Deb's Introduction

[Guest guest]

Hi Deb - welcome!

You should insist that your pediatrician give you a referral for a hearing check

for Luc, particularly since you have one child with hearing loss. That's

considered a risk factor - where we are, if one child in the family has hearing

loss, the other kids are also screened.

Re: Zack's speech therapy - yes, you should file a complaint. It's not your (or

Zack's) problem that they are doing screening and his therapy shouldn't be

compromised because of it.

Wow - sounds like you have your hands full!

I have two boys - Tom is 7-1/2 and Sam is 5-1/2 - both of whom have hearing

loss. Tom's is severe; Sam's is profound. They both are in mainstreamed

programs and doing quite well. I have to say that we are SO lucky to be where

we are (in Hanover NH). Tommy's special ed coordinator even came to his Tae

Kwan Do white belt ceremony - isn't that something?!

On to Monday!

Take care - let me know how your journeys go....

Barbara

[Guest guest]

Sorry for the late reply. It's been a crazy week! Anyway, I told my

pediatrician at Luc's 15 month check-up that I'm concerned about his lack of

progress with speech

and he said to wait until his 18 month check-up (which is in about 3 weeks).

Unless he all of a sudden starts talking before then, I plan to politely insist

on a

hearing eval. Luc has never had his hearing tested (they've just now started

doing it routinely here on newborns).

Zach's hearing impairment is primarily in the higher frequencies. So he has

always responded to sound, but has had (and continues to have) difficulty with

his speech.

Since he was a baby, I've always been somewhat concerned that his speech wasn't

progressing as quickly as my other children's did. But everyone (including my

pediatrician at the time) kept telling me not to worry about it and that he

would " be fine " . Ha!! I just wish I would have listened more to my gut

feelings than what

everyone was telling me. Although Luc has never had otitis, which is still hard

to believe, considering all of my other children had at least 3 sets of PE tubes

put in

each, his lack of speech development reminds me too much of what we've been

through with Zach.

I am also incredibly frustrated with Zach's speech therapy, which is being

provided through our school system. He's not in school yet (we tried

Kindergarten last fall

but it was a disaster - that's another story!). He is supposed to have ST twice

each week (according to his IEP), but he has missed 4 of the last 6 weeks

because his

SLP has been busy with preschool screening, etc. I am getting ready to file a

formal complaint. We live in rural Illinois in a small school district, and we

only have

1 SLP. Although he is a nice enough person and has been pleasant to work with,

I get the feeling that he is one of those people that does what he has to to get

by and

nothing more. I have asked on many occassions for homework or some guidance in

finding appropriate activities to help Zach at home, and the only responses I

get is to

read to him (which I already do) or " keep working with him on his sounds " . I am

an educated person, but I am not a SLP. I want to help Zach, but I need more

specific

directions than that!! This is also the same SLP who did preschool screening on

Zach (including a hearing and speech eval) 2 years in a row, and told me that he

did not

have any difficulties in either area!!! Argh!!!!! Sorry for the rambling, but

thanks for letting me vent. It's been a long week!

Deb, mom to Zach (5 with mild/moderate hearing impairment), (12), ph

(10), n (8), and Lucas (18 months).

[Guest guest]

Sorry for the late reply. It's been a crazy week! Anyway, I told my

pediatrician at Luc's 15 month check-up that I'm concerned about his lack of

progress with speech

and he said to wait until his 18 month check-up (which is in about 3 weeks).

Unless he all of a sudden starts talking before then, I plan to politely

insist on a

hearing eval. Luc has never had his hearing tested (they've just now

started doing it routinely here on newborns).

____________________________________________________________________________

___________

You probably heard from a lot of people by now in regards to the above. It

is inconceivable to me that the ped would not automatically test a child who

has a hearing impaired sibling, especially if the mother is concerned.

" Politely insist " ? You have a lot more patience than I would have.

Barb

[Guest guest]

Deb,

Lexi had chronic otitis as well and we thought that was the reason for

her hearing loss. Once we got her ears totally clear we found out her loss

was permanent and has been there since birth. Her loss is mild to moderate

but in the lower frequencies. Doctors seem to think she has some bones fused

together in her middle ear. My youngest child is 16 months old now and says

nothing. He screams a very high pitched squeal and points, babbles a little

bit but mostly makes grunting sounds. I keep thinking it's because he's our

3rd child but since we already have one child with a hearing loss, I'm

starting to wonder. His hearing will be tested June 9th unless I chicken out

and cancel the appointment. It's kind of strange that I'm afraid to know the

truth. I agree with all the other mothers who have two children with a

hearing impairment, it definately would be harder finding out about the 2nd

child.

In a message dated 4/22/00 2:26:01 AM Pacific Daylight Time,

Listen-Upegroups writes:

<< That's why I want his

hearing tested. In retrospect, I don't think our pediatrician was concerned

initially because we think Zach's hearing loss is from chronic otitis. On

the

other hand, he was never tested before all of the ear infections, so is it

possible this could be a congential defect? How is it going for you? Deb >>

[Guest guest]

I know one mother who found out her second child was found to have hearing

loss and she looked at it another way - that she was already prepared for

what she would need to do for this second child because she had paved the

way with the first. She had changed her perspective and it worked going

into it positively. By the way, when I had my second child tested - it was

my deaf child's teacher who suggested it - and I had no trouble getting in

with the district audiologist.

>From: StormyWen@...

>Reply-To: Listen-Upegroups

>To: Listen-Upegroups

>Subject: Re: Deb's Introduction

>Date: Mon, 24 Apr 2000 01:15:23 EDT

>

>Deb,

> Lexi had chronic otitis as well and we thought that was the reason for

>her hearing loss. Once we got her ears totally clear we found out her loss

>was permanent and has been there since birth. Her loss is mild to moderate

>but in the lower frequencies. Doctors seem to think she has some bones

>fused

>together in her middle ear. My youngest child is 16 months old now and

>says

>nothing. He screams a very high pitched squeal and points, babbles a

>little

>bit but mostly makes grunting sounds. I keep thinking it's because he's

>our

>3rd child but since we already have one child with a hearing loss, I'm

>starting to wonder. His hearing will be tested June 9th unless I chicken

>out

>and cancel the appointment. It's kind of strange that I'm afraid to know

>the

>truth. I agree with all the other mothers who have two children with a

>hearing impairment, it definately would be harder finding out about the 2nd

>child.

>

>

>In a message dated 4/22/00 2:26:01 AM Pacific Daylight Time,

>Listen-Upegroups writes:

>

><< That's why I want his

> hearing tested. In retrospect, I don't think our pediatrician was

>concerned

> initially because we think Zach's hearing loss is from chronic otitis.

>On

>the

> other hand, he was never tested before all of the ear infections, so is

>it

> possible this could be a congential defect? How is it going for you?

>Deb >>

>

>

>All messages posted to this list are private and confidential. Each post

>is the intellectual property of the author and therefore subject to

>copyright restrictions.

>

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[Guest guest]

To be honest with you when they tested my second daughter, I was hoping she

would not have a loss because I didn't know how the heck I was going to

afford two sets of hearing aids when I am too " rich " for the state to help

me (but they help the parents under the income cap whose kids lose or break

theirs; those kids get pair after pair).

When I learned Hayley was deaf, I was dealing with a sordid (Jerry Springer

like!) crisis at the same time. I wouldn't say that her diagnosis was a

godsend, but it sure made me wake up and smell the coffee. From that moment

on, I concentrated on her and not some stupid personal stuff that was simple

to deal with.

>

>Reply-To: Listen-Upegroups

>To: Listen-Upegroups

>Subject: Re: Re: Deb's Introduction

>Date: Mon, 24 Apr 2000 21:01:29 -0400

>

>At 06:35 AM 4/24/00 -0700, you wrote:

>

> >I know one mother who found out her second child was found to have

>hearing

> >loss and she looked at it another way - that she was already prepared for

> >what she would need to do for this second child because she had paved the

> >way with the first. She had changed her perspective and it worked going

> >into it positively.

>

>That's all true, but there is another side to it. That you know what has to

>be done and how hard it will be for both you and the child. It was much

>more difficult for me to deal with the second diagnosis than the first.

>FWIW, I'm a dad.

>

>Chris

>

>

><< Christofer deHahn......Director of Information Technology >>

><< Chiliad Publishing.............Amherst, Massachusetts, USA >>

>

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[Guest guest]

In a message dated 4/24/00 1:15:59 AM Eastern Daylight Time,

StormyWen@... writes:

<< His hearing will be tested June 9th unless I chicken out

and cancel the appointment. It's kind of strange that I'm afraid to know

the

truth. I agree with all the other mothers who have two children with a

hearing impairment, it definately would be harder finding out about the 2nd

child. >>

,

Please don't chicken out. If there is a loss at all, I'm sure you know that

the earlier it's diagnosed the better and the sooner you can get to work with

it.

Suzette

[Guest guest]

At 06:35 AM 4/24/00 -0700, you wrote:

>I know one mother who found out her second child was found to have hearing

>loss and she looked at it another way - that she was already prepared for

>what she would need to do for this second child because she had paved the

>way with the first. She had changed her perspective and it worked going

>into it positively.

That's all true, but there is another side to it. That you know what has to

be done and how hard it will be for both you and the child. It was much

more difficult for me to deal with the second diagnosis than the first.

FWIW, I'm a dad.

Chris

<< Christofer deHahn......Director of Information Technology >>

<< Chiliad Publishing.............Amherst, Massachusetts, USA >>