " hear " . I finally went to a seminar

about auditory input and brain development about 2 months ago, and left saying,

" OMG, why didn't anyone tell me this. We have not caught this at all when his

brain was at the crucial time for developing speech and comprehension, and no

one told me. " So from that day on, he had his hearing aid in every waking

minute.

Then a few weeks later, I went to a seminar on cognition and the hearing

impaired child, and learned how so many of these kids get pegged with learning

disabilities when it is really a comprehension issue from their hearing

impairment. Well, that hit the nail on the head for Bobby. We had just had a

PPT (to arrange Bobby's IEP for next school year) and the educational

audiologist just sat there and didn't tell anyone that Bobby needed specialized

instruction, even though his comprehension scores fell below the norm by 2 years

this past year. She just sat there silent. And this is supposed to be someone

who is advocating for Bobby. He is supposed to go to regular kindergarten next

year and have a resource teacher a few hours a week. That's it. I am pushing

for a comprehensive evaluation to be done by a School for the Deaf and Hard of

Hearing, but no one is getting back to me and basically I am being ignored. To

top that off, someone I spoke to from a deaf school

took one look at Bobby's audiogram and told me that he doesn't have a

" unilateral loss " , like I had been told, but that both his ears don't hear well

and he would benefit from a second hearing aid to amplify those sounds he can't

hear. Why didn't anyone suggest this 8 months ago? She also suggested AV

therapy, and that he needs catch up work to bring him up to speed. No one said

any of this before. When I brought this up to the person in charge of decisions

about services for special needs kids in our school district, she said that I

should be careful about taking recommendations from " strangers who don't know

him " . But I said in response, that these people eat, sleep and breathe hearing

impairment, and if I can't trust them, who can I trust. Her school staff

obviously doesn't know what they are doing, because the day before I took him to

Yale to get him tested in a real soundproof room by professionals, the speech

teacher at his school had told me that he is not

the kind of kid who will need hearing aids because he " speaks too well " , and if

it's anything, " he probably has fluid in his ears " . The next day I wind up

coming home with hearing aids. So much for them knowing what they are doing.

The person in charge of Special Services said to me, " So you're taking this

hearing impairment as a primary disability then? " I said, " Well, yes. " What am

I supposed to think unless we have a screening done by professionals who say

otherwise. So now I wait for something to be scheduled and approved, so that I

can even see if the summer programs we have set up for him, and the support

services we have in place for kindergarten next year, are even appropriate.

It's been the worst month of my life trying to deal with the red tape and no one

calling me back.

To top that off, 2 weeks ago I was coming home from Yale after spending almost 2

hours there working with an audiologist who couldn't get the phonak FM system we

had just purchased to talk to the Oticon hearing aid. The audiologist admitted

herself that she doesn't do much work with FMs. We left there with a useless

$2000 piece of equipment that no one could tell me how to use. Then on the way

home, with all four kids in the car, someone lost the use of his breaks backing

down his steep driveway and smashed right into the side of my car, destroying

both the passenger and driver's doors. Everyone had on seatbelts so we were all

OK. It was totally his fault.

Yesterday, I was driving up to e School for the Deaf and Hard of Hearing in

Mass. to see what it was like, just to get information, and I am driving a

rental car while mine is still being fixed. The guy behind me is right up my

tail, I slowed down because the person in front of me did too, I had a nice

distance between them and me, but the car behind me never stopped and rammed

into the back of the rental and destroyed the rear end and shattered the back

window. Then the impact threw my car into the right lane where a tractor

trailer smashed into the other side of the back, finishing off what was left of

the rear end, and spun me around until I wound up in the grass on the side. I

sat there for 15 minutes just shaking.

I still have no support for the FM, and I don't know how to use it. I had to

threaten certain people at Yale after waiting over a month to finally get the

second hearing aid ordered, the place the school system works with to consult

for Hearing Impaired kids doesn't call me back, and the school system is totally

ignorant of what they don't know. I am ready to move to MA. just to get Bobby

into a decent school. But then I'd be yanking my other three kids out of school

when I just placed them in there after not being able to keep up with

homeschooling. It has been one battle after another.

So I joined this list with the hope that maybe you guys could help me out. I

have been on tube feeding listserves and I did most of the answering there, so I

know what it's like to post answer after answer the same question, and I thank

you in advance for taking the time from your busy lives to help me with my

struggle to figure out how I live with this. I have also been the one who

helped many moms on another list who were pumping breastmilk for their babies,

and again, I spent countless hours answering the same questions over and over.

So know that any post and guidance you give me is very much appreciated...it is

humbling to be on this side of the fence for once. In time, I hope to know

enough to help someone else out.

My little man is quite a popular guy and has been written up in several papers,

in journals and the ls of Thoracic Surgery, after my husband devised a way

to centrifuge the fat out of my breastmilk in order to give Bobby human skim

milk for a complication he had after surgery. Cardiac wise he is doing very

well and I thought I was finally done with all of this, and then I got hit with

the hearing loss. Sometimes it seems like this will never end, but I have to

put it in perspective and say last year at this time he was fighting to stay

alive, and at least this is not his heart. Sometimes it's hard to keep in that

positive place, though.

If you're interested and have been able to stick with this post for this long,

here are the links to three newspaper articles published about him. They kind

of sum up where we've been. Thank you for the acceptance to your list and for

being comrades in this journey, because I'll tell you quite honestly, it's felt

pretty lonely lately.

http://www.zwire.com/site/news.cfm?newsid=13636311 & BRD=1380 & PAG=461 & dept_id=1575\

25 & rfi=6

http://www.zwire.com/site/news.cfm?newsid=15786557 & BRD=1380 & PAG=461 & dept_id=1575\

25 & rfi=6

Trish Whitehouse, mom to Bobby Zabarsky, my little miracle man and hero.

[Guest guest]

In a message dated 5/5/2006 10:47:45 P.M. Eastern Daylight Time,

chester2001@... writes:

To top that off, someone I spoke to from a deaf school took one look at

Bobby's audiogram and told me that he doesn't have a " unilateral loss " , like I

had been told, but that both his ears don't hear well and he would benefit from

a second hearing aid to amplify those sounds he can't hear. Why didn't

anyone suggest this 8 months ago? She also suggested AV therapy, and that he

needs catch up work to bring him up to speed. No one said any of this before.

When I brought this up to the person in charge of decisions about services

for special needs kids in our school district, she said that I should be

careful about taking recommendations from " strangers who don't know him " . But

I

said in response, that these people eat, sleep and breathe hearing impairment,

and if I can't trust them, who can I trust.

Exactly ... and that is why you'll find out that many of us here have taken

our kids to the local deaf school for evaluations. Sometimes " total strangers "

are the best people to help. I learned everything I know about hearing loss

and how to help my son from generous and wonderfully patient " total

strangers. " The local school had never had a D/HOH student who wasn't multiply

handicapped and lied regularly about what options could or should be available

for

our son. Strangers were far more helpful, and several of them are now

friends.

You have certainly been through the ringer and the good new is that you keep

finding your way though the mess to get better answers. Stubbornness can be

a good thing (grin) Congratulations, that's not an easy task and you should

take pride in it.

Welcome to the list. I am Jill, mom to a 15-year-old son, Ian, who has a

progressive bilateral loss, currently in the moderate range. Ian was not

diagnosed until he was 7 and his verbal and lip reading skills helped fool us

all.

He even lip read his way through his first booth tests with an absolutely

hideous audiologist.

When this all started for us, we had a misdiagnosis of a very mild hearing

loss from that bad audi. We are a hearing family who knew nothing about hearing

loss and so it was all new and I didn't even know what questions I should

ask. We stumbled the way you have, being lied to and misled by our school

district but eventually we found the right answers and solutions. Believe us

when

we tell you that you can also manage this! You've already started.

<<Her school staff obviously doesn't know what they are doing, because the

day before I took him to Yale to get him tested in a real soundproof room by

professionals, the speech teacher at his school had told me that he is not

the kind of kid who will need hearing aids because he " speaks too well " , and if

it's anything, " he probably has fluid in his ears " . >>

And now you know how much you CAN " T rely on her or the school's

professionals for any valuable input. I would simply dismiss her and not take

what she

has to say seriously. If you need a speech evaluation, get one from or

the deaf school near you. Your district will rely on her for " professional "

input, but I would seek out someone else so that you have a private eval to put

up against whatever she bring to the meetings.

We still have people who don't believe that Ian has a " serious " hearing loss

because he speaks so clearly. When we went to Montefiore last time, their

audiologist spoke with him a bit before doing the booth test and afterwards

commented in surprised tones about his verbal skills and clarity, complimenting

him. He does have really clear speech, but that doesn't negate his loss, it

just masks it. Ian's loss is post lingual and it's conductive so there isn't

the sound distortion that often comes with an SNL. Our local audi doesn't find

it surprising, but then he's known Ian for almost 8 years now.

The FM: We recently purchased new aids for Ian, Phonak aids in fact. And

yet they did not work with the Phonak FM system, even though Phonak insisted

that they were compatible. The final solution was to send the an aid and the FM

together to Phonak to trouble shoot. We'd bought the new aids a few months

apart so that we could get the maximum reimbursement by buying each aid it a

different " calendar year. " So while the FM was being " fixed " Ian worked with

one new aid and one old. I'm not sure if this will work for you since the aids

and FM are different brands, but I'd call Phonak and ask.

Also, since you are traveling to , ask them to recommend an educational

audiologist. Let them know what problems you're having -- including the FM,

and see if there is someone you can deal with to address this. They may have

someone local to them, or local to you. We've found that the big hospitals

and big schools have a network of people all over the place. Our school district

contracts with a local hospital's Communication Disorders center for the

care of Ian's FM. The audiologist there deals with FMs all the time, and she's

the one who threw up her hands and shipped it back to Phonak. Sometimes it's

the unit itself that is the problem.

As for dealing with your district, you need to get a good evaluation done by

people who know about deafness and those issues. It doesn't matter if they've

just met your son, they know about the kinds of things he may need and

they'll know how to evaluate those needs. Like I said, that's why we seek them

out. And don't be surprised at your local district not liking it, districts

don't like outside experts unless they're the ones that sought out the experts.

In order to get what your child needs from the district, you have to be

prepared and asking for what you want, for what Bobby needs. They obviously

haven't a clue what they should be providing or what a D/HOH child needs. So,

tell

them and then insist that they find a way to provide it or foot the bill for

tuition to the Deaf school. (Are you near the one in Hartford?)

Also, don't panic about missing the window on speech and comprehension.

Kid's brains are amazingly resilient things and he can still catch up and do

just

fine. What's done is done and now you move forward. You are having him wear

the aids, you're looking into AV ... you're moving forward with positive

steps. That's all good, so don't kick yourself for what you've not done. 20/20

hindsight is a very depressing perspective and I spent far too much time trying

to figure out how I missed thing or what I did to cause them. Mommy guilt:

unavoidable and very counter-productive.

We don't know when Ian's loss started and then we aided him as soon as we

knew. As far as we know, he was never given ototoxic drugs (surgery at 6 weeks

old). We don't really know the cause, even though he is diagnosed with a

specific syndrome (Goldenhar). The syndrome explains the presence of a loss, but

not the progressive nature of his. Ian's an interesting collection of little

issues -- and a really nice young man. (grin)

You've already gotten great advice about the books to pick up. And if you

don't want to buy them, call the library. Around here, if the books is available

in the county-system, they will transfer it over to our local library for us

to borrow. It's a great thing. Then if you like any of the books, you can

order them through the book stores. I have a tendency to highlight things and

dog-ear pages, so I have to restrain myself when I've borrowed books and use a

lot of post-it notes instead.

<<I spent countless hours answering the same questions over and over ...

it's felt pretty lonely lately.>>

Then you know that we don't mind a bit! (wink) And that loneliness part is a

big reason why this list started in the first place. Parents found each other

online and Kay started the Listen-Up site and this list serve. It is a link

for many of us in isolated situations. The funny part is I don't live in a

real rural area. We live close enough to NYC that I use to commute. Yet our son

is a one-of-a-kind in our school district. There are two other D/HOH kids we

know nearby and one is a kindergartner -- there aren't many like him around

here. Yet on this list is a group of people who " get it " and know what I

mean without long explanations. It's great!

And last but certainly not the least, the car accidents. It may feel like

you are jinxed, but it sounds to me like you have yourself a guardian angel. My

husband fell asleep at the wheel on I-84 two days before Christmas in rush

hour traffic ... the car was totaled, yet he climbed out the window and sat

down on the median waiting for the police. When I saw the car, I was stunned

that anyone had lived, let alone walked away. I refer to that as the best

Christmas present I ever received (and the best recommendation for owning a VW

Jetta). I still refer to it as that, even though we had to go car shopping over

Christmas vacation -- not a pleasant task. So while it feels like an

automotive curse, think instead about the fact that none of you was hurt and

you

could have been. That particular glass is definitely half-full from my

perspective.

Again, welcome to the list,

Jill

[Guest guest]

In a message dated 5/5/2006 10:47:45 P.M. Eastern Daylight Time,

chester2001@... writes:

To top that off, someone I spoke to from a deaf school took one look at

Bobby's audiogram and told me that he doesn't have a " unilateral loss " , like I

had been told, but that both his ears don't hear well and he would benefit from

a second hearing aid to amplify those sounds he can't hear. Why didn't

anyone suggest this 8 months ago? She also suggested AV therapy, and that he

needs catch up work to bring him up to speed. No one said any of this before.

When I brought this up to the person in charge of decisions about services

for special needs kids in our school district, she said that I should be

careful about taking recommendations from " strangers who don't know him " . But

I

said in response, that these people eat, sleep and breathe hearing impairment,

and if I can't trust them, who can I trust.

Exactly ... and that is why you'll find out that many of us here have taken

our kids to the local deaf school for evaluations. Sometimes " total strangers "

are the best people to help. I learned everything I know about hearing loss

and how to help my son from generous and wonderfully patient " total

strangers. " The local school had never had a D/HOH student who wasn't multiply

handicapped and lied regularly about what options could or should be available

for

our son. Strangers were far more helpful, and several of them are now

friends.

You have certainly been through the ringer and the good new is that you keep

finding your way though the mess to get better answers. Stubbornness can be

a good thing (grin) Congratulations, that's not an easy task and you should

take pride in it.

Welcome to the list. I am Jill, mom to a 15-year-old son, Ian, who has a

progressive bilateral loss, currently in the moderate range. Ian was not

diagnosed until he was 7 and his verbal and lip reading skills helped fool us

all.

He even lip read his way through his first booth tests with an absolutely

hideous audiologist.

When this all started for us, we had a misdiagnosis of a very mild hearing

loss from that bad audi. We are a hearing family who knew nothing about hearing

loss and so it was all new and I didn't even know what questions I should

ask. We stumbled the way you have, being lied to and misled by our school

district but eventually we found the right answers and solutions. Believe us

when

we tell you that you can also manage this! You've already started.

<<Her school staff obviously doesn't know what they are doing, because the

day before I took him to Yale to get him tested in a real soundproof room by

professionals, the speech teacher at his school had told me that he is not

the kind of kid who will need hearing aids because he " speaks too well " , and if

it's anything, " he probably has fluid in his ears " . >>

And now you know how much you CAN " T rely on her or the school's

professionals for any valuable input. I would simply dismiss her and not take

what she

has to say seriously. If you need a speech evaluation, get one from or

the deaf school near you. Your district will rely on her for " professional "

input, but I would seek out someone else so that you have a private eval to put

up against whatever she bring to the meetings.

We still have people who don't believe that Ian has a " serious " hearing loss

because he speaks so clearly. When we went to Montefiore last time, their

audiologist spoke with him a bit before doing the booth test and afterwards

commented in surprised tones about his verbal skills and clarity, complimenting

him. He does have really clear speech, but that doesn't negate his loss, it

just masks it. Ian's loss is post lingual and it's conductive so there isn't

the sound distortion that often comes with an SNL. Our local audi doesn't find

it surprising, but then he's known Ian for almost 8 years now.

The FM: We recently purchased new aids for Ian, Phonak aids in fact. And

yet they did not work with the Phonak FM system, even though Phonak insisted

that they were compatible. The final solution was to send the an aid and the FM

together to Phonak to trouble shoot. We'd bought the new aids a few months

apart so that we could get the maximum reimbursement by buying each aid it a

different " calendar year. " So while the FM was being " fixed " Ian worked with

one new aid and one old. I'm not sure if this will work for you since the aids

and FM are different brands, but I'd call Phonak and ask.

Also, since you are traveling to , ask them to recommend an educational

audiologist. Let them know what problems you're having -- including the FM,

and see if there is someone you can deal with to address this. They may have

someone local to them, or local to you. We've found that the big hospitals

and big schools have a network of people all over the place. Our school district

contracts with a local hospital's Communication Disorders center for the

care of Ian's FM. The audiologist there deals with FMs all the time, and she's

the one who threw up her hands and shipped it back to Phonak. Sometimes it's

the unit itself that is the problem.

As for dealing with your district, you need to get a good evaluation done by

people who know about deafness and those issues. It doesn't matter if they've

just met your son, they know about the kinds of things he may need and

they'll know how to evaluate those needs. Like I said, that's why we seek them

out. And don't be surprised at your local district not liking it, districts

don't like outside experts unless they're the ones that sought out the experts.

In order to get what your child needs from the district, you have to be

prepared and asking for what you want, for what Bobby needs. They obviously

haven't a clue what they should be providing or what a D/HOH child needs. So,

tell

them and then insist that they find a way to provide it or foot the bill for

tuition to the Deaf school. (Are you near the one in Hartford?)

Also, don't panic about missing the window on speech and comprehension.

Kid's brains are amazingly resilient things and he can still catch up and do

just

fine. What's done is done and now you move forward. You are having him wear

the aids, you're looking into AV ... you're moving forward with positive

steps. That's all good, so don't kick yourself for what you've not done. 20/20

hindsight is a very depressing perspective and I spent far too much time trying

to figure out how I missed thing or what I did to cause them. Mommy guilt:

unavoidable and very counter-productive.

We don't know when Ian's loss started and then we aided him as soon as we

knew. As far as we know, he was never given ototoxic drugs (surgery at 6 weeks

old). We don't really know the cause, even though he is diagnosed with a

specific syndrome (Goldenhar). The syndrome explains the presence of a loss, but

not the progressive nature of his. Ian's an interesting collection of little

issues -- and a really nice young man. (grin)

You've already gotten great advice about the books to pick up. And if you

don't want to buy them, call the library. Around here, if the books is available

in the county-system, they will transfer it over to our local library for us

to borrow. It's a great thing. Then if you like any of the books, you can

order them through the book stores. I have a tendency to highlight things and

dog-ear pages, so I have to restrain myself when I've borrowed books and use a

lot of post-it notes instead.

<<I spent countless hours answering the same questions over and over ...

it's felt pretty lonely lately.>>

Then you know that we don't mind a bit! (wink) And that loneliness part is a

big reason why this list started in the first place. Parents found each other

online and Kay started the Listen-Up site and this list serve. It is a link

for many of us in isolated situations. The funny part is I don't live in a

real rural area. We live close enough to NYC that I use to commute. Yet our son

is a one-of-a-kind in our school district. There are two other D/HOH kids we

know nearby and one is a kindergartner -- there aren't many like him around

here. Yet on this list is a group of people who " get it " and know what I

mean without long explanations. It's great!

And last but certainly not the least, the car accidents. It may feel like

you are jinxed, but it sounds to me like you have yourself a guardian angel. My

husband fell asleep at the wheel on I-84 two days before Christmas in rush

hour traffic ... the car was totaled, yet he climbed out the window and sat

down on the median waiting for the police. When I saw the car, I was stunned

that anyone had lived, let alone walked away. I refer to that as the best

Christmas present I ever received (and the best recommendation for owning a VW

Jetta). I still refer to it as that, even though we had to go car shopping over

Christmas vacation -- not a pleasant task. So while it feels like an

automotive curse, think instead about the fact that none of you was hurt and

you

could have been. That particular glass is definitely half-full from my

perspective.

Again, welcome to the list,

Jill

[Guest guest]

In a message dated 5/6/2006 10:11:16 A.M. Eastern Daylight Time,

JillcWood@... writes:

So while the FM was being " fixed " Ian worked with

one new aid and one old. I'm not sure if this will work for you since the

aids

and FM are different brands, but I'd call Phonak and ask.

If you do this through a local hospital, you should be able to get a loaner

aid while yours is off to be repaired.

[Guest guest]

Trish, actually the fact that he says " what " all the time is GOOD! It is

evidence that for some time he was able to hear a lot better than he can now.

So don't despair about being too late for his brain development, if " what "

comes out, there's good brain auditory and language centers going on! My

daughter, diagnosed at age 4 with mod-severe loss didn't say " what " because she

hadn't ever heard well enough. At the time of diagnosis she had a lot of verbal

language but it had gaping holes (everything in the higher frequencies) and very

poor vocabulary. She did AVT from 4 - 5 years old and is now a 14 year old cell

phone user and honor student. So you have a good foundation to build AVT on.

AVT is all about building the brain. Especially the auditory skills that undlie

good language and speech.

I can identify with Bobby being a child with CHD (congenital heart disease for

all you civilians)- but from the other side of the bed! I used to work at

Childrens Mem in Chicago (mid 80's) and took care of kids before and after open

heart. It doesn't get any more critical than a single ventricle. We didn't have

very much success with that but that was 20 years ago. I'm now in GA and work

in cardiac research, all adults though. One of the doctors I work with closely

sees the now grown-ups who were kids with CHD. It is really gratifying to see

these kids when they are all grown up! We do a lot of ASD and PFO closures on

adults. So that makes me feel closer to my pediatric nurse roots.

Jill is 2000% right about not listening to your school district. If for some

weird reason they did know squat about hearing loss and it's effects, they

would be like the ed. aud and just sit there silent during the IEP meeting. The

second audie we ever saw was the school audie. She was incredibly helpful and

got me hoooked up with AG Bell and Carol Flexer's books right away. She was a

" yankee " (like me) and was very outspoken, caring and funny. But at the IEP

meeting she was mute. She left the school system shortly after that. Not sure

it has anything to do with our problems (Due Process, OCR complaint, IEPs from

hell) but she now has a thriving practice with offices in two towns and we still

see her. But I digress. We went for an evaluation at the Atlanta Speech

School, which is a school like e, and it was the best thing we ever did.

(Our school system tried to get us to use the Atlanta Area School for the Deaf

because that wouldn't cost them anything, but they are an ASL school and they

said they didn't really have any expertise in verbal, HOH kids. That didn't

bother our district in the least) Ten years later, we still are using things we

learned during that eval! They were total strangers for about 1 minute! I

learned more in two days about the effects of Maggie's hearing loss and it

really got us pointed in the right direction. They pointed out the behaviors

that were hearing related and also emphasized her strengths. Had we listened to

the school system (who said she needed NOTHING) I shudder to think where Maggie

would be today. Probably the juvenile detention center!

You sure have had bad luck with driving lately! My middle child is our " wild "

child and she managed to flip and total her Jetta one week before she was

supposed to start college but was pretty ok - did have a fractured vertebrae so

not totally unscathed. But very much alive. But we were so glad we had gotten

her the Jetta knowing she was an accident looking for a place to happen! Our

older daughter had a diesel Rabbit in high school, we used to joke that it

wouldn't go fast enough to get in a wreck. Maggie gets her learners permit in

August. AARRGGHH.

But you have come to the right place. And you get to be a question asker for a

while. Glad we can be here for you and Bobby. in GA

[Guest guest]

Rhonda wrote " On the FM, have you contacted the company it is made by? If you

don't have an audiologist who knows how to set it up, that would be my first

call. They may even have someone they can send to you. "

Rhonda, You're not going to believe this one too. Dead end #6, I called

Phonak and somehow got to a tech who knew a lot about the FM and how to make it

work. She at least answered my initial question, which was how to turn the

stupid thing off, because it didn't work from the instructions in the book. She

said she couldn't talk to me directly, because I am not an audiologist. I told

her the audiologist had spent 2 hours on the phone with them, and still didn't

know how to program it. She said that the audiologist should really be involved

in this because " it would be a learning experience for both of us. " (!!!!!

SCREAMING AND PULLING MY HAIR OUT IN CLUMPS !!!!!!!) I am so done with my son

being someone's " learning experience " !!!!!!

Trish

[Guest guest]

Rhonda wrote " On the FM, have you contacted the company it is made by? If you

don't have an audiologist who knows how to set it up, that would be my first

call. They may even have someone they can send to you. "

Rhonda, You're not going to believe this one too. Dead end #6, I called

Phonak and somehow got to a tech who knew a lot about the FM and how to make it

work. She at least answered my initial question, which was how to turn the

stupid thing off, because it didn't work from the instructions in the book. She

said she couldn't talk to me directly, because I am not an audiologist. I told

her the audiologist had spent 2 hours on the phone with them, and still didn't

know how to program it. She said that the audiologist should really be involved

in this because " it would be a learning experience for both of us. " (!!!!!

SCREAMING AND PULLING MY HAIR OUT IN CLUMPS !!!!!!!) I am so done with my son

being someone's " learning experience " !!!!!!

Trish

[Guest guest]

>

> Cherly,

>

> If you are working with Karas at Yale, the ENT, you are in the

best of hands. That man is an absolute angel. Bobby had his tonsils

and adenoids out a few years ago, and he did the surgery. He is kind,

compassionate, easy to get a hold of, and he really cares. Had three

kids of his own I think. So since I don't think there is any other

ENT surgeon there, you can relax with because he's wonderful.

>

> Who are you seeing for an audiologist?

>

> Thanks for the wwelcome, Cheryl. I'm sure we'll have lots to talk

about on this list.

>

> Trish (PS, I'm an RN and I used to work at Norwalk Hospital. I

lived in Wilton.)

Hi, Trish, Yes it's Karas. I do like him, but I emailed him

once recently and he never responded. I'm also not thrilled with his

office staff. We were seeing a local Norwalk ENT, Dr. Weiss, if you

know him. He said that Clara should see a pedi ENT due to her other

issues (she had cranisynostosis and eye problems due to a rare

syndrome called Saethre-Chotzen). So I call to make an appointment

and find out he doesn't use our insurance. I try to find another pedi

ENT but the only on in CT is in Hartford. I'm sure there are many in

NYC but we decided since all her other specialists are at Yale that we

should go with Karas anyway. We do have out-of-network benefits so

after the deductible they should pay us something. So I call back and

practically have to beg them to make an appointment because of the

insurance situation. It seemed like they were afraid we wouldn't pay

them or something? They told me about 10 times that I was responsible

for the bills. And one they heard surgery was involved, they kept on

blabbing about how it's not just Dr. Karas who will charge but the

anesthesiologist and the hospital itself (they all take our insurance,

so I don't see why that is an issue, and if our insurance doesn't pay

the hospital, it's our problem, not Dr. Karas'). It was all very

annoying, like they were assuming we were deadbeats.

As for the audiologist, we were seeing the audiologist that works with

Dr. Weiss in Norwalk, Dawn (can't think of her last name right now).

But I was never impressed with her. We've also seen Shulman in

Fairfield, who seems more knowledgeable. We're going to see Leo

at Yale Medical Group June 1 to see how they are. We moved to

Connecticut from CA about 18 months ago and it's been frustrating that

we haven't been able to find an adiologist I'm happy with. We had a

great one in CA and I should send her a note because I did not

appreciate her enough when we had her. In general, I like the

specialists at Yale better than the ones we had in CA. But we just

haven't had luck with an audi for her. We needed to have her eyes and

her head worked on some more, she's had 3 surgeries at Yale in the 18

months we've lived here, but now I'm really working on the audi issues

because at this time I think it's her most pressing issue.

Our only experience with Norwalk hospital is the ER visit when Clara

fell and needed stitches in her chin. Fun, fun. I know that Norwalk

Hospital does have a speech/hearing center of some kind but do they do

a lot with children? I've also heard about someone in Greenwich which

I may check out as well. Wilton is very nice, we're renting a condo

in Norwalk and trying to figure out how we'll ever going to buy

anything around here (Hahaha)

I hope you will soon get the services your son needs. I don't

understand why everyone in the schools has to make this so difficult.

It's hard enough as it is. Clara's not in school yet, and I'm

already dreading the whole process, lol.

Take care, Cheryl

[Guest guest]

Kerry,

Just looking at all the great replys and wanted to say that the first tip off I

had that there was a lot more to this than slapping a hearing aid on Bobby's ear

and thinking that everything was now " Fixed " , was when we went to the first

workshop I went to and 'Carol Flexer was the speaker. Of course, I had no idea

who she was, but boy oh boy was it an eye opener. That was when I started going

to anything and anywhere I could find out more and it didn't take long before I

apparently know more than the school system.

Thanks for the recommendations on the books, I will call the library tomorrow

and get them. I have so much to learn! I am a member of AG Bell now, and I am

going to the Pittsburgh conference in June with my husband. I wish I could be

cloned, because there are so many sessions that overlap with other really great

ones. It will be the first time I leave Bobby overnight, so I'm a little

nervous, but we couldn't afford to take him and/or the other three.

Anyone else going? I'd love to meet some people.

Trish

RE: intro from Trish and Bobby...need help and friendship

Hi Trish-

Go and grab a copy of Sue Scwartz's " Choices in Deafness " . The last

edition is a few years old, but it does a great job summarizing the

communication methods out there for HOH kids and has student profiles

(and audiograms) of kids following each method. If you have a Borders

or & Noble nearby, you might want to call to see if they have it

in stock-- often they do. While you are at it, Carol Flexer, an

audiologist and certified auditory-verbal therapist in Ohio, has

published several books on the educational impact of hearing loss and

technology. It will bring you up to speed and help articulate what

might help Bobby in the classroom (I like " Facilitating Listening and

Hearing " and a book she co-authored with Lyn on, " Literacy

Learning for Kids who are Deaf and HOH " ).

Since you appear focused on Bobby's oral skills, I'd also recommend

joining AGBell (www.agbell.org). Parents can get a free 6-month

membership to check it out. They have their annual conference coming up

next month in Pittsburgh, plus a wealth of information on their site and

in their publications. The Connecticut chapter is pretty active:

http://agbellct.tripod.com/agbellct2000/index.html, although the site

references 2005 activities.

All of us have struggled to find the right support team for our kids,

and it seems like you are still trying to find the right audiologists

and ENTs to work with Bobby. Use the parent resources in CT AGBell to

get some referrals to good pediatric audiologists and ENTs. You can

also get a list of those professionals who specialize in young children

at www.asha.org (ASHA is their professional organization). We said

goodbye to several audiologists and ENTs before we found the ones we

love.

And, if you are seriously contemplating resources in Massachusetts, let

me know. We are on the South Shore, love the audiologists we use (at

Children's Hospital and a local office), adore the ENT practice, and

have just the greatest auditory-verbal therapists working with us.

There are quite a few of us on this board who are from around the state

and utilize different methods.

Kerry