Re: Mild loss audio says not deaf?

October 21, 2004

In a message dated 10/21/2004 6:34:30 PM Eastern Daylight Time,

kdidactivity@... writes:

Then i stated well hoh or deaf? I know my child needs help? so i asked her

when does he get it ? now or later?and why? what is deaf how much does he have

to lose? she said we are mistaken he is not deaf!Now what do we do for our

son?

Jill?what is Ian's loss and how quickly did it progress?what is it called

and where is his loss?It sounds alot like my son.

Hi ,

It is not important what they call your son. What is important is that he

has needs and the school has to meet those needs. Most people thnk " deaf " means

that a person cannot ehar anything. That's wromg, but why bother arguing? The

words I use to describe my son are " Ian is going deaf " and then no one dares

to argue with me as to how to define his hearing loss. He's not deaf, he can

hear and he hears even better with his aides. But me may be " deaf " by the

time he is an adult. I don't bother to argue with people over the definition of

" deaf " because I don't see how it helpssettle anything. The simple fact is

that Ian is losing his hearing bit by bit as the years go by.

He has a degenerative loss and right now both ears are in the 50-55 db.range

and it is called a " bilateral moderate conductive hearing loss. " Forgive me

if I am defining things you already know. Blilateral means he has hearing

loss on both sides -- left and right. A conductive loss indicates that his

cochlea and auditory nerve are not damaged. The doctors also suspect that he

may

have the beginnings of otoschlerosis, but I am not sure about all the details

of that. Our doctors don't agree on that point, so I have not spent a lot of

time learning about it.

His hearing is tested every 6 months, but sometimes the audi feels he needs

to come back at 3 months. If there is fluid in his ears, or if Ian has one of

his sudden drops, we come back sooner.

When he was 7-8 his loss was 35 in his right and 15 in his left. As his

hearing on the right side dropped a few decibels at a time, so did his left. So

the right side stayed about 20 dbs worse than the right. Then suddenly he lost

almost 20 dbs in his left woith no warning. It just dropped. Now both ears

were about equal. His left ear is now just a touch lower than his right. It

has been 7 years since we found out about his loss and in that time he has lost

20 dbs in his right ear and about 40 in his left.

Ian has been diagnosed as having a syndrome called Goldenhar. That was not

diagnosed because of his hearing loss, but because of a whole combination of

little issues. I don't want anyone jumping to the conclusion that because their

child shares some of Ian's issues, that the child also has Goldenhar. Only

a geneticist can tell you that. The markers for Goldernhar can be very

different fomr kid to kid. If anyone wants to know more about Goldenhar, I'll

gladly

share, but I don't see the point in listing Ian's litany of issues or how

they relate to the syndrome.

His hearing loss is the most obvious thing. It is the one thing that the

school provides services for. Our TOD also addresses his memory issues and

helps

him find techniques to get information into long term memory. She also

taught him to keep himself organized so his processing speed issue is not as

much

of a problem. He uses an FM system in school. The little boots hook onto his

hearing aids so he can listen driectly to the teacher or the movie, or to

whoever is holding the microphone. It has been a great help to him!

I'm not sure how to help you. I am little confused. Does your son have aids?

If not, then he certainly does need them. 40 and 50 db losses are not minor

or borderline. Is the doctor saying he does not need aids and that an FM is

enough? That does not sound right to me.

What state are you in? Ther are people in this list from all over the

country so I'm sure we can find some local advocay group or agency for you to

call

for advice as it relates to your state law.

Our insurance does not cover aids at all. But we are lucky that both of us

work and we have family who can help when there is a need. There are

organizations who give grants or aids to kids who need help. I'll gladly help

you with

the paperwork for one of those if you need that.

Well ... my husband and son are now home and we're about to have a very late

dinner.

Best -- Jill

(By the way, my daughter's name is .)

October 21, 2004