Re: advice -- this is long...

[Guest guest]

Michele,

I can't be of much help because we haven't gotten to this stage, but I'll be anxiously watching the answers to this one because it sounds like Aubrie communicates much in the same way Kennedy does ( a mish mash of sign & speech combined).

I wouldn't give in if you think she needs it though.

Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

advice -- this is long...

I need some help here if anyone's has had a similar experience. We just had Aubrie's case study eval for her transition from 0-3 to preschool. Things were going fine until the speech person gave her oral summary and said that Aubrie's primary language was spoken english with sign as an augmentative tool and that she needed an oral preschool environment and "some sign support would be nice". I have a much stronger feeling about the importance of Aubrie's signing. Let me tell you about Aubrie's communication development to see if any of your children are/have been similar. Aubrie's first word was spoken "mama". She never said much else so we began signing. She picked up sign long before speaking. At the beginning of the summer, she was putting together 2-3 signs in a sentence but only uttering one word vocalizations. Some of her spoken words are very clear but most are really vocalizations that may or may not approximate the actual word. She even has some "words" that use non-english sounds. For example, "kitty" is a weird sound from her throat. There are many speech sounds that she cannot make yet, like "p" and "b". As the summer progressed, she added new spoken words and new signs pretty much simultaneously. She is talking a lot more now than just a few months ago, but, as I said, her "words" are not usually very clear at all. Many are just the vowel sound of the word. Combined with the sign and in context, I can usually understand her. Her signs are also not very perfect because of her poor fine motor skills. So sometimes you need the vocalization to help interpret the sign. This morning, she signed a 4-word sentence to me on two different occasions about 2 different topics. She does not make that complex spoken sentences. My feeling is that signing is critical for her expressive communication at this time. BTW, she may or may not have a mild-moderate loss in one ear, but she scores very high on receptive spoken language. She doesn't need sign receptively, altho sometimes it does seem to help her understand things, but she needs it expressively. Even tho she doesn't require someone to sign to her for her to learn and follow instructions, she does need them to so that she can talk back about a new concept. She doesn't fit perfectly into a deaf school where there is total communication because her peers won't understand her unique combination of sign and speech and the only one modeling speech will be the teacher. But she doesn't fit into a regular hearing classroom either because those peers also won't understand her and she won't get the sign input for her to give back expressively. Right now, we think there are 2 possible options: 1) dual placement in the deaf preschool using total communication and a regular ed preschool on the premises that has some signing adults, and 2) any other good setting or still that dual placement with a communication facilitator (not really just an interpreter and not really just an aide, but someone trained in asl and child dev who can intervene when appropriate to help her communicate with peers, whether they are signing or speaking, and to give her sign and speech assistance as needed when she's trying to express something new). Has anyone had a kid in this situation? We aren't sure why Aubrie is having difficulty speaking. If it's a problem that can't be remedied well, then she may never speak clearly enough to communicate effectively. Some of the specialists who saw her briefly at the eval are wondering if she just needs more oral motor therapy. I don't know how effective our therapy has been up to now because I don't know enough about it. I'm not sure if she is capable of good speech or if she will need sign as a back-up for the long term. I'm not ready to take the option of sign away from her. She's been in a totally oral household and an oral community all her life and still has chosen to sign. I am not a fluent signer, I'm her only sign teacher, and still her sign vocabulary far exceeds her spoken one. I'm going to have to go in to the IEP meeting ready to argue the importance of sign. Any advice or comments out there?? Thanks in advance!Michele W mom to Aubrie (2.5 years) CHaRgE and (8 yrs), wife to DJ, in IL west@... "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Hello ,

had similar experiences, because of his trach, justin's speech was very

difficult to understand. Even after they removed his trach, he continued to

have trouble pronouncing certain sounds and a lot of people still do not

understand him. (He has to say things three to four times)

I have always fought for speech. The therapists have always used a combination

of signing and speech. picked up on signing so easily. I was ignorant

at the time and felt has only mild hearing loss in one ear and wasn't

going to have the trach for long, so why shouldn't we work on his speech and

have him as normal as possible. ( I always felt everyone was out to make

EVEN MORE different than he already was) What a fool I was.

has always been in an educational setting where they speak and sign.

is in a regular first grade class but I noticed his teacher does both

sign and speak directions, although no one is deaf. I look back at his earlier

years and feel I may be having some behavior problems out of now because

it is sooo frustrating for him to communicate and not get the response simply

because people do not understand what he is saying. Maybe if I would have

pushed harder for the signing also, would be more relaxed and be able to

get his feelings, wants, and needs out better.

A combination of both signing and speaking is best I feel. Good luck and let us

know where Aubrie gets placed.

Nicol

On Fri, 01 Sep 2000 10:38:21

Michele Westmaas wrote:

>I need some help here if anyone's has had a similar experience. We just

>had Aubrie's case study eval for her transition from 0-3 to preschool.

>Things were going fine until the speech person gave her oral summary and

>said that Aubrie's primary language was spoken english with sign as an

>augmentative tool and that she needed an oral preschool environment and

> " some sign support would be nice " . I have a much stronger feeling about

>the importance of Aubrie's signing. Let me tell you about Aubrie's

>communication development to see if any of your children are/have been

>similar.

>

>Aubrie's first word was spoken " mama " . She never said much else so we

>began signing. She picked up sign long before speaking. At the

>beginning of the summer, she was putting together 2-3 signs in a

>sentence but only uttering one word vocalizations. Some of her spoken

>words are very clear but most are really vocalizations that may or may

>not approximate the actual word. She even has some " words " that use

>non-english sounds. For example, " kitty " is a weird sound from her

>throat. There are many speech sounds that she cannot make yet, like " p "

>and " b " . As the summer progressed, she added new spoken words and new

>signs pretty much simultaneously. She is talking a lot more now than

>just a few months ago, but, as I said, her " words " are not usually very

>clear at all. Many are just the vowel sound of the word. Combined with

>the sign and in context, I can usually understand her. Her signs are

>also not very perfect because of her poor fine motor skills. So

>sometimes you need the vocalization to help interpret the sign. This

>morning, she signed a 4-word sentence to me on two different occasions

>about 2 different topics. She does not make that complex spoken

>sentences.

>

>My feeling is that signing is critical for her expressive communication

>at this time. BTW, she may or may not have a mild-moderate loss in one

>ear, but she scores very high on receptive spoken language. She doesn't

>need sign receptively, altho sometimes it does seem to help her

>understand things, but she needs it expressively. Even tho she doesn't

>require someone to sign to her for her to learn and follow instructions,

>she does need them to so that she can talk back about a new concept.

>

>She doesn't fit perfectly into a deaf school where there is total

>communication because her peers won't understand her unique combination

>of sign and speech and the only one modeling speech will be the

>teacher. But she doesn't fit into a regular hearing classroom either

>because those peers also won't understand her and she won't get the sign

>input for her to give back expressively.

>

>Right now, we think there are 2 possible options: 1) dual placement in

>the deaf preschool using total communication and a regular ed preschool

>on the premises that has some signing adults, and 2) any other good

>setting or still that dual placement with a communication facilitator

>(not really just an interpreter and not really just an aide, but someone

>trained in asl and child dev who can intervene when appropriate to help

>her communicate with peers, whether they are signing or speaking, and to

>give her sign and speech assistance as needed when she's trying to

>express something new).

>

>Has anyone had a kid in this situation? We aren't sure why Aubrie is

>having difficulty speaking. If it's a problem that can't be remedied

>well, then she may never speak clearly enough to communicate

>effectively. Some of the specialists who saw her briefly at the eval

>are wondering if she just needs more oral motor therapy. I don't know

>how effective our therapy has been up to now because I don't know enough

>about it. I'm not sure if she is capable of good speech or if she will

>need sign as a back-up for the long term. I'm not ready to take the

>option of sign away from her. She's been in a totally oral household

>and an oral community all her life and still has chosen to sign. I am

>not a fluent signer, I'm her only sign teacher, and still her sign

>vocabulary far exceeds her spoken one.

>

>I'm going to have to go in to the IEP meeting ready to argue the

>importance of sign. Any advice or comments out there??

>

>Thanks in advance!

>Michele W

>mom to Aubrie (2.5 years) CHaRgE and (8 yrs), wife to DJ, in IL

>west@...

>

Get your FREE Email and Voicemail at Lycos Communications at

http://comm.lycos.com

I need some help here if anyone's has had a similar experience. We

just had Aubrie's case study eval for her transition from 0-3 to preschool.

Things were going fine until the speech person gave her oral summary and

said that Aubrie's primary language was spoken english with sign as an

augmentative tool and that she needed an oral preschool environment and

"some sign support would be nice". I have a much stronger feeling

about the importance of Aubrie's signing. Let me tell you about Aubrie's

communication development to see if any of your children are/have been

similar.

Aubrie's first word was spoken "mama". She never said much else

so we began signing. She picked up sign long before speaking.

At the beginning of the summer, she was putting together 2-3 signs in a

sentence but only uttering one word vocalizations. Some of her spoken

words are very clear but most are really vocalizations that may or may

not approximate the actual word. She even has some "words" that use

non-english sounds. For example, "kitty" is a weird sound from her

throat. There are many speech sounds that she cannot make yet, like

"p" and "b". As the summer progressed, she added new spoken words

and new signs pretty much simultaneously. She is talking a lot

more now than just a few months ago, but, as I said, her "words" are not

usually very clear at all. Many are just the vowel sound of the word.

Combined with the sign and in context, I can usually understand her.

Her signs are also not very perfect because of her poor fine motor skills.

So sometimes you need the vocalization to help interpret the sign.

This morning, she signed a 4-word sentence to me on two different occasions

about 2 different topics. She does not make that complex spoken sentences.

My feeling is that signing is critical for her expressive communication

at this time. BTW, she may or may not have a mild-moderate loss in

one ear, but she scores very high on receptive spoken language. She

doesn't need sign receptively, altho sometimes it does seem to help her

understand things, but she needs it expressively. Even tho she doesn't

require someone to sign to her for her to learn and follow instructions,

she does need them to so that she can talk back about a new concept.

She doesn't fit perfectly into a deaf school where there is total communication

because her peers won't understand her unique combination of sign and speech

and the only one modeling speech will be the teacher. But she doesn't

fit into a regular hearing classroom either because those peers also won't

understand her and she won't get the sign input for her to give back expressively.

Right now, we think there are 2 possible options: 1) dual placement

in the deaf preschool using total communication and a regular ed preschool

on the premises that has some signing adults, and 2) any other good setting

or still that dual placement with a communication facilitator (not really

just an interpreter and not really just an aide, but someone trained in

asl and child dev who can intervene when appropriate to help her communicate

with peers, whether they are signing or speaking, and to give her sign

and speech assistance as needed when she's trying to express something

new).

Has anyone had a kid in this situation? We aren't sure why Aubrie

is having difficulty speaking. If it's a problem that can't be remedied

well, then she may never speak clearly enough to communicate effectively.

Some of the specialists who saw her briefly at the eval are wondering if

she just needs more oral motor therapy. I don't know how effective

our therapy has been up to now because I don't know enough about it.

I'm not sure if she is capable of good speech or if she will need sign

as a back-up for the long term. I'm not ready to take the option

of sign away from her. She's been in a totally oral household and

an oral community all her life and still has chosen to sign. I am

not a fluent signer, I'm her only sign teacher, and still her sign vocabulary

far exceeds her spoken one.

I'm going to have to go in to the IEP meeting ready to argue the importance

of sign. Any advice or comments out there??

Thanks in advance!

Michele W

mom to Aubrie (2.5 years) CHaRgE and (8 yrs), wife to DJ, in

IL

west@...

" 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

20-22, 2001. Information will be available first in CHARGE Accounts, the

CHARGE Syndrome Foundation's newsletter. "

For information about the CHARGE Syndrome

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

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

Michele,

My son is just like Aubrie. However, my son has a moderate to profound hearing loss. You might want to keep up on checking Aubrie's hearing, because these kids are smart and know how to compensate. Without his hearing aid, we swear he hears fine, but then speech comes out, and high chair becomes "eye chair" with him also signing it "eye", not high. Although very cute, it is a major problem. is 3.5 years old. He is in a school for the deaf and hearing impaired. They use total communication. By that I mean, sign, speech, and communication boards and other augmentative devices. Presently, my sons speech is becoming much clearer to ME, and to a chosen few. However, last year, his speech was just like Aubries. He gets speech 5 times a week at school, and communication is the key focus in class. He also has a personal aide within the classroom. His receptive speech is excellent, he scored above average on the IQ testing. He understands concepts a 3 year old should not, but also doesn't understand concepts a 3 year old should. He speaks in 5-9 word sentences.

My advice to you, since I am in the same situation, is to put Aubrie in the deaf school but only as long as they also speak. The other kids will definitely understand her. Just because it is a "deaf" school doesn't mean that they are all completely deaf and cannot hear or speak back. They just can't hear well. At this age, it is hard for two year olds to communicate to eachother anyway, and believe me, deaf or not, they will find ways to.

By the way, also uses a communication book. This helps him in the event nobody can figure out what he wants. For example: The other day he was telling me he wants to daw ??? I kept saying you want the book? You want the what? He kept saying no, no very patiently. Then, he got so frustrated, he went in his room and came out with his magnidoodle. OH! He wanted to draw. He was also signing draw, but I couldn't understand the sign either. He has 2 malformed hands, and his signing can be good sometimes, but mostly not! Good luck.

advice -- this is long...

I need some help here if anyone's has had a similar experience. We just had Aubrie's case study eval for her transition from 0-3 to preschool. Things were going fine until the speech person gave her oral summary and said that Aubrie's primary language was spoken english with sign as an augmentative tool and that she needed an oral preschool environment and "some sign support would be nice". I have a much stronger feeling about the importance of Aubrie's signing. Let me tell you about Aubrie's communication development to see if any of your children are/have been similar. Aubrie's first word was spoken "mama". She never said much else so we began signing. She picked up sign long before speaking. At the beginning of the summer, she was putting together 2-3 signs in a sentence but only uttering one word vocalizations. Some of her spoken words are very clear but most are really vocalizations that may or may not approximate the actual word. She even has some "words" that use non-english sounds. For example, "kitty" is a weird sound from her throat. There are many speech sounds that she cannot make yet, like "p" and "b". As the summer progressed, she added new spoken words and new signs pretty much simultaneously. She is talking a lot more now than just a few months ago, but, as I said, her "words" are not usually very clear at all. Many are just the vowel sound of the word. Combined with the sign and in context, I can usually understand her. Her signs are also not very perfect because of her poor fine motor skills. So sometimes you need the vocalization to help interpret the sign. This morning, she signed a 4-word sentence to me on two different occasions about 2 different topics. She does not make that complex spoken sentences. My feeling is that signing is critical for her expressive communication at this time. BTW, she may or may not have a mild-moderate loss in one ear, but she scores very high on receptive spoken language. She doesn't need sign receptively, altho sometimes it does seem to help her understand things, but she needs it expressively. Even tho she doesn't require someone to sign to her for her to learn and follow instructions, she does need them to so that she can talk back about a new concept. She doesn't fit perfectly into a deaf school where there is total communication because her peers won't understand her unique combination of sign and speech and the only one modeling speech will be the teacher. But she doesn't fit into a regular hearing classroom either because those peers also won't understand her and she won't get the sign input for her to give back expressively. Right now, we think there are 2 possible options: 1) dual placement in the deaf preschool using total communication and a regular ed preschool on the premises that has some signing adults, and 2) any other good setting or still that dual placement with a communication facilitator (not really just an interpreter and not really just an aide, but someone trained in asl and child dev who can intervene when appropriate to help her communicate with peers, whether they are signing or speaking, and to give her sign and speech assistance as needed when she's trying to express something new). Has anyone had a kid in this situation? We aren't sure why Aubrie is having difficulty speaking. If it's a problem that can't be remedied well, then she may never speak clearly enough to communicate effectively. Some of the specialists who saw her briefly at the eval are wondering if she just needs more oral motor therapy. I don't know how effective our therapy has been up to now because I don't know enough about it. I'm not sure if she is capable of good speech or if she will need sign as a back-up for the long term. I'm not ready to take the option of sign away from her. She's been in a totally oral household and an oral community all her life and still has chosen to sign. I am not a fluent signer, I'm her only sign teacher, and still her sign vocabulary far exceeds her spoken one. I'm going to have to go in to the IEP meeting ready to argue the importance of sign. Any advice or comments out there?? Thanks in advance!Michele W mom to Aubrie (2.5 years) CHaRgE and (8 yrs), wife to DJ, in IL west@... "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Hi,

Jack also says " Eye Chair " (high chair) and " daw a picture " but his speech

therapist and ENT surgeon have said that his speech is at the level they

would expect for a " normal " 3 year old and that they are not too concerned at

the moment about his pronunciation. I sometimes think that we may forget what

is a " normal " stage of development for a child of the same age. Sometimes I

feel that I am always striving to perfect things with Jack whereas these

areas of development just happened with my daughter without me questioning

everything. It would be nice just to let Jack be a regular kid and not have

any therapies for a while but I would be scared to stop. Anyway, when he is

at Nursery he is a regular kid and fits in with the rest of the children. To

be honest I don't think they notice that there is anything different about

Jack apart from the fact that he can't walk yet or run around with them.

Anyway, what I guess I'm trying to say is, don't be too hard on yourself or

your kids.They are still " babies " and I'm sure if you look around and listen

to other children you'll be amazed at just how well our kids are doing

Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE

Dumfries,Scotland

[Guest guest]

Michele,

Of course I have something to say here. I hope you don't mind my two cents.

I believe that finding a way for your child to communicate their wants and

needs is utterly important. But, if there is the slightest ability to

communicate orally then that is what should be worked on intensely when they

are little. I hate to say it but this is an oral world. Signing is

wonderful, but later on in life there are limitations if this is the only or

major form of communication they have. We were incredibly lucky that we found

that Patty had this ability.

As I said before, Patty learned sign when she was a baby. These were

basic need signs, like Mom, Dad, eat, bathroom... We were told she would

never talk. But she was trying SO hard to. Around two she was making

guttural sounds and I noticed these sounds were different for different

things. For example Dad was kind of like " aaa " and Kris sounded like iiii,

with nasal tones to them. She could say Mom though. Now I know it was the

easiest word for her. We opted to send her to a school for the deaf/hearing

impaired that focused on oral skills. At that time Patty's hearing was mild

in the right and moderate in the left. This school was fantastic. She did

learn how to talk. She only signed if we couldn't understand her and she was

getting frustrated. We went from incredibly small goals to where she was

integrated in Regular Ed for kindergarten.

I am not saying it was easy. They were tough. They taught us how to be

tough too. She couldn't enter the room unless she said hi-first she had to

attempt a sound, then a close approximate to the word, then finally the word

itself. Also, they worked on her hearing. She was the queen of lip-reading,

she had taught herself. They would cover their mouths when speaking to her.

My child learned how to hear there too.

You know, Patty did not fit in there either. But she never fit in

anywhere. She cannot hear high pitch sounds, sh, s ch... so she had to learn

them and how to produce them, it took years. She also has the submucus cleft

and short soft palate. This made the hard sounds difficult to produce, like

k, g,...Then, there were the motor difficulties of her mouth and tongue.

They worked on that too. Like I said though, one goal at a time.

Patty still has some problems. For example, church sounds like shurch.

She doesn't hear the difference but has knowledge of the word. She'll

correct when she knows to. You know, I prayed and prayed that Patty would

talk. We are lucky, she does. Now we call her Chatty Patty. The kid

doesn't stop.

There is a problem though. She has basically forgotten all signs. The

problem is when she is at a party, restaurant, anywhere that is loud she

cannot hear what is going on. Her hearing is now profound in the left and

moderate to severe in the right-because of the numerous ear infections and

stuff. Anyway, I believe she has to learn how to sign again. She is so much

on the outside when there is background noise. Someone has to tell her what

is going on. And, people get inpatient after the 3rd " What " even thought

they don't mean to. It is so frustrating for her. She could be so more

independent if she learned how to sign again.

There, have I totally confused all of you.

Bonnie, Mom to Patty CHARGE who will be soon 16, and Kris who will soon be

18! Where has the time gone?

[Guest guest]

I guess I'll throw my two cents in as well. Getting a communication system is

one of the most important things for our children. It is less important what it

is, than that there be one. You will find speech pathologists who think oral is

the only way to go, and nothing else is any good. You will find others who swear

by total communication, and others who want to push sign. First, you have to

decide what is important to you. And second, you have to go with your child's

strengths. Why put incredible effort into oral communication if you're not

going

to get there, and in the meantime sign languishes? Also, why spend time only on

sign and miss out on oral speech? The problem is, we'll never know what was the

right way, and have to forgive ourselves ahead of time for being wrong, if we

are. Then push for what makes sense to you. If you think a combination of sign

and oral is right along with some oral stimulation. etc., and this is based on

your knowledge of your child as well as what you have heard and made sense from

the professionals, then go for it.

Tim Hartshorne, father of

[Guest guest]

Dear Michele,

Boy, I read your letter and it sounded so, so familar! We are going

through the exact same thing with Katelyn! This is what we have

decided to do! She starts regular preschool on the 7th of

september. She is three, but we are putting her into the two and a

half class. She will have all of her therapies in the class working

beside her to help her and to help the teachers! The teachers there

are wonderful and have started to learn a little a sign already! I

have taken Katelyn in a couple times with the just the teachers there

and let Katelyn get used to her teachers and for them to see some of

her sign. I am afraid though! It is just mother fears! I am also

her primary sign teacher. I also refuse to take that away from her!

Her speech is also exactly what you were explaining! " Speech only

the parents can understand. " We are going for a diagnosis of speech

apraxia! Yes it can be overcome but it is very hard work! Her

speech will probably never sound exactly right! Fight for what you

think is best is for child! You know her the best and don't let

anybody tell you any different, because they will try!

Hope I helped a little,

Roxanne, mother to Katelyn(charge),Kristopher and wife to Don

> I need some help here if anyone's has had a similar experience. We

just

> had Aubrie's case study eval for her transition from 0-3 to

preschool.

> Things were going fine until the speech person gave her oral

summary and

> said that Aubrie's primary language was spoken english with sign as

an

> augmentative tool and that she needed an oral preschool environment

and

> " some sign support would be nice " . I have a much stronger feeling

about

> the importance of Aubrie's signing. Let me tell you about Aubrie's

> communication development to see if any of your children are/have

been

> similar.

>

> Aubrie's first word was spoken " mama " . She never said much else so

we

> began signing. She picked up sign long before speaking. At the

> beginning of the summer, she was putting together 2-3 signs in a

> sentence but only uttering one word vocalizations. Some of her

spoken

> words are very clear but most are really vocalizations that may or

may

> not approximate the actual word. She even has some " words " that use

> non-english sounds. For example, " kitty " is a weird sound from her

> throat. There are many speech sounds that she cannot make yet,

like " p "

> and " b " . As the summer progressed, she added new spoken words and

new

> signs pretty much simultaneously. She is talking a lot more now

than

> just a few months ago, but, as I said, her " words " are not usually

very

> clear at all. Many are just the vowel sound of the word. Combined

with

> the sign and in context, I can usually understand her. Her signs

are

> also not very perfect because of her poor fine motor skills. So

> sometimes you need the vocalization to help interpret the sign.

This

> morning, she signed a 4-word sentence to me on two different

occasions

> about 2 different topics. She does not make that complex spoken

> sentences.

>

> My feeling is that signing is critical for her expressive

communication

> at this time. BTW, she may or may not have a mild-moderate loss in

one

> ear, but she scores very high on receptive spoken language. She

doesn't

> need sign receptively, altho sometimes it does seem to help her

> understand things, but she needs it expressively. Even tho she

doesn't

> require someone to sign to her for her to learn and follow

instructions,

> she does need them to so that she can talk back about a new concept.

>

> She doesn't fit perfectly into a deaf school where there is total

> communication because her peers won't understand her unique

combination

> of sign and speech and the only one modeling speech will be the

> teacher. But she doesn't fit into a regular hearing classroom

either

> because those peers also won't understand her and she won't get the

sign

> input for her to give back expressively.

>

> Right now, we think there are 2 possible options: 1) dual

placement in

> the deaf preschool using total communication and a regular ed

preschool

> on the premises that has some signing adults, and 2) any other good

> setting or still that dual placement with a communication

facilitator

> (not really just an interpreter and not really just an aide, but

someone

> trained in asl and child dev who can intervene when appropriate to

help

> her communicate with peers, whether they are signing or speaking,

and to

> give her sign and speech assistance as needed when she's trying to

> express something new).

>

> Has anyone had a kid in this situation? We aren't sure why Aubrie

is

> having difficulty speaking. If it's a problem that can't be

remedied

> well, then she may never speak clearly enough to communicate

> effectively. Some of the specialists who saw her briefly at the

eval

> are wondering if she just needs more oral motor therapy. I don't

know

> how effective our therapy has been up to now because I don't know

enough

> about it. I'm not sure if she is capable of good speech or if she

will

> need sign as a back-up for the long term. I'm not ready to take the

> option of sign away from her. She's been in a totally oral

household

> and an oral community all her life and still has chosen to sign. I

am

> not a fluent signer, I'm her only sign teacher, and still her sign

> vocabulary far exceeds her spoken one.

>

> I'm going to have to go in to the IEP meeting ready to argue the

> importance of sign. Any advice or comments out there??

>

> Thanks in advance!

> Michele W

> mom to Aubrie (2.5 years) CHaRgE and (8 yrs), wife to DJ, in

IL

> west@p...

[Guest guest]

,

It sounds like you are getting more clear about what you feel Aubrie

needs in a preschool. I'm glad you have some options. I am very pleased

with 's experience in the Regional Day School for the Deaf.

has a severe loss in one ear and a mild loss in the other that when aided

results in good hearing. However, due to 's trach sign language is

her language. She can hear well enough to follow instructions but she

can only communicate through sign language. She may be getting her trach

out soon but that is no gauruntee that she will begin speaking. She will

have to learn to speak just like Aubrie is doing now.

My main focus when it comes to 's placement is that she needs to be

in an environment where she can express her feelings and needs and ideas.

In a deaf -ed classroom that uses total communication the teachers will

be speaking and all of the children participte in auditory training

(learning to listen, identify sounds, mimic sounds and mouth shapes). In

other words, they all participate in learning to speak orally no matter

what their hearing loss. Eventually, some of the children will become

oral and will move into a more integrated setting. Some will be

dependent on an interpreter and sign language will continue to be their

only mode of communication. At 2 or 3 years old, considering delayed

development, possible cranial nerve involvement, etc..., there is no way

to predict whether or when Aubrie will become a completely oral speaker.

Until it is known for certain, I would continue to pursue sign language

for Aubrie's emotional well-being. Children who cannot communicate

become frustrated and that results in behavoiral problems. Why take the

chance? With the possibility of progressive hearing loss as a part of

CHARGE Syndrome why not give her every opportunity to succeed. If her

speech really takes off and she no longer needs sign language then

hurray!! she can move to another placement. If there is doubt about her

ability to communicate then place her where she has the most

opportunities to learn.

This is a very long statement saying, " You're doing a great job of

checking out all of your options and preparing for the IEP meeting. " It

can be overwhelming for the first few years. Remember that you can

request results of evaluations and explainations in language you

understand before the meeting, you can present anything about your child

that you think the team should know (your video idea is actually good),

you can request that members of the team come to your home to see Aubrie

in a different environment, and, most important, you do not have to sign

the IEP that same day. If you do sign it and then change your mind you

can make revisions to the minutes and/or call another IEP Meeting

whenever you want to.

Mom to (10), Caleb (8), (almost 5 w/ CHARGE)

Mesquite, TX

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.