How do oral-only kids do it?

[Guest guest]

>

> > Some implant centers are not as aggressive as others.

>

> So true. Our very own Sherry Zee (great website for info

> about educational rights, you'll find a link to her site near

> the top of my page called " Your Rights " has been trying to

> get her son qualified for an implant, but they keep telling

> her to try new hearing aids, come back in so many months,

> etc. He has very little hearing left and those who have heard

> his speech before say his speech has deteriorated greatly.

> His audiogram and sound booth test scores are worse than

> JD's, but the 2 implant centers near her say that he has too

> much hearing to qualify.

It's me Sherry Zee. I'm so frustrated with the whole process that I

don't even know what to do anymore. has LVA,which causes extreme

fluctuations in his hearing from day to day. He requires so much gain,

that good fitting earmolds are getting to be an impossibility. He still

refuses to wear his right hearing aid, and I have been trying for the

past few weeks to get him to keep it in. The last time I was in they

did nothing but insult my intelligence and treat me as if I don't know

anything. 's earmold had started whistling a few days before we

went down, unknown to me, and he had turned his hearing aid down- " That's

why YOU think he can't hear as well. " I was so ticked off. I mentioned

his fluctuating hearing and how hard it is to monitor, and when I

finally get him in to be tested it has come back a bit. They look at me

and asked why does his hearing fluctuate, they couldn't understand that.

I wanted to only go in and ask the surgeon questions, but she got called

off to emergency surgery. So I get to pay for yet another audiogram,

and they are sticking to the old criteria of have no benefit from

hearing aids-not the real world situation that my son lives in. And

they haven't bothered to contact me to reschedule a visit to speak with

the surgeon.

Other than that, does have a difficult time when he encounters new

people, and when you are not looking directly at him. He functions well

in the mainstream, the teachers have been good so far. He uses an FM

system at school, and the teachers use head phone mic's whenever

possible. We work hard on his listening skills, but he does rely on

speech-reading and he does have a signer/tutor as we call her to help

him in class. While prefers not to sign himself, or to have an

interpreter, he does watch what his signer is saying and signing (she

uses Total Communication and SEE). He receives one-on-one assistance

from her, the teacher of the deaf, and the SPL. We have incorporated

into his IEP that he learn " coping " skills, i.e., asking for

clarification when he does not understand, or asking for something to be

repeated if he didn't hear it, things like that. This has helped

tremendously with the regular ed teachers. They then realize what it

is he is missing out on. I have asked them to have restate what

they have said in order for them to know he heard. If they ask, do you

understand, he will always nod his head yes, even when he didn't. I've

had him demonstrate this for them. They are always amazed when he will

finally look at me and tell me he didn't hear them, nor understand the

directions.

There are days when he is having a really hard time that he just shuts

down. And at the end of the school day he comes home very tired and

crabby. We are trying to come up with some ways to help with these

situations.

Keep working with everyone involved in your child's education. It can

work.

Sherry

[Guest guest]

>

>

> If Sherry really wants the implant, she should be more

> aggressive. If she's willing to travel, I am sure she could

> find a center that would be willing to implant her son. I

> was amazed how quickly my moved through the process

> (six months from first visit to surgery day). I was even

> able to get them to reduce the hearing aid trial time,

> because it was obvious she was getting very little from the

> HAs. Good luck to Sherry.

I would have to travel great distance and I have no money, and HMO that

would probably in no way even consider it. Then once I got home what

would I do. I certainly don't want to alienate the two centers here

anymore than I already have. It will work out at some point.

Sherry

[Guest guest]

Oh, I never said anything about it being easy. I am sure Sherry is an

excellent advocate for her child, I wasn't implying otherwise. The

insurance might pay all, some or none. You never know until you ask. I

had to take my daughter to South Carolina (we're from NY) to get lens

implants. She was born with cataracts, and the only doctor who would do

the surgery at six months old was in SC. So we went there. My insurance

paid 80%, and I am paying off the rest. Which isn't easy since I

haven't worked in a year and my husband got laid off in April. Thank God

he's working again. All I am saying is, if it is the right thing, and

what she wants, it is possible.

mom to , 2, N24C at 16 months

[Guest guest]

Sherry,

Please don't think I was implying that you are not doing all that you

possibly can and more. I didn't know the situation and was just offering

my opinion on the limited facts the original sender of the post gave.

Where are you located? Which centers are you dealing with? Sometimes

putting pressure on the hospital or the insurance company has worked

miracles. I know a woman on the CICircle, Angie King who specializes in

dealing with insurance companies who don't cover CIs. Maybe she could

help you.

I had to travel far on very limited resources to get my daughter an

operation for her eyes. My husband was able to get a special rate from

the airline for medical necessity. Please know I was only trying to

help. It sounds like your son would greatly benefit from this

technology. Good luck to you.

mom to , 2, N24C at 16 months

[Guest guest]

>

> Sherry,

> Please don't think I was implying that you are not doing all

> that you possibly can and more. I didn't know the situation

> and was just offering my opinion on the limited facts the

> original sender of the post gave.

> Where are you located? Which centers are you dealing with?

> Sometimes putting pressure on the hospital or the insurance

> company has worked miracles. I know a woman on the CICircle,

> Angie King who specializes in dealing with insurance

> companies who don't cover CIs. Maybe she could help you.

I'm not thinking that way. The funny part of this whole thing, My HMO

has approved the surgery 3 times!! We purchase our own private plan,

which now costs nearly as much as my mortgage payment. I work around 50

hours a week, I'm wore out, and too tired to think most days. I live in

Washington State. We have two centers in Seattle. That's 1 and 1/2

hours each way-with minimal traffic. The last time it took me 3 hours

to get home. I spent a whole winter driving back and forth sometimes as

much as three times a week-taking time off from work. My frustration

now is trying to get some kind of straight answer out of anyone. Seems

that health care is becoming too political and fund driven. I think

they like to suck as much money out of me and my HMO before deciding

anything. Since they can't make up their minds, and I don't feel like

dealing with any professionals anymore, I bought my husband a new truck

for Father's day. He had been driving a 1981 datsun with around 300,000

miles on it, rusting around him, because we wanted to make sure we could

pay for whatever needed. When I find the energy again I'll deal

with them. It's just too bad for , he would love to hear

better-he's trying to sing these days and wants an electric guitar-a

Stratocaster like Hendrix and Townshend.

Never worry about offending me in any way-I'm pretty easy going-except

with doctors, implant centers, audiologists, hearing aids, earmolds,

therapists, schools.....

>

> I had to travel far on very limited resources to get my

> daughter an operation for her eyes. My husband was able to

> get a special rate from the airline for medical necessity.

> Please know I was only trying to help. It sounds like your

> son would greatly benefit from this technology. Good luck to you.

My gut tells me he would benefit tremendously. But who am I?

Have a great day

Sherry

[Guest guest]

>

> I think your solution sounds easy but it really is not. (By

> the way, I had

> to chuckle when I read your response as I've known Sherry

> since 1996...I

> betcha she could give us all lessons in special ed advocacy,

> and being the

> mom of a deaf child).

Hard to believe it's been so long already. Boy, look at all the

changes we have gone through!

You know the biggest problem I have is that is now 10 years old.

He is amazing at speech-reading, he has done so many audiograms that he

has the timing down and puts his hand up, even when he didn't really

hear it. I am always telling them to be careful about that (they look

at me like I'm stupid again). I really think they feel I am seeking an

implant as a miracle cure " . Some way to relieve my guilt over

having a genetic syndrome-which they don't even understand. I did

travel to Washington, DC last summer, and the doctor there felt that if

were on the east coast he would have an implant sooner. He says

that the west is a bit behind, and that the centers in Seattle don't

have all that much experience in dealing with kids with LVA/Mondini's.

does very well with limited sound information to figure out what

people are saying. He's also quite good at manipulating conversations,

controlling situations, and guessing. I think that would benefit

from an implant. We have some frustrating times in the household, he's

very loud and that gets harder to deal with. He tells me I talk to

soft, and I don't. When his hearing is worse it's real fun around here.

I think these centers should have to live with him for a month, then

they can make a decision.

Okay, off again

Sherry

[Guest guest]

> Hi Sherry, someone early made reference to CHIPS. Are you

> anywhere near Texas

> Children's Hospital? That's where I'll be taking my daughter

> for all of her

> mapping services.

I'm way up by Canada. We don't qualify for CHIPS, and if we did, I

wouldn't use it here. The insurance company they contract with is the

pits. I prefer my Group Health Co-op. They have issues too, but

actually cost less than the others, and they have approved the implant

previously. Kay and are after me constantly to move to San

, I would love it, but my husband wouldn't.

Thanks

Sherry

[Guest guest]

Sherry, Your son sounds like mine. He has just turned three, has

Mondini Dysplasia and EVA. His Oticon Digifocus II HAs benefitted him

from Jan (when we received them, analog before that, were okay) to

March when he started having vertigo spells, we think tinnitus from

his descriptions. Anyway, how he seems similar is that his hearing

fluctuated so wildly. We are moving along with the CI screening, and

it seems to be going smoothly. Now the HAs barely benefit him. Some

days better than others. We have also had nothing but problems

getting the molds to fit just right. He is amplified quite a bit, so

I can hear the squeal from a distance if the molds aren't in

correctly. And he recently had a big growth spurt, so I finally

brought him in for new molds. We are waiting for them. The audie who

made them did an excellent job, and redid one because the foam stuff

didn't go quite far enough. Nobody checked that before. He is

complaining about his left ear all the time, I can't get the ear mold

in without squealing now, so he turns it off all the time. He loves

his aids, or I should say lovED them, now he gets frustrated all the

time when he can't hear the radio when he turns it up (all the way,

I'm talking LOUD), or maybe it's just noise to him now, or he can't

hear a toy he could hear before. He gets very excited when he CAN

hear something, like the fire alarm today (I was browning some

chicken...long story). He just turned three, could talk very okay

with HAs, but has lost the ability quickly. I hate to watch that go

away, too. We are doing some in-home things now, I'm learning all I

can about AVT, he lip reads way better than we thought, too. When he

was at the hospital for screening, he got 100% correct when they were

having him pick out pictures, etc. Then they screened their mouths

and he got zilch, nada, zero. We knew he could read lips, but didn't

know how well. I've been capitalizing on that at home. He's using his

voice more now, too. Especially since I've read him " gets a CI "

book. He told me the doctor was going to fix his ears. I told him

that no, he would not fix your ears, he will help you to hear better.

Like my glasses help me to see. I think he gets it. We've relied on

sign language, but the transition to oral was quick when the HAs

benefitted him. Now I'm learning more. We'll see!

--Karin, Mom to 3, described above, 7.5 months, hearing

and his noisy brother wakes him up all the time!

[Guest guest]

>>> ... I'm wore out, and too tired to think most days. I live in

Washington State. We have two centers in Seattle. That's 1 and 1/2

hours each way-with minimal traffic. The last time it took me 3 hours

to get home. I spent a whole winter driving back and forth sometimes as

much as three times a week-taking time off from work. My frustration

now is trying to get some kind of straight answer out of anyone <<

Hi Sherry,

Boy, have I been there!!! I had an audiologist for my infant son that

would test a few frequencies and then tell me to come back so that she could

do the rest. As if it is easy to schedule appointments. I'm copying a

little bit of what I sent to Todd Houston when he asked for feedback on our

experiences with our team of professionals. I wonder if he is sorry he

asked? I'm sure it will sound very familiar to most people!

, mom to (9,HAs), (7,no loss), (3, Clarion

CI 7/99)

" Your audiologists need to know why parents come into their office

looking frazzled and angry. Here is what I typically went through to show

up at the audiologist's office for a 20-minute visit to make an ear mold

impression. I had 3 young kids at the time; the oldest was just starting ?

day kindergarten.

Try to schedule an appointment. Forget about getting a time convenient

for me; just grab whatever they can squeeze in because the squealing ear

molds will send me over the edge if I have to listen to them for one more

hour. Try to remember to call in the referrals. One can be sent

electronically down to the hospital, but one is not allowed to be faxed, so

I have to make an extra trip to the pediatrician's office to pick it up.

Can I make it up and back to the audiologist before the oldest gets off the

school bus at noon? Can I impose upon my neighbors one more time to get her

off the bus for me? What about my mother or my aunt? I decide to bring all

three kids. Try to remember to bring everything I'll need (drinks, bottles,

food, toys, diapers, etc) since we will probably have to wait 30-45 minutes

in the waiting room before they see us. Load all three kids in car; hope

middle child does not get carsick this time. Hope to make the 1-hour trip

into a not very good section of the city without getting stuck in a traffic

jam on the expressway. Get to hospital, wait in line to register, wait in

waiting room 30 minutes. All 3 kids are crying about something. I can't

blame them because I want to cry myself! Get into office, she takes

impressions and says she will call me when they come in. Then I get to

repeat the whole experience again in 10-14 days if I'm lucky so that she can

cut some ear mold tubes, shove them on the hearing aids and stick them in

the child's ear to see if they fit. I ask if the molds can be sent to my

house so that I can attach them. I can tell if they fit or not by this

point. If they don't fit, I'll bring them and the child back in. She says

no. I leave and make the 1-hour trip back home. Door to door time was

almost 3 hours, plus 30 minutes of cleaning up the car because the middle

child did get carsick and missed the bag!

This account does not even go into the way I had to keep track of how long

it was taking to get the ear molds (or other equipment). Sometimes the

insurance company would hold up approval of the claim and no one noticed

that it was taking too long to get the ear molds. So I would sometimes call

the insurance company directly to make sure that things were moving along in

a timely fashion. Sometimes the ear molds would get lost somewhere between

the ear mold manufacturer and the hospital's mailroom. Then we would have

to get another impression made and repeat the whole process. "

[Guest guest]

If it is acknowledged that he needs help then they have to provide it, not " try

to see if " they can get someone to help him. It may have to be an adult who is

paid to do this.

The school district wrote in my daughter's IEP that a student buddy would be

assigned to notice when a reading breakdown occurred and to get her back on

track. This was not acceptable to me. How would a fourth grader know when a

" breakdown " occurred? What caused the breakdown, how to fix it, how to get her

back on track? I asked for a classroom aide to be assigned to these things and

got it written into the IEP.

The teachers should know if the FM is working or not. It is federal law that

the amplification equipment, hearing aids, fm system, be monitored every day.

Barb

Re: How do oral-only kids do it?

Well, in elementary school is when he had the buddy. The buddy was usually a

straight A student; very organized. Mark would be intimidated I think to ask

questions even of the buddy. It worked for awhile but kind of went on the

wayside.

The FMs have been very good. He had some trouble I think the year before

last; he told all the teachers the last month of school that it was broken;

it was not and I never found out about it until AFTER school was out in his

IEP. Therefore, the following year I made sure I was to be contacted if he

was not using the FM system and I had it put in his IEP.

No, the buddy did not get paid or anything. That is why they told me they

could not force it upon any one kid, they (the school) would " try " to see if

they could get someone to help him. He doesn't have anyone lined up for this

year, but I am having him mainstreamed in 2 classes this year as a trial, so

we will see.

[Guest guest]

Sherry,

I hear you. Sometimes I get so tired of all of the BS I go through with

doctors, therapists, school, audiologists, etc. I need to take a break.

Afterward I often feel guilty for not doing anything for months but realize that

if I don't rest for a while I will burn out and be absolutely useless to my

child. I'm a single mom and pretty single-minded about what my child needs but

sometimes I just have to be less intense.

Barb

I'm not thinking that way. The funny part of this whole thing, My HMO

has approved the surgery 3 times!! We purchase our own private plan,

which now costs nearly as much as my mortgage payment. I work around 50

hours a week, I'm wore out, and too tired to think most days. I live in

Washington State