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--

My son was diagnosed as severely apraxic (verbal apraxia) and we have

been assigned some true " duds " in the SLP department, believe me, I know that

is so frustrating . . . I will say though, that when we finally find an SLP

that was trained properly with apraxia, he blossomed. In fact, the child will

NOT SHUT UP.

Have you tried to find a PROMPT-trained therapist in your area? These are

therapists that are specially trained for apraxia treatment and use a

combination of oral motor exercises and facial touch prompts to elicit speech

from our kids. I think their website contains a database of certified SLP's .

.. .

Also, we began adding one capsule of ProEFA by Nordic Naturals per day

(lemon-flavored fish oil) and noticed an IMMEDIATE surge of language out of

my son.

Feel free to contact me offlist if you have any questions about Prompt or

ProEFA.

-BJ in polis, MD

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That is just AWESOME!!!!!!!

The only drawback to signing that I didn't even think of really as opposed

to PECS (Matt's teacher brought it up) was that if he's out and about, other

people may not know his signs. The PECS pictures are easy to understand.

But then again, he'd need to have the pictures with him, so I figure it's

pretty equal either way. I LOVE having Matt sign. It makes it SO much

easier when we're out. Sure, sometimes we have to ask a ton of questions to

get to what he wants, but it works. :-)

Congrats again!!!!

mARYELLEN

Signing

So we just checked out a Singing for nonverbal kids video and played

it last night for the twins as their night night video -

My son, whose apraxic, with a speech therapist who knows little to

nothing about apraxia (whole different subject and yes i'm searching

high and low for a qualified speech path who can see him - i've made

literally dozens of calls...no availability, not on our first steps

lists, etc.etc), sat there for the full half an hour laughing and

SIGNING BACK TO THE SCREEN (at least his appoximations).

I cried - we've been trying to teach him simple signs for a while,

but he hasn't been incredibly responsive to it. Watching him, being

able to talk back to the " learning tapes' for the first time, he was

sooo happy. HE WANTS TO TALK AND CAN'T! THIS (and everything else

about autism) SUCKS! Upside - maybe he can finally communicate with

us if we push the signs. Anybody good or bad experiences signing vs.

PECS? Our ABA consultant really thinks signs are a better way to go

(thats what's done in the school, its universal, etc. etc.)

He appoximated all 30 signs, I can't believe it. What a champ.

- , wondering what she's doing posting at 6:am?

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> ,

>

> What's the name of that video? I'd like to see if I could order it

at my

> library.

>

> Tuna :)

>

It's called " Talking Hands - A Sign Language Video for Children " put

out by Small Fry Productions. It covers 30 basic signs - kept both

of their interest the entire 45 minutes!

-

> ****

>

>

> _________________________________________________________________

> STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

> http://join.msn.com/?page=features/junkmail

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> The only drawback to signing that I didn't even think of really as opposed

> to PECS (Matt's teacher brought it up) was that if he's out and

> about, other

> people may not know his signs. The PECS pictures are easy to understand.

> But then again, he'd need to have the pictures with him, so I figure it's

> pretty equal either way.

Exactly what I was going to say. With you having twins I am sure you have

enough stuff to lug around with you all the time as it is, without adding a

PECS book. It IS important that you already know what the school uses.

is in a class with a girl who only uses ASL so the teacher knows it

fairly well. He will sign and won't use PECS, so that works out well for

us.

But the PECS really are more readily understood - there are not a lot of

people out there (in the general population) who sign. With the PECS cards

they can make themselves understood to anybody and that can be very

important if this is going to be a primary means of communication for a

significant period of time. PECS are easier for some kids because they are

more concrete, or because the child has poor fine motor control or low

muscle tone.

Personally I see advantages and disadvantages to each, and I think the

bottom line is - what works for you? Which is easier for your child?

Good luck! :) Keep asking questions.

-Sara.

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In a message dated 12/12/02 7:44:56 AM Eastern Standard Time,

grind911@... writes:

> - , wondering what she's doing posting at 6:am?

That's wonderful I am so happy for you. Which ones did you get? A friend of

mine is looking into this for her son. I was thinking of suggesting the baby

bumbelbee ones?

:)

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  • 3 years later...

How exciting that she is learning. It is amazing how fast babies learn. My

graddaughter could sign about 30 signs by one year old. She had a trach and

was just starting to wear hearing aids. We made sure that we signed

everything We also put signs on about everything in the house bed chair etc.

The

most amazing thing was that her younger sister learned to sign and. at about

ten months she could sign play eat milk cookie and lots of other signs.

The oldest sister learned to sign at about six and she was so proud to be able

to have a signing class last summer at the summer camp where she worked.

The kids loved learning sign. Keep up the good work. It is a long journey

but the rewards when you see your child thrive are beyond words. My

granddaughter is now 18 and her journey is still in progress. Good luck to you.

Would you believe that some parents never learned to commuicate with their

child.

Many deaf people say that their parents never learned sign and how lonely

it was when they came home from school and there was no one to talk to. It

breaks my heart. So everyone out there please learn to communicate with your

child.

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You'd be surprised at how much she understands - what a gift you are giving her

with the signing! It has helped Kennedy tremendously...

supermama95 wrote:

Eva is almost 9 months old and we have been working with a theropist

for her hearing and signing, well last week she started signing daddy.

I am so excited to see her doing something we are doing. We know she

has no clue yet as to what it means but she is learning!! I am so

excited!!

Crystal and Eva (8 month charger)

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or email

info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

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It is sad to hear parents dont want to learn how to sign and talk to

thier child. I am the only one right now learning because my husband

is at work when I am learning with the theropist, I also have a very

good friend who has a degree in signing so she will be teaching the

grandparents and stuff. I thinks its a great thing to learn!!

Crystal

>

> How exciting that she is learning. It is amazing how fast babies

learn. My

> graddaughter could sign about 30 signs by one year old. She had

a trach and

> was just starting to wear hearing aids. We made sure that we

signed

> everything We also put signs on about everything in the house bed

chair etc. The

> most amazing thing was that her younger sister learned to sign

and. at about

> ten months she could sign play eat milk cookie and lots of

other signs.

> The oldest sister learned to sign at about six and she was so

proud to be able

> to have a signing class last summer at the summer camp where she

worked.

> The kids loved learning sign. Keep up the good work. It is a

long journey

> but the rewards when you see your child thrive are beyond

words. My

> granddaughter is now 18 and her journey is still in progress.

Good luck to you.

> Would you believe that some parents never learned to commuicate

with their child.

> Many deaf people say that their parents never learned sign and

how lonely

> it was when they came home from school and there was no one to

talk to. It

> breaks my heart. So everyone out there please learn to

communicate with your

> child.

>

>

>

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I agree with Chantelle. My son started signing around 8 months (I started

literally when he was born - I use to stand over him and sign and show him

everything) and his first sign was " bath " . He loved his bath! By 12 months

he was signing in 2 word phrases -- very meaningful and would attempt a

sound with it. Not only did he accomplish speech with signing, he is now a

phenomenal reader and speller because he uses sign! He is 8. Whatever you

do, keep signing and don't stop!!!!!

Debbie Matasker

Re: Signing

Way to go Eva! :) I think she knows exactly what she is signing.

Chantelle

>

> Eva is almost 9 months old and we have been working with a theropist

> for her hearing and signing, well last week she started signing

daddy.

> I am so excited to see her doing something we are doing. We know she

> has no clue yet as to what it means but she is learning!! I am so

> excited!!

>

> Crystal and Eva (8 month charger)

>

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

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cool what a cutie hmmmmmmmm i allways want to eat her up LOL

>

> Crystal-

> Cool!!! If you liken it to babbling " dada " -- with little understanding

> of

> the meaning -- we ooh and aah and rejoice. So we shall rejoice in Eva's

> signing of it as well! And soon she'll figure out that it means that

> special guy and she'll do it more often and with intention!

>

> Michele W

> Aubrie's mom

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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the number of people who dotn sign and shouldnt its realy good sometimes

ithink is hojuld know it just n case even though i can talk if i met up with

soem of you id need it wouldnt there and ive discovereed soemone at work

signs LOL heres me knwoing little signs trying to talk to this person say

hey and then soemone says oh she signs im like well i sued to to LOL oh well

i supose i will learn now ellen

>

> It is sad to hear parents dont want to learn how to sign and talk to

> thier child. I am the only one right now learning because my husband

> is at work when I am learning with the theropist, I also have a very

> good friend who has a degree in signing so she will be teaching the

> grandparents and stuff. I thinks its a great thing to learn!!

>

> Crystal

>

>

> >

> > How exciting that she is learning. It is amazing how fast babies

> learn. My

> > graddaughter could sign about 30 signs by one year old. She had

> a trach and

> > was just starting to wear hearing aids. We made sure that we

> signed

> > everything We also put signs on about everything in the house bed

> chair etc. The

> > most amazing thing was that her younger sister learned to sign

> and. at about

> > ten months she could sign play eat milk cookie and lots of

> other signs.

> > The oldest sister learned to sign at about six and she was so

> proud to be able

> > to have a signing class last summer at the summer camp where she

> worked.

> > The kids loved learning sign. Keep up the good work. It is a

> long journey

> > but the rewards when you see your child thrive are beyond

> words. My

> > granddaughter is now 18 and her journey is still in progress.

> Good luck to you.

> > Would you believe that some parents never learned to commuicate

> with their child.

> > Many deaf people say that their parents never learned sign and

> how lonely

> > it was when they came home from school and there was no one to

> talk to. It

> > breaks my heart. So everyone out there please learn to

> communicate with your

> > child.

> >

> >

> >

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I was a proficiant signer way before i talked and i was an early

reader too. I loved to sign. I still do though ive forgoten a lot. Get

me with a signer and ive remembered a lot.

Chantelle

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Just have to chime in on the signing threads. We actually just moved

to another town (16 miles north) so Cameron would have a better

ASL-based education. His hearing loss is conductive so he is extremely

verbal, but we want him to have a billingual education. Hearing aids

break, reading lips is hard and knowing ASL never kept a kid from

learning to speak. :>)

I remember when we first found out he was deaf (about 9 months old) -

and before we knew it was conductive or how well he would use the

hearing he did have.

I remember crying thinking that he'd never hear me say the words, " I

love you. " Well, he can hear it, but before he had really gotten the

hang of hearing he used a lot more sign and the sign that would melt

my heart was his " I love you. "

His hearing has been a topic of discussion at our house because lately

he's been asking to have his hearing aids off frequently. Today at

Mcs he asked me to take them out because it was " too loud " .

We're not sure what's going on - if his hearing has improved or his

hearing discernment is changing? We're seeing the audiologist next

week for his annual hearing test. We can activate the volume control

on his aids so perhaps that would resolve his issue.

Does anyone on this list have a child with a conductive loss

(Cameron's is severe/profound) who might shed some light on this? And

could his bone structure be improving or would that be a true miracle?

Although I don't post much on this list, I do appreciate being part of

it. And for those with medically fragile CHARGERs you are in my prayers.

Formerly of Seattle, WA now 16 miles north in Edmonds.

Wife to Linden and Mom to Cameron 3 1/2 (CHARGE) and 5 1/2 -

who would rather talk loud than sign to his brother, but signs to new

kids he meets because he thinks ASL is great - go figure! :>)

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Chantelle, that was a great job of explaining the hearing difficulties with

aides in place. 's experience was the same. Another problem was that

she was wearing one on the right side only, as she has no hearing on the left,

so throw in problems localizing sound..

And if there is fluid build-up, as was 's case, that also garbles and

muffles the sounds U hear. She is able to hear sufficiently well with

myrongotomy tubes in place that we decided not to use hearing aides. That was

her

choice as well as ours, However, we have still had to use FM transmitters in

classroom sometimes in the winters-if she has a cold, or extra congestion.

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Patty has both conductive and sensory neural losses. She stopped sign at age

two and only used oral communication.

Now we know that was plain wrong. At the end of her school career she

learned sign and we saw how dramatically it improved her life. And she learned

it

so quickly.

Last night we went to a restaurant and she was able to be totally involved as

she could hear and/or see the total conversation. She didn't have to be

frustrated or fill in the blanks mentally. She had a great intellectual time

and

so did we.

If I had it to do all over again I would make sure she had both forms of

communication.

In taking the aids out she used to do that when an infection would be

starting, when it was too loud, if her tinnitus was bad like Chantelle wrote or

when

she was mad. If she didn't want to hear what we were telling her to do out

they would come and she'd close her eyes so she couldn't lip-read. What a

bugger. Love that girl.

Bonnie, mom to a 23, Patty CHARGE 21, and wife to

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,

I don't have any answers about why the aides are bothering him. I cannot

imagine the bones healing, but I can imagine his nervous system being

stronger and more organized so that he is more able to process incoming

information.

I also wonder if there are other reasons, such as ear infections or always

having fluid in the ear and now that is resolved, so the conductive loss has

improved in that regard.

Just ideas. Let us know what his hearing test shows.

Kim

> Just have to chime in on the signing threads. We actually just moved

> to another town (16 miles north) so Cameron would have a better

> ASL-based education. His hearing loss is conductive so he is extremely

> verbal, but we want him to have a billingual education. Hearing aids

> break, reading lips is hard and knowing ASL never kept a kid from

> learning to speak. :>)

>

> I remember when we first found out he was deaf (about 9 months old) -

> and before we knew it was conductive or how well he would use the

> hearing he did have.

>

> I remember crying thinking that he'd never hear me say the words, " I

> love you. " Well, he can hear it, but before he had really gotten the

> hang of hearing he used a lot more sign and the sign that would melt

> my heart was his " I love you. "

>

> His hearing has been a topic of discussion at our house because lately

> he's been asking to have his hearing aids off frequently. Today at

> Mcs he asked me to take them out because it was " too loud " .

> We're not sure what's going on - if his hearing has improved or his

> hearing discernment is changing? We're seeing the audiologist next

> week for his annual hearing test. We can activate the volume control

> on his aids so perhaps that would resolve his issue.

>

> Does anyone on this list have a child with a conductive loss

> (Cameron's is severe/profound) who might shed some light on this? And

> could his bone structure be improving or would that be a true miracle?

>

> Although I don't post much on this list, I do appreciate being part of

> it. And for those with medically fragile CHARGERs you are in my prayers.

>

>

> Formerly of Seattle, WA now 16 miles north in Edmonds.

> Wife to Linden and Mom to Cameron 3 1/2 (CHARGE) and 5 1/2 -

> who would rather talk loud than sign to his brother, but signs to new

> kids he meets because he thinks ASL is great - go figure! :>)

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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,

Hi, im not sure if ive spoken to you before but I think i can

explain what your son is going through with his hearing aids.

He may be too young to explain this but he might have tintinitus

(ringing in his ears) and the sounds of garbled talking wich is what

i experience in busy places makes it really hard to follow

conversations. Hearing aides are yet to be perfect. They amplify ALL

sound. Including bacground " garbage noise " . The hearing aid cant

tell wich noise its supposed to be listeing to. Sometimes the

hearing aids filter out stuff we are supposed to hear so we miss

important information.

I am glad he does know sign. I would strongly encourage the use of

sign. As for hearing aids, next time he is eligable for new aids,

look into different brands. Also test the difference between analog

and digital. I would strongly recoment testing them first and see if

you could " borrow " them for a couple days. Its one thing to try them

on in a quiet doctor's office and try them in a real life situation.

Hearing aids are expencive. What the doctor suggests might be good

and what your son feels are good, can be very different. Thats the

case with my doc and my new hearing aids. I tested a couple and

actualy my hearing aids that im fairly happy with were not my doc's

first choice but its the one that I was the most happy with. My doc

is really great that way. :)

I hope this is somewhat helpful.

Chantelle (CHARGE)

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oh , i just read your son is 3. he may be too young to tell

wich hearing aid is better. What you may want to do is as you

mentioned, activate the volume control. Maby even in restarants and

really loud places alow him to take his hearing aids off (as long as

he gives them to you or your husband, lol!) Since you guys are

definatly using asl, its not going to impede any development.

Perhaps having the quieter environment he will be able to learn to

focus better on conversations. Maby thats why he wants the hearing

aids off. He probably relizes (in a basic way) that its too hard to

concentrate on what you guys are saying and all the noise is

distracting.

I would try the volume lowering if you can. I had digitals with no

volume controle for a long time so i forget to turn the volume down

and I will just opt to turn them off. lol! I have to say ive done

many errands and spents days (when im not working) with my hearing

aids off.

Hopefully when Camron is older he will be able to explain better why

he dosnt like to wear his hearing aids.

Chantelle (CHARGE)

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,

What kind of hearing aid does he have? With Evas they programed it

to her hearing level that was showen on her hearing test. Maybe they

should retest him and reset his hearing aid. I would talk to his

audiologist about it.

Crystal and Eva (8 month charger)

>

> > Just have to chime in on the signing threads. We actually just

moved

> > to another town (16 miles north) so Cameron would have a better

> > ASL-based education. His hearing loss is conductive so he is

extremely

> > verbal, but we want him to have a billingual education. Hearing

aids

> > break, reading lips is hard and knowing ASL never kept a kid from

> > learning to speak. :>)

> >

> > I remember when we first found out he was deaf (about 9 months

old) -

> > and before we knew it was conductive or how well he would use the

> > hearing he did have.

> >

> > I remember crying thinking that he'd never hear me say the

words, " I

> > love you. " Well, he can hear it, but before he had really gotten

the

> > hang of hearing he used a lot more sign and the sign that would

melt

> > my heart was his " I love you. "

> >

> > His hearing has been a topic of discussion at our house because

lately

> > he's been asking to have his hearing aids off frequently. Today

at

> > Mcs he asked me to take them out because it was " too loud " .

> > We're not sure what's going on - if his hearing has improved or

his

> > hearing discernment is changing? We're seeing the audiologist

next

> > week for his annual hearing test. We can activate the volume

control

> > on his aids so perhaps that would resolve his issue.

> >

> > Does anyone on this list have a child with a conductive loss

> > (Cameron's is severe/profound) who might shed some light on

this? And

> > could his bone structure be improving or would that be a true

miracle?

> >

> > Although I don't post much on this list, I do appreciate being

part of

> > it. And for those with medically fragile CHARGERs you are in my

prayers.

> >

> >

> > Formerly of Seattle, WA now 16 miles north in Edmonds.

> > Wife to Linden and Mom to Cameron 3 1/2 (CHARGE) and 5

1/2 -

> > who would rather talk loud than sign to his brother, but signs

to new

> > kids he meets because he thinks ASL is great - go figure! :>)

> >

> >

> >

> >

> >

> >

> > Membership of this email support groups does not constitute

membership in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@c... or visit

> > the web site at http://www.chargesyndrome.org - for CHARGE

Syndrome Canada

> > information and membership, please visit

http://www.chargesyndrome.ca or email

> > info@c... .

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be

available at

> > www.chargesyndrome.org or by calling 1-.

> >

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,

It is wonderful to read that Cameron seems to be doing so well with his

communication both signing and verbally!

Our son is almost 2 years old and like Cameron, has " severe to

profound " conductive hearing loss. (One ear is worse than the other.) He has

a BAHA softband. Which we have difficulty keeping on him.

Even on the lower settings he at times seems bothered by it. Our therapists

that work with him feel he hears them without the BAHA (because he will

respond and follow specific verbal instructions even if he does not have it

on.) We are not sure what to think. We too are wondering if his hearing has

improved (which would be great) and or is just minimally effected by

flucuations of fluid level etc, or better after he is on antibiotic etc. We

see audiology again next Friday and it will be on our list of inquiry. I

know you said Cameron also will see

his audiologists next week. I would be very interested to see what the

audiologists feel might be causing Cameron's possible improvement.

I know you mentioned specifically Cameron had asked you to turn down the

aide when he was at Mcs. That it was " too loud " (Beyond the chance

that he might be hearing more clearly, which would be so wonderful!!!) in

addition, he might find the backround noise distracting and too loud. I

have a partial hearing loss in one ear myself and often find it difficult

and exhausting in busy or loud rooms. It just takes more energy and

concentration to pull the conversation apart form the backround noise. It

might be like sensory overload for our children....Just a thought.

I hope Cameron's yearly evaluation brings good news!

We will keep our fingers crossed!

(mom to 21months,

5 1/2, wife to Pat)

Re: Signing

> ,

>

> What kind of hearing aid does he have? With Evas they programed it

> to her hearing level that was showen on her hearing test. Maybe they

> should retest him and reset his hearing aid. I would talk to his

> audiologist about it.

>

> Crystal and Eva (8 month charger)

>

>

>>

>> > Just have to chime in on the signing threads. We actually just

> moved

>> > to another town (16 miles north) so Cameron would have a better

>> > ASL-based education. His hearing loss is conductive so he is

> extremely

>> > verbal, but we want him to have a billingual education. Hearing

> aids

>> > break, reading lips is hard and knowing ASL never kept a kid from

>> > learning to speak. :>)

>> >

>> > I remember when we first found out he was deaf (about 9 months

> old) -

>> > and before we knew it was conductive or how well he would use the

>> > hearing he did have.

>> >

>> > I remember crying thinking that he'd never hear me say the

> words, " I

>> > love you. " Well, he can hear it, but before he had really gotten

> the

>> > hang of hearing he used a lot more sign and the sign that would

> melt

>> > my heart was his " I love you. "

>> >

>> > His hearing has been a topic of discussion at our house because

> lately

>> > he's been asking to have his hearing aids off frequently. Today

> at

>> > Mcs he asked me to take them out because it was " too loud " .

>> > We're not sure what's going on - if his hearing has improved or

> his

>> > hearing discernment is changing? We're seeing the audiologist

> next

>> > week for his annual hearing test. We can activate the volume

> control

>> > on his aids so perhaps that would resolve his issue.

>> >

>> > Does anyone on this list have a child with a conductive loss

>> > (Cameron's is severe/profound) who might shed some light on

> this? And

>> > could his bone structure be improving or would that be a true

> miracle?

>> >

>> > Although I don't post much on this list, I do appreciate being

> part of

>> > it. And for those with medically fragile CHARGERs you are in my

> prayers.

>> >

>> >

>> > Formerly of Seattle, WA now 16 miles north in Edmonds.

>> > Wife to Linden and Mom to Cameron 3 1/2 (CHARGE) and 5

> 1/2 -

>> > who would rather talk loud than sign to his brother, but signs

> to new

>> > kids he meets because he thinks ASL is great - go figure! :>)

>> >

>> >

>> >

>> >

>> >

>> >

>> > Membership of this email support groups does not constitute

> membership in the

>> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>> > For information about the CHARGE Syndrome

>> > Foundation or to become a member (and get the newsletter),

>> > please contact marion@c... or visit

>> > the web site at http://www.chargesyndrome.org - for CHARGE

> Syndrome Canada

>> > information and membership, please visit

> http://www.chargesyndrome.ca or email

>> > info@c... .

>> > 8th International

>> > CHARGE Syndrome Conference, July, 2007. Information will be

> available at

>> > www.chargesyndrome.org or by calling 1-.

>> >

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My son used hearing aids when he was about 1-3 years. He was in an

infant toddler program in a deaf school. Later the school iniated a

functionally deaf program for my son and another child whose hearing loss did

not really qualifty them for the deaf school. My son used the trainers in the

classroom through late elementary age. He is 18 now and still has tubes in his

ears. (He is fluent in sign but has been in a local high school special program

for the past 2 1/2 years where sign is not used )Most of his loss has always

been conductive. So long as the fluid issue is maintained with tubes his

hearing loss is mild and he hasn't needed to use hearing aids.

Kathy, Mom to 20 and 18 (charger)

Kim Lauger wrote:

,

I don't have any answers about why the aides are bothering him. I cannot

imagine the bones healing, but I can imagine his nervous system being

stronger and more organized so that he is more able to process incoming

information.

I also wonder if there are other reasons, such as ear infections or always

having fluid in the ear and now that is resolved, so the conductive loss has

improved in that regard.

Just ideas. Let us know what his hearing test shows.

Kim

> Just have to chime in on the signing threads. We actually just moved

> to another town (16 miles north) so Cameron would have a better

> ASL-based education. His hearing loss is conductive so he is extremely

> verbal, but we want him to have a billingual education. Hearing aids

> break, reading lips is hard and knowing ASL never kept a kid from

> learning to speak. :>)

>

> I remember when we first found out he was deaf (about 9 months old) -

> and before we knew it was conductive or how well he would use the

> hearing he did have.

>

> I remember crying thinking that he'd never hear me say the words, " I

> love you. " Well, he can hear it, but before he had really gotten the

> hang of hearing he used a lot more sign and the sign that would melt

> my heart was his " I love you. "

>

> His hearing has been a topic of discussion at our house because lately

> he's been asking to have his hearing aids off frequently. Today at

> Mcs he asked me to take them out because it was " too loud " .

> We're not sure what's going on - if his hearing has improved or his

> hearing discernment is changing? We're seeing the audiologist next

> week for his annual hearing test. We can activate the volume control

> on his aids so perhaps that would resolve his issue.

>

> Does anyone on this list have a child with a conductive loss

> (Cameron's is severe/profound) who might shed some light on this? And

> could his bone structure be improving or would that be a true miracle?

>

> Although I don't post much on this list, I do appreciate being part of

> it. And for those with medically fragile CHARGERs you are in my prayers.

>

>

> Formerly of Seattle, WA now 16 miles north in Edmonds.

> Wife to Linden and Mom to Cameron 3 1/2 (CHARGE) and 5 1/2 -

> who would rather talk loud than sign to his brother, but signs to new

> kids he meets because he thinks ASL is great - go figure! :>)

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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